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My Journey With Mom & Self Care

Chef Susan Teton Campbell

Self Care

My heart is busting with grief today as I read about another shooting, and another person crazed out on pharmaceutical drugs. A Father is crying out about guns while most people don’t realize there might be a gun in a pill. Now, I am not saying the prescribed pills made him go crazy, but it is worth noting that every person who has committed a massive act of violence in the past 15 years was on, or had been on psychoactive drugs.  Most of them were young. But, psychoactive drugs are just a drop in the flood of physical, mental and emotional alterations from other meds such as addictive painkillers and opiates.

I am especially drawn to the effects of these opiates and painkillers after my last visit to Mom’s. Again I spent 4 weeks in her tiny house, absorbing the crazy world of their long term effects, not only the health of her body, but their effect on her inspiration, motivation and the human drive to express and create.

My Mom has become my teacher. She has shown me how I do not want to live, and even more importantly how I want to live out my remaining years. I write this for you, because I can see from my experience with her where we are headed. I see that we must become aware and impeccable with our choices today because it is what we do today that builds our body and life of tomorrow.

Mom has been taking 4 Vicodin a day for 15 years. She has been taking sleeping pills as well, plus many more other medications as prescribed for various reasons. The cycle began with Vicodin s for the pain in her colon from Crohn’s disease. Instead of addressing and healing the underlying condition of the intestinal wall, it was covered up with opiats. Perhaps the Vicodan would have been good short term to get her through a period of time of discomfort and to facilitate her healing, but it was the only remedy ever considered. 

What this practice did over time was diminish her inspiration and motivation for her to take any other action toward healing her fragile intestinal system. She was never even presented with an option for healing. Her diet of Vicodin consequently resulted in her loss of appetite, which then led to malnourishment. The loss of motivation further led her to a diet of Insure – a can that was easy to open. The Insure, along with the Vicodin enhanced her addiction and led to severe constipation. Severe constipation led to laxatives, diapers, pain and discomfort. With inspiration and motivation gone all that was attractive was a life glued to her bed and TV.

This is a brief picture of how each symptom builds upon another until the quality of life is so altered that all that is left is existence without an appetite for other more fulfilling options that life can offer.

The addiction to the drugs/meds, led to the addiction of a lifestyle that consisted of very little travel, no meaningful work, loneliness, premature dependency, disorganization, fear, shame, embarrassment, Dementia, and the saddest part are the faded dreams unrealized.

In hindsight I did not totally comprehend what her lifestyle of addiction really meant until I visited her again this past April.  When I first arrived my Mother slept for 3 days. I sensed she was drugged and investigated eight of the meds she was taking.

One of them was for her dementia. The side effects were drowsiness. I decided to wean her off of it, lessening the dosage each day. She began to wake up and participate with more life in the following days. I made an appointment with the doctor to go over all the medications. We had to wait a week.

Then the chaos started. Two 911 calls were made due to the severe pain in her rectum. On the first visit they gave her an enema but nothing came out, if you know what I mean. During the next two days the confusion was insane. She would take laxatives again without telling anyone, and then forget that she took them. She would go to the toilet all night long, just releasing dribbles. Then she would sleep during the day. This meant no sleep for me since I was up with her during the night. The diarrhea resulted in a loss of electrolytes making her severely weak. In an effort to help her I tried everything I could think of to provide her relief. I failed. Upon further investigation we thought she might have a growth of some kind. Another 911 call. This time I wait and talk with doctors in the ER.  I tell them all the meds she is on and ask that they do an ultra sound to check for a potential block or growth. The doctor was amazing. He told me they would give her three enemas and then if nothing, he would manually excavate the colon. I looked at him in amazement. Are you serious? I am sure you can imagine the visual I conjured up in my mind.

She was cranky and I don’t blame her. The nurses were amazing, kind and compassionate. I decided to leave and let them handle her, as they were much better at it than I. It was 9:30 PM and I was hungry and tired. I left her to their care and proceeded home. The doctor called me at 1:30 AM saying she was released and I could come and get her. Oh darn, I was hoping they would keep her for the night – or longer. I was so tired and needed a space.

When I arrived at the hospital to pick her up the doctor told me he manually removed a few large (fist full size) balls of hard black fecal matter from her colon. I just stood there and stared at him again, getting a visual of what he went to medical school for. He told me he sees this all the time. Ouch.

