The Caregiver Calling

Why did I talk so much about the mother raccoon and her two babies that visited our deck the other night???  I should have known better.  For the last hour Mary Ann has been seeing a baby raccoon or two under the bed, on the side of the bed, in the bed all around her.  It may be a very long night.

Last night was not a good one.  It was very late before she finally settled.  It pretty much never fails that the day after a difficult night, the hallucinations ramp up in activity.

I feel pretty helpless when this happens.  There is nothing I can say to convince her that they aren’t there.  I know the rule is not to tell the person seeing the hallucinations that they aren’t real.  I have searched for them in the covers and under the bed and around her back as she lay in bed, assuring her that they are not there.  If I agree that they are there, there is no hope of her getting any sleep.  I am watching her on the monitor and will head in to reassure her whenever she appears to be bothered by the….whoops, there she goes.

When I got to the bedroom, she asked if the people (there were no people) had left yet, used the commode, while she holding the corner of the sheet she said she hated the fabric hanging there, she got back into bed and told me she was going to send the raccoons over to my bed.  I encouraged her to do so…back to the bedroom again.  This time a Tums was needed.

I have read hundreds of posts from those in the Lewy Body Dementia Spouses group.  It is pretty unsettling to read how many who have LBD (Mary Ann’s Parkinson’s Disease Dementia is a dementia with Lewy Bodies) have a much worse problem with hallucinations.  I don’t relish the time when her hallucinations become worse and more constant, assuming that happens.  Given recent experience, it appears likely that it will happen.

If these hallucinations don’t subside in a couple of days, I will phone the Neurologist to see about increasing the Seroquel.  There are some scary risks that come with Seroquel, but so far she has not had problems with it.

For tonight’s challenge, I am heading off to bed early to see if my presence will help. She has been quiet for a while.  Hopefully she will get a good night’s sleep.  Tomorrow is another day.  Maybe the raccoons will have left the bedroom and returned to the deck.

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.

We were sitting on the deck with Don and Edie, who had called and offered to bring supper over — we accepted and invited them to stay and eat with us.  I was making a point about something, but I had one of those lapses, when I couldn’t think of the right word to complete my sentence.  Mary Ann finished my sentence by adding the word.  This is the same Mary Ann who has had Parkinson’s for twenty-two years, who has been diagnosed with Parkinson’s Disease Dementia and can hardly get an audible word out of her mouth.

Exactly who is it in this household who has memory problems? I certainly hope other Caregivers sometimes struggle with memory problems.  I would hate to think I am the only one.

A few weeks ago I was trying to remember the birthday of one of my brothers.  I knew it was sometime in the end of May and that my Sister-in-Law has a birthday near his.  I asked Mary Ann in one of those times when I was not anticipating an answer from her.  She said May 25th.  I assumed, since she has Dementia, I could not accept that as the final answer.  I called one of my Sisters.  Dick’s birthday is May 25th.

Why is it that sometimes Mary Ann’s memory is better than mine, and she is the one diagnosed with Dementia.  I wonder how many other Caregivers sometimes worry at just how often we forget stuff.  When the Caseworker comes by for the annual assessment visit, at a certain point he always gives her four words and asks her to remember them so that she can list them when he asks her again.  I am so grateful that he doesn’t ask me to repeat those words later in the conversation.  Of course I repeat the four words in my mind the entire time he is asking her other quesitons so that I can feel superior when I remember all four and she only gets two or three of them. If I had been forced to pay attention to the questions he was asking after listing the words I would not have had any hope of remembering the four words.

I recognize that stress can impact a person’s capacity to remember things.  I have used that rationalization a thousand times.  I understand that memory loss due to attention problems is a normal part of aging.  There is a unique character to the memory loss that is the result of Dementia, but I have forgotten what it is.

Actually, I just cheated and checked online to see if I could find something to help distinguish the normal memory loss due to aging and the memory loss that comes with dementia.  Forgetting how to do things that you have been doing for years is one.  Forgetting how to get someplace you have gone to often is another.  No longer being able to follow things that are done in steps, such as following a recipe is another.

One of the reasons that I have developed so many routines is that routines help me get things done that might be forgotten if the routine didn’t automatically lead me to do them.  I turn the medicine bottle upside down when I take my daily Synthroid so that I won’t take it a second time thinking I hadn’t yet done it.  I alway use the remote to lock the doors on the car rather than the button on the inside of the door.  That way I am far less likely to lock my keys in the car.  I have to have the fob in hand to lock them.  Of course, I keep a list of all the things I need to do.  If a new item comes to mind, I have to write it on the list immediately.

