The delicate dance of setting boundaries and feeling guilt appears to go hand-in-hand.
As I settle into week 11 of self-isolation and really accept that I’m a full-time caregiver for the unforeseeable future, I’ve had to figure out how I feel about this new schedule thrust upon me - and how I need to make more me time, so that I can come out the other side feeling mentally well.
Yes, of course, on paper that sounds so reasonable…making sure that I take care of myself so I remain physically and mentally strong.
Yet, the reality for many caregivers like myself, is that we have more than one child, and therefore, it’s unrealistic to not consider the needs of my neurotypical son as I try to create balance in my world.
This is when the guilt appears. When you have a child with special needs, the neurotypical child never gets the same amount of attention or your time. Yes, you give them the same amount of love, but he can’t measure love as he can measure minutes on a clock.
My reality is that I’m home all day with both kids. Mike leaves at 7:00 am and returns around 5:00 pm.
During the day, Summer is my focus and therefore my attention and interaction are limited with Jordan. At almost 14 years old, he’s not interested in taking part in his sister’s activities like spelling words on the white board and going for walks at a snail’s pace.
After dinner is the time that I have taken for myself (me time) - where I go for a walk or run, and occasionally meet a friend for a social-distance walk - and much-needed connection.
The evening is also when Jordan wants to spend time together. We started watching Murdoch Mysteries together and are now in Season 10. It has been a great show to watch together as there is mystery that we try to solve and there’s little blood and mistreatment of others.
Recently, I’ve noticed that my body has craved more sleep as I’m getting up earlier with Summer now. The warmer weather and longer days naturally lend to this.
This means that I no longer want to stay up late watching tv with Jordan.
Thus, I’ve started to set boundaries - and it has been hard as I feel so guilty saying “no” to my son. Especially, when I’ve spent the entire day interacting and entertaining his sister. He also didn’t like the new boundaries - even when I tried to explain them. Now, I provide options for him. For example, I’ii say, “I’ll watch 1 episode - with a start time of no later than 9:30 pm” AND “I’ll watch 1 episode tonight and then tomorrow I’ll go to bed earlier.”
At least these small modifications are making a difference as we continue to have us time, it just isn’t as much as before.
One that I’ve started doing on the weekends when Mike is home is starting to ask Jordan to do things. When he’s playing video games with his friends, I’ll ask him to go for a walk, etc.
It’s my small way of showing him that everything cannot be on his schedule. That I do want to spend time with him. That there needs to be a little give-and-take.
This helps lighten the guilt a little. Though at the end of the day, I do know that setting boundaries are important and I recognize the benefits of protecting my well-being....as hard as it may be.
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I am grateful that I get to spend this time with her and her brother. I will honour this time of a more relaxed schedule.
Whichever route a family chooses, what matters is knowing when to ask for help and how to get the right help to care for any family member that needs an additional helping hand.