March 27, 2009

Working and Caregiving: Help!!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , |
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I got back earlier today from doing something that was a part of my job before I retired.  I remembered.  I remembered what it is like to have to get someplace and do something required by a paying job, while at the same time having a more important responsibility tugging against that job, responding to the needs of the one for whom  you are caring.  The chances are the income from that work is necessary for putting food on the table and keeping a roof overhead.  You are likely to be the sole sustainer of the environment in which you do the Caregiving. 

What can complicate it even more for those who are working full time and doing full time care for a Loved One, is, should it be so, that job being something deeply satisfying and fulfilling, something that gives meaning and purpose to your days, something for which there is not only the tangible affirmation of being paid for it, but sincere words of affirmation from those being served through your work. 

I remembered.  I remember the feelings of being so tired that it hurt, it just hurt.  I remember seeing no way to survive the next week or day or hour or minute.  I remember the panic of knowing there was an absolutely necessary commitment being threatened by a last minute major need in the life of the one loved deeply who needs you a that same moment.  I remember heading off for a day so full of intensely demanding activities as to be more that could be handled when rested — that day being faced after the third night of very little, sometimes no sleep.

Help!!  Some of you who happen upon this post are at your wit’s end, the end of your strength and stamina.  I have read emails from folks who work and care for someone far into Lewy Body Dementia.  I have known well a number of folks who have cared for someone with Alzheimer’s Dementia.  I have walked alongside many who have cared for someone dying of one or another form of Cancer, ALS.  Most of them have had to somehow manage to maintain a livelihood, a career, a job of some sort, while their heart and mind and attention were dominated by the needs of the one they left when they went off to work each day.

When I was working full time and doing full time care when not at work, sometimes people would say, “I don’t know how you do it!”   My answer was usually something like, “It is just what I do.  Everybody has something to deal with.  This is just our particular challenge.”  Now that I am retired and doing full time Caregiving only, I don’t know how I worked full time and cared for Mary Ann when I was at home. 

I have no simple solutions to the problem of balancing work and caregiving in a way that keeps the Caregiver able to function at both tasks.  As I reflect on those years, there are some things I remember doing to keep from being reduced to a heap of quivering flesh. 

I started with having a career that is deeply fulfilling.  It was stimulating, creative, energizing, brought me into some of the most intimate moments in people’s lives.  Finding purpose in work helps the work become a tool for survival.  Even if the job sometimes seems to you to be such a small part of some institutional activity as to be virtually meaningless, think for a moment.  Of what is your job a part?  Who depends on you doing your part of the whole task?  Finally, there is some reason that you are being paid to do whatever it is you do.  Someone needs the product or service that is the end point, no matter where what you do falls in the process or how tiny a part it may seem to be.   Yes, there may be people in that workplace who seem bent on making your life miserable.  Yes, there may be a culture that diminishes the value of what you do.  Don’t give away the power to decide for you what value you find in what you do.

Lot’s of folks I know bring a healthy lunch with them to work, along with some walking shoes and head out with a friend or two for a mid-day dose of exercise and the concomitant endorphin rush (a legal high).   Sometimes a two minute visit to an online site that has beautiful pictures and music can provide a moment’s retreat and help provide some balance in the day.  Exercises at the chair, or walking the stairs instead of using the elevator, or parking a long way from the door can provide some help in managing the impossible load. 

When returning to the house from work, the needs for my help were always immediate.  There was never any decompression time, transitional time, a moment to catch a breath before the accumulated needs had to be fulfilled.  I have heard some say that they arranged for whoever had been staying with their Loved One (whether paid or volunteer) to stay an additional length of time to give them a change to get their bearings.  That never worked at our house.   There was always an expectation that I would give immediate attention. 

