We must take care of ourselves so that we can care for others. We cannot pour from an empty cup, yet we try. Todd and I have worked hard to develop a care plan. We have created a community to support our family. This allows us time to take care of our needs. AbilityFirst is a local nonprofit that has been an integral part of our care plan for Emily and our family for years.
AbilityFirst is a program that supports children/adults with physical and intellectual disabilities. Last week, I had the honor of speaking at an AbilityFirst fundraiser. I discussed the impact they have had on our family. I shared how difficult the closures of school, support services, and the AbilityFirst program was on our family. I always say it takes a village to raise up Emily. The lockdown negatively impacted our families mental health and wellness. Programs like AbilityFirst are key to supporting the mental, physical, and emotional well-being of our family.
Kathy and Darrel
Here is the message I shared. It is my hope that every caregiver has a wonderful support community. Our family is lucky and blessed to have amazing support. We are grateful to be able to lean into it as school restarted and many services have resumed after a long year.
RAINBOWS FOR ABILITYFIRST:
My daughter, Emily, has been a participant at AbilityFirst for 15 years. I cannot believe it has been that long. I love the opportunity to share the impact and support AbilityFirst has provided for our family. The pandemic of 2020 magnified the importance of AbilityFirst.
Our family is not unique. I do not think anyone in the world can say that the pandemic did not impact their life. We have all suffered losses. The loss of friends and family. The loss of gathering in-person for live music and events like this. We missed weddings, funerals, graduations, cancer screenings, well-checks, dental cleanings to name a few.
Overnight the world seemed to stop.
In our home, we experienced many repercussions. In 24 hours every resource that Emily had access to was gone. Think about how difficult it was for you to adapt to the changes that happened overnight. Imagine if you had an intellectual disability that prevented you from understanding the circumstance. You wake up one morning and your bus doesn’t come to take you to school. You don’t get to see your teacher or your friends. No one comes to visit you at your home. You can’t go to horse therapy or physical therapy. Your after-school program is gone. You cannot go inside any store because you won’t keep a mask on and no place will make an exception. You are a prisoner in your home and you don’t understand any of it. You are abandoned. This is how I can only imagine it was for Emily because she drastically changed during this time.
My Sweet daughter became angry. She was agitated. Her anxiety increased. She became outwardly distraught and depressed. As her primary caregiver, I now had the job 24/7 to meet her needs. I was expected to fill the roles of every person in our care village. We had no external resources, and we had a daughter who did not understand any of it.
I consider myself a good mom and caregiver. I love caring for Emily, but I learned a long time ago that Emily’s care was more than a one-woman job. My ability to meet her needs and my own needs was not possible. Yet, this is where we were.
I struggled through several weeks running myself ragged and juggling all the things as best as I could. At some point, the pressure, overwhelm and exhaustion took over. I felt trapped in my life and in my home for the first time in years. I could not concentrate on my work. I was losing my patience. I was struggling to be empathetic and compassionate towards my family. I was experiencing caregiver burnout.
Caregiver burnout is a state of physical, mental, and emotional exhaustion. Left untreated, it can lead to compassion fatigue. You can begin to get negative and lose your ability to care or have empathy for your loved one. You shut down. It is a survival mechanism. I felt myself on the brink of compassion fatigue.
I could not continue to operate like this. My battery was empty. I had nothing left to give. Something had to change.
We had a family meeting to discuss Emily’s care. We made a plan for me to get out of the house each day. Even if that meant sitting in my car in the driveway. We decided to take a risk and open our home to a few outside people to help care for Emily. I was able to concentrate at work, which had been a struggle for the last 3 months. We had several video visits with Emily’s doctor to try different medications to manage her agitation and anxiety. We had minor success with these tools, but Emily was still not herself. She was still discontent. She wanted her life back. She needed to get back into the community.
After almost a year, AbilityFirst began offering 1:1 community services. It was only a few hours a couple times a week, but it was enough to start seeing changes. Emily was still angry and agitated at home, but she thrived on her outings. She was in her element. I was able to breathe and feel relief. I had time to do more than my work tasks. I had a few minutes to hear my thoughts. I was able to pause, breathe, and reflect.
Since school started back in September and AbilityFirst is offering program 5 days a week, Emily smiles again. She laughs. She is happier at home because her time there is limited. I can take better care of myself. This makes me be a better caregiver to Emily. I am caring for Emily from a place of compassion, empathy, energy, and gratitude again.
The gap that AbilityFirst fills in our family care plan is vital. We rely on them to support Emily in ways we are unable to. The services they offer, help us maintain stability and wellness in our home. Everyone is happier and healthier: mentally, physically, and emotionally.
It is through your support they can continue to support caregivers and the ones we love dearly. On behalf of all the families that AbilityFirst serves, I want to thank you for your generosity. You are rippling change, one family at a time… so keep on rippling…..Because Ripples Make Waves.
Conversation for Change 