Recently, Kerry Peck of the law firm of Peck Bloom LLC and his wife Hillary invited us to join their table for the Alzheimer’s Association’s Rita Hayworth Chicago fundraising gala. I am unaccustomed to attending formal black-tie events, but this one was worth the effort. Princess Yasmin Aga Khan is the gala’s general chair. Princess Yasmin is the daughter of the 1940s-1950s screen star and pinup girl Rita Hayworth and Prince Aly Khan.
Rita Hayworth was the first “reel life” glamour star to become a “real life” princess. (Grace Kelly was the second.) Unfortunately, in 1981 Rita was diagnosed with Alzheimer’s Disease. In those days very little was known about both the illness and proper caregiving. Yasmin left her career as an opera singer to become her mother’s conservator and chief caregiver. Following her mother’s death, Princess Yasmin dedicated herself to honoring her mother’s memory by promoting awareness of Alzheimer’s Disease and fundraising in the hope that one day there will be a cure. The annual Rita Hayworth galas, which are held in Chicago, New York, and Dallas have raised millions of dollars.
The theme of the event was “The World is a Circus” and featured acrobats, jugglers, and Cirque du Soleil style acts. For Rose and me, it was a true joy to attend this fundraiser with our great friends Kerry and Hillary, our daughter and son-in-law Diana Law and Chris Jarot, and other friends of the Pecks.
After dinner we danced until 11, when the raffle winners were announced. Much to my amazement, my wife Rose and my daughter Diana were both “major award winners”! Seriously, there were over 500 people in attendance and only five raffle prizes. Rose won #4 and Diana won #5. I feel like a winner, too! It is my honor to have attended this event the Pecks and their dear friends. Thank you, Kerry and Hillary!
Please consider joining us in donating to find a cure for Alzheimer’s Disease.
Recently I was sitting down with some very good friends when a cell phone rang. A look of worry shot across my friend’s brow as he looked at me and apologized, “I’ve got to take this call… my Dad’s missing! He’s gone wandering…” I could not help but listen as he spoke to relatives several hundred miles away. He murmured hopefully, “Maybe they’ll bring Dad to the shelter.” After saying goodbye he looked at me with pain across his face and said, “Nobody knows where he is. He’s got Alzheimer’s, and my mom can’t keep him in the house anymore.” About 30 minutes later he got the call that Dad had been found and everything was okay—this time. As I sat there, I wondered if my friend knew of some of the resources available to help keep track of vulnerable or wandering loved ones—and it occurred to me that our readers may also be unaware of some of these resources.
One of the reasons that having a wandering relative afflicted with dementia is so frightening is that they don’t act (or react) in the same way that a typical lost person would. A helpful page at Ask.com explains how wanderers with dementia will not cry out for help or respond to your calls to them, nor will they leave many physical clues to lead you to them. What a wanderer is likely to do is go to an old place of residence or a favorite location.
Luckily, there are resources out there to help with wandering relatives—so you don’t have to just wait nervously by the phone. One of these resources is the Medic-Alert Safe-Return program detailed on the Alzheimer’s Association website. This program provides 24-hour nationwide assistance and supplies members with an individual emblem engraved with the program’s emergency response number. If you want to try to stop wandering at its source, the Mayo Clinic has a page detailing some of the reasons why elderly relatives may wander, and includes some suggestions on how you might prevent it. But remember—no matter how much you do, Mom or Dad may still wander. Don’t blame yourself if it happens!
The best thing to do is be prepared for the occasions when the wandering does happen. Use the resources provided above, and keep other relatives and caregivers informed.
About a year ago, for reasons I can’t really explain, I wanted to find out what books specifically for children had been written about Alzheimer’s. It was easy to find a book called What’s Happening to Grandpa? by Maria Shriver. When I went to Amazon.com to find out more about Maria Shriver’s book, I saw a review that said that “Dr. Ann Frantti wrote a book entitled Grandma’s Cobwebs several years ago on the same topic. Unfortunately, Dr. Frantti doesn’t have the benefit of Ms. Shriver’s ‘star power’ in terms of getting publicity about Grandma’s Cobwebs, but her book is excellent.”
How do you find and retain a great caregiver for a loved one with Alzheimer’s Disease?
Many of our clients and client families struggle with disabilities and/or long-term diseases. The majority are impacted by the progressive dementia caused by Alzheimer’s Disease. Alzheimer’s often causes people to lose what my mother, Gloria, calls our “thin veneer of civilization.”
