I first learned of dementia when I was a very young child. My clearest memories of my maternal great-grandfather have to do with him calling me by my brother’s name & referring to my brother by my name. My memories of him actually make me smile. I remember him doing what I thought were such silly, funny things. I remember my mom telling me that he had dementia.
Years later, I saw it again in the mom of my step-mother. That lady had gone strong until she was around 90. Then, dementia / Alzheimer’s struck her. She reached the point that she didn’t know anyone; sadly not even the children & grandchildren that I knew she dearly loved. She stayed gentle & kind; but everyone was a stranger.
Around the same time, I gradually witnessed dementia creep into the life of my paternal grandfather. In the early stages, he just seemed to have spells where he would get a little confused or forgetful, but hey, he was getting older. Then, he had a couple of episodes where he thought almost everyone was his enemy & he was ready to physically fight; even with his gun & the collection of knives that he had crafted over his lifetime. That was the point that his weapons had to be removed. Next came the spells where, honestly females needed to be aware & careful if they were alone with him. During these times he had no recognition that some females were his family & he thought he was a much younger man. He became all hands & quite the flirt during these spells. Even as most of the man I knew to be my grandpa slipped away, there were times he slipped back in his bullheaded, humorous ways.
I have seen dementia strike a few others over the years. I saw some who just seem to fade away; become lost & not know those they loved. I saw others be struck in such a way that their personalities became completely different. I have witness this disease destroy in many different ways.
Fast forward to 2012 with my father. There had been signs for some time. I think there were times that he knew something was off. He did what those with the early stages of dementia often do. He laughed off some things, gave excuses or “explanations”, or just reminded everyone that he was getting older. Honestly, I saw the signs. Yes, I guess in ways I also helped him to cover it up with others. He had always been a hard-headed, proud person; probably too proud. I guess since I kind of had a sense of what was coming, helping to cover it up was my way of helping him keep his dignity as long as I could. Again to be honest, my relationship with my dad had never been the easiest. But over the few years prior to the major onset of all of this, was probably the best it had been. He had started to try to show me a little respect. He had asked that I start helping him with doctors & his ongoing medical issues. He had started asking my advice on most things. He had started to actually talk to me.
About a week after Thanksgiving 2012, my father got out of bed & had a stroke. It took a major toll on his body. He then ended up with sepsis. The following months were a nightmare. As his body tried to recover, his mind was all over the place. I knew. His wife, my step-mother kept holding onto the hope of how during the months following a stroke a lot of recovery could occur.
During those months, it became obvious the dementia had really taken up residency in him. To make it all worse, he also was struck with major delusions. So his “memories” were majorly distorted. He didn’t trust anyone; not doctors, nurses, his wife; no one except me. I had to reassure him that his medications were correct and that he needed certain tests. There were times that I had to go to rehab & do his therapy with him so that he would cooperate. Even though I was back & forth every day, I got calls at all hours of the day & night because he wouldn’t do this or take this. I received calls from him because he thought he had been moved & hidden from me, thought wild crazy things such as nurses being naked in the hall were occurring, thought his wife was doing all sorts of thing to or against him, or he was just confused about what was going on. He trusted me & only me.
Then, in the Spring of 2013, he snapped. He turned on me. He said terrible things to me & told me to get out and to not come back. That would be hard for any child to see & hear. Being as how strained our relationship had been up until the last few years, it really hit hard. I have to admit, I had the thought of, “well so much for the past couple of years where I thought we made progress”. I left. My step-mother is in her 80s & still needed me. So I stayed out of his sight, letting him think I wasn’t around. But I still slipped around helping her & overseeing his care.
After a week or so, he started calling. Sometimes he would call saying he he didn’t know what he said or did but he was sorry. Other times, he truly would forget what happened & would call asking why I wasn’t there. Things haven’t been the same since then. I have to pace my visits & phone calls based on where his mind is at the moment. Due to the delusions adding to the confusion of his dementia, he often thinks things such as: I am controlling his wife, stole money (that he never had), and am trying to convince people he is “crazy” (his word) when, in his mind, there is nothing wrong with him. Then other times, everything is fine & he just acts like nothing has been said or happened; just wonders why everyone thinks something is wrong with him. He has all kinds of horrible things he thinks & accuses his wife of doing.
Yes, up & down. I have seen it many times, many ways. Dementia seems to take many different courses; yet is always devastating.