Our daughter is getting married! We are moving into a season of major changes in our family, and it is good. I get to be an instant grandma because her fiancé has an eight-year-old son. I made a treasure hunt for him when they visited us here in Ohio from Kansas, and I got a big hug for it!

As a family we have struggled through some challenging times with Lewy Body. I have heard it said that when one person in a family has a life-changing disease, the whole family has the disease. It is true that we all deal with the consequences. In some ways it seems like only now are we beginning to realize the impact that Lewy Body has had on each of us individually. There are challenges ahead, but for now I want to focus on getting to know the important people in our adult children’s lives.

Writing this blog for the past year and a half has been a rewarding experience. It has been a kind of therapy to try to put into words the experiences, feelings, and struggles that are generated by Lewy Body Disease and spousal caregiving. The very telling of my story has, at times, given me more clarity about the assault of grief that comes with loss. I’m thankful for the opportunity I was given to do this and thank you, the readers, who encouraged me with your responses.

Responses to the blog have played a role in keeping me writing each month. Unfortunately, when my computer-savvy son tried to help me do what I needed to do to respond to the responses, my server or computer wouldn’t cooperate. This eliminated the potential for meaningful dialogue that I would have sometimes liked to pursue. For that reason I have begun to include my e-mail address in the blog entries, and I am inviting direct communication.

I am especially interested in hearing from those who are spousal caregivers, those who have had LBD introduced into their lives in their fifties, or those who have been caring for a spouse for many years.

For the next couple of months I’ll be taking a vacation from writing the blog. During that time I welcome your direct e-mails. I‘ll reevaluate my interest in doing the blog after the wedding, and at that time may or may not begin writing the blog again.

I hope there will be changes in your lives over the next couple months that encourage, support, and uplift you.

Ginnie Horst Burkholder
ginnelb@juno.com

I keep trying to hang on to the goodness in life – keep trying to focus on the hope. Still, it seems I’m on a leash that will let me go only so far toward equanimity before I am jerked back to my reality and the grief of struggle.

When I can focus away from Lewy Body and its consequences on our lives, I get absorbed in the good I am able to create. In those times I can laugh at Lewy Body absurdities – the undershirt he is trying to pull on as shorts, the nonsensical word salads that come out of his mouth. I enjoy life in spite of the disease.

Then something happens. I am tired, task-oriented, or just want a relaxed relationship and comfort. Then suddenly I am back to a familiar and unwelcome place where the yoke of a Lewy Body marriage pulls me down into a cesspool of grieving.

I am in a partnership with someone who cannot pull his weight.  I arrange and manage life for two people. Lewy Body has taken away our equilibrium. He counts on me to organize and schedule our agenda for him, barely aware that if my ability goes away, we will surely both be in a heap of trouble.

Meanwhile I live my life in a sort of limbo, a no man’s land – neither a single person nor feeling the relational benefits of a marriage. Must I just be strong and live out all the pretty “shoulds” without contention?

I “should” be strong and committed to the relationship with my husband of forty years, and that relationship “should” sustain me. I require myself to surrender to my commitment, but how long can I swallow my loneliness?

I “should” be able to focus on the good in my life. When I am focused on friendships, family support, and new experiences, I am energized. Then, in my joy and enthusiasm, I turn around to share it, but the excitement falls on barely comprehending ears and elicits muddy Lewy Body questions with long pauses that drain away my desire to engage. Then I am jerked back to struggling against the losses.

I “should” shift my focus to people and places other than myself and my circumstances. So I push my comfort zone and surrender to going places that will give me new experiences. There I meet new people and am teased with new relationships that look more satisfying than the one I am committed to at home. Then I am brought again full force into grief.

For thirteen years we have been a partnership: Nelson, Lewy Body and me. It has been a struggle that seems to require frequently revisiting a realization described by Joan D. Chittister in “Scarred by Struggle, Transformed by Hope.”

“There is no one, I come to realize with a kind of empty shock, on whom I can depend to do my bidding this time. Despite the network of people I have carefully constructed over the years, there is no one with connections enough to pull this final string for me. There is no one on earth, no matter how well-disposed they may be to me, who can make the inevitable go away. It is like losing at the Supreme Court of life.”

