Resilience. Tenacity. Strength. Toughness.
Whatever you want to call it, caregivers need it. It’s that thing about your personality where shit is exploding all around you and you just roll with it. Roll up your sleeves and get to it, every day, no matter what.
Inner strength is a decision.
There’s no trick to it. There’s no pill to take. You just decide that you’re going to do this, come hell or high water. And then you do it, no matter how hard it is.
Put one foot in front of the other.
We all take it one day at a time, one moment at a time. Fear, despair, anger — emotions are irrelevant when you’re busy. Acknowledge your emotions, see what’s behind them, and then move past them.
Know why you’re here.
Everything I do as a caregiver has a reason for it. I’m here because I choose to be. Are you doing this to show your love and devotion? Are you doing it because you’re living your values? Are you doing this because you love helping people? Know your reasons and remember them when things are tough.
It will always be hard.
Caregiving gets easier, but it’s never easy. The harder I push myself, the more I can do. I’m stronger than I can possibly imagine and I know that. We all have a source of strength — cultivate it.
Create a bubble.
I don’t care what other people are doing, I care about what matters to me. By surrounding myself with a community of people who put community first I save myself from the opportunity to feel jealous about other people’s lives. I’m committed to my life as a caregiver and I don’t want to waste time on a life I’m not living.
No matter how strong you are, we all have our breaking point. Respect it. You can’t go 110% all the time. It’s okay to give 50% if that’s what you need to do to keep moving forward. You can’t sprint forever.
You need highs and lows.
Being on high alert all the time will kill you. Our bodies aren’t designed to be hyper vigilant at every moment, it wears us out. There are boring moments, even in the ER and the ICU. A lot of them. Cherish them. Allow yourself to be bored.
So many caregiving guides make it sound like there’s plenty of help to be had, if only caregivers would ask.
We know that’s not quite how it works.
Yes, some caregivers don’t ask for help and your chances of success improve if you ask the right way, but it’s a fact that lots of our requests for help will fall on deaf ears.
Or the ears of people who really would love to help, but are too busy that day. Some people just won’t help.
Here’s the story of real caregivers who’ve gotten help, how they got it, and how it worked out.
It’s worth it to keep asking and keep searching.
I have been wanting tangible help for years. I have tried to get VA caregiver respite and they say it is a long process, so try the county. I contacted my county, but unless you are broke and nearly homeless you don’t qualify — and if the receiver can handle most ADLs, forget it.
That leaves either pay $30 an hour or hire a kid. When what we need is some help with chores and companionship, $30 an hour is best saved for other things.
In 10 years the only respite I have found was through Lifespan Respite. They offered $1000 worth of time in a voucher, but that included drive time for the caregiver and the only women who could come was an hour away. We lost two hours worth of her service, but she was great.
But that was 3 years ago. I have yet to find a way to get a break. As the caregiver, I knew I would need help. Friends are great, but I wanted a helping hand from someone who could think in advance about what I might like — because a caregiver knows.
Yesterday I had help — but it became a major annoyance. Three guys all at once felt like it was a football party not a recovery room.
I am parent and primary caregiver to my 26 year old disabled son. He was on the waiting list in our state of PA and after completing his schooling at 21, then was pulled from the waiting list and after a few months or so was approved for caregiving services in the home.
We went through 2 agencies and about 10 caregivers before coming to the conclusion that it wasn’t working for us. The caregivers were either poor in attendance, were no-shows, or actually fell asleep while on the job. We could not depend on them.
Now, I was approved back in summer 2016 to be paid to caregiver for my son. I went through the application process, job interview, training and am now an employee of a caregiver agency.
I really needed the financial support so this worked out. The only drawback is that I never receive respite. I only have my middle son to fill in for me when I need to leave the home to run errands.
The rest of extended family and father to my son has basically “checked out” of the situation. So it goes.
My son, Rob, has seizure disorder, Epilepsy and is both mentally and physically challenged. He falls into the Autism Spectrum and is officially diagnosed as developmentally delayed. He is homebound. His first seizure was at age 2 1/2. His physical body slowly deteriorated over time. He use to be able to walk and attend school and social functions until his late teenage years when his legs gave out and he couldn’t walk and eventually could not sit up.
He is mostly a happy young man with a great smile and a laugh that brightens up the room.
When I ask for help, it’s asking for driving assistance to either a haircut or the dentist. If help is not available, I just rearrange my schedule. So far, I haven’t need ‘personal’ assistance in the form of toileting or grooming or walking-type help…but it’s coming.
So, I have no ‘helpless’ experiences other than those I create in my head. I’m fortunate, as my husband’s Atypical Parkinsonism is not acute enough to warrant daily assistance.
My husband had a buddy who was a former coworker who would take him for coffee each weekday morning and sometimes on the weekends, too. He was retired and probably felt obligated to do something for him.
After my husband was released from the hospital he had outpatient and home visiting therapists and nursing. He performed well for the therapists, but didn’t follow through on his own. He had two times that he was sent to care centers near the end of 2015 and almost used his 100 days covered by Medicare because of silent aspiration pneumonia.
The county supplied a senior companion. He worked out great, he had been a CNA, knew about electronics and got a DVD and earphones set up for my husband. They got along great. My husband was against the idea of a senior companion at first, but once he met the guy he came around. The company he was working through went out of business. Before we could arrange for him to come back through a different company my husband was back in the hospital and passed away.
I asked for help and didn’t get any more times than I can get into.
People tell you to let them know what you need, but come up with all sorts of excuses when you ask for their help. No one truly understands your situation unless they’ve experienced it themselves.
My favorite way to find help is by hiring someone whose personality is a caregiver personality but who is not a CNA/Medical type caregiver. The people that I have hired this way are now friends of mine and helped my Dad get through some very tough times with his Lewy Body Dementia.
Joy Meason Intriago
I do not get any help at all in being caregiver for my dad who is 78.
Because he retired from the railroad and does get enough benefits to
support himself. However those benefits do not provide any help for me, his caregiver.
Just recently my son qualified for an IFS Waiver, which allows me to get paid to be his caregiver. However the maximum hours I get are 37 hours a month.
Some responses have been edited for grammar and clarity.
Are children who have a physical disability as content and satisfied with their lives as children who don’t? Yes! In this enlightening talk, Lisa Thornton, a physician who specializes in the medical care of children with disabilities, will share insights she has learned from the parents of her patients who raise happy, well-adjusted children.
Lisa Thornton, M.D. is a mom and a Pediatrician who specializes in the care of children with disabilities. She is passionate about providing reliable health information for families and believes that childhood is the best time to develop lifelong healthy habits for the body and mind.
She is Medical Director of Pediatric and Adolescent Rehabilitation at LaRabida Children’s Hospital and Schwab Rehabilitation Hospital. She is an assistant professor in the departments of Pediatrics and Orthopedic Surgery & Rehabilitation at the University of Chicago Pritzker School of Medicine.
Dr. Lisa has provided health commentary for numerous TV shows and other media outlets. She has lectured to corporations and academic institutions and has led audiences to a greater understanding of a variety of topics including childhood obesity, childhood disability, and overall health and wellness. She is married with 3 children and has a brother with cerebral palsy.
It’s lonely here outside your world. I trace your profile with my gaze, the familiar silhouette on the pillow beside me for more than thirty years.
One room, two chairs we sit together of an evening in the rumble of television’s tunnel journeying ever closer to a mysterious world beyond our own. I would prefer music, scrabble, conversation. Head back, jaw slack I notice his eyes are tight shut.
“Open your eyes darling,” I encourage. “How can you possibly know what in God’s name is going on? ”
I don’t understand why him watching television through closed eyelids should that bother me, but it does.
“Beam in Scotty,” I joke, desperate to bring David back.
On good days the cracked vessel in which David resides releases the smart adolescent and child psychiatrist, the man he was, the man I married, my lover-husband and best friend, and we swap chit-chit before he sank turtle-like beneath the waves.
Has he even heard me, the stories I tell him, my questions?
“David, David, I’m talking to you.” Words roam, no sign of landing in his mind.
Is David—anybody—there? And if there is, is he who he was, or the he who he is now? The question tumbles many times a day. Each time, my answer shifts. All I know is I am lonely and miss him.
“Be thankful you still have him. You will miss him more when he is gone,” I tell myself, the breath of his human form, the endless chores of tending, the opportunity of purpose. I see myself padding the vacuum of this empty house oppressed by unnatural silence. His chair vacant, I eat alone.
