A Positive Approach

I awoke early this morning, long before the first blush of dawn and I lay in my bed thinking of the countless challenges that Nan and I faced together. Some were small. Some were monumental. Each struggle was an attempt to navigate the great rushing river of dementia. Together in our tiny boat called Hope we have traversed jagged rocks and whitewater so powerful that we were often rudderless, all the while holding firm in our belief that eventually we would come to rest among the calm reeds on the far bank. And this is where we are this morning, moored in a quiet spot where the waters are still and giant grasses quell the nearby torrents of worry and fear. Optimism and courage dwell along these shores, inspiring the wisdom and peace necessary to continue our journey. And here we sit, waiting to be pushed on by the soft winds of time hoping that the stormy gales of unhappiness lay far behind us.

The peace that I felt this morning is not that of a victorious conqueror. By now, I know all too well that dementia is a shifty opponent. I know that I cannot control every aspect of Nan’s life and that I am only experiencing a temporary lull in her symptoms. I know that new problems will arise soon. I know that her disease might stabilize or it might worsen. I know that someday critical physical ailments will overtake her body. I know that there is a possibility that at some point in the future she may become completely blank and unable to communicate with any of us. And yet for now at least, I am calm and at peace.

There is an old saying that I have learned to live by, “Just control the controllables.” I realized a long time ago that I cannot change what will eventually happen to Nan, even though God knows I have tried. In vain, I have attempted alter the course of her future. But I am always led back to my mission statement and the realization that I can only create moments of joy within the confines of her ever-shrinking world. No heroic act or incredible epiphany will propel Nan back in time to who she once was. At the end of the day, as in most life experiences, all I can control is my attitude. My frame of mind is my choice. Whether I decide to be positive or negative is for me to decide.
I am the filter through which Nan sees the world. My actions and attitudes reflect back to her how she should interpret everything in her life. If I strive to be kind, she will know that she is loved. If I appear strong and in control, she will know she is safe. If I choose to be positive, I will show her there is hope. We are two halves of a circle that begin and end with me.

Admittedly, at first it was difficult to maintain a positive outlook. I worked hard to remain positive whilst enduring her countless unstable behaviors. Sometimes dementia was the victor and a kind of helpless depression overtook me. These were hard days when I would brim with resentful anger when all I could do was walk away and begin again the next day. No matter how hard you try, no positive approach leads you in a straight line. Instead, it ebbs and flows as the circumstances of dementia change. It is during these difficult times that you must take a breath and value all of your achievements up until this point. Don’t compare your loved one’s behaviors against how they behaved yesterday, or how you hope that they will conduct themselves tomorrow. Instead, try to remain calm and give yourself credit for all the positive changes that you have been able to achieve. This situation is never solved and its future is never certain.
Typically when I have found when I am feeling especially low, it is because I have been focusing on the ravages of the disease and not on what I am able to do in order to counterbalance its hold on Nan. Once again, I am not controlling the controllables. I’ve temporarily diverted my attention away from my goal and am viewing her actions in the context of who she used to be. I forget that nothing is this life is permanent. I forget that we don’t have to understand everything that is happening to us in order to find happiness. During these times I mentally grab ahold of myself, and deliberately change the thoughts that are running through my head. Sometimes I redirect my thoughts saying affirming statements out loud. Sometimes a good night’s sleep does the trick. It is almost impossible to create positive thoughts when you are feeling emotionally and physically exhausted.

By deciding to remain positive, over time it has become a habit. For even with a diagnosis as horrific as dementia there are truths worth celebrating. And once I decided to open my eyes to all that remains, I began to see a multitude of tiny miracles swirling around Nan. I have witnessed more spontaneous demonstrations of kindness, understanding and spirit-filled behavior than I can count. Had I not been paying attention they may have passed by unnoticed. But they were there all along, hiding behind the distractions of my daily life, just waiting to be detected and appreciated. Even in the advanced stages of her disease, there is so much about Nan’s life to celebrate.

Nan still has the capacity to experience love and happiness.
Nan can still laugh and enjoy being with her family.
I still time have left to be with Nan.
Nan’s new reality, although limited, can still holds many wonders.
I have an opportunity to love Nan in the way that she has always loved me.
I know that Nan strives hard each day to remain engaged with the world around her.
Nan is loved by everyone she encounters.
By helping Nan I have become a better person.
Nan still has the capacity to enjoy life’s simple pleasures, like soft breezes and sunshine on                 her face.
Nan inspires the best of human behavior in the people that she meets.

