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

New Skills

1 Corinthians, believer, Christian, not be wasted, don't give up, hope, not in vain,

If I had to create a resume today the contents would be a bit different for these past 5 years.  Web design?  Yup.

When I get concerned that my professional skills have eroded, I remind myself that life is measured more than by occupational achievements.  Later I will write about the journey for meaningfulness that led me to simply trust the Lord with each moment, each day.  For now perhaps what they used to call a “Functional Resume” is in order?  So here I submit a list of new things for which I am grateful to have learned despite being sick every day for over 5 years.  Surely the time was not wasted!

Developed 5 websites:  1 on Etsy and 4 on Word Press.

Self-published an eBook, Hope Beyond Lyme:  The First Year.

Taught myself how to make macramé and handcrafted jewelry, developed Trinity Jewelry by Design, sold hundreds of pieces online and at 5 events, then sold the business 2 years ago.

Learned about Lyme disease, mercury, Candida, seizures, epigenetics, biologic dentistry, shingles-and-other viral infections, biotoxin illness PLUS their respective testing and treatment protocols.

Learned about social media, ecommerce, blogging, Pinterest, Twitter, LinkedIn, Yahoo-and-other online forums, Skype (formed a prayer group), basic video production, online banking/PayPal, how to use a smart phone with Apps, and the like.

Became an Advanced Master Gardener.  Achieved the highest-star rated sustainable garden at our home.  Finally harvested our own blackberries!

Experimented with special diets for health:  ketogenic, low oxalate, low glutamate, gluten-free, SIBO, and the usual dairy/sugar/sweetener/mold-free diets.

Became an Assistant Editor to my Editor/Husband for the quarterly publication Canoe News of the United States Canoe Association.  Learned the basic features of MS Publisher and PowerPoint.

Experimented with various methods of detoxification for health including full spectrum infrared sauna, colon hydrotherapy, Epsom/mineral salt baths, lymph massage, and various binding agents (zeolite, benonite clay, fulvic acid, Intestinal Metals Detox, acai fiber, cholestyramine, chitosan, Welchol, etc.).

Learned about environmental toxins, extreme mold avoidance, types of masks to reduce exposure, cleaning strategies, remodeling, and more.

Implemented energy conservation, work simplification, home safety, accessibility, and novel coping strategies (that I used to train my patients!) to manage changes in my physical abilities.  Trained my husband in same, often in times of medical crisis.

Began a “telehealth” arrangement for part of my healthcare with a naturopath/genetic coach out of State.

Learned to camp in a travel trailer with my beloved hubby, Steve, and our German shepherd pup, Elle.

I bought my pick up truck 5 DAYS before I got sick.  Quickly, I learned to drive a truck then how to pull a trailer, haul stuff, and manage a 4-wheel drive vehicle.

Learned basic upholstery crafting to make all new cushions for our travel trailer and two custom cushions for a medical office.

Successfully navigated a complex and long disability case despite ongoing nightly  seizure attack episodes frying my brain at times!

Perhaps there is more yet I will stop here.  As an occupational therapist, I am trained to assess the life skills of my patients and how these are affected by his or her medical condition or disability.  Its as if the Lord knew that I would need the very skills of my profession to handle the devastating effects of a complex, serious illness 30 years after my career began.  In the past I’d often “re-invented” myself at work, moving from mental health to rehabilitation then home health care.  My work included contract work, consulting, and even a public speaking program called the Living Safely ©Program. Just about everything that I ever learned in my profession has helped me to cope and begin to overcome my current situation.

So when I shed a few tears for the setbacks that come, like last night, they simply do not last very long.  Or at least I can clear my mind more quickly than in the past.  Gratefully, I have other things to think about other than illness:  things I can still do when I can get up and get moving again.  And maybe, just maybe, when the seizures stop for good, all of this learning will bring glory to my Lord and Savior as He has helped me get through each moment . . . oh and Stevers too of course!  My husband is a saint!  And very wonderful.

Be encouraged, Gentle Reader.  Lord willing, I am going to get well!  I will be praying for you too this night.  Let’s hang in there, k?

Take care,

JJ

Psalm, 73, 73:6, God, heart and my portion forever, Lord, sustains, sickness, hope, always with me, Holy Spirit, trials, coping, Christian, believer, Jesus Christ

Revelation, 21, 21.5, make all things new, believer, Christian scripture, hope, help

The Missing Needle Nose Pliers

 flat nose pliers, jewelry making, o ring, jump ring, making jewelry

Husband asks:   Where are my needle nose pliers?

