The Housing Market through a Caregiver’s Lens

Searching for a one story house has proven to be fun, frustrating, disappointing, exciting, exhilarating and exhausting. 

It has also proved to be quite enlightening.

As a caregiver, I tend to see caregiving and caregiving issues everywhere.  Kind of like when a person buys a red sports car and all of a sudden red sports cars are everywhere! 

My house search has been a little like that.  Only, instead of seeing (and driving) a little red sports car, I am driving my grey VW Jetta from house to house to house with Robert tucked in the backseat with his puzzle book, a bottle of water and a chocolate shake.  Richard is the navigator and we either follow our realtor around looking at houses or visit open houses, snagging a cookie or more bottled water as we go. 

After what feels like years of searching for a house, I think I have become somewhat of an expert on the house search.  (Not yet an expert on buying since we’ve yet to land a deal but that’s beside the point.)

What has struck me the most is the amount of people in the market searching for a house without stairs or with enough room for a relative that now needs care. I have run into a friend searching for a larger house so they could accommodate her husband’s mom. They were moving her in because of her declining health.

At another open house, I overheard one couple lamenting how the house description said “one story” yet there were steps everywhere! There was one step into the living room.  Three steps to get to the bedrooms. Several steps down a deck to get to the backyard.  Try maneuvering around that house with a walker or wheelchair!

My favorite question to ask about a house is why the owner is selling.  Many times the answer relates to caregiving: The owner is selling to move to another city to care for her mom.  The owner’s wife died after he spent years caring for her (and remodeling their home to accommodate her wheelchair) and he no longer needs such a large house.

Our own reason for selling our beloved two story house is so Robert can have his own bedroom and Richard doesn’t have to limit his trips up and down the stairs to reduce his back pain. It’s heartbreaking to see Richard climbing the stairs in obvious pain after a long day and nearly impossible to get him upstairs after a surgery or back-related procedure. 

In our small universe I can see how housing needs have changed as people get older or take on caregiving duties or become disabled. When we first bought our house we were excited to expand our living space from a three bedroom apartment to a house where all three kids had their own rooms with plenty of other space for all the dogs, cats, hamsters and turtles who made their way into our hearts. Our house with the generous backyard and two large living spaces was perfect while the kids grew up (although having to share one bathroom during the teen years was, let’s say, a character building experience for them).

There are all kinds of reasons people buy and sell houses but I can see how caregiving duties influence the market perhaps as much as growing families do. 

It surprises me when I don’t see many available one story homes or when I see a two story with one bedroom and bathroom downstairs – and the laundry room upstairs! I suppose that would be helpful with the majority of family residing upstairs but it would be a nightmare for this caregiver who must hold the world-record for Most Loads of Laundry Washed in One Day (or is at least tied with every other caregiver out there). 

My heart skips a beat when I see a house listed with “two master bedrooms.”  What a treat that would be!  I have seen housing developments offer houses with a mother-in-law suite but not near enough from what I can tell.  It makes me wonder if there are any developers who are also caregivers.

I am not self-centered enough to think all housing should match my criteria (a reasonably priced one-story house with a large enough yard for all those animals we still have, in case you're selling). However, it would be nice if there were more one story houses available in the market so there wouldn’t be such a buying frenzy and bidding war with the ones that are available. Maybe other caregivers are holding onto those like the gold they are!

I am confident we will eventually find our house and settle into it, turning it into our “castle” in no time (to quote my friend Denise Brown of CareGiving.com).

But then I am holding on to it and appreciating it for the treasure it is for a very long time!

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? 

Goodbye September – It’s Been . . . Memorable

September has been quite a month (although, it is not at all unusual for caregivers to have weeks/months/years like this – and worse - unfortunately).

Enjoying a "normal" day

Let’s recap:

September 1:  Richard, Robert and I decide to go to a movie! The tickets were cheap, the popcorn was pretty tasty and the movie wasn’t bad at all.  What a fun way to start the month!

September 3, 7:00 a.m.:  Richard opens the front door for his routine intrathecal pain pump refill appointment which happens every 45 – 60 days. The puppy escapes and Richard and I chase him back toward the house.

September 3, 7:05 a.m.: The puppy escapes again just before I am able to get him back in the house. (I note that Taz is aptly named.) Finally, we are able to get him back in the house. (For real this time). Richard leaves for his appointment.

September 3, 7:10 a.m.:  Robert and I finish getting ready for work (me); and Day Program (Robert). We wait for Robert’s van to pick him up.

