March 29, 2010

The Power of Touch

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , |
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Don’t worry, this post is barely rated PG.  A prior post was rated PG-45.  That was to make clear to our children that it might contain too much information about their parents love life.  Since I am a Pastor, we, of course, had our children by virgin birth.

Before talking about how touch has impacted Mary Ann and me in recent history, today was in some ways a continuation of yesterday.  Her blood pressure was 180/100 first thing this morning.  There is no way I would consider giving her medicine to raise her blood pressure given that reading.  Even with BP that high, there was a little fainting in the morning.

Volunteer Edie spent the morning with Mary Ann.  There were no problems with fainting.  After lunch the challenging intestinal activity resumed for a while, except for the fainting.  That task is more manageable when there is no fainting.  I am longing for the resumption of more normal regularity, demanding less assistance.

One of the unexpected benefits of Mary Ann’s illness is that it demands more touching.  I grew up in a non-touching family.   I was well into my thirties before I greeted Mom with a hug when visiting.  Before that it was hi to Mom and a handshake for Dad.  Gratefully, through a variety of circumstances that changed, especially with our children.

When a marriage has caregiving added to the relationship of husband and wife, there is an intimacy that grows of necessity.  I am holding Mary Ann many times a day.  My arms are around her to move her, lift her, shift her, dress her.  Prior to the addition of the caregiving, we were not very demonstrative and openly affectionate.  Now, I often linger with a hug when doing one of the tasks that requires putting my arms around her.

I have little doubt that there is an intimacy in our relationship now that we might never have experienced without the needs brought by the Parkinson’s and the complications that have come along with it.  Of course, neither of us would have chosen this way to add intimacy to our relationship.  It is sort of like finding a pearl in a pile of poop. (Am I not poetic!)

Last night and this morning were helpful times for me Spiritually.  With the complexities of Mary Ann’s personal needs, her napping, the vagaries of the blood pressure and dementia, we have not gotten to church very often.  Private devotional time does not substitute for corporate worship which provides community and an encounter with the core message coming from every direction.  Time alone with tools that help focus one’s heart and mind on the presence of God is an important mechanism for Spiritual growth.

Last night, the computer provided access to music that became a means through which the message of God’s unconditional love washed over me.  There was some Taizé music.  The there was a group named Anuna (sang in Riverdance).  Much of their music is ancient church liturgical music.  I played again the CD that includes “The Deer’s Cry,” which is an arrangement of the St. Patrick’s Breastplate prayer with which he began each day.  During the time I was listenting to the CD, I turned the lights in the house off, except for a votive candle on the mantle in front of a small iron Celtic Cross, casting a shadow on the wall.  Those are helpful times that allow my spirit to settle.  It was a help after the difficult day yesterday.

This morning at the lake, I listened to more of Anuna and some more Taizé music.  There was a passage from Jeremiah (29:11-14) and a couple of Psalms (100 and 101) that provided some grounding for the morning’s music and nature watching.  There were only a few birds, but the sounds of frogs and little critters of one sort or another filled the air as I walked along a marsh area (reminiscent of my childhood days playing at the swamp).

This afternoon, I had a little time during one of Mary Ann’s naps to sit out on the deck for the first time since the remodeling began a few weeks ago.  The signs of spring are slowly coming into view.  We do not have a secluded cabin in the woods, but as the leaves come out and the greenery flourishes, the little space at the back of our home will provide some of the nurturing environment I need to stay whole in a very fragmented and disjointed world in which I have very little say about what goes on.

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.

 

March 25, 2010

Volunteer Day

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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On Wednesdays, Volunteer Coordinator Mary, tries to schedule folks who are available during the day to spend time with Mary Ann.  Usually one or two of the slots are filled.  Today three of the four slots were filled.

Mary Ann got up early today, 7am.  By 7:30am, Volunteer Eva arrived to spend a couple of hours with Mary Ann.  That freed me to spend an uninterrupted time downstairs with the Spiritual Formation group, just Paul and me today.

Bath Aide Zandra arrived around 9am.  Again today, we chose not to take the morning meds until after Zandra was done with Mary Ann’s shower, hair and getting her dressed.  There had been some fainting earlier, when I was helping her with some bathroom duties, but Zandra had no such problems.

Next came Kristie who cleans the house each month.  I keep the kitchen counters clean and maintain the place in between, but she does the most hated task of dusting.  There is a thorough vacuuming, bathrooms cleaned (although I disinfect the stool each morning when I clean out the commode). The house always feels and smells sparklingly clean when she is done.  Today, the living area was off limits for cleaning since there was active sanding of sheet rock mud going on.  I will gladly do some vacuuming when that job is done, and I will not so gladly do some dusting and return the things I removed for that part of the project.

While Kristie was finishing the cleaning, Volunteer Rebecca arrived.  She spent time with Mary Ann while I enjoyed a meal with friend and former parishioner.  John has been a great support over the years, serving as what we called a Care Partner during the last half of my time at my former congregation.  He is someone with whom I can talk openly about our home situation and the challenges that come.  He was tuned in to the recent transition to Hospice Care.

I returned home for the transition between Rebecca and Volunteer Clarene.  Clarene spent the rest of the afternoon with Mary Ann while I took some much needed time at Home Depot and Lowe’s dealing with a couple of items needed for the construction project.

As promised, I returned with ice cream from Baskin & Robbins.  Mary Ann seemed to have been alert and awake all day long.  After a little time watching the news, Mary Ann needed to go to the bathroom.  When we were done, she said she wanted to stop by the bed on the way out.  I wondered out loud what she was planning to do at the bed.  Still having some residual feistiness that had re-emerged during the visit of the Three from the North, she responded, “None of your business.”  I could hardly stop laughing at her wonderfully “smart-ass” response.

