My love has been falling more and more and I am petrified that he will break something again. I still can't get more than 2 hours a day of help at home. The last place he was at released him and when I called them about long or short term there they refused and lied, I don't know what to do other than spending my day and night crying. Advice please.


64 Replies

  • I am so sorry for you. I think (guessed) you are in Gainesville FL so I did a search as a start.

    Does his GP or neurologist have any suggestions? Do you use Angie's List or something like it? They might have recommendations for you. I wish I could help more.


  • If you live in Gainesville, I have some phone numbers for you. i live in Vero Beach where I attended a Fearless Caregiver Conference. Disability Rights Florida has lots of info at 800-3452-0823. A very impressive lady from Tallahassee spoke to us so I am quite sure they can give you some assistance. There is also an Elder Hotline that can help in several ways. Their number is 866-684-5885. Also if you are computer savvy-which I am not-you can go to the Fearless Caregiver facebook page. If you are in Gainesville I assume you know about the Center for Movement Disorders associated with Shands hospital. My husband has been seeing a Dr. there whose speciality is atypical Parkinson's especially PSP who is absolutely fantastic. Shands should have resources also. If you want a number there, get back to me and I will find it for you.Best of luck although I know how hard it is to make calls, etc. when you are feeling like you are. Believe me. I have been there.

    PS I have a sign that says I Am a Fearless Caregiver Don't Mess With Me that I have posted on our front door!

  • Looks like you have a handle on the options....I am in Los Angeles and have not begun to research, but I will look at the facebook page. Thx. Love the sign. I think it would make a great T-Shirt.

  • Oh! you are right. It would make a great shirt slogan.

  • marph, I am getting some help from elder options but not in home. They don't have the options $ wise. He was diagnosed at Shands at the Center. i think it was Dr Okum or Okun., but since I can't drive that far, they recommended a Dtr here in Ocala who specializes in PSP. She has no suggestions. I just tried Elder Hotline but they are closed until Monday, I feel like the monkey in the middle with no where else to go :( Thank you for you input.

    Audrey (aka Auddonz)

  • You are indeed lucky to have a Dr. locally who knows anything about PSP. None of them here do. I drive 3 hours to Gainesville to see A's doctor. I know that time is well spent. But I am afraid he can't make his appointment in April because of the progress of his disease. Can't possible imagine a night in a hotel room in a bed with no bed rails. He would be on the floor within minutes. There also is a CurePSP support group in the Orlando area. We have never attended because I felt a 1 hour meeting couldn't be worth a 4 hour round trip! hope you can get hold of the Elder Hotline next week.


  • Wow you really got your resources down...I used to tell my kids "Use your resources" with regard to writing a book report (the back cover of the book) or if you just don't know how, ask the teacher or the guy with his pencil to the paper...don't just sit there and get in trouble.....

    Anyway it sounds like you are asking the people who can help you amen.....You my dear, ARE fearless..... :)



  • Thanks for the encouragement. Sometimes these caregiver conferences are quite helpful and others aren't. The problem in that Arland is so far into this vile disease that many of the resources aren't meaningful. My daughter went with me and picked up many, many pamphlets that I didn't. She had those in the bag of goodies we got.

    Happy New Year to all


  • Well you have to sort through the info to find what works for you....Keep going and maybe you'll be the guest speaker!



  • Christine47, All they say at this point is put him in long term care. They are worthless.


  • So sorry. Why can you not get any help? It is a hassel . Where are you ? You never take no for an answer. Keep calling and researching on line what services are available in your area. You also may qualify for self managed care. Than you can hire your own staff or use the money to contract with agencies of your choice. Long term care is an option. Falling is just as likely in long term care unless they drug him . You have more control over that at home. If you could get a good nights rest you would be so much better able to cope. Do you have family services social worker that could help you find options? Most hospitals also have social workers. If you can get your doctor to admit him you can access a social worker who can work with home care to help you. Call 911 if he falls again and refuse to take him home. They will have to deal with the situation if there is no one to look after him at home. That is how it works here in Canada. My friend had to do this with her dear man .You need a break and will feel better able to cope and make decisions .Enlist the help of any one you can. Call your Alderman or whatever you call them where you are.

    You have more personal power than you think. Hugs and prayers for strength and clarity in what you must do. Kevin has been a great resource to many on this site as well. Look up some of his posts. Hope 2017 is better for you and your guy. It is okay to have a good cry and rant. I have done my share during the past month. I have finally became angry and that snapped me out of it and I have my fight back until the next time. We keep trying different ways to cope. Looks like things may get better in January. Hope springs eternal.