September 3, 7:45 a.m.: Robert leaves for Day Program and I leave for work. The puppy does not escape.

September 3, 2:30 p.m.: I leave work to go to a doctor appointment because I have been feeling dizzy. The doctor thinks it’s vertigo but wants to do an EKG to be sure. 

September 3, 3:15 p.m.:  While waiting for the EKG person, Richard calls me. He is groggy, slurring his words and tells me he’s in the hospital. He cannot give me any other information.

September 3, 3:16 p.m.: I leave the doctor’s office, briefly telling a random person I have to leave (I assume she worked there).  I realize Robert is going to be dropped off after Day Program in about ten minutes and Richard will not be there.  I call the transport company as I am racing home to explain why I might be late.  My phone is about to die so I cannot call the hospital until I get home.

September 3, 3:35 p.m.:  I call the hospital and am told Richard is in the ICU – my heart drops. I talk to a doctor while getting Robert from the van to the house. I find out he was inadvertently overdosed with 40 cc of Fentanyl during the “routine” pump refill.

Oh and no one from the pain clinic, the ER or the ICU called to tell me.

September 3, 4:00 p.m.:  I explain the situation to Robert and tell him we have to go to the hospital. He has to use the bathroom but finishes in record time and we rush off to the hospital.

September 3, 4:30 p.m.: Richard is lying in the hospital bed, completely passed out. Robert quietly sits in a wheelchair working on his puzzle book while I get an update from the nurse. Richard’s mom and one of his brothers come to the hospital; our daughters come to the hospital; our son is calling from North Dakota (acting like a tough guy but obviously scared). Richard’s other brother (who lives a couple of hours away) calls several times then makes the decision to come up.

Yeah, we’re worried.

September 4, morning:  Richard is still in the ICU on an IV of Narcan which is the antidote for this drug overdose. He is able to talk to us but is completely miserable and in pain (his head hurts and his back hurts. Oh right - there’s no medication in his pump since it all went into his abdomen).

September 4, afternoon:  The doctor decides to take Richard completely off the Narcan. Within less than an hour, he is unresponsive and his eyes are rolling in the back of his head. His mom and I (and the nurse) all try to wake him up.  The doctor rushes in and immediately starts the Narcan again. I’ve never seen Richard’s mom so scared.

September 5: Richard is slowly weaned off of the Narcan.  He is in extreme pain and horrible discomfort but there is hope he will get moved to a regular room soon.

September 5, 7:00 p.m.:  The girls and I and Robert leave the hospital to get some dinner. I park in the handicap space but forget to hang my placard and, yep, have a $450 ticket waiting for me when we return to the car.

September 5, 11:00 p.m.: I’ve long since left the hospital to get Robert home and ready for bed. Richard is moved to a regular room. I’m still cursing the dang ticket but am too tired to go online to appeal.

September 6: Richard is able to be discharged! His pain is still awful but the withdrawal symptoms have subsided.

Oh, it’s also Robert’s birthday and our 16^th wedding anniversary. Before going to the hospital, I took a birthday cake to Day Program for Robert so he would have a celebration with his friends. Happy birthday, Robert! Happy Anniversary, Richard!

September 7: I appeal the parking ticket and have charge reduced to $27.95 for “administrative” fees.  Otherwise known as “we want you to remember not to be an idiot in the future” fee. 

September 11: Richard has an MRI dye study done on the pump to be sure it is working properly. He also has the pump refilled to alleviate his pain (by the head doctor). This time, the medication goes in the pump like it’s supposed to.

September 12: It’s Richard’s and Other Brother’s birthday! Richard and I go out to dinner with one daughter (Rachel) and Robert.  Before leaving for dinner, Robert has an unusually long seizure with several minutes of confusion. Richard gets sopapilla for dessert and is a happy guy!  (Robert loves it too.) Happy birthday, Richard and Other Brother!

September 13, morning: Robert has had nasal congestion and a cough for about a week.  I take him to a doctor appointment and she starts him on antibiotics. His chest x-ray is clear.

September 13, (throughout the night): Robert has gone downhill all day so by bedtime, I wake every two hours to take his vitals.

September 14, morning:  We call the paramedics to get Robert to the hospital.  His behavior and symptoms are the same as the last two times he was hospitalized for pneumonia and sepsis.

September 14, later that morning: Robert is diagnosed with pneumonia and sepsis, surprising absolutely no one.

