Tag Archives: caregivers

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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National Family Caregivers Month: Honor, take action

November is National Family Caregivers Month. This year’s theme announced by the Caregiver Action Network is “Caregiving in Crisis.” It’s an appropriate theme as the coronavirus pandemic has propelled family caregiving into the national spotlight. In 2020, many Americans found themselves as caregivers for the very first time.

This year’s election was dominated by the coronavirus pandemic. The new administration will have its hands full in trying to bring the pandemic under control, while initiating economic reforms to stabilize the economy. Once again, caregivers play a critical role in both areas.

Here are a few high priorities on my caregiver wish list:

  • Increased financial support for family caregivers: With unemployment rates still high due to the pandemic, it is critical that we offer ample funds and other benefits to those family caregivers who are at financial risk. You cannot care for others if you can’t care for yourself first.
  • More affordable health care options: The ACA was a start, but has significant gaps. The haphazard federal response so far to the pandemic has left some people with pricey medical bills. Hospitals are closing in rural areas when medical care is needed the most. If we’ve learned nothing else from 2020, it is that affordable and accessible health care is a critical need.
  • Increased pay, benefits for professional caregivers: Family members cannot do it all on their own. But the caregiver workforce in America is woefully underpaid. We must improve the pay, benefits and educational opportunities for caregivers so we can attract the best people to these jobs which the pandemic has illustrated are of immense importance.
  • Build a modern eldercare infrastructure: Our population will continue to grow older, live longer and the majority of people want to age in their own homes. We’ll need to develop accessible housing, strengthen our home care network and improve elder resources, especially in rural areas, so that people can grow old where they want, but safely and with ample support.

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Make a plan to vote now

This is not going to be a partisan political post. I truly believe senior care and caregiving is a bipartisan issue and will take the cooperation of members of all parties in order to pass much-needed legislation.

But the pandemic that has changed so much in 2020 is also changing the way we vote. How you vote and where you vote depends upon your local jurisdiction and personal preference; my only advice is to plan now if you haven’t voted already.

There are arguments to be made for and against the various forms of voting available this year. Here in Georgia, I took advantage of absentee voting and have already mailed in my completed ballot. Thanks to technology, I was able to monitor its progress and received electronic notification when it had been received and approved for processing.

For those who prefer to vote in person, check out your options for early voting. Many states are offering expanded voting locations and it may be a good way to avoid potentially long lines on election day. If you decide to go the traditional route and vote on Nov. 3, be prepared to wait in long lines. Hopefully it won’t be as bad as recent elections, due to the massive amount of people who are voting early this year.

And caregivers should keep COVID-19 in mind when making a voting plan, for yourself and your loved ones. Weigh the risks and comfort level when making your voting plan. Check with assisted living centers to see if they have a plan to help residents vote. For those needing a ride to vote, check out promotions from Uber and Lyft. Make sure to mask up if voting in person, and use hand sanitizer after touching the machine. The one caveat I would point out about waiting until election day to vote is with coronavirus cases on the rise in many areas of the U.S., do you want to run the risk of being sick and missing out on the chance to vote? Just something to consider.

After the election, the real work begins on working with those elected to create sensible, practical caregiving policies that offer families the support they deserve.

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Dementia Caregiving and COVID — When Dementia Knocks

 

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As we face another potential wave of coronavirus cases this fall and winter, this post by Elaine M. Eshbaugh, PhD, on When Dementia Knocks addresses the challenges of caregiving during this unprecedented time with compassion and humility. None of us have all of the answers and we cannot beat ourselves up for making mistakes.  

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I haven’t given COVID as much attention in my blog as it deserves. I’ve started many posts and abandoned them because they felt inadequate. To be fair, I have gotten a bit of hate the few times I’ve written posts about COVID. Examples: I thought you were smarter than this. COVID isn’t any worse than […]

Dementia Caregiving and COVID — When Dementia Knocks

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Navigating the ER as a dementia caregiver can be challenging

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Steve Shepard

I was moved this week when I watched the video of a Maryland woman who was distraught because she was told by hospital staff that she would have to leave her mother-in-law, who was in severe pain and has Alzheimer’s, alone in the emergency waiting room due to COVID-19 restrictions.

As a former dementia caregiver, I can empathize with the helplessness and the frustration that Laura Kramer felt. It’s ridiculous that Kramer had to take her mother-in-law to another county in order to receive treatment and be at her side as her family caregiver. You can watch her emotional plea.

My own father had multiple trips to the emergency room in the last year of his life while he was a resident at a memory center. Their procedure was also to leave the patient at the ER once admitted because they didn’t have the staff to wait with the resident. I often thought about how confused and scared my father must have been, alone in a chaotic emergency room atmosphere.

