The Reluctant Caregiver: When the Brain is Living in Another Time

Recently, when Mom asked me the date — as she often does — she said, “Cathy’s birthday is tomorrow.”

Cathy was Mom’s first cousin who was raised by Mom’s parents from the age of four.  In reality, they were sisters, although Mom was 14 years older.

The next day, Mom asked me the date.  Although she has a “memory clock” that informs her of the day of the week, the date and time, whenever we are together or talk on the phone, she asks me the date about four times.  That’s because she forgets about the clock that expresses the precise date.

“Today’s Cathy’s birthday,” Mom said.  “I wish Cathy and Kenny would come visit me, but they probably can’t afford it.”

I was in her closet, hanging up her clothes.

“Probably not,” I answered.

This would seem like a normal conversation under usual circumstances.  However, Cathy died in 2008 at age 56 after a long battle with leukemia.  It wasn’t the leukemia that killed her; a blood stem cell transplant cured her of the cancer.  But years of chemotherapy weakened her organs, and she succumbed to heart failure.

In 2008, I drove Mom to Cathy’s funeral.  She was there and mourned with Cathy’s husband, children, grandchildren and other relatives and friends.  Cathy’s widowered husband, Kenny, has since remarried.

In their later lives, Cathy and Kenny were financially secure, traveling and enjoying themselves despite her disabilities from her illness.  In their younger days, when they were first married, they struggled as many young couples do.

It is the young, newlywed Cathy and Kenny that Mom’s mind remembers. The disease of dementia has destroyed the part of Mom’s brain that remember’s Cathy’s illness and ultimate death.  The part of Mom’s brain that stores the memories of Cathy’s young married life is the one that survives.

I told the story to a friend, who asked me why I didn’t tell her that Cathy was dead.  Couldn’t she learn that Cathy is dead?

The answer is No.  Mom has dementia and isn’t capable of learning new things.  The part of her brain that remembers Cathy’s demise is destroyed.  She has stored her memories of Cathy is an area of her brain that is not yet damaged — but it’s the section that remembers Cathy’s youthful newlywed days.

My rationale is that it is better for Mom to remember Cathy as a young newlywed instead of the middle-aged woman lying in her casket at the funeral home in 2008.

Dementia destroys memories.  But sometimes it destroys the painful memories and leaves the pleasant ones to live on forever.

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I am a 50-year-old woman!

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“Now this is not the end. It is not even the beginning of the end. but it is, perhaps, the end of the beginning.” ~ Winston Churchill


 

Today I turn 50 years old.  Half a century.  Over the hill to many – especially the youthful.

If I were born in Sierra Leone, I could already be dead.  The average life expectancy for a woman there is 46 years old, according to the World Health Organization (WHO).  If I lived in Angola, Chad, or a dozen other African nations, I would be within a decade of death, statistically speaking.

If the WHO is right, I’ve got another 31 years to go.  That’s good, because I’m not going quietly.  From exploring family genealogy, I know that women often didn’t reach the age of 50 in the 1800s and even the early 1900s.  My own paternal grandmother succumbed to illness at age 38 in 1938.  She was Grandpa Thompson’s second wife – the first died in the flu epidemic of 1918.

I work for an organization that celebrates those who are age 50+.  Honestly, if I didn’t work for AARP, I might be a bit more depressed about this milestone birthday.  But from a vantage point in a state office, I have seen how people over age 50 – and especially women in that category – can make an amazing difference in the lives of their contemporaries.

My maternal grandmother – who was a central figure in my life – was 54 when I was born.  My mother was 52 when my father suddenly dropped dead at 61.  Being 50-something is not generally associated with youth in my immediate family.

As I transition to the second half-century of my life, I’m like many of my contemporaries. I’m a professional with a demanding job.  I’m a daughter and a caregiver for my mother.   I’m a big sister, and an aunt to two small children.  I’m a partner to my significant other (who turned 50 a couple of years ago).  I run a household.  I have a cat and a dog.

I share the January 15 birthday with some big names, including Civil Rights leader Martin Luther King, Jr., who didn’t live to see his 40th birthday. When I look at his achievement — he won a Nobel Prize, among other things, I feel terribly inadequate.

A few years ago I set some goals to achieve by age 50.  Let me acknowledge that I’ve not attained most of those goals.   I weigh more than I wish I did.  I have fewer dollars in the bank than I had hoped at age 50.

