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. jsmith

    jsmith Registered User

    Aug 20, 2010
    12
    Dear all

    I am a 26 year old man living in London, and have a mother aged 57 suffering from dementia.

    Her condition has been developing in the background for perhaps the last 5 years, although her symptoms only started to be taken seriously around 2 years ago. My father had an extra marital affair around this time, and subsequently left, which sent my mother into severe depression. What we now know is dementia was long misdiagnosed as severe psychological trauma (pseudo-dementia). Doctors found no signs of any organic problems on MRI scans, and the depression ended up to be a red herring.

    She has been attending a day centre for people with severe emotional problems for the last year. However, in May of this year, an MRI scan showed signs of a dementive condition and she was consequently referred to the National Centre for Neurology, where she was taken in as an inpatient. We're waiting on precise results.

    My younger brother and I are having ongoing difficulties managing care at home. We're being advised that we should consider full time residential care sooner rather than later.

    Facing this prospect is difficult because I am torn apart by divergent emotions. While health & safety is increasingly a concern, the psychological benefits of being at home are huge, in my mothers case. She realises that she will one day have to move out of family house she currently occupies (5 bedroom and far too big for just her) but at the same time can feels comfortable here.
    It does of course put huge strain on us, as she basically cannot be left alone for much longer than a couple of hours.

    However I'm massively concerned about the idea of putting her into a residential home with people 20 years her senior. Psychologically, she is not quite ready for it, although in terms of her care needs, she is.

    Are there any facilities in London that accommodate younger sufferers of dementia?

    Can anyone who may have had similar experiences offer any advice?

    What are the alternative solutions available, even in the medium term?

    Many apologies for the rambling unfocused post, but any help much appreciated.
     
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,208
    Female
    Dundee
    I'm so sorry I can't answer your questions. You have done the right thing to share your worries here. Someone will be along to help you. X
     
  3. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Dear jsmith,

    I am so sorry to read about your Mother. My husband was 56 when he was diagnoised with Alzheimers.

    To start off with finding Day Centres that accommadate the under 65's was so difficult.

    I joined the local A.S. Branch and became Secretary and researched every avenue I could.

    When I was told by the Consultant that Peter needed to go into E.M.I. Unit it was so hard. I thought at the time that my husband was not ready for E.M.I. Unit.

    How wrong was I. For 6 years Peter did not know my name nor that I was his wife, just the lovely lady who looked after him.

    I found about 5 minutes from me the Care Home that ticked all my boxes. As hard as it was Peter settled in. There was a Care Package set up when he was at home.

    I wish you all the best.

    Christine
     
  4. FifiMo

    FifiMo Registered User

    Feb 10, 2010
    4,716
    Wiltshire
    #4 FifiMo, Aug 20, 2010
    Last edited: Aug 20, 2010
    Hiya JSmith

    I think you will find in this day and age that there is so much emphasis put on keeping people in their own homes for as long as possible that when professionals tell you to start considering residential care that they have specific reasons for suggesting this. Have you explored with them whether there are any alternatives that might work for example a Warden Controlled apartment with support facilities such as central dining and laundry facilities provided? Does your mum have carers coming in at the moment? Could she stay in her home longer if this was arranged perhaps? The problem with these however are that they are only ever interim solutions.

    You might want to check out some of the threads on here, particularly one where Sue had the same misgivings about her husband going into care and about the age difference but now seems to have found that age is not necessarily the issue in making sure relatives are settled and getting the correct type of care. Perhaps someone will post the link for you so you can read her story.

    Another thing to consider whilst there is still time, if you haven't already done so, is to obtain a financial and welfare power of attorney (POA) from your mother. This will save you significant problems moving forward particularly if there are things like property involved etc and, as your mum is young, she may need care for a considerable amount of time.

    I wish you well in finding the right solution for your mum and I'm sure others will be along to offer suggestions and support also.

    Fiona
     
  5. sussexsue

    sussexsue Registered User

    Jun 10, 2009
    1,528
    West Sussex
    What a dilemma for you.

    All I can say is that I too am 57 (fortunately without dementia but look after my mother who does have it). I have 3 children aged 24, 26 and 28. Nothing would fill me with horror more than the thought of them looking after me at their ages if I had dementia. We are a very close family, but I want them to be enjoying and establishing their own lives in the same way that I did when I was in my 20s.

    I really hope you can find somewhere that care for your mum.