The good news is that Kramer’s experience forced the hospital to revisit its guidelines and admit that they had made a mistake. Of course COVID-19 restrictions are necessary in a healthcare setting, but no-exception policies could have deadly consequences when it comes to caring for those with cognitive issues. Kramer’s actions should be a role model for other caregivers who find themselves in similar situations.

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Two new movies take fresh spin on eldercare, Alzheimer’s

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I’m always on the lookout for films dealing with caregiving issues, Alzheimer’s and other dementias, as well as those that offer an honest look at growing older. I came across two interesting movies this week that I want to pass along to kick off your weekend. The first is Senior Love Triangle and the second one is Ice Cream in the Cupboard.

These films offer a unique perspective and won’t be to everyone’s liking. For those who prefer to keep their movies more in the PG range with no profanity, you may want to take a pass.  I found both films to be moving and thought-provoking, offering a raw yet empathetic look at the challenges that aging can present. More films are tackling topics such as aging, dementia, and family caregiving and I wholeheartedly support this trend.

Senior Love Triangle is based upon a photo book by Isadora Kosofsky. The story and moving images follow an 84-year-old man who is attempting to balance his relationships with 81-year-old Jeanie and 90-year-old Adina, with nursing homes serving as the backdrop. Dementia, other mental illness and how vulnerable seniors are preyed upon also are part of the storyline. Adult children often have a hard time with their elder loved ones finding romance in the care center environment, but this movie shows how important such affection and human connection is to older people.

Ice Cream in the Cupboard is about a middle-aged couple whose lives change forever after the wife is diagnosed with early-onset Alzheimer’s in her mid-fifties. The movie is based upon a true story. I appreciated how realistically the film depicted the challenges in dementia caregiving. It never shied away from the more brutal, violent aspects and never sugarcoated what Alzheimer’s caregivers may face on their journeys. However, there is also much love and devotion on display.

Both of these movies are available on video on demand. If you’ve seen these films, I’d love to hear your thoughts.

 

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Adapting to a new normal

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I recently was interviewed for a new caregiving project called Open Caregiving. The website serves as a collection for caregivers to share their experiences and offer advice to other caregivers. I was happy to participate.

If you would like to share your caregiving story, fill out this form.

One of the pieces of advice I offered that proved to be a key for me in thinking about my father’s dementia was to learn how to accept the “new normal.” While it is natural to lament what your life was like before, who your loved one with dementia was before the disease changed them, it is not helpful to be consumed with the past. Cherish those memories and try to focus on the present.

This was very hard for my mother and I to do as my father’s Alzheimer’s disease progressed further. My mother couldn’t help but correct all of the mistaken memories or gibberish that came out of my father’s mouth and I felt shame and embarrassment for my father’s state of mind. I knew how mortified he would be if he could see himself in that state of mental decline. I discuss this further in my book, The Reluctant Caregiver.

But what helped once my father was in the memory care center was simply to visit him and enjoy his company in that moment. If that meant getting him a cup of coffee or navigating him around the outdoor area for a stroll, then that was enough. I would no longer be able to discuss politics or sports with my father but I could still hold his hand and tell him I loved him.

I hope you are finding ways to adjust to the new normal as you wind your way through your own journey as a dementia caregiver.

 

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New study on family caregiving yields suprising finding

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As a journalist, I am inundated with dozens of reports on new medical studies weekly. The number has only increased during the coronavirus pandemic. One caught my eye this week, because I saw outlets running cheery headlines that set off my BS detector.

One headline example: “Long thought to be damagingly stressful, family caregiving does no harm”

That is quite a proclamation! It is certainly news to the thousands of us who have been family caregivers and experienced mental, emotional, and physical side effects. As with most such overly optimistic headlines, I go to the originating source. In this case, it’s a Johns Hopkins study, Transition to Family Caregiving, which found that “caregivers didn’t have significantly greater inflammation over a nine-year period.”

Certainly this is a significant finding, and it is good news that family caregiving may not have long-term physical effects. My concern is the way such studies are promoted across social media, which could cause family caregivers who are struggling to doubt their own experiences.

Let me be clear that caregivers should always listen to their own body, no matter what a study proclaims. Family caregivers may experience a range of emotional, mental and physical side effects attributed to caregiving. This can include anxiety, anger, depression, burnout, insomnia and appetite issues, just to name several common ailments. While these periods of stress may not trigger a response that show up in an inflammation study, it doesn’t mean that your symptoms are not real.

Bottom line, studies are useful but you know your own body better than any researcher. Don’t let rosy headlines discourage you from seeking help if you are feeling overwhelmed by the duties of family caregiving.

That being said, for those who are anxious about the long-lasting impact of family caregiving on their health, this study may help ease worries. I have found that being a family caregiver can strengthen one’s resiliency, which is a positive in these challenging times.

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