This Distance Caregiver Thing

I may not be cut out to be a personal caregiver.  After 3 decades of working as a healthcare professional and caring for a thousand or more adults over my career, you would think that this would come easy for me.  It is not.

It’s one thing to work with up to twenty different personalities in a single day for 30 to 60 minutes at a time, trying to facilitate a therapeutic experience that is meaningful for the person and billable to his or her insurance company.  I learned to quickly develop a rapport with each individual, turn our focus to the therapy evaluation and treatment process, and wrap it all up with a plan for the next session or discharge.  Often the most challenging patients were put on my schedule because of my experience working in mental health settings and with persons diagnosed with dementia.  Many were depressed, angry, resistant, unable to focus for more than a brief moment, or simply were not coherent at all.  I would often have to come back to a person’s room several times a day or miss my own lunch break to facilitate a feeding session during his or her mealtime while my tummy growled.  There were the difficult families, co-therapists who would “steal” your patient throwing off your schedule, the CNAs who wouldn’t bring the client to the clinic, or the patient who almost always needed a diaper change before we could fit in any therapeutic activities.  Standing tolerance, functional transfers, and self care were easy goals to fit in when the nursing staff just couldn’t fit in the care needs of their residents; occupational therapy gotter done.  I wiped a lot of bums in the process.

It’s another thing to try to help an aging family member 1,000 miles away with a range of personality, behavioral, cognitive, and early physical changes.  I am having difficulty managing the frustration of dealing with a person who can make decisions one day and not the next, seem to engage in manipulation/pity partying/whining then be as sweet as sugar, ruminate on minute details for hours, and complain more than converse about most everything else.  She has changed this past year for sure then other times she seems just like her old self.  I just didn’t see some of these more difficult characteristics before this year and before I understood that the diagnosis of a brain disease has made everything in her life more complicated.  Of course she wants to make her own decisions and we agree.  Of course it is hard even a year after diagnosis to accept that she is having problems and needs help.  And when depression, anxiety, and compulsive tendencies take over, it is nearly impossible to help her to keep moving forward.  I just don’t know what to say or do sometimes.

I could do nothing.  My husband and I could do nothing.  Instead we have offered to help and have devoted probably 100 hours of such thus far.  She has asked to stay with us this summer then backpedaled when picking apart every detail of the visit that will not be perfect, problem that will not be solved in the way she would like.  I am sorry.  We just cannot move across country to cater to your every need in sunny Florida my dear!  There are always limitations to what any caregiver, professional or family member, can do for a person in need.  We will likely continue to help her and have started to set some boundaries too.  I am still in recovery from a serious illness and, while I can do more than when I first discovered her illness just 3 months ago, there are limits.  Should she come she will have to contribute some financially and is reluctant to do so.  She will need to follow the routines of our household and is reluctant to do so.  She will need to leave a tropical climate for the ravages of the four seasons in the Midwest and is reluctant to do so.  She wants to see what it would be like to live with us but isn’t sure she wants to come for a visit.  Whatcha gonna do lady?

Tonight I am frustrated.  The Lord has set me on a path to healing with a trip to a medical specialist that happened to reside in a town near my beloved family member out of state.  It seemed to be providential that I would spend some time caring for her as I could when in town for medical visits.  We prepared for each trip for many hours on the phone and followed up for many more thereafter.  I helped her with 2 day-long projects in-person with great physical consequences for me after the last time I was in her town:  travelling alone for the first time in over a decade and only 5 weeks into recovery from a new treatment that is working!  Geez oh man.  I just don’t know how much more I can do until I am further along in my healing process.

The stress of caring for my beloved family member, even at a distance, is weighing heavily on my heart and frame tonight.  I know I am called to help her some.  The amount is unclear for every time I set a boundary there is push-back.  My ability to manage stress has changed since battling a serious illness  for over six years.   I am saying no, making things as clear as I can.  My hubby wants to accommodate her this summer (and permanently if desired) as best we can yet to do so could create some financial and scheduling chaos.  My beloved family member is not yet willing to consider some things that we see need to be done for her personal protection and safety long-term.  We understand that these are big decisions.  However, waiting seems to just foster more indecision on her part, more stress on our part as her potential caregivers.  Dear Lord, what shall we do?

