My husband was diagnosed with PSP 3 years ago, but probably suffered longer.
He is now sleeping much more each day & doesn’t communicate with me very much, although he knows me & asks for me.
He is now on a soft diet, I feel it doesn’t give him any”food” satisfaction, he can chew & swallow chocolate & biscuits etc , the Salt team have recommended this diet, I’m sure it is impacting on his quality of life, I wonder if he feels he’s just like a baby, & that’s why he is so withdrawn
dear HowDoglover
I am so sorry to hear your concerns. You husband is probably comfortable enough, but it would be very distressing for you to see him withdrawing and realising that his pleasures are very limited. I don’t know the answer. Spend time with with him, talk to him and play his music, touch him and remind him of happy times. PSP is cruel. He knows you are there for him and that you care immensely. Treasure the moments when you connect. Make sure you can tell yourself you did what you could for him. “Hearts can do no more”. 💜
I’ll be thinking of you.
Hi It can be so terribly hard to experience and watch but do consider PSP bring a heavy dose of apathy and what may bother you may not actually be bothering your husband to the same degree. I've noticed too fatigue is increasing and I think thats what you are seeing rather than him giving up. Communication too, suffers both from the perspective of it becomes more difficult and slower to process information and word finding harder, often to the point where the point is forgotten and something else like the tv or a drink in front if them takes the attention instead. With regard to food it may be that soft foods are safest to prevent choking so what about a moist cake instead of biscuits, there are some rather lovely mousses, trifles, custards, mini sponge puddings and other desserts and many easy soft savoury food options from supermarkets...we spend a fortune on M&S mini meals all of which are soft or can be once cut up and mixed with the gravy. I can vouch for the chicken dinner 😋 easy when you have to eat in shifts. Take care
thankyou for your reply, My husband is in long term care, so the home are in charge of his meals, your comments about apathy are very helpful .
Hi HowDoglover!
I agree with the suggestions of Bergenser and Millidog.
As the disease progresses, the patient sleeps more. In advanced stages, more than 15 hours of sleep a day have been described, which, over time, increases.
Hug, luck and courage.
Luis
My husband is probably around the same stage. He sleeps a lot of the day. He perks up, and makes an effort to communicate when we have visitors or go out - but then that wears him out and he sleeps again as soon as people go or we get home again. Nevertheless I keep arranging visits from friends etc as he says he enjoys it a lot and asks me every day what is happening, where are we going or who are we seeing.
Ruth has made it very clear that she wants to continue eating normal food, even though she chokes at every meal and it is a danger. It is her one pleasure in life. So we overcook vegetables, avoid anything obviously dangerous (for her hard crusts on bread / peas / beans unless mashed), and take 1 to 2 hours of an evening feeding her very slowly, reheating the food every 20 mins. Luckily I have private carers to help me.
If it is any consolation, our SALT says it is unlikely she will die from choking (she will pass out first and the lump hopefully become dislodged). But she does get rattly and struggle to clear her throat and that could lead to aspirational pneumonia.
Richard 🙂
It is good to have that clarity about “risk feeding” - I also came across the concept of “comfort feeding” where the concept is that the meal time is focused on making eating enjoyable and comfortable for the loved one, rather than prioritising safety and/or nutrition. I am very glad you are able to accommodate Ruth’s wishes in this respect, I know it is emotionally hard to accept the corresponding risk. 🌻🫂
The good thing is that Ruth gets 800 calories a day through her PEG, so if a meal gets too difficult we do not need to worry that she is not getting enough nutrition....But really just want to keep her feeling she has quality in life, even if it involves a bit of risk.
Richard 🙂
Richard33Sorry to learn that your wife chokes at every meal. I am worried about that as I know that microaspiration always goes on whenever a person suffers from choking and/or coughing while swallowing. So, please ensure that you modify the texture of the meals you offer her. It is very difficult for me to watch a person choking or coughing while eating. Best wishes to you and your wife.
We are used to watching Ruth choke and have to lean her forward and tap her back often. But, touch wood, she always clears it and then wants to carry on. The aspiration is a worry.....just hoping our luck holds out and it does not develop into pneumonia🙄.
Richard 🙂
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