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Hi Pauline, It’s Patty here. Even though I don't write to you a lot, I think of you every day b/c I keep such a close watch on Lewy thru your journal. I have been so happy to see from the comments that you have found many good friends to walk this hard trail with you. And in doing that they help themselves as well.
All the info from experienced hospice people does help at this point I think. It really helped me, b/c I had never been around someone who was going thru the final stages of dying until my mom was in hospice for a short while before she died in 2004. It's not really the same as it is for you, since her mind was fine, just the body totally worn out. But she did follow almost all of the various steps that are suggested in those info books. I'll give you a few quick examples.
First, she loved basketball with a passion. But during those last several weeks, when the Sweet Sixteen tournament games were on TV, she didn't even want to have the TV on.
She didn't want to see any visitors, even the few close friends who had not predeceased her. She didn't even want my daughter to come from Texas with her new baby boy, Mom's first great-grandchild, who had been born on Mom's B'day just several months before. I don't know if she didn't want anyone to see her in an awful condition (in diapers, with bootees on her feet, with her skin already stretched over her bones like a living skeleton), or whether she simply didn't have any energy left to see people for even a few minutes.
After living in the same place for over 30 years, and resolutely staying there no matter what, she said from her bed in the hospice/rehab center that she didn't care what we did with anything, we could just throw it out in the dumpster.
She didn't talk about dying exactly. She did wonder aloud if she would see my daddy and Schlitzy, the dog they had had when they first married, that they were so crazy about.
She ate very little during her final weeks, tapering down to nearly nothing and just a little water. Finally, not even water. When she had hardly touched even soup for days, she suddenly sat up one evening and ate an entire very large piece of pineapple cake. I was amazed. She obviously enjoyed every bite of it allot and was talking, very perky. It was almost like a party. (A going away party?) It was the last thing she ever ate.
All though she slept much of the time, she suddenly began to moan and toss her head around. I do not think she was in physical discomfort, but it is really upsetting to see them that way. So they gave her the anti-anxiety meds, and it did settle her right down. It's hard to squirm out of a body that you've been in for so long, even if it's a wreck.
So, as I say, I found that she did most of the things that dying people often do. The hospice staff was the most incredible and wonderfully caring group of people I've ever known. Without them I would have been totally adrift. Mom loved them too. It made a peaceful loving atmosphere for her in those last few weeks.
My heart goes out to you day by day. All this takes something out of you that is never quite the same again. And it leaves you with a very deep exhaustion that doesn't give up easily either, even weeks, even months after the journey is over. Be patient with yourself. You're right to stay occupied in whatever way you can. I've always felt that just keeping my hands going on something has helped me thru some very difficult times. It will be helpful for you to move next spring.
And, there is a silver lining, or there was for me. Mom died on a Fri. morning. On Sunday morning I was sitting alone in her apartment, drinking a cup of coffee while I sat on the sofa and looked out over the city of Little Rock, thinking of all the remaining loose ends to be taken care of. I was exhausted, but it was a quiet lovely morning in June. And then I really felt her there with me. I "saw" her put her hand right over mine and she patted it, and she told me "It's all right, sweet. Everything is fine now."
She had lived a long good 95 years, and she thought that was enough.
Like Lewy, my daddy was also a WWII vet, and he was buried many years ago in the Nat'l Cemetery at Little Rock. It is a beautiful place and always perfectly maintained. Mom is buried there with him now. I know "where to put them" is more complicated for you now, but I think Lewy would like to be in the Nat'l Cemetery, and I think your Mom would like for him to be there too.
You are all much in my thoughts and in my prayers. You have a true jewel in Hubbie. I wish I were close by so that I could come give you a break now and then.
Warmest hugs,
Patty