The emails poured in by the dozen, day after day after day. They came from parents and children, from violin makers and doctors, from sisters, husbands, colleagues, teachers. Some were spare, just a line or two. Others went on for pages, full of emotion. I read them all, absorbing the stories of grief, loss, hope. All… (more…)
Like so many children, I’m simultaneously exactly like and nothing like my father.
One of the things that’s very different about us is that he’s very much a caricature of the absent minded professor while I have a life that’s planned weeks in advance in a color-coded calendar.
He’s also oddly impervious to worry, while I’m wearing circles into the rug with anxious pacing.
His girlfriend is a very good match for him, but maybe too good. They are both incredibly kind people whose feathers are impossible to ruffle and they probably can’t find their car keys. Or their car.
This really came out while they were taking care of my grandmother. They are three very smart people, but sometimes it wasn’t easy to tell which one of them had dementia.
My grandmother stubbornly insisted on managing her own medication, bills, and just about everything pretty much until the end. For once, I felt like that was probably a wise choice.
As my grandmother became more frail, I grew convinced that it was actually better that I was a plane ride away from them. The more dementia took her ability to care for herself, the more I worried. We hear plenty of stories about family members whose well-intentioned help was more trouble than it’s worth, and I’m pretty sure I was one of those annoying, meddling family members. My dad was just too nice to tell me to shut up and stop nagging.
It was all I could do to keep myself from texting them twenty times a day to make sure they had set up that follow up appointment, read this article, don’t forget to pay the taxes, update this paperwork, and close the windows upstairs because it was going to rain tonight.
Yes, I know my father is a successful adult. Who raised me just fine, even if he did sometimes put my sister’s kids to bed with their shoes on and did once feed us tuna straight from the can when mom wasn’t home. I did sort of suspect if my mom hadn’t been in the picture we’d have ended up being very polite, but might have our pants on backwards.
Which would lead to me texting my dad to make sure grandma’s pants weren’t on backwards.
But let’s be honest here: grandma didn’t know if her pants were on backwards. Can you even tell with elastic waistband pants? She’d be in the background insisting the steak they’d dutifully made for her was actually a salad. I was getting myself worked up over things that didn’t matter while they were doing their best to keep her weight up.
I wasn’t just bossing them around, I also wanted to help. The problem was, I couldn’t walk over to grandma’s desk to find the paperwork to make sure the bills had been paid, taxes filed, and deal with that denied claim from the insurance company. They would have to scan the paperwork so I could see it. Which was going to be more annoying then just doing it themselves. Plus, they weren’t worried about any of these things. I was the only one who thought these things were urgent matters.
When I was there in person, I could actually do some things that were actually helpful. Sometimes. Only most of the really helpful things I could do in their suburban town required me borrowing their car to run errands, which they would have to explain to me. I kept an eye on grandma. I straightened up the house. I did a bunch of chores they were completely oblivious to.
It still felt like when I used to “help” my dad as a little girl and would follow him around asking 1,000 questions an hour. In fact, it felt exactly like that. I wasn’t actually helping them at all.
While my grandmother would keep a wary eye on me, she trusted my father completely. The only way to calm her down was to reassure her that he would be back soon and take care of it.
She did not trust me. And for good reason. They were pros at maneuvering her around her victorian house. I was not. They understood her demands when they didn’t make any sense. They were far more patient than I am, which is how they calmly listened every time I gave them advice they did not want or need.
As much as the whole family jokes about my dad and his girlfriend being scatterbrained (and the stories we have to tell…) they are still the people I call when I need advice. My dad is the most reliable person I know, I just know he’ll be a little behind schedule.
Grandma died before I managed to get my backseat caregiving in check, but I suspect this is going to be a lifetime struggle for me.
I’ve always felt like an outsider.
Growing up in the suburbs I always stuck out. I didn’t fit in. I didn’t belong there. My parents always described me as the black sheep. When I was little, they tried to get me to play nice, wear dresses, do the things little girls are supposed to do. To their credit, they gave up pretty early on. They’ve always been as accepting as they’re capable of being. In high school when my friends were fighting with their parents, I was always close with mine.
There was no surprise when I announced I was moving to Brooklyn. I didn’t spend a lot of time talking about leaving the suburban conformity for the city, but I think we all assumed it was going to happen. It felt inevitable.
They insisted in helping me move up. They took me shopping for all the stuff I’d need for my first (room in an) apartment. When they come up to visit they don’t bat an eye at how weird my friends are. I’d finally found my place and they didn’t understand it, but they saw how happy I was.
When my dad was diagnosed with cancer, I didn’t really know what that meant. People talk about “cancer” as if it’s one thing. It’s really not. There are hundreds of types of cancers and it seems like some of them have nothing in common.
His type of Lymphoma isn’t necessarily terminal, but it’s serious.
I want to be there for him while he’s going through treatment, but that means going home to the suburban life I hated. Leaving my weird job, my weird friends, and my life behind.
I feel like I have to choose between my family or myself.
Featured image: Christian Mueller / Shutterstock.com
We asked the community if they’d modified their home in order to better accommodate the person they cared for.
The most common additions were:
- Shower bars
- Grip tape on stairs
- Bed rails
- Shower seat
- Stair lift
- Elevated toilet seat
- Video baby monitor
One item I found very useful, in addition to the items others have listed here, is our Honeywell wireless doorbell purchased from Lowes. We attached the doorbell to mom’s bedrail and the speaker is across the house on our bedroom nightstand in case she needs us during the night. I can also bring the speaker outside with me when doing yard work (250 ft range). – Mike
We have the same thing and it’s a life saver. – Genie
If your person is small like my husband, you may consider getting a kid size wheelchair. It fits through those smaller doorways. – Pierrette
A note to homeowners: ADA requirements for wheelchair ramps are rules for public establishments. You do not need a 1:12 ratio in a private home. Our wheelchair vendors have said 1:9 ratio was just fine. That is what we have for our house and it has been entirely satisfactory. – Lee
Not big things but little things. Hand rail in the tub. Shower seat. ADA toilets. Reaching grabbers in every room. Guard rail on the bed with a yoga strap to roll over. That bed rail is the one I used when I was little. It is metal and super strong. – Alicia
Removed all rugs, built handicap ramp, installed railings in bathrooms, bought a swivel shower chair for the tub/shower, removed the door into the master bath for ease of entering, have hospital bed and bedside commode for nighttime use, electric recliner for ease of use…monitors in the great room and bedroom. – Deb
We have chain locks- up high on all doors since my son is a “wander/runner” with asd. We also have all cabinet doors with magnet locks and I can’t decorate for the holidays. – Danielle
We have installed hand rails in my Mom’s bathroom and shower to keep her safe. Bedside rails in her room. We also modified appliances when she was able to use them (she is sight impaired). We are still trying to figure out what to do with our stairs. We have a 4×4 at the top of the stairs and when Mom hits it with her walker, she knows to go around. Most of the time. Sometimes she just keeps pushing and banging against the barrier and I’m afraid she will topple over. My biggest fear is that she will fall down the stairs. – Kathy
Haven’t had the money to do much. We have a walk in shower, but she wont’ use it. Taller toilets. I had handrails installed on both sides of the stairs. I also have a video baby monitor in my moms room so if she gets up, I can see and hear her. She isn’t too mobile, so she comes down in the morning, then stays down until she goes to bed. – Julie
My family installed rails and put in a safe shower with no slip bottom. I have alzheimer locks and door alarms. recently added a driveway alarm to the door which I like better as the alarm rings at my bed if someone crosses the door and goes out the sliding glass door. – Cindy
We added rails to the front and back porches. We installed a handle bar on the rear door. All rugs were removed as well as the floor transition panels between each room. Also installed bathroom bars. Other minor changes done as well. – Sharma
Custom windows with tempered glass and special locks for my autistic teen who kept breaking the glass. – Karen
A nice ramp and deck in the back of my house (front yard is too small for a straight ramp), new doorknobs (more like handles) on her bedroom door and the bathroom door, and I removed all my pretty rugs from my hardwood floors. (Tripping hazard). Other things I can’t think of now. – Angela
While she was still in the ICU I had her mom get in touch with my wife’s uncle to have railings installed up both sides of each set of stairs. Also because she was a flight risk I hung bells on the bedroom door so that I would awaken if she tried to escape at night. – Andrea
I added a stair glide stair lift to take Daddy up and down the steps. Also railing for the shower and a shower seat. It was a slide chair….1/2 out of bath and 1/2 in, He sat and lifted his good leg over tub and I then lifted the bad one. He scooted over. Worked well. Sooooo much change in life when being a caregiver. – Mary
The VA came in and did an assessment. They put in ramps, stair lifts, hand held shower nozzles, shower seats and grab bars! We were so grateful, because my father in law really benefitted from the modifications! – Sharon
We set up ramps, chair lift, tub rails, adult height counters in both kitchen and bath. Remodeled complete basement with wide doorways and easy two and three way lighting including switches with remotes for easy lighting. – Linda
Adding on an accessible bathroom was cheaper than remodeling our master bath (which had already been completely gutted and remodeled already.) Its an option worth considering. An additional bathroom almost always adds value to your home. – Libbi
Handicapped height toilets. A new bathroom for him; toilet, sink, and a shower with a bench, hand held option for showering, and no doors or curtain. There is a drain in the middle of the floor. Easy for me to shower him and I don’t have to lift him in and out of the tub anymore. Ramps for front and back doors so that he can be more independent and there’s less worry of him falling. Half in ground pool so we can get him in and out more easily and safely. No throw rugs; they’re a trip hazard. Wider doorways for when he needs his wheelchair, which is every night and morning when his orthotics are not on. We also bought him an adjustable bed to help with reflux disease. – Ginnie
Installed wheelchair ramps, converted basement bathroom walk in shower by expanding the room to a roll in shower room, add’d a Acorn stair lift , mounted a chain above bed for lifting & adjusting self, hand rail and Auqa bath lift seat for main floor bath that was replaced with a hydrotherapy jetted tub, 2 shower/potty chairs. 2 push behind wheelchairs ( 1 for main floor 1 for basement) 2 electric recliner chairs 1 for basement 1 for main floor. a single electric bed for main floor living room and a queen size electric bed for basement bedroom, monitors, and handicap van. – Brenda
Outside the home too. Lots of cement walkways wide enough for wheelchairs, raised beds, keeping plants near to discourage wheelchair in dirt/mud. – Kathleen
Presently under remodeling…..it’s getting on my nerves but it has to be done. Widen doors, ramps, new walk in shower, remove carpets and replace with laminate wood. – Delisha
We gutted the main floor and widened hall, doors, opened kitchen, 5′ turn around in master bath with raised toilet and roll in shower, ramp in side entrance, chair lift to basement, eliminated any raise at deck door, other doors out, van conversion, these were the major things. – Sue
Initially yes. But then the old house became very impractical even with modifications so we had to move altogether to a much more care friendly home. Life is easier and more comfortable now. – Frances
Moved in Dec to home with a more open floor plan & thought everything was good. In Jan we took out carpet in mom’s bedroom & installed tile. Removed bathtub, toilet, & vanity in her bath & make walk in shower, handicapped toilet, new vanity & grab bars everywhere. Approximately $15k we hadn’t planned to spend. – Danette
We had to be moved to a bungalow because my son has Huntingtons disease. It has a wet room. No other modifications. As apart from bubble wrapping the whole contents of our home this dreadful disease doesn’t really ‘do modifications’ just danger with no solutions 🙁 We get by on a wing n a prayer x – Shelli
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Few things rise to the level of the deep appreciation that I feel for my father and the impact he continues to have on my life. As a caregiver for a wife with extreme disabilities, I now recognize skills and behaviors learned from a man who didn’t journey down the road I travel, but nevertheless prepared me for it by modeling five specific behaviors.
- See beyond the symptoms. In his role as minister, I observed him engage individuals, couples, and families in all types of drama and trauma. Seeing past reactive behavior, he paid attention to the non-verbal cues, and directly addressed wounded hearts. As a caregiver for a woman in relentless pain, my wife’s body does not always get to take priority over her hurting heart. The moan of the body often muffles the cry of the heart, and it requires extra discernment to speak comfort to core hurts. Listening to that heart, however, requires a skill set not easily learned, but effectively modeled by my father.
- Lead by serving. Even after long days, my father often grabbed the vacuum cleaner, mop, or dishrag and help tidy things. He did not view the home as his castle, but rather a place to serve his family. Growing up with five siblings, we each had chores, but Dad led us all through his example. Although the surgery count for my wife has soared to nearly eighty, like most caregivers, I spend more time with laundry, cooking, and general housework than dealing with the medical community. Thanks to Dad, I learned to serve and to clean—long before becoming a caregiver.
- Treat others equally. Finding something in common with everyone he meets, Dad affirms the dignity of each person. This lesson helped me better understand people, as well as engage with America’s vast medical bureaucracy. During three decades of caregiving, I’ve needed the help of dozens of physicians, as well as nurses, techs. custodial staff members, and hospital managers of the twelve hospitals she’s visited. Dad taught me the common language of human dignity that inspires, motivates, and elevates people from all walks of life.
