Monday, December 29, 2014

Caregiving.....

My Mom is fairly low-maintenance as housebound elderly folk go.  She needs to be weighed daily, medicated twice daily and bathed weekly.  She fixes her own breakfast, finds her own snacks and comes over here for dinner.  I have to be vigilant about odd things:  Keeping wastebaskets emptied so she doesn't simply drop trash on the floor, keeping the cat boxes cleaned, and keeping the bathroom well-stocked with 'panties' and other supplies so she doesn't run out, forget she needs to wear them.  I do her laundry, order her medications, pay her bills, sort her pills and make sure her house gets cleaned. I do her grocery shopping for her and periodically make sure nothing in her fridge is going to kill her.  Add in the odd doctor's appointment and pacemaker check and you've got the whole package, more or less. 

And this is an easy-to-care-for old person.

I estimate that this takes me no less than three hours a week spent on her side of the house, and she spends at least half an hour a day on our side, frequently more.  We are blessed in that a good friend of hers comes and makes dinner with her on Friday evening, so she has 'company' and we have an evening to ourselves. 

When we have guests, they learn to deal with her dementia.  At first, everybody stops the conversation every time she interrupts to change the subject, or tries to bring her up to speed when she is six sentences behind.  After about half an hour pretty much even the politest person realizes that this is futile (although sometimes entertaining) and just glosses over the confusion as best as possible.  The problems is that she appears to love to hang out in crowds of people, so unless I point out that total strangers are going to see her in her nightie and she should get dressed (a sure-fire party-buster in HER mind LOL) she'll just hang out.  This wouldn't be SO bad, but she'll criticize other peoples' manners or my choice of guests. To their faces. 

Sigh.

I know it's easy compared to having to keep the house locked to keep her from running away, and shutting down the gas, and having to do more daily personal care and things like bedsore prevention.  But 'easy' and 'never-ending' don't seem to sit well in the same sentence, do they?

DeeDee

Friday, December 26, 2014

Post-Holiday Glow....

The house has cups and crumbs and candy wrappers in every corner, and I just found two gifts that I'm certain do not belong to anyone who lives here sitting in a corner of the dining room under an orphaned jacket.  The high chair trays need to be put back on the chairs which are already buried in the hopelessly jumbled Harry Potter cupboard in the living room behind the tree.  The dishwasher is on its third run and I'm afraid to check Mount Laundry.  The now-flat stockings hang a little forlorn from a mantle where the Baby Jesus is surrounded by cans, loose ornaments, and all and sundry objects that needed rapid rescue from the hands of toddlers.  Citygirl and her love are loading their car to head off to visit his family a few states away and I won't see them until June.  My Mom is a bit winded due to six pounds of extra fluid from all of the salty holiday overindulgence, and if there's a spot on my glass coffee table without a smear or a tiny handprint on it I can't see it.

But joy to the world!  If I were Bob Cratchit I'd be late for work too, for we made rather merry yesterday!  From the time Citygirl and Babygirl finally put on an appearance at 9:30 until the final board game ended near midnight craziness reigned.  Running children, roasting beef, a race to finish a game before the roast was done (under the influence of some excellent bourbon), the usual miscount of plates and chairs:  An awesome celebration.

Today's mess highlights the blessings of my life:  Two highchairs aren't enough.  Expanding my six-foot-long table to twelve feet doesn't give me enough room to seat everyone I love.  Despite having my seven-year-old grandson jump up and down to compact the recycling bin, we have too many gift boxes and wrappers to fit.  Our Christmas tree stand is tough enough to withstand three toddlers; and our elderly dog is, too (although he did growl once, out of desperation I think).  I found at least one gift for everyone on my list that touched their hearts, and was similarly touched. 

Every holiday has its own life and spirit. Looking at the blog posts from the past three Christmases I have to say that this one seems to have gentler, less crazed, less stressed wind-up and execution than the those, and certainly better than the one before that (when my migraine medications led to a cardiac admission two days before Christmas and cardiac catheterization two days afterward!).  If I've learned nothing else, I've learned that there is no stress in the aftermath of a good time.  The honest work of housekeeping is comforting.  And the memory of love and happiness is truly the most priceless of gifts.


