Living with total madness

[Isle of Mull]

My name is Morvern. My husband has just turned 50 and last july started getting tests etc. He has now been diagnoised with Frontotemperail Dementia. He has never been able to accept that there is anything wrong with him. Has told family and close friends that i have brain and mental problems. Also told to not so close friends. I live in a small town whre everyone knows about everyone else. Because my husband looks well and healthy people dont realise how ill he really is. I feel that it is my husband who has dementia but it is me that is becoming demented. My husband has now been told by specialists that he can no longer drive He cant accepted this. At the moment he still has the ability to work only because there have been no reports from his work. The last time we were in Glasgow for appointment with specialist i was told to start looking for respite but also have to look for long term care. I do love my Husband but really am struggling with whats going on with me as i do feel the man i married 6 years ago is no longer here and I have been left with a stranger, the things that my husband believes are true are so crazy; our 6 year old granson even told his papa to stop telling stupid stories. My husband has always loved grandson but know has to be watched as though wee fella brings out very child like behavior with husband. Sometimes i feel a though i am standing total isolated my 19 year daughter is also suffering through all this. I am so scared of what is ahead of me, this has all been explained to me by doctors etc. Some times just want to run away and not come back. Sorry for this long moan if there is somone out there in simaliar position please contact me.

 

[Amy]

Hiya there,
I'm not in the same position, but there are many on here who are and I am sure that you will soon start to get some replies. Just wanted you to know that you are not alone. You are now part of a wonderful group of people who do all they can to support one another.
Take care.
Amy

 

[Lynne]

Hello Morvern

I'm so sorry to read of your situation, made worse by your husband's refusal to accept that he has a serious health problem. His denial - and worse, his telling friends & neighbours that YOU have a mental problem - is awful for you to have to deal with, in addition to your grief at what is happening to you both.

I don't have personal experience of early-onset Dementia (my Mum is 86) so I can't offer "same experience" type input for you, but so many of the kinds of dementia exhibit the same behaviours and symptoms that I can understand much of what you must be going through. Especially your cry from the heart ".. it is me that is becoming demented". Oh yes.

Have you seen the family doctor on your own account? You are under tremendous strain, and you need support as much as anyone else - more in fact, if you crack up, what then? Having said that, you will have to recognise one day that your husband's illness has made him deteriorate beyond care in the family home, by you alone. I don't say this to distress you, but rather to try to head off the guilt-monster which rides on all our shoulders. Whether it's a beloved Mum, or a much loved husband, my or your willpower alone will - one day - not be enough. That's a fact, not some comforting flannel. So don't feel we shall be thinking you don't love him enough to take care of him. We know that's not the case. We also know what you mean by your husband's body now seemingly being inhabited by a stranger, with whom you have lost meaningful contact. He's in there, but held prisoner by this awful disease.

Are you able to talk openly to other members of your family? (when your husband is not there I mean) Are they aware of how things are likely to develop? You say "...this has all been explained to me by doctors etc." but how much do your children (adult children) and your husband's and your own brothers/sisters know.
If you look at the top left hand corner of the screen there is a link to Factsheets. As well as being helpful to you, they might be helpful in explaining to other family members what is going on here, so that they can help to support you both. So that they can have some idea of how to help. It's a changeable situation; what may work tomorrow might not be as helpful next year, or even next month. You have to keep communicating, for your sake and theirs.

Have you made contact with your local Alzheimer's Society branch? I know you said the diagnosis is Frontaltemporal Dementia, but I think you would find that they try to help families who are dealing with all types of dementia. Talking to someone nearby might make you feel less isolated. You will know from reading on this Talking Point forum that there are many people in the UK coping with dementia (some from the US & Australia too). You are not alone; we DO know how despairing you feel; we do know the relief that, sometimes, just telling your story can bring.

Please come back for more answers from those more knowledgeable than me. I suppose that, almost by definition, partners/carers of early-onset sufferers may still be working, so may not get to log in here every day.

Best wishes Morvern

 

[Rosalind]

Oh I do so know the 'I want to run away' feeling. My husband is some 20 years older than yours, but has always been extraordinarily youthful - I never felt the 16year age gap until now, when the man who once knocked 10 years off his age in order to get a job keeps on and on about suffering from 'old age'.

