When is the right time for residential care? Is there ever a right time?

Discussion in 'I care for a person with dementia' started by Munchkin, May 6, 2016.

  1. Munchkin

    Munchkin Registered User

    Apr 15, 2011
    8
    East Yorks
    My mum has lived with me and my partner for 4 1/2 years now. I moved her 125 miles away. Mum is almost 87. We have good days and bad days. On the good days, I can cope. On the bad days (when we either have to talk a load of rubbish or she imagines things), I feel depressed and stressed out. I take her out socially, but she never remembers going. She thinks that she doesn't go anywhere! I also employ a carer to take her out twice a week (on a Tuesday to an over 50s afternoon and on a Friday, shopping for an hour). I am almost 60 myself and very aware that this could go on indefinitely. I am also aware that dementia might get to me.... who knows if and when? Lots of friends (and even strangers) say that it is time to look after myself and think about putting mum into residential care. However, this makes me feel so guilty and I know that she wouldn't want to go. The question is, how long do we carry on putting our lives on hold whilst life passes us by? Do I owe her another 10 years or so of my life, by which time I will be almost 70.... Apart from the dementia, she is very physically fit. The doctor checks her bloods, blood pressure, weight etc every 6 months and all are perfect. I now feel (sadly), that moving her in, was the worst decision that I have ever made because I feel so trapped.. Is anyone else in a similar situation? Any advice greatly appreciated.... I am an only child and have no family support whatsoever....
     
  2. canary

    canary Registered User

    Feb 25, 2014
    9,642
    Female
    South coast
    I think that the time that you start wondering is the time to start looking at care homes.
    You are not committing yourself at that point, you can find out about the different types of residential home (care home/nursing home/dementia unit), decide which places you like and find out about the financial side etc all before you suddenly find that things have changed and you have to find somewhere urgently.

    Would she be self-funding (ie have over £24,000 in savings/property)? If so you have much more lee-way over the timing. If you are looking for LA funding then you will have to work with Social Services to agree that she needs placement and where that would be.

    Assuming that she is self funding - most places have a waiting list, so once you have decided on a place that you like you could put her name on the waiting list and if, once she reaches the top of the list, you decide that its not yet time, you dont have to take the place or remove her name from the waiting list - she can just have her name remain there. It also means that if there is a crisis and she has to be place urgently the home will be more likely to accept her.
     
  3. Pinkys

    Pinkys Registered User

    Nov 13, 2014
    157
    South of England
    T m

    So much sympathy, especially for the thoughts that it was the worst decision you ever made. Obviously at the time it was the best, and just because things are now different, because you know more, you are older etc, it doesn't mean you were wrong at the time.

    Meanwhile....baby steps maybe? Investigate local care options? Increase the time she is cared for other than by you? Start thinking about what would constitute 'unsustainable'. This might be major incontinence, wandering, violence, waking 10 times a night. You do not have to push the nuclear button today, but you would be wise to start thinking about it.

    My own mother went into care as 'convalescence' following a breakdown at 94. She kept saying that she had gone 'too soon'. Actually we thought she had delayed too long, as she was just a little too frail to be able to get settled and enjoy what was on offer. So it is a finely balanced thing.

    And never think that you have to get your mother's approval or agreement. She will not be in a position to give it. You will have to act in her and your best interest, what is needed, not what is wanted.

    And also never think that she will necessarily be unhappy in a CH. My MiL has pretty much lost the capacity to be happy or unhappy. We waste much time trying to make her happier!! But that is for us, not her, she would be no happier at home or in our home.
    Other people have a new lease of life and have great time, as far as they can. A friend's father took up dancing, despite his advanced dementia. His wife was livid as he had refused all his life. I know that is a sentimental kind of 'dementia can be wonderful ' thing, but it does happen.
     
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,564
    Yorkshire
    Hi Munchkin
    I agree with everything said so far
    If you are beginning to think it's time - then start looking, visit a few care homes in your area - you may decide either way, then, but you will have gained a good idea of what is available and the costs
    in the meantime - ask Adult Services for a re-assessment of your mum's care needs - and yours as a carer - it may be that some days at a day centre might lessen the pressure on you
    I also notice that you say YOU employ a carer - I hope that your mum is paying for this (have you gained Attendance Allowance?) as you yourself shouldn't be out of pocket - and she should also be contributing a fair share to your household expenses
    maybe try a respite break for a week to see how you all respond?
    you have cared for a good many years, maybe it is time to leave the 24 hour support to others and spend your time being her caring daughter when you visit, and having more time with your partner, just the 2 of you
    best wishes to you all
     
  5. Candlelight 67

    Candlelight 67 Registered User

    Nov 4, 2013
    167
    West Sussex
    I am also an on!y child like you and have just started to look at the local homes. There are so many different types and the two I have seen are very different. I feel you need to be able to take your time to look if you are lucky enough to have it.

