"The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait on the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint." Isaiah 40:28-31
MEMORIES UNFOLD LIKE TREASURES
About a month ago, a family friend asked me to share some insights from my experiences working with individuals who had memory loss. He was entering into a mentoring relationship with a man in the early stages of Alzheimer's and wanted to have a better understanding of what to expect. Our conversation opened up a flood of memories. Twenty-one years ago, I walked into the doors of the local nursing home and asked for a job as a Certified Nursing Assistant. Eventually, I went to college for my Bachelors of Science in Social Work, and it made sense to continue working with the elderly. For almost two decades, I spent my working hours alongside the needs of vulnerable seniors, sharing in their daily struggles and delighting in their joyful moments. I saw a tremendous amount of joy, sorrow, hope, loss, wisdom, humility, and love. My work brought a sense of fulfillment in making a difference as well as the heartache in observing the overwhelming losses that these courageous individuals and their families had to endure.
I worked at a handful of facilities over the years; however, some of my most treasured memories were at a memory care unit in the city. When I took a position as their social worker, I knew I would face immense challenges on the large secured unit that provided care for individuals in all stages of memory loss, some expressing themselves through severe aggression and disruptive behavioral patterns. Determined to do my best, I immersed myself in education about Alzheimer's disease, memory loss, and the best strategies in caring for this vulnerable and at-risk population. In doing so, I unearthed an incredible treasure by discovering the key to finding the authentic person behind the disease as I unveiled the unique life experiences that shaped each individual personality and behavioral pattern. It wasn't an easy job, and I had my share of struggles in the process; however, the reward was definitely worth it. I was blessed with numerous memories of individuals who touched my life in a myriad of ways. I couldn't even begin to share them all; however, I picked a few of my favorite stories of incredible encounters with extraordinary individuals.
COMMON GROUND: SANDRA'S STORY
"Bless the Lord, O my soul, and forget not all his benefits, who forgives all your iniquity, who heals all your diseases, who redeems your life from the pit, who crowns you with steadfast love and mercy, who satisfies you with good so that your youth is renewed like eagles." Psalm 103:2-5
Sandra was a sullen woman with a dual diagnosis of an unspecified form of dementia and a significant history of mental illness. Upon completing Sandra's social history, I learned that she was somewhat of a celebrity in her day. Sandra's career began as a soap opera actress for the radio, and she ran in circles with Hollywood's elite. Sandra also won a handful of beauty pageants. She was once devastatingly beautiful, and her husband, Ronald, adored her. To Ronald, she was still his gorgeous bride whom he fell in love with so many years ago. To the memory care staff, Sandra was a bitter woman, her days of fame seemingly long forgotten. Once in a while, the diva in her would spill out in her fiery personality, but most of the time she seemed just plain angry and hateful. The exasperated caregivers showed me bruises and scratch marks on their arms, describing the hateful words she spat at them. I made several futile attempts to get to know Sandra better; however, she made it clear that she despised me. She would glare at me and sometimes stuck out her tongue when I smiled at her. Then, in a miraculous moment everything changed.
At that time, I was working at a Christian facility that encouraged the staff to minister to the spiritual needs of the residents. One afternoon, upon returning from a staff prayer group, I felt incredible warmth in my spirit. As I stepped onto the memory care unit, I discovered Sandra just outside of her room, sobbing. I gently touched her shoulder and asked her, "Sandra, what's wrong?" Then, the moment truth came out when she expressed how lonely and inadequate she felt. I patiently listened to her and took a risk by asking her, "Sandra, do you know how much God loves you?" I told Sandra about God's immeasurable love and prayed with her. Sandra replied with tears spilling over, "That's the nicest thing anyone has ever said to me." That day, Sandra and I somehow found a common ground in her anguish and the warmth of God's Spirit in my heart. That was the start of a new relationship between us. Every week, I set aside time to visit with Sandra, read Bible verses, and pray with her. I was rewarded with the joy of her smiles and the light in her eyes during those precious moments. Although Sandra continued to be aggressive with staff, and she had periodic angry outbursts, I saw a change in her. I was privileged to get to know the real Sandra who let down her guard and revealed the sad and frightened spirit behind her bitterness and anger.