 
Merry Christmas from Mayhem Manor!
 
DeeDee

Wednesday, December 24, 2014

The Holy Hush....

Christmas Eve morning, here already.  Sitting with my coffee, fighting the dog for space on the loveseat, typing by the light of the Christmas tree in a quiet, peaceful world.

Take a deep breath and enjoy it!  The joyous race begins in a few minutes:  Work, cooking, baking, feeding family, worship, HoHoHo until the wee hours and pray for  a few hours of sleep before Grandma decides it's time to wake everybody up!

Merry Christmas, friends.  May you have a share of peace on earth and goodwill toward all, remembering that in a holiday involving excited children 'peace' and 'quiet' are not at all the same thing.

DeeDee

Sunday, December 21, 2014

Yule......

I am one of those people who is sensitive to the lengthening and shortening of days.  From the end of September on, the decrease in light works on my heart and soul, dampening my spirits and hibernating my hope. People say that the holidays make them sad.  I think this is inherently untrue:  The sadness comes from the darkness. 

Darkness comes in many forms, of course.  The loss of natural light just allow the shadows that live within us to become more obvious, to take on the appearance of weight and form and substance that would be made ridiculous in the brighter light of spring.  The internal quiet that falls with the migration of the birds and the whisper of the snow shrouds and ensnares heavy thoughts that would dissipate like mist in a warmer sun. 

The tradition of burning a Yule log for twenty-four hours on this day makes perfect sense to me.  If we can keep the darkness at bay on the longest, darkest night of the year we will triumph over the cold and darkness of the coming winter, right?  Celebrating with light to fight the darkness is symbolic of everything that Christmas is. 

Starting today, the light is growing.  Hope is coming.  Emmanuel.

DeeDee

Thursday, December 18, 2014

Crazy Cat Lady.....

"You two need to stop making out in the kitchen."

Hubby and I frequently smootch in the kitchen.  It's one of the places we see each other the most: Prepping meals, unloading groceries, doing dishes, making tea.  Snagging a kiss is just a perk of a tiny prep space. 

Babygirl mused on.  "It's weird to think of two total strangers kissing each other." 

I pointed out that after more than thirteen years of marriage her dad and I can hardly be considered strangers, but she pointed out that we WERE total strangers once, and that at THAT point we must have thought about kissing each other and wasn't THAT weird?  My mom then observed that Babygirl herself would be doing something similar someday, and got this horrified reaction:

"Oh, NO I'm not!  I'm just going to be a crazy cat lady!"

Oh. My. Goodness.

My sides may still be aching tomorrow.

DeeDee

Wednesday, December 17, 2014

Social Issues.....

Last night I attended a meeting between our hospital administration, our local department of Social Services and several of the doctors like myself who serve the poor in our community.  The topic was medical exemption from work for people who appear to be able, perhaps, to, well, actually work.

It's a difficult topic.  We want people to work.  ALL of us want everybody who is capable of working to pull their own weight and get a job - not one sensible soul will argue with this.  So Social Services  gave us a general outline of how many people fall into the "We think they could work but they aren't" category. 

It was a surprisingly small number.

Social Services in this county has 900 people in and out of their doors DAILY.  The majority are pick up/drop off of papers and cards.  Up to four a day are homeless and seeking assistance.   The largest percentage of assistance is medical insurance, Medicaid, and SNAP (food stamps).  They assist in tapping into relief for heating bills (HEAP).  They help a small minority of mothers and children with cash assistance ('welfare'). They help newly disabled people until they can get hooked up to Social Security Disability.  And the smallest number are single adults who are out of work for whatever reason.  They require that these folks actually work in programs that serve the community and/or train them for work - unless a doctor says they can't.

Patients bring me papers all the time asking for work restrictions for Social Services.

So here's the thing:  How often do we, as doctors, simply give up/give in and just sign the paper to get the damned thing off the desk?  And some of the discussion last night centered around how qualified we are to determine, really, whether or not some can or cannot work, especially when their limitations fall outside of our 'scope of practice'?  Family practitioners are not psychiatrists, after all.

Well.

