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.
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.
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.
I had the pleasure of reading an amazing blog last week. As I was perusing my Facebook newsfeed, a post titled Being Retarded had been “shared” on a girlfriend’s page. The title alone was shocking. Having a developmentally disabled aunt, the word “retarded” carries a different connotation with me and my family than it does with individuals who have no experience with a truly “retarded” individual. So I clicked the link; my curiosity had me and I needed to know where the author was going with this title.
After a quick read and a few tears, it was easy to determine that the author of this post knew exactly where she was going with this post…and nailed it! Her name is Phoebe Holmes and she is the mother of four children, one of whom is developmentally disabled. The post discusses what it does not mean to be retarded, and very bluntly names instances in which our society’s limited vocabulary allows for misuse of the word. Then Phoebe moves into what it truly means to be retarded. Some of my favorite lines:
But what does it mean to be retarded? Well, I know what it doesn’t mean.
It doesn’t mean not being able to choose something for lunch despite 100 choices in front of you.
It doesn’t mean not being able to find your car keys.
It’s not something to describe yourself as when you’ve spilled your coffee, or tripped on a crack in the sidewalk.
In our household, being retarded means something different.
It means not being able to fully care for yourself.
It means not understanding what the doctor is going to do to you.
It means not being able to explain what hurts when something hurts.
It means not being able to ride a two wheeler. Or read. Or ever be able to live on your own.
The line that stuck out the most to me was “It doesn’t mean saying the wrong thing to a person.” As I previously stated, my aunt Kate (dad’s older sister) is developmentally disabled. She is capable of many things, unfortunately, living on her own and advanced tasks such as driving are not among them. However, someone many consider a handicapped or a disabled individual, I see as an enlightened soul. My aunt, who is unable to understand many of the “complicated” ways of adult life, is content and happy. She smiles and is always happy to see her nieces and nephews, watch the fire truck drive by and enjoy a matinée at the local movie theatre with Grandma. And more importantly, she feels emotions on a very basic level; like small children, who have not been corrupted or jaded by “life.”
I bring this up because there is one instance in my life, one communication between my brother, dad, Kate and I that I will never forget. When it was certain that my mom was going to be leaving this realm soon, we called the entire family and invited them to Chico to say their final goodbyes. Kate was not able to make it to Chico, but after Mom passed, she called us to check in. In a world where everyone else was not in control of their emotions, unable to grasp the situation or communicate properly, this “simple” soul was a calm eye in this violent storm. Her words were simple, sincere, honest and full of unconditional love.
It is important for me to remember those times, particularly as we get closer to Mom’s passing anniversary. I find myself becoming more manic as we move closer to the end of January. I wake up every morning, look at the calendar and remember what occurred this day, three years age; admit to ER, Mom’s going to be fine, Mom’s not going to be fine, Mom knows who we are, Mom doesn’t know who we are, call Hospice…you know how the rest of this story ends.
Thank you, Aunt Kate, for your ever-clear understanding of life and your unconditional love.
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.
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.
Life has an interesting way of opening new paths. I feel like in the last few weeks my life has been opened to a new world of women bloggers who pretty much kick booty and are totally inspiring. It started like this:
I have this amazing client who very quickly became a great friend. This client of mine had a client (don’t you love all this confidentiality stuff!) who had written a book about breast cancer. My client was not able to give me any information about her client, but with my permission would give her client my contact information. At this point, I knew a woman would maybe (or maybe not) give me a call, and maybe (or maybe not) would possibly accept a breakfast invitation. I didn’t know this woman’s name; I had no way of looking up her book or her blog.
A week or so later I received a nice phone call from a very chipper woman who agreed to have breakfast with me. I had no Idea what she looked like, she had no idea what I looked like, but we agreed to meet outside of my favorite breakfast nook at 10am sharp. When Jan Hasak walked up we made eye contact, smiled and shook hands. The formalities always crack me up.
It took us an eternity to order because there was no time for either of us to look over the menu. It was like you had put two old friends together; catching up on two life histories. Hours later I had a new friend, we parted with hugs instead of handshakes and I was seriously late for work!
Not only did I make a new friend from my breakfast outing, I was instantly opened to a world of breast cancer and caregiving bloggers. As I read through Jan’s blog, Mourning has Broken, I began to link to other blogs from Jan’s blogroll. From one blog to the next, leading me in new directions, the web of hope continued to expand. “Follow Me on Twitter” led me to hours of trying to open a Twitter account and interpret what the heck everyone was saying. More bloggers, more information, more caring…
Each woman and man has a unique story, a unique experience, and a unique writing style; I appreciate the humor some are able to portray. What I find to be more inspiring than the blogs themselves are the comments these individuals, separated by miles upon miles of land, leave for one another. The comments are warm, well thought out, and sincere. They are a genuine community of support and hope!
I have compiled is a small list of blogs you may be interested in checking out. If you have suggestions of other blogs worth discovering, please send them my way!
A fresh Chapter: Spreading Hope and Living on a Dream
Breast Cancer? But Doctor…I Hate Pink: Blogging my life with breast cancer, from suspicion to diagnosis to treatment. Now livin’ the Stage IV Lifestyle!
