Helpful advice for the journey ahead…
10 years…What The #$%&?
I remember the Chico High Class of 2002’s last assembly- we had to decide whether we wanted a ten-year or five-year reunion. We all sat in the gymnasium, huddled on the bleachers, released from regular class to discuss when we would get to see each other again. We were excited and scared for what lay ahead of us; tiny fish in a very large sea. We all had big dreams of college, moving out of our parent’s house for the first time, making new friends, making money and…well…partying! Although it seemed an eternity away, we decided ten years would be best.
This Saturday was my ten-year high school reunion. Holy moly, did time fly! Unreal, really. Mind boggling. I remember my parents saying on several occasions to “hold on to these years, they go fast,” or “I would take my high school years back, any day.” I get it; if this is how fast life flies, I better start paying attention.
I often write about The Book of Life; my imaginary, unrealistic guide I followed (or tried to follow) through life, until the day my life forever changed. Once Mom was diagnosed with breast cancer, I threw the Book of Life out the window…at ninety miles an hour. I “quit” college to experience an adventure of a lifetime in Hawaii, and gave up my adventure to come home and care for Mom in her final days. All decisions I stand behind, however, not decisions I thought were acceptable in my The Book of Life. My “book” forgot to mention that I would bury a childhood best friend, two grandfathers and my mother before I was old enough to sign on the dotted line for a rental car.
I also was not prepared to be presenting and doing a book signing for a book I wrote, at a bookstore where I bought textbooks before I “quit” college, the week of my ten-year reunion! Life is silly- and just like Forrest Gump said, “Life is like a box of chocolates, you never know what you are going to get.” I know we have all made fun of, or giggled at this line, but it is a classic (and so unbelievably true).
When a client asked me about how I felt, knowing that my “big reunion” was coming up, I honestly replied with “slightly disappointed.” “Why?” this client replied. Because I am still ME. When I hear my voice in my head, it’s me. When I refuse to do laundry until there is no more clean underwear, it’s me. When I giggle until tears are streaming down my face and my stomach hurts, it’s still me. I one-hundred percent believed I would be a different person by now…but I’m still me. Go figure?
My group of girlfriends from high school and I all agreed to ditch the reunion for a reunion of our own. It was only fitting- for being all 4.0-3.8 GPA students, we certainly didn’t attend much school, or school functions. We were antisocial to say the least. I mean, we were social, just not with others our age. We had a tendency to have friends at the college (sorry Dad). The boys were much cuter at the college level, and they had cars…that actually fired up when you turned the key. What can I say?
I was excited to reunite with these girls. We have had several “reunions” in the last few years, but I was still a bit nervous to catch up and see what everyone else was up to. My old Book of Life has a tendency to rear its ugly head at inappropriate times, making me feel like maybe “I could have done something better,” “I’m not married, or even engaged, let alone kids…am I failing?”
Some of us are married, some of us have kids. Some have college degrees, some have solid careers. Some are self-employed, while others are rocking at being awesome mommies. Some of us have buried a parent, and all of us have buried a friend or family member. Unfortunately, we are a war generation, and some of us did not make it home.
All in all, the reunion was a much needed reminder that we are all on our own path, and doing just fine. Although I am nowhere close to where I thought I would be at twenty-eight, this weekend was verification that I have taken my lemons and made a pretty decent lemonade.
Amber Paley is a guest post and article writer bringing to us tips for caregivers. Outraged by the rate of abuse in nursing homes, Amber spends much of her professional life writing about nursing home abuse at http://www.nursinghomeabuse.net
Being a full-time caregiver is far from simple. It’s time-consuming, emotionally draining, and leaves you little time for yourself. Admitting this is easy, but what’s not so easy is taking the time to take care of you first. What caregivers need to realize is that by taking time for themselves, it doesn’t mean that they don’t want to take care of their loved one. As a matter of fact, it’s quite the opposite; by taking care of yourself, you are ultimately offering your loved one better care. A caregiver who is happy and healthy will provide better care to their loved one than a caregiver who isn’t. Below you’ll find some tips to help you remain happy and healthy and, ultimately, provide your loved one with the best care possible.
