Loading...

Follow Family Caregiver Alliance on Feedspot

Continue with Google
Continue with Facebook
or

Valid

JoNel Aleccia, Kaiser Health News and Melissa Bailey, Kaiser Health News
Photos by Heidi de Marco and Frank Carlson, PBS NewsHour and Randall Hill

With a bullet in her gut, her voice choked with pain, Dee Hill pleaded with the 911 dispatcher for help.

“My husband accidentally shot me,” Hill, 75, of The Dalles, Ore., groaned on the May 16, 2015, call. “In the stomach, and he can’t talk, please …”

Less than four feet away, Hill’s husband, Darrell Hill, a former local police chief and two-term county sheriff, sat in his wheelchair with a discharged Glock handgun on the table in front of him, unaware that he’d nearly killed his wife of almost 57 years.

The 76-year-old lawman had been diagnosed two years earlier with a form of rapidly progressive dementia, a disease that quickly stripped him of reasoning and memory.

“He didn’t understand,” said Dee, who needed 30 pints of blood, three surgeries and seven weeks in the hospital to survive her injuries.

As America copes with an epidemic of gun violence that kills 96 people each day, there has been vigorous debate about how to prevent people with mental illness from acquiring weapons. But a little-known problem is what to do about the vast cache of firearms in the homes of aging Americans with impaired or declining mental faculties.


Dee Hill examines the last of the guns that once belonged to her husband, Darrell Hill. “I no longer have any guns in my home,” she says. (Jason Lelchuk/PBS NewsHour)

Darrell Hill, who died in 2016, was among the estimated 9 percent of Americans 65 and older diagnosed with dementia, a group of terminal diseases marked by mental decline and personality changes. Many, like the Hills, are gun owners and supporters of Second Amendment rights. Forty-five percent of people 65 and older have guns in their household, according to a 2017 Pew Research Center survey.

But no one tracks the potentially deadly intersection of those groups.

A four-month Kaiser Health News investigation has uncovered dozens of cases across the U.S. in which people with dementia used guns to kill or injure themselves or others.

From news reports, court records, hospital data and public death records, KHN found 15 homicides and more than 60 suicides since 2012, although there are likely many more. The shooters often acted during bouts of confusion, paranoia, delusion or aggression — common symptoms of dementia. They killed people closest to them — their caretaker, wife, son or daughter. They shot at people they happened to encounter — a mailman, a police officer, a train conductor. At least four men with dementia who brandished guns were fatally shot by police. In cases where charges were brought, many assailants were deemed incompetent to stand trial.

Many killed themselves. Among men in the U.S., the suicide rate is highest among those 65 and older; firearms are the most common method, according to the Centers for Disease Control and Prevention.

These statistics do not begin to tally incidents in which a person with dementia waves a gun at an unsuspecting neighbor or a terrified home health aide.

Volunteers with Alzheimer’s San Diego, a nonprofit group, became alarmed when they visited people with dementia to give caregivers a break — and found 25 to 30 percent of those homes had guns, said Jessica Empeño, the group’s vice president.

“We made a decision as an organization not to send volunteers into the homes with weapons,” she said.

At the same time, an analysis of government survey data in Washington state found that about 5 percent of respondents 65 and older reported both some cognitive decline and having firearms in their home. The assessment, conducted for KHN by a state epidemiologist, suggests that about 54,000 of the state’s more than 1 million residents 65 and older say they have worsening memory and confusion — and access to weapons.

About 1.4 percent of those respondents 65 and older — representing about 15,000 people — reported both cognitive decline and that they stored their guns unlocked and loaded, according to data from the state’s 2016 Behavioral Risk Factor Surveillance System survey. Washington is the only state to track those dual trends, according to the CDC.

In a politically polarized nation, where gun control is a divisive topic, even raising concerns about the safety of cognitively impaired gun owners and their families is controversial. Relatives can take away car keys far easier than removing a firearm, the latter protected by the Second Amendment. Only five states have laws allowing families to petition a court to temporarily seize weapons from people who exhibit dangerous behavior.

But in a country where 10,000 people a day turn 65, the potential for harm is growing, said Dr. Emmy Betz, associate research director at the University of Colorado School of Medicine, a leading researcher on gun access and violence. Even as rates of dementia fall, the sheer number of older people is soaring, and the number of dementia cases is expected to soar as well.

By 2050, the number of people with dementia who live in U.S. homes with guns could reach between roughly 8 million and 12 million, according to a May study by Betz and her colleagues.

“You can’t just pretend it’s not going to come up,” Betz said. “It’s going to be an issue.”

Polling conducted by the Kaiser Family Foundation for this story suggests that few Americans are concerned about the potential dangers of elders and firearms. Nearly half of people queried in a nationally representative poll in June said they had relatives over 65 who have guns. Of those, more than 80 percent said they were “not at all worried” about a gun-related accident. (Kaiser Health News is an editorially independent program of the foundation.)

Dee Hill had ignored her husband’s demands and sold Darrell’s car when it became too dangerous for him to drive. But guns were another matter.

“He was just almost obsessive about seeing his guns,” Dee said. He worried that the weapons were dirty, that they weren’t being maintained. Though she’d locked them in a vault in the carport, she relented after Darrell had asked, repeatedly, to check on the guns he’d carried every day of his nearly 50-year law enforcement career.

She intended to briefly show him two of his six firearms, the Glock handgun and a Smith & Wesson .357 Magnum revolver. But after he saw the weapons, Darrell accidentally knocked the empty pouch that had held the revolver to the floor. When Dee bent to pick it up, he somehow grabbed the Glock and fired.

“My concern [had been] that someone was going to get hurt,” she said. “I didn’t in my wildest dreams think it was going to be me.”

An investigation classified the incident as an assault and referred it to Wasco County District Attorney Eric Nisley, who concluded it was “a conscious act” to pick up the gun, but that Darrell didn’t intend to harm his wife.