- Stay on Message. Whether due to his generation, or decades of ministry and military service, Dad seems to possess an amazing ability to stay on message. Knowing what he wants to say and accomplish, Dad navigates the quagmire of human drama with the deftness of a tightrope walker. As a caregiver, I daily face an onslaught of medical, emotional, financial, and other issues. If I allowed myself to travel down every rabbit hole—I’d get nothing accomplished. Thanks to Dad, I’ve learned to better keep the main thing—the main thing.
- Aggressively Love. My father passionately loves my mother, my siblings and myself, and our families. Showing deep interest in each of us, I remain amazed how one man can love and value so many. He demonstrates that value with astonishing service and sacrifice. My father exudes a joy in loving those who cannot currently, or may never, match his love. Yet it still flows from him. Dad’s love for others is a picture of God’s inexhaustible and unearned love for us. Daily putting myself between a vulnerable loved one and worse disaster, I’ve come to better understand that love.
No greater lesson for a caregiver exists than to learn to love those who may not be able to reciprocate.
The imprint (good or bad) of a father stretches into generations. That imprint contains the power to shape and direct long past the life of a father in often surprising ways.
It remains deeply satisfying for me to know that, however small at times, a reflection of my father is imparted to each wounded heart I encounter—including the most special of all to me: the heart belonging to my wife.
There are a hundred reasons why not to holiday abroad with David freezing and lurching as he does. An unwelcome stowaway, Parkinsons finds a way to show up wherever we travel. Guaranteed.
So he’s not reported INBBRIATED. Unfit to travel, a constant fear of mine I carry, I’ve slipped a yellow medi-alert bracelet around his wrist, and stuffed a card with his name and flight inside his shirt pocket.
I did lose him once. There one minute beside me at the gate, gone the next.
“He’s wearing a navy cap with a large D emblazoned on the front,” I explained wild eyed.
A security guy discovered him wandering, brought him back in the nick of time to board.
“Why do you do that to yourself? Are you nuts?” an acquaintance bugs me in an effort to put me off. It’s not a question.
“What are a few hiccups and couple of hair-raising scrapes compared to the plusses — the pleasure we get from our travels?” I counter. “No telephone to bug me, no set routine, nothing like getting away to lift my spirit and make me human again. Great break for both of us.”
Know it’s true.
I think back to the month in Mexico: David and I lazing in a hammock strung high in the bamboo forest canopy swinging eye level with wild green and red parrots; our pre dawn swims in velvet-black sea as the first rays of daylight skimmed the water’s surface. Least said the better about the inaccessible palapa accommodation we’d rented sight-unseen. Turned out it perched beside a disused Yelapa graveyard in the jungle…and that was just one holiday, one country.
My mind rambled to the Holy Man seated cross-legged beside the Ganges, the sacred ash he manifested for us to ingest. Next moment I saw David and me in Chile soaking in volcanic water piped directly into a sunken pool in our bedroom…then us treading on strewn gladioli blossoms carpeting the steps to a Guatemalan chapel… then there we were floating on a lake one early sunset to watch flocks of Scarlet Ibis flying home to roost in Trinidad and…and…
“Your husband needs your help,” the BA flight steward roused me midway across the Atlantic. “He’s stuck in the lavatory.”
Hobson’s choice in a case of EITHER/OR. Trapped. Poor David. Horribly humiliated, I found him with his pants around his ankles unable to hitch, zip and belt them up as well as being able to stand and open the door. Don’t want that happening again.
Lesson learned: David wears elastic-waisted jogging pants while crisscrossing the skies. Wears an extra layer of protective underwear too.
“What about the actual travel, dealing with airports and such?” nagging friend persists. “Surely that’s too hard?”
“David rides to and from the gates in a wheelchair cutting lines like royalty. The assistant pusher just zips through.” Annoyed I felt so defensive I didn’t bother telling her that we have TSA pre-check, Global Entry and the like. I feel like royalty too. Pre-boarding getting to sit buckled in our seats before the scrum hits the aisle.
“I say if you can sit at home for hours staring at the TV, then why not in a plane? What’s better than sitting tucked up in a reclining chair being attended to in the manner to which we wish, but were not born?” I snap at Miss kill-joy.
I don’t say its easy traveling with David disabled as he is, but neither of us are ready to be stay-at-homes. I’m grateful we can still pick up our bags and head out.
Yes, my care as caregiver, and David’s needs, remain the same…spooning food mouth-ward, counting pills, aiming and lifting limbs to arm and leg openings, moping urine spills etc., the grind of those twenty-four round the clock duties we Caregivers know only too well, will never, can never, change holiday, but using a trick or two we keep on rolling, rolling
I pull out my check-list.
1) Travel insurance: YES — don’t forget this tip to add to your list, if you are planning a trip, Caregivers. I discovered buying coverage at the same time as our tickets guaranteed acceptance–no questions asked. Confessing to pre-existing conditions, not required. But for that clause David might have waited months, a year even waiting to be cleared fit enough to fly home from France that year he was hospitalized for twenty days and so nearly died. Travel policy saved our butts. Paid a medical escort to deliver him to a New Mexico hospital bed.
2) Seat assignment 6a and 6d: good. Up front just behind Business Class. David should be able to walk that far safely on his own. And back out. Though once waiting to deplane, reaching into the overhead for his Carry-on bag, he teetered backwards taking down the line of passengers behind him like so many ninepins.
3) Wheelchair assistance: yup, all arranged. + have a wad of single, fives and tens stashed within easy access in a front pocket for handing out as tips. Often students, those wheelchair pusher guys are fun to talk to.
4) Pills counted and ready for fourteen days in their original pharmacy containers. Done. I used to decant David’s pills into smaller space saving containers. Big MISTAKE. Seeing is believing apparently. Doctors just won’t take my word for it. THEY have to verify which formula of medication, what dosage etc. for themselves.
I’m not one to fuss normally, but this upcoming trip to Puerto Vallarta has me nervous. Maybe I’m just old. Maybe the time has come for the vegetative slippers and fireside slumber. Perhaps I should have listened to the taxi man at Heathrow last summer. Been discouraged by the contracted thinking of that one friend.
“I must give advice Mummy, let Daddy stay at home,” the elderly Indian taxi driver from Delhi at London’s Heathrow shook his head watching me unclip David’s seatbelt, and manhandle him from the cab.
“You’re wrong,” I replied, “It’s kind of you to be so concerned but disabled as he is, my husband still gets pleasure from our travels.”
“Misery-guts,” I cursed.
Projection? The start of our holiday was not a good beginning.
An adverse reaction to one of his medications, travel anxiety, not sure of the trigger, but something turned my normally gentle David paranoid.
Convinced I was trying to deny him his medication, he grabbed the phial of pills determined to take a double dose. Cajoling, fury, even threatening to call 911–nothing persuaded him to relax his grip. It took two hours of what little night was left before I managed to trick him into giving them up. Sleep deprived and emotionally wacked out it was a miracle we made the pre-dawn flight.
David looked blank when I quizzed him next day. Had no inkling what I was talking about. How different our lives. His. Mine. I liken him as a kite flying aloft and free, and me as the controller who yanks the string struggling to keep him earthbound.
Memories of the suicidally, gawd-awful night at the airport hotel, and the bruise ringing my wrist from his fingers, fading, the warm lassitude of being on holiday is finally creeping over me. Sweaters and coats exchanged for shorts and shirts, and with sand between our toes, we flop recovering, massaged by the sound of the waves.
Question is, are two winter weeks at the beach worth the effort, worth the horrors it’s taken to get to Mexico, I ponder. Yes, so far, yes I say–two weeks at the ocean does justify the means. Mind you, this might be it–the very last time I travel with him alone. Sleep deprived, and emotionally floundering, I came this close to packing David back into the car and driving home before we’d even started. Perhaps I should have listened to the taxi man at Heathrow last summer. Been discouraged by the contracted thinking of that one friend.
“I must give advice Mummy, let Daddy stay at home,” the elderly Indian taxi driver from Delhi at London’s Heathrow shook his head watching me unclip David’s seatbelt, and manhandle him from the cab.
“You’re wrong,” I replied, “It’s kind of you to be so concerned but disabled as he is, my husband still gets great pleasure from our travels.”
“Misery-guts,” I cursed.
Here on the beach in Puerto Vallarta, I watch him. See David’s face upturned to the sun; David drinking in the blaze of color as the red orb dips into the sea; David floating on his back lifted by the waves; David plunging into the sea. Our skin tinged toast colored by the breeze off the sea, sitting on the sand together, David, our friend Jennifer from Colorado and me, a margarita in hand nibbling totopos and guacamole, Happy Hour is a happy hour indeed.
Each day a new day, I thank God for the gift of being alive.
Not the kind rain kids like to run in and lovers like to walk in, but the unkind rain that kids run from and lovers shun. The hard-driving cold rain no one wants to be out in.
They were out in it.
A mother and her young daughter, alone, at a bus stop, arms wrapped each other, heads bowed against the wind and the water going through them like they weren’t even there.
A car drove by.
‘That’s so sad,’ the passenger said, looking out at the mother and daughter.
The driver said nothing.
Two blocks up the road, the car pulled into a Walgreen’s parking lot. The driver got out, went inside and returned carrying two umbrellas, one of them a kid-size yellow umbrella. A few minutes after that, the car was parked on a side street next to the bus stop. The driver got out, walked through the driving rain to the mother and daughter, handed them each an umbrella, turned and walked back to the car. Other than a squeal of delight from the child not a sound was heard, not a word was spoken.
The passenger’s name was Empathy. The driver’s name was Compassion.
Compassion was a caregiver.
We talk a lot about the caregiver.
We talk about oxygen masks, oxygen tanks, oxygen tubes, suction aspirators, nebulizers, blood pressure kits, catheters, glucose meters, insulin pumps, lancing devices, and blister packs.
Day after day.
We talk about cleaning, wiping, dressing, undressing, transferring, lotions, meds, cooking, shopping, and doctors.
Day after day.
We talk about anger, fear, frustration, the feeling of hopelessness, inadequacy and sleeping with one eye and both ears open.
Night after night.
The thing we don’t talk about is the thing that drives them – the difference between empathy and compassion. Look it up – you’ll find something like this; While empathy refers more generally to our ability to take the perspective of and feel the emotions of another person, compassion is when those feelings and thoughts include the desire to help.
Compassion is the caregiver.
Compassion is the kid that cried when Bambi’s mother died. Compassion is the kid that couldn’t kill a bug on the sidewalk, the kid that adopted the runt of the litter. Compassion is the person that attracts people with a need, financial, physical, even just the need for a good listener.
Compassion is the caregiver.
Compassion is not weakness. It takes perseverance to get up every morning knowing the challenges of the day will likely be more demanding than those of the day before and still move toward them. It takes loyalty to stand by the person who has become someone you no longer recognize and worse, no longer recognizes you. It takes the heart and soul of someone who hears someone else cry out in pain, feels their pain and wants, more than anything, to rid the world of pain. And it takes the impossible strength to hold the hand of someone you love while they move from this world to the next.
Compassion is the caregiver.
The one carrying the yellow umbrella through the rain.
By: William McDonald, Author of Old Friends (Endless Love)
When I first became my mom’s caregiver, I thought that being a happy caregiver was is a bit of an oxymoron. To those who are thrown into caregiving, it often feels like a thankless job. And whether you’re caring for a loved one alone or with a team of family, it’s emotionally, financially and sometimes physically exhausting. You’re constantly pulled between wanting your own, normal life back and the guilt you feel from wanting your own, normal life back. Unless you’re some magical superhuman being, it’s difficult to find happiness when you’re burnt out and grieving. You’re human. It’s natural.
It’s taken years for me to realize that happiness as a caregiver won’t just fall into my lap. Becoming a happy caregiver is a process. It isn’t a given. It ebbs and flows. Sometimes it’s hard work to be happy. Since time travel hasn’t been invented yet, I can’t change my caregiving mistakes. What I CAN do is share what I’ve learned in the last few years to become a happier millennial caregiver.
#1. Self Care
It’s so, so true that you can’t pour from an empty cup. I would know. I went through the stress of becoming a new mom to twins and becoming my mother’s caregiver simultaneously. In the beginning, I tried to be super mom, super wife, super daughter. And guess what? I was miserable. I was experiencing caregiver burnout and it was very real. If you are unhappy with yourself, it doesn’t matter how many people tell you what an inspiration you are.
According to a 2015 report from the AARP and the National Alliance for Caregiving, there are an estimated 9.5 million millennial caregivers. That means that a little more than 11% of America’s millennials are caregivers — most of them caring for a parent or grandparent. And while that’s a lot of us, it also means that the large majority of millennials are lucky enough to not be in our shoes. Cut yourself some slack. This job is no joke.
Take care of yourself.