I may lose at the Supreme Court of Life, but I will not lose even more by abandoning the potential for greater acceptance and hope.

Yesterday, February 14, Nelson sang a valentine song to me that he learned in kindergarten. “Valentine, Valentine, tell me what you say. I love you, I love you, more and more each day.”

I just couldn’t resist saying, “So you saved it all these years to sing it to me standing naked in the bathroom door.” We shared a laugh and a hug.

© 2008 Ginnie Horst Burkholder

ginnelb@juno.com

Someone asked me if I had made any New Year’s resolutions. I laughed, surprised that it hadn’t even occurred to me. Maybe, I thought, it is because it is all I can do to stay focused on my intentions.

I intend to live caring for myself. When my life requires more of me than I feel I have to give — in those moments when Lewy Body Disease flaunts banners at me that shout, “You are not enough!” — then I will give to myself until I have enough. When I lose me, I am lost to everyone. So I will put the oxygen mask on me first; I will understand the tear in my eye first; I will turn the light on in my soul first; and I will find a place to rest my weariness. I will ask me how I’m doing; I will look for a place to renew; and I will listen to my own heart first. I will ask, seek, and knock until I am filled to more than “enough.”  I will give from the overflow. That is my intent.

I intend to live loving my children.  I think of my children carving their way in a world that is changing so fast and has so many pitfalls it takes my breath away. I know they too will need to have enough. I want to package “enough” and give it to them, but that’s not the way it works. So, I want to work more at listening, mirroring, questioning, and reminding them that no matter what, they are loved.

I intend to live committed to Nelson. Even though he has morphed into a different person in a tedious LBD decline, I want to be worthy of his trust. It sounds noble and it is, I suppose. But my intentions get easily lost in daily tests of tenacity.

I intend to live believing in God. I intend to let my searching soul pick up the pieces of my life and hold them before God for inspection. I intend to let the quivering voice of doubt be enough when that’s all I can muster. When the question, “Why have you forsaken me?” presses, I intend to speak before the darkness swallows the truth that I am not alone. I intend to be unapologetic and joyful when faith carries me.

I intend to live in a community of friends and family where my life intentions get tumbled, tested, and worn smoother under the scrutiny of others.  I intend to live compassionately in a world community and gently on a stressed planet.

These are the intentions that define my life.  Often I lose sight of them, ignore them, fight with them; and then I come back to them to build on, fortify, refine, and redefine their application.  If in the murky fog of the coming year I can live more consistently by my intentions, the year will be a prosperous one.

© 2008 Ginnie Horst Burkholder (ginnelb@juno.com)

My Christmas list is short. Things, it seems, are what I have too much of. I can’t keep track of all mine, all his, and all ours. I am trying, not very successfully, to pare down the number of things that need organizing, dusting, fixing, storing, filing, displaying, accounting for, or maintaining. So, beyond my short list of things, my Christmas list is this:

I would like to have patience for all the times I need to stop what I am doing to focus on listening to and deciphering the vanishing voice of my husband.  I need patience for finding the lost things:  my glasses that show up on his face, his wallet that surfaces in his underwear drawer, his glasses that lived for weeks with his boots in the garage. Just wrap up patience and give it to me, please, with a bow that promises tranquility on those days when I seem to run out of the inner resources that being a caregiver requires.

I would like before-breakfast endurance.  When I want only to put my feet to the morning floor and stretch toward the day, but need to bolt into attentiveness and vigilance to avoid messes, misses, and moroseness.  Then I need endurance. When I get up in the morning and want to remember my dreams, but instead am instantly needed for untangling his day, that’s when I need endurance.

I would like to live with hope again instead of this gnawing knowing that nothing I do is going to bring back my husband’s vitality, and nothing is going to stop this slow shuffle of loss.

I fantasize that ABC would do a show called “Extreme Care for the Caregiver.”  I see a crew of resources coming to the doors of caregivers and announcing, “help is on the way!” We caregivers are tired though, and most of us are old enough that we wouldn’t be able to jump up and down and scream our delight for the cameras. We could faint though.

