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Caregiver Collective: Not Another Article About Burnout

Originally published at: https://www.caregivercollective.us/blog/caregiver-burnout

How many countless articles on caregiver burnout don’t acknowledge how impossible caregiving can seem? (Too many!) We promise that this is not going to be one of them.

We’re going to guess you’ve heard about the benefits of moving the body to relieve stress, deep breathing, connecting with others, creative outlets, and faith to prevent burnout. By now, it’s likely you know all the burnout prescriptions. 

Most caregivers are willing to do this self-care. But, honestly, the obstacles between caregiving and self-care are often insurmountable and unfathomable to others.

Intention

We reflect on when we were caregivers for our mom. How our mom – someone with ALS – lost her physical abilities and became in a sense trapped in her body, yet she developed resilience and a mindset that was freeing.

She acknowledged she had control over her thoughts. She could choose to wake up in the morning to go for it despite her circumstances and not knowing how things are going to develop and play out over time. She approached finding joy intently. There was a vast amount of suffering, both physically and emotionally, but still, she trusted that each day had possibility. 

It’s kind of radical to say that when you’re in the depths of burnout, it’s possible to still find moments of joy.

For caregivers, this is possible too.

The Superpower To Soothe Burnout

The best approach for caregivers is deciding to respond to situations in empowering ways and to skillfully process thoughts and emotions. Developing this superpower soothes burnout, and here’s how to do it:

First, we must drop any hang-ups or resistance we have to accept that we need to do this inner work of attending to our mental and emotional wellbeing to survive being a caregiver. 

Secondly, caregivers fundamentally need acknowledgment – by ourselves and others – that our experience is super hard. We need to express these frustrations, and we want people to relate to and connect with. 

Mindfulness For Caregivers

When caregivers acknowledge that this is really hard it often brings up painful thoughts and emotions we have not faced. We may realize – okay, that exists – and yet, we don’t have to let it prevent us from taking care of ourselves, connecting with others, or keeping our hope. 

This is a kind of mindfulness that we don’t have to add to our schedules. It’s a habit change and shift in mindset. Incorporating mindful awareness like this is an incredible tool a caregiver can use to respond to difficult situations developing resilience to continue on.

Breaking The Surface

Caregiving can feel like trying to survive in a dark huge body of water. People are shouting at you to get on the life raft, but you cannot figure out how to even break the surface. 

Acknowledging difficult emotions and unhelpful patterns that weigh you down can help you rise to the surface and climb on the raft. 

Once we’re on the raft, we can regain strength and perspective. We can build new tools, survey the horizon in a different way (perception is everything). We grow empowered in our ability to navigate rough waters.

We know that it seems tough to be this type of confident seafarer. Remember all the times we’ve survived, though. Remember that actually, multiple times throughout a day caregiving provides countless tales of resilience and survival. 

Untraditional Self-Care

As promised, we will never suggest caregiver burnout can be solved by slapping a little traditional self-care on it. What we do know is that caregivers develop resilience that eases burnout through inner work and learning deeper self-care tools. 

Do you find yourself facing caregiver burnout? If so, we invite you to check out the Caregiver Collective, a space where we’ll share with you practical tips & tools to make life as a caregiver easier, where you’ll gain more confidence & joy in your caregiving role, and avoid caregiver overwhelm & burnout.

Visit our website to learn more: https://www.caregivercollective.us

Caregiver Collective co-founders, Laura, an occupational therapist, and Cassandra, mindfulness teacher and wellbeing coach, have joined forces to answer the call to help women on their journey as caregivers, providing the support, resources and community that they wish they’d had, and know that women caregivers need. They show caregivers, through their personal experience and professional work as an occupational therapist working with caregivers and their loved ones every day and mindfulness teacher, wellbeing coach and mother, how they made the switch to being able to skillfully navigate difficult emotions, implement practical caregiver tools, and feel happy again about answering the call to be a caregiver.

