Older Caregivers Need Support

While many older adults might look forward to slowing down after retirement, taking on fewer responsibilities, and doing what’s necessary to care for themselves, many also find themselves in unexpected caregiving situations. Two sisters in their late 70s have lived together for years, but one has begun showing signs of dementia. A 61-year-old daughter finds herself having to care for her 86-year-old mother, who has several long-term chronic illnesses. An 87-year-old mother still caring for her disabled son wonders how long she can continue. A husband and wife in their early 80s have been married and caring for each other for 45 years, but the husband took a bad fall and the wife is feeling overwhelmed. A couple in their late 70s find themselves caring for two grandchildren because their parents are dealing with substance abuse and mental health issues. 

Since 2015, the number of people caring for an older adult has increased by over 8 million, and more than half of those people are 50 or older, with nearly a quarter being 65 or older. As the recent U.S. Census Bureau report has noted, of the children under 18 not living with a parent, over 50 percent live with a grandparent. 

We know that caregiving can be stressful, but for older caregivers, it can be frightening and overwhelming. Oftentimes, by the time older caregivers reach out for help, they are already depleted and in a trauma state, anxious about what to do next. This can lead to frustration, depression, intense grief, and a feeling of helplessness. Indeed, Aging Service Providers at JABA receive requests for help like these every week:

“I have been the sole caregiver to my husband since we got married over 45 years ago, but I don’t even know where to start,” writes an 80-year-old woman from Charlottesville. “He has had six falls in the last 8 months. He needs 24-hour assistance and I cannot help him much since I recently hurt my back.”

“I’m 61 and work full-time,” a man writes. “My 86-year-old mother lives with me. She is still healthy and mobile, and needs to get out of the house to socialize more, but I don’t have the time. I worry what will happen if her health and mobility declines.”

“I am almost 82, with depression and anxiety issues. My marriage is strained, with doubts and trust issues on my part. Most local resources seem geared toward younger people and families just beginning their journeys. Is there anyone who specializes in those of us who are older?” a woman asked recently. 

“I care for my 77-year-old sister, who is disabled, and she has lived with me in the County since 2012,” a woman writes. “Her health has deteriorated somewhat during that time frame, and now finds it difficult to do the things she needs to do, and I know she will need more help in the future. I travel often to be with other family members and have left her alone, but I worry I won’t be able to do that anymore.” 

According to experts, older caregivers tend to be more devoted caregivers, feeling a strong sense of love and duty for their loved ones, but that devotion can lead them to ignore or dismiss their own needs. They may feel they don’t have permission to care for themselves. This can be dangerous for older caregivers, many of whom are at risk of developing chronic conditions themselves if they haven’t already. The best thing to do is be proactive about dealing with the situation you are in or the situation you are anticipating and reach out for support. You are not alone.

You can start by contacting JABA at 434.817.5244 or visiting their website at @jabacares.org/caregiver-support. 

David McNair handles communications, media relations, and social media efforts for JABA.

This article originally appeared in C-Ville Weekly.

The Challenges and Rewards of Caregiving

Being a caregiver for an elderly or disabled loved one can be one of the most challenging, frustrating, and rewarding experiences of your life. And you won’t be alone. Today, there are about 53 million family caregivers in the U.S., and about a third of caregivers spend 20 hours or more caregiving. Depending on the degree of caregiving needed, such as caring for someone with dementia or severe health and mobility issues, that time can be much greater. 

“By mid-century, there will be only three family caregivers available for each person requiring care," said Dr. Susan Reinhard, senior vice president and director of AARP Public Policy Institute, after the release of a study several years ago. " That means, to avoid putting them at higher risk as they age, we need to provide support for existing caregivers who are underserved by the current long-term services and support system.”

Indeed, while many of us have found, and will find, ourselves in caregiving situations, we as a society need to find better ways to help each other in these situations. And we do that by first acknowledging what it means to be a family caregiver.

While helping out an elderly parent with chores and errands is something many people can manage easily, and maybe have done for years, what happens when the level of care needed suddenly escalates? Perhaps a serious medical problem emerges? Or the parent has a fall? Or signs of dementia begin to show themselves? Suddenly, many caregivers find themselves in an overwhelming situation and are forced to rearrange their entire lives around caregiving.

A recent article by Catherine Pearson in the New York Times was brutally honest about the situation, addressing the frustration and anger that can come with finding yourself in a caregiving role. And the difficulty of dealing with and expressing those feelings. 

