1. Expert Q&A: Living well as a carer - Weds 28 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 Wednesday 28 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.

When is it time for residential care?

Discussion in 'Middle - later stages of dementia' started by Lostmylunch, Aug 10, 2016.

  1. Lostmylunch

    Lostmylunch Registered User

    Aug 10, 2016
    Hello, my mother has fairly advanced dementia but lives on her own - she's been living alone since my parents got divorced 30 years ago. I live in another part of the country and only see her a few times a year. My brother lives nearer but has a busy job and travels a lot. She has a sister and a brother in the area who see her from time to time and a network of friends and neighbours who keep an eye on her. She gets help from carers to make sure she takes medication and my brother and recently arranged for someone to help her with cleaning and bathing.

    Some of her friends and neighbours are concerned that she is "getting worse, and worse" and that we need to "put her into care of some kind".

    My mum is fiercely independent and wants to stay in her home with her dog as long as possible. Her dementia mostly manifests itself as forgetting to turn up for appointments, confused memories and repeating herself. Sometimes she misplaces her purse and can be very anxious. This often results in repeated, distressed visits to neighbours, who then contact me or my brother.

    We've had visits from the GP, and she's been referred to an integrated neighbourhood team, but their views are that mum is able to manage most things by herself, is not in any danger, so she should stay at home, with additional support, for as long as possible. My mum herself is determined not to move into care and is very insistent about that when visited by health professionals.

    But my brother and I are getting increasing pressure from concerned friends and neighbours that we need to push the authorities to get her into care, because she can't manage by herself. They say they are the ones who see her day-in, day-out so see how bad she is. I've read a lot about other people living alone with dementia for as long as possible

    I'm wondering if others on this forum have dealt with similar issues? I am worried about my mum, especially when she gets confused or anxious about losing money, but I also respect her wish to want to stay independent and her ever present anxiety that "everyone is ganging up on her" to put her in a home.

    Do we try and push for something she doesn't want? Or should we just tell the neighbours not to worry and keep out of it?
  2. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Hello lostmylunch and welcome to Talking Point.

    In my experience people with dementia can hide the symptoms from friends and family for a long time, so if your mums neighbours are aware of a lot of problems then I think it likely that things have got quite bad. Mum was at that stage when she came and stayed with me for a week-end. I was shocked by her level of confusion (especially during the night) and by her evident lack of ability to do many things - eg she confused the liquid soap with moistourising cream and was unable to make herself a cup of tea. I felt like I hadnt known the half of it! Soon after she started walking out at night dressed only in her nighty and knocking on random neighbours doors at 2.00 am because she didnt know where she was. By this stage it was obvious to everyone (except social services) that she could not manage at home. Social Services asked her what help she needed and, surprise surprise, she didnt need any help at all - so SS crossed her off their book :eek:

    Could you possibly go and stay with her for several days to see for yourself how she is doing? Bear in mind that many people with dementia can put on a good show of normality for a few hours, which is maybe what the integrated neighbourhood team saw, but they cant maintain it and after a couple of days you will see the true picture.
  3. Hill Man

    Hill Man Registered User

    Apr 10, 2016
    Mid Wales
    Its probably worth while you and your brother deciding what you will do should your mum get worse. Are you on the same page as regarding where in the country care will be provided?, and of what type?, that sort of thing. Most people are quite reticent about giving advice to other people about care of their loved ones so I would take the fact that the neighbours have raised concerns as a warning sign. One of the worst aspects of dementia is that it robs people of any insight into just how much in need of help they are, so you may need to face the fact that your mum will never see the need even when its desperately needed

    All the best
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    Hi Lostmylunch
    a warm welcome from me too

    canary has said very much what I was thinking
    if the neighbours are worried and have spoken out, take that seriously - most of us put up with our neighbours and don't complain, so they are honestly concerned about your mum
    I'd go stay with her for a few days - and interfere as little as possible, just visit as you might have done 2 years ago and let her be 'mum', indeed ask her to do some things and see how she reacts - that way you'll get a good idea of how things are, rather than going in and treating her, taking a meal, doing some of the chores ... - at some point have a chat with the neighbours and tell them you want them to be brutally honest and give you details of what they've noticed; it will probably be hard to listen to, I'm afraid
    maybe she will he helped with a day care placement and more care visits
    maybe it is time to research and visit local care homes so that you are prepared
    do you have Powers of Attorney in place? - these will help in the future
    if your mum still has capacity, wants to stay at home and is resistant to support, it won't be as simple as the neighbours/friends think to make the move to full time care - but you and your brother knowing exactly what's going on will help you with decisions about your mum's care needs
    best wishes
  5. saucepan

    saucepan Registered User

    Jul 30, 2014
    My Dad also lived alone for many years and was always fiercely independant. He would always deny anything was wrong with him and do his best to carry on as normal. Unfortunately it was a few crises that turned the tables for us and for him.