    With me I have been thinking of looking for a while but as my mother had a uti I realized I would not be able to cope. I can't say I don't feel guilty and a traitor whilst I look. You have to think of you both. You have a life too. Being self funding is slightly easier too.

    Unlike you my mother lives on her own. Well done in having your mother to live with you. You have my admiration.

    I totally agree with the other comments too.

    Candlelight 67
     
  6. All I can say is "you have nothing to feel guilty about and nobody to answer to" you have done enough, and when you feel enough is enough, that is all that matters. You deserve a life, and you have given her so Much already. You'll probably be able to offer her more, by visiting than you can as her carer once she finally goes into a home. Try not to feel bad, make the right decision for you. Your life is important too!
     
  7. grumpy otter

    grumpy otter Registered User

    Apr 26, 2016
    21
    I am basically in the same situation as you--also an only child--but because I am in the United States, my options are a bit different--I am stuck here. If I knew then what I know now, I wouldn't have moved in with my Mom to care for her.

    But since I am here and have to deal, I am trying to stay positive and craft some sort of life for myself with things I can do from home.

    I so feel you when she says she doesn't go anywhere--people will come to visit my Mom for 2 hours, and when they leave she says "No one ever comes to visit me." It's hard.

    I hope you can find some help and some options.
     
  8. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,593
    Yorkshire
    Lots of people would have moved their parent straight into a CH so perhaps it's time to pat yourself on the back and think of the four and a half years she's spent with you as a positive bonus you've made to her life.

    But I agree with the others, when it feels like it's time to ask that question, it generally is time to make the move. Far better than waiting for a crisis.

    And that way, you will be able to re-establish the mother-daughter relationship by sharing the care.
     
  9. annnie

    annnie Registered User

    Jan 22, 2015
    39
    Hi Munchkin,
    I feel for you, I have had my Mum living with me and my OH for 18 months and have found the rollercoaster of conflicting emotions we all go through very draining. You have done amazingly well to have cared for your Mum for so long. You must be exhausted.
    I agree with all the good advice above, If you could get a little respite you may be able to think clearly and talk with your partner about what you want/need to happen next.
    I am about your age and do feel conscious of life passing me by. Though that is probably true for anyone any age who is caring. Sometimes I look at Mum and wonder if I am seeing my own future.
    A couple of weeks after moving in Mum had to have emergency surgery and on discharge the hospital was going to find her a care home, but I said I would take her home. Sometimes I do think life could have been very different.
    Sorry, not really any advice but hope you don't feel so isolated.
     
  10. Leswi

    Leswi Registered User

    Jul 13, 2014
    120
    Bedfordshire
    I have felt the same for the last year. The thing that changed my life is finding a team of marvellous carers to help look after mum. We did put mum in care for a while but it did not make my life easier and did not work out so brought mum home. I get no help from anybody in the family whatsoever with care. I have now got night shift carers, regular daycare and carers to stand in when I am away. If you are self funding you could just sort similar yourself. We are not self funding and had big battles with Social Services to get what was needed but got there. I found my own carers and get direct payments which gives me control of the care. I have not got back all my old life but can take short breaks and make plans which makes such a difference.
     
  11. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,549
    Female
    Auckland...... New Zealand
    Up until Christmas gone, I would have thought my Mum (75 with AD) would probably be needing to go into care in the next 12 months or so...
    but then urinary incontinence started and it has been a roller coaster since.

    2 UTI's, 2 suspected UTI's ( No. just progression of dementia) several trips to afterhours doctors, a trip to hospital, a marked decline in cognition and short term and increasingly long term memory, and given the chance Mum has started to wander now ( thankfully we have seen her and managed to stop her)
    Mum is up and down from 3am onwards turning the lights on and off, no longer having a sleep mid afternoon, and several times now has been in bed from 6.30-7pm. She used to go to bed at 9pm. I have had to wake her to take her evening meds.

    My parents live in their own house behind mine. Dad (78 with MCI) is having a hard time coping at all... in fact he has no coping skills, and he is frequently agitated by Mums behaviours and it causes arguments. Lack of sleep for him is a big factor though.
    I work 3 days a week, and I have had him knocking on my door at 6am a few times to come and sort Mum out before I go, because in his words " she's going bananas" . All it really is, is the fac that she cannot remember what day it is, and whether she has her Alzheimers groups on that day. She insists shes been, Dad says she hasn't, says we are all trying to make a fool of her, and then the arguments start.:rolleyes:

    The minute I mentioned Respite Care to my sister, No! Mum was not going into care, and was no where near that level, and we just need to come up with "solutions"
    A heated discussion on the phone ensued, and what do you know within a few days I developed shingles.