That’s OK.  I’m lucky.  I’m a middle-aged, upper middle-income woman.  I’m officially a caregiver to my mother, but she’s currently lucky enough to live in assisted living.  Despite the lack of marriage license, I’m a partner in a household with an amazing guy with a family that accepts me as their own (and vice versa).

I’m almost an average American woman.  If I had children at home or in college I’d be more average.

I take more prescriptions for more ailments than I wish.  A couple of decades ago, my grandparents would have been trading stories about these conditions in the grocery store.  Today I do it with my high school and college classmates on social media.

I’ve prepared for my birthday celebration.  I didn’t wait for someone to throw a party.  I made reservations at a charming inn on a vineyard where I’ve always wanted to stay.  I made reservations at the winery’s exclusive – and quite fancy – restaurant, where I’ve always wanted to eat.

Additionally, I bought myself some jewelry, and even sent myself 50 long-stemmed roses in the colors I prefer.  This shouldn’t be sad or depressing.  What it means is that I KNOW what I want and I’m personally and completely able to give it to myself.  I’ve got a terrific romantic partner who will go along on the 50th birthday adventure and even pay for it.

At 50, I know what I want.  And I don’t have to rely on anyone else – even my longtime romantic partner – to provide it for me.

I love my partner.  I also love myself.  To avoid any chance of disappointment on this monumental occasion, I made sure that I made all of the arrangements that I fantasized about.

What is the moral of this story?  I’m 50 years old!  I’m an amazing and mysterious creature!  And I don’t have to wait for someone else to give me what I need.   I can provide for myself; whatever else comes along is icing on the cake.

In 2016, turning 50 isn’t the beginning of the end. As Winston Churchill said, it’s the end of the beginning. He was talking about war — I’m talking about life.

Milestones such as this give us the opportunity to take a look at our lives, analyze where we are making a difference, and make significant changes.

Fifty years.  It’s a long time; it’s a number of years that matter.

Embrace it! Celebrate it!  I certainly am!

The Reluctant Caregiver: Picking Your Parent’s Nursing Home

FullSizeRender (2)Many years ago, I bought my mom a gag gift.  It was a crafty sign that hangs on the wall that reads, “Be Kind to Your Children, they Pick Your Nursing Home.”

Fast forward a couple of decades.  Today, I chose my mother’s nursing home.

That shouldn’t be a big deal.  I work for an organization whose mission is to “disrupt aging.”  I analyzed our local facilities a few months ago when my significant other’s father needed to be in a facility temporarily.  Ironically, I had just thrown all of that information away.

When my mom was in good health and of sound mind, I would joke with her about the time when she couldn’t live on her own anymore.  I would jovially say that I would send her to the nursing home near her house.

When the hospital where she was a patient said they were going to discharge her to a skilled nursing facility for rehabilitation, she chose the nursing home near her house.

My sister and I sounded the alarms.  That facility gets very bad scores on Medicare’s Nursing Home Compare tool.  One star!  Much below average!

Mom, like most older people in her position, wanted to stay near her home.  But most of all, she wanted to stay near her dog.

Mopsey is a Lhasa Apso who is at least 15 years old.   She got him soon after her border collie, Jessie, passed away.  He had been abandoned near the local veterinarian’s house, and the vet thought Mopsey would be perfect for Mom, who was grieving for Jessie.  He was right.  They became fast friends and constant companions, even when my mom met and married her second husband.

My stepfather passed away after 10 years of marriage to Mom, but Mopsey was still her constant companion.  Grandchildren were born (my sister’s kids), I moved further away, but Mopsey was always there. An odd dog, he wasn’t lively and high strung like most small breeds.  He was sedate, almost depressed.  Perfect for Mom.

When Mom fell and broke her wrist, Mopsey was there.   She was taking him out at the time.  Her health was a downward spiral after that.

After her fall, Mom hired caregivers to stay with her – mostly at night.  She professed a fear of falling.  But I believe a fear of being alone, and a need for someone to care for Mopsey, drove her to spend several thousand dollars she really didn’t have on caregivers who didn’t do that much for her.

Let me note it’s not the caregivers’ fault.  Mom didn’t give them many tasks, other than running a few errands, taking Mopsey out, and sleeping in her house.

Her health became so bad one of the caregivers called me in alarm.  Mom was getting worse and wouldn’t let them do anything.

My sister intervened.  She lives about 2 ½ hours away and went for a visit.  Disturbed by Mom’s condition, she convinced her to go to the closest university medical center.

