End of life

[Sophie2019]

Hi, my mum passed away in January of psp. She was only sadly 60. Just curious to know if anyone else had the same situation when their loved once’s passed away... she had pneumonia and couldn’t shake it for 2 months or so and we was told her oxygen levels was getting better... suddenly a day later they stopped feeding through the peg as they knew she wasn't going to get better.. she hung on for 1 week.. by this stage she couldn’t eat. Drunk, talk, walk basically could not do anything... i just feel like it was cruel to let her go this way? Thanks

[enjoysalud]

I live in Los Angeles, CA, USA. My son died at barely age 55, May, 2017.

After his 2nd bout of aspiration pneumonia he opted for a PEG. He thought it would help his quality of life. He was under Hospice care. When he noted that he was not getting better....the disease was progressing....HE OPTED TO NO LONGER BE FED.

His decision was HIS alone, there were no "they stopped feeding through the peg as they knew she wasn't going to get better".

My son also couldn't eat except for the PEG, or walk, all speech was gone (although he still managed to communicate with gestures, finger pointing, etc), control of all his bodily functions were gone, etc etc etc.

If it was NOT your mom's choice, YES I think it was cruel.

If it was your mom's choice, I'm happy for her....that she is NO longer suffering this progressive cruel disease.

Los Angeles, CA, USA

[Imperfectlyperfect in reply to enjoysalud]

First off, my condolences to you. Same exactly scenario with my mother. Tube feedings for 4 years, stopped talking, only gestures with yes and no questions. She never wanted to stop the feedings at least she didn’t say she did. Such a hard time. She wasn’t tolerating her feedings anymore(trying to vomit but couldn’t die to her mouth/jaw being locked shut so we have to slow them down then stop. How did your son let you know he didn’t want them anymore? I have just regret but wanted her to not suffer.

[kenh1]

One of my friends who is a District nurse who attended my wife at the end of her life explained to me that they have to stop the feed as the digestive system shuts down as a part of the body shutting down.

[Dadshelper]

I am sorry for your loss. It seems someone in the family or your Mom should have made the decision to stop feeding. They should have at least given a really good explanation as to why they thought this was the best course of action. Without knowing the doctor's reasoning I can't honestly say if it was cruel or not.

Ron

[NannaB]

Like enjoysalud’s son, my PEG fed husband opted to stop being fed. He didn’t have any infections but like your mum, could do absolutely nothing for himself except slightly move his thumb for yes and no. I don’t know the exact circumstances of your mum’s last days but she was never going to have much quality of life if she had continued to be fed and although I loved my husband with all my heart, it was a relief to see him no longer suffering and free from PSP. I was fortunate that he had made the decision but if he was unable to and I was asked if feeding should stop, I would have said yes. I’m sorry your mum had to go like she did but she is at peace now and hopefully you can soon look back at the good times and the horrors of PSP will fade.

Best wishes

XxxX

[Mtorres9235]

So many questions at the end of this disease. I am sure we are experiencing those final stages but are not sure if my husband with CBD will resurge once again. All. We can do is support him. I hope we understand when the body is shutting down and stop feeding him but we don’t get much help from his doctor. The doctor has thought he was close to dying for 5 years! He has been diagnosed since 2008. Continue to live one day at a time

[Mtorres9235]

So sorry for your loss

[LuisRodicioRodicio]

A big hug.

Luis

[daddyt]

So very sorry for your loss. Hugs and prayers.

Tim

[Hidden]

When my mom (PSP) entered the nursing home l was fortunate to have a hospice nurse explain what might be ahead for us. I thank God for her straightforward caring talk. Unfortunately not all health care professionals have that talent. I wish you well as you travel through your grief... losing our moms is so hard. Sending hugs... Granni B

[wear1947]

Very sorry for your lost.

This site can help you supporting your grief. We are here to read your confidences.

Stay thought. Your mum rest in peace.

Big hug

Elena

[PSPSOULA]

So sorry to hear that Sophie. My condolences for your loss.

[SewBears]

Dear Sophie, I’m sorry for the loss of your mum. If they were giving your mum anything to ease her suffering toward the end to keep her comfortable then I don’t think that it was cruel. That still doesn’t make it any easier on the people who love her and they have to witness her going through the final stages. There should be a more humane way to go about it. At least she’s free now and no longer in pain.

Sending huge hugs.

Xoxo ❤️I SewBears

[Sophie2019]

Thank you for everyone’s comments, I’m just pleased she is now at peace x x

[AngelineAmy]

Sorry for your loss. May she rest in peace.

[SusieTess]

Please don’t agonize over this so called decision....always keep in mind that she is now at peace released from this devastating disease...no matter the ending, her journey is over...no matter what, that was her light at the end of the tunnel because there wasn’t any other way to go....please find some peace for your self, now...

Sending hugs, Kathy

[Jackie1968]

Dear Sophie

So sorry to hear about your mum.

We are now at this awful stage with our mum she’s fought with this awful disease for 10years plus. She’s now 71 totally bedbound no speech lost a huge amount of weight since Christmas.

On Thursday we was told the end is near she is no longer eating and they are deeming it dangerous to drink as she has lost all abilitiy to swallow .

As much as we don’t want to lose her we do want her suffering to end ,

How long this will go on for we have no idea and nor do her carers or doctors seem to know .

Heartbroken and anxious .

Jackie