Hospice caregiving sucks. Oh my
Somebody give me a kick.
Damnit, Ooffda, shit give me strength.

It may indeed suck John but you and Joan are up to the task.

Hang tough bro.

I did that for my mom.  The more busy I kept myself the better.

I feel for you.

gonna have to make some assumptions here...comes from the heart and no offense intended...

sucks?, oh yeah...

before, I couldn't imagine being able, after, I couldn't imagine not. one final gift after 49 years of gifts for me, it was the least I could do.

just being there was a joy(midst gut wrenching trauma), and yes, for both of us (no irony there, I have memories of doing what had to be done, she had the comfort of her boys (my brother and me) doing for her, and so well deserved).

now reality, cuz 24/7 is as real as it gets. one of us was there most of the time. when we couldn't be, we hired a live in nurse, a small respite since the service, while expensive, was frustratingly non-personal.

on the complete other end of the spectrum were the hospice nurses. they were also regular visitors. God did not create a creature more professional, compassionate, caring, funny at the right time, and cognizant of the whole family's needs than these angels. oh my...

what I realized early on was that getting burned out would be impossible to recover from. I took measures. behind the house was a small patch of wetland/woods. once or twice a day, when Ma was sleeping and I knew safe, I would go there and watch the birds, sneak up on the raccoons, smoke way too many cigarettes, drink a beer and sit and cry...then pull myself together and go back in refreshed.

when her friends came over, I was the host with the most. if I could read the signs that they were willing to stay and just be there, I would ask permission, then sneak out to shop for supplies..God bless 'em, there were more than a few willing to do that...

what I'm trying to say and I know not if it is of any comfort, is that sometimes you just do what you gotta do...I was blessed with a Mom (and Step-dad) who, at the end of their lives, needed me to do that.
it was an honor to be there for them, no regrets...

you have my thoughts and prayers, I know you have the strength...

Best,

Jon

Been there, John.  It's one of the hardest things we do for the people in our lives.

It says a lot that you and Joan are the sort of people who will do what you're doing.  Many won't--or simply can't.

Wish I had the right words... but there's nothing adequate that I can say.

We're thinking about you and your family.

All the best to you,

George

Thanks again ...It sure helps having you all here. It's like having an armored tank battalion for back up.
The last month has been quite challenging. Hospice dropped the ball and did not contact any of the family. We were there certianly, however the senior center and hospice did not have ANY communication with Joan or I until I kicked the crap out of all of them Friday. Her mom was placed on hopsice on the first of the month. At that time she was stable but worsening. Since then she has wasted to 90 lbs. and has not eaten or passed anything on the other end. She was being stoic and Joan was in denial.
Joan was under the impression that she would possibly come out of it.
I found out after goading all involved up there that she maybe had a week left. Havent been that angry since the last time. Today my sister (who has voluteered  for hospice for many years in the past)and I have a meeting with the idiots. 
Time to call the ombudsman. A hospice program that doesn't talk with the family. That is just #$&^^$#^%^&*$&( up their $$^&#. Boy if I had a hammer.
I you feel like please send a card.
Fera Swarthout
Central Montana Senior Center
308 Wendall Drive
Lewistown, Mt. 59457

or
thebbz
410 7th Ave N
Lewistown,Mt 59457 and we'll get to her.
Oh what a day.
LYG's
thebb

Dear John and Joan,
Another one who has the t-shirt here.......the most thankful/thankLESS job you will ever have.....it's a rough road..when to call in Hospice..when to kick their butts into gear, how much attention.soo many questions...so much indecision. WEe FINALLY called Hospice in 10 days before Mom died. I had been there 8 hrs a day, then 12, then 16......my Husband asked one night if there was someone who could stay with Mom while we had a quiet dinner together-I melted down.caught between my dying Mom and my loving husband, it occurred to me, these were the times when I NEEDED help. We hired the night Nurses, I spent the days with her.the QUALITY time. Hospice helped with showers, brought in housecleaning staff, gave me intelligent, thoughtful advice, gently made me aware of the fact that Mom was NOT "graduating" from Hospice and the end was nearing. They helped me keep her comfortable, advised her Dr as to what was happening, and, as Mom slowly slipped away, gave her grace and dignity. Mom spent 2 days seeing everyone she knew..friends poured through her room to see her, and she would greet each one with a smile that lit up the room, a memory, and, as they left, she would  tell them how happy she was that she could say good bye to them. I wish everyone's experience were as good as mine-sadly, it's not.......... but, John, important here is this is HER passage. Allow(or insist) Hospice to take care of the things you and Joan cannot, find time to be alone....and alone together. Make quality memories with Mom when you can....but let the professionals do what they can do for her.
Mom used to wear a butterfly in her chair. The morning she died, as the sun rose, I went outside for some air,,,,,,and, even though I saw it, I'm still in disbelief.........as I looked up into the sun, Monarch butterflies were all over the place.........we let Mom go to a better place.....and now, she was everywhere!
Joan, it's hard to be left behind, but John is there, and sometime, hopefully sooner, rather than later, your fond memories will replace the pain of losing her. It's been just over a year for me, and it's starting to get as bit easier............
Hang tight, you two, and hang together.........
My love to your MOm, and safe passage..................
Huge, tight hugs 
Cathi