The May issue of the newsletter from Dutton & Casey contains helpful information on estate planning, probate, and elder law related matters. Please take a few minutes to review this resource.

Helping your parents stay out of the nursing home

Aging parents and their children sometimes disagree over the issues of safety versus independent living. Here are steps you can take to make your parents’ home safer.

By Karen Ravn, Special to the Los Angeles Times

February 6, 2012

Your parents say they couldn’t bear to lose their independence. Their hearts are set on staying in their own home for the rest of their days. And you understand. It’s what you’d like for them too. But they’re not as young as they used to be. Not as strong and on top of things. And you can’t help wondering if their plan is really wise, or even feasible. So you worry.

The question of what’s best for mom and/or dad is one that bedevils many children with aging parents, says Dr. David Reuben, chief of the geriatrics division in UCLA’s Department of Medicine. “One of the things older people want most is to stay in their own homes. But there’s always a tension between autonomy and safety. Children may want to err on the side of safety, but parents may want to err on the side of autonomy.”

Of course, the time may come when physical or cognitive limitations make independent living impossible. But until then, there are steps you can take to make your parents’ home safer, their lives in it easier — and your concerns about them a little less daunting.

To make a home more elder-friendly, a safety assessment is a good place to start, says Myra Hyatt, a specialist clinical social worker at the Landon Center on Aging at the University of Kansas Medical Center in Kansas City. That means having an occupational therapist inspect your parents’ home for safety concerns and suggest ways to deal with them. These are some of the main issues that often come up in such assessments.

Stuff happens, so be prepared. If they have a personal emergency response system, your parents can call for help, 24/7, with only a push of a button. Newer systems can detect when a person has fallen down, so even if they’re too injured to push the button, the system will automatically alert an operator, Hyatt says.

Being prepared can prevent stuff from happening. An emergency response system is a very fine thing, but in the long run it’s more important to create an environment where such a system is needed as rarely as possible, says Linda Ercoli, director of geriatric psychology at UCLA. “If you fall and break your hip, you might be able to push a button and get help, but the fact remains that you’ll have broken your hip.”

Indeed, your parents’ home may be booby-trapped with all sorts of falls waiting to happen — including slippery showers or tubs (add grab bars), slide-prone throw rugs (get rid of them or tape them down) and fate-tempting steps and stairs (consider installing ramps or even chairlifts). Poor lighting is another open invitation for your parents to take a tumble or bang their heads or stub their toes. With brighter, better-positioned lights, you’ll be sure they can see what they’re doing and where they’re going.

Be an alarmist. Smoke and carbon monoxide alarms should be standard in every home. But your parents might also benefit from other, more specialized alarms, Hyatt says — for example, an alarm that goes off if a pot has been left unattended on the stove for too long, or one that reminds them to take their medications (and alerts someone else if they don’t).

Life-simplifying devices. Clothing that fastens with Velcro — instead of buttons or zippers — can make a welcome difference for fingers stiff with arthritis. And for backs no longer terribly keen on bending, an extra-long shoehorn can be a real blessing. Speaking of recalcitrant backs, a handy-dandy reacher/grabber allows for bend-free retrieval of items that fall on the floor as well as stretch-free retrieval of objects from high shelves.

Staying connected. Isolation can be a problem for seniors, especially as they become less mobile. If their hearing has also gone downhill, talking on the phone may be difficult. But a phone with amplified speakers can help, Hyatt says. And if their eyes aren’t so sharp anymore, big buttons can help too. So can email with big fonts.

Senior centers and adult day care are other good options for those who can get to them — as are pets, at least in the right circumstances. “They make great companions,” Reuben says. “People relate to them exceptionally well.” On the other hand, he warns, “if your parents can’t walk very well themselves, they obviously won’t be able to walk a dog. And pets can get underfoot.” Tripping over a leg-rubbing cat or toy-chasing dog can cause falls. Think goldfish?

Food. Nutrition can be problematic for seniors, Ercoli cautions. “Will they eat right — or even at all?” Perhaps your parents are eligible for Meals on Wheels services. Also, senior centers often offer no- or low-cost lunches. You might even hire someone to shop for groceries and prepare meals.

Professional services. Staying in their own home can be a lot easier for your parents if they don’t need to worry about keeping it clean or keeping the yard looking good. You can hire professionals to do those and almost any other chores your parents might no longer feel up to.

