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.
How do you go from world traveler to funeral counselor the span of one phone call? In her talk, Laura Prince explores the transformative power of grief , death, and her passion for changing the way we as a society approach death.
While studying Gerontology and working with elders who where close to their own death, she became inspired to celebrate life and live as passionately as possible. Later while working on the National Geographic Expedition ships, a tragic unexpected death in her close circle led her inadvertently into a career in the death care industry. To this day, it has been the most passionate time of her life. She is currently working on an organization called Good Mourning offering death education, holistic grief counseling, and funeral planning services. Laura stresses the importance of properly honoring the those who have died, as well as our resulting grief. By becoming closer to the reality of death, we can live more present, passionate lives.
Imagine how you feel on a roller coaster. You start of slowly and climb a steep incline until you reach the top and then quickly descend, screaming until you reach the bottom, and then you begin to climb slowly once again.
Repeating this pattern occurs in relationships, school, on the job and in caregiving.
Case in point:
When you begin to care for your loved one, you both adjust slowly to a new routine– until a crisis occurs and you feel yourself descending rapidly, “screaming” until the crisis abates. Then you slowly creep back up to a normal pattern once again.
Homeostasis is the scientific term for the ability to maintain a constant internal environment in response to environmental changes and it is a unifying principle of biology.
Each of you can recall some events that mirror a roller coaster in your life. From now on, when you are experiencing a crisis, remind yourself that things will resolve and mimic the pattern of homeostasis. It might not always look like we want it to but, no matter what, there will be a change, and you will return to a feeling of stability and a constant internal environment.
A professional flutist, Toshiro Mitsutomi, developed 3 tips to evoke dementia patients’ memory and their life successfully during his 40years career: 1)play close 2)play at the same eye level 3)looking in the eye while playing. He actually demonstrated it by performing his original composition in the TED audience.
Music saves health care – Musicians play the role of nurse through the practice of music.
Toshiro established the female orchestra “flumus” for the purpose of supporting female artists. He founded the Music Hope project which implements a variety of workshops that strengthen the ties of “music”, “body”, and “heart” through playing music, dancing, exercises, and breathing in order to provide health support and create a societal contribution for musicians and mainly for municipal facilities such as medical institutions, nursing homes, schools and educational institutions. They also perform concerts for all of the caregivers and nurses, and continue to support people with the infinite power of music.
This talk was given at a local TEDx event, produced independently of the TED Conferences. There is power in grieving intentionally and purposefully. Telling her own story of loss, Elaine Mansfield explains the use of ritual as a tool for empowerment for life’s most challenging times.
Elaine Mansfield is a writer and bereavement educator who has lived on land overlooking the Seneca Lake Valley since 1972. She leads bereavement groups and workshops, and writes for Hospicare and Palliative Care of Tompkins County. Her writing reflects her forty years as a student of Jungian psychology, mythology, meditation and nature. Until 2011, she was a nutrition and exercise counselor. Since her husband’s death in 2008, her work has focused on healing, finding meaning, and creating a new life after loss. Elaine’s book “Leaning into Love: A Spiritual Journey through Grief” was published by Larson Publications in October 2014. The poet Naomi Shihab Nye wrote, “This magnificent, profoundly moving book gives encouragement and solace to all.” Elaine writes a weekly blog about life’s adventures and lessons at elainemansfield.com/blog.
Loneliness is not the same thing as being alone. Even if we have a spouse or other family members nearby, there may be something missing—a lack of connection or communication. Maybe we feel like we’ll be a burden to others and want to spare them, or perhaps a decreased mobility has made us more isolated. We could also feel embarrassed because we are unable to do things we once could. Or maybe we’ve lost someone and are having a hard time recovering.
These feelings of social isolation and loneliness have a big impact on our physical and mental health. A Brigham Young University study found that loneliness was a stronger predictor of early death than alcoholism or smoking fifteen cigarettes a day, illustrating how our feelings can affect us physically, altering the way our body functions.
We make even make the situation worse by pushing away opportunities for social interaction. But by taking a chance on the unknown, we just might move beyond loneliness and into connectedness.
That’s why it’s important to take a proactive stance in the emotional area of our wellbeing, so that our lives can be fuller, happier, and safer. Just as we would care for our physical bodies to nurture them back to a healthful state, so too we should care for our hearts and minds.
