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Compassion and Empathy are Caregiving Essentials

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

Footprints in the Snow

Footprints in the Snow

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

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

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

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

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

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

EXERCISE

(Adapted from a Reflection written by Merle Stern)

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

Let your mental state become calm and relaxed.

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

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

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

You have no memories from one moment to the other.

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

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

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

You do not know who you are.

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

You feel disconnected from everything and yourself.

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

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

Gradually phase out this experience…focusing on your breathing.

Gradually feel yourself moving into your own space.

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

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

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

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

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

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

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

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

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

Self-Care Is a Necessity

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

Fire

Fire

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

Here are some symptoms of caregiver stress:

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

Forest Fire

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

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

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

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

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

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

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

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

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

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

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

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

 

A New Year – A Healthier You

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

Aurora Borealis

Aurora Borealis

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

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

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

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

Saindak Copper & Gold Mine, Saindak, Balochistan

Saindak Copper & Gold Mine, Saindak, Balochistan

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

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

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

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

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

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

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

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

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

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

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

Giving Thanks for Family Caregivers

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

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

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

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

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A Litany in Thanksgiving for My Beloved Caregiver

My dearest one,

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

Mother and son holding hands

Mother and son holding hands

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

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

September Is World Alzheimer’s Month

Dear Family Caregiver,

I salute you! You are one in a million! Wait – NO – make that one in about 15.7 million in the  United States who provide support and care to those with Alzheimer’s and other dementias.

 World Alzheimer's Awareness Month


World Alzheimer’s Awareness Month

September is set aside as “World Alzheimer’s Month,” and September 21 as “World Alzheimer’s Day.” Alzheimer’s organizations around the world concentrate their public relations efforts this month to raise awareness and encourage a better understanding of Alzheimer’s and dementia. About forty to fifty percent of people living with the disease are never diagnosed.

I saw a Facebook “Minion Quote” (Despicable Me Minions.org) that said, “Sometime I just want someone to hug me and say, ‘I know it’s hard. You’re going to be okay. Here’s a coffee and five million dollars.’” Sorry, I don’t have coffee and money to give you, but I would like to give you a big hug through the internet! Thank you for your dedication, love, and compassionate care!

Hug Tokens

Hug Tokens

You and your loved one have first-hand experience what it’s like to live with the disease. The Alzheimer’s Association estimated that 17.9 billion hours of unpaid care were given last year by family and friends who support those diagnosed with the disease. About seventy-five percent of you provide this care at home. Oftentimes your efforts go unappreciated and unseen by family members and friends.

“We can ask ourselves daily what we have done to make the world a better place, to make someone smile, to help someone to feel more secure, etc. It’s the simple things which have the greatest effect. We must never underestimate the strength of a smile or act of kindness,” noted Dr. Leo Buscaglia, famous author, professor, and motivational speaker who passed away in 1998.

Thank you for your daily efforts to help make your corner of the world a better place for you and your loved ones! Thank you for your selfless and courageous love!

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To hear Dr. Leo Buscaglia talk about courageous love, a five minute segment of his “Speaking of Love” series, go to: https://youtu.be/0Tpsg0scod4.

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For more facts and figures, please check out the Alzheimer’s Association’s “Alzheimer’s Disease Caregivers Fact Sheet, March, 2015:  http://act.alz.org/site/DocServer/caregivers_fact_sheet.pdf?docID=3022

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For more information on World Alzheimer’s Month and World Alzheimer’s Day, please go to:  http://www.alz.co.uk/world-alzheimers-month

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For a 9.5 minute meditation on “Loving Kindness,” please go to: http://marc.ucla.edu/mpeg/05_Loving_Kindness_Meditation.mp3