My partner J went into respite last Thursday at a local care home , he has attended daycare there so familiar with staff etc but after dropping him off and leaving him there I drove to the seafront and cried my eyes out.

Today I popped in to see how things were going as I miss him terribly (not the PSP) I wanted to tell him that I love him so much. He was not in a very good way although pleased to see me and gave me a tight hug. He was clean etc nothing wrong with that but I noticed he was thinner and pulling terrible mouth shapes and saliver pooling in his mouth.

I just feel heartbroken for the situation and the pain its causing to both of us. I am now back home sitting by myself feeling sad and awful such heartache I might cry again .

8 Replies

  • Aww Escada I get your sadness completely! It's so bloody hard isn't it? Rips your heart apart! How long is J in respite for? I'd ask about the weight loss and saliva and find out how much they know about Psp! In the meantime please look after yourself (I know that's hard too, but you must try)!! Huge hugs x

  • Sadly it affects us all the same, desperate to get a break from PSP, then feeling guilty and so sad when it happens! There's nothing I can say to make things better I wish I could, just try and have a good rest while you've got the chance, the respite will be over sooner than you think and J will be back home with you!

    Sending you a big hug....

    Love Pat xx

  • I feel for you. Steve went regularly into respite. It did start to get easier, but I still had to brace myself for the change I saw in him. We don't notice the every day decline, until they are taken out of the norm.

    Try to get the much needed rest that respite is meant to give you. Each tiny bit of strength you get back, means you will be able to cope with J at home, for that precious extra time.

    Lots of love


  • I'm so sorry E, you might get him a suction machine which helped B immensely. Though loud as a machinists shop, it got the work done....the pills worked for a moment but only to reduce the flow not alleviate totally . Well I hope you are getting some respite...though crying is good for you so is doing something fun and away from PSP for awhile...



  • Hi yep respite is a double edged sword! We have live in care now for respite, yes I have to go away but always out of main season so very doable. Safer all round and works well.

    Have a good day


  • John is going for respite into the hospice tomorrow for a week as I have hit the buffers. So that was the last post I wanted to read! I know I'm going to miss him dreadfully but am desperate for a break from PSP and from my parents who are very stressful. Have you tried atropine drops for the saliva. They work brilliantly on John? Xx

  • Hi am glad to hear you are getting a break I think I would be happier with the hospice as they can manage these things better than a care home can. J does go to the hospice once a week for their day services and a bath. Regarding the saliva J has used the travel sickness patches and has an appointment in May for more botox treatment into his glands. Just yesterday he was drinking a coffee and it was all just pouring back out. Not nice at all. Enjoy your break hope all goes well xx

  • Thank you. The seasick patches didn't work for John but as I say atropine is brilliant. Xx

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