Hoping for Hospice

A number of years ago, I realized a passion and strengths that would be best utilized in providing hospice care for terminally ill persons.  I should rephrase that – coordinating or administrating care, not providing hands-on.  In that, I do not in any way mean as professional medical staff.  Ever seen me apply a bandage?  If you need immediate medical attention, skip me on the Speed Dial.  I would be as likely to obtain a nursing degree as to master rocket science – probably not happening.

When a job in administration at a funeral home came up on my radar, I thought it might have enough similarities to satisfy that yearning.  After a year and a half of bucking policy, process and protocol; I decided to step away and find a role in preserving lives; not preparing them FOR long-term preservation in one manner or another.

The cemetery and funeral home experience did however provide the opportunity to overcome any discomfort with dead people.  I dealt with more dead people than live ones in that job, and frankly preferred the dead ones.  They tend to complain less frequently and are very good listeners.  Quite appreciative of any small thing you do for them.  Leaving the music on overnight in the viewing room set to the oldies station was one they really preferred.

I will be the first to admit, it is thought of as kind of weird to want to provide care and services for patients and families at end of life.  But this is MY vision of what hospice could be.  When a family has a baby there is a service called a doula that helps care for the mother and the family as a whole during the transition from pregnancy, through labor and delivery into early parenthood.  And we all remember how overwhelming and daunting that journey was or can be.

The vision I have for hospice care is that level of care of all the minutiae of life surrounding the family so that they can focus on the care and alleviating the pain and attending symptoms of the terminal patient.  Tasks that take away from time with the patient and deplete caregiver energy, such as providing meals, house cleaning, taking care of laundry, child care, pet care, errands, banking, prescription pick-ups, personal assistance with daily living skills and yard care would be assumed by others either on a volunteer or pro bono basis - with donated professional skills.  It's my daydream; it's feasible.

Within our church family, when members have had ongoing medical issues or terminal illnesses, we would form a cadre of people to attend to different task strengths.  One man didn’t have the daily strength or coordination to shave, but took comfort from receiving kisses and caresses from his spouse and family members; so someone came to shave him twice a week.   A woman enduring chemotherapy for breast cancer couldn’t stand to be in the kitchen and cook meals due to waning energy level and nausea around food; we found someone who habitually overcooked for her family and often had leftovers to share.  A family who was finding their yard work getting out of hand from frequent hospital visits arrived home to find a crew of 3 mowing, edging and weeding their yard on a clear weekend. 

Medicare covers medically necessary skilled care for hospice or end of life care.  As part of licensing and operating regulations 5% of those services need to be volunteer based.  My long-term dream is to assist private insurance and medicare to validate that the continuum of care should encompass all aspects of life and enlist a cooperative effort to not only support the terminal patient, but also the caregiver to prevent caregiver burnout and maintain a high level of functionality when not overwhelmed by letting the daily tasks pile up to a point where there is no getting ahead.  

Providing services on a rotating basis to augment the time that a family has help with managing palliative care and treating symptoms to aid in the transition from life to death is a noble passion.  There is a trend in home health, hospice and long term care to promote aging in place, keeping someone in their own home for as long as it is safe and prudent to do so.  Enabling them and their caregivers to take responsibility for their medical treatment, be educated on how to stay safe and healthy and empowered to take steps to do so.   This trend needs to extend to caregivers and palliative/end-of-life/hospice care as well. 

In a perfect world, I would have at my disposal a list of volunteer and paid resources for each and every request, need and desire.  Therapeutic massage, dog groomer, mobile chef, landscape maintenance, housekeeping, car maintenance, reiki worker, home manicure/pedicure provider, hair stylist, someone to clean out closets after a death occurs and coordinate delivering donations, funeral home arrangements, celebration of life resources, handy man, musician for every taste and mood, as well as a magician just in case a kid’s birthday party has to happen in the midst of a terminal illness.  Life tends to continue to happen, even as death encroaches.

And once we get this down to a science and can adequately meet each and every need to the best of our ability for each and every one of our clients/patients and residents, I will feel truly and completely adept, useful and blessed to have created one hell of a legacy.  Then I will need to find someone who can maintain it while I reap my reward of most likely utilizing said services to support myself or a member of my family in the process.  

Long story short, I want to make sure the service is cultivated and supported to work the way I want it to work long before I or my loved ones need it and then carbon-copy the program in multiple areas so that others have the same option.  THAT is the way hospice/end of life and palliative care works in my perfect world.  Let’s make it so and boldly mold hospice to the needs and treatment of the whole in way that is not served at the moment.   

