March 2010


The birdfeeders are back up.  Will they return?  Other than the last time we had a snowfall (birds are fowl weather friends — sorry, bad pun), there have been few birds.  There has been too much activity with the construction.  Now that it is done and the bird feeders are back up, will the birds find their way back?

They will need time.  Birds can be very fickle.  If there is not food available when they want it, they will just find their way somewhere else that is better stocked.

Since the weather is so warm and the deck is finished, we are going to try having the Wednesday morning Spiritual Formation group outside.  We begin at 7:30am.  It is likely to be pretty chilly then, but it should warm up quickly.  There will, of course, be lots of hot coffee to warm our insides.

The workers completed most of the last tasks in the remodel job.  The cork floor is now laid in the sun room.  The screens are in, so we could keep the door open for most of the evening tonight.  The sound of the waterfall is loud and clear when the new sliding glass door is open. Everything looks better than I had even imagined. I spend as much time standing on the deck this evening as I could while still keeping an eye on Mary ann.

Mary Ann had a difficult first half of the night last night and slept in until about 11:30am.  During that time, CPA Twila came by with very good news on our taxes.  Retiring and not being able to work part time has the beneficial side effect of pretty much eliminating any tax liability.

Mary Ann ate breakfast at lunchtime.  She decided that she wanted scrambled eggs, bacon and toast.  I managed to get that accomplished, even adding some shredded cheese to melt on top of the eggs.  Volunteer Tamara had brought us a dozen farm eggs last evening, the ones with the deep yellow yolks.  They are wonderful.

After a hearty lunch, Hospice Nurse Emily stopped by.  Mary Ann’s blood pressure was high as usual, 172/108.  There was a little fainting.  in the morning. The daily task I thought had come to a conclusion continued today.  Mary Ann has been eating pretty well lately, and the intestinal activity reflects that.

Mary Ann wanted Chinese (Sesame Chicken) from the Chinese food counter at the grocery store.  After eating a healthy portion of the rice and the chicken (and Crab Rangoon), she ate about 60% of the two scoop treat from Baskin & Robbins that she had declined when I brought it home last night (too close to bed time).

She folded shortly after supper and headed to bed.  I need to get to bed also, since preparation for the morning group begins early.

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I can’t describe how dramatic it was when Contractor Jerry stripped off the cloudy protective covering on each side of the twelve feet of floor to ceiling glass today.  The intensity of the colors from outside, the newly greened grass, had to be seen to begin to understand the impact.  Jerry mentioned how much the art professors at the University of Kansas appreciate that the glass Four Season’s uses allows the true colors to pass through with no alteration from the gas between the sealed panes.

I am thrilled with the view.  I could not have hoped for more.  The new cork floor is almost complete.  It will be a while before we get the matter of painting the walls settled and done.  Then the ceiling fan and outside light fixture will be installed.

Tonight, the moon was full and bright.  It almost seemed like daytime.  The moon cast distinct shadows.  I sat on the deck in the moonlight, stars visible in spite of the brightness of the moon.  The monitor was in view, so I could relax, assured that I could see Mary Ann move if she woke up.

It is moments like that, bathed in moonlight, listening to the waterfall, that any frustration is simply trumped by the beauty.  It didn’t hurt that the temperature shot up twelve degrees from yesterday to about 70 degrees and the sun was shining with no interference during the day.

There also were a very revealing couple of interactions between Mary Ann and me today about the project.  She asked, “Where is Mary Ann?”  I thought the hallucnations were firing up. Then, since the subject of the project had been in the air earlier, I asked if she meant, where is her imprint on the project.

She had played the primary role in the colors we will paint the interior of the house, but the project itself has been my doing.  I have talked about other dimensions of it, included her in looking at vertical blinds and flooring, but I have been the one making most of the decisions.

It was sad that she felt left out.  I made that observation to her later in the day as I was getting her changed for bed.  She said that she was just jealous that I was able to do all of that.  What began as a an uncomfortable exchange earlier, ended up drawing us into a tender moment.  She gently touched my shoulder.  I asked her if she still loves me, and she responded that she loves me very much.  There are so few times when the words come, that it meant very much to me to hear those words so clearly spoken.

