I wish I knew what to expect (late stages).

[Blots]

My father has been in a care home since a stay in hospital with pneumonia last year. He declined a PEG, but sometimes is just too tired to eat or drink (food and drink are much the same really, all thickened or puréed to about the same consistency). He can’t speak or move apart from a little head movement and the fingers of his right hand. He was recently started on diamorphine to control agitation and pain — it’s painful when he’s moved, because all his muscles are so rigid. I think they’re switching to fentanyl patches

I know there aren’t any answers, but I wish I know how long this would last, and what more can fail, when it already seems there’s nothing left.

I think the last time he was weighed was in January, and he had lost three stones in the previous four months. He’s lost more since then, but I don’t know how much.

[Heady]

Like you say, there are no answers. All I do know from my own experience and others that have posted. PSP for all its horrors, the end is normally very peaceful.

Sending you a bug hug and much love

Lots of love

Anne

[Blots in reply to Heady]

Thank you. My father has been surprisingly accepting of all the horrors, and that is certainly a big plus in the midst of so many negatives!

[doglington]

My husband died in October. He was frail and weak and stopped eating and drinking. He died peacefully, without pain. It had been the thing I feared so much but in fact was a merciful release.

Thinking of you all at this sad time.

Big hug from Jean x

[Blots in reply to doglington]

Thank you. I’m so sorry about your husband. I agree that along with grief at losing my father I’m sure there’ll be relief that his suffering is over.

Some of the grief is there already. Things like realising that I can’t quite remember the sound of his voice, and that when I picture him walking, it’s with the unsteadiness of PSP, not the way he was for most of his life.

[doglington in reply to Blots]

After he died my son said how he fought PSP with courage, dignity and humour.

I am now beginning to remember him active pre-PSP

The memories are still there.

x

[Blots in reply to doglington]

I’m glad you’re now able to bring back better memories. I hope it’ll be the same for us.

[Mary82]

Saw this post and didn’t want to read and run. So sorry you are going through this. Your father is a strong willed man. Hang on to that thought of him. Sending you lots of love and prayers.

[Blots in reply to Mary82]

Thank you. He has been amazingly strong through all the dreadful things this disease has thrown at him. Even now, when he can’t speak or move, he’s gracious and cooperative with the people who look after him.

[Richanne]

I'm asking the same question. Jon's swallowing has been deteriorating for the last couple of weeks culminating in a dramatic aspiration pneumonia last night. He has refused PEG but unable to swallow now. In hospital on IV antibiotics and dextrose drip. It's the weekend (of course) so no doctor till Monday but I think we're looking at him coming home after infection clears unable to take anything by mouth. Most distressing is he is trying to communicate but hardly anything is inteligible. I can't help wondering if he is trying to change his mind about PEG. Jon was only diagnosed in April 2016 but symptoms started 5 years earlier.

Sorry if this is a little off-track. Just back from hospital and 2 gins down. Sorry for your plight. It's such a mix of feelings between wanting them to stay and wanting the suffering to go.

Love to you and Dad

Rosemary

[raincitygirl in reply to Richanne]

Rosemary: thinking of your comment "..wondering if he's trying to change his mind about PEG.." Can he look at a picture or symbol and point? E.g. Could you write PEG twice on a big card and put a big green checkmark under one, and a big red X under the other? and have him point to confirm his intentions??

[Richanne in reply to raincitygirl]

Thanks for the advice. Unfortunately it's not practical for us. I would have to hold the board high up as his gaze is very upwards and there's no way he could lift his arms up that high. I have tried to ask him to hand squeeze but he doesn't react. Ive asked him to blink but he doesnt do that consistently.

However he's communicating a little better today so I asked if he's changed his mind about PEG. I think he said no but couldn't get a repeat to be sure. So difficult isn't it? Anyway I've told him in the absence of anything definite to the contrary I shall assume he us still against it. I think I would have seen signs of agitation if I was wrong.

Rx

[raincitygirl in reply to Richanne]

I'm sure you're right Rosemary.

Hugs and strength to you XXX

[Richanne in reply to raincitygirl]

Thank you.

Rx

[Robbo1 in reply to Richanne]

Dear R, please don't beat yourself up thinking that a peg will solve the feeding problem.

My lovely husband died in January. He had a peg from the previous May. Near to the end they couldn't give him anything by peg as it would come back up into his throat with the risk of aspiration into the lungs. He had a syringe driver for medications and pain control going through a needle into his stomach.

