Finally convinced the rehab to release him on Wednesday. They kept on saying he needs more therapy, excuse for not letting him come home. We are so happy. I know what is ahead and I am nervous and scared but he doesn't know that. Will have PT, OT and a nurse coming to our house. How many days I don't know. His balance is so off, keeps on tilting back. Any suggestions would be appreciated. He also seems to be getting weaker.

33 Replies

  • So pleased for you to be getting hubby home. If he is anything like Brian he will settle down and improve a bit once he is back in his familiar saroundings. The physio should help with the weakness and will also be able to give tips about balance.

    Lets hope you get all the help you need and then you can enjoy having him home with you. Big hugs Janexx

  • Jane I know he will settle down. He keeps on telling me he will take care of issues that have to be done around the house. I just say yes you will but I know he won't be able to. Just agree with his plans so that he won'tfeel useless. Hugs back xoxo

  • Hi don,t be scared,there is a higher power that will see you through...that balance problem will end up in a you have a walker,that helps,an emergency alarm is also great especially if you are away and he is alone,the fact you are glad to be together will get you through,try to get your rest as things look much worst when you are tired,best regards to you both,Rollie

  • Hi Rollie, how are you? Hope you are taking it as easy as is possible! My thoughts are with you.

    Lots of love


  • Hi Heady,I,m trying,it seems so unreal,my sons are still here for a few days,I still listen and reach over at night to check on her,I miss her so much,love Rollie

  • One day at a time Rollie, one day at a time!

    Lots of love










  • My one tip would be, if your husband is sleeping, so should you be!!!!

    Best of luck!

    Lots of love


  • I intend to Heady and agree.

  • I had the Devils own job to get John out of hospital but I knew once back home he would be better and happier .

    ask and use as many aids to keep safe . .I found the OT visit to be the most helpful

  • I will cabbagecottage. I will get all of the help I possibly can. I am worried.

  • of course you are , I am lucky that John has always listened to what I ask of him , When I told him he had to sit until I could help him or even stay sitting if I was out he took it on board . he knew I knew best for him . not everyone is the same though I Know hard for someone to accept . It was almost like giving in bug he had nasty falls and was more afraid of those , they made him worse after everyfall .

  • Cabbagecottage, Think Don will listen to me. He is afraid of falling, I know that. I will not leave him alone. I have done some more research and the progression is terrible. Have to stop looking it up, since it upsets me more. Take it as it comes.

  • Don't worry too much. I know that seems glib, but the progression varies widely. We had a year, two years after his diagnosis, where he was on a fairly level plateau. We traveled overseas and he climbed cliffs, although he was falling and limping in general quite a bit at that point. You don't know what will happen. But then, any of us could go at any time. Be as happy as you can be. Hang on. We are rooting for you. Easterncedar

  • Unfortunately worry is my middle name eastern. He fell out of his wheel chair yesterday and today. Praying they will let him come home. He bent over this morning to get something on the floor and over he went. Said to me they can't keep me a prisoner here. Two falls, actually more slides by him trying to get things out of reach. Waiting to hear if they will let him come home Wednesday. Everything is happening so quickly

  • hi audonnz

    many congrats on getting your husband nearly home

    i do hope he. settles down once he is home

    you will have missed him and all i can say about the falling is - have whatever grab rails installed where you can and get what, physio he needs as it is useful to be getting some exercise even if chair- or bed- based

    dp you have money to pay a carer./.nurse coming

    in on a daily basis??

    lol jill


  • Wish I had the $ jillannf6 to have someone come in daily but that is not an option. He is very happy that he is coming home. Getting him here, out of the car and into the house will be a challenge, small wheel chair or walker It will depend on whether he is having a good day or not. Fingers crossed.

  • if he wants to get home , he will make it . I am not saying it's easy , O am paying the price for all the struggling myself now .

    when John had his knee op . he couldn't even stand in hospital or get out of the chair . we found a wheel chair and they help us get him in after that my daughter em and I on our ow got him the taxi. With the drivers help we managed at home we have a flight of seven steps and a difficult doorway . he made it .determination . he hadn't been out since but he is home with me .

    where do you live. .

    we are in S Wales

  • cabbagecottage, We live in the US. It amazes me that I think of all of you as my only friends who know and understand. He fell again out of his wheel chair. He said he bent down to get something and on the floor. Praying they will let him come home Wednesday. Waiting to find out.

  • o dear , I do hope he can come home . john is very immobile but will free suddenly reach out quite a long way . It's amazing .

    once they start moving they keep falling forward .

    you couldn't make it up could you the pickles we get into sometimes . yes it is only people who love or live alongside that really understand .

  • So far he is scheduled to come home Wednesday but I haven't heard a word about when they will deliver the hospital bed. Don seems to fall backwards not forward if he falls. Bu your right once he starts moving forward he moves very fast.

  • john fell back in the first place . In generally in the tighter ares and turning , especially if arms raised . He fell backwards once taking his top off . once going cannot stop .

