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In Tune with the Heartbeat of the Universe

Two weeks ago I introduced “Part One” of a series of articles focused on the senses, in particular the sense of hearing.

Today, I hope to illustrate the emotional impact of sound in our lives with the meditation below.

In Tune with the Universe

In Tune with the Universe

This exercise is meant to help you become acutely aware and alert to the many sounds around us, and the impact of hearing on the quality of our lives. This meditation was designed specifically for caregivers by my friend and mentor, Merle Stern. I ask that you take a few precious minutes to relax and discover the everyday heartbeat of the universe, then dwell in appreciation of our amazing sense called hearing. 

When you are ready, find a comfortable position, and abandon your weight to the chair or sofa in which you are sitting. Gently close your eyes and turn inwardly to the light within you.

Focus your awareness on your breathing. As you breathe in, feel your body relax. As you breathe out, feel the tensions leave your body.

Become aware of the variety of sounds you hear. It may be the siren in a distance; the dripping of the faucet tap; the whirring of a fan; the chirping of different birds; people talking; the radio playing; the laughter of children; the slamming of a door – the list is endless. Take as much time as you need to identify all the sounds you are hearing.

Listen now to the loudest sound, then the second and third loudest sound, until there is silence. Review what you are hearing again, but this time, rate the sounds — from loudest to the softest. There are times when the softest sound speaks louder than that of thunder. For example, the faint cries of a child in distress may speak louder than the roar of a lion. There may also be times when a voice is deliberately tuned out in order to experience silence.

Now become aware that each sound you hear is triggering thoughts. Notice how your brain automatically tries to identify the source. For example, when you hear a siren, you differentiate whether it is an ambulance or a fire truck. When you hear your television, you identify the station, or perhaps even the person speaking or singing. If there is a humming sound in your home, you note the air conditioner, or refrigerator ice maker, or washing machine. Make a mental note of the thoughts that accompany what you are now hearing.

Become aware that as you hear a sound, including a voice, you automatically make a mental note of its volume, tone, and pitch. For example, when you hear the siren, you note whether it is loud, and whether the sound is gradually getting louder or fading in the distance. Compare that to a lullaby being sung. You find it soothing, and you conclude that a baby is being rocked to sleep.

Now become aware of the vibrations that are invoked by what you are hearing. For example, your body responds differently to the sound of a siren as opposed to a lullaby being sung.

Become aware that you are giving meaning to what you are hearing. You are deciding whether the sound is soothing or disquieting. You also identify the location by what you are hearing – if the sound is near or far, going from soft to loud, or the reverse. You try to figure out the reason behind the sound.

Aug 20 man on hill with milky-way-916523_640Feel yourself being surrounded by all the sounds you are hearing. You are also absorbing all the accompanying thoughts, volume, tone, vibrations, and the meanings that you have given to them. As you immerse yourself in these different sounds, become at one with them.

At the backdrop to what you are hearing, there is silence. Take a moment and locate that silence. See if you can find the sound within the silence. Now experience the peace of silence which permeates every cell within your body…within your entire being.

In this silence, try to hear or feel the vibration of your own heartbeat. Take a moment and listen to your heartbeat. Make a mental note of your thoughts as you hear the beating of your heart. Become aware of its volume, tone, rhythm. Become aware of the vibrations and their effect on your entire body, on your relationships, on your psyche, and the way in which it infuses your spirit.

As you continue to listen to your heartbeat, experience it in tune with the heartbeat of the universe. It is like a choir of which you are one of the singers. Feel what it is like to be in this choir of the universe of which you are an important member. Become aware of the difference between hearing your own heartbeat, and when you become at one with the heartbeat of the universe, and the relationship between both.

Take a moment and jot down in your journal a few lines as to what are your thoughts, feelings, and experience at this moment.

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Sound exists in space as interactions of electromagnetic vibrations. Here is a seven-minute sample of sounds of planets, moons and rings in our solar system: https://youtu.be/-MmWeZHsQzs.

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Pablo Arellano is a Mexican composer, director and writer who is known for his movie music scores. Listen to this harp music and relax to this piece called “Walking in Heaven:” https://youtu.be/DtK8G0hypLI.

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Composer Eric Whitacre leads a virtual choir of 5,905 singers, age 6 to 98, of every race, color and creed from 101 countries around the world. Here is “Fly to Paradise.” Surround yourself with sound for the next few minutes: http://ericwhitacre.com/the-virtual-choir/history/vc4-flytoparadise.

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Steppingstones of a Caregiver’s Journey

We live in a world filled with change and crisis. I live in South Florida. The recent shootings and deaths in Orlando continue to pre-occupy the local news media. Multiple theories were advanced about the shooter’s motives in committing such a horrible crime. Many families experiencing tragedies in the USA and abroad, are mourning the loss of their loved ones and are in crisis. A friend of mine, Angel A., recently wrote a sentence on Facebook that continues to reverberate with me: “The mettle of a human being is proven by how well he deals with and overcomes challenges.”Stepping_stones_3 Wikimedia.org by Alethe (1)

Professionals say that a crisis may be a turning point or a breaking point. The theory of crises concerns how people are able to handle major disrupting changes in their lives and their impact on that person and others surrounding them. We can either “move ahead” or “move backward” and regress.

Receiving the diagnosis of Alzheimer’s disease for a loved one is certainly a crisis in their life and our own. I can still remember sitting in the neurologist’s office with my Mom and Dad when he shared the results of her neurological testing. All her tests pointed to a probable diagnosis of Alzheimer’s and vascular dementia. My heart was pounding; my hands were sweating. I felt numb inside. That was sixteen years ago! It was a crisis in my life and that of my parents. After my father’s death three years later, I became my mother’s primary caregiver. I was cast into a daunting role that caused another crisis within me. Would I have the ability to meet her needs?

Researchers note that three factors play a role in determining how effectively a person copes in a crisis. The first factor relates to your personal characteristics. These include: your age, where you live, how you solved problems in the past, how mature and confident you are.

The second group of factors relates to the crisis. These factors are: what the crisis is, how sudden was it, how controllable is it.

The third group includes your social and physical environment. How supportive are your family and friends? How accessible are community support services?

