Charles only has pain when he eats and it's in his esophagus.
I wasn't clear but Hospice has pared down his medication and we will keep the morphine when things get really bad. Not time yet.
Since we don't have a Feeding Tube and won't, what experience have you had with the end of eating ie: choking etc. He is so very skinny and even though he eats he isn't getting enough nourishment to continue.
Bed looks like it will be the spot soon as he can't really stand to transfer.
So hopefully I've explained myself. It's so hard to figure out what to do and being helpless is truly the hardest thing I have to deal withl
He just wants me with him in spite of all the people that come in to help periodically.
Thanks everyone.
Cuttercat
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Oh my heart aches for you, George never complains of pain, so haven’t got an answer for you. I think maybe when they are near the end, they just want the person they really love, which is you next to them, maybe they are frightened and feel safe when they have the one they love next to them. Sending you a big hugs. Yvonne xxxxx
Charles never complains either just tells the nurse it hurts to eat. But that will come at the end. Like you the coughing and choking make it so hard. Does George have a peg? I forgot.
Cuttercut my husband had pain in his legs and arms. However apart from painkillers he didn't have anything else for this.
He decided he didn't want a PEG. I didn't go against his decision. We both knew this would lead to death. When he ended up in hospital after a bout of aspiration pneumonia his swallow started to go. We fed him jelly and ice cream. The hospital also gave him special drinks to help build him up. I realised they were trying to do their best but knew it wouldn't make a difference. Eventually he refused everything and of course he died.
So the end of Charles journey will be death. It will be the same for all of us, because we all face death in the end regardless of what we die of?
It is incredibly hard to lose the person you love and it is natural to try to hang onto them for as long as possible. However we really do it for ourselves, because we can't bear a life without the one we love. It has taken me twelve months to realise and come to terms with that.
Maybe Charles hasn't reached that stage yet but he will. Maybe they can give him strong painkillers? If that is the case why haven't they already done it? It's not for me to say what your loved one should have. I certainly thought from your last post that he was in a lot of pain trying to swallow. If he isn't then that's different. You are the one best placed to know what decisions should be made Cuttercut. That doesn't mean we are not here for you always. We can suggest all manner of things but only you know if it is the right thing to do.
I am so very sorry you have to face this. It is a very difficult and heartbreaking place to be.
Someone talked about the swallowing process on here - someone who was a professional(?) She explained how the food can fill the esophogus bcz it may not be getting the time it needs to go down all the way. Maybe he is feeling pressure from the back up!?! I 'll try to find the post - wasn't that long ago.
CC
Unfortunately they don't give us a book on this darn disease and stages,only thing I would do maybe forget food for now and get the nutrients drinks they have high calories ones here.
Breathing, eating and walking! I never thought grief would be such a physical pain, the longing to see Rog and touch him is sometimes unbearable.
The amazing thing is now i can only see him well, i cannot remember what our dark days were like, so lots of joy with the pain. I am so lucky that I have this amazing blanket of friends and family who engulf me in love and kindness.
It is a process , and each of us is unique in that process.
This is my biggest fear as well. I can hardly bear it now and I know it will be worse when he goes. I just hope I can see him wll again I can't somehow.
Cuttercut I know what you are going through and how helpless you feel. My hubby never once complained and like Charles refused a peg. All medication was stopped and of course weight plummeted. DNs advised very important when swallowing becomes difficult to ensure the lips are continually moistened with Vaseline. My hubby’s drinks were thickened and I gave him tiny amounts on a spoon but eventually even this could not be taken. I am so sorry that I cannot be more helpful but now is the time for you to keep telling Charles how much you love him, lots of cuddles and kissing, especially on the lips. I post this with tears and will be thinking of you both. Love and hugs Jxx
Agree with others. Chris was bed bound - had a pulsating mattress.
Keep him happy and feeling cosseted. I creamed and trimmed him so he felt cared for. Gave him food he could manage until he refused to eat. He slept a lot but as soon as he woke he needed my hand. I think he needed to know he was still home. - to be kissed and stroked and feel loved.
Its so sad. You were supportive of me when I was in this place.
I imagine this is what we would all desire in our dying days, knowing that those we love are there to help us through the unknown. I was with my dear Mum in her final hours and feel honoured to have been able to support her as she left this world, it was a good death. I so hope that Ben is able to follow the same with me and the family by his side, you just never know!