She is still in recuperation mode and decided to get changed into her pj’s and get into bed.  It was only a little after 6pm.  She has been dozing and watching NCIS since then.  She will take her night time meds at the usual 8:30pm and, hopefully, be down for the night.  Actually, there will very likely be two or three snacks at various times during the night, since the ice cream spoiled her appetite for supper.  You would think by now I would remember not to offer ice cream late in the afternoon.

It seemed to be a good day for Mary Ann, getting to spend time with so many whom she counts as friends.  I was able to have time to do some things for myself.  Tomorrow is a day we have to ourselves, no appointments or visitors expected.  I need to start thinking about what we can do that will provide something to grab Mary Ann’s attention and add interest to her day.

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.

 

March 21, 2010

Confusion Keeps Me Close

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , |
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She wondered if Daughter Lisa was looking for an apartment for her and the girls.  I realized quickly that there had been a dream/hallucination/delusion at some point about our Daughter and Son-in-Law.  Mary Ann was convinced that Denis had asked for a divorce.  When I explained that they were solid as a rock, happily married and there was no divorce talk there, she said she had wasted a lot of time with her stomach in a knot.

Then came a part of the dream that she even thought was pretty silly.  There were Mormons who were trying to take over Denis’s Dad’s farm.  I guess they were some of his brothers, who were trying to talk him into becoming Mormon.  I have to say I am at a complete loss to figure out from where the scenarios for some of the dreams/delusions/hallucinations come.  Many seem to simply be misfiring neurons that use bits and pieces of material residing in distant corners of the memory banks.

When she insisted on getting up early, I knew today would be a difficult one.  I thought there might be some napping, freeing me to do other things.  She was up most of the day, confused for the majority of the time. When she is alert and just on the other side of lucid, it is more difficult for me to manage than many of the other challenging times.  Like many who are retired some days it takes me a while to figure out what day of the week it is.  I did not try to count how many times she mentioned the day and got it wrong or asked what day it was. More than once, she thought it was Easter.

There were things (invisible to me) one place or another in the house, things that needed explanation or needed to be picked up or dealt with in some way.  She stood up dozens of times to do something, often not knowing what.  I could not leave her side for more than minutes. It helped a little that there was an NCIS marathon on television.

She did eat pretty well. Very early this morning she started snacking since she had eaten very little at supper last night.  There was tapioca at 3:30am, applesauce at 5:30am and chips at 6:30am or 7am.  She ate her normal breakfast and lunch (with ice cream), and ate lots of the sausage, potatoes and onions I cooked for supper. It was her idea to get the ring of sausage the last time we went to the store.

While I did feel sort of tethered to Mary Ann’s side today (she doesn’t much like my hanging around and jumping up with her, always asking where she is going) there was a treat that helped keep me interested and engaged in the day.

We woke up to between five and six inches of snow.  Since the construction began, the birds have not been around.  The feeders had to be taken down so that they could work on the deck. The snow brought the birds back, by the dozen.

The waterfall was a draw.  There were birds of one sort or another in it most of the day.  There were still three feeders hanging from a stand in the back yard next to the waterfall.  There were some places that because of the overflow of water had hundreds of sprouting sunflower seeds.  A few birds managed to find there way through the snow to a spot in the back yard.

At the front of the house where some small feeders are located by and on the window, birds were busy.  The street in front of the house was filled with Robins drinking the melting snow.

We have a very good quality speaker in the house with a microphone outside, the wire coming through at the corner of a casement window.  When that microphone is on, the sounds of the birds are full volume inside the house.  The speaker is made for that purpose.  It was a present from our kids.

With probably a hundred or hundred and fifty birds spread among the trees in the back yard and the neighbors yards, the bird songs were constant all day long.  The birds came in shifts to the options, bird feeders and waterfall.  There were a lot of Starlings, certainly not a favorite.  There were Grackles and Robins and Mourning Doves, an occasional Bluejay, Brown Headed Cowbird.  In front there were sparrows, finches, a Cardinal and more Robins.

There was one bird represented in the back yard that brings back wonderful childhood memories.  Lots of folks are not fans of this bird because it can sometimes be found in huge flocks that can be a little overwhelming.  It is the Redwinged Blackbird.  Often, the color visible on the wing is actually yellow.  Redwinged Blackbirds are often found in swamps, sitting on or among cattails.

I spent some of my happiest times as a child, playing at the swamp a short block from the house.  I can still picture that crystal clear water with the cattails all around, filled with huge water bugs that had what looked like two large oars, one on each side of their bodies, tadpoles, and dragon flies everywhere.  Mom sometimes came down with the willow switch to bring me back home, fearing that I would fall in or hurt myself in some other way.  That did not deter me from my adventures there.  Once I made the mistake of describing the muskrat I saw down there.  Mom and Dad decided it was probably just a regular rat.

The cattails at the swamp were filled with singing Redwinged Blackbirds.  The moment I hear that sound, I am back at the swamp, feeling the wonder and joy and peace that I found there.  I only sctually saw and identified one Redwinged Blackbird in the yard today.  I heard more.  They were there all day long, singing often enough and loudly enough that I could hear them through the constant squeeking of the Starlings.

Late in the day, Mary Ann settled for a while, napped with her face on the little table in front of her.  She would not let me help her move.  During that time I was able to get the driveway and sidewalk shoveled.  Still later, I got the deck shoveled off and spread large quantities of oil type Sunflower seeds on the deck and next to the waterfall in hopes that there will be more visitors tomorrow, coming to eat.

