MS Caregivers

Gail Sheehy's Labyrinth of Caregiving

Well-known social anthropoligist and author Gail Sheehy has been working on a book about caregiving.  (Disclaimer: I have spoken at length with Gail regarding this project)

In her book, Gail defines the 9 phases of caregiving:

• Shock & Mobilization
• New Normal
• Boomerang
• Playing God
• I Can't Do This Anymore
• Circle of Care
• Coming Back
• The Long Goodbye
• Afterlife of the Caregiver

You can read more about The Labyrinth of Caregiving here.

Be a Good Caregiver or a Bad Caregiver...but there's no middle ground

There are lots of areas of life where if you find that you aren't "good" at something you may actually find that you are "average" or "slightly above (or below) average".  But it occurs to me that caregiving does not fall into this category of life experience.  I can make the case that if you don't work at becoming a "good" caregiver, you will probably end up a "bad" caregiver. 

Being a caregiver carries a variety of responsibilities.  A caregiver's responsibility to the person they are caring for is to enhance their quality of life by providing those every day tasks that the patient can no longer manage for themselves.  Handling meal preparation, dispensing medications, getting to and from medical appointments, dressing and personal grooming may all be just a part of a caregiver's role.

A caregiver also has a responsibility to themselves.  This responsibility includes managing their own health and well-being.  It means not losing themselves by maintaining a life apart from their caregiving role.  It means remembering to "care for the caregiver" so that the caregiver does not face burnout.  And all of this is much easier said than done because of the sometimes emotionally and even physically overwhelming requirements of your role as caregiver.

Failure to master the role of "caregiver" opens the door to burnout.  Feeling overwhelmed frequently leads to caregiver depression.  It can lead to feeling unintentionally angry with the loved one you are caring for, taking shortcuts in providing care or even completely shutting down.  And all of these things do harm to both the caregiver's loved one and the caregiver themselves.

That's why it's so crucial to care for the caregiver.  If you forget yourself in this process, there's very little middle ground.  And then we end up with two people -- both you and your loved one -- who need caring for.  Taking care of yourself can be the most important step that you take in order to successfully take care of someone else.

Caregivers From Mars & Patients From Venus

We've all probably read, heard or talked about the social/gender phenomenon made famous in the book Men Are From Mars, Women Are From Venus.  But have you ever thought about how the Mars/Venus hypothesis applies to caregiving...and how this is an especially important aspect of caregiving within the MS community?

From the earliest age, women learn to build and rely upon their social network.  When a schoolgirl discovers that the little boy pulling her pigtails actually has a crush on her, she immediately shares the news with her girlfriends.  Her friends counsel her with sage advice and strategy for best dealing with the situation.  And so it goes...the schoolgirl matures but this particular behavior doesn't change.  Women are socialized to turn to their girlfriends in times of triumph and tragedy...to share their wins, fears and losses.

Men learn a somewhat different lesson.  Men are socialized to be the problem solver.  To shoulder responsibility.  To get 'er done...and asking for help is somehow equated with weakness and failure.

Successful caregivers learn that they can't succeed alone.  (The truth is that in any endeavor, no one really succeeds alone, but that's a topic for another blog).  Caregivers learn how important it is to reach out to their own social network.  To ask for help and to accept help and support with grace.  For women, it's something they've been doing all of their lives.  They merely apply what they already know to a new situation.  For men, it's often a whole new world.  It can be scary and intimidating.  But it can be learned.

The particular challenge within the MS community is that we know that MS targets women at a somewhat higher rate than men.  This means that a majority of MS caregivers are likely to be men.  But we also know that in the face of an MS diagnosis, male spouses frequently leave.  I haven't read any definitive reasons for the male exodus in the face of chronic illness, but I can't help but think that at least a partial reason lies in the fact that on Mars, men never learn the basics for communicating with and relying on their social network for help and support.  Perhaps some sort of outreach education could go a long way toward creating better Martian caregivers for our patients from Venus.

A Tale of 2 (VERY DIFFERENT!) Nurses' Aides -- PART 2

We live in an imperfect world.  And that can include nursing homes.  Yesterday's post introduced you to a professional caregiver who probably shouldn't be one.  Today's post is much easier for me to write -- it's about another of Jeanne's caregivers.  A CNA named Kia.  Jeanne has described Kia as, "an answer to my prayers."  And I have to second that opinion.

The CNAs at Hillcrest Care Center are tasked with keeping each patient comfortable.   Waking the patients, helping them with personal grooming & dressing, getting them showered and cleaned up, providing their meals (if they choose not to eat in the dining room) and making sure that everyone is "okay."  If someone isn't, the CNA escalates things to their Charge Nurse.

