Caregiving can be so demanding that we lose track of our feelings. When my husband was dismissed to my care after eight months of hospitalization, I felt a dizzying array of feelings. Of course I was elated to have him home, but I was scared too, and wondered if I had the skills to care properly for him.
Totally opposite feelings, such as despair and hope, sorrow and joy, can be exhausting. I’ve found it helpful to name a feeling as soon as I feel it. You may wish o do this too. Why should you bother to track your caregiving feelings?
You’re a caregiver because you care. If you didn’t care you would do something else. Feelings influence your approach to the day, your daily tasks, and the care you provide. Some feelings are pleasant, while others are unpleasant and worrisome. Feelings can divert you and push you off-course, and rob you of sleep. When you awaken in the morning you feel like you haven’t slept at all.
Good feelings lift you up. There are feelings that make you smile, laugh, and remember happy times. Although you can’t control what happens in life, you can control your responses to events. In fact, you can decide how you want to feel. With determination and practice, you can replace negative feelings with positive ones. Admittedly, this takes practice, but the skill is worth your time and effort.
Upsetting feelings pull you down. Caregiving is a rewarding, yet difficult role, and it’s a role that keeps expanding. Frustration, resentment, and other negative feelings make caregiving more difficult. You may find yourself obsessing on one feeling, and think about it all day. Why won’t this feeling leave you alone? You can help yourself by being aware of your feelings, identifying the sources, and naming them.
Your feelings affect your loved one. You may think you’re hiding your feelings, but your loved one can pick up on them. Your feelings may become her or his feelings, an outcome you didn’t anticipate or want. A development like this can make you feel helpless. Indeed, you may wish you had more time to process your feelings. One of your challenges as a family caregiver is to cope with feelings without affecting your loved one.
Processing feelings takes time. It’s common for family caregivers to feel isolated and alone. When you agreed to be a caregiver, you may have expected help from family members. Help may not arrive—something that can provoke anger. Dealing with anger takes time, honesty, and emotional spadework. Coping with anger now is better than stuffing it.
Feelings take physical and emotional energy. When you least expect it, feelings can drain your energy. In fact, some feelings may perseverate, or stick in your mind. Tracking your feelings, and learning to understand them, helps you conserve physical and emotional energy. You may also learn how to pace yourself. Keeping a Feelings Journal may be helpful. Instead of writing anything and everything, you may wish to use a template, and keep the pages in a three-ring binder. I created this template for you.
Today’s Main Goal _____________________________________________________________
Notes to Myself __________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
Under Today’s Main Goal you may write “Take Jim to the doctor.” Under Today’s Feelings you may write stressed, cheerful, and grateful. Under Notes to Myself you may write “Make follow-up doctor’s appointment.” Tracking feelings in a journal can help you and your loved one. Best of all, you discover someone special—yourself.
When I first became my mom’s caregiver, I thought that being a happy caregiver was is a bit of an oxymoron. To those who are thrown into caregiving, it often feels like a thankless job. And whether you’re caring for a loved one alone or with a team of family, it’s emotionally, financially and sometimes physically exhausting. You’re constantly pulled between wanting your own, normal life back and the guilt you feel from wanting your own, normal life back. Unless you’re some magical superhuman being, it’s difficult to find happiness when you’re burnt out and grieving. You’re human. It’s natural.
It’s taken years for me to realize that happiness as a caregiver won’t just fall into my lap. Becoming a happy caregiver is a process. It isn’t a given. It ebbs and flows. Sometimes it’s hard work to be happy. Since time travel hasn’t been invented yet, I can’t change my caregiving mistakes. What I CAN do is share what I’ve learned in the last few years to become a happier millennial caregiver.
#1. Self Care
It’s so, so true that you can’t pour from an empty cup. I would know. I went through the stress of becoming a new mom to twins and becoming my mother’s caregiver simultaneously. In the beginning, I tried to be super mom, super wife, super daughter. And guess what? I was miserable. I was experiencing caregiver burnout and it was very real. If you are unhappy with yourself, it doesn’t matter how many people tell you what an inspiration you are.
According to a 2015 report from the AARP and the National Alliance for Caregiving, there are an estimated 9.5 million millennial caregivers. That means that a little more than 11% of America’s millennials are caregivers — most of them caring for a parent or grandparent. And while that’s a lot of us, it also means that the large majority of millennials are lucky enough to not be in our shoes. Cut yourself some slack. This job is no joke.
Take care of yourself.
Go for a walk or hike outside. It’s amazing what some good ol’ vitamin D can do. Get a foot massage, indulgent in a pricey coffee, treat yourself to window shopping. Do something everyday that makes YOU happy. Put away your phone and just have a moment. You deserve it.
Along with taking time out for yourself, you need to physically take care of your body. Easier said than done, right? I’m no stranger to stress eating and sometimes you just need to indulge. But it’s amazing how much better I feel when I eat healthy and exercise. With every vitamin you pop, it’s also a small reminder that YOU are important and YOUR needs matter.
#2. Let Go of Guilt
As millennial caregivers, most of us are just hitting some of the major milestones of adulthood. We’re climbing our way up the career ladder, moving into our first homes, perhaps we’re getting married and having babies. When you suddenly find yourself caring for a declining parent or grandparent, it can be a jolt. It’s only natural to wish for the way things were. Don’t feel guilty for sometimes missing the way your life used to be.
On the other side, guilt also comes from not being able to be with your loved one enough. This person nurtured you and loves you and you feel guilty for not being able to mirror that same dedication and selflessness.
Even though it’s 100% the right move for my mom and our family, I still find myself hanging onto guilt from putting my mom in a memory care facility. I feel guilty when I drop her off. I feel guilt when she calls me in tears that she wants to move back to her old house. I have to remind myself that my mom was adamant when she was first diagnosed that she wanted me to live my life to the fullest and not be a caregiver. It’s important to remember that this isn’t what my mom hoped for either.
The point is, as millennial caregivers, you’re doing the best you can. We were dealt a tough hand. Life happens. Your life is happening now. Give yourself a break. Let go of the guilt.
#3. Realize that Friendships Evolve
When I first became my mom’s caregiver, I had a difficult time relating to my peers. I was in crisis mode and while my friends were worrying about weekend plans, I was worrying about getting my mom medicated and stable. At first, I secluded myself. I didn’t know how to act when I wasn’t my snarky, 20 something self. But that got lonely fast.
Friendships evolve. The friends who can’t hang, won’t. Your real friends will be there for you through the good and bad. Friendship isn’t about being happy all the time. See your friends. Lean on them. It’s okay to not feel “yourself”. Give them the credit they deserve.
#4. Get Support
Even if you feel alone in your caregiving, you aren’t. Support can come from family, friends, online or in-person support groups or even a babysitter so you can get some alone time. You may need time to vent. Don’t let it build up just because you don’t want to be known as a “Debbie Downer.” It’s sometimes hard to integrate your struggles into everyday conversations. I totally get it. I go to a therapist regularly so I can talk through it all.
Just because you are physically capable of juggling it all, doesn’t mean you should. It’s not healthy. Try to delegate tasks to other family members and ask advice. People want to help you. It’s your responsibility to tell them HOW.
#5. Accept Your Parents for Who They Are NOW
Sometimes I get so caught up mourning the loss of who my mother once was that I miss out on who my mom is now. Of course it’s natural to grieve, but you also need to accept this new person. This is especially difficult for degenerative diseases as, by nature, your loved one’s needs are constantly changing. You’re constantly needing to reevaluate who they are.
Although my mom has difficulty dressing herself, she also loves my kids fiercely. She may not know why she lives in a memory care facility, but she remembers tiny details of my childhood. Although we aren’t in an ideal situation, I’m a luckier person to have her in my life.
Mental health issues can strike at anytime, without warning and with little regard for your responsibilities. I knew my husband suffered from panic disorder when I married him. However, it wasn’t until a particularly stressful period at work that it became apparent that I was yet to see the worst of his condition.
By this point, we had a son, and it was clear he couldn’t understand what was happening to his daddy. Fortunately, children are smarter than we give them credit and can quickly adapt to take charge of situations, as long as they feel comfortable.
I was hesitant about explaining mental health to my son, but, since we had the conversation, he’s my biggest helper and an incredible support to his father.
If you’re struggling to broach this difficult topic, here are a few pointers:
Don’t Baby Them
Children see a lot more than we realize. Attempting to keep your kids in the dark if they have a mentally ill family member is a terrible tactic. Not only will they still see the difficulties, but they also won’t understand them, and this will quickly turn to fear.
Being as honest as you can with your child prevents them from feeling isolated. Particularly if the sufferer is a primary care figure; it’s actually easier to cause long-term trauma by shutting them out of the situation than by exposing them to it. It’s easy to feel like they’re too young to experience these sorts of things. However, knowledge is power – even when you’re little – and understanding strange behavior will allow them to still feel safe and in control.
However, there is a slight caveat to point one. Mental illness is complex, and most children’s brains aren’t developed enough to understand the intricacies of brain function. These means it’s important to find a relatable metaphor and description.
A personal favorite in our family is the ‘Hulk’ metaphor. As panic can quickly turn into rage and mental illness sufferers can lose their cool quickly, having a way to explain this to our son without him feeling at fault quickly became essential. The Incredible Hulk is a superhero who turns into a raging monster when he’s angry. This comparison is not only relatable and understandable, but it also comes from the child’s world. Using metaphors based on cartoons and comics can be an incredibly useful tool to help them see what having a mental illness means.
If you’re in this situation, it’s common to worry about information from other sources. While you can control how you address things with you child, there are many out here offering less-than-helpful information. However, here is another area where you child might surprise you.
Especially if they’re older, allowing their own research will let them feel like they can take control and will significantly increase confidence. Just to be sure to engage in discussions about their findings and encourage open dialogue. If you’re worried about internet safety, you can also install parental controls or a proxy service to protect them from online criminals.
Ask Their Feelings
The most powerful dialogue about mental health goes two ways. It doesn’t matter how well you word your explanation, if you aren’t receptive to your child’s thoughts and feelings, they can quickly end up feeling confused or isolated.
There are a few important check-in points for children:
When you first offer an explanation, ask how they feel about what you’ve said.
After particularly bad and potentially frightening attacks, talk about their emotions and quell their feels
If possible, get the sufferer to speak with them so that they can understand you can still be a ‘normal’ person and have mental illness.
The media can offer negative views of mental health patients. If you child is exposed to this, sit him or her down and discuss how they relate it to the situation at home.
While these points are a great place to start, in reality, it will always help to talk to your child about their feelings towards mental health. Having this open conversation means you can keep tabs on their responses. Plus, they will feel more comfortable to raise their worries and fears in the future.
