That word strikes fear into the heart of anyone who hears it spoken either in reference to themselves or to their loved ones. Dementia is a strange death sentence in that it steals your life but leaves you alive; you or your loved one becomes a shell of themselves, unable to think clearly, unable to remember their loved ones, unable to be and do the very things that make them who they are.
And yet I wonder…
Does dementia strip us to our very core, eliminating everything but the nut of who we are? Or does dementia choose for us who we will be? Does dementia twist us out of our own personality and being into some caricature of ourselves, leaving our family with someone who looks just like us but acts like a total stranger?
I ask these things because I am losing my father by degrees, even though he still looks the same.
Only 30 days ago I could talk to my father over coffee and know who he was. He would complain about my mom at length, but eventually he would ask me about my daughters and my husband; he would ask me about my counseling practice and my ministry. We could laugh about the past and tell stories about his childhood and mine. His stroke in 2009 may have stolen some of his ability to speak, but it didn’t steal his ability to communicate his love and who he was. My father still had his sense of humor and his concern for our entire family.
In late January 2018, my father fainted, fell, and broke all the bones in his face. The injury was so severe that it advanced his dementia dramatically; he lost both physical and mental abilities. The ten days he spent in the hospital made it clear that my father was so demented that my mother would never be able to bring him back home. After a short stay in a skilled nursing facility for physical therapy, we placed my father in a memory care center.***
Sadly, ever since about seven days after his hospitalization, my father has had only one thought: my mother, and why she isn’t taking him home. His anger increases by the day and so does his agitation. I tried bringing my two dogs to visit my dad at the memory care center so that he had something else to focus on, but he continued to have a one-track mind. The staff have been unable to derail his thought process; I have been unable to derail his thought process; sadly, my mom’s visits have done nothing but increase his anger and aggressiveness.
To put this in plain language, when my mom shows up he threatens to beat her severely and has even threatened to kill her several times.
The whole thing just might kill me.
I live in fear that one day dementia will take me down this path and I will suddenly become a monster that terrorizes my own family; I fear that my words will become weapons and I will become a burden they ought not to bear, not even for love.
This is why I wonder if dementia decides who we will be, or if we are simply stripped to our core.
If dementia decides for us, there is much to be afraid of but little to do, except try to remain optimally healthy with low cholesterol numbers and CRP (C Reactive Protein) counts. After all, if dementia decides who we will be then we can only hope to avoid dementia and the various diseases that cause it (strokes, other brain injuries, Parkinson’s, etc.)
On the other hand…and of course, this is the option that causes me even more pain…
I am not even going to attempt to understand how this violence and anger can be all that was at my father’s core. It is very painful to think about, and it wouldn’t change anything or make what is happening easier to bear.
If dementia strips us to the very core, to the nut of our personality, then it is time to examine what sits in the center…the sin, self-centeredness, and cruelty that we try to hide from anyone and everyone. No matter how much I love Jesus and how faithfully I serve, I am only human and there is nothing good in the center, if you know what I mean. I am constantly aware of my own failure and the unkind thoughts that rise in me with every demand to serve or to set myself aside. I am painfully aware of who I am, and the sinfulness to undergirds that. Thinking that this is what my family will face if I am stripped to my core by dementia is terrifying! I never want to be that person, not to anyone else and definitely not to the people I love the most.
This is when I become aware of how important it is to consistently submit to Christ and to the work of sanctifying grace. I find great comfort in the thought that I can let the Holy Spirit and grace so transform me that nothing but grace will be left at the center; that in the absence of any other part of my personality, what will be left is love, kindness, and mercy. Strangely, I find comfort in the idea of sitting in a memory care unit, sweetly thanking my caregivers and my family, even when I no longer know who they are.
I suppose that I should be grateful that I had this realization while I am still relatively young and healthy, while I am still able to allow Jesus to transform me from the inside out. For that, I thank my father, because I might not have realized this otherwise.
Having said that, I am also praying for a strange dichotomy to occur in my mind. I want to consign my father’s behavior to dementia’s choice so that I can keep visiting him and love him despite his behavior and the pain it causes me. I also want to remain thoroughly convinced that I need to be transformed at the very center to avoid my father’s fate, so that I do not give up the quest for sanctifying grace and Christian perfection in this life. And if my father’s legacy is that he causes me to seek after grace and perfection, that would be a fitting tribute to his life, don’t you think?
*** We were assisted by SeniorPlanning.org, an organization that helps families with a variety of housing needs for seniors who cannot live without assistance. They charge no fees to the family and are comprehensive in their services. I cannot recommend them highly enough and encourage you to take the time to acquaint yourself with them. They are sensitive to each family’s needs and do not try to fit every family into the same solution. Their help saved us weeks of trying to find our way to the right memory care facility for my father.