Facing Alzheimer’s With Family

Facing Alzheimer’s With Family

Posted on Wednesday, July 30th, 2014 at 8:43 am by lifemediamatters

The Genius of Marian intimately explores the devastating effects of Alzheimer’s disease on a close-knit Northeastern family. The documentary, directed by married couple Anna Fitch and Banker White, focuses on Banker’s 61-year-old mother who is struggling with early-onset Alzheimer’s disease.

The film, made of blurry home movies, one-on-one interviews and family photos, opens with a scene from their 2009 Christmas celebration. Pam White offers her family a jar of macadamia nuts, but mistakenly refers to them as “acadania nuts,” foreshadowing a sharp decline in her cognitive abilities.

Pam, a former model and social worker, often smiles and retains a sense of elegance throughout the film’s most difficult moments. In one extended scene, she is unable to remember how to put on her coat and scarf. In another, she struggles to enjoy a fishing trip at the lake, to the annoyance of her husband, Ed, who serves as her primary caregiver. Not one scene is glamorized.

Pam

Pam White faces early-onset Alzheimer’s. Still from “The Genius of Marian.”

We learn that in 2008, Pam decided to write a book about her mother, acclaimed painter Marian Williams Steele, who died in 2001 from complications associated with Alzheimer’s. One year into the project, Pam was diagnosed, and was never able to finish it.

“I’ve never made a personal film before. The desire to move home, because we were based in San Francisco, was initially to help my dad out and make sense of things,” Banker told Life Matters Media. “I think it became clear that it could be a very powerful thing to share with other people. The film even helped our family communicate better.”

Anna first became acquainted with Pam through the earliest video recordings. “It made me think about my relationship with my parents,” she said. “I thought this would resonate universally.”

Early in the film, Pam seems to be in denial about her diagnosis. In a tense scene recorded while driving, Banker asks if she remembers her mother’s decline. “She had Alzheimer’s, and I don’t,” she replies. “Didn’t the doctor say that you did have early-onset Alzheimer’s?” Banker asks. “Careful!” Pam says, focusing her attention on the road. She is upset because she can no longer simply take the car and drive to the grocery store.

“There are definitely things that are awkward, but in a documentary you are tasked with managing a relationship between you and your subjects and being honest with the audience,” Banker said. “Alzheimer’s is such an isolating disease, because of the stigma attached with it and the requirements it puts on caregivers.”

According to the Alzheimer’s Association, nearly six million Americans face the irreversible disease, a number expected to increase as the baby boomer generation ages. Nearly one in six women 65 and older will be diagnosed in their lifetimes.

One of the most difficult effects of Alzheimer’s on family and friends is the slowness of the decline, Banker added.

“You are constantly reminded of who this person used to be, while you’re simultaneously losing this person, so there is no space for mourning. You are kind of overwhelmed with the responsibilities of caring and redefining your relationship,” he said. “But there is also a special side, because it does give you time. Some of the most special moments with my parents have happened over the last four years.”

Anna said she believes a lack of hope and response from patients is one of most difficult parts of the disease. “You’re caring for someone who is able to give you less and less as things get more difficult, and that’s just hard,” she added. “There is also no room for hoping it will get better, that there will be a better path ahead.”

In an effort to help patients and families share their experiences, Anna and Banker said they hope to launch an interactive story sharing website in the coming weeks.

The Genius of Marian, an official selection of the 2013 Tribeca Film Festival, will be broadcast across the nation Sept. 8 as part of the PBS series POV.


When Is It Time To Hire A Caregiver?

Posted on Friday, August 30th, 2013 at 11:03 am by lifemediamatters

Home Instead

When is the dividing time between when Mom or Dad can make it on their own and when he or she may need a hired caregiver? This question can be difficult and frustrating, but if you keep it simple­ you will know. Part of the answer lies within your gut, and the rest is left to your loved one. If that loved one was able to navigate daily life independently and now cannot­ it is time. If someone could drive and now cannot, if someone could bathe and now the process is too difficult, if someone was able to cook, clean and do laundry and now is unable due to deteriorating health or mental challenges­ it is time. These are all opportunities to seek outside assistance.

A family caregiver is a wonderfully special type of support when used in the right manner. What I hear most often from family members is that once they become the sole physical caregiver, they lose their role of son or daughter, husband or wife. Adult children would like to be just that, and they should be. I also hear from family members that they are doing the physical care out of guilt or due to financial reasons. Helping out with one or two challenges seems reasonable­ if it does not impact the family caregiver’s ability to attend to their own daily tasks. However, even one area of need­ like providing transportation­ may be taking too much of the family caregiver’s time and may become too much to handle. These are strong indications that it is time to seek out assistance for you and your loved one.

Some indicators that hired help and more constant supervision is needed:

  1. Your loved one continues to miss doses of medication or is taking the wrong amount.
  2. You are having difficulty getting your loved one out of bed or out of a chair.
  3. Your loved one is bed­bound, and it is hard for you to turn or position him or her.
  4. Your loved one falls repeatedly.
  5. Your loved one has developed pressure sores or has complex wounds.
  6. You are feeling overly tired and are not getting enough rest.
  7. You are short­tempered, angry or depressed.
  8. You find that you do not have time to complete your other daily tasks.