Mary Ann did pretty well today.  She did not have problems when Bath Aide Zandra was with her, even though I had forgotten to hold off on meds until after she was finished with Mary Ann.

The unpleasant task that has continued for two days as those smooth muscles that run the peristaltic movement in the alimentary canal simply have not been able to complete the journey without help is now in its third day.  Reading the last few posts will help clarify what that means in graphic terms. The smooth muscles are controlled by the Autonomic Nervous System, which has been compromised by the Lewy Bodies.

Breakfast went all right.  We ate lunch at Perkin’s.  Mary Ann was able to handle about half of the meal by herself.  I helped feed her the last half of the meal.  Supper was a sandwich that she managed to eat by herself. She did not nap today.  Volunteer Tamara spent the evening with Mary Ann.  They both seem to enjoy the time together.  I ran errands having to do with the project.  Sometimes that is the beginning of a move into hallucinations.  We will see how the night 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.

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.

It has been a very long time since there was so much fainting in one day.   Anyone who is not okay with explicit talk about BM’s should probably pass on this post.  I was grateful for a three or four hour nap in the middle of the day and more grateful when the ordeal was over this evening and bedtime arrived.

I am a seasoned veteran in what I call waste management.  It is just part of helping someone who no longer can handle those duties on her own.  I am used to the fainting spells.  They no longer scare me.  It is when the two intertwine for all the hours she is awake that it calls into question my physical capacity to do this task.

I am not grossed out by it.  I am not pushed to a high level of frustration by it.  I am just tired and sore, grateful for a break from it now that she is in bed.  Yesterday, I mentioned that Mary Ann’s blood pressure was a very low normal when the Hospice Nurse took it.  I observed that resting blood pressure that low did not bode well for what might be so when she stands up for a while.

I meant to take her BP this morning, but did not remember to do so.  As a result, I am not sure yet about whether or not to start the Midodrine, which raises her BP and reduces the fainting but keeps her BP dangerously high.

Mary Ann got up fairly late today.  It was apparent from the morning trip to the bathroom that the fainting was a problem.  We managed to get her breakfast done.  Then the bathroom trips began.  She felt that she needed to go, but there was little production.  Each time she got on the stool, she fainted.  Each time she stood up from it she fainted.  My role, as I have mentioned before, is to hold her upper body back so that she does not fall forward off the stool.

She was fainting so much that she couldn’t even sit up in her chair when I got her back out into the living room.  I just took her into the bedroom and got her into bed.  She slept for three or four hours.

After she got up, I fed her lunch and the bathroom trips began in earnest.  There was more production during the afternoon.  Once down there would be a some activity.  Then I would pull her up, hold her up and do clean up, almost always including (sorry) getting out some that would not come on its own.  Then as that was going on, she would faint again.  Trying to get her into the sitting position when she is only partially conscious and holding herself stiff, takes all the strength I can muster.  The torso has some pretty powerful muscles.

Each time we went in, there would two or three repeats of that same pattern with occasionally a few minutes of just sitting there holding herself up. During those times, I stayed close to her so that I could get there immediately when she popped up.

Most of the next couple of hours contained those trips, each about the same in terms of my role.  When Mary Ann was not in the bathroom, she was in pop up mode.  She has absolutely no awareness of the risks of getting up no matter how often she faints or how much I remind her not to get up without my helping.  At one point, I had to click the seat belt on her transfer chair to slow her popping up so that I could finish folding the clothes from the dryer.

What I have described above is a very normal activity for Caregivers of those with Lewy Body Dementia.  I can hardly complain.  Others have a far more difficult time than do I.  I write in such detail first of all for selfish reasons.  It helps me to put into words and sort of “get off my chest” just how difficult a day can be.  I hope that the detail also provides a point of contact for those who are experiencing the very same thing but have no one to talk with about it.

I also hope that those of you who have friends or family or acquaintances who are caring for someone, will realize what they are going through and cut them a little slack.  If they are whining, they are doing so for good reason.  You don’t have to try to fix their situation, just listen patiently without immediately changing the subject to something that is going on in your life or tell them about all the other people who have it worse than they do.

