What is a Caregiver?

When I was recently asked to do a caregiver interview for a fellow spoonie blogger, Julie Ryan of Counting My Spoons**, I was excited to have the opportunity to share my story, but the more I thought about it, the more I wondered if I could really call myself a caregiver.  After all, even though my boyfriend Nick is fighting severe fibromyalgia and chronic fatigue syndrome, he is still physically capable to a degree and as self-sufficient as possible.  I know there are so many with multiple illnesses and ailments who need significant care just to get through the simple functions of daily life.

To satisfy my curiosity, I thought I would start with the standard definition.  Merriam-Webster defines a caregiver as "a person who provides direct care (as for children, elderly people or the chronically ill)."  This seemed like a pretty vague and non-specific definition to me, so I kept searching.  I came across one that spoke to me on http://robcares.com/ which defines a caregiver as "a person with love in their heart and the knowledge and desire to make their loved one's medical challenges more bearable."  By this definition, I think I can certainly consider myself a caregiver.

I really had to think about what exactly it is that I do to help Nick on a weekly basis.  We don't live together, but I still try to spend as much time with him as possible -- usually 3-5 days a week.  Fibromyalgia and other chronic illnesses can be very isolating.  You would be surprised at how just your physical presence can do so much for someone who might otherwise spend most of their time alone.  When I'm with Nick, we cook and clean together, do yardwork, talk and watch TV or movies.  On good days, we might go grocery shopping or out to eat, sit outside or spend a couple of hours at a festival or with friends and family.  When he's in a bad flare, I try to ease his muscle tightness with a massage and lots of cuddling on the couch. 

Nick sometimes has a hard time reading and understanding books because of his fibro fog, so I will occasionally share or read information from whatever educational book about fibromyalgia I happen to have with me at the time.  I also help Nick run a couple of Facebook support groups for those fighting fibromyalgia and am trying to get more active on Twitter and this blog to raise awareness and show support from the caregiver perspective.

As a caregiver, I have heard that it is very important to not lose sight of yourself and your own hobbies.  I have a very nurturing personality, which can be both a curse and a blessing.  It helps me be more sympathetic and compassionate to others (and thus willing and able to help them), but it also sometimes keeps me from taking care of my own needs or putting myself first once in awhile.  It's a delicate balance for me, but it helps tremendously that Nick is the kind of person to not let me shoulder the entire workload alone.  We are very similar in that we tend to put our partner's happiness and well-being ahead of our own.  Obviously, there are times when Nick has to put himself first because of his health, but overall I don't feel that I'm in any imminent danger of caregiver overload.  It's certainly a possibility someday that it may happen, so Nick and I will be sure to discuss this often.

Peace and Love,
Kim

**My interview will be featured on Julie's blog on Wednesday, July 23, 2014 if you are interested.