Cate Osborn never dreamed before COVID hit that she’d be the creator of a thriving social media community of more than two million people in just one year. Known as @catieosaurus online, Cate, who is a mental health advocate, full-time content creator and co-host of the Infinite Quest Podcast, is speaking out about an unusual but important topic: neurodiversity, disability and the gaming community.
Catieosaurus (Cate Osborn) is an ADHD advocate, gamer and educator
From undiagnosed adult ADHD to neurodiversity and sexuality (Osborn is also a Certified Sex Educator) to the lesser-known symptoms of ADHD, Osborn explores topics that don’t usually make it into mainstream discussions around neurodiversity. One particular topic garnered a swell of interest from followers: neurodiversity and accessibility in the gaming community.
An avid Dungeons and Dragons player and co-host of the Infinite Quest Podcast (a top 50 mental health podcast), Osborn’s two passions collided with the topic of neurodiversity and gaming.
“There is a shocking lack of accessibility in gaming,” explains Osborn. “Especially tabletop role-playing games (TTRPG) like Dungeons and Dragons. The more I explored the issue and interacted with players who struggle to feel welcome, the more I realized how vital the discussion is. Everyone should be welcome at the gaming table.”
Osborn speaks out about obstacles for TTRPG players, which can pose challenges to people with physical or mental disabilities. Many organizers may not realize they are leaving players out. Crowded, loud game nights can be difficult for people with sensory issues or auditory processing disorders to participate, for example. Traditional game nights can last between 3-6 hours, which can easily overwhelm or overstimulate a neurodivergent person. In-person game nights can be difficult for some people with disabilities to physically access or keep immunocompromised people away due to COVID concerns.
The challenges extend to PC/console gaming as well, where Osborn is working to encourage developers to consider accessibility when creating their platforms and games. “There is a shocking lack of accessibility in video games,” Osborn explains. Challenges can include lack of captions, fonts that are not dyslexia-friendly or graphics that make it hard for colorblind people or those with visual impairments to play the game. “Of course, individual needs vary from person to person but there are a lot of common issues that arise,” Osborn explains.
Osborn and her Infinite Quest co-host, Erik Gude, just wrapped up a national tour of gaming and comic conventions, including DragonCon, GenCon, Pax Unplugged, GameHoleCon and more, where they conducted workshops and sat on panels about neurodiversity as well as disability and adaptability in gaming, as well as performing their interactive D&D show “ADHDnD Live!”
Osborn is encouraged by the interest she’s seeing from gamers and developers alike for changing the industry to give everyone the opportunity to be a full part of the community and play the games they enjoy — without obstacles.
“Of course, there is no way that a company can make a game 100% accessible for every single person, but our goal at Infinite Quest is to just simply start the conversation, and talk openly about the struggles and challenges that often leave players feeling like they aren’t welcome at the table.”
The Blind Institute of Technology (BIT) announced its partnership with Be My Eyes, an innovative app that provides real-time video assistance for individuals who are blind and visually impaired. Starting on February 2, 2022, the Blind Institute of Technology team will be able to field calls from the Specialized Help section of the app.
“For too long blind and visually impaired (BVI) professionals settled for positions much lower than their education and skills due to the lack of understanding of our capabilities. BIT works with talented disabled technology professionals and corporations to make sure this does not continue. A major component of this is technology,” says BIT’s Director of Talent, Kristy Schenderlein. “The partnership with Be My Eyes provides BVI professionals with a valuable tool to be successful in their chosen careers.”
At a time when technology is making it possible for everyone around the world to connect, BIT will be able to provide remote guidance and consultation to the disabled for employment opportunities. BIT is leading the way for technology companies to connect with potential employment candidates and deliver services in a whole new way.
“BIT has a very specific, important role in our community,” said Will Butler, VP of Community at Be My Eyes. “They recruit, train and place talented blind and low vision professionals for careers in all aspects of business, including IT, and they educate corporate America about the meaning of accessibility. We’re thrilled to see them joining Be My Eyes as our latest partner and can’t wait to see how they use the platform.”
Now with more than 5.5 million users and a growing family of company partners, Be My Eyes is one of the largest “micro-volunteering” platforms in the world – with its more than 5 million people on call at all times to assist those who need an extra pair of eyes at short notice.
Life can be busy with tons of priorities… work, kids, friends, school, medical/healthcare needs, caregiving, volunteering, advocating, oh and your relationship too. Sometimes we’re so scheduled with demands that we fail to include time for much-needed self-care. It’s often undervalued but self-care benefits the mind, body and soul. Interestingly enough, the same concept of self-care can apply to our relationships. Just as we care for ourselves, couples who commit to some TLC may boast individual and collective benefits that’ll help to keep (or improve) a healthy connection and, ultimately, enhance the minds, bodies and souls of both partners in the relationship.
There are so many facets of relationship building. You’re familiar with common self-care practices for personal gain, so simply shift those ideas to a twosome approach.
Here are 30 self-care rituals for all couples – able-bodied, interabled and disabled:
For Your Minds
1. Get Back to Nature.
Countless studies have concluded that nature is good for overall health. There are plenty of couple activities to enjoy outdoors. Think about energetic options, like adventuring within an accessible state or national park, and also more calming options, like picnicking. To explore a new self-care ritual together, try earthing (also known as grounding — a word that perfectively describes this literal practice of using the ground to figuratively stay grounded). On your next romantic picnic, kick off your shoes and let your bare feet stabilize on the electron-enriched earth. Feel the breeze on your bodies and gaze up to peacefully cloud-watch. Scientists believe that earthing reduces chronic pain, inflammation and blood pressure, while increasing energy levels and sleep quality.
FYI, the National Parks Service (NPS) has several pass programs that grant access to more than 2,000 federal recreation sites across the nation. Check out the Access Pass, a FREE, lifetime pass available to U.S. citizens or permanent residents that have a permanent disability.
2. Try Tandem Meditation.
Meditation tops self-care lists for many. It’s an excellent exercise centered on relaxing the mind and finding clarity. Perhaps you perceive meditation to be a solo thing, but it doesn’t have to be. Try sitting in a traditional lotus position in alignment with your partner by facing each other with your knees touching, sitting side-by-side, sitting back-to-back or any position to feels comfortable to your bodies. Maybe hold hands or position your hands over each other’s heart to feel the beat and breath. There’s actually a guided practice called Love-Kind Meditation, by The University of California Berkeley, which works really well for couples. It includes suggested phrases to recite to one another, such as “May you live with ease, may you be happy, may you be free from pain.”
