PSP Association


My mum Rosemary is really deteriorating, I have been going to her after work most days, she was very upset at the start of the week as she had an 'accident' in bed & soiled the sheets, thats never happened before, I felt so sad for her and didnt mind sorting things out, but wondered if it is the way of things to come. Seems to have been ok since.

But good news on 2 counts, she will be going into the National Hospitlal for neurology within 2 weeks (stil awaiting admission date), for 'tests'...what will they decide she has I wonder?

And secondly, we will move into our flat in mid December, so I can care better for mum. I hope that I can look after her for as long as possible, if that means putting my job on hold too, so be it. Mum got upset with tonight saying 'you're not doing anything' - I tried to remind her that I have cleared her house, sold the house, found us a new place to live, am caring for her, working at a hospital, not sleeping much, have an underactive thyroid myself, and so her saying that I am 'not doing anything' wasnt fair! But I know her anxiety levels are off the scale with the anticpated hospital stay and moving home, I shouldn't have lost my temper with her.

I am just very tired today. And on 11/11/11 its the 2 year anniversary of my dads unexpected death, so its been a tiring 2 years, as mum went downhill after he died, Hey ho. The blogs here are really helpful, and I have already been in touch with some lovely people in similar situations, which really means so much. Thank you all for posting and communicating, sometimes we think it isnt of any use to another, that it is helping us, but I am sure we would be surprised at just useful anothers writings can be.

Smile on all.

Clara XX

12 Replies

my dad's accidents have led to him having to wear adult diapers. the progression is difficult and hard to describe. unfortunately psp is a very very challenging illness - and what appears to be very confusing for the patient and immediate caregiver.


Hi Clara

When I was looking after my husband the most difficult part, apart from the sheer physical exhaustion was how his character had changed. I don't know who felt worse when he had one of his "Little accidents", him or me. I didn't mind having to change the bedding every day but I felt so sad that such an active person should be reduced to this state. Wearing diapers etc. He had been a lovely person and so well liked for his altruism and sunny nature. However there were times during his illness when I felt very upset because he didn't see to realize how exhausting both physically and mentally it all was for me.

I believe now that it is all part of PSP. They withdraw so much into themselves and aren't fully aware of the efforts we are making for the. We too moved into a flat and this mad life much easier all round. I now know that he did fully appreciate my efforts, it's just that they are coping with so much with this dreadful disease.

Kind wishes



Hi Clara

The apathy and lack of understanding how much you have to do for them,both to keep them safe and keep them going,is part of the illness.It has taken 4 years for my husband to be diagnosed and they were just awful.You dont know why they have changed so much.

I am sure deep down somewhere, they do know,even if they cant show you .Hang in there,it is a lonely and very hard road but we are all on the same path.


Dear Clara,

Sorry to hear about your Mum. It sounds as if you have a lot on your plate at the moment. I hope the time at the National is helpful. Loss of control of bowel and bladder seems to be a common problem to everyone with PSP at one stage or another.

Do contact your GP and see what support you can get. Does your Mum get attendance allowance? You can also get incontinence products and advice from Distric Nurses.

Take Care of yourself

Keep blogging!!

Love Kathy x


Hi Clara,

Sounds like a really tough time for you but you will get through it and things will gain some equilibrium for a time. I think that is the nature of PSP, certainly in our experience, my mother had periods of sharp decline where I started to panic and then things evened and we see little change in her for absolutely ages. Also, once you are settled in your flat and have some sort of routine going, it will be easier.

I can also really understand with what you say about your mum not fully appreciating all that you do.My mum is the same, almost like she has lost the ability to empathise - this is definitely the illness and not them as it is SO out of character for my mother who spent her life putting us all first.

Don't give yourself a hard time about losing your temper. Its normal and expected and we all do it. It is a very, very trying illness. Doesn't mean we son't love them with all our hearts.

Thinking of you in the mean time




"I can also really understand with what you say about your mum not fully appreciating all that you do.My mum is the same, almost like she has lost the ability to empathise - this is definitely the illness and not them"

Thanks for saying this, it's something I struggle with a lot. My Mum seems to be retreating further and further into herself, and no matter how much I do for her, a lot of the time it seems to mean nothing to her. She doesn't seem to care about my feelings at all a lot of the time.

