Helpful advice for the journey ahead…
What do you do when you find out another one of your friends has lost a parent? With social media being the center of our world these days, frequently we find out news such as this via Facebook, even if this was not the grieving family’s intentions.
I woke up early last week to post something about The Medical Day Planner on the Book of Face and saw that one of my dearest friends from high school had misquoted Shakespeare’s Marc Anthony- I come not to bury Caesar, but to praise him. I had a nice giggle knowing that my friend is far too intelligent to have made such a mistake, and that the misquote was definitely intentional. Then there was a quick status update that he would be in Chico soon. Completely oblivious to what was going on, I texted him to see if we were going to meet up when he was here. Then it dawned on me, who has he come to praise, not bury? SHIT! I began digging around his Facebook page to find condolences by the dozen. Double shit! I had just broken my own “no technology” (no text of FB for condolences) rule without even knowing it. I immediately dialed his phone number, anticipating being able to apologize for my very lame text and give him the condolences he needed. Instead, I turned into a balling blabbering idiot when I heard his voice on the voicemail. I was able to spit out that I was very sorry for his loss, that if he needed anything while he was in town (a room, clothes, food, a hug) that I would do whatever I could, and that I was sorry for crying into his voicemail.
When he got off the plane and received my voicemail, he called me straight away to tell me that it was okay that I was crying on his phone, and that he would see me soon. Ay yai yai!
The point of this blog was not to admit that I am a cry baby at times, even though that is fine. What I wanted to talk about was the rally of support my friend received from his friends and the community. And mention what an amazing job some of his friends (not me) did at putting together a fabulous celebration of life.
The celebration took place at a local “convention center” that was donated and the theme was Hawaiian shirt. For those of us who knew “Q”, the deceased, it was an all too fitting theme, as he loved to wear the most heinous Hawaiian shirts. Q was an avid actor in the local scene and had a smile a mile wide. The ladies who put the celebration together decided on creating a playbill instead of a program for the afternoon. The named the show “The Unconventional Q” and it was put on by “Occupy Everything” Production. (Again, another inside joke, as Q was at the forefront of the occupy movement here in Chico.) The inside of the playbill had all the actors of the show listed; Starring “Q,” Supporting actors “his children” (who I are remaining nameless), all the way through screenplay, director, visual effects…you get the idea. It was creative and just what Q would have wanted.
Death sucks, we all know that. Unexpected death is a double sucky when people aren’t prepared and haven’t asked the questions that needed to be asked. So what questions should be asked? I am happy to lay out a laundry list of tough questions, but I would like to reiterate that these questions do not require an illness or disorder to be brought up. Every able minded human being should have this conversation with the ones they love.
• Who would you like to make decisions for you if you are not capable of making decisions for yourself? (Durable Power of Attorney, Agent)
• What types of treatments do you (or do you not) want in the event that life sustaining treatment is necessary? (DNI, DNR)
• What are your wishes in your final days? Would you like to be at home, in a hospital or assisted living facility? Would you like hospice or palliative care?
• Would you like to be buried or cremated? Where would you like your remains to be placed?
• Would you like a funeral or celebration of life? I know plenty of people who have actually helped plan their own funeral or celebration- picked out music, theme, venue etc.
These conversations do not need to be morbid. They are a reality for all of us, so why not get it out on the table.
People release emotions several different ways. In the past, I was a victim of the Ben & Jerry’s eat-a-pint-of-ice-cream emotional release. My favorite form of energy release these days has become exercise; cross training with heavy Olympics lifts, high intensity “WODS”, swimming, hot yoga, a little boxing and dog time at the river. Have my days become a little obsessive? Maybe. But learning to tame my emotions have been a struggle my entire life, and something I am well aware I must work on. Better exercise than food…
One form of release I know I need to work on is allowing myself to cry more often. A few years back, after mom passed away, I allowed myself the opportunity to cry ALL. THE. TIME. As time has passed, I find myself making excuses as to why crying is not acceptable; move on, life goes on, suck it up, no one wants to deal with your crying, including myself. The fear of never stopping the flow of tears is very real, and the thought that my puffy eyes will be a dead give-away and someone will take pity on me is also not super appealing.
