They have decided that he needs more therapy and I can't take him home. The want to teach him how to get up if he falls by himself. I guess little 5' of me won't be able to which is true. First they said I had to have someone with us 24/7 and then changed there minds. I don't trust them at all and am curious to see what this new week will bring. thy want me to come in a few times next week to watch his therapy in progress. I already have all of the pages and notes from his last round. It is typical Parkinson's therapy and that is about it. The issue is if I take him home AMA medicare will not cover anything. He is getting very upset and depressed and I can't blame him. So am I. So in case you didn't see my last post I reported the facility for everything that I feel was not done properly. Don't know what the result will be but we will see.

27 Replies

  • If you can't beat them, maybe you could join them. It might be possible for them to help teach him to get up from a fall. That's a big deal if they can do it. Putting a brave face on it might help your husband to feel positive about the therapy. Maybe?

    This ordeal will pass. We have found that if there is no progress, Medicare won't cover it, so the facility might well decide it's more cost effective to send him home, once they have tried. I do wish you had someone there you trusted to help with the communication with the facility.

  • when my John went into hospital for a knee Op we had a similar experience .at that time although struggling with the Parkinsons we hoped having the op would help , of course it didn't. he didn't have the strength or where with all to cope with standing or even raising himself off his chair .

    hospital wards have to kept very clean with uncovered floors .

    when I went into visit I went a much as they would allow because I knew they wouldn't cope or have the time to do the things he needed . it was all rather a waste of time as it happens but we don't give in do we.

    when we first went in I had typed out a list a very long one with all the things he couldn't do or needed help with . they were brilliant and without exception thanked me for making their job easier , they knew I knew best as far as John was concerned ,

    the first evening I went in the male sister in charge called me over and asked how on earth I had been managing on my own with . I told them with practice determination and love .

    he was doing good at all with the Physio or OT and although the surgeon and nursing staff said he was ok to go home the OT in particular opulent release him . I knew he would never get batter while there and be much better at home .

    they were thinking of both of use and only doing their job telling me they could get acces to all the services we would need to hell us . she was right but I still wanted him home with me . the floors are very slippery gathered and he was familiar with things at him e.

    I did win and my daughter and I brought him him . I had even given them a floor plan of the inside and outside of the house .

    he could stand or walk in the ward but once out of the taxi , that was interesting !!!, he and we got him up a flight of seven steps and into the house .

    we did know best . having said all the . It was very very very hard but I would do it lol over again .

    don't waste the time and energy getting knee ops

  • TY you cabbage cottage.

  • It is unfortunate that there is no one there I can communicate with. They all ganged up on me yesterday, the bottom line being they are afraid that if he should have a set back at home they will be blamed and I will sue. I know this disorder is progressive and have told them that a million times. My daughter called them yesterday when I told her what was going on and finally got out of them that if I go to his therapy sessions this week and observe they will let him go home at the end of the week. Why is it I don't believe them easternceder? My pressure is up and I walk around with a horrible headache all day. So tired of fighting the system.

  • I am feeling for you, believe me, but please take some time this week while your husband is in care to rest and gather your strength. When he is home you will be on the job every minute. Burning yourself out at this stage will make it much harder. You need to take a longer view. Maybe you can get out for a walk or visit friends. You might also think about whether you need to put away any breakable treasures you have, if your husband is ambulatory. Breath deep. Let this fight go. There are more on the horizon. Good luck.

  • Easternceder I am trying so hard, some good days, some bad. Last night I woke up at 4, couldn't fall back to sleep and for some odd reason decided to take a shower and wash my hair. I think it relaxed me for a while and I dozed off again thankfully. I have moved things around in our house already so that he has a straight path from the front to the back. Thinking he will be in a wheel chair, afraid of a walker. Just got back from rehab, it is our 56th anniversary, bought him a cupcake which he loves. Stayed about 2 hours and he wanted to go to sleep. His comment short and sweet, go home. This coming week will be hectic since I have been told that I have to attend his therapy in order for them to release him. Praying they keep there promise. He so badly wants to go home and I want that as well. So much to get ready, people just don't show up to put the grab bars I have already bought. TY

  • hi auddonz

    you are in florida

    do you know on thsi site a great guy called jImbo whose wife sharyn died of PSP LAS TYEAR=

  • No I don't

  • Finding all of you is the only thing that is keeping me sane.

  • easternceder he is coming home Wednesday. He is so happy and so am I. Nervous but had grab bars put in the half bath in our bedroom, one on either side of the commode. The bath backed my closet which had a sliding glass doors. Had them pulled out and now have a 6 ft steel rod where the doors were that he can hopefully reach from the doorway to the bath and hang on to which will take him to the commode. Other bath, just a grab bar next to the commode. Couldn't figure out where to put another one. They did teach him how to get up from a fall but he seems to be getting weaker and I don't know if he will be able to. His arms and legs are still strong. He is 77 and a fighter and so am I. Any thing else you can think of will be appreciated.

