Currently, approximately 500,000 Americans under the age of 65 have early-onset Alzheimer’s disease or a related dementia. Equally striking is the number of young Americans who are providing care for an afflicted parent: an estimated 250,000 children between the ages of 8 and 18.
“My Name is Lisa” (embedded below) is a short film about a 13 year-old girl dealing with her mother’s Alzheimer’s disease. The poignant piece has won nearly a dozen awards and nominations. Brilliantly acted, it reveals a painful truth about this awful disease which as yet has no cure: even the very young are deeply affected and are often closely involved with their loved one’s care, all the while watching their decline.
At any age, losing a loved one to Alzheimer’s is extremely painful. I am currently grieving the loss of my beloved grandfather, who died on January 21, 2009, from complications of Alzheimer’s. It does not matter how old your loved one is – it’s terrible to lose someone you love. And, with Alzheimer’s disease, you lose your loved one twice: once to the disease, and once to their subsequent death after the disease advances.
But a completely different set of issues and challenges emerge when young children with young parents begin the Alzheimer’s journey. In many cases, the diagnosis means the loss of a job, and that can be absolutely devastating if that person is the primary breadwinner, who is perhaps in the prime of her career. Imagine the ripple effect: loss of health insurance, loss of income to put towards a college savings fund, loss of that person who dreamed of walking his daughter down the aisle…and the losses continue. Imagine having to explain to your fifteen-year-old friends why your Dad keeps asking the same questions over and over, or why he comes into the room with his clothes on backwards. Imagine being a stay-at-home mom and being forced to find a job when your husband loses his – and seeking for adult and child day care services at the same time. Imagine the woman who has her own law firm but cannot remember that the milk goes in the refrigerator, and not the oven.
And it may not always be a parent’s dementia that a child must confront on a daily basis. Many baby boomers find themselves in the “sandwich generation” – having to care for an aging parent while raising their young children, and many choose to either move in with that needy parent or bring them into their own home. This creates a completely new and challenging dynamic for all parties involved, and no one tells that story better than Julie Winokur of Talking Eyes Media, who shares her family’s deeply personal experiences and struggles in “The Sandwich Generation: Parts 1 & 2 – Life with Herbie.”
So many people are not even aware of the fact that you can get Alzheimer’s at any age: it is not “old-timers” disease as some mistakenly say. It is not senility, or hardening of the arteries; it is a disease that is terminal, although it can linger for many years. It is a disease that robs the individual of his essence, his health and vitality, his ability to make decisions: many diseases ravage the body, but Alzheimer’s ravages the mind and the body simultaneously, though not always in the same proportion.
There are a number of excellent resources for young people who are dealing with Alzheimer’s or a related dementia in their home or family…
The Alzheimer’s Association has a page full of downloadable PDFs and links just for kids and teens. The page also links to information about Camp Building Bridges, a special summer camp getaway for children ages 13-16 who have a parent or grandparent with the disease.
For adults who have just received the diagnosis for either their spouse or parent and now must share the news with their children, an excellent article on Care2.com gives sound advice on dealing with this delicate situation:
A number of children’s books have been written on the subject, including “What’s Happening to Grandpa?” by Maria Shriver, or one of my favorites, “Wilfrid Gordon McDonald Partridge” by Mem Fox. Information on Shriver’s book and other similar stories can be found on the Alzheimer’s Association website or on sites like amazon.com.
Alzheimer’s never minds age. It is a disease that demands attention, awareness, and action: if you know someone at any age who is struggling with some type of cognitive impairment, get help. The Alzheimer’s Association’s Helpline is a toll-free number – 1.800.272.3900 - staffed by live representatives 24 hours a day, 7 days a week, 365 days a year. Call to be connected with resources in your area. Call if you are 10 years old and concerned about your Mom. Call if you are 60 years old and concerned about your Dad. Don’t try to go it alone at any age.
America is aging at an unprecedented rate, and as the economy worsens and health care costs rise, hospital emergency departments are often challenged by the complexities of providing care to older adults.
The special needs of seniors may not align with how emergency departments are physically designed, and how care is provided. I was an emergency department nurse for several years, and I know first hand how the fast pace of the center isn’t always designed for seniors.
Older patients may have multiple and complex pre-existing diagnoses, thus making rapid triage and diagnosis (a primary emergency department goal) difficult. They may also be more likely to have some sort of cognitive impairment that makes getting an accurate health history difficult.
In my experience, many older people would simply reply, “Oh, my doctor knows all that,” when they were asked about their health history. That lack of knowledge sometimes delayed care while the doctor had to obtain all aspects of their medical background. These patients are also more likely to be taking multiple prescription drugs that make diagnosis even more difficult due to cognitive and physical side effects.
