November is recognized as National Alzheimer’s Awareness Month and National Caregivers Month. But the patient and caregiver are at the mercy of this devastating disease and it’s inevitable progression. Alzheimer’s is the most common form of dementia. According to the Alzheimer’s Association, the disease accounting for 60 to 80 percent of all dementia cases, typically striking those ages 65 and better. Women are more likely to be diagnosed than men. The neurodegenerative disease slowly attacks the brain’s nerve cells causing a loss of memory, cognitive and language skills, and a change in behavior. No one is more affected by this diagnosis than the person who is left to care for their ailing loved one.
“My husband Hank and I moved to this area about 25 years ago. Of course at that time, I had no idea this would happen to Hank.”
Nancy Willett lives in New Bern with her husband who was diagnosed with Alzheimer’s/dementia in 2009. Prior to that, Hank was a very active member in the community, volunteering at the North Carolina Maritime Museum and the North Carolina Coastal Federation.
“He knew that there was something wrong. And he was a perfectionist and so he started dropping out of activities. It’s very hard to watch someone who was so intelligent and so capable to realize that there’s something wrong with them but yet wanting to do things that he can’t do as well as he could before.”
According to research from Alzheimer’s North Carolina, diagnoses of the disease are steadily increasing. In 2010, there were 172,000 people in the state diagnosed with Alzheimer’s. That number is expected to increase by 38,000 over the next five years. Family Consultant with Alzheimer’s North Carolina Rosalind Pugh says an aging population moving to North Carolina to retire is a main factor contributing to the increase in Alzheimer’s cases.
“Out of 100 counties in the state of North Carolina, 89 of those counties by 2025 are projected to have more 65 and older than 17 and older. Age is an important factor, and we are an aging state so therefore that puts us at a higher risk.”
Alzheimer’s North Carolina is among the many organizations and providers attempting to step up services in response to this growing number of dementia patients. Last year, Pugh says they started a resource called Project C.A.R.E. specifically for caregivers here in eastern North Carolina.
“A lot of caregivers, I understand, they’re thinking and living in the moment. But what happens if an emergency happens, what happens if you get sick. So my responsibility as a Family Consultant is to push them to think beyond the moment to at least have something in place, even if it doesn’t happen exactly like you planned it.”
Even though Project C.A.R.E. is a statewide program, Pugh is the only Family Consultant in eastern North Carolina right now. She travels to 33 counties in our region to do one-on-one home visits where she answers questions and links caregivers with resources offered in their own community. These are free visits, so no insurance or doctor’s referral is required. To schedule a consultation, contact Rosalind Pugh directly.
“We do education, we do presentations, we try to get entities at the local area to partner with them and then we can do a workshop, we can do conferences, we do lots of stuff for caregivers.”
Alzheimer’s North Carolina also has a 24-hour helpline where caregivers can call with questions and concerns. Pugh says after someone puts in a call, her organization will contact them within 24 hours, or even sooner for emergencies.
“When a person calls in, there’s a person that answers the phone, they get your information. They will then, based on the information that you give them refer you to myself, to Tamyra, to our corporate office in Raleigh, even if it’s after hours, and they feel that it’s an emergency. It might be they need respite in an emergency situation. And we can get the ball rolling, and get that started and get that respite going as soon as possible.”
Another resource offered by Alzheimer’s NC are numerous support groups. A typical meeting happens once a month. About an hour is devoted to discuss the challenges of caring for a person with Alzheimer’s. Established support groups meet in Kenansville, Snow Hill, Jacksonville, Washington, Greenville, Windsor, and Morehead City. Sessions may include presentations from attorneys and non-profits about local resources available to caregivers. Pugh says content varies from group to group based on the needs of the people that are attending.
“And what I’ve found is because I get to go out in these communities, is that in the more rural counties, people are not as open to come and sit down and talk. That’s not what you do. You just suffer through and if family helps you, fine. If not, you try to suffer through on your own. But I just reiterate that it is a huge benefit mentally, emotionally, and psychologically to come out and know that there are others going through what you’re going through and it’s okay to talk about it.”
There are more than a dozen support groups offered in eastern North Carolina through Alzheimer’s NC. Nancy Willett, who cares for her husband Hank, attends one of the groups in New Bern. She says it provides everyone the opportunity to talk about struggles and share information in a situation that can seem overwhelming.