“I evaluated it as if a 5- or 6-year-old would pick up the gun and shoot someone,” Nisley said.

Dee was outraged at the suggestion she consider pressing charges.

“I didn’t want anyone to think it was intentional. Nobody would have believed it anyway,” she said.


After Darrell was diagnosed with dementia, Dee locked his guns in a vault in the carport of their home. (Frank Carlson/PBS NewsHour)

Proponents of gun ownership say guns are not to blame.

The National Rifle Association declined to comment for this story.

Dr. Arthur Przebinda, who represents the group Doctors for Responsible Gun Ownership, said researchers raising the issue want to curtail gun rights guaranteed by the U.S. Constitution, and are “seeking ways to disarm as many people as possible.”

Focusing on the potential of people with dementia shooting others is a “bloody shirt-waving tactic that’s used to stir emotions to advance support for a particular policy endpoint,” he said.

“I’m not disputing the case that it happens. I know it can happen,” Przebinda said. “My question is how prevalent it is, because the data is what should be driving our policy discussion, not fear or fear-mongering. It’s bad science.”

Two decades of NRA-backed political pressure that quashed public health research into the effects of gun violence partly explain the lack of data, experts said. But that doesn’t mean there’s no problem, said Dr. Garen Wintemute, director of the Violence Prevention Research Program at the University of California-Davis.

“[Critics] are arguing as if what we have is evidence of absence,” he said. “We have something quite different, which is absence of evidence.”


Delmar Scroughams and his wife, Vergie "Verg" Scroughams, at home in Rexburg, Idaho. During a lucid moment in May, Delmar, who has dementia, acknowledged his weapons could prove dangerous.
(Heidi de Marco/KHN)

Even some families grappling with the problem are wary about calls to limit gun access.

“I hope your intent is not to ‘bash’ us for our beliefs and actions with guns,” said Vergie “Verg” Scroughams, 63, of Rexburg, Idaho, who showed KHN reporters how she hid a loaded gun from her husband, who developed dementia after a stroke in 2009.

Verg became worried after Delmar Scroughams, 83, grew angry and erratic earlier this year, waking up in the night and threatening to hit her. It was out of character for the former contractor who previously built million-dollar Idaho vacation homes for families of politicians and celebrities.

“In 45 years of marriage, we’ve never had a big fight,” she said. “We respect each other and we don’t argue. That’s not my Delmar.”


Verg holds a .38-caliber revolver. “Guns have been a big part of our lives,” says Verg, who got her first rifle at age 12. (Heidi de Marco/KHN)

Six months ago, Verg took the loaded .38-caliber Ruger from a drawer near Delmar’s living room recliner, removed the bullets, and tucked it under socks in a box on a high shelf in her closet. “He’ll never look there,” she said.

She doesn’t want Delmar to have access to that gun ― or to his collection of six shotguns locked in the bedroom cabinet. But Verg, a real estate agent who shows homes in remote locations, doesn’t want to give up the weapons she counts on for comfort and protection. She carries her own handgun in the console of her car.

“We live in Idaho. Guns have been a big part of our lives,” said Verg, who got her first rifle at age 12 and recalls hunting trips with her two sons among her fondest memories. “I can’t imagine living without guns.”

KHN Video: Dementia and Guns - YouTube

 

Guns Under The Pillows

Federal law prohibits people who are not mentally competent to make their own decisions, including those with advanced dementia, from buying or owning firearms. But a mere diagnosis of dementia does not disqualify someone from owning a gun, said Lindsay Nichols, federal policy director at the Giffords Law Center to Prevent Gun Violence. If a gun owner were reluctant to give up his arsenal, his family would typically have to take him to court to evaluate competency.

Since the school shooting in Parkland, Fla., in February, more states are taking action to make it easier for families ― including those with a loved one with dementia ― to remove guns from the home.

Eleven states have passed “red flag” gun laws that allow law enforcement or other state officials, and sometimes family members, to seek a court order to temporarily seize guns from people who pose a threat to themselves or others. Red flag bills have proliferated across the country since the Parkland shooting; six were passed this year and six more are pending.

In Connecticut, which in 1999 enacted the nation’s first red flag law, police used the measure to seize guns from five people reported to have dementia in 2017, according to a KHN records review.

Last summer, an 84-year-old man with dementia alarmed his neighbors at a senior living community in Simsbury, Conn., by announcing that he had a gun and planned to shoot a bear. The man later reported that his .38-caliber Colt revolver was missing; police found it, loaded, in the console of his car. Police got a court order to seize that gun and a rifle he had in his closet.

In December, police seized 26 guns from the Manchester, Conn., home of a 77-year-old man with dementia who was threatening to kill his wife. She told police that he was a danger to himself, and that his threats were “normal baseline behavior.”

In 2008, police in Manchester also seized nine firearms from a 70-year-old man with dementia who had pointed a gun at his daughter when she went to check on him because he didn’t recognize her at first. The man had been sleeping with loaded guns under his pillows and hiding guns in drawers, and his daughter was worried for the safety of his home health aides.

In Ohio, at one memory care clinic, 17 percent of patients diagnosed with dementia reported having a firearm in their homes, according to a 2015 Cleveland Clinic study.

But many families are reluctant to take away the sense of safety, independence and identity that their loved one, often the family patriarch, derives from guns.

 

‘A Guilt I’ll Never Ever Get Away From’

In the Appalachian mountains of West Virginia, Malissa Helmandollar, a 46-year-old assistant in an optometrist’s office, regrets not taking her father’s guns away.

Her dad, Larry Dillon, loved to hunt. Even after a coal-mining accident left him paralyzed from the waist down at age 21, Dillon would shoot turkey, squirrel and deer from the seat of his four-wheeler. For as long as she could remember, her father kept a gun under the cushion of his wheelchair.

“He felt he couldn’t take care of us, or himself, without it,” she said.

