#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.

 

 

 

 

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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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