It popped into my mind and it just seemed right.  There is some technical work to do to get it to this blog account, but the new blog name will be “thecalltolive.com.”  Do not try to click on it yet.  I realized that yesterday and today, I felt alive again.  I may not feel that way tomorrow, but it is the call to live, not yet a done deal.

Living is a choice.  I am choosing life.  I am not going to wait for it to just happen by itself.  The good news is that it has actually happened.  That was God’s choice.  My choice is to trust his choice and live it to the full.

I suspect the last two paragraphs reveal that the signs are pointing toward healing.  I am not so naive as to think that because I felt good today, tomorrow or the next day or the one after that will feel good too.  The pain of a loss like this will remain with me until the day I die and get to see her again.  It will come at unexpected times.  It will always be accessible.  My hope is that the pain will ultimately help increase the depth, the strength and the resilience of the life that lives in me. The life that lives in me is no more or less alive than the life that lives in you.  Somehow, when I say it that way, it sounds dumb, silly.  Nonetheless it is so.  Each of us is as full of life as the next.  It looks, feels, tastes, smells different, but the source and the power are the same.  What we do with it is a matter of choice.

Now, to the day.  I got up late, but managed to walk the two miles at Cedarcrest before it got unbearably hot.  That came a little later in the day.  Tomorrow will be worse (110 heat index).

After showering, changing the bed, throwing in a load of wash, I responded to phone messages, emails, and got busy on the list.  The list is insidious.  For every one thing I check off, three more mysteriously appear.  A couple of lunches and an evening activity are in the works.

I did it!  I have now paid for it, so I can’t get out of it.  The first session will measure my body fat.  Who the heck needs to measure it.  It is right out there for everyone to see!  I am now committed to eleven sessions (two per week) of exercise with a trainer.  What have I done??????  I even bought a pair of running shorts (there will be no running) for the walking and exercising.  What kind of fool am I?  (Is that a song?)

I ran into a young person I know at the coffee shop whose husband died suddenly a few years ago.  We took the time to counsel one another.  I think it was helpful for both of us.

After that the last ten days mail was delivered.  No bills!!! That was a treat.  There was a huge stack of cards from folks who have just found out about Mary Ann’s death (still hard to write — always will be, I suspect).  I continue to be overwhelmed by the number of people who care about us.  The words of comfort, the thoughts and prayers of so many have buoyed us up over the years.  Many of those responding have sent lengthy notes recalling past experiences when we were together.

It continues to be an odd sensation to be on the other side of this ministry business.  So many have had helpful bits of wisdom to share from their experience.  I am humbled by their insights — and I thought I was the one with the fitting words to say.

I am going to continue the story of Mary Ann’s and my life together.  It has been very therapeutic to move through those years we shared.  The Mary Ann I have known and loved is coming back into full view.  It helps to spend that time together again, if only in words and memories.  What I am writing is intended to focus mostly on Mary Ann and our time together.  To make sense of it I am including the Cliff Notes version of my ministry.

Ironically, the church controversy that I have been mentioning as a tease of things to come, is not over in our national church body.  Elections at the National Convention this week are stirring the pot.  That is for someone else’s blog, not mine.

As I am continuing our story in thecaregivercalling.com, as soon as it is ready, I will also write posts like tonight’s in thecalltolive.com.  Don’t click on the new one yet!

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.

This is way harder than I ever imagined it could be.  I have counseled people, comforted people, ministered to people who have been in this kind of pain.  I thought I understood, felt their pain.  I had no idea just how much it hurt.  I saw it in their eyes, felt it in their tears, heard it in their voices.  I had no idea the intensity of the pain I was seeing.

Friend John from KC called to check on me.  I told him that I was grieving appropriately, keeping my reactions in check, only having allowed one evening of tears.  Daughter Lisa called to check on me.  I was writing thank you notes at the time she called, listening to a CD of Mozart (a gift to Mary Ann from Young).  Just as Lisa phoned, the piece of music that had started playing was a vocal solo with a voice much like Kristen’s (who sang at the funeral), singing Laudate Dominum, the very piece Kristen sang.  I did not react other than in my gut, but that reaction was painful.

If I were counseling myself, I would tell me that it is way too soon to expect any diminishing of the pain.  In fact as everyone, including me has said, it gets harder after the initial flurry of activity comes to an end.  I would tell me that.  I would be right.  So, what difference does it make to tell me that.  It still hurts like hell.

I now appreciate just how courageous all those people are who have gone through this and survived to live again.  Now I understand.  I can only hope that I will find similar courage.  I am confident that I will be fine, come to life again.  I just don’t have that time in sight yet.

I am currently planning on writing two posts tonight.  This one is about my struggle.  I just could not sit down and start writing about Mary Ann’s and my history together (the second post I plan to write tonight).  I needed to release some pain in words.  I can assure you, if you have not yet tired of it, you will soon tire of me whining about how much this hurts.  Almost everyone I have counseled during times like this has commented on how hard it is to find people willing to listen after a while.  People just tire of hearing the same sad story of how much it hurts.  If they don’t actually say it (sometimes they do), they are thinking, “when is he/she going to get over this, they have been whining too long.”  The problem is, it still does hurt, long after everyone else thinks it shouldn’t any more, that he/she should be getting on with life.

The harsh reality is, no amount of talking, thinking, praying, meditating, writing, crying, walking or eating ice cream is going to take the pain away.  It will have to run its course and find a tolerable spot to live in me as life goes on.

At this point, too much quiet, alone time, as much as I have relished it in the past does not seem to be a good idea.  I suspect I am more in need of social interaction than solitude.  In social settings a holy hypocrisy takes over.  It calls me to be better than I feel, to be okay even if I am not.  I don’t feel okay, but if I wait until I feel okay to re-enter life and function normally, it will be a long time in coming.

