What This Caregiver Misunderstood About Self-Care

As a caregiver, I know the importance of self-care.  Heck, my friends and co-authors have written books about it!

I know, really know, how critical self-care is for caregivers. 

It is extremely important for caregivers to find a moment to breathe.  To call a friend.  To treat ourselves to a pedicure.  To continue to paint or take photos or garden or spend time with grandchildren – whatever our passion might be. 

All of that is critical to the well-being of caregivers. 

It isn’t enough, though.  Not even close. 

After my small stroke I realized I completely misunderstood self-care. 

Stress can be very deceiving.  Sure, a pedicure can be glorious for an hour and even for a little while afterwards but it does not peel away the layers of stress that build up while caregiving.  What I have learned is that stress wraps you up like a cocoon until you can barely breathe and it does so quickly and quietly.  We may not even realize how ensconced stress is in our very soul because we are too busy caring for someone else (or several someones). 

After my stroke, I realized that pedicures and massages were terrific ways to relax for a bit but it was not the self-care I needed. 

I knew I was a caregiver who gave it my all but I had forgotten to take care of myself too. 

Self-care has to include making time for doctor appointments for ourselves.  I actually went in for my preventative care mammograms and had annual blood work done but I didn’t pay any attention to the results.  I had fairly high cholesterol for years but never talked to my doctor about it.  It didn’t occur to me to mention that my mom also had high cholesterol and that my dad had incredibly high blood pressure.  As a caregiver, I would have logged all of this information for my loved one and informed the doctors and helped formulate a plan of action.  For me?  I didn’t do one thing about it. 

 

Self-care has to include exercise.  I know – annoying!  This is something I always told myself I should do but rarely did.  I absolutely loathed it when I read how important it was to exercise.  Who were these people who had all this time?  I, as a caregiver, certainly cannot find the time to exercise.  In fact, I convinced myself that the physical labor I was doing for Robert and the constant movement of caregiving was enough exercise.  Certainly the restocking of supplies, taking Robert to and from the bathroom and helping him change his clothes – all of that – was enough exercise for me.  I was constantly on the move until I collapsed into bed exhausted.

That all changed after my stroke.  My doctor said to exercise and, after hits and misses of the best time to do it, I found a time.  I found 30 minutes in my day to walk.  In fact, sometimes I can even find an hour. 

Self-care has to include noticing what we, as caregivers, put in our mouths.  Are we drinking soda or water or too much alcohol?  (I hated drinking water and would often drink soda.  Worse, sometimes I would go all day without drinking anything.)  Stress, hospital stays and other emergencies are terrible for our eating and drinking habits.  This was a very busy year in the hospital for our family and I routinely grabbed a pastry, French fries, brownies or other junk food to sustain me.  In fact, during one particularly stressful time around Easter I literally only ate Cadbury mini eggs for an entire day.  No joke. 

Go ahead and gasp but I assure you I am not the only caregiver to eat crap on a regular basis. 

All of the self-care quick refreshers I’ve written about in the past are important but I also know they are not enough.  What caregivers really need is respite.  I mean a real respite.  A length of time that does not include sorting medications, dispensing medications, taking vitals, washing urine soaked clothes or driving to physical therapy and doctor appointments (all while working full-time).  

A respite that includes getting as much sleep as we need! 

Unfortunately, respite is very hard to come by for caregivers.  It is incredibly difficult to arrange and usually impossible to find.  Robert has a social worker who is supposed to find us 14 days of respite – per year!  I can’t even imagine such a luxury!  However, that benefit is on paper only.  It is actually fiction because there are not enough care homes available for Robert’s level of care.  This creates more work for me to find a Skilled Nursing Facility or other care facility to accept Robert for a short period of time.  Not to mention the cost involved in sending him to a private pay SNF! 

Caregivers need the respite but we have to work our butts off (even more than we already do) to get it.  Sometimes we give up and just live with the fact that respite is not available.  Sometimes we just can’t afford a respite.  Caregiving is expensive enough! 

I am not giving up this year and, especially after the experience with the Skilled Nursing Facility last year, I will make sure Robert is assessed properly so he does not suffer falls again.  I will make sure his medication schedule is attached to the doctor’s referral so he gets his medication when he is supposed to and I will keep my fingers crossed for success. 

I will try not to worry while I am away.    

