January 2010


“Let’s do something special today,” Mary Ann said when we were out doing her breakfast and pills.  I asked what she had in mind.  She had no more words available or, I suppose, specific thoughts behind them. 

I agreed that we ought to do something to get out.  Let me jump ahead.  She is now in bed for the night (I hope), and we have gone nowhere and done nothing. 

Why?  Why is it fourteen hours after saying that, and we have not set foot out of the house?  Let me correct that.  I did set foot outside a few times.  When she decided to nap this afternoon, I went out and stood in front of the house as patches of sunlight came through.  In fact, I got a folding chair out and did some reading in a Spirituality Quarterly called Weavings

While she was napping, Don and Edie stopped by for a while with some freshly baked blueberry muffins in hand.  We spent a while talking inside then headed out to the deck for a while, watching a few confused geese head by.  In the course of that conversation, I think we have come up with a possible name for the waterfall and surrounding wetland/raingarden.  Don referred to it as a “bog” at one point — a name that did not strike my fancy.  Then he mentioned a couple of names that included the word “peat.”  It is not a peat bog, but it is Pete’s Bog.  To say that Don and Edie have quirky style of humor would be to understate the truth of the matter dramatically. 

One of the things that allowed the day to drift away is the cluster of tasks associated with getting us both up and going, bathroom needs met, Exelon patch put on, hair washed and dried, Miralax mixed in juice of her choice, yogurt and cereal of choice provided, pills taken, other pills put in the timers, clothes put on, my shower taken, morning household chores done.  Understand, there is no time at which we can both be doing working, one doing one thing and the other doing something else.  All the tasks are done in succession rather than concurrently.  Eating and pill taking are long, drawn out activities.  During pill taking and eating I do have a chance to do a couple of things in the bedroom, clean the commode, make one of the beds, move the lift from the front door entry to the bedroom.  The time I have to do other things depends on how Mary Ann’s spatial problems are impacting her eating and how much help she needs.  Straightening up the kitchen and cleaning off the counters, putting things in the dishwasher and others in recycling is part of my need for having some semblance of order in the household.  My office is a shambles, as is the garage and the storage area downstairs.  I just need some areas clear to provide some sense of control in our chaotic world. 

Reruns of the Closer and Law and Order, tended to draw us into them just enough that if one was nearing the end, I sat down and see if it would come out the same way it did the last eight times we saw that episode.  I concede there is not a shred of rationality in that behavior.  

We were up shortly after 8am, but Mary Ann was hungry by the time we were both ready, and all the chores were done.  I suspect it would appear to someone seeing the morning activities at our house  as if it was all happening in slow motion.  I have usually eaten my bowl of cereal toward the end of all the morning chores, so when she is ready to eat lunch, I am still full from breakfast. 

After getting her some lunch, a movie was on television.  Since it had been going on for a while, it was distracting us from doing anything else.  I went back and forth to the computer attending to emails (eats much time), while watching enough of the movie to be engaged in its strange plot.  It turned out to be a depressing movie — just what we needed as a break from Law and Order episodes. 

In the morning, when Mary Ann first mentioned that we ought to do something special today, I mentioned the idea of heading to Kansas City to visit a close friend in rehab for a broken kneecap.  Marlene has ALS and needs a fully equiped unit to keep mobility as it heals.  Surgery is not an option.  Then I mentioned that we could drop off a couple of items at our kids’ home in the KC area.  After the movie, I mentioned that option again.

It was then that she said she wanted to lie down for a while.  That was around 2pm or 2:30pm.  I tried once, around 3:30pm to get her up, but she wanted to sleep.  It was not until 5:15pm that she was ready to get up.  At that point I did get out of the house for a short time to get a burger and fries from Wendy’s for her.  She wore the Lifeline and promised to stay seated while I went.  By that time she did not want to get out in the car. 

The roller coaster between lucid moments and hallucinations continued today.  At one point I couldn’t remember the name of Kyra Sedgewick’s (Star of Closer) husband.  She remembered his first name, Kevin (Bacon).   On the other hand, when eating the Junior Bacon Cheeseburger from Wendy’s, she stopped eating after in a matter of fact voice she concluded that there were shrimp, three of them, in the burger.  She held up pieces of the bun when I questioned her claim, and she said, “See?”

After the late nap, she stayed up a little later than usual, but is now in bed.  I don’t suppose the chances are very good that she will sleep well tonight, but we will see.

