Caregiver Support: Taking Time to Breathe

Why Self-Care is Critical to Your Well-Being

One of the biggest challenges faced by caregivers is the feeling of isolation and overwhelm. Many caregivers feel as if they should be able to do everything and do it well. Even allowing others to help can be tremendously difficult. When the demands of caregiving are too much, they often feel as if they are failing their loved one and even failing as a person. But asking for help is hard and too many family caregivers will suffer in silence instead of reaching out for help.

Then there’s the added problem that well-meaning friends and family may want to help, but are at a loss to truly understand how. For those who have never experienced the sometimes crushing demands of caregiving, knowing HOW to help can be a mystery. Add that to the fact that many caregivers may have trouble delegating or accepting help and you have a recipe for disaster. Caregivers become more resistant to accepting help and friends and family may stop offering when they are constantly rebuffed. It’s a perpetual cycle that leads to exhaustion, stress, depression, frustration, caregiver burnout, and overwhelm….Something that only someone who’s been there can truly understand.

Enter Cyndi Mariner. Mariner is the Founder of Breathing Spaces, Support Network for Family Caregivers. While Breathing Spaces is headquartered in the California Bay Area, they serve family caregivers globally in partnership with local businesses who want to help. Regardless of who they are caring for, members of Breathing Spaces support fellow caregivers through inspiration, information and helpful resources. This is done through weekly newsletters, Facebook postings (including articles from their partners), inspiration through shared quotes, and articles on their blog. They offer a closed Facebook group for private, peer-to-peer support and they provide helpful seminars done in association with their partners.

The Breathing Spaces philosophy is that family caregivers, regardless of their location or situation, need to be supported through Mindfulness, Nutrition and Movement and they offer services that encompass that. They’re dedicated to ensuring that no one ever feels alone on their caregiving journey, or afraid to speak out and ask for help. Additionally, they host weekly Caregiver walks (currently) in the Bay area. Each walk is sponsored by local business partners who want to offer their support to the Caregiver community.

The walks give family caregivers a place to connect with other caregivers and find the support that they are not likely to get in other places. It’s an opportunity to connect with others that ‘get it’, in an outdoor setting where they are able to do something good for themselves… share, compare, vent, cry. Just do whatever it is they need to fill themselves up for the hour long walk. Participants form valuable friendships within a community of fellow caregivers providing a valuable, much-needed support system for all. And Mariner knows just how important having a support system is to family caregivers is because she’s been in their shoes.

“I watched my Mom care for my Dad for a couple of painful years. A man that was very active with golf and home improvement projects after his working career became ill with circulatory issues and diabetes ultimately leading to an amputation. It was a downhill battle after that and a painful thing to watch.”

Like many family caregivers, Mariner has experienced the eventual loss of those she loved and cared for, saying “I will never forget near the end of his life sitting across from people from hospice. First off, what is hospice and what do you mean you want me to give my Dad morphine? It was a devastating time for so many reasons.”  

She continues, “After my Dad passed away, I moved in with Mom. At that point it was two ‘girlfriends’ living together. Mom and I got along well and certainly loved each other. But over time, I started noticing changes in her ability to do things, memory and some cognitive issues. Overall she was still very strong and mentally alert and active. But the toll that two trips to the hospital with pneumonia took were wearing on her. My brother, who had heart failure issues,  moved in with us as well so I became the caregiver for both. I spent my days running to doctors’ appointments, the pharmacy, planning and shopping for meals while keeping a watchful eye on Mom. Caregiving became my new way of life.”

Other caregivers will relate when she goes on to say “Watching my Mom’s eventual decline was heartbreaking and the role of shifting from just a daughter to a caregiver, difficult.” Reversing parent-child roles from child to caregiver puts a strain on the best of relationships, and Mariner’s was no different.

“Mom would put on a happy face when others were around yet Cyndi often felt she was in the position of being the ‘bossy’ one. She goes on, “At the same time, I have a vivid and heart-wrenching memory of my Mom sitting with her head held in her hands in tears towards the end of her life saying how much she knew I was doing and how hard it was for her to see me go through it. I tear up every time I think of that memory. It’s heartbreaking.”

While Mariner was caring for her Mom, she joined a group who had started walks for family caregivers….”Are you caring for a loved one?” She knew something had to shift emotionally and thought perhaps this was something that could help her during this very difficult time.  

“Once I began walking with the group I saw a bigger picture for the platform they had in place and asked them to let me take over the program. On a part-time basis and with a very limited budget through grant funding, I began to grow the program from one walk every few weeks to four. I begin blogging and hosting seminars and the positive impact it was making for family caregivers was significant. The grant funding for the program (targeted at family caregivers caring for seniors) fell through and as I hosted my last orientation for the program my Mom fell into her final moments of sleep. It was so hard for me to leave that night but I felt a pull that I needed to go. She was so proud as she glanced at me dressed in business attire knowing it was what I needed to do. The next morning she passed.”

Breathing Spaces is dedicated to the memory of Cyndi’s Mom, “and to the heart of myself and all family caregivers.” She continues, “We learned how to read and write, to walk, and to ride a bike, but never how to care for a loved one or watch them become ill and often times eventually pass away. It’s a journey that we have never been trained for and perhaps one of the most difficult times of our lives.”

Mariner believes she “landed in the position of being a family caregiver for a reason. I remember having a conversation saying ‘….you know you could leave, we’ll find alternatives..’ but I needed to stay. Not only did I love my Mom dearly, but I needed to understand and bring a platform into being that filled a void that was lacking. Through inspiration, information and resources, that is exactly what we are doing.” 

When asked if she has any words of wisdom for other family caregivers she replied, “Despite the important role they play, caregivers are under tremendous stress mentally and physically, so it’s easy to neglect their own needs. As a former family caregiver, I understand the reasons why. Days are full of tasks and emotions, fielding questions, and making difficult decisions. A friend’s well-intended suggestion to ‘take care of yourself’ can push a caregiver over the edge because the very idea of one more thing ‘to-do’ can be exhausting.” 

“When the needs of a caregiver aren’t addressed, the consequences can be severe, not only to the caregiver, but ultimately to their loved one. Don’t do this alone. Connections make a significant impact, regardless of how often you are able to do it. Just knowing someone else is there that you can reach out to will make a significant difference. Self-care is not selfish, it is imperative. Doing so allows you to better care for your loved one.” 

Reaffirming the importance of community and peer support, Cyndi shared some of the following comments from caregivers in the group:

“While every caregiving situation is different, the one thing we all need to know is that we are not alone.” 

“Thank you Cyndi, for the blog. Your program is so vital for all of us. Hearts to you!”  

“You have been a beacon of light when it seemed to be all darkness around me. I just wanted to tell you how much I appreciate this group….” 

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Caregivers or families that are interested in starting a Breathing Spaces Group near you can contact Cyndi via the following:

Website: https://www.breathingspacesfc.com/ 

Facebook: https://www.facebook.com/breathingspaces/ 

Connect with me on LinkedIn Personal: https://www.linkedin.com/in/cyndi-mariner-b444673/ 

LinkedIn Biz: https://www.linkedin.com/company/28177613/admin/ 

Instagram: Breathingspacesfamilycaregiver https://www.instagram.com/breathingspacesfamilycaregiver/ 

Twitter: @cyndibreathing https://twitter.com/cyndibreathing