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

Torture, water-boarding and more: Part 2

This story began in Part 1 with how I landed at The Balance Center on the last day of the year for the conclusion of my hearing and vestibular system testing.  That was yesterday and I am still recovering . . .

My mood was in a major funk as I was running late for my appointment (struggling to function), trying to hold off any tic attacks whilst still getting ready and out the door.  I am back into a 2-part fractionated sleep schedule to try and manage:  1) an increase in the nightly and morning convulsive episodes and 2) getting enough sleep.  Usually there are at least 2 nights when the number of hours of unconsciousness barely exceeds FOUR; the night before the appointment was one of them!  Eeee gads.  But by the grace of God have I survived to tell the story so let us continue!

A very sweet technician named “M” was assigned to walk me through the procedures to be performed in three rooms, each equipped with various test equipment, computers, and some funny-looking masks.  I’ll include some stock photos here to bring you into my world:

The Balance Center, vestibular, training, testing, dizziness, therapy, light-headed, physical therapy, rehabilitation, audiology, mask

Generally each part of each test was completed three times.  Most of the time “M” warned me about the challenge that was about to happen (except for the water-boarding shock that came later, unfortunately!).  In the first room I stepped barefoot onto a cold, 3-walled compartment in which the floor moved independently of the walls that also moved.  She harnessed me in with the same number of straps usually employed with bungee jumping!  I remembered hearing professional dancers talk about focusing on one object as they spun around doing pirouettes so I decided that would be my strategy all afternoon to avoid up-chucking early in the game.  It helped for a little while and I guess I did o.k. during phase 2 (with phase 1 being the audiology testing in October) although the dizziness, uneasiness, queasiness, and feeling of being lost-in-space began quickly.  She allowed me to rest a short while afterwards and for this I was exceedingly grateful.  My feet eventually started to warm up  . . .

brain testing, balance testing, vestibular, rehabilitation, Balance Center, dizziness, light headedness, physical therapy, audiology, ENTI hobbled to the next room labeled, “Rotational Chair.”  Holy crap.  I was doomed!  I never liked the Merry-Go-Round at the playground as a kid and now was the time to find out why.  You know what happens to the kids too scared to jump off, right?  This is probably why The Balance Center instructs you to eat only oatmeal in the hours before your appointment!  So with fear and trembling I stepped into what looked like the anti-gravity room at the Nassau Space Center.  The walls and chair in the “space capsule” were black, equipped with even more straps that comprised the harness and seat belt configuration.  This time my head was restrained as well with the mask pictured above affixed to my head.  Then she closed the door.  I was all alone in the darkness.

I wondered about trace specks of mold, fragrance, and other irritants from the travelers who had gone before me.  Should I have been wearing my carbon mask all along to avoid trace exposures?  My mind was so overwhelmed with the test procedures that day that I would not pull it out until the dire end.  For now, I was to spin in circles and watch the little red dot ahead of me, make the line straight using the “Play Station” controllers in each hand, and hope that the fraction of light peeking through the hinge of the door would re-orient me enough to go on . . .  My defenses were rapidly breaking down.

balance-testing rotational chair

“M” asked me probably 75 questions total that afternoon, spread throughout all of the test procedures.  Had I ever fallen?  Hit my head?  Gotten dizzy?  What about headaches?  Migraines?  Chemical exposures?  You get the idea.  In the chair of the Black Hole, those questions made it impossible to focus enough to use the ballerina strategy to keep my act together.  The nausea crept up inside me then miraculously never exceeded critical mass to prompt a return of my breakfast.  (I took the nausea medication I had with me later anyways!  It was the least I could do to calm things down!)  I am now getting dizzy and light headed just writing about this experience.

When “M” opened the Magic Door and set me free from my restraint, I slumped forward with my head plunging into my hands.  What the heck was happening to me?  Low grade tic attacks erupted.  I felt listless, unbalanced, disoriented, exhausted, sideways, unsteady even in my seat, like I was struggling to keep breathing (as if someone had pushed the air out of my chest), with increased ringing in my ears and a knife-like sub-occipital headache.  The sinus headache had returned as a bonus.  I asked if I could lie down.  She agreed since there would be supine positioning in the next room and testing anyways.  Great.  I strained to hold myself together long enough to make it to the torture chamber just around the corner . . .

balance testing, vestibular, lights, flashing lights, therapy, audiology, Balance Center, testing, dizziness, light headed, head injury, concussions

The usual nightmare met me on that treatment table.  Violent convulsive episodes displayed their wretched glory with deep vocalizations that I could not control.  On and on with no end in sight they came as I lain face down in the position I have discovered that causes the least amount of trauma to my banging neck and head.  My legs were cold.  My hands were cold.  The room was darkened yet the bright desk lamp next to the technician’s computer was too bright for my eyes just 4 feet away.  I struggled to raise my arm to shield my eyes and held on for dear life.

