Im sorry I haven’t posted in a while. Things have been difficult physically. The body is a long way from the condition it’ll be in if I let this go on, but I’m done now. There is too little joy left and I’ve always said that quality of life would be my indicator of when it is time to die peacefully.
I will stop eating and drinking Monday, in a hospice program that lets me end my life (by starvation and thirst) without calling it suicide. We don’t know how long the process will take but my hunch is up to 2 weeks, with the last of that time in some level of sleep.
All of you should know I’ve been fighting to get into hospice because my diagnosis of “probable PSP,” a condition that can’t be confirmed without an autopsy, isn’t solid enough for local hospice admission, even with all my symptoms. In fact I’m not yet admitted. I may be required to do this on my own for as many as 5 days before they will admit me. I’m being reevaluated Tuesday. I’m angry about our (lack of) a right to die as we wish in this country, but I’m trying let that anger go — I’ve got other things to spend my time on.
I’m so sorry for the pain my death causes, but there’s a trainload of increasingly awful symptoms barreling down the track towards me.
What I know is this disorder has already taken away my ability to stand unassisted, to take a walk in the woods, to meditate, to taste Girl Scout thin mint cookies without tasting a phantom splash of Formula 409 too, to cook, to create art, to fix leaky pipes or paint a wall with my own hands, to travel, to sing, to eat a great rare steak without it first being cut into small pieces, to chew, to swallow without choking, to focus clearly through both eyes at the same time, to open my eyes outside on bright sunny days, to know when I need to pee and to get out of bed without a struggle. My lips are numb and my tongue has felt badly scorched, as if I drank a whole pot of very hot tea, for almost a year. I can’t lift even a bed pillow anymore. The bed MUST be made with the ends of the flat sheet and the blanket not laying on top of the pillows because I can’t lift them to get in. Last week the end of my thumb went numb, and I probably will lose the use of the whole hand if I hang around. The one finger I can still type with is on that hand.
I expect to lose my ability to clearly speak at all in the next 4-6 weeks.
Eventually I’ll lose everything.
I live in assisted living here at Canterfield in Florida and I can hear many of you saying “Just accept help.” I have and do so increasingly. They have kept me safe and entertained and made my meals for me for several months, but measuring the necessity of increasing daily help against the decreasing joy is no longer adding up.
Intellectually my spirit, the essential Kyle, is still mostly in here, trapped inside the failing body. I think of spirit and body as distinct and separate pieces of me. I still talk at the same rate and tone I used to… in my head.I dream of walking and when I wake up in the morning, before I’m really awake, I’m ready to jump up and start my day.
It’s time to let go. I had what’s called an “end of life” dream in hospice-speak, and I know I’ll have all my pieces and parts working just fine when I get to the next stop on this journey.
My incredible daughter Claire, my sisters, my brother, my cousin, nieces, nephews, the babies here now and those to come, the domino dames, the lunch table ladies, my ex, my co-journeyers with such loving support on this site and my healthcare providers, I thank you for walking this journey with me. It hasn’t gone perfectly but nothing ever does, and I’m grateful to you all. Claire, I love you thiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiis big.
My cremains (the leftovers, I call them) are going to be sent up 100,000 feet over the U.K. to the sliver of space between the blue atmosphere and the black of deep space itself and be released. I’ll travel on the wind, see the whole world. I’ll send you a video. Really, there’ll be a video of the release. Well, Claire will post a link to the video.
If you need to visit, grab a blanket, lay on the ground and just look up.
Love you all—
Kyle
Written by
Kayelless
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I feel very moved to read this. In all your posts on here you have been clear about your wishes and I admire you following them through. From what I have read, this choice is more widely supported in USA than here in the UK.
I will think of you when I am looking at the skyxx
I'm humbled by your clarity and courage, and can totally understand your wish to 'fly free'. I'm sure my husband would have appreciated the option (at least!) to deal with PSP on his own terms. I will be holding you in my thoughts over the next few weeks and send you so much peace and joy. Journey well x
Such a lovely post (if that's the right word to use) my thoughts are with you. I lost my husband last month and he died at home, crumpled on the floor, with me by his side. He had fallen out of bed and wasn't able to get him back in. I think he knew he was going and had tried to come and get me.