Tonight, I am wondering if there is a direct correlation between the low blood pressure fainting issue and Mary Ann’s ability to keep on track mentally.  Shortly before going to bed, she stood up and called me over.  I asked what she was doing.  She seemed distressed and said she was leaning against a wall.  Her eyes were open, not slammed shut as happens sometimes.  She was in the middle of the living room, in front of the television.  When I said there was no wall, she responded, “Did they take it down?” (Probably a memory of the removal of walls in during the sun room construction.)

Moments later in the bedroom, she asked what day it was.  I answered, “Saturday.”  Then she asked me if I was preaching tomorrow.  I asked her when the last time I preached was.  She said, “Last Sunday.”  I asked her if she remembered that I had retired almost two years ago and had not preached since.  She just looked puzzled.

While she does get confused and have delusions and hallucinations and dreams that she cannot tell from reality, those interactions tonight, seemed a little extra odd.  That raised in my mind the question of the impact of so many times today that her blood pressure was too low to keep an adequate supply of blood flowing to her brain.  I am wondering what sort of cumulative effect that has.  If that is the case, it complicates the current decision not to give Mary Ann the Midodrine that raises her BP to harmful level.  There is nothing easy about dealing with this combination of diseases and debilities.

f 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.

Last night Mary Ann told me that they were trying to trick her.  They were trying to convince her that she was not in her bedroom.  That is a Delusional Misidentification Syndrome called Reduplicative Paramnesia.  It is the belief that a familiar object is actually a substitute for the real one.

Those whom Mary Ann calls the Thursday people were back.  I think it was they who were trying to convince her it was not her bedroom even though it looked just like it.  At least one other time during the night, she asked if the people had settled down yet. As I have mentioned before, I do not want to reinforce the delusions and hallucinations, but I don’t want to dismiss them since they are real to her.  I try to explain that they are not real in a way that I can see them or do anything about them.  Gratefully, she is not terrified by them.  Hospice Nurse Emily confirmed that today when she asked Mary Ann about the hallucinations.

The problems related to what information her visual cortex sends to her awareness are one of the signature symptoms of Lewy Body Dementia and the Dementia that comes to some Parkinson’s Patients.  It is the problem with delusions and hallucinations that often force the issue of using residential care.  As challenging as they can be, with the help of Hospice, I am determined to avoid any residential care other than perhaps a respite day some time. So far the hallucinations are not so strong and so constant as to be impossible to handle.

Today, again, there were multiple events of syncope (fainting) associated with trips to the bathroom.  I suspect that I held her up on the stool upwards of a half hour adding together ten or fifteen minute segments.  When Hospice Nurse Emily took Mary Ann’s blood pressure this afternoon it was 118/68.  That would be good for a twenty year old.  When it starts out that low, it can, of course, go much lower when she stands up.  I have been trying to manage the fainting without resorting to the Midodrine that raises it.  The high BP is so harmful to her heart and kidneys especially.  If it remains that low, I may need to reconsider restarting the Midodrine.  The Cardiologist has given me the freedom to decide whether to give her the Midodrine based on our quality of life.  The preference is to avoid using it.  Those sorts of decisions place a lot of responsibility on my shoulders.  Yes, I am the one with the best vantage point for making the decision, but I feel the weight of that responsibility.

Gratefully the fainting spells were over just before Hospice Aide Sonya arrived at 11am to wash her hair, give her a shower and get her dressed.  Sonya said that Mary Ann did fine. After the shower, we headed out to do errands and to pick up lunch for Mary Ann.  It was a favorite of hers, steak soup and lemon meringue pie from the Copper Oven.

Again after Nurse Emily left in the mid-afternoon, we headed out for errands.  During that run, I picked up some flowers for Mary Ann.  Daughter-in-Law Becky had won a commitment from me to get Mary Ann flowers regularly in trade for adding our cell phone to their account. Do you see why we think so much of our children and the ones with whom they have chosen to spend their lives?

