Walking with my mother in her heart-breaking decline

All life cycles have watershed moments, times when another bridge has been irrevocably crossed. In the life of a child, that moment is often a joyful one. But for an elderly parent, life proceeds in reverse, leading often to sorrowful conclusions. 

My mother Liz, who is 93 years old, reached one of those watershed moments one night three years ago. 

We had moved my mother from Milwaukee to a senior housing complex near our Madison home five years earlier. My wife Jean and I had visited her twice that Sunday to address various issues. She seemed strange, but we weren’t yet seasoned enough to understand what was wrong.

After her third call, we returned to find Mom sitting in her nightgown on her bed, with three television and cable system remotes and three cordless telephones alongside her. We realized that something was happening.

Jean began to remove the clutter, which snapped Mother out of her stupor,

“Don’t touch those,” she said anxiously. “Those are my phones!”

Some were her phones, and some weren’t. Due to their similar shape and color, she could no longer tell the difference. We bundled her up and took her to the nearest emergency room.

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More than 10 million adult children over 50 care for aging parents, according to a 2011 study by the MetLife Mature Market Institute. Baby Boomers comprise the majority of caregivers. The number of parents cared for both physically and financially by their kids has more than tripled over the past 15 years.

Not surprisingly, daughters tend to provide more care than sons and suffer more financially because of it. On average, the amount of lost wages, pension dollars and Social Security benefits for women forced to leave the workforce early to provide care totals $324,044, according to the study. Men suffer less financially, but it still costs them an average of $283,716 in aggregate salary and benefit losses to care for elderly parents.

A disproportionate number of boomers caring for parents are gay and lesbian, according to John George, health care administrator for Saint John’s On The Lake, a retirement community of 330 residents on Milwaukee’s east side.

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Upon reaching the hospital that Sunday night, my mother was diagnosed with dehydration and a urinary tract infection, both of which accounted for her confusion. But we would soon discover she also suffered from transient ischemic attacks, often called TIAs or “mini-strokes.” Those would lead to more dire consequences. 

TIAs are caused by blood clots that come and go in the brain. Some are relatively harmless, while others can be precursors to larger, fatal strokes. A series of TIAs followed by a large stroke killed Mom’s older brother Harold decades earlier. We felt that a similar outcome was possible, if not imminent, for her.

While doctors worked to get her situation under control, we made arrangements to move Mom temporarily to a nursing home for rehabilitation. A former RN, my mother had worked at Sunrise Care Center on Milwaukee’s south side until she was almost 86. We thought she’d be comfortable with the transition.

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Transitions to some level of assisted living are often the most difficult things for families to cope with, according to Elaine Dyer, a registered nurse and administrator for the Jewish Home and Care Center, a 160-bed retirement community also on Milwaukee’s east side. Large families often have the hardest time agreeing on what should be done with an elderly parent.

“When there’s more than one child, there’s always more than one opinion,” Dyer says. “As caregivers, we need a point person whose guidance we can rely on, and that person needs to be the patient’s health care power of attorney in order to make the right decisions.”

Dyer’s own mother was a resident at the Jewish Home until she passed away from Alzheimer’s disease last October, and the administrator is acutely aware of how hard the “little losses” of cognitive decline can be on family members.

“Watching cognitive decline is harder than watching physical decline,” Dyer says. “The elderly begin to lose the abilities you gain as a child, including swallowing, talking, walking, bowl and bladder control.”

In terms of providing care, Wisconsin’s 323 nursing homes serve only about 5 percent of the state’s population over 65, Dyer says. The surprising statistic is mostly due to finances. Owing to the recent financial recession, admissions to skilled care facilities have declined over the past four to five years, because too many families need their parents’ Social Security checks to make ends meet.

And then there’s the cost of putting those parents in a skilled care facility.

“The cost for nursing home care is $8,000 to $10,000 a month, and even the wealthiest person who has saved for it could one day run out of money,” Dyer says.

But before that happens, adult children should make sure they understand what their aging parents want and then make those ultimate decisions based on that guidance, she adds.

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Mom spent two weeks in the nursing home, eventually returning to a variant of her former self. But we knew that bridges had been crossed and things would never be the same again.

During my mother’s nursing home stay, we found her an assisted living facility on Madison’s west side. We moved her out of her senior apartment, disposing of furniture and other things she no longer needed. During the grueling two-week process, we discovered clues to her cognitive failure that weren’t previously apparent.

Dozens of unopened bottles of generic acetaminophen and countless file cards and paper scraps with duplicate addresses and phone numbers she didn’t want to forget filled nooks and crannies. We discovered boxes of junk mail — her “bills” as she called them — including some stored in the unused dishwasher. We found cash in the refrigerator.

Mom appeared to be settling in nicely to her assisted living facility, making new friends and regularly eating a healthy diet, something she had also stopped doing in her apartment. There were even activities and outings, but over the course of two years we could see that she had started slowing down.

When construction began on the facility’s new addition, we saw her confusion and anxiety increase. A series of three UTIs in as many months seemed to send her to the moon and back again — not to mention the hospital — on a regular basis. 

George notes that a change in a senior’s environment can result in “transfer trauma” and a large percentage of sufferers are usually dead within a year. When her strange behavior continued, we began to wonder just how long her future would be.

My mother called me on the telephone last week. 

“Mike? This is Grandma,” she said. “If you are out can you stop by? I haven’t had a working phone all day.”

And so, once again, it begins. I don’t want to spend Mothers’ Day at the hospital this year, but maybe just having one more Mother’s Day anywhere is the best I can hope for.