I watch the effort of his emerging the crumpled human slumped voiceless on his dining room chair each breakfast, the snail energy it takes to pop back from inside his shell. By increments his head realigns with his neck. He snap-traps the drool sliding from the left corner of his slackened lips, retracts his left arm, always his left, through the armrest and creeps his blood-swollen fingers on the tablemat searching for his fork. His eyes are still shut, you see. He relies on feel.
No warning, without reason, all of a sudden, the David I married is back.
“Coffee please…,” Breakfast carries on as if he never WENT. “I’d like the marmalade, please. Do we have any plans for today?”
“He’s like a sea turtle,” I describe him to friends, “sinking then surfacing to life.”
Anybody home, I wonder of my David, the times he switches off. It could be minutes, half an hour or more, I find him, a statue frozen in mid-action sitting on his bed or chair, a sock dangling from his hand. Sometimes I catch him standing immobile, his face pushed against the wall. Can he hear or see me? There is no way I can get him to respond. Take today, Tuesday.
Breakfast over, well the eating part of breakfast, David flopped over with his face on the plate. I have given up trying to bully him to sit up. It’s best to leave him till he re-surfaces. When he’s that switched off there is nothing I can do. I cleared the table as best I could. Reaching awkwardly into a low cupboard, I lost my balance sending the butcher’s cart flying and me crashing to the floor. I hurt mostly from shock of landing on my back. Did David stir, raise his head? Not a muscle.
What if I really hurt myself, fell unconscious, I worry. How long would the two of us be alone inside our walls? This morning’s minor mishap is a wake-up call, one I’ve not yet thought through.
“Ah, he refuses to wear one of those press-button gizmos round his neck,” I second-guess the unspoken solution you’re offering me.
“If not him, then YOU wear one,” a voice whispers.
It’s a consideration I don’t much like the thought of, but I get the point.
I shudder when I recall Christmas two years ago. Speed-walking to catch the propane truck, I tripped and did a Stephen Hawkin flat face smack into the paving stones. Wham. Blood. Twisted limbs. Agony. Knocked momentarily to another world, my screams blended with the truck’s roar and gas hiss, and I lay there unheard. When the delivery men finally heard my “Help. Help” and carried me inside, David never raised his head.
I push that example away…too painful to face. Could I bleed and DIE, the house go up in flames and still he wouldn’t notice?
That puts me in mind of our holiday in Mexico three year’s ago. David stretched out on the sofa inside, me on the balcony tapping away engrossed in what I was writing. Seeking the perfect word I raised my head. Black clouds of smoke billowed from the French doors obscuring the room beyond.
Inside three-foot flames licked the extraction hood above the stove eight feet from David.
“David. David. Get out the room’s on fire.” And rushing in I yelled, “Get up. Get help. Quickly. Quickly.”
Struggling from the couch he made for the door, while I slammed a saucepan lid over part of the blaze—my bag of teas, spices, punched the phone to summon help.
“Reception. How may I help you?” The hotel operator drawled. “Now? Would you like someone to come up?”
“Yes. Yes. Immediately.” Was the woman nuts? Nobody appeared.
Then the greatest luck, two cleaners and a maintenance man happening by, rushed in and took control. Within half an hour the flames were doused, the smoke stains scrubbed and cinders thrown away along with the blackened toaster, extractor hood and frying pan. Oh the shame. It was me. My fault. I had switched on the burner beneath a bagged stash of precious teas, spices and special treats brought from home.
tomorrow when I lie alone
when I have no shirts of his to wash
when I clear one plate from the table
when the back porch swings empty
I will wish…
I will weep
stare into the laundry basket
seek his pair of shorts to add
search in vain for his missing sock
I’ll not complain
today I swear
promise only kindness
grumbling no more at
his snoring snuffling sleep
happy to still have him
What’s keeping me up at night?
Worry about finding a good fit for my son in the community. Somewhere where he will be accepted, appreciated, and feel good about working for. It’s a hard struggle.
Worrying about my dad. When he gets the hiccups at night. His really really bad teeth. The fact that he runs out of breath while he talks. How much longer is God going to let me keep him? How to keep from reacting when he pushes my buttons.
What am I really proud of right now?
My son. How much joy and unconditional love I get from him. How he makes life fun. Learning more about Autism Spectrum Disorder so that I can help others understand my son more.
What keeps you going when you feel like giving up?
My son. The joy and love that I get from him keeps me going through all of it. The bad, the ugly, the wonder, the joy, the huge love that I feel for him, all keep me getting up every day.
Carol Spence had been an accomplished artist all her life, first working in graphics, and then as a maker of handcrafted, miniature dolls, which she sold at craft shows and galleries. Three years ago, without notice or explanation, she took exclusively to the canvas, creating work that little resembled her past work. Two-dimensional… (more…)
Rebecca Doig’s Alzheimer’s reached the point of needing constant care when she was only 31.
Amy Norton was diagnosed at only 43.
At the age of just 39, Laura Borrell is one of the youngest people to be diagnosed with frontotemporal dementia, a condition that usually affects older people.
Early onset Alzheimer’s turns children into caregivers for their young parents.
The other day I was in an ER far from home. The woman in charge of triage was refusing to move forward with triage because we didn’t have insurance they’d accept.
The fact that we had insurance and had even gotten pre-approval to go to the ER wasn’t enough — she wanted us to call them back and get paperwork faxed to her. The instructions we’d gotten to pay out of pocket and submit the invoice for reimbursement meant nothing to her. She wanted a fax. But she couldn’t find the fax number.
Finally, I asked, “Is there another ER we could go to that will accept payment in cash?”
Suddenly, we could pay in cash. There was a clear procedure in place and it was no problem.
The next day, I saw the same advice in a comment here:
If I got, “Sorry, I can’t help you.” I asked who could. – Diane Bobinski
When you’re talking in circles — or worse yet, being told ‘no’ over and over again — ask who can help.
It seems obvious, but it’s so easy to forget to do in the moment.
Plenty of times the person saying “that’s not my job” knows whose job it is to help you. But so often they don’t offer up any information you don’t ask for.
This isn’t going to be a popular opinion. I’m not here to get you angry. If you don’t want to read about carees who are emotionally abusive, skip this post.
Why is it somehow acceptable for people who need caregivers to be emotionally abusive?
Some care recipients have had strokes, dementia, or TBIs alter their behavior. Inappropriate behavior with a medical cause is not what I’m talking about.
Some people are just assholes.
My mother wasn’t the best parent, but she took care of me. Not like some other parents. I had a good childhood.
We were never close when I was young and we weren’t close once I was an adult. It was clear she favored my brother, but so many parents do. We did the obligatory parent/child things. Spent the holidays together.
I avoiding spending much time with her, because I found her to be a toxic person in my life. I didn’t need her criticisms of my weight, my choice of life partners, how I raise my own children. I have a happy marriage and children who are doing well and love me, but she was never happy with us. She made her disapproval known, not only to me, but to anyone within ear shot.
If she wasn’t pointing out my faults and failures, she was boasting about my brother. It always struck me as curious, since he’s usually in-between jobs, struggling with his drinking, and breaking up with his latest girlfriend. But this was just something I needed to accept and I did my best.
My brother calls me when he needs money. Or every year or two for bail money. But mostly he and I are both fine to live our very different lives. I wonder what our relationship would be like if she hadn’t coddled him while belittling me, but I do my best not to waste time thinking about it. It’s just a way to understand and accept why my brother and I were never close. He grew up being told I was a failure, how could he feel any differently?
My husband and friends all seemed to understand that while I didn’t want to cut my mother out of my life, I needed to keep my distance. Rather than being a source of support and wisdom, like some mom in a Hallmark card, she was a source of stress and self-loathing.
Few of us have Hallmark card families. I’m certainly not the only one with a strained relationship with a parent. It made me sad sometimes, but it was just one thing in a very full, complex life. I’d learned to accept it, as much as I felt I ever could.
And then my mom got cancer.
I’d worried about what would happen when she got old. I kind of knew it’d fall on me, but I’d planned for this by saving for both of our retirements. I anticipated writing cheques and managing paperwork when the time came. I had a good decade — or three — before I’d need to hire home health aides and companions and whoever else. Plenty of time to save. Plus, she has savings of her own.
Getting cancer at 50 was not part of this plan.
I guess it’s just as well, since she refuses to accept help from anyone but me. Why? Because she says it’s my responsibility.
She tells her friends, her pastor, anyone who asks that she’s just fine. She doesn’t need any help. She tells my brother not to worry about her.
