Care Home Vs Staying At Home

Discussion in 'Middle - later stages of dementia' started by Scotty235, May 1, 2019.

  1. Scotty235

    Scotty235 New member

    May 1, 2019
    #1 Scotty235, May 1, 2019
    Last edited: May 1, 2019

    I am new to this forum - but have previously supported the Alzheimers Society with charity events as dementia runs in my family.

    I have a dilema, and would appreciate other people's view and experiences.

    My mum is 76 years old - coming up to 77 this November. She was diagnosed with dementia 5 years ago and based on the scales of dementia is probably 5-6 out of 7 / Moderate.

    She lives on her own and has always stayed independent with lots of help from the family.

    We have arranged for carers to see mum 3 x a day for 1 hour a time - to help with personal care and also for companionship. Mum has 3 children ( myself and my two brothers) but we all work full time and have very busy jobs. We do our best to help mum, and we are a close family but I feel that mum needs more help.

    The carers are unable to help mum with personal care, mum simply refuses. They assist with her meals and basic household chores. Mum can use a kettle and toaster, but that is all.

    We tried a day care centre - so that mum could meet people and socialise and take part in music quizzes etc but mum was rude to the organisers and didnt want to be there.

    My concern is that my Mum is lacking mental stimulation, ie conversations, company, things to do and she is not getting the care I feel she needs. She gets up in the morning, wanders around the house and during day (apart from carers) looks out into a garden, no-one walking by (cul-de-sac). She has called us at times to say she is fed up and lonely, sometimes she doesn't know its her home, which is really sad.

    On the flip side, I have taken her to a Residential/dementia care home where the facilities are fantastic. Very lively environment where they promote independent living as much as possible. Activities to take part in (if you want to etc). We have visited there a few times and mum loved the people and the place (as a visitor).

    I have arranged and paid for my mum to have 2 weeks respite there, so she can see how she gets on and whether she likes that type of environment.

    The dilema is twofold Firstly - Family - myself and 1 of my brothers believe that mum would have an opportunity to enjoy life more if she went to the home (assuming mum likes it) as the facilities they have for dealing with people with dementia are fantastic and we think it might give mum a new little lease of life. She used to be very sociable but is just becoming isolated now. However, some family seem to frown up 'care homes' and see it as an easy get out - or last resort type of care - but from what I've seen at this home, it isn't the case. It is lively, fun, encouraging and seems to provide an opportunity for elderly people to enjoy each day.

    My eldest brother believes mum is better off at home in a familiar environment. I'm struggling to see this, as she is becoming isolated, confused, anxious and sometimes quite distressed. Although she has a lovely home, she is almost becoming a prisoner in it. I'm beginning to think I'm missing something here - ie is it better for someone with Dementia to be in a familar place - albeit lonely and struggling? Obviously, even in a care home, mum will struggle, but she will have people around her to help her - so hopefully won't be as anxious.

    The differences in opinions is putting some strain on our family relationship, which is sad as we have always been close and always agreed on family matters.

    Secondly, making the right decision - we want to do the best for mum and make the right decisions for/with her. Her moods and thoughts are very changeable and that makes it harder for us to understand exactly what she wants and what she would enjoy. One day she loves her home and wants to stay there - another day she hates it, is lonely and depressed and wants to move to the care home she's seen. If she stays at home, we will probably have to release equity to help fund care costs, if she goes to the care home, we will have to sell her house to fund it, so either way, it's a big decision and will be difficult to reverse.

    If anyone has any thoughts on whether people with dementia are generally better cared for in their home that would be appreciated. How do you go about helping that person make the right decisions when their moods are so changeable?

    Thank you and sorry for the long post!
  2. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I think that you are right that society sees a care home as a very negative thing - akin to putting someone in the work house or an asylum!

    In my mums case moving her to a care home was a very positive thing. Up until she moved she had fought against going tooth and nail, but she wasnt looking after herself at home, was lonely, anxious, had got quite paranoid and had fallen out with all her neighbours. Half the time she wouldnt even let me in her home. She ended up in hospital with a TIA and was found to be severely dehydrated and malnourished and went from there to her care home. After a few weeks she settled, made friends, joined in all the activities and started to put weight back on. In short, she thrived there and was content. On more than one occasion she told me that she liked living there. I still feel that it was the best decision I made for her.