Whenever Sandra's husband, Ronald, visited the memory care unit, Sandra's eyes lit up and her face radiated with love. When they were apart, she grieved his absence, frequently telling me in tears how much she missed him. It was obvious how much they loved each other. About a month before Sandra entered into eternity, the activity staff invited several spouses to share in a romantic Valentine's dinner at the facility. They sent out special invitations and decorated the lower level for the event. Each couple had their own private table with a candlelight dinner. On the day of the event, we helped recreate Sandra's youth. The activity staff gave the beautician a picture of Sandra as a young actress and asked the beautician to fix her hair with the same style. We assisted her in dressing up in her finest clothes and painted her nails red. I helped her with her makeup, and she picked out some elegant costume jewelry to set off her look. That evening, we took a photograph of the happy couple. The joy and happiness they both experienced warmed my heart. I felt honored to have a small part in this memorable moment for two very special people.
THE LIGHT: GEORGE'S STORY
"I will turn the darkness before them into light, the rough places into level ground. These are the things I do, and I will not forsake them." Psalm 42:16
Every day, George sat outside my office with a weary smile, his sad gray eyes gazing at me. George was a kind and gentle man. His personality was unassuming, and he did not say much. Not long after George's arrival, the facility decided to separate the large unit into two smaller memory care units. On the day we shut the doors to separate the units, George anxiously looked around him like a caged bird seeking a way out. Later that day, George cried out, "I'm sorry honey, I have to do this!" He then shot out of his wheelchair and ran into the elevator just before the door closed. Determined to get away, George made his way out the front door and headed towards the parking lot. Fortunately, another staff member and I were able to safely assist George back into the facility. He later told me that when he saw the doors shut, he felt like he was locked up in a prison. George had to get out of there, and he was heading home. George's wife, Lillian, couldn't care for him anymore and the memory care unit was his only option at the time.
George was in the moderate stages of Alzheimer's and physically compromised as well. I asked Lillian to bring in some familiar items from home that could assist George in feeling more comfortable. She brought in a picture of George from chef school. He and his fellow students proudly wore their chef hats with mischievous grins. George enjoyed sharing stories about his work as a chef. I started spending extra time with George to help him adjust to his surroundings, offering him opportunities to step out of the memory care unit for some additional freedom. We sometimes attended cooking classes together and sampled the food. Although the cooking classes were enjoyable, our favorite times together were our weekly "dates" outside the facility. Before we headed out, I would stop by the break room for a Little Debbie snack and a can of root beer for us to split. We sat outside at the facility park, sipping our cups of root beer and eating our dessert cakes in comforting silence. It was summertime. The air was fresh, and the park was beautiful. A small waterfall bubbled softly and sunlight poured over us like a beam of light to wash away the darkened shadows. Those moments were serene, and George's gray eyes glowed with relaxed pleasure. There was something about simply engaging in normal everyday activities that brought contentment to his spirit.
George wasn't with us long. One morning, I stopped by his room for a visit and found him in bed, his eyes glazed over and distant. His breathing was shallow as though it took a tremendous amount of effort for each breath. My heart felt heavy as I realized that the end was near. I sat with him, gently holding his hand and praying. I experienced a sense of peace knowing he would soon experience the glorious freedom of eternity. Someday, we would meet again on the streets of gold, and George would be young and free, full of life like the confident young chef in his picture.
THE ESSENCE OF THE SOUL: MARCUS'S STORY
"Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing us for an eternal weigh of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal." 2 Corinthians 4:16-18
Marcus was in the late stages of Alzheimer's. From the day I began working at the memory care unit, his timid presence was nearby as he silently took in his surroundings. Every day, Marcus's devoted wife, Virginia came and sat with him. She loved him dearly, and he was her life. Virginia clung to the hope that Marcus would get better so that he could return home where he belonged. The nursing staff shook their heads sadly as they overheard her telling her husband, "Now Marcus, you have to get better and start walking so you can come back home!" As his Alzheimer's progressed, Marcus eventually lost the ability to verbalize, smile, lift up his head, and swallow. When Marcus was in his final days of his life, Virginia stayed by his side begging him to live and pleading with nurses. Although the prognosis gave him hours, a day or two at the most, Marcus hung on for more than a week. Finally, Marcus's geriatric nurse practitioner sat down with Virginia and had a very compassionate but frank conversation with her about her husband's condition. The nurse practitioner explained to Virginia that Marcus was holding on to the thin thread of his life for her sake. When Virginia was finally ready to say goodbye to her beloved husband, he passed away a few minutes later.