Go for a walk or hike outside. It’s amazing what some good ol’ vitamin D can do. Get a foot massage, indulgent in a pricey coffee, treat yourself to window shopping. Do something everyday that makes YOU happy. Put away your phone and just have a moment. You deserve it.
Along with taking time out for yourself, you need to physically take care of your body. Easier said than done, right? I’m no stranger to stress eating and sometimes you just need to indulge. But it’s amazing how much better I feel when I eat healthy and exercise. With every vitamin you pop, it’s also a small reminder that YOU are important and YOUR needs matter.
#2. Let Go of Guilt
As millennial caregivers, most of us are just hitting some of the major milestones of adulthood. We’re climbing our way up the career ladder, moving into our first homes, perhaps we’re getting married and having babies. When you suddenly find yourself caring for a declining parent or grandparent, it can be a jolt. It’s only natural to wish for the way things were. Don’t feel guilty for sometimes missing the way your life used to be.
On the other side, guilt also comes from not being able to be with your loved one enough. This person nurtured you and loves you and you feel guilty for not being able to mirror that same dedication and selflessness.
Even though it’s 100% the right move for my mom and our family, I still find myself hanging onto guilt from putting my mom in a memory care facility. I feel guilty when I drop her off. I feel guilt when she calls me in tears that she wants to move back to her old house. I have to remind myself that my mom was adamant when she was first diagnosed that she wanted me to live my life to the fullest and not be a caregiver. It’s important to remember that this isn’t what my mom hoped for either.
The point is, as millennial caregivers, you’re doing the best you can. We were dealt a tough hand. Life happens. Your life is happening now. Give yourself a break. Let go of the guilt.
#3. Realize that Friendships Evolve
When I first became my mom’s caregiver, I had a difficult time relating to my peers. I was in crisis mode and while my friends were worrying about weekend plans, I was worrying about getting my mom medicated and stable. At first, I secluded myself. I didn’t know how to act when I wasn’t my snarky, 20 something self. But that got lonely fast.
Friendships evolve. The friends who can’t hang, won’t. Your real friends will be there for you through the good and bad. Friendship isn’t about being happy all the time. See your friends. Lean on them. It’s okay to not feel “yourself”. Give them the credit they deserve.
#4. Get Support
Even if you feel alone in your caregiving, you aren’t. Support can come from family, friends, online or in-person support groups or even a babysitter so you can get some alone time. You may need time to vent. Don’t let it build up just because you don’t want to be known as a “Debbie Downer.” It’s sometimes hard to integrate your struggles into everyday conversations. I totally get it. I go to a therapist regularly so I can talk through it all.
Just because you are physically capable of juggling it all, doesn’t mean you should. It’s not healthy. Try to delegate tasks to other family members and ask advice. People want to help you. It’s your responsibility to tell them HOW.
#5. Accept Your Parents for Who They Are NOW
Sometimes I get so caught up mourning the loss of who my mother once was that I miss out on who my mom is now. Of course it’s natural to grieve, but you also need to accept this new person. This is especially difficult for degenerative diseases as, by nature, your loved one’s needs are constantly changing. You’re constantly needing to reevaluate who they are.
Although my mom has difficulty dressing herself, she also loves my kids fiercely. She may not know why she lives in a memory care facility, but she remembers tiny details of my childhood. Although we aren’t in an ideal situation, I’m a luckier person to have her in my life.
Caregivers come from all ages and walks of life. So many of our community members have been part-time, full-time, long-distance, and professional caregivers over the years.
But as Cathy put it so perfectly:
It isn’t a competition regarding when we started caregiving, every version of it is hard.
I asked our community members how old they were when they became a caregiver. Here’s what they had to say.
My mother has been sick all my life. I don’t remember a time in my life I wasn’t helping her with some sort of medical assistance. – Sara
If you consider cooking and cleaning and being emotionally supportive for people who have special needs, technically, 6, but officially 24 is when it was clearly an adult caring for individuals with disabilities. – Eric
I suppose it really began when I was about 5, my younger brother had cystic fibrosis and I was with him till his last breath when he was 15. When I was much older we had my grandma with Alzheimer’s live with us. Then I helped my mom care for my dad who passed away in 2008 with complications of COPD & CHF. Now a caregiver for our adult son age 25 because of a TBI. – Aria
I started helping at 6-7 years old. My father had cancer and we helped mom as much as we could. He was 49. I would pick him up the floor, he’d be so weak from cancer. – Nicole
I became a caregiver at 6 yrs old, started with my 4 yr old brother. I’m still a caregiver but for the mentally challenged now. – Doreen
I was born into it. – Connie
At birth. – Skyler
I was 12 when I started. I had to take care of my mentally ill mother plus my younger sister. I’ve taken care of both my grandparents, great-aunt, both adult sisters, neighbor lady, and now my dad with dementia. I’m tired. – Trudy
I helped take care of my great-grandmother when I was 13. When I was 14 I took care of my mother when she had a nerves breakdown. At 19 I became a Certified Home Health Aid and worked outside of the home. At 23 I gave up that job and moved in with my grandparents to help take care of them. I’m now 34 and still taking care of my elderly grandparents, my mother who has had another breakdown and cant really function on her own, and my father who has physical limitations and failing health. Over the years I have also cared for my uncle and his handicapped wife. I feel like i’m watching my entire family, everyone I care about, slowly slip away a little more each day. My brother died 13 years ago and my best friend died by suicide 3 years ago. My life has been dedicated to taking care of my family. I don’t really have a life out side of that. – Amanda
From 14-36 years old I helped my Mom (and Aunt also who lived with us). Now I help my Dad and I’m 48. – Rebecca
I would work as a babysitter at 14, doing caregiving. At 17 I started helping with my nana. – Cheyenne
My dad got sick with heart disease and related problems when I was 15 and I helped care for him in the 21 years before his death. I moved 150 miles from my hometown to live with my mom and care for her the last few years of her life, I was 54 then. I’m 59 now and I care for my sister. – Joy
My mother was diagnosed with Breast Cancer in 1976 when I was 11 and needed more and more care by 1980 long before cancer was a household word. She died in 1989 just after I graduated from nursing school. – Loretta
The neighbor hired me to take care of the mentally impaired son when I was 15. All my jobs, except for one, had some form of taking care of someone else. I’m 58 now. My husband has asked me to fight the urge to take care of other people and so we can enjoyed our retirement years finally taking care of each other. I still take care of people occasionally. – Madeleine
My grandmother was ill…it was summer…what else needs to be said??? – Gwen
I was 24 for my Mom. I helped with my grandma at 16. I’m now 47. I’m now chronically ill. We help each other with cooking. I do the laundry. We have someone do the yard work. I don’t know how long it will go on but I will do the job until the end. No way I will let her go to a home. – Alicia
I was 16 and still in high school. – Tracy
I became a caregiver at 17. Now I’m 34. – Rachelle
I took care of mental challenged children. They had been abused and their parents on drugs. – Jo
I started taking care of my mother at 18. I became a nurse when I was 27. – Lois
I was 18 when I became a caregiver for my grandfather. – Margie
I became a caregiver at 19, as soon as i left high school. I gave up lots including college to take up being a full time caregiver to my parents. Took care of my dad until his death in 2008 and still taking care of my mom. – Julia
I was 19 when I started as a health care aid. – Mara
I started at 19 years old. I’m 22 now. – Bri
I started at 19, as a professional caregiver. – Beth
I was 19 when I gave birth to a son with Lissencephaly. He is now 21 and needs 24/7 care. – Shaz
I became a caregiver at 19, right out of high school. Now 30 years later I’m still going. – Diane
I was 19. Now I have been doing it for about 20 years. – Kama
My dad had a massive stroke a few days after my birthday and my mom couldn’t stop working. I was enrolled in online college courses so I was able to be with him during the day. He eventually recovered well enough to be alone and take care of himself. At 25 I took care of him while he went through chemo and radiation at MD Anderson for almost two months. We live in Mississippi so I drove my parents out and stayed with them. Sadly, he passed away from it after a two year battle. Two years ago at 30 I moved back home to be my mom’s full-time caregiver after her early onset dementia began progressing and she didn’t need to be driving anymore. It’s now reached a level where I have to help her bathe and get dressed, but she knows enough that we are still able to have a good time. – Angela
I was 21, mom of a 16 month old and 5 month old when my 5 month old was shaken by his babysitter. They didn’t think he would make it, he did but he is fully dependent and at the cognitive level of a 6-9 month old though he is 14. – Tiffany
My Mom had a brain tumor in her brain stem. It was near a main artery so they had to leave some there, which grew back in 2006 and she had her 2nd brain surgery. From her surgeries she had a stroke during her surgery which left her paralyzed on the left side, short term memory was affected, vision was affected, speech. Lover her dearly and I still care for her and I am 48 now. – Michelle
I was a caregiver for my grandfather for about 2 years, assisting my grandmother, when I was in my early 20s. In 2008, when I was 50, my Dad was diagnosed with Alzheimer’s, so I moved in with parents to help my Mom with his care. We kept him at home until he passed in 2009. I continued to live with my Mom, and am still with her to this day. She is now 86 years old; I am 58. I have been her sole caregiver since 2009. She has numerous health issues, including difficult-to-control diabetes, COPD, acute and chronic CHF, HTN, diabetic neuropathy, PVD. I also work full-time from home as a medical transcriptionist. Yes, I am tired, but God will get me through it and help me continue to provide the best care possible. – Diane
I became a caregiver at 21, I think. It’s been so long that I forget. – Amanda
I was 21. I’m 57 now and still caregiving. – Michelle
I was 22 when my husband had a TBI. – Mel
I was in my 20s. I’m still going strong in my very late 50s. – Deborah
I became a caregiver at 23, I’m now 58. I have gone from one person to another all those years. – Debbie
At 23 I started in a nursing home. Now I’m taking care of my husband. – Shelly
Married less than 3 years, began caring for my husband’s mother (breast cancer – no doctors or medical care, per her religion). Also, her sister had Alzheimer’s. Then late 30s, caring for my own mother until her death from COPD. – Lynn
At 24 I took care of my mom for a year before she passed away. – Fatin
My first and only son was born with a brain injury during labor and delivery, due to medical negligence. He has cerebral palsy, cortical visual impairment and many struggles and delays. But he is my whole world. – Liz
Mid 20’s is when I started taking care of my mom. Almost 60 now, and still caregiving for others. I’m tired and ready to retire. Hopefully within the next year. – Penny
I became a caregiver at 25. I’m 41 now. – Shannon
I was 25 when I started caring for my mother with early onset Alzheimer’s. – Lindsey
I was 25 when my mom got a heart attack and, later on, a stroke. – Gloria
It was my 26 birthday when my husband had a stroke,that left him with no speech & paralyzed on right side. I’m still caring for him. The older you get the harder it seems. – Patti
I became a caregiver at 26, and I’m still a care giver for the disabled. – Terrie
I was 27. I have a 19 year old with Spina Bifida. – Jackie
At 28 I became a caregiver after my sister suffered a traumatic brain injury in a motor car collision. – Tracey
When my husband suffered a severe closed head injury from an accident. Took care of him for almost 39 years. Now I have to figure out the rest of my life. – Darnly
I became a caregiver at 29, when my son was born disabled. – Terri
I was a caregiver at 29 and again at 43. – Jennifer
At 30 I became my parent’s caregiver. – Kim
I will be starting my 26th year on May 27th. – John
I was 32 when I moved in with my 80 year old Grandma to help with her stroke recovery. It’s coming up on 2 years since I made one of the best decisions of my life… ❤️ She took 46 steps on her own today!!! There were so many unrelated health issues for over a year after her stroke, so rehab was put off for a long time. Praise God, she’s finally in good health again and is making wonderful, albeit slow, progress with recovery. – Cyndi
Mom was diagnosed with cancer 6 years ago. Took care of her for two years and then my father as he had health issues toward the end of mom’s life. I am still caring for dad but now on hospice care and in my home. – Rachelle
I was widowed suddenly at 29. I became a caregiver at 33 for my boyfriend with cancer. He had lymphoma and brain tumors. – Coral
At 33 I started working in a hospice house. – Karen
I was 34. It was the end of everything. The beginning of everything. – Charles
I was 35. It has been 5 years since my husband’s accident. – Stephanie
I was 35 when my mother had a sudden ruptured brain aneurysm. – Christina
I was 37. Momma had Alzheimer’s. – Mary
I was 38 when my mom got sick, well sicker. We had a drapery shop we had owned and operated for about 25 years at the time, I tried to juggle taking care of her and keeping our shop afloat, eventually I had to close the business because she needed 24/7 care. She already had cardiomyopathy, and had it for years. Then one day she thought she was having a heart attack. Brought her to the emergency room and found out she had pneumonia, congestive heart failure, and throat cancer. Her throat cancer was in stages 3 and 4, and they gave her about 6 months to live. She was a complicated case due to the cardiomyopathy and CHF. No chemo, radiation was our only option. That was May 2003. With aggressive radiation for five weeks, twice a day, five days a week, she lived another two and a half years. My dad who has Parkinson’s couldn’t take care of her on his own, she needed 24/7 care. I took care of her, now I take care of him. We do what we must for the people we love. – Stacie
My mom was on hospice with cancer when I was 38. Daddy became ill with CHF when I was 41 and my husband was diagnosed with MS six months later. I also have a son with autism who is 23. I’m now 55. – Laurie
My son had his TBI when he was 12. He’s 25 now. – Tina
My son was diagnosed with a brain tumor/cancer and I was age 40. He was 20. He passed away this past Jan. 2, 2017. Twenty five long years of his illness. We kept him at home til the very end. – Kathy
I was 41 and have been caring for my husband for 17 years now. He has brain injury and cannot walk, talk and he eats through a G-tube. – Juracy
Age 42 for my patients. One year with my boyfriend and thank goodness we had Hospice help. He has been gone for 6 month’s. I still miss him so very much. – Susanne
I was 42 when my mom had a stroke. – Robin
I was 44 when my partner suffered a TBI after an 18 wheel truck ran a red light at 9 am. She was on her way to work…that was in1995. – Lorraine
I became a caregiver at 45. I never saw it coming. – Louis
I was 45. My daughter was 12. It takes the two of us to handle it. – Kim
I was 46 years old when I started taking care of my 52 year old husband. – Cindy
I was 46 when I started being a caregiver. – Roberta
It was 47 for me. My husband survived 20 months. (Glioblastoma average survival is only 14 months). – Melanie
I became a caregiver at 47. My husband is sick. – Lorraine
I was 48 when my wife was diagnosed with Huntington’s Disease. – Claude
My father went into hospice care & my mother has dementia. My dad is actually doing very well, but really bad memory loss. My mother often thinks I am her cousin. – Cindy
I was a caregiver from 49 to 53 for my parents. I’m still doing at 55 for my disabled husband. – Julie
My husband died 4 months ago. He was diagnosed with a brain tumor 4 years ago. – Susan
I’ve been doing it full time since then. (4years). Part time 10+ years prior. – Angela
I was 53 when I cared for my Dad and then not again until I was 65 when my husband got Alzheimer’s. – Lynne
I became a caregiver at 54…I will be 64 next week. – Annette
I became a caregiver when my 57yr husband suffered a Dbl stroke that left him completely left side paralyzed and 33% upper right brain lobe death. It is going on 5 years now. – Brenda
I became a caregiver at 55, and I’m still doing it at 61. I retired from my job to take on this new role. – Paula
We took care of my mom after my dad died. We were all over 55. – Julie
It became full-time from 56-64. – Christine
My husband had a bad stroke almost eight years ago, three weeks after he retired. He had just turned sixty. You just never know what life has in store for you! – Karen
My Mother is now 97 and five years ago I was 57 when I started taking care of her, 24/7. – Beverly
When we said “in sickness and in health” we envisioned supporting each other through old age.