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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“How long do you intend to keep caring for Mary Ann at home?” he asked.  “Until I can’t handle it any more.” I answered.  Then the hardest of all, “How will you know when that time has come?”

Since we live in a world of denial that provides us the emotional and psychic room to live each day without constant dread, those questions are not often asked and answered.  First of all, I don’t know the answer.  I have intentions about how I intend for this story to end, but I have no answers to questions about how the future will actually play out.

Two days ago I was asked those questions with which I began this post.  Today I experienced to some degree elements of the answer I gave.  As I have said in earlier posts, my intention is for the two of us to stay together here at the house at least until one of us dies.  My intention is to use as many resources as I can locate and afford to help make that possible.  That intention is not just an intellectual decision about how I intend to proceed.  That intention lives in insides.

With that said, I had to answer the question rationally.  I intend for Mary Ann and me to be together here at the house until I can’t handle it any more.  The question that has to be addressed, the hard question is, how will I know when I can’t handle it any more.  I stumbled around some as I tried to answer that hard question.  The two things that came to mind are hallucinations that get out of hand and grow into a steady stream, and the inability to get any sleep.  The two are related.

Today was an example of those two problems converging.  Last night Mary Ann was up multiple times, as many as a half dozen in an hour.  Almost every one of those times, there were people, or raccoons or other visual images not actually present outside of her mind.  The lack of sleep during the night meant that the hallucinations came in a constant stream this morning when she got up.  She asked if we were the only ones in the house, implying that she thought we were not the only ones.

By the way, yesterday, as she was eating the last piece of strawberry-rhubarb pie with ice cream (pie she had eaten with great enthusiasm for the two days before), she decided that the filling in this last piece of pie had somehow changed into tomato sauce. She ate the ice cream, but left most of the huge piece of pie. I am afraid of the day when I can’t get her to eat enough food because of what her mind is seeing.

Today, she grabbed the bedspread as I was folding it at the foot of the bed preparing for her nap.  She said there was a sheet of stamps or stickers stuck to it.  The bedspread was right in front of our eyes, she had her hand on it, convinced that she was pulling off what was stuck on it.  She told me to turn on the bright lights on the ceiling fan over the bed so that I could see the sheet of stamps.  When the light went on, she reluctantly admitted that they were not there. On the way to the bedroom tonight, she stopped and told me to get rid of “that” and then stepped over something that was not there on the floor in front of her.

This morning, when the hallucinations were at their steadiest, Mary Ann simply could not sit down for more than a minute or some fraction thereof.  She would jump up to go to one spot or another to get a good look at or pick up whatever it was she saw.  I had to jump up every minute or fraction thereof to grab hold of her gait belt so that she did not fall.  Once she was so dyskinetic when she jumped up that it was all I could do to untangle her feet and help her sit back down before she fell into a couple of tables next to her.  The activity was so steady that I could do nothing but follow her from one hallucination to another, or one task she had in her mind to do, pretty much always losing track of whatever it was by the time we got wherever she was leading me.

If hallucinations came at that pace constantly, I would soon be completely unable to cope.  The lack of sleep impacts both of us.  The less she sleeps at night, the more she hallucinates, the stronger and more vivid and more frequent they become.  The less she sleeps, the less I sleep.  The less I sleep, the less able I am to cope with the hallucinations.  They compound one another, lack of sleep and hallucinations, and my capacity to cope.

Here is how my inability to cope expressed itself this morning.  I told Mary Ann that I had been asked about how long I could keep her at home.  I told her that my answer included two things that could make it impossible, lack of sleep and streaming hallucinations like the ones that we were dealing with this morning.  It was cruel to say that to her.  I have no excuse.  My frustrating inability to cope with the constant following her to one thing and then another, after having a very poor excuse for a night’s sleep was the context, but I chose to say those harsh words. She has Parkinson’s Disease Dementia!  She didn’t choose the disease!  She didn’t choose the hallucinations!  She didn’t choose the frustrating behavior!

I guess there was a part of me that hoped the words would get through to the healthy part of her mind that has some ability to control her actions.  What she said next, broke my heart.  “Then what would happen to me?”  Usually, whatever I say just bounces off with no reaction.  This time it broke through.

