Touching and Feeling

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My friend Laurinda asked, “Does that cause you pain to talk about when you and Molly did things together?’

Sometimes it does create loneliness, which can be painful.  There is only one person with whom I shared that experience and she cannot remember it at all.  That makes me feel sad.

Yesterday, I heard a piece of music on the Pandora at the facility.  I said to Molly, “We heard that in Paris, in France, at a place called the Madeleine.”  It was new for me to speak the memory as though she could still understand and it would mean something to her.  It felt right to say out loud to her that we had shared something beautiful together.

I am weeping now.  That answers my friend’s question.  Yes, I feel sad.  Does that mean “pain?” I guess the pain comes with loneliness and isolation.  No one else can share that memory.  It was ours. Now it is only mine.

But, of course, it is still a memory of something beautiful, something “memorable.”  Do I still treasure and appreciate all the beautiful memories of the life we had together?  Yes.  Do I want to forget?  No.

My time with Molly is so different now.  I try as much as possible to stay in the present moment and too share Molly’s experience of the present moment.  The simplest way is to observe what she does without trying to control her in any way.

Sometimes sharing the present moment means participating in her experience.  If she is feeling my skin by touching and exploring my hand, then I relax and let her do it.

In such a moment I feel close to her: I sense a connection that is still alive.  Does she have similar feelings?  Maybe, maybe not. Perhaps she is just momentarily fascinated by the feel of skin. It seems so when she moves on to the feel of the napkin on the table and of the fabric of her dress.  She is curious about the world and exploring it through touching what is nearby.  My hand was available for exploration.

Other times she reaches for my hand and it is clear Molly wants to hold my hand for safety, for comfort, for togetherness.  She hangs on tightly when she is confused or fearful. She holds onto me while she falls asleep.

Either way I am grateful for the moments we have together now.  They are also memorable.

 

Still Molly

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I visited Molly today. I fed her lunch. I put a lined and hooded sweatshirt on her, and we walked outside halfway around the building. When we got back inside, Molly looked for a place to sit down. She fell asleep quickly with me sitting beside her. Molly opened her eyes as I got up to go. “I’m gong to get some medicine. I’ll be back.”

When I returned from the pharmacy with her probiotic, Molly was still asleep in the same spot. I whispered a good-bye and left.

They say that the residents benefit from a familiar routine: the meals are always at exactly the same time, and they sit in the same places at the same tables with the same people, three times a day every day. There is always an exercise period at the same time every morning. There is a snack at 2:30 every afternoon. There is a movie at 4:00.

I’ve got my own familiar routine. I like to feed Molly lunch. I feel close to her, and she enjoys the food. I have the (somewhat ridiculous) notion that when I feed her she gets a better nutritional meal because I choose to give her mostly protein and vegetables and skip the carbohydrates. But then I love to feed her desserts loaded with fat and sugar.

I like to take Molly for a walk whenever the weather permits, but she can’t go very far anymore. The amount of exercise she gets walking for five minutes won’t make any real difference in her health.

I like to read to her. Molly seems to enjoy this and laughs. But I can’t really tell if she understands anything. And, realistically, she’s probably too far gone to get much out of the words.

I’m used to the visit routine. It’s familiar to me. It makes me feel better. It creates the “normal” life that isn’t normal at all.

Tonight, I was reading the book Still Alice, a fictional account of a Harvard professor who gets early onset Alzheimer’s. The story was very well researched and written by a Harvard Ph.D. in neuroscience.  It is very accurate and convincing.

Several of my friends have told me that they’ve read Still Alice and how much the character reminded them of Molly.  Molly, the professor with the Ph.D. from Princeton.

They’re right in many ways. And wrong, too. Yes, Molly was a brilliant teacher and scholar who was passionate about her subject and loved teaching. Yes, Molly fought against her failing memory, was ashamed to tell friends and family that her mind was going, and was smart enough to compensate and continue working after her diagnosis.

But Molly also pretended (with my help) much longer than Alice. In the novel, Alice is very much aware of her decline and what it means. She even gets a bottle of sleeping pills so that she can commit suicide when she gets too bad.

Molly was frustrated at what she couldn’t do sometimes. She wandered and was often confused. But together we traveled and involved ourselves with family activities, often past the point when it was fully safe to do the things we were attempting.

I’d say with the twenty-twenty vision of hindsight that Molly didn’t want to admit her Alzheimer’s and her declining capacities and abilities. When I asked her if she knew she was sick, she replied, “I’m fine.” We both practiced denial.

Was this the right thing for her, for us, for me? I think so. I enjoyed our travels together, our visits to family, our participation in weddings and holidays. I was fully convinced that she did, too, even when she got lost or confused or frightened some of the time.

Now, her life is simpler, more routine, and much safer.

