He can't swallow. Period. Does not want feeding tube. This in writing from the beginning. I told him he was allowed to change his mind. The look he gave me was,"How can you be suggesting this when you promised me you would not". All he's been through and it comes down to this?! When pureed food or thickened liquids are put in his mouth they come right back out. I am beside myself. Have tried everything. He is sleeping constantly and cannot even hold his head up. His legs are contracted. I knew this would happen eventually but I was too busy trying to cope to really think about it and now here we are and I am not ready for this. I thought I would be prepared, relieved even but I am falling apart. Made the decision to put him on hospice, which here means no more hospitals or interventions. I keep beating myself up for all the things I could have or should have done to delay this happening but it's all a moot point now. I hate this. I just hate this and I am falling apart. This just sucks.
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goldcap
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Oh goldcap you are and have been doing absolutely the right thing since before diagnosis and most certainly after. Do not beat yourself up. It does indeed suck and you will be able to keep it together if you take deep breaths and ask God for his guidance...If your husband has chosen not to use the tube, then so beit, darlin.....the hospice will make him as comfortable as possible. You must do the same. I don't know if or when it is time for your husband, but I do know that falling back on good memories of your marriage and family is essential right now. Call the family so that those who loved him can be around him and you....One is never prepared....I can only say this without yet going though it...but I can only imagine that all the preparing one does just doesn't measure up to the reality. Make sure you have those around you that you love....and know that we here at this site love you and so does the Lord....
Jayne no matter how much we think we are prepared for the next road we are not. I thought I was prepared in June when he was in hospital and since then I had been expecting the last stop light on the rocky road. But when it came I can remember saying to him I wasn't ready for this.
My heart goes out to you and I hope when he joins his highway (to heaven) it will be peaceful for all concerned... Jane xx
So Sorry,I went down that road in July.I tried to get some moisture to his mouth with swabs but the teeth were clamped.Theoretically I had agreed earlier but instead of holding his hand as he left I asked him not to go,you are not alone.I was able to get his two daughters and two grandchildren to see him in the last few days thank goodness.We all have the right to choose and yours has made his choice I wish you all the strength you can have for what is to come Sincere love to you,Px
It's so hard to accept that a loved one has made a decision which really means they are ready and will die. We all spend our entire time making decisions for their welfare and comfort that it's heartbreaking when they finally make that one last irreversible one for themselves. Do not beat yourself up. You have been on a long hard road yourself and like the rest of us probably spent all your waking hours physically and mentally worrying and working for their best interests. Of course that does not help at the end but please be kind to yourself. You have done your very best for your husband. God bless you and keep you safe and strong. Marie
Marie, he is done. He was in the hospital. I told him he had to get well enough to leave or he would die there. When he recovered I thought he had regained his will to live as well. Floored me when I realized that was not the case. But you are right. This is and should be his decision not mine and I promised him so would carry it out so I am. When what I really want to do is pull the covers over my head and hide.
Oh Goldcap, I echo what everyone else has said. Don't feel you haven't done enough, it's his decision. My darling decided on a PEG and he wouldn't be here now if he hadn't had it but it is so hard knowing he is suffering. Sometimes he moans and it sounds as if he is in pain but he can't tell me where it is and he can't tell me if he regrets his decision. The hospice will make your darling comfortable until he leaves you and it will be hard but when he does go, he will wake up from this nightmare that is PSP and so will the rest of you.
I know Nanna. I just caved in for awhile there. Got my resolve back. Have too much to do to fall apart now. But he just started moaning a little while ago out of nowhere. Dont know what that means..
The PSP moan....hmmmm. When I ask him he does not seem to recall. and the only way I can relieve (for only a moment) him is by massaging his face a little....
You know what? last night at bed time, I gave him a full body massage ...one you could give your mama...and he fell right to sleep and did not moan all night.....hmmm....
These are my sentiments exactly NannaB. The recent moaning. I know that there is a "PSP mask", but he seems to be looking at me like He is just realizing something is wrong with him....a "help me!" sort of look....The last few days he has been turning his suction machine back on immediately after using it and turning it off. On and Off on and Off and then on for long unused periods....finally last night I asked him what he was doing,...."I have forgotten how" was his answer..."how to turn it off?" I asked ...."Yes"
I look at him Bev and I don't know its almost like the reality of PSP has just set in for me as well...I sort of feel in as much shock as the look he is giving me....Like the realization that any more progression and much of his independence I have been fighting tooth and nail for is going to really really be gone........and this progression of the disease only worsens even after I feed him a high vitamin, high protein proper calorie meal!
