What that means is that we have someone to call whatever comes up. A Hospice Nurse will stop by a couple of times a week. We have added one day a week of having an Aide to help with shower and hair. Mary Ann loves current Bath Aide Zandra, so we will continue to use that paid service. All the Hospice costs are covered by Medicare.
The Hospice Nurse who enrolled Mary Ann today was already helpful. Mary Ann declined so much in the last few days since we took her off one med (Amantadine), that I thought we should start it again. Because these are powerful meds, I didn’t want to do it without professional advice. This is Sunday. Nurse Jennifer contacted the Hospice Pharmacist and confirmed that it was all right to restart the med. The most obvious change was the clubbing of Mary Ann’s hands, rendering them useless — in four days. We are all hoping that her hands will return to functionality when the med reaches the therapeutic level in her bloodstream. There are no guarantees that she will regain what she lost.
Mary Ann was a little more responsive this afternoon. She was up while the Hospice Nurse was here, and she responded appropriately a few times. She has been sleeping much of the day, but up for breakfast and to get dressed, as well as an hour or two after the Hospice Nurse left. She was actually lying with her head down and her eyes closed, but at least she was out of the bedroom. She ate lunch, the usual half sandwich, chips and a Pepsi, followed by a good-sized bowl of Buttered Pecan ice cream. As hard as it is to hold her head up and feed her at the same time, I am cherishing every moment we have together.
She has not yet eaten supper. I have been going in to talk with her every half hour or so to see if she is hungry or wants to use the bathroom. She finally got up to eat at about 8pm. She ate a substantial supper capped off with a small Boost and ice cream shake. The Boost should help assure adequate nouishment.
As the evening has worn on, it is beginning to appear that the Amantidine is a very problematic medication. She is now very alert, unable to sleep, doing some hallucinating, and when she was in bed complaining that she couldn’t move. She is up and in the living room watching television, sitting up and it is 11:15pm. There is no sign she is slowing down — I take that back. She just decided to lie down in bed. I don’t know how long that will last, but she has been sleeping most of the time for almost five days, so I guess it would be no surprise if she is up many times tonight.
It is tiring be be jerked around so much of the time by medications that wreak havoc with her functionality. Sometimes they work, sometimes they don’t. Sometimes they do exactly the opposite of what they are supposed to do. Then in an hour or a day or a week, they start doing what they are supposed to do — or not. I will wait to see if her hands open and resume usefulness. If they don’t, I will talk with the doctor again about the possibility of removing it. When looking at side effects, Amantidine’s list contains very many of Mary Ann’s problems. Stopping it seemed to result in the clawed hands and weakness that does not allow her even to assist in a transfer, let alone walk, even with assistance. Today after restarting the Amantadine this afternoon, it has seemed to produce more strength and alertness, sort of bringing her back to life. Of course I can’t be sure the medicine is causing all the changes. It is just that the changes seem to associate directly with the times we stopped and then started again the Amantadine.
Even the professionals, Doctors and Pharmacists can’t help very much since people don’t always react in the same way to the same medication.
On the positive side of taking the Amantadine, if it helps with her alertness and ability to communicate, that will be a very good thing in the next few weeks. Some of Mary Ann’s friends and family intend to come and visit. They would appreciate being able to interact meaningfully with her.
Some readers have asked about the time at the Retreat Center — how it went. I have already written about the two evenings. The day Friday was wonderful. It was 70 degrees and full sun all day long. Thursday night, when heading out to watch the sun set, I was spotted by a deer, who headed over to be with ten more deer. I watched them for a long time.
During the day on Friday, I walked at a leisurely pace along the path that wanders back and forth through a large wooded area. The moss on the path was in its new spring shade of green. The trees were budded out ready to burst open with flowers for leaves. There were birds to be enjoyed. There were some I couldn’t identify (not unusual). Even though they are common, the Red-Bellied Woodpecker that doesn’t have a red belly, and the Yellow-Rumped Warbler, that does have a yellow rump are just fun to call by name.
I did see something out of the ordinary. It is what one of the staff there has dubbed the Mutant Armadillo. It is certainly an Armadillo, but the largest one I have ever seen, dead or alive. I suspect it would take five or more of the ones that are routinely spotted on the side of the road with their feet in the ari to match the weight and size of the monster I saw.
I sat for a long time on the three legged stool in the fartthest corner of the property I could reach. I read Psalm 104, a great description of the creation and all that’s in it. Then I read the a few chapters in the book probing the implications of physics in regard to the presence of God. It was a good grounding for me as we ride the roller coaster we are on here at home. I did take a moment to phone home from that place. I have done that on the last few retreats. It helps me keep the world of prayer and meditation connected to the day to day reality.
I continue to be overwhelmed by the words of support through the electronic media. There is no chance to feel isolated and alone when so many are thinking of us and praying for us. Thank you all for that.
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March 8, 2010 at 6:33 pm
Peter,
You both are in our prayers. You offer a wonderful ministry and have a great blog site. Thank you for your inspirational journey in faith.
Paul Hegele
Louisville