What a fantastic exercise in developing empathy and understanding of the challenges facing those going through the end of life phase. I believe this training could also be adapted for those caring for those with dementia to better understand how one might feel like they are losing pieces of their identity to the disease.
From a fellow blogger training to be a hospice volunteer:
Yesterday, in a training for upcoming hospice volunteering, I was asked the following: Who are the 4 most important people in your life? What are your 4 most important possessions? What are your 4 top beliefs and/or aspirations in life? What are your favorite 4 activities to do? What are your 4 greatest comforts? I […]Hospice Training: A Change in Perspective — The Day Between
Tag Archives: dementia
Those of us who have utilized home health care for our loved ones are well aware of the staffing challenges in the industry. The pandemic intensified the problem and has moved the issue into the national spotlight. Will we find solutions as the demand for home health care is likely to increase in the coming years?
My father’s journey with Alzheimer’s ended a decade ago. Like the woman interviewed by the New York Times for a recent article on the shortage of home care options, my mother cared for my father at home for as long as she could. Her preference would have been to care for him at home, with adequate outside support. There were sporadic home health care visits to address physical health issues, but the bulk of the care fell on my mother. My father ended up being hospitalized for a medical condition which required surgery and was not physically well enough at the time to be released home. He was placed in a memory care center an hour-and-a-half drive away from my parents’ home. It was the closest facility with an opening. The distance put a huge strain on my mother, who didn’t have personal transportation and had to take a bus to visit my father.
My mother used home health care while she was recovering from cancer, but in her rural community, staffing shortages and high turnover meant limited visits and the bulk of daily care falling on my shoulders. I had to quit my job in order to provide that care, and while I’m grateful I was able to be there for my mother, it created a significant financial burden that I’m still trying to pay off several years after her death.
Most people’s preference is to age in place at home, but people are in for a rude awakening if we don’t adequately address the problems within the industry. While staffing has rebounded to pre-pandemic levels for the most part, demand continues to grow. According to the New York Times, “More than 800,000 older and disabled people who qualify for Medicaid are on state waiting lists for home care.”
That’s a lot of people, and the ripple effect that it causes for family members who have to drastically alter their lives to fill in the care gaps cannot be ignored. There is a lot of talk about “elevating the profession” and that is long overdue. Better pay, better benefits, a career path that offers further training or certifications would help attract and maintain staff. Adjusting our immigration policy to welcome those who want to work in the care industry is another option being discussed. At some point soon, we must move beyond just mere talk and take action.
In the meantime, families are left scrambling and our loved ones in need of care suffer.
What would you do if you receiving a notice that the nursing home where your loved one resides is closing in a few days? It’s a nightmare situation and a case is unfolding right now in metro Atlanta.
In the case of Tranquil Gardens Assisted Living and Memory Care, residents and their families were given just three days’ notice that they must vacate the premises due to foreclosure on the property. The facility housed those with dementia and also provided hospice care, and families are outraged that their loved ones in fragile health are being kicked out of their homes and forced to find new accommodations with such little notice. By law, facilities are supposed to provide at least a 30-day notice.
In a statement, the owner cited the pandemic’s financial toll as a reason for the sudden shuttering of the facility. The statement did not explain why there was not an effort to provide a more reasonable notice, citing “a domino effect of things out of our control transpired at the end that led to a very heartbreaking and rapid end to the facility.”
In addition to the residents losing their homes, the employees of the facility are losing their jobs and may not even receive a final paycheck.
This terrible scenario may happen with more frequency in the months to come. A report in The 19th highlighted a recent survey by the American Health Care Association and the National Center for Assisted Living which found that only one-quarter of nursing home operators are confident they can keep their doors open for at least one year. “The cost to fight COVID-19, chronic underfunding of Medicaid and the number of patients dropping to record lows have led to the industry’s near collapse,” The 19th reported.
