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.
I have to admit that I have been excited about and dreading this “thank you” post for quite some time. It’s like accepting a Grammy…no joke! I have so many people to thank for making The Medical Day Planner possible, and I will feel absolutely terrible if I leave anyone out. So here I go:
A big thanks to Robb Wolf and Nicki Violetti for introducing me (and selling me) to Erich Krauss, of Victory Belt Publishing. Who knew that brainstorming business ventures over delicious espresso would lead to this? Your constant support and backing means more than you know. I couldn’t have asked for a better surrogate family.
To Robert Strazzarino; the man with sixty-mile-an-hour fingers on the key board. Honestly, I’m not sure this project would have ever taken off without you! I remember sitting in your office, completely unsure as to how to make a prototype. Within four minutes you had ninty-gillion online printing companies up on your computer screen, ready to make my dream of The Medical Day Planner come true. Thank you!
To Chris Friedland; the only guy I know who you can invite to lunch, will give you the best (and most honest) advice, and then refuse to let you pay for lunch. I value your opinion, and thank you for giving me the confidence to pursue this project. I owe you some salmon sashimi!
To Mieken McNally; for not only being a fabulous friend and support system, but for knocking the attorney section of this book out of the park. Let’s be honest, without Mieken’s ability to turn something very complicated into something everyone can understand, none of us would be able to make it through the attorney portion of the book without falling asleep.
To Kelly Milton; for taking my vision for a cover and a brand and making it a reality in the first shot, when the “professionals” at the publishing house missed it by a mile. You are an amazing graphic artist and a life saver.
To Karina Bangay and Sara Scott; two women who stepped up and took over my business without a second’s hesitation after my mom’s passing, allowing me to travel, grieve and cleanse. It was during that travel time that The Medical Day Planner was conceived. I will forever be in debt for your kindness and selflessness.
To Patty Principi, Marlena McCrea, Deanna Leah and Gail Cafferata; my proof readers! Thank you for spending countless hours reading over the drafts of The Medical Day Planner and adding your own personal expertise. Without you and your input, this book would have been a cancer-guide, not an ailment-neutral guide. Because of your time and dedication, this book will help so many people.
To Erich Krauss of Victory Belt Publishing; thank you for taking a chance on a project that was out of your comfort zone and understanding the possible impact this book will have on so many caregivers and patients.
To my friends and clients; your listening ears and constant support have helped me maintain a consistent forward progression. Without even knowing it, you have lifted my spirits in moments of sheer desperation and angst – you know who you are.
To my Aunties; my mom continues to live through us, our relationship and, well… our fabulous girl time! You have done all you can to fill a void that is nearly impossible to fill. I feel your love every day and can’t thank you enough for our time away from the boys and our forever-bond.
To Maile; my “super-tinks, wide-mouth bass pittt-buuullll.” I realize many people might find it completely ridiculous and absurd to thank a dog, but this dog has been through more tough times with me than many of my friends. She snuggles with me when I can’t get out of bed, licks my tears when I can’t put a smile on my face and is still oh-so happy to see me when I come home after eighteen hours of work. She was the first “person” to console me after I received the call in Maui that my mom was sick again. She made the journey across the Pacific and uprooted her happy beach life in Hawaii to become a California dog. Her unconditional love has allowed me to never feel alone, even when I wasn’t capable of communicating my need for comfort and consoling.
And to my men;
Oh, Dad! It is obvious to so many that none of this would have ever come to fruition without you. The constant “how is the book?” “do you need anything to finish to book?” and “what can I do to help?” kept me on track. You have kept me grounded, motivated and confident my entire life. I am quite possibly the luckiest daughter in the entire world.
Nick, my not-so-little, little brother; my ego booster and non-editing proof reader. According to you, everything I write is perfect, just the way it is! We have certainly had our moments, as most siblings have, but I couldn’t have asked for a better travel buddy, friend and roommate. You are the only other person on this planet who feels the same pain and sense of loss as I, and for that, we will forever hold a special bond.