It may not be possible to encompass my whole vision as I'm realizing the more I research due to liability issues and legalities, an unfortunate side effect of a litigious society that impedes the best intentions.  But that is a whole nother story, and not one I'm eager to explore.

The WHY Chromosome

For the last 20 years, I have lived with 1-3 men, and a male dog, at different times.  The pros to that arrangement are: There is always someone to call to kill enormous bugs and spiders, open a jar or reach something above my vertical range.  Consequently, there are a vast amount of negatives that have led me to develop the theory that the Y chromosome should be renamed the WHY chromosome.

Why am I the only person to see an empty toilet paper roll and replace it?  And further more, why is there a shoe box full of empty toilet paper rolls in your closet?  And more under the bathroom cabinet?  Are you saving them to make British cracker toys?  Did you want to know how much toilet paper you used in a given month?  Did you even know the box was in the closet?

Why do you not see a ring in the tub, toilet or sink or the dotty path of toothpaste film on the mirror and take the 30-60 seconds to eradicate it with a paper towel, the special tools of bathroom cleaning magic, a Magic Eraser, or your wet bath towel that will predictably end up on the floor?

Why do you feel it is necessary to create a Leaning Tower of Plates in both sinks in our kitchen?  If anyone turns on the water, a cascade will roll back to the window ledge I cannot reach without Cirque du Soleil-esque contortions, and the assistance of a chiropractor to restore me to vertical.

Why, when I actually have cash in my wallet, do you suddenly remember that an event requiring exact change is happening at school that day, thereby reducing my currency to receipts, used gum wrappers and lint.

Why, when you have a perfectly good dresser set and closet full of hangers, are all of your clothes to be found on the floor in various stages of clean, dirty and “ok to wear one more day with a shot of Fabreze”?

Why can there be piles of recycling, the trash overflowing, mail to be sorted, grocery bags to be put away and when I call you to the kitchen, the first word I get is “What?” or “What’s for dinner?”

Why when I ask you to wear something nice for dinner with the grandparents, do you insist on a favorite politically incorrect or obscure t-shirt that will require explanation.  That shirt would look perfect layered under a button-down dress shirt, don’t you think?

Why do your dress shoes, suits, dress slacks and shirts always shrink between holiday wearings?  And why are you always a size that is most difficult to impossible to locate at local department stores?

Why is it that I keep finding my laundry in your clean clothing piles that are never put away?  Because my laundry basket is empty and open for storage… duh!  I have been looking for that shirt for at least two months!

Why is it that I’m feeding, watering and cleaning up after YOUR pets?  Did I clamor and beg for said pets and vow repeatedly to be fully responsible for their welfare?  I think not...

Why is it that you think I have auto-radar for anything you can’t find in 10 seconds or less that is usually right under your nose?   And devising a logical place for it to be returned to after use, only works if that logical place is utilized...

Why is it that God thought it would be riotously funny to bless my life with two sons within 28 months and then sat back to watch the chaos unfold?  There are many times in the last 20 years that I have been convinced that my life was God’s favorite sit-com.   But you know what IS fair?  My sister is now waiting to see what flavor the bun in her oven will be and if it’s another boy, I’m going to laugh and laugh and laugh until the tears run down my leg.  Because that’s what happens when you’ve raised boys as many of us are keenly aware.  But that's a whole 'nother story.

Full vs Fulfillment

'Food fills you, but it is not intended to fulfill you.’  It was a challenge this week to find ten activities, or things that fulfill me, instead of using food to fill the void.  It was harder than one would think.  There are the obvious ones – hanging out with friends, going for a walk, engaging in exercise, but I managed to find some really obscure ones.  It had to be something low or no cost, so while a trip to Tahiti, massage and spa getaway would fit the bill, would it give you lasting enjoyment after the activity was completed?  And, yes, I did put THAT activity on my list, too.  Sometimes it does.  Just sayin’.

Blowing bubbles, riding on a swing, petting a dog, waving at small children, making a phone call to catch up with a pal instead of a text, reading an intriguing book, coloring with crayons, cleaning out a drawer or cabinet, engaging in crafts, window shopping (which never stops at the window in my life, so needed to be eliminated), spending time at the beach, flying a kite, molding with clay, bead work, decorative painting or wandering through a farmer’s market.  You notice the things not on this list – house cleaning, toilet scrubbing, mowing the lawn, laundry.  And we wonder why after the flurry of necessary activities we have the urge to fill the void/reward ourselves with a less than healthy snack choice.

