Monday, March 12, 2012

Learning to Let Go...a Difficult "Life Lesson"

My mother pointed out an article in the Sunday edition of the Arkansas Democrat-Gazette that was reprinted from the Washington Post.  Written by hospital internist Craig Bowron, the article dealt with our efforts to prolong life... often at the expense of the very ones we vowed to protect and nurture.  We have a difficult time of letting go.  To read this insightful article in its entirety, click here.  I share below an excerpt I found particularly profound.

    This physical and emotional distance becomes obvious as we make decisions that accompany life’s end. Suffering is like a fire: Those who sit closest feel the most heat; a picture of a fire gives off no warmth. That’s why it’s typically the son or daughter who has been physically closest to an elderly parent’s pain who is the most willing to let go. Sometimes an estranged family member is “flying in next week to get all this straightened out.” This is usually the person who knows the least about her struggling parent’s health; she’ll have problems bringing her white horse as carry-on luggage. This person may think she is being driven by compassion, but a good deal of what got her on the plane was the guilt and regret of living far away and having not done any of the heavy lifting in caring for her parent.
    With unrealistic expectations of our ability to prolong life, with death as an unfamiliar and unnatural event, and without a realistic, tactile sense of how much a worn-out elderly patient is suffering, it’s easy for patients and families to keep insisting on more tests, more medications, more procedures.

    Doing something often feels better than doing nothing. Inaction feeds the sense of guilt-ridden ineptness family members already feel as they ask themselves, “Why can’t I do more for this person I love so much?”

    Opting to try all forms of medical treatment and procedures to assuage this guilt is also emotional life insurance: When their loved one does die, family members can tell themselves, “We did everything we could for Mom.” In my experience, this is a stronger inclination than the equally valid (and perhaps more honest) admission that “we sure put Dad through the wringer those last few months.”

    At a certain stage of life, aggressive medical treatment can become sanctioned torture. When a case such as this comes along, nurses, physicians and therapists sometimes feel conflicted and immoral. We’ve committed ourselves to relieving suffering, not causing it. A retired nurse once wrote to me: “I am so glad I don’t have to hurt old people any more.”  ©2012 Craig Bowron via The Washington Post
I found so much of this familiar.  Don't many of us know that "white knight" relative who wants to breeze in and "fix" everything?  We primary caregivers have all experienced the "helpful" friend or relative who thinks we should be paying attention to details we have already deemed unimportant in the overall scheme of things.  And yes, some of us who are closest to our elders can see what my grandmother sees... that "they's worse things than dying."

A couple of days ago, I was talking with one of my dearest friends, and I said, "I am amazed at how far my grandmother has come since her illness and fall at Christmas time."  She replied, "Don't you mean how far she has declined?"  "No," I explained... "I mean how much she has bounced back and improved.  She is walking and moving well.  She is probably as clear mentally as she was before the fall - even though she still is not all that clear - and she is incredibly healthy for a woman halfway through her 100th year!"

Mam-ma Polly and Timothy in late
November 2011, just days before
she was hospitalized for six days. 
Given all of this, I am extremely reluctant to agree to any "routine" medical tests, medication changes, or anything else that upsets her apple cart.  My mother and a few others have been quite upset with her lately for taking her walks outdoors.  Mom is so afraid she will fall on the sidewalks.  She keeps telling Mam-ma... "You have vast hallways to walk indoors... why do you need to get outside?"  Mam-ma's answer... "I need fresh air."  I get that... and if she falls happily walking outside in the warm spring sunshine, so be it. 

This weekend, a fellow resident who is still mobile spoke to my mother at church about "really getting after" my grandmother for walking across the street from her ALF to visit a friend who is in the nursing home.  My mother had already admonished Mam-ma not to make this trip.  Mam-ma has not mentioned it to me.  Honestly, I am fine with it.  My grandmother is at a stage in life where she has very little that gives her a purpose.  If visiting her fellow Sunday School member friend and offering encouragement gives them both a lift, who am I to say she can't make that walk.  Is it rife with potential pitfalls and dangers?  Sure it is!  Is there a chance she could fall and hurt herself seriously... face a length hospital stay or worse?  Absolutely!  Is it worth these risks?  I believe so.

My mother's cousin, who is 88 and has a litany of ailments, is dying. He was placed in Hospice care last week.  It took his companion of almost a decade a long time to come to the conclusion that he had already drawn... he was dying.  She kept insisting, "He can't die... I can't live without him!"  He insisted, "I don't have much longer."  And with virtually no quality of life remaining, he shouldn't have to. 
So last week, he raised his hand and said "No!" to more tests, needles, poking and prodding.  No more medications.  No more procedures to drain fluid that is building up around his vital organs.  Nothing but a reasonably comfortable bed in his own home, with his own television and people who love him to watch and wait.  He told me Sunday, "It won't be long now."  I told him that was fine... I would see him on "the other side."  He and I had agreed a few days ago that we are both okay with this.

I told my dear cousin what I would tell my grandmother or anyone else in this position... you don't have to stick around for anything or anyone who is here.  You have fought well... lived well... and now it's time for your big party.  Rest, relax, drift off to sleep and let the angels carry you to heaven when God has your mansion ready.  Hug your wife, my dad, and a few others for me... and save me a seat!

