I think I've read a suggestion for this topic twice recently, so decided to throw it out here.
We were partners in our marriage, until his Mental Breakdown in 1988, March 14th to be exact. He was hospitalized for an electrolyte drop, which triggered a med change and Psych testing in August 2006. That led to his Dx of VaD. He's been treated outpatient through all this, except for the one med. adjustment. I think that puts me at 21 years 3 months,total, and counting, but only 2 years 10 months officially with Dementia.
I'm not sure how to answer the question. DH and I have been married 20 years. We've been there for each other. It has been 1 year since diagnosis and I just continue to do more and more.
I married Foster on May 31, 1991...and learned that he couldn't boil water. Didn't even know where the knives and forks were kept. In many ways, when I moved in, I became his caregiver. He had had household help for many years, and when I came into his life, he had retired and the government moved him out of Embassy housing and into the real world. Often wondered if that wasn't one of the reasons he married me. (Seriously! Determined this after the first year of wondering...). He was totally helpless on his own in the house. Still is. 'nough said.
Fifty-three years married to an Absent-minded Professor. Helpless in a great many ways from the beginning. I can't think of ANYTHING EVER where I felt that he was an expert I could turn to except opera arcana. (abstract math didn't precisely interest me!) So the slide into dementia was ever so gradual. He was respected in his profession and retired at 60 (24 years ago!) because of physical problems, not really mental. But all the practical things others have had to stop expecting of their spouses, I never really could. He would change the washer on a faucet if I asked him to, but had to be taught by my dad. Never even knew how to change oil in a car. Started leaving the finances to me at least twenty years ago, after forgetting to pay various bills (which got inserted into math books as bookmarks). Would do things around the house if requested, and always made sure the house was clean when I came back from a trip, but never did things on his own initiative otherwise.
I used to say, but he changes the cat pans, and that means a lot! and it did! For years after he retired he made very good bread, and wine (sometimes drinkable) so I'd say he was good at fermenting things. He was kind to the boys and has always adored our daughter, but he never was good at intuiting what was wrong. His response to crisis or annoying noises, etc, was to withdraw to his study. On the other hand he has never, ever, been cruel or violent. Loud objecting to things sometimes, but he still can grin, he still has his sense of humor. Even now. Which makes the downward slide so sad.
We have been married 52 years and it was always wife takes care the inside and the money; husband takes care of the outside. It seemed to work ok until dementia starting slipping into our life 13 years ago. Looking back I am sure it started about 5 years earlier, I just didn't realize what was wrong. Now I do it all, inside and out, plus take care of him. No retirement fun; just went from working for a paycheck to working more hours for free. At least I know I am loved, I hear to 20 times a day.
Married 54 years. I always took care of the inside, laundry and money and DH takes care of the outside, vehicles and equipment. He still does but since he doesn't drive anymore, I have to take him to doctor & dental appointments, haircuts, therapy, getting the car serviced or worked on and anywhere else he needs to go. "Me time" is greatly disminished or nonexistant. He was diagnosed about 18 months ago and is holding pretty steady but from reading this site, I've learned that we have a long hard road ahead.
Married 35 years; I am 69, he is 86; DX'd 2003 - symptoms about a year before that - so, been caregiving 6-7 years. Fortunately, I had always handled the finances, so no problem there now. And he gave us driving on his own with no problem! That's the hardest part for me - he has to go with me everywhere and of course, he can't go anywhere by himself. He is still early stage and functions well most of the time. No personal hygiene problems, eats fairly well, doesn't nap at all in the daytime, sleeps well at night. Cannot travel with him anymore at all. As long as we stay home in his comfortable environment, he does really well. For that I am grateful.
I was a caregiver for eleven years.....until my husband died at the age of 61. We were married over 40 years...so more than 1/4 of that time I was dealing with a demented husband. The middle stages were the worst and that is when I had to find a place to take care of him. It was too much for one person to handle. When he became bedridden and unable to move or communicate I brought him home and I took care of him here for over three years. It was not something I had planned for nor ever thought I could do, but in some way I felt it was a way to repay him for the wonderful life that he gave me for all those years. Plus, if the tables were turned he would have been a better caregiver than I was.
During my latest interview on Dr. Teena Cahill's "Nurturing the Nurturer" radio show (link not up yet), she asked me, "When did you know you were a caregiver?" I had to think about it for a minute, and I answered, "When the diagnosis came." Although there were signs, problems, and I had to make lists and direct him, up to 3 years before that, I never thought of myself as a caregiver. It was the day the diagnosis came, and I realized what lie ahead, that I knew I was a caregiver. So I guess I have been an official "caregiver" for 3 years. Unofficially - 5 years.
