Journal Entries (January thru June 2000)

Spent some time with my Uncle Sam this afternoon. He has been in a nursing home for the last 14 years due to a stroke. He had just been back two days from the hospital for a colonoscopy so we went to check on him. Seems all is well in that 'end' , he is still suffering the after effects of surgery though -- very sleepy, mostly non-comunicative. Says his mind feels clear just doesn't want to talk. They are letting his physical appearance go again, so we asked that he be shaved, nails cut, etc. (Wade is very good at this, very diplomatic -- whereas I'm like a bull in a china shop) Head nurse was most apologetic and scheduled the necessary right away. We hate making waves -- we know he's a crotchety ole coot, nonetheless he is a paying guest and entitled to certain amenities. Seems this is a quarterly delimma.

We watched the new James Bond flick and The Sixth Sense... really enjoyed that one! Like my daughter said after you've watched it once, you feel the need to watch it again. I didn't pay much attention to the Bond flick as it will be rerun innumerable times in this household as Wade is a Bond fan.

May 16. 2000

Wade and I went to a memorial service for a friend of ours today. We were in the Early Memory Loss Group together. Alzheimer's has claimed another. I don't know what I was thinking -- obviously with my heart and not my head when Barb asked us to go -- she needed our support, we would be there. The most beautiful Veterans Cemetery I have ever been to, Rosecrans Memorial. high on a hill overlooking the Pacific Ocean on one side and the San Diego Harbor on the other. The Honor Guard in their tribute to one of their fellow men was exceptional -- a fine tribute paid to a very fine man. Just being part of a military service seems to restore pride in being an American.Tilly passed away in January, and this memorial was set up by his daughter to honor him.

Because it had been 4 months since his passing I thought I would be okay. Actually it was the family who did fine - I who cried throughout. The Honor Guard was so reverent it brought me back to the many other veterans family and friends that I have said good bye to ... and cried for them. The minister, his brother, spoke of this horrible disease, and I cried for me and all of my friends that struggle with this disease, and for the many others who can no longer fight but are held in its grasp. I cried for a daughter who would never have her father walk her down the isle or dance at her wedding. I cried for a son who lost a man to share his life with and I cried for my friend, who wasn't here to enjoy the beauty of the day and the love of his family and friends, and for his wife. Death has made her an ardent crusader in the political venue on our behalf. The atrocities, and indignities Tillie endured his last year at the hands of our 'system' of elder care are hard to believe, and yet make a compelling story on behalf of 'us' all. I was most offended by another of the caregiver members of our group in attendance who videotaped it all for Barb. I thought he was just filming the service, but as I looked over at him as the violinist played 'Nearer My God to Thee' (now that was exquisite in it's beauty, if not heart wrenching), I found him zooming in on the mourners present -- how intrusive and insensitive.

Wade had the presence of mind to stop at our daughter's briefly on the way home. Absolutely what I needed -- lots of hugs and kisses and 'i love you's' from Jake and Ashton.

May 14. 2000

Mother's Day! Our son's 29th birthday.

I called my Mom this morning, even after insisting that my step-dad put her on the phone he still wouldn't let her speak for herself ... very frustrating. Even when I pointedly ask the question of her, he still overrides her answer. This is why my brothers won't call her. My kids didn't call :( I figure Tina thought she had it covered with her phone call last night after the birthday party, and I guess Jeff figures his birthday overrides Mother's Day and it is I who should be calling ... we didn't even go out for our usual Sunday morning breakfast, I ended up going out for fast food about noon.

Great tribute to Saturday Night Live and a nice IM chat have given me a much needed attitude change. I was able to get a few more items on my past pages - I never really did keep a daily journal but rather tended to write about events thus the message board format is working well. No, Jen I still haven't put in my list of 'AD' words ...soon I promise! :)

May 13. 2000

Went down to Carlsbad and spent most of the day at Jake's Birthday Party. I enjoyed the day but spent most of my time on the periphery of the festivities -- the loud noises from the festivities got to be too much. I was dismayed that I couldn't carry a conversation, rather felt trapped by an old acquittance who tried to find out what we'd been up to. Question after question -- nothing heavy just made me very uncomfortable as I couldn't recall some of the events of our camping trips she'd heard about through Tina.

Best part of the day was the "I love yous", hugs and kisses from the kids - worst part was leaving them--I really do miss having them visit -- my heart feels very heavy.

May 12. 2000

Went this morning to visit my Mom for Mother's Day. Her health is wonderful, the Alz. D is doing a progressively more aggressive attack on her mind though. I shared with her pictures of her new great-granddaughter, it seemed to please her to remind me of how old I was getting, but when I reminded her that she would be 80 this month, she commented,"Oh! Really?? I don't think so" A bittersweet visit, I find it increasingly hard to visit...I don't want to be my Mom...

Spent the better part of an hour this evening wrapping birthday gifts for Jake's 4th birthday tomorrow. He is having a 'Blue's Clue's Party', so I made up two sets of clues for him --- one had a picture of an eye/a heart/and the letter U ---the other set of clues was a group of smiling faces / balloons and presents/and a cake with 4 candles. We are looking forward to a fun day.

May

Got a note today from a friend I haven't heard from in a while, so decided before I answered her note I'd go to the message board and 'lurk' a bit , and find out what had really been happening. We were on a Caregiver's message board together for some time, and just recently she has moved on to the 'After Caregiving' board as her mother has passed on. Anyway, in my visit to the board I found the following response to a post in regard to overwhelming feelings of loss that occurred when least expected, in part he wrote:

I know exactly what you mean. When it hit "out of the blue" it almost staggering in it's effects. It's like our minds & emotions almost are on two different channels. We know what happened, but, our heart doesn't seem to know & then suddenly the reality hits.....again

I know that it may sound strange, but this hit such a resounding chord with me that I asked the author if I could 'borrow' it.

This describes so well the way I feel about living with Alz.D. We try so hard to continue as best we can a normal day-to-day relationship and inevitably something will occur that will bring Alz. D to the forefront, and I can't ignore it's effect on my life. Isn't it odd that the same description works so well for those grieving the loss of a LO, and me grieving the loss of myself, bit-by-bit, day-by-day.

May 10. 2000

Had a most difficult time accessing AOL all day. I was able to get through some of my mail this morning and am most gratified that my journal entry - Letter to Christine -- was so well received.

Joe and Penny left a video tape with me of the Orange County California (local for me) Annual Alzheimer's Conference, 1994.

Diana Friel McGowin, author of "Living In The Labyrinth," was the keynote speaker at the event and Joe a member of the patient panel. It is disheartening that the concerns expressed then, six years ago, for the most part are the concerns of today -- the need for more money for research, the lack of recognition in general of the disease by the populace and the fact that AIDS gets a disproportionate amount of press, charitable support and concern. Yes, Diana, we ARE trying to stand and be counted, to make ourselves known!! :)

Basically a quiet day, Wade had me ready early to go and do some painting work. He never did get out of the office and I seemed unable to start any other project in anticipation of leaving so therefore did nothing! I'm REALLY getting good at that

Called the grandkids this evening ---I do miss them so, Jake is excited about his upcoming birthday party (4th) this Saturday, and Ashton is bursting with pride about having received a patch from her karate instructor because she has worked hard on having a good attitude.

I don't know if it because of the lethargic mood, or just the progression of Alz.D, but today when I sat down to watch the video and take notes, my writing was more than dyslexic (which I am not, but has been occurring more), letters missing -- whole thoughts left out of a sentence. I wasn't aware of this new loss as I have been using the keyboard almost exclusively to write of late, and of course with the spellchecker reread most of it before I send it off. Guess I will have to start writing more, and not allow the brain to become too complacent in that area.

May 8. 2000

A new friend asked me to share some of my feelings about the loss of choices encountered with Alz.D --I struggled quite a bit with my response to her because of the word choice -- anyway this is what I answered and submit for today's journal entry:

Subj: Alz.D(emension) Date: 5/9/00 6:08:13 AM Pacific Daylight

Dear Christine:

Alzheimer's Disease I think affects each of us very individually because of the brain cells it chooses to attack -- each victim different and yet the out come will be the same it is just the path which differs.

I think sometimes many of us try harder to do more and to be seen and recognized as we are so frightened within about having Alz.D and knowing it's consequences that we strive to be recognized, validated as alive, as rational, as productive human beings. And yet others will choose to ignore, to hide from and thereby deny its existence. Because at diagnosis we are immediately discounted -- our views are discredited because of Alz.D.

I chose to speak openly about having Alz.D for many reasons - for one, many of my peers are unable to speak anymore, another reason is that the treating drugs will have little or no effect if started later in the diseases progression, another reason is the need I feel to put a 'new face' on Alz.D -- to let people know that it is not 'Old Timer's Disease' but strikes many in their 40's & 50's and some even younger, also I want them to realize that this is not an inevitable disease, nor is it one of consequence.

Not too long ago I was invited to attend an Alz. conference, not to speak this time, just to attend. As usual there were the ever-present exhibitors, and I made my way around the room perusing and stopping at each display. Of course they all want to know your affiliation. It doesn't matter the great engaging conversation we've had, invariably when I disclose that I am the patient they become stuttering messes! They have patients services, products and homes, they have caregiver resources, support, but dang if they can figure out how to converse with a patient! After I have been identified...we may have had the most engaging wonderful exchange before ... the conversation abruptly ends. At times amusing, always disconcerting as this is a group gathered specifically for Alz. awareness and yet they themselves are at a loss......... how can I expect more of the general populace? I could choose not to identify myself, but what is the value in that? Perhaps 'they' will see that Alz. D is not just a product, not just a service, not just a means to making a dollar, but that Alz. D is real, is alive, is a human being.