A few weeks ago I had an experience that has brought back my pro-crying mentality. I was sitting on our loveseat with my computer in my lap and Ryan was on the couch with his computer in his lap. (Very romantic, I know. It’s quite difficult living with two career driven individuals under one roof, but I digress.) We were both working on separate projects, but for whatever reason, the television was on, and National Geographic was airing a program about amazing animals. Instantly I knew the show was going to be a tear jerker and I asked Ryan to turn the television off. He didn’t…
The program continued with a story about a dog and an elephant who had become more-than-amazing friends while living on a sanctuary together. The story wasn’t even sad to begin with, but I felt the know growing in my throat. After the time I spent in Thailand, I have amazing respect and a soft spot in my heart for elephants. Not to mention I treat my dogs as children.
Being slightly jaded by life, I blurted out “what is the elephant going to do when the dog dies? Elephants live forever!” Ryan looked up at me in disbelief. Was that all I was getting out of this story?
The program continued to tell how the dog had broken her back out in a pasture and how the elephant had guarded the dog until the owners of the sanctuary arrived to save the dog. How the elephant wouldn’t leave the spot where the dog was hurt until the dog returned. And once the dog was better, how the elephant caressed the dog’s back with its trunk. Seriously, talk about tugging the heart strings!
Just when I thought I had survived, and the story was over, the narrator of the program decided to add a follow-up (which as far as I was concerned, he could have kept to himself). After the story was filmed, the dog had been mauled by coyotes and passed away. ARE YOU KIDDING ME?
The waterworks started. The ugly-cry I had been keeping deep inside my gut erupted to the surface and I became a complete basket case. So much so, I was forced to retreat to the bathroom and take a long hot shower while I cried…and cried…and cried. Obviously after several minutes of crying, I was no longer grieving the dog and the elephant; I had progressed on to my own real-life issues and grief I had been suppressing. Then it dawned on me; I had made it through the anniversary of my mom’s passing, my birthday and my mom’s birthday without shedding a single tear. “Not healthy, little missy” my mom would have said.
Although that particular cry-fest was a bit traumatic, I sure felt fantastic when it was over. A tension in my chest and gut that I hadn’t realized had developed was now gone. My fear of the tears never ending was subsided and I was only forced to deal with a little sympathy, which was actually quite comforting.
What is it about our thought processes and society that makes us feel the act of crying is weak? Do yourself a favor and let out a good cry once in a while.
It’s January 23rd. Again. One more year has passed since Mom left. Another year of learning what it means to cope, to grieve, to thrive and to live. With each day that passes, the rawness of what has occurred dulls, but the pain never fully goes away.
It’s January 23rd! That means All Things Caregiver is officially one year old. I didn’t quite achieve my goal of posting one heartfelt, sincere and well thought-out post per week, but I came close. There were weeks when “life” won and the time slipped away from me, or (to be totally honest) I was in a funk and felt totally uninspired. The writing has been cathartic, and I thank those of you who take the time to read my ramblings. It means more to me than you know.
So what does it mean to have lived three years without my mom? I don’t know much, but what I do know is that time flies by faster than the speed of light; it flies by at the speed of life. If you had asked me four years ago how I believed I would cope with my mother’s death, I wouldn’t have an answer for you. There is no answer. You don’t know until you have lived it. It’s like asking a preschooler to explain the physics of a black hole. No one truly understands a black hole. Those who study black holes have theories and make do, while a preschooler (probably) cannot even begin to imagine the basics of physics, let alone the physics of a black hole. If anything, I probably would have told you “I will die the day she dies. I will not be able to continue my life. It is unfathomable. Period.”
Although a piece of me did die that day, most of me is alive and well. The mind is a powerful being and has an amazing way of protecting itself…from itself. I am always happy to share my experiences with others, in hopes of helping ease their situation. In my particular instance, in the days after my mom’s passing, her memory quickly disappeared from my memory. I couldn’t remember the sound of her voice, what she smelled like, or even picture her face. Yes, I was in “go-mode,” trying to make final arrangements; I had a house closing in escrow, and I wanted more than anything to get the heck out of Chico, out of California and out of the country. I would have flown to Pluto had it been an option. In the months that followed, as I came to terms with what had happened, her memory slowly started coming back. I carried pictures of her in my diary, and looked at them daily. I cried often and tried to talk about her to anyone who was willing to listen.