Taking care of business. Maybe it’s time for you to take charge of your parents’ finances — pay their bills, balance their checkbook. And it’s important for them to consult an elder law specialist, Hyatt says. How they handle their assets can have big-bucks repercussions down the road, affecting their eligibility for programs like Medicaid, to name just one example.

Take care of yourself too. Worrying about and caring for your parents can wear you down, Hyatt says. “You can become isolated yourself and find yourself thinking, ‘I want my life back.’ Part of the challenge is the guilt you feel.” That’s where caregiver support groups come in, she says. You can be open and frank there, even about the feelings you’re least proud of. “Everyone there will get it,” she says. “They won’t think you’re a monster.”

Resources. Countless agencies and organizations are dedicated to providing invaluable — but often free or low-cost — senior services. Information about many of these is available from your local Area Agency on Aging, which in Los Angeles County can be reached at (800) 510-2020 or css.lacounty.gov (click on the “Programs” tab). There you can find help with many of these issues, as well as others. Also, for a thorough “Housing Safety Checklist for Older People,” visit and click on the “Housing” tab.

“Find help,” Hyatt says, “because it’s out there. And it can mean you stay the course and keep your parents at home as long as you can.”

health@latimes.com

……………………………………………………………………………

For information on how the law firm of Dutton & Casey can assist you assist you, or someone who you care about, plan for today…and tommorrow, please click here.

February Issue of Dutton & Casey’s Newsletter

 The February issue of the newsletter contains information on many topics. Please take a few minutes to review this resource.

 click here to read the February issue.

click here to learn more about the law firm of Dutton & Casey

Medicaid, Spousal Impoverishment and Same-Sex Couples

SAGE, the country’s largest and oldest organization dedicated to improving the lives of lesbian, gay, bisexual and transgender (LGBT) older adults has published a booklet on  Medicaid, Spousal Impoverishment and Same-Sex Couples.

Click here to go to the SAGE website for the guide and other helpful information.

One of the Practice Areas of  the law firm of Dutton & Casey is Medicaid planning. For information on we can assist you, or someone who you love, please click here.

Lewey Body Dementia Association Survey

The Lewey Body Dementia Association (LBDA) is conducting a survey to assess if there are differences in how grief is experienced by caregivers for individuals with Lewy bodies, Alzheimer’s disease, Parkinson’s disease with and without dementia, and frontotemporal degeneration.  The survey will also assess the well-being and quality of life for caregivers of individuals diagnosed with the neurodegenerative diseases. Internet access is required to participate in the study, and LBDA needs 500 caregivers who are currently providing care for each different disease that is being studied. 

http://www.lbda.org/go/caregiversurvey

Medicare D

Just a reminder, Medicare beneficiaries have until December 7 to enroll in, or change, Medicare D coverage.

For Resources on Medicare D, please go to www.medicare.gov; www.medicareinteractive.org; www.insurance.illinois.gov/ship

Medicaid is Changing

In Illinois, Medicaid is changing because the Deficit Reduction Act is being implemented.

Click here to read more.

Internet Scams

The Family Caregiver Toolbox

Don’t Become the Victim of a Scammer

If you have a telephone or an e-mail address, you have no doubt been the target of a scammer. No one is immune from these criminals, who are using more sophisticated techniques every day. Some e-mail scammers have even learned how to make their correspondence appear as if it’s coming from a trusted government source, such as the IRS. The victims of Internet crime alone lose millions of dollars each year.

You can protect yourself and your loved ones. A variety of reputable agencies and organizations have compiled resources and tips that are a must-read for anyone who uses a telephone or computer.

A new toolkit from the National Council on Aging (NCOA), produced in partnership with the Women’s Institute for a Secure Retirement (WISER), and the Bank of America Charitable Foundation — “Savvy Saving Seniors: Steps to Avoiding Scams” — is helping to educate older adults and their caregivers about how to protect themselves from financial abuse and scams. The toolkit includes a list of signs for caregivers to look for when concerned about their loved ones. Go to www.ncoa.org/assets/files/pdf/Steps-to-Avoiding-Scam-Handbook-10-12-11.pdf.