Ryan; a man who has been willing to be a quiet support in the background of complete chaos for years and years and years. Your willingness to put your needs and wants aside and take “second place” to my mom, and then myself for all of these years is something I will never be able to repay. For a guy who is nearly impossible to wake once he is asleep, I find it amazing that you can sense the first drop of one of my tears hitting my pillow, and be fully prepared to deal with the waterworks that are about to flow. I know I wouldn’t have been capable of dealing with me over the past few years, so I thank you for being strong enough to not give up on me.
And last, but certainly not least, to my mom (MaaaM!) I have lived my life constantly trying to make you proud. I was fortunate to be born your child and honored to be able to care for you until the end. I am the woman I am today because you instilled strength, determination and a no bull-shit attitude into me at a very young age. (And let’s be honest, it’s probably a good thing I am half Dad’s genetic make-up.) Thank you for being as strong as you were through your entire illness. You will forever be my role model; because of you, I know anything is possible. I love you, Mom, and miss you every single day.
People release emotions several different ways. In the past, I was a victim of the Ben & Jerry’s eat-a-pint-of-ice-cream emotional release. My favorite form of energy release these days has become exercise; cross training with heavy Olympics lifts, high intensity “WODS”, swimming, hot yoga, a little boxing and dog time at the river. Have my days become a little obsessive? Maybe. But learning to tame my emotions have been a struggle my entire life, and something I am well aware I must work on. Better exercise than food…
One form of release I know I need to work on is allowing myself to cry more often. A few years back, after mom passed away, I allowed myself the opportunity to cry ALL. THE. TIME. As time has passed, I find myself making excuses as to why crying is not acceptable; move on, life goes on, suck it up, no one wants to deal with your crying, including myself. The fear of never stopping the flow of tears is very real, and the thought that my puffy eyes will be a dead give-away and someone will take pity on me is also not super appealing.
A few weeks ago I had an experience that has brought back my pro-crying mentality. I was sitting on our loveseat with my computer in my lap and Ryan was on the couch with his computer in his lap. (Very romantic, I know. It’s quite difficult living with two career driven individuals under one roof, but I digress.) We were both working on separate projects, but for whatever reason, the television was on, and National Geographic was airing a program about amazing animals. Instantly I knew the show was going to be a tear jerker and I asked Ryan to turn the television off. He didn’t…
The program continued with a story about a dog and an elephant who had become more-than-amazing friends while living on a sanctuary together. The story wasn’t even sad to begin with, but I felt the know growing in my throat. After the time I spent in Thailand, I have amazing respect and a soft spot in my heart for elephants. Not to mention I treat my dogs as children.
Being slightly jaded by life, I blurted out “what is the elephant going to do when the dog dies? Elephants live forever!” Ryan looked up at me in disbelief. Was that all I was getting out of this story?
The program continued to tell how the dog had broken her back out in a pasture and how the elephant had guarded the dog until the owners of the sanctuary arrived to save the dog. How the elephant wouldn’t leave the spot where the dog was hurt until the dog returned. And once the dog was better, how the elephant caressed the dog’s back with its trunk. Seriously, talk about tugging the heart strings!
Just when I thought I had survived, and the story was over, the narrator of the program decided to add a follow-up (which as far as I was concerned, he could have kept to himself). After the story was filmed, the dog had been mauled by coyotes and passed away. ARE YOU KIDDING ME?
The waterworks started. The ugly-cry I had been keeping deep inside my gut erupted to the surface and I became a complete basket case. So much so, I was forced to retreat to the bathroom and take a long hot shower while I cried…and cried…and cried. Obviously after several minutes of crying, I was no longer grieving the dog and the elephant; I had progressed on to my own real-life issues and grief I had been suppressing. Then it dawned on me; I had made it through the anniversary of my mom’s passing, my birthday and my mom’s birthday without shedding a single tear. “Not healthy, little missy” my mom would have said.
