Daunting choices to make for 57yr old mother with dementia

Discussion in 'Younger people with dementia and their carers' started by jsmith, Aug 20, 2010.

  1. wrow88

    wrow88 Registered User

    Feb 10, 2010
    Hi Jsmith,

    I've read these forums for a while now but never posted, until now. After reading what's happened to your and your family I can understand what your going through and how heart breaking this horrible disease can be.

    My names Will and I live in Surrey, but currently I'm at university in Nottingham. I'm 22.

    My mum is 53. She was 51 when she was diagnosed with dementia. After trying to care for mum the best we could at home, it got to the point where we were struggling to cope. She didn't take to the day centres and regularly refused to get on the bus. We never really went down the admiral nurses route as my dad was worried about finance. In the end, unfortunately, She moved into a full time care home just under a year ago.

    We had many worries and reservations about whether she'd settle into a care home where the average age was 68. It never gets easy seeing her in full time care, but what has increased dramatically, is the quality time we spend with her. We can now live our lives knowing that she is safe, and well looked after, and when we do spend time with her, she's happy, laughing and its almost as if mum's 'normal' again. Most of the time anyway.

    If you have any questions, feel free to ask! If not, hope everything turns out the best if can for you and your family.
  2. broka01

    broka01 Registered User

    Dec 22, 2010

    Have the same situation with my brother - and trying to find a care home in a radius of London - but they all cater for older people with severe problems. My brother is in the early stages of dementia and wants stimulation of other people who are stil able to converse. Why can't they set up one home in each area which deals with fairly lucid people who can still appreciate company, quizzes, etc. If anybody hears of such a home in the London area, please post it!
  3. Amber 5

    Amber 5 Registered User

    Jan 20, 2009
    Reading this thread is extremely sad, but well done to all you families who are taking the time and care to find the best solution for your own mums/dads.

    I don't have specific advice for early onset sufferers as my mum is 80, but I can relate to the whole looking for the right care home and dealing with finances, moving etc. I have to say that I was pleasantly surprised that my mum settled fairly quickly into her care home and was calm (most of the time). It seemed to me like she was almost relieved to have had all the difficult everyday tasks taken away ie. shopping, cooking, etc.

    Having said that, even at 80, she saw the other residents as "all old fogeys who didn't make an effort to walk etc. etc." This was one aspect of her move that I found difficult to handle at first. Eventually she stopped being so negative and seems used to the place now. She has had one more move to the dementia unit upstairs now and the other residents are very mixed. Some far worse than her and some probably better but who are wanderers!! The youngest resident there is 56 I believe and he seems to hang around with one of the older ladies a lot! Although they are in the dementia unit, there are activities on offer and they are encouraged to have a go (even if they aren't in the right mood, lots of distraction techniques are used). They also go out on trips, go downstairs for musical entertainment, tea and cake, for walks in the garden when the weather is kind! etc.

    It is such a difficult thing to accept for any mum/dad but must be so much harder for the younger age group. Sadly there aren't many places specifically for younger people as yet - maybe that will change eventually! In the meantime, they have care needs which need to be met and I truly hope that you are all successful in finding the right home/solution for you. It is worth looking around to get comparisons. I found that some homes are very different to others and some you would never be able to consider!!

    The Alzheimers Society and Admiral Nursing Direct are good contacts for advice and support.

    Best Wishes, love Gill x
  4. parkerdart

    parkerdart Registered User

    Jan 8, 2011
    In response to daunting choices

    I must first tell you that this is my first time on here and my very first post so if I am sounding strange, I must apologize. Your mom's story and mine sound very similar. I too have two sons, mine are ages 29 and 31 and I am 59. I have vascular dementia and was also first diagnosed with severe depression and anxiety after my husband left me 7 years ago for a woman 18 yrs. my junior. I am most sympathetic to your mom's ordeal and am feeling much sorrow for the pain I know she went through. I still am living in my home but my neurologist is getting more and more insistent that I cannot remain here because it is no longer safe for me to live alone. For me, and probably your mother too, I do not want to now or to ever feel like I am being a burder to my sons. I know they don't feel I am but what I feel while I can still sometimes remember what I think, is of most importance to me. They say it is now their turn to take care of me and although I love them for that, I do not think that is what any mother wants is to "crash into" their child's life. I did do much legal paperwork while I was still considered "competent" so they would not have to make so many tough decisions. If you now need to make decisions for her, I am sure your mother would understand and support any decision that you thought was in her best interest. No one wants to lose their independence, feeling of self control, their life as they knew it (and the list can go on and on) but unfortunately, this horrid disease will eventually take all of that away from us. I am sure your mother always has and always will want what is the very best for her boys...peace, happiness and love - much, much love. Try as you may, you will not be able to rid her of this disease. Be sure she is safe, comfortable and well taken care of - that you can do for her. I am not so sure though that some one so close as a child is always the best person to do that. I hope in some way this may be helpful to you. Do not feel guilty please. You sound like a great kiddo!
  5. piedwarbler

    piedwarbler Registered User

    Aug 3, 2010
    South Ribble
    Welcome to the forum parkerdart , though I wish you hadn't had to find us. I admire your bravery. X
  6. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Welcome from me too. I also admire your strength.
  7. MandyW

    MandyW Registered User

    Oct 11, 2005

    So Sorry. Its plain awful. As far as I aware of there are no residential care homes for younger people with dementia certainly in the Surrey/London area. I have searched-trust me! You just got to do what you think is right. You have got to live with the decision, so dont make a quick one!
    I feel your agony.
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi everyone

    I thought I'd just pitch in on the subject of Young Onset dementia, though the book has closed on the experience for me now.

