You are a caregiver if you provide social or physical support to an aging relative or friend, or to a person who is disabled. Caregivers may make weekly visits to a sick mother still living on her own. They may bring a frail father into their home for care. They may arrange for services for a relative who lives hundreds of miles away.
What caregivers share in common is the fact that they take time and energy from their lives to care for someone who needs their help.
Reactions to Being a Caregiver
Caring for someone on a regular basis is a mixed experience. There are the positive feelings associated with helping others. If you’re caring for your mother, father, or spouse, there is the satisfaction of knowing you are, in some way, returning the support they once provided you.
Caring for a frail relative also has its difficulties. Most caregivers experience some of these feelings:
A sense of isolation, of being alone with a huge responsibility.
Worry or doubt about the quality of the care they are providing.
Guilt that they are not doing enough.
Resentment toward the person cared for.
Anger at the lack of time they have for themselves and their families.
Frustration that this is not what they had planned for this time in their lives.
Fear about how much longer they can keep this up, given all of the other demands on their time.
Confusion about where to turn for help.
A sense of loss because the person they love has changed so much.
Any of these responses, either alone or in combination, can lead to a sense of being overwhelmed. This is both common and understandable. It is important to monitor yourself and be alert to signs of caregiver exhaustion:
Feeling drained of time and energy.
Loss of sleep.
Bottled up feelings of anger or frustration.
Being reluctant to seek outside help.
Being focused excessively on caregiving.
Taking Care of Yourself
There are steps you can take to avoid or reverse caregiver exhaustion. Remember: taking care of yourself is taking care of the person who depends on you. Try some of these ideas drawn from the experiences of many caregivers like yourself:
As long as the person you are caring for is able, involve him or her in the decisions that go along with care; try to be active partners. It will help your loved one retain a sense of independence, while taking some of the burden off of you.
Remember your needs
You need time to get away from your role as caregiver, to relax and to get additional support. These needs may create feelings of conflict or guilt, but again remember: you are taking care of the person who needs you by taking care of yourself.
The earlier you discuss needs, the more time you have to explore possibilities. Then you will feel better about the choices you need to make in the future.
Understand what you are dealing with
Gather information about the specific disease or conditions of the person you’re caring for. The more you know, the better you’ll be able to plan for the future.
Ask other family members and friends for help. People usually are willing and pleased to be asked; they just may not volunteer. Consider a family meeting to brainstorm ideas and to see how to share responsibilities.
Share with someone outside the family about your reactions to caregiving. Use a friend who isn’t close to the situation as a sounding-board.
Just when you think you are in control, something will change. Being thrown off balance is frustrating; try to be ready for change.
Help is Available
As a caregiver, you are never alone. There are many people—family, friends, health care professionals, community services and others—who can help:
Adult day care provides daytime care and social activities for older adults. Programs will vary as to amount and type of care available. Some provide transportation.
Home care offers services that take place in the home. They can include: health care provided by professionals, such as nurses and nurse aides; help with baths, dressing, and eating; housekeeping; and social visits.
Hospice care provides support and care for terminally ill persons who choose to remain at home in the care of a relative or friend.
Legal and financial services include help with preparing a durable power of attorney or other type of health care appointment, a living will, or assistance with financial planning, public benefits, taxes, Social Security, and disability benefits. These services can be provided by skilled volunteers or paid professionals.
Long-term care is available through nursing homes and sub-acute care facilities for temporary or permanent care, especially during periods of acute illness.
Meal programs offer a full range of services, including Meals On Wheels-type programs that deliver meals to older adults at home, as well as group meals served at senior centers, churches, synagogues, or schools.
Reassurance programs provide regular phone calls to check in on elderly persons who live alone, or electronic monitoring devices that signal when help is needed.
Rehabilitation programs provide occupational, physical, and speech therapies through hospitals and long-term care and day-care facilities.
Respite care programs provide temporary relief for caregivers. A person comes into the home for prearranged periods of time, while the regular caregiver takes a break. Some hospitals and nursing homes have short-term, overnight onsite programs.
Support groups provide emotional support, information sharing, and companionship for caregivers. Some groups are condition-specific, such as Alzheimer’s support groups.
Transportation programs provide rides to and from medical appointments, day care, and other destinations.
To Sum Up . . .
You may think that you just do not have the time, talent or resources to be a caregiver. But what it really comes down to is simply “being present” for another. While many aspects to caregiving call upon a wide range of skills—cooking, cleaning, bill paying, etc.—the starting, and ending, point is focusing on another person. We may find at times that we are short on funds, skills, or time, but when caring for another, we need to be long on attention. Holding someone’s hand, pulling the chair closer to the bed, putting everything else aside—that’s the heart of being a caregiver for someone you love.
Care Planner, the Centers for Medicare and Medicaid Services online care decision support tool, helps assess and access support services and options.