It was certainly food for thought.

I admit that I am less mindful than I should be about these forms, and I will be more vigilant, especially with people I don't know well or have some mental reservations about.  But...after nearly twenty-six years in this neighborhood if I can't spot someone who cannot work due to mental illness (the most recent one I signed off had been hospitalized with active suicide attempts three times in the past six months, typical of her last 5 years of life), then I need to retire.  Having an independent medical examiner tell me my patient needs counseling is a no-brainer.  Finding a place for a poor person to get that counseling is a bigger challenge. Getting a truly mentally ill patient to manage to keep those appointments - wow. 

Some of what I learned was good information, though.  If I suspect mild mental retardation, Social Services can have a patient tested for me if I request it, and although they can't arrange mental health services they can arrange comprehensive mental health evaluations, acquiring useful information for us to help us make better choices for the people and the communities we serve.

DeeDee

Tuesday, December 16, 2014

The Spirit of Christmas....

The Spirit of Christmas is often an elusive thing for us adults.  We get busy, and because WE don't have ten-day-long Christmas holidays we have to fit the extra cooking and shopping a decorating and wrapping and planning and partying into the already tight cracks and crevasses of our day-to-day business.  Fatigue and anxiety begin to chew at the edges of our cheer and strip us of our awareness of the greater purpose of Advent:  To prepare the way of the Lord.

But some people seem to embody the Spirit. 

There is a nurse in my office, one of my best friends; whose son, while physically healthy, has the type of academic challenges that have turned her into the kind of Mama bear that the middle school principal warns the high school principal is coming.  And while he will likely never be college material, he never fails to rise to the occasion when generosity is required.  When hubby and I inherited three kids at once, including our first little boy, Dom said to his mom, "They're gonna need boy toys, mom.  A boy needs Guys to play with!"  He sorted through his things and sent us a box of Spidermans, and Supermans, and other mysterious muscular be-weaponed creatures that I, as a mom of six girls, had no idea that boys "needed"  that made LittleMan feel more at home.

Each year, in our office, we keep our eyes open for a family who has fallen through the cracks at Christmastime.  A family with a recent job loss, or breakup, or some other unexpected problem that makes a hardship beyond what the usual Toys-For-Tots type charities can handle alone.  This year an offhand comment from a single mom about how charities give gifts to older teen boys and how her son only wanted one thing for Christmas and she just wouldn't be able to do it because dad was so far behind on child support was the trigger for me.  They are going to have a merry Christmas.

But the 'one thing' is a PSP, a $140 gadget by itself needing games to make it a useful present - a bit higher than what we usually look at.  But Dom?  His view was, "He only wants ONE THING, mom? Then we should get it for him!"  He's about Babygirl's age, so he went online to help her look for a deal and scored one for a hundred that had games included, and my friend (no slouch in the Christmas Spirit department) bought it.  Everybody else got the other things on the family list: The Easy Bake Oven (and the mixes to go with it) and clothes and pillows for mom.  And we have a carload of stocking stuffers, wrapping paper and tape, food and treats with some gift cards to a grocery store within walking distance of their house for anything we may have missed. 

Each day, as I look at that growing stack of generosity and kindness my heart is warmed and cheered by the love and caring spirits of my co-workers.  As individuals we complain and whine and crack wise and make mistakes, but as a group we ARE the Spirit of Christmas.  Thanks, Dom, for a little push from the outside (and thanks to his Mom, who clearly taught him well).

DeeDee

Thursday, December 11, 2014

Hopelessness.......

People ask me all the time how I handle what I handle.  Generally speaking, I have to say that I handle it well on the outside and badly on the inside.  This past few weeks have been pretty dark in my heart, and it's been hard to pull myself together to get anything done. I've been feeling disconnected, and I'm not caring for my home, my mom, my work, or my church in the way that I should. 

