To My Journal (June – December 1996)

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This was started in the early years of Alz. ( about a year after my initial diagnosis) I want to include it here so that I too may re-view it - my perceptions have changed, my husband has changed, my anger has somewhat subsided. I left a big gap between this first attempt at journaling and the web site that Laura has created for me that I hope to partially fill in before it is all lost. It will take me a while to get it all transferred here so please be patient if it is something you find of interest!

HELP ME PLEASE !

My Toes Are Falling Off! And They Are Fitting My Husband For Crutches!

( The Thoughts,Feelings and Frustrations of being an AD Patient)


July 19th, 1996:

Wade is off to Mexico for the weekend to relax and unwind - to recharge- and I have decided to start writing this mini - journal... ( so that this doesn't seem totally disjointed I need to interject here that in editing this for others I have deleted what was rather a harsh tirade directed at my husband Wade, it isn't really necessary to the understanding of my story - this was just a very angry time for me, in more than one instance Wade was - and continues to be -in the direct firing line of my extreme frustrations) II hope that this will be the one place that I can be totally honest, for there certainly else is no place else that I afforded that extreme luxury. I have no wish to make anyone feel guilty, sorry or regretful in the mannor in which they interact with me and my life. I know with a dregree of certainty that this journal will be discovered, computers are an extremely important part of my husband's and son's lives,but,for the time I spend here with my thoughts and ramblings I must somehow deny that abd treat this as a 'priest' of sorts that I can come to and confess, express and be totally open and honest wit, knowing that what is here is between us only, that I have no need to pull punches for fear of hurting someone . . . we are all coping the best we can, I understand that, but no less my frustration, hurt, anger and the need to be able to express myself before implosion. A lot of my feelings are of course directed at my Wade, being he is who I spend 90% of my time with, I guess 90% of my gripes will lie with him, so very unfair - and yet on the other hand I expect 90% of my best times to be with him also. So I state here for anyone that may at some time read this, please do not be offended, for even though demented I have many needs too - there seems to be a great many programs, support groups, books, etc.,etc.,etc., (as Yul Brenner would say) that are all designed with only the caregiver, family members, and friends of the AD patient considered . . . once diagnosed I guess we are just considered demented and not worthy of any attention or care other than pity and lip service, as we wait for our final lapse into dementia, after all we are now truly demented . . .we won't remember anything in a few years or months anyway, so why waste any time doing anything but tolerating, adjusting and excusing our behavior while you now talk amongst yourselves like we don't exist in your world any longer.

I need to get away too, being left alone at home is not my idea of a good time. I've tried to go places by myself, but I want (translation - need) to have someone to share with me. I've started going more with my best friend, our daughter Tina and taking our granddaughter Ashton for the night, and or weekends when he's gone, but that is not the answer, as much as I enjoy our special time together it is just not the same. As well, it's an unfair burden to put on them, to have to entertain, watch and worry over me when my Wade is gone -they have their own lives, and a family of their own that needs building and growing together. Speaking of . . . I'm off to visit them for a while and maybe go over to Disneyland and see the parade, Wade bought me a year round pass to go whenever I can, as much as I love Disneyland it's sooooo lonely alone.

Well there you have it, day one of "what the hell do I need a shrink for when I can share this with .............., well, I don't know, perhaps I'll find a clever name for my keyboard.


Aug. 15,1996:

Another one of those strange happenings that I can't ignore. I was talking with our neighbor this evening about a problem in the neighborhood and ended by telling him that after he wrote down the information he needed to get it 'notified' to make it acceptable to the court - naturally with a strange look on his face he asked if I didn't mean 'notarized' - of course that is exactly what I meant, but when I said 'notified' I was very sure of what I said . . .I've always been very sure of my vocabulary, I knew I was at times (okay, allot of times) having trouble finding the right word lately to speak my mind, but until now I was truly unaware of substituting words with such certain authority (yikes!).

Wade went by Artesia Gardens today and spent some time with Colleen and tried to explain to her why he wasn't interested in her support group where the emphasis seemed to on 'crying and getting it out' - it is not the way he chooses to deal with "MY" problem, "It's just easier to be in denial and wait until you get that bad." Apparently with every question he answered in regard to my condition they go way over the edge for where I am ("She's still driving? -You MUST take away her keys." "She's not sleeping at night and wandering around? You must make things more secure, and keep a better eye on her!" - and CRAP like that) Really, really scary statement that she made to Wade was that it could take 10 minutes or 10 years for the disease to develope. ( I always thought it was 2 to 10 years, and maybe a steady decline - but not 10 minutes instantaneous!

