Healing Moments, recipient of a national award for best practices in family caregiving, will offer a free workshop, “Meeting Alzheimer’s,” on Saturday, April 14 at St. Alban’s, Bexley.
Through presentation, experiential exercises, discussion, and reflection, participants will have the opportunity to learn and practice creative, effective methods for communicating and connecting with, and caring for persons with Alzheimer’s and dementia. Combining information about dementia with creative drama and improvisational principles, this workshop is designed to deepen awareness of the value of persons with Alzheimer’s and dementia, increase understanding of their limits and needs, and improve the delivery of their care. Participants learn and practice recommended skills for enhancing quality of life for persons with dementia and reducing caregiver stress.
The workshop will take place from 9 a.m. to noon on April 14. For more information, contact St. Alban’s at 614.253.8549 or firstname.lastname@example.org.
Healing Moments for Alzheimer’s provides caregivers and patients hope
Alzheimer’s is the sixth leading cause of death in the United States, with more than five million living with the disease, according to the Alzheimer’s Association.
In 2017, Alzheimer’s and other dementias will cost the nation $259 billion. By 2050, these costs could go as high as $1.1 trillion.
Of caregivers providing care for those with the disease, 35 percent say their own health is deteriorating because of their care responsibilities. Every 66 seconds, someone in the United States develops the disease.
The statistics — and there are plenty more — are staggering, daunting, and sure to only increase in the coming years without a medical breakthrough which would allow treatment, if not a cure. We all know that’s not going to happen anytime soon.
For those living with the disease, and for those intimately involved in care for their loved ones, there doesn’t seem to be much hope.
“Healing Moments for Alzheimer’s” is a program intended to help people with dementia and Alzheimer’s and their caregivers. The program was developed by the Rev. Jade Angelica, who received her doctorate from Harvard Divinity. Through the experience of caring for her mother, who had Alzheimer’s, she realized that there was a way to communicate with people with dementia and Alzheimer’s that could enrich most people’s lives. The program has won awards for its effectiveness is now being presented across the country.
Angelica’s book, “Where Two Worlds Touch,” focuses on the value offered by those who have Alzheimer’s.
“In our culture, we tend to think that people who have dementia or Alzheimer’s are over the hill, there’s nothing left, they’re empty shells,” Angelica said. “This program really changes … the outlook of that culture, asking, what is it that they have to give us and what is it that we have to give them? And how do we do that? So, it’s about the relationship; teaching people how to be in the relationship and bring hope into one another’s lives.”
That’s not an easy task, according to Raysa, but one that isn’t impossible either — with understanding and training.
“We’re the ones who have to change — the caregivers — the people that are relating to those who have Alzheimer’s, because those with Alzheimer’s are not able to change,” she said. “They’re seeing the world very differently from the way we’re seeing it. We must step into their world and see things from their perspective. And that’s very hard to do, because Alzheimer’s and dementia are terminal and it’s very long-term most of the time. There is a lot of grieving, there’s a lot of loss early in the disease by both the caregiver and the person who is going through the disease. So, we have to break through our own grief and begin to see the world as they see it.
Raysa explained that there are different sequences to the stages of Alzheimer’s and “understanding what those sequences and stages are can be very, very helpful in understanding how to communicate with someone who has this disease.”
It was her personal experiences and a moment of discovery that directed Raysa to become involved in Healing Moments.
“My dad died from Alzheimer’s and my brother died of Alzheimer’s after being diagnosed with early onset at 55,” she explained. “We’ve had a lot of issues in our family. I realized for the first couple of years when I would visit my dad that he would be very angry and I would ask why this was happening at this time in his life when he should be living a happy, carefree life. Why is this happening to my brother? I would fly to Chicago and visit my brother at one nursing home in the morning and then visit my dad in the afternoon in another nursing home. I realized one day … when I walked into my dad’s nursing home and I saw Sally over there in the corner waving to me with a big smile on her face and I looked in the other corner and there was Ray who was very happy to see me. The light bulb went off: We need to do something different. These people are trying to communicate with me. How do I step into their world? So, the journey began.”
This workshop is open to anyone who wants to know more about the disease. Not only will the program focus on techniques based in improvisation and how to create the environment as the person with the disease sees it, but it also includes hands-on, experiential exercises which help teach people how to bring hope not only into their own lives, but into the lives of the patient.
“It’s very much a hands-on workshop,” Raysa said. “It’s not pure lecture. You’re not going to sit and listen to the medical language, the long words, but there are some parts of the program where you will hear the practical information about what is going on in their brain. What causes the lack of sequencing? What causes the lack of vision contraction, so you can begin to understand why some of these behaviors are happening.”
Because the disease is, for the most part, a long-term situation, many are faced with denial, “and so, once we realize it, then we have to figure out what to do about it. So much of it is our own grief and how do we break through that — that sadness of loss,” Raysa explained.
“One of the first questions we ask is, ‘How many know someone who has dementia or Alzheimer’s?’ Most times, it’s like 99 percent. This disease has touched, and will continue to touch; so many — by the year 2030, it’s expected there will be a 40 percent increase. A lot of that is because of longevity. People are living longer. But it’s continuing to touch people in all kinds of ways. So, anyone is welcome to this program. It is free.”
People are just eager for help, ‘What do we do?’” Raysa said. “It can be a very stressful situation for families and we’re trying to get everyone on board, instead of running the other way.”
Realization that the disease is taking hold of a loved one is the first step in acceptance.
“Many times we have people come in and say, ‘Gee, I wish I had known this 10 years ago.’ This program addresses needs in a lot of different areas — we encourage families to attend this,” Raysa said. “In one of our workshops, we had … four family members who were … in denial and after the workshop they came up, they were in tears, and they said, ‘Thank you, thank you. We just didn’t have any idea. We were in denial and we didn’t want this to happen …’ They turned to their mom, who was in the very early stages, and said, ‘Mom we’re going to be there for you.’”
The crux of the program is designed around giving people hope and an understanding of the world in which their afflicted loved one lives.
“There are some things that remain in people with Alzheimer’s,” Raysa said. “I have a gentleman in one of my organizations that can’t speak an entire sentence, but he can sing a whole song. Realizing what remains and understanding how we communicate with what remains can bring a lot of value to one’s life. Many say they are more fearful of getting Alzheimer’s than they are of dying. A lot of that is due to lack of education and not understanding the disease and what’s happening.
“When we realize they’re not screaming at us because they don’t love us, they’re screaming at us because they’re in a different world … It’s better when we understand what their world looks like and how we respond to that instead of running the other way,” she said.
The disease of Alzheimer’s is progressive. The loved one is not going to get better.
“So the way we teach is not from what is, but from what is their perspective,” Raysa said. “It’s not about giving up hope … Alzheimer’s is a caregiver’s disease, it’s not a doctor’s disease, because there isn’t any cure. We can’t give someone a pill … to get better. But we know they respond very much to emotion — emotions remain. When I went in and said to my dad, ‘I love you so much,’ but there’s anger in my voice and my body, he’s going to respond to the anger. They are very emotionally sensitive. The way we present ourselves is very, very important.”
“This is a disease that’s here to stay and it’s only going to multiply with the number of people being affected,” Raysa said.
But with a little understanding, the lives of caregivers and their loved ones will markedly improve.
Submitted by Eileen Becknell, St. Alban’s, Bexley