While at home, having a list in mind (or written down) of things that take very little time to do, whether household tasks or activities that provide a moment’s break or some activity that includes a bit of renewal or personal satisfaction can allow a touch of balance.  Instead of wasting precious time immersed in frustration and feelings of powerlessness, be very intentional about creating and taking moments for yourself.  In  my case those moments would be used immersed in my own thoughts, reframing what I had just been doing in a way that allowed a sense of accmoplishment or purpose.  I sought moments of distraction engaging the elements of the day, sun, rain, clouds, birds, flowers, trees, fresh air, the feel of the breeze.   A trip to my favorite spot for soaking in a Kansas view can be done in twenty minutes including travel time.   Two night, three day, trips to the Spiritual Renewal center in Oklahoma happened twice a year when I was working.  The time in the car was retreat time as CD’s of my favorite music calmed my spirit. 

While those moments of reflection, of engaging my senses worked best for me, what has worked for you?  The challenge is to find things that can be done in the moments in between caregiving tasks.  How are you managing to survive both working and caregiving?  How do you keep from unraveling completely?

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

March 26, 2009

Caregivers: Your Medical Degree is in the Mail!

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Mary Ann and I both had appointments with the Cardiologist today.  We knew him as a parishioner before he became our Cardiologist.  We like him very much.  He is good.  Very good.  We are grateful that he is good since Mary Ann has so many problems associated with her heart and its functioning.  He is an important member of the team.  It is a team.  The team includes the Cardiologist, the Parkinson’s Clinic Neurologist, the local General Neurologist, the Gastroenterologist, the Primary Care Physician (General Practitioner),  the Nephrologist, the Ear, Nose and Throat specialist, the Dermatologist (who has removed her four Basal Cell skin Cancers), the Endocrinologist, her Physical Therapist, Speech Therapist, Occupational Therapist, Clinical Psychologist, two or three hospitalists, along with numerous medical technicians and nurses of all sorts, some seen only once, some who are practically like family.  We have great medical care.

Each of these people is very good at what he/she does.  Each has specialized in a certain body system or body part.   The Primary Care Physician has the largest chart for Mary Ann, but there is no way he can keep up with all the tests and treatments and medications with so many different people making independent decisions about what to do to treat the problem in their area of expertise.

Here is the obvious problem in this marvelous Team effort.  Mary Ann is actually a single living being who is not simply a gathering of independent systems and body parts.  She is a whole somebody.   Every system is connected to every other system, making up a single functioning human someone. 

Any of you who has been a primary Caregiver for a Loved One with Parkinson’s or any other chronic illness understands very well nature of the your role as a Volunteer Medical professional.  All those people listed above know more than I do about their area of specialty.  I know Mary Ann better than any of them.  I pick her up when she faints or loses her balance.  I know when those problems come in relationship to how much medicine she has taken and when.  I have discovered that when the recommended treatment for her heart is put in place, her Parkinson’s is unmanagable.  I know that when she has some major intestinal activity there is likely to be some fainting and maybe a time of mental confusion.  I know that if there will be a test done that demands her lying still, we need to skip the dose of her main Parkinson’s Med (brand name Sinamet) or the test will almost be impossible to accomplish, because of the dyskinetic movement that is now a side effect of that medication.  I know about how long we have to get from one place to another before she is likely to faint.  

One of the somewhat unique characteristics of Parkinson’s is that there is not much that is consistent and predictable. Medicine may work or may not work on a given day or at a given dosing time.  She may be able to walk long distances without fainting or faint sitting in a chair or immediately on getting up.  She may be up a dozen times on the commode during the night, or just a couple of times.  She may be wobbly or steady, sleepy or restless.  Even the best specialist in the field knows that one regimen of meds may work for one person but not another. 

Your Medical Degree is in the Mail!  You as the Caregiver actually serve as the Primary Care Medical Practitioner.  You need to know what medicine is being given for what symptom(s) and what impact it will have on the others.  The clearest example of the problem of competing treatments came for us when the treatment for Mary Ann’s Congestive Heart Failure and Cardiac Heart Disease stood in direct opposition to the treatment for her Parkinson’s.  The diuretics and low salt diet lowered her blood pressure.   The Parkinson’s meds lowered her blood pressure also, and the progression of the Parkinson’s compromised her body’s ability to adjust quickly enough to keep blood pressure high enough to stand up and remain conscious. 

