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It rankles me when friends, neighbors, and other caretakers at the nursing home express sympathy for me. These sentiments are kind and compassionate. I know that people mean well, but they can’t possibly understand my chagrin at seeing the one I love suffering every moment of her waking life. However, it is Joan who needs their sympathy. She doesn’t know where she is, she has lost her own history, she hasn’t the ability to express her needs, her discomforts, her heartbreak. If she feels pain she can’t express it. Often she appears agitated. Sometimes she glowers angrily,and  frequently she seems terrified. She is never peaceful, but always seems disconsolate. We both suffer the loss of our past together, but I, at least, can express my chagrin. Joanie is trapped in a dark and terrifying forest. The most frustrating fact of all is that we are both powerless to repel the force of the disease. The Greeks were right; we cannot change the force of destiny.

Recently I sent an email to a perceptive friend I’ve know since college days. To communicate the tragedy of Joan’s condition and my helplessness to help her I cited a sentence from Dorothy Parker — “What fresh hell is this?” Before the end of the day, my friend wrote back:

“What fresh hell this is,” you say, but of course you know that it is YOUR hell and not Joan’s, as she has already passed on to another state. I wonder what life lesson it is that you are meant to learn from this experience with Joan. My own life lessons – which I struggle with mightily on a daily basis — are patience and acceptance.

I think the ancient Greeks and my articulate friend are both right. We can’t change destiny, and the only way to face this force is with patience and acceptance.

The Strawberry

I have neglected my blog for the last couple of months. I think it’s because I had fallen into a state of resignation. I continued, of course, visiting Joan at noon and at five every day. Our time together affirms the hard facts: the ravages of dementia leave us no hope; no improvement is possible, and deterioration is certain. Joan is disabled, lost, and confused, and I feel the same way. After five years of watching the one I love slowly slip away, I became resigned and accepted our fate. Resignation, I have learned,  is a dead end — a brick wall. For me resignation was sullen compliance. As a result, I fell into a morass of woeful grief . I also lost the my pathway. I realized this when I found myself mindlessly watching hours of insipid afternoon TV shows. Neither Judge Judy nor HGTV soothed my chagrin, but I watched nonetheless. I knew that I was on the wrong pathway and began to fight against feeling sorry for myself. The Boston Marathon and a neighborhood friend helped me to clear a pathway out of my morass.

Esther is a friend and neighbor. She and I were at a seminar the morning after the horrific attack at the Boston Marathon. The title of the seminar was “Music for Mourning.” We listened to a moving requiem by English composer Lauridsen. The sadness of the day affected all of us. At the end of the discussion and analysis, Esther stunned the members the group when she recited a koan — a poetic literary form of Buddhist poetry. This koan was a parable spoken by the Buddha.

A man traveling across a field encountered a tiger.

He fled, the tiger after him. Coming to a precipice, he caught hold of a the root of a wild vine and swung himself down over the edge. The tiger sniffed at him from above. Trembling, the man looked down to where, far below, another tiger was waiting to eat him. Only the vine sustained him. Two mice, one white and one black, little by little started to gnaw away the vine.

The man saw a luscious strawberry near him. Grasping the vine with one hand, he plucked the strawberry with the other.

How sweet it tasted.

The koan struck me in the gut. It was an enlightening moment. It described life for me and for Joan, and it taught me that even in the most dire personal circumstances victims can experience shards of joy, pleasure, consolation. I know there is no recourse for us, but there are moments when I experience peace and consolation. During the spring and summer months I wheel Joanie outside the nursing home. She loves being in sunshine; she raises her face to the sky like a daisy  and smiles gently. I recount stories of our life together — our first apartment, our first house, the birth of our son. She can’t respond, but her expression becomes pacific, beatific. The birds sing and the fragrance of blossoming trees envelopes us. At solitary times work often draws me away from worry and fear — gardening, jogging, writing. A new  sense of acceptance now allows me moments fragments of  peace and calm. Listening to Bach’s Piano Partitas today was my strawberry. How sweet it tasted.

On September 24, 2011 I posted “The Persistence of Memory.”  I begin this new blog with the first three paragraphs from the 2011 posting.

* * * * * * * * * *

Salvador Dali’s The Persistence of Memory has the eerie quality of a bad dream; it is a painting difficult to forget. The artist said that his purpose in completing the work was, “to systematize confusion and thus to help discredit completely the world of reality.”

