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caregiving, not wanting to be a burdenIt was probably the last conversation Mom and I will ever have.

We shared a moment I will treasure forever.

Just a few short sentences were exchanged. That’s the most Mom was capable of. Mom and Dad were over for a visit and we were all dining at the kitchen table.

I asked my mom to come to the den with me so we could look at some family pictures together. In truth, I wanted to give my dad a break, and give him some time with the rest of the family — with his son-in-law, his grandkids—uninterrupted time; something he had not been privy to much at all during the last year and a half of my mom’s increasingly erratic behavior due to her dementia.

As we browsed the photo album, I pointed out certain people and events to Mom—some she seemed to recall a bit, others not at all.

Then she turned to me and said, “Bari, something terrible is happening to me. This shouldn’t happen to a person.”

“You’re right,” I answered.

“I don’t want to be a burden,” she said.

I turned to her and looked her in the eye. “You’re not,” I answered.

“Where do I live?” she wanted to know. “Who takes care of me?”

“You’re in a wonderful assisted living facility,” I told her. “Dad lives there with you.”

“But I don’t want to be a burden to him,” she said.

“Dad is with you because he wants to help care for you,” I explained.

“And don’t worry,”I added. “There are lots of people who help Dad. And provide three meals a day. And people who take care of you, help out with the laundry and all the other things that need to get done.”

“But I don’t want to be a burden.”

Over and over again she repeated that sentiment. And over and over again, I told her she was not, and never would be, a burden.

Not wanting to be a burden. It was the mantra of her life. Always wanting to be strong and independent. Never getting in anyone’s way.  Self-sufficient.

And now look what had befallen her. Her worst nightmare.

Oh, my sweet, sweet mom.

I too, can’t believe, or accept really, that this is happening to her. I watch as dementia robs her of her awareness, her personhood, her true self.

But I will cherish that brief conversation always.

It was probably the last moment of true connection I will ever have with my mom. And it was definitely the only time since she had gotten sick that Mom had been able and willing to confront and communicate to me the fact that something terrible was happening to her—something she didn’t understand, but despaired of.

After all, she had watched this happen to her own mother. And had probably spent her life living in fear that it would happen to her, as well.

Now, only a few short weeks later, Mom is confused, agitated, and seems to have no idea who she is, or who we, her family are.

Just today Dad visited with her, and though she gave him a kiss at his urging, he could tell she had no idea who he was — this man who has loved her and stood faithfully by her side in marriage for 57 years.

We have all been robbed.

And we all feel terribly helpless. The pain is raw and ongoing. If only we could rescue her. If only we could bring some measure of peace to her—and to ourselves.

We can’t.

And so I turn to the meager comfort of that final conversation. And meager though it may be, I will cherish it forever. I can only hope that somewhere, deep inside the locked recesses of Mom’s mind, she remembers my response and knows that she is not a burden and never will be.

She is ours—and we will love and care for her faithfully until the end.

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