November is National Family Caregivers Month. According to SAMHSA, “family caregivers are defined as family members or someone who is identified as ‘family’ who provide assistance and support to an individual with a chronic health condition – including mental health and substance use conditions, disability, or functional limitation. This can include a variety of situations including but not limited to grandparents raising grandkids, teenage son or daughter assisting their parent with a significant health issue, and a parent who is raising their children while taking care of an elderly parent with dementia.” Upward of fifty million Americans fall under this umbrella.
Many train to be caregivers in the medical field, which is an honorable undertaking and fulfilling career. When it comes to being a caregiver for a family member, however, that almost always happens unexpectedly and often with little or no preparation. Just the same, it is inevitably a choice, with some feeling inadequate to do it or don’t have the right circumstances and designating it to others. Thus, those of us who need that care should never take it for granted that our family is just doing so because they’re as stuck with our condition as we are.
Having been born with Cerebral Palsy, I’ve needed a caregiver all of my life. From day one, my parents have been my main caregivers, except for when I was in school and had aides who helped me through the day. I never took for granted the sacrifices they have made and their choice to be as involved as they are in my life. In all honesty, though, I haven’t always appreciated having my parents called my caregivers.
When I was younger, especially, I reasoned that my mom was my mom, and she was just doing what all moms do—take care of their children. I felt that it amplified my disability to call her a caregiver, and to my gratitude, she was pretty much of the same mind. We love each other and get along well most of the time, so it’s merely our normal life.
I doubt that I’m alone in this, as many who have a handicap of one sort or another don’t want to be defined by that alone. If you’re married, you may rather view your spouse as a spouse rather than a caregiver, having vowed to take care of each other in good times and bad. Does it change or even reduce your relationship if you accept that additional term?
While you don’t have to drum that label in your head, it’s better to embrace the fact that needing more care than the average person does change how you interact together. If your challenges were brought on by something later in life, you have to lower your expectations of your caregiver, not forcing them to do things as you used to do them. Even with regard to tasks they’ve always performed up till now, they might not be able to devote the same level of attention to them because of the new responsibilities.
If you’re in my boat of being born with challenges, you still have to adapt to working as a team, particularly as you grow older. In my case, there are times when I’ve silently lamented the fact that I can’t have the regular progression I’ve observed my peers enjoy, gaining more freedom and independence with maturity. Because of this, I sometimes wish I could just make my own plans or be able to do something spontaneously without asking my parents for the green light.
I’ve grown to realize, though, how vital teamwork and patience is, and that in many cases, it has to happen on both sides. Even if it’s hard to admit, we have to acknowledge that our caregivers don’t have the freedom they would like to have, either. Just as we may not be able to visit someplace at a moment’s notice, they can’t desert us for the day without making suitable arrangements.
Does this caregiver and care-liver arrangement mean that you’re no longer in your other roles of spouse, child, parent, etcetera? Not at all. When you display mutual love and respect for each other’s limitations, you’ll maintain and even strengthen those natural bonds as you tackle obstacles together. Like I mentioned earlier, family caregivers are still making a choice to fill that role, even if it’s unexpected one, and it’s a choice of love. If we’re on the receiving end of that love, we should refrain from overlooking that gift and reciprocate it, despite disappointments and frustration.
Should yielding to our caregivers’ challenges force us into a box of never wanting to ask anything beyond our regular needs? Find out in my next post.
KarinaBartow.com 
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