Of Food and Caregiving (A Rant)

     Food is an extremely vital aspect of almost every human's life.  It's how we manage to function as human beings as it fills us up with the fuel necessary for us to live our daily lives.  It can be a source of great pleasure and the centerpiece of entertaining.  It can unite a disparate crowd or bring together a family.  Food is lifeblood, our source for almost everything that helps us be.  This is especially true if you're a caregiver.  If you're a caregiver, life can be so unrelentingly demanding, stressful, and punishing that often you're stuck with food as your one outlet to a world where you're actually nutured.  Even when you're stuck with eating slightly lukewarm food after serving everyone else first and foremost, food can still be a source of great pleasure.  Food not only fills, it fulfills -- our desire to connect to something that brings us pleasure and delight.

     But sometimes, when you're a caregiver trying to balance a heavy load, food can be its own burden, especially if you're trying to stick to eating healthfully.  This is why it can be common for a caregiver taxed with a lengthy list of demands to resort to consuming whatever is the quickest, most filling, tastiest food to consume.  Most of the time, this is fast food.  When my father was clinging onto the last vestiges of life, my family pretty much subsisted on cheap fast food -- McDonald's in the morning, KFC in the evening, and snacks in the interim.  We were too tired both emotionally and physically to consider the idea of dirtying up a full sink of dishes each day or whipping up a full meal of home-cooked food.  This had negative health repercussions on my mother and I that we both felt for years and years.  It took me such a long time to get back to somewhat good health, but that doesn't mean I've foregone all convenience food.  Far from it -- I relish any opportunity I get to bring something fast and easy to the dinner table, even though I love to cook, purely because it allows me more energy to devote to caregiving and ensures that my food will probably be closer to warm or perhaps even hot than "lukewarm".

     Food is often the last thing people think of when it comes to figuring out ways of helping out someone in the position of caregiving, and to be frank about it, I'm glad that's the case most of the time.  Quite honestly, you don't know how most people will end up cooking or if you'll enjoy what they offer up to you.  I think I'd only appreciate an offer of a ready-made meal from someone if I've been over to that person's house before, had that meal, and relished every morsel.  For example, if one of my cousins were to offer up a container laden with her spicy Japanese curry and another one filled with sticky white rice, I wouldn't be able to quantify my gratitude in words.  Some of my happiest food memories involve going over to her house and eating that very same meal, licking the spoon after my plate was empty and patting my full stomach with a broad smile on my face.  But if it's someone whose recipies are untested by my palate?  Perhaps I should try seeing if I'd enjoy it, but not if it's foisted upon me with the expectation that it be made my household's dinner, and especially not during a particularly taxing period when I'm trying to cope with a great many things.  In those cases, it would be better just to drop off a frozen lasagna or gift certificate to a "casual dining establishment".

     Speaking of frozen meals, there remains one type of frozen pot pie that is my go-to meal for when my mother is in the hospital and I'm having to shuttle from work to the hospital to home, or vice versa.  I'm not going to name brands because I'm not interested in giving free advertising, but it's a meal-sized pot pie that takes approximately one hour to bake in the oven.  That one hour, plus the approximately fifteen minutes beforehand that it takes to preheat my oven to the proper temperature to bake the pot pie, are gifts the unnamed frozen food company gives to me that allow me to come home and do all sorts of other things while waiting for the oven to preheat.  Then when I stick the pot pie in the oven, I get to take a shower, change into a comfortable nightgown, blow dry my hair, and attend to my pet's food needs before dining on a piping hot meal straight from the oven.  Best of all, it ticks all the boxes of taste and comfort that make it feel like a reward for having survived another day of being all things to everyone.

