“How long do you intend to keep caring for Mary Ann at home?” he asked.  “Until I can’t handle it any more.” I answered.  Then the hardest of all, “How will you know when that time has come?”

Since we live in a world of denial that provides us the emotional and psychic room to live each day without constant dread, those questions are not often asked and answered.  First of all, I don’t know the answer.  I have intentions about how I intend for this story to end, but I have no answers to questions about how the future will actually play out.

Two days ago I was asked those questions with which I began this post.  Today I experienced to some degree elements of the answer I gave.  As I have said in earlier posts, my intention is for the two of us to stay together here at the house at least until one of us dies.  My intention is to use as many resources as I can locate and afford to help make that possible.  That intention is not just an intellectual decision about how I intend to proceed.  That intention lives in insides.

With that said, I had to answer the question rationally.  I intend for Mary Ann and me to be together here at the house until I can’t handle it any more.  The question that has to be addressed, the hard question is, how will I know when I can’t handle it any more.  I stumbled around some as I tried to answer that hard question.  The two things that came to mind are hallucinations that get out of hand and grow into a steady stream, and the inability to get any sleep.  The two are related.

Today was an example of those two problems converging.  Last night Mary Ann was up multiple times, as many as a half dozen in an hour.  Almost every one of those times, there were people, or raccoons or other visual images not actually present outside of her mind.  The lack of sleep during the night meant that the hallucinations came in a constant stream this morning when she got up.  She asked if we were the only ones in the house, implying that she thought we were not the only ones.

By the way, yesterday, as she was eating the last piece of strawberry-rhubarb pie with ice cream (pie she had eaten with great enthusiasm for the two days before), she decided that the filling in this last piece of pie had somehow changed into tomato sauce. She ate the ice cream, but left most of the huge piece of pie. I am afraid of the day when I can’t get her to eat enough food because of what her mind is seeing.

Today, she grabbed the bedspread as I was folding it at the foot of the bed preparing for her nap.  She said there was a sheet of stamps or stickers stuck to it.  The bedspread was right in front of our eyes, she had her hand on it, convinced that she was pulling off what was stuck on it.  She told me to turn on the bright lights on the ceiling fan over the bed so that I could see the sheet of stamps.  When the light went on, she reluctantly admitted that they were not there. On the way to the bedroom tonight, she stopped and told me to get rid of “that” and then stepped over something that was not there on the floor in front of her.

This morning, when the hallucinations were at their steadiest, Mary Ann simply could not sit down for more than a minute or some fraction thereof.  She would jump up to go to one spot or another to get a good look at or pick up whatever it was she saw.  I had to jump up every minute or fraction thereof to grab hold of her gait belt so that she did not fall.  Once she was so dyskinetic when she jumped up that it was all I could do to untangle her feet and help her sit back down before she fell into a couple of tables next to her.  The activity was so steady that I could do nothing but follow her from one hallucination to another, or one task she had in her mind to do, pretty much always losing track of whatever it was by the time we got wherever she was leading me.

If hallucinations came at that pace constantly, I would soon be completely unable to cope.  The lack of sleep impacts both of us.  The less she sleeps at night, the more she hallucinates, the stronger and more vivid and more frequent they become.  The less she sleeps, the less I sleep.  The less I sleep, the less able I am to cope with the hallucinations.  They compound one another, lack of sleep and hallucinations, and my capacity to cope.

Here is how my inability to cope expressed itself this morning.  I told Mary Ann that I had been asked about how long I could keep her at home.  I told her that my answer included two things that could make it impossible, lack of sleep and streaming hallucinations like the ones that we were dealing with this morning.  It was cruel to say that to her.  I have no excuse.  My frustrating inability to cope with the constant following her to one thing and then another, after having a very poor excuse for a night’s sleep was the context, but I chose to say those harsh words. She has Parkinson’s Disease Dementia!  She didn’t choose the disease!  She didn’t choose the hallucinations!  She didn’t choose the frustrating behavior!

I guess there was a part of me that hoped the words would get through to the healthy part of her mind that has some ability to control her actions.  What she said next, broke my heart.  “Then what would happen to me?”  Usually, whatever I say just bounces off with no reaction.  This time it broke through.

