Observations On Strokes and Dementia

What follows is deeply personal. This is my way of processing some of the experiences I have had from my Mother’s first stroke event to present.  It is, in a way personal, and in other ways it’s meant to give those who choose to read it an understanding of what I experienced and observed as my mother’s illness progressed and took from her the attributes that I admired. 

My mother’s first stroke event was a Transient Ischemic Attack (TIA) about 4 years ago. The colloquial term for these is a “mini stroke”. The problem with them is they are extremely difficult to diagnose because they are gone long before any diagnostic imaging can show where the blockage happened - and unless there was bleeding in the area, you’ll never see on a scan. 

That left her with a small amount of speech aphasia.  The aphasia wasn’t particularly severe, it just meant that occasionally she would have difficulty finding the right word here and there.  Overall, there weren’t any other real problems. She continued to do the things that I remembered her doing, and we continued to have good conversations.  

A little over a year later, she had another stroke. This time it was much clearer that it was a stroke, and she spent a couple of weeks in hospital. After this event, she seemed to recover fairly well.  The speech aphasia was a bit worse, and sometimes she would get confused about dates and times. However, this would also be the beginning of changes that I couldn’t ignore too. 

In retrospect, there were a series of clues that would culminate in the onset of something called “vascular dementia”.  Let me explain. 

A few months after the stroke, Mom’s behaviour started to change in subtle ways. She became more disoriented at times, not just having difficulty finding words, but losing track of the time of day, or what day of the week it was. I suspected that she wasn’t eating adequately, and I could tell that housework was getting ahead of both of my parents. We brought in some people to help with things like housework, and making sure there was food available to eat. That kept things going reasonably well. 

But, I would get odd phone calls from Mom on occasion. She would be convinced that the people cleaning the house were stealing things, or she started having difficulty operating the shower by herself - it would get too hot, or she would have trouble turning it off.  Then there was the time she forgot how to turn on the stove - she just stood there staring at the thing and couldn’t remember how to proceed. 

Then, in the early fall of that year, she collapsed.  It looked like another stroke, and to a non-medical professional, it was indistinguishable. So, we called an ambulance. The ambulance took her to the hospital, who determined that Mom’s blood salts had crashed - hard. She had virtually no sodium, potassium, or magnesium left in her body. 

The hospital kept her long enough to re-establish her blood salts, and see that she was reasonably stable. A few days after that, Mom collapsed again. A round of diarrhea threw her precarious blood salts out of whack again. This time, the hospital team started doing a cognitive assessment to figure out where Mom was at. The results were … concerning. She had trouble with things like operating a telephone in an emergency, as well as increased difficulty finding words.  

At this point, the hospital very appropriately concluded that she needed more assistance living than was possible at home.  We moved her into assisted living at the end of the year. 

For the next year or so we got into a rhythm of me taking a few things over each week and making sure that Mom was doing alright. We’d sit and chat over a cup of tea those days, and the other days, Mom would call in the mornings and we’d talk about what was happening. During this time, she was more or less on a plateau. Her symptoms didn’t change a great deal, and she remained pretty active. 

Then Spring rolls around.  Beginning in Spring, her morning phone calls changed character. Things shifted towards more distress oriented content. She started to believe that the staff at her home were “mad” at her, or she would start to muddle events and sequences would get harder to discern. 

Over those same months, I started to notice changes in Mom’s reading.  Books that she would have enjoyed previously became “too complex” to read, or if they contained magic, suddenly that had become “scary”.  The books she would read turned into a small range.  

At the same time some other problems started to emerge. She began to lose a lot of muscle strength quite rapidly. Fluid retention became a problem, and she began to have increasing difficulty walking. 

Conversation with her at this time degraded quickly. Her ability to clearly recount what she had experienced, or even recall what she had eaten for the previous meal, all but disappeared. It was clear at this point that the illness was progressing quite rapidly. 

Other things became apparent.  Her consumption of the treat foods (the food at the home was fine - these were just favourites for her) that I brought in (yogurt, juice, cookies) all but stopped. The word hunt puzzles she enjoyed began to take longer.  

I started to get more panic calls from Mom. These would happen later in the day, and would usually involve me having to go see her to figure out what was going on. Usually it was nothing truly serious, but whatever it was had scared Mom badly.  She became increasingly anxious and scared during this time. 

Then she fell. The first fall was ultimately attributed to anemia. She stayed in hospital for a couple of weeks while they sorted out how she was doing before discharging her back to the assisted living home. I visited her in hospital several times. Those visits were hard. It was clear to me that she was both scared and substantially disoriented.

When she was released home, she was almost bedridden. She required assistance to get to the dining lounge, or to get from her bed to her chair to sit. She was aware of me, but the level of coherence in her communication was getting pretty low. One sentence could switch topics multiple times.  

Then she fell a second time. The second fall was more serious, and resulted in a return to the hospital - this time with a laceration to her scalp which required stitches. When I visited her the first time for this stay, she looked at me and said “I thought you were dead”. 

We talked - or perhaps I should say she rambled, I talked. It was the most unsettling conversation with her I’ve ever had. It was clear to me that she was not just disoriented, but really was struggling to express what she was trying to find words for. That was the last real conversation I would have with her. 

After that point, we learned of the other medical problems that had emerged, and one of them was inevitably going to end her life. I don’t need to go into the specifics here, the medical issues all came back to the same root cause that ultimately was responsible for the strokes. 

In future visits to the hospital, I would find her mostly asleep or barely present at all. I would go into the room and sit with her for a while, but between the medications being used to manage the pain, and the extent to which her dementia had advanced meant that she wasn’t really all that aware of me.

In retrospect, I’m fairly certain that over the last six months of her life, there had been both a series of TIAs that helped accelerate her deterioration. Once she turned that corner in spring, the downhill slide was  rapid and did not level out into a plateau.  She did well for a good length of time after the initial strokes, and had a good period of time where she remained basically healthy and active.  The end, when it came, came quite quickly.