She demands I move in with her. I agreed to stay with her while we was recovering from surgery and going through chemo. I wouldn’t have wanted to go through that alone.
Oh, if only I’d thought about what I was getting into! She turned into an evil princess. She demanded I wait on her hand and food, around the clock.
I knew I would need to do all the paperwork, run all the errands, do all the cleaning, and cook all the meals. I’d signed on for that. I didn’t expect to do them while she screeched bloody murder in the background. She wants these things done, demands that they’re done, but then resents any moment I’m not at her feet, waiting for her next command.
Her doctors said it would be good for her to get out of bed, get some exercise, get back to doing things on her own. She’s not supposed to be bedridden. But the bed is her throne. She’ll only get up on her own if I take that goddamned bell away from her.
It’d be one thing if she were simply demanding. But she’s also mean.
The names she calls me! She’s spent my whole life making it clear that she thinks I’m not pretty enough, not smart enough, not thin enough. They used to come as snide comments and backhanded compliments. Now she just yells at me for being a fat big, an ugly stupid lazy bitch, a useless good for nothing unappreciative child who ruined her life. Because her tea is too hot or not hot enough. Because she wanted the vanilla ice cream with the flecks of vanilla in it. Because I was busy folding her laundry and didn’t rush to her immediately when she wanted me to change the channel.
She gets up out of bed to wake me up to tell me to get her something that was on her nightstand.
All the yelling must take so much energy.
It took me energy to not just walk away. And then I saw her at the cancer center, walking around, laughing, getting up to get things for herself.
Why was I forcing myself to stay and take care of this horrid woman when she’s perfectly capable of taking care of herself?
Yes, as someone going through chemo, she could use some support. But will she die if I’m not there? No. She’ll simply save herself some yelling.
And so I left. Two months of her constant yelling, not letting me sleep, and telling me how worthless I am was enough for me.
My whole life, people have heard stories of my mother — or been lucky enough to meet her — and have reassured me that I was right to keep my distance. She is the classic toxic person all those women’s magazines warn you about.
But now that she has cancer, these same people are giving me a hard time about not staying to take her abuse.
Having cancer doesn’t make it okay to be an asshole. You can get frustrated, be upset, snap at someone in exhausted frustration and fear. But you can’t be mean to people for the rest of your life.
I read somewhere that in Cinderella it was originally the mother who was evil, but they changed it to an evil stepmother later on when the idea of motherhood became sacred. It was no longer acceptable to believe that a mother could treat a child that way.
I’ve spent my life not being good enough for her. I guess this is just one more thing to add to the list: abandoning her to die of cancer.
What’s your life really like?
Really, day to day, nothing to write home about. I am blessed that my husband requires only a small amount of care during the day and my job is close by. So I can run home at lunch and feed/toilet him if necessary. Then back to work, where people complain about their husband not being good enough for one reason or another and I just want to smack them.
Friday comes and I have begun to measure that time so that some of it is satisfying to both of us, not just him. That was a huge step for me since most of the time I was worried about entertaining him during all of my spare time. This is the quickest way to experience burn out.
Now I take lessons, I plan adult activities for myself, etc. So in that respect things are better. Since the stroke in ’09, he has learned to repeat a few phrases but still remains unable to communicate anything but essential needs.
What’s keeping you up at night?
Mostly the need to communicate with someone, anyone, anywhere, about anything. I’ve tried a multitude of different avenues. Most are disappointing to say the least.
I plan to not be alone someday, but there is no way of knowing when that will be. Until then I live with a person who barely resembles the man I was once in love with. Instead I see a person who needs me more than I have enough energy to serve. But everyday I do, and every night I wonder how much longer or will I die before him from exhaustion.
What are you really proud of right now?
Right now I am really really proud that we are mostly out of debt. I’m proud of my children and my grandchildren and that we have for the most part, a good relationship. I’m proud that I can know that I am doing what I am supposed to be doing no matter how stressful or how discouraged I become.
What keeps you going when you feel like giving up?
Humor, Humor, Humor. I love standup comedy, I love to hang out with funny people who can help me laugh at all the problems and even laugh at myself.
Music, as much as possible. I retreat into songs that have deep meaning and that were written during times of sadness but speak of better times to come.
Reading about people who contributed greatly to society against all odds.
Ultimately I pray and ask for forgiveness and for a heart of thankfulness. Both of which I have been given abundantly
“My civil rights are being invaded.” His words.
His custodian, duty demands I, his wife and caregiver, keep him off society’s scrap heap. Fight on his behalf. Protect. Defend.
I learned how at age six in the land of my birth, India. My loving Ayah disappeared. My mother and half-sister too. No explanation. There one day, gone the next. The British Courts dragged me and my baby brother away and into the care of strangers. Months later my father appeared. With my arms wrapped around my brother, we were shipped to England, and dumped abandoned in a children’s home until I was almost eleven. Walnut hard mantling a vulnerable interior nobody, but nobody saw inside my shell. I made sure of that. I am that tough-nut person once again. Have to be.
“En guard, messieurs,” I prepare for battle, brandish my foil.
I pinched my arm. Proved I was ready to fend the missiles aimed at David, me, our space. When I played Lacrosse at boarding school in Goalie position, just the same. Thwack. In terror of injury, I lobbed back the hail of balls before they ever struck my face and padded body-armor. Now, as David’s advocate, the same. Thwack. Thwack.
For two agonized days after a fall, David allowed no EMT near.
Be prepared caregivers, its our loved ones right to refuse resuscitation and may seize the opportunity to exit earth.
“What if your hip is broken, I find you unconscious, have pneumonia, a heart attack… what shall I tell the EMTs? Make you comfortable and leave, or take you to hospital?” I pressed. No answer.
Pain, the clincher, forced his choice.
“Call 911. I need to go to the ER,” David pleaded. Saved his life as it turned out.
Apart from a fractured vertebrae, tests revealed bi-lateral pulmonary embolisms caused from hours of sitting on our recent Trans Atlantic flight—another task for us caregivers: nag your loved one to pump those legs and stamp those feet every hour you’re in the air.
I could work just as well on my laptop in his hospital room as well as anywhere, I convinced myself. And for the next week hunkered down beside his bed for six, seven hours. Just as well. One morning arriving at ten, I found him defeated, slumped forgotten, unwashed, un-unfed in a grubby, un-made bed. New temporary nurses shrugged when I complained.
“He’s supposed to be dressed and sitting in a chair. Doctor’s orders,” I admonished.
“It’s good to have an advocate,” the on-call neurologist approved when I complained. Yeah. But what if I hadn’t been there? The light was already out in David’s eyes.
There’s a battle yet to come.
David’s discharge looming, three-weeks in-patient rehab was arranged—not to the hospital’s in-house unit as I requested, but to a facility for the desperate.
“David failed to meet the necessary requirements,”
The physio therapist squirmed. Tall and blonde, he forced a smile. “He’ll be transferred to a residential home. Yesterday your husband only walked ten paces, and to qualify he must show improvement every day. That’s the protocol.”
“Protocol be damned…. And do you know why he only took ten steps?” I sneered. “Maintenance taped his door to keep him in his room because the hallway was being waxed. I insist he be re-assessed.” One look at me, and they agreed.
With four hours of therapy daily, I watched him claim back his functions over the next week until…
…one afternoon visit ten days into his stay, David’s eyes swiveled upwards, to the window sill, and from wall to wall, “Look — white cats. See them? There’s another and another. What am I doing here in a cattery?”
I froze, frantic. One back-slip and he’d be expelled from the program.
I dashed home, and with a psyc-nurse friend checked his patient portal. Yesterday’s urine tests: abnormal, abnormal—every one. An infection — oh Praise the Lord. He wasn’t bonkers. I exploded in tears.
“You’re mistaken. His tests were normal,” Dr. White-Coat in charge contradicted. “No sign of infection.”
Wrong. Wrong. Did I have to fight every inch to prove it? “See — it’s written—yesterday.” I jabbed my finger at the date.
White-coat disappeared. Returned with his head hung low having double-checked the lab’s report. I’ll give him that.
“I owe you a big apology.”
Granted a reprieve, David stayed. But what about computer-illiterates, those without computers wrongly diagnosed with no-one to speak for them, those unfortunates carted off to end-of-life homes where they should never be?
So toughen up, sharpen your swords caregivers, it’s up to us to fight.
The 20 days in rehab allowed by Medicare was up.
“We want him admitted into a residential home for four weeks. He is not ready to go home.” Not a question, a pronouncement.