Join a Group
Human beings are social creatures who need a community to thrive. You can find a community that’s right for you through clubs and organizations that share your interests and values. Some examples might include churches, health clubs, travel clubs, educational classes, and volunteer groups. Support groups may also be a great way to deal with loss while meeting people who understand what we’re going through.
The AARP Community, run by the well-known association AARP, is a free website where you can introduce yourself and connect to other people with similar interests, experiences, and needs.
Stitch is a website where older adults can meet each other for companionship, traveling, group activities, and even love! This website emphasizes safety and verifies each member’s age and identity.
Care for Someone (Two-Footed, or Four)
The routine of caring for a pet or another person can provide structure and meaning to our day. A commitment to care for another gives us a sense of purpose, and we realize we are needed and useful. Furthermore, these relationships deepen our sense of connection and companionship in the world around us.
Paws’ Seniors for Seniors is an adoption program that places cats and dogs (typically over seven years in age) with adults 60 and over. Adoption matchmakers help you choose an animal that fits your lifestyle and living situation.
Hobbies give us an opportunity to set goals and wake up each day excited for new challenges, which leads to long-term satisfaction and personal growth. Gardening, for example, is one hobby that offers exercise and a connection with nature. For those with minimal mobility, reading or listening to music are classic ways to explore the world from the comfort of an armchair.
edX.org is a website that offers online courses from top universities and educational organizations. Courses are available on a wide variety of subjects, including design, history, literature, and computer science.
Pandorais a website where you can listen to almost any song from an era you can think of. The free version is available, if you don’t mind listening to a few commercials.
Loneliness often begins when we lose our ability to get around freely. Try to think of someone in your life you can help you by giving you rides to places you would like to go, such as a family member, neighbor, or caregiver. Sometimes we can avoid asking favors of others, but let’s remember that most people feel good when they can be of assistance. Of course, public transportation or car services might be an option as well.
Eldercare Locator can help you find transportation resources in any U.S. community and it’s a free national service of the U.S. Administration on Aging (AoA).
Whether you take a daily walk around the neighborhood, visit an exercise facility, or join a group for active people, exercise can offer both physical and mental well-being. It releases chemicals in our bodies that lift our moods, help us process grief, and combat day-to-day stress. It really doesn’t matter how we stay active, as long as we do so at our own pace and abilities.
Technology has brought us to a very different day and age, where now, without being connected online in some capacity can leave us feeling more isolated than ever. However, your local library is a wonderful place to learn how to get online and get connected. If you have little mobility, a caregiver or a family member can help you get started.
Facebook is a free website that helps you connect with other people. You can view their photos, for instance, and send them messages. You control who sees the information you choose to post. Check out the Caregiver’s Guide to Facebook.
Skype is a free website where you can video conference with other people. Seeing your family and friends can be more intimate and satisfying than a phone call. All you need is an affordable web camera connected to your computer.
For close to 40 years, not-for-profit Road Scholar has made it possible for adults on limited incomes to experience its educational adventures through a generous financial aid program. In 2015, it expanded its financial assistance to individuals caring for an ill or disabled spouse or family member. In all, the organization has dedicated $250,000 in annual funds to make the enriching benefits of lifelong learning accessible to all older adults.
Road Scholar is actively seeking applicants for these new, $1,300 caregiver grants for caregivers to offset the cost of attending a U.S. based Road Scholar learning adventure. We are reaching out to caregiver support groups, senior citizen centers, adult day services groups and organizations like thecaregiverspace.org to get the word out. Interested applicants can visit www.roadscholar.org/caregiver to learn if they are eligible.
Reverend Geoffrey Kerslake, Episcopal Vicar of the Archdiocese of Ottawa, kindly shared this statement on caregiving:
Caring for a sick or suffering family member or friend is a tremendous act of love and service. The care provided is proof to the ailing person that they are loved and appreciated and that they do not suffer alone. The gift of being present to another person in their suffering is one of the noblest, most charitable acts we can do for someone. Jesus in the Gospel of St. Matthew speaks these words: “truly I tell you, just as you did it to one of the least of my brothers or sisters you did it to me.” (Mtt 25.40) Serving others in their suffering is a way we encounter and serve Jesus Christ himself.
