My 52-year-old sister has been in a nursing home since July 2017 when she couldn't be cared for at home with her PSP. In December 2017 she began receiving hospice services. Now, it is the end of April 2018, and she has lost 34 pounds in the past two months. I was visiting her today and was surprised that no one brought her lunch tray at 11:30 a.m. Finally, at 12:15 I went to the dining room to ask about her lunch. The aide told me that Diane had said she didn't want to eat lunch. "We have to ask her and she declined." I returned and asked if she wanted to eat lunch and I encouraged her and she said yes. So, I fed her the 10 bites she would eat and the water and milk. She can barely talk or open her mouth and swallow. Her eyes are closed. She is frozen from the neck down. Although I see her daily, I was horrified. I thought they're starving her. So I went to talk to the nurse and asked what I suddenly was realizing: She is refusing to eat because she is dying. The nurse told me this was her way of controlling her situation. My sister has lost so much weight because she is dying. She will not receive a feeding tube. I am just stunned to know this. How long after a person stops eating and cannot eat does that person die? I cried and the nurse and the aides comforted me. I went back to her room and told her she has the right to say yes or no to eating. She already had this option, but I had not known. A friend of mine told me her mother died of starvation at the end of her long illness. The dying body doesn't want food in the system. It is painful to have it. I don't know how long she has left.
Eating is optional for my sister - PSP Association
Eating is optional for my sister
I am so sorry. I know how difficult it is to loose one so young.
My son was 55 years old when he died of PSP, May of 2017. He too decided he did not want to be fed. Five weeks before his death he was in the hospital with his 2nd bout of aspiration pneumonia and had accepted a PEG. The PEG caused him much discomfort and he finally decided he did NOT want us to feed him.
I encourage you to tell her how much you love her, how you will miss her, how you are grateful that you had HER for your sister. You need to express to her (tell her) all the love in your heart and in your head. The love you express to her will comfort you after she is gone.
I keep you in my prayers
So sorry and so sad, sending you a big hug. Xxxxx
Thank you...how could I survive without this site?
Yes I feel exactly the same xxxx
Prayers. Xxxxx
So sorry. Sending prayers and hugs xxxx
Dear Pages;
This is so heartbreaking: You have very little time left with your dear sister. I echo what Enjoysalud said: Tell her all the love you can: that will comfort her - and you!
There is a string of posts from 4 years ago "How long does someone have then they quite eating and drinking". Some of the replies further down the string tell of examples of people living from a few days to as much as two weeks without food. Often they are on morphine or other strong pain relievers so they don't suffer.
I send hugs to you as well. Stay strong XXX
Anne G.
My son, Jeff, had his last PEG meal on Sunday. Hospice stopped his water on Wednesday. He died Thursday at approx 8pm.
I am so sorry that your sister now no longer wants food or liquids but sad to say that I was told as the body closes down nutrition is not required. My hubby passed away in December and was given morphine via a syringe driver so any pain is controlled. He lost a tremendous amount of weight and to watch deterioration is heartbreaking. Keep telling your sister how much you love her and remind her of all your happy/funny times you had together whilst holding her hand. My thoughts are with you. Hugs Jxx
Hold her tight, you may want to stay over, i found those night times so peaceful, you can talk to her about old times. The realisation is hard though.
Julie x
Hi Pages,
I am so sorry to hear of your situation it is truly heart breaking.
My dad died 2 weeks ago (today) and much like your sister he stopped eating towards the end. He ate smaller and smaller amounts and we could see he was nearing the end stage.
He last ate on Tuesday 10th April, at which point he aspirated. From.then he deteriorated rapidly, receiving only small amounts of liquid until Thursday 12th April. From.this point we stayed with him in shifts round the clock. He didn't take any more flluids after Thursday and passed away on Monday 16th April.
To echo what others have said, spend time with your sister, enjoy (if that's the right word) the peace and quiet with her.
My heart really goes out to you xx
Hi that helps me too Martha, Leon (hubby) has cut down on his amount of feed via P.E.G. at 1st I kept sneaking extra in, but thought, you know what, it is his choice, 8 years plus of P.S.P. I thought last week I was going to lose him, he was really low, but bloody heck today he had me playing Bingo for him, ughhhh, who knows.
That see-sawing of emotions/expectations is so wearing!! 😔
Absolutely horrid. This site has been such a support for me.
Thank you everyone Hugs Marg H
I have been made aware of the fact that Ben will stop wanting to eat and drink so am now giving him that choice. He also has lost lots of weight and increasingly declines food and drink after a few mouthfuls. It is such a painful process to watch. Luckily he sleeps most of the time and I am glad of that, at least he isnt laying awake just suffering from the dreadful effects of this awful disease. I have all meds ready for syringe driver as recommended by the hospice and Parkinson's Nurse. I fear the end is not too far away but may be wrong.
Sending you much love
Kate xx
am sorry for what you are going though. dad has had PSP for 7 years now and last week he aspirated and was hospitalized. we been told we have a days with him maybe a week or 2. like your sister he has pain when eating or drinking. he has refused PEG 4 times before. we bought him home so we can enjoy the remaining time. instead of hospital where they just seem to poke with needles and cause needless distress. it a sad situation you are facing to. send you all my hugs love and prayers in abundance..
So sorry to hear what you are experiencing, my thoughts are with both you and your Sister at such a sad time. Sending big hugs to you both xxx
Hello pages
We are only a small step behind you. Liz was refusing food not because it was something she could control, but because she had had enough of life with PSP. Its a brave decision which I respect.