    Mum has had an assesment and is now entitled to paid Respite Care... remains to be seen when we use it. Also now have carers coming in to shower Mum and get her ready on the 3 days she has Alzheimers groups.
    Mums memory testing was so poor, they also said she now lacked mental capacity and to see our GP about having her assesed also and POA enforced, and in their view she was at care stage. Waiting for the report to show my sister... what good it will do I don't know.

    Taking things day by day now.... :(
     
  12. dottyd

    dottyd Registered User

    Jan 22, 2011
    1,066
    n.e.
    All excellent advice which I echo. Get mums name down for when the day dawns.
     
  13. BeardyD

    BeardyD Registered User

    Jan 19, 2016
    89
    Many homes also do day-care and even offer free "sampler" days. If your Mum is fit enough you could try out a few homes to see how she takes to them. Her reaction will help you to decide not just if/when but what type of home will suit her. She might like a particular home or even make friends there. She may even say "I wouldn't mind living here". - Sorry drifted into fantasy there, if only life were that simple.

    Although my wife is nowhere near the residential home stage yet I have found Dementia Cafes and day-care to be good stepping stones.

    No criticism of anyone here (and in the best possible taste) but I find the phrase "putting someone in a home" reminds me of the end of an Eastenders episode (East London accent) "You behave or I'll put you in a home you **** !!" (Drums play closing music). Try thinking of it as her just going to live somewhere else or moving to a hotel, your Mum will stop being a burden and may become your Mum again.
     
  14. susy

    susy Registered User

    Jul 29, 2013
    806
    North East
    I would go and look at care homes and would get her assessed by the social workers for funding. Is she getting attendance allowance? This isn't means tested so that should be given no problems. I would look at care homes and in the mean time give yourself a break by getting her into day care. There is a fee for this but it's your mum that pays not you. (In other words, your mums money that you use and this is assessed by the social services to see how much they pay and then how much your mum pays). Look also at getting some respite and her trying out the homes. You can visit her and it is laden with guilt if you let it but be honest, you need a break and she is warm, fed and entertained. The people around her will/may become familiar as you are. If you need more carer visits then get them for the days when she is with you.
    My dad is in respite now (the first time) and it is laden with guilt for me as he just wants to go home but and this is a massive but, my mum who is his main carer was so close to carer breakdown it was untrue. We got him into a lovely place for 2 weeks. He is ok, still wants home but is placated. My mum is loving the time off. It took her over a week to start to unwind and I dare say she will be looking forward to having him back as well as dreading it, in equal measures.
    The feelings of guilt are daft to be honest although I still do feel like that. We were in a situation where we had no choice so we sorted and did it and this will have to be a regular thing. The upside of that being that if anything does happen to my mum (she is 86) then he will have a familiar place to go to.
     
  15. Rodelinda

    Rodelinda Registered User

    Jun 15, 2015
    172
    Suffolk
    Munchkin, your situation has so many resonances with mine it's a bit uncanny. I really empathise. My Mother (nearly 90) moved in with us 4.5 years ago (from another part of the country), she has vascular dementia and my only brother doesn't keep in touch. We are going through the same emotions. I'm 61, my partner coming up to 65. I gave up my job soon after she moved in as I couldn't cope with the stress of the caring and work a 2 hour commute away. My friends say the same to me about this being time to think about residential care. And I know that everyone's responses to your post give good advice. But, like you, my mother doesn't want to live anywhere else and won't go to day centres or socialise in any way (she never did really) and doesn't want anyone else in the house. She is increasingly frail (though as strong as an ox constitutionally). We've thought through our 'red lines' so we know our limits. But I feel guilty about even thinking about making the decision. Like you we are beginning to feel trapped (we can't leave her in the house on her own) and have to admit to feeling resentful at times. The guilt monster hovers just behind me at all times. She had 2 weeks in a care home late last year and wasn't particularly happy but we had a bit of a break (and although we spent most of it decorating her downstairs bathroom which we can't do while she's here we did get away for 4 nights). I suppose my best advice to you is to start by doing something like that - if you can, organise some respite care and have a break; you may get an idea of how she gets on in the environment and it will help you get things into perspective. There are lots of threads on the site which show how positive the experience of moving can be for the person with dementia and their carer. But I really feel for you. Sue
     
  16. Pinkys

    Pinkys Registered User

    Nov 13, 2014
    157
    South of England
    No criticism of anyone here (and in the best possible taste) but I find the phrase "putting someone in a home" reminds me of the end of an Eastenders episode (East London accent) "You behave or I'll put you in a home you **** !!" (Drums play closing music). Try thinking of it as her just going to live somewhere else or moving to a hotel, your Mum will stop being a burden and may become your Mum again.

