Each month, a member of the Chapter’s experienced care team answers three questions about ALS and their role in supporting ALS families.
How did your personal connection to ALS lead you to working for The ALS Association Greater Philadelphia Chapter? As a member of our care team, how do you see other care staff taking the ALS cause personally?
I joined the Chapter’s Lehigh Valley Support Group in October 2020, the month my dad got diagnosed with ALS. His diagnosis was devastating, and the support group really helped me by connecting with others facing the same issues. I learned what others did when new symptoms or issues arose, and we could use each other for ideas. I learned a lot about what The ALS Association does to help families. Just by chance in one of those meetings, I heard about a position with the Chapter that dealt with the Equipment Loaner Closet and In-Home Care grants, and I knew this job was for me. I wanted to help others dealing with this disease as I know first-hand what they are going through. Everyone that works here truly cares about each patient and is dedicated to helping them the best they can. They get to know the families well, visit them in their home and ensure they have all the resources they need to make their lives a little easier.
You oversee the Chapter’s Howard I. Abrams In-Home Care Program. What are the first questions people should ask when deciding to get home care and what does the Chapter offer to help?
Choosing to get in-home care is usually very difficult for families. They feel guilty or are nervous about who may be caring for their loved one. It is natural to feel this way. Some questions they can ask themselves: Am I able to take care of my own responsibilities (work/house/kids) while ensuring my loved one is safe? Is it better if I am refreshed physically and emotionally so I can take care of my loved one when we have no help? If you decide to get in-home care, there are many questions you can ask agencies to ensure you make an informed decision. Such questions are: What specific services are supported (personal care, medications, meal prep, housekeeping)? Is the agency licensed, insured, and bonded? What are the qualifications or training provided for the employees? How can the agency properly match my loved one’s needs to the right caregiver? Cost and payment options?
The Chapter’s social workers can guide the families to the right resources within and outside of our organization. Some families simply cannot afford in-home care and that’s why we have a grant program to help supplement the high costs.
How does home care benefit caregivers of people with ALS?
As the disease progresses, a person with ALS will require more help and eventually may not be able to do anything for themselves. It is simply not possible to give your loved one 100% attention around the clock. Hiring in-home care allows caregivers to take breaks and tend to their own well-being. This can help prevent burnout and also enhance the quality of care that is provided for your loved one.