So if all CNAs do basically the same thing, how can someone like Kia stand out?  Easy -- it's all about attitude.  When I met Kia, she gave me her own "mission statement."  She said, "I try to take care of people just like I'd want my own family taken care of."  And Kia walks that talk every day.  She's there for the patients that she's responsible for...and she never seems too busy to stop and help any of the other patients, who are not her resonsibility, if they are in need of something.

Kia smiles.  She lights up the room, and in doing so, she lights up the lives of those patients who depend upon her.

Kia has amazing energy.  She's a whirlwind of motion and activity...but she's never too busy to share a story, a joke or some news about her own two boys.  Jeanne and I see Kia's family as an extension of our own family.  We're looking forward to her son's graduation next month.  I'm personally looking forward to trying her peach cobbler over Labor Day weekend (anticipating great cobbler should keep me smiling all summer long). 

Do you notice that none of this speaks directly to Kia's "nursing skills"?  It actually does -- because from my perspective, as Jeanne's advocate, I've found that the most important of all nursing skills is the ability to show compassion and to treat each patient with respect.  Kia cares.  And it shows.  And that alone makes Jeanne incredibly lucky to have found a friend like Kia, who also happens to be her CNA.

A Tale of 2 (VERY DIFFERENT!) Nurses' Aides

If you follow this blog then you've already read my praises of Hillcrest Care Center, the skilled nursing facility where Jeanne has been cared for since November, 2008.  By and large, the staff at Hillcrest is wonderful.  They have gone out of their way to create one of the few nursing homes in the country that specializes in working with MS patients. 

Since Jeanne's transfer to Hillcrest, I've seen my role in her life has transitioned from Jeanne's caregiver to Jeanne's advocate.  And I've found that my new role is an important one.  Over the next 2 days, I'd like to share two stories of two different CNAs (Certified Nurses' Aides) who I've come to know at Hillcrest.  One is named Flor.  Flor works the 3PM - 11PM shift, and has been at Hillcrest for 20 years.  I have no doubt that Flor was a dedicated caregiver when she began her career, but based on the things that I've observed and/or been told by Jeanne, Flor's best days are clearly behind her.  And that's troubling for her patients.

In the past couple of months, Jeanne has told me that Flor has been "rough" when she's turned Jeanne in her bed.  So rough, that at one point, Jeanne's catheter was apparently dislodged.  On other occasions, Jeanne has told me that when she's been moaning in pain, Flor's response has been to say, "Be quiet."  Hardly comforting and certainly not helpful.

Although I usually visit Jeanne early in the day, I made it a point to visit with her one evening so that I'd have the opportunity to discuss these issues with Flor.  Flor denied any rough treatment, and she told me that she certainly never told Jeanne to "be quiet."  At this point, I had already verified both instances with Jeanne's roommates, so I asked Flor if everyone was making these stories up.  She didn't know.  But I made it clear to Flor that if these things were true, they needed to stop.  And I hoped that would be the last of it.  However...

Last evening, I popped in to visit with Jeanne and to watch the Lakers - Nuggets NBA playoff game with her.  Jeanne is a big Laker fan...and an even bigger Pau Gasol fan!  During the game, Flor came in to take Jeanne's temperature.  Hillcrest is monitoring her temperature closely, as she's been hospitalized with infections 3 times in the past 90 days, most recently being discharged from her last hospital stay less than a week ago. 

As Flor was removing the thermometer, I noticed that the "probe" end of the thermometer had not been covered with a disposable sheath, as is the normal practice.  In disbelief, I stopped Flor in mid-motion and asked her about this.  She told me that she had run out of sheaths.  And although, there were boxes of these sheaths just 15 yards down the hall, Flor apparently didn't bother getting her supply re-filled.  Instead, she was using (and I can only assume re-using) the thermometer with no thought of protecting her patients. 

I went ballistic.  After all, we were in a nursing home -- with other sick patients!  And Jeanne had already proven to be susceptible to infection!  And to see that Flor's actions weren't out of ignorance but laziness...it just sent me over the edge.  Before I left Hillcrest last night, the Charge Nurse had already taken Jeanne off Flor's assignment list.  But my concern is for the next patient that Flor treats with the same lack of caring.  And if that patient doesn't have an advocate who happens to be sitting right there at the right time, then what? 

This may be Flor's first transgression.  But based upon some of the other less dangerous issues we've already faced with her, I doubt it.  I just think that her effectiveness as a caregiver has run its course.  It's time for her to find something else to do that poses less of a threat to others and less of a liability to herself and her employer.

Are all CNAs like Flor?  Absolutely not.  Hillcrest boasts a roster of wonderful, caring and competent CNAs who forge close and personal relationships with the patients that they care for.  But one bad apple can create a lot of harm in a facility like Hillcrest.  It ought not be allowed to happen.