Tell him you love him make sure he is comfortable, ask people he would wish to see to visit. Sadly, from our experience, it doesn't sound as if there is much time left. My 3 children and I spent the last week in B's room talking to him and to visitors ,( we knew he could hear as he indicated by raising an eyebrow). When he died there were just the four of us by his bed, gently singing, " Amazing Grace " to the guitar, then listening to one of his favourite hymns. When we noticed a change, we gathered round him telling him that we loved him and that it was alright for him to go. That we would be alright.

As my son said in his eulogy, B slipped away with amazing grace, very gently, two small breaths out and he was gone.

A great man, a great loss, but he died with dignity, knowing that he was very much loved. I wish the same for you and your family. Rx

[Richanne in reply to Robbo1]

Thank you for a comforting description of how it can be. I am prepared and he seems to be quite comfortable at the moment. I just want to get him home as soon as hes finished the antibiotics. But I'm sure the hospital will, want that too.

Rx

[Blots in reply to Richanne]

We are in a similar position, and my father is never someone who wanted to talk about this kind of thing, so we take note of what he can communicate, but apart from that we just do the best we can to pick what is best for him and what we think he would choose.

I think a PEG is a good choice for someone who has difficultly swallowing early in the course of their illness, but by the time it became a serious issue for my father he was at the point of not being able to support his weight on his legs for transfer from chair or bed; not being able to do anything with his hands; not being able to see well; not being able to speak; suffering regular infections… it’s not as if better nutrition will really improve his quality of life at all.

As well as declining the PEG, it’s also been agreed that he won’t go into hospital again, and since the care home can’t give intravenous treatments, that means that when he can’t swallow, or when he gets an infection that needs intravenous antibiotics, he will die. Such hard decisions to have to make.

[doglington in reply to Blots]

Exactly like my husband. x

[Blots in reply to doglington]

Sorry to have this experience in common.

[Richanne in reply to Blots]

I think you're right, that PEG is best used at an earlier stage. Jon is in pretty much the condition your father was. All he was doing at home was sitting in his chair, being hoisted from there to the bedroom to be changed and back.

Rx

[Blots in reply to Richanne]

Hugs. It’s so hard, isn’t it, not to know what they’re trying to tell you.

[doglington in reply to Richanne]

Exactly how Chris was. I cried because I couldn't understand what he wanted to say. It became clear that he wanted no more intervention. He was ready to stop. He didn't want more hospital. When he knew I understood that, he trusted me to follow his wishes and became very peaceful. Others on this site also found their husband was ready " to pack it in ".

For me, recognising that all efforts would only bring him back to a miserable existence, made it feel right.

Thinking of you Rosemary.

love from Jean xx

[Richanne in reply to doglington]

Thank you Jean and how nice to put a face to your post now.

My own opinion is definitely against PEG on the grounds that it will prolong a miserable existence as well as bringing possible complications. But the struggle is being as sure as I can be that this is still also Jon's feeling.

My son (an emergency doctor) has said very helpfully that, if I'm deciding, there is not a right or wrong decision just the best one I'm able to make. He's coming over from Tasmania on April 16th. Can't wait.

Love to you

Rosemary Rx

[doglington in reply to Richanne]

With Chris it was clear as he became very agitated when he heard the doctor say he needed to go to A&E. When I said to him that if he didn't eat, he would die - to squeeze if he understood he was able to be clear.

I think there is a time when it is not worth the effort. I felt overwhelmed with the sense of responsibility, although, like you , I was clear about my own feelings. Big hug, Rosemary.

Jean xx

[Robbo1 in reply to doglington]

Jean, I know what you mean. I think they recognise that they have fought the good fight and now it is time to give up fighting. We would not want them suffering. It is just so hard to accept that life has to go on without them. Big hug. RX

[doglington in reply to Robbo1]

I know. I'm in the same place as you. I miss him so much - as he used to be. Big hug back, Jean xx

[BalajiN]

We are in same boat with my dad having extreme constipation and diarrhea doing turns. Along with some wounds, inability to express pain, rigidity, choking, that helpless look on the eyes, I just got to hear mom say yesterday, "they all shall go to heaven as they have spent more than their share of hell". Your question is same thing that lingers my head very often.

