Just had to make the hardest decision of my life. We had a visit from Mary's consultant to discuss her treatment escalation plan and she asked whether Mary should have artificial feeding when she is no longer able to swallow. We decided that she should not have PEG or a nasal tube feeding and be allowed to die with dignity. Such intervention would only prolong her suffering from this despicable disease. I keep bursting into tears when I think of her starving to death. So sad.
Hard Decision: Just had to make the hardest... - PSP Association
Hard Decision
Written by
Willow_rob
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43 Replies
•
Thinking of you at this sad time, my husband didn’t want the peg, it’s a hard decision. Sending you a big hug. Yvonne x
Thank you
Hi Rob
We are nearing that stage too. Liz is very emaciated now. With her difficulties swallowing she refuses food a lot. She tells me she never feels hunger and some time she takes very little ensure a day. She has an Advanced Decision not to have a PEG and the GP has taken this onboard
I too get tearful when I think of her or see her in such a state, but I think feeling hungry drops of the wagon too. You might want to talk to an end of life care professional about this?
Tearful times Rob, my heart goes out to you both.
Best
Kevin
Thanks Kevin. The Consultant was very caring and wanted to take this decision for me but this is my responsibility. I shall have to speak with our sons when I can pluck up the strength.
Dear Kevin I I just want to send you and Liz a big hug
Jeanette x x
Hi Jeanette
Thank you. That's lovely and I will pass it on to Liz too.
I read some of your posts which I missed. I'm still playing catch up.
I will reply over there too.
Stay strong!
Hugs
Kevin
xx
And hugs from me too. I don’ t want a peg,it only prolongs the inevitable, especially if I am bed ridden,personal choice I suppose. Will be off next Friday to help with more research at Cambridge,another scan and umpteen tests. Wish I could get some feedback as to how I’m doing on all this but appreciate it has to be anonymous. Had result from last MRI and all was normal and no shrinkage of the brain compared to the one I had a year ago. Won’t see consultant to discuss till clinic in April so will find out then exactly what it means. Jayne x
Hi Jayne - just came across this post from a few months ago: Hope the April appointment was positive..!
XX. Anne G.
I am changing consultants so will have wait for an appointment. This new man worked with Professor Rowe as a registrar on the research projects at Cambridge and has now become a consultant so it makes sense to keep everything together. Hubby is going to help with research as a ‘control’. I’m going on my third project in a few weeks-all these tests are keeping my brain active! I’ll report back later. Jayne xx
Hi my husband was diagnosed with psp in January we are in Cambridge where my husband is under Dr Rowe and is also helping with research, do you live near Cambridge. Jill
I come down from Norwich and will be starting on the Prospect research on the 16 May. Jayne
My husband never wanted a peg either, although right at the end, when I was at the end of my tether, trying to get food into him, he agreed. But it was far too late. Three days later we had to make, what was the easiest decision I have ever made, withdraw everything from him. I promise, for all PSP faults and let's be honest there are many! The end is very peaceful and dignified. Steve didn't starve to death, more like faded away.
Sending big hug and much love at this very difficult time.
Lots of love
Anne
Thank you
• in reply toHeady
Dearest Ann, the same was true of my mom. There was a peace in the room that l had never experienced before. Sending you hugs... Granni B
I too was tortured by that but when Chris stopped eating completely he was calm and peaceful. He had no medication and slipped away. He was at home with me. It was not how I had feared.
It is a dreadful decision to have to make.
Love to you both, from Jean xx
Dear Rob
Such a difficult decision I know.
In October we finally made the decision to refuse the peg with mum's consultant as her ability to communicate was getting difficult and she told him she didn't want it so this is now on all her notes. Her gp wanted to do a mental capacity test in August before he would accept that was mum's wish. Well that was a joke because mum would need more than a 10 minute consultation to have got her words out to answer him. We were lucky that her consultant at the hospital had more sense. It sounds like you have a good one too.
Back in October my mum could eat and drink. Two weeks ago she had to go on thickeners for drinks as she was choking. Food is ok but changing every day to what she can manage and I just feel everything's racing ahead now too fast . Have we made the right decision? Scared of what's going to happen and thoughts of her dying of starvation like you bring me to tears but then I have to believe this is right for mum it's what she wants.
I hope that your sons will understand their mum's wishes and support you at this very difficult time.
Sending you and Mary lots of love
Lynda x
It's a very hard decision and everyone has different feelings about it. Since your wife made the decision the best thing you can do is honor her wishes. Dad made the same decision but he actually ate solid food, mechanically small texture/thickened liquids, till the last few days.
Ron
May I just add when one is nearing the end they don’t need food and just dabbing the mouth with a wet sponge will suffice. Your darling may just go to sleep as my dad did.....personally I think you’ve made the right decision but I seriously appreciate a very hard decision. Sending hugs x
John declined a peg last year but the Doctor at Cambridge kept trying to persuade him to have one in due course and said she will review it at the next visit. I don't see any advantage in prolonging his life with this horrible disease. He has been on thickeners for a few months now and is also now having problems with food x
Thank you, this was how I rationalised my decision. Thankfully my eldest son has accepted this, I have yet to speak with my youngest but I am confident that he will too.
