In Home Caregiver

Caregivers and their Medicare?
Yes, you read it right. I am posting this one about what caregivers should know about their Medicare. But...
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September 12, 2013
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In the Caregiver's Words

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With a lot of talk these days about children moving back in with parents and intergenerational homes, it is easy to overlook the huge growth in “distance caregiving” in America. In 1997 the number of distance caregivers - family who are caring for an older parent in another location – was about 7 million; it has since doubled to an estimated 14 million today. I came across a study on distance caregiving by a nurse oncologist, Polly Mazanec, that addressed a lot of the issues I see as a geriatric care manager with my own clients.

We often get a call from a son or daughter (and yes, it is more often a daughter), because they are concerned about some life issue of an older parent who still resides here where we work. It can be a change for the worse in a chronic medical condition, a sense that the parent is “confused,” a progression of a cancer, a fall or a home security concern. But almost without exception, the distance caregiver clearly sounds stressed. When I talk about “distance,” there is no magical number of miles to be distant, if it is perceived as distance then that becomes stressful. Distance can be measured in miles, but if the caregiver has a strenuous workload or is the sole wage earner in this recession or has family obligations in their own home, the ability to make frequent trips to help mom or dad is limited.

Caring for an older parent from distance is stressful, because there can be a long interval between visits or a most recent visit has shown visible changes in mom or dad or there has been a change in treatment regimen that the distance caregiver does not understand. And the medical change actually can be more stressful for the distance caregiver than for the patient. The stress comes as much from anxiety and guilt than it does from concern for the elder’s well-being, a stress owing to having “not been there to help."

Based on our experience, I offer some suggestions for long distance caregivers:
1. Help with the things that can be done at distance - arrange for meals to be delivered, housekeeping details to be attended, a checkbook balanced, in-home help to be present, or a neighbor to look-in at intervals.
2. Appreciate that being an adult yourself may not release you from the way you related to your parents back when you were a child at home - give yourself permission to help as you can without feeling guilt about not being there.
3. Enlist the help of a local advocate - this can be a nurse clinician at the doctor’s office or a geriatric care manager, but it is helpful to have someone to monitor and manage and then inform you.
4. Acknowledge that hands-on is not the only kind of care; distance caregiving can be a very important part of the village it takes to care for an elder or other person with special needs.
Charlotte Bishop is a Geriatric Care Manager and founder of Creative Case Management, certified professionals who are geriatric advocates, resources, counselors and friends to older adults and their families throughout metropolitan Chicago. Please email your questions to Charlotte Bishop.
Earlier this month, Kaiser Health News published an update on what the Centers for Medicare & Medicaid Services (CMS) is doing to reimburse for more services that may not be strictly medical…but offer a health benefit. With Kaiser’s permission we are releasing their summary of these changes here. Air conditioners for people with asthma, healthy groceries, rides to medical appointments and home-delivered meals may be among the new benefits added to Medicare Advantage coverage when new federal rules take effect next year. Earlier this month CMS expanded how it defines the “primarily health-related” benefits that insurers are allowed to include in their Medicare Advantage policies. And insurers would include these extras on top of providing the benefits traditional Medicare offers. “Medicare Advantage beneficiaries will have more supplemental benefits making it easier for them to lead healthier, more independent lives,” said CMS Administrator Seema Verma. Of the 61 million people enrolled in Medicare last year, 20 million have opted for Medicare Advantage, a privately run alternative to the traditional government program. Advantage plans limit members to a network of providers. Similar restrictions may apply to the new benefits. Many Medicare Advantage plans already offer some health benefits not covered by traditional Medicare, such as eyeglasses, hearing aids, dental care and gym memberships. But the new rules, which the industry sought, will expand that significantly to items and services that may not be directly considered medical treatment. CMS said the insurers will be permitted to provide care and devices that prevent or treat illness or injuries, compensate for physical impairments, address the psychological effects of illness or injuries, or reduce emergency medical care. Although insurers are still in the early stages of designing their 2019 policies, some companies have ideas about what they might include. In addition to transportation to doctors’ offices or better food options, some health insurance experts said additional benefits could include simple modifications in beneficiaries’ homes, such as installing grab bars in the bathroom, or aides to help with daily activities, including dressing, eating and other personal care needs. “This will allow us to build off the existing benefits that we already have in place that are focused more on prevention of avoidable injuries or exacerbation of existing health conditions,” said Alicia Kelley, director of Medicare sales for Capital District Physicians’ Health Plan, a nonprofit serving 43,000 members in 24 upstate New York counties. Even though a physician’s order or prescription is not necessary, the new benefits must be “medically appropriate” and recommended by a licensed health care provider, according to the new rules. Many beneficiaries have been attracted to Medicare Advantage because of its extra benefits and the limit on out-of-pocket expenses. However, CMS also cautioned that new supplemental benefits should not be items provided as an inducement to enroll. The new rules “set the stage to continue to innovate and provide choice,” said Cathryn Donaldson, of America’s Health Insurance Plans, a trade group. “CMS is catching up with the rest of the world in terms of its understanding of how we keep people healthy and well and living longer and independently, and those are all positive steps,” said Ceci Connolly, chief executive officer of the Alliance of Community Health Plans, which represents nonprofit health insurance plans. Some offer non-emergency medical transportation, low-cost hearing aids, a mobile dental clinic and a “grocery on wheels,” to make shopping more convenient, she said. Charlotte Bishop is an Aging Life Care Advisor, Geriatric Care Manager and founder of Creative Care Management, certified professionals who are geriatric advocates, resources, counselors and friends to older adults and their families in metropolitan Chicago. She also is the co-author of How Do I Know You? A Caregiver’s Lifesaver for Dealing with Dementia.
In a recent post, I shared what Allyn Rawling said about what to consider when mom or dad are moving out of the family home. Ms. Rawling addressed some of these factors, especially the benefits that assisted living can provide – eliminating possible isolation, ensuring safety, among others. Here are some other aspects to look for when you next visit your loved one.