As I reflect back to that crisis period, I realize that I was somewhat prepared to take on this role. I was privileged to have had training as a counselor back in the mid-70’s. As part of that training I was introduced to the “Progoff Intensive Journal Program for Self-Development.” Dr. Ira Progoff was a psychologist who pioneered the therapeutic use of writing as a tool for ongoing self-growth. This program provides a method for keeping a journal to gain awareness about the diverse areas of one’s life and to develop a more meaningful life. Workshops are conducted throughout the USA and Canada.

stepping stones pexels-photo-86364One of the exercises in that journal program is called “Steppingstones.” This exercise asks us to reflect on eight to twelve steppingstones. These are periods of significant events throughout our life which, in hindsight, were marks of change for us. For each steppingstone event, you then outline the emotions, persons, fears, and hopes affiliated with it.

Caring for my mother was indeed a steppingstone event in my life. As I reflect on what previous life experiences and inner resources prepared me for this, I see that it was not only a crisis time, but became a period of transformation.  It helped shape me to be the person I am today.

To those of you who are thrust into a similar caregiver role, and feel you are in a crisis situation, try to analyze the crisis. Break it down into the smallest components possible. Each of these components may not seem so threatening. It will also make it easier to develop specific strategies to deal with those smaller components one by one. Here are some recommendations to prepare yourself for dealing with the crisis:

  • First, learn as much information as you can about the disease. By increasing your knowledge and understanding, you also increase your ability to cope successfully. There are numerous books, videos on line, and websites filled with resources and ways to handle a variety of stressful situations. Check out some of these at the “Resources” section of my website.
  • Second, build up a support network for yourself of family, friends, co-workers, and neighbors. If possible, attend a caregiver support group, talk to a professional counselor, or join an online group. A solid support network is critical. Not only is this support necessary for your emotional stability, but it may be helpful when you need to make objective, rational decisions.
  • Third, preserve a reasonable emotional balance by managing upsetting feelings aroused by this crisis. Work through your feelings by restructuring your thinking, such as telling yourself, “I will not let the negative things that happen today affect my mood or behavior.” Processing your feelings allows you to deal with them and let go of the negative ones. You may not be able to control what’s going on, but you can control how you react to it.
  • Fourth, maintain a satisfactory self-image and a sense of competence. Once the initial shock has worn off, get back to performing those everyday routine basic life functions. Attempt to maintain a sense of pride in doing the best you can as a caring person.
  • Fifth, take care of yourself. It’s the responsible thing to do.

Here is a reflection that will help you review your life’s journey and what has prepared you for your role of caregiver, care partner. Find a quiet place where you will be free from any distractions. Make yourself comfortable and spend a few minutes just focusing on your breathing. As you breathe in, feel your body relax. As you breathe out, feel the tensions leaving your body. Let your body and mental state become calm and relaxed.

grassy slope trees-167761_640

Visualize yourself sitting under the shade of a tree, on a grassy knoll overlooking a brook. Visualize removing your shoes. In doing so, you can feel your body relax as your feet make contact with the grass. Feel the wind in your hair and on your face.

You are aware that you have been on life’s journey for a long time. Therefore, give yourself permission to take a rest and savor the journey upon which you have embarked. You are reflecting upon where you have come from, where you are going, and what has been the purpose of your life. You envision your life’s experiences as an education—an experiential education.

You begin to look at your past life through telescopic lens and you can see a path of steppingstones leading from the house/hospital/place where you were born to the grassy knoll where you are now sitting. You see how each steppingstone has brought you to where you are at this given moment in time. Through the telescopic lens you can see the sequence of your life’s experiences in which one stone connects to the other. It is like a thread that weaves itself in and around each stone, connecting one to another. In the process, the patterns and meanings of your life unfold. What up until this time has felt like a random disconnected series of events, now seem like the necessary steps in a journey towards enlightenment.

Do you wonder what lies ahead? In the distance you can see a hairpin curve obliterating what lies around the corner and beyond. Do you wonder whether you would be able to navigate the journey that lies ahead?

You remember that there have been significant turning points along your life’s journey. There were roads taken and roads not taken. Can you identify which moments were the important  turning points in your life? There were many obstacles along your journey, but now you envisage them as opportunities for growth.

 Each steppingstone is uniquely yours, to guide you, to define your pathway or journey through life. It is a way of creating yourself, defining who you are. There are times when you may feel as though you are “between a rock and a hard place” because the choices are limiting. Remember, you do have the choice to change your attitude.

How would you like your continued journey to unfold? It is like portaging – what do you carry with you, and what do you leave behind? What do you choose to bring with you to the next place? What is the baggage that is weighing you down…slowing you down and depriving you of enjoying your journey?

When you are ready to end this time of reflection, slowly bring yourself back to the present. Write a few lines about the journey taken and the journey still to come. What has been the value for you in mapping your steppingstones?  What strengths have you discovered that you possess to deal with a crisis?

Caring for a loved one has its joys, its sorrows, its high points, and low periods. The nature of the progression of Alzheimer’s disease is ever changing. Having the confidence in your ability to take on this caregiver role will help you better cope with the changes. One of my favorite bloggers, Maria Popova, puts it this way: “It is when life bends us to its will and we don’t break that we learn what we are made of.” Realize that you possess the qualities, the “mettle,” and resourcefulness that will help you through the crisis periods.

May you experience peace, patience, courage, and joy in your caregiving journey today and everyday!

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Many thanks to Merle Stern, my friend and mentor, for composing this meditation. Feel free to pass it on to friends and family, but please give credit to Merle and this website.

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Here’s a song that will hopefully bring you some joy today. “Happiness is here and now. I have dropped my worries.” https://youtu.be/Q5kteKBfQ0I

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For information about the “Progoff Intensive Journal Program for Self-Development,” go to: http://intensivejournal.org/.

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If you found this blog beneficial, please share it with others to spread the information. Also “like” us on our Facebook page: https://www.facebook.com/CaregiverFamilies/.

Lewy Body Dementia

Little people. Children. Small furry animals. Intruders in the house. These are some of the common visual hallucinations that persons diagnosed with dementia with Lewy Bodies (DLB) experience during the course of this very unpredictable disease.

Neurons

Neurons

Slow and rigid movements, staring spells or blank looks, incoherent thinking, excessive daytime sleepiness, and loss of balance may also be indications of DLB.

