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  1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

First thoughts on visiting my wife in residential care

Discussion in 'I have a partner with dementia' started by northumbrian_k, May 25, 2019.

  1. Jintyf

    Jintyf Registered User

    Jun 14, 2013
    46
    Just to say thinking of you and good luck tomorrow. Try to get a good sleep. Tomorrows the start of the new normal. I'm in Scotland too:)
     
  2. LizzieM

    LizzieM Registered User

    May 6, 2019
    24
    Dear Wifenotcarer, I don't know you (obvs) but I just want to send you a huge hug and a whole odd mixed heap of 'keep strong' and 'cry if you want to'. Despite what you might think to yourself in a dark moment, you will have done your absolute best. I suspect this milestone is coming over the hill for us too. I salute you. xx
     
  3. AliceA

    AliceA Registered User

    May 27, 2016
    2,252
    I have been reading these posts but not posting. I feel for you all. What a tough situation we are all in. Xxx
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,137
    Kent
    It`s the worst time I know. I truly hope you will eventually know it was the best decision for both of you.
     
  5. SoAloneIn Suffolk

    SoAloneIn Suffolk New member

    Jul 9, 2019
    6
    Gosh, it sounds like she's doing really well! I think frequency of visit might depend on whether she recognises you and how long the memory of your visit is likely to last. The worse it is, the less frequently I would go. But of course it depends on how you feel..

    I am in the unfortunate position of having both my wife and mother with dementia, and to be honest once my mother stopped recognising me or even my name (I have a very unusual first name!) I stopped going. It was only upsetting me and I have enough on my plate with coping with my wife.

    My mother, who is now 93, doesn't recognise any of her children and last time fought with two siblings when they were trying to help! Would you believe it, while her brain is decaying, the rest of her system is as fit as a fiddle...she takes no medication of any kind!
     
  6. MoodyC

    MoodyC Registered User

    Sep 22, 2018
    31
    Hello to you wife not carer, I do hope the day went as best as it could for you and you had something special to do after you left the home.
    Today we have both been very brave. Yes, my OH went in for respite but at the moment I don't know if he will be home again. Your description of numbness as you labelled, packed and put a show of calm was going on here too. Except the packing was going on in secret as I had been told not to tell him. I had grave misgivings about that but actually it turned out fine and the manager rang to say he had actually played ball games (never has before!) and chatted with the residents. So there he is having fun whilst I feel heavy of heart and wondering how life will be.
    The last six months have been ones of increasing violence, hallucinations, wet carpets and sleepless nights.
    I am sure that we can tell ourselves we have done the very best we can and deserve a break. This afternoon I actually went out for a walk. The first one for a year.
    Very best wishes to you.x
     
  7. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    223
    Central Scotland
    Hi MoodyC Very Best Wishes to you too. I entered the home with OH with my stomach churning like a washing machine on spin, thinking I was going to be sick or pass out. However the staff were lovely and so welcoming that within 10 minutes I had relaxed and was laughing and joking (as was OH) while we went over all the personal details, medication, daily routine, etc. His room is lovely with a view through the gardens and up to the hills beyond. It seems very spacious, has a 'hospital' bed with a remote to tilt the top end for sitting up or getting out of bed and an en suite wet room with WHB, WC and walk in shower. The senior carer already had lots of information about OH with reports from his respite stays and from the carers who have been coming morning and evening for the past two months. Because it is in our own village, our own GP regularly visits and is 'on call' for the home and our usual Health Visitor will come there to administer OH's 3 monthly vit B12 injections. OH had scotch broth followed by Haggis Neeps and tatties (both favorites of his) declined trifle and promptly nodded off while we finished the paperwork. I had to zoom off to Council HQ to sign an agreement to pay the (gulp) monthly charge but OH let me go with no fuss and a cheery 'see you tomorrow', as he went off on the guided tour and to meet his fellow residents.

    I did a small week's shopping for one (half the usual price) and then home to catch up on some sleep. This evening I went out for a meal with Daughter#2 her husband and our granddaughter, then home and ready for an early night. I'll go back tomorrow to take his wee TV and his breathing and purring kitten. One of the other residents in the unit stopped by for a chat with her 'toy' cuddly cat and is anxious to see the kitten and has promised to help OH care for it. All is well and calm.
     
  8. MoodyC

    MoodyC Registered User

    Sep 22, 2018
    31
    Good morning! Great news and what a relief for you! As you say, time for some rest. At least you know he is safe and what sounds like a friendly place. It's all going to take us time to adjust. At least you know he's there. In the meantime, I still have to see how it goes and sort out the finance. I hope you are able to give yourself some days off. xxx
     
  9. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    718
    Male
    Newcastle
    My wife was in a good mood today, although staff said that she had been pacing most of the day and asking for me again. This seems to go in cycles. She sat down for most of the time I was there - in the garden, her room and the lounge - and we had a conversation of sorts. I said something, she came up with a total non sequitur and I agreed with whatever she said.

    She counted the fingers on both hands and seemed happy with the tally, then repeated the exercise and expressed satisfaction. She used to count her rings, but now all but one are safely locked away, counting of fingers seems to be a good substitute. She used to count ornaments at home, as well as money until she stopped recognising the notes. What she is counting seems to matter less than the pleasure she derives from the act of counting. Little victories.
     
