1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

For anyone having to decide to put relative in care home - my story 9 months on.

Discussion in 'I care for a person with dementia' started by Kittyann, Mar 8, 2016.

  1. Kittyann

    Kittyann Registered User

    Jun 19, 2013
    53
    #1 Kittyann, Mar 8, 2016
    Last edited: Mar 8, 2016
    Having been the recipient of so much supportive and helpful advice from the members of this forum during the years I was looking after Mum at home, I think it's time I gave something back.

    So I hope my account of making the decision to put Mum in a care home and what's happened since might be of some help to anybody here who is now struggling with taking that next step.

    First let me say that I never wanted to put Mum in a home and when I say I made the decision to do so I didn't really. It was essentially made for me by the Consultant in the hospital who told me that if Mum survived her latest downturn, I simply would not be able to look after her at home anymore as she needed too much support for one person, even with the help of carers, to provide.

    Well she did survive and I had to admit to myself that the Consultant was right and set about finding her a suitable home. I looked at several but one really seemed right. It wasn't the most modern but it had a real feeling of care and happiness in it. I was very fortunate to get her in there and I can now, with the benefit of hindsight, say it was the best decision I have taken since this whole horrible business of dementia began. I honestly thought I was doing the right thing for Mum by caring for her at home. But it is now clear to me that it comes to a point in the illness where home care is doing more harm than good.

    Obviously everyone's situation is different but in mine I now firmly believe that Mum's condition deteriorated so much in her last few months at home because she was depressed at the extent to which her world had shrunk. She essentially went from the bedroom to the sitting room and saw nobody but me, the odd visitor and the two carers who came for an hour in the morning and evening. She stopped eating and wouldn't drink enough and generally deteriorated to the point that she needed to be hospitalised. Nothing I tried made any difference. This situation continued in the hospital where they mostly kept her alive on fluids for six weeks.

    The day she left hospital en route to the Home neither myself or the Drs were sure she would survive. Going home that night and leaving her lying in the bed in the Home and realising she would never be coming back to the house I had looked after her in for years was the worst day of my life. I remember feeling like I'd buried her alive and I howled crying for hours and wanted to rush back to the home and take her out.

    Thankfully sense prevailed and, here's the wonderful thing, from the day she entered the Home she began to eat again and take an interest in things. The secret is, I firmly believe, the stimulation. She is surrounded by people and activities and is never at a loss for attention. The carers are wonderful with interacting with her at her level and she adores them. I visit her every day and while it's not perfect and some days she is agitated or upset they are few and far between. I honestly feel she is as happy as it is possible to be in her situation and has access to instant medical care which has proved invaluable since she is prone to UTI's and the sooner they're spotted the better. Plus she has put on nearly two stone in weight!

    Bottom line is I truly believe that if I hadn't taken this route Mum would not be alive today and would have missed the opportunity to end her days in relative happiness rather than being housebound with little company or stimulation.

    I really thought putting her in a home would be the worst thing ever. Turns out it was the best. Hope this was of some help to anybody faced with the same dilemma.
     
  2. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,963
    North East England
    This is the best one could have wished for and I am so glad that you have shared it here.
    I hope that you and your Mum enjoy much more special time together. Love Maureen.x
     
  3. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    Hi kittyann :)

    I haven't been posting much lately, but I feel I must second your post. I don't think my mum was quite as ill as yours ( or maybe our consultant simply took a different view), but apart from that, I can identify with every word you write.

    I too thought that 'putting mum in a home' was the worst thing I could do, felt horribly guilty, and even on occasion put my own health problems down to 'punishment' for what I'd done....

    Yet, just over six months later, mum is happy in her 'flat' ( her room), chats to other residents, eats in the dining room, has put on weight, takes part in activities....In short, where she was depressed, she is now content, where she was lonely, she has company....and so on as you say.

    I'm sorry, this is not very articulate. But thanks for posting as you have....and my mum is further evidence that care homes can work! :D

    Thanks again.

    Lindy xx
     
  4. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,593
    Yorkshire
    Thank you so much for posting such a positive report.

    My mum and MIL both thrived after they went into a care home. I have often said on TP that so-called 'independence' is often anything but; in many cases it means loneliness, insecurity and anxiety. Anyone who saw the BBC programme 'Protecting our Parents' in 2014 would be hard-pressed to disagree; it's such a shame it's not freely available on YouTube.
     
  5. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Thank you very much for your honest post, Kittyann.

    I am another person here on TP with a mother (Alzheimer's) in a care home, and like you, that decision was taken out of my hands by the hospital, when my mother was sectioned last year after a crisis.

    I wish I had known that a care home could be a good thing. My mother has done very well in her care home, much better than she was in her home and much better than she would be, if she were still at home. I honestly think she would be dead, or at least very ill, if she weren't in a care home.

    It would have been a huge help to me, during those very dark days, if someone had said to me: this could work out. A care home could be okay. She will be well looked after there. So I very much applaud you saying it. Of course every family must make whatever decision is best, at the time, but I think it can be very difficult to ever think about a care home or other residential care situation, objectively.

    Many thanks.
     