Recent readings have been helping me to reconnect.  Weavings magazine had an article recently on the topic of 'acedia' (yeah, me neither) which technically means 'laziness' but which implies something deeper, a sort of deliberate apathy.  The article explored our 'addiction to nothing' - our tendency to literally run away from work, family, and God into a desperate "parody of leisure":  Pointless web surfing, pleasure reading that brings no pleasure,  mindless video gaming, or as the author of the article admitted, "my new best friend, Sudoku" - whatever activity it is that keeps you from doing what you are meant to do and being who you are meant to be for 'just another couple of minutes'.   Ouch.  It kinda hurts when somebody nails a diagnosis to your soul, doesn't it?

I ran across a link to  blog post:  http://sojo.net/blogs/2014/12/10/gift-hopelessness.  Here is the post in its entirety:

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"But as a mountain erodes and crumbles and as a rock is moved from its place, as water wears away stones and torrents wash away the soil, so you destroy a person’s hope." — Job 1

This Advent I am grateful for the gift of hopelessness. Yes, you read that correctly. This past year has been full of heartbreak, suffering, and lament. It follows on the heels of nearly two years of unemployment, financial insecurity, and stress-related health issues. Any hope to which I once clung — any hope outside of God, that is — has been destroyed.
And for that I give thanks.
Anyone who has experienced any kind of suffering knows that it’s a rude awakening. Something breaks in, shattering to pieces every illusion that this life is somehow fair and leaves you feeling heartsick, like the proverb describes. The tree that you thought would give life and shade and fruit and beauty turned out to be a useless stump.
And it’s only a matter of time before something else falls apart. It would seem that it would be better to never hope, rather than to be disappointed again and again.
This summer, as I waited anxiously to hear what was strangely afflicting my father (who had already had several health scares and a heart attack), as I nursed a broken heart and came to grips with personal disappointment, as I watched how a once rosy-outlook turned to a heavy-grey, I learned the true meaning of hope. Everything in this world will break or decay or simply fade away. Nothing here is permanent and even the most seemingly perfect and ideal situation has at least a hairline crack.
Yet the One who Paul refers to as “the God of hope” met me in that hopelessness. Seeing God, who is perfect in holiness, perfect in faithfulness, and perfect in love, juxtaposed with all my other hopes — even the good ones, like having healthy parents — made them look flimsy and dull. As Isaiah wrote thousands of years ago, all of creation withers and fades, yet God’s word endures forever. God’s plans and purposes are not subject to decay. God’s love never fails.
It’s that God of hope that we must long for — and who alone can satisfy our longings. It’s that One who can fill us with “all joy and peace,” as we trust in God. It’s that God who can cause us to “overflow with hope by the power of the Holy Spirit.”
Each year at Advent we sing about the “thrill of hope” that comes with Christ’s birth. My weary world rejoices as I consider that God has not abandoned me to the hopelessness that comes with this fallen creation, but came down to live in the midst of the fragility and flimsiness of my hopes, to be with me as they shattered or simply faded away. This hope anchors me even when life falls apart. This Advent, may you know this God of hope.
Juliet Vedral is Press Secretary for Sojourners."

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And there it is, said so much better than I could ever say it.  Sometimes it is the stripping away of all we knew and held dear that finally opens our eyes to The Reality underpinning it all.  "The grass withers, the flower fades, but the word of the Lord endures forever."  Eternity lives in each and every human soul, but our human bodies will suffer and die.  Accepting the discord between those realities is challenging, especially when the suffering belongs to a beloved child.  Finding reasons to stay connected and not run away into empty 'acedia' is my challenge. 

Challenge accepted.

DeeDee

Sunday, December 7, 2014

Wrapping It Up....

I spent all of yesterday afternoon wrapping packages.  It is, admittedly, my least favorite holiday task.  This year was no different:  Wrapping paper - check.   Tags - check. Gifts - check. Tape - um, not so much, which is frustrating considering I can clearly remember buying a three-pack as I shopped, but there are about two dozen bags of unwrapped loot upstairs in my mom's apartment all conspiring to participate in assisting the tape in a winning round of hide-and-seek.  But hey, Mom has tape (not that SHE can recall where she keeps it but I unpacked it and put it away when she moved here so I know where it is) and that roll keeps me going until I finally get to bag number twenty-two and find MY tape.

