'You can't quit': People impacted by Alzheimer's share their stories
The number of those diagnosed with Alzheimer’s and dementia is rapidly increasing as baby boomers continue to age. Caretakers are often impacted just as much as those who suffer from the terminal disease. WBFO’s Nick Lippa spoke with volunteers at the Alzheimer’s Association about the difficulties they’ve encountered combating the disease.
“I always liken caregivers to people with Alzheimer’s or dementia to veteran soldiers who have been in combat,” said Kenmore resident Michael Neumann. “It’s tough to explain to the civilians what it actually feels like to go through that. But it’s been a real challenge.”
Neumann had many questions he didn’t have the answers to when his wife was diagnosed with early onset frontal temporal dementia 18 months ago.
“Even anticipating the diagnosis, actually hearing it spoken out loud was very deflating. It was very devastating. My wife was at home at the time. She was on vacation. So I had to sit on the news for about a week before she got home and then break to her,” he paused for a moment. “It was tough.”
Since then, Neumann said the disease has progressed faster than he’s expected.
“I was hoping for a grace period of several years before we had to address issues like driving, finances, things like that. But they’ve all popped up within the first 12 months,” he said. “Let me just say that I try not to think too far ahead with this. I try to only cope with the immediate issues as they confront us.”
Nuemann knows there's a good chance he's a widow within the next ten years.
“I have to ask myself, what am I going to do? What am I going to do with my two children? Two adult children," he said. "I have to manage their expectations of losing their mother also. Just some very hard thoughts that I never expected to have to deal with at this stage in my life.”
So how does someone face the imminent mortality of a loved one? Nuemann said support groups help greatly.
“Those groups have been essential to maintaining my well-being and also informing of what to expect," he said. "A lot of the people in the group are dealing with loved ones who are a lot farther down the rabbit hole than I am. So it’s a very scary sneak preview of what I can expect.”
“If you’re committed to being a caregiver for someone,” he said, “you have to maintain your own peace of mind and your own health and that’s going to be vital before you can continue to care for someone else.”
Nuemann, like many others after asking what now, have turned to the Alzheimer’s Association for guidance.
Chris Fingerlow took a class with the association after her husband was diagnosed with Alzheimer’s at 59. She quit her job to become a caregiver.
“And I’m working three hours a day now just so I’m home,” Fingerlow said. “I’m around the corner. We’re still fortunate where he’s still doing things on his own.”
Her daughter Stacy Clause said the job of a caregiver is woefully undervalued.
“It’s a lot harder even on my mom than it is on my dad. My dad, he lives with it. Eventually, he’s not going to know that he’s living with it and she’s still going to have to,” Clause said. “I wish there was something more for caregivers.”
Luckily for them, Fingerlow said an early diagnosis has allowed her husband to decide what kind of care he wants.
“He talked about his funeral that he wants. No matter what time of the year it is he wants Christmas music played,” she laughed. “And he wants (to be) cremated. So we know that. We don’t have to sit there as a family and say, ‘What do you think we should do?’ We know that.”
Clause and Fingerlow joked about how there are still holiday decorations up around the house.
“From Halloween to Christmas our house is totally decorated," Fingerlow said. "You know it’s probably going to be a different thing when he can’t do that. I think that’s probably going to bother him a lot.”
Cheektowaga resident Barbara Wier became a caretaker after her husband Richard was diagnosed in 2009.
Her husband withdrew from almost everybody after that and wanted no one to know. Without being given much direction from his primary doctor, a social worker encouraged Wier and her husband to look in to the Alzheimer's Association.
They were just starting an early diagnosis group for men.
“I did not know if he would even go, because he did not even want to leave the house. He didn’t want to see anyone, talk to anyone. So I just told him we were going to a meeting. And we got in the car and I didn’t really elaborate," Wier said.
"We went to the Alzheimer’s Association. We met the social worker and she took him in a separate room with the other gentleman and I didn’t know how it was going to go. I kind of waited around because I didn’t really know if he was just going to want to go home again. It was a short meeting with the gentleman. Maybe an hour, hour and a half. And so I waited for him and when he came out he was a different person. He was so happy he met other gentleman with the same diagnosis. They were functioning at different levels but they made a connection. They really helped each other out.”
Her husband and the group would meet on a regular basis from that point on. Wier said it made a huge difference for her and for him. She later joined a support group herself.
"We went on the Lockport Locks. We went to the Albright Knox. We went to the Burchfield Penney. We did a lot of things as a group. And it really brought a lot of joy to our lives,” she said. And of course as time went on, our husbands’ abilities were diminishing, but the fellas had developed this bond that they really helped each other. Where one had a deficit, the other one would help. They progressed at different rates, but they developed a friendship that really was amazing for us to watch.”
Volunteers for the Alzheimer’s Association are not all caregivers. George, who is from the Niagara Falls region, was diagnosed with Alzheimer’s at the age of 57. Now 60, he’s fighting to get the word out to help others.
“We’re all ignorant at some point,” George said. “It wasn’t until I started coming here to these meetings that I started learning some things about it. That we can make a difference hopefully to somebody else.”
George worked in chemical plant and at first blew things off, telling himself this happens to everybody.
“Then I started realizing, you just know what your normal is,” he said. “So I knew I was having difficulties. That made me real nervous, so I talked to my doctor and they pulled me out of work.”
“I don’t care how big of a man you think you are. You’re scared. You know, you are. Because it’s unknown territory to you. I think you start thinking the worst.”
There’s no cure for George. When you ask members of the Alzheimer’s Association about him they will tell you what he’s doing is selfless.
“I just thought, if you could make a difference, they’ve helped me, if I could help somebody, that’s what I was trying to do," he said. "Hopefully I can make a difference. If not for me, for younger folks. Hopefully they realize they got a big problem coming, and it ain’t going to go away soon.”
He’s encouraging people to get checked out early and using what he’s learned to promote that message while he can.
“Trust me. Go see your doctor. Listen, it is what it is. If you’re diagnosed with Alzheimer’s disease, I’m sorry. I wouldn’t wish this on nobody,” George paused for a moment. “But you need to know. Worst case scenario, there’s things you need to do.”
For now, George continues to take things day by day.
“Obviously I don’t have any long term plans. I’m talking like ten years. I don’t know how fast this will progress,” he said. “Right now it’s winter time, but I’m looking towards the summer. I make plans. I still have things I have to do. Whether I have this or not. You can’t quit. Just keep going.”
Caretakers. Widows. Others like George with the Alzheimer’s Association. They know there’s people out there with the disease who are asking questions. And they won’t stop because they need those suffering to know: You are not alone.