But being a caregiver can be a very demanding service of love. Oftentimes one person becomes the primary or sole caregiver at a great personal cost. We need as a community to support those who are caring for ill and suffering family and friends. The local parish community can be a source of support and may be able to offer help for caregivers. Approaching the pastor to share the circumstances of the illness or chronic condition is a way to both spiritually connect with the parish community as well as to find support for the caregivers. Even if the support consists mostly of a listening ear, this is a great benefit to caregivers who often feel disconnected with little time or energy to reach out for support for themselves.
Some parishes have a pastoral care team which is able to do home or hospital visits in addition to the ministry of the parish priest. The great blessing of periodic Holy Communion is a tremendous source of encouragement, grace and strength accompanied by a personal visit with prayer.
Parishes may have also have scripture study or prayer groups where caregivers can spend a few moments encountering the Lord in reflection and prayer with others, thus also increasing social contact outside of the place of care. Caregivers needs to be recipients themselves of attentive listening and social support.
Some parishes also have bereavement groups to help caregivers cope with the loss of a loved one which can be especially difficult after much time spent together meeting the needs of those who required constant care. Sometimes caregivers can feel themselves adrift after the death of their loved one having spent so much time and love caring for someone else that their own needs were set aside. The support of a parish community can be very helpful.
Even when it is difficult to find a few moments away, we can always find a couple of minutes for a quick, heart felt conversation with God – which is what prayer is all about: spending time speaking and listening to God who loves us so much He sent his Son Jesus to walk our walk, suffer and die for our sins, and rise again so that we might have the possibility of eternal life.
In the Catholic tradition, we have prayers like the Our Father, Hail Mary and Glory Be, as well as devotions like the Rosary and Divine Mercy chaplet, that many find comforting and which require little effort to pray, which is especially important when caregivers are weary and are seeking strength and consolation. Many people own a Bible or a weekday Missal with the daily Readings or have access to a televised Mass or Christian TV networks like Salt and Light or EWTN. A few moments spent catching reading the Word of God or listening to a talk or special presentation can also be very encouraging.
The best spiritual support for caregivers is to put them in contact with their local parish where they can have a personal encounter with the pastor and fellow parishioners who can help them on their often difficult journey. Each person’s faith journey is unique and what nourishes some does not prove as helpful for others, hence the need for personal contact and attentive listening.
The term “new normal” is so common it’s become part of everyday conversation. You may have waited for a new normal to develop after you became a caregiver. But even with a daily routine, you may not feel like you have a new normal, and wonder why. What are the problems?
Routines can yield different results
After we moved into our wheelchair-friendly townhome my husband settled into a routine quickly. With intensive therapy my husband’s paralyzed legs started to improve. He learned to stand, to pivot on one foot, and to take steps with the aid of a walker. Therapists asked him to practice walking every day and he can walk the width of our home twice. Today he didn’t walk because he felt so weak. While a routine provides structure to caregiving, it may not be the same every day.
Adjusting to a new place takes time
We lived in our former home for more than 20 years and were used to three levels, a beautiful yard with wildlife, a garage with drop-down stairs and attic storage. As beautiful as our townhome is, we don’t have enough storage space, and always seem to be looking for things. I used to have a home office with a wall of book shelves and a large work counter. Now my “office” is a desk in a notch cut from the laundry room. Some days my husband and I feel like we’ve lived here for years. Other days we feel like we just moved in.
Adjusting to disability is a daunting challenge
When it comes to being a good sport, myhusband is a champion. He has adjusted to so much—three emergency operations, a spinal stroke that paralyzed his legs, the need for a colostomy, having the colostomy, and caring for it. This care involves new medical terms, equipment, and procedures. Neither of us feel colostomy care is our new normal; everything about the process is abnormal.
Chronic disease takes a toll
If your loved one has cancer, heart disease,diabetes, or another chronic disease, you know it takes a toll over time. With medication and specialized care, chronicdisease may stabilize for months or years. However, the word chronic implies that the disease will worsen. Since you can’t predict your loved one’s decline, or how long she or he will live, you can’t settle into a new normal.
Life may be drawing to a close
Several times, in the last two years, Ithought my husband would die, and had acute anticipatory grief. I recognized the feeling because I experienced it before, and written extensively about it. Unless you take steps to combat anticipatory grief, it will take over your life. Life is up in the air and you wonder if anything will be normal again.
