If You Are A Caregiver
This is the second in a series highlighting “The Complete Caregiver,” whose mission is “to assist parent-caregivers of special needs and medically fragile kids by providing information, activities, resources and support to help them take care of themselves while being great caregivers to their children.”
Below is the second installment of my three-part interview with Lynn Rosser, founder of “The Complete Caregiver.” You can read the first installment here.
POST TWO: IF YOU ARE A CAREGIVER
1. Why is it so important for caregivers to take the time to nurture themselves?
I reference a study on my site that shows how the additional stressors of being a family caregiver (physical, financial, emotional, relationship challenges, isolation, etc.) can have a strong negative impact on the health of the caregiver. (Family Caregiver is the broader term for anyone who is the primary caregiver for a person in their family who has medical / developmental / mental health needs that require extensive participation in that person’s care).
I realized that it would be really easy for me to get burned out, and, having had a major illness of my own in the past, how essential it was for me to do preventative care for myself. So, between the studies out there and the personal knowledge of day-to-day life as a parent-caregiver (can you say extended sleep deprivation?), it became extremely important to look at taking care of myself, so that I could continue to take care of my kids.
Parent-caregivers are not only vulnerable to increased risk of physical disease, they are also at higher risk for depression. This is understandable, really, given the nature of special-needs parenting and how challenging it is; always jumping through hoops to get help, being sleep-deprived, dealing with grief over your child’s struggles, feeling isolated, etc. So mental health is something that really needs to be addressed. Self-care can go a long way towards counteracting stress, which is an aspect of the depression parent-caregivers encounter. Under the Resources page I have some links for Emotional Health, and the Caregiver’s Well section is full of self-care information and ideas.
2. What was your own experience struggling as a caregiver without a resource like The Complete Caregiver (TCC)?
I felt lost. I really wished there had been a central site that provided encouragement, addressed the issues of both organization of my child’s care and self-care, and took me to some essential resources so I didn’t have to dig for them. I also wanted my information in a beautiful, soothing format without the constant distractions of blinking ads and pop-ups, or pages of dense text without visual breaks.
You see, another thing to consider, which I’ve experienced and that isn’t widely recognized, is that parents who have just received a diagnosis for their child and who are trying to get a handle on this huge, scary development in their lives, can be experiencing shock. Information cannot be processed as easily when in this state. You need more visual breaks, multi-media, and cut-to-the-chase how-tos. Too often great information is formatted in ways that feel overwhelming – I’ve worked hard to do it differently on my site, and still provide quality information and advice.
3. What message would you like to give you someone just starting their journey as a caregiver? What is the best way for someone to get started with TCC?
Please know you are not alone. There are resources, there are lights along the path, and there are joys and rewards in the midst of all the things that feel insurmountable and painful. There are people on similar journeys who will reach out to you and that you can connect with, who are full of compassion and will be glad to share what they know. I’m one of them, and I invite you to connect to the site, explore it, and if you like, to connect with me directly at firstname.lastname@example.org. I can answer questions, help you research what you want to know, and give you some support – there is no charge, I’m happy to help!
As to the site, on the homepage there is a link for “New Diagnosis?” under the main links. You may want to start there if you have just received your child’s diagnosis and are looking for a very first step. Otherwise, I would recommend you go to the Caregiver’s Footsteps Step-by-Step guides and see if anything there can help you in a practical way. If you need some self-care, go to the Caregiver’s Well and explore those topics – there is a relaxation exercise, information on journaling, poetry to read, “visual vacations” you can take (love these beautiful videos!), music to listen to, poetry to read, and great info on exercise and nutrition, too.
4. You are also an amazing poet. (You can read a sampling of Lynn’s poetry here). How did this creative outlet help you in your own journey as a caregiver?
Well, thank you!
With both boys receiving diagnoses within a month of each other, I was emotionally overwhelmed. So much emotional and spiritual “stretching” happened so quickly, it went way beyond normal language or conversational words. It needed the language of poetry, metaphor and simile to express what I was feeling, to even get a handle on how I felt. I am working on some new poems as well, and hope to put them together with my previous chapbook of poems “In The Womb Of The World” to create a larger work. Processing this experience does not stop, and when regular words fail, poetry opens up new worlds. I will be writing an article on this very thing for the newsletter of the Family Support Network out in Durham, which is connected to Duke University Hospital. I’m excited to have that opportunity!
Asheville Citizen-Times, 3/28/10
Laurel of Asheville, June 2010
“Your Carolina,” July 2010
Stay tuned for the final installment of our series on The Complete Caregiver – “If Someone You Love Is a Caregiver.”
All images used with permission from The Complete Caregiver.