To My Journal (July 2001 - December)
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TABLE of CONTENTS
(This is my second attempt at closing out the year, last time I got booted by AOL just as I was finishing the entry, but had not saved it)
This last week was one of relief, frustration, nice surprises, and new additions and anitcipation.
All in all I'm am glad to see a vivid reminder of the old me as I used to be with the Holidays gone, acceptance of the new me as I am now can be ignored and set aside again without so glaring a reflection for such an extended period of time.
I have been additionally frustrated with my inability to add to my journal - I was unable to get to the editing page. Good thing I ran into Resa in the DASN chat who created this site for me and she was able to get me back in. Then to top it off for the past week or so AOL has been giving me trouble. When I sign on I only get a partial page and I am unable to read mail or go anywhere on the Internet. Usually about the 6th time or so that I reboot it finally comes up. I did contact AOL, but thier help didn't clear the problem. I am going to get another free start-up disk and try and reinstall to see if that helps. Up till now I have had no problems and hadn't realized how lucky I was!
My SIL Gayla sent a package for Wade and I. For Wade was a new hat to wear in his Model-A . . . really spiffy! And for me a new cover-up similar to the one that we had gotten when they were down for their visit and we went to Las Vegas. It has a spraypainted body of a very voluptuous woman clad in a thong bikini - this one just happens to be strawberries, so the red and green really looks Christmassy! (Gayla also added a scratch and sniff strawberry sticker! LOL) What fun memories ! We had so much fun in Vegas wearing our cover ups down the Boulevard. Surely proved that man is truly a visual creature -- gosh, whistles, catcalls! I can guarantee you the body painted on the coverup in no way resembled the one underneath! LOL
Our DASN friends from New Zealand, Jean and Brian Mc Naughten welcomed their new grandson, Jaden Troy on the 29th.
The 29th was also the birthday celebration of Karen co-owner/editor of TheRibbon.com . it is a wonderful on-line publication for Carepartners and People With Dementia (PWiD), if you aren't a subscriber, you should be!
I have hopes that the new year will bring a settling affect on my jumbled thoughts. I have so many projects that I need to do, I am going to take a different approach (or at the very least TRY to) and work to complete just one thing at a time, instead of having so many half- started things going. I would like to hire someone who types to get some of my journal entries in from past years . . . at one time they were all entered, but are no where to be found now -- just out floating in cyber-space! I will also be completeing the second half of my re-evauation at UCLA, I'm excited and yet timid about it at the same time, especially since I feel that I had done so poorly on the first half. Boy! I'm becoming quite a pessimist! Hmmm , need to work on my attitude next year for sure! LOL --
Oh, before I forget, I want to share a most unexpected letter from the ADI committee. I was very surprised to have received it and grateful for the kind words. I posted to the DASN Int'l. site for it surely is for us all! I will save it here for posterity.
25 December 2001
Dear Jan
At the recent debriefing meeting of the ADI conference, the Organising Committee acknowledged the tremendous contribution made to the success of the conference by people with early stage dementia and their partners. We are writing on behalf of the committee to convey their thanks to you for your participation.
The committee members appreciate the extra effort and preparations that you were involved in to come to the conference. Everybody travelled a distance to be here, and people from overseas had the added uncertainty of possible travel disruptions. Thank you for your determination and commitment.
You created a world first for people with dementia actively participating in an ADI conference – and in doing so, added a unique glow to the conference. Your example has achieved a great deal by creating a precedent that will encourage others to follow.
In being so open to talking to other conference participants and to the media, and the DASN international stand, awareness of dementia has been considerably heightened in this country. Public misconceptions have also started changing about the effects of early stage dementia and the capability of people to manage their everyday lives. This was a precious gift to offer.
Our very best wishes for Christmas and the year ahead.
Wendy Fleming
ADI Conference Chairperson
Verna Schofield
ADI Conference Committee
I have had a very hard time dealing with the holiday's and my ambivilant feelings. I really have been trying hard to sort through it all ... putting it down in writing gives it permanence, something I've been trying to avoid.
Shopping for Christmas, especially for the grandchildren and everyone's stockings has always been important to me -- finding just the right gift for each one. This year it was a one day trip to the stores only because I didn't want to dissappoint them with having no gifts for them. No homemade cookies and goodies for the neighbors either this year. And since Wade took me shopping - there was nothing special for him either. I am not depressed, more like sorrowful at what I know were joyful traditions in our family being undone by my apathy and general disinterest.
I feel so hollow in wishing others Merry Christmas - it is just the thing to do. It is so hard to explain - and really does sadden me, and yet I can do nothing about it.
We did have the family over for dinner, I had a few anxious moments but was able to stay on the fringes of the day. The kids opened their presents, and Wade and I ours from them. The kids were so excited in the gifts that they had purchased for us from the 'store' at school "With our own money!" - With no tree in the house, and minimal decorations it hardly even felt like Christmastime.
We picked up Ashton &Jake after school on Friday and took them camping with us for the weekend.They both enjoyed the fishing and miniture golf. Tina & Todd picked them up on Sunday and spent the day with us at the campground. Most of the RV's in the campground were decorated with lights and trees inside.
Today I am glad it is finally over, and I don't have to try and figure out what has gone so wrong for me -- so strange knowing that it is not right, and even knowing what needs to be done, yet totally unable to change a thing.
Even the phone calls we had wanted to place couldn't be done as the phone company messed up and dropped our long distance carrier and we were unable to call any of our family and friends.(Think Wade was rather sad that no one but Tina called us.) Neither of us have ever been much at letter writing, and Christmas has always been the time we have called to visit. - Oh well, just in keeping with the way this years holidays have gone.
Now that it is over today will be better!
Most exciting day today. Wade and I went out to the Northridge Alz. Assn. at the invitaion of Laura Rice the coordinator there. We were priviledge to be allowed to participate in their "Clubs" for Early Stage support, the first in it's 6th week of a ten week program, and the second a continuing group of previous graduates. It's always nice to connect and share experiences with others in this same leaky boat! LOL
I really enjoy this type of informal setting where we can all share, compare, encourage and commiserate together. I was able to share with them about DASN, and invited them to join. Both groups were enthusiastic and receptive to an Internet connection and also the rehabilatative benefits that were available to them. Laura had already been working on making computers available to the club, and we discussed the posibility of perhaps someone going into the home to tutor one on one to make a basic connection. List the steps, 1-2-3 making it clear and easy to do on their own. -- So exciting! They are so committed to serving the PWiD populace at the Northridge Alz.Assn., and are open to new ideas and thoughts. I urged members of the groups to become more involved in the Alz. Assn. and perhaps persue being part of the governing board, giving a voice to the PWiD and care partner in the decision and policy making.
My sincere thanks to Laura for inviting me and making the day possible -- and for the great lunch and shared time together!
Came home to the sweetest message on our answering machine from our Granddaughter Ashton, beseaching Wade to come and get her so that she could spend more time with us. "It just isn't fair that you are so far away and it takes so long to get to your house"! -- I miss having them near that is for sure, but it really has worked out for the best -(at least that is what I keep telling myself..)
Weather has turned cold and winter like today! Rain was over by the time our meetings ended in the afternoon - the temp was down to 43! YIKES Feels like snow! LOL . . . sure hope it warms up a bit for the weekend.
Got some more Christmas cards done.
There was a box at the door for me today, a bit of investigation found it was sent from a dear friend, Dean Datel. Thought I'd share the opening with her, so waited till I got her on the phone to open it. I've never seen anything like it! It has a two tier plate stand -- on the top shelf sitsa berry pie, and the bottom tin holds a cinnamon roll, chocolate tort, and chocolate jelly roll on gingham cloth napkins - all Candles! And they smell wonderful!! Like a bakery. Thank you again Dean - you are such a thoughtful lady!
Really good news to share with you today in regard to our (DASN) participation in the ADI conference.
In part the letter stated ..." I am board member of the Israeli association of Alzheimer, responsible on our web site..
I've read the papers from the presentation at the ADI Conference in New-Zealand. I'd like to have your permission to translate the slides and lectures into Hebrew, and publish it at our web site. The lecture will interest Israeli people, and it will be easier for many of them to read it in Hebrew.
I wanted to share with you about 'Dinner'My niece and her husband bought a turkey chick in the spring with thoughts of Thanksgiving,not wanting to give it a 'pet' name (they have 3 children)they simply called him 'Dinner'. Well I'm pleased to report that Dinner dressed out at 32 pounds, and indeed was a feast (dinner...lol) fit for kings!( Thanks to my brother Les and our visit last night for reminding me - I've been meaning to share this for a while)
Have I told you I really dislike going to the dentist?!!!
Spent about an hour this morning with him griding down and trying to adjust -- I left in pain - not a happy camper. Think I'll wait for an attitude adjustment (on my part) before I go back again, I'm just too impatient and uptight.
We went to an open house at The Park Regency this afternoon, really a lovely care facility the administrator is my friend Colleen Aldrich.
The luncheon was fabulous! Her chef is wonderful - everything freshly prepared for you.
The entertainment was a harpist - I really enjoyed that.
Linda Scheck the Executive Director of the Alz. Assn. joined us at our table and we shared some ideas for future involvement of Wade & I with the Orange County chapter. I also shared with her my feelings that I had lost my credibility with some of her key staff, their discounting my diagnosis because of the time since my diagnosis. Also, my disappointment that the Orange County board would not include PWiD in a position on the board. I told her that if the opportunity came up for me to join the LA Chapter board I would gladly accept! There is to be some staffing changes at the office, so it will be interesting to see what the leaderships views on PWiD involvement will be.(Hopefully inclusive!)
Feeling talkative tonight so called my brothers, sure was nice, it really would be nice to be able to live closer.
Thank you Martha for visiting my website and signing my guestbook, I do hope you'll come again! VBG
Well, it took us 2 hours and 40 minutes to go the 32 miles to UCLA - forgot just how bad the traffic can be around here on a work day.
I met with Dr. Tangus, very nice lady. The tests she gave me were for the most part different than the ones I'd had before at UCI, although some were the same. One that caused me considerable frustration was the task to repeat back a series of letters and numbers -- saying back the numbers first (in numerical order) then the letters (in alphabetical order). Example: D 2= 2 D I did okay till we got to 4 digit/letter combinations, I could only repeat back three-- I KNEW that there was a forth, but I'll be darned if I could get to out! Very Frustrating! Also, the blocks were more of a challenge this time. In the past it was a fun test, because it was like putting together a quilt pattern. You know I think it WOULD (and will) be easier when I am not so aware of my failures.---Just like repeating back a story to her, I knew there were a lot of details that were missing, I just couldn't find them!! LOL
When we left I was exhausted and didn't do much more than check on my email and work on a bit of crocheting for the rest of the evening.
We went out to breakfast (poached eggs . . whoopee -LOL) and took a short ride on the Harley -- it really turned cold on us . . .mid 50's, mind you it was just 80 two days ago! Our early winter weather is always unpredictable. We went by the Harley dealership to look at the latest model - it is really beautiful all chrome.
I am getting a bit anxious about tomorrow, I am scheduled to go into UCLA (my first time there) for reevaluation testing.
Worked on getting materials and information to take with me to the new Alz. Assn. office next week - somehow I'm still scattered.
I worked on my report for the Los Angeles and Orange County Alz. Assn.s in regard to our ADI conference trip at the end of October -- I'm glad these people are patient and understanding. Just have the expense page to do and I can send them off.
Ah, the aftermath of an emotional day. . . Very quite subdued mood today, not much of anything accomplished. Not happy with my new 'toofers', having a tough time eating, I'm scheduled to go back Tuesday, hopefully he'll be able to get them adjusted.
Almost didn't go to the luncheon, but made a last minute decision to load up on the Tylenol and go.
Beautiful gathering at the 'Turnip Rose', company was great all faces and friends I have been with over the years. Wade & I sat at the table with Coleen Aldrich one of my first Alz.D. contacts as I went to her facility early on to get my 'Safe Return' ID - I have been blessed to have her as a friend, confidant and supporter. Also at our table was JoAnn Spangler (?) -- she is on the Patient Community Services Committee with me - my favorite! She is such a funny, wonderful gregarious lady --- kept our table alive with conversation and laughter.
I am embarrased to report that I received an award (but this one I'm not giving back! It's exquisite! lol) I have no idea why I would get a volunteer award when what I do is advocate for very selfish reasons - (not wanting the Alz.D to continue as my inheritance to my children and their children.)