He too had lost the ability to swallow and was fed by a feeding tube, as decided early on in the process of PSP. He too loved cooking and art. He'd been a carpenter and enjoyed tinkering in his shed making all sorts. This was taken away from him together with being able to walk unaided and sitting in the sunshine.
It's almost as if he'd read your post and just given up.
He's now free from PSP and we'll all miss him so much.
Sharon, I’ve never seen this as “giving up.” For me it’s giving in to the nature of life. It’s giving me lots of opportunities to look back and laugh with people who are surprising me by coming to visit.
what an amazing brave lady you sound. Fly high Kayelless, Have always said it is about quality of life. Will think of you & your amazing post always. Joy
Hi Kyle, I am lost for words after reading your account. So few sufferers from PSP have chronicled their feelings & experiences. I, like many others with their spouses, witnessed the slow progression of my wife (PSP), who undoubtedly would have thought similar to you had she been able to type or speak. She became locked in - hard on her and me. In the light of our experience, I fully understand you not wishing to live on further. I will be thinking of you on your journey, which I do pray will be as you wish.🙏
I admire your bravery and appreciate you sharing your thoughts my heart is open to you and I will think of you everyday in the next few weeks I am relieved your psp journey is coming to an end be in peace and share your thoughts so much love from the bottom of heart to you and all of your family and support group ❤️
Oh... but there is. I'm negotiations to be the new Heavenly supplier of ice cream - Definitely Decadent–Vanilla base, chocolate syrup, caramel sauce, brownie crumble, butterscotch topping, and white chocolate chunks seems to be a favorite.
What a great posting. My thoughts and prayers will be with you in the coming days. I am the primary caregiver for my wife. After reading your post, I am hoping she can maintain the poise and grace that you have exhibited here.
Thank you for sharing this. By the time my lovely man made the decision he was unable to articulate much except his determination. I feel you have expressed what he might have said.
I grieve for you and admire you. I grieve for your family. Love and courage and peace to you all.
I echo easterncedar when they refer to the marvel that is your your ability and willingness to articulate this uniquely awful experience. I longed to know what my husband was experiencing but he just could not express it in words. But I saw it in his eyes. You have helped so many people with your courageous truth telling. That is invaluable work.
Be free again. Be whole again. And know that you are loved and admired. Thank you.
😍😍😍😍😍😍. I take care of my sister...79 years old. She suffers from PSP-P since 63 years old. I was the observer of 16 years of progressive deterioration. I understand your decision. You are made all your best. It's enough! Big Hug
you don’t need to be brave as me, just be you. You will know when it’s time. This is by far the hardest path of this process, the waiting. I’m so grateful to have supportive messages from so many people.
Dear Kyle, As were the comments of so many others, I was moved to tears while trying to read your words to my husband. I`m so sorry for how you`ve suffered. What a gift to be able to share your beautifully expressed thoughts that so echo what he`s tried to express since his cbd diagnosis in 2018. Once we learned about the ugly progression to come we held on to the idea of VSED, Voluntary Stopping Eating and Drinking. When I read the post from you this morning I was overcome with both sadness for you but also thankfulness because we just recently went on to hospice to enable Tom to more easily escape that feeling of being trapped in his body. In preparation he has been able to share his plan last week with our two sons and his four sisters and they understand his desire to let go. It will be his choice when he begins to reject food and then water and I will continue to support whatever he decides. I tell him I`ll be o.k. but in truth I can`t fathom life without him, my husband of 56 years. My Vietnam vet of so many years ago who was sprayed with Agent Orange. Once again, I thank you for your words that impact so many who have read and will continue to read them. God bless you, Kyle.
thank you for your kind words. My best to you both as you ride this train, too. I’m on day 4 and although I’m hungry and thirsty naturally, I’ve found out sugar-free lollipops can help my need for flavor with no nutrition or moisture added. Yummy! I’m using Biotene mouth moisturizer spray for my mouth and lip balm, and I use moisturizing eye drops, and keep myself occupied so as to not feel hungry/thirsty. My sister visited today and had a glass of water while we talked. It had no effect on me, which is good to know.
