Celebrating Death, Hospice Visits, and Alzheimer's

This post is a round-up of a few items of interest that address caregiving, death, and hospice from a personal perspective.

• TIME Magazine had an essay from Nancy Gibbs about celebrating the day of her father's death. The metaphor her husband used to explain his death to their daughter is wonderful.

  How is it that the one event we know with absolute certainty will occur is still one we improvise? Do we lower our voices, dress in black, save a lock of hair as the Victorians did and wove into jewelry? Do you let young children see a corpse--the very word suddenly cold and empty because his flesh and blood no longer matter, his meaning filling the space once his presence is gone? "Is that Grandpa?" our 4-year-old wondered. "No, honey," my husband told her. "He's not here anymore. That's just his body." She worked at this, how the arms that held her and the lap she sat in were no longer him. "You know how when we go to Florida, we leave our winter coats at home because we won't need them there? Well, he just left this behind because he doesn't need it anymore." And this appeared to make perfect sense to her, and she went to play, full of love and certainty, and we all took a walk in the watery light of late afternoon.

• A medical student at the University of Glasgow blogs about her visit to a hospice as part of her medical training.

  I spent Wednesday morning at a hospice on the south side of the Clyde.
  
  It may not be how most people would react, but afterwards, standing outside, I turned to my VS tutor and said, “This is going to sound weird, but it seemed like a really happy place.”

• The News-Times (Connecticut) carried a story about the strong love that remains in a 68-year marriage of a couple where the husband has Alzheimer's disease.

Grants Being Awards for Community College Caregiver Training Programs

The Caregiving Project for Older Americans, a project of International Longevity Center-USA and with funding from the Met-Life Foundation , will award up to twelve $25,000 grants to community colleges to establish new caregiver training programs or to build upon existing programs. They hope "to encourage the development of new and novel programs to train both family and professional in-home caregivers, promote skill development, advance the quality of care, and provide opportunities for career development." The deadline for submissions is May 15, 2008. Applications can be downloaded here, or view the press release.

Local Pennsylvania Paper Writes Caregiving Series

This three-part series from the Bucks County Courier Times focuses on caring for someone with Alzheimer's disease and dementia, by sharing one family's experiences. In the first article, writer Jo Ciavaglia talks about how Marjorie Jackson first noticed her mother was developing dementia, and the changes it brought while still undiagnosed. Next, she describes the mounting tasks Jackson begins handling for her mother as her symptoms worsen. It also discusses care options in Pennsylvania. The final article, deals with Jackson's placing her mother into a nursing home and the emotional difficulties of the transition.

Using Humor in Caring for the Terminally Ill

From the UK Journal of Clinical Nursing, Canadian researchers spent nearly 300 hours interviewing staff, patients and their families in both palliative care and intensive care units. They report that the use of humor, by patients and their caregivers, plays a vital role in "promoting team relationships and adding a human dimension to the care and support that staff provided . . ."

Bloggers Discuss Caregiving Challenges

There are a couple of recent personal blog posts we wanted to share this week. First, this post discusses a difficult issue faced by aging parents caring for an adult disabled son. The blogger writes of his brother, who has Muscular Dystrophy and has been in a wheelchair for many years. A recent fall has made the poster question how long his parents can continue to provide care and how hard it will be to have that conversation.

Scott is a full grown man, and he doesn’t have the strength to help when he needs to be transfered from his wheelchair to the bed, or the tub, or his easy chair my dad set up to help his legs rest. And my dad turns 65 this year.

Dad has always been a big bear of a man, but he wont be able to lift Scott forever. . . Even though he needs professional semi-skilled care . . .we might could come up with some arrangement where my brother could be cared for in our homes.

But my parents are stubborn people, and it may sound funny coming from a 43 year old, but I don’t want to disobey them. I think that deep down, all of us, parents and children, know that a day is coming when the two able-bodied sons are going to have to sit down with the parents and say, “No disrespect, but you’re going to have to let it go and let us take over”. But for now, we have instead, this uneasy silence where we sons know what we have to say, but we don’t say it.

I think it’s going to take Scott telling them to let the brothers take over. Ironically, they’ll listen to him.

Thanks to the GenBetween blog for sharing. The second post, part of Virginia Cornue's series of posts on sandwich caregiving, discusses the guilt associated with making decisions about where and how your parents will receive care, and the challenges faced by those caring for young children along with aging parents.