As they wheeled Mom out she complained the entire way to the car saying, “I am never going back to this hospital again, they did not do a thing. They would not give me a blanket or anything, and I was freezing.” OMG, she had already forgotten the entire experience. Well, at least there are some advantages to Dementia.

The next few days she was able to absorb the benefits of fresh orange juice, steamed veggies, and a fried egg and toast. She blossomed. It was incredible to watch her bloom like a dry flower being watered.

This lasted a couple days until her addiction to Insure kicked in and she went to the store and bought several cases. Then the cans began to open and she refused the food I made because she was just “not hungry”.  The vicious cycle began to start again.

A couple days later the real sign of addiction reared its ugly head again when she misplaced her brand new prescription of Vicodin. We could not find them anywhere and she could not remember where she put them. I would explain to her over and over again that she misplaced them, but she did not remember. She thought I hid them from her. I tried to get more but the pharmacy and doctor would not give out another prescription because it is now a controlled substance. I thought that was an interesting word, “controlled”, because that is exactly what these drugs did to her. She was totally and completely controlled by them.

 She began to go through withdrawals and the confusion and chaos that ensued was more than I could ever explain here or more than you would ever want to know. Let’s just say that the bottom line of where this vicious cycle leaves you is complete dependency on the pharmacy and others for care.   

What I came away with was a deeper understanding of what this addiction to opiates caused her life. I had been witnessing her decline for over 15 years. When my Mom would say she was too lazy to make her own food, I remember that I judged her for her laziness. When she would cry and say she wanted to get the children’s songs, that she wrote when we were youngsters, published, I would give her instructions of how she could proceed, but she never did. When she longed to have friends over or go places and sing, she would end up giving into her bed. When I tried to teach her how to use her remote control to access the TV guide, she could not even entertain the concept of learning something new. I never understood it totally and I judged her for being so lazy, and not having any will to at least try.

After this last trip I realized that her will had been robbed from her through medications that dimmed her light, and stole her inspiration and motivation. I saw how the cycle had caused a system of living that now depended on the medications and then more medications to deal with the long-term side effects. 

I wondered, “Could she have chosen differently with the beliefs and mindset that she grew up with?”  I am not so sure. She believed that the doctor knew best, and that medicine cured. She felt that any other type of healing modality; an herb, diet or anything that resembled a healthy alternative approach meant that is was not “real”. She needed, wanted something stronger. I am not criticizing her choices, although I sure used to. I am not even saying she should have done things differently. What I am saying to myself, and to you, is that our elders are our teachers now. They are showing us the quality of life inspired by the path they chose. Now, as we become the elders, we might be able to choose from knowledge and wisdom rather than ignorance.

What do you want? Are you on medications now that may have long term effects? Is there something else you can do to heal or alleviate your symptoms? My Mothers doctor was not nearly as shocked as I was at his new duties of cleaning out colons. He confessed to me that he sees this all the time. It is becoming the new norm with the elderly. 

Although I am sure we are all doing what we can for self-care, perhaps we must become more wise and prudent of our practices today.  Bad habits are a form of addiction that form a lifestyle that can become a rut. Before we know it, years will have passed by, and all of a sudden it might be too late.

As I reflect on my own life and self-care I realize that I have created some very good, and some very un-healthy habits. I am seeing areas of my daily practices; mentally, physically and emotionally that could use a boost.  I am pondering my deepest needs and learning not to act out of habitual patterns but instead form new self care practices so that the light of my motivation and inspiration can still burn bright.

In many of my late night phone calls with my Mom, I sometimes hear that a flicker of inspiration still lives in her to actualize her dreams, but her lack of motivation pushes them into oblivion where they lay dead. Yes, she is 90, and I get that faded dreams are inevitable, but I find it sad that someone might feel, at the end of 90, that they have failed rather than lived. 

This is a difficult story to tell because there are so many underlying viewpoints and energies floating in the existence of life. My motivation in sharing this story is to bring up the act of “self care” and look closely to what it means without the veil of illusion. I hope to dive deep with you and others as to what “self care” really means and how we can rally to the challenge to care for ourselves with love, respect and wise choices so that we can live out our dreams, be a model for those that follow, and feel complete at the end of our journey.  

 

 

 

 

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Visiting Mom - All of a Sudden My Life is Different

All of a Sudden

My arena is changing, as is all life. I just noticed that mine changed enough to seem like it changed-- all of a sudden.