Clara - thanks for your post, I hope it helped you to type it all out, it certainly helped me to read it. You're not alone.


Hi Clara

What you are describing with your mums mood swings and how she feels you do nothing for heris typical of PSP, Ray was just the same whatever i did or did not do was never right.

As for the 'accident' can I suggest you ask for a referral to the incontenience service, this can be obtained through your GP or Social Services or District Nurse Team.

Love Jenni


Hi Jennifer

We met at the last PSP meeting which was my first attendance. Found it so useful and so reassuring to know that my experiences of PSP are not unique. The foregoing comments about personality changes I also find reasuring - I think I have at last come to realise that while Jim still looks like Jim he is not the same person - and I shouldn't expect the same reactions . Or appreciation! Hard, ain't it?

Everyone seems to be in the same boat ...

Best wishes Margaret


Hi Clara, I can only reiterate what others are saying. Don't be too hard on yourself losing your temper, its awfully hard when you are trying so hard to look after them and they don't seem to appreciate whatyou are doing. I remember the times I had to leave the room biting my tongue :)

Hang in there and get help wherever and whenever you can

Take care of yourself Clara, we're always here to talk to

Lesley x


Don't forget to take care of YOURSELF! As caregivers we tend to focus solely on the care of those with this God awful disease and forget about looking after ourselves! If we get sick, how the heck to do look after our loved ones?? Try to find some respite with the caregiving activities and give yourself at least one 'guilt free' day off each week. Easy to talk about it but harder to accomplish.

Jeff beligerence and cruelty was unbearable. For a feisty but normally gentle and loving person, this change in personality chased away many of his friends and was the beginning of the end with one of his businesses. His decisions went from sharp and tactical to emotional and reckless. The whole time he was with me, he did nothing but complain and critize. Shirt wasn't ironed, meal wasn't fast enough, I was late getting to pick him up etc. I work full time and have a highly stressful position. I was leaving work sometimes twice a day to tend to his needs. The meaness has passed though.

The worse he has become, the more emotional he is. Now he is docile and kind. I think the character changes are the worst things to watch. You see them changing before your eyes!

Jeff's accidents were daily because he was too afraid to make an attempt to get to a toilet in case he would fall! Every day I would bring him home with soiled pants and have to tidy up. At first he vehemently refused to wear the adult diapers but in the end he complied. I think this was a very difficult change for him.

It is so hard to watch them change and it happens quickly. A year ago, Jeff could manage to get around on his own with a walker and keep a conversation going through a meal. Now, he is in a wheel chair and can barely string 2 sentences together before giving up because he is too frustrated to keep trying. It is so heart breaking. I focus on remembering all the fun and happy times we have shared.


Dear Salman,Lina, Pinda, CateT, Kathy, Idris, Jennifer-nind, MagsG, LesleyB, Jeff,

Thank u all so so much for your heartfelt comments & sharing of your experiences, what a wonderful support forum we have here. It really helps enourmously to hear from you all, thank u for taking to the time, I am glad we can all empathise.

All your comments so true, the change in personality of those we care for, the need to take care of ourselves too so that we can care properly for our loved one and the sadness we all go through...lets keep sharing and encouraging and helping one another to fight another day.

Much love,



Hi Clara,

i cared for my father for 3 years full time. It is very very exhausting . more mentally than physically. had to manage many things along with caring for him. gave up alot too. Infact I was expecting my first baby , when he was in his worst phase. sometimes his unreasonable attitude (which we all have to understand, is a part of the illness), used to get to me. but i used to calm myself by thinking, what i'm going thru is not a patch of what he was going thru. when he would shout at me for things, i would try not responding with anger, but humour or distracting him. But yes sometimes i would loose my cool. and feel terrible after that. Today i miss him like crazy. i wish he had lived on to see my baby. he went a month before. Today i think, how much we manage, give up, balance, for the happiness of our kids. He must have done the same when we were babies. and i dont feel bad for what i went thru. infact i wish i could have done even more.

Please stay strong. you are doing a great job. and parents are totally worth it.



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