Let me put it this way.  One doctor said, no pizza and Pepsi, the other one said, yes, pizza and Pepsi.  One treatment was to keep from retaining fluids, making the heart work harder, the other treatment was to keep enough fluids in her body to keep her blood pressure from dropping suddenly.  At one point I inferred from what the Cardiologist that the side effects (the dyskinetic movements) of her main Parkinson’s meds was threatening her heart’s health.  We stopped the Parkinson’s Meds and she turned to stone. 

Caregivers are advocates for the quality of life of their chronically ill partner.  In our case, the doctors we regularly use now understand the narrow margin of functionality within which we live. 

I wonder how many of you who are primary Caregivers have taken your Loved One to the doctor, only to be ignored by the staff and maybe even the doctor, treated as an annoyance who should keep your questions to yourself.  I do not have enough fingers and toes to count the times, either in doctor’ offices or hospital rooms that I needed to explain to the medical staff some of the very basic dimensions of Parkinson’s, the way meds should be given and what the side effects will be. 

Caregivers are the Primary Medical Technicians for their Loved Ones.  Don’t get angry about it, just do it.  Learn everything you can about the disease.  Go to workshops and support groups, whether face to face or online.  Write down the questions and demand answers in terms that you can understand.  Ask what every medicine is supposed to do, what its side effects are and how it will impact other problems and the medicines being taken for them.  Advocate for the best quality of life you can obtain, even if you run into some attitude along the way. 

Like it or not,  you are the Team Leader.  No,  you are not a doctor, you do not have the breadth of knowledge and training, but you know your Loved One better than anyone else.  You are an expert on his or her disease and its impact on your lives.  You see the whole person, not just the separate systems and body parts. 

Our experience has been that any time we have encountered a medical professional who is good, very good, who knows the area well, he/she has always been open and inclusive, listened well and explained well.  Seek them out.  They will help you find the best quality possible for and your Loved One in your time together, however long that may be.

If you have a story to tell from your experiences with medical professionals, tell that story here.  It might help someone who happens to find her/his way to this site.

By the way, today’s news from the Cardiologist was good news.   There has been no measurable deterioration, nothing new in the last six months.   For the moment, we get to keep our current normal.  We can live with that!

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Comments are appreciated.

 

March 25, 2009

Caregivers/Receivers: What about Anger?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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Let me begin by telling you that I am not feeling angry at the moment.  This is not a chance for me to vent about my frustrations.  What I want to do is say what is obvious to those of us in Caregiving roles — as well as those receiving the care.  We get angry!

When we get angry we have to figure out what to do with those angry feelings.  While I would like it to be so, I am not always calm and rational and thoughtful and caring and sweet and loving — I had better stop before I lose my supper.  Mary Ann and I are not always sweet to each other.  Gratefully, neither of us expresses our anger physically.   We don’t call each other nasty names.   We do get angry. 

We have to figure out what to do with the anger so that it does not alienate us from one another or eat holes in our insides.  We don’t happen to be sweet talkers.  I appreciate those for whom sweet words come easily — when those words are genuine.  We are not cutesy-pie or sweet-cheeks or honey bunny sort of folks.  We didn’t use baby talk with our children — maybe a little with our Grandchildren, but that’s different!  We don’t use sweet talk with one another. 

Actually, I like that we say what we want to say to each other with words that sound genuine.  There is a trust that emerges that we are being straight with each other.  We try to be thoughtful in what we say without using words that sound like empty flattery.  We can both be pretty grumpy.  That is just the way we really are, sometimes grumpy, sometimes loving and kind and happy and content. 