Of all her 11 siblings, my mother was the only one who was in institutional care at the end of her life. This is something I still have not entirely reconciled. This in one of those it's not the right thing to do--not the right way to treat your elders values I hold. But it was the only practical thing to do. . .

. . .If I had been truely a Sandwich Generation participant...if I had had to care for her long distance, AND take care of an infant, go to grad school--commuting an hour or more each way, and teach parttime, do my share of the domestic chores, maintain some sort of marital and social life, I think, NO I know, I would have had not only a nervous breakdown but a physical one as well. . .

. . .More than a decade later, I still miss her daily. Her last days at The Oaks were as good as they could be. She, my model joyolgist, told me scatological nursing home jokes to lighten my heart. But I--I still don't feel right about how her last days ended. My Mom, however, would say differently to me. As is on her gravestone, she would say to me, "Do your best, honey."

Did I? Yes--given the circumstances. I guess that's all we can do in the long run.

Knowing When Your Caregiving Is Too Much

In this post from MSCaregiver.com, a husband ponders whether his caregiving is supportive of his wife's MS, or restrictive. He debates whether his goal should be to help his wife be independent, in the same way he helps his daughters to develop their independence. In the end, he gives this sage advice:

As a caregiver, if you wonder when or whether your caregiving might be “too” caregiving, there’s a simple way to find out. Ask the person for whom you care if you’re doing too much.

Children Assist in Care of Alzheimer's Patients, According to New Study

The Alzheimer's Foundation of America (AFA) released a study last week showing that among so-called "sandwich caregivers" (those who are caring for an elderly relative while also parenting children under 21,) most had children who assisted them in providing care, including attending doctors’ appointments, feeding, and dressing their loved ones. In this third annual study conducted by AFA, 559 caregivers were interviewed in December 2007. From the press release:

Among children, ages 8-21, who are involved in caregiving, many are reported as taking on significant tasks:

• About one-third of young adults (ages 18-21) assist with doctors’ appointments;


• 42% of young adults assist with transporting loved ones with Alzheimer’s disease;


• About one-quarter of young adults and teens (ages 13-17) assist with activities of daily living, such as feeding and dressing;


• Nearly 90% of pre-teens (ages 8-12) visit and entertain a loved one with Alzheimer’s disease (please use caution when interpreting results due to small base size)


• Approximately 85% of teens pay visits to the person with the disease.

“Taking care of someone with Alzheimer’s disease can be an enormous drain on the caregiver and on family resources. For sandwich caregivers the problem is even more acute. It is clear that caregiving is a multigenerational concern. Young adults and even teens and pre-teens are being impacted in life changing ways by their caregiving responsibilities,” said Eric J. Hall, AFA’s president and chief executive officer.

Reminder: PBS Series Caring for Your Parents Airs Tonight

On PBS tonight, Caring for Your Parent - check local listings here. About the program:

As the population ages, many adult children are grappling with an unprecedented social, cultural, economic, and personal revolution as they transition into the primary caregiver role for their aging parents. Produced, written, and directed by award-winning filmmaker Michael Kirk, Caring for Your Parents is a moving two-hour special that draws much-needed attention to this universal reality.

The first 90-minutes of Caring for Your Parents underscores today's struggle to keep parents at home, tensions between siblings, and the complexity of shifting caregiver roles through an intimate look at five American families. In the end, the documentary contends successful caregiving requires one primary ingredient‒love.

Immediately after the 90-minute broadcast, medical correspondent Dr. Art Ulene leads "A Conversation About Caring." This half-hour panel discussion offers concrete advice and guidance on how to start the conversation‒often the most difficult step in caregiving.

Caring for Your Parents is a Kirk Documentary Group, Ltd. Production for WGBH Boston. The executive producer is Laurie Donnelly. Major funding is provided by Harrah's Foundation. Additional funding by the Corporation for Public Broadcasting, a private corporation funded by the American people.

Sibling and Long-Distance Caregiving Issues Examined

We wanted to share two items about sibling and long-distance caregiving. First, Carol O'Dell writes about the difficulty in coordinating caregiving between sibling on her Mothering Mother and More blog.

