Peter's move to a Nursing Home

Discussion in 'Younger people with dementia and their carers' started by Westie, Feb 11, 2008.

  1. Westie

    Westie Registered User

    Peter finally moved from the assessment unit to an EMI nursing home last week. I haven’t posted about it before now as I really didn’t know how I felt about it and certainly couldn’t put it into words.

    His transfer was a total shambles. The SW arranged the move with the hospital, but then somehow forgot to actually mention it to either myself or the home! First I knew was a phone call from hospital asking me to come over as Peter was so upset. Why was he upset, I asked. Answer – worried about his packing. What packing? Answer – for his move. What move? Answer – he’s moving today. That was the start of a dreadful day for me.

    I went over and packed for him, lying through my teeth the whole time. Yes, it’s fine. Yes, it’s only for a short while. Yes, the doctor says you have to go. You’re going by ambulance, that’ll be fun won’t it? Inside I was feeling sick and trying so hard not to break down in front of him.

    Drove over separately and met him there. Suddenly, the other residents seemed much older and much sicker than the previous week. But the staff were lovely – every single one of them from the manager downwards. I remembered so many of you saying that the staff are the MOST important part of a home and I took comfort from that.

    Peter was very agitated for a couple of days but settled after that surprisingly quickly. The home has a lot of space for him to walk around and a huge main lounge with a glass roof which makes it feel very open. Important points for him, but what has made the move easier is the fantastic help and support from the manager/owner. He is in his mid 40s and loves cars. When I first met him and told him about Peter’s love of cars he promised to take him out for a drive. I thought it would be a one off but no, he takes him out 2 or 3 times a day. Anywhere he goes that is suitable for Peter to accompany him, he takes him along. It makes such a difference to me knowing he is getting out and I don’t have to spend every visit driving him aimlessly around to pass the time. The man is a saint!!

    As I write this I know it sounds great, so why do I feel so down? The first night he moved there was the lowest I have felt since his diagnosis. Hospital didn’t seem permanent somehow – there was always that tiny idea that he would come home again. But moving to a home just confirms the stark reality that he is extremely unlikely to ever come home again and marks the end of our life living together. Some people have commented about how good it must be to have him settled – almost like my problems are over now and time to get on with life. The reality is so far from that. I don’t want to move on and they don’t understand – but I know you will understand.

  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Dear Mary-Anne

    I am so sad for you - a positive post in many ways (good home, excellent staff) yet this is yet another step down. I'm only speculating about how it must be to lose a loved spouse like this, and it is a loss. Of course you don't want to move on - how could you? Try to bear in mind (although why should you, you're the one grieving) these people probably mean well. I guess it is good that he is settled in one sense, but how can this whole thing be considered good in any way?

    Take care

  3. BeverleyY

    BeverleyY Registered User

    Jan 29, 2008
    Ashford, Kent
    Dear Mary-Ann

    It's great that the home/staff seem so helpful and caring. Taking Peter out so often is a fantastic!

    However, as you say, no matter how welcoming/obliging/caring they are, it can't compensate for the feeling of loss you are experiencing. Hospital to home does make it all real and permanent, and I can only wish you all the best. You and Peter may no longer share a home, and this cruel disease may have robbed you of his company each day - but you still have him each day in your heart and your memories.

    You don't share the same roof anymore, but you still share your love, and that is what is really important.

    Beverley x
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Mary-Ann,

    The home sounds wonderful and you`ve certainly struck lucky with the manager taking such a personal interest in Peter.

    But it ends there.

    I can only imagine the feeling you have is akin to a separation, as that`s what it is, only without the fallout.

    It was made worse by the lack of communication and organization, but even so, you would still have found it a terrible ordeal.

    I can only sympathize knowing my day will probably come. Take care and know your friends on TP are with you.

    Love xx
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    #5 Margarita, Feb 11, 2008
    Last edited: Feb 11, 2008
    I do feel for you and your children,can only imagine how sad it must be for you all . I can perceive life like
    ( A Book ) a chapter in our life has closed, another chapter open .
    we can always reopen relive the last chapter of our lives when we feel like to , while living in the new chapter of our life's xx
  6. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    Oh Mary-Ann, that really is a shocking tale. I'd have gone through the roof. How could they fail to let you know? What idiots!

    You must be feeling so sore about the transfer and all the implications of Peter being in a nursing home. I can't help thinking that you should take a little time to look after yourself. Allow yourself to relax somehow, if you can, because things have moved on, and at first sight it sounds as if Peter is in a very good home. That's a massive step onwards, and there is a lot of living left for you both, and still some positive things to enjoy together I feel sure.

    But living more for yourself, taking care of yourself will help you to keep up with Peter's illness. I genuinely think that people with AD are almost running a race which carers and loved ones have to try to keep pace with, wherever the path leads.

