An Alzheimer’s disease or dementia diagnosis is life-altering and raises many fears for the individual receiving this news as well as for those who love them.
Megan Carnarius, RN, NHA, LMT, published author and owner of Memory Care Consulting, offers a different perspective. She provides a glimmer of hope; a paradigm shift for those touched by the disease. Learn more from our interview with her.
An Alzheimer’s and dementia diagnosis of any type is a shock, and the sense of loss and grief it causes is real and needs to be supported and expressed. There are emotions and unresolved issues, as well as pearls of wisdom that need to be explored within the challenges of this illness. In some instances, this disease process provides an opportunity to express or heal core issues.
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There is a lot of life to be lived between the diagnosis and the final stages. Megan helps people focus on these positive possibilities in her new book, “A Deeper Perspective on Alzheimer’s and Other Dementias: Practical Tools with Spiritual Insights.” She comments:
“I would not have considered authoring a book, but I kept getting feedback from families and professionals while giving talks. They would say, ‘You need to write a book. This perspective is different from anything we have heard.’
My experience told me that people were experiencing many things but we tended to focus on the negative, or losses, rather than on some of the experiences that were actually very positive. I wanted to give those situations a voice.
There are so many dynamics to this illness. One way to see the positive is by focusing on the strengths that remain. It helps us stay present for the moments of joy and humor that are still there. Caregivers can consider what they are learning through this experience and recognize they are evolving in their skills and abilities. Alzheimer’s peels off layers of what we developed through our lives, but in this decline there are aspects of us that become more vulnerable and exposed and at times the essence of the person may become more visible, actually in beautiful and stunning ways.”
The jacket of Megan’s book says it all: “Soul-searing, life-testing situations have what some call ‘fall-out blessings.'” The book is about understanding some of the deeper lessons we are exposed to through caring for individuals with Alzheimer’s and other types of dementia. Megan has witnessed these blessings first-hand, and hopes to share the positives that can come out of the heart-wrenching diagnosis.
As dementia progresses it causes changes in the person’s sense of themselves, in their personality and in their ego construction as they have known it. To the observer, this process shifts the person more into their emotions. Because the old way of operating is no longer available to the person, he or she may act or behave differently. Sometimes, this is a good thing and can be considered a “fall out blessing.” Elders who were introverted start exploring being extroverted, trying new things or joining in when previously they would have shied away from such activities. Elders who were extroverted may become more contemplative and enjoy quiet time on their own. An example of this type of shift is provided in the following story. Ms. Carnarius relays:
“There was a father who was quite controlling, cruel and abusive to his kids and wife; which had caused an estrangement between he and his children. He had dementia — and when his wife sadly passed while taking care of him — he had to be transferred to a memory care facility. This also required one of his children to step in as the responsible party. As the disease progressed it caused the father to become incredibly loving and sweet. Although he was mostly nonverbal at this point, he was happy to see his son, and radiated with an incredible smile and sparkle in his eyes during all their visits. This was so stunning to the son that he even invited his own children to visit with their grandfather. He could never get his siblings to believe him about the change in their father, and they never visited. When the father was dying, this son and his children were all around the bed singing. The son commented:
‘These last two years have completely changed my view of my whole life with my father. I have forgiven him, I have been able to love him without reservation, and he has shown me and my kids great love and appreciation. The transformation and healing that came out of the disease was amazing.'”
When Megan started caring for elders with dementia in the early 1980s there were no specially designed facilities or staff training. She became a strong advocate for more humanized care and has thankfully seen many changes in the way we treat and care for elders with memory loss, at all stages of this disease. There is more awareness about this group of diseases, more research dollars to fund treatments and find a cure. We see better training for caregivers, and many more options to provide better care. Resources are available for facilitating someone’s ability to stay at home longer with better educated home-care providers or utilizing adult day care programs. There are better designed memory care programs in assisted living or skilled setting when someone needs residential care.
