You are here

OT-Hospice

ESMOD's picture

So.. as it turns out my dad did not fully recover from his flu and got pneumonia last week and was readmitted to the hospital.  After several days in, he convinced us that he had no interest in rehab and in fact wanted to go home and die on his own terms.  We are very sad that he made this choice as his doctor felt that there was a chance of recovery but I guess dad wasn't willing to risk an impaired quality of life.  Not sure how long we will have him with us but we are trying to see him as much as practical (not knowing the full timeline).  He has basically stopped eating and had not really eaten anything for almost a month at this point.  I guess he could change his mind but at this point, I'm not very hopeful and honestly, he has earned the right to make his choice at 88 years.

Comments

ndc's picture

So sorry to hear this, ESMOD.  I hope your dad's remaining days are peaceful and that you have some quality time with him.

 

bananaseedo's picture

I'm so sorry to hear this.  It's his choice in the end.  It's not easy.  We had a good experience with hospice.  In fact I wish he would have gone into hospice a lot sooner then he did-instead of us doing 'home care'.  We weren't prepared for all that took and it was too difficult emotionally and physically on us all.    Enjoy your time with him to the fullest. Again, so heartbreaking.  I'm very sorry. 

ESMOD's picture

Thanks,  My husband had been with him at home for over 2 weeks 24/7 until he went back to the hospital with pneumonia.  Then he was in the hospital for another 5 days.. where he pretty much had recovered from that.  But, when my brother went to see him sunday, he reiterated that he wanted to go home and let it be "the end" without any further medical intervention.  His doctor said that recovery was possible but would be a long road and a short rehab stay was what was needed to help him get back in shape to a point where a more complete recovery was possible.  Dad pushed back on that.  My husband said he was willing to help him when he was in a recovery mode but not if he was just going to "quit and watch him die".  In a way, I think my husband is most upset about his decision.  But, who knows perhaps his decision isn't really his final answer, just a way to manipulate everyone into letting him go home.

Fade to black's picture

ESMOD, I was a hospice RN for 15 yrs, everything you stated is normal. Hospice is allowing those with a terminal diagnosis to state their terms and pass on the way they wish. I have had many pts  change their minds and go back to active treatment.  I have had those who wish the illness to run its course and us keep them comfortable in the interim. Hospice is there for the choice of patient and family. I dont know if it is still in print, but there is a booklet called "Crossing the Creek", and another called "Gone From My Sight" that will shed light on what is to be expected during this transistional time. Perhaps Google may have it, or else the hospice nurse may have a copy for you guys. It is really comforting and lets you know what to expect in those final days. Just a thought,  I know this is hard. Hugs to you and yours!!

ESMOD's picture

Thanks for those suggestions.  I honestly don't 100% know what to think or expect so I will try to find those publications.  My dad has asked for some Jello this AM.. so not sure if that is a sign he is going to change his mind..or just a passing request because jello makes his mouth less dry.  It really is difficult to ride the rollercoaster of seeking hope or accepting declines.  It's complicated because my dad is really not suffering from a particular acute illness at this point.  He had the flu and that is past.  He had Pneumonia and took all but a couple days of the antibiotics and based on his Oxygen levels when he left the hospital, his lungs seem to be working too.  Right now he is weak and wasted away from almost a month of being flat on his back and battling two serious illnesses.  He has been pushing food away for a month.  His blood pressure is in a normal range lying down but sitting up it drops sharply.  He has had no strength and hasn't worked with PT like they wanted.  So, has he allowed himself to get too down in condition to make a recovery possible?  I just don't know.  I do know that it doesn't seem logical for someone to be able to live indefinitely on a few hundred calories a day and laying in bed.  He is drinking some fluids but not 100% sure it's sufficient for his long term good.  My biggest fear for him is that he will do enough damage to his body by further wasting.... but will not just "die" because he is getting enough for his body to minimally get by and then perhaps want to get better... but can't and will end up needing nurshing home care.  full time 24/7 care at home is possible short term, but it does become a pretty big expense when it is a long term situation.. and in a different environment they could be helping him get stronger. 

 

Anyway, I guess I will have a chance to see him again tonight.  I know in the short term my work is going to be understanding but that will not last if things go beyond a couple of months.. then I won't be able to get away as easily. 

momjeans's picture

So sorry to hear, ESMOD.

At 62, my mom chose to stop radiation treatment, and went into hospice care. This was after a rough 2 weeks at home. She wanted to die in her own space, but it just wasn’t doable, for many reasons. 

Hospice care was the most beautiful and amazing experience for not only her, but the rest of our family. 

Wishing you peace with this. 

ESMOD's picture

Thanks and i'm sorry you lost your mother that way.  It's hard to watch someone suffer.  I know I will be glad I spent more time with him now if it truly is his time to go.

ESMOD's picture

Thanks everyone, it's certainly a very overwhelming process to go through.  My dad was very organized and he did give us the gift of a very clearly laid out plan for his death "dad's death file" literally.  He also had all his other affairs in order and easily located and managed.  So, I am pretty much dealing with most of all his business.  My brother has offered to help, but he continues to have melt downs over texts... so I just think he must have too much other stuff going on for him to deal with "petty annoyances".. So, I will handle it.  I feel more comfortable doing that anyway because of his history of getting money from my dad.. I do worry he might start "draining" stuff if I wasn't able to properly oversee it all.

momjeans's picture

My mother was extremely organized, too. She had a “death file” as well with all the paperwork I’d need after her death; She paid for her cremation.

It was still hard - all of it, after she passed. 

And thank you.