September 14, noon: Robert is transported to a regular room where he goes further downhill.  He is transferred to the MICU.

I let a morbid thought in: can he survive a third bout of pneumonia and sepsis within 16 months?

September 16: Robert is doing well so is transferred to a regular room. I ban all future morbid thoughts – Robert is a walking miracle.

September 17, 3:00 p.m.: I stop at the grocery store after working part of a day and before going to the hospital. I slip and fall and land on all fours (knees and hands).  My ego suffers the most damage.

September 18:  Today is daughter Caty’s birthday! Happy birthday, Caty!

September 20, 5:00 p.m.:  Robert is discharged from the hospital!

September 21: It has been 14 years since my mom died. I think about her frequently throughout the day.  (Truth be told: every day.)

September 26:  Richard’s leg is swollen much more than usual and extremely red.  He is complaining about his vein hurting in his upper thigh. His doctor sends him to the ER where everyone thinks he has Deep Vein Thrombosis.  The ultrasound does not confirm this and he is sent home with instructions to follow up with his PCP and a whole lot of Lasix.

September 29: The extended family celebrates all the September birthdays at our house. There is too much food, lots of noise and even more laughter. Things seem . . . back to normal (if you don’t count Robert’s lingering cough and Richard’s legs still looking like tree trunks).

It’s “normal” enough so I will take it.

September 30, 11:00 p.m.:  I wake up to Richard in the bathroom trying to stop one of his legs from gushing blood. He had scratched his leg and it spewed blood like in a bad horror movie. We finally were able to get the leg wrapped with several bandages and elevate his leg. We decide a trip to the emergency room is not needed but will call the doctor first thing in the morning.

October 1: Hello, October! I don’t know what to expect but after our September, know that we will get through whatever is thrown at us.  

Choosing Pain or Taking a Risk

Richard survived the unintended Fentanyl overdose and was released on Friday - our 16^th anniversary and Robert’s birthday.  It certainly was a day to celebrate!

What a difference a year can make.

 

Dinner in Rome - 2012

A year ago, we were in Rome and then on a cruise to France, Spain and Italy again. It was the trip of a lifetime (after a year, I can forget about the pain Richard was in after the flights, the lost luggage and all the extra activity).

No, this year my husband was lying in ICU because his doctor inadvertently filled his abdomen (instead of his subcutaneous intrathecal pain pump) with 40 ml of Fentanyl.

Yes, 40 ml.

Richard not only has the pain pump but has the “big boy.” I talked to the doctor in charge of the clinic (the one who has his name on the door) and he explained what happened called a “pocket fill.”  It’s rare, he said, and has happened twice since he started using the pumps.

After doing research and friends sending me information, this is apparently a known risk for these devices and there is a recall on them. The company doesn’t recommend removing them but developed extra precautions to reduce the risk of the pocket fills.

Note to company: they didn’t work (although I have no idea if the doctor even followed these “extra precautions”).

Last week Richard was going through extreme withdrawals and was miserable. We knew what would come next – the pain.  Since the pump refill didn’t actually happen, his pump doesn’t have any medication in it. 

This thing, as mad as I am about this ordeal right now, has changed Richard’s life. Before the pump, he had to control his pain with extreme amounts of strong oral narcotics.

He couldn’t drive; he had wild mood swings; he was grumpy and when he wasn’t grumpy, he was sleeping.

Good times.

A decade later, he still talks about not ever wanting to put the kids or me through that again. To him, he is secondary in the equation. He would love to be out of pain but, more than that, he doesn’t want to be that person again with his family.

I tell him that it is okay, that period of our life is behind us. The kids and I all understand what was happening. It was difficult but it’s over.

Now the pain is back. Extreme pain. Debilitating pain that stops him in his tracks and has my husband in tears.

The pump is not functioning and he is feeling the full effects of life without it. He cannot get comfortable; he cannot sleep yet he can barely get out of bed.  He cannot do much of anything except try to relieve his pain with a heating pad, heat wraps, a TENS unit, some Advil and a few of his Hydrocodone.

He has lay down in a tub of warm water; showered several times so the warm water can ease the pain.

Richard is usually boisterous and loud with an inner monologue that has no understanding of the concept of “inner.”

Now he is quiet.

He speaks softly and not often.

This is not my husband.

Unfortunately, we have not yet been able to find a different doctor who works on these pumps or who might have a different pain solution for him. Richard has to choose between living with this pain while we search for a new doctor or go back to the same pain clinic that put him in the ICU.

