It just happened so suddenly. Volunteer Deb arrived for the evening.  As I was getting prepped for heading out, Mary Ann got up and walked into the kitchen.  Deb was with her, as was I when she fainted.  We got her in a chair, then into her transfer chair.  She immediately popped up again, without the brakes yet set.  We got her to her spot by the little table at which she sits in front of the television.  She stood up again.

This time she responded that she wanted to go to the bathroom.  Deb took her while I was still there.  When Mary Ann came back to the Living Room, Deb said she had been looking for her diamond.  I pointed out that it was on her finger.  She popped up again needing to do something she tried to describe but it just didn’t compute.  Then moments later she popped up again and just stood there needing to do something but not sure what.  She fainted again. Deb, of course, was right there with her hand on the gait belt (Deb is a Nurse).

She popped up again. I asked Mary Ann if I could bring her something when I was out.  That is our code for getting her ice cream.  She said, “garbage bags.”  I asked her what she meant, what garbage bags.  She got angry with me for not knowing what she was talking about.  I asked her if she would sit down for Deb since she had been fainting.  She reacted angrily and sat down.  There was nothing in the air, any former conversation, anything in the immediate or recent circumstances having anything to do with garbage or garbage bags.  She responded as if I was just being difficult on purpose about the obvious matter of garbage bags.

Recently, the hallucination/delusion/dream  mixed with reality has been a constant undercurrent, surfacing at various times.  There have been days when she has had streaming confusion.  While the confusion can come and go in moments, tonight’s move from the mild dementia in the background to blatant and intense problems happened in a more dramatic way than I remember happening before.  Rarely has anyone else seen the dementia on the surface with this level of intensity.

After I left, Deb said there were a number of trips to the bathroom, with some action in the last one.  Then she settled in front of the television.  I asked Mary Ann as I was putting her to bed what she was referring to when she got angry with me about the garbage bags.  She wasn’t sure but she thought it had something to do with our Granddaughter, Chloe.  A couple of years ago we bought garbage bags from Chloe as part of an annual school fund raiser.  To my knowledge there has been no conversation in our household about those garbage bags since then.  At the moment, as I am writing, Mary Ann seems settled in bed.

Last night did not go well at all, so I expected today to have some problems with the dementia. She ate reasonably well.  Bath Aide Zandra came to give her a shower.  Mary Ann was in and out a bit.  She asked me to let the dog in.  There is no dog.  She talked about the tapeworm she is convinced that she has.  She said she sees it in the bed at night.  While she was in and out, it was not overly intense.

She was tired, understandably after last night.  There was a lot of time with her head on the little table in front of her.  She opted for Chinese from the grocery for lunch. Hospice Chaplain Ed came over after lunch for a while.  He asked Mary Ann how she was doing, asked me how I was doing, but most of the time it was the usual conversation that included our various ministry experiences.  He was interested in the Concert we had at church since he is a musician, plays the piano.  Mary Ann had her head down and dozed through most of what was an exceedingly boring conversation to her.

She then napped in the bed for about an hour and a half.  I got in some deck time while she was sleeping.  Tonight while Deb stayed with Mary Ann, I did a little shopping at Penney’s to replace some holey underclothes (it’s a pastor thing) and get a long-sleeved white shirt.  Yesterday’s Concert revealed that I had none that fit me.  Who needs a white shirt when retired?  Levi’s and work shirts (euphemism for hang around the house doing nothing shirts) are all that are needed.  Then I went over to my spot with the best view in town and sat for an hour or so.  I read from Weavings, the Spirituality Journal that comes to the house quarterly.  I watched about as beautiful a sunset as a person could hope to see.  In that spot I can hear birds and frogs and wind in the trees against the backdrop of tires on the Interstate a half mile away.

The deck time and sunset time was helpful.  Lately it has just been a little tougher for both of us to deal with the vagaries of each day’s leg in our journey — nothing dramatic, no one thing in particular.  Having said that, a prayer popped into my mind.  In our tradition there are formal corporate prayers (sometimes called Collects) that are often used in worship.  Many of them have a long and rich history.  There is one used in a worship service called Evening Prayer (also in other services) that is a favorite of mine. Here it is, copied from The Lutheran Book of Worship, p.153:

“Lord God, you have called your servants to ventures of which we cannot see the ending by paths as yet untrodden, through perils unknown, Give us faith to go out with good courage, not knowing where we go, but only that your hand is leading us and your love supporting us through Jesus Christ our Lord.  Amen.”