Give Them Responsibility
Anyone who cares for a mental illness sufferer will know how quickly you can feel powerless. If you sincerely love someone, it’s difficult to see him or her in emotional distress. This lack of control can be one of the hardest elements to being a caregiver.
Although often overlooked, this fact is still true for the children and young relations of the mentally ill. They want to do what they can to help with the situation, so allowing them a small level of responsibility is key. Show them the medication schedule, and ask them to help remind you, or identify a small job they can do if there’s a particularly severe episode. This could be as simple as getting some pillows or a blanket or making a cup of water. Not only will it help their confidence with the situation, but it will also stop them from panicking if things get tricky.
Many put off addressing mental health issues with their children because they feel it will be too difficult. However, this is often not the case. Young people are incredibly resilient and will continually surprise you in their empathy to mental health patients. If you’ve been delaying this talk, follow these tips and ensure your child has a clear picture of their role in the situation.
Caroline Black is a writer and blogger who has become a primary caregiver for her sister. She writes about health, as well as sharing her experiences and insight with mental health and how it affects those around them.
It has taken me almost 10 years to figure out that I actually have a reset button and that I’m allowed to hit it when needed! My husband has a C4/C5 spinal cord injury and as his primary caregiver for going on 10 years, along with caring physically (alone) for our almost 10 year old, I’ve hit my limit often.
However, every time I did, I pulled myself back from the brink only a little thinking it was all I needed and all I could allow myself at that time. I mean, how do you, as a caregiver, allow yourself respite time when your husband cannot take care of himself AT ALL and when your young child needs you desperately? So really, I didn’t allow myself time and mentally wasn’t in a place where I could allow it to happen. Everyone told me to take time and everyone told me I needed it and deserved it but until I believed it, it wouldn’t happen.
So hitting the reset button didn’t actually happen until I understood and accepted that I needed to do it and needed to allow myself to do it. Sure, my husband told me to take the time but again, until I (me, myself and I) allowed it to happen, it wasn’t going to happen. So now, when I know when I get close to the breaking point (I get short and angry and mean with my family), I need to totally step away from the situation.
Sometimes, the reset is a nap. Sometimes it’s a car ride around the block. Sometimes it’s a walk down the driveway. Sometimes it’s a night away if all works out as planned! But most times, it’s 15 minutes alone in my room doing deep breathing and stretching. I’d say yoga but it’s really just stretching… I sit cross legged on my dog’s bed and lean as far forward as possible and stretch my back out and breathe… I used the Headspace App to meditate for a few weeks and now, when I need the time, I can sit in my room, stretch and breathe and do a 5 minute faux-meditation.
That’s usually how I reset since while I’d love respite care, I know that I will never, ever be okay with doing that knowing my husband and my daughter need me. So if the time I have to take for myself is only a few minutes, that’s okay since I know I can calm myself down and relax and then get back in the game.
Whatever you want to call it, caregivers need it. It’s that thing about your personality where shit is exploding all around you and you just roll with it. Roll up your sleeves and get to it, every day, no matter what.
Inner strength is a decision.
There’s no trick to it. There’s no pill to take. You just decide that you’re going to do this, come hell or high water. And then you do it, no matter how hard it is.
We all take it one day at a time, one moment at a time. Fear, despair, anger — emotions are irrelevant when you’re busy. Acknowledge your emotions, see what’s behind them, and then move past them.
Know why you’re here.
Everything I do as a caregiver has a reason for it. I’m here because I choose to be. Are you doing this to show your love and devotion? Are you doing it because you’re living your values? Are you doing this because you love helping people? Know your reasons and remember them when things are tough.
It will always be hard.
Caregiving gets easier, but it’s never easy. The harder I push myself, the more I can do. I’m stronger than I can possibly imagine and I know that. We all have a source of strength — cultivate it.
I don’t care what other people are doing, I care about what matters to me. By surrounding myself with a community of people who put community first I save myself from the opportunity to feel jealous about other people’s lives. I’m committed to my life as a caregiver and I don’t want to waste time on a life I’m not living.
No matter how strong you are, we all have our breaking point. Respect it. You can’t go 110% all the time. It’s okay to give 50% if that’s what you need to do to keep moving forward. You can’t sprint forever.
Being on high alert all the time will kill you. Our bodies aren’t designed to be hyper vigilant at every moment, it wears us out. There are boring moments, even in the ER and the ICU. A lot of them. Cherish them. Allow yourself to be bored.
Our family at my brother’s high school graduation in 1998, 1 year and half before his life changed forever
This Saturday my older brother will graduate magna cum laude from Volunteer State Community College with his Associate’s degree in Computer Information Technology. While every degree is special, this one is particularly significant. Earning this degree was a hard-fought battle, requiring perseverance, inner strength, and tenacity.
18 years ago, my brother made a decision that put his entire life on hold. When our mother was diagnosed with degenerative disc disease, she underwent a spinal surgery intended to alleviate her pain. Instead, the surgery was performed incorrectly, leaving her permanently disabled and unable to work. Two weeks prior, my brother turned 19 years old, and he was entering his sophomore year at college. He had immersed himself in a full university experience: he was an honors student in mechanical engineering, he was active in rock climbing and racquetball, and he had many friends. All of that changed when our mother’s surgery went wrong. He dropped out of college to come home to provide care for our mother and me, his little sister 7 years younger. He became responsible for her physical care, cooking, cleaning, and he also got a job to pay all of our household bills. In addition, he began taking me to school. I also took part in providing care for our mother, yet my brother bore the remarkable brunt of our mother’s care needs without any outside support or assistance.
Caregiving caused an 18 year gap in time before my brother would march in cap & gown again
While my life as a caregiving youth certainly wasn’t easy, I will always recognize the role my brother played in shielding me from the more devastating effects of caregiving at an early age. Because of him, my life took a very different path. When I look at his experience as a young adult caregiver, I know what my life could have been. Yes, the stress of having a mother in chronic pain sometimes negatively impacted my time in school. But, I will never know what it’s like to have your educational dreams snatched away because of caregiving. Yes, I know what it’s like to be bullied and to not feel comfortable telling other people about your life as a caregiver. But, I will never know what it’s like to be completely socially isolated and experience the loss of every single friend you’ve ever known because your life suddenly became vastly different than your peers. Sure, I know what it’s like to push yourself through school with the goal of becoming financially successful, always mindful that one day your mother’s care will fall on your shoulders. But, I will never know what it’s like to be forced to unexpectedly work a full-time job to carry the weight of a mortgage and an entire family’s household bills at the bright young age of 19. Because of my brother, there are certain sacrifices that I have never experienced.
When I tell people our family story and they ask about our mother, I say that she no longer required intense physical care around 8 years ago, mainly because she stopped having surgeries and her care progressed to the management of her chronic pain.
“Oh!”, people often respond, somewhat dismissively, “So everything is fine.” Others even say, “Your brother isn’t a caregiver anymore.”
“Well,”, I say, always getting a bit flustered, never knowing how quite to explain our family’s situation. For people who have never experienced family caregiving, they don’t quite understand. They don’t know that in some ways, caregiving never really ends, even if direct physical care is needed irregularly. The severe financial impact never ends. The worry over our mother’s health never ends. The constant gaze towards the uptake of future caregiving responsibilities as our mother ages never ends. And for my brother, on the eve of his graduation from college, the impact of caregiving on his career never ends.
Caregiving is the reason why at age 36, despite being “on the right track” at age 19, he has finally earned his first postsecondary degree. Caregiving is the reason why at age 36, he is not yet finished in school; another 2 years of hard work is needed for him to earn a Bachelor’s degree. Caregiving is also the reason why even after those years of going back to school, he still isn’t sure how to answer the big question of “what do you want to be when you grow up?” because he lost those carefree years of exploration during young adulthood.
I always consider my experience in terms of what I didn’t have to give up because of caregiving, or conversely, what I still was able to experience despite caregiving. That’s all because of my brother. He is the reason why my life was not utterly broken as a caregiving youth, why I was able to pursue my dreams, and why I have hope for my future. He is the reason why my career has been devoted to helping other child and young adult caregivers finally gain much-needed recognition and support in the United States. I firmly believe that because of his conscious actions of selflessness and compassion, millions of other caregiving youths will one day also feel hopeful that having an ill or disabled family member no longer means that they must give up their educational and career goals. People often call my brother a “hero” for our family. Indeed he is. But, as someone who has intimately watched my brother care for us day in and day out for years, I know that he is more than our family’s hero. He has cultivated a legacy that will impact the lives of millions of other young caregivers, and his graduation, is only the beginning of his accomplishments.
Ferrell Lewis, today at his college graduation. He graduated magna cum laude in Computer Information Technology.
We all recognize that caregiving is a complex task. It can bring a new closeness with the person you are caring for. It can inevitably bring a flood of emotions including compassion, nostalgia, gratitude, devotion, frustration, grief, sadness, love, guilt, and anger.
Anger is an emotion that is particularly challenging for caregivers. It is normal that at some point in the caregiver relationship it will appear. Often times when your role is not acknowledged or the person you are caring for is agitated or aggressive the stress of this role feels overwhelming. You are also simultaneously coping with the grief of losing the person you knew which is an additional component. The reality is unexpected behaviors or medical problems can happen. In your role as a caregiver you cannot always stop or control these situations making you feel helpless and isolated.
The first thing to recognize is anger is a normal reaction. Caregiver fatigue evolves from daily physical and emotional exhaustion. You may become emotionally raw. Do not chastise yourself of feel guilty when you have moments of high frustration or anger. You are human and nobody can always balance all aspects of their life, family other relationships, work, other life commitments in a seamless way. There are things you can do and need to know as you find yourself experiencing these feelings:
Recognize that you are making a difference even when it doesn’t feel that way
Think about what care options would be available if you were not there and how significant your role is.
Be kind to Yourself
Forgive yourself for moments when you become frustrated and angry. Focus more on the countless times when you were patient and compassionate. Allow yourself to have moments of imperfection.
Allow Yourself Respite
Be aware of your own body and feelings. Don’t wait till you crash physically or emotionally from your caregiver responsibilities. Be proactive on your own behalf and get additional support from a relative, friend, of healthcare professional, or respite care program. Give yourself time to recharge. It will benefit you and the person you are taking care of.
Take a Moment to Consider Why You are Angry
When someone is yelling at you or being physically aggressive it is hard not to get angry. Carefully consider why the person you are caring for is doing things to make you angry. Maybe their behavior has nothing to do with you. Perhaps their medical condition creates poor impulse control or memory and they can’t help but ask you the same thing over and over again. Maybe they don’t recognize you and are afraid you are a stranger and they are reacting out of fear or confusion. Maybe they are having a reaction to a medication. Sometimes understanding the reasons for their behavior can soften your reaction. Your feelings about caregiving will change moment to moment.
