Faith and Alzheimer'sby Carol Bradley Bursack Caregiver
How can faith help both caregivers and people with dementia get through something that makes no sense even to those who believe in a loving God - or maybe especially to those who believe in a loving God?
Many people have asked me this question. My own spiritual beliefs have been vital to my caregiving life, but I wanted to give people more depth than I could provide on my own. With that in mind, I asked Dr. Benjamin Mast, a licensed clinical psychologist, Associate Professor in Psychology & Brain Sciences and Geriatric Medicine at the University of Louisville author and also author of "Second Forgetting: Remembering the Power of the Gospel during Alzheimer's Disease," to give us some answers from his perspective.
CBB: Dr. Mast, how can we expect people in the trenches of providing care for someone who doesn't even recognize them to feel God's comfort and promises?
Dr. Mast: God's comfort and promises aren't always experienced as warm, fuzzy moments, especially in the midst of great difficulty like caregiving. Instead, we might experience God's power as the strength to continue on and to trust that he will provide, even though things are still very hard. The Psalms are filled with cries of suffering, a longing for mercy and help from the Lord. The first nine verses of Psalm 77 give an example of someone crying out to God from the trenches. These are cries that many caregivers identify with - have I been forgotten? Where are you God?
God's comfort is realistic. He doesn't call us to deny or ignore our suffering, but to bring it to him and to receive grace. God meets us where we are, even when we feel distant, weary, or even guilty. Many caregivers feel guilt because they can't do it all, or because they needed to put their loved one in a nursing home. Some feel a frustration over their own limitations. Caregiving brings us to the end of ourselves in a very real and painful way. In caregiving we learn that we cannot do it all on our own.
God calls us to come to him. Listen to the compassionate words of Jesus:
"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light." Matthew 11:28-30
Here is a simple prayer that flows from God's invitation: I am so weary. Where can I learn from you today, Lord? Help me find rest for my soul
CBB: That's a comforting message for caregivers, Dr. Mast. How do we offer spiritual comfort to those who have Alzheimer's disease and other types of dementia?
Dr. Mast: Offering spiritual comfort to people with dementia involves (1) approaching them in empathy, love and gentleness, and (2) helping them stay connected with their faith tradition and practices.
To effectively offer spiritual care we need to understand the individual person - not just their current situation and dementia, but also their longer life story. Who are they? What is important to them? What do they believe? What is their specific faith tradition and practices? Even within the Christian faith, there is considerable diversity in terms of beliefs and practices.
These practices differ in terms of the use of liturgy, the songs they sing, and the ways they worship. Some raise hands in worship and dance in the aisles. Others bow in quiet meditation. The person who grew up in quiet meditation may be put off or even upset by a louder, active form of worship. This is particularly true in dementia and so we need to mindful of their history.
CBB: As dementia advances people become harder to reach emotionally. Do you or others offer different techniques to provide spiritual sustenance to those with early stage dementia, or mid-stage or late-stage dementia?
Dr. Mast: This is where understanding the person and their tradition is so critical. The longer a person lives with Alzheimer's disease or another dementia, the more we need to rely upon and maximize use of their relatively spared memory systems including their long-term autobiographical memory (their story), procedural memory (well-worn practices and habits), and emotional memories (memories with strong emotions or memory for the way things felt). There is good evidence that these are relatively spared memory systems in comparison to memory for recent and new information.
We can use these systems to provide spiritual care by:
Listening to or retelling parts of the person's story, including their story of faith
Using multisensory input (sights, sounds, touch, smell) to prompt spiritual remembering. For example, communion involves touch, sight, and taste, not just hearing the words of a pastor or priest.
Incorporating music, especially well-known songs and hymns that the person sang and heard many times earlier in life. Many caregivers have shared stories with me about how their loved ones connected in meaningful ways with well-known songs of faith.
Familiar Bible passages - Reading these words of hope and encouragement are a vital connection to our faith journeys, even into advanced dementia.
