Help from Others


Who knew there was a word for it?  The online caregiving spouses of those with Lewy Body Dementia (or some form of it) recently contained a line of posts titled Anosognosia.  Wikipedia defines it this way: Anosognosia is a condition in which a person who suffers disability seems unaware of or denies the existence of his or her disability.

Actually, those who have been reading this blog for very long, have heard me describe a variety of behaviors that could be described with the word Anosgnosia. 

When anyone asks Mary Ann about cooking, her response is always: “They won’t let me in the kitchen any more.”  What she seems to be saying is that she could cook and chop and handle hot pans and sharp knives and prepare meals, if only we (I) would let her. 

Mary Ann will often start to undress while standing up, even though for a number of years now, her balance and coordination have not allowed her to do so without falling. 

She has headed into the bedroom to get sewing paraphernalia to do repair work, most often on something that ends up being a hallucination. 

While I sometimes do it, I dislike reminding her that what she is attempting  is something she can no longer do on account of the Parkinson’s.  I think the better choice when confronting some attempt at doing something no longer within her capability, is to redirect her attention to something else. 

As troublesome as are the times she acts as if she has no limitations on account of the Parkinson’s, I can’t help wondering if they are not part of the reason she is doing so well.  As much as she has been through, it is hard to understand how she is able to do maintain such a high level of functionality in so many areas. 

Today went pretty well.  She slept in late, essentially tacking her morning nap on to the end of her night’s sleep.  She had a good breakfast, a fairly substantial lunch.  We went out for a ride to Ensley Gardens (I walked through them while she chose to stay in the car) and a treat at the Baskin and Robbin’s on the other side of town. 

Mary came over, brought the promised pork, dressing and gravy, and spent about an hour talking with Mary Ann while I worked at the computer.   Since I tend to be quick to respond in conversation, my presence makes it hard for Mary Ann to be engaged in conversation.  My leaving the room for a time allows her to interact more freely with friends. 

Again, she has gone to bed early, without supper.  I guess by now I should know that a mid to late afternoon ice cream treat is going to interfere with her eating supper.  I suspect she will be up to have snacks during the night.  I will, of course, need to assist in that activity. 

The last couple of afternoons (before today), I have left the house for a time while a friend spent time with Mary Ann.  I have spent the time in a different way from usual.  Rather than sitting in the car in some natural setting to read or listen to music, or going for a walk, I have visited a number of small art galleries here.  I am pretty much devoid of any knowledge in the area of the visual arts, but I am intrigued by them. 

At most of the stops at galleries, there has been a docent or artist or owner there who was willing to spend some time in conversation.  I have learned a bit about the art scene here, and how some of the artists have approached their subjects, what processes they have used.  It has been very interesting, opening a new window on reality for these well-worn eyes. 

The conversations have nourished a discovery I made decades ago.  There is more than what first meets the eye in most of what we see.  Whether it is a landscape, a city street, buildings, trash, telephone poles, growing plants in any stage, people, there are many ways to see them.  What artists often do is provide new ways to see the ordinary.  While I have no natural ability or inclinations in producing visual art pieces, my interest has been piqued. 

One of the artists described her fascination with shadows on the water in a pond or stream or lake.  The shaded area of the water’s surface reveals what lies beneath the surface.  Lighted areas show a reflection of what is above.  It is a phenomenon I have noticed when out walking with my binoculars around my neck.  Often I will look for those shaded areas to see if I can locate fish or turtles or frogs. 

In a couple of the visits yesterday and the day before, the descriptions of a particular art piece triggered the impulse to write and preach a sermon using the piece as a visual aid.  I had enough sense to spare the poor person describing the work from my launching into three part homily on the implications of that piece for their spiritual growth. 

One of the artists described her fascination with shadows on the water in a pond or stream or lake.  The shaded area of the water’s surface reveals what lies beneath the surface.  Lighted areas show a reflection of what is above.  It is a phenomenon I have noticed when out walking with my binoculars around my neck.  Often I will look for those shaded areas to see if I can spot fish or turtles or frogs.   That thought caused my sermon muscles to twitch for a moment. 

Maybe I can convince Mary Ann to consent to a trip into KC to the Nelson again.  There are rooms filled with art pieces, some incomprehensible, some boring (in the eyes of the beholder — me), some exciting, some very thought provoking.  They also serve a great lunch in the Roselle Court.  We will see.

After such a tough time post hospital stay, this one has been a pretty good week. 

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.

