Eating issues: My husband was put on a puree... - PSP Association

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Eating issues

mthteach profile image
25 Replies

My husband was put on a puree diet by the speech pathologist. He was a 44 waist 18 months ago. Now he is a 34/36. Are there any good ideas out there that anyone has tried with pureeing food. He drinks everything from a straw. I cannot get him to take it any other way. I am just grateful that he is taking the nourishment.

When he sits at the table he has started falling to one side or forward into his plate. I try to suggest he sit in the recliner with a tray in his lap.

Having Home Health come out has really helped us both. Going into doctor office did not tell everything we are going through at home.

He still complains of throat pain. He has seen so many doctors for it, and they cannot find anything wrong.

I get on here every night after he goes to bed hoping to find something new to help him with.

I was grateful when someone on here recommended the throat electric machine, and our nurse said it works.

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mthteach profile image
mthteach
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25 Replies
abirke profile image
abirke

I wonder if it is his throat . he may have acid reflux...it does sound like you've done a thorough job finding out his problem. Is there a time more often that he complains? or maybe after a particular type of food? My husband is just the opposite inwhich he is desensitized. He has a huge lump on his back with a healed scratch....so injury has been there for a while but he's never complained about it...I don't see it often as it is right under the waist of pants.

Anyway you might want to put a PEG if you feel he has lost too much wt too soon. talk to dr. and husband.

AVB

jzygirl profile image
jzygirl

You could try getting him some suplament drinks like build up or complan and give him a couple during the day as well as his food if you are worried about his weight loss. Janexx

Folliott profile image
Folliott in reply tojzygirl

I make them into a super shake and add pureed fruit, peanut butter, whatever might add extra calories and protein. I use Ensure Plus which has 355 calories. I sometimes give them as his beverage at mealtime as well.

busylizzy2 profile image
busylizzy2

Mu lost a lot of weight on pureed food because she hated them and kept spitting the food out. I brought her the millshake drinks and she loves them. I think they are called fiji they are half price at Tesco at the moment. You can get all flavours. Mum likes the chocolate one the most. Best is we dont have to put any thickner in. Also it is full of calories and because they are chilled they will be calming if throat is painful. At 63p worth a try.

NannaB profile image
NannaB

Does your husband still feed himself? My husband decided one day that he wanted to be fed. He has liquidized and smoothly mashed food. He still eats a full meal and it takes about an hour to feed him but he always wants to empty the plate. I feed him in his recliner with a pillow down his right side and under his right arm as he also flops to one side. I always keep everything separate on his plate so he gets different flavours. We stick mainly to chicken and fish although I do give him sausages liquidised in gravy. He has potatoes with most meals and three or four other root vegetables at every main meal. Butternut squash is also good and broccoli or cauliflower. For variety, instead of gravy, I use sweet and sour sauce or other bought cook in sauces. He always wants the same for breakfast, mashed banana in Ready Brek. If I give him porridge I grind it finer first but it's easy with Ready Brek. For non main meals he has scrambled egg with various things in them; finely grated melted cheese, tuna, salmon etc. He only eats bread if it is crumbed and soaked in soup. Puddings are easy as there are lots of soft options. Colin likes "rifle", not quite trifle, as a quick pud. Swiss roll soaked in fruit juice until squidgy with squirty cream if I haven't the proper stuff. He also has coffee cake soaked in cappuccino if we go out for coffee. I also give him fruit smoothies, quite thick and with a wider straw.

C can do very little now and he looks forward to every meal. We went to our daughter in laws 30th birthday party yesterday. It was a bring and share lunch in the grounds of the school she teaches at. I made C a salmon mousse, very smooth egg mayonnaise and a creamed potato salad. He had birthday cake soaked in fruit juice?

He also drinks thickened drinks through a straw. I have straws in every handbag and several containers of thick and easy for when we go out.

I do hope your husband doesn't continue to lose weight. Mine has lost 2 stone in 5 years but was overweight to start with. He is now a 38 waist.

I wonder what the pain is. As AVP said, C rarely feels pain either.

I hope things get easier. Can your husband say what he feels about eating? Maybe it is just too much effort.C said it was for him when he asked me to start feeding him.

All the best.