Know and Accept Your Limits
As a caregiver it is imperative that you know as much possible about your loved one’s medical condition/s. You must also recognize what you can do to help your loved one as well as what you cannot. Be sure to set your limits for how much time you can spend caring for your loved one and make arrangements for those times when you cannot be there; a set schedule is the best way to stay organized and arrange for another person or care professional to help you with your caregiver duties. And when people offer to help, LET THEM. There is only so much one can physically, mentally, and financially take as a caregiver. Be open to new technologies, techniques, or ideas that will help your loved one be independent or make your life easier as a caregiver.
Nurture Your Mental and Physical Health
Mental health isn’t something that many consider when they think about their overall health. However, our mood is something that can affect us physically. Stress and depression are known to adversely affect our hearts, among other organs; they also affect our energy levels and mental drive and ability to do things. Thus, as a caregiver, it is imperative that your mental health is good so that you can provide the best care possible to your loved one. Talk to loved ones, friends, and other caregivers, or a therapist; do not hold feelings or problems in, express them and discuss them with others. And ensure that you are maintaining your physical health. Go to a doctor regularly for check-ups. Eat healthy foods, exercise regularly, and get adequate sleep.
Whether or not you want to consider it one, being a caregiver is a job. It’s physically and mentally draining and it is important that you reward yourself in order to stay sane. Take a vacation every now and then, or at least dedicate a few hours a week to you. Go for a walk or shopping; read a book, listen to music, go out with friends, etc. It doesn’t matter what you do or for how long; even it if it’s only for a few minutes, take time for you.
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.
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.
I read the most fascinating essay the other day in the Health section of the New York Times; The Downside of Doctors Who Feel Your Pain. To be honest, the essay was short, sweet, and to the point; mostly touching on the subject of improved doctor-patient communication. Is it better to have a “nice” doc and do away with the stereotypical “know-it-all” doc?
The essay certainly sparked some serious conversation in my office. As a sports massage therapist I have a wide array of clientele. Most clients are avid athletes in one form or another; be it CrossFit-like training or triathletes. The other groups of clients are referred to me through physical therapists and the local pain clinic; mostly due to lymphedema or scar tissue around surgical scars (usually mastectomies).
The type of massage you receive in my office is far from relaxing, which leaves ample opportunity (one hour to be exact) for healthy and stimulating conversation. Unfortunately, because of the age demographic and the “outdoor” lifestyles my clients have chosen to live, many of them have (or have had) cancer in one form or another. After reading this article, I was curious what my clients thought, because I certainly had an opinion.
If you are reading this, chances are you, or someone you love, has received “bad news.” Bad news comes in all shapes and sizes, and can be communicated in several different ways. When you (or a loved one) received your bad news, where you prepared? Was your cognitive mind as sharp as a whistle? Did you catch and understand everything that was coming from your physician’s mouth?
It was just last week, before I read this article, when a similar conversation came up with a client. This client was a breast cancer survivor and had had a consultation with the same oncologist my Mom had seen at UCSF (three hours from where we both lived…small world). When we learned this about each other, our first response, almost in sync, was “Isn’t she amazing?”
This oncologist was amazing. We both agreed that not only was she always dressed to the nines (not that clothes make a good doctor), she was eloquent, informative, and comforting, without being warm and fuzzy. In fact, she was the farthest thing from warm and fuzzy, but you felt safe in her care. She knew what she was talking about, had a plan, and was able to present this plan in a manner in which it could be understood. Most importantly, she knew when not to say something.
I can look back now and see she gave me the information I needed to help my mother and family make the appropriate decisions. Had I been ready to hear all she was saying, I would have understood everything she was telling me. Now that I know how my story ended, I can see she told me what I needed to know, but I wasn’t ready to hear it. She didn’t beat around any bushes, she didn’t mislead anyone, she was simply empathetic to our feelings. She wasn’t grotesquely up front, and didn’t say things that may have upset my mom; she simply had tact.
Maybe that is what we are looking for… tactful doctors, not “nice” doctors.
The ability to not say something was the common critique among my clients today when I brought this essay to their attention. Each of them had a horror story about what a physician had told them over the phone; something they believe should have been a face-to-face conversation. Others were told about an “unlikely” but devastating “possible” outcome. Some don’t want to even think about these devastating possibilities; it only causes unnecessary stress. However, there are others who don’t mind being told something over the phone and want to know all of their possible outcomes.
