1. mimi

    mimi Registered User

    Dec 1, 2005
    8
    Birmingham
    Hello - this is my first message. My mom has just gone into a care home. I had little choice about which home - as the circumstances overtook and overwhelmed me. I have been caring for her for 6years with alzheimers (whilst working full time)
    in the last year - she has had home helps come in to give food. I was so busy trying to fetch and carry and look after her house and her etc.. i didnt realize she was deteriorating so much. It was gradual but I didnt see it in a way. One day the home help said "you mom has gone off her legs, it took me an hour to get her upstairs - can you come over" When i got there - mom was on her own and had fallen upstairs and was taking rubbish (she may have had a t.i.a?) The paramedics were called, etc... and she ended up in hospital. She was dehydrated - but nothing much else transpired. I blurted out about not being able to cope - and now, 7 weeks later she has been put in a local residential home. (It isn't EMI)
    The hospital social worker advised this; but wasnt much else use really (what are they for?) It was where there was a place; its a bit shabby, and i feel guilty. The staff seem kind. It's all been a bit of a rollercoaster ride - and I dont feel in control at all. I visited another home - but it was a shared room ( at least this home has single rooms) Mom has been there since Wednesday - it is now Saturday. She is on a 4week trial. ( i am kidding myself it's just 4 weeks...) I looked at the CSCI report - it was average. I am not sure what to say to mom - do other people lie a bit? She doesnt remember being in hospital at all. I am saying - "you have to stay here until you get stronger" Some days she is more on the ball - others she is not.
    I don't really know what she knows or doesn't now - i get confused with memory and understanding - with alzheimer's...falling into trap of treating her as if she is stupid not forgetful! I feel tired, guilty, and emotional.What can you do?Any ideas or help or support please.
     
  2. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    #2 Mjaqmac, Dec 3, 2005
    Last edited: Dec 3, 2005
    Dear Mimi

    Welcome to TP.

    You sound sad and exhausted. You have done a fantastic job in caring or your mum for 6 years and holding down a full time job. Give yourself a pat on the back for that. That is no easy task.

    Things have progressed as they always do with this disease and there comes a time when a person has given their all, as you have, and their loved one needs more care by more people. It's a terrible time when someone goes into a home, of course it is. But you must not feel guilty for this. Easier said! You have been a very loving a devoted daughter and will continue to be.

    Don't worry if the home is a bit shabby. It's the staff that matter. Someone once told me it's more often not the best looking places that are the best as they concentrate more on the happiness and wellbeing of the residents and not the decor.

    It will be tough for you adjusting to your mum being there, but she still has your support and love and as long as she has that she is a lucky woman.

    Share you're problems and fears here. There will always be a shoulder to cry on.

    Thinking of you at this hard time and wishing you strength to continue on this hard journey.

    PS Yes Mimi we have all told white lies to our loved ones with dementia, it's often the kindest way. Don't feel bad you are doing it for her own good. Things will settle down. Try to take a rest now while someone else is in charge.
     
  3. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Where's the <<<HUG>>> icon when you need it

    Hi Mimi, and welcome

    Sweetheart, you sound absolutely exhausted and emotionally wrung out, and no wonder at it. You have done a terrific job of caring for your Mum for so long and you have nothing to reproach yourself for. You have done your absolute best, and that's all anyone can do.

    This awful disease takes no notice of how much we love our AD-sufferer, and just continues relentlessly. Even if you were Superwoman, you couldn't turn the clock back. It may be that your Mum will rally a bit, but as you have noted yourself, it tends to be a case of good days & not so good days, with no particular logic as to what may have happened that day.

    If Mum is now unsteady on her feet, she really is in the best place for the moment at least. Accept that fact, and use this time to look after yourself a bit, and regain your own health & strength. IF she is able to come home again, you'll be better able to cope for a while longer. You might have to think about changing the house around to give her a bedroom downstairs if possible (but if the loo is upstairs that won't answer all the dangers)

    If she can't come home again, you may have to tell a few white lies to help her settle. She has been there less than a week, and it's not untrue to say that she's there until she gets stronger. Perhaps the relatives of other residents whom you may meet there might be able to give you a few pointers on what worked (or didn't work) for them, but of course every person is different.

    She may feel better about being in the home in a weeks time; that depends much more on the quality of care than the decor. Try to get to know a few of the staff, and ask them how they think she is. It's not unexpected for her to be restless when you visit (as seeing you reminds you that she's not living with you at the moment) but apparently quite happy for most of the rest of the time.

    Come again to keep us posted; there are many contributors here in your position (although I'm not one of them, yet) and lots of sympathy & useful suggestions forthcoming. People here really DO understand, having learned the hard way.

