The hardest decision

We read and are told that PSP patients have a life expectancy of 6-7 years on average. But we all also know that invariably the diagnosos takes a long long time. I believe my husband's PSP began in 2005 following an accident so who knows how long he has left.

He has deteriorated a lot recently. He can no longer stand or walk, seems to hurt when moved and has had a catheter fitted. We are up to 2 carers 4 times a day and the house looks like an orthopaedic shop. Despite all this he is in good spirits, still has a good appetite and a sense of humour. I really think he still has the capacity for a reasonable quality of life, albeit with a progressive condition. But he won't get it being shunted from bed to commode to shower to settee. I don't want him to fester in front of the TV. I want him to be in a stimulating environment with people around and things going on.

After a lot of soul searching, heartache and more tears than I thought I had I have applied for a long term place at a home dedicated to the care of ex-servicemen and women. I visited last week and found the most marvellous, warm, caring community. He will get the best care and being in a wheelchair will bar him from nothing. They have outings, activities, entertainment, physio etc etc. Although PSP has affected him cognitively as well as physically I know he'll settle (as he does in respite) and be happy with all the attention and stimulation he'll get.

I have the full support of his family, my family and our friends who have been saddened to see the decline of such a strong, capable man.. They know I'm not giving up on him, I'm trying to make the rest of his life better.

I never thought I'd have to make such a hard decision. And I'm dreading the day for me, but looking forward to it for my lovely man.

SheilaN

27 Replies

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  • Hi Sheila

    I know just how you fee.. I had the exact same decision to make in April 2009. It was the hardest decision of my life. I got Ray into a lovely nursing home who gave him the quality of life in his last mionths tht i could never give him.

    God Bless you, you are doing the very best you can.

    Love and hugs

    Jenni

  • Thanks Jenni. I appreciate your understanding.

    Take care

    SheilaN

  • Dear Sheila,

    How incredibly brave of you to make this decision. I do hope the home is near enough that you are able to visit and participate in the community there as and when you can.

    All the best to you both

    h

  • Thanks h. I don't feel brave to be honest but I hope I do on the day.

    The home is 55 mins away from here, mostly motorway and a very easy journey. I plan to go regularly and my step daughter plans to fly up from London to visit her dad. The home is very near Glasgow airport so will be easy for her aswell.

    Take care

    SheilaN

  • HIi sheila

    it is a difficult decision to make and i am glad you have the support of family and friends

    i have psp and do not have close family nearby and realsie that the nursing home si my final option

    Meanwhile i am moving into a ground floor flat where i lvie at the momet in January and cna only hope to have a good time there!

    love jill

  • Thanks Jill.

    We don't have family nearby either. We are in Central Scotland, my family is in the north of England and my husband's family is in the south east. If we had family popping in all the time it would be different.

    Moving in to a ground floor flat is a very good idea and hopefully will give you renewed energy and a greater feeling of security without stairs to worry about.

    My husband's social worker has advised us to plan 2-6 months in advance so if you feel you will eventually move to a nursing home ask someone (do you have a social worker? If not ask your GP to refer you) to start looking with you now. PSP has taught me not to wait until I'm on my knees before I ask for anything. Better to be early than too late.

    Take care

    SheilaN

  • Hello Sheila

    I agree with the comments above that you are incredibly brave to have made this decision for your husband's care. You should not feel at all guilty as you have devoted many years to caring for him even before he was diagnosed with this terrible PSP. I am pleased you have found somewhere appropriate for him and you should feel proud that you have had the strength to make this decision. I am sure his remaining life will be in both your best interests and that when the time comes in my life to find somewhere for my hubby that I too, will have your strength.

    God Bless you both and take care of yourself.

    SuzieQ xxxx

  • Thanks for your thoughts Suzie. Having read your blogs over the last few months I feel you are a very strong woman so if the time comes you will get through it.

    Take care

    SheilaN

  • Dear Sheila,

    Such a hard choice for you to make :-( You have been so brave to make it. At least now you won't be worn out from caring for your husband and the time you are able to spend with him will be quality time!

    I hope you both settle quickly into your new routines and you can both make the most of the time you have left together.

    Take care

    Love to both of you

    Kathy xx

  • Thanks Kathy.

    So many people have echoed your comments, that when I visit Eddie I won't be worrying about him, I'll just be able to enjoy being with him.