Mary Ann’s three childhood friends arrive from Northern Illinois tomorrow evening.  Tonight as I was helping her into bed and giving her the night time pills, she heard them arriving.  I reminded her that it was tomorrow night that they were coming.  I hope she rests well tonight.

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.

 

March 20, 2010

Face Death — Find Life

Posted by PeterT under Daily Challenges, Hospice, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , |
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Now that Mary Ann is enrolled in a Hospice program, there is certainly a vivid awareness of death.  What exactly does that mean about what it is to be alive?  Is Mary Ann as alive as she was before she was enrolled in Hospice?  I will soon be 67 years old.  Statistically, I am closer to death than when I was 27.  Am I less alive now than I was then?

Marilyn, a Lead Staff member at the church I served as Senior Pastor for a dozen or so years has asked me to consider doing a presentation some time on funeral preparation and things that are associated with the process of dealing with a death in the days after it happens.

After forty years in the ministry, I have been through death with numbers of people.  In my job, I simply could not avoid thinking about and talking about death.  I remember when working on my doctorate, for a class on ministering to the older population (of which I am now a proud member), interviewing my Mother, who was in her seventies at the time (sounds young to me now).  I asked what she thought about death.  She said it is just a part of life.  It had been for her, having lost her first two children, one as an infant and the next as at the age of five.  People lay in state at home in the early years (she was born in 1907).

On occasion, when I had a cluster of funerals very close to one another (happened surprisingly often), I would wonder if I ought to find something to do that did not involve being immersed regularly in peoples’ lives at a time of such loss. I am convinced that the truth of the matter is unless and until we come to terms with death, with ours and others’ mortality, we can’t really live life to the full.

Fear of death seems to me to steal the joy from life.  Fear of dying is another thing entirely.  That fear is pretty rational.  None of us longs to have a long protracted process of dying.  Death is just the period at the end of the sentence that is the story of a person’s life.  Every day we are writing that story.  Accepting the reality of death frees us to give our full attention to the story we are writing each day, from the time we wake up to the time we go to sleep.

Making plans for the time when we die is just a normal task each of us needs to do, assuming we care at all about those who will be left behind. There is a peace and freedom that comes when all that is in order.  Today, Hospice Nurse Emily mentioned that her very healthy 87 year old Grandpa asked the Grandkids to go around his place and put their names on things for the time when he was gone.  At first the kids were reluctant, but he insisted.  For him it was comforting to know where his things would go.

The process of funeral preparation can be very life affirming.  While I do not recommend writing your own obituary with the expectation that it is the one that will be published, the exercise itself can be life changing.  Who do you want to have been when the period at the end of the sentence comes?  How do you want the story of your life to read?  Once you have gone through that exercise, it is time to actually do something to make that story a reality.

Mary Ann and I are no more or less alive than we were a month ago, a year ago, a decade ago, a half century ago.  Hospice or not, we are both alive.  There are limits on what we can do now as we continue to write the story of our lives, but there are limits of one sort or another on everyone.  The limits are not so confining as they are simply the setting for the story.  We write the story of our lives using the resources we have, not resources we used to have or wish we had, but the resources we have, thereby avoiding wasting time lamenting that we don’t have.

Mary Ann had a reasonably good day today.  It started with some fainting, but we got through that.  There was more conversation about dreams that seemed real to her.  Later in the morning Hospice Aide Sonya came to do Mary Ann’s shower, etc.  After a pretty full lunch, Nurse Emily came.  Again, it is good to have someone to report to and lean on when trying to determine how Mary Ann is doing medically.   I am happy to report that Mary Ann has gained back a couple of pounds, now at 114.5.

Former parishioners came by for a visit.  Randy and his Mom Leota came by for a while.  She is also suffering from some form of dementia, so her memory is not good.  Her husband was an avid fisherman, whose catch she would sometimes cook for us and call us to come and pick it up.  I did the funerals for one of their adult children, and her husband, as well as a couple of his fishing buddies.

Mary Ann ate a decent amount for supper and is now trying to settle down for the night.  The snow is falling at a rapid rate.  The first day of Spring tomorrow may include as  much as a foot of snow.

Since I seem unable to keep my eyes open, I think I will bring this to a close and head to be.  Here is hoping for a sleep-filled night.

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.

 

March 18, 2010

Let There Be Light!

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
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“…and there was light.”  This afternoon twelve feet of light flooded into our little townhome.  It seems as if not only have we added a six foot by nine foot area to our living space, but a deck, waterfall, and back yard filled with trees.  By contrast to the closed in feel of the interior living space in our little townhome, it now feels expansive and open. 

Sometimes it surprises me just how powerful the living, growing outdoors filled with birds and little beasts and thriving greenery can be for me.  I do not share the theology of Avatar, but I share the awe and wonder and respect for the healing influence of the creation. 

On this project, we are using the Design/Build approach.  I think that means something like flying by the seat of our pants as each question/option/decision comes up.  Gratefully, the contractor and carpenters have had very many years of experience doing this sort of project. 

“Would you like the ceiliing raised?  How about a ceiling fan?  If so, what size, color, style of lights?  Is the wall paper staying or going?  How many and where should the outlets go?  Do you want a railing on the short section by the stairs on the south side, a railing on the east side, a railing on the west side, anything on the north side?  How high should the posts be on the east side and what sort of blind will you get for it?  How wide should the steps be?  How wide and thick should the interior support post be?  Where should the switches for the ceiling fan, its light, and the outdoor spots go?  What should be used to transition from cork floor to carpet?  Do you want the sliding glass door to open in the middle or on the side, what side?  What about blinds for all that glass? Verticle? What style? Color? Fabric? Vinyl?

