A conversation about the importance of caregivers – and the lack of them

When Ashlyn Vuicich was a child she was rarely seen without a bright wide smile. You know, that infectious type of grin that lights a whole room up. 

All of the kids adored her, the teachers, too. She was always so sweet, kind and caring that it’s hard to imagine her having a care in the world. While other kids were crying and complaining and whining, not Ashlyn, despite the fact that she had Cerebral Palsy and was entirely wheelchair bound.

“I didn’t really have to worry about getting taken care of as a kid, so that’s one thing I do miss about being a kid is not having to worry about that,” she said with a touch of despair in her voice. “I always knew I was different, and it was really hard to understand as a kid because I didn’t have the mental capacity to understand why I was different, but I still had really good friends and they didnt treat me any differently.”

She had a lot of support from family growing up: “My life was so much easier in that aspect, so now, going on my own has been really hard because I have to pay my own bills with only social security. And trying to find caregivers, and finding a good one is hard, who can keep up the job in the way they’re supposed to. It’s just so hard to rely on somebody for every little thing,” she said.

Admittedly, in her 21 years, she has had to contend with challenges that most of us don’t give a second thought to.

“Going to the bathroom by yourself, or getting a drink of water, wanting to go out for a drive, whenever you wanna do anything it has to be with somebody. It’s like I’m not my own person ever 'cause I’m always afraid if I don’t find someone I’ll be stuck in my bed. It’s really hard and stressful,” she said. “I’ve tried to go to assisted living, but they either don’t have any rooms for medicaid or they can’t assist with my level of care because apparently it’s too much.”

If there are no services or facilities available she would be reliant on family or friends to assist. She happens to be in that situation presently. Her father is battling an illness and her mother lives out of state making the options practically nonexistent. 

In the past couple years she has gone through approximately 20 different caregivers. The company she goes through only pays $12.40 an hour. The resources are extremely limited, consisting of assisted living facilities and group homes, which she confesses are a last resort. 

“I wanna be in an environment that anyone my age would wanna be in,” she said.

She admits that it’s incredibly challenging to find any residential care facility that takes Medicaid, therefore, most options are private pay. Additionally, they experience similar issues that she’s encountering. Specifically, a lack of health care workers. “You either have to be rich or old, or you’re kinda screwed,” she said.

Understandably, her mental health suffers. 

“It affects me very much. It sent me through a very dark spiral about a month ago where I just kinda wondered what the point of my life was. If I’m always gonna have to rely on someone, and if I can’t, then I’m pretty much useless. I just wanna feel like my own person. I wanna have the independence that I deserve. The way that caregivers have treated me in the past, it’s hard to maintain a stable life. It’s hard going from caregiver to caregiver, or trying to find a facility, nothing is stable and that’s really hard for my mental health,” she said. “It’s kind of hard too, 'cause like, without somebody I’m just there. I’m not really able to do anything and that’s really hard to accept.”

The “dark time” that she’s referring to led her to the emergency room. From there, as is standard procedure, she would either be released or sent to a mental health facility. They sent her to Montana State Hospital at Warm Springs. 

“They put me in Warm Springs and that’s not where I needed to be. I needed to be in a place that focused on mental health and not mental disorders. I was put with people that had schizophrenia and other issues. I couldn’t really focus on my mental health when I was there,” she said.

After a short stay at the Springs, she was discharged back into her original situation, living at Hearthstone with no personal caregiver. However, true to her fierce fighting spirit, she’s hopeful for the future. 

“My plan is to eventually find a facility that can accept me in a Medicaid room and that can handle my level of care, and then go from there when I get stable. Then I can go to online school while I’m there. Baby steps,” she said.

There are a handful of facilities equipped to provide what she needs, physically and emotionally, but as she mentioned, they’re either full or private pay.

“It is really hard to find caregivers but like if I do find one they’re either taking advantage of me, not doing the job that they need to be, or not just great workers,” she said.

Specifically, her past experiences include caregivers asking her for money – which is obviously against the rules of employment. 

“Basically, telling me what they’re gonna do even though I’m their employer. They run the show, even when it’s my care. They take advantage of the fact that I need them to take care of me. So they can use that at their disposal, if that makes sense,” she said.

Ashlyn explained the main reason why it’s so important for people to be caregivers. 

“Because it gives me the life that I deserve to live because I can’t do it on my own. And it makes sure that I’m well taken care of and I just get to be a person. If people go into caregiving for the money then they’re in it for the wrong reasons. You have to have a good heart to do it,” she said.

To apply they would first talk to her then she would set them up  through Ability Montana in Butte. There is a basic background check. She is currently without a caregiver and is hopeful that someone will come forward.

“I just want to get my story out there to help others because I know I’m not the only one in this situation,” she continued, “I just wish there were more resources for people like me who are disabled and aren’t able to afford a decent place to live, and how we literally have the bare minimum. I just don’t think it’s fair for me, or anyone like me, to have that just because of something I can’t control. There should be better resources where we could actually live a fulfilling life.”