The Caregiver Calling

I’ll bet you wish you had seen hundreds of Wilson’s Phalaropes swimming in little circles at a dizzying rate of speed, a White-faced Ibis, lots of Black-necked Stilts, a bunch of cute little Semipalmated (not fully, but only semi-palmated) Plovers, very many American Avocets and Hudsonian Godwits, not to mention the White-rumped Sandpipers and the Scissortail Flycatcher — all this along with forty-eight more varieties of birds.

I got a day off yesterday, and so did Mary Ann!  We both had a great time.  I spent the day birding with an experienced birder, a new friend that I now call Bob, and Mary Ann spent most of the day with our Son, Micah.

Arranging a day off is no small task for a full time Caregiver.  Those routines that provide the structure to the day and provide assurance that everything that needs to be done gets done, are not easily explained to someone who does not do them on a daily basis.  To write down instructions for all the routines and appropriate responses to the variety of situations that might arise would be almost impossible.  It would read like the instruction manual for a computer program.

To have a day off, I needed to have enough confidence in Mary Ann’s safety and security that I could let go of any concern, relax and enjoy the day’s activities.  There are pills to be taken, a medicine patch to be replaced, a wound to be dressed, bathroom needs to be dealt with, food to be provided, a commode to be cleaned out, maybe a shower and/or hair washed.  There are endless possibilities for problems to arise, from falls to heart pain to fainting spells.

I was able to relax completely.  Here is why:  For the last years of my ministry, we had an agency provide a paid person to do Companion Care with Mary Ann for three hours from 6:45am to 9:45am on Sunday mornings.  That was a time that it was not appropriate to ask a Volunteer to serve.  We have used two agencies mainly.  One is called Comfort Keepers and the other Home Instead.  Both are very good.  The one we have used most recently is Home Instead.  For the last couple of years of ministry, Debbie came each Sunday morning.  She became very familiar with the morning routine, including shower and hair washing, dressing, taking meds, providing breakfast, cleaning the commode and dealing with the fainting spells should they happen.  Debbie was available yesterday for the early morning shift. The cost is about $16 per hour.  It is worth the sixty dollars that it will cost to have her there, to have a day off for both of us. (Home Instead: http://www.homeinstead.com/; Comfort Keepers: http://www.comfortkeepes.com/)

For the evening three hours, Margaret was willing to come.  She is a very good friend to Mary Ann, as well as the Parish Nurse for our Congregation.  She has all the skill and experience anyone could ask for.  She has taught nursing for decades and, while retired, still keeps active, serving on call as a home health nurse for a local hospital along with serving full time as Parish Nurse — volunteering her time in that role.

During part of the afternoon, until a virus laid her low, Edie was going to spend a few hours.  She is also a good friend to Mary Ann and has dealt with everything right up to calling the ambulance to take her to the hospital when it was needed.

The best part of all was that our Son, Micah, was able to come from 9:30am to 6:30pm to be with his Mom.  Our Daughter-in-Law, Becky, and Granddaughter, Chloe, were on a Girl Scout campout this weekend.  That freed the time for Micah to come.  For a Mom to have her adult Son to herself for a full day is a treat beyond description.  Micah always brings out the best in Mary Ann.  She was alert and able to communicate.  They talked on the phone with our Daughter, Lisa.  They played some Scrabble.  Needless to say, the game only went a two or three rounds, but Mary Ann managed to come up with some of the words on her own.  She used to be merciless in playing Scrabble with the Volunteers.  They knew they were in the presence of greatness.  Micah took her outside for a trek to the nearby park, looking at flowers and enjoying the weather as he wheeled her along.  They ate some leftovers and then later headed out to get a milkshake from Sonic.  Micah and ice cream too!  Can’t beat it!

One of the special benefits of the day were the bits and pieces of conversation that Micah had with his Mom.  He got to have her at her best some of the time.  He experienced some of her hallucinations.  There were some times when she was not tracking, but much of the time she was.  While their conversations were between the two of them, one interaction that Micah shared was very revealing.  She wondered if it was not so that once a person needed to be fed, they would have to go to a nursing home.  He assured her that as long as there was someone at home willing to help, that was not so.  She has in recent days begin allowing me to help her with food, even in public.  That need must have been a great concern to her, carrying with it in her mind powerful implications.

As I processed the day, one thing popped into my mind when thinking about how good the day was for the two of them.  Mary Ann and I have enjoyed hopelessly spoiling our Granddaughter Chloe when she is with us before returning her to Micah and Becky to deal with the aftermath.  Turnabout is fair play, as they say.  After a day of Micah’s full attention, entertaining her and enjoying her every minute of the time he was there, I have to deal with the aftermath!

If there will be a Caregiver’s day off (as well as a CareReceiver’s day off), there are all sorts of things that need to be done over a period of time to allow it to happen.

For one thing, we had developed a relationship with an agency, using it on a regular basis, if only for a short time each week.  That way the option was available and familiar.  We  had already developed the booklet with all the pertinent information if any problem should arise.  (See this blog’s March 29th, 2009, post titled “Caregivers’, Carereceivers’, Volunteers’ Safety Issues” for more information on the booklet.)

We had allowed some good people to spend time with Mary Ann over the past eight or nine years, providing a cadre of people to call on, people comfortable with her, experienced in dealing with a variety of contingencies.

We planned the day far enough in advance to allow for the scheduling needed so that it could actually happen.

It was helpful to make a commitment to the day and to make the commitment to another person so that the motivation to follow through would be there.  It surprised me that I was ambivalent about going as the day approached.  I realized that as I have settled into the role of full time Caregiver, the role has come to provide a certain comfort and security.  I was apprehensive about being away for the day.  I have come to find meaning in what I do here to the extent, that it was a little uncomfortable to think of being away from that fulfilling task.

The day off was good for both Mary Ann and me.  We had a chance to be ourselves, each separate from the other.  It was reassuring that we both had a very good day. That the day went well encourages us to do it again some time in the future.  It took lots of planning, but it was worth the effort.

Caregivers, take a day off! It will do both of you a world of good.

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.