Family caregiving is a challenging enough, without looking for a new normal. We may never achieve this goal and that’s okay. Caring for a loved one, and savoring each moment, is what’s important. Love is our normal and gives us strength and courage for the journey.
Religion is an important source of strength for many of our members, so we’re asking clergy from different religious traditions to share how their members mark the end of a life. Today we’re speaking to Tracee Dunblazier, a spiritual empath, shaman, educator, and spiritual counselor based in Los Angeles, California.
What does your faith teach about happens to people when their lives end?
My path believes in the eternal spirit. Every person, at the end of their lives begins a transition or ascent into spirit. No matter the cause of death, known or unknown, they begin an awareness of spiritual dimensions of energy. Based on how they are living those new spiritual dimensions can be positive and beautiful or conflicted and tumultuous. Every person is seeking to justify their life with peace.
As a spiritual counselor, how do you comfort the dying?
All people will comfort the dying with the degree of comfort they have with their own mortality and experience with death. As an empath and spiritualist, I have daily, continually, and deliberately addressed my own mortality by witnessing for others their own transitioning experience. The process of losing interest in the physical and opening their awareness to the emotional, astral, and spiritual dimensions. Where illusions, delusions, angels and other spiritual beings reside.
How do members of the community traditionally respond to the death of one of their members?
As spiritualists, often times, members of the community relate to death in a less emotional or detached way which can sometimes be hurtful or offensive to the close grievers of the loved one who has died. Of course this is not the intention but is quite common. They also support with prayer and deliverance.
Is there a service to memorialize the dead? What is it like?
Usually. A memorial party or celebration with a memorial altar being constructed with sacred items and a place that loved ones can place important or meaningful items. The memorial altar is usually kept for 30 days, sometimes more.
What rituals of mourning are there in your faith?
An altar dedicated to the transition sometimes months in advance as death is recognized as a transition from one form to another. Creating a sacred space to focus the energy of the person in transition and also to focus the grieving energy of the loved ones all into a place of acceptance and communication of the transition.
Is there a particular amount of time allocated for grieving?
No, it is accepted that everyone will grieve in their own way and that in some situations their is complicated grief as their isn’t any conscious understanding of the death and that there may still me living experiences that were left unresolved. The resolution of those experiences at some point will be a part of the grieving process.
What text or passage would you suggest to a member of your faith community who is grieving?
“We must learn to embrace death and other life transitions openly and without fear and to recognize that there is a spiritual and emotional process inherent in each change. Giving yourself and each other the time to create space and opportunity to celebrate each other during the final days of life, instead of in the fear, shock, or shadow of death itself. We can’t forget that for every ending there is a new beginning.” The Demon Slayer’s Handbook: A Practical Guide to Mastering Your Inner World byTracee Dunblazier
What words would you share to comfort members of our community who may be mourning?
Do everything that you can to embrace your grief and accept the loss of your loved one in the physical world so that you may open to their spirit and love from the spiritual world. Remember that there is no loss of love, ever. They are waiting for you to open to their new form of love and communication that is accessed because the heavy emotion of grief has prepared you.
Is there a tradition from your faith that might be comforting for people of other faiths?
Creating a memorial altar for the loved one and then working with it daily through prayer and conscious intention to grieve the loss, acknowledge what you miss and every other aspect of your grief, and then eventually to the new life you’d like to cultivate without the person. Keeping a daily transition journal will be helpful to complete old emotional and spiritual dynamics that you had with the person so that you can renew your heart for yourself first and eventually for them in the new way. Doing these things will allow for a streamlined grief process and cultivation of the understanding of what it actually means to be eternal.
Tracee Dunblazier, GC-C, CCDC, spiritual empath, shaman, educator, and spiritual counselor is based in Los Angeles, California. Tracee specializes in grief counseling, energy dynamics, intuitive counseling, Shamanic healing, past life regression, soul recovery, transition strategy, addiction transformation, and space clearings. In 2005, Tracee founded itztime.com to offer resources, education, and strategies for other practitioners as well as those just embarking on their spiritual path, and in 2012, Iamtoostrong.com, a site where people can tell their stories of overcoming and transformation.