It is a beautiful crystal star engraved with Alz.Assn., Someone to Stand By you, my name and Alzheimer All-Star 2001
Also in attendance were representatives of Congress -- so I received a certificate of Congressional recognition and the California State Assembly and received a certificate of recognition from them. -- Well, my lemons have certainly turned to lemonade today!! LOL
The new winter Alz.Assn. Orange County newsletter is in, got another great plug in for DASN International, including our web address (dasninternational.org). I was also told that they are working diligently on their web site to include PWiD and are going to add a link to DASN International - very exciting!
PS...I wasn't able to eat the salad or main course, just a bit of brocolli -- but, dessert was wonderful! Chocolate cake!and apple pie -- passed on the pie inhaled the chocolate!! LOL
Happy Birthday to my best friend, our daughter Tina who is 35 today! She has really been a gift from God that I cherish more and more with each passing year.
Took the dentist 3 and a half hours but the 5 teeth were extracted yesterday-- next time I think I'll be more than happy to risk losing the brain cells that anesthesia might cause. Slept the entire rest of the day, just up enough to take more pain meds.
Much the same today, had to go back in to the dentist at 2 so got up and took a shower about noon. Guess the ice bags yesterday worked, no apparent swelling - I just feel lousy to put it mildly! Tomorrow will be better! It has to be I am scheduled to be at a luncheon homoring volunteers who work on our behalf at the Alz. Ass. in Orange County -- well at least I'll be able to eat dessert?? LOL
Needless to say lots of laundry to do today as well as grocery shopping.
Tina, Ashton and her friend Marley came up in the afternoon. We all went to lunch at Johnny Reb's to celebrate Tina's 35 birthday! (My goodness where has the time gone??)It is good to be home. I have really missed my daughter and grandkids.
We did a bit of Christmas decorating, put out some lights on our fence and since our neighborhood has gone with a patriotic theme this year we have festooned it with silver and blue garland, red, white & blue ornaments and red foil bows. Looks nice!
Not looking forward to tomorrow at all, I have to go in for some major dental work -- they are pulling 5 teeth - don't imagine I'll be up for much of anything for awhile! So please, if I have not gotten to reply to your email mail as of yet . . trust me I will! Has nothing to do with lack of caring or concern I can assure you of that
Maybe it is just as well that I have not had access to my journal for the past week or so, it would have been filled with anger, frustration and hopelessness at varying times and degrees. We did end up buying another RV, the deal being it would be ready by 5:30 Wednesday (before Thanksgiving) or the deal would be off. Our old & new RV's were pulled side by side so we could transfer everything into the new one - I was in tears all the frustration of this whole mess just overwhelmed me when I went into the new unit to figure out what would go where. Only the surface (mirrors, floors, etc.) had been cleaned by the 3 woman crew that had been in there for 5 hours. Every drawer and cupboard had something in it from spilled spices & coffee to over 20 books - oh, and each drawer & cupboard had a pack of juicy fruit gum (maybe their air freshener??? LOL The washing machine had clothes left in it, the tub filthy. To make a long story short (I'm sure you know the conclusion) with everyone gone for the holiday we were stuck and I spent 2 hours cleaning before we could move anything over. We had met another couple getting the same runaround with the dealership that we were, that were waiting on a window installation, what a blessing they turned out to be . Enjoyed a couple of very nice days and evenings with them and Donna helped me to clean and pack stuff away (even gave me a lovely set of sheets for the bed!) and Bob helped to lug it all over with Wade.
So Thanksgiving morning we headed out towards Houston in our septic tank on wheels (they had neglected to clean out the holding tanks . . so we had to live with the stench til we found a dump station which turned out to not be till we stopped for the night) . The 1st night was spent in Van Horn where the KOA hosts had graciously provided Turkey dinner with all the fixin's for their guests. The wind was really howling that night!Once on the road we realized that we could not make it to Houston and so called Jeff and he was able to drive up from Houston and stay with us in the KOA at San Antonio . . . unfortunately Windy couldn't get off of work so it was just Jeff and our grandkids. They have grown! What sweeties. We were glad we were able to get their Christmas presents to them, all had been tucked safely away in the "Harley Hauler" with Wade's bike. We spent Friday night and Saturday with them, and headed back toward Tucson with a list of repairs needed on the new RV. Got in about 2 Monday, told to wait till Tuesday at 9, then 3. . . Wade was steaming by 4:30 when no one had either called or showed! Wednesday, the cosmetic concerns are accepted to be repaired, but our major safety concerns, cupped tire, windshield cracked and popping out in one corner, and no dash heater are being swept under the carpet. Thank goodness Wade read the work orders, and though it took all day with going up the chain of command around Beaudry RV, he finally got some satisfaction. Then they told us it would be the 10 of Dec. before they could do the work. We insisted on them subcontracting it out -- it took those guys 2 days but they finally got the window fixed! So we arrived home about 9PM on Friday. I have over 659 emails awaitin'!
I really regret that we did not get to stop and see Phil (DASN Int'l Pres) as we passed through his town twice! And Bob & Donna our new friends, we had really anticipated stopping to see them as well on the way home, just didn't anticipate the hold-up again at Beaudry RV. Also we were supposed to have looked at some property near Irving Texas I was so looking forward to meeting another online DASNI friend Ben.
But, we do have a nice new (to us . . it's a 2000 model)Tropical 35' RV, it has a slide out living room, washer & dryer, corel counter tops and lots of closet space. It drives much easier that either of our two previous RVs, very stable in the wind . . . and hopefuly our bad luck has all been used up in these past two weeks for some time to come!
We left for Houston Texas to have Thanksgiving with our son Jeff & his family Sunday morning. Sunday evening we stopped dead again about 30 miles from Tuscon in Arizona about 4 in the afternoon. We got towed into Beaudry RV in Tuscon about 11:30 PM Sunday night and we have been here since. They are unable to find out what is causing the problem that we were assured was fixed! Oh well! Very frustrating just sitting here. Only good thing is I've been crocheting up a storm and have 8 more baby hats done. We are not too sure how much longer we'll be here - maybe till we buy another RV! LOL They sure are a huge place here , over 88 acres -- 60 service bays, 85 salesmen, and an RV resort on the lot as well.
Hopefully one of the DASN board will check my journal, if so I'd like to assign my proxy to Mary till further notice! Thanks Mary! We sure have had Dave on our minds hope he is doing well. When I can get on the computer here I'll try and update my journal... seems I am unable to get into my email :( ......
Goodness what a night! The wind REALLY blows hard out this way in the desert. Didn't get much sleep last night. We were near the main train yard, so listened to the squealing of train brakes all night. The rain storm that passed over was really nice though. They didn't get the RV fixed till after 3 - I can't believe how good these two kids are! We were all glad to get home and take showers!
We left for home about 9:30 in the morning. We thought about stopping at 'Peggy Sue's Diner', just 12 miles out of Barstow, but recalled last time that is where we broke down so decided to keep on movin'. Well luck was not with us either - the RV just stopped about 12 on the other side of Barstow! Wade was driving about 70 MPH and it just quit! Luckily we were near a wide pull out and were able to get safely out of traffic. We were towed back to the same repair shop we were at last time we were through this way- we thought they might have time to fix it, but they were swamped so we are spending the night. Good thing these kids are up for unexpected adventures when out with us! They really are very good, will be a night of Uno, bingo and movies!
Gathered up the grandkids, Ashton and Jake, then we all headed over to meet with Phil (our DASN Int'l president) and his sister Elaine, and my new friend Allan for breakfast at the airport. Phil is in town giving a speech for Huntinton's Disease as he is their "Man of the Year". Hectic but nice. It was good to see Phil again and be able to discuss some issues face to face. Allan is going to be a great asset and help to DASN - I won't have to be the lone voice here any longer. Elaine is a schoolteacher, and small world that it is, teaches in the town in which we own property - huge town 1 square mile total! lol They went on to meet up with Joe (Joe's quest) in the hospital and his carepartner Penny. I still haven't been able to see Joe since his surgery, I'm still carrying a bit of the cold bug and can't jeopardize him any farther by sharing that with him! I did send along a packet with Phil though, with Joe & Penny's 'official' DASN Int'l identification badge, business cards and the publications we passed out in NZ.
We loaded up the RV and left for Las Vegas about 1. Dusk as we approached the Nevada border and the lights were just coming on, by the time we hit Las Vegas it was dark and the strip was in it's neon glory! Wade braved driving the RV down the strip so the kids could see it all. We stayed at the Circus-Circus RV park. Took the kids into the arcade area, and let them play the games there. Thank goodness for a fishing game where everyone won a prize, for they certainly weren't lucky at any of the others! We all enjoyed the circus acts. Can't believe I actually went to Vagas and didn't even put a quarter into a slot machine!lol
Well, my computer decided to take a holiday of it's own for a week so I have been unable to do my journal.
Went to the dentist twice in that time, and have gotten things in motion for some major work to be done right after Thanksgiving. I am not looking forward to it, but it is quite necessary.
Attended my Patient and Family Services committee meeting and gave my report on ADI. The committe seems to understand the needs, placing them into practice will be the challenge.
There is an Alz. D. conference here on the 16th and I was quite upset after having read through the brochure. It is entitiled: Doing the "Right" Thing, which includes the topics
- The Journey of Alz.D: Ethical Challenges Along the Way
/ When Is It Time? Critical Decisions Along The Journey
/Ethical Issues in Early Stage Dementia
/Autonomy & Choice: Is It Possible for Individuals With Alz.D?
Not a one of these items which deal directly with PWiDs has input from a PWiD - we do have opinions, we do have a voice, why are we spoken of, about and to? Is there no room for our input, or is it that it is of no consequence to these professionals who have already decided our opinions and fate? -- The program makes no indication that any of the conference is for attendance by PWiD, only Carpartners,Students,Professionals, and group facilatators. So maybe that is why? It is about us, and how they perceive the journey, and of no consequence how we are living the journey?
Apparently Peter Braun, the Executive Director of the Los Angeles Alz.Assn. is one person who understands the philosophy of inclusion and is speaking out quite vociferously on our behalf. I look forward to continuing to work with him.
Ashton (our granddaughter) has been with us for the week. As usual lots of Uno games. We also made some snowglobes and friendship bracelets. We spent an entire afternoon at the Taco Bell Science Museum - Great fun, all interactive. Ashton's favorites were the bed of nails, (which she tried at least a dozen times! )and the earthquake simulator.
Jake joins us today, I think we are going to take a short overnight stay in the RV tomorrow. Probably a run to Circus-Circus in Las Vegas. We need to give the RV a last test going over the big pass before we head out for our trip to Texas on the 17th. And the kids have never been to Circus-Circus and are excited about that!
We are meeting Phil (the DASN Int'l. president) for breakfast in the morning, at the airport naturally! lol He is in town to give a speech to the Huntinton's Disease group here in Orange County. He is also going to visit Joe (Joe's Quest) in the hospital where he is recovering from surgery.
My house still isn't back to normal, but I'm getting used to the disarray and clutter - maybe the good faries will show up unexpectedly one of these days??! Now, that's wishful thinking!
Well, what goes up, must come down. Paced ourselves and got all the decorations down -- but that is about it for our day!
I did listen to Ron Regan in a ABC newschat - he was great, too bad the Dr. that was on with him wasn't as up to date on the medical info he was sharing.
My friend Brian has written the following article for the NZ Alz. paper and I've gotten his permission to share it with you here. He's a wonderful writer, and both he and his wife lovely delightful people.
Dear DASN Friends
I wish to share a few words I wrote as a result of the N.Z. Conference. This is not a report or a literary work of art. Just some observations.
I do hope it may encourage and reinforce the bonds that bind us each to one another.
Love to you all and happy reading,Brian.
What a Gathering!
It seems fitting to borrow from the Christmas slogan. ‘We are the Reason for the Season.’
Without us who have dementia there would be no Alzheimer's Association and no World Conference. The officials and organisers would be quite rested and blissfully unaware of their potential to change lives and attitudes.
For that was what this conference was all about and to everyone's credit this potential is starting to be realised as well as being increased by the moment.
Yet this was a world first. People with dementia (PWiDs) were not only invited to attend but were also given leading roles in addresses and seminars. PWiDs were active and respected participants in all facets of the occasion. We had twelve PWids in our discussion group which makes us 0.5% or less of the entire conference of over one thousand people. Yes, we felt special and we will work to promote the early diagnosis of dementia as we are able so that the percentage of PWiDs to carers and medical and social professionals will increase in the future..
DASN International, a "Worldwide non profit organisation by and for those diagnosed with dementia working together to improve our quality of life" had a booth set up in the main gathering area. Husbands and care partners of members manned it while they were in discussion groups. An hour long video presentation was shown and countless printed articles distributed sharing the realities of living with dementia and emphasising the great pool of talent and potential we PWiDs have to change our personal, social, medical and political futures. Great interest was shown in this booth.
