Recently, one of our columnists, Kevin Schaefer, took to the SMA forums to discuss his experiences with hiring new caregivers. His portrayal of what these experiences entail certainly resonated with me, especially during this particular season in my life when I also am beginning to hire new caregivers.
I’ve recently ended a three-month “drought” of not having any assistance, but in spite of this celebratory dance my parents and I are doing, new caregivers mean new routines and learning to acclimate to one another while getting up close and personal about my life with SMA. It can be tricky at times. By nature, I’m a guarded person, so having to throw myself into situations in which my life is suddenly handled by a stranger’s care can be somewhat overwhelming. At the same time, however, the help my parents and I receive from caregivers is tremendously vital to my independence as well as the respite they provide to my parents.
As far as my physical needs are concerned, my parents are my main caregivers. I almost feel uncomfortable calling them that because, first and foremost, they are my parents and care for my needs out of love, not obligation. For this, I am grateful. But for all intents and purposes of this column, because they handle the majority of my caregiving needs, technically “caregivers” is an applicable term.
Nevertheless, caregivers play an integral role in our lives. For three months, essentially my mother and I were on our own because my father works full time. Toward the end of our “drought” in late December, not having added help around the house began to take its toll on my family. My mother, being the selfless woman she is, put her needs aside to focus on mine. After many stressful days at work, my father had to tack on the errands my mother couldn’t do to his route home. And I began to carry the burden of the added stress placed upon my parents. By the end of the day, we were always so exhausted.
Now, we are in the midst of hiring two great girls, and as Kevin mentioned in the forum, there’s always a certain level of anxiety that comes with hiring someone new. Having to dissect my routine is a lengthy process, and allowing others to dive headfirst into my care can be a vulnerable experience. Aside from my own personal feelings, doing my best to reassure and not overwhelm these girls is equally important. After all, they’re usually just as nervous, too!
The first few weeks of the training process involve lots of communication and a detailed narration as I go about my routine. Something as simple as me asking my caregiver to move my hand to my wheelchair’s joystick turns into:
“Could you move my left arm about ¾ of an inch to the right? Nope, your other right. OK, maybe half an inch. Perfect! Now if you could just extend my right wrist so I can reach the joystick. Don’t worry, you won’t hurt me! OK, good. See, you totally got this!”
This is just one of the many examples you’d witness if you were a fly on the wall with a new caregiver on the job. But, as the saying goes, that’s just par for the course. In spite of any anxieties and overwhelming feelings that come with the hiring process, I’m grateful to have outside assistance from the community that helps me gain independence and meet my everyday needs.
Do you have any input from your own personal experiences with hiring caregivers? Let us know in the forum.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.