Care at home or EMI placement

Discussion in 'I have a partner with dementia' started by countrygirl, Nov 8, 2015.

  1. countrygirl

    countrygirl Registered User

    Nov 6, 2015
    10
    My husband first became ill last August. At first we all thought he was just depressed and he was being treated for depression and anxiety. But I started to feel it was maybe dementia when he began to get confused and forgetful and then imagining things were happening which were not. He was still not diagnosed until June this year after 10 months of living with him being verbally abusive and drinking every night (he said to relieve his stress) but of course it just made him more depressed and abusive. I know that it was not his fault and that it is the illness that makes him say hurtful things but it got so that I did not feel safe anymore and my children were also concerned for my safety. In June he was taken into an assessment unit where he was diagnosed as having mixed dementia and it was a huge relief for me although he does not know that he has dementia as he has no mental capacity now and cannot remember where he lives. Its all happened very fast.
    He is on a lot of medication and after lots of different types they have managed to get him a bit calmer. He is on Section 3 as he has managed to abscond twice although it is a locked in unit but he is still very fit and strong for his age and he still wants to drink. The time has come to decide what happens on his discharge and I am struggling very hard with this decision. He wants to come home and my two children want him home, but the hospital team seem to think that I will find it too difficult to cope with, even with carers coming in daily. We have been happily married for 52 years and I am desperately lonely now, living alone the past five months, but at the same time I am extremely worried about him coming home again especially remembering how things were before he went in hospital. I feel it would be better if he went into care and was professionally looked after and yet I am full of guilt at letting him and my family down by not looking after him at home. I know I have to make the decision and it is different for everyone but I would appreciate any
    feedback or advice from fellow sufferers from this awful desease.
     
  2. Beate

    Beate Registered User

    May 21, 2014
    11,711
    Female
    London
    Wow. Just read back what you've written. You know in your head that he would be better off in care, and the medical team agrees. Your heart might want him home, but guilt isn't a good enough reason. You're not letting him down at all, on the contrary - you're doing what's best for you all. I am sure your family will understand that he needs more care that you alone can give him and that it would probably make life for you too difficult. Yes, you love him, yes, you think it's your duty to care for him but it isn't and sometimes it's just not possible. You simply cannot put yourself in harm's way - that would be horrible for your children too. Someone on a section 3 needs a specialised dementia home - you might find that not everyone will even want to take him so why should you on your own be taking his care on?
     
  3. Jinx

    Jinx Registered User

    Mar 13, 2014
    2,333
    Pontypool
    Country girl what a dreadful time you've had, but sadly with dementia you can't turn the clock back and your husband will never be able to give you the love and companionship you used to share. He needs you to be strong and to ensure that he gets the care he now needs and for you to be able to visit him knowing that you can just be his wife whilst you're there, and leave the care to others better equipped to cope 24/7. Really feel for you. xxxxx


    Sent from my iPad using Talking Point
     
  4. canary

    canary Registered User

    Feb 25, 2014
    10,531
    Female
    South coast
    Wow, countrygirl - just ...... wow :eek:
    Knock that guilt monster off your shoulder and stop listening to what it is saying.
    Your head knows the answer.
     
  5. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,780
    Salford
    Hi Countrygirl, welcome to TP
    I'll cope with my wife until the day I can't cope anymore, then and only then I'll have one day let go, I think the time has come for you to let go.
    It sounds like you've done as much as anyone could be expected to do and that getting him back home might be a danger to him or/and you/and others.
    Living without him may seem to be difficult, but living with him may be impossible, not just for you but the children you mention too.
    I appreciate the loneliness aspect of not having him there and I won't suggest you join the WI or take up a hobby, I have my wife here with me and I get lonely because we can't go anywhere in case she makes a scene, does something odd or whatever.
    You can only do what you can do and " I am full of guilt at letting him and my family down by not looking after him at home." is rubbish, you're not letting anyone down when you do what's best for everyone concerned, never feel guilty when you've done as much as you can, big pat on the back for you for all you've done but now may the time to bow out like the "experts" are telling you.
    K
     
  6. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Hello Country girl, l am going through the same as you, married for 51yrs hubby now in a CH for 2months, l miss the husband l had before Alzheimers came along, l do not miss the way he is now, it is such a relief, as everyday was a nightmare, l was trapped indoors as l could not take him out, so two life's messed up!!! the decision l had too make was the hardest thing l have had to do, l did have the support of family and friends, they were pleased that l made the right decision, as they could see how much it was affecting my life, l am now enjoying going to see my hubby everyday, and he is pleased to see me, hope this story helps you
     
  7. countrygirl

    countrygirl Registered User

    Nov 6, 2015
    10
    A big thank you

    I was so grateful to receive all five replies to my message. The first one made me burst into tears, I suppose with relief that I am not such an unfeeling person by thinking about putting my husband into care. Thank you all so much for your understanding and kind comments. I really have to talk to my daughter and hope that she can understand how I feel and not think too badly of me. I know she loves me and will probably come round to my way of thinking. It is just different for children (she is 42!) of sufferers then it is for partners.
    What a great idea this talking point is and I am so glad I found it.
    Love to all
     
  8. countrygirl

    countrygirl Registered User

    Nov 6, 2015
    10
    Thank you beate for your comments. I burst into tears when I read your message. I
    guess because I felt that someone could understand my dilemma and not think that I
    was just an uncaring person by thinking about placing my husband into care. I just have to hope that my two children (42 and 39) will understand also.
     