There is a greater purpose for her survival. Her life has meaning and importance.
Wow. If you stop and think about it, these truths are pretty remarkable. In fact, they are awe inspiring. When I read down this list I find it difficult to be negative. So I tuck it in the back of mind so that I can draw upon it when I feel my positive attitude beginning to waver.

Even in Winter Nature’s Beauty is Found

A day doesn’t have to be sunny and warm to be filled with delight and surprise. Even in the dead of winter, when drifts of snow cover the ground, my mother-in-law, Nan and I would still enjoy the beauty of nature. Since we couldn’t go outdoors, we would sit at the window and admire the bare trees whose branches were covered with snow and dripping icicles. We watched birds that visited the feeders outside our window and watched sunshine reflecting off the icy top of snow banks. We spoke of winter things and how lucky we were to inside where it was warm and cozy.

Don’t forget to share the beauty of nature with your loved one even when it is cold outside. Why not spend the winter months dreaming of the promise of spring by forcing flowers into bloom? I find that amaryllis and narcissus work the best. Place the bulbs shoulder to shoulder in shallow bowls and cover them with small stones. Next, add water and before long you will have a lovely display. Sometimes of the blooms become top heavy, use a ribbon to tie them to branches that you find in your yard. When they are done blooming, I plant them in my garden beds. Tulips and hyacinths can also be forced to flower, but first have to be tricked into thinking that they have experienced an entire winter season. I do this by placing them in my garage refrigerator for about two months.

In the late winter months, my mailbox is inundated with glossy seed catalogs. Nothing cures the winter blues better than leafing through pages filled with heirloom vegetables and annual flowers. Together Nan and I would sit and choose our favorite flowers and plan where we would plant them in just a few short months. Then three weeks before the final frost we begin our garden in in small pots that I make from newspaper that we placed on her windowsill. Winter is a time for enjoying nature’s quiet beauty as it slumbers and to look toward the spring that is just around the corner. Why not share this with your loved one?

Nature

I find it hard to imagine a life without access to the magnificence of nature. In today’s technological world, it is easy to forget that we are part of her extended family, a distant cousin to all of her creations. We forget that we are living beings who require sunshine and fresh air in order to thrive. We forget that we are part of the continuum that gazes down upon us in the night sky. We forget that we too are stardust.

For many years the scientific community has recognized the potential restorative power that nature can have in our lives. Evidence exists that our brain waves actually change when we are surrounded by vegetation and nature. Over thirty years ago scientist Roger S. Ulrich became the first scientist to utilize an electroencephalograph (EEG) to monitor the brain wave activity in adults as they viewed photos of nature and then photos of urban cityscapes. Results indicated that when we view lush scenes of nature, we have higher alpha wave activity in our brains, which results in a relaxed state of being and lower anxiety levels. It is important to keep in mind that participants in these studies were only looking at photos. Just imagine the calming effects that transpire when we are physically present and witnessing nature firsthand.

This news is was not too surprising, since mankind has recognized this truth for thousands of years. Since the earliest days in Chine, Persia, and Greece, we have understood that contact with nature reduces stress and promotes well-being. I think that most of us know this instinctively. So why do our modern healthcare institutions neglect this ancient understanding when constructing facilities? Why is our fundamental need to commune with nature not considered when creating care plans for the sick, elderly, and cognitively impaired? I may not know the answers to these questions, but I do know that we cannot rely on facilities or institutions to connect our loved ones to the healing power of nature.

Physical and spiritual renewal cannot occur when we are closed up in a building with little natural light or fresh air. No, we need opportunities to feel the softness of grass under our feet or to touch the smooth bark of a crepe myrtle. I pity the person who never feels the soft warmth of sunshine on their face or smells the bright green fragrance of spring. No amount of environmental air filters or aerosol sprays can replace the smell of trees swaying in the wind on a soft summer’s afternoon.

As I have told you before, in my early days as a caregiver my main focus was that Nan’s daily physical needs were being met and that her environment was safe and secure. I am certain that today most of your energy is being spent in the same way. However, as time went on and I came to know other patients and observe their behavior, I soon realized that these issues are just baseline concerns. Yes, they are paramount to the life of the patient, but they are just the beginning, the foundation which enables them to experience the fullness of life. I came to realize that Nan needed more than just food, water, sleep and help with rudimentary hygiene. She needed to engage with elements that would make her life rich and meaningful.

No life is one dimensional. In order to be fulfilled and find happiness each of us must have a multitude of experiences that reinforce our well-being. We must feel alive and a part of the world around us. We must experience simple joys like crisp autumn days spent under bright blue skies. Nature has the power to infuse our lives with the innate sense of peace. And this does not change as we grow older or become impaired. Just because they have limitations does not mean that the positive influence of nature cannot bring incredible happiness into the lives of our loved ones. Nature can elevate them from a state of merely existing into the soaring heights of feeling completely alive.

