“My story is important not because it is mine, God knows, but because if I tell it anything like right, the chances are you will recognize that in many ways it is also yours… it is precisely through these stories in all their particularity, as I have long believed and often said, that God makes himself known to each of us more powerfully and personally. If this is true, it means that to lose track of our stories is to be profoundly impoverished not only humanly but also spiritually” – Frederick Buechner
In the last few months I have heard of several more people with families members now marked by Dementia or Alzheimer’s. Several more families now watching the person they love diminish before them. Several more families wondering how to care well for these loved ones, how to walk through this new season without becoming exhausted and overwhelmed.
Those that are closest to me, I refer to my Dad. The husband of one of these I told to call my Dad because he has walked through this with a wisdom and a grace that give strength. Not perfectly, and he will say he has done so with nothing remarkable…but the truth is he has shown all of us how to walk well in the season of suffering. I’ve learned from him. His story gives strength to those who hear it; they know they are not alone and that this challenge is not impossible.
The reality is that so many are touched by some form of this disease. The quotation from Buechner above is often used, mostly because of the deep truth it tells. We need to hear each others’ stories because they tell us more about our own situation. They give us strength in the midst of our own fears or our own uncertainty. We need to hear the testimony of those who have walked a little further in the struggle than we, and can tell us of God’s grace.
In the Book of Revelation, when it tells of the accuser of the saints being conquered, this is said:
“And they have conquered him by the blood of the Lamb and by the word of their testimony, for they loved not their lives even unto death” Revelation 12:11
Our testimony carries weight.
Our stories carry weight.
So. To those friends who have just begun the journey of Alzheimer’s or Dementia, to those who are overwhelmed with fear and sadness: God is still there. God is still in the midst and His grace is present. The testimony of the saints who have walked this way proclaims that.
Here is what my testimony in the middle of this journey proclaims:
It’s okay to be sad, to be overwhelmingly saddened by the loss of the personality of the one you love. To grieve deeply as life events unfold and you are aware that this person who is present is not completely with you…and to know how different the situation would be if they were. To know how they would love your children, to know how they would laugh and would rejoice over your accomplishments.
It is okay to grieve, in the midst of the journey…but know you cannot grieve the entire time. There will be moments of laughter in the midst of this craziness. There will be moments of light.
Dad: “Good morning, my dear. I love you.”
Mom: “Well. What do you want?”
Brother: “Mom, did you like that restaurant?”
Brother: “Would you like to go back?”
Mom: “Well, not tonight!”
There will be glimpses of that personality that pop up. And they will be all the more treasured because they are rare and they will bring a flood of memories of who that person is who is in your midst still.
Laugh and rejoice in those moments, and don’t be afraid to laugh.
This is a long and tiring mourning. This is a slow losing of the person in front of you: pace yourself. Rejoice when you can, and mourn when you need to. Then look for God in the midst. See Him in graces small and large. In family coming together in the midst of struggle. In strength you didn’t know you possessed. In appreciating this person in ways you might never have done without this change.
And realize that as we weep over this disease and what it does, we weep with God. This wounding of creation, this loss…I truly believe that He grieves with us. As Creation groans…as we groan. We cling to the promise of new life, of new creation. Of grace and of a Creator who cares and who intervenes and who redeems. We cling with hope as we hear the testimonies.
Tell stories. Tell of the one you love and remember them well, in the midst of the struggle. Write down the stories and remember. Know that you are not alone and pay attention. Know that eventually your testimony will bring strength to someone.