(from the end of February — early March 2023)
My mother has dementia, and as I’ve written before, it’s a cruel disease.
Every time I see Mom, there is a little bit less of her. For my sister, who sees Mom every week, it is an ebb and flow, some days better than others, with the general trend downward. For me, it is a jarring time-lapse, especially over the last six months where Mom has not been answering her phone or the Google Nest Hub that I put next to her chair so I could call her over video. Leigh has been great about encouraging me to find ways to talk to Mom, even if it’s just for a few minutes.
I flew out to the states in February and spent a little under a week with Mom. I arrived on a Monday night and got to see Mom for the first time on Tuesday. My brother had arrived a day or so before me and it was the first time all three kids had been together since my father’s memorial service over 20 years ago. Tuesday she was all smiles when she saw me come in. Wednesday was more difficult and she seemed at a loss sometimes for what was happening around her.
Thursday was a better day, but when I told her I needed to leave, she looked so sad, even though I told her I would see her tomorrow. You feel like the worst son in the world to walk out at that moment.
The thought of losing Mom forever is hard. The experience of seeing her suffering — physically, mentally, emotionally — is what hurts much more.
A character in a science fantasy series that I read as a teenager featured a mage named Raistlin, who was given great power but had the curse of seeing everything around him slowly die through his hourglass shaped pupils. I feel like that with Mom — that where we are and what lies ahead are only more suffering until the end, and it’s hard to watch that minute by minute, every time I look at her.
Friday was both amazing and gut wrenching — Mom was more present, more conversational, more relational, and that makes the times where she is “gone” all the harder. You know she is there, but not there. Today, we were just watching The Andy Griffith Show together, and I put my hand on her arm, and she looked at me and said, “Normally I have to watch this show all by myself.” I almost started crying right there. And when I had to say goodbye for the night, she was more sad, her eyes more filled with tears even that the day before. I loved seeing my mom today — really getting to see her, but it also tore me apart.
I would like to end Mom’s suffering, but I also know Mom’s beliefs. While Mom has made it clear that she does not want to be resuscitated, or have any medical measures taken to prolong her life, she did not consent to being euthanised.
My final day with Mom I saw all phases of Mom’s dementia.
Initially Mom was highly engaged — smiling, spirited, even slightly conversational. I read a couple of her autobiographical stories out loud to her, and she said they were fond memories. Other days, she hadn’t recognised that I was reading her own writing.
At dinner she asked if the person “who had come in the car with us” was joining us for dinner. I had just wheeled her down the hall — no car. She asked me if I was coming on the trip with them tomorrow. Mom was not going on a trip. Then out of the blue she said, “We didn’t see Elaine,” referring to my friend’s wife, whom we had actually seen on a facetime call just a couple of hours ago. I didn’t even think she could have recalled her name. Mom struggled to eat her soup and then didn’t eat any of her meal. I wondered if she knew today was my last day, and then she told Georgia, the woman sitting next to her, that I was leaving and she was having a hard time with it.
Back in Mom’s room, I put my arms around her and told her how much I loved her, and how hard aging is, and how cruel getting old can be. I told her that I would take away her suffering and switch places with her if I could. She looked at me, held my hand, and said, “I’ve been very lucky.” I couldn’t hold back the tears any longer.
I wheeled her back out into the common area where some other people were watching TV, because the aides had told me that it calmed her. With dementia, the grasp on reality is often worse at night, called “sundowning”, and they had noticed that if Mom is around other people, then she isn’t looking for her parents or my dad or her children.
I left her room, not knowing when I would see Mom next and what she would be like then.