I need say just how hard it was to actually write for all to see those last paragraphs revealing what I said to her.  I am ashamed and embarrassed.  I can only hope that someone reading this post has been there and said things of which you are not proud also.  I have chosen to face my own flaws head on without pretense, since it is just too hard to pretend to be someone I am not. My hope is that facing the flaws head on, will allow me to grow into someone better able to cope, a better Caregiver.

In answer to Mary Ann’s question about what would happen to her, I immediately told her of my intention for us to stay here together until one of us dies.  I told her I would use paid help here at the house to help do the care when I could not handle it by myself.  I told her that if I die first the kids would take care of her, keeping her close to them.

All I wanted to do was to get her to stop hopping up, responding to the various things she saw. She did stop hopping up, and I was able to get my shower done, make the beds, write an email or two and finish getting her ready for the Public Health Nurse’s visit.  I don’t know if what I said had any impact in that change in behavior, but even if it did, I feel no less guilty about being so harsh.

It is at times like this that I am very grateful to have a God who has openly addressed our flaws and stolen from them the power to ward off the Lord’s love of us.  That is why the song is called “Amazing Grace.”  The power of that gracious love is transformational.  It frees us to face our failures.  At the same time it challenges us to grow and change, cradled in the arms of that love.

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.

Advertisements

This morning I had a chance to go up to favorite spot I like to visit when there is a Sunday morning Volunteer.  (By the way, those who worry that we might not be getting to church, we attend the evening service on Sundays.)  I relish the chance for a little time to do some meditative reading, have some quiet time, and soak in the scenery and the wildlife, especially the birds.  I walked along the edge of a marsh below the dam, as I often do when I head up to the lake.  There are some Red-Winged Blackbirds that send out alarms and do fly-overs every time I take that path.  I am not sure what they think I am going to do, but they are determined that whatever it is, I don’t do it.

Something I wrote in my post yesterday came to mind as I spent the time away this morning.  Yesterday, I listed some of the things that I am not doing, options I have given up on for the moment, as we are living the life we have at the moment.  As I thought about that, I began to wonder if in the course of letting go of those options, I am also cutting back too much on what Mary Ann and I try to do to add interest to our lives.

While I have posted often with attitude, attitude that left the impression we will tackle anything, the truth is, I am often reluctant to push the envelop of our apparent limitations.

The disincentives that come with going out of the house to do much of anything seem pretty powerful.  I am afraid that sometimes I give those disincentives more power than they deserve.  It is so much easier to just go with the flow and do as little as possible that challenges us than it is to do the work of getting out.  I have to admit to just plain laziness.

Sometimes Mary Ann doesn’t want to tackle going out and needs for me to be more assertive.  Sometimes Mary Ann seems oblivious to the all the challenges and wants to go and do something, but I am the one that thinks of all the reasons not to do it. Sometimes it is just a matter of being tired because we have had a rough night, as in the night before last.

I don’t want Mary Ann to miss out on activities we are still able to do that may no longer be possible for us to do in the not too distant future.  At the same time, we both have to accept that one of the consequences of the Parkinon’s presence in our lives is that I need to do more of the work for both of us when we go out and participate in activities.  We cannot void those consequences and live the life we might have had if the Parkinson’s had not joined us.

Just as I have to accept what I need to do for Mary Ann to have a decent quality of life, Mary Ann has to accept that I have limited stamina and, frankly, have a lazy streak in me.  Not only do we need to live the life we have, not the one we wish we had, but we have to accept the spouse we have, not the one we would like him/her to be.   Otherwise we will always be disappointed with one another.

I won’t presume to speak for Mary Ann, but I have the spouse I want.  I accept and embrace all that comes with our life together.  In spite of the presence of the Parkinson’s in our lives, I want Mary Ann to have the best quality of life she can have.  I need to be careful not to be too cautious so that we do have the most fulfilling life we can given our circumstances.  At the same time, we need to accept each other’s limitations and imperfections, and not spend our time upset about what we are missing.  Our time is too precious to waste on regrets.

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.

As a retired Pastor, I can’t tell you how many times I heard someone say to me that they had no use for churches since church folks are a bunch of hypocrites.   It is certainly true, churches are full of hypocrites, but so is every other place that has people in it.  I am here to suggest that being a hypocrite isn’t necessarily all bad. 

This post is not about churches, it is about Caregivers.  I am convinced that the only way to be an effective Caregiver is to be a hypocrite. 