“This is the most common disease you never heard of, and yet the second most common form of degenerative dementia after Alzheimer’s,” remarked neurologist Dr. James E. Galvin, professor and associate dean for clinical research at the Charles E. Schmidt College of Medicine. Dr. Galvin is also a professor at the Christine E. Lynn College of Nursing, Florida Atlantic University. I had the privilege to hear Dr. Galvin’s presentations on DLB at two recent local conferences. While I had heard of this form of dementia, I had no idea of its symptoms and the difficulties associated with getting accurate diagnoses. I feel compelled to share with you what I learned at these conferences, in the likelihood that your loved one may exhibit symptoms of DLB. Few individuals and medical professionals are even aware that DLB exists. Your family practitioner is likely one of these.

Lewy Body Dementia affects about 1.4 million people in the US. It is not rare, but is often mistaken for Alzheimer’s Disease (AD) or Parkinson’s because it has symptoms of both these conditions. It is more common in men, typically begins at age 50 or older, and is a more rapidly progressive disease than AD.

A German neurologist, Dr. Friedrich Lewy, working in Vienna in 1912, discovered abnormal protein deposits in people with Parkinson’s disease. These deposits are now called “Lewy  bodies.” They are spherical reddish structures, abnormal clumps of protein called alpha-synuclein that develop inside nerve cells. In a healthy brain, this protein plays important roles in neurons, especially at synapses where brain cells communicate with each other. In DLB, the protein forms clumps inside neurons, “gum up” these nerve cells, and thus cause the cells to die.

Slide of a Lewy Body

Slide of a Lewy Body

Lewy Body Dementia is an umbrella term for two related clinical diagnoses, and shows itself in three possible ways:

  • Some individuals start with a movement disorder that is diagnosed as Parkinson’s disease and later develop dementia. This is called Parkinson’s Disease Dementia (PDD).
  • Other individuals start with cognitive/memory problems that might be mistaken for Alzheimer’s. However, over time they develop two or more features that distinguish it as dementia with Lewy bodies (DLB).
  • A third small group of individuals present with hallucinations, behavioral problems, and difficulty with complex mental activities.

Over time, all of these individuals will develop very similar cognitive, physical, sleep, and behavioral difficulties.

According to the Lewy Body Dementia Association, the symptoms can include:

  • Impaired thinking, such as loss of planning and processing information, memory, or the ability to understand visual information.
  • Fluctuations in cognition, attention or alertness. Some days the person will be doing well; other days they will be unresponsive or seem near death.
  • Problems with movement including tremors, stiffness, slowness, shuffling gait, repeated falls, and difficulty walking.
  • Visual hallucinations.
  • Sleep disorders, REM behavior disorder, such as acting out one’s dreams while asleep, shouting and grunting.
  • Behavioral and mood symptoms, including depression, apathy, anxiety, agitation, delusions, or paranoia.
  • Changes in autonomic body functions, such as blood pressure control, temperature regulation, and bladder and bowel function.

Dr. Galvin told conference participants that there is often a delay to diagnose and treat this form of dementia because it is commonly misdiagnosed as a late-onset psychiatric disorder. It is common for the person experiencing DLB symptoms to see three to four doctors before a diagnosis is obtained. An early and accurate diagnosis is critical and essential because DLB patients are extremely sensitive to certain drugs that can make their symptoms worse. Antipsychotic medications can increase the risk of death in elderly persons with DLB. While there are no medications approved yet to treat DLB, Dr. Galvin noted that there are medications approved to offer symptomatic benefits for cognitive, movement, and behavioral problems.

Dr. Galvin was instrumental in developing and testing a tool that helps detect DLB. It is called the “Quick Dementia Rating System.” It is a 10-item questionnaire available to download free and fill out at home. It takes about 3 – 5 minutes to complete. Each of the ten items has five possible answers increasing in severity of symptoms. You choose one answer that best fits each category to get a composite risk score. Scores range from 0 to 10, with higher scores representing greater cognitive impairment.

If you suspect that a loved one may have DLB, download this questionnaire below. Then take the test with the score to your family doctor or a neurologist. Extensive testing will likely be needed before a definite diagnosis can be made, but this can initiate that process.

Dr. Galvin is hopeful that a cure is on the way in the near future. Please check out the resources I note below, especially the website of the Lewy Body Dementia Association and their videos. My hope is that more individuals can be diagnosed early on to benefit from a longer quality of life.

May you find peace, patience, and joy in your caregiving journey today and every day!

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Download the “Quick Dementia Rating System Questionnaire” here: http://med.fau.edu/research/The%20Quick%20Dementia%20Rating%20System%20Instructions%20and%20Form.pdf.

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For a booklet about DLB information, go to: https://www.nia.nih.gov/alzheimers/publication/lewy-body-dementia/introduction.

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For resources, videos, and caregiver information, check out the Lewy Body Dementia Association, go to: https://www.lbda.org/.

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Watch a five-minute presentation from Professor Ian McKeith, President, of the Lewy Body Society UK: https://youtu.be/6lw1WscrIvY.

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“Home Is Where the Heart Is” – Part 1

“I want to go home. Please take me home now!” This was my Mom’s frequent request for a period of a few months. At the time, she was residing in a dementia unit at an assisted living facility after my father passed away. Her “home” was now the second floor of the facility, and a one-room bedroom with a bathroom that she shared with another female resident.

Home, Sweet Home

Home, Sweet Home

It broke my heart to hear Mom’s plea. I often struggled for ways to distract and re-direct her.  I even wrote a poem, “Home, Sweet Home,” about my feeling of helplessness, and included it in my memoir, Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s, and Devotion.

This blog’s title is from a familiar quote, “Home is where the heart is.” It is attributed to Pliny the Elder, a Roman author, naturalist, and natural philosopher. Pliny understood its implications back in the first century AD. The concept of “home” has many emotional connotations for each of us. For me, home is a place of comfort, security, love of family, refuge from the world’s conflicts, where I can be myself.

Dementia care experts tell us that the “home” a person wants to return to is their childhood home. The need to “go home” often signals a need for privacy, for comfort, for security. It can be especially frustrating for you, the caregiver, to hear this plea when your loved one is already home, or are living now with you, their daughter or son.

