Too "aware" to be in a care home?

Discussion in 'Middle - later stages of dementia' started by Jenni_B, Aug 24, 2019.

  1. TNJJ

    TNJJ Registered User

    May 7, 2019
    429
    Also she might need to apply for the AA night allowance..
     
  2. Jenni_B

    Jenni_B Registered User

    Aug 24, 2019
    65
    Female
    France
    They sound very similar indeed! Yep, my sister is cleaning the bathroom floor several times a day and night too. He needs help cleaning himself up afterwards too, but is refusing it so far, even from my sister. She has to take him everywhere with her, including the hairdressers! It's just dreadful. I don't know how any of you cope, truly I don't.
     
  3. Jenni_B

    Jenni_B Registered User

    Aug 24, 2019
    65
    Female
    France
    Thanks. I was just reading about those on another thread. I'll have to ask my sister. Not familiar with the name but it sounds like something I think they may have tried. If so, it didn't work, unfortunately.
     
  4. Jenni_B

    Jenni_B Registered User

    Aug 24, 2019
    65
    Female
    France
    Yes, she has the full AA.
     
  5. canary

    canary Registered User

    Feb 25, 2014
    10,524
    Female
    South coast
    Honestly, @Jenni_B , Im thinking that he is less aware than your sister thinks and is using strategies like keeping your sister in eyeballing range to try and make sense of his world. He needs constant reassurance and is looking to your sister, but he could well be OK with other people around. When you go away on holiday with them, try getting your sister to really pop out for a while and see whether he will accept you telling him that this is what she has done.
     
  6. Tiller Girl

    Tiller Girl Registered User

    May 14, 2012
    91
    Jenni

    I’m in a very very similar situation to your sister so I know exactly how she feels. I have also toyed with getting respite but I chicken out every time. My daughter even offered to have him for a few days and I declined that. My OH is 74 and I’m 66 so similar ages too. My OH would be incapable of living on his own although he thinks there’s really nothing wrong with him. He doesn’t drink or eat unless I give it to him. He can’t shave anymore and has a shower under duress!

    A few years ago I introduced him to Millie Marrotta’s adult colouring books. I sat with him with coloured pencils and we completed the pictures together with a book each to start with and then slowly progressed to just him colouring them alone. Now he will sit all day , everyday just colouring. He can also do small jobs like washing up....not very well and he likes to ‘look after the dogs’ so he’ll sit with them if I need to pop to the shop. I have a small whiteboard that I leave messages on so he knows where I am. I usually include an instruction or a time I’ll be back ...depends really as every situation can be different.

    However.....and this sounds really bad but I’m sure people will understand, last year my OH heart consultant gave him 2to 3 years to live or sudden death. So in a way this has made me feel that I should make his remaining years peaceful and comfortable. I’m sure that if I did have respite in a care home it would see him off to be honest and I don’t want it to be like that.

    If he didn’t have the serious heart problem then I think I would consider having respite every few months or however regularly I felt the need for it because I would see the future as very bleak. As my daughter keeps telling me ...I need to think of myself too. That’s hard but also very true.

    If you think your sister would benefit by speaking to me personally please contact me and we can maybe arrange contact via social network etc
     
  7. mickeyplum

    mickeyplum Registered User

    Feb 22, 2018
    94
    Reading about your sister's situation was as if you were describing mine. My husband would have to be in a strait-jacket to get him into a home, and then he'd escape.
    The difference is, I am 85 and my husband with vascular dementia is 91. I've sometimes thought how much easier if would be if we were both younger. I would have so much more energy and patience and be in better health myself.
    But then I've realised how much harder it would be in other ways. Your sister is still a young woman by today's standards and should be enjoying a full life instead of being worn into the ground as a carer. I've already had that full life with my husband and as boring and arduous as my days are now, I don't feel like life has passed me by. Yes he can only walk slowly but it doesn't matter because I actually am only able to walk slower than him.
    Our TV viewing is limited to the news, which I follow but he doesn't, boring Westerns which he always loved but now I have to explain the plot as it goes along, and his never-to be-missed quiz show Tipping Point. He knows nothing about the format but loves to watch who is winning and if they hit the jackpot.
    All this info is no use to your sister. I'm really sorry about that. I just wanted to say how much harder it must be for her than for me. I do wish her well and admire you for your loving efforts to try and help them both
     