At this time I also choose to be alive. This is one of the harder issues of having been diagnosed early, and of ferreting out knowledge of the disease and it's progression and being involved with peers and caregiver's who are father down the road with this disease. From the outset, as I mentioned, you are discounted and become invisible during most conversations. The guilt that is heaped upon the patient is enormous, not intentionally of course -- through no fault of our own we have Alz. D which will cause untold misery for our caregiver's. More than anything this is hammered into you as you seek eldercare attorney advice, Alz.Assoc. support and counseling we are only in existence to make them members of this society of caregivers! I did not ever hear any support or sympathy for what will be my losses in a life ended with Alz.D. Where is the dignity in a life that after diagnosis has no value, in all subsequent conversations only my caregiver's needs were given any validation through the support, counseling and respite offered. Oh, yes there is no question that those days will come, but I am not (and was not) to that level of incompetence merely because a diagnosis had been made. I do not want my husband, children and grandchildren to suffer through the end of this disease with me. And yet I am selfish enough to want to be here as long as I can, to enjoy them as long as I can. And yet I hope I can remember and know when is then. So even though you may not think living is a hard choice, for those of us that know the consequences of this disease and the devastation it reeks upon all it touches, and the guilt with which we live just being alive with the Alz. D diagnosis, for me it is a choice whose judgment I question often.

If I could chose how I as a member of the Alz. D and dementia society wish to be seen it would be enough that within the medical field and affiliated services for this 'society' that we be seen in an optimistic and not fatalistic light. That now with the extremely rapid changes that are coming about with new medicines, gene mapping of chromosome 21, cell rejuvenation therapy, etc., etc., that Alz. D be seen now as a manageable and treatable disease. Yes, I know that there is still no cure, but, there is no cure for diabetes, high blood pressure, liver dysfunction ... and yet there are courses of treatment that will control to a degree and manage the disease.

Perhaps this approach will take the stigma away from the disease, and get more people to come forward and accept and seek diagnosis at a younger age when present drugs can be affective. I myself am proof of the new generation of 1st time Aricept users ... 3 years now my testing has held basically steady, albeit slight slipping in some areas, for the most part the diseases progression has been forestalled. And perhaps if forestalled long enough, there might even come a time when there might be a halt to this monster's progression. You know better than I then rapid fire advancements we are now seeing.

Now these are perspectives of an EOAD, I find many within the field are not comfortable with the fact that I and many of my peers have not continued down a predictable course of decline -- progression into Alz. D was expected, was somewhat predictable in it's timeline to death -- That challenges the Alz. Caregiving community to revise and renew their thinking. We have come to accept the death of a person with Alz. D as matter of fact, and have prepared the road well, modern up-to-date facilities just for Alz. caregiver resources and respite -- now we need to prepare the road for living with Alz.D. Patient support and counseling -- family, marriage, legal -- crisis intervention. These are needs people 'living' with Alz.D. need to maintain their dignity as viable, productive human beings not life's discard because of a disease.

I'm going to close now and get this off to you Christine, I don't feel that this is the impute that you were looking for and yet this is what I have to offer at this time. I do look forward to further discussions with you and wish you well at your conference!

Sincerely, Jan/Mina -

Nothing the heart gives away is gone, it is kept in the heart of others . . . The Heart Remembers

Contentment is not the fulfillment of what you want, but the realization of what you already have.

May 8. 2000

Spent most of the morning helping Joe & Penny clean out and rearrange their van. Got Penny on IM for the first time and she had a nice conversation with Laura (my webmaster) in Montana. Joe is especially excited about meeting Morris, "a genius." And of course I keep extolling the virtues of Laura's hospitality having visited last fall, and the beauty of the northern states.

I'm hoping that Laura will be able to get them more involved in the CareGiver's Army as well. I think the petition is a natural, and will fit right in with Joe and Penny's trek across America to spread the word about Alz.

We were hosted for dinner by great support group friends and we all shared the path that Alz. D has set us on. Joe and Penny in the streets, me on the Internet, and Barbara beating down the doors of politicians from California to Washington. Each with a different focus, all impassioned to make a difference. They will be back on the road tomorrow.

May 7. 2000

We met Joe and Penny at our usual Sunday morning spot, the small restaurant in the local community airport. We tried to get a some of our old support group over for an afternoon BBQ, but just couldn't pull have one member come by though and we all were able to discuss there 'Quest' thusfar. They have visited 15 of the lower US states and will now traverse across the northern states making their way to the Alz. Conference in DC in July.

May 6. 2000

Wade's comment yesterday is not as mean as it might have sounded to some of you. In actuality I'd have been better off with my head in a bucket ...I got a big scratch on my forehead from a run in with the tree branch in the aviary, and a nice size lump on my head where I came up under an open window ... just not paying attention. Now that says nothing about tripping on the steps ... just one of those really foggy days! Joe and Penny called (Joe's Quest) and Wade has invited them to spend the weekend with us. We made plans to meet with them for breakfast Sunday and go from there.

May 5. 2000

Wade says I've spent the day with my head in a bucket -- probably a pretty apt description ... think I'll leave it at that.

May 5. 2000

Wade says I've spent the day with my head in a bucket -- probably a pretty apt description ... think I'll leave it at that.

May 4. 2000

I received a nice note today from the author of "Where's My Shoes" Brenda Avadian .... She is on a Midwest tour with the book. My respect and admiration grows for her as I read further into her journey with her father's Alzheimer's. She is SO through in her care for her father, I think she asked everything except where they were going to throw his toe nail clippings away before she considered placing him in a facility. Her most precious father, her hearts treasure. And when the worst case scenario occurs, she presents a confident presence amongst a somewhat confused and defensive staff. She is her father's daughter, they favor very much in their looks --- I have found Brenda to be witty, intelligent and candidly charming in her writings. I will have to e-mail her and find out if she has anything else out here to read!

But, strangely enough now that I have finished the book, her story is gone -- it's like I just have a feeling about the book, and yet I have lost the content. The comments I made specifically about the book today and yesterday were made from notes I took while reading it. But now as I finish this entry for the day it is distressing that I can only recall one incident, probably because I can relate to being lost ... and yet I can present myself so well there is nothing right now in my life that there isn't a reminder system in place for --- the hamper overflows, the bills arrive, the cat and dogs let it be known that they are hungry, the sun rises, the sun sets ... and yet I think I really need to give some thought to the loss of this book so quickly from my brain --- I hate these reminders that Alzheimer's is more than just a word .....SIGH

May 3. 2000

Gosh, these puppies are so much fun to watch! Tina did a great job of fattening them up while we were gone! I'm afraid my 'puppies' are rapidly becoming dogs! I don't see any 'mini' or 'toy' left in these two! LOL

Still reading Brenda's book."Where's My Shoes?" She is really a young woman to be shouldering this responsibility -- sounds like she has a very loving husband beside her though.

My upside down Canadian Goose has been righted!! I am so taken with him and his companions I have written to the company and asked to be a distributor.

Also today I was contacted by a friend that runs an Alzheimer's Caregiver's support group out of the local hospital and she and the group have invited me to facilitate their next meeting as she will be out of town. I'm very excited and flattered. I really do enjoy meeting face to face with groups, they have so many questions about what it's like to be living with AD from my perspective and what more they can do to help their LO's. Someone new in the group also gives them a chance to retell their story and gain validity for choices that they have made for their LO - the time always flies! It won't be till June 6th. So we'll have an update then.

Still dragging my heels at getting the RV ready for the next trip ... oh well, it isn't going anywhere!!

May 2. 2000

Well the washing machine has been busy all day, and yet I've accomplished not much more. I find it increasingly difficult to stay at one task to completion, thus I seem nothing done. Very frustrating, I know I need to organize, just can't seem to get there!

We listened to the Forrest Gump book on tape (read by the author) while we settled down for bed one evening on our trip. It is very different from the movie and yet the same ... really funny and touching.

I find that in many instances I prefer the book on tape, especially read by the author -- you really get the emotions that that the author thinks are important to the telling of their tale. One I have listened to many times is Amy Tan's "Joy Luck Club," and every time with it's familiarity I seem to hear something I missed before.

Also I started reading again Brenda Avadian's book "Where's My Shoes?" My Father's Walk Through Alzheimer's (I got the book in March at the JDF Alz. Conference from Brenda ... neat lady ... and promptly lost it! I know a 3 bedroom home isn't that large, but it does seem to swallow up many of my things -- it still hasn't coughed-up my large Garfield key ring or my cell phone both missing for over a month ... sigh...oh well) Anyway, Brenda writes a good story and an honest one. Her anger at her brother and sister is clearly painful, and her frustration as well. Here they are in the same city, her brother in the same house and yet oblivious to the needs of their father, and she is 1,800 miles away. It is interesting to note in the book that even after she has taken major steps she is still concerned at what others think in regard to Day Care. She makes smart decisions though, not on a whim. It is funny how we choose to take a stand over what others may see as trivial, but to us so important to maintain, nevertheless suffer the consequences of our stand and refuse to budge. Thus the title "Where's My Shoes?" as this was a custom in Brenda's house of wearing no shoes, while her father was staunchly set in his old ways if you were dressed you had shoes on. I'm only halfway through the book, it is a good read!