    Best wishes
     
  4. Dee

    Dee Registered User

    Mar 23, 2005
    41
    Shropshire
    Hi Mimi

    Reading your post reminded me so much of where I was exactly four months ago, it brought a lump to my throat. I was in a similar position and my mum ended up in a care home where there was a bed. It was fine but not what I wanted for her. I had given the situation a bit of thought previously as I thought that we might be in the "residential home" situation at some point but when it happened it was very sudden as my mum went off her legs too.

    I approached the home that I had identified before as being "the one" and explained the situation. They were great, visited her and assessed her and (I accept this is luck) a room came up just at the 4 week point as she was coming to the end of the respite period. She moved to the other care home and has never looked back although there are days when she is not good but others where I wonder if I have done the right thing putting her into that setting!

    However, she is safe and (relatively) happy and looks fit and well. She is beginning to be more mobile again. I have her home for days out which is great.

    Stick with it Mimi - you have nothing to be guilty about - you are doing your best and sound as though you have done so much for her already. Find a home you like and get her in there although once she has settled you may find that she is already in the best place. If you get her home again - then great. I so identify with how you feel and my heart goes out to you - August this year was the worst four weeks of my life - but I do feel that all the pain, guilt and heartache was worth it as I think she would have become more and more ill at home. Hope it helps,

    Dee
     
  5. mimi

    mimi Registered User

    Dec 1, 2005
    8
    Birmingham
    thank you

    Thank you to all who replied - i am going to see mom tonight. I dont think she will come home (as she lived alone - i just ran back and forth to see to her etc... i moved out only 4 years ago - just as it all started. I thought she was being strange because of that, didnt know it was start of AD) I got married 3 months ago- managed to get mom up and dressed and to the wedding...so at least she was there ( in body not spirit) It's all guilt....worry and tears. She has already been wandering in the home at night - up and down corridors, and horror - she has wet the bed (never did this at home) The only bright spot is my new husband (who is brilliant and never moans about me and mom sitn...which has dominated all of our relationship so far) We will have mom over for xmas day dinner - and she can see her cat! (which i am now looking after!)
    It is so hard... Thanks
     
  6. Tressa

    Tressa Registered User

    May 18, 2004
    31
    N. Ireland
    Hi Mimi

    I feel like your story is a vision of what my life may be like a year from now. I too look after my mum and work full time, she is getting steadily worse and I am getting married next year and planning to move country. I have practically no support from my family and feel that residential care is inevitable. Really what I am trying to say is, you are not alone. We are only human and can only do our best especially in such a terrible terrible situation. AD is a cruel cruel disease that consumes your loved one which in turn consumes the carer(s).

    Hang in there and use TP, it has been a lifeline for me and the people are wonderful.

    Thinking of you

    Tressa.
     
  7. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Mimi, this must be so hard for you right now, just remember it is the illness to blame, not you, not your Mum. The wetting may settle once she gets to know her surroundings a bit. Try not to worry, she is being cared for 24/7, you have done your very best, she knows that and so do we! So, do what she would want you to do, lead a good life, be happy, and dont you dare let the guilt monster take any part in it! Lotsaluv, She. XX
     
  8. allylee

    allylee Registered User

    Feb 28, 2005
    180
    west mids
    Hi Mimi, I picked up on your concerns about the care home being shabby, please dont let this sway your opinion of the place. Five yrs ago I had to make the decision to take my nan from warden controlled accommodation into a care home because of AD. The home I chose was grand, beautiful decor, like a palace. Sadly the care was appalling. After complaining to social services the social worker tipped me off about a vacancy in another home nearby. MY first impressions were like you, that it was shabby.THe reason for this was that it was a REAL home. The residents there filled it with there own bits of furniture,to create familiarity.
    THe place was fantastic, the care second to none, and my nan spent her last yrs in an environment that was loving and caring. Im now nursing my mom with AD, I have no qualms that when I cant cope anylonger, and shes no longer safe to be at home, that the "shabby" home is going to be my choice yet again .
    Ally xx
     
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Residents at various stages of dementia can be very hard on the fabric of a care home, as well.

    There was one lovely Early Onset man [ex-Merchant Navy] at Jan's home - now passed on - who ripped every handrail off every wall. Not by being violent, but simply by standing be each one, holding on, and swaying back and forth, causing a loosening. He did the same with a cabinet full of china and trashed the lot!

    Homes cannot keep up decor on a daily basis in a home with such challenging people. Even Jan, poor dab, who has very little movement but great strength, has made her special *expensive* specialist chair look like a disaster zone, and her even more *expensive* heavy duty specialist bed has required the attention of the carpenter.