Marcus may not have been able to verbalize or place exactly who his wife was; however, he truly loved her and recognized her as someone very significant to him. We can lose our physical health, our memories, and our ability to speak; yet, we don't lose the essence of who we are. The soul beautifully woven by our Creator remains intact, held in the deep recesses of the heart. The soul sees, the soul knows, and the soul remembers.
UNDERSTANDING MEMORY LOSS
"Can a woman forget her nursing child, that she should have no compassion on the son of her womb? Even these may forget, yet I will not forget you. Behold, I have engraved you on the palms of my hands." Isaiah 49:15-16a
The term dementia is most often used when referring to memory loss. Dementia is not a disease but an umbrella term describing a group of symptoms caused by a variety of diseases or conditions such as Parkinson's disease, Lewy Body dementia, Vascular dementia, Picks disease, and Alzheimer's disease. Alzheimer's is the most common form of dementia. It is a progressive disease believed to be caused by plaques and tangles that attack and destroy brain cells. Individuals with Alzheimer's disease first lose their short-term memory. They may have trouble coming up with the words for the names of everyday objects. As they begin to realize something isn't right, they can have the tendency to withdraw and isolate themselves. Family members may notice sudden personality changes or mood swings. Individuals in the early stages of Alzheimer's and other dementia-related conditions often are able to hide or compensate for their memory loss; however, as the disease progresses it becomes increasingly difficult to do so. They often revert back to earlier stages in their lives and may not recognize family members or loved ones. Faces are familiar to them, yet they are unable to place who their loved ones are. The individual with Alzheimer's sometimes will remember his/her spouse as the person he/she first married and talk about their young children/babies. At some point, they may forget that they were ever married or had children. When they relive their younger years, both delightful and terrifying memories can resurface. As family members and caregivers, it is critical we anticipate what the person with memory loss might be experiencing so that we are better equipped to help them navigate through each day with compassion and patience. When we let go of our expectations, we are able to momentarily reach the heart and soul of the person. In seeking the essence of who they are and the source of their daily struggles, we are able to more successfully bring joy into the person's day, moment by moment.
WHERE THE HEART IS
The term, "home is where the heart is" is central to the spirit as memories fade and surroundings become unfamiliar. When the individual with Alzheimer's asks to go home, they aren't necessarily looking for an actual place but a feeling of safety and security. When I trained staff and families on caring for individuals with Alzheimer's disease, I would remind them that our job was to bring "home" to the person. "Home" may be a steaming cup of coffee with a sweet pastry, a stroll in the garden, the softness of a favorite blanket, a song that brings back cherished memories, or quietly sitting and holding hands. One woman may find "home" in baking a homemade apple pie, while another may find "home" in cuddling with a baby or petting a dog. Although we are unable to change the circumstances and reverse the progression of the disease, we can make the daily choice to live for each moment understanding that each behavioral symptom the individual expresses is a way of communicating an unmet need. We create a feeling of "home" when we patiently meet them where they are in each moment. The daily struggles with the disease can be daunting and overwhelming, yet we are left with those moments, and they are what count.
Family was the center of my Grandma June's life. She loved spending time with her grandchildren and other family members. Although my grandma did not experience memory loss, she spent her final days at a long-term care facility in rural Kansas. My last memory of Grandma June was her sitting with me, holding my hand, and telling me several times, "I love you."
RESOURCES
The information in this article was based on my own personal experiences as a caregiver for countless individuals with Alzheimer's and other dementia-related conditions as well as the information I taught in training seminars for staff and families. I was also a periodic guest speaker for the Alzheimer's Association. The stories I have shared took place several years ago; however, I changed the names in order to protect the privacy of each individual.
For more information about Alzheimer's and dementia as well as caring for individuals, you can check out Jolene Brackey's website. I highly recommend her book, Creating Moments of Joy.
http://enhancedmoments.com/
You can also visit the Alzheimer's Association's website to learn more about the disease and find out what resources/help are available to you and your loved one.
http://www.alz.org/
For more stories about working with memory care, you can read my blog:
http://dzehm2.blogspot.com/2017/04/the-memory-seeker.html
