March 22, 2009

Caregivers: What about Death?

Posted by PeterT under Daily Challenges, Meaningful Caregiving | Tags: , , , , , , , , , , , , , , , , |
[3] Comments 

I spent almost an hour this evening with someone whose family Hospice told is in his last twelve to twenty-four hours of life.  Before retiring last summer, my career had been to serve as what in my religious tradition is a called a pastor.  What I have to say in this post is not only for those who happen to have a spirituality like mine, or any spirituality for that matter. 

First, I have a belief system that is secure and unwavering.  There are tools at my disposal when spending time especially with the dying, tools that offer profound hope in the face of death.  I make no apology for having such a belief system.  I do not ask the readers of this blog to share that belief system or any belief system.  It is my hope that my reflections on death have implications for all of us as we finally have to face the inevitable.  We cannot make it go away.  As helpful as denial is in the day to day celebration of life in the face of chronic illness, death must be faced for there to be any real joy in life.  Otherwise we are left with a spectre hanging over us that steals the joy from our days. 

Doc and I talked about how hard it is to leave behind people who are loved deeply.  Who will take care of them?  When the time comes, both those giving the care and those receiving the care have to come to terms with the separation that comes with death. 

Let’s not tiptoe around this one.  I have heard the plight of folks much farther into the unbearable pain of caring for someone who no longer recognizes them, someone who can do nothing for him/herself, who cannot converse, who is for all intents and purposes gone with only a shell of their former self left.  I have felt their frustration as they talked about struggling to love what is left of someone they loved deeply before the Dementia took its toll.  

How can they not long for death to come and release their Loved One from their helplessness?  How can they not long for death to release them to live again if they see death to be transitional rather than terminal.  This one is hard for me to talk about since Mary Ann and I are still far from that point.  In fact, I am anxious to write a post on Caregivers’ Romance, which by the way will be rated PG 45.  It is rated that way to warn our children and their spouses who may put what I write in the category once named by our Daughter-in-Law, “too much information.” 

For tonight, it is death that is on my mind.  Is death friend or foe?  While my theology has clear language addressing that matter, the experience of folks with whom I have interacted over the years is not simply theological.  It is experiential.  When death comes in a sudden, tragic way, when the victim is young, death is the enemy.  When someone has lived fully for many decades, when someone has fought a terribly debilitating disease, death may very well be a welcomed friend. 

The truth is, of course, that death just is.  However we define it or describe how we feel about a particular death, it just is.  We have no say about whether or not it will come.  It will come.  How it comes, when it comes is worthy thoughtful reflection and discussion.  Whether or not any one of us will die is not up for discussion.  We will. 

 My goal with Doc was to help him find his way to peace.  The way to peace is to finally decide to let go.  Both Caregivers and Carereceivers have similar problems.  Neither wants to let the other go.  Each thinks that by hanging on to the other, they can change the inevitable.  Each thinks they can keep the other for them to love.  They can keep the love alive, just not the body. 

Until we come to terms with death, we cannot live meaningfully — sadness is unbearable, and joy is shallow and fleeting.  We experience little deaths every time there is a separation.  There are tearful goodbye’s at the doors of preschool classrooms and college dorms and weddings.  I remember my Mother commenting that when we returned home for a visit as an adult family, when we left, she had to get in the car, go out and do something.  It was hard to say goodbye even then. 

We don’t want to let go.  If we don’t, however, if we don’t let go of that little one trying to learn to walk, that little one will never learn to walk.  If we love our child, we have to let go.  Otherwise it is not love, it is ownership, possession.  It is about us, not the child. 

Yes, to let go at the time of death is an act of love.  It is an act of love for a Caregiver to finally say, “I love you, I will miss having you here, but it is okay for you to leave.  I will be okay.”   It is an act of love, a final beautiful gift to the Caregiver and those who want so badly to keep the one they love, it is a gift to say to them, I love you, I will miss you, but it is okay for me to leave leave you now.  You are free to live. 

For the dying whose capacity to communicate has long since gone, the words of love may not be there, but the person who lived in that body before the Dementia took him/her still leaves behind love from better times.  The care you have given, maybe long after romantic feelings have been snuffed out, carries within it, love from former times.  Death can free memories of better times to surface and overshadow the struggles and the pain and the hopelessness. 

Death by its very existence gives life its sweetness.  In his dying, Doc is touching his family in a way that has folded into it an intimacy that can be found nowhere else.  I have had the privilege of experiencing a moment of that deeply moving intimacy. 