If you’re the primary caregiver, you may feel resentment toward your “free” sibling who works, goes to movies, take vacations.

If you’re the “other” sibling, you feel guilty. You don’t know where you fit in. You’re uncomfortable speaking up and voicing your opinion because after all, you’re not the one doing all the work–and you’re reminded of that often.

If you’re the third sibling, well, you might as well be in the outer Netherlands. That’s might be how it feels. All those childhood birth order issues get kicked right back up.

Second, an article from the Craig Daily Press (CO) discusses the experience of Rene Mattone, who lives far away from her parents, leaving the responsibility for daily caregiving to her six siblings. Her father is in the early stages of Alzheimer's disease and her mother has cancer.

In some respects, living far away is easier because Mattone doesn’t have to witness the changes in her parents — her father is in the early stages of Alzheimer’s disease and her mother has cancer — yet the distance often leaves her feeling guilty and helpless.

“I feel like I’d like to be able to do more, like I’m a little bit of a disappointment because I can’t be there,” she said.

Living far away from an aging parent — especially one who is injured or sick — can be an emotional rollercoaster for an adult child, who must cope with worry, frustration and feelings of inadequacy. These feelings are compounded by the stress of caring for that person over hundreds or thousands of miles.

Seeking Grandparents for Caregiving Survey

From the Denton Record-Chronicle:

Dr. Bert Hayslip of the University of North Texas Psychology Department and UNT student Shanna Davis are conducting a survey exploring the role of endurance as a resource among grandparents who are raising grandchildren on a full-time basis. The survey will ask questions about the grandparents, the caregiving situation and about the relationship to the grandchild. The survey takes about an hour to do and can be done at home.

To qualify for the project, grandparents must be primarily responsible for the full-time care of their grandchildren, who must be younger than 18 and residing with the grandparent.

Those interested can have the survey mailed to them. All information will be confidential. Each grandparent will be assigned a code number that will uniquely identify them only to Hayslip and Davis; no names will appear on the survey.

Also, grandparent caregivers are under no obligation to complete the survey even if they have begun the project. If desired, participants may receive results of the project when it is completed.

For more information, call 940-565-2675 or e-mail hayslipb@unt.edu

Weinberg Foundation Offering Family and Informal Caregiver Support Grants

The Harry and Jeanette Weinberg Foundation, based in Baltimore, announced a new grants programs aimed at supporting caregivers of the elderly. The Foundation plans to award 12 to 20 grants ranging from $300,000 to $900,000 to nonprofit community groups, who will also need to provide a local match. Non-profit 501(c)(3) organizations, including aging and human service agencies, faith-based and other community-based organizations, tribal organizations, and units of local government are encouraged to apply. For more information, see their website, www.hjweinbergfoundation.org.

Anticipatory Grief Prevalent Among Dementia Caregivers

Professor Jacquelyn Frank, of the University of Indianapolis has examined the challenges faced by caregivers of dementia patients.

Frank gathered responses from more than 400 dementia caregivers around Indiana, most of them spouses and adult children of Alzheimer’s patients . . . she was struck immediately by the responses to this open-ended question: “What would you say is the biggest barrier you have faced as a caregiver?”

Though the respondents’ language varied, a computer analysis found that more than 80 percent of them touched on a common theme: “letting go of the person we used to know,” as one person wrote, or “watching your loved one slip away and forget who people are.”

The comments illustrate two previously noted but seldom-studied phenomena seen in those caring for the terminally ill. “Anticipatory grief” is the pain of losing a loved one, felt in advance of the patient’s death. “Ambiguous loss” is the discordant feeling that comes from interacting with a patient who is physically alive but no longer seems present socially or psychologically.

It’s not surprising that such effects would be common among dementia caregivers, but this study is among the first to document their prevalence.

“The fundamental barrier experienced by Alzheimer’s caregivers appears to be a combination of anticipatory grief and ambiguous loss, rather than hands-on care issues,” Frank says.

Hospice Foundation of America's 2007 book, Living With Grief: Before and After the Death, dealt with the concept of anticipatory grief.

The Strain of Caregiving on Marriages

Last Sunday's Washington Post Magazine featured a look at the stress and strain long-term caregiving causes in marriages. The article follow one couple's caregiving journey, when the wife is diagnosed with Huntington's disease. On Monday, the Post hosted a live discussion with the article's author and the husband featured in the magazine.

