I asked Mary Ann if she wanted to go out to lunch.  A ridiculous question, since she always wants to go out.  The sun was bright.  The temperature headed for a balmy 33 degrees.  All but the major thoroughfares were still in pretty bad shape, but it was doable.

We ate at Perkins, then headed for some errands.  Excluding a pit stop at the house, we were out from 11:15am to about 4:30pm.  I guess we had a lot of pent up need for running errands.

We had an appointment this afternoon that related to obtaining the means to accomplish a project here at the house.  While we have limited resources, there is a need to do whatever we are able to do to make our environment as pleasant and stimulating and nurturing as possible.  Most of the days we have left together will be spent here at home.  It is reasonable to expect our freedom to get out to diminish as time goes by.

We have a wonderful, calming pondless waterfall that has been installed in our back yard.  There are probably thirty or more trees surrounding the area behind the house.  There is a secluded feel to the space.  The problem is that we can’t see any of it from inside the house.  We have to go out on to the back deck to enjoy it.

Town homes are close to one another and often have very limited window space.  One reason we chose this home was that it had more natural light coming in that most of them, but it still is very limited.

Before we added the deck, there was a small patio under a portion of the roof in the back corner of the house.  When we built the deck, it included that patio area and extended into the back yard.  We are going to enclose the area under the overhang so that it will become a sun room.  The interior walls will be removed other than a column to support headers that keep the roof properly supported.  There will be a six foot by nine foot area added to the interior space.  There will be sliding glass doors flanked by windows the same size as each panel in the sliding glass doors.  There will be light!! By the way, yes, there will be Vertical Blinds to provide privacy at night.

Through those glass doors and windows we will be able to see the waterfall and plantings.  I will be able to see the birds that come to the twelve to fifteen bird feeders clustered around the deck.  Mary Ann is just not comfortable spending time outdoors. This way she will be able to enjoy the waterfall and back yard from inside the house.

I won’t deny that this project, along with the waterfall, is an attempt to satisfy my need to enjoy the outdoors.  We are here inside this small living space all day long every day much of the time.  This project will bring the outside in so that our cabin fever might be diminished even when we are homebound.

This afternoon the commitments were made.  The project should begin some time early in February.  Who was it that said his goal in retirement was to spend his children’s inheritance?  Sorry, Kids!

Since we were out for most of the day, there were no nap times.  What is odd is that while Mary Ann has slept pretty well the last couple of nights, having had one or two long naps during the day, she seems unable to get to sleep tonight.  There has been almost constant motion in the bedroom.

Since there were no naps, I have not had any time to spend with the online Ignatian retreat today.  Mary Ann did get in bed early tonight, even though without sleeping.  When she first laid down, I read an email that included a link to a YouTube video of the Taizé community singing in worship.  That link took me to a treasure trove of Taizé music with video or slides.  I spent the next hour trying to listen and watch.  That music touches me deeply at a Spiritual level.

I used the word “trying” in describing that experience, since Mary Ann’s movements caused me to hop up every few minutes.  In between times helping her with the television remote or adjusting the covers or using the commode or having a drink of water, I watched the monitor wondering what was coming next.  I found the conflict between the deep feelings I was experiencing through the meditative music and the constant attending to Mary Ann to be almost unbearable.

It is just a part of the Caregiving task for anyone who is attending to another’s personal needs.  What is so difficult is that the person in need becomes the constant center of attention, with no opportunity to just relax and focus on something else.  Any other focus needs never to draw attention completely away from what she is thinking or feeling or needing or doing or considering doing.  The pieces of Taizé music are anywhere from two to five minutes long.  I was not able to listen to even one of them all the way through without at least one trip to help Mary Ann.  This time after she goes to bed is the time I count on to disengage a bit and focus on something to stimulate my mind.  I have been up and down more that a dozen times while trying to write this post.  It is at times like this that the task of full time caregiving feels the heaviest.

I will head back to the bedroom now in hopes that there will be some sleeping that will follow.  The odds are not good for that happening.

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A church in our area had a Blue Christmas.service scheduled this season. The church I served as Senior Pastor until I retired has had a couple of Blue Christmas services the two years before this one.  The holiday season is tough on folks whose situation does not match the wonderful loving family scenes portrayed in movies, television programs and the feel good stories that come at this time of the year.

There is, of course, nothing wrong with all the happy endings and sentimental stories that fill the media at Christmas time.  What is wrong for some is that what they see is not what they experience, or have any realistic hope of experiencing.

