Tag Archives: caregivers

How to address elder abuse of family caregivers

While elder abuse is an important issue we must better address as a society, there is less open discussion about elders who abuse their family caregivers. But it is a real issue, with potentially devastating physical, mental, and emotional consequences for the caregiver. A mix of embarrassment, shame, and reluctance allows this issue to be kept hidden. But it is important for caregivers to share their stories and seek help when necessary.

I cam across a helpful article on this topic written by Carol Bradley Bursack of Minding Our Elders. She tells of a time when she faced nasty treatment from her mother when Bursack visited her at the nursing home where she resided. A nurse offered sage advice: skip a day of visitation. A day of respite offered Bursack the break she didn’t even realize she needed and helped clear the air with her mother, who was very pleasant on her next visit.

This made me think of a similar example from my own caregiving experience and how I handled it. As I write about extensively in my book, The Reluctant Caregiver, my mother and I were like oil and water together. We had opposite personalities and our differences only magnified as my mother dealt with a grueling recovery from cancer surgery and I became her live-in caregiver. I became responsible for managing her colostomy, which always involved some trial and error. When she developed a hernia, my mother’s discomfort yet decision to delay the necessary surgery only made her mood more foul. In the middle of the night she called out to me, letting me know her ostomy bag was leaking. This was an occasional occurrence and usually my mother was apologetic and grateful for my assistance. But not that night. She berated me, telling me I didn’t know what I was doing over and over. This despite the fact that she would not learn how to change the bag herself, which was the main reason I remained her live-in caregiver. I got the bag changed, walked away as she continued to yell at me, and went to my bedroom. I was angrier than I had ever been in my life. Rage shook my body. I knew I needed a break, and soon.

Respite care in a rural community is hard to come by, but fortunately, there was a resort hotel within short walking distance of my mother’s condo. I made a reservation online for the next night. The next morning, I was polite but cool to my mother, who tried to pretend nothing had happened. I told her I was spending the night at a hotel, and that it was the best thing for both of us. She put up a bit of fight but I could tell she knew she had crossed a line. I walked out that afternoon with zero regrets. If my mother had a medical need, she could call me and I would’ve been there in 10 minutes, so she was in no danger. My emotional well-being was in danger. I so enjoyed that night in the hotel. I got a good night’s sleep for the first time in months and felt refreshed and in a better state of mind upon returning to my mother’s place. While we still had our disagreements, she never again treated me the way she did that night. There are regrets I have about my mother’s care, but the decision I made that night to care for myself—I have no regrets at all.

Here are some tips on what to do if you are facing an abusive situation involving an elder relative:

  • Confide in a trusted source: Talk to someone about what you are facing. Ideally, it will be someone outside of your family unit, such as a friend, support group member, therapist, or pastor. Online forums can provide instant feedback. Sometimes we become so deeply involved in caregiving we get tunnel vision and have a hard time acknowledging the realities of the situation. We often want to make excuses for our loved ones who are abusive, but having a trusted sounding board can help you identify if you are in an abusive situation that needs outside assistance.
  • Set boundaries: It is easy to allow yourself to be taken advantage of by those you care for, out of guilt or sense of duty. But it is important to carve out time for your needs, otherwise you will suffer caregiver burnout. Elders who desire to age in place will need to understand that you will not be able to wait on them 24/7, and outside help may be necessary to attend to their needs. For elders in nursing homes, they should be encouraged to develop social relationships with fellow residents and staff instead of relying upon daily visits from a relative, which may be a burden for those juggling a job and childcare duties. If the abuse becomes overwhelming, it may require an extended separation.
  • Use respite care: If respite care is offered in your area, take advantage of those services! If not, seek options for informal respite care. This could be a friend, relative, church member, etc. who is willing and capable to spend time with your loved one while you take the afternoon or evening off to tend to your own needs. Even a few hours of respite, if taken regularly, can make a big difference.

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Caregiver concerns regarding the delta variant

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Those who have been following the coronavirus pandemic closely are likely not surprised that a concerning variant has emerged. This was one of the scenarios that worried infectious disease experts. Here is what caregivers should know about the delta variant:

What is different about the delta variant: It’s more transmissible, and is running rampant through America’s large swaths of unvaccinated populations. The debate is ongoing on whether it causes more severe disease. Hospitals across the US are seeing younger people fill up beds, which is different than earlier iterations of the pandemic.

