Category Archives: self care

Grief Journal Revived

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When loss rips off the doors of

the heart, or sadness veils your

vision with despair, practice

becomes simply bearing the truth.

From Allow by Danna Faulds

 

Today is Wednesday. I visit Molly now on Tuesdays, Thursdays and Sundays. Yesterday and Sunday were especially hard for me.

Molly was out of it, sleepy. I missed the moments when her eyes light up and she smiles. This time her eyes were dull, her gaze unfocused. She did not respond to a favorite poem or a well-known song. There is a real possibility that she didn’t know who I was. I saw confusion on her face yesterday at least once.

This is what I have been afraid of. I thought it was fear of her losing her ability to remember, to talk, to walk. I thought it was fear of her dying. Today it is fear that she does not know who I am and will never know me again. She will no longer smile at me and hold my hand.

I got deeply in touch with this feeling this morning while doing a guided meditation. I am taking a class in mindful self-compassion. The guided meditation involved focusing on a difficult emotion and finding where it resides in the body. Then you soften around the tension and soothe the body with touch. This is supposed to lead to being able to “allow” (accept) the emotion rather than resisting it or avoiding it.

For me, I responded with tightness in my belly and then loud and intense belching as I released that tension. Then tears.

And then the impulse to write. Some part of me still knows that this writing thing is the way for me to respond to difficult emotions.

And sharing it. In the Buddhist meditation practice of loving kindness (metta), one focuses in part on shared suffering, common humanity. What one experiences is hardly unique: at any given moment there are many, many people experiencing the same pain, the same loss, the same fear.

I sure hope none of you is feeling grief today, but, of course, we all do.

And I am grateful that I have this vast network of support and love.

Thank you.

Willem

 

Reconsidering Acceptance, the Fifth Stage of Grief

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February, 2016

In her landmark book On Death and Dying, Elizabeth Kübler-Ross described five stages of grief: denial, anger, bargaining, depression, and acceptance.   This system has become the most widely accepted way to describe and cope with the grieving process. I believe these stages present a very useful way to look at grief, and I used them throughout my book.

Today, as I am writing this, Molly is still alive. She still breathes; her heart still beats; she can still walk around; she enjoys the tastes of sweet things on her tongue and the feel of soft things she touches. Therefore, I do not speak from the perspective of one whose loved one has died.

I am, however, fully experienced in what is called “anticipatory grief.” Kübler-Ross defined this emotional state as follows: “anticipatory grief occurs when someone we love—or we ourselves—have a terminal illness. Anticipatory grief is the ‘beginning of the end’ in our minds. We now operate in two worlds, the safe world that we are used to and the unsafe world in which a loved one might die. We feel that sadness . . . we think of the five stages of death occurring for the dying person, but many times loved ones go through them ahead of the death also. This is especially true in long, drawn-out illnesses.”

I have, therefore, been in the stages of anticipatory grief ever since Molly’s diagnosis. I think and feel and write using the concepts of denial, anger, bargaining, depression, and acceptance.

Most recently, I have been reconsidering my attitude towards the fifth stage of acceptance. I have often said and written of grieving Molly’s disease that I have not yet reached the stage of acceptance. That turns out to be both true and not true.

I have certainly come out of denial, felt my anger and sadness, learned many lessons about life and death. Grown emotionally, psychologically, and spiritually during and through the process of grieving.

Now, I recognize that I have in many ways reached acceptance. When I write and speak about lessons learned that is part of acceptance. When I find Molly’s infantile behavior as both fascinating and heartbreaking, that is also acceptance.   Another part of acceptance is taking the long view: I had twenty-five years with Molly when she was healthy and fully able to do everything.

I had a common misconception about acceptance. I thought it meant that I was finally okay with Molly’s illness and decline. Kübler-Ross, on the other hand, never meant it that way: “Most people do not ever feel okay or all right about the loss of a loved one. This stage is about accepting the reality that our loved one is physically gone and recognizing that this new reality is the permanent reality. We will never like this reality or make it okay, but eventually we accept it. We learn to live with it” [italics mine]. According to that interpretation, I can say, “Yes, I have faced the reality of Molly’s Alzheimer’s.” I have even learned to live with it.

So, what does acceptance look like in my grief journey so far? I have spent many days over the last few years observing Molly’s actions. I have and become less interested in keeping her safe and content and more interested in what she does spontaneously. Molly has proven to be remarkably curious. From my perspective her curiosity stems in large part from her memory loss. Since she cannot remember an experience, Molly is always in the process of exploring new sensations. She will feel the texture of a napkin as though it is the first time she has touched such a fabric.   She will explore my hand and touch my skin and my fingernails as though she is learning about the body for the first time. She will try a handle to see if it will open the door. She doesn’t remember that the doors are usually locked: each handle is a new opportunity. This is what I am talking about when I say that her actions are both heartbreaking and fascinating.

Putting myself in observing mode helps me cope with the deep sadness of what Molly has lost. To me it is tragic that she cannot read her favorite poems any more, that she cannot remember her grandchildren’s names, that she doesn’t remember the words to the songs her father taught her as a little girl. Molly certainly does not remember what she used to do and enjoy. I seriously doubt that she ever misses reading a book.

To Molly, as I see her now, what she is experiencing right now in front of her is what is important. Accepting that reality is powerful.

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.  

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.