The Internet Crime Complaint Center, a partnership between the Federal Bureau of Investigation (FBI) and the National White Collar Crime Center, provides helpful “Internet Crime Prevention Tips.” Go to http://www.ic3.gov/preventiontips.aspx#item-16. View more tips at www.fbi.gov/scams-safety/fraud/internet_fraud.

for more information on resources for family caregivers, go to thefamilycaregiver.org

Family Caregiving and Ambiguous Loss

Caregiving and Ambiguous Loss

Introduction Caregiving for a loved one can cause stress in many ways. To manage the stress—which we know can be dangerous to a caregiver’s health—we must first know what the problem is. Surprisingly, many caregivers of individuals with memory disorders or dementia report that the main problem is not the illness itself, but the ambiguity and uncertainty it causes. It’s a difficult challenge to care for someone who is here, but not here—here physically, but gone mentally and psychologically. You feel alone, and in some ways, you are. For many caregivers, it’s as if there’s a stranger in the house. Adding to the stress, disorders such as Alzheimer’s disease or traumatic brain injury cause unpredictable memory loss that comes and goes—one moment here, the next moment gone. This roller coaster of absence and presence is a very stressful kind of loss—what author Pauline Boss calls ambiguous loss. Unlike death, there is no closure, no official validation, and sometimes little community or religious support. You feel you are left to cope on your own; even the strongest caregivers feel anxious and depressed. The challenge is to learn strategies to cope with this ambiguity that is so much a part of memory loss.  Symptoms of Overwhelming Stress Caring for someone with a cognitive impairment—and the ambiguous feelings that arise—can create a constancy of sorrow that can immobilize caregivers. For example, decisions are put on hold, tasks pile up, chores delayed. Doubt, confusion, helplessness and hopelessness set in, and caregivers can feel anxious and depressed. Friendships are in limbo as caregiving takes more and more of your time. Conflict increases with spouse, children/stepchildren, siblings. Family gatherings and rituals that were the glue of enjoyable family life are cancelled or changed. When a caregiver feels increasingly isolated, the possibility of depression, anxiety, abuse, guilt, shame, lack of self-care, illness or substance abuse increases.  Tips for Coping with the  Ambiguity of Memory Loss To manage the stress of caregiving, try to connect with other people: if possible, join a support group either in person or on the Internet, attend a book club, social event, or faith-based group. Here are some ideas, questions and tips to help: 1. Name your problem. Know that one real culprit causing your stress is the ambiguity from a loved one being here, but not here. Call it “ambiguous loss.” It is neither your fault nor the patient’s. It is caused by an illness. 2. Practice both/and thinking. It helps to think “both/and” rather than in the extremes of “either/or.” Instead of thinking the care recipient has to be either here or gone, think of him or her as both here and gone. This means balancing two different ideas at the same time—present, and also absent. Both/and thinking is less stressful than continuing to search for an absolutely perfect solution. Here are some examples: “I am both a caregiver—and a person with my own needs.” “I take care of both him—and myself.” “I both wish it was over—and that my loved one could keep on living.”  “I am both sad at my loved one’s illness—and joyful with my new grandchild.” “I am both sad about my lost hopes and dreams—and happy about some new plans and goals.” Now add your own examples. “Both/and” thinking may come faster if you practice with another person. 3. Know your “family” and community information and support systems. You need predictability (not ambiguity) about whom you can talk to and count on for help. Have some other people become “like family” to you? Does your community offer help and social support? Spiritual support? Recreation and respite? Information support? Talk with your Caregiver Resource Center about what help is available to you. Check the web—a quick online search for “caregiver” offers a wealth of information and online communities. If your biological family offers no help, perhaps you can create a “psychological family” that will be there for you when you need help. Talk about how to divide up the work among a “care team.” Make a written plan to know who will do what and when. Who will come once a week so that you can take some time off to do as you wish? Who will come for a week twice a year so that you can take a vacation from caregiving? Several websites can help you establish your caregiving community (see Resource list below). 4. Continue—but revise—family holidays, celebrations and rituals. Do not cancel, but rather, simplify the gatherings with the people you care about to celebrate birthdays, holidays, and religious events and rituals. Families, friends, and communities connect to celebrate life’s transitions. Human connection can help lower your stress in times of sadness. It can help you and a person with dementia feel the spirit of life around you. This is essential to staying strong when the person you care for is not able to connect fully with you. Think and talk about this: what family rituals did you celebrate as a couple or family before the memory loss? Now? How can you simplify your family rituals and celebrations to fit the circumstances now? Young people can be especially helpful in answering these questions, because of their strong imaginations and new perspectives. 