One instance in particular that stands out in my mind as being one of those “I can’t believe you said that out loud” moments, occurred at the beginning of my mother’s reoccurrence. Because the cancer had metastasized to her bones, she was in significant pain. As I had previously discussed in Medication Education, she was on enough pain medication to tranquilize a horse. As the physicians continued to up her doses and change her to stronger and more potent medications, I remember asking, “How will her body respond when it comes time to wean her off of these medications? Will there be significant withdrawals?”
The answer: “She won’t live long enough to ever need to get off the medication.”
Ouch! My mom was sitting right there and did not need to hear such negativity. Hope is what breeds health; not unnecessary negativity. I would have been happy with “we will cross that bridge when we get there.”
So how do you breed the perfect doctor when you do not have a “standard” patient? Most successful science experiences have one variable. I can only imagine, but to test the “nice doctor” theory, the experiment could look something like the experiments below:
Take a control group of ten patients with the same ailment. (Please note: I am far from a scientist, just observant). Each patient will be given fifteen minutes with Dr. #1 to have their future treatment explained as well as have any questions answered.
Take a control group of one patient. This one patient will see Dr. #1, Dr. #2, Dr. #3 through Dr. #10. Each of these doctors will be well respected within their community and will spend fifteen minutes with this one patient, discussing future treatment options and answering any questions.
Although I have not conducted this experiment, I am willing to wager that in Experiment One, several of our patients will not like the way Dr.#1 conducts him/herself, although this doctor conducted him/herself the same with each patient. In Experiment Two, chances are our one patient will be able to rank our doctors on a scale from one to ten; one being the doctor this patient would prefer to see, ten being the least favorite doctor. If we were to repeat Experiment Two with several different patients, we would probably see different rankings from each patient.
Again, I am simply being a pain in the butt and making assumptions, but I truly believe you cannot “breed” a doctor that can please everyone. I do believe there are traits and characteristics that make some doctors better than others. However, I am only one person, and what I prefer may not be ideal for my neighbor. Take a look at the essay here and tell me what you think.
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
The truth of the matter is I was not completely honest with all the hang-ups I had while caring for my mom in the last blog post. The biggest issue I had with her still haunts me, I still get angry at times and I know I need to let it go. We faugh countless times about this issue and never was it resolved. As I look back, I realize who was I to judge?
My mom smoked cigarettes. Constantly. With all the risks involved with having a habit like that, she never hesitated to light up. There were times in her life she “tried” to quit. There were times she tried to hide her habit from us and there were times she didn’t particularly care what anyone thought and smoked openly.
We were involved in a chemo-prescription trial at UCSF in 2008. Every three weeks we would drive to UCSF (3 hours from home), have blood drawn and have the same questions asked to us as the last time we were there: How are you feeling, how does the roof of your mouth feel, do you have neuropathy in your legs, and do you still smoke? The answers to these questions were: my head feels loopy, the burns in mouth have not gone away, the neuropathy in my legs is present and yes, I still smoke. The nurse practitioner would look at my mom, look at me, and shake her head. I would say something along the lines of “see, mom…try harder.” The nurse practitioner and I would proceed to antagonize my mom about her addiction to nicotine and how it was not helping with her overall health.
One of the last visits we had to UCSF, the doctor leading the trial was present for the question asking and the antagonism that followed. She quickly jumped in to defend my mom. She looked straight at me and said “everyone has a vice, smoking happens to be hers…let it go.” My initial reaction was to say “oh yeah, except everyone isn’t dying of cancer at this very moment and continuing with a habit that possibly helps cause cancer.” I didn’t lash out at the doctor. I did however, think those thoughts in my head and it dawned on me; my mom was dying. Why not leave her alone about her habit and let her enjoy what was left of her life.
That was October 2008. She passed January 2009.
Now I have a confession to make. As I raise my right hand, I admit to you “my name is Tory Zellick and I am a sugarholic.” Not even a sugarholic, a York Peppermint Patty and Reese’s buttercup-aholic. I have been clean and sober now 36 days. The longest 36 days of my life. Will I relapse? Probably. Will I try to quit again once I relapse? Yes.