 

London Book Festival

 

I am pleased to announce that my book,

Creating Joy & Meaning for the Dementia Patient,

received an Honorable Mention at the 2015 London Book Festival!

I’d love to meet you in Charlottesville!

I will be participating in the Virginia Festival of the Book in Charlottesville, VA,            March 16 – 20, 2016.

I will be participating in the “Caring for the Caregivers” panel on March 16th at 4 pm at the JMRL Central Library in Charlottesville.

I will also be signing books and meeting the public at the Book Fair, Saturday, March 19th, from 9am to 4pm in the atrium of the Charlottesville Omni Hotel.

What is a memory?

There is an interesting memory phenomenon that I witnessed not only in Nan, but also in other dementia patients.  Over time I began to see a correlation between how often I came to see Nan and her tendency to act out in a negative manner.  The more often I came, the less likely she was to be anxious and distressed.  It took some time for me to notice the pattern and to link these two events together. This is especially interesting since more often than not, she completely forgets my visit before I reach my care in the parking lot.  So I am not saying that she remembers the actual details of our time together, but on some deeper level she seems to understand that someone loves and cares for her. It is as if a part of her knows that I have been to see her and this deeper connection seems to sustain her while I am away.

Research shows that Nan is not along in this phenomenon.  Experts have witnessed this also. According to research “endorphins released during a pleasant experience have a salutary effect on the person with dementia even after the experience is forgotten.” (Rebecca Mead, “The Sense of an Ending,” The New Yorker, 2013.)

After watching Nan for many years, I know with certainty that her understanding of the world around her is far greater than she is able to consciously recall or verbally communicate.  It is as if her memory has been divided into two sections. The side of her mind that rationalizes and problem solves is devoured by the ravages of the disease. it is worldly and temporal,, directly affecting her ability to reason and problem solve. But then there is another side that relates to feelings of her heart. Although affected, it still seems able to respond to and retain loving experiences. For example, the more often I visit, the less likely she is to have aggressive emotional outbursts. She tends to be calmer, less agitated, and more cooperative. I don’t know if it is conscious or intuitive, but I am absolutely certain that she know on some level when I have been to see her and when I have not.

I am a realist. I know that Nan no longer can recount the details of our conversations or what time I said I’d return. But all the same, I know that my daily visits are not in vain.  For when I have  been absent for just one day, she clearly makes her feelings known. You would be amazed to seen how a woman, who rarely speaks and on most days does not know her last name, will become angry with me because I was not at lunch on the previous day.

If you think that this is completely farfetched, observe your loved one after you have been absent for a day or two. Although they may not be aggressively punitive, I bet that if you pay attention you will see a change in their attitude toward you. Be thankful and take this as a sign of hope. After all, it proves what you and I have known all along – that they are still in there.

I truly believe that the spirit of every interaction, every smile, every loving comment, and every joy-filled instant, stays with Nan deep inside her spirit. Consequently, I do not discount any positive interaction that she and I have. I believe in the encouraging impact of regular loving contact.

Unfortunately, as I stated earlier, most of your progress will not be obvious. Most of the time, it will be invisible. For you see, you can never know what is remembered deep within your loved one’s heart. Just because you cannot guarantee that they will remember that they are loved, love them anyway. For, if you count your successes by visible affirmations you will surely be disappointed.

No, your rewards will be paid to you in the best currency of all, in the knowledge that you and your loved one have experienced tiny pleasures that otherwise may have gone unnoticed. Sometimes these pleasures will seem to small that you wonder if they were worth your bother. Oh, but they were. Begin collecting them today. Pick them up joy-by-joy, pebble-by-pebble, until there are no stones of happiness left on the beach to be wasted and washed back into the sea.

Virginia Festival of the Book

I am pleased to announce that I have been invited to participate in the

Virginia Festival of the Book which will take place

March 16 through 20 at various venues in Charlottesville, VA.

I will be meeting the public and signing copies of my book Creating Joy & Meaning for the Dementia Patient, Saturday, March 19th, from 9am to 4pm at the Book Fair held in the atrium of the Charlottesville Omni Hotel.

I will also be participating in a panel discussion during the course of the festival. I will announce the date, time, and place in the upcoming weeks.

There Are Always Reasons To Be Grateful

There is an old saying that I have learned to live by. “Just control the controllables.” I realize that I cannot change the inevitability of my mother-in-law’s decline through the stages of dementia. Despite my innumerable efforts, I always return to the realization that I can only control small moments within the confines of her ever-shrinking world. No heroic act or incredible epiphany will propel Nan back in time to who she once was. At the end of the day, as with most life experiences, all I can control is my attitude.