  6. canary

    canary Registered User

    Feb 25, 2014
    9,890
    Female
    South coast
    Thank you for posting that kittyanne :)

    Mum is another one who has thrived in her CH. Like yours, mums is not the most modern looking (in fact it looks a bit scruffy), but it has a lovely homely atmosphere and the carers are kind and nothing fazes them. She too enjoys the company - there is always something going on - and she has made a couple of good friends. She does not have to worry about cooking, cleaning, shopping or the laundry so her anxiety and paranoia have reduced considerably.

    Mum had tried to make me promise that I would never put her in a home, but instead I promised to always do my very best for her and I think I have kept that promise.
     
  7. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,567
    Female
    Auckland...... New Zealand
    KittyAnn thank you for your positive post :)
    I am at the stage where, I think my Mum would benefit from being in care, rather than still living at home with Dad, and that is even with us there for support. They live in their own house behind ours.

    Mum was diagnosed with AD in 2013. Dad with MCI in 2014.
    There is so much that Mum cannot do anymore, that despite going to activity groups 3 days a week, she spends most of her time pottering about between lounge, kitchen and bedroom, or just sitting at the table.
    The only thing that keeps her remotely occupied is doing the laundry and hanging it out, and even then she is having difficulty using the washing machine, saying it is broken.

    Dad is content to watch sport, documentaries and comedy shows on TV morning to night. He has always been this way.
    Mum was always the social butterfly, going out, catching the bus anywhere and hated staying in.
    Mum hasn't caught a bus in over 2 years.

    Now she is at a stage where every day she thinks she has her Alz Activity groups, and gets up a dressed. When its a weekend she wants me to take her out every day, but I also have my husbnad and children to consider.

    I'm thinking a move into care would see Mum more active and occupied, and her quality of life would be better. Mum has recently developed incontinence, and had had two UTI's since January. Dad is not equipped to deal with it, and Mum doesn't Dad knowing her business :rolleyes: but then Mums self help and management is by the wayside plus she doesn't drink enough and I am not there 24/7 to supervise.
     
  8. Nellybell

    Nellybell Registered User

    Feb 5, 2016
    28
    Thank you all for these posts. I have just had to put my dad (VD) into a CH after a month stay in hospital following a fall and breaking his leg. I lie awake at night feeling guilty about it as when I visit him he asks when he is going home. The carers say that he is settling well and doesn't mention home when I am not there. I know I couldn't cope with him at home anymore as he is a night time wanderer, short term memory completely shot, very very delusional with occasional hallucinations and restricted mobility, although he doesn't think so! I hope I can post something similar to all of you in the coming months.
     
  9. canary

    canary Registered User

    Feb 25, 2014
    9,890
    Female
    South coast
    This asking to go home is very common, especially in the early stages. Often what they are actually asking for is to go back to a time and/or place where they didnt feel confused. Mum kept asking to go home in the initial stages of being in her CH, but she very seldom does now. If your dad is settling and doesnt ask to go home when you are not there then dont feel guilty and just try and distract him. The CH mum is in suggested that I didnt visit for a week or so to try and break the cycle of mum seeing me and this triggering her wanting to go home. I must say that it did help.
     
  10. blueboy

    blueboy Registered User

    Feb 21, 2015
    126
    Thank you so much for this - I am at the stage of looking at care homes for Mum and feeling really bad about it. Part of me does think though that she too would be so much better with company and activity going on around her as she only sees me and the carers, never goes out, and sleeps most of the time. She is adamant that she doesn't want to go into care, of course, hence I feel that I am letting her down. Your post has made me think otherwise - thank you!!!
     
  11. brambles

    brambles Registered User

    Sep 22, 2014
    228
    Female
    NW England
    Thankyou from me to.

    My mum has already said she would rather die than go in a care home, but I know the time will probably come when it is inevitable and these posts have helped ease my mind.

    brambles x
     
  12. Kittyann

    Kittyann Registered User

    Jun 19, 2013
    53
    #12 Kittyann, Mar 8, 2016
    Last edited: Mar 8, 2016
    Thanks for your responses. It's good to know posting my experience has been helpful. I hope that those of you who have made or are about to make the decision to move a relative to a care home will find it works out well too.

    I just wanted to answer a few more issues touched on here.

    1. I promised my Mum I would never put her in a care home.

    So did I! And when the time came I felt wretched even though I was fortunate that Mum's dementia was so far advanced that she didn't really realise she was in a care home. She did know she was somewhere different though and almost immediately decided she liked it! I've got to know other people with relatives in the same home (yet another advantage of the care home option is that relatives get to meet and share experiences and support each other) and the adjustment time does vary depending on he level of cognition the person has. But all of them have settled in and really like being there.

    I think that many elderly people's fear of care homes is based on memories of how they used to be rather than how they are now. Also the fear of loss of independence. But people who are in the advanced stages of mental or physical decline really don't have much in the way of independence anyway and actually find they have more ability live a more "independent" life in a care home than they do in their own home.