Is death friend or foe?  Sometimes it can be a merciless foe.  Tonight, as it approaches, it is a wise and thoughtful friend – a gift ready to be opened.

 

March 21, 2009

Stuck Caregiving! What am I missing?

Posted by PeterT under Daily Challenges, Meaningful Caregiving | Tags: , , , , , , , , , , , , , , , |
Leave a Comment 

We are now into the later stages of Parkinson’s and moving into Parkisonson’s Disease Dementia (a Lewy Body Dementia).  Traveling is tough.  We can’t really plan much of anything since we never know from one hour to the next whether Mary Ann will crash and fold for a couple of hours of napping, have a major intenstinal event, or need a trip to Baskin and Robbins, or Sonic, or DQ or Sheridan’s.  Getting very far from medical facilities that can handle the complexities of her convergence of medical problems, provides a strong disincentive to venturing very far. 

To a certain degree, we are trapped by the Parkinson’s.  The dream of that train trip across Canada appears to be left to the world of fantasy.  My dream of a log cabin in the country is not an option, although I doubt I would be willing to do the work necessary to take care of such a place anyway.  That trip to the Snowy Mountain region of Australia is out of the question. 

There are all those other retired folks who travel and dine out and go to shows and concerts.  We have never so much as seen the Grand Canyon.  Just watch cable television for a while and look at the beautiful, exciting places to go and things to do.  There will be no dinner-dances (gratefully, since I can’t dance).  There will be no treks into the woods or wetlands for rare bird sightings. 

What are you missing?  What are the things you planned to do before the Chronic Illness joined your family?  Are you going stir crazy looking at the four walls of your home, or the inside of your car as you make short local trips, or the waiting rooms of multiple labs and doctors offices?

I have to admit that at the moment, I do not have identifiable feelings of resentment about what I am missing.  I can only speak for myself on this.  I will not presume to speak for Mary Ann. 

We have had some adventures in our life together, however low key they may be.  We have toured England, the Netherlands, Austria, Switzerland, Belgium.  We have cruised the Virgin Islands and traveled to Denali in Alaska and cruised the coast to Vancouver.  We have skiied in Colorado.  There was also that trip to DesMoines — the notorious diversion from Colorado triggered by uncooperative children in the back of the station wagon. We have made it to see Santa Barbara and the Carolinas. 

All that is not to impress you with our travels.  For over forty-three years of marriage, that is nothing to brag about.  That is not the point.  The point is, as much as we were in awe of the beauty we saw, it did not give our life meaning and purpose.  What we saw was interesting greenery, colorful flowers, varied topography, beautiful structures.  Sometimes we stayed in rooms with nice looking decor, sometimes in very ordinary accommodations. 

When a Volunteer comes to stay with Mary Ann for a couple of hours, I sometimes head to a nearby lake with some of the most beautiful gardens imaginable, filled with ponds and waterfalls, colors dramatic enough to take my breath away.  I can head out to places where Eagles are nesting and water birds are migrating by the tens of thousands.  Within an hour and a half of here we can find restaurants as good as any anywhere and take in the occasional show.  When all the pieces fall in place, I can travel to a spot a few hours away and spend two or three days in utter solitude, hiking and reading, observing wildlife, feeling the warm sun and the soft breeze on my face, the rustle of the leaves, sunsets that fill me with wonder. 

Yes, I am missing wonders that are spread all over the world.  What I am not missing is the capacity to experience the marvel of all there is to see as the sun and the moon and the stars illuminate the part of the planet in which we live.  The topography (admittedly, pretty flat in this Midwestern location), the flowers, the birds, the trees, the wildlife, restaurants and stores and movie theaters are here to be experienced. 

More than that are people of all sorts, with stories to tell.  In fact, through the wonders of technology, I can interact wtih people from all over the world.  In our online group of Spouses of those with Lewy Body Dementia, there are people from New Zealand, from Italy, from Wales, from Canada, from all over the this country.  There are children and Grandchildren to be celebrated.

I guess I am just not sure I am missing anything so important that it needs to make me sad.  Sure, if circumstances allowed it, we would take that train trip across Canada or see the Grand Canyon, I would venture off to Australia, live in a log cabin in the country, but if none of that ever happens, I will not despair at all that I have missed in life.  Life has been full to the brim.  More than I ever thought to dream has come to be in one way or another. 

