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.

 

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.

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.

Facing the Truth

When the early stages of dementia begin to present themselves it is a particularly devastating time for the patient and their family. Because symptoms can be so subtle and seem to appear and then vanish, family members often undervalue the severity of the problem. After all they look the same don’t they? There is no visible sign of their disease. And to make matters more confusing there are times when they are perfectly rational and able to function beautifully. This feeds into a family’s collective wishful thinking that none of this is really happening. They tell themselves, ‘We are overreacting. It is just a bad day. Soon things will be back to normal. Maybe this is just a rough patch. They are getting older after all.’ Driven by fear they create a kind of grand illusion that in the final analysis only wastes time, creates conflicts and delays constructive goal setting. Fear in this situation not only blocks us from reality but can place our loved one in jeopardy.

Helplessly watching someone you love slowly change and slip away is unfathomably sad and frightening. Each new symptom is like a punch in the stomach. The slowness of it only adds to your agony and increases your fear of what the future holds. I know this first hand, because I spent nearly ten years looking after my mother-in-law Nan, as she plummeted down through the chasm of this disease.

Fear is an odd and deceptive emotion, a chameleon of sorts. One minute it can appear as anger; the next as frustration. It has a negative impact on our behavior and feelings. When fighting dementia, fear often outruns our patience and taints our common sense, leaving us to march in futile circles around the same mountain again and again. Fear stifles our compassion and constructs insurmountable walls against the truth. Fear clouds our vision leaving us to search in the dark for answers that were in front of us all along.

In order to be effective in any sorrowful situation, we must face things as they really are, accept what we know to be true and keep moving forward one step at a time. Don’t feel defeated if you have spent too long consumed with worry for your loved one. It is never too late to work through your fears and quiet the negative voices that play in your mind.By sharing my experiences I hope to show you how to move forward in this process. I want to encourage you to offer yourself the same patience and compassion that you shower on your loved one. For it was only when I stopped being afraid of Nan’s future and how it was going to impact me, that I was able to accept her prognosis and open my eyes to the many blessing still present in her life.