3. Unplug to Plug In.
Reboot yourself and your relationship by powering down! We’re all guilty of allowing mobile devices to distract our attention. A Time magazine article titled “How Your Smartphone is Ruining Your Relationship” addressed how smartphones can be a romance killer. It stated, in part, that people who were more dependent on their smartphones reported being less certain about their partnerships; and people who felt that their partners were overly dependent on their devices said they were less satisfied in their relationship. Yikes! Make an effort to be present with your partner and not focused on a cell screen. Whether at the dinner table, on the couch or on date night, try switching your phone to airplane mode or turn it off altogether to avoid disruptive notifications of social media and email.
4. Stretch Beyond Your Comforts.
Routine can be good, and necessary in some aspects, but too much consistency can put us in a rut. To keep your relationship fresh, be open-minded to trying new things. For instance, stray from the typical date night dinner-and-a-movie combo. By holding off on your stall go-to, you’ll get a taste of new experiences and eat up fresh connective opportunities. Here is an idea: Make a date night jar inclusive of ideas that stretch beyond your comfort zone.
5. Minimize Your (Online) Social Circle.
It’s wonderful to have a large circle of friends. However, thanks to social media, we stay connected to people who, unfortunately, bring negativity into our lives. Think about it: How many times have you read a post – political, religious, disability-focused, etc. – that rubbed you the wrong way and, thus, shifted your mood or mindset? That’s happened to me and I ended up talking in a less than positive light to my partner. Ugh, why waste a conversation on negativity? Encourage one another to limit that negative energy by ‘unfollowing’ certain people on social media. When you do this, you’ll remain ‘friends’ on the platform but won’t see their posts. Additionally, plenty of articles (see Psychology Today) outline how social media can hurt a relationship.
6. Read a Book.
Personally, the perfect self-care afternoon is curling up on the couch with a good book, a fuzzy blanket and a hot cup of coffee. I can easily integrate my partner. We could read a book aloud to each other, perhaps relationship-focused, romantic poetry or some random fiction just for fun. Or, we could listen to a book on tape or a podcast.
7. Set Goals.
Self-care isn’t just about manicures and bubble baths. Challenging yourself and challenging your partner is definitely a form of self-care! Studies show that we’re more likely to achieve goals when aided by the help of another. That doesn’t just apply to a workout buddy… that supportive approach can apply to any goal, whether personal or collaborative. And isn’t your partner your best support person? When one partner sets a goal, be mindful to encourage his/her/their efforts. That can mean participating or just offering reassuring words. Also, consider establishing couple-specific goals to achieve together. You’ll be able to work as a team and experience a shared self of accomplishment. Talk about relationship building!
8. Take Your Time.
Grant yourselves permission to slow down, enjoy the simple things and, in turn, enjoy each other’s company. With the hustle and bustle of life, we tend to look for shortcuts but, sometimes, the long and slow road is better. How about this… On your next couple’s road trip, take a beautiful scenic road rather than the congested highways which can put you in a bad mood. Back roads have a way of bringing couples back to meaningful conversation too.
9. Conquer the To-Do List
Set yourselves up for success through organization and honesty! There are personal to-do lists and shared to-do lists. For personal efforts, I’ve learned that I respond better to old-school written checklists. When I just set a Google calendar appointment for myself with time blocked for a to-do item (like call the doctor’s office to book an appointment or something), I tend to easily hit snooze or push back the date. Once I physically write out a list and leave it on the counter, the in-your-face visual reminder is effective and I get it done. It feels good to literally cross something off my list with a pen. I have started making written lists with reminders for my husband too and, funny enough, he also gets more done this way. So simple, yet effective! Regarding implementing this further in our relationship, there have been times when I’ve felt that I’ve asked my husband to do something (insert any chore) a million times and he puts it off. That creates negative energy between us because I get annoyed. He starts to feel that I am nagging and I start to feel resentful that I have to nag him. To avoid this, I strive to be direct and sometimes share with him why I think something is a priority and help him set a timeline. Once I’ve expressed myself clearly, he has a better understanding of the reasoning behind my ask and understands that I’m not just nagging. We’ve better communicated, appreciated each other’s perspectives and conquered the to-do list.
10. Clean House.
Freshen things up as it can do much more than tidy up your physical space. Decluttering can help you improve organization and, thus, improve functionality within your home. Plus, a clean space makes you happier. Seriously! Sure, nobody is thrilled to tackle chores but nobody likes a huge pile of clothes wasting space in the closet or a stockpile of expired cans in the pantry either. Cleaning, of course, helps to eliminate germs. Wouldn’t you rather use your bed together for something else rather than be in bed with a germy cold? You can make cleaning fun if you do it together, I swear. Crank the tunes and have mini-dance parties or singing sessions in between sweeps and wipes.
For Your Bodies
1. Pamper Together.
Perhaps your daily cleansing regimen is just washing your face, but self-care of one’s body can and should go way beyond that. Ladies, if you think your guy won’t be up for pampering, you may be wrong. Think of the laughs you’ll have as you paint goopy facial masks on each other. And pedicures are lovely for everyone’s tootsies. Run a warm bath for a rejuvenating soak. Incorporate salt rubs, oils and body lotions. Your bodies will get clean and silky smooth which is an invitation for lovey-dovey time.
2. Support Personal Self-Care Pampering Too.
Sometimes the best way to treat your partner is to allow him/her to indulge in whatever self-care ritual brings him/her joy. We’re talking basics here. For example, I love to stand in a hot shower for a long time. I mean practically scorching, room completely filled with steam and so long that the water heater runs out. Yup, I have some sensory quirks. My husband knows that those ten minutes are my feel-good escape (especially since we have young children with special needs and I am likely covered in some sort of kid-caused yuckiness). He splurges a bit on hair care. I think he overpays for haircuts and styling products but, alas, it’s his favorite self-care thing so I just offer compliments of his well-groomed locks.
3. Be Workout Buddies.
Physical fitness is an essential part of healthy living and, if applicable, adaptive equipment and gyms are available. Since you’ve committed to a life together, collaborate on exercise-focused self-care to achieve optimal health. This is important as some people with disabilities can find it more difficult to eat healthily, control their weight and be physically active. Your partner makes your heart skip a beat and, so, incorporate cardiovascular exercises to work your hearts! These things can make for great dates, such as dancing, biking or however you like to get your sweat on. On the flip side, since healthy relationships are all about balance, don’t forget to explore yoga, stretching and relaxing practices.