Refilling the vessel has been a common theme with church women’s groups over the years.  We do so much for others and keep no reserve so that when more is expected we just keep pouring out.  To the point of burning out, requiring anxiety and antidepressants to maintain the equilibrium required to maintain the pace.  When given the opportunity to unwind, rest, rejuvenate and do something strictly for our own enjoyment, it can take half the time available just to determine what that might BE! And 9 times out of 10 it turns out to be a task on our ever growing list.

It should come as no surprise that the feeling of guilt when indulging in this way is universal.  Women from 30-80 echo the same feelings of “should’s, ought’s and need to’s” that we all carry as unnecessary baggage.  Is it any wonder that many of us quiet these feelings and the accompanying feelings of inadequacy with comfort foods?  I’m sorry a carrot just doesn’t give the same vibe as a box of Oreos and a glass of milk, but I digress.  We all know that we need to eat better and exercise, but that is the first thing to go off the schedule when the path goes awry.  Self-care needs to be our first order of business, not the last resort when we’re at wits end – see “secure your own oxygen mask before assisting others…”

Once we’re past 80, the filters come off and if something’s going to kill me I’m going to enjoy all the pleasures of life getting there.  Finding fulfillment in our lives without relying on unhealthy habits is a real challenge. Remembering the things that truly make our souls sing and keeping them top of mind to reach for when we are longing for fulfillment is a much more enriching exercise than wallowing in guilt or tight pants.  Raising a carrot or an apple to our improved physical and mental health.

My Cup Runneth Over

Boobs...Tatas...Sweater Shapers...Mammaries...Jugs...Bikini Boosters, whatever you call them, enough is enough and too much is just that, two too much.  Spending all of my teen years in the B-C range, I longed for more.  The saying "be careful what you wish for" was never more true.  Whereas before, I could wear any style shirt, play volleyball, softball and occasionally run if the situation warranted.  NOT anymore.  Though now I'd only be tempted to run after an ice cream truck or away from a rampaging carnivore, but that is a whole ‘nother story.

Before kids and with Rx help to prevent such, my mammary glands jumped rapidly into the D range.  Surpassed it into the mid-alphabet L-M with both boys and settled into the F-G range in my later years.  Petite pretty bras were no longer even a possibility in my life.  Fully functional artillery carriers with enough wire to cage the beasts and set off airline metal detectors around the globe.  While shopping for an F/G cup bikini in Australia, I was greeted with a choice of exactly 2 styles and a hefty price tag as well.

The negatives – Undue attention focused on Bert and Ernie (we’re quite attached, I had to name them), the inability to reach things behind items that are invariably another 2-3 inches away without dislocating a shoulder socket.  Needing to buy dresses two sizes too big for the rest of me to fit the man cannons.  It does give me an excuse to eschew running or jogging as the ensuing two days of pain is not worth it.  And sleeping on my stomach went away after kid #2.  I have to wear patterned blouses to camouflage food drippings that tend to land right in the mid-chest mountain range.

The positives – I get prompt, courteous service at any meat market, auto parts store, hardware retailer or tire center.  Countless times I have found a stray earring in my cleavage I had thought was lost forever.  Our cat had a convenient perch when we watched Downton Abbey together.  I’ve been known to tuck keys, a bottle of beer/ketchup/mustard, cell phone etc. into my cleavage when hands run short for carrying.  I’ve long said you should grow an extra arm with each child – the next best thing is utilizing said cleavage to augment.

For all of their annoyances, I’m glad they served their purpose in nourishing two infants.  So far, they’ve not proven to be cancerous time bombs and have behaved themselves in mammograms. Gym classes, not so much.  Sports bras encourage their migration into a monoboob and they revolt against swimsuit bra liners, making them all but pointless.  Having to ask for alternative maneuvers in yoga was a slightly unnerving moment, but so glad I learned options to avoid launching one against my chin.

A visit to a plastic surgeon to see what reducing options might be available led him to agree that I was a good candidate, but my insurance at the time rejected that idea unless it was for reconstruction after removal for breast cancer. The black sharpie marks showing where my scarring would occur were quite shocking in the light of day and I decided there were many more things I’d like to spend $12K on than smaller boobs.

So while my cup runneth over, the plan is to keep them and manage as best we can.  Although the lower they sag as time marches on, the more I’m reminded of a joke.  What did one boob say to the other boob?  "If we sag any lower, people are going to think we are a couple of nuts!”