Noma called this morning and asked if she and Herb could bring over a couple of bottles of Herb’s home made wine.  For a number of years, Herb has provided home made wine for the Thanksgiving Communion services at the congregation from which I retired.  He makes very good tasting wine.  Herb and Noma also brought a little meatloaf that Noma had made, and some home made peanut brittle.

The week started with Jan bringing with her a very tasty Mexican chicken pie on Sunday when she came to spend time with Mary Ann.  Then early in the week Mary brought by a large container of soup made using the Olive Garden recipe for their Pasta E Fagioli.  Jeanne came over for a part of the day today and brought a Quiche from Copper Oven, along with a piece of pie from there for each of us.  Mary Ann’s pie was one of her absolute favorites, Lemon Meringue.  Tomorrow, Mary is going to bring us some pork loin and dressing.

So much of the time Mary Ann is forced to eat my culinary creations, which I just decided to dub, Pastor Pete’s Pottage.  Mercifully, the pottage is interspersed with Glory Day’s pizza slices, Bobo’s burgers, Perkin’s pancakes and a variety of take out foods.  This week Mary Ann is eating like a Queen.  I, of course, am not wanting for good food either, since she needs help in consuming it all.

When food is brought to us, as it has been this week, very often it is brought with the instructions that it can be put in the freezer (or some portion of it) to be enjoyed at some time in the near future.

One of the best things about the food this week is that it is coming at a time when I have been concerned about getting more calories in so that she can stop losing weight.  Convincing her to let me feed her is not always an easy task, but she has let me do so here at home more often.  When I help her, she eats much more.  She has been eating very well with all the good food that has been appearing at our home. We weighed her this afternoon and found that she had gained back about a pound, after having dropped five pounds.

At lunch today, Mary Ann age a full quarter of the Quiche, followed by that very large piece of Lemon Meringue pie.  With my help feeding her, she ate every crumb of both.  She had eaten a good breakfast, the usual yogurt, juice and a large bowl of Shredded Wheat Mini-bites.

She was very tired today.  Yesterday, she got up fairly early and then went back to bed for a relatively short nap.  She ate well and was up the rest of the day.  Today, after the good breakfast, she really shut down and needed a nap.  Shortly after Herb and Noma came by followed by Jeanne’s arrival, Mary Ann got up and was up the rest of the day.

There was one episode that moved me to go ahead and increase the Midodrine that raises her blood pressure.  Between the Quiche and the piece of pie, as she was sitting in the chair at the table, she just went out, had a fainting spell.  I managed to take her blood pressure after she came out of it.  Her BP was 100/60.  That is pretty low for just sitting in a chair.  It sometimes drops lower than that, much lower, when she stands up.  (One time during a tilt table test at the hospital, it dropped to 50/30, when she was moved from lying down to 70% of the way to standing upright.)  When she is lying down it is often as high as 180 or more, over 105 or more.

I have changed out the pills in her daily pill containers so that the dose of Midodrine will return to the pre-hospital stay level.  I have also printed from the Internet an article by the National Institute of Neurological Disorders and Stroke, a component of the National Institutes of Health.  The article describes a study of a drug named pyridostigmine (brand name, Mestinon), which seems to help the problem of Orthostatic Hypotension (low blood pressure when standing) without raising the patient’s blood pressure when lying down.  The drug’s intended use is to treat myasthenia gravis.  This is an off-label use of the drug.  The study concluded that a low dose of Midodrine combined with therapeutic dose of Mestinon was able to control the Orhostatic Hypotension in most of the subjects.

I will fax or mail or take the article to our Cardiologist to see what he thinks of the idea of trying this new approach.  Our Neurologist, a nationally known authority on the treatment of Parkinson’s, had suggested the option of using Mestinon when the problem of fainting got so much worse last summer.  The goal, of course, is to gain a manageable quality of life without raising her BP to a long term harmful level.

At the moment, Mary Ann seems to be sleeping soundly.  We will hope for a good night.  The weather is supposed to be great tomorrow.  Maybe we can get out of the house for a while.

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.

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

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

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

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

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

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

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

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

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

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

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

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

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

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.

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.

“Are you going to pack up so that we can go?”  She thought we were still in the hospital.  After all the naps yesterday, the first part of the night was pretty tough.  She was up every few minutes sitting up, messing with the sheet.  She said she was making the bed.  It must have happened a dozen times with only minutes between each one.

When she thought she was in the hospital, I pointed to her quilt hanging behind the bed as I did once before.  This time she just said, “She keeps insisting,” which I understood to mean her “other self.”  She has not used that language before, but that sort of delusion is among the problems I hear about in the online Lewy Body Dementia Spouse Caregiver group.  That may not be what she meant, but it certainly sounded that way.