4. Add Color to Your Life (and Plate).
How we choose to fuel our bodies is another self-care consideration. Isn’t it beautiful to see a rainbow in the sky while cloud-watching with your love? Well, strive to “eat the rainbow” with your partner too. That means a bright meal featuring diverse hues, rather than a bland brown and white dish (yup, meat and potatoes won’t cut it). Different nutrients are found in different colored vegetables and fruits. For example, orange/red (i.e. sweet potatoes, carrots) provides beta-carotene which is converted into vitamin A; and green (i.e. broccoli, spinach) delivers fiber and vitamin C. And in an effort to stay hydrated, use the same approach with water consumption by infusing H2O with berries, cucumber and citrus fruits.
5. Inhale a Soothing Scent.
Aromatherapy uses essential oils distilled from various plants. According to the Mayo Clinic, it stimulates “smell receptors in the nose, which then send messages through the nervous system to the limbic system ─ the part of the brain that controls emotions.” Studies have shown that aromatherapy might reduce anxiety, depression, headaches, pain (especially for people with kidney stones or osteoarthritis), and also improve sleep and quality of life. Vanilla is believed to be arousing, lavender is soothing and peppermint can stimulate. Use candles or an essential oil diffuser to let aromatherapy naturally put you in great moods.
6. Be Intimate.
During sex, oxytocin is released which promotes more restful sleep. Science aside, I can attest that my husband can achieve snore status pretty quickly post-rendezvous! Sex can boost positive emotions because, well, it feels good to be desired. Some couples, able-bodied and interabled alike, even schedule sex to ensure that this self-care ritual happens often. This can be helpful for partners that have a catheter (or prefer extra prep time).
7. Sleep Together.
OK, this time we’re talking about actually snoozing. Sleep… seems like such a simple thing but most Americans aren’t catching enough zzz’s. There are tons of benefits to being well-rested, such as increased productivity and a stronger immune system. Instead of staying up for another episode during a Netflix binge, crawl into bed together and sleep.
8. Have a Cup (or Two).
Coffee makes couples happy… literally. Forgo decaf because caffeine has been shown to trigger the production of dopamine in the brain and, thus, trigger cheeriness — a lovely ingredient indeed. Plus, café dates are easy and delish.
9. Give (and Receive) a Massage.
Finding time to unwind with your partner without worries flooding your mind is tricky. Schedule a couple’s spa day to indulge in professional massages, which usually come with other amenities like access to a sauna, steam room and lounge. This type of TLC is amazing, right? In between spa splurges, give each other massages at home to work out kinks and strive for chill status.
10. Be Gentle.
Gentle touches are ways to offer love and show that you care. Intimate embraces don’t have to be reserved for the bedroom. I’m not talking major PDA, but rather subtle touches of affection. Hold hands, hug, give sweet kisses on the cheek or forehead, caress his/her/their arm, etc.
For Your Souls
1. Laugh Together.
Laughing stimulates hormones called catecholamines which in turn release endorphins that positively aid happiness and relaxation. Laughter really could be the best medicine! And benefits include stress reduction, muscle relaxation, lowered blood pressure and strengthened immune system. Find ways to laugh when alone and when together. Comedic entertainment is an option but go further by talking about funny memories you’ve made together.
2. Write it Out.
The practice of releasing and recording feelings, memories and the likes can be fulfilling and helpful in many ways. For example, the trend of ‘gratitude journaling’ helps users realize and appreciate life’s gifts that might otherwise be taken for granted. Journaling is often a solo practice, yet couples journaling is a way for partners to document their love stories and deepen their relationship in the process.
3. Go Solo.
Being a part of a loving duo is wonderful, but it’s totally fine (and maybe even crucial) to snag solo time now and again. Schedule something that makes you feel happy and nourishes your soul. Read a book in the park, spend the day focused on your hobby, stroll a museum, etc. Connecting with your partner is one priority, but so is reconnecting with yourself. When you reunite, you’ll be in a great mood which, of course, is contagious.
4. Cuddle.
Researchers say cuddling is highly beneficial. Snuggling up will again release oxytocin and promote overall happiness. For personal care, you can wrap yourself in a cozy blanket and nap. I love my weighted blanket! Therapeutic weighted blankets, wraps and lap pads may especially benefit people with autism, sensory processing disorder, ADHD, hyperactivity and other disabilities. They provide gentle pressure to produce a calming and relaxing effect. And cuddling with your loved one can improve your connection through non-verbal communication and intimacy. So assume the spooning position!
5. Do Good to Feel Good.
Volunteerism, activism or the act of doing something good makes us feel good and improves our mental state. How cool is it that a selfless act can be a self-care opportunity?! Spend time with the person you love doing do-good and feel-good date activities. There are countless ways to make a difference within the disability community and beyond.
6. Check In On Emotions.
You likely ask your partner simple questions, like “How was your day?” Take your interest further and allow each other to express emotions without judgment. Author and mindfulness coach Kristen Manieri shares how two questions make all the difference in her relationship: What would you like to be acknowledged for? What would you like me to know about your life? And for some couples, attending counseling sessions is a way to stay in a positive state before problems arise.
7. Ask for Help.
Some perceive asking for help as a sign of weakness but it’s really a sign of strength. It’s great to push aside the fear of judgment and involve others when you need a hand. Cut yourself some slack! No one is perfect and everyone has different strengths so another person may be better suited to advise on the issue at hand. Plus, healthy relationships are all about the balance of give and take. Sometimes needs are met via 50-50 participation and other times one steps up a bit more, especially if caregiving is a factor. Your partner is the person you trust most so feel comfortable asking for help when needed. I’ve learned that if I want it done “right” (aka the way I would do it), I need to be direct and specific with my husband. He approaches things differently than me and he certainly can’t read my neurodiverse mind so asking for help and effectively communicating go hand-in-hand. People like feeling useful and your partner will likely not reject your request.
