#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.





I am a 50-year-old woman!


“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!