Fighting death : Crazy how things change, I... - PSP Association

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Fighting death

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Crazy how things change, I know it's progressive but I've not been able to keep up....

Dad got another aspiration pneumonia after being home 3 weeks, they tried with antibiotics but it didn't work. Dad made it very clear to us and the doctors he never wanted to go back into hospital. The antibiotics didn't work and the decision was made to stop treatment.

The past week has been one hell of a journey, he is fighting his death like he has fought his cancers and his PSP. Nothing I've read, and I try to read everything, has prepared us for what's happening, his fears, pain, hallucinations. He has a syringe driver with all sorts of meds in, he seems settled today but yesterday and Friday were horrible. Dads at home with myself and my sister, we haven't left him for days, just the way he wanted it but it's so hard. He's in and out of consciousness and hasn't drank for over 4 days. How long can he fight for? We're listening for every breath, just waiting.....

This is harder than we ever imagined, I worry that he's stuck in his head worrying about death, he was so scared. We just want him to let go peacefully and as calmly as he can.

My heart goes to every patient and family member. xx

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19 Replies
LynnO profile image
LynnO

I'm so very sorry you and your sister are having to go through this. My thoughts and prayers are with you both.

LynnO

easterncedar profile image
easterncedar

This is a terrible time, and my heart goes out to you.

I'm sure you have told him it's okay to let go? Wishing for peace and strength for you all, Ec

Dear Melis 1, I was so sorry to read your post, it reminded me of my father's death. It is such a difficult time. My father was in hospital with this aspiration pneumonia and nothing working to clear it. He was in great discomfort and of course no cure. I was beside myself and so I took him in my arms, tenderly as one would do with a sick child and kissed him and put my cheek next to his and explained quite clearly that he had a brain disease which was impossible to cure. That if he could, it would be best for him if he could 'let go' if that was possible and to cross over and go and join nanny. We called my mother nanny because of the grandchildren. I told him that nanny needed him and was waiting for him and if he could he was to go to her and the two of them wait for me to join them. I told him how good he had been in this life and what a wonderful husband and father he had been and how much he was loved by us all. He had been given some diamorphine but I was not sure how much. I stayed with him until he went to sleep and his breathing had eased and not so painful. I stayed very close and held his hand. Fortunately, he never woke up and I was glad that his suffering was over. I had no idea how to manage it really. It was just that desperation took over and I knew he had suffered enough. I hope I did right. The story about my mother waiting for him just popped into my head. I thought it might ease his fear and make him think of the nice times he had had with her. Dad was 97 years old. He really had just had enough.

Andyclairea1 profile image
Andyclairea1

Goodness this is so hard. I pray for you and your father that he finds the final bit of strength to let go. As Nader did maybe giving him permission in a way might enable him. After all our parents have been there for us I can imagine he doesn't want to leave you. God bless your in my thoughts and prayers xxx

Auntiemary profile image
Auntiemary

So so cruel. I hope it's not too much longer now for you all. Our love goes out to you xx

Katiebow profile image
Katiebow

So sorry to hear that your dad is near the end but fighting to hang on, so distressing for you all. When my mum, who was dying of cancer, was near the end she was fighting it too. The hospice nurse said to talk to her, tell her you love her and give her permission to let go of life and join my dad. whether it was coincidence or not but she calmed down and passed away very peacefully. She did for one moment become very lucid and asked if we were all there, all four of us girls were able to reassure her we were all there and she seemed to let go and drift into a very peaceful death. It is what I would want for my husband Ben who has PSP. trouble is that you just never know how it will be and that is very scary. I do hope that he is able to let go and die peacefully too, I am always grateful for my mum's 'good death' made possible by the hospice staff and am forever grateful to them. I do feel your pain and hope that the end is as peaceful as possible. xxx

KJN99 profile image
KJN99

My heart goes out to you and your family. How wonderful for him to having such a loving and caring family around...what you are going through is so difficult but he knows you're there and that will be a comfort.

Heady profile image
Heady

My thoughts are with you. Sending big hugs and lots of love

Lots of love

Heady

Thank you, support and reassurance really does help. I have to admit I've shed some tears reading your comments, heart breaking yet beautiful, both myself and my sister have told him it's ok to let go and how much we love him, that we will be ok. I hope he finds peace in that. Thank you all so very much xx

Doglinton profile image
Doglinton

I pray he has a peaceful and merciful release.

You are all lucky to have each other.

love to you all, Jean x

gwend profile image
gwend

so sorry for you - prayers and thoughts with you, your sister and your dad

sending you peace and strength - and lots of love

abirke profile image
abirke

Can the dr give him something that will calm him? In a hospice, they do not give life sustaining drugs only pain relievers and fluids. Have you thought of a hospice it is like home...better than home....you can be there whenever forever or if you have to go , you know he is taken well care of......

I feel your pain and pray for quick relief for all of you.

AVB

in reply to abirke

He is being pain killers, and 2 other sorts that help with calmness and saliva all in a syringe driver and we have other controlled drugs in the house. Dad didn't want to go into a hospice, he wanted to stay at home. He's been very calm for 2 days now. Doctor came today again and are amazed by him, doctor didn't think he would make it this far, they don't know my dad! But calm and settled is ok xx

abirke profile image
abirke

Well my next thought is , "God Bless you!" what you are willing to go through shows that you have your fathers resilience in you....you, like he, will fight till there aint no more fight to be fought... loyal and true to the end!

God bless you,

AVB

in reply to abirke

Thank you, thank you, beautifully put and gives us strength. Thank you xx

Bob40 profile image
Bob40

I am so sorry. This happened to my mum a few weeks ago. All food, water stopped on Monday as she couldn't swallow and she passed peacefully on the Friday evening. We also couldn't believe her inner strength and fight despite being so frail. You can only do what you think is right at the time but we also spoke to her and told her we would look after dad and that she wasn't to worry, that she'd done all she had to do and was loved. You are in my thoughts

mthteach profile image
mthteach

Melis1, Praying for peace for your family. Keep close while he makes the translation from our earthly body. He knows you are there, and that you are strong the same as he was. Strength and prayers going high into the sky for you.

JAYNIE62 profile image
JAYNIE62

I am so sorry to hear you are going through such a difficult time.My Dad had similar experience in his last weeks and when we finally managed to get him discharged home he went about 9 days without nutrition of any kind but his poor body couldn't fight any more.Sending you love and prayers xx

dogsmother profile image
dogsmother

My Mother has this dreadful illness too. Her situation sounds very like what we're going through, although mom is being cared for in a nursing home now. We found out recently that she's also got bone cancer and at over 80 years old, she seems to be fighting but with absolutely no quality of life. Every day since the beginning of the year she's got worse and worse and we feel like each day will be her last. It's awful, you wouldn't keep your pet alive in this terrible condition. Her mind is still there, and that's almost worse as she knows what's happening to her and can't speak or do anything except lie in bed with useless limbs. My heart breaks for her every day as I'm sure yours does for your father. There's no simple way through this, it's very sad indeed. I feel for you and anyone else going through this. x

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