I don't know what to do with D. He is now walking around with his eyes closed. If I am on the phone or in another room he keeps on screaming my name. He isn't eating much, Dtr told me to put him on probiotics. Pt came this week for evaluation and then reg one came to work with him but he is so weak he can't do much. He sits on the sofa most of the day with his eyes closed except when its time to eat, which as I said is not much. The social worker is worried about me. I won't leave him alone with someone he doesn't know and an aide can't come until the regular therapy is over. My chest has been hurting all day along with my back and shoulder. Because he said if anything was going to happen he would rather be home and not in rehab. His heart is very bad and I am sitting here wondering if I am going to have a breakdown. He is not making much sense and asks me the same thing over and over. I am sitting crying, don't know what to do.

48 Replies

  • Audrey, possibly you should be checked. Those can be heart attack symptoms you are having.

  • I know jmhk which is scaring me even more.

  • I feel like that a lot lately. I tried to search out a support group with no luck. It does not help with lack of sleep. He wakes me 3-4 times in the night to go to the bathroom. We finally put the pot beside the bed. My heart is with you girlfriend.

  • No support group here either. I just don't know how to handle him which is so frustrating. Back to you girlfriend

  • This illness is a very lonely place isn`t it ? There seems to be no-one around when you need them most. I have had more desperate, depressing days spent in tears in the past 12 months than in all the rest of my 70 years ! Tiredness is certainly one of the worst feelings.

  • You are so right NanBabs.

  • Get yourself to a doctor, Audrey. Jmhk is right, your pain could be a sign of a heart attack. Leaving him with someone he doesn't know for a while isn't so bad, but you don't want it to be permanent! And caregivers too often go first.

  • On Friday night as I was helping C walk to bedroom he fell and took me down with him. I have hugely swollen right knee. Somehow hobbled through yesterday and after I got him to bed last night I sat here with swollen knee elevated, looking at curtain and pole he'd brought down just before bed, thinking of two broken chairs sitting on drive outside and asking myself just how much longer I can carry on like this. I know he doesn't damage things, and me, deliberately but he is the cause. This morning I feel a bit better after 11 hours sleep and swelling on knee has gone down a bit. My dughter arrives Tuesday evening so I've decided to wait and let her understand situation and see what she thinks. I did promise to look after him at home to the end, or until he was so gaga he wouldn't know the difference, but that is starting to look impossible. However, on the bright side says the eternal optimist which is the real me, Friday night's fall was yet another unofficial bone density scan - I passed.

  • This sounds like our situation 18 months ago. I bought a stair lift as C fell backwards when I was helping him upstairs and it was miraculous we didn't both end up in a heap at the bottom. C broke two dining chairs and pulled down the curtain pole and destroyed many other pieces of furniture.

    All I can say is if you manage to carry on, things do change. C can hardly walk now so nothing gets broken. There are other problems, incontinence, choking etc but there are things to help with most problems. It's the walking and falling that drained me. I was just listening for the crash most of the time.

    Don't forget he probably won't go "ga ga" even though it may appear he is. C doesn't speak and doesn't respond to questions immediately. He even has problems with thumbs up and down sometimes now but every now and again he will astound me. Last week I was chatting away to him as I always do and said I wish I could remember the name of a woman we had spoken to the day before. Very clearly he told me her name. His eyes were still closed and prior to his reply he appeared asleep. Whatever he looks like and acts like now, I know he is still the same man I married 43 years ago.

    I hope your knee soon feels better and it's good your bone scan showed nothing bad. I also hope you can get help to assist you to carry on but you will know if you have had enough.

    Take care of yourself.


  • Thank you for the reply, it really helps. We already have the incontinece and the choking and I can cope with those. After a pill-induced good long sleep I have decided to buy a wheelchair asap. It seems a big part of C's problem is denial. Maybe being in a wheelchair will help him accept the situation. I have been holding out on buying one as 'walking' is his only exercise and I worry that total lack of exercise will only lead to other problems. I haven't actually had a bone scan - falls such as Friday's which my bones withstand convince me I don't need a scan! I do feel better today and shall try and soldier on. My daughter arrives in just over 48 hours - having counted months, then weeks and sleeps, we are now down to hours. I can't wait.