    I hope you feel more at ease as you see how Peter gets on, but even if things don't work out, don't stop finding time for yourself, because that is how you will be able to re-charge your batteries, as it were.
    Kind regards,
    Deborah x
  7. TinaT

    TinaT Registered User

    Sep 27, 2006
    Dear Mary Anne,

    Thank you so much for your post. I am one step behind you in that I have a meeting at the hospital next week and Ken's future will be discussed. My husband has been on the Continuous Care unit some 7 months now and like yourself, I've hoped and prayed that he can somehow come home. In reality that would be very difficult if not impossible. I have looked at the EMUI units in my area and am horrified by what I have seen. I am at present clutching at straws trying to find out about any EMI units outside my area. I have one hope but it is very tenuous as I've heard that a new Methodist run EMI unit will be opened in my area. I don't think it has been built yet, so as I say this is a faint hope.

    It namde me very happy to read that you have found a good home for your beloved husband. Even so I know the deep sadness you are feeling. I visit my husband every day and every day is filled with such a dreadful roller coaster of emotions that sdometimes I think I am going mad! The only thing which keeps me going is the love which we still have for each other. Last night my husband phoned me from the ward. He sounded so strong, so much like his old self. He phoned to tell me that 'he was working late and wouldn't be home 'till 9 pm'. I broke my heart for many many hours afterwards and am feeling very fragile and tearful today. Life is so unfair!

    I am thinking of you and hoping that all goes well for you both. Hopefully your life together may now take on a happier, more settled aspect where you can get some rest from all this emotional torment. I do hope so. All my love TinaT
  8. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Dear Mary Ann,
    Yes, like you my Peter was placed in a E.M.I. Unit last May.
    The Home I found is fantastic. Knowing that Peter has the 24/7 care.
    Until someone experiences the loved one is not coming home, the anger, frustration, fear, resentment that if I was not disabled perhaps I could have done more. It does not matter that I am told, I gave Peter two extra years at home. Home - I no longer refer to it being home anymore, just a house I am living in.
    I can only send you my love and best wishes.
  9. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    I understand

    Mary Ann
    I understand. Enough said
  10. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    I have just read your post and feel so saddened by it. I am sorry I cannot add anything of any comfort - but just to say I do really feel for you. I do hope things get a little better.
    Love Jan
  11. Westie

    Westie Registered User

    Thank you all for your kind words. They really do help.

    Tina, I do hope your meeting next week goes well. If there isn't a suitable place for Ken in your local area, you may need to look in neighbouring areas. Peter's home is actually in a different county to where we live but it was the only suitable place I had come across. It takes me 25 minutes to drive there which is not too bad.

    It's early days at the moment and I'm feeling very much like the new girl at school. I'm starting to learn the names of the staff and chatted to another wife yesterday who was visiting her husband. Somehow, these people will need to become almost like a second family for Peter.

  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Mary-Ann.

    Please keep letting us know how you and Peter are.

    It`s not often I`m lost for words but the whole of your ordeal just now is eveyone`s worst nightmare. I only hope you can draw strength from somewhere.

    Love xx
  13. Westie

    Westie Registered User

    I only hope you can draw strength from somewhere.

    Sylvia, TP is my main source of strength. I have learnt so much from everyone's different experiences. That knowledge has given me the confidence to challenge certain decisions made by the 'powers that be' that I would otherwise have just accepted.

    Knowing there are many others also coping in difficult circumstances helps me to keep things in perspective. If so many of you can keep going, then so can I. I owe it to Peter to be his voice and to arrange the very best care that is possible in our circumstances.

    I also consider myself lucky to have a few really good friends who have stuck by me. They may not fully understand always, but they listen to me and help when they can. Two of them now visit Peter every week without me. They hardly knew him until a year or so ago, but visit to help meand in the process have learnt to accept him as he is. True friends indeed.

    Love to you all in your daily struggles.

  14. Margarita

    Margarita Registered User

    Feb 17, 2006

    Well said I 2nd that xx
  15. jackie1

    jackie1 Registered User

    Jun 6, 2007
    Dear Mary Ann,

    I’m just catching up with the posts and am so sorry that you and Peter had such a dreadful time with the move to the home. It’s disgraceful that you both can be treated so badly.

    So glad that Peter is settling in well. It all this upheaval that must be of some comfort.

    Take care of you and yours.

  16. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Mary-Ann

    Somehow I missed your thread, and I'm sorry.

    I know exactly how you feel, I went through the same emotions last October. I still haven't come to terms with the new arrangements, but it does get easier.

    And I'm with you all the way on 'moving on'. People kept asking me join committees, come to meetings, as if all I needed was something to fill my time.

    But it's not like that. John is still my prime concern, and I don't want his place filled with meetings that I can't concentrate on.

    I hope things are going well for you, it sounds as if Peter is in a good place. Let us know how you get on.


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