There are no quick fixes to the industry’s woes. It will require a mix of funding, better pay for care workers to address the workforce shortage and better transparency and accountability. In the meantime, if you have a loved one in a nursing home, you should consider putting together an action plan just in case you have to face a similar situation in which the facility suddenly closes.
“Right now, you may only feel the weight of its burden rather than the weight of its significance, but one day you will look back and realize everything you have learned from this experience.”
So true, can’t wait to read this book!The Story You Are Living Is Bigger Than You Know — Life, Love, and Alzheimer’s
Alzheimer’s was in the spotlight this week due to the FDA’s controversial decision to approve the drug aducanumab for treatment of the disease. I’ve closely followed the debate and can understand why some hope this is the breakthrough drug we’ve all been waiting for while also agreeing with critics who question the FDA approval process for this drug due to the limited evidence of its effectiveness in trials. There’s also the hefty price tag to consider.
Choosing whether to take a medication or undergo a treatment is a personal decision that should be made with the consult of family and trusted physicians familiar with the individual’s case. Below I’ll go over some general takeaways to consider. If you know of someone who was in the trial I’d love to hear about their experience.
Target treatment group: Aducanumab has so far only been studied in people living with early Alzheimer’s disease and mild cognitive impairment (MCI) due to Alzheimer’s. The FDA approval will allow it to be prescribed to those at any stage of the disease.
How it works: Aducanumab targets the amyloid beta plaque in the brain with the goal of reducing the plaque buildup and slow the rate of cognitive and functional decline.
How effective is it? This is where the main controversy arises. Biogen, the maker of aducanumab, was only able to provide very modest evidence that the drug offers a tangible benefit. “The average degree of improvement on a 0-18 point cognitive scale was just 0.39 points relative to placebo, far smaller than the 1 or 2 point threshold typically used to define a clinically important difference,” according to the two physicians who wrote this Washington Post opinion piece. Trials of the drug were halted in 2019 because an analysis concluded the trials were unlikely to be successful in hitting their goals at completion. But months later, after analyzing a wider set of data and discovering the nominal improvement, Biogen announced it was seeking FDA approval of aducanumab, CNN reported. After an FDA panel voted overwhelmingly to not recommended that drug approval move forward, the FDA eventually greenlighted aducanumab.
The drug was granted Fast Track designation and approved using the accelerated approval pathway, which only requires a “reasonably likely to predict a clinical benefit to patients” and also requires a post-approval trial to verify that the “drug provides the expected clinical benefit.”
What are the side effects? The most common side effects of aducanumab were “headache, fall, diarrhea, and confusion/delirium/altered mental status/disorientation,” according to the FDA. Brain swelling was also reported by some trial participants.
How expensive is it? Very expensive. The drug is expected to cost $56,000 per year. Part of the expense is in how the drug must be delivered, via infusion every four weeks. There may also be expensive imaging tests required to begin treatment. While insurance companies are expected to pay for some of the cost, it is unclear how much Medicare will reimburse, CNN reported.
What are the general expectations? Those who take aducanumab may see modest improvements in cognitive functioning or see a reduction in the speed of decline in cognitive functioning. It’s important to note that while the drug may remove amyloid plaque from the brain, that doesn’t guarantee an improvement in cognitive functioning. Advocates see it as a treatment with potential, but not a cure. Aducanumab is the first drug to treat Alzheimer’s disease that the FDA has approved since 2003. It has been a long wait, and that is why the drug’s approval has been met with a mixture of hope and skepticism.
I had a strange experience this week that reminded me of one of my favorite stories in Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias. This collection also includes a story I wrote about my father called “French Toast.” The story that I find so delightful is “The Bird,” about a woman with Alzheimer’s who is living with her adult daughter. One late night the mother wakes her daughter up and announces that there is a bird in the house. The daughter is skeptical, as most dementia caregivers would be, because hallucinations and other visual disturbances are not uncommon. But it turns out that the woman with dementia is correct and there is a real bird fluttering around the house!