How to protect elder loved ones: The good news is that roughly 80 percent of Americans over the age of 65 have been vaccinated, according to the CDC. If you have an elder in your life who has been reluctant to get vaccinated, now is the time for them to seriously reconsider. For those who cannot or will not get vaccinated, extreme caution when interacting with others, especially in public, is critical. That includes masking and limiting contact with unvaccinated people.

But what about the breakthrough cases in fully vaccinated people? Vaccines have never been full-proof. The influenza vaccine in particular is a roll of the dice each year when it comes to effectiveness. The COVID-19 vaccines face the same challenges, especially when it comes to variants. While the studies showing that vaccinated people can carry a similar viral load to the vaccinated, it’s important to focus on the bottom line. The overwhelming amount of people who are being hospitalized due to the delta variant are unvaccinated. The vaccinated breakthrough cases typically result in asymptomatic or mild symptoms. Down the road, booster vaccine shots may be necessary to address variants.

What about nursing homes? According to the government, 81 percent of nursing home residents and 58 percent of staff have been vaccinated. A concerning study found that aides working in nursing home have lower vaccination rates. These are the staff members who interact with residents the most, so for the well-being of residents and staff, more facilities may consider vaccine requirements. If you have concerns about unvaccinated staff members at a facility where your loved one resides, talk to management. It’s also possible that facilities will reimpose visitation restrictions to reduce the risk of outbreaks of the delta variant.

Will this ever end? I wish I had a crystal ball. Everyone is exhausted. It is particularly disheartening for those of us who followed the guidelines and got vaccinated, and now find that a variant is threatening to upend the cautious reopening phase. Some experts approach the future of coronavirus like seasonal influenza, where as a society we take precautions as we can, but accept that there will be cases, hospitalizations and even deaths in vulnerable populations. Former FDA commissioner Scott Gottlieb estimates that we are further along with the delta variant than we may think, and that while brutal, the variant will sweep through the country fairly quickly. Other variants may follow, so stay vigilant when caring for anyone who is older or in a vulnerable population. If it is safe for you and your loved ones to do so, try to stay engaged in activities that you enjoy, whether it’s being out in nature or in low-risk social situations. It’s important not to overlook our mental and emotional health while we address COVID-19 variants.

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The Story You Are Living Is Bigger Than You Know — Life, Love, and Alzheimer’s

“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

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Understanding care as part of infrastructure

We finally had infrastructure week in which President Biden’s infrastructure plan was unveiled to the public. One area of the ambitious plan has some people raising their eyebrows: “Solidify the infrastructure of our care economy.”

Traditionally infrastructure has referred to maintaining roads and bridges, along with other transit-oriented projects like airports and ports. Infrastructure is also often used to refer to essential services like water supply systems and power grids. All of these things are addressed in Biden’s plan. On the surface, caregiving may seem unrelated to how we typically define infrastructure. But make no mistake that care is just as essential to our wellbeing as the roads we use to travel and the electricity we use to power our homes.

As this editorial by Ai-Jen Poo and Heather McCullouch points out, we need to invest in the “systems of support for human capital” so that we can help people get back to work and revive the economy post-pandemic. Just as our roads need repair, so does the way we support citizens who are caring for family members. Biden’s plan focuses on the expansion of home and community care services, which is long overdue. So many caregivers are struggling right now, and the COVID-19 pandemic has demonstrated the need for additional support. Expanding services like childcare, elder care and care for those with disabilities would not only create new jobs, but would help family caregivers get back to work themselves.

Like most people, I want my taxpayer dollars to be spent in an efficient manner on essential programs. In my opinion, caregiving is just as essential as clean drinking water, electricity and roads. Our population, much like our physical infrastructure, is aging and in need of support. Care advocates like Poo have long championed viewing caregiving as an essential sector of the economy that deserves investment. I couldn’t agree more.

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2021 Alzheimer’s disease facts and figures

While always a sobering overview, I believe it is important to review the annual analysis that the Alzheimer’s Association releases.

READ: 2021 Alzheimer’s disease facts and figures

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.

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Do you have a winter weather caregiving plan?

