My mother has had dementia for a long time but in the last six months she has really gone downhill — and it sucks. I can’t tell you how much it sucks. She is not going to go quietly into that good night, she is going to drag my brother and me through the rabbit hole with her and it’s been nothing but a festival of drama and confusion ever since the journey began in earnest.
I say “in earnest” because my mother has suffered from dementia for the last 45 years, ever since she suffered an anoxic brain injury (sometimes called cerebral hypoxia) due to lack of oxygen to her brain when she was 29 years old. She’d had pneumonia and had to undergo a tracheotomy because she couldn’t breathe. While they were performing the tracheotomy she suffered cardiac arrest and was dead for longer than 6 minutes. The lack of oxygen to her brain caused severe brain damage — most notably her lack of a short term memory.
She always forgot things and never knew what time it was. She had no sense of time and was always asking what time it was because even though my father had clocks all over the house she couldn’t tell time on an analog clock (which was just as well because even though my father had at least one clock in each room none of them were set to the correct time). She knew what time it was based on the TV schedule.
Mom confabulated — which was basically filling in the holes in her memory with her best guess. Often her best guess was right on and there was little issue. Occasionally the stories of her soap operas would filter through and I would be accused of having done something outrageous but for the most part she could put things together ok.
She managed. We managed.
Her dementia stayed relatively the same over the years. Maybe it was because I don’t remember what she was like before she got sick or maybe she suffered from the same age related forgetfulness as the rest of us and it just wasn’t noticeable? There wasn’t much for her to keep track of so it was difficult to notice.
I should have known something was up a few years ago when she became irate with me for not giving the cook at her nursing home her father’s banjo that she loved so much, so angry she asked me to leave during a visit even though I had no idea what it was she was talking about. In her mind she had asked me to give the banjo to this person because he played and none of us did. She said she was in love with this person and he loved her back (which was true enough, he said so once when I was visiting but in a way that most people would have understood he thought she was a character – this caused all kinds of discussions with management).
Mom didn’t understand but even worse I didn’t. I thought she was telling the truth, that he did play banjo, even featured on the radio at times! – because I didn’t understand she was confabulating most events in her life.
Now, of course, we recognize that she is delusional.
Six months ago she would make a comment about how this cook was singing on the radio. He was on every station even though it was generally believed he sang only country music. He was also on TV occasionally and it turned out he was the nursing home director’s son even though he was at least ten years older than the director. Mom had created a world that only made to sense to her and yet it was taking up all of her time and she was dragging my brother and me into it.
No matter how hard my brother and I try we can’t keep her focused on the here and now. She knows who we are, who our children and significant others are, but she isn’t interested in anything going on outside of her own narrative.
Lately she’s been obsessing about how my father had killed a young girl with his car while under the influence of drugs or alcohol. The young girl’s family was apparently blackmailing my brother and myself which caused her all kinds of anxiety. When I showed confusion about the story, that I didn’t know anything about it, she just confabulated more and said it was because my father had hid the truth about it to everyone and only now was it coming out. My father has been dead for 8 years and I am almost certain he has never been in an accident where he took someone’s life due to driving under the influence or for any other reason for that matter. The problem is my father did lie, all the time, so I can make that leap with my mother and put her story into the realm of possible because he hid so much from all of us.
And there lies the problem.
Since my father died and my mother moved to a nursing home, I haven’t really had to deal with any of the past. It was over. Sure, my brother and I occasionally got to talking about things but for the most part it was a closed door (my book not withstanding, and even that had been shelved until her death at her request). Now that she was losing her mind and all the past was bubbling up we’ve had to deal with it all over again.
And it sucks.
It sucks because in her demented world she is in control of things. She is the one pulling the strings or at the very least the reason all the drama is taking place. And, she loves it. Me, not so much.
When we realized she was having delusions we decided not to point them out, but to instead ride them out and go with the flow. If you know me personally or have been reading this blog for any amount of time you know going with the flow does not come easy to me.
And I know it isn’t about me, it’s about her and making sure she feels safe. It’s just unfortunate that her dementia takes the form of opening old wounds.