What’s more is the fact that seniors may have atypical symptoms of an acute illness. In other words, symptoms may be overlooked as “just aging,” and by the time the diagnosis is more obvious, they may be seriously ill.
The physical set up of many emergency departments is not always suited for caring for an older person. There are often long waits in the emergency department for various reasons, and the only place to lie down is a gurney, which is very uncomfortable when used for long periods of time, and can be physically exhausting. Crowded emergency departments are also loud and can be stressful to older patients.
Seniors may also have an increased risk of falling when in the emergency room. For example, stretchers have hard to manage side rails and the bathrooms are often some distance from the treatment room. Since it’s hard to provide one-on-one care in the emergency department, an elderly person may try to get up and go to the bathroom alone by climbing over the guard rails. The typical slippery hard tile floors also make the risk of injury from a fall worse.
While patients in the main ER typically share a room crowded with monitors and equipment, separated from one another only by a flimsy curtain, each patient in the new center has an uncluttered cubicle, with a comfortable chair for a family member or visitor. Rayner said she appreciated the extra privacy. She also was grateful for the mattress — twice as thick as other ER beds and specially designed to prevent skin breakdown that leads to bedsores, which can develop rapidly in elderly patients. There are plenty of blankets — kept toasty in a blanket warmer — and pillows.
Holy Cross consulted with the Erickson School on all aspects of the center and drew on experts in lighting and audiology to make the experience as soothing as possible on aging eyes and ears.
Walls are painted a warm gold, with wooden handrails for safe walking. Rather than slick linoleum, the floor is made of faux wood. Each patient has a television with headset, a large-face clock and overhead lighting controlled by a dimmer switch.
When my mother was ill, we spent a great deal of time in the emergency room, and many of these things would have made such a difference. The goal of addressing the special needs of seniors in the emergency department is to make care less fragmented, increase satisfaction and comfort, reduce future hospital stays and to keep them warm. Because even when you work there, the emergency room can be a cold place.
Retirement planning may not be an easy task, but there are a number of useful tools that can expedite the process. One of these tools is the “break-even age” calculator, which helps prospective retirees determine their magic age for receiving Social Security benefits. For some, it might be best to wait a few years after reaching age 62; for others, getting started on day one of eligibility is the answer.
An article by Sharon O’Brien breaks down the process, which is dependent on some pretty hard-to-determine variables, such as how long you plan to work and whether you’ll live to 80 or 100. Do you want a larger check later on (a result of deferring your benefits), or do you need the income immediately?
O’Brien’s piece links to several handy websites covering topics such as how the break-even point is determined, how you can make a reasonable estimate about your longevity, and how your decision could affect your family, to name a few.
If you’re approaching age 62 and trying to decide when to receive that first SS check, take advantage of the “break-even age” calculator. Consult www.socialsecurity.gov and talk to others who have made the jump. It’s a crucial decision and must be measured carefully, especially given today’s tough times.
Talking to your aging parents or loved ones about finances is often a tough thing to do, but having these issues in order is one of the most important things you can do. Since my mother died a couple of years ago, I always remind people of the importance of planning in case of your illness or death, but there’s still plenty I don’t quite understand.
The term “estate planning” is still kind of nebulous to me and sounds like something people with lot of money and assets have to worry about, but indeed, us regular people need to plan, too. Though I’m not an expert (consider this information rather than legal advice), these are four important financial planning topics to consider:
1. Make a will - A basic will is a written account of who you want to inherit your property and names a guardian for young children if you have any. It also names your executor, the person with authority to make sure that your wishes are carried out. It’s never too early to make a will, but it’s very important to keep it up to date as well.
2. Write your health care directives - Health care directives consist of a living will and a power of attorney for health care, both important documents if you become unable to make medical decisions for yourself. A living will is a written statement that names the type of care you want (or don’t want) if you become incapacitated and a health care power of attorney names someone you trust to make decisions if you can’t.
Make sure your loved ones know where these documents are located and keep copies available since many hospitals routinely ask for them on admission.
3. Name a financial power of attorney – A financial power of attorney names a trusted person to make financial decisions if you are unable to handle your own affairs. In some instances, the court will appoint someone for you if your documents aren’t in place, so it’s wise to properly name the person of your choice.
4. Complete beneficiary forms - make sure all bank and insurance accounts have the beneficiary forms filled out and updated. In some instances, account benefits that are payable upon death may keep the recipient from having the funds go through the probate process.
