Caregiver.com

For About and By Caregivers
 
Any Dream Will Do

By   Linda Albert  

 

A year ago, my husband was contemplating a surgery that would involve the implanting of a tiny electrode in his brain.  If successful, it would mitigate against his Parkinsonís symptoms, allow him to take less medicine, lessen his side effects and give him more independence and quality of life.  The surgery took place on September 26th and for 10 amazing days he seemed like a new man.  And then, in a flash, his colon decided to twist and everything fell apart.  First the brain surgery.  Then colon surgery.  Followed by hernia surgery.  And finally, three months ago, total hip replacement surgery, all in less than nine monthsí time.

All this week, I have found myself singing a line from Joseph and the Amazing Technicolor Dreamcoat in my mind.  ďA something of something, a flash of light, my golden coat flew out of sight.  The world is plunged in darkness.  I am all alone.Ē  It drives me crazy that I canít remember the words to the two ďsomethings.Ē  A clash of drums, maybe.  But do drums actually clash? Cymbals yes. But drums?  Iím close, I think, but I donít quite have it.  It canít be thunder because the beat would be off.  I search frantically through my CDs and tapes, sure I have the show among my belongings, but itís not there.  And did the world turn dark or did it more dramatically plunge?

Itís as though, if I can get the precise lyrics, I will be able to solve the mystery of this particular musical message and why it wonít stop singing in my head. I throw myself upon the mercy of Google and am able to find a site with lyrics, but only the first two lines of each song are played as a tease to the listener who will then be compelled to buy the CD.  I am too impatient and penurious to wait before starting to write.  At least Iím reminded that the song is entitled ďAny Dream Will Do,Ē and that the lining of the coat of many colors, according to the Andrew Lloyd Weber version, is silver.  I donít know if I ever focused on that before, even though I had the happy experience of being the stage director for two productions of ďJosephĒ in my distant past and think I should be familiar with the details.

Without an answer, I try to write a poem instead about the turtle excavation last Friday night to which I brought my daughter and 10-year-old grandson who were visiting from Boston.  I am struck by the woman dressed entirely in white who dons the same kind of rubber gloves worn by the nurses in the hospital and the paid caregivers at home when they tend to my husbandís bodily functions.  From my perspective, she is surprisingly heedless of the knees of her white pants when she kneels on the beach; yet, like a surgical nurse, she carefully lays out, in lines she has drawn in the sand, the 80 rubbery, ping-pong ball sized unfertilized eggs and 15 hatched shells the male volunteer brings up from the nest.  It is a disappointing night and very unusual.  There are no live baby turtles in need of rescue down at the bottom.  And usually the numbers would be reversed: 80 hatched who have hopefully made it into the sea, though many would have been eaten already by predators (such are the odds of turtle survival) and 15 unfertilized.

I think my poem might be interesting if I can round it out by telling how when I return home to relieve the caregiver, there is no crowd of fascinated observers encircling us, no group of volunteers passionate to save us, and when my husband needs help in the bathroom, it seems pointless to use gloves.  ďI do not use the glovesĒ would be a wonderful last line for my poem; Iím convinced of it, but Iím not clear about what to say before that, so the poem turns out as barren as the turtle nest and never gets out of the hole it is in, much less into the creative ocean or off the mundane ground.

So now I have resorted to stream of consciousness in order to see if thereís anything I might yet learn.  It occurs to me my unconscious is trying to tell me I am currently standing on the stage of my life without a Dreamcoat.  ďA something of something, a flash of light, that golden coat flew out of sight.  The world has turned to darkness.  I am all alone.Ē  That might be a little melodramatic; Iím pretty sure Iím not in a full-fledged depression, but somehow there is a relationship to this song and the way my emotional life now stands.

My husband is recuperating well.  His surgeon says he is ahead of schedule in his healing.  Though walking laboriously because of his 22 years with Parkinsonís, and unable to be on his own, he is once again able to walk with a walker much of the time, after having been confined full time to a wheelchair for two months before the hip replacement.  We have loving and helpful children, caring friends and, when needed, professional help. We live in an apartment with beautiful views.  There is a lot for which to be grateful.  I know this.  But life has gotten narrower and more confining.  My husband is frustrated and sometimes angry that he is not more independent; I am more impatient. 

In writing this, I realize I am currently without a dream.  This is a painful realization.  The illusion of control I had in regard to my husbandís Parkinsonís disease has disappeared.  And, worst of all, the sense of mutual purpose and harmony of interests we enjoyed together during our Florida retirement seems, in larger part than I wish, to have slipped away as well.  I hope this is temporary, but how can I know? Our sense of hope and optimism is harder to come by some days; that silver lining is harder to find.

While Iím not ready to give up, the realities are clear.  We are in a new phase of life, and new challenges await us: how to accept and cope with the growing demands of a progressive illness with all its attendant emotional complexity and confusion; how to find the necessary balance between giving care and providing safety while continuing to respect my husbandís obvious need for autonomy; how to find interests we can still enjoy together despite new limitations and changing needs on both our parts, and, finally, how to discover and manage an independent life for myself away from illness and responsibility without feeling guilty that in doing so I am abandoning my husband and leaving him behind.

ďThe world and I we are still waiting. Anticipating. Any dream will do. Bring back that colored coat, that amazing colored coat. Bring back that colored coat. That amazing colored coat.Ē

 Subscribe to our weekly e-newsletter