Hello everyone, how many times have I hoped to wake up from a bad nightmare .... too many.
I would like to talk about us, those who live this disease as a reflex, those who feel a bit selfish and would like to have a normal life, those who would like to have the same person they married next to them, those who stop thinking at least for an hour a day, those who cry watching a film just because two people hug each other......
I think that a part of us dies slowly together with the person we love. Inside us the struggle is endless, one part continues undaunted like a tank, strong as a block of granite while the other would like to close its eyes and let go.
How exhausting is this disease. after all this we stop to think that we will survive, but the person we love will not. maybe it would be better not to know so at least we can live the best of everything without harmful thoughts 24 hours a day. No one can understand what we are going through and sometimes the compassion of others hurts more than the illness itself. The anger that invades us every time we find ignorance and incompetence on the part of those who should be helping us. In the end we are alone, with our thoughts, sorrows, anger, discomfort, but we must keep it all inside and show off a big smile to give strength to those who suffer this disease.
I'm crying as I write, because I don't know what to do, because I'm impotent, perhaps the greatest sin is to love so much and not be able to save those you love.
Sorry for the outburst,
a hug to all
anna
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I have just read your post and I relate to what you have said it is exactly how I feel at times ,I just get overwhelmed and my heart brakes for when I look at my husband for I know some where inside is the lovely man I married years ago ,I think of the plans and dreams we made for retirement and the sorrow for what we both have lost, but yes we have to keep it inside and present a happy and smiling face. A big hug to you Pamela.
Well said. It has been 3 and half years since I lost my wife to PSP. I miss her everyday. Hang in there all of us who have lost a loved one felt the same way. It is a hard road to go down .Hold your loved one everyday while they ae still here.
AnnaYou expressed so clearly how we all feel about PSP.
I lost my husband 18 months ago and have recently started seeing a counsellor. Like the duracell battery I kept on keeping on but now I'm running on empty! Covid lockdowns were the final straw. The desolation is undescribable despite being supported by close friends and my family from afar. We had been together since 1964, married in 1966 and had enjoyed ten years of retirement together but the last four were increasingly affected by the effects of PSP. I know that I will get through this but do not know when, so just take each day at a time.
Beautifully written, from the heart. Everyone of us can relate to what you have said, unfortunately. Steve’s journey ended over 4 years ago now, but those feelings never end, no matter how much you try to move on.
This is the first time I have posted but I have read all the posts as I looked after my husband Steve who had PSP for 6 years. What you have written really touched me as this is the turmoil we live with on a daily basis .Steve died on the 23rd April 2021 so it is still raw and now I feel guilty for the times I snapped and wasn't as patient as I usually would be ,all I have to hold onto is he is no longer in pain .So if it gets tense walk a way for a minute to calm down and regroup remember its PSP that's the culprit not your loved one .I miss him so much so you give your loved one a big hug and remember they are still in there trapped by this horrible disease. Wishing you all the patience and understanding you will need 😘Jean
Don't blame yourself, Jean, for the occasional lapse. No one is perfect and most of us have those regrets. Try to give yourself credit for all the untold hours of loving care. Care for yourself now. Love and peace, Sarah
I wish I had the skill to write like that, you have encapsulated all the feelings that this awful disease generates. Thank you so much for putting into words what we all must feel. I send my strength and love to you and cry myself as I type this.
I rarely look into this site these days but just had to respond to your post.
I lost my husband to the hideous PSP nearly 3 years ago. Each and everyone on this forum will identify with what you are saying.
Maybe have a look at the link on anticipatory grief, which I hope might help you to understand what you are currently feeling - it is so very normal. If you can’t open the link just Google - Anticipatory Grief.
I’ve never yet worked out how I survived caring for my husband - we had 46 wonderful years together and had lots more plans. Today, the void in my life is as huge as ever but I do feel so very lucky to have had those years with him - why did I get to have so much happiness that some never know in a lifetime. I have 2 little granddaughters now so life moving forward still holds many joys.