    2. My relative says they want to go home.

    This happens from time to time but I think it's worth teasing out what they mean. Most people with dementia tend to think of home as being somewhere in the past as opposed to the place they left to enter the care home. My Mum rarely mentioned home but on the few occasions she has I have asked her "where is home" and she has answered with the name of the place she lived as a child. And then she tends to forget all about it and turns her interest to something else. Also the carers are well used to dealing with this and are very adept at finding ways to distract the persons focus onto something else.

    3. Picking a care home

    Again from my experience I would recommend atmosphere over appearance every time. In searching for somewhere for Mum I saw one place that was wonderfully sleek and modern with public areas and rooms resembling a high quality hotel. I couldn't fault it on the surface but somehow it just felt too cold and clinical. It was not a "home"

    The place my Mum is in is spotlessly clean but the decor in the bedrooms is a bit old fashioned - which, when you think about it is probably more appealing to elderly people. They want somewhere that feels like a familiar bedroom not a hotel room. Also the public areas in her home are designed to feel homely. There is, for example, a cafe staffed by volunteers where for ridiculously low prices residents and their visitors can get tea or coffee or cold drinks and lovely cakes made on the premises. It just adds to the interaction between residents and relatives in a really relaxed way.

    I would recommend, therefore, somewhere that feels homely and happy. You will know it when you see it. The minute I walked into my Mum's place I got the feeling it was right.

    Also try if you can to talk to some relatives of residents to see what they think of the place.
     
  13. Otiruz

    Otiruz Registered User

    Nov 28, 2015
    255
    Kent
    What a relief to read your post - today I moved my Mum into a care home - that most dreaded and degrading of places for people who can no longer look after themselves. The place where people sit and dribble or stare into an empty space or wander meaningless until they are redirected... I don't think I have ever felt so utterly despondent and failing completely as a daughter. And yet, when I got to the home shortly after Mum had been transferred from hospital, there she was, sitting in the lounge talking to two other ladies. My heart nearly burst with relief. I sat with her in the dining room whilst she had her dinner - there were four other residents tucking into potato and leek soup, followed by cheese and potato pie with a scrummy home-cooked fruit cake for pudding and a 'proper' cup of tea. Likewise to previous posts, I too investigated homes which provided a surround-sound cinema, folded napkins into the shape of a rose on Monday, swan on Tuesday etc., etc., extensive wine list et al, but all the fancy trimmings are lost on someone who just wants to be asked if they would like help putting their cardigan on when they are feeling chilly. The home I chose possibly could do with a coat of paint outside, but everyone seems friendly, helpful and above all caring - isn't that what a care-home is supposed to provide? I have left my Mum this evening, her first night in the home and I am as frightened and worried as she is. The difference is, I know she is in a safe place BUT I can't help but think that she doesn't know this. What an awful lonely sad journey for everyone - but reading other posts certainly helps.
     
  14. jknight

    jknight Registered User

    Oct 23, 2015
    786
    Hampshire
    Thank you KittyAnn!
    We are not at the care home stage yet but reading your posts makes me feel more hopeful for when we do reach that stage
    J x
     
  15. josephinewilson

    josephinewilson Registered User

    May 19, 2015
    112
    Lancashire
    Thankyou SO much for this, which has encouraged me too. I came to the forum again after an evening discussing with O/H about putting my mother in a care home (she has a place and it might be happening soon) He still thinks I should have her here because I work from home (it would drive me mad) or keep her in her current sheltered accommodation where she currently is causing problems with her (scantily clad) night wandering) and he's making me feel uncaring because I think she'd be better off, ultimately, in the nice care home she is visiting on Thursday. She also has said if I put her in a care home she would run away!
    But I'm trying to be really strong against these objections and do what I believe best for her. I have POA; it is my call and I am so glad to read your post and the comments.
     
  16. Holly73

    Holly73 Registered User

    Feb 1, 2016
    9
    Huge thanks to Kittyann and everyone else who has posted on this thread. My 91YO father is due to be discharged from hospital and into a nursing home on Monday. He thinks this is temporary until he is back on his feet but we have been told he should be getting 24hr care. The home sounds just as others have described, not the smartest we've seen, but the most homely and warm in atmosphere and the staff members we've met so far, manager, senior nurse and a care assistant, are all lovely, kindly people. I know dad thinks he wants to go home and insists he can look after himself but he can't and I know he was terribly lonely for all the hours he had to spend by himself and has barely eaten in weeks. The home is only a five minute drive from our house. I am optimistic, thanks to these encouraging posts.
     
  17. Mollygoose

    Mollygoose Registered User

    Dec 19, 2014
    52
    Lincolnshire
    Care home

    My mother had a fall last Wednesday so after hours at the hospital they decided to get her in a care home for restbite ! It was a nice care home and I still visited her twice a day ! Alas they said she was well enough to go back home ! Although she has stopped eating and drinking and has to be persuaded do eat and drink. But they needed the bed for a privet patient I said how to I get mam in to stay but it's all up to social service so back home we took her ! She has carers coming in 4times a day but I felt more at ease when she was in the care home
     
  18. Toddleo

    Toddleo Registered User

    Oct 7, 2015
    412
    I just wanted to thank everyone for posts like these - especially you Kittyann :).
    We are on the verge of the big decision, and this kind of thread is so very helpful. Many thanks
     

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