  • I am glad you will soon have your husband home. It's difficult to know what of my experience might be of use to you. This disease takes people in such individual paths. Not to worry you unduly, but I had occasion to wish my medicine cabinet were better stocked, especially with larger bandaids. I also wish I had really cleared away more of the things I cared about. My dear guy has found things to break I didn't think he could reach, and has broken several chairs, a side table, and such. Luckily he recovers very quickly from the bruises he acquires so spectacularly. We make sure we always have ibuprofen and such on hand. Do think about getting your own support system in order. You will need help, even if just to get out on your own sometime. Good luck. Easterncedar

  • There is no one I can get support from other than pt, ot and a nurse. How many days they will come, prob 2 days each for about an hour each. He is on warferin for his heart and I have no intentions of leaving him alone. My main concern is his balance which s not good now and getting him out of the hospital bed and into a wheel chair. Think a walker will be tricky now. We are not kids, he s 77 and I am 76. I am not that weak so hopefully will be able to pull him up in bed when he is frozen. Fingers crossed. Has a clear path from front of the house to be able to go into the other rooms. Furniture is solid wood and don't have small things on the floor that he can break I don't think. Have to look around again. TY for your help.

  • Well, the folks here are a support system of a kind, so do keep in touch with us. My family is all far away, and so is his, but we do have a couple of dear friends who have stepped up and volunteered help with clearing snow, taking him to appointments when I am at work, making calls for me. I am getting better at saying "yes, thanks." Rest up. Take care of yourself. Best, Easterncedar

  • Get a bed grab rail , that will help when getting him in and out of bed as well as him raising himself or turning . hope your bed isn't too high . my husband ended über the dressing table twice his feet lost a grip and he slid .. if he gets any worse they might arrange to get you a wheelie commode . We used it for me to push him back and gore the bathroom . U can use them straight in thshower if access is right .

  • The bed comes with a rail on either side. The chair you are talking about is called a 3 in one I think. No shower, tub only but there is a chair for that.

  • Hi, I'm in the UK so things are different here but I hope they can teach him to get up. My husband couldn't, even at the quite early stages. He had absolutely no idea, even after being shown many times. It will be interesting to hear the results.

    I have found that many professionals don't like the fact that we may know more than they do about PSP so I am now very tactful as to how I approach things. They may pick up that you don't trust them so it may be better to go along with them unless something happens that you are really against. I have nodded and smiled at some suggestions which I know are ridiculous and done my own thing at home. I'll always do what is best for my husband and some suggestions have been helpful but certainly not all.

    I do hope he goes home soon.


  • I will keep posting as things progress. I have been telling him for years, since I have trouble getting up when I kneel down to do something, roll if you have to to the nearest piece of furniture to pull yourself up. His heart conditions do not allow him to lift more than 50 lbs and I weigh 112 or 10 I think. I am little, 5' tall so he has seen my difficulty in getting up on my own. Hopefully it will work for him.

  • Hi, I agree that your husband learning how to get up by himself, is huge! More important, you must be there to know what they are saying, so you can carry on, when you do finally get him home. S has been falling for about four years now. Before I was really aware of the falls, I was teaching him how to get up off the floor. He was recovering from a knee replacement op and I guessed it would be a good exercise for him. Funny how looking back, I was already putting things in to practice, long before I knew about him even being ill! Shows that PSP had all ready entered our lives, without us being aware! Anyway, S did not have a clue how to get up off the floor, so we kept on practicing, finding a way that would work for both of us. Even now, when we "practice" this twice a day, I still have to tell him how to get up, with just a little help from a friend, but he does manage it, without me having to do any of the hard work!

    So my advice, for what it's worth, is like NannAB says, go, smile very sweetly and grab any bit of knowledge you can, that will help you afterwards. Yes, most of it will be rubbish, but even that you can adapt to suit you and your husband. PSP is a strange disease, what works today, may, or should I say, will, change tomorrow, so the more clued up YOU can be, on different methods of getting him up off the floor, will be invaluable.

    Please try and think of this therapy, as something for you, for you to help your husband. Go in everyday, be there for every therapy session, ask millions of questions. If this was happening in England, your husband would be discharged so quickly, one thing the medical "experts" hate, is someone trying to get involved and demanding answers.

    Best of luck, hope you get him home soon.

    Lots of love


  • Thank you Heady for your advice. I have noticed that even getting out of a wheel chair sometimes even different combination of numbers will work on one day and not on the next. I am wondering if he has this for years when he would check himself out of the hospital for other medical conditions he has without authorized medical advice or AMA. Was that the start?

  • When getting into a car use a plastic bag on the seat it helps them slide the,selves along or turn .

    if he falls when he turns or lifts his head , to help him traipse further . place an upturned chair , that's at an Ange , push the back of the chair underneath their back , can even put a cushion in it . This helps support than until they get a second breath

  • We have a machine connected to the Kirklees falls team. They turn out every time the button is pressed and are wonderful. They place a plastic board under Steve then turn the machine on which lifts him up then they take him to bed or chair etc. It only cost £20 a month for this service and is a godsend for when he falls. Maybe you could enquire if you have this service locally. The community matron put us in touch with this service if that helps.

  • Not available in the US showaddy

  • Where is that , where do u live .

  • We live in the US. Florida to be exact cabbagecottage. Where are you?

  • you really have to fight for everything for them don't you . takes a lot of effort and spirit .

  • we live in the South Wales UK

  • it's actually Parkinsons Awareness Week this week . acts of party's and events going on to draw attention to these dreadful illnesses.. the theme this year is STRICTLY DANCE .

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