I’ve been hearing strange noises coming from the house alarm system. It was intermittent, maybe every few months or so, but the noise sounded somewhat like chirps or squeaks. Sometimes I wondered if I was imagining things, and felt silly for thinking about a creature being inside the alarm system. When the pandemic struck, I had a hole on the roof where rats got in repaired. Even after the rats were gone, I still heard the occasional weird noise from the alarm system. The alarm system continued to work fine, so I didn’t consider it a priority to fix, especially during the pandemic lockdown.
This week the security system had to be upgraded because it was using old 3G technology that is being phased out. I was on the fence about mentioning the sounds to the technician, on account he might think I’d lost my mind. I was shutting the back door on his request and about to mention the sounds when he removed the alarm console cover. He announced, “You’ve got lizards!”
Mystery solved! I’m still not sure how they got in from the outside but they were likely attracted to the warmth of the circuit board. The one in the photo was the larger one and a smaller companion slithered out as well. I’d be happy to let them back outside but haven’t seen them since the ordeal. My cat will probably spot them before I do. On the rare occasion I’ve seen one in the house prior to this incident, the cats would surround it but thankfully were more curious than in hunter mode.
Other than an amusing story, what I’m taking away from this is the same moral from the Chicken Soup for the Soul story. The daughter said how enlightening it was to put herself in her mother’s shoes, and imagine how it would feel to not be believed. I wondered if I was imagining things as well, and there is a relief when one receives validation. To be less automatically dismissive is a good lesson for all of us, especially when interacting with those with dementia.
UPDATE: The officers involved in the arrest of Karen Garner have been charged and arrested.
A second video in this case has been released, showing the police reaction back at the station. It is almost equally as disturbing. In my opinion, this isn’t a case of “gallows humor” used as a coping mechanism by those in law enforcement, health care, etc. who face daily traumas. As a journalist, I often find that dark humor in private exchanges can help buffer the pain of covering a terrible crime story. But laughing and boasting about injuring an older woman’s shoulder while making “pop” sound effects displays an utter lack of humanity and should make one unfit to serve in any role involving the public. Would any of these officers want their elder relatives treated and mocked in such a way? It also reinforces the urgent need for better training and accountability.
A case in Colorado involving the arrest of a 73-year-old woman with dementia for attempted shoplifting grabbed national headlines this week. It disturbed me personally because my father was in a similar situation. I believe many dementia caregivers fear this situation for their loved ones and we must do better as a community to protect those with dementia from ending up in this heartbreaking situation.
Karen Garner, 73, filed a lawsuit this week against the city of Loveland and its police officers. The incident took place in June 2020. Garner is accused of attempting to walk out of a Walmart with $14 worth of merchandise without paying. Walmart employees stopped her and were able to retrieve all items. According to the lawsuit, she offered to pay for the items at that point but the store declined, instead calling police to report the incident and offer the location in which Garner began walking. Store employees told police that the store had suffered no loss, according to the lawsuit and video of the arrest.
You can watch for yourself what happens next, as a police officer tracks down Garner. Warning: It is disturbing.
Garner is 5 feet tall and weighs 80 pounds. According to the lawsuit, her shoulder was dislocated during the arrest and she now requires assistance with daily tasks like bathing. She didn’t receive medical care until several hours later, though she complained of pain during the arrest. The criminal case against her was dropped by the district attorney’s office, while no disciplinary actions were taken against the officers until this week, when the lawsuit was filed and the video of the arrest went viral.
There is so much wrong here, and it starts way before the officers arrived. First and foremost is that America does a poor job in how it interacts with those who are mentally ill in the public sphere. I don’t know if Walmart has a blanket policy on calling police when minor incidents like this one happen in which a shoplifting attempt is thwarted, but this could have all been avoided if they had handled the situation internally. Ask if a family member can be called to pick her up and speak to them. Ban her from the store. Take a photo of her and post it in employee areas so staff know to be aware.
