Let's Talk Tuesday: The Road To Dementia

My friend Ernie, at No Small Feet, wrote a post here about her mother's dementia progression. It's a road that we have traveled here, with my mother-in-law, my father, and now my own mother. It's a stressor that can affect the daily lives of caregivers, whether your loved one is in a facility or being cared for at home. I thought it might be helpful for others to recognize some of the early symptoms that we did not realize were symptoms until looking back.

For my mother-in-law, she began losing things around the house. She once canceled all her credit cards, etc. after she had left her purse in the garage, next to the car. She mistakenly poured super glue into her eye, thinking it was her eye drops. Some of the signs, we were not aware of because my father-in-law was still alive. He had Parkinson's, but was still at full mental capacity at the time. He was not able to drive, so she would take him for car rides, but apparently, he gave her all the directions, as she was no longer able to get around the county that she had lived in for 50 years. One Christmas, we arrived and noticed a package on the front porch and brought it inside. It was fudge that her cousin had sent to her, as he did every year. We stood there while she opened it. Then, throughout the evening, she kept telling us that her cousin had sent her fudge, and we must take some home. I think that was the time when we realized that this was more than old age. These symptoms began around 2011.

By the time my father-in-law passed in 2017, she was confusing my husband with his brother. She would often talk to me about her 'husband,' as if I had never met him. She also thought I was her other daughter-in-law. She continuously asked Middle Child what grade she was in (she had already graduated college by then). She would tell my oldest daughter's husband, "It's nice to meet you" every time she saw him. They had been married three years and she attended their wedding reception. Within a few months, she had progressed to not knowing who any of us were. I believe that's common for dementia patients, to quickly grow worse after the death of a spouse. When she passed in 2022, she had no idea who any of us were. She could recite the names of her five children and her former address. She recognized old songs and could sing along, but that seemed to be the extent of her memory.

The first sign I noticed with my Dad was trouble following directions when we were playing a board game with my kids. This was probably around 2010. We moved into this house in 2012 and he got lost driving to it that year on Thanksgiving, even though it was the same exit off the interstate as our previous home. He helped my brother with a home project, but forgot to shut off the water, causing my brother's condo to flood. I think I realized something was wrong, but my mother hid a lot of what was going on. When I cleaned out her condo, I found some notes she had kept, basically complaining about him. Simple tasks like getting dressed and toileting needed assistance. He became less communicative and steady on his feet. By 2017, he was falling for no apparent reason. After numerous hospital and rehab stays, he was put on home hospice and passed in 2018.

My mother seemed fine when he passed in 2018, but she got lost while driving a few places in late 2019, which she blamed on detours. I didn't think too much about it. Then Covid happened and she became isolated, no longer going to church or socializing with friends. Then the weirdness began. (I have believed for a long time that she suffers from paranoid schizophrenia, which is a likely contributor.) In January 2022, she lost her address book and blamed my son, saying she saw him take it at Christmas (he was in Europe at the time and had not been at her condo in a few years). She lost her mailbox key and had various stories about how it happened. She was sending us multiple birthday cards, throughout our birthday month. When I called, she would always tell me she heard someone trying to break in at 2 am, or that her doorbell rang at that time. She believed she had lost credit cards, driver's license, etc. but I was always able to find them in her purse, just in odd places (wrapped in a tissue in a paper envelope). She was missing doctor appointments. The hoarding grew worse, with most food in cupboards past their expiration dates.

My husband and I had tried and tried to talk her into assisted living, but she always had an excuse. She turned on me and accused me of stealing her checkbook register and her wedding rings. The situation climaxed last year when she fell, broke her shoulder and was hospitalized/rehab for a month. I arranged for her to go directly to assisted living. It was eye opening to clean out her home and see all the things that she hid and the nasty notes she wrote about me. Her descent continues. She thinks I got divorced and am now married to her previous doctor. She claims that a plane lands in the courtyard outside her window and delivers the food. And everyone comes into her room and steals things while she is at meals. I have to mentally prepare myself for Cray-Cray Town when I visit. She still knows who I am but is becoming confused on her grandchildren/great grands. However, she can name her six siblings and tell stories about her childhood. Like many, the long-term memory seems to remain.

Oddly, none of my grandparents had dementia, though three of them did not live past 80. While research is still determining causes, I do believe that poor nutritional habits, lack of physical activity and lack of socializing contributed to both my parents and my MIL's dementia. I hope this post was informative to you.

Have you had any experiences with dementia/Alzheimer's?