By Susan Baida, Co-founder of
http://www.ecarediary.com/
End of Life planning is very personal, emotional and controversial. When my uncle suffered from a pulmonary embolism that left him in an irreversible coma, my mother was determined to keep him alive in hospice care. He was breathing on his own, but was diagnosed as brain dead. The damage caused by the lack of oxygen flow to his brain was too great. She couldn't bring herself to stop the intravenous feedings which would result in him dying within a few days. So he was kept alive with daily feedings, baths and massages. He lasted this way for 20 months until his death in May 2008.
My uncle did not have advanced directives which are documents such as a living will and healthcare proxy that provide clear direction of a person's wishes should they become incapacitated. He was only 56 years old and didn't think about this type of preparation because he was relatively healthy beforehand.
I think most people are like my uncle and don't think about getting these documents until they are in early stages of a long term disease. My father-in-law is a perfect example.
When my father-in-law was first diagnosed with Parkinson's disease at age 77, it appears he began immediate preparations with his lawyer. After having the documents drafted and signed, he told my husband, John, about them and where they could be found. While John did not want to think about end of life care for his father, he was both surprised and impressed by his father's level of preparation and detail. His healthcare proxy identified John as having power of attorney should he become incapacitated. His living will stated explicitly that he did not wish to be kept alive if the medical diagnosis indicated no hope for his full recovery.
On July 24, 2007, my father-in-law, at age 83, suffered from a stroke that left him in a comatosed state. He was able to breath on his own but needed a feeding tube to get nutrition. The doctors conducted various exams. We learned that he not only suffered from a stroke but that he had advanced cancer which had not previously been diagnosed. The doctors gave the family the diagnosis that his conditions were irreversible and that he would pass away within 6-8 weeks if maintained on life preserving devices.
John and the family had little choice but to honor my father-in-law's wishes as outlined in his advanced directives. One day later, he was taken to a hospice where he was kept "comfortable" with pain medication and warm blankets. Three days later, he passed away peacefully and with dignity surrounded by his family.
Both my uncle's and my father-in-law's deaths were incredibly tragic and painful to witness. However, I think the decision-making process was made easier on John's family because my father-in-law documented his wishes which relieved them from the burden of these difficult end-of-life decisions.
The lesson learned here is to prepare for end-of-life care with advanced directives. I don't think it is ever too early because, with the unpredictability of life, we can become incapacitated at any age. In fact, my husband and I, despite being in our 40s, have completed advanced directives in case something should happen to us and we become incapacitated and unable to execute our wishes.
Visit eCareDiary's Legal Documents page to learn more about advanced directives.
If you go to any of our locations and ask them to share client stories, they will undoubtedly have many, different tales to tell. But there may be a few similarities across the board. One thing that never changes is that those who come to us for home care, whether it's basic respite care and sitter services or highly skilled nursing care and physical therapy, didn't plan for it. People don't typically think about these types of considerations for the future and, even if they do, often times, it's not in much detail.
But one thing that is certain is that, no matter who you are, as soon as you're born, you are aging. And once we or our loved ones get to an age when additional assistance may be needed, it's good to have at least thought through a few things. That's why we've come up with five ways families can start thinking about the future (without having an anxiety attack) by engaging in some self-reflection that can help your decision-making later in life. Go through these considerations yourself and then pass them along to a loved one:
- When you need help, do you prefer to solve problems yourself or do you like working in a team? Do you know know your limits and when to ask for help? Do you enjoy making new friends? Are you a social butterfly, or more of an introvert? Be sure to consider these things, as they may help your family to determine a living arrangement everyone can feel good about down the road.
- First, think about what you value most in the people you work with: work ethic? A team player? Do you like to be left alone? Now, think about what you value most in the people you spend recreational time with: humor? A good cook? Someone who calls often, or not at all? Are they spiritual? One day when you or a loved one needs a caregiver, compatibility will be imperative, so it's important to identify characteristics you like and others not so much.
- What are your strengths and weaknesses? Think both physically and mentally. For example, are you a worrier? Try to establish a fitness routine to manage your stress that you can adapt as you age. Another example: if you're 35 and your eyesight is already poor, consider your needs down the road if it progressively worsens. Or maybe you've got an existing medical condition that you manage - talk to your doctor about ways to manage it as you age.