Website: www.caregivercollective.us

Instagram: @caregivercollective

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Caregiving Community

Movies We’re Loving

Movies can be a great escape, or they can help us see ourselves and know we’re not alone in our journey. In no particular order, here are some movies that enlightened us, showed us the full spectrum of caregiving and made us feel more connected. Great for a rainy day or cozy evening at home!
The Father

A man refuses all assistance from his daughter as he ages. As he tries to make sense of his changing circumstances, he begins to doubt his loved ones, his own mind and even the fabric of his reality.

Supernova

Sam and Tusker are traveling across England in their old RV to visit friends, family and places from their past. Since Tusker was diagnosed with dementia two years ago, their time together is the most important thing they have.

The Upside

A comedic look at the relationship between a wealthy man with quadriplegia and an unemployed man with a criminal record who's hired to help him.

Beginners

A young man is rocked by two announcements from his elderly father: that he has terminal cancer and that he has a young male lover.

The Savages

A sister and brother face the realities of familial responsibility as they begin to care for their ailing father.

Amour

Georges and Anne are an octogenarian couple. They are cultivated, retired music teachers. Their daughter, also a musician, lives in Britain with her family. One day, Anne has a stroke, and the couple's bond of love is severely tested.

Still Alice

A linguistics professor and her family find their bonds tested when she is diagnosed with Alzheimer's Disease.

The Fundamentals of Caring

A man suffering a family loss enrolls in a class about caregiving that changes his perspective on life.

Me Before You

A girl in a small town forms an unlikely bond with a recently-paralyzed man she's taking care of.

Crip Camp

Down the road from Woodstock, a revolution blossomed at a ramshackle summer camp for teenagers with disabilities, transforming their lives and igniting a landmark movement.

It's Not a Burden

The humor and heartache of raising elderly parents

Sky Blossom

An inspiring film about today's students taking care of family with disabilities across America.

Caregiver: A Love Story

The tale of one man struggling to care for his dying wife. This film highlights an essential, yet largely unseen workforce—the family caregivers of America, and challenges viewers to acknowledge the growing strain placed on them.

CARE

A documentary. Care work is essential work. It's time for respect and a living wage.

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Caregiving Community

Hands Off the Popcorn

“Hands off the popcorn,” I urgently declared.

It was a favorite joke between us. “Hands off the popcorn” meant I was done for the day. No more taking kids to school, extra-curricular activities, dinner, the inevitable long process of putting our toddler to bed; her demands for one more glass of water, one more book, one more song. Making sure the teenager came home on time and did her homework. And always in the background, what it took to live with Joanne’s illness, her slowly deteriorating body.

Most days, we were joyful in a way I’d never experienced. She had insisted we wouldn’t do this alone and I had become accustomed over time to the steady stream of helpers. I had learned to say “thank you” instead of “are you sure you have time?” Somehow, without my even realizing it, I had learned to take care of myself, to answer the call for time or rest or just a simple five-minute break. I had learned to stay up to date with me.

But not on popcorn days. Those were the days someone cancelled, or a child was sick, or I hadn’t slept well. And, in her wisdom (or maybe simply her endless love for me) she didn’t take it personally; she simply smiled that knowing smile and waited for me to do whatever it was I needed to do until I was ready to carry on again with the rich and lovely life we’d created out of the rubble of her broken bones.

She reached out a hand, playfully feigning a steal of the kernels, poised above my bowl. She lingered over a particularly buttery bite, and I shooed her hand away, her fingers flies buzzing around my treat. I was going to eat the entire bowl. Myself. I was not going to share. And I was going to enjoy Every. Single. Morsel. Even if I was full.

Right from the start she set the stage for me to discover what it felt like when I needed a “selfish” moment.  “You’re not doing it all yourself. I need you to be my lover, my beloved. If you are busy doing everything you won’t have the time or energy for that. And you’re the only one who can do that!

I finished the last bite of popcorn, savoring the taste on my tongue. As we prepared to sleep, to start fresh the next day, that bowl of popcorn had been just what I needed. I had been my own priority, however briefly, and I felt better for it.

I reached over and took Joanne in my arms, ready to be generous with a goodnight hug and kiss. She answered my invitation with an enveloping set of arms taking me in, open to whatever I had to give. When I answered the deep call for my own attention, I had so much more to give!