Small doses, 1/4mg, of Ativan, can distract me, too.
Thank you so much for sharing this. I’m so happy you’ve found peace with your journey and have been able to take control of the wheel. Wishing you much love, strength and comfort. ❤️
The most articulate statement of the reason we all need the right to end our physical life on our terms I have ever encountered. I hope the next few weeks are peaceful for you and a release from this physical plane which has become unjoyful for you. Maybe there really is a "rainbow bridge" for all of us and our loved ones. Here's to hoping it is true!
Thank you for sharing your thoughts and feelings. It took me a while to be able to read it all but I’m grateful and respect your thoughts of quality over quantity. Thank youxx
Great respect and virtual hugs coming your way. If it were me rather than my mother with this terrible disease I would definitely be thinking the same way. I hope this part of the journey is easy on you and you drift away with no pain. Best wishes.
Morning of day 6. My kidneys aching low-level. I’m using Biotene, lipbam and eye drops more often. Last scheduled visitor today then since I’m already in bed and tired I’ll see what comes.
I’ve started looking at my mind and body as separate units. It really helps me distance my thoughts from discomfort, which is mostly from the dryness of my mouth. Down to sugar free lollipops for strong flavor with no moisture.
Gargled with Diet Coke and spit it out. Heavenly! They better have Coke where I’m going or I’m going to complain to the manager!😛😇
Grateful for the support you’ve given. Love you all.
Dear Kyle, I haven`t had a chance to search for how you`re doing until now, although I was able to read your reply to me and was thankful for your idea of sugar free lollypops! I think of you so often and was glad to see your update. You are leaving a legacy for fellow suffers who choose to follow in your footsteps. I will keep you in my prayers and send you love and hope for a peaceful end to all your pain and struggles. You will not be forgotten. ❤️ Wendy
What a courageous decision. May all those happy memories offer you strength. Will look out for you in the heavenly sky over the UK when the time comes.
Dear Kyle, I am overwhelmed with how brave you are. Thank you for sharing your journey with us. Wishing you peace and love. Thinking about you. P.S. I know what you mean about Diet Coke.
brave, touching, philosophical….. what an amazing read. I totally understand that you can no longer accept the lack of quality in your life…. And applaud you for making decisions that are right for you! Your journey on earth is ending but I hope you fly high and free into the stars and into the light of love of those gone before…..❤️
I know of another person who chose vsed voluntary stop eating and drinking because of alzheimers. Please post as you can. I will hold you close in my prayers 🙏 ❤
Yup, one brave lady but I do not doubt that you are making the right decision....just make sure you come back to become a world leader and save our sorry Earth!
We'll be looking up at you from East Sussex, UK.
Sending you love. I am sure the gods will look out for you.
Thankyou so much for sharing your thoughts and feelings about your fantastic new journey. I am sure you have helped many people on here , me included (I have MSA). Much of what you say is familiar to me personally, life's pleasures are diminishing as the disease progresses and just coping with the multiple symptoms can literally take every hour of the day sometimes.
Although I have lost many of the functions you mention I still have taste and smell OK and as the wine rack is nearly full it may well be a while before I book a ticket for the same fantastic final journey. So I wish you luck on your trip & sweet dreams. BCNU L8R.
The time when I could pull a cork out of a wine bottle is now long past, yet another task delegated to others. Screw tops are a possible with the use of something out of the tool box like a pipe wrench, provided someone gets the toolbox for me.
I presume by hard cider you mean alcoholic not the (ab)normal USA concept of calling a non alcoholic drink "cider". Here in the UK all cider is, quite rightly, alcoholic my favourite being a locally produced strong one, about 8%.
Do keep posting your daily updates, there's lots of us here thinking of you.
hello from a very rainy Scotland, I have read your post with tears in my eyes, but I get everything that you say, my husband has Psp, diagnosed 5 years ago and really getting towards the end, as this horrible disease strips him of everything. Totally support your decision and send love and hugs as your journey comes to an end. Pxxx
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It's been two weeks. A new year starts tomorrow.
How can I help my wife eat independently again?
Choking after drinking tea
Letting drinks dribble out
Drinking alcohol and PSP 
