Tag Archives: caregiving

What It Means to Be Human

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There is a new show on TV called “Humans.” From the title it’s not readily apparent that the show features imitation humans (“synths”). These synthetic humans are robots programmed with artificial Intelligence (AI).

The premise of the show is that these robots have become more and more like the people they are modeled on to the point of having consciousness and emotions. The leading robot character Anita works as a nanny for a family with three children and two working parents. Anita was not always as subservient as she appears at the beginning. She was part of a group of robots who escaped their slave situations and lead independent lives with each other. Anita was even “in love” with the leader of the renegade robots. Then she was captured by a slave trader who sold her to be reprogrammed as a household servant.

What drew me to the show when I saw the pilot in a preview presented by the Denver Film Society was a subplot. In this part of the narrative, one of the creators of the AI robots (played by the wonderful actor William Hurt) has retained his original model. This robot serves a surrogate son and companion to the inventor.

What drew me to this storyline and moved me was its treatment of memory. The William Hurt character was married but his wife has died. The robot was with him and his wife for years, and he retains the memories of the couple’s life together. Thus, the inventor has a companion to share his memories with.

When I spoke to the writers in the Q&A after the showing, I said, “You really touched me. My wife has Alzheimer’s and has lost her memory. I cannot share memories with her anymore. I want a synth, too, so I will have someone to share memories of Molly with.”

The show is titled “Humans,” because it is truly about what it means to be human. The robots who are meant to imitate humans in as many ways as possible serve to explore what makes a human different from a machine. If robots can think and feel and make choices just like humans, then are they human, too? And, if not, what makes a human being more than or different from a machine no matter how complex the machine’s programming?

Memories of life experience would appear to be one of those areas where humans and machines ought to differ. Human memories are, for one thing, closely tied to emotions. We especially remember what made us feel really good or bad: our wedding celebration, the birth of a child or grandchild, a beloved grandparent’s dying of cancer, a diagnosis of Alzheimer’s. These are a few of my strongest memories, and the emotional charge associated with them helps keep them alive in my brain and my mind. They are an essential part of what I call myself; they contain my life history and mark what is important enough to keep.

Molly’s memory does not work in the same way. I doubt seriously that she can retrieve any of these memories now. Yet my answer to the perennial question “Does she remember you?” is a resounding “Yes.” She recognizes me with her eyes and her smile and her touch so that I know she does remember me. Does have labels for “husband,” “married,” “family”? Probably not, but she knows me without the categories.

Not in the way a robot would have a detailed record of events and dates and circumstances. Molly is not a machine.

Yesterday we were sitting in the lounge area of the facility where Molly lives. On the wall are some standard oil paintings of countryside landscapes. Molly pointed to one. It reminded me of a place in the North of England where we had vacationed once. I spoke to Molly about the memory. “We went to a place that looked a lot like that. We climbed the hills and saw the birds and flowers.” It wasn’t at all clear whether Molly might have some recollection of that trip and what we did together.

We were, however, connected in the present. As I rose to leave I said, “I will see you tomorrow.” Molly replied, “That would be great.” This was the longest clear sentence she has uttered in many months.

Two Mothers

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OLYMPUS DIGITAL CAMERA

OLYMPUS DIGITAL CAMERA

Mother’s Day is coming up this weekend.

Our relatonships with our mothers are supposed to be complicated.  We depended on them, but we needed them to set us free.  “How is your relationship with your mother?”  keeps thousands of therapists gainfully employed.

In my journey, my relationship with my mother and with the mother of my children is not so complicated anymore.  Today, I feel awe and gratittude towards these exrtraordinary women:  my mother Winifred, who is still alive at 91, and to my wife Molly.

My mother birthed and raised 14 children who are all still alive.  Every time I mention these facts to anyone nowadays people are astonished.  Yes, families were larger back in the 40s and 50s and, yes, my parents were Catholic, but 14?!  It was a big family by any standards at any time, and it was seemingly impossible hard work for my mother or any mother.

I remember especially how mother cooked all the time.  She even made us cookies and cakes and biscuits to have as after-school snacks.  She cooked special mini-meals for some children:  meatloaf without onions for Chris, chop suey without vegetables for Gloria.  I cannot image the time and effort that went into the simple, fundamental, essential work of feeding all of us.

