Sharing my thoughts

[JAK63]

I don't have any more questions for this forum. It has been so supportive over the last few years. My husband is, I hope, entering the last phase of this appalling illness having been diagnosed in May 2021. I suspect he has had it for some years prior to this, but we shall never know.

He has been in an excellent nursing home since April following a final fall which broke his hip. This accident seemed to send his PSP into a downward spiral. He is bed bound and only able to sit in a wheelchair for a very short period with the help of carers. He is so frail now after a rapid weight loss in the last few months (72 kg to 51 kg in 3 months). He manages to eat a little with help, and drinks even less, because he chokes constantly and it frightens him. It frightens all of us when he has choking episodes. He has supplements and special drinks to help boost him, but his weight continues to drop. We discussed a PEG feed a few weeks ago, but it was decided it was too late for him to benefit and the trauma of putting him through the procedure was just too much to bear. We cannot really communicate anymore. I hear the odd word but most of it is done through hand squeezing.

He is in constant pain even with the strong pain patches he now has to rely on. I know there is other medication that he will be able to have but we are not quite there yet.

I knew this illness was going to be awful, but I was not prepared for just how awful it would be. I feel I am unable to do anything other than perhaps be a comfort. Because he has no facial expression anymore, it is difficult to know how he feels about anything. I miss his smile.

I hope for his sake, and I must admit, mine too, that this final stage does not last for too long. I want peace for him.

[Bergenser]

Thank you for sharing your thoughts. My heart aches for you 💜. Big virtual hugs 🫂

[salamandaX]

Sending hugs and wishing you and your husband peace.

[Sawa]

I lost my hubby to PSP 7 years ago now, and my heart goes out to you as your words bring me right back. This final stage is hard (as they all are), but it can also be the stage where you stop being a caregiver and can focus on being a wife. A dear friend on this forum gave me that advice when we were in this stage and it helped me. PSP gave my hubby a peaceful ending, at least, and I wish the same for you. Family and friends had a chance to say good-bye and I was with him when he passed.

Please don't underestimate 'just being a comfort'. That probably means everything to your husband right now, and you are the only person in the world who can do that very special role for him.

I wish you strength and peace x

[JAK63 in reply to Sawa]

Thank you so much for your words of wisdom. They have helped more than you will know. x

[Sawa in reply to JAK63]

Hi JAK,

I've been thinking of you and your husband since your post. Just wanted you to know that you are in my thoughts and I'm sending all the good vibes that I can your way.

Sawa

[maxandpoppy]

Hi JAK I lost my husband to PSP last year. From my experience I would just say, have a frank discussion NOW with the nursing home and doctor about the decision to use stronger drugs. Our last week was horrible - no active intervention from the doctor, just left to the nursing home's judgement. They seemed mainly concerned with watching their own backs than responding to Alan's suffering. My heart is with you.

[JAK63 in reply to maxandpoppy]

Thank you. I have got to know the nurses very well over the last few months as I visit 1-2 a day. We have had some very frank discussions about pain and end of life. We are all singing from the same page, thank goodness. I appreciate your input though and I will continue to be heavily involved. My husband's welfare is my only priority. I think the PSP journey is so very difficult for all those involved and I wish you peace too following they loss of Alan.

[Bertieandpiper]

Thank you for sharing your thoughts. Sending you both peace and hugs.

[messier]

virtual hugs 🫂

[LuisRodicioRodicio]

Hi JAK63 !

I am shocked by your story, which brings back sad memories. I think you did well to tell your experiences, because the stress that a caregiver develops, especially in the main caregiver, even more so if there are emotional ties, if it is not properly relaxed, can degenerate into anxiety and even depression.

My solidarity. A big hug and courage. Take care.

Luis

[Diggerandsam]

Bless you. I’m a PSP sufferer and I sincerely hope I don’t get to this stage, both for my own sake - but I would prefer my relatives remember me as I used to be; a strong lady both physically and emotionally. I’ve been suffering for a while now but have gone downhill pretty quickly in the last few months. I hope the end comes before I travel much further on this horrific journey. Best wishes to you and your husband

[JAK63 in reply to Diggerandsam]

Thank you for sharing your own story. It one of life's cruel turns of fate that this illness takes away so much from those who suffer from this awful illness and the sadness of those who care for them. I wish you well and may your journey be not too tortuous.