  • Sandra came out of hospital a year ago. She is at home, in a hospital bed. and has no motor functions. When she came out of hospital she could do small things with her left hand. but not any longer. I think the progression of Sandra's illness, CBD, is somewhat different to PSP, although there are many similarities. Having deferred vital knee surgery myself in the middle of last year, I cannot put it off any longer. CHC are agreeable to live in care whilst I am unable to manage, and I hope to resume full time care as soon as possible after knee replacement on 4th June. Graham

  • how on earth do we lol cope . . when someone else says that to me I tell them I am not the only one going through this I talk to people all over the world who are in the same boat . we just do it

  • Always been my thoughts, you do what has to be done.

  • Hello,

    I haven't read the responses yet but all I can say is:

    •your patience will be the most need.

    •things can change anywhere from one day to the next. One month to the next or one year to the next

    •if you haven't done so and he is able to speak get all his request and wishes now. If possible record.

    •never ever stop talking to him.

    •prepare your family and friends. allow them to engage with him as well but define your boundaries.

    •if there ever comes a time were his eyes may always be close talk to him and prompt him. Let him know you are about to feed him, change him etc.

    •remind him it's not his fault that he is loved. Hug and kiss often. Say many I love you's

    •if body stiffens massage his body as much as he is allows you to prior to any excessive movement, such as changing diapers

    •don't be afraid to question the nurses and doctors

    •do your own research

    •be sensitive. don't take out any frustration on him verbally of physically

    •be very patient when feeding. Depending on how far in the illness you may need to feed less more frequently.

    •not all medication work the same for all patients. when something is not working for him Talk to your medical team.

    As for you

    • sleep as much as you can

    •if you can take walks

    •find something fun to do while at home while he is resting

    •don't be afraid to ask for help

    •maintain a healthy diet

    •stay in touch with family and friends

    •be patient with yourself

    •allow your self to go through the emotions. you will feel mad, sad, happy angry and then some. It is all okay.

    •this is not your fault.

    •be patient with yourself and know your limit.

    •selfcare... shower, brushing your hair, etc.

    •There will be a time when he will not be able to say I love you, hug you or kiss you. it will feel bad but you can continue to do the same for him.

    This is all I can think of for now. You will cry you will laugh but don't forget to be patient and love a lot. we have our dad home for now but we also know that when that time comes he may need to go to the actual hospice. currently he is not well bUT we have learned so much through his journey. This is a horrible illness and I hope you, your family, friends and medical staff can work together to bring comfort to him and all those involved in his care.

    In solidarity,


  • Amen to all you have said Jessy.


  • i agree amen to all that jessy\lol Jill


  • Jessy what you wrote is beautiful and comforting. I think I know what the future will be bring and know it will take all of my strength to follow what you have said. He fell again out of his wheel chair at the rehab ad I am praying it will not hold up his release. He is so very unhappy and so am I that he is not home. Right now I am in tears since he said they can't keep me captive here. The reality is, yes they can. I always tell him I love you, send him kisses over the phone and let him know I can't wait for him to come home. Life has turned upside down for me and unfortunately we don't have any friends that I can lean on. Our daughter lives 3 miles away but she works full time, a special ed teacher and has 2 children. How much can I ask her to do?

  • use this space to vent and document What you are going through. My dad has always wanted to be home. I understand that desperation of your husband wanting to be home, of thinking he can still do the same things he did a month ago, a year ago even a day ago.

    As for your daughter I don't know if it will be much to ask and depending on your relationship with her perhaps she can come every other weekend to help or even once a month would be very helpful. I had to move in with my mom and my daughters as well as my husband. It hasn't been easy for all of us but I find comfort that my mom is not alone and I am able to spend these moments with my dad. It may sound weird but though his body is given up and there are many things I mourn about him and our relationship I know he is still there. My daughters have helped my mom so much And they bring joy to my dad. We have use this as a teachable moment about life, love, compassion and death. They are seven (twins, and they have been my dad's therapy in many ways.

    If she is not able to help I would say reach out to and see what resources they may be able to provide depending where you live.

    Please reach out anytime you need to talk.

    with much love,


  • Jessy, we all used to live together when the kids were younger. My relationship with my son in law is not the best and even though they have a 3,000 ft house under air and I have hinted it would be nice to be together again, my daughter has said nothing. The kids are 13,11 and 10 and bring joy to my husband. We took care of them since they were each 6 weeks old so mommy and daddy could work. The first house we lived in I designed and was on 2 acres on a private road. I won't go on, but ,my daughter decided she wanted to move to the other side of town which is where she works. So I found this new house for all of us that would work but after a year I decided to buy a little house just for us. Now there is still another room that is a nice size that would work for us as a bedroom den combo in her house. We will see what happens. Audrey xoxo

  • Yes we just do it, my son said to me yesterday we work, I said to him I don't work Peter he said you job is harder than our jobs, you look after dad, did not think of it, but it is true, we were suppose to retire after working so hard, which we did work hard, for a better life for our children, and us, and this horrible illness took over all of our lives, we're is the justice in that, well one day at a time, love to you all. Auddonz I wish you all the luck and I am sure once Don gets home you both will be very happy keep positive and what we all say one day at a time. Yvonne xxxxxxxxx

  • Yes Yvonne on day at a time. I am so trying to be positive. TY

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