Maria’s George died this evening.  Others are not far behind.  It is such a privilege to read the posts of those in the last days and hours of life with their Loved Ones.  The Lewy Body Dementia Spouses’ group is candid about what they are going through whatever it may be at any given time.  It is a help to the rest of us to hear straight talk with all the details from others at different places in the journey with Lewy Body Dementia.

Each death that is recounted brings lots of responses from others.  There are many celebrations that the battle is over and the Loved One is finally at peace. There is relief that the Caregiver Spouse is also free from the clutches of the Dementia.  There are from the same people words revealing a deep sadness that the time of Caregiving is over.  One spouse giving care during those last days and hours wished she could just keep ministering to her husband without ever having to give him up.

As that fond wish to continue to care resonated in my thinking, I realized just how true some words were that were spoken by a friend when I retired.  He has retired and cares for his wife who has had ALS for many years.  He observed what an honor it is to be able to become a full time Caregiver.

As so many in the online group have died in the past months with more moving into their end times, I recognize just what a privilege and honor it is to have time with Mary Ann.

We spent a good portion of the day driving in the car.  We headed out to pick up a friend and then drove to the studio of our favorite potter.  The studio is in a tiny Kansas town about an hour away.  We picked up a couple of pieces while we were there.  One was a chili bowl with a handle and high sides.  Our hope is that the high sides will keep the cheerios from sliding out of the bowl as Mary Ann chases them with the thick-handled spoon.  We left with his artisans a plastic plate we had purchased to make it easier for Mary Ann to push food on the fork or spoon without the food slipping off the edge of the plate.  Our request is that he make a ceramic plate shaped like the plastic sample painted with glazes matching a couple of other pieces he has done.  There is no reason that we need to leave aesthetic considerations behind when we get adaptive devices to make Mary Ann’s life a little easier.

It is her birthday tomorrow.  The bowl will be her birthday gift — surprise, surprise! We have come to the age at which birthdays diminish dramatically in interest.  At least that is how I rationalize my lack of creativity in celebrating them.

We drove through an area of the Flint Hills.  The green of the spring grass, recently watered by rain showers, glistening in the sun was breathtaking.  Birds were flying, cattle grazing, van passengers soaking it all in.

As I think about those who have lost the ones for whom they have been caring, i realize more vividly than ever just how great it is to have this time.  When I am mid-task, doing something I don’t particularly enjoy, irritated at Mary Ann because she seems to be fighting against the very thing I am doing to help, it is easy to weary of it all and wish it was over.  I am grateful that it is not over.  I am grateful that we can sit at Panera’s and have a Bear Claw and a cup of coffee.

We have had a couple of tough nights in the last week or so.  Those are the nights when she is restless, needing some sort of assistance two or three times during every hour of the night.  It is not so much the tiring night that is the problem but the two days of increased hallucinations and confusion and long daytime naps that inevitably follow.  Tonight again, there was concern about the comings and goings of the Thursday people. We went through the skin Cancer removal, subsequent fall and repair of the wound, all in the last ten days or so.  Mary Ann has struggled more with spatial issues and dexterity resulting in her need for more help in getting food of the plate and into her mouth.

In this same last week we have had some very good days, eating out with some new friends, running errands, spending time at the library, having ice cream treats, going to see the Star Trek movie, enjoying a helpful Parkinson’s Support Group meeting, experiencing our own little meals on wheels program as  couple of great meals were brought over, a melt-in-your-mouth four layered chocolate cake with fluffy sweet white frosting covered with shredded coconut being delivered.

What I intuitively recognized in those thirteen seconds as we sat at McFarland’s restaurant September before last is absolutely true.  We needed time together while we have it.  As others spend their last days and hours concluding their journey together, it becomes crystal clear.  I have an honor, the honor of being Caregiver to Mary Ann.  I am grateful not to have missed the chance.

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.

Mary Ann barely talks, and I can’t seem to stop talking.  I have just written two posts titled “Who am I” chapters one and two.  When does Mary Ann get to say who she is?

There are different stages in the journey of a Caregiver and CareReceiver team.  Some are at a stage in which each can speak for him or herself.  Some are in the stage in which the CareReceiver can no longer speak at all.  We are somewhere in between those stages, a little closer to the latter than the former.

Mary Ann has never been very talkative.  She has been a very private person.  She was never one to spill her guts to others.  Mind you, when she spoke, it was always pretty direct. 

Now, it is very difficult for her to get thoughts into words.  It sometimes takes so long that she doesn’t get a chance to get those thoughts out before the conversation has moved to the next subject.  Sometimes she seems not to be able to follow the conversation.  Other times, her words when they do come reveal that she is tracking the conversation perfectly and just needs time to get a word in edgewise.  When she does speak it is often so softly that what she says is lost to the rest in the conversation. 

I want Mary Ann to be as fully present as she can be at all times.  I want her to have a chance to be heard, to be listened to.   I want people to discover who she is.  The challenge for me is determining when to speak for her and when to just shut up. 

More times than I can count, when people new to us have interacted with us they have looked at me and referred to Mary Ann in the third person.  “How is she doing?”  “Does she want this or that?”  When that happens, I usually move my body in a way that brings her into the conversation’s physical space, and I relay the question to her.  I don’t snap back with “Why don’t you ask her?”  Also, I don’t want to force the issue, since sometimes she is not able or does not want to respond.   What I do know is that if people refer to her in the third person when she is sitting right there, it feels as they have concluded that she is not actually there any more.  It is as if at that moment, were she to ask, “who am I,” the answer would be “Nobody!”  She is Somebody, somebody special.  I want people to know that. 

Another odd little quirk when folks do talk to her, is that some raise their voice as if she has a hearing problem.  On occasion someone will put his/her face right in front of hers and shout.  Some folks use a sort of baby talk, as if they were talking to a toddler.  The tone sometimes sounds as if it is an attempt to be sweet to her.  Without intending to do so, actually it seems to diminish her presence as a whole person worthy of adult respect — as if she is a poor handicapped little person in need of them descending to her level.  It is hard to watch and listen when she is approached in a way that seems to make her something less than she is.  I am not confrontational with people when they talk in a way that feels inappropriate, since they are doing their best to be kind.  I suspect that I need to be more assertive and find a way to help them understand that it would be better to talk with her the same way they would talk with any other adult. 