So far it looks even better than I had hoped.  Mary Ann has been skeptical about the project, but when the walls came down today, she seemed to like it very much. 

The noise has been deafening.  We had hung out in the kitchen at the little ice cream table most of the time.  When Mary Ann has been napping in the bedroom, she has seemed completely oblivious to the machine-gun rattle of the drills and pneumatic tools.  At some level, the sounds of construction are music to my ears as the project takes shape.

The last two days have gone pretty well for Mary Ann.  She attended he Tuesday morning group and was fairly alert there.  We ate out at Perkins so that she could have pancakes.  She let me feed them to her.  She consumed about 80% of three buttermilk pancakes and all of two pieces of bacon.  She had eaten a good breakfast and had a couple of cookies at her Bible study.   She ate a small but adequate supper, with a couple of scoops of ice cream to finish it off. 

The Hospice Nurse came by for a while to check in and ask her routine questions about how MA is doing.  She is, of course, interested especially in any changes.  Mary Ann’s blood pressure was high again, 208/100.  It is reassuring just to have someone who listens and writes down what is going on.  It takes a little of the pressure off that sense that I have to be on top of everything and catch problems on my own.  It has seemed a little overwhelming sometimes to feel as if I need to be able to figure out what is going on with Mary Ann and when what is going on warrants an intervention of some sort. 

Stacey came by to show us some more options for verticle blinds to provide privacy with all that glass opening into our living space.  She also brought some more paint samples since Mary Ann had mentioned some ideas for colors to use in repainting the main upstairs interior walls.  I was pretty excited that we came up with what we want to use, and Mary Ann had significant input. 

Last evening Volunteer Patrice spent time with Mary Ann, while I served as an interview Guinea Pig for a Doctoral Student, Gretchen, Daughter of Don and Edie, whom I have mentioned in earlier posts.  That interview was done at PT’s, so I got some time away from the house, and Mary Ann got a break from me.  It is always good to have something different and disengage from the role at home for a while. 

Last night she slept well.  I was grateful, since the time change conbined with late nights writing posts caught up with me, and I headed to bed without writing last night. 

Today has gone very well.  Mary Ann sat in view of the monitor this morning without getting up, so that I could remain with the Spiritual Formation Group downstairs most of the time.

Bath Aide Zandra has struggled with fainting issues interfering with a safe shower experience.  Last Monday, Mary Ann had not yet taken her meds by the time Zandra arrived.  She had no problems with her and enjoyed that she was able to converse with Mary Ann.  For the last couple of weeks, Mary Ann has been very tired and unresponsive as well as fainting often while showering and dressing. 

This morning, I purposely waited and did not give her the morning meds before Zandra came.  Again, she did very well.  Mary Ann did not faint and was conversant with Zandra.  I have been convinced that most often the fainting has come when the morning meds started kicking in.  Many of the meds have the side effect of lowering blood pressure.  This week’s experience seems to confirm that the meds are a triggering element.  I am going to try to remember to hold off on meds until after her shower on those days.  She still has Orthostatic Hypotension, but maybe we can at least minimize the risk of it acting up during her shower. 

Friend and Volunteer Coordinator Mary came by this afternoon to spend time with Mary Ann while I ran some errands related to the remodel project.  She broght some flowers, always very much appreciated by both Mary Ann and me.  Flowers brighten our sometimes stale environment. 

Mary Ann ate a fairly light supper, and then a bit ago she got up from bed to eat a half sandwich.  I hope a full stomach will help her sleep well.  There are, of coruse no guarantees about that.  We have some company from Kansas City tomorrow, a visit we are both very much looking forward to.  We have been friends with the crew that is coming for more than 35 years.

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.

 

March 14, 2010

When to Worry

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , |
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“The Doctor who treats himself has a fool for a patient.” Not only do some who read my posts show love and concern and words of compassion and support, some of you are also worried about how I am doing.  You may very well suspect that I am trying to treat myself spiritually and mentally, against which the above aphorism warns.

You may not change your mind after I have described what leads me to feel secure and healthy in the midst of dealing with so much over which I have no control.  I hope you catch sight of some of what keeps me grounded spiritually and mentally.  I will also share with you some things to watch for that might be symptomatic of losing my bearings.  What I will share is not just about me but anyone who is in a role like mine, or struggling in any way with things over which they have no control.

Last nights post was a window into the specifics of one of our challenges.  I have chosen to write in great detail what we are going through and my feelings about it.  I do so for a number of reasons.  One is that I think it is more interesting, and brings to life what we are experiencing in a way that is accessible to someone who doesn’t have direct experience with whatever it is.

I write in such detail the struggles we are going through and my feelings about them so that readers who are in this kind of role will be reassured that they are not alone in their frustrations.  Somehow it is a little easier to endure seemingly impossible situations when it is clear that there are others doing so.

I write in such detail, including feelings of helplessness as options seem to narrow and the boundary of the ability to cope comes into view. so that those who happen not have been there can catch sight of that place.  That goal is to encourage all of us to look each other with a level of compassion, realizing that the people we know, many of them, may be in the throes of some sort of personal battle, suffering in silence.

