The Dementia Connection

Creating Joy & Meaning for the Dementia Patient by Ronda Parsons

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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


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.


Caregiving: An Ultimate Act of Love

Do you know that the act of caregiving makes you hero? You have incredible inner strength and possess the mightiest courage. You willingly added the burdens of another to the load that you already bear, a feat that few others would attempt. You are a brave star illuminating the darkness of night. You chose to rise above your personal needs and looked uncertainty and sadness square in the eye. You are a healer, a mender, a bell ringer calling forth your divinity to be shared with the world. You were selected for this reason. You are the difference maker, the fixer-of-things, and the architect of metamorphosis. You are a spirit-filled vessel scatting seeded blessings throughout the universe.

Caring for another individual changes who you are and how you view the entire world around you. I have never had a child but have been told countless times that being responsible for another human being, another precious life, is the most fulfilling and scary adventure that we can experience. It is a blessing filled with immeasurable responsibilities and a great many worries. Of course the sad difference between parenthood and caregiving is the eventual outcome. With parenthood comes hope for future possibilities, while caring for a dementia patient leads to sadness and inevitable loss. But both are derivatives of love, a love strong enough to transcend a rocking cradle or a quiet bedside. Either way they leave us, one to venture out into the world and the other to rest eternally upon a quiet hillside.

Caring for my mother-in-law, Nan, has shown me traits about myself that I never knew I possessed, ones that for a lifetime had lain dormant. The act of caregiving remolded me like clay upon a potter’s wheel. It has made me a better person, for I came to see the world around me with fresh eyes. What was once common is not extraordinary. What was trivial is now a blessing. What was a frustration is now a victory. What was anger has been transformed into love, much like the appearance of tiny, chartreuse leaves that burst forth after a harsh and bitter winter. Caring for Nan has shined a light into the dark corners of my life and shown me what is really important. It has forced me to reprioritize my goals and walk a different path. Was there a price? Yes, my strength was gained with the sacrifice of time and hard work, repeated again and again until all my worries and bitterness were ground to dust.

When you became a caregiver you answered a calling. Learn to honor yourself in the same way that you honor your loved one. For when you are refreshed and at peace, it is as if all your doors and windows have been flung wide open. It is then that love and compassion can pass freely in and out of your life and you will have the energy to shower onto your loved one.

Remember to take time for yourself. Because after all, no one deserves it more than you.

May you be soothed by the song of the meadowlark, comforted by the warm streams of afternoon sunshine, find relief as tender as a falling autumn leaf, and catch the peace that sails on a gentle ocean wave. And in the end, I hope that the blessings that you have bestowed on your loved one keep lifting you higher and higher, until you and the orbiting stars merge into one.