Helpful advice for the journey ahead…
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.
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!
For those of you who are not familiar with the photo of Hawkeye, the Labrador retriever belonging to fallen Navy Seal Jon Tumilson, please take a moment to look. Mr. Tumilson was killed when his helicopter was struck down by enemy fire over Afghanistan in early August of this year. The photo you are looking at is of his beloved dog, mourning at his funeral. The image rips at my heart string every time I see it.
Now, what in the world does this have to do with caregiving and the caregiving process you may ask? Everything! As we have previously discussed, there are many arrangements and difficult conversations that must take place when caring for an ailing individual. Most people have a living will or trust in place, along with a DNI and/or a DNR and their final wishes documented. Unfortunately, on several occasions, pets are overlooked. Many times ailing individuals assume that a family member will assume the role of animal caretaker once the ailing individual has passed. In many instances, this may be the case. However, in several instances, these animals are abandoned at animal shelters or veterinary hospitals because family members are unable to provide for them.
I have a wonderful client who owns a small dog rescue here in Northern California. It was only a few weeks ago that she called me and asked if I approved of her bringing in one of her rescue dogs to her appointment. This sweet little pooches name was Poke. Poke was a ten year old, white faced, bug-eyed Chihuahua whose human companion had passes away. Poke had spent the last three thousand six hundred and fifty days on this woman’s lap, acting as each other’s best friends…and now this woman was gone. The worst part of this story is that the woman failed to make prior arrangements for her beloved four-legged friend. Her daughter was unable to care for the dog, and relinquished the pooch to the rescue center. As unfortunate as these events may have been for Poke, luckily he was able to be placed in a loving home, with a new lap to sit on. However, this happy ending is not always the case for these animals.
If you are anything like me or my girlfriends, who initially suggested shining a light on this topic (one girlfriend is a Veterinarian and sees these situations play out all the time), you would be mortified if your animal companions were left abandoned after your passing. When discussing final wishes with the individual you are caring for, devise a plan for the family members who cannot speak for themselves.
I would love to share a beautiful book with all of you, Your Legacy of Love: Realize the Gift In Goodbye by Gemini Adams. To be honest, I have had this masterpiece in my possession for quite some time, but have personally been at a loss on how to go about sharing it. Everything Gemini touches on struck a personal chord, particularly of loss. I could feel her pain and grief, as well as personally relate to the scenarios that have occurred in her life; bringing her to the question she asked hundreds of loss survivors:
“If one of your parents died, what would you prefer: to inherit their money, or a letter saying how much they loved you?”
The result: Over 90% yearned for a loving letter, not a financial inheritance.
The book begins with Gemini sharing her personal story and her journey; one many of us will be able to relate to. She is an incredible woman who has taken a seemingly catastrophic situation and turned it into something positive. She is open and honest about the pain and the grieving process, allowing those who have been there to confide in her, one page at a time. For those of you who have yet to experience “it” (being the D-word), this may be eye-opening. The hysterical sobbing, the quiet breakdowns in one’s own mind, the prescription and self-prescribed recreational drugs to get by and the “Move on Mantra” are all very real emotional and physical states one travels through while grieving.
Next she moves into “Lonely Landmarks”; special days, holidays or moments in time which hold a special spot in a grieving individual’s life. My first lonely landmark was my twenty-fifth birthday. Just two months after my mother passed, I was sitting on the most beautiful beach I had ever laid eyes on in Thailand…and I was completely miserable. I had waited my whole life to make it to twenty-five. I was going to be a college graduate, married, possibly on my way to having children, owning a home, a white picket fence, a dog in the yard, yada-yada-yada by twenty-five. (You get it). I had the dog in the yard, but that was it. I had nothing except an empty heart and a soul that felt robbed. I would have done anything to have my mom hug me that day and tell me how proud she was of who I had become.
What remains of the book are suggestions of how to leave a loving legacy of your own. Many of you may be reading now and thinking “I have not experienced the grief of which she speaks.” That is the absolute beauty of this book. It is written in a perspective to help everyone, at any stage of their life understand the value in leaving a positive legacy of their own. What if you passed away unexpectedly tomorrow? How would your family and friends feel? What information or “future surprises” would you hope to leave? A card for the wedding your brother has yet to have, a scrapbook to share with your young child when she/he graduates high school or a video left to your sister? The ideas suggested in this book leave those of us who didn’t think of it sooner yearning for such “future suprises.”
