We've written about hospital infection rates before, indicating that sepsis and pneumonia killed 48,000 patients and added $8.1 billion to heath care costs in 2006 alone. And a current news story about famous 93-year-old Hungarian actress Zsa Zsa Gabor making headlines illustrates this tragic circumstance we see all too often, as she has developed an infection while in the hospital after having surgery on a broken hip.
Medicare data shows that nearly 1 in 5 patients who leave the hospital are re-admitted within the next month and that even more than 75% of these re-admissions are preventable. The top reasons for 30-day hospital re-admissions?
- 78% non-compliance with lifestyle recommendations
- 73% failure to take their medications correctly, given regimen changes
- 68% patient not properly directed to home health services
- 66% lack of follow-through on care/tests from shift to shift
- 57% failure of doctors to encourage home health
And while you can't always control whether or not you or your loved one must remain the hospital, there are things you can do to ensure hospital re-admittance is mitigated with these simple rules of thumb:
- Ensure that you or your loved one is following your medication plan
- Make transportation available so that you or your loved one is able to attend follow-up appointments, therapy, tests, etc.
- Make sure lifestyle changes are being reinforced
- 24/7 contact between physician, caregiver and patient
- Good communication - make sure your needs or the needs of your loved one are being met
By Susan Baida, Co-Founder of http://www.ecarediary.com
My father-in-law, Ken, had Parkinson’s disease since the time my husband, John, and I first met. The way John described how he moved across country to be near him after the Parkinson’s diagnosis and how he cared for him was one of the reasons I fell in love with him. I admired the devotion to his family and the tender bond he shared with Ken.
John was the youngest of three children, the only son and the one living closest to Ken. It made sense that John would be the one to look after his needs, especially since his older sisters lived out of town and had young children of their own to care for.
While Ken’s health declined slowly at the beginning of our relationship, it seemed to take sharp turns, with periodic visits to the emergency room. He would fall and ended up breaking a rib on one occasion, dislocating a shoulder on another. John tended to him while he was bedridden, handled his errands, prepared his meals, and organized his annual Christmas party.
Ken would recover, and there would be periods of normalcy. He was fiercely independent, but after another dangerous episode, where he fell face down on an icy sidewalk and broke his nose, Ken ultimately agreed to a home health aide.
John would always tell me how he wished I knew Ken before the Parkinson’s. While the disease limited his ability to speak and express himself, the Parkinson’s medication made him obsessive compulsive. Research shows that the Parkinson’s drug, Stalevo, has the side effect of Obsessive Compulsive Disorder (OCD). Ken was also in deep denial about his physical limitations and expected John to help him maintain his lifestyle and social routines—attending political meetings, traveling south for the spring season, volunteering for his local community board. It seems as his health worsened, the demands intensified.
It was not just managing his care. John became Ken’s personal assistant as the OCD intensified. Ken would ask John over and over again if a certain task was done yet. On other occasions, we were awakened by 3 a.m. phone calls. Ken would call, disturbed about an upcoming local election or some other non-emergency issue. He didn’t realize the time of night or that we were panicked, thinking he landed in the hospital again.
During this time as John’s wife, I felt frustrated and had many conflicting emotions. Admittedly, it was difficult to see beyond the stress. Being married to someone who was caring for an aging parent, these were some of the emotions I experienced:
- Neglected. John and I spent less time together as a couple. Both of us worked full-time jobs, and it became a regular habit for John to go to Ken’s apartment right after work. I had needs too. I missed having my best friend around to talk to. We also wanted to start a family. Often times, he was so stressed, tired, and depleted that there was little of him left to make love.
- Helpless. There were times John really didn’t know what to do and how to deal with the frustration. While I had cared for my grandmother years ago, the circumstances were very different, and I couldn’t offer the advice he needed. Also, as much as I wanted to help relieve John of some of the care duties, many times Ken just wanted his own son to do things.
- Resentful. Admittedly, there were days I resented Ken for not realizing his limitations and demanding so much from John. I resented his sisters for not pitching in more. I felt it was unfair that the entire burden fell on John. I understood his sisters had children of their own to care for, but this fact seemed to spotlight the fact that we were a childless couple. We craved a normal life so we could have children of our own.
- Guilty. I felt guilty for feeling neglected and resentful. I remembered that this could be the beginning of the end and that John should be left to spend whatever last precious moments he had with his father.
- Feeling it would never end. I wondered how long we could live this way and when it would end. I dreaded the possibility that this could last for years. We both wondered how we could we possibly bring an infant into this situation.
Ken went into rapid decline after contracting aspiration pneumonia in February 2007. He recovered but became weaker. Then his girlfriend of 26 years died. Literally six weeks later, Ken passed away in August 2007.
When he died, we were overcome with deep loss. Ken’s larger-than-life presence left a gaping hole in our family. Yet there was also a sense of relief, for him and for us.
Looking back, I realize the emotions I mentioned above were very normal and that we shouldn’t beat ourselves up for having them. Below are some lessons I learned in hindsight. If you find yourself as the companion of a caregiver, I hope these offer some help.