    We initially got private carers in to visit 3 times a day, he wouldn't open the door to them. We then tried social services carers, again he wouldn't let them in. We ended up having to miss more and more work to go over and stay with him. He then started having sun downers and wandered off in the middle of the night as well as having night terrors.

    We found a suitable care home and fortunately a room became available very quickly. We took him there for a sing song one afternoon and the next day we had to trick him to go for lunch there whilst we moved things into his room and when his partner and member of staff showed him upstairs we were there to greet him and gradually left one by one. We were fully expecting him to totally kick off, as previously he had ranted about the fact that he was going to die at his house, and over his dead body would he move any where else.

    He settled in really well straight away, we were so lucky. I think the struggle of putting on an act to show he was alright had got too much for him and also I think he was most likely very scared being on his own. Once he realised he was safe and always a member of staff availalbe I think he could relax and settled.

    Good luck with your Mom. Previous people have suggested you might take your Mom to visit a care home for a regular activity, get her used to the place and she might take to it quite well, then moving her might be easier.
  6. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    #6 Chemmy, Aug 12, 2016
    Last edited: Aug 12, 2016
    This sounds just like my mum was. I agree, go and stay for a couple of days and observe rather than look after her. It came as a shock to me when I realised that Mum didn't know what to do with the tins of food in her cupboards any more and was existing on scones and jam, because that's all she could 'cook'. Stuff in the fridge was similarly untouched.

    I'd also make notes or take surreptitious photos of what's going on, as this might be useful when dealing with the professionals later on.
  7. cat64

    cat64 Registered User

    Sep 1, 2014
    Hello .......my mum lived on her own for 20 years and has vascular dementia.

    We had to move her into a home when we hit a crunch point last xmas [ hardly eating, losing so much weight. not managing money or cleaning the house...kitchen beyond chaos even with help!!!!] ...she too had had carers at home for several years. And I live in another city too , every time I visited she seemed worse.

    I visited 10 homes near me before I found one I liked.

    yes it feels horrific, yes I have been so stressed over the last 6 months, yes I NEVER wish to do it again...BUT and this is a BIG BUT she is now in her home which was a mega struggle to find but it was so the right time. Mum is now eating has put on weight and has a lovely room with a bathroom and has actually had several haircuts!..and I am gradually relaxing. I know she is safe and has people caring for her 24/7.

    I am now battling to clear and sell the house and go through mountains of her paperwork ...thank goodness for poa is all I can say!

    good luck with all your decisions .:)
  8. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    The suggestion of staying for a few days is a really good one. My dad was very suddenly bereaved 2 yrs ago total shock mum died suddenly and we found her when we arrived for her birthday lunch. Dad wasn't able to get help because of his dementia. Lived with him for 10 mths in his home he couldn't be left as he was a wanderer and would not have been able to feed himself etc. Tried 2 live in carers the second one was shocking. Very reluctantly we had to make a best interest decision to find a care home for him as he was too vulnerable 1-1 at home. This went against everything we knew mum and dad wanted but the decline of dementia changes everything. It was heartbreaking 2 yrs ago to take him into the care home he took 5 mths to settle to a degree of acceptance it was so so hard and I will always have the guilt monkey on my shoulder. BUT... it was the right decision at the right time. We had good support from an Alzheimer's Society home support worker and the best piece of advice she gave us when we agonized over it all...if dad went into a care home and the staff got to know dad well before the decline set in further and we had to then find somewhere in crisis with even more challenging behaviour the care would be even better because the staff had got to know dad well built up a rapport before he deteriorated so they understood his stage and triggers. 2 yrs on and in decline I can see it was good advice. Good luck if you have to think care home is needed it will be one of the hardest things you will ever have to do will feel the end of the world but you will come through it.
  9. awai2702

    awai2702 Registered User

    Sep 2, 2016
    Great advice

    Hi, I think that advice is a really good point. I'm sure if the care home staff are able to build a relationship with the patient prior to dementia completely taking over then they are able to see and respond to the little day to day changes. I also think this rappor helps patients on a good day too. Thanks for that :)
  10. Nenny

    Nenny Registered User

    Sep 15, 2015
    Residential care

    Hi I have empathy in what you are going through. My mum is exactly the same. I have Power of Attorney for finances but not health. So while she is still saying no and not a danger to herself we have no choice. I have a care package in place three times a day 7 days a week. Which for me is a life saver as I live a distance from mum. This gives me a peace of mind. I think eventually it will be taken out of my hands. Good luck

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