*Resident names and any identifying details have been changed for privacy.
September 18, 2020
The glass vase smashed against the wall, shattering to bits.
"Get out!" Her scream, nearly primal, echoed down the hall.
She struggled to remain standing as her knees wobbled and threatened to collapse.
It was one of the ugliest deaths I have ever seen. It went on for days, weeks maybe. So very long.
It wasn't that extreme the entire time, of course. They kept her calmer with medications. At a certain point she physically couldn't stand, couldn't get out of bed. But the battle raging within played out on her face, and in the way she thrashed and writhed about despite everything we tried.
"We die the way we live," explained the hospice nurse as we struggled to help this poor woman find comfort. Struggled to comfort each other in the wake of her torment. In our helpless lack of ability to do anything else.
They say you will die in three days without water. I know for a fact this isn't always true. When you have demons to wrestle you can't die. At least not without a bloody fight.
Inga was a fiercely independent woman who lived in our memory care community. She shared bits and pieces of her story with me over the years I knew her, as she gradually descended deeper into dementia.
From the age of 15 she'd been on her own. Her father had not been kind. Her husband, the one shining light in 86 years of darkness, had died a decade earlier. She had no other family ties.
As a young housewife, Inga began drinking heavily. One day she felt a sharp pain in her brain, and vowed from that moment forward to never drink another drop. She poured all her vodka down the drain and never did.
However, she lived in self-directed fury for the rest of her life. She never forgave herself for her alcoholism, nor apparently for any mistake she ever made.
Disgusted, almost hateful, toward herself anytime she forgot her late husband's passing, she would seethe over what a “terrible wife" she was.
Nothing anyone did was good enough for Inga, because nothing she did was good enough for herself.
Beyond proud of her independence, she was unwavering in it – counter dependent. Inga never needed nothin' from nobody. She didn't need help, didn't deserve it, and she certainly wasn't going to accept it.
Inga did everything right – or at least she tried her hardest to do so.
She was a church-going Christian for years. She stopped going to church at some point, when she could no longer get there on her own, but she still considered herself a Christian.
She attended the weekly Hymns and Devotions service in the center. Sang all the songs like she was supposed to.
She wouldn't accept any support, and didn't outwardly appear to need it most of the time.
Looking back it's clear she did.
I'm sorry Inga. I wish I could have seen it better then.
I wonder what I could have done differently, had I recognized her need in the moment. Could I have said or done something to help her to heal some of the pain she had lived with for so long?
Could I have asked the right question at the right moment? Planted a seed to catalyze her spiritual healing and reduce her suffering?
Maybe she could have died peacefully, secure in the belief that she was going to meet her husband in Heaven again.
I doubt she thought she was bound for Heaven.
Spirituality can be tricky in dementia care, especially in a facility setting.
Often our residents' spiritual lives are reduced to a few checkboxes on an intake form indicating religion or a few other preferences.
It generally fails to recognize the complex, robust world of spirituality. It particularly ignores the rich potential – even need – for spiritual growth during the last few years of life.
A few individuals have spoken out with their uncustomary point of view that cancer can be a blessing.
Of course, cancer is many things to many people. Certainly a devastation, a tragedy or curse, it can also be an opportunity or a second chance. By no means does this minimize its pain and suffering. However, in the complex mix of emotions and perspectives, for some there can exist a blessing.
The opportunity to get one's life in order before death can be a blessing that may be overlooked until compared to those who die suddenly, without that chance.
Dementia can sometimes be a blessing as well, for some of the same reasons.
Again, not to disregard the unthinkable pain and hardship that people with dementia and their loved ones experience, but even in tragedy there is something worthy of gratitude.
One potential blessing that some people with dementia can count is to use their last few years to find spiritual healing, peace and wholeness.
As a wise woman once told me, in her dementia she was finally able to "just be, without pretense".
There is a good deal of research describing the importance of supporting spiritual wellness in people with physical and mental health concerns.
Although spiritual wellness is recognized as one of the six dimensions of wellness, and an integral part of holistic wellness, many of us have little concept of spiritual health and wellness.
After years of memory care intake interviews, I found that many residents and their families don’t even recognize their own need for spirituality.
"Oh, no, I'm not religious. We can skip this part."
Or with a little digging we would come up with a little more info: "Well, he was raised Catholic, but he hasn't been to church in fifty years".
Religion can be one way to meet spiritual needs in some cases, but each can exist with or without the other.
Religion is a set of specific practices, beliefs and rituals. They are usually somewhat structured or organized and are typically shared by a group or community.
Spirituality is an individual’s sense of peace and purpose. It can look many different ways. Spirituality has to do with the big questions in life:
What is the meaning of life?
What is really important to me?
What is my purpose in life?
How do I fit into the universe?
Is there a higher power?
How do I make sense of, or find peace in, tragedy?
How can I forgive the unforgivable?
What happens after we die?
What is right or wrong? Do I live by my values even when no one is looking?
We need time to reflect on these types of things. For many, religion helps answer these questions, while for others it does not.
To find peace before death, people tend to go through a process of life review, or reconciliation.
Like the process of grief, there is no set pattern or "right" way to review one’s life. The process varies tremendously from person to person.
For some, the process may be very quick, while for others it may take years or decades. Some may spend a lot of time struggling with one element, even revisiting it repeatedly, but breeze through another.
Typically, life review includes the following elements:
Appropriate expression of one's difficult emotions, such as anger and shame, allows for them to be released and cleared away.
Realizing one's responsibility – owning the actions in one’s life – enables a person to stop hiding from truth behind blame or excuses.
Forgiveness of oneself and others releases bonds of hurt, bitterness and resentment. Sometimes this energy has been held for decades, or even for an entire lifetime.
