Round and Round

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This was written in 2016, two years before our mother passed away from dementia.

Lunches tire me out.  Too intense, too much repetition.

“Thank you,” she says as I set the two plates down and sit across from her.  She looks at last night’s pasta and freshly sliced apples. 

“You’re so good to me,” she says.

I smile perfunctorily as I begin eating.  “You deserve it,” I say.  It’s true.

The pasta is steaming slightly but quickly drying out from the microwave.  I start eating as she picks up her fork.  Her movements have recently slowed and become shaky, so I don’t try to pace myself to match her at meals anymore.  I simply sit for a while after I’m done until I’ve convinced myself that I’ve waited long enough to pick up my plates and take them to the sink. 

“Is there anything you want me to do today?” she asks, looking at me.  I honestly just want her to continue eating so that I can make her a cup of tea, set her on the sofa and go back to work in my office downstairs. 

“Not really,” I reply.  “I’ve got work to do after lunch, so I thought I’d put the news on for you this afternoon.” 

With no actual TV or cable in the house, we’ve found an internet link to news channels from across the U.S.: livestreams recorded and looped every two hours.  She most enjoys the San Francisco station that regularly repeats tales of woe and the occasional positive feature story from around the Bay Area.  A lifelong Californian and a dedicated news watcher, she’s absorbed as the stories fill her in on life back home, and then repeat.  She doesn’t notice, and it’s a blessing to us, this repetitious news stream.  We’re all tired of the small collection of Wheel of Fortune and Jeopardy episodes that we’ve been replaying for her these past few years.

“Well that’s ok,” she says as she puts down her fork and stares at me.  “But I want you to tell me if there’s something I ought to be doing.  It’s just that you do so much for me, and I want to do what I can do to help.”

I nod as I take another bite.  I assure her. “I will.”

She jumps to another subject.

“It’s so beautiful here,” she says as she looks out the window to Kootenay Lake just below the house. 

“I used to live here,” she continues.  “And I had a friend living in this house, before you were around,” she says.  “A friend of mine moved here, and I used to visit.  I can’t remember who though.”

She never lived here.  Born and raised in the San Francisco Bay Area, she traveled extensively throughout her life but never had a home in British Columbia.  I’ve lived here for nearly three years, however, and she’s spent months with me and my family.  Our home is a rented one. She’d never seen it prior to us moving in two years ago, but it’s now a part of her history.

“Thank you for lunch,” she says. “You’re so good to me, and I appreciate you and your husband and your children for treating me so well.”

I nod again, knowing where we’re going, resigned to it already.

“Remind me again, is this your second husband?”

“Yes,” I say, pausing before taking the next bite. “He’s my second husband.” 

“And is he the father of your children?”

I shake my head.  “No, their father was my first husband. He lives in Alaska.”

“Was he mean?” she asks, trying to put some elemental context around the dissolution of my first marriage and the absence of any memory of it.  She doesn’t remember her visits to Alaska, her many, many trips to see our family amidst the ten-year struggle of my first marriage. 

A solid rock in the midst of those years of turbulence, I can’t forget her.  Not how she kept me grounded and steady despite the uneven terrain on which my marriage rested.  Not how she kept an open mind and continued to love both my husband and me despite the challenges we faced together.  Not how she accepted the separation, then the divorce, and still loved us all.

“He was only mean sometimes,” I reply.  “Like we all can be.”

I glance up and see her nodding. Despite her disease, she recognizes the destructive power of alcohol.  Her own marriage was affected by alcohol abuse on both sides which, though less destructive in the short term than mine, certainly contributed to the downfall of the 23-year union. 

“I don’t remember my husband at all,” she says.  “Did you ever know my husband?”

My throat constricts.

“Yes, I did,” I say.  “I still do.  He’s my father.”

She looks at me, scandalized, and puts down her fork. 

“What do you mean?” she asks.  “Why do you say that? That would mean I’m your mother.  I’m not.”

I look at her and ask the obvious question.  “Well what am I to you?”

“My sister,” she says authoritatively. 

I nod in agreement.  Dementia has robbed my mother of her own history, the very memories that make her who she is.  For seven years my mother has been slipping into an altered reality where faces and places are familiar but lack all context.  According to the Alzheimer’s Association, Dementia is a general term for a decline in mental ability severe enough to interfere with daily life.  Mom has been declining to the point where she’s no longer able to cope with daily life without assistance.  My sister, brother and I provide that assistance, keeping her in our homes for one to two months each before accompanying her to the next sibling’s house. 

