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PSP Association
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Hi

Life's been hectic thought I needed to send a hello not been on the site for a while. Mums getting worse.... I didn't think it was possible. She's having choking episodes on food which is puréed she knows the risk of aspiration/choking but she chooses to continue to eat and refuses to be fed using her peg (don't blame her). She's become incontinent of her bowels, we now have to use a hoist for transfers. Really struggling to understand what she is trying to say, cannot do the thumbs up/thumbs down because she also has bad arthritis and her fingers and thumbs are retracted. She is in constant pain in her legs. Dads really not coping I'm at a total loss he will not hear of a nursing home or increase in care. I HATE PSP 😪

Sorry for moaning

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Moan away! That's what we are here for. None of us can personally help, but you have one huge shoulder to cry on.

I guess your best bet is to contact the GP, see if they can help with Mum's pain and persuade your Dad to get extra help in. He can't afford to get sick, because that will guarantee your Mum goes into a nursing home.

Sending big hug and much love

Lots of love

Anne

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Thankyou Anne xx it's so difficult mum refusing GP when her speech was better she spoke to the GP about her future and she does not want any treatment for anything I've asked her if I can get the GP out and she clearly said no. I always respect her wishes but I didn't realise how hard it would be. Thankyou for the much needed hug xxxx

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Yes, I feel that! Hard when you don't understand, and then so very hard when you do, sometimes. No hospice services to help your father and you? Wish I could do more than send hugs, but I do that. And please share what you care to. I could not have survived without the care and support I was given here. Love and hugs, ec

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Yes pain management I failed to add that like Heady did. Morphine was a godsend for Bruce which acted as a dialator to the lungs ...... he was never in pain but he could breath a little easier.

AVB

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Spot on Anne! Agree Richmonds Dad must agree to some help, before the decision is taken away from him! If the main Carer goes down, that's it, game over! Nursing home will then be the only option! I hate reading these posts where the main Carer won't accept extra help because I know exactly what can happen and it breaks my heart! X

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Feeling so sad for all of you, PSP is a hurtful illness, takes away so much , gives nothing but heartache. Sending you a big hug. Yvonne xx x

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This is what we are hear for r1...It sounds like dad needs a day out to just refresh for a bit....He has been the provider for his family all his married life to your mum...what a hard thing to give up...But I know how your dad feels. I would not hear of a nursing home either. However it was only until the last few months that we were blessed with someone....and they only came 3 times a week.....

I say let your dad have his way...do not fret over his decision or your motheres. They have each other they are doing things their own way like they have done way before you had to step in...give yourself a break and step back in the decision making....if thats too hard on your own, It's ok for YOU to get some extra help ... a support group or even a person to come into your house and do some cleaning while you hang out with you parents and allow them to live and die as they want. These aren't very soothing words to read, but I promise you that if you stop worrying , you will be able to enjoy your experiences with your parents

Good luck to you r1,

Do Well

AVB

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Well hello Richmond!! Welcome back!! How are you? I'm really sorry to hear about your mum! I wish to god (as I expect you do) that your dad would consider extra help!! Can you get your local hospice involved? Re pain, my Dad has fentanyl patches (not sure I've spelt it right) change them every 3 days, massive help!! Hugs x

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Thankyou all got your replies as usual with this forum I feel completely supported xxxx just from reading your replies I don't feel so alone

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Hello, Richmond, Chris is a bit behind your mum. He refuses peg but so far not too much choking on pureed food. He is bed bound and incontinent.

I resisted anyone coming in but now have carers three times a day. They deal with all the changing the bed issues and I wouldn't be without them now. What care does your dad get ?

Big hug from a fellow sufferer. Jean xx

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Hi jean, he has 3 calls a day and I go most days, he looks exhausted but just shuts down and gets quite cross when I try talking to him xx

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I can only say that now I am doing less I feel more exhausted and demotivated. It all hits you and its so depressing. I feel so close to tears all the time. It must be so hard for your dad. He just needs to know he is not alone.

love, Jean xx

Big hug for you !!!

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My dear, I feel for you. It's just one thing after another. Wishing you continued strength and much love. Althea 💛🙏

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Hi Richmond1, sorry to hear how things are with you and your parents. There's no need for apology on this forum, we all moan from time to time and thankfully get a tremendous warm response from our friends here and good advice. Does your dad have a social worker or PSP Specialist Advisor who could have a word with him about extra care? Also you need to take care of yourself too. I hope things improve in some way. Sending you a big hug. Nanny857 xx

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No need to be sorry - if not here where can you express your pain. I feel for you and wish as others do that I could do more than send you a life affirming hug. X

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Accepting you need help was the hardest thing for us. My Dad and I were adamant that we would do everything ourselves, we didn't want an outsider. However as PSP progresses, it forces you into a corner. My mum now has help and that has taken the stress off my elderly father. He is now back to being a husband and making sure that everything is done properly as we would do it. We tell Dad that it's the most important job, as mum is in very late stages and cannot communicate anymore. Try and explain to your Dad that he can still be the man of the house and get help, his role is just as important, even more so when you have strangers looking after loved ones. I wish you all the best, I unfortunately know exactly how you feel.

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Thankyou so much x

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