Hi CC, when Steve's swallowing finally went I put food into his mouth, he seemed to have swallowed it, so I would keep going. Finally the food came back up, just oozed out of his mouth, no choking, being sick or anything. There was no drama, he gently faded away after that. Didn't appear to be in any pain.
I would get a doctor to check him out though. Never heard of this particular symptom.
This is "precisely" what I was asking. I hope it will be the same. All is ok now but his eating has dimished. Lost so much weight but still wants to eat.
Hello all - I also rarely post and never knew whether I would again - my husband died in January (PS)P) and his cremation was last Friday so it has been a gruelling time since Boxing Day when we were able to take him to the beach - such a very rapid deterioration.
I am responding as I understand have experienced very recently the situation you are now facing. We decided to not have PEG feeding and I stated no antibiotics nor trips to A&E. Don had a cold in the run up to Christmas and it knocked him for six (my last post). Two days with him on Christmas Day and Boxing Day with the whole family and our son who is only 18 years old and the last 3 years could not have prepared me for the end with Don.
He was able to remain in his care home in his room/home of the past 14 months surrounded by familiarl carers (who really did care and who were great with Don). Don never ever complained the whole way through the cruel disease of PSP and in fact only had one dose of end of life drugs, about 40 minutes before he died. As Don was semi-comatose for a while and unable to communicate at all by hand squeezing the last few days I was then unsure of him being in pain. He lost the ability to speak, swallow about one week before he died although this was a key element for a few months prior to that. He was also virtually immobile and bedridden for 2 weeks before he died, which would not have helped in any way.
The cause of death was simply PSP but the Senior Carer who stayed with me through to the end thought Don had a heart attack - most definitely breathing was the main concern although the GP 7 days before death said his chest and abdomen was clear. I stayed with Don and comforted him albeit he probably didn’t know I was there but I understand hearing is the last thing to go - I basically talked him down to let go and reassured him that our son and I were ok and that there would never be any improvements for him and no life as he knew of going forward - he visibly calmed and stopped breathing but of course that could have been due to the end of life drugs helping him to relax.
So the moral of my story is, there is no being ready for the end - all the work and plans you would have put in place over the run up to this point will work for you and all of us know that our thoughts and feelings are with the sufferer .... I can only say dig in and focus and personally I am so pleased that I had the courage to remain firm that Don should remain where he was and not go to A&E nor the Hospice.
All the very best and be brave, very very brave - my heart goes out to you and all those who will follow in dealing with this awful awful experience xxxxxx
Can you not get ceiling hoists? which is how I transfer my husband and having a wheelchair that tilts back is another must have. That way your husband won't have to be confined to bed just because he can't stand.
my husband would be confined to bed if I couldn't transfer him into a tilting wheelchair. We would never be able to go anywhere. I can't imagine that.
All the time I have had the right equipement and essentials for my husband, I have been able to manage and it breaks my heart to think others in the same situation as myself, haven't got access to the same essentials, or even been told what is available out there!
Well there you have it my love....just be with him....don't worry about a pain that cannot be stopped (well , thank God for Morphine) an appetite that cannot be satisfied; a path that can no longer be walked. So what is left? The greatest and only thing needed, YOUR LOVE FOR EACH OTHER. You are giving him the only thing he wants ...you....give it to him baby....and not just with tears.....when no body's lookin'... give him something only you can give... hahahah give him a fantasy....a dance ... a dang good massage......and when someone is lookin give him a comedy; a talk about America's president ....now if that's not slapstick...I don't know what is....Sorry my Republicans...I am not a democrat just a cynic.....Anyway, give him something you all enjoyed and can relatively do.... I know I'm just talking a mute point, but I do hope you get my point CC, You are giving him the best thing he has ever and can ever have....you.....
Dear CC, we aren't at that stage yet but can see it coming, feeding Ben is becoming more difficult. Some days he eats his meals with no trouble and others it's such a trial for him. Today he was so sleepy and falling asleep as I tried to feed him, another day he wolfs it down. He is very thin now, we have high calorie shakes at the ready but he's not keen. My instinct is to keep on with the normal food that he enjoys and let nature take its course. He doesn't want any medical intervention but it is hard not to try to step in to prolong his life knowing it's not what he wants. Ben hasn't complained of any pain when eating but has pain in his shoulders and his left hand is now very distorted no painful.
Wish I had a magic wand to wave all of these horrible symptoms away.
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