Dementia is a Thief

Losing your mom is tough. Especially when you lose her more than once.

Mom started showing signs of memory loss and confusion four years ago. We were all concerned about her being alone in our childhood home in Summit Grove, Indiana, so she moved to Florida to live with my oldest brother, Dick, and his wife, Paula.

After about 18 months, we again worried about her being alone while they were at work, so she moved into a very nice assisted living facility a few miles from them. She had a private room, and her meals were served in a lovely dining room. She had bird and squirrel feeders outside her big picture window. There were activities and social gatherings. Lots of potential friends lived there, and the staff was great.

And being the thief that it is, dementia sneaked in and robbed her of the ability to enjoy it. Mom had never been a complainer, but suddenly everything was “stupid.” She never did care for Bingo, but she didn’t give most of the other activities a chance and never once rode the facility’s bus for excursions. But like it or not, this was her new home.  

So she stuck with the things she knew. Until they became foreign to her. Mom had always been an avid reader, devouring multiple books each month. The thief robbed her of that. First, she struggled to read cursive writing, then eventually couldn’t read anything. She blamed it on her attention span. She put the books down for good.

When she couldn’t remember how to use her iPad, she declared it was “stupid” and set it down permanently. So, our connection via email, Messenger, and Facebook was also taken away. Before this, I could count on Mom to see what I posted on Facebook and make witty, sometimes even snarky, comments.

In 2016, from the Bahamas, where milk was extremely expensive, I posted, “In the Bahamas, I drink my coffee black.”

Mom commented, “Cheapskate!”

Comments and interaction on Facebook started fading as her mind did. I felt the loss.

Throughout my adult life, Mom loved talking with us on the phone. I would call and get updates on my siblings and their families because we all called Mom, but not each other so much. Life was busy.

In the past few years, phone calls became nearly impossible. She couldn’t hear us and accused us all of talking too fast. She blamed her cell phone, which, like her iPad, was “stupid.” So, we got her a landline with a phone that had our pictures on buttons she could just press to call us.

It had a speakerphone, which worked great... until it also became “stupid.” After just four months, she declared she didn’t want any phone. So those of us living far from her were essentially cut off. I really felt that loss.

We all stepped up our visits, and my brother Steve, sister Lynn, and their spouses moved to Florida to be near her.

It was better visiting in person. Until it wasn’t.

Dementia is a thief. What an accurate metaphor. The evidence of this crime is clear-cut, and the list of stolen effects is too long to list.

Her sense of humor. Gone. Her independence. Vanished. Her abilities. Dissipated.

And probably saddest of all, the thief stole her history.

When we visited in April, she pointed to the picture on her shelf of our dad, her husband for almost 47 years, and asked, “Who is that?” I explained, but she looked at me like I was lying and shrugged.

The painting I did of our childhood home was not a house she recognized. She gestured to it and declared, “They say I raised seven kids in that house!”

She looked at me quizzically, with maybe a little recognition, and said, “Can you believe that?”

“I sure can,” I replied.

Being erased from your mother’s memory is a punch in the gut I wouldn’t wish on my worst enemy.

When I visited her in June of this year, she didn’t call me or my husband by name. We were “him and her.” She struggled to form her thoughts into words, so mostly she just smiled and shrugged. But she knew we were her family and enjoyed our company. We did what we could with her, which, given her inability to hear and form words, was very limited. Playing Rummikub was no longer possible. 

I definitely felt the loss when we had to return home.  

Inseparable sisters

My mom was a fantastic mother and grandmother. She had seven children, and if I am doing my math right, 20 grandchildren, 18 great-grandchildren, and 3 great-great-grandchildren.

She was Grandma to many. Even to some random guy who drove by her as she was out for her mile walk one morning about 10 years ago. She was walking up the road from her house in Summit Grove to the highway, which was a half mile away. Not ideal, but it’s not a busy road.

“Do you need help, Grandma?” he asked as he pulled up alongside her. “Do I know you?” Mom asked him.

She was not his grandma, but with her physique, posture, and white hair, she was the poster child for grandmas everywhere.

The quintessential grandma to so many... and a loving sister to seven siblings.

Born one of eight Benson children, Mom had four brothers: Jack, Raymond (who we all called Uncle Frog), Jim, and Bobby.  And three sisters: Mary (who we all called “Aunt Sis”), Shirley, and Linda.

And since they were preceded in death by their siblings, Wanda and Shirley were the last two left in the Benson family.

Shirley was 13 months and 10 days older than Mom. Growing up, they did everything together. Whether it was birthday parties, school, or clubs, the two were inseparable. My research of old newspapers rarely mentioned Shirley without Wanda and vice versa.

As young girls, they once rode their bikes over 20 miles from Clinton to Cayuga... word was there were boys they wanted to see in Cayuga. Mom always said Shirley persuaded her to take that ride, telling her it was just over the next hill... over and over.

