#ReluctantCaregiver: Dimensions of dementia

Dementia-75Today my Mom thought she was in the town where she grew up.  Everyone she saw, she thought had some connection to her hometown.  It doesn’t matter that she hasn’t lived there in 40 years — that’s where her mind resides today.

While waiting for a CT scan, we ran into an aide who works at the assisted living facility where Mom lived until she moved into my house two weeks ago.

“How’s everyone in Webster?” Mom asked her, referring to her hometown deep in the West Virginia mountains, hundreds of miles from here.

Being accustomed to dealing with people with cognitive issues, the aide deftly handled the question without correcting Mom.  What I found most interesting was that Mom was so happy to see a familiar face.  Fortunately, she has forgotten that she wasn’t particularly fond of that aide.

After her doctor’s appointment, where we learned that she does NOT have lung cancer, the disease that killed her mother and maternal grandmother, we returned to my house.  On the way into the neighborhood, she asked, “Are we going to your house or my house?”   I just answered “Yes.”

That’s the wrong answer.  I should have said, “Your house.”  My answer was probably confusing to her, or shaming to her for forgetting she now lives with me.  The question was one she always asked after appointments.  Sometimes we would return to her assisted living apartment, while other times we would come to my house and hang out, have lunch, and play with my dog.

Now she lives in my house, and the master bedroom suite is set up in a way that is similar to her former apartment.  I’ve moved upstairs, cramming my bedroom furniture into a room a fraction of the size of the master.

The private aide I hired to help me take care of Mom finally convinced her to write Easter cards.  She proudly brought them to me, saying Mom would only write two, even though I bought her 12.

I glanced at the envelopes.  Her handwriting isn’t the neat cursive it used to be.  It sloped down the envelope at an angle.  But the most glaring issue was that the card addressed to my sister used my sister’s first name — but the last name of Mom’s sister.  The card addressed to my niece and nephew included their first names, but again, the last name of my mother’s sister.

Mom’s sister died in 2008.  Usually, Mom forgets that information.  She has been forgetting it for quite some time. Last week she remembered her sister’s birthday.  I couldn’t ascertain whether Mom remembered that she had passed away.  Perhaps she remembered this time.

Every now and then Mom has been confusing my sister with hers.  She remembers her sister as she was in the 1970s — a young married woman with two little children struggling financially.  I believe that is a better memory than the one of her laying in her casket, victim of a devastating disease at the age of 57.

My sister’s life is currently similar to our aunt’s in the 1970s — except it’s more than 40 years later.  She has two small children, and her husband was unemployed for a time, causing financial stress.  Their names also begin and end with the same letters and both are two syllables.  At first one might think she is simply misspeaking — but in reality she has the two women confused.

I hired two caregivers to help take care of Mom.  One is here on weekdays, the other weekends and one evening during the week.  Mom is very fond of the day aide; the evening/weekend CNA, not so much.  Every evening she asks at least five times, “Who is coming tomorrow? What time?”  Each time, the answer is the same.  When she wakes up in the morning, it’s “Is someone coming today?  What time will she get here?”

I was fortunate to be able to get the same physical therapy assistant to work with Mom at my house who helped her in assisted living.  She loves the man, and will walk through the house without complaining with him by her side.  When her caregivers or I encourage her to walk, she complains.  I finally realized why she likes him so much — she thinks he’s a guy from my hometown.  When another home health care staffer asked her if she knew him, she said, “I’ve known him all his life!  We used to go to church together!”

Mom also occasionally melds her two husbands into one person, attributing something one of them did or said to the other.  However, she can deftly tell you that she was 52 when my father died, and was single for 11 years before she remarried.  She can’t tell you how long ago her second husband died.  Sometimes she gets the month and year right, but rarely remembers in what city she resides.  She is clueless about the street address.  She will  wrack her brain for the name of the President of the United States (I think she wants to forget).   She also can remember a random comment someone said to her 50 years ago, but can’t remember what she ate for breakfast.

Many people think that Alzheimer’s and related dementia are all about memory.  Memories of past activities or people are not the only thing a dementia-afflicted brain forgets.

