Advanced/end of life stage: Hi all, After... - PSP Association

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Advanced/end of life stage

Julieanne25arobinson profile image

Hi all,

After the sudden deterioration of my mum, her dr phoned me last week to ask my feelings on further investigations or hospital admittance. She has advanced renal failure which the dr has repeated blood tests for. I have said that it would be too distressing to move mum to hospital to be poked and prodded around at this stage of her life. He agreed that any infections and pain will be treated but nothing else as it will not improve her very non existent quality of life! She is eating very little now, although her food is now puréed. The last few times I've seen her she has talked about her mum (who died in 2002) and even thought I was her mum. She's also asked to come home. I feel that maybe she knows she hasn't got much time left. As a family we have also said no to peg feeding and agreed a DNR. How long does this stage last?

JULIE X 

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Julieanne25arobinson profile image
Julieanne25arobinson
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10 Replies
Heady profile image
Heady

Hi Julie, sorry I can't answer your question.  Just sending you a big hug and much love at this awful time for you.

Lots of love

Heady

NannaB profile image
NannaB

I think the only one who can answer that is the doctor treating her, and even then it will only be an approximate time.

My hope and prayer is that whatever time your mum has left, she will be pain free and peaceful.  

Sending you a big hug.

X

Hello Julie. So sorry to hear about your mum. I lost my mum to psp last month. She never reached some of the stages that I read about on here, she was still able to eat normal food and was fairly with it , but in the last week before she died she definitely did change. She wasn't able to move at all, and transferring from chair to toilet with the hoist was very hard going. She also got confused and I guess that was an infection. Then suddenly she just didn't wake up, we COULDN'T wake her. The doctor eventually came (she lived with us) and confirmed pneumonia. Mum had signed forms last year stating she didn't want to be messed about with so the GP just told us that this was near the very end and that it was kinder to let her go. She died the next morning, no pain relief they said that she wasn't in pain. So in our case I think the 'very end stage' was only about 4 days in total. I hope that if this is the time for your mum that she is pain free and allowed to leave this awful illness. Thinking of you xxx

showaddy profile image
showaddy

Sending all my best wishes and hugs to you. Dreadful time but if going to hospital and tests won't improve the quality of you mums life I think the question 'is it worth it' has to be answered truthfully. I cannot imagine anyone - not even the doctors can give you an accurate time for the time your mum has left. My advice if I can presume to give it is to be with her as much as you can, hold her, tell her you love her and hope her passing is peaceful. Remember in the months to come that you did everything you could to make her comfortable and enjoy the happy memories of your mum before she was ill. Thinking of all  your family at this time.  Pauline xx

gwend profile image
gwend

Hi Julie, 

so sorry to hear about your mum

I lost my dad to PSP about 1 month ago now - for him he was in hospital for a week and that was it - at the end he was sedated and painfree. 

I dont think Drs know how long it can last - it depends of so many thinks and on your mum too.

my thoughts and prayers are with you, your mum and family as this is hard .

I found it a very difficult time as you are sad to have to lose someone you love so much and yet so wanting for them to be at peace and not suffering anymore.

Lots of love

Gwen

Andyclairea1 profile image
Andyclairea1

It's heartbreaking we lost our lovely dad just last month. His very end stage lasted 1 week. All meds stopped on the 11th, dad stopped eating and drinking on the 14th and passed peacefully on the 18th. I still can't believe he's gone but I spent the last week with him sleeping well no not sleeping but holding him, reassuring him, praying with him and loving him until his last breath. Sadly Nothing can prepare you and no one can really predict their ending just be there if you can and pray if you believe. I wish you and your family all of the best and pray your mams passing is peaceful all my love. Andrea xxx

blackcushion profile image
blackcushion

Thoughts are with you at this difficult time, tell them all you need to say to them before they pass thinking of you x

Doglinton profile image
Doglinton

I'm sure you're right to let things take their course.

Hope your mother is painfree and you are able to make sure she feels loved.

Thinking of you all.

love, Jean x

easterncedar profile image
easterncedar

Hey, Julie, how are you and your mother doing? Just thinking of you, wishing you whatever good there can be. Ec

Julieanne25arobinson profile image
Julieanne25arobinson in reply toeasterncedar

Hiya, it's been a tough few days, mum's dementia has got worse, she thinks I'm her mum! She's not eating much and the weight is dropping off her. Such a hard road x

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