by The Rev. Dr. Derald H. Edwards, Chaplain, The Heritage at Lowman
With a mother who has early onset dementia, I am experiencing many different emotions at this time. The signs began to appear slowly. I am dealing with a father who has refused to admit the signs are there, so he has not come to terms with her condition. I know he is going through his own emotional struggles as well.
Although I have some experience and knowledge of the disease, having seen it first hand as a nursing home administrator in my former life, it has now become personal for me. Immersing myself into the literature that is available, which is much, I spend time reading about the types and symptoms that are associated with dementia, as well as the medications available to help slow the process this terrible disease holds for loved ones. With that said, here are some things I have learned thus far which helps me cope and better understand the disease as well as the feelings and emotions that I harbor within.
First, most people use Alzheimer’s interchangeably with dementia. However Alzheimer’s manifest itself in different ways and dementia is just one of those manifestations. There is no treatment that can cure dementia, no matter what one hears on television or reads in magazines. Silly commercials on television that tout Prevagen (the one with ingredients used from jellyfish) as well as other supplements or herbs making claims that they say help slow the progress of dementia, are just that, silly, which gives loved ones and those with this disease false hope.
Second, family education and support groups can be very helpful to caregivers. There are many such groups within one’s community. The Alzheimer’s Association is a good place to begin and can provide resources and locations for such groups. Education is one thing and support is another, however, to achieve maximum coping skills, education and support go hand in hand with each other. My father has yet to understand the importance of this. He remains in denial for the most part and in doing so, refuses to seek help for himself as well as social activities for my mother to keep her mind stimulated as much as possible.
Third, dementia has been described by some as “development in reverse.”1 What is believed to be learned and stored in our minds over many years, becomes, if you will, deleted from our brain. As the disease progresses, the loved one whom we have known becomes the loved one we eventually fail to fully recognize, not physically, but emotionally and mentally. However, what is so important to understand is: while dementia is a malady of the mind that manifests itself through memory loss, difficulty communicating, failing to recall how to care for one’s self, incapable of recognizing family members and friends close to them, it is not a condition of the soul, therefore the soul cannot be destroyed by it.
I have experienced this time and again with my mother and others. I cannot say enough about it. Those whose lives have been touched deeply by religion and the spiritual, are able to recall the words and tunes to old hymns. They remember the familiar stories of the Bible when they hear them read. This is evidence of a “brain and mind and soul continuum.” 2
Those who have remained faithful and active in their church, synagogue, mosque, or other religious houses of worship; there is little doubt that the hymns and scriptures they learned all these years reaches beyond dementia to a deeper place. The old hymns and music of the church seem to be stored somewhere deep within them, which I can only call the soul, the essence of one’s being.
What we must remember is that while dementia horribly damages the brain and wipes out memory from the mind, the soul remains whole. And that ability of recalling sacred music, Biblical stories, and familiar prayers is nothing short of miraculous. Nothing that I know of could be responsible for this other than God’s indwelling spirit.
1. Dementia: Opportunities and Challenges for Congregations workshop
2 Dementia: Opportunities and Challenges for Congrega-tions workshop