You may be saying to yourself, you cannot compare cigarettes to sugar. I believe you can. Sugar may not be plucking days of my life away as quickly as cigarettes, but it is certainly putting up a valiant effort. Sugar is terrible for your body, but I continue to ingest Reese’s knowing the risk. Like the doctor said, “everyone has their vice.”
I hope everyone can take a moment and think about the one hang-up you have in your relationship. This could be a caregiving relationship, the relationship you have with your career, husband, wife, boyfriend, girlfriend or siblings. Is there something that must be brought to the table, discussed and forgiven? Is there some hypocrisy involved? You may be upset about one issue, when in fact, you may be demonstrating similar tendencies, only in a different context. In Thailand they say “same same, but different.” Enjoy the healing and forgiving process.
I love to read…yet finding a long enough stretch of free time to sit down, unwind and read a good book is few and far between. For three years a friend of mine has recommend I read Annie Freeman’s Fabulous Traveling Funeral by Kris Radish. After two and a half years of suggesting the book, she finally purchased the book for me for my birthday this past March. It is now the middle of June and I have finally managed to find a few seconds to read. Unfortunately the few seconds were in public places such as airports and planes (I do not recommend reading this book in public if you can at all avoid it.)
As with life, time slips away from you and you become wrapped up in all the activities life throws your way: relationships, education, children, careers and for many of us, caregiving. Annie Freeman lived a beautiful life, surrounded by amazing women and a blooming career. Unfortunately Annie’s journey ends early after losing a battle with cancer. Have no fear readers, it gets better.
Before Annie passes away, she takes the time to plan a traveling funeral. She does not want the ones she loves to grieve her death, she wants them to celebrate her life. Shortly after her death, her ashes are delivered to one of her closest girlfriends, Katherine, in her favorite shoes; a pair of red Converse. (Yes, you read that correctly. The ashes are in red converse! How can you not already love this woman?) Along with the ashes are instructions of what to do next; Katherine is to contact four other woman who’s names are in the instructions, and let the know Annie has planned a ten day extravaganza to five separate locations that Annie held dear to her heart. Annie’s ashes are to be scattered at all five locations in a way these five women see fit.
Of course the women hesitate when they hear of the adventure they must depart for in ten days. What about their jobs? Their husbands, lovers and children? What if they don’t get along with the other women? Each woman decides individually that the trip is something that cannot be passed up.
Throughout the ten day adventure the women dive deep into themselves and rediscover the self they have lost over the years. They learn to listen to their intuition and be spontaneous. The story is downright inspiring!
Now why in the world would I recommend reading a book about a woman who has died, another woman who constantly flashes back to the death of her mother, a hospice nurse, a young woman caring for her ailing mother, a retiree who has lost her way and a slightly psychic advocate? Two reasons; because we all lose a bit of ourselves through the caregiving process, and the loss of a loved one can be devastating. The book constantly reflects on how funerals are for the living; so why not switch it up and make it a celebration.
My mother had a similar outlook on her own death and funeral. It was her hopes that we would all celebrate her life and not mourn her death. (Let’s be realistic, there was plenty of mourning.)One month after my mother passed, my brother, father and I filled three spice jars with my mother’s ashes and caught a flight to Hawaii.(My mom was a phenomenal cook and we felt the spice jars were very apropos; kind of like Annie’s red Converse.) We placed one jar of ashes on her favorite western facing beach so she could see the sunset for eternity. The following morning we placed a second jar of her ashes on an eastern facing slope so she could see the sun rise. This location was a great debate because my mom was not exactly a morning person. Then we jumped a one way flight to Bangkok with one vial of mom’s ashes left in search of the next perfect beach to lay her ashes.
After years of having every moment of our lives planned, between doctor appointments, medication frequencies and treatment, the freedom to do what we wanted, when we wanted, was liberating. Not having a clue as to where we were or the ability to speak the Thai language, forced us to think outside the box and live in the moment.
Have you lost yourself? When was the last time you did something spontaneous or outrageous? I realize that taking off to a faraway land may be too much for some of you to fathom, so start small. Have a girls night out and go dancing if you haven’t been out on the dance floor since the day your children were born. Turn the radio as loud as it can go when you are home alone and sing to your cat. Join a kickball team. Find someone to relieve you of your cargiving duties for a day or a weekend and head into the hills. Once you are in a secluded location, read a book, or better yet, scream at the top of your lungs. I have faith that you can find the secluded location; the screaming part is tough. The act of opening your chest and screaming when you are wound so tight and “responsible” is harder than you think.
