Marc has been his wife's caregiver for four years and sometimes finds himself becoming a control-freak. Here's how he finds balance.
Being a caregiver brings out the control-freak in me.
I don't think of myself as overly controlling. If my relationships are anything to go by, I tend to get involved with headstrong individuals. Still, I am particular about how I do things, often right down to the finest detail. Like the order I remove utensils from the dishwasher – little things like this are telling about how deep my controlling nature runs.
When it comes to caring for my wife, my inner control-freak is, at times, helpful. It ensures I'm prepared for any situation. I've developed processes that help me care for her in a safe, predictable manner. For the most part, she knows what to expect.
All this "knowledge" helps me give instructions to my substitutes when I'm away. I pride myself on being a living Caregiver User Manual.
I'm so focused on details, I'll even say which of my wife's arms goes into her jacket first. That would be the arm with less range of motion.
I'll tell them where to leave the wheelchair at night in case of an emergency.
Eating, showering, dressing, you name it... I've got them down to a fine art. All of them present perfect excuses to let my control-freak flag fly!
Being overly controlling is kind of like training for a particular sport. You develop finely tuned skills, lots of muscle memory, and great stamina. Yet, when you're forced to try something new, you feel unprepared and out of shape.
It's easy to become overly cautious about anything outside of your comfort zone. One day, for example, my friend wanted to take my wife to the beach to ride her exercise bike.
Usually, I'd welcome this little respite, but it was 20 degrees Fahrenheit and windy, despite the sunshine. Partly because I'm not fond of the cold, and partly because my wife is more sensitive to cold post-stroke, I asked my friend to come up with another idea.
My friend immediately recognized my control-freak symptoms. When she came over, she ignored me and asked my wife what she wanted to do. The next thing I knew, both of them were enjoying a short exercise bike session on the beach.
Later, my friend thanked me for trusting her. Honestly, this was never the issue, but I did learn a useful lesson.
I've cared for my wife for four years, so I consider myself the "expert" when it comes to her care. That may be true, but it doesn't mean it should be My Way or The Highway.
I'm the best when it comes to anticipating my wife's needs, but she still surprises me sometimes. Even when I'm right, there are different ways to satisfy her than the usual tried-and-tested.
Staying open to alternative solutions can be nerve-wracking, though. Sometimes I just want to get something done "my way", like when and how my wife receives her medications.
Other times, I try not to be such a creature of habit. I ask my wife's preference and stay out of the way of other caregivers. If she's safe and happy, I'm happy.
By my kitchen sink, I have a mat with rounded edges on one side. I like the rounded edges to be the ones closest to the sink. The person who cleans my house insists on placing the mat with the rounded edges facing outwards.
This drives me crazy.
Not exaggerated craziness. I genuinely mean the "I am very close to firing her" kind of crazy.
I don't have anger problems, but I refuse to budge when I say things have their proper place. I don't like anything moved without my permission. I have a system for everything.
But turning the mat around takes a second, so I try and suppress my frustration. I take solace in the fact she's cleaned, and the bending down counts as getting exercise. This behavior aligns with my ongoing goal to lead a Zen-like existence.
The problem is, I face this kind of battle several times a day with different people. Sometimes, I find I'm getting frustrated with myself for leaving stuff out of place.
Turning the other cheek is often the best course of action. I tell myself to "just let it go," and find a way to turn the negative into a positive.
I'm getting more exercise, I'm learning new ways to do things. These are both positives. "Letting it go" also stops me from becoming complacent and lazy, as it takes a lot of mental effort.
When possible, engage your loved one in their own care.
In my case, my wife's speech is limited. She doesn't express her desires very often unless I'm doing something stupid like putting her shoe on the wrong foot.
Still, I ask for her opinion before we do anything. I always make sure she's comfortable, and I hope she'll say if she's not. If memory serves, pre-stroke she was even more of a control-freak than me, which often led to energetic "discussion".
Now, she lets me take the lead in her care. The problem is, I don't want her to feel like my "patient". I'm scared that she'll feel like she's losing her identity, or like she's in an institution. She's my wife first, and the person I care for second. I try not to let her forget that.
I spend about an hour a week, even after all this time, looking for ways to improve my wife’s care.
“Improvements” may include a new device to assist her, a new grab bar, or a different type of therapy. My goal is to take advantage of any advances in care. I want to keep things fresh and evolving.
Of course, this doesn’t mean making disruptive changes whenever I feel like it. Instead, I’m looking at a continuous improvement plan that keeps the caregiving process in sync with our needs and capabilities.
Sometimes, these changes are lasting. Sometimes, they fail. Either way, changes force us out of any ruts and they often reinforce that we’re doing the right thing. I keep reminding myself that caring for my wife is a marathon, not a sprint. She is still young and my caregiving responsibilities will continue to advance over the next couple of decades. Better to take advantage of any advancements now than get stuck using 20-year-old processes.
As in most things, it’s best to find a balance between having a controlling nature and being flexible and open. This approach will benefit you and your loved one, and you’ll both be happier for it.
NPS-ALL-NP-00260 May 2021
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