I'm sorry Jean.....some days I can handle it...and I can handle it today...I'ts just the need to verbalize our little life.....right now he has drainage from sinuses...and it freaked me out till I remembered he had drainage before he had PSP so I gave him some sinus med...but its all icky in his throat.....and he can't hack it up.....poor baby...in fact if anyone has an idea how to reduce the seasonal crap in the throat of a non cougher I would be much obliged!
Sorry AVB, I have no idea. I have the dreaded itch at the back of my throat, think it may be the start of a cold. Last thing I need and there is no way S can afford one. He can't cough either.
I think what you are describing about the sudden realisation about the progression of this evil disease, I have just being through. The knowing for certain, where this is all leading, even after all this time, does suddenly hit you. All the fighting to keep him fit, well fed, all gone up in smoke. We just have to hang on to our initial feeling, each day he could walk, was one less in a wheelchair. That still holds true, even if we have now got to the wheelchair stage. Our fighting, did keep that day at bay. Even if it was a short while.
I think it's worse when they give up before we do. Then we are left with, what, wait, you can't so this now I'm still willing to fight this! Come on, we"be come so far, no , not like this!
When I joined this site over three years ago there were people on here further down the PSP path than we were. I felt so sorry for them.
Much to my surprise we have wheeled right by them. And I know the sad part of it is when we move on there will be others pulling up the rear. It is like a sad sick race to the finish line in which no one wins.
Do you think we can report this to the UN, aren't they out there to stop all the torture in this world of ours. I know been well and truly water boarded today!!!
It's heartbreaking isn't it but we can't do anything to stop the progression; even more heartbreaking. All I can do is give C lots of hugs and kisses and try and reassure him that I'm still here with him, still love him & if I could take this from him I would. I hope it helps him feel better inside but I will never know.
Jayne, I have just been through this very recently and it is soooo hard. Try not to feel guilty it's not your fault. Please private message me if you would like to and I will try to offer whatever help I can.
It is hard but honour his wishes, hold him let him fight PSP in his way. Hope you can get him into the hospice for the palliative care. All my prayers with you both. Tim
Oh Goldcap, my heart goes out to you. There is nothing I can add, apart from agreeing with all the other posts. Especially Duffer's. This is the final choice your husband can make, probably the only one he has made in a very long time. I know it's extremely hard and you don't feel ready, I'm afraid you never will. All you can do, is tell him you love him and hold his hand.
By letting him have his final wish, you have done everything you can and could possibly could do for your husband. Let him pass, knowing you feel proud of yourself, for fighting as long as you could, to the point that he can now take over his life again.
Sending a very large hug and much love. We are all thinking of you at this terrible time.
Thanks Heady, you seem to always know the right thing to say. Don't know where Id be without the support of you and everyone else her on this site. I didn't think about it from the prospective of it being the only choice he has been able to make in such a long time. To busy feeling sorry for myself which I am stopping as if right now.
Well Done Goldcap! There will be plenty of time to feel sorry for yourself. Now is the time to celebrate his life, sit and relive those wonderful memories of your life together. Take him back to the good times and let him go, knowing he has seen you smile again.
Dear goldcap, my heart goes out to you and I'm sending you lots of love and strength for the coming days! Absolutely heartbreaking being able to do nothing, but rest assured the hospice WILL keep him comfortable. In the meantime please darling look after yourself!! X ❤️
Can only agree with everyone else. It seems that the only thing you can do is allow him to make this decision. I don't think we are ever really ready to say goodbye. Its so hard and my thoughts are with you. A big hug, and love from Jean xx
Oh, you poor dear! I am stopping to pray for you right now. May God wrap his arms of love around you at this time and bring you peace and comfort. And may your precious one simply go to sleep as a baby would. I don't know you but wish I could hug you tightly. Prayers...
Oh, I am so sad for you. I know how much you have done for your husband, and how much you have taught me about this dreadful disease. You should have no "regretters." Let me know what I can do since I am literally just down the road.
Hi Christine, hope your move went smoothly. Am ok, nothing anyone can do at this point- unless you want to do my paperwork for me Keeping my mind occupied I guess. Went to the store and got stronger drops hoping they might up his apoetite but just made him more sleepy than he already is. I keep thinking he will wake up and be himself again. ( Or as close as he's been to " himsel" in years.). But not going to happen I know. Hope your guy is doing well. And your mom. Please take care of yourself you have a lot on your plate and people depending on you. Xx
Goldcap. Your have an amazing job. No one is ever ready to let their loved one go. They have entrusted you with their wishes for end of life care. I have made these promises as well. It is the only control that victims of terminal illness have and often what keeps them going Knowing that it is their decision when to draw the line at treatent. STAND firm in this last act as his advocate. You have been doing this in so many ways all along and done it so well. Strength and peace . Prayers going your way . Take comfort in the group hug surrounding you both.
