I couldn’t help but think about my father this week as Joe Biden was inaugurated. Biden is an Irish-American Catholic who proudly recognizes his Irish ancestry, frequently quoting Irish poets and writers in speeches. I think my father would approve.
My father’s interest in politics began early. He was born into a devout Irish Catholic family in Belfast. Nazi air raids sent him and his family fleeing into bomb shelters in the middle of the night. His initial love of America was due in part to the U.S. military’s role during WWII. He closely followed the violent, deadly developments that took place between nationalists and unionists in his beloved Belfast and surrounding areas during the Troubles. By this time, he had already immigrated to America, which was a good thing, because he alluded on more than one occasion that he may have become directly involved in the unrest if he had remained in Northern Ireland.
As a child, what I remember most about my father’s political beliefs was his adoration of all things Kennedy. He loved to tell the story of how he met a young JFK in New York City. My father was a bellhop at the hotel Kennedy was staying at and he got to shake his hand. He also followed Robert F. Kennedy’s political rise closely and I believed he attended at least one rally in Los Angeles. My father lamented the Kennedy curse that cut short the political aspirations of the two brothers.
My father’s heritage directly influenced his political perspective. He had great disdain for Britain’s control and interference in Northern Ireland, and closely followed other countries who battled for independence from crown rule. His many letters to newspapers reflected a deep political interest in conflicts around the globe. In spite of political turmoil, my father remained devoted to all things Irish, beaming with pride when those of Irish descent were recognized for their talents. As my mother wrote in my father’s obituary, he loved his adopted country and homeland equally. He recognized that the good parts outweighed the challenges. It’s a poignant reminder for me right now, as America struggles through its own cultural and political strife.
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.
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.
While many people, including myself, will be saying “good riddance” to 2020, we know that turning the page on a calendar will not make things magically better. Caregivers will still be overwhelmed by the COVID-19 pandemic, though vaccines are beginning to roll out. Sadly, it will not be soon enough for some, and more people will grieve the loss of a loved one due to coronavirus in 2021. Other terrible diseases, such as Alzheimer’s and cancer, will continue to take a toll. Our dedicated health care workers and other essential workers will continue to be overworked, underpaid and sacrificing their physical and mental wellbeing for the rest of us.
But there are glimmers of hope that 2021 won’t be as devastating as 2020. We’ve learned so much in this terrible year, and in 2021, we will get to apply those lessons in our lives. It is my hope that you and your loved ones can find some sense of peace in the new year as we work to make each day a bit brighter. It won’t be easy, but caregivers are tough and compassionate, and that is an amazing combination of qualities to have during difficult times.
It’s the ninth anniversary of my father’s death, and that also means it is time for my annual PSA (public service announcement) about being gentle and non-judgmental with those who choose not to celebrate the holiday season because they’ve lost someone during this time of year.
The coronavirus pandemic that has claimed more than 300,000 lives in America will put a damper on this year’s festivities. But I also noticed the opposite effect, with neighbors putting their Christmas decorations up well before Thanksgiving. Both are natural reactions and we should respect the way individuals choose to cope.
This year as I reflect upon the anniversary of my father’s death, I remembered a detail I came across in a card he had attempted to write one of his sisters, but no longer had the cognitive function to address and mail. He had written in the card that he had been diagnosed with the swine flu. He had not received such a diagnosis, but the H1N1 pandemic was in the news at the time. Dad had latched on to that to explain what was happening to his body. That memory came back strong this year as the coronavirus pandemic unleashed its fury across the world.
Related to the pandemic and the need to wear masks, I also am reflecting on the fact that Dad would likely have been anti-mask. In 1986, when I was 12, wearing seat belts became mandatory when driving a vehicle in California. I remember many heated arguments in the car because of my father’s stubborn refusal to put on his seat belt. He claimed wearing the belt was constricting and made him feel like he was choking. Sound familiar this year? As an ill-advised compromise, Dad would drape the belt over his torso, but not latch it. Fortunately we never had any serious accidents. According to the Los Angeles Times, my father was part of the majority who at the time did not wear seat belts on a regular basis.