                I have always found this painting disturbing. Its images are somewhat familiar, but they are oddly warped. The central
                reclining figure forms a grotesque profile of the painter himself. The clocks, I think, represent the distortion of time and
                memory. Ants swarm on the pocket watch in the foreground. A lifeless tree, a symbol of death, threatens. These images are
                not coherent — they don’t make sense.
I imagine that Alzheimer’s and dementia patients live in surreal landscapes. Perhaps they see images that are at once slightly familiar and confusing, irrational.One Saturday in August our son, Josh, came with me to the nursing home. Joan didn’t seem to recognize him. At these times she becomes quiet and a bit shy.Twice daily I take Joan for a walk, often out-of-doors. The day of Josh’s visit we three walked outside. After strolling for a while we sat in the sun on a wooden garden bench. We were shoulder-to-shoulder with Joan between us. Joan immediately turned toward Josh and rested her head on his chest. She took one of his hands and held it between both of her hands. Lumps in our throats, we sat in silence. Joan didn’t seem to recognize us, but the memory of past intimacy must have been strong. Her sure movement was a maternal gesture recalled from the past. We sat together for about twenty minutes. Joan’s tremors diminished; she was relaxed and seemed on the brink of sleep.

* * * * * * * * * *

This Christmas was pleasant for us. Josh drove down from Vermont in time for Joan’s lunch at The Hilltop. I began to help Joan with the celebratory meal and Josh joined us. We formed the three angles of a triangle. Joan seemed exceptionally tranquil and content. This occurs whenever we three are together.

Slowly she turned toward Josh, reached out, and caught his hand. We sat in silence for a few minutes. Joan was at peace. Her  graceful gesture, I am certain, manifested her awareness of who we were. This was a gift for the three of us of us. It was an affirmation that some unspoken memories persist like softly glowing ashes in the ashes of a fire. It was a Christmas gift and we were encouraged that even the ravages of dementia leave some wisps of memory, warmth, and affection.

It is few days later;  Joan and I are alone at dinner.   We follow our pleasant daily routine. We sit face to face, knees touching. My head is down over the dinner plate. I am cutting a slice of quiche into small geometric pieces. Joan sits forward in her wheelchair and leans close to my ear. Her voice is hoarse and throaty. “Something is wrong with me.”

A terse simple sentence. That’s all. And it nearly strikes me down because it implies her awareness of her condition. I am rendered disconsolate. My wife knows that something is “wrong.” She may remember vignettes of our past life, of our home, our grandchildren. She may even rue the loss of what we had and will never know again.

“She is leaving him, not all at once, which would be painful enough, but in a wrenching succession of separations. One moment she is here, and then she is gone again, and each journey takes her a little farther from his reach. He cannot follow her, and he wonders where she goes when she leaves.”

Debra Dean, The Madonnas of Leningrad

This Christmas was Joan’s third to be celebrated at The Hilltop. Everything about our lives has changed — everything. We are, nonetheless, closer than we’ve ever been. We are two lone trees on a mountaintop bent by unceasing wind. Many people care for us, and family and friends are supportive and kind. Our son is close by — only a a hour’s drive away. Other relatives and friends call often; they visit when they can. When it all comes down to daily life, however, we are alone as we face la forza del destino.

My perspective at the beginning of our journey was one of determination. I knew that I could do nothing to impede the deterioration caused by dementia, but I convinced myself that we could preserve at least a shard of our old life. I was wrong, our past life can only be a memory.

I now know that Joan will never fully know me again. I know, too, that she will never be relieved of the anguish she feels every moment of her waking hours. She will never know where or who she is. She will never fully recognize our son or our grandchildren. We can never expect surcease for her. Joan and I do what we can do; like Fitzgerald’s characters, “…we beat on like boats against the currents…”

Now, after years of looking for silver linings, I have found myself on the threshold of resignation. My twice-daily visits with Joan are tranquil. I now understand that my role is to provide her with comfort and calm stimulation. Each day we tour the the nursing home; I push the wheelchair and Joan inspects our world. She observes our surroundings like a mildly pleased potentate. When we get to the dining room we stop at each table and greet residents. Some of the residents hold out their hands to her and croon affectionately. Joan reciprocates with a slight gentle and sometimes bemused smile . We then tour the activity room where we stop at a full-length mirror and stare at our reflections for awhile. At these moments Joanie becomes even more deeply serene; perhaps our mirrored images engender a wisp of memory. We then have lunch or dinner by ourselves in a quiet parlor where both of us can focus on what we’re doing.