    Sue
     
  6. miss cool

    miss cool Registered User

    Jul 20, 2010
    619
    taunton
    HI i am of simeler age and finding some ware of our age to go to is hard .but after going to places that SS recomended was so not for the younger person, real rubish. i found a privet day center witch SS said would be of no use to me also expencive. rubish it was the best place i have been to, yes ther ars some older people ther but also my age, we all get on realy good. so look around use your judgment, you now your mum more than enyone. i have 2 good days a week, hope this helps you. love Miss Cool
     
  7. piedwarbler

    piedwarbler Registered User

    Aug 3, 2010
    7,188
    South Ribble
    I have sent you a PM which I hope may be of some help

    pied x
     
  8. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    1,881
    Nr Mold
    You and your brother may like to contact the Admiral Nurse in your area for help and advice. They are there for you.
     
  9. jsmith

    jsmith Registered User

    Aug 20, 2010
    12
    Thankyou for the replies.

    We have 21 hours a week of support payment from the local authority and very very good and kind hearted lady that comes and looks after my mother for a few hours each day.

    We also pay a private company who send a carer in the mornings, who stays for around half an hour to make sure she's up out of bed and gets into the shower OK.

    She has been attending a day centre for people with emotional / pychological trauma, but the hospital need to move her out of there immediately (as now we know that it is dementia causing the problems).

    The hospital have asked her to become an inpatient in a ward on the hospital site, so they can assess her day-to-day needs and make some kind of report at the end, and advise options. I went and checked out this ward and thought it was fairly grim. I'm going to put her in there and see how it goes, but will pull her out if it's distressing...
    In their opinion we should be considering residential care immediately after.

    A warden controlled "extra care" situation is something that friends have recommended but I'm not sure that they will be able to sufficiently care for mum, who now needs help dressing/undressing, basic hygiene help, very easily confused, anxiety problems, trouble for example sitting correctly in a chair, etc. Looking to the future, her cognitive problems are inevitably only going to become worse, and I'd be concerned.

    But I guess I will be advised on this in due course.

    The other basic problem is that she is living in the family home, which is too big and definitely not tenable in the long term anyway.

    So I guess what I'm saying is
    - We need to sell the house at some point in next couple of years anyway
    - She currently has no day centre option (and the regular dementia day care will most likely be unsuitable)
    - There are growing social and health needs (health&safety, dignity, basic hygiene, etc etc)
    - Care and decision making is basically in the hands of two sons in their twenties trying to establish their own lives at the same time...

    Anyway apologies again I've rambled on. Thanks in advance for all advice.
     
  10. almaly

    almaly Registered User

    Aug 24, 2010
    1
    Cambridgehsire, UK
    Reply

    I have also sent you a private reply which I hope might help in some way...
     
  11. griff

    griff Registered User

    Mar 17, 2010
    74
    north london
    Hi

    my mum was diagnosed with alzheimers and I moved her into a care home in London to be nearer to me (previously lived in derbyshire ) mum is 71 , but a very young 71 and I have experienced the problems you are talking about at mums care home.
    All the other residents are elderly and not mobile and mum felt that everyone there were too old.
    The only way I could get round it was to employ a carer to come in a couple of days a week to take mum out shopping , for a coffee etc and then every timeI visit make sure I took mum out rather than leave her staying in the home.
    mum also needs the care but is in complete denial about her condition so it has been very hard.
    I visited so many homes prior to mum coming down and asked the same question as you but in my search I was not able to find a home that catered for younger or young minded people.
    Hope you get better luck x
     
  12. jsmith

    jsmith Registered User

    Aug 20, 2010
    12
    Griff, thank you very much for your reply. It's really helpful to hear of other people who have experienced similar problems, even if the exact situation is somewhat different. I am just a bit horrified at the thought of mum being in the environment I've seen in some care homes - elderly people sitting comatose in chairs in a TV lounge, or people with more developed mental problems having nonsense conversations at each other, etc. I do accept that my mother will deteriorate over time but right now its just not going work. I have found one place though, that I will consider for the future, but it is unfortunately in essex and around 1.5 hour drive...

    Almaly thank you so much for the private message I will reply now.
     
  13. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Hi,

    As I don't live in the UK I can't advise you on suitable homes, but as the daughter of a man who has had dementia for 12 years now (diagnosed at 54), and who did live in a care home for about 4 of those years two things came to mind when reading your posts.

    1. Dad said to us in early stages 'You will know when you need to put me in a home'. We found that very ambiguous and frustrating for many years, but it was true, there most times comes a stage when there is no other option, and you do know when its time, maybe you are at or nearing that time now. However the fact that you still felt your mother wasn't psychologically ready to go into a home, may delay your decision a bit, and if you are still coping maybe you can wait a bit longer.

    Don't delay because of guilt though if you aren't coping its time. The only reason I say maybe you might delay for a bit is because I know by the time Dad went into the home, he really didn't seem perturbed at all by it, his dementia had got to the stage where he was no longer so emotionally connected to people, so being in a strange place with strange old people didn't seem to bother him either. In fact he seemed to like the quietness of the home, where there was less distractions and noise. But every case of dementia is different, so don't go waiting for this stage to come along, certain that it will, I am just saying that in Dad's dementia, the dementia took care of our concerns about how he would cope.

