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Alzheimer’s affects caregivers as well as patients

Posted on Wednesday, January 30, 2013 at 6:07 am

Montross resident Norris Williams is known as “Red” to friends.

By Nicholas Vandeloecht

In America, 5.4 million people are living with Alzheimer’s disease.
And with the baby boomers inching towards retirement age, that number is expected to rise.
To make matters worse, Alzheimer’s not only weighs on those who have it, but the loved ones who take care of them. In turn, the caregivers themselves have few people to seek out for help.
That’s where the Alzheimer’s Caregivers’ Support Group comes into play.
Located at The Orchard, the Warsaw support group serves as an outlet where caregivers from across the region can safely talk about their situations and relate to one another through stories, research and advice.
“They get tips and techniques from the other people dealing with this on how to deal with the many, many issues and behavioral challenges that you get with a person with dementia,” said Elllie Galloway, the program coordinator for the Alzheimer’s Caregiver Support Groups throughout the ten counties on the Northern Neck and Middle Peninsulas.
On Jan. 18, newcomer Jo Pierce from Montross, King and Queen County resident Ginger Weeden and Martie Allman, the household coordinator for The Orchard’s dementia unit, sat down to hold an informal session.
Weeden shared her feelings as a caregiver for her mother who has Alzheimer’s.
“It’s a never-ending story…my stomach burns all the time, my head hurts all the time and I don’t sleep,” she shared. “It’s not supposed to be like that.”
Weeden’s mother now lives in respite care at The Orchard.
Although that method of care is an option, Galloway said it’s one that caregivers are hesitant to accept.
Cindy Franklin, who volunteers at The Orchard and has both parents living in respite care, agreed.
“[My parents] lived in their home all their life, so to get them to move down here…the guilt is very difficult,” she said. “You took them out of their environment, even though you knew that was the safest thing for them.”
Weeden confirmed that it wasn’t her first choice.
“The only reason why mom is [at the Orchard] is because there was no one else,” Weeden said, adding that her sister had committed suicide in the same house as her mother and all other family members moved away.
“They left, and left me holding the bag,” Weeden continued. “But I chose to take care of her because I love her…she’s my mother.”
Weeden also said her mother makes her feel ashamed for taking her out of her home and placing her in respite care.
Allman, however, assured Weeden that she was doing everything she could as a caregiver.
“I think you put a lot of pressure on yourself,” Allman told Weeden. “You have to say to her, ‘Mom, this hurts me. But I believe I’m doing what is best for you.’”
Director of Marketing Jill White, who resurrected the Warsaw group two years ago, said the meetings were important in helping the caregiver become the “daughter” or the “brother” to the affected loved one again.
“Becoming a caregiver really demolishes the family dynamics,” White noted. “It really does have a negative impact on the relationship within the family.”
Pierce said she noticed a change of roles between Weeden and her mother.
“What’s giving you turmoil is the fact you still want a mom, and you’ve now got a child,” Pierce told Weeden.
Pierce, a nurse-turned-caretaker, described the stormy relationship between her 11-year-old daughter, and her father ailing with dementia.
“He nitpicks on her and she barks back at him,” Pierce said, adding that at dinnertime she would sit them at opposite ends of the table to keep them out of “smacking distance.”
“I’ve referred to it for four years now as I’ve got two kids,” she continued. “They fight like cats and dogs…but they love each other dearly.”
Allman, however, helped both members recognize that “at their core,” their loved one was still the parent.
“No matter how bad they get, that’s not going to change their spirit,” Allman said. “They still gave [life] to you.”
In a separate interview, Franklin and JoAnne Brown, another Orchard volunteer who manages paid caregiver support for her independent father with age-related memory loss, commented on the role reversal in terms of responsibilities.
“It’s very hard to tell your parents, ‘You’re going to do this,’ even though it’s the right thing for them to do,” said Franklin.
“It’s not their fault,” Brown said of those with dementia, adding that caregivers needed to remember “not to become condescending, angry or abrupt with them.”
In addition to learning patience, the members of the informal session said there was a need for greater education among caregivers and outsiders regarding Alzheimer’s.
Pierce related the story of a woman she knew who provided little proper care for her 89-year-old mother and left her to her own devices.
As a nurse, Pierce attended to the mother when she choked on a piece of hot dog.
She said the daughter had “slapped down” two hot dogs and a piece of bread on a table next to her in an effort to feed her.
Allman said that The Orchard needed a bigger presence in the community because she didn’t see dementia going away any time soon.
“It takes people like you,” Allman said to Pierce. “You know what your neighbor is going through.”
Galloway said that the program hosts educational seminars and guest speakers twice a year, as well as “social engagements” that give caregivers and their loved ones time out together.
“We might do a picnic somewhere or have it in a restaurant,” said Galloway. “It is amazing to me that they are so much brighter just being out and talking to people and being able to not have to deal with the guilt of leaving their loved one at home.”
Brown said she volunteers at the Orchard not only to help care for her parents, but to also tend to other families’ loved ones with Alzheimer’s and dementia. She said she does so to give back to the community and support the elderly as best she can.
Franklin agreed, saying that everyone needs an advocate.
“If something isn’t right, most of the time the elderly don’t speak up for themselves and you can speak up for them and be their voice,” Franklin said.
Galloway admitted that any caretaker for someone with Alzheimer’s has a rough journey ahead of him or her.
“We can’t cure the person with Alzheimer’s,” she added. “But what we’re trying to do is make sure that the caregiver doesn’t become a second victim.”
It’s happened before, said Franklin as she related the tragic story of her husband’s aunt and uncle, the latter of whom they discovered had Alzheimer’s.
“His aunt tried to cover it up and all of a sudden she had a massive heart attack,” Franklin said. “If she had told us, we would have worked with her, because I still feel that’s what caused her heart attack.”
Franklin’s words resonated with Brown, who replied that Alzheimer’s “kills two people.”
Franklin stressed that caregivers had no reason to hide their dilemma.
“It’s not something to be ashamed of or to hide,” she emphasized.  “It’s nothing that you can do anything about and you can’t control it.”
In fact, Brown said she experienced a sense of responsibility and pride in caring for her loved one.
“I do it joyfully and willingly,” said Brown, adding that the journey for a caregiver can be interesting.
“There’s a lot of flexibility needed,” Brown continued, adding that an open mind, patience, a sense of humor and understanding from family and friends were all absolutes in completing the journey.
The Orchard group meets the second Tuesday of each month at 10:30 a.m at the Magnolia Manor in Warsaw.  The Kilmarnock group meets every fourth Thursday at Commonwealth Assisted Living.
For more information, call (804)-313-2400 or (804)- 695-9382 or email Jill.white@rivhs.com.
The Alzheimer’s Association also offers facts, tips, articles, the latest research and locations of offices on their website at http://www.alz.org/.