The laughter therapy program has hit the road.  The Joy/Terry/Cherri serum moved on this morning.  I have suggested to them that they designate themselves The Three Therapists (like the three Tenors) and develop a supplemental source of income.

Mary Ann was determined to get to her Bible Study this morning.  We left for church while the three were still at the house.  Actually, it made the good-byes a little easier. The process of getting out of the house this morning resulted in our being a few minutes late for the Bible Study. She had a mild fainting spell.  Mary Ann hates being late, but the group was tolerant of us when we arrived.  I felt bad interrupting, but I knew Mary Ann needed the time with them.  Apparently, she did reasonably well there.

After the Bible Study, we headed to McFarland’s to eat.  Mary Ann did reasonably well there also.  At the end of the meal, she seemed to weaken.  I needed to accept the help of a thoughtful customer to get her coat on as she tried to stand in front of her wheel chair.

It was not long after we got home that she ended up in bed napping.  That happened just at the time Hospice Nurse Emily arrived to check in and do Vitals.  Mary Ann’s blood pressure was about what it should be for a twenty-five year old.  It vacillates so much that I am seldom surprised by how high or low it is when measured.

Mary Ann slept soundly for a few hours this afternoon.  She got up for supper, but was in bed again fairly early this evening.  So far she seems to be sleeping well.

While the Hospice Nurse was here for a while, and the workers were using power saws, providing some noise and activity, it just seemed too quiet around here with the crew from the north on their way back home.  I realize just how boring life is much of the time for Mary Ann.

Certainly all the activity did wear Mary Ann out.  It will be interesting to see how much sleeping she does in the next couple of days.  It is a very good tired.  What a wonderful way to become worn out.  I suspect that the endorphins released by the laughter are still working their healing magic inside of her.

The challenge for me will be to find ways to bring interest and stimulation into her days.  It is a daunting challenge.  I have tried before with very limited success.  The limitations that have come with her recent decline have made the challenge even more difficult.

The day will be busy tomorrow. At the end of next week, Daughter Lisa and the family will come to stay with us for about a week.  Combined with the remodeling project, I hope there will be enough to keep her engaged.

Right now, we need some prayers for Granddaughter Chloe (11 years old), who has not been able to shake a undiagnosed problem with nausea that has been going on for a couple of weeks.  Prayers are for a clear and concise diagnosis and effective treatments, please.

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I am witnessing a working Time Machine (the machine itself being completely invisible).  There were sitting at the table tonight, gathered around a couple of pizzas, four teenaged girls talking and laughing as if their bodies were not a number of decades older than that.  Mary Ann was fully engaged.  Her voice may have been soft, but she was a part of it.  She laughed along with the rest.

These four have known each other since the Fifth or Sixth Grade.  They have a world of memories since they went all through high school together.  They have kept in touch throughout the decades that have passed since then.  They graduated from East Aurora High School (in Northern Illinois) in 1959.  Every time the four of them get together, they continue on as if they have barely taken a breath since their last visit.  It is one continuing conversation.

They traveled a long way to come and see Mary Ann.  I know it means a great deal for her to see them again.  Of course, painfully, it will likely be the last time they get to be together.  I would not, however, bet on it since Mary Ann has demonstrated such resilience over the years.

Mary Ann began the day early again.  After the often fought battle to get the last hour or two of sleep in the morning, she was alert and responsive.  Again, as has happened often recently, she fainted a number of times on the stool as there was some otherwise healthy intestinal activity.

Volunteer Jan had arrived and took over after the fainting spells subsided.  Again, it the fainting seems to associate with both the kicking in of meds and intestinal activity.  Jan washed her hair and did her nails for her, while I headed up to the lake for a while.  The lake was beautiful.  I was immediately treated to views of some raptors, hawks, an eagle.  One of the hawks could have been a leucistic Red Tail Hawk.  I do not know enough about birds yet to be certain about that.  There were aome of those beautiful White Pelicans, flying in a relaxed formation of about twenty, circling over the lake, and over me at various times.  Again the bright white contrasted by the black portion of the wings that span five or six feet made watching them a breath-taking experience.

There was another less pleasant experience at the lake.  Remember the snow that I shoveled yesterday?  There was snow at the lake.  I drove only on paved roads, with little enough snow and slush and ice on them to avoid problems.  I got to my spot in the parking lot near the dam without trouble.  When I left, I went out the other side of the lot, up that road.  There was a fairly thin layer of wet snow on it.  I did fine as I approached the last few feet.  The top of the snow did not reveal that the road beneath dipped.  When I moved into that last bit of road, the van stopped moving.  I ended up stuck in a snow bank that did not reveal itself on the surface.

The simple solution was not so simple.  I tried to back out so that I could back down to the lot and go up the road on the other side.  The van would not budge.  The snow was wet enough that it just packed and formed an icy base under the wheels.  Having learned to drive in the winter in northern Illinois, my pride was hurt.

