Facing the Pain of Dementia
My 83-year-old mother has dementia. To help me work through the pain of this living death, I recently gave her a gift she was not able to receive: a letter commemorating her 10th anniversary in the nursing home.
Ten years ago this past fall is the day that Dad calls "the worst day of my life.” It’s the day he had to concede defeat in his long, hard struggle to care for my mom and move her into the Alzheimer’s unit of the local nursing home after 51 years of marriage. He still speaks of that day with great sadness, regret and, unfortunately, shame.
Observing my dad’s deep pain and wrestling with my own, I’ve come to some conclusions about facing the pain of dementia in those we love.
While it is not an inherent strength of mine, the first and most significant thing I can say is to face the pain of dementia fully and feel it deeply. Dementia is layered with multiple levels of emotional agony, especially for the primary caregiver. My dad has talked to and fed my mom three meals a day, missing only those few days in 10 1/2 years when we insisted he come and visit his children and grandchildren. However, even on those days away, his thoughts were never far from his wife. When others note his intense focus on my mom, he jokingly says, “I spent $2 on our marriage license, and I’m going to get my money’s worth!” My dad’s wry humor has helped him to face his daunting task.
While my own pain is very pale compared to my dad’s, it’s still very real. It has been so painful for Dad and us to look into her familiar eyes and see a look of total unfamiliarity. She is still with us bodily, and we can pat her, kiss her, and hold her hands. But in a very real sense, Mom is not with us. So we are left with the painful irony of dementia: simultaneously being with her and yet not being with her. It is the unique pain of a living death, an open wound that continues to throb day after day.
Over the years I have often wondered if it was as painful from my mom’s perspective. Has it been deeply sorrowful to lose her recognition of her husband of five decades? Is it troubling to her that this man, who dotes on her three times a day, has the same status as a health care worker? Has it been painful to forget her two children and their mates? Has she wept over the fading away of her four lovely grandchildren? As I weep for us and our loss, I don’t want to forget to weep for my mom and her losses. She has lost almost everything precious in this life over these past 10 years.
Another decade-long lesson has been to wrestle with the hard questions surrounding dementia. For example, I’ve often wondered what my mom’s long-time relationship with Christ has been like as her brain has lost many of its capacities. Has she continued to enjoy His loving care and the presence of the Holy Spirit? Has God fathered her and cared for her, Spirit-to-spirit, in spite of those damaged brain cells? Has she experienced Jesus’ promise to never leave and forsake her in the depths of her soul? Does her soul still have the capacity to will — to choose to trust God — in spite of her dementia?
My sense is that she would probably answer “yes” to all of my questions if she were able. I lean that way because we have seen her soulish qualities bubble up in her spontaneous eruptions and expressions of dry humor that transcend a dysfunctional brain. My sense is that her inabilityto express an awareness of God’s tender presence with her has had no effect on His abilityto be with her in her struggle. My hope and prayer is that she has never really been alone in her dementia these 10 years.
The harsh reality is that dementia brings open-ended pain and many unanswered questions this side of heaven. These circumstances have driven us to cling to the reality of our hope in Christ. Quite frankly, there has been no other meaningful option over the past decade. In these final words of my letter to my mom, I try to capture the vividness of our hope as Christians in facing the pain of dementia.
Dear Mother, One of our great expectations in the midst of all of the losses is that for you “to live is Christ, and to die is gain.” We know that when you depart and are with Christ, that this “is very much better.” We long for you to leave behind your earthly tent, decaying as it is, and to be clothed with your dwelling from heaven. Through our tears we fix our hope on your sowing of your perishable body in weakness and dishonor so that God can raise it as an imperishable body in power and glory. Anticipating our separation from you, we long for the moment, “in the twinkling of an eye, at the last trumpet” when all of us in Christ “will be raised imperishable, and we shall be changed” and “Death is swallowed up in victory.” Mom, we love you so much that we want this better state for you. Ironically, that entails seeing you experience the defused victory and sting of death. As the time of your death draws near, we pray, dear Mother, that you have the unshakeable comfort and confidence that God Himself has said, “I will never desert you, nor will I ever forsake you.” You are not alone. May His Spirit Whom He has invested in you as a guarantee of the redemption of your body give you a deep, abiding, soulish peace.
And so, Mom, through my tears I give this remembrance to you even though you cannot comprehend it. I picture you in your little brown wheelchair and Dad trying to pry your head up to drink some cranberry juice or feed you some stiffening mashed potatoes.
Perhaps today will be one of those increasingly rare moments when you recognize him for a moment and start to smile. He lives for those moments. We all do. I love you and miss you, dear Mother.
Walt Russell is a New Testament professor in Biola’s seminary, Talbot School of Theology.