Although that particular cry-fest was a bit traumatic, I sure felt fantastic when it was over. A tension in my chest and gut that I hadn’t realized had developed was now gone. My fear of the tears never ending was subsided and I was only forced to deal with a little sympathy, which was actually quite comforting.
What is it about our thought processes and society that makes us feel the act of crying is weak? Do yourself a favor and let out a good cry once in a while.
Ah yes…it is that time of year again. April 15th is right around the corner and you are probably getting close to writing a nice check to the IRS. As the caregiving process continues, it becomes more and more apparent that tracking medical expenses is a necessity. Not only are medical expenses, well… expensive, most are tax deductible.
My first bit of advice for any person who has be catapulted into this world of hospitals, insurance premiums, deductibles, and co-payments is to have a meeting with your CPA. If you do not currently have a CPA, ask for referrals and get one. Once you have a relationship established with your accountant, ask what he or she recommends you start tracking and how he or she recommends you go about doing this.
Helpful Tip #1: Have an understanding of what is and is not tax deductible.
Deductible medical expenses may include but are not limited to (irs.gov):
- Payments of fees to doctors, dentists, surgeons, chiropractors, psychiatrists, psychologists, and nontraditional medical practitioners
- Payments for in-patient hospital care or nursing home services, including the cost of meals and lodging charged by the hospital or nursing home
- Payments for acupuncture treatments or inpatient treatment at a center for alcohol or drug addiction, for participation in a smoking-cessation program and for drugs to alleviate nicotine withdrawal that require a prescription
- Payments to participate in a weight-loss program for a specific disease or diseases, including obesity, diagnosed by a physician but not ordinarily, payments for diet food items or the payment of health club dues
- Payments for insulin and payments for drugs that require a prescription
- Payments for admission and transportation to a medical conference relating to a chronic disease that you, your spouse, or your dependents have (if the costs are primarily for and essential to medical care necessitated medical care). However, you may not deduct the costs for meals and lodging while attending the medical conference
- Payments for false teeth, reading or prescription eyeglasses or contact lenses, hearing aids, crutches, wheelchairs, and for guide dogs for the blind or deaf
- Payments for transportation primarily for and essential to medical care that qualify as medical expenses, such as, payments of the actual fare for a taxi, bus, train, or ambulance or for medical transportation by personal car, the amount of your actual out-of-pocket expenses such as for gas and oil, or the amount of the standard mileage rate for medical expenses, plus the cost of tolls and parking fees
Helpful Tip #2: Open a “Medical Checking Account.”
When it became apparent that Mom was going to be in this battle for the long haul, and expenses began to add up, we opened a “Medical Checking Account” at our local bank. Each month an electronic funds transfer was made from our family “Personal Account” to the “Medical Account.” Any expense that was questionably a medical deduction was purchased out of this account. Each month I reconciled the account via Quicken (any accounting system will do); each purchase was categorized based on category suggestions from our CPA. At the end of the year, we had a very organized financial outline of our medical expenses. By purchasing everything and anything we “thought” was medically relevant and deductible out of this account, we saved ourselves from “missing” any deductions.
It is important to know that when itemizing your medical deductions, you may only deduct the amount of which your care exceeds 7.5% of your adjusted gross income (AGI). Beginning December 31, 2012, you may only deduct the amount of which your care exceeds 10% of your AGI. Many of my clients at the sports massage office choose not to itemize because they rarely spend more than 7.5% of their AGI on medical care. Sadly, the moment you, your spouse or your dependent are diagnosed with a chronic illness, the 7.5% is easily attained.
Do yourself a favor; track your expenses and stay organized.
I have been working as a massage therapist for over five years now, mostly in the sports and pain management field. It was my mother’s cancer metastasizing to her spine and the incredible amount of pain medications she was prescribed that led me to the world of massage. It was our goal as a family to provide alternative ways for her to relieve her pain. I am happy to say that by the time she passed away, she was off of a significant amount of her pain medication.