  10. nitram

    nitram Registered User

    Apr 6, 2011
    18,830
    Male
    North Manchester
    Any chance of a money box type of thing.
    Count (safe for children) tokens in, tip them out, count, count them in again, repeat.

    Nothing fancy, you could try playing a game with her.
     
  11. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,034
    Female
    Chester
    or an abacus - google children's counting toys
     
  12. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    223
    Central Scotland
    Social Worker phoned to invite me to the 3 week review. She said that reports from the home indicate that OH has settled well, is indeed 'the perfect resident'. Friends, Daughters and now our Grandson who have visited have all had pleasant visits with OH pleased to see them and happy when it is time for them to go.

    Not the same on my visits. Trying to converse is like pulling teeth. My attempts to show affection via a cuddle, handholding or (heaven forfend) a kiss! have all been rebuffed. Things came to a head yesterday. Apparently he had heard Grandson talking to one of the carers, telling her that we are all off for a week's holiday. This is true. Before the Care Home place became available, OH was booked for a weeks respite for the holiday. His Choice after much discussion. We are going to a rental house in the Western Isles, where we have gone as a family for 10 years. The last two years OH has not wanted to make the trip mainly because it involves either a 5 hour ferry trip or a flight in a small plane. Last year he moaned the whole time, would not attend any events or go to the beach, forcing me to stay with him in the house, while the others enjoyed themselves.

    Anyway, once we were alone in the home he launched a tirade of venom, accusing me of being 'off to Ireland chasing men' and that I had had him locked up so that I could go gallivanting. Then our younger daughter arrived and I thought he would revert to his usual affable self, but no, she was also accused of 'always being on your Mother's side', plotting against him, etc. etc. When she quietly pointed out that he had 'chosen' NOT to go, he denied this saying HIS choice was for us all to stay at home to look after him. She suggested that this was a mite selfish, he exploded with anger saying that I was the selfish one, who was shuttling him from pillar to post to suit myself.

    Daughter was very distressed as she has never seen him like this before. He has only ever had these outbursts when alone with me. Thankfully, a carer popped her head in to announce Tea and he immediately turned on the charm with her. We left without a goodby or anything. I know it is the illness, not his kind and loving self, but feel that the long awaited break has been ruined before it has started.
     
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,137
    Kent
    It was the same with us. My husband never took his frustration out on our son and he always knew him too.
     
  14. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,839
    Nottinghamshire
    Don’t let it ruin your break @Wifenotcarer

    You know your husband wouldn’t enjoy the holiday and would ruin it for you too. I hope you all have a lovely break.
     
  15. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    223
    Central Scotland
    5 minutes until we set off and I am so hurt by what he said that I am determined to have a great time just to spite him.

    BTW I know this is not the way to take it and the cursed Dementia is to blame but it is how I honestly feel ATM.
     
  16. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,416
    Female
    England
    Please don’t let it spoil your holiday @Wifenotcarer.

    Your husband is safe, settled and being looked after. Just go and enjoy your holiday and make some new memories. Don’t mention the holiday to your husband when you return and if he mentions it try some diversion. I would also ask the staff not to keep reminding him you are on holiday if he asks where you are.
     
  17. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    718
    Male
    Newcastle
    I agree with you @jaymor. After a lifetime of going on holiday together, my wife could well be upset to hear and be reminded that I am still having holidays but am not taking her with me. In her care home there is a stock response to "where's K?", which is that I am out on my bike. This is so familiar and something that I have always done without her that she accepts it readily. It doesn't stop her asking again a minute later. Or saying "you are always out on your bike" when she does see me!
     
  18. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    718
    Male
    Newcastle
    #58 northumbrian_k, Jul 23, 2019
    Last edited: Jul 23, 2019
    "I thought that with her hats she was just naturally eccentric" said a neighbour and casual acquaintance when I updated him after he stopped his car to ask about my wife's whereabouts and welfare. It was nice of him to notice that she hasn't been with me recently and to take the time to ask.

    This evening I met a former work colleague outside his house. He asked after my wife, who he has known since 1975. Having no reason to expect this, he was rather shocked when I told him that she is now in residential care. On the few occasions that we have met in the last 5 years he seems to have had no inkling that anything was wrong, that she might have dementia, or that it could have progressed so far.

    When one is so wrapped up in dementia's daily demands it is easy to forget that to the outside world things can look entirely normal.
     
  19. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    371
    Female
    Basingstoke, Hampshire
    That is so true. Even with family, not necessarily entirely normal, but they don't always see it as it is. I think PWD do put on an act when in the company of others.
     
  20. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    718
    Male
    Newcastle
    #60 northumbrian_k, Jul 24, 2019
    Last edited: Jul 24, 2019
    "He is a canny lad really" said my wife after we had indulged in some light-hearted banter this morning. We'd been into the garden to see the little girl that she likes and get the wind spinner to spin. She was hot but wouldn't take off the jumper she was wearing. She must have done earlier when she had a bath. We talked about the planned barbecue at the home on Saturday and she asked if we could come too. Then it was time for lunch. She was as happy as I have seen her in a long time. I should be feeling happy too.

    Snapshot - 4.jpg
     
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