August 2009


It seems so unfair to complain about frustrations with someone who is suffering from such a terrible cluster of diseases, Parkinson’s Disease, Parkinson’s Disease Dementia, and heart disease on top of all that.  My aches and pains and various annoyances are tiny by comparison to Mary Ann’s challenges.

Someone in the Lewy Body Dementia Spouses online group replied to me this way [I am paraphrasing]:  You may not have the disease, but, as the primary Caregiver, you suffer from it too.

Those of you who know Mary Ann love her and respect her very much.  Those who know her best know that she has a chip on her shoulder that refuses to allow her to let anyone push her around.  It is one of the things that drew me to her and one of the things that drives me crazy!

With this complex and maddening combination of symptoms that come and go and come again, sometimes in minutes, dealing with the ordinary daily activities can be utterly frustrating.

Mary Ann can move from concluding something completely untrue and impossible in her less lucid moments, seeing things that simply are not there, to being completely clear in her thinking, remembering events more accurately than can I. One result of the times of dementia and lucidity being interwoven together, is that I am not sure whether to take seriously what she is saying or not.  I am not sure if she is confused about something, unaware of what she is really saying or doing, or she is willfully exercising pushback, proving again that she can do what she chooses no matter what effect it has on me.

Last night was a restless night.  No amount of begging her to stay settled in bed could keep her from getting up.  Again, there were multiple trips to the commode, even when there appeared to be little or no actual need to use it.  There were changes in the covers, shifts from facing one direction to facing another, need for a snack.  Then this morning she decided to get up at 6:45am to eat and take pills.  Normally, she sleeps until 8:30am or 9:30am.  I was up with her most of the first half of the night.  There is no point in my trying to get to bed and to sleep during her restless times.

After pills and breakfast she wanted to watch television.  Once she is up, I have to be there with her, awake and accessible to her since she gets up and walks, subjecting herself to the likelihood of a fall.  Her schedule determines mine.  She reluctantly agreed to lie back down in bed.  Gratefully, she slept for almost three hours, allowing me to do the same to try to make up for a very sleepless night.

The frustrations continued with our at least daily battle over what to eat.  There were available to her, chicken salad that I had made, fresh sliced smoked turkey and provolone cheese, some lasagna from the freezer, some roast beef and vegetables from the freezer, eggs, bacon, fresh strawberries, blueberries, cantaloupe. seedless white grapes.  I spent at least forty-five minutes trying to get a response on what she would eat.  She came out to the kitchen in her search for something else different from what I had offered.  I asked about the lasagna, which she had liked very much.  She said it wasn’t as good the second time.  That one pushed me to the edge.  I asked again about the smoked turkey.  She said no.  Then, after almost an hour of this, she mentioned salami.  We had gotten that when we got the turkey at the store. It was hard for me to accept that it took that long to find our way to something she was willing to eat.

My assessment of her goal was that we go out to eat.  Since we can’t afford to eat out every day, that goal is frustrating to me.  We had gone out the last three days.  To waste all that food in the refrigerator because it just didn’t measure up to the wants of the moment is an intolerable thought to me.

The rest of the day was spent watching reruns of the most depressing and demoralizing accounts of the criminal behavior presented in vivid detail in a marathon of one of the incarnations of the Law and Order Series.  Since the house is small and I need to be very accessible to Mary Ann, it was hard to avoid at least seeing portions of some of them.

We did manage to get out for a while (a very hot day) to get some ice cream.  Then there was church tonight.  We had some freshly made food brought over to the house by a parishioner and friend later in the afternoon.

In writing this post, I have risked diminishing Mary Ann by speaking so candidly about my frustrations.  She has reason enough to be frustrated with me at least as much as I am with her at times.  She does not have the luxury of writing out those frustrations for others to read.

As unfair as it is, this is one of the ways I process my frustrations so that I can maintain my equilibrium as I serve her needs all day every day — and night.  My hope is that by putting my frustrations into words here, I can be a better husband and Caregiver to her for as many years as we have left 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.

He was just a teenager having fun.  He just didn’t know how shallow it was.  He did exactly the wrong thing, tucked his chin down and dove in.  That was twenty-five years ago.  He was eighteen years old when it happened.

By now he doesn’t really consider the life he might have had, who he might have been had that day so long ago gone differently.  He is who he is, and he doesn’t dwell on what might have been.

We attended our local Parkinson’s Disease Support Group meeting last evening.  Rod Kelley was the speaker.  He was in a manual wheelchair, with very limited use of his hands.  He drove to the meeting and spoke with honesty and confidence.  While his was the result of a diving injury (shattered C6), his journey contained elements that resonated with those gathered there.