May 1. 2000

Well we are home safe and sound, our pockets a few dollars lighter, and glad to have had a good nights sleep in our own bed at home. I'll give you our "Laughlin Harley Week" in brief.

Sunday (April 23): We left the house about noon -- our usual early start , about two hours out we had a blowout on the right rear inside tire. That's when Wade discovered he'd left his phone at home -- well after about ten minutes of expletives he hoofed it down the road to the call box -- help was quick in coming and we were back on the road within the hour. I'm going to write Fleetwood the maker of our RV, makes no sense at all that they would mount the spare tire on the driver's (highway) side.

We spent the night at the AVI Casino. Lots of rigs there, many vendors, lots of scoots!

Monday: We played some in the casino. Won $70 at the nickel Monopoly game. Yee Haw! We tried to reach our son Jeff and DIL Windy but the phone wouldn't go through from the Avi reservation. So we downloaded the motorcycle and drove over to their house. Windy is ready any minute to give birth to our 4th (their second) grandchild. As Jeff says her (turkey) timer's popped!

Tuesday: Awoke to the sound of jet skis on the river. After breakfast left my $70. at the Casino :( - It is getting HOTTER! We moved to the RV park in Needles - great spot overlooking the river, not far from the pool. Dang!!! our refrigerator decided to quit (with a weeks worth of groceries) Jeff and Windy and our grandson Brandon (2 1/2) came and we went to the pool. Put the chicken in the rotisserie. Cooked two chickens, and steaks - ate as much as we could :) I had bought a 'Flying Goose' kite to fly so Wade put that up -- poor wayward bird spent most of the time flying upside down! The RV camp is adjacent to one of the highways into Laughlin so we hear an endless parade of Harley's heading into town.

Wednesday: Awoke to the cacophony of birds greeting the sunrise. There are so many bikes going by, we've gotten pretty much accustomed to their sound. We drove up to Oatman on the motorcycle, it's an old mining town -- small not even a stop sign, but there are burro's that wander the streets. Right now there are about nine resident burro's wandering the town. Met some nice folks from Sweden here on holiday -- they rented Harley's here out of Las Vegas and are enjoying the fun of all the gathering of bikers. Let me tell you today's biker's are really a different breed ... we were walking the town, and a group of really rough looking bikers came into town -- no shirts, tatoos, cigars hanging out of their mouths -- gunning their engines. Anyway, as they pulled to park in front of us one of the bigger guys announced loudly, " I see exactly what I want !" We looked in the direction which he was pointing and expected to probably see a good looking woman or a beer stand ... neither was in sight ... instead he headed over to the coffee stand and ordered a 'triple latte' -- definitely altered his 'bad boy' image !!LOL More heat than I can stand at 105 -- so we stayed in camp the rest of the day.

Thursday: Piddled around the campsite till after 5, again a very hot day, still over 100 when we left for dinner at the casino. Every parking lot is a sea of motorcycles! The expected number of bikes this year is 75,000!! Last few years have had problems-last year rain, before that butterflies & locusts -- so they are predicting a record turnout this year. We toured some of the vendors but didn't find anything wonderful that we just had to have. Lots of beautiful bikes though -- revving with that distinctive Harley sound as they drive the main drag competing for attention from the onlookers -- great fun but DANG it's HOT!!!

Friday: Found this morning in a magazine, I do like to collect quotes, this one's a keeper!

"I know God won't give me anything I can't handle. I just wish he didn't trust me so much.

--Mother Teresa

We went to the hospital at noon as the doctor admitted Windy. We stayed till 1:30, they advised us it'd be at least another 6 hours. Jeff took Brandon home for a nap and we headed up to Chloride, another mining town. Was really a nice ride as a cloud cover came in and the elevation of Chloride was higher and much cooler. Headed back to the house so I could watch Brandon, but they weren't home, so we headed back to the hospital. Lo and behold if Jeff wasn't holding his new daughter -- Madelyn Marie, 7lb 8oz born about two hours after we'd left. She's a real beauty! Lots of jet black hair! We were hoping for a little red haired girl as Windy's a red head, seems Madelyn took after her other grandfather, as we're all blondes on this side of the family. Spent the evening downtown with the rest of the biker bunch!

Saturday: Went and visited with the new granddaughter again, brought'It's a Girl' cigars for Jeff and flowers for Windy. Wade stuck his into thecorner of his mouth (he doesn't smoke) and chewed on it all evening -- fitright into the rough biker image - I think about everyone that crossed his path now knows he's got a new granddaughter. I ended up winning again at the Monopoly, and they comp you free drinks when you gamble, so after 4 double straight shots of Chivas I was a bit toasty...

Sunday: Joined the endless sea of motorcycles and cars heading homefrom the weekend. The main question of the week -- it was wonderful to see thevast array of stars in the desert sky but where was the moon?? In theseven days there I never saw the moon!

Well, you are 'up to speed' guess it's time to start the laundry andcamper clean up!!! Also, I have to check out the mailbox - 592 posts! YIKES! Be patient I will answer your letters! :)

April 22. 2000

What a nice day. Puppies got bathed this morning early and then we were off to Tina & Todd's. Tina had fixed a really wonderful dinner. We left the puppies with them for safe keeping for the week, although I did tell Tina to board them in a kennel if it became too much.

So now I am exhausted, got the RV packed and we are ready to go tomorrow to Laughlin. We will be there for the week visiting our son and his family -- (we anticipate our newest granddaughter being born while we are there), and getting set for the Harley 2000 celebration. The Harley's will start coming in on Monday for next weekends Harley Rally. Most of the vendors and displays will also be up and going Monday and throughout the week and next weekend. I understand that they are projecting 75,000 bikes this year! We will be staying at the Avi casino Sunday and Monday and then moving the RV to a RV vacation resort on the river for the remainder of the week.

So I will wish you all a Happy Easter Sunday !

And unless I can get Internet access at my son's, my journal will be down until next week.

April 21. 2000

Busy day! Baked egg shaped cakes that I will take with me tomorrow for the grkids to decorate for Easter dessert. Bought icing and lots of different sprinkles - I think we'll have fun decorating them together! Filled the car with their Easter baskets, flowers for Tina and all the puppies paraphernalia as they will be baby sitting them for the week.

Talked to my step-dad and as usual ended up discouraged and angry with him. He complained about Mom taking another woman's sweater and how embarrassed he was. I told him Alz. people don't differentiate as to whose ... she only knew she normally wore a sweater and it must be hers for there it was next to her. He says he yelled at her and it did no good ... duh? He refuses to listen in regards to her Alz., he knows she has it, and is in later stages, but refuses to learn anything to help himself -- just complains that she is so forgetful, and he has to be right there with her in the kitchen now, etc.,etc.---his life (and my mother's) could be so much easier, and better but he staunchly refuses to listen to anything I or the social worker there in their retirement community has to say. He's a hard headed German - his way or the highway, so I do have to tiptoe and watch my temper or he won't let me see or talk to Mom - very frustrating, especially when there is nothing I can do but worry . .. sigh. She is a very healthy woman and I was glad to hear that she's "getting rather sassy lately" I wish she'd get really sassy!! LOL

April 20. 2000

Wade was down most of the day with a bad sore throat and fever :( . spent the day getting Easter baskets ready for the grandkids and laundry. Also with Wade not up and about I was able to spend quite a bit of time on the computer today inputting some more of my old journal pages. Wow! It really is strange reading some of those old thoughts and fears. I must say I feel that I am coping much better these days.

And I was told I will get my 'e-mail angel' status -- that is exciting! Also found out that two of my EOAD friends Laura and Mary are also e-mail angels, they were just not listed on the Alzheimer page, but rather on the "Other Dementia" page under Memory Loss. Not to sure where the Tay will put me.

Tomorrow we pack the RV :(

April 19. 2000

Well. it sure is quiet around here without Jake! Guess it's back to the same 'ol same around here. Took it kinda easy today because I know the end of the week will be busy with last minute preparations for Laughlin. ( Hey! It sounded like a valid excuse to me! LOL)

Thanks to Jean, Laura and Morris for the words of encouragement. It does seem though that my heart is really out there on my sleeve and I am very emotional and take everything to heart of late. .. don't know if it's the medications increased effect or just me. Nonetheless as I wrote to a friend , just when one door slams shut in your face another opens (wrong paraphrase I know ) anyway I went to visit a site I hadn't been to in awhile Alzheimer's Outreach, Where Information & Education Go Hand In Hand With Caregi and found that she had added an e-mail angels page (or maybe I just missed it before) well she made it sound so great that I wrote and asked if perhaps she wouldn't consider me as a patient since all the others were caregiver's. So at least I HAVE done something This is a great site I hope you'll take a moment to visit if it isn't already bookmarked in your favorites. Maybe Barb is right, I have been in my safe rut for too long and need to explore more options if the ones I have aren't interested. And I do understand the Alz.Assoc. - truly - they are just not geared to deal with the patient, the Caregiving end is their forte.

April 18. 2000

Took Jake to the airport to meet his folks. He was excited, but when the time came to leave he decided he'd rather go home with us -- it was nice to see his Mom and dad, but, he'd rather live with us. Needless to say Tina & Todd's feelings were hurt.

The house will sure be quiet without him. I have a lot do keep me busy though, as Wade has decided to leave yet another day earlier and head out to Laughlin on Easter Sunday. So we'll have to get the dogs down to Tina's on Saturday which means I'll have to have most of the RV packed by Friday. Don't have a laptop, so unless I can get on-line at my son's I'll probably be off for the week.

