Hate

[darell]

My father was admitted to hospital with a suspected chest infection. It then was decided he had aspirated and now has pneumonia. We thought he was showing a tiny sign of improvement when out of the blue yesterday the dr told us he is not responding to treatment and it is very unlikely that he will survive. I hate hate hate this horrible disease (psp) that is taking my father from me. Looks like nothing to do but wait for the inevitable. Such a cruel cruel disease.

[Patriciapmr]

It's horrible I agree, don't really understand why something so cruel could be inflicted on the nicest of people, it really baffles me and always will!

Thinking of you....

Love Pat xx

[easterncedar]

I am so sorry. It is very hard to lose a parent. Wishing you whatever comfort love and good memories can bring you at this terrible time. Love, Sarah

[Heady]

Sending big hug and much love

Lots of love

Anne

[Ratcliffe]

Im so sorry to hear your news darell. Its such a horrible disease. I hate it too. We all do.

Keep up your love and thoughts for your father, and spend as much time as you can with him, he'll appreciate it. Hopefully he will take a turn for the better.

[Althea-c]

Sending love and prayers 💛🙏

[Kevin_1]

Darell

Hi, welcome to the site, I think, maybe I missed your previous posts.

PSP brings with it long slow loss of those we love. Often they watch their own demise as, unlike Alzheimers for example, the PSP sufferer is aware.

It is a hateful slow disease.

However I am going to say the unacceptable, please forgive me.

Pneumonia is referred to as the 'old persons release' in medical circles. It is a gentle pain free death.

Your loved one might not be ready to let go. You might not be ready to let them go. This whole thing is awful. But when I go I would want to go like that. With those who love me close by and then just slip away.

I do hope this does not cause you offence. It is just my take.

I am so deeply sorry you and yours are faced with this dreadful time.

Warmly

Kevin

[Hidden in reply to Kevin_1]

I was thinking about "the old man's friend" as well when reading his post.

I know Larry's end is getting closer. I use to think he would survive a bout of pneumonia. Now I'm not so sure.

[Katiebow in reply to Kevin_1]

Exactly my sentiments Kevin, Ben would welcome this and want no treatment as he no longer wants to be here.

K xxx

[NanBabs in reply to Kevin_1]

Wise words - as always. It is never the right time to say goodbye.

xx

[Melhukin]

So Sad.

X

[LuisRodicioRodicio]

Sending big hug.

Luis

[Hidden]

That is very sad, my dad dosent have long left so we've been told..it's just so hard isn't it.

Sending hugs x

[Kevin_1 in reply to Hidden]

Hugs back to you and yours at this hard time.

XX

[Pantopete]

So sad. My wife is in the final stage too.

[Kevin_1 in reply to Pantopete]

Hi Pantopete

Wishing you the both the best at this hard time.

Warmly

Kevin

[laila123]

my prayers with you

[allotmentartist]

No wordshe but plenty of hugs for all of theach people suffering with this horrible disease x x x

[Tippyleaf]

Sending love and hugs

Tippy

[Kalakingprince]

This is Deja vu for me. I went through this recently in July. I got the call from my mother that my father was admitted in the hospital. Flew the 16 hours and looked like he was making progress. Pneumonia was clearing up but secretions kept coming back. He was not comfortable. Everyone telling us to act in a way to let him pass with dignity. Dad was still fighting. We still wanted dad with us. But his quality of life was no life at all. No food by mouth or tube due to secretions. Very uncomfortable with constant secretions and suctioning. We had no choice but to transfer him to hospice for comfort. I never left my dad's side. Worked with the nurses on the morphine and robinul. People wanting to talk to you about funeral arrangements and telling you how many days are left. Active dying, thru kept saying. It's all such a surreal process. And the whole time you're watching your dad slip into a world you can't follow him into and you feel the most helpless you will ever feel. PSP is such a terrible disease and I now understand what people mean when they talk about a peaceful passing. A passing that is comfortable and with as little pain as possible. It's never the right time to let go, and you never have to completely let go. I know my dad has gone ahead to heaven and is waiting for us to reunite. And he's not in pain. PSP doesn't rule over his life anymore. We have an amazing community here. We all know the pain, the anger, the mixed feelings, the caregiver burden, the frustration that comes with PSP. I've always said - for those who don't know about PSP: good and hope they never have to. For those who know, it's a synchronized heart ache. Lean on us. Big group hug around you.

[JantheNana in reply to Kalakingprince]

In July,my husband was in nursing home to rehab from hospital stay and get PT to build up strength to go home.We thought he was improving when I got phone call middle of night saying he had passed away.They listed his death as cardio pulmonary arrest(heart attack) I am haunted by this,thinking it wasn't a heart attack.They never said he had pnenumonia but I suspect that he may have.

I am still grieving and taking one day at a time,just trying to cope with life without my beloved.Hugs to all. Janet

[Katiebow]

I know its painful to watch a loved one suffer but I agree with Kevin that the story sometimes not best to treat and fight for life. Did your father make his wishes known, my husband has made it very plain that he doesn't want intervention but wishes for a pain free end to his life.

Sending love and support

Kate xx

[Uscarol in reply to Katiebow]

My husband has PSP and although he is still "functioning", with speech failing, many falls , agitation has talked about not living with this disease. He had a recent heart attack and thought that he shouldn't have had his stents that prolonged his life. That is the hardest part of my story.

[Katiebow in reply to Uscarol]

Dear Uscarol I really feel for both of you, your husband who didn't want medical help to prolong his inevitable death caused by this horrific disease and yourself wanting the best medical treatment for him. Fortunately my husband had drawn up his Advanced Care Plan, the hospice and his GP were fully aware of his wishes and so I knew exactly what he had consented to or otherwise. Basically he wanted no treatment to prolong his life but was happy for treatment that would help prevent pain and suffering. At the end of his life it made it easier for me to take the course of action that he wanted and not for me to call for medical help at a time my instinct was to call the medics. I send all of my love and best wishes to you both, this disease certainly knows how to challenge.

Love Kate xxx

[Spiralsparkle]

Thinking of you and your loved ones as this very difficult time.

I hope he is peaceful and comfortable.

My Mum recently said to me I'm not afraid to die but I want it to be comfortable. It is all we can hope for when we depart the earth and I'm sure you will do all you can for him as you have done up to this point.

Hold his hand and talk to him.

Big hugs

Xxx

[NanBabs]

My thoughts are with you at such a difficult time. We all hate this cruel illness.

xx

[Hidden]

Sending (((hugs)))

Dee

[Tttp]

So sorry to hear about your dad, yes PSP is a terrible disease it takes alittle each day, no stopping it, just have to pray it will be peaceful for him your in my thoughts and prayers. Nettie

[doglington]

Sorry to hear about your dad. However, I agree with others that a painfree gentle death is what we wish for. I hope the family are together for him.

love Jean x