Again, one of my greatest challenges in the role of Caregiver/Husband is to determine when Mary Ann wants me to talk for her, and when she wants to talk for herself.   I try to deal with that challenge directly by asking her if she wants me to talk or not.   Sometimes she will answer me when I ask that question, but sometimes the words just won’t come. 

One of the times it is most difficult to be sure I am talking enough for her but not too much is at the doctor’s office.  The doctors generally handle this pretty well.  We have been going to most of them for a long time.  When they ask her a direct question, if she can, she tries to answer.  It is especially hard when her answer does not at all reflect what I think would be a more accurate response.  Sometimes I can jump into the conversation and address Mary Ann, reminding her of the specifics that would suggest her first answer not to reflect her actual experience. 

At the doctor’s office especially, when I do speak for her, I immediately ask her if what I just said reflects accurately what she understands to be so.  As a Caregiver, I have to be especially careful that I don’t project on to her my perceptions and feelings and conclusions. 

To be able to determine accurately when to speak for her and when not to, to be able when I do speak for her to reflect accurately what she is thinking and feeling, as a Caregiver, I need to listen very carefully to what she says about what is going on with her.  I need to to ask her questions such as, how does it feel to you when this or that happens, when I say or do one thing or another. 

All the listening skills I have tried to develop over the years of counseling are important skills to apply to communicating with Mary Ann.  I have to look for non-verbals, read lips, listen for code words that give a clue to what she is feeling.  Then I need to do everything in my power to elicit words from Mary Ann, especially those times she is most alert  and connected.  I need to be quiet long enough to give her a chance to form the thoughts and get them into words. 

When shall I talk for her?  When I have listened carefully to determine what she is thinking and feeling, when I have been quiet and patient long enough to allow her to speak if she is able and willing, then it is my job to bring her presence into whatever the conversation so that those with whom we are conversing recognize and affirm her identity as a whole person.  She is Somebody, somebody special!

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.

Who am I?  I am dirt and water.  That is no metaphor.  It is a simple fact.  The human body is made of approximately 70percent water and 30percent dirt (carbon and minerals).  That answer may sound silly and irrelevant, but it is exactly what gives me my identity.  It is what allows me to remain a unique self-aware individual who knows who he is separate from the various roles he has had during his lifetime.  It is what allows me not to disappear into any of the roles and identities that are defined by others in my life.

Being clear about who I am at the most basic level, has allowed me to be a better child, parent, husband, Caregiver and whatever else has defined me over the years — and, for that matter, whatever else is to come.

By knowing who I am at the most basic level I can incorporate all that I have learned from the various roles I have had, the various ways I have been identified throughout my lifetime up to now.

By knowing who I am at the most basic level, I can have successes without wrapping my worth in them and I can have failures without losing my sense of value because of them.

Now, what’s with the water and dirt?

When I was growing up, we had a Sunday afternoon tradition.  We went for a ride in the country.  The purpose of that ride was for one thing to enjoy the scenery, see the sights and, in farm country, smell the smells.  I learned to distinguish the smell of pig farms from the smell of the farm on which cattle were raised.  Dad showed me the difference between timothy grass, alfalfa, wheat and oats.

After I was old enough to understand what was going on, I discovered that there was an underlying purpose to our drives in the country.  Dad was looking for property.  He had grown up on a farm, but worked his entire adult life in an office. He wanted to get back to his roots in the country.

I remember when he first described the place they had found.  Before I had seen it, Dad found the place he wanted.  It sounded like a dream.  Twenty-six acres, mostly woods and hills, with a creek separating the larger section from a smaller area of about six acres of flat and fertile land suitable for crops.

When Dad and Mom bought what we called the Farm, my life changed dramatically.  Almost every night of the week during the growing season when school was out Dad and I headed out to the Farm to work in the garden.  All day long on Saturday and Sunday afternoons after church we planted, cultivated, weeded, gathered and destroyed potato bugs and tomato worms, fought against cabbage worms, we picked strawberries, rhubarb, corn, tomatoes, and dug potatoes.

From where did the all that produce come?  It came from the combination of dirt and water.  How did it happen?  How did the dirt and water become transformed into tomatoes and potatoes, green beans and corn?  Yes, the sun was added to the mix, but the sun can shine on dirt and water all day long and produce nothing but warm dirt and warm water.  There was added to the dirt and water a spark of life.

That spark of life was contained somewhere in the germ of the seeds that were planted.  They were also made of dirt and water that had been formed into a seed containing a germ containing a detailed plan wound into a genetic code.  Something triggered the code that sparked the plan into motion.  Molecules of dirt and water were drawn together to build a factory powered by the sun, using a manufacturing process called photosynthesis.

The reason that the dirt and water became the plants that produced fruit made of the same stuff is that the spark of life was added somehow to the mix.  How and why did that happen?

Who am I?  I am 115 pounds of water and 50 pounds of dirt combined with the spark of life.  The result, a sensient being.  I am a somebody separate from every other somebody in the universe.  I am self-aware.  I can ponder from where I came and why.  I can wonder about who I am and seek to discover the root of my being.

That may all sound very remote and esoteric, words having no relationship with ordinary life.  I beg to differ.  What I do hour by hour, day by day, no matter what it is and with whom, happens because this puddle of water and pile of dirt has been sparked to be someone.  It is who I am.  I find it very reassuring to know the truth about who and what I am.  No one can take that away from me.  I may change what I do or how others perceive me, but I am who I am.

Now comes the inevitable question: Why?  For me, the reason I am a self-aware somebody rather than a pile of dirt and a puddle of water is that there is a Someone who has chosen to spark the life that grew me out of those basic compounds.  There is a Someone who wants me to exist.  That Someone has revealed the truth about human existence in an account of the history of God’s activity in lives of ordinary folks during a very specific few centuries of human existence.  The account of that history reveals a truth that cannot be inferred from the physical world we live in or any study of it, no matter how detailed and accurate that study is.  That truth is the unconditional love of the Someone who has sparked in us life, made us human, living beings, self-aware and wired to live in community with one another.  The pinnacle of that revelation came in a person called Jesus, designated the Christ, a real Somebody, who lived in the same stream of history of which we are a part.