Since no one can grant me the wishes on my list, and ABC is not at my door, I will ask for hugs. Nelson’s hugs are diluted by dementia and need, and his strong arms are weakened by disease. I miss those attentive hugs. Just give me hugs for Christmas, strong reassuring hugs that tell me someone close to me cares.

©  2007 Ginnie Horst Burkholder

We went for a hayride in an autumn wood where yellow-gold leaves shimmered on beech trees in early evening sunlight. When it was over and time for Nelson to stand on unsteady legs in the middle of the hay wagon, the people around him gave patient hands and long minutes to the process. As we stepped down into scattering leaves, our friends’ easy acceptance and offers of help settled upon me like a blessing.  For this, I am thankful.

We have a son and a daughter who are both living in other states. Acceptance of Lewy body has been hard for all of us, and we have not always had the coping skills or the energy to support good connection among us through the years of this disease. The miles apart, and our family system, often left us to flounder individually in the processing of the emotions that are the passage to acceptance. We are evolving into better communicators, and at the end of phone conversations there are now three words we can count on exchanging: “I love you.”  For the precious gifts of growth, individually and in relationships, I am truly thankful.

Years ago, before Lewy body was even in our vocabulary, my younger sister, who lives out of state, began working in the field of dementia, providing leadership for coordination of education and services on a state level. Now, every third weekend she brings her expertise along with her husband, and they give us a hand with home repair or lawn care. More importantly they give respite not just from the caregiving but from the loss of reciprocity of relationship that a spousal caregiver feels so profoundly. Having that to count on keeps me balanced, keeps me from falling off the edge of sanity, and keeps me believing that even now after twelve years, I can still keep on. For this, I am thankful.

Nelson’s temperament is such that he will laugh at his own confusion.   When his tongue refuses to make words come out in any sensible pattern, he seems to find it entertaining.  When I make a feeble joke at my own impatience, he will laugh spiritedly. When there is no explaining some behavior that I have called to his attention, at best he is likely to get a sheepish grin and look at me with puzzlement.  At worst he ignores me.  He does not display the combativeness or aggression that plagues some caregivers. I know that for this, I can be very thankful.

There have been times in the last twelve years of Lewy body where I simply could not dig deep enough to find any faith that God was with us in this disease. At times I still struggle with feelings of betrayal. Yet many times I have also had glimpses of my own growth so that I have to believe that God carries me. Other times, at just the right moment, I have had a neighbor knock on the door or received a phone call, or experienced a sequence of events that seem to carry my best interests at their center. More often, in the rough spots when I cannot believe that the river that is God’s goodness is at work for me, I find myself relaxing into the river and letting it move me along, instead of kicking and screaming against it. More often I know I am in the river of God’s good intent, and for this I am thankful.