Police departments need better training in interacting with those with dementia and with mental health challenges in general. This arrest of Garner was a waste of law enforcement time and resources, and demonstrates the urgent need for engaged community policing.
And of course we need better resources for those with dementia. We don’t know Garner’s personal situation, if she was still attempting to live alone without regular supervision or if she wandered away. Both are common scenarios, and leave family members fearful for their loved one’s safety. With many adult day programs shut down due to COVID-19, there is likely an increase of those with dementia who feel bored and restless. While there are privacy concerns, offering identification that one has dementia could be helpful. The officer looked through Garner’s wallet about midway through the arrest. If there had been a card that said, “I have dementia. Please call this number for assistance,” the officers may have responded differently.
I thought about a similar incident with my father. I talk about the “burrito incident” in my book, The Reluctant Caregiver, and how it became a turning point in our family. He was at the stage of Alzheimer’s where his symptoms were becoming more apparent, but he still wanted to be independent. My mother sent him on an errand to pick up some items at a nearby convenience store, where they were regular customers. He picked up a couple of burritos and tried to walk out without paying. The clerk stopped him and my father got verbally agitated. Fortunately my mother was called instead of the cops and she hurried down to handle things. I believe my father would have ended up like Garner if the police had been called. Perhaps even worse.
None of this is easy. Police officers are not mental health experts, nor are store clerks. The pandemic has disrupted funding and access to community services. But it is clear in this particular case that no justice was served. I hope this case can demonstrate how broken our community services are for those with dementia and other mental health challenges and inspire solutions that are based in common sense and compassion.
Alzheimer’s Insights: Longer days ahead can affect different aspects of our physical and psychological health — L’Observateur
We will turn our clocks forward this coming weekend, officially at two a.m. on Sunday, March 14. Of course, no one does it at that precise time. The general practice is just to move clocks ahead an hour when you go to sleep Saturday night, and don’t forget the clock in your vehicle! For most of us, […]Alzheimer’s Insights: Longer days ahead can affect different aspects of our physical and psychological health — L’Observateur
While always a sobering overview, I believe it is important to review the annual analysis that the Alzheimer’s Association releases.
Some important takeaways:
- More than 6 millions Americans are living with Alzheimer’s
- Over 11 million Americans provide unpaid care for those with Alzheimer’s and other dementias
- 1 in 3 American seniors die with Alzheimer’s or other dementia
- This year, Alzheimer’s and other dementias will cost the nation $355 billion
- The value of the care unpaid Alzheimer’s caregivers provide is $257 billion
One other important statistic to note is the racial disparity in care. Discrimination in the health care setting can prevent or delay people getting the care they need. Half of Black Americans report such discrimination. Over 40 percent of Native Americans reported discrimination. Over a third of Hispanic and Asian Americans reported discrimination. I would also add to this the discrimination that women face in healthcare settings. Discrimination can take many forms, including a doctor not taking complaints of pain as seriously and assuming a symptom is emotional vs. physical in nature. I remember my own mother suffering at the hands of doctors who did not take her cancer pain seriously, instead assuming she was drug seeking.
As caregivers, we must be vocal and tireless advocates when faced with such discrimination. Don’t be afraid to ask for a different doctor if you are uncomfortable or dissatisfied with the care being provided. I’ve read many accounts from adult children who sought treatment for their elder parents with signs of dementia but the doctors shrugged off symptoms as the elder was able to present well for the duration of the appointment. Be persistent. While there is no miracle treatment for Alzheimer’s or other dementias, there are medications and treatments which may help in the earlier stages. That is why receiving a correct and timely diagnosis is crucial.
Plan ahead for your elder loved ones who live alone and wish to age in place. You will want to take your time in vetting care workers and finding one that is the right fit. Kay Bransford offers helpful tips on her blog.
Most of the individuals I work with that are still in their home want to stay there. The ongoing COVID issues have made many individuals and their families second guess community care. 472 more wordsFinding a Live-In Arrangement That Works — Dealing with Dementia