I am not silent.  One of the purposes of sharing all the gory details of our journey is that it helps me not to be silent.  I have been using all of you who read these purposes as a collective therapist.  You listen.  No one can go through another’s pain and experience it for them.  Each of us has to survive our own pain.  Many of us like doing so in a community.  You are my community.  The Volunteers are my community.  Friends and family are my community.  I am also part of your community.  One of the greatest joys in the ministry has been listening to and talking with others, maybe some of you, when you have been dealing with things over which you had no control.  I can only hope that the time we spent together helped.

When I write, I seek to be straight with you.  I have chosen, wisely or unwisely, to forgo any pretense that because I am a Pastor I am always pure and holy and strong and capable and wise and completely in control mentally and spiritually.  The tradition of which I am a part is about the Grace of God.  That means I believe that I am loved and forgiven just the way I come, ugliness and all.  I am not saddled with the hopeless task of becoming so wonderful and loving that I measure up to God’s expectations.  I need to be able to fail God and know that God will not fail me — even though it would be only fair for God to do so.  I don’t want a God that treats me with fairness.  I want a God who treats me with mercy.

Here is my assessment of how I am doing.  I think I am doing well.  I feel whole and full of life.  I hide very little from you as I write.  By doing so, it helps me see the reality of what we are going through here. It feels healthy to me to be able now to cry, to grieve, to express frustration, as well as describe the natural beauty that nurtures my spirit. I am free to feel the pain deeply because while it is very real, it does not have within it the power to destroy me.

Here is where the faith tradition of which I am a part frames my world view in specific terms.  I affirm that the One whose actions consummated the deal that has resulted in the Grace of God sustaining me and any who happen to recognize a need for it, has shown me how to live.  He loved people deeply, he knew how to party, he had compassion, he cried, he got angry, he got frustrated with others, he went off by himself to pray, he went to church, he felt pain, he felt overwhelmed, he cried out in desperation from the means of his execution, he faced death without pretense, went into it, through it all, and came out on the other side with life past any power to destroy it.

I feel utterly and completely secure in the love that surrounds me from the One who creates life in me every day, who has put his life on the line for me, whose Spirit nurtures my spirit.

In human terms, I have children and their spouses who listen to and support Mary Ann and me.  They will do anything in their power to be there for us.  I have Brothers and Sisters who care about us.  Every Wednesday morning four of us spend a couple of hours with Scripture and the reflections of others who have gone before us in the faith.  We talk about God’s participation in our lives moment by moment, day by day.  While not often enough, the interactions with friend John from Oklahoma have been exceedingly nurturing Spiritually.  At the moment he is leading a group on a mission trip to Guatemala.  Please keep him and his group in your prayers.  The times I spend in reading and meditation and solitude (deck time, listening to music, appreciating the beauty of nature) are pivotal in maintaining Spiritual and mental equilibrium.  The retreats to St. Francis of the Woods in Oklahoma are powerfully healing.

The online community of those caring for spouses with a form of Lewy Body Dementia has provided a place where complete understanding can be found.  There are many things that I would not say here in these posts that can be said openly in that group with utter and unconditional acceptance.  That group demystifies things that could have more power than they deserve. Reading those posts daily helps put our struggles in perspective.

Words are an important way for me to process what we are experiencing.  Using them in writing and in interaction with anyone unfortunate enough to ask how we are doing, provides a wonderful release.

Here is when to worry: when I stop writing and talking.  It will be time to worry when I no longer shower and wash my hair in the morning, get Mary Ann dressed and fed, make the beds and clean the commode, clean the kitchen counters, drink PT’s coffee and eat Baskin & Robbins ice cream (actually I should stop that last one, it would be healthier), feed the birds.  If I start telling everyone how perfectly I am doing, never sad or frustrated or out of control or grumpy or angry, always sweet and nice and wonderful, then it will be time to call 911 and have me institutionalized.

All of that being said, “The Doctor who treats himself has a fool for a patient.” I appreciate people asking the hard questions of me since I could be deluding myself into thinking I am doing better than I am.  When the Hospice Social Worker came, she asked very many pointed questions of both Mary Ann and me.  I felt I was being absolutely honest with her when I answered each question.  I recognize that there are still more difficult times coming.  I feel healthy spiritually and mentally now, and I expect to deal with what comes as it comes in ways that express fully what I am going through. I am on the pay as you go plan.  When I hurt, I will hurt and when I am wounded, I will feel the pain.  With that Grace of God as the power, healing will come.

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.

 

March 12, 2010

And the Walls Came Tumbling Down

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , |
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Not yet, but there are seven guys with trumpets of rams’ horns followed by a large crowd who have been circling the house for some days now.  Should I be concerned??

The addition of a sun room that will change exterior space into interior space adding a six foot by nine foot sun area with twelve feet of floor to ceiling glass (six feet of which is sliding doors) is now in the process of construction.  The new exterior walls are almost done.  The old interior walls will be removed some time in the next few days, probably Monday.

We now spend most of every day and night in this little townhome, 1150 square feet upstairs — easy to care for but somewhat confining.  The large pondless waterfall that we put in last summer is wonderful, but not visible from inside the house.  When this project is complete, the waterfall will be in full view.

Mary Ann’s assessment of the project is that I have really gone overboard.  I think when all is said and done, she will like it very much.  She has never enjoyed going out and spending time on the deck.  This way she can see the beauty of the area behind the house from the warmth or the cool of the house.

I will make no pretense.  This is for me.  I am nurtured by the outdoors.  I crave light.  This will provide access to both while still in the same space as Mary Ann, keeping her in full view.  When the project took shape and the deal was consummated, it was not so clear that Mary Ann was declining to the degree that is now apparent. It seems to me that the timing is actually working out well.  This is a helpful distraction from the focus we have had on preparing for the next phase of our lives.  The project feels very life affirming to me.   Yes, we are spending the Kids inheritance!  They know it and have encouraged us to do so.

