The Caregiver Burden

A well written post on the About A Nurse blog written from the perspective of the caregiver:

Friday Fiction #3: Drained

Too often, the caregiver is neglected, taken for granted. Whenever there is serious illness in one partner, at least two, if not more, lives are dislocated.

I would really like to hear from any caregivers out there. What is your reaction to this piece "Drained?" Which parts of it reflect what you think or feel or experience? How do you manage?

Grand Rounds is up at Shrink Rap

The Shrink Rap theme was the new iPhone. Very interesting to see how folks connected it to health.

Also - a blogger and author I admire greatly, Laurie Edwards at A Chronic Dose is having her book come out today. Life Disrupted is about being young and having a chronic illness. She has important and useful things to say about this topic. And check out this article about Laurie in the Boston Globe.

Hard Conversations, Part 2: Can You Help Me?

Gertrude Stein, the American author who spent most of her life in France and whose Parisian salon attracted avant garde-ists such as Matisse and Picasso, is reputed to have raised herself up on her death bed and said:

"What is the answer?" (silence as she lay back down and then raised herself up again) "In that case, what is the question?"

One of the hardest questions to ask is not, "What comes after death?" or "Is there sentient life on other planets?" or "Why don't men ever refill ice cube trays (imho)?" The hardest question to ask is, "Can you help me?"

For a person with a prolonged or chronic illness or disability, the question, "Can you help me?" often stands as a marker of a growing dependency on others for help with the tasks and responsibilities that this society too often identifies with worth.

Adults handle things. They take care of children, finances, home maintenance, and small dogs. Adults are the "go-to" people, not the "do for me" people. Adults who require help are assigned a seat in a second class car on the life train. And sometimes, especially on bad days, we believe that's where we belong.

Asking for help sets in motion a cascade of feelings and meanings. For some ill people, there can be a prolonged internal struggle between the voice of harsh denial that says, "Oh you can do the grocery shopping today (or the laundry or go to work). So what if you feel weak or in pain. Be a grown up." And the voice of sadness or shame that whispers, "I just can't."

How often are healthy people in situations where they have to confront their own limitations? Where they have to say out loud, "I can't do that." People with serious illness have do that many times a day. And each time requires an evaluation of one's abilities and possibilities, of one's place, even of one's identity. The question the ill person wrestles with is, "Am I to be defined by what I can't do, or by what I can?" Either way, the awareness of the possibility of falling short or failing to live up to some social standard infiltrates deeper into one's sense of identity each time this question is asked.

Notice too, how much our culture judges human value through measures of "doing" not "being." One's resume is about accomplishments not about character. At a social event, people say to each other, "So tell me what you do," not "Tell me what you think about." If your bio has been truncated by the limitations imposed by illness, how do you introduce yourself? Do you refer back to ten year old achievements? Do you mention your current illness? Or do you just avoid these events?

And if you need to depend on your intimate partner for help, on a regular basis, how can you prevent that from warping your relationship? How can you maintain a relationship of equals and thwart the slow side to a relationship of caretaker and patient? How can you keep asking the question, "Can you help me?" and still maintain a balance that keeps the relationship growing for both people?

I think the key is to not buy into the social norms that define asking for help as an admission of weakness and associate human value with doing and achieving. Within the boundaries of your intimate relationship you can define anything, any way you want.

Asking for help from your partner can carry a message of trust and intimacy. When you are willing to recognize your limitations and be vulnerable with someone you love, asking for help becomes an act of communion. It carries with it an expression of inner honesty and outer trust. And asking for help offers your partner an opportunity to actually do something. It can be a relief for the well partner to be able to actually undertake a task that can make the ill partner's life a bit easier.

The ill partner can, if he/she can shift from a "doing" to a "being" focus find many ways to rebalance the relationship. Perhaps the most important thing the ill partner can do is recognize the well partner -- see the caring contained within the help; recognize how hard it is for the well partner to be witness to his/her sweetie's daily struggles with pain or exhaustion; offer comfort.

Imagine the ill partner holding his/her sweetie's hand and saying, "You've had a hard time today. I know. Let's just sit together for a while and let me hold you." How much better is that kind of "being" than "doing" a mountain of laundry or making dinner?

How to Have the Hard Conversations

This is the first in a series of posts I plan on doing about "hard conversations."


Healthy people can fake it.

If your friends enthusiastically invite you to go bowling or play miniature golf or see a Jack Black movie - all three choices second only to a tooth extraction - you can choose to go and fake your way through having a good time. Health gives you an air pocket that allows you to keep breathing while in an unpleasant situation. And you can participate without having to think much or talk much about it. You can chose to go in an instant.

Illness doesn't offer such a cushion. Any invitation has to undergo a cost/benefit analysis. Will the advantages of participation outweigh the repercussions of the effort involved? Is today a good enough day so that you can afford to spend some extra energy points on activity without having to pay too high a cost tomorrow?