I am the filter through which Nan sees the world. My moods and behaviors influence how she interprets everything in her life. If I strive to be kind, she will know that she is loved. If I appear strong and in control, she will know she is safe. If I choose to be positive, I will show her there is hope.

Admittedly, at first it was difficult to maintain a positive outlook. I worked hard to remain optimistic, but sometimes her unstable behavior was too much to bear and a kind of helpless depression would overtake me. Those were hard days that brimmed with anger and resentment, and all I could do was walk away and begin again later.

No matter how hard you try, no positive approach leads you in a straight line. Instead, it ebbs and flows as the circumstances of dementia change. During these difficult times, you must take a breath and value all that you have achieved up until this point. Don’t compare your loved one’s behavior against how they behaved yesterday, or how you hope that they will conduct themselves tomorrow. Instead, try to remain calm and give yourself credit for all the positive changes that you have been able to facilitate. Remember, this situation is never solved and its future will always remain uncertain.

Typically when I am feeling especially negative, it is because I have been focusing on the symptoms of the disease, rather than working to counterbalance its hold on Nan. It occurs when I am once again interpreting her actions in the context of who she used to be. It occurs when I forget that nothing in life is permanent and that we don’t have to understand everything that is happening around us in order to find happiness.

The reality is that there will be times when you feel sad and hopeless. There will be days when you want to walk away. This is when you have to mentally grab hold of yourself and deliberately change the thoughts that are running through your mind. Sometimes I redirect my thoughts by saying affirming statements out loud. Sometimes a good night’s sleep does the trick. Sometimes I go for a walk to clear my mind, go to dinner with a friend, or engage in an activity that I enjoy. I give myself permission to rest physically and emotionally. I remind myself that there is an entire universe outside the world of dementia.

Over time if you decide to remain positive it will become a habit. Yes, I said decide. For even with a diagnosis as horrific as dementia there are truths worth celebrating. And once I decided to open my eyes to all that remains possible, I began to see a multitude of tiny miracles swirling around Nan. I have witnessed more spontaneous demonstrations of kindness, understanding, and spirit-filled behavior than I can count. I didn’t notice them at first. I had to learn to pay attention in order to see them. And to think that they were there all along, hiding behind the distractions of my daily life, just waiting to be detected and appreciated. Even in the advanced stages of her disease, there is so much to celebrate about Nan’s life…….and your loved one’s too.

Music is the Strongest Form of Magic

” Music is a moral law. It gives soul to the universe, wings to the mind, flight to the imagination, and charm and gaiety to life and to everything. It is the essence of order and lends to all that is good and just and beautiful.” – Plato

For as long as I have known Nan she has loved music. So I knew from the beginning of her dementia that this would be common ground on which we could meet and enjoy our time together. But I never fully understood the impact that music can have on a dementia patient until I witnessed an incredible phenomenon while she was living in her unit for the memory impaired. What I saw astounded and amazed me. And when it happened over and over again, I was convinced that it was nothing short of a miracle.

Nan’s neighbors on the unit consisted of individuals from a wide variety of backgrounds. All they really had in common was that each was suffering from dementia or Alzheimer’s disease. And this is why the following story is so remarkable.

Whenever I came to visit, we always took the time to sit on her comfortable loungers and listen to music on her CD player. Typically we left her door open, so inevitably our music would drift out into the hallway. Soon after beginning the first track, a visitor or two would arrive at our door in order to listen to a Broadway melody or an old Baptist hymn. some would close their eyes and smile. Others would sway gently to the rhythm. Others would just stare into oblivion as if entangled in the entrancing net of our music. There were days when as many as ten residents would find their way into Nan’s room.

I was not amazed that they loved our music, but I found it staggering that our visitors represented all stages of dementia. It did not matter if they were newly diagnosed or staring blankly into space; they were drawn to our music. It was as if they were reacting instinctively. For me, this was proof that long after it appears like a dementia patient is nonresponsive to external stimulus, their senses are still alive and engaged. They still have that spark that seeks out loveliness.

Two particular pieces seemed to have their own special magic. When we played these our attendance grew exponentially. Both were by Johann Sebastian Bach. The first was Glenn Gould playing the French Suite No. 5 in G minor, BWV 816, Gigue, a lively and happy dance. The second was the Partita No. 2 in C minor, BWV 826, Sarabande, a slow and poignant, almost sad dance. When these pieces were played the patients gather not just in the doorway, but came deep into the room as if trying to find the music. I don’t know if they were attracted to Bach’s trademark mathematical rhythm, or if they were drawn in by the sheer beauty of the melodies. Perhaps it was both. All I know is that when Nan and I would play our Bach, patients gathered around us like a multitude of notes written on a page of sheet music. Music was a touchstone that was able to connect these patients to the outside world.

