Finding Peace

Coping with the long, slow goodbye of a loved one with dementia.

In the quiet recesses of my heart lies a private struggle that no one sees. It’s here that I keep my deepest heartbreaks. No one can see them here. No one can tell me I am being too dramatic or callous. No one can judge me here. It’s here that I hide my sorrow. I’ve buried many deceased family members here, including my own daughter. I’ve also buried two that are still living. My parents' ongoing dementia can often lead me to frustration.

Dementia is slowly stealing away my mother. She has no idea. She doesn’t know she has dementia. She doesn’t know the heartbreak that she’s been at the center of for most of my life. Let me be clear: I love my mother; I don’t like her.

There’s a difference; you can love someone for giving you life. You can love someone who sincerely believes they’ve been a good parent. You can still love them even if they weren’t the best parents. However, you don’t have to like them. In some ways, the dementia makes it easier to deal with her. I realize that she doesn’t realize how sick she has become. I’m now her caregiver in an unexpected twist of fate that reversed our roles in life.

On a typical day with my mother, I have to answer the same questions repeatedly. She can’t remember how to eat her meals. She’ll fill her plate at dinner and then look at it and blankly ask anyone near her, “We’ll, how do I eat it?”

Then there’s her weekly shopping trip. She loves to go shopping. This would be fine, except she’s been the target of many scams. She loves to go over and look at the “gift card” displays. To date, she’s lost over $400. She insists she’s just “Helping a little boy.” We’ve tried to explain to her until we’re blue in the face; she insists she’s right and we’re wrong. The easiest way to handle this is to have her money in our account and ensure she gets everything she needs. “I’ve got your debit card right here,” I tell her.

In the last three years, my life has taken some dramatic turns. I got married after having been single for eight years. We bought a lovely 10-acre farm. Then, my aging parents needed more care than I could give them living forty miles away. So, they sold their house and moved to our property, where they used the proceeds of their house to purchase a nice double-wide on a hillside with a gorgeous view.

I’m glad to have my parents closer so I can keep an eye on them and ensure they’re safe. I don’t worry as much anymore that I’ll walk in after driving the forty miles to see them that the burner is on and mother is trying to eat frozen lasagna and calling it toast or eggs. My father had stepped in and started cooking, but that wasn’t the only concern.

Our biggest concern was the fire risks. If it wasn’t a burner on, it was the three extension cords and seven plugs my dad had plugged into the adapter to keep his octopus of HAM radio equipment going. It ran all the way around the living room, bypassing the three other outlets in the living room.

Cleaning out their house brought me to the realization that my dad was also being stolen away by dementia. As I inquired about the three extension cords, seven plugs, and adapter, I realized he was slipping away. Just in a slightly different fashion than that of my mother.

Watching the two adults I call parents slip into the grip of Dementia has been eye-opening. It stealthily creeps in when unexpected and changes how my parents perceive things. Their world is so different now than when I was a kid.

Unlike other medical conditions, dementia doesn’t present itself like other diseases. It quietly tiptoes in and takes over. One minute, you’ll be having a conversation that makes perfect sense; the next, you’re trying to figure out why your parent is just standing in the middle of the living room. If you ask them, they’ll tell you that the parakeet escaped (we don’t have a parakeet and haven’t since I was a young child). Or they may tell you it’s time for them to go to work (they’ve been retired for thirty years).

I know I’m not alone. I’m not the only adult child who has had to step up to the plate and take care of an aging parent. Many adult children have had to do the same thing. Some have had to move back home to care for aging parents. Others, like me, were able to move their parents closer to where they reside. A select few are placing their parents in care centers where they can get even more care.

Dealing with a parent suffering from Dementia takes a huge toll on everyone in the family. My siblings call and offer moral support, but that is all. They live in another state and aren’t here for the day-to-day care. Their brief visits are met with delight by my parents and frustration on my part because I carry the burden of care.

The long, slow goodbye is often challenging. There are days that I’ll go into my room, lie on the bed, and stare at the ceiling, asking myself, “why?” There are days when I wonder how I will ever survive my parents’ second childhood or teenage (my friend calls it “senior-agers”) years. To fully understand how dementia affects a family, one must first recognize the cognitive changes that are taking place.

For most, it tiptoes in quietly and begins showing up as forgetfulness. Eventually, it advances, takes away many cognitive abilities, and changes the role from that of a loving adult child to that of a caregiver. I never set out to become a caregiver to my parents. Still, over the years, I became a licensed caregiver and cared for several patients with advanced-stage dementia. It was a good preparation for my new role with my parents.

I’ve had to learn to take plenty of “me” time. It helps me avoid being burned out on tending to my parents' needs. I pace myself and only set up one or two doctor visits per week (at one point, they were trying to visit one of their many doctors every day of the week). Now, we pace ourselves and schedule well in advance. This helps me recuperate after navigating them through town and traffic and explaining how an elevator works (again), or “no, we can’t leave the car in the loading and unloading zone.”

I’ve learned more empathy for caregiving. It’s not for the faint of heart. You’ll find that you laugh and cry with your client and family. Being a compassionate caregiver took inner resilience, and I’ve been able to use my caregiving skills to help my parents in many ways I would’ve never thought possible. I’ve also learned some great tricks at getting them to do things they may no longer wish to do, such as bathing and brushing their teeth.

So, as I walk through the valley of the shadow of what was once my parents, I have to remind myself to pause and remember. Remember how active they were when I was a child. Remember their sacrifices to ensure that I was fed and clothed when they may have wanted to spend the money on themselves.

I’m thankful I have the time to give them a long, slow goodbye. Not everyone has this opportunity. So instead of dwelling on the “Why me?” I’m going to appreciate each moment and treasure it. Life can be unpredictable, so I’ve learned to “bloom where I’m planted.”

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