Caregiving 101: A First Glance at Aging in America
It’s old news that we are growing older as a nation, but only four in ten Americans, aged 40 to 70, know that 60 to 70 percent of 65-year-olds today will require long-term care services at some point in their lives.
There are more than 45 million caregivers for older adults. These are people who need information and support to make their lives easier.
Who Needs Our Care?
We need to be aware of our changing demographics. Statistics today will quickly become personal realities -- affecting our families, friends and neighbors.
The number of people aged 85 or older—those most likely to need long-term care services is expected to increase by 74 percent between 2007 and 2030. (AARP Public Policy Institute. Across the States 2009. Profiles of Long Term Care and Independent Living.)
In the next 20 years, one in five people will be 65 or older and this population is projected to grow by more than four times as fast as the population as a whole. (U.S. Census Bureau, Current Population Survey, Annual Social and Economic Supplement, 2008). And older adults are living longer, too.
The growing number of older adults will be trying to manage conditions like dementia, falls, diabetes, stroke and sensory losses. Thirteen percent of persons over the age of 65 have Alzheimer’s disease. (2009 Alzheimer’s Disease Facts and Figures, Washington, DC. Alzheimer’s Association.)
Older adults face an increasing need for transportation services. The average number of years a person continued to drive -- the driving expectancy -- was significantly less than overall life expectancy.
Men and women who were still driving at ages 70 to 74 were expected to drive, on average, another 11 years. But these men were expected to live about 17 more years, and the women nearly 21 more years.
This gap between driving expectancy and overall life expectancy means men in this age group who stopped driving were dependent on alternative transportation for an average of six years. For women, the gap translated into about 10 years dependence on other transportation modes. (Foley, DJ, Heimovitz HK, Guralnik JM, Brock DB, "Driving Life Expectancy of Persons Aged 70 Years and Older in the United States," 'American Journal of Public Health,' vol. 92, no. 8 pp. 1284-1289.)
Who are Our Caregivers?
Caregivers are not just professionals. You are a caregiver if you provide social or physical support to an aging relative or friend or to a person with a disability.
Family caregivers provide the overwhelming majority of long-term services in the U.S.,approximately 80 percent. (Thompson, L., Long-term care: Support for family caregivers [Issue Brief]. Washington, DC: Georgetown University, 2004 and Long-Term Care Financing Project, Long-term Care Users Range in Age and Most Do Not Live in Nursing Homes. U.S. Agency for Healthcare Research and Quality, November 8, 2000.)
The most common type of informal caregiving relationship is an adult child caring for an older parent.
1.4 million children ages eight to 18 provide care for an adult relative; 72 percent are caring for a parent or grandparent. (National Alliance for Caregiving and the United Hospital Fund, Young Caregivers in the U.S., 2005.)
The increasing number of older adults will put even more caregiving pressure on fewer middle generation adults.
As the baby boomers turn age 85 between 2030 and 2050, the age 85+ population will skyrocket by another 118 percent. (U.S. Census Bureau, Current Population Survey, Annual Social and Economic Supplement, 2008)
The current nursing home facilities are ill-equipped to handle the growing number of older adults and this population will be more dependent on family for care.
Current nursing home facilities are operating at an 88 percent capacity. (American Health Care Association, 2009).
We would rather ignore the statistics if we are not personally affected by them. But the truth is, it’s happening sooner than we think,
First baby-boomers will turn 65 in 2011. (Administration on Aging).
It’s more common than we think,
In the past 12 months, an estimated 65.7 million people in the U.S. have served as unpaid family caregivers to an adult or a child.
We don’t have the information we need to provide the best care for our loved ones;
78% of caregivers feel they need more help or information about at least one of 14 specific topics related to caregiving.
And caregiving duties will most likely fall on you or someone close to you.
Family caregivers provide about 80 percent of all long-term care services in the U.S. (Metlife Mature Market Institute, 2001).
Without the right supports and information, the current situation will affect:
Family caregivers experiencing extreme stress have been shown to age prematurely. This level of stress can take as much as 10 years off of a family caregiver's life. (Elissa S. Epel, et al. From the Proceedings of the National Academy of Sciences, Dec 7, 2004, Vol 101, No. 49).
Most caregivers work either full or part time while providing care (59 percent). (National Alliance for Caregiving with AARP and MetLife, 2004 in addition to their caregiving responsibilities).
Family caregivers comprise 13 percent of the workforce. In one study, 37% of human resource directors did not feel that their organizations made a real and ongoing effort to inform employees of available assistance for managing work and family responsibilities. (Wagner, D. and Neal, M. (2002). Working Caregivers: Issues, Challenges and Opportunities for the Aging Network. National Family Caregivers Support Program, Program Development Issues Briefs, Administration on Aging, DHHS. Galinsky, E. and J.T. Bond. (1998). The 1998 Business Work-Life Study. New York: Families and Work Institute).