© 2007 Ginnie Horst Burkholder

I went into labor on Halloween night 1971. While we awaited the birth of our first child, Chuck and I joked that the baby might be born a tiny hobgoblin or witch. But Teddy was born at 12:26 p.m. on November 1 — All Saints’ Day in the Christian calendar. Many years later when Ted participated in a college Irish Studies program, he discovered another ancient ritual that was celebrated on November 1: the Irish New Year, known as Samhain (SOW-en).
On November 1, 2003, Chuck and Ted and I decided to celebrate Samhain and Ted’s birthday at our home. Four months earlier Chuck had suffered a severe stroke, and only a few weeks before, he had been diagnosed with Lewy body dementia. The twin tentacles of those illnesses had thrown us all into a state of confusion and sorrow. We hoped the celebration would help us begin a journey, if not of healing, then of understanding and acceptance. Given Chuck’s Irish roots, Samhain seemed an appropriate ritual to observe.
Ted’s girlfriend, our oldest son Charles (from Chuck’s first marriage) and his wife joined us. It was perfect Samhain weather – raw wind, gray sky, and the promise of rain. We brought Chuck home from the nursing facility where he had resided since July.
In accordance with preparations for Samhain, during the past few days some of us had given or thrown away unnecessary or broken possessions, paid debts, cleaned house, and (in a modern twist to an ancient ritual) trashed unneeded computer files and backed up others. Samhain is a time of letting go and clearing out. Then on November 1, our family observed some of the principal activities of Samhain, as the Irish have done for centuries.
Create a harvest feast.
In the kitchen, Chuck sits in his wheelchair and watches Ted create a thick tomato-based broth flavored with basil and freshly-squeezed orange juice. The windows fog up as the soup simmers on the stove. I put a round loaf of Aran donn (Irish bread made of flour, oatmeal, and buttermilk) into the oven. Ted makes “fairy cake” batter and pours it into muffin tins, while I chop apples and celery and walnuts for an autumn salad.
Put your garden to bed for the winter; plant spring bulbs.
While the food is cooking, some of us go out to the front flower beds to dig holes for bulbs. We battle stubborn juniper roots for rights to the soil. The earth flies apart in chunks, yielding to the thrusts of our shovels. Our hands are chilled by the wind. Chuck watches for a few minutes, then asks to be wheeled back inside so he can sit and sleep by the fire next to Charles. We cover the bulbs with dirt and rake Japanese maple leaves over the beds.
Light new candles.
Last night we burned our old candles, blew them out, and threw them away. Tonight there are new gold-colored candles on our table. We light them and eat our Samhain meal together, acknowledging our debt to the earth for our food. We speak of those who have gone before us – my mother, my sister, my grandmother, and Chuck’s mother — all of whom died around this time. We say to each other, “I love you.”

Let go of the past and say hello to a new chapter of your life.
Today is the beginning of the Irish New Year. The past is gone, not to be revisited. The future, no matter how daunting it seems, lies ahead and must be approached with a child’s innocent bewilderment, asking: What do I need to learn in this new chapter of my life? What do I have to offer? What do I fear? Why do I fear it? How can I go forward with strength and courage? How can I love myself and others more completely?

I am overwhelmed by these questions, but quietly confident that if I am patient and live from moment to moment, answers will come.
The bulbs we have planted today will lie dormant throughout winter. Next spring their growth will push aside the black earth, and yellow, purple, orange, and white blossoms will emerge into the warm light.
Chuck is tired and ready to return to his small room at the facility, which is a few miles from our home. We are on solo journeys now, he and I. We interact daily, but nothing is the same.
Chuck used to teach Shakespeare’s “Julius Caesar” to high school students in Chicago. He would challenge them to cite three consecutive words from the play, and then he would identify the act and scene from which the words came, the character who spoke them, and to whom. A few weeks ago when we were filling out our absentee ballots, he began to weep because he could not remember his last name.
We have much to learn from this time.
Samhain is about potential. With courage and reflection we can change. Samhain suggests that our lives are not so much about progressing forward, but about passing through cycles.
It is 5:00 p.m., and the sun has already set on this bleak November 1, the first day in the Irish New Year. It is Samhain. Today we are instructed, “Go inward, into your proper darkness, and be a witness to your own growth.”

With gratitude to Sean Williams

©Florence H. Munat

Nelson is gone, visiting his family in Michigan. Do I miss him? Yes. Do I enjoy the freedom and change? Yes. Lewy body tugs me in two directions at once.

Several years ago I went to an auto supply store and asked if I could buy the kind of paper mats that mechanics leave in your car. They sold me a pack of two hundred, and I began using them in place of rugs on the bathroom floors. They make accidents easy to spot, working as blotters that make cleanup easier. Since they are disposable I am not constantly washing rugs.

The mats are also ugly and cold, and so soon after Nelson left for Michigan I threw out the ones that had been down and put rugs in their place. For four mornings I walked into the bathroom to the wonderful sensation of warmth and comfort on my feet.  For as many days and evenings, I felt I was walking into luxury each time I went into a bathroom.

For an hour and a half, a married couple and I went hiking through hickory and beech trees that were beginning to drop their fall foliage.  It was exhilarating to walk without having to deal with energy limitations imposed by Lewy body. It was liberating to converse without repetition, careful enunciation, and explanations addressing Lewy body confusion. Still, I was one, alone with a busy married couple. “You sure you don’t need this time just for you?” I had asked. They assured me it was okay. I chose to believe them.