Nanna B

mthteach profile image
mthteach in reply toNannaB

Nanna B, I need to copy your message for the recipe ideas. He has only been on the puree diet for 3 days. Maybe once he puts some weight back on we might try mash potatoes etc... The coffee cake soaked sounds like something he might like. I bought some yogurt last night and fed it to him. He liked it.

I printed the salmon mousse recipe from online. It looks good also.

My husband was over weight also. He was a size 44 and now he is a 34/36.

As far as my going back to work. We found out good news yesterday about his work continuing his Long Term Disability, and letting him retire so I can get retirement insurance through the company. It will be about 5-6 hundred. That is a little better than the 903.14 they quoted me the 1st time. Maybe there is a possibility that I can stay home with him. It is always better than me paying someone to come while I am at work.

NannaB profile image
NannaB in reply tomthteach

I'm so pleased about the retirement. I do hope you won't have to return to full time work. It will be so much better for you to be home making sure he is eating. I hope it all works out ok.

X

mthteach profile image
mthteach in reply toNannaB

NannaB,

Once your husband started on puree foods, how long was it till you had to start taking total care of him. Was it years or months?

NannaB profile image
NannaB in reply tomthteach

I was already taking care of him full time before he needed a soft diet. Everyone is different. He deteriorated in other ways before he started having trouble swallowing. By then he could no longer stand alone and speaking was very difficult to understand.

X

mthteach profile image
mthteach in reply toNannaB

NannaB,

It has only been 18 months since my husband was diagnosed. He seems to be going down hill fast. He is very weak (sleeps a lot). His legs have begun shaking at night when he gets up to go to the toilet. I have to tell him to straighten his knees out & do not shuffle when he walks. I do 90 % care for him. He is only 62, and it seems like yesterday he was walking without a walker. His is progressing faster that I thought it would (7-10 year range). Sometimes I feel like a yo-yo being pulled every which way.

A neighbor friend said yesterday something to me that hurt bad. We were talking about her sister and husband. The husband is disabled about the same length of time as my husband. She said her sister was dedicated to her husband and would never leave his side (go back to work). I felt like she was hinting that I am not dedicated to my husband because I was trying to go back to work. She is one to tell me to go without medical insurance to take care of my husband. I love my husband, but if we cannot get by without my working, that is what I will do. I just do not like to be put down for it. I have enough on my plate to deal with right now.

I'm sorry. I just had to unload. I have all but quit going to church because of the remarks. If it weren't for 3 beautiful grandkids living blocks away, I would leave this town. We have lived here 28 years.

Thank you for listening.

NannaB profile image
NannaB in reply tomthteach

Unload as much as you need to. That's why we are all here, to give support. Don't worry about what other people say. Your neighbour may think you are in the same situation as her sister but no situations are exactly the same. If you get a full time job, you will know when you will have to give up or provide extra care. I was in the fortunate position of being able to take my school pension on my 60th birthday when my husband was 63. He wasn't the only reason I left work. I also had a father in his late 90s who fell regularly so I was frequently called by the emergency services. I knew then I had to stay at home.

I had very strange reactions from people we have known for over 30 years. Some avoided us, some thought they knew what I should be doing, many wanted to help but if I didn't give them anything specific to do, they never came near us. Although I have a few very good friends in our church, when we couldn't get there for months it was people from the Anglican church who offered to give us communion in our own home. a member of our ukulele group asked me. He had only known C since PSP. I think those who knew him as a lively member of the church just had a job to come to terms with what is happening.

Some folk have surprised me. Yesterday I had a phone call from someone I haven't seen for 30 years. I worked with him when I was 16 and introduced him to C when we married 5 years later. C started going to a badminton club with him and did so for a few years. Chris knows someone who lives in our village and they got talking and Cs name came up. He rang to say could he and his wife come and see us both next week. He had been told how Colin was and said he wanted to come and talk to him about the fun they had years ago.

It's good your grandkids are nearby, they can brighten up the darkest day can't they?

I hope your husband has reached a plateau and has quite a while before he dips again.Don't concern yourself with others, you have enough to think about.

Soon be the weekend.....again, they seem to come round so fast.

Sending you a big hug.

X

Amilazy profile image
Amilazy

Mthteach you may need to get him referred to a dietician, though most of us like to lose a bit of weight (ok in my case a lot), it is not good for PSP (or any other long term condition). We tried puréed food for a year before Margaret lost swallow reaction, she lost about 33% of her weight, SALT team had to do an emergency referral to dietician and we ended up tube feeding( NGT then RIG). Margaret happier and healthier.