Having an amazing support system has been the number one key to my successful recovery. I am, hands down, the luckiest girl in the world. I have the coolest dad on the planet, a thoughtful brother, the most patient boyfriend (someone should give him a medal, ‘cause I am not easy), clients who come in for their “hour off” who are genuinely concerned about me, aunts that still include me in “girl’s weekend” and friends that call or send cards “just because.” I had a mom who loved life, loved her family, loved music and left a legacy I am honored to carry on.
I remember moments after she passed away; we were all at a loss of what to do next. I had confirmed there was no pulse. My brother noted the time; 8:27am. My aunt, dad, brother and I all hugged each other and we stared at my mom’s lifeless, smiling body. She had gone relatively peacefully and she was smiling. In that moment, I remember not fearing death.
My dad walked to the living room and turned on Eric Clapton. My mom l-o-v-e-d Eric Clapton; more than any sane individual should love a rock star (excuse me, Rock God!) I remember hearing Layla play and how comforting the song was. I don’t remember any other tunes, until Motherless Children began playing. Instantly I was upset and the waterworks started again. I was almost frantic to stop the lyrics from pouring out of the speakers:
Motherless children have a hard time when mother is dead, lord.
Motherless children have a hard time when mother is dead, lord.
They don’t have anywhere to go;
Wandering around from door to door.
Nobody treats you like a mother will when your mother is dead, lord.
Father will do the best he can when your mother is dead, lord.
Father will do the best he can when your mother is dead, lord.
Father will do the best he can;
So many things a father can’t understand.
Nobody treats you like a mother will when your mother is dead, lord.
Sister will do the best she can when your mother is dead, lord.
Sister will do the best she can when your mother is dead, lord.
Sister will do the best she can;
So many things a sister can’t understand.
Nobody treats you like a mother will when your mother is dead.
When your mother is dead, when your mother is dead.
When your mother is dead, Lord, when your mother is dead.
My aunt quickly pulled me away from the stereo set-up (which was the correct move, because I may have broken it to make it stop), looked me straight in the eyes and said “YOU are NOT a motherless child.”
She was 100% correct; I am not a motherless child. Every time I find myself in a self-pitty-party, moping about missing my mom, I hear my aunts words, “you are not a motherless child.” However, the song is correct about a few things:
Father will do the best he can; So many things a father can’t understand. Nobody treats you like a mother will, when mother is dead, lord.
Very rarely do I sit down at my computer to write without some sort of a plan of what I am going to put on paper. Today, I am just going to babel, because babbling seems to be what my life consist of from the beginning of January to January 23rd, every year now. I am exhausted all the time for no reason. The last two days, I have been done with my “office gig” early, and headed home with the intention of sending emails to prospective The Medical Day Planner reviewers. Unfortunately, I sat down to “close my eyes for a minute,” and wham!, it was 5pm.
Yesterday I drove down to the Sacramento International Airport to retrieve my brother and his buddy, who had been lounging on the beaches of Lanai the last ten days. Our family routine is to park at the gas station located on the airport grounds, and wait for the call that the luggage is collected and the travelers are waiting on the sidewalk, ready to be picked up. Usually, I make the hour-and-a-half commute by myself, but this time I asked my Dad to accompany me.
As we reached the gas station, I realized I better use the facilities before making the drive home. I parked the car, jokingly told my dad I had to use “the potty,” and ran into the convenient store. As I entered the not-so-sterile ladies room, my gut sank and my eyes began to fill with tears. I looked at myself in the mirror and asked myself “are you really crying? Why are you crying?” Then I looked at the yucky toilet and the handicap-rail next to it. All I could envision was my mom’s tiny, frail body; unable to prop herself up. Then it dawned on me; it was exactly three years ago to the day that my brother and I had made the same drive to collect mom and dad from their Mexico vacation.
Like I said before, I usually made the run to the airport by myself, but three years ago was different. Dad had called us from the resort in Mexico and told us mom wasn’t doing so well. In fact, she was completely out of her mind, and he was going to need a hand in Sacramento to carry all their luggage, and her. When we arrived at the airport, dad had set mom on a bench outside the luggage claim, and gone back in to retrieve the luggage. As we pulled up to her, she could barely hold her body up, but she recognized us and was ready to go home. She was in great spirits! Almost too great of spirits; like she was drunk…Instantly, I was not happy with her.