Rod spoke of the wonderful cocoon of support that surrounded him after the accident and his return after many weeks of rehabilitation.  He was accepted back into his circle of friends.  If anything it was expanded as people came out to join in the project of helping him.

As time went by and others moved on with their lives, the reality of what was lost sunk in as he attempted to make a new life for himself, forced to take a different path from the one he was on before the accident.  At that point a bout of depression set in.  It was some straight truth from his Mother that broke through to the heart of his will to live life to the fullest refusing to be defeated by his uncooperative limbs.

What struck me as I listened to him was that the key to his choosing life was a simple acceptance of himself just as he was.  That acceptance freed him to grow and challenge the limitations.

He shared that often his speaking engagements are with Children and Youth.  Having worked with Youth for almost half of my ministry, I remember just how those I served struggled to find self-acceptance.  Many were terrified of not being accepted by others to whom they gave the power to determine their value.  Most sought to discover exactly what to say and do, what to wear, how to wear their hair, with whom to be seen, so that they would not become the object of derision, or worse yet, simply a cipher.

Rod’s message of finding self-acceptance in the body of a Quadriplegic seems to me to have potential for freeing those who see themselves as unacceptable for any reason.

Mary Ann has had to find a way to accept her value having lost many of the abilities that had provided a sense of worth.  In her case, the Parkinson’s provided the challenge to her self-acceptance.  She seems to have done remarkably well at moving through her days with a certain confidence about who she is.

When I retired, I began a journey toward a new understanding of myself that did not revolve around my profession.  The journey toward self-acceptance is not over.

Each of us as we move from one time to another in our lives, leave behind certain abilities, relationships, untraveled paths.  We all need to find the way to some level of self-acceptance to be free to live.

The courage of a Quadriplegic informs all of us as uncooperative limbs cease to define his worth and value.  He is what he is.  Knowing that, he has become more than he could have imagined.

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.

There is no clear and consistent reason that is obvious to either of us that explains the restless nights that come at random — and far too often.  Sometimes there have been a couple of long naps during the day that might explain it.  Not this time.  Sometimes there is caffeine later in the day; there was a little in the mid-afternoon.  Sometimes there has not been enough in her stomach, occasionally due to poor timing of an ice cream treat, stealing her appetite for supper.  Sometimes there is an activity the next day that has caught her attention and refuses to allow her to relax.

Sometimes it is the hallucinations.  That was the presenting reason two nights ago.  When I was using the monitor to watch, her head would lift up quickly and the she would look intently at something.  Her head moved in that way every minute or so, often less than a minute.  Often she would be up on her elbow, many times up and sitting on the side of the bed.  It lasted until some time between 3:30am and 4:00am.

The hallucinations were the usual ones, animals, threads, needles, people.  While I recognize there is a disease producing the problem, nonetheless, I got more frustrated as the night wore on.  There was, of course, no reasoning away the hallucinations.

Not long after we both finally got to sleep (a couple of commode trips during the sleep time), it was time for me to get up, since Wednesday morning is the Spiritual Formation group that meets on the deck at 7:30am.  I get up at 6:30am each Wednesday and move as quickly as I can to get myself showered and dressed, the coffee made (the most important task), set up the deck, get Mary Ann’s pills and yogurt and ice water and granola bar opened.

Normally on Wednesday mornings, I set up all the above items in the bedroom on a table next to her transfer chair so that if she wakes up before the group is done, she can get her pills taken and food in her stomach on her own.  She almost always sleeps until the bath aid comes around 9am.

Not yesterday!  After being awake and active until perhaps 3:45am, she got up shortly after 7am.   As a result, I needed to stay with her rather than go out to join the group.  After about forty-five minutes, she chose to get back into bed for a while.  I was able then to go out and participate in the group for a time.

It is embarrassing to admit how selfish I am, but I was mostly concerned about the pain in my back and the fact that both the night and my morning were being stolen from me.  I should have  been  more concerned about the challenges the day would bring Mary Ann, since she would be tired and the hallucinations would be worse  than usual.

The day went surprisingly well yesterday.  I began this post last evening but was too tired to finish it.  I just shut down.  We both got a decent night’s sleep last night.  For a few hours today, we had the wonderful gift of a young lady who lifted the wheel chair in and out of the car for a grocery store trip and our Parkinson’s Support Group meeting.  Since then a challenging commode trip and return to bed has irritated my back again, but it still seems to be improving some.  She appears a little restless at the moment, but I hope for some rest tonight.  As always, we will just see what tomorrow brings.

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.