5. Revise family roles. To manage the stress of caring for someone with severe memory loss, alterations are needed in what you and other family members previously did. There are changes in family roles as a result of the memory loss. What tasks are you now responsible for? What tasks have you lost? How do you manage these changes? What would help? Is there agreement in the family about who should do the caregiving? Are you resilient enough to change or do you feel you have to do  it all as before? Talk about who plays what roles in  the family. Finally, based on roles, think about how you see yourself now. You might ask: Is it right for me to take time off to go out with friends when my spouse is suffering from Alzheimer’s disease? Do I still feel like a son or daughter or more like a parent to my parent? If my spouse has memory loss, do I still feel married? How should I act? 6. Be aware of family rules.  Who is allowed to do what in your family? Is there a team approach or are you expected to do all the work alone? Become aware of your family’s rules and question them. They can change. Do your family’s rules about race, religion, class, age, or gender get talked about? For example, is there an unspoken rule in your family that only females can be caregivers? Are certain people excused from helping? Why are they excused? There may need to be a new family rule about “teamwork” so that caregiving does not fall to one person alone. Include children and teenagers in the circle of information about the illness, its effects, its unclear prognosis, and your need for help and teamwork. 7. Understand that anger and guilt are normal, but avoid harmful actions. While mixed emotions are an understandable outcome of memory loss, the negative feelings can come out as anger or, worse yet, abuse—and that is not acceptable. Talk with someone—a professional or another caregiver—about your negative feelings to prevent acting out your anger. Remember, feeling angry about the ambiguity in memory loss is normal, but acting out that anger against the patient or yourself is not. 8. It seems contradictory, but imagine something new to hope for. To stay healthy, everyone needs hope. When your loved one is ill, and you are tied to caregiving, you must discover new hope. It helps to talk about this with other people—and again, with young people. They might help you imagine new dreams for your future—new connections, new hobbies, new travel plans, new skills, new relationships. Given the stress from caregiving and the ambiguity of memory loss, what can you plan for the future that is clear and certain? How about an outing, a firm date for dinner with a friend, a hobby that has clear outcomes, a TV program that you clearly enjoy? New hopes and dreams will emerge when you can balance the ambiguity with some activities that have clear outcomes, no matter how small. 9. Check on your own health. Seek professional help if you: Feel depressed, physically sick or hopeless. Feel like hurting yourself or hurting or yelling at the person you care for. Depend too heavily on alcohol or recreational drugs. Fight with your spouse, children, stepchildren, or other family members and friends. No longer take care of yourself. When you are a caregiver for someone with memory loss, the stress of ambiguity adds to the usual pressures of caregiving. You have a duty and a right to take care of yourself.  Summary This Fact Sheet is a caregiver’s guide to managing the extra stress from ambiguous loss. To sum it up, think of managing the ambiguity as learning to walk in the fog. Keep moving forward, despite the stress of not knowing what lies ahead. But at the same time, reach out for support and human connections to stay resilient and strong.  Credits About Ambiguous Loss. See www.ambiguousloss.com/about_ambiguous_loss.phpBoss, P. (2000, paperback). Ambiguous loss. Cambridge, MA: Harvard University Press. Boss, P. (2006). Loss, trauma, and resilience: Therapeutic work with ambiguous loss. New York: Norton.  Recommended Readings Bayley, J. (1999). Elegy for Iris. New York: St. Martin’s Press. McKeithen, M. (2006). Blue peninsula: Essential words for a life of loss and change. New York: Farrar, Straus, and Giroux. Schulz, R., & Beach, S. (1999). Caregiving as a risk factor for mortality: The caregiver health effects study. Journal of the American Medical Association, 282(23), 2215-2219. Sparks, N. (1996). The Notebook. New York:  Warner Books. Film adaptation: Cassavetes, N. (Director), Harris, L. (Producer), & Johnson, M. (Producer). (2004). The Notebook [Motion picture]. New York: New Line Cinema. TeleCaregivingsm Workshop Audio Archive Here but Not Here—Finding Hope When Your Loved One Has Memory Loss (Podcast) http://caregiver.org/caregiver/jsp/content_node.jsp?nodeid=2061 Caregiving and Depression http://caregiver.org/caregiver/jsp/content_node.jsp?nodeid=393 Caregiver Health http://caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1822 Caring for Adults with Cognitive and Memory   Impairments http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=392 Dementia http://caregiver.org/caregiver/jsp/content_node.jsp?nodeid=569 Grief and Loss http://caregiver.org/caregiver/jsp/content_node.jsp?nodeid=404 Taking Care of YOU: Self-Care for Family  Caregivers http://caregiver.org/caregiver/jsp/content_node.jsp?nodeid=847  Resources Family Caregiver Alliance 180 Montgomery St., Ste. 900 San Francisco, CA 94104 (415) 434-3388 (800) 445-8106 Web Site: www.caregiver.org E-mail: info@caregiver.org Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.

