Michael was introduced to me through the social worker on the Oncology Floor of our local hospital. I was told I would be working with a man whose health had taken some radical turns in the last three months. First there was pneumonia, then a heart attack requiring open heart surgery with valve replacement and the last – a diagnosis of Non-Hodgkin’s Lymphoma. What I expected, I am not sure however, my first visit was at the least overwhelming for me. He lay in bed pretending to be sleeping and ask for the noise to be turned down (there was no noise). I whispered my involvement in his case and left a contract with him, then went to the main desk. The social worker gave me very little more information only to assure me that his friends would call. And yes he was competent to sign contracts.
As in all my cases I had told Michael I would return in two days and I was determined to do that. I had not heard from the friends, so I returned to see Michael, full well expecting to have no more interaction than the first time. His friends, a married couple, were there this time and he was somewhat more communicative. I was assured by his friends that he did want the Geriatric Case Manager Service which I could provide, as they were not able to continue. According to them Michael was sometimes difficult and frequently was out to figuratively shot himself in the foot. I explained the entire contract again to the three of them and ask them to look it over, call if there were any questions and I would return the next day. Upon returning, Michael agreed to the contract and we talked for a short time. One of the concerns, and at that time the major concern, was to get a bank account set-up so the money could flow in and bills could be paid. I made the arrangements for this with a major bank and had a banking representative come to the hospital to begin the process. And so we moved forward, I met with his doctors and introduced myself and the role I would play in the foreseeable future.
As Michael progressed, he was moved to a nursing home. My visit to this setting showed a person who was very unhappy and was making it known. Frankly, I was glad to see him able to advocate for himself; but I also took in the situation and called his doctor and suggested that this might not be the best placement. Two days later, I received a call from Michael and of course I went to meet with him that afternoon. His brother and sister-in-law were there and the three of us had a very nice visit, however Michael was still in the nursing home. This time I went to the doctor’s office and ask to speak to his doctor. Again I expressed my concern and left with the doctor going over to see Michael and his family.
That was Friday afternoon and Saturday at 10:00AM Michael was back in the hospital. I was called and when I arrived it was very clear that Michael really like the staff on the floor. He was so nice and talking calmly. Even asking someone to get me a cup of coffee, this was introduction to the real Michael. I understood he had literally had the rug ripped out from under him medically. I understood the grieving that would need to take place. I am just not sure Michael did. Through the next three and half years we did this dance of role changing. You see, I had never met Michael the person who was earning his own way in the world. He had a house, a cranberry farm and employment at a local boat building yard. Michael’s home was over 100 miles away from our present location. I learned of his family and, of course, of the family dysfunction – from Michael’s point of view. He wanted to (actually never thought he would not be able too) continue; in the same lifestyle he had prior to being sick. He had made the decision about the heart surgery and the selection of the valve which would not require blood thinning drugs thus allowing him to continue in his active, physical life.
Michael’s cancer waxed and waned, but never went into remission. I was there with him as he had awful tests, pacemaker placement, central lines in, then out, and then port placement. For the first 16 months, he was in a nursing home. Then he needed to move to a less restrictive setting and being Michael he wanted to go home. Who wouldn’t? Working with his family, we found him a place to live close to the hospital and his brother took him home two weekends every six weeks. Through this time, we learned a lot about each other. I learn more than he ever did about me; he was a very proud man with very few people to fall back on. He had been taking care of himself since he was 17 and did well on his own. If something bad happened he knew who to blame and that person would have to fix it not so with cancer.
We were both glad Michael finally agreed to live in the area, as one month after moving into the apartment, he was diagnosed with a medical born infection which would require blood transfusions every three days and IV Antibiotics every day, as it turned out, for 3 months. Moving through the grieving for his life, he would be angry one day and exhausted the next; while trying to regain his strength to no avail. Although angry with many people around him, he was at times angry with me, but never with the staff of the Oncology Floor or at the medical clinic. When the bargaining started I notice it right away, first with the nurses working in the clinic where the blood transfusions were done and then with a Nurse Practitioner in his doctor’s office. This was understandable as she was the one doing the bone marrow testing. My concern was to always keep Michael’s counsel to myself, however, needing to bring some others into a strong loop for his sake. His friends were willing to take what I would share at face value, however his family wanted more and this was difficult. This was the reason and after much discussion I was appointed Michael’s DPOA (Durable Power of Attorney for medical purposes). There was no need to worry about financial as at this point as his creditors were used to talking to me and we just left well enough alone.
