PSP Association
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What do I do? Part two!

Hi, soooo many replies!  Thanks guys.  I know we keep saying it, but what on earth would we do without this site!!!!

The love and understanding that has come across the ether is incredible. I suppose it's that word, understanding!  I have heard and am trying to find ways that you have all suggested, to get through this hiccup!  NannaB I hear you, I know I have to find a way to make things better, I think that's part of the problem, I am trying too hard, not taking into account what S actually wants. George, I will look into getting another car. Unfortunately, mine is on lease that doesn't run out until December, but I will look into how I can get out of that.  The hospice have told me, that they are going to use an adapted vehicle next week, as the volunteer was unhappy this morning.  Another kick that I didn't need!!!

Sorry I can't remember everyone points. I have just had respite, two whole weeks off, to do our building work.  Another cause of my misery, I am really pleased with the out come, I did get a round of applause from S the other day, but yesterday I was trying to buy some little bits for it and S couldn't care less. I know, I know, he probably wouldn't have before!!!!  I just wanted to share the enjoyment of a good job, but he wasn't at home!

I know what my problem really is, the enormity of PSP is kicking me again.  You keep thinking, you know what is coming, prepared for the worst and hey ho, you realise it is only just beginning, there is still heaps more "fun" to endure!  How do we all get up in the morning?????  Because the district nurse is knocking the door, I know!!!

I think it was Eastern Cedar that talked about her stars.  I read mine today, it said Capricorns are known for their ability to cope and that I would have to cope for a while yet, but I would get my reward!  So perhaps there is a light at the end of tunnel!!!

Thank you all so much for your concern and love.  Somehow, we will all get through this horrible journey, that none of us want to end!

Lots of love


9 Replies

Bless you Heady

We HAVE to get through this awful time

We don't have a choice!

Big hugs x




A big hug from me, I'm totally fogged out right now but I'm in there with you, Hubby comes home from respite tomorrow, hoping  I can  cope xxxx

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Sleep well tonight Heady, it's a new day tomorrow.

Sending you a goodnight hug.


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I wonder if that is the problem. Respite gives a taste of normality and increases the dilemma of how to manage an intolerable situation without hope and to also hang on to a sense of personal identity.  Reminded of the loss of our partner whilst they are still there. Wanting to move on whilst not wanting to let go.

I know - I am having "respite " and telling everyone I am switching off and I am on here thinking !!

Thank god for a site where everyone  understands what I am talking about.

I'm not sure what the reward is, except knowing we kept going !!

love, Jean x

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I always wonder, as I am walking around in a stupor, what next. Can't get a lift for our car since I wouldn't be able to open the hatch back, stuck on that. I can't even push a regular wheelchair much less lift it. Have the small one, but I am small weigh 103 lbs and can't lift that one either. Day by day Heady, that's about all of us can do.


Audrey (aka Auddonz)


Heady, Well I am a Capricorn also. Thank you for sharing the info on it because I do not get to read it anymore. It was so very hard for me when my husband first got sick. I was mad at the world. It was not until the past year that I have come to terms with it all. I have also quit trying to teach. It was too hard to take care of him and work. I now work in the yard. The fountain on my page here is in my front yard. I sit there in the swing and drink my coffee each morning. It is my sanity time before the day starts unfolding. I pray you find peace with it all. 

My husband did lose 75 pounds when he first got PSP because of the eating problems. He would spend 2 hours trying to eat. He is now on a total puree diet. He drinks it from a straw. He has become so weak he can hardly stand to be transported. God Bless you for your ability to hang in there. It is a long road that will reshape your world. Xoxo


Keepi on keeping on Heady, so hard isn't it but somehow we manage to pull out all the stops and carry on doing this important job of caring for someone who is very ill. Florence Nightingale would have a job to do what you are doing!!! Enjoy the sunshine if you can, take deep breaths and count to ten if you are feeling particularly stressed and look forward to your next respite.

Love Kate xx


Hi Heady, hadn't been on this site for a while and only catching up yesterday and today.  So sorry you have been having such a rough time, I do hope the stars are right and you get that reward.  Much love, Nanny857 xx


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