  • I bought a wheelchair but like you, wanted C to have exercise so when we went out I let him push it until he got tired and then I pushed him. I had to keep my ha nd on it to assist with steering but he was able to push it for a long time. I also got him to get out of the chair and push when we were going up hill.


  • We bought a walker, that converted into a wheelchair. Nice and sturdy for walking. A bit hard for me when pushing. But it did mean, we could go places and go further, not having to worry if S got too tired. All fine, until last week, when coming down a slope, S went flying out of his seat. Left most of his face on the path! S fine now. NHS, have given us a wheelchair. So walker going into moth balls. Did get us through this last year! So grateful for that.

    Lots of love


  • Can't push a wheel chair with him in it, much less get it out the door. He is now decided he doesn't want much to eat and if I put it in his mouth he spits it out. He is calling me again when I am now to come and be with him. Has a Dtr apt tomorrow but I am so exhausted don't think I will taking him.

  • That is a very good point, NannaB , about them still being aware of things.

  • Keeping your sense of humor, I see! That is a good sign.:)

  • Please try to look after yourself, so concerned in case there is an underlying problem. Easier said than done I know. The problem is that we don't want to let them fall, and instinct takes over. I have been told to let Steve fall. However can't be done as I immediately jump in to stop it, as I am sure does everyone. Wish I could follow the manual!!

  • Actually the long story of what happened on Friday is that I was walking C from behind as I always do, my hands in his armpits. He suddenly lurched forward, I realized I couldn't hold him, let him go, then tried to nimbly step over him when he grabbed my right leg and brought me down! So you can't even win when you follow the rules!


  • Hey, what manual? ??????.?

    Lots of love


  • I think this forum is the manual in the making!

  • That sound like a recipe for disaster!

    Lots of love


  • Put it this way, and I'm sure you know it, if anything happens to you, then it is even worse for your husband. You must see to yourself. Get help. Tell the doc. And let your husband know that you need some help so you can keep helping him.

    You need to survive. I don't know where you are, but call on every resource you have to get help for you. There is no cure for PSP, but we must not let it kill the carer as well.

    Your are not going crazy, you need physical help. Pick up the phone.

    I got to a stage where it seemed like I got rooted to the spot in the garden and couldn't move. Our loved ones need us,and we are there, giving everything, but we need to survive for them and for ourselves.

    take care, and I hope to hear that you get the relief you need. x

  • Audrey look after yourself, you need to let people in to help you, Don will be fine, you MUST look after yourself. pattz you too, not long until your daughter is there, I bet you are counting the days.

    My son said to me also if dad falls you just have to let him go, otherwise you could both end up hurting yourselves, it is hard, but I think it is a lesson to be learnt, by U.S. All . They don't fall over that much now, because we are there with them.

    Audrey George keeps calling me all the time, worse at weekend, and saying help me help me, it is driving me crazy.

    Audrey please take care of yourself, sending you a big hug from wet London. Yvonne xxxx

  • Hi Yvonne,

    P keeps calling me too and says `help me` a lot. I dread weekends (no daycare) and Bank Holidays are a nightmare.

    I can`t do anything while P is around, I will sit watching TV but as soon as I go to fetch the washing in (he can see me in the garden from his chair) he starts calling for me ! If I sit using the ipad he admits he tries to distract me as he doesn`t want me to use it ! As soon as I go into the kitchen to prepare a meal, he `needs` something to bring me back into the room with him and yet he is bored as he won`t watch TV much or look at the paper .... or do anything really.

    He doesn`t talk to me while I am with him, yet he still wants me there constantly.

    It is very wearing isn`t it ?