Incorporate Some Fun Into Your Role as a Caregiver
Think about something you would like to do that could bring some relief from conflicts. For example turn on some music and dance. Music can have a soothing affect on all concerned. Pick a favorite movie and watch it together. Take out old photos and reminisce. That can be meaningful for both of you.
If trying to get dressed becomes a battle just stop. Focus on something else and come back to it later. Give the person you are caring for limited choices when appropriate. For example, would you like to wear your blue or red shirt. Have them both out so the person you are caring for can choose. This way you both feel like you have some control which helps reduce frustration and anger.
Identify Healthy Ways to Release Your Anger
Maybe you will feel better after you kick a ball or punch a pillow. Maybe going in another room and saying what you would like to say letting it out will help. This release will help calm you down so you can move forward with it taking less of a toll. Physical exercise releases tension and can lift mood. Can you take a walk, do jumping jacks, yoga, or meditation? Think about what feels right for you. Writing can be a great release. Write your feelings down or what you would like to say. Transfer your feelings into a poem. You don’t have to share it with anyone. It is another form of healthy release.
Don’t spend time Getting Upset about Things You Cannot Control
This takes extra time and energy you don’t have. Remember you cannot necessarily control the actionsof the person you are caring for. You may have a big fight yesterday. The person you care for has no memory of it today. Try to leave your anger behind. Focus on what you can control which is your reaction and attitude. Start fresh today.
Recognize You Cannot Change Past Relationships
You may be caring for a person whom you had a past conflict ridden relationship. This impacts your role as a caregiver. You need to closely examine its impact on you. Maybe you are not the best person to assume this role.
The biggest mistake caregivers make is not taking time taking care of themselves. You need to identify a person you can candidly talk to about the challenges of your caregiving experience. Another great source of support are caregiver groups or on line caregiver chat sites where you know others understand and have empathy for what you are experiencing. Finally, a healthcare professional with expertise in this area can offer counseling to help.
This has been a stressful month. My disabled husband developed a horrendous rash, which he described as being attacked by ants. I had three infections and injured my back while lifting him. A manuscript I’d been working on disappeared from my computer, and back-up systems failed. I asked an office store to scan the manuscript to a file I could edit, but the file was such a mess, I gave up. The only thing I could do was retype the manuscript.
No wonder I developed a case of the blues. This wasn’t like me, and I was used to caregiving. In fact, I’ve been in the caregiving trenches for 20 years, nine years as my mother’s family caregiver, seven years as my twin grandchildren’s guardian and caregiver, and close to four years as my disabled husband’s caregiver, with more years to come.
I don’t know what is hardest about caregiving for you, but isolation and loss of identity are hardest for me. Although I counter isolation with emails, giving talks, and volunteering, they aren’t the same as personal contact. Besides, I have little time for these things. While I’m caring for my husband, I’m maintaining a writing career, and marketing my books. What’s my problem? Keeping my identity as a writer is a biggie.
A disabled person requires extra care. Even with two hours of paid care a day, I’m always behind. “I’m not trying to push you,” my sweet husband declares. His comment doesn’t make my task list any shorter, or give me an energy boost, or make me feel better. The “To Do” list is often a “Not Done” list.
The Caregiving, Mothering Mother and More blog discusses the identity problem in a post, “I Don’t Know Who I Am Any More: Losing and Finding Your Caregiver Identity.” The author is a mother, school director, writer, and family caregiver, a new role. This role included driver, health advocate, cook, and dedicated companion—a combination that made her feel like a dog “with a choke collar on a very short chain.”
Jack M. Rosenkranz, J.D. writes about identity in his article, “Caregiver Identity Theory,” published in the “Jewish Press of Tampa.” Caregiver identity theory originally came from Dr. Rhonda Montgomery and Dr. Jung Kwak, he notes. The idea behind the theory is that caregivers’ needs are multi-dimensional. “Caregivers themselves often require individualized plans to maintain their own health and quality of life,” he concludes.
Well, my plan is to keep writing books and articles. But publishing has changed. All publishers—traditional, independent, and hybrid–expect authors to market their work. This is a huge job by itself. Add that to caregiving and there are times when I feel like I’m drowning. However, when I see my books on the Internet, and hold them in my hands, stress and work hours are forgotten.
While wife, grandmother, and family caregiver are part of my identity, at this time of life, writing is most important. I’ve made some changes in my writing schedule, including getting up earlier, posting daily on the Internet, and taking online marketing courses. Writing is my self-care and salvation. What’s yours? We can’t let caregiving rob us of our identities. Keeping our identities makes us better caregivers!
When a parent, spouse, or relative is diagnosed with Alzheimer’s, it can feel as if you’re starting an uncertain journey without any sort of roadmap. It’s a feeling that can persist even as the disease progresses. Often, caregivers look back during the later stages of Alzheimer’s and wish they’d taken earlier steps that would have made late-stage caregiving easier.
One particular area where this can crop up is music therapy for Alzheimer’s sufferers. In recent years, music therapy has been the subject of increased media attention and scientific research. There is now widespread anecdotal and data-driven evidence that music therapy is one of the most effective ways to reduce stress and improve the mood of Alzheimer’s sufferers, particularly those in the mid-to-late stages of the disease.
One of the biggest challenges to music therapy for Alzheimer’s patients is choosing the right music. That’s because the most effective music therapy programs use a patient’s favorite songs from their childhood, teenage years, and early adulthood. Even when late-stage Alzheimer’s has claimed other memories, the beat or hook of a once-familiar tune can dissipate stress, encourage cognitive activity, and transport sufferers back to the feeling of happier times.
If you are caring for a loved one with Alzheimer’s, it can be hard to find the right tunes for music therapy — especially if you start searching in the mid-to-late stages of the disease. By this point, it will likely be more difficult for your loved one to recall the artists and song titles they were most fond of growing up. More important, it will be harder for them to have the kind of conversations that make it easier to build a music therapy playlist.
If you have someone close to you who’s recently been diagnosed with Alzheimer’s, taking steps now could make it easier to care for your loved one in the later stages of their condition. To find the artists and songs your loved one responds best to, consider the following suggested steps and resources.
Start with Conversation and Research
The first place to start when researching a loved one’s childhood musical tastes is with conversation. Even if your loved one can’t remember all — or even most — of their favorite artists and songs from their early years, they will likely be able to remember a few that you can use as a launching off point.
It’s not necessary to have a single long and intensive conversation. In fact, it may depress your loved one to dwell on preparations for the progression of their illness. If this is the case, you may wish to have short conversations, or ask casually without bringing Alzheimer’s into the conversation. On the other hand, your loved one might enjoy the trip down memory lane, in which case you should feel free to mine their memories.
Once you’ve pinned down a few of their favorite songs and artists, you can turn to the internet for further research. These days, it’s easier than ever to explore a genre or decade of music. Whether you’re using links on Wikipedia, a music streaming service, an oldies satellite radio station, or a combination of all three, you can begin researching the sort of singers, bands, and songwriters that your loved one grew up listening to.
As a general rule, focus on the twenty-year period between your loved one’s fifth and twenty-fifth birthdays. Find out what kind of songs were on the radio at that time, and which artists were most closely associated with the ones your loved one enjoyed. You can use links between Wikipedia articles, suggested artists on streaming services, or whoever’s up next on the oldie station to make these connections.
See What Your Loved One Responds To
Once you’ve brainstormed a list of possible artists and songs, start putting playlists together to share with your loved one. Unless your loved one is invested in the project, don’t force him or her to sit down with headphones and a notepad. Instead, play the songs as background music while doing tasks together, during relaxing moments, or while driving in the car.
At this point, see how your loved one responds. If your loved one says they remember certain songs or certain artists, make a mental or physical note of which ones. If they seem to perk up at the sound of a particular tune, keep that song in mind for the future. If they’re humming along or bouncing their knee to the beat, that’s even better.
During these listening periods, you’ll start to get a better sense of which artists and genres your loved one connects with most. You can then start repeating this process, using the songs and artists your loved one likes to get a better sense of which other songs and artists they might be inclined toward. You can then go back to your research to brainstorm new songs to try out.
The more time you spend on this, the more you can become familiar with the music from your loved one’s earlier years. As you become better versed in the music of the time, you’ll be able to make smarter and more educated guesses about your loved one’s tastes. You might also find that you begin to develop a deeper bond with your loved one through this process, giving the two of you something to talk about that truly hits home.
Create Personalized Playlists for Music Therapy
Whether your list ends up getting narrowed down or dramatically expanded, you’ll soon be able to generate a full collection of songs for future music therapy. At this point, you can begin to put half-hour or hour-long playlists together, selecting the songs that you think will be most joyous or most calming for your loved one.
Of course, there’s no need to shelve this collection during the early stages of your loved one’s Alzheimer’s. If you’ve found that these songs have had a positive effect on your loved one, you should continue to play them and enjoy them together.
You may even wish to take more trips down memory lane. These days, it’s just as easy to research old radio shows or movies that your loved one may not have heard or seen for several years. While plot-driven narratives are hard to follow for mid-stage and late-stage Alzheimer’s sufferers, reliving these memories can be invaluable for those in Alzheimer’s early stages.
When the Time Comes, You’ll Be Ready
By doing this kind of legwork during the early stages of Alzheimer’s, it is easier to provide music therapy for a loved one when they reach mid-stage or late-stage Alzheimer’s. While this can be an extraordinarily difficult time for you and your loved one alike, it can be made easier if you’re able to provide your loved one with moments where he or she feels comfortable and at peace with the world.
At this time, it’s important to make sure that your loved one is comfortable when listening to his or her music. Consider investing in a padded pair of over-ear headphones, which can make it easier for your loved one to focus on his or her music. Also, remember that music played at loud volumes can be stressful or disorienting for those suffering from memory disorders. Make sure to test the volume of the music before playing it for your loved one and try turning it down if the volume seems to agitate him or her.
In addition to music therapy, there are a number of other therapeutic activities and exercises for those with Alzheimer’s. More and more Alzheimer’s caregivers are integrating art therapy and nature therapy into the care they provide for Alzheimer’s sufferers. These therapies — either in conjunction with music therapy or on their own — may also help you in caring for your loved one.
Larry Meigs, President & CEO of Visiting Angels
Visiting Angels is America’s choice in home care. Since 1998, Visiting Angels locations across the country have been helping elderly and disabled individuals by providing care and support in the comfort of home. In addition to senior home care and adult care, Visiting Angels provides dementia care and Alzheimer’s care for individuals suffering from memory disorders. There are now more than five hundred Visiting Angels locations nationwide.