For someone with Alzheimer’s, it is a “normal” behavior, given the confusion, anxiety, and loss of control they may be experiencing at the time. Their long-term memory of their childhood home is still intact. Telling them they are home, does not relieve their anxiety. Reasoning or using logic does not work in this situation. Arguing will only make things worse.

The Journey Home

The Journey Home

Instead of correcting them, here are a few ideas I gleaned from experience and from other caregivers:

  • Try to understand why they may be saying this. What is it that they really mean? Sometimes this might be your loved one’s way of letting you know they are scared, or anxious. They just need extra reassurance and comfort. A gentle hug, or stroking of the shoulder, arm, or hand might help. Simply sitting with them, or giving them a soft blanket or a stuffed animal to cuddle might also calm them.
  • Is there a certain time of day when they exhibit this need to go home? Is there a pattern? If it occurs late in the afternoon or early evening, they may be exhausted from the day’s activities. This is their way of telling you they are tired out. If that is the case, letting them rest while you put on soft music may ease the situation.
  • Agreeing and redirecting might work. Saying something like, “We’ll go as soon as I can tidy up here. Would you like to help me?” Or, “Let’s get your coat so you won’t be chilly.” Just the act of getting ready can be calming. Then as you walk to the closet, re-direct them, chatting about something pleasant, stop in the kitchen to get a drink, or get involved in some activity that they like to do.
  • They may need exercise or a change of atmosphere. Respond by saying, “Let’s go,” and take them for a walk in the neighborhood. You might even have to drive them around for a few minutes, then suggest a stop, at a favorite spot of theirs, like a McDonald’s, a park, etc.
  • Have you recently redecorated, or moved furniture around? Is the place where they live a new and unfamiliar environment for them? Have they recently moved into your home or an assisted living facility? If so, can you make their room a place filled with familiar furniture, a favorite quilt, photographs, knick knacks that they love, items that are familiar to them?
  • Is there a set of circumstances that trigger this request? For example, are children coming home from school, or is it rush hour time with busy traffic? These triggers might signal that your loved one needs to be home. In my mother’s case, she was frantically pacing the corridor one afternoon when I came to visit. She kept saying, “I have to get home before the kids, or Mom will be mad at me.” It took me a few minutes to finally figure out that when Mom was in high school, she needed to get home to care for her younger brothers as her parents both worked in their grocery store.  It was her responsibility to look after them until supper time. Mom felt an urgency to follow the same routine she did while growing up. I was able to distract Mom by telling her to come with me to her room so that I could call her mother on the phone and let her know Mom was on her way. She calmed down and walked with me. By the time we got to her room, Mom had forgotten why we were there. I was very relieved that I didn’t have to “fake” a phone call to her deceased mother.
  • Try to figure out what might make your loved one feel the safest. Make up an excuse: “The house is being painted right now. We’ll go later.” Or pull out some photos of their childhood home, and say, “We can’t go today, but tell me about your home. What was your favorite room?”
  • Check for any physical discomfort or personal hygiene needs. They may not be able to tell you they have to go to the bathroom, need a nap, or are thirsty and need a drink of water. Something as simple as taking care of one of these needs may resolve the matter of going home.

The 20th century British playwright and poet, T. S. Eliot, noted that “Home is where one starts from.” It all comes down to you, the caregiver, remaining calm and composed, trying to discover the underlying meaning of their request. Sometimes you just have to get creative. If you rule out environmental factors, a stimulus overload, physical or emotional needs, you’ll likely be able to find what will reassure and bring comfort to your loved one.

In my next blog in two weeks, I will continue this theme with a “Part 2.” It will include a reflection for caregivers. I hope it will help you to imagine what it might be like when a loved one pleads with you to take them home. Please stay tuned!

May you find peace, patience, and joy in your caregiving today and every day!

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CNN’s Dr. Sanjay Gupta traveled to the Netherlands to show a model village, a New Age “home,” for persons with dementia. Take a look at this 23-minute video: https://youtu.be/LwiOBlyWpko.

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There have been many songs written about going home. Here is a YouTube video of the song John Denver made famous, “Take Me Home, Country Road,” with lovely photographs:  https://youtu.be/oTeUdJky9rY.

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Daily Manifestations of Love

In the 1943 classic best-selling children’s book, The Little Prince, by Antoine de Saint-Exupery, the wise fox teaches The Little Prince about love, friendship, and trust. “Here is my secret. It’s quite simple. One sees clearly only with the heart. Anything essential is invisible to the eyes.”

Cover to the book painted in 1943 by the author

Cover to the book painted in 1943 by the author

The background scenery to The Little Prince is a desert far from civilization. The aviator-narrator’s plane has crashed. Here he meets the mystical boy who is searching for a way to get back home to his asteroid B-612 to tend to his rose.

Spoiler Alert: The Little Prince does find the answers to his questions about what is important in life. He decides to return to his planet to tend to the rose that he loved. Love makes a person responsible for the beings that one loves. Our loved ones can teach us the true values and meaning of life and love if we are open to “seeing with our hearts.”

In some ways this story is really for adults, as it is a poetic allegory of human nature, loneliness, love, and loss. To a person with dementia, it may seem, at times, as if their world is a desert, void of familiar signs and familiar faces. This desert, however, is not arid. It flowers with emotional, musical, and long-term memories.

Your love nurtures the blooms of memories.

Your love nurtures the blooms of their memories.

“What time is it? What day is this?” These questions, repeated over and over again, are really their attempts to connect to us, to communicate, to make sense of their everyday world. A person with dementia is not intentionally trying to make your life difficult. Each moment is a new experience for them, at times a frightening one.

People with dementia pay more attention to what they see than to what they hear. Our body language and facial expressions give them visual cues. The way you approach your loved one, then, can make a big difference whether they interact positively with what you are asking them to do, or instead become belligerent or upset. If you are calm, they will get calm, too.

We, as caregivers, must attempt every day to “see clearly with the heart,” to see the person, not the dementia. This is even more a necessity when our loved ones are in the stage of their disease when they are no longer able to verbalize their needs or feelings. We become our loved one’s reality. They depend on us to help them stay connected to the world. “Seeing clearly with the heart” takes a conscious, patient, loving effort, especially during times of anger, frustration, or misunderstanding.

It is our role to understand the clues our loved ones give us about their wants, needs, and feelings. Looking with the “eyes of the heart” enables us to look beyond their behaviors, to check their non-verbal cues, and to reassure them that we care and want to understand and help.