  • Noella, The only help is 2 hours a day 3 days a week. Have PT and OT and a nurse that comes once a week. But its not enough time. I yell at everyone I speak to but they all say the say things. They don't have the $ to give me more time and unfortunately we don't have the $ to pay for it ourselves. They charge $20 an hour and you must take them for 4 hours a day. Not in our budget unfortunately. I may put him into the hospital tomorrow since I can't move him an don't know what else to do. The thought of putting into long term rehab is killing me

  • I also find myself in a predicament. Get 3 hrs a day now and have been approved for some one to put him to bed at night. Today it was impossible. But we are still here together . God bless you in the decision ahead of you. You will know when you are ready. You have done a great job and will continue to do so no matter where your loved one resides.

  • Noella21, I wish I had 3 hours a day but don't. Putting him to bed would be wonderful.


  • It was a big fight to get it but I think my stage 4 breast cancer having spread to my spine and my fracturing several vertabrae may have been a determining factor. They would have to find places for both of us. There are waiting lists every where. It still may come to that if the putting R to bed does not work out. One of our girls got hurt on her first day and now WCB is coming out to see what is involved. If a 71 year old lady with spinal fractures can do it surely healthy person could do it if trained.

    We have a ceiling hoist and I do not mind helping to guide it. One thing gets solved and another pops up. It goes with decease. Like you I dread the thought of giving him up to a care home. R can wind up 100 kilometers from here. The roads in winter are pretty bad here. It has been snowing since Christmas. I will be glad just to make it through the winter in more ways than one.We will make it together. This site is great for advice and moral support. I still hope for some good days now and again coming our way.Hugs for both of you and answers to your situation.

  • Noella21, Oh my goodness your back is worse than mine, compression fracture just recently. Stage 4 breast cancer to add to the mess for you. I just spoke to the hospital and he still does not have a room but is being admitted. So far all they can find is that he is dehydrated and they are giving him IV for that. He has been choking on fluids but the thickener is an easy fix for that. He hates it though. They did a cat scan what part of his body, I haven't a clue and it came back negative. Hm, ceiling hoist, have to call the VA about that. With enough gadgets maybe I can keep him home BTW, I am 78. Hugs back to you.


  • Audrey they will likely have one of theseveral ceiling hoists at the hospital .Can you ask if you can get the OT to demonstrate it. I had to take Ron to the OT department for him to try it. Some people are freaked out by swinging from the ceiling. In that case it will not work for you. You have him in hospital insist on speaking to social worker and explain about your back and insist that they help you with either resources that will help you at home. Eg some one to get him up in the morning and pm care and put him to bed for you. If you refuse to take him back the ball is in their court and they have means and resources . They will likely set up a team conference with the family and care team. I will try to send you pictures of the lift in a seperate message. I am not good at this. at at this and will likely loose the message.

  • Noella21, Thank you for the info, will look into it tomorrow. Today he was supposed to have more tests but he was completely unresponsive most of the day.


  • I am so sorry.My husband has just had a bad week . We have had so much new staff. He appeared unresponsive would nor even attempt to stand or bear weight. Iam not sure if he is ignoring us or in a zone. Today our regular worker was back and he was his old self and responded to all her prompts. The brain and this decease is so unpredictable.Hope tomorrow is a better day for all of you.

  • That is exactly what my hubby is doing but there was no one new at home, just me.

  • Hi I thought my situation was bad but you are trying to cope with more. My thoughts are with you xx

  • Thank you Ovation1.

  • Auddonz not much help from this side of the pond, but best wishes and good luck in finding more long term care. Crying is better than bottling it up inside which (typical man), I did almost go insane before accepted a crying time is essential for mental stability.

    Again hope you find a solution soon Tim

  • Don't know how to advise from UK, but with you on the crying, don't think there's any days I don't!,

    I hope you get something sorted,its hard enough in the UK, where we supposedly have a NHS system and social services

    Lots of love

    Debbie xxxx

  • Thank you Debbie, I think I have exhausted all of my resources. Called a million places and all they keep on telling me is they don't have the $ to give me any more help than I am getting now.

    Love back,


  • Auddonz,

    Sorry to hear that.

