1. Harold Hill

    Harold Hill Registered User

    May 12, 2007
    20
    London
    #1 Harold Hill, May 12, 2007
    Last edited: May 12, 2007
    Under the guidance and leadership of our social worker I have just placed my wife into a care home. She is 52 and has experienced a sudden onset of dementia associated with Parkinson's disease in the last 12 months or so.

    She is the youngest person in the home by some 25 years.

    I am 50, our son is 16. I cannot retire to look after her, nor do I want to as I fear I would go bonkers. Is there anyone else out there in similar circumstances?

    Our son just feels relief, I feel crushing grief and guilt.

    :(
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,537
    Kent
    Dear Harold,
    Welcome to TP.

    There are definitely people on TP with partners the age of your wife. I`m sure you`ll get some response before long.

    The mixture of guilt and relief in you and your son are so understandable. You can only do what you are able to, and it has to be faced.

    There is a lot of support for you if you want it and it might help to read/hear of the ordeals of others.

    Keep in contact and take care.
     
  3. annesharlie

    annesharlie Registered User

    Welcome, Harold, and thank you for posting. I am so sorry to hear about your wife, so young, and already needing to be placed. It has to be so hard for you, indeed, the whole last year must have been very hard. I am sure you feel exhausted, and trying to work too. At least you know she's safe and well looked after, and now you'll be able to spend a little time with your son and do some things with him - that's important for both of you. Your feelings of grief and guilt are totally normal. It would have been better if there was a place with a few younger people for her to go to.

    My husband is also 52, and was diagnosed just over a month ago with a Frontotemporal dementia. He's still at home but not working or driving - we don't need caregivers yet. We have a 17 year old son at home, it's hard on him to come to terms with all this. For now, since he is driving, he can have trips out with his dad and try and have some good times with him while there is still lucidity.

    Do post any time with questions or updates.
     
  4. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    Hi 'Harold' I am sorry for you and your family. My husband is 56 and has been in hospital since September last year for assessment and went into a home in March this year. He's severely demented too though he doesn't have Parkinsons. 'Luckily' he's in a home where they have an early onset unit and they are all under 65, all 12 of them but they don't 'notice' what age each other are I'm sure. Most of them don't communicate with each other really, just wander about or sit about on their own. The staff are very good and do jigsaws and play draughts with those who are still able but that lasts about 5 mins if that for the ones who aren't too severely demented.

    My husband was taken into hospital to be assessed after going to a day centre centre 3 or 4 times and then they decided he needed more than they could give him. It was decided for me that he would go there for a minimum of 4 weeks but as I said, that was last September, he's deteriorated rapidly.

    It is very very understandable that you will feel grief and guilt, we wouldn't be normal if we didn't. I can also understand how your son feels. We can't do anything about this unfortunately, we just have to go along with it and learn to live with it, it is very hard.

    Sue
     
  5. Harold Hill

    Harold Hill Registered User

    May 12, 2007
    20
    London
    #5 Harold Hill, May 12, 2007
    Last edited: May 12, 2007
    new to all this!

    Thank you - am not too sure of the etiquette of this process.

    Suddenly I don't feel so alone.

    To be honest, I don't think age has much to do with it. This disease seem to not take too notice of age so its the needs, rather than age that are important.

    The home is homely and small and a short walk away. My wife seemed almost pathetically pleased with the modest room and the fact that she was to be "looked after". Not so long ago she would have preferred root canal work rather than even set foot in such a place.

    After 7 years of caring, and 27 years of marriage and 31 years of partnership it seems I have no point to life. Thus my having the time to enrole on this website.
     
  6. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    It's fabulous that so many people, including me, say they don't feel so alone when they come on to TP. We had only recently moved to this area when I noticed that Steve really wasn't well. I didn't know anyone at all and have never known anyone with dementia and I did feel SO alone but here is the best place to be for questions and answers and support etc. I rang the Alzheimer's Society and the two women in the office there have been wonderful, I don't know what I'd have done without them either. Steve was diagnosed in August 2005 but I knew what the problem was already, just could tell. Since then I've come to understand a lot of things so much better and learned to live with this thing.

    Steve's home is only 2 miles away from our house and it's really lovely and the staff are great and I'm really happy that he's there and being cared for so well.

    Your wife was very young indeed if you've cared for 7 years. There is a lot of point to your life, your son for one thing and I'm sure you will feel differently in time as your wife settles at the home. After caring for a long time you will eventually find you are able to have a bit of life to yourself again which helps enormously.

    Sue
     
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Harold

    I was 43 and my wife was 50 when her symptoms of mixed dementia started.

    I cared for her until she was 61 when she went into care, where she still is.

    Next year we will have been married 40 years, and we will have been a couple for 42 years.

    Yes and no, in my opinion - and we can all simply give our opinions on our own situations and others we may have observed, on Talking Point.

    Where there is a specific challenge for families afflicted with younger person's dementia, is that one or both may have been/may be employed.

    While it is possible to remain employed while caring, depending on the stage the person is at, it is not easy, and there comes a time when work becomes compromised. Rightly so, but that doesn't help if the house depends on the income.

    Also, there may be offspring who are still young. We did not have that challenge, but it is an issue.

    Being a carer of a spouse with dementia often makes one feel as if one has written off the rest of one's life because the focus of that life is being taken away, cell by cell, memory by memory.

    For someone older, the remaining life span is less [possibly - we can all be hit by illness or buses].

    For a younger person, there may be another 20 years on top of what an older person may have to live That is a difference that hits hard.

    Care facilities for younger people with dementia - as you note - are not good, and the person tends to get lumped in with people who might be their parents, yet have the same affliction. This causes them confusion and distress, and it hits the carer badly as well.

    I am really fortunate in that Jan is in a care home where there are some other young onset residents, as well as some who are as old as 90 - yet in better condition than Jan...:(

    Every other challenge and pain of a younger family may be the same for the older one - though I know for sure there are many things that face an older couple where there is dementia - that does not affect the younger family.

    Welcome to TP. Sorry you have to be here, but there probably isn't a better place for you to talk to others in a similar situation.

    Best wishes
    Bruce
     
  8. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Harold, don't know what to say to you, what is there to say? For one so young to be incapacitated in this way, mentally and physically.

    You could not have found a better place to receive support and knowledge.
    Hope you will continue to visit us. Just try to never feel guilty. When you have done all you can, you have to accept outside help. You also have your son to consider, it's his life too.

    Take care of yourself, love,
     
  9. cris

    cris Registered User

    Aug 23, 2006
    326
    Chelmsford
    Hi Harold. My wife was about 48 (1996) when I noticed signs. She is now 59 and I am 57. We have no children at home unlike yourself. I write this to let you know as the others have that there are some youngsters out there with this illness. You have a son that i am sure your wife is proud of and to know that you will there for each other through this period of your lives. Don't feel guilty of anything as i am sure your wife knows that you love her.
    cris
     

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