We are aware, and some have pointed out, that these transitions from one house to another may cause her to decline more rapidly, that these transitions may prevent her from establishing a routine, that we may be hastening the decline we so fear.  But there are no easy solutions to caring for her.  My sister, who has power of attorney over my mother’s finances and who moved my mother into a spare room to live with her and her family almost two years ago, has admitted that it is too much for her family to keep my mother full time.  So we shuttle her from one home to the next – two in California, and one in BC – homes full of children, grandchildren, dogs, cats and spouses. 

It may not be routine, but it’s stimulating. And it keeps her in our lives.  Would it be better for her to have a routine, albeit one in a long term care home?  I can’t believe that the answer is yes.  If we have the ability to keep her out of care, shouldn’t we?

“My husband wanted to keep me at home, and I didn’t want to stay at home,” my mother says.  “So I left him.” 

“Huh,” I say, spearing the pasta with my fork and rubbing it through the sauce on the plate. “I didn’t know that.”

Patients with moderate Alzheimer’s disease forget events and their own personal histories. My mother doesn’t remember that she worked throughout my childhood.  My father never asked my mother to stay at home, and while they did separate and divorce when I was 18, it was not precipitated by her leaving him.  She often tells people that she started working when her kids were older.  Actually, she started working as soon as my sister and I, twins, entered kindergarten.  With a master’s degree in history and counseling, she couldn’t wait to get out of the stay-at-home mother role.  She was bored as a caregiver, and she eagerly entered the workforce as a school teacher and counselor, a job that she kept for thirteen years until a major career change in her forties.

She doesn’t remember any of her life with my father, or even with us as children.  I suppose that’s why she considers me her sister.  She knows my face and recognizes me as someone she’s close to and trusts.  But how can I be her child when she has no memory of birthing me, raising me, or supporting me as I moved through adolescence into adulthood, married life, and motherhood? 

It’s not just her memories that are missing. Our relationship has shifted entirely.  The rock which I clung to during my turbulent first marriage has transformed into a piece of driftwood bouncing around the waves of her failing mind.  Now I’ve become the reluctant caregiver, the rock in her topsy turvy world. 

“This meal is wonderful,” she says, picking up a slice of apple.  “Thank you.  You always give me just the right amount to eat.” 

She’s so completely supportive of me that I seem to be immune, so far, to some of the degradations of the disease.  As Alzheimer’s progresses, patients experience personality and behavioral changes, including suspiciousness.  My mother, who had always been easy going and one of the simplest house guests, now becomes quickly irritated and distrustful about things like portion sizes.  When I’m at a meeting or out of the house at dinner time, she never approves of the amount she’s given, despite the fact that my husband and kids give her the same amount as I would have.  They tell me that she eyes her plate then eyes their plates and demands to know why she hasn’t been given as much as everyone else.  So they scramble to fill it with more, and she ends the meal by reproaching them for serving her too much. 

The overwhelming love and gratitude I have for my mother leads me to a place where I will care for her unconditionally. But it’s harder on my family.  For my husband, it’s an obligation and the fear of maybe this is where my parents will end up.  So he takes it on through a sense of duty with a touch of compassion. For my children, it’s certainly obligation and hopefully also a respect for the humanity behind the illness.  When they were little, my mother spent hours reading to them, playing board games with them or just adoring them as they moved their little bodies around the room in a whirlwind.  In the past few years, the roles have reversed, and I’ve seen my children attempt to play board games with her (she can’t remember the rules anymore, so they invent creative ways to play), take her for walks, and prepare her tea when they find her in the kitchen restlessly searching through cupboards.  Searching, as if for answers.

My mother has always been a seeker. 

After my parents divorced, and in spite of warnings from family and friends about stability and security, my mother took an early retirement from the school system to become a trainer, then CEO, of an international foundation, seeking more meaning in her life and career.  For the next 20 years, she traveled all over the world and connected with people throughout the U.S., England, New Zealand, and South Africa.   She is still highly respected and loved by many for the type of work she did and the way in which she did it.  People from around the globe contact my sister to check up on her and to see how she’s doing.  It’s hard for them to understand the extent to which they have been erased from her life. 

Her life, and her relationships, have been waylaid by this disease.  Dementia has interrupted my mother and has attacked or absconded with almost everything that was ever important to her. 

“Is there anything going on today that I should know about?”  My mother breaks the short silence with a familiar question. 

“No, Mom.  I think I’m going to put on the news for you this afternoon while I get some work done downstairs.”

She nods then speaks. “Now tell me again, you have two children?” 

“Yes, two children.  My son is 18, and my daughter is 15.” 