April 17. 2000

Had a great 'camp out' -- storm came in rather late but when it did it came in with a terrific light show first. We had a good fire going most of the day.

Got a call from friend that really chastised me for not beating on Alz.Assoc. doors to do more speaking on behalf of patients. Her husband just passed away a couple of months ago, and she feels that it is my obligation to get out and speak for those that can't speak for themselves. I tried to explain to her that the lack of speaking engagements had nothing to do with me -- but she was relentless. So now I feel bad. I wish I knew what to do, and how to get a continuing forum for the patient. Lord knows, it's a subject I can expound on. I feel bad that she feels I am letting 'all the others' down by not being there for them and taking their part to the populace because they can't. That I have deserted them by not continuing with the support group - Just what I need more guilt. Oh, well . . . sigh Any suggestions?

April 16. 2000

Well the pitching arm is rather sore today, but Jake's fine! Today is a marathon "Candyland" and "Uno" day, as he's running a bit of a temp and this is my bid to keep him quietly amused. Got a call from the kids, sounds like they spent as much 'bottom' time on the snow as they did up on the snowboards! :) Said they were going to spend the evening in the Jacuzzi.

We are looking forward to a storm coming in late this evening, plan (as usual) to sleep in the RV - we really enjoy the sound of the rain. Jake is excited about 'camping out' - I sure do love this little guy, he is so much fun. Helps that he's always sneaking up with a hug and a kiss too! Just what I need. :)

Oh, don't miss my photo page! My webmaster, Laura has put up some of my favorite pics.

April 15. 2000

As expected spent most of the day playing baseball pitcher - Jake is a natural born athlete! Convinced him he needed more practice on his ball dribbling, so was able to get a bit of a break. :)

Finally heard from Joe and Penny (Joe's Quest) -- I was really starting to get a bit concerned. They arrived in Savannah, GA and Jacksonville, FL last week and are in Daphne, Alabama now (not far from Mobile I understand) -- sounds like things are going on schedule and they are planning to work their way up the coast now towards DC. I do so wish I could be there to greet them! Joe has really been able to make his dream come to fruition, I'm very proud to be able to call them both friends. If you'd like to send them a note of encouragement their address currently is -- Joesjourney@aol.com

April 14. 2000

Spent most of the day cleaning and catching up on laundry ( so what's new ) , Jake will be here with us for the next 5 days as Tina & Todd were given a mini-vacation by his boss to Canada. I never seem to be able to find time for anything other than the grkids when they are here - thus the need to do some extra housework, for when he leaves it will be a total disaster area.

He is on my desktop publishing computer right now playing a math blaster game, not too bad for an almost four year old. His sister has done a good job playing teacher with him. We had a great time earlier blowing bubbles -- the pups, especially the dashound DD, really enjoyed chasing them! It's nice to laugh at their silliness.

April 13. 2000

Was nice to catch up on my mail and find such good news. Morris (check out his link on my home page) submitted his paper to the National Alz.Assoc. on Rehabilatation and subsequently he has been invited to present it at the Conference in July! I am so excited! Those who know me know this has been a thorn in my side that the agenda that the Alz.Assoc. has posted did not include anything about the early stage patient - so this is a real accomplishment - and I know Morris will do a good job of representing us.

Also, Mary another friend from the internet was contacted and interviewed on 9Online Health Watch - News in Medicine in Oklahoma where this breaking news of perhaps the real possibility of a cure was released. She represented us as a younger face of Alz.D. . Thank you Mary!!

And more good news a friend struggling with not only Alz.D but also with MS is making a good comeback and recovery from a severe physical MS setback - I am truly delighted that she is almost her old self again.

Got a cute picture from Ann Karin of her at her keyboard with her dog draped over her shoulder :)) So although I am still not caught up, the news so far has been terrific!!

April 12. 2000

Well the trailer did fine behind the RV, but I'm not too sure about the two pups! What a handful. They really haven't been away from the house before, so there was a lot of scolding for inapproprriate barking. They did sleep through the night though, and took care of their 'business' outside.

I'm still in a bit of a 'blue funk', I'll have to shake it soon or my house will be condemed. When I'm down I have a tendency to avoid life in general, and instead try and work through what is bothering me. It is bad enough with the emotional conflicts that Alz.D. provides, I believe it becomes harder still when things are clouded by the anti-depressant I take. I don't want to gloss over and fade away all the obstacles, yet at the same time I know I need help managing my depression so I am not sure quite what to do sometimes. When I was off the anti-depressant thoughts of suicide were ever present, and having Alz.D and knowing what the future will bring for me and my family is certainly validation enough for a tortured soul to act - indeed making the irrational very rational. My problem seemed to be knowing 'when was then' as I have stated before. I don't want to miss what I can now enjoy without being a burden to my family, and yet when I do become a burden will my faculties at that time be aware enough to register and act.

Right now at the forefront of my agenda I seem to have a strong desire to have Alz.D. recognized as not just an old person's disease. I want somehow to help getting recognition for the patient so that we too can benefit from support groups and counseling now largely only for the caregiver. We are diagnosed and dismissed. I also want to see a time when even people in the know about Alz.D will start to be less fatalistic as there are so many good things happening, we need an optimistic approach for our future generations, or they will be hesitant to make use of the vaccines and preventative drugs on the near horizon of our future. So I am consumed to do all I can to make this better for my family, and not leave the generational passage of Alz.

April 11. 2000

Tried to catch up on my mail today - hope I didn't miss anything important - sure hit that delete key alot, and I'm still far from done. I have two message boards that come to my mailbox, and friends that always keep it filled with jokes and inspirational notes as well. Away from the house most of the day, still tending to last minute stuff for the trip at the end of the month. We are going to take the rig out this afternoon - loaded with the new trailer and Harley and take a short over-nighter to see how the trailer tows and how the pups will do overnight on the road. We've had DD out and she did just fine , I'm not too sure about handling two dogs though. I bought them a fold-up 'play yard' at the toy store they get too tangled up on a leash line - so we'll see.

April 10. 2000

I'm Back! Over a week has passed - my machine has been down, and I have missed this connection in my life very much. And my most humble thanks to Vickie and Mary for missing me too - you make my heart smile. It will probably take me the better part of this week just to catch up on my mailbox and friends journals.

It is strange trying to recall what has occured since I last wrote, it all seems somehow long ago and obscured. We did get another puppy into our lives - a black toy poodle. He was originally supposed to be my Christmas present but the person watching him 'lost' him. ( that's why Wade bought me DD) Well he's back! So now we have two dogs - at first thought we might give DD to Jake , but these two get along so well I guess we'll keep them both.

And I have suffered this last weekend a broken heart. It was inevitable, the head knows that quite clearly - it's the heart that feels bereft. Tina and her family came by Saturday. I felt like I had lost my family - the closeness is gone, our lives are no longer intertwined - their new lives apart from ours are just that. They moved about an hour and a half away about four months ago. Before that we were only about 20 minutes from each other. This is what I know is for the best, the grandkids had become too much of my life and I theirs and we needed to distance ourselves so that the distancing that will come with the Alz.D won't be so hard on them. I know this with my head, it is my heart that is feeling sad at just how quickly they have been able to move on and don't have the need to give me that hug, hold my hand or cuddle close any longer. And I am no longer 'Mom' either .... Mom in conversations with my daughter for the past two months or more now refers to Todd's mom. Silly I know, but for the past 8 years she's always been BJ or Grandma ...I've always been Tina's 'mom ' with pride and I guess feel just a bit disrespected, cast aside. It doesn't help either to know that her mil is an extremely divisive woman that will work diligently to destroy what is left of our relationship and will no doubt succeed as she has before with the rest of her family - it's just her nature ( I know I sound perhaps jealous, but this is the farthest removed. I truly have never met anyone as venemous as this, and I don't deal with hatred and negativity well. She has cast aside all her relatives -brother, and now the other son and his family whom she lived with for 3 years prior to moving in with Tina . . . her grandkids (6 & 4) there are so confused, one day Grandma - next day doesn't want to even see them) So maybe it is that that has me so hollow feeling, that it has been so easy for her to destroy for she does manipulate so well - you know what ?

I have to let go, I did not want them involved in the downslide of my Alz.D, however the parting occurs it needs to occur, and I need to let my daughter make her life her own. I don't know if the anti-depressant hardens the heart, but it she helps to ease the pain. Still the tears flow, I have always loved with all my heart, and right now it feels very broken, but I know it will mend.

March 31. 2000

I went with Jake and Ashton ( my grandchildren) and daughter Tina to the Scripps Marine Intitute in La Jolla today. Perfect southern California weather - mid 70's at the ocean aquarium. My favorite? The jelly-fish! I could watch them for hours , they are so graceful - tranquil and hypnotic.

After the museum we opted for a picnic lunch at the beach - actually we ended up feeding most of it to the squirrels and the sea gulls. Ashton headed off to the water to gather sea shells and T and I played baseball with Jake. Just as we were leaving a Navy helicopter came in close to the shore, my first thought was that they were harrassing the surfers ( not unusual, after a long day of manuvers) they hovered close to the water line and sprayed the beach with water and sand - turned out that they were looking for an emergency landing site as something had gotten stuck in their controls - excellant manuvering by the pilot landed them on the access road to the beach -with no damage to anyone. Just plenty of excitement!!