Wife answers after a long pause:  I might have sent them to Minnesota . . .

And then another looooooong pause follows with:  silence!

Sometimes the logic of the moment doesn’t make sense to anyone else but oneself.  Know what I mean?  Hey, I was selling my jewelry business this past Fall and wanted to send along all of the tools that the new owner would need.  I noted that there was a nicer pair of pliers in the tool cabinet so surely hubby-dear would agree that I should make my customer happy to have both pairs needed to successfully open and close jump rings?  Besides, I did ask him about it didn’t I?  He did not remember me asking him.  I did not remember it exactly either.  Well DeeAnn in Minnesota is happily making jewelry and that’s all that counts, right?

Well maybe not.  Within a day I made sure that we picked up for my beloved, a nicer Stanley-branded pair with ergonomic, non-slip grips at Walmart.  Win!  Win?

We employed a similar rationale four years ago when I never really recovered from acute hepatitis.  For more on that story, see the About Julie page here.  It seemed the right thing to do to use an alternative technology to treat Lyme disease when a trial of antibiotics left me wretchedly ill.  Sadly, the Beam Ray Rife machine hurt me, sending me into a tailspin.  There would be no easy solution(s) to this complication.  I developed seizure attack episodes within 3 weeks of running very short programs on the unit which exposed me to various frequencies of light and sound waves.  A dozen or more local folks using their own machines noted benefits.  I did not.  I sold it about 1 1/2 years later with a net loss of $1500 and what has become 4 years of daily convulsive episodes.  This weekend there have been 3 major and several minor wretched episodes within the last 24 hours.  Lord have mercy!

Beam Ray, Rife, sound, light, wavelength, alternative medicine, Ray Rife, Lyme disease

Beam Ray Rife machine

 

As you can read in the link noted above, we have tried many different kinds of valid treatments coached by skilled practitioners.  I have benefitted from taking down mold exposures and illness, mercury toxicity, Candida, parasites, and the extraction of 2 root-canaled teeth.  Even so I feel like a beaten puppy!  But now we know that they very likely are related to Chronic Lyme Disease requiring the use of powerful doses of IV antibiotics for many months.  Seven weeks into the treatment I can tell you that there are some positive changes.  Unfortunately I am having complications from the weekly IV infusions so later this week I will have a port surgically placed in my chest wall.  This becomes a direct-access site without the need for sterile dressings that irritate my skin or superficial phlebitis that has plagued my forearms for about 3 weeks.  (Thank the Lord that I discovered horse chestnut gel when the warm compresses did not help.)  I am also hoping there won’t be any more violent episodes with the treatments. Even intramuscular injections have been exceedingly difficult.  Whew!

So there ya go.  A funny story, an update, and a little hope beyond the saga of late.  Lord willing, I am going to get well!  And when I do I might just get out my own tools here in Indiana, not Minnesota, for digging in the garden.  By the way, Spring weather is forecasted for this week .  Since I won’t be tethered to an IV line I can safely get a little dirt underneath my fingernails if I am up to it before the surgical procedure on Thursday.  The garden pup is ready.  You could say that I’ve traded the needle nosed pliers for an aluminum shovel!  So let’s get to it . . .

I wonder how those carrots are doing that got left in the ground last fall?  Having a little extra time in the soil should make them as sweet as candy by now dontcha know?  :JJ

life began in a garden

Be true to who you are

This song will make the point of this post more clear.  Have fun as you listen to this upbeat tune from the Beach Boys!

<img class=”alignnone size-full wp-image-4432″ src=”https://justjuliewrites.files.wordpress.com/2015/12/beach-boys.jpg” alt=”Beach Boys” width=”480″ height=”360″

“Just like you would to your girl or guy.  Be true to your school.  Rah rah, shish boom bah!”  And Gentle Readers I submit that this also applies to US TOO!

In a recent trip to the Emergency Room (yeah same story, different day) I was received by the male nurse who did my initial evaluation less than a month ago.  I remembered the gooley, inappropriate look on his face as he handed me a hospital gown and asked me to change clothes then waited for me to do so right in front of him.  He had the gown opened just below his eye level.  His eyes were staring at my chest.  The expression on his face was blank.  And I didn’t buy it one bit.