    Can't help at all but thinking about you. Its a nightmare. I hope you are able to sort something. No-one can understand how stressful it is being " on alert" all the time. Then I shout at my poor husband and feel bad.

    You need sleep to replenish your energy.

    Big hug from Jean x

  • Jean, At this point all I hear from my daughter and her husband is put him away. They just don't get it. We are married 57 years and the thought f being apart is killing me. The minute I try to sleep he gets up and tells me he has to go potty. Now he can't even lift himself and he won't use a urinal. God knows why.

  • Its so sad, Audrey. I know what you mean. We have been married 54 years. But sometimes his behaviour is so alien to how he was that I struggle to relate to him. That is very painful.

    Perhaps your daughter has already said goodbye in her mind ?

    Chris' sister, who adores him, said " I feel I lost my brother 4 years ago ". She tells me I am doing brilliantly but rarely rings and only sees him about once a year.

    If you read past posts they say how him being in care means you can give him more quality time.

    I dread having to make that decision. Sometimes I just want someone else to have the responsibilty but usually feel others can't do it properly !

    I know I'm not helping you but I do care.

    Love, Jean xx

  • TY Jean, That is what I am afraid of but physically I can't handle him any more.


    Audrey xoxo

  • Then the decision is made for you. We are all in the same boat, waiting for fate.

    Big hug Audrey, love Jean x

  • Jean, He is in the hospital and not responding to them. I couldn't wake him up when I was there but they told me earlier he worked with PT and walked 200 feet. I don't get the state he is in now. I tried everything I could think of to wake him up so he missed some of his meds and they are putting him back on IV fluids. I am still trying to get some more help for us and then if I do, I will take him home. That is really where I want him to be. We will see what tomorrow brings.

    Big hug back to you and love,


  • What a confusing mystery this disease is. I understand you wanting to care for him if it is possible.

    Thinking of you, love, Jean xx

  • Jean, he was much more responsive today but I have to get more help in order to take him home.

    Thank you for thinking of me, love


  • I'm so sorry you are going through this with so little support, Audrey. It will take effort to get advice, but the Alzheimer's group as Christine mentioned is one place to start. Call hospice, ask for recommendations. Florida has an agency of elder affairs, with 11 local offices. Sorry, I have trouble copying links, but it's not hard to find. Hang on, you aren't alone!

  • EC, I have called them all but they don't have the resources to help me. I was told by the VA that they can only give me the 2 hours a day which they cutting to 3 days a week because they don't have the $. Had hospice here, it is either send him to one of there facilities or send a nurse here twice a week. They will stop all of his meds and that's it. My back is acting up trying to help him but I am not strong enough to lift him.

  • I don't understand why the VA here is so good and yours is so bad. Is there no one in charge of your case to talk to?

    But if hospice offers a facility, please at least consider it. Continuing his meds is not a reason to drive yourself to death.

  • ec, from what they told me at the VA there is more $ up north than down here in Fl available from them. Straight from the VA Dtr. Yes I can put him in hospice but will prob put him in the hospital tomorrow since he is frozen stiff and I can't move him. Hurt my back trying to get him to just sit up in bed. Stopping all meds is what they will do in Hospice and I can't do that to him. The thought of being without him is killing me. We are married 57 years.

  • My husband is on Hospice at home and they DO NOT stop all drugs. In fact, Medicare pays for all drugs related to his PSP. We now only pay for unrelated PSP drugs ie. blood pressure and high cholesterol. I don't know where you got the impression they stop all drugs. He must sign a DNR but that means that no heroic means will be taken if he has a heart attack, etc. Perhaps you can talk to hospice again or let me know and I will have our case worker find out what she can for you. PLEASE don't give up.


  • Another 2 cents from me. Hospice can also offer volunteer assistance. Companionship, shopping, etc. Another plus for them.marph

  • marph, They only offered a nurse twice a week and that was it.

  • That is what they told me.

  • Still looking, all I get is they will put him on a waiting list.

  • i agree with ua ll

    lol jill


  • We were in the same position, with 24 hour around the clock care and us being there throughout the day my mother in law still fell. She would try to sit, move and roll off the couch all the time.

    We started the ball rolling a year ago when she came out of rehab, she fell off her bed before the diagnosis and broke her ankle reruiring surgery and rehab. When she came home is was clear that she needed help. The rehab opened a file with CCAC, our local community care agency, it took us a year to find a suitable home for her.