8. Be Adventurous and/or Travel.
Self-care is about finding ways to take care of yourself and that includes identifying what makes you happy. New adventures and exciting life experiences are just that. Odds are you aren’t going to achieve your bucket list if you’re living a couch-potato existence. Allow your mind (or minds to include your partner) to grow through travel, for instance. The wonders of our world are sure to impact your mind, body and soul. On vacation, incorporate downtime into your agenda. I have a tendency to overschedule which increases my stress and, thus, defeats the goal of a relaxing trip. FYI, AirBnB recently improved its accessibility search features.
9. Pray.
Opening one’s heart to a higher power through prayer or spirituality can be powerful. Have you heard the statement “couples who pray together stay together?” A study conducted by the National Survey of Religion found that people in same-faith relationships and partners who attended services regularly were more satisfied with their relationship, according to HuffingtonPost.
10. Make Date Night a Routine!
You may already consider your relationship to be happy and loving, but there’s always room for improvement. Funny enough, your date night can work as a self-care ritual. Countless studies have proclaimed date night as beneficial, like the Date Night Opportunity report published by the National Marriage Project at the University of Virginia. It found that regular date nights add value to relationships by generating “higher levels of communication, sexual satisfaction and commitment” among couples.
Did we leave out a ritual that works for you and your partner? Tell us what other self-care rituals are on your list!
Stroke survivors and caregivers can now access a user-friendly guidebook featuring diverse approaches that aid stroke recovery. The new 124-page publication, titled Overcoming Stroke: The 5 Keys to Victory, is the fourth book written by world-renowned stroke recovery advocate Valerie L. Greene.
Greene personally overcame grim odds in the aftermath of two debilitating strokes that nearly took her life at just 31 years old. Acknowledging that her miraculous survival and recovery could impact others afflicted by stroke or any disability, Greene crusaded for years to support healthcare advocacy, programs and education.
The lifelong Greater Orlando resident eventually turned her vocation of sharing hopeful insight into an avocation, with the launch of two recovery-focused companies: Global Stroke Resource and Bcenter. Through Global Stroke Resource, Greene earned the distinction of “America’s Stroke Coach,” as she traveled the country to provide personalized guidance to stroke survivors, their loved ones and the disability community-at-large. Through Bcenter, Greene established a digital resource hub and also facilitated stroke survivor support group events.
“I made up my mind that I was going to do whatever it took to overcome. By the Grace of God and wisdom to trust and take action, I made a remarkable recovery. This is what I want for all of you,” Greene, now 58, declares to survivors of all abilities.
Because of safety precautions associated with the coronavirus pandemic, many face-to-face interactions, including Greene’s stroke coaching services and support group meetings, came to an abrupt halt. Greene wanted to ensure that survivors seeking direction could continue to easily access her time-tested methods regardless of present-day hurdles.
“This book is basically like receiving stroke coaching sessions, but in a convenient format that engages aspects of the mind, body and soul,” Greene describes. She believes the condensed written form will also grant access to a larger, more diverse audience. “I feel like everyone deserves to know life-changing answers, regardless of one’s financial means to hire a private coach,” she says.
Overcoming Stroke highlights an array of both traditional and non-traditional remedies and state-of-the-art technologies, all presented with Greene’s uplifting storytelling along with compelling images. “It’s not just one pill or one rehabilitation stint… it’s a comprehensive combination of things,” Greene tells AmeriDisability of Overcoming Stroke’s celebration of natural remedies specially geared toward healing at the cellular level. “These keys also help with secondary prevention because they drill down to the root cause,” she says.
Stroke is a leading cause of death in the U.S. and is a major cause of serious disability. More than 795,000 people in the U.S. have a stroke each year, according to the Centers for Disease Control. Sadly, someone in the U.S. has a stroke every 40 seconds, and someone dies of a stroke every four minutes.
Overcoming Stroke: The 5 Keys to Victory is written with all survivors in mind, regardless of whether their stroke event occurred recently or decades prior. To order a Kindle or paperback copy, head over to Amazon. Lastly, Greene says her future aspirations include launching online stroke recovery workshops.
For similar content from AmeriDisability, read these:
Building on its mission to offer gear and apparel to all people seeking outdoor adventure, Eddie Bauer is excited to introduce the BC Flyline Kit. The first outerwear kit of its kind to be available to consumers, the BC Flyline Kit is specifically designed to meet the needs of adaptive skiers who use a mono or bi-ski to participate in alpine skiing.
Alpine sit skiers require a molded plastic bucket mounted to one or two skis with handheld outriggers for stability, allowing people with disabilities to ski. Eddie Bauer worked closely with Trevor Kennison, one of today’s most influential alpine sit ski athletes, to design and test the jacket and bibs at every stage of the development process. The BC Flyline Kit is available at eddiebauer.com.
“Designing technical gear and apparel for all adventure seekers is a pledge we take seriously and is what drove us to fill the hole in the market facing sit skiers. Lack of access to adequate gear should never prevent someone from getting outside,” said Damien Huang, Eddie Bauer CEO. “We were lucky to have Trevor as a partner throughout the development process. His expertise and feedback were invaluable to the design team.”
The BC Flyline Kit is a waterproof, insulated ski jacket and bib designed to meet the unique needs of sit skiers. It uses the highest quality materials and construction techniques. Features like extra insulation in the legs, articulated knees, full-range sleeves, and a high back on the bibs were incorporated based on the feedback and direction provided by Trevor.
“After years of skiing in traditional jackets and bibs, it became apparent that ski outerwear was not built for someone to use them in a sit ski like I was,” said Trevor. “Working with the design team at Eddie Bauer allowed me to make sure this kit had all the features I had ever wanted. There were numerous rounds of testing and fine-tuning. I would take the kit into the field for a couple of days, then provide photos and notes on small adjustments for the designers to make until it was the perfect kit for a sit skier.”
In addition to being available at eddiebauer.com, the BC Flyline Kit will be promoted across Eddie Bauer’s social channels and with special video footage playing in-stores.
Feature image: Trevor Kennison in the Eddie Bauer BC Flyline Kit he helped design to meet the needs of adaptive skiers who use a mono or bi-ski to participate in alpine skiing.
Caring for an aging parent can be stressful beyond belief. According to an article published in the American Journal of Nursing, “Caregiving has all the features of a chronic stress experience: It creates physical and psychological strain over extended periods of time, is accompanied by high levels of unpredictability and uncontrollability, has the capacity to create secondary stress in multiple life domains such as work and family relationships, and frequently requires high levels of vigilance.”