I need say just how hard it was to actually write for all to see those last paragraphs revealing what I said to her.  I am ashamed and embarrassed.  I can only hope that someone reading this post has been there and said things of which you are not proud also.  I have chosen to face my own flaws head on without pretense, since it is just too hard to pretend to be someone I am not. My hope is that facing the flaws head on, will allow me to grow into someone better able to cope, a better Caregiver.

In answer to Mary Ann’s question about what would happen to her, I immediately told her of my intention for us to stay here together until one of us dies.  I told her I would use paid help here at the house to help do the care when I could not handle it by myself.  I told her that if I die first the kids would take care of her, keeping her close to them.

All I wanted to do was to get her to stop hopping up, responding to the various things she saw. She did stop hopping up, and I was able to get my shower done, make the beds, write an email or two and finish getting her ready for the Public Health Nurse’s visit.  I don’t know if what I said had any impact in that change in behavior, but even if it did, I feel no less guilty about being so harsh.

It is at times like this that I am very grateful to have a God who has openly addressed our flaws and stolen from them the power to ward off the Lord’s love of us.  That is why the song is called “Amazing Grace.”  The power of that gracious love is transformational.  It frees us to face our failures.  At the same time it challenges us to grow and change, cradled in the arms of that love.

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.

“What day of the week is it?  What month is it?  What year is it?  Remember these three words, pen, car and watch.  Do you ever feel hopeless?  If so, is it all of the time, most of the time, some of the time, a little of the time?”  Tim asked those and very many other questions.  He asked Mary Ann if I was being nice to her.  I made a point of leaving the room for some of the questions, so that my presence would not skew her answers.  He got a current list of medications.  He checked for any changes in the information from last year.  Tim is a Case Manager from our local Area Agency on Aging. By the way, Mary Ann did not do quite as well as usual.  She aced the day of the week and the month, but could not come up with the year.  In the past she has usually remembered at least two of the three words.  He always asked three or four times during the interview what the three words were.  This year she was not able to manage remembering the words at all.  On the positive side, the number of falls has been reduced dramatically.

If I understand correctly, there is such a place accessible to most everyone.  Our Area Agency covers three counties.  Tim comes a couple of times a year.  Once is the major information gathering time.  The book the Agency puts put out each year has hundreds of resources listed on its many pages.

It is through Tim and JAAA that we connected with the local County Health Department.  In fact, coincidentally, Public Health Nurse Linda from the County Health Agency will be coming tomorrow for her assessment.  She comes every couple of months.  It is through her that we have had Bathe Aide Zandra for the last few years every Monday and Wednesday mornings.  We pay for that service (around twenty dollars a visit).  Those who do not meet certain income guidelines have reduced fees for the service.

Nurse Linda brought us our flu shots this fall.  She visits to see if the Bath Aide situation is working well.  She checks to see if we have any other needs, although there are many limits on what she has time or money to do for any given situation.  She and Tim are always interested in Mary Ann’s falls, any physical problems that might have to do with her safety and the quality of her care.

Even though we are pretty well self-sufficient, it feels good to know that there are folks out there paying attention to our needs, whom we can call if major problems emerge.  We can get help finding and evaluating resources.

By virtue of being active in a church, we have additional resources available to us.  Our congregation has a Parish Nurse.  Margaret is available a couple of hours a week at church to check blood pressures.  She comes to visit regularly to bring flowers and food and help out in any way she can.

In our case, the cadre of Volunteers from church is a major support.  As I often mention in these posts, they come and spend time with Mary Ann, enriching her days, giving her social contact and a break from my constant hovering. The visits also give me a chance to run errands, or meet with friends over lunch/coffee or head out for a breath of fresh air, or have some time for reading and meditation. Sometimes, as happened earlier this week, they bring food.

One of the major support systems for me is the online group of Caregiver Spouses of those with some form of Lewy Body Dementia [LBD].  That group has so much in common that we can be completely open in sharing our frustrations and fears in language that would scare those who have not been through what we are going through.  We can share ideas that actually have been tested in the lab of daily living with LBD or PDD [Parkinson’s Disease Dementia].  It is surprising how much it helps just to discover that what your Loved One is experiencing matches what many others are experiencing.  We are able to talk in a matter of fact way about things that would be terrifying otherwise.