There are many instances each day when you have opportunities to manifest your love. Here are just a few:

  • Focusing on what skills they still have to do things that give your loved one a sense of accomplishment;
  • Being patient by waiting while your loved one searches for a word;
  • Treating them the way you want to be treated;
  • Engaging in activities that reduce their boredom;
  • Enjoying a laugh, a walk together, an activity they love to do;
  • Modeling how to do activities of daily living, such as taking a bath or dressing oneself;
  • Reassuring them when they are uncertain how to do things;
  • Providing a “comfort zone” in the home where they feel safe and secure;
  • Redirecting them when they get confused;
  • Comforting them when they cry or are fearful;
  • Detecting their pain when they are distressed;
  • Accepting the reality of this disease.

“Seeing clearly with the heart” is an attitude that requires cultivation and practice. Here is a reflection that may help:

At the end of each day or most days, find a quiet spot. While focusing on your breathing, try to become at one with your surroundings. Take a moment and scan over your day.

Remember all the love and support you received. Think of each person who entered your life, one way or another, near or far. Think of the acts of love you received, no matter how small; e.g., the stranger who held the door open for you as you left the supermarket. Include your pets, the bird that was sitting on a branch in your backyard chirping away, diffusing your feelings of frustration or anxiety.

Think of one moment, even though it might be fleeting, of the love you received from your Loved One. Hold on to that feeling for a few moments and become aware of how it transcends all the other experiences.

For those who live far away, feel their presence and their love for you, and how they continue to express their love for you. On special anniversaries, remember those who have died and the love they have given you.

And finally, recall your own acts of love that day, no matter how small or simple, like taking time out of your busy schedule to fill the birdbath with water on a hot summer day.

At the very end of this exercise, try to identify what has been the value of this experience for you. How can you integrate this into your daily life?

In this season of spring, Easter, and Passover, may we look at life and our loved ones with new eyes and a renewed heart! I wish you peace, patience, and joy in your caregiving journey!

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Many thanks to my friend and mentor, Merle Stern, for composing the reflection on love.

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This is a short video about an experiment of looking at loved ones with new eyes: https://youtu.be/VsojBgHqeg4. I guarantee it is a tearjerker.

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Here is the opening song, “Somewhere Only We Know,” to a film made about The Little Prince: https://youtu.be/ATiJ7i8m8rY. This movie clip is when the tamed fox, played by Gene Wilder, gives his secret to The Little Prince: https://youtu.be/FOA7CcVOFIs.

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Unload the Baggage of Unhealthy Guilt

If you are a family caregiver, you are an incredible person, in my estimation! Being a caregiver for a loved one diagnosed with dementia is at times emotionally and physically exhausting, especially as the disease progresses.  Your life doesn’t need any additional burden.

Unnecessary Baggage

Unnecessary Baggage

To be blunt – no caregiver can afford to carry around the baggage of  “caregiver guilt.” It is a toxic, consuming emotion that only drains and wastes one’s energy needed for other tasks. Let’s take a closer look at what it involves.

Guilt is a complicated emotion. Just to clarify from a psychological perspective, there is “good” healthy guilt and “bad” unhealthy guilt. Healthy guilt serves as an internal moral compass that alerts us that we have done something wrong, acting against our own values or convictions. When our guilt is healthy, we take responsibility for the choice we made. We are accountable for our action, and then try to do what we can to remedy the situation. Sometimes asking forgiveness will be necessary on our part.

Unhealthy guilt is an exaggerated sense that we have done something wrong. It serves to overwhelm and burden us. This tends to happen whenever we take care of our own needs and say “no” to someone else’s. Saying “no” has nothing to do with loving or not loving. It usually has to do with the reality of the situation. Unhealthy guilt also saddles us when we constantly berate ourselves for an imagined wrongdoing, apologizing excessively beyond what is necessary.

From time to time, we may feel resentful because the illness has changed our lifestyle. From time to time, we may become crabby, short-tempered, or frustrated. From time to time, we may have to make decisions or take a course of actions that are not agreeable to our loved one or other family members. From time to time, we may blame ourselves that we did something wrong when our loved one is angry with us. These are all feelings that surface in caregivers and can lead to unhealthy guilt.

I agonized when we had to make the decision to place Mom in an assisted living facility. I felt guilty that I wasn’t able to take care of her in my home, but had to place her in the hands of strangers. I later realized that Mom needed so much more care than I could have ever given her. I remained involved in her care, but also had the energy to devote to my husband, my job, and balance other commitments.

Alzheimer’s is a disease that NO ONE has control over. It runs its course. Changes in a loved one’s behavior are part of the disease progression. Your loved one will have good days and bad days. You, the caregiver, will have good days and bad days. A psychologist friend of mine calls caregiving for a loved one with Alzheimer’s a “bottomless pit at times. There is always more care that can be given.”

We need to face the fact that there is no such thing as a perfect caregiver. Trying to be one is a recipe for failure. If caregiving becomes your identity, “who you are” rather than “what you do,” it is likely that you will consider any mistake or deficiency a personal failure. Is your guilt benefiting your loved one? Is your guilt serving you in some way?

Here is an exercise to help you reflect on an issue or incident where you felt or still feel guilty:

Gently close your eyes and focus your awareness on your breathing. Hear your own voice whispering to you, “I am calm and relaxed. I am calm and relaxed.”

Bring into focus the incident that gives you a feeling of guilt. Visualize reliving that experience.

Return to the awareness of your breathing and the whisperings of your inner voice.

Identify all aspects of the incident for which you can take responsibility (e.g., blaming, making accusations without having the fact, escalating the problem, making insinuations, not listening, yelling or shouting, knowing better at the time, etc).

Identify all aspects for which you cannot take responsibility (e.g., the circumstances at the time, other people’s interventions, your physical condition such as illness or fatigue, the choice seemed right at the time, etc.)

Now visualize how this event would have evolved if you had not done what you did or had not made your specific contributions.

How would you have liked to present yourself ?

Return to the awareness of your breathing and the whisperings of your inner voice.

If you had the chance to live this experience over again, what would you do differently?

Now visualize and replay this incident having the insights and hindsight you have gained about yourself.

Can you do better the next time if a similar incident were to arise?

When you have made all the changes you have identified, return to the awareness of your breathing.