I am totally inspired by Annie G. Freeman and her amazing friends Katherine, Jill, Laura, Marie and Rebecca. I hope you too will be inspired and motivated to do something off the wall and spontaneous.
I am one who tends to believe the universe has a plan and if I pay enough attention, I may get some of this journey correct. Lately I have been receiving signs from left and right regarding the concept of forgiveness and how important forgiveness is in our everyday lives. As I sat down to write this, I turned my iPod on to “shuffle”, waiting to be inspired. The first song to hit the playlist was Wish You Were Here by Pink Floyd. Okay, okay…I’m listening and I get it! I also agreed to share the good, bad and ugly with you when I agreed to begin writing my advice. So here it goes:
I am hard headed. Huge shocker, I know, as I’m sure that comes as a huge surprise to most of you. It was a defense mechanism growing up because my mom had a tendency of consuming one too many glasses of wine on occasion. I am not pointing fingers, nor am I taking away from what a wonderful parent she was; I am simply stating a few facts. When you grow up the child of an alcoholic, there is subtle trauma involved and certain behaviors send up red flags. She was never loud, abusive or mean; she kept to herself, read her book and drank wine. But her slurring of words drove me up a wall once I was old enough to understand why she was slurring.
You can imagine that once they started medicating my mother for her pain, the side effects of the drugs where similar to that of someone who had consumed too much alcohol. Her reflexes were slow, her ability to make eye contact diminished and worst of all, she slurred her words. Initially, I could not stand her behavior. No matter what she did, I was angry with her. Because I was aware that she could have controlled her slurring in the past by not consuming, I had a hard time moving on and realizing she was not in control this time. It was becoming obvious to other family members that I was going to need to seek help regarding my inability to move past the word slurring, because there was no way she was going to be able to get off the pain medication any time soon.
After setting my ego aside, I found a therapist in my hometown who “understood me”. This woman had lost her mother when she was nineteen (I was twenty-one) and her mother had been an alcoholic as well. Although these things had been trauma in this therapist’s life, it comforted me knowing she understood exactly what I was going through. I felt better communicating with someone who had life experience, not someone who had read about this situation in a text book. I learned a ton about myself during those therapy sessions and was able to move past the slurring triggers that set my head spinning.
(PS -Heart Of The Matter by Don Henley is now on the iPod.)
Then came the verbal abuse and the tongue lashings that started after her initial chemo sessions. Holy Moly! There were times you would have thought that World War III was breaking out in our house. Her comments came from a place of pain and fear (which of course I can see now), but in the heat of the moment, her words were as sharp as knives. The arguments usually started over matters of control. She had been a completely independent mother with a husband who was a partner, not a superior. She had led the life she had wanted and now she was totally incapable of doing anything for herself. She had to rely one hundred percent on either myself or my dad… and it drove her nuts. She would make frequent comments about how she didn’t need me around (even though I had given up a life of leisure living in Hawaii and sold my home there), and that “no little punky kid was going to tell her what to do.” Obviously I was not a “punky kid” and she did need me around.
It was later explained to me by my Auntie, after my mother confided in her, that it killed my mom knowing I wasn’t out living the life I dreamed because I was taking care of her. The truth was there was no other place I would have wanted to be. I chose to come home and care for her. No one forced the task on me.
So what bit of information can we gleam from everything I just regurgitated to the paper? After talking about this with several individuals in similar situations, we have come to one conclusion: in a sick and twisted sort of way, her hurtful words came from a place of love. It is hard to show your weaknesses to others, and you tend to only show weakness to those you trust and love the most. She was expressing her fear by lashing out, which of course is not the healthiest way of going about it. Nonetheless, it’s how she chose to deal with her fear, and I needed to learn to forgive her for her inability to communicate.
Caregiving is like any relationship; it requires communication and must be nurtured. Unfortunately, the person you are caring for may not be quite themselves anymore. Know you are not alone, look at the situation from “outside your bubble” and do your best to forgive. The time may come the person you are caring for will no longer be present, and you may find you need to forgive yourself as well.