When anger comes there are some elements of dealing with that anger that are unique to a caregiving and receiving relationship.  It just isn’t fair to express anger at someone who is sick, who has been battling Parkinson’s Disease for twenty-two years, who has had stolen from her every ability that brought her creative satisfaction, someone who depends on you for almost everything.   But where then can it go?  How can it be expressed.

Then, how can Mary Ann express her anger at me when moments later she has to depend on me to get her a sip of water or more importantly a dish of ice cream?  How can she risk alienating the one person who is there for her pretty much twenty-four hours a day?  Where then can the anger go, how can it be expressed.

If you haven’t discovered this for yourself, let me tell you something important about long and committed relationships.  They contain within them the capacity to be angry with one another, be grumpy, express it, and not threaten the relationship.   We trust each other enough to admit and express our anger. 

There are, of course, some rules.  No hitting!!! No name calling.  No damage to the furniture, doors or walls.  There may be an enthusiastic shutting of a door.  There may even be some yelling.  My children and those I taught in Confirmation Classes can testify that this little body can produce sounds audible from quite a distance, startling when heard at close range.   

There is an element in the expression of anger in a relationship that is not always appreciated.  Expressing anger appropriately in a relationship can strengthen it.  The operative word is “appropriately.”  Admitting that you are angry about something creates a vulnerability.  I can remember in our early years of marriage, Mary Ann once  saying to me, “I just wish you would get angry with me.”  By the way, she has lived to regret ever saying that. 

In her own way, she was asking me to be honest with her and reveal myself more openly, be more fully present with her.  She was asking me to trust her with my anger, trust her with what lay in my insides. 

Here is where that insight relates to our relationship as Caregiver/Receiver.  Were I to refuse to let her see any of my anger, it would signal to her that I thought her to be too sick, to debilitated to handle an honest relationship.  If I were to be sweet and nice and never grumpy with her, she would suspect that I had somehow lost respect for her strength. 

If Mary Ann were to become docile and compliant, never grumpy, always appreciating whatever I said or did, eating leftovers without complaint, never becoming impatient with me, it would signal to me the loss of someone who has been a force to be reckoned with, a strong presence, the person I have loved for all these years. 

We are not just Caregiver and Carereceiver, we are husband and wife!

What helps in managing the anger that comes is reflecting on it long enough (after the first reactive moments) to determine what it is that is the actual cause of the anger.  More often than not, what we are actually angry at is the insidious nature of Parkinson’s.  The ups and downs, the unpredictability, the inability to make plans and keep them, the relentless direction of this rollercoaster ride, combine to create frustrations that bubble up when some evidence of Parkinson’s presence pops up (sometimes as suddenly as Jack does when the little door of the box opens). 

I seem to have little ability to change this pattern, and I am frustrated by that inability.  When Mary Ann falls, which can be multiple times in a day, I get angry and grumpy about whatever it is that put her in the position of falling.  When I reflect on those reactive feelings, it becomes apparent to me what is actually happening.  I am scared.  We have been to the emergency room with blood that refuses to coagulate.  I know that head injuries are what most often finally take folks with Parkinson’s.  I am upset that I didn’t anticipate it and figure out how to prevent it.  I am frustrated that the very same medications that keep her able to function throw her into dyskinetic movements that compromise her balance, that the disease process combined with side effects of meds can cause her blood pressure to lower resulting in fainting.  I am angry that she doesn’t think about all that and avoid situations that make falling likely.  I am angry that the disease has slowed the thinking process making that kind of rational behavior difficult to maintain.  I am angry that she has always had a stubborn streak that, while it is keeping her alive, it is at the same time driving me crazy.   And then she wonders why I am angry at her when she falls since she isn’t the one who chose the Parkinson’s and brought all the challenges into our lives.  She isn’t doing it on purpose.