The lead doctor was not the one who overdosed Richard so Richard has agreed to return to the clinic but only having the lead doctor work on his pump (“routine” refills and everything). 

We had suspected the pump was malfunctioning before all of this and have been pushing for months to get that figured out. Richard was experiencing achy joints and all sorts of ailments (many symptoms of withdrawal) so the doctor suggests an MRI dye study to view the pump and see if it is working.

That is scheduled for Wednesday at 6:30 a.m. Because we have Robert, Richard’s mom will take Richard to the appointment and I will finish getting Robert ready for Day Program and then meet them at the clinic.

Richard has to be put under anesthesia for the dye study so he needs someone with him all day. I’ve taken the day off from work but I suspect his mom won’t leave his side until he wakes up.

This makes me nervous but I know Richard wants to be out of pain. Let’s see what is going on with the pump and then discuss other pain control options with this doctor. If Richard can get some sort of pain control then we can continue our search for another pain management doctor.

This is a risk and anyone who knows me, knows I am very risk-adverse. However, I know Richard would not make this choice if he was able to find some other way to get out of pain. The dye study itself won’t get him out of pain but it is the first step in that direction.

I’m sure everyone is shaking their heads and thinking we are crazy but this pain has to stop.

The quiet is starting to freak me out.

Co-Caregiving: Developing into a Team

My husband and I work pretty well as a team.

 

We first blended our families together (me with my daughter and him with his daughter and son) and raised these three kids the best we could.  They have all turned into productive citizens and wonderful human beings.  Not that their success is because of us but I’d like to think we at least didn’t fumble too much along the way.  It’s likely they won’t need a lifetime of therapy but maybe just a few helpful sessions.  I can’t ask for more than that.

Co-caregivers: Trish and Richard on vacation

Richard and I also worked together when his back pain became unbearable.  He was rear-ended on the freeway by a drunk driver before we met and he dealt with his injuries as well as horrible pain when his son was just a newborn and daughter a toddler.  By the time we met, his pain was manageable (or so it seemed). Shortly after we married, the pain increased considerably (I try not to correlate the two events).

We worked together to get him the right pain management doctor and the right treatment that worked for him and our family.  We went through some tough trials with the various medications he was on (a few which severely adversely affected his ability to get out of bed or be the least bit pleasant when he was out of bed). 

We (and I’m including the kids here because it was truly a team effort from all of us) plowed through and, eventually, found a terrific doctor who installed Richard’s intrathecal pain pump. The amount of medications he had to take was reduced significantly and, although his pain has not completely subsided, it is at a level he (and the rest of us) can live with.  

After seventeen years together (sixteen of those married), we have developed into a pretty good team but it hasn’t always been easy. Heck, I was ready to lock him out of the house plenty of times during the trial and error period with his medications and the kids would have thanked me!

There was a brief stint as co-caregivers during my mom’s illness before she died as well as during the death of my dad.  We have come to realize our co-caregiving experience is neither perfect nor idyllic but it does work for us and we have been able to smooth out the rough spots over the years. All of these experiences have prepared us for our next co-caregiving experience: caring for Robert and, to a lesser extent, Richard’s mom.

Richard was always on board with helping care for Robert when Robert could no longer live independently and, eventually, with bringing him into our home to care for him. We each had our concerns, however.

I worried that with Richard’s back problems, the extra work with Robert would be too much for him.  Robert sometimes ends up on the floor after a seizure and a big concern for me was Richard hurting his back when trying to help Robert get up. 

Richard’s concerns centered on the logistics of Robert being here. Would Robert be able to stay at his Day Program and will transportation be available for him? Will Robert be happy with the sleeping arrangements since we don’t have an extra bedroom downstairs and he has to sleep on the sofa sleeper?  Will there be back-up help if we need it? 

Our first step was to discuss these concerns and then we had to rely on each other for reassurance.  I needed Richard to convince me he would be honest about any increase in his back pain and I had to reassure him that I confirmed his program and transportation would stay the same and back-up care would be arranged.

We both had to rely on Robert to let us know if the sofa sleeper was satisfactory long-term since he already had adjusted to it for short-term visits.  We explained to Robert that he wouldn’t have a bedroom if he lived with us and he replied, “I know; it’s okay.”

We had our answer from Robert and our reassurance to each other which meant only one thing: the real work was about to begin.

