My Sister's Birthday

     My sister Linda, if she were still living, would be 80 years old today. She died five years ago of Lewy body dementia, a terrible illness similar to Parkinson's except that it attacks the mental capacities more than Parkinson's does.

    Linda was a year and a half older than I, so we were very close as children.

We were the first two of five children and shared a bedroom until Linda went to college. We were so close that when Linda went to first grade, leaving me behind, I moped so badly my parents put me in kindergarten. (In those days, kindergarten wasn't considered a necessary step before first grade.) Our closeness lasted till she went to college and then I to a different college, and our paths verged. She got married while she was still in college, though the marriage didn't last much longer after graduation. After that she was a single working mother. She made her career as an occupational therapist for children, a profession she learned about through a Girl Scout field trip. She remarried after her children were grown, to a wonderful man who enriched her life until her death.

Years before her illness

    Her decline was gradual. At my niece's wedding she was cogent and active, just at the beginning stages of her illness.

Dancing at my niece's wedding (Linda, center)

Later she was put in a memory facility, a very nice place, with birds and plants on the porch and where I was able to take her for a walk in the garden when I visited.

Linda and her sisters

Later, though, when even that facility couldn't take care of her, she was put in a place with other dementia cases. I hated seeing my sister there. 

    She lived in Atlanta. I visited as often as I could. Mostly she knew who I was, and I often wondered how much of her incomprehension was because she couldn't understand or because she couldn't verbalize.

Linda with her siblings, several months before her death

The day she died my sister Laura, who also lives in Atlanta, was at the facility where she lived. One of the caregivers there told Laura that Linda wouldn't live much longer and suggested her sisters who weren't there could talk to her on the phone. I was so grateful to have had that chance to say good-bye to Linda. It comforts me to think she might have heard me, recognized me, and received the love I spoke through the phone to her.

    I went to Atlanta for her memorial service, which was held in the church she attended. At the reception after the service, person after person came up to me to say, "Your sister made such a difference in our lives. She helped our child so much." Over and over, I heard the same tribute. I had never known until then how revered Linda was in her field.

    Lewy body dementia is a terrible thing. I wrote the following poem when she was still in the memory care facility. My heart still aches for my sister.

Conversation with My Sister

Wind blows through a brain

hollowed out

by a disease of dementia

scattering the words

that then fall

in broken syllables

from her mouth,

garbled letters,

incomprehensible utterances

begun with vigor

sinking into mutter

as though the words were being sucked

back into their hollows.

If into the yawning absence

I drop a question,

response is blown to bits

that tangle on her tongue,

that she chews up and lets fall,

unintelligible crumbs of language

caught on her lips

spewed out with intent

but empty of meaning

and even when a phrase is clear

it makes no sense

her brain betraying her

by giving voice

to hallucinations and stereotypes

that have no roots in reality

though maybe the reality

of the brain hollowed out by disease

is too horrifying 

for words.