March 30. 2000

What a wonderful surprise this morning, a very special cousin called and we caught up on each others lives a bit. I look forward to a renewed closeness with her. As youngsters we were rivals for our Grandmother's attention.

Wade took me on the Harley to a medical update meeting . Future does sound promising, a least there is room to hope. The speaker was marvelous - Dr. Gerald MaGuire from UCI who updated about the latest in research. As well he fielded questions from the rather intimate audience - 60 or so - and we were able to get up to date info on the best meds for depression, agitation etc. and which of the 'old school' meds that have now been found to be adverse in treating Alz.D. Afterward a presentation was given by Linda Sheck of the Orange County Alz.Assoc. on the many benefits of the Memories In The Making art programs.

We took the scenic route home along the beach, what a lovely day for a ride. How nice to have the shifting be towards a more positive one both in the future of Alz.D and in the weather.

March 29. 2000

Relatively quiet day here - need to spend less computer time & more housework time tomorrow... My, how things pile up!!

Got this lovely quote in the mail today . .. I enjoy collecting quotes, and this one is a real gem!!

"Love has nothing to do with what you are expecting to get, only with what you are expecting to give, which is everything."

Katherine Hepburn

March 28. 2000

I went in to PRI today for the interview for the Vioxx drug study. Unfortunately I will have to wait till May to start since I need to be stable on the Wellbutrin for at least three months.

Today was one shadowed by sadness. I have lost a friend I never met. I had looked forward to seeing her this summer when we went to North Carolina and Virginia as she lived in Richmond. We were only a year apart in ages, and our children were the same ages. Last night, as I was doing one more check of my mailbox before shutting down -- my heart lit, for there was her return address -- a post from Marsha always meant a good joke was awaiting or a kind word of support and encouragement. But this time the note was from her husband, a forward to the addresses in her book -- brief and to the point, Marsha had died in an auto accident. I was thunderstruck! I immediately went to the Caregiving support boards and chat rooms looking for someone to share this new grief with. There were no posts -- no one on the boards -- it was after midnight eastern time when Ned sent out the message, even though only after nine here still late. I was dumbfounded in the sorrow I felt. This was going to be a lonely night of grieving, and probably just as well for me, as I needed the night and today to put it into perspective. We've never met . . . and yet this woman and other men and women on the caregiving boards have become an integral part of my life. There really are no adequate words to express how much the support, encouragement, and sincere care of loving hearts means to me. I went and shared that grief today, and touched base with old friends, a cyber-family if you will, very close very caring and nurturing of the spirit of life, no matter how hard the road -- the generous spirit of caring for others is awesome in its power in this circle of friends. And it matters not that we are scattered about the States, for we all meet in the same room, where we know we are always welcomed and supported as family. And more than any other board I have ever been on this really does seems like a family, butting in, talking over, making side jokes, giving out an endless supply of hugs ... and there is always room for one more if you are looking for a family that cares!

March 27. 2000

I see I missed another journal entry :( . . . Well, yesterday was Sunday and around here that is usually our day to go out to breakfast and out for short ride on the Harley . . Which is exactly what we did!

Today was rather quiet too - I was glad to have made a connection with a young woman concerned for her mom's probable diagnosis of EOAD. Her mom is only 57. I hope that I am able to help them, the beginning days are scary and important for quick decisions that must be made early in regards to end of life wishes, Power of Attorney, and financial planning, etc. Anyway I gave her some initial information, I hope that they both will be back in contact with me.

Had a nice, helpful bit of information 'pop' from the archives of my mind - what a pleasant surprise! Tina (our daughter) is wallpapering ,and I was able to tell her about making a plumb line & how important it was. I know that sounds rather a silly thing to be surprised and proud about, but seriously those are skills I thought were long gone! Last time I tried my hand at wallpapering it was a complete disaster So maybe I can't do it, but it is nice to know the knowledge of how & why is still there. The mind sure is deceptive , I guess I shouldn' t be so harsh at judging my losses on bad days, but rather wait for a good day to push it to its limits

March 25. 2000

I spent most of this day getting vests ready for the Harley Rally in Laughlin next month. Before setting out to write today's entry I checked my mailbox and was saddened by one of the posts -- actually not written to me. In part it said, "I had hoped to get some peer counseling for my husband early after his diagnosis. But the Dr. said no. Because my LO would eventually forget it." This I'm afraid continues to be the attitude of the majority of doctors in regard to the Alzheimer patient. The statement is true, we will forget, but I don't think that that should negate the need we have at the time it is sought for reassurance, comfort, understanding. For many of us are frightened and do seek solace in the knowledge of our fate as opposed to the unknown strangeness that overtakes our being ever so gradually. As well I think it shows a basic lack of respect not only for the person diagnosed but also for the caregiver, dismissing their concern and instinctual knowledge of their LO. Granted many are diagnosed in later stages of the disease, and wouldn't comprehend the diagnosis anyway. Others would just as soon dismiss it as being a part of their getting old, and yet there are others who are summarily dismissed because they are treated based on who they will be rather than who they are. Will there be a change? I hope so, as more and more doctors take an optimistic approach to this fatal disease, and more and more LO's become aware that their opinion does matter, does count earlier on in the disease process, and not just in the end when they are loathe to be in control. Trust your heart dear caregiver's -- you know us much more intimately than any doctor that sees us once every six months-give your opinion, trust your instincts they count !!!

March 24. 2000

Well I guess it is time to put my (stubborn) pride in my back pocket (yet again). I spent the better part of the day sleeping off the ill effects of taking the wrong medication last night. I have been getting lazy about setting up my meds for the week. I usually organize them in two large 7-day pill minders. But I've gotten lazy of late and have only been taking the meds I know I have to have -- Aricept in the AM and antidepressant at night. Well, last night I took the wrong antidepressant, obviously one that doesn't agree too well. I have been getting sloppier with my meds. Used to have each pill cap labeled with the dosage mat and time ( 2am/3pm) , but looking at my medicine as I was refilling the pill-minder a bit earlier I noticed that there were a few unlabeled -- not a good idea relying on my memory I'm afraid. Wade asked if I needed some help, and I admitted reluctantly that I did. But it really lifts a great burden for this really is one area -- meds -- that I need to be wiser about. Usually when I forget to take them I get ill, but who knows how many days I may have forgotten to take them if there isn't a check system in place -- glad Wade is going to oversee this. And I hope this zombie - like stupor gets gone soon!

March 23. 2000

I was lucky enough to be invited to join the Coping With Personal Memory Loss message board. We are so intertwined by this hideous monster - it just seems to be an accumulation of insults upon our lives, just when we think we have learned to work around the Alz.D and we begin to relax and perhaps believe that there might perhaps be a mis-diagnosis, something will occur to snap us back to the reality of its all consuming nature. More and more new members are finding their way, the stories are different and yet the same and on this board there will be an understanding compassion, a shared hurt, an indignant outrage that yet another has fallen victim. A young mother with 2 children still at home, not even in their teens - A prominent woman in the legal profession - A librarian - all under 60, all able to comprehend the tragic reality of the Ald.D. diagnosis that they have received - here we have a safe haven to share honestly feelings of fears, of anger, of humiliation . . . this wasn't exactly what I had in mind to write in my journal this evening but when I went to my mailbox this evening I was overwhelmed by the introductions of our new membership - so sad, so poignant, yet there was an underlying strength in each letter an "I Dare You" attitude, a positive need to grasp for hope beyond the fatalistic reality that is Alz.D. and I am slowly but surely learning that with a negative attitude there are most likely consequences but with a positive attitude there are usually rewards

March 22. 2000

Spent a wonderful day with grandson Jake. We had taken a ride out to Palm Springs in the RV and spent last night at a friends. I ended up with not only Jake in the bed with me but also the puppy. Now, I know that doesn't sound so bad -- for I do Love that little snugglebug Jake, but you have to understand our RV has twin beds so there really wasn't much room! And every time Wade would start snoring the puppy would have to turn around, and Jake would have to take up even more of the bed. It was great fun though, Jake & I spent the evening playing UNO and telling stories. On the way home we stopped in Cabazon where they have huge statues of dinosaurs - Jake had a great time climbing on their legs and tails. I know these have been here forever and yet I don't recall seeing them before, we don't come this way often - I did know about them it's just that I didn't remember them being here -- ah, well -- today it just didn't matter. It was a fun day and we were together enjoying it. - ----Wasn't too happy when I came home and found the snails had made a grand meal of my newly planted marigolds though! ( I really can't imagine why - they really do stink, even if they are pretty)

March 21. 2000

Well, today marks my 3rd anniversary of taking Aricept. As well my daily regimen presently includes: 2000IU vitamin E,2000mg C, multivitamin w/herbs, 800mg ibuprofen, antioxidant formula, melatonin (for sleep aid) and wellbutrin(an anti-depressant) I had a chance to discuss this with a friend in the medical field who sincerely felt that a lot of the benefits I am seeing today were and are because I am very lucky to have forward thinking doctors whose views are optimistic and not fatalistic. And as well there is an open dialog which allows for better symptom management and understanding as it occurs.