Even 64 seems pretty young these days. The world has changed since the Beatles were at the top of the charts. When did we expect to start feeling old? At 70-something? But then there’s that 96-year-old yoga instructor.
I didn’t imagine the “in sickness” would happen in our 20s.
We felt so responsible. We were checking off all the boxes for becoming adults. We unpacked all the housewares we got for our wedding into our new house and started cooking healthy meals, going out running together on the weekends, and opened up retirement accounts. We didn’t want our careers to be first, but we also wanted to climb the ladder. We talked about who would take how much leave once we had a baby, how we’d manage childcare and housework. We were planners, planning our life together.
And then one day he isn’t feeling well. Really not feeling well. So I took him to the ER, his head in my lap in the waiting room, figuring they’d send us home with some antibiotics. Instead, he was in a coma by the end of the day.
Too much was happening at once for me to even worry about anything. I was in shock.
He came out of the coma, thankfully, but not really. I guess no one comes out of a coma as if nothing had happened; they’re never the same.
He’s never going to be able to go back to the job he had, although it seems hopeful he’ll be able to go back to work eventually. It’s hard to understand that he has brain damage, since there was no accident, nothing happened. He seems like his old self, except when he doesn’t. It seems like he can manage something on his own, except then he can’t.
I don’t want to baby him and keep him from progressing and recovering. But it feels cruel to watch him struggle, flounder on his own.
It feels cruel that this has happened to us.
At night I ask myself how long I will have to do this. How long I can do this. The doctors say he’ll probably be fine on his own, be able to get some sort of job, but there’s no guarantee. Right now he is well enough to stay home alone while I’m back to work part time, except I never quite know what I’ll come home to. So far it’s just been…confusing…to see what trouble he’s gotten into. But I worry all day that he’ll hurt himself or burn the house down.
What if he’s like this forever? How will I take care of us both?
I try so hard to not be angry, to not lose patience with him. Because I’m never mad at him. He didn’t do this. I’m just angry. Angry that this is our life now, that this happened to us. But I know being angry won’t make things any easier.
Exhaustion. It can hit out of the blue. You think you’re doing well and handling everything, and you have a hopeful outlook. It’s not always physical exhaustion. It can be mental or emotional exhaustion. But, mental or emotional exhaustion definitely adds to the physical exhaustion. That’s where I am this week. I’m mentally exhausted. I’m tired of struggling all the time. I struggle with a busy schedule…work, managing a household, taking care of kids, being available to my husband for his dialysis or any other medical needs he has. I struggle with worry EVERY SINGLE MONTH on how I’m going to pay everything and still be able to buy a little extra, or do something fun, or be able to pay for something my kids need or want.
Home dialysis was supposed to make things easier for “us.” They told us the machine is the size of a suitcase, and we can take it anywhere, even on vacation. They didn’t tell us we would need to lug 5 large bags of fluid for each day of dialysis (25 bags for a week), saline IV bags, and a gazillion medical supplies with us. They told us you do dialysis more frequently, but for less time. We do dialysis 5 nights a week for 2 1/2 to 3 hours once he is actually hooked up and dialyzing. It doesn’t include set-up time and clean-up time. It ends up more like 5 hours a night. That’s a lot. They said he can do it on his own, but it turns out, he has to have someone here with him to help him hook up and unhook, or be here in case of an emergency. It’s not easier at all. It’s harder.
I’m so tired of worrying about money. I get the summers off, but I end up a stressed out wreck because I don’t get paid when I don’t work. I’ve been applying for other full time jobs that are year round, even though it will mean I will have to leave a job of 9 years that I love. I considered finding something part time that I could do during the school year to supplement my income, and pick up hours in the summer to maybe enjoy them without worrying. But, because of dialysis 5 nights a week, I don’t know how it’s possible to work part time during the school year, after work. There just isn’t enough time in the week.
I’m tired of saying no to things that are important to my kids because I can’t afford them or I don’t have the time or ability to be both at home, and out. People will say, “you don’t have to give them everything they ask for.” My answer to that is that they don’t ask for much, and when they do ask, it’s very important to them, or it’s a life event that they shouldn’t have to miss. I hate that there are times they have to miss out because I’m not available or can’t afford something. I hate struggling to figure out where the extra money is going to come from. I hate that I am the only one who worries about it. It really sucks to keep disappointing your child, when you know you are struggling yourself to accept all of this.
I’m tired of having to keep it all to myself because the person that I’ve always figured this stuff out with is sick. He’s sleepy, he’s medicated, his brain is often foggy. And there isn’t much he can do. He is exhausted, too. His body is failing him, he’s in constant pain, he’s sleep deprived, he’s forgetful. He doesn’t have a solution to any of this. I’m tired of handling it all alone. I have to always keep him and his illness in mind, otherwise I would be overcome by resentment and hopelessness. I keep him in mind because he has enough to worry about. He didn’t ask for this any more than I did. He has it worse. My exhaustion is nothing compared to his.
This exhaustion has come and gone many times in the last 9 years since he got sick. We always rally, we always make it through, we always survive. It’s a matter of plugging along and pushing through. We have no other choice.
Read more on Renee’s blog.
Moms of special needs kids come in all shapes, sizes and types. What kind of (super) mom are you?
Rabbi Rebecca Einstein Schorr blogs at This Messy Life.
This former career-driven mother of three became a reluctant stay-at-home-mom when her autistic son and his two adorable sidekicks needed more from her. Formerly known for her popular blog, Frume Sarah’s World, Rebecca Einstein Schorr has embraced the challenge of stepping off the rabbinic pulpit and into the kitchen – some say for the very first time. The transformation from a religious community leader to what her kids call a “house-mother” has been nothing short of life-altering.
Sometimes people don’t know the right thing to say. In fact, they put their foot in their mouths pretty often. But sometimes they say just the right thing and it makes a world of difference.
I asked our community:
- Was there a time someone said the wrong thing? What do you wish they’d said instead?
- What’s the most comforting thing someone’s said to you?
Since this is a collection with experiences from quite a few caregivers, I’ve edited their comments lightly so they fit into the format.
The WORST, absolute WORST, thing to say is “I know how you feel.” – Marj
“Don’t leave her alone!” – My mom has Alz and is nonverbal and no longer able to walk. When I take her out with me, people say things like this. It always feels like an accusation, as if I’m irresponsible or neglectful. If they were really concerned, they’d offer to watch her for me! – Lauren
“Get over it and stop looking for handouts” – A family member that has had no contact with us since he got ill said this to me. Asking for help with medications and food is not looking for handouts. We shouldn’t have to ask. I no longer speak to him, as I have no time for negative mean people in my life. – Maggie
To be honest, there isn’t much a person can say to alleviate the pain and internal turmoil of watching a loved one descend into dementia. What was least helpful to me were people repeating religious platitudes. [We all know what they are.] – Kat
My niece Megan never said “Let me know if you need help.” She just jumped in and helped by bringing over food. It’s very hard to ask for help, especially male caregivers. Megan knew that and became our Angel. – Paul
People are reluctant to believe me when I say tell them there’s no cure. Nothing. No drug. No nothing. People will ask “Is he better?” WHAT?@#$%^! Everyone wants a happy ending…can’t blame them really. – Melissa B
“Lauren, you have all that responsibility” – I found it comforting for someone to acknowledge the depth of my situation. – Lauren
“I’m making dinner and bringing it to you. What time do you get home?” – This is the most comforting thing I’ve heard in 12 years of caregiving! – Maggie
One friend – a guy, who happens to be a radiologist – upon hearing my husband’s diagnosis offered help with navigating the medical system “anytime, anywhere, just call.” I believed him, so that was about the most comforting thing anyone has said. – Melissa B
The things most helpful were not so much the kind words, or knowing that someone has us in their thoughts and prayers; but the ones that helped me deal with the realities of dementia and take the best care of my parent and myself. – Kat
I often refer people to an article in the Los Angeles Times called “How Not to Say the Wrong Thing.” Comfort in…..dump out. Simple concept. For person’s with a change in status, i.e., new diagnosis, referral to hospice, the phrase “I wish things were different,” is enough. – Marj
Not that long ago, I ran into someone who knew my mom when she was alive. It was at the grocery store. She said that I am doing a great job and that my dad is a lucky man because not many seniors have family members willing to step up like I have. It’s not an easy thing to do. I don’t get paid for what I do. My dad can be very difficult to get along with. But I promised my mom. More importantly, he is my dad. I am unable to look the other way. – Mimi
I feel like it has always validated my feelings when I hear “I have no idea how you are able to deal with ____.” It makes me uncomfortable, but it is also nice hearing that someone understands the volume and impact the situation could have on you. – Amanda
The best thing, I believe, anyone can say is, “It’s good to see you here” (now, at this time, this moment….) or “I’ve been thinking about you.” That’s nice to know.
Or “Tell me about this condition…” Wow! If more people or ANYONE did that, and really listened, that would be about THE MOST thoughtful thing one could say. – Melissa B
For the newly bereaved, I recommend, “I’m so sorry. YOU were the BEST caregiver your (whoever) could have ever wished for.” – Marj
When I lost my wife, hearing the words “She’s in a better place now” did not help. Keep it simple with the compassionate words, “I’m so sorry for your loss.” Followed by, “I’m here for you if you need me.” Then just listen, and let the griever drive the conversation. – Bob Harrison
Words of wisdom
I think what makes the words so tough is that there are no words. Pain as such is an emotional experience and trying to encapsulate those feelings in words seems impossible. But the language of kindness speaks volumes! It’s the gestures and thoughtful acts during difficult times, even when small, that speak truth to a universe that is perhaps good after all. Shining a light, even in the darkest of days… – Ashley Look
We asked our community members what the best source of caregiver support they’ve found is. While we could all use more support, here’s what’s helpful.
I am the lone wolf taking care of her now. I feel just left to completely be in a silent world.can’t get out with the way things are being the sole caregiver so Facebook is a godsend. It sure gets lonely. – Renee
Facebook pages aren’t the same as human connection, but you might find some understanding on other caregiving pages. There are some that are private, and most I have found are under the sandwich generation title. – Chelly
A group on Facebook filled with like-minded couples all dealing with spinal cord injuries. It’s called Love Like This Life. Wonderful group. – Erin
I have found great support though 2 fb groups for SCI caregivers and spouses and another for FTT. – Kirsten
You can connect with other caregivers in our private Facebook groups.