While it’s never pleasant to plan for your own death, not having a will or other planning documents may mean that the courts distribute your property according to state laws. An estate plan will also put your mind at ease since proper planning is a huge burden off your family during (it was for me when my mother died) an already stressful time.
There are many resources such as Nolo.com to help you gather information about estate planning, but your should always consult your lawyer or other legal adviser to find out what’s right for you.
A recent press release from the office of U.S. Senator Mel Martinez (R-FL) outlines the priorities of the Senate’s Special Committee on Aging for the 111th Session of Congress. Ranking member Senator Martinez and Committee Chairman, Senator Herb Kohl (D-WI), are poised to carefully examine key issues pertaining both to seniors and the Baby Boomer generation; retirement security, long-term care, and housing issues are all on the docket.
Another item of interest for Senator Martinez is reducing Medicare and Medicaid fraud, a huge area of concern specifically in Martinez’ state of Florida. In South Florida alone, such cases account for an estimated billion dollars or more a year. Clearly, this is an area that needs major investigation and reform.
Senator Kohl and Senator Martinez are looking forward to working together on these complex issues while maintaining the Committee’s history of bipartisanship. The duo has already collaborated on a few key pieces of legislation: the Fairness in Nursing Home Arbitration Act and the Silver Alert Act. While there may be a range of approaches to tackling the problems facing our aging population, certainly Democrats and Republicans agree that adequately supporting and caring for our seniors is essential. Many lawmakers have likely wrestled with these agenda topics as they cared for their own aging parents. It is truly an issue that extends well beyond party lines.
I am heartened by the Committee’s agenda, and I sincerely hope that the Members will be able to cross many items off their list. In the end, it’s not just about making things better for today’s seniors; it’s about securing the future of their children, grandchildren and great-grandchildren. And that is a goal we can all support, no matter which way we vote.
Now that we’re two months into the new year, resolutions for sticking to a diet may have gone out the window. But a little help from the free software developed by “Dr. Gourmet” might be the answer to keeping that pesky resolution. Even if you didn’t make one, there’s no time like the present to start eating right for your health.
Dr. Tim Harlan, a practicing, board-certified Internist who is currently the Medical Director of Outpatient Clinics, Associate Chief of General Internal Medicine, and Associate Clinical Professor of Medicine at Tulane University School of Medicine in New Orleans, started his career in the culinary world. At the age of eighteen, he managed his first restaurant. Just a few years later, he opened Le Petit Cafe. While he enjoyed the challenges of the restaurant business, he made the decision to study medicine and eventually become a physician.
During his years of schooling, Dr. Harlan noticed a disconnect: physicians lacked knowledge about the impact of diet on health and would often tell their patients what they could not eat, rather than what they could eat. “Eating well and eating healthy is the same thing,” he says. And from these experiences and observations, Dr. Gourmet emerged.
The Quality Calorie Diet is an online menu planning software that is free to use and designed to work with families, the special needs of seniors, and even figures leftovers into the week’s plan. Besides this fabulous tool, Dr. Gourmet’s website is chock full of information and resources for anyone who desires to eat healthy or learn more about how healthy eating impacts one’s health. Among them, an interesting column on Diet & Aging is worth checking out.
I enjoy healthy eating – I love fruits and vegetables and typically prefer fish over meat — but the challenge in our house is time. When I’m traveling for work or my husband is heading directly from work to grad school, it is easy to slip into the drive thru of the fast food restaurant along the way. I would love to pack healthy food, but I often don’t think about it until I’m in my car, or I think, “how will I keep it refrigerated?” But these excuses are not founded. I just need to make it more of a priority and buy myself a small cooler for road trips…easy fixes for something that will have lasting benefits.
While I did not make a New Year’s resolution to eat better, I am always trying to cut out the bad and bring in more of the good. I do plan to check out Dr. Gourmet’s online menu planning software — if I can plan ahead, I hope that I will be less likely to resort to fast food.
What challenges do you face in eating right? Want to offer some solutions that have helped your family? Share your stories here!
Finance is on everyone’s brain right now, so start with 10 tax tips for seniors, or read the blog post that addresses searching for jobs when you’re over age 55.
Spring is on the way, so learn how to garden your way through the recession.
Check out the iShoe, designed to prevents falls.
Another blog explains why playing hangman and other word games improves your mental and physical health.
Consider volunteering to stay healthy. One post refers to research shown that volunteering can improve strength and cognition, and prevent depression. All this while helping others at the same time!
And the Blog Carnival offers help with senior housing, too, with a post offering tips on how to choose the right one.