As we left the airport, mom requested we stop at the gas station so she could use the facilities (see a pattern with our family). I helped her into the ladies room, because there was no way she would have been able to escort herself. The entire time we were in the restroom, she babbled on and on about how kind the Hawaiians were at their resort.
“MOM! You were in Mexico! What is wrong with you?”
She laughed and struggled to rip a piece of toilet paper from the roll. I helped her over to the sink so she could wash her hands before heading back to the car. She didn’t wash her hands; she just stared at herself in the mirror. To this day I wonder what she was thinking. Did she know she was dying? Why couldn’t she explain to me what was going on? Was she upset that I was so upset with her? Or was she content being inside her own toxic, hypercalcemic brain?
As I left the restroom, three years later, I pulled myself together. I smiled at the woman waiting to use the room I was in. I smiled at the group of people congregated around the door as I left the convenient store and gave myself a pep talk as I walked back to the car.
“Hey Dad, you know that today is exactly three years since I picked you and Mom up…”
“Ohhh” was his somber reply.
Happy New Year everyone! Sorry it has been a few weeks since I have checked in; I’ve been sidetracked with amazing food and fabulous people. Oh yeah…and a little book action as well. If you haven’t seen the video for The Medical Day Planner, check it out here.
Christmas was a much bigger success than Thanksgiving this year (thank goodness!). Dad, brother and boyfriend drove down to the Bay Area on Christmas Eve, after much shuffling about. I was under the impression we were going to open the one present we each purchased for each other with the rest of the family in the Bay. Incorrect. So we headed back to my house to do a Zellick-Stefanelli Christmas with the dogs, before running off to breakfast for pre-drive nourishment.
Once we reached my uncles house in Alameda, it was apparent we had a feast in store. As you walked through the front door, a waft of Mexican spices and aromas hit your palate. Let the drool begin! Dinner was served: homemade Chile Colorado, homemade carnitas and homemade flan…not bad for a family with no Mexican heritage! A dinner like that will send you straight to bed; and that is exactly where we all ended up.
The following day we took a leisurely cruise out to Livermore to see my Auntie, Uncle, and cousin. This being the sweet-tooth side of the family, the aromas that hit you while walking through the door were of sugar cookie goodness. I had been waiting forever to devour my aunts chocolate mousse pie. After a phenomenal dinner of meatballs, raviolis, rolled coppa and veggies, the pie was served. It didn’t take long for all of us to sink into a food coma and head back to bed.
New Years was the same. Ryan has just recently built himself a 55-gallon smoking barrel. The meat that comes out of that thing is fantastic. Surrounded by great friends and family, we toasted the New Year with six smoked tri-tips, three smoked chickens and too many pupus to count. Ah yes, as well as scrumptious red wine, vodka tonics and the traditional champagne toast at midnight. Followed by a polar bear swim the following morning…yikes!
I’m sure most of you had a similar holiday experience (at least I hope you did.) I started this blog with the intention of discussing traditions, as I am a huge advocate of keep traditions alive. It is apparent that good food is our family tradition, because I sure went off on a tangent or two. What I really wanted to discuss was the amazing gift my grandma (with the help of my cousin) put together for each family member (on the Zellick side) for Christmas.
After dinner, we collected our chairs in the living room and sat in a circle. Yes, the food coma was sinking in, but it was present time. Grandma promptly handed each family member a package; all looked strikingly similar. On the count of three, we all tore into our square package. Each one of us was holding a binder. Inside the binder was our family lineage, dating back to 1535. A pretty incredible gift, if I do say so myself.
I quickly dug into the binder, reading it from back to front, spending my time reading about my grandparents and great-grandparents. Then it hit me, the family tree on the last page had my aunt, dad and uncle, along with their significant others and children. Both my mom and my cousin’s mom had a deceased date next to their name. “Thank sucks”, I thought to myself, while I held my tears in.
I have said it before, and I will say it again; life is uncertain. The gift my grandma shared with us on Christmas is irreplaceable. If you are not sure of your family history, sit down with the ones you love and ask questions. Who was your great-great-grandfather? Where is your family originally from? When did they migrate, or did they migrate? What types of jobs did they work, languages they speak or hobbies they mastered? You never know when the time will come that someone will not be around to answer those questions.
