A notion that often exists as an undercurrent in our lives rather than a main player. I’ve been thinking a great deal about passion lately, and in many of its contexts. The start of the year has been fast and furious for The Care Plan as an organization, and for myself as a caregiver to loved ones.
Every time I enter into the role of caregiver, I am immediately reconnected to my passion for this work. In particular I remember how vulnerable and tenuous the relationship between caregiver and care recipient can be to navigate, and how much it changes you. My caregiving this year started in January with assisting a loved one through a gender affirming surgery. We spent December talking about the importance of letting people in by working through the internal resistance to accept support. By January we had developed a plan and schedule. We asked friends to make meals and to stay with him for a few days, or a few hours. After the surgery I visited every night on my way home to provide emotional support and be sure the healing process was going smoothly.
Shortly after that, it was discovered that my mother would need to have a surgery caused due to a complication of her diabetes and arthritis. My mom has been suffering from these conditions for over fifteen years, so this places me in the midst of a very different type of caregiving experience. With no end in sight, witnessing her daily pain and discomfort, the multiple specialists and overwhelming amount of medication she takes to manage her health can be disheartening. Every time there is a surgery or any major change, I find myself holding my breath. I am filled with concern, anxiety, and the stress that every caregiver feels when the life of a loved one hangs in the balance.
However, my passion is not nearly as deep or enduring as my father’s. His love for my mother has spanned decades, they have been married for over 40 years. Their passion has changed vastly from the early years. In the beginning they traveled the country together after quitting college for a life of adventure. Recently my dad was reflecting on how grateful he was they had taken that time because you never know what the future holds. The days of traveling and looking towards the horizon have given way to full days at work and evenings administering dialysis. Bickering about how to raise kids, or making financial decisions has turned to bickering about taking medications and doing what the doctor said. Sound familiar?
It is incredibly challenging to be a long term caregiver, no matter how much you love the other person. It is also incredibly challenging to be in need of care, to feel less independent, less able, and like your body or mind are betraying you. Caregiving is personal, and some days takes more than you have to give.
I have seen time and again the enduring passion that it takes to care well while staying committed through the ups and downs; to keep advocating when you aren’t sure what questions to ask. To get up early and stay up late, making sure everything is done the right way. Caregiving is an act of true passion and love, but it shouldn’t take all you have to give.
How do we funnel that passion in a way that is supportive yet sustainable? The truth is, not without help. In all of my caregiver roles, I build a team. For my mom that team is anchored by my father but has been cultivated to include family, friends, and caregivers – each helping to lighten the load for the other and bring a different light to my mother’s daily life. We aren’t perfect, but we also aren’t burning out.
Here are a few tips to help you help the ones you love, to stay rooted in the enduring passion that keeps you in each other’s lives.
- Don’t sign up for more than you can handle
- Say yes when help is offered
- Build a team
- See each other as people first
- Take time for you every week
- Ignore the inner voice that says you aren’t doing enough
- Call The Care Plan if you are feeling overwhelmed
This year The Care Plan is working to develop more tools and ways to support caregivers and care recipients. We welcome your engagement and want to be sure you have the resources you need.
- If you are a past, present, or future caregiver we invite you to join our new online support group. The Caring Community can be found on Facebook here. .
- For tips and advice on everything from hiring caregivers to communication, to finding LGBTQ+ competent care, subscribe to our YouTube Channel here for twice monthly videos.
- Follow our Instagram and Twitter for Wisdom Wednesdays to keep you inspired (insert link)
- Call anytime you have questions or would like to talk about the challenges you face.
Thank you for being connected to us, thank you for the work you put in supporting the ones you love. Thank you for bringing your passion even on the difficult days. Take good care, and we’ll talk soon.