Self-care for 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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A Reflection on the Language of Touch

A hug can provide solace. A gentle massage can soothe and calm. Holding hands can reassure. In short, “touch” can be a powerful “therapy” that comforts a loved one with dementia.

Study of Dante holding the hand of Love by Dante Gabriel Rossetti

Study of Dante holding the hand of Love by Dante Gabriel Rossetti

Some of my best memories in caring for my mother center around sitting together on the porch of the assisted living facility, without saying much, but just gently stroking her hands and seeing her smile.

I realize that not all family members feel comfortable about touching or hugging their relatives. There can even be issues rooted in a fear or stigma that touching a person with dementia will result in “catching” the disease.

If you are caring for a loved one in your home, caregiving might inevitably involve touching intimate areas, like changing incontinent pads or panties, toileting, or bathing a relative of the opposite sex. How do you become comfortable with the vital role that “touch” plays?

The first step is to reflect on the nature of touch as one of our most basic human needs, no matter age or physical or mental condition. The second step might be in confronting your own reservations about touch. For a person with dementia, the need to be comforted and reassured by the loving, gentle touch of a hand or hug can be life-affirming, decreasing their feelings of anxiety, fear, or loneliness.

The reflection below was composed by Merle Stern, to guide in a deeper understanding of the importance of the gift of “touch” in your caregiving role. In her own words, Merle notes: “I remember many years ago, as though it was yesterday. I took the two week old baby from the arms of her mother and held her close to my heart. The synchronization of the baby’s heart beat with my own heart beat was a memorable experience, and at that moment I became aware of the power of touch.”

Jan 21 baby hugged cropped-1345736_640

To begin that inward journey of processing your personal experiences, you will need to withdraw to your sanctuary – that quiet place within you and surrounding you. Then, gently close your eyes and focus your awareness on your breathing. Experience the space around you and become at one with it.

Now, try to think of touching as a language: a language that speaks to the innermost sense of who we are; a language that has the potential to convey the depth of a relationship. The person whom you touch, and their response to your touch, has the ability to create a bond, and to build bridges that transcend words and invisible barriers. It simultaneously penetrates two different worlds.  

Take a moment now to gently stroke your arm. Feel the softness of your skin as your touch communicates gentleness and tenderness. Note how you are giving and receiving at the same time. After a few moments, and through the medium of your touch, try to communicate different issues; for example approval, objection, or whatever comes to your mind. Become aware of how and what you are feeling simultaneously, both as the transmitter and receiver of that touch.

Focus again on your breathing. After a few moments scan over some of your life’s experiences, making notes in your journal as you go along:

  •  The touch that conveys your joy and well being;
  •  The touch that conveys your appreciation/gratitude for help given by a stranger;
  •  You have not seen a person for a long time and you reach out with a spontaneous hug – a hug that enhances your bonding and friendship that transcends time and distance;
  •  The way you touched a child who came to you for comfort and solace;
  •  The touch that expresses “welcome,” and one that expresses “goodbye;”
  •  The difference in touch when you stroke a kitten or dog, or other pet animal;
  •  The touch that conveys your compassion, empathy, and understanding.

 Jan 21 grandma enbraces child-577494_640

Again, scan over your life and become aware of your own personal “touch history,” making notes in your journal as you go along:

 Visualize yourself as a baby, reaching out to touch your mother’s breast or comforting your teddy bear;

  •  As a young child, the experiences of being touched by your mother, father, brothers, sisters, aunts, uncles, and grandparents;
  •  As an adolescent and as an adult;
  •  As a parent to your child;
  •  As an adult child to your parent;
  •  As a spouse to your spouse.

Now reflect on your touch as a caregiver. Become aware that as you touch that person’s body, you are also touching his or her life. You invoke long forgotten memories of what once was and no longer is.

Throughout your caregiving, your touch conveys a variety of messages. Some of these messages include: your loved one is important; they are lovable; they do not need to be afraid; you are present with them on their journey.

Now, reflect on the possibility that the last touch in this person’s life may come from your hands. What would you like this last touch to convey, as you bid goodbye to your loved one who is transitioning to another realm?

Finally, take a look at your hands – the hands that will convey what words cannot. Feel your appreciation for your hands and the blessed gift of touch. Make a note in your journal of the value of this experience and how it can continue to enrich your life.

 hands-holding-together

Our experiences of bonding often center on the sense of touch and communicate much more than words ever could. The British-American anthropologist Ashley Montagu sums it up in his 1971 landmark book, Touching: The Human Significance of the Skin: “Touch conveys fondness, security, closeness, warmth, concern, and encouragement, and makes [older persons] feel an increased sense of trust and well-being.

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

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Sincere thanks go to Merle Stern, my friend and mentor, who composed this reflection. Feel free to pass it on to family and friends, but please give credit to Merle and this website.

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Dave Otis, a licensed massage therapist, wrote easy directions for healthy self-massage exercises for hands, face, and neck. Check these out by going to: http://www.unh.edu/health-services/sites/unh.edu.health-services/files/media/PDF/Stress/SelfMassage.pdf.

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For a comprehensive article on “How Skilled Human Touch Can Transform Person-centered Dementia Care,” go here: https://www.nhqualitycampaign.org/files/Compassionate_Touch_White_Paper.pdf.