  9. countrygirl

    countrygirl Registered User

    Nov 6, 2015
    10
    Thank you Jinx for your kind words and I am sure in my heart that you are right. Still
    feel guilty though. I suppose I will get used to that in time.
     
  10. countrygirl

    countrygirl Registered User

    Nov 6, 2015
    10

    Thanks canary. I think I will have a hard time getting rid of the guilt but hopefully in
    time and also hopefully if he can settle into the right home, I will succeed.
     
  11. countrygirl

    countrygirl Registered User

    Nov 6, 2015
    10
    Great to have people to correspond with who understand. A pat on the back for you
    too for looking after your wife.
     
  12. countrygirl

    countrygirl Registered User

    Nov 6, 2015
    10
    I understand exactly when you say you do not miss the way your husband is now and I
    also felt great relief when my husband was taken into hospital as every day felt a nightmare. I hope that my husband will be able to settle into a home and then I can
    just visit as you do. Yes your story did help.
     
  13. Jinx

    Jinx Registered User

    Mar 13, 2014
    2,333
    Pontypool
    Country girl, like Pamann my husband has just gone into care, less than a week ago in fact. We have been married 41 years and this was the hardest decision, and the guilt monster has been rearing its ugly head, the time was right but I too miss the man I had pre-dementia. I have to keep reminding myself that it is not my fault he got this disease, I haven't stopped caring about him, I still love him but have handed his day to day care over to the experts, and can now visit when I want and spend time with him having had a good night's sleep. I hope it works out well for you. xxx


    Sent from my iPad using Talking Point
     
  14. nannylondon

    nannylondon Registered User

    Apr 7, 2014
    2,476
    London
    Hi Country Girl like you my husband is in a care home after being sectioned he has been in the home for 6 months and for the first few months I felt as though I had failed him we had been together for 42 years of course I miss the man he was pre dementia but I know he wasn't safe at home anymore now he is been looked after by experts of course I still love him very much but I can visit him and enjoy our time together without the awful stress so please don't feel guilty xxx
     
  15. Bugsbunny4

    Bugsbunny4 Registered User

    Nov 6, 2015
    80
    Yorkshire
    I have been through exactly the same as you

    Hi,
    My husband has been in a care Home since November 3rd. He went there from an assessment unit, and was on a section 3. He hasn't settled at all yet and visiting isn't easy because he has started to remove all his clothes, destroyed two pairs of glasses , torn his shirts and sleepwear. He went into a nice room with a new carpet but urinates on the floor ( no clothes or pads on ) because he can't find the toilet in what is still a relatively new environment to him.
    I can identify with how you feel, I wanted my husband back home but followed the advice I was given by the team who looked after him for 10weeks. I know I couldn't manage him at home with 4 half hour care calls per day, but I still feel bad about him being in care. All his disturbed behaviour I blame on the fact I didn't have him back home. My head tells me that is nonsense. I didn't cause his dementia just like you didn't cause your husbands. Yes I miss the man I love, and have been married to for 49 years, but I have done what us the best for him, our sons and for me.
    Take care x
     
  16. countrygirl

    countrygirl Registered User

    Nov 6, 2015
    10
    Thank you nannylondon for your reply to my post. Every time I read a few words of
    support it helps lessen the guilt. The trouble is that my husband does not seem so
    badly affected as the residents I have seen in the EMI homes. He is fully continent and very active, and wants to come home with me more than anything, but the hospital team are still advising me to put him in care. I can't help feeling that I am letting not only him down but my daughter and son as well. I have thought of trying to care for him at home whilst leaving his name down for placement, but again the doctor thinks that this would be worse for him if I could not cope. They say it is better if he goes straight into a home from the hospital as he is used to their routine.
    It is the hardest and most difficult decision I have had to make and it leaves you feeling very lonely. However I understand what you have said about expert care and
    safety and this is what is pushing me to the carehome option.
    Thanks again. xxx
     
  17. countrygirl

    countrygirl Registered User

    Nov 6, 2015
    10
    Thanks Jinx - still trying to get used to the idea of placing him in care and can't get over the guilt but I feel it is the right thing to do nevertheless. I hope your husband settles well in his new home and of course you are right - not your fault he has got
    dementia and I am sure, like me, you would like him back as he used to be.
    Corresponding with people going through the same problems is my lifeline at the moment. Thanks xxx
     
  18. countrygirl

    countrygirl Registered User

    Nov 6, 2015
    10
    Hello bugsbunny4. You sould like you are needing a hug. I am so sorry your husband
    has not settled into the home but it is very early days as I am sure you have been told. Our hospital team have told me that even when staff take my husband out for a coffee it really disturbs him and that any change in environment so confuses dementia sufferers that they get very upset. I am sure that even if your husband had come home he still may have reacted the same as he is in the carehome. We just have to remember that its the illness that makes our loved ones behave the way they do and all we can do is make sure they are looked after. I hope that he settles soon and you can find more peace of mind. I have that worry ahead of me too so I
    can understand how you feel. Love xxx
     
  19. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Hello Country girl, just checking up on your posts, my hubby has been in CH now for 10wks, he is so happy, the first 3wks he was a nightmare, never thought he would settle, he is always pleased to see me, when l go l say see you tomorrow, and off he goes quite happy, l cannot believe the change in him, he is well fed, comfortable accommodation, plenty of activities to stop him feeling bored. I do not feel guilty, as l have looked after him for 55yrs of my life, he has always relied on me to do most things for him, he has been a good faithful husband, it is a pleasure to visit him, and to see him so happy☺ l hope things work out as well for your hubby
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.