First, you may notice and overall unraveling of your loved one’s quality of life. For instance, the home itself isn’t well kept and there are safety hazards that have gone unnoticed. You may find that your loved one isn’t taking care of themselves as well as they should, especially when it comes to grooming, bathing, and feeding themselves. Bills might be going unpaid. It is important to note however, that some of these factors may be fixable with some caregiving consultation and changes around the house. However, moving out of the home may be an option that your parents might have to consider.

Second, the family home may simply no longer be safe for your loved one. If the stairs are too steep or if help is not readily available when there is a need, a safer residence may be in order. If mom or dad show bruises, but do not admit that they have fallen - perhaps more than once - it may be time to talk to your parents about independent living. Remember to underscore the "independent" in the living option, because they may have images of the last generation's "old folk's home" or some other outdated stereotype.

Third, it is a tough topic to bring to your parents as they’ll want to keep their independence as long as possible, again a reason to emphasize the "independent" in independent living. Be patient. Start the conversation well before an immediate decision is required. Also, help to make it their decision, their process and their terms. If your older parent does not own the decision, guess who will own it, and that will be a costly bit of ownership for you as a caregiver.

Charlotte Bishop is a Geriatric Care Manager and founder of Creative Case Management, certified professionals who are geriatric advocates, resources, counselors and friends to older adults and their families in metropolitan Chicago. Please email your questions to ccbishop@creativecasemanagement.com.
I have again asked our vice president for senior services, Steve Steiber, Ph.D. to share a guest posting about some new research which studies what predicts cognitive decline. Steve has more than two decades experience in pharmaceutical and medical device consulting prior to joining CCM about ten years ago. He reports: "Keep you r friends close, but your enemies even closer," is advice that has most often been attributed to Sun Tzu, a Chinese military strategist of 6th and 5th century China. Maybe this is good advice for military matters, but researchers are finding increasing evidence that it is poor advice for mental matters. In fact having stressful friends as early as middle age is a statistical predictor of cognitive decline in later years. Scientists at University College London report that negative interactions with others - which they characterize as "unpleasant social exchanges" - lead to declines in cognitive test scores over the ten-year period of their study. They actually measured the cognitive profiles of nearly 6,000 British civil servants over this period, and those with more negative social relationships reported even more rapid decline in their mental capabilities. Those in the top third of "negative associations" aged cognitively as much as a year more than those in the bottom third. The differences, while small, were statistically significant. In parallel research recently reported by physicians at the Washington University School of Medicine in St. Louis, it is not just the "crabbiness" of others that can precipitate cognitive decline. These physicians were looking for leading indicators of Alzheimer's Disease in more than 2400 patients in 34 Alzheimer's Disease centers between 2005 and 2013. They tested patients for their functional capacity, general depression, a host of other neuropsychiatric conditions and dementia. The patients all started out "cognitively normal" on all these scales at the outset of the study. They found that irritability, depression and disturbances in nighttime sleep patterns preceded mental decline in these patients. But it got even more granular than that. It was like following a road map with first, irritability, depression, and nighttime behavioral changes; these were followed by anxiety, appetite changes, agitation, and apathy. Last came elation and motor disturbances which were followed by hallucinations, delusions, and disinihibition. Rather startling. What do we take away from these findings? First, we should not make any sweeping generalizations without more research to corroborate what these researchers have found. But at the very least, it suggests that if you have a loved one who is middle age or older, be aware of the people whose company they keep. It is not mentally healthy to immerse oneself or your loved one in the company of irritating people. (Maybe that is good advice for us all, regardless.) The second research suggests that we perhaps can seek professional help earlier with symptoms that may precede forgetfulness or other cognitive decline. The list is here. Take seriously the signs of melancholy or poor sleep patterns or changes in mood or appetite. And if a loved one shows consistent signs of irritability, it may be more than their impatience. At the most general, think of these bodies of research to be not unlike the research we have always seen about diet and exercise along with not smoking. The research here, however, is not about physical health; it is mental health we can safeguard with better vigilance. Charlotte Bishop is a Geriatric Care Manager and founder of Creative Care Management, certified professionals who are geriatric advocates, resources, counselors and friends to older adults and their families in metropolitan Chicago. Please email your questions to info@creativecaremanagement.com.

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