Thank you Gemini for your gracious suggestions and devoted nature to the grieving and healing process. Your Legacy of Love is a must read for any individual who is a brother/sister, mother/father, sibling, cousin, significant other or friend. Anyone with an open heart and willing to experiencing love will appreciate everything this book has to offer.
Once it has been established that a family member or close friend will require the assistance of a caregiver, what’s next?
First and foremost, the ailing individual and the caregiver (or group of caregivers) need toestablish what basic life necessities require help. Depending upon the progression of any given illness, an ailing individual may require little to moderate help, while more severe individuals may need to relinquish all duties to their caretakers. The plan must be flexible to accommodate changes as the illness progresses, and the possibility of additional assistance must be kept in mind.
You will notice that I said “it should be established amongst the ailing individual and the caregiver what basic life necessities require help.” It is very important throughout this journey to allow the ailing individual to retain as much independence and say in their own care as possible. Take the time to listen to their needs, wants and concerns. This is their life, and it can be very overwhelming for the ailing individual to relinquish control. Be considerate, respectful and patient.
Daily activities to consider when discussing the extent to which care is required are, but not limited to:
- Mobility and Walking- Can the individual move freely around their home without fear of falling or other mishaps. If mobility is becoming an issue, what adaptations can be made to the ailing individual’s dwelling to improve their position? Take into consideration physical deterioration as well as medication induced mobility issues.
- Hygiene-Is this individual able to maintain basic hygiene such as brushing teeth, showering and using the restroom. If some of these hygiene related activities require the assistance of a caregiver, take the time to determine which caretaker is best suited for this task. Respect the ailing individual and think “dignity”; a mother will probably not want to be showered by her son.
- House Upkeep- Basic duties such as laundry, vacuuming, mopping, yard-work and dishes can become overwhelming. These are simple tasks that can easily be distributed between several caregivers.
- Cooking- Can the ailing individual still provide themself with nourishment or is the task of cooking too much? Again, this task is easily divided.
- Driving and Transportation- This is a tough one! Try telling someone they can no longer drive…not fun. However, many people fail to acknowledge that they are driving under the influence while on several types of medication. It should be determined if the ailing individual is still capable of driving or if a caregiver should be designated to do the driving.
- Financial- Is the ailing individual able to afford and pay their daily living expenses? Who will take care of the bill paying financially and/or take time to do the bill paying?
- Medication- Is the patient lucid and aware enough to take their medications at the correct dose and the appropriate time? If not, who will be available to distribute the proper medication at the proper time?
The “assessment” of the ailing individual’s situation can be emotional and very difficult for the patient and caregiver alike. When dividing the tasks amongst the caregivers, I cannot stress enough how important it is to be sensitive to each task, the patient’s needs and allow the patient as much dignity as possible. In the instance that an ailing individual is unable to communicate their concern or need, be sure to consider what they would want or who they would want (more importantly, not want) to do a particular task.
I was having a very interesting conversation with a client last week about prescription medication, medication abuse, prescription regulation and other fun topics one would hope to discuss while getting a massage. It was so interesting in fact, I thought it would be something worth bringing up here.
This particular client suffers from a debilitating disease that causes muscle atrophy and serious nerve pain. She has been prescribed several types of pain medications, anxiety medications and anti-depressants. She brought to my attention how quick her doctors are to up her doses or change her medication. Most of her pain medications make her nauseous, so she opts for bodywork over opiates.
As we were having this conversation, she began to ask me several questions about how we dealt with the medication changes, medication disposal and other issues surrounding the mini pharmacy we were building in our kitchen. The conversation led to stories of negative assumptions, lack of trust and disappointment in the way our medical system deals with proper medication disposal. All issues that patients and caregivers alike will have to deal with.