I completely sympathise as I'm going through exactly the same experience with mum. Have been at her bedside at the nursing home now for 32 hours. She has not had anything to eat/drink for 5 days. We had a pretty rough night and thought she was ready to go a few times then she opened her eyes and has had pretty much since, although fixed in an upwards stare. She is looking for my hand all the time and fighting this cruel disease with all her strength! Now had a few shots of medication to make her comfortable.
Just wondered if anyone has had the experience of a prolonged death?
We're still here! After the years of suffering I cannot believe that she's had to endure this too! She appears to sleep and breathing deepens then wakes up and lies so still. She occasionally whimpers and tries to move then is given medication .
Yes 8 days from the moment we wer told to be by his side. His heart was strong. Just as in birth we come when we are ready....i feel the same with death. Its awfull. Painfull to watch. Thoughts with u , with all of u on this site xxxxx
Hi, had a long night, again. "Hoping" that we're almost at the end of the road. Think God is away on vacation at the moment!!! Just been looking through posts - sorry I didn't realise you were also in 'the thick of it'. Sending my love.
Carolyn, Wow. Talk about a slow form of torture. I am sorry this is unfolding in this way for you. You must be exhausted. Try to get some rest. Sending you hugs, love, and yes Hope!
Considering mum's not had a voice for a very, very long time, she's making up for it. It's like the brain has flicked a switch and now we have constant groaning 😩
Bless u. I just lost dad. And was at that point 2 months earlier....i thought id feel releif. I thought i couldnt bear the end. And i couldnt. Im sat here cant beleive hes gone. My mums heart is broke . My brothers are too...4 yrs looking after him. God im not making much sense. Just sending my live....dont even know how i feel but i know how u feel 😢😢 xx
Oh gelcap, you are a love, just lost your dad and you are trying to help me feel better. I feel for you all. I hope his passing was peaceful and I am glad he no longer has to go through the struggle and pain of this awful disease. My heart and prayers are with you! Jayne
Oh how I feel for you Goldcap what a heartbreaking position to find yourself in, he made his decision and the hard thing is to see him suffer. Ben and myself have had long discussions about PEG feeding and he says a definite 'NO' knowing that it won't be an easy passage. If he had the choice he would chose assisted dying when he has had enough but I doubt that option will be available to him when his time comes, I feel very sad about that.
My thoughts are with you both and i know you will be of great comfort to him in his time of need. Thank goodness for the hospice movement, they will help to make his time as comfortable and pain free as possible and also support you and your family.
Gold cap. Everything you are feeling is normal. My husband died from psp in July. He was 73. He chose a feeding tube because he wanted more time with his family. It prolonged his life in this terrible disease but he did not regret it. He hung on for a long time. He was sick for 6 years. My regret was not spending more time with him not realizing that he truly was dying. That things were shutting down. So spend time with him hugging him holding his hand and telling him what a great guy he is how he took care of everyone and how much you love him. Tell him you and your family will be fine thanks to him but he has been living in hell and it is time for him to take the hand of the Lord and go and check out heaven. To save a place for you and to watch over all of you from heaven. It's ok to cry when you are talking to him. But do it You will be glad you did. And remember after he is gone that he is not gone but just gone ahead and he will always live in your heart
Kylie, it really did not sink in until today that he is dying. I am alone here. Trying to get his children to come. His only other sibling just went on a vacation knowing he is about to pass away. Said his good byes before he left. I guess everyone deals with death in their own way. My family live across the country. They never warmed up to him as this disease has affected him long before he was diagnosed. They always disapproved of our union. So no support there. I have so much paperwork to do but am going to get in bed with him and cuddle and talk to him like you said to. Thank you for telling me your story and your advice. I hope you are doing ok on your own now. I imagine it is a big adjustment when the grief quiets down and reality settles in. Hugs and prayers to you too!
You are doing the right thing. You will be glad you took the time to be with him now. There will be time for paperwork later. My prayers are with you both now and si is the Lord. He only wants you with him now not a family he hardly knows. You are all he needs. Stay with him comfort him love him. You are what he needs.
Hi I am Uma Patel . I was in same boat like u . I been through same thing six months ago . Very frustrating My husband was in hospice care for seven months. He don't want feeding tube . I tried same thing but he was eating only frozen boost . That was even hard too . He just passed away August 31 but that devil PSP was killing my husband & me . So be patience with your self . Pray God , he will give you all the strength u need . Hospice care is really good , their nurse visit once a week & will answer your all questions. I had very good expirence with nurse.She was taking good care of my husband & also giving me great moral support . God bless u & give u all strength .
Una, I am sorry for the loss of your dear husband. I officially signed up for Hospice today. Our assigned nurse comes tomorrow. It is hard to believe this is really happening. Thank you for taking the time to reply to me. Don't know where I would be without the support of those on here. Hope you are adjusting to life after being a caregiver. Must be a confusing time.
