1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    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.

Today I feel shattered after visiting my husband in a care home.

Discussion in 'I have a partner with dementia' started by Bugsbunny4, Dec 17, 2015.

  1. Bugsbunny4

    Bugsbunny4 Registered User

    Nov 6, 2015
    80
    Yorkshire
    My husband went into care early November. He was very unsettled at first but his medication has been gradually reduced and he seems more settled and less sleepy and confused.
    This last week has been a good one for him with respect to how settled and relaxed he has been.
    However what a shock I had today. He was very lucid indeed. Wanted to know what he was doing there, asked why he can't come home and then proceeded to ask why he had been kicked out of his home.
    I explained that he hadn't been kicked out of anywhere, he agreed to go for a week into respite after an incident at home when he became physical with me. I went on to remind him about his behaviour in respite which resulted in him being taken to hospital. He said he had made a mistake and never intended things to turn out like they have.
    He said he can't live without me, and I have no idea how it feels to be left all alone with nothing to do. He said he is going to ask our sons what they think.
    He says he loves me so much it's painful and he needs to spend all of his time with me.
    At some point I tried to explain that on my own I couldn't look after him as well as he is being looked after at the moment.
    Of course he thinks I can do a better job.
    I feel like I have been pulled through a hedge backwards and am beginning to question myself if he isn't in care when he doesn't need to be.
    My head is thumping.
    Is there anyone out there who can identify with this. ?
     
  2. MrsTerryN

    MrsTerryN Registered User

    Dec 17, 2012
    773
    Bugs mum improved so much after dad died /she went into care. Dad diedone day mum in care next day
    I did question myself at the time about the nursing home (mum thought the nursing home appropriate for her)
    I wrote myself a list of reasons why she had to be in care and why care was initially done.
    Now 18 months down the track mum has deteriorated and I am so grateful that she is in care.
    I still have the list
     
  3. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,958
    Your heart may say a move home MIGHT work; your head will know it can't. Hopefully your husband will forget this "wobble" very quickly.

    Dad still wants Mum home, regardless of recent hiccups like him being very ill himself over the last 3 weeks and longer term issues like the sheer impossibility of providing care 24 / 7 and of keeping a doubly incontinent person clean when there's not enough room in the loo to reach all her "bits".
     
  4. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Hello bugsbunny, l sympathise with you, my hubby thinks l don't want him anymore, l visit once or twice everyday as he misses me so much, shen l am not there he wanders about looking for me, when l leave he runs after me l have to hide in the care managers office until they distract him, it is heartbreaking everyday is a nightmare, it upsets me, it was the hardest decision l have ever made to put him into Care, l just could not look after him on my own anymore. Hopefully things will get better in time. You must take care and look after yourself or you will be ill.
     
  5. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    427
    I totally identify with your feeling, even though my husband isn't as lucid as yours - his dementia is quite advanced. He thinks now that he built the care home (he was a builder) and that he is there doing work, and he also sometimes thinks I live there as well, but he still says "When are we going home" on almost every visit. I have to get people to distract him when I leave but his short term memory is so bad he doesn't remember me even coming, and the staff say he's fine when I've gone. He has moments when he says how much he loves me and just wants to be with me without all the other people around, and I have questioned many times if he should be there - still do, but all friends, relatives, doctors and care staff say I would never manage him, due to his unpredictable aggression, (of which he has no memory afterwards) and deep down I know they're right. pamann has helped me greatly by talking to me about her situation, which is so similar to mine, but I still have guilt feelings.
    Sending you love and big hugs xxxx
     
  6. Bugsbunny4

    Bugsbunny4 Registered User

    Nov 6, 2015
    80
    Yorkshire
    My husband isn't lucid all the time but does have these times when he is thinking very clearly. He has vascular dementia and Alzheimer's. It's hard not to feel bad when someone you care about more than anything tells you he is being killed by being apart
    His short term memory is virtually non existent and he has no recollection of having to be helped with bathing, toileting etc. He even thinks he will be able to get a car when he gets out of the care home when he finds somewhere to live. X
     
