Eating and Drinking

[Karynleitner]

My husband (although still not diagnosed ) has difficulty eating. He enjoys food and does manage to eat most things, but really struggles. He has trouble with a spoon and fork, do I try to feed him many things he can just pick up of easily get on a fork in good size pieces. He has not choked with swallowing. I notice he seems to get a sandwich up to his mouth and hold it there a bit. Yesterday I was helping him eat somethings on a fork and observed that he seems to have trouble opening his mouth. I also have to encourage him to drink . He was occasionally choked a bit when drinking, but it is rare and minor.

His speech is clear and his voice as it always was. (Although softer ) , yet he rarely speaks . It's odd how sometimes he blurts out something very pertinent and clever , yet won't answer a simple question or reply to a loving grandchild. I think the loss of his communication is the loss of him. I is so lonely and sad and seems like we have lost so much of him already. I feel quilty, as I know he is in there . It is sad and frustrating .

Does anyone have any thoughts regarding his eating problems .

Karyn

[Escada29]

Hi, my partner also enjoys his food but now the mess he makes is getting worse as food and saliva just fall from his mouth. I ask him if it is a struggle (which it clearly is) and he says no. It scares me when he eats due to choking and coughing. It is all a nightmare. x

[Marie_14 in reply to Escada29]

Esc it is very scary as you say. My heart goes out to you. Sadly it will probably lead to aspiration pneumonia eventually. Some people recover from this but some don't.

Marie x

[Marie_14]

Karyn has he had a swallowing assessment? He needs one I think. If he coughs when drinking he needs thickener. He needs the input of the SALT team if he hasn't already got it.

You need to know if he will consider a PEG as this gets worse. Some people do and do well, others like my husband refuse it. You need to have the conversation.

Hugs to you.

Marie x

[Dadshelper]

Like already mentioned get a swallow test done. At home you can start cutting up foods into small pieces, no bigger then half a teaspoon size. One thing we did at first was to eliminate the fork/spoon and go with more finger type foods but eventually that didn't work and we took over feeding dad.

As for speech it's hard to say, Dad has told me he knows what what to say but can't get the words out sometimes.

Ron

[doglington]

Chris was able to feed himself with a spoon but not manage knife and fork. We cut things small. Then progressed to feeding him.

Now he has all food pureed and drinks thickened. He has decided against a peg, If he chokes he is in danger of pneumonia.

The communication issues are heartbreaking. When he could talk Chris said that often he knew what he wanted to say but different words often came out ! It took a long time to formulate the words. Now he can only squeeze hands or do " thumbs up ".

I can only say for you to try and focus on enjoying what he can do. Otherwise you will always be mourning what he has lost.

Love from Jean xx

[Mnd0vrmnky]

Either eating or drinking, never both at the same time.

[Kevin_1]

Hi Karyn

I'm with all of the posts here.

I would add that the mouth not opening enough is common in PSP. We just tried Botox to weaken the muscles closing Liz's mouth. The surgeon said that it would not work if the muscles opening her mouth.

It hasn't helped her open her mouth. I am told it does work for some people.

We have moved onto soft foods. To give you an idea lunch was a beef casserole with finely cut up meat and mashed potatoes stirred in. Liz can just about feed herself (the food goes everywhere so we use plastic aprons), but it takes her a couple of hours to eat it. So mostly a carer feeds her for her main meal and she has finger food for her supper.

She chokes on her food quite a bit. It gets caught up in her oesophagus and her cough is too weak to clear it very well. This, we were told by a speech therapist, is due to a slowed swallow reflex. The second movement in the swallow is delayed.

Hopefully something in this post is helpful.

I wish you both the very best

Best

Kevin

[Hidden]

Hi Karyn, my husband has trouble with a knife and fork, however, when clearing my Mum's home I found one of our baby spoons with the round handle and it works a treat because he hooks his finger through, I also find it excellent when I need to feed him, which is usually when he gets tired. Like everyone else has said chop everything you can small, encourage fingers where possible and ignore the mess! Thumbs up or down is another great help and watch out for 'no' meaning 'yes' and vice versa which can be very confusing and frustrating. If he starts to freeze when walking a good matching song helps. You will get such good advice from this site and it helps to know you are not the only one trying to cope.

All the very best to you both, Lesley