Now, what about those of you who do not share my particular understanding of reality as I have described it?  Let’s go back to the dirt and water.  Whatever understanding of reality you have, whether with or without a spiritual dimension, the facts are the same.  Our self-aware humanity has emerged from a spark of life setting off a genetic code forming the molecules into our body and mind, thinking and feeling.  You are a unique somebody, different from every other somebody in the universe.  You have an identity separate from what you have done or do now.  You can draw strength from that.

The question remains, “Why am I who I am?”  If I believe God made me, why did he make me?  The answer to that lies in the mind of God. I cannot know why.  I can think about it, posit answers of one sort or another. I cannot know why God made me.  I am left only to praise and thank God and celebrate the life I have been given.

For those who do not accept the existence of a spiritual dimension to reality, the same is so.  We can postulate our reason for being.  We can recognize that we are simply a part of a process of mysterious origin.  We cannot know for certain why the particular substance of our bodies has been formed and sparked with life.  We are left to celebrate who and what we are.  We can seek to become more fully human.  We can seek to live in community, just as we are constructed to do by that genetic code.

In either case, our identity lies deep within us, beneath the things we have done, are doing and will do.  Knowing that allows us to be effective Caregivers, imperfect, but committed to our Loved Ones.  We retain our identity without despairing that our lives have disappeared into someone else’s needs.  You and I are dirt and water sparked to life.  We are a unique somebody of worth and value, and no one can take that away.

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.

Less than a year ago, I was Pastor Pete. Who am I now?

I liked being Pastor Pete.  In our tradition, as with most religious traditions, when a person is ordained into the ministry, it is for life.  I am still Pastor Pete.  There are a wealth of experiences folded into that identity.  I have been there when people have died, I have been there soon after people were born.  I have accompanied people through marriage problems, family crises.  I have ministered to people through a disaster, the Oklahoma City bombing.  I have done funerals for premature little ones the size of my hand.  I have done funerals for teenagers, young adults in their prime leaving children behind.  I have preached and done liturgies before hundreds.  I have gone through good times and painful times with congregations.  There is not enough space here to describe the variety of challenging and meaningful experiences that have shaped my identity as Pastor Pete.

That identity has not been my only identity, however.  Any who reads this post could list all sorts of identities they have had in their lifetime.  I have been a little boy, a son, a little brother, a kid whose identity was shaped by going to school, playing down at the swamp, jumping into piles of raked leaves, catching bugs, heading to the vacant lot for a game of Bounce or Fly, getting penicillin shots and taking those awful red penicillin pills, supposedly avoiding exertion on account of the Rheumatic Fever. That identity has come and gone.  I grew up and got well.

Then there was the identity as a singer.  That began when Mom claimed she heard me singing the melody of “We Three Kings” while I was lying in the crib at eight months of age after my brother had been practicing for singing at the Christmas Program that year.  I took voice lessons, sang in choirs, served as president and student conductor of five choirs from Junior High through graduating from college. I sang in a semi-professional choir earlier in my working years. That identity has come and gone.  I haven’t sung much for years.

I am a father.  We have two children.  There is an odd shift in identity that comes with children.  After children, I may have been Pastor Pete to some, Pete to others, but I became Dad to two, and Lisa and Micah’s Dad to many others.  It happens to most of us.  With children, our identity moves away from who we happen to be as an individual to who we are in relationship to someone else.  From the time the little ones head off for preschool and/or daycare, we become our children’s Dad or Mom.  Whenever we get full of ourselves in any other arena of life, coming home to children, going to school activities, getting them ready for bed or ready for school, feeding them, picking up after them, listening to their arguments with one another, dealing with behavior issues, serving in our role as parent will quickly burst our bubble and bring us back to reality. The role of parent has changed as our children have grown up, but I am still Dad and Mary Ann is still Mom.

There has been a new identity added to our reality in the last decade.  I am Grandpa.  Mary Ann is Grandma.  It is who we are now.  By the way, it is really cool!  That identity will stick with us from now on.

We all have multiple identities during our lifetime. While those identities all help shape us into the somebody we have become, some of them come and go.  Some of them stick.  The kid I was has come and gone but in some sense still lives in me.  My parents are both gone, but having been son to a Mom and a Dad still impacts how I think and feel.  I am still a little brother to four other people even though I am now sixty-six years old.  By the way, when those four are getting out of hand, I just observe that Mom and Dad kept trying until they got it right.  (You can imagine how far that gets me with them.)

Singing is still a part of who I am, even though I seldom do it.  It lives in my insides.  Music stimulates my soul and touches my heart.  I am a parent and take great comfort in the relationships with our two children.  I cherish my identity as Grandpa.

The identity as Pastor has molded and shaped my sense of self profoundly in the forty years of doing ministry.  While I am still by ordination a Pastor, I am not pastor to a congregation of people.  While being a pastor is part of who I am, my identity, it is no longer in a public setting.

There is an identity that became primary for me when Mary Ann and I married.  I am a husband, the husband of Mary Ann.  That identity has defined me for over forty-three years now.  Mary Ann and I have retained our individuality.  We have not disappeared into each other, but our lives are completely intertwined.

There is now a new identity born of necessity and grown into the center of who I am.  I am a Caregiver.  That identity cannot and should not be differentiated from my identity as husband. The Caregiving happens to be what being husband to Mary Ann includes at this time in our lives together.  When we commit to one another in marriage, it is not conditioned on health or wealth.  We marry a person, whatever that brings.  We don’t marry some ideal of what a husband or wife should be.  We marry a real person, who will grow and change with time and experience, as will we.  What comes, comes. I am now a husband and a Caregiver.

Who am I?  Am I what I do?  Am I a kid, a brother, a husband, a father, a Pastor, a Grandfather, a Caregiver, or am I something in addition to those things, something more than those things?  For me this is an exceedingly important matter. What sustains me is that I have an identity beyond what I do.