After eating I navigate the wheelchair to our room. I’ve purchased a small cozy sofa which we both enjoy. We sit quietly, and Joan rests her head on my shoulder.I use my ‘phone to play soft Gregorian chant. I read, Joanie falls asleep, and it seems like the old times. These are the most pleasant parts of my day. I stay until she is soundly sleeping and then I slip away.

Once home, I immediately rue our separation. NPR and the news provide momentary distraction. Nonetheless I routinely feel the guilt of a survivor. I survey our snug little house and think of Joan alone in her room. This is the way we will live our solitary lives.

William Somerset Maugham wrote that,”Resignation is the timid sign of courage.” We will never be heroic, but even timid courage is more honorable than despair.

My blogging diminished during the summer. I continue to see Joanie twice daily. I’m convinced that she recognizes me — not as her husband of nearly fifty years, but as one of her many caretakers. I’m part of the routine of her institutional life. I, too, have adjusted to the daily routine. I have acquired a light wheelchair; I have enjoyed taking Joan for a stroll all summer. She likes the sun. After our walk we have lunch or dinner, and we go to Joan’s room.

I’ve changed back to a  private room. It’s on the sunny side of the wing and has a private bathroom. I also found a cushy “chair and a half” which is small enough to fit both us and the space. When we’ve returned to our room after meals we sit on the new piece of furniture and Joan leans on my shoulder. I read aloud or sometimes I recount vignettes in our past — stories about Josh, our first little house in Westwood, our time on Nantucket, and our life in the City. The noise of the activity in the corridor enhances our solitude. The tremors cease and, inevitably, Joanie sleeps. These moments are precious to me. Joan is peaceful and I am happy to be with her.

I suppose that I now have a certain reluctant acceptance of our pathway; I feel now that I am doing all I can to bring Joanie a sense of safety, comfort, and love. Being with her each day affirms the good life we’ve had together:

Let fate do her worst, there are relics of joy,

Bright dreams of the past, which she cannot destroy;

Which come  in the night-time of sorrow and care,

And bring back the features that joy used to wear.

Long, long be my heart with such memories fill’d!

Like the vase, in which roses have once been distill’d–

You may break, you may shatter the vase, if you will,

But the scent of the roses will hang round it still.

Thomas More

A Line a Day

Nulla dies sine linea was written by an Greek artist named Apelles. It means “No day without a line.”  The axiom is a good rule for writers as well as for artists. I printed out this aspiration and posted it on the wall above my desk. I see it each day when I sit at my computer and it reminds me of my new resolve to narrate the changes in our lives in the last few years. I’ve been quiet during the summer for all sorts of reasons. Two are worth mentioning.

First, I sometimes feel that my writing has the tone of self-pity.  This disturbs me because I want to keep the focus on Joan. I want to dispell this self-oriented tone. It is Joan, not I, who is suffering and lost. My life is not all that I would like it to be, but life for Joan is a dark passageway of the unknown. Every moment of her life is is enveloped by confusion, fretfulness, and frustration. I am the not the victim in this drama. I have resolved that I will eschew the language of self-pity. Instead, I will attempt to describe the pressures caretakers will confront as they walk this path.

A second reason for slacking off this summer was my unfortunate tendency to break and run for cover. When I do this, when I don’t face the facts,  I become despondent and I begin to sink into the waters of despair. I can stay above water, however,  when I write. It helps me to be analytic about our situation. Writing allows me to confront the ineluctable facts of our situation. When I write I’m a better thinker and a I am stronger.

So, Apelles taught me that the rule of  “no day wtihout a line” — the systematic habit of not letting a day go by without writing — might be good advice for all of us who face the onslaught of Alzheimer’s/dementia. When we describe our experience we can express the pain of our loss and the fear we feel about the certainty of our our future.

In a past blog I cited a verse from Genesis Adam after God had created the animals. As the animals came out of the jungle he gave each a name. “The man gave names to all the cattle, and to the birds of the sky, and to every beast of the field…” I believe that this act gave Adam control of them. We, too, can name our beasts. Describing them helps us to define what we face; describing them makes us stronger because we can articulate our emotions and acknowledge the inevitable.