Do you know that place where “all of a sudden” just happens?

All of a sudden you will need a haircut, your jeans are too tight, or you notice wrinkles on your face. All of a sudden your bank account is empty, and you are getting old. You know it is coming, but you don’t notice until the effect has accumulated enough to get your attention.

This just happened to me. I went home to visit my family and some close friends. After fourteen months of island living, I reluctantly boarded a plane for LAX. I was about to enter a world familiar and yet alien, both at once. I wasn’t on the plane for more than an hour, when I started sneezing. I landed sneezing, red nose and stony eyes. Exhausted from getting ready to make the journey (it was now 10 pm), I boarded a shared van and braved the freeways to my Mom’s house in Costa Mesa, CA.

My Mom greeted me from her apartment, her pink door wide open in an elder-housing unit, within a very short walk of a large park, a library, fire station, The Coffee Bean, Sav-On Drugs, FedEx Kinko's, a stellar yoga studio, 24 Hour Fitness, AT&T phone store, UPS Mail Store, Mothers Market, Trader Joe’s, Edwards Cinema Complex, the bus stop, Bev Mo Liquors, plus: shoe stores, used clothing stores, baby furniture and so much more.

I make a bed on her couch, with a box of Kleenex close beside me. The fan is on to help drown out the TV, playing in the small room next to me. The patio door has a stick in it to keep us safe from potential intruders, and the night-light is on in the kitchen, three feet from my head. The bathroom is twelve feet away with a night-light, too. There is something cute and quaint on every single counter, table and wall. There are family photos everywhere, along with large posters: photos of Clark Cable and Marilyn Monroe. Mom’s makeup mirror and makeup are on the edge of the bar that divides the living room and kitchen. There are rugs everywhere, and tiger striped pillows, along with a guitar and piano. It is funky, colorful, with a sense of organized mess. The person who put this house together knows exactly what she wants. She is messy, but most the time she is (at least) consciously messy.

The bottom line is that her house feels inviting, cozy and loving, even though dusty and crowded. Despite loud trucks unloading their cargo at 5am, when it is still dark, the hum of the 24-hour television, the earplugs hurting my ears, and the small too soft sofa, I sleep well. I guess it is because I am at home. This is Mom’s home and she is the one with whom I have spent most of my life. She is home to the deepest part of me – the good, the bad, and the ugly – all wrapped up together, to recall my origin.

Mom is 89. She runs the show in her apartment. I try desperately to make some space for my things, thus moving some of hers. I don’t think she will notice. She does. She drives, and lives on Insure and zucchini cakes. She is still very cute and how she looks is still as important as it was in her days as a young teen, when she worked in Hollywood theatres as an usher.  She won’t step out the door without her lipstick on. And, I better have mine on too, or I will hear about it.

What I was not prepared for in any way was her memory or lack thereof.  Yes, she was forgetful last year and repeated stories to me over and over, but the stage at which her dementia has progressed is surprisingly alarming. It takes me several days to catch on. I would forget that she forgets. Simple messages about where I am going and when I am coming home are thrown to the wind. When I ask what she would like to eat, I always get the same answer, “Nothing sounds good, but if you make it, I might have some”. After a while, I quit asking.

Doctors call me and ask that I monitor her medications. While there I catch on that she was taking more than seven! I begin to wonder if her four doctors ever conversed. Then, I find prescription bottles tucked in her bed – some empty and some half full. When I try to create order, she gets furious and hurt by my efforts. She feels helpless when reminded of her age, all the while using every bit of her spirit to keep motivated and alive. She is sick, has Crohn’s Disease, and takes four Vicodin a day plus sleeping pills, blood thinners, steroids, antiviral meds, and more. She is in pain 24-7. I am terrified to drive with her, yet she drives just fine, as long as she is within her one-mile radius.

All of a sudden, my Mother is an old person, with dementia, and she needs more care than ever before. All of a sudden, I am the oldest of four, who is caring for her. Last year, she could still get dressed up to go out and sing (which she loves to do and is good at). This year, she declines. She even declines a cocktail, which I make myself every night, to cope with my confused feelings. She once commented while I was there, “Oh God, I don’t want to grow old and not drink”. All of a sudden, what used to be fun is no longer.