In the face of overwhelming odds, we put ourselves in an often impossible situation, and keep doing it armed with little else than love—while spending blood, sweat, and treasure. I wouldn’t hang around somebody who treats me the way I treat myself, and I’ll bet you wouldn’t either. We treat ourselves mercilessly—thinking somehow because of guilt or whatever, we’ve got to push ourselves to the breaking point.
We’ve all heard the story of military drill instructors who look at a line of soldiers and ask for a volunteer. Then, everyone steps back—except the one guy who wasn’t in on the planned exit. He didn’t step back.
As caregivers, WE didn’t step back. We show up every day. Sometimes we do it well—other times, we make mistakes. Either way, our attendance record is perfect even if our service record isn’t. Regardless of what we do or don’t do, we still beat ourselves up because we didn’t do it as well as we think we should—or somebody else thinks we should.
There is a word for caregivers to remember: Grace. To me, Grace is the most beautiful word in the English language. I married a woman named Grace. I love saying her name. As caregivers, we rarely give ourselves grace—to our detriment. Healthy caregivers make better caregivers, and we cannot exist in a healthy state when carrying the crushing burden of guilt.
This kind of caregiver guilt isn’t about sins that get great press. Those things earn guilt. Rather, this type of guilt comes when a child is born with a disease or disability—or even something as simple as wanting to take a break for a day …or even a few hours. The list of things we punish ourselves for stretches beyond the horizon, but none of those things help us live a healthier life. We’re no good to anyone if we stroke out or become impaired ourselves by pushing ourselves to the breaking point.
Today is a good day to be a healthy caregiver, and that journey starts with extending grace to ourselves.
Humor May Be Antidote For Pain Of Death For Patients, Survivors
Just weeks before Christmas some years ago, Shirley Rapp and her family faced the devastating news that she had what appeared to be a terminal illness.
But that didn’t stop Rapp from wanting to do one last round of Christmas shopping for her kids. Her daughter, Karyn Buxman, a self-described neurohumorist and RN, went along. When the mother-daughter duo stepped into a St. Louis-area stationery store, Rapp picked up a day planner that she admired, turned to her daughter and quipped: “If I make it past Jan. 1, will you buy this one for me?”
That’s when Mom and daughter burst into laughter that attracted every eye in the store.
For some folks, the process of dying comes with less stress when it’s something of a laughing matter. Not a yuk-yuk laughing matter. But, at its simplest, a willingness to occasionally make light of the peculiarities — if not absurdities — that often go hand-in-hand with end-of-life situations.
An aging generation of boomers, the oldest of whom are now 70, grew up to the background sounds of TV laugh tracks and are accustomed to laughing at things that might not always seem so funny. There’s even a non-profit organization funded by donors, conference revenue and membership dues, whose mission is simply reminding people that laughter is a core ingredient of all facets of life — even end of life.
Humor is particularly important when folks near end-of-life situations, says Morrison. Turning 70 hasn’t stopped her from engaging in activities specifically to make her laugh — like hopping on her pogo stick. “While death cannot be cured, your frame of mind is something that you can change.”
Her group has some loose guidelines for the use of humor among the dying. Most critically: Make certain that you know the ailing person very well before using humor with them.
On its website, the National Cancer Institute urges patients to build humor into their day-to-day lives, in ways as small as buying a funny desk calendar and watching comic films and TV shows.
Buxman, who earned a lifetime achievement award from the AATH, gives speeches on the importance of life’s comic moments. A former hospice nurse, she takes humor very seriously. She has studied the impact humor has on the brain and on the stress levels of patients in their final days. The right humor at the right time, she says, can infuse the brain with pleasurable hits of the stimulant Dopamine, decrease muscle tension and anxiety in the body’s nervous system, and momentarily diminish feelings of anger or sadness.
As it turns out, her mom survived her initial illness — only to later develop a fatal form of Alzheimer’s. Near the end, Buxman took her mom to the doctor’s office — at a time her mom had stopped responding to most external stimuli. While sitting in the waiting room, Buxman could hardly believe it when her mom uttered, “Make me laugh.”
Buxman knew this was the time to share a funny, family memory. She recounted to her mom the story about the time the two of them visited the kitchen section at a large department store and saw a display of frying pans cooking what appeared to be artificial eggs. “This food looks so real,” her Mom said, poking her finger into the fake food. But the egg was real, and when the yolk popped, it oozed all over Rapp and the display.
“As I recounted this story, Mom’s face moved and her eye’s sparkled — and the two of us just doubled-over with laughter,” says Buxman. “Even near death, we can still communicate to the most primitive part of the brain — with laughter.”
But family-related humor isn’t only acceptable in terminal situations — it’s often helpful.
Just ask Paula McCann, an elder attorney from Rutland, Vt., who writes the blog onthewaytodying.com. She recalls when her then 83-year-old father, John, who was diagnosed with Alzheimer’s, requested to die at home. His children and wife took turns caring for him. One evening, McCann sat with her mother at her father’s side, shortly after he had been administered his last rites. Mother and daughter started to discuss where his soul was at that moment. McCann suggested to her Mom that perhaps it was in a holding pattern, while God reviewed the right and wrong he’d done, before allowing him into heaven. That’s when her mother quipped, “He’ll be there forever.”
A sense of humor about all of the drugs patients deal with at life’s end, helped Ronald Berk, former assistant dean at John Hopkins University, through a rough patch. His wife, Marion Smith-Waison, a former OBGYN doctor, was very ill before her death 18 months ago. She had scheduled a meeting at their home with folks offering holistic medicines. When Berk entered the room, a drug counselor asked him, “Are you taking any medications?” Berk shot back, “Yes, I was taking crack — but I gave it up for lent.”
Berk insists humor at that stressful moment offered a critical “release valve.”
Chip Lutz, a professional speaker who retired from the Navy years ago, recalls the importance of shared humor before his father, Eugene, died last year. Trying to squeeze an extra hug out of visiting family members, Eugene often cajoled them with, “Well, this might be the last time you see me.”
But Eugene’s son, Chip, had the perfect response. “You can’t die yet — I don’t have your eulogy done,” he shot back.
Few people hear more morbid jokes than hospice workers. Several years ago, Allen Klein, an author and motivational speaker, volunteered at a hospice in the San Francisco Bay area. An elderly woman he was assisting told him that after she died, she wanted her husband’s bedroom repainted — with her cremated ashes mixed into the paint.
“Why would you want that?” inquired a confused Klein.
“So I can look down at my husband and see if there’s any hanky-panky going on.”
Unfortunately for many of us, the pain of losing somebody we love, or people we have had a mixed relationship with, can be made worse by the presence of regrets. Mourners can be left struggling with thoughts like, “What could I have done differently?” “I wish I had gone to visit him or her more often.” “We were not very close, and now we never will be”.
When grief situations are touched with regret, each mourner must search for a way to find peace within themselves. Obviously events, words and actions that occurred in the past, can not be changed. There are two main options available when dealing with regret, either suffer indefinitely, or find a way to forgive oneself and perhaps make changes about how to behave in the future.
People whom have spoken too often in anger may resolve to become more diplomatic and patient in their communication. Those suffering because a person they cared about died without knowing how much they were loved or respected can choose to become more expressive. If saying intimate things is unfamiliar to you, perhaps writing a letter or even a song or poem may be easier.
If you wish you had visited more often when a loved one was alive, look around at friends and family members still living and reach out more regularly. When physical distance is an issue using emails, phone calls, Facebook or sending cards can still be very satisfying.
Some mourners are able to forgive themselves for past disappointments more easily by writing a letter to the deceased and saying how they feel now. Others can make a financial contribution or volunteer time to an organization that their loved one would have supported.
If you are struggling with regret, it is vital to understand that you can only change your current self and future behavior.
Ready to avoid future regrets in the future? Try this healing technique called: Choose 5 Memories
People who tend to be aggressive or unappreciative with loved ones could benefit from this healing technique designed to reduce accumulated tension: Transition 10
Many of us are so stressed out or overwhelmed by our daily responsibilities that our behavior becomes less skillful. This article about ‘Avoiding Caregiver Burnout‘ may help.
One of the hardest circumstances for grievers to recover from can be losses due to suicide. If you or someone you know has been effected by suicide, please forward them this information about a great organization called: The American Foundation for Suicide Prevention
As always, please share any comment, suggestions or advice with our other readers in the comments section below.
Best wishes to you,
As family caregivers, it can feel as though there are more losses than gains in our lives. Our loved one loses their health and independence, and we can lose our time, identity, patience, and even careers. Change and loss become dependable constants in our caregiving life.
One of the most common complaints of change amongst caregivers is the feeling of isolation. With time as our most valued commodity and stress as our new and uninvited best friend, making room for the support we need is very often one of the first things we let fall by the wayside. We are simply too busy, and if we aren’t too busy, we are simply too tired to engage in the things that once made us excited.
Adding to that can be our friends who sometimes call less frequently, or make assumptions that we are probably too busy to attend the party and so the invite never gets sent, or we just can’t muster the energy to go to book club because it’d mean having to do one more thing that day. And sometimes it’s us who pull away from the friend that continues to perkily say of our terminally ill partner or parent, “They’re going to get better, I just know they will!” because that kind of fantasy doesn’t help us at all.
All of this is reason enough to say, “Good riddance!” to people for a while. Why bother with making plans you may have to cancel, attend parties that you could need to leave mid-champagne toast, or worse yet, need to get off the couch and fix your hair to attend? I give you full permission to say, “See ya!” to all that. But in saying goodbye I am going to ask you to say hello. Say, “Hello” to someone new, someone like you, someone who is also a caregiver. Why?
Sharing your experience with someone else that speaks your language with no need for translation is a powerful way to be supported by someone who understands where you are coming from. If there is only one thing that you do for yourself this month, I urge you to make finding a new friend in caregiving be that thing.
Where might you find your new BFF? How about daring yourself to attend a local caregiver support group meeting? Or, there may be people who are members of caregiving websites you visit (like this one!) that you could send an email to and introduce yourself. Or you could do what I did in one of the most uncharacteristic moves of my introverted life…
When my dad was living in the memory care unit of an assisted living, I knew no one who had a parent in the same environment. I felt like an explorer without a map. The pain of watching his decline was on certain days unbearable. Visiting with him daily, I began to notice one or two other daughters passing me in the halls with frequency yet we never gave more than polite nods of hello to one another. Until the one day my caregiving experience changed forever and for the better.
Dad was one of two men living in the unit. The other man’s daughter was one of the women I saw just about every time I was visiting my father. She and I had done a lot of hello nodding to each other.