Nine and a half hours each way, took me to the family reunion in Northern Illinois and back — one day driving, one day there, one day driving back.  There have been consequences to so much time driving.  I went by myself.  As the Reunion approached, Mary Ann’s increase in frequency and intensity of fainting spells made it seem pretty foolish to try to make a trip to Northern Illinois for the Reunion, then to Kentucky to spend time with the kids there, then back home to Kansas. 

Recognizing how much I wanted to see the family, Daughter Lisa and her family offered to come here and stay with Mary Ann while I drove to the Reunion.  They had a good time.  Son Micah and family came over to join them all at our house.  They had a mini-reunion of their own.  I missed out on it, but Mary Ann was the center of attention for the weekend — a wonderful treat for her.   

Actually she did very well.  Lisa reported that the nights went well.  The night I returned did not go so well.  When I said something about her behaving better at night for Lisa than for me, she simply observed that she knew me longer than Lisa.  She hasn’t lost her dry sense of humor. 

The time in Northern Illinios was well spent.  I arrived just in time for the Friday evening dinner celebrating two siblings and spouses’ fiftieth wedding anniversaries.  We noted that at this point the five siblings have logged 246 years of marriage between them (56, 50, 50, 4 7 and 43).  Add the years our parents were married (59) and the total grows to 305 years for six couples.  As one of the Sons-in-Law noted, that is a pretty good model for those who follow. 

In an album one sibling’s Daughter put together was a picture from our parent’s fiftieth wedding anniversary many years ago.  They were married in 1926.  I remember when looking at that picture of the whole family the first time I saw it in 1976.  Even though by then I was thirty-three years old (married with two children), it was the first time I realized that I was part of an extended family.  I am the youngest sibling by almost seven years.  I felt like an only child.  When I saw that picture, my whole perspective changed.  I became part of a family. 

We enjoyed our time together exchanging the same old family stories, laughing as if it was the first time we had heard them.   Saturday included another, less formal gathering and meal.  There was lots to be discovered about nieces and nephews, great nieces and nephews, great-grand nieces and nephews. 

Saturday also included time with one of Mary Ann’s Sisters-in-Law, renewing the connection with her family.   I would assess Mary Ann to be favorite Aunt Mary in that clan.  Two of her brothers are deceased and the third is estranged.  She has always felt close to her nieces and nephews. 

Later in the day, I got to spend time with one of Mary Ann’s lifelong friends and her husband.  Mary Ann is part of a foursome who became friends around the time they were in the Fifth Grade.  They have been fast friends since.  I, too, consider them (and spouses) to be friends.  However, when the four of them get-together, I head for the hills.  They immediately become four teen-aged girls, laughing uproariously. 

Everyone missed seeing Mary Ann, and I was disappointed for Mary Ann that she didn’t get to be there.  

When I returned Sunday evening, I was very tired, but basically fine.  As the day wore on yesterday (Monday), the consequence of all that driving emerged.  Apparently, some inflammation in my back was pushed over the edge by my return to the routine of assisting Mary Ann getting up and down. 

The pain is located right at the point that seems to serve as the fulcrum for my leveraging her up and down from a sitting position.  I do that many dozens of times in a day.  The level of pain reached a seven or eight on the ten point scale usually used by those assessing pain. 

The pain is problem enough.  What is more troublesome is the prospect of its not getting better, but rather getting worse, since Mary Ann’s need for my help does not diminish as my ability to help lessens. 

At the moment we are walking the line between being able to manage here and not being able to manage here.  Yesterday afternoon, without an appointment, I finally just stopped by the Chiropractor I go to when bone and joint pains come.  I prefer manipulation that targets the pain, to medications that impact the whole body systemically.  I am not averse to pain medications.  I just recognize their limitations and their side effects. 

Ice packs, Ibuprofen, and a second trip to the Chiropractor has brought the level of the pain down from its peak yesterday and this morning.   I have moved more slowly and carefully when helping Mary Ann  up and down, asking her to do more of the work in the process.  I have toyed with the idea of trying to call the church to see if I could get an older female teen or young adult who has pretty good upper body strength to work here at the house for a few hours each of the next couple of days at maybe $10 per hour, just to do the lifting part of the Caregiving task. 

My goal is to move away from the line we are now walking.  The other side of the that line appears to be far less workable than this side of the line.  In fact, it looks pretty frightening.   At the moment, we are in a precarious position, right on the line between doable and not doable.   

My impression is that the pain is lessening and healing is on its way.  Whether that impression will become a reality remains to be seen.  As always, we take one step at a time. 

I certainly celebrate a very comforting and positive relationship with my Brothers and Sisters and their Progeny.  The relationship with Mary Ann’s Sisters-in-Law and their families is also very meaningful.  The connection with Mary Ann’s “girlfriends” is one that is filled with love and laughter.  It is hard to feel down with so many good people who care and about whom we care.

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.

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