Gratitude for Family Caregivers

Worrying vs. Caring

I recently traveled to Guatemala. At the end of one of our excursions, our tour guide handed each of us a goodbye gift. It was a small handcrafted pouch of “worry dolls.” He explained the legend surrounding this custom.

Worrydollcraft as featured on Etsy

Worrydollcraft as featured on Etsy

Many generations ago, the indigenous people from the Guatemalan highlands created these dolls as a remedy for worrying. Before going to sleep at night, a person would tell their worry to as many dolls as necessary. Then they would place these tiny dolls in a cloth pouch and put it under their pillow. The dolls take over worrying so that the person can then sleep peacefully through the night. In the morning the person awakens without the worries that the dolls took away.

There is a Swedish proverb: “Worry often gives a small thing a big shadow.” I used to be a “worry wart” in my teen years and early adulthood. My worries usually came from anticipating the worst that could happen regarding a situation. This was the stressful part – anticipation – and usually the worst never came about. Worry was really a drain on my body and spirit. The process of maturing taught me that worries don’t change the outcome of things.  As Corrie ten Boom wrote, “Worry does not empty tomorrow of its sorrow. It empties today of its strength.”

One of my consistent worries while caring for my mother was what would happen to her if she were taken alone by ambulance from her assisted living facility to the hospital while I was at work. I describe this in my memoir, Elegy for Mom. This actually happened on several occasions. My worry was that she would not be able to describe what was wrong or the location of her pain. Consequently, the doctors wouldn’t know what to do to begin treatment. Each of those times when I arrived at the emergency room, Mom appeared calm. She seemed to know she was in a hospital. I was the frightened one – not Mom! I later found out that the nurse at Mom’s assisted living facility had given the medics a file folder containing all her health issues and medications to take along with Mom in the ambulance.

When you care for a loved one with dementia, I don’t believe you can ever be completely “worry-free.” There will be times when you will worry. You may even feel by worrying that you are doing something “useful.” Perhaps you are underestimating your ability to cope with the challenges of caring for a person with dementia. Worry can take a toll on your sleep, tax your immune system, drain your mental and physical energy, send your anxiety levels soaring, and turn into a cycle of self-perpetuating negative thinking.

Sometimes worry can be a good thing. For example, if there is an actual threat, it may spur you to take action or solve a problem. However, if you find yourself starting to become overwhelmed with worry, here are a few questions to ask yourself:

  • Is your worry productive or unproductive? Will it help you or hurt you?
  • Does worry limit you and cause you to panic or freeze from thinking clearly?
  • How much does worry interfere with your life?
  • Is the problem solvable rather than an imaginary “what if?”
Image courtesy of Stuart Miles

Image courtesy of Stuart Miles

Negative moods, like guilt and shame, even physical states like pain, tiredness, or fatigue can fuel worrying. Worry hinders rather than facilitates effective problem solving. It is not an alternative to coming up with practical ways to tackle a problem. Try these suggestions to resolve the matter:

  1. Talk about your worry to a close friend or family member. Getting it out often helps make it easier to see the real issue for what it is. A trusted family member or friend may help you find a more useful and practical perspective.
  2. Write it out. Make a worry list and then order them. Jot down what triggered the worry. What is the worst that can happen? You may start to see patterns.
  3. What is one small step you can take to start improving the situation? Can you come up with a Plan A, Plan B, or even a Plan C, if needed?
  4. Learn more about the issue. Perhaps reading about the disease, or discussing health issues with a doctor can ease your mind so that you have an idea if the situation is to be expected as part of the disease progression.
  5. Try to lift your mood if you begin to feel that worry is zapping you further. What can you do to make your life more pleasant?
  6. What early messages did you get about your capabilities? Give up the belief that worry will be the solution to the problem.
  7. Before your worries begin to overwhelm you, seek professional help.

Caregivers need all the physical, mental, and creative energies that they can muster. Save your energy for productive things, and try not to let worry drain you. Give yourself credit for challenges that you have overcome in the past. Have confidence in your ability to deal with the challenges that await you.

Get a good rest each evening in the knowledge that you did the best you could that day as a caregiver and you won’t need those worry dolls. Poet Ralph Waldo Emerson has these words of wisdom:

“Finish each day and be done with it,

you have done what you could.

Some blunders and absurdities no doubt crept in.

Forget them as soon as you can.

Tomorrow is a new day,

you shall begin it well and serenely.”