Two hospitalizations in November with three unexpected trips to Philadelphia put a bit of dent in the Christmas budget, along with factoring in the cost of the Cephaly (the anti-migraine nerve stimulator, not covered by insurance), which will be over $300 and will come out of next weeks' paycheck. I've been shopping very carefully, but it's a long list of people. 

Every year since Babygirl became ill I've run up against that same basic issues - giving and loving are not the same.  Dollar amounts and love amounts do not have anything to do with one another.  Creativity matters to an exceptional degree.  Kindness matters.  Thoughtfulness matters.  Love matters.

And when I consider finances I have to consider how blessed we truly are.  Throughout all of this we have never been late on a mortgage payment (don't ask our electric and cable people what they think of us).  We have not had to tap into our retirement funds (although we had to drop our contributions substantially for a time).  We have not been hungry.  We've been able to care for my mom.  We've been able to rebuild a (small) emergency cushion and I've kept my hands out of that, although I might mentally be able to justify treating the cost of the Cephaly as an emergency expense. 

It comes down to remembering why we are here, and why we do what we do.  Every year I have to  smack myself and remind myself that we give gifts to remind ourselves of the wise men who traveled for months searching for the new and living King.  Through the beauty and blessing of this season it is all too easy to forget the purpose behind what we do.

So today we are going to get our Christmas tree.  The usual arguments will reign about fat versus skinny, tall versus short, and we will come home with an obese tree that scrapes the ceiling and spend the day making beauty in honor of the coming of the Baby. 

It's not the number of gifts, or their price tags.  We can't rival the value of the Original Gift:  We can only honor it.

DeeDee

Wednesday, December 3, 2014

Lessons in Learning.....

One of the many, many challenges of raising a chronically ill child is the colossal task of getting that child educated.  There are several phases to this challenge.

First, your child must be ill enough to actually qualify for assistance.  On the face of it, this seems just silly, but there has to be a standard of some sort, right?  And how hard can it be?  In some cases it's perfectly simple.  Your kid has a medical catastrophe like cancer, has surgery, chemo and all of that.  There's a defined 'start' and certain (no doubt completely irrelevant) societal expectations about timelines and so on.  OBVIOUSLY he needs home teaching.  In other cases, your kid gets a belly ache.  It gets better, it comes back, you see a specialist and then another and finally two years later you find out it's Crohn's disease and your kid has missed two days out of every five and is flunking everything and NOW what? 

The next phase is making sure your kid is well enough to handle being taught.  With an intermittent illness this is a horrible, horrible daily challenge.

Once you've identified that your kid needs and qualifies for help, you have to figure out how to make this happen.  You'd think there would be someone at the school who would be in charge of this.  So far as I can tell, waiting for help to come from the school district is about as fruitful as waiting for your letter to arrive from Hogwarts.  It's not coming.  Get over it and move on.

So, in the midst of holding down your job, caring for your family and managing your chronically ill child's medical needs, you need to be on the phone to the school to get the home teaching set up.  Oh, and by the way, those teachers seem to be disappointed if you don't know where the textbooks are, what the current homework is, and how to log onto the teacher's website.  In other words, you are supposed to prepare everything they need to do THEIR job, while you are doing YOUR job. 

Babygirl was approved for full-time home teaching a week before the Thanksgiving holidays.  We will be starting tomorrow.  She is supposed to get two hours of daily tutoring, but is scheduled for only four days.  And why, I say WHY, are they tutoring gym class?  Since they aren't tutoring her non-core classes and she needs the credit from her electives, what happens with those?  Ugh.  Back on the phone I go.

As far as the headaches go?  Babygirl did very well for a week after she came home from the hospital.  She had her first headache on Sunday, took her new rescue medications and did fairly well with them.  She went to school on Monday (which of course surprised everyone since she's supposed to be at home), came home to home teaching for two hours (her teacher had never seen her headache-free and was astonished at the difference), did two more hours of homework and went to bed.  Yesterday she was laid out with a headache but could have managed home teaching if they had TOLD us even on Monday that they had a schedule set up. 

So. Hopefully going forward we are set.  Unless she is well enough to start going back to school.  Then we are screwed because she's miles behind and they likely won't maintain the extra teaching if she's attending regularly.  Yeah, phase four - recovery.

DeeDee