  7. Bugsbunny4

    Bugsbunny4 Registered User

    Nov 6, 2015
    80
    Yorkshire
    Thank you, it sounds like you understand my situation very well. It's so hard coping with guilt when leaving someone you love behind, knowing you can't cope well enough to bring them home. It may sound strange but it's easier for me to cope with my inner turmoil when he is having a bad day and being really confused. How selfish is that!
    My husband also said yesterday that no one wants him any more and he us completely useless. It's all his fault and the best thing would be fir him to slit his throat. Today I have to take him to a hospital appointment. I am not looking forward to it. A carer will go with me. X
     
  8. Bugsbunny4

    Bugsbunny4 Registered User

    Nov 6, 2015
    80
    Yorkshire
    Hi,
    Yes the care staff tell me my husband is fine when I have gone home. He always cries when I leave but never tells them anything about our conversations on lucid days.
    It's impossible to know if this is because he has forgotten or just being his old self and keeping his own counsel. X
     
  9. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,990
    Cotswolds
    Those lucid conversations are so misleading and heartbreaking, because of the difficult times when there is no lucidity. That must be when it's clear why it needs to be a Care Home.

    My husband was sent home last week after an hour and a half in a Care Home. I'd hoped for some much needed temporary respite. Back home I fear for my health; over recent weeks my arthritis has become much worse, and I'm really struggling, seeing our home deteriorating, my standards slipping, and chaos looming. It's all I can do to keep my husband contented, and when I'm in pain its SO hard to stay patient.

    From where I stand, I'd say on no account consider bringing your husband home, no matter how painful those lucid times are.
     
  10. Bugsbunny4

    Bugsbunny4 Registered User

    Nov 6, 2015
    80
    Yorkshire
    Oh my goodness. How I feel for you, do you have any help at all at home?
    Before my husband was hospitalised in August , he had a stroke last December, I had two care calls each day, and a sitter who came in two early evenings and Thursday morning. This was working fairly well although I was getting very " ragged" with respect to keeping my patience. It was really as a result of my not being well and responding inappropriately that my husband lost his cool and became rough with me. After that a week in respite during which he behaved badly saw him being carried off to hospital. From there he went into care.
    All I can say to you is that if you haven't got any support at home please look into getting some. I take it the care home sent your husband back because he was difficult.
    I send you all my best wishes. X
     
  11. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Talking Point is such a wonderful forum, we can all express our feelings, without talking to all these lovely people trying so hard everyday to look after their loved ones. Keep posting whenever you feel sad and lonely, there will always be someone to help us.
     
  12. disi

    disi Registered User

    Bugs, how I so feel for you, my husband has been in Care since June, and recently he has been sobbing and saying all he wants to do is be with me and why can't he come home. Yesterday he was saying he didn't want to die, because he thinks he is in a place that he will die. I had him at home as long as I could manage, but in the end because he didn't sleep at night, I was so tired I really couldn't care for him any longer. It breaks my heart to see him as he has lucid moments at times. He recently thinks he is in the war and where is his mother and father, are they safe. I, like you, come home shattered after seeing him, albeit I can take him out sometimes. Last Sunday I took him to church as he loves the signing, and will take him this Sunday as it's a Carol concert. Am sending you a special hug.xx
     
  13. disi

    disi Registered User

    Morning Pam, how are you doing? xx
     
  14. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    427
    OMG - you touched a nerve with me there. It was June 2014 when I finally broke down and called the social services saying I just couldn't cope anymore. And I too feel so bad because looking back I know sometimes I wasn't responding in the right way and I feel its my fault he behaved aggressively. As he was always polite and well mannered when anyone called round, no one knew how bad his bad moments were until I videoed one on my phone - it was always the evenings and nights when he was worst. I still have nightmares about the day the assessment team came from the hospital. I still cant talk about that day much, although having said that it was more traumatic for me than my husband, as I made sure that a lovely guy from Age UK was also there, and if the decision was made to section him, then he should go with that guy in his car and not in an ambulance. The Age UK guy was the one that had managed to get him to have brain scan - something I could never do. He went so trustingly and quietly, I was crying for days afterwards. Still crying writing this and wondering if things could have been different. I wish I had discovered this forum earlier - people who have had the same experiences have so much sympathy and understanding - it really helps me cope with things as they are now xxx
     
