Living with my mother’s dementia

My mother was quite the adventurer during her life. As a Navy spouse, she traveled all over the planet and enjoyed socializing and meeting new people. She volunteered, took art classes, swam laps daily, collected art, and did some scuba diving.

After my father died, she still lived a full life and used to email her sister daily. Nothing too lengthy, just a little, “hello, how are you?” Mostly they chatted about family stuff, what their plans were for the day, etc.

Occasionally, mom needed some tech support from me, but not too often. When she had a question I could go over to her apartment and assess the issue. Usually it was something related to an upgrade or a minor operator error. I even wrote up a little cheat sheet and taped it to her monitor. This went on for years and everything was fine.

One day mom called to tell me she couldn’t figure something out, so I went over to her place and asked her to show me what she wanted to do. I was surprised when she told me she didn’t know how to get to her email. I could see nothing on her desktop had changed. If there is a “start date” to this story I guess that was it.

At this time, mom was in a very nice assisted living facility and had lots of friends. She was quite active, she organized a walking group, and loved to go on the scenic bus rides her facility planned regularly. The staff was wonderful and treated her like their own grandmother. I always felt she was safe but I started noticing she was forgetting people who should have been familiar. Most of the time I was able to brush it off as just old age (she was in her 90s already) so I didn’t worry.

It got weird for me when we had a visit from my niece, along with my niece’s son and her mother. Granted, the young man had changed quite a bit in the last 3 years as he was now a teenager, but after they left, mom asked who “those people” were. They were my mother’s granddaughter and my brother’s ex-wife.

I believe the changes happened more rapidly from this point forward. Our daily phone conversations reflected that her cognition was declining and then the day came when mom asked me how many children I have. That surprised me too since my son was 27 and he had been very close to his grandmother.

My husband was the first real “casualty.” One day he and I went to see her together so he could fix something in her room. He went about his repairs, not talking a lot so he could focus. Mom called me over and asked, “Who is that man?” We had been married almost 10 years at that point and she loved him like her own son so this made me pretty sad.

The timing worked out that we were able to move her into the memory care section of her facility and, again, the staff was wonderful. She often asked me when she was going back “home” but I was able to tell her that this was her new home and she usually didn’t take it any further. She had a good friend who, coincidentally, moved into Memory Care at the same time and her room was right next door. Mom did remember her and the two were inseparable much of the time. They even joked about their mutual memory loss so it was comforting to me that she had companionship.

What I found most difficult to accept was the thought that my mother, who had traveled the world, might someday forget everything she had done. Fortunately dementia starts by erasing the newest memories and leaves the older ones mostly intact. During my weekly visits, I began keeping conversations to past events and stories. I could ask just about anything about an event or a person from 50 years ago and she remembered with perfect clarity.

For years, I had been keeping up with my mother’s sister and her daughter – my cousin. My cousin emailed a picture to me of the old family home in New York so I blew it up to 8×10 and framed it for mom. I was so pleased with her delight at seeing the picture and she pointed out the window to their bedroom and the sun porch. I vaguely remembered the house, so we had a lovely time with me asking questions and talking about the Thanksgivings we spent there. I found some other older family photos and had them enlarged too. Doing this was almost more for me at that point since these were such happy conversations.

Her memory loss began speeding up noticeably to the point where she would ask me to tell her “everything.” When I probed a bit, it turned out that she had no idea about my personal situation, nor that of my brothers. She thought I was 15 again and that her granddaughter had just been born. There was no point in correcting her over the phone because when I went to see her she knew I was an adult. If she did forget something obvious I could just make light of it and move on. I guess the blessing of dementia is that the person doesn’t remember that they’ve made a mistake.

What made me sad now was on my daily calls to her, she would often say how long it had been since we last spoke and that she missed talking with me. She had a catch in her voice and I worried that she thought I had forgotten her. I would lie awake at night with this thought nagging at me and frustrated that there was nothing I could do.

Mom also suffered from multiple urinary infections like older women often do, and each time she lost a little more of her memory. According to what I’ve read this is very common that the person will have an altered mental state with a UTI, but she never would come “back” completely after she’d had her course of antibiotics. She was hospitalized twice when the UTI went blood borne and that was miserable. She was so confused and wanted to go home. The first time she was hospitalized, my husband was able to stay with her so she wouldn’t keep getting out of bed. I was working at a fairly high-pressure job and he was self-employed, so we were able to tag team with visits. The second time was in 2020, the time of COVID.

When I found out she was being sent to the hospital, I made a few calls and found out that I would be allowed to see her since she was a dementia patient and they were allowing one support person. This was one of the few benefits of her dementia diagnosis. Due to COVID, I hadn’t been able to visit her care facility so I jumped at the chance to go see her. I sat by her side for 3 days, until they decided to send her home. After that, her health went downhill so fast we decided it was time for hospice care. After all, the staff at her facility were already overwhelmed and she needed a lot of attention. Eating and using the bathroom required assistance and she was unable to move around much anymore. She stopped eating altogether after a couple of days so hospice made sense for her.

It was right after we started hospice that I was able to see her again. Hospice patients are allowed visitors and once again I spent time with her and held her hand. The last time I saw her, I talked with her, told her I loved her and squeezed her hand. She was non-verbal at this point, but she squeezed my hand back. I know she was aware of my presence and I rethink that moment often. Later that night I got the call that she was gone. She was free at last.