Casey Kasem’s death on Father’s Day reminds us that caregiving is about more than emotional, physical and financial issues. These can be overshadowed by the legal complications of family conflict.
Kasem’s biggest legacy will of course be his phenomenal voice. The beloved DJ brought us the latest music hits week after week for more than 20 years on American Top 40 and voiced the character Shaggy in the cartoon, Scooby-Doo. But he also leaves behind a cautionary tale about caregiving.
In the last years of his life, Kasem’s family was torn in two over his long-term care — on one side were his older children from his first marriage and on the other, was his second wife of 33 years, Jean. Sadly, situations like Kasem’s are on the rise.
Caregiving Talks That Happen Too Late
“Family conflict, especially over an older parent’s long-term care, is a common theme in my office,” says Judd Matsunaga, an elder law attorney in California.
Matsunaga, who counsels older parents and adult children on family trusts and living wills; the legalities of Medicare and Medicaid and elder care legal documentation, says he has found that the caregiving conversation among family members typically happens three to five years too late.
He often finds himself playing referee among battling siblings or trying to stop the drain on a parent’s finances when the family hasn’t planned ahead for long-term care.
When Access Is The Issue
In the case of Kasem, the legal struggle was not about money as much as it was about access. Kasem’s three children from his first marriage to actress Linda Myers said their stepmother was blocking them from seeing their aging father over the last several years when he was diagnosed with Parkinson’s disease. According to Kerri, Mike and Julie Kasem, they were not allowed to visit as their father's health slowly declined. They claimed elder abuse, since their stepmother was isolating them from Kasem.
In the last few years of Kasem’s life, his oldest daughter, Kerri, took her plea to the courts. As recently as May, she was granted temporary conservatorship, making her the primary caregiver for her ailing father.
The family’s caregiving saga took a dramatic, TV-movie-of-the-week turn when Kasem went missing after the conservatorship case ruling. He was apparently moved to Washington state by his wife. But Kasem's caregiving daughter was unable to locate her missing father. More legal machinations ensued, and adult protective services was called in to help in the search.
By the time Kasem succumbed to the ravages of Parkinson’s on June 15, a judge had ordered the family to come to a visitation agreement, and his oldest children were able to see him before he passed — a small blessing in a years-long legal struggle.
While spouses in most states are recognized as primary decision-makers for incapacitated spouses, without certain documents (including a durable power of attorney for medical and financial decisions, a living will and a health care directive), many families engage in legal wrangling that make the Hatfields and McCoys look like a simple neighborly squabble.
We only have to look back at the Terri Schiavo situation to see how long and fraught caregiving legal battles can become. In Schiavo’s case, the legal tussle was between her husband and Schiavo’s parents. For 15 years, Schiavo remained in a vegetative state as both parties exhausted their emotional and financial resources in court.
Legally Bound to Care
In the U.S., there are little-known laws in 29 states actually mandating that children care for their parents.
Ramsey Brawley, an elder law attorney who practices in Massachusetts (which has such a law), says that as we face an ever-growing aging population, we will encounter more legal complications for families struggling with long-term care.
Brawley cites an online discussion among caregiving experts on LinkedIn for the myriad of issues that can arise from forced caregiving: “For instance, what if the parent was abusive, would you force an adult daughter to now care for that parent financially or physically or emotionally? What if the adult children are struggling financially, must they now add to their burden a parent who did not plan properly for long-term care? How about a father who had not talked to his daughter in 40 years, yet the nursing home where he expired went after her to pay his unpaid bills? Or the adult couple who have both in-laws to care for simultaneously while their mutual siblings refuse to help?”
(MORE: What Do We 'Owe' Our Parents?)
The question of caregiving raises many issues we do not want to face.
But denial and lack of planning can bring legal, financial and emotional woes greater than we could have imagined. At least by having the caregiving conversation with everyone and ensuring a loved one’s wishes are legally documented, families can face the unknown caregiving tasks that lie ahead without spending all their time, energy and money on battling each other.
Kasem may have been the voice that helped listeners across the country count down the week’s favorite tunes. But in the end, his family would have been well-served in hearing his voice tell them all at the same time what his wishes were for his end-of-life.
How to Have the C-A-R-E Conversation
The caregiving conversation rule (also known as the 40/70 rule), according to Home Instead, an in-home senior care service provider, is: If a caregiver is age 40 or a parent is age 70, then families should have the talk about long-term care and end-of-life wishes.
Here is my formula for the C-A-R-E Conversation℠ taken from my book A Cast of Caregivers:
C — Create the caregiving conversation. Use recent stories about Glen Campbell struggling with Alzheimer’s disease or Casey Kasem and his family turmoil as he declined with Parkinson’s disease as an icebreaker to talk to your own parent about his or her long-term-care plans and wishes.
Another good resource is the 5 Wishes document ($5), designed to guide families through the hardest decisions about end-of-life care.
A — Acknowledge their wishes. Caregivers may feel they know best, but it is their role to be a partner and collaborator in what the parent wants. Caregivers can be counselors, but in the end the parent is the one to decide.
R — Review all legal, financial and other documentation. Consulting with an elder law attorney is beneficial, since laws change constantly.
These legal experts can be found through the National Association of Elder Law Attorneys (NAELA). Also, it is wise to review these documents every five years or so, in case circumstances changes and documentation needs updating.
E — Engage the whole family. Sometimes, family conflict can hasten a loved one’s demise, cause undue stress and bring about feuds that last for years. Avoid the conflict by bringing in a care manager.
Many employers offer care manager services through employee benefits or find these caregiving experts through the National Association of Professional Geriatric Care Managers (NAPGCM).