Today I was talking to my brother on the phone. He expressed concern about my mother and whether she was lonely. He was wondering if perhaps he should go back East to visit. I told him not to worry, that Mom was fine. My mother has been dead for 32 years. My brother suffers from dementia. My father who is deceased also suffered from dementia.
The technical term for dementia is Major Neurocognitive Disorder. There are several forms of dementia to include Alzheimer’s. My brother’s and father’s dementia is called vascular dementia since it relates to strokes.
For the last four years of his life, my father lived in a nearby eldercare facility. I used to visit him and my wife once observed “When you come home from seeing your Dad, you often seem sad.” And indeed when I visited him, I might notice a small bit of evidence that he was losing his past and in some ways losing himself. One of the last times I saw him, he looked at a picture of himself and my Mom from before they were married and asked “Who’s that guy?” I said, “That’s you Dad with Mom before you were married.” He sat pondering then said “She’s gone, isn’t she?” My mother had been dead 6 years.
My father had issues with outbursts. Although he never laid a hand on me when I was young, he was kicked out of one assisted living facility for getting aggressive. My brother also has had these issues such that I have received phone calls from the nursing home that he was having a “mental health crisis” , which meant that he was cursing and yelling.
I know my Dad struggled spiritually with the strokes and dementia. He once said that he believed that the strokes were punishment for his sins. If there was a blessing to the dementia, he seemed to have forgotten his sins toward the end.
What I do know is that dementia presents a challenge for both family and the person suffering from dementia. Family members may struggle spiritually as I do in making sense of what is happening to their loved one. Some family members maintain denial, perhaps until a crisis forces the issue. One person I know avoided their father’s encroaching dementia until he left the stove on, burning food and resulting in the fire department being called by a neighbor. Others may be angry, blaming the person suffering from dementia, saying things like “He should have taken better care of himself” or “This wouldn’t have happened if she didn’t drink so much.” Still other family members may simply stay away as much as possible.
Family members may also struggle with the inevitable reversal of roles where the child/partner becomes the parent. When I had to confront my father about his outbursts, he would become childlike, asking “Do you still love me?” I also had to set some boundaries as a parent does with a child. One night after I visited him, my father called demanding that I go to the store and get him some milk. He claimed “If I don’t get milk, I’ll die!” I told him without anger “You won’t die. I’ll be buying you milk in the morning” and hung up.
The person suffering from dementia can obviously be dealing with fear, especially as they sense early dementia within themselves. My father would try to joke about it, saying things like “I’m going goofy!” Others may have their own form of denial, saying things like “It’s not dementia. I’m just getting old.” As family members try to intervene because of concerns recalling issues like driving or finances, the person facing dementia may become defensive. Still others may project their anger with words such as “I’m fine! Leave me alone.”
I don’t have dementia, at least not yet. But I do struggle spiritually with the reality of dementia in those I love. Not surprisingly, I get angry with God about it. We don’t really know yet what causes dementia but I do know it can strike anyone. Like the rain, dementia can fall on the just and the unjust. I know this yet I nonetheless have my own outcry of “why him?” or “why her?” Some people may raise the issue of God’s will. For me that’s not a comfort.
I do know that spiritually I have a choice in how to respond. I can struggle with accepting that dementia can be as much a part of life as illness or death. I can try to trust that God can assist me in finding comfort and care for my loved one. And, yes, I may even pray that God take my loved one while at the same time trying to accept that time of death is not my decision to make.
As a family member, I can also seek meaning in what is happening. Clearly I have had much to learn and the illnesses of my brother and father have helped me in that regard. In dealing with my brother (with whom I never had a great relationship), I have prayed for patience and wisdom. Both are qualities with which I need some help.
And what of the spiritual needs of the person suffering from dementia? Interestingly, there has actually been research into the impact of spirituality on care of the patient with dementia. An overview of this research can be found in the journal Healthcare (May 2023). The authors review other studies and conclude that identifying and addressing spiritual needs of patients suffering from dementia can have a positive impact on its progression. The authors note that addressing spiritual needs of those suffering dementia is often neglected in both theory and practice.
Helping the dementia patient tap into his/her spiritual story and life can be a great comfort. St. John’s Dementia Resource Center suggests several option:
- There is the obvious practice of praying with the patient/family member, praying especially for comfort and peacefulness.
- Sharing specific prayers can be a comfort as well as stimulate memory functions. Favorite Bible verses can also be shared.
- For those unable to recall the words of prayers, there is good evidence that they can still respond to music and may remember a specific hymn. Thus the dementia patient may not remember the Lord’s Prayer but may indeed recall the words and tune of “Amazing Grace”
The loved ones of a person facing dimension can also benefit from spiritual awareness and practice, finding both comfort and realistic hope. There is one other important spiritual lesson that both my father and my brother taught me.
Living in the now has been a popular psychologic theme for some time, being a focus not only of some therapy but also other practices such as meditation. However, I have experienced that lesson strongly with both my father and my brother. My Dad taught me to savor the moment as he enjoyed a bowl of oatmeal. He taught me the power of living in the now when he would light up with joy when I came to visit. My wife came with me the last time we visited and she had dressed up and put on some make-up. He joyfully pointed at her and said “Isn’t she something?!” Similarly when I go to visit my brother, I will bring along a Subway sandwich which he greatly relishes. They both reminded me not only to live in the now but to cherish what the Shakers call simple gifts.
I hate the dementia that has taken their pasts but I have come to see that, by being a part of their journeys, I have learned some important spiritual lessons. And for that I am grateful to them both.
RESOURCES
St John’s Resource Center mentioned above can be found at https://dementia.stjohnsliving.org/spirituality-in-dementia-caregiving
The Dementia Society of America is also an excellent resource at https://www.dementiasociety.org/?msclkid=34ee1dbf577617d58f8b7705b0daa898
Finally when my dad had his first stroke, I read a book titled The 36-Hour Day by Nancy L. Mace and Peter V. Rabins . It was very helpful.
Feel free to add as a comment any other resources of which you are aware





