PSP: To do what's medically recommended or... - PSP Association

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PSP: To do what's medically recommended or respect my mother's wishes? Advice needed.

Callunas
Callunas

Hi Again,

I am in need of advice. My mother has PSP and is now having trouble swallowing even soup. She's requested a regular solid diet rather than mince or liquids. I told the dietitian that my mother can make her own decisions and doesn't need me (as POA) to make decisions for her.

On the other hand, the dietitian doesn't think she can handle them. She was recently visited by a swallowing specialist who recommended a liquid diet. She basically just plays with her food now and will sit with liquid in her mouth, trying to swallow, and end up spitting it all out.

I want my mother to have the best while she can. She's not getting better. Do I respect her wishes or do what I'm being told is best for her just to keep her around for longer?

I guess I'm of the mind that people can choose the way they want to die if they're in pain. I'm rambling as I'm pretty confused. Any help at all would be appreciated.

14 Replies

I let my husband make his own decision when he decided he no longer wanted to receive food or water through his PEG. I didn’t want to be accused of neglect so I called the GP who came and explained to him that he would die within a couple of weeks and asked him to agree that was what he wanted. He indicated yes by putting his thumb up.

If your mother continues to try and eat solid food she may choke and end up with aspirational pneumonia and all the horrors that can bring but if she knows that and still wants solid food I personally feel that it’s best to allow people with a terminal condition to make decisions they can still make. There is very little else they have control over, I think they should have control over the most important decision they will ever make if they are able to. She may be holding things in her mouth on purpose. My husband was still able to swallow yoghurt but spit it out once he had made his decision.

Ask her GP to explain to her what will happen and see if she still feels the same.

The last 11 days of my husband’s life were the most peaceful, stressfree days he had had in 6 years.

My thoughts are with you at this distressing time.

XxxX

I'd follow her wishes BUT have her doctor explain the dangers of aspirated pneumonia and the effects of not getting enough nutrients. It's her life and she should have some control over it as long as mentally sound plus able to communicate.

Ron

My son had two bouts of aspiration pneumonia. The first was taken care of at home with antibiotics. The second put him in the hospital for 7-8 days. He came home with a PEG. Five weeks later he REQUESTED to no longer be fed.

We live in Los Angeles, Calif. My son died May 4, 2017, just barely 55 years of age. He was under home HOSPICE and they were aware of his wishes, and honored them .

As one who has lost a son to PSP, I share with you that for me guilt is part of the greieving process...."I should have done this...why didn't I do that....etc"

You can get aspiration pneumonia from your own saliva.

I would encourage you to honor your mom's wishes. I would want that for myself. I am 77 years old.

Blessings, M

Dear Callunas: Can you give her the best of both worlds? Give her a liquid or mince diet for nutrition but also let her have a bit of solids to "chew" and spit out? Maybe that would be just enough for her to enjoy. You'd maybe have to try to get her to agree not to try to swallow...??

Anne G.

Once my husband gets something in his mouth it is like trying to get a bone from a dog. He will not eat anything with that thickener either. I make homemade soup . R loves potatoes so I make a big batch of mashed potatoes scoop with an ice cream scoop onto a tray to freeze the balls .I bag them and put one scoop or two in his soup. He loves it and it is just the right consistency. I let him eat what he wants and try to keep caramels etc out of his reach. They are deadly however he will bite your hand if he gets a hold of one and you try to take from him. If he dies with chocolate in his mouth and a smile on his face so be it. It is his choice in the and I will live with it.

So very little they can control, right? At least they have this :-)

Hidden
Hidden

Took my husband to Doc today because of his choking and coughing today,the Dr explained what will happen if he still wants continue drinking fluid without thickener and that it's time for a soft diet. Not to sure if he will ever agree to thickeners but I think he has come around to the idea of soft diet.I'm also going to be giving his last meal of the day around 4 o'clock,he seems to get worse as the day goes on.