For those of you unfamiliar with my personal story, I will give you a brief synopsis: My mother was diagnosed in 2002 with breast cancer; I was eighteen years old. In late 2003 she was given a clean bill of health. After a year of caring for her, I ran as far away as any young college student who was still living at home could run; Hawaii. After two years of living the dream in Maui, I received the call from my Dad stating mom’s cancer was back and in her spine this time. She had a few months to live. The call came in around 11am on August 14th, 2005. By August 15th I had my condo up for sale, my dog at the vet receiving proper medication to fly to the mainland and a flight home to California. I immediately stepped back into the role of caregiver, escorting mom to all of her appointments; which leads me to the first story about negative assumptions.
After several weeks of three different doctors prescribing numerous pain medications, it was apparent that a Pain Management Physician should be brought into the picture. By having one individual solely responsible for her pain treatment, there would be no negative interaction of medications or over medicating. The first step was to stop taking all the medications the other three physicians (Oncologist, Radiologist, GP) had prescribed and start from scratch. The first day we were prescribed a thirty-day supply of pain med#1. Mom was to take one pill every 4-6 hours as needed. (For those of you without a math brain, that is 180 pills of med#1). After four days, it was apparent that med#1 was not close to alleviating her pain. Not to worry! Mr. Pain Man had all kinds of things up his sleeve we could try. He chose to discontinue med#1 and prescribed a month supply of med#2. Med#2 was a more potent opiate than med#1 and should do the trick. After six days, Mom had given up on med#2 as well. The pain could not be touched. After several more attempts of trying to find the correct combination of pain medication, it was suggested that she try a fentanyl patch; a time released pain medication that she would wear on her skin. The only requirement was that there be a lock box in the house and that I would have to access to this lock box.
At first I didn’t understand what Mr. Pain Man was insinuating. Once I absorbed the accusations, I wasn’t sure if I should start crying or fly off the handle.
“Are you suggesting I am not responsible enough to give my mom her medication properly?” I asked.
“No, but I can’t allow you access to this drug. Do you know what the street value is on this?” He replied.
“Street value?? Uhhh…not a clue! But I can assure you that I would never do what you are implying!” I responded in a very defensive tone.
Then it occurred to me; this guy had prescribed us 180 pills of med#1, 180 pills of med#2, 180 pills of med#3 and 180 pills of med#4. Mom had only used 24 pills of med#1, 36 Pills of med#2, med#3 and med#4. That left us with a combined total of 588 pills of unused medication to dispose of on our own.
It was later brought to my attention, by Mr. Pain Man himself, that because of my age (now 21)and my nose piercing ( a tiny stud), I looked like a “shady” character. I then had the opportunity to heatedly explain to him that I was in fact a successful individual who owned a home and was living the dream on a tropical island, but was willing to give it all up to be by my mother’s side in her final days. Hows’s that for “shady”?
So where is the issue here and who is responsible? This is the million dollar question. I know Mr. Pain Man had good intentions and little choice in how much he could prescribe my Mom. Unfortunately, medical insurance makes it difficult to approve prescription and it was “easier” if Mr. Pain Man prescribed her a thrity-day supply of her medications. Most of the medications mom was prescribed required a “triplicate prescription”, meaning there were three copies of the prescription; one for the doctor, the patient to take to the phamacy and one for the state regulating body. If any of my mom’s medications had ended up on the street, it could have fallen back on Mr. Pain Man.
So what do you do if you find yourself with 588 pill of unused medication? I have my own theories about how our medical system should deal with prescription disposal and help control drug abuse, but I’m on my own in that department as of now. Organizations such as Hospice and our hospital recommend taking leftover medications and placing them in a gallon size freezer bag with coffee grinds, detergent and water. This concoction will break the medication down into a safe substance.
What one should not do is flush medication down the toilet or simply throw it in the garbage can. Please take the time to dispose of the medication properly. As of now, medical facilities and pharmacies will not accept surrendered medication; which brings me to my theories on prescription abuse and proper medication disposal:
In the incident mentioned above, my mother was left with 156 pills of med#1 when she was given a prescription for 180 pills of med#2. Had the medical doctor required her to surrender the 156 pills of med#1 once she received med#2, there would be no chance of our extra medication being sold on the black market, a family member taking the medication for recreational use or the patient having the opportunity to over-consume or abuse the product. I mentioned this is only my theory, so take it or leave it, but I believe that if the medical community (doctors, hospitals, pharmacies) accepted and disposed of unused medication, there would be a much lower change of abuse. But as of now, it is your responsibility as caregiver or patient to dispose of these unused medications in a responsible manner.