I wish you peace, patience, serenity, and joy in your caregiving today and every day!

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The Center for Clinical Interventions in Perth, Australia, has an educational module about “What? Me Worry?,”  an excellent detailed overview about worrying. Check it out here: http://www.cci.health.wa.gov.au/docs/GAD_2_2015_Worry.pdf.

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I composed a prayer based on a line from Psalm 40, to help alleviate worries. Check it out on the “Resource” section of my website: https://caregiverfamilies.com/inspiration/.

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Eyes: A Reflection on our “Windows” to the World

The human senses are our contact to our environment. Perhaps the most important organs of sense are our eyes. An English proverb attests: “Eyes are the window of the soul.”  

Eyes: Our Windows to the World

Eyes: Our Windows to the World

In Part Two of my blog series on dementia and the senses, I focused on eyesight. Our eyes not only connect us with our surroundings, but help us maintain sharpness of our minds.

I often take my eyesight for granted. But the eyesight of persons with Alzheimer’s and dementia may change as the disease progresses. This will cause them to perceive and interpret their environment differently.

One of my favorite poets, Rumi, wrote, “Everything that is made beautiful and fair and lovely is made for the eye of one who sees.” With the following reflection, I hope to focus your awareness as a caregiver on seeing, appreciating, and “experiencing” objects in your daily life and surroundings. It was composed by my mentor and friend, Merle Stern.

Take a few moments to relax. Let your worries drift away as you dwell in appreciation of our remarkable sense of sight.

Find the time of day when you know that your life will be without distractions, not easily disturbed, and therefore an opportunity for reflection. Find a spot where you know there will not be any external intrusion. Take a comfortable position whether sitting or lying down.

After you have settled, focus your awareness on your breathing. Experience the movement of your breath as you quietly breathe in and out. Now feel your entire body in rhythm with your breathing.

With your eyes still open, scan your surroundings. Allow your eyes to settle on something to which you feel drawn. Depending where you are, it might be a flower, an arid landscape, a tree, an empty vase, a piece of furniture that you hope to refinish, a precious memento like a trophy, plaque, or favorite painting. september-20-vase-of-flowers-with-book-1329155_640

Become aware of what you are experiencing as your eyes settle on this object. What is your sight communicating to you? Even though you have seen this object before, somehow it is as if you are seeing it for the first time. Feel yourself drawn to connect to what you are seeing. Become aware of the feelings generated within you. Do you feel relaxed, serene, anxious, restless, or distracted by suddenly remembering you had something else to do?

Now engage in a dialogue in order to develop a relationship with your chosen object.  Formulate your own questions that specifically apply to that object. For example, had I chosen an empty vase, these are some of the questions I would pose:

  • I notice you do not have any flowers. Are you often without flowers?
  • Do you like having water and flowers in you?
  • How do you feel when you do not have any flowers?
  • Do you feel you are just on display?
  • Do you feel that there is a purpose to your existence? If so, what is it?
  • Are you here because you were given as a gift? Are you appreciated as a gift?
  • Do you have any favorite flowers, and if so what kind?
  • How do you feel when the flowers are gone?
  • How do you feel when the flowers have died but not removed, and the water emits an unpleasant smell?

After you have had all your questions answered, and you feel that you know your chosen object, take a moment and absorb what you are experiencing.

Now gently close your eyes. You are deliberately closing out light. Notice how your environment changes? Take a moment and absorb what you are experiencing. What is it that resonates with your being, e.g., the emptiness of the vase? What has awakened inside of you? How has the sight of the chosen object connected with what you are experiencing at this given moment in time? In the darkness you cannot see the object, but you know it is there. What are you experiencing? What is the difference between seeing the object in light, and knowing it is there in the darkness even though you cannot see it?

When you are ready, gently open your eyes and come back to the room.

What is the value of this experience for you? How can you be more sensitive to your loved one’s changing perception of their environment? Take a few minutes to write your reflections in your journal.

I wish you peace, patience, and joy in your caregiving today and every day!

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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 is a unique version of the song, “What a Wonderful World,” sung by the English boys’ chorus, Libera. The lyrics describe seeing the bountiful beauties of this world: https://youtu.be/b4nmVhnGtDw.

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My younger sister Marcia and I recently published a journal called My Blessings Journal. MyBlessingsJournalIt can be a useful tool to introduce you to the joys of keeping a journal. You can order a copy through my website: CaregiverFamilies.com/book/.

