My husband, 63 yrs, diagnosed two and a half years ago has chosen medically assisted death and will exercise this right soon. The only good that will come out of this tragedy are those in need of organ transplants. He has decided to be a donor and brain tissue will be sent to CurePSP at the Mayo Brain Research Centre in Florida. I have much respect for the BC Transplant team in Vancouver and to his doctors for their kindness.
Family and friends and I are very supportive of his decision as he is locked in a stiff and uncooperative body. He is experiencing more back and shoulder pain despite massage and physio treatments. I am shifting from the caregiver full time to pieces of the day where I can just be with him for the next few weeks.
This forum has been helpful. I haven’t posted much but do read the posts early morning when I can no longer sleep. Thanks to those who share their experiences.
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catherineann
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I don't blame him for taking that decision I only wish Ben could have that choice as he would definitely opt for it, he has made that clear all the way down this long and gruelling PSP road. I!m pleased that you have decided to relieve yourself of some of the care in order to be his wife again, you both deserve that special time together. I wish you both a happy and comforting last few weeks together. It's a bitter sweet decision that he has made and a brave one too.
A brave decision, Catherineann. Chris would have done so if it was allowed in UK. In the event he made his own decision to stop eating. Good to know he can also benefit others.
My thoughts are with you at this time. You can focus on him and the family.
Yes. I found it really hard, although we had always talked openly and were in agreement. Now I recognise that the defining moment for him was quality of life. It became clear that he could see little, communicate little, hearing bad and then food becoming a real problem. He didn't want the path of medical intervention. He would have opted for assisted suicide at that moment. He saw his loved ones and went. I was pleased that he had no pain and slipped away quickly.
Liz would have the same, but it is still not permitted here.
She struggles so much with the disabilities, cannot speak but tries to. Today something had upset her and it was hard to find out what. We got there in the end.
I understand that one oh, so well. I sometimes have to hold the tears back. I cannot imagine what it must feel like when someone we love so much says they want to end their suferring.
I just wish we had that option. I can see the want of it in her eyes.
My husband would have chosen this path too were it not illegal in the UK. He would have had to fly to Switzerland to do it. He wanted me to give him something and I had to explain I would end up in prison! It broke my heart that he couldn't do it here at home in a dignified way,p because that's what he wanted.
God bless you both. It won't be easy but looking at him suffering even more certainly wouldn't have been either. Enjoy your time with him. You are both brave in your different ways.
I don't blame you. However you have to be able to make the decision yourself. It might be good to put it into writing too. Just in case? Gosh it is so sad that people have to do this. I wish our MP's understood the desperation that people face. We will miss you so much you know? All your photo's and video's brought us magic. It is so unfair.
How are you doing at present? Anything else on your bucket list?
A brave and difficult decision. Enjoy your time together.
I am glad your husband will no longer have to endure the psychological and physicals pains of this disease. And good for both of you on the organ donation.
Oh Catherine, my heart aches for you. My husband has been saying this is what he wants to do when the time comes, and I have not heard him out because I am so afraid of this reality. I don’t even want him talking about it. I have so much respect for you and your bravery in this battle and decision. You have opened my eyes that I need to respect his feelings and begin having this discussion. You’re in my thoughts and prayers.
Dear Catherineann; I salute your strength in accepting your husband's wishes, and in being assertive yourself that you are to be his wife and not his caregiver at this time. I know there are no sufficient words at such a time as this, but you are being an amazing wife
Your husband is a very brave and selfless man who has found a way to bring a positive ending to his life, one that hopefully will give you strength in the time to come and benefit others who will find themselves facing this terrible disease. You are extremely fortunate to live in a part of the world that has seen that compassion is a good thing. I hope that your remaining time together is happy for you both and when the time comes you are able to look back with thanks and love. Ruth x
What a brave man, I wish that we had a choice in the U.K. maybe one day. Sending you both a big hug, enjoy you few weeks together xxxxx
You are a wonderful wife with such strength,it's takes tremendous amount of courage to stand by your husbands decision knowng the out come.I live in BC as well and I'm a firm beliver in the right to assisted death.Do hope your husband has a peaceful journey. Take care of yourself.
Hugs to you
I think you and your husband are very brave but think it is the right thing to do, I wish we could do this in the uk. My husband is not aware how bad this illness is as it progresses. I try to protect him from this as I’m sure he will get worse sooner. We do discuss All when he questions me when things happen ad I chose carefully how much further tell him. He can’t research on his laptop now or he would now more, just reads the hand book we got from PSPA. We take each day as it comes. I think we in the uk should get a petition to be able to end our lives when we have these terrible illnesses. It is so cruel to suffer in this way.
Thank you for sharing. Thinking of you both and may these remaining time be full of love & memories.
I echo what others have said about hoping one day that choice is made legal here in UK. Mum has registered to donate her brain also.
Much love x
Dearest Catherineann
I have type in my mind so many things to say to you that could possibly help you through this process.I could read your heart breaking in your post. Did a lot of what if.I was thinking that when it comes time for my husband to leave I think I want to recreate our hoilday in Mexico walking on the beach,rent a heat lamp and sounds of the wave slapping at the shore.
I wholeheartedly support you both. I’m in the UK where it is illegal and I am dreading the progression. No one should have to suffer the trauma these diseases cause, both to the sufferer and loved ones. We would do right by an animal in the situation. My husband and Iwould both do the same if allowed.
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