After a series of stRokes, Mark struggles to make ends meet.
“I get $646 in Social Security, SSI and I get $140 in SNAP benefits." Mark says that even with government assistance, his monthly medical co-pays amount to about $30 - $40 a month. Mark died April 6, 2017.
Even in death Mark couldn’t escape poverty. Within a week, friends are distraught and crying, because they’ve been unable to raise $1,000 to obtain Mark’s ashes from where they are being held by the Adams County coroner. According to the Adams County coroner, he holds the ashes of the indigent until friends or family can come up with the $1000 to reimburse the county for the $800 the county pays the funeral home, and the $200 the county pays the crematorium. The coroner says he will hold the ashes for up to six months. During an interview in April, 2017, Adams County Coroner Jim Keller said that if the surviving family doesn’t pay the $1,000, he will dispose of the ashes in an unmarked grave in a cemetery at his discretion, and he won’t disclose the location of the ashes to the family.
February 2017: Mark maneuvers his wheelchair on the street to avoid sidewalks in disrepair. “I’m currently in a handicap accessible apartment which is ideal for my wheelchair and me. But, I also need to get to meetings, to get to the soup kitchen, and I need to get to the pantries, and that requires me to go out with my chair, which in itself has been an issue. I've had to have two complete sets of tires on my wheelchair replaced. The chair is just like a car to me. It cost me just about what a car would cost except for I don't have gas I got electricity. That in itself is 80 to 120 dollars a month.”
Mark says maneuvering some of the Quincy sidewalks isn’t ideal. “They got potholes on the sidewalks that if you hit one of them with these tires it's gonna break 'em. I can't get around without causing damage to my chair. Without this chair, I couldn't do none of what I do.”
Mark talks about wheelchair inaccessibility issues. “It’s demeaning, you know? I’m close to uptown and I like to shop. I don’t necessarily like to buy things but I like to keep track of trends. I can’t even get in the store to see what they got. There’s a lot of buildings I would like to get into but can’t.”
February 2017: Mark’s personal assistant gives him a washcloth bath in bed.
Mark receives help from the West Central Illinois Center for Independent Living. He said they helped him find wheelchair accessible housing and provided for a personal assistant. “They helped me with just about everything,” Mark said. “The bedding, dishes, the electric wheelchair - everything except the washer and dryer. I didn't have no place to go that was handicap accessible is what it amounted to.” Mark says there’s no way he could have paid the first and last months rent on his own elsewhere.
Mark struggles with making ends meet. “I get $646 in Social Security, SSI and I get $140 in SNAP benefits. By the time I pay my bills and pay my copays for medicine that leaves me on an average of $30 to $40 for personal expenses. You know, I have to buy laundry detergent and cosmetics, shampoo and stuff like that. I mean by the time of mid month, I have no spending money at all. As far as the SNAP benefits it basically feeds me breakfast and I go to the soup kitchen at the Horizons Pantry on a daily basis for lunch. That's pretty much my eating. I go to the bread line. I go to a lot of pantries, you know, because I just try to keep what I should have or need and try to make it through the month. That's pretty much it. It's not something I'm used to.”
Mark has difficulties stretching his meager income through the end of the month. “I currently take 14 different pills. I take two different kinds of insulin. I have to pay a copay on the medicines. Right now they’re running me more than $115 a month plus doctor's visits and specialists. There's never enough money no matter how hard I try. It's depressing.”
“I used to be an electrician. I used to make what I make now in a week. I don't know how to deal with it sometimes. It's depressing. Super depressing. “
February 2017: Mark relies on a lift for even basic things like maneuvering on and off of the toilet. “I have a sit and stand lift that allows my personal assistants to lift me up and set me on my wheelchair, in my recliner, or to put me on or take me off the toilet.” Mark says not having the lift would mean the fire department would have to come to pick him up even if he needed to adjust his position in bed. “I call my sit and stand ’Sarah’ because she is the love of my life and without her my life would be really devastating. You know, not being able to get out of bed, I couldn’t live like that.”
February 2017: After a morning shower Mark’s personal assistant brushes his hair. Mark relies greatly on his personal assistant to help him with the basics of getting in and out of bed, and in and out of his wheelchair. When Mark’s washing machine broke, he couldn’t afford to purchase another, so his personal assistant began bringing his clothes home to wash along with the household laundry she does for her family of five. “Well, I have a PA that came with me from the nursing home. She makes sure my bills get paid, she does my shopping and now that my washing machine has broken down she takes my laundry home and does it.”
March 2017: Mark receives a hug from a friend who came by to see him in his apartment about a week before he died of a heart attack. Mark died April 6, 2017, just six days before his birthday. Days later, the family is selling Mark’s belongings to raise money for his burial expenses, but a basic funeral service is out of their price range.