We are grieved that my family member has strained relationships with several family members who are not fully ready to attend to all that is needed to care for her.  She hasn’t been able to talk directly with them yet which puts us in an awkward situation with them should she have us proceed in our role as caregivers.  We are grieved for the sorrows that her and her children have endured trying to make sense of the heartaches in their pasts and how it strains their relationships today.  Conversely, I have only good memories with my family member so I’d like to think that I am a little more level-headed in honoring her wants and needs.  Who knows?  It is still hard to care for her varying emotional states on a daily basis.  Good golly, why still struggle when there are two people who love you, seem to care about you the most right now, and are willing to invest their time and energies in doing so?  Help us out here my dear:  will you be spending the summer with us or not?  Will we be making some major purchases to help make the visit more comfortable for all of us or not?  I do hope we know the answers to these questions in a couple of days.  This distance caregiver thing is running me ragged!

Stay tuned, Gentle Reader.  We are praying for guidance, peace, and the same for our family.  Let’s all take a deep breath and take care, k?  JJ

Pursuing The Next Big Thing

Well I gave a detailed rationale in a recent post for me pursuing TMJ/TMD treatment to help alleviate intractable seizure attacks that have plagued me for the past 6 years.  Basically if the cranial nerves that exit the brain at the top of the neck are pinched from tight or misaligned muscles and tissues around the face, neck, and jaw then pain and a myriad of neurological problems can follow.  A physical trauma, especially auto accidents, often starts the problem.  Dental professionals who specialize in this area can provide relief for movement disorders such as Tourettes Syndrome, Parkinson’s Disease, tics, dystonia, and atypical seizure disorders using various dental appliances and therapies.  My research into this began a few weeks ago after an Ear Nose and Throat Doctor suggested I look into issues related to one of the twelve cranial nerves (vagus); I found that my symptoms involved seem to relate to several of them and require a broader, more functional bio-mechanical perspective.

Sooooo, since TMJ pain began for me after an auto accident in 1996 and worsened with convulsive episodes beginning in 2012, I brought up this topic with my chiropractor and brilliant primary care doctor this week.  Both agreed that specialized dental appliances are a good avenue to pursue.  Both have provided supporting medical documentation to support my case and the latter reviewed the Curriculum Vitae of the Dental Specialist that I have selected (after interviewing 13 dental professionals from around the country!).  My hubby and I are prayerfully preparing to proceed accordingly, with faith and confidence that the treatment will be effective in due time.

Once we made the decision, we had no idea what would happen next.  There are significant unknowns in this process, not the least of which is a significant financial commitment for specialized care out-of-pocket and for out-of-state travel for nearly 3 weeks.  We just knew that I needed a new treatment direction and that these new interventions seemed compelling to address many problem areas (’cause hey, even chewing food can trigger episodes!).  The next steps were for Steve to approach his employer for an extended leave of absence and for me to start scheduling appointments, making campground reservations, contacting family in the area, and so on.  Gentle Reader, it’s only been two days and the following blessings have already come to light:

Steve’s employer granted his request for a leave of absence and will provide a company computer so that he may work remotely while we are away.  Harris’s company headquarters is about 2 1/2 hours away from my new Doctor’s office by car and for the second week of our trip, Steve will be able to share an office there with a former coworker he knows who transferred there 2 years ago.  Awesome!  And guess what?  His employer is located near the Kennedy Space Center where Harris will be launching a ROCKET FROM CAPE CANAVERAL right in the middle of the 4 days we will be staying in the area!  Holy cow!  How cool is all of that?

Just a week ago, I finally was able to get in touch with a best friend from my childhood with whom I have not spoken in around 37 YEARS.  Guess where she, her sister, and her Dad live?  Very close to the same town where I will be having my treatment!  They were a huge part of my growing up years, especially after my parents were divorced when I was barely a teenager.  Tammy and I spent hours playing house or school on her back patio after dragging outside a myriad of furniture and supplies from both of our homes.  Sometimes we had just gotten things set up and her mom would come home from work so we had to put it all away again!  Then there was the backyard carnival we made to raise money for the Muscular Dystrophy Association.  Her little sister, Patty, dressed up like a gypsy to give words of wisdom in the “fortune telling” pup tent!  Their Dad was so very sweet to me when I would see him working in the yard, carrying tools along the sidewalk between our houses.  His kindness was very comforting at a tender time in my life.  All are good memories indeed.  I look forward to seeing each of them!