Let me say it plainly.  Mary Ann and I have no idea how long we will live.  No one does.  What if she dies before I do?  If my identity is solely husband and Caregiver, who will I be then?  Mary Ann has a very strong sense of herself.  She has a strong presence.  If I die before her, she will be Mary Ann.  She has never defined herself solely as a spouse.

My identity is rooted somewhere far beneath my various roles.  I am convinced that all of us need an identity that is not wrapped solely in one of the various roles we have had throughout our lifetime.  I am no longer a kid.  I don’t sing any more.  Our children are grown and on their own,  Our grandchildren do not live with us.  My brothers and sisters live six hundred miles from here.  I am no longer pastor of a congregation. If who I am is solely what I do, I am in a world of hurt.

For now, let me say this: The first answer to the question of who I am is, I am water and dirt.  I, like you, am made up of about 70 percent water and 30 percent dirt (carbon, minerals, etc.).  The final answer (as they say in The Millionaire) to the question who am I, lies in the answer to the question, Why am I a living, breathing, self-aware human somebody, rather than a fifty pound pile of dirt and a hundred and fifteen pound puddle of water?  My answer to that question will come in another post.  Stay tuned.

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 I sit here at my computer writing this post, Mary Ann is in bed and secure.  Even though the door is closed and the bedroom is in another part of our small townhome, I can see her in bed.  Sometimes electronics actually help!

This afternoon we made a stop at Babies R Us.  I ran in and purchased an A-V monitor set.  It includes a camera, video display unit and a portable audio-only unit that can be clipped to a belt.  What is especially important for me is the size of the video unit.  it has a seven inch screen.  For me that means that as I look at the computer screen, out of my peripheral vision I can see her movements.

After ending up back at the Dermatologist’s office to sew up again a large incision that had broken open completely when Mary Ann fell directly on the stitched area, I decided that I needed to either be joined to her at the hip or find some way to see when she gets up from the chair even if I am not in the room.

I called the manufacturer before I bought this set to determine how to obtain a second camera.  That way I can have one in the bedroom aimed at the bed and one in the living room aimed at her chair.  On Monday, I am going to check on whether or not I could buy another kit (the cheaper one without the audio-only unit) and have two screens as well as two cameras.  I would like to be able to have one in a spot in the kitchen that will allow me to see her from there or from the dining room table, providing even more security. After she was in bed this evening, I was at the dining room table and barely heard her calling.  She had tried to turn over in bed and ended up on her knees on the floor next to the bed.

It just worked!  As I was typing the previous sentence, I saw her moving around.  I checked on her and found her trying to turn over to face the opposite direction.  I was able to help her.  Her Parkinson’s has taken from her the ability to move freely in bed.  I would rather help her when she begins the task of moving than wait until there is a problem that might result in damage.

This new monitor will replace the audio-only baby monitor that we have been using.  One problem for us with audio only is that her voice has gotten so low in volume that it is very difficult to hear her calling over the sound of the television in the bedroom.  The television is Mary Ann’s version of a night light.  While having the television on in the bedroom is not recommended by those who study sleep patterns, it is an important part of Mary Ann’s world.

The security that the A-V monitor provides is not just Mary Ann’s security.  The prime goal is to protect Mary Ann from harm.  Not far behind that goal is the goal of my freedom and peace of mind.  When she is out of sight, I am always aware of her potential for getting hurt, mostly from popping up out the chair and ending up on the floor.  I can feel the stress relief that comes with having her in view when she is in another room.

One of the heaviest burdens of Caregiving is the loss of freedom to move about at will.  When she fell, I had just gone into the kitchen to get something for her.  To lose the freedom to move about the house would be intolerable.  One of my primary distractions when trapped at home is the computer.  I need the freedom to head down the hall, away from the television and concentrate on what I am doing at this desk.  This monitor, as long as it continues to work, gives me that freedom without sacrificing her safety.

There is no way to guarantee that Mary Ann will not fall and be hurt.  What this does is simply add to the practical tools for creating as safe an environment as I can within the limits of available resources.  While we cannot control what happens, we do have some control.  This is another way to use what power I have to help create a safe environment for someone no longer able to keep herself safe.

The monitor I chose is a Summer Day and Night Color Flat Screen Video Monitoring System.  The model number is 02500.  It is available at Toys R Us, or Babies R Us.   If you want to check it out, the web site of the manufacturer is, http://www.summerinfant.com. There was also a monitor I checked on that has a smaller screen but has optional software that allows the monitor to be checked online.  That one is called a MOBI Bundle Monitoring System and Internet Kit.  The website at which I found it was http://www.ActiveForever.com.

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.

Would you believe, he told us at our Parkinson’s Support Group meeting to take our daily antioxidants and low dose aspirin.  He is Mark L. Weiss, Ph.D. whose life is centered on doing research on the potential of what is called Wharton’s Jelly.  Wharton’s Jelly is found in umbilical cords, a non-controversial source of stem cells.  Let me add immediately that Dr. Mark pointed out that he is not a medical doctor but a Ph.D. Any choices we make concerning medicine, even over the counter medicines should be checked out with our medical doctor.  He did say that it seemed pretty safe to suggest doing what every doctor and most everyone else also suggests, that we take antioxidants and low dose aspirin.

His encouragement to do so comes with the answer to the question, why?  Parkinson’s disease is caused by the death of the neuron cells in the brain that produce dopamine.  What kills those cells is an oxidant as in “anti”oxidant.  What first popped into my mind when I heard that was, broccoli wins again.  Eat those antioxidants.

The process that sends those killer oxidants on the attack is inflammation. Oddly, one of the hints that inflammation can play into the process that produces Parkinson’s Disease came after the flu epidemic of 1918.  There was an increase in Parkinson’s Disease after that epidemic.  Non-steroidal anti-inflammatories such as aspirin reduce inflammation. That is why the Cardiologists suggest taking them — to reduce the inflammation in the heart.