Some of the boards I am on seem to have people who cannot seem to get beyond the 'textbook' Alz.D. patient, and are loathe to believe that Aricept could possibly have forestalled the progression of the disease in me this long. But three years of tests, without much of a change are recorded testament to the effectiveness of the drug in my case. And I really do believe that it very important , especially for the newly diagnosed Alz.D, to align themselves with more progressive doctors, because the face of Alz.D has changed so very dramatically just within the past 5 years, and research breakthroughs are many and very hopeful. I still think that there is a long way to go though in offering newly diagnosed patients the emotional comfort and support that is needed, for there is still the lingering fact that we are 'demented' and incapable of understanding the complexities of end of life decisions. And maybe to a degree 'they' are right and yet, nonetheless decisions must be made swiftly when you are still physically fit and it is only the mind that is passing. POA's , Living Wills, Trusts, burial, memorial, donor transplants, brain donation - all disussions and decisions that follow quickly on the heels of diagnosis. ANY WAY . . . we strive "to be all that we can be!" while we still are . . . and hope somehow we can make this road a little less rocky for those that come after us by removing some of those hard-headed rocks in the road =:o

March 20. 2000

Well, the weekend managed to get by me without any entry to my journal. It really does take me a while to re-group after a big day like I had Friday at the conference. My head is busy trying to remember and sort through all the information I received. As well there were many encounters with new and old friends that I tend to stew over - did I say the right thing, did I make sense, did I make the point I wanted, or were my toes sticking out ---again =:O . Of course it is all water under the bridge, but I need to sort through my notes and make sure I keep the contacts I promised. I have no idea where the weekend went or what we did - oh well, guess it was peacefull anyway

Today I tried to spend some time catching up on my mailbox -( Thank you for the lovely letter Brenda . . . and Dean, glad you joined the CareGiver's Army - 'bout time! you've got me downright blushing! -but I do thank you, every soul needs such a wonderfully supportive friend) I am behind in my past pages entries and as well I still havn't learned to edit my own page. Ah well, all in good time Alz.D is something you have to learn to work around - hold your breath on the bad days and swim like crazy against the stream on the good

March 17. 2000

What a great day . . .not only is it St.Patrick's , it's also Friday and the John Douglas French Conference! Well those were my thoughts upon awakening -- then I realized I only had 20 minutes to get ready, the dog decided to poop behind the bed, my husbands car (parked behind mine) wouldn't start, and my gas tank registered empty as I left the house 30 minutes behind schedule . .. oh well ! Thank goodness it was an all day conference. I Almost stayed home but am so glad I decided to go. I was a scholorship guest at the Celebration of Caregiving Conference.

What a positive day, in the information shared about new advances in research - actually in all the components that I attended. Jolene Brackley who presented " Creating Moments of Joy" in essence reiterated that 'The Heart Remembers' in her approach to dealing with the Alz.D. patient, and was such a energetic presenter you could see the audience becoming more and more enthused with her approach. I also met and was honored to spend some time with the author of "Where's My Shoes", Brenda Avadian. What a charming woman, she makes everyone around her so at ease, it's like meeting an old friend. Micah Leslie the producer of the " We Can Make A Difference" CD which he made as a tribute to his mother and ..." to enhance the public's awareness of their journey, and to assist the Alzheimer's Association in their commitment to provide services ..." gifted me with a CD and a tape.

I am honored to say that a picture of my four generations (me,mom,daughter and granddaughter) was chosen to be included in the accompanying jacket with the words to the songs. The songs and words are heart wrenching and soul revealing as they try and tell the stories of both caregiver and loved one. The conference ended on a very upbeat note as the speaker encouraged us to be more, learn to work around our problems, and that our attitude is the one thing that we can control. With stong affirmations of the positive the conference was concluded. Everyone left feeling recharged I think no matter what their posistion in dealing with Alz.D. When I got home Tina & the kids were here so it really was frosting on my cake! Was really a wonderful day in spite of it's beginnings!

March 16. 2000

Morris included some of his early journal postings to our private (Coping With Personal Memory Loss) group. Concise, the magic of it is in it's brevity. I couldn't help but feel that some words were literally screaming at me -- there is a sameness in the beginnings . . . "I feel -- damaged . . . abandoned" "My life's been destroyed" "Suicide" - There is such a need for everyone going through diagnosis to have a support around them. We all handle the definitive of the diagnosis in our own way, and yet even at the onset Alz.D. works to destroy our lives. Some work diligently to push their mates and loved ones away, not wanting to burden them -- loving spouses are at a loss as to even fathom what is going on. Others sell or give all that they own and go off and do whatever it was that they have put off, for death is immanent or they may have live to the hilt on their credit cards. Some crawl into themselves, and vegetate and still others chose a quick death as opposed to the lingering fading of one's self that Alz.D. will bring. There seems to be such an emphasis on the support for the caregiver and the patient is all but ignored (for surely it will be forgotten), I would like to see the day when there is as much a support given to the patient at the inception of this disease as there is on the caregiver during the 'reign of terror' that Alz.D. will inevitably wrought, for indeed we suffer alone this 'reign of terror' when we begin the journey . . . we too need that reassuring support.

March 15. 2000

Got a wonderful surprise this evening a call from Joe and Penny. ( If you go to Laura's site she has a link there) Now in Nashville ,Tennessee there are taking a bit of a respite from "Joe's Quest", and probably will be staying there for at least three weeks. Penny said they missed having a 'home', and were enjoying home cooked meals again. Both of them sound in fine spirits, looking forward to Washington D.C. It really is such an honor knowing these two - they do what many of us only give lip service to. They are spreading the word about Alz.D. wherever they go, their vehicle and hats are emblazoned with "Joe's Quest - to Find an End To Alzheimer's". They are being interviewed by newspapers and local T.V. stations. As well they fill many of their days visiting at care facilities and visiting with Alz.D. patients. They are to be admired and supported. If you get a chance drop them a note of encouragement (Joesjourney@aol.com) everyone needs a little food for the soul especially when they are so far and long gone from 'home'. As Joe would say "Armen" !

March 14. 2000

Rather an uncomplicated day. Beautiful sunhine, mid 70's, just right for pulling weeds. And boy did they grow with all the rain we've had recently. Why is it my weeds always thrive and my flowers drown? I am having a terrible time getting motivated to do anything! My desk is piled high with papers, the Past Pages of my journal sit waiting for me to re-type them, my house becomes just a little more cluttered each day and I just can't seem to get anything accomplished - - My mind seems to be preoccupied with things I have no control over , when I should be doing something about the things which I do have control over. This attitude of malaise is one I seem to be constantly at battle with. Wade made more than one comment today about being short tempered and negative - really not my style. Is this just another step in Alz. or is the new anti-depressant perhaps causing some of these problems? Guess will have to give it a little more time and see. Perhaps I just need to get it in gear!!!

March 13. 2000

I received my quarterly newsletter from my local Alz.Assoc. today. I feel like I've been told not to let the door hit me on the way out.

- In part the new president says, " And, it is our goal that the new ways of coping with dementia are understood and practiced by everyone. When there is the slightest hint that the memory loss someone we know is experiencing is more than just a normal part of aging, each one of us should know that an early assesment is vital. It is imperative that this assessment occurs sooner than later. Intervening with the treatments available today can delay the progression of the disease into more advanced stages.

Alzheimer's can 'plateau' at the level which it was first diagnosed. That buys time for new treatments. And it keeps people at home and independant longer. It buys time for that potential cure."

Now this really has me excited, he's been able to articulate my feelings so well in regards to early diagnosis. But then it goes on . . . " It is our ongoing goal to provide the best quality support and services for those who cannot benefit from the new treatments, for those who have moved further along into the disease."

I feel like the rug has been pulled out from under me, I have worked with and for the local Alz.Assoc., for my benefit and for the benefit of others. But now because I can benefit from new treatments there is no need for them to support me as an EOAD ??? I'm confused.

I was pleased to see that they had published Jerry Ham's wonderful poem "A Tiny Little Bracelet" It is a lovely publication, one in which I have had articles published in in the past, one in which there is no room for the patient I guess any longer - caregiver, family member, financial supporter . . .

But there is a time, a time between the initial diagnosis and the need for day care when support is just as needed and in many instances may be the only hope of understanding support that the patient can find. Loss of responsibilities, of finances, of choices . . . of self - there is a need. Why are we so easily dismissed? Is it because we still have a voice, yes I guess in that sense in the later stage it is easier to be someone "To Stand By You"

March 12. 2000

We drove the Model A this morning to breakfast. Ashton decided she wanted to occupy the rumbleseat and enjoyed waving at folks we passed along the way. Met up with Ashton's Mom,Dad, brother and other Grandma BJ for breakfast at the local city airport. I thought we were going home to get the Harley for a ride, since it really has been at least five weeks since Wade's been able to ride with all the rain, but no he decided to take the Model A out and test her new tires. It sure does ride better. Puppy wasn't so sure she liked all the wind though.

I need to try and spend more time with my web site as my webmaster - Laura - is working so hard on my behalf, I need to keep up my end better. My goal for the week is to get typed in at least half of my past pages.

The World Alzheimer's Conference is this coming week in Washington, D.C. I am so very disappointed that the topic of the EOAD patient is no where to be found. I do look forward to reading the transcripts on the new research approaches though. You can check out the conference program for yourself Program and Events: Creative Care . Emphasis is on later stage patients, and caregivers. I don't know how 'they' can continue to just ignore that there is a stage in between diagnosis, and the need for the diagnosed patient to be cared for. There are horribly scary, tumultuous days that are dealt with alone - the stages of grief that are dealt with alone long before a caregiver ever enters the picture. So much is known of the later stages, I wish the emphasis would shift. For until it does I fear that the current trend will continue, that people will wait and forestall diagnosis as long as possible thus rendering todays drugs basically useless. . .SIGH

I joined a webring!!