On the hike we came upon “chicken of the woods” — a fungal growth on trees. It was a real find to these naturalist friends, she an enthusiastic high school biology teacher.  Nelson would have loved the brightly colored orange tops and yellow undersides of the petal-shaped brackets that run like shelves up opposite sides of the tree. He would have tasted this novelty with us later, and if he liked it would have probably eaten more than his share. If he didn’t like it, when offered more he would have said, “Maybe tomorrow.”

I sat at the counter in their kitchen and watched as our friends blended their movements and enthusiasm at the stove. “Try this… let’s get… okay, I have… where is the…” Their synchronized movements were a testimony to their years of marriage and, I couldn’t help thinking, their healthy minds. The contrast to my own life floated across my awareness. Their shared excitement was the picture of companionship. I tasted the “chicken” and it was deliciously moist and flavorful and yes, tasted like chicken. Nelson, the science teacher who once ate chocolate-covered ants with his students, would have loved the whole experience. But Nelson of Lewy body would have been tired by this time and ready for home.

Later that day I stood in line at calling hours for a friend’s father. I was sandwiched in line with strangers in front and behind.  Now I wanted Nelson at my side. I wanted the comfort of the familiar. I wanted someone to hold on to.  Mutual friends, two couples, had already been through the line and spoke together in a small companionable group that accentuated my aloneness.  This is what it is like to be single, I thought.  I did not like it.

Now he is at home. The paper mats are back on the floor. His muted voice and lack of words crush my interest in communication. Still we went for a walk, and I had his company. He tumbled to the ground and rolled like a teddy bear, then jumped up laughing.

I am in the middle of an emotional tug of war, alone and single-like one minute, together, married with difficult and broken connections the next. It is the life of spousal caregiving and Lewy body. There is nothing to be done but to review my commitment, acknowledge whichever end of the emotional tug of war I need to process now, and pray that I can get on with caregiving.

© Ginnie Horst Burkholder

This morning I am feeling the weather. Or is it reality that floods over me and wants to pull me under?

Last night, Nelson was, for the first time in weeks (or was it months?), awake all evening and attentive when I spoke. He even fed himself.

It precipitates a subtle change in me. I enjoy an audience for my thoughts. I speak of all the different things I have learned from the four heating contractors I have interviewed. He almost seems to be taking it in. He is here. I am not talking to space.

I give him his shower. When he is in bed he invites me to join him. He wants to talk.

He tells me that Trudy, the social worker, talked with him and Tina about what is appropriate for their relationship. He smiled and said, “Tina kept saying, ‘Are we in trouble? Are we in trouble?’”

I see the fondness for her on his face. I am relieved that the conversation went well. I say, “And you can still be friends.”

He says, “Yes.”

It seems a nice resolution to a relationship that was serving a need but worrying his sense of what is right.

I lie beside his shakiness and feel the familiar dichotomy of my life. It pulls me in opposite directions. I am relieved and happy for him. I am confounded for us as we try to meet our relationship needs.

I have a little more of him tonight than last night and am thankful and uplifted. But I have had so little of him lately, and experience has taught me that this will be short-lived. Knowing that, it is difficult to celebrate the moment.

How do I cherish the person he was without longing for that person? How do I cherish the person he is without getting mired down in the utter insensibility of this disease?

This morning he is confounded by every need. I cannot understand his words. He cannot follow my directions. We move ahead until he is dressed and ready for his ride to daycare. He seems to want to be on the move, but I cannot understand his purpose. He can’t verbalize his intentions.

I invite him to the garden. I want to show him the unseasonable blooms of an amaryllis. He totters. His unsteadiness is unusual, and I search out a cane. We make our way to the garden. He shows no sign of surprise or wonder, no consternation, and no registered response to what would have at one time lit up his face. I suggest that we return to the house, and he mutters an agreeable sound, but starts off in the opposite direction. I steer him back. When the daycare bus arrives, he asks what it is doing here. I tell him, “This is Monday. You go to SARAH today.” I can only wonder what trick his mind has played on him this time.

The day sprinkles further discord into my thoughts when a neighbor man showers me with compliments and presses to take me to lunch. I decline and later observe my vulnerability to the longing that is stirred for companionship. I am pulled apart by longing and commitment.

