Oct. 23rd, 2016 | The 23rd Times

A Spiritual Solution Until a Medical One Arrives

By Damian Hanley

…In sickness and in health, till death do us part. When we hear those words, we immediately picture a young couple facing each other at an altar, about to take the most meaningful vows of their lives. And they mean it. It’s a black and white agreement. You are my responsibility until you or I perish. Healthy, happy marriages are one of the few institutions that, when we see that two people have it, it renews our faith. But what happens when the death of the mind precedes the death of the body?

Is this still the same person to whom you made vows? It is… and it isn’t. It is in the sense that their physical body has held continuity through time and space, but it isn’t if you’ve ever watched a loved one go through it. I have. I venture to guess many who read this have. Much unlike your vows, it is not a black and white process. It begins subtly, and ends… as American novelist Philip M. Roth attests, “old age isn’t a battle: old age is a massacre.” No matter how it’s caused, how it begins or ends, Alzheimer’s and dementia, and their many variants, are tragic.

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If you’ve been with your spouse long enough to witness them diagnosed with memory loss disease, then your love is sturdy. This is not someone you’d abandon because of some garden variety tough times. This is someone who you would die for, but alas, they need more than that now.

When your spouse is diagnosed with memory loss disease, and you are called to become their caregiver, more will be asked of you than you’d ever thought possible. They will become the most vulnerable version of themselves right before your eyes, until the day they no longer remember your name, let alone recognize your face.

And you are a good person. You fear God and take vows seriously. You weren’t prepared for this but knew it was in the realm of possibility. Becoming a caregiver to someone with memory loss disease has unique spiritual and ethical components. How good of a person are you? How patient are you? How deep is your faith? Do you really trust God?

Thousands of people in Southwest Florida find themselves asking these questions. Mary Freyre of the Alvin A. Dubin Alzheimer’s Resource Center wants to help answer them. “We typically get calls when people are in crisis. They say ‘I need help. I need help, now. What can I do?’ And then we start connecting them with resources and people in the community – neuropsychologists, neurologists, other family doctors. If they need a home health agency or respite care, we can help them find that.”

Mary is the Health Education Specialist for the Dubin Center – a community resource that is free to caregivers which was founded in 1995. “When someone finds out that their spouse has been diagnosed, they go through a tremendous amount of grief and loss. We call this anticipatory grief. We try to explain the process they’ll go through, but more than that, we try to get them into support groups.”

As an Education Specialist, Mary finds that a lot of the caregivers think they have to carry this burden on their shoulders by themselves. Nothing could be further from the truth (unless you watch the news). “There is a ton of support out there. In these groups, the caregivers form some really tight-knit friendships. It’s a safe place where they can talk about what they’re going through.”

This is not an uncommon example, but imagine if you’ve just retired and you expect to spend the remainder of your life traveling and enjoying life. Or imagine if you’re a husband and wife taking care of a parent with dementia, and you also have three kids in your home. Memory loss disease can affect the entire family, and it affects each person differently. This is how anticipatory grief can become overwhelming. (Anticipatory grief refers to a grief reaction that occurs before an impending loss. Typically, the impending loss is a death of someone close due to illness but it can also be experienced by dying individuals themselves.)

In reference to the title of this article, the Dubin Center is offering a new program whose origin came in the form of a promise to Mary’s uncle. Before his diagnosis, Mary’s uncle was a pastor of a large Protestant church in New Jersey. Seven years before his passing, during the early stages of his dementia, “he said to me, Mary, you’re a nurse, please be a voice for us. He had to give up ministering, he had to give up home visits, he had to eventually give up going to church. People stopped visiting. Even the other pastors stopped visiting. It was a very lonely and painful time for them.”

Two years ago, Mary got to work on the Dementia Friendly Houses of Worship Initiative. She mobilized a handful of organizations, among them the Lee County Sheriff Department, Dr. Mable Lopez of Mind & Brain Care of Fort Myers, Comfort Keepers Home Health, Right at Home, Shell Point Retirement Community, and Choices in Living Adult Day Care of Cape Coral.

These organizations came together and reached out to local churches with the understanding that most churches do not offer an AD friendly service, or resources for caregivers who generally cannot leave the house to attend a service.

“Many churches have a separate portion of the service geared towards the needs of children. We would help train churches and assist in designing a program or service geared towards the needs of AD patients. This would get them out of the house and give the caregivers a respite. We leave it up to the churches to customize each initiative around their particular denomination.”

But how big of an issue is this really? It’s huge. According to the Florida Department of Elder Affairs, there are close to 21,000 people diagnosed with AD in Lee County. The Alzheimer’s Association reports there are about 450,000 people currently in Florida with AD, and that number will increase to roughly 750,000 by 2050 if no cure is discovered. Those do not include the seasonal residents or the undiagnosed. Every 67 seconds someone in the US is diagnosed with memory loss disease, and by 2050 that rate will increase to every 33 seconds unless there is a cure. There are about 5.4 million Americans with memory loss disease, and by 2050 that number could be between 13-16 million, barring no cure. Millions of caregivers will need help.

Mary says, “Now do you see why I started this initiative? We offer one-on-one counseling with licensed clinical social workers, education, a safety program, a wanderer’s ID program, home visits, office visits, networking with other community agencies to help the families in coping with the disease. We also offer open support groups for caregivers caring for someone with dementia. The Center also offers a free evidence-based course to help teach the caregivers on how to improve the quality of life for their loved one with dementia and for themselves. All of the Dubin Center’s services are free.”

Individuals and families living with Alzheimer’s and Dementia will face many decisions throughout the course of the disease including decisions about care, treatment, participation in research, end-of-life issues, autonomy and safety.

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