The year prior to his death we had a meeting with his doctor. We had discussed this meeting at length prior to going and had a plan. Michael had some answers he wanted (I always believed he knew, but need some validation). I set up the meeting and writing down the questions for him, I had expected he would meet with the doctor by himself. However, that was not the case, although I am unsure of their reasons they both wanted me there. I was okay with this as I had been involved in this type of meeting many times over. Michael wanted to know how this was going to ‘play out’ (his term). Our meeting lasted an hour and fifteen minutes. At this time in his life Michael was 67 years old, and wanting to bring his life together. After the meeting we went to his favorite park overlooking the Puget Sound. The only conversation between the medical office and the park was ‘are you hungry and what would you like to eat’. This was planned ahead of time, as well as if he wanted me to stay or give him an hour or so.
I looked at Michael and realized just how much he had bargained for and relinquish to others, if he could just work things out with his son. As you can see he had moved past his loss of independence, his loss of financially being responsible for himself and his ties to the land (which all held equal value for him). We sat quietly for almost half an hour; and then he said “what did you hear the doctor say?” I have always been front and center with my clients; I believe they appreciate this as it allows them to make decisions. What I had heard was ‘Michael was in need of an additional surgery to remove his spleen or he would die within a month’. We discussed options. And then we discussed what he wanted most of all in his ‘bucket list’. There were only two things he wanted given the situation.
The next couple of weeks were filled with daily medical appointments and more testing. One part of this, that was always amazing to me, with all his independence and strength (and he was both of these to fault) he always wanted me there and would wait whatever it was until I was there. Foolishly, at one point I thought this was because I held his DPOA and he needed to know I was there if any problems arose. I would later learn the truth.
His surgery was uneventful as the surgeon had told him it would be. We already knew his spleen was full of lymphoma and the only new side was that it now had a name T-Cell. While waiting for Michael to come out of surgery, I called his daughter-in-law. Explaining the situation as best I could without giving all of Michael’s life away and asking her if she thought there was anyway the situation with Michael’s son could be at least put away for a few short months. They came that afternoon and Michael was so glad to see his son. This was the beginning of their road back together.
The only member of Michael’s family I was regularly talking to was his brother. Their relationship had been kind of an on again off again through their lives, no real disagreements just not a priority. As Michael’s time was becoming less and less, their time became more and more. It was so good to see them coming together again. The only other wish was for his son to come into the picture more, as this was very slow.
In April 2011 Michael’s health was slowing down. In March he had seen many of his friends from different associations; he drafted a letter to the school board asking to be replaced; he said good-by to one of the friends I had met in the hospital so long ago (she had passed on from pancreatic cancer); he wrote some letters to different people and in general Michael was tying up the loose ends of his life. The last week of April Michael went into the hospital for strengthening. I ask his doctor how long, he said it was hard to say, mostly depended on Michael. Most surprising at this point Michael became very angry with the staff on the Oncology Floor. At one point, just he and I in the room, he said ‘they had let him down, just like everyone all his life’.
On May 2 2011 Michael was admitted to Hospice Care. His family (two brothers and their wives, his best friend, his son, daughter in law and oldest son) was there that evening. I was there and can tell you it was a good time, up beat with so many new experiences being shared around the room. We will never know what Michael heard that night as within one hour after admission, he looked at me and said “we did it – Thank you”. After that Michael was in a sleep induced by Morphine, he died at 8:30 AM the next morning.
I have worked with clients and sat with them at this point in their life, but never saw with such clarity how getting all issues resolved can make for a much easier time for both my clients and their family. You see Michael did not have nearly enough Morphine to create the peace which I observed.