Self-care is hard work but it is vital and it is more than a moment or two of peace and quiet.

I don’t know if I would have listened to anyone saying all this before I had my stroke but I hope someone listens now.  I thought I was doing enough with pedicures and massages but it was not enough.  I won’t give those up because they are fantastic but they are not enough. 

Not nearly enough. 

Caregivers: you are too important not to take care of yourself too. 

We are worth the effort too. 

Don’t Freak Out but I Had a Stroke

Yep, that’s what I have been saying to people lately.  I look the same but, yes, I had a stroke.  Not a TIA but a small stroke.  My episode in March now appears to have been a TIA.

I am okay and I am very, very lucky. 

The stroke was an Ischemic Stroke in the right side of my Thalamus and caused the whole left side of my body to go numb.  A week ago, I had a couple of episodes like what happened in March (slight tingling in my hand and face but not bad) just before my whole left side numbness. 

My new home office decor

I knew this was a problem so Rach took me to the ER and I was seen immediately.  The hospital started their stroke alert protocols and put me in a room.  They did a bunch of neurological tests and I didn’t have any weakness; I was able to read, talk, touch my finger to my nose and to the doctor’s moving finger and saw all the fingers she held up.  I know these neuro tests as Robert goes through them all the time at his appointments but it was very surreal having to do them myself.

My only symptom was that I had numbness and tingling (kind of like my left side was asleep). 

After passing everything with flying colors, they didn’t think I had a stroke.  Stroke alert was cancelled but they ran some blood work and did a CT scan just to be on the safe side.

They still didn’t think I had a stroke. 

I only had the whole left side numbness.  (Let me tell you how odd it is to have half your forehead feel numb!) 

The doctor had no idea what the issue was and suggested it was possibly a panic attack caused by stress.  Yes, I have a lot of stress in my life but I haven’t had a panic attack in years and I have very specific triggers for them. 

I knew this wasn’t a panic attack but also know that stress does weird things to the body. 

I didn’t know why I had numbness, the doctor didn’t know but it seemed reasonable to think this wasn’t a stroke.

So we left the hospital.  We all thought the numbness would be gone by morning. 

When I woke up on Sunday, my leg numbness was gone but I still had the numbness in my left arm and face.  My face felt like I had a Novocain shot from the dentist except without the drooling. 

The ER doctor called to check on me and became concerned that I still had numbness. She ordered an MRI and, as luck would have it, there was an appointment later that afternoon.  I’ll take it! 

Rach went with me to the MRI (poor girl was so worried about me and I hate worrying my family!).  I tried to convince the radiology tech to show me my scan but he refused. I pulled the “I won’t know what I’m looking at” ploy (even though I have seen enough of Robert’s MRIs to know if mine was normal or not).  He must have seen right through that so I left without seeing my scan.  Oh well. 

The next morning Richard had a third skin graft surgery so Robert and I drove him to the hospital and got him settled in pre-op.  Robert and I waited with him doing his word search book and me answering emails from work.  I called to set up an appointment with my neurologist and found out he had scheduled a phone appointment for me so I waited for his call.  He was on vacation but had been answering my emails and was on top of monitoring what was going on with me.

He soon called and told me what happened Saturday night was, in fact, a stroke. 

You mean a TIA? 

No.  You had a stroke.  

Believe me, hearing that is enough to practically cause another one!

He told me I needed to start on blood thinners immediately and he wanted me to take a “load” dose of four pills then one a day along with the aspirin.  He also increased my cholesterol medication and told me to go to the ER if I have any other symptoms. 

He called the meds into the hospital pharmacy since I was already at the hospital and I took Robert to get them.  The pharmacy was up a hill so I set Robert in the shade and told him to stay put.  He joked he would go to France.  Funny guy.  I’m worried about my stroke and he is cracking jokes.

Probably the best thing for me. 

I called Rach, a couple of friends, Other Brother and realized I couldn’t even tell Richard yet because he was still in surgery!  After taking the meds and talking to everyone I started feeling numbness in my leg again and freaked myself out. 

Since the doctor had said to go to the ER if I had any other symptoms, I walked to the ER, pushing Robert.  I called Rach for me and Richard’s brother, Jimmy for Richard.  Jimmy was actually at the same medical facility at his own doctor’s appointment so he came over to check on Richard while I went to the ER.  Rach met me at the ER and ran between me and Richard to update him when he came out of surgery and to keep an eye on me. 