Sorry it has been close to two weeks since I have written. To be honest, I have been totally uninspired. The holidays are difficult to cope with and I am doing everything I can to avoid becoming Ebenezer Scrooge.
The week before Thanksgiving I was fortunate enough to accompany my boyfriend and Chocolate lab, Hank, to Baja. (Yes…I was accompanying them; it was definitely a boys’ trip.) The week away was exactly what I needed. Ten days of windshield time, racing through the beautiful desert, staring at the magnificent purple mountains outside the passenger window and camping by the sea. Tacos, beers and boys; seven men and one male dog to be exact. Oh yeah, and me.
I love Baja for so many reasons, but the ability to be completely out of communication with the rest of the world is at the top of my list. Amazing food cooked by an open camp fire and fabulous conversation led to nights of laughing that took me back to a time in my life when laughter was the norm, and life was less complicated.
Originally the trip was planned as a vacation. The Baja 1000 offroad race was going to be taking place the last two days of our trip. Our intent was to “pre-run” sections of the race and camp along the way. As with any time you travel with us, plans change…quickly. Usually the change-of-plans add for an extra fun adventure. The first few miles into day one, one of our rigs decided to start a boxing match with a large boulder and received a total-knockout in the first round. With the front driver’s side wheel ripped off and a flat tire (with bent rim) on the driver’s side rear, it looked as if we were not going to be going anywhere. (Did I mention these are grown men? Ages 30-50 and should know better.)
What happened next was awe inspiring to me. Each man walked to the bed of his truck and began digging. Digging for what, I hadn’t the slightest clue. Before I knew it, there was a complete mechanic’s garage set up in the middle of the desert. Within an hour they had the truck moving forward (only at a few miles an hour, but rolling none the less.) Unable to make it to the next (first of the trip) town, we opted to stay the night in a small clearing by a lake…in the mountains! (Who knew there were mountains in Baja that resembled the High Sierras?) It was absolutely freezing and some of the group had intended on shopping for food in the first town we came across. No town equaled no food.
Those of us who had packed food for the trip rallied together and cooked a pretty fabulous meal for the group. Elk steaks from a recent hunting trip as well as sausages from a local butcher made for a feast fit for a King. The way these men supported each other was incredible. I remember thinking to myself that night, “if only everyone treated each other this way, the world would be a better place.”
The following day we headed to town and started a chain of reactions that would eventually rescue the broken truck and keep us moving forward on our adventure. Hours later, we were cruising through the desert scape when we heard a mayday over the radio. A pre-runner (truck) had a flat tire at mile marker 444 and was also stuck in the sand. Not a problem! Mile marker 444 was only an hour out of our way, and we couldn’t possibly leave someone stranded in the desert. So off we went to rescue truck number 1701.
An hour later, when we arrived at truck 1701, someone else had helped them change their tire. Our boys quickly pulled the truck out of the sand and we were off…again.
Each day we found ourselves helping fellow desert racers, either fixing broken vehicle parts or donating fuel to those who had run out. To say the least, I was impressed. It opened my eyes to how jaded I have become and how supportive perfect strangers can be to one another.
Support has become a relative term in the last decade. It is unfortunate when someone is diagnosed with a terrible illness. It is even more devastating when they lose the battle to the disease or disorder. I have found that my support system has changed through the years. My core group of support, my Dadio, my brother Nick and my very patient boyfriend Ryan, have remained close the entire journey. Unfortunately, some friends and family have faded. Life goes on, disease and grief are scary and some people can’t handle it. This is not to say that some of my friends haven’t totally kicked butt and been around when I need them…because they certainly have. I have also had the opportunity to meet new exciting people along this ride we call life.
I have also found that there are times when you need to ask for help and support. Chances are there are people close to you who want to help, they just may not know how; particularly around the holidays. This is a sensitive time of year. If you are feeling blue, unmotivated and uninspired, ask for help. Express to someone close to you how you are feeling. Chances are they will be able to help you help yourself.
I was asked by an individual at SeniorHomes.com if I would be willing to share my caregiving story. Sure! isn’t that what I do every week?