Mother also cooked a bland diet so that even the smallest child would eat what was offered.  Now when I visit, I go to the German sausage shop and get her what she really likes and seldom got when I was growing up.  Mother loves pickled things, including herring and beets and dill pickles (the big ones in the barrel).  Her children would have turned up their noses at sour and bitter foods so she didn’t buy them back then.

The exception was on New Year’s Eve.  Mother had always celebrated this holiday at home with her parents (she was an only child).  So we had Rhine wine and herring on New Year’s Eve with her in our home, even when were young enough to think the wine too tart.

I have realized with 20-20 hindsight that the greatest testimony to Molly’s love for me was her choosing to become a mother again after her chidren were grown.  When we met Molly was 45 and I was 35.  Molly had three children from her first marriage, and the youngest was already away at college.  I had no children from my first marriage, and Molly knew that I wanted a family.  She said early on, “We’ll just adopt.”  “OK,” I replied with absolutely no understanding of what it meant for Molly to recommit to raising chidren.

My mother worked very, very hard at being a good mother.  Molly worked just as hard.  Molly held a full-time job as an English professor.  Her position gave her flexibility in setting her work schedule so she was always there when the children came home from school.  It also gave her the opportunity to work overtime by taking on extra classes both during the school year and in the summer “vacation.”  Molly never had a summer off while we raised Mae, Reynor, and D.J.  They came from the Philippines illiterate and unschooled.  She paid for their private school tuition with her overload teaching and by serving on the Board at the school.

Looking back I see why Molly needed to take “early retirement.”  Molly worked full time as a professor for twenty-nine years and raised six children.

One of my friends says that Alzheimer’s must seem very restful for her.  Molly doesn’t have to care for anyone.  Now it’s her turn to have others cook the food and wash the clothes and nurse the sick and do the driving and pay the bills and . . .

To whatever extent Alzheimer’s seems like a break to Molly, she deserves it big time.  I hope she enjoys the peace and quiet and letting go of all the I-have-to’s.

I notice that she tires easily now.  I’ll bet she’s been tired for years.  Motherhood doesn’t allow you to get tired or let being tired stop you from doing the next thing.

Thank you, Winifred.  Thank you, Molly.  You are two of the greatest mothers ever.

May you thank your mothers this Mother’s Day.  If you are fortunate to have them still alive, call or visit.  If they have passed, pray for them or write them a thankyou note.  Share your note with your siblings.  

Mad at God

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Letting Go: A Caregivers’ Journey with Alzheimer’s

Day 127

Alzheimer’s, like alcoholism, is a disease that affects both the patient and the caregiver in every way:  physically, emotionally, psychologically, spiritually.

When it comes to the latter, my reaction to the disease has been pretty straightforward.  I was mad at God, the Creator, Master of the Universe.  I thought it was terribly unjust that a beautiful, loving, intelligent woman should be so afflicted.  That a Phi Beta Kappa graduate of Stanford with a Ph.D. from Princeton should no longer be able to write her own name.  What is the lesson to be learned from such suffering?  What a waste.

But this raises a problem.  If I’m mad at God, then God knows I’m mad at Him, and I’m going to get punished for the sin of anger.  That engenders fear and anxiety, which can block out all other feelings—even positive ones.  So, it’s an uncomfortable place to be.

And that’s exactly where I found myself in the weeks after I took Molly to the memory care facility.  Whenever anyone mentioned Molly’s spirit or God’s plan, I couldn’t take comfort in it.  I was just pissed off.

Four months later, I’ve come to some acceptance of Molly’s condition.  Part of the development of my thinking and feeling comes from many years’ experience with twelve-step programs.  Steps two and three, in particular, are God steps.  Three reads “Made a decision to turn our will and our lives over to the care of God as we understood God.”

I can say that I’m willing to believe now that God is not out to get me or punish me through Molly.  But I have trouble with “turning our lives over to the care of God.”

Does God, the Creator of the Universe, really care about Molly and me?  Most of the time, it doesn’t seem at all likely.

The twelve steps are intentionally written in the past tense.  They articulate the actual experiences of real people who have gone through the process they describe. So, some people who have been where I am have come to believe in a caring God.  That means I can too.  It may take time, maybe a lot of time.  But there is Hope.