As a multi-sensitive, Tracee blends information that she receives intuitively with different modalities to create a unique healing plan for every client. Every session is focused on freeing the client from their presenting issue to release, empower, and heal – no matter what the condition. Tracee’s compassionate, humorous, down-to-earth style supports and empowers clients as tender topics are addressed during the session.
Tracee’s been a guest on many prominent television and radio programs informing others about spirituality and sacred ritual practices. An accomplished author, Tracee’s published articles cover many subjects related to spirituality and her blog breaks down current events and daily energy dynamics that everyone experiences. Tracee holds workshops throughout the year as well as providing mentoring programs that teach spiritual development and energy dynamics to both the novice for self-healing and the professional practitioner.
Loneliness can cause or exacerbate high blood pressure, heart disease, diabetes and even Alzheimer’s
Have you ever felt alone? That no one understands you? That you have no one to turn to? Maybe caregiving has changed your relationships. Perhaps your children have moved far away. Maybe age or your partner’s health puts limits on your activity level, so you aren’t as social as you used to be.
The gap between what you desire from social relationships and what you actually receive from social relationships is loneliness. When it is long-lasting it can affect more than just your mental well-being. It can also impact your heart health.
You’re not alone in your loneliness
Loneliness affects 60 million Americans. In the age of Facebook and online connections, we are feeling more lonely than ever. It’s an epidemic sweeping our nation, and wreaking havoc on Americans’ health.
Studies have shown the following affects of loneliness:
Loneliness increases the risk of early death by 45% and the chance of developing dementia in later life by 64%.
Extreme loneliness can increase premature death in older adults by 14%.
Loneliness has twice the impact on early death than obesity.
Loneliness is a form of stress, causing an inflammatory response, which harms the blood vessels and heart.
Being lonely is extremely bad for your health
Why does loneliness have such a major impact on our health? It’s just a feeling, right? True, but this feeling is powerful enough to affect all the major systems of your body. If you’re lonely, you’re more likely to have depression, disrupted sleep, hardening of the arteries, increased blood pressure, impaired mental function, a diminished immune system, and a decrease in physical activity and an increase in obesity. It even impacts cancer — tumors can metastasize faster in lonely people.
What’s happening in your body that loneliness throws so many systems out of whack?
Loneliness –> Impaired immune system
One UCLA study revealed that a lonely person’s body lowers its defenses against invaders. How? The human immune system can only fight so many threats. It has to focus on either viral threats or bacterial invasions. To lonely people, the world is viewed as a threatening place. Their immune systems choose to focus on bacteria rather than viral threats. The result is a lessened ability to fight cancers and other illnesses.
Loneliness –> Stressed cardiovascular system
Loneliness is a form of stress. It increases levels of the stress hormone cortisol. This increases blood pressure. Loneliness causes the heart to work harder and potentially causes damage to the blood vessels.
Loneliness –> Poor sleep
Research shows that lonely people are less rested people. They wake often in the night. They spend less time in bed actually sleeping than others. By lessening the quality of sleep, loneliness steels away the physical and psychological restorative benefits of sleep.
Loneliness –> Heightened stress response
According to research, the brains of lonely people demonstrate different reactions to stress than others. A situation that would be mildly stressful for most, such as public speaking, causes the release of epinephrine. This response is similar in both lonely and non-lonely individuals. However, those who experience loneliness show greater nervous system activity, which results in the release of cortisol.
Lonely people experience this heightened activity throughout the day, rather than only during stressful moments. Their brains seem to constantly be on high alert for threats. The result is higher levels of cortisol, which causes more wear and tear on the cardiovascular system.
Will loneliness break your heart?
Most people experience loneliness on occasion. The danger is when it becomes chronic. If you are experiencing loneliness, it can affect your physical health in the areas previously mentioned. It is particularly damaging to your heart.
Studies have shown:
Loneliness increases blood pressure by the same amount that weight loss and exercise decrease it.
Both men and women aged 50 to 68 who score highest on measures of loneliness also have higher blood pressure.
Lonely people have blood pressure as much as 30 points higher than non-lonely people.
Heart disease is the leading cause of death in the U.S.
The answer, then, is yes, loneliness can break your heart. Loneliness creates and increases the risk of heart disease. It results in increased stress levels, high blood pressure, and overall damage and weakening of your heart.
What can you do to fight loneliness?
