1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Tabby-cat

    Tabby-cat New member

    May 27, 2019
    7
    Does anyone have any thoughts about the pros and cons of a live in carer vs a care home? Mum was diagnosed 2.5 years ago and lives on her own with carers am and pm to help her with meals and bathing. Recently she has become very confused about her keys - how they work, how to lock or unlock the door etc - and I am concerned that she is not secure in her home and is even more vulnerable as a result. She is tearful and anxious a lot of the time. A care home would solve some of these problems, but I don’t think she is ready to move to a single room in a care home having lived on her own for so long. I wonder if a live in carer would be the solution, although she increasingly finds it difficult to get on with people so it might make things worse rather than better. I am struggling to find a solution to a stage (not needing full support, but needing a lot more than she currently has) that might be relatively short term. Would it be better to move her to a much safer environment sooner rather than later?
     
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,042
    Yorkshire
    hello @Tabby-cat
    a warm welcome to DTP
    that's a fairly familiar dilemma
    I notice you say that your mum is tearful and anxious ... sometimes it's the carer who puts a premium on the person being familiar with their surroundings in their own home which actually is becoming unfamiliar to them

    maybe visit a few local homes to see how they are and check on the financial side of things

    https://www.alzheimers.org.uk/get-support/your-support-services
     
  3. Tabby-cat

    Tabby-cat New member

    May 27, 2019
    7
    Thank you, I hadn’t considered that mum’s surroundings might be looking less familiar to her. I will look at some care homes. I have just had yet another telephone conversation with her when I try to explain the basics of keys - put the key in, turn the key etc. I can’t keep doing this, it is too stressful for both of us.
     
  4. canary

    canary Registered User

    Feb 25, 2014
    10,548
    Female
    South coast
    I think that, as relatives, we try and keep them at home for as long as possible - and this is what all the advertising tells us is the "right" thing to do. Unfortunately, in reality they often dont understand or even recognise their own home and trying to "fit in" with normal life is hugely stressful for them.

    It was long, long past the time mum aught to have moved into a care home by the time she did, but when mums GP first mooted to me that I aught to be looking at care homes my initial reaction was No - she isnt at that stage yet! She was though, and in the coming months mum refused carers, got into arguments with the neighbours, her house got into a terrible state, she wasnt eating or drinking and she started wandering at night. There was no way that she would have accepted a full-time carer (and she probably couldnt have afforded one anyway) and it wouldnt have solved the problem of her trying, trying so hard, to be mistress of her home and failing miserably.
     
  5. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,654
    Female
    As others have said, her home may no longer offer her the security and comfort you may think it does. My mother lived on her own and had carers in for four hours, then for six hours, she was fine when they were there, but anxious and upset when they were not - which left 18 hours a day for her to be anxious. She might have been okay with a carer there full time, but it was far too expensive to consider because she was also paying rent so her money would have disappeared fast.

    I didn't know how she would adapt to a care home, I too thought she would struggle. But of course a care home is not about being restricted to a single room. She has a bedroom she only uses to sleep, the rest of the time she has a huge house to wander round, and constant company. She has been there over a year and within weeks her anxiety disappeared - there is always someone to talk to, and to help and reassure her, and she's very content there.
     
  6. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    1,032
    My mother-in-law was very similar to this. She was on her own with carers three times a day, but we used to get anxious calls in the evening about keys,or strange things happening outside. It became impossible to tell her what to do over the phone. It became apparent that she could not cope alone, the problems were when the carers weren't there so even increasing their calls wouldn't have made much difference. She would not have tolerated a live in carer and it wasn't economically viable. She always refused to go into care, so we waited for a crisis. Eventually that came in the heatwave last year. She became ill, went into hospital and we organised a care home for her. We told her she needed to convalesce, before she went home, but the reality was she was never going back home. Looking back with the benefit of hindsight, she should have been in a care home sooner, once the falls started and she began to hallucinate. We were probably putting off the inevitable. By the time she went into care, she needed 24/7 supervision, she was no longer safe. It was the best decision we made for the family and her
     
  7. father ted

    father ted Registered User

    Aug 16, 2010
    689
    London
    My aunt steadfastly refused to stay in a care home she was placed in temporarily. The home was lovely but it 'wasn't home'. Fortunately she had the funds to return home with a live in carer and I genuinely believe it was the best option at the time. However it wasn't without issues. She did resent another person being in her personal space all the time although the carer was very sensitive to this and kept herself at a discreet distance when needed. She did become quite attached to this lady and when she took time off as needed my aunt did not like this either.
    As others have said she may not feel secure anywhere anymore- sad but true.
    In my aunt's case she remained with live in carer for 18 months until she went into hospital and never came out. She was happier than she would have been in the home so for her it was the right decision.
     
  8. Tabby-cat

    Tabby-cat New member

    May 27, 2019
    7
    Thank you all for your thoughtful comments. I have arranged to visit two care homes next weekend and will see what they are like. Mum certainly can’t carry on as she is. I get multiple phone calls every day from her because she is anxious, and it is taking its toll on both of us.
     
  9. canary

    canary Registered User

    Feb 25, 2014
    10,548
    Female
    South coast
    When you go and look at the care homes, try and look past the decor and other bells and whistles and look to see what the care is like. Better good care in a scruffy home than poor care in a beautiful home.