Assumptions. We all make them, whether we intend to or not. Remember what mom said about assuming? If you assume, you make an ass of you and me. This statement is all too true. How many assumptions have you made about another individual that have turned out to be unwarranted or untrue? I bring this subject up not only because I have been the target of unfair assumptions (particularly while I was caring for my mom), but because I find myself unintentionally passing judgment or making assumptions about others.
One of my largest pet peeves is when people who are perfectly healthy choose to park in a handicap parking spot instead of parking a few spots away and walking. I know, I know…that extra fifty feet can be a lot of walking….and you have had a long day of sitting behind your desk…and it will only take a second. Except what happens if in those few seconds that you are in the grocery store an individual who needs that parking place can no longer park there. Not only do they need to walk further, they may be unable to get their walker or wheel chair out of their car because there is not enough space between their car and the car next to them; hence the extra space with the fancy diagonal lines next to the handicap parking spot.
I bring this particular instance up because I see it happen time and time again. I find myself being the one to pass judgment on individuals who do not have a handicap placard hanging from their rear view mirror or handicap emblem marked clearly on their license plate. Glancing at vehicles parked in handicap spots to verify they have the proper documentation has become a secondary instinct. Slightly neurotic, I know.
As I have stated previously, my mother had cancer in her spine that caused her excruciating pain. The prescription pain medication she was given to cope with her pain caused several side effects, including fatigue and neuropathy in her legs. Because of these symptoms, she was given a handicap placard by the California DMV. When she was having a rough day, but still wanted to participate in everyday activities such as grocery shopping, we would take the opportunity to use the handicap parking spot (using our placard). On days when mom required the use of her walker, no one thought twice about us parking there. On days she chose to navigate the store without her walker, we would receive nasty stares from people (only on occasion). These people probably assumed we were using the space with no real necessity for it. From the exterior, my mom look relatively healthy; that is if you did not know her prior to her diagnosis. The looks and assumptions would drive me crazy! I would be known to stare back at the people as if to say “bug off”. Being “a mom”, my mom would always tell me not to worry about “those people” and continue on with our shopping.
There was another terrible “assuming” example at a restaurant in Tahoe City. My aunt, mom and I were enjoying a nice lakefront lunch. Mom and my auntie enjoyed iced tea while I treated myself to a glass of Chardonnay. It was fall, so my mom was bundled up in leggings with Ugg boots. Due to the neuropathy in her legs, I asked her on several occasions to wear shoes that fit properly, not oversized boots when we went out on the town, for fear she would trip over her own feet. My fear came true that day. When lunch was over and it was time to leave, mom stood up, took her first step and fell forward into the chair of the man sitting behind her. Instead of helping her up, the man stared at her as if she had over-consumed wine and was making a fool of herself. If I wasn’t so angry at the man, I probably would have broke down in tears. I wanted to scream at him “it was MY WINE you A**!”. I quickly picked my mom up, threw her arm around my neck and helped her to the car.
Just a few weeks ago my extended family was in town for my brother’s twenty-fifth birthday. My cousin brought his girlfriend, who happens to be unable to stand upright or walk and uses the a wheelchair. On the morning after the birthday celebrations, we chose to go to breakfast as a family before everyone went their separate ways. If we carpooled in one car, there would not be room for the wheelchair. My cousin mentioned that he carried his girlfriend places all the time and that not having the wheelchair was not an issue. We arrived at the tiny breakfast nook and my cousin tossed his girlfriend on his back like he had several times in the past. When we entered the restaurant, I was astonished by how many people stopped and stared at the “love-sick silly college student carrying his girlfriend.” Our waiter even made a comment to her about “how nice it must be to be carried everywhere” assuming she could walk if she wanted to. She was a trooper, accustomed to the stares and didn’t let the incident put a damper on her day.
I share these stories because I too am guilty of making assumptions about people and their situations. Next time you find yourself passing judgment or making assumption, take a step back and ask yourself if your thoughts are necessary. These stories also go to show that as a caregiver, growing some tough skin may be a necessity.