This Christmas Day did not seem very celebrative.  Mary Ann admitted on the phone with our Daughter to being sad.  I guess in that sense, we had a taste of what it means to have a Blue Christmas.  Before anyone who reads this gets concerned, we had a great family Christmas celebration last Sunday.  Our visiting children had to return home a little sooner than planned to avoid being trapped by the weather.

We were alone today.  We were trapped in the house yesterday and today due to the blowing snow, providing large drifts and sometimes impassable streets.  We will probably be here tomorrow also.  I had a bowl of cereal and Mary Ann a left over half-sandwich from yesterday for lunch.  She had frozen pizza tonight and I had the last of some leftovers.  Not much of a Christmas Day celebration.  We do have lots of snacks and sweets to satisfy our need for munchies and our sweet tooth.

There was great music available on the radio, but Mary Ann’s electronic medium of choice is the television.  I listened to some meaningful (to me) worship music while she was napping.  Music does not seem to hold her interest at this point.  There was very little on television that both fit her taste and lifted our spirits.  It was mostly silliness or violence.

I can understand why the expectation of intense joy and warm feelings can make it a very tough time of the year when the reality is so far from the expectations.  Reality is not so simple.  It is far more complex than just all warmth and happiness or all struggle and pain. It is most often a measure each mixed together to produce life as it really is.  The challenge is to keep it all in perspective, enjoy the wonderful moments, deal with the not so wonderful moments, and accept the value of each in creating the history of our lives.  Our past has shaped us and our choices as they continue to come day by day form us into who we are becoming. This Blue Christmas is just one day in the journey.

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If you have not heard “O Holy Night” sung by Kristen Watson, you have not heard “O Holy Night!”  Music has the power to break through defenses and touch us at the core of our being.  When trite or contrived or done badly, it has no power but to annoy.  When done well, with honesty and integrity, there is no defense that can repel its power to engage one’s spirit.

When Kristen sang “Gesu Bambino” there were no defenses left.  The last note with its quiet and gentle power, set the stage for “O Holy Night.”  Since retiring from the Pastoral Ministry, a combination of Caregiving demands and traveling to visit family have diminished dramatically the opportunities to attend the most powerful worship opportunities at Christmas.  Last night’s concert was an experience powerful enough to fill the spiritual longing that comes with each Christmas season.

What added to the deeply felt comfort was that I was able to sit with Mary Ann in the little raised area for those in wheelchairs.  My ticket was for a seat behind and a dozen feet away from Mary Ann. I couldn’t bring myself to sit down separated that far from Mary Ann.  It surprised me a little to feel so strongly the need to be next to her.  In the past, I have generally retreated into my own world at concerts, listening intently, immersed in the music.  Someone suggested the possibility, and I checked to be sure it was acceptable for me to sit in that area.  Companion Care Aide, Debbie, sat on the other side of Mary Ann.  As it turned out, there was no need for a trip to the bathroom during the concert.   All of us got to experience fully the entire program of music from silly to sacred.

There was a dimension to the evening that I did not fully anticipate.  Having retired from the role of Senior Pastor at the congregation I served for over a dozen years, I have not seen and talked with more than a handful of the members of that congregation since I retired a year and a half ago.  It was like a reunion.  It didn’t take long to realize how much I miss the people who had become a part of my life during those years.

There is an intimacy that develops between pastor and people that is hard to describe. The ministry is not as much a job as it is a relationship.  Certainly there are lots of other professions that include at least as strong a relational element.  I can only speak to the ministry, more specifically, my experience of it.  Last evening I redicovered how connected I came to feel to all those folks, and how much I have missed getting to interact, to talk and listen and kid around with people I care about.

The combination of celebrating a reunion of sorts as well as being lifted spiritually by the music made for a very good night out.  Mary Ann was greeted and engaged by many, and she too enjoyed the music.

After two days holed up in the warm house, protected against the elements (snow and bitter cold), we both needed the time out, distracted by something other than the television.

The change in the medicine mentioned in last night’s post seemed to have the hoped for consequences.  There was a return to a more normal level of intestinal activity almost immediately on discontinuing the generic Mestinon.  Today has been a fairly normal day.  Mary Ann got up early, then took a two and a half hour nap.  We got out to lunch at BoBo’s, headed to the Honda dealership for a quick minor repair of the CD player in the van, and visited the home of a friend, one of Mary Ann’s closest friends from almost the very first day we arrived here nearly fourteen years ago.