- Sometimes you may not be the right one to help your companion through this emotional roller coaster ride. Sometimes, I was too close to his situation to lend an unbiased ear. I suggested he see a counselor. It was one of the best things he ever did for his sanity. The other best thing he did was talk to people who had been through similar experiences, particularly with the same disease.
- No matter how hard you try to lend a hand, there may be times when you just can’t. You in-law may prefer their own son or daughter because they may be embarrassed and not want to burden you. Let’s not ignore the fact while you may be very close to them, nothing beats the bond they have with their own child. Remember not to take it personally.
- Remember that your companion may be feeling neglected, alone and overwhelmed. All too often, caregivers neglect their own health and become sick as a result of the stress. Caregivers need to be cared for too. This is your opportunity to offer words of encouragement, perhaps a massage and some time to themselves, too.
- The end, in fact, does come, and then it feels too soon. Just when you feel there’s no end in sight, it can come sooner than you expect. None of us were prepared emotionally when Ken suffered a stroke that led to his death a week later. I remember feeling overwhelmingly grateful that I had a part in the last and most difficult months of his life.
Two weeks after Ken’s passing, John and I learned we were pregnant with our first child. Despite the great sense of loss, this news marked the most wonderful beginning of a new chapter in our marriage. It enabled us to move forward with new hope. It was a miraculous irony. It was as if Ken said, “Okay, kids. You can move on now.” Avery Elizabeth Mills was born 9 months later In April 2008.
By John Mills, Co-Founder of
http://www.ecarediary.com
Being a caregiver is an incredibly stressful experience and a recent study by the MetLife Mature Market Institute has some startling conclusions about its impact. The report examined employees serving as caregivers and found that they are more likely to suffer from health problems like diabetes, high blood pressure and depression than their co-workers.
Some of the key findings in the study include:
- Caregivers have health costs which are 8% higher than people who are not caregivers and cost employers $13.4 billion a year.
- Employees serving as caregivers were more likely to report poor health than their co-workers. For example, 17% of female employees ages 50 and older who were caregivers reported fair or poor health compared to 9% of non-caregivers.
- Employed caregivers find it difficult to take care of their own health care needs and are less likely to get preventive care such as mammograms, annual physicals and preventive health screenings.
- Caregivers were more likely to engage in high risk behavior that hurt their health like smoking or excessive alcohol use.
- Absenteeism amongst caregivers is higher. The study found that 10% of caregivers had missed at least one day of work during the previous two weeks.
- Caregivers report feeling more stress at home than non-caregivers.
The report finds that employers have traditionally focused on providing eldercare assistance programs and have largely ignored the health of the caregiver. The report recommends an integrated solution combining eldercare benefits and wellness programs so that caregiver health receives a higher priority. The specific proposals include:
- Combining time off programs (vacation, sick time, personal days) into one Paid Time Off (PTO) benefit that provides more flexibility.
- Providing telecommuting options to help caregivers juggle work and home demands. These programs are in place for many working parents and have been found to increase productivity and worker loyalty.
- Allowing flexible schedules so people can get their work done and also tend to family needs.
- Offering stress reduction seminars and programs to help workers cope with the difficulties of caring for a sick relative or parent.
- Providing decision support systems to make it easier for caregivers to get information and manage care.
- Awarding financial incentives to people who engage in wellness programs and take better care of themselves.
- Establishing legal and financial assistance programs which can help caregivers deal with issues like Medicare, Medicaid and end of life planning.
This report highlights that caregiving does not occur in isolation and impacts all parts of the caregivers life. The study has many excellent suggestions on how to make it easier for caregivers to balance their jobs and the needs of their loved ones. Despite the tough economy, I hope that employers will review these findings and see that it is in their interests to assist employees who are caring for others.
Click here to learn more about the study and to get a copy of it.
By John Mills
A few weeks ago President Obama signed into law a new healthcare reform bill which will expand health insurance coverage for 32 million people who are currently uninsured. This law will be phased in over the next decade but it offers a lot to help family caregivers both in the short term and the long term.
The benefits of the law fall into two categories – provisions which help the care recipient through Medicare and other public programs and those that help the caregiver through expanded health insurance coverage and better consumer protections. The biggest advantages to care recipients come through better coverage under the Medicare prescription drug program and through expanded health insurance options for pre-Medicare retirees.
Family caregivers will see their biggest benefits come from the fact that health insurance will begin to be de-coupled from employment starting in 2014. Many family caregivers face the difficult choice of whether to stay employed and hire professional caregivers to look after their loved ones or to leave their jobs and care for them full time. This decision is made more difficult by the fact that people who leave their jobs risk losing the health insurance benefits that go with them. By providing new health coverage options and subsidies to help pay for them, family caregivers will have one less thing to worry about when making these difficult choices.
Below is an outline of the key provisions of the healthcare reform law and how they are likely to impact family caregivers.
What Goes Into Effect during 2010 and 2011
The expansion of coverage provided by the new healthcare reform law will not be available until 2014 but there are many portions of the law which will go into effect during 2010 and 2011.