One fall afternoon as I was leaving for the day, this daughter was walking out the door about 40-steps ahead of me. Giving no thought to what I was about to do, I sprinted up ahead to catch her. Winded and catching my breath (because caregiver’s true confession: I wasn’t exercising regularly) I introduced myself and quickly realized that I was talking to one of the sweetest people I would ever meet. She blurted out her latest issues; I nodded and responded with lots of, “Yes! Me too” statements and before we left the parking lot, we had exchanged emails and scheduled a lunch with another daughter whose mom was also living in the unit.
That lunch with two strangers had happened one year before my dad died. To this day, five years later, the three of us, now former family caregivers, are still friends. What is unique is that we each were born in different decades, yet the experience of caregiving let us transcend our ages. We spent hours sneaking out to the diner for lunch after visiting our parents to share our stories and latest caregiving conundrums with each other. We looked in on one another’s parents and reported back with anything worthy of concern. We would fill our email inboxes with funny stories and updates. We took proactive trips to visit the nursing homes that we would eventually need to admit our parents into after inevitable declines in their health. We combined our families and shared a Christmas celebration in the unit the year our parents were not well enough to travel. We were there at the funerals with lots of chocolate, flowers and emotional support. And, we were there and are still here to offer listening ears to the unique feelings that appear post-caregiving.
When I think of my caregiving friends, I’ve never felt to be truer the expression, “I don’t know what I would have done without you.”
Caregiving and the people you will meet change your life in the most new and unexpected ways. Why not go out and meet one of these people today? All you need is the word, “Hello!”
When you’re caring for someone who verbally abusive or requires every moment of your attention, it’s incredibly emotionally draining. It’s unrealistic to try to not be offended or learn to live without alone time. It’s realistic to learn how to recover emotionally and regain your balance.
Assess the situation
Take a moment to think of how you really feel. If you’re upset, what does ‘upset’ break down to? Disappointment? Frustration? Longing for appreciation?
Think about how you feel and why you feel that way and you might just be able to make the situation a little easier to improve.
Reframe the situation
People usually aren’t being inconsiderate because of something about you, it’s usually about them. Someone snaps at you because they’re over-tired. Someone is late because they overslept. Someone lets you down because they’re caught up in their own needs.
Peoples actions aren’t always a reflection of how they really care about you or value your help.
We tend to overestimate people’s physical needs. It’s okay to push someone to try to be more self-sufficient — or a little patient — if it’s not going to put them in danger.
Agreeing to do things you can’t possibly do or taking on more than you can handle isn’t necessarily better than saying “no” with love.
Accept your own abilities
No matter how hard you try, you’ll screw up. You’ll let people down. You’ll make mistakes. You’ll hurt people’s feelings. That doesn’t mean you’re a bad person, it just means your a person.
When you start to feel guilty about something, ask yourself if it’s really something you were responsible for. It’s okay to feel sad about how things turned out, but there’s no need to take on the blame.
Even if you were responsible for something bad that happened, remember that we all do things we regret. Think about what lessons you can learn and forgive yourself.
There’s no need to go it alone. We all feel alone sometimes, but there are things we can do to lessen that. Connect with other caregivers, online or in person, and reach out to your social network.
You deserve support, encouragement, and understanding.
Remember why you’re here
Some days you probably want to walk out the door and never come back. But you don’t. No one is really forcing you to stay, as much as it may feel that way. What keeps you there?
Remembering the reasons you have to stay — and reminding yourself that it’s a choice — can help you feel in control of the situation.
Music plays a significant role in nearly everyone’s life, but for some people it represents much more than an invitation to dance or a soundtrack for the morning commute.
Researchers have found that music therapy provides a diversion from negative feelings and helps manage the pain of not only adults, but of children with developmental, physical, behavioral, and neurological disabilities.
It also increases range of motion and motor skills, and in some cases is a replacement for medication. In short, its therapeutic uses are many.
“Music is invaluable to people with special needs, allowing them to express themselves non-verbally,” says Travis Perry, a music teacher for more than 35 years and inventor of ChordBuddy, a device that makes guitar-learning easier for anyone – including those with disabilities.
“Veterans can use music to help cope with PTSD as well as other physical injuries. Senior citizens can learn to play the guitar, which helps build hand strength.”
One recent study showed that music therapy can even help children cope with routine immunizations, making them less stressed – and their parents less stressed as well.
While music therapy is known to be fruitful for the person needing therapy, the results also can be a gratifying for the teacher. Perry says he’s found it especially satisfying to teach the guitar to autistic children, who can be challenging but ultimately rewarding pupils.
In fact, a small number of people with autism are musical savants, according to the American Music Therapy Association, but all benefit from music therapy interventions to enhance their social, communicative and motor skills, among other needs.
Generally, children with autism aren’t able to make what would be considered a pleasing sound on the guitar without some assistance. Perry uses his invention to help them. Instead of positioning their hand into the correct chord positions – often tricky for even able-bodied learners – they can just press a tab that results in a clear, strong chord sound.
Perry, who has appeared on the popular TV show Shark Tank, didn’t actually have music therapy or people with special needs in mind when he invented ChordBuddy. He was trying to help his daughter learn to play and her frustration became his inspiration.
“When learning an instrument, it’s important to have success right away, and that can be difficult to do with the guitar,” Perry says. “Most people give up within the first couple of months and the guitar ends up in a closet. That’s why I’m so excited when I know I’ve been able to help a special-needs child, a veteran with PTSD or a senior citizen with arthritis make music.
“You realize the odds they’ve had to overcome, both with the usual hurdles to learning and their personal difficulties, and that’s very fulfilling to me.”
Travis Perry has been a music teacher for more than 35 years and is the inventor of ChordBuddy. His invention was showcased on ABC’s Shark Tank. He regularly makes appearances and speaking engagements at schools, and donated his invention to various charities including The Wounded Warriors Project.
When I first moved to Florida many years ago, the expression “Cone of Uncertainty” caught my attention. During hurricane season, it refers to the cone-shaped path that a storm might potentially follow at any given time. In other words, the weather forecasters can’t really pinpoint when or where it might land.
Turns out, that’s also a way to describe how we grieve.
Those familiar with Elizabeth Kubler-Ross know that she divides the process of grief into five stages – denial, anger, bargaining, depression and finally acceptance. To that neat package, I say, “If only it were so simple.” Imagine being able to identify that you’re angry with only two more stages to go, or feeling depressed, but relieved that acceptance is just around the corner. Unfortunately, it’s not that linear. Grief will pinch your heart months or years later walking into the hardware store and smelling pipe tobacco, or driving in the car listening to the radio and hearing a parent’s favorite tune. It is not always loud or obvious, and surprisingly not a constant.
Sometimes deep sadness is coupled with a mix of other emotions. If a parent was suffering you feel at peace knowing their pain is gone. You may be relieved that the stress and challenges of caregiving are at an end, yet at the same time feel unmoored because the concentration and energy you devoted to this job are no longer required. For caregivers in particular, grief can sometimes seem insurmountable for this very reason.
In times of great loss, regret can often keep us stuck. The death of a parent is the death of hope. You may have longed for a different relationship with them. One in which you said or heard, “I love you,” or “thank you,” more often. Our parents also tend to be the keepers of family history and with their deaths we lose our connection to the past.
Guilt is another difficult emotion to overcome. You wonder if you did enough or should have done things differently. Harsh words were spoken and apologies are too late. Now is the time to remember you’re only human. Being the perfect child is just as unrealistic as being the perfect caregiver. Stop judging yourself. Instead create something positive out the negative. Maybe your father liked his cats more than his kids. Make a donation to The Humane Society to honor his memory. Maybe you wished your mother had spent more time with you as a child. Look into becoming a Big Brother or Big Sister or volunteer as a reader to kids at the local elementary school. I’m not suggesting you leap into anything immediately, but there are ways of softening the guilt and regret that attach themselves to the death of a parent.
Keep in mind that the experience of losing a mother or father will be different for every sibling. It depends on your relationship with that parent; what words remained unspoken; and how you viewed your contribution to their well-being, not just at the end, but throughout their lives.
Anniversaries of a death or certain holidays can be tough. A year after my Dad died, I raised a glass of wine, played Puccini’s Madame Butterfly (our favorite opera) and said, “Daddeo, wherever you are, I hope it’s interesting.” He was fond of telling me that heaven seemed like a very boring place. On Mother’s Day, I do all the things my mother loved to do – thrift shopping, listening to Barbara Streisand CD’s in the car, eating lunch at Too Jay’s, then I come home and tell her ashes all about it.
If you don’t want to be alone, plan ahead to get together with people who will be emotionally available for you. Just like everyone grieves differently, your friends, family and co-workers will support you in different ways. Not everyone can be a good listener when you need to talk through the grief. Some people are better with concrete tasks like bringing over dinner or taking care of a chore you’ve been putting off.
Midway through the experience of attending to both my parents, what concerned me was something that often occurs with caregivers. Our identities merge with the task of caring both physically and emotionally for an aging parent and at some point the question arises – “Who will we be when the caregiving ends?” You might discover this type of service is something you’re really good at and you want to do more. For someone else, the idea of being responsible for another living creature, even if it’s just a pet, is way too much. The point is to be gentle with yourself, no matter what you feel.
Keep in mind, there’s no set timetable for grieving and no right way to do it. Give yourself permission to experience moments of joy amidst the mourning. It does occur. Don’t try to be all things to all people. If that means a moratorium on helping others deal with the loss, so be it. If you need help, ask for it – from clergy, from friends, a support group or a grief counselor.
Grief, which is so often muddied with guilt, regret and anger, can be exhausting. Doing what we can to make things right with our parents before it’s too late, opens us to the possibility of experiencing what Mary Pipher, psychologist and author, refers to as “good, clean sorrow.” It’s certainly something to hope for.
Have you ever sat in a waiting room, stared at a picture, and realized it drove you nuts? Our loved ones may feel the same way if they don’t like the artwork in their home or room. Some artwork is actually upsetting. We can make loved ones feel at home by paying attention to the art.
In fact, many believe art can heal. That’s why hospitals display paintings, sculpture, place artwork in gardens, and have volunteers that distribute art. If the patient doesn’t like the artwork in their room he or she may choose a different picture from the art cart, a decision that makes them feel more in control of their life.
Mayo Clinic in Rochester, MN thinks there is a connection between art and healing. In its pamphlet, Art & Healing, the clinic describes this connection. “Mayo Clinic has always believed that restoring the mind and spirit is an important part of making the body well—and that art and science together play a role in the healing process.” The pamphlet goes on to say that Mayo’s art collection, which includes all branches, humanizes its medical environment and can be a source of hope in a time of uncertainty. Mayo Clinic’s art collection is extensive: paintings, murals, mobiles, sculpture, fabric art, furniture, seasonal displays and more.