In the next post I will talk about what works for us to make co-caregiving successful.  In the next few days, I’ll also discuss the pitfalls of co-caregiving and how to overcome those without too much heartache.

In the meantime, I invite you to tell us about your own co-caregiving experiences and what works (or doesn’t work) for you. 

Chronic Pain: My Turn to Listen

My proclivity toward kitchen fires started when I was quite young.  I was no more than ten years old and baking cookies (I’m going to bet they were chocolate chip but don’t recall for sure).   The house filled with the delicious smell only chocolate chips cookies can emit (and, I’m going to also bet, my younger brothers were clamoring nearby for their share once they finished baking).

Photo Credit: Lowes

When the timer told me the cookies were done, I used both a kitchen towel and an oven mitt (I assume my fear of getting burned from the hot rack led me to double up on the protection) and the kitchen towel somehow touched the oven coils at the bottom of the oven and caught fire. 

There was a lot of screaming (mostly me, although I’m betting mom did her share once she ran into the kitchen) but I somehow managed to get the towel in the sink and douse it with water before the house burned down. 

Thankfully, the cookies were unharmed.

Nothing soothes frazzled nerves better than some delicious chocolate chip cookies. 

Fast-forward through teen years, my twenties, thirties, forties . . . you get the idea.  I have had several kitchen mishaps (okay, small fires or smoke-alarm incidents) through the years. 

These incidents were so expected within my family that I my own mother bought me a fire-extinguisher for a birthday present one year. (My mom could be quite practical).

Happy birthday to me. 

I have not actually had to use the fire-extinguisher because these all-too-often incidents don’t get too out of hand but there was one time the fire department was called.  That one really wasn’t my fault though (I was using an apparently just-cleaned oven at an apartment I recently moved into and the apartment filled with a horrible smell.) 

So kitchen “mishaps” happen but the biggest casualties are usually an appliance (or two).  A toaster caught on fire and was ruined because of an exploding Pop-Tart (it happens – look it up!).  As a poor college student, I wrote to Kellogg’s and insisted they buy me a new toaster.  (I didn’t get a new toaster but I got coupons for free Pop-Tarts which helped my almost non-existent grocery budget.) 

The most recent kitchen “incident” was probably the worst so far and we lost a microwave because of it.  I was making dinner and using the microwave as a timer.  Or so I thought.  I accidentally started the microwave “cooking” instead of timing for twenty minutes. 

Not a horrible mistake unless there’s a plastic container of frosted sugar cookies stored in the microwave. 

Yikes. 

The house filled with smoke and the smell of burnt plastic was horrendous.  Plastic melted into the bottom of the microwave and, even though we were able to clean out the inside, the smell never went away. 

This time the cookies (nor the microwave) could be saved and I had no company to write to asking for replacements – this was all on me. 

My husband and I shopped for a microwave on our next date night (I’m obviously as practical as my mom was) and came home with a gorgeous stainless steel microwave. 

This was the best result of a kitchen fire ever!

While deciding on the microwave, my husband made the comment that we should pay for the install (of course, I had fried the above-the-stove microwave and not a cheap countertop microwave).   Richard was envisioning the lifting and drilling and more lifting.  I was envisioning saving a few dollars.  When the salesperson came over to assist, he assured Richard the install was easy. 

My husband has serious chronic back pain issues.  He is also inclined to do more than he should so when he says we should pay someone to install an appliance, I really should listen to him.  He does not say these things lightly. 

However, I wasn’t really thinking and we both were easily swayed by the salesperson’s insistence that the install would be easy.

Helping my husband lift the very heavy old microwave out of the cabinet and install a new, only slightly less heavy microwave, was enough to make me bang my hand against my head asking, “What was I thinking?!”

Richard was able to install the shiny new microwave but paid for it with increased back pain for the remainder of the day – and the next.

I have learned a few things from this experience:

1. Don't use the microwave as a timer (the risk is too great);
2. Listen to my husband (at least when it comes to his back pain);
3. Always, always save the cookies . . .
   
   
   

Chronic Pain Rears Its Ugly Head

Sand, meet ostrich.

Yep, I can be an ostrich when it comes to my husband’s chronic pain.

Dinner in Rome

Before I go any further, though, let me be clear about a few things:

1.       I love my husband;
2.       I had a fantastic vacation of a lifetime (of which I hope there are many more!);
3.       Husband (also known as Richard) has given his permission for me to discuss this;
4.       I’m going to be brutally open and honest;

I usually write about caring for Robert or about epilepsy or being a working caregiver.  Occasionally, I’ve mentioned Richard’s chronic pain. 