  8. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,068
    Yep Mums incontinent, has been for years!
    Unable to cook or clean, can’t be bothered to shower, yet she is deemed capable & doesn’t like to be told what to do.
    The paranoia & hallucinations are still present but even a low grade UTI sends her off her legs. We lurch from crisis to crisis- it’s not nice but it is what it is!
    Mums had hospital admissions several times, a falls risk ( thank god she’s got soft bones!!!) & bitterly complains about not being able to go any where- yet won’t socialise with ‘old people’!
    She won’t attend memory cafe/ clinic, it’s a consultant or nothing.
    Mum now talks about me looking after her & her moving up closer to me! Until I get definitive diagnosis & care sorted that’s not going to happen!
    Just because my Great grandmother lived with her as a child she thinks I’m going to look after her !
    Um ..... no!
    My Mum didn’t move my Granny or Grandad in with us, infact I was a child carer after school & during holidays. Yes my Mum needed time away alone or with my Dad. Meanwhile I slopped out, & did things no one under the age of 16 should have to do!!
    I’ve been a dutiful loving daughter, but the stress on my marriage is showing. My kids are fed up with me running around after her & now my health is in decline!!!
    Mums 88 - she will have to live with the consequences of her decisions until a time where the safeguarding we put in place isn’t thrown back at us!
     
  9. Lawson58

    Lawson58 Registered User

    Hi Jenni,

    I read your first post and your description of your BIL and I don't think he is 'aware' in the way you perhaps think he is. I believe he is in total denial of his problems and his condition but if he is unable to converse or do much for himself and from your other description, then that is a different thing entirely and is the default position of many people with dementia.

    My husband has been declining slowly since his diagnosis over five years ago but he he still plays bridge, Skypes his siblings in the UK, can prepare simple food and takes care of all of his personal hygiene. There are many things he cannot do but I would have to say that he is still quite aware and I couldn't even think about care for him. Respite for me would be wonderful but he certainly sounds far more competent than your BIL.

    Of course, BIL is going to resist respite but this is an issue about your sister's well being and this makes everything so hard for everybody. I guess it comes down to the difference between needs and wants.
     
  10. AliceA

    AliceA Registered User

    May 27, 2016
    2,404
    Every age brings it own problems, I empathise with Mickyplum. But I sympathise with younger people too.
    In my experience of having a respite together, my husband saw it as a holiday, I was able to have a room away from the bustle but I observed. My own husband settled in to the routine and was happy to have a flock of people caring from him. The activities are not about folding towels, but more art, music, animal visits even discussion about what is in the papers. There was a lot of laughter and genuine caring.
    We must not imagine we are the person going in, so I agree grand hotel types appeal to the family more than the needs of the person warrant.
    I am in the same position but I need to find a place near so I can visit and the backing of SS as we cannot self fund fully while I need a roof over my head. My husband seems very aware one moment but not another your BIL sounds the same. I must get back on duty, my daughter has kindly come in so I could sleep, I had a very broken night and a very busy morning. It is just too tempting to stay put.
    I used a trick from when I had teenagers, I put soothing music on loud enough to block the sound from the rest of the rooms.
     
  11. Jenni_B

    Jenni_B Registered User

    Aug 24, 2019
    65
    Female
    France
    Wow - so many replies, I can't thank you all enough. You're an amazing bunch of people.
     
  12. Jenni_B

    Jenni_B Registered User

    Aug 24, 2019
    65
    Female
    France
    What you say about his awareness makes sense, and this is a good idea. I will try this. Thanks.
     
  13. Jenni_B

    Jenni_B Registered User

    Aug 24, 2019
    65
    Female
    France
    So sorry to hear all this, Tiller Girl. Without wishing such situations on anyone, it's nevertheless helpful to find others in a similar situation, if that makes sense & doesn't sound awful. Your reason for not wanting your OH to go into respite care is totally understandable.