More than half of working caregivers (57 percent) say they have to go into work late, leave early or take time off during the day to provide care. (National Alliance for Caregiving with AARP and MetLife, 2004).
For some adults with heavy caregiving responsibilities, the impact on their ability to work is significant. Some working caregivers reported having to (17 percent), shift from full-time to part-time work (10 percent), quit work entirely (6 percent), lose job benefits (5 percent), turn down a promotion (4 percent), or choose early retirement (3 percent). (National Alliance for Caregiving with AARP and MetLife, 2004).
Over the course of a caregiving “career,” family caregivers who provide intense personal care can lose as much as $659,000 in wages, pensions, and Social Security. (Dimensions of Family Caregiving: A Look Into the Future; Metlife Mature Market Institute, 2000).
And Our Economy.
American businesses lose between $11 billion and $29 billion a year in reduced productivity costs related to caregiving responsibilities. This includes workplace disruptions, scheduled and unscheduled absences, leaves of absence, reduction from full- to part-time work, early retirements, and leaving work entirely to care for a loved one. (Metropolitan Life Insurance Company, 1997).
Assess your loved one’s medical, financial and transportation needs.
Explore and discuss preferences in terms of care and living arrangements with the person you care for.
Know there are resources, services and people to help.
Judy Heumann was known as the Mother of the Disability Rights Movement. It wasn’t just because of he…
Judy Heumann was known as the Mother of the Disability Rights Movement. It wasn’t just because of her undeniable impact, having led the charge through grassroots demonstrations and organizing to pass significant legislation like the Americans with Disabilities Act. She owned that title because she nurtured the movement and the people within it. Her defiance against systemic ableism was a path of overwhelming obstacles. Many people who were on that path with her looked to Heumann to help navigate the unknown, and to bring clarity to a struggle that many were going through in silence. She lifted the movement through storytelling and being candid about her own experiences.
Today, we celebrate Judy Heumann.
“We are the People Who Must Drive Change.”
The Impact of Storytelling
Because of Judy Heumann, the lives of millions of disabled people were changed for the better. Her legacy is written within the generations of disability advocates that will look to her example and ensure that her life’s work continues on.
Welcome to a new year! I hope everyone is having a nice start to 2023. New Year’s Day is alway…
Welcome to a new year! I hope everyone is having a nice start to 2023. New Year’s Day is always my happiest day, because it feels like a clean slate and fills me with so much hope for the next 365 days.
This year is no exception. 2023 appears to be a year of new beginnings: after almost 3 years of long-distance dating with my boyfriend Juan, this is the year I’m moving to live with him in Texas!
In the spirit of Valentine’s Day, I thought it would be a good time to reflect on the last 3 years and share what I’ve learned. After trying long-distance relationships with other partners (and subsequently failing at it), I finally got it right this time.
And I learned a lot along the way.
I’m guessing some of my readers may find themselves in this same position, so I thought I’d share some of the things I’ve learned these past three years — the highs, the lows, and everything in between:
It is not all sunshine and rainbows. I say this because I feel like rom-coms tend to glorify long-distance relationships, only showing us the best parts (the romantic date nights and airport reunions). While I do love the adrenaline rush when reunion day is upon us, it does get lonely sometimes. And the sooner you realize this, the better chances you have of navigating it.
Recognize different communication styles, and learn when to compromise. Find middle ground. I’m more of a texter, while Juan definitely prefers phone calls. It’s a lot easier to send quick updates when you text, and I’m the sort who appreciates a “How’s your day?” or some sort of other message to quickly check in with each other while we’re living our separate lives. He’s gotten much better at this over the past three years. At the same time, we’ve been dating long enough now and I’m secure enough now to not always need that. I can do my own thing while he does his, and we don’t text as frequently as we used to.
Learn to adapt under these different circumstances. The first time Juan met my sisters was actually over a FaceTime Video call. It was early 2021, we’d been together for about eight months, and it was peak COVID times so we weren’t able to travel. What to do? Arrange a time for all of us to chat over FaceTime! When he did meet my sisters in person, it was a little less awkward than it might have been otherwise. After all, they had spoken with him before.
Juan’s preference for phone calls helped me get much better at open, honest, and sometimes difficult conversations. All that practice has helped me improve in-person conversations, too. When all you have is your phone to keep you two connected, you get pretty used to talking. And not all those conversations will be super fun and easy. All those phone conversations made it much easier to discuss things later on when we were together in person, and especially when I had my extended visit with him in Houston last April.