Sadly, there are several misconceptions about massage; massage is a luxury just like a mani-pedi or a facial (both of which I’m sure I could find a way to make medically relevant, or at least psychologically relevant, but I digress), or that massage is meant for lonely men in Thailand. Incorrect! Okay, not 100% incorrect, as massage can be relaxing and wonderful, and lonely dudes may take advantage of massage in Asia (and all over the world). However, several studies have been done on the benefits of massage. Miami School of Medicine even has The Touch Research Institute, dedicated to doing research on the importance of the human touch, while The Department of Veterans Affairs has been researching complementary and alternative therapies for Post-Traumatic Stress Disorder (PTSD), including massage.
Massage has literally been around for millennia; dating as far back as 3000 BC in India, Egypt and China. Japan adopted massage around 1000BC, while the West took notice around 700BC in Greece and finally expanded with the Romans in 100BC.
Although massage has been manipulated (pun intended) through the ages, and techniques improved, the basis of massage remains the same; manipulate muscles and connective tissue to improve lymph functions and blood flow. Some basic techniques include efflourage (long, slow strokes),petrissage (kneading of the tissue, usually deeper than efflourage), stretching and friction. These techniques combined can be beneficial on so many levels, and for countless ailments.
• In the instance of lymphatic massage, or massage for edema, a very light efflourage is used to stimulate and move stagnant lymph up extremities to major lymph ducts and eventually processed by the body.
• Individuals recovering from surgeries such as mastectomies, reconstructions, amputations or other instances that cause scaring will benefit from friction and cross-fiber work. These deep techniques have been known to help break down scar tissue, improve range of motion and expedite healing time. One client in particular had such a substantial amount of scar tissue built up from her mastectomy that she was unable to fully lift her arm. After only a few sessions of cross fiber work, she was able to comfortably dress herself; something she had been struggling with since her surgery.
• Facilitated stretching is another fabulous technique used to improve range of motion. This active-assisted technique allows a therapist to take the client to their full stretch potential. Once in a full stretch, the client will isometrically contract their muscle for several second, relax, and repeat. The range of motion for the target muscle will increase as the individual continues the stretch.
Some interesting studies on massage and common caregiving issues:
Field, T., Ironson, G., Scafidi, F., Nawrocki, T.,Goncalves, A., Burman, I. , Pickens, J., Fox, N., Schanberg, S., & Kuhn, C. (1996). Massage therapy reduces anxiety and enhances EEG pattern of alertness and math computations. International Journal of Neuroscience, 86, 197-205.
Adults were given a chair massage, and control group adults were asked to relax in a chair for 15 minutes, two times a week for five weeks. Frontal delta power increased for both groups, suggesting relaxation. The massage group showed decreased alpha and beta power, and increased speed and accuracy on math computations. At the end of the five-week period depression scores were lower for both groups but job stress scores were only, for the massage group.
Hernandez-Reif, M., Field, T., Ironson, G., Beutler, J., Vera, Y., Hurley, J., Fletcher, M., Schanberg, S., Kuhn, C., & Fraser, M. (2005). Natural killer cells and lymphocytes increase in women with breast cancer following massage therapy. International Journal of Neuroscience, 115, 495-510
METHODS: Women diagnosed with breast cancer received massage therapy or practiced progressive muscle relaxation (PMR) for 30-minute sessions three times a week for 5-weeks or received standard treatment. The massage therapy and relaxation groups reported less depressed mood, anxiety and pain immediately after their first and last sessions. By the end of the study, however, only the massage therapy group reported being less depressed and less angry and having more vigor. Dopamine levels, Natural Killer cells and lymphocytes also increased from the first to the last day of the study for the massage therapy group.
Billhult, A., Lindholm, C., Gunnarsson, R., Stener-Victorin, E. (2009). The effect of massage on immune function and stress in women with breast cancer–a randomized controlled trial. Autonomic Neuroscience, 150, 111-115.