Volunteer caregiving organizations
The Alzheimer’s Support Groups has a 24/7 helpline 800-272-3900. There may be Faith in Action or National Volunteer Caregiving Network respite programs in your area. – Helen
Home Health Care Agency…but I miss so much time from work when the nurses choose not to show or cant show. I dont have family or friends to help. My daughter or my other son they help here and there when I get to a point where I HAVE to have some time for myself. Surprised I still have a job. – Rhonda
Personal support. Just having someone to talk to, who can say with all understanding, “I get it. It’s hard, I know, but you will get through it” because they have been there. Having someone who can provide real, honest empathy instead of empty platitudes. – Debbie
You can always connect with other caregivers here as part of our community.
Our Hospice Nurse and Aids. My Aunties, Cousins and friends who share funnies with me on Facebook because they know I can’t get out too much. – Carla
Palliative care then hospice for my parents. – Deb
Hospice was a life saver. Their employees and volunteers1 – Julie
Family & friends
My husband has been helping me take care of my mom in our home for over 13 years. I recently completed my Master’s Degree and could not have juggled caregiving, work and school without his support. He is an amazing husband and the best son-in-law ever. – Kathy
My husband. We’ve been married 3.5 years. He is God’s blessing to me. – Jeannine
Right now my younger brother. He just recently took over so I could have a ‘me’ day in town. – Mary
My sole support for caring for my adult son with muscular dystrophy is my younger son and a couple friends. – Erika
Support is limited
We were caregivers for over twenty years and over time friends, family and others drifted away and we were left on a island with our loved one and each time we reached out for help from Agencies the door was slammed shut or we were told they could provide someone for two hours one time a month. Caregiver support is really a myth. – Jean
You can see all of the responses here.
Moan, moan, moan. YOU’RE NOT ALONE, friends soothe. It doesn’t help, you know — telling me. I know friends mean well offering pop-in help and I am grateful, truly, but fact is David and I are adrift alone in a sea of day to day survival.
Try a caregiver’s life for twenty-four hours and then tell me. Try coping on three or four hours sleep. “Go to bed earlier.” I imagine you advising. But that’s impossible don’t you see. I can’t till David’s safely tucked up.
“Ready? Ready YET David? Teeth? Clothes off? Slippers? Washed? Please hurry, I’m dropping.”
Familiar isn’t it Caregivers, functioning asleep on our feet?
My sleep cycle now broken by activity, I lie in bed for hours counting….sheep? — forget those wooly bundles jumping gates — tomorrow’s to-dos are what I’m counting. I try stars next, get caught up wandering the universe, and following moving lights across the heavens — could one be a UFO?
One A.M. “Blast,” I swear, “it’s now nearly two.” I’m clock-watching.
Sleep aids? No luck with teas or pills. CBD, high-free cannabis oil? Tomorrow I must sign on and get some. I imagine driving the twisting road to Colorado…snooze deeply. Morning comes two seconds after my eyelids close it seems.
“What time is it?” David asks mid dream before first light, before I’m ready to be a giver of care.
“Too early, David.” I roll away. Remembering he needs me, I roll back to see David standing by my pillow. A pair of scissors dangles in his hand. Chore number one of the day: snip off wet security underwear. Change him into dry ones.
“Too early David,” I growl after I’ve made him comfortable. “Go back to bed.”
Within a second snoring rattles from his room. “Lucky bugger,” I fume. Try reading. Try sips of hot tea. Give up. Get up.
“Terrible night. Just couldn’t fall asleep,” I glower over breakfast. “Watch out I’ll be a crabby bitch all day.”
Complaining won’t change a thing I realize. I’m venting that’s all. And I know my life isn’t ALL toil and grind and we still have heaps of fun. Take today’s swim class peddling our exercise noodles. Legs pumping, arms waving, laughing, being silly, David and I narrowly missing one another — circus performers on unicycles. Take the lecture we attended, the film that held us spellbound, or the birthday party of a friend — the warm snuggle we share if I’ve hopped into his bed. Bed, now there’s a word to make me grateful.
BED. I’m pulled back to the night drive through Mumbai from the airport over a dozen years ago. Rows of crates line the pavement. Four-tiered accommodation for the homeless: on top of the crate, inside the crate, a sheet of cardboard on the sidewalk, then the least desirable and by far the worst — children even — curled on the hard pavement, legs sticking into the traffic. Yes, life could be WORSE. David and I have no idea how much worse… Parkinsons or no, with more blessings than fingers to count them, we are so very lucky. Today David surprised me — got almost dressed without my help. Small achievement, you may judge, but I saw it as a gift.
Our home’s paid for, we have each other, and a mountain view whose white peaks sing the horizon. We have enough money to choose what and when we want to eat, what clothes to wear, and what to do with our time — luxury enough to balance the Parkinsons horribles. If a handful of earth and sky hold no emptiness as Hafiz declares, I have more riches than I can count.
“What’s more,” I scold myself. “I have the freedom of choice,”
Location, job, socio-economic status, life has swung me up, down and turned direction often. Making the switch from speech therapy to sculpture, sculpture to writing came easy. Working in a calm office with music playing, beat pounding heavy bags of clay. Giving up time to devote to David’s care — not so easy. Words, thoughts pile heaped unwritten in my mind. The computer keys stand lifeless, beckon me to sneak away and get tapping. But hey…
After all what’s more important — my beloved husband’s wellbeing or chasing some elusive fame by finishing my book about Spain, or the sequel to POET UNDER A SOLDIER’S HAT (the book I wrote illustrating one hundred years of Colonial rule in India through the personal stories of one family — mine as it happens.) The answer:
David. No question. He, me, us, our karma together — we’re what matters.
Parkinsons, my caregiver role, life’s circumstance — are what has been dished to us this lifetime round.
“Better get used to it baby, this is what’s is,” I counsel myself.
Nice concept. No quite so easy to carry out. I am still struggling deciding what part of me to chop. Forget should. Forget duty. Forget if only…
“This is the life you’ve been given by God. Live it fully.” Reads one of two quotes I keep on my puja. The second reads, “Whatever you do let it come from a place of love.”
I stand back up, my direction clear. Shared joys. Simple pleasures — those I’ll dwell on. Mini hikes, desert drives and bird watching from our living room. Yes, I have to pack and load David’s heavy walker into the car for expeditions. Yes, I have to help him on with his shoes, coat, scarf and hat. Remember pills, drinking water, sunglasses and hiking poles, but oh the exhilaration of getting out freed from our grotty world of daily coffee spills and trampled macaroni beneath his chair, to walk a leaf-strewn mountain path of brilliant yellow. One example.
“Let’s drive to Aspen Meadows,” David suggested last fall.
“How beautiful was that?” we sighed back home.
Life lessons are all about me when I’m tuned to reach for my rose-tinted specs — see things differently. Even surveillance cameras, would you believe?
Picture seven people, age range five to seventy-five. Returning home by car after a glorious week on the Mediterranean. We’d just turned onto the Grenoble autoroute from Voiron when the engine died. Panic — we’ll all be killed. No way could David jump the fence to avoid the frantic shoal of speeding holiday traffic. Pulling on the obligatory green breakdown jackets and setting warning triangles back and front, our son and daughter-in-law flapped orange jackets fearful we’d all be mown down. Before we could phone for help an orange rescue vehicle trundled into view, behind it a tow-truck. A surveillance camera spotting the breakdown automatically dispatched a rescue crew — hoisted us away.
“A welcome intrusion,” I now describe those big brother eyes — those invasive spies I’d so derided.
No special dinner, no dozen red roses, February the fourteenth, David opened his card. “Will you be my Valentine?” the words read.
“Yes,” he said. “Will you be mine?”
“Yes,” I answered.
It has taken me almost 10 years to figure out that I actually have a reset button and that I’m allowed to hit it when needed! My husband has a C4/C5 spinal cord injury and as his primary caregiver for going on 10 years, along with caring physically (alone) for our almost 10 year old, I’ve hit my limit often.
However, every time I did, I pulled myself back from the brink only a little thinking it was all I needed and all I could allow myself at that time. I mean, how do you, as a caregiver, allow yourself respite time when your husband cannot take care of himself AT ALL and when your young child needs you desperately? So really, I didn’t allow myself time and mentally wasn’t in a place where I could allow it to happen. Everyone told me to take time and everyone told me I needed it and deserved it but until I believed it, it wouldn’t happen.
So hitting the reset button didn’t actually happen until I understood and accepted that I needed to do it and needed to allow myself to do it. Sure, my husband told me to take the time but again, until I (me, myself and I) allowed it to happen, it wasn’t going to happen. So now, when I know when I get close to the breaking point (I get short and angry and mean with my family), I need to totally step away from the situation.
Sometimes, the reset is a nap. Sometimes it’s a car ride around the block. Sometimes it’s a walk down the driveway. Sometimes it’s a night away if all works out as planned! But most times, it’s 15 minutes alone in my room doing deep breathing and stretching. I’d say yoga but it’s really just stretching… I sit cross legged on my dog’s bed and lean as far forward as possible and stretch my back out and breathe… I used the Headspace App to meditate for a few weeks and now, when I need the time, I can sit in my room, stretch and breathe and do a 5 minute faux-meditation.
That’s usually how I reset since while I’d love respite care, I know that I will never, ever be okay with doing that knowing my husband and my daughter need me. So if the time I have to take for myself is only a few minutes, that’s okay since I know I can calm myself down and relax and then get back in the game.
I want to do this.
I don’t want to do this.
I love doing this.
I hate doing this.
I can do this.
I can’t do this anymore.
Or no choice.
You will be frightened.
You will be alone.
You will have doubt
And you will want out.
But only you will ever know.
And only you will ever know the moments that make it all worthwhile.
I am my 85-year old father’s 64-year old caregiver. He is bedridden now and rarely speaks. His eyes do his talking for him. His eyes speak of how tired he is. He holds my hand and teaches me to be quiet and just be there. Do I talk too much Daddy? Barely a smile while nodding his head, “yes”. I laugh and try to be quiet. Our time together is growing shorter and there’s so much I want to say.
But we just hold hands.
One time he said, almost shyly, “You’re a good girl”. I stood there, suddenly 5 years old again, grinning like an idiot through my tears.
What will I remember of this last leg of his journey? All the pain and morphine? His silence? The way he reaches for my hand? I will remember all of it and treasure every moment.
For now, we just hold hands.
Nearly all of the people I’ve cared for, in the last part of their lives it turns out, the care was mine, but the giving was theirs.
It was not my gift to them, but their gift to me. It was pure grace.
Grace, that Don allowed me to read to him, even though he didn’t need, or maybe even want me to. He knew how much it meant to me to do it.
My mother watched in quiet acceptance and love as I tried everything in my power to give her comfort and attempted to lessen her pain.
My father knew as his strength ebbed, mine had to grow.
Each of them gave far more to me than I ever gave to them.
My husband was diagnosed with early stage dementia in June 2015. My heart was broken. A month later our son, Steven, died. How can a heart break twice?
My husband and I cared for each other but we were arguing more and more.
I wanted out.
But I could not dessert him. I could not put the responsibility for his care on our daughter. These circumstances have brought us closer. Our shared memories have brought us closer. We have found love again.
We live one day at a time, not thinking about the future because we have no idea if there will even be a future. Today we hugged and made a list of things that need doing so he would not forget. Then we hugged again.
It felt good.
In the autumn of 2006, my beloved husband was diagnosed with Primary Progressive Aphasia, a form of dementia. I’d noticed that this witty, funny, intelligent (two Masters degrees) man was beginning to struggle with, of all things, language. I had no idea then that nine years later he would not be able to communicate via language at all.
But the language of love and touch never left him.
On the evening before he died, a baby goat was given to him to hold – one that had had her forelegs injured during birth. He stroked and comforted her as he would have any living being. That is the moment I carry with me.
The language of love and touch never left him.
Or no choice.
You will be frightened.
You will be alone.
You will have doubt
And you will want out.
But only you will ever know
And only you will ever know the moments that make every moment worthwhile.
If you are a caregiver with a moment to share, send it to email@example.com. I will happily share it in Part 2 of this blog.
By: William McDonald, author, Old Friends (Endless Love)
Available at: amazon.com
I know I’m not supposed to feel guilty, but I do.
When we were told that the baby I’m carrying would have severe disabilities, we knew abortion was an option but didn’t seriously consider it. This was our baby, no matter what.
But that choice won’t just affect my husband and I. It will also affect our daughter.
Our decision to keep this baby, to support in every way we possibly can, and love it forever means that our first daughter will never have the childhood we envisioned for her.
I feel like we’re stealing her childhood from her.
The internet is full of beautiful stories of the siblings of people with disabilities. I’ve been reading them when I can’t sleep, which is a lot lately. I find solace in them.