Shirley became a mother as a teenager. She had her son, John, and lost a daughter just after birth. She wanted more children but had several miscarriages. Mom became a mother about three years after Shirley did and would have seven of us in the next 12 years. 

Because Mom had so many children, I believe Shirley was sometimes envious. At least until she spent more than a little time with us. With all of us talking at once and vying for attention and laughs, we were “a lot.”

As an adult, when I came home to visit, I could count on Aunt Shirley coming to see me at Mom’s. Of course, if too many of my siblings were there, she would never stay long. Again, we were a lot.

Mom lived in Summit Grove, and Shirley lived in Shepardsville, about 10 miles apart, and they drove to visit each other multiple times a week. 

Just like when they were kids, they did many things together. They loved going out for lunch, and they played cards and dice games in weekly groups.   

They took a few road trips together, including Branson, MO, to see some country and western performers.  

There was no denying that Wanda and Shirley loved each other.

And they loved to argue:

“What did you have for breakfast?”

“Cereal and a banana.”

“You can never just eat one thing, can you?”

“I DID have just one thing. Cereal and a banana!”

And another one:

“Well, at least I don’t say ‘PURDY’; I say PRETTY!”

“I do not say ‘PURDY.’ You do.”

“Whatever!”

Minutes later... “Oh, look at that... how purdy. Um, I mean pretty.”

Rummikub anyone?

After our mom lost Dad in 2003, Mom and Shirley’s visits became more frequent. Somewhere along the line, they started playing a game called Rummikub, a fast-paced, tile-based game that uses elements of Rummy. Players use the tiles to make Runs (consecutive numbers of the same color) or Groups (the same number of different colors).

Man, did they love that game. They would play for hours, and when it was just the two of them, they played so fast. They would take their turns, not waiting to ask if the other was finished because “if she had another move, she can just make it next turn.”

That might sound like they were just playing for fun. But they were competitive to a fault. They kept score and could always remember who had won the last time they played. And the time before that. 

They each had a game set, and when they wore the numbers off the tiles, they got a new one.

When Mom moved to Florida in 2022, the two inseparable sisters were suddenly separated by 900 miles. They talked on the phone, but they missed each other, and they missed playing their game.

Mom had family and friends in Florida to play with. Before she moved, Mom asked our cousin Jean to play with Shirley. Jean is on our dad’s side but didn’t hesitate. She went to Shirley’s at least once a week to play.

When she moved into assisted living, Mom took her Rummikub game. When someone came to visit, it was only a matter of minutes before she asked them to play.

Eventually, dementia robbed her of that ability, too.

In August, my husband and I visited Aunt Shirley in Indiana. Mom wasn't lucid enough for me to tell her I was going to see her sister. I just felt it was the right thing to do. Be Mom’s proxy.

Aunt Shirley was in a nursing home, mostly due to physical ailments. She was so happy to see us. She asked about Mom, and I told her Mom was probably doing a little worse than she was. And in that competitive sister spirit, my aunt assured me, “No one is doing worse than me.”

We had planned to go see Mom again in late September, and then came the call from my brother saying that Mom had a very bad UTI and was going to Hospice for treatment. This measure was due to her advanced dementia, and they could give her antibiotics by IV, which was not an option in her “home.” So, Walt and I headed to Florida.

To say that Mom went downhill fast would be an understatement. The doctors explained that a UTI in someone with dementia can trigger delirium, a medical emergency marked by sudden confusion and altered awareness. “Similar to breaking a hip, it can contribute to poor outcomes,” they explained further. And just like that, we were losing Mom.

She was moved back to her home for end-of-life care, “with her children by her side,” as they say.  After a couple of days, the hospice nurse said that Mom may be waiting for someone, and even though Mom had been calling my sister Lynn “Shirley” for weeks, we thought it might be the real Shirley she needed to hear.

I asked Shirley’s daughter-in-law to call us from Shirley’s room, and when she arrived at the nursing home the next day, they were taking Shirley to the ER in an ambulance. I guess Aunt Shirley was showing us that no one really was worse than her.

The next day, my sister Karen and I worked a puzzle I had sent to Mom a few years before. The puzzle was the last picture taken of Mom and Shirley before Mom left for Florida. They were smiling their beautiful, matching smiles, each wearing a striped shirt, and it was a 500-piece puzzle. What was I thinking? Mom had never solved the puzzle. She needed Karen, who is a jigsaw master.

Working on the puzzle was therapeutic. As we worked on it in the lobby, where our mom was getting closer and closer to dying, we shared memories of these two amazing women. I teased Karen, “What if they both die the moment we finish this?” Karen saved the last piece for me; we just stared at each other. Finally, she put the final piece of Mom’s striped shirt into place.

The next day, Aunt Shirley passed at 5:30 AM, and our mom died at 2:00 PM. Inseparable in life and death.

I like to think Aunt Shirley and Mom are together again. Playing Rummikub... and arguing just a little.