We’ve heard a million times this holiday season that it’s “better to give than to receive” and it got me thinking about the role of caregiver in our family. I was the primary caregiver when Mo got sick, and the very next year Mo became my caregiver when I was involved in a serious car crash. We have both been on the giving and receiving ends of “caregiver” and I’m torn about which side really was the fuzzy-end-of-the-lollipop. Maybe they both were.
On one hand, as the patient you have the physical pain and helplessness, fatigue, and frustration about “no one understanding” what you are going through personally (loss of freedom, loss of independence, loss of identity). On the other hand, as the caregiver you have the emotional pain and helplessness, fatigue, and frustration that “no one understands” what you are going through (loss of freedom, loss of independence, loss of identity)… mostly because you keep it all pushed down to just get through the days.
Being a caregiver can seem Sisyphean at times. Just as the patient starts getting positive results from one course of medication, another symptom pops up that sends both of you to other specialists and doctor’s offices. You’re modifying your diet and schedule to that of the patient’s, all while keeping up with the “regular” daily chores and household. You’re trying to make everything “normal” for everyone when everything is anything BUT “normal”. And chances are you’re doing it with your mouth shut, because isn’t that what you’re supposed to do? Well, no, not really.
It’s very easy for caregivers to fall into playing the martyr. I remember so many times people asking me how I was doing only for me to rattle off Mo’s latest test results or prognosis. No one was asking me about what I was feeling, or at least that’s what I thought. I just sucked it up and took one for the team. And there is “no “I” in team”, right??? But there is an “I” in “I quit”, and that’s what I really wanted to say most days. Being a caregiver is one of the most exhausting, stressful, and underappreciated jobs in existence. We get it. Boy, do we get it.
We want to let you know that you don’t have to do it alone. The National Family Caregiver Support Program (NFCSP), click here for website, has some of the best information we can find on support resources for caregivers.
Eldercare Locator, click here.
Family Caregiver Alliance, click here.
National Alliance for Caregivers, click here.
National Family Caregivers Association, click here.
The Myositis Association (TMA) points to a publication by Washington State Aging and Disability Service’s Department, click here for the “Family Caregiver’s Handbook”. And click here for TMA’s “practical concerns” links and resources for caregivers.
Of course the most important support a caregiver can get is the support of the cared for. Talk about it together. Talk about it a lot. Talking may be scary or awkward at first, but stick with it. Things change. People change. What worked at the beginning may not be working now, or won’t work in the future. Don’t be afraid to speak up. If you need help, say so.