It has been 11 years since my father died. The weather is similar as it was on that day, a chilly rain, which in turn is typical Irish weather and reminds me of my father’s homeland.
The moment I received the call from my mother that my father was gone is forever embedded in my memory. The death of a parent is one of those world-stopping moments. It’s not something you get over, but the tide of life will continue to push you forward.
Witnessing the devastation of Alzheimer’s disease first-hand in my family prompted me to become an advocate for finding effective treatments and for better support of family caregivers. I join many others in those causes and I’m grateful for the connections I’ve made through the years.
Sharing your dementia caregiving stories is important and I hope you will continue to do so, whether it’s through a blog or other outlet. I know it’s not always easy to share such personal details, but putting a real face on a disease that has long been kept behind closed doors is essential in raising awareness and building public support for better treatments and services.
My father mattered and so do your loved ones. When those difficult anniversaries come, embrace the good memories and use the tough ones to inspire you to push for change.
Caregivers can experience additional stress around the holidays on top of an already challenging routine. That stress is often triggered by expectations: from others and ourselves on how a holiday should be celebrated. Family traditions are something to be treasured, but when caring for an ill loved one, those traditions can quickly become burdens.
One of the more difficult aspects of family caregiving is adjusting one’s expectations when it comes to holiday celebrations. My family struggled with these changes as my father’s dementia progressed and again when my mother was recovering from cancer. When a loved one has dementia, they may not recognize that it’s a holiday. They may feel overwhelmed and extra disoriented if their routine is disrupted and extra people are in the home. Big family celebrations and travel may no longer be a good option.
It’s okay not to feel the joy that the season may bring others if you are going through a difficult time. But in order to avoid a completely miserable experience, it can help to adjust expectations. Focus on what matters most to you and the small, simple things that can bring you joy during the holidays. If there is something that is particularly meaningful, seek out the support you need to make that happen, whether it’s attending a religious service or a holiday-themed event.
While nice, the gifts or a fancy dinner isn’t what makes the holiday season special. It’s spending time with loved ones. The traditions may change, but the love remains.
There have been a series of layoffs in the media world recently and I find myself once again without a job. The last time I joined the ranks of the unemployed was when I quit a new job to take care of my mother when she was diagnosed with colon cancer just six months after my father died. I am fortunate this time around to have received a severance package that will keep me afloat temporarily while I look for new opportunities.
So many people, especially family caregivers, don’t have such a safety net when they face a job loss. I wanted to share some lessons that I learned while I was an unemployed family caregiver and a few resources for family caregivers who find themselves in challenging financial circumstances.
Unemployment is one of life’s most stressful events, and it’s even more so for those who are the primary caregivers for a loved one. Before tackling the financial challenges, make sure you have the emotional support you need. High levels of sustained stress can trigger physical symptoms, so don’t ignore your own health needs during this difficult time.
Reassess your family budget and be prepared to make some difficult cuts. Are there any expenses that could be reduced or eliminated? With many family caregivers already living paycheck to paycheck, this might feel like an exercise in futility. But reviewing your budget is essential as it will help determine what financial assistance programs you may qualify for.
Take a thoughtful approach to your job search. Being unemployed can leave one feeling desperate and willing to take the first job offer that comes along, but that can end up backfiring. Unemployment provides an opportunity to reconsider your work priorities. List your job requirements, which might include a minimum salary level, remote work, flexible schedule, etc. Highlight which are must-haves and refine your job search to meet those requirements. For example, as my mother dealt with health complications that delayed her recovery, I turned to freelance work instead of looking for another full-time job. In that moment, family caregiving took precedent and I didn’t want to begin another full-time job only to have to quit again if my mother had further medical issues. The downside was that I had to utilize my parent’s limited financial resources to help pay my own bills during that period. When my mother became more medically stable, I began my full-time job search in earnest.
It won’t last forever: I spent over a year in what I called “severe underemployment” in which I picked up several low-paying freelance gigs to help pay the bills because I couldn’t find anything better at the time. Finally I found a job through a former colleague that turned out to be an ideal fit and allowed me to work with a fantastic team.
But be prepared for further hiccups: I learned this lesson the hard way: the universe isn’t going to give you a break because you are a caregiver. Home repairs, the car breaking down, or more substantial events like divorce and illness may occur. For example, as I’m still reeling from being laid off last month, I’m having to deal with a pricey veterinary bill because my dog is sick.
Happy Thanksgiving to those who celebrate. In addition to food, family and football, today is a day to show gratitude.
I’d like to give thanks to all of the caregivers, from family members to those in the care workforce. I’d like to express gratitude especially to those caregivers who feel invisible, unappreciated and overworked. You matter and you deserve more support. There are many people working hard to implement changes to better support caregivers. It’s been an uphill battle and will continue to be so, but caregiver advocates, many of us former or current caregivers, are a tough and dedicated bunch.
Let the caregivers in your life know how much their efforts mean. Thank you to all of those who have supported me on my caregiving journey, from following this blog to buying my books and sending encouraging notes and comments.
In honor of National Family Caregivers Month, I wanted to highlight a key area of support that is critical for family caregivers, yet many suffer in silence.
This AARP blog post is directed at employers and discusses how supporting their employees who are also family caregivers is not charity, but a smart business practice.
Not only is it a smart business practice, but it’s going to be essential over the coming years. As our population ages, more and more people will become family caregivers. 7 in 10 workers currently have some caregiving duties, according to AARP. One in four is a millennial and a growing number are even younger. Family caregiving is not an “older worker” issue but an issue that any employee can face.