It is important to treat loneliness as seriously as we do other threats to our health, such as obesity, high blood pressure, diabetes and smoking. Seek ways to make changes and reduce the associated risks.
This is especially important because loneliness is often associated with additional problems. If you are middle-aged or older, loneliness is often accompanied by alcoholism, depression, and suicide.
What steps can you take to avoid the downward spiral of loneliness?
Develop social ties – This is difficult for those suffering from loneliness, but is key for good health. Studies have shown that a strong network of friends and family reduces the risk of heart disease. Researchers believe this is because those who are isolated are more likely to drink, smoke, and exercise less. They also lack the support of assistance with medications, healthy meal preparation, chores, and encouragement to exercise. Without these supports, the lonely simply become more lonely, and slip into more unhealthy habits that lead to heart risk.
Don’t isolate yourself – Maybe you have a lot of family and friends close by. They are doing all the supportive things we just covered. Maybe they even contact you often, but, you don’t respond. You find it easier to simply not return phone calls and avoid get-togethers. Stop it! Even if it’s hard, get out there. (Facebook doesn’t count.) Keeping yourself isolated will only worsen your loneliness, and lead to related health problems.
Stay busy – One way to “get out there” is to join a group of some kind. A book club, a sports team, a gardening group, a writer’s group – whatever interests you – there’s most likely a group nearby. This will keep your mind on things other than loneliness, and assist you in establishing the healthy social ties that will help with your loneliness. If you are over 50, check out the National Center for Creative Aging for a list of programs nationwide. Just getting out of the house can make a difference.
Embrace a project to help others – Volunteer opportunities, especially for older adults, abound. Helping others can be one of the very best ways to move beyond loneliness. Help a struggling school kid learn to read, volunteer as a woman’s shelter or participate in Meal on Wheels.
Connect with yourself – Often, loneliness is wrapped up with negative views of oneself. It may take a change in thinking patterns about yourself to get off the loneliness road. Retrain yourself to stop negative patterns of thinking, and learn to love yourself. This, in turn, will help you reach out to and love others.
Adopt a pet – Animals have been shown to decrease loneliness and increase happiness in their owners. A faithful loving dog or cat can offer great companionship that feels lacking in the lonely person’s life. The responsibility of taking care of a pet can also stimulate positive habits and feelings. It’s also fun.
Monitor your heart health – Because loneliness is linked to high blood pressure and risk for heart disease, it is good to monitor this area of your health. High blood pressure is a silent killer, so tracking your BP is a good idea for anyone over 40. If you are battling loneliness as well as age, it is even more important.
It’s also easy to do. A home blood pressure measurement device will allow you to track your changes in blood pressure. As you adjust your lifestyle habits, you will be able to see the change in BP numbers.
With an easy to use app, such as Hello Heart (iOS, Android), you will be able to efficiently track your results. It will be easy to see changes over time, or patterns for each day and week. This will help you see how your habits are affecting your health. It will also allow you to easily share your results with your doctor.
Hope for the lonely
By taking these steps, you can greatly decrease the risks raised by loneliness. You can protect your body and mind from the effects of this far-reaching condition. Loneliness does not have to win. You can make changes and monitor your health to be victorious in the battle with loneliness. Take one step today. Loneliness does not have to break your heart.
Religion is an important source of strength for many of our members, so we’re asking clergy from different religious traditions to share how their members look at disability. Rev. Dr. John Joseph Mastandrea of the Metropolitan United Church in Toronto, part of the United Church of Canada. He is a certified Labyrinth Facilitator, Stephen Leader, and Spiritual Director following in the footsteps of Ignatius Loyola and Teresa of Avila.
Are there any pieces you’d share with someone struggling with a disability or the strain of caregiving?
For someone struggling with a disability, I would share the story of Temple Grandin.
Temple Grandin, Ph.D., is one of the the most accomplished and well-known adults with autism in the world. Now her fascinating life, with all its challenges and successes, has been brought to the screen with the HBO full-length film “Temple Grandin”, starring Claire Danes, which won seven Emmy awards and a Golden Globe. The movie shows her life as a teenager and how she started her career.
For someone dealing with the strain of caregiving, I would let them know about Circles of Care. Circles of Care are where a team of people, usually family and friends, coordinate care support to offer relief for the primary caregiver. There can be 80 people taking shifts to provide 24/7 care for a friend. Locally, they’re offered by Trinity Home Hospice and Casey House. This Circle of Care is coordinated by the paid accountable staff person.