I wish you well on your journey but please do seek help if it’s all getting too much, especially respite breaks for yourself and maybe some counselling to keep you afloat.
There is a famous syllogism: all men die, Socrates is a man, so Socrates will die. Syllogism is when from 2 obvious premises you sort a -less- obvious conclusion: all men die (we have no evidence of a person who never died); Socrates is a man (obvious); so Socrates soon or later will die. It’s only a problem of timing but we all will die. Soon or later.
Yes, this is a great post I had to respond to say thank you. Most of us feel the same way.It's sad when your loved ones get a disease and you can only watch them fade away with no cure. We feel your pain.
You have expressed everything I felt as I was going through my husband’s CBD journey with him. He’s been gone about a year and a half now. I miss him dearly, but do not miss being on edge every day with the balancing act of working full time and caring for him all of the hours I was not working. Watching his rapid changing from the man I married to a shell of his former self. I know it’s not how he planned out his life either. At the beginning of his diagnosis he would just stop and shake his head. I’d ask him what he was thinking about. He said he was trying to wrap his head around how this happened. Questioning if he had done something that been the catalyst to cause his disease. And what could I tell him? They don’t know the cause, so they can’t find a cure.
Thank you for sharing your familiar story. It’s comforting to know I was not the only one.
Hi , I was diagnosed with CBD and you said your husband had it. Just wondered how his progression went. It took 2 years and 3 neurologists to get a diagnosis my left side is effected I’m still walking and doing some things I know each person is different but just wondered about your husband and that’s the other thing no cure and each person is different. Thank you
Hey Mixee! Looking back, my husband probably had the beginnings of it years prior to diagnosis. He had his own lawn service and he’d wake up every day ready to take on the world. He loved his work and loved his clients. Then in 2015 he started changing. Two raindrops in the sky and he was ready to stay home for the day. I remember asking him if he was having job burn out. He said he didn’t know...maybe. NOT like him. But I didn’t think too much more about it. If I worked outside in 95 degree weather I’d have burned out long before!
Then he started having problems with word finding. We started having to guess what he was trying to tell us. I made him go get a physical. He came home and I asked him what the doctor said. She said he looked great. I asked about the speech issues. He never mentioned it to her. 😡
Soooooo, 2016 rolls around. Speech is worse. He’s tired all the time. Comes home from work, eats dinner, showers and settles in for Netflix on his computer all evening. If we went anywhere, he usually drove us in my truck. It’s a stick shift. I finally refused to let him drive anymore because I spent half of our trip yelling for him to shift! It’s like he forgot how to coordinate the gas, clutch, and shifting. Made him go get another physical for that year. I went with him! At this time, he wasn’t bad—but something wasn’t right. Doctor gave him an in house dementia test. He failed. Referred us to a neurologist. They sent him for labs, MRI. Failed his in house dementia test there too. MRI was okay. Bloodwork showed low B12. Started giving him B12 injections. Referred him for neuro psych testing for the dementia. Good old USA healthcare wanted $5000 for the testing. We couldn’t afford it with his insurance so he didn’t keep that appointment.
So 2017 rolls around. All of our friends are noticing something is not right with him. He’s having problems with his right arm. Never swung when he walked. It was always slightly bent. He was losing weight. We had a little group of friends we played music with. They were seeing him having trouble playing his upright bass. He couldn’t sing and play at the same time anymore. No coordination for it. His guitar he’d been playing since he was 12, he could no longer manage the rhythm strum. He stayed pretty quiet now, since his words were just not there.
The first half of 2017 was just craziness! His clients were calling complaining that he did a poor job on their lawn. He was pulling his truck through the bank drive thru and scraped the whole side of it. If we went out to eat, when it was his turn to order he’d always just point to a picture on the menu and say that was what he wanted. One day he’d blown out a tire, and I was at work getting text messages from his brother in Atlanta (6 hours away) saying George needed help. So I called his phone and some stranger answered it! A Good Samaritan saw he was in a befuddled state and used his phone and called anyone on the contact list he thought could help him. My son had to go rescue him.