     Ultimately, that's what counts most of all when you're a hungry caregiver.  Some people who've never been put in that position might attempt to moralize and preach to me and tell me my food cravings are immoral and wrong and that I need to savor more healthful fare, and many times I will seek out healthier food that contains multiple servings of fruits and vegetables.  But when you're living a life where you are your last priority, where things have the opportunity to go very wrong very fast, where you're put in a position of having to be extremely responsible, the last thing in the world you want to put into your belly is a bland meal of vegetables.  It may be easy for some people to make "good" food choices because they get to have fun in their lives or they've found other ways of being a glutton (e.g. alcohol or drugs), or they're rich and/or famous and can afford the luxury of personal chefs and trainers.  But I don't have any of those options in my life, so I try to eat well as often as I can, but if I'm choosing to eat something rich, fatty, and nutrient-poor, I don't need a lecture from anyone about how much I'm harming myself or how irresponsible I am.  I am plenty responsible, and my mom's doctors and my superiors at work can all attest to that.  In fact, I'll go further and say that I am more responsible than anyone who permanently diets and exercises but who also spends a lot of time on "selfish" (i.e. self-centered) pursuits such as clubbing, dating, traveling or shopping.  They get to put themselves first in their lives, but I -- I don't.

Of Maturity and Caregiving

     I used to pride myself on my preternatural maturity.  I laughed in the face of anything animated or, heaven forbid, DISNEY.  I took fairy tales for what they were at face value -- classic works of children's fiction to be appreciated, but fiction first and foremost.  I enjoyed "Sesame Street" and "Mr. Rogers' Neighborhood", but mainly because they imparted great and ageless advice about how to live in this world and how to process that which you couldn't understand.  The only commercial children's show I ever liked was "Pee-Wee's Playhouse", because it was strange and esoteric instead of being soft, fuzzy, and babyish, or wreckless and irresponsible.  I used to sit in class and sigh whenever one of my classmates disrupted the teacher because I truly enjoyed my lessons and wanted to learn more from the teacher.  I took to playing reluctantly and only when I allowed myself that one little, minor frivolity (and even then, I preferred walking by the train tracks that cut across our play space).

     But when you have a parent who becomes direly ill, you're forced to grow up really quickly, no matter how mature you think you are.  When my father first developed cancer, I wasn't even in fourth grade yet.  I wasn't told exactly how ill my dad was, but I knew somewhere in the back of my mind that his condition was serious.  I remember joining him as he went to his chemotherapy and radiation appointments and being aware that he had to do something in that strange building with the pastel linoleum floors, but I was never made aware of what exactly he had to do.  I just remember his having to be in bed a lot, my having to help Mom do the household cooking and cleaning, and his going into the hospital to "take the cancer out"; he was recovering from that surgery when my grandfather died.  Mom later told me she suspected Grandpa made a deal with God to go instead of Dad, because Grandpa had a grown daughter (my mom) with a family of her own and I was still a little girl.  There's no way of knowing whether that was true or not, but it's a touching thought to think.

     Thing is, I never really got involved with what was going on when I was little, but I think it still had a slight impact on how precociously mature I became after Dad went into remission and we had fully mourned Grandpa's loss.  I think that's why I started to lose patience with other people's frivolities and trivial concerns.  My true maturation process didn't begin, however, until my dad's cancer recurrence when I was in college.  That was the time when I was allowed to be fully informed of everything and given the opportunity to participate in the actual caregiving process.  This is when I went to school learning all the basic ins and outs of true caregiving and how it is to have a parent who is helpless and in real need of your aid, much like I was when I was little and I needed my parents' help.  Having to bury my dad, though, forced me to grow up at warp speed and changed me completely.  Even now I view my life in terms of before and after.  Then when I was thrown itno the role of sole caregiver for my mother, I had to do considerably more maturing as a seemingly endless list of new challenges, trials, and difficulties.  Now I feel as though I'm approximately sixty years old on the inside, even though chronologically I'm in my early thirties and my face tells the lie that I'm about 26.

