More than 16 million family members and friends provide care to people suffering from Alzheimer’s in the United States. In Oklahoma alone there are 224,000 individuals serving as unpaid caregivers.
November marks the beginning of National Family Caregivers Month, an observance of the time and commitment that caregivers put into looking after loved ones with Alzheimer’s and other diseases.
Short-term memory loss is often one of the most early symptoms of Alzheimer’s, however, as the disease advances through the brain, it leads to more severe symptoms such as mood and behavior changes, disorientation, and difficulty speaking, swallowing, and walking, among other things.
For caregivers, this typically demands 24/7 attention to their loved ones, a task which can be draining and difficult over time.
Around 10 years ago, Southwest Baptist Church Senior Pastor Bruce Kirby said the church began taking notice of the toll Alzheimer’s was taking on families within the church.
As a response, the church began hosting an Alzheimer’s support group, which has now developed into a much larger source of support for caregivers of all backgrounds throughout the local area.
“As a church we host this, but this is not a church run event. This is open to everybody, doesn’t matter what church, we even let Catholics in,” Kirby said with a laugh. “We don’t try to get them to come to our church, that’s not the intent of this. This is to care for people.”
The group meets every first Tuesday of the month, inviting in speakers from various organizations to help members learn how to handle legal matters, such as creating a living will, how to help their loved ones through the disease and simply to learn about the resources available to them.
This month’s speaker was unable to attend the group meeting, but that didn’t stop group members from engaging in stories of their struggles with Alzheimer’s and supporting each other through it all.
While some group members at the November meeting were more seasoned caregivers, others were just starting out. One of the new members brought her husband, who has been diagnosed with Alzheimer’s, with her to the group.
“I’m exhausted,” she said, holding back tears. “He has a lot of hallucinations which are really tough to deal with and I’m trying to learn how to be loving, it’s tough but we’re working on it.”
Another caregiver came up to the woman and wrapped her arms around her. “We’ve all been where you’re at, at the beginning and with all the emotional stuff,” Kirby said, addressing the new member.
Kirby acknowledged how difficult it can be for caregivers to ask for help in the beginning stages of Alzheimer’s. There are many things individuals will come across as caregivers that they’ve never had to deal with before.
For some that’s their spouse or loved one not remembering who they are, for others it’s having to constantly be by their loved ones side so they don’t put themselves in danger by wandering off, among other things.
“I take her by where she was raised at her mother’s house and she’ll say ‘I remember that place, I used to have a lot of fun there.’ And then in a few minutes she’ll have forgotten where she was at again,” one member said, while telling the group of his wife’s struggle with the disease.
However, it’s important to open up and let people in the area help out during this time, Kirby said.
“That’s what our meeting is all about. There will be some things you’re struggling with and somebody else in the group will go ‘Oh we dealt with that and we did this’,” Kirby said. “And if nothing else, just standing there and encouraging and holding on to people.”
One caregiver, whose husband passed away from the disease in January, suggested turning to hospice when in need of relief. “You have a lot of things going on and day-to-day living is hard. Please let somebody come in to help you,” she said. “You can have somebody come in with hospice and they have a little bit more they can do than home health can.”
Others shared tips they’ve learned over the years, such as placing a black mat in front of a door to prevent individuals with Alzheimer’s from wandering out of the house due to disorientation. The black mat appears as a hole to them and they won’t cross it, Kirby said.
Members also heavily emphasized getting legal matters in order prior to an individual’s death, alerting local law enforcement to their loved ones’ condition, and above all else, finding ways to enjoy their time with their loved ones.
“The more they get into the Alzheimer’s stages, the old adage is ‘If they have a good day, you’re going to have a good day’,” Kirby said. However, caregivers also have to remember to take care of themselves, and a part of that is sometimes finding relief through things like local support groups.
“You’ve got to take care of yourself if you’re going to take care of someone else,” Kirby said. “You have to make sure you take care of yourself and get some relief every once and a while.”
On Dec. 3, the local Alzheimer’s support group will meet once again at 10 a.m. at the Southwest Baptist Church, located at 2120 Myall Road. The December meeting will feature a speaker from the Alzheimer’s Association, who will be giving a presentation titled ‘Understanding Alzheimer’s and Dementia’.