Dementia Caregiving: When the Child Becomes the Parent

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“I didn’t realize the challenges I would face. What I knew and accepted was that I didn’t want to move my mom into a facility that was void of any personal contact and familiar association of her past life, regardless of her awareness. I refused to not be there when she had her moments of cognition and wanted to hug someone or to reach out and yell ‘Why Me?’ and then was alone.”

Jodi Lee Jacovitz is the primary caregiver for her mother, Natalie. She loves her mother and feels a strong sense of responsibility to take care of her as dementia slowly whittles away at her memory and cognitive function. But as many like her eventually realize, the challenges of caregiving are not easily faced alone.

Being a caregiver for a person with dementia is one of the most difficult roles a person can undertake. Similar to caregiving for other types of conditions, dementia caregiving requires enormous physical demand and incurs high levels emotional stress, which can take a toll on the caregiver’s mental and physical well-being.

Ivette Casiano’s life was turned upside down when she moved her father from Puerto Rico to her home in Florida. Her relationship with her “significant other” ended abruptly, because this person was not prepared to be enmeshed in caregiving responsibilities. Ivette had to find a new home that better accommodated her father’s needs.  She had to give up her dog. Her social life evaporated. Her performance at her full-time job has suffered. Her father’s limited income from Social Security and a small pension do not cover the costs of his care, which means they are quickly mounting debt on his credit card.

“It has been very stressful acclimating to this new life,” Ivette confessed. “I am not happy.”

Most notable for dementia caregivers is the duration of caregiving responsibilities. One study estimates that a slight majority of non-dementia caregivers (54%) are required to provide caregiving activities for less than one year. Compare that with 70% of dementia caregivers who provide care for more than one year; 31% of them provide care for more than 5 years.

Diane has been caring for her father Neil since shortly after his diagnosis of dementia nine years ago. The signs that it wasn’t safe for him to live on his own multiplied quickly: forgotten medications, errors in keeping up with regular household expenses, wearing the same clothes day after day. For a man as meticulous as Neil, this behavior was alarming. Diane and her husband still care for Neil in their home. They help him with the majority of his daily activities including bathing, cooking and using the television.

More than 15 million people in the United States provide unpaid care to individuals with dementia. The vast majority of these unpaid caregivers are family members. Jodi, Ivette and Diane are part of a group that comprises one-third of these family caregivers: daughters. Moreover, an estimated 25% of dementia caregivers are caring for both their parent and a child under 18.

“More and more frequently, the primary caregivers of our clients are their adult children,” said Crystal Collier, Director of Adult Day Health Services at the Kane Center. “These caregivers are trying to hold down full time jobs, take care of their children and spouses, plus navigate the ever-evolving and increasingly demanding needs of their parent with dementia.”

Jim Van Hart and his wife are on their second round of caring for a parent with dementia. They were the primary caregivers for his father, who passed away three years ago. Now his mother Edith, who is 91, is experiencing short-term memory loss. Though Jim describes his mother as “self sufficient,” he lays out her clothes every day, helps her with bathing, does all her grocery shopping and cooking, and is her driver for all outings and appointments.

“Both of my children are in college and I work from home, so it gives me time to take care of my mother,” he said. “It is very rewarding, at the same time difficult for my wife and me. Some days are harder, longer than others, but as hard as it may seem some days, I wouldn’t change a thing.”

Caring for a loved one with dementia is not a task to be undertaken alone. Support is available through professional caregiving services and advocacy groups like the Alzheimer’s Association. Jodi, Ivette, Diane and Jim have all found a helping hand in the Adult Day Club at the Kane Center.

 “The Kane Center was ‘The Place,’” said Jodi. “The entire organization hooked me in from the moment I went through the doors. Since [my mom] has been going, she feels a [sense of] purpose and enjoys herself. [It] also saved my sanity by providing great caregivers to help us a few hours a day so I could work part time and take care of my own personal needs.”

The Kane Center’s Adult Day Club combines a research-based approach to Memory Care with a variety of Health, Wellness and Enrichment Therapies. It’s called “the Club” because it provides opportunities for clients to socialize and participate in activities similar to the ones they did prior to the onset of dementia in an environment where they can feel safe, secure and supported.

In addition, the Adult Day Health staff understands that for the caregivers who come pick up their loved ones at the end of the day, their work has just begun. The stress of caregiving pays a heavy toll on dementia caregivers. More than one-third of dementia caregivers report a decline in their overall health during their time as caregivers. The stress is exacerbated by a feeling of isolation and lack of support from the health care system.

To help fill this gap in support, the Kane Center offers a wide variety of free caregiver support and training resources, including monthly support groups, caregiver training workshops and educational seminars hosted by nationally recognized dementia care experts. The Day Club is also open on Saturdays, which gives caregivers an additional opportunity to take advantage of much-needed respite time.

“Our focus in Adult Day Health is as much on supporting the needs of our clients as it is on supporting the needs of their caregivers,” said Crystal. “Alzheimer’s and dementia are extremely difficult diseases to understand, and family caregivers are typically thrust into the situation with no time to research or prepare.”

Attending training sessions and support groups takes time, a luxury that not all caregivers can afford, particularly younger caregivers are also juggling professional responsibilities and taking care of children. But at the very least, the caregivers whose parents attend the Adult Day Club have a few hours of peace of mind every week.

“The Kane Center is truly a life saver for me,” said Ivette. “I appreciate everything [they] do and how [they] have gotten my father to enjoy being there. He has even requested to go a third day.”

Diane feels a similar sense of relief with the positive experience the Club has had on her father.

“The Kane Center’s adult day care is truly a godsend for us, because he enjoys it immensely. My mind is at ease because I know that he is in a good place surrounded by people who care for him and love him, and there is no better feeling that that."

The Charles & Rae Kane Center, 900 SE Salerno Road, Stuart, FL 34997

Area Agency on Aging

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