PSP Association
5,160 members7,166 posts


Hi all, just wanted to say, did not realise how hard this is, trying to be patient, and not getting upset, feeling so lonely. George did not get up yesterday until 6.30 just in time for dinner, which he had a moan about, I had cooked a chicken on Saturday, loads left so I decided to have that for dinner, he moaned that is was the same dinner as Saturday, and then he complained about his dessert of fresh fruit and chocolate mouse, I felt like screaming. I mowed the lawn on Sunday did all the garden, washing and tidied the house, I was by myself all day, just feeling so lonely, never thought our lives would come to this, we worked so hard through our working life, no being able to enjoy it, on what we deserve.

Oh well enough of moaning lets get on with dinner, I hope I don't hear no moaning he has got salmon.

Let's hope Tuesday is a better day, we have to go Into London for a hospital appointment .

Love to you all Yvonne xxxxxxxxx

21 Replies

Yvonne, I understand where you are coming from. I feel so lonely, its like who is he and who will understand. Running out of patience quickly and am always upset.. My Dtr says stress is not good for you. I know that but how to distress is impossible. No one understands! I took a nap this morning out of utter exhaustion and he decided to walk down our deck stairs, about 6 steps and back up. I am lucky he did not break his neck or hip which petrifies me. Chicken is in my fridge but he forgot to eat it for lunch. Now it will have to be tossed. It would be nice wouldn't it, to enjoy our golden years. We worked very hard as well. Another thing that scares me is if I get sick he won't be able to take care of me. Yikes, a nursing home which is horrible.


audrey ( aka auddonz) xoxox


Audrey, George was at the centre today, I layed on the sofa and went to sleep, I have got a sore throat, and the dog is playing up, I think he realises that I am not feeling well, oh well back to cooking dinner. Big hug Audrey Yvonne xxxxxxx


Yvonne, what centre does he go to? I wish there was some place I could take Don to. Meeting other people would be so good for him and me as well. All he does is sleep and watch TV. I feel so isolated :( Sore throat that stinks, pardon my French and yes the dog does realize you are not feeling well. Better rest as much as you possibly can. Big hug back Yvonne - Audrey xoxox


Audrey, do you have a hospice anywhere near you?

Many hospices have fantastic support groups for people with conditions like PSP, where patients and their carers can go during the day to get a massage, maybe some gently physio or just to meet other people in the same circumstances.

When I was looking after my mother who had PSP I learned that hospices aren't just for people at the end of their PSP journey - they help people at any stage. I don't know where you live, but here is a link to my local hospice St Joseph's to show what they do,

Maybe you have a similar hospice near you?



That's what scares me too, the feeling that I'll never be able to feel ill again because there's no one to look after me now!

Love....Pat xx


Pat, I am 10 years older than you. Have a bad back, hips click, along with legs that hurt, prob from back. Other health issues and Don used to help me a lot. Now I feel so alone and when I try to take a nap he usually does things that can really hurt him. Going nuts sound familiar :)


Audrey (aka auddonz)


It certainly does Audrey, Keith used to help me so much and now I have to do absolutely everything, feel like a zombie most of the time wandering about on automatic pilot!

Sorry about your health problems, I wish there was something more positive to say but we all know there isn't !

Take as much care of yourself as you can and keep battling on, unfortunately we are all in this horrible situation together and we do try to help each other as much as we can, it helps to talk to people that truly understand!

Love and hugs....Pat xx


Thank goodness I found this site. It does help. I now am dizzy, prob pressure up. Am going to sit down and try to relax, hah,

Love and hugs back....Audrey (aka auddonz)


It is tough. It certainly does try ones patience! My husband will tell me he's hungry, then a few minutes later will ask me why I'm making dinner. It is frustrating. I make it anyway and fix him a plate and he usually eats it. He can change his mind, or not no what he wants from one minute to the next. It's just as frustrating for him as he doesn't ever know what he wants and can't make a decision to save his life. I'm lucky at this point that he can still help me around the house. He can sit on the tractor to cut the grass, so he will do that. Life does seem very unfair sometimes. This isn't the way we wanted to spend the second half of our life!