Don’t get me wrong. My Mom is not someone who is going to go down without a fight. She dyes her hair flame red, wears big hoop earrings and always looks stylish and adorable. Her big blue eyes are still full of wonder and her sense of humor is vibrant. She is creative and once wrote a dozen clever children’s songs, which she longs to see published in the world.  She is a character that everyone loves. She is a family treasure, for sure.

There is more though, to my story of a family in transition. My sister, one year younger than I, is undergoing chemotherapy for ovarian cancer. It is stage one, and she is doing well, but even so, there is a shift in how we spend our time together, what we talk about and how we relate.

Last year, and all the years previous, when my siblings and I gathered, we would get dressed up to go out.  With lipstick on and in our sexiest clothes, we would head to a friend’s house or to a local bar for Happy Hour. This year, Mom and I got dressed up to visit my sister at the hospital while she receives chemo. Mom insists on driving, which terrifies me. I find myself putting vodka and tonic in my water bottle.  If my friends and students could see me now! I needed to medicate myself while visiting the medicated… Oh, my!

I am terrified to see my sister get chemo. Seriously, I do not think I can handle sitting in this large sterile room with IV’s attached to her. My world is so radically different and I feel so ungrounded. I tip my water bottle, containing my secret potion, and ease into it.  My sister is not the only one there. What is happening to our people? I am overwhelmed and pray for help. I finally relax and begin to settle into acceptance. I see that this is my opportunity to love unconditionally, to be in grace with every moment. I am shocked at my inability, at times. Vodka helps.

Looking back, I wish I could have laughed at all the insanity, the chaos and looniness of it all. While I was there I just keep acting like the eldest of four children; taking care and fixing as much as I could.

I finally came to experience, and to be, just loving and accepting – sort of. No matter what any of us are doing, we always have the choice of how we will “be” within an experience. This is what matters most. Not that “doing” is not important. But, if “doing” comes with crankiness, anger or resentment, it is better left undone. No matter if my Mom argues with me about what she said, or screams at me for intruding with her doctors, or my sister has decided to go a route I could never imagine, how I “AM” with them and me is what matters.

In retrospect, I wish I could have been more fun. I wish I would have listened to my Mom’s stories over and over, instead of reminding her that she already told me. I wish I had spent more time watching stupid TV shows with her, and participated more with her movie star gossip. I wish I could have listened to her favorite radio show, when she asked me over and over again to join her. I was just too busy, it seemed, and honestly, too uninterested. I was scared, too. Is this where I am going? Oh, God!

When I come home, my nerves were fractured, and yet I had to show up for a previously committed full schedule for a couple of days. I am so emotionally exhausted and ill equipped to respond when asked, “How was your trip? Did you have fun?” I want to scream, “NO!” It was not fun. There were high moments, but I have not had time to process the profound “all of a sudden” changes to my life, at home, yet.  I feel confused and so far from the “peace of being” I know so well. Where did I go?

Two days after arriving home, I finally have the space to go for a walk on one of my favorite beaches. I go early. There are few other souls there. I heave a big sigh when absorbing the look and feel of the trees and the vast ocean that lay before me. I approach the water’s edge of soft lapping waves in a day-dreamy state. The moment the water touches my feet, a stream of energy erupts from my being and I begin to cry. The cry turns into a sob, a loud sob as I progress down the beach. Good thing there’s no one around, except the unseen ones who carry me and hold me through my mourning.

Clarity came with that cleansing of my nervous system. I was grieving that life, as I knew it with my family was “over.” A huge sense of sadness had come over me for the loss of what was. I was in deep mourning. I cried and cried with sadness and then all at once, gratitude washed over me. We had come so far, my family and I. We are fortunate in so many ways. Now, the place I have always journeyed to, called “home,” is different, all of a sudden. Perhaps that is what breaks my heart wide open. We have had such longevity together, and much of it is over. It went so fast!

The cleansing flow of grief made room for the fear that was buried deep within me. All of a sudden, I face the fact that more loss is just around the corner.

All of a sudden I am an elder who is facing a loss of my own.

My new challenge, which is really a very old one, is to stay in Grace with radically changing times. The only way I know to do that now is to stay very close to my center and “be” in the bosom of the vastness I call God.  Then, when “all of a sudden” comes again, perhaps I won’t need vodka.

 

 

 

 

 

 

 

 

 

 

 

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