Notice the feelings and sensations in your body. Notice the sounds around you.

When you are ready, gently open your eyes, noticing where you are, and how you are feeling.

Jot down notes about what you have learned from this experience.

How will you integrate this in your daily life?

What has been the value of this experience for you?

If you continue to struggle with unresolved guilt that controls or torments you, please consider talking to a trained counselor. They may help you feel safe enough to talk about things that you consider too shameful to admit and rectify that have been buried inside, perhaps for a long time. The Alzheimer’s Association has a 24/7 helpline (1-800-272-3900) where you can speak to a professional about counseling services.

If caring for a loved one begins to feel overwhelming and too difficult to manage, it is time to consider bringing in home care help or placement in a licensed facility.

suitcases-pixabay1181806_640There is no magic solution we can take to overcome unhealthy guilt. For our mental well-being, each of us has to learn to cope, and find our own ways to discard unhealthy guilt. We have to stop berating ourselves, accept what’s done, make amends to fix or correct any damage, and decide to let it go. Do some psychological “spring cleaning.” Make that decision today to unload the baggage of unhealthy guilt. Your caregiving role will be that much lighter!

May you find peace, patience, and joy in your caregiving today and every day!

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I want to acknowledge my friend and mentor, Merle Stern, for composing the above reflection on guilt. Thank you for your support and encouragement.

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Peter Rabins, MD, MPh, is the Director of Geriatric Psychiatry and Neuropsychiatry at John Hopkins University School of Medicine. Here is a six-minute YouTube video where he discusses caregiver guilt. Click here: https://youtu.be/l5-s68-hngk.

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According to The Old Farmer’s Almanac, March 20 is the first day of spring here in the USA. Meteorologically speaking, the official spring season always begins in the Northern Hemisphere on March 1 and continues through May 31. I think there’s no better way to celebrate this season than by listening to Vivaldi’s “Spring, 1st Movement.” For your enjoyment, here’s a version mixed with a video of blooming spring flowers: https://youtu.be/znptyp4apW0.

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Compassion and Empathy are Caregiving Essentials

Last year I took the time to re-read one of our modern day classics, To Kill a Mockingbird, by Harper Lee. It was published in 1960 and won a Pulitzer Prize. There is a passage from the novel that continues to linger in my mind. It’s when Atticus Finch imparts this piece of wisdom to his daughter Scout: “You never really know a man until you understand things from his point of view, until you climb into his skin and walk around in it.”

Footprints in the Snow

Footprints in the Snow

Another great American author and poet, Henry David Thoreau, puts it this way in Walden: “Could a greater miracle take place than for us to look through each other’s eyes for an instant?”

I’ve reflected upon these passages for quite a while. As a caregiver, is it really possible to climb into another’s skin and imagine what it’s like to be them? Can we really experience their world from their perspective? How might it change the way we manage from day to day if we could?

To me, these two quotes cited above refer to the qualities of compassion and empathy. Compassion is that human emotion in us that is prompted by the pain of others, and one that gives rise to our desire to alleviate another’s suffering. Empathy is a learned skill that takes practice. Both qualities can become second nature. They are vital in developing an understanding of our loved one’s behaviors, frustrations, and daily challenges. These qualities help us cope and negotiate with the world from our loved one’s perspective, not ours.

When I was in training to become a counselor, I was blessed to have two marvelous co-directors of the program that I attended at St. Paul University, Ottawa. Merle Stern and Rev. Adrian Visscher, SCJ, became my mentors and good friends over the years. Part of my training involved experiential exercises. These sessions were intended to sensitize us to what people who seek counseling might be experiencing in their troubled lives. This training enabled us to develop our skills so as to become compassionate and empathetic counselors.

Despite professional training, I must confess that my years of caring for Mom were still challenging ones. At times, I thought I was failing her, but by trying frequently to imagine what the illness and the world were like for her, I grew in wisdom, compassion, and empathy. It also helped give me more patience and strength to deal with the daily stresses. Caring for Mom redefined my entire being for the better.

If you have had similar experiences, I invite you to try this exercise below, visualizing in your mind that you are your loved one with the dementia.

EXERCISE

(Adapted from a Reflection written by Merle Stern)

Find a quiet place…Close your eyes…Focus on your breathing.

Let your mental state become calm and relaxed.

Visualize yourself for a moment crawling into the skin of your loved one.

You are wearing the familiar clothing of your loved one, sitting in the same manner.

You are living in a body you do not recognize as your own.

You have no memories from one moment to the other.

You have memories from way back, but you are unable to plug into these memories on your own.

Sometimes when someone triggers those memories, it feels like light shining in the darkness.

Everyone around you seems like foreigners; in fact, you feel like a foreigner to yourself.

You do not know who you are.

When you hear your name, at times you do not know it is your name.

You feel disconnected from everything and yourself.

It is a strange world in which you live–no connections–no benchmarks. 

Feel what it feels like to live this every moment of your waking day.

Gradually phase out this experience…focusing on your breathing.

Gradually feel yourself moving into your own space.

Take a few moments now to reflect on what has been the value of this experience for you. How will you be able to use it? Visualize a moment when you could have used the insights gleaned. Return to that experience and replay the same scenario with your coming from where you are at this moment, and the insights you have gained.

What has been the value for you? How do you think this will be of value now in your interactions with your loved one? If you keep a journal, you may want to write about the insights you have gained.

Compassion and empathy will not drain, but will enliven you! Inadequate as you may feel at times as a caregiver, remember that you have phenomenal strength, and a capacity to be compassionate and empathetic under the most stressful moments.

Sunday is Valentine’s Day, a perfect time to take a few minutes to reflect on what makes your caring meaningful and not burdensome. There may come a time in the stages of dementia when your loved one may not remember you, or be able to call you by name. The important thing is that YOU remember your loved one and the person he or she once was.

I’d like to end with this quote, author unknown: “To love someone is to learn the song in their heart and sing it to them when they have forgotten it.”

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love pixabay-1125204_640For two weeks, starting midnight, Sunday, February 14, Valentine’s Day, I am hosting a contest on the website “Goodreads.” Log on for a chance to win a free copy of my new book, Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s and Devotion. I will even autograph the book. The contest will end at 11:59 PM, Sunday, February 28. Click on this link to take you to my website’s News and Events page for more information. Then click on the title to take you to the Goodreads page. Remember—the contest will not begin until Valentine’s Day!