In the course of writing these posts I have often mentioned Mary Ann’s Tuesday morning group.  That is part of her support system.  The Spiritual Formation Group that meets at our house on Wednesday mornings is a part of my support system.  Those groups, corporate worship experiences and personal devotional experiences combine to nurture our Spiritual health.  Sustaining friendships to the degree possible also helps us maintain a level of equilibrium in our out of control corner of the world. The local Parkinson’s Support Group provides the chance to have some face to face time with others dealing with the same challenges.

Whether or not you are aware of it, those of you who read this blog are important to my ability to continue in the role of Caregiver without losing my bearings.  During each day, I think about what is going on in our lives with an eye toward what I will say in the post I will be writing next.  As I write about it, what has gone on in that day or two begins to come into focus, allowing me to gain some sort of perspective on it.  That perspective steals from it the power to disable and destroy.  The struggles are difficult enough to deal with, without my giving them more power than they already have.

While just writing about the day and processing the events is helpful by itself, it is the awareness that there are people reading those words that brings with it some external validation.  I have only numbers on a metrics page and a few comments to verify that there are people out there listening, but it makes a difference knowing that you are there.

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.

The “fall out” on this leaning day is that Mary Ann fell out her chair at the table.  She was sitting in the chair and had been leaning to one side.  I kept straightening her up.  Then, all of a sudden she was in a heap on the floor beside her chair.  She did not move slowly toward the side on the way down, she was up in the chair and the next moment she was on the floor.

She was not hurt.  It took quite a while to get her up since there is not much room between the table and the wall.  I needed to get her situated on her back so that I could pull her up using my own weight as a counter balance with our feet together as the fulcrum.

There were two Volunteers in the morning, one during the Spiritual Formation Group that meets at our house.  The other was there while I headed out for an appointment.  I don’t know to what degree the leaning was a problem during those times, but from the time I returned shortly after noon until she went to bed, the leaning was prominent.

It was at lunch that she fell.  Mary (who schedules Mary Ann’s Volunteers) came over for a visit this afternoon.  Mary Ann leaned over the side of her chair the entire time.  I helped her sit up straight again numerous times, but she only remained erect for a few minutes at the most each time.  Others in the online group of Spouse Caregivers of those with Lewy Body Dementia often mention the leaning issue.  It is neither unusual or alarming.  It does not happen every day.  This just happened to be a leaning day.

For supper, I switched chairs at the table so that Mary Ann was sitting in a heavy oak chair with arms.  It did not stop her from leaning, but at least she did not fall out the chair on to the floor.

Mary Ann seemed sometimes to be napping when she was leaning, but she was often awake while leaning.  She was tired, and has gone to bed a little early.  She fell asleep pretty quickly.  That does not mean she will stay asleep, but for the moment she seems to be sleeping soundly.

When I got her changed and into bed, I noticed that her feet are a little swollen.  I will watch that carefully.  That is, of course, a sign of fluid retention which could put her at risk of another bout with Congestive Heart Failure [CHF].  The two times she has had to go to the hospital with CHF, she did not have swollen feet.  I asked her if her chest hurt, and she said it did not.  We will certainly not go to the hospital unless the signs are absolutely clear that we need to.  We lose too much ground during hospital stays.

I talked with the Neurologist’s Assistant today about Mary Ann’s Seroquel, the medication that’s purpose it to diminish the hallucinations . It is time to renew the prescription.  We revisited the decision to increase the dosage since the hallucinations have been on the increase.  With the permission of the Neurologist I tried increasing the med early last fall but ended up moving back to the original dosage.  Given present circumstances, it seems wise to try again.  The Neurologist concurs.  As soon as the new prescription comes in, I will titrate her from the 100mg tab to the 100mg plus a 25mg for three days, then move to 150mg, one and one half of the 100mg tabs daily.  That is still not a large dosage compared to others.

Today was a sort of ingathering of food, for which we are always grateful.  Maureen came in the morning laden with food, some for the freezer (soup and bread), some for supper (roast beef, potatoes and gravy, green beans), some blueberry muffins for a morning treat, and cookies to be enjoyed for the next few days.  Margaret came later in the morning with some Jello cups, a couple of cinnamon rolls and a couple of containers of chili along with crackers.  Mary brought with her some cookies from the Copper Oven, some chocolate treats and a large container of Mary Ann’s favorite version of Seafoam Salad.  Why does Mary Ann refuse to gain weight???  I, of course, can barely button my trousers.  I could do that commercial in which buttons fly, breaking household items.