Tonight Mary Ann had some pain that needed a nitroglycerin pill.  Those are always scary moments, although not at all uncommon for folks with heart blockages such as Mary Ann’s.  The pain subsided after taking the pill.  She woke up a few moments ago and needed a trip to the commode.  The Thursday people are back.  She wanted to know what the next family was going to do.  She insisted on closing the bedroom door while she used the commode so that they could not see her.  I hope she is able to get back to sleep, and that she has a restful night.

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I am sure there are a variety of media folks trying to get a clear handle on the reasons for the continued success of the movie “The Blind Side.”  We saw it today.  It is the true story of an essentially homeless teenager, accepted into a family, finding his way to success on the football field.  Thematically, it seems to me like the story of Susan Boyle who has become a metaphor for a nobody being discovered to be a somebody.  It touches the longings in most of us to find fulfillment, to come into our own in a way that is clearly visible to others and, more importantly, to ourselves. I suppose it is the same reason that “The Man from Snowy River” has always struck a chord in me every one of the fifteen or so times I watched it in former years.

I am not really sure how Mary Ann felt about it.  Her comment at the end was, “Did we end up in the wrong movie again?”  The last time we went to a movie, she had gotten in her mind that there was another one we were going to see.  When I asked her what movie she thought we were going to, she referred to an interview this morning on the television with Robert DeNiro about a movie he is in.  I did not see that interview.  In both cases, I had only talked about going to the movie we saw, and had not at any point mentioned the other.  At best, communication is a difficult thing.  Since Mary Ann is not verbal, it is hard to know what she is thinking.  I talk enough that she needs to tune it out.  As a result, I can say one thing, and she can have something completely different in her mind.  It is hard to know how many of the miscues are simple communication problems and how many are precipitated by the dementia that has begun to show its face on occasion.

On another note, there is a dilemma emerging that impacts my role as a Caregiver.  In a matter of about 48 hours, I received three overtures that would ultimately involve commitments of time.  Committing time to something other than caring for Mary Ann is no small matter.  I have seen just how stressful it is to have time pressure enter the picture when Mary Ann’s needs come without warning, often demanding immediate attention.  I can’t count the times I have had to get off the phone or at least excuse myself for a moment, when Mary Ann popped up and headed toward the bathroom.

It became clear very soon after I retired, that I could not count on being able to keep commitments if I made them.  Every commitment had to have an easy way out, in case Mary Ann’s situation demanded my attention.   Even tasks that don’t have appointments to keep pretty tough to accomplish, since the tasks that come with the caregiving role, make it tough to get a long enough block of time free to concentrate on anything else.  Those who volunteer to spend time with Mary Ann have busy lives of their own.  There are not a large number available to cover multiple times for meetings or whatever.  The cost of using paid Companion Care from the Agency we sometimes use prohibits making many commitments.

If I add commitments that use up all the time covered with Volunteers, I may as well go back to work.  One reason I retired was that it was too hard to move between working and caregiving wtihout time for rest and renewal.

With all that said, there must be something else going on in my thinking, something of which I am not fully aware that has caused me not to immediately decline the overtures.  I have accepted one.  It allows a great deal of flexibility and is likely to be very satisfying.  It is simply providing a sounding board for a friend from a former time.  While I may decline the other overtures, I am actually considering them.  I know too little about them yet to actually make a decision.

I suspect that part of the reason I have not dismissed the overtures out of hand, is my need to feel useful outside of my caregiving duties.  It is challenging to realign my thinking and feeling to be able to feel fulfilled and valuable without external validation.  At a spiritual and intellectual level, I can find fulfillment without affirmation.  My insides, however, are not so mature and selfless. At the very least, it is nice to have been asked.

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There are a couple more of observations on Mary Ann’s appointment with the Cardiologist, Dr. M, on Friday that have come to mind today.  They were comments that he made may be of interest to other Caregivers and Spouses.  I mentioned them in passing in last evening’s post, but they seem to me to warrant more reflection.

As I mentioned in last night’s post, I had brought some information from the Internet on a medication that seems to offer a an option for keeping Mary Ann’s blood pressure up when she is standing, to keep from fainting, without raising it when she is lying down, the time it is already too high.

I had brought the information to his office earlier in the week to allow time for him to look it over.  He didn’t see it until he studied the chart before coming into the Examination Room.  He did take time to read what I had brought.  When he came in he said that he thought the medicine sounded very appropriate.  In fact, he indicated that he appreciated the information and would consider using for others when the need arose.

He added that he was not at all uncomfortable with patients bringing in information.  He did not perceive it as a threat.  Not only was I grateful to hear that, but it impressed me as an attitude that any of us, Caregivers or patients, should look for in a doctor.  Dr. M is confident enough in his role, that he is not afraid to deal with any sort of question or suggestion.  He will answer the question if he can and tell us if he can’t.  He will take suggestions when they are good ones, and explain why if they are not good suggestions.