I guess I cannot know for sure if my memory loss is normal.  I think it is within a normal range.  I hope so!

I don’t think I am the only Caregiver who wonders sometimes if he/she is suffering from serious memory loss.  As Caregivers, we can see how devastating dementia can be.  When we can’t remember things, sometimes it scares us.  If we have a problem, who will care for our Loved One?

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.

…and baby makes three!  Actually, it is Mom and two babies.  One raccoon is sort of a novelty.  Three raccoons is two over quota.  The young’uns are not all that well behaved either.  The banging at 3:30am turned out to be one of the babies knocking a ceramic pot holding an asparagus fern off the old wooden box it was sitting on.

After watching them for a while, I decided it was time to get them off the deck before the kids did any more damage.  I turned the deck light on and off a few times to scare them off.  Not one of them even flinched.  Mom and one of the youngsters kept eating what the squirrels had left in the pan of oil type sunflower seeds I provide to keep the squirrels attention away from the bird feeders.  The other youngster, I suspect, is the problem child.  He/she messed around some more and then finally left a while after the other two had headed off and under the deck.

The lights in the waterfall are now in, and as a result nighttime deck therapy is an  option.  Each of the four levels has a light at its base. The light is invisible until the timer turns it on.  Neighbors Tom and Amy and I sat on the deck for a while and talked, just enjoying the sound and sight of it.

What makes sitting on the deck possible is that the little seven inch screen on the A-V monitor keeps Mary Ann in view.  I can see when she starts moving and needs my help.  Without the monitor, I would need to head into the house every few minutes to be sure she didn’t need something.  This way I only have go when she actually needs me.  I have now ordered a second camera so that both the bedroom and living room can be seen by just moving the channel switch from A to B.  Again, the screen and audio-visual monitor is a Summer 2500 available at Babies R Us.

Mary Ann and I headed into Kansas City to spend time this afternoon with friends we have known since the early 1970’s.  The time there is always refreshing.  One couple in our crew, like us, is a caregiver/receiver couple.  Marlene has ALS. Charlie has retired (mostly) and is now a full-time Caregiver.  He is the one who sent me a beautifully written email when I first revealed my decision to retire and spend full time helping Mary Ann with her needs. In the email Charlie told me what an honor it is to be able to have the role of Caregiver.

As always, we enjoyed the time together.  There is no self-consciousness to distract from the relaxed friendship.  Whatever special needs Mary Ann has are just taken for granted.  Charlie and Marlene often have helpful suggestions.  There are ramps into the house and on to their deck.  The arrangement of furniture allows space for wheel chair movement.  Marlene uses a motorized wheelchair.

We returned home, and I have managed a few minutes on the deck with Mary Ann securely in bed.  Having just fallen asleep for a moment at the keyboard, i think it is time to post this draft and get to bed.

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.

Almost done!  The four level waterfall needs only the one watt light fixtures that produce twenty watts of light at the base of each of the four levels.  They will be installed tomorrow.  

The plants are now all in place.  Brad even brought some from his own yard to put in an area above the lined portion, his gift to us.  His Dad has Parkinson’s and we have come to know his parents at the Parkinson’s Support Group meetings.  Brad has put forth extra effort at every turn.  The end result is more than Mary Ann and I could have hoped for. 

The Mallards are now in duck heaven – our back yard.  They were hanging out there last evening and came today five minutes after Brad and his crew left. 

I also hung out on the deck last evening listening to the waterfall as rain and thunder and lightening came through.   While it was raining I sat on the portion of the deck that is covered with a section of the roof.  The wind cooled the air so that the experience was wonderful. 

Mary Ann and I spent some time this morning on the deck before the day heated up.  I got her out to a lawn chair to sit for a while.  Then she got up and walked to the rail to get a better look at the waterfall.  As she started to faint, I tried to pull a chair over behind her.  It didn’t work.  I let her down to the deck.  As she lay there, I went into the house and got the transfer chair so that I would eventually be able to get her into the house.  During the morning, before, and then out on the deck she had had some small fainting spells.  The one at the rail was a substantial one, one that turns into a sort of siezure.  As usual, there was some intestinal activity that followed.  Some time I intend to ask our Gastroenterologist for an explanation of that phenomenon. 

Last night, the third in a row, Mary Ann had trouble settling down and getting to sleep.  As expected, the hallucinations have been a little more active the past few days.

