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PSP Association
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Still struggling on

Hello I am still here waiting for my miracle. I have come home from care and have four carers a day to look after me. Just as I find one that suits,she leaves and so we start again Me explaining I don't have to be shouted at I am not deaf I don't speak any louder. Have almost lost the use of my legs and I have a catheter which helps,unfortunately the constipation does not help.lactulose makes me choke. So I can do little for myself just watch the TV and watch the world go by. I would like to be in my garden or going out to the park I have just applied for CHC to go into a nursing home which is safer than being here on my own "not what I had in mind when I retired. My brain is active my body useless,my inspiration my brother who has had Parkinson's for 15years and with medication is still living a normal life.

12 Replies

What a lovely photo with beaming smiles from everyone.

I know what you mean about carers shouting at you. I have a close friend/ex collegue who always shouts at my husband, it doesn't matter how many times I tell her he isn't deaf. One of my responsibilities at work was helping youngsters with English as an additional to integrate into the school. I shared an office with my friend so always introduced new pupils to her and she would greet them very loudly and enthusiastically. Many couldn't speak a word of English and visibly stepped backwards away from her. If she realised they didn't understand, she just got louder and louder. Unfortunately, many people think if you have a disability or don't speak English, there must be something wrong with your hearing.

My husband used to take Lactulose mixed with yoghurt and he didn't choke then. He now has it put straight into his PEG.

I hope the CHC is soon approved and you find a place to go where your needs can be met and where you can feel peaceful and settled.

Please keep us posted.



Greetings what a lovely photo. Are you the grandma? I do understand about the shouting....either people shout at B or more commonly ignore him and ask me the question , like how is Bruce today?" I tell them I don't know why don't you ask him?

Like you my husbands brain is still pretty aware, it's more his body that's giving up.

But we can't give up, can we? Whether we are the carer or the patient of PSP we need to take one day at a time and strive to see the good in each of those days...and when they're lousy feel free and lay it on us at this site!

You have a good day.....and think about swallow therapy. You might get a speech therapist to help you find ways to swallow or textures that are easier to swallow....most of us mash up dinner for our mates and if that doesn't work, most of us use the PEG tube that goes directly into the stomach using a liquid based nutrient.

This PEG has literally saved my husbands life.



I'm Nan to the two girls auntie great to the boy.thegirls were round this afternoon and thank goodness for iplayer and Sarah and duck.


sounds like quite the entertainment!.... not sure what sarah and duck are but as long as they know , eh?


agree !

l jill



Or how lucky you are to have grandchildren . My husband would love to be able to have even knew just to pop in or he could hear their voices .

I think they help to talk your minds away from other everyday worries and woes .

We have to put up with GRandcats. Lol not quite the same is it.

Are us using thickeners in your drinks or sauces


CC, you are right my husband loves when his old carer stops by for a visit with his 2 year old!


So far John has had 147 different carers . No . More now eveN , we have recently changed care companies so have new ones .

Some of the carers would come through the door mobiles in hand clicking away . Shouting out did you sleep well last night . Or later in the day .

How are you John , have you had a nice day , what have you been doing , o me are touting to do anything nice today . GRRRRR?

Nice girls but o dear drive me mad .

I told the one lovely girl . Please don't keep asking that . He has had an awful day and my day was the same . Will be tomorrow as well .

They are told to be pleasant and interact but they don't give themselves to weigh things up when they first arrive . Am I being an old grump .? Sounds so ungrateful .

I am never miserable I find it more help to think positive even when it's not


What a gorgeous picture! Lovely matching smiles!

The shouting must be maddening for you! One of the two aides we have is herself a little deaf, and her voice could peel paint. And she talks nonstop. Some days I feel so guilty leaving my sweetheart in her care, as I dash off while she follows me to the door shouting pleasantries at me! She means well and she keeps him safe, but I know he often pretends to be asleep just to make her stop yammering at him! I have spoken to her a few times about it, but she says that's how she is, can't help it.

When I see cabbage cottage with 147 carers, I know I should be grateful I have just had two.

do you get to see much of the grandchildren? And may I ask what you did before you retired?

Here's hoping for the miracle we are all waiting for. Love, ec


You are the inspiration! Blessings to you and your lovely family. We are sending our good wishes and support on your journey.


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Hello myjual7

You sound wonderful despite your struggles.

It must be awful to have to consider a nursing home so early in your retirement. Remember that you are not stuck in the first home you go to. Kick up a fuss if it's not good enough, because you are worth more.

Do write on the forum again.

I would so like to hear your progress.




After all these years, I'm thinking of you and wondering how you are. Maybe you can't reply. Maybe you will never see this, but I'm sending you loving thoughts all the same.


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