When Helping Becomes Caring
I’ve written a lot over the years about parenting with a disability like multiple sclerosis (MS) and have never come to any conclusions about it all. What worries me the most is being a burden to my children and my disability holding them back in some way. I also worry constantly about all the things my condition prevents them from doing or stops us doing together.
I get around these worries in different ways. I pay for swimming lessons, for example, as I can’t take them swimming myself.
I used to be a strong, fearless swimmer and went four times a week just for fun. I would have loved to teach them how to swim myself but it wasn’t to be, so instead of dwelling on it I pay for lessons. They are both confident, accomplished swimmers now so I am proud of achieving this for them even though it wasn’t how I imagined it would be.
Helping Hands
As they get older they are much more helpful to me, which is a constant cause of guilt and anxiety. My son is eight years old now and capable, with supervision, of helping so much in the kitchen.
When my husband is at work and I’m alone with the kids, my son puts dishes into the oven, gets plates and other things from cupboards, and generally helps out. This makes it so much easier for me to look after them all day.
My daughter, who’s nearly five, adores cooking and spends many happy hours with me baking cakes, stirring sauces and weighing ingredients. She enjoys it so much, but I feel guilty when I ask her to get things from cupboards or put things in the dishwasher.
I feel guilty as I feel I ought to be doing everything for them, but if they enjoy helping and have fun doing it am I feeling guilty for no reason? Should I just relax as they’re learning valuable lessons about independence and self-sufficiency as well helping me out?
Helping vs. Caregiving
What terrifies me the most is when the help that makes my life easier turns into caregiving.
My husband does lots of little things that could be interpreted as caregiving, but we try not to see it like that. Sometimes fatigue or heat intolerance following a shower, for example, makes putting on my bra a challenge, and rather than watching me struggle my husband will come and do it up for me.
He also pulls my boots off sometimes, or helps me on and off with my coat, as lifting my feet and balance are a constant problem. I can do all these things, but help makes it easier and prevents unnecessary fatigue — so is this caring for me or helping me?
Maybe it becomes caring when I can no longer physically do something and need someone to do it for me. All the things I describe above are things I can still do for myself but need help to make easier.
If my husband or children aren’t around I will continue to struggle until I get stuff done even if it takes me all day and wears me out!
What’s the Difference?
I’m so lucky I have people around to help and I feel for MSers on their own. Many people have carers come to their homes to help with washing, dressing and cooking, and this either has to be paid for or provided by the state.
In the U.K., cuts to local government mean there is not enough money to provide adequate care for people and I’m sure other countries in the world have the same problem. It’s a scary prospect and maybe that’s when you’d call it caring — when it has to be paid for.
Someone on social media suggested it becomes caring gradually over time and all those little things eventually add up to needing a carer. What starts as a helping hand eventually turns into caring.
I would also add that helping becomes caring when the recipient begins to expect it and takes it for granted. I’ve watched people at my local MS treatment centre being rude and ungrateful to their partners, snapping and grumbling and generally being unpleasant.
How must this feel for those who started off helping you out of compassion and love a few years before?
All this makes me think and it makes me so grateful for the help and support I have around me. I couldn’t function at home or at work without the kindness of others, so I need to count my blessings and show my appreciation a bit more. I need to remember not to take help for granted and never to snap or be grumpy to those around me.