Things are a bit difficult this morning. Katherine and I had one of our very rare differences of opinion last night. As with most of these things, it was a simple event that clouded a much more serious issue.
She wanted to put skin creme and powder on my feet and other personal areas after my shower. I just wanted to be left alone, just this time. I am usually fairly patient around all of this; it makes her happy to look after me in this way. Sometimes, however, I just feel like I am being pushed around. So last night I said "No" and was quite insistent about it. She got upset that I was refusing to be cared for.
It's an interesting bit of ground to cover. At what point can I, as an ALS patient, refuse a particular bit of care? In my mind, that point should be always and anytime. I am the one who gets to decide how my body is cared for. I am the one who gets to say yes, or no, to a particular treatment or activity. On the other hand, Katherine cares for me deeply and this activity is an intense part of her caring ritual. To refuse care is to refuse her, something that undoubtedly hurts.
I was thinking last night, as she was pushing forward, insisting that I submit, because, in her mind, I needed this act of care. I wondered if the genders were reversed, what would the situation be? If I were a woman saying no to a male caregiver who wanted to put cream and powder in my private places, how would that play out? What would be my defenses against someone physically stronger than me? Would it end up with a call to the police? What would the charge be?
It's a complicated thing, this caregiver role, especially when it intersects with a more personal role. That's one of the reasons I have always said I don't want Katherine as a caregiver. There is a degree of entitlement when she believes she knows what is best for me, when she feels I need care even if I don't want it. She gets upset when I say "no," and even more upset when I push back. It's got to be a tough balancing act, letting me live while watching me die. I don't care for it either, but I still need to make my own decisions, regardless.
The blog was posted originally on July 7, 2015.
Note: Visit mda.org/als to learn more about MDA's fight against ALS. The site offers powerful stories by people living with ALS, including Richard McBride, as well as other helpful resources so you can get involved and help take action to end ALS today. And, be sure to visit MDA's ALS disease information center to learn more about ALS, its causes, signs and symptoms, research and more.
About the Author
Born in Victoria, British Columbia, far too long ago to make a difference here, Richard McBride was, up until recently, a lifelong resident of the Vancouver and Fraser Valley region of Canada's most western province. McBride has had the joy of a very diverse career ranging from his first career as a stockbroker to training consultant and technology consultant to project manager.
Major changes in his life before his diagnosis of ALS meant his relocation to Calgary, Alberta, Canada. It was there that he received the diagnosis in November 2012. McBride continues to share his life and experiences both through his blog titled Richard is Living with ALS and through a tremendous group of friends, support specialists, and most importantly, with his four children and three grandchildren, with a fourth on the way.