I spoke with Mike Rohan of All-Trust Home Care to seek answers as to how our AD clients can stop the problem of caregivers coming and going. Mike’s firm provides professional caregivers in the home environment, as well as assisted living and nursing home situations. He shared with me that his company used to have a constant problem in staffing for Alzheimer’s clients; caregivers would often quit or demand reassignment after only a week or two. He said, “People with AD can present challenging behaviors, such as screaming, repetitive questions, paranoia, non-cooperation, and even violent aggression. Very few caregivers have been trained in how to deal positively with these challenges.”
Mike decided to seek out a solution that would serve both his employees and the All-Trust clients. He signed up for a program offered through the Alzheimer’s Association called the “Best Friends Approach to Dementia.” Mike has also attended the “Train the Trainer” classes for the best friends approach. After completing the program, Mike began to teach his firm’s caregivers how to implement the Alzheimer’s care ideas included in the best friends approach. The results have been nothing short of revolutionary. It has worked out so well, that now All-Trust offers a training class every other Friday at their Westchester, Illinois office. The classes are open to their employees, client family members, and when there is space, members of the community.
Caregivers have responded very positively to the training. And they now have the tools that need to communicate effectively with their clients, despite the barriers of the clients’ dementia-related behaviors. The quality of life for both the caregivers and care receivers has been remarkably improved. In fact, Mike smiled broadly when he stated, “Before we implemented the best friends approach training, it was difficult to retain staff. But now I cannot think of anyone who has quit.”
For more information about the Best Friends Approach to Alzheimer’s Care, go to www.bestfriendsapproach.com/Models.html
For information about how your family or organization can benefit from the Alzheimer’s Association training, see their website. In addition, I’m sure that Mike would be glad to share with you some of his insights and experiences as he has implemented the program at his firm in Westchester, Illinois. Their contact information is:
All-Trust Home Care
10526 West Cermak Road – Suite 114
Westchester, IL 60153
At a recent Alzheimer’s Association event in Chicago, I was surprised to learn that we can make lifestyle choices that can push back against the effects of Alzheimer’s Disease. Dr. David Bennett of Rush Medical Center reported that based on yearly interviews and later autopsy of participants in the 2,400 person Religious Orders Studies, there are people who have the Alzheimer’s Disease cerebral plaques and tangles but do not experience AD dementia, and/or have a delayed rate of decline.
When I was a teen, my maternal grandfather Jerry died from a sudden heart attack at age 60. His death was immediate. Later, when I was a young man, my favorite uncle Jack (Jerry’s son) also died quickly from a heart attack. He was 58. Now that I am the same age, I worry that I will be hit with a sudden heart attack–just… about… now! But things have changed, and these days life usually ends slowly.
Stephen Kiernan’s book, Last Rites: Rescuing the End of Life from the Medical Profession reveals that since 1960, the life expectancy of a North American adult has been lengthened by 31 years. This is a stunning change in human life expectancy within an incredibly short time frame. He notes that even in 1978, the most frequent causes of death among adults were sudden–heart attack, stroke, and workplace accidents. Well, death from sudden causes may be down dramatically, but we have not defeated death–only delayed it. We’ve traded a quick death for the long, downhill trajectory of age-related memory and/or mobility losses.
Terry Schiavo famously died without documents outlining her wishes for or against life-prolonging treatment. The ensuing controversy surrounding the decision to remove Terry from life support was a tragedy, and should serve as a wake-up call to the rest of us. Everyone should create a simple power of attorney (or a living will) appointing a trusted loved one as a health care decision-maker.
However, you should be aware that Health Care Powers of Attorney (HCPOA) and living wills are woefully lacking if you have a diagnosis of long-term illness such as dementia, Alzheimer’s, or Parkinson’s disease. These documents use “triggering language” which creates an authorization to act only when you have been diagnosed as “terminally ill,” which is generally defined as having a condition which will be fatal within six months or less. Doctors do not consider Alzheimer’s or other long-term illnesses to be ‘terminal illnesses’. Patients need a way to make written declarations of their desire (or lack thereof) for antibiotics, tube-feeding, etc. when they are in the late stages of these long-term illnesses and likely afflicted with dementia.
Watching a loved one endure long-term suffering is one of the most terrible experiences there is. I would have loved to have shared more years with my grandfather and uncle–but when I see friends and clients suffer multiple year declines, it makes me wonder if maybe Grandpa Jerry and Uncle Jack were “the lucky ones.”