March 11. 2000

I attended a meeting of my old Early Memory Loss Group today. It was a bitterweet day. Seeing old friends, and learning yet another of our group had passed on.The newer members that were on the Aricept were still holding fast. Yet others had gone on to NH's. The tenor of the group has changed alot. New people enter the group, others leave and thus it is ever changing. I was surprised to hear that they were not up on the latest in drug studies , etc. The core group that was there when Wade and I attended regularly kept each other abreast of the latest, this was a regular part of our meetings.

Wade did not attend, but rather dropped me off and came back for me. I had promised Joe & Penny that I would update the group on their progress of 'Joe's Quest'. Wade says he did not want to attend since none of 'our' group was left, and it just caused him great saddness. I will send the link to 'Joe's Quest' to the Alz.Assoc. lady that leads the caregiver's group and let her share the latest as it developes.

Ashton is back this evening from her stay at her friends. So we will enjoy tonight. She has already worn the puppy out! And tonight I will enjoy those extra hugs and kisses that come my way.

March 10. 2000

Spent the morning with Ashton. It was a beautiful day here, lots of sunshine. Delighted in watching Ashton blow bubbles for the puppy to chase - her laugh is so infectious. She will spend the night with a friend and be back tomorrow. I miss my grandchildren so very much, they are so loving.

March 9. 2000

Spent a great day with our granddaughter Ashton, at 6 1/2 she is still the light of my life! In what I thought I was giving as a treat to her turned out to be a real treat for me! I took her over to her old shcool for a lunchtime visit with her old friends. You'd have thought the princess was returning to her throne . . .what a loving reception from her teachers, and friends. She even commented that even the 'big kids remembered her' - It's a rather small Christian School and excitement soon turned to shyness, especially when she spotted her old boyfriend. Of course he was oblivious , not to her , but to the fact that he was 'the boyfriend' as all the little girls buzzed around, he was just glad to hang out with her - the highlight was when he reminded her that they used to chase each other all the time & off they went! What a delight. She spent the rest of the day chasing and playing with our pup D.D. .( stands for Damned Dog or Dainty Duchess depending on whether she's left me any presents in the house) usually I just call her little puppy. I do so love my grandchildren, why even Jake (4 in May), left his first message on the answering machine! He's my little cuddlebug, who has complete control of my heart! So it's been a very good day

March 8. 2000

Ran into an old acquaintance today and it reminded me just how good things are today as in comparison with the couple of years after my diagnosis. It has been a struggle but my husband and I now are able to enjoy life again without the extreme fear the unknown of Alz.D. brought into our lives -- we each struggled and fought back and denied in our own ways. Our children are grown and secure in their own lives, and I have the most wonderful grandchildren. The surety and security their love provides gives me the power to meet the challenges of another day.

March 7. 2000

Not a bad day! Got a lot accomplished today, laundry and vests for the Harley Rally in Laughlin. But since my birthday something has been nagging at me, at first I couldn't put my finger on it but as the days have progressed (10 now) and I have been able to go back over events of the day somewhat - well not really events just fragments here and there. But it finally dawned on me what my problem was. Now I know it sounds silly, insignifigant - but, nonetheless too me it was a moment of embarrassing confusion - that has bothered me now for over a week. What had occurred was that my birthday cake was placed on the bar of the gazebo, lit with candles and I stood with most of the group on the outside of the gazebo while they sang "Happy Birthday" as I went to turn and blow out the candles another member of the group bent down and blew out the candles. It took me aback for as it was a time of confusion and overload for my brain anyway - I was embarrassed it was his birthday!

So I should not be here?

Then someone said - "Wait you have to do it all over, I didn't have my camera ready." - So the candles were relit - and this gentleman leans over and says , " okay, after this time we'll kiss- okay?" Now I was really befuddled. Then the grandkids jumped in & the candles were put on their cakes & I sang to them - this I know how to do, this is normal - but I tried to get away as soon as possible after that -- such confusion. Had I embarassed myself once again?? So today I was finally able to articulate it to Wade, and even called upon my cousin to ask if we should have been celebrating this other persons birthday too. It is strange how something out of the norm (at least in my mind) of expectation can cause such bewilderment. But, now it is put to rest.

This is not the first time I have stewed over something for a long period of time, this probably will not be the last. What is hard is when you can't find the reason behind your agitation, be it at an event or at someone - I find in those instances it is hard to get over, and my actions and words seem unsettled till 'it' is forgotten or let go of.

Another night in the RV - looking forward to a restful night in the rainfall!

March 6. 2000

Up late this evening on the computer in a chat room with Candid Virtual Carers.One on the comments made about their LO's hiding symptoms of Alz.D. from them. I commented on with a rather glib reply that "we were good at that". But 'listening' to a bit more of the discussion and coupled with Morris' earlier "GRIPE" on the ALZ board :"When you complain about forgetting what day it is or that you can't find words, people say, "I do that all the time" If you were diagnosed with malignant melanoma would you hear people say, " Myself, I've got a lot of freckles" ? It's not fair. Sure left me thinking.

In the early days of Alz. when I was the only one aware that there was something amiss, I was able to hide it from my family and friends quite easily. Unfortunately I could not dismiss it from myself. I still do my best to hide it from the outside world, even when I am speaking about EOAD. I work very hard to present a rational, normal appearance so that my words will be listened to, so that I will not appear "demented", for it is very important to me personally to let people see that Alzheimer's is not necessarily Old Timer's And it's a matter of pride as well, I'll shine my light on the things that I can do well, and try to lure you away from what I can't do with my best song & dance! Ha Ha . . .like a magician I have become good with smoke screens, & slight of hand. But it is just as frustrating to let someone know you have Alz.D. , to try and help them understand your uncertainty about something like the day of the week, or being unable to explain yourself completely because you can't find the right word, and then have this information dismissed so easily "Oh, me too". For many times we do NOT wish to divulge this, our song & dance routine of normalcy has failed us, and so we find ourselves putting our pride in our back pocket, and share our problem - only to have it dismissed as having no signifigance. And then . . . what ? If it really is a situation where I need help ( got parsley on the shopping list . . . what the heck is it??? ... where the heck is it? ) do I let it go, do I try and laugh it off with the other person, or do I try and rephrase my delimmema of the moment another way? Perhaps I've made them uncomfortable with my relavation of Alz.D. for some do back away as if confronted by leprosy, just as often as those that brush it aside. Maybe I can shave my head, have the doc take a magic marker and X out the areas where the Alz.D has already consumed my gray matter so there will be a visual!!? Well it's an idea anyway

March 4/5. 2000

Still nothing on my uncle that I can understand. The nurses on the weekend shift have trouble speaking English so I'll have to wait till tomorrow to understand what's what. He does look better today & was glad we were there to cut his cake for him. I did understand that he doesn't have pneumonia & that they had started him on medication, but I don't know what for. VERY frustrating.

Kinda' melancholy this weekend, maybe it's the rain? It is the Reagan's 48th anniversary and it is so sad to know that it was only 6 years ago that he released the information about his Alz.D. and to see how quickly it has consumed him. It makes me think about my friends in an Early Memory Loss Support Group - I think that there are only three of us left - the rest went in the classic 5 to 6 year span from a slowed down normalcy to a care facility, and for some death.

One of my friends is off on a quest - http://www.caregiversarmy.org/joesquest.html CAREGIVERS'ARMY�-Joe's QUEST this is a passion for him, and one that he knows he has a limited time to complete. Wade and I saw him and Penny off from California mid-February. They are now in Memphis, TN. I am so very proud to know them both, their journey is indeed a perilous one. I feel frustrated that I am not able to do more, or maybe the frustration comes from not knowing exactly what to do to help promote the awareness of Alz.D., which in turn will generate more research dollars. I do not want my children and their children to inherit this horrendous family legacy - there must be an end ....right now my hope for them lies with the vaccine research. Maybe I'll make that connection I need at the upcoming conference ...

March 4. 2000

Well, had to get on the ball this morning and clean off my desk as Wade has been after me. :) I'm afraid I didn't get very far before I ran across a print out of a journal of sorts that I kept earlier in Alz' progression. I decided to add it to this web site so that it wouldn't be lost again. So spent time this morning typing in old entries - It is strange to 'see' it from now, no doubt I was one angry person!

We went yesterday to visit my favorite uncle in the NH - it was his 89th birthday and we brought cake & ice cream and of course lots of candy bars! I had set things down in his room after a quick 'hello' to get some plates from the kitchen, and when I returned Wade said "let's go, Uncle Sam doesn't feel well & prefers that we leave" Well this is not my uncle! Obviously something is very wrong. I called the NH today to find out if he had had another stroke or perhaps had a UTI which might explain his behavior. Well the nurse said to me that no, he was absolutely fine - hadn't complained since December. I said I was talking about the man in the bed , not the chart in her hand! He's been there for 14 years and this is not nor ever has been a typical demeanor for my uncle. She had me hold on while she looked in on him - well no, I was right there might be reason for concern and she was going to immediately call the doctor. Blood tests were ordered, chest x-ray, and and evaluation by the rehab. & vocational dept. ( now doesn't that make sense - he's been totally bed ridden for 4 years) - So I'll wait for the test results tomorrow.

Calling it an early evening had a terrific thunder & lightning show with dinner, so we are off to the RV to listen to a Robert Ludlum novel and enjoy the sound of the rain on the roof !

