Did you know that one in 10 people 65 years old or older have Alzheimer’s/dementia? Take a look at your congregation each Sunday, especially the aging portion of it, and consider how many of them might be struggling with this disease—usually without anyone but their direct caregivers being aware of it.
- Pastor Tip for Navigating Dementia #1: Know the signs and symptoms of dementia/Alzheimer’s.
There will be noticeable changes in moods or behaviors, such as difficulty grooming, dressing or driving, as well as nonsensical conversation or repetition of phrases or words. Does your parishioner really know you or familiar folks around them? Listen carefully! They may never say your or others’ names, but treat everyone as friends, and you can be fooled to believe all is well.
Each person suffering from dementia requires increasingly constant and intensive care, often provided by one or more family members, who are themselves dealing with enormous pain and stress (emotional, physical, financial and spiritual), feeling helpless in the face of an invisible disease.
- Pastor Tip for Navigating Dementia #2: Be aware of the caregiver’s actions.
Oftentimes, family and friends may be very reluctant to acknowledge what’s happening. They will do everything possible to cover/make excuses for unusual changes in their loved one.
This need is real. It’s growing. And pastors must be ready to respond to it.
The journey through dementia and the family of diseases it represents is unlike anything you could imagine unless you’ve experienced it. Alzheimer’s/dementia is a disease that affects the brain. It changes how information gets from one part of the brain to another. It affects how one views the world—it is a skewed view or not-quite-reality perception.
It begins slowly and subtly. You notice some lapses in your loved one’s cognition, but easily brush them aside, attributing them to the inevitability of advancing age. For instance, there was a time when my father was sure he saw an Australian dingo in his backyard in Kansas. Or, the time he “remembered” the frigid air of Mt. Everest as he climbed.
Kinda funny. He’s just getting older. That’s what we told ourselves.
The disease progresses. Everyday living becomes more difficult. Bills don’t get paid. The power company calls—the power is about to be turned off. That’s not Dad, he was meticulous with his money. Hm, I will have to help a bit; he’s just getting older. That’s what we told ourselves.
It continually progresses. More concerning events begin to happen. Poor choices are made. Dad put every gun he owned in the trunk of the car (to keep them safe) while driving to Minnesota. Worrisome. Why would he do that? We just need to explain to him why that’s not a good idea. He will understand. That’s what we told ourselves.
The downward spiral seems to accelerate. Dad would walk away and could disappear in an instant. He didn’t know where he was. This was truly frightening. There is something serious happening here. We knew we had to intervene.
It is extremely difficult to accept what is happening. It is extremely difficult to walk through. Every day brings new challenges. But, there are some things you can be sure of. In the midst of this difficult terrain, Jesus can so simply and beautifully remind us of His joy! Living every day with Him requires us to trust in His strength to carry us through!
“But my eyes are fixed on you, Sovereign Lord; in you I take refuge…” (Ps.141:8, NIV)
You are not alone. God will be with you, especially in a time where others don’t necessarily understand what you’re dealing with.
Because, at the beginning, dementia can look perfectly “normal.” To look at someone suffering from it, especially in the early stages, you can’t distinguish the debilitating disease. They may still be well-groomed, clothed properly, and have eyes that focus and respond. Their appearance may conceal the disease lurking inside. Even after a diagnosis, it can be quite difficult to grasp the severity and gravity of the prognosis.
There is much to lament during the course of Alzheimer’s disease. The loss of memory, the decline in health, the changes in personality. But if you adjust your lenses a bit, you are able to find joy.
- Pastor Tip for Navigating Dementia #3: Be ready to help when needed.
Connect with folks in the congregation on similar journeys and consider facilitating or establishing a support group. Have resources available to your community—and be willing to broach difficult subjects, such as power of attorney, health directives, living wills or trusts, Medicaid, and any legal ramifications of decisions.
It was hard to detect the disease in Dad. He looked “normal.” Generally, he acted “normal,” and mostly his conversations were “normal.” But to reconcile a life-threatening disease that wasn’t visible was excruciating. It “looked” like mental illness, and to anyone with pre-conceived stereotypes of mental illness, it can be a terrible blow. It’s easy to hide it and deal with the descent privately and painfully, choosing not to see or acknowledge it.
But it is infinitely better to recognize and address the disease—and remind yourself that even though how you interact with or relate to the sufferer may change, Jesus’ eternal love for them has not. Nor should yours.
The Zulu people of South Africa have a traditional greeting, given in two parts. When two people meet, they look intentionally, meaningfully into each other’s eyes:
The first person says, “Sikhona” (I am here to be seen).
Alzheimer’s says, “I desperately need you to recognize me.”
The second person replies, “Sawubona” (I see you).
Our response should be letting God empower us to say, “I recognize and will advocate on your behalf.”
- Pastor Tip for Navigating Dementia #4: Treat Alzheimer sufferers and caregivers with utmost dignity.
No matter the current situation, this person has lived a full life and deserves to be treated accordingly. When visiting, talk of youth or earlier memories, as those often seem to be the last to go. Recognize that it’s extremely lonely and incredibly difficult for caregivers, and you must try to understand the unique stressors the situation causes.
How desperately the Alzheimer’s sufferer needs to be truly seen and the caregivers must be recognized and supported. With God’s strength and courage, you can look and genuinely “see” them as those loved by God and who we must continue to love and serve.
“Open my eyes that I may see wonderful things in your law.” (Psalm 119:18, NIV)
Jesus can provide the conviction to see with His eyes and have the strength for what lies ahead. The Lord can help you to always “see” with your eyes and be unhindered by any physical trappings of this world or temporary suffering.
“Blessed be the God and Father of our Lord Jesus Christ, the God of all comfort. He comforts us in all our affliction, so that we may be able to comfort those who are in any kind of affliction, through the comfort we ourselves receive from God.” (2 Cor. 1:3–4, CSB)
This article was excerpted from 43 Junctures with Jesus: Encouragement for Caregivers by Joni Wyatt.