Hello out there: on this 09/09/09 day
Life continues at a pretty good pace. Our new full-time nurse, Stacy, appears to be just what we have been waiting for since we joined hospice: warm, friendly, competent and reliable. She brought some new ointments to apply around my feeding tube and they seem to be working. The soreness has been reduced considerably in just two days. She also stocked us up with tape and gauze sponges. With my feeding tube portal leaking as much as it does, Marian often has to change the bandage 4 or 5 times a day. It is important to keep the area as dry as possible to reduce the irritation from the highly acidic stomach fluids.
We still have some kinks to workout with the delivery of supplies. It is not the nurse’s fault, but rather the fault of the “system”. They failed to deliver the feeding bags for my tube feeding yesterday, so today we are falling back on bags that we washed out “in case of emergencies”. We should have new bags by tomorrow. Marian is gradually increasing the percent of high fiber diet in to my feeding. There is some indication of improvement in my system but it will take time.
On Friday, Judy McQueen, a member of Marian’s “Swimmin’ Women” group conducted an oral history with me using an interview format from a book written by William Zimmerman (no relation, but that was my father’s name). She dropped CD copies off yesterday and it turned out well. Judy is an excellent interviewer. I now have another “keep sake” to pass on to posterity.
I went to the Saturday morning AA meeting again and this time I talked about applying the principles of AA to my current status. I hope I did not frighten off too many people. Most folks don’t like to hear about death and dying. In future meetings I think I will focus on my early AA experiences. While I did not relapse, those first years, they were tough for me. I describe my situation as maintaining “white knuckle sobriety” and in place of the serenity that is supposed to take over once you have truly accepted the fact that you are an alcoholic my state of mind was more like “frantic tranquility”. But sobriety did prevail over the years, but it took a lot of years for me to achieve the goals of the Serenity prayer.
Aaron and Marion Galonsky came over again on Saturday afternoon and we shared a lot of our personal histories as academics. Aaron is writing an autobiography of their marriage. He still has a remarkable memory. He was born and raised in Brooklyn and loved Manhattan. So we had much to talk about. He is going to do some of the early inquiries for us concerning the memorial service.
We had a good session with the Forum group on Sunday, we are still discussing the issue of Food Inc. and related articles.
Monday was not one of my best days, but it picked up after Ann Andrews, an assistant pastor from the UU church, came for a visit. She is a hospice worker at the Lansing Hospice where I plan to spend my final days (assuming I cannot spend them at home). Ann is a delightful woman with much empathy, so it is easy to share joys and sorrows with her. She is still trying to get a small “end of life issues” discussion group going at the church. She was in an automobile accident about a month ago and is just getting reorganised.
Tuesday was a busy one. Did my mile walk at the MAC with my trainer, Ed. Had to go to the eye doctor for my one month post op (cataract surgery) evaluation and to get measured for new glasses. It will be wonderful to see clearly again. As it is I can read 14 point type without glasses, but my distant vision is a little fuzzy. With the new glasses I should be able to read the scores on the TV and the writing when it is on mute. The day was topped by a visit from Mary Voelker and Paul Slocum (UUs). Both of them had lost spouses so they were well tuned to the issues that Marian I like to share with people who feel comfortable with the topic. They may join Ann’s discussion group.
The day ended with a good visit with our nurse, Stacy. My wound is making good progress.
Today I have an appointment with the dentist to get my teeth cleaned. No sense of going to heaven with cavities, or worse yet, developing a tooth ache in these final months.
We are looking forward to a busy weekend. Latte is dropping Ethan and Quinn off on Friday evening. They will be with us on Saturday while Latte plays in a golf tournament and will probably stay until Sunday. Stephanie and Ted arrive on Saturday evening for a four-day visit. Fortunately we have plenty of bedroom space to accommodate all.
I think I am adjusting to my new level of gastric and abdominal discomfort. It is not painful, just a chronic reminder that all is not well and not really getting any better. But we go on with optimism that we can manage whatever comes along. Because of the inflammation around the feeding tube entrance in the skin I cannot bend over to put on my socks and shoes, so Marian has a new task added to her already long list of things to do for Bob. She is fantastic.
I am adding another note from Living in the Light of Dying
Gifts Given, Gifts Received
Many people dying from terminal illnesses choose to search for gifts in their conditions. This goes beyond making lemonade instead of bitterness. It involves searching for any and all positive outcomes that flow from facing death with dignity. We look back on our lives, or the life of the one dying, and find treasures that have meaning for the person’s life. It helps us cope with the loss to come.
Do you or someone you know look for the gifts? Does it help? How? Would you like to know how a person could make that choice? As a caregiver or one being cared for, have you been the beneficiary of such a gift? Have you been the gift giver and, if so, how did you present your gift.