Caregiver Issues

Elder Care: The Dignity of Choice

Welcome to the fourth installment in a series of blog posts on The Eden Alternative Domains of Well-Being(TM). Read more about these domains by clicking HERE!

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My first job working with Elders was as “social services designee” in a nursing home in 1983. I learned many lessons from the Elders there, and many from older, wiser, and more experienced colleagues.

One lesson in particular is really burned into my memory.

I must have been in an Elder’s room with one of the nurses, or maybe we were out in the hallway. She took me aside and told me that even if the only decision a person living with frailty or dementia could make was how they wanted their toast cut, it was important to always offer choice.

She said it was about ensuring that a person has “autonomy,” necessary to preserving human dignity.

Wow.

It might sound like a small thing, but that lesson really made an impact on me.

Autonomy is one of the domains of well-being, as described by The Eden Alternative.  We have a human need to have choice, to know that we have some control over our lives.

Autumn Tree SunsetThroughout my career I’ve tried to tune in to how physical or cognitive changes might narrow our choices.

If our ability to drive safely is compromised, “taking away the car keys” can be painful and humiliating for Elders and family alike.

It can be a challenge to find the choice in that situation, when something so essential to our independence feels threatened.

How we talk about these difficult decisions can make all the difference. We need to think about how we recognize the need for autonomy, and then work to fulfill it.

In the case of making a different decision about transportation, we must offer as many choices as possible under the circumstances. In our community, we have a bus service for Elders, and also a volunteer driver program. Offering the Elder their preference won’t completely “fix” the loss of one’s own car, but at least it preserves the opportunity to choose for oneself from the possible options.

Autonomy also means that Elders, or the people who receive services from an organization or live in a community, should have a say in how they experience services, or in how their home is operated.

Does your local home care agency have Elders on the team that interviews applicants for staff positions?  Why-ever not!?!

We can also preserve choice by thinking about health care decision-making and choosing someone to speak for you when you cannot speak for yourself.  This is a powerful way to ensure your preferences are honored, your voice is heard.

I wrote about this a few years ago; you can check out my blog on planning for future health care by clicking HERE.

Person-directed care doesn’t mean that we can offer any and all choices, regardless of the consequences. It does mean we look at realistic parameters, confer with the person who is most affected by changes, and find ways to offer the dignity of choice.

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Do you have stories about how you’ve been able to preserve choice, even when options have become limited? This can be a tricky area, so sharing what’s worked in your circumstance can be extremely helpful to others!

Perhaps you’re struggling with this now. Please let us know what issues are challenging you, and we’ll invite the  community to share stories that may help!

Please share your thoughts in the comment section below.

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Lisa Kendall supports well-being in her work with Elders and their family members, as well as with professional care partners.  She is an Educator and Mentor for The Eden Alternative, and has a private counseling and consulting practice in Ithaca, NY.

You can reach Lisa at (607) 351-1313, or via email at crossroadscounseling@hotmail.com

Well-Being in Old Age: How Elders Grow

Welcome to the third installment in a series of blog posts on The Eden Alternative Domains of Well-Being(TM). You can read more about these domains by clicking HERE!

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In the Eden Alternative philosophy, we define care as “that which helps another to grow.”

It’s a powerful way to shift our understanding of relationships, and to broaden our traditional view of care, which tends to focus on problems, and on treatment of the body alone.

When I was asking someone recently about their “support system,” they named a few people they felt close to. Then I shared this definition of care and asked “who or what helps you grow,” and the person poured out a list of resources they hadn’t thought of before.

These are the people (or animal companions) on our care team, and it all sounds like a good and positive thing. Still, I sometimes strike a nerve when I talk with people about “growth.”

“What is growth? What does that word mean?”

Dr. Bill Thomas writes about the stage of life known as “Elderhood” in his book. “What are old people for? How Elders will save the world,” and posits that growth is a part of Elderhood, as it is part of all of life’s developmental stages.

We are so used to thinking about Elderhood as a stage of decline that we overlook the many ways we continue to grow.