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Sitting in the transfer chair in front of the television, she just fainted.  I took her blood pressure as soon as I could get the cuff on her arm, the stethoscope in my ears and the cuff inflated.  It measured 80/50.  About five minutes later I took it again.  Then it measured 90/60.  Remember the three weeks it measured 220/120 when I took it first thing in the morning?  Check a few posts back.

I started her on a half of a Midodrine pill three times a day.  I got in two doses today.  And so the roller coaster goes up and it goes down.  Today is the best day in the last four (if I am counting correctly) in terms of Mary Ann being awake and lucid.

She got up in time to eat and take pills before Bath Aide Zandra came this morning. While I needed to help her with all that she ate, she had a good quantity of food. She did faint more than once for Zandra as she was trying to give her a shower.

She sat up in the chair for the rest of the morning.  It was the longest she has sat up in the chair in many days.  There has been no evidence of hallucinations today.  She ate reasonably well at lunch, having a big bowl of ice cream for dessert.

After lunch she sat for a while and began slumping over some.  Soon she got up to go in and take a nap.  She slept until supper.  She ate reasonably well (I actually cooked) and had a lemon bar for dessert.

Since Volunteer Twila came for the evening, I was able to get out for a while and bring back for her a couple of scoops of Baskin & Robbins.  She ate that treat right away.  It was not long after that that Twila left and she went to bed.  She has been down for a couple of hours, either watching television or sleeping.

I have finished the fax to the KU Med Center Parkinson’s Clinic Neurologist and intend to send it tomorrow.  As I finished it, I could describe what has become a pattern for the last three weeks: two days and two or three nights with streaming hallucinations any time she is awake;  then two days and two or three nights of sleeping all the time (day and night); then a couple of days and nights in which she sleeps at night and is awake and lucid about half of each of the days.  Then the cycle begins again.  This is the closest we have come to a pattern in a long time.  It is not a wonderful and pleasing pattern, but at least it provides something coherent to communicate to the doctor other than constantly unpredictable changes.

Last night instead of getting to bed early as I had planned, I checked out some of the Taizé music on YouTube.  I followed it with some Russian Orhodox Liturgical Chant, also on YouTube.  That hour or so was very nurturing spiritually.  Since the snow and Mary Ann’s sleeping through the entire day precluded getting to corporate worship, I needed the sabbath rest more than the physical rest.  Tonight for part of the time I found a spot with enough light at PT’s coffee shop and read the book on science and religion called The Mind of God by Paul Davies.  I mentioned it in a prior post on this blog.  The author does not believe in God as do I, but his approach certainly makes it clear that he does not rule out that possibility.  He seems to be arguing for belief, based on the science, even though he does not claim belief.  My faith is nurtured rather than challenged by what I read.

As I have repeated far too many times, this is a particularly difficult time in our journey.  The Spiritual nurture is a key element in sustaining me during this time.  I am grateful for Mary Ann’s strong faith as we journey together.

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It is about 11:30am and Mary Ann is still sleeping.  She got up last evening long enough to eat some ice cream and apple crisp.  Then she took her pills, went back to bed and slept the entire night.  This morning, there was a commode trip at about 7am, then at about 8:30am she got up long enough to have juice (with Miralax) and yogurt.  Then she decided she wanted to go back to bed.

The good news about this is that when she has been up, she has been able to interact verbally and has not been picking up threads that are not there, nor has she acted as if she was hallucinating.  Her head is no longer hanging down on her chest.  Needless to say, those are encouraging signs. She is still unable able to eat without assistance.  I fed her last night and this morning, even putting her pills in her mouth.  She did manage to lift the cup and drink most of the juice by herself.