Now remember, this is only PART 1 of a Tale of 2 CNAs.  Tomorrow, in PART 2, I'm going to tell you all about Kia.  A CNA whom Jeanne thinks of as an angel and I think of as part of our family.  The very best part of our family.

Caregivers on HBO

We all know that Alzheimer's is different from Parkinsons, which is different from MS.  But despite the differences in how these neurological diseases affect their victims, the role of being a caregiver to someone with a chronic progressive illness is pretty much the same.  That's one of the take-aways you will get if you choose to watch the Caregivers segment of HBO's mini-series, The Alzheimer's Project.

The 48-minute episode profiles 5 caregivers caring for Alzheimer's patients at 5 different stages of their disease.  If you are a caregiver, I'm confident you will find lots of "me too" moments as you watch.

If you don't have access to HBO, you can stream this episode on the web by clicking here.

Jon & Jeanne's Excellent Hospital Adventure

First, apologies for my being "Missing In Action" for all of these weeks.  Jeanne has contracted a couple of additional urinary tract infections (UTI's)...one requiring hospitalization again...and it's all definitely kept us on our toes.  Why the increase in UTI's?  Apparently it's a consequence of having a foley catheter.  But I've recently heard about a prescprition medication, Uroquid Acid No. 2, that has a very strong track record for keeping UTI activity low among people with catheters.  I'll be speaking to Jeanne's doctor today to see if this is a possible course of treatment for her.

I also owe another big thank you to the staff at Hillcrest Care Center.  As Jeanne first became symptomatic with another UTI, they quickly took proactive action to insure that she recerived appropriate treatment at Long Beach Memorial Medical Center before the infection had a chance to seriously compromise her.  As a result, it was a pleasantly uneventful hospital stay.  Except for the shooting. 

If you live in Southern California, you may recall hearing about the Long Beach Memorial employee who brought a gun to the hospital and proceeded to shoot his boss, his boss's boss and himself.  I thought that Jeanne and I had already experienced almost every situation one can imagine taking place in a hospital.  But I was wrong.  We had yet to experience being in the hospital during a total security lockdown.

Doors on every floor of the hospital swung shut and locked automatically.  Announcements came over the public address system.  "Code triage.  All available social workers, please report to the ER immediately."  Police brandishing automatic weapons...helicopters overhead...announcements on the local TV news not to even try to get into the hospital...we saw it all.  But the hospital staff maintained their cool and continued to provide excellent care for the patients.  Once again, hats off to the 5th floor nurses who did a great job of caring for Jeanne...even under these bizarre circumstances.

With Jeanne back at Hillcrest, I have my fingers crossed that we can look forward to less eventful days.  I'll be sure to keep you posted.

"Are you coming in?"

The nurse from the Intensive Care Unit called me at 2:00AM to tell me that Jeanne's blood pressure was falling dangerously low.  He defined her status as "more critical."  And then he calmly asked the question, "Are you coming in?". 

"Should I be there now?" I replied, already knowing that I was headed to the hospital but hoping to gain a bit more information about Jeanne's condition by asking the question.

"That would be great," he said.  No more information to give out...just a re-statement of his original invitation.  And so I was out of bed and off to the hospital, wondering if this would be the last bit of time that I spent with my wife.  Now knowing exactly how "that phone call" sounded.

As I drove to the hospital, I thought about how differently my day had started.  I arrived mid-morning at Hillcrest Care Center for my daily visit with Jeanne.  As I parked, I saw that the Long Beach Fire Department Paramedics were parked in front of the facility.  Rather than worry, I reminded myself that lots of people were at Hillcrest and the odds were high that this had nothing to do with Jeanne.  Besides, I had seen her yesterday and she seemed fatigued but otherwise fine.

As I turned down the hallway that led to Jeanne's room, I noticed that the paramedics had left a couple of their cases in the hall not far from Jeanne's room -- but the cases were close to several rooms.  And then I walked into Jeanne's room -- just in time to see her placed on a gurney, completely non-responsive.

Jeanne was taken to Long Beach Memorial Hospital.  From the Emergency Room, she was admitted to the Intensive Care Unit diagnosed with a urinary tract infection that had become septic.  Sepsis resulted in her "altered mental state", as her condition was characterized. 

Walking into ICU at 2:25AM, I found Jeanne to be in the same state as when I had left her at the end of visiting hours.  She was completely non-responsive, although her pulse was not as rapid as it had been.  Fortunately, by the time that I arrived her blood pressure had been brought under control by medication.  Her nurse let me stay for a few minutes, but then sent me back home, as the "urgency" of the situation had already resolved itself.

