PSP Association

Losing a loved one

This is the first time I have contributed,but I have been reading all contributions since my husband died in July.I only wish this site had been available when we first had the diagnosis in January 2007,PSP is an evil disease ,which,bit by bit,takes away everything a person enjoys and it leaves carers feeling very isolated.

I am not a saint and sometimes lost my temper when his unpredictable behaviour led to even more falls.He was only trying to help me,it was so frustrating for someone who had been so active.I was almost on first name terms with the wonderful paramedics who came to pick him up.I miss him terribly but I know he had had enough.I now have a good night's sleep and I ca go out and engage with the world,but I still feel how much I have lost from my life.

Excuse me for being weepy.

8 Replies

hello Barbara

i have PSP and am sitll quite active but it is so frustraitng for the carer/ patient both

It is not easy to deal with it but at least your husband is free fo it

u r right iit is a good site (like the Psp forum) for getting to know that you are not alone and that oshers have the sama problems and can really help with their suggestions

so plz do keep on the sitre- we do need you

liove jill


Dear Barbara,

Welcome to the site! So sorry to hear of the loss of your husband earlier this year. I do hope you have friends and family around you at this time. I hope you will continue to visit the site when you can as I know there are several bereaved carers who contribute regularly and who know what you are going through and I'm sure you have loads of helpful advice for those of us still caring for someone.

Thanks for sharing with us

Lots of love

Kathy x


Dear Barbara,

I really do feel for you and completely understand your feelings of relief at being able to rest and relax again yet it not making up for what you have lost. Please keep checking back as this site is a wonderful resource.




HI,Barbara, I really do know how your feeling ,My husband passed away only weeks ago, and I`m already feeling that I can get my life back together, it feels strange to be able to go out with no time restraint, I can accept an invitation to go out in thee evening, or I can simply stay in bed for an extra half hour, these are little things that as cares we not been able to do. Take it slowly and enjoy every moment, you`ve done all you could do, its your time now, good luck, I will be thinking of you, lv Elli x


Dear Barbara,

Sorry for your loss - our thoughts are with you. My Dad has PSP, diagnosed in 2009, but affected much earlier than that, and not a day goes by when I don't struggle to come to terms with just how this has affected all our lives, and how Dad has been reduced to such a different person, physically. He was the most jolly, whistly person, just full of is the most atrocious of diseases isn't it. I'm glad too that I've found this site,as it is helping me channel some of my bitter feelings about Dad's illness! Hope you can find comfort knowing people are going through the same feelings.

Love and thoughts,

Fran & family


Hi sorry you've lost your husband ....PSP is a b*****d of a disease. My husband Frank was diagnosed April 2007 so I don't know how much longer I'll have him for. It's a horrible thought but I know only too well that that day will come in the near future. Take care & I'm sure you will be able to smile again soon. Love Hazel B xx


Hi Barbara

I am so sorry for your loss. I know how you are feeling having lost dad in June. I have to admit there have been times where I have had to fill those times I would have spent with dad wth something else to do as thinking about him and the condition was getting a bit too much to bear. However, although I still think about him every day you do start to get back into normal routines and you can start to relax.

Take care of yourself

Love Lesley x


Hello Barbara

I lost my husband of 35yrs back in April of this year. I can relate to everything you say in your posting but if I let myself think too much on the past I could be riddled with sadness and guilt. I won't let myself go there. I know I did the very best for Richard and I know he was aware of the difficulties at times, his illness brought.

Now I know he is at peace and because of that, I am able to move on with my life. Yes, there are days when I think of him and maybe a piece of music or something on television can reduce me to tears, but mostly I feel very positive.

I went on holiday in September to visit my family in Greece and recently I went to the theatre in London; the first time in years! So many things I can do now without worrying "Is my husband ok?" "Is my mobile suddenly going to ring? "Will the new carer be able to cope?".

I must be positive. Richard would have wanted me to LIVE for him.

Everyone copes with their loss differently and I hope things will begin to get a little easier for you soon.


Maggie x


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