I want to slay the dissonance dragon that breathes its stinging breath into our relationship. Instead I keep housing it and wondering what it will do to us next.

© 2007 Ginnie Horst Burkholder

When I give Nelson a haircut or wash his hair in the shower, he cannot keep his head upright.  So I am constantly pushing against his forehead to move him into an erect position. Looking at him with his head erect, his back straight, I have flashbacks of the old Nelson. I have been looking at the top of his head for so long that I had forgotten what he once looked like and how handsome he was.

I am trying to consolidate and organize photo albums that have accumulated over the years. There are so many memories.

The first picture I ever had of Nelson was a school picture he gave me. I took it with me to camp where I was a counselor, and the girls in my cabin giggled and squealed over his good looks. My heart beat a little faster each time I looked at it.

I was so full of knowing then. I knew that when we were together everything would be okay. I knew that life could not be better once the miles between Ohio and Michigan no longer separated us. I knew that his chiseled features, easy presence, good humor, and mop of curly hair were tugging at my heart.

I look at the picture now, and the same heart-stirring fondness comes roaring over me with the strength of a locomotive. Only now the engine carries with it carload after carload of loss. The once-articulate storyteller cannot put forth his words.  The entertainer now looks to me for a script. The adventurer is on a Lewy body leash. The risk-taker must have a caregiver who is not. The intelligent and adept teacher cannot access information. The cuddler is rigid. Loss tags on to everything.

Looking forward with hope and promise is necessarily a right of the young. Perhaps wading in loss is the passport to maturity and wisdom. Dr. Keith Ablow says, “The longer we try to get distance from the pain the further down the road to nowhere we get.” So I will visit past memories as I can and wade through present loss as I must. It is the path of a caregiver who wants to avoid going nowhere.

© Ginnie Horst Burkholder

Living constantly with loss, coupled with the ever-increasing responsibility of caregiving, pulls me off balance and gives me the feeling of being in limbo.

On June 28, I journaled, “I miss him, but he is here. I am homesick, but I am at home.”

A few days later I wrote, “I want to be coddled, but I am the coddler. I want to be catered to, but I am the caterer. I want to be with someone, but I already am. And he is not here.”

Somewhere during this time our son Eric called from his home six hours away and said he was coming for a few days, and that I should make a list of things to do. Then he said that Kay was coming too. So far we had only heard about his girlfriend Kay. Now we were about to meet her. “Oh yes,” he said. “She wants to take over the kitchen. Are there any special diet requirements?”

Cooking is not my favorite thing to do, so I was happy to give her the kitchen. “Tell her I will clean up if she does the cooking.”  I cleaned out the refrigerator, scrubbed up the stove in anticipation, and hoped the kitchen was adequate.

They arrived, and in no time we felt Kay belonged. She not only went for the groceries, she also cooked three meals a day. For four days we did not see a box of dry cereal. After meals, when I would step up to the sink to begin clean up, she would send me away. When there was a spare hour between meal preparations, she searched me out and wanted to help. I was trimming our 195-foot hedge. I have done it so often it is like a bad habit. I don’t like doing it, but I do it easily. She offered to take over. Nothing would dissuade her. I handed over the trimmers and walked away to freedom from the hot sun and found the porch swing.  Now this was definitely coddling.

In the meantime Eric did repairs; scraped, primed, and painted the railings and banisters of two porches; and then in a surprise move — it wasn’t even on our list — cleaned the workbench in the garage. It seemed I was being catered to by a superman who bore a strong resemblance to the Nelson I once knew.

In the evenings we would sit on the grass or porch and play with the kitten they call “Oscar” or “Baby” or “Fuzzball.”  Kay would try to get Oscar to sit in Nelson’s lap or show her concern for “Eric’s dad” in other small ways. We would laugh together at kitty antics and pass the time in easy conversation and good company. The homesickness was gone.

I might have suspected someone was eavesdropping or reading my journal. But I know that didn’t happen. Or then again, maybe it did.   Someone did read my journal:  Someone who prompts the very best in people, Someone who answers prayers.

© 2007 Ginnie Horst Burkholder