Lord77

[Lord77]

My husband has had PSP for about 6 years he is unable to walk anymore and uses an electric pride chair in the house, but a new change has happened he used to love his food ( he is still able to eat ok)he has lost interest in food gone right off veggies no matter how I do them not interested in any of the meals he used to love,he likes something then he doesn’t trying to organize what he would like is becoming a very trying time, he loves ice cream and fruit and fruit cake which is all sweet, he still likes prawns and some fish at the moment ,I have asked him to tell me what he would like but he says he doesn’t know , I am really worried he will start loosing weight has anyone else had this happen , any suggestions would greatly appreciated .

[Heady]

I would stop asking him what he wants. Give him what you know he will eat, even if you have to give your husband the same meal every day, it doesn’t matter, I doubt he would even notice. My husband could not even think about what he would like to eat, much less be able to communicate he’s likes or dislikes. Make it look as colourful as possible, don’t even worry about nutrition, calories are all that matters. In my book anything I could put extra thick double cream, worked for us. Mostly into rice pudding, which was all I could get down him in the end. I know this is heartbreaking and very hard to cope with, but please try not to make meals into a battle. I did and I really regret that now.

Sending big hug and much love

Lots of love

Anne

[Lord77 in reply to Heady]

Thank you all for your suggestions it has been a great help and given me some ideas of what to put in his smoothies as he likes them at the moment .Bless you all for your interest Pamela

[westcoastgirl]

I would agree with Anne. Give him what he wants and what you know he’ll enjoy. You can add protein powder to food and supplement with drinks. My mum lost her appetite towards the end and just ate a lot of comforting soup which is blend as much into as I could.

[Boyce3600 in reply to westcoastgirl]

Did u mean u pureed the food for your Mom? I am having a similar issue and most all now is pureed soups, carrots, and fruits. That has been one of the hardest things for me as the variety is very small. Yes, calories, calories, but so hard with such a small variety to choose from due to the need for pureeing. He doesnt verbalize, but comments "Mmmm "if it is something he likes. God Bless you.

[key4u]

Dietician will count calories, monitor weight and supply calshakes if necessary. Can be blended with fruits too. Calshake is like an extra meal so if he is too tired to eat one day then you have comfort that on previous days he had that extra one.

If he can’t walk just because of balance it’s a good idea to have him up on stand aid, or powered stand aid to keep legs strong and helps with digestion.

Agree with others, making decisions is too much effort just make all the meals you know he likes. And questions while eating like “have you had enough?” must be avoided because it’s dangerous to distract while concentrating hard on swallowing.

[Jkhakh2]

My husband used to love mashed potatoes and would gladly eat them everyday...and you can puree lots of stuff into them and they are still palatable! Veggies, meats, beans or rice. He wasn't a gravy person but I imagine adding a little gravy would make it even tastier.

[Drjazz]

I've lost 30 pounds since I was diagnosed and I wasn't overweight to begin with. I don't really know why, since I still eat, though it takes me twice as long. My tastes have shifted, I like a lot of sweet stuff now. I don't worry about it, because I need the calories, any kind of calories, to keep from losing more weight. So I say, load up on the sugar and cream.

[David750]

I agree with Anne. Consult your dietitian, accessed through your GP. In the UK you can get fortified food on prescription to balance reductions in other feeds. My wife did not like sweet things but with PSP she took more and more, taste buds seem to be affected. Stay with what they like even though a limited variation. Difficulty swallowing can put them off some foods. Be prepared to liquidise in time.

[Tippyleaf]

Agree with Anne don’t worry about a balanced diet go for calories and pleasure. My hubby developed a very sweet tooth and many a day he ate only Tiramisu, trifle or other dessert. On days he could verbalise what he fancied we absolutely went with that but many days he could not make a decision even between A or B.

Protein powder, butter or cream added nutritional content

Love Tippy

[Lord77 in reply to Tippyleaf]

Thank you am now giving smoothies with protein power ,fruit , and small amount of carrot and beetroot or other pieces of vegetables in coconut water and Probiotic Kefir yoghurt with teaspoon of honey, which at the moment he loves , again thank you all for your help

[Cazash]

Can only echo everyone else’s comments. Dad was a very quick diagnosis to the end over several months so we had to learn very quickly. Even if he couldn’t tell us we just made his favourites and added as much calorific value as we could. Sweeter the better. One thing he loved was good old jelly babies and would actually suck on them til they dissolved. Never wanted to chew them which we all found hilarious to watch. Gummed then into submission.

Ageee with the comment don’t talk whilst they are eating. Didn’t realise how much you needed to concentrate to chew and swallow until having to feed dad on occasions.

Found large grip cutlery with the bendable ends very useful too. Helped him maintain control of eating action longer than would have with normal cutlery

Whatever you do is the correct thing. With PSP there is never a ‘wrong’ decision to be made.

Take care and stay strong 💪🏼

[Cocodunny]

My mother began saying she didn’t want anything to eat but after a while and worrying, we just started putting food in front of her. She gobbles it down. We did change to smaller portions and simpler foods as she spends much time in bed. Last week, I made a bunch of mini sandwiches. Chicken & egg salad on mini croissants. And banana bread and cream cheese. These combos hold up pre-made in the fridge as I don’t live with her, but she has caregivers. She was a gourmet cook and loves good food, but I have figured out that a large meal can be daunting for someone in decline. I had been making the meals simpler, comfort food and smaller portions when they were full meals. She used to give me ideas about what she wanted but can’t really come up with anything anymore. We gave up on super healthy and kind of went to whatever she would eat. She used to eat sweets on her own, the the banana bread with cream cheese had been a healthier substitute for that.

[Caro2132]

There is no way Mike can eat any solid food now. We blend everything and found baby food in pouches the best solution for variety and easy to feed him. Thickened cranberry juice can add calories. But the weight loss is ongoing.