She settled down by about 1:00am.  Gratefully, she stayed asleep other than for a couple of trips to the bathroom for a number of hours.  This morning before 5am, she got up in need of something to eat.  I got her up and to the table for some juice and crackers.

Again this morning, she could not manage to negotiate eating the cracker without my feeding it to her.  She couldn’t manage the juice by herself either. She couldn’t seem to locate her mouth with the straw.  That has happened on occasion in the last weeks, even before the hospital stay.

Gratefully, after having the juice and crackers, she went back to bed and to sleep, and has been sleeping ever since– it is about 9:45am now.  She is moving around quite a bit in bed, but that sort of movement has been so from some years before the Parkinson’s was first diagnosed (22 years ago).  Vivid dreams with physical movements associated is one of the signs of future problems with this sort of dementia.  Of course, it is not a direct correlation, lest those of you who experience that think you are doomed to dementia.  It is somewhat predictive, but lots of other things come into play for problems with dementia to arise later in life — both genetic and environmental.  At least that is my understanding from what I have heard and read.  I am not an expert!!  Please don’t attach that burden to any observations I make.

I just glanced at the monitor again to see how Mary Ann is doing.  I did that automatic check that is natural to those of us who are Caregivers.  She was fairly still.  I waited and watched to see her body movement to verify that she is breathing.  Her current circumstances do not seem precipitous, so there is no special need to check.  It is just a normal response to her general condition.

Parenthetically, I didn’t trip the live trap soon enough this morning.  There is now another squirrel with a frightening tale to tell.

She has been sleeping now for many hours.  It is almost noon.   I am wondering who she will be when she awakens — the confused Mary Ann, or the one who is still mostly functional.  I am going to let her sleep as long as she can in hopes that she will “sleep it off” and return to the  version of normal we had before the hospital stay.

It is almost 4:30pm.  Mary Ann stirred for the first time today at about 4pm.  She got up to go to the bathroom.  We changed the disposable underwear, and I thought she would then get dressed.  Instead, she wanted to put her pajama bottoms back on and go back to bed.  That is where she is now. 

Once before she slept for almost two days after having had multiple sleepless nights which had resulted in much increased hallucinating.  She was significantly improved after that two day sleep.  I am, of course, hoping, planning, expecting that to be the case this time.  I am not so foolish as to count on it as a certainty.  She may be anywhere from completely lucid to virtually unable to function. 

As always, we will deal with what comes when it comes.  While I have in my heart of hearts ruled out residential care, this experience is causing me to reconsider at least thinking about the possibility.  I am still not actually considering it, but I am allowing a mental review of my position on the matter.   At the moment, all the options I am actually considering involve remaining here at home, adding whatever help or equipment is needed.

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.

This has been something of an odd day.  Mary Ann woke up seeming fairly alert. Very soon, she shifted to a minimally responsive mode.  For much of the day, her head hung down on her chest.  She seemed ready to roll forward out of the transfer chair.  The bath aid when she was here, Volunteer Margaret (our Parish Nurse) when she was there or I needed to hold her shoulders up to keep her from going over.

She had a routine Mammogram this afternoon.  It was quite a struggle for two techs to get her positioned and hold her up for the x-rays.

She did a little better after a mid-afternoon nap, but resumed the head down position again after a bit.  Supper was a challenge for her, but she did get a fair amount eaten.

The hallucinations have continued.  I have been back and forth a number of times as I have been trying to write this post.  For the most part, she is saying things that don’t really make any sense.  She starts to say something and then stops, apparently losing track of it or recognizing that it makes no sense.  This has been one of the more challenging times in our journey.

I recognize the head on the chest problem from many of the posts of those in the caregiving spouses of those who have Lewy Body Dementia online support group.  Again, I am hoping that this is just a temporary dip into the Parkinson’s Disease Dementia.  Since we live so close to the boundary between lucidity and confusion, there is always a fear that we will move over that line permanently.  This particular type of dementia, is very unpredictable.  People can move in and out of lucidity and functionality seemingly at random.

There have been only minutes between needs for the last hour or so.  The last trip was for another visit to the commode, just five minutes after the previous trip to the commode.  As we were taking care of that, she asked if we were going home.  I said that we were home and pointed out her quilt hanging on the wall in the bedroom.  That seemed to satisfy her for the moment that she was in her own bed.

It is these times of utter confusion that are among the very hardest for me to handle.  The constant needs that cannot be satisfied since either the words make no sense or what she sees has no substance are very wearing.  Right now it appears that this will be another sleepless night filled with constant frustration.  Then again, maybe not.  The signs are not good at the moment.