    It was very hard keeping carers in the home as she needed more help than they could offer. Her apartment was not suitable for her condition and there was not enough room to renovate her bathrooms properly. The carers dropped like flies at one point.

    I don't think putting someone in a home is the wrong decission. Her GP, specialist and the CCAC caseworker all told us that we should of done this months ago. We wanted her in her own home so she could be comfortable. That was a mistake as she became complaicent and her health declined at an alarming rate.

    Now that she is in the home, a nice one too, she is getting physio daily, she is seeing other people and she is eating and sleeping much better. I have to admit the first few weeks were very hard on her, she thought we were abandoning her there. We still had carers from 8am to 8pm but now, the carers are going less, we are going daily and she is settled.

    Push, push hard, talk to your GP your specialist and any support group you can find. There must be a branch of social services in your area that can help you. Knock on doors and make the calls. In Ontario, we are very lucky to have the CCAC and doctors that work hand in hand to orchestrate this. There are waiting lists here, some up to 800 people to get into some homes, but once your in the system your in.

    Hope this helps


  • Yes we are lucky here in Ontario. I think we might take it for granted that same time of help is available to others everywhere.

  • you got that right, I dont know what we would have done if it not for OHIP. It isnt the best system in the world but it is not dictated by how rich you are. We are all treated equally

  • Wow good for your Paola! I know it is hard emotionally for both the caregiver and the patient; but I have observed in most cases on this site, when the carer starts considering this, it really IS time for it....


  • Paola, I think I have called the world and can't get any more help which is killing me.

  • Audrey thinking of you, you have been through so much lately, sending you a big hug, thinking of you, I suppose crying lets it all out, I have cried so much can't cry anymore. Yvonne ❤️

  • Yvonne, I still cry, morning,, noon and night to see my love in the condition he is in, getting worse every day and I can't help him. I don't know how many calls I have made to so many different places and there is nothing else they will do for me.

    Audrey <3

  • Oops, that heart didn't come out right <3

    Or this one

  • Audrey, I was wondering where you sorry that our first read from you is so hard let me tell you what we did....

    For us , it started off with using the wheel chair at night when he had to Pee. I did this for one reason. We had our young grandson here and B would inevitably fall crashing and waking children. So I convinced him that "riding" to the bathroom would be easier....AND IT WAS!! From then , he made the decision that he needed the chair more and more....Bruce RARELY falls anymore! I talked to him about this and like I said he made the choice and well, you know I was ready!

    What I am saying is have the talk with him, that maybe it's time for this form of transportation, or just start suggestig he use "this" and give him the chair. since he is able to get up and stand (right?) have your helpers figure out a good way to transfer him.....especially with your back you'll need training.....In fact I may talk to his homebound nurse (he has a catheter now, we see her once a month) and ask her for suggestions for me!

    We live in America where survival is with the fittest....wheelchair bound folks can be fit!~ there are transfer boards which I have yet to use, slings and other stuff I'm sure....find these out and go for it...

    I do like what Christine47 said but for me and Bruce, we are not ready for nursing homes yet/ever. who knows if and when we'll ever need this!

    Audrey, keep us posted and keep your man in the chair...she said knowing that if they want to get up they will!!!

    ((HUGS and wheelchairs))


  • abirke, He can't get up into a sitting position which is the biggest problem. I am not strong enough to pull him up especially with my back. He refuses to go into a wheelchair. Where does that leave me? I just fed him dinner in bed with the bed high so I didn't have to bend. I have tried every resource and can't get more than 2 hours a day, which they are cutting to 3 days a week. They were giving me 5 days because of my back but won't continue it anymore. I have have tried every option that I can think of but unless we were rich, which we are not, it would cost us $80 a day for 4 hours for someone to come in daily. I am so afraid he will fall again. Last night I held his hand all night to keep him from getting up since his balance is getting worse. We live in the US but the VA will not give me anything else than what they are doing now. They are the ones who send the aide, I cried myself to sleep last night, think I slept about 4 hours, if that. Will try to keep you all posted.



  • Area Counsil on Aging may be able to help you. They figure out what you need and get it to you. You may both benefit from Disability benefits. Granted I don't have any help in the house, but they have helped me in several other ways. I think if you were to tell them that he can no longer move without constant assistance, they may be able to help him. Like Paola says there is probably someone out there who will help you. The 36 ft ramp we have is one example! Do you have a hospital bed? You might tell

    I have read everyone's post,. and like Jillann said, I agree with you all!!! At least one thing darling, you are not alone....we have will be experiencing what you are going through...I know this is a Saturday and agencies are usually closed on the wkd. , but let the husband stay in bed this wkd and next week, start calling all the numbers, especially that of Marph's since they too live in Florida!

