My son Joel and I pull into the parking lot of the Alzheimer's center where my mother-in-law Barb now lives. Dad cared for Mom at home for years before it got too hard - before she needed professional care. Less than a year later, he died unexpectedly of a massive heart attack on his way home from vacation. None of us could wrap our minds around the fact that Dad was gone and the fact that Mom no longer knew her children and grandchildren. I am in the midst of my own life of daily caregiving. Joel, the youngest of my three sons, has autism.
Walking up to the front door of Mom's building, I let Joel ring the bell. Once buzzed in, we enter the spacious lobby, which is tastefully decorated in shades of rose and green. Warm lamplight brightens the dimness of late afternoon. As pretty as the setting is, it cannot hide the smells of a nursing home. The odors of urine and dinner compete for attention. My nose wrinkles, and I attempt to hold my breath.
"Hamburgers," Joel says, sniffing.
"Mmmhmmm," I mutter.
As we walk down the hallway toward Mom's room, several women in wheelchairs reach out toward Joel. It's like running the gauntlet. On our twice-weekly trips here, Joel is hugged several times before we make it to Grandma's room. I am amazed each time at his equanimity with the situation, considering that he rarely lets people outside the family into his personal space.
Mom's door is open. The room is dark, the curtains pulled tight. She is napping in the antique rocking chair we brought from her home. We've worked hard to make her room as home-like as possible. Family pictures cover the top of a Victorian dresser from her bedroom at home, and artwork she and Dad collected over the years decorates the walls. I walk over to the window and open the blinds. Joel approaches his grandma.
As usual, she is first confused and then delighted to see us, even though she doesn't recognize us. It is getting harder and harder to find the "real" Barb when we visit. The mother-in-law, whom I knew and loved for twenty-some years, was a highly intelligent woman, a fastidious dresser, and always impeccably groomed. Today she can barely string together a sentence, her sweatshirt is stained and there are hairs growing out of her chin. I make note to speak to the nurse.
But Joel doesn't seem to notice. At eleven, he's still not too big to sit on his grandma's lap and share pictures of his brothers, of his mom and dad, of his black lab Poco. Mom points to each one and makes comments, none of them making much sense, but that doesn't bother Joel. He knows he is making his grandma happy, and that's just fine with him.
Suddenly it strikes me: the different lenses through which my son and I view this more-than-difficult family situation.
I smell urine. He smells hamburger.
I see strangers invading my son's personal space. He invites their touch.
I am immersed in a world of old memories. He is making new memories.
I grieve for the mother-in-law I once knew. He plays with the grandma who is here today. Grandma holds him on her lap and looks at his pictures. She loves him. He loves her.
In Joel's world, that's all that counts.
This story is adapted from the book Autism & Alleluias, Judson Press, 2010.
Story submitted for the Ohio Department of Aging's Family Caregiving Story Project.
For caregiver assistance, please call your area agency on aging at 1-866-243-5678.
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