- Where do your close family and friends reside? Are they far away or right next door, and do you see that changing in the future? How important is it to you that you are within driving distance to those who mean the most? Do you have a career that requires that you or your partner/spouse to remain in a certain geographic area? Be realistic with yourself about what is most important to you.
- And finally, what do you enjoy doing? What gives your life meaning and purpose? Exercise? Cooking? Going to the movies? Gardening? Sports? Fishing? Whatever it is, hold on to these things, and make sure that, no matter where you are in life or whatever your abilities are, you are able to keep them up as long as you can. Even if you need assistance someday, be sure to find a provider that will help you to see this through.
Being prepared doesn't need to be a daunting task, but rather a journey of truly understanding yourself and your loved ones so as to make the best, most educated decisions possible.
And for those who are already facing the challenge of finding homecare for a loved one, we've got you covered. We've developed a free Homecare Prep Kit to provide additional guidance and empower families with helpful, tactical tips. Click here for the free kit!
If you're a parent, your children are your life. And if you're like most parents, you become an expert on anything relating to
childcare, your children's health and wellbeing, whether it's a tiny scrape or
special needs requiring skilled care. Sometimes this can be fairly simple, black and white almost. But what about gray area? When I talk about "gray area,"
autism stands out. Lately, it seems that there is so much published on this condition lately (still mostly speculative), it could make every parent's head spin.
One recent study published in the journal Autism Research suggests that an intricate equation may exist between the age of both the mother and father, as reported by Roni Caryn Rabin in the Times. Older mothers are more likely than younger ones to have a child with autism, and older fathers significantly contribute to the risk when their partners are under 30. Researchers analyzed almost five million births in California during the 1990s, and 12,159 autism cases were diagnosed in those children. This sample was large enough to examine how the risk of autism was affected when one parent was a specific age and the other was the same age or considerably older or younger.
Previous research found that the risk of autism grew with the age of the father. But the new study suggests that when the father was over 40 and the mother under 30, the increased risk was especially pronounced - 59 percent greater than for younger men. And every five-year increase in a mother's age raised her risk of having a child with autism by 18 percent.
Our health is, really, all we have. If you think about it, if you don't have your health, you have inconvenient complications, a reduced quality of life and/or something worse. Whether it's a teenager, a middle-aged adult or the elderly, it is important to "take the reigns" and ensure you are the driver when it comes to your health.
We've written before about the importance of being your own health advocate. One of the best ways of doing this is to educate yourself (they don't say 'Knowledge is power' for nothing, after all). How can you do this? One way is to be prepared. In just five easy steps, you can achieve this in a cinch:
- Do research ahead of time - learn about symptoms you think you may be experiencing, read up about (a) condition(s) you may have.
- Write down a list of things you'd like to address, such as concerns you may have, any major life changes that you've experienced, questions you may have.
- Prior to going to the doctor, be sure to sit down and think about these things so you are able to make the most out of the short time you are there.
- Bring a list of medications (including vitamins and supplements!) you are currently taking and anything else you'd like to address.
- Be sure to bring something to take notes on and/or even a voice recorder (with the permission of your doctor, of course).
We love the idea of making a list. Making a list will not only help you to remember the things you'd like to address, but it will also help you stick to the point and communicate clearly. From young children to seniors, many people are afraid of going to the doctor because it can make them feel vulnerable, but having a list of questions and being educated can help anybody regain some control and feel more confident.
That's why we've come up with a series of checklists to jump-start your journey to health advocacy. From "Questions to Ask About Drug Treatment" to "Questions to Ask About Cholesterol" and more, our Resources serve to empower you to "take the wheel" and never look back. See for yourself.
Maybe you remember the movie "White Christmas" or maybe you don't. There's a song in that movie, the message of which has always rung true for me: "When you're worried and you can't sleep, just count your blessings instead of sheep." Chelsea O'Neil, an insightful blogger, recently touched on this very topic, encouraging people to, especially for elder care providers, pose the question, "What's not wrong," during stressful times.