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My sister Marcia and I published a journal called My Blessings Journal. It can be a useful tool to introduce you to the joys of journal-keeping. To order a copy through my website click here: http://caregiverfamilies.com/book/.

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If you found this blog beneficial, please share it and “like” us on Facebook: https://www.facebook.com/CaregiverFamilies/. Sign up for my free newsletter that accompanies each new blog with extra tips and resources for my subscribers.

 

Smell, the Most Powerful Memory Trigger

Of our five senses, I believe the sense of smell is underrated and underappreciated. It has the power to evoke memories, imagination, old sentiments, and associations, some good, some not so good. Odors can cause our hearts to beat joyously, or contract with remembered grief and pain.

Relaxing in a lavender patch

Relaxing in a lavender patch

The sense of smell diminishes as we age. Persons in the early stages of Alzheimer’s disease may have subtle problems identifying odors. In fact, as I reported in an earlier blog article, a deteriorating sense of smell may even precede the onset of memory problems, and be a predictor of changes in the brain. We often think of Alzheimer’s as a disease of “memory for words and pictures.” However, it may also be a disease of “memory for sensory information” as well.

The focus of this article is to provide an opportunity to reflect, as family caregivers, on our amazing sense of smell. My mentor and friend, Merle Stern, composed the meditation below. As we pause to appreciate this powerful sense, we will come to a deeper awareness and better understanding of the need for compassion when our loved ones lose this unique sense. Hopefully, it will also help you feel more centered, particularly if it has been a tough day as a caregiver.

Merle shared with me that she remembers her mother telling her that when she went off to university, she was greatly missed. To soothe the void, her mother refrained from laundering Merle’s bed linen so that she could crawl occasionally into Merle’s bed and absorb the smell. Her mother found it soothing and comforting. Years later, when handed a crying baby, Merle took a page from her “mother’s book.”  She took a coat or sweater of the baby’s mother, placed it in her arms, and then took the baby who snuggled up, contented and happy, comforted by the smell of its mother.

With these thoughts in mind, please take a few minutes to find a quiet place and a comfortable position so that you can enter into this meditation without distraction.

Let yourself drift in time and space to a scent that ignites memories you wish to recall. The scent might be that of a person or a place (like a kitchen with a wood burning stove where everyone congregated around the table to share stories.) The scent might be from an object, such as a cup of freshly brewed morning coffee, your favorite perfume that you received as a gift from a loved one, or a special flower that grew in your family’s garden.

Breathe deeply with your eyes open. Imagine fusing yourself with the smell so that it is an extension of you and you are an extension of it. With each breath you inhale as you absorb the scent, you become an extension of it. When you exhale, the scent becomes an extension of you. You become the scent; the scent is your breath. You are recognized by this scent. It is in your pores, your body cells, in your blood, in your being.

Now gently close your eyes. Visualize in your mind’s eye the form your scent has taken. How do you see it? What is the color? Is there a luminous quality? What is the shape? Reach out and touch it, making contact with its shape and texture. It exudes an odor different from the one you chose. As you absorb its color, its luminous quality, its shape, texture, and smell, visualize this new form it now takes within you.

october-22-cup-of-coffee-photo-montage-488177_1280It emerges like a symphony and you can hear music playing, created from all the smells you love such as: chocolate, freshly baked homemade bread, lilacs, lavender, apples, coffee. This symphony of smells breathes new life into you. You revel in the radiance of the smell. You feel your body nourished by it. You wake up in the morning to this smell and fall asleep surrounded by this smell. You begin to feel renewed and ready to evaluate your life as a caregiver.

Take a few moments in quiet reflection. When you feel ready, open your eyes and come back to your surroundings, feeling revived and refreshed.

Spend a few minutes journaling about this experience. At times, we as caregivers might feel like we’re caught up in a whirlwind of emotions and thoughts. Ask yourself the following questions and write down your answers. That way you can come back from time to time and read what you’ve written to re-charge yourself:

  • What is missing in my life at this time? Is it solitude, communion with others, socialization, etc.?
  • How can I be more sensitive to the changing senses that my loved one may be experiencing because of the disease?
  • What can I do to enhance the quality of my life and that of my loved one?
  • What concrete plans will I make to incorporate these finding in my life?
  • Envisage your life emerging from this vantage point. What will it look like?

Our sense of smell is ten thousand times more sensitive than any of our other senses. May we come to appreciate this marvelous wonder of the human body! Helen Keller puts it so beautifully: “Smell is a potent wizard that transports you across thousands of miles and all the years you have lived.”

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

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Please feel free to pass on this reflection to family and friends, but please give credit to Merle Stern and this website. I’d love to get your reactions and feedback about the meditation. Just jot me a note in the comments section below.

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If you’d like information about “smell training,” I’d recommend you watch this ten-minute video by Chris Kelly who is affiliated with the Monell Chemical Senses Center: https://youtu.be/wtAkWHN2xhc.

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For an inside look at how a person with dementia experiences the sense of smell, please check out this blog, “Welcome to Dementialand:” https://welcometodementialand.wordpress.com/2016/09/19/what-you-smell-in-dementialand/.

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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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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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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/.

 

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!

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!