September 18, 2011

A message from Dave…

...from the handicap stall.

Taking care of Theresa has been a blur the last few months.  Heart surgery, heart surgery complications, and many follow up appointments have kept us on the run. Theresa is doing better now and that is a blessing.  A lull in the Lupus storm.

I had to laugh at myself last week.  I realized I have three entries in my journal that start with “in the handicap stall at the moment…”  Spaced about a month apart each.  Notes during two hospital visits and one clinic visit.

This speaks to the crazy path of a caregiver.  Trying to juggle work and care giving and family time, with attempts at writing and photography on the side, make for odd locales and questionable best practices.

Some examples—seeking out handicap stalls for some space and me time; sleeping overnight in hospital family waiting rooms; leaving before the crack of dawn to make up work hours lost to ER runs; and serving the kids breakfast for supper too often.

I have gotten to know way too much about hospital protocol in the process.  I am pretty confident I could travel coast to coast now by overnighting it in hospital family waiting rooms.

Here’s the routine if you choose to go for it.  Get to the hospital of choice before visitors have to sign in for the night.  Find the neurology floor family room (quietest floor after 8pm).   At 9 pm, look beat and get warm blankets and linens from the kind nurse at the nurse’s station.  Make up the couch farthest from the door.  Sleep with a sheet over your head and nobody will bother you.

Fresh Sanka in the morning and off you go.

I can joke about this now.  Easy to do with Theresa between flares.  But it is hell on wheels when the going gets tough.  As you likely know if you’re in the same boat.

Theresa has an IVIG infusion tomorrow.  Tonight, though, we rest in our own bed together.  Good locale.  Best practice.  Inhale.  Exhale.

Psychology Today: Here to Help

                                                                      Kristin Neff is an Associate Professor   of Human Development and Culture at the University of Texas, Austin.

Self-compassion for caregivers

If you're a caregiver, you need self-compassion!

Think of all the generous, kind people you know who constantly give compassion and care to others, yet continually beat themselves up. Most of us are quite practiced at being supportive and giving to others, especially those of us who find ourselves in caregiver roles. Whether we have a special needs child, a parent with Alzheimer's, an ill partner, or are in a caregiving profession such as being a nurse, therapist, or teacher, we know to give support, comfort and compassion to the people who need us. But how many of us offer that same level of compassion and care to ourselves?

For some reason our culture tells us that this is the way we should be - women especially. But when caregivers continually give out to others without being kind, caring and supportive toward themselves, they'll eventually burn out. We need to have self-compassion in order to recharge our batteries and have the emotional energy needed to serve others. If we continually criticize ourselves, especially for the feeling that we're never doing enough, we'll become stressed and depressed, and eventually lash out in moments of frustration toward the people we care for.

For the past decade or so I've been conducting research on self-compassion, and have found that self-compassion is strongly related to mental health (see for more information). Self-compassion is also associated with healthy behaviors. It has been shown to help people quit smoking, stay on their diets, exercise, and seek medical care when needed. Moreover, self-compassion has been shown to protect caregivers from burnout and compassion fatigue, and to increase satisfaction with one's caregiving role.

But what is self-compassion exactly? Drawing on the writings of various Buddhist scholars, I have defined self-compassion as having 3 main components, self-kindness, common humanity, and mindfulness. Self-kindness refers to the tendency to be caring and understanding with oneself rather than being harshly critical or judgmental. Common humanity involves recognizing that all humans are imperfect, fail and make mistakes. Mindfulness involves being aware of one's painful feelings in a clear and balanced manner so that one neither ignores nor obsesses about disliked aspects of oneself or one's life. Self-compassion can be extended towards the self when suffering occurs through no fault of one's own - when the external circumstances of life are simply too painful or difficult to bear, or else when our suffering stems from one's own mistakes, failures or personal inadequacies.