“Further therapy…” they said.
“Further therapy?” I snorted, for I knew therapy in the facility they suggested happened maybe ten minutes a couple of times a week if that. And worse as a “fall risk,” tied down to his bed attached to an alarm forbidden to visit even the toilet un-escorted, he’d lose his strength to walk.
“He’ll turn up his toes and die in there. I’m taking him home. Medicare covers twenty home visits — a nurse, physio, O.T., and speech therapy. He’ll get all the help he needs.”
Buttoning my ears, I hinted at the patient’s right to self discharge. Reluctently Big-Chief-White-Coat agreed I could take him home. “On condition you have round the clock help for him, and the caregiver completes an hour’s safety training with the unit’s Physiotherapist.”
Problem. Excepting me — no caregiver. I wracked my brains, remembered a friend. He’d looked after an elderly man for years till relatives hauled the poor chap off to end his days in residential care. No way would I let that happen to David.
“Can you help me?” I begged my friend. “Pretend you are David’s caregiver.”
A perfect actor, he donned a white coat and trained with the physio. Freed from the ward’s clutches stiffling our giggles, we whisked David up, up, up and away. I slipped a couple of tens into my friend’s pocket at the curbside, hugged, and fled.
Home-alone, now what to do? I stared at the box of shots given me by the hospital. “Twice a day for ten days…nothing to it,” they waved me away.
Miraculous fluke: my GP brother-in-law and sister from Oaklahoma happened by unexpectedly en-route to California. Demonstating how to pinch David’s belly flesh and stab, I winced and plunged the needle.
Having him back home was a gift. David had no need to say it, gladness, relief, happiness sparkled in his eyes. I crawled into bed beside him burrowing beneath the duvet. How lucky we were.
“Night, night darling. Sleep well.” We both did.
I look forward to your comments.
Evelyn Corsini and her family allowed photographer Francine Orr to document the final months of her life, to observe caregiving. Orr’s interest was journalistic but also personal: As the caregiver for her father, she had been living the story herself for more than a decade.
Video by Francine Orr/ Video Editing by Bethany Mollenkof
How many times i risked leaving mom alone …she was still capable of walking and her dementia was still not that bad… To get an hour away at the local coffee house located in Silicon Valley’s Mountain View.
I remember being in coffee houses trying to strike up a conversation and when i answered to “what do you do?” with “I am sole caregiver for my mother who has dementia” was brushed off and abandoned like a tsunami warning had sounded.
Yeah…they would not be able to do it…cowards. This was like at my 6 month mark. She was in such bad shape when I got there my sisters thought she would live only 3-6 months. Well that was. THEIR level of abandonment caregiving. I cared for her a dozen years…got her healthy enough for life again. And I did bucket list of concerts and museums and experiences.
I do want to add though that there IS a vein of decent humanity…who will stick by you… I developed a community of care out there at 4 cafes, our hair salon, the supermarket…and eventually the nursing home. The staff at the senior day care center. We were “a thing” once the barrier was broken with staff rushing to welcome us. I made that happen for us.
We were lucky to have as next door neighbors a family raising a disabled boy…and they frequently had playdates at their home with families from their special ed class. Again…these families were rock solid and we fit in.
If you can persist through the shallows brushoff folks…you might strike gold…someone who gets it and who gets the real depth of your character. They are out there!
And in my case I attracted some folks who were top of their field.. Some “world class”…bestselling author…an important VC scout (arranged funding for the two Google guys)… an international world economist… An opera diva. All heavily involved in caring for parent or spouse… a Forbes magazine columnist who happened to be THE federal budget analyst in DC.
However the crushing burden… destroyed me in so many ways.
There will not be a “me” for my old age…nor a million dollar home to liquidate as was done for her nursing home years. (I still had to care for her 4 hours night for 3.5 years).
This GOP heartlessness regime will probably doom any meaningful relief for us… And will throw even more seniors into family care… Or family care-abuse, unfortunately.
Yeah..when does the “glad”start? I racked some upbeat memories… But i am scraping by in reality…renting room with boxes stacked around me. It seems karma does not kick in…until the next lifetime.
What keeps me going, and it is the hardest task I have ever had, is knowing that true love is rare. Deb and I met in 1984 when she was 28 and I was 33. We married a few months later. We had both had prior marriages and were blending families of 2 kids each. We knew it would be rough but we made a wonderful life for our kids and each other. She was diagnosed in 2004, in a wheelchair since 2010, and is now approaching what would be considered end stage MS. Her disease has never had relapses. She has what is clinically called “primary progressive” MS. My own physical ability to care for her is getting strained and I worry if I can finish. However, the emotional strain is by far more difficult. The key to going forward is not looking too far in the future. That is overwhelming.
I am proud that I have been a good and faithful husband and am honoring that vow “in sickness and in health”. I have had friends and family who have been supportive and encouraging. When I was young I knew a woman with MS whose husband had left her. She was a wonderful woman and I felt like that guy was such a creep. Looking back now what I feel about him is that he may have missed the best years of their marriage. Sure the sex would have gone but he would have had moments of love and intimacy that I can now say are some of the most beautiful moments in my life.
NEW PROVIDENCE — As Geri Payawal Shepard walked with her son to Mount Sinai’s cancer clinic in Manhattan, families with young kids buzzed around her. She stared at them for a minute, trying to figure out why so many people were outside. Then, it dawned on her: For most families — those whose lives hadn’t been… (more…)
I first heard of Huntington’s Disease when I was 20 years old. A frantic, hysterical phone call from my mom told me that she was certain that she had an incurable, genetic disorder called HD that involved the slow deterioration of cognitive thinking, muscle coordination and the appearance of behavioral and psychiatric problems. The disease itself is a mutation of a certain gene that can be inherited by a parent. If your parent had HD, you have a 50/50 chance having the mutation. If you do not have the disease, your children or children’s children will never have it either. There is no cure. There are no proven treatments. The disease itself often starts out with subtle mood swings or twitching and progresses to a total loss of independence.
My mom had inherited the mutated gene from her mother who passed before I could remember her. Her brother, my uncle, also inherited the gene and became to experience symptoms 10 years before. His method of coping was ending his life. I had known about the suicide, but not the reasoning.
If you are reading this, you are probably asking yourself why I had never asked about how my grandmother died or why I had never heard any stories about her. Or, further, why I had never asked about the uncle that I had never really known. The answer is that I was a child. And children are selfish. And that’s okay. The secret was something that my parents kept from myself and my younger brother to shield us. The thought of my mother carrying around the secret of the disease that tore her family apart, makes me feel sick.
As she continued to cry through our phone conversation, the full story began to unfold and I understood that she had known for her whole adult life that this may also be the end for her. And, not only was she affected, but also my brother and I had a 50/50 chance of inheriting the gene. There was the other punch in the stomach.
The news itself put me into a fog that I couldn’t escape. I was a junior in college in Upstate New York. I was used to worrying about tests and internships and figuring out what I wanted to be when I grew up. I told only a few close friends and then tried as best as I could to go back to regular life.
A few months later, my parents drove to Mass General to see a specialist. The visit was followed by a happier phone call from my mom telling me that the specialist did a few tests and didn’t see any symptoms present! We were thrilled! I don’t remember the words that were said, but as I could remember it, we were certain that this meant that she didn’t have Huntington’s! And I was free to live my life and so was my brother. And that this scare was over.
Again, if you’re reading this, you’re probably asking yourself why I didn’t ask any questions about the testing itself. Or why I was so certain that this initial visit meant that this horror was over. In all reality, I can’t be sure if I so badly wanted HD to go away, that I created the idea that she didn’t have it or if she was the one who so badly wanted it out of her life that she was the one who was in denial. Truth be told, she didn’t get the genetic test at that visit. Even though, at the time, she was symptom free, that didn’t mean the disease wasn’t in her body.
A few years went by and I moved to Los Angeles to work in the entertainment industry. My life that my parents had fought so hard to give me came back. I bounced from job to job and felt under-appreciated and underpaid and all of the things that you are supposed to feel in your early twenties. I dated unsuccessfully and, when I wasn’t expecting it, fell in love with my now husband.
At the same time, my brother had gone away to college and left my parents alone in the house. The distance between them grew and they realized that, without us kids, they didn’t have much in common anymore. My mother, who had struggled with depression, fell into a deeper depression and withdrew from society. She had trouble sleeping. She became obsessive with researching politics and green lifestyles and hid herself in the internet. She had difficulty focusing on tasks, planning, organizing, prioritizing. She became impulsive and lashed out at the world through email. To her, everyone was out to get her and they were all in the wrong. And then, when confronted by my father, she decided that was the last straw and left him.