I'm going down this path as we all are. Charles also has said No feeding tube, etc. Choking all the time, I'm still trying to puree everything but it's inevitable.
As for being ready, I hate it when people say "you are already grieving" yes, but it is DOUBLE GRIEVING. While they are with us and then afterwards. Terrible!
I get, " At least you have time to prepare ". As if one can ever prepare. And this disease lulls you into thinking things are not bad , not good , but you're adjusting to the not bad and then WHAM it sucker punches you and you are left with the wind knocked out of you gasping for air in between sobs. Got hospice today. It's really happening. Can't even swallow his puréed foods now just sips of water - barely. Look after yourself because really in the end that's who you are left with. Sorry so morbid- long scary day.
Big hugs and fingers crossed on your hospice decision.
Thank you, thank you Jayne. My feelings exactly and your insights telling. I think about it all the time but it still doesn't help. The anger at PSP and the sadness it brings is overwhelming.
I am thinking of you, girlfriend. This all seems so sudden, when it comes down to it. Even when we think we can't go on, we don't really want it to be over. It's all so very hard. Sending love, Ec
Hi Jayne, I do hope you are taking your own advise! Looking after yourself. It's just as important know. You will have to travel regularly to the hospice, which no doubt means car journeys.
I hope you have had some support today and over the next few days. Know our shoulders are all clumped together, for you to rest your head and there are so many arms around you, we can't all fit in!!!
Heady, we are doing home hospice. Very popular here in the states. It was a revolving door today of caseworkers, nurses, even a priest! Honestly, wish I had signed up sooner. The support is amazing! I thought I went to sleep and woke up in the UK. Cried during so many of the interviews. Not used to anyone (except you guys asking how I am. He is holding on. Visitor (ex carer somehow managed to get some of his son's baby food in him after several days of not eating anything!). Trying to keep him with us until his children arrive which is a week away. I am exhausted. It is like our home is possessed! Broken pipes, botched repairs then repairmen showing up out of the woodwork to fix things that I have been calling about for the past month when he was hospitalized. Go from laughing at the absurdity of it all and the realization of what is happening and crying.
Goldcap struggling with this site! Just want to send you a great big hug and all my love. We have nothing in place for my husband's wishes! He just doesn't want to know what is going to happen. So I have to deal with it all and although I know he wants a DNR in place it hasn't been done and I have never asked about feeding. You have done totally the right thing though.
I hope and pray there is enough family and at least a few friends around you now. Nobody should have to face this alone. I am going to try to get things sorted before we end up with things happening which we wouldn't want.
Thanks for your kindness. If you want to chat to me please do. Alright if you have had enough of me too! Just give yourself a big hug everyday from me. I will be thinking of you even if I don't hear from you. You gave me the courage to tell it how it is.
If you do one thing get his wishes down on paper if possible. My husband was in complete denial early on but I finally pinned him down and glad I did. Now I can make sure his wishes are carried out for him. Let him know he can change his mind later on if need be. But it is important to find out what he wants while he is still able to communicate it clearly to you. And devise a simple system for later on like 1 for yes and 2 for no or thumbs up or down. There are Carers on here who were able to find out late in the game if their loved ones changed theirs minds by having a way for them to communicate it. I wish you strength and calm in the coming months and years.. It's a difficult path. Stay on here. It's the best support you will get anywhere. A lifesaver for all of us in the dark times, and an amazing source of information. And a great place to vent, cry and yes celebrate the daily sweet moments.,
As a caregiver it's never easy is it? I'm starting to see this in my husband he feels like he has a lump in his throat is that how it started for your husband? He has CBD and I just see a big change and now I'm going into the hospital for a pacemaker, our girls keep wanting us to move closer to them so we will have them near by. We are working on it but till then I worry every minute. Hang in there I will keep you in my preys. God bless.
Marg, I do hope you upcoming surgery is totally unevetful! Moving closer to your girls is a great idea. When you are recovered from your procedure you should start researching the move. We downsized early on to a one story home. It was sad and challenging but it was so worth it. No stairs and we did an accessible bath/ wet room. From what I understand CBD progresses more quickly then PSP. It was like a lump in his throat. And he started stuffing his mouth. Then the choking began. Everyone progresses differently. Not everyonev gets the same symptoms at the same time or at all. So random. But you are bound to find someone on here who is at the stage or has been and can offer you advice and support. I wish you calm & love.
Goldcap and others in the USA. It was suggested that we have a POLST (Physicians Orders for life Sustaining Treatment) ---it is very pink paper -- since if one dials 911 this is now what they look at for directions before an Advanced Care Directive. I keep it visible by the front door.
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