In June 2017, when her father was 65, she began to notice strange behavior.

“He would see people crawling out of the washing machine,” she said. He forgot how to tell time. Sometimes he would just stare at his dinner plate “like he didn’t know what to do.”

Every night for weeks, Dillon grew scared that people were trying to break in and burn his house down, Helmandollar said. Dillon slept with a 9 mm semiautomatic Glock pistol at his nightstand in the double-wide trailer he shared with his wife, Sandy, in Princeton, W.Va.

Helmandollar made him an appointment with a neurologist, but he never made it to the doctor.


Dillon was firing at “intruders,” whom he apparently
hallucinated due to his dementia, when he killed
his wife, Sandy, on July 6, 2017.
(Courtesy of Malissa Helmandollar)

Five days before his appointment, on July 6, 2017, Helmandollar’s 9-year-old daughter was sleeping over at her Mamaw and Papaw’s house, as she loved to do. That evening, Helmandollar got a frantic call from her daughter.

Helmandollar sped to the house with her son. She found her stepmother, Sandy, dead in an armchair with several bullet wounds. Helmandollar heard her father tell police that he saw intruders breaking in to the house, so he grabbed his Glock and started shooting in the bedroom where his wife and granddaughter were watching TV.

But there had been no intruders that night. Dillon, who was deemed incompetent to stand trial for murder, was diagnosed with Lewy body dementia, a disease whose early symptoms can include vivid visual hallucinations.

Helmandollar said her father never understood what he had done. Before he died in April, he kept asking Helmandollar why his wife never visited him. She could never bring herself to tell him.

Meanwhile, Helmandollar’s daughter and 18-year-old son are in counseling for the trauma they experienced.

“It crossed my mind that maybe I should’ve taken the guns, and I didn’t,” Helmandollar said. “It’ll be a guilt that I’ll never ever get away from.”

How families of gun owners with dementia grapple with safety - YouTube

Belated diagnoses of dementia are too common, according to Dr. Melissa Henston, a geriatric psychologist in Denver who administers cognitive exams that can confirm impairment. She said many of the patients she sees have moderate or even severe dementia before being diagnosed.

“There’s denial and a false belief that a lot of cognitive problems are just normal for age,” she said. “These conversations that need to take place never take place until it’s too late.”

For Alzheimer’s disease and other dementias, there are limited treatments and no cure. About one-third of people with the disease become combative during the course of their illness, according to the Alzheimer’s Association. And more than 20 percent who develop dementia become violent toward their caretakers, a 2014 study showed.

Advocates have long warned patients and families about the potential risk of guns, said Beth Kallmyer, the Alzheimer’s Association vice president of care and support.

“The reality is, there’s no way to know who’s at risk for becoming agitated or even violent,” she said.

 

‘We Need To Pay More Attention’

In Minnesota, Sharon Van Leer, the 70-year-old director of diversity and inclusion at Mitchell Hamline School of Law, said she never would have predicted the phone call she got from police nearly three years ago.

Her father, Kenneth Bowser, a 90-year-old Army veteran and retired postal worker, had been living for many years with his oldest son, Larry, 65, in the St. Paul suburb of Maplewood.

At 5:30 p.m. on Sept. 12, 2015, Kenneth Bowser dialed 911.


Kenneth Bowser (center) visits with (from left) grandchildren Tonya Cotton and Mark Cotton and daughters Sharon Van Leer and Janet Bowser at a locked forensic nursing home in St. Peter, Minn., in 2016. He was sent to the home after he fatally shot his son and caretaker, Larry, in 2015, and was deemed unfit to stand trial because of his dementia. (Courtesy of Sharon Van Leer)

“Who is bothering you?” the dispatcher asked him, according to a transcript of the call.

“My oldest son, oldest son and I shot him, I shot him,” Bowser replied. “He’s laying there dead, dead.”

“Where is the gun?” the dispatcher asked.

“The gun is in my hand,” Bowser said.

Van Leer said she believes her father never intended to be violent: “Daddy was never like that.”

In the 911 call, Bowser appears confused. “I’m 70 — uh, 100 — 91 years old,” he said. “I’m paralyzed on one side.”

Bowser, who had not been diagnosed with dementia before the shooting, was confirmed to have Alzheimer’s and deemed not competent to stand trial.

Now Van Leer drives 90 minutes most Sundays to visit her 93-year-old father in a locked, state-run nursing home where he’s set to spend the rest of his life. Staff wheel him out to a windowless visitation room, where Van Leer and her sister spoon-feed him nutrition shakes and give him back rubs.

Van Leer said she had noticed some signs of decline before the shooting — he would leave bacon on the stove and burn it, or forget where he put his cigars. But because she did not live with him, she said, she didn’t realize how far his dementia had progressed.

“We need to pay more attention, as our parents get older, to the changes,” Van Leer said. “They can disguise it really well.”

Removing guns from the home is the best way to prevent violence, the Alzheimer’s Association and other experts advise. But Dr. Diana Kerwin, director of the Texas Alzheimer’s and Memory Disorders program at Texas Health, said that’s not the answer for all families.

“I don’t do a blanket ‘guns are bad, you can’t have guns in the home,’” she said.

Instead, she advocates storing guns safely — locked up, unloaded, with the ammunition kept separate from the guns. Firearms can also be disabled or, in some cases, replaced with a decoy, although that raises the risk of them being mistaken for a real weapon in an emergency.

“We had one patient with a gun with rubber bands that he would shoot and he was fine with that,” Kerwin said. “He was used to shooting varmints. You try to help them maintain the lifestyle they always had.”

  Hair-Trigger Tempers

Families walk a fine line, balancing independence with safety.

Christal Collins, a 50-year-old massage therapist in South Carolina, never got along with her dad. He beat her and her mother before the couple divorced, she said. But when he nearly died from spinal..

