A Visit With Mom

I walked into Mom’s room and knew immediately that it was a good morning. Despite her pale color, Mom’s eyes were open and clear, and she smiled broadly at me. “Good morning, Linda!” she greeted me with enthusiasm from her bed. She knew it was morning, knew who I was and was happy to see me. That is not the reception I always get. Thankfully she reliably knows who I am, her daughter, but more often she can barely keep her eyes open, and her speech is slurred – a product of the various illnesses, including dementia, she is living with.

The unpredictability of her condition confuses me. I wish I understood it better. I try to emotionally prepare myself for whatever the visit will bring, but it is hard. The variability also makes it difficult to decide what to do about her care. Do we continue to aggressively preserve her life, or do we begin to let her go? I believe Mom’s life at this point is largely sustained by the medications she takes – a high dose of diuretic, as well as heart and blood pressure medications. On the visits that she is foggy and lethargic, spending most of her time sleeping, I wonder if we are doing her any favors. Although she will never fully be herself, on mornings when she is alert, when she is more connected and engaged, then all the medicine and effort make sense.

On this day Mom’s lucidity is a double-edged sword. We enjoy conversation about our family. She is entertained when I read a chapter from Mel Brooks’ autobiography. She listens avidly to his experiences during World War II, which bring back her own memories. But, on the flipside, she is painfully aware of her limitations. She ruefully tells me that she can’t buy the little things she likes to have for her grandchildren and great-grandchildren when they visit because she can no longer go out to shop. She shows deep frustration when she has difficulty getting up and walking to the bathroom. The effort leaves her breathless. It is a titanic struggle to get out of bed (despite having a hospital bed): to sit up, shift weight to her legs and shuffle the few steps to the toilet takes major exertion. And that is even with the assistance of her aide. Given that she is on a diuretic, the need to go is frequent. When Mom returns to bed she is clearly dismayed by her dependence on others and her inability to be in control of her bodily functions.

As the day wears on, Mom gets more confused. The energy and alertness of the morning give way to weariness and confusion. “Maybe they will send me home tomorrow,” she says to me. “Mom, you are home.” “I am?” She thinks she is in the hospital. She is in the same apartment she has been in for the last six years.

I point to the pictures that adorn the room. I show her the table that sits in the dining area just outside the doorway to her bedroom. She nods but then goes on to tell me about how when she was in the Air Force hospital in Texas after giving birth to Steven, they were in a barracks style room. They had to line up to use the bathroom and, “what did I do?” she asks me. “I don’t know.” “I fainted.” She goes on to tell me a convoluted story about them forcing her to get up, but then they put her to bed, and she heard her Aunt Bess in the hall loudly arguing that the nurse should take better care of her. “She made sure I had a silver pitcher, it wasn’t real silver, it was probably silver-colored but that’s not the point, with cold water. Aunt Bess was something.” She was rambling a bit, I thought maybe she was conflating several different experiences. It didn’t matter – I just listened. Then she said again that maybe she would get out of the hospital soon. This time I didn’t try to correct her.

I was getting ready to end my visit. We had talked about the weather forecast, which called for a snowstorm. I told Mom that I wanted to get on the road before the weather turned. She agreed and told me if the roads were bad not to come back to visit the next day. “It isn’t worth taking the chance.” “Thanks, Ma. I’ll stay safe.”

I had no intention of coming back the next day and earlier in the day she knew that. I was going to my apartment in the city to wait out the storm and then drive the rest of the way home to Albany. Mom knows that my house in Albany is a 3.5 hour drive away from her – well, usually she knows that. Depends on the moment.

I walked out to my car reflecting on the visit.

I know what I would want for myself. I firmly and passionately believe that I would not want to live the way Mom is living. I would prefer to stop the life-sustaining medications, take morphine or whatever would allow me to be comfortable while my heart and breathing ebbed, and say my goodbyes. Let nature take its course. Mom’s doctor has said that it is a legitimate, ethical decision – to stop Mom’s diuretic and other meds, make her comfortable and let her go. Though we have made the transition to hospice care, we have not discontinued those essential medications.

Mom is DNR and that decision was made with her full knowledge and consent – she was quite capable of understanding what it meant when we did the paperwork many months ago. I am her health care proxy, but we did not discuss this current scenario. I can’t in all honesty say I know what she would want. If I did it would make this much easier. I comfort myself with the thought that she does not appear to be in pain. Her activities are severely limited, her ability to engage in conversation is variable, her energy is negligible, everything is an effort…is she taking pleasure in her existence? Sometimes, but at best it is a small portion of the day. What is the right thing to do?

So I confer with my brothers and we decide to stay the course…for now.

There are only two things I know. I don’t want this for myself. And, there is no objectively right thing to do. No matter how much I rack my brain, or gut, clarity does not emerge. I need to make peace with the path we are taking and stop ruminating. One way or another, it will resolve itself in time.

Note: I wrote this painful post because writing it helped me process my thoughts. Instead of having a jumble of emotions and images, I understand myself better. I share it because I imagine others may have gone through, are going through or will go through this journey. I think it is important that we talk about end of life choices. Perhaps it will spur conversation in your family.