A Space for Grace – Son Light in the Darkness of Dementia
Psalm 139 is God’s presence in our existence long before we had memory, movement, speech, and understanding. Before we were, He was and is already in the womb… that sacred place where nothing is hidden, unseen, unknown, unspoken, or unloved from Him. God’s presence in our created being is described as being with us in our innermost parts; woven together; the way we think and feel; knit together in an unformed body; put together.
I believe these words are referring to our brain – His divine organ created within us for every aspect of our being. I encourage caregivers and loved ones diagnosed with dementia to see this passage as one of comfort when the “dementia journey” hovers over like a dark cloud, such that this divine organ is no longer working well. Caregivers and those diagnosed with dementia often report feeling hidden, unseen, unknown, unspoken, and unloved – possessing lost memories, words, and life stories, hidden and unknown understandings, unspoken thoughts, broken bodies, and fears in the dark.
Our spiritual enemy wants us to believe that we are in that place alone… that there is no SonLight available to us – the Light of the Son of God! That enemy is wrong according to Psalm 139. God was present in the amniotic breath in the womb, and he remains in the powerful breath exchange that sustains us in this world. When you focus on the practice of dementia-specific strategies for memory, movement, speech, and understanding, you are bringing a moment of SonLight and Breath of God not only to the person diagnosed with dementia, but also to the caregiver, so that each of them in their own way can experience a spiritual reminder of the innermost connection with God.
How can you do that in your church culture, greeting ministries, connection groups, adult ministries, Bible classes, or pastoral visits? Utilize Dementia-Specific strategies to respond to a feeling that a person with dementia is likely experiencing. God has designed and wired our brains to respond to unknowns with a fight, flight, or freeze response. The challenge for us is to learn to communicate His calm and peace, not our logic, in those moments of confusing darkness. Read Psalm 139 through the lens of dementia understanding, and you’ll see that God is already there, showing us how to connect with a little SonLight.
He has searched in the midst of my confusion and yet knows me: so remind them who they are.
He is there whether I am up or down: be a presence of calm despite the anxiety of a moment.
He brings meaning to my far-off and confusing thoughts: validate what they might be trying to say even if you aren’t certain and it might be inaccurate.
He is familiar with me and where I am even when I am not: acknowledge your relationship and role in his/her life.
He knows my words even when I don’t: go along with their story even if the words aren’t correct.
He surrounds me in moments of insecurity: be a physical presence with a smile of safety.
He is light in the darkest of darkness: walk alongside them and show the way.
Here are some other strategies:
A person with dementia may think something like, “When I walk into your building or room, I am likely feeling overwhelmed, uncertain, and embarrassed because I may not find this familiar, recall your name, or why I am there.” What can you do? Always greet a person with dementia by FIRST stating your name and role in his/her life. Describe who you are first and what your relationship is – each and every time, with a huge smile on your face – even if you just did it 10 minutes ago. Like this: “Hi Sally, my name is Nora and I’ve been lucky enough to be your friend for a long time.” Verbalize whatever is true for you, and wait for a smile or other body language that communicates it’s okay to go closer.
Sing or hum an old or childhood Bible school or worship hymn so that muscle memory can be prompted – it might set the mood for someone with dementia.
Greet caregivers with a hug and let them know that you understand the energy that has likely already been spent just getting in the door.
Offer to sit with family members, and be prepared to walk or help during the worship service, so that the family members can worship. Help guide people with dementia in those routine parts of worship that may be forgotten from time to time, like communion, prayer, when to stand, when to sit, or when and how to greet others. Give family members some time and space to be loved on by others.
No matter what a person with dementia may say, validate their love for God and desire to please Him. Don’t ask them to remember how they have served God in the past; if you know, remind them with a story of how they’ve done that. Tell them often that God loves them, and that they are here to worship Him.
One last note: a person with dementia won’t remember the details of an event but will always remember the experience of an event. Worship is an innate experience that was divinely planted in the womb, so remind our loved ones with dementia of Psalm 139:17: how precious they are to God, and how vast is the sum of His thoughts for them!