As I sat down to write, the words were flowing freely from my fingertips…tick, click, tack, on the keyboard. Within no time at all, the short essay was complete, and all I needed was a listening ear to make sure it all sounded A-O-Kay. As I began to read my story to Ryan, the story I had lived for years and had just penned with no issue at all, the gremlin that lives in my gut began to squeeze my esophagus and I lost full control of my tear ducts. The flood gates opened and there was no stopping the raging river that was streaming from my eyes.
And you know what? It felt goooooooood! Whew! It’s been awhile since I let those babies out…
Hope you enjoy the story:
At the age of eighteen, when everyone I knew was off enjoying their first year of freedom in college, I found myself caring for my mother who had been diagnosed with breast cancer. Her prognosis was “so-so”, but she rallied through her treatment like a true champion. In the late summer of 2003, my mother received a clean bill of health!
Feeling as though I had “missed out” on the ceremonial “spreading of thy wings”, I decided I would take it a step further; I spread my wings and flew to Hawaii with a one way ticket, a backpack, and a small amount of savings. With no place to live, I set out on a new adventure; I was going to discover my true self…
What was going to be six months of explorations turned into almost two years of self-discovery; until the unthinkable happened. One August 14th of 2005, I received the phone call that would forever change my life. My dad called to tell me the pain mom had been experiencing in her back was actually breast cancer that had metastasized to her spine. She had approximately three months to live.
After falling to the floor and having a hysterical crying fit, I pulled myself together long enough to drive to my place of employment and quit my job. With puffy eyes and a quivering lip, I tried to explain to my boss (a totally amazing and caring man), that I appreciated every opportunity he had given me. He smiled an empathetic smile and told me he needed to no explanation. (Whew…step one…down.) Next, I drove with both hands glued to my steering wheel to my realtor’s office. The condo I had owned less than a year was going to need to be sold, because I was moving back to California. Tomorrow.
With arrangements to sell my home and ship my dog back to the mainland, I boarded the flight home. Holding back tears, I watched as Maui quickly disappeared into a sea of blue as the plain ascended through the clouds to our cruising altitude of thirty-thousand feet.
As soon as I arrived home it was business time. There were doctors to see, treatments to attend and medical bills to be paid. It was determined that I would live in the family home (uh…my stinky little brother’s room to be exact), and help Dad care for Mom. Do to the severity of her condition (C1 fracture, “moth eaten” spine and pelvis), Mom was going to need full-time care and supervision. Although she was on enough pain medication to tranquilize a horse, she had the mind of a bull, and still thought she was capable of doing everything she had in the past; i.e. drive!
The initial power struggle was devastating to our relationship. My mother was the quintessential “mother”; dinner was on the table every night at 6:30pm, the house was to be cleaned from top to bottom every Friday, and laundry was done on Mondays and Thursdays. Daily trips to the grocery store where usually necessary to put together the three course dinners, as well as weekly Costco runs. She was reluctant to relinquish her “power” to her own daughter.
Needless to say, I didn’t quite clean with the enthusiasm she had, I despised folding laundry and I lacked the ability to be a Three Star Michelin Chef, but I attempted to fill her void.
As with most caregivers, I accompanied my mom to all of her doctor’s appointments and treatments. We opted to include alternative treatments (naturopathic, homeopathic, acupuncture etc.) as well as western modalities into her treatment regime. One day she would be zapped by a zabillion dollar radiation machine; the next day she would be muscle tested by a nice hippy man who would give her homeopathic drops.
Our relationship eventually transitioned into one of trust and camaraderie. I was her number one cheerleader. Many individuals outside of our family-unit did not support her decision to work with alternative modalities, and thus, made Mom question her treatment decisions. After much contemplation, my mom opted to partake in a chemotherapy trial at UCSF in early 2008. (She had surpassed her three month “death date” by over two years!)
Every three weeks I would drive Mom the three and a half hours to San Francisco, where she would have her blood drawn, tests examined and medication manipulated. Once the lead oncologist gave her the thumbs up, we would drive the three and a half hour home; not without stopping at Mel’s Drive In for chocolate milkshakes and open-faced turkey sandwiches smothered in gravy first.
In the fall of 2008, it was becoming apparent that something was not right. I was convinced the cancer had spread to her brain; her short term memory was nonexistent and she was slurring her words. After several tests were performed, it was determined that I was the one losing my mind, not my mom.