Whichever methods we use to reach them, they should match the person's faith tradition to effectively utilize those spared memory systems. Use the translation of the Bible that they used for most of their life and incorporate the songs and scripture passages that they know best or that are most meaningful to their story.
Finally, and perhaps most importantly, do whatever you do in love. Our love often speaks louder than words. In fact, recent research on emotional memory suggests that even when people with dementia cannot remember what we said, they can remember how we made them feel.
CBB: How do you help caregivers learn that while they may feel alone and forgotten God is there for them?
Dr. Mast: The reality is that caregiving is often a lonely and thankless job. Most caregivers feel that they don't have enough support and that all the care needs fall on them. Many tell me that they feel like no one really understands how difficult things are. Some feel weak and not up to the task on some days. They have had to sacrifice so much for another person who doesn't seem to recognize all that they have done. It's a humbling and painful experience.
When we want to be reminded that we are not alone, we can look to the example and words of Jesus, who came to us in humility and in sacrificial love. Jesus did some of the lowest tasks such as washing his disciple's feet (see John 13) and encouraged us to do likewise. Jesus suffered pain, out of love for others and for their benefit. Certainly Jesus understands what it is like to be humbled, to sacrifice and to not have people recognize or thank him for it.
But, Jesus left us more than an example. He gave us an invitation and a promise. He called us to come to him with our burdens, loneliness, and even our doubts. He promised to give us what we need and to meet our ultimate need through his sacrifice. When we feel weak, he tells us, "My grace is sufficient for you, for my power is made perfect in weakness" (2 Corinthians 12:9). If you, the caregiver, feel alone, pray for his grace and presence to surround you today.
CBB: How do we help caregivers who may have become bitter over the experience of never-ending caregiving understand that their attitude can make a difference? These people often feel beaten and misunderstood.
Dr. Mast: We should always listen first. Any spiritual support we offer to people in the trenches of caregiving should come only after we have listened and made genuine attempts to understand what they are going through.
Even when we try to speak helpful words in love, they often fall flat if we haven't taken the time to listen. How can I know what words of encouragement to offer if I don't know how you feel or what it is like to live your life for a day? How can I know how to serve you or hope to help carry some of your burden if I don't really know what you need? Sometimes listening without judgment or comment can be the most loving thing we can do for a caregiver. Listen and stay present on this difficult journey.
CBB: Was there any one incident that convinced you that you needed to write this book?
Dr. Mast: I have met so many people of faith who have developed Alzheimer's disease or another dementia and who are now struggling both with practical care and theological questions. "Where is God and why is he letting this happen?" Others worry that their loved one will forget God and their faith. There are many questions and painful experiences related to faith and dementia and I wanted to offer a practical resource to provide hope these individuals and families.
I have also met many family caregivers who feel that their church has forgotten about them. When they most needed support, the church and those people they had been closest to were not there for them, often because churches don't know how to step into the need.
I want to see churches better equipped and educated about Alzheimer's, dementia, and caregiving so that when the need arises, they will know how to lovingly step in and help take care of the person with dementia and the caregivers. I wrote "Second Forgetting" to help address both of these issues.
CBB: If you had one minute to give someone hope what would you say and/or do?
Dr. Mast: When we are dealing with Alzheimer's disease and dementia, we often feel forgotten, whether we are a person with dementia or a family caregiver. God tells us that he will never forget us or stop caring for us. Isaiah 49:15-16 says, "Can a mother forget the baby at her breast"¨ and have no compassion on the child she has borne? Though she may forget, I will not forget you! See, I have engraved you on the palms of my hands"" Even though we often forget God, he will never forget us!
CBB: Thank you, Dr. Mast, for your comforting words of faith during this time that focuses on love and acceptance. While your answers to our questions may seem Christian specific, the soul of your work is for people of faith - and those who are questioning faith - everywhere.