-Balaji

[Blots in reply to BalajiN]

It’s horrible to feel so helpless to do anything for them, isn’t it.

[doglington in reply to BalajiN]

Big hug, Balaji

Jean xx

[Zeberdee]

As others have posted there is no normal with PSP it destroys the one you love. My hubby’s ending was quiet and peaceful and so the suffering ends for them. My thoughts are with you. Hugs Jxx

[Blots in reply to Zeberdee]

On the whole, my father seems peaceful. It’s the one good thing.

[Lisa_Jane]

So sorry for what you are going through. It a very cruel disease, Nobody can predict how long. My dad is at a similar stage and the doctors have said to keep him comfortable and pain free, my heart goes out to you and your family

[Blots in reply to Lisa_Jane]

Yes, comfortable and pain free is where we are too. Hugs to you and your family.

[margh2468]

I ask myself the same question daily, Leon (hubby) is now in care, I tried so hard to keep him home, but he is unable to do anything now, has PEG tube since July 4th last year, is down to 58 kgs, can no longer talk, except via alphabet, brain is amazing, he continually feels he is choking, and knows that death for him will be choking or pneumonia, it is so so cruel.

Hugs to you from Howlong NSW Australia

[Blots in reply to margh2468]

My mother has spent all the time since my father went into care going over and over whether she could possibly have kept on looking after him at home, but she really did it for much longer than you would have thought she could manage. This is so hard on the carers as well as the people who are ill.

[margh2468 in reply to Blots]

Thank you for replying Blots, it does help to know others are in a similar situation

Cheers & Hugs MargH

[Katiebow]

My husband (Ben) is in the later stages of this crippling disease but is still able to eat and drink puréed/ thickened. He has lost a lot of weight, hardly any flesh left on his bones now, his hands and toes are very contorted, shoulders stiff and cause pain, has regular choking bouts, can't make himself understood as voice quiet and muffled, can't see properly but understands everything being said. Being trapped in your own body must be so frustrating and I so admire the way he conducts himself, he's a superstar in my eyes. He has stated no PEG or hospitalisation for infections, he still holds with that when I ask. I dread that he will end his days in terrible pain or distress. These posts make me hopeful that won't be a the case. Meanwhile I just carry on, day to day managing with the help of carers.

Sending much love

Kate xxx

[doglington in reply to Katiebow]

I hope your journey will echo mine - as it has so frequently.

big hug from Jean xx

[Blots in reply to Katiebow]

That sounds exactly where we are. Lets hope they all get through with a minimum of pain and distress.

[Sawa in reply to Katiebow]

Hi Kate,

My husband passed just over a year ago, just over 6 years after diagnosis. As with so many here, his passing was very peaceful. He had been adamant since the beginning that he didn't want a PEG and about 6 months before he passed, made it understood that he didn't want any medical interventions to prolong his life. We were incredibly fortunate that he was under the care of a palliative care specialist who administered the necessary drugs to keep him pain and anxiety free at the end. He stopped eating and drinking one day and then slipped into a deep sleep and eventually a coma. He passed away peacefully with me by his side after 2 weeks which allowed friends and family to see him and say their goodbyes. It was a peaceful, dignified end to his long and courageous fight. PSP does give many this blessing at the end.

Hang in there!

Sharon

[Katiebow in reply to Sawa]

Thankyou for your response, I so hope that when Bens time comes he has the same experience as your dear husband. The anticipation is almost too much to bare, this disease is master of that isn't it!

Love Kate xxx

[Fjrose2]

Hi My name is frank rose. My wife passed away two months ago from PSP. My wife stopped eating on Dec 27th 2017 because she could not swallow any more and at that time she had lost over 150 lbs. She did not want a PEG or a IV. She passed away on the 9th of Jan 2018. It all was very peaceful. She just closed her eyes and went into a deep sleep for about 5 days. She could still hear me because when I ask a question she would squeeze my hand. Hospice ordered morphine just in case so she would not experience any pain. All of the Doctors and hospice told me that when you stop eating the body has a natural way of dealing with it. I wish you the best of luck in this trying time

[Katiebow]

Reassuring to read your post it gives hope that the end will be peaceful, dignified and pain free. xx

[Blots]

I just want to thank everyone who replied here. I know I missed some posters in my replies. I’m sorry you’re all going through, or have been through, the same things, but your generous support really does help.

[Tazchar]

Praying for u both