I want to thank you all so much for the amazing amount of emails, prayers, cards, and kind words as I went through this last week and a half since my mom died. You all had so much compassion! I really learned a lot about what it is to be a supportive friend.
The update (about the brain donation etc.) for those who are interested in it:
My mom, many of you know, was a paranoid schizophrenic. I signed us both up to be brain donor's with the Harvard Brain Bank's study for schizophrenia. They need both the brain of the mentally ill patient as well as their family members to study the differences.
Watching mom die was extremely hard. My husband and five of my six kids were there. It wasn't the beautiful movie-style peaceful thing. It was hard, painful, and disturbing. She was so scared. She tried to speak earlier in the day, but it was nearly impossible to understand her. She moaned a lot. She was extremely restless. She had stripped her clothes off as if they were painful. We lightly covered her with a sheet and used it to fan her body to comfort her from the heat that happens at the end. But my children refused to leave. They waited, sang, and sat with us. They were so gentle and kind.
The hospice company was only involved on the last day due to a snafu. sigh. But they were wonderful. They sent us a harpist. She sang and played from 9p-10:30p. The songs were a range of hymns, classical Latin pieces, and Celtic music. At one point the nurse and I both made out the words, "I love you Jesus." This was a huge victory because most of the last few weeks, we couldn't understand her at all.
Mom died at 11:35p.m. on March 1st.
The hardest thing for me to handle was the actual moment of release. What I mean is the moment I had to say, "Go and do it" to the team. I had to have them tell me 3 or 4 times that she was dead. I had a hard time believing it. We all watched her take her last breath. She'd fought so hard. I laid my hand on her chest and told her to let go. And she finally did.
This is when the brain donation team leapt into motion. The nurses at the nursing home followed my pre-set instructions to the "T." They called the funeral home for transport, the Medical Examiner (who donated his time), and the brain bank to prepare them.
There was not a feeling of relief that so many people described. I felt sadness, instead, a sense that she missed so much joy in this life. I was glad she could go to heaven and feel real joy. But I felt cheated that she'd had such a difficult life of mental illness. I felt cheated, as a daughter, that I could never have a normal conversation with her in my entire life. I felt hope that I could have some great conversations with her in heaven. I can't wait to find out who she really is. Can you imagine how long that chat will be? I know the schizophrenia masked who she wanted to be, who she was deep down, and imprisoned the loving mother she could have been.
As a Stephen Minister, I know the stages of grief. But they still took me by surprise. Not the stages so much as one stage. Anger. It shocked me. My anger whipped around me for several days. And it made me angrier that I was angry! Oh brother, talk about a catch 22. LOL, sigh. I'm much better now thanks to the wonderful friends who just listened (which ironically is exactly what a Stephen Minister is for.) I thank God he provided me with such a wonderful support network.
Well, we had a 24 hour window to provide a fresh brain donation to the brain bank. (There are other options, but this is the one that I felt would best serve our situation.) The M.E. arrived and did his procedure from 1a.m - 3a.m. Then a courier (read-taxi) picked up the container, delivered it to the airport, and her brain arrived in Boston at 5 p.m.
I had a terrible scare that bad weather had grounded it in Minneapolis. But it hadn't. Everything went like clock work because it had been surrounded in prayer. People showed up and did their part of the teamwork right on time, others stayed with me, yet others called to help me get over the waiting and the concern that something could go wrong. This was mom's last gift, I thought, and nothing could go wrong.
The Lord did not allow anything to disrupt this gift. The support, the plans, the love. Everyone on the team was really on the team. No one fell behind. To all of them, thank you.
But mom had one more gift. One I didn't expect. The hospice company called a week later. They had noticed some things that weren't the best of circumstances. They wanted my input to help correct the lack of education and conditions in the nursing home.
Because of what mom experienced, and my ability to communicate for her, the people in her nursing home and possibly others, will get some more training. Other folks will have better end-of-life care. Others will benefit because my mom lived. Many from the studies at the brain bank. And many living where she lived.
My children benefit from having the honor of helping their grandma die with dignity surrounded by her loved ones. They had a rough time, but they refused to leave her. This caused quite a stir with the nurses and hospice folks. I didn't know about the stir until later.
The nurses and staff told the hospice company that they were ministered to by the fact that Eva's family surrounded her with such overwhelming support as she died. They all knew how hard it has been the last few years. It was incredibly difficult to manage her meds, diseases, and physical needs because she didn't believe she was sick. She fought everyone who tried to help her. Mom believed that someone was doing all of this to her.
So in the end, the staff felt our family had so much peace and strength, and that we shared it with them. It wasn't something they were used to seeing. (I don't know why.) They felt we had a sense of understanding and reality. But that there was such peace.
No one had ever been involved in a brain donation before. Well, heck, neither had I! But they were all so moved to be a part of the team. And we all did feel like it was a huge team effort. And I am so grateful to them all.
If anyone would like more information about what happens with brain donation, how to put a team together, or you are just curious, please feel free to ask.
We will be taking mom's ashes to Denver. The only thing I figured out after all these years was that she wanted to be buried by my grandparents. I'm glad I will be able to do that for her.
For those of you still caring for family members with long-term illnesses or mentally ill loved ones, may God bless you and give you a sense of purpose in that work. May He give you humor, joy, and peace as He works through you. You will make a difference. Keep going.
If this story helps you writers to deepen a character, gain knowledge, spurs an idea-well then-mom's given another gift:-)
Remember you can find the Brain Bank at www.brainbank.mclean.org or by calling 800 brainbank