OMA Art by L KendallSome of us struggle with the very idea of growth in the midst of decline, or see growth through the eyes of Adulthood, where we strive to improve our job skills, increase income, or strengthen and build muscle.

These kinds of growth may or may not happen in one’s Elderhood. And we’re so use to looking at the world through the eyes of adulthood, that we may need to broaden our ideas about what growth can mean.

I started thinking about growth in the last phase of life when I had the chance to work with several people who were dying, or who were family care partners with loved ones who were dying. It’s easy to be overwhelmed by sadness and be focused on loss in this instance, but I have seen amazing healing and growth occur, even at the death bed.

This kind of healing and growth is almost always about intangible qualities, such as increasing forgiveness, wisdom, peace, acceptance, love, relationships, or one’s relationship to the Divine.

Growth is possible for people who are living with cognitive challenges, such as dementia. As care partners, we can learn patience, kindness, and forgiveness, to name but a few.  Elders may learn to accept support, let go of painful memories, and learn to express themselves with more freedom and joy.

The art that accompanies this post was done by me during a workshop by the good people at Scripps Gerontological Institute.  Their program, “Opening Minds Through Art,” (or OMA), shows us how people living with dementia can create fabulous art when we shift how we think about art itself.  Coloring between the lines may be difficult when you live with dementia, but watch the amazing transformation when Elders are given the tools and encouragement to create abstract art!  Check out this program at: www.scrippsoma.org

Have you seen someone grow in spiritual strength as their body is dying? Can you imagine growing in one’s ability to adapt to the changes brought about by aging or illness? Is there room for relationships to heal in our last stage of life?

What does growth mean to you? Who or what helps you grow?

Leave a comment about growth; you’ll be helping all of us grow in understanding!

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Lisa Kendall supports well-being in her work with Elders and their family care partners, as well as with professional care partners.  She is an Educator and Mentor for The Eden Alternative, and has a private counseling and consulting practice in Ithaca, NY.

Identity and Age

https://www.flickr.com/photos/thomasrstegelmann/1811854387/in/photolist-3L7ebK-pkc6tN-5uiz6E-64zny-5JGsnE-5P2CM3-5sQTMb-boxwhh-4FjTxT-4wkCAt-9d69qF-64zoC-38oyd9-xUiw1-4MRxcX-rkvyv-4km959-K3Y2U-K3YcW-9w9dKW-q8bgQV-4vdwk-64vP9z-2w6KQ9-4M5JNi-ABJEr-ehiBXD-5HDdD9-qXwhx-5hQGof-dSp8Ka-pQxH1b-5ZtHAE-51sFsv-7zkdyx-8KGRCA-rA7Bae-5JGshy-5JCbpZ-5Pqed4-qHyG6-oMiQei-4sMAYF-sGXftu-5rNCji-ncyBXt-hLEdup-8SoHfT-4wjQEe-8YV1Ln

Thomas R Stegelmann, courtesy of Flickr

Welcome to the second in an 8-part series of blog posts on The Eden Alternative Domains of Well-Being(TM). You can read more about these domains by clicking HERE!

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In 1984 I worked in an Adult Day Program that served people living with dementia, and also had a fair number of people attending who lived with Parkinson’s disease. One of the things that really jumped out at me at this time of my career was how differently our staff care partners thought about and interacted with the Elders, as opposed to how the family seemed to see them.

A woman I’ll call Helen had a beautiful smile and often struggled to get the right word out. I could usually get what she was trying to tell me by watching her gestures, and she sighed with relief when I offered the misplaced word.

Helen was always well-dressed, lipstick in place, and she carefully carried her purse on her arm. She had worked as an accountant in her career, and she enjoyed sitting behind the director’s desk. She looked completely at ease next to the large adding machine!

I loved Helen, appreciating her playful spirit, and the way she laughed when someone would dance with her. One day I had the ladies gather in a circle in the side yard and we tossed a Nerf football around. Helen placed her handbag carefully at her feet, and proceeded to have a great time with our silly game. No rules, just fun.