[daddyt]

🙏🙏🙏

Tim

[EggonToasttostart]

My thoughts and prayers are with you. You are doing an amazing job. Just sharing the last journey with someone is a wonderful gift to give.

[Leosta]

Dear JAK63, your heartbreaking post brought back memories for me. If your husband follows the same time path that my husband experienced then this final phase probably won't last for too long.Praying for you both at this very difficult time. 🙏

[brandysuki]

our love and best wishes to you, my wife has not reached this stage yet but I am dreading her doing so. She seems to be suddenly deteriorating but her mind is still quite sharp. 💕xx

[45purple]

Sending hugs and hoping you both find peace soon from this horrible disease. We don’t want to lose our love ones but at the same time we don’t want them to suffer. I can’t believe my darling passed 6 months ago. Lost without him 💜

[Thrallsj]

Hi Jak,My step father was finally properly diagnosed October of 2021 after all of the parkinsons drugs were ineffective. We look back in retrospect and can trace his symptoms back to 2017 when he was on a hunting trip and someone asked my mom if he was a drinker because he had been stumbling around the campsite. By 2019 the falls had become more frequent and the guys had nicknamed him "fall down Bob" having no clue what was really happening. My heart is with you as you approach the end. Bob passed away Aug 14th of this year. This is a brutal disease and we are all in the same boat with the understanding that NOTHING could have prepared us for what this disease was going to do or take from him. I can only offer you my deepest empathy. We were lucky enough to keep him home with caregivers and ourselves. Lifting him into his chair for an hour or so before getting him back in the hospital bed. The pain was awful and along with the patches we were able to convince the hospice nurse to get him muscle relaxers. His passing was very quick from the last time he had some drinks and yogurt. Only a couple of days and I was there when he quietly took his last breath. It was the most peaceful I had seen him in 3 years. We miss him terribly but not seeing him in pain anymore was all we could ask for. This is the absolute most wretched disease. I pray for everyone that one day it will no longer exist. I'm so sorry to you and your sweet husband and family.

[JAK63 in reply to Thrallsj]

Thank you so much for your heartfelt response. It really is the most awful illness you can imagine. When I look at my husband lying there I think, is this really him? The man I knew who was so active, fit and sharp minded.

I wish you and your family peace too and thank you for your thoughts and kind words.

[easterncedar]

Hugs and music get through. I wish i had played more music for my sweetheart.

[Calamity_j]

sending love and hugs x

[Harshacceptance]

I hope you find peace again, we all do.

My dad is in some stage I didn’t ever think was possible. I spoke to my son last night and said I didn’t think it would go this far.

I watch my mum breaking everyday, as for like you I hope she can have a life after this. It is a cruel disease.

The suffering of my dad far exceeds the pain we will have when he has gone, he will be at peace.

Sending you massive hugs. My mum, like you has been caring for my dad, someone said above, the comfort comes from being a wife.

I don’t know what more to say, it’s like reading a mirror image of my parents.

[Hidden]

I’m so sorry. My father declined in the same way at the end and died four weeks ago. PSP such an awful illness - we also weren’t prepared and made the same decision as you to not do anything to prolong the suffering. This is the first time I’ve messaged on this forum but it has been an invaluable source of information and support. Thank you.

[messier]

my deepest sympathies Jak63 and Kingfisher70

[LittleOllie]

This is totally relatable and I empathize with you. My mom had PSP which devastated our family. In the end it is peace that you want for them and we never left our mom's side. Sending you strength and courage x

[littlin]

Hi Jak, I'm so sad to read this post, it brings back so many memories of those last few weeks. I lost my husband in February this year & you are describing how it was for us as a family. We were able to keep him at home with the help of carers & hospice. He had, had a peg fitted about 18months before but all feeds had to be reduced/stopped as he was unable to digest them anymore. He was more comfortable then & the last week he was more peaceful then he had been for a long time. He knew we were there with him, we played his favourite music & just to be there was a huge comfort to him & us. Just being there for him now is giving him the comfort & peace he needs. It is a tough journey & you must take care of yourself also. I will hold you in my thoughts & prayers.