My wife was diagnosed with CBD three years ago. Last Tuesday decided that she wished to die and refused food, liquids and medication. I’m her full time caregiver I was distressed at this. I contacted the hospice and the GP for help. Has anyone else experienced a similar situation. Love to hear your comments & the outcome.
Refused food, liquid and medication - PSP Association
Refused food, liquid and medication
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Amth_1948
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I'm so sorry you are in this situation. My husband also reached the same conclusion. We had talked about it previously and it was hard but I agreed with him. His quality of life was poor.
He was at home and the palliative care team were wonderful. He had no pain and had a peaceful passing. All the family was able to say goodbye . He was surrounded by love.
It was so hard to allow it but it was the right thing for him.
I am thinking of you. It's so painful. Big hug from Jean xx
Jean thank you for your valued reply. Can I ask you how old your late husbands age at passing? My wife is 68.
Chris was nearly 84. I know it changes one's attitude. When Chris was diagnosed he was nearly 80. I said to the neurologist that being told you will die in a few years is not a shock when you are 80. How you die is a worry.
We were so fortunate to have good retirement years and that makes such difference I know. Although I miss him dreadfully we made lots of memories.
Your situation is heartbreaking. xxx
I commend you on being so strong as to even write those words- let alone respect your wife’s decision. Oh wow- that’s pure love on both your parts. Do I dare say what a lucky woman your wife is. I mean, to be in the position she’s in she’s lucky to have a loving husband/partner.
I am so sorry to hear this. It is very distressing but I wonder if it not a will not to live any longer but that everything just becomes just too much of an effort. My husband certainly reached this stage. All you can do is let your wife know that you love her and make her think that you understand even if you don't. My loving thoughts are with you xxx
My husband always said that if he became so incapacitated he would like to die . Now he can’t do anything for himself and said two days ago he wants to kill himself ..... the only way left for him to do that is as your wife is doing . He hasn’t decided to yet , today is his 75 birthday ,but there’s no pleasure in his eyes ... he thinks he might die today .
I wish you both strength through this . My mother chose this way . It’s very hard to stand by and allow it , but try to .... it’s what she has chosen . It’s not you she’s choosing to leave but rather it’s the illness
I'm so sorry to read this and feel for you. Chris had decided he didn't want a PEG and after some recurring chest infections stopped eating then a few days later, he stopped taking fluids. He was fully aware of the consequences, but could no longer communicate, but he had obviously had enough. We were supported by our wonderful GP, district nurses and a team of loving carers and he died peacefully the day after boxing day.
Just tell her you love her and hold her when you can. She will then be free of this devastating illness.
Thank you for your kind words, it’s very helpful. I know I’m not alone. It’s very hard to see a love one go through this awful illness. I’m coming to terms with my wishes, it’s hard.
It’s grateful that I’m not alone and people are so kind. It’s not situation I Wouldn’t wish On anyone however I’m coming to terms with my Wife’s wishes. My wife is going into a hospice this coming week. Lol Alex
Dear Alex, You are certainly not alone in having to go through this. We all have in some way or other. My husband at the end just wasn't capable of eating or drinking. Was never sure if it was a conscious decision, but I do know he had given up the fight. Once I accepted this was the end, everything calmed down. The professionals actually knew how to deal with Steve and how to help me. The most important thing for you to do now, is be a husband again. Tell your wife you love her, hold her and give her permission to leave you. Let others do the physical caring, anybody can do that, only you can show her love. I spent the last three days of Steve's life being his wife again. The most precious time in my whole relationship with him, I will treasure it forever.
Sending very large hug and much love
Lots of love
Anne
Hi there, So sorry to hear about your wife’s decision, I share your pain.
I’m currently sat in the hospice with my dad as he has made exactly the same decision. My father is 71 and was diagnosed with CBD 2 years ago. He was admitted to hospital for a UTI during COVID and stayed there for 4 weeks. During this time he lost his ability to walk as he wasn’t given the opportunity to get out of bed.
He came home from hospital and had carers 4 times a day and his 3 children were there to support him 24/7. Whilst he did make progress with the physio he started having more Trouble with his left hand and the physio thought it would take him 4-6 months to walk again - assuming is hand was ok so he could use it to pull himself up.
My dad took the decision to stop eating and drinking as he didn’t think his quality of life would get any better. He had warned us a year or so ago when the time come this would be the route he took but none of us thought/hoped it would be so soon.
He liked the local hospice and was an outpatient here previously. the staff are incredibly kind but his journey has not been as easy as he would have hoped. On average people last 3-4 days without water. My dad has lasted 10 so far although did have some water 2-3 days in as it was ridiculously hot in the UK and he was increasingly uncomfortable. Doctor later advised would drink no more than 200ml a day if not looking to prolong life.
As a family we respected his decision as he didn’t want to be bedbound for years, with dementia. That isn’t a life he wanted.
We are hoping my dad’s journey ends soon and he can be a peace.
I wish you all the very best and your wife a comfortable journey to peace.
Going through something similar at the moment..my mum cries all the time and the past week we have heard those words too...shes on lexepro past 6 mo ths but defi ately needs something ..its a horrible disease..each day is a different predicament with mum...its heartbreaking
Hi Amth, so sorry you are at this difficult stage. My husband took an infection and lost his swallow. He didn't want peg fed however he wasn't suitable for one, so the decision was taken out of his hands.