But I know our daughter, my husband, and I will have to make sacrifices. My husband and I made that choice together. Our daughter will have to live with our decision.
I hope one day she’ll be happy to take on that responsibility when we’re no longer able to.
I walked in the door at 7:30 tonight after being out since 8:15 this morning. My day consisted of working with kindergarteners for 7 hours, picking my daughter up from track practice, driving 40 minutes to her voice lesson and 40 minutes home, and a stop for Chinese food. I blew off a meeting because I had to get home at a decent hour to help my husband, and I was tired. Like almost every night, I was greeted by dishes in the sink, dirty floors, dusty pet hair covered surfaces, laundry piled on the couch, laundry in the bathroom, laundry in the laundry room. Did I mention there was laundry? The bathroom is a mess, even though I clean it at least once, if not twice, a week. There is also the usual clutter of a lived-in household.
I blew off cooking dinner tonight because if I had to make a meal, we would have been eating at 9 p.m. Did I mention I was tired? So, take-out it was. Again. I was out of the house and on the go for almost 12 hours today and had no desire to cook. As I sat and ate my Chinese food, I looked around and started criticizing myself for my obvious incompetence in running a household. What kind of wife and mother lets her home look like this? How dare I have this amount of laundry all over? How dare I allow my floors to look like crap all the time? It’s incredibly embarrassing every single time someone walks into our home. I wonder what they must think of me. I don’t like it when people come over. They probably think I’m lazy. There is no excuse to not keep up with it all. Even though I try to clean it every week, it never looks the way I like it, let alone the way guests would expect to see it. It looks good for a day at most, and then it’s a mess again. I don’t have time to make it look incredible, or even presentable most of the time.
I look forward to weekends, but then I spend them grocery shopping, cleaning what I can, driving kids around, and hopefully catching up on some of the sleep I inevitably missed during the week. It’s a rare weekend that I get to do something just for the fun of it. Sitting and reading a book can be a challenge. I figure I don’t deserve it anyway, because I can’t even get my simple chores done.
I’ve also been trying to find a part time job to supplement my income during the school year, and be able to work in the summer when I don’t get paid from my regular job. I can make it work. I can work a couple of evenings, and maybe one weekend day, while holding my full time job. I mean, it’ll take some of the stress off, right? I can do this. No excuses.
Meanwhile, my husband sat in his recliner. No, he isn’t lazy. Far from it. He was hooked up to the dialysis machine that keeps him alive. He does this 5 nights a week for several hours. He can’t be alone when he is hooked up to the machine. I have to be here with him, or another adult has to be with him, in case something happens or he needs something. I figure that should give me the time to clean, do laundry, and cook, since I’m home anyway, right? No excuses. There is no excuse. There is no reason that I shouldn’t be getting everything done every night.
These are the things I say to myself all the time. Then tonight, as I sat here, I heard that sound a record makes when the needle scratches it. You know the sound, if you are old enough. Now, I didn’t really hear that sound…it was in my head. But I noticed the negative chatter in my head and stopped myself. What is wrong with me? I never stop, and yet it still isn’t good enough for me. The house isn’t clean enough, I don’t cook enough, I don’t keep up with the laundry, I’m not giving enough time/money/attention/experiences to my kids, I’m not giving enough time/attention to my husband, I’m not making enough money, so I can’t provide enough. I also tear myself apart because of what other people might think. They’ll think I’m lazy, or dirty, or simply not good enough. I make it seem like I can handle it all just fine, but I really can’t. Why is that not okay?
Honestly, I don’t know how to fix it all. I’m trying to accept that this is my life for now. My house will be messy, the laundry won’t be completely done, we will eat take out more than we should, and if other people come over, they will have to tolerate the mess. People will always judge what they haven’t lived. I’m judging it, and I live it. I’m just trying to get myself to the point where I can say “enough is enough,” and be okay with just doing the best I can for now.
Read more on Renee’s blog.
The first thing my mom said to me when she was diagnosed with Huntington’s Disease was that she never wanted her children to have the burden of caregiving. She couldn’t have stressed it more. Even though the disease had already taken pieces of her, she was still our mom at her core. She still put our needs and hopes above her own. She wanted to protect us from the scary reality of Huntington’s Disease.
Huntington’s Disease, also called HD, is a progressive, hereditary brain disorder. There is no cure or proven treatments. The disease often starts as subtle mood swings and progresses to the complete loss of an individual’s ability to walk, think, reason and talk. The other kicker is, as it’s hereditary, the chance of passing on the disease is 50%. My mom remembered the brutal emotional impact of being a caregiver to her own mother (my grandmother) who suffered from HD. It’s hard enough being a caregiver; it’s even harder knowing that every decline in your loved one could easily be a glimpse into your future.
My mom was just 56 when we began looking for memory care facilities. With family spread out around the country, the burden of caregiver was primarily on me. I was just 27, newly married with newborn twin babies. I was also my mom’s Power-of-Attorney; her person; her voice. We had spent the last year or so flailing. She had gone from an apartment to senior housing to traditional assisted living facility within months. Each of the places she lived promised us that they could handle the ups and downs of Huntington’s Disease. Very quickly we realized that she needed more help than we had anticipated.
Memory care facilities seemed scary. The first time I toured my mom’s community, I cried. Hard. It’s hard to accept the idea that your parent will only continue to decline and that a memory care facility may be the appropriate place for them. At a certain point, the real world isn’t appropriate for someone with dementia. It didn’t feel fair for me to try to fit a square peg in a round hole.
To be completely honest, the option of caring for my mom in my own home was never even a consideration. With newborns at home, I was exhausted and barely had a moment to feed myself or go to the bathroom. I was in no place to add another person to the mix. And to top that off, my mom’s initial request for me to continue to live my life still lingered in the back of my head. I knew that’s what she would want.
We have been so happy with our choice to move my mom into a memory care facility. My mom is busy and happy. They go on weekly outings to places that I would never be able to take her to with two babies in tow. They do yoga, take writing classes and do crafts. She’s exposed to so much more than I would be able to give. Every time I visit her, it gets less scary.
Going into a memory care facility with toddlers is a distraction from the darkness of dementia. For both myself and my mom. To my two year olds, they know no different than visiting their Bubbie at her “big house”. My kids get attention as soon as we walk in. They wave and smile to all the residents and staff. They play with the community dogs and run down the hallways. They don’t see that my mom is different from other grandparents. They love her for who she is in this moment.
And, my mom truly benefits from her relationship with my kids. They bring a light into her world. She isn’t the grandmother I always pictured her to be, but she’s able to play the role nonetheless. I am grateful my kids have her in their lives. I am also grateful that they don’t have to witness me bathe my mom or give her her meds.
With all that said, that doesn’t mean I didn’t feel guilty when I drop her off or when my babies are sick so I can’t visit her. There are bad weeks when my mom wants to leave and doesn’t understand why she lives where she lives. But those pass. Like anything, accepting our new reality takes time.
I’m grateful that we were able to find my mom a home that fits her needs. I’m grateful that my relationship with my mom isn’t strained by the day-to-day responsibilities of caregiving. I’m grateful that my kids get to have a sweet relationship with my mom in doses. I’m grateful that I know my mom is safe and secure. Being a caregiver is not easy no matter what your circumstance, but a memory care facility is what keeps my mom happy and healthy and what keeps our family unit moving forward.
No matter how rewarding caregiving can be or how much we love the person we’re caring for, caregiving is frustrating.
Frustration just comes with the package. We’re human and caregiving inevitably involves situations and tasks that are inherently frustrating. So many of us feel guilty for losing our cool, but it happens to even the most patient caregiver, eventually.
Frustration is a daily challenge. My dad’s other 3 children make no attempt to even call him to say hello. So there’s no real break or support when my dad needs to visit the emergency room.
Because I am also my 22 year old autistic son, frustration can magnify greatly. My son struggles when he must wait for something he wants to do. Like visit a very big mall about 50 minutes from home. He also struggles a bit with sharing me with his grandpa.
Frustration, too, to eke out some time for just myself.
Frustration is and, probably be a big part of my life for the next while. – Mimi
Frustration comes up a lot when we talk about the struggles of caregiving. Dorothy, Bob, Giselle, Harriet, Judith, and Roz all talk about the frustration that results from difficult people and challenging situations, day in and day out.
What’s your biggest caregiving frustration?
My husband had a stroke four and a half years ago. He uses a wheelchair and needs assistance with any transfers. Also, his judgement is not always the best when needing to pick something up from the floor. My biggest frustration is not being able to complete a task such as folding laundry or doing dishes without having to stop and help my husband. I love him so much and understand his frustration when needing to ask for help. If I don’t respond right away, he will try to do things that are not safe. – Debbie
I’m maintaining a writing career while caring for my disabled husband. Often when I’m writing, I have to stop what I’m working on and help him. This interrupts my thoughts, my word flow, and my productivity. Still, I’m determined to keep on writing, and created a series for family caregivers. – Harriet
In the end, it’s the frustrating/bitter/sad realization that this is a path you walk alone, mostly behind closed doors. No one has the history you do. Honestly, I do not expect people to understand, even the relatives. Friends and family do the best they can, really, most of the time; but everyone, EVERYONE, has life’s curve balls to deal with. – Melissa
Not having any help and everyone second guessing everything you do. – Dennis
Lack of sleep
My biggest frustration is losing so much sleep. I never know when he will get up early in the morning and trigger the alarm. After I wake up from sleep I can’t get back to sleep knowing he is walking around needing me. – Gina
Navigating the system
The process to obtain Disability Benefits for my wife diagnosed with PSP was the most frustrating ordeal I have ever dealt with!! Every time I think about it now steam still comes out of my ears. – Paul
It’s okay to get frustrated
I don’t care what other people think. My closest friends know I love my husband. But I’m human. Actually, I’ve circled the wagons, and keep in touch with only the ones who get it. The rest? I’m polite, but I don’t really hear what they say. – Melissa
Frustration is a normal, even healthy, part of being a caregiver. How do we cope with it?
If you can, take a break. You probably can’t take the day off or even get an hour’s peace. You can hopefully step into another space for a minute to take a deep breath and clear your head.
Focus on problem solving. Is there something you can do to make a situation easier to deal with? Sometimes there isn’t. In that case, we need to learn to accept things the way they are.
Think about the big picture. If you’re frustrated with a person, be it a customer service rep or the person you’re caring for, imagine things from their perspective.
Remember it’s okay to be upset. Being frustrated doesn’t make you a bad caregiver or a bad person. It just makes you human.
Part of it requires cultivating your overall resilience. The more resilient we are, the easier we can rebalance after something throws us off.
Remember, caregiving isn’t for wimps. Take a minute to recognize how strong you are to have made it this far!
Caring for the older generation
Qi Jianguang feeds his father Qi Wenjiang at the farmhouse he rented near the construction site where he works.Du Huaju / Xinhua Son honored for looking after his partially paralyzed father For many young Chinese living in the country’s rural areas, the only way to find a well-paid job is to leave their hometown and move… (more…)
Up. Up and away… not in a balloon, though that would be fun, but in a chair lift scaling a precipitous mountain in the French Alps. Lake Benit lay hidden in a crater out of reach to David and me. We’d called ahead to find out if the chair lift would take somebody so handicapped. “Mais oui. We stop the lift, help him on, stop it again to help him off…et voila.”
I pictured the frenchness of his shrug. Imagined the incredulous are-you-mad-you-didn’t exclamations of our friends back in litigation-fearing States; the disclaimer forms we’d be forced to sign should the lift operators even agree to allow him on. This happened just two summers back when David’s balance often tipped him to the ground and he could no longer hold his body upright. Legs dangling swinging above the pines, clutching the safety bar across holding us in the chair we made it to the summit, our children and grandchildren encouraging. The only person fussing — me. Oooo. I shiver — the clang and judder of the chairlift bumping along the wire.
The scary ride was worth it — the picnic and view — a dream. Leaving David propped happy in a folding chair among the crocus and blue gentian, we scattered to explore. Shame I didn’t have my camera ready when I returned, captured the scene, David hunkered in his chair encircled by curious cows. It seems David attracts them. Once in Costa Rica returning from his walk, I met David, sheepish, behind him a string of maybe eleven cows plodding in his footsteps along the black sand beach.
Memories such as these are what support me when I sink depressed. Uplift me and remind me, Parkinsons or no, we can and still do have fun.
What I am saying, Caregivers, is don’t hold back. Be bold. Defy the damnable disease. I’m surprised how much David is still keen to do with gentle prodding.
If I have anything to offer, caregivers, I’d say jump at every chance to take a flying leap at all the wild things you’ve dreamed of doing while you can. Ride that air balloon, paraglide the air currents beside the ravens riding tandem… Learn a new language? Why ever not. Walk the treadmill? Don’t listen to fuddy-duddies who insist it’s too dangerous, just make sure somebody is with him. Compete in the Senior Olympics? Hell yes. DO IT.
