
Recently my Mom passed away and the most frequent piece of advice I received from family, friends and even strangers was “remember how she was before, not recently”.
That’s hard to do…
You see Mom had dementia, a broad-based term for progressive loss of thinking and eventually a loss of the ability to function due to damage to the brain cells. It’s can be a very slow process that plays out over several years. In Mom’s case, that is what happened.
She slowly transformed into someone I did not know and eventually she became someone who did not know me, her eldest son.
Remembering how she was before…tough.
My Mom lived a good life for a very large percentage of her time on earth [she died at the age of ninety-six]. I knew there were hard times along the way, but we all of us have hard times. That is just part of life. But when those times came, she turned to her small family to help her through, and we did.
I think people who experience dementia in their loved ones may not want to see the disease in the early stages. Denial is the first response that I had. The most common thoughts I had were what is wrong with Mom followed closely by what are we going to do? Let’s leave it at this: she did unusual things from time to time and her conversations with me were not normal [a lack of creativity in discussion and a tremendous amount of obvious repetition].
I suspected loss of mental capacity but I was not sure. I chalked it all up to quirkiness. Mom held on to anything she could cling to, to maintain some sort of normal life, a rigid routine in her home that seemed normal to an outsider, but when I think back on her struggle to be mobile, her trouble with med management and poor nutrition, the signs of dementia were there. Eventually I knew we could not leave her in her home as the problems progressed; it was just too unsafe and her health was compromised.
Moving her to assisted living close to my home was a stopgap measure. It could have been ok, but she never really adjusted. Most of her three years at her new apartment were full of anxiety. She worried about how others saw her and I knew that many saw her as suffering from dementia [they told me that on a regular basis]. Others at the home had the same problem but Mom was intensely focused on herself. That is not abnormal. After all, she worked hard to have a rigid routine at her home that masked her problems and now she was surrounded with strangers who were judging her and very little control over her routine. She tried to establish herself, but I had multiple messages from qualified staff that the dementia was progressing.
She was struggling to be herself and was slowly turning into someone I did not know, until October of 2025. That is when a perfect storm hit her ninety-six-year-old brain. A severe UTI, hypoxia and eventually sepsis landed her in the hospital. I visited her every day and in conversing with her, her imaginings were unbelievable. I played along because I did not know what to do. One month of rehab did not work and we had to face the awful choice of a putting her in a nursing home. She needed help with basic needs of life.
No nursing home is perfect but the one that we placed her in was good. They had lots of staff and they were always working and caring for their patients. Mom got the attention she needed and I was never shocked by anything I saw on my weekly visits. The shock came from Mom when it was evident that she no longer knew me. I think she was not afraid of the strange visitor who spent a couple of hours every week with her, but she would look at me and not speak. One day I picked up a family picture and pointed to me in the picture. I said “that’s me” but she just stared at it. No response. People have said to me “That must have hurt.” On some level of course it did but on another level, I knew that Mom had very little cognitive activity. She could not help it. At a care meeting I brought the subject up with the staff and they said “No one is sure; no one knows what is going on in Miss Patsy’s brain.” I never took this situation personally.
Mom settled in to her nursing home routine and I settled into my weekly trip to visit her. It took most of the day but it was ok, until one day I got a phone call on the way to her home: it was my brother and the message was simple. “Mom died this morning.” To be honest, it was not shocking but when a call like that comes, it is still causes one to pause.
The next steps were very predictable as we made funeral plans. I knew I had to speak and I did that. At the visitation I got a lot of “remember how she was before, not recently.” Mom did not look like Mom at her funeral. Dementia took its toll on her body as well as her mind, but we got through the day. We all did.
I am not at the point in my life where I can live out the advice I was given by so many, the “remember how she was” advice. I am recalling the number of professionals [knowledgeable staff members and a pastor of two] who told me I need to let go of the past, that past when I was tried too hard to help. I made so many mistakes, trying to fix Mom. Trying to run to her aid when she made phone calls, screaming “HELP!” into the phone. Trying to explain that it did not present a health threat to take an ibuprofen for a small pain [she was scared of every extra pill]. Driving to her apartment to find her glasses or her hand cross [she was always losing that in her bed]. Staff said “Don’t come. Let her figure things out on her own.” Toward the end of her three years, I finally caught on that most of the crises she experienced were caused by anxiety brought on by something that was not major at all, but I still wonder about my responses to her needs. I know I did too much and in doing that, maybe I made things worse.
Then the hear the advice in my mind that I cling to today. “Let it go; you did what you did out of love.” I know I can’t go back and do it all over so the best thing for me to do is leave it all in the past. Of course, I can look back and see my errors. The old cliché “hindsight is 20/20” is very real, but there is a big difference in seeing my errors and being able to do anything about them. I can’t do anything about them except have guilt and regret. I can’t believe Mom would want that for me.
So right now, I cling to this thought: “Mom, I did what I did because I loved You.”