Enlighten – Educate – Empower: that is the motto of NABBW, the National Association of Baby Boomer Women. It is “the only association devoted to addressing issues concerning 38 million of the healthiest, wealthiest, and best educated generation of women to ever hit midlife.”
This active online community boasts a plethora of resources for members and visitors to the site. Health information, family and relationship advice, career guidance – this community has it all for the women who are balancing it all. NABBW describes their members accordingly:
“Our members are courageous, dynamic, optimistic, trustworthy individuals who are committed to empowering you to explore your passions and live life to the fullest.”
Offering teleseminars, book reviews, product discounts, and columns on everything from humor to legal issues, this is a one-stop shop for women who are juggling multiple responsibilities and want to connect with others walking in the same shoes. Learning from each other on how to maximize every second of the limited down time that today’s 50+ woman has, seeking advice on how to leverage that next promotion, or just chatting about the challenges of caring for aging parents can all be done on www.nabbw.com.
Even though I’m not a baby boomer woman, I believe that resources like this one are essential to these unique segments of the population, both to share insights and validate the challenges they face.I imagine there is a comparable tool for women my age, and I wonder what topics our discussions will examine as my generation moves into the future. As the daughter of a baby boomer who had children before a “career” and is now, as always, gracefully balancing motherhood, managing a family business, caring for her aging mother and young grandsons, tirelessly serving her community and church, and being a loving and supportive wife… that is a resume in and of itself (and it’s by no means an exhaustive list)!
My experience as a traditional college student who transitioned right into the professional universe – and has yet to bear children – is worlds apart. And yet, no matter how different our experiences as young women have been, I have a deep admiration and inexpressible gratitude for my mother, who raised all of her five daughters to be independent, confident, and successful in whatever endeavor she pursues – an accomplishment that I cannot yet boast, despite the achievements along my career path.
Check out the National Association of Baby Boomer Women and connect with other fabulous, multitasking, multifaceted women like yourself. And, for our male readers, maybe consider a membership for the phenomenal woman in your life?
As the economy worsens, many people are feeling the punch. Government funding for many services is being slashed and many seniors are paying the price.
Senior citizens centers in particular are facing tough times. These centers are vital to many seniors and they depend on them for a connection to the outside world, hot meals, and transportation. But, they are having to find creative ways to continue their service levels with less financial support. Jobs are being cut and activities are being eliminated in order to survive.
Two dollars may not seem like much money, but it’s enough to prevent Frances Podolski from going to her local senior center for a hot meal and some company.
On her fixed income, the Pawtucket resident can’t afford the $2 fee. Without that thrice-weekly visit, Podolski gets depressed. She had to cut back to once or twice a week, until a small grant from a bank allowed the center to temporarily cover her fares.
To many, these activity centers may seem like an “extra,” an easy target to reduce expenses, but they are lifelines for some of our most vulnerable citizens. They not only provide a social outlet, they may be the only source of nutritious food for some and may make the difference when someone needs to see a doctor.
I’m sure that our lawmakers have some tough decisions to make, but I think there’s more than meets the eye when considering funding for these types of services.
On February 9th, at half the age of the average assisted living resident, Gurney will join the family at Paul Spring Retirement Community in Alexandria, Virginia. After nearly 20 years of helping families and elders make these choices via his popular SourceBook and ProAging resources, he says, “I have never experienced the transition first hand as a resident.”
How was he inspired to take on this challenge? According to Gurney, it happened while preparing his children for the first day of school. He realized that there was an authenticity to his words of encouragement because his children know that he’s been through the process before. He wants to lend that same authenticity to the resources he provides for seniors and their families as they face the daunting task of choosing from an array of services and settings. And throughout the experiment, Gurney plans to visit each of these service settings, from the Alzheimer’s unit to the independent living wing.
Gurney understands that since he will not take up permanent residence in any of the facilities he visits, and because he will be quite the novelty at his young age, the experience will not be quite as natural as his soon-to-be elderly neighbors. But his hope is to focus on the emotions that are part of transitioning into a facility – no matter what level of care, no matter how many gift shops or golf courses, no matter how mushy or crisp the green beans served in the dining room (a common complaint during my senior living employment years).
I applaud Steve Gurney for taking on this challenge and look forward to following his journey at www.everyoneisaging.com. I don’t doubt that it will serve as a valuable lesson for adult children who may be insensitive to the range of emotions that such a move can arouse in their parent(s), and it may open their eyes to a number of less obvious pros and cons at each community. Many families make these major decisions under much pressure or on the basis of very little research, planning or exploring. But, as with any major purchase, it always helps to shop around – especially when your loved one’s happiness and comfort is at stake.