Yesterday, I had a treat.  A member of the congregation from which I retired is celebrating her 101st birthday today.  I got to hand deliver a birthday card from Mary Ann and me to her yesterday.  Bernice (pronounced Burr’ niss – emphasis on the first syllable) is one of the most pleasant, sweetest people I know.  What a joy just to interact for a few moments.  Mary Ann was in the van, so I could not stay and talk.  The last time I visited with her a little more than a year and a half ago, we talked about the early years when she was growing up, all the hard work and happy times.  While I did not make as many of those calls on the homebound as I should have, it was not because I didn’t enjoy them.  In fact, twenty-five years ago, when I was responsible for the Youth and Education programs of a congregation, it was a couple of visits with a homebound member of that congregation who was in her 90’s that convinced me that I needed to move to a setting in which I could include that dimension of ministry regularly.  It is hard to find words to describe the extraordinary faith and gracious demeanor of those two ladies.  In each case when I left the visit, my spirit had been nurtured.

A trip to help Mary Ann use the commode revealed that she is seeing people again tonight.  I hope the hallunations don’ t keep her up.  I am very tired, and hope to get a decent night’s sleep tonight.

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

“Would it be okay to bring supper over for you and Mary Ann?”  I was sitting by the phone and answered quickly.  Maybe it was a premonition.  Not really.  That is not part of my understanding of reality.  It was however a very pleasing phone conversation.

Then at about 5pm, the phone rang again: “Just a heads up, we are on our way.”  Shari and Martin are among the most thoughtful and generous people I know.  I would be hard pressed to name all the people between them they have helped out in one way or another.  They help with their time and attention.  They accommodate their busy schedules, they are both professionals working full time, to the schedules of those they help whenever possible.  I have no idea how they do it, but we are greatful at our house that they do it.

It was not just any food.  Shari checked one of the last church cookbooks to find recipes Mary Ann had provided when the book was produced.  That way she was sure Mary Ann and I would like what she and Martin brought.  Mary Ann loved it and ate more voraciously than has been her recent norm.  Catalina Chicken (Mary Ann’s recipe), baked potatoes, corn, a freshly baked loaf of bread, a hot rhubarb pie (Mary Ann’s recipe), and vanilla ice cream to have with the pie.  All of it was piping hot (except for the ice cream) and ready to eat.

That makes twice in three days, since Edie and Daughter Gretchen brought over part of the midday meal they had prepared on Saturday, a very tasty Taco Salad with wonderful and creative toppings.  They stopped by to show Mary Ann some quilts that Edie’s Sister had made.  It was a treat for Mary Ann to look at the fabrics used and the patterns and the stitching and the colors.  Norma likes best piecing the quilt tops.  Mary Ann also enjoyed that the most in the process of making quilts.  I remembered enough of the jargon from those years to recall out loud some of her experiences.  There was the first quilt, a Sampler Quilt, hand quilted over the span of two years.  There were the six baby quilts Mary Ann brought out and put in front of Becky when she was pregnant with our first Grandchild, Chloe (who, by the way, is also Son Micah and Becky’s Daughter — you Grandparents catch my drift).  Mary Ann clearly moved back to those days as she examined and handled the quilts, even if there were few words.  The quilts were strikingly beautiful.  The quilts, lunch and a pot of flowers, Gretchen had put together provided us with a very bright day in spite of the lingering fog outside.

Tamara came over tonight to spend time with Mary Ann.  She had been sick a number of weeks ago and had not been able to visit in a long time.  Mary Ann had a refreshing break from me, and I was able to get done some things in my office that demanded uninterrupted attention.  Not only that, but two more people have taken slots in the next two weeks to allow me to connect with others and give Mary Ann the stimulation of communicating with people outside of our little, confined world.

Mary Ann has been doing reasonably well in the past couple of days.  Saturday night was not the best for sleep, and tonight she just said the raccoons have returned.  I told her that there has been not trace of them in many weeks outside.  The snow would have immediately revealed evidence of their presence.  She was not convinced.  On the contrary, she simply said, “Well, two raccoons have returned!”  That does not bode well for tonight’s hope for very many hours of uninterrupted sleep.

Well, I had best get to bed.  Tomorrow will be an early day, since the Bath Aide was off for Martin Luther King Day.  I will need to get Mary Ann’s hair washed in the morning before her Tuesday morning group at church.  She was not up to going last week.  I hope she goes tomorrow.  She really enjoys that group of good friends.  They have a love and concern for her that warms my heart.