    How much contact with her do the family members who think that she would be better off in her own home have? Usually its the people who dont see them very often who think this. I know that its banded about by officialdom that people are better off in their own familiar surroundings, but, quite frankly, I think this is a money saving exercise and when you are dealing with dementia there comes a time when it is simply not true.
  3. Scotty235

    Scotty235 New member

    May 1, 2019
    Thank you Canary for your response.

    You are right. With the exception of my eldest brother who is also against a care home, the other family members are ones who rarely see my mum and do not understand the daily challenges she faces.

    I took my mum to an Alzheimers fundraising afternoon tea at the CH and mum had a great time. I took videos of her playing an inflatable guitar, singing along and having fun. Those that dont agree with the CH didnt comment anything positive about mum having a fun.

    For me, I met residents and residents family and spoke to them about living there. You could see the residents family laughing and enjoying the time with their mum/dad their and it was just lovely to see. My mum left there and wanted to move in - but I realise that the event we went to isn't a daily thing and also she had me there with her - so wouldn't reflect a normal day there for her if she lived there.

    We have social services saying people should stay at home for as long as possible (which helped my eldest brothers cause) and the mental health clinic saying mum could really benefit from the right care home to keep her brain exercised and as healthy for as long as possible (which helps my cause)!

    It's nice to read though that you feel your mum thrived there - gives me some hope. Thank you.
  4. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    Hello @Scotty235, welcome to the forum.

    I care for my wife and hope that I am many years away from having to make the decision you now face. However, I have often read what Canary has said, that people can thrive when put in full time care.

    I understand your comment about how your Mum's opinions can change from one day to the next as my wife is like that. There does seem to come a time when decisions have to be made for the person to ensure their best interests are protected. With that in mind, is there Power of Attorney in place?

    You will find lots of information, including help with the questions you have raised, in the AS Publication list that you can find with this link

    This links will take you to a specific factsheet that deals with your question, just click the PDF line
    Care homes - when is the right time and who decides? (476)
    PDF printable version

    Otherwise, do take a good look around the site as there is a lot of information and wisdom here. If you have any specific questions just feel free to start your own thread in this sub-forum
  5. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    #5 Shedrech, May 1, 2019
    Last edited: May 1, 2019
    hello @Scotty235 and welcome

    yours is a question many of us here have faced
    I am struck by this: "sometimes she doesn't know its her home", which might help you answer those family members who say she's best in familiar surroundings as the lack of recognition will most probably increase
    if your mum still has capacity, the choice is pretty much hers; if it's fluctuating, maybe a move that she believes is short term, but you know is permanent, will help with actually making the move

    as for finances, if your mum remains in her own home, it is disregarded in any financial assessment re care fees, so please don't go down the equity release route ... once she moves out, the property is included in the assessment, so indeed may have to be sold
    these pages on the main AS site may help you

    I hope you have LPAs in place so you have the legal authority to support her in managing her affairs
  6. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    When my dad was at the stage your mum is now I was thinking about finding a carehome for him. It had become obvious that he was no longer coping, could do very little, had no self motivation and didn't even recognise his own home.

    The decision was taken out of my hands as dad had a stroke and was taken to the carehome from hospital. This made things easier for me as I know dad would have refused to go otherwise.

    Social services were determined dad should return home even though it was obvious he'd be back in hospital within 24 hours. He couldn't walk anymore but had the strength to stand up and fall over!! So ignore their opinion if your mum will be self funding.

    Dad didn't go home. I stood my ground and he spent the last few weeks of his life well cared for, safe and, I believe, as content as he could be given his advanced dementia.
  7. Scotty235

    Scotty235 New member

    May 1, 2019

    Thank you for your response.

    We do have registered LPA's etc so all that is in place.

    The links you have given are REALLY helpful - especially the Care home one which I'm printing off right now!

    Thank you and sounds like your wife is in good, safe hands. Best wishes to you
  8. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    You could have been describing my mother-in-law's situation. She had been living on her own for many years and for the last four years of her life she was living with mixed dementia . She had a personality disorder and other mental health conditions diagnosed way before the dementia and as you have already described she found it difficult to socialize go to day centres and required family to see to her every need. The only family she had who was remotely interested in her care was my husband and myself her daughter lived abroad and to be frank really took no interest.

    She had carers coming in three times a day but she refused personal care in fact it got to the point where her hair had not been washed for over 5 years. As far as she was concerned she didn't of course need any carers she could do everything herself the reality was she could do little for herself. She was very isolated socially and spend long periods of time on her own. My husband and I felt that she needed to be in full-time residential care and 24-hour supervision she was a high risk of falls and needed the appropriate stimulation. We also knew that she would have refused point-blank to go into a home and my husband was not prepared to dupe her in anyway to get her into a home. So we waited for a crisis which eventually happened last summer in the heat wave she became very ill went into hospital and we took the opportunity while she was in there to get her into a dementia unit in a care home.