All I can advise is ask for all the help going - and ask what help is available. At first, I resisted because I was refusing the acknowlege what the situation really was. And then the idea of 'befrienders' calling round to chat to husband did not seem as if it would be that much of a help. He tried a day centre but said the room was very small and the people were all mad (it was a small group, supposedly at the same stage as himself). The befrienders, however, are a godsend - they come from Alzheimers Support.

These days, because I have been living with it for over 5 years, I really can't remember what he was like before. I know we had good times, and wonderful holidays, although to be honest it was not a marriage made in heaven, but nowadays I feel I am a skivvy *** mental nurse. If I was a mental nurse, then he would probably be a relatively easy patient to care for, but I'm not, and I desperately miss having a proper husband - you know, someone you can ring up and wail at if you get a flat tyre, or who will serve drinks to guests while you cook dinner, not to mention someone to talk to. His conversation these days is usually about his school days, or if he is being very up to date we might get as far as National Service, but I can't remember a time when he has talked about ANYTHING that has happened during our 22 years of marriage.

The way I keep sane is to be selfish - he can, thank goodness, be left at home, and I go out and do things by myself. Not the most thrilling things, but I am involved in a couple of committees and a Writers Group. And I have found coping much better since starting to take regular exercise - with extreme reluctance I joined a gym in January and while it is not exactly fun it has made me feel, and sleep, a lot better.

You will find this site good for letting off steam with a good rant - it does help knowing there are others in the same situation.

Good luck

 

[Lynne]

I just 'fell over' this on another thread, and hope it may be useful.

I don't know anything about Pick's disease myself and you may have looked at the factsheet already but in case you haven't here is the link

http://www.alzheimers.org.uk/Facts_a...nfo_fronto.htm

Also there is a support group specifically for Pick's Disease

http://www.pdsg.org.uk/

Best Wishes

 

[barker]

Malvern

Hello Malvern

I think I do know how you feel. My partner of 11 yrs has been steadily getting worse for the last 3 years. He is 62. We are both widowed and had hoped to pick up the threads again and have a settled old age, but it is not to be. He has finally been diagnosed this week as having Pick's Disease and the specialist warned me that it was going to be 'a long haul'!

My paartner doesn't specifically deny having a problem, in fact in his more lucid moments (and they are few) he is more than aware of the problem. However, as mentioned, he is not there to share life with anymore, that person is gone. We carers seem to live in isolation. No one to share life with anymore: friends and family. that no matter how hard they may try, cannot really appreciate the constant chipping away of your sanity. and the loneliness.

I find that carers groups help. Try and get some outside help. A sitting service so that you can escape for a while. The befriending service is very good. I put him in respite for a week in Feb, and although it upset me and I felt very guilty, I have booked another week in June. I don't really know about AD but the fronteral lobe disease seems to rob the sufferer of the ability to appreciate the feelings of others, and that really hurts. My partner was really loving and understanding but of course that has all gone.

Being responsible for everything, running here there and everywhere and doing someone elses bidding is a nightmare, and it does get more and more difficult to remember why you fell for them in the first place, even though you do love the remnant of the person the disease has left you. Thats how I feel anyway.

Sorry to go on. Please keep in touch Malvern as I'm sure it does help.

 

[jc141265]

Morvern,

Just to let you know, my father is now 61 (almost 62) and we have been living with his dementia for almost 7 yrs now. His original diagnosis was early onset dementia, but has been reconsidered as fronto-temporal dementia of the alzheimer's type because he has tended to display a lot more of the fronto-temporal area of brain damage than straight alzheimer symptoms. I.e. he doesn't appear to forget things so much as have trouble still telling his body to do things, trouble finding words rather than forgets them, and these days it has gotten to the point where he basically doesn't speak, but yells or says nothing or says words on the odd occasion but you are never sure if his words have meaning or if they are random words that his brain has spat out but weren't meant to convey meaning.