     You want to know something?  When you've had to do all that maturing and growing into a hyper-aged individual, you tend to want to regress somewhat.  There now lies within a small part of my being an inner child who wants to revel in everything that is silly, fantastic, and immature.  This small part of my being wants me to actually start watching Disney movies, linger over the humorous cards at Hallmark and giggle inappropriately, believe in fairy tales, give myself completely into the world of play and fantasy, and be the big, hopeless romantic I never really was.  I have no idea why this happens, but it has been happening to me and I have a feeling that as more duties and responsibilities are laid upon me, that part of me that is that silly, cheerful little girl will grow and I'll find myself doing things that the much younger version of myself would consider objectionable.  Maybe this means that if I ever found myself in the role of parent, I'd be the most excitable, fun parent around.  Maybe any future children of mine would think their old mom is being silly, stupid, or embarrassing.  I wish I could explain it to them how or why I felt the need to channel forth these impulses and emotions, or impart to them the history of me and who I was when I was their age -- a serious, sober woman-child who felt more connected to the world of adulthood than her own world.

Ins and Outs Stuff, Part Two.

(Or when I become extremely bitter about everything.)

     One of the things people don't tend to consider of a caregiver is that they might have the potential of being bitter or regretful about how their life has turned out.  Granted, for the more traditional parental caregiver who's lived their own life and is taking on the role in the twilight of their own years, this attitude could logically be construed as being selfish, needy, and immature.  But in the guise of someone who, like me, is a nontraditional parental caregiver, these feelings have validity and merit.

     I regret being forced into this role so early in my life, before I had the chance to launch into my own life and do my own thing.  I desperately wish I had had the opportunity to transition smoothly from college to career, do the bar and club scene for a few years, sow my wild oats, eventually settle down and start my own family, and set up my own household before I had to begin the task of being responsible for my parents' well-being.  Unfortunately for me, I was forced to forego all of that because of what ended up happening at first with my late dad, then with my mom.  Even more unfortunately, while there are plenty of resources available for the traditional caregiver who would've had the opportunity to live their own lives first before taking on the role, there are precious few for caregivers such as myself, who are in considerably greater need of assistance and guidance.  I think even if we don't show outward signs of it, we're still filled with regret and bitterness about having been stuck in this role long before we were ready to take it on and before we got an opportunity to live our own lives.

     These thoughts fill my mind every now and then when I'm lying down in bed late at night and visited me last night, after typing out my last entry.  At first I thought about the "dear friend" of mine who inspired me to start up the blog and how wise he was to guide me in that direction, but then I thought of how close we are to having a full-fledged relationship and how difficult that's been for me because of my committments to my mother.  And I have to admit that I feel terrible that I need him more than he needs me because of what I mentioned in the previous paragraph; he's had the opportunity to live his own life, do his own thing, date around, and develop numerous relationships throughout his life; he, therefore, knows there are other people out there and that another relationship is possible for him.  I, on the other hand, only got the opportunity to get into one or two relationships before my caregiving duties made it impossible for me to seek out more, and I never had the opportunity to date around or live my own life; I don't know that there would be other people out there for me and fear that another relationship for me would be considered impossible.  These thoughts plague me, but I would never dare voice them to my mother because I don't want her to feel that she's responsible for my sad excuse of a "love life", even though she kinda is.

     Another thing that's difficult for me to process is any time there are media portrayals of young people living exciting lives, having relationships (or even relationship problems!), being engaged, planning out their weddings, and getting married.  Every time I see something like that and my mom is around, I have to either disengage completely from what I'm seeing or fight with all my might my need to cry bitter tears of disappointment and rage.  It gets even worse when it comes to portrayals of engagement and marriage, because that is something that I have the least confidence in ever happening to me and it's extremely difficult for me to feel happy for anyone who's getting to do this one thing that I just don't feel could ever possibly be in the cards for me.  Those feelings come close to being rage-filled when you're talking about people considerably younger than me who've been able to get married -- rage that they get to experience all that joy and happiness and have that whole day in honor of them when I have never been further away from that life goal and rage that I have to deal with the innumerable challenges of balancing work with parental caregiving while they don't have anything even remotely as challenging or difficult to deal with in their own lives (and no, the more typical stressors of career and maintaining a household aren't even in the same realm of difficulty).  When these thoughts swim around in my head, I can get really, really sad and mournful and wonder how it could be possible for a God to exist that would make life so unfair for me, or what the hell should be so fucking worth it for me in the future that I should be in this much of a need of being "punished" now.

