It was a terrible sounding crash.  I had just gone into the kitchen to take my morning vitamins.  She had had breakfast and pills, was dressed, had been to the bathroom, was watching a television program she likes.  Normally, that is a safe time to walk out of the room for a moment.

Not this time!  It sounded horrible.  I ran out to see what happened.  She was not hurt.  That is the most important thing.  The table lamp was glass, gratefully, it had not shattered when it went flying.  Everything on the end table was spread out on the floor, the phone, a thick ceramic coaster was broken in half, a few other items that had been sitting on it were here and there.  The speaker on the stand next to the table had fallen to the floor.  None of it hurt her.

The end table itself was broken into pieces.  She wasn’t hurt.  That is the important thing.  It is just an end table.  Why did it upset me so??  People are more important than things.

It is odd that some things carry more symbolic significance than the thing or the event itself.  My Dad made the end table.  He was not much of a woodworker, but for at time after he retired he made a number of things out of some beautiful Black Walnut boards. There is a history that is embedded in that table.

My Dad grew up on a farm, but worked in an office his entire career.  Throughout my childhood, we went for rides looking for the perfect piece of property in the country to buy.  When I was eleven years old, he found it, twenty-six acres of woods and creek with a few tillable acres on the other side of the creek included.

One day when Mom and Dad were out there puttering, the weather changed.  They headed into a little seven by ten foot structure made of a few boards and some screens for staying out there on occasion.  When the storm ended, there were at least twenty full sized trees that had blown down, Oak, Ash and Black Walnut.  Three of them had fallen on three sides of that seven by ten, flimsy box they were in during the storm.

Those trees were cut into three-quarter inch thick boards and then dried at a local lumber yard.  The Oak and Ash trees became board and bat siding on the house they built to move into when Dad retired.  The Black Walnut boards provided paneling for the basement and end tables and book cases and lamps and candlesticks, a coffee table, and other items that reside in the homes of their children, the five of us, no longer children since now we range in age from 66 to 80 years old.

It is just an end table.  It’s demise is a reminder that nothing in the house is safe.  The fall itself is another reminder that we are out of control here.  I reacted with loud questions, “why didn’t you push the button?”  It sits right by her hand.  I come and help when that electronic doorbell sounds. She has been fainting numerous times a day in the last couple of weeks.  I have asked again and again and again that she push the button, that she let me help her when she is walking.

Seeing Mary Ann lying on the floor, seeing the broken table, a lamp that could have broken and cut her, carried with it the painful reminder of how close we are to not being able to sustain this here at the house.  I couldn’t stop it from happening.  She wasn’t hurt, the damage was not to her, just to material things.  I won’t tie her in the chair, but short of that, there is no way to stop her from putting herself and our fragile life here at risk multiple times a day.

A Volunteer came over shortly after this happened.  She has taken the table to friend who will look at it to determine if the pieces can be put back together in some form or another.  We will see.  Then I lunched with a friend who has finally had to move his wife to a nursing home because he could no longer do the very things we are trying to do here.  The challenges of sustaining that arrangement at the nursing home are also daunting.  It is difficult to find the boundary between being able to manage at home and needing to move to residential care.  It is analogous to the plight of the frog in the water on the stove, heating up until he boils, never realizing the danger until it is too late.

While I am physically able to care for Mary Ann here, I will do so.  The one dynamic that complicates that detemination to care for her here is the ability emotionally to do it.  I released some frustration by talking loudly about my feelings when I saw what happened.  Talking with a friend with similar circumstances helped.  Sitting for an hour in my beautiful spot on the hill, watching deer(among them twin fawns), listening to music, thinking, praying, all helped.  Thinking about and now writing this post helps.

As always, the hardest part of an event like this morning’s fall is handling the fact that I am not the sweet, thoughtful Caregiver who is always nurturing, helping without a word of complaint, the Caregiver I should be.  I shouldn’t give a rip about an end table.  She didn’t want to do it.  Later in the day she said, “I am sorry I broke the end table.”  It just happened.  I can’t blame her, but, just as she can’t keep from popping up to walk when at some level she knows she can’t do so without putting our current life at risk, I can’t keep from reacting in that first moment with frustration knowing that it didn’t have to happen.  I need not to pretend that I don’t have feelings of frustration and bury them in that pretense. Trying to do that really would make me crazy.

