When caring for a parent, the hardest thing is knowing when it’s time to ask for help. That’s exactly what Michelle Schafer faced over the 14 years her mom dealt with her diagnosis of early onset dementia until her death, at age 72, in December 2017.
When Schafer’s mom was first diagnosed — she was just 58 at the time — she was able to keep living in the house in Virginia Beach, Virginia where Schafer grew up provided someone was there to assist her, first for a few hours per day and, before long, all the time.
Two years into that arrangement, Schafer and her siblings realized she needed to live closer to family. With her house sold, the family relocated Schafer’s mom to a senior living complex nearby.
“My mom was not happy the day we told her she had to go into a home and needed full time care,” Schafer says. “She cried in my arms and was so worried we'd forget about her and neglect her.”
It made sense that Schafer’s mom was concerned.
“My mom was a nurse for 40 years and then worked in managed care in nursing homes during the last part of her career,” Schafer says. “She saw firsthand what happened at those places. She dealt with the families who were upset about the lack of care for their loved ones. It was tough.”
Schafer’s mom was first put in a nursing home that cost $8,000 a month. The next facility was way less expensive — about $2,800 month — but Schafer’s mom would have to share a room.
The first eight months at that nursing home went alright and Schafer was able to handle aspects of her care such as buying her clothes, managing the paid-for help (outside of the nursing home staff), dentist appointments, haircuts and coloring, etc. One of Schafer’s brothers helped by handling the bills and finances.
Then, Schafer’s mom fell, which led to a cascade of problems, including a seizure and her being relegating to a wheelchair.
“When I’d visit her, I came to the realization that my mom was turning into a zombie,” she says. “She was tired, unresponsive, and stopped talking.”
Then, at a meeting with a new primary care physician, Schafer learned that some of the medications her mom was on were making her less responsive. The doctor agreed to slowly take her off those medications and Schafer’s mom started to improve.
“I was so angry,” she says. “I realized the nursing home just didn’t want to deal with her and the other patients in the nursing home. The staff ratios were also really bad — about two to three ‘med techs’ for 40 patients.”
The Caregiving Turning Point
One day, Schafer sat down with the visiting physician who saw patients at the nursing home every week and he told her that her mom, who had lost 15 pounds by that point, didn’t have much time left and should consider hospice.
“That didn’t seem right to me and that’s when I knew she needed more care,” Schafer says. “I realized my mom wasn’t being watched. I found her stuck in her wheelchair once in another person’s closet. Who knows how long she was there trying to move out of the closet?”
Schafer learned a lot about healthcare from this experience.
“You have to be an advocate for those you love and ask directly for what you want, especially with nurses, doctors, and paid care givers,” she says. “I was always very up front about the type of care I wanted for my mom. I wanted the best and because the nursing home wasn’t cutting it, I made sure everyone knew. I told my brothers, friends, and others how frustrated I was with her lack of care.”
She even used social media to vent.
“I posted some of my feelings on Facebook and it was good to have some consolation from time to time with friends reassuring me that I was doing everything possible to give her better care,” she says. “I also made mental lists and wrote things down that I believed were wrong and either I told the med techs or my older brother did. I also kept the record of her medications and asked to see her charts to see what they were giving her. And I asked them what and why they were giving her meds when I was there and saw them dispatch the drugs to patients.”
Questioning everything helped Schafer gain a sense of control — and ease her concerns.
“I’d ask everything from when my mom had her last shower to what she ate for lunch to her medications and how she was sleeping,” she says. “I know for a fact that I probably irritated the staff from time to time. I just know my mother would have done the same for me, if the tables were turned.”
Ultimately, Schafer realized she would need to pay a caregiver to come in two hours a day during lunch or dinner to feed her mom.
“I needed to know she was at least getting one solid meal in a day,” she says. “Things went well at first but it was getting costly — this caregiver charged another $1,200 per month.”
Still, she and her brothers continued paying outside caregivers to come into the nursing home and take care of her mom. Then, her mom had another major seizure and this signaled that it was then truly time for hospice to come in.
Luckily, during these last days, Schafer feels that her mom finally got the care she deserved.
“I rehired the company I had used before for my mom and the caregiver was so good to my mom and our family and was there the night she passed away,” Schafer says.
Ironically, the nursing home finally stepped up care during the last few days of Schafer’s mom’s life.
“The staff changed her, made her comfortable, gave her pain meds, and checked on my family,” Schafer says. “One staffer prayed with us. I wish they had been that good to her the whole time. It was hard on me as my mom was my best friend. I had many days that I cried and stressed over her lack of care. I still wonder if I did enough.”
This post was written by Lambeth Hochwald.