    Best thing to do is sit in a home for an hour or so, and watch how the residents behave, and are cared for by staff. Also talk to any families who visit; they will tell you what the place is like.
     
  10. mimi

    mimi Registered User

    Dec 1, 2005
    8
    Birmingham
    thanks and ideas needed

    Thanks to everyone who replied - regarding my concerns over "shabby" care home. I take on board everything you say. I think mom may not even notice some of it, and it's just my idea of her accomodation standards slipping (not that we lived in a palace) very hard - it's only been a week, and i am so tired and guilty.
    Can anyone tell me what they talk about to their AD sufferer when they visit? It's like the lights have gone off - and I dare not mention "home" or outside world - cos i am worried it will upset her. It'sad that I dont know even what to talk about to my mom - all of a sudden. Her world is so small now.
    Ideas on what to do when you visit? What to talk about? Etc... coping stategies.
    There are only so many bags of sweets you can take!
    Mimi
     
  11. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Bruce - "dab"???
     
  12. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    #12 Geraldine, Dec 8, 2005
    Last edited: Dec 8, 2005
    Hi there

    I used to try to go in over lunch or tea times so the visit had some sort of focus. But not easy if you work full time. I also used to go in with magazines and papers and would read bits out to Mum or just look at the pictures, she was a real Royalist so I would look for snippets about the Royal Family (actually when she was in hospital at the end I had just finished telling her that Charles and Camilla were to marry and she died a couple of minutes later - she obviously felt it really WAS time to go!). Mum's home also had a lot of nice pictures and I wuld spend time discussing these with her. But a lot of the time was spent in silence because she was tired or 'somewhere' else and I would make a real effort getting to know the staff and chatting with them when they had time I think this made a real difference to the way Mum was looked after as Bruce mentioned in another 'thread'. After an awful start I soon looked forward to going and now I miss going not just because I miss Mum but because I miss the chats I used to have with the staff as well. Thinking about sweets, in the end I had so many boxes stacked up for Mum from well wishes- she could only manage about one chocolate per visit - I could have started a chocolate shop!

    geraldine
     
  13. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Mimi,

    It is very difficult at first, especially when you're feeling "tired, guilty, and emotional" and no wonder when you've spent such a long time caring for your Mum at home.

    I hated the smell in my Dad's Home at first - it's not bad but just reminded me of school dinners. And, irrationally perhaps, I hated the chairs - very practically plastic-covered but blaring out the fact that Dad could start having accidents. I believe you're right when you say "I think mom may not even notice some of it", it's often us who can't stand to think of being in that environment when most of the residents seem to not even notice. And amazingly I have gotten used to all that now.

    With regard to visits - just because your Mum's in a Home you don't have to 'just talk' on your visit. When you feel a bit more comfortable there, you could try singing instead! The people in my Dad's Care Home are very used to the sight of Dad, Mum and myself, linking arms, strolling round the corridors and singing all the old songs. I think I'll still be singing to Dad even when (if) he's immobile (poor him :eek: )

    Playing patience or turning pages of a magazine is a way of passing some time, you may find your Mum will just watch. My Dad was never one for many words, so without having something to do when I visit, I'd feel a bit lost (and dare I say, bored too). So perhaps the activites are mainly for me, but there's a bonus when I get a reaction from Dad.

    "I don't really know what she knows or doesn't now" - try to go with the flow and follow her lead. I sometimes feel like we're just sitting around waiting for Dad to have one of his occasional memory flashes. For instance, yesterday we had a long-ish conversation with him about his brothers and sister - as each memory clicked into place, Mum and I suggested another and Dad would say "Oh yes, that's right" - wonderful stuff, but most of the time we just live in the present with him.

    These links are only loosely connected to your post but you may get some more ideas from them:

    http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=1395

    http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=2137

    Best wishes,
     
  14. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    520
    hi mimi ,when i visited my husband on the assesment ward ,i use to stay 4 or 5 hours at a time ,i would do his nails clean and file ,,that was something the staff seem to overlook , not that he would have sat nicely while they did try ,allso i would take him in the quite room ,and with staffs permission ,cut his toe nails ,he was not too keen ,but he liked me smoothing nice smelling foot cream on ,THIS WAS A COMFORT TO ME TOO as i felt i was still looking after him ,i use to play CDsand sing to him .If there is a garden you could walk round and comment on the flowers or shrubs ,and birds , not the weather at the moment but if wrapped up well ,this would give a bit of fresh air ,i noticed some of the ladys liked having their hair done ,?its all trial and error, good luck. ANGELA
     
  15. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    "dab"

    This was a word Jan used - she was from the Welsh valleys.