What about anger?  Well, admit it, name it, express it in ways that hurt no one, then think about it.  Use the energy it produces to find ways to deal with the problems that trigger it.  Don’t waste the anger.  Use it constructively.   Don’t let the Parkinson’s, the chronic illness, rule your feelings, your personal and emotional well-being.   Respect each other enough to be open and honest, vulnerable to one another.     Allow the chronic illness to become only an objective part of the landscape in which you live and grow and love. 

Yes, I would like to hear what you do with your anger.  I would like to hear what tools you use to manage it, release it, diminish its power.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Comments are appreciated.

 

March 24, 2009

Caregivers: What about the Kids?

Posted by PeterT under Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , |
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When Mary Ann was diagnosed with Parkinson’s Disease, our daughter was a Senior in High School and our Son was in the Eighth Grade at a school in which that was the last year.  I had gone on ahead in February to begin a new job in a city about a six hour drive away.  Mary Ann and the kids stayed at home to finish the school year while I lived in the new city without them.

It was a phone call.  “The doctor says that I have Parkinson’s Disease.”  In that moment  our lives ended as they had been and a new life began.  It has been a time of discovery for Lisa and Micah.  All of us needed to incorporate this new reality into our lives in different ways, as bits and pieces of understanding of its impact revealed themselves to each of us.  Our experiences have been completely different.  I could no more describe the feelings that Lisa and Micah have had than I could Mary Ann’s feelings.  They alone know the journey they have been on.  I know only what I have seen and heard when they were still at home, and what I have seen and heard of them in the years from then until now.  They are thirty-six and thirty-nine now – both married and along with very well-chosen spouses, raising our granddaughters. 

For you whose family has come to know the presence of chronic illness, make no assumptions about how that presence is impacting anyone else in your family, especially the kids.  It is tempting to project our adult awareness of all the implications of the disease on to our children.   It is tempting to try to insulate them from what we know of the truth.  It is tempting to lean on them and use them for support that they are neither ready nor able to give.  It is tempting to loosen boundaries on their behavior to compensate for the pain their parent’s chronic illness brings into their lives.  It is tempting to allow the chronic illness to draw attention away from them and their needs as they grow. 

Let’s just admit the simple truth.  Parkinson’s joined our family.  We didn’t invite it in.  We had nothing to say about it.  It became part of the family.  Two of the choices we had were to pretend it hadn’t moved in, or make it the center of our world.  I suppose we did some of both, each of us in different ratios of pretense and dominance.  One thing we did (I hope this is the way the kids remember it) is to just deal with whatever came as it came.  One side note is that as her Mom’s illness progressed, Lisa’s career choice of nursing home administration emerged.  She has since chosen to move to a very fulfilling job of the full-time parenting of her two young children. 

The Parkinson’s did impact the kids lives.  Again, they alone know how it affected them.  We tried to be honest about what we knew.  We tried to be rational in making choices about how to live most effectively in light of the Parkinson’s presence in our household.  We wanted our children to see that rational behavior helps in the long run.  We certainly did not spend a lot of time wringing our hands and feeling sorry for ourselves as if our lives had been stolen from us. 

Our children have come to be exactly what any reasonable parent could hope for them to be.  They are self-sufficient but able to be vulnerable, to care about others.  They are intelligent and mature.  Their advice is trustworthy.  They are of impeccable character.  They make friends easily and are true to them.  Others are better off for knowing them and will admit it.  While I understand that Mary Ann and I are biased in our assessment of them, I would bet money, real money, that others who have no such bias and who know them would say the same.

How did the Parkinson’s affect who they have become?  I can’t know this, but I think it has added depth of understanding, wisdom, compassion and a concern for others to a degree that might have come at least more slowly otherwise.  Each of them has found a life’s partner who matches their integrity, compassion, wisdom and concern for others. 

Those of us who deal with chronic illness in our families can feel sorry for the burden it places on our children.  I happen to have worked with Youth for eighteen of my forty years at my job.  While I cannot claim to have conducted a properly constructed study of Youth trends, I can say that those I got to know well, those who had the most, who were given the most, who had the easiest road, also had the most trouble finding their way to happy, meaningful, and fulfilling lives. 