Self-compassion is crucial for caregivers - not only because it helps us forgive ourselves for our inevitable mistakes - but also because it allows us to acknowledge and comfort ourselves for the difficulties of our caregiving role. As a mother of a child with autism, I can tell you what a lifesaver self-compassion was for me (you can learn about my journey with autism in the book and film The Horse Boy Because of the intense sensory issues experienced by autistic children, they are often prone to violent tantrums. When my son screamed and screamed because his nervous system was being overloaded and I couldn't figure out the cause, I would soothe myself with kindness. When my son lost it in the grocery school and strangers gave me nasty looks because they thought I wasn't disciplining my child properly, I'd give myself the compassion I wasn't receiving from others. In short, self-compassion helped me cope, and that put me in the balanced emotional mind state needed to deal skillfully with whatever new challenges confronted me.

If you're a caregiver, try giving yourself compassion the next time you make a mistake or feel challenged beyond your ability to cope. Not only will it help to get through difficult situations, it will lead to greaterhappiness and peace of mind.

My website has exercises and guided meditations, links to research articles, and a way to test your self-compassion levels. You can also learn more about self-compassion by reading my recently released book, "Self-Compassion: Stop Beating Yourself Up and Leave Insecurity Behind."

April 14, 2011

  A message from Dave…

A minute is an interesting thing.

A New York minute is city fast.  As Johnny Carson once said, it's the interval between a Manhattan traffic light turning green and the guy behind you honking his horn.

Just a minute always runs way over a minute.  Same for I’ll be there in a minute.

A book was written a few decades ago titled The One Minute Manager.  Followed shortly thereafter by a book titled The Fifty-nine Second Employee.

Then there is the hospital minute.

A hospital minute varies depending on which side of it you’re on.

As a patient waiting for pain meds it is excruciatingly long.  As a caregiver in the same time frame, same deal.  One you want to end with all you heart but never seems to.

As a patient when the pain meds kick in, the hospital minute is one you savor.  Hoping it never ends.  As a caregiver in the same time frame, it is when your brow finally unfurrows.

An emergency room minute has similar characteristics of the hospital minute although in a different setting.

An ER minute allows you to learn Spanish.  No Fumar for example means No Smoking.

It also allows you to realize that there are typically forty-nine holes in a ceiling tile, seven by seven.  That leads to another ER minute where you work on square roots in your head.

It is a good day when an ER minute does not lead to a hospital minute.  That was the case today with Theresa.  Her heart began racing with no let up after her IVIg treatment this afternoon.  She was wheeled to the ER for tests that proved no damage done.  Her heart settled down and we went home two hundred forty ER minutes later.

Now Theresa is asleep and breathing easy as I write.  A bedroom minute is a pleasant thing.

Sleep well my love.  You earned it today.
March 24, 2011

Hello again. Dave here.  I am writing this to my lovely wife Theresa to hopefully explain what I couldn’t put into words when I came home from work tonight. 

It is that time when our disability insurance provider requires Theresa and one or more of her doctor specialists to prove that Theresa remains incapable of working. 

Disability insurance providers guarantee continued income (“financial peace of mind”) when you are in dire straights health wise.  This is a blessing and a curse.

The blessing is in the income proceeds that our insurance provider provides to keep a roof over our head.  And we are thankful for that.  Truly so.  Many many people eventually go penniless in our situation without such help.  We are grateful for the provider’s help no doubt.

The curse is that Theresa has to regurgitate the details of this miserable thing called Lupus to the insurance provider to prove her chronic illness.  There are many dimensions to this that are exhausting and dehumanizing.

Read Theresa’s latest blog and you’ll know what chronic illness means.  Now picture yourself in her condition completing a ten-page form to convince the insurance provider that she’s still too sick to work.

This evening when I got home, Theresa was in a panic because of fear that her answers would be misinterpreted by some layperson and the provider would cancel everything.  She has five three inch thick binders documenting her overlapping autoimmune disorder diagnosis.  How that is properly conveyed in ten pages of questions is beyond me too.

