Hospice kept on driving me crazy about him going there and found one rehab center that will take him tomorrow. Actually decent one. He drove me crazy and the hospital crazy by refusing to open his eyes or responding to anyone. Finally late afternoon when pt came he decided to wake up, says he was sleeping and he actually stood up with them. Huge step. UTI cleared, eating food that is mush but very hungry. I asked him if he wanted to go to hospice and he said no, I want to live.

29 Replies

  • don isn't refusing to open his eyes , he isn't able to at that particular time .

    it's very frustrating for you but think how frustrating and upsetting it must be for him . try asking him a different way , instead of open your eyes . SAY look up , or isn't that spider big over there can u see it .

    worth a try . When I want John to lift his head back then I will ask him to look up and his head goes back the same , time . it doesn't happen every time of course . but goes some way to help .

    it is so unpredictable isn't it . it's one of the hardest things for me to cope with actually .

  • once again. If lift your head up or open your eyes doesn't work I will change it to raise your chin .

  • going to try and give John some breakfast now . that's if he is still responsive . I am not holding my breath though .

  • Cabbagecottage, another new thing you just taught me. He has swallowing issues as well so they want me to work with the speech therapist this week to learn how he now has to eat. Hope John responds HUGS AUDREY

  • Audrey I think you need to explain to him that the hospice is not just for people dying it is also for going to get well to come home, I think Don is thinking in he goes into the hospice he is going to die, I think you need to explain to him that is not the case, he will be able to come home and be with you. Chin up all will be ok, it was the urine infection that made him so bad, he is eating and he could stand up, try and make him see he will come home when he is strong enough. Love to you Yvonne xxxxxxxx.

  • Yvonne, he is in another rehab facility and progressing, slowly but progressing. He did not want to go to hospice because they would not give him any rehab. Some SOB dr in the hospital the day he was released told him he would die in 3 or 4 months. Back on reg food, just getting out out of bed alone and fell, fortunately no damage. Trying to convince him to ask for help but I don't think I am getting through to him and they can't restrain him. Love back, things are definitely looking up. Audrey who is crawling into bed


  • He understands that but the lack of therapy in hospice bothers him. Yup the UTI really did a job on him but he is responding nicely and getting stronger. Upset that they are saying in the new rehab that he will have to stay the month maybe.

  • Tell me more about the UTI. My husband has one. The doctor said it is the highest bacteria amount that can be read (from what I understand). It read 4+. We go to the urologist tomorrow morning. He has been on been on antibiotics for 3 days.

  • The UTI plays havoc with anyone who has PSP. He went to the hospital since any home care was out of the question. IV antibiotics, which fortunately is doing the job, will be on them for 2 weeks. But the UTI froze him completely at home. Spoke to the Dr who diagnosed him with PSP said that was the right thing to do. Rehab screwed up, he was home for approximately 22 hours if that. Its seems this type of infection effects seniors very badly and actually sets them back back. Now in another rehab, considering contacting a lawyer. He is doing nicely and progressing slowly but progressing.

  • These urine infections set them back a lot. My husband has had a couple, which was really hard work, make sure the are drinking loads. Audrey you sound much better look after yourself, and remember one day at a time, and make sure you eat and keep yourself well, for when Don comes home, big hug Yvonne xxxxxxx

  • Hey Yvonne, He is on a puree diet. They are still concerned about his swallowing and the therapists are concentrating on that and his balance. Ironically one of the therapists has a relative who also has it ad is educating whoever works with him. Makes me feel so much better. I just wish I could wrap my head around this thing that happened so quickly. I am trying to rest more and am eating more. Your help makes a big difference in my thoughts and life. TY so much. Gong to bed now. Big hug back Audrey xxxxoo

  • Hi Audrey glad the doctor understands this horrible illness, it makes things better for you, that is the thing about PSP you don't know what it is going to do. Happy that you are looking after yourself sweet dreams Yvonne xxxxxx big hug back to you xxxxx

  • H Yvonne, Actually its the OT who is educating everyone there. I am thrilled she is there. He was stronger today, got out of the bathroom by himself which he is not supposed to do. Told me to go home and rest. Think he wants to see what else he can do without help. Stubborn like a mule. Unfortunately my back is still killing me which is effecting my walking. Need that like a hole in my head. :(. TY for caring so much and understanding. BIG HUGS back xoxoxo

  • Hi Audrey so happy things are going well, and there so someone there that knows about PSP make your life so much easier, than having to explain it to everyone. Listen to Don go home and rest your back, and get yourself ready for when Don comes home, big hug back to you Yvonne. Xxxxxx.

  • Haven't seen him today, but he likes the new rehab so much and there is a big improvement over the last facility and since the UTI.

  • Hi Audrey that's good you seem much happier glad all is going well, look after yourself Yvonne xxxxxx

  • Yvonne, I couldn't sleep last night and considering going to bed shortly but am afraid I will be up 4 in the morning. Then of course won't be able to fall back to sleep. I thought last nite I was getting a heart attack so after lying in bed for 2 hours got up and took another valium. BTW, does loss of memory go along with this. Don couldn't remember our telephone number but remembered our daughters to get ours. I am going nuts. Audrey xoxoxo

  • Audrey you were more than likely thinking too much, while Don is being looked after why don't you see the doctor and get something to help you sleep? Give Don a pad with phone numbers on it, might be an idea. Take one day at a time, that is the best way, with this horrible illness, and look after yourself, because you are important to you need to be fit and well to look after Don when he comes home, and while he is getting care you organise help when he come home, so you don't ware yourself out big hug stay positive Yvonne xxxxxxxx