Helen’s family members were often tearful when they dropped Helen off at the program, and explained how hard it was for them to lose the “old Helen,” the mother and wife who had been so sharp in her work and careful in her dress. Now Helen couldn’t tell one end of a sweater from another, and needed help getting it turned right-way around.

Which identity was truly Helen?

Here is a place where we want to “embrace the power of ‘and,’” as Dr. Bill Thomas says in his book, “What are Old People for: How Elders will Save the World.”

A big part of Helen’s identity was about her past: her work, her relationships, her special skills and talents. Knowing her history helped us understand why she was so attracted to the big desk and its adding machine. AND a big part of Helen was the desire to connect she brought to the program every day: the painstaking conversation, the laughter, and the dancing.

I always honor the grieving process a family experiences when a loved one lives with dementia and the changes it brings, AND I am here to say that there is tremendous joy in seeing who the person is now, and getting to know them as they are, now.

Sometimes it felt like Helen and the other folks in the day program needed some time away from their dearest loved ones, where the sadness and frustration couldn’t help but reflect in their eyes. I believe they needed an environment where they could be accepted and loved for who they are now, and that can be easier for someone who is not a close relative or long-time friend.

We may be seen by the people around us in different ways, depending on the relationship and the context. It’s another way to understand how a care partner team can work together to both give and receive care from one another, and help us express the many facets of our identity!

How do you support identity for Elders who live with dementia? How about your own identity – are you able to do the things that connect with your innermost self, or have you pushed some part of yourself aside to cope with the challenges of caregiving? Please share your stories with our community in the comment spaces below.

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Lisa Kendall supports well-being in her work with Elders and their family care partners, as well as with professional care partners.  She is an Educator and Mentor for The Eden Alternative, and has a private counseling and consulting practice in Ithaca, NY.

How do you define “Well-Being” for Elders and Caregivers?

What does "well-being" mean to you? We often equate well-being with health, strength, and the vigor of youth. When these fade, whether through illness, injury, or advancing age, society sees us (and we may see ourselves) as unable to truly have well-being. Read the rest of this entry »

Do Caregivers Ever Get a Snow Day?

There is a storm coming, and I can feel the pressure in my temples.

People have been calling or texting to cancel their appointments, and while there have already been numerous accidents on our local roads, the “real” storm is expected to build slowly today and hit us hard overnight and into tomorrow.

I think we’re hard-wired to seek shelter when the weather is bad. For some of us, that “low pressure headache” is both warning and encouragement to get back into the safety and security of our bed to wait out the danger, or at least to hit the sofa.

In the movies, a storm usually marks some kind of change. In real life, it can feel like a call to action. Gather milk and toilet paper! Check the generator! Mount those studded snow tires!

Once our most basic needs are assured, we may use the storm as an excuse to take a break from the everyday busy-ness of life. There is a different feel to the world when it is muffled by several inches of snow. Businesses close, messy roads discourage travel, and we can postpone the mundane.

A snow day isn’t just for school children; we can all decide to stay in our jammies and watch old movies on TCM.Ravens on the Field

When you care for someone who lives with chronic illness, dementia, or frailty, there are some tasks that will have to be done no matter the conditions. Barring true Apocalypse, we have to have food, manage getting to and from the bathroom, take medications, and consider bathing and other personal care.

Is it possible for a care partner to enjoy a snow day?

Sometimes a shift in how we think about the day can make space for us to focus more on the moment, and less on the many tasks that always seem to clutter our to-do list.

A snow day can mean pulling out a game you enjoy, putting on some music, and generally loafing where and when you can. A snow day can be for “being” more than “doing.”

It’s natural! Embrace the snow day by slowing down, making some hot chocolate, and spending time with the person you care for. Accept some care today, and enjoy the blanket of winter.

How do you make a “snow day” special for yourself and your loved ones? What rituals bring you comfort and help you slow down at this time of year? Please share your thoughts with our community, and stay safe and warm!