Again, I have to ask, what would you like to experience were it not for the commitment to Caregiving that shapes your life now and limits possibilities?  How does it make you feel no longer to have the option to realize those dreams as you had imagined them?  What do you do with those feelings?

 

March 20, 2009

Caregivers: What did we do to deserve this?

Posted by PeterT under Daily Challenges, Meaningful Caregiving | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
1 Comment 

Are you as tired as I am of hearing “nowhere does it say that life is fair?”  As painful as it is to admit it, those words are true.  The harsh truth of it is, bad things happen to people, both the good and the bad.  Good things happen to the bad as well as the good people. 

Those of us who are dealing with a devastating illness that holds no promise of improving, can get pretty angry and very bitter.  When we do, we begin the search for someone or something to blame.  If we can find a genetic source, we blame those who provided the gene pool from which our Loved One came.  We can search the Internet and the journals and all the information we can locate to see if there is some environmental factor.  Then we look for whoever may have put the toxin in the environment. 

Sometimes we search for something we or our Loved One has done, some lifestyle cause.  If we  happen to believe in God, when all else fails, we blame God.  Oddly, if we do not believe in God, we use the terrible, unfair, devastating disease to prove that God doesn’t exist.  When we are at a complete loss to explain why whatever it is has come into our lives, we often cease to be rational at all.  It is God’s fault and we will punish God by not believing in God.  If we do not or have never had a religious dimension to our life, we are just angry at the meaninglessness that is intruding into our short stay on this planet. 

What I will say next sounds silly, stupid, shallow, and without any value in helping us cope.  Stuff happens!  You have seen the bumper sticker with more crude language.  Stuff happens!  Whether you happen to have a theology or no theology, faith in something or in nothing, stuff happens. 

If you are convinced there is nothing that exists other than what we can see, measure, or extrapolate from what we can see or measure, then having Parkinson’s or ALS or Diabetes or MS or Lewy Body Dementia or Alzheimers, or Huntington’s or whatever comes is just a fluke of nature, with no meaning. 

If you believe in God, however you define or confine that God, finally, the same is so.  Any God powerful enough, of such  magnitude as to be able to bring a universe of immeasurable size into being, containing powerful forces that could snuff us out in a millisecond – however personal that God may be to you, there is no way to begin to have the perspective of such a God to actually find an explanation that fits into our little minds. 

We cannot answer the question why!  It is a waste of precious time and energy.  We can find our way to the most intelligent human on earth, the most sophisticated computer, the most trusted theologian, the wisest guru, and we will not find the answer to the question, “Why, why me, why us?”

Here is what we can do.  We can look and listen, think and read, talk and ponder all the dynamics of what we are experienceing and do two things: One, learn something.  Don’t waste the pain, the struggle.   Learn something from it.  Two, use every ounce of creativity and information available to do things that use absolutely to the fullest everything you and your Loved One are still able to do — while you can do it.  Put those two things together, and you just might make some discoveries that add to the quality of your life. 

Battle the truth of your situation as if it should not be true, cannot be true, must not be true, and bitterness, cynicism will fill your days and  your relationships; the capacity to find joy and meaning in life will disappear. 

After the hospital stay precepitated by Mary Ann’s congestive heart failure, and the heart attacks and angioplasty and stent, followed by another stay for heart problems, followed by the life threatening pneumonia, followed by the stroke, followed by the Dementia, all emerging after years of battling the Parkinson’s, it dawned on me, that I never really felt that it was unfair that so many things came, one after another.  Fair is not a reasonable expectation.  Just because one thing happened to us, did not mean that we were any more or less likely to experience any other problem (except those of course that are a direct consequence of some current debility). 

No one is punishing us.  We are no better or worse than anyone else.  Things happen.  For us, when they happen, they become opportunities to learn, create solutions, develop mechanisms for finding meaning and fulfillment in what is so.  It is just so.  We can’t explain it or understand it or change it.  We can, however, choose to live in spite of it. 

I wonder what battles you have fought trying to come to terms with what is going on in your life as you deal with what has come your way.   Who do you blame?  At whom do  you scream when you are at your wit’s end?  Where do you turn to try to make sense of what your are going through?

 

March 19, 2009

Caregivers: Is It Okay to Whine or not?