  • Yup, you are so right, do my best thinking when I am trying to go to sleep. He really doesn't want to talk to anyone but me. I felt rotten today and had to wait for the vet to straighten out our dog issues. but I know he was worried that I didn't go to rehab. Kept on calling me to make sure I was ok and asking when he could come home. I told him to listen to everyone, they are teaching him all kinds of things to try and keep him safe. I wish I wasn't so darn tired, feel like a wet rag. To boot my daughter informed that tomorrow is early release from school, so will have to take our grandson with me. He doesn't do to well in stress situations so it should be interesting, not. TY so much for your kinds advice, it helps me so much. I am positive he will come home doing better with what they are teaching him.HUGS xoxoxo

  • Audrey he sounds like he is getting better, have you not got a friend who could look after your grandson so you could go and see Don by yourself ? Never mind now that you have sorted out the dog, you will have more time for Don, ask friends to help you out, you out, I bet they would be more than willing to help. Take care of yourself big hug yvonnexxxxxxxxx

  • Grandson autisic, my daughter will not trust him with anyone but us. Friends don't live near us so that is an issue. Went to see Don with our grandson and he was very good, so things worked out. I just wish I felt better myself. I am so out of it I can't think straight. Think I am going to lay down now. BIG HUG BACK XOXO

  • I know how you feel Audrey, it is so much to take in, this PSP is a horrible illness, maybe you need to speak to someone, it is easy to talk to someone you don't know. My thoughts are with you Audrey , just take one day at a time, and get some rest when ever you can. Big hug back to you Yvonne xxxxxxx

  • Yvonne, I know you mean a psychologist but in the state I am in I would be there 8 hours a day. Its the fright, the fight with everyone to get info. I have stopped looking things up, at this point it is one day at a time. Going to the Dtr wth Don tomorrow who is the only one in Ocala who who knows anything about this. What she will say who knows. They are being very aggressive with him at the rehab. Think I mentioned that one of ot has a relative with the same thing so she is educating everyone who works with him about it. Makes things a little easier. Have a headache from hell, won't even take my blood pressure. Going to feed my doggies and myself. Maybe it will go away. TY again for being my friend and helping me so much. BIG HUGS xoxox

  • Hi Audrey we can only take one day at a time, what dogs have you got? We have a french bull dog called Baxter we love him, he has been with us for 8 months, first dog, he is so lovely, he sits by George's feet when I pop out to the shops. You need to look after yourself, so you will be fit when Don comes home. Glad she is educating everyone on PSP , look after yourself sorry for the delay in getting back to you, trying to sort out my garden, we moved into our house about15 months ago, and with George not well, we are not able to go on holiday, so I thought we need to have a nice garden for the summer, because hopefully the weather will be nice and we can spend time in the garden, little summer house delivered today, so looking forward to seeing it assembled next week. Look after yourself and Don big hug Yvonne xxxxxxxx

  • Have 3 poodles, 2 standards and a toy but the toy weighs 11 pounds, little chubby. I forgot where are you? Your lucky you can garden, my back and knees kill me. I am 76 and age is catching up with me. Wish I could plant some things but know I won't be able to get up. Don is progressing thankfully, his swallowing has been changed from mush to little pieces. He loves his therapy, working on his balance, as well as walking. I can see he is getting stronger. But so tired since his room mate coughs all nite long. He bitched that Don was yelling during the nite, I talk to him at home out, helps my sanity some. He told me he dreamed that I was taking all of the covers and I didn't answer him. Probably said it out loud. Going to sit down and put on TV for a little and then bed. I wish I wasn't so darn exhausted all of the time from doing nothing nothing but worrying. I am trying so hard to stop crying at the drop of a hat. Nite for now and big HUG Audrey xoxoxo

  • Hello Audrey we live in Hertfordshire London, we have a bungalow, with a nice size garden, have plants waiting to go in but the weather has not been good. Glad Don is getting there, and he sounds like he is. Just need to look after yourself, sit down and put your feet up, and make sure to eat and look after yourself, you need to be strong when Don comes home you don't want to be ill when he comes home, it is your chance now to rest, and don't worry everythink will be ok love to you have a good quite week end Yvonne xxxxxxx big hug xxxxxxx

  • Hi Yvonne, He actually got out of bed today and dressed himself, the first time and so happy that he was able to do it. The tech complained to me that he still should not be getting out of bed without assistance but guess he gets tired of waiting for her. He is so much stronger. I try to rest but am exhausted from worry, I know that. Woke up during the nite looking for him and then cried of course. Feel so much better when I see my stubborn old mule. We live in a small house built in 1918. Not old to your standards but for the US it is. I so wish I could plant. Our front yard needs help badly. Planted some things last spring but most of them didn't make it unfortunately. Love the firecracker plant some idiot we hired mowed it down, grrr. The back is for the 3 dogs, which they enjoy. Time for bed, take care talk to you tomorrow, HUGS AUDREY XOXOXO

  • Hi Audrey he sounds like he is getting there, I bet he will be home soon, George can't. Get dressed by himself, but Don sounds like a strong willed man, doing things for himself, you will have him home soon, and you will feel better, but tired but a good tired, for a good reason. Gardening is hard work, I cut the grass yesterday, took me ages, but it looks nice, we have visitors today coming to see George, and they are staying for dinner, so a busy afternoon for me. Look after yourself Audrey and stay positive big hug back to you Yvonne xxxxxxxxxxxx

  • Won't until the 28th from what they tell me. He keeps on asking me when will let me go, I am afraid to tell him. Did I tell you he got out of bed yesterday and walked to the dresser to get his clothes. Then dressed himself. They are so upset with him since he s not supposed to get out of bed without help. My guy is stubborn, don't know how to convince him to stay and not get out without help. He is so much stronger which makes me so happy. Have a great day with your company. Talk to you later BIG HUGS AUDREY XOXOX

You may also like...