 

Looking for Holiday Gift Ideas for Elders?

http://www.flickr.com/photos/uitdragerij/with/3130878949/

Lonely this Christmas by uitdragerij via flickr

Are you trying to figure out what gifts to get for an older family member, friend, or neighbor?

Ideally, we know the person well and can think of an item that builds a bridge from us to the recipient, reflecting who we are, how we’re connected to the Elder, and what is meaningful for them.

For example, framed photographs of family members may be welcomed, a sketch of the family home, or a DVD of a favorite movie. A thoughtful letter thanking the Elder for the ways they have enriched your life is sure to be appreciated.

When we don’t know someone, such as when we’re gifting Elders in our community through a charitable organization, home care agency, or faith community, try to talk with the person in charge of the event to find out what would be meaningful and appropriate. Chocolate covered cherries may be welcome, but could conflict with someone’s health regimen.

I live in the Northeastern United States and because it’s winter, I often think of items that create or signify warmth and comfort, such as fuzzy slippers, cozy blankets, a variety of hot teas, scarves, body lotion, pre-stamped postcards, notecards, flashlights (with batteries already installed), colored pencils (Crayola makes nice ones that are inexpensive), gloves/mittens, or warm socks.

The gift of your time and presence can be the best gift of all. Offering to stay with a person who lives with frailty while the primary caregiver takes a break would be appreciated by both the Elder and the care partner. Your local senior apartment complex, assisted living, or nursing home might welcome your help with holiday decorating, or you could volunteer to play games or read to folks who don’t usually have visitors. Even if you don’t play the piano, singing Christmas carols is a wonderful way to both give and receive care during the holidays.

What gifts have you found to be appreciated by the Elders in your life? Please share your ideas with our community, and have a warm and wonderful holiday season!

Lisa Kendall is a clinical gerontologist with a private counseling and consulting practice in Ithaca, NY. 

Check out Lisa’s report on “9 Essential Steps to Assembling Your Care Partner Team” at www.carepartnerconnection.com.

How Can Body Language Help Caregivers?

Picture a person who is feeling defeated.  How do they look?  What is their posture?

Chances are you imagined a person who was sort of “curled up,” with their shoulders bent and head down.  Maybe they even hold their arms crossed in front of them.

This is a very natural pose to take when we’re being attacked; it serves to protect our vital organs, and keeping our head down can protect our face and throat.

Now picture someone who is very strong and self-confident.  What do you see?

Are they standing tall, feet firmly planted?  Are their hands on their hips?  (Think Superman or Wonder Woman here).

Harvard researcher Amy Cuddy became very interested in body language and the ways people seem to express feeling powerful or powerless.  What she learned can help you with your caregiving.

Dr. Cuddy noticed that in nature, when an animal feels threatened, or even wants to intimidate another animal who’s too close to their home territory, they make themselves appear larger.  A fish might puff itself up to appear larger, a bird will spread its wings and get up on tip-toe, and a mammal tends to “ruff” the fur around its neck and may rear up to seem more capable of defending itself.

Conversely, many animals will make themselves small by curling up into a ball or trying to climb into a tiny space for safety.

In her lab, Dr. Cuddy learned that when humans “make themselves big” for as little as 2 minutes, their stress hormone, cortisol, gets lower.  Their testosterone, a hormone that can makes us strong and focused, was raised.  This brief change in posture altered how the brain and body responded, allowing the person to feel more calm and courageous.

People who assumed the smaller posture had hormonal changes, too, but in the opposite direction.  Those folks experienced an increase in cortisol, the stress hormone, and a decrease in testosterone.

Who is better prepared to deal with a problem, succeed in an interview, or stay calm in a time of trouble?

Dr. Cuddy advises that taking on a big posture, spreading our feet and arms, for 2 minutes before an important conversation can make us think more clearly and feel calm and more self-assured.

Notice your own posture at different times throughout the day.  When you notice yourself curling up, make an effort to spread out for a few minutes.  Even putting your feet up on a desk, leaning back, and putting your hands behind your head (with elbows out), is a way to make yourself appear larger that Dr. Cuddy calls “the CEO position.”