Everyday is a new adventure/challenge!!

I hope your appointment goes well tomorrow.



LynnO George can't do anything, so it is so difficult, life is unfair. Yes another appointment in London hospital, not sure what they are going to say, he was in hospital a couple of weeks ago, not sure if results will be back so quick. Yvonne xxxxxxx


Audrey he goes to a day care centre from 9.15 until 3.15 Monday and Friday he likes it very much Yvonne xxxxxxxx


I forgot Yvonne are you in the U.S ? Day care center for adults with disabilities?

Audrey xoxoxo


It's tough isn't it. I do hope tomorrow is better for you both.



Thank you NannaB xxxxxx


Its hard. Sorry you are feeling ill. It is just too much. I think the loneliness is the worst. Having to deal with everything. C. was tremendously supportive and we always shared decisions. Now he is self absorbed most of the time. Then he has a period of awareness and apologises to me.

Hope you feel better soon Jean x

1 like

About. Two years before John was diagnose he suddenly one day asked me if I would start making the decisions . not that he needed to I had always done so anyway lol .

it is very hard Tiring frustrating and painful , it's amazing how we all cope , I have had all sorts of praises bestowed on me . the most recent one in an e mail from our new social worker . INSPIRATIONAL "" It did make me smile , so all you INSPIRATIONAL people out there do carry on with what you are doing . john is bed chair or commode bound and hosted for everything . He is 81 I am 78 and have been very hands in since he was 70 .

he buzzed me this morning to ask the time . bleary eyed I read the clock and said it was 6.30 came downstairs , yes it was only 5.30 . I lost that precious hour . I am not really a morning person .


Audrey, I saw your question about somewhere for your hubs to go; it was my father who had psp , mum was his carer and for as long as he could he went to 'day respite' at the local hospice. At first it was twice a week, then once. They collected him and brought him home, and for several months he enjoyed it and it gave mum a few hours to do the zillion things that are so very hard to do whilst your loved one is there. After dad no longer went to the hospice, they were able to provide a sitter two or three times a month (sometimes in emergencies), which at least allowed mum an hour in bed, or the chance to rush round for some shopping. The hospice was fantastic. Mum was also able to arrange occasional sitters for (I think)Age Concern, or Age UK. We're not talking often, maybe once a week for three hours. But it did mean that very occasionally my sis and I could take her for a meal (locally, of course, as we sometimes had to cut short and run home), or shop somewhere other than the local tesco. Ask you Dr. , call the local hospice and all the other charities and agencies, ask your district nurses....There may well be help out there, but you need to make yourself known to them. Give the sitter all the written info you have about psp so they can begin to 'get it'. You need to find, and accept, all the help you possibly can, because if you're not there to look after him.....who will? It's over five years now since dad died, and I'm still so very grateful to all of the carers who were involved with him. Great pal doing a hard, hard job. And as for my mother......words fail me, she's amazing! Look after yourself. Hx


As you say, never imagined that life would turn out like this. Sometimes I wish I didn't know what was coming but on the other hand I know I need to have that info and this is the only place I feel people really understand what exactly is going on. Bet most of us feel the same.

Hope you are feeling a bit better now, terrible that you aren't allowed to be ill. What do people with PSP do who haven't got a partner to care for them, makes me shudder. Take care, kate xxx


Sorry Yvonne to hear the care is catching up, you sound as though you need some time out, agree with Helen250, ask your GP or District nurse about respite care, or day sitting services. Maybe worth checking out the Carers Trust or local support for carers lots of groups round London.

I had my first time out 4 days, 8 weeks ago and though guilty feeling certainly allowed me to catch up with sleep. M was anxious at first but was settled by the time I came to collect her.

According to a social worker as a full time single carer you should be entitled to upto 6- 8 weeks a year respite care if you are on NHS continuing healthcare please check it out, though could be Welsh NHS not English but we usually follow.

Good luck try and get a nap Tim


Hi Tim we have the nurse coming on Wednesday about CHC doctor at the hospital said we should be getting it, 2nd try!!!!


Audrey we live in hertfordshire, near stansted airport Yvonne xxxxx


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