Halloween, 1960s, 1967, front porch, Linville, Warren, Michigan, Kids, children, costumes

From right to left: Julie, little brother Rob, Tammy, Tammy’s little sister Patti, and another neighbor at Halloween in 1967 or so!

If that wasn’t enough, we also hope to see an Aunt of mine who has lived in the area for decades.  Steve and I last visited her 5 years ago when I was near the beginning of this illness.  When I talked to her on the phone about maybe seeing her, she disclosed that she is struggling with a serious brain disease and having difficulty functioning.  My heart sank.  She explained quite candidly that her ability to perform activities of daily living has become increasingly compromised over the past year such that she doesn’t want to live alone anymore.  She has not been able to obtain assistance from her medical providers in obtaining the supports she needs.  It is not clear how aware my two cousins are of her condition; I may be the first person to visit her home for many years as all of us live 1,000 miles or more away.  My heart is breaking for her while my mind as a licensed occupational therapist is churning with the possibilities of what this all means.  Steve and I will start to sort this out by going to visit my Aunt with the goal to simply love on her, bring a meal, and visit for awhile.  Lord knows what will follow thereafter, likely some phone calls to my cousins up north . . .

Gee, if all of this has transpired in just 2 days, I wonder what awaits us in the next week?  We are praying continuously about everything mentioned here as we begin to make our travel arrangements.  There are repairs needed on the travel trailer and much to do.  What is certain though, is that our Lord Jesus Christ is already paving the path before us.   He always does, of course, and this time we are in awe as we can see it unfolding as we speak!  Very likely we will need to raise some funds for my care so stay tuned for the details and please pray with us as we embark on this magnificent adventure.  I have been through dark times before and have seen the Lord miraculously “restore the years the locusts had eaten.”  (Joel 2:25)  Sure looks like He is moving again in our lives right now in a big way.  Thank you for coming along side me with each post here, each little tear.  You make a difference just being there reading this, tracking my story.  God bless you for hanging in there with me!

Gentle Reader, I have hope again.  :J

Christmas Letter 2016

Steve and Julie’s Christmas Letter 2016

Our celebration this year may be described as one of humility, gratitude and perspective. So here ya go from the perspective of each of us here in Indiana:

From Elle, the Dog

I must say that they have treated me pretty well and the all-natural dog food is great! All I had to do (don’t tell them) was continuously lick my paws until they were nearly raw then BINGO (!) along comes fancier cuisine and a Greenie chew bone every couple of days.  We all know who is in charge over here as I near my 8th birthday . . . the gray hairs on my jowls now bring distinction as Chief Pup.  My favs remain:  chasing radio-controlled airplanes and cars in addition to rabbits & geese!

From Julie

Holy cow, I’d like to say that I have been cured after 5 years of serious illness but that would not be the case. Lots of things are better as I continue in awe and gratitude for so much including having married the most loving husband in the world!  I am now treating chronic Lyme disease with IV antibiotics and working with a brilliant Naturopathic Physician/Genetic Coach.  For more details please see: http://www.justjuliewrites.com  Lord willing, I am going to get well!

We have been able to travel with the “Tin Can Ranch” 5 times this past year to the: panhandle area of Florida and Fort Rucker, AL; Silver Dunes area in Michigan twice; Air Adventure at Oshkosh, WI; Steve’s United States Canoe Association Nationals in Northfield, MA.  Our trip to Texas for Thanksgiving was cancelled; we hope to figure out another way to see Steve’s family this winter.  When in AL, we got to celebrate Steve’s son Daniel’s wife’s graduation from the Army as a Blackhawk helicopter pilot, followed by an enjoyable tour of the area in a civilian copter with Elizabeth as the pilot!  Lord willing we will see Patrick-n-Kate and our 2 grandsons when in NC in January.  With Christina in Thailand and Rebekah (and Pancho to join soon) in Spain, Skype connections are our norm around here.

Our gardens flourished in their 9th year with the clumping bamboo finally making a showing and the blackberries deciding to produce in their 5th year.  Just gotta’ be patient, right?  We enjoyed a cute kitchen herb garden (on the covered porch), peppers, cucumbers, tomatoes, kale, radishes, and lettuce too.  Tis a good thingy that Elle doesn’t miss her outdoor pen that has been turned into our “Secret Garden” now that she is an inside dog!

