I didn’t sleep well last night, and that made waking up to another Monday morning less pleasant than usual. I didn’t feel like getting ready for work. I didn’t feel like going to work. No doubt about it, I am burned out. Where I once looked forward to my job, it has now become “work.” Continue Reading »
We have watched my mother’s health steadily fail for the past six months. In December she fell and ended up in the hospital. She wasn’t strong enough to join us for Christmas. It was my first year without MY family for Christmas, and even though Mom and I have had our issues, not having any parents or grandparents around for the holidays was a very sad thing to face.
On New Year’s Eve, Mom was taken from the restorative care unit to the hospital due to congestive heart failure. More dialysis, in addition to the three other times each week, helped to relieve the symptoms. As the days passed, it became clear that she was failing. Her weight dropped below 100 pounds. Her mind was becoming fuzzy. She began to lose control of her bodily functions. She hid her medication. She though that she was on a cruise ship. She thought the nurses were trying to kill her.
I called a meeting with her Nephrologist. I wanted to know what the long-term prognosis was. Would Mom ever be able to return to independent living? The answer was no, yet he still “held out hope.” Hope for what, I am not sure. Her kidneys had not functioned at all for years. She can no longer walk. She is on oxygen, and a million different medications. I’m not sure what his definition of “HOPE” is. She wasn’t going to regain health. What he meant by HOPE was that she could be kept alive with extensive medical intervention so that she could linger for a few weeks in a nursing home. I asked him if anyone had ever considered discontinuing the dialysis. Well, yes. Had they ever discussed that with my mother? Well, no, they hadn’t really thought it would come to this point. They hadn’t thought that she would live this long. (So many of years of medical training, and they hadn’t considered all of the possibilities?) I was shocked. Well, here we were. It had happened, and it was time to make some decisions. What I was looking at seemed cruel. This was no way for a human being to live….and to be kept alive.
The doctor and I approached my mom with the facts. We made it her choice to consider ceasing dialysis. She decided to continue to receive treatment. I was in support of her decision. It was obvious that she needed to let everything sink in. We all needed to buy some time to make the adjustment to the next step. Mom was moved back to the rehabilitation facility and would continue to be transported to the dialysis center three times each week. This was last Thursday.
On Friday morning, I received a call from a nurse. Mom was refusing all treatment. She said that she had had enough. I was at work, had walked out of a meeting to take the call. I asked the nurse to tell my mom that I encouraged her to go to her treatment and that I would be by to talk to her after work.
T and I drove down that evening to talk with her about what was going on. I explained that a nurse had called to tell me what had happened, and my mom said, “They should mind their own damn business.” She said that she was done. She was tired. I felt a sense of relief. I have her medical power of attorney, and I didn’t want to have to make that decision without her consent. I called Mom’s friends to tell them what was going on and asked them to pay her a visit. I spent most of my weekend by her side. It was calm and peaceful. She slept most of the time. Sometimes, she was disoriented and asked if Dad was out in the yard. I tried to get her to drink or eat small bits of food that I felt would be soothing. We watched “Parent Trap.” The old one with Haley Mills.
On Monday, something changed. She woke up demanding to go to dialysis. Her nurse called me. They were under the impression that dialysis treatment had been discontinued. What did I want them to do? What should they tell her? Initially, I told them, no….no more dialysis. Then I stood there wondering what I had just done. Was I denying my own mother medical treatment when she was requesting it? I called T. What should I do? I asked him to meet me at my mom’s room.
She was angry and disoriented. She said, “Well, yes….I am going to dialysis. I will die if I don’t go!” I was stunned. We had had moments of peace over the past few days. I didn’t know what to do. I stood there feeling helpless. She lashed out at me. She said, “I can see by the smirk on your face that you enjoy having this kind of control over my life. You want to pull the plug.” I was speechless. I didn’t know what to do. I didn’t know what to say. I looked at the floor and reminded myself over and over not to say anything that I would live to regret the rest of my life. I looked at her calmly and told her that there was not one thing about any of this that I was enjoying. I told her that she had made the decision. She asked me where Dad was, and I blurted out that he had been dead for two years. I burst out crying and had to turn around. T sat there in the middle of a terrible situation. I remember him talking calming in a low voice to her, but I don’t know what he said.
When I came back near them, and was more composed, she looked at me and apologized. She said that she wished she knew where our relationship had gone wrong. I felt adrenaline flood through my body. Thirty years of wrong. How could we resolve thirty years of wrong? I had been determined to do right, not to let past differences and slights cloud my judgement in making the best medical decision for another human being. I had been kind and caring. All of this came out of the blue, and it shocked me. I have never been so hurt and shaken in my life. I wanted to run from the room, and running away is not usual for me. I wanted to melt. I wanted to cease to exist in the middle of this life of mine. Too much hurt. Too much. I was shaking and crying. I told her to go to dialysis. I said that I refused to feel responsible for making this decision to discontinue treatment. “Go! Please go. You don’t have a plug. I am not pulling a plug!” I left the room to tell the nurse to make arrangements for my mom to be transported to dialysis. The nurse looked shocked. She advised that my mother may not make it through a treatment.
There was another call this morning. This time it was from the Kidney Center. They had been surprised to see my mother show up for treatment. They discussed a feeding tube with her. They discussed hospice care. They suggested discontinuing treatment. They wondered what I thought. After all, I have that damn power of attorney. I told them that one of their own doctors had told my mother that there was hope. Yes, hope for a day, a week. They didn’t think that she would live out the month even with treatment. There was a meeting later this afternoon with all of the Kidney Center staff. They would discuss my mother’s case at that time and call me later.
It was determined that treatment was no longer of any benefit to my mother. She could continue to receive treatments, but at this point, they may do more harm than good. A feeding tube would enable her to have a little more time, but my mother had already said that she didn’t want to go that route. Did I want them to talk to her and arrange hospice treatment or would I prefer to tell her myself?
Tonight T and I went to tell my mother that there was no longer any hope. A few days, a week, a month at best. We entered her room, and she was sleeping. I woke her up and asked how she was feeling. She was groggy for a while, and we three sat and watched HGTV. I didn’t know how to begin this conversation. I was at a loss. T finally began talking. Quietly we explained everything. She just looked at us. What do you say when someone tells you that it’s real, you are now dying? Mom, this is it. There isn’t anything left to do. I told her that I wanted the time she had left to be comfortable and full of family and friends rather than more and more medical care. I told her what to expect physically. There should be no pain. It would be peaceful. (I pray to God.) I asked her if there was anything she wanted.
She asked me if I believed in Heaven and Hell. I told her no, I don’t. I said, “I believe life is Hell enough, what waits on the other side is Peace.”
As T and I drove home, he told me that when I had stepped out to talk to the nurse, my mom had asked him if I was OK. He told her that this was not easy for me. She is all I have left of my family. When she is gone, I don’t have anyone else left of my family. He told her that I was carrying a burden of guilt, because I didn’t want her to think that I was responsible for ending her treatments. She said, “Why would Pam think that?” He reminded her of what she had said the previous day, and asked her not to say such things again. He told her that we would do our best to care for her, and asked her to leave me with peace. I was shocked by what he told me. I didn’t know he would defend and protect me in such a way, and I loved him for being able to say the words that I was not able to speak.