The U.S. Administration on Aging offers fact sheets as well as an online booklet entitled “Because We Care” with suggestions, resources, and contact information for people who are caring for an older or disabled family member at home.
The National Alliance for Caregiving was created to conduct research, do policy analysis, develop national programs, increase public awareness of family caregiving issues, work to strengthen state and local caregiving coalitions, and represent the US caregiving community internationally. The Alliance's mission is to be the objective national resource on family caregiving with the goal of improving the quality of life for families and care recipients.
The Alzheimer’s Association website is a good source for information on care strategies for people with Alzheimer’s and related dementias. Sections on day-to-day care, caregiver challenges and coping strategies offer valuable suggestions. The Association also offers a 24-Hour Contact Center, staffed by professionals who understand dementia and its impact. Call (800) 272-3900 with questions or concerns about memory problems, dementia or Alzheimer’s disease.
It’s hard not to notice the media’s attention on COVID-19 and its impact on employment. Since 9.6 mi…
Crystal Odom-McKinney was named one of Chicago Defender’s Women of Excellence Honorees.
It’s hard not to notice the media’s attention on COVID-19 and its impact on employment. Since 9.6 million people lost their jobs in the U.S., it makes sense. However, very little spotlight is put on the 5.7 million workers ages 55 and up that lost their jobs during March and April of 2020 alone. Currently, older workers are 17 percent more likely to become unemployed than their slightly younger peers (AARP). Perhaps there is a sentiment that this issue only concerns matters of retirement. Some may believe that people entering retirement just need to be a little scrappier with their finances, but in the end, they’ll be okay. Crystal Odom-McKinney knows there’s more at stake than that.
Crystal Odom-McKinney is the National Director of the Senior Community Service Employment Program (SCSEP) at Easterseals. SCSEP is the largest federally funded program for older job seekers. After over 20 years managing nonprofit programs and working with underserved populations, Odom-McKinney has a deep understanding about how complex an issue like unemployment can be for communities that often don’t get as much attention. For her work, Odom-McKinney was recently honored at 15th Annual Chicago Defender Women of Excellence Awards, which celebrates local African American women who inspire others through their vision and leadership. During National Employ Older Workers Week, we thought it would be a great time ask a few questions about what this award means to her and why she is so passionate about the work that she does.
What does being recognized as a Chicago Defender Women of Excellence Honoree mean to you?
It is such an honor to be recognized for what I do both inside and outside of work. I give all gratitude to my family, friends, and community, because this is what drives my purpose. One of my favorite quotes by Mahatma Gandhi is “You may never know what results come of your actions, but if you do nothing, there will be no results.”
Why is it important that we recognize National Employ Older Workers Week?
Mature job seekers remain a vital part of the workforce. First, we are living longer healthier lives. We have more options now and retirement is just one. Many return to work to pursue different types of disciplines. That said, mature adults also bring unique value to companies and organizations with attributes such as reliability, dependability and a unique perspective due to life experiences. Employers need to be educated on the myths and truths about hiring workers. For example, retraining or retaining mature workers may be more cost-effective than hiring and onboarding their younger counterparts.
Why are Senior Community Service Employment Program (SCSEP) services important to meet the needs of communities today?
I have many stories from the field where I’ve been told, “this program changed my life.” But there is one powerful story about a job seeker who said this program saved her life. This particular SCSEP participant overcame obstacles like homelessness, unemployment, learning challenges with technology, ending an abusive toxic relationship, and seeking out support for her mental wellness. On many occasions, she felt hopeless and that no one cared. Since enrolling in the SCSEP program, opportunities opened in every way: she now has a home and steady income. She’s learning new skills, is comfortable using a computer, and has support on her mental wellness journey from years of being unheard.
And this is what it is all about. SCSEP is about bringing hope back to those who felt like every door was shut on them. It’s about providing opportunities and options for those who need that added support. It’s about bringing harmony to communities across the country through training opportunities at local organizations. We’re sharing these stories with lawmakers in D.C. to have elected officials reach out to local businesses and encourage the employment of these job seekers. This is the magic of the SCSEP program and why it is so important!
While a headline of “maybe” might not sound super exciting – it’s far better than a “no.”
Person by person, conversation by conversation, email by email – accessible airlines are coming.
10 years ago, after crafting a blog post with the passion and plan to make airlines more accessible for wheelchair users, and wielding a petition with thousands of signatures, my family and I took the 726-mile drive to Washington DC to meet with elected officials and the Department of Transportation (DOT).
With a wickedly connected Legislative Affairs Assistant from Easterseals – an organization I’ve become deeply acquainted with after serving as a Easterseals National Representative in 2012 – we had high hopes for our meetings. I was out to change the world of airline travel for thousands.