While family caregivers like us can’t develop extensive art programs, we can tap the power of art. Asking our loved ones some questions is a good place to start. What kind of art do you like best? Do like lots of different colors or prefer one color? Which do you prefer, traditional art, folk art, modern art, paintings, different kinds of prints, photos, or sculpture?
The answers to these questions help you determine which art to display. These suggestions will also be helpful.
Use art to prompt memories
Years ago, family members chipped in and took Pampa, the patriarch of the family, to an historic Civil War battle site. As we walked along pathways, we came to a monument honoring Minnesota soldiers. Dad wanted to take a family photo here and we flagged down some passing Boy Scouts. I had the photo framed and Dad loved it.
Hang pictures lower for the disabled
My husband spends his days in a wheelchair. I built a wheelchair accessible townhome for us. When I hung the pictures I positioned them lower than usual so my husband could see them without hurting his neck. Instead of putting the television above the fireplace, which is a popular trend, I placed it on a shelf to the left of the fireplace.
Display holiday artwork
Seasonaldecorating can boost a loved one’s spirits. Because we have to keep traffic patterns clear for my husband’s wheelchair, we don’t have a large Christmas tree. Instead, we have a huge poinsettia (a gift from a relative) and display family decorations. Our home looks festive.
Changing artwork keeps loved ones interested in their environment. Put a picture away for a while and replace it with another one. Unify mismatched artwork with similar frames. Black frames always seem to work well. So do wood frames.
If you don’t have any artwork, take out art books from the library for your loved one. Discuss the books together. When we pay attention to artwork we are expressing love. Being smart about art makes loved ones feel better and we feel better too.
We talk a lot about how rewarding and meaningful caregiving can be. Most of us would never trade our responsibilities, but that doesn’t mean caregiving isn’t the most difficult thing we’ve ever done.
Instead of trying to sugarcoat it, how about offering caregivers some real support?
I cared for my mom for 10.5 years after her stroke. She moved in with me when I was 29 and moved to an assisted living when I was 40. Now she is about to transition to a Nursing Home. So scary, because as many of you know, out country SUCKS at taking care of its citizens, but especially the elderly.
What many didn’t realize is that, although she hasn’t lived with me for two years, I still have to deal with the pads, the briefs, the meetings, the unanswered call lights, the endless phone calls (sometimes 50+ a day) because she is lonely.
It’s exhausting. It’s guilt ridden. It’s unforgiving. – Greta M.
You are so right, some days you feel like you cant even BREATHE! My dear mother in law has had Alzheimer’s over 17years already! My mother has had dementia over 3 years and we take care of her at home 24/7! The stress level among the siblings is through the roof! God Bless all caretakers its the hardest job in the world and unless you have lived it you have no clue. – Tammy B.
Everyone thought I would get a break when my Granny had to be admitted into the nursing home when she broke her shoulder. They called me numerous times daily and would ask when I would be there to sit with her because with her Alzheimer’s she was a handful for them. It was just as exhausting and I hated that she was there. – Chris M.
Caregiving has been my life for 4 years now…it is the worst. I lost my retirement, I’m losing my home, and frankly people are sick of hearing of my son and his illnesses. The worst question of all “when will he get better?” again, no, he won’t ever get better. – Paula P.
My husband has been battling head, neck, and lung cancer for 5 years. He gets his health care through the VA because his cancer was caused by Agent Orange. While we have no financial issues, the stress gets overwhelming just the same. His 3 kids have never offered to go to a doctors appointment with him, or stay with him to give me a break. Sometimes I just want to yell at someone. – Brenda I.
It’s all about attitude. You can either sit around woo-is-me-ing or you can find joy in little things and not be as miserable. I’ve been caring for my father with dementia for 7 years now. I’m 36, not married, living with my parents to do this, have no clue how I’ll survive or even work after all is said is done and children are now out of the question. Sometimes I succumb to the misery and have a good cry. But the next day, I list what I’m thankful for, even if it’s just coffee, my cats, or the weather; try to put everything back into God’s hands; and smile when dad says “good morning” or “I love you” back to me or my mom. – Susan F.
It’s all about how you spin the situation. I’ve been taking care of my husband for 1.5 years as we battle throat cancer. I’m no iron maiden, or super woman. I spend my days exhausted and often in tears. Caregiving does suck, but you’d best suck it up and get a handle your misplaced frustration. – Fiona S.
I took care of my mother for 20 years until she passed. While I was able to work, that was my only outside activity. It messed up my young adulthood and my adult life. I had no vacations during that time. My sibling hardly ever stepped up and helped out cause he lived a couple of hours from me. Like many caregivers I have diabetes and heart disease. It takes a large toll over time. Would I do it again…No, not in the manner I did it. I now have no children to help me out in my old age. I now advice people, take care of yourself FIRST. Seek balance and don’t make that sever of sacrifices! – Karen T.
I’ve been caring for both of my parents for over 21+ yrs. I’m tired of this. When My Dad Asked Me 21 YEARS ago to stop working to take care of them, I never thought it would be this hard. My mom is stage 3 Alzheimers and can’t walk due to her stroke and my father had leukemia.
I hate it when people ask if I need help to just give them a call only to come up with an excuse.
I even become angry when these so called caregiver experts giving advice when they themselves aren’t experience caregivers. Many of these so called experts always have the same excuse when I challenge their credentials as to call this number or person about their caregiver experience. Yet I’m grateful to the very few who contacted me saying that they have experience in taking care of a family member. – Bob H.
It’s not an easy road to travel. There are organizations that raise money for research, but none for caregiver assistance. There are many that offer help, but it comes with a hefty price tag. After several years of suffering from ALZ, my sweet Mother left this earth on Aug. 12. I was her caregiver during these years. I watched my Mom totally disappear and at the end, her family was with her as she drew her last breath. – Pamela M.
I’m my moms caregiver and its draining, my life isn’t what I had expected… but to not have her here with me and our family that would be more devastating. – Harper R.
Talking about how hard caregiving can be is not meant to make you feel bad. It’s just a hard place for caregivers. It doesn’t change that we love the people we support and want to be sure they’re ok! – Karen B.
It’s so hard because you feel guilt for wanting time alone but I’ve been doing this caregiving now for almost a year by myself after my father was killed, my mom had a stroke and is in a wheel chair and has no left leg control…she’s a total dependent. I am an only child, 35 and I am already burnt out.I have some help in the mornings so I can work, but all nights and weekends are on me and I am exhausted! – Lisa R.
Caregiving IS rewarding. And it can suck. At the same time. I’ve been caregiving to a family member for 18 years and helping a team of carers do the same and it can be inspiring and uplifting. The ingenuity and love and generosity of spirit of other caregivers inspires you. And the strength of spirit of the person being cared for, if you are lucky enough for that to be intact. But, yes, it is exhausting and at times you’re on your knees thinking “What can we do next that might be of use as so far I’ve done everything and I don’t think I’m helping.” All you can do is be there or make sure others are when you can’t be who are loving and generous of heart and… that’s about it, I guess. – Phil D.
It sucks. It’s draining. It’s tiring. It’s hard. It’s painful. It’s lonely. It takes someone special to do it. It’s what we do. We never stop. – Jeannine G.
It really does suck. It sucks your energy and your attitude. Some days, it sucks your sense of humor right out of you. But we keep on, caring for that loved one as best we can, given the rotten circumstances. – Gretchen M.
We have long term health care insurance that we can access for assistance, but here’s the thing. How to convince my sick husband we need a stranger in the house to help us out? Exactly when will he think it’s “time” to call them in? I work full time and teach at a law school one class a week. And get the house cleaned, dogs fed and groomed, lawn mowed and other landscaping done, etc. yet if I want any time to myself – a conference out of town – even a late dinner with a girlfriend – I get the passive aggressive guilt treatment. I have cancelled out of and left early from more obligations I’d like to think about. He refuses to see an end of life therapist and some of his family is somewhere on a barge on the River Denial. His illness is terminal, there is no more treatment available and things are just going to get worse. So I’m not feeling the “rewarding” part at all and I don’t think your attitude needs any sort of adjustment. Keep enough of you going so you can live and enjoy life after they are gone. – Melissa M.
This damn job is no fun, but yes, there are some funny moments. It’s also heartbreaking, nerve racking, anxiety filled, scary, worrisome, difficult…I could go on all night. No, it’s not rewarding, but my parents deserve the best I can give them and so much more. – Frank A.
Its a miserable existence! Pee and crap everywhere, wandering, literally being beat up, scratched and bit, just for trying to clean her up! My MIL hallucinates and talks crazy all the time. Disassembles every object in the house, and cannot be left alone for 5 minutes! – Vickie B.
I didn’t think it was gonna be this overwhelming and such a big life changer, but I’ll do anything for my 90 yr old Grandma. My reward is God letting me spend our days together. – Adriana E.
You lose your loved one, you lose yourself, you lose your family and friends. And you are unable to help your children and grandchildren. – Elsebeth P.
Some comments have been edited for clarity or grammar.
As caregivers, we spend a lot of time with the person we’re taking care of. Sometimes that leads us to neglecting other relationships…and sometimes the time is never quite right to say what we’ve been meaning to say.
Here’s what our community members wish they could say to someone they love, in 5 words:
I got my bachelor’s degree. To my dad. Quitting school was the one thing about which I felt I’d let him down. – S.S.
I understand and forgive you. – S.L.
I’m sorry I hurt you. – T.M.
I value your love Mom. – S.S.
I love you so much. – K.E.
Why do you do this? My dad never calls or talks to me. What did I do wrong? – J.D.
Wish we had more time. – K.M.
If only I had known. – T.R.
Thanks for always being there. – P.V.
‘I love you’ to my dad…we never said this to each other. – J.E. & D.B.
“We finally planned our wedding-date” to my Nana, she helped raise me and passed on May 2nd 2015. She will not get to see get married. – D.Y.
You tried your best, Dad. – J.W.
I love you. I’m sorry. – F.H.
Thank you grandpa and grandma!!! – A.S.
You were always my hero. – C.R.
Thank you for raising me. – S.R.
I know you meant well. – P.C.
I wish I did more! – L.M.
Wish I could have helped. My close friend lost battle with addiction. K.C.
Goodbye I love you Grandpa! – D.S.
You were always my rock! (To my Daddy) – K.J
Thank you and I’m sorry. To my mom. – P.V.
Tell me your story, Grandpa. – C.H.
Please forgive me. I’m sorry. – B.P.
I’m taking you home now. – S.S.
Why didn’t you tell me? – K.K.