Wanting to run away, I know the feeling, wanting to be able to leave Dad on someone else's doorstep, the thought crossed my mind many a time...what would society do, if we weren't around to look after him, why do we have to look after him? Mind you, I say all this whilst loving my Dad to bits and being devestated even now 7 yrs later by his diagnosis and prognosis. Your mind just tends to play with these kinds of ideas, looking for a way out of this horrible situation. I even used to amuse myself with the idea of framing dad for a crime so that the state would look after him! Maybe we are the ones who go crazy and they are the more normal??

A lot of what is difficult about this disease is also managing to still remember the person your loved one was, remembering that the horrible nasty person you see, is not really them, but a manifestation of the disease, but also tempering this saintly forgiveness with an expectation that your loved one is still somewhat responsible for their behaviours...you can't let them get away with every horrible behaviour but you have to realise that you can never be 100% sure if it was the 'real' them or the disease that was responsible. If you let yourself believe that all their behaviours are a manifestation of the disease then whats the point of fighting for them, caring for them, when they no longer appear to be there? If you let yourself think though that all these behaviours are theirs, their choice, then it wouldn't be long before you could no longer love this new version of your husband (or in my case my father) and again there would seem little point to fight for them, or care for them.

But you and I, and quite a many others are trapped in this weird no-man's land, and will be so for a long time yet. We can't give up because we have not only our loved one needing us, but often other family members as well...although sometimes giving up seems like the only thing we desperately want to do. So all I can say Morvern is take advantage of this website, any time you want to scream, do bloody murder, when the unfairness of the situation seems all too much, come here and spit it all out. Most of the time you will find someone who understands, other times you will just find good people who offer hugs and suggest advice, and other times again, even if no one understands nor can help, its a goddamn relief just to get all the pain and frustration and stress out rather than keeping it all bottled up inside. Last but not least, this website and its members can give an awful lot of practical advice to carers as they come across new obstacles each day along the path of these dementia diseases.

Good luck, and I will always be here to send a message to if you need someone's ear.

 

[KenC]

Dont give up

Hello Morvern,
I can understand how your husband felt. At 56 I was diagnosed with Dementia and as a College Engineer I lost my job and house in one go. After this my mother died and I thought that things could only get worse. I have now moved back to my home town after 30 years living in the South of England, and things are starting to look better again. Part of my problem was accepting that something was wrong and then accepting what the problem was, seemed even worse. Now I am meeting new friends with Alzheimers and Dementia and everyone seems to go out of thier way to make you feel at home and welcome. People always look at me as if there is nothing wrong with me, which is odd because I know I have changed a lot during the last few years, but perhaps while the inside has changed the outside looks the same.
I also lost the ability to concentrate so I can not do a lot of things I used to, But I am learning new things. Like an old saying your never too old to learn new things.
Best Wishes and keep writing.
Ken

 

[PatH]

A common link

Hello Morvern,
I understand exactly how you feel. My husband has Altzheimers for 10 years now although he wasnt diagnosed until much later. When I first spoke to the local doctor that my huband was having problems and I felt that he had AD I was told that I was suffering from bad nerves. It was some 2 years after that we were told that he had AD. He refused to accept it and I had many traumatic times with him. I can remember him taking me out to the garden to see men coming out of a small scrub in our garden. Because I didnt agree with him he would become very angry ,I nearly felt that I should see these men as he was so convincing. I also wanted to run away which I verbalised to my daughter at the time she was so upset with me and to be honest there were times I hated him and I'm not proud of it.
I think every phase of this disease poses problems for the carer. My husband was admitted to a specialized unit under the mental health act because of his violence and I could not come to terms with what had been done. The guilt almost ruined me.
I think no matter how much you do for your loved one you can only see what you cant do and therefore the guilt. The only winner in this case is the disease its self.
I kept a diary at the time because I had so many feelings that I needed to vent however when he was admitted to hospital the guilt that I felt made me destroy it as I was ashamed of myself.
Pat

 

[connie]

Pat, warm welcome to TP.

Thank you so much for feeling able to share your experience with us.
I am sure so many will recognise parts of your story, sharing your guilt and denial.

