palliative care: hi. My mum Frances is now... - PSP Association

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palliative care

Lalamccoy profile image
4 Replies

hi. My mum Frances is now having palliative care for CBD. She is cognitive but very little swallow and so very little strength left to dress/walk etc. sadly no speech.

Is there really nothing more than a highly calorics yoghurt available for her to eat?

it’s so so sad watching this cruel disease . Her sleep is sporadic and poor quality due to shallow breathing

So many services involved but so little relief for her symptoms.

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Lalamccoy profile image
Lalamccoy
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4 Replies
messier profile image
messier

I’m interested in what people have found to provide variety once at the stage of just liquidised soup consistency. Particularly in savoury meals. Mum is steadily losing weight but put on quite a bit early on when she lost mobility and could still eat fine so that’s keeping her going.

Kasenda profile image
Kasenda

Have you spoken to the dietitian? They may suggest Fortisip supplement. Sorry it’s a difficult journey for you both.

sammy90210 profile image
sammy90210

The only thing my dad could eat was "Ras malai" which is a milky pudding that's made in Pakistani and Indian sweet shops - I would add some protein powder to it to aid in digestion and help avoid constipation - plz see if you can find it in your neighborhood

LARWLSN profile image
LARWLSN

we basically pureed anything and everything. Savory, sweet, whatever. There are protein powders that can be added, but be careful, some can cause really bad constipation. We didn't last very long in this particular phase of pureeing. Mom wound up in renal failure.. we thought she was getting enough liquids, but she wasn't, as it turned out. She faked out everyone, including a doctor who saw her only 36 hours before we rushed her to hospital. Good luck.

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