Identifying Family Caregivers

Suzanne Mintz

There are more than 65 million family caregivers in America. Some are just beginning the caregiving journey while others have been providing care for five, 10, 15, even 20 years or more. It’s hard for those who are just beginning to help Mom and Dad with a few activities each week to relate to those of us who are providing more than 40 hours of care a week to a spouse/ partner, child, or parent who is severely ill and/or disabled, who lives with us, and who needs help with virtually all the ordinary activities of daily living such as dressing, toileting, eating, etc.

Those at the beginning of the journey don’t interact with the healthcare system as much as “high-burden” family caregivers — those of us who are putting in more than 40 hours a week helping a loved one. I fit into the latter group and I suspect that most of you reading this article do too. When there is talk about family caregivers needing help, about the nation’s most vulnerable citizens — and those who require the most resources — we and our loved ones are the people being discussed.

Within the caregiving community, advocates, scholars, researchers and others have all lamented the fact that as a rule, family caregivers don’t self-identify and that is the reason it is so hard to reach us with information and support. People at the beginning of the family caregiving journey are less likely to self-identify as family caregivers and that may be OK, but it is very important that high-burden family caregivers self-identify, or are identified as such by others.

The other day I had one of those “I should have had a V8” moments. I realized that it is less important for family caregivers to self-identify than it is for healthcare providers and the healthcare system to identify who are family caregivers. How can our healthcare system provide patient- and family-centered care, as we are told it should, if it doesn’t identify half of the equation? It doesn’t make sense really, and it certainly isn’t respectful. I have an idea about how family caregivers can be identified through their interaction with the healthcare system, an idea that is easy to implement and will cost virtually no money at all.

We’ve all filled out countless medical intake forms that become part of the medical record. They ask about our health history and even that of our parents, but they never ask, “Do you provide care for a family member or friend who is chronically ill and/or disabled?” or, “If you have a chronic illness or disability, is there a family member or friend who provides care to you or helps you manage your illness or disability?”

How can doctors, nurses and others pay attention to us, find out what care we provide at home, and keep an eye on our own health if they don’t know who we are? It’s important that they know exactly what type of care we provide our loved ones.

Do you do any of the following: take a loved one to the doctor regularly, manage his/her medications, or help him/her get in and out of bed and to the toilet, or eat or dress? How long have you been providing care? Do you have chronic back pain or feelings of depression? Knowing this type of information can impact the plan of care that healthcare professionals recommend and it can alert them to any problems you might have as well. While in some cases it’s obvious that there is a family caregiver, if it isn’t in the record, it isn’t official; consequently, we are truly invisible to the healthcare establishment, the government, and private insurers, despite the rhetoric to the contrary.

Given all the talk about patient- and family-centered care, not identifying family caregivers is at best an oversight and at worst hypocritical; either way, we need to correct this glaring omission. It’s important to inform healthcare professionals, key healthcare decision makers, the government, and private insurance companies that “family caregiver” is not just a term to pay tribute to, but, rather, that we are real people who provide long-term care for millions of Americans.

What you can do to ensure that family caregivers are identified in medical records:

1. Attach a piece of paper to every intake form you fill out for yourself or your loved one. Put your name and your loved one’s name at the top and then write: “I am John Smith’s wife and his primary caregiver,” or, “My daughter, Nancy Dale, is my primary caregiver,” or a similar phrase. List the top five to 10 tasks you do and note the impact on your health and well-being (chronic back pain, depression) and your life (having to cut hours at work). Save this information on your computer and print it out each time you take Mom to the doctor or visit your own.
2. Talk about the idea with your pharmacists, nurses, or others you come in contact with who have some connection to the healthcare system. They have probably never thought about the idea of identifying family caregivers on medical records.
3. Write to your insurance company. Tell them that knowing who among their beneficiaries are family caregivers, and/or who have family caregivers, will provide them with an opportunity to find new ways to improve care and cut costs.
4. Use social media to spread the idea. Talk to family, friends, and even clergy.

The goal is to create a buzz so that family caregivers and everyday people, as well as providers and decision makers, realize that something is missing on medical records: information about whether someone is or has a family caregiver. November is National Family Caregivers (NFC) Month. Let’s make NFC Month 2011 the time we began the movement to identify family caregivers in medical records.

 Click here for more information on the National Family Caregivers Association.