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Bill and Glad have been married for 50 years. Glad was diagnosed with Alzheimer’s. Bill talks about his love for her in this short video, “What is Love?” Take a look: https://youtu.be/GH5n9lVZcM4

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The Social Care Institute for Excellence has come out with a series of videos about dementia. “Dementia from the Inside” is a seven-minute video that gives the viewer a feeling and perspective for what it must be like to have dementia: https://youtu.be/Erjzl1WL8yQ.

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This Valentine’s Day, celebrate your years of loving, even though your loved one may not be able to do so. If you are caring for your spouse, take time to watch and listen together to “One Hand, One Heart.” This song is from the 1961 Academy Award winning musical, inspired by Shakespeare’s play, Romeo and Juliet: https://youtu.be/_A0fVWomF90. It’s a  musical /visual Valentine’s Day card.

Self-Care Is a Necessity

Smokey the Bear was a mascot created in 1947 to educate the public about the dangers of wild fires. His slogan was, “Remember…only YOU can prevent forest fires.”

Fire

Fire

I consider chronic stress as a “wildfire” that can take over a caregiver’s health. That is why I emphasize that self-care is a necessity for caregivers, not a luxury! Caregivers typically experience chronic stress day in and day out over long periods of time. The caregiver’s life increasingly fills with demands and interruptions. It is imperative that you must do things that are helpful and healthful, or you will not be able to manage for the long haul.

Here are some symptoms of caregiver stress:

  • Feeling overwhelmed
  • Caregiving gives you little satisfaction
  • Sleeping too much or too little
  • Gaining weight or losing weight
  • Irritability and resentment
  • Chronic sadness
  • Frequent headaches or health problems
  • Having trouble relaxing or concentrating
  • Loss of interest in favorite activities
  • Abuse of alcohol or drugs
  • Views self as victim and sometimes as a martyr
Forest Fire

Forest Fire

What can you do to counteract these symptoms? First, protect your own health. Set personal health goals; e.g., a sleep routine, healthy meals, time out for yourself. Speak to your family doctor. Make sure you have regular physical checkups to determine if there are any physical issues that need to be addressed.

Second, keep in contact with family and friends. Let them know what is going on in your life. Caregiving can be pervasive, but you can’t let it be all-consuming. At times you may feel like you are too tired to engage socially. However, you need to interact and have a social life. Set up respite care, even if only for a few hours each week, just to give yourself a break. Check out the website, “LotsaHelpingHands.com,” to organize meals, rides to medical appointments, and visits.

Third, plan for regular exercise each day. Caregivers who exercise regularly have less depression. One hundred fifty minutes of exercise a week is the gold standard. If you cannot go outside for a walk due to bad weather, try a power walk around your house. Start for five minutes, then work up to ten and fifteen minutes. Find an exercise routine on YouTube and work along with it for twenty minutes.

Fourth, find a support group to attend. The more you understand about the progression of the disease, the better able you will be to cope. If you can’t leave the house, there are resources on the internet that connect you with groups of caregivers who understand the stresses. There are also training videos to watch on the internet. Call the Alzheimer’s Association 24/7 helpline (1-800-272-3900) when you are in need of information. Their highly trained and knowledgeable staff can help you with:

  • Understanding memory loss, dementia and Alzheimer’s
  • Medications and other treatment options
  • General information about aging and brain health
  • Skills to provide quality care and to find the best care from professionals
  • Legal, financial and living-arrangement decisions.

The Alzheimer’s Association 24/7 Helpline also features:

  • Confidential care consultation provided by master’s level clinicians who can help with decision-making support, crisis assistance and education on issues families face every day
  • Help in a caller’s preferred language using their translation service that features more than 200 languages and dialects
  • Referrals to local community programs, services, and ongoing support.

I encourage you to join my presentation, “A Trove of Tips for Managing Caregiver Stress,” on January 19, 7:00 PM (EST). This free one-hour webinar is sponsored by fellow blogger Mike Good and his website, “Together in This.” You can register at: http://tintcaregiverstress.webflow.io/.

Remember, only YOU can provide self-care and prevent caregiver burnout!

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 If I had to pick one song that always calms me down, I would choose, “Gabriel’s Oboe,” by Ennio Morricone, from the movie, “The Mission.” See if it has the same effect for you: https://youtu.be/Dxxg6NenmBQ.

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Grateful living is one of the most valuable things that can be given to us. Brother David Steindl-Rast, OSB, discusses the connection between happiness and gratefulness in a 2013 TED Talk. His formula for our practice of gratefulness is: stop, look, go. Listen to his fifteen minute presentation: www.gratefulness.org/resource/want-to-be-happy-be-grateful.

I wish you peace, joy, patience, and courage in your caregiving journey! 

 

A New Year – A Healthier You

Welcome to a new year for loving deeply! Traditionally, New Year’s Day is a day of new beginnings, of resolutions and intentions.

Aurora Borealis

Aurora Borealis

I’m a failure when it comes to keeping New Year resolutions! I’ve tried the “losing weight and exercising more” resolution more times than I care to admit. What I realize with each passing year is that “time” is a precious gift. “Today” is all we can really count on with any certainty. Although it’s not strictly a resolution, I strive now to make every day count, and to cherish the “small stuff” in life.

As caregivers, I hope you savor those moments when things go well for you and your loved one. I hope you mark your daily triumphs, not focus on what didn’t go well that day. If you don’t, you may begin to feel that your efforts are meaningless. You made it to another year, but at what cost to you? We want to do what is best for our loved ones, but often to the detriment of our physical, emotional, and spiritual well-being.

Tragically, statistics tell us that about one third of caregivers burn out, get sick, and die before the loved ones they are caring for do.  (Agingcare.com) This was the case with my father.

The fourteenth century Sufi mystic and poet, Rumi, gives a marvelous poetic image to caring for ourselves and others: “Copper doesn’t know it’s copper, until it’s changed to gold. Your loving doesn’t know its majesty, until it knows its helplessness.” (Coleman Barks, trans., The Essential Rumi, 1995.) Turning copper into gold comes from the medieval tradition of alchemy.

