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At a hospital in 2005, I was handed a premature baby. A sacred human life to care for. Believing I should only feel grateful that I now miraculously had a real live, robust, child who was so wanted, I was also terrified that I lacked the experience and wherewithal to keep this precious being alive, especially after having lost our last baby. Over the next 17 years, I would forge a path forward, many times reverting back to the same life I had before a child. Through trial and error, I would exhaust myself in the process and learn many lessons about being a caregiver. I would try to disavow any negative “shadow” emotions about having this level of responsibility and repeatedly override fatigue.
Until the time of her death in 2022, my family did our best to honor and celebrate the person my mom was while attending to her increasing level of medical need. It was an emotional roller coaster as great love mingled with a high level of responsibility and stress on everyone’s part. My father was her faithful partner and experienced firsthand the changes in her health and ability to function. My sister juggled a family and career with the needs of our mom. My brother showed up at my parents’ house any evening his busy work travel schedule would allow. Numerous meals were cooked by my sister-in-law. I remained present over the phone, laptop, and visits as my work allowed. My brother-in-law, a highly esteemed Cleveland Clinic doctor, selflessly stepped in as my mom’s advocate, consultant, and care manager, for which my family will forever be grateful. My mom was a dedicated wife and mother for decades, and now it was time for us to care for her.
Oftentimes the challenging reality of caregiving situations in families is minimized or not acknowledged at all in our culture. My mom influenced me to speak authentically about potentially difficult issues, and I write this post in her honor.
Types of Caregiving Situations
Many different types of circumstances can create a situation in which another human being needs to have some level of care and support in order to function and function well, having their basic needs met. It could be that the person requiring care is a child, a sibling or peer, a partner, a parent, or other adult family member or friend.
There is caregiving that would be normal and expected, as is the case when we decide to have or adopt a baby or child. It is generally assumed that the child will become increasingly independent and self-sufficient over time.
Conversely, there are many caregiving situations in which the person needs care due to health issues or disabilities. In the latter situation, there may be health issues we were aware of from the outset of the relationship and others in which the health issues or disabilities evolved over time or came about suddenly without warning, such as a serious injury or a stroke. These conditions may remain consistent or progress over time. Thus, caregiving needs could be short- or long-term.
Melody and her husband John have enjoyed living out in the country for 40 years. Recently, John has developed problems with his vision, necessitating several procedures to address this problem. To date, the doctors have expressed a guarded and uncertain prognosis for John. In the meantime, Melody has put her life on hold as she navigates this situation, both in terms of assisting her husband with activities of daily living and attending the sometimes-unpredictable medical appointments in town with him. Melody is thankful that John is a “rational” patient, in contrast to her past experience caring for her elderly parents. Community support is especially important for the couple, who has no other living family members.
In contrast, 44-year-old Belinda has never known life with her legally blind husband of 8 years, Colin, to be any different from the way it is now. His blindness is a fact of life for the couple. Belinda struggles with Colin bumping into walls and belongings in their home. She runs the household in terms of anything requiring vision to perform, all while trying to attend to her own disabilities. Despite the resources available to help Colin achieve greater independence and safety through the use of a cane, he declines to take advantage of this. Belinda has found that, while there are numerous resources available for the person with blindness, there is a lack of support for the family member of that person.
Furthermore, caregiving situations vary in terms of depth, the intensity of need for a given life skill or activity of daily living (ADL) and breadth, the range of skills and activities of daily living for which the individual needs care.
Carolyn and her husband live with their youngest daughter, 39-year-old Ella, who is one of three siblings and has Down syndrome. Carolyn has tried not to set limitations on what Ella might learn and accomplish through the years due to her disability, while recognizing the pace was likely to be slower and goals modified. Carolyn has never known her daughter to be any different than she is now in terms of her disability. Carolyn has lovingly and masterfully provided and arranged enriching activities for Ella throughout her life. She knows her daughter well and helps the professionals involved to understand and best support Ella’s physical, mental, and emotional needs. She wisely and skillfully capitalizes on the resources available to her and avoids trying to “do it all”. Ella has a volunteer job, music lessons, fitness sessions, and time with a college student buddy. Carolyn creates a color-coded calendar to keep track of all her daughter’s activities. She keeps extensive notes on Ella’s behalf as a strategy to structure Ella’s schedule and make sure her needs are being met. She takes respite as needed while Ella is engaged in another activity or with another person.
