That's Life: Lost to a Sea of Confusion

By Phyllis McGuire
iBerkshires Columnist
03:58PM / Wednesday, December 02, 2009

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There are 5.3 million people in the United States who are living with Alzheimer's disease, according to a report from the Alzheimer's Association. Such statistics, however, do not show how many hours a sibling, spouse or offspring worry about a loved one who is afflicted with the disease.

"Countless hours," I would say if that question were put to me. You see my sister Gloria is one of the people living with Alzheimer's disease. She has been engulfed in a sea of confusion for several years and as she drifts further and further away from us, I wish I could pull her back.

"Gloria wants to talk to you," my daughter, Jennifer, said recently, calling on her cell phone from the nursing home on Long Island where Gloria is a resident. "Her eyes light up when I mention your name." Those words were bittersweet for me.

Since I live in Williamstown, I only get to visit Gloria a few times a year and I carry a heavy burden of guilt because I am not with her more often.

When Gloria was well, we would call each other nearly every day, sharing what was happening in our lives and talking about the children who are most precious to us: my son and daughter and our two nieces. Fate denied Gloria the joy of having children so she lavished the children in the family with all the love she had to give and showered them with gifts from the day they were born.

But there came a day when I called Gloria at home and she rattled on about a big box in her living room. "I don't know where it came from," and "who put it there? ..." she said.

"Maybe it's the gift you bought for Cathleen's shower?" I said, referring to my future daughter's bridal shower.

"When is the shower?" Gloria asked. "Two weeks from today," I said and then uttered words I would later regret, "I've told you that a dozen times."

For some time, we did not recognize the signs that Gloria's memory was failing or was it that we just did not want to accept the fact? But we could not deny the truth when Gloria began leaving her unopened mail strewn here and there in her apartment, neglected paying her bills and taking her medications, missed appointments and was involved in traffic accidents while driving.

Under some pretense, we were able to convince Gloria that she should give up her car. We suggested she move into an assisted-living facility, where transportation would be available, but she resisted. "I won't have a refrigerator," was one of the arguments she used. "Yes, you will," I said, knowing that was possible as my daughter had already investigated a number of such facilities.

Finally Gloria moved into a very nice assisted-living facility — the lobby, dining room and family room were so beautifully furnished that it seemed like a hotel, and on the premises there was a beauty salon, small grocery store and exercise room. Gloria's lovely three-room apartment included a kitchen with a refrigerator. But for safety reasons, the apartments did not contain stoves or microwaves.

In time Gloria's condition demanded more attention than the staff was capable of providing, and she fell. After a stay in a hospital and a rehabilitation center, Gloria was moved to the nursing home, and has never returned to the apartment.

Gloria is my only living sibling, our other sister having died 28 years ago, and to say I miss her would be an understatement. When I came into this world, Gloria was already attending school, and during my childhood, she baby-sat me, held my hand when we walked to the park, calmed me when I woke from a nightmare. And it saddens me to stand by helplessly while Alzheimer's disease robs her of her abilities to function as the independent, intelligent, interesting person she used to be.

None of us really ever has any idea of what the future holds for us or those we love. But I take some comfort in knowing that medical advances are being made in the treatment of Alzheimer's disease. I pray that Gloria will benefit from them.

Two Alzheimer's support groups meet on the second Tuesday of each month, at Sweet Brook Care Centers in Williamstown from 3:30 to 4:30 p.m. and in the community room of VNA & Hospice of Northern Berkshire at 535 Curran Highway, North Adams, from 7 to 8:30 p.m. More information on the disease is available through the Alzheimer's Association.

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