Fr. Paul Quinn, the pastor of our church, appeared early in this series of blogs — July 19, 1011 to be exact. He’s an exceptional leader who has reorganized the five Catholic churches of our city into a single unit. In doing so he walked through mine fields, managed public relations, demolished two buildings. Against all odds he succeeded in unifying the city’s Catholic population. He’s unpretentious, smart, and — of course — spiritual. His homilies are always written, always pithy, and always carefully crafted. Forgive the cliché — he makes the gospel meaningful in our daily lives.

Although he speaks with his notes on the lectern, Father Paul, doesn’t read his homilies word-for-word; his eyes glance down from time to time, but he faces the community with conviction and confidence.  Recently he spoke about the Gospel of Mark in which Christ sends out his apostles to preach:

“Jesus summoned the Twelve and began to send them out two by two…

He instructed them to take nothing for the journey but a walking stick —

no food, no sack…”

Father Paul concluded his sermons something like this:

“All of us have baggage — bulky suitcases full of guilt, huge bags swollen with regret, and  bulging sacks stuffed with hopelessness. We believe that we have place to leave these burdens when we set out for each day.”

I have used Father Paul’s  metaphor to leave my  sacks of sorrow in another’s hands each morning. This conscious effort helps me to articulate what weighs on my mind as I go through the day. I’m learning to renounce and diminish the inevitable disappointment, grief, and self-reproach I feel each day as I watch the one I love move further and further away.

This is no panacea. I don’t suggest that it will relieve caretakers of all fretfulness. But leaving our baggage  behind each morning is the only respite we can hope for. It allows us acknowledge that strength and willpower will never make things right, and it helps us to acknowledge our dependence on God, family, friends, and counselors.

The following letter was addressed to the director of the nursing home where my wife, Joan, resides. Of course, I’ve changed all names and specific data.

I include it in this blog as an admonition to caretakers. When we deal with an institution it is important to remind the professional leadership of their duty to the aspirations of the their mission.

DON  T  MAIOCCO • 18 BUTTERNUT LANE 

 NORTHAMPTON • MA • 01060

                                                                                                                                July 16, 2012

Mike Hagopian, Administrator

The Hilltop Nursing Home

444 Brook Street

Riverside, MA 01056

Dear Mr. Hagopian,

Welcome to The Hilltop. I was happy to learn of your strong background in nursing home management. I’ve also been impressed by your visibility – an essential aspect in the management of successful human organizations.

My wife, Joan, and I have been at The Hilltop since December 2010. I selected The Hilltop after a careful research and a lengthy interview with the director, the admissions officer, the unit manager, and a several other professionals. I made my decision to place my wife in The Hilltop for three reasons. First, I was told that two nurses and six aides cared for the East Wing patients during each shift. Second, I was assured that the Ethical Union Health System would begin the transition to a small-house model in the spring of 2011. Third, I learned that the East Wing treats only victims who suffer with cognitive issues.

Sadly, these promises have been unfulfilled. The number of aides in the East Wing is rarely six – last night (July 15) there were four aides – one in the solarium, one in the dining hall, and only two on the floor. The nurses were harried and overwhelmed. This shortage of staff is repeated each and every weekend.

The promise that The Hilltop would be reformed and become a small-house setting seems to be gone with the wind. The possibility of such an environment was important to me. Has the plan abandoned? Are there any plans to inform clients and their families the status of the project?

My third question is about the clientele of the East Wing. I was assured that the East Wing served the cognitively impaired. However, the unit also houses patients who often rave loudly. They intimidate other patients. I’m certain that you know that research indicates that loud and repetitive noise is positively related to increased agitation among Alzheimer’s/dementia patients.

On some evenings I leave The Hilltop trusting that my wife will be comfortable and cared for. Sometimes, however, I depart with shaken confidence in the ability of the overly stressed staff to cope successfully with the wide range of problems among the patients.

I believe that The Ethical Union and The Hilltop have broken their promises.  When can I meet with you to learn about your plans for the future?