Make sure to still incorporate date nights into your lives! At the start of 2022, Juan and I had a conversation about how we could prioritize our relationship a little bit better, and we agreed to do date night once a month. We did movie nights over FaceTime, played games on the Amazon Alexa, and sometimes watched TV shows. Other times, we just talked over dinner. It didn’t really matter what the date was, as long as we had one. And we didn’t miss a single month!
Keep an open mind. I remember telling Juan a long time ago that if anyone was going to relocate, it would be him. Why? Because at the time I couldn’t imagine ever leaving my hometown. I also remember his response: “Okay, but with all due respect, you haven’t really seen Houston yet.” He was right. And I did visit (several times) and I loved it. Now I’ve decided I was wrong to want to stay in my hometown. Living in the same place my whole life doesn’t appeal to me the way it used to. Bottom line: If you enter a long-distance relationship, as scary as it may be to realize this, the end goal is that someone needs to eventually relocate. And that might be you.
This brings me to my last point: I decided to move because I want to move, not just because he lives there. It took me a long time to make the definitive decision to relocate., I wanted to make sure that I would actually like where I lived, and I wasn’t moving my entire life for one person. So, my one-week visits to Houston turned into two weeks, and then a month-long visit in April 2022, just to be sure. And Juan was very patient with me while I processed everything, because he knows it’s a big step.
It’s been quite the journey, but I’m so proud of what we’ve learned and will continue to learn as we embark on this next chapter.
Inaccessible Hospitality: “What An Incredible Conference…That I Had To Leave Early”
Thursday, December 15, 2022, 5:07 PM
There I was, lying on the pullout couch less than 2 feet above the floor, where my mother and my fri…
There I was, lying on the pullout couch less than 2 feet above the floor, where my mother and my friend, Kathy, were strenuously bending over to pull up my pants, put on my shirt, preparing me for PRWeek.
My mom is a trooper. At 62 years old, she’s made countless trips out of town with me – for work, physical therapy, and the occasional vacation – and she’s always been my “number one helper.” But, lifting and rolling my 225-pound body is more than a one mama job. We are lucky to have Kathy.
There I am, lying on a pullout couch and in the Hoyer lift
Getting in and out of bed, or in this case a pullout couch, could be easier. Unfortunately, all the hotels in Chicago we contacted have beds on “platforms,” meaning there is no space between the bottom of the bed and the floor. Why is that important? Well, there is this piece of equipment – a Hoyer lift – that can assist my helpers getting me in and out of bed. Quite frankly, it’s the only way I get out of bed.
Because we couldn’t find a hotel that simply just had space underneath their beds, where the legs of the Hoyer lift could slide under – lifting and dropping me above the bed – I was stuck on the pullout couch.
And, as I mentioned, the pullout couch is literally only 2 feet above the ground. Not. Easy.
My mom was already fighting a strained back, this inconvenience certainly didn’t help – our four-night trip to Chicago, which included two days of a PRWeek conference, a night out with my coworkers, capped off by my first trip to an improv comedy show. It was going to be a great trip!
But, I had to leave early. It was just too much.
I have a great deal of empathy for my caregivers. Knowing that my mom and Kathy were straining so hard literally just to roll me over to get me ready for the conference, we didn’t have the energy to continue for any time after the conference. No dinner with my coworkers. No comedy show.
It was a great conference. I believe the Easterseals + Change for Balance duo gave one of the better presentations, and I made a number of new friends, but the experience was overshadowed by the inaccessibility of the hotel, and the fact that I had to skip time with my colleagues to go home.
Look, I’m one of the lucky ones, and I’m well aware. I have a good paying job, which allows me to afford bringing Kathy along. I have a supportive mom, who will travel with me when I need help. But, even this crew of experienced travelers and healthcare workers couldn’t take it any longer – we headed home.
Even my mother, one of the toughest and “let’s get this done go-getters” made a comment: “It’s no wonder many people with disabilities choose not to travel. This is really tough.”
And that is the reality. Traveling is really tough. Hotels don’t design with full accessibility in mind and airlines are not accessible for people in wheelchairs. Thousands of people with disabilities choose not to risk the travel, whether for work or for vacation, and stay-at-home where it’s safe, where it’s accessible.
And that’s not right. That’s not fair. It’s not accessible. But it’s the reality.
So, what will we do? Do we stay quiet, stay-at-home, and on the occasional burst of courage take a work or personal trip?
I don’t think so. Let’s get loud. Let’s rally for more accessible hotels and airlines. Let’s rally for accessibility.
I’ll keep on sharing my stories and I’ll keep being “loud.” I hope you’ll keep following.
The Federal Website for the Americans with Disabilities Act Got an Upgrade
Thursday, December 15, 2022, 10:01 AM
So much has happened during this holiday season that you may have missed this bit of good news ̵…
So much has happened during this holiday season that you may have missed this bit of good news — the U.S. Department of Justice announced it has launched a new and improved version of the Americans with Disabilities Act website.