The last couple of days have included two nights of adequate sleep, interrupted, but not too often.  Yesterday she ate well for two meals and missed the third, sleeping through it.  Bath Aide Zandra did do a shower since Mary Ann’s leg strength seems to be returning.  She had problems with her, but got the job done.

Today has included lots of fainting, even just sitting in the chair.  I hope that will subside for a time.  A huge rolling shower chair has now been delivered.  Hopefully, that will make a difference.  The Hospice Aide will come tomorrow for the first time.  This way Mary Ann will get three showers a week.  Since she is incontinent much of the time, it is good to keep her clean.  We change disposables very often (cost adds up fast, but worth it) to avoid urinary tract infections [UTI].

The hallucinations were in a challenging mode.  Mary Ann was popping up to go somewhere and do something much of the time she was out of bed.  I, of course, needed to get to her immediately to keep her from falling.  When I got there, she usually didn’t know what she was up for or where she was going.  A few times she had a need that was created by a hallucination. A few times when she was lying down but awake, she was having a waking dream and talking to me about things that had no connection with reality.  I am sure the hallucination/delusion/dream times are distressing to her, and they certainly are very difficult for me to deal with.

The Hospice Chaplain stopped by to introduce himself.  It is a frightening thing to put two preachers together.  Poor Mary Ann couldn’t have gotten a word in edgewise even if she tried.  He would come at whatever intervals we chose.  Since we have a good support system, I suggested once a month.  His time will be best used with those many who do not have an active support system.  It is nice to have an option that is not part of in our organization or denomination.  He spent a good portion of his career in Brazil.  I suspect he has plenty of interesting stories.

Later in the day friend (and former parishioner) Don came by to check out the project.  He had a couple of good suggestions.  More importantly, he brought a cup of coffee from PT’s.  We stood there talking long enough that the workers thought they might put us to work.

For supper we enjoyed a small Lasagna that Daughter Lisa had made and put in the freezer for us when she was here.  Afterward Mary Ann was willing (of course) to head to Baskin & Robbins to get some ice cream treats to bring home.

She is now in bed.  I suspect, given the hallucinations today, tonight may be a difficult one.  We will see how it goes.

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.

 

March 10, 2010

Good Day with Good People

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , |
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It was a very good day today, given recent challenges. The summary is: She went to her Tuesday morning group; the Hospice Nurse visited her; Mary brought Baskin & Robbins (yeah!); and the Hospice Social Worker came and spent some time with us.

Mary Ann decided that she should get to her Bible Study Group this morning, even though it appeared that she was too tired and would not be able to get up in time.  As I fed her breakfast she said something very revealing about her perception of Hospice.  I was not sure how much of what we talked about through the family meeting and meeting with Hospice folks.  She asked what she would be doing the rest of the day after her group study and if she would be spending the night here at the house or not.  It dawned on me that she had somehow gotten in her mind that enrolling in Hospice meant she would spend her time at a Hospice place.  We do have a Hospice House here.  Our Parkinson’s Support Group meets at a local Hospice office.

I reminded her that one of the main benefits of Hospice was that we could stay home to the very end.  I told her that the Hospice folks would come to us here at home.  It was an interesting conversation.  She seemed to understand.  It did reveal just how significant the decision about Hospice was for her.  When she said yes to Hospice, she must have been saying yes to going someplace other than home from now on.  That is a thought I still could not tolerate.  As strong-willed as she has always been, it has surprised me how readily she has generally accepted what the Kids and I have thought best for her.  We always made clear that we would honor whatever her wishes were to the extent possible.

At Bible Study, apparently she participated appropriately at the beginning, then soon put her head down for the rest of the time other than pill time.  It is such a wonderful thing that the group is so accommodating to Mary Ann even when she cannot fully participate.

She wanted to eat at the New City Cafe, but thought better of it when we got to the parking lot.  She was still struggling in the car just to keep her head up.  I went in and got her favorite meal there, the Seafood Tortellini Salad to take with us.  When we got home she ate lots of it, along some bread they sent with it and her usual Pepsi.

Early in the afternoon, Hospice Nurse Emily came by.  She is young and enthusiastic.  She did a great job with Mary Ann, who was in bed napping by that time.  She took her vitals and checked her out.  Again, her blood pressure was pretty high. The equipment company had delivered the wrong style shower chair.  When Nurse Emily got back to the office, she followed up with the supplier and, hopefully, a more appropriate chair will be delivered tomorrow.  Bath Aide Zandra’s Supervisor called and said that tomorrow’s usual shower and hair washing would be a bed bath instead.  I am hoping the shower chair will allow showers to resume.

Another reason that I am hoping the showers can resume is that Mary Ann seems to be regaining the ability to help in transfers from bed to transfer chair to shower chair to the chair at the dining room table.  The curled hands seem to be loosening some.  It may still be wishful thinking, but it seems that her hands are also less swollen.  The medication, Amantadine, that was stopped certainly has a powerful impact.

The Hospice Nurse will come twice a week, Tuesdays and Fridays.  We can cut that back to once a week if that often does not seem necessary.  Soon after Nurse Emily left, Mary came by for a visit, bringing the Baskin & Robbins ice cream treats.  Mary schedules the Volunteers who visit Mary Ann.  As I have mentioned on occasion, we use the free website http://www.lotsahelpinghands.com to schedule times and days of visits.  It is a wonderful tool.