There are countless ways to bring the miracle of music into the life of your loved one. Consider taking your loved one to a local concert or accompany them to a musical performance at their facility. Scan your local television schedule for upcoming musical programs. They need not be high-brow. Nan loved reruns of The Lawrence Welk Show that airs on our local PBS station. Libraries offer a wide range of symphonic and chamber music performances on DVD and CD. If you have access to the Internet, consider downloading a personalized Internet radio station from a free service like Pandora. CDs of ocean waves or birdsong are another wonderful source of listening pleasure. Or better yet, why not place a set of wind chimes near your loved one’s window so they can hear the music of the wind?

How Could God Have Allowed This to Happen?

For years I asked myself the question that has plagued believers down through the millennia, “How could God have allowed this to happen?” Born from anger and resentment, it sat in the back of my mind only to rise to the surface whenever I was tired or upset. How could God in all his wisdom bring such suffering onto one of His flock? Nan’s, my mother-in-law who suffers from dementia, faith was strong, as was mine; it seemed like God had forsaken us. I felt we were alone in a small boat in the middle of a thick fog. Then on one seemingly ordinary day a sweet kindness silenced this question forever.

Nan had developed a large goiter on her thyroid and her doctor had ordered an ultrasound in order to check for further abnormalities. This was scheduled as an outpatient procedure at our local hospital. At this point in her disease, although Nan was still able to transfer from her wheelchair to the front seat of my car, she often refused to stand up once she was in a seated position. Because she was not accustomed to being in the outside world, she easily became distracted or afraid. When planning doctor’s appointments, I always had to add additional minutes to our travel time, just in case I had trouble gaining her cooperation.

On this particular day Nan broke her all-time record for stubbornness. It took twenty minutes for me to convince her to move from the front seat of my car into her awaiting wheelchair. I was just about to throw in the towel, when she finally relented and stood up. Along the outside of the facility there were benches for people who were waiting to be picked up from their appointments. I didn’t know it at the time, but a woman was closely watching our exchange. As I wheeled Nan into the facility, little did I know then, but I was passing by an angel.

The scan went beautifully, but I was dreading what lay ahead. Now I had to work a reverse miracle and try to coax Nan back into the car. After about three unsuccessful attempts, I heard a soft gentle voice behind me say, “I saw that you were having trouble before, so I went inside and bought her a little present in the gift shop. Maybe it will grab her attention so that she will listen to you.” I turned to see a small wrinkled woman with a broad smile and kind eyes. There in her outstretched hand was a doll wearing a crocheted dress and matching hat ornamented with a dangling price tag reminiscent of Minnie Pearl. I almost cried.

This perfect stranger was empathetic to both my frustration and Nan’s medical condition. She had taken it upon herself to try to help. And now for the best part, it worked! Before long I had Nan safely settled in the front seat holding her present. I offered to pay the woman for the doll, but she would not hear of it. She was just glad to be of help. I was limp with gratitude.

Although this occurred many years ago, I have thought of this exchange countless times since. A woman whose name I don’t even know saw that Nan and I needed help, and with no benefit to herself, came to our rescue. She made me realize that God is caring for Nan through all the special people that touch her life. Nan is a catalyst that brings out the very best in others. Now I vigilantly search for these angels. And to my wonder I have come to realize that Nan is the daily recipient of an endless stream of Godlike behavior, beginning with her caregivers and professional medical team, stretching all the way down to a kind, unknown woman sitting on a bench outside a busy medical facility on a warm summer’s day.

Glimpses of grace are all around us every day of our lives. But if we are to experience its wonder, we must change our focus. We must become attuned to the joy that grace can bring into our lives. We must break down the barriers of our heart and become open to the possibilities of unlimited gratitude and love. We must shift our attention from the measurable tenets of the material world and take notice of the often-overlooked tender mercies that lay in our path. Like the morning you felt that your friend was in pain and after telephoning, you learned that she was in need of help. Or the day you took the long way home from a college class and met your future husband. Or the afternoon a kind stranger gave a doll to a woman and her daughter-in-law in a hospital parking lot. Or when you found a pressed flower tucked between the pages of a poetry book that your late mother used to keep on her nightstand. But remember to tread lightly. Sometimes grace arrives in packages so small that you almost let them pass by unnoticed, like puddles after a thunderstorm, the smile on a friend’s face, or the song of a distant skylark.