    Take care

    SheilaN

  • Hi Sheila

    Reading your post was very sad for me as I know the day will come very shortly when my Mum has to make that tough decision too - for all of us. My Dad can no longer stand unaided, has carers throughout the day too and is in his chair most of the day. Mum tries to get him out for walks as often as possible but it's hard for her to cope alone when we are not around. Dad still can laugh at times, and as you say can still appreciate food, so as you say still has a quality of life. He goes to respite on Thursdays. I just know we will have to cross the same bridge as you have soon and know we will do it for the right reasons. Dad will understand I know and I will love him just the same. You are doing the best for both of you and your husband sounds such a wonderful caring man who as you say will go willingly, for you all. I'm so sorry you've had to make this decision right now, but please know that other people are thinking about you and know how this feels. It's just the most upsetting thing isn't it, in a once strong, healthy, fun-loving person's life.

    Love to you all, and our thoughts are with you.

    Fran & family

  • Thanks Fran, your thoughts and comments mean a lot.

    I don't envy anyone the decision but strangely enough I felt relieved once I'd made it.

    No matter how much we try to help the person we love we can't turn a house into a hospital and we can't provide the level of care and attention that professionals can.

    Take care

    SheilaN

  • Hi Sheila.....I feel for you in having to make such a difficult decision. I'm sure once you've both settled that you will find that you've done the right thing by your husband. After all, it's his quality of life that matters & if he will get the care & attention you want for him, then why not? I know that's easy for me to say as I haven't had to make that decision although I have to accept that the day may come!!! Like you, I think my husband Frank has had PSP since late 2005 but he isn't as progressed as your husband. Frank spends most of his time in his chair but can still walk with his 4 wheeled walker, still has a reasonable appetite albeit on a soft food diet but his speech isn't good most of the time. We have a brilliant Sprint team in our area who are a marvelous support for us & have provided all the equipment he needs. Our house, as yours, looks like a shop for mobility aids!! We have only recently had a Carer start for 1hr in a morning to get Frank ready for the day but will probably have a bedtime carer after New Year. Finding things to stimulate him is difficult but I don't know whether he would accept going to a Day centre....I haven't broached the subject & don't really know how to.

    Anyway, take care & try to keep smiling.

    Love Hazel B xx

  • Thanks Hazel.

    I always dreaded broaching the subject of day care and respite care but my husband has been very amenable about things and has never resisted or complained. He loves the fuss and attention paid to him. I've mentioned the home he is going to only in terms of a place like the respite unit but which specialises in the care service personnel. I've said he can try it some time to see if he likes it. He has no real concept of time and knowing he will settle has helped me avoid saying he will live there permanently. It's a tricky one, especially if your husband is cognitively intact which mine isn't.

    I think I broached the subject of day care by asking if he'd like to go to a club or group where he could play cards or dominoes etc with other company besides me all day. He went quite happily and we both benifit.

    Take care

    SheilaN

  • Hi Hazel, please look at your message inbox x

  • Hi Sheila....thanks for that. Unfortunately Frank's eyesight is terrible. He has no up/down gaze & only slight movement to one side. He could only see properly out of one eye anyway before he got PSP & he doesn't join in conversations much either .He used to go to the pub to see his mates every other Sat for a couple of hours until early last month when he had a bad chest infection. He's shown no interest in going since. So I don't really know what he'd do at a Day Centre. If I did broach the subject & he agreed to it, I feel it would probably be just to go along with it. I really don't know what to do. He does like the fuss & attention paid to him by his morning Carer but unfortunately she's leaving for pastures new at the end of next week. Dilemma!!!! how did you go about finding a Centre ?

    Take care & try to keep smiling. Love Hazel B xx

  • Well the first step is to have a social worker. If you haven't got one ask your GP to make a referral. We are lucky to live in a small county with excellent resources and staffing which helps. Anyway the SW recommended a resources centre for adults with physical or sensory issues. Transport is provided. They have all the kit and equipment for disabled people but they also have computers, physio, a relaxation area where they enjoy fibre optic lighting while they listen to music. The ususal range of board games etc. There is a craft room, they can cook and garden with adapted heights and surfaces. They also go on outings occasionally.My husband doesn't do all of those things but the important thing for him is the company, the stimulation and the change of environment.

    I know what you mean about the carer. Eddie has got used to his main carers, especially one who also sits with him as part of a sitter service Our local authority pays for up to 3 weeks a year sitting which is quite a few hours. So that I can go out without worrying I use them for about 5 hours a week over two different days.

    You could also ask the carer if she has clients who go to a day care centre. Then if you contacted the centre they'd let you know how to go about applying for a place.