There were no others on the road in the area, until a passer by in a four wheel vehicle stopped.  It took a very long time of studying the predicament, trying to rock the van back and forth (tough with an automatic transmission).  Finally with the good Samaritan pushing on the front of the van, I was able to begin backing down the hill.  Once back in the parking lot, I was able to get back up the hill using the road by which I had come down to the lot.

I stopped for groceries in preparation for the visit of Mary Ann’s Friends, and made it back home.  After eating, Mary Ann stayed up much of the afternoon.  She did nap in her chair with her head on the rolling table that sits in front of it.  By the time Joy, Terry and Cherri arrived, she was rested enough to greet them and enjoy them.

Two are in the hotel and one staying downstairs.  My hope is, of course, that Mary Ann will sleep well tonight so that they can continue tomorrow from where they left off tonight.  The construction will continue with sanding sheet rock joints and the multiple corners tomorrow.  We will see if the construction activity moves the group to the hotel lobby seating area.  The birds entertained today.

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Mary Ann slept reasonably well last night — back to a more normal pattern of getting up to use the commode.  She was up before 6am for some food, but was willing to lie back down for a while.  She got up at 7am for food and pills.  She did pretty well, handling most of the consumption on her own — just a little help with some of the yogurt.  She continues to be able to hold her head up, at least for a while.  She is communicating a little better.

She was up for about two hours and is now back in bed.  Yesterday late afternoon she was up for about two and a half hours.  I am assuming that as time goes by she will be able to stay up during most of a full day, but there are no guarantees that will be so. I am certainly feeling better about how she is functioning now than I was two days ago.  There is a way to go yet to regain the pre-hospital norm, if that is to be the case.

One of Mary Ann’s friends from Junior High days is celebrating her 50th wedding anniversary today.  This was the 50th anniversary year of Mary Ann’s graduation from East Aurora High School  East High is, of course, an arch rival to West Aurora High from which I graduated a couple of years later.  We have been married almost 44 years — and they said it couldn’t work, a girl from East High and a boy from West High.

Cherri is thrilled with the celebration.  In these times, it is a remarkable thing to have longevity in a marriage. They have children and grandchildren that bring them great joy.  Cherri shared words of love and concern for Mary Ann, recognizing the contrast between her mobility and the options that mobility provides and Mary Ann’s plight.  She and Joy and Terry, along with Mary Ann made up a foursome to be reckoned with.  When they are together it is as if not a day has passed since they hung out together so many years ago.  They all care very much for Mary Ann and hate seeing that feisty lady they have known, trapped in a body that won’t cooperate and diminishing in mental acuity.  She has had such a wonderfully wicked sense of humor that could get you when you least expected it.

Along with the sadness at what has been lost, is something that is not so obvious, something that is important.  It is something that has not been lost, but found.  It is something that is there, available to all of us if only we will pay attention.  It is something that our situation makes more visible.  It sounds very trite to say it this way, but it is not at all trite.

Mary Ann and I live at the very core of life all day long every day.  There is deep and profound meaning in the simplest of tasks.  There is not a trivial moment in our days.  While there are great limitations on the options available to us for activities, there is no limit to the value of our time.  Our lives are filled with meaning.  Whether there is sleeping going on or time on the commode or eating or going in the car or sitting on the deck or watching the computer screen saver move through pictures of our Grandchildren, there is value attached to each moment.

Anyone who has lived long enough to have gone through painful times is likely to be aware of the meaning attached to the time we have.  Every moment we are in, contains all the time there is.  It is a moment of life, which my spirituality understands to be a moment intentionally given by the Someone who gives us life.

While the heart of Christianity often gets clouded by caricatures shaped by the loudest voices who seek to define what Christianity is, the truth is, it is a relationship created and sustained by a kind of love that is ultimately beyond human comprehension.  It is not a set of behaviors or a political position but a connection with One who produces good behavior to the degree we don’t ignore that connection.  The core is the relationship, not the behavior.

Back to Mary Ann’s day.  Edie spent the morning with her.  Apparently, Mary Ann got up and spent the morning engaging in conversation as well as watching and talking about the preparation of the meal.  We enjoyed a hearty meal, watched football for a while (of course, the Chiefs lost again), and then Mary Ann decided to lie down again.

Tonight is the time we usually attend a worship service.  At the moment, I am not very confident that will happen.  She has not yet dressed today.  I would be surprised if she would tolerate preparations to be out with people.  We will see.  It is still a couple of hours to Service time.  She is sleeping soundly at the moment.

As expected, she was not ready to try heading out in the car and attending the Service.  She was up for a while, ate a little, watched a little television and headed back to bed.

Tomorrow begins with the bath aide and includes an afternoon trip to the dentist.  It will be interesting to see if she has the stamina to do both.

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’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.