1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. Augustbaby

    Augustbaby Registered User

    Apr 4, 2015
    10
    Mum has had Alzheimer's for nearly 4 years, she'll be 84 in May. She is immobile, can't do anything just sts in her chair all day, due to problems with her legs. She is in sheltered housing and carers go in four times a day to see to her needs. She is now wears pads as is urine incontinent.
    I live a long way away, other end of the country.
    Couple of times Mum has had urine infactions which knocked her for six, never been the same since the 1st one. Recently the carer has found Mum on the bedroom floor a couple of times, unhurt, but no idea how long she had been there. Mum does have an alert pendant, but it's hard to tell if she still knows to use it. In a seperate incident she also rang the police to say she felt trapped, shocked that she remembered how to ring them as she does not now use the phone. She told SIL about the police but I thought someone must have said something, didn't know how police would be involved because we were't informed officially by the housing association or the police, the SIL found out from HA it was true

    I have been the one who wanted Mum to stay in her own home, knowing she would hate a CH, has said in the past she will leave her flat kicking and screaming. But I'm so sick with worry, there just seems to be no end to this, and it is made worse being so far away. I think if she did go into CH that would be it, no one would go to see her, only me one or twice a year. My SIL is the main contact point and I find her hard to deal with, brother doesn't want to know. Now I think it is probably time for a C H, but how do I do it to my Mum? I think if I don't do it will go mad.
    I feel so sad I've lost my Mum but she's still alive, is it terrible to wish it to end?
     
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,942
    Female
    Dundee
    I'm so sorry to read your post. It's very sad.

    First of all I don't think it's terrible to wish for it all to come to an end. I think it's quite natural to wish for peace for your loved one.

    To me it does sound like it might be time for your mum to go into residential care. She will at least have the company of the other residents and the staff there. If you were able to arrange a visit to your mum for a few days perhaps you could start the conversations. As your mum has carers I presume she has a care manager. It might be an idea for you to have a chat with him/her by phone to express your concerns about your mum's vulnerability and safety.
     
  3. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,343
    Merseyside
    Welcome to TP :)

    I think the way you are feeling is natural. I feel the same.
     
  4. AnneED

    AnneED Registered User

    Feb 19, 2012
    81
    East Yorkshire UK
    People may hate the idea of a care home but they won't always recognise one when they are in it. It sounds as if your mum is lonely where she is and at some risk so it is worth fully looking into this, without necessarily explaining to her using the words 'move to a care home'.

    If she is immobile and incontinent she may well feel uncomfortable and if she can't do anything physically or get enough mental stimulation she may well start to feel trapped. A care home isn't perfect but there is activity, people, care and monitoring, all of which are a good thing much of the time.

    It is a hard decision and one I think about quite often when mum has a 'down' period, and will have to make for her before too long.

    Loss with dementia is a long running thing - the loss when you don't get a birthday card for the first time; when she asks you accusingly when you are going to visit only a few days after your last visit; when she doesn't react when you walk into a room; right through to the multiple losses at the end. Balancing this - your own feelings, with what's right for your mum at the end of the day is tricky. But somehow we do it.
     
  5. Beate

    Beate Registered User

    May 21, 2014
    11,746
    Female
    London
    How often are you visiting her now? What would be different to that when she is in a care home? At least she will be safe, properly cared for and have other people for company. People who are incontinent and have falls really shouldn't be left alone, only with carers popping in now and then. A care home will be in her best interest, and it will relieve you of your worry so you're not doing anything bad to her, you're helping her by putting her in the best place available.
     
  6. susy

    susy Registered User

    Jul 29, 2013
    801
    North East
    Is there no possibility of finding a care home near to yourself that she can stay in? Wherever she goes she will be looked after and safer than at home. She will have other residents and care home staff to be around her. Please do not feel bad, I'm sure you are going along the right lines to improve the quality of your mums life.
     
  7. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    I agree with Susy that you best option would be to find a care home near to you. You can at least make sure she is safe and well and take her in odd bits and pieces even if you only stay for 10 or 15 minutes here and there.

    I think a lot of people find that if they are far away from a CH it does make it impossible to monitor and it is quite common that those with the most frequent visitors get a better deal! Sad to say but true.

    it won't matter to her where she is - four walls are four walls but the care quality will really matter and as she declines some places are able to cope better than others.

    It is worth thinking about
     
  8. Augustbaby

    Augustbaby Registered User

    Apr 4, 2015
    10
    Thanks for your kind words, I just feel so alone sometimes.
    I know what needs to be done, but it feels like betrayal, on my part even if it is the best thing for Mum.
     
  9. Augustbaby

    Augustbaby Registered User

    Apr 4, 2015
    10
    Thank-you. I know Mum would hate it if she could see how she is now, and I hate feeling this way.
     
  10. Augustbaby

    Augustbaby Registered User

    Apr 4, 2015
    10
    I have thought seriously about it. However I live 500 miles away, she is frail, and I worry what getting her here would do to her though. It is something to look into.
     
  11. Augustbaby

    Augustbaby Registered User

    Apr 4, 2015
    10
    Thank-you, I'm so glad to have this support. This is such a cruel disease for all concerned
    Perhaps going into a CH won't be as bad as I think.
    I'm not sure what you mean by a care manager. Mum has had transient social workers that set up a care plan with a private care company, then move onto the next client. The only people I could talk to are social services Crisis Team, but I have already been told that if I think Mum needs more nightime care the only option is a CH.
     