I really don’t know how I had the presence of mind in the middle of non-stop convulsive episodes and a struggle to breathe to ask him for some privacy.  He paused for a moment then looked up at me.  “Of course,” he said or something similar and handed me the gown.  He pulled the hospital curtain and continued typing on the portable computer just beyond what is also called the “privacy curtain.”  My beloved husband, Steve, assisted me in changing my clothing thank you very much!  My dignity in an extreme moment of vulnerability was spared.  Thank you Lord.

I know that this nurse is a medical professional.  He has probably seen thousands of naked bodies and women a lot better endowed than yours truly.  In a time of crisis, the medical professional assists a patient in changing clothes as a part of the procedures.  Yeah but they are not to do so while acting in an unprofessional manner.  He was not going to help me in that moment unless I was dead!  Period!  The rest of that visit went more cordially and more appropriately.  I changed clothing on my own after the assessments and treatments were completed about four hours later, thank you very much.

Flash forward to this past Tuesday night.  Mr. un-Wonderful was working the p.m. shift again in the ER and begins his nursing evaluation.  I cringe.  This time it was a petite, blonde nurse co-worker who asked me to donn a hospital gown.  The dude was within arm’s reach of the gurney upon which I am lying.  I felt his eyes upon me.  In that moment, shaking violently with convulsive episodes and struggling to breathe, I was glad that I had been trained as an occupational therapist and muttered as much.  As such I know more ways to dress and undress than the average person with virtually any disability that you can imagine.  I laid the gown over my clothing, covering my personhood, and struggled then succeeded to doff my own clothing and get into the approved garb.  Steve might have helped some; I don’t know as my eyes were closed.  The nurse  wasn’t happy but I was.  And in doing my own thingy, I remained true to myself.

The rest of the ER visit went as they usually do.  After about 750 cc of fluids, IV Rocephin, and a shot of Morphine (my first ever!) I was feeling better.  While the second bag of IV fluids diminished the severity of the episodes, the tremulous part of the episodes didn’t stop until after the Rocephin.  And that improvement lasted for about a day with barely a tic attack here and there.  Yeah God!

Now I am in the aftermath of trying to decide what to do.  The prescription Keflex (same cephalosporin drug class as Rocephin) has begun irritating my stomach.  While there were findings of a urinary tract infection in the ER, the urine culture was negative.  There are still fewer and less intense episodes overall:  the hell that plagues my life and keeps me clinging to the Cross of Christ for hours every day.  My Doc says to stop the Keflex.  I held the herbal Biocidin (anti-microbial) after the ER visit to avoid an interaction with the new prescription drug.  What shall I do now?  Hmmmmmmm.

I know what my gut is telling me to do:  be true to myself.  I will pray for the Lord to guide my very wise husband and me.  I will strive to be respectful to those trying to care for me with as much courtesy as I can muster in any given situation while protecting my own privacy and integrity when it is all that I have.  In due time we will figure all of this out and be much better for the journey the Lord has allowed for His purposes and our good.  Of this I am still sure.

And if anyone tries to tear down my alma matter, Mott High School and the mighty Marauders, well then I will be “true to my school” as well.  “Go team,” I will shout on high!   Lord willing, we are going to win!  JJ

 

 

The Day is Never Really Wasted

Missing my Dad.

Closing my online jewelry shop.

Cancelling a dinner invitation for me with new friends.

Spending the morning and evening in bed with complications of illness.

Questioning the utility of a new treatment before it really has begun to make a difference.

Perhaps you can see where I am going with this?  No where productive, positive, encouraging very fast.  These are the kinds of days when I question the value of each breath (that almost stopped twice today).  These are the evenings when I wonder why I try to plan anything away from our home anyways?  These are the days that I cry a little more than usual.  And these days are necessary, really, to grieve and move on.

