Flowers and Beer to All the Caregivers
Living with a chronic disease is no fun. It can be unpredictable, frightening, and frustrating; but it can also provide opportunities for learning and growing as a person. I have met some of the greatest people in the past decade who just happen to also live with MS or RA. We are a resilient bunch, that’s for sure.
I have also had the opportunity to meet some of the amazing care partners and spouses of these individuals. MS can become an intruder in a relationship and wreak havoc. Some relationships do not survive the devastation, but others become stronger.
My husband and I are fortunate in that our care partner needs have been limited to helping to reduce burdens around the house. I have not required much hands-on caring due to MS challenges. I have only imagined with it must be like for others who have needed to depend upon their caregiver/partner for basic activities of daily living (ADLs as they are called in healthcare speak). These are routine self-care activities that most people can do without assistance, such as eating, bathing, dressing, going to the toilet, personal hygiene (grooming), and transferring (moving from one location to another).
Until recently, I had not given ADLs too much thought on a personal level. I haven’t had children, so I’ve only had to assist with these activities on the few occasions where I’ve helped to care for my nephews when they were very little. Young children depend upon others to help take care of them and over time they learn to do these things for themselves.
But three weeks ago my mother fell and broke her arm at the top of the humerus bone. Fortunately no surgery was required but she is still unable to do many things for herself at home. Since she can’t lift her arm, she cannot bath, shower, shampoo, or dress herself. I have had to help her accomplish these tasks. It takes some preplanning to make sure that we can get things done in a timely and efficient manner. She also can’t drive yet, so she depends upon me to take her to appointments and run all of our combined errands which also means that I’m not able to do all of the things that I usually do on a daily basis.
Part of me is glad to be able to help. If I had a “normal” job and was not at home most of the time, it would be much more difficult to be available to her 24/7. But part of me also thinks that I’m too young to have to take care of a parent at this point in my life (based upon the relative youth of my aging parents). This also makes me think about all of the spouses who certainly didn’t plan to become care partners at an early age to their loved ones. They are the true heroes on this MS journey.
It’s not easy to selflessly care for another individual. I’m also embarrassed to say that there have been times that I internally sighed when I needed to stop what I was doing and help my mom with something. But the day that I was able to both help my mom shower, wash her hair, and get dressed, and get myself cleaned up in under 45 minutes, I gave ourselves a cheerful whoohoo and congratulations for working together and getting better at this ADL business.
Getting a little taste of what it’s like to take care of another adult in such a personal way has given me a new appreciation for all of those care partner heroes that do this on a regular basis. My mother’s arm will heal and she’ll be back to scrubbing her head in exactly the manner she likes, and I’ll go back to doing what I do with a little growth in empathy as a by-product.
So I just want to send a virtual bouquet of flowers, six-pack of beer, hug, smile, coloring book, etc, to all of the fabulous spouses, children, parents, friends, and professional caregivers who help to take care of the many people living with chronic disease, disability, or injury who just need a little help completing tasks.
Thank you!! You are the rock stars in this community!
Do you celebrate your MS Anniversary?