Cheryl Espinosa Jones (CA MFT#27876) is a grief counselor, educator, writer, and the host of Good Grief, a weekly radio show investigating loss, grief, and transformation. Her novel, An Ocean Between Them, describes a mother-daughter relationship struggling to heal after a cancer diagnosis. The heart of Cheryl’s work stems from the 10 years she supported her wife while she lived with cancer and Cheryl’s immersion into her own grief after her wife’s death, surprised by frequent moments of joy.

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Caregiving Community

5 Questions with The Caregiver Coach, Benita Hampton

Benita Hampton, a Certified Dementia Practitioner and Caregiver Coach with a specialization in Aging & Dementia Education, is the founder and host of The Caregiver Coach podcast. During the span of her career, Benita has taught many workshops on the topics of aging and dementia, particularly, sundowning, dementia-related behavioral issues, and healthcare planning. Benita’s debut book, “Mama’s Got Dementia, Daddy’s Gone Crazy…and I’m Not Far Behind” is currently in the works and is scheduled for publishing by mid-next year. 

1. Who do you care for (now and/or in the past)? What is your role/relationship?

My mom and I cared for my grandma after she was diagnosed with dementia, over 20 years ago, and I credit that caregiver journey as the catalyst that pushed me forward to work in senior care, then become a caregiver coach. Back then, there was virtually no such thing as a coach or advocate in the caregiver support space and I watched the physical and emotional toll that caring for grandma took on my mom. It was then that I resolved to do all that I could to become a resource to others that found themselves thrust into their own caregiver journey. I also had the honor to care for both of my parents at the end of their lives, and I feel that the experience of caring for an aging parent just strengthened my resolve to support other caregivers.

2. When did you start to realize you were a caregiver?

When I am teaching a workshop I often ask the attendees to raise their hand if they ever looked into their parents’ eyes as a child and said, “I love you so much, I can’t wait until you grow old and can no longer care for yourself. I will find the best living accommodations for you when that time comes.” After 17 years of my career as a caregiver coach and an aging & dementia educator, I have yet to ever have an attendee or client say, “Yes! I’ve said that!” I think that caregiving is something that can just sneak up on you. It’s not always something that you plan for, and it’s certainly not something that you ever feel well prepared for. My personal caregiving journey is no exception. I did what so many other family caregivers have had to do, I saw that my loved one had a need and I just started providing care, while learning (through trial and error) along the way. It was something that just continued to evolve until one day I realized that I was a caregiver.

3. What helps you when you’re feeling overwhelmed by your caregiving responsibilities? What advice would you give to family caregivers in this situation?

I am very passionate about ensuring that caregivers create a plan of care for themselves. Whether you call it a respite care plan, an escape plan or something else, I believe that every caregiver needs to have this in place, and then make sure it’s followed. Every situation is different, maybe a family member can step in and provide regular breaks, maybe a professional caregiving agency can assist with providing care so that the caregiver can seek respite. Providing care for a loved one comes with a high risk of caregiver burnout, creating a respite plan of care for yourself will go a long way to help avoid the dangers of burnout.

4. What is the one thing you know now that you would tell new family caregivers?

In my coaching practice, we have a saying: “Stay Bendy” It’s how we remind ourselves and each other to stay flexible. The dynamics of caring for an aging loved one are constantly changing. What worked for you on Monday, might not work on Tuesday. Give yourself permission to stay flexible and breathe through the changes. 

5. How has caregiving changed you?

My caregiving journey has changed my life. Caring for my grandma, all those years ago, caused me to choose my career path and to serve in the caregiver support space. In the introduction to my podcast I talk about both the messy and the magical parts of being a caregiver to someone you love, and I believe that. Some days are messy, some days are magical, most days are hard. Caregiving has taught me flexibility, patience, gratitude and to celebrate the small victories. Caring for my parents taught me the importance of advocating for your loved one; to be brave enough to have conversations that matter; and that you can experience peace of mind that surpasses understanding when you know that you are carrying out your loved one’s wishes during their final days.  Caregiving is tough stuff, but you can still find joy in the journey, and it’s a journey that will change your life.