What some might conclude to be an obstacle to a healthy childhood and a joyful life, I understand to have brought health and the capacity to experience deep and lasting joy that cannot easily be snuffed out by problems.

I have concrete evidence of the strength of character that has been shaped in our children by Mary Ann’s Parkinson’s.  Two years before I was able to seriously consider retiring to be a full-time Care Partner for Mary Ann, our Son-in-Law said to our daughter, Lisa, “why don’t we move to your Mom and Dad’s town to help them out for a couple of years until your Dad can retire?”  They lived in a city ten hours from here.  They had a two year old and a four year old.  There were no job guarantees here.  They just did it.    I have no idea how we would have done it without them.

Our Son and Daughter-in-Law moved from three hours away to one hour away.  They have never said what role, if any, our situation played in that decision.  But here they are, close by and ready to do anything within their power to help us.  Micah has come and stayed the night with his Mom.  He has done things no Son should be asked to do for his Mother.  He has done them without hesitation or complaint. 

Our love for our children, our purpose as parents to free them to live full and meaningful lives, shaping their own destiny, makes it hard to accept choices they have made to accommodate our needs.  They have taught us that part of who they are, who they have chosen to be, what they want their children to see in them, is their willingness to choose compassion and concern — actions, not just words. 

What about the kids?  The Parkinson’s, a chronic illness, has brought to them more than it has taken from them.   I say that so boldly, not because they have said it to me, but because their lives testify to it. 

My heart aches for so many who have not had the experience we have had, whose children and/or stepchildren have brought them pain beyond description.  How do you manage to survive in spite of their unwillingness to help and for some their willigness to hurt you?  How have your children dealt with the presence of chronic illness in your family?  How have they been hurt; how have they grown?

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Comments are appreciated.

 

March 23, 2009

Caregivers/Receivers Romance! (Rated PG45)

Posted by PeterT under Daily Challenges, Meaningful Caregiving | Tags: , , , , , , , , , , , , , , , , , , , |
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In last night’s post I said I would do it.  Tonight I will keep that promise, or threat, depending on your perspective.  As I said last night, this is rated PG45 since that number exceeds the ages of our Daughter, Son and their spouses.  As Daughter-in-Law Becky once said when I was only hinting at something that could move into the forbidden area of parents intimate activity — “Too much information!!” 

Since I am old and by some measures (probably most measures) a little stodgy, there is no need to fear too much information.  In saying that, I have, of course, lost all those curiosity seekers who ended up here in hopes of finding something titillating.  I am not sure this old ticker could handle much titillation.  With that said, we old folks still have young folks living inside of us. 

I remember sitting in a movie once, I think it was one of the Grumpy Old Men movies of some years ago.  There was a scene in which Walter Matthau and Ann-Margaret kissed — right on the lips.  Everyone in the theater who was under thirty groaned audibly.  From right behind us I heard at an “Oh gross!” 

I do have to admit that the thought of kissing Walter Matthau full on the mouth is hardly appetizing.  Then again, Ann-Margaret is another story.  What the young among us probably don’t understand is that we old people think other old people are cute, sometimes downright good-looking. 

What is at issue for Caregivers and Carereceivers is how to keep romance alive when meals are often interrupted by bathroom duties and waste management is a routine activity, when arms and legs and stomachs have grown or the skin on them gathered into wrinkles.  How is it possible to get excited about one another when one is tired and annoyed by having to do everything for the other, and the other is tired and annoyed at being followed around and scolded every time there is some behavior the other one doesn’t appreciate? 

Now comes the real problem.  I have just asked the question.  How the heck am I supposed to answer it???? 

