Portraits of Dementia
*Names have been changed
She walks with an urgency that insists she has something important to do. Maria’s 4’7″ frame is strong and sturdy, her short-cropped gray hair neat and glossy. Her eyes are intense and she speaks rapid-fire Spanish that unfortunately the majority of the staff cannot understand. She is distressed. She is grasping to her chest a collection of items that she has gathered from around the building — a pile of magazines from the front desk, a fork, a pair of glasses that belong to someone else, a plant she pulled up, its soil still clinging to the roots and now on the front of her shirt. She wants to go home. She is searching for a way to get there and she is gathering her belongings for the trip.
Her family wants her to receive personal care while at the day center, but she is resistant, becoming frantic when she is led into the beautiful and soothing spa room with the large walk-in tub. She begins screaming and strikes one of the staff. She is not getting undressed. A Spanish-speaking staff comes to intervene and Maria tells her in a panic that she does not know these people. She will not take her clothes off in front of them.
She pushes past the staff and continues, more urgently, her search for a way to get home. Only she is not looking for her current home, where she lives with her children who are caring for her. She is looking for her home in Mexico, where she grew up and where her mother is waiting for her. Maria is 86 years old. She has advanced dementia.
According to the Alzheimer’s Association, every 65 seconds someone in the United States develops Alzheimer’s disease. There are an estimated 5.8 million people in the US alone living with Alzheimer’s, which is the most common form of dementia. This number is expected to explode as the baby boomers age, possibly reaching 14 million. These numbers do not tell the whole story, however.
For every person living with Alzheimer’s there are family members, and sometimes friends and neighbors, who are bearing the brunt of the caregiving. More than 16 million Americans provide unpaid care for someone with Alzheimer’s or other dementias. These caregivers provide an estimated value of care at nearly $234 billion.
Emma moves through the building with a maraca in her hand, going over every square inch of the furniture, beating it with the maraca and talking in unintelligible gibberish all the while. She is tiny but strong. She does not want to be stopped and is not easily redirected. She is irritating the other participants in the day center. An astute staff member remembers that Emma owned a cleaning service most of her life. She is working. The staff member quickly replaces the maraca with a rag and Emma happily makes her way around the building cleaning every surface, including, comically, some of the staff.
When Emma has to go to the bathroom, she doesn’t know how to say so and she sometimes digs in her pants to remove the feces that she has deposited there. She is taken to the restroom hourly, but she refuses to go in and becomes combative when the staff attempts to gently persuade her. Convincing her to allow them to help clean her up is a herculean task. Emma is 92 years old. She has advanced dementia.
Families are stretched to the breaking point, physically, mentally and financially. In 2013, Harry Johns, President and CEO of the Alzheimer’s Association testified before congress about the dire situation we are in. “For too many individuals with Alzheimer’s and their families, the system has failed them, and today we are unnecessarily losing the battle against this devastating disease.” It is estimated that over the next 40 years, the price tag for caring for those with dementia will be $20 trillion. The cost in human suffering, to the patients and the caregivers, will be even higher.
He comes through the door screaming obscenities at his wife. He does not need to be here, he is a grown man with important things to do and she cannot make him come here. She looks exhausted, the desperation on her face mixed with the anguish and heartbreak of dealing with the realities of dementia in her beloved husband of 57 years.
He began getting lost when he was driving and was forgetting to pay the bills, throwing the social security checks in the trash can. Then he began asking the same questions over and over again. When he began accusing her of cheating on him she was cut to the bone. His anger and strength scares her, but he is her husband and she loves him. She wants to keep him home with her and she brings him to an adult day center so she can. She gets a break during the day so she can sleep and clean house and go to the grocery store in peace. But she never really has any peace. She feels like she is falling apart, a new piece flying away from her every day. Why did this have to happen to them? James is 77 years old. He has advanced dementia.
Adult day care is a lifeline for so many of the families of persons living with dementia. By offering a safe environment for participants, families can get a much needed break from caregiving. A quality day care center will provide participants with nursing care, personal care (which includes baths, shaves, manicures, and salon services; in addition to help with toileting, walking and eating), and stimulation throughout the day. Families can take time for themselves and regain their balance by finding a safe place for their loved one while they work, rest and carry on with their daily responsibilities.
