We’re Going to Make It – Pandemic and All

By D.P., parent

When the pandemic hit in March 2020, it seemed logical to move our daughter, *Audrey, to our home. Audrey is 49 and has a developmental disability with speech communication challenges.  COVID-19 has drastically impacted our lives and our mental health.

Audrey lived in her own apartment with daily assistance from paid staff. She worked 2 part-time jobs; went bowling, ate out with friends, exercised at the Y, participated in an All Abilities Choir; attended art class; and church. All of this stopped abruptly last March, for what we thought would be a month or two.

I already worked as one of Audrey’s staff when needed, and Audrey’s dad, *Bill, has always been very helpful. Audrey spent every other weekend with us, so I did not realize how different this would be.  Bill and I are retired and in our 70s. We often socialized with friends, traveled, and had gotten used to sporadically doing what we wanted. We knew we could not continue this lifestyle anyway with the pandemic. Little did we know it would be a year later and we still cannot return to our “normal” lifestyle.

The first few weeks went great–we all enjoyed a break from our busy, fast-paced lifestyles. Everyone being together was fun. But soon Audrey was not her happy, perky self. She missed going to her 2 part-time jobs, seeing her staff and friends, and living a semi-independent life. Bill and I were having similar feelings. Our house was no longer just ours. I missed my quiet morning time with my coffee and paper. Audrey was always awake before us and already had on the TV. I missed having my kitchen to myself. Audrey does not have high support needs, but she needs some support with a lot of things. I never seemed to finish a project without an interruption. I found it difficult to have a conversation with my husband without Audrey around. Last summer Bill played golf but I continued to be Audrey’s main caregiver and had very little time for a break. 

It was stressful for both Audrey and me. We were used to doing things our own way in our separate homes. If I tried to get Audrey to change the way she was doing something, she resisted and got angry. I think she felt that I was a “nosey mother”, telling her what to do and not do more often than was necessary. I would get very impatient at times and would feel guilty when I realized that I needed to give a better explanation of why and how something should be done. And even then, Audrey did not always understand. 

Audrey’s service agencies provided ZOOM and Facebook activities, which saved the day. They started doing ZOOM twice a day. This included exercising 2 times a week, cooking class, playing games, and All Abilities Choir practice. The interaction with friends and stimulus that these meetings provided made a huge difference in Audrey’s mental health and mine.

What helps my mental health is to start my day like a day before the COVID-19 pandemic. I take my shower, put on makeup, and casual clothes. I choose colors and clothes that I like. Audrey and I have a routine which includes exercising twice a week and a few other things we enjoy doing together. At least every other day we make sure we get out of the house—it may be going to her apartment, an appointment, going outside or taking a drive. I try to be more cognizant that we understand each other better, which isn’t easy with Audrey’s communication needs. I help her phone her friends and I call my friends. Sometimes I ask Bill to take over. I run errands by myself.  Sometimes I just take a deep breath or walk away. I say a prayer each day for patience. I mentally think about our blessings, especially that we have stayed healthy.

Having Audrey live with us has given me a lot of insight regarding Audrey that I will be able to share with other staff when she returns home. I appreciate more how much patience it takes with Audrey.

The future looks brighter. Our entire family is in the process of getting the COVID-19 vaccine shots.  Audrey is spending 2 nights at her apartment with the only staff available. While it has not been easy, I know we are going to make it.

*Names have been changed to maintain confidentiality.