Brenda’s Blog : A Guide to Surviving Breast Cancer
Brining Up Goliath: The mundane musings of a wife, thriving in spite of breast cancer, and oh yes, motherhood.
CHEMOBRAIN…..In The Fog With AM from BC 2 AD: How chemotherapy saved my body and rearranged my brain…
Mourning has Broken : Sharing Reflections on Surviving Breast Cancer
Nancy’s Point: A Blog About Breast Cancer and Loss
RobCares : Caring for Caregivers
Single Shot Seattle : Quick wit. Fast fingers. Corny jokes no extra charge.
The Cancer Culture Chronicles: One woman’s inside view of living with breast cancer in today’s society
View from the Handicapped Space: For people who find themselves in lives they hadn’t anticipated: seriously ill, disabled or caring for someone who is.
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.
I have heard it explained to me a million ways, a million times; you are only as good to the person you are caring for as you are to yourself. For years I had no idea what in the world this meant. I had no time to take care of myself! I had errands to run, doctors’ appointments scheduled, treatments to attend, laundry, cooking, cleaning, a family business to help run and I needed to be available when ever my mom needed me (which was all the time.)
If you find yourself in a position of caregiving, it is because you care. Plain and simple, you are a caring person. With this trait of “caring” comes a long line of other behavioral traits such as being self-sacrificing. The self-sacrificing will eventually lead to “Burnt-out You” if you do not learn to harness in realistic boundaries. (Ha! “Boundaries?” I’m still not sure I know what those are.) I have always found it interesting that the caregivers I know are willing to do anything for the person they care for, but nothing for themselves. We run ourselves like rented mules without a single hesitation. We beat up our bodies both emotionally and physically. I found myself with adrenal fatigue, borderline anemic and downright exhausted. Yet never in our right-mind would we expect the same behavior from any other individual. In fact, we may be personally offended if the person we were caring for even contemplated doing half the work we choose to take on.
I’m sure many of you are saying to yourself right now “I didn’t choose any of this.” I disagree, sorry. I can appreciate that you feel like you didn’t have any options, however, we all have the ability to make decisions. You chose to become a caregiver and you chose to run yourself into the ground. I may not have realized it at the time, but I was being self-destructive. I chose not to ask for help.
Enough beating up on the caregiver! What should you do to care for yourself and improve your caring ability for the person needing assistance? Thanks for asking:
1. Build a team: You may believe deep down in your soul that you are capable of being everywhere, every time you are needed. It is a kind gesture, but totally unrealistic. The day will come that you are unable to do it all and you will need help. Having a team of people in place who are already aware of your situation will be very helpful. Knowing who is capable of doing which job is also important. Your younger brother may not be the best person to bathe your mother or write out checks for the monthly bills, but he is capable of running to the pharmacy and doing the dishes.
2. Take time away: You may not be able to take too much time away (another reason to have a “team”), but a small amount of time is better than no time. Don’t forget about your haircut, your massage, your “dog time” or your dinner date. You would never expect others to sacrifice their “alone time”, so don’t sacrifice yours. There is nothing selfish about needing your own space. I always felt selfish and guilty about being away…I am begging you not to make the same mistake.
3. Talk to a professional: The support system you had prior to being in this situation may not quite understand all that you are going through now. In my family’s instance, as with most families, we were all grieving during the care process, but we were all grieving a different sort of loss. My father was losing his life partner, while my brother and I were losing a mother. The types of hurt and frustrations were different for each involved. There were times we would reach out to one another and times we kept to ourselves for fear of hurting another family member with our concerns and anguish. It was a fine line.
Good friends are there to help you when you are down, but the truth is they may not fully understand or be capable of absorbing all you are putting out there. Everyone has their own lives and own issues…people only have so much energy for your issues. It was a tough realization when I concluded my friends were just as exhausted as I was about my life.
When I began talking to a neutral party I felt liberated. My therapy sessions became my time away; a time to reflect on Me. Learn to talk about you!
4. Eat Well: The Ice Cream Diet is a bad idea. The movies glamorize the depressed girl sitting in her pajamas on the couch with a tub of Ben & Jerry’s Cherry Garcia. I was that girl and I am telling you now, the only thing you get from the Ice Cream Diet is an ever expanding rear end. Your body is a well-oiled machine that requires good fuel if you want it to continue to run correctly. Plan ahead! If you know you are going to be at a treatment or appointment for an extended period of time, pack a meal to-go. There is nothing in the facility handbook that states you must eat crappy cafeteria food.
5. Exercise: Simple tasks that would otherwise continue to be a part of your daily regime may be thrown to the wayside. “No time” is not an excuse to let your body go. Getting up a few minutes earlier in the morning or taking a little time in the evening to walk, jog, yoga, swim, cross train or any other form of exercise can be very meditative and healthy. This can even be considered some “time off”; an opportunity to be inside your own head and to reflect.
6. Sleep!: Sleep equals recovery, recovery equal a healthy You. If you find yourself completely exhausted and sleep deprived, it is important to refer back to your team and delegate more jobs. Do not let your body break down.
Remember, it is much easier to maintain a happy healthy body that it is to rebuild one that is broken down. Take care of yourself!