Yesterday, I chose not to awaken her for medications.  Most of her meds are intended to help her when she is up and about.  Most of them have a short half life.  They help when they are in her system, but are not necessarily maintaining a constant level of medicine 24/7.  Missing one dose of the meds seemed to me to be acceptable. I concluded that the rest was more important.  She did take her night time meds, so there has been no interruption in them.  She took the morning pills today, and while she was lying in bed, I changed the Exelon patch she had worn for two days.  That is a med that needs not to be stopped for long.  It is pretty powerful and when initiating the patch, it takes a month on a lower dose to keep from creating the unpleasant side effect of pretty bad nausea — been there, done that.  I am also going to wake her up for the meds that come every two hours during the day.  My goal is to return to and maintain a normal schedule in hopes that will help us return to the pre-hospital norm.

The other parallel recuperation activity needed includes intestinal activity.  There has been some activity, this morning during the 7am trip to the commode.  Then before going to back to bed after breakfast (the yogurt, juice and pills) there was a little more substantial activity.  At the risk of being indelicate (there is nothing delicate about being a Caregiver), it is still at the stage where manual help is needed.  With that lovely image in mind, you can appreciate my excitement when things come out on their own and Dr. Oz’s S appears.  We are not yet back to that wonderful normal.  At this point I am hopeful that in a couple of days we will be there.

Of course I cannot know where this will go, but my intention is to methodically do all the things we have normally done in the past as they are possible.  My hope is that by Tuesday, a week from leaving the hospital, normal will have returned.  Whatever is so by then will probably need to be established as our new norm.

My need to establish a norm of some sort, any sort, comes from the way I am wired.  When I get a set of expectations in mind, it is tough for me to incorporate changes very quickly.  Since retirement, the rewiring is in progress.  By removing almost all commitments, there is space and time to adapt to whatever changes come without the added stress of failing to meet those commitments.  When we went to the hospital, there were a few appointments (dentist, doctor, among them) to be changed, but nothing for which I had to find substitutes or burden others to do for me.

Even though things can change dramatically at any moment (as in Saturday’s entrance into the hospital), the norm is where my pivot foot rests when I turn to meet the unplanned, unexpected.  Unlike Michael Jordan in his best days, I cannot hang in the air for very long without a place to stand.

In a moment of devotional time last evening, I read this prayer.  I receive a weekly email from the National Catholic Reporter web site with a devotion by Fr. Ed Hayes.  (Yes, they allow Lutheran Pastors on their site.)  I have appreciated his writings for decades, and I had the privilege of doing a marriage ceremony with him many years ago.

I need prayers for flexibility!

A Psalm of Flexibility

By Ed Hays
Created Nov 06, 2009

O spirit of God’s eternal springtime heart,
grant me the virtue of elasticity.

Make my heart as boundless as my Beloved’s heart,
which at this moment is creating
new galaxies and infant suns.

Make me pliable and playful with your Spirit
as you teach me the alchemist’s recipe
of how to keep my heart’s skin
like baby’s skin, ever-expansive,
able to hold the wildest of wines.

Stir my mind well with your sacred spoon
to awaken the fermentation of ideas
stilled by the ten thousand little compromises
required of me by the stiffness
of the old leathered skins of society and religion.

Gift me with elastic frontiers of heart and mind,
so I can see before my eyes,
both in the heavens and on earth,
how old and ever-new are those partners
passionately dancing together
in the perpetual birthing of your universe.

From Prayers for a Planetary Pilgrim by Ed Hays

The Spiritual support I receive through Ed’s writings, through the Taize Music from their site, from Weavings, a spirituality journal, through Scripture, corporate worship and the Spiritual Formation Group that meets at our house weekly, helps provide the source strength that has allowed survival so far.

There are many wonderful folks who give personal support to our household.  Yesterday afternoon, John called and asked to come over for a time to talk.  John has been a support for very many years.  Mary, our friend who schedules Volunteers, had let him know that things were getting a little hard to handle at our house.  Yesterday, Edie, the leader of our Spiritual Formation group emailed about the possibility of bringing dinner over.  Don and Edie came over and we feasted on lasagna, salad, gourmet bread, some Shiraz red wine, topped off with apple crisp and vanilla ice cream.  Mary Ann slept through supper, but ate a big bowl of apple crisp and ice cream later in the evening.