In line with what some of you had said, Dr. Cahill said that it was 10 years before she realized she was a caregiver. For those first ten years of her husband's disability, she just considered herself a wife, doing what all wives do.
I'm almost 69, DW and I have been married for 30 years, she was diagnosed in 2003. I have been the caregiver ever since. Looking back I can see that she has had issues for about 15 years, with emotions, paranoia and th inability to manage money. I have handled the family finances for over 15 years, she never seemed to be able to manage paying the bills and the checkbook. I can look back at some bouts of paranoia that she had and now understand why they happened.
My DW is now in a NF, she has been there for 6 weeks now, she has spent 6 months of this year in and out of the hospital and stroke rehab. She became too much for one person to handle.
I became a caregiver when we moved to Az. and relized something was wrong, that makes 3 years ago, he didn`t let on anything was wrong until then but when I look back he was having troubles a couple of years before that, thought it was retirment, i am thinking he knew before that cause he would not let me go to his dr. with him said he was a big boy and didn`t need help. I still feel like his caregiver even with him in the nh, there are alot of decisions I have to make for him and have to keep up with the nursing staff to make sure they are doing there jobs so it is a never ending thing will be the caregiver until he is gone.
My dh was dx in 2007, but I knew there were real problem at least 2 years before that. When I noticed there were things he couldn't do and he seemed so irrational about so many things I contriubted to his retirement and his adjustment to moving from Illinois to Ca. Things would be fine for days, weeks or even months and I would forget about these things until they seemed to come out of nowhere and last for days or weeks.
Finally, in 2007 I knew there was a real problem and it was having an adverse affect on me. I went to our family dr. by myself and the dr. told me that he thought my dh might have alz. and referred him to a neuro who dx him. So...we are now in our 5th year of dx and he seems to be a classic case following the stages like clockwork. He is doing all the things in 5 and some of the things in stage 6. He is still mobile but his speech, hearing, and sight seem to be doing down hill. He will 65 March 4th.
I am now at the stage where I am very frightened about his condition because I know the next "things" to go wrong will all be very bad. The neuro has told me I need to be looking for placement facilities. I have looked and decided on the one I would use. I will keep him at home as long as I physically can handle him. I am much older then my dh (78) and know I will have a difficult time with the physical disabilities that may happen in the near future.
One of the things he does that I don't read much about on here for someone as young as he is (64) is the excessive sleeping (in bed not just nodding off) he sleeps between 16 to 20 hours a day every single day unless I have to get him up to go some place. He goes to bed at 10:00 and doesn't get up until sometime between 12:00 noon and 2:00...he eats and then in less then an hour and a half says it is time for his nap. He gets in bed and sleeps for another 4 to 5hours. Sometimes it frightens me because I am afraid to go in the room and check on him in fear that he has died. This excessive sleeping has resulted in him eating only 2 meals a day. He isn't losing weight. He does nothing...nothing. He doesn't understand TV, but watches it. None of his medications, most of which he has been on for 5 years, seem to be causing this sleeping problem. His dr. doesn't seem to think it is a problem and doesn't know why he does it except that it just part of Alz.
Judith- My Dh did the same think when he was on namenda slept all day and night. As soon as he came off he was way more alert and functional attends day care now and so forth. He had an alergic reaction to aricept so was not on that long. He was 64 at diagnosis and is now 68.
My H has what are called erratic sleeping patterns (by primary N).
The meds remain the same: aricept, 10 mg, lorazepam, up to 1 mg tid, keppra @ 1000 mg. He has a variable dx, starting with MCI, then FTD and now they, the docs, cannot decide between general atrophy and mixed dementia.
He is 52, the first dx was in 2006. Sometimes he cannot sleep and is pacing for pretty much a 24 hour stretch. Sometimes, like yesterday and today, he sleeps about 20 hours per day.
Like you said of your dh, he does nothing. A bit of tv and eating and (well, eliminating) and that is about it.
N said it is very rare for someone to die while sleeping. Not unheard of but rare.
As you posted, I too, don't mean napping, but solid sleeping. N says he should be in ALF but H will not go. I've looked and visited a couple of places that I think would be good for him. Because of his seizure history the docs are reluctant to try some meds. I've been told more would be tried if he was in an ALF environment but certainly not at home with only me here.
He refuses that, as well as day care, so that is that.