David and I took up ping-pong just a couple of months ago. Fearless, at first David staggered backwards after every ball and sometimes fell, but now? He’s become a tiger. Zip, zip, his improved balance, hand/eye/mind coordination the ball skims the net.
“I’d like to sign up for the Chi Center’s Qigong Course,” David surprised me last week. So we did. Lasted the full eight hours.
“I’d like to try medical marijuana,” he declared a year ago. Helped a little but not enough to renew his card.
Fly? Why not? “If he can sit in a chair watching TV for hours, then why not in a plane?”
We ordered wheelchair assistance at the airports, found people to rent our house and took off.
Up, Up and away we went…a bamboo palapa in the trees above the beach in Mexico; snakes and rain in Belize; the ruins of Tikal in the Guatemalan jungle; hot springs and volcanoes in Chile; summers in Spain, Italy, Scotland, France…ten days in a rubber dingy riding through the Grand Canyon rapids… We crammed our lives.
“Sri Lanka was the best of all,” David said one day thumbing through an album and laughing at the image of himself wielding a machete attempting to hack open a coconut and remembering how his sarong slipped.
Turning a page, topless, I walk again the black sands on the isolated beach beyond the ginger plants and lemon grasses around our shack. Call songs of love to the waves.
Could fourteen years have passed since Kerala?
“Damn weird place to honeymoon,” my son remarked when I told him we were off to an Ayurveda Nursing Home in India for a month’s treatment.”
Our quarters were a sand-floored hut, our bathroom open to the air with a resident scorpion in the basin, and bed with a coconut-coir filled mattress. We were in heaven. David checked in with a fading voice, and head constantly moving. Twenty-eight days later checked out with a strong voice and head no longer jiggling. Exhausted, oiled, pummeled, clear-skinned and healthy, “It took six weeks on a beach recovering,” we jest.
This winter we’re off to Puerto Vallarta for two weeks. Vacation and dental work combined same as every year for the past seven. Cheaper dentist, the savings make our holiday free — well ALMOST. This year I’m nervous managing David on my own so a good friend will share our space. Boost my confidence. Help me.
“Hey, hurry, hurry, David, look, a double rainbow. Let’s sit on the porch and watch,” I cry shuffling him through the door.
It is too easy for the two of us to slump feet up, stare at nothing, and slide into the ether. You too, I suspect caregivers, if you’re tired as I am.
Parkinson’s disease weighs so heavy sometimes. Squashes me flat. David’s shell sits keeled to one side unresponsive. No cajoling hauled him to the present. Would he EVER return? I pretend he isn’t there. Re-focus on Lilies, a British film I’m half watching. Fight back tears, forgetting we were once a regular couple that met and fell in love at our village rodeo 35 years ago…our courtship of eighteen years.
“Remember when…” I coax myself. Drop my caregiver mantle. Revived by memories. HAPPY ones…his joke as we signed the Marriage License, “I don’t know what the hurry is.”
My husband, my David, my best friend floats into a world beyond my reach, I turn my head and see not the wrecked human he now is but the sensitive, gentle being who first introduced me to a moonrise — the heavy yellow orb releasing slowly from the mesa flooding the Galisteo basin so brightly we can see each rock and juniper tree. I’d noticed no such beauty in suburban England. Barely witnessed a sunset through her grey pall.
It came to me then: proportionally speaking these down years are but a small toll to pay for the thirty years of good. I have enough memories tucked into my brain to see me through.
Change the prescription of your glasses, I once heard an Indian Spiritual Master teach. I bought a pair of rose-tinted glasses. Keep them on my puja, altar, as a reminder to see the world in a different way. After all isn’t there a silver lining in everything? Difficult to think WHAT sometimes. Well…his Parkinsons, my caregiver role has brought us closer, that’s certain. Worked my character over too—most likely for the better. Parkinsons? Yes, the disease has taught me to see the less abled in a kinder light, discover what matters in our lives. Educated us in subjects we’d never heard of before P.D.
Without David I’d be rattling alone in an empty nest wanting him back…
“Give us a year together, God,” I prayed before we got married. “Please don’t let Parkinson’s Disease take him from me just yet.”
Now we’ve had fourteen years.
If your parent is undergoing surgery or is experiencing a prolonged illness, you may find yourself in the role of temporary caregiver. Understanding what to expect during the caregiving period will help you prepare for this role.
Adult children are often pulled among responsibilities to their parents, their own spouses and children, and their jobs. While temporary caregiving can be an opportunity to show your love and concern, it can also be stressful and absorb a lot of your energy. You can minimize the stress with careful planning.
First, set aside some time to make a plan. Does your home need to be rearranged or altered to give care? Does your parent need psychological or physical preparation for their procedure? Do you need preparation?
Organize Your Home
Think first about the type of procedure being done and what the recovery period physically requires. Consult with your parent’s physician if necessary.
A number of surgeries, such as hip and knee replacements, require patients to use walkers as they heal. Does your home allow for walker access? Does your parent need to be accommodated on a specific level of the house to avoid stairs?
Many procedures require special equipment, such as a bathroom bar, a recliner or a lifting apparatus. Be sure to check on all these requirements, giving yourself plenty of time to order and receive special equipment, and, if necessary, to rearrange your home.
Second, make your home safe for your recovering and possibly weaker-than-usual parent. Stabilize or remove any area rugs that might cause them to slip and fall. Make plans for a resting and sleeping area close to a bathroom. Make sure that light is adequate for an older individual to see and easy for them to adjust.
Prepare the Patient
Prepare to help your parent manage anxiety. It is normal to feel some anxiety about any procedure, especially surgery. Acknowledge this as part of your preparation. It can be very helpful to research the procedure together.
If your parent is having knee surgery, for example, it can greatly reduce anxiety to know that over 600,000 people in the United States have knee surgery each year, and fewer than 2 percent have serious complications. To complement the numbers, understanding what happens before and during knee surgery — like if radiofrequency ablation (RFA) will help or what type of metal components will be used — could ease the concerns you and your loved one have about the overall process.
You should also prepare by establishing a good relationship with your local pharmacy. Decide where you will go for needed medications before the surgery, so there will be no delay in filling prescriptions after the procedure. Make sure you have a list of your parent’s existing medications so you can discuss possible drug interactions with the doctor and pharmacist.
Will your parent be able to drive after the procedure? If not, you or someone else will have to drive them to their follow-up appointments.
Also, discuss insurance and finances with your parent. You need to know if they have any concerns about medical bills and charges, as this can impact both stress and recovery.
This is also a good time to bring up living wills and powers of attorney. While the majority of operations are successful, every adult should have their wishes on file in a will.
Understand What to Expect
Many patients spring back from surgery as soon as they start to physically heal, but it’s wise to expect some issues to pop up.
Medical interventions can be complicated. Your mom or dad may just not feel well. The procedure may have made them very aware of their aging body. Stitches might be irritating. They may have difficulty sleeping. Being in unfamiliar surroundings may be stressful. If the procedure requires dietary restrictions, they may feel frustrated — especially if they aren’t allowed to have their favorite foods.
Deal with issues as they come up. Be compassionate to your parent and show you care about them.
- Acknowledge their feelings and frustrations.
- Use humor if appropriate.
- Emphasize incremental recovery.
- Discuss the future optimistically.
- Prepare the best meals you can within the indicated dietary requirements and eat the meal with your parent.
If they are having trouble sleeping, could a television, radio or computer provide entertainment late at night? Could the two of you play cards or another favorite game? If the unfamiliar environment is an irritant, could their space be enlivened with favorite pillows or decorations?
One good method to reduce stress for both you and your parent is to set up an online social network. Many older people adapt very well to social media once they see its benefits. Many social media sites like Facebook have groups for people who have particular conditions, such as joint replacements or diabetes. It can be helpful to read those stories.
There are social media sites for temporary caregivers as well. Set yourself up on one of these sites to obtain advice and support.
Temporarily providing care for your mom, dad or another relative can be a time to bond and show your love. But it can also be a challenging time. Prepare your home, your parent and yourself for the caregiving period and know what to expect, both physically and psychologically.
Image by Unsplash
As someone suffering with chronic pain for nearly 8 years, I can tell you it’s never an easy day. Every day and sometimes every hour can be different, I have no control over my body and how it feels from one moment to the next. Most of the time my mind wants to do things, but my body doesn’t allow it. I know that many caregivers and loved ones have asked or thought how can I push/encourage my loved one with chronic pain in a “good” way? I don’t want to push too hard, but I also don’t want my loved one to miss out.
Let me be the first to say we really do not like the fact we can not make plans anymore. We really do want to be an active participant in our friends and families lives. We do have the best intentions when we say we will be there and when we can not it really does bother us.
I decided to ask the chronic pain community how a caregiver or loved one can encourage someone with chronic pain. Here are our top answers:
“Help out around the house or with dinner so the person isn’t too exhausted to do other things. If it’s an event type thing the person wants to go to, make the person feel like they can be honest about how they are feeling. Let them know they will not let you down if they have to leave early.”
“I’ve been blessed with some amazing people in my life that help. Support is the key. I always think of the spoon theory. I only have a certain amount of spoons, and if I want to get out to do something fun, I need the energy, which is very sparse during a high pain day. I get the most help with people offering to take my kids for the night, bringing meals over, helping with housework. I have a hard time asking for help, but this is what I’d ask for. “
“My husband and young adult kids would buy me little things to encourage me. For example, Superwoman PJ’s, because I was doing therapy at home as well as at a place, and they saw how difficult the smallest task was. They didn’t treat me as disabled, but they were always there to make my life easier in trying to regain movement.”
“Pay attention first. Be a steady shoulder second. Understand that everyone is different and it’s about the individual’s ability to push past the pain. If you can do that then you will know how to push/encourage them in a positive way. After all, it may appear we need a push or encouragement, but really what we need is support. Be supportive and that will eventually give us the encouragement you are looking to give.”
“Read as much as you can about what they are coping with. Knowledge is the answer.”
“Communication is very important. A phone call or simple text asking how you are doing is everything. Keep communicating and supporting even if the person in pain keeps declining your offers to get out of the house to do something. Support is key.”
“For an event: Listen to why they are hesitant about attending, is it an issue that could be problem solved or is it an emotional issue/fear of showing their pain to judgmental eyes? Do they know they can count on you if they become overwhelmed/exhausted or if they are faced by a person offering up free advice without understanding what it took for them to even leave the house? Are you willing to be their companion and their guard dog? Do they know this, deep in their heart do they trust this about you? This is how you push/encourage them in a good way. You let them know that you’ve got their back.”
In closing, the best way to encourage us and push us in a good way is to be supportive and keep communication open. Come up with a plan, but keep things flexible. Please remember we are already hard on ourselves and we truly do not like missing out, making us feel guilty about it is never the answer.
About the Elizabeth pain
Elizabeth Pain has suffered with Complex Regional Pain Syndrome for nearly 8 years along with other pain conditions. She has been married to her best friend for 14 years and a mother of 3 amazing children. She became active within the chronic pain community nearly 7 years ago when she started an online support group for those suffering with CRPS and their family members. She finds comfort in helping others and has found writing helps distract her from her pain. Nearly 2 years ago she branched out and started a website for all chronic pain conditions called The Unbroken Smile.
The first session at the Aging in America conference that I attended last week was titled, “Is family caregiving the next public health crisis?”
I’m sure all of you can guess what the answer was: a resounding yes.
After attending this year’s conference in Chicago, I came away with two major impressions: there are many aging and caregiving battles ahead of us, but we also have an army of smart, determined, and compassionate advocates who are dedicating their lives to the cause.
It was empowering to witness family caregivers being recognized, supported, and championed, instead of being marginalized, trivialized, and ignored. It was inspiring to meet so many professionals who are working tirelessly to address the concerns of caregivers. I presented my Respite Care Share concept as part of the poster sessions.
Progress is being made, but there are still many issues left to address. The recurring topics I heard addressed throughout the conference:
- Managing the financial toll of caregiving
- Ensuring family caregivers are recognized by the medical community as essential members of their loved one’s care plan
- Making sure family has adequate support system
There are no easy answers on the financial front, with America’s health care legislation a political football that has been punted for the time being. There are various bills tackling the cost of caregiving that have been introduced in Congress, but it’s at the state and county levels where the most innovative programs are being launched. Family caregivers should contact their local aging agencies to see what aid and other resources are available. I talked to several people who work for community health agencies that stressed how in some cases, aid is available, but people are unaware that such programs exist.
The CARE Act, which has been passed in dozens of states, requires hospitals to record the name of the designated family caregiver on medical records, inform that person when a patient is discharged, and provide training to the family caregiver for medical tasks that will need to be performed at home upon patient discharge.
Support for caregivers in all forms was discussed extensively at the conference. Expanding respite care opportunities and making sure that caregivers have the supplies, training and access to health care for themselves were all topics of discussion. A focus on diversity was also a major theme of the conference. The needs of an African-American middle-aged caregiver may be different than a millennial caregiver from the LGBT community, and programs should be flexible in addressing a diverse population.