She landed at LAX the next day and in the following years she bounced from Arizona to Hawaii to Orange County and, finally, to San Diego. In my head, I rationalized her erratic behavior to that of a midlife crisis. After all, she spent her teenage years taking care of her own mother who was dying of HD. She never got the college experience or studied abroad or had the freedom like my brother and I did. She must have felt trapped. I thought that maybe this was her chance to explore and, as many people do when they go through a divorce, be selfish.
When she moved to Southern California, we got together every month or so. She had just come from living in Hawaii where she was eating healthy and exercising and had a glow that only Hawaii can give you. She looked great. Some visits she would be the same loving mom that I grew up with and some she was a different person.
In 2011, S and I got engaged and life turned upside-down as it does when you are planning a wedding. Engagement parties came and went. As I watched my mom interact with my new family and friends, it became more and more apparent that something was very wrong. She lost her balance sometimes, she walked with wide, awkward steps and had difficulty with eye contact. She had trouble with conversation. On the other hand, my mom has always been a bit shy around new people. I was too preoccupied (and deep down probably too scared) to admit out loud that anything was wrong. It was easier to be wrapped up in my own happiness and pretend that she was just a little clumsy.
The months leading up to our big New England island wedding were stressful. My mom seemed disinterested and distracted. Most visits began with tears because I got agitated when she was late. She would tell me she got lost or lost track of time and would tell me I was being too judgmental. I would tell her that I felt abandoned and felt she didn’t care about anyone but herself. And then she would cry because she loved me and my brother more than anything and couldn’t stand the thought that she was hurting us. We’d make up. And then it would start all over again.
Our wedding day came in July of 2012. Even though it was the hottest and most humid day of the summer, it was absolutely perfect. My husband is amazing and supportive and truly, my best friend. And I couldn’t be happier. The weekend was the first time since my parents split up that they saw each other. I will never be able to thank them enough for acting cordial and putting my feelings ahead of their own. They even held hands as they exited the ceremony (I never asked them to do that). Not only that, but my talented, incredible brother had graduated from an Ivy League school the month prior and rejected an incredible opportunity to teach in Korea in order to make sure he could be there for me on my wedding day. I will never feel more loved than I did then.
After the wedding, we adopted a little doggy and unpacked all of our gifts and life went back to normal. At the same time, my mom started sending manic emails accusing my dad and her family of horrific things. As we settled back in, the feeling that things didn’t seem right came back. The turning point was when one of my cousins called me concerned about my mom and brought up the possibility of Huntington’s Disease. I, after so many years, still believed the story that I had told myself that she was tested and she didn’t have the symptoms. But, in the days since that conversation, I looked closer at the symptoms of HD and, each day, saw how closely they aligned with the ways that my mom had changed in the last few years.
And then it clicked and I lost it.
Asking my mom to get the test was one of the scariest conversations I ever had to have. I told her that we had babies on our mind and I wanted to be sure that we were in the clear before we brought any at-risk babies into this world. That was true, but only part of the story. She was mature and understanding and immediately agreed to take the test. After she so easily agreed, I started doubting myself again. She seemed so rational and so sure she didn’t have HD that I started to believe it myself.
We scheduled the appointment and braced ourselves.
What’s your life really like? So many caregivers are out there feeling like no one understands what they’re going through…but we suspect quite a few of you are going through similar things.
February 3rd marked a year since my husband passed away.
Life has been very different – I don’t have the daily battle on my hands with so many things, tube feeding via peg tube, bathroom messes, driving him to his appointments (he could no longer drive), arguments, dressing, giving pills, being bashed behind my back. Being with him in the hospital, doctor’s appts. (where I could not tell the truth because I had to go home and be with him). Therapists were under the impression that he was doing better than he was – he could bullshit with the best of them. His walk and his talk was fairly good – but his perception of things, his abilities to do things was never the same (stroke in 2013 at 64 yrs old).
What’s keeping you up at night?
While caregiving I had to be a light sleeper just in case he needed to use the bathroom instead of the urinal.
He would sleep walk quite often – he would rearrange things in whatever room he ended up in. Almost burned up the house heating up his barley bags in the microwave – had them heating up for too long – he could not use a heating pad because he would burn himself and had previously.
Or in case anything else came up overnight.
What are you really proud of right now?
How much I learned about nursing a patient, being a caregiver. Even showed nurses in the hospital how to handle hooking him up to the feeding tube.
I learned to read his body – knew when he was coming down with pneumonia or that his energy level was down – I perceived a lot about him from being with him every day.
I was mostly responsible for keeping him alive for the several years of his life.
Hanging in there until the end – I even considered divorce because of how mean and nasty he was to me – at least while receiving acute care at two different care facilities (due to silent aspiration pneumonia numerous times), he treated staff, his daughter, and best buddy the way he was treating me – amazingly, they asked why he was doing that, never considering that was the treatment I always got at home with him, he was now sharing his meanness with everyone else!
Knowing I could not change him – he began drinking whiskey (he was a former alcoholic) to calm him from the ‘familiar’ voices he was hearing.
I discovered that I could work from home – no matter what interruptions I experienced, I could stay focused and get my work done via remote connection to the office.
What keeps you going when you feel like giving up?
When considering a divorce I had a discussion with my Pastor – he understood what I was going through on the caregiving – he had cared for his Mother during her decline. I don’t know if it was as one on one as mine was, but he understood the mean and nasty aspects of the one being cared for.
My Pastor asked me if I still loved him – and I had to admit that I did. That’s why I continued to hang in there.
And I am a person who has Hope – a lot of hope. Which also involves Trust in God, Jesus, and the Holy Spirit.
Also, being able to talk to friends who understood what I was going through. Being able to share, being understood. Caregiver websites have helped through the years also.
Catherine L. Ford-Barbiero
I don’t recall when Parkinsons shape-shifted husband to patient, wife to caregiver. Was it the day he held up his underpants, asked, “What do I do with these…?” The day I re-taught him how to stand from sitting, use the TV remote, or the day I first wiped dignity from his backside and flushed it away?
In the mirror two heads held my gaze. I peered closer. In one face I saw me, his Liz-darling. The other, a crone I didn’t know.
“Can’t hear a word. Speak up,” crone shouts craning to hear his whisper. “Use your voice…aaah, ooo.” Crone models an intonation exercise.
“Hey, David your mouth,” she insists tapping her chin, a reminder to close his.
“Sit up,” I hear her mutter when he keels sideways in his chair.
“Use your fork… Open your eyes…”
The orders familiar, we all know how they go. Momma-dictator ordering not a child, but a grown man, my David whom I vowed to honor and obey, to love for the rest of our lives? I cower beneath the verbiage — the same words with which I tamed my children sixty+ years ago, when… a single mother with a nursing baby and deaf toddler whose frustrated screeches stripped my brain. I owned a piano then, banged Rachmaninoff’s Funeral March from its ivory piano keys, sedated myself with Valium and a glass of red-too-many. Bad times. No dark night I want to visit again.
My piano long gone, art studio devoid of clay, the New Mexican soil too hard to dig, activity-till-exhaustion is what sedates — and our strict one cocktail happy hour, the hour we socialize. Well that’s the idea.
“It’six. What will it be tonight, my love? G’n’T? Tequila?”
The newscaster interrupts, babbles on. No matter, “Cheers.” Our glasses salute.
Next minute his glass tilts, drenches his shirt, pants, the chair.
“Not again. How many times…? I’ve told you, put your glass down on the table between sips…” My yack-yack strikes up again. I flip-down the footrest, drag from my chair, stomp off for a mop, wipe him down, say sorry darling, it’s not you I’m shouting at,
“I JUST WANT ONE MOMENT’S PEACE.”
Sign me up for a school for caregivers. Hey bloggers, how come one doesn’t exist? Are you, like I am in desperate need of tuition on conflict resolution, the delicate balance between gentle helper: versus bully, custodian: wife? Bound, trapped in a body in sh*t working order, reliant on me to lift cup to lips, fork to mouth, punch buttons on the TV remote, bossed and manhandled, how does David stand it? Well, he has to poor bugger, doesn’t he? No choice. That’s on bad days and not every day is bad…
Not BAD/GOOD I correct myself, a DOWN day, an UP day. His changing states at a flip of some invisible switch floors me. Add that how-to lesson to the syllabus, please.