Another trip to help her sit up — lots of words that made no sense.  She did agree that she wanted to go back to bed.  We will see how many minutes pass until her next need to get up for something indiscernible.

Five more minutes, another trip to the commode.  This time she wanted something to eat.  She decided to go to the table for a snack container of applesauce.  She took my arm to walk (our usual pattern), then she wanted to continue with the walker (very difficult for her to handle), then she recognized that she needed the wheels (transfer chair), and finally we made it to the table.  All those changes happened in the span of about twenty feet from where we started at the bed to the table.

She usually feeds herself when she has the applesauce, but that wasn’t working for her tonight.  I offered and she chose to have me feed her.  After some difficulty with her trying to get something off the bed, something that was not there (didn’t I see that pile of whatever it was), she is now back in bed for how long — I don’t know.  It is about 11:30pm.  She said that Zandra would soon be here.  Zandra is the bath aide who comes in the morning two days a week.  Zandra was here this morning.

She seems to be stirring again.  Let’s see what it is this time.

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.

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

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

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

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

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

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

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

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

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

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

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

 

This is one of our most dreaded experiences.  Mary Ann felt some chest discomfort after a long nap Saturday afternoon   We had returned home from Eureka Springs Friday late in the day.  We were in the car when she mentioned the discomfort.  I gave her a Nitroglycerin pill (sublingual) and we drove to the next stop to give it a chance to work.  It did not seem to help.

She described the pain as a heaviness in her chest rather than a sharp or focused pain.  I recognized that as the Congestive Heart Failure sort of description of discomfort.  We stopped at the house to pick up a couple of things and headed off for the Emergency Room.

Sure enough, she was in heart failure.  There was Pulmonary Edema, fluid build up in her chest.  There also were slightly elevated heart enzymes which could indicate a heart attack of some sort.  The blood tests since then have indicated that there was not a heart attack, just the Congestive Heart Failure.

She was admitted so that they could go through the normal series of tests to check things out.   Of course, since it is a weekend, any tests other than xray and blood tests need to be done on Monday.

Hospital stays are dreaded not because there is something wrong with the hospital or the staff.  One problem is that the complexity of Mary Ann’s cluster of problems and the many medications taken at very specific times are hard to handle with rotating shifts and rules that are constructed to cover any liability for mistakes. That complexity demands my staying with her in the room 24/7 until she goes home.

As usual, she was up the entire first night.  And, of course, so was I.  Gratefully, she did sleep much of the night last night.  I had anticipated being up all night every night, so getting some sleep last night was a treat.  Of course there were very many times during the night that vitals were taken, blood was taken, and various other activities woke us up often.

Getting the meds from the hospital pharmacy is tedious and frustrating.  There are patterns that need to be followed that sometimes result in the timing of pills changing in ways that don’t make sense in terms of the result that is sought from taking them. The staff has been willing to accept my input, making that issue less of a problem.

The doctors are tugged in so many directions with emergencies often tying them up for long periods of time (a good thing for those having the emergency) that there is no knowing when they will come in for the report, to answer questions and give instructions.  As a result those of us who are Caregivers have to remain in the room until they arrive — no matter when in the day that turns out to be.

This morning we are waiting for the doctor to tell us if Mary Ann will need a heart cath (unlikely at this point).  Just in case the test is to be done, she can have no food or drink.  It is after 9:30am (10:30am according to her body clock since the time changed yesterday) and she has been begging for food or drink since about 6:30am.  She was pretty tired and unresponsive yesterday, so had very little food, only a couple of snacks.

One of the most difficult problems to negotiate at the hospital is that the combination of the stress, lack of sleep, medication changes, and the changed routine results in lots of confusion.  The hallucinations increase.  There have been lots of people in the room (not actually here), needles, threads, water, and just a few minutes ago, a ten dollar bill on the floor.  After confirming that it was not there, I suggested that she keep working on that one and make it a twenty.  She immediately responded “greedy.”

Sometimes in the past she has gotten pretty resistant, sometimes unwilling to do what she is asked, sometimes pulling out tubes, getting almost belligerent.  This time there has been just a little of that, at least so far.  It has been manageable.

Our Son, Micah, came for most of the day yesterday, so I had a chance to go home and shower.  It was too bad she was not able to stay awake or respond much to him.  She still appreciated his presence.  They have a good time together.

I am pleased that there is wi-fi here so that I can check email and write this.  Last night the connection was going on and off so often that I never did get this finished and posted.  I was too tired to keep waiting for the connection to return, so I gave up and fell asleep.

That is all I will write for now.  We hope to be home soon, but will, of course, deal with 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.

