The World According to Ruth

An Alzheimer’s Blog

Momma’s journey into dementia began long before most of us realized a family trip was planned.  Like Alice down the rabbit hole, this experience with her continues to be full of surprises, wonders, fear, anxiety, apprehension, and joy.

It became official in 2005, when the doctors told us – her 4 children – that our mother had Alzheimer’s disease.

Momma is 90 years old now. She lives with me, and I take care of her, with the support of my siblings, family and a wonderful hired aid. I dress her in the morning, fix her meals, bathe her, and put her to bed.

This blog is about everything that happens in between. It’s about my life with my mother Ruth Dennis – the woman I sometimes call Cookie, Mz. Ruth, but mostly just Momma.

It has led me to a place of knowledge and happiness. The things she says and does, they make me burst out laughing as much as they make me burst into tears. Hopefully, this ride is taking me to a future place of peace. Sadly, for my mother, it is often a place of fear and confusion.

-Jo Ann Bell

Momma enjoys her quiet moments, and I relish the peace. By Jo Ann Bell

“No, I am not taking these off.” Momma was doing more pleading than pushing during one of our nightly battles as I changed her disposable underwear.

“You cannot take these from me! They are not dirty. Look, all you need to do is wash them.” She pelted me with all this resistance, while taking wadded up toilet paper in an effort to wipe the diaper clean. She had a point to prove.

Finally, in desperation, I took the sides of the underwear, quietly tore them apart, and removed the whole thing from her body. I put a fresh set on her, trying to focus through my exhaustion.

On some days and nights, I find the effort outweighs the benefit.  “Keep them on,” I think. When she puts up her fights, I use that simple mantra to fix things in the short run. “You will forget that we had this episode in a little while anyway, Momma, and off they will come.”

We both win those.

Ruth takes in the tulips behind our house in West Oakland. Dementia makes it hard for her to remember her children, but Momma's love for this beautiful tree endures. By Jo Ann Bell

My 3 siblings and I often become fictional or rearranged members of Momma’s imagination. Momma once told my youngest brother that he was “found by grandpa at the poker game.”

I loved it when she said to me, with wide-eyed earnestness, “I want you to remember you are just like a member of the family. Don’t you ever forget that.”

To my further delight, when I was reminding her about who was who at a recent family gathering, she told me that my middle and older brothers weren’t her children. “No, those can’t be my sons. Not those old men. Not with all that gray hair. What are you talking about?”

I have often become her mom and her twin-sister, but never her daughter. When I would pick her up at the Alzheimer’s Day Center, the other clients would yell out “Ruth! Your mother’s here!”

What’s a caregiver to do? I imagine these pictures in her mind are safe places for her to retreat. Maybe she remembers and wishes to my brothers and I tucked away safely in her head as little snot-nosed kids begging for attention. Sometimes I tell myself that’s why she can’t picture herself with children who are now graying adults.

Maybe Momma is on to something. Those were indeed carefree days for all of us. And when things get hard here with Mz. Ruth, looking back is for me like a little daydream vacation.

Mz. Ruth feeds her birds. By Jo Ann Bell

Last week, Momma and I visited Cousin Bernadette, who is in a nursing home suffering from ailments associated with dementia.  It was a pleasure to see her, even though Momma really didn’t quite comprehend the reason for the visit or Cousin Bernadette’s disability.

To put a loved one in a facility, either temporarily or permanently, is a decision that plagues many families.  It is a decision that should not be subject to the judgments of outsiders.  Many times, families choose nursing homes based on what’s most convenient for everyone except the person being sent to live there.

I try to make decisions that will appease everyone. That’s not always the best mode of thinking. I worry a lot about how my friends and family would react if I placed my mother in a nursing facility. Between my brothers and I, I am the primary caregiver. Momma lives with me, and although my family helps, I am the relative who tends to her needs the most. Still, when I weigh this incredibly heavy and difficult decision – to keep her here or to take her there – I am filled with anticipated guilt.

Mz. Ruth herself has come within minutes of being moved to a place I call “Shady Pines.” Now, that’s not a real place, at least not to me. It’s a threat I conjure on those days when Momma has thoroughly plucked my nerves. I think about Shady Pines a lot on those days when she gets combative, confrontational, or hard to physically manage.  The days may be long and the nights may have been longer.