“The stress is just monumental and constant,” said Ann Brenoff, 73, whose husband was diagnosed with acute kidney failure and needed round-the-clock care. She described feeling less like a wife and more like a medical case manager, losing touch with friends, and gaining 20 pounds.  “I was pissed off,” she said. A director of a caregiving clinic Pearson spoke to said that among the 4,000 or more caregivers she has worked with, she has "yet to meet one who has not expressed some form of anger."

Of course, as the director points out, beneath the anger is a "deep well of sadness" and a feeling of powerlessness. 

“Many caregivers can’t plan for the next day or week, let alone the next month or year,” said the clinic director. “And that’s maddening.” 

While the typical caregiver has for years been a 49-year-old woman and, most likely, the daughter of those being cared for, that has been changing. More men are becoming caregivers, typically the sons of those being cared for, and a quarter of those 53 million mentioned earlier are millennials who are an equal number male and female. For example, Pearson spoke to a woman who began caring for her mother full-time in her late 30s after her mother suffered complications from spine surgery. And a 39-year-old man found himself caring for both his parents after they suffered strokes within months of each other. And then there are the older caregivers, 75 years or older, who are usually the only supports their loved ones have. 

People are often unprepared for caregiving situations, both because someone's health takes a sudden or because roles get altered or reversed. For example, caregiving often requires a reversal of the parent/child relationship, and that can bring up all kinds of emotional and psychological issues among family members. And pit siblings against each other. Experts agree that self-compassion and peer support is crucial

And as the situation evolves, increasing stress levels and the feeling of being “trapped” can sneak up on you. That’s why researchers have found that affordable respite and in-home care were the most desired support among caregivers, along with other supports and resources to manage stress. Indeed, it’s not uncommon for caregivers to find themselves isolated, overwhelmed and even frightened by a caregiving journey they weren’t quite prepared for. This is why finding a way to express your complicated feelings is so important.

“A lot of caregivers are afraid to express their anger because they feel guilty,” a millennial caregiver who created a Facebook support group told Pearson. “...I think people worry if they express it to somebody who doesn’t totally get it, that it will overshadow the totality of their experience.”  

So, where does the reward come in with all this? Well, it doesn't come for everyone, but when it does it comes in the form of the help and love you have to accept from your friends and family, and your community — and the help and love that those being cared for have to accept from the children, friends, caregivers, and doctors they work with.

We deepen relationships with people, even our deepest ones, by struggling with challenges together, by revealing our vulnerabilities, by being straightforward and honest about our needs, and by riding together the often turbulent waves of feeling and emotion that make us truly human. All those come to the forefront in a caregiving situation. There’s no hiding from each other. We realize deeply that taking care of each other means taking care of ourselves, too.

If you're lucky, you'll end up feeling deeply grateful for the time you got to spend together in that caregiving situation — not because it was always fun or joyful, but because you got to experience the full depth and breadth of our humanity and the connection you had with your loved one. 

David McNair handles communications, media relations, and social media efforts for JABA

This article originally appeared in C-Ville Weekly.

Who'll be taking care of you?

On a recent episode of Slate's How To podcast, Amy Goyer, AARP’s family and caregiving expert, was brought on to provide advice and guidance for caregivers. But it was her own cautionary tale in caregiving that was most impactful. She'd worked in the aging field for 40 years, she said, and had cared for her grandparents, her parents (her Father had Alzheimer’s and her Mother had a stroke), and her sister, who was across the country from her and living with Cushing disease.

"It is a cautionary tale because I did everything right and it was still not enough...because my dad had Alzheimer’s and needed 24/7 care. Even with me providing 60 to 80 hours of care a week myself, I had to pay people while I was working, and I ended up going bankrupt," she said. "It was humiliating."

"I had a financial advisor for my parents," she added, "but I did not have a financial advisor for myself."

Indeed, it was a theme in the episode: caregivers becoming physically, emotionally, and financially drained by the challenges of caregiving, and a healthcare system seemingly designed to make it even tougher.

At one point, the moderator turned things around on Goyer and asked her how she planned to prepare for being cared for in the future, and it became clear that even she had not figured that out yet. 

"My boyfriend of 16 years, my life partner, has many nieces and nephews, but neither one of us have kids," said Goyer. "And so there is that feeling of, oh, God, who’s going to do this for us?" 

However, even for those caregivers in the episode with kids, there was a feeling of not wanting to put them through what they were going through with their own parents. 

This led to an interesting discussion about needing to be proactive about your long-term health and emotional stability as you get older - and to participate in your own anticipated need to be cared for. Easier said than done, of course.