What was exciting about Dr. Mark’s presentation at the Parkinson’s Support Group meeting tonight was that certain umbilical cord cells (UCMS) found in Wharton’s Jelly can produce a form of stem cells having properties that hinder inflammation, interfering in the cycle that produces the death of the Neurons that supply the brain with dopamine.  In addition, there is a bonus that results in the rescue of the neurons that are dying.  If that is not enough, there is evidence that those particular stem cells can be transplanted without triggering rejection.

Please understand that what I have just written is what was heard by a retired pastor who has no formal medical training other than making thousands of hospital calls, listening to multiple doctors who deal with Mary Ann’s many medical problems, and going to many a Parkinson’s Symposium.  I could easily have completely misunderstood.  I will email my blog address to him and invite Dr. Weiss to comment and correct, although I am sure he has much better things to do.  All who read this post need to understand it is just my take on what I heard.

What I left wtih tonight was not so much an expectation that there will be anything that comes of this research that will change Mary Ann’s situation.  It was more an excitement that there are possibilities for slowing down the progression of the disease in those diagnosed with Parkinson’s.  Even hope that may not change our situation is hope.

Tonight I gained a level of understanding of this disease that I have never experienced before.  I credit the knowledge and communication skills of Dr. Mark.  I can’t speak for the rest of the group, but judging from the questions, it appeared that most of us gathered in that room now understand the disease process of Parkinson’s as well as some Neurologists.

Gathering with a room full of people who understand what it is like to live with Parkinson’s Disease is comforting.  We talk the same language.  We can talk about things that would either bore others or cause them to feel uncomfortable.  For some reason I feel empowered just by knowing more about the disease process.  It demystifies it.  Knowledge is power.  That Dr. Mark and others in the research community know as much as they do, increases the likelihood that a number of approaches to treating Parkinson’s will emerge in the years to come.

Tonight’s Speaker: Mark L Weiss, Ph.D. Professor of Neuroscience at Kansas State University; Associate Director of the Terry C. Johnson Center for Basic Cancer Research; Founder of the Midwest Institute for Stem Cell Biology; Anatomy and Physiology, College of Veterinary Medicine.

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.

Today is the first day this spring we have been able to meet on the deck.  There is a dramatic change in the feel of the experience when on the deck rather than in the downstairs family room.  At 7:30am the birds are fully engaged in noisy and boisterous activity.  In that setting we have been buzzed by hummingbirds heading for the feeder.  A Cooper’s Hawk has come crashing through concentrating on its prey, oblivious to coming within inches a ducking head.  Rabbits have come by the deck with little fear of being so close to people.  Hungry birds have ventured to a feeder no more than a couple of feet from the head of one of us.   

The smells and the sounds, the sun and clouds and trees and gently blowing breezes calm the spirits of our little group as we begin with a few moments of silent meditation.  Our silence has as part of its nature the sounds of nature, as well as car sounds, mowers, dogs, airplanes, whatever else that happens to be going on during those moments.  The sounds of nature seem to dominate. 

We refer to our group as a Spiritual Formation Group.  The Group began many years ago.  I am not sure how many at this point — maybe seven or eight years.   The size has ranged from four to six members.  There are just a couple of us who have been there from the very beginning.  There are five of us at the moment.  It meets at our home since I need to be on call for Mary Ann’s needs.  The group emerged at a time in the life of the Congregation when there was a special emphasis on starting small groups. 

Our goal is to incorporate what we believe into what we do moment by moment each day — the ordinary.  We seek to support one another in disciplines that increase the likelihood of our finding the strength to live meaningfully no matter what comes or how fast it comes. 

It is no small order.  This morning in the course of our conversation, I had a chance to do some more processing of yesterday’s emergency trip to the Dermatologist to re-sew stitches that had been torn out of Mary Ann’s shoulder by a fall, stitches intended to close the gaping hole left by the removal of a skin Cancer.  I should add quickly that after a restless night, a painful morning this morning, she slept four or five hours.   She is doing well at the moment, down for the night (hopefully). 

Our group has a covenant that includes confidentiality.  Any specifics will reflect only my thoughts and comments.  The rest will come in general terms. 

Caregivers need a support system!  We cannot do this by ourselves.  Some of the support comes in the form of help with tasks, companion care for Mary Ann, food, all sorts of tangibles.  The support that is to be found in a Spiritual Formation Group is the nurturing of the spirit, the center of being from which deep personal strength comes.  From that deep well of strength is drawn the power to endure, even thrive, in the face of adversity. 

My approach to talking about Spiritual Formation is intended to reflect two elements of my intentions for this Blog.  One intention is to reflect my own spirituality, since that is how I manage as a full time Caregiver.  I am a retired Lutheran Pastor.  I have a deep faith rooted in a very specific understanding of Who God is and what God has done.  My relationship with God is created and sustained by a fellow name Jesus Christ.  I make no apology for that faith. 

At the same time, this Blog is not a parochial piece intended exclusively for folks who happen to share my faith.   The most basic element of my faith is the unconditional love reflected in the Christian Story (a true story).  That love has no bounds.  I am very comfortable framing the truth in humanistic terms, scientific terms, philosophical terms.  I feel no need to defend my faith or force feed it to others — witness to it, yes.  It is a part of who I am and how I cope. 

I will seek to do so and enjoy framing the deep well of strength in a way that is accessible to people who have another spirituality or no spirituality at all in their view of reality. 

In our group, we always use a book of some sort intended for use in a spiritual formation small group setting.  We are currently using book in a series of Spiritual Formation Guides produced by Renovare (http://www.renovare.org).   The chapter we were doing today is titled “Being the Good News.”  Our conversation revolved around the question, “…how do you seek to act as the good news in the world?” 

This morning my need as a Caregiver was to process with others what had happened yesterday, the fall, the broken stitches, the dripping blood thinned by Plavix, the emergency trip to the doctor to be resewn.  I needed to process it so that I could face the harsh reality that had I been beside her I might have prevented it, that I had not been calm and cool and collected, sweet and nurturing throughout the experience.  I needed to affirm what I had done that was appropriate to keep Mary Ann safe, to get her the help she needed, to care for her during and after the trauma.

