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!
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.
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!
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.
One study by UCLA researcher Teresa E. Seeman, PhD, and colleagues, as reported on by WebMD, indicates a new trend among aging Baby Boomers: disability. The findings indicated that one in five 60-somethings need help with basic daily activities -- up from 13% just a decade ago. Various disabilities are up 40% to 70% in 60- to 69-year-olds.
"Our results have significant and sobering implications," Seeman and colleagues say. "To the extent that persons currently aged 60 to 69 years are harbingers of likely disability trends for the massive baby-boomer generation, the health care and assistance needs of disabled older Americans could, in the not so distant future, impose heavy burdens on families and society."
The article went on to say that, compared with those surveyed in 1988-1994, 60-somethings surveyed in 1999-2004 were:
- 70% more likely to have difficulty walking from room to room, getting in and out of bed, and/or eating and dressing.
- 70% more likely to have difficulty doing chores, preparing meals, and/or managing money
- 50% more likely to have difficulty walking a quarter mile and/or walking up 10 steps without rest
- 40% more likely to have difficulty stooping, crouching, or kneeling; lifting or carrying 10 pounds; and/or standing from an armless chair.
According to the National Family Caregivers Association, 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. Adult children are often first in line to care for their aging parents. Many of those adult children are still raising children of their own, making an entire "Sandwich Generation" of family caregivers. But given these new findings, is the sandwich generation already too stretched? What do you think?
I can't believe it (and I say that every year around this time): Halloween has come and gone and Thanksgiving is already upon us, spiraling into the holiday season. People do a lot of traveling this time of year to visit family, friends and loved ones, which, in and of itself, can be difficult for very young children, seniors and people with disabilities. It can be further frustrating for all parties involved if the destination is not accessible, or "visit-able." According to
Inside Elder Care, visit-ability is a trend that has been gaining more and more support since the mid-1980s. This "movement" seeks to insure that all homes are at least partially accessible to people with mobility impairments.
There are some modifications in every area of your home, inside and out, that can be made to help visitors move about with greater ease. Many of these changes can be temporary or permanent, and can be low cost as well.
Outside, make sure that any areas that people will be walking on or using assistive mobility devices such as a walker, cane, wheelchair or scooter are clear of ice and snow. It's also recommended to have at least one zero-step entry into your home, so those that have physical limitations and cannot navigate stairs can enter your home easily.
Inside your home, you can make some simple alterations throughout most of the living areas to decrease injuries and frustrations, and also create greater ease of navigating throughout the home. Some free and easy changes include removing area rugs and floor mats, and securing thresholds and dividers between hard-surface and soft-surface floors to lower the risk of tripping and falling, and moving any pieces of furniture out of high-traffic areas such as family rooms/living rooms and hallways to provide easier movement and reduce falling risks for those using assistive mobility devices. Some low cost additions to make to your home include purchasing and installing temporary risers to your tables to allow enough leg room and knee clearance for those in wheelchairs; toilet seat lifts, shower benches and railings for the bathroom; and renting or purchasing ramps for step-entry doorways.
Read more about
visitability for seniors and the disabled.
According to the National Family Caregivers Association, more than 50 million people, provide care for a chronically ill, disabled or aged family member or friend during any given year. Adult children are often in the driver's seat to take on the responsibility of caring for their aging parents.
Family caregivers who provide care 36 or more hours weekly are more likely than non-caregivers to experience symptoms of depression or anxiety. For spouses the rate is six times higher; for those caring for a parent the rate is twice as high. When added to responsibilities of their own daily lives, juggling work and their own family, caring for a parent with declining health can be quite an undertaking.
Paul Wellander, BrightStar DFW homecare provider in Grapevine, TX, recently brought this issue to the forefront in as part of a week-long segment titled, "Aging in America." Click here to hear one family's story of coping with caring for an aging parent.
My grandpa Jack (or "Jacko" as we called him) was a rebel. He was a whippersnapper as a child and went on to be kicked out of not one, but two high schools as a teen. I guess you could say that this carried over into his adult years and as he aged, but he rebelled in a different way. Jacko never went to the doctor. I think that a big part of the reason why he never went was fear; he was afraid of what could be. Jacko was happy with not knowing, but is this how things should be? Not if you can help it!
Now, answer a few questions: what kind of relationship do you have with your doctor? Are you comfortable asking questions to clarify something if you don't understand it? Do you feel as though you are being heard and your needs are being met? Everybody - especially aging seniors, like Jacko - should be their own health advocate, and you should truly view the relationship you have with your doctor this way. Developing a collaborative partnership with your doctor can be crucial to your health and wellbeing. Here are some helpful hints to get you started:
Be prepared. 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, medications you are currently taking and anything else you'd like to address. 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. 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.
Take notes. Along with your list of items to address, bring a pad of paper or a tape recorder (with your doctor's permission) to log what is said during your appointment. This will help you to share the details of what was said in case you have a hard time remembering afterwards or you are not comfortable with restating medical terminology that was discussed.
Keep a health journal. Buy a notebook to jot down the aforementioned items in. Keep it at your bedside and update it each time you get sick or have a new symptom, or just to keep track of how you're feeling each day. And, of course, bring your notebook to appointments and take notes. These helpful insights can provide you and your doctor with context that may help down the road.
Ask questions and give feedback. Again, you are your own advocate and it is your right to play an active role when you visit your doctor. If you need something to be clarified, don't ever hesitate to share any questions you may have with your doctor. In fact, write down all of the questions you have in your notebook to ask at the end of the appointment. You should also feel free to give feedback - let your doctor know if he or she is being too medical, or if they are not explaining things in enough detail. If you do not feel comfortable asking your doctor questions or giving feedback, it may be a sign that you need a new doctor with whom you will feel comfortable because two-way communication is imperative in a doctor-patient relationship.
Whether you adopt all or just a few of these points, the take-away from all of this is to just go. This is so important that we're dedicating an entire series of entries geared toward helping you to assess your relationship with your doctor and empowering you to take the next steps to being an advocate for yourself in the doctor's office. Whether it is finding a new doctor or preparing questions to ask at your next appointment, there are some small steps you can take to promote a solid doctor-patient relationship. Do you have a family member or friend like Jacko? What would you recommend to motivate them to visit their doctor regularly? Share your ideas now!