Tonight's picture was taken on Christmas in 2008. We got home from the hospital on Christmas Eve, and frankly I do not know how on earth we even got Christmas presents for Mattie. Clearly we did, and you can see Peter helping Mattie to open one of his gifts. It was a very depressing holiday for us, Mattie was in intense pain, dealing with significant depression, anxiety, and traumatic stress. I remember we were walking on eggshells at home and despite how overwhelmed we were, we always worked hard on making Mattie feel safe, secure, and busy with activities and play.
Quote of the day: Today's coronavirus update from Johns Hopkins.
- Number of people diagnosed with the virus: 51,250,698
- Number of people who died from the virus: 809,714
Here I am again, sitting in front of the computer to write Mattie's blog. I can't say my day today was any different than yesterday. From the moment I wake up, I am busy doing tasks and chores. In fact, other than meals and writing this blog, I am never sitting down. By the end of the day, I am worn out. Just to start the same routine the next day. Even when Mattie was sick, my days varied more than they do now. As we were in the hospital, there were constant interruptions in our room, visitors coming in, volunteers, and guest artists working with the kids and families. Though I was caregiving then, my caregiving role now looks much different.
When I was in graduate school, I devoted my research and dissertation to the stresses of family caregivers of older adults. After Mattie got sick, I deduced that the stresses I experienced were similar to those caregivers of older adults. Now I can safely say..... yes and no. Caregiving for a child is much different from caring for a parent, starting with the fact that a child is a child. The caregiver is the adult on duty, who sets schedule, limits, and rules. It is quite different for caring for a parent. That is only one of the difference but it is a big difference. Similarities of course are the non-stop chores, medical care management, cooking, cleaning, entertaining, and so forth.
At the end of each day, I am worn out, and like any caregiver, I have little to no time to do anything for myself. I can't even get to Foundation work, much less return a phone call or email from a friend. It is a sad commentary and my hope is things fall into place and I learn how to juggle all of this, but for now I am overwhelmed and not having any down time I find very difficult.
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