It has been the strangest and most challenging of years and the holiday season is no different. Connect with those you love however you can safely. Offer words of comfort and healing to the many who are grieving.
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.
My father began to struggle with money issues years before other signs of dementia became apparent. He would argue with clerks because he thought they overcharged him and had trouble paying for items in cash, especially if change was involved. He began to carry a large wad of bills around and would dump large piles of coins on the bed in an attempt to “sort” them but there was no organization taking place. Your loved ones may have more subtle signs of financial issues due to cognitive decline, but it is important to monitor.
Read more below from Kay Bransford of Dealing with Dementia.
Eureka! What I recognized anecdotally for years is now published research that concluded financial symptoms of cognitive issues are surfacing up to six years before a formal clinical diagnosis. SIX YEARS. You are noticing changes in your own thinking, or you are seeing changes in a loved one that is concerning, but the primary care…
It will be a different kind of Thanksgiving celebration this year for many families. Smaller gatherings, not getting to hug elder loved ones, some spending the holiday in isolation.
I hope by this time next year, we will largely have put the coronavirus epidemic behind us. Having spent almost the entire year in its grips, we must be resilient for the next few months as vaccines become available. I know many are understandably exhausted, but there does appear to be a light at the end of this tunnel.
There are many things to be grateful for this year.
I am grateful to the healthcare workers, from the ICU nurses to nursing home staff to home health aides, who put their lives on the line each and every day to take care of the rest of us. That is an awe-inspiring sacrifice. (To the thousands who lost their lives to COVID-19 while caring for others, I express my gratitude to their grieving families.)
I am grateful to all of the frontline workers, from grocery store clerks to transit employees to those in food production and utilities. They kept the rest of us who were isolating at home up and running, so we could continue doing our jobs and taking care of our families.
Of course I want to give thanks to the family caregivers. The stress and anguish they have gone through this year is devastating. I’ve read so many heartbreaking accounts of families not being able to visit loved ones in nursing homes because of lockdowns. Watching their loved ones physically and mentally decline via Zoom or standing outside, separated by a glass door or window is something no one should ever experience. Many families couldn’t even be with their loved ones as they died. For those caring for vulnerable family members at home, every sniffle put one on high alert. Trying to keep loved ones at home healthy, comfortable and entertained while reducing their risk of infection is a monumental task. Many caregiver resources have been limited or shut down due to the pandemic, leaving families to fend for themselves.
This Thanksgiving, I hope you are able to find some joy and comfort, even if your celebration has to be altered due to the pandemic. As a token of gratitude, I am participating in a book giveaway. Both The Reluctant Caregiver and CBD for Caregivers are available for free.
I’m always interested in new technologies that can help elders and their caregivers. So when I received an email about Amazon Alexa’s new Care Hub, I took some time to look at its features.
Smart home devices such as virtual assistants have become popular over the last several years, and their ease of use means a wide range of people, from children to older people, can adopt them without much of a learning curve. The privacy concerns are real and should not be ignored, however many find that these devices are helpful in their daily lives. I have one of the older Amazon Echo devices and I use it to automate the house lights and to use as a timer when I’m cooking.
The new Care Hub requires the elder user to have an Amazon Echo device in their home and for the caregiver to at least have the Amazon Alexa app on their phone. Echo devices start around $50, though you can get older generations at a discounted rate, especially during Black Friday or other deal days. For example, a deal right now offers an Echo Dot for $29.99.
A customized activity feed is linked with alerts so that you can monitor when your loved one first interacts with the device each day. If activity is delayed, then you can check up on them, either through the Care Hub or by phone. Alexa will also notify caregivers if their loved one asks for help, allowing the caregiver to check on the person and call emergency services if necessary.
There are a lot of things that Alexa can do to help elders, from offering pill reminders to adding items to the shopping list and making hands-free calls without having to remember numbers.
I haven’t had the chance to use Amazon’s Care Hub because I’m not currently caregiving for anyone, but would love to hear feedback from anyone who has had the chance to try it.
I admire Kate Swaffer for sharing her experience with early-onset dementia with the world. If you haven’t been following her, I highly recommend doing so. She offers great insight and tips for how those with dementia can be better accommodated so they can continue living their lives to their fullest potential.