My husband decided today was the day to stop eating. He had reached out to his doctors for physician assisted euthanasia. Since PSP is a brain disease, they felt they wouldn't have the support of a medical board. We had talked about starting to limit his food intake, in essence to wean off of food. I felt that if he really was determined, he would understand that this wasn't an easy process. But then again, it wasn't my decision. It has always been his. I can only support the decision. We have hospice. The nurses are great at listening to my concerns while I care for him. And now he won't drink water. All in a day. He decided. Enough was enough for him. I have an idea of how rough these next few (or more) days will be. Years ago when my my mom had been diagnosed with end stage liver cancer, came home from the doctor's office and went to bed, refused to eat or drink anything and died within a week. I barely made it in from the airport. She apparently waited for me to get there so she could go and someone would be there for my father. I was astounded at her determination to go out as she wished. I am seeing this again. Stop the suffering. I wonder how is it we can ease the suffering of our beloved pets but we can't for our family. My hope is to just keep breathing, in and out and get through this for him.
Sad new day: My husband decided today was... - PSP Association
Sad new day
Wow. I feel for you. You are all very brave. My husband with PSP was approved for Physician Assisted Death. I was surprised but perhaps because it’s terminal they were lenient.
Then I started to panic at the idea of it. Since he is no longer verbal it probably won’t happen anyway. He wasn’t ready when he was approved about 9 months ago so we are just working our way through.
Good luck to you all.
So sorry..my sister just passed with a 'medical assisted death' here in Ontario after being approved by 2 Dr.s...she felt her voice going and while her mind was fine..she was assessed and approved..her worry was that she would be non-verbal ...thankfully she had a peaceful death and although I miss her terribly she took charge of her destiny....
I am also going through awful decisions and times. You are amazing . I can barely think, speak and eat. My voice and body shivers. Many on this sight understand and are here to support you. May this time be filled with peace for both you and your husband. We are here.
So sad, but my husband did the same 4 years ago. He had a PEG for about 10 months which was a life changer for the good but one day he decided he had had enough and indicated he didn’t want me to feed him or give drinks any more. The doctor made sure he knew what he was doing by saying, “ You do realise you will die within 2 weeks don’t you” and my husband’s thumb went up. I had discussed Dignitas with him early on in his illness but he said he wasn’t interested in assisted dying. It was the most peaceful 11 days we’d had in years. He was not in any pain, refused medication although the hospice had left morphine here if he required it but he indicated He didn’t. His bowels stopped working after about 4 days but his bladder was working until the end and as he had a convene, that caused no problem. I turned him, kept him clean and refreshed and sprayed his mouth with breath freshener to keep it moist without giving him water which he didn’t want. Family and friends came to talk to him and he knew what was going on and responded with thumbs up or down for 9 days. On the 10th day I felt he had gone in spirit although his heart was strong but there was no response, his muscles had relaxed. He was Cheyne-Stokes breathing, so on many occasions I thought he had gone, only for him to suddenly gasp and start breathing again and then on the evening of the 11th day it ended. In the morning I had held his hand and told him it was time to leave and I’d be OK and he wasn’t to worry about me.I’ve been with several people as they died and my darling’s death was the most peaceful of them all. My prayer is that your husband’s parting is peaceful and painless.
My thoughts are with you.
XxxX
My husband made the same decision. He was very clear and always said he would go when he was ready. He was having palliative care at home. He was weak and died after 3 days. He needed no pain relief and was calm and comfortable. Everyone came and said their goodbyes- he waited for our son to travel back from holiday. Then he quietly died. The hospice nurses were so loving and tender with him. It was a good end although I had always dreaded it. It felt important to allow him to control something at last.Love Jean xx
My husband stopped eating as well, wasn’t sure if his swallowing just went completely or if it was a conscious decision. The one thing I do know, as NannaB has already said, it was the most peaceful few days of our journey. Please, please let others do the physical caring now. You become his wife again, hold his hand, tell him you love him and it’s alright for him to let go. I still look back at those days with love laughter, tears and a certain calm feeling. It was an honour to be there. It has kept me going through the dark days that inevitably follow.
Sending very large hug, much love and loads of strength to get you through the next few days.
Lots of love
Anne
Sending hugs to you and your hubby during this journey... Granni B
My late wife want thru the same thing. but she did not feel any pain. Once she cut off the food and the water intake. She fell into a deep sleep after a few days. The Hospice team gave her morphine. I saw no signs that she was in any pain. You can go on for a few months with out food but once the water intake stopped. It only takes 10 to 14 days for the body to shut down. My Wife went out under her terms and I respected her decision. She stopped intake on Dec. 27th 2017 and passed on Jan 9th 2018. Good luck
My husband did the same thing nearly 3 years ago. I waited a few days after he stopped taking anything by mouth so I knew he was determined to go through with it before having the ‘children’ come home. While it was obviously a sad and difficult time, it was an opportunity for friends to visit him to say their goodbyes and good for the family to be together to support him in his decision. We never ate in front of him but as time went on, if we were having coffee or wine I would moisten his mouth swabs with whatever we were drinking.
It did take the full 14 days because he started in good health, but he was determined. From the time he learned of his diagnosis he had made it clear to the family that he would not see it through to a natural end, and he stuck it out a lot longer than I think I could have.
My thoughts are with you through this difficult time, Finoni
My sister just went through an 'assisted death' here in Canada where it is legal...she was assessed by 2 Dr.'s and found to be competent of making this decision ...she was ready to go..everything had been taken from her and her life was intolerable..and thankfully she could say enough was enough...only 10 people allowed at her funeral today but over 80 people signed in to the zoom link...sorry your husband is is unable to have this same permission...hugs❤
Hi Uscarol!Thank you for sharing your feelings and concerns.
I understand you.
A big hug and courage.
Luis
Thinking of you both, you are both very brave & strong. My Mum's swallow stopped and after a few days without drinking passed away peacefully. Those last few days were a special time & I get great comfort from them & knowing that I was able to support Mum die at home as she wished. I hope you find the same. xxx
Hugs and prayers.
May you be comforted by his decision to complete his journey and free himself and you from the struggles of this disease. Do what you can to care for yourself as you support him. Do you have family or friends to help comfort you as you support him? I hope peace comes quietly and soon. Hugs, Pat K
Thinking of you x
It's been a rough beginning. We are 3 days into no food. Only meds for pain, anxiety and such. He only takes enough water to get the meds down. Pretty soon we will transition to the comfort meds from hospice. We had a lesser equipped fill in caregiver for overnight for the past two nights which upped all of our anxiety to the stratosphere. I was so thrilled to see my regular one I almost jumped into her arms. What a blessing she is. Now to sleep.
Sorry to hear, hope things go more smoothly now. I can so identify with your thoughts on carers, a good one is worth more than their weight in gold. Keep strong. xxx
For everything there is a season, and a time for every matter under heaven: a time to be born and a time to die..My husband left his PSP riddled brain and body on Sunday morning softly. No more pain, no more falls, no more choking, surrounded by all his family. No more words needed to be spoken as all matters were done and all that was left was love.
8 days is all it took from the start of his plan of no food or water (5 days) with sublingual morphine, seroquel and lorazapam added intermittently until the finish. Shockingly peaceful, gratefully peaceful.
What I must do is how to figure out how to live in a world without him.
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