Robert sat in a corner of my room and contentedly worked on his word search puzzle. 

I explained to the doctor what was going on and he was very reassuring.  He explained that it was unlikely I was having another stroke since I just loaded up with blood thinners.  He called the neurologist on call and ran more blood work and did his best to keep me calm.  He ordered a heart monitor for me and, after a short while, I was able to leave and visit with Richard in the post-op room. 

It was quite a day. 

I’ve since seen a stroke specialist who ordered more tests, more lab work and answered all my questions. I’m waiting on all the results but, in the meantime, I need to watch my diet, exercise more and reduce my stress. 

Reduce my stress. 

After the year I have had, I am ready to do just that.  Yes, it is cliché but I am going to say it:

This was a wake-up call.

My neurologist said I am very young (why, thank you!) and in otherwise good health.  She sees no reason why, with lifestyle changes, this will not be a one-time thing. 

She even said that my residual numbness in my hand and face and the occasional leg numbness will most likely go away eventually.  I would love for the numbness to go away but, right now, I am using it as a constant reminder that I need to make changes. 

I am very motivated to do so and am very grateful the stroke was a small one.

Note to Universe: Close call with a semi?  Stroke?  Got it.  Message received.  Loud and clear!  (And thank you for not adding dribbling to the face numbness – that would have just been piling on.)

The Trouble Seeing Miracles in a Challenging Year

This has been such a crappy year (and, yes, I realize it is only half-way over!).  I am wishing so hard it would be 2019 that I actually have written that down when dating a document or logging Robert’s vitals. 

2019 cannot come fast enough. 

Anyone who knows me knows I do not like to be negative or whiny or mopey or depressed or wallowing in self-pity but I have seen all of that in myself this year.  To make matters (and my mood) worse, I kick myself for not immediately seeing the “bright side” or the “miracles” in a situation (or several situations, also known as 2018). 

Sometimes life is just a crapfest.

Caregivers know this yet we get kind of stuck in a bad mental cycle.  As one of 44 million caregivers, I know there are others with much worse situations than mine.  That feeds into my mindset that I “should” be able to be more positive.  Not to mention I am a positive person and get frustrated when I lose that piece of myself. 

Caregivers also know how difficult it is to continue to talk about everything going on.  I get tripped up when people ask me if things are going better.  No, not yet.  They really aren’t.  We have a lot going on and some of it is not better.  I want to say things are better and HURRAY life is looking up but find myself apologizing for things not being better!  Holy cow, sometimes things are not getting better; much of what we deal with are chronic conditions that are not going to get better. 

Sometimes life just sucks.

When things are really terrible or continue to not be better, co-workers and the cashier at the grocery store don’t want to hear that.  Even some family tires of the near constant updates of hospital stays, non-healing wounds, seizure clusters, surgeries and whatever else might come up.  Ongoing crap makes people uncomfortable. 

Sure, to the cashier and some co-workers I will say everything is fine (ha! Isn’t that the standard line for caregivers?)  To friends and family, sometimes the best I can muster is “things are stable.”  And that’s only if they are!  That could be for the hour, the day or, if we’re lucky, for a week. 

Who wants to hear that?  People want to hear that you are better!  Life is on the upswing!  We want roses, puppies, unicorns and rainbows! 

Believe me, that’s what I want to say.  I really do want things to be excellent and happy and carefree! 

For caregivers (and I would venture to actually say “for anyone”) that isn’t always possible.  Not all the time, anyway.

Sometimes life piles on. 

It has taken me a lot of extra effort to be able to see that, yes, we have had many miracles in the midst of this challenging, difficult, crappy year. 

Our miracles?  We have had plenty. 

Just this year, Robert has been in the hospital multiple times for the flu, pneumonia, sepsis, a respiratory virus and a five day video EEG study which turned into a week-long stay when his seizures caused aspiration pneumonitis.  He could have succumbed to sepsis or gone into status epilepticus but Robert pulls out miracles all the time.  This year has been no different.

Richard has had two skin grafts and an intrathecal pump replacement, broken finger and expects to have another skin graft this summer.  Richard’s initial skin graft was mostly successful and it is only the last 10% that we’re trying to get healed.  His leg pain has diminished greatly and that, in itself, is a miracle.

