My son Maclain needs 24-hour care, 7 days a week. He isn’t medically fragile, or living with a life threatening illness, but he does have significant physical disabilities that do not allow him the freedom to perform any of his own daily living tasks. None. He is smart, and funny, engaging, charismatic and kind. But none of these personality traits provide him the physical ability to help himself in any way with any task: eating, drinking, dressing, playing video games, or even scratching his nose. Therefore, someone needs to be with him all time. Even if not sitting beside him, they must be within ear reach.
Also speaking of ears, he is deaf and wears cochlear implants, and they come off quite frequently requiring someone else to place them back on his head. Without them on, he cannot hear the world around him.
He is 12 now, which in the grand scheme of life doesn’t seem like a long time, but when every moment of your day is spent hands on caring for someone else it can wear you out so very quickly If I am not involved in the moment with the caregiving, I am planning for it, organizing it, or worrying about it. Never forgetting that I work full time, have another child, groceries need to be purchased, the house has to get cleaned, there are appointments to be made, and school needs to managed. Life is exhausting enough without adding to it the additional stressors of caring for someone who relies on you for everything.
It isn’t possible to do it all
About once a week I have a full on breakdown with full on tears. Sometimes triggered by an external factor, or a challenge that just seems too daunting. Sometimes it just happens when I am trying to do something at home and get interrupted 25 times to bring Maclain a drink, give him a snack, put his cochlear back on, free up a trapped finger in his wheelchair, change the YouTube channel, and the list goes on.
By 12 years old, these are all functions that a child can do independently, so Mom can enjoy a hot beverage on a Saturday morning, or even catch up on a Netflix show after dinner. Usually when this happens to me, or when I receive a message from a friend in a similar situation, these 5 hints or suggestions emerge in one form or another.
5 Ways to Manage Caregiver expectations
Be Kind to Yourself
This doesn’t always mean a bubble bath with a book and a glass of wine. This means you are doing the best you can at this moment in time with what you have available to you. Its human, its ok. Don’t beat yourself up on days when the universe seems to be doing that to you already. Give yourself a break. Be kind to YOU.
Be Okay with Saying No
This means no to adding more to your plate. This means no to that repeated ask for something. It means no to whatever you can’t handle any more. You need to see the looks I get from people in public when I say no to Maclain because quite frankly I have had enough some days, and while it might seem mean, he isn’t going to wither away if I don’t drop everything to get him a snack that very moment. Say no and don’t let any guilt set in.
Set Your Limits
Knowing what is coming down the pipe or what you can control often helps us deal with the things we can’t control. You cannot do everything, every day and not pay the negative price on that. Some aspects of caregiving are non-negotiable, like medication administration, care routines, mealtime, etc. But when you know you have all of those things to manage, plus life itself, take stock of what you really can handle and adjust where you can. Ignore the nagging list of “should” and recognize your limits on what you can manage. Some days will be more than others but set those limits.
Take Time to Reset
I use this term a lot now. The day after a stressful weekend, or the morning after a rough night. An hour after a breakdown, or even a week after dealing with more than is humanly possible. I hit reset. I actually say it out loud so myself or to others. “ I am hitting re-set here” What does that mean? Hard to say for everyone, but for me it’s a time to just re-focus, calm down, re-asses, gather thoughts, or simply take a nap. I also have started using this for relationships and other situations that might not be going so smoothly. And it seems to make me feel better and feel a sense of order again that things are back on track.
Ask for Help
Break down what you need help with, big or small. Even having a friend walk your dog once a week or bringing over a hot cup of coffee when you haven’t had a second to take a break one to make one can be helpful. Friends and family want to help out where they can but they don’t always know how. There is no shame at all in reaching out. Caregiving is a huge responsibility that needs all hands on deck.
How do you manage the expectations that comes with being a caregiver?