.…. OK, My friends, I’ve been reading here every day and haven’t contributed anything for quite a while. I’m a slow typer and rather lazy, but I don’t like to feel guilty. So I thought I would tell you a little about two of Helen’s first signs of dementia which I’m sure you can relate to. This was at a time when I had heard the word , ‘dementia’ but had no idea of what it meant. ….. This happened about twelve years ago. (several years before Helen was diagnosed With vascular dementia) Every Tuesday evening we would meet at Los Jaritos mexican restaurant with a group of friends from our Lions Club for a nice meal and social. We had been doing this for years and were good friends with everyone there. One of the waiters, (Aristeo, was his name,) was always quite friendly with Helen and he would sometimes sing to her. This particular night he was singing "Besame Mucho" to her and inserting the word "ahora" into the song. One of our friends, Richard Gonzales, explained to Helen that the words he was singing in spanish meant "Give me a big kiss" and that Ajhora meant "Right now" .......So Helen said OK and gave Aristeo a nice Kiss.... Then Richard said "How about me?" so she gave him a kiss. Then all the guys at our table wanted one so she went around the table and kissed each one. And then that wasn't the end of it. Some fellow at a nearby table said "How about me", so of course she went over and gave him a kiss. At that time we all thought that it was just Helen's way of having fun, but now as I look back on it, I think it was sign of early dementia.
…..This also happened about twelve years ago. My doctor sent me to see a specialist and my Dear Helen insisted on going with me. We waited about ten minutes for him in his office and when he came in he introduced himself and shook both of our hands. He happened to be a rather small oriental man and the first words that came out of Helen's mouth was, "Are you sure you're a doctor?... you look like a little kid"..... Naturally I was embarrassed, but as it turned out, it was no big deal to Dr. Woo. He just smiled and said "I AM... a little kid…. a thirty-two year old little kid". Of course that was just another sign of early dementia, but why do I remember it word for word after 12 years?
Yes, I can remember my DH s first signs I knew then that something was terribly wrong. My DH is an avid St. Louis Cardinal fan. Never missed a game on radio and then tv after they started playing. I mean Never, unless at work, then it was recorded. He missed a game, forgot about it. Then a week or so later he forgot about A large sum of money he had in his name only in an account. We bought a new car and had planned to use that money, but he had completely forgot it. I knew he had dementia after these incidents.they just kept happening. It was two yrs. before a doctor agreed with me. And then my DH was still acing the mini mental exam. The doc started him on namenda because I just wouldn't let him drop it.
My kids spotted it first. younger Daughter was getting married and mom could not remember the wedding plans. But we were in Alaska in August of 2010 and I asked DW to add up a column of 5 2 digit numbers. She could not do it. I did not believe it but she could not do it. (DW was a Summa Cum Laud in Mathematics) I took her to the doctor the day after we came back and she failed the clock drawing test. September of 2010. I felt like my life ended that day. I was 59 DW was 58.
This an EXCELLENT topic. I hope everyone will contribute and pass it on to the general public. Throughout the years, I have tried to educate people that memory loss is not necessarily the first sign of dementia. In my husband's case, it was irrationality - the total inability to see that he was being unreasonable.
What was strange in DWs case was she lost her deep "technical" memory first. (medcine, computer, mathematics) Even today she is good about what she had for lunch etc.
For DH it was his apathy...he stopped caring about anything even playing golf which was his passion. Became totally unmotivated and started getting fired from entry level positions which he should have been able to do with his eyes closed. He became emotionally unavailable and even moved out of the bedroom. He became increasingly aggressive and started physically hurting me when he became angry or frustrated which was a 180 degree change. He was always the kindest man I had ever met.
DH has always since we met when he was 30 been "absent-minded", always misplacing/losing his car key, eyeglasses and wallet, so when misplacing them became more frequent I really didn't notice.
DH lost his sense of direction. On vacation to a place we had been many times before, he took wrong turns, got us lost and had to get directions to get back where we were supposed to be. He always had such a good sense of direction and knew exactly where he was that I hadn't paid attention so I didn't know where we were either.
LFL - we always called my SIL the ditsy blond and she loved it to (not a natural blond). In 2006, one year after diagnosis, she told us she thinks that was symptoms of what was to come.
I insisted my husband do to the doctor because I got so tired of repeating things to him. For years I shrugged it off calling it 'selective hearing' like kids have, but it was getting worse. Before that, in 2004 he was fired from his job for doing something he knew was wrong. Even though he knew it was wrong to this day he still does not accept it was wrong.
In 2006 we were in Florida for a winter job. The managers were verbally abusive - something he was not use to. The manager went on a rant screaming and yelling one day and he snapped. My husband had never encountered someone he could not get along with. After that he was never the same. We were back in Vancouver one day when he was using the table saw in my BIL's shop. My sister and I were out shopping when I got a call from him saying he thought he almost cut his finger off. He wrapped it and held it above his head, but he was right - half way through the middle of the knuckle. Things just kept happening after that, especially the 'selective hearing'.