Are there any articles of faith or scripture that address disabilities?
Come to me, all you who are weary and burdened, and I will give you rest. Matthew 11:28,29
Have you done anything specifically to make your faith more inclusive for people with disabilities and their caregivers?
My attitude has transformed to that of authentic empathy. My good friend has a mother with Alzheimer’s. My friend is the primary caregiver and I have been a compassionate presence.
Does your religious group have any formal support systems for the families of people with disabilities or illnesses? What about informal traditions of support?
The Met Care team offers support through a program of intentional phone calling, visiting and letter writing. Our members also provide transportation and other assistance on an informal basis.
What would you like to share with caregivers who have struggled with their faith? What would you share with caregivers whose experience has deepened their faith?
It’s okay to struggle with your faith. There is permission to be angry with God. Thomas Merton was an atheist for years after the death of his, mother, father and brother. Later Thomas Merton became the greatest Christian Mystic of the 20th century. I recommend The Seven Storey Mountain.
I would ask caregivers whose experience has deepened their faith if they would share their story with others.
Recently, I served as an interfaith chaplain for the Panam and Parapanam games. It was a moving experience to get to know the Para-athletes. I’d like to share this letter from a Brazilian athlete:
Dear Parapanam Chaplains at the Multifaith Centre,
Thank you for taking the time to listen to my story as a parathlete from Brasil.
I had a tragic accident in my youth that paralized me from the neck down. Through years of rehabilitation and therapy I am able to use my upper torso.
I thought my life would be forever filled with limitations. Then the opportunity came for me to be a parathlete first in native brasil and later the doorway to international competitions were opened. My event is discuss and javelin, it is with deep gratitude that the invitation came to compete in the Parapanam games. Thank you for your prayers and steadfast leadership.
I may never win but have special gratitude for the opportunity to participate in the Toronto 2015 Parapanam games.
Luis Raffael Rodriques
What sources have helped you celebrate your faith in a way that’s inclusive and accessible? What guidance would you give to other faith leaders?
Some people think they don’t need to do anything to find closure. When you pack it up, grief turns into a volcano. Living emotion and attachment is important. Start by being a presence. No answers required, just compassionate, intentional presence.
Reverend Dr. John Joseph Mastandrea became minister of spiritual growth and pastoral care development at Metropolitan United in 2000. John Joseph cut his teeth in the Etobicoke area of Toronto and now resides in Cabbagetown, he is “connected with the urban landscape, with the internal and eternal song.”
He has Bachelor of Science in Chemistry, Master of Divinity, Master of Religious Education, Master of Arts and Ministry of Spirituality degrees, all from the University of Toronto. John Joseph completed his Doctorate from Chicago Theological Seminary, May 2009. Ordained in 1989, he is a certified Labyrinth Facilitator, Stephen Leader, and Spiritual Director following in the footsteps of Ignatius Loyola and Teresa of Avila. John Joseph believes in nurturing body, mind and spirit. Monday to Friday at the local gym, reading and meditating daily weaves three key components of life. Nurture for self to nurture for others.
John Joseph’s volunteer work for the church and community includes: Chairperson of the Toronto South East Presbytery Pastoral Relations Commission, membership in the Toronto Area Interfaith Council, Police Chaplin to 51 Division, Membership in the Toronto Rotary, Chair Person the Toronto Rotary Community Services Committee and Chair of the World Aids Concert Committee a benefit for Casey House. Volunteer ministry has included positions as chairperson of the Worship and Liturgy Committee of Toronto Conference for four years, chairperson of the Mission Committee of Toronto South Presbytery, chairperson of the Planning and Development Committee and co-chairperson of the Christian Development Committee in York Presbytery north of Toronto, chairperson of the AIDS Committee of York Region since 1998, and member of the Pastoral Care Committee of York Central Hospital in Richmond Hill. He represented Canada as a delegate to the World Council of Churches in Geneva, Switzerland, in February 1990.
John Joseph was awarded the Queen’s Diamond Jubilee Award in 2012 to celebrate the ongoing spirit of his community work in the surrounding neighborhood.
Today John Joseph seeks to meet people where they are and build the capacity for relations between people in a diverse spectrum of society.