More effective communication was a recurring theme in all of the sessions I attended. Caregiving professionals expressed the need to reach family caregivers before they burn out. Establishing that communication early on, starting in the doctor’s office, is key. Many medical professionals said that they don’t have the resource information they need to distribute to the family caregivers who walk through their doors.
Family caregivers will need to continue to speak up and speak out while advocates continue to champion our cause. If you are a designated caregiver, insist that medical professionals keep you involved in your loved one’s care plan. Don’t be afraid to ask for training or assistance when it comes to performing medical tasks at home. And though it may sound downright impossible, don’t ignore your own health and well-being. Even an hour away at the coffee shop enjoying a good book while a neighbor or friend watches your loved one can make a difference. Join a support group or caregiving coalition. There are online outlets as well as in-person groups.
I can’t think of a stronger group of people to deal with a crisis than current and former caregivers and their advocates. Let’s keep fighting.
I think about my mother a lot. A flood of memories comes over me as Mother’s Day grows closer. My mom was a beautiful, strong willed, loving parent. Our house was the place all our friends hung out. My mom would hold court at the kitchen table and they would seek her counsel on dating and share their secrets with her. She died 32 years ago.
An initial diagnosis of breast cancer happened while I was still in college. She wasn’t going to tell me about her upcoming surgery because I was away at school. I sensed something in her voice on my weekly phone call and forced my parents to tell me what was going on. I rushed home to be there for what turned out to be a radical mastectomy. I acted as an advocate for my folks and came home regularly. My mom did great for 5 years. Unfortunately the cancer metastasized to her bone and eventually moved to her brain.
Mom wanted my father to be her primary caregiver and made it clear she would remain at home. During the remaining 2 years of her life the cancer ravaged her body and her mind. She would not allow us to get any outside professional help. She was weak and needed help with moving around, bathing, and dressing. She would let her kids help her minimally with some reluctance.
For both my father and me the most difficult challenge was the massive personality change that occurred when the cancer entered her brain. She became an angry, verbally abusive, aggressive woman. My dad had a difficult time dealing with it. So did I. She threw me out of my childhood home at one point with our provocation which felt so hurtful. I wondered how my dad could tolerate the ongoing abuse?
Incredibly for us on her final day on this Earth my old mother returned. I had told her my brother and sister were on their way from California and New York to be with her. The doctors had told me she could die at any moment. My sister, father, and I held a vigil at her bed and then it happened. She came back to us. There were smiles and words of love exchanged. To the amazement of the doctors she waited until all my siblings arrived that night and said her loving good byes to them. Then she peacefully slipped away.
I am much older and fortunately wiser now. I have the benefit of 40 years as a medical social worker and life experience. I have thought about what I would say to my father and my younger self with the benefit of that knowledge:
- I would remind us that the mean person she became was not her. It was caused by the cancer, a disease whose symptoms she was helpless to fight or control. It is important to separate the medical condition from the person. I know that is hard at difficult moments. I remind myself of that when I recall that awful day she threw me out. I have come to understand and believe this is true. I choose to remember the loving mother I had.
- My mom was young when she got sick. She was only 50 years old. She and my dad never had a discussion about what she would want to happen if she became ill. No advanced directives were in place outlining her wishes about medical care, life support, or anything. It would have been so helpful to know her wishes and a source of comfort to us knowing we were carrying them out.
- Finally I watched the physical and emotional toll that being the primary caregiver took on my father. He was almost 70 years old when he was fulfilling most of the caregiver needs for my mom. He told me multiple times that he wanted to stop or at least take a break but he didn’t. He was burned out, angry, and stressed out. Dad did not let us help too much because he wanted to honor my mom’s wishes. The problem was she was not thinking clearly due to her illness and the demands she was making were virtually impossible to fulfill. I would have advised him to take more respite time and get additional professional help on top of what we were able to offer my parents.
It is always easy to look back with the passage of time and think about how we might have managed the care of both my parents differently. The lessons learned from this experience helped my father and I as he aged and needed a caregiver. The directives were there as was many conversations between us that created a level of trust and understanding. We altered the level and intensity of care he needed as his medical condition altered with him and it was a collaborative effort among my siblings and my father. We helped him to die with dignity at age 96 feeling his wishes had been honored. That gave us all a measure of comfort that will stay with me forever.
Sometimes you can’t get help for caregiving, because no one is willing to step in. Even professional caregivers.
We are 68 years old and caregivers for our 40 year old Autistic daughter. She is high functioning and also obstinate and difficult to live with and work with. As we are aging, we are physically and emotionally exhausted and are unsure how our daughter will be cared for when we can’t do it.
She is a “behaviorally abusive” to us, making it very difficult to enjoy her. She can turn a good time for her (or should be) into a nightmare of hitting, swearing, pounding on herself and throwing objects. She is on medications to help, causing her to gain 60 lbs, making her tired all the time and not helping with her with her temper and outbursts.
Many things can trigger her outbursts, including not getting her drink filled to the top without ice. She will go into a rant and show her fists to restaurant servers saying they should be fired. She worries that someone will sit in “her seat” or “touch her stuff” as she works herself into an out-of control state. No words or actions seem to defuse the situation.
As caregivers we are constantly living in a state of foreseeing and correcting her environment to avoid a major outburst. We are emotionally empty and feel helpless. Other caretakers we have had help us will say, “how to you do it? You must have the patience of Job!”
Early on babysitters said our daughter can only be cared for in “thirds”. Anyone having to be with her more than that can’t handle her. Guess what? As parents we are in charge of her 24/7.
Feeling hopeless we are both very depressed. Others around us don’t see this as we don’t talk about it as we would quickly lose our friends.
We have had several psychiatrists and psychologists work with us and with our daughter, but none have been able to provide us with “long term” results. Let’s just say that many traditional methods do NOT work.
Over a fourteen year period, I had five different family members who needed help quickly and unexpectedly. Did I live near any of them? NO! Was it worth it? Yes it was! Would I do it again? Yes, but admittedly with some trepidation. Was any of it planned? Absolutely not!
Would I be better prepared? Yes! Did I learn more than I ever could have imagined? Yes…and then some.
All five experiences began with a phone call. Each call was from or for someone in crisis. Each call meant I needed to respond quickly. And, all calls meant flying or driving long distances to meet the needs of the crisis at hand. With this came still more phone calls, juggling schedules, buttoning up things in my life, packing quickly, finding flights and organizing my world as best as possible before leaving.
With long distance care came a sense of panic. I got better at it over time, but honestly, I never did get used to it.
I’m no expert in long distance caregiving, but have survived five experiences with family members, where one phone call put me on high-alert and launched me into action. How I helped varied with each person—their life situations, ages, state of health and how close we were. Each time, I learned new skill sets and better ways to cope.
My background as a clinical and school social worker gave me a leg up on knowledge about the system, finding resources and helping people in need, yet I wasn’t fully prepared for the emotional aspects of the “job” of caring for a family member from afar.
If I knew then what I know now, I might have had many of the same feelings and challenges, but not been as frightened or felt so alone. Sure, I had people around me who cared and offered me support, but the difference was the newness and suddenness and way things seemed to pile up on me. I was left feeling alone, and like I was drowning in a sea of stress. Everyone’s story is different, yet a common thread exists in all of our experiences.
Living far away from our loved ones doesn’t mean we aren’t connected. Certainly, some people aren’t connected; some people wish they were and some don’t.
When the need arises to help a family member in need we have a choice, drop everything and try and do it ourselves and/or share the responsibility with others, be it friends, family, or paid assistance. This is not meant to judge, but to clarify and identify some of our choices.
It all sounds so simple on paper— like a logical set of options. Unfortunately, the emotional aspect of the many layers of caregiving make a difference in how we cope with the hand we’re dealt. How we can be the most effective advocate for our family, in part, depends on the personality we bring to the role and our relationship with the person in need. And then there’s the practical knowledge we possess regarding everything from where they do their banking, to whether or not they have a POLST or Living Will.
I was quick to learn that as someone who was trying to help a family member from afar, establishing myself as a strong and effective advocate was essential—and sometimes even life saving for those I cared for.
The dynamics of taking care of a sibling differs greatly from taking care of a parent, aunt or uncle. Family baggage can color this care, and it takes understanding, strength and the ability to ask for help when we need it ourselves.
My own feelings of guilt from being away when I was needed or wanted to be at home was one of my biggest challenges. On the flip side, it was excruciatingly difficult to leave family members in a hospital, nursing home or hospice when I had to leave.
This was probably the most difficult part of my long distance caregiving experiences. I tried my best to make what felt like a lose/lose situation into a win/win. But I couldn’t. I forever felt I had one foot in and one foot out when it came to being at home or being with my loved one. Social gatherings suddenly felt awkward and foreign to me. I couldn’t fit in, harboring feelings of guilt for having fun. I felt this most while caring for my brother.
Like so many of us, I tried to be the hero at first. I took my role as caregiver very seriously and wanted to master the twists and turns. I learned the hard way this wasn’t realistic. I felt I was “bothering” people when I needed support or simply raged about my frustrations. I found I couldn’t do it alone though I started off wanting to.
While caring for my brother, who’d been diagnosed with cancer, I sought professional assistance from a Life Coach when I accepted I could not do this alone. We’d speak by phone, eliminating the need to be physically present for our sessions. At the time, I still felt I had no time for this, though now I honestly wish I’d found this coach during my first caregiving experience. It was a Godsend!
What helped most was accepting and understanding that my feelings were normal. I learned taking breaks was necessary, warranted and okay. Even when I couldn’t be there, I checked in daily with family members and/or the staff caring for them. My calls let those caring for my family know that I was concerned and vested in their well-being. And, I found most facilities welcomed family support, though I can’t say that all of them did.
I was fortunate to be someone not afraid to ask questions. I was very invested in making sure that my family received the best possible care and attention, even when I was not physically there to advocate for them. Daily involvement, even by phone, is time consuming, but well worth the effort.
My Short List of Lessons Learned
- When we get the call we have a choice to help or not help. If we do choose to help, then we must arm ourselves with support, information, resources, backup, and ways to take care of our own needs. Knowledge is power!
- Find someone to talk to, be it professionally or via friends and family. Be prepared that some friends do not want to know the drama and the details. Try not to take it personally.
- I learned that I could not control everything. Yes, we all know this intellectually, but in my caregiving role, I felt like a failure when I could not help ease someone’s pain, or change the course of events, or make a nurse or doctor behave more empathetically or with compassion.
- Find who to talk to in the system of care, be it a hospital, nursing home, assisted living facility, hospice center or wherever your family member lives or is receiving care. Try to find an ally within the system; sometimes it may be a receptionist in a nursing home.
- I learned that how we speak to those who care for our loved ones, be it a nurse, aide, social worker, physical therapist PA, etc., our tone, that is, how we ask for help and who we ask make all the difference in getting the help needed.
- I learned it’s of the utmost importance to educate oneself about our loved one’s illness, their treatment recommendations, the care protocol and what systems are in place to provide that care.
Of the countless lessons learned over my fourteen years of long distance caregiving, one key lesson was how important it is to “plan for the worst and hope for the best,” be it regarding finances, medical care or end of life planning.
I know that I am not alone. Like everyone, I can only speak to my own experiences. They were personal, unique and filled with hurdles—but also blessings. I am sure that if you are fortunate enough to be able to drop everything and help those you love, though it may mean some personal sacrifice, as you look back, you will feel and know it was the right thing to do. Caregiving is a very fulfilling experience; albeit a very difficult and life changing one.
Once upon a time I thought that tragedy only happened to people on TV. I think many of us millennials were taught to think that nothing bad could happen to us. We were normal, we all won awards, we were protected from the world. It was all butterflies and rainbows. I don’t fault our parents for treating us that way. Like every parent, they do the best they can.
Before Huntington’s Disease entered my life, my view of people dealing with tragedy was that they were all angelic. They didn’t swear or have bad days. They didn’t have moments of darkness when they just couldn’t stop crying. In the news, these people rose up from shitty situations and became beacons of light in their community. Or maybe they found religion and found their own peace in that.
And so, when my mother was diagnosed with HD, I thought maybe that could be me, too. I thought that maybe I was one of those inspirational people. I read books about religion and finding peace. I even ran a half marathon just to prove that I could. I was stuck in a spiral of how I was supposed to grieve.
Tragedy changes aspects of you. It doesn’t change your core. I’m still snarky and sarcastic. And while I believe I’m a more patient, compassionate person since HD has entered my life, I still get frustrated at slow drivers on the 101 and still love watching trashy reality TV.
It’s okay to be normal. It’s normal for things to be shitty.
I know quoting the movie “Now and Then” does not make me seem intellectual. But truly, the most meaningful quote in my life right now. In an age where we are constantly surrounded by inspirational stories, impossibly perfect Instagram shots and the endless parade people fighting against all odds, I think it’s important to remind ourselves that it’s okay to sometimes wallow in the shittiness of it all.