The longer my grandmother lives and the more time I spend in the presence of elderly people who are being somewhat artificially kept on this planet, the more convinced I am that Dr. Bowron has it right when he quotes the nurse who said, "I'm so glad I don't have to hurt old people any more."  There is no shame in recognizing that sometimes, we go too far.  In certain instances, we do more than is necessary... and we fail to recognize when enough is enough.  I pray that God would grant me wisdom to stop short of this... in the lives of those for whom I am caregiving - and that the same dignity would be afforded me if/when I reach this stage of life.

* * * * * * * * * * * * * * * * * * * *

Meanwhile, I do think my grandmother is still having little mini-strokes, and in the effort to provide information of the "you-just-described-what-is-happening-in-my-world" variety, I share the following:

My grandmother had company recently - cousins from another state who drove over for the day to visit with her, bring her KFC (her favorite), and maybe play a game or two of dominoes.  The night before they arrived, Mam-ma phoned me, upset... she was worried about how she was going to get ready for her company.  I was in bed with the flu - and she knew this.  I told her that she didn't have to do anything to get ready - her room was clean... they could go to one of the common areas and eat their meal and play dominoes... everything was set. 

After a long difficult conversation, I was able to determine through the brief words and a few tears that Mam-ma was worrying about how she would "clean up the mess" after the company left.  I finally said, "Mam-ma!  We're talking a couple of boxes and a sack from KFC!  There won't be a mess.  Besides, those girls would never leave you with trash and expect you to clean up after they were here."  What can I say?  Maybe it was the flu talking.  I was probably too curt.  But she sniffled and said, "Well... okay."

The company came and went, and the day afterward, Mam-ma called again... asking how I was feeling.  I was still sick and in bed... the flu really took it's toll on me, and that is never a good thought for Mam-ma!  I asked how her visit went, and she told me, "Terrible!"  She proceeded to cry and tell me she had grown tired and asked the company to leave, and she just felt awful about doing so.  I assured her that they probably were not offended... they had only planned to stay a few hours.  She was not convinced.

I spoke with the cousins later, and they said they had a wonderful time.  They arrived around noon and stayed until approximately 3:30 p.m.  They ate KFC... visited... and walked all over the ALF.  Mam-ma really showed them around.  They told me was talkative, but apparently she never suggested playing dominoes.  One of the cousins told me, "Polly started nodding off around 3:30, and we were needing to leave anyway, so we told her we thought we should head for home."  They were clueless that Mam-ma felt she had insulted them... in fact, leaving had been their idea - and they felt they had all had a wonderful visit. 

I am quite certain that Mam-ma enjoyed the day.  I am also quite certain that she had a mini-stroke that probably began the night before when she called and was worried about clean-up.  The nurse told me a few days later that she mentioned to Mam-ma, "I hear you had company over the weekend," and Mam-ma did not remember the cousins had been here.  She has never mentioned their visit to me again... and I have not mentioned it to her.  This is the pattern of the mini-strokes... confusion, even agitation and a sense that things are all awry, followed by extreme fatigue, maybe a little more confusion... and then the forgetfulness.  It's as if none of it ever happened.  Or... as in the case of a convoluted phone call a month or so ago, she will remember that something happened - and she was not herself - but she can't put it all together.

Last week, Mam-ma called twice.  For the woman who used to call several times a day, two times in one week is now a lot... and there is a lot of silence and struggle to find words when she does call.  The first call came at 9:00 p.m., and she asked (remember, this took several minutes to accomplish)... "Do you still have light bulbs?"  I determined that the bulb in Mam-ma's bedside lamp had burned out when she said, "Oh... I've turned on my bathroom light... maybe that will help."  I suggested she have an aide get the bulb from her other bedside lamp and swap them for the night.  She agreed to that.  I asked, "Are you okay otherwise?"  She replied, "Well, I'm just all shook up."  I (stupidly) asked, "What's got you 'shook up?'"  She answered, "Well, my light bulb in my lamp isn't working."  I reminded her to call an aide to exchange the bulbs... and she said she would.  I went to visit the next day (and take more incandescent bulbs I had rounded up from my own lamps - she will not use the new energy-efficient variety!), and she had done what I suggested.

A couple of nights later, Mam-ma phoned.  My husband looked at the clock - 6:45.  He knew immediately why she was calling.  It took several minutes to confirm that she was unable to locate "Wheel of Fortune."  It's March... the SEC college basketball tournament was in action, and the local station was broadcasting the games instead of regular programming.  I tried to explain that "Wheel of Fortune" would not be on that night - nor the next night.  "No!" she said, "I'm a lookin' at Ole Miss and Tennessee."  Exactly!

Mam-ma kept saying, "You don't understand!"  Finally, she got out, "Well!  Where is ABC?"  I told her again, "ABC is not on your TV right now because the ball tournament is being broadcast.  You will have to watch another channel tonight and tomorrow night.  I'm sorry."  "Oh... okay," she said, in a disappointed tone.  Honestly, I was just glad to hear her television blaring in the background - for the first few weeks of January, she never turned it on.  This tells me how much improvement she has made in the last month or so.

So while my grandmother is well enough to walk across the street and visit a sick friend at the nursing home, she may not remember that she went... nor be able to say more than three words to her when she gets there.  She still has trouble conversing, and on any given day, she may have a little mini-stroke.  She has become more "clingy" when I go - reaching out to pull me close for a second or third hug... crying and saying, "I've just missed you so bad," even though I visited two days prior.  The general decline continues.  She very well might fall and hurt herself badly while walking outside... and I might be making my next posts from her hospital bedside. 

But I am beyond trying to stifle any efforts she makes to stay active and engaged, short of her suggestion that she might like to drive a car one more time!  That, I think, is where I draw the line!