One of the few bright spots in the pandemic was that in certain sectors of the workforce, strides were made in workplace and scheduling flexibility. Employees who are also family caregivers appreciated the difference that flexibility made in their quality of life. Now employers are using their fears of an economic downturn to try and force workers back into a rigid schedule and workplace locations. Some employees are rebelling, but many family caregivers have no choice because caregiving is expensive and not covered by insurance.
When family caregivers reach a breaking point, they end up leaving the workforce. That’s a loss for everyone. Employers who are concerned about having enough staffing can take steps to ensure that they are creating a support environment for family caregivers. It’s common sense that workers who have enough support to manage their family caregiving duties will also be more productive at work and more likely to remain with a company that offers such support. That makes it a win-win for all involved.
Here are some steps employers should consider to support family caregivers:
Offer a flexibile schedule
Offer remote work
Offer caregiver support programs as part of the employee health care package
Paid family leave
Making sure hiring policies don’t discriminate against older workers or those with caregiving duties
One can become a family caregiver in the blink of an eye. As the #CaregivingHappens campaign illustrates, people can face a family care crisis at any moment. One can be going through a routine day, at work or running errands, and receive the call or text that requires one to switch into caregiver mode.
By raising awareness of how many people are family caregivers and how you may encounter them throughout your day, it helps to highlight the resources they need and where there are gaps in support systems. Family caregivers must not remain invisible or taken for granted.
Do you find yourself facing a family caregiving situation for the first time? Check out these 8 Rules for New Caregivers compiled by AARP.
While a cure or effective treatment for Alzheimer’s continues to remain elusive, there have been promising research developments this year. Recently, the results of a drug trial found that lecanemab helped to slow the progression of Alzheimer’s.
These breakthroughs wouldn’t happen without trial participants. It’s vital that researchers have access to a sufficient pool of volunteers. There are a variety of ways people can participate in Alzheimer’s research and you don’t have to have a specific diagnosis or be a certain age to participate in some programs. I take a battery of online brain tests and answer a health questionnaire a few times per year. Other areas of research may require in-person interviews, a blood draw, following a specific diet or taking medication.
Participating in a drug trial can come with risks, such as side effects from the medication. For example, aducanumab led to brain bleeding or swelling in 41 percent of clinical trial participants.
Study participants are closely monitored, so side effects are documented and treated quickly. Those willing to take this risk help determine a drug’s safety profile and whether a drug’s benefit outweighs its side effects.
Another important point to remember when it comes to drug trials is that there is typically a group receiving the trial drug and another group receiving a placebo, but “blind” trials don’t inform participants which one they are receiving.
If you are interested in learning more about participating in Alzheimer’s research, visit TrialMatch from the Alzheimer’s Association and the Brain Health Registry.
I recently bought a pair of shoes that left me frustrated. The soles were coated in a material that made them extremely slippery, especially on hardwood floors. I purchased them online, and I read the first page of reviews, which were mainly good. But starting on around page three, the warnings about slips and falls because of the slippery soles began. I wish I had researched a bit longer!
Both of my parents suffered from falls as they aged. My father’s dementia made him wander at night, a recipe for disaster. My mother broke her shoulder after falling off the toilet in the middle of the night. Her arm strength and range of motion decreased after that injury. But falls aren’t just a risk for older people. I myself fell at the park last year, slipping down a small slope covered in leaves. I had a sore back for days.
This odd pair of shoes made me think about how important mundane details are when it comes to caregiving, like what kind of shoes are your loved ones wearing? For loved ones who shop online, it’s worth assessing to make sure they are safe for walking on a variety of surfaces. From now on, I will pay closer attention to the soles of shoes!
Graphic courtesy of Administration for Community Living
In late September, the U.S. Department of Health and Human Services released its 2022 National Strategy to Support Family Caregivers. It’s the first time such a national strategy has been proposed. While it’s long overdue, addressing the needs of family caregivers in a coordinated national effort is a positive development.
“Supporting family caregivers is commonsense, since most people will at some point in their lives be a family caregiver, need a family caregiver, or both. Caregivers are sacrificing for their loved ones and often are standing in the health care gap by providing that care,” said Centers for Medicare & Medicaid Services (CMS) Administrator Chiquita Brooks-LaSure.
Your feedback is critical to the success of the strategy. The commenting period opened Oct. 1 and will be accepting comments for a 60-day period. The strategy will be updated every two years as required by law.
I recently had the privilege of sharing my caregiving experience as member of Generation X on the Rodger That podcast.
Every generation faces its own unique challenges when it comes to the family caregiving experience. It’s difficult no matter what age you are! My parents were older when they had me so I faced caregiving duties a bit younger than most in my generation. Women especially are vulnerable to being forced to leave the workforce to provide family care, which has a ripple effect not only on one’s current financial situation, but also for retirement savings. This is what I now have to contend with as I’m way behind in saving for retirement, while also facing a risk that the government will not continue to fund Social Security at its current levels by the time I reach eligibility. Gen Xers on the older end of the spectrum are also reaching an age where we will face more age discrimination in the workplace. So the ability to make up lost financial ground becomes even more of a challenge.
Millennials and Gen Z members also can find themselves facing an unexpected family care crisis that requires them to derail their life plans just as they are becoming independent young professionals. Long-term caregiving situations can cause one to postpone having children or making career changes. The pandemic has thrown a wrench into just about everyone’s life, with even more people taking on caregiving responsibilities with little to no experience.
There are also positive takeaways, as some members of younger generations are embracing aging issues. From intergenerational roommate services to apps and services being developed by younger people to help improve the quality of life of our elders, there is hope that our youth will continue to embrace these noble goals as they age. It indeed takes a village.
RT @AlzAuthors: AlzAuthor Myrna Marofsky redefines “caregiving” into “care-living,” a term that changes the conversation for a husband and… 3 weeks ago
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