After several instances of “foot-in-mouth” disease (mostly on my part), we decided a break would be best for the two of us. Dad had witnessed World War III break out between Mom and I, and in an effort to prevent World War IV, we took separate-but-equal vacations.
Unfortunately for me, my mother’s physical body returned from her vacation, but her mind was gone. The mysterious ailment that I had assumed was a brain tumor was actually a mild case of hypercalcemia. After contracting a urinary tract infection on her vacation, her body was no longer able to keep the hypercalcemia at bay. Thirteen days later she was gone.
Although there was never a final apology for our final mother-daughter spat, I was able to lay in bed next to her as she left this life. At one point, as I whispered “I love you, Mom”, she remembered who I was, moved her hand to my face and said “I love you too, Tor.”
My journey of caring for my mother is now over, but I can’t possibly leave well-enough alone. I choose to re-live all of my experiences through a blog, titled All Things Caregiver. It is with sincere intention that I share my experiences and offer up advice for individuals at any stage of the caregiving process. I am also the author of a soon-to-be released book, titled The Medical Day Planner. This book (slash “planner”) is an organizational guide to help caregivers track and document all vital information pertaining to the caregiving process. Both of these projects are just as much of a healing process for me as they are helpful tools for other caregivers.
As young children we are taught the saying “sticks and stones may break my bones, but words can never hurt me.” It isn’t far into our adult life, maybe the first scuffle with our best friend or our first break-up, that we realize words are the harshest weapon on the planet. They hurt more than any stick, stone, knife or bullet and the worst part of all…you cannot ever take them back once they are spoken.
Caregiving is a difficult job. You often find yourself over-worked, exhausted and in someone else’s personal space on a regular basis. Exhaustion and lack of personal space can very quickly lead to a lack of patience or becoming hot tempered. To make matters worse, the person you are caring for is obviously ill or suffering from some sort of disability or disorder. They are probably uncomfortable, possibly on medication, and “no longer themselves.” It is their personal space that is being invaded by you; they are no longer independent and quite possibly not thrilled about the situation.
Disorders and illnesses such as dementia, Alzheimer’s and amnesia (TBI or stroke), can be difficult because the patient may not remember who they are, or who you are. It is certainly not the patient’s intentions to hurt your feelings, however, feelings may be hurt. It is important in a scenario such as this to be prepared.
In instances such as dealing with a cancer patient or someone who has suffered a debilitating injury, the pain and pain medication may lead these patients to say hurtful things that they may not have spoken otherwise. “Chemo-brain” is another horrific side effect of certain medications that leave the patient at a loss for words, loss of memories and downright aggravated.
It is important as the caregiver not to react to these situations. Our natural human reaction is to become defensive. Once we become defensive, chances are we may say something we will regret. Once the words are spoken, they cannot be taken back.
I am not suggesting that being sick or disabled is an excuse to say hurtful things and get away with them. Take a good long look at your particular situation and determine what is and is not worth becoming worked up over and what is forgivable. If you cannot handle that your own father does not recognize you, but he is in the progressive stages of Alzheimer’s, you may not be the best person for the caregiving role. On the other hand, if you are in a situation like mine, where most of the arguments were strictly mother-daughter spats, think twice before you lash out.
Towards the end of my mother’s illness, she became very loopy. As a child, I remember her drinking too much wine and becoming tipsy. The characteristics of her illness progression where very similar to who she would become when she had too much to drink. It was a negative trigger for me, and would in turn make me a much less patient caretaker. Her symptoms made me anxious and uncomfortable. I was convinced her cancer had either metastasized to her frontal lobe, or she was drinking when I was not around. Either way, I was not happy.
I convinced the physicians my mom was losing her mind and that something must have been terribly wrong. After several tests and scans, it was determined that her illness was not progressing at all, and that I may be the lunatic, not her. It eventually got to the point that we could not be together longer than a few hours without wanting to rip each other’s hair out. No answer I gave her for her questions was correct, and every word that came out of her mouth made my skin crawl.
In late November of 2008, World War III broke out in the Zellick household. We told each other exactly what we thought of each other…and it was not pretty. After my dad calmed me down and reminded me that one day I was going to regret everything I had just said and that I better stop while I was ahead, it was determined a break was in order. I was going to run away to the coast with my boyfriend for a week, and Dad was going to take Mom to Mexico the day before I made it home from the coast. This would give us exactly two weeks and sixteen hundred-twenty four miles apart from one another.
