Alzheimer’s support group helps caregivers
Alzheimer’s disease is a devastating affliction suffered by many people. Their families and friends also suffer as they watch their loved ones lose their mental capacity.
One area woman has developed a support group that tries to help teach people about the disease and help them cope with its effects on those dearest to them.
Gerri Stevens leads the Trinidad Alzheimer’s Support Group, which meets monthly at the Carnegie Public Library at 10 a.m. on the last Wednesday of each month in the downstairs meeting room. The group meets to learn more about the disease, and to meet and help other caregivers. Stevens says she is willing to meet privately with individuals trying to cope with the disease, if they don’t feel comfortable meeting in a public setting. Three of Stevens’ family members, including her mother, suffered from the disease and died from health problems relating to the disease. After her mother died, she says she saw a need to help others learn more about the disease, for their family members and friends, and also other caregivers. She started the support group in 2008 because her own experiences taught her how difficult it can be in acting as a caregiver for someone with Alzheimer’s. She says she feels the more a caregiver learns about the disease, the easier it becomes to help those afflicted.
The disease can affect people in their 40s and 50s, though it typically affects those in their 70s or 80s. It progresses in three stages. The first stage is mild and lasts from two to four years. The second stage is termed moderate and can last from two to ten years. The final and most severe stage typically lasts from one to three years. The stages vary with each individual. Stevens says she wishes she had learned more when her family members began to show symptoms that she did not recognize or understand. She believes that once a caregiver learns about the disease and how it progresses, it helps them to understand what stage of the disease a sufferer is in and the level of care they need at each stage.
“One of my aunts, when she first started showing the signs, none of the family knew what it was,” Stevens says. “She had gone to the beauty shop, which she did, you know, once a week, and she got lost on the way home. She laughed, she thought that was funny. Well, see, a normal person wouldn’t. With Alzheimer’s, if something happens that is not normal, you don’t think of it as not normal. That was the beginning of hers. Then she was cleaning her windows on the outside and she fell. That was probably a year or two later. She lost her balance. She fell, she hit her head, and she had some problems after the fall. She was probably in the early stages.
“I have read that sometimes an injury to the head can escalate it. She was in a nursing home in Kansas for, I would say, 10 years before she passed away. Another aunt had hers happen after a fall, too. Even though they can’t talk back to you in a conversation, they are hearing and they are understanding. This one aunt who I went to see in the nursing home, we went in and it was, you know, my whole family. She was in a wheelchair and she was making motions with her mouth. I looked at her and I said ‘Don’t you have your teeth?’ She was showing me she had her teeth, and she couldn’t talk or make signs or anything. You know, that just hit me. She knew what I said, and she was relating to me. She couldn’t talk but she reacted to what I said.”
There are ways to determine if a person is suffering from Alzheimer’s disease. Under the Affordable Care Act (the health care reform law), Medicare will now pay for an annual wellness visit. This includes the creation of a personalized prevention plan and detection of possible cognitive impairment (dementia). The new benefit began on January 1. In order to determine cognitive impairment, a doctor will conduct an exam and assess an individual’s cognitive function by direct observation, with due consideration of information obtained by way of patient reports, and concerns raised by family members, friends, caretakers or others. An annual wellness visit may be performed by a doctor or other practitioner recognized by Medicare, such as a nurse practitioner, physician assistant, clinical nurse specialist or other health professional, or a team of such medical professionals who are working under the direct supervision of a physician. The information contained in this paragraph is available from the Alzheimer’s Association website at: www.alz.org.
Stevens says that she was living in Colorado and hadn’t read up on the disease when her mother, who was living in Kansas at the time, began to show symptoms of the disease.
“I would talk to her on the phone and it got to the point where I would ask to talk to Dad, and Mom wasn’t always wanting to talk and he wasn’t relating to me what was wrong with her for quite a while. Eventually, I told Dad that he needed to take Mom to the doctor and have her checked. I don’t think that he thought it was that, or wanted to believe it was that. Eventually he did, though she never wanted to go to the doctor. The testing that they do involves a lot of questions and what kind of answers do they give. So the doctor thought she had it, though he didn’t say what stage he thought she was in. I know they put her on medication, but I’m not sure what it was.
“So this went on and I went back there and I could see the deterioration in her. Getting them to leave Kansas and come out here was really tough, because that had always been their home. I brought them out here and they stayed about a month, but then Mom wanted to go home. I told Dad that it wasn’t going to get any better, it is just going to keep getting worse. They came out here permanently after selling the house in 2007. She was probably in the fourth and last stage by then.”
Stevens’ parents moved, first to an assisted living center in Trinidad, then to a nursing home where Stevens’ mom passed away. Stevens says she learned that you should never put down an Alzheimer’s patient. She says she learned from experience that sufferers may think they are still children or young adults, and it’s important to find out where they are mentally.
“Wherever they are, that’s where you go. You go there with them. You talk to them like there is nothing wrong with them. I remember my Mom saying that everything was so hard, and couldn’t understand what she meant. But I think what it meant was that she was having difficulty thinking and putting stuff together and talking. It really is a devastating disease.”
Stevens said the support group is confidential, and offers caregivers a chance to talk with someone who has been through the Alzheimer’s ordeal. Caregivers often don’t get any relief from their heartrending work. The support group offers them that opportunity. Stevens’ phone number is 868-3789. The Alzheimer’s hotline that anyone can call anytime, day or night is: 1-800-272-3900.
Section: General, Medicines, Mental Illness, Pharmacy and Therapeutics
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