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.

Yes!!  Caregivers need a Plan B.  Today was not a good day, but it certainly did not demand a Plan B.  I spent the day with espophageal spasms of varying intensity.  It was not the worst I have had, but the discomfort made it tougher to deal with the duties that come with the caregiving role.  The needs do not change when I am not feeling well.  Every parent who has been sick has experienced the challenge of dealing with the children (and sometimes spouse) who continue to need care.

Actually, the seed for this issue was planted by some of the members of the online Spouse Caregivers of those with Lewy Body Dementia group.  There was a thread of posts talking about times either they or someone they knew ended up unable to care for his/her Loved One for a time.

The thought has crossed my mind lots of times that if I were to have a stroke or heart attack or whatever, Mary Ann might not be able to manage to call for help.  She hasn’t used the phone for at least a couple of years.  It is not at all a certainty that she could manage the dexterity and negotiate the spatial issues, the same ones that make it hard to get food to her mouth, to get the three numbers punched in order.

Then, if the EMT’s did come and I were not conscious or coherent, what would happen next?  What would she know to do to get care for herself?  She doesn’t know people’s phone numbers.  She can’t be alone for very long since she needs help with most of her personal needs.

There is a booklet we have made that contains lots of contact information and medical information that a Volunteer staying with Mary Ann can use if the EMT’s need to be called.  That book is easily accessible, but it would be hard to find for an EMT who would have no idea where it is or even that there is such a book.

If I am conscious, I have done enough checking to have options available should I have to go to the hospital.  Mary, a good Friend who schedules the Volunteers for Mary Ann, has checked with a few folks who, if they are available, would be willing to come to the house on short notice.  I have called the Agency we have used over the years for times when Volunteers were not available.  They have assured me that one way or another, they would have someone at the house within an hour or so. Our Son and Daughter-in-Law live about an hour and a quarter away.  Once they were involved decisions could be made and any major issues dealt with.

All of that is contingent on the first contact being made. As is so for people who live alone, there is the fear that it will be days before anyone discovers there is something wrong.

After thinking about this for a bit, I asked Mary Ann what she would do if I had a heart attack or whatever.  She did not really have a response. I asked her if she remembered where the Lifeline button that she wears if I am away from the house (seldom any more) for a short time is located.  She knew that it was always on her dresser next to the lamp in the bedroom when she is not wearing it.  I suggested that she go and push that button if something happens to me.  I also suggested that we practice that on occasion.  The monitoring folks ask us to test it regularly anyway.  When the button is pushed, a loud voice comes on a speaker phone unit asking if everything is all right.  It picks up sound well enough that Mary Ann’s voice can be heard.

I am going to find a place to put the contact information that will be very accessible and easy to find for EMT’s when they come, then put a very visible note somewhere that would be seen by EMT’s coming in the front door.

A Plan B is often the plan you think of when it is too late to be of any value.  I hope the online conversation and today’s minor health issue will get me moving to actually do what I am suggesting.

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.

Is it a dream?  Is it real?  Are there one of them or two?  Do you see that?  Where did it go?  Who are those people?

I can’t begin to imagine how difficult it must be to sort out all the messages that Mary Ann’s visual cortex is sending to her awareness of what is around her. It would be one thing if all the messages were confused.  That would be horrible to experience.  The insidious nature of Lewy Body Dementia is that there is not just one consistent pattern of processing reality.  Someone with LBD or in Mary Ann’s Case PDD [Parkinson’s Disease Dementia – a Dementia with Lewy Bodies] can be absolutely clear and lucid and sharp mentally one minute or hour or day and virtually unable to comprehend where she is or what is being said to her the next minute — no exaggeration, the next minute.

The online group of caregiving Spouses of those with Lewy Body Dementia often contains posts from someone who is constantly searching the landscape for studies on LBD and related matters.  Coincidentally, the day after the appointment with the Ophthalmologist about Mary Ann’s eye problems, there was a post containing the notes from a presentation by Swaraj Bose, MD, a neuro-ophthalmologist at the Gavin Herbert Eye Institute, UCI.  Here is the purpose of his talk according to the Support Group Leader, Vera James: “His main reason for speaking with us was to give us a fair idea of the eye problems and why do the eyes behave in the way they do in Parkinson’s/PSP/Atypical Parkinson’s and what the caregiver can do.”