It took me many months, but we got a second opinion from a different neurologist. Dr. Google told me it could be Parkinson’s disease. So I went in to his appointment with that prognosis in my head. The neurologist ran his battery of tests. Sent him for an MRI and labwork. Preliminary diagnosis was frontotemporal dementia, severe frontal release signs, primary progressive aphasia with Parkinsonian features. And he believed it to be PSP or CBD. Yes, I had to go home and research what all of that meant. And yes, I was horrified when I saw that it was only going to get worse—not better—just like the neurologist told me in his office.
He DID finally get to a neuropsychologist for 6 hours of testing. Her thoughts were probable CBD. He’d had to give up his lawn business. It wasn’t safe for him to drive anymore. He started physical therapy to help keep him from being a fall risk. Speech therapy...with his aphasia...let’s just say you could see the therapist was having a frustrating time with him.
Anyway, we limped along for the rest of 2017. In 2018, he started getting lost in our small house so he could not longer stay by himself. If I was at work, his mother watched him for me. In 2019 he started the year still mobile. Progressed to being double incontinent. Still losing weight even though he had a great appetite and was eating well. I quit sleeping in the same bed with him due to his “wing flapping” as I called it. He’d wake me up multiple times a night with his arms or legs shaking. That July he disappeared on me. I thought he was in bed sleeping. Nope. Didn’t know when he left the house. Ended up with 13 sheriff’s department cars in mine and my mother in law’s yards with all the deputies out looking for him. My in-laws had 50 acres of wooded land and he could have been anywhere. A deputy found him tucked in by a grove of trees...sitting there talking to “someone”. He was in surprisingly good shape for being out there in the Florida heat for many hours!
So that following week, his mother had come to our house to take him to hers for the day. She couldn’t wake him and panicked. I flew home from my job and we finally roused him enough so that I could take him to the ER. He checked out okay, but they kept him overnight for observation. The next day it was suggested to me to see about getting him in to hospice. Which we did by August. He declined rapidly after that. I believe he’d graduated to a hospital bed by November with very limited mobility. He slept many, many hours a day by that point. He was still eating—but you can’t eat if you’re sleeping—so he lost even more weight. After Christmas, he wasn’t responding as much. Whereas before, I’d come in the door from working and he’d turn his head and say hey, it got that he was either sleeping, or eyes fixed on the tv. No acknowledgment that I was even there. He passed away in January of 2020.
Sorry this story was so long. Just trying to give you an idea of what transpired. But you can tell George’s was a quick progression. His neurologist had told me when I asked how fast it would progress that if it started fast, it would continue that way. If it was a slow start—it would continue that way. And yes, everybody is different. Everybody has their own journey. I will keep you and your journey in my prayers!
Hi Cinnylou, thank you so much for that beautiful letter and your time to answer me. I will put your name in my notes and hope to keep in touch with you if you like. I am going to my girlfriends house for 10 days just trying to do things while I can. Thank you again ❤️
Yes, keep in touch. And if you have anymore questions regarding my husband’s journey, I’m happy to share what he/we went through. I know this site helped me kind of prepare for what was coming down the pike for us. Who knows better than those who’ve gone before? A wealth of information for diseases that no one else has ever heard of.
Anna, you`ve touched my heart. So eloquently written and speaking for all of us who have cared for someone we love.x
Anna, you put down in words exactly what it feels like to experience PSP with a partner. You cried as you wrote it; I cried as I read it. I will be sharing your beautiful post with our children. Thank you.