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Boundaries Before Burnout: Caring for Yourself in the Thick of Caregiving

When my husband—debilitated, immunocompromised, blind, and unable to walk—was discharged after a devastating bone marrow transplant, his doctor told me he couldn’t be left alone even for a minute. I’ll never forget my terror and outrage; I spluttered out something like, “I can’t do that! I have kids! I have to…sleep!”

I didn’t realize it then, but just by saying “I can’t,” I was setting a boundary in the face of an impossible demand. I wish I’d advocated for myself so clearly in the face of other expectations that were slightly less unreasonable than solo 24/7 care. I often let the intensity of my husband’s needs pull me into managing his care and its attendant paperwork, phone calls, and logistical demands for such long hours that I reached a stressed-out, exhausted breaking point.

From that experience, I learned how important it was to set boundaries before I got burned out. Setting limits can be one of the hardest things for dedicated caregivers to do—especially for women, as many of us are socialized to give of ourselves endlessly. Saying no or taking a break from caring can prompt guilt, and it’s tough both to find respite care and to trust others with a fragile loved one.

Training a consistent respite service, however, is an investment in future breaks that will protect your mental health and make long caregiving sustainable. In the case of my husband’s 24-hour care needs, we were fortunate that we could dip into savings and hire home attendants for a short time. Many community organizations offer respite care services (now becoming more available after COVID concerns halted them), and friends and family may also pitch in, especially if you make specific requests. However you find relief, drawing clear lines about how much you can handle is a crucial step in surviving your caregiving journey—and maybe even thriving in it.

Kate Washington is the author of Already Toast: Caregiving and Burnout In America (Beacon Press, 2021) and a speaker on the systemic challenges facing family caregivers. Her writing has appeared in The New York Times, TIME, Eater, Catapult, and many other publications. She holds a Ph.D. in Victorian literature from Stanford University and lives in Sacramento with her husband and two daughters. Connect with her at kawashington.com or on Twitter @washingtonkate

 

If you’re in need of respite care or services to support you in your caregiving responsibilities, here are some resources that may help:

ARCH National Respite Network

Eldercare Locator

National Adult Day Services Association

National Institute on Aging

 

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Caregiving Community

Spotlight on BJ Miller, President and Counselor at Mettle Health: “Difficult Aspects of Caregiving”

Originally published on Medium

There’s this thing where people call caregivers “angels” and such and that can be this over-hyped putting-people-on-a-pedestal thing is problematic in a lot of ways because we all need to be caregivers. Don’t immortalize someone for thinking or caring about another human being because we should all be doing that. It’s also mundane, hard work, it’s not heroism.

 

Checking yourself, introspection and self-awareness are a huge piece of doing this as well. Check in with your gut; are you helping or hurting this situation?

 

The Bodily Tasks of Caregiving

We are back to this idea that caregivers are “angels.” Well, they’re actually just human beings. You get to be grossed out, you get to not want to do it, and you also get to have help if you need it.

 

This is a big thing that keeps folks from really getting into caregiving, oftentimes it’s seeing someone else go through all this brings up their own fears about illness or death, so there can be a lot to process and a lot to work through.

 

We have to get over this idea that “normal” people are independent and invulnerable and only those poor pitiful sick people need help. We all need help, all the time and this is natural. This is normal.

 

But just because helping someone or needing help is natural and normal doesn’t mean it’s not also hard or disgusting sometimes. There is nothing wrong with being grossed out. The trick is to try to find a way to stay. If you can’t stay, maybe you just need to find a way to get help.

 

If you’re on the receiving end of caregiving, it can become a little demoralizing at some point. The times I’ve been a patient, it’s good for me when I know my friends, family, doctors, nurses, or anyone else is learning something or gaining something from my situation. So, look out for lessons learned and anything that can add enrichment to your own life to go along with the hard stuff.

 

You care for your person and you care for yourself and you care for the good of humans. I wish more people had this idea to just be a good neighbor.

 

There is an activism to caregiving. There can be some pride and a lot of importance in it too. Life can be incredibly unfair, right up until love comes in at the end in the form of caregiving. There’s a sense of justice until the end and can make sense of a life that would have otherwise been so hard.