It is now about 1:30pm and Mary Ann is still sleeping soundly.  She has had two rounds of the meds that come at two hour intervals during the day.  To administer the meds, I put my hand under the pillow, lift her head, put them in her mouth, hold a straw to her mouth and she drinks until the pill(s) are down.  Often, when I give her the pill(s), she gets up from napping.  The last few days when I let her head back down, she just goes back to sleep.  It has not been unusual in the past for her to continue to sleep, just not so many times in a row.

She finally got up and dressed around 2:30pm.  She ate a little more, then provided some unaided intestinal activity worthy celebration.  She went back to bed at about 5pm.  It is 9:30pm now.  She is still sleeping.  We will see how the night goes.

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Last night was pretty tough — up and down all night long, then up this morning at 6:45am.  The same is happening as I write this and has been going on for two or three hours.  There is no point in my trying to head in to bed yet since the activity is constant at the moment.  She has been climbing in and out of bed for no apparent reason with only minutes in between. 

While, again, it is a function of the disease, it is no less frustrating.  The time that I have generally claimed as my own in these late hours after Mary Ann goes to bed is coming to no longer be my time.  Tonight I set upon having some spiritual renewal time.  There is a podcast of  the Saturday worship service at the Taize Community in France.  The music is the sort that draws the participant in with a beautiful simplicity.  The readings are done in at least three, often more, languages.   There is a calm and peace that seems to include in community people like me, listening from thousands of miles away. 

I had first read a weekly poetic devotion by Fr. Ed Hayes, whose writings have had much impact on my personal Spiritual journey.  The reading suggested lighting a candle.  I haven’t done it in a very long time, but I pulled out a votive candle, placed in on the worship center, a cabinet built precisely for that purpose, with stained glass inserts in the doors.  I lighted another candle in a tall walnut candle stand made by my Dad, many decades ago.  Next to that candle stands the Shepherd’s Staff made by a parishioner and given to me at my retirement, a symbol of my forty years of ministry. 

A small iron Celtic Cross stands on the cabinet next to the votive candle.  Joining the Cross and candle on the worship center is a large ceramic bowl with lettering and symbols painted on by the other Staff members and again, given at my retirement.  The words are the summary of the congregation’s sense of purpose, “Grow in Faith.  Share Christ’s Love.”  The bowl is a symbol of Baptism, in our tradition, understood to be that first encounter with the Grace of God, an act of unconditional love by God, initiating relationship. 

One other item on that worship center is a simple memento of a long-standing friendship with a small group of parishioners from the first parish  I served as pastor.  It is a small beveled glass case with found items, pine cones, dried weeds, parts of plants, stones picked up on a trip together to Alaska many years ago.

With the candles and the light from the computer screen only,  I began the Taize worship.  As I settled in enjoying the sensations that come with such an experience, the monitor screen that keeps me aware of what Mary Ann is doing as I sit here, revealed the activity.  Since she is at risk of falling when she gets up, needs help to use the commode, to manage the cup of ice water next to her bed, to turn over in bed, her activity demands my participation. 

I have stopped and started the worship a number of times, getting more frustrated each time, resenting the loss of the freedom to enjoy the experience.  There is a odd sort of irony, that the very thing that helps me maintain a healthy equilibrium in caring for Mary Ann, is doing the opposite tonight. 

As the Neurologist allowed, I have just this evening increased the dosage of Seroquel, which is the medicine that both reduces the hallucinations and helps with sleep.  The last increase was not enough.  It is too soon to assess the effectiveness of this increase.  Certainly, the hallucinations have not decreased yet, they continue to be on the increase.  Just moments ago she told me to be careful of the little girl when I was adjusting her sheet.  This morning when she first got to the table for pills and breakfast, as soon as I turned on the light, she tried to show me the blood on her hands.  I think she believed it to be from the raccoons or whatever biting her.  There was, of course, no blood. 

Last night’s post mentioned my need for better choices in the area of diet and exercise for the sake of this Caregiver staying healthy.  Last night, today and tonight have revealed again the difficulty of following through with such plans.  When there are nights like these that string together, it is just survival mode.   A steady pattern of changed behavior seems completely out of reach.   I am still reading the book offering helps for improving the diet part of the problem.  Maybe some changes can be folded into our days. 