Read Full Article
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

I am a health psychology doctoral student at Walden University. Are you (or someone you know) a bereaved hospice caregiver who provided unpaid home- or hospital-based hospice care for a loved one? If the answer is yes, you are invited to participate in an important positive psychological study examining prayer and personal growth. The purpose of the study is to better understand how prayer coping functions can positively influence personal growth in response to stressful life circumstances such as hospice caregiving.

If you participate in this research, you will be asked to complete a personal profile questionnaire and two surveys, and all three parts may take approximately 20-30 minutes to complete. This study has been approved by Walden University’s Institutional Review Board (IRB).

Please follow the link https://www.surveymonkey.com/r/HospiceCaregiving to participate in this important research. Thank you! Nicole Fortin Santoro

 

Read Full Article
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

Welcome!

I invite you to participate in the research study I am conducting under the supervision of Dr. Erlene Rosowsky, PsyD at William James College.

The purpose of our study is to collect data from the perspective of family caregivers to identify changes in the behavior of elderly adults who have been prescribed opioid medication.  The data collect will be used to create a screening tool to help identify elderly adults who are at risk of future prescription opioid misuse. If you are over 18 and are or have been providing care to an elderly family member who was or has been prescribed opioid medications, you may be eligible to participate!

Participants will be given the chance to enter into a raffle with a prize of a $50 Amazon gift card.  

We will not collect individual-­identifiable information about you or the family member you care for during this study.

You may contact the principal investigator, Dr. Erlene Rosowsky at Erlene_Rosowsky@williamjames.edu or the primary contact or lead researcher, Andrew McRitchie at andrew_mcritchie@williamjames.edu

Please click the link below for more information or to take the survey:

https://williamjames.co1.qualtrics.com/jfe/form/SV_4Zr5MBvPnBZihal

Thank you very much in advance for your consideration.

 

Read Full Article
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 
The third in a series of three caregiver portraits
in honor of FCA’s 40th Anniversary

“… When I can muster enough energy, while listening to music from her era we sing, dance a little, and I frequently ask her questions that elicit memories of her past. It is elating to hear her recall them, often with a smile.”

While Jasmin Hall is well aware of the frustrations and stresses of caring for someone with Alzheimer’s, she also has taken the initiative to explore a range of resources available to her as she cares for her mother. That help, along with finding joy in the small moments, has been invaluable in her caregiving journey, which she describes below.

Seven years ago, at the threshold of my desired career advancement as a journalist/ community organizer, I returned home because my 93-year-old mother was diagnosed with early-stage Alzheimer’s.

Undoubtedly, the diagnosis and its progressive stage(s) were devastating in what it means for her as a still-active woman. Likewise, thoughts of the potential changes and impact the diagnosis would have on my life, career, and culture were equally alarming.  

As I was single, childless, and the youngest of my parents’ four children, my life circumstances were an indication that I would be the primary caregiver. With the death of my father, my brother, and a sister, and with my other sister suffering from a chronic illness, I am my mother’s full-time caregiver.

Caregiving in my mid-50s is exasperating. Being unemployed, as well as living with my parent, is utterly frightening!

Without a doubt, caregiving is, for me, a major stressor. And yet, it has its rewards.

Because my mother’s income is slightly over the In-Home Support-Services (IHSS) eligibility requirement, I am an unpaid caregiver. After monthly bills, meds, and personal hygiene products, we cannot afford to pay someone for respite. Therefore, the ongoing daily care, its longevity, Alzheimer’s disease-related symptoms such as repetition and disorientation, are ongoing stresses which have affected my eating habits (or lack of), caused brain fog, perpetual fatigue, and other health-related issues such as heart palpitation(s), weight gain, and overall irritability.

Further, I’m unable to go for my formerly sacred ritual morning walks, and this has impaired my desire to exercise, entertain, engage with friends and loved ones, advocate for nonprofits I regard, or attend cultural/art life-enrichment activities I was regularly accustomed to.

Painting the town often included taking my mother. Before, and early in her diagnosis, we would mingle monthly to catch a jazz set, dance at the senior center, walk in the park or at the beach, take a brain fitness course, see a play, etc. Unfortunately, participating in fun activities has literally halted, although it would enhance our lives!

Places such as senior centers that offer life-enrichment activities require that folks with dementia-related illness be accompanied by someone, and day centers are often too costly or out of reasonable proximity. Therefore, I opt to stay home rather than prepare us for the long journey and/or use the gas to travel across town or to another city.

Nevertheless, I feel I am blessed, and caregiving for my mother has its rewards.

Despite my mother’s severely arthritic knee, she is mostly ambulatory, overall manages her toileting, follows prompting well and can often engage in lucid conversation. When she fell and had hip surgery a few years ago, many of the doctors commented that her overall health was otherwise excellent and complimented me for taking good care of her. One doctor said the reason she is doing well is because of me. Another time, while visiting a friend in the hospital, one of the staff mentioned that my mother looked happy, and she could tell because in her work she encountered many sad seniors!

It is heartwarming to hear my mother say, “You’re nice to me,” or “The meal was delicious,” or “Thank you, it feels good,” when I rub her knee with warm oil. Often when among family or friends, she asks or looks for me. She often wants me to lie in bed with her, yet I seldom do, for my need of some solitude and stillness. Other times, when I can muster enough energy, while listening to music from her era we sing, dance a little, and I frequently ask her questions that elicit memories of her past. It is elating to hear her recall them, often with a smile.

I discovered Family Caregiver Alliance (FCA) from a flier during a much desired, rare, and overdue visit to a library. Upon contacting family consultant Jo McCord, she immediately returned my call and scheduled a home visit. Shortly after, without bureaucracy, our family received direct support services.* The ease in conducting business was just as important as receiving the services!

Being a recipient of an FCA respite grant allowed me to enjoy simple pleasures, like sitting under a tree and visiting a library. It is an invaluable direct service, just as the winter and summer Camps for Caring are. Corresponding with education coordinator Calvin Hu regarding my mama’s attending camp was also a positive experience.