Your granddaughter is 21 today. – S.H.
I forgive you dad! – L.S.
You can let go now. – C.V.
Dad, you tried your best. – B.S.
You have changed my life (for the better) – A.Z.
You were my life, Garry. – S.N.
You’re the definition of cool! – S.R.
I love you. To a boyfriend that died in the Army. – E.H.
Sometimes we just can’t get it out in five…
I love you thank you for raising me I’m sorry I wasn’t appreciative and loving to you I should of listened to you about him I’m a good person because of you. – R.G.
Thanks Daddy for being the best!! I love you!! – J.R.
Take care of yourself. We’ve all heard this advice. A short walk may be one way you care of yourself. You may bake a batch of cookies. Going to bed a half hour earlier may also be self-care. Or if you’re like me, you may sit down and read for pleasure. But knowing you need self-care and practicing it are two different things.
I know self-care is important, but it became more important after I fractured a bone in my right foot. I wish I could say I hurt my foot water skiing, or hiking in the mountains, or playing tennis. None of these are true. My excuse is boring: I hit my foot on a chair leg. “Well that hurt,” I muttered to myself.
Five days later my foot started to swell. It turned red and my toes looked like fat sausages. The swelling moved to my ankle and then half-way up my leg. My right foot continued to swell until it was twice the size of the left. Since my primary care physician was out of town, I saw a Nurse Practitioner, and she was excellent. She ordered an x-ray and, as often happens with a stress fracture, the x-ray didn’t show up. The Nurse Practitioner suggested another test.
“If the test shows a fracture, you will tell me to wear a boot for six weeks, right?” I asked.
“Yes,” she answered. The test is expensive and, to save time and money, I decided not to have it. Besides, I already had a protective boot in my closet, leftover from a fractured ankle I had last winter. The nurse practitioner told me to take over-the-counter pain medication, and stay off my feet as much as possible.
“Good advice, but I’m my disabled husband’s caregiver,” I replied. She nodded her head in understanding.
Hobbling around in a boot is tiring, and out of necessity, I added new self-care steps to my list. I plan driving routes more carefully. I elevate my feet in the morning and again in the afternoon. I wash dishes at lunch time, and stash the evening dishes and pans in the dishwasher, a surprisingly helpful step. I asked the church Caring Committee for ready-to-eat meals, and a member of the congregation delivered enough food for three dinners.
“You have to stop breaking bones,” my sister-in-law declared in an email. She was right. So I took the most important step and made an appointment with my primary care physician to discuss osteoporosis therapy. According to the Nurse Practitioner, new medications have been developed that slow the progression of osteoporosis. I hope my doctor will prescribe medicine that helps me.
Did you injure yourself? Did you catch a bad cold? Were you diagnosed with a chronic disease? If so, it may be time to add new self-care steps to your day. To care for your loved one, you must care for yourself. Small self-care steps can have a big impact on your energy and health.
For most of us, being a caregiver is more like running a marathon than a sprint, and few things can dehydrate you faster than the relentless demands that come with this role. I’m not just talking physically, but emotionally and spiritually, as well. Those oft-ignored symptoms of headaches, fatigue, dizziness, confusion or anger can all be signs that our bodies and minds are depleted and out of whack.
So, even though we may not be able to mute the cell phone, hand our duties over to someone else, or get away for a two-week vacation, there are small ways to replenish that don’t take a large investment of time, or even money.
One caregiving friend I know takes walks with her beloved dog a few times a day. Hard to say who enjoys those breaks more. Animals are always in the moment, and they can teach us to do the same. Own a feline, instead? I can’t be the only person who’s gone into a trance while stroking my cat’s pointy little face. Research shows that petting a beloved fur baby can release a spray of endorphins that make you feel more calm and peaceful.
The benefits of music have been scientifically documented. It can reduce stress, relieve pain, and help insomnia. When traveling back and forth between Tampa and Orlando to visit my folks, I found that singing along with Barbra Streisand tunes always calmed me down. Would that I had Bab’s voice instead of her nose.
Art saves. Whether it’s a coloring book for grown-ups or a half hour of scrapbooking or knitting, focusing on a creative act gives your right brain a needed boost. It’s also the perfect escape from the barrage of information and decisions that a caregiver’s left brain must deal with every day.
Pay attention to the natural world around you. Listen to the birds chirping away. Notice the plants that are throwing out shoots or flowers. Admire the tenacity of the sugar ants still marching across the kitchen counter, despite all your extermination efforts. Oops! Meant to delete that.
Practice gratitude. Meister Eckhart said, “If the only prayer you ever say is “Thank you.” that will be enough.” When caregiving, my gratitude stemmed most often from things like a good cup of coffee, 10 minutes of quiet, and freshly laundered bed sheets. Oh, yeah, and a sense of humor that allowed me to laugh when life was at its most absurd.
Make a lunch or coffee date with a friend. Someplace close so you don’t feel stressed about stepping away from your caregiving load. One thing I realized is that each friend offered a different kind of support. Some were listeners, some were doers, and others were just great huggers.
Dig in the dirt. It’s ironic coming from me, the person who can kill a plastic plant. Seriously, though, even if you’re not a gardener, there‘s something satisfying about squishing your fingers in rich loamy soil, and repotting a droopy plant or growing a few herbs outside your kitchen door. My choice is always cactus, since they thrive on benign neglect.
Chop wood. Carry water. My interpretation of this Zen expression is that familiar tasks can actually be a comfort in the midst of all the “life changes on a dime” moments that caregiving can bring. The simple act of making mom’s meatloaf recipe for dinner, or helping your child with a homework lesson can ground you in the every day sacred. And yes, it goes without saying that some tasks are more sacred than others…
And finally, it’s ok to have a good cry. Studies show that crying can cleanse our minds as well as our bodies; releasing bottled up stress hormones that can cause all sorts of negative effects. Unfortunately, I didn’t do enough of that during the years spent caring for my parents. Instead, I drowned my sorrows in cheese and crackers. Trust me, crying is definitely better for your health and your waistline.
As caregivers, going the distance requires staying hydrated in all its forms. It keeps us from hitting the wall or at least from hitting it quite so hard. The rewards of being there for someone you love can be great, but let’s be honest – sometimes “surviving” is the real prize.
Whether it’s called self-compassion or self-kindness, the premise is the same: Treat yourself as kindly as you would treat others. This concept is especially important for family caregivers, who can get so caught up in daily tasks that they neglect themselves. To let this happen puts the caregiver at risk for exhaustion, a case of “the blues,” symptoms of depression, or medical diagnosis of depression.
You may be wondering how to cultivate self-kindness. What steps can you take? Can you stay on this path?
Self-kindness is related to self-esteem. Neel Burton, MD, cites 17 ways to develop self-esteem in his article, “Building Confidence and Self-Esteem,” posted on the Psychology Today website. A suggestion from Burton, “Do at least one thing that you enjoy every day, and remind yourself that you deserve it.”
Now in my 19th year of caregiving, I realize that self-kindness is a journey of its own. I know I must be kind to myself in order to care for my husband. Some self-kindness steps worked better than others. When I reviewed my caregiving experience I became aware of how I created my self-kindness path. These are the steps I took.
Learn about the benefits of self-kindness
Many articles on this topic are posted on the Internet. One benefit is the reduction of stress, something all family caregivers need. Being kind to yourself helps you feel good about yourself.
Promise to be kind to yourself
This pledge keeps you moving forward on the self-kindness path. When things get too busy, self-kindness may ebb, and you may need to jump-start it.
Make a list of your needs
A health and wellness author, I know quiet needs to bepart of every caregiving day.What do you need? You may wish to make a written list of these points.
Consider your wants
Maybe you’ve wanted to take up golf for some time, or want to see the latest movie. Thinks about your wants and make a list of them. These two lists, wants and needs, will help you balance your life.
Test self-kindness strategies
A step that sounds good may turn out to be not so good. If a strategy isn’t working for you, move on to something else. You are worthy of this effort.
Keep what works and discard what doesn’t
Because self-kindness is a trial and error process, identifying steps will take some time. As you explore self-kindness, however, you start to develop a routine. The goal is to make self-kindness a daily routine.
Be willing to change course
As life changes, your self-kindness steps may alsochange.Monitor your feelings and know which self-kindness steps work best. Don’t be afraid to try something new.
Finally, be persistent about self-kindness
Just as a schedule is part of each caregiving day, kindness needs to be part of your day. Self-kindness improves your life and your loved one’s life.
Amit Sood, MD, in his book, The Mayo Clinic Guide to Stress-Free Living, thinks the kindness we show others is fueled by the kindness we show ourselves. “Self-kindness helps knit your tribe together,” he continues. Don’t wait for self-kindness to find you. As Sood explains, “Waiting for others to send you positive energy will put you at the end of a very long line.”
Surprise yourself with a new self-kindness step today!
Caregivers and care receivers may be about the same age. This is especially true if a wife is caring for her husband, or a husband is caring for his wife. While the caregiver is tending to the needs of another, she or he may develop their own health problems.
You may have arthritis, or osteoporosis, or diabetes—chronic conditions that require monitoring and professional care. Before you know it, self-care and caregiving have become a balancing act.
My husband is six months older than I am (I married an older man), and I recently discovered that I have osteoporosis in my knees, in addition to two arthritic hips. When I get up in the morning I feel “creaky” and can hardly walk. An hour later, after I’ve taken an over-the-counter pain medication, walking becomes easier.
For many caregivers the question is “How can I retain a balance between my own needs and my loved one’s needs?” Since I don’t know anything about your caregiving tasks of setting, I can’t be specific. Still, you may find the following tips helpful. At least, they have worked for me.
See your primary care physician
In her book, Passages in Caregiving, Gail Sheehy writes,“Being a caregiver provides many excuses for skipping your necessary checkups, but don’t do it.”After I felt and heard a snap in myleft knee, I contacted my primary care physician. She referred me to a Certified Nurse Practitioner, who recommended an x-ray. The x-ray revealed the osteoporosis. If you don’t have a primary care physician, now may be the time to get one.
Keep medications current
Don’t take any medicine that is out of date. Renew prescriptions if necessary. My husband and I are on a “worry-free” medication renewal program, and the medications come by mail. Sometimes, however, I have to call the 800 phone number and ask for a prescription to be renewed. The prescription service contacts the physician who wrote the original prescription—a big help to me.
Learn more about your chronic condition
Osteoporosis is a good example for this point. It is basically weakened bone strength and the person with it is more at risk of breaking a bone. To learn more I subscribed to a Mayo Clinic bi-weekly newsletter about osteoporosis.
