Just wondering if anyone else has experienced this - my mum was diagnosed with PSP a good few years ago and has just moved to a minced and mashed diet and 2 scoops of thickener into liquids. I’ve been told she can’t have ice cream because it’s a choking risk but the other day she was given spam fritter (cut up) followed by cheesecake???? Isn’t that more of a choking risk or am I missing something?
Also every time I go in to visit my mum spends the whole visit crying and wailing - yet before she sees me is sat watching tv happily. I go in 2-3 times a week for 2 hours and my sister does opposite days - I find it emotionally draining especially after a 10 hour shift at work when I want to spend quality time with her. She refuses to use the communication book when I ask why she’s crying and I often leave feeling guilty as she’s usually still crying - I feel I upset her if I go but if I don’t go feel guilty
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The diet thing is odd. My dad is in a resthome, and my attitude is that he should have whatever he wants......I mean hes not coming home or getting better, and its too late to worry about preventing every little thing. I would still go and visit, but understand its the disease that drives her behaviour rather than anything you are doing. Sometimes my Dad asks me to stay with him and not leave him alone in the home. It is horrible, but feeling guilty wont change anything now. Just be there and let her be unpleasant as it may be.
I think at this point everything is a choking risk and all we can do is minimise this risk, whilst keeping a balance of pleasure. There’s something to do with foods that change consistency- maybe that’s why ice cream was mentioned? Does your mum have a SALT involved who could clarify things?
I’m sorry to hear your mum is very emotional, that’s hard to deal with. I do think it’s part of PSP, mum has had days when she has been very emotional. Is your mum on anti depressants? Mum takes Sertraline and it definitely takes the edge off things.
I wonder how many psp patients are initially diagnosed with major depressive disorder first. My friend was so apathetic and catatonic that the first sign of the disease was admission to ICU due to lack of eating and catatonia, and freezing gait, and untreated UTI. He then had several years, despite a hand tremor where he was treated as a psychiatric patient including several long stays in hospital for severe depression. Finally I was able to get a neurologist in the hospital to examine him and do some testing after he had 12 courses of electroshock therapy and they diagnosed a dopamine transporter disease. It has been a saga for him!
Hi there, my mum lives with me so my dad can care for her a little easier. Recently we’ve experienced lots of tears and wailing. It’s exhausting and extremely frustrating and stressful. We too have been told it’s part of the condition which doesn’t help you or those living with CBD/PSP at all. It’s just so cruel and hard on everyone. All I can say is try and protect yourself so you can support your loved one however that looks for you.
your experience of the nursing home with food is like mine. Basically they haven’t a clue in mum’s home and keep giving her things that she can’t eat and then insist that she can’t have things she wants to have a feels she can easily eat. They then insist that they know all about managing diets and their chefs are trained. I’ve moaned about that saga with SALT and seating position elsewhere.
Yes I’m having a similar battle SALT have sed she needs to be bolt upright at meal times but I go in and they are feeding her reclined! It’s a constant battle especially when they think they know best 🤷🏽♀️
If they are feeding her reclined (as long as it’s not lying down flat) and your mum is more comfortable that way then I’d stick with that! I’ve had to fight for that
My daughter is speech pathologist working with the elderly. She explained the ice-cream given to my husband with PSP choked him as it became liquid as soon as its consumed. There is a thickened ice removal they can have that doesn't break down. It was available in Australia and New Zealand. Supplied free on prescription in Australia.
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