There are still more improvements to learn and do, such as dealing with the costs of care in better ways and addressing the change in the numbers of elders in our country over age 65; therefore the demographic of who has the disease and who is caring for them. The picture is so much brighter though than it was 25 years ago. There are so many more therapies for individuals with cognitive loss. This includes the use of art, journaling, music and and reminiscence therapy with biographical movement, poetry and theater work, and even spending time with therapy animals. There are programs which focus on intergenerational experiences such as playing croquet or doing craft or community service projects, singing, storytelling and reading to each other. Horticulture therapy also attracts many master gardeners to memory care buildings when earning their service hours. Many of them never leave, accompanying elders through the seasons either in the garden, gardening together or doing projects related to plants. These are all positive therapies for individuals with cognitive loss.
In the early 1980s, practitioners were told always to try to orient a person who was confused. In early stages of dementia with short term memory loss this is often a welcomed support approach. “What time are we going to the doctor?” and you simply reply with the information. They may ask again in a couple minutes, and you stay calm and repeat your answer. In later stages the elder may not welcome logic, or reasoning or understand that you are trying to “correct” their notion or belief and may actually become more upset. Correcting no longer is a useful approach.
The person with memory loss should have their emotions, experiences and perceptions validated, even though they may be disoriented or suffering from delusions. This offers practical ways to reduce their stress and promotes their dignity and happiness. Here is a poignant example from early in Megan’s career that woke her up to the needs of elders with dementia:
“One of my particularly vibrant patients, an Italian American from South Philadelphia, used to call out to me, using the name, ‘Maria! Maria Carvaggio!’ — to get my attention. The first time she did this, I walked up to her in my normal voice with my normal accent and responded politely, ‘How can I help you?’ She responded by slapping me across the face. Needless to say, this was not the response I expected, and it completely startled me. Retreating, I regrouped and the next time she called me, I replied with the best Italian accent I could muster and responded, ‘Whadda ya want?’ She reached for my hand and said, ‘I lova you!’
What she was really saying when she slapped me was ‘Wake up! You want to relate to me? You want to connect? You need to be recognizable in my world! You need to adjust to me!’ It was a very valuable lesson.”
Megan points out that education about Alzheimer’s and dementia is so important in order to remain objective. She does an exceptional job explaining the stages, to help caregivers understand what they are experiencing as well as understanding what to prepare for.
The concept of “retro-genesis” suggests that what we developed going forward in our lives, we revisit in reverse and let go of it in the process of dementia. In other words, the last things we learned in life are the first things we lose with dementia. In these chapters Megan also places attention on how the person with the diagnosis feels, how the caregiver feels, ways communication and behaviors change, what activities can still be done together, as well as tips for resilience.
Each of these dementia stages has its own chapter in the book:
The book also provides many words of wisdom for caregivers and families afflicted by Alzheimer’s and dementia. Here are a few that resonated:
There are many folks with disabilities who are pushing the envelope of what “normal” is for all of us, and don’t want to be defined by the tragedy of whatever caused the disability. If we can find ways to support an elder with dementia through their process with compassion, insight and a lighter heart, in the best ways available to us, we will see them move through this process with less fear, and hopefully more self-expression.
Megan Carnarius, RN, NHA, LMT, is a published author and the owner of Memory Care Consulting, LLC. Megan has over 22 years in direct management of memory care settings in skilled and assisted living, with 33 years in geriatric nursing. She is a registered nurse (RN), a licensed nursing home administrator (NHA) and licensed massage therapist (LMT). Megan served on the Alzheimer’s Association education committee, designed award-winning memory care facilities, and served as an adjunct faculty member at Naropa University. In 2015, she published “A Deeper Perspective on Alzheimer’s and Other Dementias: Practical Tools with Spiritual Insights” (Findhorn Press). Megan recently launched her consulting practice. She provides building design & program consulting, care management and caregiving consulting to families and facilities, and lectures and training. Megan can be reached at: firstname.lastname@example.org and www.memorycareconsulting.com.
Has Alzheimer’s or dementia affected you or your loved one’s life? How did you cope? Share your story with us in the comments below.