I have enjoyed reading your thoughts and reviews on Beneath the Stars in the 2+ weeks since its release. Now that I’m hearing back from readers, I’d like to dive into the themes of the story a bit more. While Beneath the Stars is most definitely a romance–of sweeping, epic proportions–underneath the romance lies a painful, difficult story of a father living with dementia and his family’s often fumbling attempts at properly caring for him.
I called on the knowledge of Dr. Julia Durrant to help me get these details right. She is a physician in Portland, Oregon with training in internal medicine and neurology. She works in the neuroscience critical care unit and takes care of brain injured patients.
Because dementia is such a widespread disease, I asked her to join me on the blog to discuss the disease, the weight it puts on both patients and caretakers, and how that all integrates into the story of our leading men and their families. My utmost gratitude to Dr. J for taking time out of her insane schedule to do this. I hope if you know someone caring for a loved one with dementia, or you yourself carry that burden, that you might find comfort, information and hope in this two part series.
Can you explain, in layman’s terms, what exactly dementia is and what it does to a person’s brain and body? How is dementia not always Alzheimer’s Disease?
Dementia is a broad term for progressive loss in mental ability that interferes with daily life: memory loss, disorientation, behavioral changes, personality changes, and mood swings. Dementia can change the way a person thinks, feels, functions and communicates. There are several different diseases that cause dementia. The most common is Alzheimer’s Disease, which is a slowly progressive brain disease that occurs because of deposits of abnormal proteins in the brain cell. But there are other types, such as dementia that occurs because of Parkinson’s disease or because of ischemic strokes.
In Beneath the Stars, Lou Marneaux is in a less-advanced stage of vascular dementia. What are some early signifiers of the disease? What are some things Lou’s family might have seen to alert them of his issues?
A lot of patients with dementia start with a milder form called Mild Cognitive where changes in memory recall become noticeable. They’re not as sharp; they forget appointments or get lost in familiar places. They might say things they normally wouldn’t; they are more impulsive or judgmental. It usually doesn’t interfere with their daily lives—they can still eat, dress themselves, and work—but there will be a slow, progressive loss of function.
“Zico! Come over here!” Lou’s voice rang remarkably strong. And, with Tyler at his wheelchair’s helm, he was suddenly close by.
Sid handed Anna the tongs. “More sauce and they should be ready.” He pulled up a lawn chair to sit with his dad. “Sorry, Baba.”
“You know I don’t like you speaking to your mother that way.” As Anna walked by with the platter of chicken, Lou smacked her ass.
“Dad. Look at me.”
“Who is that?” He pointed at Anna who had stopped and, with a silent plea, implored Sid to let it go.
“Well, that’s your mother—” Lou looked at his daughter and grandson. “Where’s Rimi?”
“She’s not here, Baba.”
Most families aren’t aware of the early stages because they’re passed off as normal signs of aging: losing keys, forgetting titles of movies or their actors. But when the changes start to impact the patient’s life—an inability to write checks and pay bills, confusion following simple directions, repeating stories and phrases in the same conversation—it becomes more concerning.
Anna is Lou’s daughter and full-time, in-home caretaker. What are some of the unseen burdens caring for a parent in your own home?
Caregiving is sacrificing and consuming. It’s a chronic, long-term situation, and the benefits from it aren’t often visible or appreciated. Depending on your loved one, burdens of meal preparation, medication administration, assistance with basic needs (such as dressing and toileting), and transportation often fall on the shoulders of the caregiver. Relationships with other family members—a spouse, siblings, the other parent, and children—can suffer as they often take a back seat to the caregiving responsibilities.
“You don’t know what the constant care of him is like: the doctor appointments, the ups and downs of his moods. He grabs my breasts!”
“He thinks you’re Ma.”
“Sid, he never did that to Ma… in front of people?”
“It’s the disease,” Sid said. “The doctor’s—”
She charged on as if Sid hadn’t said a word. “He’s clumsy, and at least once a day I’m on all fours cleaning up a mess. It’s day in, day out, and at the end of a day I think has gone well, he’s yelling because the dishes aren’t done.”
Sid had cleaned up his share of their dad’s messes. He’d been yelled
at for how cluttered the living room was. He’d taken him to plenty of
doctor appointments in the last months.
That being said, it can also be rewarding. Caregivers often report a great sense of satisfaction for being to provide these services to their loved one. They enjoy the companionship and connection that they can create with their parent in their final years.
With those huge burdens, what are some self-care suggestions you might offer in-home caretakers?
- Sleep. I always tell my patients and their families that a rested brain is a brain that can calmly make decisions.
- Take time for yourself. Eat healthy meals and get regular exercise. Allot time for yourself. Seek out respite care. There are care providers who can come in and relieve the caregiver for a few hours. This can be done by other family members or by paid professionals.
- Therapy. Caregiving is very demanding emotionally, as well as physically, and it often translates to stress and fatigue. Meeting with a therapist who can validate your experiences can be helpful. Also be sure to see your own doctor regularly for checkups.
- Find local support groups. They can be helpful to the caregiver to know others going through something similar, but can also provide opportunities for socialization for the patient.
- Allow yourself to say no. There may come a time when providing primary care is too much of a burden. Saying that this is enough, that you have done what you can, can be liberating.
Sid, the protagonist of Beneath the Stars, has the precarious role of part-time caretaker. He relieves Anna as often as he can but also maintains the responsibilities of his life out of town. His concern focuses on how difficult dementia is for their father. With that in mind, what are some things that might concern the patient? How does fear, anxiety and physical exhaustion play a role in their health?
Each person is going to react a little differently. Some patients are aware of their decline and the loss of their mental abilities. Some are not. People with dementia often have feelings of depression, anxiety, aggression and mood changes, often because there is fear and uncertainty with the memory loss and the loss of independence. Add in the loss of inhibition or the self-filter, it can make people with dementia act in unpredictable ways.
“I know. But, I’m in Chicago, Baba. Please get your calendar.”
“I have it right in front of me.” Sid heard Lou’s finger drum against a counter, and imagined him poking a date. “Today is… Saturday, not Sunday. You’re in Chicago?”
Sid took a deep breath and tried to focus on Eddie’s steady hand rubbing his back. “Yes. I’m in Chicago. Go back one day. What does it say in blue?”
“Your color is blue. It says, ‘Sid in Chicago.’ Oh.” Sid looked to the sky. His eyes filled with tears as his dad processed his mistake. “Did you have a soccer tournament? Did you win? You’d have called me if you won, right?”
“We, um. We play tomorrow, Baba.”
“Oh. Well. Good luck then.” Lou breathed heavily, erratically, into the phone. “Sid, I’m confused. I don’t feel like myself.”
“That’s okay. It happens sometimes.”
Dementia is often a symptom that comes along with other medical conditions, such as diabetes or strokes. Getting proper medical help for those conditions can help in the overall well-being. Mental disease–such as depression and anxiety–can be treated in dementia patients and can often relieve stress on the patients and their families.
I’ll be back Thursday with the remainder of this q&a. My thanks again to Dr. Durrant for taking time for us.
Beneath the Stars is available now at Interlude Press and most book retailers. Purchasing links are in the right sidebar.