“The group is confidential. We have people who come who are caregivers. They have spouses, they have grandparents, they have mothers, fathers. We even have people who come who’ve been diagnosed with the disease and we allow them to talk, we allow them to ask questions.”
She says it gives people opportunity to share with a group who can truly empathize with their personal struggles.
“It’s having people that have been there and done this and experiencing the same pain and are willing to listen.”
Caring for a loved one with Alzheimer’s is challenging and exhausting, since they require full time care.
“Hank wants to get involved with stuff. You have to treat him as you would a two or three year old because he will get involved with things, he will hide things and you’ll never find them.”
The hardest part for most is the repeated questions, that is if the patient can still talk.
“I try to respond with a smile, I try to respond with the same answer, and I try to respond in a caring way. And I know he’s not doing it in a mean way.”
Inevitably, caregivers need a break. That’s where respite programs come in. The Sunshine Center in New Bern offers “group respite” for people caring for a loved one over the age of 60 with dementia, Alzheimer’s or other cognitive impairment. Kim Grissom is the Director of the Craven County Senior Center.
“When they come in, we serve lunch. After that, we usually have choir practice we have exercise, chair aerobics, we go for walks, we do different activates like crafts, we play games, we sometimes do chair volleyball.”
All activities that stimulate the mind. Grissom says there are only two rules:
“You can’t sleep and we don’t watch T.V.”
The Sunshine Center is open from 12:30 to 4:30 on Tuesdays and Wednesdays. They also host an Alzheimer’s support group at the senior center with about 20 people on the first Monday of each month.
“I think everyone wants to stay in their home in the end. Most people don’t want to go into a long-term care facility if at all possible. And we know that’s not always possible and we’re grateful that they’re there. But as long as someone is able to stay in their home, we like to be able to provide those services.”
According to the Alzheimer’s Association, the disease progresses in three stages. Early on, memory loss is mild, with difficulty in remembering names, misplacing items, and trouble planning or organizing. In the middle stage, more care is required as they become confused about where they are or what day it is. At this point, patients may wander or become lost. But in the late-stages of dementia, individuals lose the ability to have a conversation and respond to their environment. Patients at this point may require full time assistance with personal care. Caregiver Nancy Willet is still coming to terms that she won’t be able to take care of her husband Hank as the disease progresses.
“I know it’s going to get worse, and I know that I don’t want to let him go. Our children are worried about me. I have put him on waiting lists for memory care units and I pray that they don’t call. Because making that decision will probably be the most difficult thing I do in my life. But I have set a goal that when he’s no longer safe in the home, then that’s probably the time he should go.”
For Alzheimer’s patients in their final stage of life, there are a number of hospice services in eastern North Carolina that offer skilled nursing, respite aide, bereavement support and spiritual care. Knowing what to do for a loved one in late stage Alzheimer’s can be overwhelming. The message for caregivers is to be proactive in working out a plan. And here’s a place to start. Craven County Hospice, in partnership with Carolina East Health and Cotton Funeral Home are holding their third presentation of “The Longest Loss: Alzheimer’s Disease and Dementia.” Director of Craven County Hospice Thomas Smith says the two and a half hour video highlights the role of hospice in caring for people with the disease.
“The program is presented live and recorded live. It is a panel discussion. This particular one was hosted by Frank Sesno, many people remember him from his T.V. career, a great reporter. And it features experts in the field of Alzheimer’s and dementia.”
The Longest Loss has been well received. Over 100 people attended the first program, and the second event packed the Carolina East Auditorium in New Bern with 160 people. Even though Smith is a healthcare professional, the Longest Loss program helped him realized firsthand the importance of early communication of end of life wishes, as his mother is in the latter stages of Alzheimer’s.
“The simple thing with my mother of knowing that her funeral plans are already made, she’s already paid for her funeral. Simple things like that that everyone can do whether they have Alzheimer’s or not. We also talked about advance directives. It’s important that everyone sit down with your family, with your loved one, with your doctor and talk about what are your wishes for time when you’re no longer able to make health care decisions on your own.”
The next Longest Loss program takes place this coming Tuesday, November 10th, 9 am to noon. It’s free and open to the public, but registration is encouraged. For more information, go to: http://events.publicbroadcasting.net/pre/events.eventsmain?action=showEvent&eventID=1753511
To see a list of support groups in North Carolina, go to: http://www.eccog.org/wp-content/uploads/2013/10/support-groups-AlzNC-list.pdf
For more information on resources and services provided by Alzheimer's North Carolina, go to: http://www.alznc.org/