Just as Mary was leaving, Hospice Social Worker Kristin came by.  She spent quite a while since it was the first visit.  I was pleased at how responsive Mary Ann was with her even when the questions were not easy one word answer questions.  Mary Ann answered many questions about how she feels in different areas.  There were questions about how anxious she was, or scared or depressed or hopeful.  Mary Ann seemed to answer as I expected, with a lower level of concern than most would have in Mary Ann’s situation.  I understood one of her responses well enough to bring up the dreams about our divorcing and the kids divorcing (all not true, of course).  She admitted that those dreams were upsetting to her.

Social Worker Kristin also asked how I was doing in all the same areas.  As I responded, it seemed to me that while I am experiencing fully all the dynamics of our situation, it is happening in a fairly healthy way.  When she asked if I was grieving, I answered by saying I am using the pay-as-you-go plan.  I am trying to surface the feelings and face them as they come, rather than hiding them from myself and others.  She asked about guilt feelings.  I told her that I choose to admit pretty boldly the mistakes of which I am aware.  It was an opportunity to reveal a bit of my understanding of the unconditional love of God.

After that conversation, I felt as if both Mary Ann and I are as okay as we can be given our circumstances.  If we were more okay with them I would really worry about our mental health.  If we didn’t get down and a little depressed once in a while, we would have to be crazy!

I am certainly pleased with the care Hospice is providing.  I am also pleased with so many good people’s willingness to show their concern and do whatever they can to help.  It is as if there are two worlds out there, the one reported on in magazines and newspapers, on the radio and on television and computer screens — and the world made up of the flesh and blood folks with whom we live in community.

Mary Ann did get to sleep last night and slept well.  Me, too.  She ate well at all three meals (I fed her) and she is now in bed.  As always, I will not presume to predict how the night will go.

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.

 

March 7, 2010

Decision is Made

Posted by PeterT under Daily Challenges, Family, Help from Others, Information on Parkinson's, Meaningful Caregiving, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , |
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I am phoning the Hospice folks tomorrow (Sunday) to begin the application process for Hospice.  When we asked in a way that she could respond yes or no, Mary Ann said yes.  The kids both agree wholeheartedly.  I have grieved my way through to agreeing.

It seems none too soon.  I can’t believe how much Mary Ann appears to have declined in just the last three or four days.  She slept through the entire time I was gone, either in bed or in her chair with her head down.  She had been sleeping like that before I left.  She is seldom responsive, but can on occasion be lucid for a while. All of a sudden in the last three days, her hands have swollen and are stuck in a clench, which could become hand contractures, something our daughter saw often in the nursing home context.

Mary Ann was at the table with us during the entire conversation about Hospice, and the decision about the possibility of a Do Not Resuscitate order.  She had her head down but her eyes open.  The kids were sitting closest to her and I was across from her.  We worked hard to get responses from her at various times.  I explained that acceptance by Hospice would imply that we are on about a six month trajectory.  I added that if she was doing better she could “graduate” from Hospice for a time.  She responded in a way that seemed to indicate she was tracking with what I was saying.  She said a distinct yes, for all three of us to hear.

What is most comforting to me and, I am sure, to Mary Ann is that should she qualify for Hospice Care, she will be able to stay at home to the very end.  We both dread hospital stays so much; that alone was enough to seal the deal.  Of course, there still could be need for hospital care, but since Hospice can administer IV’s at home, it is far less likely there will be any need to do so.

I talked about the DNR option.  After explaining it and the reasoning for it, I asked her first thoughts on it.  Again she said, yes.  I told her that I would check back with her another time to be sure.

Since, a decade or two ago, Mary Ann already had tearfully wished she had gotten something she could die from rather than the long protracted decline of a disease like Parkinson’s, the DNR did not bring resistance but agreement.

Speaking of tears!  I have encouraged people, men and women alike, to celebrate the ability to cry as a powerful gift from God.  I have told people that it is a sign of strength and not of weakness.  At the same time I was proud of myself that in my adult life I could count on one hand the times I had cried out loud, sort of denying my own counsel.  Well, I am now, a few weeks short of my 67th birthday, giving up counting.

Last night in the cabin at the retreat center in Oklahoma, I could no longer hold it in.  I have ministered to people for forty years.  I have watched die and done funerals for people that I genuinely cared about.  I refused to become clinical and treat funerals and the people grieving at them as just a part of a job.  I risked becoming vulnerable enough to care about them.  I buried babies, and teenagers and young adults, parent of young children, people of all ages and circumstance.  I felt the pain and cared about how they were feeling.  I ministered to people and preached at the funerals and never broke down (except once in an inconspicuous moment after preaching at the funeral of one of my best friends).  I cannot describe to you just how different it is to think about watching Mary Ann go through what I have seen far too many times in these forty years.

I want this process to stop right now.  I am not willing to lose her — but I can’t do a damn thing about it!  There is no where to which to run to get away from it.  I have a very ugly and very loud cry.  I guess not having practiced it more, I never really learned how to do it well.  I warned the kids tonight and asked them to explain to their children that they might see their Grandpa crying out loud, but not to be afraid.  I wanted them to know that it is all right, even healthy to cry, to let their emotions show.

I spent the evening the night before last talking with friend John.  I just spewed it all out, the good, the bad and the ugly.  I can trust John with the worst of it.  He can listen without judgment and never give advice.  He had gone through a shorter version of this when his wife died of Cancer — shorter, but no less devastating.  He had some very tough challenges as a single parent immediately after Sherrie’s death.  I shared a struggle with anger toward someone in Mary Ann’s closest circle who hurt her deeply.  That evening, that person and that deed’s power to turn me into someone I don’t like was lifted from my shoulders, better said, my gut.

