There are days that I wonder whether DH really has dementia. Yet, when I think of the nightmare of the last 24 years that we have been married, when the terrible FTD behavior was at full mast, it just has to be something. Am I nuts? Am I saying he has FTD erroneously?
AND, how much longer will this go on? If in fact he does has FTD, then it has been going on ever since I have known him. We've been married 24 years, almost, and his behaviors have been terrible almost all of that, except for the last year (almost) when after he threatened to shoot me and the cops, his meds were changed. Now he's a happy camper. I feel and wonder whether his poor behaviors for all of these years were transporting him along the FTD road of stages, and now he's in the child like stage after having gone through adolescent, junior high, and 2 year old behaviors. Now he's at a 18 month old stage of being compliant. But, God help me, how much longer will he go on. Will I ever have a life left where I don't have the terrible burdon of caregiving? How much longer?
Sorry I cannot answer your "how long" question, but I can tell you that many of us feel the same way. Am I burdened with guilt for feeling this way? Yes, but there seems no end to it. It just keeps getting worse and harder on us caregivers. I feel as if I will be dead from the stress of caregiving long before AD takes him.
FTD is strange. Many spouses of FTD patients will say that the behaviors were apparent for a lot of years previous to diagnosis. Even the 24 years of which you speak. I guess the damage occurs early and lasts what seems forever.
Wish I could be of more help - just want you to know you are not alone in wanting this to be over.
Biopsy proved my DH had AD. Took him to the doc first time when he was 63, because his behavior had become so odd. As I learned more about it and thought back--way, way back, I think he had it for decades. And by way back, I mean from the beginning. I can point to a phone call I got from his supervisor when he was 24, a phone call I didn't understand at the time. Now I know what the man was talking about. I know a doc who says his youngest AD patient is 29! That means it began in his 20's, maybe teens. I don't know--can they be born with it? We loved each other, I have no regrets about marrying him or caring for him, but damn, this is NOT an old man's disease. We just don't know enough about it. Sometimes I wonder what my life would have been like if my DH did not have AD. But your husband does have dementia, Hanging On, don't doubt it for a second--FTD or not. My DH also threatened to kill me, so I will tell you what a doc told me: Whenever you are alone with him, always look for a way out. Geeeze! No one should have to live like this. As for 'how long' no one can say. Do you have the possibility of placement?
No, Bettyhere*, can't think of a placement. I'm 10 years younger than dh, so I have to keep him home in order to be sure there are finances for my care, too, after he's gone. My family lives into their 90's, some of them.
Yes, Bluedaze*, I am suspicious that when I met dh about 26 years ago, he already had FTD. I say that, because he treated me so badly from that point up until a couple of years ago now when he went on the Seroquel. It was relentless, up to that point.
This is what makes me feel that dh is in the last stages of FTD. If he's had it all of these years, and now he's more nice and compliant on his "happy pills", I think he may have made his way through all of the "stages" and is now at the end of Stage 6, where he isn't so on-the-prod but is more child like. This child like phase he's in is so much better. Could this indeed be found in the last part of Stage 6, poised to go into Stage 7?
We have never had any diagnosis of what type of dementia. But I have often wondered how long this can go on. He is in probably in late stage 5 and is 82 years old. His family all lived to the mid 90's. Even with dementia he could go on a long time.
I am 75 and feel like my life is over. By the time he is gone I won't have any life left if I even make it that long. Yea, I'm feeling sorry for myself and bitching about it.
If we had some kind of timeline, it would be so much easier to plan financially, emotionally and physically for our own well being. My DH is only 78 and could easily go for another 10 years. One of our friends whose wife had AD mentioned that it helped to know that this is only temporary. Thinking about it being temporary doesn't help when we know what happens to make it temporary. How long is temporary anyway?
Yes Daze,I'd like ot know how long is Temporary. MyDH is only 76 and in excellent physical health while my healthe keeps deteriating,will I even have much live after placement?IT'S almost I wish he'd become violent so I can placehim.