Why was I going through all of this anyways?  Would all of this trauma really yield anything useful beyond yet another human version of a “lab rat” experiment to tell me that something was very, very wrong.  NO KIDDING SOMETHING IS WRONG!!!  I asked for my purse and awkwardly donned my face-mask when I could get my hands to work together enough to do so.  Probably 20 minutes passed before the overt symptoms stopped:  the ones you can see, that is!  Inside I was seemingly beyond repair.  This was going to take a long time from which to recover.  I wept.  The more I write about it, the more I experience a slight flashback of symptoms.  I will pause here for a little cry.  More later . . .

Continued in Part 3

 

And then I got up

It was the most horrific of reactions:  writhing and such.

Even our pup could not make guttural sounds like me in my muck.

Earlier I sensed a reaction soon was a’comin’ . . .

And lo on the way home the tics started showin.’

So we showered once home, throwing our clothes in the wash

In case you think romance followed I’ll tell ya that was ‘nash —

Not the way it came down I say as I leaped into bed

Barely dried off and with a wet towel flung from my head.

An hour many would not survive followed me in there

I marveled as my lungs, heart, and mind would again persevere.

My beloved raised me in his arms to feed me some water

Then with more wimpers and smaller jolts he sensed the cause of the matter:

An older building, became soiled with everything one could imagine

‘Twas cosmetically upgraded with bright lights and smiles on everyone.

It was hard to tell during a visit as important as this

That there would be hell to pay later for pursuing a visit.

But that’s the way it goes when your brother finally gets the care he needs

In a 4-star nursing home upgraded from one he survived where they could subtract at least 3.

We chatted, we laughed and the pupster Elle provided all the charm

The rekindling of family love, fulfilled with treats from my oven still warm.

Then came the gift from my bro when Mike let me play O.T.

And minister to his contracted frame, providing hope to both him and me.

My skills were still there and his muscle memory someday could return

Lord willing we shall see His purpose and be grateful for this wild ‘journ.

So how can I complain that some new treatment of my own did not hold

When I just started 2 days ago then walked into a fiery test a bit too bold.

‘Cause long after the last jolt, the last choreathetoid seize

I was able to get up and make myself something to eat.

Now sitting here listening to my slumbering beloved who works in the ‘morn

I am grateful for so much although tonight so much is yet unknown.

“When will this crap end?” I ask myself and the darkened night air

“In just a little while,” responds the Lover of my soul Who holds my life in His care.

So even in this I will trust in the God Who has promised

That all things will be good.  Get back to bed.  Good golly it’s almost (morning)!

JJ

Mike and Julie at Medilodge in Michigan

Mike and Julie at Medilodge in Michigan

 

A Pig for Sale

Only in Indiana.  Or maybe in any other State with farming.  Well that would include all 50 States.  I guess it’s just new to me . . .

The Facebook page for selling stuff in my town had a posting for a pig for sale:  $300 for the live beast.  I actually thought about it for a moment!  The biggest issue would be finding a place to store all of that meat.  Our lil’ freezer just ain’t big enough for my hubby’s ice cream and my bone broth in addition to a virtual bevvy of pork!  Darn.  I’ve been missing BBQ ribs for some time now!

I suppose that someone else with a chest or upright freezer will jump on the offer.  Maybe our neighbor who bought our used freezer will find it in her budget to feast on Porky Pig for the rest of the year?  Or maybe not.  But if she invites us over for some Famous Dave-style ribs I am sure that we would oblige!  We will even bring my Grandma’s famous potato salad.  Yeah I won’t forget the horseradish, pickle relish, and bacon grease (aka “secret ingredients”)!

Porky Pig here.

Porky Pig here.