    The move for her and for us as a family was the best decision we made. She was safe ,clean, had plenty of stimulation and good caring staff who took the pressure off of us as a family. Yes she was self-funding which meant we had to organize the sale of a house but we felt there was no choice . She was no longer safe at home she had got to the point where she couldn't even remember where the bathroom was in her own home. The problem with my mother-in-law was not when the carers were there it was when they weren't there . We felt that her needs outweighed what she actually wanted to do. The home she was in was excellent and a really felt like they knew how to deal with dementia.

    For my husband the dynamics between him and his mother substantially changed. The relationship was no longer waiting for a crisis to occur and trying to have to deal with it and deal with his own resentment over it. He was no longer her carer he became her son and was able to talk to her and discuss things with out her getting angry about whether he had or hadn't done something. The pressure on him lifted and his sense of anger and resentment over having to deal with his mother virtually vanished overnight. She quickly deteriorated in the care home and it got to the point after a few weeks where in fact she didn't even recognize us.

    Up to this point we had had no experience of any sort of care home or nursing home. I agree with other posters that there is often a negative image of a care home our experience is actually very different . Of course because my mother-in-law had assets we were able to make important choices about the care that she needed and I do appreciate that sometimes people are not in that situation. Would we make the same decision again looking back in hindsight? Yes we would
  9. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Yes, I swear its a money saving exercise.
  10. Scotty235

    Scotty235 New member

    May 1, 2019

    Thank you also for your comments and links. Have had such useful information from everyone already - it is much appreciated.

    We do have registered LPA's in place - we did that years before mum was diagnosed with dementia.

    Many Thanks!
  11. Scotty235

    Scotty235 New member

    May 1, 2019

    Really sorry to hear about your Dad - dementia is such a cruel disease and I appreciate your honesty regarding how you felt about the care home. Good for you for standing your ground - I'm feeling like I have to fight everyone to get the right care. Social services offered 2 to 3 x 30 mins slots for care - I ignored this and set up as much care as we could afford (which still isn't enough in my view) and SS reveiwed their decision and increased their help.

    So far, the feeling I'm picking up here is that family get some comfort from knowing their parent is safe and well cared for. My mum would be self funding, so that does give her more options than if she had to rely on social services alone.

    Thank you very much for taking time to help me.
  12. Scotty235

    Scotty235 New member

    May 1, 2019

    Your post really hit a nerve as the circumstances seem so similar - thank you for your reply and honesty.

    My mum is looking dishevelled as the carers struggle to help her with personal care and (just like your mother-in-law) we are concerned that she has long periods of time between baths and hair washes.

    Like you said, it's also the time when the carers aren't there that is often the issue as that leaves many hours a day lonely, isolated and often anxious.

    My mum has started cutting her own hair (cut her ear in the process) and has cut through her xmas tree lights when she couldn't figure out how to take them off the tree. Social services weren't too concerened with this, but this worries me.

    Your post has been really helpful - thank you so much.
  13. Scotty235

    Scotty235 New member

    May 1, 2019
    My mum would be self funding (sale of house) and therefore SS would not pick up the bill. Seems terrible to think they would encourage people to stay at home rather than benefit from professional full time care - just for money:eek: I was surprised that they weren't at all concerned when I said my mum had cut through the xmas tree light leads - which was plugged in but switched off.. Their view was that we only had to worry once something had actually happened, which surprised me to say the least.
  14. canary

    canary Registered User

    Feb 25, 2014
    South coast
    The LAs are so strapped for cash that SS seem to be only able to respond to a crisis these days.
    I guess they are not allowed to give different advice to people who are self-funded
  15. imthedaughter

    imthedaughter Registered User

    Apr 3, 2019
    I've just had to make the difficult decision to move my dad to a care home. He's pre diagnosis but can no longer organise himself or keep track or time or days and the independent living place put him on an eviction notice. The LPA for us is still pending. He doesn't do his own personal care except shaving and won't let anyone else do it and was sitting almost all day on a filthy, soiled 30+ year old mattress on a divan bed which had been mouse infested, which he refused to change.