     Because yeah, this sure as hell feels like punishment most days of my life.  Especially when I have to deal with my mother, who is so averse to taking certain medications that it negatively impacts her mood.  Her irritability means that even on those relatively rare occasions when I feel like being happy, dealing with her makes me unhappy.  The only time I have for myself most days is relegated to late at night, when I'm so tired and worn out that I don't derive much enjoyment out of anything.  It's so difficult for me to find the time to do anything for myself that all I have to fall back on is eating, and I'm so tired of being self-sacrificing in my role as caregiver that I can't be self-sacrificing elsewhere in my life.

     These are my realities.  Or, rather, my great big nightmare of a reality.  Back to non-venting in the next post.

Ins and Outs Stuff, Part One.

     There are a lot of things people don't know about the world of caregiving unless they're directly exposed to it, either by being involved in it or by maintaining a close relationship with someone who is directly involved.  For one thing, they don't know that if you're the primary caregiver, it's a 24/7 job, much like being the parent to a very young child.  For another, you're mostly dealing with someone who is very cognizant of everything, including their limitations (and how the person processes it is dependent on their own temperament).  You're frequently exposed to the inside of doctor's offices and are entirely too familiar with the libraries of information a doctor's office tends to require from its new patients.  If you're caregiving for someone with longterm or chronic ailments, you're going to have to keep tabs on lengthy lists of surgical procedures, hospital stays, and prescriptions, and you might find yourself carrying around a mountainous stack of business cards from various medical offices.  And if you live in an urban area with a large medical complex, you'll find that eventually, you know the interiors of virtually every single building located within that medical complex.

     I never agreed to sign on for this.  One never does.  One never bargains for the fate that awaits the caregiver; once you find yourself in that role, you tend to be stuck in it unless you're a heartless, cruel individual without any human compassion.  I got started via an indirect way -- by my father becoming terminally ill.  I was a commuter student going to a local university and living at home, so I found myself becoming involved in his caregiving, but I had help in the guise of my mother (who was still rather healthy at the time) and a cousin who had enough free time back then to assist us with my dad.  Though even with that outside help, my mother and I still found ourselves with a greater portion of our lives devoted to caregiving (I ended up having to postpone my education when my dad became more gravely ill) and we pretty much neglected ourselves as a result.  This led to my mother developing serious medical conditions that, by the time she could get around to paying attention to her own health again, were exceptionally severe.  Thus, by approximately two years after my father's passing, I found myself assigned to the role of sole parental caregiver, as I had no siblings to rely upon for assistance and my cousin was too busy with her own life to once again lend a helping hand.

     Everything started out slowly and gradually for me -- it pretty much always does.  At first the caregiver finds that they're assisting your "charge" with maybe one or two chronic or severe conditions.  My mother's primary concern was with trying to regain control of her diabetes, something she'd neglected completely for three years.  This included a brief hospital stay, which enabled me to learn a lot of hard lessons about how to manage things in those circumstances.  With each additional specialist who came into Mom's medical picture came additional tasks and responsibilities that were heaped upon me.  I can still recall the headache I developed when I was first assigned to do what I thought would be an impossible thing for me, what with my work schedule and all.  My mind swam with the thought that I would probably never be able to accomplish what the doctor wanted me to do.  But somehow I managed -- somehow one DOES manage.  I don't know how exactly one does, but eventually one either figures out a way to get things done or sacrifices parts of one's own schedule in exchange for doing those things.  Sometimes one has to do both in order to make everything happen, but in a way that doesn't ignore one's own health.  The most vital component a caregiver can bring to the equation is GOOD HEALTH and one will do anything and everything in order to maintain at least the facade of it.