    Do so agree. We never say 'putting someone in a hospital', do we? I suppose the implication is that the person will never agree and will have to be forced.
    How do we lose the stigma, the fear? is it so much the unfamiliarity of the change? of the reality of ageing and the loss of autonomy? Most people seem to settle well and soon. Will we feel differently when our time comes? Dementia seems to make people so utterly 'selfish' as any illness can do. All pain hurts, and mental and emotional pain really hurts. There seems to be no room left for any consideration of others. will we be different? Let us hope so for the sake our our children and families.
    meanwhile, a competition for a better phrase.
    We had to put Mum in a home becomes
    Mum has moved to assisted living.
    Mum is being cared for professionally.
    Mum is in more suitable accommodation.
    Mum is living with 24 hour care
     
  17. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    I have to say this did make me smile a little - everyone is selfish or at least most people are - dementia doesn't make them selfish it just accentuates it because the person becomes more dependent and because we are selfish we find it hard to cope. That isn't a criticism it's just a part of life. We are programmed to look after our children and so we don't agonise over it...but looking after our older folk creates all sorts of issues that it never used to and that is partly of course because we have our children later and we live longer....and we all expect so much more from life.

    I think people's circumstances are all so different as are their relationships. I'm not at all sure the situation will be the same when our turn comes, will we have sorted out abuse in care homes? will we have care homes that truly meet people's needs, will have a more equitable system of paying for care? will flexi care and independent living with a care team on site be more prevalent (I do hope so)? or will they have found a cure for dementia and we can all return to old age forgetfulness and more community living and more of the 'old days' without the slog! Who knows!

    I think your decision has to be based on what you can live with afterwards - if you think the way forward for your Mother's best interests (first and foremost) and that she would receive better care, have a better quality of life and your relationship with her would be improved and more fulfilling for both of you then you won't have a ton of regrets to deal with. I guess that all depends on finding the right place for her, and possibly trying it out for respite (the doctor has said that he wants you to go for a week - or two). It takes a while to find the right place (carers cafes are a great source of local information) or perhaps if you could find good day care/lunch club (don't sell it as day care) then that would give both of you the space that you need.

    Not everyone becomes incontinent etc etc etc - my mum was almost 92 and had had dementia that we know of for over 4 years and apart from a terrible short term memory which was really destructive and the fact that she needed pads she was in fine fettle until three days before she died. BUT lunch club and memory club and sitting hours were ESSENTIAL for my sanity. I also had her name down at one of the best homes in our area with the agreement that they would phone me when she came to the top of the list and then keep her there until we needed a place - phoning me and i'd say 'not just yet' and we never did use it but it really kept me going to know that if the time came we wouldn't be in crisis. Planning, planning, planning lol

    Good luck whatever you decide to do. keep posting x
     
  18. JanetteK

    JanetteK Registered User

    May 8, 2016
    1
    Care home dilemna

    Like many of the respondents I found myself in a similar situation. I am an only child but have a very supportive husband and daughter. My father who was in very poor physical health but as sharp as a tack mentally, passed away over 18 months ago leaving Mum who has Alzheimers. Dad's wish was that we found a good care home for Mum but she was adamant that she wanted to remain in her own house so with the support of the local authority who put a care package in place and visits most days by me she managed to cope until recently. However, Mum's mobility and continence deteriorated and I often found her feeling depressed and saying that she was lonely. Things came to a head at new year when she had another fall that had her admitted to hospital and we made the difficult decision that a care home was the only alternative. We did consider having mum come to live with us but as i have my own health issues this wasn't an option. Mum is now in a lovely care home and although she would never admit it enjoys the company and is joining in with the various activities provided. She still talks about going home but so do most of the residents in the Care home. I visit Mum several times a week but the time I spend with her is quality time instead of doing her housework and shopping. My advice would be to spend some time visiting several care homes, decide what criteria are suitable for your loved one and hold out for your first choice.
     
  19. Missy

    Missy Registered User

    Dec 18, 2006
    71
    The right time for residential care is when you feel you have had enough and can't cope any more. There is no shame in it at all. For us that was when my FIL could no longer live alone and we were told he needed round the clock support which we were not willing to provide - ie straight away. For others it will be never. For some after a period of time.
     
  20. chrisdee

    chrisdee Registered User

    Nov 23, 2014
    171
    Yorkshire
    A bit of support from the fair county of East Yorkshire. Agree with all the above posts, maybe with one exception. No, you are not expected to put your life on hold for the next ten years! and I completely understand the despair this remark was probably made with.
    Things can change quite quickly, even with the seeming robust which my Mum certainly was too. No one ever asks to go into care, as there is not much wrong with him/her is there? Our red line [self and bro] was the wandering, which became dangerous, and I think stemmed from mood change [you see, I'm ok really]. Agree with others, do your research and make a move once things change, or its all just too exhausting. We certainly could not have lasted 4.5 years, you have do so well. Everything to do with this disease is so hard. For many/most, self preservation becomes essential, and IMO, this is a healthy response. I wish you all the best, heavy hearts seem to go with the territory too.
     

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