Carol has been hospitalized for pneumonia and a fall and has been teetering on the edge with extremely low blood pressure, a wildly varying pulse and water retention and an INR number that jumps around more than it should.  She has lived with us since last November and having her around has been its own kind of miracle.

Even our nineteen year old Shih Tzu has had a couple of strokes and, at one point, didn’t appear to be able to last through the night.  She has recovered and is back to her feisty ways.  A miracle is the only way to describe that feat.  I am convinced she still hates me but miracles can only go so far. 

Throw in my own emergency room visit and follow up appointments and scans for TIA-like symptoms and then getting side-swiped by a semi-truck and I have much to be grateful for.  Adding an aspirin and cholesterol medication to my daily regimen has stopped the scary stroke symptoms and the whole semi-truck incident is nothing short of a miracle itself.  Robert and I had no injuries and my car is still drivable.  You would never guess from the damage that it was caused by a wayward truck driver.  Volkswagen (and our angels) for the win!   

Despite finally being able to see and appreciate the miracles, my stress level is at maximum capacity.  All these situations come with a lot of expense, more doctor appointments, more medications to track and take up a great deal of time. 

Call me a wimp but I am ready for a break. 

I know that for things to change, I need to make changes.  That is not to say Robert’s seizures will stop or Richard’s leg will magically heal because those are things we do not have control over.  What I can change is what I do for me so I can better handle the stress of this difficult year.  Even the phrase “self-care” makes me cringe sometimes but I know that’s exactly what I need.  Getting a pedicure with my daughter doesn’t stop Robert’s seizures or Richard’s pain or a truck from driving into my lane while I am still there but it does give me an hour to recharge, laugh and get some pretty toes and relaxed feet. 

Planning a cruise with Richard for our 20^th anniversary is not going to take away the stress of whether his leg is ever going to heal but it will give us some time to focus on something other than the day to day doctor appointments, upcoming surgeries and caregiving responsibilities.  (By the way, our 20^th anniversary was last year but caregivers have to be flexible.  In our minds, it is still our 20^th anniversary celebration!)

Even seriously considering a schedule change at work becomes more of a priority for me in order to reduce my overload of stress.  I cannot continue to beat myself up for trying to successfully work a difficult job and be a compassionate caregiver and feel like I am failing.  When I am losing patience with actual nice people at work and at home, something needs to change. 

I cannot lose who I am because of the stress of a difficult year and being an impatient, cranky madwoman is not who I am.  Change must happen because I am not going to lose myself to worry and stress.  

It might take a miracle for change to happen but sometimes we have to create our own miracles and that is my plan for the second half of this crappy year.

Bring on the miracles!

Three Years

Three years ago Robert moved in with me and Richard.  Three years!! It really doesn’t seem possible it has been that long.

I took over Robert’s care at the end of 2008. Since that time he has lived in a Skilled Nursing Facility, an Assisted Living Residential Facility and a Board and Care Home.  Before that, he lived with his companion in their own home.

There were issues and stress with each arrangement. Robert was ill during the SNF stay and we were just coming to terms with the fact he could not safely live on his own. Almost simultaneously, I found out his living at home situation was worse than I had imagined (letting a homeless woman live with them who then gave Robert a black eye, living amongst piles of clutter and being taken advantage of by unscrupulous charlatans to name a few). 

The Assisted Living Facility was fine for a while (remember all those bingo wins and the piles of Milky Way candy bars he would win?) but his mobility declined and he needed much more assistance than they were able to provide.

Then came the Board and Care home.  Hmm.  Don’t even get me started.  I wrote extensively about the issues experienced there but can sum it up like this: they were not used to family involvement and did not take it well when I would not back off.  This was a very stressful situation and time.

Bringing Robert to live with us was not an easy decision, however. With Richard’s own health issues and chronic pain we wondered if we could keep up with Robert’s needs and slow but steady decline. Would it be too much for Richard? Too much for me? How could I juggle Robert, work and helping Richard when he was in need?

To the surprise of absolutely no one, I created my “pros and cons” list. I debated the list in my head, Richard and I discussed the current situation, the options and The List and we made the decision to have Robert live with us.

Over the years, Robert‘s mobility declined, his seizures increased and his bouts with pneumonia and sepsis were a regular occurrence.  Urinary (and sometimes bowel) incontinence were a fact of life.  I knew Robert needed a lot of assistance when we moved Robert in with us.