PBS Produces Caring for Your Parents

Last month we shared a request for videos from PBS for people caring for elderly parents. The program will be airing April 2, 2008 spring and PBS has placed some of the videos on their website.

"As the population ages, many adult children are grappling with an unprecedented social, cultural, economic, and personal revolution as they transition into the primary caregiver role for their aging parents. Produced, written, and directed by award-winning filmmaker Michael Kirk, Caring for Your Parents is a moving two-hour special that draws much-needed attention to this universal reality."

Recent Study Suggests Dementia and Other Cognitive Impairments Are on the Decline

The results of a national study showing a downward trend in the rate of cognitive impairment among Americans aged 70 and older were widely reported yesterday. The term 'cognitive impairment' is used to cover those suffering from significant memory loss and different types of dementia, including Alzheimer's disease. The study from the journal Alzheimer’s and Dementia was produced by a team of two University of Michigan Medical School physicians and their colleagues. An excerpt from the University of Michigan press release:

"The prevalence of cognitive impairment in this age group went down by 3.5 percentage points between 1993 and 2002 -- from 12.2 percent to 8.7 percent, representing a difference of hundreds of thousands of people."

"And while the reasons for this decline aren't yet fully known, the authors say today's older people are much likelier to have had more formal education, higher economic status, and better care for risk factors such as high blood pressure, high cholesterol and smoking that can jeopardize their brains."

Read coverage of the study reported by the Seattle Times, Boston Globe, and Science Daily. Carol Bradley Bursack, eldercare columnist for OurAlzheimers.com, writes about how seemingly conflicting studies can confuse the general population. (In October 2007, The American Academy of Neurology released a study indicating that among people who develop dementia, those who are more educated lose their memory at faster rate.) Bursack writes:

"One thing these studies all seem to agree on is that people shouldn't quit learning. Exercising one's mind and caring for one's physical health seem to be key to remaining as healthy as possible, overall. Keeping an active mind and body are not guarantees that dementia will not strike. But keeping our minds active and our bodies as healthy as our genes will allow are somethings we can do that certainly will not cause harm, and doing these things can give us hope that we may remain dementia free, or at least put off the effects for a longer period of time. There will always be exceptions, but why not try?"

"The study is also realistic in noting that the sheer numbers of elders who are (and will be) living longer ensures that we will be fighting Alzheimer's and other dementia for years to come. Nothing is 'licked' yet. However, any good news on this front is welcome to we who are on the leading edge of baby boomers, and to our children."

Another Recall Notice - Fentanyl Patches

Actavis Inc., the United States manufacturing and marketing division of the international generic pharmaceutical company Actavis Group, has announced that 14 lots of fentanyl transdermal system CII patches sold in the United States by Actavis' subsidiary Actavis South Atlantic LLC are being voluntarily recalled from wholesalers and pharmacies as a precaution. They include:

Actavis Fentanyl Transdermal System, 25 mcg/hr.
Actavis Fentanyl Transdermal System, 50 mcg/hr.
Actavis Fentanyl Transdermal System, 75 mcg/hr.
Actavis Fentanyl Transdermal System, 100 mcg/hr.

Anyone with Actavis Fentanyl transdermal system patches with the above listed lot numbers should call 877-422-7452.

For more detailed information, please visit the FDA Recall Notice.

Important Recall Information for Caregivers: Duragesic Patch

The American Pain Foundation announced an important recall on their website we wanted to share.

"On Tuesday, February 12, 2008, PriCara, the manufacturer of transdermal fentanyl (Duragesic®), announced that supply lots of their 25mcg/hr patches were recalled due to a flaw in the cut of one edge. To be aware that some patches may unintentionally expose patients directly to the medication gel (because the integrity of the barrier could be compromised), these lots as well as those manufactured by ALZA and sold by Sandoz have been voluntarily recalled to remove them from the market place. Other strength patches (12.5, 50, 75 and 100 mcg/hr) are not affected."

Discussing Caregiver Stress Syndrome

The CareStation blog on AGIS recently opened up a discussion about a CNN article on "caregiver stress syndrome." Readers can join the ongoing forum discussion: is having an official diagnosis to describe the effects of caregiving helpful to the caregiver?

