Don't know what to do

[Kenfa]

My Father is bedridden. We've been told that all food needs to be pureed. All liquids need to be thickened. Last night he wanted food unaltered. I didnt want him to choke so I refused him. He was so upset that he cried. I feel so guilty and don't know what to do

[doglington]

Its so sad, Kenfa. I had the same experience with my husband. I know had bad you feel. However unpuried food is bad for him.

This is a cruel disease.

Big hug from Jean xx

[Kenfa in reply to doglington]

Thank you for your reply. I'm feeling incredibly guilty.

[doglington in reply to Kenfa]

Don't feel guilty for treating him how you have been instructed.

[MaryAOrmonde]

It's so sad Kenfa. My Dad loves his grub. I feel so bad that I eat a lovely sunday roast and my Dad had mashed potatoes with a soup over them. I felt so guilty last week, I brought him in a cookie, sugar free. I made him a latte in his suppy cup and broke the biscuit into tiny crumbs and fed him. It wasn't long before he started coughing and I had to sit him forward and bang his back as it caught his breath. I won't be doing that again no matter how guilty I feel...

[Zeberdee]

We all feel guilty for doing things that our loved ones dislike unfortunately as sad as it is there is no alternative. Jx

[Pentland]

My husband now needs his food at a Level D consistency i.e. mashed texture. I buy it from Wiltshire Farm Foods. My husband has always enjoyed his food and seems to be happy with the bought in food. Wiltshire Farm also do Level C food which is pureed. There is a very good selection and it is delivered to your door. Hope this helps. Good luck.

Margaret

[Heady]

Try giving him food that is natural soft. Curries, pasta dishes, food that looks pretty much the same whether pureed or not.

I agree with the Wiltshire Farm Foods. I used them for the last months of Steve's life. They come in trays, with the peas looking like peas, Pureed carrots, in the shape of carrots. Slices of meat. Food looking like food should. Taste not bad either. Certainly, it was better than my attempts.

Lots of love

Anne

[enjoysalud]

I am so sorry. I feel so sad for you.

[Jafarrar]

Thats rough. I know that made you feel bad. You have no choice. Hang in their. God Bless

[Hidden]

I know it's so hard to not feel the guilt but as many have told me 'guilt is a wasted energy'. My dad is bed bound also & desperate to get out but he's too poorly & at end of life now. Nurses tell me I have to be cruel to be kind by protecting him against the consequences of getting out of bed. I can't manage it and he's too poorly. Such hard times xx

[Marie_14]

Kenfa

Talk to him. Explain that he will choke if he doesn't have his food pureed. My husband couldn't drink with the thickener in his drinks so I gave him drinks which were already thickened. He was happy with those. Have a look and see what you can see?

Marie x

[AmandaF]

Hallo, Kenfa,

I am so very sorry for you both. What a horrible situation.

Let me tell you about my own experience with my mother, who had PSP and developed swallowing problems in the last three years of her life. My mum's experience may not apply to your father, but just in case it does here it is.

When my mother started to have swallowing difficulties, hospital physios immediately switched her to pureed food and thickened water, which she found repulsive and made her very miserable and despondant. When I got my mother home, I thought that actually, my mother should decide about her diet and any risk involved. She was still very mentally in control and was adamant that she wanted to continue to eat normal food. And so we continued with normal food, for another two years - until she died, in fact. During this time, her swallowing deteriorated further. We did remove certain foods from her diet, but we learned how to help my mum eat carefully, by separating mixed consistency foods, by peeling fruit, by encouraging slow eating. So my mum was able to eat a more or less normal diet until she died. This was incredibly important fr her quality of life. I must admit that she did sometimes choke and that it was very frightening at times for both of us - but my mum made the decision and I honoured it.

And so my mum was able to take a little pleasure in a green salad, a cup of coffee or a glass of wine right to the end. When you are bedridden, incontinent and when speech is becoming difficult life affords so little enjoyment.

At the end of my mother's life I heard about risk feeding. Some healthcare professionals believe that it should not be automatically assumed that a person who develops swallowing difficulties must adopt a soft diet. In some cases, quality of life and the person's own preference should be taken into account. If you google "risk feeding" you can read about it.

Obviously, every PSP patient is different and what suited my mum may not be right for your father. But perhaps you might get another opinion - perhaps a GP, a neurologist, a speech specialist or perhaps a palliative expert at your local hospice. If you say you just want to consider all options for your father, you might get alternative advice.

Again, I'm not suggesting that you ignore the advice you have been given for your father. Clearly not. But perhaps talk to people about the feasibility of "at risk feeding" for your father. Here is a short guideline but there is plenty of material on the internet, although mainly directed at healthcare professionals, of course,

bgs.org.uk/powerpoint/2015s...

Anyway, I am so very sorry to read about your father. I hope you both are getting good support and advice and are not alone.

Amanda.

[LuisRodicioRodicio]

My wife suffers from PSP. The first symptoms will be presented in March 2012. The definitive diagnosis was in June 2015.

My experience on food (In general I agree with Amanda) :

Prevent solids or regular liquids from reaching the lungs. Add thickeners to drinks (water, Aquarius orange and lemon). Relatively doughy food and solids in small pieces. Mediterranean diet insisting on fruits (peeled fruit) and vegetables. Fruit compotes in small pieces or passed by mini-pymer. Ice cream are well tolerated.