Perhaps one of the most difficult roles that loved-ones take on is that of a fulltime caregiver when they usually have a full slate of responsibilities of their own.
Earlene Weathersby, 69, and her two siblings, Evelyn Lee, 72, and her late brother, Arnett Thomas took turns taking care of their mom for seven years before their mom went into hospice care.
An email from a friend gave Weathersby of St. Louis the message she needed to become a better caregiver for her mother, Elizabeth Thomas, 91, who has Alzheimer’s disease.
The email told her about Memory Care Home Solutions, based in St. Louis. Its program is designed specifically to reduce stress on the caregiver and to provide more productive time at home for the person with memory loss.
“They provided contacts, telling us what’s there and when they have sessions for Alzheimer’s caregivers and literature on Alzheimer’s. They did have a home consultation- it turned out to be very helpful and informative and also they pointed out you have to think about caring for yourself – something you don’t tend to think about,” Weathersby said.
Lisa Baron, J.D. is the executive director of MCHS. She founded the organization after her own personal experience with a loved one with Alzheimer’s to teach others how to master the role as a caregiver while managing dementia at home.
“It’s modeled after Parents As Teachers—they go into homes to train caregivers and give recommendations,” Baron said.
“They wanted to be sure that we had equipment that was needed and services for her, like Depends. The state offered those and they sent us Depends and pads for the beds that were terrific,” Weathersby said.
“They let you know the resources that are out there, like Depends or Ensure and she (Lisa Baron) sent a spoon to me too that might be easier for mother to use when she is eating.”
The charge for the service is $1,500. Baron said they ask people to pay only $150.
“No one is turned down for inability to pay. Scholarships are available,” Baron said.
Washington University is tracking outcomes as the organization seeks to delay institutionalization of its clients with Alzheimer’s and dementia.
“They still follow up with us. When they come in they want to know what changes, if we are satisfied with them. She sent me a letter – so I would call her. It was hard getting me. They always tried to do follow-ups that kind of amazed me that they could keep up with their follow-ups,” Weathersby said.
“When you know there is always someone you can call when you have a problem or have a question. I had a problem with a home health care person—it was good to have someone tell you to take the next step further and find another agency. You really don’t know what to do when you are trying to figure out everything else you have to do.”
Memory Care Home Solutions was formed in 2002 through a grant from the Missouri Foundation for Health. It started receiving state funding this year.
Baron said too often caregivers wait until they are at their wits end before they reach out to help, adding that people need to call much earlier in the disease process.
Weathersby agrees.
“It was needed. It was so helpful and I didn’t know it was out there. And I think of other caregivers that don’t know it’s out there and it could help you a lot, financially and emotionally,” Weathersby said.
As Weathersby and her siblings pulled together and found what they needed to take care of their mother in her waning years, unknowing they were also leading by example.
“We’ve had the younger ones in the family make statements that we are teaching them how to care for us, and I never thought about that,” Weathersby said. “You are doing what needed to be done, but there were others, there may be outside the family.” You just never know who is observing you.”