It only makes sense that this strain can take a serious toll on caregivers’ relationships with their significant others. Understanding the impact this role has on you and your spouse is the first step in ensuring your marriage remains a top priority even in the most challenging of times.
How Caregiving Affects Marriage
Countless members of the Caregiver Forum on Agingcare.com have asked questions and participated in discussions about balancing marriage, stress, caring for aging parents and caring for themselves. Money, time, energy and patience are typically in short supply for these hardworking folks. After providing quality care for their loved ones, there is often little left over to “give” to other important people in their lives. In fact, family caregivers are stretched so thin that self-care is frequently put on the back burner.
This extended absence of physical and emotional self-care is a recipe for caregiver burnout. Common signs of caregiver burnout include depression, anxiety, mood swings, withdrawal and physical health issues like fatigue, headaches and compromised immune function. Burnout not only harms caregivers but also impacts their relationships with immediate family members like spouses and even children.
When a family caregiver’s own well-being is prioritized behind everyone else’s, resentment is bound to set in. On the other hand, spouses often feel that caregiving has come to dominate day-to-day life, upending long-standing routines and dynamics. If both spouses are involved in providing care, both can wind up neglecting themselves and their relationship with each other. Likewise, if one spouse is primary caregiver for an aging parent and feeling unsupported by their partner, resentment may build from both parties.
credit: AgingCare.com
As caregiver stress increases, tension mounts and healthy communication dwindles. New or longstanding weaknesses in a marriage may emerge under these difficult circumstances. A couple may feel they are arguing more, emotionally distant, physically disconnected, and struggling to cope with everyday decisions as well as those related to a parent’s care needs. It’s best to act on these warning signs early on before both spouses wind up feeling like they’re being shortchanged.
Addressing and solving marital problems can be a considerable undertaking, even for those who aren’t already overwhelmed with caregiving responsibilities. It is crucial for you and your spouse to examine the current situation and the extent to which your wants and needs are being met in your marriage and life as a whole. The next step is to recognize where you both can make changes to better accommodate these goals.
Tips for Balancing Marriage and Caring for Aging Parents
While the things necessary for maintaining a strong marriage may seem obvious, it is easy for them to fall by the wayside when life gets too hectic. This is normal to an extent, but neglecting a relationship over the long term often results in irreparable damage and can lead to divorce. Every couple could use a refresher from time to time, especially those who are also juggling caring for aging parents. Use these tips to keep your marriage strong and prevent caregiver burnout from overwhelming both of you.
Don’t procrastinate.
When you are stressed, it can seem like there is never time to talk about your feelings, so you keep them bottled up inside. But, when things go overlooked for too long, they tend to explode. Timing is important when tackling prickly subjects, but avoid putting off discussions. You might have too many doctor’s appointments to accompany your parent to this week, but next week the kids might get sick. Before you know it, “next week” never comes. If you struggle with finding the right time to have conversations, make a standing appointment for you and your significant other to check in with each other. It sounds silly, but it will help ensure you communicate regularly and avoid blow-ups.
No topic is off-limits.
Married couples must be able to talk about everything. Trust each other. Talk about whatever is on your mind and allow your spouse do the same without judgment. All subjects are fair game—the good, the bad and the ugly.
Remember to listen.
When you’re having a conversation, make sure you aren’t the one doing all the talking and avoid interrupting your spouse. Be sure to really listen to what they are saying. Sometimes it’s helpful to repeat back what they say in your own words to ensure there is no confusion or misinterpretation.
credit: AgingCare.com
Don’t wallow in self-pity.
No problem has ever been solved by feeling sorry for yourself or your situation. The old saying rings true: happiness comes from looking at the glass half full, rather than half empty. In reality, this is easy to say, but much harder to put into practice. It takes a conscious effort to examine your thoughts and turn negative voices into positive ones. Constant negativity can sap the energy and lightheartedness out of any relationship, even the most important one: the relationship you have with yourself. Mindfulness exercises, self-help books and therapy can help you practice gratitude and learn to view life through a more positive lens.
Don’t cast blame.
The blame game is very destructive. There is a natural tendency to place blame on those closest to you during trying times, but truthfully there is usually no one person to blame for this situation. When it comes to caregiving, someone has to take care of aging parents. Out of all the options available for elder care, the job fell to you. Rather than casting blame, find ways to work as a team with your spouse and others to improve your predicament.
Practice teamwork.
When you first fell in love, you felt it was the two of you against the world. You had each other’s back. Remember your vows to support each other through thick and thin, through tough times and uncertainty. This teamwork concept holds true now more than ever and applies to the rest of the family as well. If you have kids and they are old enough to do chores, make sure they get done. Everyone should contribute and help pick up slack that occurs from time to time. If your spouse feels that you two rarely get quality time together anymore, clarify that their assistance with a few tasks would free up some time for you to reconnect. Making a family work is difficult even in the best circumstances, and it becomes more challenging when caregiving is thrown into the mix. Remember, many hands make light work. The more help you have, the easier it will be to ensure the household is running smoothly and the more likely you are to have free time for other tasks.
Give each other space.
Everyone needs some alone time. Allocate some time in your schedule to be alone with your thoughts and refresh your spirit—and allow your spouse to do the same. If you aren’t able to leave the house for your “me time,” find your own solitary space within the home. “Man caves” and “she sheds” have become popular for a reason. Use the office, the den, the back porch, your bathtub, even the basement and turn it into your own personal retreat. You must take care of yourself before you can take care of others. This applies in marriage, parenting and caregiving.
Keep the flame alive.
Make time for fun and romance together, and make it a top priority. Couples should be able to share the burden of tough times together, but it is equally important to spend some carefree time enjoying each other’s company. Carve out time for a date night, a long walk together or just a few extra minutes of snuggling in bed in the morning. If your parent’s care needs make such an arrangement seem impossible, then bring in back-up. If friends or family can’t or won’t help, seek respite from professional caregivers—even if it’s just for a couple of hours here and there. In-home care and adult day care services are both viable options. While it may be difficult to pay for respite, the money is well spent if it allows you to nurture your marriage.
Keep up the simple things.
Simple, loving gestures matter a great deal in a marriage. Try to do a small act of kindness or love every day. Cook your spouse’s favorite dinner, acknowledge them for something they’ve done, or compliment them to let them know how much you care. Yes, it takes some effort to establish the habit, but the payoff is worth it.
credit: AgingCare.com
Build a support network.