I got up early this morning and went to Cedar Crest again to walk a couple of miles.  It was a cool morning, blue sky with whispy white clouds, some with little puffs in rows.  The birds were singing again, Meadow Larks, Robins, Blue Jays, Red Winged Blackbirds, a Great Blue Heron and more that I didn’t recognize.  What appeared to be a Green Heron flew over at one point.  They are far less  common than the others.

I did some chores, changed the linens on my bed, washed them along with the few things I had in the hamper.  I am going to have trouble getting enough for a load of wash and filling the dishwasher full enough to justify running it.  I fed watered plants and fed the birds.  The routine tasks help give me a sense of accomplishment, however insignificant tasks are.

I made a necessary trip to the grocery store.  It felt strange to be pushing only the grocery cart instead of pushing the wheel chair with one hand and pulling the cart with the other.  I bought nothing frivolous, but it came to $75.  What does one person need with $75 worth of groceries.

Even though I have only done a small percentage of the thank you notes, I am glad to have gotten started.  As I suspected, that is a therapeutic activity, if sometimes a little sad as memories are triggered.

Writing about the intensity of the pain has helped take the edge off.  Now I am ready to write some more about Mary Ann’s and my life 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 am not completely sure why.  Some things are harder to accept than others.  There is one visual cue that removes all my ability to keep things in perspective.  It takes me right up to the edge of my ability to cope, and then pushes me over.

There she was, half way across the bathroom, walking with her pants around her ankles.  I had stepped out for only moments to give her some privacy.  On the way out, I asked her to please remember to push the button when she was done and reminded her not to get up until I arrived to help her get up.  She did neither.

That visual cue seems to release my deepest fears that the next fall will be the last one.  It surfaces every feeling of frustration that comes when her choices seem to fight against the very help I am trying to provide.  That visual cue pushes me over the outer edge the confidence that I can care for her here at the house until the end.

I got her dressed, put her on the bed, and had to leave the room for five or ten minutes to gather my composure and try to regain perspective. I wonder if part of my reaction is a safety valve blowing off steam to keep the boiler from exploding.  I wonder if it isn’t a grieving process going on that I ignore until something like that visual cue shatters my illusion of control.  I wonder if part of it is my refusal to admit to myself just how hard this is.

Yesterday morning when I went outside to clear the drive and sidewalk of snow for the Volunteer, she tried to get up from her chair, fell and took with her the table in front of her, knocked the computer monitor to the floor along with a cup with some juice in it and a number of other things on the two tables around her.  She was lying in a heap among all of it. Gratefully, as always, she was not hurt at all.  I was upset that I couldn’t so much as go outside to shovel the sidewalk without her getting up, creating the vulnerability for a fall.  Then I felt responsible.  While she couldn’t remember why she got up, I had not gotten her a new box of Kleenex, I had not gotten her fresh water, I had not taken the audio receiver with me outside so that I could hear the electronic doorbell, which she would not have pushed anyway.  I realized again how hard it is to anticipate every impulse need and provide for it so that there will be no need to get up.  It is hard to anticipate and cover every impulse need of another person — one who cannot tell you those needs in words.

She has been having a difficult time keeping things clear the last couple of days.  There are flashes of lucidity, but most of the time, it the hallucinations have continued, verbal communication has been virtually gone, and there have been times of great confusion.  At supper tonight, after working on the baked potato on her plate for a long time, mostly with her fingers, I asked if she saw the meat.  She said no.  A large piece of meatloaf was there on the plate right next to the potato she had been working on. She has often been in eyes closed mode.  She will be acting in every other respect as if she is doing things normally, except that her eyes are slammed shut tightly.  Often when that happens and I ask her to open her eyes, she will answer that she can’t.  I have learned how to walk her from one place to another when her eyes won’t open.

I just came back from the bedroom.  Mary Ann had gotten up on the side of the bed.  She was trying to pick up needles that were not there.  As we were sitting there, a couple of times she told someone to stop pulling on the quilt hanging on the wall a few feet away.  She asked we how soon we would be getting out of here.  Then she asked how we were going to get all the furniture back.  I asked if she was thinking that we were in a different place from our home and that the furniture had been moved here.  She said yes. Like Capgras Syndrome, this is a Delusional misidentification syndrome.

I just went back again.  This time she asked me to take the girls out of the bedroom.  When I asked if they were our Granddaughters, she said no.

At the same time, earlier today when I mentioned the library, she suggested that we eat lunch there.  Since we couldn’t find a parking place, we at at Bobo’s Drive-in.  At the library, she managed to pick out two books from the large print section. We had sundaes at G’s after the library.  When we got home she ended up wanting a nap.  After an hour and a half, after taking medicine and using the bathroom, I took her out to watch television.  She got up and headed back to the bedroom to nap some more.I had to wake her up for supper.

Back again. She is just having a terrible time accepting that it is night and time to be in bed.  She wanted to get dressed this time.  It is about 12:15am at the moment.

I have just been with her a few more times.  The last time included a snack and a paper towel to wipe up something that was not there.  It is about 1am now.  I am wondering how much of the night will be spent with the delusions and hallucinations.  Last night we were up quite a number of times.  There has been very little sleeping in happening in the last week or so.  The interrupted sleep is not helping the coping skills, nor is it helping the delusions and hallucinations.

I am going to edit this now and get to bed in hopes that my presence will help.  There is no good reason to hope it will help, but I am too tired to stay up any longer.  I guess interrupted sleep is better than no sleep.

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.

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.