I understand. No problems with ADLs and the violence has disappeared, though may raise its ugly head again. Almost wish for something that would force me to make a change.
Hanging On, do you belong to the FTD support forum. If not, I recommend it. http://ftdsupportforum.com/
Hanging On, I too wish I knew how much longer this will go on. DH was dx'd in 2008 with probable FTD and if I look back and make. an honest assessment in retrospect he probably had symptoms (behavioral) at least 10 years before dx. Unfortunately dh has never been a "happy camper" even with his "happy" pills.Aggression is always lurking under the surface. I'd say he is in mid-late stage 6, behaves like a spoiled child. He too threatened and tried to kill me. What is it with these FTDers?
bluedaze* I am going to keep your comment in mind about your DH in his 30's. One day we will be vindicated, hollow victory. It's scary to think people could have it so young and for so many decades, but when researchers start looking at that, maybe it will help solve how one gets it.
I have been saying, I don't know when DH's personally stopped and the AD started. I can look back for more that 16 years and see signs. And yes I was one who was thinking divorce before the dx. DX was at 58. And all along he kept telling me I was the one who was crazy!
blue, I too was thinking divorce before and right after the dx. Before because his personality changed so much (I thought it was a mid-life crisis) and right after because I didn't want to spend everything we have on his care. Dx was also at 58 but personality change was at least 8 years before. Still here.
Looking back I can see this started at least 20 years ago.The first thing I noticed was he seemed to have lost his sense of direction.I never had a good sense of direction.He could find his way anywhere.Now my sense of direction is better than his.He is now in mid-stage.He is hard to get along with and never was before.
Bluedaze, you are on target. I had thought of diverse many times pre dx. But I also knew that I could not allow her custody of our son so I never thought of it that much. And I later thought how cases of eod result in divorce. After her brain injury I learned that TBI is often followed by divorce. We did couples therapy which helped me but not her.
I see that so many of us have long-standing marriages where our dh/dw was acting out with dementia. I feel that where it appears that some of us are in Stage 6, and that the spouse is old (mine is 82), this can't go on much longer. Especially where there are other circumstances, such as diabetes with complications, which my dh also has. I don't think it's wrong of us to long for the end of this hell we've been going through for many, many years. That is only human, and I would say healthy to want it to end.
Paulc, yes, I look in on the FTD Support Forum also. Thanks for the suggestion.
Thanks you, all, for weighing in on this. So much.
Bluedaze, and I wonder how many of the much-younger second wives/husbands on this board, now coping with demented spouses, unknowingly married men or women whose previous spouses divorced them because of their early-stage behavior.
Very good point. Hindsight being worthless-there were signs very early in our 51yr marriage. I was always treated like a princess and didn't see what others saw. And-I don't think I had my head in the sand.
I do know that at least one girl friend who dated him before I came into the picture dumped him twice, with the second time permanent, due to his behavior. I'm 99 percent certain that that was the reason. He had several girl friends after his divorce, before we met and married, and I would bet more than one of those experienced what I've been going through.
It is amazing how much you get used to and don't. Looking back I am amazed what I have put up with over the years and accepted as normal. Good times too. Most people I know write of rapid changes that completely change their spouses.
My husband has had weak executive function and unwillingness to deal with change and been somewhat lost in his own world ever since I have known him. I attributed that to Attention Deficit Disorder, though he resisted the diagnosis. Both our kids have ADD--our son is like his father only worse. The cognitive side of my husband's illness has been that those traits that were already driving me crazy got worse. We had just reached empty nest and I was trying unsuccessfully to improve the marriage when he got diagnosed--I didn't have much to share with him if he wouldn't embrace growth, and he wouldn't/couldn't.
Every now and then I go looking for a genetic disease that involved ADD with particular executive function issues when young and Parkinson's symptoms when older. I've found two, but neither fit. My husband doesn't have the most common gene for Gaucher's (carriers have the pattern I am looking for) and pre-mutation Fragile X couldn't be the link between my husband and son because it is on the X chromosome.
It is confusing when the cognitive impairment is just an exageration of how he has always been.