Travels with Mom

Family vacation season is fast approaching and I have a lengthening list of all the incidentals that I will need to pack that no one else in my family will think of - until it is a vital necessity.  Tweezers, nail clippers, band aids, sunscreen, insect bite cream, cotton swabs, safety pins, toothpaste, hair gel… etc.  The weirdest request. -  “Mom, do we have any rice?” became a classic after youngest son failed to remove his phone from shorts pocket, before cannon-balling into pool.  Realized his error the moment he hit the water of course.  Phone did survive the baptism after spending time in a bag of uncooked rice.

On our first trip with three generations - me, mom, grandma - traveling to South Dakota when I was 5.  First, the ONLY hijacking in SeaTac airport history delayed our flight for hours.  This was back in the mid-1970s, prior to heightened security measures.  My so articulate 5 year old level of “Stupid hijackers, go away. Who wants to go to Cuba anyway?” didn’t work.  Then when our baggage was changing planes one of the suitcases fell off the trolley and opened on the tarmac.  Nothing like seeing your mother’s unmentionables strewn from hell to breakfast.  A memorable trip on so many levels.

Traveling with mom is much like traveling with a 5 year old, turnabout is fair play.  A woman prone to sensible shoes, hers usually tie and and between managing jewelry that tripped the alarm, an unwieldy handbag and too much to carry – she now has a metal plate in her wrist. All kinds of circus acts are happening when she goes through the gate.  So there we are before and after the security check with me on the floor untying and retying her shoes, while she rearranges her baggage.

Mom also tends to get distracted by rude people, other people’s issues, most shiny objects and technology snafus.  On our last trip to see grandson #1 at college, we were managing an acoustic guitar case, 4 suitcases, 2 backpacks and 3 people.  I had to send grandson #2 to retrieve things more often than he was comfortable to keep all of our assorted accoutrements together. We only lost mom once in the process.  We determined next time we’re going to put a helium balloon on her coat zipper to use as a locating device.  Her diminutive stature makes it hard to see her in a crowd.

Once we left the airport, trying to navigate CA hwy system with mom reading road and street signs and son using phone GPS… which is more effective?  We arrived at our hotel – booked through AOL dial up on the internet only to realize it was on the flight path of the community airport for the rich and famous coming in and out of Monterey and Carmel.  Small private Cessna and Beechcraft jets started buzzing at 6am daily and lingered past 10pm.  We were treated to a front row seat, and had to cross a freeway off-ramp to turn into our hotel.  Mom takes me to only the best places.  

This reminds me of another trip with mom to a family reunion in South Dakota.  She was coordinating all the specifications for a family reunion.  We travel as a group of 8 people all day from Seattle to Utah to South Dakota and arrive at 10pm in a remote area to discover our reservation starts TOMORROW night.  Somewhere the arrival dates were changed on the flight but not on the resort.  I was about ready to start pounding on doors to rent someone’s bathtub for the night.  Exhausted and at the end of my tolerance level – I dissolved into hysterics and tears.  A room was found – not a tactic I recommend, but in the right application, useful.

Then there was the next family reunion five years later in Colorado - equally memorable.  I was flying separately meeting my parents in Colorado.  As our plane landed, alarms were sounding and we parked on the tarmac for an hour until we received weather clearance to proceed to the terminal due to “thunderstorms.”  The elderly farmer in the seat next to me peered out the window and proclaimed with experienced certainty, “Thunderstorms, hell.  Them’s tornado clouds!”  

Urge to bail activated and NO cocktail service!  When we finally deplaned, it was news on all the weather channels that THREE tornado funnels had touched down within a mile of the runway.   My folks were watching them touch down from the cell phone waiting lot and sweating bullets.  Our next stop upon leaving the airport was a bar for a well-deserved libation to calm our frazzled nerves.

Within the last month, we travelled to Puyallup with mom for our annual staycation for Mother’s Day weekend where we take time to connect, relax, regroup and rejuvenate away from the demands of home.  My sister booked a hotel, we picked mom up at home and each of us packed a corkscrew to open our one bottle of wine – something we’d overlooked in the past.  No harm, no foul, no tornadoes, no highjackers and just a few hungover hillbillies for entertainment purposes.  It has taken a few learning opportunities to convince us to take over the planning and reservation making roles and let mom choose the wine and restaurants.  We all travel much easier that way, but it makes for good anecdotal evidence to be turned into a whole nother story.