Hospice
April 10th, 2008
My mother seems to have moved into a twilight place. She is eating less and less, and sleeping almost all day. The staff at Garden Manor are wonderful, as is Hospice. She is always dressed (which must be an ordeal, since she can’t even stand up on her own) and someone has painted her nails and curled her hair. She is usually sitting in one of the recliners in the common area, which makes me feel better. I had once fantasized that I would take her home when this time came, but I would not be able to take care of her the way they do.
I feel like I’m dreaming. It’s such a cliché, but that’s the way it feels. I have spells when I question our decision to call Hospice. But I’ve come to the conclusion that NOT calling Hospice is a decision, too. My mother left an advance directive, which has helped us to plan her care, but you don’t realize all the “small” decisions that comprise carrying it out. Do we continue the Namenda? Do we stop the Coumadin? What medications and measures are of a mindset that hopes for some improvement, or, at the very least, a warding off of the worst? And does this mean that we are hurrying her along?
I suspect that some people look at me strangely when I tell them that I am NOT going to let her go to the hospital again. As if to ask: “Who are YOU to make that decision?”
Well, I’m sure that my mother would prefer that I and my sister make such a decision, rather than anyone else.
In the meantime, my house is filthy and I’m missing a lot of workdays. Mornings, in particular, are tough. I wake up in the dark—before the doggies are awake—and I wonder how I’ll get through the day. I remember, many years ago, an older friend telling me that it doesn’t matter how old you are when your mother dies—you still feel like a lost child. I felt like this when I was in the first grade, and I didn’t want to go to school—my stomach churned and I thought I was going to cry. I don’t like the feeling, but it reminds me of how deep and physical the bond is—which is strangely comforting.
April 10th, 2008 at 7:33 pm
My Mom was in an Alz Unit only 2 months when she began to refuse to take any food, liquids, or medications. Her doctor could not believe she was still able to walk around. We had just called in Hospice and were to have our first meeting with them the week after Christmas. About 9 PM on Christmas Eve I got a call letting me know she had fallen beside her bed, an ambulance had been called and she was on her way to ER. I live about 3 hrs from my hometown where she was. My brother lives about an hour from there. I jumped in my car and headed that way; called my brother and he headed toward the hospital she was being taken to. I tried to call Hospice for help but I guess because Christmas Eve and they were not yet officially “engaged” no help there (sadly my family’s personal experience with Hospice was horrible) My brother got there just as the ER doctor came in to exam her. Immediately that doc wanted to give her fluids. My brother, a copy of her Living Will in hand, said no. Then my brother called me and we made the official NO decision together. Later he told me all the medical staff looked at him like he was a criminal and told him WELL you know she will die within 24 hrs if you don’t let us HELP her but if that’s YOUR decision …. I thank God every day that he had the presence of mind in that awful situation to say “no that is HER decision” She was transported back to the Alz Unit that night for which I also give thanks because her family was able to spend Christmas Day with her there in her room, a calm quiet private place where we were able to say good bye. I was all alone in the room with her when she took her last breath Christmas night at about 8:00 PM. It was not the beautful scene from the movies and sometimes I sort of wish I had not been a witness but more often I feel blessed to have been with her right up to her final moment and I just know that she is grateful for that also. She is no longer here but she will always be with me.
April 10th, 2008 at 11:18 pm
Deb,
Please know my thoughts and prayers are with you. My experience with Hospice was much like Pam’s, sad to say. Between Christmas and New Year’s is never a good time for any agency that relies on staff, and that’s when my father suffered most, a few days after New Year’s he died.
My father was under hospice care three times. So, you really never know what’s going to happen. He was an incredibly strong man and surprised all of us by recovering from pneumonia and sepsis and I forget what else.
The bonds are as you describe them, strangely comforting. I think it’s the fact that you know, deep in your heart, your mother’s wishes and you are ensuring they are honored. Your mother is incredibly lucky that you love her as you do and I believe she, too, finds comfort in that.
And I had to smile at your mention of getting up before the dogs do. I can’t imagine doing that, it’s always their gentle little yips and their whines that pull me out from under the covers.
Take time to care for yourself. You are in the time of ultimate gentleness with yourself. Leave the house a mess, your job will be there when you’re through (I hope!) walk the dogs, care for your mother, breathe in and out, look at the moon at night, and the birds in the morning. All is as it should be.
Love,
Patty
April 13th, 2008 at 1:55 pm
Can’t think of anything to add to what everyone else has said, except that I am grateful to you, and those who have responded to your posts, for diarying this period of your and your mother’s lives.
You are always on my mind and in my heart.
December 30th, 2008 at 2:52 pm
I spent 3.5 years working in an Alzheimer’s/Long Term Care facility in Utah and I know the difficulties and pains associated with this disease. I personally got to know some great people afflicted with Alzheimer’s and I also became close with some of their families. I’ve seen a lot of resources that help. One in particular seems to be a great benefit: http://www.thecaringspace.com
Please pass this link along to anyone you feel could benefit from it. Thank you for the courage to write about your feelings and to share it with others.