“I think it right, as long as I am in this body, to refresh your memory,”
2 Peter 1:13
“I don’t know who I am?”
This was the main of several questions that my uncle asked me one afternoon during a particularly bad episode of his mid-afternoon sundowning.
He is my last-living immediate family member, as I am his. Because of vascular cognitive impairment and possibly Alzheimer’s dementia, he resides in a memory care unit. I have not seen or hugged him in over a year due to the pandemic.
We do talk every day though, at least two to three times. Well, almost every day. Sometimes he doesn’t remember how to use the phone, or know where to find it, or understand that the sound it makes means he has a call.
“I can’t get out of the phone” he told me recently, “What do these square things with numbers represent?” In under two years he went from using a smart phone to a basic-function mobile phone to a landline memory phone.
My name is printed in large letters on one of the buttons, and he pushes that button, sometimes during the middle of the night, asking where he is and how did he get there, or what he should be doing. My job, because I love him, is to tell him his story as many times as he needs to hear it.
I remind myself when he calls during times it’s difficult to speak, that my job, because I love him, is to tell him his story as many times as he needs to hear it, and to remind him of our family that is gone, to recall fond memories, to share short stories of events in my life that might stimulate his thinking or lift his mood.
Once he said he was surprised as bad as his memory was that he remembered who I was. But I know he remembers me because despite time, distance and dementia he loves me. He tells me so during our bedtime goodnight calls, something he felt was too personal to say out loud before the memory loss. I know his love and caring to be stronger than the dementia. Each time I share an event, health issue or chore that is troubling me, he offers to help and asks what he can do for me, not realizing the impossibility of doing so.
“I don’t know who I am,” or “Why am I still here?”, he’ll ask me sometimes seeking to have spiritual gaps filled. These subjects are tougher to address, but I tell him from my heart that his life purpose must not yet be finished, and that I am grateful to still have the opportunity to speak with each other.
My mother also suffered from vascular dementia in her final months but remembered me, and my father, because of love’s memories. And, although she too asked why she was still here when she was ready to go “home” to God, she was always aware that her purpose while present on this earth was to pray for others.
So I gently suggest to my uncle that maybe he is here to pray like his sister did (or to listen to me even when I chatter). I remind him of how the last Christmas he went to services with us he remembered the liturgy for the Eucharist – without using the prayer book – that surely there was a special significance for him in remembering.
When he questions, I try to give short, comprehensible-for-him answers. Unlike some dementia patients, my uncle prefers an explanation of the medical reasons for his cognitive problems. He used to be a scientist, a physicist and a near genius who invented and built his own electronics before they were readily available. Maybe that makes his need for facts more understandable.
The esoteric questions are more difficult to satisfy. Regardless, I try, and respond with answers I hope the Holy Spirit put into my mouth. It is heartbreaking, frustrating, repetitively mind-numbing. Each time I lose another, small piece of him it is a living, daily grief.
But it is the holy task God has laid before me for now. I am my uncle’s memory keeper, his touchstone to reality. I repeat, my job because I love him is to tell him his story as many times as he needs to hear it.
God help me do this. God help me to answer his questions, to stay patient and kind and to help him keep the good memories alive. God help him to feel my love and concern. God help you as well if you and yours are likewise in this situation.
Also I pray that someone will do this for me, for each of us, if the day comes when we forget. And if we forget all else, may we remember, or remind our family member, that God loves us and remembers us always and forever.
“…according to your steadfast love remember me…”
Gracious God, be with all those struggling today with symptoms of dementia in its many forms; mood changes, memory lapses, confusion and helplessness.
May they know in their hearts your comforting embrace amid their daily frustrations, and continue to realize, as names and memories fade, that they are still loved by family, friends, and especially by you.
— John Birch,
Copyright © John Birch, 2016. If reproduced anywhere else please include acknowledgement to the author/website
Globally, there are about 50 million dementia patients. Each year approximately 10 million new cases of dementia are diagnosed
In the U.S. alone, around 11 million family members serve as unpaid caretakers for their loved one.
Alzheimer’s Assoc.; World Health Organization
Prayers for those suffering from dementia, for their health care workers and family caretakers can be found at:
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