In Illinois, Medicaid is changing because the Deficit Reduction Act is being implemented.
Click here to read more.
In Illinois, Medicaid is changing because the Deficit Reduction Act is being implemented.
Click here to read more.
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 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
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.
2. Practice both/and thinking.
Here are some examples:
“I am both a caregiver—and a person with my own needs.”
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.
4. Continue—but revise—family holidays, celebrations and rituals.
5. Revise family roles.
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.
7. Understand that anger and guilt are normal, but avoid harmful actions.
8. It seems contradictory, but imagine something new to hope for.
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.
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.
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.
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.
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)
Caregiving and Depression
Caring for Adults with Cognitive and Memory Impairments
Taking Care of YOU: Self-Care for Family Caregivers
Family Caregiver Alliance
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:
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.
How Do I Know When My Parents Need Help?
As your parents age, you may begin to wonder or worry: “Are they safe at home? How can I tell if they need help?” Your parents are independent, private people who are not going to share with you incidents that make you think they are not okay. They do not want to go to a nursing home and lose their independence. They love their home and enjoy being in it. So they are not going to tell you the things that happen that may send them to a nursing home. As a matter of fact, they will hide these issues from you. They are afraid of going to a nursing home, and this is a rational fear. They have seen their friends and neighbors placed into facilities when their health begins to decline. All of their possession are sold or given away, the home they have spent years in is sold, they can no longer sleep in if they feel like it or eat whatever and whenever they want; their losses are great. You need to acknowledge that this is a rational fear, something that may happen to them that can be unpleasant.
The following is a list of indicators for change. Observing any of these things happening does not mean your parent cannot live at home. What it does mean is the situation needs to be assessed. Professional or informal and volunteer services can be put into place to allow your parent to stay in their home safely.
For more infomation, please click here
From Vicki Rackner, MD,
For self-preservation, many caregivers let go of rules about how holidays should be celebrated. “Being a caregiver for my sick wife offers many gifts,” said John, 73. “Maybe the most important is the invitation to look at our life in a new way. Almost out of necessity, I stripped down our holiday celebrations.”
5 Holiday Traps for Caregivers
There are several common holiday traps that family caregivers fall into, but they can be avoided. Just follow a simple concept: Free yourself from ideas about what shouldhappen, and give yourself permission to celebrate holidays in a way that works for you and your family.
Consider inviting your kids to give rather than receive by touching the lives of those less fortunate. Serve a meal at a shelter. Invite a lonely neighbor to your house. Look for a chance to give a stranger a $20 bill, or whatever you can afford.
Your life became different when you became a family caregiver, and it’s time to do things differently. Free yourself from the idea that there’s a right way to celebrate a holiday. Look at your family and decide how to make holidays work for you, and then adjust the family expectations. That’s the recipe for celebrating the blessings in your life, and the joy and love you share with others.
Vicki Rackner, MD, FACS, is a surgeon who left the operating room to help patients and family caregivers enjoy better health. A noted expert on the doctor-patient relationship, Dr. Vicki serves employers through Medical Bridges4, and welcomes everyone to join her Caregiver Club5.
Gregg Segal created a video documentary, based on the lives of a few people who have Alzheimer’s Disease.
This documentary helps to remind all of us that everyone has a past…even if the person can no longer remember it.
Click here to learn more about the project.
At times, people have private insurance and Medicare. This can cause a great deal of confusion for consumers trying to understand their health insurance benefits.
A resource called, Medicare and Other Health Benefits: Your Guide to Who Pays First, may help clarify the situation.
Medicare is the primary insurance for people age 65+ and people who have a disability.
The red, white, and blue cards can be torn, lost, or damaged.
Click here for information on how to replace a Medicare card.
The website, healthcare.gov, was established as a result of the health care reform law that President Obama signed into law in 2009. The website provides details about the Affordable Care Act and offers a searchable database enabling individuals and businesses to find health insurance plans.
In addition to providing a filter enabling small businesses to find plans covering same-sex partners, the expansion of the website — activated on Friday — lets businesses find product choices for a given zip code, sort them by out-of-pocket limits, and find plans with mental health and maternity coverage.
Secretary of Health & Human Services Kathleen Sebelius said the change fosters a more transparent and competitive marketplace in addition to allowing businesses to find plans in an unbiased manner.
“This new information will help business owners navigate what has traditionally been a complicated and confusing decision,” Sebelius said. “Both owners and their employees can feel more confident that the plans offered will be the best to suit everyone’s needs.”
An informed source said the change is just a first step and a later iteration of the website will enable individuals — not just employers — to find health insurance plans that allow for same-sex partner coverage.