Please return to us often, all shared experiences help. Connie

 

[PatH]

A common link

Thanks Connie,
It has taken me some time since joining to post a comment. my husband was diagnosed in his early 60s. We were a very private couple and it was difficult for me to let anyone know what was happening even through the most dangerous times.
Morvern touched a cord with me when she said about running away. She is right to share her feelings because that is where I went wrong and have suffered since. I remember the first time I wanted to do the same (just as if it were yesterday).
Donal and I have come through many experiences since then,He can no longer walk,talk, feed himself and is now waiting to be placed in a nursing home near by. I travel about 100 miles 3-4 times a week to be with him.
I hope I will be able to contribute ,thanks again
Pat

 

[Margarita]

Glad I pop in to have a read, as there a lady at mum care home who is 47 years old & has Picks Disease, her sister was asking me to find any information about it on the internet.

The sister said that she has Picks Disease ,but I did not know it was Frontotemperail Dementia. untill Lynn left that link to Picks Disease surport group

Thanks Lynn for that link shall pass it on .

 

[daizee]

Hi Morvan, though I feel like saying 'sister' as I'm sure what we are going through makes us closer than anyone else in the world even relatives. My husband was diognosed around age 47 and is now 53 and very severe, has to be fed ,is incontinent, can only whisper odd words, and just shuffles a few steps with help. He was tall, strong and very handsome , so clever and hard working and I was the love of his life. We married when I was 16 (pregnant but who cares we stayed together for 37 years) ................ anyway I can't put it any other way except to say.........'It's bloody awful, it's sad , its lonley and it hurts like hell........ why does this dreadful illness have to take the person we took so many years to get to know, who got to know us so well, so intimately, and make them slowly disappear. I look at other couples our age and wonder ...'why us , what did we do so wrong to be punished this way'........... but don'y feel guilty, I know that when you say you want to run away , what you probably really mean is from the situation, not your husband, like me, you just want it to stop and be the way it was supposed to be when we planned our lives all those years ago, but it won't and it's not fair..........so we just keep on going making our selves find the strength we know we're going to need............and be bloody proud of ourselves when we make it through another' hard days night'.........................Take care Daizee

 

[jc141265]

A strange kind of envy

I look at other couples our age and wonder ...'why us , what did we do so wrong to be punished this way'

I used to be very conscious that I did that a lot...in my case, I wasn't looking at other couples, but looking at any men who looked older than dad and being 'envious' of them (I can't think of a better word for the feeling, its not really envy though, perhaps frustration, hurt that god picked dad, a 'why him' feeling ?? )...For example, I'd see a man taking the garbage out, and think to myself that he's probably grumbling about how he's getting old, how his knees hurt and he has no idea how good he's really got it. I'd have these kinds of thoughts about every older man I saw in the shops, at work, outdoors and so on. I don't do it so much anymore...I do note it now sometimes still like an old habit, but it used to feel like a sharp pain to see others in a far better position than Dad...I guess I finally came to accept it, although I don't really want to, even now.

People really don't know how lucky they are.

 

[Nutty Nan]

Yes, I too catch myself occasionally making pointless comparisons, especially when friends or colleagues openly moan about their husbands...... My husband and I did not expect 'the earth', we were content with simple pleasures like half an hour in the evening sunshine on our garden bench, a glass of wine, an evening with friends or a walk in the bluebell woods ....... but all that sharing has gone, and I have to bite my tongue when others take so much for granted without one thought of how easily the things that make us happy can be denied us.

What's even more odd is that I sometimes watch total strangers and think 'my husband used to do/say that before he became ill. I wonder whether he/she (the stranger I am observing) will, in years to come, end up like my husband' .....

It also suprises me sometimes how long we have both been on this journey - thank heavens we did not know 6, or 8, or 10 or 20 years ago where it would take us!

Enough already - time to look at the bright side of things!!!

 

[Norman]

I look at other couples our age and wonder ...'why us , what did we do so wrong to be punished this way'

Nat & Nutty
I think this is a thought that most of us have ,I do.
In our case we were just happy to enjoy the simple things,ample income not wanting for much.
Lots of love just happy to be together.
Why,why why?
Norman