In our discussion group, which was PWiDs ONLY, facilitated by Jan Phillips from USA and Christine Boden from Australia, we covered subjects as diverse as the dismal reality that Pharmac does not accept that life changing drugs e.g. Aricept and Exolon are worth subsidising for our greater involvement in society, (or is it that they have the mindset that we have little worth in their scheme of things?), to a great demonstration of a numbers game 'Numero" which was created by an Australian PWiD as a game for his grandchildren. He later found it a wonderful way to stimulate our slowing abilities in calculations. It is fun to play and a great way to spend time with more advanced dementa patients in care. This game is available world wide and the proceeds return to the Western Australian Alzheimer's Association. 'Numero' will soon be available through branches of Whitcouls in N.Z. and I strongly recommend it for all ages, not only PWiDs.
We cried with each other as we told our stories and shared the fears of a progressive illness that would finally take our minds away and laughed at the burnt toast, the half cooked dinners, the forgotten appointments and all the many wonderful situations only we with dementia get ourselves into. There was never an atmosphere of inevitability to regress. Rather the love and support we received from each other created a passion that empowered mind and spirit. As a result I have been empowered to speak and write of my experiences and given a vision of hope and involvement which I intend to offer to our local Alzheimer's Association and to DASN International.
While I was cosseted with my fellows and 'fellowesses' Jean had time to inspect the booths of the international associations present, and to spend time with the drug companies exhibits. She received cheerful support wherever she went and would especially like to single out Dr Verna Scholfield and Mary Rose for being just that much extra. I say thanks to them also.
One jarring note sounded above the music of the occasion. Why do some carers and administrators continue to refer to us PWiDs as clients or 'bodies in care'? The terms were even used on a provincial poster! Being called thus, I find, is both disgraceful and demeaning. We are people with all the humanities that others have. We may be a little slow and forgetful but we are not stupid or depersonalised. I ask the offenders to please accord us more respect.
For me, with early stage dementia, this gathering was a most rewarding and encouraging experience. We shared laughter and tears, deep dissertations on living and dying. Through it all we gained strength from being together. It humbled me greatly to experience the depths of faith and humanity and the heights of love and support offered by my fellow journeymen.
I forgot to tell about Jan's bubbles. She gave each of us a little bottle of gin...oops, bubbles to hang round our necks. When we felt particularly stressed we would open the bottle and blow bubbles over everyone. It made for much hilarity and the rank and file became even more convinced that we had lost the plot somewhere along the line. Funny thing was that they all wished that they had one too. It is a real PWiD's joke.
I came to this conference in fear and left in wonder.
Thankyou and God bless.
Brian McNaughton.
Jean and Brian McNaughton
57 Balaclava Street
Wyndham
Southland
New Zealand.
mailto:jandb@xtra.co.nz
Happy Halloween! (At least here in the States!) And a lovely Blue Moon to boot!We spent most of the day getting a graveyard set up in the front yard and enclosing our front porch as a mini-haunted house. The pups can't figure out what the heck is going on -- Roo especially seems frightened of our skeletons and pieces parts of bodies.Wade dressed up as 'Beetlejuice' - top hat covered in cobwebs and eyes blackened. Once the sunset - I stayed indoors - I really don't like Halloween any more, even though I know it's make believe I get frightened easily - at least in the dark.
I received a lovely phone call from my friend Dean in Texas. Now she has one heck of a story to share -- she has just brought home her husband who has been institutionalized with Alz.D for 5 years -- turns out he was misdiagnosed it wasn't Alz.D at all rather overmedication compounded by my mediaction to aliviate the symptoms of the original medication -- it is a huge mess! She is just thankful to have her husband back, and he seems unaware of the goings on of the past 5 years. She has invited us to have Thanksgiving with her and her family, we are really looking forward to that!
Really feeling rotten today - this cold seems to have gotten the better of me. Was able to get some laundry done, looks like I might have shared it with Wade he's started sneezing this afternoon.
We watched the tape Wade had made of the closing ceremony at the ADI conference. I think the parting words were most auspicious and will share them here:
These were the parting words of Nori Graham who is the Chairman of Alzheimer's Disease International. " ....What we have learned is a vision for the future ..... a complete triumph .... ADI is really committed to working with people with dementia and to help our Associations around the world to also help people with dementia and their carers is high on the agenda .... the message is quite simple - I think in every country every carer should be acknowledged and supported with information and ongoing help and every person with dementia should have a diagnosis and be acknowledged and have ongoing help...."
I will propbably digress back to this conference for some time to come, as I uncover notes, as stories shared trigger recollections. I wrote this on Thursday evening after the end of two very long days ( and two double scotches if I recall correctly! LOL)
WOW!!!!!!I feel numb this evening, all the effort really HAS paid off, and all the wonderful people supporting the vision! The accomplishment by our DASN team has far exceeded even my expectations -- and I'm the dreamer of the lot! WOW!
Our New Zealand hosts had gone out of their way to include us as equal presenters in this conference, not just "People With Dementia". This was hard for me to overcome initially, I must admit. I had been at other conferences where after talking I was embraced with open arms and told how "brave" and "courageous" I was, what a great presentation etc., only to be avoided like the plague by the very same persons when there was a coffee break - then suddenly no one wanted to associate with me. Here at the the ADI 2001 conference, people sought us out, on the conference floor, at our booth. When I was embarrassed in the ladies room because I could not figure out how to turn on the water, someone quietly without embarassing me further, instinctually came to my rescue. - When I finally embraced the acceptace as being more than polite placating it truly was freeing - it is hard to explain the constaints placed on one when in a group where you know you are not accepted, not really welcome, rather tolerated. THANK YOU ALL, everyone of you that has allowed me to again be an active respected participant in the world.
Where to begin?! Unfortunately I've ended my trip with a rather nasty cold developed on the flight home so today I am just a bit under the weather. I will do my best though to update my journal.
What an exhilarating week for me personally and for PWiD. And as my friend Larry advised me, (and I thought he was only joking!) we did indeed arrive home long BEFORE we left. Our flight out of Christchurch left at 3:30PM on Sunday the 28th and we arrived home in Los Angeles at 9:30AM on Sunday the 28th! With the Rx of Zanax I did very well on the flights. (This was a major concern initially)
Christchurch is a lovely park like city with gardens everywhere. The River Avon runs through the city with a park alongside its banks. There are many old churches and homes . . . and the people are extremely friendly and helpful. This was my first update and email to DASN Int'l.:
Date: Wed Oct 24, 2001 5:45 pm Subject: ADI Conference
Good Morning from New Zealand!
Just a brief message to you all to let you know that the DASN Int'l. delegation arrived safe and sound. We are overwhelmed by the accommodations that the New Zealand ADI group has made available for us.
Our 'stand' which we set up yesterday, has a back board presentation space that is showcasing DASN very well . . . one wall is 6' the other 9'. We are first in the line, and the first booth you see when entering the exhibition hall - and the place to be at the conference! The response from delegates has been very positive, very supportive to say the least. ADI has provided a meeting room specifically for PWiD - a VERY large room with food, drinks, chairs, tables and couches so that we may lay down and nap if we desire.( We will also be holding our workshops in this room)
We have had many press contacts and have all done interviews for either TV, radio, magazines or newspapers.
I think we are all exhausted and running on positive adrenaline knowing we need to seize the moment while we have the positive interest! We have filmmakers interested in doing documentaries, chapters from around the world eager to share the "DASN In'tl. Connection", Parkinson's Disease Foundation has extended an invitation to participate in their national conference, and would like to use DASN Int'l. as their advocacy model. And many more opportunities I'm sure I've forgotten -- this is so heartening and energizing! (I'll drop next week -- this week we are all shining!!) Friends we've met on the Internet and have now embraced .... personal greetings delivered from UK and Peter the Grate who has sent his emissary. This is going to be a very positive step forward for the PWiD's of the world I truly believe the repercussions of DASN's philosophy, presence and advocacy will make a difference around the world. People are asking for chat in Hebrew & Spanish thus far to add to our English speaking chat -- far reaching possibilities! You are all here with us in spirit and we carry your message of hope, possibilities and life after diagnosis.
The conference starts in half hour so I must dash (easy to pick up on the local lingo . . LOL) Hold us in your hearts as we do you! We will do our best to keep you updated . . . J@n...
Can you tell I was just a wee bit excited?? LOL The magnitude of what was occuring was more and more apparent as the conference wore on. This truly was a HUGE risk taken by New Zealand ADI in inviting us to be part of the conference. Granted, Christine was a known entity to most as they had seen her hour long presentations, but PWiD's presenting a booth, running workshops - could we maintain for three days of conference and the inherent challenges of constantly needing to be on?? This could have been a huge embarrassment to ADI and PWiD's would have been shoved aside another 5 years -- We are all very proud that we have lived up to the expectations of the organizers and in some instances exceeded those expectations.
The opening ceremony and greeting was initially made in the traditional way of the Mauri - very exciting! The keynote speaker was Dr. Jeffery Cummings from UCLA, Calif. USA.who talked in part of "Unity of Purpose" ... I really like that phrase. His address was informative, innovative and up to date.( I make this last comment because I have been to presentations that were just recycled information, compounding inacuracies . . . we move ahead with new drugs and management skills - those need to be shared not old data) Most enjoyable presentation. I'm afraid with our duties of greeting people at the booth and running workshops, we were only able to take part in a few of the many workshops available.
And my next post to the DASN Int'l group Thu Oct 25, 2001 8:56 am Subject: Re: [DASN] ADI New Zealand Conference Update
Hello again from downunder - Great day of networking -- Christine got a standing ovation after her presentation ( so what's new? LOL) Lots of refernces to DASN Int'l - coping skills and challenges that we as PWiDs face at the hands of the so called experts
Our conference mornings began at 8:30 and ended at 7:30 - a very long day for us all. By Friday my nerves were wearing thin - I don't know how we would have been able to do any of this without my husband Wade, and Christine's Paul. They manned the booth continually for us, offering support, running the videos, handling the sale of books and filling in when we were absent. At the end of the day we relied on them to make our decisions - where to eat, what to order and how to get back to our hotels - we PWiD's were basically zombies at the days end.
We had sent a note out to one of our members in NZ to join us, unfortunately the cost was too high for them to attend, but we insisted that we had not come halfway round the world to miss the opportunity of meeting up with them, a note from me, a call from Lynn & Alan, some urging and supportive letters from stateside Carole & Penny and they came during our afternoon workshop. I was reduced to tears, so glad to meet Brian & Jean, quite overwhelmed by the emotion of the moment.
Our meeting with the ADI committee went well I think, a mutual admiration and trust established in this working group. Among our already published DASN Int'l proposals to the ADI we discussed a recommendation to the drug companies supplying medications for dementia that they print on their label something to the effect: "You have been prescribed this dementia drug by your physician. We strongly urge you to contact the Alzheimer's (and other dementia's) Assn. immediately for further information" followed by the toll free phone number for the nation of distribution.
Friday evening was the reception dinner with Sir Hillary the honored guest speaker - great venue, the Antartic Center. Good food, good entertainment -- I had to bail early as the music was too loud (and I had forgot my earplugs -- dang!)I found the only quiet spot was in the giftshop, I was there for so long I think I was making the employees uncomfortable, like I was a shoplifter! LOL Oh, well!
Morris & Christine's co-dependancy workshop went very well - they graciously turned it into a discussion group with many PWiD's participating. Our workshops for PWiD's went just as nicely, many new friends made. Much support, sharing and understanding.
We all joined together at the end of the conference for dinner, DASN Int'l representatives, PWiD's and spouses from New Zealand and Australia. We all are in agreement that we have been a proud part of history in the making. My special thanks to Verna, Judy and Gaynor. Verna you light the world with your unselfish caring!
Wade & I spent Sunday morning packing and buying souveniers for our family - the rain that had threatened all week gave way to light morning showers - we were sorry not to have more time to enjoy this lovely paradise, yet glad to be heading home.
Again OUR most sincere thanks to the Los Angeles Alzheimer's Assn., Peter Braun Executive Director and Orange County Alzheimer's Assn., Linda Sheck Executive Director for sponsoring my husband and I to attend the ADI conference - it has been an invaluable experience to say the least.
Our usual breakfast at the airport. They are taking advantage there of the control of the area around the airport since most of the planes are grounded or gone. (Fullerton airport is within the 25 miles radius of the LAX airport so to fly in or out you have to be liscensed to fly by instuments & file a flight plan - no visual flying)Half of the field is torn up and they are going to rebuild resurface.
