A Marriage to Remember: A Touching Short Film on Alzheimer’s

In a new short-film documentary entitled A Marriage to Remember, filmmaker Banker White takes a starkly intimate look into his parents’ struggle with his mother’s early-onset Alzheimer’s disease.

In her youth, Pam White was a model and an actress. Later, she devoted her entire life to her family and her kids. Now, they’re paying her back with around-the-clock in-home care.

The film visits Pam at an interesting moment in the course of her disease. For the most part, she’s still in command of her mental faculties. In one candid car ride, her son asks whether the confusion has been difficult for her. Wittingly, she replies, “I’m not confused. You think I’m confused?”

She isn’t arguing or in denial. She’s just being precise. Confusion isn’t exactly her issue just yet. Ultimately, Banker agrees. That wasn’t the right word.

It’s a telling moment that keenly illustrates the sneaky progression of Alzheimer’s. Here is a woman who still recognizes, still remembers, still engages in conversation, and is clearly still quite sharp. And yet she is also undeniably struggling.

Her husband has to pull her out of bed and help her shuffle from one room to the next and down the stairs. He tells us that the change in just one year has been “profound.” Her son says there are early mornings where he’s sure she doesn’t recognize them at first. “That is beginning,” her husband says.

But while the narrative of Alzheimer’s is often a sad one, sorrow is not the prevailing sentiment in A Marriage to Remember — and that is what makes it so impactful in its brief, eight-minute runtime.

“Initially, I was quite distressed,” Pam tells us. “…But it doesn’t really change anything… I don’t feel sad and I don’t feel regret. I feel blessed that I have this wonderful family and a husband who is extraordinarily wonderful.”

Blessed. What an outlook. And truly, the film is as much husband Ed’s story as it is Pam’s. It reveals the unshakeable strength of a marriage that is so strong that not even Alzheimer’s can break it. Theirs is a love for times both better and worse. It is truly inspiring.

Silver linings and love help to redeem even the darkest diagnoses. A Marriage to Remember is a testament to that. It’s a very short film, and I think you’ll be glad you watched it. You can find it streaming for free at The New York Times.

If you and your family are currently going through an Alzheimer’s experience of your own, I also recommend getting in touch with the Alzheimer’s Association of Massachusetts and New Hampshire, as they offer a number of programs and services that can be of great help.

Amy Grant’s Three Tips for Family Caregivers

Amy Grant has made a career out of inspirational storytelling in song, earning six Grammy awards and more than thirty million record sales along the way. She’s one of the best-selling female recording artists of all time, but now she also has a new job title on her résumé: long-term care provider.

Grant’s parents were each diagnosed with different but severe forms of dementia late last decade. Her mother passed away in 2011, an experience that informed most of the songwriting on Grant’s most recent album, released in 2013.

Her father, meanwhile, still suffers from dementia so profound that he has lost nearly all his ability to communicate.

Grant sat down with Guideposts magazine to share three insights she’s found throughout the heartbreaking journey she’s taken with both her parents. Her tips for family caregivers include:

  1. Frame your experience in a way that gives meaning to what you’re going through.” Grant said that the key for them was finding a silver lining in an otherwise trying experience. “This is the last great lesson that we’ll learn from our dad,” she says.
  1. Spread the responsibility. Grant recommends making a list of all the people to whom this aging person matters. Rather than allowing an excessive burden to fall on just a few shoulders, encourage extended family and friends to realize that they’re a part of the puzzle too. She concedes, though, that relating to someone with dementia can be challenging for some family members, especially youngsters.
  1. Start preparing to fund long-term care as soon as possible. While Grant’s dad was a successful doctor and she herself has gone on to enjoy superstar fame, she recognizes that most families aren’t as fortunate. She stresses the need for parents and children alike to consider insurance and long-term care planning, even if everyone in the family is still in good health.

Her advice is well taken, and it is nice to see someone in the public eye shine a light on the need for long-term care planning, even as it comes in the midst of her personal sadness. For more of Grant’s eloquent and inspiring story, watch her Guideposts interview online.

Rules Governing Care Of Dementia Patients In Massachusetts Amended

Workers in nursing home dementia care units will now have to receive eight hours of initial training plus four hours of additional training every year, according to rules recently adopted by state regulators. The new regulations also require such facilities to have, at the very least, one therapeutic activities director. The therapeutic activities director is responsible for ensuring residents in the dementia unit are provided with appropriate and meaningful activities.

Dad at Diamond Ridge Healthcare Center (Novemb...

(Photo credit: cseeman)

These new regulations close a legal loophole that permitted nursing homes to advertise their dementia units without actually providing workers with specific training or residents with specialized activities. The regulations were finalized by the Public Health Council, an appointed body of health advocates and academics that sets public policy.

Another change that has been under discussion of late is the requirement for a 6-foot fence surrounding outdoor areas, with the goal of preventing residents from wandering away and becoming lost.

However, some nursing home operators objected to this change, arguing that facilities in urban areas might never be able to meet a requirement mandating that residents have access to outdoor space if 6-foot fences were required. Other operators said that fences this high could reduce residents’ enjoyment of the opportunity to be outside in the first place.

The Public Health Council came up with a compromise, requiring that nursing homes with dementia care units must have a “fence or barrier to prevent injury and elopement.”

It is important to note that the new regulations require that all licensed nursing homes, not simply those advertising dementia units, must provide dementia-specific training for every direct-care worker within 180 days.

As a dedicated Massachusetts elder law attorney, I applaud these new regulations and invite you to click on the link below to learn more about them.

http://www.bostonglobe.com/lifestyle/health-wellness/2014/02/13/dementia-care-rules-finalized-for-massachusetts-nursing-homes/ruU64q0mgJ4Db7dVegROyK/story.html