    From the Wenglish dictionary:
    Check out the dictionary for "Wenglish", the language of the valleys as used in "Talk Tidy": http://www.talktidy.com/xoops/html/modules/Talktidy/index.php/tt-d.html

    Check also the range of slang dictionaries around! http://www.peevish.co.uk/slang/links.htm

    I'm sure people often talked about me, in the context of Jan, when she was still well in terms of "Pooer dab, she do 'ave a lot to put up with 'im... " ;)
     
  16. patriciacolliso

    patriciacolliso Registered User

    Nov 23, 2005
    20
    london
    hello mimi. i have just had to have my husband put in a care home.just like you i did not have a choice of homes, but the social worker who i had did such a good job for me . my husband has AD and is double incontinence.i am disable myself with no other family, so i had no choice. anyway the home seems very nice . carers are nice enough. just got to see how things go.but i have been heartbroken about it crying on my own all the time. still early days. he has only been there eight days. so keep your up. love patricia
     
  17. patriciacolliso

    patriciacolliso Registered User

    Nov 23, 2005
    20
    london
    worried

    my husband john, has been in the care home a forthnight now. it seems ok so far.and he looks well. he has AD.but i am having another upset now. me and my husband have lived in our council flat for twenty five years. but it is in his name. yesterday i went to see the council about having the tennecy put in my name. they told me that it will have to go before a panel and i will have to wait to see if they will let me have it. i told them that i live near my doctors. very near my husbands care home . also my friends in my street. so i don,t want to move. does anyone know if they are right or wrong to do this to me .after all i have been through.
     
  18. Dee

    Dee Registered User

    Mar 23, 2005
    41
    Shropshire
    Hi Mimi

    When I visit mum we look at the paper, discuss what I have done during the day, look at the millions of clothing and other mail order catalogues that she used to like and just talk about trivia like we used to. She is very repetitive so I just answer the same questions over and over again. Recently we have done her Christmas cards and planned what we will do on Christmas Day (she cant remember so we do that every day).

    She gets very scared and agitated about not knowing what is happening so I did her some memory cards - one for each phase of the day - a general "this is what happens now" aidememoire. She has those by her chair all the time and refers to them when she gets frightened - if she remembers. The carers make sure she uses them and I know that they find them helpful. She also has her diary with her and I write in when I am coming every day so that she (and they) know whats happening.

    On the days she is not so good, I just let her talk about whatever she wants, have a good cry and get it out of her system. Those days the guilt is unbearable but as someone said on another thread - remember the reasons why you found her a care home. It does get easier for both of you. When I look back to August, my mum looks a different person. She has regained her continence which she lost for a short time and looks more like my mum.

    The care home she is in do a nice thing called "This is Your Life So Far". After a couple of months, they do a little tea party with whoever you want there and present the resident with a book of pictures and information that the family are asked to provide. Its a really nice idea and makes them feel very special. Mum was so bright that day - I could not believe it. They take a couple of pictures and they appear in the home newsletter the following month. Keep the faith Mimi - you are doing your best.
     
  19. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Patricia
    Dear god, these people leave me breathless!

    I suggest you call the Alzheimer's Help Line to seek advice on this. As a layman, I can't see how on earth, as a wife, you could not be able to stay at the house.

    If nothing else works, enlist the help of one of the tabloid newspapers, your MP, local papers, etc.
     
  20. mimi

    mimi Registered User

    Dec 1, 2005
    8
    Birmingham
    Thanks

    Thanks Dee - and everyone. It is very hard isn't it. Silly things make me cry. Mom
    seems to have "dulled" with the AD emotions are duller (at moment) I hope she makes the xmas lunch at local pub today - i can't go I am at work. I hope it get easier. I worry all the time - things like "what do they do with her when they wash her etc.." "are they checking her false teeth" It goes on and on... but when i am at the home I feel daft if i ask, as they all say she is doing ok. It is hard not to try and imagine next year, year after etc... and wonder how bad mom will be by then. Buy I know from this site that - you should take day by day. I hope to get mom to mine on xmas day for dinner. Fingers Crossed.
    I will have to sell the house ( i co -own it with her) It rankles a bit that. We still haven't heard from finances. Then the money will pay for her care until it runs down to a level where benefits kick in. Is that right? Dee - i hope the council thing with your flat/house is just a procedure - you could get your local councillor on your side. Ours was an ex-council house, Mom lived there for 50odd years. We bought it - a struggle to secure it for me in the future. Ha! Now I have got to sell it.
    **** isn't it.take care
     

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