Watching Momma enjoy her simplest pleasures reminds me why I keep her by my side. By Jo Ann Bell

But then I look at the way she enjoys the simple pleasure of an ice cream cone, or her love of nature and animals. Or the way she might for a single moment express love.  I realize that, for now, Momma’s love of life is big and special, and that she deserves to be free. Placing her in a nursing home would deny her that freedom.

And so we continue our life journey together – Mz. Ruth and I, here at home.

Mom had a bad fall last year. She broke her shoulder and her wrist.  When she came home from the hospital, she was patched up in splints, wrappings, and a sling. Each morning I stepped into her room to help Momma start her day, I was welcomed by the sight of her having ripped everything off.

Here was our dance: I would painstakingly put it all back on her, gently scolding her even as I used the softest touch to keep from aggravating her injuries. Then, overnight she’d unwrap herself with the deft efficiency of a child tearing into a gift on Christmas morning.

The orthopedic doctor and I agreed to a plan b. We decided a cast would be the only way to contain her curiosity and divert her determination in removing the menace.

The cast was good. Ruth was better.

Momma was determined to now figure out how to liberate herself from the block of plaster.  The aid and I would find her quietly sitting, like some mad concentrating scientist, diligently picking and poking at the cast, scanning for vulnerabilities, searching for the smallest opening or tear that would allow her entry.

I would ask her, “Momma, what are you doing there?”  Never one to be dishonest, she would reply, “Trying to get this thing off. Can you help me? Do you have any scissors?” She asked the visiting physical therapist, “Can I use your scissors?”

She was relentless in her mission to extract herself. She once quietly asked the assistance of a young man from the neighborhood as he walked by our house. “Hey, come here a minute,” she called to him from the porch. “Do you have a knife or a saw or something?  I want you to help me get this off.” He politely told her, “Ms. Ruth, your daughter will kill me if I take that off of you.”  Ruth the Defiant hissed back, “I don’t give a damn what she does! Just help me.”

Wisely, the young man moved on.

Momma never did believe in things being out of order.  The house always had to be tidy. Her children – we were expected to be clean, studious, respectful, and quiet. Nothing was to fall out of place.

Today, my mother is just a decade away from being a century old. She still believes in the order of things, and this physical inconvenience turned her world upside down. When the cast was finally cut off (by the doctor, not by Ruth), all of us – Momma, her aid, and I – chanted, “Free at last!”

There is something about Momma and shoes.

Not any shoes. Ruth’s shoes. She imagines everyone wants Ruth’s shoes. She thinks everybody just might be trying to wear them.

One night when I was getting her dressed for bed, the shoes became more than a simple issue.  As I took her shoes off, Momma called the whole process to a halt. “Wait.  Wait a minute.  What do you think you are doing with my shoes?”  We were just starting the last of our daily routines, and I was already frustrated. I was so sure this was going to escalate into another of our nightly episodes.

“Oh, for heaven’s sake, Momma,” I snapped. “I am taking off your shoes so you can get into bed.  Give me the shoes.”  Impatient, I stood there, waiting, demanding. It’s not easy to demand things of your own mother. It’s a role I’ve grown into uneasily.

Still, she hesitated, then lobbed some classic Ruth belligerence at me. “You don’t know what I know.  Those are my shoes, and I don’t want you to wear them.”  I exhaled deeply, in that way that’s supposed to calm me down. But I was only getting angrier. “Momma, I do not want your shoes, OK? It’s time to go to bed. So just give me the shoes.”

I saw it in her eyes. This was war. Momma refused to lose.

Holding the shoes close to her chest, she pulled the covers back. Then she tucked the shoes under the covers as if she were burying treasure meant never to be found. “I don’t want anyone to come in while I’m sleeping and take my shoes.”

“I hope you know, Cookie, (I call her Cookie out loud, sometimes like a mantra, just to remind myself how much I really do love her) those shoes are not staying there.” Only then did I realize that I could have kept this simple. On previous nights, I would have just waited until she had fallen asleep to play shoe thief. Rarely has she been any the wiser.

When we were little, Momma always loved shoes. Her closet still holds more than a dozen pairs of sling backs, pumps, and flats – a style for any occasion.  She probably does not remember the torture we experienced as children when, in an effort to keep all of us in shoes, she would bring home whatever shoes she could grab on sale at the local discount store.  Lots of pairs, all brand new.

I laugh when I recall my brothers and I going to the park sporting our purple, green, and red knock-off Converse sneakers.

Those shoes really deserved to be buried under the covers.