Caring for the Caregivers

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. – 2 Corinthians 1:3-4

Jane Goff remembers when she noticed the first subtle signs that her mother was affected by Alzheimer’s. Her mom was suddenly forgetting the little things, like the details of cooking dinner. “Mama was a good cook, but she wasn’t quite together with everything in the kitchen; I noticed little things like that,” she recalls.

That was several years before Jane’s mom got her “official” diagnosis of Alzheimer’s. A progressive disease, Alzheimer’s cruelly attacks a person’s foundational dignity by causing forgetfulness, changes in thinking, behavior and, eventually, death. As her condition worsened, Jane’s mom would even fail to even recognize her own child. She passed away peacefully in 2007; more than 16 years after her family began to notice symptoms.

According to the Alzheimer’s Association (www.alz.org), Alzheimer’s is the sixth leading cause of death in the United States. Researchers are struggling to understand the disease, its causes and possible cure, with current research focusing on a buildup of microscopic proteins – plaque — in brain cells, which sever connections between cells and lead to shrinkage of brain tissue.

But perhaps one of the most difficult aspects of Alzheimer’s is the toll it takes on caregivers, as they try to provide support for a loved one who is gradually losing his or her grasp on reality. Often, the patient and caregivers try to deny the disease or its effects and hide it from others. “She was real good at covering it up,” Jane notes about her mom. “For years, only her really close friends really knew what was going on. I realized Daddy didn’t understand the disease and I tried to get some information for him.”

Seeking some answers to help her father, Jane and her husband Bob (whose own mother was also being affected by Alzheimer’s), reached out to Broadmoor’s staff for advice. Looking around Broadmoor, they began to notice fellow members needing support as well. “I thought maybe we need to do something in our church that people wouldn’t go somewhere else for,” she recalls. So, in September 2004, they organized the first meeting of an Alzheimer’s support group. It was a tentative start, but soon the group began to gain traction. Working with local advocates and the Alzheimer’s Association of Mississippi, people began to come.

“The Lord would just kind of throw a speaker at us and it was always just what we needed,” she explains. “We would have a topic and I needed that information the next day. For example, one time we had a Christian attorney that worked with elder law. If my Daddy hadn’t heard him, he probably wouldn’t have had the paperwork required for me to provide for his healthcare, finances, and eventually his and his mother’s death.”

There are many such stories to come out of this ministry, with Jane reporting that many people have found God’s providing resources well in advance of when they are needed. One caregiver wrote Jane a poignant email, describing his experience with a group-sponsored program to educate caregivers about the disease. Caring for his wife through her challenges with Alzheimer’s was so challenging that he was at the end of his proverbial rope. “I can’t put my finger on when or what actually clicked in my noggin, but I see [wife’s name] in a totally different way. I had been giving her too much credit for what I thought she should know.”

“Thanks for being there and doing what you do,” the note continued. “She is going downhill faster than I wish to admit and I’m stretched and stressed into territory I didn’t know existed…as you know, it is tough to stand by and watch the world’s slowest fatal train wreck happen before your eyes.”

Jane keeps the email printout as a reminder of the daily toll Alzheimer’s takes on its victims, but also on their loved ones. Often, family members just don’t understand what’s going on and denial is common. Well-meaning loved ones will often “swoop in”, give advice and “swoop out”, sometimes leaving the caregiver in worse shape than before.

The risk for caregivers is very real. The Alzheimer’s Association reports that, in 2013, Alzheimer’s and dementia caregivers had $9.3 billion in additional health care costs of their own. Almost a third reported experiencing depression.

It’s clear that the help they’re receiving at the monthly meetings is critical to their own physical, mental and spiritual health. More than 350 caregivers have attended the Alzheimer’s support group during the past 10 years, often coming from outside the Broadmoor family. Always, they find a warm welcome. “Sometimes people will come in and they’ll cry,” Bob notes. “The next month, they’re putting their arms around somebody else who needs it.”

One cruel aspect of Alzheimer’s is that the disease is progressive and will not get better. But the progression is often unpredictable, with patients often experiencing periods of lucidity, followed by a return of severe symptoms. “They need to understand what they’re dealing with,” notes Jane. “They’ve got to know what’s coming and to understand this will not get better.”

“Someone in the family is always in denial,” adds Bob, “like it’s going to go away. And sometimes the spouse will try to cover up for the other spouse. The children really don’t know what’s going on.”

Caregivers find it a welcome respite from their stressful jobs and often are trying to balance work with their caregiver responsibilities. But despite the pressure of dealing with their loved one’s decline, group sessions aren’t always gloom-and-doom. There is hope and even laughter. “You’ve got to find something funny, or you’ll cry,” Bob notes.

“I personally can’t stress how important it is for us to have a caring church that provides a location, staff to send our postcards, information included in our publications, and assistance with some electronic media. We couldn’t do it without all of their help,” Jane notes.

The group meets on the first Monday of each month at 6:00 p.m. (except December). For more information, call the church office at (601) 898-2345.

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