The bottom line was that there is nothing quite like home. That and I am such a control freak I realized I would be the least stressed if Robert lived with us and I could make the decisions regarding his care without a bunch of meddling from other people.

I figured Robert would live with us for a couple of years before it got to be too much.

Two years passed and we were still caring for Robert. 

We passed the three year mark last week.

During these three years, there have been plenty of times (sometimes several times a day) where I do think it is too much. 

Most of the time, though, what I have found myself realizing is that Richard and I work well as a team and we keep coming up with better, more efficient ways to care for Robert (we have enough durable medical equipment in the house to start our own medical supply store).  We split the tasks and even moved into a one story house (which couldn’t have happened without the help of Other Brother and our daughter, Rachel, and her fiancé/aka Real Estate Broker extraordinaire).

Not to mention, Puppy grew up and (kind of) learned the concept of personal space.

Pneumonia hasn’t been a two or three time per year occurrence for a couple of years (yay!). It has been almost two years since he was hospitalized (not counting those pesky ER visits for some of the worst of his worrisome seizure clusters).

Don’t get me wrong, it is certainly not all puppy dogs and unicorns and sunshine.

Robert needs a lot of help with his daily tasks: dressing, cleaning up in the restroom, bathing and brushing his teeth.  He has numerous appointments with his neurologists; swallow disorder doctors, pulmonary docs, the dentist and weekly physical therapy. There is always some paperwork to be completed or medications to be reordered or picked up. It is a family joke that CVS is my second home.

It gets to be too much sometimes and I throw myself a little pity party when I pass a camper/trailer on the road that says “fun finder” or realize there are people that can actually go to dinner with their spouse or on a weekend getaway on a whim.  

Sometimes I want a pass on the other crappy things life throws at me or my loved ones.  See this plate, right here?  Just a little full.  See those good people in my life? Universe, leave them alone!

ENOUGH.

But I can’t let my pity parties last long - no one likes a pity party.

Especially kindness.

I am reminded of and overwhelmed with the kindness of others. Rachel and Matt stayed with Robert one evening so Richard and I could go to a dinner out. A dinner with my husband! Woohoo!

Strangers have gone above and beyond helping to find Rachel’s foster dog, Lily, who was lost at her newly adopted home. They have no idea what else we are dealing with (nor do I know what is going on in their lives either) but their kindness and effort has melted my heart.

Watching Robert share a deep, spiritual connection with Richard’s mom and seeing him ease her out of her depression is inspirational to me. He doesn’t even realize he is doing it.

Three years.  Three years of care, laughter, frustration, family, joy and, yes, the unexpected crap that inevitably comes along in life.

It hasn’t been easy but I am not ready to quit. I will take care of Robert for as long as I can and then I will figure out what the next best step is for him. 

In the meantime, we are going to continue to live life, do the best we can, laugh, be kind to others and keep the pity parties as short lived as possible.

Sorry, Not Sorry

I have a friend who is a caregiver to her husband who has Early Onset Mild Cognitive Impairment. G-J is a dynamo! She cares for her husband which involves numerous doctor’s appointments, medications, classes to help brain function as well as many, many other tasks. She teaches at a local senior care home, is a freelance writer, manages to spend time with her college-age son and is a busy volunteer with the Alzheimer’s Association. 

Other Brother and I after a wild ride on a roller coaster

in Santa Cruz (2007)

Like I said, she is a dynamo.

She is also one of the authors (with me and three others) of the book 365 Caregiving Tips: Practical Tips from Everyday Caregivers (which is on sale now!!).  Our emails to each other regarding this book and our next book project (regarding travel tips for caregivers) or just to say hi sometime start with “I’m sorry I haven’t responded sooner.”

She is busy; I am busy; caregivers are just really busy. 

We are busy caregiving, advocating, planning, chauffeuring, managing a crisis or three and trying to maintain friendships, relationships and balance.

We end up saying sorry – a lot.

G-J and I finally decided we did not need to apologize to each other any longer.  I have this agreement with all of my other friends who are caregivers as well.  We might be late in responding to emails, phone messages, self-imposed deadlines or a check-in text.  Now, we may be late in responding but apologizing is no longer a part of the conversation (or at least we are trying to eliminate it from the conversation).

Sorry, but not sorry.

I tend to feel responsible for anything and everything which leads to a great deal of apologizing. No more.