Mom’s physical symptoms of the disease have recently become more pronounced; namely, she eats a lot more than before.  She will say she’s not hungry, but then eat a complete meal and ask for more.  This is because she forgets she has eaten.  She also has become more incontinent.  This is because her brain forgets what it feels like to have to go to the bathroom. Conversely, sometimes she has to go to the bathroom all the time — this is because the urge to go is overwhelming and new for her, because she forgets what it feels like or how to “hold” it.

This is our new reality.  This is dementia.

 

 

 

 

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.

Ginger’s Soapbox: Poaching Dentist

palmerWhen I’m accused of being a bleeding heart liberal, I plead guilty as charged.  Those watching my Facebook page or Twitter feed lately probably think I’m an anti-hunting radical.  I’ve been appalled by the story of Walter Palmer, the Minnesota dentist who killed Cecil, a protected lion, while on a $55,000 hunting safari in Zimbabwe.  My boyfriend isn’t a liberal – he is actually a (gulp) Republican – and he thinks the guy is a piece of shit.

Believe it or not, I’m not against hunting.  I actually have some locally-harvested venison in my freezer at the moment.  I have friends who hunt deer for food and to help keep the population under control.  While I feed the deer that wander into my back yard and would never permit someone to kill them, I understand that moderate hunting is a necessary evil.  I’m not all that fond of venison – not enough fat – but a couple of times a year it’s an interesting dinner.

Walter Palmer, the Minnesota dentist, isn’t just some guy who likes to eat game.  He’s a wealthy dude – he could pay more than $50,000 to kill a lion in Africa – who likes to kill animals so that he can say he did it and take home a trophy.

There has been extensive debate online regarding whether he is a sociopath or a psychopath.  I’ve weighed in on some of those debates.

That’s because I think people who have to kill animals for fun are sick.  Yes, I know some of them.  Trophy hunters are on my Facebook friends list.  That doesn’t mean we are close pals, and it doesn’t mean they are psychologically stable.

If any of them were to engage me in a conversation on the subject, I would suggest they sit down with a therapist and discuss their need to kill animals for enjoyment.  I see photos of dead giraffes and zebras and wonder, “What the hell is wrong with these people?”

I have love and empathy for people with mental health disorders.  None of us are immune from such diseases.  But when we discuss Walter Palmer, we aren’t talking about a guy with depression or bi-polar disorder.  We aren’t even talking about a real hunter.  He didn’t go out into the wilderness and track down a wild animal and kill it.  He paid an obscene amount of money to “guides” who baited a beloved lion out of a PROTECTED habitat so that he could kill it at night via “spotlighting.”  Something that is illegal in the U.S. for deer hunting, by the way.

That’s not hunting.  That’s like opening the zoo gate and shooting the animals when they wander out.

That guy is a sicko.  He has some strange need to kill majestic, wonderful animals.  The media have dug into his background and revealed that he pled guilty to a federal charge of poaching a bear, and that he was also disciplined by the dental board for sexually harassing a female employee.

Predators are predators.  Walter Palmer is a predator.  It’s ironic that he killed – for fun and sport – a beautiful animal just for the sake of killing.

Anyone who thinks that is emotionally healthy should book an appointment with a psychologist forthwith.

Introducing Ginger’s Soapbox.

soap boxWhile I promise not to offer excessive commentary on current events, there have been a few news stories lately that I have felt compelled to write about.   Instead of inundating my readers with daily posts, I will try to space them out so that I can alienate as many people as possible on a weekly basis.  Welcome to Soapbox Wednesday.

Five news events have been significant recently:  Bruce Jenner becoming Caitlyn, the Supreme Court overturning state bans on same-sex marriage, new interest in the significance of the Confederate battle flag following tragedy in South Carolina, the Affordable Care Act standing up to Supreme Court scrutiny, and a Minnesota dentist/trophy hunter who allegedly killed a beloved lion lured away from a protected habitat.

Although these topics are inherently different, there are common themes that tie them together: tolerance, acceptance and love.

Occasionally, I will continue to ruminate on various current events.  I am drawn to those that highlight tolerance, acceptance and love – or those that expose a lack of those qualities.