METHODS: Women, with breast cancer were assigned to a massage or an attention control group. RESULTS: Massage decreased the deterioration of NK cell activity occurring during radiation therapy and lowered heart rate and systolic blood pressure.
Field, T., Peck, M., Hernandez-Reif, M., Krugman, S., Burman, I., & Ozment-Schenck, L. (2000). Postburn itching, pain, and psychological symptoms are reduced with massage therapy. Journal of Burn Care & Rehabilitation, 21, 189-193.
METHODS: Twenty patients with burn injuries were randomly assigned to a massage therapy or a standard treatment control group during the remodeling phase of wound healing. The massage therapy group received a 30-minute massage with cocoa butter to a closed, moderate-sized scar tissue area twice a week for 5 weeks. RESULTS: The massage therapy group reported reduced itching, pain, and anxiety and improved mood immediately after the first and last therapy sessions, and their ratings on these measures improved from the first day to the last day of the study.
Grealish, L., Lomasney, A., & Whiteman, B. (2000). Foot massage. A nursing intervention to modify the distressing symptoms of pain and nausea in patients hospitalized with cancer. Cancer Nursing, 23, 237-243.METHODS: This article describes the findings of an empirical study on the use of foot massage as a nursing intervention in patients hospitalized with cancer. RESULTS: In a sample of 87 subjects, a 10-minute foot massage (5 minutes per foot) was found to reduce perceptions of pain, nausea, and relaxation when measured with a visual analog scale.
Field, T., Grizzle, N., Scafidi, F., & Schanberg, S. (1996). Massage and relaxation therapies’ effects on depressed adolescent mothers. Adolescence, 31, 903-911.
METHODS: Thirty-two depressed adolescent mothers received ten 30-minute sessions of massage therapy or relaxation therapy over a five-week period. Subjects were randomly assigned to each group. RESULTS: Although both groups reported lower anxiety following their first and last therapy sessions, only the massage therapy group showed behavioral and stress hormone changes including a decrease in anxious behavior, pulse, and salivary cortisol levels. A decrease in urine cortisol levels suggested lower stress following the five-week period for the massage therapy group.
Ironson, G., Field, T., Scafidi, F., Hashimoto, M., Kumar, M., Kumar, A., Price, A., Goncalves, A., Burman, I., Tetenman, C., Patarca, R., & Fletcher, M. A. (1996). Massage therapy is associated with enhancement of the immune system’s cytotoxic capacity. International Journal of Neuroscience, 84, 205-217.
METHODS: Twenty-nine gay men (20 HIV+, 9 HIV-) received daily massages for one month. A subset of 11 of the HIV+ subjects served as a within subjects control group (one month with and without massages). RESULTS: Major immune findings for the effects of the month of massage included a significant increase in Natural Killer Cell number, Natural Killer Cell Activity, and CD8. No changes occurred in HIV disease progression markers. Neuroendocrine findings measured via 24 hour urine sample included a decrease in cortisol and trends toward decreased catecholamines. Decreased anxiety and increased relaxation were significantly correlated with increased NK cell number.
Meek, S. S. (1993).Effects of slow stroke back massage on relaxation in hospice clients. Journal of Nursing Scholarship, 25, 17-21.
METHODS: Slow stroke back massage was provided for 30 hospice patients. RESULTS: The massage was associated with decreases in systolic BP, diastolic BP, and heart rate and with an increase in skin temperature.
Field, T., Cullen, C., Diego, M., Hernandez-Reif, M., Sprinz, P., Beebe, K., Kissel, B., & Bango-Sanchez, V. (2001). Leukemia immune changes following massage therapy. Journal of Bodywork and Movement Therapies, 5, 271-274.
METHODS: Twenty children with leukemia were provided with daily massage therapy by their parents and were compared to a standard treatment control group. RESULTS: Following a month of massage therapy, depressed mood decreased in the children’s parents, and the children’s white blood cell and neutrophil counts decreased.