Charlene comes to me in the front hallway of the adult day center and softly cries. She says if I will just let her walk out the front door she will not hold us responsible for whatever may happen to her. She explains that she must get home right away because her children are cleaning out her home and her bank account as we speak. “I was going to leave it all to them when I died! They couldn’t wait.” She pleads with me to let her go. I place my arm around her shoulder and gently explain that her family would be worried if she were not here when they come to get her. She looks at me earnestly, imploring me to call the police. They will know what to do. Someone must stop her children from robbing her blind.
Charlene’s children are trying their best to give their mother the care she needs. They are making sacrifices, their own families suffering from the time and attention it is taking to care for their mother. They are exhausted. Caregiver guilt is a constant companion. Their emotions range from despair, to anger, to self-pity to grief. These emotions swirl around like dirty water in a storm drain, taking the debris of caregiver stress and leaving it scattered across their lives. How can anything be harder than this? Charlene is 69. She has advanced dementia.
There is little support for these caregivers in many cases. Physicians are often not educating families about the disease once it is diagnosed, or helping them find the support and services that they need. Families caring for a person with dementia are under a tremendous amount of stress and studies show that caregivers are more likely to develop dementia themselves. Isolation, depression, lack of sleep and poor self-care can all contribute to caregiver stress, which increases the possibility of dementia, or even early death from other causes.
In my experience from working with families, the lack of knowledge about the disease and it’s progression is the greatest handicap they face in caregiving. Understanding the range of symptoms and being given some strategies to cope with the seemingly irrational behavior of their loved one can go a long way toward easing the burden caregivers are carrying. Resources are out there and answers can be found, but families are many times on their own to find the services and help they need.
Earl looks around the room wildly. He is looking for someone. He must find her. He has to stop her. He begs me to help him find her. I allow him to take my hand and we walk up and down the hallways, looking behind every door. She must be here somewhere. I have to stop her. She is making a huge mistake! He is inconsolable. So we walk the halls and look until he is finally exhausted and gives up.
I convince him to sit down in a comfortable chair. I bring him a cup of coffee. Soon we are talking about baseball and the fishing boat he once owned. I wonder about the memory that is haunting him; what unresolved grief is coming back to torment him at a time when he can do nothing about it? Earl is 81. He has advanced dementia.
There is hope, however. There have been promising advancements for diagnosing Alzheimer’s disease, creating some optimism among researchers. There are better treatment options and diagnosis guidelines have changed, enabling earlier interventions in the disease. While there is still no cure, “experts are cautiously hopeful about developing Alzheimer’s treatments that can stop or significantly delay the progression of Alzheimer’s.”
Congress included a $414 million increase for Alzheimer’s and dementia research funding at the National Institutes of Health (NIH) in the FY2018 budget. There are people working worldwide to find a cure for this terrible disease. Until that day, the best thing we can do is educate ourselves, support those we may know who are caring for someone living with dementia and donate to the organizations that are seeking to find a cure.
There is hysterical laughter coming from the dining area of the day center. I look through the kitchen door and see two women, both with dementia, doubled over the table, one of them slapping the table while the other wipes tears from her eyes. Their laughter is contagious. Others at the table start laughing, too, even though they have no idea what the laughter is about. It doesn’t matter. They are obviously having a good time. They all have dementia, and yet there are moments like this all day long at the center. Smiles, laughter, conversations, empathy, friendships. Even though their brains are failing them, there are still moments of joy to be had.
I have had the privilege of working with people living with dementia for 7 years and I am always awed by the dignity, grace and strength they display, even while they are battling a disease that is slowly taking them away from their families and themselves. It is both heartbreaking and inspiring to work with them. Yet I hope someday I will no longer have a job. We all deserve a cure for this disease. Let’s work to see that it will come sooner than later — for all of us.
Beth Bruno is a horticultural therapist at an adult day center, using gardening and greenhouse activities as a form of therapy for those who are living with Alzheimer’s and other dementias.
Portraits of Dementia
Research & References of Portraits of Dementia|A&C Accounting And Tax Services
Source