Well I collected P from respite earlier this morning and he is clean, well fed and as far as I can tell quite well cared for. Unfortunately, the care home has used his wheelchair to move him everywhere (probably because he fell after he had only been there a couple of hours !), which means he is extremely difficult for me to manage him at home now.

After my week`s respite, I now realise how difficult it is to handle P, and I know now that it can only be a matter of time until he has to go into permanent care. Obviously, I am going to try my best to keep him here as long as possible, but after not seeing him for a week it has been quite a shock to the system when I remember how hard it has been for such a long time now.

Although the week went really well (for both of us I think) it has focused my mind more on the future and it has made me realise that I have to make a very hard decision sometime soon. No-one else can make the final decision, I know it has to be me, but even with the support of our sons and all the professionals I deal with, I feel heartbroken already.

21 Replies

  • I also am at that point and Jim is away at respite right now. He is doing better there than at home. I feel so much better and my body is healing nicely. I don't hurt when I move now. I also am not looking forward to picking him up in a week from Friday and starting again. It will certainly tell me whether I can carry on or not. Maybe his being away and being a little more independent will make things a little easier at home. Time will tell but I also know I have to make that very difficult decision soon. It is hard to let go and give in.

  • I was like you, dreading bringing P home again and wondering if I could cope again. Within the first hour after we got home we had one of those 'unspeakable toilet issues and P was unable to stand without huge support from me.

    I can't begin to tell you how depressing that was and I was dreading getting up with him during the night, however things have settled down a bit today and I managed to get him to daycare somehow.

    I have spoken to him and tried to explain that I would visit him every day in a home but there is no way you can sweeten that pill !

  • Hi NanBabs, really feeling for you. We all live in dread to reach your stage. But at least you now know, you will both cope and that P will be well cared for. Which, if you are struggling, won't be able to do. There is only so much one person can do and you know you have done EVERYTHING you can!!!

    Sending lots of love and a big hug


  • Nanbabs my heart goes out to you, this illness takes away everything. Heady said you can't do everything, and as we get older things are more difficult, to manage things, we just want a quite life, and with the illness none of us get that. Sending you a big hug. Yvonne xxxxx

  • Hi Yvonne,

    You are right, things get so much harder when you are older, but in my mind I am still able to do it all ! I felt like me again last week, something I had forgotten about.


  • Thanks Heady, big hug received and very welcome it is too ! I sent another, earlier reply but goodness knows what`s happened to it - maybe I hit the wrong key ... it wouldn`t be the first time.

  • I hope things go ok for you, I agree with you in our heads we think we are wonder women, maybe once you get back into the swing of if, you may feel differently, and be able to carry on a bit longer, our get more help, so you can have time to yourself. Love Yvonne xx.

  • Oh dear NanBabs, that's why I've declind respite. When C has been away In the past, I have found it very difficult when he has returned and I'm concerned that if I had a week on my own again, I may not be able to cope when he comes home. The first time he went away, he came out barely able to walk. The second time he became incontinent and the third time, even though I took him out daily, I found it hard to adjust when we got home. I'm not saying others shouldn't have respite. I think it is important to have time away from each other but I do it regularly during the week. I'd love to be able to go away from it all and do what I wanted, when I wanted but I know me and even though I love my hubby dearly, I'm not sure I'd want to come back.

    If you do have to make that very difficult decision I hope you will feel at peace, knowing at that time it is the best for both of you. I can't tell you not to feel guilty, hurt, upset as these are natural feelings and we would probably all feel the same in that situation but I do hope that if the time comes, he will settle quickly in the right place for him and you will soon get over those feelings and know you have done the best thing.

    I'm hoping that you soon get back into the swing of things again and don't find it all to much.

    I'm really pleased the week went well and hope you have lots of tales to tell P of the things you got up to.

    Sending you a big hug.

  • Thank you so much NannaB, as usual you have found the right words and have summed it all up perfectly.

    Although physically things are difficult when P comes home - just like you said, barely able to walk and incontinent, I feel emotionally much better i.e. I don`t feel like screaming and yelling at him (not just yet anyway !) It is also difficult to get him back into routine with the morning carer and daycare.

    I have enquired with the homecare company if they can provide some help at night getting P to bed. If I can have 20 minutes of peace at night the same as I get when they come in the morning, it might help me cope a little longer.

    We are still waiting for our second CHC assessment - we first applied in December and passed the first assessment in February !

    The big hug was received and much appreciated.

  • I think I would ring Social Services and tell them how P has changed. Once our CHC was started the assessments were very close together, only a few weeks apart not months. Lots of them but it wasn't drawn out. They may need a reminder. We can get lost in the system and if we don't confirm things are still in the pipeline, things can get messed.

    I hope you hear soon.


  • You should not be waiting this long for CHC decisions! You need to push them. PSP is hard enough without having to worry about filling in forms and getting other people to do their jobs! I know CHC assessments usually take weeks.

  • have you got hoists and all the aids needed installed . once I had these O found everything so much easier .

    I am sure once you make the decision it will be the right one for you .

    we are all very different and have different coping strategies whether the sufferer or the carer , both are sufferers .

    big hugs xx

  • So sorry to read about your situation. We are not at that stage but when people come who haven't seen him for a while they are shocked and say they wonder how I manage. I am sure that if I had a taste of how my life used to be it would be really hard to come back. Its not just the hard work but the loss of C as the person he was that makes it so lonely. I should add that C is always patient and loving and appreciative but he is not the personality he was.

    I hope you are able to resolve this . Try not to feel guilty. You are human after all and if you collapse you won't be able to care for him anyway.

    We all dread how the end will be, don't we ?

    Love and hugs, Jean x

  • Thank you Jean, people say the same thing to me about how shocked they are to see P like this. In fact we have several friends who ring rather than visit because they don`t like to see him.

    Even the carers at daycare have told me I deserve a medal ! Sadly, medals are not what I want - or need.


  • I know people are being kind and genuine, when they say how well you cope. But don't you just want to poke their eyes out! I keep trying to say to my family, I find this very upsetting. We have no choice in what we do. Every single one of us, feels inadequate, frightened and constantly losing the plot. How can you get a medal for that?

    Lots of love


  • How true that is Heady, even a year ago I could not have imagined the things I do now on a daily basis !

    I am sick and tired of having to arrange everything myself, I would love someone to come in and take over - make decisions for me and even make me a cup of tea ! Never thought I`d be saying that either as I have never taken kindly to being told what to do.


  • Nor me!!!!!!!

    Lots of love


  • It`s not a medal I need it`s a miracle !!


  • If you find one, let us all know. Think we all could do with one. Doesn't have to be big miracle, just somebody, who knows what we are going through, would be huge!!!!

    Lots of love


  • What a difficult situation to find yourself in, one you can't sit on the fence with! You have to decide which side you think will be the best for both of you and that I'm sure isn't easy. As you say, there is a limit as to what one carer can do and the time must come to most carers of PSP sufferers when that awful situation arises. My husband still in fairly early stages and I can only imagine how you must be feeling. Take care. Kate

  • Thank you Kate, all the support I receive from the site helps a lot. I have just spoken to the daily homecare company and they are unable to provide evening care for at least a fortnight !

    One step forward and two steps back - that is what it feels like !

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