The reason I titled this post “Caregiver needs Deck Therapy” is that today was a pop up day.  Most of the times I went out to talk with Brad and the crew about something, I very specifically asked Mary Ann to stay seated while I was outside.  Of course I made sure that she had ice water, the television was tuned to something she liked, and that she didn’t need to get to the bathroom.  For the most part she did as I asked during those times. 

Other than that, Mary Ann popped up every few minutes.  When I answered the phone or made a phone call, she was up.  When I went into the kitchen to put things in the dishwasher she popped up.  When I tried to get food ready for her she popped up.  When I went to the bathroom she popped up.  It seemed that pretty much every time I sat down she popped up. 

As I have shared many times, falling is a major issue.  The fact that this was also a fainting day made it even more challenging.  Last I heard, aspirating food and falling are the two most likely events to end the life of someone with Parkinson’s.  People don’t die of Parkinson’s itself.   Mary Ann was falling generally more than once a day until the torn stitches a few weeks ago.  Since then she has fallen very seldom, at least by the pre-stitch-tearing measure. 

I realized today the reason the falls have diminished so much.  I am moving very quickly to be right there whenever she stands up to walk.  I offer my elbow for her to hold, thereby stabilizing herself while walking, or I put my hand gently on the gait belt she always wears so that I can help her regain her equilibrium if she gets off balance.  The A-V monitor helps me anticipate her getting up so that I can be there by the time she is up. 

The challenge is that I can’t keep her in view every moment.  The monitor has to be plugged in and within view for me to use it.  I can’t move it with me every time I walk into the other room, head down the hall just for a moment, or go to the bathroom.  At the first sound of movement, I move as fast as I can, sometimes even managing to get this sixty-six year old body to run, to get where she is before she falls. 

Today, I must have jumped and run thirty or forty times.  That is only a guess; it may have been a thousand times!  While as her Caregiver I should just take that in stride, if every day were like today, I am not sure I could do it.  Not long ago I used the metaphor of a marionette whose strings were being pulled by someone else as a  way to describe the feelings of being a full time Caregiver.  That was the sensation today.  She popped up and my arms and legs moved. 

I needed some time on the deck this evening.  The residual heat from the day made it much less bearable than last evening.  That respite and this post are my way of settling down and allowing the frustration to dissipate.  I understand that Mary Ann’s popping up is not a malicious attempt at making my life difficult.  In her mind it has nothing to do with me.  It is my problem that I come running when she gets up.  I suppose, if that is what she is thinking, she is right.  Nonetheless, the truth is, I need to keep her from falling to the degree it is possible not only to keep her safe but to keep my life from becoming more difficult.  If she hurts herself, it hurts both of us.  And, yes, while in my most rational moments I recognize that the disease is the cause of this annoying behavior, sometimes it feels as if she doesn’t care what impact her actions have on me. 

Today is done.  There have been many good moments along with the frustrating ones.  I celebrate the new retreat center behind our house.  I suspect that there will be need for some Deck Therapy tomorrow.  Then there will be lights!

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 they swung the pickaxe and wielded shovels trying to dig through the huge roots of a Bald Cypress Tree and the rock hard Kansas clay just below the roots, the heat index reached 111 degrees yesterday.  Three young men sweated and strained, pulling up water soaked sod to get to the roots and the clay. 

In this heat and at my age, it seems much better to watch others work than to join in the digging.  Today the work continued with more digging, with the addition of the job of bringing huge rocks from the truck in the street in front of the house to the back where they now lay until they find their way to their permanent place in what will be a waterfall, a pondless waterfall.  

They had a little walk-behind Bobcat to move the rocks, but the rocks had to be loaded into the bucket and carried from it.  The well is dug, the liner laid out.  Tomorrow the pump will be installed, the filter filled, the rocks arranged, and later, maybe the next day, the native plants put in place. 

There will then be a waterfall flowing into a manmade wetland to provide an aesthetically pleasing solution (hopefully) to an ugly problem with standing water fed by regularly cycling sump pumps of three houses, ours being the middle one.   

We have committed substantial personal resources to this project.  I cannot be sure that the days and weeks and months will confirm it, but my expectation is that the setting on our deck become more of a sanctuary than it already is. 

This little place where we live is our world most of the time.  We are not completely homebound, but we spend the vast majority of our days here.  To put it bluntly, my goal is to keep from going crazy.  I will do Mary Ann no good if I lose my bearings.  The spiritual grounding that provides me with stability is the primary source of equilibrium.  That grounding needs to be sustained.  We have been through enough to confirm that I am not invincible.  It would be stupid of me to think so.  No human is. 