In meantime before GP referral to dietician try the milkshakes or the sports drinks with minerals but do not rely on them as he needs a balanced diet and unless you get the specialist milkshakes eg Ensure plus he will need supplements. Get Ensure on prescription as very expensive to buy off meds.

Good luck Tim

Yvonneandgeorge profile image
Yvonneandgeorge

Nthteach the dietician gave George ensure compact drinks , maybe you could try them, you get them on prescription xxxxx

mthteach profile image
mthteach

LOL, my sister coupons. She got me the Boost for 65 cents for 6 drinks. I have a pile of them. I bought a sports drink ( shakology) 108.00 a bag that last a month. He likes it. My son said it was full of protein.

My troubles is trying to figure out meals that are pureed. I have got the scrambled egg and tuna fish. I can put spaghetti in the blinder. I just need to look on line for different recipes.

Amilazy profile image
Amilazy in reply tomthteach

I put everything in the blender, Sunday roasts with gravy look horrible but they taste great. Pasta ok if blended with the sauce not very good if blended on own. If you over cook pasta or rice and then blend with the sauce very good. Margaret used to like my beef stews and lamb curries all cooked as usual so I had a meal and then blended. Great fun experimenting. Hope he enjoys it. Best wishes Tim

NannaB profile image
NannaB in reply tomthteach

As Tim does, my husband has more or less what I have. He loves his food. I think it is important to give as much variety as possible. I wouldn't want to eat the same foods every day and we all need a balanced diet. He also likes the different tastes so although meal preparation takes time I always liquidize everything separately, except casseroles. I put root veg through a potato ricer and he can manage them as long as they have enough gravy or sauce.

Have fun experimenting.

X

elizalou1710 profile image
elizalou1710

Mum lost 4 and a half stone then had a peg which has been wonderful for medication she is normal weight

cabbagecottage profile image
cabbagecottage

Where can I find the salmon mousse recipe please .,Bev do you go to bed or are u cooking all night lol ... every time I settle to do some John start calling me for something .

NannaB profile image
NannaB in reply tocabbagecottage

Colin never lets me complete a job in one go. Very frustrating isn't it. When Colin was well, he hated starting a job and not finishing it. Even if a meal was ready, he would have to finish whatever he was doing or get to a certain stage before he would leave it, gardening, DIY etc. After having to go to him about 4 times while I was doing something the other day, I reminded him what he was like and said if he were looking after me I'd never get fed, toileted etc until he had finished his jobs.

I cheat with the salmon mousse. When I entertained a lot I used to make it with aspic etc. now I cheat. I cook the salmon for a few minutes in the microwave and then blend it, either with hollandaise sauce from a packet or mayonnaise and ketchup ( same as bought prawn cocktail sauce). I add a squeeze of lemon and sprinkle of dried dill and put it in the fridge. It doesn't set like proper mousse but firms up a bit whilst still being soft.

For a hot meal I use the hollandaise sauce the same but he eats it straight away. I take the cold one with us if we go out and I don't know if there will be anything suitable for C, as I did on Saturday. Then I take mashed potato with mayo to go with it.

I've always enjoyed cooking so don't really find it a chore although I do hate washing up the liquidizer several times a day. All the boys were "cooking" before they were 3 and all of them cook for their wives. Our eldest opened his first restaurent when he was 32 and now has 2. Another one runs a veggie food business under canvass at festivals all through the summer.

Cooking comes easy to me but I really admire folk who can sew, knit, crochet etc at those things I am the worlds worst!

X

cabbagecottage profile image
cabbagecottage in reply toNannaB

I have to remind John sometimes that I have to keep myself clean and use the toilet . I carry the mobile and land line phone whenever I go the the bathroom lol .

have you thought about getting a second liquidiser . I must get a new one . the only one I have attaches to my old mixer . I don't use that now . what make have you got . yesterday I made a saucepan of potatoes to mash . I have been buying it to be quick if I go out .

ther is a saucepan of carrots and one of swede with some onions . I buy the frozen diced now . I was throwing them away all the time when I bought fresh . SAme with swede .

have you ever tried using grated nutmeg . I sprinkle it on Johns porridge now . My mums remedy for diarrhoea , to settle the tummy .