  15. Bugsbunny4

    Bugsbunny4 Registered User

    Nov 6, 2015
    80
    Yorkshire
    You poor thing, how dreadful you must be feeling.
    It is hard trying to rationalise your thoughts and actions when you are coping with someone who is unable to rationalise because of their illness. So you end up blaming yourself for everything that goes wrong, and feeling guilty about asking for help when at the time it was the right thing to do, and the only thing to do for your own sanity.
    As time has gone on I keep asking myself what my husband would be saying to me if he was back to his old self. The conclusion I come to is that he would want me to go on living my life, and not to worry over him.
    Try to think like that and be glad to look back and remember the happy times you had together.
    X
     
  16. Mappeck

    Mappeck Registered User

    Dec 6, 2015
    3
    Guilty and/or selfish - how can I cope with all these feelings?

    Feeling
     
  17. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    I care for my mum which i know must be very different than your husband or wife. I odten too feel guilty but mums social worker put it well. She said you need to plan care around the bad days. With good 24hr care she will have more good days that she can at home. That is the paradox here. Its n3ver going to be easy but your are keeping him safe. You cant do that at home anymore. We all know that. Love quilty
     
  18. Mappeck

    Mappeck Registered User

    Dec 6, 2015
    3
    I was simply amazed to read your post regarding your husband because I am in such a similar situation it is almost uncanny. The more I read the more I identified with what you are going through - even down to the bit about being 'kicked out'. My husband went into a care home mid June when I was diagnosed with breast cancer. He has never really settled and I was advised not to visit while I had two lots of surgery followed by chemo. Well - that was the easy bit. My husband has no concept of time and how long he has been in the home. He didn't recognise me as his wife at first but now expects to be coming home every time I visit. I was on my way there this afternoon but just couldn't face another emotional upset (still affected by the chemo and hormonal drugs too). Knowing someone else is going through the same experience does help but I don't know how to handle this '
     
  19. Night-owl

    Night-owl Registered User

    Feb 10, 2011
    22
    S. Lincs
    partner's distress in care home

    I feel for all the folk on here who are grappling with this terribly painful situation. Mum was ready to move into care, and despite having vascular d., told me so, so I was very ,very grateful for this. The only helpful thing I can think of saying here, is that the decision about your loved one entering full time care is made when you are at the end of your tether, and now you're beginning to recover simply due to NOT having to be the full time care giver, you've forgotten how bad the reality was, and would be again if you reverse this decision.
    As others have said here, you are keeping your loved one and your self safe in the only way that's possible. You have to write this down, stick it up at home somewhere visible and look at it every time you have doubts.
    The other point is that it might be good to ask social services to see whether the care home is actually allowing the residents to sit 'doing nothing all day'. If this is the case, another home might be necessary. The loss of short term memory is horrible but does have this going for it...your loved one may not remember the times of distress; also, the book 'Contented Dementia' advises telling your relative/friend that you'll look into them coming home shortly; they'll forget this by your next visit, and yes, you'll have to keep on saying this, but at least they'll feel hopeful more often than despairing, and you can leave feeling you've made them happier for a time.
    Love, Night-owl.
    The ot
     
  20. clareglen

    clareglen Registered User

    Jul 9, 2013
    325
    Cumbria
    Rageddy Anne have you got your husband into care yet? This sounds bad. In the area where I am a care home did the exact same thing, returned a wife to her husband when he was due to go into hospital the next day, as she was deemed too bad for them. Tragic results for both of them. The coroner issued guidelines that care homes must never do this again & refer to social services. I hope you have a social worker. You must get some respite, at the very least.
     

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