According to HHS, the website is the first to bring together information and links to health insurance plans in one venue. The Centers for Medicare & Medicaid Services collected the benefits information from insurers. More than 530 insurers provided information for more than 2,700 coverage plans. Fred Sainz, vice president of communications for the Human Rights Campaign, welcomed the change.
“This is good news and another sign of progress,” Sainz said. “Anything that makes it easier for companies to ensure that all their employees, including those with same-sex partners, have access to health insurance is a good thing.
Our newsletter contains helpful information for older adults, people who have a disability, and the people who care about them.
Please click here to read the November issue.
Did you know that the NIA publishes easy-to-read booklets on numerous aging-related health topics?
Click here to learn more about the resources available from NIA.
When one partner in a long-term relationship needs expensive long term care, often the only way for the couple to pay for it is to look to Medicaid. Historically, there have been no spousal impoverishment protections afforded to partners in same-sex relationships when one partner needs long term care and applies for Medicaid. However, the combination of the new Illinois Civil Union Act and a policy change recently announced by the U.S. Department of Health and Human Services ensure that Medicaid spousal impoverishment protections are afforded to Illinois same-sex civil union partners.
For information on the online program, from the Parkinson’s Disease Foundation, please click here.
The amounts for 2012 of monthly income, and total assets, that a person can keep when their spouse enters a long-term care nursing hom, supportive living,e or needs the services of the Illinois Community Care Program (CCP) and federal financial assistance is used to help pay for these services have been released.
National Council on Aging has updated its website to be more user-friendly and helpful.
Click here to read more about the National Council on Aging and its efforts. While you are on the site, make sure to look at benefits check up to learn about federal, state, and local programs for yourself, or someone who you care about.
Presented by Attorney Janna Dutton, this session will answer fundamental legal questions common to all family caregivers responsible for taking care of individuals who are unable to care for themselves. Learn to navigate the legal issues involved in caring for an another adult. What are the duties and authorities under a Power of Attorney for Property, Power of Attorney for Healthcare, Living Trust or Living Will? How does the law allow for a person to manage another person’s finances and healthcare? How can loved ones make financial, personal and medical decisions under the law? Is it possible for your clients to avoid legal pitfalls as a caregiver? What legal options are still available in planning and paying for long term care? How can caregivers utilize Medicare, Medicaid, long-term care insurance and personal care contracts to maximize a loved one’s quality of life.
Date: Wednesday, November 30, 2011
Time: 7:00 p.m.
Location: North Grove Manor, 5520 Lincoln Ave.,. Morton Grove, IL 60053
Registration: There is no cost to attend this program. However, advanced registration is required by calling 224-534-0584. Seating is Limited.
Click here to learn more about the resources, including a phone helpline and resources regarding driving.
Click here to obtain the booklet.
For more information on the rates, please click here.
The Centers for Medicare and Medicaid released the rates for 2012.
For more information, please click here.
The Association has a program, The American Brain Tumor Association Connections Support Community, the connects patients, families, friends and caregivers for support and inspiration.
Please click here to read more.
A nationwide emergency alert system test will occur on Wednesday, November 9, 2011 at 2:00pm Eastern Time (1:00pm Central Standard Time) and will last for about three and a half minutes. The public will hear a message indicating “This is a test”. The audio message will be the same for radio, television and cable.
The National-level Emergency Alert System is a public alert and warning system that enables the President of the United States to address the American public during extreme emergencies.
Please click on the following links for the press release, fact sheet and frequently asked questions sheet about this endeavor.
The Young Onset Program, and the Association in general, is a very helpful resource for people who have Parkinson Disease and the people who care about them.
To read the current issue on their newsletter, please click here.
The Commission on Human Relations receives, investigates, and rules on discrimination complaints filed under the Chicago Human Rights Ordinance and the Chicago Fair Housing Ordinance.
For more information, please click here.
November is National Family Caregivers Month.
In addition to providing emotional and physical support, family caregivers often give much more to those in their care. Nearly 40 percent of family caregivers reduce their work hours or quit their jobs, plus spend an average of more than $5,500 of their own money annually to help provide the care they give. Yet amazingly, unpaid family caregivers provide 90 percent of the long-term care provided in the U.S. So this November, be sure to remember and recognize the family caregivers you know. For more details, visit
-We, at Dutton & Casey, thank the family caregivers, who we are privileged to assist, for your efforts to support your family members.
This web site is designed for general information only and should not be construed to be formal legal advice nor the formation of an attorney/client relationship. You should consult an attorney for advice regarding your individual situation. We invite you to contact us and welcome your calls, letters, and electronic mail. However, contacting us does not create an attorney/client relationship, so please do not send any confidential information to us until such time as a relationship has been established.