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.

Sparking Passion for the Job in Professional Caregivers

A thoughtful post from the Caregiving at the Crossroads blog, Sharon K. Brothers, MSW, points out that training programs need to ignite a spark in new professional caregivers to develop their love of the profession. Too many new workers do not complete their training or leave the profession very early. If you have ideas on ways to instill a love of caregiving in new workers, please share them with us.

WSJ Provides More Coverage On How Nursing Homes Treat Dementia Patients, After Raising Alarm On Prescription Drug Abuse Dangers

Lucette Lagnado reports on how some nursing homes are attempting to wean patients off the drugs and lower their use overall. This article is a follow-up to her Dec. 4 article in the Wall Street Journal regarding the abuse of antipsychotic drugs among dementia patients in New York nursing homes.

Interestingly, the article states that according to the Centers for Medicare & Medicaid Services, nearly 21% of patients not suffering from psychosis in nursing homes are taking these drugs. Unfortunately, even though new guidelines have been issued to limit the use of antipsychotics, the reimbursement rules tip in the favor of prescribing medication rather than hiring extra staff that would allow the nursing home to better tailor their care to the individual. Some examples of that care include giving dementia patients tasks to do that relate to their former work, using massages and aromatherapy to help calm them, and giving them more reading materials.

Oregon's POLST Orders Are Going Electronic

Oregon, the state that pioneered the POLST order ("Physician Order for Life Sustaining Treatment"), annouced that they are building an electronic registry of the orders that will be available in 2009. The registry is completely voluntary and will allow paramedics and other emergency workers to call a central hotline to find out if a patient has a POLST order. A survey by the Oregon Health & Science University found that paramedics were not always able to find a patients POLST order during a medical emergency.

The Hospice and Caregiving Blog has previously posted about the POLST form.

Holiday Memories

For many years, Rabbi Earl Grollman has contributed a column, "Because You Asked", to HFA's Journeys newsletter. Rabbi Grollman is a well-known author in the field of grief, and his writings offer both practical suggestions and comforting words to grievers. Here Rabbi Grollman addresses a common question: How do families cope with holidays after the death of a loved one?

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Dr. Earl A. Grollman

This is my first Christmas, in forty-six years, without my beloved father who died a few months ago. We want to remember him fondly but don't want to turn the holiday into a sad funeral-like observance. Do you have any recommendations for meaningful home-based family observances?

The power and comfort of personal rituals can be therapeutic gifts. Of course, each family must decide individually how best to commemorate their loss as they celebrate the holidays. The following are suggestions of how some bereaved people have mingled their tinsel with tears.

"We start with a moment of silence or someone offers a toast or prayer whenever it seems appropriate."

"Grandma loved flowers so we place a single rose on the festival table in her memory."

"Ceremoniously putting a special ornament on the tree symbolizes Dad's favorite hobby."

"In memory of our child, we dedicate the 'shammes, the 'servant' or 'pilot light' from whose flame the other Chanukah candles are lit."

"We write special notes to my mother, put them in her Christmas stocking and then read them to one another during dinner."

"During the meal, I ask, 'What leaps into your mind when I mention Uncle Bill.' We go around the table, starting with children to adults. It's a memorable and spontaneous stream of stories that bring enjoyment, laughter, and pleasure." (A tape recorder may be placed near each speaker to be later transcribed for a permanent scrapbook of memories.)

"The chair where my grandfather always sat is given to the youngest grandchild to designate the continuity of generations."

"My brother always munched on jelly beans, so we have a few around and remember him and smile."

"We look through photo albums and show home movies and recall those 'good ole days'."

"Our sixteen-year-old son wrote a poem that he reads in his sister's memory."

"We play his favorite recording: Frank Sinatra's "I Did It My Way."

For many, moments of reminiscences are one of the truest measurements of their enduring love. For as Solomon said in the Song of Songs: "Love is greater than death."

