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Dads

‘He’s Not There’–Living With My Father’s Dementia

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Yesterday was the day that my dad planned to take our dog Daisy for a walk, jump in front of a moving vehicle, and kill himself. But we had to put Daisy to sleep a few months ago after her long battle with cancer. And we had to put my father in a nursing home this summer. My dad isn’t able to walk or speak or use the toilet. He doesn’t recognize any of us, and he doesn’t respond to his name. I can’t imagine that he has the kind of awareness that would enable him to realize that yesterday has gone and past and he will continue to live despite his own wishes. 

My dad was diagnosed with Frontotemporal Dementia nine years ago, when he was 60. What began as mixing up words (bowl for bottle) and short-term memory loss, progressed to a disengaged affect, lessened self-consciousness (clapping along to street performers, talking to strangers all the time, tearing up while hugging someone he loved) and obsessive compulsive behavior.

Eventually he progressed to not having many words at all (aside from “yes!” and “thank you!”), exhibiting no self-consciousness (eating off of other people’s plates, peeing in public), and living a silent repetitive day (wake up, make cereal with three strawberries, lay out meds, watch news, use heating pad, walk around the house for 10 minutes, play solitaire, use heating pad, take nap, make lunch of lettuce, four slices of turkey, two tablespoons of poppy seed dressing, watch news, use heating pad, walk around house for 10 minutes, play solitaire, take nap…). Now he doesn’t talk at all, doesn’t use the toilet, doesn’t walk, and has no knowledge of who anyone is, including us, his family.

***

A few years ago, when I was visiting my parents in Pittsburgh, my mom and dad returned from a therapy appointment and my mom told me that my dad had threatened to kill himself. It was the summer after my first son was born, four and a half years ago. He was a few years into his dementia and his affect was such that I didn’t know if he was joking or serious, or even if he knew what he had said. None of us really knew, but the doctors decided that this was both an understandable wish, considering his prognosis, and also one that he wouldn’t do anything about, considering his current state of deterioration.

Later that day while I was unloading things from the fridge and passing them to him (maybe we were about to make a salad, that same salad that the two of us had everyday that summer, me trying to lose the baby weight, him trying to lose the early/forced retirement weight) and I asked him point blank about his statement in therapy.

Without missing a beat or showing any emotion whatsoever, he replied, “When this gets so bad that I’m really upsetting you and your mom, I want to die. And I want to make sure I die before I’m 70, when my life insurance runs out. I’ll take Daisy for a walk, throw myself in front of a car, make it look like an accident, and the insurance company will never know.”

I think I was more surprised that he noticed and internalized how annoyed and short-tempered I was being with him that summer. I thought his seemingly clueless behavior (he would walk into the bathroom while I was showering, yell down the hall when the baby was sleeping, ask my husband 10 times a night how many cups of coffee he would be drinking the next day) and completely blank expression at all times meant that he was far gone from being my dad, from even being a person with feelings.

But he was still there. And he was still being my dad, worried and concerned about his ability to provide financially for my mom, feeling like he was a burden, wanting to make this as easy as possible on everyone. We hugged, I cried, I apologized, and I told him that the money wasn’t important. He quickly disappeared back into his disease.

***

When my mom held Daisy as they put her to sleep, she said it was so peaceful and loving. It struck her that our society gives pets more dignity in death than people.

***

My dad is gone. Any doctor would agree. There are huge parts of his brain that have atrophied. It’s just a matter of time before my dad’s brain is so diminished that he won’t be able to control his swallowing, and he will develop aspiration pneumonia, which we will not treat per his advanced directive, and he will eventually die, days, months, years after he would have wanted to.

But luckily (people tell me and I tell myself) he doesn’t know what’s going on. It’s not even like Alzheimer’s where there might be moments or periods of lucidly. He’s not there.

Yet the other day my dad grabbed my mom’s hand and brought her to his room and started unpacking his end table, giving her his belongings. For months, even before he was in the nursing home, he hasn’t known who she is, and never knew how to get to his room in the nursing home on his own. She said he was indicating that he wanted to leave, that he wanted to go back home. She’s been wracked with guilt ever since, even though he was quickly distracted and hasn’t done it again.

Does he want to go home? Does he want to die? Does he know that I would trade all of the money in the world to have one more conversation with him? To have been kinder and gentler to him as he was slowly consumed by this terrible disease? To have realized how much of him was still there instead of focusing on all that was gone? To have him know my kids, to have them know him?

***

When I told my dad I was pregnant for the first time, he said, “I’m so happy because I’m going to have another grandchild. But I’m really happy for you, because I know you’ve always wanted this.”

I don’t know what you really want at this point, Dad. But I wish that I could make it happen.

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