What It's Like To Be Your Grandparent's Caretaker

"Be nice," I tell myself every morning. I sip my morning coffee and stare out the window, letting the fog of exhaustion clear my head as I slowly begin to wake up.

It is my favorite part of the morning. It's quiet and peaceful, free of any distractions or responsibilities or mindless small talk — although, in all honestly, I shouldn't be talking to anyone before I've finished my coffee).

Then, I hear you slowly creaking up the stairs, and suddenly, my internal peace vanishes. I am instantly on alert. I listen to you shuffle across the floor to make your morning cup of hot tea.

I find myself watching to make sure you don't trip, pulling my chair in until my knees touch the table to give you enough space to get by, even though you insist that you're OK. As you pour your bowl of cereal, I check for any signs of confusion.

While you are able to hold the cereal at the correct angle so that it actually pours out of the bag, you don't seem to notice that half of it is spilling outside of the bowl onto the napkin you so meticulously placed underneath (you cannot start a meal without the proper number of napkins).

I debate whether or not to tell you this or to let you figure it out on your own. The more you can do for yourself, the better, as this will help with your independence and mental acuity (at least we hope).

After weighing the options, I go with the latter.

You moved in with us about five months ago, on the day that grandma died. Although we love you, taking care of you has been a greater challenge than any of us could've expected.

Your dementia has gradually worsened during that time. You are prone to mood swings, bouts of anger and depression, in addition to the forgetfulness and confusion.

Growing up, you were the best grandpa I could've asked for: kind, funny, loving, always willing to help. And although parts of that personality still shine through every once in a while, it has become smaller and smaller as your dementia takes over.

It's been an adjustment for all of us with you figuring out what your new role is in the house and dealing with a completely new routine as well as us shifting from having an occasional guest to overnight, 24/7 company.

Being enclosed in the house with you for almost two months straight during this quarantine has created unintentional anger and irritability towards you that I am deeply ashamed to admit that I feel. It has taken a heavy toll on all of our mental states.

I argue with myself multiple times a day, every day, my heart begging me to be kind (it is not your fault you're sick) while my body sometimes feels physically unable to. I cannot stand to be near you — it is incredibly exhausting to have to constantly worry about and watch you.

I force myself to make small talk with you, even if it is almost the exact same conversation we have every day. I choose my words carefully so that you don't become frustrated or sad if I unintentionally ask you something that you can't remember.

I remember to make eye contact with you to give you the respect and attention you deserve, even if I'm afraid that all of this anger I have been burying deep inside me will explode outward, and I won't be able to contain the impact.

One day, I tell myself, I will cherish these moments. But sometimes, it is so hard. It is so, so hard.

You constantly take your pills at the wrong time, even though your pillbox is labeled. You always check your phone to make sure of the time. You then argue with Mom because when she tells you you are doing so, you insist that she is just trying to fight with you...or you lament that it is her fault because she "forgot" to fill the box.

You complain if you don't like the food we give you or if we give you too much.

You yell at our dogs, telling them to "get lost" or "MOVE..." sometimes even kicking them to get them out of the way.

Worst of all, you complain that Mom, who recently started a new job (and is working from home because of COVID-19), is too loud, works too long (therefore pushing dinner back), or is for some reason, "afraid of her boss."

During these outbursts, I consider all the possibilities: Are you acting this way because of your dementia, because of your repressed grief or because this is just simply you?

However, not everyone in our family has the same reaction.

Mom is starting to lose it, especially because you are the hardest on her. On the days she snaps, she becomes absolutely (and understandably) livid, spilling out every last detail of how you make our lives harder, threatening to send you to a nursing home because she can no longer take it.

You try to explain yourself, arguing back at first. When it becomes too intense, you retreat into yourself, mindlessly stringing together a series of "I'm sorry" and declaring that you will never speak again.

And for that, I truly feel bad.

Some of these things you don't deserve to hear. Sometimes, she takes it too far blaming you for things that you simply can no longer control.

But is she wrong?

Is it fair to have to constantly be kind and compassionate to someone who does not show you the same respect?

I really don't know...

Your brain cells are dying. One by one you are losing a small part of yourself, and there is no way to stop it. One day, we will have to feed you and clothe you and bathe you because your mind won't even allow you that.

I don't know what is going to happen when the world reopens and things get back to normal when we all return to school and work and our lives.

In a way, COVID-19 has been your saving grace, buying you more time to be taken care of when normally you would be spending most of the day alone. But, as your dementia progresses, I don't know if that's going to be possible anymore.

At 12:30 in the morning, Mom's phone rings.

You are on the other end frantically wondering where we are and why no one is up yet. It is pitch black out, and you are in the kitchen with all the lights turned on having a bowl of cereal after having already gotten dressed and emptied out the dishwasher.

Mom races downstairs to tell you that it is the middle of the night and to go back to bed.

Eight hours later, I sit at the kitchen table with you. You make a joke about something you see outside, and for the first time in a long time, I see the sparkle in your eyes that you used to have.

I am filled with an overwhelming relief to see you smile again.

I glance at the Life Alert dangling around your neck, blinking blue. For a fraction of a second I hold onto the hope that maybe, just this once, everything will be OK.

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