Of course that trip had to include a stop at Baskin & Robbin’s.  Those of you who have been paying attention will probably want to remind me that late afternoon ice cream treats ruin supper and make for tough nights including lots of snacks.  I know!  But the ice cream tastes so good.  She went to bed not too long after 6pm, and yes she has already gotten up to eat a sandwich and some applesauce.  That was around 9pm.  I hope that is enough to get her through the night.

Even with all the ice cream, I reported to Nurse Emily that Mary Ann weighed in at 113 pounds yesterday.  That is down from the last time, 114.5, but up from the time before that, 112.5.  That is about 10% less than she weighed not too many months ago.  At least she seems to be holding her own at the moment.

There is one way in which her weight is an advantage.  Most of those who post in the online Caregiver Spouses of those with Lewy Body Dementia are women caring for their husbands.  A number of them in the last couple of days have talked about the predicament of having their almost 200 pound husbands fall, leaving them unable to get their husbands back up.  Most of them have had to call 911 to get their husbands back up.

I am grateful that Mary Ann is light enough for me to handle most of the time.  Reading those posts, I appreciate how easy I have it by comparison.  I feel a little wimpy when I have trouble getting her off the floor.  It all has to do with where she is located when it happens, whether I can get her in a position that allows me to pull her up and whether or not she is alert enough to help in the process.  When she is partially asleep or feeling very weak, picking her up from the floor with no assistance from her is almost impossible for me to do without risking damage to myself, thereby rendering our system unworkable.  We do have a Hoyer Lift to use if she is located in a position that allows me to get the sling under her.

It is getting late, and since i have had to get up fairly early each day to prepare for the workers on the remodel project, I am anxious to sleep in a little while tomorrow morning.  That will be up to Mary Ann.

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The only question was how long the improvements would last.  It was a somewhat restless night with confusion at various times during the night as to whether or not it was time to get up.  Mary Ann got up early this morning and the hallucinations were back.  They have continued.  The sheet that was over some items in the living room to protect from the dust of sanding sheet rock joints became someone sleeping on the raised hearth of our fireplace.

Since we had a day free of any appointments or plans of any sort, I suggested we go for a Bear Claw and coffee at Panera’s.  We started out pretty well.  After a while, Mary Ann began shutting down, and needed help getting pieces of the Bear Claw to her mouth.  Then as soon as that was done, she crashed.  She could no longer keep her head up.  She lay it down on the table at Panera’s.

I got her into the car and back home.  She wanted to go to the bathroom.  It was no small task to get her out of the car up the two steps and into her transfer chair.  Then I had to hold her up with very little help from her as I transferred her from the transfer chair to the toilet stool.  Holding her up while getting clothes down is especially difficult when she can’t help.  She had crashed enough that her eyes were mostly closed, and she had trouble figuring out where to put her feet and what to do next — even with words describing to her what to do.

We had some minor waste management issues but got the job done.  It was at least as difficult to get her transfered back into the transfer chair.  Getting her clothes back on took more physical effort than usual.  Admittedly, I was glad to get her into bed for a nap.  I am hoping that she will sleep off some of the confusion.

At times like this, I feel pretty vulnerable physically.  I am stressing and straining and twisting and turning in ways that certainly put my long term and short term functionality at risk.  The other night, Mary Ann was just not putting things together mentally when I was trying to get her on to the commode.  When we get to a certain point in transferring, she needs to sit down fairly quickly to make sure the flow ends up where it should.  I had to physically bend her body into the sitting position, and get her seated on the commode. She just could not connect with what to do.  That was one of the times I worry about what I may be doing to myself that has potential of interfering with our system’s ability to continue to work.

Mary Ann slept for about four hours, got up and ate.  She continued to seem confused and unsure of what she wanted to do.  We have been to the bathroom many times with as few as fifteen minutes in between.  Most often there has been no action once there.

She lay back down at abour 4:45pm.  She got up again at about 6:30pm for supper and some television.  She headed back to bed a little after 8pm.  I am hoping she will sleep better tonight.  We did not get ice cream this afternoon, so she did eat a half sandwich for supper.  That probably will not be enough to make it through the night.  As always, I hope for a restful night, but will, of necessity, accept whatever comes.

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.

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.

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