Her name was Clara.  She starred in one of the great commercials of the last century.  It was a Wendy’s commercial.  Clara was 81 at the time.  She had a strong, harsh, manly voice.  She stood at the fast food counter a few steps back from it and in as loud a voice as she could muster (which was very loud) she asked, “Where’s the Beef?”  Wendy’s was, of course, making the point that they had more beef in their burgers than those other fast food places.

Where’s the Beep?? That is my question.  I would give almost anything to hear that beep again.  In the last weeks, maybe even months, Mary Ann could no longer manage to get the button pushed.  How I wish she would beep for me to come and help again.  I would give almost anything but not having her back to endure what she endured toward the end.

Not long before she died, I complained of all the beeps in our house.  Her pill timers at one point both went off one every two hours and one every four hours.  I used to see if I could push them at the exact same moment when setting them to see if I could get them to go off at the same time when the four hour and two hour times coincided.  I could sometimes do it.  I was so proud.

Then, of course, there is the microwave that beeps when it is done; the stove timer than beeps when the food is done; the oven beeps when it has finished preheating; the washer beeps when it is done; the dryer beeps four times, then later cycles a couple of times and beeps four times again.

Then there was the button.  There were actually four buttons placed in different locations, the living room by her chair, the bedroom by her bed, each of the two bathrooms within reach of the toilet stool.  There was one receiver that made two different electronic doorbell sounds depending on which button was pushed.  She was to push the button if she needed me.  It was a way for me to be out of sight doing something else while she was doing whatever.  The buttons provided me a bit of freedom.  When I heard the doorbell sound, I could come and help her so that she wouldn’t fall.

When the kids were all here, we were doing load after load of clothes.  The washer and dryer were going constantly.  After I commented on how tired I was of all the beeping, Micah turned off the beepers on the washer and dryer.  At one point after everything was over, I said that I never wanted to hear a beeping sound again.  I have now turned the washer and dryer beepers back on, and I wish, how I wish the doorbell sound would bring me back to her side.  Today, Micah took the buttons and the doorbells, along with the lift, the commode, the transfer chair, a shower chair, the support handles that were around the toilet stools, the ramp, the hair washing basin, and the ramps so that they can end up helping others (Craig’s List, Freecycle).

Every once in a while when I looked at the end coming from a distance, I wondered if I might get over her loss too quickly.  What was I thinking????  My usual pattern has been to live in the present.  I have never wanted to go back, once I have taken a step forward.  Not now.  I can see that this seems likely to take a very long time.  I remember often hearing people say that they had trouble when they would come upon something belonging to the Spouse who had died.  I empathized with them, agreed with them than it was a hard thing, assured them that it was very normal.  While I meant what I said, I didn’t appreciate just how powerful those little reminders would be for me.  Today I was getting rid of some old T-shirts to make room for some new ones.  The first two I grabbed were ones that we had split down the back when we could no longer move her around to put a shirt on over her head.  It is painful right now just telling you about it.

There is a bit of a pattern that I have observed in how the last few days have been going.  The first third of the day is more okay than not okay.  I usually am fairly busy doing things.  The middle third of the day has okay and not okay woven together in equal parts.  The last third of the day is more not okay than okay.  The pain is there most of the time, sometimes almost overwhelming.  These are not clean segments.  Any time of the day I can be okay, then not okay, then okay, then not okay again.  Right now “not okay” holds the strongest position.  I long for the day when “okay” will assume the place of prominence.  As I said last night, at the moment that day is nowhere in sight.

This morning I got up very early and left the house by 6:30am to walk at Cedarcrest. When I got home I showered and headed off for the Farmers’ Market.  What a busy place.  It must be two or three times the size it was the last time we went a couple of years ago.  There are food vendors, craft vendors as well as the vendors selling fresh produce.  I bought beets (with the greens), a freshly baked scone, a bottle of BBQ Sauce (Uncle Sunny’s), a breakfast burrito, five pounds of local honey, and a small vase of flowers (now that the funeral flowers are gone). The bright flowers lifted my spirit a bit.

I took all those things home and then went back out to Penney’s to pick up some shorts, T-shirts and short-sleeved dress shirts.  The shorts are Lisa’s suggestion.  She made the point that it was no wonder I was hot since I always wore jeans, hiking boots, a T-shirt and a casual shirt over it.  See, I can listen.  (You should see those shorts with the hiking boots — not really, I switched to tennis shoes.)

The dress shirts seem to me to signal one of the changes in my pattern of life.  I got them so that I could dress more appropriately for morning worship services.  When I was caring for Mary Ann, I didn’t care much what I looked like.  The Evening Service is “come as you are.”   I had a single center of my activity and purpose in life – taking care of Mary Ann.  Now I am being forced to look again at who I am and what I am about.  One thing is for certain, I need to be with people.  The morning worship services allow more interaction time with people who after so many years have become like family.

I made a another trip to the grocery store for something I missed yesterday.  I noticed that I am also now needing to engage people in conversation.  I noticed an accent in the speech of one of a couple of folks I ran into three or four times in the store.  She was from Germany.  I could practice the one sentence in German that I know.  It is the one that says that my Mother was born in Germany.  When I engage people in conversation, strangers or otherwise, I feel better.  They may be annoyed, but I feel better.

I worked some more on Thank You notes, then Micah came over to pick up the items from the garage.  We talked about a variety of things, but some of our conversation was processing candidly what we are experiencing and how we are trying to deal with it.  It was very helpful to me.

This evening Don and Edie had invited me for dinner.  As always, it was a great dinner with lots of good conversation.  All the activities today helped provide some normality.  The undercurrent and plenty often bubbling to the surface of the pain remained, but it helped to be pulled away from it so much of the day.  It still hurts as much as ever.  A good day doesn’t fix what I am going through.  It is not fixable.  A good day is still better than a bad one!