Having access to free webinars and receiving the monthly e-newsletter are awesome education/information resources!  For example, this month’s article on how to engage the care recipient in conversation is pertinent and practical information I can use and share with family, friends, and loved ones. Also, as a political junkie, receiving policy information and the ability to partake in campaign advocacy and/or organizing effort(s) from home is absolutely a fantastic resource.  

My fellow caregivers, we too are fantastic—even fabulous! And as we share the unique experience of being entrusted the care of another and traveling this sometimes troubling terrain, I often listen to gospel singer William Becton’s euphonic lyrics: “Stay strong while we’re going through.” I admire you, and I hearten you, as the song is appropriately entitled, “Be Encouraged.”
   
According to Alzheimers.net, approximately 5.3 million Americans are living with Alzheimer’s and it’s projected that by 2050 the number will rise to 16 million. With these alarming statistics, we need alternative living situations where family or other care providers and care staff can live on premises with their loved ones (who have the disease). We also need many more community-based organizations whose mission is to coordinate the care of the recipient and caregiver as a joint “wrap-around” service and resource. Additionally, having ample low-cost day and senior centers throughout neighborhoods that explicitly serve the memory-care population is a must!
 
As a woman with no children and very few relatives in California, if I am unfortunately diagnosed with Alzheimer’s or a related dementia I pray that I have planted plentiful seeds to stir the spiritual harvest of universal karma that God will send someone to reach out and embrace me as I have tried to do for my lovely mother and as Family Caregiver Alliance has done for us!

* Residents of the San Francisco Bay Area may be eligible to participate in special caregiver programs, including legal consultation, support services, educational programs, and limited respite assistance. Please visit and join FCA CareJourney or call (415) 434-3388 for more information.

 

Date: 
Tuesday, May 1, 2018
Read Full Article
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

Irritable. Aggressive. Agitated. Do these words describe someone you know with Alzheimer’s disease?
If so, the ADVANCE study may be an option. Visit www.ADVANCEClinicalStudy.com to find more
information and see if you qualify.

Forty-five percent (45%) of patients with Alzheimer’s disease suffer from agitation. The ADVANCE Study
is evaluating an investigational medication to treat the symptoms of agitation (e.g., aggression,
irritability, emotional distress). This research study is enrolling individuals between 65 to 90 years old
who have been diagnosed with Alzheimer’s disease and are experiencing symptoms of agitation (e.g.,
aggression, irritability, emotional distress) to take part in the ADVANCE Study.
Those who qualify and participate will receive all study-related care at no cost, including study
medication and regular visits with doctors who are experienced in Alzheimer’s disease. Participants will
also have the opportunity to potentially help future Alzheimer’s research and treatment.

Visit www.ADVANCEClinicalStudy.com to find out if your loved one may qualify.

 

Read Full Article
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

Do you care for a service member or veteran who had a TBI after October 2001 while serving in the military? If so, you may be eligible to participate in a study requested by Congress. The study is currently recruiting family members, friends, or significant others who help a service member or veteran who had a traumatic brain injury after October 2001 while serving in the military. Help can include assistance with any day to day activity such as dressing, managing emotions, personality changes, anger/irritability, housework, remembering things, taking medications, managing money, providing financial assistance, running errands, shopping, transportation, or preparing meals. If you or someone you know may be interested, please call (855) 821-1469, or email caregiver.study@dvbic.org.

Read Full Article
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 
The second in a series of three caregiver portraits
in honor of FCA’s 40th Anniversary

“I have been a care provider for over 24 years and when I look back at all I have accomplished when it came to giving hope to those who were sick/critically ill, those who’d felt helpless, my soul is full with gratitude!”

Dette cares for people both professionally and personally. It is, she says, “what I have been called to do.” We recently posed some questions to her about her caregiving journey—the challenges and the triumphs—and we share her inspiring responses, below.

Tell us a little about your background and your current caregiving situation.


“I gave him a GOLDEN party
last year for his 77th birthday
and I haven’t seen him this
happy in years!”

I am actively and heavily involved in the quality care of my 77-year-old father. Last year, my father had to undergo three major surgeries, back-to-back, for amputation of his right leg. My father, who has been a diabetic for over 20 years, was one of those stubborn individuals who decided he did not want to take the medications that his PCP (Primary Care Physician) prescribed. He worried about the side effects with some of the meds. Yet, every time I took him back and forth to his PCP, his sugar levels were at death levels! Not only does he have issues being diabetic, but he has a heart condition, he had issues with his kidney count going up and down, and more.

The case managers also stated that he may be showing signs of mild dementia. Being that we are Christians, my father and I started to “rebuke" this claim in the name of Jesus! Sure, we know that dementia is on the rise amongst the elderly, but this was one disease that I could not really think about with all of his other health issues. 

Despite all that my father has had to endure, there was really no one "solid" in my family who would step up besides me. I have been a single mother since the age of 16. I can recall having to grow up at last and tackle this unknown world all on my own with my daughter back then. I had been a hoop star in high school, and this—my having a child—broke my father’s heart. This led to a distant relationship between him and me until I got older.



Then four years after my daughter’s birth, I just knew that I found my future husband ... but I was wrong. I got pregnant and found myself once again a single mother. This time, though, I had a huge shock, as my son Elijah was born prematurely. He only weighed one pound, 10 ounces. I was working, going to school, dealing with his father, and stressed out.

I can say now that my son Elijah has very much overcome. He is strong, healthy, and wise beyond his days. He is 24, but he is developmentally delayed, nonvocal or says a few words, and he has been my biggest responsibility ever since he was born. My daughter is now 28 and on her own.