Dee in BC

raincitygirl
raincitygirl in reply to Hidden

Good luck with the new routine Dee. Hope it's less stressful!

kandk
kandk in reply to Hidden

Hi Dee, we just went to a swallowing therapy appointment for my husband Kurt. The therapist made the comment that just as our global body muscles get tired by the later part of the day so do the muscles used for swallowing. Good for you to realize it is happening and move your meal to an earlier time. We are into a string of changes right now that make it difficult to guess what is the next best step. Have started to add thickener to thin liquids but he doesn't care for the texture. He seems to swallow solids OK still but seemingly has no sense about how big a bite he is taking or that he is still chewing when he starts to put the next forkful in. Makes me the bad guy to always be reminding or regulating how big the bite and the need to chew/swallow first. Kathy

Dear Callunas

I was in a similar predicament earlier this year. My Mother was in End of Life care (not PSP but frailty of old age - 98) and getting increasingly weaker. The nurses wanted her to go into a nursing home but she was adamant that she stayed in her own flat with care 24/7. She was deemed able to make her own decisions, so stayed there with amazing support until she died about a month later. I know the circumstances are different but...

I hope this helps.

My heart goes out to you at this difficult time.

Huge hugs

Anne

There is so little control in PSP and I believe we have a right to make our own choices and decisions. Absolutely agree with others - get a healthcare professional to explain to your mom the risks involved if she is happy to take those risks this is her choice.

Whilst it is warm would she enjoy a fruit smoothly or iced coffee - these can be fortified with creamEtc to get more calories in. My grandmother spent the last few months of her life happily living on a diet of profiteroles!!

Sending love and a hug - and acknowledging horrible position you are in

Tippy

Callunas,

My husband, like your mother, will sit with liquid or pureed food in his mouth until he finally spits it out, but still does well with a lot of solid foods as long as they're not too stringy like some meats. This is just my observation, but I feel like "real" food may trigger his swallow reflex more so than thinner foods. I would so much rather see him happy than worry about aspiration pneumonia which, by the way, he has never had. My husband can't really communicate his wishes anymore so he possibly doesn't swallow because it's his way of expressing his displeasure with pureed food. Who knows? I feel like the medical profession's job is to prolong life in any way they can, It's not so much about quality of life. At any rate my vote is for a patient's wishes over medical advice. Some of these decisions we have to make in our loved one's behalf are difficult so I hope that this is helpful to you.

Hugs,

Pat

My mum passed away this year from PSP. The last 8 months is when she lost a lot weight. It was very rapid the last two months. I believe she passed from lack of nutrition towards the end. She had a health care directive, no tube feeding. It's not easy this dreadful PSP. Mercifully my mother passed away peacefully after living with the disease for 8 years or more - PSP symptoms start but you don't catch on till later with a diagnosis. If she can't swallow and she has expressed the wish for tube feeding then consider that avenue.

Hi Callunas!

I guess after 7 months he has already found some solution. Anyway, I send our experiences to you in case they are useful.

Hugs and luck.

Luis

Prevent solids or regular liquids from reaching the lungs to avoid eventual “aspiration pneumonia,” (Besides falls, this is another very important risk.)

• Add thickeners (eg, Resource from Nestle, Thick-it, Simply Thick-Easy Mix, CVs) to drinks (soups, water, Aquarius (*) orange or lemon or similar without gas, etc.) till obtain a bit glutinous liquid. To drink, it is advisable to use a special cup (Ornamin 815) with the chin as near as possible to the chest. Some mango and peach juices have an adequate consistency.

(*) Isotonic drinks are interesting to help maintain blood electrolytes at the correct level.

• The food must be moderately doughy and in small pieces if solid.

• The speech therapist has insisted that she should not take meals that "deceive" the mechanism of swallowing that is damaged. The foods that “deceive” are those that have liquids and solids in the same bite (eg, some beans with soup or a soup with pasta).

• Check the patient is sitting fully upright to eat and try not to have distractions around while he is eating.

• Making a puree with a hand blender is always a solution, but it is preferable to crush with a fork until a homogeneous paste without liquid and so as not forget the function of chewing. What is not used is lost!

Foods: Mediterranean diet emphasizing on fruits (peeled fruit avoiding the presence of seeds) and vegetables; high fibre diet... no so much pasta or potatoes (always with a size of each piece of pasta between 1/2"- 3/4"). Fruit compotes in small pieces or better crushed using a hand blender. Dates, avocados, bananas, yoghurt, custard and ice cream are well tolerated. Thick milkshakes from Wendy's (Frostys). Mango juices usually have an adequate consistency. Try jelly. Avocado and dates provide magnesium, avocado and mango fiber and bananas the potassium.

During the meal avoid distractions such as: TV, radio, noise. Relaxing music can help.

In line with these suggestions, I introduce a phrase by Kevin (from chat group HealthUnlocked): "Food and favorite foods are really important. Food is is comforting and if familiar it gives so much pleasure in a diminishing world."

Luis

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