One question from the provider asked if Theresa had a web site.  Well pretty obvious she does.  Websites and social networking are fast becoming a means for insurance providers to pry into your life and make judgments on your character and ability to work.

Surfing the net for more information, Theresa found some examples of individuals loosing their benefits because of what their Internet activity suggested.  And that lead to stories of insurance providers posting people across the street to watch your every move.  So your every move can be used against you.

Put that information on top of the inane exercise of proving her health to insurance bureaucrats and you have a terribly trying day.

I listened to Theresa relay all this and got panicky myself.  It is damn overwhelming.

However, the good thing about Theresa and me is that when the sky is falling, one or the other of us has the cool head and does not let “what ifs” send us over the emotional cliff to certain death and destruction.

Although it took a while, tonight my head is cool.  Theresa when you read this know this—your honesty on this blog and in the ten-pages you complete will tell your story.  I think the tragedy of people loosing their benefits, as you read on the net, are the exception not the rule.  Your integrity will carry us through.  I have no doubt.

My parting shot.  The dilemma we all face in long term disability is that we depend on for-profit businesses for our financial wellbeing, and that depends on our loved ones being sick enough according to for-profit business rules.  That is a downright creepy aspect of our daily lives.  Your loved one fears that on the rare occasions when she or he feels good, it will be captured by some stranger and fed to the home office and there goes the bread on the table.  Always under the magnifying glass.  Painful.

Is there a better way?  Wish I had an answer.

Well once again, who said you can’t roller skate in a buffalo herd?  Keep the rubber side down.


March 10,2011

I’m Dave Johnson, Theresa’s husband.  Theresa thought it would be helpful for me to speak here about my experiences as her primary caregiver regarding her Lupus.  I hadn’t really put a name to my role in her care until this writing.  So many people care just as deeply that primary care group is more appropriate—our children, our folks, our siblings, former coworkers, and all those whose lives she’s touched.

Semantics aside, I help Theresa to the best of my abilities in her care.  Her diagnosis is overlapping autoimmune disorders.  This means we deal with very difficult health problems that for weeks can mean relatively little and then suddenly mean a fast painful trip to the ER for a week in the hospital.

If you have a loved one in the same situation you've experienced this I’m sure.  Our role as primary caregiver has its ups and downs as painful, certainly in different ways, as those we care for.

So here on occasion I will write about my experiences to help me, and maybe you was well, comprehend this catchall of diseases tagged Lupus.  Knowing we are not alone can be a comfort that gets us beyond the immediate struggle, eh?

One week's worth of Theresa's medication.
I will lead off with medications.  Holy crap.  It is incredible the mix of medications needed to keep Theresa stable.  Besides IVIG every other week, Theresa takes these meds: Acetaminophen; Artificial Tears; Aspirin; Benadryl; Cetirizine; Ciprofloxacin; Clindamycin Phosphate; Cyclobenzaprine HCI; Dexamethasone SOLN; Dulcolax; Folic Acid; Gammagard; Hydrocortisone NA SUCC; Hydroxychloroquine Sulfate; Levothyroxine Sodium; Methotrexate; Metronidasole; Multi-Vitamin; Omega 3; Prednisone; Ranitidine; Restasis; Tetracycline HCI; Tretinoin; Valtrex

Absolutely Greek to me.  But the list is very important to keep current and at hand—for example when your loved one has a headache so severe she or he can’t speak to the ER doctor.  It falls to you for negotiations on treatment.  This is very trying.  Especially when you’re running on no sleep.

A current list of meds alleviates a lot of anxiety.  ER doctors have their preference of meds and their preferences vary.  A new med in the mix can be good or very troublesome.  Knowing the mix is the prerequisite to a better outcome.

Theresa has been at both extremes in the ER.  Her best experiences were when the ER doctors took time to know the current mix and introduced a new med with confidence that it would play OK in the mix.  To ensure this, always ask questions about side effects and do not take pat answers that all will be well.

That’s it from me for now.

Roger Miller sang that you can’t roller skate in a buffalo herd.  Well what’d he know?

