This article appears in the Volume 27 - Number 2 - Winter 2020 - Healing for the Hurting Church edition of the Calvin Seminary Forum
By Mary VandenBerg
Dementia. Few diagnoses carry the level of fear and dread that this little word does, both for the one diagnosed and for that person’s loved ones. Although Alzheimer’s is perhaps the most well-known form, dementia covers a wide range of conditions characterized by brain changes. These conditions include a loss of cognitive ability that eventually impairs one’s ability to function.
The diagnosis of dementia brings with it not only fear and dread, but a steady stream of mixed emotions. Initially, the person diagnosed and the loved ones may be in denial, refusing to recognize the tell-tale signs that something is seriously amiss. Instead, they may make excuses for the person’s behavior – she’s always been a little forgetful; he’s always been a bit grumpy; he’s just getting old.
Eventually, however, denial is no longer possible. Maybe it’s a phone call from the police that Dad is at the grocery store but does not know how to get home. Maybe Mom walks out of her apartment with very little clothing on because she is looking for her closet. Maybe a parent who was quiet and unassuming has become violent, hitting and kicking those around her for no apparent reason. Incidents like these become wake-up calls, especially for loved ones.
As incidents pile up, loved ones begin to move from denial to a sort of in-between state. They are not fully accepting of what is happening to the person they love, but they can no longer deny it. This move toward acceptance becomes even more difficult when the person they love remains in denial about the reality of their condition. The loved ones experience loss, but that loss is ambiguous. They cannot precisely lay a finger on the loss nor describe it. Their loved one is still there, right in front of them, and yet in a way she is not there too.
With time, the loved ones will likely come to recognize a new normal. Their loved one has changed in profound ways, but they still see glimpses of the person they knew before dementia. As they begin to define the loss, they come to terms with the loss and adapt to the current circumstances of their loved one’s life. The problem is that this “new normal” is temporary. In many cases, just as family members are getting used to dealing with their loved one under new circumstances, the conditions change and the cycle of denial, ambiguity, and accepting the new normal begins again.
One constant companion throughout this process is grief. As with losses, grief is ambiguous. Grief itself can include feelings of anger, sadness, anxiety, and regret as well as guilt over those feelings and questions about how to grieve the loss of a person who is not physically gone. The cyclical nature of the losses in dementia is soul crushing. It can feel like one has entered a barren place or wilderness with no oasis in sight.
So how does one survive in the wilderness of dementia? Scripture and the Christian tradition offer some insights. One interesting depiction of wilderness life is given to us in the story of God’s deliverance of Israel from Egypt. The first thing to notice in this story is that Israel is not passive in their relationship with God. Israel complains…loudly. They complain about the loss of the supposed comforts of Egypt. They complain about the lack of food and water. This seems entirely understandable. In this sea of humanity heading into Sinai, I can imagine parents with small children as well as hungry teenagers. I imagine pregnant women, some on the verge of giving birth or having just given birth. I imagine elderly women and men bent over with age. This is a group much like the folks in your local church, people of various ages and stations in life. After the excitement and adrenaline of the exodus is over, they begin to realize that they are heading out into a place of uncertainty where their only hope is a promise.
For the ancient Israelites, the wilderness was a place of fear and death. It was characterized by deficiency and lack. One would not expect to survive for long, let alone flourish, in this place. In the wilderness the Israelites’ faith in God’s promise will be tried. But in and through those trials there is potential for growth.
Wilderness spirituality is a spirituality that turns one’s focus away from what is known and expected away from what can be controlled. The wilderness opens God’s people to experiences of radical dependence and vulnerability. The desert monks knew that when we are stripped of everything, of all the distractions of life, we gain an opportunity to become more keenly aware of God’s presence, a presence that at times one may want to escape and at other times one will earnestly seek (Ps. 139).
The wilderness of dementia is also a place of fear and deficiency. It leaves its inhabitants raw and vulnerable. It elicits cries for what we have lost; cries for the relationship, the person, and even the quotidian (or ordinariness) of daily life. The wilderness of dementia pushes us to experience our relationship with our loved one in new ways. We are forced to let go of our control of the relationship and experience the relationship as it evolves on a nearly daily basis.
Dementia will also drive us to experience our relationship with God in new ways. In the desert one begins to understand what it means to lament. We do not just speak the words of the psalmist. In the core of our being we feel the cry, “how long O Lord!” These inspired words give poetic expression to the multiplicity of confusing and disconcerting emotions. How long must my loved one suffer? How long must I endure this tortuous journey? How long before you do something about this? In his book Rejoicing in Lament, Todd Billings writes that at the heart of lament “is hope in a God who is both good and almighty—the Lord who is faithful to his promises” (61). Indeed through the protest and complaint of lament, one simultaneously confesses that her only and ultimate hope is in God. The cry of lament is a cry of faith.
Faith as well as solace can also be found in the surprises of the wilderness. In her book Dakota: a Spiritual Geography, Kathleen Norris compares the wilderness experience of the monastics to life in the Dakotas. She writes that the deprivations of the wilderness life tend to “turn small gifts into treasures” (18).
For those living in the wilderness of dementia, these treasures are often surprising. Maybe your loved one begins to sing silly songs that are completely out of character for her. Maybe after many visits with little evidence of recognition, one day your loved one looks up and says your name. Another time you see a smile that looks just exactly like the smile your loved one always had,providing a vision of the past. Just as the Psalms of lament most often mix praise with grieving , so also the lament for ongoing loss can be mixed with rejoicing and gratitude for these small treasures.
Perhaps one of the biggest surprises of Israel’s wilderness journey was that in the place of death and privation, they were accompanied by the presence of the Source of Life – YHWH. What could be more surprising than that in this dry and barren land, they experience God. This is a hard truth. Consider the cross. It seems that it is in suffering that God makes himself most known. Paul writes to the Romans that we rejoice in our suffering because “suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us” (Rom. 5:3-5). This character-forming process is not a self-help project, however. It is always done in the company and power of the Holy Spirit. The wilderness of dementia is a place of lament and surprises. It is a place to practice perseverance and build Christ-like character through the power of the Spirit. Most importantly, the dry and barren desert of dementia is a place to walk the difficult road of, in the words of St. Francis, dying to ourselves while being born to eternal life, our ultimate hope.
This article appears in the Winter 2020 edition of the Forum. Download this issue.