Sorry, not sorry.

(This is hard for me, actually. I want to apologize, I feel the need to apologize but I can’t continue to apologize for things that are many times out of my hands.)

Caregivers are busy but we do not intend to be late in responding. We do not mean to slide in at the last possible moment to a doctor’s waiting room (yes, I had Robert use the bathroom before we left the house but he either needed to use it again once we arrived or had an accident on the way and needs to be changed). I am not intentionally late nor am I so disorganized that I arrive late. I plan ahead and give us plenty of time to get to appointments but there are times when we will be late.

Sorry, not sorry.

(I think maybe this will be easier to say the more I say it.)

Of course that pang of guilt hits me in my gut when I realize I haven’t talked to Other Brother in six weeks or when I am late for a hair appointment because Robert was in the ER all day (and there was no way in hell I was going to miss that hair appointment after that stressful day!). Or when I realize I only wrote one blog post in a month. Ugh!  I do wish I could do everything I intend to at the time I want to but sometimes that just isn’t possible.  

Sorry, not sorry. 

(Oh! But I am sorry but I just can’t continue to feel guilty about the things I am not accomplishing right now.)

Caregiving is certainly not an 8 to 5 job.  It is unpredictable, stressful, relentless and exhausting. Add to that a passion for advocacy to help other caregivers, a passion (and need) to write and then squeeze those in between caregiving tasks and working full-time.  Other caregivers understand this so know that no apology is needed when an email sits unanswered or a project deadline passes or our tone gets a little terse.

“Sorry” is not needed. 

I will certainly do my darndest to make it appointments on time, answer emails and keep my projects on track. I will do my best to be sure my frustrations don’t leak out in the form of snippy comments. I will even be mindful of the promises I make to myself whether it is regarding writing or self-care. 

If I slip, know that it is not intentional. Know that my “Sorry, not sorry” is about me giving myself the grace to slip.  Know that I might be saying I am not sorry but we both know I am. 

At the risk of making more promises I can’t keep, I think I will at least promise Other Brother a phone call.  Well, at least a text.  A text I can do.  Just in case that doesn’t happen, let me just take care of that now:

“Hey, bro! How are you? I miss you!”

See?  No sorry needed. 

March Interview with Denise Brown

In the March interview with Denise Brown of CareGiving.com, we talked about the stress of a working caregiver. I realized during our conversation there is a baseline of normal for my stress level and then there is a line that when I cross it, know I am under too much stress.

I feel it from my toes to the top of my head. I am tense and focused on plowing through the situation. My lips are pursed, my eyes are squinty and I forget to eat, drink and go to the bathroom.

Grumpy Cat - Always full of wisdom

Stress builds up and is manageable until it isn’t.  It can be one little thing that makes me cross that line (an unexpected work project; a deadline that has been moved up; a cluster of seizures Robert experiences or the question “why don’t you handle ‘insert project here’ this way?”).

I AM GOOD AT MY JOB SO LET ME DO IT!

There is a line and I know when I have crossed it.

I get cranky (see above) and need to indulge in self-care.  What if there isn’t time for that?  Then I postpone the self-care for a short-period of time (a day, a week) but I know that it will happen. For me, self-care is usually a manicure or pedicure (or if I am really indulgent, both). If my schedule is so packed that I cannot indulge in that block of time, I know that I have to do something to relax – maybe just watch a television show or have unproductive computer time (you know, watching cute cat or dog videos).

Where is your line?  What do you do when you have crossed from the manageable stress level to the “I CAN’T TAKE IT ANYMORE!” level?

I invite you to share what pushes you over that line in the comment section below.  

Also, please join us the second Saturday of each month to listen live so you can participate and ask questions or comment in the chatroom during the show.  I look forward to the show with Denise and as we also discussed this month, the shows are a great collection of the ups and downs of caregiving – each month is a new episode.

Denise asked what I hope to talk about in April. I told her I hope to have the house sold and have us well on the way to moving into a one-story house. That is an episode I would like to end soon!

I think I might actually yell, “That’s a wrap!” when we sign on a new house – someone get me a megaphone!  

Thank you for listening (and reading). 

The March show can be heard here.

Drastic Times Call for Drastic Measures

Winters are a stressful time at our house. 

