A medical oversight brings caregiving changes in my home
I can no longer be expected to be the caretaker for everyone
The end of the year offered up two beautiful weeks with my family and very few responsibilities. We canceled pool therapy, had no medical appointments, the kids were out of school, and I took a break from writing. We spent 10 days at home, just us. It was exactly what I needed.
But the new year has brought a big change to how I handle caregiving as a result of me messing up the most significant moment of care for my oldest son, Max, who was scheduled to have surgery on Dec. 1.
I share seven children with my husband, Jason: Lexi, 24; Max, 20; Chance, 18; Rowen, 16; Charlie, 15; Mary, 11; and Callie, 3. Max, Rowen, and Charlie all live with Duchenne muscular dystrophy (DMD).
On the day of the procedure, we drove the five and a half hours to Denver, got checked in, and Max was already in his gown when we realized that I hadn’t withheld a medicine that needed to be stopped a week before the surgery.
It was a gut punch to drive all that way only to turn around and come home without having the procedure we had gone there for. I was an anxious mess and felt like I had failed miserably as a caregiver and mother. I typically pride myself on keeping track of things, and yet here, I messed up.
If I’m being honest, it wasn’t just my mistake. Jason and Max went to the anesthesia consultation, but neither of them told me about the medication holds. Still, I always double-check, and this time I didn’t. It felt as if it were my fault. My brain tells me I’m wrong, that Max is an adult, and my husband is capable, but my heart makes me feel awful.
Doing ‘what we will need to do’
As the weeks have passed, though, I’ve come to a couple of realizations.
Firstly, by always being the one to take care of every little detail, I set myself up for failure. Jason and I share three sons with DMD; Max is already an adult, and the other two are nearing adulthood. Yet I tend to take care of everything, regardless of what the men in my life may or may not be capable of.
By my consistently handling everything, my husband and sons have come to depend on me. But when I have a misstep or overlook a detail, no one is there to catch it. If we were all equally responsible, we would catch those things.
Secondly, since my sons were diagnosed with Duchenne in 2010, we’ve had hundreds of appointments, if not thousands. Over the years, we’ve scheduled two at the same time to save time, often at the request of the neuromuscular clinic, as it has been the only way to have them all seen while we were there. And we’ve always obliged, like the polite Midwesterners we were raised to be. Jason would go to one, and I would go to another. But I’m not going to do that anymore.
I’ve tried to limit the time our family spends in hospitals and clinical settings, but my sons’ needs are more complex now, and I can’t afford to miss an important message from the medical team. We are at the point where, if we need to be in the clinic all week or even longer so that I can attend all my sons’ appointments, then that is what we will need to do.
I made a mistake, and it’s been humbling, but it’s helped me make some crucial realizations. My husband and sons cannot expect me to be the medical caretaker for everyone; they need to take more responsibility. However, we can no longer rush through our appointments. We need to take the time to hear and absorb all the essential information.
Note: Muscular Dystrophy 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 another 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 Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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RAMESHAN KANNOTH
You seems to be a perfectionist, hence you are feeling guilty. May be you should be little less hard on yourself, you are already raising 7 children and that itself is a great challenge. Best wishes.
Ilyne
I can totally relate and I only have two sons, and only one has BMD.
Kath Edwards
Hi Betty, I love your column, you are such a busy mum doing the best for your lovely and very large family. Please don't feel bad about a mistake, it's amazing how much you organise for everyone. I do however totally relate to what happened
I have Pompes disease, rare form of Muscular Dystrophy, often known as a Glycogen Storage Disease type 2. I'm 67 so getting on a bit now.
I was diagnosed at the age of 44 after feeling more exhausted as I got older, and unable to continue doing the things that I had done for years
Myself and my husband have 3 children and I was ok while I was younger. My husband spent a long time in the RAF and a lot of our life was down to me, then he left the RAF to work for himself as a computer consultant.
I was able I stop working and I ran his company.
It worked very well to start with, as I did everything for the company he was able to spend more time with us all when he was home. I also worked part time with my sister in a craft business
Unfortunately I started to feel more and more tired and unable to do everything I had been used to doing
I would sort most things out for our kids and it worked fine..
Then finally when I was diagnosed with MD I realised it wasn't just getting older and I had to take a look around and reinvent the way I did things.
My kids and husband were always helpful to me and I was so grateful to them all. My oldest son was just about to start Uni 4 hours away and my daughter was in her last year at school then she too chose to go to Uni 2 hours away.
I was left at home with my youngest who was 14 but very good to me.
It was after the older ones left home that I realised that I actually hadn't done them any favours whilst doing everything for them.
On day I was at work and my oldest singer, age 29 trading me over morning and said "hi mum, can you tell me how to cook a jacket potato?"
I thought he was joking and said "what do you mean, James, you know how to cook one don't you"
Then he had to persuade me that he didn't, because I always did the cooking!
Well whilst it was funny, it made me take a long look at how I actually organised things after home, and I realised that In order for them to be independent, I needed to let them do more for themselves.
So I did do that but I found it very hard, even though they were fit and healthy, as I always liked doing things for them and loved cooking etc
However I persevered and it was good for me and the rest of the family. They grew more independent and I grew a bit stronger.
So please don't feel that you let them down, it's more that they learnt to take a little responsibility and you had an opportunity to pass it on to them
They are older now and it will be a good thing as they are growing now and probably will like the chance to be able to do it
It's very hard being a mum, we are programmed to do all we can to love them and teach them to grow.
But it's very hard to let go.
I truly hope that you don't feel guilty, you've inadvertently let them grow a little more than you intended, but in a good way.
I understand that there are things that your boys can't do, but there is still a lot they can, and it may have given them a chance to feel more useful to you, which they could feel very grateful for.
I know I'mI maybe not using all of the right words and I sincerely hope that I haven't upset you because I really admire you.
I'm sure it will work out well for all of you because you are such a lovely family.
Take care of yourself. With very best wishes
Kath Edwards