On the positive side, once its over, we just get on with whatever needs to be done.  My loud talking provides an immediate safety valve release of frustration.  We return to a loving relationship.  The glass lamp is now at the other end of the couch in a place she very rarely goes near.  There is a floor lamp taking its original place.  For the moment in place of my Dad’s table there is an end table that I made, a simple one that should be easy to repair if broken.  I will begin a search for something to put there that has no corners into which she could fall, something with room for the phone and a few items to reside.

It is just an end table, but at the same time it is a symbol of much more in our system of survival here, physically and emotionally.  The table is broken, we are not.

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.

A comment on a post I wrote a couple of nights ago raised an issue that is significant for many Caregivers who are doing full time caregiving all day long every day.  The writer mentioned that she often uses the time after her Loved One goes to bed to try communicate with others, since the opportunity for adult conversation is limited.

For many of us conversation that was a routine part of our daily lives with our Loved One and with others has pretty much ceased.  Especially those caring for someone with a form of Dementia find it tough to converse meaningfully.  A number of recent emails from others who are caring for spouses with Dementia have included reflections on the challenge of dealing with the lack of meaningful conversation and the loneliness that sometimes settles in.

Until I retired a number of months ago, I was active in a profession that involved lots of meetings, visiting with people, counseling folks struggling with problems, speaking in front of groups, and many hours each day communicating electronically (email).  All of that came to a halt pretty much the day I retired.  Emails ceased, phone calls stopped, meetings ended, there were no more visits to be made, no more speaking in front of groups.

Now there is one person stuck with me twenty-four hours a day, seven days a week, someone who has never really been a talker and now after twenty-two years of Parkinson’s has taken its toll finds great difficulty getting thoughts into words and sustaining conversation.  She has struggled with the challenge of having me there constantly, so I can hardly complain.  She tired long ago of listening to my voice as it drones on and on.

One comment in an email I read tonight provided an image of the Caregiver in need of communication.  She mentioned that when she was at the dentist getting her teeth cleaned, every time the Hygienist took her hands out of her mouth she started talking immediately, not stopping until the instruments were back in her mouth.

I find myself starting conversations in with strangers in line at the store, or making conversation with the person at the register. Anyone who dares cross our threshold is likely to be fully engaged in conversation by the time their second foot has landed inside.

Anyone who reads this blog has certainly noticed the length of the posts.  When I write I imagine that there are people actually reading this with whom I am having conversation.

Living in a world of silence other than the sound of the television, can certainly produce a deep sense of loneliness.  I suspect there are lonely Caregivers by the tens of thousands out there.  It seems to me very likely that lots of them, probably a majority, are not computer users who have the option of going online and relating to others regularly. If the Caregivers are lonely, imagine how lonely and bored those who need the care must be.

There are no simple solutions to the loneliness and isolation, the boredom and lack of conversation that comes with the Caregiver and Carereceiver territory.  For me the battle with loneliness starts with developing a rich inner life that experiences each moment fully and fills my thoughts with wonderful images from my environment, from reading, from the lives of others I have encountered, from my own story, from a head filled with unfinished business, from intellectual and spiritual curiousity.

While I have never been a writer, the exercise of writing these posts is safisfying and fulfilling.  Reading emails and occasionally responding to those who are caring for spouses with Lewy Body Dementia is engaging.  When Volunteers come to stay with Mary Ann to give her a break from my constant presence, it takes me a long time to get out the door as I engage them in conversation.  I find myself on the phone with brothers and sisters more often than ever before in my life.  Trips to the coffee shop to get a cup of coffee take a little longer. When we attend the Parkinson’s Support Group meetings, I am not shy in speaking up.

Since I am not good at all at small talk, I know very little about sports and I am completely uninterested in debating politics, conversation just for the sake of talking is not all that satisfying.  I suppose I can talk about the weather with the best.  I do have a genuine interest in people’s stories, so given the opportunity, I will find out what you do and what you like and dislike about it, where you have lived, what challenges you have faced and how you are coping with them.  The problem when homebound by the Caregiving task, or the chronic illness, is that the opportunities for such meaningful conversations are limited.