Posted by PeterT under Daily Challenges, Help from Others | Tags: , , , , , , , , , , |
Leave a Comment 

One of the issues in the matter of keeping friends is, how much we should whine to people about what we are going through.  People don’t understand unless they have done it.  They just don’t understand.  People get tired of hearing about what we and our Loved Ones are going through.  It is hard to understand what it is like for every need of someone else, from the  tiniest need to the most serious need to have total priority every moment, waking or sleeping.  Their tiniest need trumps our biggest need.  After all, she has Parkinson’s.  She didn’t choose to have it.  It just happened.  She can’t pull the covers over her or turn over in bed or get the last of the Cheerios to her mouth without them sliding out of the bowl on to the table.  It is not her fault.  It is just so.  Her needs trump my needs, the needs of the very one on whom she depends for her daily survival.  The truth is, no amount of explaining or whining can give someone the full weight of something they have not experienced. 

You know the story.  Some of the people you have counted as friends come with words of sympathy when the diagnosis is made.  Some hang in there for weeks and months and even years.  Some surprise you with their willingness to help.  There are those who will offer to do things you would not have thought to ask for until they offered.  And then sometimes, after a while, they just seem to tire of it — take for granted that the two of you will manage.

As I write this, I have to admit that we are spoiled — really spoiled.  In the past seven or so years, when we have struggled the most, as many as sixty-five Volunteers have helped us.  Very many of them came in shifts, two or three hours at a time to be with Mary Ann at our house, to talk with her, help her get around, get food for her, assist her with her personal needs, read to her, take her out for a stroll in her transfer chair. 

Yes, Volunteers have dwindled over the years as they have gotten older, their own families have come to need them, and/or Mary Ann’s needs have exceeded their ability to care for her.  When I retired last July, a few decided to continue to spend time with Mary Ann, even though I no longer need to be gone from the house sixty some hours a week to serve them and their families. 

Those Volunteers have come to be friends, especially Mary Ann’s friends.  There is no need to whine to them.  They are in our home and very much aware of the demands on a full time Caregiver.  We have been and continue to be spoiled. 

The question is, how much should I say to others when they ask how we are doing?  What do you say, those of you who are doing Caregiving?  People care, but when they ask, often they don’t really want to know.  They don’t want to hear it again.  What do you say to them?

The trouble is, those of us who are full time Caregivers have pretty much one thing to talk about.  To sit down and actually read a book, or even an article more than a few paragraphs long is virtually impossible when the needs come every few minutes, when taking eyes off that Loved One can result in some sort of crisis happening before it can be averted.  There is little chance to pay attention to anything else.  A Rodgers and Hart song, “Johnny One Note” describes us whining Caregivers.  It is no wonder friends sometimes begin to drift away. 

What can we do about it?  It seems to me that there is a simple truth that offers the key to keeping others in our lives.  Care about them.  We need to ask them how they are doing and mean it.  We need not to trivialize their problems, even though ours may seem to make theirs seem to be of no importance.  Their problems are important to them, as important as our problems are to us.  We can become so immersed in our seemingly impossible situation, that we can see nothing else. 

It seems to me that we actually have a unique set of skills taught us by the most difficult situations we have faced.  We actually can understand what many others don’t.  We can be exactly the friend others need.  Yes, sometimes we are shocked at how petty some of the problems others see as so important are in comparison to ours, which far exceed theirs in that great metric in the sky — at least in our eyes. 

One of the great gifts available to us are groups, support groups, on-line groups.  (Find them by Googling the name of the disease in  your household, adding the words “support groups.”)  There we can whine to our hearts’ content.  There we can find people who understand exactly what we are going through.  Whine there, not to every acquaintance who dares to say, “how are you?”  It is no wonder we sometimes lose friends.  We want them to prove that they are friend to us by listening, understanding, sympathizing, offering to help, but we are unwilling to be friend to them. 

What sort of friends do  you have?  How do they help you?  What do  you say to them when they ask you how you are, how your Loved One is doing?  In what ways are you friend to them? 

Is it okay to whine or not?  What do you think?

 

March 18, 2009

Keeping Friends while Caregiving/Receiving

Posted by PeterT under Daily Challenges, Meaningful Caregiving | Tags: , , , , , , , , |
[2] Comments 

We just returned from an evening with friends of some thirty-five years.  As always it was a wonderful evening of good  food (Irish, of course), great conversation, and reminiscing. The eight of us, four couples have lived in the same town only fifteen of those years. We now live about an hour away from them.  the distance does not seem to separate us in any other way than geographically. 