Quick trip to the swap meet and had my bracelet clasp repaired. We haven't been there in years - kinda fun till the crowds started getting larger. Patriotic flags, t-shirts, pictures, pins for sale everywhere!
Early evening and we are off! We have to be at the airport 4 hours early for customs inspection. Looking forward to seeing Lynn there. Wade is bringing along his computer , so I am hoping to be able to keep my daily journal, if not I will catch it up when we return next Sunday the 28th. . . . Now, I wonder what I'll discover we have forgotten!
We got our first official piece of DASN mail in our new PO Box - from the IRS with our new EIN number. Obtaining nonprofit status is very lengthly and time consuming - and the paperwork endless. Thank goodness I've not been responsible or it never would have gotten acomplished! Our president Phil is to be lauded this time around. Our past president Laura had already done this for DASN so the model was there for DASN International I'm sure making it somewhat easier for Phil.
We are packed and good to go -- except for my curling iron and Wade's shaver! LOL I have a huge note in the suitcase so that I am sure to include them before we take off tomorrow.
Called the airlines to confirm our reservation,it was rather strange sounding . . . " You are confirmed on flight 5 leaving the 21st, a 12 hour flight due to aarrive two days later on the 23rd " -- My frind Larry asked, when I had relayed this converstaion to him, if that meant I was due back before I left??!! LOL He has a great sense of humor! Apparently I won't be able to take my crocheting onboard with me . . . I wonder if they will confiscate my pens too, they are much more lethal than my crochet hook?
Looks like we are right at the weight limit (70#'s) on the case with the DASN stuff & our clothes - glad they both have wheels! For one of my carry-on's I'm stuffing my bed pillows into a hand valise. Wade thinks I'm silly, but I know he will appreciate having them when it comes to sleeping on the flight. The other is great soft briefcase that was given to me by Penny,one that she got from the World Conference. It is large enough to hold all of my paperwork, tickets, purse, passports and oddles of munchies! LOL Oh yes, and two handheld games of Slingo & Yatzee
Got my nails done this morning, had trouble staying the full time and had to go next door and have a soda and a bit of a break - agitation just seemed to get to me and I started feeling panicky and claustrophobic - so left for about a half hour. That hasn't happened in a while. Usually I am able to control my actions, at least for the hour or so I am there, somehow just too much today. I was embarassed, but oh well! LOL
Watered the plants and trees really well and cleaned out the aviary. The quails have made themselves to home. The love birds which never had too much to do with the bottom of the cage are now down there, I guess afraid they will miss something and heaven forbid these new intruders get what might have been meant for them! The only one that seems to show agression is the one I call Zorro (actually the only one with a name), he is a black mask love bird. He has been trying to bite the legs of the quail - they were tolerant at first but now let him have it! LOL
We went out to dinner tonight - that was nice.
Not musch doin' today - trying to gather my thoughts and make sure I have everything gathered that we need to take on our trip.
I thought I would share with you a poem written by Mary Ann on the AOL Alz message board (for some reason I can't seem to get the link here, so if you'd like to write to Mary Ann drop me a line and I'll make sure to connect you!) It touched my heart so deeply, I've copied and printed it to save and add to my special envelope for my family.
for the happiness you've found,
After I have left you, after I have gone.
But I want you to remember.
Please try to understand,
With you my spirit still lives on,
though I cannot hold your hand.
Get on with life my darling
And I'll rest more comfortably.
I shall not forsake you,
Where you are is where I'll be.
Think of all the joys we've had,
And we've had quite a score,
Then go on about your life my dear,
And grieve for me no more.
I know you have loved me dearly,
Please know that I have loved you too,
And go on about your life dear,
That's what I'd have you do.
Finalized the stand materials for the conference, and got everything packed and ready to go for DASN. We are reviewing the video once again that Wade took in Montana at the DASN conference in June that will be shown at our booth.
Laundry, cleaning filled the rest of the day. Even managed to bake us some brownies!!
Wade has been busy trying to get the vehicles squared away - the Rv has to have a new fuel pump; the model A a new gas line, the Jimmy new brakes and wheel bearings - and all he was going to have done on that was an oil change! It's always something! LOL
It has been a better day.
Quite a pity party yesterday. I hate when that happens, more often now than I'd like. Usually I just keep it to myself and tend to grumble at those around me. But negativity is so very overwhelming and I have a hard time at being able to get beyond and just feel engulfed in hopelessness. Wade's new found ability to have empathy and not be dismissive has helped tremendously to help me talk through, sort through and find the reason behind, or a validation that my response although correct has gone overboard - helping me to face it head on, deal with it and move on. Then I have wonderful family who care enough to write, suppport and validate my efforts -- words can never express the impact that kind of support means to me. So today's a new day and we move on, luckily for me with this diseases affect on me - nothing stays the same for long and having talked through my whatevers it soon becomes forgotten, and the heaviness lifts. It is just hard getting through the 'all engulfing'stage of negativity.
Met this afternoon with Deborah at the Alz.Assn., she has ordered a special poster for our booth in NZ -- a beautiful window opening to the world - "A View to a Wider World" to go with our DASN theme.
Received another sponsor donation today from my old and dear friend Carol,(Thank-you,Thank-you,Thank-you!!) so I was able to turn in another $200 for Memory Walk. Linda Sheck the executive director there gave me T-shirts and a Memories in the Making calendar to include with our gifts to the ADI coordinator.
Went to a workshop in the evening for info & support for the Early Stage Patient, part of a series of workshops. Well presented, I'd sure like to see them take it that one step farther, get beyond the basic info mainly intended for the carepartner, and offer a workshop for PWiD with the same emphasis, concern and information directed at the need of the PWiD.
Feeling a bit lost today, like an old discarded shoe, guess I just need some time to sort through these hurt feelings and figure out whether I ever really was a part or just wanted to be so bad that I didn't see the reality.
Tina's neighbor flew her up from Carlsbad to surprise the kids with their first ride in an airplane. About the time we finished with breakfast at the airport, they showed up. Both the kids initially were SO excited to get to fly. Then Jake gave it a second thought and wasn't so sure. I talked to them when they got home ... Ashton told me it was totally awesome, and that they had both passed the test (hadn't gotten airsick)- she was really taken with the ocean and viewing the boats from so high up. Jake was just as enthusiastic, but more taken with the cars on the freeways that looked like little ants.
Very exciting news! Members of DASN International who will be attending this year's conference in Christchurch have been asked to participate in a "working group" which will make proposals and recommendations to ADI next year at their annual conference in Barcelona. This is also being attended by our benefactor to this conference, Peter Braun of the Los Angeles Alzheimer's Association. He is a most forward thinking man and has shown great support to me and DASN in all I have been able to share with him in the past, and I know will champion the DASN ADI proposal and our involvement.
We loaded up the RV early to spend the day at the beach. Didn't get but about 6 miles from the house when the RV died at an intersection and refused to start again. I couldn't believe that it took over 3 hours for a tow truck in the middle of this metroplis . . and yet when we were stranded out in the middle of the boonies it was closer to an hour.The kids were great, we laughed about another great adventure with Mina & Papa... even the puppies behaved themselves. Seems I was the only one trying to control agitation and irritation.
Kidz came home and swam, and Wade BBQ'd hamburgers for dinner, and I went back to cutting foamcore board for our display in NZ!
Getting frantic, so much left to do, so little time! Tina had called early in the day asking if I'd like the kids for the weekend. Boy, that was the hardest no. I can't think of anything more I'd like to do than have the kidz for the weekend, but I felt I just had too many things left undone and too little time. Overruled! Wade says they are just what we need - if they are here we will have to relax and unwind - no choice, they are both wanting our attention 110%! lol
I am so glad that they came . . . I have missed them so much, they are exactly what I need - somehow I'll get all I need doing done, just not today!
Attended the Patient and Family Services committee meeting this morning.The agenda was totally devoted to the needs of the person with dementia in our community and looks like our "PWiD" abbreviation for People WIth Dementia is catching on here as it was used in the agenda outline! So, many good things happening in support of the PWiD! I was also given a copy of Brenda Avadian's new book and am looking forward to reading it, especially after friends on two of my cg message boards have said it is a "must-read".
I think we are both feeling a little pinched for time, finishing projects, figuring out how to get them where they need to be, what to wear. - So we decided to forget it all and headed for the car show. Seems we both have champagne taste (too bad we have a beer budget
It was a nice break, I've really been stressing myself out lately - I've become such a critic of myself, in one take I am very proud of the materials I've developed for the stand at the conference and am confident they will present DASN in a very professional mannor, and yet I am so unsure that they are what the rest of the bunch want - totally unconfident in my abilities and accomplishments - very frustrating.
Up early this morning for a breakfast meeting with the Kawanis club. Following a brief talk about Alzheimer's Disease we had about an hour long session of questions and answers - very astute questions - a most enjoyable engagement left me feeling like I had done my good deed by being able to share my knowledge with them.
I looked into getting the brochures mailed to New Zealand . . guess I will have to figure out how to pack them all the shipping costs were estimated to be $389 UPS! Way too much for our limited DASN budget.
We met a friend and her daughter for dinner at a local weekly Harley gathering. It is just starting up, so not too many there . . actually more Indians than Harleys, they are really becoming popular again. Absolutlely perfect evening for a ride, all we needed were shirt sleeves.
Loved the mail today!! There were two more sponsorship donation checks, one from PRI (Pharmacology Research Institute)and another from their director, Dr. Wilcox - his support, concern and guidance are very much appreciated.
Did a bit of painting on one of our units, and trimmed another tree. Bit of a sore shoulder this evening.
Laundry day . . . yuck! Went by the Alz. Assn. this afternoon and met with Deborah O'Connor about polishing up the booth presentation for ADI. After the Memory Walk have some new ideas to share. It ended up being a great brain-storming session with Karin & Jean helping out.
You know I was expanding on my thoughts about the $5.00 . . . here in OC there are 50,000 with AD if just one member of each family (and we know that the Alz. Assn. services so many more in each family) sent in the monthly $5.00 that would be $3,000,000.00 a year! (Doesn't the sound of Three Million Dollars seem awesome from a piddly $5.00??!!!!!)
Breakfast at the airport, and a VERY lazy day for both of us. The laundry hamper doth overflow, but hey it will be there tomorrow! LOL
Had a good visit with Wade's cousin Dale and his son in law this evening. They are truck drivers from North Carolina, so glad their load brought them close by so that we could enjoy dinner and a visit.
Today I had a great day. I, along with over 6,000 others, participated in the Memory Walk for Alzheimer's Disease at the Irvine Spectrum. We walked for an Association that is "Someone to Stand By You" - it has been an honor to stand up in support of them.
Patriotism was the theme of the day evident in the display of "red, white & blue" in clothing, decorations, music and spirit. It was so wonderful to be joined by my family in support - My HUSBAND WADE (with him none of my participation would have been possible), our daughter Tina & her family, Todd, Ashton & Jake, my cousins Colette,Bob, Louise, Peter and his sons Chris & Nick (who carried the banner),Maranda, our friends Barbara and Allan. And in spirit my sponsors: my Mom & Dad, Frank & Jane Thees, Fred Poitras, Mickey Sager, Dr. Bruce Gibson
At earliest count over half a million dollars was raised just at this venue. Part of the proceeds will be donated to the New York Chapter, as their Walk had to be postponed, but not the need for support of those with dementia.
Walks are nationwide and the monies raised stay within each individual community to financially support the myriad of programs and services available for the families dealing with Alzheimer's Disease and dementias in general.
Our local Association here in Orange County is taking that one step more and reaching out to patients globally with their support of Dementia Advocacy and Support Network (DASN) Int'l. I was priviledged to be part of the Association's booth at the Walk and handed out materials specifically aimed at the early stage patient. I spoke from the stage to the crowd and thanked them for making a difference throughout the year - last year we were only taking about and hoping for a vaccine, this year we are in human test trials. The group that gathered in support of the Walk were for the most part recipients of the Alzheimer's Associations continuing services and 24/7 support, and as anxious as I to see an end to the devastation in their lives -- it is empowering to know that for just one day we can join together and make a difference that will affect our local community of over 50,000 people with dementia.