When I worked as an occupational therapist in rehabilitation, we often told our patients that, “recovery is a jagged line.”  Oh how I have found that to be true these past 3 1/2 years!  Looking back to the beginning and middle of this period of time, there were many times when I am sicker than I am now.  There were many unanswered questions, new treatments to try, expenses that exceeded our income, strains on all of my relationships, and lifestyle changes that seemed too much to bear.  So many questions came to mind as the weeks extended into months and years:

I wondered if I could continue to get to know the gals I’d just met at my church or my husband’s adult children, make any new friends, or succumb to the ill-effects of isolation instead?  How much suffering could my body endure without permanent damage to my brain, neck, back, or other bodily functions when the convulsive episodes were so violent?  Would I embarrass myself in public, get into an accident in a public place, or be found on the floor some evening by my beloved husband (who was already stressed and sleep-deprived)?  Why on earth did I have to endure such hellish nightmares, flashbacks, and heart-wrenching grief at this time in my life when I had worked so hard to become free of so much sorrow in my past?  And most of all, would anything good come from all of this:  would it be wasted time and effort after it was all over?

Some of these questions have been answered by now and some have not . . . yet.  I have made many new friends.  The process of getting to know my hubby’s children has been slower than I would have liked yet it probably is for the better; we are living a long-distance from all four of them which makes everything a little different too.   My mind has actually become clearer with the extreme dietary measures, reduction in mercury toxicity/dental issues, and healing of my gut (since the brain and gut-health are related don’t ya know?).  The physical consequences of illness will require some more treatment soon but at least my weight is stable and the overall deconditioning has still allowed me to perform most of my activities of daily living.  Further, when I felt sick in public or driving down the road, I was always able to rest in my vehicle thus avoiding an incident, gratefully.  These last two are amazing to me:  the Lord’s angels must be protecting me when I am away from home.

Steve and I have found ways to cope with the nightly convulsive episodes, sudden physical collapses that require assistance with my self care, and challenges to our intimate life on occasion.  It helps that Steve is wonderful!  It helps that he relies on the Lord and fellowship with strong believers to see him through this season of our lives together.  His faith strengthens mine too.  Although we can’t be together as much as I would like to, it helps me to know that I can trust him and look to him for spiritual direction, spiritual leadership.  This is God’s plan for the home, for marriage.  And as that design plays out between us, I know that the Lord is strengthening me too.

The Lord has never left me or forsook my faith in Him.  Even in near-death experiences, demonic attacks (and there have been more than I can count), and times of deepest despair, my Jesus has carried me through it all.  The spiritual peace that developed certainly has served to clear my mind, bringing me to a place of clarity I had never seen before I got sick.  Renewal of our minds is a gift and a promise only the Lord can give as we read the Bible.  I am grateful for His work through this process.

I really don’t know if looking at the female hormone/menopausal connection with the onset of seizures (and its related testing and treatments) will be fruitful or not.  Is it catamenial seizures?  I do know that I am probably going to make some more new friends trying to figure it out!  Some more new connections will also be made in the synapses of my brain as I study a whole new body of information.  Letting go of my hobby business today and getting focused on a more professional venture will challenge these new skills, quite possibly moving me from this disabled state to one of productive living.  Oh how I hope so!  This incredible experience has inspired a new product that I invented and eBook that I am writing.  That is cool, eh?  Yeah God!  Perhaps things will come together just as they need to and when the timing is right?  This season of time will have served its purpose; it certainly will not be wasted.  This Father’s Day will just be a microcosm of the larger picture with all of its days, its parts playing a role:  good, bad, and ugly too.

And in the end I know that the good will outweigh the other two.  How compelling of a story would I be able to write if everything was always hunky-dory?  Nope.  It would be boring.  On the stage of life, we are to live fully no matter what happens to us.  We are to live like the sign on the wall of the therapist’s office that I saw when I was searching for meaning in my life at just 24 years old:

Bloom Where You are Planted, trust in the Lord, overcomer, overcoming trials, Christian response to, faith in Christ, hanging tough, Bloom, Christian blog

Yeah.  Evelyn at Catholic Charities had it right.  And the gardener in me wasn’t even awakened yet when I read that banner!  The motto of that poster has encouraged me over and over again, becoming the foundation of my life’s work as an occupational therapist and helping me to re-invent my career a half-dozen times.  As a believer in the Lord, Jesus Christ, I can see that He is the God Who uses all things for His glory.  Someday you and I will get to see how these gnarly threads of our lives have woven together to create a beautiful tapestry that characterizes the life of one surrendered to Christ.  With that hope I can face tomorrow and all that it brings.  With that hope I submit to the will of my Master Gardener, my Lord.

With that hope you can too, Gentle Reader.  Bloom!  With love, JJ