Sunday, February 20, 2011

Filling the last days

FILLING THE LAST DAYS

How do you spend your last days?  I spend mine:

(1)    WRITING LETTERS:  I spend mine writing letters to my baby son, who is hardly a baby anymore since he’s 19, but he’s my baby nonetheless.  I want to write letters for each special occasion in his life like marriage and children, his first Christmas without me, his birthdays, getting along with his siblings, helping but not being a co-dependent for his brother, understanding his sister’s bi-polar days, and helping his step-father with the grandbaby.  I also want to advise him on picking love rather than letting it pick him, marriage vs. divorce, dating safely, not letting himself be taken advantage of, religion, saving money, and more.  So many letters, so little time.
(2)   TRYING TO FIND CHILD CARE:  I have spent hours upon hours trying to find and organize reliable child care for my two-year-old grandson.  My husband works part-time evenings and is gone from about 2PM to 1AM including travel time, on the days he works.  Most day care centers are not open after 6PM.  I do not want him staying with a stranger who may abuse him when my husband is away at work.  Most of our reliable family members live out of state, while those nearby are so unreliable.  My husband’s family has CPS problems with their children, and his mother’s health is nearly a spoor as mine.  My family lives too far away which is why I ended up caring for my father with dementia and my mother while she was dying.  I have another blog written while my mother was dying if you are interested: http://mamasdying.livejournal.com/.  I worry constantly about what will become of the baby, and who will end up taking care of him.
(3)   TRYING TO REST:  My husband is so depressed over this that his listening abilities are nearly gone.  He doesn’t mean to do it, but he totally tunes me out.  I find that many family members are doing this.  They don’t want to talk about me dying, and that’s understandable.  It’s also one of the reasons why I chose a blog and talking to strangers rather than them.  I need rest.  I am so tired all the time.  But so are my husband and everyone around me, just from the depression.  We are all having a hard time functioning with any energy at all.  I want to sleep all day long, never leaving the bed.  But the noise drags me out of bed – the sound of my grandson laughing loud, squealing as Papa gets him, banging on my bedroom door to get in so I can save him from Papa’s tickling.  I need to leave the bed, so I do.  I need to stay in it and rest but I don’t want to waste too much precious time.
(4)   PREPARING FOR APPOINTMENTS:  Every doctor appointment and procedure is a time waster.  Many appointments leave me sitting for more than an hour or two in the waiting room.  That is just unacceptable, but I have no choice.  So I prepare as best I can.  I take printouts showing all the doctors, their addresses and phones, the procedures and dates, where the films and tests results are located, etc.  At first I carried it all conveniently on a flash drive.  But not one doctor would download the information from it, which is understandable (who wants a virus), so I carry it all hard copy.  I print it out, and then I fill it all out a second time on their paperwork, and give them the bundle.  It’s such a waste of my precious time.
(5)   BUDGETING TO THE EXTREME:  A co-pay here, a co-pay there (as many as ten one month), 20% of the hospital, 20% of the tests and procedures, and an extra Cobra payment paid ahead because the insurance is trying so hard to kick us off.  They are like vultures waiting for a missed payment.  Therefore I send everything to them certified, return receipt.  One month of co-pays alone were $200 for ten different visits, plus my procedure and tests deductibles, which thankfully are billed so we can let those go to collection.  Then I budget for the car payment, diapers, gas, child care for when I have procedures that overlap Papa’s work days, and more.  It’s been pretty miraculous so far.  Each time I was stressing over the car payment, money came in just in time to cover it.  *fingers crossed*  Let’s hope that continues.  My next biggest worries are transportation, motel and meal expenses for the trips to UCLA.  There will be about four trips total, with a two to three week stay for the surgery and recovery.  We had a small income tax refund which will cover a tiny portion, and are praying for the rest.  But there is a little good news.  We are finally off unemployment after 20 months.  It was due to run out May 2011.  We’ve been scrambling and desperately looking for work for the past 18 months.  My husband’s new part-time job, so far, has given us the equivalent or just a little less than unemployment since he started just three weeks.  My last job was customer service via phone, which is no longer an option for me, neither is working outside the home or at anything that requires regular attendance or attention.  My medications prevent good attention and attendance, and my overall lack of energy and depression prevent almost everything else.  I even considered selling Avon, but then realized I would not be reliable for delivery and returns, and eventually it might get pushed onto my husband and then just dropped.  The economy on top of cancer is a real killer.
(6)   TRYING TO MAKE CONNECTIONS:  I spend time trying to make connections with strangers, online, who will help me fill some of my loneliest time.  When my husband is gone at work, the baby is sleeping, and I am alone with my thoughts – my insignificant life and little bit of time left overwhelms me.  But what I find mostly is the usual people online who use connections to belittle, smear, obnoxiously joke, and generally offer nothing of essence.  So, I’ve reached out for distant friend connections, those who I know, but not with close family or friend connections.  Maybe that will fill this void.
(7)   LOOKING FOR THE CHEAPEST CREMATION:  I’ve been shopping for my own cremation.  I want it to be the absolute cheapest available.  I found one for $400 that seems to include what I need which is just transport of the body, cremation, cardboard box urn.  I’ll be paying for it in advance, so I have to wonder if they are legit, or whether they will scam my grieving husband into a deeper financial commitment when he will not be able to afford it.  I always thought planning your own funeral was the way to go, but it sucks.  It especially sucks when you are the family person who organizes and preps all family loss, and no that no one you leave behind can handle that.  Plus it has to be really, really cheap.  No flowers, no music, no services, no memory get together, no nothing except a cardboard box of ashes and two death certificates.  Just thinking of this sucks so much I just need to move on to the next item.
(8)   HOUSEHOLD DUTIES:  Yes, believe it or not, I still need to do laundry, dishes, vacuum, shop for groceries, keep up maintenance on the vehicles, make doctor appointments, organize a household schedule, blah, blah, blah.  When my husband works, I spend the day taking care of the baby, changing diapers, doing laundry and preparing meals.  When my husband is home, the day work is the same, except we add errands to the list and shop for groceries, diapers, etc.  Each meal time is a challenge.  I make every one else a regular meal and then decide between cottage cheese, jello, pudding, and instant breakfast mix for myself.  Once in a while, if we are lucky, a friend gives us a meal gift card and we go to Red Lobster or Applebees and I have some delicious potatoes and gravy, or lobster dipped in butter, and ice cream.  Anything soft to swallow.  Going out to dinner makes things nicer for a night.  I don’t have to cook, or dig through our meager shelves, and I get to have something fairly delicious and eat slow and enjoy the ambience.  This is one of my few relaxing treats.
(9)   CRYING:  I really try hard to avoid too much crying.  What do I have to feel sorry about?  Why feel sorry for myself?  That all seems too selfish.  Mostly it seems too wasteful.  Crying time can be used to write letters to my son and do the mundane things that need done.

