Over the last few years, Edmund has led us to believe that he would soon be leaving this world, and proved us wrong. Now however he has entered a phase that I think points that this time his leave is soon in coming. His Alzheimer’s has over the years of course been worsening, and now he is in its late stages, though he can still communicate with us some. He will respond to my calling him by name, and when I pray with him he also is attentive. He still loves it when I pray the Psalms with him. He loves psalms 23-25, 138, 151, which he answers to a resounding AMEN (!), when I finish each one. After each psalm I say a doxology to the Holy Trinity.
About three years ago he started to have some tumor growth on the back of his neck, just left of his spine, and also another tumor in the throat area. Both were situated in such a way that they did not interfere with his movement, or swallowing. I took him to Dr Carter, a specialist, in taking care of those who suffer from cancer. It turned out that he had Lymphoma, but the doctor did not think it would lead to his death, because of his advanced age. He was 89 at the time of the diagnosis. He prescribed Prednisone, a mild dose to help with the tumors. Which worked so well, that the tumors disappeared totally; much to the Doctors surprise and those of his staff.
Then Edmund started to have a growth on the top of his head, near the back, on the right side. Its growth was rapid, and I made an appointment with the local specialist on skin cancer, a doctor that we often use for skin problems. After looking at the cancer, and noting Edmund Alzheimer’s, he communicated with me his doubts on how to go about removing the tumor. Edmund would not understand what was going on and the healing process could be a problem with him. It would be a large section of skin around the tumor that would have to be removed, and if he picked at it, could lead to further complications. Restraining him was out of the question, it would only make things worse. So he decided to just scope out the tumor, that way the incision would be smaller, and hopefully cause less trouble. So an appointment was made in a week. Two days before the procedure, it was decided that he was two weak and confused to have the operation, and so we cancelled it. We were in a Catch 22 situation, no matter which way we went, it would be trouble for Edmund.
We finally had a doctor come out and scrape the tumor down to the skin. It was done with no discomfort to Edmund, but the tumor came back with a vengeance, and to top it off it developed a bad MRSA infection. We are not sure how he contacted it, but there is community based MRSA, and he could have contracted it from just about anyone who visited him. We use certain procedures when with him now, gloves at all times, and mask, also a very through washing of hands with a special soap that will kill the MRSA, and stop it from spreading. The tumor is large, and bleeds, and we try to keep it covered, but Edmund often tears off the covering. So we sometimes cover his pillow with a towel and change it often. Also his clothing, and bed linens, is washed separately from the others who are living there.
At this time we think the cancer has spread, but he is too weak to have x-rays done, and since he is in his 90’s, and very weak, our main concern is to keep him comfortable. We have started him on pain medication every six hours, and this seems to help. One problem is that we fear that he won’t be able to communicate discomfort with us. For instance he loves his room cold, he can sleep better that way. However when cold he can’t tell us, so we read body language, and cover him according to that. It seems to work. Also with pain; when restless, we take that has his having discomfort, and the pain medication, which is not strong, takes care of that. We won’t use a patch, since he is so little, it may be overkill, literally. However we are thinking of getting his pain medicine in liquid form, and a paste for Ativan, to help with anxiety.
It often takes two people to clean him, and when on call, I am brought in sometimes to help with this. Last night he took off his head bandage, and I was called in because of that. There was a lot of drainage on his pillow, but decided not to re-cover it. So we just changed his pillow case, and put a towel there, to be checked every hour, and changed when needed. He is often in a fetal position, so it is difficult to clean and change him. He can be requested to stretch out his legs, comply, and then very soon afterward forget, and again retract his legs. Fixing up his bed can also be difficult, so I was holding him while Kim was arranging his bed linens, trying to keep the wrinkles down. He was cradled in my arms, clinging to me for fear of falling, almost like an enfant. I was deeply touched by his vulnerability, and assured him that he would not dropped. It must be difficult for him, almost blind, with very little short term memory, not know who, or what we are doing to help him. Luckily he still remembers my voice, so that helps.
He is not eating much at all, mostly shakes, and drinking very little water or other liquids. He is loosing weight rapidly, and renal failure seems imminent, so this time the end is very near. He is peaceful for the most part, and still smiles easily, though he most likely does not know who any of us are anymore. He stills has that smile that everyone loves, and laughs easily, and still responds to prayers and music.
Below is something I have written about him that was requested of me that will be put in a newsletter
I can remember the first time I saw Edmund. He was a little man, slight build, skinny of course, and very quiet. I remember how diligently I had to listen in order to hear what he had to say; he always spoke in a near whisper. There always seemed to be a calm that surrounded him, a silence that flowed from within, that always touched me. His smile often reminded me of the Mona Lisa, enigmatic, never really knowing what he was smiling about. He either knew something I did not know; not very difficult in my case, or he just got away with something, well probably not. I could never imagine Edmund ever doing anything wrong.
He was a minimalist in his approach to just about everything. Less is good; clutter bad, everything neat, and in its place. When he cooked, his cooking showed that trait. All of his meals were simple in the extreme, but each and every one of them was a work of art, at least as far as I was concerned. One of my favorite meals of his was also one of his simplest. He would put carrots, potatoes, and onions, on a large flat pan, and brown them in the oven. A meal that I never tired of, no matter how often he prepared it, when he cooked for us on special occasions, which was about four time a year.
He was a natural artist; everything he did had a certain touch to it that literally left me amazed at times. I suppose he just knew how to place items, just so, that created a balance between them, one shape played off against another….. that was very beautiful, and even restful to look at. He could do something as simple as having a leaf, a stone, and a stick, from one of our trees on a table, but the placement in my eyes was perfect. I don’t think anyone else that I know had that kind of effect on me.
He also had a very dry sense of humor that would often leave people laughing when he did tell jokes, or share a humorous story. His timing was perfect.
His love of music has not diminished one iota. He came from a musical family, and he played the Violin when he was younger. He now likes to listen to music most of the time, perhaps reliving past memories that brought joy to him when he was young. He loves classical, but his favorite is Jazz, with Billie Holiday at the top of his list. He can often be heard singing “summertime” at all hours of the day or night.
At this time he is weakening. He is eating less, losing weight, but he is still the gentle Edmund that I have come to know and love. When he is restless, all I have to do is to start praying the Our Father, or the Hail Mary, or read a psalm to him, and he quiets down very quickly. It seems that the love music and prayer or not diminished with his kind of Alzheimer’s. In fact I don’t think any of the Alzheimer’s patients have lost touch with these two very important areas of life, which I have taken care of.