Is there a part of caregiving that “beats you up” or makes you feel powerless?  Try “being big” for a few minutes, and let us know through the comment board what you discover!

You can learn more about Dr. Cuddy’s research by watching her TedX talk at: http://youtu.be/Ks-_Mh1QhMc

 

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Lisa Kendall is a social worker and clinical gerontologist with a private therapy and consulting practice.  Specializing in aging and Elder care, trauma recovery, and bereavement, Lisa also teaches at the Ithaca College Gerontology Institute and is an Educator for The Eden Alternative™.

Accept the Gift

TrellisI don’t feel good today.  I’ve had a cold, and it’s getting old.  I’m into the coughing stage, and it gives me a headache.

On a day when I don’t see clients and there is nothing that HAS to get done other than a brief (and welcomed) meeting with some of my colleagues from The Eden Alternative™, you would think I could be grateful for the time to rest and recuperate.

Not me!  Like a dope I held onto the belief that I “should” be working, not resting.  This nagging guilt kept me at my computer, but the lingering cold prevented me from doing anything creative or constructive.

The result was that I didn’t get anything done, AND I didn’t rest, which was clearly what my body wanted, craved, and needed.

I’ve been trying to be better about this, but today I backslid big time.  I didn’t even realize it until I finally came outside to an unseasonably comfortable July day.  As I settled into an Adirondack chair, I could hear a whisper on the breeze, mingling with the gentle sound of my windchimes.

“Accept the gift.”

Accept the gift!

Accept rest.  Accept peace.  Accept the gift of a no-stress day to allow rejuvenation and renewal.

I might have let the day go, but I will embrace this cool summer evening. I will listen to the birds, watch the bunnies, and feel the breeze against my skin.  I will let my body relax and heal.

I will accept the gift.

 

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Lisa Kendall is a social work psychotherapist and clinical gerontologist who needs a nap more than she needs to go on about her work right now.  Thanks for reading, and if you’ve gotten this far, please feel free to share what you’re doing on this summer day to “accept the gift!”

 

 

Widening Circles of Support for Elders and their Care Partners

 

The rural community where my Mother grew up is saturated with extended family, and has been for several generations.  As a family history buff, I enjoy looking at the old Federal census forms and seeing the names of ancestors filling pages, neighbors living in houses strung along a country road or tucked into the mountains of Eastern Pennsylvania.

The big farmhouses of those times had a “sick room” off the kitchen, where an ill loved one could be looked after, close to the family’s heart and hearth.  With cousins, nieces and nephews, and sons and daughters all in the area, there was help to be had if and when it was needed.

Even so, it’s interesting to see that some Elders of very advanced years lived with unrelated folks as a “boarder.”

4fafe553-6123-4719-b6f9-00fdc24e92f1Nowadays our culture continues to see the “best” option for care of our Elders as that which is provided in their own homes, or living with close relatives.  Moving someone into a nursing home is seen by many as a personal and family failure.

This has always bothered me.  While we have a long way to go to change the institutional model of long term care, I do not agree that this represents failure.

I’ve seen many Elders blossom in nursing homes and assisted living.

One beautiful woman I knew came to live in the nursing home because arthritis had crippled her hands badly and left her unable to get around without a wheelchair.  Once she moved into the nursing home where I worked, she was able to explore her lifelong dream to be a painter.  The Activities staff provided her with supplies and a place to work, and she figured out a way to hold a brush in her gnarled fingers.  The art she made was glorious! (And she felt very happy to have finally liberated her inner artist!).

I’ve also known many Elders in their own or a family member’s home who nevertheless suffered from the three plagues of Loneliness, Helpless and Boredom, as defined by Dr. Bill Thomas and The Eden Alternative ™.

These families are likely to feel guilty when they “have to” place their loved one.

We’ve seen much change in recent years, with families moving far from the family home, medical technology extending life (but not necessarily well-being), and two-earner couples.  It’s no wonder family care partners feel overwhelmed!

I won’t rehash the demographics and statistics we all know so well, but I’d like to offer some thoughts from my years of experience working in long term care.

