A Parent’s Love: Aging and Caring for an Adult Child with a Disability

Over the summer, I attended a conference focused on helping students with a disability smoothly transition to a fulfilling life after high school. I was an exhibitor for the event, and as I was rolling my cart of brochures and giveaways into the convention center, I noticed a father and his daughter on a bench outside. She was a paraplegic, probably seventeen or eighteen. He was patiently and gently spoon feeding her yogurt. As she would take a big bite, he would beam with pride and they both would smile. He was so proud of her accomplishment. She could feel his unconditional love. This was just one of the interactions I witnessed that day as parents clamored from across the state trying to advocate for their children and ensure they will get the best care.

A month or so later, I was in another part of the state attending a collaborative meeting where teams of professionals and family members meet to discuss resources available for adults with disabilities. On this particular day, a mother – probably in her late 70’s, brought her 50-year old son, Johnny with her to the meeting. He is autistic and can’t be alone. For over a half of a century, his mother has been his primary caregiver. The professionals where talking about activities in the area and someone mentioned painting. Johnny’s mother perked up and proudly pointed her index finger towards Johnny. He has a love of drawing and painting. His mother proudly picked up his notebook and showed everyone his sketches he had been working on during the meeting. She beamed with pride as he spoke up to tell us what he likes to draw and where his artwork has been displayed. She was so happy to shine the spotlight on Johnny and you could tell he appreciated his mother’s nudging.

These experiences made me reflect back on a community outreach project PA Link worked on last year. We helped promote showing of the documentary, “Mimi and Dona.” The documentary chronicled an aging mother who always cared for her disabled daughter, Dona. But Mimi’s health was declining. Her other children wanted her to place Dona in a facility. Begrudgingly and heartbroken, she found Dona a long-term placement. I won’t give any spoiler alerts, but it’s worth a watch. It shows the struggles families, especially parents, endure when making decisions regarding their adult children.

We know it’s difficult to take the steps to pre-plan as we age. No one really wants to plan for their incapacity or death, but it’s crucial, especially when someone in the family has a disability and will inevitable have needs. The parents I met at the conference are struggling to navigate the system for their teenage children. Imagine the difficulty for an aging parent to line up these services while trying to coordinate care for themselves as well. It’s not any easier when another family member has the burden either.

So what can families do? Talk to professionals. Start with Centers for Independent Living, Aging offices and elder law attorneys. Contact PA Link to get you started on the journey. It’s hard to come to the realization that aging parents won’t live forever and no one will take care of their child the same way or perhaps, as well as they would. Undoubtedly, it can be a struggle, but families, especially parents can feel a huge sense of relief when a good plan can be created and everyone involved is prepared for a best-case tomorrow.

[Bottorf is the PA Lead Link Coordinator for the Aging and Disability Resource Center. She covers nine counties, including Union, Snyder, Northumberland, Columbia and Montour. She can be contacted at mbottorf2016@gmail.com.]