My husband has been dignosed with frontal temporal dementia. He is only 57 years old. This all began about 5 years ago when we noticed just the little memory slips. It kept getting worse, personality changes, language difficulties, cognitive declines. So I took him to the doctor he had an MRI and they said he had had a stoke and there was nothing that could be done.

So a couple more years went by and he was getting even worse. I took him to yet another doctor and more tests and then the diagnosis of Alzheimers came. He was put on some Alzheimer drugs that did not help at all. Once I got him on SS disablilty and his medicare kicked in the doctor wanted to do a PET scan. This time the diagnosis was frontal temporal dementia with only involvement in the temproarly lobes. Nothing to do about it.

So now I work fulltime and take care of him. He is able to be home alone but has continued to go downhill. He can still make a sandwich, but doesn't cook anymore. He wants to drive but gets lost and has decreased judgement so I don't let him, so I am the evil person at times. Most of the time he is very passive and child like. He will do what he is told and really doesn't cause any trouble. Once and a while he gets very upset and angry because I am the person who won't let him do anything. He has weird hording habits, he acts inappropriately whenever I take him anywhere.

We have been married for almost 30 years and while I love the person he used to be, I do not know this person he has become. But I am honor bound to care for him. I am 52 years old and have no life. What do I do? I have no one I can talk to or relate to, all I have is work and taking care of this person I don't know. Am I being selfish? I want a life and some happiness. I am too young to be this old......

REACH OUT--contact Alzheimers assoc, find an adult day care center for him to go to, he needs structured activities. Hire a baby sitter to give you breaks.My mother is in her 12th year of frontal lobe-alzheimers. She declines each year-so I have to redefine my love for this new person as she changes--but she is always my mother--I just get to see her now at younger ages.

TY, My heart goes out to you. What a difficult situation. You might consider seeing a social worker therapist who is familiar with eldercare issues. I'm about to do that now myself. Even if the therapy doesn't result in any change in my circumstances, it will be a great relief to be able to get all my feelings out to someone who understands. My hope, however, is that she will help me think through the situation I'm in so that I can figure a better way to balance my life.

TY I dont know where you live but this is on our front page click on your state and call the office that pertains to you. They will forward you to the right people. Also look in your local directory if that doesnt get results your Doc can give you some info on groups in your area. Hope this helps...for now we are here for ya sweetie!

Thanks for the encouragement everyone. To answer some of your questions, my husband is in great physical health, there isn't much wrong with him other than a few aches and pains. We do have children; he had 4 when we married, I had 2 and then we had one together. We raised all seven of them and now have 25 grandchildren. Our youngest helps me the most, the rest all have so many children to take care of they are not much help. But they try when they can. As far as his parents or siblings..his parents are both gone, and he has only one brother that hnever got along with so no help there.

I have been looking for a support group where I could at least find people in similar circumstances to talk to but so far no luck...

Most days I do OK, some days I don't.. I feel like I need a relationship but don't feel comfortable looking for one. I just get very lonesome.

I appreciate everyone's kindness.

Sandra I think you have given good advice about keeping working if you can. I had just retired(at 55) when Mike had his stroke. TY-Some of what you describe could have been Mike before his stroke but in his case it was blockage of the right carotid artery.He was getting very confused at times, forgetful(forgot to pick me up at work one day) He had the surgery to clean it out but had the stroke in the recovery room.That was almost 9 years ago. With hard work he did improve for the first 6 or 7 years. What kind of meds is your hubby on now? Does he have any other circulation problems-heart, leg arteries etc. A couple of years ago when Mike had a couple of TIA's he was put on Plavix. He is also on ASA as well as other meds for his heart, BP, cholestrol. You say you hubby is staying home alone while you are at work-is he depressed being by himself all day? What is it he does that is inappropriate when you go out? I try to let Mike choose if possible-obviously he can't for Dr. and PT appointments but I will ask if he wants to go out for lunch or coffee (for example) He is in a whch which sometimes may make it easier for us as it is obvious he has a severe disability. We did go through 10 months of various hospitals and facilities and I certainly hope we can avoid that in the future. FOR US it has worked much better at home. We do have help to get him up and to bed 5 days a week(we chose not to have help on weekends) I also get a few hours respite time a week. I have posted this before-

This is on a wall-hanging I bought a few years ago-

HAPPINESS
is something created within-
Not a treasure you search for again and again.
It's an attitude gained from learning to know
How to deal with the bad things and letting them go.
It's smiling whenever life gives you a reason-
And finding a reason through all of life's seasons.