 

For more from BJ, check out the video series The Mechanics of Caregiving with BJ Miller

 

Dr. BJ Miller is a longtime hospice & palliative medicine physician and educator who has worked in all settings of care: hospital, clinic, residential facility, and home. He has been profiled in The New York Times Magazine, and interviewed on Super Soul Sunday, The Tim Ferriss Show, On Being with Krista Tippett, and has spoken at the Aspen Ideas Festival and around the world. BJ’s latest project, Mettle Health, aims to provide personalized, holistic consultations for any patient, caregiver or clinician who need help navigating the practical, emotional and existential issues that come with serious illness and disability. He also co-authored the book, A Beginner’s Guide to the End, which was released in 2019.

 

Republished with permission of the copyright.

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Books We’re Loving

As many of us find ourselves in the unexpected role of caregiver, we turn to books to educate us, console us, and to remind us that we’re not on this journey alone. In no particular order, here are some staff picks that we’ve appreciated along the way.  

Already Toast

by Kate Washington

A Beginner’s Guide to the End

by BJ Miller, MD and Shoshana Berger

Toolkit for Caregivers

by Deidre Edwards

Lifted

by Roz Jones

The Unexpected Journey of Caring

by Donna Thomson and Zachary White

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Caregiving Community

Meet the CircleOf Team: Kerry Lange, COO & Chief Evangelist

CircleOf is an app designed for and by caregivers, so we wanted you to get to know the team beyond the technology. This week we meet Kerry Lange, who joined the team in July 2021 as COO and Chief Evangelist. 

Beginning in 2016, a series of seismic losses shook Kerry’s world and enlightened her to understand just how much support it can take – physical, emotional and pragmatic – to care for a loved one who is ill. The losses also transformed her life in other ways – from inspiring her to make a career change to getting permanent reminders of people she loved and lessons she’s learned.

 

CircleOf:  You suffered three major losses in a short period of time.Tell us about what happened.

Kerry:  My father died first of lung cancer in July of 2016. Shortly after that, my mom died of ovarian cancer on her birthday in January 2017. Then, my stepfather died of multiple myeloma in December 2017.

CircleOf:  Who did the caregiving for your family while they were ill?

Kerry:  My brother and I both lived in different states from our parents so we were lucky that my parents had family nearby. My aunts and uncles on both sides of the family helped out quite a bit.

My stepmom was the primary caregiver for my dad. My Mom and stepfather cared for each other while they could, but they were sick at the same time so my aunts nearby helped quite a bit. I would visit when I could, sometimes going to the doctor with them, and I was able to spend the last month of my Mom’s life living with them.

It was complicated because my stepfather had a bone marrow transplant shortly before my mom died, which meant he had to be in quarantine in a separate part of the house. His granddaughter came in to take care of him.

Multiple family members were there and helped make food and just tried to manage the day-to-day things that came up. There were church people who came by and brought meals and helped out too.

CircleOf:  What kind of help do you wish your family had that you didn’t have?

Kerry:  We were lucky that there were retired family members nearby who had the time and ability to help so my brother and I didn’t have to disrupt our lives to be there all the time. I recognize that not everybody has that, and not everybody can afford to take time off and go to doctor’s appointments with someone who is ill.

It would have been so helpful for us to have had a centralized place to track and communicate the status of where things were, what was being taken care of, and what we needed, and just emotionally connect with people in our inner circle and community, instead of the hodge-podge way of doing things. I remember sitting with my stepfather and his spreadsheet of medications – wow, it was a lot to manage! 

CircleOf:  How do you find that sharing lessons learned about caregiving is valuable for others?  

Kerry:  Most of my friends haven’t lost parents yet, but I’ve been able to share some of my experiences with those who have recently, and I think it’s helped them a lot. My grandmother recently passed away, and my stepmom and uncles all learned a lot from taking care of my dad, and that helped when it came to caring for my grandmother. I think we can learn with each experience and that information can help us get better at caregiving. Sharing those experiences with others can make it faster and easier for them to learn from us.

CircleOf:  How did all of this affect you professionally – in your career?

Kerry:  I had been doing freelance work in the agency world, and the death of my parents made me realize that I wanted to have more purpose in my life. The next year I joined Reimagine, a nonprofit that helps to break down taboos about how we face and talk about death and dying.

