In the last few years of my grandmother’s life, she experienced significant cognitive decline. She began to talk like she was back in the 1950s. Her memories of that time were sharp, but she couldn’t alway remember who I was. She stopped eating well and would only drink coffee. We never received an official diagnosis, but all the signs pointed to dementia. When she died, my brother was able to hold her hand and read a few of her favorite scriptures to her. All in all, I think she was relatively comfortable those last few years, but I can’t say that with certainty. All I know is, a lot of people with Alzheimer’s and dementia don’t receive as much care or as good of care as my grandmother did.
For this week’s devotional, I’d like to talk about the difficult dynamic that exists today between caring for our family and friends with Alzheimer’s/dementia and curing these diseases. The two — care and cure — aren’t always the same, and I wonder if the Bible and Christian history have any guidance for us here.
Holy God — our Creator, Redeemer, and Sustainer — guide us this morning by your Word and your Holy Spirit, so that in your light we might see light, and in your truth, we might find freedom, and in your will, we might truly discover peace through Jesus Christ our Lord. Amen.
Just then a lawyer stood up to test Jesus. “Teacher,” he said, “what must I do to inherit eternal life?” He said to him, “What is written in the law? What do you read there?” He answered, “You shall love the Lord your God with all your heart, and with all your soul, and with all your strength, and with all your mind; and your neighbor as yourself.” And he said to him, “You have given the right answer; do this, and you will live.” But wanting to justify himself, he asked Jesus, “And who is my neighbor?” Jesus replied, “A man was going down from Jerusalem to Jericho, and fell into the hands of robbers, who stripped him, beat him, and went away, leaving him half dead. Now by chance a priest was going down that road; and when he saw him, he passed by on the other side. So likewise a Levite, when he came to the place and saw him, passed by on the other side. But a Samaritan while traveling came near him; and when he saw him, he was moved with pity. He went to him and bandaged his wounds, having poured oil and wine on them. Then he put him on his own animal, brought him to an inn, and took care of him. The next day he took out two denarii, gave them to the innkeeper, and said, ‘Take care of him; and when I come back, I will repay you whatever more you spend.’ Which of these three, do you think, was a neighbor to the man who fell into the hands of the robbers?” He said, “The one who showed him mercy.” Jesus said to him, “Go and do likewise.”
Give strong drink to one who is perishing,
and wine to those in bitter distress;
let them drink and forget their poverty,
and remember their misery no more.
Speak out for those who cannot speak,
for the rights of all the destitute.
Speak out, judge righteously,
defend the rights of the poor and needy.
“Praise the One Who Breaks the Darkness” — Rusty Edwards (YouTube video for in-home worship: Click here for Video)
Praise the one who breaks the darkness
With a liberating light.
Praise the one who frees the prisoners,
Turning blindness into sight.
Praise the one who preached the Gospel,
Healing every dread disease,
Calming storms and feeding thousands
With the very bread of peace.
Praise the one who blessed the children
With a strong yet gentle word.
Praise the one who drove out demons
With a piercing two-edged sword.
Praise the one who brings cool water
To the desert’s burning sand.
From this well comes living water,
Quenching thirst in every land.
Praise the one true love incarnate:
Christ who suffered in our place.
Jesus died and rose for many
That we may know God by grace.
Let us sing for joy and gladness,
Seeing what our God has done.
Praise the one redeeming glory,
Praise the One who makes us one.
“How would you like to die?” That’s the big question Tia Powell, the director of the Montefiore Einstein Center for Bioethics at the Albert Einstein College of Medicine, asks in her refreshing and yet sobering book, Dementia Reimagined. I said earlier that my grandmother, from everything we could tell, seems to have had a relatively positive experience those last few years of her life. So did my wife’s grandmother, who at one point toward the end of her own struggle with dementia leaned over and whispered to Sara, “I just want you to know, I know who you are.” It was a touching moment, even if the person she thought she saw when she looked at my wife was most likely not her but my mother-in-law.
That said, our grandmothers appear to be the lucky ones. Ask around, and the stories become overwhelmingly less cheery. Tia Powell recounts the final few years of Mrs. D’s life, whose dementia was severe and advancing. Initially, she had welcomed help, both from a local family member and from professional caregivers, but after a while, Mrs. D became paranoid. When a doctor was finally able to coax her way into Mrs. D’s apartment, what she found there was heart wrenching. Mrs. D had barely eaten for months, and she had stopped bathing altogether. Garbage and stacks of paper lined the walls. Even the plumbing looked broken. The windows in the living room had been boarded up, a testament to her paranoia, and it seemed the only company Mrs. D enjoyed was a laundry basket full of wild pigeons. One can imagine the smell.