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Downstairs on a quilt rack is a queen-sized Sampler Quilt. A Sampler Quilt is a quilt made with many different patterns that serve as samples of traditional quilt blocks. That quilt was stitched entirely by hand — no machine quilting. The stitches are even and very, very tiny, the way quilt stitches are supposed to be. It took Mary Ann two years to transform pieces of fabric into a completed quilt. Parkinson’s has stolen from her the ability to handle a needle at all, let alone sew a quilt.

Those who have a progressive disease with no known cure are forced to watch their abilities, abilities that that helped define them as unique individuals, diminish until each one crosses a threshold that leaves them empty of that ability. Each loss is a little death. It is grieved just as if a piece of her/hiim has died. Each loss brings with it all the same stages that have been used to describe the grieving process that is experienced after losing a loved one.

Most of the times Mary Ann and I find ourselves in conflict it is because we disagree on the degree to which one of her abilities has diminished. She is convinced she hasn’t crossed the boundary that leaves that ability on the other side, out of reach. I am often more ready to find acceptance than she is when an ability is lost to her. While the conflicts are unsettling, seeing her fighting acceptance reassures me that she is still her feisty self. When I see her accept whatever loss it is, I feel a deep sadness that a little of her is lost.

Watching someone you love lose a bit of herself grieves the Caregiver. To put it in more dramatic terms, Caregivers watch their Loved Ones die a little at a time for however long the caregiving goes on. While that is a harsh way to speak of it, calling each loss a death helps put in motion the process that ultimately can lead to acceptance.

Please understand, there is no way to make this part of the life of a Caregiver and Carereceiver pleasant and fulfilling. What can happen is by accepting the loss, full attention can be given to the task of building a new reality that has new ways of finding meaning and fulfillment. That, of course, is far easier said than done.

As a Caregiver, I am tasked with finding new ways to live meaningfully, when old ones are no longer available. I cannot stop the progression of the disease, the process of decline, but I can look for places to stop along the way, places of significance and meaning, places that could not be discovered if still trapped in the grief.

As I was thinking about this today, it dawned on me that the chronically ill and their caregivers are not alone on this journey of loss and grief and the need for acceptance. Every one of us who has seen a gray hair or felt the sharp stab of some arthritis or seen wrinkles where the skin used to be smooth and taut, every one of us who has been defeated at our favorite sport by someone younger and more agile has some grieving to do.

Since we are all mortal and confronted by our mortality at every sign of aging, we all have the challenge of identifying what we have lost and moving through the grieving process to acceptance. Otherwise we will waste the time of life we are in trying to live in a time long gone. We will miss whatever opportunities lie embedded in the present, opportunities unavailable to us until now.

For those with Parkinson’s Disease or any other seriously debilitating disease, the pace of the loss is increased, the degree intensified. There is just more grieving to do and more acceptance to seek. The abilities in those with a progressive disease may diminish to the extent that it seems virtually impossible to find anything left for them to do.

In almost forty years of pastoring, I have been invited innumerable times into peoples’ lives at the death of someone they loved.  (Sometimes it was someone I loved too.)  Sometimes the death came at the end of a long life. Sometimes there was a protracted illness. Sometimes people stood watch as their loved ones died painfully.  Sometimes the death came so suddenly as to leave them breathless, having had no time to prepare or say goodbye.  No matter how it happens, a death must be grieved. It is not a matter of one being harder or easier to deal with, each must be grieved.

For those who are Caregivers for someone with a progressive disease for which there is no known cure, the grieving is spread over all the years of Caregiving.  There are times when the pace is measured by small steps and times when there are frightening leaps toward the inevitable end of the journey.  Grieving is an important process in the journey.  It gives us a chance to express a variety of emotions, to deny for a while whatever it is that has been lost, to spew out some anger, to spend time wondering what we could do to change it, to just feel bad about it for a while and finally to recognize it for what it is, another step we have taken as we travel along with each other and the disease.

When we move through grief in a healthy way, the accepance that comes frees us to be ready to see what possibilities lie in the present.  We are able to see them and judge their value by what is so in the present, not by a past that is no longer accessible.

It must be added that those of us who deal with Parkinson’s Disease, Parkinson’s Disease Dementia, Lewy Body Dementia and a number of diseases like them have the even more frustrating challenge of grieving the loss of one level of functionality, only to see it return for a time, then disappear, return again, all without any identifible pattern.  It is sort of like the weather in Kansas and Oklahoma.  If you don’t like it, just wait a bit, and it will change. One loss may be grieved many times.  There is joy when what has been lost returns and sadness when it leaves again.  We have the challenge of grieving the loss of consistency and the ability to make and realize plans based on the abilities that exist at the moment.  We have to develop the ability to turn on a dime and change directions based on what is so in each moment as it comes.  Our need is to come to acceptance that we are not on a train moving at a measured pace in a certain direction.  Our need is to accept that we are on a roller coaster with all the twists and turns, ups and downs, with no way of knowing when or where we will be next.  We know the destination for certain.  We just have no idea when that destination come and the roller coaster will stop.

In the meantime, the journey with Parkinson’s or any debilitating disease accompanying us demands that we learn to grieve effectively.  The grieving helps us find our way to acceptance so that we can live in the present, so that we can see and take advantage of whatever opportunities lie in the present as it really is.  The ability to grieve losses effectively frees us to live with meaning and purpose the life we have each day as it comes.  The day we are in is the only one we have for sure.  Grieving well frees us to live it to the full.

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.