I recognize the need to have times of respite to help keep balanced and maintain the ability to care for Mary Ann’s needs in a way that nurtures her as a whole, complex, vibrant somebody who happens to have Parkinson’s.  I need the respite to be husband rather than a grumpy and reluctant care provider.  

Mary Ann and I are more grateful than we can ever say for the Volunteers and Mary who schedules them.  We recognize Mary to be a very special gift from God to our household.  The Volunteers give both of us time away from each other.  That time away makes our time together better. 

Tonight, Mary Ann enjoyed the company of good friend Barb.  While Barb was with Mary Ann, I ran some errands and spent time in my favorite close by place of respite.  There I encountered the doe that has been there the last few times.  The two wild turkeys returned to feed for a bit.  The view was as good as ever.  The humidity in the air created layers of mist with varying density, giving depth to the plains that extended for miles in front of me.  I encountered a nice young man there, watering some new plantings.  He is the realtor, excited about the open house coming this weekend, an open  house with the purpose of seeking folks to buy the twenty-eight lots that will be filled with homes, thereby eliminating that place of respite. 

For me to be a good care partner to Mary Ann, there need to be accessible places of retreat and respite, places I can be while we are at home together and there is no Volunteer available.  My office with the computer and the worship center is a place of respite.  The A-V monitor allows me to be here while Mary Ann is in bed or in her transfer chair in the living room. 

The deck can be such a respite with a little planning.  It is possible to plug  the monitor into an outlet on the deck.  My hope is that the addition of the waterfall will increase the power of that setting in providing renewal and refreshment.  Without the need to have a Volunteer scheduled so that I can drive to some other place for respite, our little corner of the world can provide more of what is needed to keep our system healthy and functional. 

Meaningful Caregiving will not happen by accident.  Sometimes it takes pickaxes and shovels wielded in 111 degree heat index weather to help create what is needed to nurture the spirit and sustain mental stability so that meaning can be found day after day in the tasks of caring for someone loved deeply. 

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Author Sandra Tsing Loh has now declared marriage to be obsolete.  She and her husband of twenty years both had affairs and are divorcing.  She has concluded that marriage is simply obsolete these days.  It was useful in the agrarian culture up until early in the 1900’s, since many hands were needed on the farm.  Marriage is no longer useful.  Studies of primitive humans reveal that the spark in a relationship is programmed to last about four years, long enough to have two babies up and out.

I am tempted to get on a soap box and with great self-righteousness rant against such silliness.  That would be far too easy.  I have counseled couples through some very tough times over the years.  Some worked through their problems and found a new relationship that had more resilience and strength an intimacy than before they struggled through whatever it was.  Some concluded that they needed to divorce and begin new lives.  There were money problems, affairs, trust issues, problems with alcohol misuse, abusive behavior.

I respect those who worked out their relationship, and I respect those who chose to divorce and begin new lives.  Does that sound unpastor-like?  Divorce is among the most painful experiences anyone can have judging from what people shared with me over the years.  It is frightening how many killings are done by estranged spouses.  When I moved to Oklahoma City five months ahead of Mary Ann and our children, who were finishing the school year, I was standing just inside the door of a Skaggs Drug Store returning a faulty alarm clock I had gotten the day before.   As I was standing at the counter, someone ran in and hid behind the counter where I was standing.  When the doors opened, I smelled the gun powder.  Fifty feet away from me, outside the door of the store, an estranged husband shot his ex-wife in the face.  After a time, I went out the door to leave and walked by the paramedics with her.  She died there in that spot.  The ex-husband was found at Lake Overholser about a mile and a half away.  He had taken his own life.

Having seen the level of pain that comes with it, I no longer judge those who have chosen the path of divorce.  Those who have experienced divorce are unlikely to recommend it as something to be sought after.

With that said, most of those who divorce do not then conclude that marriage is obsolete.  Apparently, almost 90% of those who divorce choose to remarry.  It appears that we are wired to marry.  I realize that sounds ridiculously obvious, but apparently it is not obvious to some.

Assuming that in our primitive brain the spark that brings a man and a woman together has a four year shelf life, the conclusion implicit in the author’s contention that marriage is obsolete is that there is no point it staying together once the spark has expired.  In fairness, I think she would say that it is no longer sensible to try to recreate the spark after many years of marriage.