Jeanne opened her eyes two days later.  She was communicative later that same day.  And, thanks to excellent care and powerful antibiotics, she continued to improve.  Within 5 days, she left Intensive Care and was re-located to a room on a "General Medicine" floor of the hospital.  Three days later, she was discharged back to Hillcrest in better health than I had seen her enjoy in months.

Jeanne is still receiving IV antibiotics at Hillcrest.  Her infection was resistant to most antibiotics, and she was fortunate that her doctors were able to find a treatment that was effective for her.  But she's more talkative, more aware and more "present" than she's been in a very long time.  It's truly been a blessing to see her smile each day.

This is probably one of the most difficult aspects of being a caregiver.  Sometimes, there just isn't anything for you to do except to be supportive and show strength -- even when you feel as if you lack it.  Standing by while the love of your life hovers barely above death is an excruciating experience that I lack the words to truly describe.  All that I can say is that the joy in seeing that special person survive once again is an equally indescribable feeling.

This post would not be complete if I didn't add a special word about the quality of care that Jeanne received from the doctors and nurses at Long Beach Memorial.  Over the years, we've had the opportunity to experience treatment from several different hospitals, some with global reputations.  From my perspective, the care that Jeanne received at Long Beach Memorial was the very best care that she has ever received. I will always be indebted to the team that provided treatment, but also delivered a sense of real caring.  And I will take every opportunity to sing their praises.

Nursing Home = Better Care???!!

Since Jeanne's transition to a nursing home, I visit her every day.  I've gotten to know most of the staff and they've made it their business to get to know me.  Arriving one day, one of Jeanne's nurses greeted me with an update -- her labs had shown that she was dealing with an infection.  This prompted a call to the doctor and a prescription for antibiotics followed.  Within a couple of hours, Jeanne was already receiving the antibiotics and the infection disappeared within a few short days.

I couldn't help but compare this rush of events with what would have transpired if Jeanne were still being cared for at home.  To begin with, I wasn't set up to draw blood and process lab work at home.  So Jeanne's infection would have simply progressed until it created enough symptoms to get my attention.  This would be followed by a trip to the Emergency Room (and Jeanne needs to be transported by ambulance, so that's no easy -- or cheap -- feat).  Following hours and hours of waiting for treatment in the ER, Jeanne would typically be admitted to the hospital because, by this point, the infection would have become a significant threat to her health.  (This isn't speculation -- this exact scenario has happened to us twice in the past two years!)

And so, very quickly, I was able to see for myself that Jeanne would actually be receiving a higher level of care at Hillcrest Care Center than she would have received at home.  Knowing this has made Jeanne's transition to a nursing home much easier for me to live with.  And since this singular episode, I've witnessed several other scenarios that drove me to the exact same conclusion -- that, given her condition, Jeanne is in the best possible place.  And that''s all a devoted caregiver could ever wish for.

Finding Jeanne's Nursing Home

Once I realized that Jeanne's next stop would be a skilled nursing facility, I wanted to be sure that I selected the right facility.  My first stop was the local office of the Southern California Chapter of the National Multiple Sclerosis Society.  There, I learned about Hillcrest Care Center -- a skilled nursing facility in Long Beach, less than 30 minutes from our home, that specialized in dealing with MS patients.  It was sobering to realize that only one facility in all of Southern California specialized in working with folks with MS -- but I felt lucky that this particular place was so close to home.

I contacted Brad DeHaan, the Executive Director of Hillcrest, and arranged a meeting at the facility itself.  At our meeting, Brad explained all of the programs that Hillcrest has established (many in partnership with the MS Society) specifically for its MS population.  Unfortunately, I knew that Jeanne's physical status would prevent her from participating in most of these programs, but I felt that just having a staff that was used to working with MS patients was going to be a real plus in providing Jeanne with the highest quality of care.

After Brad ran through the programs that Hillcrest offers its MS patients, he took me on a tour of the facility.  As we came across several residents, he introduced me.  After our tour, Brad invited me to wander back on my own through some of the areas that we had visited and speak directly with any of the residents.  So far, my visit to Hillcrest had gone pretty much "by the numbers."  But this was completely unexpected...a nursing home director inviting me to pose my questions to any of the residents without any staff personnel around us.  This was transparency!

Less than a week after my visit, Jeanne was discharged from the hospital and arrived at Hillcrest Care Center.  She's now been there for approximately 2 months.  It hasn't been perfect -- there aren't any "perfect" situations.  But I can confidently state that I am certain that she's receiving a higher level of care than I could provide for her at home.  And that's the whole point, right? 

The transition has been difficult for both of us.  For me, our home is now too big and too quiet.  I've made it a point to visit Jeanne every day, and that helps.  And I've come to see my role as her caregiver transition to a role as Jeanne's advocate.  More about these changes as we move forward in this next phase of my life with Jeanne.