Rabbi Grollman

Informing the Public About Hospice in the Internet Age

At HFA we’ve been noticing more video documentaries and audio broadcasts about hospice and the end-of-life recently. Some of these have been made available to download for free. The amount of multi-media available online can be overwhelming. Go to YouTube or Google Video, search for ‘hospice’, and you can find thousands of videos, from local hospice documentaries and informational clips, to personal life reviews recorded by family members and shared with the world. End-of-life issues have also received a lot of attention recently in movies (for example, Away from Her, and Two Weeks). These visual presentations -- particuarly those told by families and hospice patients themselves -- sometimes speak louder than words on the printed page (or computer screen.) For our readers, here's a small sampling:

· 203 Days
A short documentary about end-of- life decision making, palliative care, caregiving and hospice. “It is an unflinching look at the day-to-day interactions between patient and caregiver, in this case an 89 - year - old woman who is living with her daughter.” By Bailey Barash, The Weinstein Hospice, Atlanta, Georgia

· Voices of Hospice
“Voices of Hospice tells the stories of three families and their reflective experiences with hospice. Each of these families share very real insights on how hospice touched their lives and the life of their loved one. Poignant, emotional and moving, Voices of Hospice, is an unscripted, real life view of families who have faced a life limiting illness and the hospice decision. The documentary took over two years to complete and more than 800 hours to produce.” Community Home Care & Hospice, location here

· The Hospice Experiment
“The '60s were a time of social movements and big changes, but a quieter revolution was underway too - one led by a few middle-aged women who wanted to change our way of death. They were the founders of the hospice movement.” This is an hour-long radio broadcast from American RadioWorks.

· Hospice Chronicles
“It's been forty years since St. Christopher's Hospice – the first modern hospice – opened in a suburb of London. Since then, millions of people around the world have chosen hospice at the end of their lives, with many patients choosing to receive care in their homes. Over the course of eight months, team Long Haul followed two hospice volunteers through their training and first assignments in patients' homes. Trained to provide "respite care," the volunteers set out to give family members a break from their caretaking responsibilities. And while one has a chance to reflect on her patient's life in a intimate setting, another gets to explore death in a rather unexpected way – a way that training never could have prepared him for.” This is an audio broadcast.

· Six Months
“This emotional and heart-wrenching special features the stories of real people who are making the journey through the final months of their lives. After Eric and Janice both receive a terminal diagnosis, they quickly begin to see things from a unique perspective, and they challenge others to examine their own lives for the things that are truly important.” Check for listings.

· A Brief Selection from YouTube
– employees at Regency Hospice, (Hiawasee,GA) discuss why they provide hospice care
– a montage of clips from Richard House Children’s Hospice in London
– a hospice nurse talks about the care she provides
– video to promote discussion among hospice/palliative care providers

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.)

High Cost of End-of-Life Care in New Jersey

A guest blog on NJ Voices by Richard J. Scott, a physician and president of The Medical Society of New Jersey, addresses the high costs of end-of-life care in New Jersey. Scott argued for a wider use of advance directives, and the expansion of hospice services in the state.

Myths About Morphine May Limit Its Use

On Dec. 11, Science Daily reported on a study that appeared in the journal, Annals of Oncology. The study examined the beliefs cancer patients hold about using opioids for pain relief. The study's author conducted 18 in-depth interviews with patients suffering from metastatic cancer in the United Kingdom. The article states that, "Cancer patients are suffering unnecessarily because they wrongly believe that morphine and other opioids are only used as 'comfort for the dying' and as a 'last resort' rather than seeing them as legitimate pain killers that can improve their quality of life." The study abstract may be viewed here.

Hospice Foundation of America has published a collection of common myths about pain management. Read them here.

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.

Review of Bereavement Studies Points to Increased Health Risk After Loss of a Spouse or Child

A review of studies on bereavement by Dutch experts show that the bereaved have an increased risk of death, illness and emotional distress. The researchers looked at studies from the U.S., Europe, and Australia. Read the summary from The Lancet online.

Schools Debate Honoring Parents Wishes at the End-of-Life

A December 9 Chicago Tribune article discussed the role public schools play in honoring end-of-life decisions for children in their care. Some parents, who have struggled through a child's life-threatening illness for years, have made the difficult decision of establishing a Do Not Resuscitate (DNR) order for their child. However, end-of-life decisions are not the province of the family alone, as this article illustrates.

While hospitals have experience with DNRs, schools are treading on new territory. Some schools may have a policy of ignoring such orders; in others, confusion may exist over what actions the order allows, according to reporter Jeff Long's article. Long's report indicates that end-of-life questions and debates are arising in areas where they were never discussed before.

