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Tuesday, May 10, 2011


One of the biggest challenges of this job of full time caregiving is staying balanced and content. The constant repetitions of each day, the isolation, the stress of being on high alert at all times take their toll. On the whole, I manage the balance fairly well and can actually report that most days I am content, even happy.

But there are days when life overwhelms, not often but occasionally. The meltdowns are usually short-lived for me, thank goodness,  and cathartic, allowing me to press my reset button and face the monotony again.  Or a simple call from a friend or family member is enough to jolt me out of my morass for a few more days.

Recently, though, a connection of another sort occurred that has gotten under my skin and is chafing. Long lost unrequited relationships sometimes surface that trigger memories and longings that I have mostly been successful in suppressing. But this one has uncovered feelings and yearnings I have kept well hidden over the past few years of intensive caregiving.

I have always described myself as a person without definite passions.  I've often thought that perhaps I suffer from anhedonia . But that is defined as a mental disorder, one where the sufferer no longer finds pleasure in previously enjoyed activities, not what I am.  No, I take simple pleasure from simple things: a prayerful walk in the forest alone save the company of my dogs; watching my garden spring forth every year; my children; my friends; my volunteer work. I have, of course, loved my husband, sometimes very passionately, and still do, though the passion is sadly long gone.   Something must die when a spouse must cross that line from lover to nurse (despite male fantasies to the contrary), and, with a chronic, severe degenerative disease like PD/dementia, there is no turning back, at least, not for me. Sometimes I think I am better suited than most for this job because I do lack passion for many of those external things like hobbies and causes. I don't feel I am missing much and on the whole I am a contented homebody.

I am not ready to give up my job as caregiver, as onerous as it is, but I am realizing that a life without passion is a sad one.  I wish I could abandon myself in a hobby that might fulfill me if I only had the freedom for such things.  But there is still this chafing yearning that will not go away, a reminder that I am, after all, human with all my physical needs calling out to be met.  A cruel joke that is keeping me awake at night. A spiritual life is helpful but only an occasional panacea.

My solution is to engage in time travel and fantasy. In the case of time travel, I am able to lose myself in memories of my husband in better times, when he was well, fit and amorous. It is a useful strategy and gets me through lonely times just imagining his comforting, protective arm around me in the night. But I am now the Protector so the illusion quickly vanishes, leaving only the yearning. It is merely a ghost of the past.

Fantasy, on the other hand, offers the promise of future, though a rather hollow promise at that.  It works for a while but, again, is only an illusion that vanishes perhaps even more quickly than the other because there is no past memory to fuel it. It is a chimera. It is less satisfying, perhaps even destructive, because it does leave the longing with nothing tangible in its wake. The time travel indulgence at least still has all the fine material products of that relationship before me as a reminder that it was real.


  1. This is finely written description of your feelings on a very personal topic. As a reader of your blog and a man facing the prospect of being a care partner to a wife in the early stages of PD, I appreciated your frankness. Writing it probably helped you, and it just might help others, too. Thanks

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  3. Yes, the honesty does shine through. And written with such a delicate touch. Thanks again for sharing it.

    I too find writing about my PD care partner experience (even though I am only in the early stages) to be cathartic. I write mostly for myself -- so far only written short pieces and poetry. See