We live in a time where you can buy and sell just about anything.  With the diversity of our world and our accessibility to most of it via the internet, we can get much of what we want for a price.  Do you want someone to paint your business logo on his hairy belly and sing a song for you?  Just check out the gigs on http://www.fiverr.com and it will be yours for the price of a latte’.  My preference for that one would be “NOPE.”  That is, in the physical realm.  There are other realms for which I would need a song you know.  And tonight my heart realm can’t buy me even a lullaby for peace of mind.  My heart is breaking and there simply is not much I can do about it but pray.

My brother, Mike, whom everyone else calls Michael, continues to live in a wretched inner city nursing home after a serious stroke.  He is four months post-CVA and three months enduring the “3 hots and a cot” provided by a one-star facility.  I flipped when I found out that he had an infectious rash on his hemiplegic hand!  I asked his fiancé and Mike to check for signs of bed bugs and call the State Ombudsman immediately if they found any signs of them.  Mike’s roommate itches too.  Hopefully it will be a case of an allergic reaction to the laundry detergent.  But why would the bumps become infected?  Good golly.  Water (no juice, milk, or coffee) for breakfast, a delayed response for significantly elevated blood pressure, and no follow-up whatsoever on a 6 cm kidney tumor ARE ONLY THE FIRST THREE items in the long list of substandard care complaints.  So sad.

Lisa, Mike’s precious fiancé, is at her wit’s end trying to get Veteran’s Administration or Medicaid benefits processed correctly to change his situation.  She faithfully visits him when she can, brings him home-cooked food, and follows up the paperwork nightmare as Mike’s legal guardian.  Just when I wonder if things moving forward fast enough or why she hasn’t returned my phone calls I find out that she has started a new job to try an better their overall situation.  She is such a trooper.  Thank the Lord for Lisa’s love and care for her Michael.  And our cousin, Lisa, helps out where she can as well.  Cousin Lisa is an optometrist for the nursing home and has more than once been able to positively influence his care by her presence, her visiting, her dipomacy, her support of fiancé Lisa.  They are doing the best they can and that is both a gift and all I can ask from 200 miles away.

This is such a curious situation, you know.  I am an occupational therapist with over 30 years of professional experience including patients with the very same medical condition as my brother.  Yet due to a severe illness I am enduring, I cannot even visit him!  The dirty conditions of his living environment would surely trigger seizure-like attacks for me.  Chronic Inflammatory Response Syndrome, Multiple Chemical Sensitivity, or whatever you want to call this nightmare is keeping me from seeing my brother.  And this is the Lord’s plan for both of us right now.  I don’t understand it.  My heart is hurting.  I would be honored to work more closely with Mike, even provide supplemental therapy or visits.  I cannot do it right now.  Oh sure, I send him something in the mail occasionally or make a phone call to his facility and get placed on hold for a very, very long time before actually getting through to anyone less than 50% of the time.  We are all doing what we can and waiting on the Lord.  It’s just so very frustrating for each of us!

So if you’ve got an extra 300 bucks to donate to our cause, kindly send it to St. F—— Nursing Center in D—–, room 207.  Leave the pig and get my brother out of there please!  They might not notice Mike missing for awhile since a piece of meat is a piece of meat when you don’t care much for the sweet sense of humor that used to characterize my tall lanky sibling.  Oh geez, I’m getting a little upset here aren’t I?  Well at least the pig will stomach the food a little better without complaining.  Like the Cheerio’s commercial said many decades ago, “he’ll eat anything!  Hey Mikey!”  Yeah but it won’t be Mikey.  One day Mikey will be gone from the place he and his fiancé are calling, “the dump.”  May the Lord pour out His grace on those left behind when he does go.

I just hope that moving day will be soon.  O.k.  I’m done venting.  Gotta get back to praying.  JJ

sad pig

Inspired by Michael

Gotta love a wacky sense of humor!  Call it gallows humor if you will.  Today it is keeping me sane.

Here are a few momentos as I support my brother, Mike, recovering from a stroke.  Enjoy!  JJ

No Kidding!

No Kidding!

My favorite.  Have a good day all!

My favorite. Have a good day all!

 

oldcarguys pepsihope sick sense of humor strokerecoverysick sense of humoroldcarguyslife-support-computer-humorHIPPA humorheadnurseonfloor'Yummo Toothpaste contains no caffeine, and cleans your teeth better than Coke or Pepsi!'

This one looks like Mike!

This one looks like Mike!

Michael George Lech

Michael George Lech