But, today I am also thinking, perhaps I should take one step further - maybe only a little step, but perhaps if others join me it will become a private march. I am going to try and remember
Picked up the earplugs today from Integrity Construction Services Inc. - I want to be sure that they get credit for their generosity so made labels for the packets -- You know I just love more projects!! LOL
Got a wagon - so we're good to go for tomorrow! I finally got my umbrella decorated, since it's a dark blue and white golf umbrella I just added stars with my fellow PWiD's names on them -- I always like bringing my friends along! It will be topped with a posted size picture of the "4 generations"
Worked on our team banner today. I found a large table cloth, navy with white stars. Folded it over a pole and tied it up at each end with red garland. Attched a sign that says: " Phamily and Phriends . . . Bubbling With Enthusiasm - Bursting With Hope" then a smaller one with a flag attached to it that says "We're With You Every Step of the Wave"
Getting excited! The pile before the fireplace grows as I gather the materials we need to take for our Walk and for the patient information booth. - Can't find anyone with a wagon to borrow so think I'll have to go buy one, or we'll never be able to haul all this stuff!
Shopping day! Groceries and back to the party store for a bubble machine for the Walk. I had already decided our "Pamily & Phriends" team would have bubble guns, but when I saw this I couldn't resist! I've always loved bubbles, they do make me smile! Now I just have to tie it in with our banner theme!
I heard back from Sue at Integity Construction Services Inc. here in La Mirada - they are going to donate two cases of ear-plugs for the Walk! Being as they don't use them themselves they are going to have to make a special trip to purchase them -- is that great or what??!!! They will be made available for the people with dementia at the walk to help with the overwhelming input of sounds, and any leftover will be taken with us to New Zealand for the PWiD there.
Uh, oh! Today I called to find out about the ear-plugs that were supposed to be donated for the Walk Saturday - no longer available. I called the La Mirada Chamber of Commerce for construction company referrals, hopefully one of them will come through -- I don't know though this is really short notice. I am at the countdown now for the Walk Staurday and need to get all my ducks in a row!
Well, I did a really stupid thing this morning! Got confused and ended up doubling my medication dose. By 10 I was light headed and queasey on my stomach, and stayed that way till late afternoon.
We picked up stuff to decorate my umbrella for the walk, and things for my walkers - $73 worth!! Watched a good movie in the evening, Along Came a Spider - maybe the extra Aricept wasn't so bad afterall. It was a good plot with some unexpected twists and for the most part I was able to follow it.
Finished folding the last of the brochures this evening, I will really be lost as to what to do with myself when this whole Memory Walk, ADI project is over. It has been good for me to stretch myself, my creativity has flourished again and it is a good feeling of accomplishment.
The moon is exquisite this evening! First full moon of the month, there wil be another one on the 31st officially a 'blue moon' (always a good karma day!! LOL!)
Happy 8th Birthday to our Granddaughter Ashton! We celebrated with her last weekend, other grandmas turn today.
Back to a bit of a routine as we went out to the airport for breakfast. Seemed strange as most of the planes were gone. Fullerton is a small local airport that is under flying retstrictions, so I understand most of the planes have moved to less restrictive sites. Wade went off to a Harley rally, I decided to stay home - too hot (in the mid 90's) and I really didn't feel the ability to cope with all that today. Kinda feeling sad about not being with Ashton today too. Did a bookkeeping project for him, it took me over 4 hours! Seems it takes me longer and longer to do things right. Beautiful moon tonight!
Ten days later and I am finally back to my journal - I've been busy!
We finalized the inserts for the patient information packet for the Memory Walk. Orange County Alz. Assn. printed, coallated, stapeled, and Deborah O'Connor even delivered them to me! Wade & I labeled & stuffed over 200 purple folders (thank you Penny & Joe!). So now we have these lovely folders -- "Alzheimer's Association and Early Stage Patients Working Together To Empower You With Knowledge" filled with a DASN International brochure, an information page on Early Onset Dementia, and a 5 page paper on "Learning To Live With Dementia" ready for next Saturday's Memory Walk. Wade & I also prepared a 2 page brochure, "Your Global Connection To Empowerment" with links to PWiD friendly sites and information, that will be shared with Internet users. And we are still folding brochures!! lol
Members of our DASN International group have been making great strides! My congratulations to you all!
Carole Mulliken (my co-secretary in DASN International), presented to the St. Louis (MO) chapter a talk and discussion on how what the needs are of the early stage patient and how we can work together to achieve needed support and services.
Thad Raushi, has had his book "A view From Within: Living With Early Onset Alzheimer's" published by the New York chapter of the Alzheimers Association, due to be released next month (sure hope I can get a copy for the Memory Walk and the ADI conference to share!)Also he is going to be presenting talks at the Dec.7,'01, 2nd Annual Early Stage Alzheimer's Conference in New York City, and in April '02, at the Joint Conference of the National Council On Aging.
Peter Ashley has the distinct honor of being the first PWiD elected to the Alzheimer's Society Council of the United Kingdom! He also left the sales staff of Novartis on their feet with a standing ovation to a talk he presented.
Have to be honest, I really didn't want to come home!We left Sunday about 5, and stayed at a reststop about half-way, then got into Silverlake about 1. We travelled about 7 hours (total) from our home to Silverlake, off the June loop - up from Mammoth, in the Sierras. Nice campground across from the lake where we met up with our cousins Bob & Louise (they are the ones who just celebrated thier 50th weding anniversary)
Fished Monday afternoon after we got set up, and enjoyed fresh trout for dinner! They were on the small side, but sure tasted wonderful thanks to our chef extrordinaire Wade!
BIG bear at the trash cans and fish cleaning station in the evening, and two lovely deer feeding next to my cousins camper in the morning. Didn't do very good fishing Tuesday - but the day, the company and the scenery couldn't have been any better. We managed to have enough fish for another meal in the evening thanks to Marc from Oceanside, who shared his catch, and the evening.
I have spent much of my quiet fishing time here thinking about the conversation with the lady from school on Sunday and trying to remember -- what a hollow feeling. Another soon took it's place though.
My cousin Louise and I were talking about the cramped kitchens in motorhomes, then the conversation went on to an invitation to her house for Thanksgiving -- and I thought of how tight her kichen was at her home . . then I tried to recall my kitchen. What came to my mental image was my kitchen in our old home where we lived over 22 years ago, it took me a long time to remember the kitchen that we have now -- had to keep cluing myself... okay, where's the front door, that's right the kitchen is near there, I could remember the floor tile but not the layout for the longest time, quite disconcerting.
My cousin Bob has polio. His stories of his days after diagnosis are quite compelling. One thing that really struck me though were his comments about the early years, when he was confined to a bed to die - no hope was given till Sister Kenny came along and offered a radical new method to the doctors - - that of rehabilation. The medical community was very resistant, she perservered and gave many back thier lives.
Is this so different from our struggle as DASN Iternational early stage patients, who are seeing the fruits of our labors to not accept the coffin nails but to strive to find new ways to accomplish those tasks that may be forgotten, replace devastation and despair with hope?
Back to work, the break though short, was really good.
Most unusal thing occured this morning which has left me feeling, oh I don't know how to describe it -- empty, solemn. I went to the store alone this morning and ran into a lady who had seen the flyer in the newspaper for the Memory Walk with our 4 generations picture in it and had recognized me. She went on to say how glad she was to see me, and on to recount numerous times we had had together working in the elementary school. Of course knowing that I had Alz. , everything she said was complimentary and of good times. I drew a complete blank -- I had (and still have) no idea who she was. What she said in regard to events 'felt' right, seemed to be deja' vu - then gone as she recounted stories. But, I honestly couldn't remember a one. Those I guess you would call my 'middle memory' years -- where did they go? And when? I felt so somber, enjoyed a bit of time with friends in chat, but was really glad when Wade decided we'd head out this afternoon for camping & fishing. Waht an odd empty feeling, as I still try to remember. An Inspiration to be shared:
Strength and Courage
It takes strength to be certain,
It takes courage to have doubts.
It takes strength to fit in,
It takes courage to stand out.
It takes strength to share a friend's pain,
It takes courage to feel your own pain.
It takes strength to hide your own pain,
It takes courage to show it and deal with it
.
It takes strength to stand guard,
It takes courage to let down your guard.
It takes strength to conquer,
It takes courage to surrender.
It takes strength to endure abuses,
It takes courage to stop them.
It takes strength to stand alone,
It takes courage to lean on a friend.
It takes strength to love,
It takes courage to be loved.
It takes strength to survive,
It takes courage to live.
May you find strength and courage in everything you do, And may your life be filled with Friendship and Love!
Fina Lee Bentley was here this afternoon to interview me. She is the hostess of "From The Inside Out", a local program. I did my best, but feel like I have forgotten something important. But, I guess that is normal for me.
Funny how something like this just absolutely exhausts me!
We spent much of the afternoon at Toys R Us. Our grandson, Brandon in Texas is turning 4 next week and our granddaughter Ashton is turning 8. My! How time flies! We haven't been in a toy store in some time and really enjoyed ourselves - the new GI Joe stuff is so cool -- puts 'ole Barbie stuff to shame! LOL We also found "our" Christmas present, a Gameboy II. We'd never seen one before, and really haven't been into those type of computer games not having kids in that age range - but, wow the football looked like real people - John Madden even calling the plays! We must have stayed and watched a fellow play for over an hour. Sure took our minds off things at hand.
Wade and I had an early morning meeting for Patient and Community Services with the Alzheimers Assn., support groups was todays focus - next week we are on to early stage patient services! The Orange County Assn. is proving to be pioneering in their forward thinking in accepting us as viable contributing humans even after diagnosis ! There was a gentleman there this morning who gave a brief talk on advance directives - very timely for me! Turns out Wade thought that our Living Trust had that covered - NOT! So we will be looking into taking advantage of this service. If you might be interested you can check them out at www.alwr.org ( I do not endorse them ( don't know enough about them yet ) - I DO endorse an advance directive!
We headed over to return one of my "impuse buys" and stopped and had lunch at the Rainforest Cafe. Neat place, it really does rain there and has animatronic elephants, gorillas, snakes and the like. Evening was filled with what else?? Brochures & bookmarks! lol
This was in my mailbox this morning . . . feeling rather quiet today
When you come to the edge of all the light you know,
and are about to step off into the darkness of the unknown,
Faith is knowing one of two things will happen:
There will be something solid to stand on --
or, you will be taught how to fly.
~Barbara J. Winter
Went to the dentist early this morning for a second opinion on a major mouth overhaul! LOL On the way home we stopped by UPS and got my brothers Un-Birthday package off to him. Then we went on to the Kelly paper company to exchange some packages of paper. I had picked up two that were border paper -- in a hurry all I saw was the "B" - I needed brochure paper, they were very nice about the exchange. Wade had a client in in the afternoon, so I made myself scarece and did some grocery shopping. The weather was cool today, looks like fall might be on the way! Sure felt good!
Early breakfast at the airport. Wade dropped me off at home and he went off to the computer show, unfortunately it isn't untill next week, so he decided to go off for a short ride on the Harley to one of the local Harley gathering spots, Cooks Corners. I needed some alone time in the house to catch up on some cleaning, and laundry. I always do better at cleaning when I'm alone. We have another TV crew coming in this week, so I need to tidy up a bit more than usual! lol
Well my #3 status didn't last very long, this evening I'm #37! LOL
Quiet day - just worked mainly on the stuff for NZ. I decided to ignore it all in the evening and sat down to watch some TV with Wade and work on crocheting a few more of the baby hats - I have been ignoring that little project of mine, and with winter coming they will be needed more than ever. I was able to get three done last night - talk about nervous energy!
Tried REAL hard to do a whole lot of nothing today and was fairly successful too! Just seemed like I was 'not with it' the entire day. Took two Memory Walk T-shirts over to my Great Uncle Fred. He seemed very pleased. He will be heading back home to Maine next Wednesday I believe.Went by and picked up an Un-birthday present for my brother Alan. I was supposed to pick these up when we returned from our Montana trip in June! Oops . . . oh well, better late than never. They are wooden cut outs that you construct to make dinosaurs and insects. He is going to use them as patterns and make larger versions out of metal - saw a couple when we were in Montana - they really are 'cool'! A good winter project for Montana for sure!
When we came back from shopping there was a message left in regard to filming me for a piece on Early Onset. They are going to be here next Wednesday or Friday. As I said NOT one of my better days, so I agreed to it even though I have no idea who or what the end result of the interview is for. Oh well, what does it really matter - it is one more time people will be faced with the words Dementia and Alzheimer's, even if only in a promo -- sooner or later the message will be heard.
Also I was glad to hear the voice of a dear friend, whose life is in torment because of the fallout from Alz. D. , but, she is a strong woman, and it is good to hear her voice and know she will be okay. She certainly has been uppermost in my thoughts and prayers lately.
