Our adventure into Alzheimer’s disease (AD), touching on other dementias as well, is just about to conclude.
In case you have trouble remembering, we’ve trekked fearlessly through an initial exploration of disease and fears, discovering too how “Alzheimer’s disease” came to be part of the medical world, identified the all-important signifiers of memory problems, clambered up the hillside to a dual rising overview of statements and facts, waded through possible treatment options, fondled possible prevention measures, coming to recognize that disease, prevention and treatment of Alzheimer’s disease remains somewhat mysterious and elusive, yet there’s many roads left to explore.
You may be aware dear Longevity Readers, it was only about 30 years ago that Westerners started questioning whether dementia was part of “normal” aging.
“Adventure is just bad planning.” –Roald Amundsen, Norwegian explorer (b. 7-16-1872; d. 6-18-1928?)
So what’s a person to do?
“I think it’s my adventure, my trip, my journey, and I guess my attitude is, let the chips fall where they may.” –Leonard Nimoy, actor, aka Spock (b. 3-26-1931)
One thing that is established in the Alzheimer’s atmosphere is support. Profound kudos to the Alzheimer’s Association, our National Institute on Aging’s Alzheimer’s disease, education and referral center (ADEAR) and Oregon Hospice. No longer do beleaguered primary caregivers (who, it’s estimated, sacrifice three years of life to every one year given as caregiver) have to face absolutely everything, stumbling through challenges enough to drown a fish. No longer can the person with probable Alzheimer’s, or other dementias, be considered less than human. Emotions remain fairly intact.
“It is only in adventure that some people succeed in knowing themselves—in finding themselves.” –Andre Gide, French novelist (b. 12-22-1869; d. 2-19-1951)
One place to continue in understanding, especially if one enjoys HBO productions, is with “The Alzheimer’s Project” (2009), a movie in four parts. One of the highlights may be Maria Shriver’s statement about how she follows her children’s lead in dealing with her dad’s probable AD because children are joyful, in the moment and engaged. Free online viewing available at the Alzheimer’s Association or reserve through your local library. Also available via Netflix.
When asked “What would you want people to know about AD and the Alzheimer’s Association?” our guide, communications and public policy coordinator Kate Dyer-Seeley said,
“That there are support groups all over the state using trained facilitators. Understand that there is help available. Our 800 help line [800.272.3900] is available 24/7. Technology is advancing so we can better see the brain, which should lend itself to earlier possible detection. Medic alerts are being used for wanderers. It’s important for the person with AD to stay engaged. We work with organizations to place people in volunteer situations.”
“Death is just life’s next big adventure.” –J. K. Rowling, British author (b. 7-31-1965)
Perhaps one of the more surprising delights in this adventure leads to Oregon Hospice. Hospice is the main focus for end-of-life care in the U.S. We do not seem to be a nation of DIY when it comes to natural death and dying scenarios.
Hospice also advocates for all people from voting age on up to take advantage of the benefits offered by Oregon’s Advance Health Care Directive. This directive allows an individual to legally specify exactly what sort of attention they want towards the end of life—lots, never unplug, or whatever; can be revised at any time. Completing such a directive today could be viewed a personal act of kindness. The individual’s preferences are established; loved ones can relax knowing what’s what.
“It is very difficult to generalize. Everyone’s adventure is original.” –Bernard Pivot, French journalist and interviewer (b. 5-5-1935)
Hospice care focuses on comfort for the star person and any people close to them, responding and managing shortness of breath, nausea, pain, constipation, mobility issues and psychological aspects. In Oregon, hospice service is usually provided in a person’s home.
As Deborah Whiting Jaques, CEO, Oregon Hospice, added, “Hospice uses the whole person approach: the whole ill person and family or whoever is close and important to you.” That can include accommodating one’s beloved domestic pets. See Pet Peace of Mind.
And that six-month rumored limit on hospice care? Not necessarily. Again, from Jaques:
“It also happens that people get better on hospice. Having routine visits where you live, getting symptoms like pain, shortness of breath, nausea and other symptoms under control on hospice improves quality of life. People can ‘graduate’ from hospice. If a person is no longer considered terminally ill (they are not expected to die of their disease in the next six months), people may be discharged from hospice. We do see people leave to go on a cruise or to do some travel that they feel able to do—and then come back to hospice if their health begins to again decline.
“So about 50% of Oregonians are on hospice for less than two weeks. Some Oregonians stay on hospice for a year or more.”
When asked what she would like Longevity Readers to know about hospice, Jaques pointed out:
“The Oregon Hospice Association’s mission is to ensure that Oregonians—no matter where they live in our state—have access to high quality hospice and palliative care. We are pleased to answer questions and to provide information and education to anyone who requests it. We are only a phone call away; we are here when you need us.”
That Oregon Hospice number is 503.228.2104 or toll-free 888.229.2104.
Enduring appreciation for contributions to this series goes to:
Roger Batchelor, Doctor of Acupuncture and Oriental Medicine, Licensed Acupuncturist and Associate Professor, National College of Natural Medicine;
Kate Dyer-Seeley, Communications and Public Policy Coordinator, Alzheimer’s Association, Oregon Chapter;
Deborah Whiting Jaques, CEO, Oregon Hospice Association;
Joseph F. Quinn, M.D., Oregon Health Sciences University;
Lindsey Beach, Outreach Assistant, University of Washington, Alzheimer’s Disease Research Center (ADRC), Veterans Affairs Puget Sound Health Care System;
and the countless exacting researchers and their intrepid clinical trial volunteers toiling away for the ways and means to resolve this health dilemma.
“An adventure is only an inconvenience rightly considered. An inconvenience is only an adventure wrongly considered.” –Gilbert K. Chesterton, writer (b. 5-29-1874; d. 6-14-1936)