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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/.

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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/.

Caregiving and Friendship

“Keep smilin’, keep shinin’, knowing you can always count on me, for sure. That’s what friends are for.”  These lyrics to the song, “That’s What Friends Are For,” were written in 1982 by Burt Bacharach and Carol Bayer Sager. When they composed that tune, it isn’t likely that they had caregiving of loved ones with dementia in mind. Yet, I think this song is very pertinent to the needs of caregivers.

Best Friends

Best Friends

Friends! We need them! Our loved ones need them! My parents taught me the old adage, “A friend in need is a friend indeed.” Friends are our lifelines.

Caregiving can get overwhelming at times, especially if caregivers don’t have regular breaks from their responsibilities. We all need the deep human bonds of friendship to give us strength, encouragement, and respite from the stresses of life. Isolation is a danger that creeps into the lives of families, particularly at a time when care partners need the most support. As the disease progresses, lifetime friends seem to fade away.

 

Many times caregivers don’t have the emotional energy to reach out to our family or friends when we need a break from caring. Or we may assume that friends and family should “know enough” to lend a helping hand or a listening ear. When they don’t come through for us, we become disappointed and alone in our caring. The cycle can become a vicious one to the detriment of our health.

It may seem easier to give up on friends or family members when they don’t come to our “rescue,” but it’s important to keep in contact with them. I made sure I wrote periodic e-mails and made regular phone calls to long-distance family members to keep them abreast of Mom’s condition, especially after she had a doctor visit, or an unusual incident. I wanted to give them a sense of what Alzheimer’s disease was like. We can be our own worst enemies if we suffer in silence. We also need to give others a chance to lend a helping hand.

If you are afraid to leave your loved one with a friend or family member, especially if they haven’t been around in awhile, brief them before hand on what to expect. Also, try to prepare your loved one in advance of the visit, as much as is possible.

The Alzheimer’s Association (AA) has a handout of ways for friends to help a family living with Alzheimer’s. You may want to send this post on to your friends and family, saying you would be grateful if they read this. Here are a few of the tips and ideas the AA offers to friends of caregivers:

  • Stay in touch – show you care. It doesn’t have to be expensive or take a lot of time, but a card, a phone call, or a short visit can really break up the long day for the caregiver.
  • Do the little things. Ask if you can run an errand, pick up an item from the grocery store, bring over a dinner or dessert.
  • Be specific when offering help. Ask your friend what they have on their “to do” list. Perhaps it’s mowing the grass, dropping off dry cleaning, mailing a package, shoveling snow, etc.
  • Include everyone in activities. Plan a coffee hour, lunch, afternoon tea, or picnic at your place. Have the caregiver friend bring their loved one.
  • Be a good listener. Try not to judge, but give support. Just allowing your friend to vent or share their experiences is a gift.
  • Treat the person with dementia with respect and dignity. They may not remember who you are, but just enjoying simple things, like a card game, a game of golf, working a puzzle, or listening to music together can help brighten their day.
  • Educate yourself about Alzheimer’s. You may hesitate to offer assistance, worrying that you’ll say or do the wrong thing. The person with dementia will likely welcome your contact because they worry that they are a burden to their caregiver.
  • Allow the caregiver some personal respite time. Even giving an hour or so of your time once a week can make all the difference to a caregiver. It allows them to take care of their personal needs while you stay with their loved one.   

I am Facebook “friends” with a compassionate pastor, Rev. Richard Goodwill. I worked with him for several years on staff at an international relief agency before I retired. In a recent posting, he wrote, “Friends guide us, care for us, confront us in love, console us in times of pain. Friends are free gifts from God.”  Even the early Roman philosopher, Marcus Tullius Cicero, understood the significance of friends in his writing, “Friendship improves happiness, and abates misery, by doubling our joys, and dividing our griefs.”

I pray that each caregiver has family and friends that come to their aid in times of need. I wish you friendship, peace, and joy in your caregiving today and everyday!

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To hear the song, “That’s What Friends Are For,” go to: https://youtu.be/uqlhBI3ES1s

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Caring for an older adult with Alzheimer’s or dementia can be an isolating experience. But knowing that a larger caregiving community exists helps you feel less alone. The real stories shared in this film shows that there are many people who are facing similar challenges and fears. This 48-minute HBO video is part of “The Alzheimer’s Caregivers Project.” http://www.hbo.com/alzheimers/caregivers.html.