March 3. 2000

Recieved a post today from Morris http://members.aol.com/MorrisFF/index.html Morris Friedell's Home Page.... ) as usual his words were very though provoking.

In part he wrote: "Fatigue quickly becomes a symptom in AD" ...... "that fatigue in dementia results from compensatorily using more of the brain, thus not allowing normal respite" The difference between Morris and I ( you know that Venus /Mars thing ) is that I just do it , compensate that is , and really have never given it the deep analysis that he has. But I do relate to what he is saying...an example: Simple day to day matters never given a second thought before now become a chore to manipulate. . . when I now arrive at a destination ( the grocery store as an example) when I get out of the car I walk to the rear and look straight down the isle to see what is there. Usually a word or a picture on the facade of the building. I make a mental note of that, or sometimes if I feel the need jot it down on my list before I proceed. I always leave from the same door that I entered if possible , otherwise I become unsure of where I am and become apprehensive and disoriented.

These are patterns that I have had to establish and fine tune because of Alz.D. - So gone are the days of zooming into a parking lot, rushing in to do my shopping ( no list ) and heading back to the car with nary a thought other than getting home to start dinner. It IS exhausting to circumvent these dang tangles - but if there is a way around it I am sure going to try! My only alternative is to give up the activity, and sometimes I am yet able to get around that.

I used to consume books, now I find I am unable to follow the story line from day to day ( some days from sentence to sentence) so now I hear books on tape - granted some times I have to listen over & over to the same tape before I can follow along on a Ludlum novel for example, and yet an Amy Tan will lull me into wonderful dreams where I seem to fall into the tale. So compensation isn't all bad . It is good that I have people in my life that make me step back and take a look, it is easy to be lulled into the nothingness that Alz.D lures you to.

March 1, 2000

Woke up excited at the prospect of being part of a marketing research study on Alz.D. Too excited I guess :( - I forgot to take my morning meds , an hour away from home that familiar pounding started in my head and of course the dry heaves weren't far behind - So very frustrating, 5 years plus now that I have taken meds every morning and every evening - this isn't a new routine! (And this is one instance of forgetting that I pay dearly for - the headache becomes almost to a migraine level until I get home and get the meds back into my system.) . . . SIGH

Anyway the study was one on one as opposed to a focus group. I would guess by the tenor of the questions the study was probably hired by Aricep ( Pfizer/Esai) - Having been in marketing research I have to admit I was very disappointed in the quality of the staff - what could have been a quality study ( many good questions covered about early symptoms, meds, areas of information) was mediocre at best. They just wanted it done. Didn't matter if the wrong thing was checked - oh , well kinda attitude. Obviously they weren't getting accurate data for their client - just data that was sorta right. It really is a shame, for it is studies such as these that many folks in the medical profession use as indicators, guide posts for what we want and need, what we have and use or don't use. When the input that is given in a candid honest mannor is not recorded correctly it just becomes - garbage in, garbage out - and of no use to anyone.

Finally got back to the computer late this evening - I will have to remember to thank Laura again for the gift of this web site - It's was like an armfull of 'warm fuzzies' waiting for me in my mailbox. So many dear friends that I have shared with, been consoled and hugged by - caregiver's that made room for one more to care for, that accepted me into their support boards, somehow ( Bobbie ? ) found there way to my web site. I have missed being with them. The board is so very supportive, that it is not at all unusual to find more than 100 posts in a day. When I was initially on the board I was able to participate, but as time wears on so many posts became too confusing and I am unable to follow a thread, and I do have a need to give back as well as recieve. So now when I get a private post I am glad to answer, I try and peek in on occasion, and I still have good friends that will forward a post if there is someone that is ill or has a seen their LO pass on and I am able to still keep in touch that way. ( They also manage to keep my mailbox FILLED with forwarded jokes ) This is a hard journey for us all - it becomes so much easier when shared!

Thank you all for filling my soul with reasons to smile and be content and happy. The heart remembers and thus has reason and ability to carry on.

'G night all! God Bless

February 29, 2000

A couple of things occurred that had set me to thinking today as painted. - It is a good activity for me, it can't be rushed - one must take their time, and there is a focus to it. In general I have an extremely hard time organizing my thoughts these days, and I tend to be scattered and have multitasks going and find that none of them are being completed to satisfaction.

What I was mulling over is the fact that I am now more of a reactionary to life. If you pose a question I can answer, if you share and idea I can comment, if you pose a perceived threat I will respond and protect my position. I've gotten better at posing those open-ended questions, you know the ones that allow another person to respond at length about themselves or their interests, so that I can appear interested and interesting. But to say that I still can be spontaneous in sharing isn't so - I find I need a cue. I also find I become absolutely incensed when I am treated in a condescending manner - perhaps perceived so only by myself . . . thank goodness I have Wade (my hubby), and friends on the Internet that I can 'vent' to, that give me that space to get it out of my system, a sounding board - I am a person that really needs that. I need someone to share with, to sort things through with

- I look for that other input that perceives things from a different angle, and causes me to rethink my position.

February 28,2000

Ah ! Back to the realities of the day to day being. I am much more myself this evening. I have tried to e-mail my thanks to folks who have visited and signed my guestbook. It really is an honor I feel that someone would take the time to do that and acknowledge my humble beginnings. There are more to do, but I will have to try and catch up tomorrow. Most of the day was spent painting a vacant apartment - I LOVE to paint , and can get lost in the doing. It was just what I needed today - something productive that required little or no thought. We finish tomorrow. Wednesday I am scheduled to participate in a ' Focus Study ' at a marketing research company on early indication of Dementia/ Alz.D / normal Memory impairment - sounds like fun! I should have alot to say on Wednesday!!! But for now will close. G'night all - God Bless

February 27, 2000

Whew! What a day we had yesterday! It has taken me most of the day today to recover, it is exhausting to maintain in social situations now no matter how glorious!

A friend sent me a list entitled 'I Want to Be a Kid Again' (if you'd like the full copy let me know & I will forward it to you)and I replied in part : "It is strange just reading the words "double-dog-dare" and "oly-oly-oxen" ,conjures up warm feelings if not exact memories ( the heart remembers ) - does my soul good , and I shall re-read them and try to clear the cobwebs of my mind to feel the fullness in my heart"

That is rather the way my day was yesterday. As family and friends arrived it was like parties we had hosted for the 4th of July for so many years - echoes of happy times - family , good friends enjoying each other. I watched rather disconnected at times, remembering smiles, happy sounds, distinctive laughter coming from the telling of a ribald joke, warm greetings of affection, hugs . It brought the feelings of old to the surface, almost surreal in perception of the day - a dejavu as the day progressed. My daughter commandering the kitchen, my husband enjoying the normalcy, socializing again. My mother in the grip of Alz.D. not knowing me - siding up hugging and wishing "her baby" (my daughter) a happy birthday.

Some times I find it difficult to talk with my family - (as much as I feel a need to share this disease with them as it does seem to be familial) and I think after yesterday I finally understand why. When I try and explain the signifigance of 5 years in my life they are quick to defend me, "Those darn doctors - how could they tell you something like that! How do they know how long you have to live" " Why don't you sue them" and like comments -and are not really ready to hear . But for those of us traveling this path we know that 5 years ago there were no drugs available for Alz.D. , it really was a death sentence, and the time frame that they gave was correct . And indeed time was of the esscense to get ones affairs in order - there was no reprieve from Alz.D. But now with Aricept , those among us who were lucky enough to be placed on the drug early into the progression of Alz.D. are expieriencing a forestalling of the disease not even the drug company had anticipated in its first generation of users of the drug. And so it is with a new understanding and appreciation I find myself with others that I share this bond with on the message boards and chat rooms across the web.

It will take a while for all the love to sink in - I find myself today looking at the scattering of messes here and there and smiling. Grandchildren's fingerpints on the windows, a ball & bat on the porch sitting in a chair with my named engraved on it, glorious flowers! in pots, on hats on wrapping paper, framed memories of the Memory Walk shared with my cousins, gifts hand made and chosen especially for me - words from the heart - the reinforcement of love and caring I needed to hear for the aloneness of this disease, the dark forboding side that overtakes one at times unexpectedly and these affirmations of love are the life preserver I cling to. ...... I will call it a night. God Bless!

Feb. 26, 2000

I am making my first journal entry on a very special day for me. It isn't because I am being feted by family and friends on the occasion today of my 50th birthday, although without a doubt becoming a half century old in the millennium is exciting, it isn't the reaffirmation of love I feel from them . . . What really makes this day special is that I am here - I am aware - I am able to write this, I am not in a Board & Care Home, or placed in Assisted Care or (quite frankly) dead.

Five years ago when I sought diagnosis for Early Onset Alzheimer's Disease ( EOAD) we were told that I could expect to be at the point of institutionalization in five years and probably my demise would occur within the next two to four years after that. So you can see my delighting in the five years passing more than the 50th occurring. With the help of God, the use of Aricept and a multitude of support vitamins, the progression of Alz. D. has been forestalled. At my reevaluation in early November of 1999, the results showed rather minute decline - test scores have remained basically unchanged for three years.

My goal is to journal on a daily basis, and as well edit into these pages a journal I kept in the early years of my diagnosis and as well musings & writings that have occurred in-between. I hope by reading my pages that others may find empowerment of their own, to continue to battle against this hideous monster, and to know that I will always be here to lend an ear when you need one.

My Journal (July thru December 2000)

To My Journal (January thru June 2000)