First of all, there is certainly hypocrisy that is unhealthy.  Debilitating  hypocrisy is the creation of a false image of yourself.  It is the pretense that you are something you are not.  That sort of hypocrisy gets in the way of honest communication.  It hinders growth.  It promotes a kind of denial that blocks the ability to see the truth. 

I have what seems to me to be a fairly realistic view of people.  I expect people to act in their own interest.  As a result, I am often suspect when someone presents himself or herself as a wonderful, selfless, noble bearer of goodness, caring only for the welfare of others.  Let me add immediately that while I am suspect, I do not rule out the possibility that some are exactly that self-giving and noble.  I just don’t expect it.  Most of us are not. 

Those of us who are Caregivers have probably heard others wonder out loud how we do it.  Sometimes we are embarrassed by people affirming our goodness.  I think it is a good thing to accept those words of affirmation, and appreciate that we may very well be doing a good thing.  The problem comes when we begin to believe that we are just plain wonderful and noble.  The problem comes when we allow a false image of ourselves to develop.  That is a kind of hypocrisy that is destructive.  It hinders growth because it is not real.

Caregivers care about ourselves.  There is self-interest folded into our caregiving.  I guess I need to speak for myself rather than for all Caregivers.  The rest of you are probably more noble than am I.  I love Mary Ann.  It makes me feel good to take care of her.  I get more out of it than she does.  I want other people to respect me.  I care about my image with others.  There is a self-serving element to what I do to care for Mary Ann.  I find meaning in doing the care.  I want to have meaning in my life.  This task offers me the opportunity to find that meaning. 

Then there is the harsh truth that I am not always very nice.  I get grumpy.  I sometimes say things that do not build her up but rather simply vent my frustrations.  There will come a post at a later time on Caregiver’s guilt.  In the matter of hypocrisy, it is far healthier to be painfully honest with ourselves as Caregivers, without creating some false image of who we are and what we are doing.

Then what on earth can be good about hypocrisy when caring for someone else who needs your help?  The etymology of the word is helpful.  It has to do with actors and acting.  If I remember correctly from all those years of Greek, the word’s roots are in the use of masks in the pretense of acting.  How can acting be a good thing when caring for someone who needs your care? 

Good hypocrisy is acting in a way that is good and caring and loving and kind, even when you don’t feel good and caring and loving and kind.  Good hypocrisy is not waiting until your insides are spontaneously producing good behavior but instead, just going ahead and doing the good behavior. 

If I were to wait until I am pure and good and wonderful and noble before doing good things for Mary Ann, there would not be very many good things done.  Good hypocrisy is refusing to allow grumpiness and resentment and frustration to decide every behavior.  Good hypocrisy is choosing good when you don’t feel like being good. 

It is very tempting to use the respected trait of honesty as excuse for bad behavior.  “I was just being honest with you when I said those harsh words!”  “It would be hypocritical of me to be kind to you when I don’t feel like it!”

When counseling with couples about to be married, one of the things that seemed to me to be important to say concerned the nature of commitment, duty to one another.    My counsel was to treat each other in a loving and caring and affirming way during those times in their marriage when they did not like each other.   I was convinced that unless they learned to do that, a marriage of any length was unlikely.  The good news is that when they got through one of those times in their relationship, their relationship would be stronger than ever, stronger than it could have been without going through that time.  Mary Ann and I have been married well over forty-three years now.   We have had a pretty normal life together.  There have been times we were enthralled with each other and times we didn’t much like each other.  We chose to love each other anyway (one of our favorite phrases).

The wonder of it is that when we choose good behavior in our caregiving even when we don’t feel like it, we can actually be changed by the good behavior we have chosen.   Just as good behavior can emerge from good feelings, good feelings can emerge from good behavior. 

Maybe hypocrisy isn’t always a bad thing.  Being honest enough to admit to ourselves our selfish motives and unloving feelings frees us to face them down and refuse to let them rule.  Having the courage to be good when we don’t feel like being good allows us to grow into more than we could have been otherwise. 

It seems to me that good health for Caregivers demands enough honesty to face the reality of our own selfish motives and resentments and less than noble thoughts.  Healthy caregiving demands the courage to face all that and still do the right thing, still act with kindness and concern and gentleness.

Maybe a little hypocrisy can be a good thing. 

 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.