I hate who my dad has become, the man I see with a failing memory such that he forgets what he agreed to weeks, days or even minutes ago. I hate all the times he refers to his failing health as something I’ve got to look forward to. I hate that this 71-year-old man sometimes acts more like a five-year-old. Sometimes I hate that I act like a five-year-old in response.
There is no arguing, debating, or convincing someone with a cognitive impairment. I despise every time that I forget this truth. I can’t stand that I don’t know how to communicate with someone who probably won’t remember our conversation.
My dad is also battling cancer, diabetes, and congestive heart failure. He takes more meds daily than I’ve taken in the last decade. He shouldn’t be alive. When he was 65 and first diagnosed with colon cancer, I asked, “Is there anything you want to do that you haven’t done yet? Any passions or hobbies you want to give more time to?” “No.” was his simple response. I asked, “Is there anything you want to be sure and say to any of your siblings?” “No.” Nothing.
When he was first diagnosed with dementia—not Alzheimer’s, but generic dementia—a decade ago, one theory was that his brain was shrinking due to decades of Lithium and other psych meds. For years the main symptom was just a bad short-term memory. Sometimes he would be upset with me and it would take a while for me to figure out it was something I did when I was 13. For the most part, he functioned well enough. Recently it is accelerating and worsening on almost a daily basis. We can’t trust a thing he says. He can no longer tell the difference between current events, dreams, old experiences, and delusions. He has a full-time caregiver living with him, but I’m not sure how much longer that will safely work.
Am I a horrible son for wanting my father to pass away quickly? I don’t feel bad about wanting that scenario but when he does die, I certainly won’t be surprised if my guilt and shame show up in a big way. What has recently hit is the fact that my dad is already dead. The man I knew is gone. I can’t honestly talk to him. I can’t share any of the challenges I’m facing, how worried I am for myself and for him. I can talk about my fears. I never know which word he might latch on to and obsess over. One day he’s worried about outliving his money, which is a concern I have, too. Another day he is sure he’s a millionaire and is ready to spend like one. I don’t dare correct him as there’s no telling what that might result in.
I used to be able to tell this man anything, now there is just a shell of somebody who thinks he’s quite capable but isn’t. I feel like I’m fake anytime I’m near him. I don’t feel safe in saying anything. I end up in tears almost anytime I’m with him.
Last week I spent four hours with him at the hospital and when we got home he told me about the results to a test. I reminded him that I was there with him and he had no idea that was true. The doctor tried to tell him it might be time to decide between keeping up the fight against the cancer or hospice care. Even if he could make a decision, he won’t remember it the next day. Moments later a nurse asked if I was his son, he said, “Yes, and he’s just like me.” I wanted to yell, “fuck you!” storm out and leave him there. But I can’t. I know it isn’t his fault. It isn’t anybody’s fault. It just is – which makes it suck all the more.
My wife has been taking my dad to every doctor appointment for the past eight months. Sometimes he is very appreciative of that, and then in the blink of an eye, he’s sure she is only doing it to get his money. I often tell him he doesn’t have enough money to make doing this worthwhile. That used to get a laugh. Lately, it just gets a blank stare.
Recently, his caregiver left the house to pick up a prescription and when she got home 20 minutes later, my dad was sure she’d been gone all day because they’d had a fight. This is the shittiest thing to watch anybody go through.
We live in a culture that has no hesitations with putting a pet down to avoid any pain and suffering, yet for our human family members, we are supposed to take every suggested action and medication. Yet, where does that get you if your body outlives your brain? Is dementia happening more and more because people are living through things that were supposed to kill them? Is it some way people are living, some as yet undiscovered cause that is leading more people to dementia? I don’t know. In this moment, I don’t even care. All I do know is that this sucks. If it is true that God doesn’t give anyone more than they can handle, something has to change for my dad’s sake, and for mine.
My father is already dead and the mourning is hitting me hard. It is even more difficult because my father’s body is somehow still going. I swear the only thing keeping him alive is his fear of death. His body can’t do anything on its own yet believes and often insists it can. I can’t remind him of reality and I can’t hurry his body to die fast enough.
Today, my dad thinks he is at work. He believes he takes cares of someone until 5pm when somebody else comes to pick him up because he can’t drive. His full-time caregiver told him that she is there to actually take care of him. He seemed to understand. Then a few hours later he was complaining that his job really stinks and he needs to quit.
This state of total confusion could last a long time and perhaps let him stay living at home, but there have been a couple outbursts of violence and anger over the last couple months too that may mean it isn’t safe for just one person to be with him.
Sometimes I can laugh about it. Sometimes I cry about it. Accepting that there isn’t anything I can do about it is the hardest part.
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