So much is happening so fast.  This is all I will write for now.  More will follow.

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.

 

March 4, 2010

Hospice Report — Lisa’s Here — Construction Begins

Posted by PeterT under Daily Challenges, Family, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , |
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We met with two folks from a local Hospice program for about an hour and a half this afternoon.  The construction has begun on the sunroom.  Lisa has arrived.  Three of the anticipated events have been (are being) realized. 

Lisa came in late in the evening.  Mary Ann was in bed but awake enough to get to see her and talk for a moment.  It will be interesting to see which Mary Ann will be present with Lisa during these three days, sleeping Mary Ann, hallucinating Mary Ann or lucid Mary Ann.  It could be all three who appear.  This form of dementia is so odd and unpredictable in how it presents itself. 

The folks from Hospice were, of course, very pleasant and engaging.  The one who took the lead was Nurse Lisa (same first name as our Daughter – lest you be confused).  She had managed to get information from the doctors, at least the Cardiologist.   She had read it over carefully and was fully aware of Mary Ann’s situation, at least to the extent of what was covered by the information she had received. 

They asked lots of questions, and listened carefully to the account of Mary Ann’s current situation and recent history.  There is a doctor in Kansas City who is charged with determining if Mary Ann’s problems rise to the level required for enrollment in Hospice.  The three general problems that will be evaluated are her heart issues, her late stage Parkinson’s and her dementia.  It is one of those three that must be at a certain level.   

One understandable but mildly disappointing observation made by Nurse Lisa was that Mary Ann’s dementia was certainly not bad enough to qualify her.  Understand, I would be happy to hear that she isn’t yet far enough along to require Hospice care.  Nurse Lisa made that comment after Mary Ann got up from a nap and I brought her to the table with us.  Mary Ann was alert enough to present herself well. 

Parkinson’s Disease Dementia [PDD]  is a Dementia with Lewy Bodies [LBD].  It is different from Senile Dementia or Alzheimer’s Dementia.   PDD/LBD does not move in a steady decline but erratically jumps between severe dementia, especially hallucinations, to lucidity, or sleep.  All of the LBD Spouses in the online group I am in know about “showtime.”  People with this disease can present themselves in a way that looks and sounds as if they are functioning very well.  Later this evening Mary Ann was hallucinating almost constantly, just as she had early in the day.

One of the challenges with this disease is finding people who understand it, or educating them so that they do.  We will find out by Friday what the doctor says about the assessment of her problems and their implications for enrolling in Hospice.  Since I will be out of town on retreat, they will call our Daughter Lisa.  By the way, our Daughter Lisa worked in a Hospice program in South Carolina for a few years.  She said that there and in the Hospice programs she has checked on the Internet, a problem called “Failure to Thrive” has often been used.  That is used when there are multiple problems, including weight loss.  Mary Ann’s height/weight ratio fits well within the range of those who qualify for other hospice programs. 

Nurse Lisa and the other Hospice rep named Chris mentioned that 20% of those who enroll in Hospice, eventually graduate.  That means they get better and no longer fit the criteria for enrollment.   If Mary Ann is enrolled, we will set graduation as a goal.  While the resources and support provided by Hospice appear to be wonderful, we have a pretty effective system already and would like to extend our quality time together.  Bythe way, a recent study is suggesting that those enrolled in Hospice generally live longer than those who are not enrolled in hospice.  The LBD Caregiving Spouses online group posted that information this morning, well before this afternoon’s meeting with Hospice. 

This morning we experienced the classic frustration of conflicting medical problems and treatments.  When Bath Aide Zandra was doing the morning shower, hair washing, dressing routine, Mary Ann fainted two or three times — once she bumped her head since Zandra had her hands full with soap and hand held shower sprayer and could not catch her in time.   I suggested to Zandra that maybe I could give her the Midodrine that helps raise her blood pressure before Zandra comes to see if it will help.  Then when Parish Nurse Margaret was here later in the morning to spend a couple of hours with Mary Ann so that I could have a break, her blood pressure measured 204/100.   There seems to be no way to keep her from experiencing a low blood pressure syncope (fainting) without raising her blood pressure dangerously high.  Imagine how high it would have been if I had given her a Midodrine this morning before Zandra came.

The jury is still out on whether eliminating the Amantidine is more good than bad (see last night’s post). 

After the meeting with Hospice, we managed to get to a Lenten Worship Service at church and the meal following.  At the meal, she was willing to let me feed her.  She ate a good quantity of food.  She usually resists letting me feed her in public.  It may be that there are so many church folks there who have been very accepting and very helpful to us, that Mary Ann simply feels secure enough not to be so concerned about what they think of her as she is being fed. 

The very noisy construction crew have been doing demolition and then preparation for putting in the subfloor of the new sun room.  It will be hard to put that project out of my mind so that I can relax for the three days I will be on retreat.    The time is set for John to come to the center and spend time talking tomorrow evening (see last night’s post)

It seems like such an important transitional time for us.  It will not be clear how important it is or is not until weeks or months later as this journey unfolds.  The Spiritual Formation Group’s conversation this morning centered on the matter of  looking for past times that ended up serving as teaching moments for God to shape who we are becoming. 

I guess it is still energizing and exciting to realize that even as Geezers we are growing and  becoming more than we have been and less than we will be.  It is sort of like Adolescence without the pimples!  (Constipation instead.)

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.

 

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