I'd be grateful for any suggestions please

Discussion in 'I care for a person with dementia' started by Mother goose, Jan 10, 2015.

  1. Mother goose

    Mother goose Registered User

    Jul 5, 2012
    247
    Co.Sligo, Ireland
    My mum has been in NH for 4 weeks now & looks so much better. She is eating at the right times & not staying in bed all day. She doesn't want to join in when residents do activities & then goes to her room. I was visiting every day, but couldn't physically continue, as I was away from home 2 to 3 hours each time. I also help my daughter with her baby & 4 year old & look after a families 3 young children 1 day a week. I now visit her every other day & she never says, why didn't you see me yesterday. Her memory is very bad but as she's in a proper routine, she is now more alert & a bit more aware of what's going on.

    It's great to see her like that, but she is asking me every time, when is she going home. If she went home tomorrow, she would go back to staying in bed all day for 17 hours & refuse to get up, not eat or drink in that time. Then would only eat crisps, cake, choc & drink wine. She isn't aware of danger anymore & would climb onto furniture to reach for things & leave frying pan on & walk away etc. There is no way I could let her do that again or have the worry of her back home. It's just very hard to know what to say to her each time she asks me. If we told her she's there to stay, she would understandably react very badly. She's physically fit & as her memory is bad, forgets every time we tell her anything. So she thinks there is nothing wrong with her & should be going home. I'd be very grateful for any suggestions please
     
  2. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,984
    Cotswolds
    #2 Rageddy Anne, Jan 10, 2015
    Last edited: Jan 10, 2015
    This is what I dread too, so I can't advise from experience, but would suggest that with mum not remembering things you could perhaps manage with vague promises, like .."I'm sure you'll be able to go home soon, when the doctor has finished his/ her checks on your health"...She lives in the present now, so perhaps she won't realise that time is passing and you've said the same before.
     
  3. Owly

    Owly Registered User

    Jun 6, 2011
    538
    It's possible that when you are not there, she is not thinking of home at all. But when you arrive, it is a sudden reminder that there is another world out there, and another place that she used to live in.

    If you visited less often, though it might feel bad for you, it might be better for your Mum and help her to settle and treat the NH as her new 'home'.

    Ideally, for her contentment, she will forget there ever was another home, because you are never going to persuade her that she is safer where she is.
     
  4. Katrine

    Katrine Registered User

    Jan 20, 2011
    2,839
    England
    #4 Katrine, Jan 10, 2015
    Last edited: Jan 10, 2015
    MIL has been in care for 20 months. She tells us, in her own very garbled way, that she is happy. The sense of the jumbled sentences goes like this:

    I am comfortable, warm and relaxed (Relaxed! She never could relax. Her nickname as a child was Old Worryguts)
    There is structure to each day which stops me from being agitated
    I don't have to seek out purposive activity because this is provided
    If I get bored with an activity, or don't understand it, I can just wander off and be alone for a while
    When I start to worry about where I am and why, the staff put me back on track
    This stops my anxiety from developing and I can forget about needing to know what's going to happen next
    I trust my caregivers, they are kind to me and I often have fun with them
    I only vaguely remember who my family are, but it doesn't bother me because, when I see them, then I do remember them during the time they are visiting.

    However, when we visit she rushes over like a small child and physically clings on, saying "Oh, I'm so glad to see you. Thank goodness you've come to take me home."

    I think it is an emotional reflex. I don't think she'll stop doing it. The sight of a close family member is so linked with the fantasy of 'home' - that imagined safe place where everything will be OK again and the faces around you will be familiar.

    We say "We've come for a cup of tea / lunch. Would you like to join us?" This triggers the social reflex and it's possible to distract her with chatting, or an activity. My advice is just not to answer the question at all. You won't be able to give a direct answer that is reassuring.

    It is torture for you, but she will soon forget. The blessing of poor short-term memory is that there is only a short gap to fill before the distraction takes the place of the question. It doesn't work for everyone, but the more relaxed your mum becomes, the easier it is to give her a pleasant 'now' in place of an anxious "what now?"
     
  5. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,984
    Cotswolds
    Katrine, that's so insightful.

    My husband has started saying occasionally, and only after dark, that he wants to go home, and WE ARE AT HOME. So I think the notion of wanting to go home is more a wish to turn the clock back to a time when everything was familiar and understood.
     
  6. Katrine

    Katrine Registered User

    Jan 20, 2011
    2,839
    England
    #6 Katrine, Jan 10, 2015
    Last edited: Jan 10, 2015
    Yes, I'm sure you're right. This seems to be a familiar problem for many carers who are trying to help their LO with the anxiety of not understanding, and loss of control. And BTW, isn't MIL a wise old woman? If you heard her it probably would sound like gobbledygook, but when you know the person well you can discern their meaning. She hasn't lost her intelligence. How can that be there when she understands so little, and remembers less? The human brain really is still an unexplored world.

    For some people of faith, 'take me home' can also mean 'Take me home to Glory'.

    In the earlier years of her illness my mother used to say endlessly "Why doesn't The Lord take me home? It's not fair. I don't want to be here. I keep asking Him but He won't take me". The answer was, in her case, "You are not ready. There are still things He needs you to do."