    I say the care home isn't so much for him as me but he clearly needed help. I can't take the constant phone calls (I live seven hours drive away) from SS or his GP or whomever any more and the stress and worry has me grinding my teeth at night (two chipped teeth so far and counting). I know this sounds so selfish but he is much better off there for as long as he can afford it. There are people there who know and care for him all day every day. The other residents are lively and have lots of things to do. They even put up with dad playing the piano and telling his RAF stories. My brother and I are hoping we can visit with his grandchildren and have a nice time with him rather than going down at short notice to deal with an emergency. Honestly I don't think there is such a thing as familiar surroundings any more once dementia is advanced but you can have people on call who can help you navigate the pathway whether that's to the bathroom or to an improved mood.

    ANITRAM Registered User

    Feb 2, 2019
    My MIL moved to a care home in the later stages of dementia following a crisis - I so wish we had done this much much sooner . She is too far advanced to appreciate at lot of the activities on offer but I can see regularly others really enjoying their time in their new home . My MIL got to the stage where she didn’t even recognise her own home and complained constantly she wanted to “go home “ when she was already home !! This stage comes for many PWD . The media portrays care homes in a very bad light but if you do your research you can find somewhere good . Those relatives who don’t visit now will certainly not visit the CH so find a location that suits you as in the later stages visits will be very regular and a convenient location will be important. My advice is make the move before the inevitable crisis .
  17. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    I think this is a very important point - beyond a certain stage with dementia and I think it can be quite an early being on one's own creates anxiety and unhappiness.

    My mum had a mini crisis and I moved her to sheltered extra care/assisted living - her anxiety levels fell, and she became happy. She told me many times in the first few years she was there I had made a good choice and she was happy. I think in her large house she knew she was meant to be doing something but wasn't sure what. In her small flat she has little to worry about and has got used to the carers.

    I wouldn't have been able to move her without the crisis but she thrived when she was first there, joining in all the coffee mornings etc - having a dedicated area to do jigsaws in her flat. She has taken a downturn in the last few months but is still happy there, dozes on her bed a lot of the time but knows the carers will be along soon. I have wondered if a care home would be better for her now but don't think she has the energy to join in with things anymore and doesn't really understand what is going on. She is happy.
  18. Sirena

    Sirena Registered User

    Feb 27, 2018
    As others have said, social services say a person should stay at home as long as possible because it's cheaper. That works fine if someone is still happy and safe at home, but SS often leave it way past that point, often until a crisis like a serious fall.

    My mother was fine with carers at home for a while, we started at four hours a day, ended at six - but in the end it wasn't the answer. She needed company and supervision 24/7. I too always thought of a care home as a last resort ("has it really come to this"), but she's been there for over a year now and I can see it is absolutely the best thing for her. At home she was fine when the carers were there, but most of the day she was alone and became increasingly anxious and lonely. At the care home she has a variety of people to interact with and to reassure and help her 24/7, and her anxiety has disappeared. It is genuinely now her new home, and she doesn't mention her old one.

    You can't rely on your mother to tell you what she wants, because she doesn't know. She wants to feel 'better', and she doesn't know how that will be accomplished. As she already likes the care home, why not see how she gets on for a fortnight, then if she likes it extend it for another two weeks. You may find she is more settled and you feel able to make the decision after that time, and your dissenting relatives may come round to the idea.
  19. Jale

    Jale Registered User

    Jul 9, 2018
    I never wanted my Mum to go into a home, but after her last stay in hospital it was apparent that she would no longer be able to live at home, and she had to go into a nursing home. Mum had carers going in 4 times a day but she hated them and would refuse to use the commode or eat her dinner.
    Since she has been in there she has "improved" in so far as she is eating better, and sometimes joins in with activities, singing etc, and even if she doesn't do this she is nosing about what other people do. She is rude, sometimes aggressive but the staff have been brilliant with her.

    I am relieved now that I'm not going to find her on the floor if she fallen out of bed, no longer struggle to give her medication, and not having to worry about water infections or pressure sores.
  20. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    I am currently in a similar position @Scotty235 . I am struggling to provide the personal care my wife needs and she gets next to nothing in terms of mental stimulation except on the one day a week that her day support worker comes. When she has been in residential respite the feedback about her mood and behaviour has been positive and I have seen some of this myself. I have convinced myself that she may well be better off in residential care and, as she is self-funding, we can go ahead with this without relying on social services. Which is why, with much trepidation I have booked her for a fortnight's trial at the care home that I thought would best suit her when I inspected a few some months ago. If the stay goes well then I'll face the big decision as to whether this should become a permanent arrangement.

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