Let me start this way.  Mary Ann and I are in our mid-sixties.  When I look at her, I see the cutie whose engagement picture hangs on the wall of our bedroom.  Forty-four years has not stolen from me the feelings that drew me to her.  I would not presume to speak for her.  In fact, I might actually prefer not having her speak to this issue.  I can remember the feelings I had before we met, fell in love and married.  I remember the profound loneliness of being a young single fellow who sometimes felt deeply sad, not sure why.  Once Mary Ann entered my life, never again did those lonely, deeply sad feelings return.  While I don’t fear death, I do fear the return of those feelings, should she leave before me. 

How do Caregivers and Receivers experience romance?  First of all, we do!  Understand, romance is not just about body parts and orgasms and ejaculations.  In fact, those whose understanding of romantic love centers on the biological act of intercourse, have no hope of ever experiencing romance.  By the way, old people actually do know about the biology of conception.   Some of us have had children.  While I happen to have been a pastor at the time and am familiar with the Biblical account of the Virgin Birth, we had our children the usual way. 

I have read many emails from those who are caring for a spouse who has ceased to be the person they married.  They have only memories to draw on for those romantic feelings.  How can they find a way to express their love.   If love was just about body parts and couplings, there would only be sadness left for many. 

The marvel of it is, love, romantic love, has depth and awe and wonder that is only hinted at when people first fall in love.   My favorite movie of all time is no secret to those who know me well.  It is “The Man from Snowy River.”  I don’t know what lies deep in the recesses of my psyche that draws me to it, but I can tell you what I recoginize about it that draws me.  They are simple things.  I love the photography, the scenery.  That movie is the reason one of my dreams has been to visit Australia.  The scenes of running horses will take your breath away.  There are two central themes that draw me to it.  One is the coming of age of a young man who proved himself in spite of the odds against him.  I suppose a 5′ 6″ kid with who had Rheumatic Fever and was not at all popular might understandably enjoy that sort of theme.  The other central theme is the romance that grows between Jim and Jessica.  It is beautiful and touching even to a guy not much into chick flicks.

In the sequel, “Man from Snowy River Two,” the ending is, as with every such story.  Maybe not in so many words, but the ending is, and they lived happily ever after.  “Happily ever after” is what romance is about.  The “ever after” in happily ever after lasts through smelly socks, passing gas, spitting up babies, rebellious teenagers, unsuccessful recipes, stupid comments, throwing up, diahrrea, tragic events, bad mistakes, arguments, hurt feelings.   The love that creates and sustains a relationship after riding off into the sunset can endure waste management, food that lands on the lap and on the floor, caring for bedsores, seeing that blank look of no recognition in the eyes of the object of that love, because of the dementia, hearing harsh and unloving words from the mouth that you kissed in former years. 

That isn’ t pretend love.  It isn’t some poor substitute for the rolling and grunting of biological coupling (which, by the way, is great fun).  It is something that is in its own way, beautiful and meaningful and romantic and intimate beyond anything that could have been imagined when lips touched in that first kiss decades before. 

I will say this much that is specific and personal.  Once or twice a week, I have the job of washing and drying Mary Ann’s hair.  (The Bath Aid does it twice a week also.)  Mary Ann has great hair for which she often gets complements.  While the Parkinson’s has taken much from us, washing Mary Ann’s hair brings wonderful feelings of intimacy.  It is tactile and gentle and relaxing and warming.  Running my fingers through her hair as I dry it is my experience of “happily ever after.”   The other day, Mary Ann gave me a kiss on the neck as I was bent down pulling up the disposable underwear after using the commode.  (Too much information?)  Strangely, in a way, the Parkinson’s has brought more intimacy than it has taken away. 

I would like to think that  Jim and Jessica will grow old together — that their love will grow until they know what it is really like to live happily ever after.

Those of you who are in the throes of caring for a spouse whose chronic illness creates barriers in your relationship, I guess I would like to know what brings real romance into your lives.  How do you cope? 

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Comments are appreciated.

 

March 22, 2009

Caregivers: What about Death?

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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?

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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?

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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?

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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 17, 2009

Caregiver/Receiver Denial is Underrated!

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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.

 

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