Lost my husband Rick, what to expect in the final stage

From everything I have read and heard on hospice, some are still stricly volunteer. I email with a lady in Seattle whos husband died 2 mo before mine. She said her hospice was great, and all volunteer. Mine was thru Multi care. We had the best insurance, thanks to his wonderful boss who kept him on it thru the cancer. So I expected we would get wonderful Hospice also. I was very dissapointed, and I will do a post now explaining a bit more of my Hospice experience. I have trouble sitting in one spot long, nervous energy i suppose. I am 3 weeks out now and still its so fresh, I wake up in the morn with that tape of the last days running thru my head. So I get up and get busy !!!

Kelly, I live in a small rural area outside of Tacoma, Wa (graham) on some areage with my horses and dogs, cats , whatever seems to come up the driveway doesnt want to leave. I am hoping all this work involved in keeping this place going will be good for me. It is a bit overwhelming right now! But it will be good for me in a way. I do love it here and dont want to sell.
Yes, you can change your hospice people if you so desire, I was in the middle of that when Rick died. Ask specific questions like….if they say they offer massage, how often? Rick loved that but they came once (it took them about 2 weeks to get him on the schedule) and then I did not bother to reschedule because they were limited on time and I knew he would not make it . Cancer has its own schedule. Also what about bathing….there came a time when I just could not get him into the shower and it took me 3 days to get a bath person here and then she did not want to do privates (??) It just seemed to be one screw up after another. At the end of life, the toxins have a particular odor, and I wanted him to be clean. There are bath packs you can buy that you warm in the micro and they are no rinse, very convenient. My nurse knew nothing about them ! I had to find out about most of the items from my nurse friend. I wanted to learn about cleaning him, but the bed bath person missed his hands, feet, armpits and did not want to do privates. I did not want to learn from her, altho she was very sweet. That was only some of the experiences, now they lost my FMLA papers (family leave) and dont bother calling me back.
Another thing I would want to ask is HOliday Availabillity…cancer does not rest on Christmas and New Years but it seemed everything was backlogged as far as the service. Ask them , when the going gets tough, how many visits by the nurse are allowed each week. Mine was once per week, and of course he was dead 3 days by my next appointment. I was told when I signed up they would take care of everything. Find out they do and when, get specific. HOw often can they be available if things get rough for you. I thank God I had the family and friends I have ! They came through for me so much. What if I was older, not fit, and had no one and had to rely on except my Hospice team. I would have been devastated, more than the initial grieving.

Kelly, it is probably because they cannot offer much in his case, sorry to say, just my opinion. The apetite loss I dealt with, and it is a big part of it. Toward the end he just was not interested, the body knows when it is shutting down. He had abdominal pain, but not terribly bad. A few oxycodones per day did it for him til toward the end. A couple days before he died he was not lucid….he mumbled alot, but could not communicate, altho he did not seem in much pain. He did yell out ” Get me outta here” over and over until I said “I am warming up the car for us to go, take this medicine and we will get out of here” That is when I began the liquid morphine in the hospice comfort care package. That was the toughest part of this all for me, I thot once I started that, it was the end. It was a terrible last 3 or 4 days, thank goodness I had family and friends. I had a friend stay with me the last night, she had lost her husband to pancreatic cancer just a year before. She was wonderful, with me to the end. She stayed til they picked him up in the morning. Then that vacant feeling comes, when you just cant believe it. AFter 2 weeks I am still there,….thinking he will come home. But one foot goes in front of the other til you have a different past.