We worked on brochures and bookmarks in the evening, stayed up much to late again. (I probably can 'cut & paste' this statement to my journal for the next few weeks! LOL)
I must have been featured sometime today as 'Site of the Moment' - I'm #3 at Topsites this evening, and this morning I was 53rd! Thank you all! that was really a pleasant feeling to call it a day with!
Finally took the time to go through my mail - usually it's just bills so I put them aside till I'm ready to pull out my checkbook - In among the bills was an envelope addressed to the Memory Walk and a very generous donation of $50 from my brother and new sister Gayla. Your support is VERY appreciated. I hope all of you reading this will plan to participate in your local Memory Walk and support them Nationwide. All of the monies collected stay within each chapter, going directly to the community it serves. If you don't know who to sponsor - here's my hand waving in the air!!!LOL - my mailing address is 14702 Libra Drive, La Mirada, CA 90638 - I am very proud to be part of the Orange County and Los Angeles Memory Walk. For the last two years Orange County has been the largest Walk nationwide - drawing over 6,000 walkers! It really is a great day of fun, food and celebration.
I worked on finishing up what I could this morning on patient handouts for the Memory Walk. Finished up the section on safety, and the beginnings of information specifically aimed at Early Onset. Allan met Wade and I at the Alz. Assn. and joined us in the review meeting. It was nice to meet him in person, he is very enthusiastic about helping - he may live to regret volunteering to me his help!!lol It was good that he did join us , he had many insightful comments - gosh, he even went home and wrote a terrific section on diagnosis & work.
When we returned home, even though it was only about 4 I was exhausted - sore from all the yard work yesterday, and mentally on overload. Spent a bit of time checking out the new 'home' for our DASN chat, visited a bit with online friends - and did little else, besides fold brochures (Wade has them going non-stop it seems, so there is always more to fold!)
Gosh, where to begin . . . so much is lost when I don't make a point of doing my journal, I think the best way is for me to start doing it in the morning - come evening I am just too tired.
The DASN board approved my brainstorm, so we have purchased paper stock for 2,000 brochures,100 letter heads and envelopes. Wade has started printing during the day, and we fold while we are watching TV in the evening. We've also started on the bookmarks for New Zealand, another evening project - cutting ribbon, gluing on flowers and securing them to the bookmarks - my fingers sure are tender from punching out the holes in the bookmarks and the hot glue burns! LOL
We spent Labor Day afternoon with Penny and Joe as they had invited us for lunch. Wade really enjoyed his walk on the beach with Joe while Penny and I gathered together materials for the Patient booth at the Memory Walk. We rode the Harley taking the coastal route to their home - really a lovely day.
Sunday was spent at my cousins home, they hosted a 50th Anniversary party. The daughter of the feated couple, Colette, did such a great job of putting it all together - hard to put into words what a really wonderful lady she is. I volunteered my services in the kitchen preparing the sandwiches. Colette managed to surprise them by having her son, their grandson, and his daughter there from Colorado, and our great uncle Fred from Maine.
Speaking of great Uncle Fred, he also gave me my 1st official sponsorship donation for the Memory Walk - $100.00 !!! Made me realize I better get on the ball and get these brochures mailed out to others I hope will sponsor me -- another important item I've been overlooking! I did get most of them mailed off Tuesday, but I'll have to go back to the Alz.Assn. and get more as I have been passing them out and sharing them where ever we go. It is surprising how much more credibility I seem to have with people when they see our "4 Generation" picture in the brochure.
I was able to compile information on "Learning To Live With Dementia", the handout I am working on for the Memory Walk and the Orange County Alz. Assn. I still have more work to do on the Safety section, and one on relationships, but I forwarded on what I did have completed and we are meeting this afternoon (so that's what I'll be doing after I get this posted *VBG*!)Also joining Wade and I at the meeting will be a new friend, Allan. He contacted me via email - turns out we live only about half hour from each other. When I first opened his post I thought it was from my brother, same first & last name, only my brother uses just one 'l' in his first name! We had a great phone conversation, he is newly diagnosed, and I invited him to meet me to go over the materials - who better to critique it than the person it is intended to benefit?!
Yesterday, we spent at the apartments trimming trees, rose bushes and doing some weed pulling that our gardeners seem adverse to ... really don't blame them - no fun! Wade found a litter of newborn kittens. We had brought along a pet carrier in hopes of catching the mom that we had spied on the 1st about ready to pop - we were just a few days late. We placed the kittens in the carrier on a sheepskin - they sure liked that - and cuddled, and huddled and slept together in the soft warmth. I placed an open can of catfood in the back of the carrier for the mom, but she never did come back, and we were there well over 5 hours. We brought them home, trying to find a someone in the local rescue group to care for them - unfortunately there are so many abandoned kittens that they have no more 'feeders'. Newborns need to be bottle fed every two hours (these little guys still had their umbilical cords attached !)I bought an emergency kit from the pet store and bottle fed them while they were here. We had no choice but to call the animal shelter - hopefully they will be placed with a nursing mother there.
Wade had a client in the office, so I made a run to the paper warehouse. I had a brillant idea come to me in the middle of the night, so I went over to check on the cost of buying paper directly from the supplier. I am still trying to get the brochures for DASN done at the most economical cost to us - being a new non-profit group our funds are very limited. Grants have been applied for, but they take time, and we really need to get brochures out to our membership for thier upcoming Memory Walks and DASN's representation at the Alzheimer's Disease International conference in late October. My thoughts were that we might be able to do it more economically ourselves by buying a printer & paper, then printing them ourselves. This will be a big undertaking, but worthwhile - yikes what am I saying?? Print and fold 10,000 brochures! Sort and mail them out to the membership? Print business cards too!!!I have the Memory Walk booth stuff to ready, bookmarks to make, and ADI booth materials to complete. Boy, will I ever be glad when October is over!!! LOL
I wasn't able to find the paper we used for the original brochure, but found a very nice comparable one and it also has matching paper for business cards! So I spent about an hour getting the text reformatted for the brochure and I'm going to send it out tomorrow for approval. - Sure wish our membership was closer some days!
Chat continues to be interesting with the added voice feature - what a cacophony of accents!! LOL It makes it nice to hear what someone is saying as opposed to just reading - gives a whole new dimension and character.
Connected with Penny, she is under a lot of stress, so here publicly I'm letting you off the hook my dear - send the materials back - by hook or crook we'll have them in ready for the Walk! Not to worry!
Well that didn't work! I am trying to learn to do more a little at a time with my web site, unfortunately written instructions are next to impossible for me - thus centering my date just didn't work this time! Guess I'll have to try again another day. I did change the font color back from blue again though with no harm no foul!!lol
It was a beautiful day. We went down the coast to the Quail botanical gardens for my cousins wedding. What a beautiful location. We were able to stroll the grounds before and after the ceremony. A very non-traditional ceremony, with the most delightful Irish priest in attendance. The reception was held at her friends 'cottage by the sea'. In lieu of gifts (this is her second marriage) we were all asked to bring our favorite dish and the recipe for their files. Needless to say we ate well! I thought it a rather unique idea (though others called it tacky) - they were on a tight budget, yet wanted to celebrate with family & friends - I can assure you I spent far less on my chicken Alfredo than I would have on a gift - and enjoyed sharing something of myself that will be usefull.
The day was most enjoyable - traffic was miserable coming home, but hey we survived, just expectedly goes with living in Southern California.
August 25. 2001
Wade left early with the Model A decorated with white flowers and just married signs tucked away in the steamer trunk to be added while he waits for the wedding ceremony to conclude. He said that they were really a cute couple - he always enjoys driving people in the Model A.
Tina, Ashton and Jake met me in the evening at Leisure World and we watched the Aquadette's performance of water ballet. What fun, these ladies are 'seasoned citizens', most on their early eighties. The kids and I are going to have great fun seeing if we can mimic thier water skills in our pool! (Thank you again Micky for this lovely gift!)We ran into an old and dear friend there, Marsha, she was the original social worker/counsellor that helped me when I first went to the Alz. Assn. - I hope this time we don't lose touch.
August 24. 2001
Did most of our packing last night, so it was just a matter of hauling it all down to the car --sure came up easier, than it went down!
I stopped at the Orange County Alsheimer's Assoc. on my way home to check with Tara about the booth for the Memory Walk. Actually I was dragging my heels just a bit, knowing all I would have to do when we got home! =vbg=
I was able to make Wade some new business cards for his "Model A Memories", even figured out how to scan, save and retrieve a picture of the car to put on the card! Laundry's done, just about everything is put away - and hey! My journal's even up to date!
Took some time this evening to visit with friends in chat -- fun new feature to our DASN chat site. We are now able to talk with none another - nice to really be able to hear our friends speaking - especially the New Zealand accent!!!
I seem to not be able to spend my time wisely anymore and end up with so many pressing things left undone, always playing the catch-up game. I have really pressed hard this week at the beach in the evenings to get materials ready for the Memory Walk and New Zealand. I even asked Resa who has created this new site for me, to please hold off and put it on the back-burner for a bit - I've just felt so overwhelmed with deadline demands. Wade asked me when we came home when the Walk was, and I told him next weekend - he scolded that it hadn't been put on the calendar. I told him it was always the first week in October. Yikes! Reprieve! I forgot all about September, here I was thinking all this needed to be ready for next weekend. SIGH - where would I be without him to keep me on course??
August 23. 2001
Our last day here at the beach - check out is at 10 in the morning tomorrow. We held on to the covers this morning, then took a ride over to San Juan Capistrano and visited the old section of town - many of the homes date back to the early 1800's are have been lovingly restored. Many art galleries and small cafes.
From there we made a quick stop at Joe & Penny's. Joe had left his favorite hat last night and we needed to return it. Joe really has a neat computer set up - plenty of desk space around himself. He and Penny were working together, getting him aquainted with the letters and where they are to be found on the keyboard -- very confusing for sure!
We made our way back down to the harbor for a lunch of fish & chips, my favorite when we are here. The 3/4 day fishing boat came in while we were there - looks like they didn't have very good luck at all - the wind had really picked up today and the seas were choppy, and the fish weren't biting.
Back to the time share, we checked out bikes and rode through the Doheny beach area. It has been a very nice week - back to the salt mines tomorrow - Wade has a list a mile long for me in the office!
August 22. 2001
We hopped on the Harley early in the morning and came home (just a 45 minute drive) to check on the animals, mail and to do a bit of watering. Our neighbor has been keeping an eye on them for us... but, we also wanted to come home to go to the local swap meet. Wade is looking for a yellow "toad-stool" hat. He has a wedding that he is chauffering this weekend in the Model A, and he can't find his hat!
Penny and Joe came by this evening, and we worked on more of our materials for the upcoming Memory Walk patient information booth . . . so much to do, so little time!! (I think that is the story of my life these days!! lol)
August 21 . 2001
We enjoyed a lovely day fishing in the Southern California waters off of Dana Point. We took the half-day boat, "Sum Fun". They provided us with poles, bait and tackle. Beautiful weather wise too, a gentle breeze and temperatures in the mid-seventies. Most everyone was catching sand bass and mackeral, although there were a few Halibut, sand shark and black bass pulled in. We caught our share of fish but ended up with only two sand bass, all the rest were too small or in the case of the mackeral ones we just threw back. Those mackeral sure caused problems when caught - they like to run, and with so many fishermen aboard there were always tangled lines somewhere! Our sea bass made for a wonderful dinner. We went up to the top floor sun-deck and watched the sunset over a glass of wine and enjoyed visiting with others at the time share.
August 19 . 2001
Well, this is a first for me! My journal has not been up-to-date now for almost 2 weeks. What is happening is that I have contracted to finally get a web page that I can be responsible for. As many of you will recall my first on-line journal was gifted to me by Laura Smith. Laura gave the gift that kept on giving, many times at the expense of her patience and energies. She has been a faithfull webmaster, posting my daily journal for over 18 months - as I said, as a gift to me. I have tried to figure out how to get my own web page started and have been unsuccessful in more than one attempt.
. . . So, what you are reading is my very 1st journal entry, that I am actually entering to my new web-site. My new address is www.janmina.com (oh, hey you knew that didn't you ??? You are here! LOL As far as I can figure there is no spell check - - uh, oh! I'm in a whole heap of trouble!