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Create a “Help Calendar” where you can post requests for support from family and friends, like meals, rides to medical appointment, and visits. Check out this website and app:  http://lotsahelpinghands.com/.

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Try this fifteen-minute exercise, “How Would You Treat a Friend?:” http://ggia.berkeley.edu/practice/how_would_you_treat_a_friend.

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Here are additional recommendations from the Alzheimer’s Association how to help family and friends adjust to the disease: http://www.alz.org/i-have-alz/helping-friends-and-family.asp#friends.

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Did you like this blog article? If so, please share it with your friends and family. Also “like” us on Facebook: https://www.facebook.com/CaregiverFamilies/. Thank you!

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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Did you like this article? If so, please share it and “like” us on Facebook: https://www.facebook.com/CaregiverFamilies/. Thank you!

 

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!

 *  *  *

 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!

*  *  *

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.

You Are a Gift!

Traditions and memories are part of the joy and glory of living. Perhaps that is the reason we find ourselves trying to recapture them years later.

Sharing the oplatek

Sharing the oplatek

In my family, Christmas was a time for celebrating many Polish customs, like the sharing of the oplatek, a wafer, greeting one another around the dinner table with a wish for health, happiness and good fortune. Another custom was waiting for the first evening star before beginning the Christmas Eve dinner. It was saving a little bit of each entrée on our plate to give to the birds and animals. We sang carols around the crèche, and attended Midnight Mass. Come to think of it, I don’t remember many of the gifts I received as a child. But the warm memories of love and joy with family are the ones that remain with me to this day.

This time of year can be stressful for caregivers and family members. It is common to experience a sense of loss for the way things used to be. It is also easy to slip into a guilt trip about what you think you should do or how you should feel.

Caregiving is a tough job! It isn’t realistic to expect that you will have the time or the energy to participate in all the holiday activities that you once did.  You can still find meaning and joy for you and your family. Here are a few suggestions to help relieve some of the stress and to build new memories.

First, adjust your expectations and set realistic manageable ones. You know best the level of functioning your loved one is at, so determine what will be most meaningful to you and your loved one. Think about what traditions and activities you will truly enjoy. Trust your instincts. Resist the pressure to celebrate in the ways others might expect you to.

Second, communicate early with family members and friends by preparing them for what to expect. Update them on the status of your loved one’s health. You can do this by a telephone conference call to discuss the celebration, or by letter, e-mail, or Skype. Delegate tasks. You don’t have to do it all. Perhaps this year plan a potluck where everyone brings their favorite dish, or let someone else host the dinner.

Third, try to plan for a slow-paced and somewhat “quiet” gathering or small get-togethers. A calm and quiet environment is usually best for a person who has Alzheimer’s. Hold it in the most familiar setting. If you host it at your home, try to keep daily routines in place. If your loved one lives in a facility, participate in the activities planned for the residents.

Fourth, make preparations together. Let your loved one help you bake, wrap presents, or open holiday cards together. Tone down your decorations, as blinking lights and large displays can cause disorientation. Plan for one of your children, a relative, or a friend to stay with your loved one while you do holiday shopping or attend a holiday party.

Fifth, schedule visits when it is the best time of day for your loved one to enjoy the company. You might suggest that a few family members come on the holiday eve, while others come on the holiday itself. Children add joy to the holidays. Involve youngsters by preparing them for no loud crying or screaming.

Lastly, remind yourself that the true spirit of the holiday is LOVE! Think about what your loved one’s life would be like if you were not there to do what you do. You are a gift, not just at the holiday season, but year round! There is a wonderful expression: “To the world you are one person, but to one person you are the world.”  Take care of your needs during this season. Caring for yourself is not being selfish. It’s being wise and selfless.

May peace and happiness brighten your holidays and remain with you throughout the coming new year!  From my family to yours, as we say in Polish, “Wesolych Swiat Bozego Narodzenia!”

You are a gift!

You are a gift!

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A Holiday Carol

Lately in the news, there seems to be little in the world that is calm, merry, or holy. To help celebrate the season and remind us that there is hope and beauty all around, here is a favorite Christmas carol of mine. It is a version of “Silent Night,” sung by Placido Domingo, with the Cathedral School Choristers, and accompanied by The Piano Guys.

http://thepianoguys.com/portfolio/silent-night-feat-placido-domingo/

 

 

 

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!

* * *
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!

* * *
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.