I then let the professionals take over the role of caring and I became his wife again. The antibiotics and fluid drips were withdrawn after a week and it's
hard to imagine, but we then had the loveliest 12 days with him, recalling lots of happy, funny memories and telling him how much we loved him. He even managed to tell us he loved us too. A few close friends and ex colleagues visited and recalled their times together. W was in no pain and when we realised the end was near, I stayed that night and lay on the bed beside him. He passed away peacefully in his sleep, knowing I was there and how much he was loved.
It's hard losing the one you love, but when you know they will leave this world knowing they were very special and loved very much and also how they made you feel special and loved, it helps in the difficult days ahead.
Thinking of you both.
Lots of love, Nanny857xx
I too was diagnosed with CBD three years ago. I’m at the stage where things are deteriorating a little bit more each day. When you can no longer look after yourself ( I now have a carer once a day,cleaner and gardener)or do all the things you once enjoyed you wonder what it’s all about. My husband does his best to hide what he feels watching me deteriorate ,but it’s hard. If Switzerland was an option I’d take it. But with Covid and the fact that he might go to prison it’s not an option. I know what is in store,so believe me your wife is being brave in her decision. I dread the day I can’t get around on my own and we have a wheelchair as I can’t walk very far now let alone line dance like I used to! My thoughts are with you both as you battle this horrendous disease and hope that you will both soon find some peace.Jaynex
Jaynex
Thank you for your reply. My wife too have all the above symptoms you’re experiencing. My sons, my wife & I’ve discussed Dignitas. My wife is happy go to Switzerland to end her life. We've registered my wife with Dignitas.
I too was concerned about being charged with aiding a love one to take their life. I’ve spoken to a charity that deals with this Issue and their view is, people who’ve taken a love one to Dignitas on their return have been interviewed under caution but not charged.
Are you in the UK? We live in Kent.
I too hope you find peace.
Alex
I am in Norfolk. Which charity did you speak to? I have a DNR in place as I had a heart attack 2 years before diagnosis. Knowing what I know now,it would have been better to let me be ,but the care I received was fantastic,although I’m suspicious of the cocktail of drugs they put me on.Was Dignitas expensive to register?Jayne
Jayne
Dignitas cost about £280.00 thereafter £80 annually. Dignitas gives a lot of support. The charity that I spoke to was Compassion in dying. The charity don’t condone helping people to take their lives however speaking off the record. It’s a very difficult subject.
Alex
Alex,Thanks for this. Worth thinking about,though we should have a system here in the U.K. to help people like us who see no future and not have to go abroad from loved ones. Jayne
Jayne
I agree. It would be long the UK will bring into force, may be in the next decade or so.
People are deluded in thinking that we’re a Christian country. Once the generation has gone then it will change.
You take care.
Lots love
Alex
My hubby passed from CBD last year, he had just turned 48 years old!!
He was non verbal for 2 years and was also peg fed! As hard as it is for you to let go, it is your wife’s decision and the most selfless thing you can do for her is to accept that..
There are no true goodbyes as long as someone is always in your heart!
Thank you for your kind words. Just the thought of losing my wife is very hard but I’ve to look at her wishes. She doesn’t want to suffer and be reliant on me for all her needs. She’s slowly losing her speech and movement. We’ve Registered with Dignitas, this is an option. It’s so hard.
Alex
I'm so sorry you lost your husband at such a young age! How long did he have CBD? How did he tolerate the peg feeding? Was he bed bound? I'm sorry for so many questions... but my husband Kent, was diagnosed at age 56 with CBD in 2015. He lost his ability to communicate and feed himself very early after diagnosis. His speech therapist recommended peg feeding 2 years ago. I've resisted the peg tube since Kent enjoys eating and hasn't had any trouble swallowing/choking etc., he just just eats his food very slowly. Recently though, and about 2-3 times a week, he seems to forget how to swallow and the food just sits at the front of his mouth. His dystonia causes his head to drop forward, with his chin resting on his chest (this makes it hard for me to feed him, but does help prevent choking) Kent isn't bed bound yet, but has very limited mobility. With the help of my brother-in-law, we put a gait belt on him and have him walk from the hospital bed to the couch where he naps and watches TV. Kent still has the will to live and wants to be here. He was never opposed to the peg tube, I'm just not sure of the risks and benefits of even trying it. Could you give me a little insight as to how it went with your husband? Any information would be very appreciated.
My guy made the same decision after 6 years with PSP. He could no longer speak, but he made his wishes, which we had not discussed, perfectly clear. He lasted about 10 days. I gave him liquid morphine by mouth under the hospice order, when I though he was in pain. He would only accept it after I assured him that it was not to keep him alive. He refused water, but would take a rare ice chip.The one thing that I know that helped was when the music therapist came and played the hammer dulcimer for an hour. His muscles, which had been clenched and twisted, relaxed and stayed soft for the next two days until he died. I am sorry you are going through this, but I do admire the courage it takes to make that choice - and to be the one helping. It's hard, but it's right.
Thank you so much for your kind thoughts. I very much appreciate all the replies I’ve had. All sending the same message. Its very hard to see a love one suffer. My wife was a nurse and she knows what’s in store and she doesn’t want to be burden to the family. I’ve to come to terms with the thought that one day she’ll not be here. In the meantime I’ll make her life as comfortable as possible.
I hope you are all doing okay! Just read your post now. It’s so hard but at least she is able to express her wants still and have that independence of thought- even if it is incredibly distressing 
It’s never an easy situation. My situation is different but my dad has been in hospital a month and is refusing to eat much food now. X
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