Eating poorly? Anyone had an issue of PSP patient not eating when swallowing is not a major problem, just small swallowing issue.

[jimandsharynp]

You cant force a person to eat so what do you do? Patient doesn't show signs of depression. Tough to figure out.

[carolinesimmons]

Is talking about it a possibility? Can she express a reason? Otherwise it must be very frustrating. Our culture often revolves around food and when someone doesn't enjoy eating, that can be an issue for an observer.

Caroline

[jimandsharynp in reply to carolinesimmons]

Caroline, I actually went through this with my first wife who had another rare brain disease CJD. I remember trying everything to get her to eat but she couldn't/wouldn't. I think it had something to do with the disease and was not a conscious decision on her part. Today I tried to get the Hospice nurse to find out why my current wife with PSP wouldn't eat and she told the nurse "I'm not hungry". However, if you aren't eating you would be or should be hungry. It was heartbreaking watching my first wife not eat because I knew it would result in a downhill slide. I remember crying because she wouldn't eat and begging her to eat none of which worked. Darn these diseases are so tough. I've decided that pressing her to eat just isn't working. It is upsetting me which I'm sure isn't good for her. I even ask her what she wants to eat and make it for her but she eats perhaps one or two mouthfuls and stops.

[carolinesimmons in reply to jimandsharynp]

Jim, I had no idea this was your second go at caregiving for a loved one with a brain disorder. My heart goes out to you. And, yes, I can see how distressing this non-eating must be for you. I'm so sorry. If you are a Christian, try to keep your focus on the reward after this life. Than you wife and you both can be at peace. My prayers are with you.

Caroline

[jimandsharynp in reply to carolinesimmons]

Caroline, Yes as a Christian my faith will get me through in the end. It's the in-between that is difficult.

[Keith246rk5]

Morning jimandsharynp At times I just can't be bothered eating due to the swallowing problems neck muscles

Sometimes will have a milk shake as easy to drink

Have had to give up cans of juice as it aggravates the neck muscles and makes swallowing hard

Thinking of you and yours Keith

[jimandsharynp in reply to Keith246rk5]

Thanks Keith. I guess I'll just ask what she likes/wants and let her have that and hope she will eat more than a few bites.

[Heady]

Hi Jim

Sorry to hear that your wife is having problems eating. Can't really be of much help, except to say forcing her is the worst you can do, but you know that. One bit of information/thought that may help, in Anorexia, the main part of people not eating is it's the only thing left in their lives that they feel they can control! Perhaps this is happening to your wife, subconsciously!

Love to you, going over yet another hurdle!

Heady

[jimandsharynp in reply to Heady]

Excellent thought and something I had not considered. Thanks!!

[jillannf6]

hi all

,my swallowing has not got worse over the last 3 yr bust ,my ability to eat nicely has i stuff

far too much food into myi mouth and once ive started eatign i cnanot stop and it goes everywhere1/

;;lol Jill

[Hidden]

Mum got to a point where she just found it too tiring and began to prefer things like custard and ice cream, particularly as drinking was becoming tricky and having everything thickened must take away at least some of the pleasure! I think the best thing is to just forget the square meal obsessions and just give them what they fancy. An issue mum faced towards the end was trying to clear her mouth (as after all, their tongue is also a major muscle and becomes weaker and less able to sweep away food from around their teeth and gums) The first time I became aware of this was one morning when mum still had small bits of chocolate cake in her mouth from where I had fed her the night before. At first I felt terrible and blamed myself for not checking her teeth were done properly by the evening staff at the care home but it was the beginning of yet another problem for poor mum. I was aware that even this had become a huge effort for mum and no wonder she was losing interest in eating. If your loved one wants porridge in the middle of the day or custard for breakfast-well why not? If they are getting sustenance and some pleasure from it that's all that matters. You can always top up with a drink supplement if you are worried. xhugs, Dianne

[jimandsharynp in reply to Hidden]

Yes on giving them what they like. It's just tough to see the weight loss happen.

[SharonAB]

Dear Jim,

My sister lost the sense of taste and muscle strength. 'Tetra pack drinks as food replacements became a way of life.

What happens with PSP - I do not know - Is there any similarity?

Regards, Alana - Western Australia

[jimandsharynp in reply to SharonAB]

Thanks I'll check them out.

[Sharon637]

Hi Jim

Yes my Dad did this. Swallowing solids was never a major problem for him but suddenly he just seemed to go off everything and would only pick at things, even his previous favourites. Then he just stopped eating completely. I never thought it was a concious decision on his part to end his life by not eating. I genuinely believe he just didn't feel hungry and therefore didn't associate any danger with not eating. It is obvious now that it was the beginning of his body letting go, not being able to use the food and therefore he didn't feel any hunger at all. He couldn't use the food supplements as they were too 'gloopy' and thick and made his choking really bad. However, he did go through the odd phase of not eating much in his final year, then would pick up just fine again. I have read on so many hospice sites never to force someone to eat as it is the worst thing you can do and I went through it with my Mum too who died of cancer. I hope this is just a phase for Sharyn and she will pick up again in a few days. Sometimes these phases would last for a couple of days to two weeks with Dad before the final one. Although it is frightening and frustrating as a carer, trying to tempt a little is the best we can do and if it's a no it's a no. My Dad couldn't talk but he just refused to open his mouth when I held up the fork or spoon. Daughter Mo is right, whatever and whenever they fancy something, so with it! It's about the best we can do. I used to dip cotton buds in a very watered down mouthwash solution and run them around his mouth to clear away debris and thick saliva between brushes. Good luck and I hope Sharyn has a craving soon xx

[jimandsharynp]

Sharon, thanks for much for the information. Although her eating as been pretty much fruit (pineapple, peaches, and oranges) she said this morning "I need protein". So at Easter dinner I did some chopped meat cooked with spices and mixed in with some mashed potatoes. After a few bites she acted like she wanted something and when I asked she said "ham". We were all enjoying some nice Easter ham. So I minced up a bit and she got it down. She must have liked it because this evening I when I asked what she wanted she again said "ham". So four bites of ham were swallowed. Doesn't sound like much but getting anything in her is wonderful. I'm not getting too excited as tomorrow and each day with PSP can be different and a challenge. The mouth wash idea is excellent and I may try that when saliva builds up. Supplements aren't her cup of tea either, like your dad. Pineapple seems to work to clear the mouth of icky saliva, at least for Sharyn. Again, you're the best and thanks for your post and ideas. Jimbo

[Sharon637]

So glad to hear Sharyn fancied something and was able to communicate it to you! Delighted to hear it. It's such a joy when you finally get the one thing that tempts them to eat. It maybe doesn't sound like a lot to eat but for a sufferer it probably felt like a major achievement to her as well as you. It's great that you managed to have a happy moment on Easter and hopefully it will continue. Well done you for being such a great carer and for Sharyn for rallying round. Your always in my thoughts xx

[jimandsharynp in reply to Sharon637]

Sharon, thanks for your advice. More ham went in at lunch today. I just minced it up and she had about five bites. Lots of fruit this morning for breakfast also. Life is good..........at the moment LOL

[Frances41]

Hi Jim

It goes through stages: chop their food up, chop it up smaller, blend the food, then ensure supplement drinks with added nutrients e.g. Vitamins and minerals, then may be a tube last fitted. The Speech Therapist, doctors and specialists will advise you on all this. They are stages and procedures to prevent the person from choking and getting Pneumonia.

Godbless while we pray for a cure.

[jimandsharynp in reply to Frances41]

Thanks Frances for your thoughts. Much appreciated as are all that post on this forum.