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An important part of learning to live with a disability is determining for oneself what limitations one's condition imposes, and how to adapt to those changed circumstances.  Occupational Therapy can be of enormous assistance, but as in all disciplines, the expertise, skills and, yes, prejudices of individual practitioners can vary wildly.  I have had some who pushed me beyond my limits, and others who tried to convince me that a particular goal was unrealistic.  Others could not appreciate my personal priorities because they were at such variance from their own.  Ultimately, it fell upon me to find the right balance for me between the cost and benefit of particular activities, and to define for myself what constituted a full, meaningful and productive life despite my limitations, some profound and some subtle.  I also had to decide what level of pain was an acceptable price to pay for some things in my life I was unable or unwilling to give up.  And as one's condition progresses, further adjustments must be made and some decisions reevaluated.  It's a process of frequent adaptation, sometimes "on the fly" which includes a good deal of trial and error, and necessarily a good measure of both success and failure.

All of that is fine and dandy in the abstract.  Real life, however, does not come at us in a logical or carefully measured manner.  We are often confronted with situations which fall outside the boundaries of even the most carefully crafted personal priority system.  Prevalent among these are family responsibilities, as spouses, parents, or, as in my case and that of many of my contemporaries, as children of aging parents.

For the past several years, in addition to dealing with managing my own condition and rehabilitation, I have been primary family caregiver for my 92-year-old Mother.  I have made some major mistakes in that role, but experienced a level of emotional intimacy with a parent previously unknown to me.  I hope sharing some of the high and low points will be of some use to others, and perhaps prompt some discussion of others' experiences.

KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic.  There are two parts to each diary.  First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.

The Background

From early adolescence on, my parents and I had a series of battles on our hands.  I'll spare you the details, some of which are pretty horrific.  Suffice it to say that they didn't approve of my friends, my politics, my religion, and when I decided to come out of the closet in our small town, they didn't know whether to be humiliated or enraged, and so settled on a little of each.  Ultimately this led to complete estrangement.  At the time of my father's death in 1989, I had not had any contact with them whatsoever for over a decade.

A few years later, I initiated contact again, first with my siblings, and then my mother.  It, of course, was a bit furtive at first, and largely kept superficial.  There were subjects we carefully avoided even broaching, which, necessarily included many which were the most important to me.  But, it was a start.  I took time off a couple of times to fly out for a visit.  It was good, but not great, largely because of the tedious atmosphere, and I remained pretty glad that we lived on separate coasts.

Then, about six years ago, I needed to take an extended leave of absence to undergo a lengthy course of physical therapy and outpatient rehab.  I decided to do so in my hometown.  Mother had reached a stage in life where having a family member close enough to look in on her was a good thing, I thought it would be good for the renewal of our relationship, and I could use the support of family and friends myself.  Wins all around.  And, it was working out pretty well until I had a couple of heart attacks.  That changed the game.  Then my osteoporosis symptoms worsened, and I began developing peripheral neuropathy.  Pain management became more difficult.  I was having to readjust my lifestyle radically, and give up activities that were dear to me.  I had to extend my leave of absence indefinitely.  I missed my work terribly.

Another year went by.  I was learning to compensate for some of my new limitations, my pain was being better managed, as were my cardiac symptoms.  I took on a part-time position as an administrator for a consortium of church-related colleges and seminaries -- desk jockeying wasn't my first choice of vocations, but it was getting a toe back into the ministerial waters.  I was starting to plan for the future again.

Duty Calls

During the course of my own recovery -- to the extent one can call treatment to slow the effects of a progressive and irreversible disease process "recovery" -- my mother was requiring more and more attention and care.  She was increasingly evidencing transient ischemic attack activity resulting in memory lapses, falls, fender benders, and even short periods of incoherence.  The family (myself included), and even her medical professionals, failed to recognize the significance, partly because onset was gradual, as was the acceleration of episode frequency.

She was missing doses of medications too often, and forgetting to get some prescriptions refilled.  I took over her med management, putting up her pills for her into a dose box weekly, and making sure that she didn't run out of anything or forget she was on a particular medication altogether, and go off of it by default.  She still would forget to take a dose a few times each week.

Shortly after a particularly scary collision, in which she jumped a curb and sideswiped the length of a concrete bridge railing, remembering only the approach to the bridge and coming to rest some distance from the other side, I discussed the situation with my sisters.  We decided to take the cowardly way out.  I borrowed her car, ostensibly to carry some items that wouldn't fit into my little Ford Escort (which was true), and simply failed to return it.  Ever.  She's not stupid, so after some time she figured it out, but we avoided the unpleasantness of actually iterating the decision and what made it necessary.  She and I both being somewhat gun shy when it comes to intra-family conflict, it was a crazy strategy that just happened to work.

That took care of our biggest fear -- that she would black out with a TIA behind the wheel and seriously injure herself, or God forfend, innocent others.  Another major fear remained, as she was experiencing falls with alarming frequency, and with her severe osteoporosis, it is nothing short of miraculous she had escaped suffering a serious fracture... yet.

Little by little, I was doing more and more for her.  It was manageable, but just.  I neglected some of my own needs, but nothing major.  It seemed sustainable.  Of course, that illusion was premised on the silly notion that things can remain the same, which as even a child can tell you, they never do.  Especially when you consider that she was approaching 90 at the time and, of course, still aging, and I have a disabling condition that was continuing to progress.  But, as both of us continued a gradual decline, hers more dramatic and rapid than mine, especially since I was actively taking therapeutic measures to manage my condition, I continued to take on more responsibilities for her care, in such small increments that I failed to ever consider, let alone evaluate, their cumulative impact.  By this time, I was handling much of her business, acting as her chauffeur, accompanying her to medical appointments both to advocate and to get the instructions straight, doing her shopping, helping with her housework, yard and home maintenance, and responding to calls from her medical alert provider when she took a fall, the latter of which, by this time, was happening once or twice a week.

Hmmmm.  I started this narrative by saying:

An important part of learning to live with a disability is determining for oneself what limitations one's condition imposes, and how to adapt to those changed circumstances.
Perhaps I needed to take a minute to tell myself that.  Or maybe I did, and a sense of duty outweighed reason in the matter.  I honestly don't know.  I certainly wasn't doing a good job of applying it, in any case.

Then it got very much more difficult very fast.  She had a full-blown stroke.

In Part II, we'll get into the nitty-gritty of a person with a disability going from part-time to full-time family caregiver.  Much of it ain't pretty.

But, I'll close this installment with a fast-forward to the present.  Mother is now in an assisted living apartment, with Level III (their highest) care.  She's been there for almost three months, most of which time I've been engaged in getting her financial affairs in order, and going through her belongings, preparing to empty her house so it can be sold.  Meanwhile, I'm also preparing to go back into active public ministry.  I'm not yet sure what my assignment will look like, except that it will be part-time, and geographically nearby, so that, even though the lion's share of Mother's care will now be performed by competent professionals, I can still be a presence in her life, and continue to manage her affairs.

My experience of having, little by little, taken on more responsibility than I should for my own good (even though it was by necessity), is definitely going to influence my discussions with my superiors with regards to my imminent vocational planning.

Thanks for "listening."

Originally posted to KosAbility on Wed Jul 25, 2012 at 02:00 PM PDT.

Also republished by CareGiving Kos and Community Spotlight.

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