I just gave the new ada.gov site a look –okay, a listen! –and the updated version of the website is really easy to get through and understand: it’s written in plain language, the navigation tools are easy to use, and the speech software on my talking computer read it all beautifully. The new site was designed to work well with mobile devices and features links that answer questions about everything from service animals to accessible polling places.
Check it out: visit ada.gov or call the Justice Department’s toll-free ADA information line at 1-800-514-0301 (voice) or 1-833-610-1264 (TDD).
You Might Find Something Accessible to Be Thankful for Within this List
Monday, November 21, 2022, 4:58 PM
This is my favorite time of year. I love reflecting on the year and recognizing what I’m thank…
This is my favorite time of year. I love reflecting on the year and recognizing what I’m thankful for. And then, once Thanksgiving is over, the days start leading up to New Year’s Eve, which symbolizes the closing of a chapter and the beginning of a new one. For me, a new year feels like a clean slate and a fresh start, an opportunity to look at it from a brand-new lens.
I started 2022 feeling cautiously optimistic. I wrote a post like this before last year, focusing on the pandemic. It was very therapeutic to write it all down — to think to myself, “Okay, it was a rough year, but I’m going to sit here and I’m going to find those silver linings.”
This year feels like a breath of fresh air compared to the last two. It wasn’t perfect — no year ever is — but sitting down and finding its silver linings, expressing what I’m thankful for, comes much, much easier in 2022. So here is my reflection in all its glory!
I’m thankful for my friendships. I wrote a post about this recently but truly, I can’t stress this enough. The first thing that comes to mind when I think of this year are my friends, especially the virtual ones. My friends are spread far and wide, and this year I strengthened so many connections and found routines in the day-to-day that really helped with my mental health. I had monthly movie nights with friends. I had virtual coffee dates on Saturday mornings. I had SharePlay sessions with a friend every time an album came out by an artist that we were both crazy for. These small, seemingly insignificant moments got me through some really hard times, simply because they were things that I was able to look forward to.
I’ve grown much more confident in my travel abilities. It’s been six months since my MetroLift experience to the airport and sometimes I still catch myself thinking about it. A year ago, there’s no way I would’ve felt confident enough to try that. I am an anxious traveler, and a year ago, I would’ve let that anxiety get the better of me and insist that we come up with a travel plan that does not involve relying on para-transit, maybe asking a friend to drive me instead. But now? I trusted that Juan knew the system, and I trusted myself that I was independent enough and courageous enough to try something new. And so I did it, and it went well, and I felt liberated enough to write about it.
I stayed in Houston for a month and it was a success! Juan and I have been in a long-distance relationship for so long that we knew that one of us would eventually need to relocate. I’d already fallen in love with the Houston area, but I wanted to make sure he and I could live under the same roof before making the big decision. During that month-long visit we had a lot of open and honest conversations about our relationship, cohabitation, and our expectations. And I did a lot of networking, too. I checked out the transportation system, the way strangers treated me as a person with a disability, and other things like that gave me a glimpse of what my life in Houston might be like. And I loved that life.
I’ve grown grateful to people who take the time to provide equal opportunities for blind and visually-impaired individuals, such as the creators of audiovault.net. This site provides free TV shows and movies guaranteed to be audio described. I prefer this over going to movie theaters — I’ve had far too many bad experiences at movie theaters (sometimes giving us the wrong audio description device, other times giving us a device that didn’t work and needed to be fixed). I’ve watched so, so many more movies this past year knowing I can count on audiovault to provide us with access to accessible content.
I’m thankful for my family’s efforts to include me. Example: during season 41 of the TV show Survivor, CBS started providing audio description. That means that every week now when I watch survivor with my parents, my mom turns on the audio description. That way, she no longer has to describe and can focus a bit more on the show, and I know precisely what’s going on in the show without needing extra help from family members.
Thanks in large part to the YouTube channel “Yoga with Adriene,” I now do yoga every day. I occasionally turn to Sara Beth Yoga. Both of these channels do a great job at describing yoga poses and, if you aren’t familiar with the practice, have beginner videos as well. Therapists have recommended yoga to me for anxiety, and ever since I started doing yoga every day with my mom, it has become part of my day and has done wonders for my mental health.
Lastly, I discovered a good (and very accessible) journaling app called Day One. I wanted to get back into journaling. This app allows me to journal whenever and wherever I am, and I love how it feels to take time to write down my feelings.
Gratitude is something I constantly work on. On bad days, I could always have the mindset that the entire day was awful, and “at least there’s tomorrow.” I’m learning now that there’s always something to be thankful for, even if it takes some time. I think that’s something we should all strive for.
I hope you all have a happy Thanksgiving, enjoy the rest of 2022, and have a hopeful, positive opening to 2023. Happy holidays!