What a turn around...: My dad had a terrible... - PSP Association

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What a turn around...

23 Replies

My dad had a terrible episode on Monday night, coughed up horrendous stuff including blood, high BP, low oxygen, everything went wrong and he nearly died and was told he wouldn't last more than a few days. Today he is still in bed but bright as a button. DN insisted he was end of life and this week has been the biggest roller coaster ever!!!

I know have to find him respite in a nursing home as I can't carry on doing 24/7 care. I'm devastated as I'm so scared he might not come out if he goes in one but every health professional /family/friends keep reminding me I can't do this on my own...which I can't.

Anyone else experience nearing end of life/then finding their loved one turns it around??

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23 Replies
Zeberdee profile image
Zeberdee

We too have had a rollercoaster week. The worry and anxiety is overwhelming and wonder can I go on but hubby bounces back and I know this is not the end. Felt a complete failure having help but I do know you cannot continue on your own it just has to be accepted difficult as it is. Love Jx

in reply to Zeberdee

I totally started to prepare myself on Monday night, now it's a different story. I am starting the process after the weekend. Thanks for your reply x

Marie_14 profile image
Marie_14

Yes this happened to my husband. He was admitted to hospital and was unconscious by then. We were told to prepare for the worst. Anyway that afternoon he opened his eyes and was back with us. However 3 weeks later he died. He never came out of hospital which still upsets me.

Some people seem to get better before they finally pass away. From what you have said I suspect your Dad won't have very long as the bringing up of goodness knows what was the reason my husband ended up in hospital in the first place. He had aspirated so that was pretty much it.

Have you got nobody to sit at night with him while you get rest? You do need to sleep.

I stayed with my husband in hospital for 3 weeks only coming home when someone stayed with him. Frankly I just didn't trust them! I would like to say that was unjustified but sadly I don't think that was the case.

Hugs to you. This is a really hard time and impossible to deal with alone.

Marie x

in reply to Marie_14

Thankyou. The day thing is I am his carer but I don't live with my dad, I live 25 mins away and hv a family of my own. He definitely can't be left alone anymore like before so it's a nursing home for a while. I'm so afraid he won't get well enough to leave but I was struggling mentally & physically before this happened let alone now. It's all too sad x

Julieandrog profile image
Julieandrog

Yep! Little beggars, i think generally they are strong men physically this gives them the reseves to carry on.

Julie

Duffers profile image
Duffers

Hi. My hubby ger is end of life. He was in hospital but I, and my family, brought him home. If we didn't do it then he would have gone past the "right time" so we are happy with our decision. 12 days later he is still with us but i think time may be running out soon. It isn't easy to make a decision but whatever you do, then know you have done the best for your dad always. Keep strong.

Marie

in reply to Duffers

Thankyou so much.

Marie_14 profile image
Marie_14 in reply to Duffers

Marie I am so sad but at least you have him with you and I know how much that means to you. He doesn't sound at all well so at least you are prepared or as prepared as it's possible to be?

Marie (the other one) x

Duffers profile image
Duffers in reply to Marie_14

Thanks marie. I'm going to see an undertaker this morn for a chat/info. See what that brings. I've spoken to our priest and I'd like to do the traditional night before in the church.

Marie

Marie_14 profile image
Marie_14 in reply to Duffers

Marie has Ger died? I am wondering because you said you were going to the Undertaker.

Marie x

Duffers profile image
Duffers in reply to Marie_14

No marie. I went because my sister in law said she wished she had before gers brother died a month ago. My sister came with me and i asked every question i could think of. There for 1 1/2 hours.

Ger wont last long now. Very distressing watching him fight for each breath. Palliative care put his morphine up today and will again tomor. High secretions and sedation meds. I really didnt think he would be this bad at the end. Very sad and heartbreaking to watch. I hope god is good and takes him Soon.

in reply to Duffers

It's all so, so sad isn't it? On Sunday he came down with an infection and then had terrible chest last night & he also, is now on Morphine. I'm heartbroken that he's going through all this at the end. I'm praying for a more peaceful few days for him x

easterncedar profile image
easterncedar

He is alone at his own home if you aren't there? No Marie curie service? No home health aides? Ah, you are in the US, so no.

Does your father not qualify for hospice services through Medicare? Can you hire someone to help? I was lucky enough to find a really good aide privately who came in 4 mornings a week. The agency aides were less reliable, but there were some good ones.

If he will accept going into a home for respite for you, you should do that at least. If he doesn't come out, he will be professionally cared for to the end. It's not always good care, as stories here tell, but I think there are good places with good staff.

Best wishes, ec

in reply to easterncedar

I'm in Bristol, UK so started the process of finding residential care. He may qualify for CHC so tomorrow will bring more information on that front.

Marie_14 profile image
Marie_14 in reply to

Good luck with CHC funding. Do what I have just advised Cuttercut to do though. It is really important.

Marie x

easterncedar profile image
easterncedar in reply to

Hmm, I wonder why I thought you were over here? Well, I hope that means your father qualifies for some help. Wishing you best of luck with CHC and finding a good place to care for your father.

Peace, ec

in reply to easterncedar

Since I wrote this Dad has had two nights of being more unwell, chest infection and terrible chest pain to go with it. Chc fast track has now been put in place so his care package can be doubled which is am enormous relief as Im keeping him home which us what the past 2 years have been all about.

easterncedar profile image
easterncedar in reply to

Sorry to hear your father is suffering so. I hope they can find some treatment that will at least ease his pain. Hang on, Ec

Cuttercat profile image
Cuttercat

I can relate and sometimes think I should check the facilities and then the next day he's ok. Up and down all the time.

Cuttercat

Marie_14 profile image
Marie_14

Cuttercut check places out just in case? Check them by visiting but also by reading their CQC report online. Read the full report. They are not that long but CCG may try to tell you bad places are good! So do your homework while you can

Marie x

GovJ profile image
GovJ

Hi

Yes we have only just come out of a very similar situation. My father is in a nursing home. They called to say that dad has been coughing up blood. The GP was called and dad was sent to hospital. My sister was told by Dr in the hospital that my father would not leave there alive. Yet here we are a week on, dad back k in the nursing home. But his quality of life is not good. Not swallowing hardly eating,and a lot more frail.

When he left the hospital, they put him on GSF plan they deem him to be Amber, so not good. They have listed the end of life drugs when it is nessary for them to be used.

It was a horrendous week for our family. But a 87 my poor father continues to soldier on.

Good luck with your father. I truly understand the roller coaster your on. Very stressful. X

in reply to GovJ

Thankyou and all the best to you too.x

1RobK profile image
1RobK

I lost my mom to PSP in April. Looking back, I thought she showed signs of improvement, spoke a few words couple days before she pasted not having said anything for sometime. But, if I really think about it, she was on oxygen and a host of new drugs for anxiety and pain.

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