The conversation in that small group, the processing, helped me to reframe the experience in a way that allows me to accept my failings, celebrate the good, and see the possibility for change. 

For those who don’t have a spiritual dimension as part of their worldview, having a small group option for processing experiences is equally important.  The goal is to reframe what has happened in a way that gives it meaning.  Seeking to become more fully human is not only a help to your Loved One but a help in your own survival.  Each event is an opportunity for growth.  That growth can lead you to a better quality of life as you become more able to get past the reactive primitive brain impulses to thoughts and actions that are both sensible, humane and life affirming. 

Caregivers need a healthy, well-balanced support system.  A small group, in my situation, a Spiritual Formation Group, can help provide the deep source of strength needed to endure whatever life throws our way. 

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.

One of my fears about falling was realized this afternoon.  We live in a very narrow margin of functionality.  We slipped outside the margin for a time today.  The result is an apparent need to change a pattern that has been allowing both Mary Ann and me moments of freedom from being tethered to each other. 

Yesterday morning was the procedure to remove another in a series of Basal Cell Cancers that have been appearing on Mary Ann’s back and upper chest.  The procedure was done in the Dermatologist’s office.  We like him.  He seems to be very committed to the field and always upgrading his knowledge and skills. 

His office, however, is right from the 1950’s.  It is very small, a narrow hallway leading to tiny rooms with pocket doors, bathrooms barely able to hold one person standing up, let alone somone in a wheel chair.  There is a nice flat screen television in the waiting room, among the old furniture.  The equipment doesn’t always work, but it is adequate, and procedures are done well.

The spot on the back of her shoulder was not large.  To guarantee that the perimeter of the patch of skin removed was clear of Cancer cells, a pretty large area of flesh was removed.  Each time a procedure has been done, I have watched each step.  The rooms are very small, so I always have an unobstructed view. 

It is always a surprise to me to see the size of the string of stitches when the the wound has been sutured.  In this case, it was at least a couple of inches long.  He sutures the lower edge of the epithelium, deep in the hole left after the circle of skin is removed.  That is a very tedious process, including a number of steps with each of the many stitches.  Then comes the suturing of the surface edges.  The round opening is pulled together into a line, not exactly straight, but close.  Again each stitch takes multiple steps. 

He made a point of closing the wound tightly since Mary Ann takes Plavix and aspirin.  The doctor observed that Plavix actually sometimes gives surgeons more trouble that Coumadin, a much more powerful blood thinner.  He wanted to be sure there would be no problem with bleeding. 

The day went well after the surgery.  Even though we had been given suggestions for dealing with pain, Mary Ann reported no pain.  The doctor called last evening to ask how she was doing.   There were no problems. 

Today was a good day in many ways.  Mary Ann went to her weekly small group meeting at church.  I was basking in the possibility of a water problem in our back yard turning into a beautiful garden and water feature.  Most importantly, some gossip came my way — good gossip.  The sadly empty building that used to be our Baskin-Robbins ice cream place — yes, I said ours, by squatter’s rights — may eventually open again. 

After lunch, I actually managed to do some cooking using a very complicated recipe.  Here it is:  Brown one large package of country style boneless pork ribs in a large frying pan, then transfer them to a crock pot, add a bottle of KC Masterpiece barbecue sauce and cook them forever.  The recipe is came to us from Larry and Jolene, when they brought over a huge and sumptuous meal.  My creative addition to the recipe is to open a couple of cans of beans and add them to the crockpot a half hour or so before eating.  Enough of the culinary diversion.

Mary Ann wanted a snack.  We had some ice cream.  She ate part of it and decided there was something in it.  I find those hallucinations to be especially annoying, since once they appear, the only alternative is to throw away perfectly good food for no good reason.   An hour later, Mary Ann popped up out of her chair, and as I suspected had decided she needed another snack.  I couldn’t pass up an comment on the last snack’s fate, and then I headed for the kitchen to see what I could find for her. 

I left her standing beside the transfer chair.  As soon as I got to the kitchen, I heard the familiar thump of her falling.  It was in an open carpeted area.  She hit nothing that might hurt her.  Normally, such a fall is just routine.  Not this time.  She landed directly on the shoulder that had been stitched up yesterday morning after the surgery on the skin Cancer. 

I knew it would be so, and as soon as I got her to the bedroom to look at it, my fear was confirmed.  The blood was running.  I headed for the case we have filled with first aid supplies we have gathered after past experiences like this.  I got a thick surgical pad and some tape to try to contain the bleeding until we could get back to the doctor.  The tape I had  (too narrow) combined with the awkward location of the incision resulted in blood seeping through to her clothing in spite of my best efforts. 

 I called the doctor’s office and was advised to do the obvious, bring her in.  The doctor had to send home a patient who had been stuck and prepped for a procedure because Mary Ann’s wound could not wait.  She had done something he had never seen before in his career (started medical school forty years ago).  She had torn open the two inch stream of stitches on the top and deep within the wound.   He had to start over completely.

The afternoon grew in complexity as it went on.  The doctor had sent home the other patient prepped for a procedure.  As he and two assistants were doing a cluster of preparatory tasks for Mary Ann’s repair, the doctor’s preschool-aged grandson came running down the hall.  He poked his head in.  He was not put off at all by what he saw.  Obviously he had wandered in on procedures before.  What added to a sort of chaotic tone that was developing was that the little boy’s mother. the doctor’s daughter-in-law came down the hall holding a cloth to her forehead.  She had run into a door and was also in need of stitches. 

The doctor left Mary Ann to attend to his daughter-in-law.   The assistants continued the prep, obviously a little unsure of how to proceed.  During that time the two assistants were sharing with each other their concern that they both had to leave and could not stay much longer.  One  had an appointment to take her two year old horse to be broken.  The other had to pick up her preschooler (who happened to be attending the preschool at the church from which I retired last summer). 

The doctor had done some preliminary work on his daughter-in-law so that she could wait until he was done with Mary Ann for her stitches.  When he returned, the imminent departure of his two assistants became clear.  The word went out to the office manager who had been with him for much of his practice to scrub up so that she could take over when the assistant’s left. 

