Difficult decisions

littlebylittle

Registered User
May 21, 2014
11
0
Ontario, Canada
I don’t post often but I look at these threads every day and my heart just aches for all the pain this horrible disease causes. I wanted opinions on infections and whether to treat them. My husband has been in the hospital for 9 days with aspiration pneumonia and a UTI which are both clearing but he’s not eating very much. He’s fully dependent and spends his days sleeping with his music on. He had a pretty good appetite before these infections. His quality of life is pretty much NIL. He lives in a nursing home about 20 minutes away from me and I visit him 4-5x a week. He’s 65 and was diagnosed with Posterior Cortical Atrophy in 2014. Just a few days ago I told myself that if he ever got another infection, I wouldn't have it treated and that would be the end but somehow that doesn't feel right to me now. My husband always did things on his own terms and it got me thinking that maybe the end for him should be when HE decides. That time would likely come when he stopped eating. Not treating an infection is like murder, for lack of a better term, to me. This is sitting heavy on my shoulders and my mind. I have an obligation to him to "do the right thing" but I don't know what the right thing is. Does this make any sense to you? We’re faced with so many difficult decisions and this one has to be the most difficult of all.
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,259
0
High Peak
I'd love to give you some advice and say, 'You should do this...' but it's just not that simple.

Decisions on whether or not to continue treatment are so personal. My family have always been very open about such things and we all believe in quality over quantity. If it were possible, I would choose euthanasia if I had dementia. But my boyfriend is the complete opposite! He would want to have any treatment if there was even a 1% chance it would keep him alive. I struggle to understand his attitude which seems bonkers (and pointless) to me, but I respect his right to feel that way.

What do you think your husband would have wanted to happen at this stage of his life if you'd asked him before dementia? You know him best...
 

jaymor

Registered User
Jul 14, 2006
15,604
0
South Staffordshire
I think when it comes to refusing medication the medical team will be advising you. hopefully they will give you a clear picture to help you decide. Right now your husband’s body is fighting two infections, little energy and just not wanting to eat.

My husband survived two bouts of aspiration pneumonia and bounced back but his appetite was never the same. The nursing home gave him fortified drinks and milkshakes containing fresh cream, ice cream and puréed fruit.

it‘s true, we are faced with so many difficult decisions and sometimes it gets just too much. We can only do our best and you are certainly doing that.
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
I felt the same with dad, it just doesn't feel right to not treat. Dad aged 88 was in hospital with pneumonia, he already had terminal cancer and dementia although he still lived at home and had a good quality of life. He also had a heart attack, a stroke and three falls while in hospital for three weeks and we were called in one night to say goodbye. It was awful for dad and for me.

I can't advise you other than follow your heart, it sounds to me that you may be left with many regrets or guilt if you withdrew treatment even when it seems the right thing to do. I couldn't do it, although if I had been in dads place I would have wanted to go. No answers I am afraid. I wouldn't call it murder but if it doesn't feel right then it may not be the right choice for you in the long run. It's a horrible horrible disease and I wished my dad away when he was in hospital, just to end his suffering and mine, then they said he would not last the night and I prayed that he would get over it and then he bucked up and there we were, back to square one again. It's just cruel.

Dads oncologist said that dad could have anything to keep him comfortable which included antibiotics, blood transfusions and iron infusions and he had all of these but she also said he should have nothing invasive or anything that could make him uncomfortable so no op's, no chemo. I took her guidance and I made no decisions for dad and this worked well. Dad had no treatment for his cancer, he was far too frail but he lived another two years from diagnosis. He was treated for his pneumonia and survived that too.

Surprisingly dad came home and lived for another year quite happily until he died at home probably from the cancer.

I would listen to the medical team, they may make decisions for you. Sorry that you are in this horrible position.
 

Moggymad

Registered User
May 12, 2017
1,314
0
I think when it comes to refusing medication the medical team will be advising you. hopefully they will give you a clear picture to help you decide. Right now your husband’s body is fighting two infections, little energy and just not wanting to eat.
This was my experience with mum. Like you I teetered on the edge of indecision but mum decided for herself by stopping eating & drinking. She also in a rare moment of understanding, turned to us & said no more so we knew it was the way to go.
Thinking of you, it is so hard to do x
 

Agzy

Registered User
Nov 16, 2016
3,780
0
Moreton, Wirral. UK.
This was my experience with mum. Like you I teetered on the edge of indecision but mum decided for herself by stopping eating & drinking. She also in a rare moment of understanding, turned to us & said no more so we knew it was the way to go.
Thinking of you, it is so hard to do x
My dad, who had Parkinson’s dementia was the same and just gritted his teeth and refused to open his mouth. Took 3 weeks of sad decline but added a lot of respect to my love for him.
 

Staff online

Forum statistics

Threads
138,152
Messages
1,993,509
Members
89,813
Latest member
Sharonmatthews1976