Hernandez-Reif, M., Field, T., & Theakston, H. (1998). Multiple sclerosis patients benefit from massage therapy. Journal of Bodywork and Movement Therapies, 2, 168-174.
METHODS: Twenty-four adults with multiple sclerosis were randomly assigned to a standard medical treatment control group or a massage therapy group that received 45-minute massages twice a week for 5 weeks. RESULTS: The massage group had lower anxiety and less depressed mood immediately following the massage sessions, and by the end of the study they had improved self-esteem, better body image and image of disease progression, and enhanced social functioning.
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.
Alright, I believe it is time to get back to business. All Things Caregiver is about helpful advice for caregivers, and it seems to have morphed into a “Tory-pity-party” over the holidays and January. I suppose I could cut myself a break and allow grief and mourning to be a part of the care process (and it is), but I feel it is time to move on. Ahh…big breath…
As many of you are aware, I am a huge advocate for “quality over quantity” when referring to life. I was raised in a family that communicated their final wishes, and respected death. Most of my family members agreed that they preferred to pass when nature (or God, depending upon beliefs) took due course. As with most families, not everyone saw eye to eye, but most agreed ventilators and machines were not natural course, nor did they opt for treatments that limited their quality of life.
Before I continue, I would like to reiterate that I have no formal training in the medical field, only real-life experience. It is never my intention to offend someone’s treatment choices, unless of course you chose a treatment you are not comfortable with…then we may have words. I also respect those individuals who do want life sustaining treatment and choose not to sign a DNI or a DNR; every patient should make the choices that suit their needs and beliefs.
That being said, I do believe that “integrative” or “alternative” modalities are beneficial and can work cohesively with western treatments, allowing any individual to establish a treatment correct for his or her particular needs and belief systems, as well as improving quality of life. I was introduced to alternative treatments shorty after it was detected my mom’s cancer had metastasized to her spine. The prognosis was not favorable, and more importantly, she was in a lot of pain; which takes me back to our family motto of “quality over quantity.” If the oncologists were unsure if the chemo and radiation would do anything to alleviate the pain in her back, unsure if the holes in her spine would heal, unsure if the cancer had metastasized to any “soft tissue,” and unsure of how long she had to live, what was the point? The point was she had options. She could try the chemotherapy. She could try the radiation. She could pray to her God. She could do a rain dance with a voodoo doll. She could do whatever held her mind at ease, allowing her to sleep at night with her decision.
Initially, she opted to do a chemotherapy treatment as well as a 12 round course of radiation. The chemo left blisters in her mouth and the radiation burned her skin. She was uncomfortable and unhappy. With a “short” life expectancy, my mom decided it was “okay” to try something a “little out of the ordinary.” This is when things got good (wink, wink).
We contacted a local naturopath who had been recommended by a close friend. Having never been exposed to a naturopath before, the first time she was muscle tested was almost her last. She could never quite wrap her brain around the concept of polarity therapy and meridians, let alone understand how her fingers staying pinched or “going weak” had anything to do with her wellbeing. She eventually gave in to the treatments and started taking the supplements recommended by her naturopath.
Not only did this naturopath muscle test and treat patients during the day, he had a small massage school at night. I quickly enrolled in his classes and proceeded to learn everything I thought I needed to know about helping manage mom’s pain via bodywork. As the years passed, mom’s quality of life improved. We were able to wean her off of several pain medications, some of the bone in her spine had rejuvenated, and all in all, she was happy and comfortable.
Many people are not aware of alternative treatments, which is why I would like to spend some time focusing on integrative options. I am currently working on people within my “alternative” circle to write posts for All Things Caregiver. It is my hope to bring a better understanding of “alternative” modalities, including massage therapy, acupuncture, chiropractic, naturopathic, dietary changes and many more. Some modalities may seem awfully far out, while others may resonate with you. Please, keep an open mind and explore options within yourself you may not have considered in the past.
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.