When we married fifteen years ago, we combined his daughter and son and my daughter into one unified family and the back pain came along for the ride.  Between surgeries, treatments, medications (some hits, some horrific misses), it has been a part of everything.

Almost from the get-go, Richard had to stop working, we filed bankruptcy, medication misses kept him from driving for a while (a real challenge with three active kids!) and, of course, he was in constant pain.

The intrathecal pump installed several years ago, in combination with prescription painkillers, has been a life-saver.  We are back on our feet financially, Richard is able to drive again and while his pain is constant it is more manageable.  We have settled into a routine where he knows when he pushes himself he allows himself a few days to recover. I’ve learned not to nag him about what he should or should not do (okay, okay, I said I’d be open and honest: I still occasionally shake my head at him when he’s doing something he shouldn’t). 

Coping with this for so many years and developing routines has allowed me to almost forget how we have made so many adjustments in our day to day life in order to manage his pain and keep it at a minimum.

I can be such an ostrich but it is a comforting place to be sometimes.

However, it was also my downfall on our Most Wonderful Vacation Ever (enjoy the gratuitous vacation photo). J

While I was madly preparing for our vacation by making sure Robert was well cared for and my absence from work was covered, preparation for a long, overseas trip with someone who has relentless, unforgiving, chronic pain consisted of a passing thought of “if Richard is tired or in pain, he will rest.”

Worst. Idea. Ever.

Some things we would do differently next time:

1.       Do not have three legs to an already long flight.  There were too many times we rushed to catch our next flight and too many opportunities for luggage to be lost.  Which it was.

2.       Ask for assistance!  We both thought running (or walking very fast) to the next gate was acceptable.  It isn’t.  Richard was already in pain from a long flight and one of us (probably me since I wasn’t in extreme pain and theoretically should have been thinking clearly), should have just asked the flight attendant to arrange to have a cart or wheelchair pick us up upon landing or sucked it up and made arrangements to make the next flight.  Oh, the benefit of hindsight!

3.       We will never, ever put Richard’s pain medication in our checked luggage.  Richard’s bag was lost for two full days once we made it into Rome and his minimal extra medication he had with him had already been taken to help alleviate the pain from the close to 24 hour flight.  The decision to put the medication in the checked bag was made innocently enough (Richard’s pump delays him through security already and he didn’t want additional delays because of medication).  Next time: it’s going in our carry-on just like my shoes did (you don’t think I’d risk losing my shoes, do you?).

A few things we did right (most, by accident):

1.       Since we were with our two daughters and one of their boyfriend’s, it was actually more economical to book a private tour at various destinations than if we had a group tour through the cruise ship (our vacation was both on land and by cruise).  This worked out because when Richard is in pain he is cranky, irritable, and not pleasant to be around and awful in crowds.  It was best we did the private tours since seeing the inside of an Italian jail for assault was not on our bucket list this trip.

2.       We relaxed.  Yes, there was the usual sight-seeing and rush to pack in as many activities as possible but there was also a lot of time to relax by drinking cappuccinos and enjoying gelato and the occasional daily glass of wine.  It took us several days of being told by Italians to “just relax” to realize how high-strung us Californian’s really are (who knew?).

3.       Richard took breaks.  Not as often as I think he should have but I have to give him credit that he at least did take breaks.  Our visit to Cannes (yes! That’s where the famous film festival is held!), was particularly difficult for him.  The kids were exploring the beaches ahead of us and Richard finally had to stop and sit.  We left the kids (I use that term loosely since they’re in their early twenties) to explore the beautiful seaside town and Richard and I took a more leisurely pace in our exploits.

Now that we’ve been back for a week or two, I can clearly see what we should have done differently to make Richard’s pain more manageable.  Of course, in the throes of his pain and the lashing out verbally at the nearest person (usually me), I was ready to never go on vacation again.  At least, not together. 

However, I really think with more preparation, more built-in relaxation times and a little less lost luggage, we can manage the pain better.  Whether we are traveling or going about our daily lives, unforeseen crap is going to happen.  The reality is that being in pain makes it extremely difficult to deal with that extra crap.  A person with chronic pain has zero extra reserves to deal with anything except their pain. 

As with so much in caregiving, preparation is critical. I won’t stick my head in the sand again, though, by being delusional and thinking the next time we travel will be all roses and sunshine and butterflies.  Both us of will have to prepare more and hope that Richard’s pain management will benefit from that preparation.