While it helps, electronic communication is not fully satisfying to me since I thrive on the non-verbal elements of communication as well as the actual words themselves. Getting out of the house with the one for whom you are caring is worth the effort.  Go anywhere.  Do anything.  Put yourselves out there where the chance for human interaction and verbal interchange is possible.

Every job has its good points and its bad points.  The trick is to “accentuate the positive and eliminate the negative” as the lyrics to an old song say.  Celebrate what is good that the Caregiving experience brings into your life.  Refuse to give the negative more power than it is due in ruling, in defining your life. I know that is far easier said than done.

Caregiver loneliness — Are you?  What are you doing about it?  What works for you?

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.

It is about 11:40pm local time as I start this post.  It is not unusual for me to be writing until 1am or 1:30am.  Why on earth don’t I start doing this earlier?  Beyond lack of organization of time and self-discipline, there are some reasons built into the task of Caregiving.

First of all, when someone for whom you are caring cannot take care of personal needs or walk very far without falling, every waking moment is bound to the care and protection of your Carereceiver.  As a Caregiver, you are doubling the number of basic tasks associated with a human’s daily needs.  You are living two lives at the same time. 

One of the lives you are living is, of course, your own.  You know what you want and when you want it.  When living someone else’s life also, just discovering what the wants and needs are takes a great deal of attention and mental energy, especially, if that someone has difficulty vocalizing those wants and need. 

When nature calls the one for whom you are caring, he/she may not hear the call until it is too late to make it to the necessary destination.   Mary Ann can be up and off walking to one place or another in seconds.  Often I discover that she has gotten up and headed off by the sound of the thump when she lands on the floor.  It is exhausting to keep attention so tuned as not to miss those moments of need.  I have heard and believe that mental exercise is far more tiring than physical exertion.  The stamina needed to pay attention to someone else’s every move, every need, every want, uses up endless amounts of the Caretaker’s reserves.

One of the consequences of the constancy of the needs is the inability to find time to concentrate on a task that needs more than a few minutes to do.  Writing a post for this Blog cannot happen while Mary Ann is up and moving about.  My time belongs to her all the time she is awake and some of the time she is sleeping.  I suspect that the same is so for most Caregivers. 

In a sense, my day starts when Mary Ann settles in bed.  There are periodic needs during the night, but the general pattern is that the time I can call my own comes between about 9pm and 1am. Now that I am retired, I am able to sleep longer in the morning, assuming Mary Ann is willing and able to sleep later also. 

Before I retired, the pattern was about the same, except that sleeping later in the morning was not as often an option.  Those of you who are working full time and caregiving full time are likely to be exhausted most of the time, especially if you also claim that late night time as your own.  Here is the logic of staying up.  The moment the Caregiver gets up in the morning, assuming the Carereceiver gets up then also, it all starts over again.  Waking up in the morning is waking to intense demands.   To go to bed at the same time the one for whom you are caring does leaves no time just for yourself — just to be one person only.  

Of course this is an unhealthy pattern.  Sleep deprivation has very destructive consequences.  It affects negatively our ability to perform daily tasks effectively and efficiently.  We are hardly at our best.  Coping with little stresses becomes more difficult.  Mole hills actually do become mountans in our mind.  We can become forgetful, irritable, our thought processes can slow.  I need no scientific studies to demonstrate the truth of those conclusions about the impact of too little rest. 

Now comes the time to share wonderful solutions to the problem of Caregiver exhaustion.  If I had this one solved, I would not be writing this post at what now is about 12:20am.  I will offer some of the feeble attempts I have made over the years of dealing with this particular dimension of the Caregiver’s challenge.  For one thing, I structured the week so that I had some long days and some days to sleep in.  It seemed to work better for me to work many hours in one day than normal hours two days.  By the way, I realize that doing so breaks the rules for sleeping well, the ones that say, get up at the same time every day, go to bed at the same time.    Another rule I regularly break is the one that says, no caffeine later in the day.  Caffeine is my drug of choice.  Evening meetings, if I hoped to actually be awake during them, demanded a heavy dose of caffeine through my chosen delivery system, PT’s Coffee (by the way, the best in the nation as far as I am concerned — sorry, Starbuck’s fans). 