As Scarlett would say, “I’ll think about that tomorrow.”

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The power of music to calm, to stir, to break through defenses is a wonder to behold.  An hour each of the last two evenings sitting in front of the audio system listening to music after Mary Ann has gone to bed has been time very well spent. 

For me, almost immediately when the music begins, it is as if all the frustrations and harsh realities of the day no longer exist.  Mind you, it has to be what is in my estimation, good music.  If it is trite, or shallow, or poorly performed, I simply have to turn it off and put in another CD.  Of course music is a matter of taste.  What grabs one person might repel another. 

I generally cannot use music as a background to doing other things.  Maybe it is the structure of my brain in particular, but I pretty much need to do one thing at a time.  I either read or listen to music, very seldom do I try to do both at the same time.  When I used to walk neighborhood streets for exercise, I could listen to a CD as I walked.  If I am out in the woods walking, I listen to what is around me.  I am not interested in blocking that out with music. 

Since we are homebound so much of the time and the television is going almost constantly, having an hour just for music is a luxury.   While I usually become engaged in what is going on in the music and immerse myself in it, there is often a journey on which it takes me.  That journey takes me through my defenses, on past the frustrations of the day, into layers of being that are closer to the core of who I am.  Not always, but often, I begin reflecting on very basic issues. 

The place to which the music often takes me is a place where I can wander around in my mind and heart, looking pretty directly into my failures and weaknesses, feeling the pain.  It is not scary or depressing, just real.  There in that core of who I am lives the Grace of God.  It is surrounded in that Grace that I am able to peal away the layers behind which I hide, even from myself.  When finally the journey has taken me through the last layer, there I find a sense of security and safety. 

Don’t misunderstand.  This is not always pleasant.  The place to which I go is not always a happy place.   Often the worst of what lives in me is exposed.  I certainly don’t always like what I see.  It is just that whatever it is does not have the last word on who and what I am.  The spark of life given to me with every breath comes from a Someone who wants me to be — whoever or whatever I am.   I have to say that more often than not, no matter what I have seen on the journey, I find it exhilirating and refreshing.  Maybe in a sense it is a way to reboot my mind and heart. 

All of us are coded differently and find renewal in different ways.  Our life preservers vary.  What is common to all who are full time Caregivers is the need for life preservers to hang on to regularly so that we don’t drown in our challenges and frustrations. 

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In yesterday’s post, I said this one was coming.  I have been thinking about it for a long time.  Those of us who have full responsiblity for another human being suffer from feelings of guilt.  We just do — and yes, sometimes we actually are guilty and sometimes we are not guilty. 

There is nothing in particular that triggered my thinking about this today.  It was a long and somewhat frustrating day.  The morning routine went fine, the one through which I declare that there is some shred of control left in our lives in spite of Parkinson’s Disease joining the family twenty-two years ago.  Then some repair work that was to be done at our house was sabotaged by the carelessness of the vendor’s service manager.   The resolution of that problem is not yet in sight. 

After that start to the day, my list, the list by which I seek to create some order out of our chaos simply didn’t accomplish its task.   It did not order my day.  I didn’t do it, much of any of it.  I looked at it often.  I did some self-talk trying to encourage doing enough to check off an item or two.  It just didn’t work — I just didn’t work.

One thing that did take control of the day was the activity of the alimentary canal of the one for whom I care, about whom I care.  She was up and down, in need of an elbow to steady her, or a task to be done throughout the day.  There were anywhere from moments to minutes between the needs — no more than minutes. 

With that said, I could have, should have accomplished more. 

The guilt that is part of a Caregiver’s world is a constant presence.  It does not really have to do with how good the care is, how well the Caregiver does at responding to the needs of the one for whom they are caring.  In fact, the better the care that is given, the greater the opportunity to feel guilty. 

Caregivers feel guilty for not doing enough, not doing all that they should do as well as they should do it.  The harder they try to be the perfect, nurturing, loving, kind, thoughtful, capable Caregiver, the farther behind that goal they fall.  