We have stayed friends throughout Mary Ann’s progression from the Parkinson’s Disease diagnosis to the Parkinson’s Disease Dementia that is now emerging. Many who have shared experiences have revealed that friends have sometimes simply left, as the disease has progressed. 

Tonight, bathroom needs, disruptive hot flashes, challenges in eating were all part of the evening’s events.  Those challenges were simply taken in stride as part of what it means to be together as friends.  One of the group, Marlene, has been dealing with a slowly progressing version of ALS (Lou Gehrig’s Disease) for around seven years now.  She is completely wheelchair bound.  Her husband Charlie and I have much in common to talk about — he, however, is a much better cook that I.  Chronic illness with no reasonable expectation at the moment of anything other than decline, has not diminished the strength of the friendship that binds the eight of us.  It has seemed to draw us even closer together.

Our experience with this group is not necesarrily the norm.  Some, maybe some of you, have had other experiences with the impact your Loved One’s Disease has had on friendships.  I have lots of thoughts about keeping and losing friends, doing things that can build lasting friendships — even when unpleasant symptoms seem to keep friends away.  Let’s start with your thoughts! 

What have been your experiences, good or bad, with friends sticking with you or slowly disappearing from your lives as your Loved One’s disease has progressed?

 

March 17, 2009

Caregiver/Receiver Denial is Underrated!

Posted by PeterT under Meaningful Caregiving | Tags: , , , , , , , , , , , , , , , , , , , |
[5] Comments 

When I was little, before toys had been invented, my imagination was the primary source of entertainment.  With my imagination, in the living room, I could make a store of chairs with corn kernals and toilet paper rolls and all sorts of treasures that were laid out on each chair as the merchandise.  Yes, I have a bit of the entrepeneur in me.  I would sit on the floor in front of that little ivory colored table model radio off in a wonderful world of adventures, The Lone Ranger, Gang Busters, The Shadow, Sky King, Sargent Preston and his dog King, The Green Hornet, Superman.  

I cannot describe to you the magnitude of my disappointment when The Lone Ranger came to television.  Who was that skinny little man and his tiny horse who claimed to be the Lone Ranger and Silver?  No human actor could measure up to the Lone ranger of my imagination.  I liked the world of my imagination.  It was exciting, filled with possibilities not limited by the harsh realities of being a kid with Rheumatic Fever who wasn’t supposed to do anything that would break a sweat.  My brothers and sisters with whom I now enjoy a wonderful caring relationship in spite of the miles between us, my brothers and sisters were out of the house and on their way long before I headed off to college.  For all intents and purposes I was an only child, who spent lots of time in a world of my own making. 

I liked that world.  In that world I was whole and fulfilled.  In the other world, the one at school, with the other kids, the one in which I was measured by Dad’s expectations, teacher’s expectations, strata determined by others — most of whom came from far more affluent families than mine — in what some call the “real” world, I was not worthy of notice. 

You know, reality is not all it is cracked up to be.  Yes, I am short and chubby and forgetful and often given the Senior Discount without asking for it.  On the inside, I am snappy and hip and sharp and with it and young and sexy.  You wonder why I contend that denial is underrated? 

Let me tell you what I think Mary Ann feels about this denial business.  For the first five years after diagnosis Mary Ann refused to let me tell any but a couple of conficants that she had Parkinson’s.  In fact she was not convinced she had it.  If I were to press her on the matter, some twenty-two years later, I think she might just suggest that maybe she doesn’t really have Parkinson’s. 

When Mary Ann says, “they won’t let me in the kitchen any more,” I think she means, I could do it — I could chop those vegetables, wield sharp knives, and handle those hot pans just the way I did when “they let me in the kitchen to cook.”  (Yes, I am the “they.”) 

When Mary Ann hops out of that chair and heads off for whatever, I think in her mind, she does not have Parkinson’s, she will not faint due to having Orthostatic Hypotension (fainting due to low blood pressure — a mysterious combination of the disease process and side effects of meds).  

I am convinced that it is her denial that has kept her alive, fueled the feisty stubbornness that has brought her through heart attacks, clogged arteries, congestive heart failure, a life-threatening bout with pneumonia, a stroke.  As far as she is concerned there is nothing wrong with her but limitations put on her by a bunch of worry worts (most named Pete). 

Back to the Lone Ranger.  I liked the Lone Ranger of my imagination better than the one using an ordinary human actor, limited by reality.  While it frustrates me when I am trying to help Mary Ann stay safe, avoid trips to the hospital, keep alive, I think denial is a necessary tool for daily survival.