    Great that the colouring books work! If only my sister could find some activity that would keep him amused when bored, so she could get on with something else for a while - even paperwork. I think, in fact, she tried the colouring books some time back but either he couldn't manage even those or else decided they were "silly" too. Might be worth another try now, because he will most likely have forgotten the last attempt and could be more receptive now. However, drawing or art was never his thing in the past. I know you don't need skill per se for these colouring books, but I do wonder if it's harder for PWDs to take up something they've never done/had natural ability for in the past? There's no unconscious hard-wiring, if you like, to draw upon, and now it's too late to learn something new, even if it's simply colouring within lines & doesn't matter if you mess it up.

    In his youth, my BIL played rugby so I think he must have had good hand-eye co-ordination. Sometimes, these days, he doesn't see what's right in front of him (thinks his plate is empty when there's still food on it, or can't see the dog that's on the end of the lead in his hand). But at other times he can surprise you. Last time I was over (May), we were walking through woods with the dogs. One of them loves to run after a ball and my sister has one of those ball-throwing thingies. Although BIL would lose track of where the ball landed, and not see it or think to pick it up if the dog dropped it at his feet, he was mostly very accurate at launching it from the gizmo. Even when the track narrowed, with deep vegetation either side, he managed to aim the ball straight down the track. So I wonder if that's because he doesn't have to think how to throw - he isn't learning a new skill. (Am not sure if they use this in the garden as well. Will check.) I may be talking rubbish of course - it might just have been a good day.

    And thank you for your very kind offer for my sister to contact you. I'll ask her, although she has never been one for forums or social networking of any kind, so maybe don't hold your breath! :)
     
  14. Jenni_B

    Jenni_B Registered User

    Aug 24, 2019
    65
    Female
    France
    Crikey. That's all very tough. Good for you standing your ground. The psychological blackmail, conscious or otherwise, is another very hard thing to cope with, it seems to me.
     
  15. Jenni_B

    Jenni_B Registered User

    Aug 24, 2019
    65
    Female
    France
    I think you've hit the nail on the head with Needs versus Wants. :)
     
  16. Jenni_B

    Jenni_B Registered User

    Aug 24, 2019
    65
    Female
    France
    Very moved by your words. Thank you so much, mickeyplum. Wishing you all the best.
     
  17. Jenni_B

    Jenni_B Registered User

    Aug 24, 2019
    65
    Female
    France
    Alice, I was reading your thread in the Tea Room, from the beginning, earlier today. Your description, there and in your post here, of the time you spent with your husband in respite is very heartening.

    I think it may be a question of my sister trying to find the right care home - which may be challenging because I think of the 18 I telephoned a few weeks ago (on a basic fact-finding mission, not to actually book anything), only one had a room available at that time. And of course they can't take advanced bookings, as it were, because they don't set rooms aside specifically for respite (at least, none of those I spoke to did - understandable from a business perspective).
     
  18. Jenni_B

    Jenni_B Registered User

    Aug 24, 2019
    65
    Female
    France
    @AliceA By the way, thanks for this useful reminder. "We must not imagine we are the person going in, so I agree grand hotel types appeal to the family more than the needs of the person warrant."
     
  19. Lady M

    Lady M Registered User

    Sep 15, 2018
    289
    Female
    Essex
    I think both OH and I need some respite! Unfortunately we are not self funding, and I am having difficulty with SS. Unable to contact on previous named SW number so rang on duty office...as OH has maximum calls and we live in ‘assisted living’ facility....no one seems to care ...! haven’t had any responses!
    The care staff here are really good but I feel the mental stress and constant worry are now overwhelming!
    My home is not my own and my life is non existent but like stated here my OH is quite ‘ with it’ in his own surroundings.....
    A few hours isn’t what I am looking for I am thinking a few days and nights!!!! To recharge!
    Anyone know if something like this available through the SS.
    Thanks in advance!
     
  20. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,006
    Yorkshire

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