What if it's your partner who is doing the inviting? The complications start to trip over themselves.

You know your partner understands your pain or your tiredness better than any one, so he/she wouldn't be asking if it weren't important. You want to be able to give him/her that gift - the gift of one normal day, even one normal hour as a couple. How much could it hurt to go to a movie or eat in a restaurant or drive to the beach? You may even start to convince yourself that you can participate, without cost, in these low key social activities. How much could it hurt? You may force yourself to ignore the signals your body is giving you - that hint of pressure behind your eyes that could signal a migraine or the pain in your lower back that could lead to sciatica or the slight heat of a low grade fever that could leave you depleted. How much could it hurt to take your symptoms with you and sit in a movie theater for a couple of hours?

You wish, more than anything that you could just do it without having to inventory your body and hold this miserable internal debate -- "Can I?" "Why not?" "You know why not?" "But maybe..?" "You know better." "But it will mean so much to him/her." "You and he will both pay for this later." "Why can't I have just one day of normal!!!"

So, no matter what choice you make, you carry the taint of worry along with you. And, given that sneaky mind/body connection, that worry may possibly flip the switch on your stress and release those fight or flight chemicals that can exacerbate the symptoms you are most hoping to ignore.

You may not be able to alter your physical state, but you can alleviate the worry and give your partner a true gift. How? By having the hard conversation.

Chances are, what matters more to your partner than the movie or the restaurant is feeling a connection with you. Your partner so often has to share you with illness, that he/she may really be asking for some eye to eye, heart to heart synching. You can offer him/her this closeness, not by faking it or forcing it, but by telling the truth, with empathy.

Telling the truth with empathy. Sounds simple, but it is actually one of the hardest forms of communication. It requires that you be aware and honest with yourself and at the same time be aware and honest about your partner's experience. To hold both your and your sweetie's condition with truth and compassion. To not retreat into fear or rage or shame. To not pick a fight, distracting you both and shifting the feelings you don't want onto your partner.

What does a "telling the truth with empathy" conversation sound like? (the following dialogue really happened between me and Richard, once upon a pain-filled time)

She: "I love that you are inviting me to go to the movies. That you want us to have fun together and get out of this house. But I am already feeling (fill in the blank: pain, exhaustion, anxiety, etc.) today and am not sure I can make it through a movie."

He: "I do want to get us both out of the house and be distracted for a while from illness. I'm sorry today is already a difficult one for you. Do you think you can try going to a movie? We can always leave if it gets too uncomfortable for you."

She: "I hate to disappoint you. And me. I know how awful it is for you to see me with pain. And I really appreciate that you want to bring some lightness and fun into our day. I wish I felt well enough, but, and this is really hard to admit, I just don't want to be around people or sit still or have to pay attention to a movie for two hours. And I would feel worse if I tried and then had to leave in the middle."

He: "Well I am disappointed. I wish you were willing to try, but I understand that it just doesn't feel right today. Maybe tomorrow?"

She: "Maybe tomorrow. And today, why don't we sit in the back yard and read the paper together."

The Dance of Relationship: TED & Pilobolus

Many of you are familiar with the TED talks.

TED stands for Technology, Entertainment, Design. It started out (in 1984) as a conference bringing together people from those three worlds. Since then its scope has become ever broader.

The annual conference now brings together the world's most fascinating thinkers and doers, who are challenged to give the talk of their lives (in 18 minutes). Many of the talks are captured on video and posted on the TED website.

This extraordinary 14 minute video shows two dancers from the Pilobolus dance company, - entwined, apart, struggling, emerging. I found it so captivating that at some point I stopped thinking about what it might mean and just got wrapped up in the fluidity of their movements.

Others will have different interpretations, but for me, this dance is the dance of relationship, of a couple, or all couples, striving to balance separateness and merging, elation and suffering. This is an exquisite piece. I hope you enjoy it.

Grand Rounds at Happy Hospitalist

This week's medical Grand Rounds is up at Happy Hospitalist. I'm pleased my post about saying goodbye to my dear dog is included.

The Two Sides of Back Pain

I did too ambitious a plow pose in yoga class today, and heard my back make a suspicious popping sound. When I rolled out of the position, I couldn't sit up straight. Bent over like a crone with a cane, I inched my way to my car and made it home. I have been icing my back and crunching Advil for the last few hours.

My reaction to my body failing in any way is so convoluted since the peak days of suffering with a pain condition. On the one hand, I want to shout, "I've paid my dues. I earned a lifetime get-out-of-pain card. Pass me by and give that 20 year old in purple spandex a broken finger nail instead.

On the other hand, it's a bit delicious to have a normal person's ailment. Something with a known cause, a clear treatment, and most importantly, an end date. I'm seeing my chiropractor tomorrow and expect to be down-dogging again by the weekend.