…and when he was up he was up, and when he was down he was down, and when he was neither up nor down, I hum. How will I find him today?
Crises willing, me-with-me-alone-time is a few minutes each morning before breakfast. The second I inhale my incense stick, light a puja candle, tap three rings to reverberate my singing bowl, tranquility settles. My meditation cushion placed just so, I watch dawn strike Santa Fe Baldy’s distant mountain peak. Birds like the chants I play, it seems, for I see them still on the bush outside the window, heads cocked. Twittering. Perhaps, like me, they gather their intention for the day and summon strength enough to follow through.
From a deep space, I feel the spirits of who it is I really am, who David really is, and see our earthly struggles as no more permanent than Hamlet’s at London’s Globe. I ponder the power of words, the tone in which they are uttered. I swear to let my speech pass through three gates before I ever speak. Remind myself, “…gentleness, patience, kindness.”
“David is a perfect soul I have the honor to serve,” I affirm. “… to treat as I would the Dali Lama, the Queen of England, Mohamed Ali or Pope Francis.”
Behind closed eyes, I draw in the beauty of the man I married. The great love we share. I am his. He is mine.
Calm settles for a few hours, a few days, a week or month. Whistled code-talk, singsong-messages, and love-hugs remind of happiness we share as man and wife.
Oh, dear, my finger hesitated over the keypad. SHARED? SHARE? Is happiness now relegated to the past? I am grieving. I am in mourning.
My son was born two years ago. Nothing pains me more than knowing he will never know my mom for the person she was my entire life. That someday she may not know who he is at all, when one of her biggest dreams was for a grandchild, is a terrifying and unsettling thought. Yet it also brings me joy to know how much his presence on this earth has helped her. She always says that having him in her life makes what she is going through so much easier, and that she hopes everyone suffering like she is has a baby in their life to love.
Lost, anxious, depressed, afraid, angry, confused, and overwhelmed. These are just a few feelings that I am sure my mother faces on a daily basis. It saddens and enrages me that this is happening to her at the young age of 65. Accompanying the huge range of emotions she is dealing with are the emotions of her loved ones hoping to provide her with the best care possible through this process. It is hard on us all.
At this point, you are probably wondering what exactly it is that she is going through. Unfortunately, our family is wondering the same thing. For the past few years we have been slowly watching my mother’s decline. It has been scary, painful, and frustrating to say the least. It has already been a long journey for my mother, father, brother, and I, and we are still looking for answers and an accurate diagnosis. We don’t yet know if it is psychological or neurological, but there is no doubt that something in her brain is not functioning the way it is supposed to. Words like “dementia” and “Alzheimer’s” have certainly been thrown around.
It started out with some garbled speech. She couldn’t find the words she was looking for and stumbled over words that she did know. We then brought her to our primary care physician to rule out a stroke. After some testing, they could find no reason for her symptoms. This brought on a slew of appointments with neurologists, psychologists, and psychiatrists over the last few years. Tons of tests were done including CAT scans, PET scans, a spinal tap, and more. We are currently awaiting results of some more specific frontal lobe testing. She has also tried many different medications to no avail, and we are still scrambling to find the right fit.
During this time she has had periods of stagnancy, where she would go without any decline whatsoever. This gave us hope, because we were able to get acclimated to her – and therefore our – “new normal.” There have also been periods of rapid decline, where she is suddenly unable to do multiple things that she had just been doing daily.
Currently she has trouble with her memory, reading and writing, and performing daily tasks that the average person can do without much conscious thought involved at all. What’s troubling is that she is either aware that she is forgetting or having trouble, which makes her sad and frustrated, or she believes she can do something without help, which can end up with her feeling embarrassed or even getting angry with us.
My mom was always the woman who took care of all the children in the neighborhood. Other parents would come to her for advice, and whenever a child needed help in school, got hurt playing outside, or just needed someone to talk to, she was the first person they came to. Throughout her lifetime she also helped many adults by offering them a place to stay or giving up her time and resources to make sure they were taken care of. She lived a selfless life. It isn’t fair what she is going through.
Still without a sure diagnosis, we don’t know whether there will be treatment or a cure for what she is dealing with, or if she will continue to decline until the time she is no longer with us. As difficult as it may be to lack the answers we so desperately crave, the uncertainty leaves room for hope. It can be easy for me to get caught up in the stress or self pity that accompanies caring for a sick parent. I feel that we should have had much more time before anything like this happened. I mainly hope that I can be half the woman she raised me by example to be, and that I can support and love her no matter where this journey takes us next.
By: Rachael Mariani
My name is Rachael Mariani. I am a 24 year old stay at home mom and the author/owner of Uninvincible Mom, a motherhood and family lifestyle blog that is set to launch soon! My goal is to empower others in their imperfections, and to promote quality family time with an emphasis on the children.
Welcome to the world of caregiving.
It’ll be hard, but it’s worth it.
You will never ever regret being a caring caregiver. – Debra Taylor
It’s all about love
Remember to love unconditionally, when it’s a family member. – Mimi L
Don’t be afraid to ask for help. Take any and all offers – they eventually stop. – Narelle
The only advice is to reach out and ask your for help. If you don’t and it becomes a long term as it has with my family, people back away, be open and honest that you need help. – Maggie
Remember self care
Take good care of yourself too. Find time for yourself. It can be something as simple as reading a book. Never forget yourself. – Mimi L
Don’t forget yourself
It is important to maintain certain projects that gives one a since of identity. Why? Because so often as the journey continues it is easy to lose sight of who we are, or were before the all consuming responsibilities are upon us it is too easy to lose our sense of purpose. It is best too if these projects include some sort of creativity. Why? Because a wise man charged with running a school for children with disabilities once said to his staff that when doing such a job as caring for another, creative efforts provide the in breath and the caring effort is the resulting out breath. – Linda
Make decisions together
As a veteran caregiver of both mom with dementia and spouse with MS, patience patience patience. Breathe and try to understand their state of existence. Think through to solutions that work for everybody. Ask before you make decisions about their care. – Joanna L. Brandon
Sometimes you have to be forceful
Be proactive, especially where your parents are concerned. We’re taught and experience trains us to follow their lead and defer to their wishes, but there comes a point where everything they taught us comes majorly into play. It’s a role reversal and we chafe against it, but it must happen before a disaster dictates the when and where. – Kat Drennan
You can’t argue with ALZ
Caregivers have to adjust, adapt, and accommodate because you can’t teach, train, or tell. Momma was on her own strange journey. I could not go into her world, but I had to survive it in order to help her. – S
What is it really like to be me…
As a 66 year old looking after my 90 year old dad…it is not nice to be me right now, sadly.
The year my hubby retired we had such excitement to start our travels and new journey. We got one trip in and came back to the news that dad was moving in with us.
That was 5 years ago and our life changed drastically…have not gotten to do the traditional things with my kids and grandkids…have not gotten to travel.
I have 2 brothers and 6 other sisters…only one brother helps out but he still works. We finally had to put dad in a nursing home on Dec 28th 2016.
So thought it might be better, but dad continues to not like me to be happy…every time in the last 5 years we tried to go away he got upset and made himself seriously ill and l could not go or had to come back.
Trying to play tough love now with him…l am up half the night trying to figure out how to go away and enjoy myself now that he is in a home…2 weeks ago l went 3 hours away to babysit my grandsons…he did it again and the nursing home was calling me all the time…l did play tough love and not go back. Sleep is terrible…l was told because he plays these games and destroys his body and kidneys by not eating or drinking till l get back that most likely l will not be around when he takes his last breath if l decide to go away..but they said go…yeah right, that is hard decision to make.
As soon as l come back he starts to eat and drink again.
Nobody else in the family hardly visits or will step up to the plate…l handle everything now.
I am tired and angry and feel guilty for being angry too even though he does not have to be like this.
I am angry at the rest of my family also…but they just do not care.
So my life l feel is ticking away while l am stressed and getting ill myself now…any suggestions will be greatly appreciated, but l have probably heard them all.
l am his POA so l make decisions my brother is POA also but leaves most of it up to me…
Off to visit him right now before storms come in.
Before my sister was struck by frontotemporal dementia, her wishes were very clear. No feeding tube or breathing machine if she became profoundly incapacitated, without the prospect of recovery. No aggressive life-sustaining measures. And she wanted to stay in her home, all the way through. But that was then, when the prospect of becoming infirm was… (more…)
What’s caregiving really like for me?
Well it changes from day to day and hour to hour sometimes.