Let’s be straight about this.  Every time Mary Ann is in bed and very quiet, a little voice tells me to listen carefully to be sure she is still breathing — that she hasn’t died.  Every time she gets up to walk can be the last time.  She can faint or lose her balance and hit her head on something.  Head injuries are one of the most common causes of the death of someone with Parkinson’s.  Yes, this is part of our reality.  We have been to the emergency room.  I have had to call the children to come from other parts of the country, told that she might not survive the night.  We have been told twice that she was within a hair’s breadth of going on a ventilator.  Yes, Parkinson’s Disease Dementia (a Lewy Body Dementia) has begun and is likely to get worse until she does not recognize me or the children.  Yes, she may choke on her food (aspirate it into her lungs) and not survive.  Plaque might break loose from that rough surfaced lesion in her carotid artery.  A clot might form due to inadequate heart function — a clot that could take her in seconds. 

That is reality.  Is that how we should live, facing reality moment by moment, immersed in the truth?  Hell, no!  (Excuse my French, as they say — please don’t be offended if you happen to be French — Mary Ann is.)  The way to live is in denial!  Every day when we get up, we are as alive as anyone else.  We have things that need to be done that are shaped by our circumstances, but we are as alive as we were yesterday and as we expect to be tomorrow.  Don’t feel sorry for us or patronize us or suggest that our quality of life is any less than anyone else’s.  We love and feel and dream.  We are filled with the beauty of spring flowers and blue skies with puffy clouds.  We draw in the wonderful scents after a rain, we eat ice cream voraciously.  We cherish friends.

That is the reality in which we choose to live.  In our denial, we are not foolish.  We do what can be done to ready ourselves for things that are likely to come.  We have purchased our burial plots.  We have written down our preferences for funeral services.  We have chosen to live in a maintenance-free (hardly free) home.  We have enlarged doorways for wheelchair and walker.  We have purchased a lift for times I am unable to get her up.  We have checked out options for future care.  We have living wills and durable powers of attorney.  We are not stupid.  We acknowledge reality and deal with it.   We just choose not to live in it day by day. 

Give me the bigger than life Lone Ranger I saw in my mind’s eye, as I heard his booming voice with with my mind’s ear say, “Hi Yo Silver, Away.”

You can have Reality.  Mary Ann and I choose Denial.

 

March 16, 2009

Caregivers in Waste Management

Posted by PeterT under Daily Challenges, Practical Tools for Coping | Tags: , , , , , , , , , , , |
[2] Comments 

In the Caregiving business, it becomes evident very quickly, that our lives (all of us for that matter) revolve around activities of our alimentary canal — input and output.  It is how we survive.  There is input that brings with it the raw material from which is mined fuel for burning in cells of one sort or another so that we can simply stay alive — be who we are, do whatever it is we do.  Then there is what is left after the fuel has been mined.  In Picher, Oklahoma, there are toxic Chat Piles, a Superfund site destined for cleanup.  The output must be dealt with.  It is called Waste Management. 

For humans the management of input and output is primary parent activity.  Those tiny people after they pop out have clear goals in life: eat, sleep, fill their pants and cry (or coo) to manipulate the big people in their homes to manage their input and output needs. 

As adults, we often collaborate on the input.  Someone or both provide the resources for purchasing the food to be prepared for consumption.  There are any number of options for getting the food ready, maybe one does the grilling outside and the other deals with the range and oven.   For the most part, we do our own personal waste management. 

When Chronic illness joins the family, not only does full responsibility for input become the responsibility of the Caregiver, but sometimes output, waste management, becomes the full responsibility of the Caregiver. 

At the risk of becoming indelicate (there is nothing delicate about waste management), I now am in charge of output in our household.  Understand that “in charge” does not connote control of when, where and how much, just dealing with it when it does come. 

There are certain rules provided on the training CD.  One is that there will be multiple expulsions of wheat colored liquid during the night.  Those events demand help from the one in charge of waste management, so that what is expelled ends up in the bedside commode (Medicare will provide that tool).  By the way, the color is important.  Too much color (dark amber) suggests dehydration and the need for more liquid input.  Red means it is time to call the doctor. 

