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.
Physical fatigue.
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.
Feeling trapped.
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:
Share decision-making
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.
Anticipate needs
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.
Involve others
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.
Talk
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.
Be flexible
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.
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.
More Resources
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.
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!