  

Pain: Give me my husband back

Richard, (aka, hubby), has increased back pain due to many factors: the cold weather, the extra activities from the holidays, the increased stress due to the holidays and, of course, the denial that the pain has increased. Not to mention not remembering this happens Every. Single. Year.

For my part, my job is extra stressful from November through January.  Year-end projects are a nightmare and ever since getting appendicitis a few Januarys ago, my co-workers and I joke that I lose body parts during year-end.  Add in the stress of the extra activities (yes, I know, I bring on a lot myself with my wild ideas about holiday decorating), and, of course, the denial that the pain my husband feels has increased.  Not to mention not remembering this happens Every. Single. Year.

This year, we have the additional responsibility (which, yes, is stressful) of caring for Robert in our home. We haven’t yet experienced a full year of Robert living with us so we’re still working through routines, helping with his ADLs (activities of daily living), keeping him well so he’s not in the hospital or dealing with his hospitalizations (three since he moved in).

Oh, yeah.

I also flunked my stress test which meant having to do another, more intense stress test which really stressed me out. 

Richard’s pain keeps him up at night and going months without a decent night sleep is stressful on everyone. He has tried sleeping pills which are not working; he has tried meditation which doesn’t make him calm or sleepy; he has tried staying up all day without napping but that only makes him crankier because he still can’t sleep at night. His doctor is going to have him do another sleep study but who knows when that will be scheduled.

Even though I can generally sleep through anything, his restlessness and periods of wakefulness throughout the night is starting to wear me out.  It is taking a greater toll on Richard, of course, but we both need him to get some sleep.

I wake up every morning knowing he is in pain (him bending over in pain and moving extra slow are a couple of clues).  I wake up knowing that he barely got any sleep yet I persist in asking, “How did you sleep?” 

Either I am an optimist or a glutton for punishment but I have no idea why I ask this other than I just want to hear that he slept well – for once!  

I want Richard to sleep.  I want his pain under control – after all, we went through a horrible ordeal in September due to something that is supposed to keep his pain under control. 

It isn’t and I demand a refund!  (Insert stomping feet and screaming tantrum here.)

Okay, it’s not that easy but shouldn’t something that can possibly put his life at risk be more effective?   We’re afraid to stop using the intrathecal pain pump (I say “we” because we’re in this together) because of the exponential pain he feels without it. 

Yet, he uses it and still has extreme pain. And stress. And lack of sleep. All causing more pain.

It is a terrible, terrible cycle – one which I can’t seem to change but am wracking my brain for ideas. 

Today, I took drastic step #1: I got a massage and a facial to deal with my own stress level.

Today, I also talked with Richard and told him I was taking a drastic step to see if it would help his sleep.  Because if he gets some sleep, his pain will eventually lessen which will lessen the stress we’re under because of this awful pain.

Drastic step #2:  Tonight, I am taking my pillows (and the dogs) to the room down the hall so that Richard has the best shot possible at getting some sleep. 

It’s a drastic measure and not a permanent one but I do hope to hear a different answer to my question, “How did you sleep?” (See above re glutton for punishment.)

The answer won’t be different after one night.  It might not even be different after several nights.  But we need to try anything at this point. 

The pain needs to get under control. 

I’d love to hear what you’ve done when you’ve come to the end of your rope.  What have been your drastic measures? 

This Stress Test is Stressing Me Out!

I don’t like being the patient.  When I am in the doctor’s office for Robert or Richard, I ask questions, I persist in finding answers, I think of myself as a collaborating with the doctors to figure out the best course of action to solve a problem.

When I am at the doctor for myself, I turn into a bag of marshmallows.  Not even the mini ones – one big bag of giant marshmallows. I can barely utter three words that make sense. Or that are actual words.

I have no idea why this happens but after confessing this to some caregiver friends, many said the same thing happens to them.  We can be tough as nails for our caree but when it comes to caring for ourselves – we’re scared little children.

Today I was the patient and I was determined to be as much of an advocate for myself as I am for Robert or Richard.  I put on my advocate hat and pretended I was caring for someone else.

My appointment was for an echocardiogram stress test since I apparently flunked the stress test I had just before Christmas.  The whole reason for having the stress test in the first place was because I had been experiencing intermittent chest pains and light-headedness. 

Since August.

Then September got busy and busier and October was filled with respite preparations, November took us on a trip and so the stress test got scheduled for December 16.

December 15 Robert was admitted to the hospital for pneumonia so I rescheduled my appointment.  I finally went on a Sunday, three days before Christmas. 