I joined CircleOf this year because I saw the caregiving experiences that my family went through, and I realized that not everybody has family nearby. I thought if I could help someone be able to be more present and available for their loved ones – less worried about how they were going to get things done – I wanted to help people have that.

CircleOf:  What are some of the other ways this experience transformed you?

Kerry:  Well, my mom wouldn’t love it, but I have three tattoos that are visible reminders, not only of the experience itself, but of what I carry forward from it.

I have a compass tattoo on my right wrist for my father because he inspired me to travel, and explore, and be curious. My stepsister and I got our tattoos on the Father’s Day after he died.

I have an owl tattoo for my mom. There was an owl that lived in her backyard, and I would go and chat with it every time I visited. I had a conversation with it the morning that my mom died – it was a beautiful connection. It left shortly after that – it just flew away and never came back.

The third one says, “This too shall pass.” I got that a few years later to remind me that when life is really hard, that this is going to change. Also, when things are going really well, things are going to change. It’s a reminder to me to just be present and that life is ever changing.

In more of an internal way, my experiences around death and caregiving helped me recognize that I can’t control everything, and to be comfortable with things unfolding naturally, and with vulnerability — it really tapped into a vulnerable space inside me where I realized I could show that I was hurting and didn’t have to have it all under control, it was okay to ask for help and let people in.Tough lesson to learn, but totally worth it.

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Caregiving Community

8 Tips for First-Time Caregivers

You just became a caregiver.  NOW WHAT?

Often, this transition comes with no advance notice.  As you are leaving the hospital, the discharge planner says your loved one can no longer live independently. Suddenly, you are a caregiver. I often say, women have nine months to plan for motherhood, and nine seconds to plan for caregiving! 

If you provide any assistance to a loved one limited by illness or disability, you are a caregiver. Are you providing transportation to medical appointments?  Helping pay bills? I know. You say you are “just doing what you should do for someone you love.” However, if you are providing even one type of assistance, you are a caregiver. Most caregivers take on many roles beyond these. 

Here are eight simple tips to make this transition a little easier for you and your loved one. 

  1. Find the resources available to you. You are not alone. Many organizations now assist caregivers, as well as provide respite relief. Find the resources and support groups available to you. Start with your local community. Go online. You’ll find lots of assistance.  The “Circle Of” caregiving app is an excellent first stop. (https://circleof.com/)
  2. Develop your own self-care plan.  Include rest, a healthy diet, and at least a little daily exercise. You will need the strength! Do not neglect your own doctor’s appointments. Your health is important, too.
  3. Each day, do something you love, even if it’s for only 30 minutes. Is it reading? Gardening? Chatting with friends? Continuing these activities helps you keep your own sense of identity. Don’t “lose yourself” while caring for your loved one. I’ve sadly heard many people say, “I don’t know who I am now that I’m no longer a caregiver.” Don’t let this be you. You want to come out of this role physically and emotionally well. Maintaining your friendships is also important. Re-connecting can be difficult after a long absence. 
  4. Allow yourself plenty of grace.  You will make mistakes. It’s OK.  Admit it. Tell your loved one you goofed. 
  5. Give yourself permission to say no. You can’t do everything all the time.
  6. Keep the lines of communication open with your loved one. Let them know what you need. Remember, this is a transition for them too.
  7. If you are struggling, seek help. Being a caregiver is Very Emotional.  It’s very difficult watching your loved one decline.  Sadness, guilt, anger and resentment are not uncommon. Confide in a friend. Talk with other caregivers. Seek counseling or a support group. 
  8. Don’t forget that you are still a daughter, sibling, spouse, etc. Spend time just being with your loved one, enjoying this relationship. Don’t lose sight of it. You will have sweet memories to reflect on later. 

You may be in this caregiving role for a long time.  Things will change.  You will become more confident and comfortable. You may have good days and bad days, but it will get easier. REMEMBER: you must take care of yourself so that you can continue to take care of your loved one.

For more from Toula, check out her book “Love Stories and Timeless Tips.”