    2. You said in one of your posts, you might try a home and if its not suitable you'd pull your mum back out. Now many will point out that it can be very tough/distressing for a person with dementia to have their routines changed, and perhaps you shouldn't do that. BUT, I think it is very important to always remember that you can pull a person back out of care home if it is unsuitable. As I said above, Dad was in a care home for about 4 years, but 3 years ago, when we were no longer happy with the care that they were providing, we took Dad back out of the home and haven't looked back as his care became easier once we had had time to come to terms with the disease, and to miss him.

    So thats just my family's story, and as we still have a Mum to care for our Dad, it has been that much easier for us. One other thing I would say is that I think our parents wouldn't want us to give up our lives for them, give some time yes, try to bring them happiness yes, but they don't want us to get to 50 and find our own lives have also disappeared because of this disease.

    Don't know if I have been of any help. But best wishes, in whatever decision you make...remember you can always undecide later down the track.

    Take care,
     
  14. HandM

    HandM Registered User

    Sep 11, 2010
    1
    Hi
    My mum was diagnosed with early onset at 57 also with frontal lobal. I am a little older than yourself but I know the choices me and my brother had to make were the most difficult of our lives.
    Mum lived at home on her own as me and brother have family of our own. At first we didn't even notice what was happening it wasn't until one of neighbours told us she would wonder on the streets in early ours of the morning.
    We took mum to hospital and after several months was told of the diagnosise.
    We were offered 2 choices mum being looked afrer at home and then the care home option.
    I decided to see how mum copied at home and spent the weekend with her to see how she went about her chores at home. It became apparent really quickly that she couldn't cope. She would leave the gas on stuggle to make tea and all becoming to much.
    We decided to find a care home which I have to say was the most disturbing thing about all this,nothing quite gets you prepared for when you walk from them doors. Me and my brother soon worked out that most care homes look great until you ask to see the dementia wards. they were always looked down units on the top floor or basements, prisioners are looked after better.
    As a result we stopped looking for care homes as they cater for elderly and focussed our search on Dementia only homes, we found a great place for mum now in Epping. The staff are fantastic and are there to stimulate and entertain.
     
  15. Cezar

    Cezar Registered User

    Oct 29, 2008
    3
    London
    Hi Jsmith,

    I'm pretty much in the same situation as you. I've just turned 25, live at home with my younger sister (23), my dad moved away after having affairs etc. My mum who is 57 has been diagnosed with demantia for the last 5 or so years.

    She's at the stage where we do everything for her, i.e. brush her teeth, feed her, wash her. She doesn't really interact in conversation pretty much every day is such an exhausting struggle. A lot of the time I wish I never wake up.

    We dont have a lot of money, very working class and being a recent graduate I only earn a modest income with which I support the household. Its pretty much living pay cheque to pay cheque. I'm sure I should be entitled to some type of benefit but I'm so mentally exhausted from work and looking after mum I never get round to looking at into it.

    Fortunately where I live in west London there is a special day care centre which my mother is entitled to go to Mon - Fri. We also have a carer that come in the mornings and evenings to help get mum ready.

    Don't really know where I'm going with this rant, but I'd thought I'd let you know that you aren't alone. I use to feel like I was the only young carer, none of my friends I could relate with, I would be so envious when they have conversations with their mums my conversations with mum are only in my memories...............

    Take care mate, let me know how you get on
     
  16. MrsP

    MrsP Registered User

    Mar 19, 2005
    115
    Hey Jsmith & Cezar - I was 25 when Dad was diagnosed aged 51. He left his wife as she couldn't cope with his diagnosis and became verbally abusive towards him. He managed to live independently with care for a short time but eventually had to go into residential care when he was 53, and then into nursing care 2 years ago. The first time I visited him in the residential home I was so sad as he didn't belong there, but he was safe whereas he wasn't living in his flat. He eventually became very distressed as his dementia progressed and would wander constantly and say 'I don't want to be here'. Now he can't talk or walk at all, and the comment about conversations being a distant memory hit me like a train, as I know precisely what you mean. What I wouldn't give to answer the phone and have Dad on the other end..............
    Finding a good home is never easy, and even more difficult at such a young age, but the residential home applied for a separate licence to be able to take Dad- not sure how difficult it was for them but they did it very quickly as dad deteriorated and needed care within a matter of 1-2 days. Hard though it is, you have a life to live as well, and you don't need to feel guilty about it. Cezar - you sound at breaking point, take the time to find help. Trust me, I know time is scarce (I'm a wife and mum with 2 children and a very demanding career). I send you both my regards, Kate xx
     
  17. Resigned

    Resigned Registered User

    Feb 23, 2010
    223
    Wiltshire
    Hi Jsmith

    My mother is a lot older than yours and moved permanently into a care home just over 6 months ago.

    Like you we didn't want mother to go into a home, we felt she wasn't that bad but actually, she was. I can see now that she was actually very afraid of being in her house, but tried to cover it all up when we visited. We had live in carers for 6 months but that didn't really stop the fear which got worse.

    Like everyone we got to the point where permanent care was the only option. She couldn't cope alone and she couldn't cope with carers.

    Amazingly, she was a lot less agitated once she got to the home. She didn't settle very quickly but she was less desperate, much calmer than previously. I think to a certain extent she gave up trying to appear 'normal' to us and was more relaxed as a result.

    I suppose what I'm trying to say is that your mother may well feel safer and reassured by the presence of others if she went into a home so it may not be the worst thing you can imagine.

    I hope that you will find somewhere suitable for her. I remember seeing posts from others in your situation and I'm sure I read that they'd found there are places for younger people with dementia.

    I wish you luck with it all, its certainly a steep learning curve.

    R
     
  18. jsmith

    jsmith Registered User

    Aug 20, 2010
    12
    Thanks to all for the further thoughtful comments - it has really helped.

    We're now moving towards a date after xmas where we will move mum into care. Currently sorting finances, selling the house, and attempting to gently broach the topic with mum. At this point we're just saying to her that it is necessary to sell the house, due to finances and the size of the place...and hoping that will lead more smoothly into her coming to grips with the fact that she will be moving in any case. I think we'll have to then leave it until just a few weeks before admission before telling her exactly where it is we are thinking of, and of course angle it so that she doesn't feel she is being admitted to an "old people's home" as I expect she will put it. We've found a place we're all confident in and now just have to go through with it, scary as it is.

    Cezar, I feel you. I've found that mum has missed out on several benefits she should have been entitled to, but hasn't received because I've just not kept on top of neccesary paperwork. I feel bad about it, and I will try and claim for some of it to be backdated, but it is just what happens when you have so many day-to-day responsibilities on top of your own life.

    It's going to be a really ****ty few months ahead, that is for sure. I'm dreading the prospect of her arriving and asking us why she is been moved into a home with these people with problems, why there are nurses, etc...as we've made the decision (I think I posted on the subject here) not to tell her about her dementia. She's also going to have to give up the dog (which lives at the house right now, and is effectively taken care of by sons and carers). That'll be a huge psychological blow...that dog has been one of her sole comforts in this last 2 years. It's going to destroy her....

    In any case, we're reaching the point now where it has become clear we have no alternative, so we must press on with the process regardless of how distressing things may get. I hope it is less painful than I expect, although I somehow doubt it will be.

    All the best
    J
     
  19. hongkongsandy

    hongkongsandy Registered User

    Mar 3, 2009
    123
    uk
    alternative thought

    Hi Jsmith, your thread touched a cord with me - what a tough position to be in. I think the actions you are taking sound good, its what i would probably do in your position but there are maybe other things you could consider.

    i have been reading this book a lot and am really impressed with it
    http://www.amazon.co.uk/Alzheimers-...=sr_1_1?ie=UTF8&s=books&qid=1290771778&sr=8-1
    A lot of the stuff in there has been really helpful to me. I am not in the same position as you as not looking at homes yet but the dilema of balancing health and safety versus the benefits of home enviroment are something that do prey on my mind for the future. Anyway the book gives some examples of people that have succesfully followed some alternative strategies for providing care (one person that provided accomodation to a vietnamese family in exchange for helping care for thier mother and another that provided lodging to some chinese students who each provided one day of care).

    Its pretty 'out there' i'll admit but there maybe alternatives if you want to think outside of the box. If your mum has a large house in LDN there may be other things you can consider.

    (have to say i have no idea and the book doesn't mention how you actually go about finding a vietnamese family that want to live with an AD suffer...;)
     
  20. jsmith

    jsmith Registered User

    Aug 20, 2010
    12
    Hi hongkongsandy ,

    Thanks for the note. Looks like an interesting book and I do find information which is drawn from experience to be the best. I just found it is available on google books, which might help some others out there too :

    http://books.google.co.uk/books?id=...&resnum=1&ved=0CDQQ6AEwAA#v=onepage&q&f=false

    I did consider all kinds of alternative options, but as the house is half owned by my father, we've no choice but to sell it (my mother to receive half of it's value) .

    I guess though, we could change our minds if things went very badly after admission. We'll just have to play it by ear. I'm sure a lot of people find these kind of unconventional arrangements to be very helpful. In my case, the lady who was cleaned the house once a week, turned into my mums close friend and daily care worker. We pay her through direct payments each month and she has been a life saver.
     

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