What a concept indeed! For each of us in our daily lives, and especially for exhausted caregivers and adult children providing elder care. She goes on to say that simply "listing the things that are not wrong can lift the heavy burdens and fill up our depleted souls with the love and kindness that we deserve. It's a simple reminder of what is right within us and around us." When everything around you seems to be crumbling, it's probably because that's what you're focusing on.
And while it may be difficult to see the good through the bad, imagine what good (however little) taking even just a moment to pay homage to what is not wrong could do. It could make a better, more relaxed caregiver, promoting quality elder care, safety and wellbeing for patient and care provider. Just as she asks at the end of her entry, take some time out of your day to heed the following questions: Who fills you up? Who offers you hope and guidance and inspiration? Perhaps now is the time to tell them?
Is this helpful advice? What helps you get through difficult or stressful situations?
This morning on WPR (Wisconsin Public Radio), there was a fascinating discussion about how we can make the most of our remaining days, weeks, or years of life. Joy Cardin spoke with Dr. David Casarett, associate professor of medicine, Division of Geriatric Medicine, and Director of research and education Wissahickon Hospice, University of Pennsylvania, who is the author of "Last Acts: Discovering Possibility and Opportunity at the End of Life."
Dr. Casarett shares stories about the terminally ill patients he works with and how they discovered possibility and opportunity at the end of life. The conversation was primarily focused on patients who had received news that their remaining time on earth was limited; however, as one caller pointed out, in essence, everyone's time on earth is limited. It got me to wondering why we might only consider all of the things we love and desire to do when faced with a terminal diagnosis, why more people don't live their life this way regularly? We get so caught up in our day-to-day lives that we often take for granted that life is short.
The discussion also turned to the issue of the importance of advance directives and making our wishes known while we are still able. Why not do all that we can to "go out" on our own terms? This can often be difficult to think about, but very important. Just as we mentioned in a previous entry, we all want to remain in control and continue having our independence as we age; making our wishes known in advance is a great means of ensuring control, even when we may not have much (physically/mentally) when the time comes.
And I'm not just talking about the elderly or those who are terminally ill. We should all take the time to evaluate our values, our priorities, our passions and our purposes in life and take every possible step we can to ensure that these things are woven throughout every facet of our lives, from beginning to end. What do you think?
We blog about the "sandwich generation" phenomenon and the growing prevalence of adult children, grandchildren, nieces and nephews taking on the responsibility of caring for their aging loved ones. And as the first group of baby boomers turns 65 in 2011, this phenomenon will undoubtedly continue to grow at staggering rates. So much, in fact, that many speculate that the country is not prepared for the increased need for accessible living and quality care.
So often, you hear about patient-centered care, but the inexperience of many family caregivers coupled with the challenges they face (and will continue to face) adds a new dynamic to the traditional doctor-patient model of care. Dr. Arthur Kleinman, a professor of medical anthropology and psychiatry at Harvard Medical School and now a family caregiver himself, describes this very thing in a recent NY Times column: "We've had outstanding diagnoses and very careful attention to defining the problem. But once the problem is defined and the limited pharmacological interventions prescribed, there has been neither interest nor knowledge about the rest of the aftercare, even in the most simple parts like finding a home health aide or getting a needs assessment by a social worker."
This month, the American College of Physicians, the country's leading professional organization of internal medicine physicians, issued its first position paper on working with caregivers. Endorsed by almost a dozen other professional medical organizations, the paper, published in The Journal of General Internal Medicine, highlights the challenges that can arise from the complex interaction among patient, doctor and caregiver and offers guidelines for providing the best care. Long overdue, this new three dimensional view of caregiving poses to extend a helping hand to caregivers while bringing patient care full circle.
Are you a caregiver, whether by trade or for a family member? What is your take on this new doctor-patient-caregiver care model? Weigh in now!
For the many adult children, nieces, nephews and grandchildren who so often take on the role of caregiver for an elderly loved one, it can be challenging, especially without support. But even more difficult is striking a balance between the monotony of daily routine and keeping life exciting and stimulating. Let's face it: no matter how young or old you are, life is sweeter when special events replace tedious routine.