Unfortunately for me, “my mom” never made it back from Mexico. Her physical body returned on the plane, but her cognitive mind was gone. She had been secretly suffering from hypercalcemia, and it was later determined the hypercalcemia was why she was “loopy”. A urinary tract infection she had contracted on her trip along with the low-grade hypercalcemia had been too much for her kidneys to handle. Thirteen days later she passed away. Gone; no opportunity to say “I’m sorry.” I was, however, lucky enough to get an “I love you.”
I hope this wasn’t as hard to read as it has been to write. I suppose it drives the point home; sticks and stones may break bones, but words break hearts. Choose your words wisely.
Recently I have been introduced to an amazing little online community called Caregiver Village. What a wonderful resource for both veteran and novice caregivers alike! It gets better; for each new individual who joins Caregiver Village, the founders of Caregiver Village will donate $1 to a care charity of your choice.
So what is Caregiver Village? Caregiver Village is a community where you can connect with other caregivers, join book clubs and discussions, journal, play mystery games, and learn priceless information about caregiving. The “village” is huge and initially takes some time to navigate:
Cara’s House is where the book clubs meet. Some book clubs actually read books while others are a place for discussion on topics of interest.
Foghorn Books and The Village Market are locations that suggest products and books that may help you through your care process. Both locations are linked to Amazon, so if you find a product or book you would like to purchase, it’s as easy as clicking a button.
Seaside Senior Care and Lighthouse Library are lists of links to online resources for support and research organizations to medications and publications.
The Storm Gazette is the village news with weekly (realistic!) tips.
All in all, I wish something as savvy, fun and educational had been available a decade ago when I started my caregiving journey. For a more in depth description of this wonderful world check out www.caregivervillage.com/social-media
Do you remember being in your high school “home room” class and the adviser asking you what you wanted to be when you grew up? Most of us had dreams of a college education, a successful career, a life partner, kids, a dog and a white picket fence. This scenario I dubbed “The Book-O-Life”. You know, the book your parents urged you to follow: get good grades in high school so they could kick you out and send you on your way to college, where you would graduate in four years and become completely independent. Shortly after college The Book says you move into a steady career, get married, buy a home and practice parenthood with a dog. Once it is confirmed you can keep the dog alive, it’s time to make babies! When the babies are all grown, you give them their “Book-O-Life” and the cycle continues.
According to the “Book-O-Life” I had created in my own mind, I was pretty sure I would have this all accomplished by twenty-five. It was a nice round number and seemed like an attainable goal. Unfortunately, the powers that be had a much different Book laid out for me. The day before my twenty fifth birthday I found myself sitting on a beach on an isolated island in the Gulf of Thailand. My mother had been gone for fifty-one days, I had a boyfriend who did everything in his power to support me, but I pushed him away, I had walked away from finishing my “education”, and the dogs were pissed that I had abandoned them and ran away to Thailand with my dad and brother. If my home room advisor was going to give me a grade on who I felt like I had become, I felt like I would have received an F-.
As I laid on the beach, crying with my eyes closed, I pondered what my life had become. In twenty-four hours I was going to hit the big Two Five and my life was a frickin’ mess. In that moment of self-pity I made a decision; I was not going to give in to my grief. I knew that with all the experiences I had had, I would be able to improve other caregivers’ situations. I began to ask myself “what would have improved my situation?” It was there, on the beaches on Haad Mae Haad, that The Medical Day Planner was born.
The Medical Day Planner is comprised of helpful tips to staying organized throughout the caregiving process, as well as providing fill-in-the-blank sections to track doctor and facility information, medications, test and scans, procedures, appointments and hospitalizations. There is also a fifty-two week day planner allowing the caregiver to have all pertinent information at his or her fingertips at all time. The planner is not specific to any disease, disorder or disability. It is a universal tool that will be helpful for any individual who finds themselves in a position of caregiving. I believe that if a physician, nurse or caregiver had recommended The Medical Day Planner to me at the beginning of my caregiving journey, my experience would have been different. The overwhelming sensation of not know what information to track would be alleviated just by following the suggestions in the book.
I am very excited to present to you The Medical Day Planner by Tory Zellick, available for pre-order on Amazon