You and your spouse do not have to tackle caregiving on your own. Ask for support from family and friends. Seek help from your neighbors. Consider hiring professional assistance. Don’t be shy about requesting help; you can’t do it alone.
Stay healthy.
Taking steps to maintain your mental and physical health is crucial for caregivers. Exercise as often as you can, eat healthy, keep your stress levels in check and don’t forget your annual doctor’s appointments. Ideally, your spouse should support you in this endeavor and make their own health a priority as well. Being proactive about your health will ensure you feel your best and are prepared to withstand all the challenges that life and caregiving may throw your way.
Keep in mind that any disruption in a longstanding family pattern can be difficult for everyone to adjust to. It will take time to settle into the new normal and make changes to get it “right.” Patience and understanding are crucial for working through this difficult situation together. Just remember to make yourself, your spouse and your children a priority while caregiving. If you need help communicating and keeping these priorities straight, professional counseling—individually and/or as a couple—can be incredibly beneficial.
The article, 11 Ways to Keep Your Marriage Healthy While Caregiving by Marlo Sollitto originally appeared on AgingCare.com. AgingCare.com is an online resource that connects family caregivers, shares informative articles, provides answers and support through an interactive Caregiver Forum, and offers search capabilities for senior living options for elderly loved ones.
The purpose of the awards is to raise the visibility of financial institutions’ and community-based organizations’ activities that are promising and exemplary in support of low- and moderate-income (LMI) individuals with disabilities to improve their financial stability and health and be more active participants in adding value to our nation’s economy.
“CDICD is proud to announce the Second Annual Inclusive Community Development Award winners. Each of our winners have created unique initiatives that support people with disabilities in low- and moderate-income communities,” said Michael Roush, Director, Center for Disability-Inclusive Community Development. “All of our winners demonstrated innovation, impact and inclusiveness that contributed to the vibrancy of their communities, including economic and employment opportunities for people with disabilities.”
True Link and Sunrise Banks created the ABLE Visa Prepaid® Card with the view that high-quality spending tools are particularly critical to maximizing the benefits of ABLE accounts. The partnership shares a common goal: to increase the independence and financial capability of ABLE account holders by ensuring more account holders have a card in their name to make day-to-day purchases using their ABLE funds.
photo credit: National Disability Institute
“True Link is committed to offering high-quality financial services built for people with disabilities and their loved ones,” said Kai Stinchcombe, CEO, True Link. “We’re proud to serve thousands of ABLE beneficiaries and to promote their autonomy and financial well-being through our services. National Disability Institute is a true leader in identifying initiatives that positively affect the futures of people with disabilities and their families, so it is an honor for True Link’s efforts to be recognized through the Inclusive Community Development Awards.”
“We’re excited to partner with True Link to help provide greater financial independence for consumers,” said Bryan Toft, Chief Revenue Officer, Sunrise Banks. “The ABLE Visa Card is a product we’re proud to support.”
Life Asset enables low-income entrepreneurs in the greater Washington, D.C. area to start or expand a business by providing microloans (a loan less than $5,000) and financial training to those unable to access loans elsewhere. By coupling microloans with comprehensive financial training and peer support, Life Asset equips clients with the tools they need to overcome barriers to economic opportunity, create jobs for themselves and others and become financially self-sufficient. Approximately 12 percent of Life Asset’s clients are people with disabilities.
“Life Asset is grateful for this recognition because it inspires us to continue our work providing microloans and business training to help people with disabilities create jobs and build their financial resilience through small business ownership,” said Markus Larsson, Founder and Executive Director, Life Asset. “There are many others who deserve to share in this award – primarily the many hard-working entrepreneurs with disabilities who provide invaluable products and services through their businesses. We look forward to continuing working with NDI and our partners to ensure that the needs of entrepreneurs with disabilities are included as we work to expand access to small business loans and training in the Washington, D.C. area.”
photo credit: National Disability Institute
Goodwill of East Texas provides job training resources and wraparound support services, including programming strategically designed to increase independence and financial stability for individuals with disabilities. Prosperity Bank began partnering with the organization in January 2017 to provide financial educational workshops to Goodwill staff and program participants, many of whom were underbanked and lacked basic banking skills. More than 200 Goodwill of East Texas staff and program participants are served annually through this unique partnership.
“Receiving this award from the Center for Disability-Inclusive Community Development validates the work that our committed staff perform daily,” said Kimberly B. Lewis, CEO, Goodwill Industries of East Texas. “Serving and working in an inclusive community breathes life into everyone involved. A diverse and inclusive community equates to more dollars in the community by 30 percent annually, as people with disabilities contribute as both employees and customers at local businesses. Socially, an inclusive community means that people have a sense of belonging. We all need that now more than ever.”
“Community involvement has always been a core value at Prosperity Bank, and it is an honor to be recognized for our efforts in this way,” said Scott Voland, Director of Sales Development, Prosperity Bank. “We are grateful for Goodwill Industries of East Texas and all the other organizations that have joined us in giving back to our community last year. Together, we can make a real difference in the lives of those around us.”
Nominations were evaluated on innovation, responsiveness, collaboration and impact in building a better financial future for people with disabilities and their families. Focus areas included: workforce development, affordable and accessible housing, small business development, financial literacy and counseling, adaptive technology, digital literacy and digital access.
The Center for Disability-Inclusive Community Development works to improve the financial health and well-being of low- and moderate-income individuals with disabilities and their families to reexamine the approaches, roles and responsibilities of stakeholders to proactively address financial access and economic opportunity needs of people with disabilities through community development. A key component is increasing awareness and usage of the opportunities and resources available under the Community Reinvestment Act (CRA).
Launched in 2019, the Center is focused on the importance of inclusive community development activities. These include improving how the financial, community development and disability communities can work more closely together to respond to current financial and economic challenges and bringing attention to positive examples of CRA investment, lending and service that support financial resilience for LMI people with disabilities and their families. In the next year, the Center’s work will remain focused on improving the financial health and well-being of LMI individuals with disabilities and their families by increasing awareness of community development opportunities and usage of the resources available under the CRA.
National Disability Institute is the first and only national organization exclusively focused on the financial health and wellness of people with disabilities and their families. With an emphasis on poverty reduction, financial capability and financial inclusion, NDI continues to build extensive relationships between the disability and financial communities to focus on systems change.
