I went home the other day and my dad greeted me. He hugged me, grabbed my tangled curls with both of his hands, pulled them down over my ears, and wrapped them under my chin. The next weekend I went home, he fixated on my sleeves. He lifted my sleeves and kept folding the cuffs.
For those moments, I felt the gaze of a father who took care of his daughter.
But he can’t.
He has memory loss. The front of his brain’s lobe is dwindling. Much like the body of an elderly person that shrinks, loses mobility and muscle, the same thing is happening to the front of his brain. Nasty plaque is also building up in the front of his brain, and the proteins have misshapen his brain’s nerve cells. Instead of his brain looking full, round and plump, it’s now riddled with holes. The image of a small and deflated brain provides me with patience when I get frustrated over my father’s changed behavior.
Hell, some of the doctors said he has frontotemporal degeteration/degeneration (FTD), others said he has Parkinson’s-like symptoms. All I know is that he has some form of dementia. I’d like to draw your attention to my verb choice. He has memory loss, he does not suffer from it. In fact, it’s more the families that suffer rather than the person.
I, along with my entire family, wish we could do something proactive to fix it. My mother has pored over websites offering mostly ineffective advice that this vitamin or that kind of food can help prevent further mind deterioration. So what I can do is try to shape the way others interact with people who have it – and equally important, their caregivers and loved ones.
I write this essay to help bring the disease out of the shadows, for my mother and all family members whose loved ones have transformed into different people. I write for people who care, but don’t know what to do for those who have dementia or their families.
Skills and actions we take for granted evaporate over time for those with dementia: driving, reading, writing, speaking, eating, swallowing, flossing, bathroom use, and for some, walking. These daily tasks fall to the caregivers.
I find simple questions difficult to answer. Based on my experience, I suspect many people whose loved ones have memory loss go out and socialize to escape the incessant tasks at home. These questions take me to a painful place. Trigger warning, trigger warning! I want to tell them, if I talk about this too much, I WILL cry. For my mother, her coping mechanism is to completely shut down the conversation by saying everything is fine or to quickly change the subject.
Here are a few things people who are caring for someone with a mental illness hate to hear:
1. “I’m so sorry to hear that – how could that happen to him?”
No one really knows.
2. “Wow, I know someone who is even older, and they are fine.”
Getting older isn’t fun. Half of my father’s friends have died—of cancer, of heart attacks or they have some sort of ailment. The lucky ones don’t. But what use is the comparison?
3. “How old is your father?”
Does age matter with degenerative disorders? Not really. It can happen to a 60-year-old, 70-year-old and so on. The book-turned-movie “Still Alice” does a great job of describing it through the lens of a 50-year-old woman who gets early-onset Alzheimer’s. I highly recommend it.
4. “He used to be so active.”
No use crying over spilled milk.
5. “He lived a great life.”
He’s still alive! He enjoys eating, dancing and laughing. He smiles when he sees me. I hold his hand and he squeezes mine. I tell jokes and he laughs. We tease my mother together. This is life—just a different one than one we knew before.
6. “That makes me so sad.”
We’re the ones living with it. We don’t ask for pity and comfort. The last thing we want to do is comfort you too.
7. “I know what it’s like.”
Perhaps. But it doesn’t make us feel any better. I will say that there is a kind of camaraderie among friends whose parents suffer from similar mental diseases, but each case is so different.
What we like to hear:
1. “How are YOU doing?”
It’s hard to be a caregiver. Today, as families are separated and smaller, it can be difficult to find trusted help. Many are forced to turn to external caregivers or the controversial homes for the elderly. Even when you do find someone, you always wonder if they are treating your loved one the way you would want them to. Indeed, the elderly are some of the most vulnerable today.
2. “What can I do to help?”
For a while, my mother used to get mad and frustrated. Here’s a man that used to take care of everything in the house and many things in her life. Today, the responsibilities have fallen on her shoulders. She now must look after the large yard of the house that they live in, walk the dog, take care of my father, handle the finances, and carve out time for herself to stay fit and happy in order to provide my father with proper care. I know she appreciates it when I can come home for a bit and hang out with him, and she’d appreciated if others did too.
The dementia has rendered my father a child. There are times I deeply miss him and wish he was there to provide fatherly advice. Today, at 32 years of age, I possess similar interests as him. I love art, poetry, exercise, and I’m generally curious about the world. I wish he were fully here to share them with me. I do count my blessings that he is still here and we can still go on walks together, laugh at a stupid joke, or eat a great meal together.
I’ve found beauty in my parents’ marriage. My mother, who is 19 years younger than my father, has gone from being the one taken care of to the caregiver. Her love has taken the form of sacrifice. I find it awe-inspiring. Now, as I search for my own life partner, I think to myself, would I care for him the way my mother would? More importantly, would I do so with love and without resentment?
I want to tell him about my company’s latest projects, my most recent date, and my new apartment. And I do. But it ends there. So rather than wish he was the way he used to be, I try to enjoy the time with the father that I have now. One way we do so is by singing songs from musicals we used to watch together—Oliver! is a big favorite. I encourage him to sing along to the choruses or finish the last words of a line so that he doesn’t fully lose his speech.
I now read to him before bed every Sunday. Once I lay next to him, staring into his eyes and unprompted, he said, “I love you.” There’s part of him still there. It comes out sometimes. I have some guesses as to why that happens. Perhaps it’s when there are few distractions in the room, when he sees someone he knows from the past, or when he hears a song or poem that he used to know. Ultimately, these are just guesses.
As people around the world live longer, we should support not only the elderly but the families and caregivers of those who see a person they once knew dwindle before their eyes. Support can mean a simple personal phone call, offer to run an errand, or a quick visit. It is the families and caregivers that live with it daily and suffer, rather than the people with it.
Six months ago, I went on a walk with my father and asked him, “Dad, do you think you’ve lost your memory? Or have trouble remembering things?”
He responded quickly, “No.”
His inability to remember his memory loss provided me with some solace. He doesn’t realize what he’s lost. He is a different person with a different brain. He’s not in pain and he enjoys simple things in life, like eating, slap stick humor and the rhythms of cha cha music.
This notion was shattered last month, when I woke him up in the morning and I guided him to brush his teeth, he looked at me with the urge to say something—unable to grasp the words thanks to his newly shaped brain, he managed to say, “I’ve even forgotten how to speak!” The moment of meta-realization hurt to hear, but I think moment later, he forgot that too.