I have the advantage of being in an online group of folks who have all had years of experience dealing with Lewy Body Dementia and often Parkinsonism if not Parkinson’s Disease itself.  The thoughts and ideas and suggestions there are very helpful since they have been tested in real world situations.  One thing may work for one person and not work for another, so the suggestions can only be just that, suggestions, when taking the information to the doctor.  Bringing an arrogant attitude to a doctor’s appointment is sure to produce an unpleasant result.  I suspect that doctors feel the same way about arrogant Patients and Caregivers as Caregivers and Patients think about arrogant doctors.

Another conversation the Cardiologist had with us was triggered by my asking if the Congestive Heart Failure that took us to the hospital actually demanded a hospital stay.  I told him about the tough time we have had since the hospitalization.  He suggested that if we come again, we ask if it would be possible to monitor her situation for a few hours rather than admitting her right away and starting a regimen of medicine administered intravenously. Again, if we explain our reason for asking rather than simply being demanding, it might impact the doctor’s decision.

Dr. M made the observation that doctors factor in their assessment of the Caregiver or Patient’s wishes concerning whether or not they want to be admitted.  I inferred from what he said that there is a sensitivity about whether or not Caregivers and Patients feel able to handle the situation at home, when deciding whether or not to admit the Patient to the hospital.

We have a pretty good system here at home for dealing with Mary Ann’s problems.  If (when) we end up in the Emergency Room again, we will evaluate carefully the value of being treated at the hospital against the toll a hospital takes on her ability to function.

In Mary Ann’s case, that might have meant getting the shot of Lasix and checking the Cardiac Enzymes for a few hours to see if they stayed the same or declined.  While sometimes I feel pretty overwhelmed by what is already needed to give the care that is necessary, I think we would even be able to deal with IV meds at home, as long as a nurse put the IV in, and a nurse would be on call in case it got pulled out and needed to be inserted again.  It is too bad that our system of medical care does not make more allowances for care to be given at home.   It is easier on the patient (more rest) and it would seem to be less costly.

The day was quiet.  PBS had a number of specials today with Celtic music.  I told Mary Ann that I wanted to take charge of the television today and watch them.  As I have metioned before, in our division of duties, she is the boss of the TV remote control.  She stayed awake to listen to the music with me.  She ate pretty well.  She has been a little restless tonight.  I hope she settles in for the night soon.

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Today was a good day in most respects.  Mary Ann got up, ate, took pills and got dressed in anticipation of Volunteer Jan’s arrival.  Jan did her hair and nails, a real treat.  Mary Ann had eaten a good breakfast with some help.  Around noon she ate a half sandwich, chips, Pepsi, and large and tasty chocolate chip cookie that Jan had brought.

Mary Ann was up all day, watching football — her choice.  The Chief’s won!!! She was awake and mobile enough for us to go to the Evening Service at 6pm.  She ate a little supper before church and headed to bed shortly after church.

This was pretty much a normal day even by pre-hospital standards.  So far it appears that our new normal will include a little less mobility.  Eating by herself was a challenge before the hospital stay.  She now needs help much more often than before.  Walking unaided seems to be less of an option now.  It seems as if in most other areas, we are back to pre-hospital stay levels.  That is pretty encouraging.  I won’t deny that the last couple of weeks have been scary and stressful, with lots of fears about the possibility of not regaining any of what had been lost.

Maybe it was the barometer change today, but my time away this morning was not so refreshing as usual.  The rain did not allow the long walk that releases the mood-lifting endorphins.  I sat in the car enjoying the peacefulness of the rain at the lake, listening to a CD.  The Taizé Music seemed to open a certain vulnerability to thoughts and feelings that usually don’t have the time or space for attention with the moment by moment demands of the caregiving.

I am embarrassed at the self-centeredness of the thinking, but I have never pretended to be perfect — far from it.  I began thinking of who I am as an individual, separate from my role.  I thought of all sorts of things I have not yet experienced in life, things that most likely will never come to be.  I am not absolutely sure that I would really do some of them even if I had the chance.  That is why I titled this post “imagined Possibilities.”