The rules say that at least one of those trips to the commode will happen during  the Caregiver’s deepest sleep, that deep sleep we are told must not be interrupted if we are to stay healthy and functional.   Some nights there are two or three trips, other nights many more.  It is no wonder that sometimes Caregivers are not always sharp and bubbly and upbeat about how things are going.  Anyone who tells a full time Caregiver to buck up and stop whining, other people have it worse, any such person may be harmed physically — at the worst it would be categorized as justifiable homicide. 

My task is simpler than those who care for male Loved Ones.  It is far easier to contain liquid waste that drops into the commode than that for which aim is more of a challenge. 

Then there is the management of solid waste.  Those who have Parkinson’s or some other chronic illnesses may no longer have the dexterity to reach the place most in need of being reached when dealing with output.  That is where the one in charge of Waste Management springs into action.  (That just sounded silly, but please bear with me.  I am trying to say all this in a way that doesn’t gross anyone out or embarrass the ones who to their horror are in need of such help).

The rules of solid waste management are these:  it comes when it comes, and often without warning.  Almost without fail, it comes in the middle of a meal.  I suspect I can move that transfer chair (wheel chair with small wheels for indoor use) from zero to thirty-five (the indoor speed limit at our house) in a matter of seconds — pants down and seated measured in fractions of a second.  My motivation?  Need I ask?  As the one in charge of waste management, it is my responsibility no matter where it lands.  By the way, it has come to be so, that performing my   duties does not impact my ability to finish eating the meal.  Sometimes I wish it would — every time I step on those silly scales at the doctors’ offices, the ones calibrated purposely to publicly humiliate anyone who stands on them. 

The rules of solid waste production also include emergency needs during trips out to social gatherings, grocery stores, restaurants, church or synagogue or mosque or society meetings.  It happened again tonight.  Waste Management has gender implications.  For those of us whose Loved One is the other gender, there are very unsettling complexities to fulfilling the role of chief of output. 

I dread it, just dread it.  No matter how understanding people are, a busy women’s restroom with multiple stalls is not a welcoming place for a man.  When she needs to go, she needs to go.  I have learned to seek out one-holers –  men’s and women’s restrooms that have one stool and a door that can be locked behind us.  Most Casey’s General Stores, some Arby’s, often Subway sandwich shops, some Taco Bell’s, some Pizza Huts, many small convenience stores have one-holers.  Of course the greatest invention in the history of humanity is the family bathroom.  Some newer rest areas, airports, Walmarts have them.  Gratefully, there is almost always someone around who can be enlisted to guard the door while we are both in the ladies room.  Then there was the time we entered a large but quiet ladies room, only to discover that while we were in there, a busload of thirty-one Second Graders came and were standing outside, their little legs crossed, while we had a substantial need to deal with on the inside.   

I suspect that other Caregivers share with me a quiet terror that lies in the recesses of our minds all the time, a fear fueled by horrible memories of past experiences with it — the dreaded diarrhea.  How many times have we changed bedding, maybe thrown away a mattress we just couldn’t clean, tossed clothing or sheets because we couldn’t face again the task of trying to get the stains out, scrubbed bathroom floors and walls, cleaned carpeted areas. 

I have to say something now that will probably seem sort of pollyanna in its tone.  I don’t like the job of waste management.  Sometimes it feels as it the smells will never leave my nostrils.  Sometimes it seems as if we cannot have much of a life as long as we are ruled by providing input and manageing output.  For me, it has come to be part of my job.  It is what I do.  It is neither good nor bad.  It just is.  When waste needs to be managed, it gets managed.  We use what we call pads (absorbant paper underwear), baby wipes, chuks (absorbant, plastic lined fold out sheets) for under the bottom sheet on the bed.  We put fitted plastic sheets under the mattress pad.  We have a bedside commode right there so that few steps are needed at night.  There are pads and babywipes in her purse.  We take just the right balance of over the counter Miralax and Senna to keep the activity somewhere between constipation and diarrhea. 

We do it for our babies, we do it for the people we love who can no longer do it for themselves.  It is the way we express the love we declare with our words.  However stupid it sounds to say it, I find Waste Management to be a nobel profession.  It is not for sissies.  When the job has been the most difficult and frustrating and messy, afterward (not usually during) I feel as if I have just been engaged in the game of life, living it to the full, not watching it go by from the sidelines.  I am somebody, doing something that actually makes a difference for someone I love.  By the way, talk about heros — thank a CNA (Certified Nursing Assistant) who serves in Waste Management at hospitals and nursing homes, next time you see one.   

There!  I did it!  I knew this had to be written.  I just didn’t know how to do it and when to do it.  Caregivers in Waste Management, maybe we could form a Union — however, no striking allowed.

