Not eating

[Eurohop]

Has anyone any ideas how I can get my husband to eat. I have tried all sorts but he just shuts his teeth and I can't get a spoon in and he his drinking through his teeth. When I ask him why he just ignores me it's so frustrating.x

[Heady]

Hi Eurohop, had this conversation before. Years ago I did work for the anorexia support group. The main conclusion was power. It was the only thing they had control of. I'm sorry, but may be that is what your husband is doing, controlling the one thing he has left to control. I don't know what you do about it, talk to your husband if you can, or accept he is in control, for the last time. My heart goes out to you. Advise, get help NOW, for both of your sakes!

Sending you lots of love

Heady

[Fadwa]

My father was the same , but now I talking with him from begging till the end of his meal don,t ask remind him about past beautiful days and still you need him and his strong and every thing his love if you think he don,t like the dish tell him that you know but there is vitamine, or minerals which will help in treating you. Some the have difficulty in swollen the liquid and others semi liquid for my father he swallow the semi liquid so you observe to know . I am giving food every three hours not more than 200ml for some times we try with him chinease accupantur I think it help. Best wishes and love

[jessybx19]

I some what agree with the control piece but I also believe that this may sound like it is part of the progression of the illness. The mouth can eventually shut down and he may not be able to control how it moves. In terms of ignoring, you know your husband best. My mom had similar feelings when my dad didn't respond to her. This too I believe is part of the illness. I know it is frustrating but I'm sure that he isn't ignoring you he just may not be able to respond or may be a delay in response. Remember that this aweful illness is affecting his brain. It was hard for my mom especially once he began to rapidly decline in health. She went from having a husband to taking care of another human being who need care 24/7. It's something they both didn't plan. Patience is the only way through this. This illness traps you in your own body. I can only imagine how my dad feels. How scared he maybe. I hoped you can figure out a plan that works for you and your husband and once you do know that that plan may have to be tweaked according to the needs of him and you.

In solidarity,

Jess

[Hidden]

Dear Eurohop,

I go along with Jessiebx 19. In my wife's case the swallowing mechanism gradually failed to the point that she feared she would choke or that solid food and even liqud food would go down the wrong way and infect her lungs. So in spite of my entreaties - on the spectrum from reasoning to anger to threats of dire consequences - Roisin ate less and less, lost 11 kilos and eventually refused to open her mouth. I had to invoke one of my threats which was to make an urgent visit to her neurologist whom we had both thought was not much use for someone with PSP, but he did an excellent job explaining about the PEG (nourishment pumped direct via a tube into the stomach), Roisin agreed and that particular problem was solved. She was fed overnight plus liquids by syringe three times a day and regained her strength including her ability to walk. In the end her fear was realised when she caught my cold (following a flu vaccination) and saliva and phlegm went down the wrong way and infected a lung. Roisin died in hospital a week later.

A lesson I learned and tried to apply after my wife refused to eat was that I had to respect her own judgement; her ability to reason and to respond to reason was unimpaired, so I had to restrain my temptation to 'control'. Not easy, given the anxiety!

Christopher

[jimandsharynp]

I'd put the food through a blender mix it with a liquid and shoot it between his teeth with a plastic syringe. However, my wife got to the point she wouldn't eat, her choice not mine. It is heartbreaking knowing if they don't eat they will die but they just won't eat. This disease if hell. Jimbo

[Gigi]

I have also experienced the same issues with my mom not opening her mouth or "refusing" to respond. When she doesn't respond I have gently taken her hand and said, "can you hear me? I know sometimes you understand me, but can't get the words to come out - and that is frustrating. Just squeeze my hand if you can hear me..." Every time she has slowly squeezed my hand so I know it's not really a "refusal" - but more of an inability... It is doubly hard because her facial affect is so blunted and appears to have either an "I don't care" or an"irritated" look. Neither of those are her intention.

Once I realized it was really beyond her control, I just said, "OK, well skip the good for now but let's try hard to get the liquid diwn so you don't dehydrate ." Using a straw she can usually get her sucking motion going.

This has helped me understand and alleviate the tension at those seemingly uncooperative times. By her squeezing my hand I know it's not her but the awful effect of PSP on her ability to make her own decisions... The PSP is stronger than her desires. It is such a cruel master. Best we can do is keep trying... I know at those hard times she needs to feel my unconditional love. It's very difficult for us both! ❤️

[zjillian in reply to Gigi]

Gigi,

This really helped me. Thank you for writing this.

Jill

[zjillian]

I do not know how far along in this illness he is. But sometimes if I just leave treats around...sweets especially, ice cream, cookies. He will "steal" them without my knowing. I have found that cold food is better than hot food and cookies and ice cream the only things he will eat. And peanut butter and jelly sandwiches. I have left him pretty much to eat or not eat as he wants. It is like with children, impossible to win that battle...actually it is pretty much all that he has control over. I will not force the issue. If his body no longer wants to eat maybe that needs to be respected.? It is hard to watch and also enraging. That makes me think that this is in part a power thing.

You have my sympathy, this is a hard fight. Try to not make it an issue somehow. Good luck, There are also those health drinks which are sweet.

Jill

Costa Rica

[zjillian]

Another thought about this eating thing. I think I feel guilty when he won't eat. Like I am starving him and "what will people think"..like I'm being a terrible person to just let him starve or get sick. I know that is a part of my complicated feelings around the food issue. My husband prefers to "steal" food when I am not looking. And I find him with a huge carton of ice cream and a scissors as spoon happy as can be.

Jill

[Eurohop]

Thank you all for your concern. We have talked and we are at the moment trying to eat again takes a bit longer but we get there. I feel so much happier now at least it is little but more often. I feel that he feels isolated being in bed and upstairs so I have now got the builders in to come and quote me for an extension so he feels that he is more with me.x