Once the emotional blocks have been cleared away, people often experience an overwhelming sense of gratitude for all that has touched their life, including the people, the experiences – good and bad – and perhaps the higher power.
When a person is able to accept their life and impending death they reach a state of profound peace.
Some people are lucky – or wise – enough to keep up with these things in real time throughout their lifetime.
We don't have to wait until the end of life to unpack and examine our baggage.
We can choose peace all along.
But, those of us who don't tend to end up trying to scramble for it at the last moment.
As much as we can do for ourselves, or help our people with dementia do, ahead of time will be well worth the effort.
When evaluating someone's spiritual needs or background, and you hear that they haven't been to church in a long time, it's worth asking: Why not?
Was there a tragic event that felt like a betrayal from God?
Has he just simply been too busy with his career, family or other obligations?
Did he find that the church ultimately didn't fill his spiritual needs, but something else did?
Old age may be an important opportunity to perform life reconciliation – especially for those who may have unexpressed emotions, unforgiven memories or difficulties with responsibility.
At the time of an initial spiritual evaluation, someone may be very angry at God. However, as they work through the wreckage and come closer to peace, they may find themselves responding differently to things. Prayers, hymns or topics which once triggered an negative emotional reaction, may ultimately again touch them deeply.
As they regress backwards in time with the progression of dementia, their needs and desires may change as well. They may revert back to beliefs or customs from their earlier years.
Respect where they are in the moment, always allowing room for growth, evolving needs and changing perspectives. Even if they have dementia.
While a weekly church service can be an important ritual or cornerstone to spiritual practice it may not be enough in a time of exceptional challenge. What could be more challenging, and demand more spiritual support or growth, than facing the future with a diagnosis of dementia?
* Separation from family, or fear of it *
* Feeling like a burden *
* Financial uncertainty *
To have to sort through these issues while dealing with the massive emotional turmoil and exhaustion of dementia... These people are in an extremely challenging time, spiritually speaking.
Be aware that as people enter the final stages of their lives, whether the last decade or the last day, they may be working to reconcile their lives and find peace.
What can we do to support them with this process? Can we provide access to the sights, sounds and smells that help them feel comfort in their soul?
Pictures, symbols, written quotes or meaningful passages can be reminders of faith, or peace.
Music has a special way of speaking to the soul, and familiar religious hymns can be especially powerful.
Other sounds might include zen-like meditative nature sounds, chants or recordings of familiar spiritual leaders speaking. Reading from meaningful texts can also invoke a peaceful perspective.
Sharing prayer can also be a quick and easy yet powerful experience.
Aromas have a powerful ability to unlock memories and emotions in all of us, even in the presence of dementia.
How can we use smells to unlock memories, and feelings of comfort, reassurance and spiritual peace in an individual?
Was the person raised in a tradition where incense, perfumes or other smells may have been used in prayer, religious ceremonies or spiritual practice?
Did the person find peace and comfort in nature? How can we bring them to these places, or bring sounds and smells of nature to them?
We once had a resident who was an avid outdoorsman and horse lover. When he was bed bound on hospice one staff member filled his room with rich smelling fresh cut pine branches and even a saddle with horse blankets. His room filled with familiar, deeply comforting smells and sights, he passed peacefully.
With dementia, people have limited ability, if any, to choose when, where or how they process spiritual challenges. We have to respond in the moments they are ready. This means that it can be harder to derive support from a chaplain, religious leader or other traditional outlet.
Caregivers, and those who spend day to day life with the person, often become by default the best support for many.
One of the most important aspects of spiritual support in dementia is to spend time simply being with the person. Building a relationship of trust and respect is the most important foundation. Most of the time will likely not be spent talking directly about “spiritual” matters.
When the emotional and spiritual challenges flare up, we can understand. We can listen without judgment as they express and process their emotions.
We can refrain from discouraging negative emotions. We can acknowledge their pain. We can feel sad with them. We can help them give a name to what they're feeling. We can support them as they grieve old wounds.
People have the right, and often the need, to grow and heal spiritually. Old age is practically custom-made to accomplish this.
Spiritual growth is up to the individual. We can't make anyone else heal or grow spiritually. But we can recognize and support our residents with dementia to do so as they are ready.
We can support them to express what are often recognized as the five things to say before we die:
Please forgive me
I forgive you
I love you
If I had the chance to do it over, I might look for opportunities to ask her about what she felt, believed, learned or even regretted. It may or may not have made a difference to her spiritual growth - that would be up to her. If she didn’t want to talk about it, of course, I wouldn’t push it.
I do know that, because she did share some of her story with me and the other staff, Inga suffered a little less than she otherwise would have.
And, who knows? She may have ultimately found peace in the moments before death, like this man who found peace right before he drew his last breath.
Self-examination, facing our inner fears – our demons – is one of the most challenging, rewarding and important tasks in all of life.
“Confront the dark parts of yourself, and work to banish them with illumination and forgiveness. Your willingness to wrestle with your demons will cause your angels to sing.”
~ Playwright August Wilson
“Don't fight your demons. Your demons are here to teach you lessons. Sit down with your demons and have a drink and a chat and learn their names and talk about the burns on their fingers and scratches on their ankles. Some of them are very nice.”
~ Writer and poet Charles Bukowski
The Spiritual Implications of Dementia by Lynn Casteel Harper, Ordained Baptist minister and retirement community chaplain
Alzheimer’s and Dementia: A Spiritual Perspective, by Leslie Hyland Rodgers at the Symphony of Soul blog, who provides “Musical Medicine for the Soul”.
What amazing spiritual growth have you seen in people with dementia?
Share your story on the ABC Dementia Facebook Page.
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