The Dementia Connection

Creating Joy & Meaning for the Dementia Patient by Ronda Parsons


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There Are Always Reasons To Be Grateful

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.

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Music is the Strongest Form of Magic

Musika - Soundtracks on Youtube https://www.youtube.com/watch?v=2X_2IdybTV0&list=PL9BF6B2EDB1DB8CB9:

” 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?


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How Could God Have Allowed This to Happen?

statues-and-monumentsLa croce / The cross by AndreaPucci The Abbey of San GalganoMonticiano, Tuscany, Italy

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.


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Let Evening Come

Winter sunset in the countryside THE ANIMALS ARE ALL FED --- THE COWS ARE ALL MILKED......IT IS NOW TIME TO CURL UP WITH A MYSTERY NOVEL (ROVER & PUSS RIGHT THERE AT YOUR FEET)... AND ENJOY A WELL-DESERVED EVENING.....ALL IS RIGHT WITH THE WORLD.........ccp:

Today I want you to take the time to think back and reflect on how far you have traveled on your caregiving journey. And in doing so, I want you to remember to have faith in yourself and all your accomplishments. Let yourself exhale. Allow yourself to accept the reality of your loved one’s situation and understand that this acceptance is the only pathway to peace.


Let Evening Come

By Jane Kenyon

Let the light of late afternoon
shine through chinks in the barn, moving
up the bales as the sun moves down.
Let the cricket take up chafing
as a woman takes up her needles
and her yarn. Let evening come.
Let dew collect on the hoe abandoned
in long grass. Let the stars appear
and the moon disclose her silver horn.
Let the fox go back to its sandy den.
Let the wind die down. Let the shed
go black inside. Let evening come.
To the bottle in the ditch, to the scoop
in the oats, to air in the lung
let evening come.
Let it come, as it will, and don’t
be afraid. God does not leave us
comfortless, so let evening come.


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Caring for the Caregiver – Part 2

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  • Enlist the help of your entire family. If your relatives live locally, don’t leave their visits to chance. Develop a monthly schedule so that they make regular, planned visits to your loved one. This affords you predetermined time away from your duties so that you can schedule time for activities and appointments. If you know in advance when your loved one will have visitors, you will be able to maximize your free time. If your family members live out of town, ask them when they plan to come for a visit. This may be a good time for you to schedule that much-needed vacation or just to have a luxurious, carefree weekend.
  • Pay close attention to your moods and feelings.  Research has shown that 30 – 40 percent of individuals who provide care for someone with dementia suffer from depression. Depression in caregivers can manifest into a variety of symptoms – for example, a change in eating habits, feeling tired all the time, loss of interest in people or activities that once brought you pleasure, a change in sleeping patterns, ongoing physical symptoms that do not respond to treatment, such as headaches, digestive disorders, and chronic pain. If you are experiencing any of these symptoms, seek professional help from a doctor or counselor. Help can also be found through local and national Alzheimer’s and dementia organizations. Stay attuned to your feelings and don’t feel guilty or selfish if you decide to seek help. Be kind to yourself and know that you are not alone. Many individuals in your situation have benefited from professional support.
  • Devote time to pursue your passions. Even though you are busy, take time to enjoy your favorite hobbies and interests. Find ways to channel your creative energy or learn something new. Take French lessons or that pottery class that you have talked about for years. Unleash your inner artist. Be courageous. Create something beautiful or read a new poem each day. Nourish your soul with whatever you find extraordinary and meaningful.
  • Write in a daily journal. Take time each day to write down your concerns and feelings. This will allow you to stay in touch with your concerns and feelings. This will allow you to stay in touch with your authentic self.  Research shows that journaling reduces stress and provides an outlet to freely express thoughts and feelings. It provides a neutral forum in which we can vent and resolve feelings of conflict with individuals or our current situation. By writing about our problems, we are better able to pinpoint their source and find appropriate solutions.
  • Lighten your load by taking advantage of eligible services that are available to your loved one – for example, financial support, county nursing assistance, Meals on Wheels, and Medicare-provided home health services.
  • Seek spiritual guidance. If you are feeling overwhelmed, consider making an appointment to talk to your pastor, rabbi, or priest. Ask that others remember you in their prayers.
  • Make exciting plans for the future. Schedule pleasurable events in the future so that you have something to anticipate. Buy tickets to a play or musical performance that will be appearing in your town.
  • Pamper yourself. Treat yourself to activities that reduce your stress. Spend a day at a health spa. Watch a favorite movie. Soak in a warm bubble bath. Schedule a full body massage. Do whatever relaxes you and feels luxurious.

When you became a caregiver you answered a calling. Learn to honor yourself as you do your loved one. Because in the end, no one deserves it more than you.


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Book Signing this Saturday, October 10th

Hello Everyone!

I’ll be signing copies of my book ‘Creating Joy & Meaning for the Dementia Patient’

this Saturday, October 10th from 1 – 3 pm

at the Barnes & Noble in downtown Short Pump, Virginia

11640 W. Broad St., Richmond, VA 23233

I hope to see you there!


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Caring for the Caregiver – Part 1

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When you are the caregiver of a dementia patient, no matter where you go or what you do, their situation is there with you, the proverbial elephant in the room. whether you are involved in another activity or trying to accomplish a nonrelated task, it is always there, niggling at you, distracting you from what you are trying to accomplish. The patient’s needs are never far from your mind.

But I am asking you to make a small shift in you thinking, for at least part of the time. But I must warn you that this step cannot be taken without feeling guilty. I think that every caregiver tries to live by the traditional caregiving job description: When not spending every waking moment focusing on the immediate needs of their loved one, the caregiver will feel ashamed and guilt ridden. See, there it is in writing, a rule stating that once you become a caregiver you must forfeit any desire for personal happiness.

Well, I say that it is time that you and I rewrite this rule. I say that you should stop being so hard on yourself and think of it this way: How can you create joy and happiness in the life of another individual when you are emotionally depleted and not nurturing your own zest for life?

As I have said before, caregiving is a tough business. You have to be on your toes, ready to hit the next curve ball out of the park. You need to be up to the challenge. I don’t care if you have to schedule time off and hire an aide while you relax, you absolutely must find a way to attend to your personal needs.

  • Take care of yourself physically. Schedule regular doctor’s visits and annual screening examinations. It is incredibly easy to overlook your own needs when you are coping with the demands of caregiving. Time can pass very quickly when you are embroiled in the physical and mental needs of another person. Schedule your doctor and dentist appointments in advance, mark them in your calendar, and don’t let anything or anyone cause you to cancel them.
  • Schedule time away from the patient. Give yourself permission to take regular breaks by building time off into your caregiving schedule. Ask family members to help out one day a week. Go to lunch with a friend. Take a class. Participate in an activity that brings you pleasure. Plan a yearly vacation to a relaxing destination. A change of scenery will help keep your responsibilities in perspective. And most importantly, keep reminding yourself that there is a big, wide, wonderful world outside the parameters of caregiving.
  • Accept help when it is offered. Let others show their love for you by allowing them to spend time with your loved one. This was particularly difficult for me. I saw Nan as my responsibility and didn’t want to pass my burden onto anyone else. I felt that I had to be in control of everything that happened to her. It took me quite some time to realize that my friends were sincere. they genuinely wanted to help. Once I agreed to let them sit with Nan on occasion, it was beneficial to both Nan and me. I got a short reprieve while Nan was able to meet and enjoy new people.

Part 2 will be published tomorrow. Stay tuned.