    Does he want to go into a nursing home/VA if he does not then tell him the options...start helping me get you out of bed and into tthe wheelchair!

    Take care ....of you....let him stay in bed....put on some music and enjoy the day....oh and remember the Depends



  • abirke, he is so frozen his aide who came this morning had a very difficult time holding him up. He has been in a hospital bed since he was diagnosed. His condition right now is really bad. He can't sit up by himself in bed, is starting to cough a lot and is choking on water. Have a ramp outside and a wheel chair and his walker but he flat refuses to go into the wheelchair and at this point I am not strong enough to get him in it, I want him home but can't get more than 2 hours 3 days a week now from the VA and that doesn't cut it. To hire someone the cost is $20 an hour and I have to hire them for 4 hours a day. Unfortunately don't have the $.

  • Hi Audrey, sorry I can't give any advice on resources as I'm in the UK. As for those tears, just let them come because suppressing them doesn't do us any favours. I hope Don and you get some more help. Thinking of you. Lots of love Nanny xx

  • Dear Audrey, I am sorry to hear you are having such a lot of trouble. Like the others in UK I am afraid I can't offer much practical advice as the system is so different here. Even here though it is a constant battle to get the right help as there are many different departments involved, no joined up thinking about care and very limited budgets. It seems to be pretty much luck if you find someone on your side who is prepared to help you fight for what you need. In our case the Parkinsons Nurse and Hospice were great but the GP and Social Services useless.

    It is a couple of months now since Derek died and I am just beginning to be able to have a more balanced view of the whole experience of caring for him as his illness progressed. When you are involved in the day to day hardships, frustrations, exhaustion and emotional turmoil it is so difficult to think clearly about it all. If you have to go down the route of long term care/hospice care please try not to see that as a failure on your part. It is inevitable that as someone advances in the illness, they will need more nursing than you can give alone. That will mean nursing at home if you can get the help and can fund it, or nursing somewhere where they have the expertise and facilities already. It is NOT giving up on someone if you have to choose the latter option.

    Either way, be kind to yourself. You are doing an amazing job.


    Vicki 💐

  • Vicki, I am loosing the battle and my heart is breaking.

  • Audrey

    My heart goes out to you. This is cruel beyond belief. You really shouldn't be looking after your husband. If you continue you will break something and end up as bad as he is.

    I know exactly how you feel as do many others. We have had to face up to the fact we can't take care of our loved ones alone or even with help. There comes a time when they need to be somewhere there is help around the clock. Have you looked at Nursing Homes near you? If you haven't please please do.

    I have cried all over Christmas. So cry all you want to. It is healing. I still cry and don't think I will ever stop. We have been married for 50 years so I understand how painful all of this is for you. Sadly we try to cling on to our loved ones when deep down we know they are leaving us. It is the cruellest thing and having your loved one die before you is also cruel. That happens to all of us however? There always has to be one who goes first?

    You need help Audrey. Please admit you are not Superwoman! You have done amazingly well but time to let someone else shoulder the burden that is PSP. You need time to cry and time to sleep. Maybe then, although you will feel guilty you, can talk to your husband and show him the love you so obviously feel for him. That is important for both of you.

    Wish I could give you a big hug. You are feeling the same way I did this past week. You will feel you have let him down. I know I feel that way all the time and I am not the only one feeling that way either. It is heartbreaking but sadly you both really need help now.

    I would suggest the newspapers if I thought that might help you. Not sure how you would feel about that however, and it's only putting off the inevitable.

    Please let us know what happens? Please don't try to lift your will kill you and then he will truly be alone?

    God Bless you both. You are in my prayers and my thoughts.


    Marie x

  • I know that feeling only too well Audrey but I'm afraid this is a battle which is ultimately impossible to win. Just be careful that you don't both go under. I do hope you can get the help you need.

    Love and very best new year wishes


  • vih4444, He is back in the hospital so that hopefully they can figure out what is causing his getting worse. Maybe he just has an infection and he will get better than he is now.


  • Good Audrey. Hope you can relax a bit knowing that someone else is taking the responsibility for now.


  • vih4444, TY

  • Vicki, TY. I put him in the hospital since since I can't get any help until Tuesday.


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