  • I asked my husband a couple of years ago, why he keeps calling me and wanting me near him. He said he was scared when he was on his own and couldn't hear me. I bought a baby monitor and showed him how I was always with him even if he couldn't see me. If I see him looking anxious I can talk through the monitor. It's not a total answer but it helps a lot.


  • Good idea NannaB. I find that if I want to watch a particular TV programme, he always wants the toilet or anything just to bring my attention back to him.

    While I was cooking dinner tonight for one son and grandson too, P `needs` the toilet (he doesn`t) but I can`t take the chance that he might !


  • Since PSP, I've never seen an episode of Casualty or Holby City without being interrupted, sometimes toilet trips (even though he may have already been), coughing or needing something. I never get a chance to watch catch up and they are interrupted as well. Tonight it was while they were recusitating Charlie. If you don't see it you won't be interested but if you do, you may be as relieved as I am.


  • I don't remember the last time I watched TV. Going to call Dtr tomorrow since his lack of eating much is making him more weak or is it his heart. I don't know.

  • Of course I didn`t get to see it, but I`m glad Charlie survived !!!

  • That's an idea I might try NannaB.

  • I actually thought about getting D his own Kindle tablet. It would possibly be a disaster?

  • Have a Kindle and he doesn't touch it jmhk

  • Kind of what I figured. Not worth the money I would spend on it for him. He has never been much of a computer guy.

  • Neither is mine a computer guy.

  • My husband has his own cell phone. He text me, one letter, when he needs something. He also wears a monitor system around his neck that he can push if he falls. I like the idea of a baby monitor. I can see when he has his thumb up. That usually means yes, or I need you which is all the time. I get very frustrated because I cannot get one chore done without his calling me.

  • Very, I am completely exhausted. We have no daycare so its 24/7 for me.

  • 24/7 for me too. I cherish the time that I get to spend with grand kids. They only live a mile from me.

  • Yvonne there is no one who can help me. My daughter works and since he is getting pt,ot and a nurse once a week, I am out of luck. He is calling me again. Think I am going crazy. Hugs back from rainy Fl.

  • I think we are all going crazy with you Auddonz but we seem to continue to find the strength to carry in . like Anna said once you get any aids in place and they are walking or trying to walk in a lot of ways it does become easier .

    I still carry the scars of helping John John and down Stairs and our front steps . looking back I don't really know how I did cope . my back and neck is now constantly stiff and painful .Once we got the excellent OT we now have so arrange to get the aids we needed in place .

  • cabbagecottage, one good thing today. The VA came and they are going to put in a ramp at the front of the house actually 3, a small one where the door opens and one inside the house where there is small piece of wood separating the front from the back, if that makes any sense. Two more grab bars and a Tub chair board, all gratis. The front one leads off the porch and have to figure out how to work it.

  • I dont know what to do either, I feel like packing my bags and running for the hills. They could bring down an entire empire if you let them.!!!

  • Please think about yourself for once. If you do become ill, D will have to be looked after by someone else anyway.

    Contact a doctor soon for both your sakes.

  • I agree with all the above comments get yourself checked out not just the heart but the knee and other aches and strains. As my GP says without me who will care for M to the standard and comfort she needs. Agree about the wheelchair but also check out a "Sara steady" from your local OT. It means that M still can attempt to stand up by herself but once standing she is supported and I can then push her round house, when I get level access sorted I will get it outside. leave repairs to your daughter.

    Best wishes get better soon Tim

  • Audrey, you HAVE to get help NOW, TODAY!!!! You say, YOU won't leave D on his own, with someone he doesn't know. Listen, he will be fine! If you carry on like you are, he won't have any choice! It will be you laid up in some hospital, D will be in a care home. If the authorities have to put him in a care home, you will have a terrible job getting him home. You will have to prove that you are 100% fit, which one of us, over 60 can prove that!!!!