That brings us to today.  Mom was in the hospital for nearly two weeks. They conducted a multitude of tests, two procedures and treated her medical problems.  It was time to talk about next steps.

Mom had been adamant she wanted to go to her hometown nursing home.  No matter how many times we joked we would send her there, my sister and I did not want her to be a resident.  We read the reviews, the inspection reports, etc.  We heard from people in the community who had opinions.  If she went there, she would get even more seriously ill.

As luck would have it, her neighbor who was caring for Mopsey needed to go out of town at the same time I planned to visit.   He inquired regarding my plans for the dog.  I learned his schedule was about to become very hectic, and there is no room in it for a geriatric pup.  I said I would bring the dog home with me when I visit.

Low and behold, Mom determined that Williamsburg, Virginia, is where she wants to reside during her rehabilitation.  Not because it’s a major retirement mecca.  But because it’s where her dog will be living.

That’s OK.  Mopsey is a sweet pup.  We have many good options for long-term care in Williamsburg.

Today, I chose my mother’s nursing home.

This is a new journey for us.  Despite the fact that I work for the world’s leading advocacy group for people age 50+, and have the world’s experts and research on aging at my fingertips, I’m scared as hell.

But then I step back and think about what it must be like to be my mother.  She was in a giant hospital, underwent numerous tests, and she couldn’t name the president of the United States.

This is sad.  I remember the day President Obama was elected, and my mom’s elation.  She was glued to the TV.  She followed every moment of the inauguration.  She commented on Michelle’s dress.

Today, she can’t remember the name Barack Obama.  It’s sad.  It’s scary.

I never had children.  It was a choice I made, not fate.  But here’s my mom, needing the guidance of an unruly teenager.

I see a challenging journey ahead. Stay tuned!

Ginger’s Soapbox: The Affordable Health Care Act

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Congress passed the Affordable Care Act, a.k.a. Obamacare, and the world didn’t end.  The U.S. Supreme Court basically upheld most of the important parts of the new law.  The world didn’t end.

There have been millions of words written about all of the dire consequences of a law that gives most Americans health care coverage.  But I want to concentrate on the good things.  Let’s go over a few:

Preventive care benefits are covered at 100%.  Regardless of your policy – and there have been many complaints about the policies available through the ACA – your well-woman, well-man and well-child services are completely covered.  No copay.  No deductible.

You can keep your kids on your policy through age 26, regardless of whether they are in school, living on their own, or married.

Medicare benefits are enhanced.

I read one article where a man complained that his ACA premium was over $400 per month while his girlfriend’s premium was completely covered by a government subsidy.  He made over $60,000 a year, while she earned $18,000.

My first thought was, “Why does this guy begrudge the woman he loves affordable health care?”  If he resents subsidizing his girlfriend’s health insurance, he certainly doesn’t want to help total strangers.

And that’s what’s wrong with this country.  It’s completely contrary to the principles under which this nation was founded.

What happened to the common good?

I subsidize my boyfriend’s health insurance.  He’s a retired military officer.  He doesn’t pay a premium for his health coverage.  I also subsidize my mail carrier, the federal prosecutor, the local FBI agent and all of the active duty military members, just to name a few.

Then there are the school teachers, state highways workers, and other government employees.  My tax dollars pay for health care for all of these people.  I used to pay for my member of Congress, but the ACA makes them buy health insurance through the exchange, and none of them qualify for subsidies.

Let’s give a crap about our fellow man, be thankful for what we have, and do something for the common good.  Acceptance.  Love. Tolerance.

Ginger’s Soapbox: Flags

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If you display the Swastika or any of the flags of the Third Reich in Germany today, you face a prison term of three years. Six million Jews were murdered during the Holocaust under Nazi leadership.  It’s not a history the country wants to remember.

Four million African natives were enslaved in the United States in the 18th and 19th centuries.  The appalling practice of slavery ended with the American Civil War, and a symbol of the South is the Confederate flag.

Let’s not forget that the Confederates were, by today’s definition, terrorists.  They staged an insurrection against the federal government.  Those who want to make the Confederates seem not so terrible say the conflict was about state’s rights.  That technically is true.  But the primary reason was the southern states wanted to maintain the right to enslave other human beings. The other reasons the states wanted to maintain their rights are long forgotten.