I am not sure it works but doesn't harm .

I have been buying the packet sauces recently , quick and easy , anything to try and make things as simple as possible .

I have always enjoyed cooking and would try anything . the trouble is John switches off when he and I expect it . I try to fit giving him his meals fresh but it doesn't always work . it ends up that I am not lays eating a s I should . I try and eat together as often as possible . I don't think I should though really ..

he always comes first lol

where are your sons restaurants and which festivals does the other go to . my daughter like to travel around to those

NannaB profile image
NannaB in reply tocabbagecottage

I do have 2 liquidizers. I've managed to break 4 but they were all under guarantee. I now have a Russell Hobbs one, an Andrew James soup maker, which also liquidizes and a Moulinex stick blender. I have grated nutmeg but never think to use it. It may help Cs colitis problems although he seems OK at the moment. All my meals are interrupted so I make the most of when I have a sitter or when C is at the hospice, to eat in peace.

Our son and his wife own a 4 bedroomed inn with a 47 seater restaurent called The Castle Inn, at Bungay Suffolk. He has a website. A year ago they opened a Pizza restaurent very close to the Castle. They didn't want to be in competition with themselves so they are very different.

Our other son goes to lots of festivals. The big dome he takes around in a horse box is called The Full Circle. He has a website as well. He doesn't cook at all the festivals as he is also in a band. At Glastonbury he played 5 times on four stages so left the dome at home. This weekend he is at Tribal Earth ( no idea where it is. Next weekend he is at Headcorn, Small World Festival ( we used to join him there) and whilst there, going with his band to Greenbelt before returning to his family at Headcorn. Last year our then 7 year old grandson said, " Nanna B, how many times have you been to Glastonbury? When I said never he replied, " What! Everyone goes to Glastonbury". Our youngest son helps him sometimes, erecting and dismantling the dome but he and his wife spend a lot of time going to the theatre and smaller theatrical performances. I always give them theatre vouchers for birthdays etc. they are friends of the Globe in London and spend many hours standing watching Shakespeare plays.

Got to go and give . His lunch now.

X

cabbagecottage profile image
cabbagecottage in reply toNannaB

You can tell them I haven't been to Goastonbury either lol ..

my daughter hasn't either but she goes to lots of others.

mthteach profile image
mthteach in reply toNannaB

I looked up your son's restaurant. Do you and your husband live close to your son? Does your husband get to try the interesting meals (blended of course).

That is so interesting.

NannaB profile image
NannaB in reply tomthteach

Unfortunately we are 130 miles away. Last year we managed to get there twice and had lunch so Colin had soup and an omelette but we did get to eat other food as our son cooked for us in the self catering house we stayed in. We can't stay in the inn any more as it is 400 years old, has uneven floors and no lift. Mark and his 3 year old son stayed with us and his wife visited when not working at the inn. He comes to stay here for a night or two about every 6 weeks and cooks for us then. Two weeks after they first bought the inn, 8 years ago, we went to stay with them. We arrived in the afternoon and within half an hour of getting there I was waiting on tables and Colin was washing up. Lunch had finished and the other chef had the afternoon off so it was just afternoon tea but it was as if a bus load had arrived. We were run off our feet. At that time I really wondered if they would be able to cope but they have. I really miss not being able to go there again. We had never been to Suffolk before they moved there. The sky there is so big and it isn't as flat as I thought it would be,mane the roads are so traffic free. Their house is a five minute walk from the inn but they are in Norfolk.

Enjoy the weekend. It is supposed to reach 30'c here so summer hasn't ended yet.

X

Auddonz profile image
Auddonz

My husband lost a lot of weight after his last stay in rehab. Has been home starting his 6th week hooray, and at last Dtrs visit had gained 13 pounds back. He hated that pureed diet and that is prob why he lost so much weight. He seems to have changed his eating likes and dislikes, doughnuts are at the top of his list. Is there something perhaps that he has been having a craving for? Perhaps that is why mine has gained back that much. His nurse at home has suggested letting him graze all day. He eats smaller meals but eats throughout the day. She also suggested Carnation breakfast which is less $ than some of the other liquid supplements. Ask him what he would really like, you might be surprised. I know doughnut are not the healthiest things for him but truthfully I don't care what he eats as long as he eats.

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