I didn’t think I would be spending my last days doing things that are so mediocre, but we get the hand we are dealt.  And the only thing we really want is more time – more time to do the mediocre mundane things in life.  My biggest worry right now is not the 2-4 months I have left to live, but whether the surgery I may have in two weeks will kill me.  If I take the option for surgery, being so high risk with such a large tumor, I could shorten my so little time left to less than a month.  But should the surgery work, I could lengthen my time to a year, maybe a little more.  It’s a crap shoot.  I’d be very willing to take a couple more years of just mediocre mundane rather than the stress of a few weeks left.

1 comment:

  1. Hi,

    I didn't know much about esophageal cancer so I read about it. I found the list of risk factors.
    risk factors include:

    •Alcohol use
    •Male gender
    •Obesity
    •Poor nutrition
    •Smoking

    I'm not going to make judgements but I assume you had at least one of them - poor nutrition (since you were obese and looking at your food choices...). So... if what you used to eat contributed to your condition now, why not try to radically change your diet? It might add time to your life, or at least give you more energy in the time you have left. From your other post - "I make every one else a regular meal and then decide between cottage cheese, jello, pudding, and instant breakfast mix for myself." Is this you giving your body the best nutrition possible? I think your priority should be buying fresh, healthy food for yourself.
    You should buy and read (or may be the library has it?) the book called 80/10/10 diet. It is an eye opener for most people. It's not a short term "diet" it's a lifestyle people should live in order to have the best health possible.

    The book goes into great detail which you shouldn't miss out on. But i will give you the gist of it - Everything besides raw fresh fruits and vegetables is detremental to your health. This info is not new, it has been around for a long time. The author of the book just put it into simple terms so more people can understant it.
    Anyway, eating should consist of mostly fruit, daily greens (spinach, celery, lettuce...) and some (very little) nuts or fatty fruit like avocado. Most of the calories should come from fruit. It's the food our digestive system is designed for. People have cured multiple diseases with this way of eating.
    It doesn't have to be expensive. You can get overly ripe bananas for a cheap price. You can get frozen fruit to make smoothies with. You said that you can only eat soft food, well this is perfect for you then! You can make smoothies and drink them all day. You don't have to be hungry or live on poor nutrition (jello?? c'mon!) So.... I really hope you will read the 801010 book. You can also check out the forum where we (801010 followers) can ask questions and talk to the author. He is great at supporting and answering questions.
    http://www.vegsource.com/talk/raw/

    Best of all to you. I hope you will give your body the best nutrition so it can give you want you want - life.

    ReplyDelete