Be kind to yourself
Tell your loved one when you aren’t feeling well. Apologize for the delay if you think you need to, yet be reassuring. Remember, you have to be in good health to care for your loved one. Mike O’Connor details self-kindness in his article, “40 Ways to Practice Self-Kindness,” posted on the Kindness Blog. One point caught my attention: Act on what you needand not what you want. Instead, O’Connor says we need to remain strong, centered, and continue to move forward.
Caregiving is a journey and practicing self-kindness will make the journey easier for you and your loved one.
“For, indeed, in the social jungle of human existence there is no feeling of being alive without a sense of identity.”
As Erik Erikson has so rightly typified, knowing “who you are” and “what you are about” helps us make sense of our personhood. Identity helps us carve out a niche in society by defining how we think about ourselves and how we relate to others. The exploration of identity does not occur in a vacuum, and the influence of external factors and persons play an important role in our identity development. This is particularly salient for those young people who provide unpaid care, assistance, and support for their family members with health care needs.
In the blink of an eye, my older brother and I became two of the nearly seven million child and young adult caregivers in the United States. When I was eleven years old, my mother acquired a physical disability as a result of a spinal surgery gone horribly wrong. Only the year before, my mother had run a full marathon in Alaska, her body completely capable of pushing itself to the limit. After the surgery, she became a shadow of her former self. She was unable to bathe without assistance and could not lift her arms to feed herself without tremors of pain racking her entire body.
My brother, nineteen years old at the time, dropped out of college to begin caring for my mother and me. From that point forward, he made every decision carefully considering the possible ramifications for our family. Attending his college two hours away? No longer possible; he needed to be home to help our mother to the bathroom. Going out with his friends on the weekends? Not a chance; that money needed to be used to pay our mortgage. My brother lost the friendship of his peers, the earning potential dependent upon a college degree, and all of his free time. Caregiving wasn’t simply a part of his life; it defined him. Those precious young adulthood years most spend finding their identities were stolen from him. He’d say that he was uncertain of his identity, outside of being “caregiver”.
My life, too, changed forever. The constant worry over my mother’s health and our finances coupled with the tormenting fear of “what-if?” plagued my thoughts. I’d pray every night for God to take away my mother’s pain and give it to me instead. Every morning, I’d wake up, and when I found that I could freely move my limbs around, I’d realize my prayer went unanswered.
Besides the non-stop anxiety, our family’s experience left its mark on me in other ways. I knew what it was like to hide from your family that you were bullied on the first day of seventh grade (and every day thereafter) because you knew there was enough going on at home and didn’t want to add any more stress. I chose to keep quiet because my mother would fight for me. The last thing we needed was my mother hauling herself up to my school in a neck brace, threatening to sue anyone who laid a hand on her child. I learned to hide my emotions and say everything was fine and good, even if it wasn’t. I fault no one for this. My feelings are my own, and I take ownership for whatever I’ve chosen to share or not share over the years. I learned to tell people that I’m a private person and much better at listening to others’ problems than divulging my own.
I remember when I did decide to share what was going on in my life. During my junior year of college; a trusted friend had remarked, “Feylyn, you don’t seem like yourself lately.” I watched her eyes widen in shock as I told her that my family was about to lose our home and that my mother was currently lying in a hospital bed— no more than two football fields away from where we stood — with excruciating pain from back spasms. My sweet friend was overwhelmed, and so was I. She didn’t know what to say, and I didn’t either. I decided then that I wouldn’t say anything to my peers anymore. I’d choose more wisely next time. What kind of person did that make me? Quiet, introspective, and a good listener, certainly. Always available to hear the problems of others and respond empathetically. I enjoyed it and was good at it. I soon found that I could put those good qualities to use in my chosen career as a therapist.
My life experiences reinforced my listening skills, cultivated empathy, and put me on a career path that would allow me to use both on a daily basis. The reasons why I became a therapist are many, but I’d be lying to myself if I thought that caregiving played a trivial role. Indeed, my experience in navigating my identity in the midst of young adulthood may not come as a surprise. Research on identity development has shown that the question of identity for young adults may be answered through their navigation of education, career choices, and romantic partnerships. Furthermore, previous research in the United Kingdom has shown that the experience of providing care for a family member may be a determining factor in the education and career choices for some young adult caregivers. My ongoing qualitative research with young adult caregivers in the US has shown complementary initial findings; the young adult caregivers overwhelmingly report that their educational and career path are significantly influenced by their caregiving roles. Their family experiences may lead them to choose jobs and careers in which they can utilize the skills gained from caregiving, e.g., money management, organization, and a caring spirit. They may also choose careers that put them as far away from caregiving as possible; they may seek lives away from the caregiving duties that they have had forced upon them. Still, others may choose hobbies, seek volunteer activities, and form fashion and music preferences influenced by their caregiving experiences.
In addition to educational and career choices, my research seeks to understand the deeper, internal impacts upon identity development for young adult caregivers. The influence of caregiving upon a young adult’s identity is not inherently problematic. It does, however, beg consideration. I assert that it’s important to consider how young adult caregivers have navigated major life choices and the question of who they are. Were they the authors of their own lives? Did they feel free to pursue their dreams? Do they feel like they missed out on something, and did some options feel unavailable to them? What and who helped shape them into the persons they are today? By exploring these questions, we are left with a better understanding of the role caregiving plays in young adult lives in both adolescence and adulthood.
Feylyn Lewis is a PhD student in Social Work at the Institute of Applied Social Studies at the University of Birmingham in England. A native of Hendersonville, Tennessee and graduate of Vanderbilt University, she is a nationally certified mental health counselor. Her doctoral research focuses on the identity development of young adult caregivers living in the United Kingdom and United States. During Feylyn’s childhood, her older brother was a caregiver for her and their mother who has a physical disability. This experience motivated Feylyn to pursue research and advocacy work for young adult caregivers; thus, she came to England from the United States in 2013 to further study under the expertise of Professor Saul Becker, world-renowned researcher on young people with caring responsibilities. Feylyn’s research with young adult caregivers in the United States is currently ongoing, and she invites 18-25 year old caregivers to contact her if they are interested in participating in her research study. You may learn more about her research by watching the following video: https://youtu.be/Pcte_hA12LI
 Erikson, E. H. (1968). Identity: Youth and crisis. New York: Norton.
 Levine, C., Hunt, G. G., Halper, D., Hart, A. Y., Lautz, J., & Gould, D. A. (2005). Young adult caregivers: A first look at an unstudied population. American Journal of Public Health, 95(11).
 Hunt, G., Levine, C. & Naiditch, L. (2005). Young caregivers in the U.S.: Findings from a national survey. Bethesda, MD: National Alliance on Family Caregiving [in collaboration with the United Hospital Fund].
 Arnett, J. J. (2000). Emerging adulthood: A theory of development from the late teens through the twenties. American Psychologist, 55, 469-480.
 Becker, F. and Becker, S. (2008) Young adult carers in the UK: experiences, needs and services for carers aged 16-24. London: The Princess Royal Trust for Carers.
Compassion fatigue is a weariness of body and spirit, caused by the never-ending demands of caregiving. This form of burnout can come on quickly, and before you know it, you feel like you’ve hit the wall. You may even wonder if you can continue to be a caregiver. There are steps you can take to alleviate the symptoms of compassion fatigue. Your goal is to stop compassion fatigue before it stops you.
Assess the situation. Exhaustion may cloud your judgment and things may not be as bad as they seem. If you are unable to do this on your own, ask for help.
Consider your overall health. Do you have physical problems of your own, such as arthritis, or a sprained ankle? Illness can slow you down and change our outlook.
Check your support system. Family members and friends may have moved away, and although you feel alone, you can shore up your support system. This takes time, and is worth your time.
Determine if you’re down or depressed. There’s a huge difference between the two and you need to know the differences. You’ll find helpful articles on the Internet and other resources at the public library.
Talk to a trusted family member, friend, or colleague. One person can get you through a dark time. Venting your feelings makes you feel better, but don’t share too much at once. You don’t want to wear out the other person.
Each day, try to have one meaningful conversation. This conversation may be with a health professional, another family caregiver, certified counselor, or religious leader. Contact a friend that you haven’t seen in weeks.
Build “me time” into your days. A few minutes of doing something you enjoy, such as knitting, can boost your spirits. You may even wish to sign up for an adult education course.
Stay physically active. A short walk, 15 minutes in your neighborhood, can change your outlook. Your loved one may belong to a health club and the two of you may exercise together.
Take care of you. Don’t let others tell you how to do this. You’re the person who knows you best, and what makes you feel good.
Retain selected social contacts. Options include going out for coffee, attending a meeting, or having dinner with friends. A few minutes away from the demands of caregiving can save your day.
Monitor your self-talk. Once negative self-talk gets started, it’s hard to stop it, and will continue unless you take action. When a negative thought comes to mind, try to balance it with a positive one.
Affirm your caregiving with words. Writing affirmations about caregiving can change your attitude in surprising ways.Keep your affirmations short. One-sentence affirmations are easier to write and remember.
Alia Indrawan is an integrative healing practitioner and intuitive guide based in Bali, Indonesia. She has previously worked as a Hospice Nurse, helping people with terminal illness to die gracefully and in peace. She has taken the lessons she’s learned from death and dying and now empowers others to become conscious creators of their lives. She is deeply committed to whole-hearted living, where emotional freedom and vulnerability are honored and celebrated.
Alia integrates her background in traditional medicine with her passion for indigenous healing. Her spot-on intuition and grounded, compassionate nature open up a pathway for powerful self-discovery and a renewed sense of purpose. Alia has developed a client base spanning five continents, a testament to the limitless breadth of her spiritual and emotional guidance.
Those who work with the dying are familiar with patients seeing long deceased loved ones, angelic beings, even hearing music and comforting voices as the patient nears death. Deathbed phenomena have been documented in the days, weeks, and months before death since the 1500s. Often confused with hallucinations, deathbed phenomena can bring comfort to patients and caregivers if those involved know what they are experiencing. This talk will explain deathbed phenomena and present on-going research about the topic. Martha Atkins scares accounts from the dying and bedside witnesses.
Psychologist, writer and innovator, Geoff Warburton has spent the last 25 years studying love and loss. Geoff challenges conventional apathy about grief and loss by offering an approach that evokes curiosity, openness and compassion. His approach synthesises Eastern wisdom traditions, in-depth psychology and common sense. The emphasis of his message is towards thriving after loss — and not merely surviving. He presents a perspective that challenges Western thought by saying there is no ‘right’ way to grieve and advocating that grief can be ‘the ride of your life’. Working from both his personal and professional experiences of bereavement, he goes so far as to say that loss through bereavement can become an adventure to be had, rather than a problem to be solved.