I guess the author’s conclusion might be reasonable if the spark were all there is to marriage.  To use her metaphor, a spark is what gets the fire going.  It would be pretty hard to weather a cold winter if the heating system in the house never had more than a spark.

If we chose to live only by what lay in our primitive brain, the fight or flight impulse would preclude the possibility of living in peace with other human beings, at least other than those in our tribe.  What makes us human is the capacity to use our frontal lobes to reason out a better way to live.

If we chose never to move from the spark to that which the spark ignites, of course marriage would become obsolete. What the spark ignites is relationship.  The spark ignites feelings that grow into actions that produce newly discovered feelings that spark levels of trust and intimacy that could never be experienced if the spark were to remain the only measure of the value of marriage.

The spark needs to be in contact with some sort of combustible material or it will produce absolutely nothing but a tiny burst of light and heat lasting only a fraction of a second.  The combustible material is made up of promises and commitments that are lived out day by day in big ways and little ways.  The combustible material is not romantic gestures (although there is a lot to be said for them).  The combustible material is made up of time spent listening to one another, arguing with one another, forgiving one another, standing up to one another and giving in to one another.

Long marriages provide the possibility of a kind of relationship with a beauty and depth, that is far beyond the spark that brings couples together in the first place.  People who have not chosen to marry or are divorced or widowed, can also find deep and lasting relationships that grow out of the combustible material in their relationships with those who are closest to them.  Marriage, however, is certainly not obsolete as a meaningful and fulfilling way to live for as many years as life allows.

For Mary Ann and me, marriage is hardly obsolete.  It is what allows us survive in difficult circumstances.  We get to experience relationship that is deep enough to weather irritations and frustrations and misunderstandings without any of it stealing the fire from us.

When in the Seminary training to be come a pastor, I was in a choir that sang Bach’s St. John Passion three times over four years.  The third time we sang it was one of the most powerful experiences I have ever had in my life.  I will never forget singing the chorale at the conclusion of the Passion.  The power of that chorale lay in what had gone before.  Each aria and recitative and chorus sung over almost an hour built one on the last until all that had gone before filled the last chorale with overwhelming joy, more deeply moving than there are words to describe.  Without what had gone before, the chorale would have been a beautiful hymn.  With what led up to it, the experience touches me to this day, forty years later.

No, Ms. Sandra Tsing Loh, marriage is not obsolete.  For me, our marriage, now, after forty-three years is the chorale at the end of the something that has been building in strength and power for all these years.  The spark has ignited something enduring and of great beauty.

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Music seems to crack open my mind and heart in ways that most anything else cannot.  It is a good thing when it happens.  Needless to say for those who have read this blog, my mode of operation for handling stressful situations is to think my way through them.  I put words together in my mind that frame whatever it is in an intellectual structure that makes it seem more manageable to me. Music seems to dismantle my neatly formed defensive structures and feeling overcomes thinking for a time.

Tonight I listened to music for about an hour and a half, a couple of CD’s.  One was done by a composer named Marty Haugen.  He writes liturgical music. Much of what he writes has a simplicity and a melodic style that is quite disarming.  In my last couple of decades in the ministry, Marty Haugen’s music often found its way into worship services.  The other CD was one in the Celtic Woman series.  My defenses are of absolutely no use in the face of the crystal clear sweetness of those lovely voices.

In her comment on last night’s post, Sharon touched on the one thing that puts into perspective all that we struggle with as full time Caregivers of our spouses.  The time we have with our spouses is of great value against the backdrop of what is coming.  There is no predicting the future.  I may die before Mary Ann.  For most of us in this stage of caregiving, the likelihood is that we will outlive our chronically Ill spouses.

The music tonight cracked open my heart and mind, and that likelihood surfaced.

I spent almost forty years in the business of helping people through times of grieving someone they loved who had died.  I have done more funerals than I can count.  I have buried people of all ages and circumstances from those who died in the womb to those who lived to within days of a hundred years old.  I have buried people who died accidental deaths and people who suffered a violent death at the hands of a perpetrator.  I have buried people who battled long and hard some form of Cancer before they died.  I have buried one of my best friends.  I preached at the funerals of two of Mary Ann’s brothers who died of Cancer, each at the age of fifty-one.  I preached at the Memorial Service for Mary Ann’s Mother.  I preached at my own Mother’s funeral. I know how to do a funeral and how to counsel people in preparation for the funeral and how to minister to them as they grieve afterward.