As a former resident of Texas, I have closely monitored the widespread power outages caused by winter storms this week. Having experienced the vicious ice storms that can strike North Texas, I am not surprised, but saddened. Texas and the entire southern region of the United States are ill prepared to handle a lengthy, severe winter blast. Governments in these states are reluctant to invest significant money to prepare for a weather event that typically only happens once every several years.

The power is slowly being restored and conditions should begin to improve in Texas. There will be calls to hold officials and utilities accountable, to better winterize the equipment so a catastrophe like this doesn’t happen again. But caregivers need a plan of their own to keep themselves and loved ones safe. If there can be any positives to come of of the crisis in Texas, it is that people will be prompted to think about their own situation and how they would survive if faced with such dire circumstances. Here are some things to consider.

  • Stay or evacuate: There are many factors to consider when deciding whether to evacuate before a significant weather event. While most people would rather remain in their homes, a loved one’s medical condition may determine what is the safest approach. Does your loved one need routine medical care, such as dialysis, that is provided at a facility? Hundreds of dialysis clinics lost power and water during the Texas storm and were unable to provide services. Does your loved one receive oxygen or on a machine that requires electricity? Rolling blackouts in Texas left some caregivers in fear of medical equipment failure. If you plan to ride out the storm, do you have the space to stock up on shelf-stable food, medications and medical supplies?
  • Power and clean water sources: In Texas, the two main issues are the lack of power, which means people can’t heat their homes, and a lack of clean water, due to frozen pipes and water treatment plant issues. As a caregiver, are you prepared to tackle these problems? Do you have a reliable backup power source like a generator? Do you have ample fuel to run such equipment? If you have a fireplace, do you have enough wood and do you know how to operate it? Do you have a supply of drinking water stored or a clean water source? People are getting creative in Texas, boiling snow to use as a water source but experts warn that this still carries health risks.
  • Evacuating after the storm: You’ve probably seen the videos of cars going sideways trying to navigate their neighborhood’s icy streets. Removing snow from walkways and digging out cars is strenuous, and can even trigger heart attacks. Will you be able to evacuate yourself and your loved ones safely if you need to leave after a winter storm strikes? Those living in rural areas may find roads to be impassable, due to heavy snow, ice or fallen trees. Road crews focus on the highways, meaning your neighborhood streets will likely not be treated. Plan your evacuation route ahead of time.
  • Reach out for help: Don’t wait until disaster strikes. If you have concerns about how you and the loved ones you care for will fare in a winter storm, address them now. Talk to other family members, neighbors, church members, etc. and make a safety plan. Talk to your loved one’s doctor if you need assistance in coordinated medical care during inclement weather. While one can hope to never have to implement such a plan, having these resources available during a crisis can make all of the difference.

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Finding a Live-In Arrangement That Works — Dealing with Dementia

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 words

Finding a Live-In Arrangement That Works — Dealing with Dementia

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Navigating the COVID-19 vaccine maze for you and your elder loved ones

The good news is that COVID-19 vaccines have been developed in record time and are being rolled out to the public. The bad news is that the distribution of the vaccines is off to a rocky start.

Front-line health care workers and nursing home residents are supposed to be top priority when it comes to the first phase of vaccine distribution, according to federal officials. The problem is that the coordination and management in distributing the vaccines has been left to local governments, meaning each city/county/state has their own rules on how the public can sign up to get the vaccine. New York City residents report facing a ton of red tape in trying to make an appointment. Some regions have online only appointment systems, which can be a roadblock for those who are not tech savvy. The strict temperature requirements for the vaccines mean that in certain cases, places open up vaccinations to anyone, in order to avoid having to discard spoiled doses. The chaos that has ensued and the lack of efficient communication at the local level has left some elders to contact their local media outlets for assistance in setting up a vaccine appointment.

In short, it’s a mess. I do have some hope that more stable leadership at the federal level will help iron out the vaccination rollout. Getting the pandemic under control will be the top priority, and there should be a greater willingness to partner with local governments to support the success of their vaccination programs. This truly needs to be a group effort. The more effective the vaccination program is, the quicker people can return to the lives they cherish, including spending time with family and supporting the businesses in their community.