I so agree with you. Thickeners even-ugh! Saw what they were like with hubby ‘s dad,made him choke even more after hospitalisation for collapsed lung. Jayne
Dear Rob it is heartbreaking I'm sad that we have to make such a decision but for me as soon as I found out but I had got CBD I said I don't want to be artificially fed my poor husband what is appalled and he said how can you say that and I said I know it was coming it is that's way I can stop the suffering has to be done my husband doesn't talk about what's going on at home to anyone. I will talk to will listen they don't agree with that what I've got to say about my condition but they haven't got PSP or CBD so they don't understand what we have to go through not such as patients but the for patients but the cares as well send you and Mary big hug stay strong I'm brave Jeanette x x
Thank you, it is reassuring to get the patients perspective. Unfortunately Mary cannot communicate but she did express her wishes before the disease took hold. Rob
• in reply toWillow_rob
Dearest Rob,
Mary's Wishes... even though it is breaking your heart & spirit... knowing & remembering Mary's wishes is most important now. Hope your son's are being supportive & gentle with you both.
Sending gentle hugs... Granni B
Willow_rob• in reply to
The boys have both come to terms with our decision and support it, and me, fully. Bless you. Rob
Same here. People who are not involved in all this have no idea what life is like. Thinking of you. Jayne x
It was my fear that Ben would starve to death, having decided he didn't want a PEG fitted from day one. In fact he continued to eat small but regular meals until his body started to shut down. I was reassured by his GP that once this starts to happen he would no longer want or need food, this happened just a few days before he died and his death was dignified and peaceful. It seems to be that most people's experience are very similar when their loved one reach the end of their life. After such a struggle for the last few months of life it was a blessing that the end was actually not as distressing as I had imagined. Hope that helps.
Love Kate xxx
Thank you I have heard this but it's still hard to accept.
I fully appreciate what you are saying, I'm sure I felt exactly the same as you. It is truly amazing that when the time comes for your loved one and his/her have made to die at home you somehow muster up the strength to make those decisions according to your loved ones wishes, overriding your instinct to call in the medics at such a critical and personal time. It takes away the indecision if you know in advance and can help to create an atmosphere of love and support in their last hours. I can honestly say that Ben had a 'good' death surrounded by love and affection from his family. I hope that when my time comes it will be the same for me, fingers crossed.
Love Kate xx
Thank you. It makes it a bit easier and we shall plan a gentle passing for her. XX Rob
Such heart breaking decisions to make. Medical staff should ask this question early on in the disease giving chances for people to make these decisions. My husband - a doctor decided years ago and regularly reminds me he dies not want s peg. I know it will be hard but I have to respect his wishes. So reading of others experiences towards the end of life is really helpful- thank you to those who have shared.
Sending love and hugs to you Willow-Rob at this difficult time
Love Tippy
It's not that hard if their wishes have been expressed loud and clear Tippy, I would definitely have called an ambulance had Ben not been very clear of his wishes, so glad I didn't have to do that as it made his death so much more dignified and personal. By the way it was lovely to see you last Friday. I came away with a big smile on my face despite there being lots of sad stories, so uplifting in so many ways xxx
Hi, Tippy
You're right. Although Chris was really clear and never wavered and I agreed absolutely - when it was up to me to stop coaxing him - it was so-o-o hard.
Sorry to miss you last week.
love, Jean xx
We are thinking of you and Mary at this time, a real gut wrenching decision to make and you are doing the right thing not to prolong
this terrible disease,our hearts are with me at this sad time.
Peter and Kathy
The decisions we have to make for out partners are horrible. Les didn't want PEG feeding, yes it was hard to see him starve but I couldn't bear to attemp to change his mind. The anaesthetic needed would have exacerbated the PSP and it was pointless. I couldn't and didn't want to extend his misery.
I hated it as Les didn't smoke or drink. Food was his one pleasure and PSP took that from him. No matter how we try to understand it is just impossible to know what is right.
I wish there was some way to help you but the vile disease continues. I understand your tears and I have them running down my face now. There is no easy way to cope. You will though as there isn't any other way. I will be thinking of you.
Love and hugs
Pat xx
Thank you for your support. Rob
Hi this is such a stressful time for you but this happened to my mother who died in December after having Psp for ten years. One morning when I went to feed her I noticed her swollow had stopped, the District nurse came in and set up a syringe driver, this had medication in to cover any pain and anxiety, by the afternoon mum was in a lovely settled sleep, she never woke again even during care and died six days later, peacefully. It was lovely to see her calm peaceful face for the last six days, we also felt calm as there was no longer any struggle for her. I hope this is helpful for you.
Very thank you
My husband wanted a peg tube and has had one for 6 years. He has HHS’s his disease for 12 years( CBD). It is the choice of the patient, although it is hard for both either way. We have been blessed with time. He still insists on having it because he wants to continue to live. I ask him occasionally what his choice would continue to be. It has been hard because the health care providers ( some) quip that I am being selfish. ( as his wife). They don’t understand the struggle but him determined to do what he wants. Anyone else out there with a peg tube? I still believe it is a hard choice and must be made with both sides of the issue being discussed. God bless you both
No one should have to go through that. My heart weeps for you too 
Anne G.
Thank you for you compassion. Many people do not understand this struggle but it has made us( my husband and I ) even stronger, so for that I am grateful.
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