Tonight, broken open by the music, my thoughts and feelings went to a place of great pain. Just for a moment, I imagined myself sitting in that front pew feeling the deep sadness there.  Then, I suppose because I did it for my Mother-in-Law and my Mom, I pictured myself doing a Memorial Service in Northern Illinois where we grew up.  Many in the family there would not be able to travel to Kansas.  Mary Ann’s very best friends of more than fifty-five years are there, her Sisters-in-law, nephews and nieces who love her very much, my brothers and sisters and their families, are all there or close enough to get there.  I wondered if I could do the service in a way that would center on Mary Ann’s life and not my grief.  Who else would or could do it?  We have been gone from there for almost fifty years.

For those of you who know me personally, please do not be concerned that I am in some sort of deep emotional struggle.  It was simply a time of encountering a potential future reality.  It is a good thing to be able to go there, grieve, and come back from there.  What I encountered there was painful beyond description.  Yes, I have whined about the struggles of taking care of Mary Ann, the frustrations.  I have shared that I get irritated at her and get grumpy sometimes.  I would not give up a moment of it.  I want it to go on for years to come.  We have been married forty-three and a half years.  I plan on at least celebrating fifty years of marriage with her.

Those of us who are caring full time for a spouse with a chronic disease, to be able to function effectively day after day, have to distance ourselves from some of the harsh realities.  On occasion we also need to catch a glimpse of those realities, so that we can gain perspective on the value of the time we have with the one we love. Tonight I caught that glimpse.  I am celebrating the time we have together.

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.

I have been writing these posts with a certain bravado about our meeting the challenges and choosing to live with meaning, refusing to let the Parkinson’s rule.  As is often the case, saying it is far easier than doing it.

Every two or three months, I take up the shower mesh from the bathroom floor to scrub it with Lysol Cleaner.  We put the interlocking mesh squares on the bathroom floor to protect Mary Ann from experiencing serious damage from the ceramic tile floor if she falls.  An earlier post includes the gory details of the time she fell on that unprotected floor and ended up in the Emergency Room.

The mesh lets the water through so that what doesn’t run down to the drain dries fairly quickly.  The mesh is made of a pliable plastic material that is impregnated with some sort of mold resistance material.  It remains clean other than in some places having a thin layer of residual soap from multiple showers.  The scrubbing I do just makes me feel better about the cleanliness of that floor.

I was outside for a few minutes checking on the tiles drying in the sun on the driveway, talking with a neighbor.  When I went inside, Mary Ann was on the floor in the dining room. She was not hurt at all.  She could have been hurt, but was not.  In the process she had knocked over some coffee demanding some spot cleaning on the carpet.

With the addition of the video monitor, we have reduced the number of falls dramatically.  This relatively minor matter, the fall, reinforced that being out of sight of Mary Ann either by not being in the room with her or not having the monitor in sight is risky.

I struggle to write about being trapped by the Parkinson’s as a Caregiver when Mary Ann is trapped in her own body.  I have no right to feel sorry for myself when she has fought with her own body for over twenty-two years.  A number of years ago, I remember her saying through tears (she seldom cries) that she wished she could get a new body.

She is trapped in a more comprehensive way than I am.  She cannot get a Volunteer to come and give her a break from her own body.  She is trapped, and to a lesser extent, so am I.  The Parkinson’s has come to live with both of us and has become a constant presence in the lives of our Children and Grandchildren as well.

Speaking only from the vantage point of the Caregiver, at times I find it very frustrating that I cannot simply immerse myself in something that takes me out of visual contact with Mary Ann.

A few days ago, I needed to have a Volunteer with Mary Ann so that I could go out and clean the gutters.  The Volunteer had to leave before I finished.  There was at least one fall while I tried to complete the task.

The solution of having Mary Ann outside with me for anything I need to do is not as workable as it may sound.  Due to the Parkinson’s and medications, she does not handle heat well.  She does not enjoy just sitting outside.

Going outside to feed the birds has to be planned for when she is either early in a nap, when it is less likely she will need to get up, or in the first hour or so when she goes to bed.  After an hour or so there is more vulnerability to her needing to use the commode.  Watering the flowers is equally challenging.

Sometimes I just head out the door and walk up to the corner three houses away and look at the sky for a moment, check for nighthawks if it is dusk, or just enjoy the sunset for a few minutes.  There is sometimes a feeling of being tethered to Mary Ann and her needs.  On occasion as a full time Caregiver to someone who needs help to do most of the things she does, my movements are governed by her needs, almost like a marionette’s movements are controlled by the puppeteer.  She doesn’t want it any more than I do, but nonetheless, that is how it sometimes feels.