     My medication list is considerable.  I laugh at the thought of someone decades older than me who would be overwhelmed at the thought of having to take three or four little pills every day.  I take approximately twenty medications a day, including nutritional supplements, in order for me to not have my health be a major issue for me.  I can afford maybe one day of inactivity as a direct result of illness.  I was recently forced to spend weeks trying to plan things out so that I could spend one week recuperating from a major operation that I'm still trying to recover from; it was just vitally important that I have that first week free and clear of any responsibilities or duties.  I spent a few days in the hospital a few years back and I have no idea how things got done back at home except to suspect that one of Mom's closest friends was at her beck and call while I was there.  I still had to drive myself to the hospital and relied on a taxi to drive me back home (the aforementioned cousin of mine drove my vehicle back home).  Oh yeah -- that's another thing.  I've been my household's sole driver for ten years and have had to drive myself to the ER, post-op appointments (while doubled over in pain), and I've even driven my mother around to run errands having only had a few hours' sleep the night before, weaving from lane to lane in a stupor as my mom, too weak and ill to notice, nodded in and out of semi-consciousness.  Simply put, I cannot afford to be in ill health and will pop whatever pills and do whatever it takes to make sure I don't ever feel the need to have to spend a day in bed, because that one day in bed means one day when no one gets fed, nobody gets dressed or ready for the day, and nothing gets done.  And there is not a single person I can contact in those emergency situations when I need time to rest and recuperate.

     More later.

Introduction.

     While chatting with a dear friend of mine, it's suddenly come to my attention that my voice is sorely in need of being raised.  One often hears of people in their twenties and thirties blogging about the life lessons they learn as they venture forth into the real world and trod their own path through self-discovery and toward domesticity and fully fledged adulthood.  One also often hears of people in their late forties and fifties blogging about the trials and travails they experience when they come to realize that the relationship with their parents has become reversed and they are now in charge of their parents and their well-being, whereas when they were younger, their parents were in charge of them and their well-being.  But you never really hear from people in their twenties and thirties who've had to forgo the usual and expected components of their lives in exchage for having to step into the role of being their parents' caregivers.

     I'm going to change that -- by chronicling what it's meant for me to be an assistant caregiver during my dad's final years on this plane of existence (in my early twenties), as well as being my mom's sole caregiver throughout my mid to late twenties and up to the present day (where I am in my early thirties).  From pure outward appearances, it may seem that we're all handling things completely perfectly.  My mom seems like a relatively healthy, spirited person, with her rosy red cheeks and generally good humored demeanor.  And I don't appear to be touched by much in the way of stress; it has often been remarked of me that I appear to be in my mid twenties, and I will spiff myself up and put on a smile when out in public.  But the public face often tends to lie, and those lies tend to be the largest ones one can possibly tell.

     The reality of our situations is such:  My mother is often in poor health, her face contorting as she hides her latest bout with chronic pain or illness or setback as she attempts -- but fails -- to become at least a tiny bit independent.  I am frequently so exhausted that I am familiar with the phenomenon of being too tired to fall asleep at night, and I can barely keep enough energy reserved in me to where I can derive pleasure from anything that does require the exertion of energy.  Moreover, every time I gaze upon my countenace when getting ready early in the morning, I can see a little more light extinguished from my eyes and a deeper set of creases throughout my face as I age at a phenomenal rate, much like when I was little and I found myself at the maturation level of a teenager, thus finding the exploits of my peers distasteful to say the least.  And maybe what I'm going through now is a punishment for those earlier days of precocious yet obnoxious maturity, or maybe it's God's way of telling me He (or She) believes I'm fit for canonization and I should rise to the occasion.  At any length, my mother and I often find ourselves donning masks for others but clawing them off viciously in the privacy of our own home or amongst a very chosen few who are welcome into our inner sanctum.

     This blog will probably not completely break down those barriers.  There will still be things I'll not chronicle out of respect for my mother's medical privacy or my own sanity.  But I do aim to at least give a flavor and sense of what it's been like to be my mother's caregiver at a ridiculously early age, as well as inform others about the ins and outs of life as a younger parental caregiver.  Because while one often gets that perspective from someone whose adolescence was filled with hippie aphorisms and the sounds of the Woodstock scene, I'm here to give it to you from someone who hails from the grunge-and-gangsta-rap generation.  Whether you like it or not.