Hospice is a special way of caring for people who are terminally ill — and for providing support to their family. Rather than providing treatment, the primary purpose of hospice care is to manage pain and other symptoms during the last six months of life.
Hospice care is provided by a team of specially trained providers, including doctors, nurses, home health aides, social workers, counselors, clergy and volunteers. Family is often very involved in the care.
It took great patience on the part of the Cottage director and resident manager to convince me that the hospice team had to be part of our plan if Dennis would continue in their care. I felt bullied by their presentation and their intent. It was the social worker who bonded with me as she listened attentively to my concerns. One by one those concerns were answered. And even though I was not totally convinced -- I agreed to the additional help. After all, Dennis was definitely a challenge and it gave the staffers the extra help they needed.
I made it perfectly clear from the very beginning that I had to be contacted before any doctor visited Dennis and before any procedures and/or drug changes were made. I wanted to know the who, what, when and why of anything that was happening. That seemed reasonable because I was in the facility daily and I was available by phone 24 hrs a day. They honored that request and on the occasionally oversight of that requirement -- the situation or individual was addressed immediately. In fact, there was a time when a hospice doctor came to the Cottage and saw Dennis during a routine visit of residents. I was not aware of this visit but saw the billing. Because of our agreement, I brought it to their attention and the bill was reversed.
During the last 6-7 months of Denny's life, the hospice team was an incredible support for the staffers at the Cottage in monitoring and attending to Dennis' care. And an equally important part of their role was the relationship they made with me. I was not the easiest person for them to deal with but they provided an incredible social worker who walked me through the most difficult of times and helped me understand what was happening and why.
One of my greatest disappointments was that in the Cottage (after hospice was assigned), Dennis could no longer be sent to the Institute for Living but instead had to be taken to a new (and closer) Geriatric Psych Unit at the nearest hospital when his behavior could not be managed. This was the most poorly designed facility imagineable for a person with late stage dementia. First of all, with each visit he had to be admitted through the emergency room. Here they were told he had late stage dementia and of his combative behavior. He caused all kinds of "hell" in the ER and it took the stronger men to contain him in a patient 'cubbie' with high powered shots as we waited endless hours for a bed in the unit. Actually on his last visit, it was so bad they lowered the head of his guerney and raised the feet because even after the nurses had administered these shots (that would supposedly take down an elephant) he continued to kick and hit and try to get out of the bed.
Once on the floor, Visitors (family) could only come twice a week for a 2-hour period during the week and on Sundays. Dennis was with seniors who had varying psychiatric needs, therefore, he was forced into an institutional program that required all patients to attend group counseling sessions and other activities that were not suited for his condition. During each of those visits Dennis became even more combative as the staff changed daily and individuals were poorly trained to address his specific challenges. On top of that, the unit was constantly short of care attendants so Dennis was left in pajamas and wet or soiled briefs. On the days I visited, I personally fed him in a group dining area because if he didn't feed himself, he didn't eat. Obviously, Dennis frightened that hospital staff and quite honestly they frightened him. There comment to me was always that he was fine because it was a locked unit and he couldn't get out. That was their answer when I arrived and could not find him in his assigned room or community area. I begged the staff to visit regularly to see what was happening during his stays. They agreed with me that Dennis had to come back to the Cottage as soon as possible.
The frequency which Dennis was returned to that unit increased during the last few weeks of his life. My patience were absolutely dissolved by the insanity and insensitivity to the care provided. On one occasion, I was called to see if I would come to help with Dennis. No one could get him to bathe. And he would not let them put on the giant 'wrap-around' paper diapers. I responded immediately taking the briefs he was use to and feeling good that they had finally listened and would let me help. When I was 'buzzed in' to the locked unit, I went immediately to Denny's room. He was walking out of the shower. He was so excited to see me. "Oh there you are." Just as I was dressing him in his sleep pants a nurse came in to ask why I was there and I would have to leave. Well, as you might imagine, I lost it! I explained I did not break into the unit and that I had received a phone call to come. She demanded I leave citing the rules and I insisted I was going nowhere. She went off in a huff.