    She didn't particularly like that answer, but it was the truth. She had hurt several members of her family and we needed time to forgive her, and to be able to show her our love, once her prickly defensive barriers came down and we could see the generous, wise person within.

    If I am granted the privilege of being with her at the very end of her life, I know that I will be able to tell her that it's time to go home. For her, because 'home' has this specific meaning, it's a word that I avoid when talking to her. I don't think she really understands that she is living in her own home. Sometimes she tells her carers that "this used to be my house". Oh, how very true. :(
     
  7. Sweet

    Sweet Registered User

    Jun 16, 2014
    72
    I found your post comforting katrine.

    I have just got home from visiting my mum in the CH with my daughter. Mum was asleep in her room (often is). Seemed pleased to see us, but we just could not have a conversation with her as she's not able to keep it going or really relate to anything. We stayed only 20mins.

    I came away feeling guilty for such a short visit. My daughter said I'd left her 'happy', not agitated or upset so I shouldn't feel down about such a short visit. She's with familiar people and I shouldn't feel guilty. Problem is I do, always trying to make it better, but I cant.
    So reading katrines post puts a positive perspective on it. Thank you!
     
  8. Solihull

    Solihull Registered User

    Oct 2, 2014
    97
    West Midlands
    My mum has been in a care home since September and at first I visited every other day and was met with "oh you are here, we can go home now" on every visit although I was told she was totally relaxed when I was not around. After being advised to cut the visits down so that she is not "waiting" for me, I visit about every 4-5 days. She now welcomes me to "her home" and only occasionally asks the question. Yes, cutting down visits gave me more guilt but has helped us all in the long run. When you know there is NO alternative you must stop punishing yourself. I am getting there slowly. My thoughts are with everyone xxx
    Sue
     
  9. Insomniac

    Insomniac Registered User

    Apr 29, 2014
    39
    Such wise words!! I was always so angry all the time because mum was so difficult when she was at home. I didn't even think about it till I read this, but I think I'm starting to like her more since she's been in the CH! It's certainly not easy, but it is better.

    When she mentions about going home I sometimes say something like 'oh maybe in a while' or 'well we'll see what we can do' and mostly that seems to pacify her.

    Lots of good advice here (what would we do without TP?).... My daughters tell me all the time mum's happier, I do enough, see her enough etc. but god we really put ourselves through the mill with guilt don't we? I wish someone could come up with a solution to that one.


    Sent from my iPhone using Talking Point
     
  10. Solihull

    Solihull Registered User

    Oct 2, 2014
    97
    West Midlands
    Before Mum went into care she used to phone me late at night and ask when she was being picked up to be "taken home". She was sitting in her house where she had lived for 56 years so yes "home" is not necessarily where we think but a safe & contented place somewhere deep in their memory.
    Sue
     
  11. Mother goose

    Mother goose Registered User

    Jul 5, 2012
    247
    Co.Sligo, Ireland
    Thank you all for your very helpful replies.
    That's what I have been saying to my mum, Raggedy Anne. A few times I've said, the Drs' are assessing your medication & it will take some time, which she did accept for a while.

    I have cut down on visiting, Owly. As she's eating & sleeping properly now, is more alert & aware. She has asked NH to ring me on 3 occasions, so she can speak to me. On the 2nd call she said, I'm bored here, do you know when I can go home? Told her, I'd be in next day & we'll talk about it. When I went in, she said, I didn't know you were coming in today. Still did ask me about going home later.

    Katrine, that's exactly how my mum reacts, when I visit her. Your MIL sounds an amazing lady & you obviously are a great help to her.

    Some visits to my mum, I have to make short too, Sweet. My mum has no conversation either. I end up chatting to the other residents, hoping she will join in, but never does at any time.

    Yes Sue, my mum has said, similar things to me. It was, thought I was going home with you today. If my husband comes with me, she then thinks we've come to take her home.

    My mum actually looks so much better since being in the NH, which I'm so happy to see. At least we all know that our mums, dads, husbands, wives are all safe & well cared for in the NHs. I agree with you Insomniac, the guilt is very hard to deal with.
     
  12. Mother goose

    Mother goose Registered User

    Jul 5, 2012
    247
    Co.Sligo, Ireland
    How did your Christmas day go, Insomniac? You were going to a restaurant with your mum & family & we did the same with my mum. I hope it went well for you all & that you enjoyed the day.

    I collected my mum from NH at 11am & she thought it was Christmas eve. She fell asleep almost straight away, on the 20 min journey to my daughters. Had to wake her up & my daughter gave her a glass of wine being Christmas day, my mum had 2 sips & was asleep again. We went to the restaurant & my mum slept through most of the meal & I had to keep waking her up between courses.

    She does love her sweet things though & when dessert was put in front of her, she opened her eyes, then closed them. After a few minutes, I said, Mum if you don't want it, the boys' will eat it. It was funny, as with that she woke up & ate everything on the plate & said, I really enjoyed it. We took her back to the NH later that eve & she said she really enjoyed the day. I felt quite sad that she seemed to miss most of it being asleep, but maybe she just relaxed.
     
