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PSP Association
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Date decided

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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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.

Love and hugs

Kate xxx

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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.

A big hug from me.

love from Jean xx

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Hi Jean

My Liz is doing that to some degree. Its hard to watch, though I try to support her in it.

Hugs to you

Kevin

xx

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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.

Its a worry , isn't it ?

Hugs to you both, Jean xx

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Oh, Jean

It sounds wonderful, but still the loss.

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.

Hugs to you

You are both remarkable.

Kevin

xx

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Thats the stage I found so upsetting. He was finally not able to make me understand. I now think he was trying to say he'd had enough.

xxx

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"He was finally not able to make me understand."

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.

xxx

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I live in London, Kevin. He just refused intervention. He was home and I said he wasn't going into hospital. He made it really clear to the GP.

xxx

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Sorry Jean

I'm crossing wires here. I thought you had opted for Voluntary Euthanasia.

Yes, that it Liz's plan. Should she become ill in a life hreatenning way no meds or treatment to be given.

She too is refusing food a lot now.

Sorry to have been confused.

xx

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Thats ok. We would have welcomed official euthanasia, as it would have given Chris peace of mind.

Its such a difficult stage you are at now.

xxx

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Yes, as you can tell I am a little out of it.

But, this reading a novel to her whilst holding hands is great for both of us.

I think dear Liz is a little frightened. So this brings us close and that seems to help.

xx

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This is really critical to add to your memories.

Treasure every moment.

xxx

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Wise words and oh yes

xxx

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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.

Big hugs to you both.

Marie x

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Brave desicion. My thoughts are with you both.

Sending big hug and much love

Lots of love

Anne

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I have asked my sister to take me to Switzerland when I tell her I have had enough............. She has promised me she will.

I still hope that assisted dying might come to the UK one day.

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Patrick

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?

Big hugs to you Patrick.

Marie x

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I believe you also have to be able to drink the cocktail in two minutes for it to work. I did see a TV show about it. Can’t find it online.

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Hi Patrick

Sending my deep respect for your brave decision.

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What country do u live in

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We live in Canada. It became legal in 2016.

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Catherineann,

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.

Take care.

Dick

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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.

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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 :-)

Hugs and support to you XXX

Anne G.

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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

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Thank you Ruth. He is and always has been a very loving and caring man. I am very proud of him.

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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

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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

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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.

My thoughts are with you.

Jeanie70

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Lots of love and peace to you both . Xxxx

Jude

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Dear Catherineanne,

Thanks for sharing this with us. It is such a hard and stark choice. My heart goes out to you, your husband and your family.

Love and Peace, Sarah

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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

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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.

Thinking about you.

Hugs

Deidre (Dee in BC )

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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.

Stay strong!

Jaynexx

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Let's face it, in the UK, you would be locked up if you kept an animal alive,in the same state.

Lots of love

Anne

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I recall reading that medically assisted death had been approved in Canada but was shocked that the first case was someone with PSP.

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No, his is not the first in Canada. There have been several since the law went into effect in 2016.

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Sorry you misunderstood. The first was a Gerry Brouwer.

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I had no idea. Thank you for letting me know.

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Hi catherineann

A brave decision which I respect deeply.

I wish you both well on this new part of your journey.

Warmly to you both

Kevin

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