I am a full time caregiver to my disabled daughter. Lately, as in for the past year, I’ve been feeling extremely isolated, limited , and basically trapped by my life circumstances. Every direction I try to move, I’m hampered by someone else’s dependence upon me. I also have a husband and other children who need me. I feel this sense of needing to do more in a day , that I’m just wasting so much time, that life is passing by. I have very little contact with the outside world other than running errands and through the Internet world . My daily caregiving tasks don’t take all day , but they need to be done throughout the day.
For example, my daughter needs to be fed , given medicine , have her diaper changed, be moved from bed to wheelchair, at certain times . Then she’s fine for awhile. During the time in between caring for her I do laundry, cook, clean , pay bills, and sit at my computer.
And there truly is no easy solution, or even a moderately difficult solution. All choices involve very difficult actions. Part of the reason I’m so limited in my daily life is that I have no income . In order to produce an income, I’d need someone trustworthy to take over my current job as caregiver. It’s a Catch-22 that all mothers have, but especially hard when your child is non-verbal, and totally dependent on you. One option is to find work nights and weekends but then I’d never see my husband. I’m not sure that would be so helpful to our marriage. And the fact is I don’t really trust a non-family member with my precious daughter. Not to mention that finding someone who wants to drive out to our rural home for a part-time, low-paying job is not easy.
This summer has been extra difficult for me and my non-disabled kids because we are so tight financially that we can’t do anything fun. Water parks, movies, trips to the beach are all so expensive. I start to plan a fun day then I think , no, we can’t afford it. We are deep in debt and I’m trying hard not to go deeper. And stuff keeps coming up, like unexpectedly replacing a tire yesterday for $155. So many things needing repairs. The lawnmower, the roof, the truck.
It could be worse. God always provides for the necessities. So why do I feel like this? I’m not good at being poor and staying home day after day after day. I wasn’t raised like this. I did fun stuff in the summer when I was a kid and when my older kids were young. Things have changed and I just don’t know how what I’m supposed to do. Our daily routine has been reduced to mostly eating, sleeping, and playing video games/being online . And of course I run. Even my running is limited. I can leave the house for a few hours at a time, but that’s not really enough to participate in the outside world.
People who don’t know us very well tell me to do this and that. But I have no help with my daughter . I can get an occasional babysitter but it’s unpredictable. And most of their ideas require, at the very least, money for gas and food. Something’s gotta give . I’ve been praying and asking God for guidance . I feel like He’s keeping me here with my daughter, so I am trying hard to be patient. Some days are better than others.
I wrote this post a month ago. I’ve since been on vacation away from home , without my family, for a week. All it did is make me wish for more. I missed them, but I didn’t miss the cage.