Share Your Caregiving Story with PBS

We're passing along an invitation posted on CaregivingBlog, from a PBS station. They are collecting short video stories from people who have care for elderly family members, and want to know how it has changed their lives.

Simple Caregiving Technique Helps in Dementia Care

An interesting post on The Dementia Caregiver's Toolbox blog, about using the "hand-over-hand" technique to help assist dementia sufferers to complete tasks. An excerpt:

"You, as the caregiver, put your hand over the hand of the person who has dementia and gently guide them to the activity at hand. If the task is walking, you would put your hand over their hand and slowly lead them down the hall, maybe clasping both your hands around their hand. If the task is stirring the cookie batter, you would put your hand over their hand and "show" them the motion used to stir and do it with them. You can use this strategy for helping people get in and out of chairs, brushing teeth, turning on televisions, combing their hair, you name it."

Caregiving Across the States Resource Has Been Updated

The National Center on Caregiving (part of the Family Caregiver's Alliance) has updated the state profiles for their Caregiving Across the States resource. The resource supplies information about publicly-funded caregiver support programs broken down by state. We found out about the update by reading the Minding Your Elders and Terri's Special Children blogs; thanks for sharing.

Rosalynn Carter's Editorial on the Needs of Caregivers

In a recent edition of the CDC's Preventing Chronic Disease journal, former First Lady Rosalynn Carter provides an editorial, "Addressing the Caregiving Crisis." The editorial serves as a "call to arms" for American society to face our caregiving crisis. Mrs. Carter founded and is President of the Board of Directors of the Rosalynn Carter Institute for Caregiving in Georgia. After outlining the impact on family and profressional caregivers and U.S. businesses, she writes:

"To address this 'caregiving crisis,' all sectors of society must come together to develop solutions. A broad and coordinated response should address workforce development, community planning, and caregiver education and support, including regulatory and financing issues, more effective use of technology, and development and dissemination of evidence-based practices in caregiving. Building an infrastructure of supports for caregivers will improve caregiver effectiveness and reduce the harm, injury, and burden that can be associated with caregiving in isolation. Most importantly, I believe there must be a fundamental shift in how we value and support caregivers."

New Study Examines Caregiving Among Gay Seniors

A study from the Journal of Gay & Lesbian Social Services questioned 199 lesbian, gay, and bisexual adults aged 40-85 about their history of giving and receiving care. The researchers from New York University and Pennsylvania State University, found that older gay adults create networks of caregivers to help support each other as they age. An excerpt from the article:

“These findings contradict old myths about elderly gay people leading lonely lives of quiet desperation,” said Dr. Robert-Jay Green, executive director of the Rockway Institute, a national center for LGBT research and public policy. “LGB seniors create vibrant communities of care that overcome the difficulties posed by discrimination or by greater levels of rejection from their biological families.”

Children Can Fear the Future When They Have Two Parents with Dementia

This article from the New York Times examines the concerns of children whose parents are suffering from dementia. When a caregiver has two parents suffering from the disease, there is the added stress of worrying whether you will be afflicted in future years.

The Personality Changes Brought About by Alzheimer's Can Be Disturbing to Family Members

Coping with the mood and personality changes that can accompany Alzheimer's can be particularly challenging for family caregivers. Some wonder if the disease has allowed a patient's true personality to surface. This New York Times article by Denise Grady addresses these concerns and discusses the ways to cope.

Juggling Work and Elder Care

This article, originally appearing in the Investor's Business Daily, discusses how companies are handling elder care issues as more and more employees need to care for aging relatives. Offering flex time, referral services, and help lines are some examples of how businesses are managing.

During the Holidays, Check on Your Elderly Relatives and Friends

Here is a list of straight-forward, practical things to check for when visiting your aging family members and friends during the holiday season (from the blog, Taking Care of Mom at Home.)

Recent Court Decision Could Change Eldercare Options For Some in Maryland

The Baltimore Sun (Dec. 10) reports on a ruling by the Maryland Court of Special Appeals, stating that the state's standards for patients' inclusion in a Medicaid program were stricter than is allowed under federal law. The program is for designed to assist poorer seniors receive care in their homes or communities. An elderly woman daughter, whose mother had been turned down by the prgram, sued the state with the help of AARP and the Maryland Legal Aid Bureau. In Maryland, half the program is paid by the state, half by the federal government. Poorer states pay a lesser share of the costs. Only three states have waiting lists for the program, and Maryland's was the longest.