The problem is obvious.  There is more that should be done than can be done by any one human being!  There are no boundaries around all that should be done to help your Loved One have all that she/he needs to have the life she/he deserves.  It is impossible.  The Disease has joined the family.  Caregivers can’t fix that.  Mary Ann has Parkinson’s.  I can’t change that.  I cannot give her back the life she deserves.

Why do Caregivers then feel guilty?  Mary Ann has been to Physical Therapy, Occupational Therapy and Speech Therapy.  We have pages of exercises she should be doing.  There are games that should be played to keep her mind stimulated.  I should get her out more, find entertaining activities to keep her from being bored.  I should learn how to cook three good meals a day that are tasty and pleasing to her palate. 

Why do Caregiver’s feel guilty?  We aren’t always nice!  I get irritated!  I get irritated when she falls after making the same frustrating choice that has resulted in a fall hundreds of times  before (literally, in twenty-two years).  She doesn’t want to fall.  She has Parkinson’s Disease and Orthostatic Hypotension and the side effects of medicines, but she still wants and needs to get up and move.  I get angry at her when the Parkinson’s deserves the anger. 

Why do Caregivers feel guilty?  Yes I love her and am completely committed to her care, but I don’t like having my biggest needs trumped by her tiniest needs.  I am well.   She is sick.  I shouldn’t resent her for something she can’t control.   The truth be known, she is no more perfect than I am.  Because she has Parkinson’s does not make the things that used to be irritating any less irritating now.  I am hardly sweet and wonderful.  I am also just as irritating and frustrating to live with as ever.

It seems to me that one challenge for Caregivers is to separate the things of which we are guilty from the things of which we are not guilty. 

We are not guilty!  We cannot do all the things we should do.  That means we will not be doing a whole list of things we should be doing.  Every helpful suggestion for what we should be doing just moves the already impossible goal farther away.  Caregivers need to come to terms with a simple reality.  We are just people.  We have a life too.  It is actually healthy for us to set limits on how much we do so that we can continue to give good care. This is a marathon, not a sprint.   We cannot make up for all that the chronic illness has taken away from our Loved One.  We will soon become completely disabled if we try.  Feeling guilty about what we cannot actually accomplish is a waste of precious energy and a weight on our spirit that can’t be carried for long without breaking that spirit. 

We are guilty.  We actually do say things we should not have said.  We do blame our Loved Ones for things over which they have little or no control.  We really are imperfect.  We do fail to do things that we could have done to make a real difference.  We take out on our Loved Ones our frustrations with the Disease by our tone of voice or our unresponsiveness or whatever subtle tools we use to punish them.  It does us no good to do all sorts of mental gymnastics to try to justify our behavior.  It is a waste of time.  We are guilty! 

What can we do with the guilt we deserve?  We can’t undo what we have done that we should not have done, or not done that we should have done.  For some of us there lies within our spirituality the freedom to admit our guilt, face it boldly. without fear, and refuse to be disabled by it.  The kernal of truth that lies in the very center of the spiritual tradition that nourishes me is that the One who chooses that I exist, loves me unconditionally with love more powerful than all the things for which I rightly feel guilty.  That love is not weak and shallow and without consequences.  It is easy to feel guilty.  We can wallow in it, get depressed on account of it, and give up trying.  Unconditional love, mercy, forgiveness is much harder.  It implies the possibility of change.   It offers the freedom to change.  It removes the excuses we use to avoid growing. 

For those who do not have a particular spirituality or do not understand there to be a spiritual dimension to life, the issue is the same.  Feeling guilty is still a waste of time.  Naming the things we have done that are actually wrong, harmful, destructive is a healthy first step.  Our primitive brain elicits words and behaviors that frustrate our humanity.  We need to face that before we can choose behavior that nurtures our humanity.  The task is to identify and accept the truth about ourselves and choose behavior that allows us to grow and change and become more than we have been. 

However we define the nature of our humanity, whether in spiritual terms or otherwise, we can find meaning in our caregiving, nurture our humanity, grow in our ability to live full and complete lives even in the company of a chronic illness that seems to be hell-bent on destroying us and our Loved Ones. 

Caregivers, are we guilty or not guilty?  Yes!!!  With that clear, let’s get on with it.  We have things to do!

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