    Look to see how the carers interact with the residents. Are there places/times when there is no-one there? What sort of residents are there - are they at different stages of dementia (so the home will look after them until the end) or are they all at fairly early stages (indicating that probably once they get to a certain stage they will be asked to leave)? What activities are organised? Ask the manager what behaviour they would not tolerate - some care homes (even ones that say they are dedicated dementia units) will ask people to leave once they start being up at night, wandering, resisting personal care or incontinence.
     
  10. Kremlin

    Kremlin Registered User

    May 14, 2015
    4
    This is a tricky one. Recommendation is good, I have looked, but so far have managed with Carers coming in. I have just had a wonderful week away with Carers coming in. J knows them as they get him up and get him reach for bed. He thought I had been on a business trip when I returned and hoped the company appreciated me! I realise that this can't go on for ever, but I am so grateful for them. We are lucky to have local carers.
     
  11. Frank24

    Frank24 Registered User

    Feb 13, 2018
    22
    I was in the same position as you - but my Mum is adamant that she wishes to remain at home and all her hospital stays have had a bad effect on her not being within her own environment and whilst I am certain she will require care in a care home setting - I wanted to explore the live in care option. I was warned by many of the potential pitfalls, I spoke with Admiral Nurses etc and throughly did my research before employing someone via an agency. This individual turned up to work at My mothers house under the influence of alcohol and with an open bottle of cider in her bag which fell out as she stumbled into my Mum's home. This was the lowest point for me in this whole journey. Please use a reputable company. I am happy to say I now have someone excellent in place and my Mum is thriving but these type of arrangements are more complicated and difficult than they appear to be. They are expensive too. In my mothers case, I feel like its worth it and its been the right decision but it really depends on the individual carer you get on board and how the PWD is. Its like any sort of relationship - sometimes it works well and sometimes it doesn't.
     
  12. Helly68

    Helly68 Registered User

    Mar 12, 2018
    430
    I would concur with what others are saying about PWD and the concept of "home". By the time my mother went into a care home, "home" for her was not the house she had lived in for 50 or so years, but a comforting concept based around her parents (now dead) and the need to feel secure. Home doesn't always means staying at home in the way we understand it. My mum settled well into her care home and it gives her security though a regular routine and carers she has become very close to.
    When looking at homes, choose those that are happy for you to visit at any time - they should have nothing to hide. Also consider "bridging" daycare options, where you loved one visits the home during the day to facilitate an easier move from independent to care home living. We did this (sadly you probably need to be self funding) and it did help.
     
  13. Tabby-cat

    Tabby-cat New member

    May 27, 2019
    7
    Thanks for all the thoughts and observations. As of yesterday mum is staying in a care home for 2 weeks. Location was a difficult choice - close to mum's home or close to me. I looked at a few in both locations and went for the one that had the most going on, which happened to be close to me, as mum is still sociable and interested in others. I am feeling terribly guilty though and it was like abandoning a child. She is very confused about when she is going home - thinking it is tomorrow/in 2 weeks/never - and I keep wondering if I have done this too soon, especially considering the cost. Interestingly, in the 4 day run up to her going away she generally was in a much better mood, less agitated over things like keys, and calmer overall. She was on a bit of a high really.
     
  14. Jale

    Jale Registered User

    Jul 9, 2018
    272
    Female
    Mum had carers going in4 times a day and she hated them, many days she would not co-operate and it got to a point where she was hardly talking to anyone or eating. To cut a long story short the result was a 5 week stay in hospital and because she couldn't walk, had to be hoisted, doubly incontinent it became obvious that she would have to go into a nursing home - care homes could not cope with her.

    Mum has been in the nursing home for nearly 12 months now and not once has she ever mentioned going home. Some days she thinks she is in a special hospital - we call the carers nurses, and other days I think she must think she is home as she talks about watering her plants, cleaning the windows and cooking her son his dinner.

    I hope your Mum does settle - both for her sake and for yours. I didn't realise what pressure I personally was under until Mum went into the home. She is safe, I can relax at night not worrying that I'm going to get a phone call to say she has fallen or can't get off the loo.
     
  15. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,654
    Female
    My mother is in a care home near me in a location she doesn't know, but I realised subsequently it makes absolutely no difference as she has no idea where she is.

    Most people take a while to settle whatever stage they are when they first enter a care home, and it's very common for them to ask about going home and be confused about timescales. Even when my mother was still living in her flat, telling her something was happening tomorrow meant nothing to her - she lived in now, and now was the only point in time she understood. Give her time, it's very early days.
     
  16. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,110
    Toronto, Canada
    @Tabby-cat I'm glad you have found a suitable home and are giving it a trial. Please try not to feel guilty - I do know how difficult it is. Keep to the forefront of your mind that your mother is now safe and has people around her.

    My mother was probably about stage 4 when she went into the care home. She was mobile, dressed herself, fed herself and did not appear to have any issues. However, her short term memory was practically non-existent at that point. I realized this with a shock when, at about 2 months in, I left her for a few moments. When I got back, she greeted me as though she hadn't seen me in ages.

    I was given a very good piece of advice by her specialist on moving her to a nursing home - try to keep it to one move from the care home to the nursing home. Also, moving earlier is better than later, because the PWD has a better chance of developing relationships with staff and other residents if they are moved earlier.
     

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