So if you are an elder or an elder caregiver, where do you begin? Start with your family physician, who can confirm which vaccine phase group you are in, and offer a general timeline on when you may be eligible to receive the vaccine. Next, reach out to your local health department. Policy & Medicine offers this state-by-state list of local health department resources. Be patient, as websites and hotlines are overwhelmed right now. As the vaccine stockpile grows, there will be more places that will offer the vaccine, including pharmacy chain stores like CVS. Finally, don’t skip the second (booster) shot! It is necessary for the vaccines currently available to the public. I’ve seen several news reports of a steep decline in the rate of people returning to get their second vaccine dose. While a single dose will offer some protection, two doses are necessary for the most effective protection. Johnson & Johnson is working on a single dose vaccine, which hopefully will gain approval soon.

If you or your loved one has received the vaccine, please comment below about your experience.

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Care issues to receive holistic approach in new administration

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There are no adequate words to describe what America has experienced over the past week. But it is important to not lose sight that a new administration will be sworn in later this month, and while they will have their hands full with dealing with the aftermath of an attempted violent overthrow of our government and a raging pandemic, there is optimism that the Biden-Harris administration recognizes the need for a comprehensive plan to address caregiving issues. Joe Biden has been a caregiver, so he understands the issue at a personal level. Kamala Harris supported domestic workers’ issues while serving in the Senate. With a slim Democratic majority in both houses, there is a greater chance that some of these initiatives will become law. Let’s take a brief look at how the Biden-Harris administration wants to address caregiving issues. The complete Biden-Harris caregiving plan is available online.

  • Holistic approach: Care needs across the age spectrum will not be separated but addressed in a holistic fashion. Many families members are a member of the “sandwich generation,” caring for children and for aging relatives at the same time. There has long been a greater focus on childcare in this country in comparison to aging issues and I hope this imbalance will be corrected.
  • Building infrastructure of care: Biden’s plan is designed to address shortcomings in many areas of caregiving by reforming certain programs and launching new initiatives. For aging care, this would include providing more support for aging in place services, in part by reforming Medicaid and reducing the wait list and by establishing a fund to pay for home care and community care. Biden would seek to increase the caregiver workforce by offering better pay and basic benefits such as health care and paid leave. Tax credits and social security credits for caregivers would also be considered. Veterans and people of color would receive special attention to address past inequities.
  • Public health jobs corps: I’m particularly interested in the formation of a public health jobs corps. While it first would assist with the COVID-19 pandemic, eventually the corps would be used to support community health programs. A public health corps that served rural areas could be huge in allowing aging loved ones to safely stay in their homes.
  • How much will it cost? The ambitious plan has a hefty price tag of $775 billion over a decade. While elements of the plan, like caregiver tax credits, may receive bipartisan support, there will be plenty of pushback from fiscal conservatives on other components of the plan. While I support taxpayer dollars being utilized in an efficient, prudent manner, I also think that caring for its citizens should be a top priority of any country.

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Holiday gift ideas for dementia caregivers

We could all use some good cheer and a thoughtful gesture after such a challenging year. It you are looking to get a gift for a dementia caregiver, here are a few ideas.

Self-care: Family caregivers are notoriously bad about taking care of their own needs, but caregiver burnout puts everyone at risk. Caregivers are often short on alone time, so take that into consideration when choosing gifts. A candle with a soothing scent, calming tea, music to lift the spirits, a book of daily inspirational posts —choose something that will allow a caregiver to enjoy a momentary respite even while they are isolating at home with their loved one. Take a look at my CBD gift guide for other self-care gift ideas.

Homemade gifts: Whether it’s a favorite dish, a knitted item, a phone call or a handwritten card, showing you care in your own special way makes for a thoughtful gift. Family caregivers, especially of those with dementia, often feel isolated as friends drift away, uncertain how to navigate cognitive impairment. Simply reaching out with a small token of affection is worth more than you can imagine.

Helping hand: If you are a handy person, consider offering your services to repair something in or around the caregiver’s home (of course taking precautions due to the pandemic.) Or consider a subscription to a meal delivery service, or a gift certificate for grocery delivery or delivery from their favorite restaurant. Anything that will ease the burden of maintaining the household will be appreciated.

Genealogy: Some people with dementia remember the past better than the present. A gift for a genealogy service or scrapbooking materials for those who are not digitally inclined can be a gift for both the dementia caregiver and the loved ones they care for. Capturing those family memories is priceless. Gathering old photos and assembling them while remembering family stories can be a wonderful bonding activity. I find both the online services and scrapbooking to be enjoyable. This is also a good project to do while housebound due to the pandemic and/or inclement weather.

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