    Whether one is a child or a spouse/partner of a younger person who has dementia, the challenges are substantial. My wife was finally diagnosed aged 58, but had clearly had developing dementia from at least the age of 51.

    From 1991 onwards we found that services were sparse - none really to help at home, though we did have some sitters provided by the local authority for a while, until my wife decided they were there to steal her cakes.

    Just getting a diagnosis was hard, and it took seven years or so.

    The day care centres were full of octagenarians, and it was plain cruel at that stage of her dementia to try and take her there. However, it was all that was on offer, so we went until three days in, we were banned, because she just wouldn't have it.

    There was no meaningful respite, and the story seemed to go..."struggle on at home until you reach the point where we'll need to care for you too if we didn't do something".

    From my experience, I think it unlikely that there will be many care homes that cater for people in their 50s. The home that Jan moved to in 2001 was one that specialised in younger people, in Hampshire, but even that was full of residents up to the age of 100.

    I found that by the time Jan moved there, aged 61, the age difference mattered more to me than to her.

    What mattered most was the standard of care, and that was outstanding, from the day she entered, until she passed away in August 2010.

    Good care is a double edged sword. Care needs to be good, of course, but when it is that way, the person is kept in their condition for a very long time indeed, and that is so hard to see, and I think cruel to them. It is an impossible dilemma. So the younger person care homes we might want to see are full of older people - or younger people who look as old as those who really are aged. The concept of a care home full of 50 year olds with dementia would seem to be good, but I don't think it is going to happen easily.

    However we always need to strive for the very best for their care so the search is well worth while. The more cases of good practice that can be illuminated, the more chance that they can be set as a new standard of dementia care.

    As one person said in this thread, specialist dementia care homes are probably going to be the best option, but the difficulty remains of how to bridge the time between managing at home, and going to a place where the majority of residents are well advanced in their condition.

    A final point is that we were fortunate to have NHS Continuing Care funding for the whole time Jan was in residential care.
  9. tinytina1975

    tinytina1975 Registered User

    Feb 7, 2011
    hi jsmith
    my mum is 59 and was diagnosed with vascular dementia 5 yrs ago, we tryed our hardest to care for mum at home but in may 2010 we had no option to put her in a residential home, we felt the same as you about her bein there with people that was much older than her, she has settled in realy well and now when we take her out she only lasts about 5 mins n wants to go home. my mums dementia was very steady for about 4yrs but in last 12 months its gone realy bad, shes had 7 T I A'S and in last 5 wks as been in hospital 3 times, currently in hospital now with a water infection which makes them realy poorly, my heart goes out to anyone that is goin throu what we are, we realy havent been advised well on my mums illnes n i seem to be having to stamp my feet all the time to get answers n alot of people av turned there backs on us. im glad ive found this forum to talk to others goin throu the same.
  10. shelly73

    shelly73 Registered User

    Nov 30, 2009
    Wrong Area

    Sorry I'm in the wrong area to help but am in the same position as yourself as my mum is only 57 too. The thought of putting her in a home scares me to death.

    I can't help with the good care home search but if letting off steam would help, I'm willing to listen :)
  11. Kerri

    Kerri Registered User

    Jun 10, 2011
    Wrong end of the country to offer practical help I'm afraid but I know exactly what you're going through - being a young carer (I was 27, now 31), struggling at home, taking the plunge into care homes (full of "senile" people as my mother puts it), having to face her lose her treasured pets (we inherited 3 dogs and 2 cats; the dogs died soon afterwards, pretty certain was stress related but added to the guilt burden anyway, poor little things; the cats don't give a toss which is typical I guess!), the turmoil about whether or not to tell her she has dementia (we haven't - it developed very acutely over 24 hours and I think we'd now have to break the news to her every day) and whether or not to tell her we've had to sell her house (she was so proud of paying her mortgage off as a single mum and would be mortified to know it's all gone into care home fees)...

    I wish I'd found this site at the time, as it was a very traumatic experience (particularly as an only child perhaps). Now four years along and settled into a new form of normality, still the odd struggle but life does get easier. Learning to miss your "real" mum and embrace the "new" one is a steep learning curve. Learning to carry on with your own life is also easier said than done but I kept telling myself every day that that is what my "real" mum - lifelong supporter and best friend - would always want for me. I'm sure that's what your mum, hidden in there somewhere, wants for you too.


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