Goyer emphasized avoiding isolation as you get older, expanding your social circles, tending to your long-term friendships, hanging out with neighbors, and perhaps resolving problem relationships with people you love. It's also about where you live, who you live with, and how your home is set up. It's about educating yourself about what community and home-based services and supports are available. In fact, she recommends reaching out to your local area agency on aging, in our case JABA on Hillsdale Drive. And getting your paperwork in order. 

"I would try to talk with an attorney who’s part of the National Academy of Elder Law attorneys or estate planning attorneys," said Goyer. "Get all that paperwork in place, but then figure out who’s going to make sure that my wishes are adhered to, who’s going to be that person, who’s going to advocate for me if I go in the hospital, or who’s going to water my plants if I suddenly go in the hospital or take care of my dog."

And as Goyer mentions, there are now Aging Life Care Specialists you can hire who'll help you and your family navigate the various situations that can arise with aging and caregiving. And while engaging professionals can be costly now, they can end up saving you much more later. 

"It's important to prepare to be cared for ourselves, because it’s not a matter of if we’re going to need it, it’s a matter of when," said Goyer. 

David McNair handles communications, media relations, and social media efforts for JABA.  This article orginially apppeared in the GenNow! section of C-Ville Weely.

JABA - Help Us Respond - Virtual Fundraiser

From September 12 to September 16, you'll notice something different on JABA's website, across our social media, and in our email newsletter. We'll be launching our first ever virtual fundraising campaign and we'll be sharing all the reasons why people reach out to JABA for help. we encourage you to share and comment on social media during the week. With all of us spreading the word, the campaign can have a bigger impact. One of the first things you can do is visit our events page on Facebook and invite folks. Thanks!

Event page: https://www.facebook.com/events/609663900879520?ref=newsfeed

JABA Joins CV19 Educate America Campaign

JABA has joined the national CV19 Educate America Campaign to help inform the elders, caregivers, and families we serve about CV19 CheckUp, an online system developed to help Americans be safer, healthier, and ensure their individual needs are met during the pandemic.

CV19 CheckUp is a hyper-personalized online system that evaluates an individual’s risk levels associated with COVID-19 and provides recommendations and resources to reduce those risks. The tool was developed to help Americans be safer, healthier, and ensure their individual needs are met during the pandemic.

“CV19 CheckUp fills a critical need for our community,” said JABA CEO Marta Keane. “It offers our community a comprehensive resource that educates, informs, and advises them, one-by-one, about how to help protect themselves from COVID-19.”

CV19 CheckUp employs artificial intelligence to analyze data each person provides by completing an online questionnaire. It is designed for those who are considered high risk, including older adults, low-income individuals, ethnic and racial minorities, and LGBTQ communities. The tool’s algorithms are driven by science and use data from the U.S. Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO). CV19 CheckUp is free to users. It is confidential and does not require a name, email address, or identifier of any type.

Upon completion of the questionnaire, CV19 CheckUp immediately delivers a personalized report. The report answers questions such as:

●  How likely am I to get COVID-19 or spread it to others?

●  If I get COVID-19, how severe would it likely be?

●  What steps can I take to reduce my risks of getting COVID-19?

●  Where can I find help to ensure my needs are met during the pandemic?

Through CV19 CheckUp, governments and health organizations will also receive valuable intelligence about their audiences and key stakeholders. These data will facilitate developing methods that help target populations at high risk for COVID-19. Data are confidential, and findings can be used to gain insights on:

●     What people know and believe about the pandemic

●  Compliance levels with recommended safety protocols

●  Behaviors by location, race, ethnicity, economic status, etc.

●  Unmet needs for health care, social services, financial support

Jim Firman, chief innovation officer for BellAge, explained that CV19 CheckUp was developed to fill an urgent public need. “It is very difficult for people to find information relevant to their personal situation. The average person has to spend a lot of time and effort on numerous websites, digging through pages of information looking for answers,” said Firman. “CV19 CheckUp does the work for them. We developed a hyper-personalized tool that makes it easy for anyone to understand their level of risk and take steps to reduce those risks. Our goal is to educate 92 million high-risk Americans, one by one.”

The individualized approach that defines CV19 CheckUp will deliver much-needed support to the more than 92 million Americans, age 50 and older, who are hardest hit by COVID-19. The CDC described people in this age group as being at higher risk of severe or fatal consequences if they are infected with COVID-19. 

The CV19 CheckUp is available nationwide at www.CV19CheckUp.org.

Just Rewards Caregiver Respite Event - September 14