Gratefully, there are also lots of times when I feel good about being with Mary Ann, able to be close to her so much of the time after years of being away at work sixty to seventy hours a week.  I hope that Mary Ann feels good about my being here some of the time also.  She is not able to express such feelings, but hopefully, they are there.

With all of that said, Mary Ann and I are living lives of value and meaning with joyful times as well as frustrating times.  We are free to do what we are able to do when we are able to do it..  We are experiencing life fully, taking each day as it comes with the bad and the good — pretty much the same way any of us lives, no matter what our circumstances.

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When Mary Ann was diagnosed with Parkinson’s twenty-two years ago, our Daughter Lisa was a Senior in high school and our Son Micah was in the Eighth Grade.  They were, of course, both living at home.  I had gone ahead to a new job in Oklahoma City, many hours away.  The family joined me there at the end of the school year.

Since the kids were at home, they knew pretty much from the beginning the name of the Disease with which their Mom had been diagnosed.  For those who are diagnosed after the children are out of the house and living elsewhere, the question is, when should they be told.

I am convinced that more information is better than less information.  Hiding the truth is unsettling to the children and unfair to them.  They are a part of the family.  They need to hear from Mom or Dad, whomever has the disease, what it is and what it means.  Adult children, even young adult children could easily feel betrayed if they found out from someone else through a slip of the tongue what they should have heard from their parents.

Mary Ann chose not to tell family and friends for the first five years after diagnosis.  She did not want to be treated differently on account of the Parkinson’s.  I would have preferred telling family and friends much sooner, but it was her call.  She had the right to decide who should know what about her diagnosis, and when they should know it.

My bias is toward laying out the basic information so that there is no guessing or wondering.  The disease seems to have more power when it is secret than it does when it is out in the open.  For people who care about you to move through the process of coming to accept it, they need to know about it.

When finally the news was out, we could begin to deal openly with the various challenges that came with it.   People were anxious to help to whatever degree they could. The Parkinson’s just became a part of the landscape of our lives.

Caregivers and spouses need to decide as each new dip in the roller coaster comes, how much to tell whom and when to tell them.  I have heard many say, “I didn’t want to worry the kids, so I didn’t tell them what was going on.”  The result of that approach is to increase the concern of the kids since they can’t count on hearing the truth about what is going on.  They wonder what they are not being told.  They worry about how things are really going.

It is not, of course, as easy as deciding to tell them everything all the time.  Since adult children have full lives with worries of their own, they can be overloaded with too much information, drawing them into every bump in the road in their parents’ struggle.

I guess the goal is to find the Golden Mean, the balance that allows them to be confident that they will hear when there is a significant change, but not be drawn into the day to day ups and downs.

The same is so with friends and family.  They are interested in how things are going, but they do not need to be invited to join you on your roller coaster ride.  They have one of their own.

One mistake I have made in the past as I have communicated changes in our situation, is to share a noticeable dip in the roller coaster we are on, but neglect to give a quick follow-up when things are going better.  Especially those with whom we share only occasionally and then only when there is a dramatic change can be left thinking we are at a low point in our struggle when in fact we have come out of it to a much better place.

Gratefully, at least for computer users, there are free websites that can be used to post updates.  That way people who are interested in finding out what is going on can check the site to see how things are going.  Those sites can be used to make sure that people have accurate information on your situation, rather than resorting to the “I heard that…” word of mouth that may confuse the facts.  A couple of sites that come to mind are http://www.caringbridge.org and http://www.carepages.com.

As for the kids, they need to be confident that they will hear about any major changes without being drawn into the day to day ups and downs.  That provides them with a sense of security that allows them to concentrate on their own lives.  We raised them to go out on their own and make lives for themselves.

Friends and family will vary in how much they want to know, but they cannot be a support when troubled times come if they don’t know about the trouble.  Let them know when the troubled times have relented so that they can celebrate with you.

The people in your life care how things are going.  They want to know, just remember that they have lives of their own.

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I have come to think that for all of us, but especially those with chronic, degenerative, life-threatening diseases, very many of our choices, big ones and little ones, can be framed as choices either to live or just fill time until we die.