Whether covertly or overtly stated, guilt seems to be the most frequent feeling that family caregivers describe. If your loved one is being assisted by a hired caregiver and all needs are being met, then why feel guilty? Are you still visiting or calling? Are you now able to be that loved one’s family member? If you still feel such guilt, I invite you to look into the reasons why. Do they include financial concerns, a lack of resources, or not enough emotional support? A definite indication that change is necessary occurs when your own life is impacted to the point in which you are unable to attend to your daily responsibilities.

Where to find local resources for answers:

1. For finding caregivers to hire, nursing facilities, assisted living, supportive living (i.e. financial eligibility requirements) and memory care places, ask your local hospital social workers or senior social services agency. Call them to inquire.

2. For transportation needs, call your city, town or village. Also investigate local taxi companies or public transportation.

3.For additional resources, seek out assistance from your local senior services agency. They have a plethora of answers!


LMM Founders on Barriers to End of Life Care for Chicago’s Public Radio

Posted on Friday, July 19th, 2013 at 5:58 pm by lifemediamatters

The barriers standing in the way of the best end of life care are numerous. Randi Belisomo speaks with Dr. Julie Goldstein of Illinois Masonic Medical Center, Dr. Mary Mulcahy of Life Matters Media and Ronette McCarthy of Elements Cremation for the Morning Shift.

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LGBT Seniors Fear Discrimination From Caregivers

Posted on Monday, July 1st, 2013 at 12:00 pm by Life Matters Media

Dozens of seniors and medical providers crowded into the Unitarian Church of Evanston, Illinois Saturday to watch “Gen Silent,” a critically acclaimed 2011 documentary highlighting the fears many seniors in the LGBT community have about end of life care.

Directed by Stu Madduxthe film chronicles the lives of six seniors living near Boston. They go back-and-forth recounting their experiences growing up during the onset of the gay rights movement and sharing their present struggles– ranging from fears of abuse from long-term care providers to judgmental caregivers and family members.

“When someone’s facing the end of life and feeling alone and isolated it’s incredibly sad,” said palliative care physician Catherine Deamant, a member of Chicago’s End of Life Care Coalition. Many in the LGBT community are afraid to show their “true selves” to caregivers for fear of bullying, she said, and long-term care facilities tend to overlook the individual.

“Many who won the first civil rights victories for generations to come are now dying prematurely because they are reluctant to ask for help and have too few friends or family to care for them,” according to the film’s website. Oppression from the years before the Stonewall riots continues to linger with those in the film.

The audience was clearly moved by the hour-long film, with many wiping their eyes or shaking their head with disapproval at some of the film’s more emotional moments. “I find it very frightening what lies ahead of me,” one man shouted out during the discussion. “Is this another reflection of how we handle the elderly? Why should it be different for any other group?” a woman asked.

The film, similar to the 2012 Oscar-winning drama, “Amour,” did not shrink away from showing the hard truths of aging, including scenes of hospitalization and loss of strength. “I think they saw the full humanness of the people in the film– they weren’t one-dimensional,” Deamant said.


More Male Caregivers Emerge As Demographics Shift

Posted on Wednesday, March 27th, 2013 at 8:30 am by Life Matters Media

As millions of baby boomers enter retirement and as medical technology allows seniors to live longer than ever, more men are becoming caregivers for their loved ones, upending stigmas that caregiving is the work of women. As a 2012 Pew Research analysis on family caregiving shows, 45 percent of U.S. caregivers are now men.

Couple by George Hodan

Couple by George Hodan

The increase has been swift and substantial. Just about fifteen years ago, only some 19 percent of those looking after older or disabled family members were men, according to ABC News and the National Alliance for Caregiving.

“[I]ncreasingly men are being thrust into (or welcoming) the role of caregiver- for their children and/or aging parents- while working full-time jobs,” writes caregiving expert Alexis Abramson for The Huffington Post.

Cultural changes about what constitutes masculine and feminine work also seem to be contributing to the rise in male caregivers.

According to analysis from Leann Reynolds, a contributor to the Good Men Project, “Such an increase in the proportion of male caregivers can be explained by a combination of social and demographic changes,” such as the greater geographic separation of family members, smaller families and shifting gender roles.

As Richard Nix, executive vice president of Aging Care, told ABC News, “It’s OK for men to cry now.”

Workplace discrimination

Still, some male caregivers face discrimination from the workplace for their time spent caregiving. According to Abramson, male caregivers may “unfortunately face a tougher time than women from employers who are used to caregivers being, well, women!”

She writes how male caregivers are more likely to be victims of “caregiver stigma,” as caregiving is associated with feminine traits, that she insists, are not yet valued in the workplace. “Sadly a man who requests time off to take his elderly mother to a doctor’s appointment might just as well be announcing plans to attend a retreat ‘to get in touch with his feminine side,’ ” Abramson writes.

Similarly, Fortune and CNN Money report that the growing number of men taking on caregiving roles has contributed to the overall spike in employee discrimination claims, analysis confirmed by the Equal Employment Opportunity Commission.

“Employers are often more relaxed in applying blatant sexual discrimination against male caregivers,” Elizabeth Grossman, an attorney in the EEOC New York district, told Fortune. “When invoking parental leave, some supervisors might say ‘Oh no, that’s for women.’ There are some pretty entrenched stereotypes.”

The Center for WorkLife Law reports how one man was told by supervisors he would be “cutting his own throat” if he took time off to care for his sick father.

From 2006 to 2010, 147 family responsibility discrimination cases brought by male plaintiffs were decided in court, according to data from WorkLife. Fortune estimates this data reflects a 300 percent increase compared to the number of such decisions from 2001 to 2005.