I’d love to write more about chronic pain in order to help others dealing with it.  If you have a story about chronic pain and how to manage it, please share in the comment section here. 

In the meantime, I need to test my theory about preparation helping with the pain and start planning our next Most Amazing Vacation Ever.

 

The Faces of Caregiving: Laura - Spinal Cord Injury

Imagine the joys of being three months pregnant (okay, leave out the morning sickness part). Imagine the thrill of expecting your first child with your husband of 20+ years.

Laura and her husband, Greg, were experiencing this immense joy when Greg was involved in a horrific motorcycle accident and left for dead.

The strength shown by Laura when this happened to her and she was thrust into the world of caregiving is nothing short of inspiring.

Laura not only tackled the challenge of caregiving but became a devoted mother and terrific advocate for emergency preparedness for the disabled.

Laura recently lost her husband but continues her advocacy work and was kind enough to answer a few questions.

Robert’s Sister:   Tell us about your caregiving situation.

Laura:  When I was three months pregnant my husband was in a hit/run road rage motorcycle accident. It seemed only natural to care for my friend, my husband at that time of 20 years. He had a T-5 Spinal Cord Injury leaving him as a tetraplegic (legs & one arm) with Syringomyelia, Autonomic Dysreflexia and Complex RegionalPain Syndrome. He recently went to "dance with the Lord" on July 1, 2012.

Robert’s Sister:  Tell us a little bit about the diseases/disorders your husband faced.

Laura:  He required 75% assistance throughout the day to transfer, use the restroom, retrieve things that had been dropped on the floor and had pain so severe that it can cause the entire upper body to spasm uncontrollably. We had to watch for lumps on the back which was a sign of spinal cord fluid back up. We also had to watch for signs of body shutdown which was (high x (blood sugar + temperature + blood pressure)) = body shutdown. He escaped it four times.

Robert’s Sister:  As a caregiver, what is the biggest obstacle you've had to face?

Laura:  Ignorance. From day one we were told we couldn't continue to be together, that we wouldn't survive, that it was too tough, that people with disabilities got everything (even financially) including accommodations in emergency management design (of which there weren't).

Robert’s Sister:  How did you overcome that obstacle?

Laura:  Those obstacles – don't listen to naysayers!  They also say that marriages don't survive major family changes within only a few years. Within six years we had a spinal cord injury, a baby and move from one state to another!  We also continued to smile!  But we fought our challenges by getting active in the community via emergency management, through politicians and through writing.

Robert’s Sister:  What organizations did you become involved with due to your caregiving situation?

Laura:  In Florida we were involved with Spinal Cord support groups, Center for Independent Living, and County Emergency Operation Committees. In Georgia, I became involved with the Gwinnett Emergency Preparedness Committee, a National Emergency Preparedness Committee for the National Center for Independent Living Centers, the Gwinnett Emergency Assistance Committee, wrote essays for two (soon to be 3) Caregiving.com books, blogged on Caregiving.com, worked with the local Independent Living Center, and gave presentations in both states mostly on emergency preparedness.

Robert’s Sister:  What motivated you to be involved and to want to share info or advocate?

Laura:  My husband and our daughter. I was very frustrated that people with his level of medical challenges were set aside and ignored in community plans and furthermore were not acknowledged as being able to participate in parenting. It was troublesome that the only way one could find out information needed for assistance programs was to already be "in the know" and that is pretty much impossible when there are no warnings as to when a life changing disability occurs.

Robert’s Sister:  What have you done as an advocate or to share information with others?

Laura:  I have written many times in Caregiving.com and submitted essays for them. I challenge people in emergency management design by participating in any community meeting that I can. I freely and as often as I can give presentations, interviews and am planning on writing a book about the last six years.

Robert’s Sister:  Is there anything else you want people to know?

Laura:  To fight for your beliefs, you must believe in your fights. To succeed you must get others to believe too! 

If I can simply get my foot in the door and cause someone to think about something I said, then I consider it a success. Because thinking leads to discussion, which leads to debate, which leads to calls for change, which brings change about. Change can't come without thinking about it first. People call me an expert. I'm not. I am just a tenacious student who thinks in terms of family first and challenges second.

Life is about choices. Good/bad; positive/negative and yes/no. But at the end of the day, what decision are you willing to lay your head on your pillow with?!

Robert’s Sister:  How can people contact you if they want to learn more about?  

