This post will be long and a bit raw. As a society, we don’t talk about grief and death much. We don’t talk about painful subjects. So I am going to talk about it and hope some of you gain something useful from it.
About 2 months ago, I learned my mother had stage 4 pancreatic cancer and was going to die. My mom also had Crohn’s disease and wet macular degeneration. She was legally blind and in constant pain for the last several years. Related, my father has had memory issues for years and they are getting worse.
Around that time, my mom passed out and was rushed to the ER. I was already planning on going down to Texas from Illinois to see her one last time and now it was more important. It was a terrifying trip. It is about 15 hours to Texas and traffic was heavy and fast. Around Austin, it is a land of massive flying overpasses. As bad as the drive was, the experiences were worse and would continue to get worse.
Over those four days, I drove 32 hours to spend 12 hours with my Mom and only 1 of those hours was with her alone to have meaningful conversation with her. I am glad I got that one hour.
My mom passed away on April 7, 2 days before her birthday. I am weirdly okay with my mom’s death. She was in pain for many years and she is at peace.
The problem is, I didn’t just lose my mom. I have lost my dad as well. It is a weird metaphor that life is a tapestry. The Norns, the Fates, what have you. The last one clips the thread and the story is woven. But that tapestry isn’t meant to have hidden meaning. The threads unravel to slip forth their secrets. When you die, secrets come out. And all of my family’s secrets came out. My dad was much worse than I knew. Tales of abuse surfaced. Tales of his pettiness. Tales of impulsiveness. Tales of wanton spending.
I believe my Dad has frontotemporal dementia. Why? He has many of the symptoms. He doesn’t have weird compulsive physical behaviors but he has many of the emotional symptoms. The lack of empathy. The lack of judgment. Difficulties in understanding things said around him. And the worst is the change in personality. The personality in my Dad’s body is not the one I remember. I had my issues with that man but I believed him to be a good and gentle person. The personality in there now is not. He is the most selfish and disconnected person I know right now.
Among his memory issues were not knowing whether my wife was alive or dead, not knowing whether I was married or divorced, not remembering that he has already told me Mom was sick, not remembering that he has already told me Mom was dead, and not remembering when he had last seen me. According to my sister, he doesn’t remember what errands he has run, doesn’t remember whether he has taken his meds, doesn’t remember signing up for scam offers, etc. He can’t function in his day to day life.
While intellectually I understand he can’t control what is happening to him, I can’t help feeling anger towards the behaviors towards me. Okay. I arrive in Texas late at night. The next morning, I get up, have a quick breakfast, and head to my parents’ house. The idea was I was going to see my mother. My dad’s first things are “do you want to leave your bag here? Make yourself comfortable. Something to eat?” He is almost jovial. I am there to see my dying mother, not for a social call. I get him to hurry up and we go to the hospital. They have a rule (and I was told about it before I left IL), of 1 visitor in a 24 hour period. The hospital staff try to enforce the rule and my dad uses me as an excuse “This is my son who drove all the way from IL”. I don’t like being used as an excuse to break the rules. Dad ignores the rules and comes up with me anyway. My family doesn’t do silence well. I brought books and I am content to be silent if Mom wants to rest. Dad broods. It was an awkward 8 to 10 hours to say the least. The next day, I drive myself to the hospital and I get a little time alone with my Mom.
I take Dad to dinner twice over that weekend. Both times he talks about how he can’t understand how my wife and I speak to each other. It was normal couple conversation as far as I can tell.
I leave and make it back home. Every day is new trauma. If Dad calls, how much is real? The fake cheer and sing-song voice is grating on me. He tells me the same things I already know. I come to hate the phone calls. The secrets come out as various family members tell me things. Sometimes there is despair. Mom goes home and is in hospice care. Reports come in of Dad yelling at the care staff. Eventually Mom passes.
The speed at which Dad does things are dizzying. He is going to move out. He is not going to move out. He is going to have her buried. He is going to have her cremated. He asks over and over if I want any of her things. Do I intend on coming down again? The mixture of cheers and tears is disconcerting. Which is real? Are both?
Then we come to April 28. Three weeks after my Mom has died. I now know for sure that I have lost my Dad as well. My sister, who has been managing the estate and everything else, calls me in tears. Dad has decided he is going on dates. My mom hasn’t even had her final service yet. Can I call and try to talk sense into him? I do so. It was a bad call. He is petulant and childish. Again, this is not the man I remember. He blows me off.
My sister has a Power of Attorney over him and can sort things out.
My Dad and I are very different people before his memory issues. We became very different as we grew apart. I at least respected him. I don’t respect who he is now. I don’t recognize him now.
If he does have this type of dementia, he won’t live long. His brain will continue to decrease, his memories will continue to fade, and his body will eventually break down as well. If he has something else, then I don’t know. I didn’t mourn for my Mom because she is at peace. She is finally out of pain. I do mourn for my Dad. Who he was is gone, even if his body still moves about.
