Civil War event will feature CSS Hunley replica
For Hope Trumpie, Saturday’s Walk to End Alzheimer’s in Mount Airy may bring back painful memories.
But the annual event is also a chance for her to share her story and hopefully let people know that the Alzheimer’s Association has vital information and help for people struggling with the disease. And the march serves to keep the disease front and center in the public consciousness so the research dollars keep flowing.
The basic definition of Alzheimer’s disease, according to the Oxford Dictionary, is that it is a “progressive mental deterioration” that leads to degeneration of the brain, eventually leading to dementia and death.
For people like Trumpie, it’s also a cruel disease that robs a loved one, bit by bit, as their ability to drive, shop, do all the basics of self-care erodes. At some point, those who suffer from the disease will even lose the ability to remember friends and family members for life.
Trumpie had to watch three people close to her go through this process before she died: her mother, a close family friend whom she helped care for, and her sister, although her sister died of body disease. de Lewy, another form of dementia.
Along with her mother, Trumpie said there were no major sudden changes that initially caused great concern.
“It was just subtle changes that you often equate to someone in their early 80s,” she said recently. “But it wasn’t mom, she wasn’t one to make mistakes with finances, she wasn’t one to forget things,” she said. “One summer, Dad and I noticed that she was forgetting things, repeating things, which was really the most important thing. She was still managing the household budget, but there were things that were wrong .
She had recently had knee replacement surgery, so they wondered if some of the issues were related to that, but her mother’s doctor ruled it out.
Then she said there was a gradual decline.
“For months everything was fine, then there would be another turn. She would forget more things; she would become confused. She would be driving and saying, “I’ve never been here before,” despite having been there many times. Or she might say “I wonder how you’re doing, haven’t seen them in months” when she saw them last week.
Eventually, she said her mother’s forgetfulness became more severe.
“Then you ride with her and you realize she can’t drive. That was the hardest thing – taking the driving off him. We had to hide his keys.
Then came the inability to recognize people.
“She might speak with someone and then say, ‘I have no idea who that person is…and it was someone she sat with in a pew every Sunday.
“And then she forgot who we were.”
Trumpie said watching her mother fade away meant that every few months, or every few weeks, they would have what she called “a new normal.”
Her mother would ask questions about when her father was going to pick her up – her father had been dead for 55 years by then – or she could talk about her little family dog who had been dead for years, wondering where the dog was .
At times, Trumpie said her mother was, in her mind, a little girl again, or some other time in her life, with no idea that the years had passed.
Trumpie said that as if looking at the deterioration of someone with Alzheimer’s or other dementia wasn’t bad enough, there are other stresses that come with caring for someone. a.
“If you work, if you have to work to pay your bills, you are always worried. How will I support my family and take care of my loved one? »
In her case, Trumpie said she was lucky. She and her siblings, as well as their father, were able to handle most care issues, while her husband took on all the household chores to free her up to spend time with her mother.
Trumpie also worked for a company involved in dementia research, so she had access to information that many others may not have.
But it was still a stressful time.
“Take care of yourself, sleep and rest,” she advised caregivers. “Realizing that getting angry is part of the game. They were there for you, they took care of you. Now you take care of them.
“Treasure every minute, try to breathe deeply, realize they are still your parents. They’re lost somewhere, they’re scared, they don’t know what’s going on, you really have to be patient. It’s a virtue, that’s for sure, easier said than done.
No more pain
Watching his mother fade away wasn’t the only time Trumpie suffered from Alzheimer’s and dementia. Two years earlier, in 2016, she said her sister had died of Lewy body disease, a life-threatening degenerative disease.
“It’s a rapidly progressing dementia that robs them of their cognitive ability, their speech, their ability to move, they lose everything. It’s very difficult to work with that,” she said. Initially, she said her sister was being treated for Parkinson’s disease, but they learned she had been misdiagnosed as her condition continued to deteriorate.
And there was a family friend.
Trumpie said her mother served as their friend’s caregiver when her mother fell ill. After her mother’s death, Trumpie said she took on the duties of carer for their friend, observing the same progression of the disease.
Whether it’s Alzheimer’s disease or other forms of dementia, she said such illnesses are among the most difficult conditions for those around the sufferer.
“It’s the most heartbreaking of illnesses,” she says. “You lose them again and again and again. I clearly remember where I was the last time I heard my mother say my name. I don’t want anyone going through this, going through months and months and months without a parent knowing you.
the saturday walk
Despite some somber celebrations planned for Saturday’s rally, Trumpie said it was also a time to support each other, educate others about Alzheimer’s disease and raise funds for research.
For her part, Trumpie said she and a number of her family members will be there to walk and encourage people to donate money to the cause.
“Even if you cannot support us financially, support us with prayer…. just wear the color purple on Saturday and think of all those caregivers going through what my family has been through.
Saturday’s march takes place at Riverside Park, located at 350 Riverside Drive in Mount Airy. Check-in opens at 9:00 a.m. with an opening ceremony at 10:00 a.m. and a ride departure at 10:30 a.m.