Why are These Situations so Difficult?
Let’s be honest. Having to assume responsibility for another person’s care, even if a source of great joy at times, can be quite taxing. Most caregiving scenarios unfold over time, taking extra time, energy, money, and wherewithal over months to years of arranging and/or providing the person’s care. Much of the time, there is no true time off, let alone paid, giving the caregiver a sense of always having to be “on”.
Take Elena’s situation, for example. Elena’s elderly mother Paulina lives with Elena’s sister Tatiana. Elena and Tatiana have worked as a team to provide for their mother’s care since their father’s death 10 years ago. Their mother has multiple complex chronic physical and mental health conditions. This international family’s culture dictates that elders age in place as much as possible with the help of extended family. The sisters are doing everything they can to have Paulina age at home.
Tatiana is “onsite” and provides meals & medication management, time with family, and transportation to and from the various medical appointments, also managing crises when they occur. From her own home 2 hours away, Elena manages her mother’s expenses, schedules various caregivers and other health professionals in the home whenever possible, and comes to town frequently to help with logistics on the ground. She speaks with her mom nearly every day on the phone. Elena summarizes her situation here:
“I think the main stress is that feeling of NEVER being off duty. It is similar to when one has kids but having taken care of both a child and an elderly parent, I would say the feeling is much more intense and less gratifying with a parent, or at least with my experience with my mom. Even when she is being cared for by another person, there is always a feeling of being on duty, because at any moment we will be called upon to manage her.
The second and related point I would make is that there is such an unpredictability to her needs, and this also makes it much more challenging to care for her. Kids' needs are more linear, but my mother's needs are not. She is very up and down both because of her mental health and her cognitive decline. Finally, there is gratification one gets from taking care of a child (the sweet hugs and kisses, etc.) that may not be there with an elderly person who has dementia. That is sad and hard to take at times. We know there is SO much we can't control. We try to take care of our mom in the way we feel is morally, ethically, and culturally correct. We are very fortunate to have the resources to do so. Asking for and seeking out help is SO important.”
Furthermore, in the U.S., the stress of being someone’s caregiver is somehow not a socially acceptable topic of conversation. We do not see many examples of caregiving situations reflected back to us, resulting in a sense of isolation among those for whom this is a large and undeniable fact of life. This Washington Post article provided by Tatiana and Elena gives a perspective on the issue of caregiving common in many other cultures: Family caregiving should be seen as an expectation — not an exception Truth be told, each family likely has its own caregiving story, regardless of how the family has decided to handle it.
"Self-care is not selfish. We cannot serve from an empty vessel.” - Eleanor Brown
Burnout
According to the World Health Organization, “Burnout is a syndrome resulting from chronic work stress that has not been successfully managed. It is characterized by three dimensions:
feelings of energy depletion or exhaustion;
increased mental distance from one’s job, or feelings of negativism or cynicism related to one's job; and
reduced professional efficacy.”
Seeing to the basic needs of another human being who is depending on you is an occupation in and of itself. There is no shame in recognizing when you feel overwhelmed and/or under-resourced in this role. Nor are you a bad person for feeling normal human emotions of anger, frustration, sadness, grief, disappointment, fear, or other emotions. Maybe this isn’t what you signed up for with this relationship.
Feeling anger towards the person does not negate your love or care for them, nor does it mean you think it is that person’s fault or their intention to burden you. It might mean, however, that you need extra support, whether that support be physical, emotional, social, or financial, etc. You need to advocate for yourself as well as your person.
Everyone has heard the advice about putting your own oxygen mask on first before your child’s on an airplane. Bottom line, if you are not cared for, you will be unable to facilitate optimal care for your person. You can become so wrapped up in the demands and details of your person’s care that your own needs are neglected. Self-care for carers is essential and can be broadly defined. This may be a massage or a bath, but it typically goes much further than that. Perhaps you need respite, some good therapy, emotional support, or physical support. It could be that you have a health issue that needs attention!
Marlee has taken time out from her profession in the health sciences to raise her 3 young children. She speaks of her experience as a stay-at-home mom here:
“I think raising young kiddos is mentally exhausting. Having the patience to explain things to them and dealing with their large emotions all while staying calm and kind is wearing. Not any one thing works every time. I recommend reading parenting books and taking time for yourself. Consistency is also important. I have found several strategies in the books I have read. The tactics I cycle through are actually written out and are posted in my closet as a frequent reminder!”