Laura:  On Caregiving.com, look up The Roaring Mouse. On Facebook I can be found at www.facebook.com/Laura.George.3532 or www.facebook.com/GetReadyGwinnett. On Linked In via Laura George or via email at educateandadvocate@gmail.com. At www.getreadygwinett.org, you'll find a dedication to my husband there.

Robert’s Sister:  Many thanks to Laura for her time and continued advocacy work even after losing her husband.  I’m excited to see the change this dynamic woman will bring about!

Next, I am excited to turn the interviewing tables on Denise M. Brown, creator of Caregiving.com. Once a month, I join Denise on her internet radio show, Your Caregiving Journey, Table Talk to discuss working caregivers but this time, I get to interview Denise about her advocacy work for caregivers.

Another Caregiving Hat

Hubby goes in tomorrow for surgery to replace his intrathecal pain pump.

It’s also my birthday (let the singing begin)!

Hubby has been in pain since I met him (although I try not to take it personally).  Mere weeks after hubby’s son was born, Hubby was traveling back to his baby from working out of town when he was rear-ended by a drunk driver (the person who hit him was driving on a suspended license and it was his 4^th DUI). 

Hubby dealt with major injuries and spine pain and was on a lot of pain meds.  He was on quite a bit of pain medication but, over time, went off it and did his best to control the pain with over the counter pain medications because he didn’t like the stronger stuff. 

We met during this over-the-counter drug phase, we married, his pain increased (I tried not to take this personally). 

Hubby saw a pain specialist (and a chiropractor and an acupuncturist and massage therapists and whoever else might have been able to help relieve the pain).  The pain specialist said he had Degenerative Disk Disease caused from the accident.  The doctor tried all kinds of treatments (nerve blocks, stronger medications, physical therapy to name a few). 

Nothing brought him relief.  Hubby was debilitated by the pain and he could no longer work.  He was declared disabled, we took a financial nose-dive, hubby’s view of himself took a major nose-dive, depression enveloped his entire being. 

We had three kids under the age of nine, it was early in our marriage, our finances were a mess and hubby was in severe and chronic pain.

It was ugly.

Hubby tried all kinds of medications to bring him some relief from the relentless pain.  Some medications incapacitated him so completely, he was unable to drive or function as a father or husband (sheesh, he could barely get out of bed).

I should also mention his mood was, well, on the cranky side.   The kids and I all had to not take this personally.

The situation was unbearable for everyone and we had to come up with another solution.

The intrathecal pain pump gave us hope.  The pump promised less pain (never promising to rid Hubby of it completely but promising his life back) and it gave us hope that the strong narcotics hubby was on could be discontinued (or, at least, greatly reduced). 

Fentanyl is delivered from the pump through a catheter into the area in the lower spine causing the pain.  Because the medication is delivered directly into the spinal column, there are fewer side effects from the medication and Hubby is able to actually function without a foggy brain and have reduced pain.  He still takes medication to help control the residual pain but it is nothing like those early days of our marriage (or right after his accident). 

The pump is not a cure-all.  He still has reactions to the oral medications which can cause all sorts of physical and behavioral problems (for instance, he was on Neurontin for quite some time until it turned Hubby into an angry, out of control stranger and I told the doctor he could either live with Hubby himself or change the medication).

Hubby no longer takes Neurontin.

Thankfully, we’ve had a great stretch without behavior issues or depression.  Hubby still has pain but he knows how far he can push himself and when he needs to rest.  I’ve learned to stop telling him what he shouldn’t be doing because it will cause him more pain.  The changes we’ve both made have helped make us happier people and have kept us married for close to 15 years.

The pump runs on batteries so needs to be replaced every few years.  This will be his 3^rd pump (well, 4^th if you count the time the doctor accidentally installed it upside down – oops!).  The device needs to be replaced as soon as possible because it is showing signs of not working and the battery going out (giving Hubby either increased pain or withdrawal symptom s or both).

We found out just before Christmas that a cancellation came up on the doctor’s schedule for tomorrow so surgery has been scheduled.  Hubby feels terrible that he is having surgery on my birthday but I think Hubby having pain relief for a few more years is a pretty terrific present (although – shhh, don’t tell Hubby – it definitely gives me “you owe me” ammunition to use in the future if I ever need it!).

For the surgery, I plan to wear my Mickey Mouse ears from my 50^th birthday celebration in Disneyland last year which, for me, is just the perfect caregiving hat.