To learn more about the Center for Disability-Inclusive Community Development and its activities, visit www.cdicd.org.
People have basic physiological and environmental needs, such as food, water, air and shelter. We also have emotional needs too, like the desire to love and feel loved. We all crave connection. And, of course, that longing is the same among all people (with and without disabilities). We all seek out different types of relationships – friendships, romantic partners, parent-child bonds, etc. – because they increase our purpose, self-esteem, joy, sense of belonging and much more. It’s simply human nature.
A Healthy Love
Psychology professor and author Barbara Fredrickson, Ph.D., said in her book Love 2.0, “Love, as it turns out, nourishes your body the way the right balance of sunlight, nutrient-rich soil and water nourishes plants and allows them to flourish.” This simple analogy makes so much sense to me (and I don’t even have a green thumb)!
In a Harvard study that spanned over 80 years and included thousands of participants, researchers found that the number one predictor of health and longevity is our relationships and, more importantly, how happy we are in our relationships. Close relationships, more than money or fame, are what keep people happy throughout their lives, the study revealed. Those ties protect people from life’s discontents, help to delay mental and physical decline, and are better predictors of long and happy lives than social class, IQ or even genes.
The Odds Favor Love
Dating and finding (and/or nurturing) love can certainly feel challenging. It’s not easy for anyone. Perhaps that’s why there seem to be like a million dating apps and online platforms for all types of singles. Maybe, in some circumstances, one’s mental, physical or emotional disability can make the hunt for love trickier. But maybe not… maybe being ‘different’ is the new normal.
You see, 1-in-4 U.S. adults – or about 61 million Americans – have a disability that impacts major life activities, according to the CDC. With mental illness and invisible disabilities on the rise, perhaps the statistics of people living with disabilities are even greater than cited. So if you just think about the numbers alone… well, the likelihood that one or both partners in a relationship have one or more disabilities is fairly probable. Maybe it’s just a numbers game. If 1-in-4 people have a disability, it only makes sense that interabled dating and interabled relationships are normal and increasingly common. And I love that, don’t you?
People with disabilities constitute the nation’s largest minority group. The disability community is the only group any of us can become a member of at any time. While much work needs to be done to advance the awareness and acceptance of disabilities, the concept of diversity and inclusion definitely is evolving and expanding. Diversity is celebrated more than ever when it comes to aspects of age, race, gender, sexual identity, ethnicity, religion, socio-economic background and, yes, disability.
The conversation surrounding the breakdown of stereotypes in regards to interabled relationships is getting louder. In an effort to help illustrate that interabled relationships are the new normal, some couples are sharing their personal love stories with the world. For example, Hannah Aylward and Shane Burcaw, who has a genetic disorder called spinal muscular atrophy, have a popular YouTube channel titled “Squirmy and Grubs,” where they document their life as a married couple. The pair field questions about their relationship to combat the misconceptions surrounding interabled relationships and more. Similarly, author and blogger Rachelle Chapman, whose spinal cord injury caused paralysis, hosts widely-watched Facebook Live Chats about her marriage to her able-bodied husband, in addition to other topics like parenting and general disability-focused hacks. And these are just two of many wonderful examples of interabled couples proudly and loudly declaring their true love.
All Relationships are Different
As with able-bodied relationships, each interabled relationship or disabled relationship is different. Every couple experiences ups, downs and unique twists and turns. Sadly, many assumptions whirl around interabled and disabled relationships that don’t necessarily affect able-bodied couples.
Here are some things to keep in mind:
One’s disability doesn’t define a person. We’re all complex and evolving beings with many parts. I’ve come to understand that my disability presents some challenges not only for myself but also for my husband. I’ve learned – perhaps the hard way – that I really need to be honest in my communication with him… how I am feeling, what I need in regards to support, levels of understanding and acceptance, etc. I have become more comfortable vocalizing my feelings and communicating my needs. And, in turn, I’ve reassured my partner that I trust he can and will openly share freely with me… when he’s overwhelmed, confused, happy and so on. I appreciate his willingness to understand and adapt. I am not the best at asking for help, but I want to improve upon this.
A disability doesn’t make one less worthy of having a romantic relationship or healthy sex life. All humans are meant to love and be loved. Listen, just because a person may have a diagnosis or disability and his/her partner does not certainly does not equate to the partner being a perfect person or perfect partner. No one is perfect! And disability or not, we each have to work really hard at supporting and loving one another.
Physical attributes are not the sole factor of attraction. Again, each and every person has so many layers and so much to offer.
The judgments of other people can hurt. Unfortunately, many people assume that dating someone with a disability is a burden, or that an able-bodied person solely plays a caregiver role to their disabled partner. This is not the case. The distribution of labor within a relationship is unique and ever-changing. Naturally, all couples support each other in many ways – physically, emotionally and spiritually.
Interabled and disabled couples often experience stigmas. You can combat myths if you choose to, but you don’t have to! Aspects of relationships are private and you don’t have to share or explain anything if it’s inappropriate or beyond your comfort level.
A romantic relationship may be between the two of you but, since we all crave connections, the support of others may benefit the relationship. Consider seeking out insight from other couples of all abilities – able-bodied, interabled and disabled. Don’t we all have so much to learn and gain from each other? I admit that my close friend with similar disabilities has served as a sort of therapist for me on many occasions. I appreciate her view, experience and ability to share with an open, well-intentioned mind. She offers tips on how she previously navigated situations within her relationship that may be helpful for mine.
Couples shouldn’t feel guilty seeking out self-care. Love is complicated. Relationships are hard. And people sometimes need to nourish and nurture themselves with self-care — either independently or, when applicable, as a couple. Self-care comes in many forms. What makes you feel like your best self? Exercising in nature is an essential need for my mental wellbeing. This is something that I communicate to my husband and he honors. Sometimes it’s that simple.
Give yourself some grace. We all mess up. Sometimes we need to apologize to our partner when we’ve goofed a bit. Sometimes a relationship doesn’t work out either. But love is out there… and accessible to all.
Relationships can transform one’s mind, body and soul. In fact, oxytocin, also known as the love or touch hormone, literally affects our brains. Remember, all relationships are different – whether you’re an able-bodied, interabled or disabled couple. So may you be loved and give love… in a way that feels and is normal to you and your partner. Lastly, while relationships are hard, maybe they aren’t that hard when you’re with the right person (who may or may not have a disability).