So of course in a few minutes, a security officer and a professional looking lady appeared at the door. I looked up and said, "I think I know why you are here." She introduced herself as the managing director over the hospital. I didn't give her time to speak further but interupted to explain all that had happened and why I was there. I explained the difficulties they were having and why it was so important for me to be there and help. She acknowledged my concerns and the situation and suggested only that in the future I call for a supervisor or administrator to express my concerns. As I look back now, I am sure it wasn't as smooth as that just sounded but I got my point across and stayed with Dennis for a few hours until he napped. When Dennis left that facility one last time, I vowed I would not rest until I had taken an educational stand in trying to help units like this make meaningful changes to the care of dementia patients. [Up to this date, I have had no success but I haven't forgotten ... as you can tell.]
This description of hospice care is foreign to what most of us would think of in a general sense. In this facility, it was an extra team of individuals dedicated to management of pain and other symptoms during the last six months of life. I choose to think that even though this was not the perfect experience with hospice ... Denny was not their normal patient care situation. He was a strong, active and otherwise healthy man who challenged anyone caring for him. I can honestly say I had to come to a point of trust! I had to trust no one was going to drug or dope Dennis to control him but there were safety concerns that could not be ignored. Just as my family could no longer stand by and watch the danger in home health care for me (and for Dennis), the Cottage and Hospice team had to take a stand in their decisions to keep everyone safe.
As difficult as this is to write about, it is in direct contradiction to the person Dennis was all his life (before dementia/Alzheimer's). I had met him when I was 15 and found him to be the kindest, most spirit-filled and stable person I had ever met. Just as I said in a previous post (when he beat my brother that Thanksgiving weekend) ... "if I am going to hurt the ones I love, then I should be dead." He was devastated by what was happening and the world was frightening to him.
I will close this post by saying that a few weeks after returning to the Cottage, early one morning at shift change, Dennis was found on the floor face down with knees drawn under him. No one knew how long he had been in that position but he was near death. His face was swollen and his was unable to help them move him. An ambulance was called and he was rushed to the hospital. During that short stay, our doctor determined that Dennis had rhabdomyolysis. As defined in Wikipedia, this is a condition in which damaged skeletal muscle tissue breaks down rapidly. Breakdown products of damaged muscle cells are released into the bloodstream; some of these, such as the protein myoglobin, are harmful to the kidneys and may lead to kidney failure. The severity of the symptoms, which may include muscle pains, vomiting and confusion, depends on the extent of muscle damage and whether kidney failure develops. The muscle damage may be caused by physical factors (e.g. crush injury, strenuous exercise), medications, drug abuse, and infections.
Over the past two years Dennis had suffered many of the causes for rhabdomyolysis. His muscular system took its first big hit when he wandered that long distance for 3 days. Next he had numerous hospital visits due to kidney failure, blood clots and infections that were addressed with IV therapies 21 days at a time. But with each setback, his system was breaking down to the point of no return.
We were advised Dennis would live no more than 7-10 days and we were at a point for no more treatment. It was going to be comfort care for his final days. Scott, Sondra and I waited patiently as Dennis was transported back to the Cottage. I made a quick call to Denny's best friend and he came immediately. The kids and I said our final words for the day and Dennis was listening but not speaking much. Then Bruce walked in the room.
When Bruce walked in the room, he walked to Dennis and reached out with a handshake and his old familiar greeting .. "Hey what's up partner?" Dennis came to life with a lunge towards his friend as they shared a barrage of expletives about who could beat who in the water. The kids and I watched in amazement as these two best friends shared what would be their final words. Within a short period time (just minutes), Dennis leaned back into the bed to rest. He was quiet. Bruce turned to us with a puzzled face and said, "I think I just wore him out with that arm wrestling exchange we just had. I wasn't sure if he was happy or mad at me." Of course we were accustomed to his familiar sense of humor with Dennis. It wasn't long thereafter that the hospice staffers were arriving to take over care of Dennis.
Later after everyone had left, Dennis was given his morphine and he was resting peacefully, I asked him if he still wanted to go see his mother and he responded without hesitation, "yes". I told him I thought it was a great idea and we were busy making arrangements for that to happen. He smiled. Thinking I would have 7-10 more days to say my goodbye, I could say no more. I remember lying awake that night crying softly and praying for mercy. I prayed for mercy for Dennis and myself. I could not begin to imagine watching this dying process for the next 7-10 days. As it worked out, we were called back to his bedside in the early hours of the morning. Before we even got there -- he had passed. He lived only 8 hours on hospice. As difficult as it was to accept, God had answered my prayers. His timing was merciful for Dennis and myself and our family.
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