I couldn’t believe my luck in getting a Sunday appointment since we weren’t only busy with the holidays but work is extremely busy at year end and I didn’t want to miss any more work.  I didn’t particularly want to miss any shopping or wrapping time either but I had to get this done. 

Once at the appointment, I made it clear that the stress test was stressing me out.  I wanted them to know that if my blood pressure was high that I blamed the test.  Plus, I don’t really have time for this sort of thing but I wanted to be sure the chest pains and light-headedness (which still happened on occasion) wasn’t anything serious.

The test was easy enough (although I found out I am allergic to latex – good to know).  While running on the treadmill I had an inclination there might be a problem when the technician stopped the test sooner than he told me we would stop. 

Then he told me to wait in the waiting room while he consulted a cardiologist.

The only question I could mutter was “do you always consult with the cardiologist?” He answered that he did most of the time.  Then told me to go to the waiting room.

Did I ask any more questions?  Noooooooo.  That would have been too easy.  Was I freaking out?  Just a little. 

I dutifully went to the waiting room and sat until the nurse came out to tell me that I needed to contact my doctor as soon as possible the next day and to schedule a follow up test. 

He rattled off two types of tests, neither of which I remembered nor wrote down.  (You can bet I would have had my notepad in hand writing down these tests if I was with Richard or Robert at an appointment.  Heck, I didn’t even have my notepad with me!)

I managed to state there must be something wrong but the nurse just reiterated to contact my doctor the next day and said the cardiologist would be talking with my doctor.  He said the follow up test was “just to be safe.”

Oh, okay. 

Then I left.

Of course, as soon as I got into the car, I had all kinds of questions.  What test is it? What are they looking for? What did they find?  Was my blood pressure too high? 

And I thought I was stressed at the beginning of the appointment!

After emailing my doctor (and getting a message that he was on vacation for the next two weeks), I talked with a nurse the next day.  I grilled her about the results of the stress test but all she could tell me was that there was an abnormal reading that could indicate a blockage. 

Oh, is that all.  Ack!

Now, keep in mind, I come from a long line of over-reactors.  I don’t panic and I can usually keep a very cool head but I have an imagination that you wouldn’t believe. 

Let’s just say I researched the procedure for inserting a heart stent. 

More than two weeks later I had my follow up test which, as it turns out, is an echocardiogram stress test. I did my best not to stress out about the test but it wasn’t easy.  I sat in the waiting room listening to Adele, hoping her music would lower my blood pressure.  I read work emails and quickly realized that was not the best plan for reducing my blood pressure.

Before the appointment, I promised myself I would put on my advocate hat and ask questions. I brought my notepad with me. I had a speech prepared for the nurse that this was my health and I wanted answers today so if she can’t tell me something she will have to get a doctor. 

It was a good speech but I didn’t have to use it.

The technician was a wonderful young woman who told me her grandfather’s inspiring life story when I asked about a tattoo she had on her wrist.  She was kind enough to use paper electrodes when I told her my suspicion about being allergic to latex.  She explained the test to me and even retook my baseline blood pressure when I told her that it was so high because I was stressed about the test.  (The second reading was still high but better.)

The nurse came in and also thoroughly explained what was involved in the test.  She was tough, though – she said I couldn’t stop the exercise bike even if my legs were hurting and I was out of breath.  I asked about my first “failed” stress test and she assured me that this test would reveal blockage if there was any.  She said many women had false positives on the standard treadmill stress test which was an immediate relief.  I was able to see the pulse rate and blood pressure readings during the test which somehow was reassuring.  The nurse and technician continued to be supportive and answered all of my questions without hesitation.

Once the test was over, the nurse told me it was clear there wasn’t any blockage.  She said my blood pressure was high under stress and to follow up with my doctor about that but I felt so much better.  I explained my caregiving situation and she nodded knowingly and said to manage my stress with meditation or other methods.

It was not easy to get into advocate mode for my own appointment but, for me, I have to pretend I am there for one of my carees.  I have to prepare questions ahead of time, bring along my notepad and trust that I can talk intelligently about my own health with the healthcare professionals. 

I am not only part of a healthcare team that takes care of Robert and Richard but also me. It’s not easy to remember but it’s important that I do. 

My health is important too.

What is difficult for you about advocating for your own health?