Recipe book/meal recommendations please

[Rose1sunflower]

My husband (diagnosed with PSP July 2021) loves his food but lately eating has become a problem. Meals can last over 2 hours as chewing and swallowing are slowed and added to this his arm and shoulder are really painful and he has trouble lifting a spoon or hand to his mouth. I can and do help feed him but he is desperate to do this himself for as long as possible. I can’t see some of our favourite meals lending themselves to being puréed and does pureeing food change the taste a lot? Any recommendations of books would be appreciated.

He is unable to lift a mug to his mouth to drink tea, he already uses a straw. Do you have experience of hydrant bottles? Is it difficult to use/suck using such a long tube?

Interested in your experiences.

[Millidog]

Hi Try this link on amazon for a number of soft food cookbooks amazon.co.uk/s?k=soft+foid+...

[Rose1sunflower in reply to Millidog]

Yes thanks, I’ve looked at those and I was wondering if anybody had a particular one to recommend. (Knowing me I’d end up getting the lot. Our local library doesn’t have any).

[Sun-flowerwearer]

Hi

My husband cannot feed himself as he can’t lift the spoon to his mouth or scoop food into the spoon and he struggles to swallow every mouthful. He has been on level 4/5 consistency food since October 2023. I tend to prepare mashed potatoe, sweet potatoe, broccoli and cauliflower and carrots as a base mash with butter and milk and then add puréed mince or chicken or fish to that and add a sauce. He likes sweet and sour sauce so that goes on most foods. The meals have to be like runny porridge consistency otherwise they sit in his mouth. Puddings are custard based or rice pudding out of a tin. I also add chocolate sauce and golden syrup to keep calories high.

As for drinks we use a sippy cup as he can’t suck on a straw and I lift it and tip it for him.

My husband is 63 years old now diagnosed last May with PSP. In the last few weeks his brain is clamping his jaw shut and unable to release it without me forcing my fingers between his teeth to break the freeze circuit.

Sad times

[Rose1sunflower in reply to Sun-flowerwearer]

Thank you for taking the time to reply and with such useful information, it is much appreciated.

So sorry to hear the difficulties you are having.

[Dancingbirch in reply to Sun-flowerwearer]

That sounds really tough. I feel for you both

[Zerachiel]

Hi, no recipe book recommendations but please see this for lots of info on food, diet etc for people with PSP

healthunlocked.com/psp/post...

[Rose1sunflower in reply to Zerachiel]

Oh thank you, there are some really good guidelines in the article which is what I need too. Much appreciated

[Bergenser in reply to Zerachiel]

Great one, thank you.

[REOC]

straws are not recommended if swallowing is an issue as they increase the chance of choking (too much liquid going in). As for puréed food - you can do more with it than you think. Mum has beef stew, red cabbage and mashed potato, fish pie, Thai chicken curry etc but you have to liquidise everything and mum is very bored of the texture. She wishes she could eat crisps! It takes her a long time to get through her thickened drinks (can take hours) but is faster now with eating as we feed her.

[Rose1sunflower in reply to REOC]

Thank you for info about straw and the meals. I just need to move with the present needs and adapt.

I appreciate your taking the time to reply, it’s been helpful

[lunarquasar]

Hi my advice to you would be to get the Speech and Language Therapists involved (SALT) as they will advise. My wife is on level 2 fluids and level 6 foods. Wiltshire Farm foods do level 6 foods so have a look at their web site where you can see what the meals look like. My wife uses the bottles you can get with a straw in and it is level 2 fluid in it which she manages quite well. Hope that helps.

[Rose1sunflower in reply to lunarquasar]

Many thanks for taking the time to reply. The referral to SALT is in place, still waiting…and waiting….have rung them again.

That’s a good idea to look at Wiltshire Farm foods for suggestions.

Thank you

[45purple]

Hi sorry to hear about your husband. Your husband sounds just like my husband. Our speech and language therapist sent me a link it’s on you tube just search level 5 soft diet. Anything you mash with a fork as long as it goes between the prongs 2mm is okay. Karol has been in hospital with aspirated pneumonia for 3 weeks no fluids orally so we had to go down the route of having a peg fitted as it’s the only way I can get him home. Hope you get the information you need 💜

[Rose1sunflower in reply to 45purple]

Thank you I will look at You Tube. Not sure why I felt so lost when I realised I had to change our eating habits, maybe it’s just yet another change to our routine and confirmation that things were progressing. Thank you for your reply

[45purple in reply to Rose1sunflower]

It’s a terrible disease. Up until 3weeks ago Karol was eating normal food just cut smaller like your husband then he aspirated didn’t recover this time hence the peg. Good luck 💜

[DreamWeaver1]

Hi There, you mention that he can use a straw. If this gets difficult there are "one way" straw that don't allow the fluid to fall back if suction stops. It makes it far easier to get the drink. This may be a down the road item, but good to be aware of. Here's a link. arktherapeutic.com/arks-one.... They also make a valve that can be used in any straw that does the same thing.

[Rose1sunflower in reply to DreamWeaver1]

Thank you, I haven’t heard about those. I’m sure it would help as he gets tired drinking now.