So, with all that has been going on with my father and his health issues over the last 20 years, I found myself the only one in my family who would “always” be his backbone and care provider. Some said, “I can’t do it if I can’t get paid!” (Yes, even family ... sad, but true!) Not to mention, for the last 10 years I worked positions in the healthcare field where I was a contractor. There were times where these organizations had budget cuts, and contractors like me would be the first to get laid off. Then, I would use this time off and jump back into aiding my father when others just wouldn’t help.

But I have strong faith in what it means to serve God, and I feel like this is what God has called me to do. I went to work, cared for and nurtured my special blessed son Elijah, took care of my father and others who called on me to provide resources or care for them.  At one point, I took on caring for my sick father, my close friend who had leukemia and passed away five years ago, and my son Elijah. Yes, I was able to care for them all. 

Let me say this: My labor was visible to so many people who can vouch for the level of compassion, care, and support that I offer to those who were dear to my heart and who needed me. I have been a care provider for over 24 years, and when I look back at all I have accomplished when it came to giving hope to those who were sick/critically ill, those who’d felt helpless, my soul is full with gratitude!

I’m so thankful that God chose me to be right there to let them know that there is light at the end of the tunnel if you just hold on. Fight the good fight! Despite what it may look like, there is HOPE in hopeless situations. Just put faith over fear and rest assured that joy will come tomorrow.

I don’t regret anything that I’ve had to do when it came to assisting in my father’s care in these last two years, after his amputation. I'm here to tell you that God is keeping him! When you see my father, you are looking at a miracle! I recall when he was wheelchair-bound last year, but get this: he just received his second, newer prosthetic leg and he has been up and walking on a walker for over a year and half. What an awesome blessing!

“Jo became my ear of compassion when I needed to vent about all that I had to deal with when it came to father. She was very professional, patient, and had awesome knowledge of what I was dealing with.  She was just warm and not once did she judge.”
Tell us about the stresses and/or rewards of your caregiving situation.

I have to say there was a strain on my finances when it came to paying for my father’s prescriptions, buying food for him, and paying others to give him rides to his appointments when I could not take him. But, Medicare helped. I was able to get one of the case managers to help with lowering his prescription cost. The other strain was lifting his wheelchair in my car every time he had appointments and the chairs are not light! He had appointments three to four times a week when he came out of the hospital.

When I think about the rewards, there is one that is priceless. I call that reward Love! That true love in your heart in knowing that your good deeds will never be forgotten by one whom you showed love, care, respect, patience, compassion, strength, and laughter. I don’t care if they don’t say it much or show it, but in their hearts, trust and believe that they are thankful that you were there.

How did you discover Family Caregiver Alliance?

I was given a resource sheet from one of the case managers who came out to see my dad, and who mentioned that I should reach out to Family Caregiver Alliance. At first, I just assumed this organization was not going to help me. But get this, I was incorrect and was contacted by one of their representatives in that same week, and that rep was named Jo. :-)

Jo became my ear of compassion when I needed to vent about all that I had to deal with when it came to father. She was very professional, patient, and had awesome knowledge of what I was dealing with. She was just warm and not once did she judge.

I really felt so much better when I spoke to her about my father’s heath conditions. Then, she stated she would check in on me later to see how things are going after she was able to provide me with a financial blessing, and ... she did follow-up! This told me that Jo and Family Caregiver Alliance care about the service and care providers they help.

What caregiving services or resources have been most useful or helpful to you?

I was able to get some financial help*, and Jo explained resources she thought I should look into as my father gets older, such as understanding the signs of dementia. She let me know the sooner I get on it, the better.

If you could give other caregivers advice, what would it be?

Here’s what I would tell other care providers: Whether you are a friend, family, neighbor, or co-worker, being a caregiver means that you’re willing to help out of the kindness of your heart! To be a superb caregiver, you have to have patience, compassion, time, and experience in what it means to care for those who are battling a critical illness or setback in their health. You can’t be one who is frustrated or who comes around them with hopeless eyes and hopeless talk!

Trust and believe that those who are sick can tell if you are there to help them get better. 

You can’t have a negative vibe around those who already feel like they are not going to get well. You have to bring positive vibes and a real smile of love when you are in their circle. Don’t say they’re “sick” with this or that. Switch it up and tell them that they are “battling” this and they will overcome! Teach them to speak LIFE. I don’t care what the doctors may say. ...

While we thank the doctors and nurses for their knowledge, I believe in the power of prayer, no matter your denomination or beliefs. It’s never over until God says it’s over! So, in all situations, you continue to show them LIFE! Dress them up, put on their favorite music, dance with them even if they can’t walk, give them hope that someday they will get up! If they can’t go outside, bring outside to them. You can’t know hope if you don’t have a heart!

Lastly, if you’re going to do something out of your heart, don’t do it with the expectation of getting something in return. God sees your works and when all is said and done, your blessings will show up—blessings that you won’t even have room to receive.

And I just want to add: Thank you Family Caregiver Alliance for being there when I needed your services. I’m so looking forward to other future endeavors and services that your organization has to offer.

* Residents of the San Francisco Bay Area may be eligible to participate in special caregiver programs, including legal consultation, support services, educational programs, and limited respite assistance. Please visit and join FCA CareJourney or call (415) 434-3388 for more information.

 

 

 

Date: 
Monday, February 26, 2018
Read Full Article
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 
The second in a series of three caregiver portraits
in honor of FCA’s 40th Anniversary

“I have been a care provider for over 24 years and when I look back at all I have accomplished when it came to giving hope to those who were sick/critically ill, those who’d felt helpless, my soul is full with gratitude!”

Claudette Farley cares for people both professionally and personally. It is, she says, “what I have been called to do.” We recently posed some questions to her about her caregiving journey—the challenges and the triumphs—and we share her inspiring responses, below.

Tell us a little about your background and your current caregiving situation.


“I gave him a GOLDEN party
last year for his 77th birthday
and I haven’t seen him this
happy in years!”