When Faced With the Challenges of Caregiving, Find a Mentor

Dorian Martin, who cared for her mother and grandmother, offers a wonderful suggestion to those struggling with the new role of caregiver. Find a mentor to help you through. Look to people you already know who have assisted their loved ones and ask for their advice and their support. Read the full article at OurAlzheimer's.com.

Costs of Providing Elder Care Are Higher Than Previously Thought

The New York Times reports on the first in-depth study of the expenses Americans spend to care for aging parents or spouses. The study, conducted by the National Alliance for Caregiving, says those costs average $5,531 per year. According to the article, the report is being released today and will be part of a Capitol Hill briefing this week. The complete report (PDF) is available here.

Caring for an Ailing Spouse In Arizona Has Become More Financially Viable

The Arizona Daily Star reported this weekend that the Arizona Long Term Care System, the state's Medicaid program for the elderly and disabled, will now pay spouses to provide basic health care for husbands or wives. In October, the state received a waiver from the federal government, making the support possible. How much spouses are paid is determined by local caregiving rates, which in Arizona average around $10 per hour.

In October, we posted a report about the financial costs of caregiving that stated Vermont had also received a waiver from Medicaid that enables the state to pay spouses who provide care. In addition, Oregon has paid spousal caregivers for over a decade from another state fund, but this year began running their program through Medicaid. We will make sure to post any additional reports from other states as we learn about them.

New MIT Study on Elder Care Makes Recommendations to Improve Support to Caregivers

Family caregivers provide a significant portion of the care given to the elderly, according to a new study by MIT's Workplace Center. The report offers a summary of ten recommendations to expand support for caregivers in the state of Massasschusetts. The researchers point out that the plan is only a starting point of a conversation, and in order for improvement to take place there is " . . .a need for a cultural shift, a change in attitudes and social values."

Building upon a study started in 2003 that determined family caregivers exist as a "shadow workforce," the MIT Workplace Center convened a public forum in January 2007, "Who Is Caring for the Caregivers?" A panel of five geriatric health care and elder care professionals and over 160 attendees, were asked several questions about the challenges of family caregiving and how to improve supports for caregivers.

Read the complete report here (PDF).

Celebrate Hospice and Family Caregivers This Month

November is National Hospice Month, a month to recognize the invaluable work that hospices do each day, to educate consumers about the benefits of hospice, and to honor those who cope with caregiving and end-of-life issues in their own lives.

HFA has some excellent resources that shatter myths about hospice care and can help promote the concept of hospice.

National Family Caregivers Month (NFC Month) is designated as a time every year to thank, support, educate and celebrate more than 50 million family caregivers across the country currently providing an estimated $306 billion in "free" caregiving services. This year NFC Month will focus on family caregivers speaking up for their rights. The National Family Caregivers Association has a number of materials online.

New Lawsuits Challenge "Family Resposibility Discrimination"

USA Today reports on an increase in lawsuits filed by employees claiming discrimination on the job due to their family caregiving obligations. The federal Equal Employment Opportunity Commission (EEOC) issued a guidance for employers, giving them examples of how bias can occur. The EEOC website also includes a fact sheet for employers which ". . .illustrates circumstances under which discrimination against a working parent or other caregiver constitutes unlawful disparate treatment under the federal EEO statutes."

Safety While Caregiving Should Not Be Overlooked

Nancy Norris, a licensed clinical social worker, gives some tips on home safety for caregivers that are often overlooked in this Ledger Dispatch (Amador City, CA) article.

The Positive Role Hospice Volunteers Play in End-of-Life Care

This post from The Kansan.com shares the experiences of a hospice volunteer at Hospice Care of Kansas. One volunteer, Jennifer Wedan, explains why she became a volunteer. '“I wanted to give something back. Something was laid on my heart to help people go through this experience.”'

Hospice Program Helps Patients Keep Pets

Pets are a central part of many peoples' lives, bringing comfort and companionship. Yet when someone becomes terminally ill, it can be difficult to keep up with a pet's care, or even keep a pet at all if the illness necessitates a move. One hospice program in Tulsa, Oklahoma, has developed an innovative program to allow people to keep their pets even as they face illness and death.