I’ve been married 56 years to Rick on March 16th. He has many health issues… stoke, open heart surgeries, infections, etc. He is homebound right now.
Sometimes I feel like there isn’t enough of me to go around. I’m tired, exhausted, but most of the time I’m happy and we have a good life when he is not in the hospital with major issues.
I am a poet, so I still squeeze in time to write and put my stuff out there.
Right now hubby is sleeping in a recliner due to congestive heart failure… they have put in a foley to try and keep him out of the hospital yet again… so I am on call and don’t get much rest. I’m constantly trying to help him get comfortable. Always have my gloves and wipes handy and all kinds of powder and creams… I give shots for diabetes three times a day.
We have home health right now for OT and PT and nurse. We also have a mobile physician for primary care.
I don’t feel isolated as I have family close by that help out when not working… also we live in a motor home in an RV community so lots of neighbors.
They all have their lives though… we keep in touch with friends on Facebook. Hubby has an iPad so he enjoys that.
There are lots of follow up phone calls from pharmacy and nurses, etc.
I feel like we have settled in after 10 years of caregiving for hubby.
Before that I took care of my parents and two aunties and Ricks mom.
In between and before his stroke we had some wonderful travels to the beaches around Florida. We walked the beach and fished daily. Met lots of interesting friends who we keep in touch with.
We both feel like we have had a good life.
My morning ritual is:
- Krill oil
- Co Q ten
- A vitamin shake from Medifast
- Two hard boiled eggs or oatmeal
- Orange juice
So far I have avoided any winter cold or illness, which I was exposed to daily as hubby was in the hospital and rehab from September to mid January. It’s very exhausting to keep up that pace of visiting daily.
Then when he was almost ready to get home they over dosed him on morphine and he almost died… that’s another story. So he is fighting his way back from that. It is being investigated by the state.
To better get what the hell it is I’m sounding off about, I’ll set the scene from fifteen year’s ago before the Parkinsonian sea engulfed us, before my husband declared himself trapped alive inside a sinking wreck.
I glanced up. Sitting in our living room, the fireplace spluttering pinon sparks, I moved the fireguard against the adobe orifice and settled back. Newsnight, a program my husband loved, glued him to the screen. Words tossed tired leaving the great big world unchanged. Not ours, though. Ours morphed that night, the night I noticed…
My husband David’s cheeks smooth as the TV screen, the corner of his lips devoid of curl, his eyes saucer round, nodding at the key points being argued in the interview, I assumed he was taking it all in.
Charlie Rose leaned forward, bushy eyebrows pulled close and down mantling personal thoughts. A smile disrupted the furrowed lines demarking his cheeks. He pushed his lips forward. It was easy to see Charlie was engaged. But my husband — was he engaged? His expression gave no hint. I picked up a cashew fragment from my lap, cast it with the doctor’s words into the flames. “Swaha,” I sighed. “Here’s to all we have this minute.” The fire-log like our future incinerated leaving only the present.
David looked the same as he did yesterday, the same sweet way he’s looked for the years we’ve been together, the same physically since his ten o’clock doctor’s appointment the previous morning. (Was that only thirty-six hours ago?) David’s face: Charlie Rose on the box. I looked from one to the other. Studied the contrast.
“You have what’s known as a Parkinson’s mask, an early symptom of the disease.”
The doctor’s words un-rumpled a list of symptoms…joint stiffness, tiredness, micrography, tremor, fears we’d scrunched inside. For a couple of months I noticed his voice. Its new sexy huskiness. And teased him. Then not so long ago, speed walking our favorite circuit behind his house, he stopped, waited for me to catch up.
“My left arm won’t swing,” he complained. “I wonder. Could I have I had a mini stroke?”
Next day at the doctor’s office, the doctor clicked his ballpoint pen. On. Off. On. Aligned the missile shape of it parallel between the two top lines of his notepad.
“You have Parkinson’s disease.” The clicking of his ballpoint spiked the silence.
The three syllables “Par-kin-sons” skimmed the surface of reality and sank beyond my conscious thought. The doctor’s words were just sounds, nothing meaningful about them. After all, the sky still shimmered cloudless, and the smudge grazing the horizon too far distant to define. I was too shocked to ask what lay ahead. Stepping from office to sunlight, we held hands, not talking. I closed my eyes felt the warmth of the sun.
Bloody ironic, David a doctor. All those nights slaving in the ER cranking extra dollars to live the poster retirement under a palm tree somewhere. Now just when he was free…
I didn’t burst into tears then. It took a week. Walking one early morning along the arroyo behind our house, I brushed against a cactus. The cruel pain of its barbs gave me reason. Broke my reserve. I wept and wept. If David cried, he cried when I was not about.
Caregivers, did you stiffen your spine like me on hearing your partner’s diagnosis? “Pointless dissolving into a crybaby…pull yourself together, girl,” I admonished myself. “Face what needs facing and bloody well get on with it.”
I didn’t admit to my feelings. I couldn’t. I didn’t recognize the nothing I felt covered emotions I was not strong enough to handle at that time. It’s a British thing. Denial. Our way of coping.
“Let’s take a trip. Go on an exploration.”
So we hiked into the desert silence of White Sands and lay together beneath the Milky Way and swam the waters of Elephant Butte. For two and a half months we toured Sri Lanka, and clocked ourselves into a Kerala nursing home, South India, to undergo a month’s Ayurveda treatment, then took six weeks in a half-built ocean resort recovering. It was a beautiful time, we agreed, riding waves twenty feet high in the Indian Ocean, strolling the Malabar coast hand in hand, eating vegetarian. We never looked or felt so healthy.
The future, not yet existent, nosing into the past kept us warm and down-coated. Nesting, we called our “do-you-remember-when-we…” stories.
But “Par-kin-sons” was there, three stones lying below the surface. Dark lumps on the pristine sand, one, two, three… I could see them through the water. Behavioral and physical changes like his indecipherable writing, more frequent stumbles, fading memory, curving posture, loomed unavoidable.
What David felt, he kept to himself.
Things have changed a lot in the US during my grandmother’s lifetime.
My grandmother retired before I was born. Usually the people I remember as having been “old” during my childhood turn out to have been slightly older than I am now. Not so with my last remaining grandparent, who looks quite old in photos where my parents are younger than I am.
I used to tag along with my dad to her house multiple times a week, making sure everything was taken care of. She could live alone, but she needed help with little things. She’s never been a fan of children and I can’t imagine I was much help, so I’m sure no one really cared when I stopped going.
Why did I suddenly refuse to visit my grandmother? I was so angry that she knew who my sister was (the pretty one) and had not the slightest clue who I was (the nerdy one), even though my sister visited her only for required family occasions. The first time she forgot who I was, everyone brushed it off. I boycotted grandma.
It was nearly 20 years before anyone diagnosed her with dementia. The amount of help she required each week grew gradually, until it was clear she needed my father to move in with her.
When my grandmother was working age, it was unusual for a woman to work. The elderly and infirm were expected to be cared for by the wives who looked after the children. The daughters were expected to help.
Now only the wealthy can afford to survive on a single salary. Even those who could afford to have one spouse stay home often have ambitions beyond their homes. As the pay structure and societal expectations shifted, the rest of the world failed to shift to accommodate the needs of childcare and eldercare.
When Social Security was unveiled, the life expectancy of an American was 62 and payouts began at 65. Today, most people live to see 80. No wonder the system is always on the verge of collapse — it wasn’t designed for this.
More and more people rely on Medicare while fewer people pay into the system.
With many parents requiring care starting in their 60s, most people will spend more years providing eldercare than childcare. Children spend hours a day at school, elders require 24/7 care with little financial support.
They’re expected to support themselves, save for retirement, put their kids through college, and support their parents. People are collapsing under the weight of these unreasonable requirements.
As soon as I was living on my own, my parents eldercare responsibilities intensified. And now they’re providing childcare for their grandkids while still taking care of their own parents. So much for an empty nest. While the other elders in our family have passed away, grandma still needs 24/7 care.
My parents have been fortunate: they’ve made it through the financial and emotional gauntlet of eldercare with their own lives largely intact. They had jobs that provided the flexibility to provide eldercare, often for multiple people at a time, without having to give up an income. So many haven’t.
Our lives have changed. It’s time our system for eldercare changes, too.
“Nothing can prepare you for the loss of your child”
I’m positive that this is true. I’ve heard these words from so many parents who have lost their children. Even though I haven’t experienced this loss personally I know with everything that it is true. There is absolutely nothing in this world that can prepare you for the loss of your child.