We had a great visit with my brother Les and new sister Gayla - - it really is surprising how much we are alike! I had purchased T-shirts for us in downtown Las Vegas that were a beach cover-up type with a picture of a voluptuous young girls body in a thong bikini painted on it. Gayla put hers on and so I followed suit - gosh, what a fun time we had with the stares, giggles, and second looks we caused!(Thank goodness that 3rd double scotch had kicked in LOL!)We left after breakfast on Monday,they stayed on and will take the plane home to Tacoma on Tuesday, and since it was so hot decided to stop along the way for an ice cream shake at Peggy Sue's Diner. Well, that's as far as we got under our own steam. The RV wouldn't start, so we had to be towed into Barstow. Naturally the repair shop was closing as we pulled in, so we had to spend the night in the next door Hotel. We were off and running by noon after they replaced a clogged fuel filter - guess a common occurance in these high temperatures - especially in a Ford engine. Puppies were sure glad to have us home.
We left again on Friday for a week at our Time Share at the beach in Dana Point (Southern California). Jake and Ashton came for the weekend, today I'm trying to get aquainted with my new home page, and tomorrow we are booked to go ocean fishing - - I am really looking forward to that.
So, we are pretty much up to date - and I will do my best to keep my journal current!
August 8, 2001
HAPPY BIRTHDAY TO MY BIG BROTHER ALAN! He sent me the nicest card it read:
Thank you ... You Are A Star! You are truly my BRIGHT SHINING STAR, while I'm just your grouchy old brother way out in the wilds of Montana. Thank-You for remembering that I am now as the same as the speed limit (55) in some states. Love Ya Sis, Alan I really have been blessed to have such a wonderful brother!
August 7 . 2001
Well, the train didn't get in till after 1 in the morning (better than the predicted 2 anyway!), as tired as we all were we still stayed up and visited for an hour or so. I had a tough time getting to sleep, my back was achy.
I am so excited! A dear friend has purchased tickets for our daughter, grandkids and I to go to the water follies at a local senior retirement community. I have been wanting to take the kids to see these wonderful 'seasoned citizens' who put on a great water ballet show. Both kids are always trying to outdo each other in the pool but have never really seen 'water ballet.' I was so disappointed this last Olympics that they weren't shown on the TV coverage other that brief clips. So it will be a real treat for us all on the 25th of this month. I had called a friend who lived in the community to pick up tickets for us -- and Now he has made them his gift to us. Thank you so very much Micky, your continuing friendship and support is very dear to me.
Most of the morning was spent resting & relaxing by the pool - I'm certain Les is going to glow like a lobster tomorrow! We all climbed into the Model A for a ride in the evening - Les & Gayla in the rummbleseat. Passing by a lumber yard on the way up the boulevard we noticed some old cars and the In-N-Out Burger truck. We thought that they were having a car show so turned around and went back -- well, no car show but a free meal of burgers! That was really nice since it was one of the things on our to-do list to visit an In-N-Out burger as they make they best burger here in So.Calif. We headed down through the tourist area, through Knott's and drove under the World's largest wooden roller coaster. Then cruised on down to the Crystal Cathedral - we were in luck the organist was practicing. The cathedral and grounds are magnificent. I think one of the things that stuck me most were the various statues around -- here was depicted a smiling, laughing, caring Jesus in various scenarios with other statues -- usually he seems to be depicted as solemn -- here his expressions were joyous. We then went on to Downtown Disney. Specialty shops (collectibles, confections, memorabilia, etc.), restaurants (Rainforest, House of Blues, etc.), the ESPN Zone - an adult arcade of sorts where they also broadcast from live, and an atmosphere of pleasure. The street is wide with area to stroll, sit and enjoy. We watched the fireworks from Disneyland (spectacular!!!) and called it an evening. It is always fun being out in the Model A, lots of smiles, waves hand waving. I am so glad that Les and Gayla are here -- strange how nice it is to have guests that don't give me the uptight feeling of guests, just comfortable company.
Just one thing that has troubled me thus far. Wade had casually asked before they came if they smoked, and I had told him that I didn't think so. They both do smoke -- but, this is not the issue. We stayed with them in June for two days -- it is upsetting to me that not only didn't I recall that they smoked, but also that they had a dog. Our pups were in the house and surely played with and shared the area with the little critter! I am trying VERY hard to remember what the dog looked like - I haven't a clue - Think I'll refrain from asking a bit longer maybe it will come back. Time for bed it's after 11.
August 6 . 2001
Last minute cleanup in preparation for Les and Gayla's arrival. Puppies bathed, groceries stocked and unfortunately a car repaired. We've been noticing a musty smell when we ran the air conditioner, and thought it was the air conditioner overflow maybe plugged. Something we knew needed attention. But today when Wade was vacuuming the car on the entire passengers side front to rear of the car was flooded. We have double car mats down so I hadn't noticed. Apparently some kind of radiator line -- heater coil I think is what he said -- had been slowly eroding, Luckily the dealership was able to get it in and repaired today. I tell you it is really a good thing that we have company at least once a year, it really is the only time this house gets the attention it needs! And our vehicles too! They were supposed to arrive on the train at 9:15 but there has been a delay so we won't be picking them up till about 2 am. They must be exhausted -- this has certainly turned out to be an adventure for them!
August 5 . 2001
Nice leisurely breakfast at the airport, relaxing day -- work will keep till tomorrow!
August 3/4 . 2001
We have invited the family over next Saturday to visit with my brother Les and his new wife Gayla, so now some outdoor maintenance is in need. Mainly removing the diving board is the big project. It was cracked last season, and with people using the pool next week we need to make sure no one injures themselves -- somehow telling people that the board is cracked is just not deterrent enough. Also the Jacuzzi needs to be refilled and readied.
August 2 . 2001
Still have a great 'afterglow' from yesterday - I am so pleased to have finally been able to meet and speak with Peter Braun, really his words to me made me feel very safe, secure, and too, cherished as a person.
Had a DR appointment this morning. I was hoping that he could help with my increased anxiety attacks and general 'snippiness', but he said he prefers to wait until my annual reeval next month before making any changes in my medications. He did give me Zanex for the flight to NZ. I was concerned since it is over 13 hours and that has become a big phobia as the AD progresses, claustrophobia.
Penny & Joe came by this afternoon, and we brainstormed about our booth at the upcoming Memory Walk for patient information. I am trying to maintain and not be overwhelmed by all that I need to do in preparation for this and the ADI presentation. Penny really surprised me by bringing in over 200 purple (just happens to be my favorite color! lol) folders that she had bought -- just perfect to hold the materials we are hoping to pass out at the Walk to patients -- and, the most wonderful peaches! The first ones I'd bought this season were really yucky, so I've bypassed them in the store -- but these were wonderful! Guess I'll have to try again!
Rather sad note to the end of our day as we attended the viewing of a friend who had passed away with the complications of her 7 year battle with cancer. We are sad to say farewell, but know that her suffering has ended at last. Soar free with the angels Carmen.
August 1 . 2001
What a great day! Today Wade and I went to the Hollywood Racetrack for the kickoff luncheon for the team captains for Memory Walk 2001. We were glad to see Shelly Fabares there to speak, as she has been of frail health of late recuperating from a liver transplant - As usual she gave an encouraging and uplifting talk. I got to meet my new friend from the Alz.Assn. in Northridge, Laura Rice . . . what a beautiful young woman (I personally suspect that maybe she moved out this way to be in the movies
July 28 . 2001
Well, our trip started out to be a disaster. We left at noon (as planned) but about 10 miles down the rode we blew a left outside tire (they are duel on the rear) on the freeway. Wade had no problem pulling it over three lanes to the side of the road, where we waited over 2 hours for a tow truck to change the tire. Then back to the tire dealer for four new tires, and another 3 hours wait. I can't believe how good Jake was through this all -- took it quite in stride -- not at all typical for a 5 year old. We arrived at the campground about quarter to ten in the evening -- even the guard had left for the day! Didn't even bother hooking up to the sewer or electricity -- just backed into our site and turned out the lights!! Most of the next day was spent fishing, Jake really is a natural at casting. No fish were caught, but we had a great time trying! We spent about an hour at the pool, but Jake was eager to get back and catch a fish. Next morning after pancakes for breakfast we took Jake home, and Wade and I went on into the Orange County Alz. Assn. for a meeting with their rep., Joe & Penny to discuss the patient information booth that will be at the Memory Walk. The only thing that they had to offer in the way of handouts was from Canada. Knowing how good the Canadian site was in the way of information for the person diagnosed with dementia, we took a look at more of the information that they had to offer. I think Penny made a great suggestion in that we (meaning the OC Alz. Assn.) should work hard this year to develop information of our own that can be shared for the newly diagnosed. Penny had done her homework as usual, and came prepared! Time is too short this year but next year watch out -- this lady has great ideas! I especially loved the "Forget-me-not" flower packets that could be imprinted with our name. This year because of time constraints, guess we will keep it pretty basic, and geared toward the early stage patient with info about DASN, local day services, what to expect after diagnosis, etc. I'll be meeting with Penny later next week to iron out the wrinkles.
When we got home I called the DR and made an appointment for Thursday. I need to have an adjustment in my medication I think, I am getting far too 'snippy,' short tempered and far too easily agitated. I hope it is just because of the recent overload, but am naturally concerned that I am slipping a bit more. About all I could handle of the meeting today was an hour, and I started to quickly fade, truly have no idea what was discussed toward the end of the meeting -- glad Wade was there to help bring me up to speed later in the evening.
We were supposed to go out with friends for dinner, but was relieved to find a message on the machine that they had canceled. One day was wonderful at the campground, just not enough! lol
Today we had made arrangements to meet with a friend for breakfast, the conversation lingered well past noon. A very pleasant morning indeed. Did a bit of shopping in the afternoon, then after checking in with my friends at chat picked some tomatoes and zucchini in the garden and did some watering and weeding. My list of things that I should be doing is getting longer . . . oh well! They will just have to wait.
July 24 . 2001
My mood is rather somber today, but for the most part back in control. I have another abscessed tooth -- not very comfortable, but have medication for it.
Jake has spent most of the day in the pool, Wade is preparing the RV for our trip tomorrow.
I have yet another surprise from my brother in Montana. He secretly put a box onboard the RV for me. Wade knew about it, but had forgotten. When he brought it out he said I would know what was in it. Well, rather than opening right away I have let it sit for a week trying VERY hard to figure out what was inside -- I never did, so finally opened it. Inside was an antique gumball machine with a blinking light on top. I do remember the gumball machine from our last visit, but don't recall the story behind it so will have to call Al and have him refresh my memory. It really is a treasure! How very thoughtful of him! Thanx big brother -- nice being the spoiled little sister! LOL
We will be leaving in the morning for a campground about 3 hours from here, and will be back on Friday in time to make my 1 PM meeting for a brainstorming session for the support info will be handing out to people with dementia at the Memory Walk. The Orange County Alz. Assn. has agreed to provide us with a table or booth. Penny seems to have this well in hand with lots of great ideas! So I'm looking forward to some down time, to regroup and recoup.
July 23 . 2001
Very quiet day. Jake & Wade are giving me the space and quiet I need to repair, only about 4 hours sleep last night, I am always amazed when the floodgates open at my inability to control my tears, I'm inconsolable, and Wade has learned it just will need to run its course.
I'm not sure why I cannot be honest with those around me, with the exception of Wade, till I get to the point where I have pushed myself into depression, and feelings of failure, and guilt for the destruction this disease has wrought on Wade. I entertain feelings of leaving, living by myself to release him from the bondage of my care. My heart knows he loves me, but surely he stays only out of obligation, sense of duty and worry over what others will think if he does leave me -- this is all so unfair to a man of 55 with a lot of living yet to do. These are the demonistic thoughts that rage through me - I'm tortured with guilt, and yet I'm helpless to change what has happened to me, and when I am so overwhelmed -- tired, stressed -- as I am now, to not feel totally worthless in this relationship. These are not new demons -- they have come to haunt me before, and each time Wade patiently tries to make me see what is his reality, and how mine has become distorted. The tears are uncontrollable, when finally released -- why do I find it so necessary to push myself to these extremes, when I know the consequences? I think it is time to admit, that I can no longer be, do or accomplish so much and must maybe be honest with those around me and let them know that I'm at my limit -- that will be hard, but this past evening is one I don't want to revisit again. I think even with friends in chat I have said nothing till this evening, and that too is a mistake on my part, for if anyone does understand it is them. Their support and understanding really has helped -- too bad I didn't seek it earlier.