Off to lace up our skates for another week.  Dave

Lupus Caregiving

There's a lot to think about and juggle when you're dealing with a chronic illness like lupus. As a caregiver for someone living with this disease, you can play a vital role in encouraging your loved one to properly manage his or her treatment, eat right, and take other necessary steps to control lupus symptoms.   To read further, click:

For Parents of Children Living with Lupus

Caring for a child with lupus is a great challenge for any family. After the diagnosis of lupus is made, the first step for every parent is to learn as much as possible about the disease and the special needs of a child with lupus. Parents must not only educate themselves, but they also need to educate their child with lupus and their other children plus their child’s teachers, and family friends. Thomas J.A. Lehman M.D., F.A.A.P., F.A.C.R., a member of the Lupus Foundation of America Medical-Scientific Advisory Council, has provided information on diagnosis, treatments and social and emotional issues that may be faced by a family with a child, teen or young adult diagnosed or living with lupus.

To read further, click below:  

Lupus Among Friends

A network of friends and neighbors can give the same kind of valuable support as family members: lending a helping hand with chores and errands, offering a sympathetic ear or a comforting shoulder. But in order to give support, friends need to have some understanding of the nature of lupus.

It is not necessary to share all of the details about lupus. But you will want to describe the possible symptoms of lupus and your symptoms in particular. Explain your treatments, as well as the fact that lupus can develop in men and women, teens, and children. Be ready to respond to questions and be careful not to react impatiently to sometimes inappropriate advice and comments. Let your friends know what to expect when the disease is active, such as last-minute cancellations, why usual activities might be scaled back, and side effects of prescribed medications.

To read further, click below:



Anonymous said...

I am glad to see finally resources and support for the people that care for us. Especailly husbands! There is not much places for them to go for this. THank you.

Anonymous said...

Thank you to you and your husband for sharing your experiences. Your words help us to get through our days.

Chris said...

Thank you so much Dave for the posting about the long term disability issue. I also have LTD through a private carrier and just went through my third social security appeal with an administrative law judge. The entire process is demoralizing.

I also worry that when I have a good day or two that someone is lurking right around the corner. I also write a blog and I never even considered that someone may be accessing that for information.

We have to live our lives though as much as we can, when we can....

Theresa said...
This comment has been removed by the author.
Theresa said...

From Dave: Chris, exactly. What is most important is to make the best out of every day like you say--as much as you can, when you can. That is the ongoing theme for those with Lupus. Well said. Live your life on your terms. Write frankly and honestly and don't hedge, for the best gift you can give to others is your story in your own words.

Anonymous said...

Dave, you are a most amazing person. I'm glad that my friendship with Theresa includes you. You're like the bonus! BOGO? And I mean that in the most heart-felt way! Planning to come over on Monday to spend some time with our girl. Hope you have an awesome weekend! *Jeana

Anonymous said...

I do not know you Dave, but from reading your words (which are always good to read)it is quite clear that you understand what we go through when watching our loved ones suffer. Unless you have been there no one knows how long those minutes can be. Being helpless is a horrible feeling and for me I don't always respond the best. Its good to know people like you.

Theresa said...

From Dave: You hit the nail right on the head. Being helpless IS a horrible feeling. Not responding the best I think is pretty normal when helpless has you at the end of your rope. Thank you for your words. It is good to know you too.

Anonymous said...

I have slept in a lot of hospital waiting rooms. It's difficult to leave the ones you love when they are hurting. For our family, being in the hospital means being away from our three small children. Never an easy decision. It's good to find the humor in all of this. We try to remember that every day. Thank you, Dave, for giving us both a smile.


Anonymous said...

Thank you so, so very much for posting about your experience as a caregiver to someone with lupus. I, too, am the primary caregiver to a person with lupus, and I'm scraping bottom these days. I'm online now looking for some thoughts and ideas about how others do this. We (yes we!) have been in a serious exacerbation of the illness for 3.5 years with no end in site.

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