Saindak Copper & Gold Mine, Saindak, Balochistan

Saindak Copper & Gold Mine, Saindak, Balochistan

Alchemists experimented with how to transform base metals into gold. Often the times when we feel so helpless against the disease of dementia is when we discover the deepest sources of our loving. But this discovery and staying power take strength, patience, resilience, and good health on the part of the caregiver.

Therefore, I’d like to put forward three resolutions for your consideration in 2016. One, be more gentle with yourself and explore befriending yourself this year. I like to call it developing “self-compassion.” Remove the personal barriers to self-care and self-compassion by identifying what is in your way. Do you think you are being selfish if you put yourself first? Do you have difficulty asking for what you need? If you ask for help, do you feel inadequate? If your compassion does not include yourself, it is incomplete.

Two, make your physical and mental health a priority, Make sure that you have your regular physical checkups. Find the time, even if it is a half hour or hour a day, just for your mental and social well-being. When I was caring for my mother, I learned that I needed to look after myself in order to give her my best self.

Three, seek respite care, and join a support group, if you don’t already have one. Chances are you find yourself so busy during the weeks that you remove yourself from interacting with others. There are endless challenges in being so close to those whose mind is going, and who can’t care for themselves. It will be extremely difficult and stressful to get through this on your own for the long haul.

Check your local chapter of the Alzheimer’s Association or Area Agency on Aging to find support groups that meet throughout the year. These are often led by a professional counselor. You can also plug into social networks. Internet tools and websites let caregivers vent, get helpful information, and even ask for assistance from others. Join a Facebook community. Four of the ones I am familiar with are: USAgainst Alzheimer’s, CaregiverMonday, UnpreparedCaregiver, and Family Caregiver Alliance Caregiver Online Group.

CaregiverMonday.org is an initiative of the nonprofit Monday Campaigns. It emphasizes that the key to staying healthy is to carve out a dedicated time at the beginning of each week to focus on tools to keep healthy habits consistent. A good habit to form is to use Monday as a checkpoint in time to remind yourself of what you have done for yourself lately. Again, whether it’s a half hour or five hours, it really doesn’t matter, as long as you take some time to refresh yourself each week.

Consider registering for a free webinar in January on helpful tips to manage stress in the new year. I will be partnering with another blogger, Mike Good, as his featured presenter, Tuesday, January 19, at 7:00 PM (EST). His website is “Together in This.” You have to register to participate. Here is the link to the registration form (http://tintcaregiverstress.webflow.io/.

There will be unexpected challenges and setbacks, fresh goals and accomplishments in the coming year. No matter what you might encounter, remember to look after yourself in order to give your best to your loved one. The German poet and philosopher Johann Wolfgang von Goethe wrote, “We must always change, renew, rejuvenate ourselves; otherwise, we harden.”

May each day of the coming year be filled with “golden” moments to celebrate! May you find support, comfort, peace of mind, and strength of body and soul for a healthier you!

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Much of everyday life may feel beyond your control at times. All you can really control is your attitude, and the way you take care of your own health. To help release all the tensions of 2015, and start 2016 with new energy and vitality, listen to my favorite Piano Guys performing Vivaldi’s “Winter,” and Disney’s “Let It Go.” (thepianoguys.com/portfolio/let-it-go)

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For information on self-compassion, and to test how self-compassionate you are, check out this link from Center for Mindful Self-Compassion: self-compassion.org/test-how-self-compassionate-you-are.

Giving Thanks for Family Caregivers

The holiday seasons of Thanksgiving and Christmas are fast approaching. This time of year can cause mixed feelings for those of you who have a loved one living with dementia. It’s very common for caregivers to experience a sense of loss for the way things used to be.
Cornucopia
It’s also easy to feel guilty about what we think we “SHOULD” do, or how we think we “SHOULD” feel. You don’t need to burden yourself with these negative thoughts. Get rid of the “Should’s!”

Instead, take a few moments to quiet your thoughts, close your eyes, and picture in your mind’s eye, what qualities you would like to experience this busy season.

Feel yourself radiating with positive energy. Feel a new vitality entering your mind and body, opening up space for compassion, for strength, for patience, for joy, as you continue in your caregiving role. To the world you are one person, but to your loved one, you are the world. Repeat this mantra during the holiday season: “I am a gift to my loved one, and I have gifts to share.”

Family caregivers are dedicated people, and for those loved ones of yours who are unable to thank you themselves, I composed this litany. May it bring comfort to you and give you a sense of what gifts you share day in and day out, not just at the holiday time! May you and your loved ones have a Blessed, Peaceful, and Joyous Thanksgiving!

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A Litany in Thanksgiving for My Beloved Caregiver

My dearest one,

My disease may be at the stage where I can’t remember any more to say how much I love you, or thank you for your dedication in taking care of me.
So here is a litany of all the things I would tell you this holiday season, if only I could.
For encouraging me to do what I’m still capable of doing and not be condescending,…Thank you!
For distracting me in a gentle way when I do something that embarrasses you in public,…Thank you!
For patiently answering my questions, and never saying, “I told you that already ump-teen times,”…Thank you!
For soothing and calming me when I am frightened,…Thank you!  

Mother and son holding hands

Mother and son holding hands

For holding me tight and caressing me when I am confused and scared,…Thank you!
For helping me retain my dignity and my sense of identity,…Thank you!
For spending time doing things that we enjoy together,…Thank you!
For all the little things you do to show you care that I may take for granted,…Thank you!
For forgiving me in those times I may unknowingly hurt you,…Thank you!
In my good days and in my horrible bad days,…Thank you!
Through my tears, my sadness, my pains, my joys, my laughter,…Thank you!
For letting me know you will keep loving me no matter what,…Thank you!
You are a GIFT to me, and I love you!

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A Meditation on Gratefulness
For a five-minute meditation on gratefulness, please watch “A Good Day.” The voice belongs to Brother David Steindl-Rast, a Benedictine monk, author, and spiritual leader. I hope this will make your day a joyful one: https://youtu.be/3Zl9puhwiyw.
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A Thanksgiving Song
Gregory Norbet was a Benedictine monk at the Weston Abbey, Vermont, when he composed and recorded this song, “All I Ask of You.” Take a few extra minutes today to listen to this hymn and reflect on the lyrics: https://youtu.be/LtikX0fmCpY.
I think it is a great song for Thanksgiving.