Sending hugs to you both.
Sorry to hear , your dear liz is refusing food....Brenda
Hi Brenda
Thanks
She was refusing food, but after a bit of a talk she started again. However she doesn't eat much and the weight is falling off her.
We are doing all of the high calory feed stuff.
One day at a time.
Best to you
Kevin
So sorry tonhear this Kevin. My thoughts are with you and Liz
Thank you.
Such a hard hard time...😔
Thinking of you Kevin XXX
Anne G.
Thank you.
I offer my prayers to you and Liz during this tough time. May she find peace and you the strength you will need.
Christine
Thank you
So very sorry to hear this Kevin. Prayers are with you and your Liz.
Hugs ,
Liz
Thank you.
So sad Mum has just started refusing food apart from cake I sat with her last night and she was sobbing as did not know what to do with herself as I posted a few days ago her legs just don’t seem to work even though you can see her trying to will them to weight loss again is a huge issue thoughts are will you and everyone we walk a heart breaking situation every day x x.
So sorry to hear this. My thoughts are with u, iam currently nursing mum, late stages of PSP. Xxx
My husband had PSP and he decided to stop eating, He always said he would go when he had had enough. He just refused, his body shut down and he had no pain. A peaceful end after only three days.
Every one who wanted had the opportunity to say goodbye.
He felt loved, I hope. He died at home, as he wished.
Its heartbreaking but so is the living with PSP
love from Jean x
My husband died two months ago after making the conscious decision to take control of his disease and his death. He had been eating well until that point, so he was in a state of good nutrition, which made it take a little longer. With no food or liquids it was two weeks before he died a very gentle death. During that time many dear friends were able to visit and spend time with him. He was conscious and aware until very near the end. While we never ate in front of him, after a few days if we were having a beverage we would dip his mouth-cleaning sponge swabs into coffee or wine or whatever he wanted. Giving liquids to drink will postpone the death. Without them it should take one to two weeks depending on the state of health.
I am so sorry you are going through this, and that your poor sister has had to suffer this miserable affliction. I know that if I was diagnosed I would make the same choice - probably a lot earlier.
Holding you both in prayers.
Dear Finoni,
Condolences on the death of your husband. We saw your post when he had just started refusing food. I'm sorry I didn't check in sooner. I hope you are doing ok in this tough time.
Hugs to you XXX
Anne G.
Thank you for asking, Anne. I am doing okay. Thanks to Hospice and many friends I was able to keep up a fairly normal life until the last few weeks of his life, so slotting back into it has helped enormously. Knowing that it was John’s choice and he is no longer suffering helps a lot. In so many ways my life is easier now, but harder as well obviously, without my best friend of 45 years. But of course that person has been slipping away for years and the grieving started back then.
Where are you on this challenging journey?
xxx finoni
I'm really not sure where we are: my best guess is "mid stage" of CBD as G still eats well, does not have choking or aspiration trouble and no other unrelated health complications. I would say 1st symptoms were 5 years ago. He can now just barely walk a very little, is weak, has lost 90% or more of his speech. Does not like going out or seeing others. Has lost cognitive capacity. Can't read. Sleeps a lot but not like those who are very close to the end.
But who ever knows?. Thanks for asking 
Hugs,
Anne G.
That actually sounds a lot like where my husband was. He had a good appetite, but choked on clear liquids quite often. It was the falling and fear of it that was the worst for him. He kept falling backwards onto the same shoulder over and over. His back was a mass of scars. He was in constant pain, and that and the humiliation and frustration finally wore him down. But from the beginning he always said he would know when he’d had enough, so we were all prepared.
A friend sent me a wonderful quote from Buddhism, about it being our obligation to help others live well, but also to help them die well.
🌷🌷🌷finoni
Your sister sounds a lot like my dad, he has been skipping least 1 meal a day for a few months now. The staff does ask ask him at every meal time if he wants to eat and sometimes he just says no. He has lost about 40 pounds now since he went into the nursing home last Sept.
The one thing dad has yet to turn down is a Reese's Peanut Butter cup and Coke-Cola, he still has his sweet tooth.
Ron
Pages I am so sorry to hear this. As others have said you need to make her feel loved now. It will help her so much, and it will help you too to know that she died feeling your love.
To all others who are going through the same thing I send my love to you all.
God bless you all and your loved ones.
Marie x x
The very same happened to my mum. It’s agony to experience and your sister is too young. My heart goes out to you all. Lots of hugs and love to you
Sorry to hear your sad news but it's good that your sister finally has a little control over this awful PSP.
I think my brother may be just a little way behind her. He has lost a lot if weight since his food has been pureed, although he still has his sweet tooth. Mum likes to give him a chocolate mousse when she visits as like you, she feels she needs to do something.
My thoughts are with you both.
Love and hugs.
Sue x
So so sorry,my husband was like this just the week before he died last year,sit with her talk about the good times,and tell her how much you love her,thoughts are with youxx
How very difficult it must be to watch your sister waste away. Although my husband has lost a lot of weight, he has not refused food yet, but he has asked if he will die if he does so he's thinking.
My heart goes out to you. May you find peace and acceptance with your sisters choice. All we can do is let them know how much we love them.
Hugs to you,
Liz
Sending you hugs pages it is so hard seeing someone you love suffering xxx
Thank you, allotmentartist.
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