From Steve

It’s been an active year, with many good things and a few “firsts.”   Julie has been the most incredible wife, supporting me and helping me in all my endeavors, in spite of dealing with significant illness.  I couldn’t ask for a more loving wife or a better partner.  God is good! J  Julie has covered most of the travels with our camper and kid activities, but I want to accent a few of those.

I’ve long wanted to see the Oshkosh airshow – the world’s largest – and with a change in my company’s vacation policy this became the year it was possible (Julie gave the trip to me as a birthday gift – can you say “awesome wife”?!?). What an incredible show!!!  The airshows were phenomenal, the number and types of aircraft were mind-blowing, and if you have any aviation inclinations at all there was probably something there for you.  On the down side, it seems to have reignited the bug within me to finish those flight lessons I never completed so many years ago.  And the thought of building an airplane…  All of which may be behind the radio control model plane getting a bit of a workout lately.

Paddling has been a huge part of our life in many ways these past number of years: I race kayaks and outrigger canoes, Julie and I produce Canoe News Magazine for the US Canoe Association (USCA), and I have a side business (River Bear Racing) selling Stellar Kayaks & Surf Skis (and supporting gear). We were blessed this year in each endeavor.  In spite of some physical challenges that somehow seem to come from aging, I did well in all my local races and managed a 3rd place overall in outrigger canoe at the USCA Nationals this year (don’t ask about my kayak race – that fell apart!)  River Bear Racing roughly doubled in sales this year, turning a profit and allowing me to add in some additional products to the lineup.  You can see our website at www.riverbearracing.com.  And Julie and I were able to produce some well-received editions of the magazine (always a good feeling after all the work that goes into producing a magazine).  See the magazine at http://www.uscacanoe.org/canoe-news.   But the biggest blessing of all was getting Julie out a few times to paddle this year, both in one of our newest Stellar S16S surf skis and in our old favorite Huki tandem outrigger canoe.  With Julie stuck in the house so much due to illness, it was a real blessing to be able to get out on the water together at those times.  And one of those times was at a church marriage retreat on Lake Wauwasee – something she wouldn’t have been able to attend the last few years.

Otherwise, work is going well, and the new owners (Harris) seem to be doing good things for the company. I’ve been able to get in a lot of cycling this year, particularly appreciating the long, warm Fall we enjoyed in Indiana in 2016. Church is a very central part of my life, and it has been a huge blessing to be part of an excellent Bible teaching church (http://www.harvestfellowship.us/).  I planned on teaching some additional classes this year at church (I periodically teach classes on parenting, firearms safety, and paddling), but I had to lay a bit low this year.  We’ll see what 2017 brings.  Whatever comes in the new year, I am always thankful for the salvation of the Lord and the life that He has given me!

Kid News

Somehow we managed to drive the kids pretty much to the farthest corners of the earth; no worries about “boomerang kids” here! Christina continues to faithfully serve the Lord in the far flung land of Thailand (a long paddle past CA) and seems to be doing well overall.  Rebekah was my relatively close child, living with her husband Daniel in the foreign land of Chicago, but her youthful wander lusts got the better of her and off she went to Spain to teach English.  Husband Daniel will follow this December after he finishes his master’s degree.  The boys are both theoretically in the USA, but being on opposite sides of the Continental Divide and on opposite coasts, they might as well be on different continents.  Patrick and Kate continue to enjoy the east coast life in Newbern, NC, raising sons Jackson and Warren.  I did get a chance in the Spring to drop in and play grandpa for a day – something that’s quite a rarity for me.  Daniel and his wife Elizabeth, heeding the words “Go West, young man,” followed the advice quite literally and settled in Tacoma, Washington on the western coast.  They’ve found Washington State to be a strange place, but they’re gradually adapting, learning to chase the homeless heroin addicts out of their cars and such…

Wrap-up

No matter what our perspective may be, the most important view at Christmas is the one that brings us closer to the person of Jesus Christ. We stand in awe of His sacrifice for us that brings unspeakable joy, knowing Him as Lord and Savior over all.  He loves His own more than words can say:  the best Christmas gift of all.

