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HUBBARD -- As caregivers tend to a loved one dealing with Alzheimer's disease, their well being needs to be supported.
That helps the caregivers not only emotionally but also answers questions during the slow and frustrating deterioration process caused by the disease.
That's where the Alzheimer’s Association can assist caregivers in their day-to-day service. The organization leads the way to end Alzheimer’s and all other dementia through global research, while also focusing on risk reduction, early detection and quality care.
"A family should seek out a support group as soon as they receive a diagnosis so they can properly understand the resources available to them," explained Mary Ertle, program director of the Cleveland Area Chapter and Greater East Ohio Chapter of the Alzheimer's Association.
"Support groups meet attendees where they are in the disease process and provide patients and caregivers the opportunity to learn from others who are going through the same thing," she said.
"The earlier you learn, the more prepared you are on the journey. And, the earlier you receive a diagnosis, the more likely you are to benefit from treatments and drug trials."
EXPERIENCING SYMPTOMS
Kate Ross of Hubbard has taken that advice by attending a support group in Trumbull County and seeking helpful information after becoming her husband's caregiver.
"Doug has not officially been diagnosed with Alzheimer’s," she said. "His memory impairment is still in the mild stages and his neurologist is tracking his functioning."
Sometimes Doug's symptoms lean toward Alzheimer's while other times they present closer to Parkinson's disease.
Despite the lack of an official diagnosis, the Alzheimer’s Association has been "very helpful," Ross said.
Although he wore a helmet during a June 2011 bicycle accident, Doug experienced severe head trauma. He recovered, but Ross noticed a reduction in his stress tolerance and some short-term memory problems.
Then, in the summer of 2016, he was in a motorcycle accident.
Fortunately, he wore a helmet then, too, and was not diagnosed with head trauma but did suffer broken ribs and a collapsed lung. Still, after this second accident more memory difficulties and issues with problem-solving skills became noticeable.
Rather than resist, Doug realized he was having issues and was convinced to make an appointment to see a neurologist three years ago at the Cleveland Clinic.
"The results of the first testing indicated some glitches, but overall, fairly normal functioning," Ross said. "The problem with standardized testing is that it does not take into consideration base functioning."
She described her husband as "brilliant" and "smart," but over successive testing he's started to fall into the category of mild impairment.
Ross recalled when Doug used their dog's food bowl when he made chicken broth.
The large bowls for the task were right below the strainer - which he found and used - but he insisted he couldn't find them.
Now as a caregiver, Ross has found ways to make life easier for Doug.
That means checking for dog toys on the floor so Doug doesn't trip, or making sure the correct size pot for canned soup is located in the front of the cupboard. Otherwise, Doug may use a pot too small and the soup will boil over.
Doug's symptoms led to his retirement after nearly 40 years testing computer programs with the federal government. Ross stopped working prior to Doug’s health issues.
"It’s been very handy to not be required to be out of the house for a full-time job," she said.
While he enjoys some retirement activities, Doug has also been forced to reduce his involvement. He still rides a motorcycle, but it's been limited.
"Doug has a friend with whom he rides. That friend lost his father to Parkinson's disease. So, he’s familiar with dementia-type disorder," Ross said.
Once upon a time, Doug and that friend went for weeklong rides, camping and traveling dirt roads.
Prior to each trip, Doug planned routes, ordered food and supplies and made reservations along the way.
Roles have changed, Ross said.
"The past two-three years the friend has done all the planning and has continually scaled back the caliber of the trips. The last trip involved the friend finding a cabin outside of Titusville, Pennsylvania," she said.
The motorcycles were transported via trailer to the cabin and the ride was a simple one, about 6 hours.
His friend has observed changes in Doug's ability to ride, Ross said.
FINDING SUPPORT
Through an internet search, Ross found an Alzheimer's Association support group in Trumbull County that meets from 7 p.m. to 8 p.m. the second Tuesday of the month at the Howland United Methodist Church, 730 Howland Wilson Rd. NE, Warren.
There's been benefit from attending, Ross said.
"Listening to the stories of the other members and hearing the advice is helpful, and so is telling my stories and also receiving advice," she said.
Ross learned at a meeting that, as former members of the military, the Veterans Administration has a program to pay family members for in-home support. "We are not yet at that stage of impairment, but it is good to know that it is available."
She added, "The Alzheimer’s Association has a lot of helpful advice, but more importantly, the group helps to make connections with other caregivers so I don’t feel so alone. A basic fact of memory impairment is that you lose your loved one in tiny little bits in unexpected ways and at unexpected times. It is a weird kind of grief."
"I was having trouble convincing my husband that it’s time to stop driving cars and to stop riding motorcycles. We rarely argue, but we’d been arguing about that," she said. "So, I called and they were able to give helpful advice on things that I can do."
She used the technique of "therapeutic lying," or telling lies to a person with dementia’s best interest. It's not something she likes doing, she said.
It might involve hiding car keys and substituting them with nonworking keys, with the caregiver providing the option of driving since the keys cannot be found, Ross said.
She's also called a 24-hour helpline from the Alzheimer's Association at 800-272-3900, where Ross said she's talked with "an actual person" a couple of times.