One thing to know about ALS caregivers is that while the role they play is vital for people living with the disease, it is a role no one applied for. “My role as a caregiver, it wasn't planned; I wasn't prepared for it,” said Allison Bulat, a caregiver to her husband Jeff for more than a year before he passed away from ALS. “And in that moment, it changes us, right? Anybody who's been through that knows that. It's like this weird moment where everything behind you looks unfamiliar, and you have no clue how to step forward.”
Allison shared her experiences as a caregiver during a panel discussion this July at ALS Nexus that explored how the ALS community can empower and engage caregivers to help them be successful in the challenging role they have had to take on.
Among the ways the ALS care team can help empower caregivers is to acknowledge that they too are people with needs and that those needs are different from the person living with ALS. “We as caregivers need you too because we are just as terrified, we are just as confused, as disoriented, as overwhelmed, as broken, and we desperately need our person. But guess what? They need us more,” Allison said. “And so, we need you as care providers to put us in the middle circle.”
Jennifer Myhre, a care services manager with the ALS Association, agreed and shared that being intentional about providing caregivers with space to share their thoughts and feelings is important for everyone on the care team.
“Reading the room is a helpful thing. So, when you're interacting with a caregiver, do they appear stressed, distracted? Are they holding back tears?” Jennifer said. “And if that's the case, it seems it's even more important to be finding ways to give that caregiver some attention and an opportunity if they want it to talk.”
Jennifer also reiterated that it’s important for the ALS care team to remember that just as each person with ALS is unique, so too is each caregiver. There are no cookie-cutter solutions for ALS challenges that will work for everyone.
It is also helpful to remember that terms and language that are common in the medical community are not familiar to everyone. “(What) I always try and remember is just simplifying our language, trying to avoid medical jargon and avoiding acronyms,” said Claire MacAdam, a physical therapist at the Sean M. Healey and AMG Center for ALS at Massachusetts General Hospital.
She also reiterated the importance of listening. “I think clinics can be just a huge amount of information. So I think as care providers, we have a tendency to come into the room to see an individual with ALS and their caregivers and their family with almost a checklist,” Claire said. “But we have to make sure it's not just our checklist that's being addressed, that we're asking questions of the individual and the caregiver to make sure we haven't missed anything.”
The amount of information available to caregivers can be overwhelming for people in an already overwhelming situation, so care providers can also empower caregivers by providing customized information for them whenever possible, while also understanding that what the care team might see as the best solution might not always be the best solution for people with ALS, or their caregivers.
“I don't want to be parental and say: ‘Well, now it's time for this or now you have to do that or now you have to get that.’ I don't feel like that's an empowering way to have the conversation as we pick up on items as the patient and the caregiver are sharing with us,” Claire said. “I think (it’s better saying): ‘Can I paint a picture of what options are out there for you? Can I make some recommendations or some suggestions?’”
ALS caregivers come in all shapes and sizes, of all ages, and from all backgrounds. They each bring different life experiences to the role they are thrown into. But one thing they do have in common is that they are all doing the best they can, each and every day. It is up to all of us in the ALS community to support them and empower them as we strive to make ALS livable for everyone, everywhere, until we can cure it.
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