 

March 13, 2009

Care Receiver Feelings

Posted by PeterT under Meaningful Caregiving | Tags: , , , , , , , , , |
[3] Comments 

So, how does she feel?  How does Mary Ann feel?  How does she feel that she needs to push a button to be able to do the simplest of things?  I asked her.  Understand, Mary Ann does not talk about feelings.  Mary Ann doesn’t talk much at all.  It is often hard for her to gather her thoughts and put them into words.  In fact, sometimes she is convinced that she has said what she was thinking when nothing at all has come out of her mouth.   She wonders why I am asking her again. 

How does she feel?  One of my jobs is to determine what she is feeling by assessing the elements of the situation, by remembering how she has reacted in past to similar circumstances, by looking at her face, by noticing her body movements, trying to find my way to what she is thinking, but not saying. 

How does she feel?  This time I just asked her.  I asked her how she feels when she presses the button.  It was apparent that she was trying to think of a way to respond but struggling to get to the thought and the words.  I formed the words for her so that she could answer yes or no. 

One of our barriers to communication is my unceasing need to ask either/or questions.  “Do you want a Turkey and Provolone sandwich, left over pasta, or scrambled eggs for lunch?”  “Yes.” she responds.   “Which?” I say.  Her next response?  Silence.  Was her “yes” to the first of the three, just a little late in coming?  Was her “yes” to the last one of the three?  Actually, she is bored with the default lunch setting, Turkey and Provolone, Fritos and a Pepsi.  Leftovers are by definition unfit for current consumption and an offense to Mary Ann’s palate.  It must be the scrambled eggs — my last choice since it means actually using a major kitchen appliance (the one with burners and knobs rather than the one with the little door and buttons). 

I read a book called LIfe in the Balance, by Dr. Thomas Graboys.  He has Parkinson’s and is moving into Parkinson’s Disease Dementia (a Lewy Body Dementia).  Some parts of his book could have been written by Mary Ann.  The part that sticks firmly in my mind is his description of trying to communicate.  He struggles to find the words, put them together, and get them out of his mouth before the time has long since passed for his reply to be relevant to the conversation. 

I have learned that communication works best when the question is a yes or no question.  I have learned that trying to intuit what she is thinking, then saying the words and asking, “Is that what you mean?” allows at least the possibility of finding our way to the thought in her mind that is seeking release. 

So this time I simply asked her, “How do you feel when you press that button to call me for help?”  I formed a couple of answers, “happy that I am coming to help, unhappy that you have to bother me, or some of both?”  (I did it again, an either/or question!)   Seeming to discern some non-verbals when I said “both,” and expecting that to be the answer, it was clear to me that the “yes” was to, “both?”

Apparently, she, too, has a love/hate relationship with that little electronic doorbell.

 

March 11, 2009

Coping with Challenges

Posted by PeterT under Meaningful Caregiving | Tags: , , , , |
Leave a Comment 

Mary Ann and I have been married for over forty-three years now.  For twenty-two of them she has had the diagnosis of Parkinson’s Disease.  As anyone who has a spouse with a chronic disease understands, both have the disease.  There are no longer just the two of us, but three, Mary Ann, Pete and the Parkinson’s.  Since we can’t make the Parkinson’s go away, we have to decide what place it will have in our journey.  Rather than fight it or concede to its rule, we simply live meaningfully and fulfilling lives in its company. 

With that said, there is nothing easy about living meaningful and fulfilling lives in the company of Parkinson’s or any other chronic disease for that matter.  The meaning comes in many forms, two remarkable children and their spouses, as well as, three beautiful Granddaughters give meaning to our lives.  If we never did more than serve as participants in the delivery of those people to the world, it would be enough.   Meaning comes in the relationships that have been nourished by being drawn together in response to the struggles brought by the Parkinson’s.  Fulfillment sometimes comes  in the messiest, most humbling tasks demanded by the chronic illness.  In the most frustrating moments lie the seeds of purpose.  The challenge is to nurture those seeds in a way that allows them to sprout into life that is vibrant and stimulating and satisfying.  The key to that nurture lies in a healthy view of life that does not demand pretense or perfection, but provides strength and hope that trumps despair. 

This blog intends to provide some practical tools for dealing with the daily challenges of chronic disease, as well as some ways of understanding the task of caregiving that nurture the spirit.

 

« Previous Page