“And your husband, is he their father?”  She looks at me, trying to fit the pieces of my life together in a way that makes sense, a way in which she’ll remember them.  It’s useless.

“No, Mom. Their father lives in Alaska.  He’s a good man but it just wasn’t a good marriage.”  I try to explain my failed marriage in a way that will prevent a more detailed and also meaningless discussion. 

“My marriage wasn’t good either,” she says.  “I don’t remember my husband, but I think he wanted to control me.”

I’ve stopped trying to defend my father.  It troubles her that she can’t remember and that I’m correcting her, and it’s emotionally difficult for me to grapple with the weight of his exclusion from her life.  It also points to a day when I won’t be a part of her memories either.  I’m not there yet, at least not totally.  While I may not be her daughter anymore, I’m still recognized and important to her.  And that means a lot.

Living with someone with dementia means that I relive over and over the events that have shaped my life, and her life.  I’ve given up the rigidity and righteousness of my memories to allow a more flexible, adoptive approach to reminiscence, following her lead as she remembers. Or doesn’t.    

I take a bite of my apple and respond. 

“You did pretty well for yourself after you and he divorced,” I say.

She looks surprised.  “Well, yes, I did. I just went after what I wanted and lined it up and did it so that no one could say anything about it.” 

She pauses and I see her struggling to find the words she wants to say.  Another result of this awful disease is the loss of vocabulary, the inability of my mother to articulate what she’s thinking. Aside from the actual memory loss, it’s probably what frustrates her the most.

“Who would want to say anything?” I ask her.

“Oh, lots of people who thought I shouldn’t do what I was doing.  I was teaching swimming, but people thought I shouldn’t be doing that.” She’s simultaneously proud and flustered. 

During my mother’s university years, before she was married to my father, she competed as a synchronized swimmer. She was a national duet and team champion. Her team won gold at Nationals and the Pan American games, traveled around Europe and Asia to showcase the sport and appeared as back-up swimmers to Esther Williams on the Ed Sullivan Show.  Her actual career is murky in her mind, but she remembers the swimming.  And she remembers that she travelled a lot. So her mind transforms her memories into the fact that she must have taught swimming. 

Though she didn’t teach synchronized swimming, my mother was a teacher. She was also a trainer.  She was a coach.  She was a guide for many people throughout the world.  My mother never let people tell her what she could and couldn’t do, and she helped many, many people gain control over their lives when they felt they’d lost it.

“I don’t think you’ve let too many people tell you what to do, Mom,” I say in response.

She chuckles and smiles at me.  “You’re so good to me.” 

I hear this many times a day, and I always give her the same weary reply. 

“You deserve it, Mom.”

“Do I?  Well thank you.  I don’t always think so.  I think sometimes I’m just a pain in the ass.  My brain doesn’t work so well now,” she says. “And people get frustrated with me.”

It’s true.  All of it.  To say that my brother, sister and I, and our families, don’t get frustrated with my mother is a lie.  Her brain doesn’t work so well.  We get exhausted and frustrated and angry and fearful and depressed.  Dementia is a slow motion tragedy that waylays innocent people from their normal aging trajectory and wreaks havoc on them and their loved ones. 

As a genetic disease, my siblings and I know that we are at risk.  My husband, whose grandmother fell to this disease, dreads it as much as we do. None of us wants this.  None of us wants our kids to be burdened by caring for us. 

Yet as I sit with my mother, eating lunch and discussing the same faulty memories over and over, I can’t help but feel as if my world has been blessed just a little by this.  Maybe it’s the opportunity to recognize that I’m not in control, not as much as I think I am.  Maybe it’s that I’ve learned a new level of compassion as I face bed wetting or arguments about personal hygiene.  Maybe it’s the opportunity to care for my mother as she cared for me.  To ensure that she’s got what she needs to leave this world in the same way that she prepared me to enter it. 

My mother still has a great sense of humor. She loves to sing and dance.  She loves to accompany me on dog walks.  She loves the news.  She loves living. 

I eat my last apple slice and tell my mother that I’m going to head downstairs soon to work. 

“Is there anything planned for this afternoon?” She looks at me as she asks, and I shake my head.

“Nope, nothing planned.  We’ll probably take a walk with the dog after I’m done working though.”

Her face brightens.

“That’s terrific,” she says. “Just give me some warning so that I can get ready when it’s time to go.”

I will.  I always do. 

I stand up, pick up my plate and cup and move to the counter.  Her plate is still half full.

“Of course.  I’ll let you know when it’s time,” I say.

I start the electric water kettle for Mom’s tea then move into the living room where I turn on the news stream.

Lunch is over.  The cycle will repeat itself tomorrow.

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