You can imagine how pleased I was to see that timely post. What happens is that the Lewy bodies, sort of like the lesions that build up from cholesterol, build up on neurons.  With LBD and PDD, they often attach themselves to the cells in the Visual Cortex. That is one of the ways LBD and PDD are different from Alzheimer’s Dementia [AD]

The notes from the meeting included this comment: “Visual perception is defective in probable DLB. The defective visual perception plays a role in development of visual hallucinations, delusional misidentifications, visual agnosias, and visuoconstructive disability charcteristic of DLB.”

Here are part of the notes:

Common eye complaints:
#1 – Related to disturbance of down-gaze PSP.
– Difficulty in coordinating eye movements while reading even if their vision is normal, especially through their bifocal glasses.
– Difficulty in eating because they cannot look down at their food on the plate.
– Difficulty in going downstairs and stepping off curbs.

#2 – Related to lack of convergence/ fast and slow tracking- Parkinson/PSP/ Atypical PD. (Note:  Convergence means to bring the eyes together)
– Difficulty in focusing, words run into each other.
– Hard to shift down to the beginning of the next line automatically after reaching the end of the first line.
– Inability to quickly move eyes up or down.
– Inability to track moving objects or maintain eye contact.
– Double vision. One eye sees one thing, the other eye sees another and the brain brings them together. Kind of the way 3D glasses do. When you have double vision, the brain isn’t bringing the eyes together to get the one vision.

#3 – Related to vision disturbances- Parkinson/ PSP/Atypical PD.
– Difficulty in focusing/blurry vision/visual hallucinations. Visual hallucinations can be in all of these illness. Some visual hallucinations can be from to much medication, but it can also be from a lack of dopamine in the cortex where the signal is fallen and gives false images and causes these visual hallucinations also. So not all visual hallucinations are psychotic. Other things that can also cause visual hallucinations are benadryl and OTC cold meds. They can also cause spasm.
– Changes of reading glasses at a quicker intervals.
– Decreased in contrast sensitivity (difficulty in distinguishing shades of gray) and color perception.

#4 – Eyelid abnormality
– Difficulty in voluntarily opening their eyes (apraxia)
– Forceful eyelid closing (blepharospasm) .  This is treated with botox.
– Decrease in the rate of blinking (3-4/min vs. 20/min)

#5 – Dry eyes
– Burning sensation, redness, watering, itching, excessive tearing, rubbing of eyes, blurry vision.
– Double vision with one eye.  Usually results in ‘ghosting’ of images or shadowing of images.

Those notes are almost an exact list of Mary Ann’s visual problems. The eyelid issues have been pronounced for a long time.  Often she just has not been able to get them to open.  We have learned how to walk together with her eyes shut with me holding her tight at my side.  Sometimes we stumble around a bit, but we get the job done.

She has commented more than once that she is seeing two of something.  She has asked often to go to the Optometrist to get new glasses.  The burning, redness, dry eyes, excessive watering, rubbing her eyes all happen often.  She has struggled with reading for a very long time.  I can only guess that a number of the problems listed above combine to make reading almost impossible for her.

I have talked often about the hallucinations she endures. In our online group there has been a thread of posts about our Loved Ones losing the ability to discern the boundary between dreams and reality.  Sometimes Mary Ann confuses with reality what she is hearing on the television as she lies in bed at night.  I would turn the television off, but she insists on having it on when she goes to bed.

One problem, described as “down gaze” seems to fit her problem with seeing the food when eating.  One suggestion mentioned in the notes is raising the food to eye level.  Last night I got out an old lap tray and a styrofoam cooler lid to make a platform at the table on which to put Mary Ann’s plate.  It looks obnoxious, but for today’s three meals, it actually seemed to help.  I am not sure how long Mary Ann will tolerate using it.  I will look around for something more aesthetically pleasing to use regularly.  I would love to find something portable enough to use when we are out, although she will probably not allow such a public display.

I plan to ask the Parkinson’s Clinic folks at KU Med Center if they have a Neurological Ophthalmologist on their staff.  One suggestion in the notes was that such a specialist be consulted.  Most of the rest of the suggestions in the notes are things that we already have been doing.

I am glad we ended up getting the appointment with the Ophthalmologist here.  It has helped us understand better what it is we are dealing with.  Again, I am learning more than I ever wanted to know.  I am sure that M.D. degree must be in the mail by now.

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