Marlee and her best friend Erin engage in partner personal training sessions as a way of blending quality social time, a break from the kids, and physical activity. At times, they may bring their children to a session at a local playground so that they can play together while the two moms exercise. Erin, who juggles running her own business with being the parent of 2 young children, agrees with Marlee:
“It is mentally exhausting! I think we lose ourselves; we are SO focused on the kids that we don’t turn the focus upon ourselves. As parents, we should be taking our self-care time – always - that is what makes us the best version of ourselves. And this makes us better parents, spouses, and productive members of our community. We should teach our children this by role-modeling it for them. It should be a healthy way of a life.”
The following is a long list of additional tips and advice for caregivers supplied generously by people in my life:
- Educate yourself about the illness and/or mental or physical condition online and through community resources such as local, state and/ or national groups associated with it to know what questions to ask.
- Build an information network by joining a local educational and/or support group on the disability or condition to meet other families and caregivers. You usually will get the best information from those in similar circumstances. For example, the Virginia Navigator website provides a wealth of such resources for disability, aging, and veterans' services in Virginia.
- Build a medical team for regular care and for special issues as needed.
- Decide how and when to make time for yourself.
- Get out to do something you enjoy on a regular basis. It is worth it in the budget to build in a few hours a week for a sitter.
- For babies to young adults, you could try to recruit college students for help, depending on your needs.
- For adults, consider working with an agency or using adult day care.
- Hire someone to take the adult out into the community to a gym or other activity to give you time alone at home.
- If money is a factor, consider finding a buddy (not necessarily a friend) whom you could safely trade off with to watch the one in need of any age.
- Seek out places in the community such as The Center at Belvedere in Charlottesville which offers a lot of free programs for all on aging, legal/medical planning, stress, and insurance, including long-term care.
- Join a support group specifically for caregivers through a community resource like Jefferson Area Board for Aging or online.
- You cannot do therapy 24/7 or keep your person engaged all the time. It is perfectly fine to use the TV set or movies for entertainment.
- If caring for an elderly person, learn about options and costs for direct care before it becomes too much for you. Be honest with yourself about what you can and can’t do for a parent, putting yourself and your children/spouse first.
- Involve other adult family members if possible; it could be a great opportunity for both extended family members and your loved one to forge a loving and meaningful bond.
The following pointed parenting advice Marlee has posted in her closet may also be applied to other caregiving situations:
Take deep Breaths. Smile.
Treat others as you would like to be Treated.
Be Silly.
Be Patient - Slow Down.
Be Kind - Be Compassionate.
Give Two Choices.
Use Redirection/ Distraction.
Establish Connection before Correction.
Mind Perspective - Yours and Theirs.
Explain the "Why".
Get on Their Level.
Use Descriptive Praise.
Prep the Environment.
Think Through potentially difficult situations.
Answer with a Positive First.
Be the CALM to their Storm.
I would also include determining how and when you will incorporate needed rest for yourself, which may be when your child is resting.
It Takes a Village
Be realistic about your expectations of your charge(s), the situation itself, and the amount of time, money, energy, and wherewithal you truly have available to devote. Having sufficient self-care, resources, and self-compassion will directly transfer to what you can provide to your person(s). Self-care may look different for everyone, so determine what constitutes self-care for you. Taking breaks from your caregiving role however possible will be a gift to your entire inner circle and should not induce guilt. Seek out help and support because no one person can meet all the needs of another person. We were meant to live in community and care for one another. Creating your own “village” will ultimately be best for all!
The End of the Story (for now)
By the way, my 17 1/2-year-old son Michael is not only very much alive but thriving. He is physically healthy and definitely more balanced than I am. He is uniquely his own person without apology, an exceptionally good human, and a gift in our lives. I learn from him every day.
And my mother’s beautiful celebration of life weekend brought together many people from my family’s past and present in love. Tears were shed, hugs were exchanged, and healing was experienced all around. Connecting with people and sharing stories honored who she was before her needs for caregiving became so intense. This is how I choose to remember her.
I owe a special thanks to those who thoughtfully contributed to this post.