A new and first of its kind curriculum designed for integration into existing primary care nurse practitioner residency programs to improve the health care experience for individuals with intellectual and developmental disabilities (IDD) has been developed by nursing faculty at the Golisano Institute for Developmental Disability Nursing at St. John Fisher College’s Wegmans School of Nursing.
The online, modularized curriculum features an in-depth overview of health care topics and best practices in the field of IDD care specifically designed for nurse practitioners engaged in primary care residency programs. The curriculum focuses on practice areas where health outcomes are dramatically different for patients with developmental disabilities such as reproductive health, or where enhanced skills can reduce complications and stress, as in behavioral health.
The content, which is divided into five online modules, aims to expand the resident’s understanding of attitudinal, communication, policy, programmatic, social, and physical barriers that individuals with IDD encounter in primary care settings. The new curriculum is being piloted in the Primary Care Nurse Practitioner Residency program at Highland Family Medicine, based in Rochester, New York, and will then be distributed to similar residency programs nationwide.
photo credit: St. John Fisher College
According to Dr. Holly Brown, associate director of the Golisano Institute, the goals of the curriculum are not only better health, better care, and lower costs but also improved knowledge, confidence, and skills for the nurse practitioner. She said that this combination improves the provider’s sense of well-being, which is a critical part of maintaining a thriving advanced practice nursing workforce.
“There have been too many situations where a patient with sensory challenges comes into a noisy, chaotic setting and may not react well to being overwhelmed. A nurse practitioner with these essential skills can improve the experience of the health care visit; for instance, by collecting health information and accommodation needs in advance. Nurse practitioners can also be change agents by leveraging existing billing systems to sustain and improve the quality of care for these patients,” she explained.
With this new curriculum, the Institute provides an accessible tool for nurse practitioners to address the disparities in health outcomes experienced by individuals with IDD, a group that includes more than 6.5 million people in the United States, according to a 2019 study conducted by the Centers for Disease Control and Prevention. Research has shown that these individuals face a decreased life expectancy due to myriad factors, including a lack of trained health care professionals and reduced access to routine screenings and exams. In addition, patients with IDD often have multiple and complex conditions, such that their care requires additional time that current care provider systems do not often accommodate.
photo credit: St. John Fisher College
“Primary care nurse practitioners are on the front line of providing care for this population and yet we receive the least amount of training of any health care profession in working with people with IDD,” said Brown, who is a psychiatric mental health nurse practitioner in addition to her role at the Institute. “Many skills developed in this program are transferable to our other patients with communication challenges; for instance, older adults with dementia, people who have experienced a stroke, or individuals living with traumatic brain injuries.”
The program was made possible with support from the Golisano Foundation and through an Inclusive Health Innovation grant from Special Olympics International.
“Nurses comprise the largest health profession in the world and spend the most time with patients with IDD, so we were thrilled to fund this grant to help prepare them to provide the best care possible,” said Dr. Alicia Bazzano, chief health officer at Special Olympics.
For more information about the Golisano Institute for Developmental Disability Nursing, visit the website go.sjfc.edu/golisanoinstitute.
Broken heart syndrome, a life-threatening condition whose symptoms mimic a heart attack, is on the upswing, according to new research that shows the sharpest increases among women 50 and older.
Recently published in the Journal of the American Heart Association, the study examined 135,463 cases of broken heart syndrome in U.S. hospitals from 2006 to 2017. It found a steady annual increase among both women and men, with women making up 88.3% of the cases.
The overall increase wasn’t unexpected as the condition has become increasingly recognized among medical professionals, said Dr. Susan Cheng, the study’s senior author. But researchers were taken aback to find the rate of the condition was at least six to 12 times higher in women ages 50 to 74 than it was in men or in younger women.
“These skyrocketing rates are both intriguing and concerning,” said Cheng, director of the Institute for Research on Healthy Aging in the department of cardiology at the Smidt Heart Institute at Cedars-Sinai in Los Angeles.
photo credit: American Heart Association
The condition, also known as Takotsubo cardiomyopathy, has been studied for decades in Japan and elsewhere. But it wasn’t well known internationally until 2005, when the New England Journal of Medicine published research on it.
Triggered by physical or emotional stress, broken heart syndrome causes the heart’s main pumping chamber to temporarily enlarge and pump poorly. Patients experience chest pain and shortness of breath, symptoms similar to those of a heart attack.
If they survive the initial phase of the disease, people often can recover in days or weeks. However, the longer-term effects are still being studied. Despite apparent recovery of heart muscle function, some studies show people who have had broken heart syndrome are at heightened risk for future cardiovascular events.
Cheng said more research is needed to understand the risks and reasons why broken heart syndrome seems to disproportionately affect middle-aged to older women.
The end of menopause may play a role, she said, but so might an uptick in overall stress.
“As we advance in age and take on more life and work responsibilities, we experience higher stress levels,” she said. “And with increasing digitization around every aspect of our lives, environmental stressors have also intensified.”
The study arrives at a time when public health organizations have been delving deeper into the mind-heart-body connection. In January, the American Heart Association published a scientific statement on the connection, saying there were “clear associations” between psychological health and cardiovascular disease risk.
While the study was done before the rise of COVID-19, Cheng said the stress of the pandemic has likely led to a rise in the number of recent cases of broken heart syndrome, many of them undiagnosed.
Photo credit: Getty
“We know there have been profound effects on the heart-brain connection during the pandemic. We are at the tip of the iceberg in terms of measuring what those are,” she said.
Dr. Erin Michos, who helped write the AHA’s scientific statement but was not involved in the new research, said the findings underscore how important it is for doctors to screen patients for mental health conditions.
She also called for more research to understand a disease about which little is known.
“We should all be worried about why its incidence is on the rise,” said Michos, an associate professor of medicine and director of Women’s Cardiovascular Health at Johns Hopkins School of Medicine in Baltimore.
The study, she said, serves as a potent reminder that everyone needs be proactive about their mental health, especially those with cardiovascular risks.
“We can’t avoid all stress in life, but it is important for patients to develop healthy coping mechanisms. Some strategies include mindfulness meditation, yoga, exercise, eating healthy, getting adequate sleep and cultivating social relationships for support systems,” Michos said. “For patients with significant psychological stress, a referral to a clinical psychologist or other clinician with expertise in mental health is recommended.”
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