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Alzheimer’s, my Father and Stem Cell Research

Jun 10, 2004

Only those of us who have had a close-up encounter with Alzheimer’s Disease can understand the poignancy of what Nancy Reagan has been going through for a decade.

My father–a brilliant, godly and wise leader in his community and in the Kittanning, PA Grace Brethren Church–recently died at age 94 after a 10-year decline with Alzheimer’s. My mother bore the main burden for his care and suffered through the drip-drip-grind of seeing pieces of his personality recede into darkness week afer week after week for nearly a decade.

As believers, we know God honors life and it is not biblically permitted to take the life of embryos to harvest stem cells for research. Laura Bush just yesterday on national TV reiterated the current President’s point that there is still plenty of research and progress to be made using adult stem cells, without taking the lives of innocent embryos.

I thought this piece by Doug Grow in this morning’s Minneapolis Star-Tribune says it about as eloquently as I’ve ever seen. Grow captures some of the confused and conflicting emotions of those who care for Alzheimer’s patients.

I thank God for my father’s life and the legacy he left. But I have great sadness in the memories of the shell-of-a-person he became in his latter years. The prospect of having our minds renewed and receiving glorified bodies when we enter the presence of Christ looks ever more attractive.

Here is Doug Grow’s column:

Reagan put a face on Alzheimer’s

Doug Grow, Star Tribune

June 10, 2004

Friday is a national day of mourning. But for those who love people who have Alzheimer’s disease, the term “mourning” doesn’t really fit.

Perhaps a day of celebration would be more appropriate. Or at least a day of relief.

The fact is, death is the only escape from Alzheimer’s.

The family of Ronald Reagan acknowledged the gift of death in one of its initial statements to the public.

“There’s definitely a sense of relief that he is no longer suffering and has gone to a better place,” Joanne Drake, a family spokeswoman, said following the former president’s death.

One of the most confounding emotional issues surrounding Alzheimer’s is grieving. It doesn’t seem quite right to say, “Thank God,” when the body of a loved one finally gives out years after the mind has gone.

But how can there be tears after seeing a person lose everything from memory to dignity?

Rita Teresi, a legal nurse consultant for a law firm and volunteer with the Alzheimer’s Association of Minnesota, cared for her mother for the final three years of her 10-year Alzheimer’s battering.

Mary Teresi, once an elegant ballroom dancer, a delightful hostess, a great cook, died last August, a child dependent on her daughter. Her Alzheimer’s journey paralleled that of Reagan.

At those times in recent years when Nancy Reagan would make a public appearance, “I could look at her and know exactly what she was going through,” Teresi said.

Laughing, Teresi admitted there were times that her empathy for Nancy Reagan was tinged with a little envy. For example, when Teresi was up in the middle of the night, caring for her mother, who no longer understood the difference between night and day, she suspected Nancy Reagan had professional help for such exhausting circumstances.

But Teresi said she believes there are powerful bonds among all Alzheimer’s caretakers. One of the most powerful commonalities is the guilt-laden feelings about death.

“I would be in a support group and someone would say, ‘I wish this journey would end,’ ” said Teresi. “Everyone in the group understood, but we all knew that it’s something we couldn’t say outside the group because it wouldn’t be understood.”

She learned to accept the inevitability of the course of the disease by holding on to precious moments that would pop up amid the ugliness.

“I’ll never forget some of those moments when my mother would look at me with childlike innocence,” Teresi said.

Barbara Koffel, a bereavement counselor with Hospice of the Twin Cities, understands those precious moments. Her mother is in her 16th year of Alzheimer’s.

Koffel cherishes periods of “20 or 30 seconds” where she can catch glimpses of her mother.

But the reality is this, said Koffel: “The dementia has left me with a person who looks like my mother but doesn’t act like my mother or talk like my mother. That’s the conflict. The loved one is there, but she’s gone.”

Her words are simple. But the concept is incredibly difficult to grasp.

Ted Bowman, a Twin Cities grief counselor who has written books on grieving, put it this way: “What’s different with Alzheimer’s is the death already occurred a long time ago.”

For nearly a week, newspapers and TV networks have been overflowing with largely complimentary stories about the life and times of Ronald Reagan. These accounts all suggest Reagan died Saturday.

But the Reagan of these reports died years ago.

We need to understand the Reagan who was left behind. For this Reagan, eyes vacant, perhaps diapered, could be the creator of a mighty, bipartisan legacy.

“He put a face on Alzheimer’s like there’s never been before,” said Mary Birchard, executive director of the Alzheimer’s Association. “He had a profound impact by going public in 1994.”

He went public with a poetic letter: “. . .I now begin the journey that will lead me into the sunset of my life.”

Since that letter, Birchard said, “we have learned 95 percent of what we know about the disease. The amount of research has been tremendous.”

Some political ideology also may evolve from the reality that even the First Family was not safe from Alzheimer’s.

For example, President Ronald Reagan almost certainly would have opposed stem cell research. But now Nancy Reagan, wife of a man battered by a horrible disease, has become a proponent of the research.

Given the destructive power of Alzheimer’s, perhaps the best thing we could do to honor Reagan’s memory is to call Friday a national day of understanding.