Of course there were probably subtle changes from years back I did not notice either.
DW's first signs were frequent recitation of the same thought and then when we moved to FL she decided she didn't need her own car any longer and never drove again that was 5 years before she failed to recognize our car while standing in front of it lost in a parking lot. That led to her DX.
The first sign was when he started to stare into space in the middle of a conversation with people. He didn't seem to hear people talking to him. He seemed lost in space. He would often come to five minutes later, but sometimes it would last the rest of the day. I put it down to him being bored by the people he was with, and because he was a writer, thought he was lost in his imagination. This happened in 2000, 8 years before his diagnosis of Mild cognitive loss, probably Alzheimer's, in 2008. He was 88. He began to double pay his bills, or once, triple pay them. I always mailed his letters for him and would catch the 2nd and 3rd $10,000.00 payment for the same new roof. He became suspicious, irritable and angry. He lost his car, his glasses, his wallet ( and then accuse someone of stealing the items). If he took a sleeping pill, he was woozy for hours after he woke up in the morning. He spilled things, walked through them. Became completely self-centered. Made bad judgements, drew bizarre conclusions.
First signs: aggression, getting lost on way home from work, accusing me of an affair (paranoia), at work losing reports people gave him, not able to complete a task, memory issues. Looking back so many things. I use to tell my DD that I was going to write a book an title it "where are my glasses". That title would still work now. I could add so much to the list of things he has lost.
First came anxiety attacks away from home, and compulsive behavior,would put shoes and socks off and on over a dozen times in AM.I also noticed at the time that he did not focus his eyes on any one thing. They would constantly dart allover the room.I really started paying a lot more attention,memory loss did not appear until later.Then came not being able to absorb what was being said to him.Oh, the tantrums ,and screaming at sales clerks. there was this normal looking man making a scene. The funniest one was when I would not buy ice cream( we already had plenty at home) and he stood in the store screaming"I want ice cream" over and over.Like a five year old.And then all the other things,He followed the stages like a textbook.
Definitely sense of direction for my DH. He went to pick up a phoned in take out order from a restaurant one mile from home. He called me forty-five minutes later from some unknown restaurant in a nearby town to tell me no order had been called in. I also began finding things totally misplaced around home. He was never really agitated until after placement and then only when being bathed or changed.
Seems my husband was diagnosed much earlier than many. That is probably due to family history. I am glad though because I really would have gone nuts if it had been 3 years later with all the repeating.
I doubt I'll ever know when DH's VaD began. His life began with the difficulties of Broad Spectrum Learning Disabilities, but no one knew anything about LDs in the 40's. It wasn't until 1987, 13 years after we married, that I was able to find testing to find out exactly what the nature of his LDs were. They'd started the diagnosis focus and treatment programs for children first. In very, simple terms, his brain was like an Apple computer trying to load and process PC programs. Bits and pieces would work, but most ineffectively. He learned to cope, to do many things, and to hide his deficiencies. He was by no means stupid nor retarded. He just learned and did things differently.
In 1988 he had Mental Breakdown (work related). His new diagnosis, Schizo-Affective Disorder. Basically he wasn't understanding the signals from his environment accurately and then was responding inappropriately to them. Now the computer, without useable programs wasn't receiving data correctly and then was sending faulty response messages. Depression set in. His Dr. started Psych meds, and we dealt with it. My Caregiving began.
In 2004, DH asked his Dr. for help with memory issues. He'd never said anything to me. The Dr. gave him a 3 month trial pack of Aricept; said to follow the directions included, and if they worked, he had ALZ--if not he didn't. The Ari9ceopt increased his anxiety/agitation, but otherwise nothing. Quit that. In 2005 her had a sudden depletion of Potassium. Our PCP thought it might be med related, but tried first to correct the problem without changing his meds. That episode was the first time he'd ever aimed his temper AT anyone. Potassium treatments helped for a while, but in 2006 he had a second crisis and went into the Psych-Med Unit for med adjustments. The Drs. decided to test him to determine exactly what they wee dealing with.. How they managed to test him well enough with his 2 existing conditions I still don't understand, but they did and his newest Dx was Vascular Dementia, already at the beginning of Stage 5. At the Discharge meeting, they were talking placement. I told them, I could not continue to Caregive him alone, but with help, I could and I believed the best place for him was at home. Now I was caring for him with 3 brain conditions. The computer without useable programs and not receiving data correctly and sending faulty response messages, now had a Trojan Horse invading and destroying it randomly.
He was home until 2012 when he had an episode which sent him to the hospital. That was the 2nd time he aimed his anger at a person. He went to a NH because a second terminal condition was Dxd while he was at the hospital. If he hadn't had the Dementia ("Stage late 6) there was surgery that could have fixed the second condition. The Dr. estimated we'd have a year. Much different from the open ended prognosis of Dementia. We lost him a month later.
Frankly, in looking back caring for him was exhausting, but it was all the paperwork, Agency contact, appointments etc. and dealing with his relatives (another story), that was the worst part. I really didn't question when his Dementia began. What mattered was he had it and we had to deal.