Love to you and your family,

Steve, Julie, Elle

A different kind of Christmas

Perhaps it is a sentiment of many Dayspring and Hallmark greeting cards to define Christmas as “the most wonderful day of the year.”  For a believer in Jesus Christ, the day is one of the most meaningful:  celebrating the birth of our Lord and Savior.  But perhaps the most significant holiday is actually celebrated on Easter Sunday as we recall the sacrifice that Christ made in dying on a cross for our sins such that we may have everlasting life.  No sentiments are implied or required:  the truth is that He came to save, the truth is that He is Lord of all!

Isaiah 9:6-7New King James Version (NKJV)

For unto us a Child is born,
Unto us a Son is given;
And the government will be upon His shoulder.
And His name will be called
Wonderful, Counselor, Mighty God,
Everlasting Father, Prince of Peace.
Of the increase of His government and peace
There will be no end,
Upon the throne of David and over His kingdom,
To order it and establish it with judgment and justice
From that time forward, even forever.
The zeal of the Lord of hosts will perform this.

I can almost hear the victorious singing of Handel’s Messiah in the background as I read these words.  Such is the confidence that we have, the joy we know as believers in Jesus Christ!

Many days when my life is a “nothing burger,” these words are just about all that I have for comfort.  My Christmas and Easter in 2015 were not filled with either the people or activities of a typical Christian holiday.  There were no church services dressed in better finery, homemade treats enjoyed in the basement afterwards with the dearest of friends, or family dinners filled with laughter and much feasting.  The décor around here was the same as it is every day.  I could go on with all that was cut due to the ravages of severe illness but I won’t.  Perhaps you get the idea Gentle Reader?

I spent each of these holidays staring into nothingness for much of it yet also with nothing to distract me from seeking the face of my Lord.  My prayerful meditation was uninterrupted and peaceful.  Warm, loving glances came from my beloved Steve whose presence is one of the greatest gifts I could ever ask for in my life.  Even our furry friend Elle is always a special delight with the gentlest of brown eyes, the softest of fur coats.  I did get somewhat of a break during the middle of the day on Christmas in which we connected with family via Skype and the phone, MacGyvered a tasty meal of sorts, and opened some sweet gifts for our eighth Christmas together as husband-and-wife.  Yeah God for special moments like these!

In two days we will continue and conclude as many of these traditions as we can in a gathering with my husbands adult children and their spouses.  They graciously will attend to the mold/fragrance-avoidance practices needed for me to host them in our home.  Since it may be my only time to see them when they are in town from their respective States and countries, I do pray that I may be able to participate in every moment available.  They are wonderful young adults and I do love them so!  I have simplified our menu and Steve has begun the preparations.  We have spent extra time finding special gifts that would be meaningful; one of them may even serve temporarily as a different kind of “Christmas tree!”  We’ll see.  I still have to pull that one together!  Eeeek!

So if you too have changed things up a bit for this Christmas season, know that you are not alone.  I understand completely.  It’s o.k.!  This holiday along with Easter in the Spring have nothing to do with Santa and the white bunny carrying chocolate eggs.  These special days have everything to do with a decision we each make in our hearts about Who we will serve as Lord over our lives.  Where have you placed your trust dear friends?  With a personal relationship with Jesus Christ, we will have a celebration that will never be limited to a date on the calendar.

Charlie Brown Christmas

Nothing beats a Charlie Brown Christmas message:

And with that decision made to follow Christ, every day will be a different kind of adventure that transcends the moment into all of eternity.  Yeah, I’m on board for that one.  Will you be along too?  JJ

My Other Dad

This past December we celebrated the 80th birthday of my father-in-law, Rees.  He is an amazing man:  retired Air Force Lt. Colonel, retired mechanical engineer, and now retired financial advisor.  He still bicycles many miles along the southern California coast each day to the beach, takes a nap in the sunshine then heads home again.  He keeps active in his church, as an avid reader, solving crossword puzzles with impressive speed, and keeping up with the latest in the lives of his children, grandchildren, and great-grandchildren.  I am grateful to be his daughter-in-law in addition to being married to his wonderful son, Steve!

Camera 1 066Hey My Other Dad:  here’s a belated birthday present from our visit together in Austin, Texas.

Enjoy everyone else too!  JJ