There are many different ways people grieve, and for many different reasons. Grief doesn’t always follow losing someone we love. When my son was diagnosed with a fatal disease called Canavan I realized in hindsight that I went through all the stages of grief. I had suffered a profound loss. Even though my son was still with me I was grieving the loss of the heathy child I could never get back.
After coming to terms with the diagnosis this feeling of grief eventually faded away. But grief comes in many forms. There is something called anticipatory grief which can affect parents like me who have seen so many others in the same situation lose their children. We mourn with these other families and silently wonder if we’ll be next.
Even though I know there is no way to mentally prepare for losing my son, I still can’t help but try. There are endless poems and blogs dedicated to child loss. And as my son grows older and I watch more children lose their battles, I always read everything people share about losing their children. I read their words because I feel terrible for their loss and I want give them the chance to be heard. I also read the words of grieving parents because I know that one day this will be my reality as well. I can’t even estimate how many times I’ve read something about someone else losing a child and had to stop because I couldn’t finish it without breaking down in tears. The agony and sense of loss is palpable. These parents are in so much pain and they are so articulate that I can actually feel every word they have written deep inside my heart. This is empathy, a typical thing to feel when you read something so emotional that it moves you and you can feel something very similar to what the author is describing. This is very different from anticipatory grief.
Anticipatory grief is the experience of grief before an impending loss. This is a different form of grief and it can become crippling. How can we possibly go on day to day caring for a child we know we are eventually going to lose and not be affected emotionally? I have absolutely no idea, this is something that I struggle with on a daily basis.
I have been raising a child with a life limiting illness for over nineteen years. I know a lot about so many things that we as parents of medically involved children become experts on, but not this. I can not seem to escape this feeling of dread. There are times when I can actually feel the aching emptiness of not having my child.
My son almost lost his battle with Canavan disease this winter. This was the first time he’s been really sick. I watched him turn blue and stop breathing on half a dozen occasions. I begged him to fight, to stay with mommy. I verbally rescinded his permission to leave me when his earthly struggle became too much for his little body to bear. I told him he was not to go with any children that were there as angels to guide him to heaven. I told him to run from the angels, to run as fast as he could the other way. I begged him not to leave me.
When the time came to let him go I couldn’t do it. I’m wondering if I’ll ever be able to. I think about this now every single day. I have to stop what I’m doing at least once a day to cry and mourn someone who is still alive. This can’t be healthy, but I can’t escape this feeling of anticipatory grief. I feel like the grim reaper is following my child around. I got much too close to death during that illness, I felt him in the room with us. I will never be able to unsee my child teetering on the thin line between life and death. Some things change who we are fundamentally, and there is no going back to who we were before.
I don’t really know how or why my son survived this illness, but he did. Everyone agreed that this was a true miracle. But how many miracles can we expect? I’ve been gifted with more time. I know that I should make every moment count, but that is easier said than done. I already know I should be focusing more on the time we have left, living in the moment and all that. But sometimes I get consumed with this grief and instead of trying to escape it I welcome it in. Why would I do this? I think to try and prepare, even though I know that is impossible. Our mind has it’s own defense mechanisms to try and prepare us for something emotionally devastating. I think that feeling anticipatory grief is part of something to prepare me for the day I will eventually bury my precious child.
I’m not sure if I’m supposed to talk about these things, these horrible feelings. But I do know that ignoring it won’t make it go away. So I try to take the mystery away, it has a name, anticipatory grief. It’s a real thing and I know that I can’t be the only person who feels like this. Each day gets a little bit easier. More time and distance between the hospital stay does seem to help. And I do know that every single second with my son is a gift not to be taken for granted. So feeling anticipatory grief has been relegated to the times when my child is not at home. I get all the feelings out of the way so I can focus solely on him when he’s by my side. This is a new learning curve for me and I am still finding ways to cope with this feeling, a feeling that can be destructive if I let it. But I won’t do that. I will love my son with every fiber of my being for every second I have him with me and continue to memorize every detail of how he feels in my arms. I know that I need to store up these memories because this glimpse into the future is a reminder to me that our time on this earth is fleeting and we need to make it count.
As I continue to process what it means to be a caregiver and meet countless others who share similar experiences, I can’t help but see a badge of honor adorned on their chest. No, it is not a medal bestowed to us by other mortals, but a badge bestowed from a higher power. You will actually never see this badge, as it is tucked securely behind flesh, blood and bones; the heart.
Caregivers have a heart others wish they could obtain. An unbounded heart, spilling an endless flow of love toward the ones they care for. The terrors of caregiving are difficult for most to face, a reason why we, as caregivers, can feel shunned from the rest of the world. But we don’t turn away. We walk right into the terror with no idea why and no idea how to fix it but knowing we are called to do it.
When I meet another caregiver, a sense of solidarity overcomes me, like I have found a lost comrade in a war we cannot win. I feel connected. We share our metaphorical scars as a way to connect on this event in our lives. I can’t get enough of hearing the stories of others and sharing in the common experience we all must face.
I wish there was a way for us to identify ourselves to the world, to remove our hearts from our chests and wear them outside ourselves so that others can see what we are. As I see people in my daily life, I wish I could see this badge, flag them down, share our battle scars and embrace in a warm hug. Don’t be afraid to share your struggle because there are brothers and sisters who share in this experience and they are here to help. We are not alone in this fight, and though we may not win, we will not be defeated.
I’ve been watching our Facebook page get taken over by a bunch of school yard bullies over the past few months. It’s a pretty confusing thing to see for a support group.
Living in Florida, I’ve gotten an up close and personal view of Trump lighting people up. It’s great to see everyone so excited about the future of the US.
It’s less exciting to see my otherwise lovely neighbors start talking about Liberals like they’re less than human.
Given that Liberals and Conservatives share the same DNA, I imagine they’re doing the same thing over in their own Facebook bubble, although I don’t see much of that.
One of the great things about doctors offices is they don’t ask about your political affiliation before they treat you. They just treat you, because any good doctor doesn’t care what bumper sticker you have on your car.
Caregivers aren’t bond by the Hippocratic Oath, but joining The Caregiver Space suggests you’re here to talk to other caregivers and support each other.
That’s suddenly hard for people, because everything caregiving related has become a button unleashing a political firestorm.
I know these are all words that are just asking for trouble: Obamacare, repeal and replace, Meals on Wheels, Medicare, subsidies, tax credits, health insurance, provider network, work requirements…the list goes on. These words turn people into internet trolls and bullies.
The problem is, how do we talk about our lives as caregivers without mentioning them? I don’t think we can.
But there’s a solution.
We’re all old enough to remember a time when complaining about copays was just that — complaining about copays. Not a commentary on the President of the United States or a declaration of our political feelings. It was a commentary on our personal experience. I would complain about copays and someone else would say agree that they really add up and it stresses them out, too.
We can still do that.
If someone says they’re worried about changes to their health insurance, I can respond to another caregiver saying they’re worried.
If someone is stressed out about how they’re going to pay their kid’s medical bills, I hear that they’re stressed out.
If someone is upset because they tried to sign up for a social program and they got placed on a waiting list, I can relate to feeling frustrated.
If someone writes a post about how they wish the rules for FDA approval would change and I completely disagree, I can say that I disagree without going on a personal attack.
Some people have a great experience with the VA, some people don’t. That doesn’t mean anyone is wrong, it means they had different experiences.
We all know this already. We’re polite to people we disagree with all the time. I disagree with my husband about things. My parents and I seem to have opposite opinions about pretty much everything. And we still love each other. I still support them through all sorts of things and they support me.
We all have enough stress in our lives. We come here to share our ups and our downs and know other people understand what we’re going through. I come to The Caregiver Space for support, but lately it’s been stressing me out.
Let’s leave the political arguments for another Facebook page and get back to supporting each other.
My 4-year-old daughter, Elle, is in the fight of her life. Her older sister, Milla, lost her fight last November. Their opponent? Batten disease, a rare, fast-moving, and fatal condition that destroys the central nervous system’s ability to function. Elle has a chance to help manage, or maybe even beat, her disease that Milla didn’t have:… (more…)
Florida woman experiences the ultimate heartbreak after she tries to sell her wedding ring
When Megan Starich showed up to exchange her treasured wedding ring for several thousand dollars, she thought she had done everything right. The Florida woman decided to sell the $5,000 ring to help pay for her husband’s medical bills, which stemmed from a 15-foot fall at work. Watch the video “My husband fell 15 feet onto… (more…)