    We all have to manage this life of ours, very carefully and waiting for a crash to happen, is not managing. It's failing, big style! I know, I waited to crash, before accepting any help. Thankfully, not too much damage was done.

    Please, please phone the doctor now! Get help, in what ever form you can. Of course, you won't know these people, but it doesn't take long. We have a lovely young lady, that comes in now, to sit with S, once a week. Even the puppy gets excited, when she arrives! None of this is perfect, it can't be, but we have to accept this is how our lives are now. PSP has made sure of that!

    Sending you lots of love and a big hug


  • Dear Auddonz,

    You sound in such desperate need for help I looked up to see how far you are away and found that it’s over 4000 miles so I am unable to offer any practical help. I’m driving over a thousand miles next week for purely social reasons that I would happily have exchanged to give you a hand.

    You are clearly at a crisis point and once over, whatever the outcome, you need help to find a permanent solution for both your sakes. Call on family, friends, neighbours, doctors, the hospice service or any resource available locally. Unless you are truly in the back and beyond there must be something or someone to turn to, we all need help on occasion.

    I received an email today that had an attachment that used the analogy of holding a glass of water to explain how stress increases with time although the burden remains unchanged. Simply that held aloft for a minute proves no problem, held for an hour and your arm aches, held for a day and you may suffer damage. However if you are able to put it down occasionally then you are able to carry on for increasingly long periods. I thought it explains the function of a little help or a period respite very well. It then occurred to me that in the case of someone caring for a PSP sufferer the analogy should allow for someone sneakily adding water to the glass until it’s the weight of a bucket!!

    On a lighter note, in the same email, I saw something that my children may consider appropriate for my epitaph “It may be that your sole purpose in life is simply to serve as a warning to others”!!

    I do hope you are feeling a little better and have help to source the support you need.

    Best wishes, Jerry.

  • PSP is deeply painful for the sufferer and the carer.

    Loosing the one you love as they cognitively diminish... Are they the one you once loved?

    I think so.

    This is what we signed up for. But we did not sign up for self destruction.

    I was a sailor once. There is a thing we are taught. Do your best for someone drowning, but do not let them kill you too. Even if you have to cause pain to save them.

    I am living through something like what you describe. My heart is bleeding so badly now.

    I am a psychologist too, recently retired. I have tried so many different approaches to modify my loves behaviour. To make it work for both of us. Simply and grimly put, when the brain diminishes so much no approach to change behaviour works. There is too little processing going on.

    Get support and get it quickly. Whatever support you can get. Preferably a break.

    I too don't know if I will survive mentally.

    My sweet darling is with her sister right now. I have a three day break. First in two years. Gosh, I needed it. I as breaking.

    If I break she will die in an institution. I cannot live with that, until she looses the 'who she is' completely and even then I want her home.

    Please think about getting any break you can.

    I do hope this helps.



  • I agree with others that it is crucial that you look after yourself. He will survive .

    So sorry to hear how exhausted you are. You can't change the disease but you do have control about finding help. I know its hard but its essential that you are able to get out of the situation, even if only for a short time.

    Hope you manage it. I know how exhausting it is to be called all the time. We all crack at times !

    Thinking of you, love, Jean x

  • Hi Audrey. I know how your feel.I KNOW HOW YOU FEEL! I sit wondering what to do? All I can do is tell you you are not the only one crying baby....Kleenex Tissues Co. is really "mopping Up".....I just want you to know you are not alone...But I am so tired and I so need ....I don't know what I need ......Maybe it's the full moon.....

    Big Hugs To Ya,


    Oh ya and your arm and chest pains maybe really be your heart doing some wierd stuff. Tell the doc about this one, now!

  • abirke, rested in bed all day, except for when D needed his meds or actually ate more today than he had since he came home. If the idiot PT hadn't told him he was so much weaker than when he first started working with him. Calling co tomorrow and going to rant an rave big time. Don't think I will let him in the house again. They can send someone else. Grrr, think I just needed to hide in bed and rest.

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