  12. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    Of course none of us can tell you when is the right time for a care home, but I have noticed that for many people, when you start to wonder about it, is often a good time to consider it seriously.

    Two things:

    Please know that as much as it upsets you, and I am not discounting that, a care home could be a good thing for your mother. She would be safe and looked after in a way that cannot happen at her current home, unless you get in 24-hour carers. There is a lot to say for peace of mind in knowing that someone is safe, has company, is getting good meals, their medications on time, and that there is help on the spot if other assistance is needed, even if it's not a medical emergency.

    I had to move my mother to a care home on short notice and one thing that would have helped me would have been if someone had said to me: this could work out. So I want to say to you, this could work out. It might or might not be what you expect, but it could be okay. My mother, albeit in very different circumstances you what you describe, is so much better off physically in her care home, that I wouldn't have believed it unless I'd seen it.

    The other item is PLEASE consider a care home geographically as close to you as you can find. It makes life so much easier, I can't even tell you--and I only moved my mother from 100 miles away to 10 miles away. Yes, it was a wrench to uproot her, and I do sometimes suffer a little because of that, but this way I can see her more often, not have to drive a couple hours to get there, am on hand if there's a problem, and can see for myself the care she is receiving.

    One way you can weigh this up is to realistically look at what visitors she would receive in either location, and what kind of care you could provide if she were local to you versus 500 miles away. While my mother will tell you that she misses her friends and if she were only in (her former city), she'd have lots of visitors, in truth there is only one person who might have visited her once a month, and I would still be killing myself with the drive. Those other friends and neighbors she's talking about, are dead or too infirm or just don't exist. Living near me, I can more easily manage her care and she gets at least a visitor a week. I do communicate with the care staff by phone and email but knowing it's only a short drive to go talk to them in person, sign paperwork, et cetera, has its benefits. Plus, by being very "visible" at her care home, I feel that the staff understand that my husband and I are involved in her care. While I feel the staff would do a good job regardless, it doesn't hurt to be a visible presence. This is not always possible and I don't mean you should berate yourself if that doesn't work for you.

    I know it's all very challenging and upsetting, and there are no easy answers.

    Best of luck to you.
     
  13. chrisdee

    chrisdee Registered User

    Nov 23, 2014
    171
    Yorkshire
    #13 chrisdee, Jan 31, 2016
    Last edited: Jan 31, 2016
    In my experience, no one with dementia will ever vote for a care home. They simply do not realise how ill they are, that they cannot cope, or importantly that they have a progressive disease which sadly will only get worse. It sounds as if the time has come and I agree with whoever said that its unsafe for an incontinent person, prone to falls to be coping on this 'assisted' basis. It will not help your state of mind with the constant worry. Nearer to you would be better, or at least somewhere with a reasonably easy train journey. A care home here, very near to the station is constantly full and its far from the best in the area!! Regarding transport, I believe that private ambulances+carer are often the usual mode of transport. Some homes even have their own. Please do what you have to, to keep her safe. Many of us have been there, its not easy for anyone. Thinking of you.
     
  14. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    Agree, my Mum would tell you that she really missed her friends in London but the reality is that most of them had died and we looked after her in her own home until she died. I know which she preferred but she, like most of us, wanted everything and especially and understandably wanted the past and to be well again. I know that she really relied on us and even the half hour journey to London would have been so much more difficult than a 3 minute jog lol

    Nearer to family and a visitor is much better xx
     
  15. nita

    nita Registered User

    Dec 30, 2011
    1,817
    Female
    Essex
    By Care Manager I think Izzie meant the manager of the private care agency who provide your Mum's care. She will have up-to-date information on your mother, gleaned from the notes the carers make and will be able to tell you her opinion. You could also speak to your Mum's social worker as she will be able to advise on moving to a care home, either in her current area or nearer to you, and the funding available, dependent on a financial assessment.
     
  16. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland
     
  17. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,475
    Radcliffe on Trent
    Another vote for moving mum near to you. My mum had become totally isolated in her own home with no family nearer than 60 miles because she could no longer go out and hardly anyone visited. (At that time I was particularly upset with her church; she had been a lifelong member and helped with everything but seemed to be forgotten very quickly.) Managing carers, appointments and so on by phone was a nightmare. She had an emergency pendant but couldn't remember how to use it.

    Once she moved, I could see her more often, stopped worrying about her falling and being unable to call for help, and she could also see her little great grandson.

    It seems disrespectful, but we don't let toddlers have their own way when they want to do something unsafe; you have to think of this in the same way, that's what 'best interests' means. It does not mean giving the person what they say they want.
     
  18. Augustbaby

    Augustbaby Registered User

    Apr 4, 2015
    10
     
  19. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland
    So sorry for you and just happened to see your post now. I think it is time for a CH. You are not doing anything to your Mum except trying to keep her safe and well. Maybe there is CH near where you live. Then she would have you to visit her and keep an eye on her.
    Can you talk to your brother about your worries?

    Keep posting and try to stay well yourself.
    Aisling ( Ireland)
     
  20. Fergie28

    Fergie28 Registered User

    Feb 2, 2016
    5
    It's so difficult, isn't it. My mum went into crisis care today as things have suddenly got worse and my dad who is 89 can't cope. Leaving her behind at the home was the hardest thing I have ever done, but she needed to be looked after and safe, and I hope so much that that is what will happen in the home. I can only sympathise and wish you well, and good luck with your decision. Yes it feels like betrayal, but you have to hope it is an improvement in your loved one's care. The very best wishes X
     

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