I am actively and heavily involved in the quality care of my 77-year-old father. Last year, my father had to undergo three major surgeries, back-to-back, for amputation of his right leg. My father, who has been a diabetic for over 20 years, was one of those stubborn individuals who decided he did not want to take the medications that his PCP (Primary Care Physician) prescribed. He worried about the side effects with some of the meds. Yet, every time I took him back and forth to his PCP, his sugar levels were at death levels! Not only does he have issues being diabetic, but he has a heart condition, he had issues with his kidney count going up and down, and more.

The case managers also stated that he may be showing signs of mild dementia. Being that we are Christians, my father and I started to “rebuke" this claim in the name of Jesus! Sure, we know that dementia is on the rise amongst the elderly, but this was one disease that I could not really think about with all of his other health issues. 

Despite all that my father has had to endure, there was really no one "solid" in my family who would step up besides me. I have been a single mother since the age of 16. I can recall having to grow up at last and tackle this unknown world all on my own with my daughter back then. I had been a hoop star in high school, and this—my having a child—broke my father’s heart. This led to a distant relationship between him and me until I got older.



Then four years after my daughter’s birth, I just knew that I found my future husband ... but I was wrong. I got pregnant and found myself once again a single mother. This time, though, I had a huge shock, as my son Elijah was born prematurely. He only weighed one pound, 10 ounces. I was working, going to school, dealing with his father, and stressed out.

I can say now that my son Elijah has very much overcome. He is strong, healthy, and wise beyond his days. He is 24, but he is developmentally delayed, nonvocal or says a few words, and he has been my biggest responsibility ever since he was born. My daughter is now 28 and on her own.

So, with all that has been going on with my father and his health issues over the last 20 years, I found myself the only one in my family who would “always” be his backbone and care provider. Some said, “I can’t do it if I can’t get paid!” (Yes, even family ... sad, but true!) Not to mention, for the last 10 years I worked positions in the healthcare field where I was a contractor. There were times where these organizations had budget cuts, and contractors like me would be the first to get laid off. Then, I would use this time off and jump back into aiding my father when others just wouldn’t help.

But I have strong faith in what it means to serve God, and I feel like this is what God has called me to do. I went to work, cared for and nurtured my special blessed son Elijah, took care of my father and others who called on me to provide resources or care for them.  At one point, I took on caring for my sick father, my close friend who had leukemia and passed away five years ago, and my son Elijah. Yes, I was able to care for them all. 

Let me say this: My labor was visible to so many people who can vouch for the level of compassion, care, and support that I offer to those who were dear to my heart and who needed me. I have been a care provider for over 24 years, and when I look back at all I have accomplished when it came to giving hope to those who were sick/critically ill, those who’d felt helpless, my soul is full with gratitude!

I’m so thankful that God chose me to be right there to let them know that there is light at the end of the tunnel if you just hold on. Fight the good fight! Despite what it may look like, there is HOPE in hopeless situations. Just put faith over fear and rest assured that joy will come tomorrow.

I don’t regret anything that I’ve had to do when it came to assisting in my father’s care in these last two years, after his amputation. I'm here to tell you that God is keeping him! When you see my father, you are looking at a miracle! I recall when he was wheelchair-bound last year, but get this: he just received his second, newer prosthetic leg and he has been up and walking on a walker for over a year and half. What an awesome blessing!

“Jo became my ear of compassion when I needed to vent about all that I had to deal with when it came to father. She was very professional, patient, and had awesome knowledge of what I was dealing with.  She was just warm and not once did she judge.”
Tell us about the stresses and/or rewards of your caregiving situation.

I have to say there was a strain on my finances when it came to paying for my father’s prescriptions, buying food for him, and paying others to give him rides to his appointments when I could not take him. But, Medicare helped. I was able to get one of the case managers to help with lowering his prescription cost. The other strain was lifting his wheelchair in my car every time he had appointments and the chairs are not light! He had appointments three to four times a week when he came out of the hospital.

When I think about the rewards, there is one that is priceless. I call that reward Love! That true love in your heart in knowing that your good deeds will never be forgotten by one whom you showed love, care, respect, patience, compassion, strength, and laughter. I don’t care if they don’t say it much or show it, but in their hearts, trust and believe that they are thankful that you were there.

How did you discover Family Caregiver Alliance?

I was given a resource sheet from one of the case managers who came out to see my dad, and who mentioned that I should reach out to Family Caregiver Alliance. At first, I just assumed this organization was not going to help me. But get this, I was incorrect and was contacted by one of their representatives in that same week, and that rep was named Jo. :-)

Jo became my ear of compassion when I needed to vent about all that I had to deal with when it came to father. She was very professional, patient, and had awesome knowledge of what I was dealing with. She was just warm and not once did she judge.

I really felt so much better when I spoke to her about my father’s heath conditions. Then, she stated she would check in on me later to see how things are going after she was able to provide me with a financial blessing, and ... she did follow-up! This told me that Jo and Family Caregiver Alliance care about the service and care providers they help.

What caregiving services or resources have been most useful or helpful to you?

I was able to get some financial help*, and Jo explained resources she thought I should look into as my father gets older, such as understanding the signs of dementia. She let me know the sooner I get on it, the better.

If you could give other caregivers advice, what would it be?

Here’s what I would tell other care providers: Whether you are a friend, family, neighbor, or co-worker, being a caregiver means that you’re willing to help out of the kindness of your heart! To be a superb caregiver, you have to have patience, compassion, time, and experience in what it means to care for those who are battling a critical illness or setback in their health. You can’t be one who is frustrated or who comes around them with hopeless eyes and hopeless talk!

Trust and believe that those who are sick can tell if you are there to help them get better. 

You can’t have a negative vibe around those who already feel like they are not going to get well. You have to bring positive vibes and a real smile of love when you are in their circle. Don’t say they’re “sick” with this or that. Switch it up and tell them that they are “battling” this and they will overcome! Teach them to speak LIFE. I don’t care what the doctors may say. ...