Very first signs in 2004 when she was 53. I had been retired a year and wondered if that was part of it but it was AD. In 2005 she started showing minor behaviour differences with her career. I thought she was getting bored of working when I wasn't. In mid 2006 I convinced her to retire when P&G bought the company. In August of that year 2006 on the weekend before we were going to start getting the house ready to sell we were at a party in Haliburton. The hostess had just brought down a large tray of snacks and within minutes my wife picked that tray up and started carrying it back to the cottage. Everyone called out and stopped her thinking she might be tipsy but that was the very first clear 'mistake'.
Up to that weekend she had seemed normal. On Monday morning after that weekend I made up a list of things to do because we had agreed we would sell the house and find one in a new town. We had been driving to different towns looking around. Nothing was unkown. But when I went down into the basement and began lifting out the windows from the inside explaining that she could help by washing the basement windows from the outside, I noticed her walk back and forth in the backyard and after I finished the first window I saw her walk by again. I went outside and asked her what was going on and she was confused. She had the stuff in her hands but couldn't understand.
She never came back 100% from that moment. She came back well enough that it took my nephew 2 years to ask what was wrong with his aunt. I thought we were battling depression and the doctor agreed it might be that but we started the tests and were confirmed EOAD in July 2008.
Alzheimer's never let up on her and every 3 months she was different. From first clear sign to today where she is permanently in a wheelchair and minimally responsive is 7 1/2 years. But Alzheimer's started killing the nuances at a minimum 2 years before that.
It will be 45 years from Valentines when we first 'met'. I will be retired 10 years the day before that on February 13. I spent almost 3 months with her retired before things started going wrong.
My husband's first signs were right after he had bypass surgery in 2005. All the stuff the medical pros said about it clearing up is just so much bunk. That surgery in particular can set it off if the disease is in the asymptomatic stages. It only got worse. I often misread some of the physical symptoms as related to the AD when in fact some was related to very very serious cardiac issues of which I was not made aware by his doctors. Severe aortic stenosis is pretty serious stuff. So my Ozzie perished not of the AD in the end, it was severe aortic stenosis and acute pulmonary edema. And yes, it was a hell of a ride all the way though and though it is going on 6 months, I am still exhausted. I am only now getting around to going through his papers.
I'd say it all began in the late 1990s with having trouble remembering friends' names and things like locking her keys in the car trunk at golf. But the thing that finally got our attention and caused us to see a neurologist in the early 2000s was her seeming to lose her sense of direction -- she had been my expert navigator on our RV trips out west, and suddenly she could no longer read a map or visualize distant places. The doctor started her on Aricept, with no specific diagnosis, and finally ventured the opinion of "probable AD" when pressed a year later, in 2002. We never hid the diagnosis, but also never discussed the terminal nature of the disease -- as far as she knew, it was "just a memory problem". She gave up golf when she could no longer remember how many strokes she'd taken on a hole, and then gave up driving after episodes of getting lost coming home from church and turning the wrong way on a one-way street. Then needing more and more help with shopping and housekeeping and then finally ADLs as the years passed until the disease finally claimed her in 2009 -- about ten years after noticing the first deficits. But she remained pleasant to live with and could still fake good vocal harmony to music, one of her enduring passions, up until just weeks before her death.
My wife's onset came 10 years ago when our daughter came to me and said "I'm worried about Mom's memory". She had just gone through AD with her mother-in-law. I realized she was right, and that I had taken over the check book because DW was having trouble getting it to balance. The next few years were a steady loss of abilities, but she has been stable for the past 3 years - no conversation, requires total help with ADL's , but is basically happy in her own little world. I just wish I could get into her world with her.
My DH just out of the blue lost his sense of direction while I never had a good sense of direction but he started to depend on me, that did not work out well.
The first thing I noticed was notes he left all over the house reminding him of his daily routines. Then, the loss of sense of direction which really shocked me, because he was a pro. Then he had to be executor of his brother's estate and couldn't do it, and I got the calls from members of his family. Then he got lost picking me up after his work from my parents house and finally, a call from his boss asking me what was happening to my husband. By then, I knew there was something and from there he lost his drivers licence......and 8 years later, I have a dependent self centered 2 year old who can't follow a direction, talk or any ADL without assistance. What a life!
Getting lost in areas he was very familiar with. Ditsy financial management when he had always been sharp. Lack of ability to find the word he needed. Insistence on a very rigid routine--everything had to be the same, all the time. (So he could cope, and conceal the fact that he was forgetting.) Increasingly poor judgement in lawn and home maintenance. A noticeable intellectual slowdown--a sense of mental stagnation--from a guy who had always been sharp and forward-looking, interested in new experiences and learning…it just slowed and stopped.
First signs for me were him not being interested in things he usually enjoyed and not wanting to do finances anymore. We were in a church group activity in 2006 and his responses in the group seemed strange to me alto I do not think others noticed anything. In 2008 he had surgery for obstructed bowel and the nurse said something to me. Later that year he was diagnosed.