Improvements to Medicare Prescription Drug Coverage - The bill provides a $250 “bonus” to all people in a Medicare Prescription drug program in 2010 that hit the “doughnut hole,” the coverage gap that currently begins at $2,830. It also begins closing the “doughnut hole” in 2011 and completely eliminates it by 2020.
Helping Sandwich Generation Caregivers – The bill helps sandwich generation caregivers, those caring for sick parents or relatives and their own children, by:
Eliminating pre-existing conditions for children thereby ensuring sick children can get insurance coverage.
Permitting children up to age 26 to stay on their parents insurance policies regardless of whether or not they are full-time students. Most insurers currently cover dependents not in school only up to age 19 and those in school up to age 23.
Prohibiting lifetime benefits caps on health insurance.
Temporary Early Retiree Program – The law creates a temporary voluntary reinsurance program for employers to help cover early retirees within 90 days of enactment. This should help pre-Medicare retirees find affordable coverage. The program ends in 2014 when the expanded coverage provisions come online.
Medicare Advantage Changes – The law changes the way that Medicare Advantage plans are paid by bringing payments into line with the costs of the regular Medicare program. These payment changes may impact the benefits provided under these plans so review plans carefully at renewal time.
2011 and Beyond
The bulk of the new benefits and subsidies for health insurance will begin in 2014. The lead time is necessary to accumulate funds to pay for the cost of the new coverage.
Expanded Health Insurance Coverage – Starting in 2014, expanded health insurance options will be available for individuals and small business through Health Insurance Exchanges. These are state-based marketplaces that are modeled on the Massachusetts Health Connector system where individuals and small businesses are able to purchase health insurance. The goal is to provide individuals and small businesses with transparency in benefits and pricing so they can compare health insurance and purchase the coverage that best fits their needs.
Health Insurance Subsidies. In order to help families afford the mandatory insurance premiums, starting in 2014 subsidies will be available on a sliding scale, up to a level of $88,000 per year for a family of four. The amount of the subsidies will also be on a sliding scale, meaning that people with lower incomes will receive larger benefits.
Individual Mandate - Almost all Americans will be required to get insurance coverage or face fines—a system similar to the one that’s already in place in Massachusetts. The fines start small at $95 in 2014, but rise rapidly to $695 in 2016. Low-income individuals are exempted from the mandate but most of them will be eligible for coverage through Medicaid or other subsidies.
Consumer Protections – The law has a number of consumer protections including:
Elimination of pre-existing conditions.
Prohibition on recissions, a procedure where insurance companies retroactively cancel coverage.
Expanded appeals for denial of medical services including the ability to appeal decisions to an external review board.
Long Term Care. The bill includes the CLASS Act, which provides a public, voluntary long term care program that working people can purchase. The program would cover home care, respite care, home modifications, transportation, and assistive technologies.
What’s Next
The lesson of social insurance programs is that they always remain works-in-progress. Social Security and Medicare have been modified and expanded a great deal since they were first enacted.
It is likely that there will be expansion and changes to the new healthcare reform law in the coming years. With the aging of the population and people living longer, some of those changes may include additional assistance for the cost of long term care and family caregivers.
John Mills is founder of www.eCareDiary.com, a website for family caregivers. He was a member of the Clinton Task Force on National Health Reform, and legislative director to U.S. Rep. Eliot Engel, D-N.Y.
We've covered the challenges facing the
sandwich generation before. This is a rapidly growing phenomenon. In fact, 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. A
year!
Adult children are often first in line to provide elder care for their aging parents. And their own children - at the same time. When added to the many responsibilities of their own daily lives, including work and raising their own family, caring for a loved one with declining health can be quite an undertaking.
We've developed an ebook geared toward this growing phenomenon, offering tips on identifying caregiver burnout and seeking respite care. To download "Spread Thin: LifeCare and the Sandwich Generation," visit our Resources page now.
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?
Diagnosing even mild-to-moderate
dementia cases can be difficult. In fact, more than half of such cases are not recognized by physicians, according to a review of the literature at the
Medical College of Wisconsin in Milwaukee. Family members and caregivers, in addition to many physicians, often overlook a decline in cognitive function as well.
As Baby Boomers age, the number of Alzheimer's cases is expected to surge from the already five million cases. Increased awareness and diagnosis will provide optimal care for the aging population. To improve prompt diagnosis, Diana Kerwin, MD, assistant professor of medicine and geriatrics, offers the following recommendations published in an issue of The Journal of Family Practice:
- Avoid age bias when determining the need for cognitive screening
- Screen the vulnerable elderly, or individuals 65 years of age and older who are at high risk of
death or functional decline, at the initial visit and annually after
- Test all patients undergoing cognitive screening for depression as well
For more information, visit our Resources page to download our "Is It Alzheimer's?" eBook.
When families face the challenge of obtaining care for a loved one, or even when family members assume the caregiver role themselves, aside from ensuring the person providing care is qualified, there is nothing more important than compatibility. Especially as the patient's condition progresses and more time must be spent with a caregiver. See how it impacted Marilyn's mother, Carol:
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.