​​Toula Wootan is a dynamic pioneer, dedicated to the mission of “caring for the caregiver” in Northeast Florida and nationally. In 2008 she founded the Caregiver Coalition of Northeast Florida. The mission of the Caregiver Coalition is to collectively elevate caregiving and improve the quality of life for caregivers in Northeast Florida. The motto is “You are not alone!” Toula was also the primary caregiver for her parents for five years. Since 2010, Toula’s weekly radio show, “Toula’s Tips for Caregivers” has offered advice to caregivers. Her mission is to be the voice of the caregiver, while offering resources and assistance to those who call in. Her guests include caregivers, respected national speakers and authors, business professionals, managers of local, state and federal programs and spiritual leaders who educate and entertain her audiences. Her show is on I-Heart, several other digital platforms and her site       http://www.toulastipsforcaregivers.com/

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Caregiving Community

Excerpt from: “The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver” by Donna Thomson and Zachary White, PhD

Reprinted with permission of the copyright

A new caregiver will have many, many questions, but there are a few that are vital to ask in the early days: “Can I do this alone?” “Who will help me?” At first, identifying one friend or key ally who will promise to make personal support a priority will be a big first step toward positive action and healing in the caregiving family. Building a coordinated team of support will come later, but at first, securing a commitment of abiding friendship from a single support person is enough.

As days, weeks, and years pass, the caregiver is slowly transformed.

If the need for care grows incrementally, it may seem that at first, each helping task is perfectly doable. But taken together and over time, the burden of care may become overwhelming. This is especially true in the case of degenerative disease combined with the caregiver’s own aging and life or work responsibilities.

To survive long-term caring, a rearrangement of priorities is required, a coming to grips, a reconciliation of personal goals, a “settling in” to care. But sometimes there are natural barriers to making peace with caregiving. Caregivers may engage in a battle of priorities, culminating in making enemies of both work and home. They may crave multiple social connections and the consoling “noise” of an independent and bustling working life.

Does being “settled in” to a caring role represent liberation or captivity?

Being in the right place, doing the right thing is natural for young parents caring for their children. But what of an older parent caring for an adult child with disabilities? What about the kind of parental care that feels like a role reversal in the case of Alzheimer’s? At the start of a care journey, a caregiver might strive to finish caring tasks quickly in order to return to “normal” life. 

But with the passing of weeks and months spent in an intimate relationship with a loved one who is ill or infirm, time shifts, and the disorientation of the caregiver role is injected with routine that temporarily silences the chaos. Yet, amid the routine, ongoing tensions emerge that mark the caregiver role as infused with contradictory needs and desires.

On the one hand, a caregiver may stop wishing to be somewhere else. Being alone with a loved one can morph into a natural way to be. Then, a caregiver notices that the slowness and quiet of caring is in itself a presence, not an absence. Settling for the reduced ambitions of caring for a loved one opens a door to a life rich with humanity and meaning, but also a life that is difficult to explain to others—a life others say they admire but stop short of walking toward out of fear and misunderstanding.

Of course not everyone falls into a taxing but intimate rhythm of caring. If a loved one is suffering, the call to care can be a call to battle against pain and exhaustion. But in the absence of anguish, caring can become a quiet truce in a land that is foreign to most other people.

Here, there is the possibility of intimacy, of reflecting on hopes, dreams, and mortality. Here, there is the chance to be grateful for small joys and tender mercies. And with this enhanced connection, there is an unprecedented proximity to suffering, fear, grief, and doubt that few others know (or want to know). The true wisdom of caregiving lies in realizing that the meaning of care cannot be delayed until “it” is over because care changes us and our loved ones throughout the process. Caregivers can’t help but realize that their control of what happens is limited, but what they can affect is how they make sense of their experiences and how they use these stories to connect to others along the way. And even if these insights and wisdom are not present because home is too chaotic to experience stillness, caregivers will learn the meaning of forbearance—the essential ingredient in being able to proclaim with certainty, “I’m glad I stayed and did the right thing.” 

From The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver by Donna Thomson and Zachary White, PhD with a foreword by Judy Woodruff. Rowman & Littlefield, 2019

Donna Thomson is a caregiver, author and family partner in health research. She is the co-author (with Zachary White, PhD) of The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver and the author of The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving