Caring for a loved one with a debilitating disease can be a rewarding experience, but it can come with a great deal of stress, exhaustion and, at times, heartbreak.
“When some people come in, you can see they’re a spring ready to pop,” said Kent Liddle, the group facilitator for the Alzheimer’s caregiver support group in Ocean View. “There are a lot of people down here dealing with it that you wouldn’t know.”
“We try to do everything we can to reach out to caregivers to give them the support that they need,” said Jamie Magee, Sussex County program coordinator for the Alzheimer’s Association’s Delaware Valley Chapter. “We have found through trial and error that meeting with other people who are going through the same issues, obstacles and problems, and talking to them about how they handle it, is most helpful.”
The Ocean View group meets on the first Thursday of each month at the Coastal Leisure Cheer Senior Center at 6 p.m.
“It’s an outlet for the caregiver of an Alzheimer’s or dementia patient to get with other people who are in the same situation in their lives, and share their experiences and their frustrations, all the different emotions. It’s incredible some of the stories, how it changes their lives,” said Liddle.
“It is a wonderful facility. So many people I talk to my age know the building, but they don’t know what it’s about. They do a wonderful job.”
The meetings are free and open to the public. Currently, Liddle said, four to seven people attend the monthly meeting.
“They don’t have to talk. If they want, they can just come and observe — that’s fine. It can be an outlet for them to come and get away for an hour and a half. Even if you don’t choose to participate, you’re still around people that are in the same situation as you are.”
According to the Alzheimer’s Association’s website, “Alzheimer’s is the most common form of dementia, a general term for memory loss and other intellectual abilities serious enough to interfere with daily life. Alzheimer’s disease accounts for 60 to 80 percent of dementia cases.”
“The statistics show there’s an increase. It’s one of the top 10 killers in the U.S. Alzheimer’s disease is sixth. It’s the only one between 2000 and 2010 that increased. The rest decreased. Alzheimer’s increased by 68 percent in that time,” said Magee. “With the baby boomers, the people born from 1946 to 1964, we started turning 65 Jan. 1, 2011, and we’ll continue turning 65 until Jan. 1, 2030, and every single day during that period of time, there are more than 10,000 boomers who turn 65.
“The statistics for Alzheimer’s is one person out of every nine that reaches the age of 65 will develop Alzheimer’s. We have about 5 million Americans right now that have Alzheimer’s, and by 2050 we’re looking at that number tripling, to about 16 million.”
“I describe Alzheimer’s as a fatal disease that you never get better from — it just progressively gets worse,” said Liddle. “As far as cancer, there’s hope that you could get better. There’s no hope with Alzheimer’s — you’ll eventually die from it.”
Magee said that, with a growing community populated by many retirees, the need for services is growing, as well.
“The problem is, we’re such a growing community, with so many people retiring here. It’s very difficult to let everyone know that we’re here,” she said.
Liddle said they would like to draw more caregivers to the group so they can receive support.
“Unfortunately, it’s a disease that requires 24-hour care,” he said. “We try and get those people aware that there’s a place they can come and share their experiences and frustrations — just to know there are other people going through the same thing. So often, people get so bogged down by it — you think you’re the only one going through it, and that’s not the case.”
“One of the first things they tell me when they go to a group is, ‘I thought I was the only one dealing with this,’” echoed Magee. “It makes them feel better just to know they’re not the only person.”
Magee said Liddle has been a great facilitator and volunteer for the organization.
“He has no connection to Alzheimer’s. He just had an experience with a person who had dementia, and it hit him with such force that he wanted to help. He’s just one of my best volunteers,” she said, noting that Liddle also volunteers for the Gull House Adult Activities Center. “He’s very interested in learning.”
“When I started, I was worried. I’ve never taken care of anyone with Alzheimer’s for a long period of time, so I don’t have a lot of experience,” said Liddle. “What I found was everyone else jumps in and shares their experiences. It’s just nice to see people interact.”
Liddle said that, for those caregivers who would be unable to attend because they do not have someone to take over care temporarily, the caregiver can bring their loved one.
“What we try to do with this particular group that’s a little different than others — if you’re in a situation where you can’t get away because you don’t have someone who can watch the person you’re caring for, you can bring them with you. We have people who will watch them and entertain them while we’re having the meeting. That’s nice. A lot of people don’t use it, but it’s there.”
Magee said those who want to get involved with the Alzheimer’s Association and volunteer may participate in the annual Walk to End Alzheimer’s on Oct. 3 in Rehoboth Beach.
“The last two years, all of our 400 walkers raised over $100,000. That has been tremendous,” said Magee. Of the 2001 event, she said, “The first year I worked, I had worked for two weeks before the walk, and we had 75 walkers and raised $25,000, so you can see it’s quite grown.”
Magee said support is crucial for anyone dealing with dementia — be it a patient, family member, friend or caregiver. Those who are unable to attend a caregiver support group may, at any time, call the Alzheimer’s Association’s toll-free 24-hour helpline, at 1-800-272-3900.
“That number works anywhere in the U.S., and it’ll get you to the nearest office if you’re using a local phone,” said Magee. “That number is always manned by a trained professional, and it never closes. When our office closes here, the Chicago office takes over. So, on a holiday, a weekend, in the middle of the night — if a person has a problem or a crisis that they’re dealing with with someone with dementia and they need some help, they can call that number.
“Even if the person just needs to talk — if the caregiver is so overwhelmed that they need to talk, that’s the time to call.”
For more information, or to volunteer for the Alzheimer’s Association, call Jamie Magee at (302) 854-9788 or email Jamie.firstname.lastname@example.org. To contact Liddle regarding the caregiver support group, call (610) 639-2322 or email email@example.com. Registration information for the Walk to End Alzheimer’s can be found by visiting www.alz.org/delval.