It’s tempting to think that money and insurance will ensure a higher quality of living (and dying) than Mrs. D experienced. Unfortunately, that’s not always the case, and even if it was, the problem would still remain that only a small percentage of people with dementia have those kind of resources. John Siegal, the former Chicago Bear who was selected to three Pro-bowls and led a successful dental practice after retiring from football, had excellent insurance and significant personal savings, but after years of struggling with dementia, including three on hospice, he was only months away from qualifying for Medicaid at the end. Dementia had taken it all.
And yet, maybe the scariest thing about dementia is not the costs of it. It’s the fact that we have no cure, and we’re not even close. So, what do we do? What can we do?
For decades, we’ve invested billions of dollars into discovering a cure for Alzheimer’s and other forms of dementia. The vast majority of our public and private funding has gone there. Embarrassingly less, however, has been invested in what is called supportive care — food, shelter, professional caregivers and their education, the type of things that are most needed to help folks who already have the disease live and die well.
As Christians, this should alarm us. At the heart of our teaching is love and hospitality. There’s a good reason why the root of that word is “hospital.” Like Luke 10:25-37 and the story of the Good Samaritan make explicit, our hospitality involves more than just inviting people over for dinner. It includes taking care of those who are sick. Remember Jesus’ words to the sheep in Matthew 25:34-36? “Then the king will say to those at his right hand, ‘Come, you that are blessed by my Father, inherit the kingdom prepared for you from the foundation of the world; for I was hungry and you gave me food, I was thirsty and you gave me something to drink, I was a stranger and you welcomed me, I was naked and you gave me clothing, I was sick and you took care of me, I was in prison and you visited me.’”
Historically, we’ve been pretty good at this. Not only was the church the creator of the “modern” hospital, but we also made a name for ourselves by sacrificing our own lives and livelihoods for others during times of plague. When an epidemic struck the Roman world around the year 260, one church leader had this to say about the bravery and hospitality of so many Christians:
Most of our brother-Christians showed unbounded love and loyalty, never sparing themselves and thinking only of one another. Heedless of danger, they took charge of the sick, attending to their every need and ministering to them in Christ, and with them departed this life serenely happy; for they were infected by others with the disease, drawing on themselves the sickness of their neighbors and cheerfully accepting their pains. Many, in nursing and curing others, transferred their death to themselves and died in their stead.
Thankfully, dementia is not contagious in the same way the plague or the coronavirus are, but the need for care is similar and the toll such care takes on the caregiver can be equally sacrificial. Family members who care for loved ones with dementia have a tendency to die before those with the illness do. Needless to say, they need care, too.
Proverbs 31 recommends giving “strong drink to one who is perishing, and wine to those in bitter distress” so that they might “forget their poverty and remember their misery no more.” This is even considered an act of justice. (See verses 8-9.) But, it is not at all easy to know how to do this today, especially with those of us who have dementia. How do we care well for our loved ones? Is it better to keep them at home or move them into a memory care facility? Should family members be the primary caregivers, or should someone else? At what point should we make such a decision? What do we do when they get paranoid or violent? What are the — often literal — costs and benefits of different kinds and qualities of care? And, how, after all of this is figured out, do we care for ourselves as caregivers?
Fortunately, we have resources. In a few weeks, we are going to be talking with Teresa Youngstrom, a dementia specialist and the owner of A Better Approach to Memory Care, which is based right here in Cincinnati. Teresa will be talking about many of these issues and more in a recorded interview with me, Bill Holliday, and his son, Dr. Michael Holliday, an Assistant Professor of Family Medicine at UC Health. Once the interview is complete, we’ll put it up on our website. I invite you to check it out.
Holy God, we pray for those among us with Alzheimer’s and dementia. We pray for a cure to be found, but we also pray for a better system of care with more and better resources. Give us the grace and the strength to love and care for them — and ourselves — well. We ask this in the name of our Lord and Savior, Jesus Christ, who lives and reigns with you and the Holy Spirit, one God, now and forever. Amen.
- Tia Powell, Dementia Reimagined: Building a Life of Joy and Dignity from Beginning to End (New York, NY: Avery, 2019), 176-7, 203-4.
- Rodney Stark, “Epidemics, Networks, and the Rise of Christianity,” Semeia 56 (1992): 166.