On occasion (too rarely), a Volunteer or my daughter would come over and sleep upstairs to care for Mary Ann during the night, while I got a full night’s sleep in the downstairs.  Especially when I was working, those occasional two night retreats would include nights in which I slept ten or twelve hours. 

Had I continued to work much longer, circumstances would have demanded using the local resources I mentioned in last night’s post to provide paid time covered by others so that I could get rest on occasion.  

Since it is now heading for 12:40am, it is apparent that I need counsel from any who happen to read this post and have ideas for how to minimize Caregiver exhaustion.  One possible solution would be to simply stop trying to write posts for this blog any longer.   Two reasons speak against that solution.  One is that I would be likely to just sit in front of the tube flipping between inanities there.  The second is that I find doing this writing very satisfying and energizing.  Anticipating writing adds interest to my days and makes be a better (and more sane) Caregiver.  The processing I do here has had a very positive effect on my ability to reframe sometimes frustrating tasks in ways that allow me to discover meaning in those tasks, at the same time giving my life meaning.  Why so tired?  It is heading for 1:00am now.  All in all, I am willing to endure being tired if it allows me to live meaningfully. 

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.

Whether the reason is lurking somewhere in my DNA, those double helixes containing the code that tells the cells in my body where to go and what to do when they get there, or in subtle messages from Dad (he didn’t talk much) as he showed me what to do with my feelings (don’t show them), I did not end up able to cry very much.  Mind you, I can tear up at a sappy movie.  My lip will quiver when I am overcome with emotion, but really crying, sobbing, is a very rare experience for me.   There was the time my Dad died, the day our daughter left for college (our Son contends this is just more evidence that we liked her more than him — gratefully, she is convinced we liked him more than her — we must have done something right).  There was the time after six sleepless nights in Mary Ann’s hospital room that I broke down, sobbing, in my Son’s arms.  I cried when we buried good friend Al.  I can count on one hand the times I have really cried. 

I am a member of an online group for those caring for spouses who have Lewy Body Dementia (check www.lbda.org for information on joining).   Parkinson’s Disease Dementia is a Lewy Body Dementia.  There is an understanding of confidentiality in the group.  I suspect no one will mind my sharing one of today’s topics.  Someone asked for suggestions for “music to cry by….”  Please understand that very many of these brave folks have given themselves completely to the care of Loved Ones who need them constantly.  Lewy Body Dementia (LBD) is a particularly insidious form of Dementia.  Symptoms can come and go from one minute to the next with no way to predict when they will do so.   I can only hope I will muster their courage when our journey takes us where so many of them are or have been. 

The songs suggested had names like, The Days of Wine and Roses, Because of You, The Way We Were, If Tomorrow Never Comes, Blue Eyes Cryin’ in the Rain, Through the Years, You Were Always on my Mind, I Still Miss You, After the Lovin’, And I Love You So, and dozens more.  I was struck by how many could respond immediately to the question, “What is music to cry by….”  The posts just kept coming. 

Then came a few who asked (I paraphrase), who needs music, I can cry any time, just stopping to think brings tears.  It would break your heart to hear the litany of impossible challenges these people endure, some for decades.  Yes, there is a time to weep.  We are made of water, mostly.  Sometimes we need to just spill some of it before we explode.  I suppose that is what tear ducts are for.  No, it doesn’t change our circumstances when we cry.  It changes us, our chemistry.  Strangely, it seems to take us close to the place from which laughter comes.  When spending time with grieving families, listening to stories about the one who died, the laughter and the tears seemed to live right next door to one another.  Both seemed to have healing power.

But what of those of us who don’t do well at crying?  We need to find our way to a mechanism for releasing whatever it is, whatever healing it is that tears and laughter can provide.   My insides can be stirred by a Bach Passion, or Russian liturgical music, or Ralph Vaughn Williams, or Poulenc, or Widor, or Telemann, sometimes Enya or the Celtic Women or Hammer Dulcimer music.  For me, these past few days have confirmed that my release is to be found in thoughts put into words.  My life’s work has revolved around talking.  Now that we are mostly at home, today was a day of sleep for Mary Ann (one of the transitory symptoms of LBD), there is no one to listen.  So, here I am, making words, my version of crying and laughing and healing.  And you who dare to enter this Internet domain are my therapists.  (Please do not bill me!)