One of the greatest gifts to share with someone who is living with Alzheimer’s /dementia is to connect with their reality, to live in their world rather than attempt to draw them to the here and now as we experience it. Their world may be decades behind ours. They have returned to a time in their lives when they were most active, productive, and independent. They have jobs to go to, families to raise, hobbies to pursue, and religious practices to observe. They are young, vital, and healthy. The people closest to them are alive and others are dependent upon them. This is how they perceive their lives, rather as a frail elder who needs help with feeding, dressing, toileting, who can no longer be independent, and has most likely lost many of the people closest to them. They physically and cognitively cannot connect to time and the world as we know it. Nor do they need to.
Comfort and spirituality at this stage in their life often requires what may appear to be deception, yet what is being offered is an acknowledgment of their spiritual truth and reality.
“Your mother isn’t expecting you home until after dinner.”
“Your husband is at work.”
“Yes, that’s right. Your son is at baseball practice.”
“What a beautiful baby daughter! You both must be so proud and excited!”
“This is a perfect day to sing ‘O Come All Ye Faithful.’”
These are gentle affirmations of their world and reality as nothing is gained by attempting to orient them to our world and time when they are no longer able to process that reality. Nothing is gained by reminding them that they are elderly, their parents died decades ago, that they have lost their spouse after sixty or seventy years of marriage, that the little child they are thinking of has become an adult they cannot remember, that the baby they cuddle is a doll rather than their long-ago infant, and that it is far from Christmas. While those are literal truths, they cannot be processed, grieved, or attended to in the world of dementia. Being pulled back to reality as we know it can force those with dementia to relive anew some of the harshest experiences of their lives each time a ‘correction’ is offered.
It is a gift of spiritual love to meet them where they are, not where we are. It is an affirmation of their spiritual quality of life. The important reality for those living with memory loss is the reality where they perceive themselves to be.
While we are familiar with the idea that perception is reality, it has been said that perception is merely reality filtered through the prism of your soul. These words speak to the comfort of spirituality and acceptance of their worldview for those living in the world of dementia. It is from our souls, our center, our spirit, that the truth for each of us is found. The lens through which anyone at any time views the world is a kaleidoscope of memories, emotions, faith beliefs, culture, gender, generation, geography, education, interests, and mood. In dementia, the reality perceived is further shaped by the disease process. This new reality set back in time is actually a gift as emotionally and spiritually, youth, vitality, and family are restored to those who are gradually losing everything.
As infants we feel and express emotions very early on, showing joy, calm, fear, sadness, and anger within the first few months of life. Our emotions, our reactions to the world and the people around us, are our first lessons in interior responses to our circumstances. These first lessons are not lost to the ravages of dementia. Our emotions, whether we feel safe or scared, calm or angry, are not lost in the haze of dementia. Emotions remain a language, a means of communication, even for those who are in the final stages of the disease. Body language and behaviors speak when words cannot, and they speak accurately.
As loved ones, as caregivers, our acknowledgment and attention to the language of emotions is comforting, supportive, and healing. Anticipating and recognizing emotional triggers, what aggravates and what soothes, is an ongoing, non-verbal conversation for those living with dementia and for their caregivers.
Emotional triggers are entryways into the reality of the person with dementia, which is why it is critically important for caregivers to know as much as possible about a person’s interests, beliefs, religious practices, concerns, accomplishments, fears, and losses. Gathering this information and history as early as possible allows for the person in the earlier stages of dementia to contribute to their own story, to recall with nuances the details that may be overlooked or unknown by others.
A great gift for family to provide for caregivers and for their own reference is a written, accessible biography of their loved one. It is this information that can offer positive ways for loved ones and caregivers to engage, comfort, console, and interact with a particular individual, to meet them where they are.
The psalmist praised God that we are fearfully and wonderfully made (Psalm 139:14) and that God had written in the book of life all the days of each life even before any of them existed (Psalm 139:16). This long view of our lives keeps us mindful that at any given time we are always a moment of who we are in our totality. The same single life flows, evolves, changes, and grows, but is always connected and cohesive no matter the journey. Who we are and Whose we are never changes. Our experiences, events, interests, joys, successes, traumas, accomplishments, losses, and quirks remain an indelible part of us. We tend to remain who we have always been, and in the receding process of dementia, these earlier parts of life become current reality once again.
Dr. Candace Pert was an internationally recognized neuroscientist and pharmacologist and major contributor to the emergence of “mind-body” medicine. She called bodies “your subconscious mind.” Our bodies can be changed by our emotions. People with dementia develop an increased sensitivity to episodic emotional experiences, so whether positive or negative, the emotions are held in the body long beyond the experience or memory of it. Knowing a person’s life through stories, photos, and keepsakes is providing respect, dignity, acceptance, and lovingkindness to the one who can no longer tell their own story.
Body memory is the hypothesis that memories are stored in our bodies based upon emotional significance. These memories may have been repressed because of the original event itself or the event occurred prior to our ability to form memories, yet the emotional episodic memory clings and is stored down to our cellular level. Freud taught that these are the torments that lead to phobias, guilt, and shame. Unlike memories in the mind, body memories are not forgotten in the process of dementia. Age-old traumas can be reopened without attentiveness to the triggers, and the responses are instinctual behaviors meant to be self-protective. Tender, calming reactions that maintain privacy, dignity, and respect are appropriate and compassionate responses that the emotional well-being at every stage of life and in every health situation.
Awareness of and attention to what is happening in a person’s reality at this time offers cues and clues on how to respond individually and appropriately rather than offering a general distraction or even medication, which does not honor the person with dementia and may not be the appropriate solution to the situation.
While having the biographical information, stories, names, interests, accomplishments, and places provides and enhances the interaction within a person’s reality, it is also essential to know the losses and places of deep pain as those too can be revisited or triggered, in their reality. Many memory care neighborhoods offer dolls as a soothing comfort for the mother to rock and hold, but for someone who lost an infant, the motionless doll brings back the fresh horror and the raw grief of their lifeless child. Military uniforms, medals, and photos celebrate the veterans who served and defended the country, but there needs to also be a sensitivity for those who lost loved ones during a war and will have that loss repeated each time these items are within sight. Stuffed animals are a soft, soothing comfort for some people and remind them of beloved pets, yet for someone who was bitten by a dog or lost their pet at a very young age, these can become a negative trigger.
Dementia takes away a person's ability to think philosophically, theologically, or in the abstract, to interpret Scripture, to comprehend the meanings of or carry out many religious practices and rituals. Faith-based actions, bible study, communion, or praying with icons or beads may no longer make sense intellectually. Very important, however, is that the lack of cognition does not take away the emotional comfort and spirituality received from participating in the rituals, sacraments, familiar prayers, and hymns that were learned at a very young age. The meaning may be lost; the comfort, the peace, the tradition, will remain. Maria Shriver was aware of this comfort for her father Sargent Shriver, while also acknowledging the cognitive losses from Alzheimer's disease “At ninety-three, my dad still goes to Mass every day. And believe it or not, he still remembers the Hail Mary. But he doesn’t remember me.”
Spirituality and emotions are the solid ground path to remain connected to loved ones who live in the ever-changing world of dementia.
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