Imagined Possibilities:

  • Singing with an Early Music vocal ensemble.
  • Spending a week of study and reflection at Holden Village.
  • Hiking a section of the Appalachian Trail.
  • Birding in New Zealand, hiking to see some of the waterfalls.
  • Seeing the Snowy Mountain region of Australia, visiting each part of that huge country.
  • Visiting Cornwall England and searching out my Father’s ancestral home there.
  • Visiting County Cork Ireland, from which my Paternal Grandmother came.
  • Heading off to Poland and Germany to see where my Mother was born (a German settlement in what is now Poland).
  • Spending time at the Taizé Community in France and singing the music, having a chance to serve as a Cantor.
  • Seeing some of the National Parks with my own eyes.
  • Going on Spiritual Formation retreats at various places in the US.
  • Probing with great minds the intersection of theology and Quantum Physics (at least listening and questioning).
  • Attending organ recitals and hearing great choirs and orchestras.

What is so selfish about all this, is that Mary Ann has lost the freedom to do so much more than have I.  This morning just opened a bit of sadness about what I might have imagined for myself.  I don’t know all the things that Mary Ann would like to have done.  Once I was asked where I would like to go if I could, and when I mentioned Australia, Mary Ann said she would like to do that too.  We have both talked about never having seen even the Grand Canyon.  We talked about going across Canada on a train, traveling to see the fall colors in New England.  We got to visit England and Northern Europe forty three years ago, and had talked about wanting to go back, especially to England.

I know intellectually, and most often viscerally, that life is lived wherever each of us is.  There is no need to be in some special, exotic place to live life to the full.  The grass certainly is not greener on the other side of the fence, as they say.  It was just a moment of imagined possibilities and some sadness at what will not be.  No matter what any of our circumstances are, all of us have things that are beyond our reach, things we cannot have or experience.  We can either face the loss of those imagined possibilities, grieve their loss and get on with life, or spend our precious moments stuck in self-pity.

I have the privilege of caring for someone I love.  There are so very many who would give anything to have that privilege.  I guess part of living this life to the full is allowing a moment of sadness into it.

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Finally!  We came home around 3:30pm today.  While the staff at the hospital was wonderful, and Mary Ann had excellent care, the dementia has increased dramatically.  Physically, she is fine.  We are back to normal, riding the margin between heart issues and Autonomic Nnervous System issues (fainting due to sudden drops in blood pressure).  It is not, of course, where we would choose to be if we had a choice, it is just what is so.

From the very first sleepless night, the first night we were there, the decline has been steady.  Last night was terribly difficult.  I put up the rails on the bed so that she would not get up and try to walk by herself on a very slippery, very hard floor.  She just could not accept that the catheter allowed her to stay in bed rather than head to the bathroom.  She saw people and animals and messes here and there.  Today she described in detail a busy cluster of bees on the floor at some time during the night.

I sat beside her on her bed for fifteen minutes to a half hour a number of times during the night.  At one point when she was awake, in the middle of the night, I checked my watch to see how much time there was between the need for me to get up and respond to her or help her.  The time was usually between ninety seconds and two minutes.

I realized that if we were required to stay another night, I would need to arrange for a paid companion so that I could get some sleep.  The constant nighttime needs are more than I can handle and remain rational, patient and helpful, after just two or three nights like last night.

Talking with the doctors helped clarify just how important it was to get back home to a stable routine and familiar setting.  They agreed that the additional tests being considered would not serve any real purpose.

While there were differing opinions by the two doctors and the Physician’s Assistant, two out of three felt that there was no compelling reason to expect more vulnerability to Congestive Heart Failure than there has been since the first bout five years ago.  We are going to return to our pattern of life to the degree the dementia will allow.

Mary Ann decided to go to bed at 5:30pm this evening. She has been up and down a a few times already.  Of course, I won’t know how tonight will go until morning.

I had mentioned in passing to one of the nurses that I appreciated having all the folks at the hospital with the care recognizing that Mary Ann and I would pretty much be on our own to deal with the aftermath when we got home.  I suspect she mentioned it to the Social Worker at the hospital who came in to talk with me before we left.  It is the norm that a Hospital Social Worker will check to see what if any needs there might be when a patient goes home.  This time the questions indicated some extra effort at listening to our situation.

The Social Worker mentioned that the nurses had spoken well of the care being provided Mary Ann.  Since I am no longer in a role that provides opportunity for external validation it was especially meaningful to hear those words of affirmation.  The Social Worker seemed to feel very good about the support system we have, from family and the congregation.  She sees folks who have little or no support as they try to care for a Loved One.

The day tomorrow is a full Wednesday.  It will be interesting to see how Mary Ann does with all that will go on.  I am going to continue our activities based on the assumption that alertness and the ability to track will return and the hallucinations will diminish. It that improvement does not come, we will adapt.  It is what we do.

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.