Caregivers Share the Burden of Alzheimer’s

Story by Jeannie Stone

Fathers, mothers, wives, husbands, daughters and sons come together every month at Arkansas Hospice Russellville to vent, share, grieve, console and even laugh. The Forget-Me- Nots is a support group for the unsung legions who care for loved ones diagnosed with Alzheimer’s disease. These guardians of society’s frailest citizens are known as caregivers.

November is Alzheimer’s Awareness Month and Karen Bagwell, the group’s facilitator since 2002, encourages caregivers visit the support group. “There is relief in knowing you are not alone in your suffering,” she said.

During a recent meeting, Phyllis Watkins, Executive Director of Alzheimer’s Arkansas, addressed 25 members and hospice volunteers-in-training. Fifteen members attend the monthly support sessions.

Alzheimer’s is the most common form of dementia It was first described by German psychiatrist Alois Alzheimer in 1901. Although it is generally diagnosed in people over the age of 65, early-onset Alzheimer’s can occur much earlier. No two cases are identical.

The terms Alzheimer’s and Dementia are used interchangeably in society but there is a difference. “If you have Alzheimer’s you have Dementia,” Watkins said. “but you may “but you may not have Alzheimer’s if you are diagnosed with Dementia.

“Dementia means severe memory loss which adversely affects your day to day living. 60 to 70 percent of Dementia is caused by Alzheimer’s. There is always a cause to Dementia,” Watkins said.

The cause and progression of Alzheimer’s disease are not well understood. Although research has determined that the disease is marked by plaques and tangles in the brain. According to Watkins, the plaques and tangles resemble a sticky gooey substance which stops the neurons in the brain from sending and receiving messages. “They eventually die for lack of oxygen,” she said.

Because the disease can’t be cured and is degenerative, management of patients is essential. “It’s a scary situation,” Watkins said. “The Centers for Disease Control and Prevention just released statistics listing Alzheimer’s as the sixth leading cause of death in the United States with five million sufferers. In Arkansas alone, over 100,000 persons are diagnosed with the frightening disease.”

“By 2050, it is estimated that there will be 16 million sufferers,” Watkins said as she addressed the Forget-Me-Nots. “By the time we are 55, 10 percent of us will be diagnosed. Look to the person to your right,” she told the participants. “Chances are one of you will have Alzheimer’s by the time you’re 85.”

Alzheimer’s disease places a great burden on caregivers. Pressures include social, psychological, physical and economic elements of the caregiver’s life. Watkins noted, “Alzheimer’s is one of the costliest diseases to society. You caregivers already know that‘s true.”

Sandra Smith, the caregiver for her husband who was diagnosed over six years ago, shared her situation.

“Glenn’s medicine costs $1,700 a month. Medicare paid out about two or three months ago, and now everything’s out of our pocket. We get, maybe, six months out of the yearly allotment, and then we have to start all over again.”

She continued to tell the group about a recent visit with a financial planner.

“We met for estate planning. I wanted to investigate nursing home costs because it‘s just getting so hard. I found out that they will take social security. I would have to cover the rest. The planner told me to plan on $5,000 a month. Nobody is there to help us. When we claim our taxes, there is not even any credit given for taking care of him at home.”

Support group members sympathized with Smith and Watkins said, “I have calls all the time from caregivers who can’t believe Medicaid doesn’t pay for nursing home care. My mother who has Alzheimer’s is $200 above the limit for Medicaid – it might as well be two million.”

She encouraged the caregivers to exhaust all options. Area Agency on Aging offers family assistance funds to help pay for respite care. There is no income eligibility.

Alzheimer’s Arkansas makes small grants available in the sum of $300.

“It is a simple application process,” Watkins said, “and it can be used for in or out of home respite needs, legal expenses, even incontinence supplies.”

The emotional costs of the disease are often crippling. “When I find myself losing my patience with my mother I know I need to get away,” Watkins said. “Unfortunately, we carry baggage. And it’s easy to question, at times, whether your loved one’s behavior is disease related or just them.

“Try to understand,” she continued, “they wake up in a new world every day… don’t know the people around them… they must be scared to death.”

It’s the emotional burden that convinced Bagwell to attend her first support group meeting in 1999. Her grandfather had passed away after a difficult battle with Alzheimer‘s, and she couldn’t shake the enormous feeling of guilt. “I carried the idea in my head that I was an inadequate caregiver,” she said.

Physical fatigue is a common thread in the close-knit group.

Billy Young recounted how hard it was to take the guns out of their home. Her husband, who was a career state trooper, had a vast collection.

“Somebody told us to get the guns out,” she said. “We shouldn’t have done that, though, it killed him,” her daughter Kathy Wasser said.

“You did the right thing,” Watkins said. “During one of those rare lucid moments he might have remembered where the shells were… He might have thought you were an intruder.”

Debra Laughlin, attending the meeting with her father who is caring for her mother, agreed. “My mother woke up in the middle of the night convinced there was a guard in the driveway. She was telling my dad to hurry and get his clothes before the guard found them… convinced they would be killed,” she said.

“I am amazed at how much easier life is if you just let it go,” Watkins said. “I promise you, if you can just let it go it will get better.”

The conversation veered to current medications, the anticipation of an Alzheimer’s vaccine, distraction techniques and ideas for Christmas gifts. There was comfort in the faces and the voices of fellow travelers on a similar path.

“I’ve attended a lot of funerals for the caregivers who died before the patients,” Watkins said. “This week, take care of yourselves.”

“I’d just like to say that this group is like family to me,“ Smith said. I appreciate the calls we make to check on each other. That means everything to me.”

“One of the things I miss the most is not having my husband to talk to,” Young said wistfully. “That’s why you’re with us,”

Bagwell said. “After we cry together, we’ll help you remember how to laugh.

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