Connections with friends, family and other Alzheimer’s caregivers can help
Some caregivers may lose patience with being asked the same question 10 times because their loved one with Alzheimer’s can’t remember the answer. In addition to maintaining friendships and good family relationships, staying connected with other caregivers can help caregivers stay strong and patient.
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Originally, she wasn’t going to download a photo of herself to her page on the popular dating website. If men genuinely wanted to get to know her, based on her profile, she reckoned a picture didn’t matter.
Eventually, she relented and posted a photo – a beautiful one, which John printed off in 2006, two and a half years after searching. He kept that print-off, with her name scribbled in red ink at the top of the page. John fished it from a drawer in the bedroom and showed it to us.
“It was a godsend,” John said.
They were married by 2007.
“We agreed to be bound in sickness and in health,” John said. “After all, that’s life, and we are committed for life, here and forever.”
By 2008, the Broken Arrow newlyweds’ vows would become more meaningful.
“I’d notice occasionally she’d repeat herself,” John said. “I was just chalking it up to stress.”
Lois is in the early stages of Alzheimer’s, signs for which may include some memory loss, impaired ability to learn new information and small personality changes, among others.
John is Lois’ primary caregiver – one of an estimated 214,000 unpaid caregivers in Oklahoma in 2012, according to 2012 figures from the Oklahoma chapter of the Alzheimer’s Association.
The association provides family care consultations, art programs, a teen camp for young caregivers, educational seminars and conferences, and – a boon for John – support groups.
“Everyone who has a relationship with a person with dementia needs to contact the association,” John said. “The help in support and resources is beyond belief.
“And it’s free,” he added. “I would not be as open or as able to handle the anticipatory grief of losing my soulmate gift from God without knowing the Lord and having the Alzheimer’s Association as a resource.”
According to the association’s 2013 Alzheimer’s Disease Facts and Figures, more than 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of care-giving as high or very high; more than one-third report symptoms of depression. Due to the physical and emotional toll of care-giving, Alzheimer’s and dementia caregivers had $9.1 billion in additional health-care costs of their own in 2012.
“Caregiving takes a toll on a caregiver both physically and emotionally,” explained Ronda Roberts, programs manager for the association’s Oklahoma chapter. “Often they grieve the loss of their companion, friend or partner.
Folks in rural communities and those with limited finances don’t have access to many programs that would ease their load caring for their loved one, Roberts said.
“Caregivers have normal day-to-day responsibilities just like the rest of us,” she continued. “They work, pay the bills, go grocery shopping, take care of their children” – all in combination with the responsibility of physically taking care of another adult.
“They tie their shoes, brush their teeth, make sure they eat, anything they need,” Roberts said.
Midstage nuances
Ames Righter can shower, shave and brush his teeth, but his wife, Jean, has to be right there with him.
Most mornings, she’s out of bed between 5 and 5:30, while Ames sleeps until 8 a.m. It’s her alone time, during which she’ll usually take a stroll, often with Willie, the Righters’ Bichon-toy poodle mix.
Then, it’s back home to feed the animals and make breakfast for herself and Ames.
“It’s very mundane,” she said with a laugh.
Ames is in a more advanced stage of Alzheimer’s than Lois – “midstage,” Jean said, having noticed Ames putting words in wrong places in his sentences. Three years ago, six after they had married, Ames was diagnosed with Alzheimer’s.
“He’s a very articulate, intelligent man, well-read,” Jean told us while Ames played solitaire on the computer. “He’s very outgoing, loves to talk, loves to be with people.”
The day we spoke to Jean, word came that a family member had died.
“Even today, in the sad state he’s in, he would say, ‘Who’s coming to visit today?’ or ‘Who’s coming to dinner?’ “
As time passes, Jean has realized she’s a stronger person than she thought with more patience than she knew she had.
“I’m OK now,” she said she’s told herself in the past few months. “It took a while to get here, and there are a lot of stages a person goes through – anger, some frustration. But, all of a sudden, I’m reconciled to who I am and where I am. … We take it day by day, and we’re doing OK.”
Some caregivers may lose patience with being asked the same question 10 times because their loved one with Alzheimer’s can’t remember the answer.
“You just need to take all that in your stride and recognize that this is a disease,” she said.
The Alzheimer’s Association has been “wonderful” help.
“I’ve made such lovely friends,” Jean said. “Something good comes out of everything, and that’s one of the good things that has happened.”
Staying connected is a boon for caregivers.
“When this is going on, you’ve lost your partner,” Jean said. “You don’t have a conversation. There’s not conversation at all.”
The disconnect is common with caregivers, and isolation can be a risk.
That’s why it’s important to maintain friendships and good family relationships, Jean said. “They really keep you bolstered.”
Beyond that, she recommends finding an activity you love to do and make enough time to do it. For example, she loves being outside, so she tends to flowers and a garden.
“I give almost all the vegetables away, and I just love doing that,” she said. “And that keeps me sane.”
Early onset
Lois knows the importance of a creative outlet.
She has to be doing something with her hands, she said. The day we visited, she showed us the bathroom she’d redone, including an old wooden baseball bat she repurposed as a towel rack.
Plus, she still maintains a business, Two Ladies with a Plan, with her best friend and fellow interior designer, Gayle Kauffman. Together, they refurbished Clarehouse, which provides quality end-of-life care and access to hospice services to people in need.
That’s not the only way Lois helps others, though. Before she was even diagnosed with Alzheimer’s, she responded to a newspaper advertisement John found about a drug trial for Alzheimer’s.
“I told them I’d do it for free,” Lois said, going along with the trial for 36 months until it was canceled. Currently, she’s on a new, 78-week drug trial.
In the meantime, she wants to see more support groups – and not just for caregivers.
“They have support for people like John, but what about me?” she wondered. Hopefully, one or two from his support group will bring spouses with early onset to the next meeting. Maybe that will start a new group.
Mostly, she’s not depressed, doesn’t get down, she said. But sometimes she asks, “Why me?”
Then, she started paraphrasing the Kris Krisstofferson song, “Why Me”:
“What have I ever done / to deserve even one of the blessings I’ve known,” she said.
Acknowledging those blessings is one of the reasons she does the drug trials, John said – to help others.
“If they can’t fix me, maybe they can fix the next person,” Lois said.
http://www.optimumseniorcare.com/services/alzheimerscare.php