And I ask all the time “Is she still Molly?”

What Do I Do Now? A Caregiver’s Journey with Alzheimer’s

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Nora Gives Permission

Alzheimer’s affects the whole family, so the whole family needs to be involved in decisions about care. Sure, that’s just common sense. I’ll make every effort to include Molly’s children. All of them: the three children Molly already had when we met and the three we adopted together from the Philippines.

It sounded simple and straightforward. But that was before I understood that this couldn’t be one-size-fits-all. Each of Molly’s children would react their Mom’s illness and decline in his or her own way. And I’d be jumping through hoops trying to keep everyone happy.

Luckily for me, her daughter Nora (third of the older kids) was easy. Nora’s a doctor; she deals with illness all the time; she is level-headed and warm hearted. She was always ready to say, “I really appreciate what you’re doing for Mom.” When she visited from New Orleans, I went with her and her brother Chris on a tour of the facility. Dr. Nora pronounced it a good place and agreed it was right for her Mom when the time came.

When the time did come, it really hit Nora hard: No denying or equivocating. Her Mom had an untreatable, terminal illness. On the phone, she told me how she was coping, “I clean, and then I cry. Then, I clean some more, and I cry.” I cried, too.

On her next visit, Nora and I went together to pick up Molly and bring her to Chris’s home for a Christmas tree trimming party. We all tried to pretend that it was just the same as last year, except that Molly had to go home early. Molly was somewhat disoriented and definitely incoherent when she spoke. No one commented on it, but we all understood that it was clearly not the same.

Later in the evening, when the grandkids went to the basement to play dodgeball, Molly, Chris, Nora, and I were left looking at the tree. The mood shifted and lightened. It brought back the time twenty-nine years earlier when Molly and I celebrated our first Christmas together and Chris and Nora were visiting. It felt right and good.

Other times while I was with Nora, I was strangely anxious. I kept telling her about the unit. “It’s nice and small: it only houses fifty-two people.” “The staff is very well-trained. They’re first rate.” I repeated myself over and over compulsively.

On the way to the airport, just like in the last five minutes of a therapy session, I returned to the subject of the facility. And I realized what was happening: I wanted Nora’s approval. I wanted her to tell me that it was a good place for her Mom. And, most importantly, that it was OK that I had put her there and not kept her at home longer.

“Nora, I can tell what’s been going on with me over the past few days. I want your permission. I’m still feeling guilty about not keeping your Mom at home.” “You can let go of that one,” she said. “Thank you,” I replied.

A Loving God

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Letting Go: A Caregiver’s Journey

Day 196

After Molly went into the memory care unit, I had a real sense that my life was over.  It had certainly lost its purpose.  I didn’t see any way forward.

And I thought the stars had aligned against us in a profound way.  We were good people.  We made some mistakes, but, on the whole, we did most everything right.  We loved each other.  We adopted our three kids and raised them with the love they never had before they came to us.  We worked hard.  We cared about our students, especially, and made every effort to help them.  I was even an honest real estate dealer (I don’t recommend it if you want to make a living.)

So why all the bad stuff: my cancer, Molly’s Alzheimer’s, D.J.’s mental illness?

What seemed clear is that a loving God couldn’t be involved.  So, there were two possibilities: either God was distant and didn’t care, or God just didn’t exist.  I vacillated between the two positions.  But mostly I was plain angry with God.

I talked about this in my Twelve Step meetings, and my sponsor had a suggestion.  He and his wife had taken A Course in Miracles.  He explained that in the Course one learned about a God of Love.  One also learned that our pain and suffering, indeed, the body and the whole physical world were but illusions.  God held us in the love in which he created us, and our eternal selves were destined to be reunited with our Creator in Love and Light.

For whatever reason, the idea of being with people who believed in a God of Love seemed appealing, and I signed up for the Course.

It has led to a major shift in my perspective to where I can at least see the possibility that the following is true:  Molly’s Alzheimer’s affects only her body, which is a material shell for her true spiritual self.  Her true self is all right.  God is taking care of her, and she will be peaceful and joyful with God in eternity.

I certainly want to believe that this is true.  It is a lot better than where I started.  It also lets me off the hook.  If Molly’s disease is meaningless compared to her spiritual life, then what I did or didn’t do for her didn’t matter.  God is in charge, and God is taking good care of her.  I don’t have to worry or feel guilty.

I also have a new network of support in the ACIM group.  It’s an interesting mix.  We talk about philosophy and theology.  We talk about various forms of healing: physical, emotional, psychological, and spiritual.  We talk about spiritual experiences; insights; and small, everyday miracles.

It is cathartic.  It is comforting.  It is stimulating.  My original purpose in joining the group turns out to be true: it is good for me to be around people who believe in a God of Love.

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.