Disturbing Report of Prescription Drug Abuse in Nursing Homes

The Wall Street Journal published an article last week on the use of antipsychotic drugs to subdue patients suffering from Alzheimer's disease and other dementias in nursing homes. The article points out the challenges faced by nursing homes in caring for these patients. A 1987 federal law limits how and when a patient can be physically or chemically restrained. Also, according to the article, the increase in dementia patients have left staff overburdened. The article focuses on New York state and its efforts to examine how antipsychotic drugs are being used in nursing homes there.

Documentary Airing on Bio Channel Addresses End-Of-Life

The documentary "Six Months", which premiered on the Bio channel on Dec. 5 and is continuing to air, follows two people as they deal with their terminal illnesses. The Chicago Tribune's blog review of the show has received many responses to its headline question: Six Months to Live: What Would You Do?

Lighting Candles for Children

Elizabeth Uppman

This coming Sunday, December 9, is the Compassionate Friends Worldwide Candle Lighting. From 7:00 to 8:00 p.m. in every time zone, people will light candles to honor children who have died, creating "a virtual 24-hour wave of light." It's believed to be the largest mass candle lighting on the globe.

My family first participated in the Worldwide Candle Lighting in 2000, to honor my son Gabriel. What I chiefly remember about that first year was how my 9-year-old nephew wouldn't stop playing with his candle. We had bought scented votives, one for each family member, and had placed them in glass holders like tiny globes spread out across the dining-room table. My nephew tilted his candle to make the wax run, tipping it and twirling it until the inside of his globe was coated with wax and soot. All around him, the family murmured about Gabriel, how brave he was, how resilient, how sweet.

Worldwide Candle Lighting

At one point during these murmurings my nephew looked away suddenly, as if to avoid a slap. It startled me. I noticed how hunched his shoulders were, how heavy his head looked. For the first time I wondered what it must be like, to be 9 and to know your cousin is dead. I imagined, for the first time, what he might be thinking: Would they say those things about me, if I were the one? Would they say I was brave? Would it hurt?

This year will be our eighth Worldwide Candle Lighting. My nephew is in high school now, and probably too busy to come. I'll miss him. It would have been easy, at 9, to exchange his candle for the television in the next room -- to leave us to our grieving, to act as if nothing had happened. But he didn't. I'm grateful for his patience that first year, for his uneasy faithfulness to a global ritual.

Elizabeth Uppman

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Pictured above: David Ramos Ocasio of Cidra, Puerto Rico, daughter Bianca (left), and niece Aeris Rivera remember David's brother Alex, who was robbed and murdered while at work in the family business in 2004. They were among 500 who gathered in Parque Central in San Juan, Puerto Rico during a Worldwide Candle Lighting service. Photo courtesy of Tristan Reyes.

Why Talking About End-of-Life Issues Is So Difficult, And So Important

Patricia Wen of The Boston Globe writes of the difficulty of discussing end-of-life matters with family members. She tells the struggle of one daughter to openly talk about signing a 'Do Not Resuscitate' (DNR) order with her terminally ill mother. Wen reports that both physicians and a patient's relatives delay in making decisions about DNR orders.

Massachusetts is considering introducing the POLST form ("Physician Order for Life Sustaining Treatment") which is being used by other states already.

Eldercare and the Work/Life Balance

The New York Times Shifting Careers blog posted an interview with author Cali Williams Yost. Ms. Yost is a consultant on workplace flexibility, and offers some advice on preparing for eldercare issues.

A Survey of Parents Who Have Lost Children Suggests Improvements for End-of-Life Care

The study, published in the journal Pediatrics, surveyed parents of children who had died. Pediatric deaths mainly occur while children are in a critical-care setting, and palliative care is not widely available. The study suggested improvements in the areas of doctor-parent communication, coordination of care and communication, easier access to doctors, and respect for the parent-child relationship.

Advice on Approaching the Holidays When Loved Ones Are Ill

This blog, The Assertive Cancer Patient, offers advice on dealing with holidays when a friend or family member is suffering with cancer. Jeanne Sather, a cancer patient for nine years, offers some trial questions to ask your loved one to start a dialogue about how to celebrate when illness is present.