Robin and Margaret are such a joy to be around.  They are cousins to Mary, a good friend, as well as the one who gives so generously of her time scheduling Volunteers to be with Mary Ann.

While it seems impossible that it has been so long, it was seven years ago that they were here last.  We joined them for dinner at Mary’s home the last time they visited.  It is so refreshing to talk with people who see the world as the place where we all live together.  They have tried to make a major trip each year to places like India, China, and places whose names I don’t remember.  Of course they often visit Europe.  Robin described a breathtakingly beautiful spot in Austria where they visit extended family.

Talking with them sparks an awareness that we are citizens of the world, not just our city or state or country.  To talk about a sunset brings to Robin’s mind images of strkingly contrasting colors in the sky ten thousand miles from here.

I shared coffee cupping experiences.  I ground beans from the Gombe Project in Tanzania — of course, grinding them in the burr grinder and making the coffee in the Technivorm coffee maker from Holland — brewing at 200 degrees, waiting for the coffee flavors to bloom in the hot water before breaking the crust of the brewing grounds and only then allowing the coffee to drip through at a slow pace into the thermal decanter.

Robin talked about their monthly wine tasting parties at which they try to guess from where the wine they are tasting has come.  He loves surprising them with wines from places that would never be imagined to produce good wine.

We shared some of the freshly pressed apple cider from the Louisburg Cider Mill we had visited earlier in the week.  A couple of days ago I went to a local coffee shop, whose baker is especially gifted, and bought a dozen cinnamon raisin scones.  We had the scones with the freshly brewed Gombe Project coffee.  While the scones were quite different from the English scones, Robin and Margaret seemed to enjoy them.

Margaret was excited to see the red squirrel feeding on the back deck.  She was thrilled with the Blue Jay that came by in his fresh winter look after the late summer molting.  It was fascinating to talk about the birds and discover just how different the birds are that frequent our respective feeders.

Mary Ann was doing very well, and clearly enjoyed the conversation even though she was not able to participate fully.  It was a good day that we both enjoyed.

An update on the raccoon relocation project:  The trap was out, set and baited the last two nights, but there was no sign that the raccoons visited the deck either night.  There were rain and some storms both nights.  Maybe that discouraged them.  There is fresh bait tonight and no rain at the moment.  We will see what tomorrow morning brings!

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.

Here we go again.  Tim says it is not Belle and the twins who have returned.  It is a new family that has moved in.  Tim’s conclusion is based on two things: One is that they could not have made it back from so far and crossed the Interstate to do it.  The second reason is that his reputation as a trapper extraordinaire would be injured if it were.

As expected, the return of the raccoons and the conversation about it has sparked Mary Ann’s expectations for seeing them in the bedroom at night.  When we arrived at the bed in preparation for lying down, she looked down to the floor along side the bed to see if she could see little feet — raccoon feet.

Assuming that we accomplish the goal, I can only hope that the trapping and relocating of this little raccoon family will remove that hallucination from the library. After we completed the task of trapping and relocating five raccoons a few weeks ago, while the hallucinations didn’t cease, there were fewer including raccoons.

Today continued to be a pretty good day.  Mary Ann did well at her morning Bible study group.  She spent much of the afternoon with a friend while I ran some errands.  They were on the deck for an hour or so on this beautiful day — something Mary Ann rarely does.  This evening another Volunteer/Friend spent a couple of hours with her.  It is especially satisfying to me when Mary Ann has had a good day and time with others.  It is tough for her to be stuck with me for long periods of time without a break.  Of course, I also appreciate the breaks.  Having time apart improves the quality of our time together.

By the way, that infernal Alien from planet Pedometer Prime that is trying to take over my body managed to send me outside to walk three times today!  This is crazy!  The little device he manipulated me into attaching to my belt says I took 17,581 steps today.  On top of that, the walks brought great pleasure since the day was spectacular.  What a devious plot this Alien is perpetrating.

Gratefully, so far I have successfully frustrated his consumption of my flesh.  By eating large quantities of meat and potatoes, chips, and sandwiches and anything else I can lay my hands on, I have reclaimed the a pound or two of the flesh that he had consumed in the last week or two.  Whew!  That was a scare.

The assessment of the condition of my body in preparation for the exercise and weight control program this Alien presence forced me to join was scheduled for tomorrow.  Maybe the power of the Alien is weakening.  The appointment was written down for the wrong day and had to be rescheduled to a day a couple of weeks from now.  Maybe I will be released from this evil possession before then.

I will report the progress on this round of the raccoon relocation project as soon as there is some.

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.

« Previous PageNext Page »