For Hope Trumpie, Saturday’s Walk to End Alzheimer’s in Mount Airy can dredge up some painful memories.
But the annual event also is a chance for her to share her story, and hopefully spread the word that the Alzheimer’s Association has vital information and help for those dealing with the disease. And the walk serves to keep the disease front and center in the public consciousness to keep research dollars coming in.
The basic definition of Alzheimer’s, according to the Oxford Dictionary, is that it is a “progressive mental deterioration” which leads to degeneration of the brain — eventually leading to dementia and death.
For people such as Trumpie, it is also a cruel disease which steals a loved one, a little bit at a time, as their ability to drive, shop, do all the basics of taking care of one’s self erodes. At some point, those suffering from the disease will even lose the ability to remember life-long friends and family members.
Trumpie has had to watch three people close to her go through that process before eventually passing away: her mother, a close family friend who she helped care for, and her sister, although her sister died from Lewy Body disease, another form of dementia.
With her mother, Trumpie said there were no major sudden changes that caused great concern at first.
“They were just subtle changes that a lot of times you’d write off as someone being in their early 80s,” she said recently. “But it wasn’t Momma, she wasn’t the type to make mistakes with finances, she wasn’t the type to forget things,” she said. “One summer, Daddy and I noticed she was forgetting things, she was repeating things which was really the big thing. She was still managing the household budget but there were things that were off.”
She had recently had knee replacement surgery, so they wondered if some of the issues were related to that, but her mom’s physician ruled that out.
Afterward she said was a gradual decline.
“For months, everything would seem fine, then there would be another turn. She would forget more things; she would get confused. She would be out driving and say, ‘I’ve never been here before,’ when she had been there many times. Or she might say ‘I wonder how so and so is doing, I haven’t seen them in months’ when she had seen them last week.”
Eventually, she said her mom’s forgetfulness became more serious.
“Then you’re riding with her, and you realize she can’t drive. That was the hard thing — taking away her driving. We had to hide her keys.”
Then came the inability to recognize people.
“She might talk with someone then say, ‘I don’t have a clue who that person is…and it was someone she had been sitting in a church pew with every Sunday.”
“And then, she forgot who we were.”
New normal
Trumpie said watching her mom fade meant every few months, or every few weeks, they would have what she called “A new normal.”
Her mom would ask questions about when her dad was going to pick her up — her father had been dead for 55 years at that point — or she might talk about her small family dog that had been dead for years, wondering where the dog was.
Sometimes, Trumpie said her Mom was, in her mind, a little girl again, or at some other point in her life, without any idea the years had gone by.
Trumpie said as if watching the deterioration of someone with Alzheimer’s or other dementia wasn’t bad enough, there are other stresses that go with caring for someone.
“If you’re working, if you’re having to work to pay your bills, you are always worried. How am I going to support my family and take care of my loved one?”
In her case, Trumpie said she was fortunate. She and her siblings, along with their dad, were able to handle most of the care giving issues, while her husband took on all of the household duties to free her to spend time with her mom.
Trumpie also worked for a company involved with dementia research, so she had access to information many others may not.
But it was still a stressful time.
“Take care of yourself, get some sleep and get some rest,” she advised those serving as caregivers. “Realize getting flustered is part of the game. They were there for you, they took care of you. Now you take care of them.
“Cherish every minute, try to take a deep breath, realize they are still your parent. They are lost somewhere, they are scared, they don’t know what’s going on, you just really have to be patient. It’s a virtue for sure, it’s easier said than done.”
More pain
Watching her mom fade was not the only time Trumpie dealt with Alzheimer’s and dementia. Two years earlier, in 2016, she said her sister died from Lewy Body Disease, which is a degenerative condition that is always fatal.
“It’s a fast-moving dementia that robs them of their cognitive ability, their speech, their ability to move, they lose everything. That’s very hard to work with,” she said. Initially, she said her sister was being treated for Parkinson’s, but they learned she had been misdiagnosed as her condition continued to deteriorate.
And there was a family friend.
Trumpie said her mom was serving as a caregiver for their friend when her mom became ill. After her mom passed away, Trumpie said she assumed the caregiver duties for their friend, watching the same progression of the disease.
Whether Alzheimer’s or other forms of dementia, she said diseases such as these are among the most difficult conditions on those around the person suffering from the affliction.
“It’s the most heart-wrenching of diseases,” she said. “You lose them over and over and over again. I can clearly remember exactly where I was the last time I heard my mother say my name. I don’t want anyone to go through that, to go through months and months and months without a parent knowing you.”
Saturday’s Walk
Despite some somber observances scheduled to be part of Saturday’s gathering, Trumpie said it’s also a time to support one another, to educate others about Alzheimer’s, and to raise money for research.
For her part, Trumpie said she and a number of her family members will be there walking and encouraging folks to donate money to the cause.
“Even if you can’t support us financially, support us through prayer…. just wear the color purple Saturday and think about all those caregivers going through what my family went through.”
Saturday’s walk is at Riverside Park, located at 350 Riverside Drive in Mount Airy. Check-in opens at 9 a.m. with an opening ceremony at 10 a.m. and a walk start at 10:30 a.m.
Source: https://www.mtairynews.com
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