Monday, January 4, 2016

Who is the Patient and Who is the Caregiver?

I just read (another) story, this time in the Boston Globe, about a couple falling in love, starting down the path toward a rosy future, then finding the lump.  You know the lump I mean.  It can be cancer, multiple sclerosis, a traumatic brain injury, Alzheimer's, a stroke, pain.  Anything can qualify as a lump as long as it's a serious health condition that derails that rosy, idealized future.  An unassailable breach between what was and what will be.  A one way ticket to what Susan Sontag called "the kingdom of the sick."

In this story, he stuck by her side as they tried to achieve normal for as long as possible.  It wasn't too long a journey.  And that is both a blessing and a curse.  A blessing because they could love and hold onto each other without suffering the exhaustion and dullness long term care forces on patient and caregiver.  A curse, because they lost too quickly the future they never were going to have a chance to have,  and the loving kindness they really did have.

One line in the article struck me hard:
"Those outside of relationships in which a serious illness is present sometimes want a simple story:  the patient and the saint."

I think we need to redefine these terms.  Is the patient the person in whose body the illness resides?  Or is the patient the relationship itself which gets unravelled and requires continuous monitoring and re-ravelling?  Or is the caregiver also a patient, someone who is an equal-but-different victim of the invading disease?  And doesn't each partner, to the extent he/she can, try to provide some caregiving to the other?  Even it it's in the form of a smile or an expression of gratitude.  We need to remember that while the disease lives in one person's body, it is two lives that get disrupted, and two whole beings who suffer.

The patient suffers a terrible identity loss, along with the pain and physical demands of the illness.  The caregiver suffers an existential loss (that is, her existence as she knew it is gone), along with a level of physical and emotional depletion no one on the outside can imagine.  The caregiver also suffers the additional anguish of being unable to make the patient well again.  I've lived in both shoes, and I can tell you, I'd rather be the patient.

So, let's not make it easy for outsiders who want that simple story of patient and saint.  When they ask, "How are you doing?"  Tell them the truth.  Tell them that this is not the life you expected.  That it is harder than words can express.  That sometimes you wish the final curtain would drop already. That other times you feel such love and intimacy with your partner -- a level of connectedness that would not have been achieved had it not been for the pressure of the illness.  And then thank them for their concern.


withduh said...

I'm losing my husband to Alzheimer's. We have been married 40 yrs. He has now been in a care home for 2 yrs. I am also my Mother's caregiver. I have been caring for her to about 6 yrs. She does not have long left. I have worked all my life and taken care of my family. with this sickness I am left bankrupted, money worries are constant. I'm lost do not know where to turn. I have been doing housework to supplement my income but now I can not leave my Mother alone for more than an hour. I have home health that comes in to help 3 times a day, but they only stay long enough to change her pull up and maybe help her bath twice a week. there only here most times 20 minutes or so. I appreciate their time, but I still to be here and can not work. My heart is broken over my husband, and it breaks my heart to see my mother decline. I'm tired. And I am sick of people telling me to go see this agency for help or that agency. They never pan out and I'm just tired.

Barbara Kivowitz said...

Thanks for sharing your story withduh. Clearly you have been carrying the heavy load of the caregiver for a long time, with two people who are very close to you. Sometimes caregivers get so weighed down with the physical tasks, the emotional strain, and the financial anxieties that it seems like all the oxygen has been sucked out of the air. What remains is a profound tiredness.

I hear that you have not had the kind of help you were hoping for. That too is too often the case. I do urge you to consider two things, as hard as this might be. The first is to find ways of paying yourself back - of giving to yourself - in whatever ways you might find some comforting. The second is not to give up on finding help, support. Just because one agency couldn't help does not mean that another agency will be the same. If you haven't called them yet, one place to seek help could be your local Area Agency on Aging (you can find the one that serves your area on the internet, or by calling your local town hall).

I hope your road gets a little softer.