Hi Anna,Wow.... All I can say is wow. Every word you said resonates so much. I've never been sure who has it worse... the person we love dealing with the disease and the slow progression, or the ones who are fine but have to see it happen. I have been trying for over a year to find something - anything - to help my mom and save her. But I always end up feeling hopeless. I think of how soon this is for her, how much life she has left to live that's being stripped away, and how yes - a hug seems so minor - but when I hug her now, it's not the same as it was. I feel for everyone here that has been dealing with this disease either directly or indirectly. You are strong. You are putting on a brave face. You are putting yourself and your time aside for your loved one and THAT is the ultimate sacrifice. Please don't feel bad for how you feel. I think we all feel that. We grieve when we hear of the diagnosis, we grieve as they fail, and we have to grieve again when they pass. It's not fair... Try to keep as many good thoughts in your mind as you can. I know that is impossible some days, especially when it's a bad day... or when the bad days become consistent. There are days I wish I could forget and then there are days I wish I could hold onto forever. It's a give and take... keep talking here and letting the emotions out - I have found it helps. This is the only space I feel I am understood.
Beautifully and powerfully expressed. Very very moving and terribly true, heartbreak and all. Yes it's harrowing, but I remain deeply grateful that I had the love of a good man and was able to care for him - however imperfectly - through his long ordeal. It changes everything.
My wife died of CBGD in March 2019. After all the suffering she went through, I believe the Lord took her and she is healed now. We were married for almost 50 years. I miss her every day and I am looking forward to be with her again in the future. There is no answer to our "why" questions; all we can do is love them.
you wrote so eloquently putting on paper exactly hoy many of us wish to describe this horrendous disease. seems a secret disease as i knew nothing of it until my dear husband was diagnosed. The road has been long and hard with many misdiagnoses and one other condition NPH diagnosed finally in 2018 due to enlarged ventricles, gait issues, incontinence and dementia. Shunt fitted, limited success. hospitalised, assaulted staff, immobile cannot bear his own weight. needs everything done for him. We helphim from chair to bed and leans backwards with stiff body, not able to bend knees or tummy with his neck seeming to be pulled to one side. Assaults me also my son but love is unconditional and I knew him as the kindest most loving husband anyone could wish to have, Today for the first time in more than a year he invited me to sit down and have a rest and sounded as though he meant it. I wept my first tears of joy in a long time. Thankyou for your beautiful words which i will print off and cherish.
So very well said.. we have all felt it, wished it, lived it, and mourned over it even before the end approaches, forgotten who they were and have to work hard to remember the good times cuz the bad is so overwhelming a lot of the time.Hugs
Anna, God Bless You. I and all the others were meant to see your very enpointe message. It was not an outburst, unless that means you are finally bursting out with all the feelings you have harbored for too long and need relief from. I am exactly where you are! For the first time since my husband showed first signs of something in Dec 2013, I am thinking that he just might outlive me. Isn't that backwards sounding? I an SO exhausted and my body is breaking. Years of exercise classes have sustained me thus far but now I hurt everywhere in body, but as u so well stated, in mind and emotion foremost. 46 years of marriage for us, living with no family close by and only each other to rely on through thick and thin. i dont know how to go on without him. I have read the Anticipatory Grief help, I too cry when I see a movie such as you describe and too, when music plays that sparks memories. I cry a lot and it has been so many years that one would think i would be thru all that but i am so not! I also understand what u say about watching caregivers care for him not exactly as i do and trying to make it thru each day. My prayers for him and me and our only daughter have changed so much. I want peace for him and release from the suffering, and it has taken going thru a lot of fire, so to speak, to getbto that prayer. Thank you for making me feel that I am not alone. Prayers for you from me!
Dear Anna, I am so sorry that you are feeling like this. We have all been there and no one else, not caring, can really understand, but I am so glad that you used this forum as a safety net for yourself. I will send you a couple of things on a private chat. Big hug AliBee
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Emotional tsunami, still missing him everyday..
Yay! Finally...a PSP diagnosis.
Hello from Indiana, USA