Author Unknown
Whenever I feel depressed and sorry for myself I read it and also "Don't Quit" or come here and read and share and go to the ECO Bar that usually gets me out of a funk. Please join us often-it is a great place to get destressed. Gypsy

Dear TY: While our stories are different, they're more similar in respect to the effect they have on us. I'm 53, not married (gave up a relationship because of my situation), put my household in storage, halted on plans to move back to California because of 2 sick parents that I now care for in their home. My father is severely brain damaged and paralyzed from a massive stroke, suffers from dementia, post cancer treatment. My mother is blind from macular degeneration, has suffered several TIA's and is showing rapid signs of decline. I know exactly how you're feeling, EXACTLY. While I had no choice in not continuing to work and totally impossible to have an outside job, I totally regret being out of the loop in the work force, not for any reason other than the interactions and sense of normalcy it provided. If push-comes-to-shove, do whatever you need in order to remain employed. Aside from needing the income, it'll prevent you from being shut off from the world. This is my biggest regret (even though I had no choice) and if I could change anything in my situation, it would be this. This step back will prevent you from maintaining some control in your life.

I'm very sorry for what you're going through.

Sandy

quote:

Originally posted by Too Young To Be This Old:
My husband has been dignosed with frontal temporal dementia. He is only 57 years old. This all began about 5 years ago when we noticed just the little memory slips. It kept getting worse, personality changes, language difficulties, cognitive declines. So I took him to the doctor he had an MRI and they said he had had a stoke and there was nothing that could be done.

So a couple more years went by and he was getting even worse. I took him to yet another doctor and more tests and then the diagnosis of Alzheimers came. He was put on some Alzheimer drugs that did not help at all. Once I got him on SS disablilty and his medicare kicked in the doctor wanted to do a PET scan. This time the diagnosis was frontal temporal dementia with only involvement in the temproarly lobes. Nothing to do about it.

So now I work fulltime and take care of him. He is able to be home alone but has continued to go downhill. He can still make a sandwich, but doesn't cook anymore. He wants to drive but gets lost and has decreased judgement so I don't let him, so I am the evil person at times. Most of the time he is very passive and child like. He will do what he is told and really doesn't cause any trouble. Once and a while he gets very upset and angry because I am the person who won't let him do anything. He has weird hording habits, he acts inappropriately whenever I take him anywhere.

We have been married for almost 30 years and while I love the person he used to be, I do not know this person he has become. But I am honor bound to care for him. I am 52 years old and have no life. What do I do? I have no one I can talk to or relate to, all I have is work and taking care of this person I don't know. Am I being selfish? I want a life and some happiness. I am too young to be this old......

TY Welcome in....I am so sorry for what you are going through...stories like this scare the dickens outta me while I am only at the moment caring for my MIL with her issues its always in the back of my mind that this could happen. IMHO you are not being selfish you are entitled to happiness any way you can get it. Have you looked into adult daycare or anything of that nature? Are there family members that could help you or are you alone in this? And sweetie you do have people you can talk to...We are here... we will listen whether its to let out the frustration you feel or to ask a question. Also have you got any support groups in your area they have great ideas and resourses for the problems you are facing. Give it a try

Too Young--Good Lord, woman. I feel so badly for you! You are too young. Do you two have children? I do not see any mention of the children coping with their "new father". Well, my opinion, which is just that as I am no moral authority or psychologist or whatnot...is you deserve your life. You have cared for him these five years and you have been a wonderful wife of 30 years, but it sounds to me as though it is time to move on. How to move on is the thing. I am wondering too what his parents and siblings think of what to do. They must have some strong opinions?? After listening to you, I think if I were you, I would see through the marital commitment by placing him in the very best care facility I could find. I think states differ regarding what level of care people receive, and so hopefully your state has some excellent care facilities close to home. And of course to go and see him regularly after he is placed--not any longer as a wife, but as a lifelong committed friend. It's rough TY, but realistically, you deserve your life and you have a large chunk left. It's the only one ya got, girl, and you can still show him love and respect. I wish you the best with these difficult decisions.