Don’t let “caretaking” overwhelm your relationship with the Elder.  There are lots of people who can mop the floors, wash the linens, assist with bathing, and help an Elder living with frailty get to the bathroom. No one can have the special family bond with the Elder that you do. You can look at family photos and reminisce about the milestone events and precious small moments that comprise your family’s unique culture and history.

If you are a spouse or partner, your loving presence is irreplaceable.

If you’re so overcome with the tasks of caring, to the point that the relationship is suffering, please reconsider. Build a care partner team for your Elder and for yourself that will honor your loved one’s preferences and still ensure their daily needs are met in a loving and respectful way.

Consider that the local nursing home is where our sons and daughters, nieces and nephews, are now working.  Let them help with the care.  You’ll find that some of these strangers will come to love your Elder and develop their own distinctive relationships with them.

You’ll also find that those young, strong backs can take on what feels burdensome, leaving you with the energy and resources to be present for your Elder in the way that only you can be.

 

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Lisa Kendall is a social work psychotherapist and clinical gerontologist, and amateur genealogist!

Please let us know your thoughts about Aging and Elderhood, and share your stories of how you’ve been able to widen the circles of support for your loved one and for yourself!

Changes at the Crossroads

Lisa PixlrI think I’m having growth spurt.

Before you check out my “middle-aged middle” and start giggling, let me say how grateful I am to have so many opportunities to learn and grow, professionally and personally.

(Now you can giggle!)

I continue to learn every day from my clients and colleagues, family and friends, and my “tribe” of followers on this blog and on my Facebook page, Lisa Kendall Counseling.

In the past year I’ve also taken advantage of some powerful professional development opportunities, including:

  • Webinar series on brain science, mindfulness, and meditation offered by the National Institute for the Clinical Application of Behavioral Medicine (NICABM).
  • An online course offered by NICABM to help mental health and other wellness professionals learn how to use technology to have a bigger impact and greater influence in the community.  I am now on LinkedIn and Twitter (@LisaKCounseling), and am working at getting up to speed (slowly) with both.  I’ve also created a second website to offer educational materials for all members of the Elder care partner team at www.carepartnerconnection.com.
  • My own team now includes a Virtual Assistant, (thank you, Darby Miller!), who makes it all possible.
  • Coaching with the Soul Guide, Dr. Pamela Moss helped me clarify my mission and purpose, and to let go of limiting thinking!
  • An online course on how to get my book published, with therapist, speaker, and author, Bill O’Hanlon. I’ve made an important shift from saying “Someday I’ll write a book” to “I’m writing a book!”
  • I’ve made new friends and expanded my network of like-minded colleagues, good and smart people committed to person-directed care and the importance of self-care for each of us.
  • I am studying “Eye Movement Desensitization and Reprocessing” (EMDR) with Andrew Seubert from Clear Path Healing Arts Center.  It’s an approach to healing trauma that is already making a difference in my clinical practice.

There are some big events coming up, too:

  • Next week I’m heading to the Eden Alternative’s International Conference in Nashville, TN.  Two years ago I was a speaker there, and I’m looking forward to the flow of being a participant.   More learning!  More friends!  More collaboration!
  • Later in May I’ll be at the first Care Management Summit at Binghamton University, speaking about “care partnership” and what it means to create a culture of meaningful care.

In the coming weeks I’ll post more about what I’m learning and applying, and invite you to join our conversation about how we can promote well-being for each of us, no matter what our age or role.

Thank you for being a part of this tribe (our own Care Partner Connection!); I would love to have you invite your friends and colleagues, too!

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Lisa Kendall is a social worker with certification in clinical gerontology and over 30 years’ experience in aging and Elder care.  Lisa has a private practice in Ithaca, NY, teaches for the Ithaca College Gerontology Institute, and serves on the Cornell University President’s Advisory Council for Work and Family Issues.

 As an Educator for The Eden Alternative, Lisa facilitates trainings around the country to improve the quality of life for Elders and their Care Partners, and is a popular speaker for both professional and family audiences.

 

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