Sincerely,

Don T. Maiocco

I’ve returned from a week a the beach. I had decided to take time away from home after many months urging. Our friends, our neighbors, my cardiologist, and many of my neighbors, all said the same words, “You have to think of yourself.” They were right, and I knew it. So, I called Joanie’s high school friend, Maryellen, who owns a pleasant condo in Seaside Heights, NJ. The house sits between a wide ocean beach and a tranquil western bay.

I’ve been away several times during last two-and-a-half years. I’ve been to New Jersey to join Joan’s family at occasions sad and joyous. I’ve also gone to NYC three-or-four times to participate in celebratory events at the school in which I worked. I’ve returned to NJ several times to see old friends. These sojourns have all been of short duration.

Each time I have returned from a brief trip Joan has welcomed me with little expression of recognition or joy. When I returned after 7 days absence I immediately drove to the nursing home. This time it was different.

The nurses and assistants I met on my way down the corridor of the East Wing welcomed me back. Several stopped to assure me that Joan missed me. Perhaps they thought that I would be flattered. I wasn’t. Instead, I felt as if I had been pummeled.

I found Joanie sitting on her favorite couch in the corridor. The moment her eyes caught mine she wept. For the next two hours she clung to me with the determination of a sinking swimmer; each time I shifted position she tightened her embrace.

When I left for the evening Jess, the unit manager, consoled me a bit. I shouldn’t, she said, be surprised that Joan demonstrated sorrow at my absence because she has “deep memories” which can’t be expunged by the disease.

John Locke wrote that, “Memory is the power to revive again in our minds those ideas which after imprinting have disappeared, or have been laid aside out of sight.” For Joan and for me our pathway would be less steep if memories could be laid aside.

I came home from the nursing home and called an old friend who had invited me to Cape Cod for a few days. Plans included a concert, a visit to a museum, and I looked forward to a hike in a favorite seaside preserve. I cancelled the trip for now. Both Joan and I need some time to lay memories aside.

Edna, one of my neighbors is a retired nurse practitioner from Wichita, Kansas where she served as an administrator in a cognitive unit of one hundred beds. She knows a great deal about the baneful ravages of Alzheimer’s. The other day Edna, asked me about Joan as we both sorted through the contents of our mailboxes at the Meeting House. I responded with my usual generalized update, “Many of her symptoms remain, but seem to more pronounced.When I finished, Edna asked the inevitable question, “Does she recognize you?”

A simple,”No,” would have done, but I always minimize this, the saddest aspect of my life, in a circuitous way. “She doesn’t really know me, but sometimes I think she recognizes me as a benevolent presence. I also believe that she is comforted by the regularity of our routines.” Edna didn’t push for any further details. Instead, she told me her story. Her father was a victim of Alzheimer’s. When he no longer recognized his family, she asked, “Do you think he knows me?” Her mother’s response was, “He knows you’re for him.” This sure assertion came back to me yesterday when Joanie fell as we returned from our daily mid-day walk.

Lately Joanie has been groggy at lunch time. She sleeps until 9:30 or 10:00 am each morning now and then has a hearty breakfast. When I arrive at lunch time she is often sleeping again. Indeed, she sleeps on-and-off throughout the day. I think that it may be nature’s provision of respite from the mental chaos caused the disease. Yesterday, as usual, I cajoled her into taking our daily walk on the grounds of The Hilltop. She complied, but was less steady on her feet that usual. She needed more support, and her steps were unsure and wobbly. I headed back to the main entrance. We made it into the vestibule where I stopped to rest for a moment. I steadied her with a hug. Very slowly, she began to sink; her eyes were wide with terror. I held her tightly and helped her to sit, then to lie on the grubby welcome mat. As she lay on the floor, I knelt beside her. She looked at me, and her terrified eyes became calm. I believe that she sensed that I would keep her safe and I would take care of things — she knew, I believe, that I was “for her.”

In a minute or s0, a three staff members appeared. We helped Joan up, supported her, and guided her to her bed. After she was settled and comfortable, the nurse in charge told me that research in the field indicates that spatial disorientation — especially in depth perception — is common among patients with severe Alzheimer’s/dementia. Joan perhaps thought the welcome mat on the floor was as high as a bed.

This vignette of Joan’s “slow motion” fall to the floor will stay with me; I will remember the terror in her eyes. I will also remember the relief I felt when Joan’s eyes caught mine and, albeit she didn’t know who I was,  she knew that I was for her. This fleeting moment was better than gold.