Through all this, every time we checked with Mary Ann, she said she was fine.  She lay a long time on that table as he redid the entire suturing process.  It was long and tedious.  As time went by we all began to appreciate the craziness of how the afternoon was going.  They all commented on how uneventful the day had been up until we injected some drama into their day.  I told them that if it was okay with them, we would opt out of any future need for excitement being added to their day. 

The moment, Mary Ann is in bed.  As a her Caregiver, I have a dilemma.  First of all, I bear responsibility for what happened.  Had I been there with my hand on her gait belt, I could have prevented the fall.  Secondly, I was not calm and reassuring after it happened.  Instead, my frustration with the situation spewed out of my mouth.  Gratefully, I moved quickly and got done what needed to be done.  My dilemma is the implication this has for how I go about my Caregiving task. 

I have felt free to be in the kitchen for a time, go down the hall to my office to be at the computer for short times during the day,  go to the end of the block to get the mail.   At least until the stitches heal fully, this episode suggests that freedom no longer to be an option.  Mary Ann simply cannot keep from getting up and going.  I need to be there immediately to offer an elbow or put my hand on the gait belt. 

Tomorrow, I need to follow through on getting an audio-visual monitor from Babies R Us, or wherever I can find one.  If I can keep the receiver with me wherever I am in the house, maybe Mary Ann and I will not need to be joined at the hip every minute of every day.  That much closeness would all but assure both of us going completely crazy.   It would not be a pretty sight.

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 just closed the back door, the window in the dining room, the front door, the garage door, and the door between the house and the garage.  From late fall through early spring, this is pretty much a daily routine.  Yes, even in the dead of winter (which is not all that big a deal in Kansas), the doors and windows are opened each evening around supper time. 

During the first fifteen years of Mary Ann’s Parkinson’s diagnosis, no one told us about the hot flashes.  When I asked about them, there was only a blank stare.  Mary Ann went through all the usual hormone treatments — multiple doses.  Nothing worked.  Finally, she stopped taking any hormone therapy.  It just made no difference. 

Finally in just the last few years we have heard sweats listed among the non-motor symptoms of Parkinson’s.  After a time of feeling irritated that no one had mentioned it before and lamenting all the misguided efforts at trying to treat them, we were relieved to just to know that it is part of the Parkinson’s gifts to Mary Ann.  They are no easier for her to endure, but at least we are no longer wasting our time looking in all the wrong places, trying to find some elusive solution to the problem.

I had heard about hot flashes long before the Parkinson’s.  Since Mary Ann was diagnosed so early in life (45), she went through the normal menopausal hot flashes.  The hot flashes, the sweats, continued long after menopause had completed its transition.  They have never ceased.  As I have felt the heat and changed soaked clothes and wiped the sweat running down her neck, I have come to recognize hot flashes to be much more than a minor inconvenience.  When they come in full intensity, Mary Ann looks as if she will burst into flames any moment.  She radiates heat that can be felt from inches away, as if she were some sort of biological space heater. 

There was a time in the progression of the Parkinson’s when if we had been asked, we would have responded that the hot flashes were the hardest part of the disease to endure.   

When the almost daily hot flashes come on, I need to respond quickly.  If Mary Ann happens to have on a long-sleeved top, it must come off immediately.  She is usually dyskinetic at the time, so changing clothes is no small matter.  Arms and legs are twisting this way and that.  After clothes are changed, the back door, the windows, the front door, the door to the garage and the garage door must be thrown open.  The colder and windier it is outside, the better.  Sometimes I get a wet wash cloth to put on the back of her neck.  Occasionally, she has ended up in the shower trying to cool down. 

As you might guess, summers in Kansas can be pretty tough at hot flash time.  I recognize that the general wisdom is to keep the thermostat no lower than 76 degrees when the AC is on, preferably 78 or 80.  Ours has to go down to about 72 until it feels like a refrigerator when the hot flashes kick in.  The AC works far too slowly to give much relief.  Eventually, either that round of sweats ends or the AC takes the edge off so that it is at least bearable.  Oddly, at other times, Mary Ann can be very cold, hands frigid. 

As a Caregiver, not only do I need to be ready to move quickly to cool her down when the hot flashes come, I need to have nearby appropriate layers for myself.  When it is in the twenties outside with a wind chill in the teens, I need to add layers to keep warm. 

Some of our most harrowing moments have been times that a hot flash has hit while we were driving.   While traveling the Interstate at 75mph (maybe a little more) trying to reach the passenger seat in a van with front seats separated by a console, to take a jacket off a seatbelted passenger who is broiling in her own sweat is a terrifying experience. 

It is not only Parkinsonians who have to deal with the sweats.  Many of those who are in the Spouses of those with Lewy Body Dementia online group talk about the sweats, asking if anyone has found some way to control them.  To my knowledge, no one has come up with a solution, even by asking his/her Neurologist.  

The sweats, the hot flashes, are just part of the deal.   They come after the Parkinson’s has been with the family for some years.  As far as I know, no one has pinned down the specific cause of the hot flashes.  Very many of the problems that come with Parkinson’s Disease, Parkinson’s Disease Dementia and Lewy Body Dementia do not reveal their etiology, they are reluctant to tell the story of their origins.  So many of the most troubling problems have their roots in both the disease and the medications used to treat the disease. 

Even the most expert in Parkinson’s Disease will admit that many of the motor and non-motor symptoms seem to emerge from some elusive combination of the disease process and long term side effects of the medications.  Without knowing a very specific cause, it is pretty much impossible to find a treatment to control those symptoms. 

As with so many of the troublesome additions Parkinson’s has brought into our lives, the sweats, the hot flashes are here to stay.  They refuse to be diminished by any treatment.  We are left to adapt the environment to accommodate their presence.  So, we open doors and windows when that will work, and we turn the AC down when outside air seems hot enough to initiate combustion. 

Hot flashes or sweats often do come at some point in the progression of Parkinson’s Disease.  Somehow knowing that to be so makes it easier to accept them and spend the limited time and energy we have figuring out how to adapt our environment quickly to diminish the discomfort those hot flashes bring. 

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.