At the Parkinson’s Support Group meeting while back, there were a number of people present who have had Deep Brain Stimulation surgery (see the June 4th post on this blog for a description of the procedure) to lessen the symptoms of their Parkinson’s.  When I thought about it after the meeting I concluded that those who chose the surgery were choosing life.  They were choosing not to simply bide their time as the disease progressed.  While people don’t die of Parkinson’s, the Disease often in some way plays a significant part in their death.

Of course not every decision we make is on the scale of whether or not to have DBS surgery.  With that said, I have begun to think that we can ask of very many of the decisions we make, are we choosing life, or simply filling time until we die.

I have been wondering lately if in our care giving and receiving mode, we are settling into a routine that is more about waiting and filling empty spaces of time than it is about living meaningfully. Every time we set foot out of the house to eat or shop or go to a public place, a meeting, worship service, to see our kids, to go for a ride, it is a major hassle.  We are always at risk for Mary Ann having some sort of problem that is much more difficult to handle away than at home.

When we eat out, it is often pretty hard to get food from the plate to its intended destination without some of the food taking a side trip to shirt or lap or chair or floor.  Just the logistics of getting to the table to eat in the first place is not always very easy.  When we attended that Parkinson’s meeting, there was unexpected intestinal activity that was pretty tough to deal with in a very inaccessible bathroom while a couple of folks we had enlisted to watch the door waited for what must have seemed like an eternity. Heading out for a drive of any distance can present the same sorts of problems.

It is so much easier to stay home and expand little tasks to fill more time than needed, to expand their importance and create the illusion that they are more satisfying and meaningful than they really are.

It is surprising how hard it can be when making a choice to determine which option is choosing life and which is just filling time.  For Mary Ann, watching television fills a void created by losing the ability to do most of the things she used to do for pleasure. However, watching television is also a very addictive life waster — something just to make the time go by more quickly.

There are times when watching a television program or DVD can be informative, mentally stimulating, very entertaining, refreshing and renewing.  There are also times when the television brings nothing to us, but rather consumes our lives, providing no real nourishment, just empty calories.

After procrastinating for a number of days, when finally we actually did do some flower planting outside, it seemed to be time we were living, not just waiting.  When we push ourselves to commit to something, a trip out, a visit, attending an activity, it is often life-affirming.  The temptation is to find some reason just to stay home, to do something familiar, something that in no way stretches us and stimulates us to live life to the fullest.

It is not as simple as concluding that staying busy is the way to fill our lives with meaning.  Busyness can be as life draining as watching reruns just to make the time go by.  For me, sitting alone, listening to a CD of an interesting piece of music, thinking and processing things mentally, calming my spirit, I find to be life-affirming.  Sitting on the deck, watching clouds and listening to birds is meaningful and productive time.  Quietly reading something that is engaging and mentally stimulating or spiritually nourishing is life-affirming for me.

Choosing to spend time with others is choosing life.  After a few days of talking about doing so, last week we called a couple of friends who, gratefully, were able and willing to say yes to a spontaneous invitation to go for a drive in the country.  The day was beautiful, the scenery was stunning.  We stopped at our favorite potter’s studio.  We stopped for ice cream in a picturesque small town in the area.  We tasted wine at a winery outlet, very tasty wine. (I know, ice cream and wine??)

Mary Ann chose to attend a salad luncheon with friends at church last Wednesday. While it was not expected of her, she insisted that we bring a salad – another foray into the kitchen.  Friends invited us to come down the block one evening for cookies and conversation.  The time together was not only entertaining but nourishing to some meaningful relationships.

It is very tempting to avoid the hassles and just stay home.  What was the catch phrase in those old Nike commercials: Just do it!  We have committed to a ten hour trip to Northern Illinois for a family celebration at the end of July.  From there we bring our oldest Granddaughter with us to Kentucky to spend time with our Daughter and her family.  We just received another wonderful thank you gift from the congregation I served. We provided a free place for the new Pastor to stay for a few months, waiting for his family to be able to move here.  The gift is a trip to our very favorite Bed and Breakfast in Arkansas — another long trip, but exceptionally life-affirming.

Choosing life is not always done in huge life-changing deciaions. Choosing life is often done one tiny decision at a time.  The cumulative effect of those little decisions determines whether we are living or just waiting until life is over.

Whether the choice is to undergo major surgery to provide hope of an improved quality of life, or to get out of the house and head down the block for cookies and conversation with friends, the choice is ours to make.  Either we choose life or just wait until it is over.

When given a choice, my hope is to have the courage to choose the option that is life-affirming rather than life-wasting, and, as the Serenity Prayer says, to have the wisdom to know the difference.

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.