  13. Owly

    Owly Registered User

    Jun 6, 2011
    538
    Maybe, to help the conversation flow, you could take in a book like this one that I got for my Mum - Remember When. It is full of pictures of things from former decades and was fun for me to look at (my old toys!) as well as for her. The last thing my Mum looked at before she died was another old book with pictures from the 40s that she was able to read a few words out of. She found it quite engrossing.

    http://www.amazon.co.uk/Remember-Wh...243&sr=8-1&keywords=remember+when+robert+opie
     
  14. Insomniac

    Insomniac Registered User

    Apr 29, 2014
    39
    Christmas Day went very well Mother Goose. We went to CH around 1 and mum opened her pressies before we left for the restaurant. We were out about 4 hours and Mum ate well and had some wine. She doesn't say much these days when we go out, and any conversation is a bit like Groundhog Day, but I think she's just happy to be around us. No problem taking her back and she was happy to go and sit in the lounge with one of the other ladies. We have our ups and downs, but on the whole she's settling much better now , or maybe it's just more of an acceptance. We've taken her out a few times now and have never had any bother. I (or someone) pops in every 4 or 5 days - I don't think I could manage more than that tbh but I do feel a bit guilty not seeing her more often. Having said that she doesn't remember when we've been anyway!

    Things are infinitely easier than when she was at home and now I don't have all the day to day worries to concern me. Once her house is sold hopefully life can get back to normal!

    Glad to hear your day went well. I'm sure things will get easier over time. My mums probably been in around 10 weeks now and i never imagined we'd get to this stage when we first moved her in.



    Sent from my iPhone using Talking Point
     
  15. Mother goose

    Mother goose Registered User

    Jul 5, 2012
    247
    Co.Sligo, Ireland
    Thank you Owly, for giving me the name of the book that you recommend. I live in Ireland, so not sure if I can get it here. Maybe I can order it, from our local bookshop.
     
  16. Mother goose

    Mother goose Registered User

    Jul 5, 2012
    247
    Co.Sligo, Ireland
    I agree with you, Insomniac, that it is easier now, than when my mum was at home.
    I had to tell her what she should or shouldn't be doing, I really found that hard to deal with. She would never listen to me or my husband & every time would always do the opposite to what we asked her to do. My brother lives in England & I don't have any other siblings. My husband & my daughter have been a great help too, but they didn't have to tell her what to do. I found I was getting uptight & so stressed out & not able to cope. I have an auto immune condition which can affect every part of the body & stress makes the symptoms worse.

    Now my mum is in the NH, I feel more relaxed & know & she's well looked after. I don't have to tell her to get up after 17 hours in bed, when she'd previously refused & most importantly I know she is safe. I spent many days, worrying that I'd go in & find her electricuted or at the bottom of the stairs. Now she is in a proper routine & looks healthier, I hope we can have the relationship, we used to have as mother & daughter.
     
  17. Mother goose

    Mother goose Registered User

    Jul 5, 2012
    247
    Co.Sligo, Ireland
    #17 Mother goose, Jan 16, 2015
    Last edited: Jan 16, 2015
    I worry about my mum & worry even more after my son-in-law had a serious car accident

    We had heavy snow here, tuesday & wednesday. My daughter's husband left for work at 8 am, wed morn & she got a call from him shortly after, to say he'd had a serious accident, thank god he wasn't hurt. The road he was travelling on, doesn't get gritted & his car skidded, spun around & landed upside down on it's roof in a deep ditch. He was so lucky to get out & not a scratch. I saw the way the car was laying, I really don't know how he got out.

    Same day my daughter had an appointment at a hospital an hours drive away, to get results of an MRI scan she recently had done. She gets headaches every day for the last year & some are so bad that she cries with the pain.I I help her with her 2 young children, who are 1 & 4 yrs old, when she needs it. Her husband was going to take her, but couldn't get the day off, so my husband was driving her there.

    They all left at the same time, after leaving their baby with me. A short while after, they rang to say her husband had the accident & went straight to him. Understandably, he was in shock as my daughter was & us & his parents too. Next day, the insurance company arranged for the car to be taken away to a garage.
    As it was upside down in a ditch, it took a long time to retrieve it. Driver asked my daughter if she was ok, told him her husband was driving. He asked was he alone, as he saw the 2 car seats & said it was a good job your 2 children weren't in the car.

    It upset me so much to think what could have happened, but so thankful he is alright & that my daughter & their 2 children hadn't traveled with him. We heard that some roads near the hospital where she had an appointment, were impassable, so they decided to come back home. I'm so glad they did, as it would've been so dangerous & so worrying. I said to my daughter, the Consultant might not have arrived either, as roads so bad. She now has to wait until March for another app. She said, Mum I've suffered this long & learnt to live with it, so a few more weeks won't make any difference.

    I feel so sorry for her, as having 2 young children, is not easy when getting headaches. She was obviously so worried about her husband, that she was prepared to wait for another app. I worry so much about my mum having alzheimers, my daughter & her family & my 2 sons & their families too. No matter what their age, we always worry about our children, even more so when they're adults.
     

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