A deeper look into topics surrounding caregiving and the world around us.
By Ruth Dennis
Senior Director of Social Services and Education
The Hero in Dementia
In the face of life threatening illness there are many, many ways to be a hero. The partner who stands by their mate and supports both freedom and comfort, even when they struggle with or do not want to see the changes their partner is going through, is a hero. The ex-wife who takes her dementia-suffering former husband into her home when everyone else has turned their backs on him is a hero. The husband who cares lovingly for his wife at home is a hero. So is the husband who finds the home where his wife can be a social butterfly. Yes, there is fear, sadness, and frustration. But they keep going.
Cognitive Function Behind Social Connections
In our second sequence of “Key Takeaways from “Our Epidemic of Loneliness and Isolation 2023 Report” the Cognitive Function Social Connections is highlighted and dive into perspective….
Knowledge is power. Pablo Picasso once said he learned to draw so he could let go of everything he learned. Learning about dementia is like that—know what you are facing, and then find a way to let go and get beyond the disease. Music, handholding, laughter, and rest are good places to start. #FoodForThought
Why Social Connection Matters
According to the U.S. Surgeon General’s Advisory "Our Epidemic of Loneliness and Isolation 2023" report, social connection impacts people with dementia and the progress of the symptoms. Here is why….
Holiday Peace, Caregiving, Chaos, and Other Paths…
It is odd to write about holidays and caregiving for me at this point. In my working life I support those who are caring for others, in my life I have a cat, too many plants, a writing desk and a studio. I, like most people, have vivid memories of holidays. Some of my memories are beautiful, others are funny, and many are deeply painful. Holidays in my family were loving but often bittersweet. We created our own traditions because we lived a couple of states away from my mother’s family and my father only had us. Our family holidays were marked by my mother’s cancer and my father’s work, later by my father being a single parent and a terrible cook. While not the kind of holidays our friends’ families had when we were kids in school, both I and my brother loved our Thanksgivings and Christmases. The oddness made them special and defined our family.
While the holidays are typically a busy and stressful time, they can be especially challenging for families with a loved one who has dementia. It's crucial to be mindful, as festivities might agitate, confuse, and overstimulate someone living with dementia. Simultaneously, caregivers may experience anxiety, frustration, and loneliness.
Breathing and mindfulness can be ways to decrease stress, focus, and create short breaks for yourself as a caregiver. Breathing exercises can also redirect and shift the attention of the person you are caring for. You do not have to be experienced to do these exercises. Just pay attention to yourself, your body, and breathing. Think of these short exercises as tools in a toolbox that help with care. Care for yourself is critical for you to care for others.
Sitting at a red light today, I happened to look up at my rearview mirror. Behind me was a silver convertible with the top down, in the convertible was an older woman with silver-grey hair pulled back, drumming her steering wheel, jamming to music on the car radio. We went different directions at the next light, but it was good to see this moment of happiness. Memories of road trips, music, fun and hope went through my head. It was good to see someone who was comfortable in her own skin enjoying a beautiful day. A short reminder that it is ok. We will be ok…
Yesterday one of our elders made a statement that stuck with me “My physical therapist says baby steps are important.” Our elder was discussing her frustration with recovery from knee surgery. Mostly she was annoyed and unsure. She forgets what she is unable to do, she also gets scared to move at all. This can happen at the same time. Somewhere in the confusion of the moment she realized that it was important to keep making baby steps and to keep trying. Our elders may lose memory, skills, independence but they keep wisdom, intuition, and awareness. Baby steps are important. Right now, baby steps are all any of us have. One of my friends is a grandmother several times over. She keeps pictures of her grandchildren on her phone. She has all their 1st steps recorded on her phone. That first set of often shaky steps means the world to her. In her eyes, these first awkward, shaky steps are more beautiful than any dance that any ballerina could ever create. Right now, in some way or another all of us are taking baby steps. COVID has been a constant challenge, it has brought limits that most people have never had to consider into life. Masks, gloves, distance, fear, loss, and isolation have been everyday life for the past year. Progress right now is slow. The social skills and connections that we have always relied on all our lives were put on hold for a very long time. We face the need to re-learn how to be together. We will be awkward and unsure for a long time, but eventually with baby steps we will learn to connect again.
At my door, the leaves are falling, the cold, wild winds will come. I still miss someone… I find a darkened corner because I still miss someone…
— Johnny Cash.
At 2:48 this morning, I came to a decision. Before getting up and adding Morgan’s favorite Star Wars comforter to the bed because I was cold then having a glass of milk, I decided that this year I will put up a Christmas tree. I have not done this yet, but I did make a choice. It’s tiny and inconsequential, but it is mine for now. For a reason I cannot explain, the idea of decorating a tree gives me peace. Last year there was no tree. Then, I was staying with a dear friend, in shock, exhausted and fearing for the future. This year, the holidays bring something else:. Another kind of grief that is both personal and collective and a sense of loss that touches every one of us in unspeakable ways. We are working our way through wild and scary darkness.
One of my friends, Hope, refers to grief as a wilderness. This makes sense to me. Wilderness lands are a combination of isolation, beauty, danger, potential, deep connection, risk, and renewal. Wilderness can be a place of solace. Wilderness is also scary and dangerous. COVID-19 has brought all of us to this wilderness. There is not one soul whose life has not been touched or altered. We have all lost. We all miss someone. We all miss each other. All of us know someone who is vulnerable. Many of us are vulnerable. All of us are tired. All of us are scared. This is an unknown place, a place of wild and weird things, a place of loss, a place of change, a place of pain. Grief can also be a place of rebirth, a place of deepening. Grief can be a place for love to grow and live.
Sanctuary: A place of refuge or safety. -Merriam Webster
“I’ll give you shelter from the storm.” -Bob Dylan
Like much else in our economy right now, there is a push to re-open assisted living homes and nursing homes. Last week, I joined a group of nationally recognized professionals discussing just this topic. Everyone on the 6-a.m. call wanted to advocate for the many struggling families and their elders.
I came into this discussion because I got frustrated and angry. After spending several days obsessing over video lectures and Facebook posts that blamed facilities for mistreating elders and their families and venting to my Vista family and friends, I sent an email to the Positive Approach to Care (PAC) about their Community Care Circle Round Table Discussion. Positive Approach to Care, founded by Teepa Snow, has developed deeply meaningful approaches to Dementia Care for decades. This group has focused on showing elders facing dementia respect and compassion and is an amazing resource. PAC has also been working with families to face the many painful issues that have arisen due to COVID and the isolation procedures that this virus has brought. My thought was that my email would either just get deleted or ignored. The opposite happened. Vista was invited to join this discussion about “Creating a Map for the Future During COVID” that respects elders and families. What Vista offers is a way to both protect elders and nurture families while allowing elders to have a vital, connected and joyful life.
Last count, 50,779 elders have died in assisted living and nursing homes. In total, that’s 45% of all COVID-related deaths in the US, according to the Center for Disease Control. These numbers are brutal reminders that our elders constitute some of our most vulnerable populations. But, how do we get past this? How do we create safe institutions and allow elders to have a full life? How can we give their families the connection and love they need while protecting just those elders? How, as caregivers, do we make this all work? And are there ways of providing sanctuary and support to our community of caregivers? I often wonder whether eldercare can positively grow as a result of the trauma of illness our society is facing.