While we thank the doctors and nurses for their knowledge, I believe in the power of prayer, no matter your denomination or beliefs. It’s never over until God says it’s over! So, in all situations, you continue to show them LIFE! Dress them up, put on their favorite music, dance with them even if they can’t walk, give them hope that someday they will get up! If they can’t go outside, bring outside to them. You can’t know hope if you don’t have a heart!

Lastly, if you’re going to do something out of your heart, don’t do it with the expectation of getting something in return. God sees your works and when all is said and done, your blessings will show up—blessings that you won’t even have room to receive.

And I just want to add: Thank you Family Caregiver Alliance for being there when I needed your services. I’m so looking forward to other future endeavors and services that your organization has to offer.

* Residents of the San Francisco Bay Area may be eligible to participate in special caregiver programs, including legal consultation, support services, educational programs, and limited respite assistance. Please visit and join FCA CareJourney or call (415) 434-3388 for more information.

 

 

 

Date: 
Monday, February 26, 2018
Read Full Article
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 
The first in a series of three caregiver portraits in honor of FCA’s 40th Anniversary

“A wise friend once told me, ‘your mom gave you the gift of life ... now this is your gift to her,’ and that always stayed with me.”

Sometimes, becoming a caregiver is a gradual process. Families or friends slowly take on more and more responsibility for a loved one and spend increasing amounts of time and energy providing care.



For Selene, however, a Bay Area 48-year-old married mother of two, the transition was sudden, with no time to plan for or absorb her new role. She unexpectedly became part of the “Sandwich Generation.” In 2008, her 70-year-old mother Donna suffered a devastating stroke. Her mom was paralyzed, unable to speak clearly, and cognitively impaired. She could not live on her own.

“She came to live with us—we did not want to put her into a nursing home,” Selene recalls. “We felt that she would be happier surrounded by her family and pets. It is also part of my culture (Chinese American) that we don’t put our parents in nursing homes, at least until you absolutely run out of means to provide adequate care. We took care of my mom for nine years, but it was very challenging with work, kids’ school and sports activities, pets, etc. At the time she first came to stay with us, our kids were eight and three years old.”

There is no question for the family that there were immense rewards in providing care for Donna. “We were able to spend the past nine years with her! Her grandchildren got to grow up with their grandmother and know her a little better. Even though she was not ambulatory, emotive, or talkative, her eyes always expressed a deep understanding and appreciation. That is invaluable to us. A wise friend once told me, ‘your mom gave you the gift of life ... now this is your gift to her,’ and that always stayed with me.”

But, says Selene, “I will be honest, it seemed stressful much of the time. There were moments of some calm, but in many ways, I felt … like I was tethered. It was difficult to go anywhere as a family, and my husband and I missed a lot of important events because someone always needed to supervise my mom. We brought my mom along with us whenever we could, but trying to figure out how to get coverage and a break—not to mention the finances for covering that—it was always a challenge.”

As she tried to manage her caregiving role and still handle all her other responsibilities, Selene reached out to FCA for help and support. “A social worker told me about resources because she saw that I was spread very thin, and usually on the verge of burnout. Just being able to speak with specialists who truly understood what we were going through was highly beneficial,” Selene says. FCA Family Consultant Christina Irving “has been a lifesaver to our family during this time. We were provided opportunities where we could seek respite, and have time off from caregiving now and then. My mom was able to go on retreats with other people who were in situations similar to hers. She had a social outlet through this.”

But in May of 2017, she says, “we finally reached a point where we knew in our hearts that we could not provide the care that my mom needed. I was diagnosed with breast cancer and was undergoing chemotherapy. My mom was having respiratory issues, and we were dealing with teenager issues. That was our sign that it was finally time to stop being caregivers because we had to care for ourselves and our children.” It was necessary to place Donna in a care facility.

Over the years of home care, Selene’s experience taught her a lot, and she offers important advice for other caregivers: “Take care of yourself first. You can’t pour from an empty cup. When you start feeling that you are getting burned out, ask for help!! There are resources like Family Caregiver Alliance.”

“I am very grateful for the support that FCA has provided me. We would not have lasted caregiving for nine years if it weren’t for this agency.”

 

 

 

Date: 
Tuesday, February 6, 2018
Read Full Article
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

Greetings!

I invite you to participate in a research study I am conducting under the direction of Dr. Richard Lanthier, Ph.D. in the Graduate School of Education and Human Development at the George Washington University.

The purpose of this study is to examine the association between caregiver stress and symptoms of depression in adult mental health caregivers who:

  • are aged 18 or above
  • are living in the United States
  • have provided unpaid care at any time in the last 12 months for a relative with a mental health issue and an accompanying functional impairment (the mental health condition should be primary to the secondary physical condition)
  • have helped with arranging or providing transportation, shopping, housework, preparing meals, managing finances, giving medicines or injections, or arranging services
  • and/or have helped their relative with bathing or showering, getting to and from the toilet, get out of beds or chairs, dressing, dealing with incontinence or diapers, or feeding them

Your participation may provide you with a great opportunity to share your caregiving journey, but it may also bring us a better understanding of your experience. Your participation has the potential to positively impact other caregivers, prospective caregivers, and others.

We will not collect individual-­identifiable information about you or someone you care for during this study.

You may contact the principal investigator, Dr. Richard Lanthier at lanthier@gwu.edu or the primary contact or lead researcher, Yoonsuh Moh at yoonsuh@gwmail.gwu.edu

Please click the link below for more information or to take the survey:
https://survey.az1.qualtrics.com/jfe/form/SV_4H0c4EjGbyKNyWV

Thank you very much in advance for your consideration.

Read Full Article

Read for later

Articles marked as Favorite are saved for later viewing.
close
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

Separate tags by commas
To access this feature, please upgrade your account.
Start your free month
Free Preview