I have shared before that the COVID lockdowns and isolation have been extremely difficult for Emily. Her agitation, anxiety, and anger increased. Medication has mitigated some of the increase, but the remaining appears to be behavioral. Eighteen months later and things are still complex.
In the past month, the opportunities for Emily to go out have increased. We have been able to access outside services a few times a week. The caregivers report back that Emily was happy, delightful, quiet, and calm. I am grateful Emily is behaving well for others, but there is an undercurrent of resentment that percolates below the surface.
Before I even pull into the driveway at our house, her protests begin. She is angry, agitated, anxious, and LOUD. Loud is in all caps but does not capture the magnitude of her volume. (I downloaded a decibel meter for entertainment and curiosity purposes only. Emily’s squeals range between “construction site” and “rock concert”.)
I have posted photos on social media of Emily in the community looking calm, smiling, and happy. These images bring me great joy with a side of sadness. I want her to be content at home with me. I want to be around the woman I see in those photos.
One of her caregivers made the comment that it appears being at home triggers her agitation. I was discussing this with a friend that I met online. This woman has never met us in person but made a similar observation. She noted that Emily seemed content and happy in photos where she is out in the community and not with Mom (ouch). Her thoughts, while a bit painful to hear, are one hundred percent accurate.
Emily and I have been stuck with each other for a year and ½. We have coexisted in our 1,000 square foot home. I am working hard to make things work. All Emily wants is to get out of Dodge. (What does get out of Dodge even mean? Should I Google that before I post? Probably. If Dodge has been canceled, please let me know.)
While the family is fighting for bandwidth (literally), Emily is stuck watching hours of television or listening to music. Even Emily tires of watching The Wiggles and music videos. How many times can we find Emma’s bow? In case you are curious, the answer is right under her nose.
If someone else in the house wants to watch TV, Emily will protest. Her voice will increase in volume to a decibel that has yet to be discovered in the human species. Have you the movie Splash? Next level, window shattering, screams!
Visitors get the loud protesting calls as well. “Let’s get out of here. Save me from this place. My mom is driving me crazy. I want out of this house.” Her eye-gazes and voice are definitely saying something to that effect. (I am fluent in Emily.)
From the moment she wakes up, she wants to leave the house. She will eye-gaze from the wheelchair to the front door and back again. The eye-gazing is in time with the squeals and yells. I communicate that we cannot go outside right now. This increases her anger and volume.
I am doing the best I can. It is important to remind myself of that. I am keeping Emily safe, clean, fed, and entertained to the best of my ability. I am also working from home. There are bills to be paid. Appointments to be scheduled. There is cleaning, laundry, grocery shopping, and cooking to be done. I get outside with her as much as possible, but she does not want to go out with me. She has seen my face day in and day out. She is over it.
I get it. I understand. When I graduated from high school, I moved out of the house. Most adults, not all, do not want to hang out with mom 24/7. I have memories of my mom telling me she always loves me, but sometimes she does not how I act. I can relate to my mom. I think Emily feels this way about me too.
Today Emily is going back to school. She is scheduled to go five days a week AND from school to her adult program. She will be away from the house from 9-5 each day. I am cautiously optimistic that the extended time away from home will be positive. It will give us the separation we need from each other right now.
I beg, pray, and hope to God, the universe, the C.D.C., (and any other entity with control) that schools and programs stay open. I just do not know how much more concentrated togetherness Emily and I can handle. We have reached our limit of lockdown. We are done with home life being our only life.
Emily needs a life outside of the house with her peers. She needs people other than mom interacting with her. At the end of the day, I want us to delight in being around each other. I want to not only love each other, but like each other again. I want to find the end of suck in the stuck together spiral we have been swirling in for months.
Conversation for Change 