Descendants of Confederate military veterans say the flag is a symbol of their heritage.  Do they think we are stupid? Have you seen these people?  They aren’t historians or even genealogy buffs.  They are racists.  If the descendants of the Confederates were truly interested in preserving their history, they wouldn’t have permitted their flag to become a symbol of racism and white supremacy.

As a former journalist, I usually support the right to free expression.  But when it is something that has become so divisive to our nation and society, there should be limits.

It’s time to burn the Confederate flag once and for all.

Ginger’s Soapbox: Marriage

ringsKudos to the U.S. Supreme Court for getting it right:  people who love one another and want to enter into a marital commitment should be allowed to do so.  I’ve actually been surprised at some who have expressed dismay with this decision.  People who have often presented themselves as loving, tolerant and accepting have shown that they certainly are not.

The government got into the marriage business a long time ago.  I understand the argument that the government shouldn’t be involved.  Perhaps it wouldn’t be necessary if couples could end marriages without needing a judge to make decisions for them.

The opposition to same-sex marriage is generally attributed to religious views.  It’s important to remember that the court shouldn’t legislate religious views.  But those who are opposed to same sex marriage want the court to endorse their views.

Marriage is a civil arrangement.  It’s a legal contract.  For the more spiritual, it’s also a way of committing to their faith through a romantic and familial union.  That’s wonderful for those who make that choice.  I wouldn’t try to take that away from those couples.

It troubles me that the most religious are the most opposed to same sex unions.  One would think that those with great faith would be the most tolerant, loving and accepting of others.  Apparently that attitude applies only to those whose views and lifestyles are akin to theirs.

The majority decision said it best:  No union is more profound than marriage, for it embodies the highest ideals of love, fidelity, devotion, sacrifice, and family. In forming a marital union, two people become something greater than once they were. As some of the petitioners in these cases demonstrate, marriage embodies a love that may endure even past death. It would misunderstand these men and women to say they disrespect the idea of marriage. Their plea is that they do respect it, respect it so deeply that they seek to find its fulfillment for themselves. Their hope is not to be condemned to live in loneliness, excluded from one of civilization’s oldest institutions. They ask for equal dignity in the eyes of the law. The Constitution grants them that right.

There are lots of arguments against same-sex marriage.  None make much sense.  Some surround the issue of procreation. Those who think marriage is only about having children are shortchanging themselves.

Proponents of same-sex marriage cross religious, cultural and political boundaries.  I know a conservative Republican who wants his gay son to be able to marry to person he loves, a conservative Jewish man (also a Republican) who is married to a man, and a devout Pentecostal (a former Republican) who has been out of the closet more than decade.  I won’t even go into the Biblical references to same-sex couples.

The bottom line is this:  as someone who has been married twice and who is currently in a long-term relationship but chooses not to be married, I admire those who want to make the commitment to marriage so badly that they fought a decades-long court battle to win the right to marry the one they love.

Let’s be loving, accepting and tolerant of our friends, relatives and neighbors who want their commitment to be recognized as just as important as everyone else’s.

Ginger’s Soapbox: Caitlyn Jenner

CaitlynRegardless of what you think about transgender individuals, you have to acknowledge that Caitlyn Jenner is one courageous chick.  She gave up a life as a famous male athlete to become a woman at age 65 and pose for the cover of Vanity Fair.  It takes a real woman to do that.

Yes, Caitlyn is a real woman.  She once was a man who won many awards as an athlete.  Because she is now a woman doesn’t mean that Bruce Jenner was any less of a man.  Any attempts to denigrate his athletic prowess should be stifled.

So many of the stories and comments about Jenner are disturbing.  Most disturbing is what it reveals about society’s views of women.  Hello, it is 2015.  Why is it so appalling that a man would want to be a woman?  No one made such a fuss when Chastity Bono – daughter of Sonny and Cher – became a man.  Is it because being male is superior to being female?  Can we identify with the desire to be a man, but not with the need to be a woman?

Daily Show commentator Jon Stewart nailed it when he said, “Caitlyn, when you were a man, we could talk about your athleticism, your business acumen. But now you’re a woman, which means your looks are really the only thing we care about.”

Sadly, Stewart was dead-on when he said: “Caitlyn Jenner, congratulations. Welcome to being a woman in America.”

I didn’t choose to be born female, but I’m glad I was.  I’ve always supported equality between the sexes and worked hard to overcome stereotypes that hold women back.  This story demonstrates we have a long way to go, but we are lucky to have a high-profile advocate join the team.