While I had a life-changing experience traversing the Capital, navigating our countries most historic office buildings, making my way up and down 110-year-old elevators, waiting anxiously outside those elected officials’ offices, and – the highlight of a lifetime – meeting the architect of the Americans with Disabilities Act, Tom Harkin – to say I left “the Hill” disappointed was an understatement.
I don’t get worked up often, but I distinctly recall having to hold back harsh words of frustration, while an official at the DOT – on speakerphone, mind you – told me all the reasons why a wheelchair on an airplane wouldn’t work. Money. Regulations. Excuses. All while her colleagues in the room looked at me with despair, realizing my sharply rising blood pressure after traveling halfway across the country for this meeting.
In 2012, it was clear to me that accessible airlines weren’t a priority. I got a “no.”
Luckily, there are fellow fighters and advocates out there. My friend, Michele Erwin, and crew at All Wheels Up (AWU) – the only organization in the world crash testing wheelchairs for commercial flights – and a boatload of advocates, who share the same passions I had while staring those DOT officials in the eyes – have accessible airlines a top priority and have pounded the pavement since I was in DC.
There has been a lot of progress. Wheelchair crash testing. More and more meetings with elected officials and airline representatives. There have been studies commissioned at multiple universities – and, with each of these examples – I’m just speaking about the work done by All Wheels Up!
Yes, I buried the lead with this story, but after 10 years of work, and now under the leadership of a fellow Hoosier at the Department of Transportation, and years of advocacy efforts – we are making progress! A hard “no” is now a “maybe,” and while it could be a few years for implementation, the very fact that Secretary Buttigieg is making statements using the terms “wheelchair users on airplanes” makes me teary-eyed with excitement.
While I certainly wasn’t the first to bring up the concept of a wheelchair spot on the airlines, and I only carried the torch for short amount of time, it is nonetheless exhilarating to read a “maybe” in the headlines.
“Maybe” someday I’ll fly to DC to advocate for another worthy cause. Maybe someday I’ll fly to LA to meet with my coworkers. Maybe, someday I’ll finally make my lifelong bucket list trip to Australia.
Disability Committee Twitter Reactions: Why Do People Choose Cruelty Over Understanding?
Monday, August 8, 2022, 12:54 PM
A couple of weeks ago, someone published a tweet making fun of Vice President Kamala Harris for intr…
A couple of weeks ago, someone published a tweet making fun of Vice President Kamala Harris for introducing herself at a Disability Committee meeting by stating her pronouns and describing what she was wearing. The tweet comes with a link to a video so followers can hear for themselves: “I am Kamala Harris,” the vice president says. “My pronouns are she and her, and I am a woman sitting at the table wearing a blue suit.” The poster claimed it was “one of the weirdest things” they’d ever seen and said the video left them LOL=laughing out loud.
Disability advocates who responded to the tweet explained that the vice president was introducing herself to a Disability Committee, and that giving a description of her appearance like that is “accessibility protocol” for people who are blind or visually impaired.
A few followers responded with short replies like “Thanks, I hadn’t thought of that” and “Oh, that makes sense.” What was shocking was seeing how many of the loyal followers took their cue from the influencer and left rude comments about people who are blind or visually impaired — ridiculous replies like, “I wear glasses, do I count?” and “What if you’re color blind?”
Declaring something as “accessibility protocol” and the idea that people choose cruelty over understanding has left me pondering two questions:
What makes people be this mean?
Who decides what qualifies as “accessibility protocol”?
Pretty heady questions, eh? I had to do some research! If you ask me, we could have all the assistive technology and accessible protocol in the world, but if we can’t conquer the fear average people have about disability and address the assumptions they have about us, disability discrimination and ableism will never go away.
Philosopher Bertrand Russell said that fear is one of the main sources of cruelty, and that: “To conquer fear is the beginning of wisdom.” I don’t see enforcing “accessibility protocol” as a good way to conquer the fears people have about us – at its worse, it could leave people worrying about doing or saying the wrong thing and not engaging us at all.
Being blind or having another disability does mean we do some activities differently than someone without a disability, but “helper tools” can make nearly all activities possible. I am blind, and in the past year or so I’ve attended more and more events (live and virtual) where the speakers or participants are told to “self-describe” themselves before starting their presentations. You know, for the “benefit of people in the audience who have a visual impairment.” But asking people to describe what they look like can be awkward. It points out what people who are blind or have visual impairments are lacking.
I haven’t asked many of my friends who are blind what they think of self-describing. They might enjoy hearing people say what they look like, and if they do, that’s great. I’m not going to call them “weird” or make a joke about it just because it’s not something that personally benefits me.
As for the accessibility protocol itself, I’d like to have whoever it is who decides what accessibility protocol is to figure out who needs it, what situations come up where they need it, and think of ways to make changes less complicated. Hopefully, this way of implementing “accessibility protocol” will begin to build bridges.