YIKES! Anyway Colleen was nice enough to lend him a book to read to help him better understand where I'm at, it was written by another early AD patient. I, of course. am the one reading it, Wade is just not and never has been too interested in reading. I'm finding it interesting as I can identify with most of what he has to say, especially his feelings, if not the same symptoms - maybe like he says I really do not have Ad it is menopause or some chemical imbalance and I'll snap out of it! (wouldn't that be loverly!!!) The author has expounded on many of the same fears I have, as to when do you finally pull the plug on yourself (especially after that statement by Colleen - I'm afraid that will haunt me for awhile before I can wish it away) unfortunately I have seen the devastation that AD can wreak . . .so anyway I'm reading this book as he continues to deteriorate and I wonder how you know to say "WHEN" ifyou don't even know "who, how or what" anymore ??????????!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I'm having more trouble with bad dreams again - the midnight madness! It always takes me an hour or two to shake off the effects and bring me back to reality. My heart races, my emotions are totally out of control, and the language that I would choose to use if confronted at the time of awakening is truly out of character for me. ..............scares the hell out of me! Wade always tries to calm me down, and discuss it but after the episode we had around the time his mother was coming I won't make that mistake again - I guess when he woke me then I answered his questions about my dream honestly - didn't have the presence of mind to cloak the truth or be guarded about my answers and it just freaked him out - I don't remember the particulars now, just the consequences of my words and actions. Had another doozy last night, I guess I should have come in here and written it out, next time ....anyway, I was so mad at Wade, if I'd of had away, I'd have been out of here . . . the filth that my mind was talking was not good, but it is gone now so maybe if I can remember to come in here and write it down it will help me to understand it better? At the time I only tried to bring my rage under control, and didn't really analyze what the dream was about. I told him about it this afternoon when he pressured me to, and he can't understand why I am so mad at him in my dreams, right now neither can I. The man has the patience of Job, I don't know how he can stand being with me for any length of time.

I aso told him about a couple of missed doses of my medication. I have no idea what got into me, my reaction to finding I'd missed taking the medication was so childish. Both were morning doses , I discovered I had not taken them when I went to take my evening dose - at the time I felt compelled to hide it, the first time I threw them in the trash can, and quickly fished them out least Wade find them, and put them down the trashmasher. The second time, if I recall about two days later, they went right down the sink. I realize now how silly that was , that the medication helps no one but me, but at the time I feared . . . what?? - I still don't know, but I do remember the feeling of panic, that someone was going to find out, especially when I was dumb enough to put them in the trash can and I HAD to fish them out before I could be caught! I remember thinking that if I just put them back in the bottle, the Weasel would find out, and one run in with that guy was enough - I'll play his game, he's in charge of what may be my only hope of sustaining my sanity at this time, even if he is the biggest schmuck I've run across in a long time. I also cut down on my dose of paxil to try and save some money - this stuff's expensive, but I think that that may be what is causing the nightmares to return, I'm going to try bumping it back up to 30mg maybe every other day, we'll see if that helps. It sure keeps my moods in check, I get really upset,sad,jealous or scared at times but the feelings don't seem to linger as they did before - that really concerns me . . . I had said to Wade the other day that I thought I was really okay, and didn't he think maybe the same? Well, he pointed out to me that he had taken away (wrong phrase) most of what I was responsible for - and I hadn't even noticed till he pointed it out, now that's scary - is the medication or is it my mind? only the good Lord knows for sure. Hey, maybe that's it, I've become so opinionated that HE needs to tone me down a bit before He can let me hang out with Him.


Aug.16,1996:

What was written yesterday was actually written about 1:30 this morning. I finished the book from Colleen this morning, and Wade is out of the office so I thought I'd go back and see if anything I'd written made any sense. It has taken me about a half and hour to correct spelling and grammatical errors. I've always been such a stickler for that in myself. Not having much of an education it has always helped me to present myself in a much better light throughout my life. I really can ramble !! I need to sit down and do this more regularly so it isn't so jumbled - I've written it and yet I confuse myself. I find myself with this urge to erase most of what I have written down, but if I do I won't have a gauge for myself later.

Wade came home and took me to the bank to have the POA notarized and out to lunch. I was so nervous signing I forgot how to spell my name, I got lucky she had it printed out below the line, but I still had a bit of trouble. I don't think they noticed though. We talked at lunch a bit about what Colleen had said about the 10 minutes or 10 years. I told Wade I was going to call the Alzheimer's Association when we got home because it had scared me so. If it is true, then I can never be alone again with my grandchildren, Ten minutes is no time at all, and I would never do anything to endanger them. I can't be allowed to cook unless someone is with me - this particular nightmare may be too tough to live with for any length of time. I called the Alzheimer's Association and tried to speak with Pat or Kim on the pretend ( I know the word is wrong, but I can't find the right one now) of finding out when the new patient support group would be starting, neither was available, so I asked the lady that answered the phone about the 10 minute t10 year statement - now why I could speak so confidently with Wade about this without getting upset, rather a rational discussion I thought, and now with this unknown lady on the line I loose it, and end up crying I don't know.... Pent up anticipation of an answer I didn't want to hear , - relief? I don't know, but I guess I made quite a fool of myself because she had Pat call me back for further reassurance. The people I have come in contact so far seem very sincere at the Alzheimer's Association.

I think I'm going to have to skim through the book one more time and make some notes for myself because there are definitely issues I need to consider further. I know that 10 minute/10 year statement is in there somewhere too.