    Good luck

    Take care

    SheilaN

  • Hi Sheila....thanks for the info. We do have a SW so that's where I'll start. If there was one with all the things you mention he might just be OK. I suppose it's pot luck depending on the area. I really do need a break & I'm sure Frank would love to get me out of his hair for a while. I'm not sure our son & daughter would like the idea but then they're not here 24/7. I shall try to broach the subject with him.

    Thanks again. Take care & keep smiling.

    Love Hazel B xx

  • Dear Sheila

    Richard, my dear husband of 35 years showed the obvious signs of PSP at the end of 2003. He was forced to take early retirement the following year. The first 4 years he was at home, with me as his carer. No family nearby to keep popping in and neighbours and friends eventually stopped popping round too. When I felt I couldn't cope as his health began to worsen, like you I had to make the big decision about maybe finding him a better place for his care.

    With the help of his social worker we found a brilliant neurological care centre in New Ollerton, Nottinghamshire which turned out to be the best decision we could have made. Richard absolutely loved it there; he made lots of friends; there were lots of activities, entertainers, they had a physiotherapist in the building, relaxation sessions, cookery sessions, trips out etc. So many things in fact, everyday was stimulating and different.

    I looked forward to seeing Richard and assisting in his care, several times each week. I enjoyed the chance to chat with everyone too. His carers became my friends. They became 'my family'.

    Looking back, I know I did the right thing in the circumstances. I gave him the happiest time he could have had during his last 2 years. Having such wonderful place for his care, gave us the chance for ahappy and relaxing 'quality time' time together.

    It is a hard decision to make, but try not to feel guilty, I am sure you will find it will work out really well.

    Love

    Maggie x

  • Thank you for taking the time to reply, Maggie. It is very comforting to share thoughts and feelings with those who understand or 'have been there'. Your words mean a lot.

    Take care

    SheilaN

  • Hi Sheila

    I know it would have been a tough decision to make but it will give you and your husband the support you need with this terrible decision. We think that dad had the condition since about 2003 but to be honest it was only diagnosed early this year and he passed away 5 months later. When dad went into short stay and then long term care it was good to know that I could leave him in a safe place.

    We spent quite a bit of time there and got to know the staff and residents really well so it sometimes felt like an extended family and the residents were very quick to tell me if he had been trying to do something wrong, like getting up when he shouldn't :). Dad found this amusing and when he could still communicate at the beginning of his care there was always some banter between us all.

    I hope all goes well and that you and your husband settle down to the new routines.

    My thoughts are with you both.

    Take care

    Lesley x

  • Thanks Lesley. Even on the day I visited the welcome was warm and sincere and the community atmosphere impressive. All the residents looked relaxed and contented and I felt immediately that it was the place for my husband. The rapport betwen the staff and residents was easy and comfortable. The people who live there are lucky.

    Take care

    SheilaN

  • Hi Sheila You are doing the right thing my husband went into a nursing home in January it was the hardest thing to do but the best for him .The unit he is in is for people under 65 so there is a lot going on and he is included in everything even though he cant take part he is never on his own .I visit him every day all he can do now is smile he seems very setteled they are like his new family .I still feel guilty when i leave him i dont think that will ever go away . Take care M

  • Thanks maryelezibeth.

    I appreciate your thoughts on the subject. Even though I feel comfortable with the decision I'm sure I'll feel guilty whenever I leave him. But he'll be much better off there.

    Take care

    SheilaN

  • Hi Sheila....I went to see our GP today about my feelings....as I thought she has prescribed antidepressants....Fluoxetine 20mg. She also asked me about Respite care & stressed that I should seriously consider it. She is actually going to come here to our home in a couple of weeks ( giving me time to think about it first ) to broach the subject with Frank. We have quite a few nursing/care homes in our area but whether any are suitable is another matter. I think I will have to do this.

    Take care & try to keep smiling.

    Love Hazel B xx

  • Hi Hazel, you know one of the hardest things I have found during all the stages of this horrible disease is first of all admitting to myself that something is needed, then, even harder, saying it out loud to someone else. Because then it's true and there's no real going back.But saying it aloud also brings a certain degree of relief that a problem shared is halved and something will be done to help.I hope this makes sense.And I hope you reach the outcome that suits both you and your husband.

    Take care

    SheilaN

  • Hi Sheila...thanks for that. Yes it does make sense. I said something similar to my brother on the phone earlier. Now I've voiced it to him I know I have to do it. He had a nervous breakdown some years ago & doesn't want to see me go the same way.

    Take care & keep smiling. Love Hazel B xx

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