And if excitement isn't enough of a reason to keep each day as engaging as possible, new studies show that sitting around too much can be deadly. According to a recent AARP bulletin, scientists are increasingly warning that sitting for prolonged periods - even if you also exercise regularly - could be bad for your health. And it doesn't matter where the sitting takes place - at the office, at school, in the car or before a computer or TV - just the overall number of hours it occurs. The bulletin goes on to say that research is preliminary, but several studies suggest people who spend most of their days sitting are more likely to be fat, have a heart attack or even die. And even people who get a lot of exercise but are sitting for long periods of time may be better off spreading out their activity throughout the day.
So how do you and senior loved ones get there? Pinpoint things you enjoy, whether it's fishing, shopping, cleaning and organizing or bird watching, and brainstorm ways to keep active doing them. Even if you do a little activity at a time throughout the day, research shows that it is more beneficial than if you didn't at all.
More than 50 million Americans provide care for a chronically ill, disabled or aged family member or friend during any given year, and that number is growing, according to the National Family Caregivers Association. It is not uncommon for adult children and other family members to offer help when an aging loved one needs assistance, but what are the financial implications of this? A blog article posted by Dale at Transition Aging Parents highlighted the efforts of a new Key Bank campaign to raise awareness (in adult children) of the need to balance the financial situation of an aging parent without jeopardizing their own. The article stresses the need to plan ahead - something many often overlook, or simply wish not to address.
Planning is important as we age, in all aspects of life. We all want to remain in control and continue having our independence as we age, but being realistic about what the future may hold, and even documenting you or your loved one's wishes in writing, can be important for aging adults to have some control over their future even when they can no longer speak for themselves. In accordance with this sentiment, the campaign targets five things
- Having a frank discussion about finances with your parent (so there's no hard feeling or suspicion at a later date)
- Getting organized
- Preparing for market ups and downs
- Making sure you understand and know where to find the paperwork your parents have (insurance policies, long term care insurance, wills)
- Knowing about sources of financial help (such as reverse mortgages or unclaimed veteran's)
And offers the following tips
- Be a signer on your parent's checking account and monitor their accounts online. (You'll be able to spot scams, fraud and first signs of dementia if you do this.) If you're not a signer on the accounts and your parent becomes incapacitated, you will need a court order to gain access.
- Be sure you understand what the long term care insurance covers and what it does not.
- Consider seeking out the services of an attorney who specializes in Eldercare law. They can help create/manage your parent's trust in their best interest. Also, know that if your parent moves from one state to another, you should have legal documents reviewed to ensure they meet current state laws.
Doing good deeds, family and friends, and laughing. Just a few of the things in life that make me happy. Is the laundry list of things that make us happy the true keys to happiness, or is it something deeper? According to Nick Temple of the Global Ideas Bank, compiler of "500 Ways to Change the World," psychologist Dan Baker has identified six key tools that are essential to true happiness:
- "Appreciation: the outward-bound kind of love that gives everything and asks for nothing, making it pure and strong." Think about the last time you forgot your wallet or purse somewhere and how happy you are when a friend or stranger returned it to you-now that's appreciation!
- "Choice: Anyone can choose the course of their lives, but only happy people do it." When you make a choice, you take control over a situation, you assert yourself, you express yourself, all of which can be both liberating and exhilarating.
- "Personal power: A proactive force that gives individuals the power over their feelings and their fate. It is made up of two constituent parts: taking action and taking responsibility." Much like when you make a choice, you are knowingly taking the wheel and driving.
- "Leading with your strengths: Focusing on strengths, rather than focusing on weaknesses, enables a swifter resolving of situations." It has been proven that people respond better to positive reinforcement. And the law of attraction essentially says that the more you focus on something, the more of that something you get-if it's strength, you get strength; if it's positivity, you get positivity.
- "The power of language: Language can be used in a healthy or horrible way, and words have immense power to constrain or liberate." Be honest and open when you speak to others, and be sure to think before you speak whenever possible.
- "Multidimensional living: Putting energy into the three main components of life (relationships, health and purpose) is the final key." Balance is the key to just about everything!
When evaluating your life, think about the things that make you happy. Where do they fit within these categories? Are there areas for improvement? Perhaps these categories can serve as a guide to set your goals and prioritize, or serve as a catalyst to evaluate your life in general.