July 22 . 2001
Off to an anxious start this morning. I've become rather fanatical about being on time, though aware of it I try and not be so. Got off to a late start on our trip up to meet Morris, Wade who was driving down to meet us from his visit with his cousin was there before we'd even gotten to the freeway for the hour & a half ride. All worked out fine though, and we all enjoyed a great meal together at a lovely seaside restaurant. Jake was even given a bit of a reprieve as we continued our visit outside and was able to play on the beach for a while. Joe and Penny stayed at the house after our return home to 'meet' the DASN members by watching the video Wade had made in Montana. Then a bite of pizza. Too much driving today, too many ideas and more responsibilities for the Memory Walk. I feel like I'm imploding! How I've been able to maintain to day I have no idea - time for me to sit and vegetate! lol
July 21 . 2001
Awoke early and unsettled. Wade was gone to visit his cousin so I let the pups spend the night with me last night in the bed -- I didn't get to bed till after 1, and still had trouble sleeping. I've had a nasty headache that I can't get rid of, I know it is just stress, and have felt on the verge of tears all day, I'll be glad when this feeling is gone. It is hard to not let Tina see how upset I am, Jake just goes along with the program -- he's very easy.
Tina brought Jake to spend the week, chicken pox and all! The official count was 75! LOL Of course he promptly hopped into the pool upon their arrival. I had bought the kids a new inflatable boat that is powered by the water hose -- we were all very disappointed when we couldn't get the connections to stay together -- I think Wade might be able to solve that problem when he gets home with the stuff he uses on the sprinkler system -- sure hope so!
The evening was filled with -- what else UNO! Seems to be my grandchildren's favorite card game.
Did get to visit with friends in DASN chat this evening while Jake played computer games on Wade's computer.
Looking forward to lunch with Morris, Penny & Joe tomorrow -- hope I'm over whatever it is that has hold of my emotional overload !
July 20 . 2001
You know me . . . love to share good news!! - This was in my mail box today - I hope he doesn't mind my sharing -- I am very honored!
Alzheimer's Daily News of Ageless Design informs me that chapters of Alzheimer's Association in USA support your attendance at the ADI conference in New Zealand. It is wonderful. I am going to attend the conference too and I am looking forward to seeing you in Christchurch next October. I hope you and your family have happiness.
Sincerely yours,
MIYAKE yoshio MD
Vice President
Alzheimer's Association Japan
Kyoto Social Welfare Hall
Thank you very much Mark and Ellen for carrying this today in your online newsletter Ageless Design, Alzheimers Daily News Service . For those of you that don't subscribe I would highly recommend that you do for the latest in Alzheimer's news brought daily to your mailbox.
Connected with Morris, Joe & Penny will be joining us Sunday for lunch -- will be nice to all be together again - Morris & I have lots to discuss about the ADI conference and Joe & Penny not only have the conference to consider but what we hope to make available for people with dementia at the upcoming Memory Walk in Orange County.
Wade is off for Fresno to visit his cousin, he'll be back Sunday. Looks like Jake is feeling well enough to come, so Tina's bringing him in the morning.
July 19 .2001
Got my flight confirmation for NZ!
Really exciting is that three of our DASN members are going to submit abstracts for the Canadian National Alzheimer's conference in Alberta Canada! Candy, Lynn, Carole ... I know you will blow them away!
Press release was sent out today:
Alzheimer's Association Sponsors Patient Advocate
The Alzheimer's Disease International (ADI) will be holding it's annual conference in Christchurch, New Zealand on the 25-27th of October. The Alzheimer's Association of Los Angeles and Orange County (California) , are supporting and sponsoring the attendance of a local woman, Jan Phillips. Diagnosed 5 years ago at 45, Jan has become a strong advocate for early stage patient services. As a founding board member of the Dementia Advocacy and Support Network (DASN) she and fellow DASN members will be presenting a proposal to the ADI, plenary address, workshops for people with dementia (PWiD) and will also have a booth and poster presentation promoting DASN and early stage patient support and information. This is a pioneering move for both the local Alzheimer's Associations and the ADI to include, support and sponsor participation by persons with dementia in the conference.
For further information contact:
The Alzheimer's Association of Los Angeles
Alzheimer's Association of Orange County
2001 Alzheimer's Disease International Conference
You can contact Jan directly at cwadephill@aol.com or visit her web site Jan/Mina's Home Page
Again my sincere thanks Peter and Linda!!!!
July 18 . 2001
Got a note from Morris that he will be from Montana and in our area this weekend, so we are going to connect for lunch! Spent the better part of the day at the dentist -- something I truly am terrified of -- so this afternoon and evening the extreme pressure of having to behave in an acceptable adult fashion while there for the two hours has caught up with me -- rather zombi-like and feeling like I'm going to burst into tears -- I hate this feeling! Sounds like the work to come will be none to pleasant either, although the dentist was very nice, careful - I just can't help this fear that overtakes me. I am better though these last few years -- used to be I'd have tears streaming down my face the moment I was seated in the chair. SIGH
Tina called this evening, sounds like Jake has the chicken pox, and won't be joining us for the week -- not a very good day.
July 17 . 2001
Wade and I picked up the check this morning -- it's really real!! LOL When we got home I had this really nice Email waiting for me from the LA Memory Walk coordinator, it part it read:
I'd like to invite you to come to our Kick-Off Luncheon on Wednesday, August 1st at 11:30am at Hollywood Park Racetrack in their Turf Club! We'd really love for you to speak to the guests as I've been told you are an amazing individual and speaker and this would be so great to share with those involved as well as those considering being involved in the Memory Walk!
Would I come??? Heck, I can't imagine being anyplace else! Especially after all those wonderful things she thinks about me - LOL No, seriously, Wade and I participated last year and are very proud to be asked to speak again this year -- it's a wonderfully exciting day for all with preparations for the Walk!
July 16 .2001
Would you believe I finally took a deep breath? LOL ! Now my head is spinning with all I am responsible for getting done! We are going to shift our PWiD chat site over to the National site so I am touching bases with the webmaster there trying to make it as easily accessible as possible for our DASN membership. I Reworked the brochure to day to reflect the changes we agreed upon in Montana. And got together the documentation and paperwork necessary to pick up the check from the Alz. Assn. tomorrow. Whew!
July 15 . 2001
What a weekend, the excitement hasn't worn off there is so very much I need to do to prepare for NZ! And then fate has a way of making things happen too! A new friend in the Northridge chapter of the Alz. Assn., Laura Rice has been busy supporting and encouraging me and also trying to find sponsorship for the trip has made contact with someone from Pfizer that will possibly make a direct contribution to DASN. So many good things occurring all at once! And then DASN received a letter of friendship and support from the Vice President of the Alz. Assn. of Japan - so it is VERY exciting. ADI is offering us a free booth to present our DASN material in addition to our poster presentation -- Thank goodness we already prepared the outline for the workshops we will be giving! (If there is anyone who would be interested is seeing the ADI proposal, please let me know and a copy will be forwarded to you)
I'm also busy gearing up for the Memory Walk, I have asked Orange County this year to provide booth space for early stage patient support information, and to possibly provide those PWiD (persons with dementia) who are participating in the Walk something to make them visible to others, such as a bandana. my family & I !! lol)
So for now, with the support and blessing of the Alz. Assn. it is full steam ahead on preparations for the ADI conference -- # 1 on my list is obtaining Valium for the 12+ hour flight! LOL Then I will need to find a dress to wear for the dinner, I haven't had a dress since my daughter was married 9 years ago! Then I'll worry about all the brochures and papers I need to ready! LOL Can you tell I'm just a wee bit excited! I just can't believe how excepting and accommodating the ADI conference committee is being toward the PWiD involvement. And without a doubt this is a precedent setting posture by the Alz. Assn.'s - truly pioneering in their forward thinking (did I forget to mention that we also have DASN membership coming from Canada and Australia)
Friday the Thirteenth!
I have to laugh at myself, I must admit I've always had a touch of triskidecaphobia (fear of the #13) and here today it has turned out to be one of my luckiest days!!! -- let me share in part the wonderful email I received:
Jan,Now! Is this exciting or what! The post is from the director of the Alzheimer's Association of Los Angeles. Talk about recognition - DASN is surely making its presence felt worldwide! My, goodness! Guess the 1st thing on my agenda Monday is contacting the airlines, and making my official conference registration!
It was a pleasure to speak with you today. The Alzheimer's Association of Los Angeles with support from the Orange Cty Chapter and others is happy to support you and your husband so that you can present and participate at the Alzheimer's Diseae International Conference in New Zealand. We are happy to send you a check for $3700 for the following:
$3200 Roundtrip flight for two to New Zealand
$ 500 Registration and first nights lodging
July 8 - 12th . 2001
Enjoyed a wonderful week with Ashton, just seems when she is here I have time for little else! I concede, she is the UNO champ!! We've mostly stayed home but did go to the zoo, and Chuck E. Cheese's. And I will miss her terribly when she goes home tomorrow.
She went with me to my first meeting with the Orange County Alz. Assn. for Patient and community services on which I now sit ! I can't begin to tell you how great this is that here locally people with dementia are being included in the process, discussions, and decisions made that directly affect us - It is very gratifying to know our voice counts!
July 7th . 2001
Did some laundry in the morning. Ashton arrived about 4, so spent the rest of the afternoon watching her swim and playing games on the computer. Will be nice to catch up on her again. She is growing so up quickly! It was her impending birth that made me finally attempt seek a diagnosis - I was unsure of just what Alzheimer's really was, and didn't want to put my first grandchild in harm's way. I probably would have been able to hide my symptoms for quite a bit more from those around me -- but sometimes God just makes your decisions very clear.
July 6th . 2001
The weather continues to be icky, today very hot and humid! Ashton comes tomorrow for a week's stay, we are looking forward to that.
Have a bit of a concern with NZ, apparently the Alz. Assn. is having trouble securing funding for my sponsorship, so I may not be going afterall. I am hoping Alice maybe will be able to take over my workshop as she just found out that she will be attending. -
July 5th . 2001
YUCK! What a gloomy day . . . Rain in July, in California?? Just spent the entire day lazing around - probably just what we both need!
July 4th 2001
Happy 13th Birthday to my Great-niece Candice! Wow, an official teenager! Look out world here comes a gal with potential for greatness!
When we awoke this morning it was to weather very unlike California, hot, humid, the sky so heavy with moisture it dripped -- not really a rain just a few drops every once in a while.
Found another nice quote in my mailbox to share, I think it is quite apropos to our DASN logo of a turtle with wings DASN Homepage . . . . .
"Friends are angels who lift us to our feet when our wings have trouble remembering how to fly."
Ashton called to tell me she was sad we wouldn't be with her for the day, but was excited that she'd be here Friday for a whole week! That call made my day!
We went over to my cousins for a BBQ. It was nice connecting with the family again. I took along the Memory Walk brochures since many of the family participate -- strange the reaction to our '4 generation' photo in the brochure -- suddenly I have validity, some who never were interested before are greatly excited to participate -- go figure. It was a very pleasant afternoon although I left with concerns for one of my cousins who is deeply depressed, caught (she feels) in a hopeless situation of an abusive marriage, and finding solace in the bottle and with thoughts of dying as a means of escape. I do so hope our talk helped and that I can be a support for helping her find her way out of this house of mirrors. We came home before dark and watched the fireworks all around us. I can't believe the number of illegal 'big show' fireworks that folks have this year. (very easily obtained from Mexico or the Indian reservations in Nevada) Sure wish they'd ban them all in our city as they have done in surrounding communities. We were glad that they didn't seem to bother the puppies, although our cats eyes were big as saucers all night!
July 3rd . 2001
Went today to apply for my passport, just in case the trip to New Zealand and the ADI conference works out. We also went grocery shopping, and to Harley for the latest edition of the Thunder Press. Picked up another quart of the rubber roof paint for the RV, and Wade finished that up in the late afternoon. I made a dessert to take with us tomorrow to our cousins who is having the family over for 'The 4th'. Wade got a very nasty gash on his little finger, I think it needs stitches -- but, there is no way he is going to the ER, so I cleaned it up as best I could and closed it with some butterfly Band-Aids. The throbbing didn't last long, but it sure does look nasty. Weird weather for California, very muggy and the cloud cover and heat remind us of when we were in NC just before a big thunderstorm.
July 2nd . 2001
Wade painted the top of the RV with a rubber roof paint. The top was so very dirty and it wouldn't clean up, so this was the easiest solution. I worked on catching up with the weeds that had gone on a rampage while we were gone.
July 1st . 2001
Everyone hung on to the covers a bit this morning, then we all went to the airport for breakfast. I felt drained and tired all day. I was sad to see Tina, Ashton and Jake leave - I always feel so very good when they are around -- I delight in the love they share with me. They are off to the Del Mar fair today. Wade and I went by Camping World and picked up a few supplies for the RV including paint for the roof. Met a nice couple there with a very strange looking dog. The top half was a full poodle, his bottom half (short little legs) was bischon frise (sp?). Very well behaved but rather odd looking - like a strange transplant job! lol
My Journal (Jan thru June 2002)
