That is a reality that Caregiver’s often simply refuse to accept.  I think one of the things that allowed me to survive and resulted in a better life for Mary Ann was that I didn’t waste much time on things I couldn’t fix.  My goal was to try as hard as possible to figure out what we could actually do that would make a difference for good in whatever new symptom or return of old one or change in the effect of a medicine or loss of ability was impacting her. 

When a Caregiver does not accept the reality that he/she cannot fix his Loved One, the frustration becomes almost unbearable.  The illusion that the Caregiver can fix his/her Loved One is often worst in folks who seek to get their world under control, folks who tend to take charge, just the sort of folks you want among your close and trusted friends, since they are not shy about saying what they think.  In a group, they are the ones that organize activities, the ones who actually get the work done.  The trouble with that view of the world is that it is an illusion.  None of us controls the world around us, really.  We might be able to keep hold of a small corner of it for a while, but sooner or later (usually sooner) something or someone messes up our orderly world. 

Another problem with the illusion of control is that Caregivers often become depressed themselves, feeling guilty that they are not doing enough.  If they were doing enough their Loved Ones would get better, they think, or more importantly, they feel.  There are frantic attempts to make things perfect for their Loved Ones so that they will be completely insulated from the consequences of the disease.  Sometimes Loved Ones, especially if they are in denial about their disease, feed into the expectations that their Caregivers should make their world work again.  I remember how often Mary Ann, when asked about meal preparation, would say without hesitation, “They won’t let me in the kitchen.”  I, her Caregiver, was “they.” 

The truth is, Caregivers don’t own responsibility for their Loved One’s sickness.  Caregivers cannot fix what they have no power to control.  Caregivers can be empathetic and caring and loving and sensitive to the needs of their Loved Ones.  Caregivers can be Advocates for their Loved Ones, especially with all those who are responsible for their medical care.  Caregivers can and should learn as much as possible about the disease so that they can be more effective as Advocates.  Caregivers cannot remove the consequences of the progression of the disease, or the debilitating side effects that come from the medications or treatments.  That is just the way it is.  Knowing that can eliminate a lot of wasted energy.  Knowing that can reduce some of the frustration, some of the feelings of failure, feelings of guilt that plague most Caregivers. 

In the moments of pain at what Mary Ann suffered, it helps to remember that I couldn’t fix her.  If I could have made her better, I would have.  I didn’t have the power to stop the ravages of the Parkinson’s Disease and Parkinson’s Disease Dementia.  She often refused to accept that there were consequences to the Disease, consequences that neither of us could remove.  While at times that caused problems in trying to keep her safe and secure from hurting herself, it was her way of coping with an impossible situation.  She needed to deny part of her reality to keep from crumbling under the weight of it. 

Her coping mechanisms worked.  She never crumbled, not even close.  Spending 24/7 with someone results in getting to know one another very intimately.  It would be virtually impossible to keep up some sort of false front.  While we went toe to toe sometimes as we confronted a difficulty of substantial proportions, she never faltered.  She moved through whatever it was, no matter how impossible, with a calm spirit, like a ship securely anchored in a violent storm.  The times that was not so happened in hospital stays.  It is why we both hated them so.  A sort of psychosis would emerge as the days went by.  In the last months, the flair ups of the Lewy Body Dementia took her to very strange places where the equilibrium was inaccessible. 

While I did not have the power to fix her, I did what I had the power to do.  She remained strong, and when the time came, she left here to find healing and wholeness.  This is one of those times I lament that tears do not easily come.  They lay just behind my eyes.  It is a sadness that I cherish.

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In the last Hospice Grief Support Group meeting, the observation was made that for many, the time of Caregiving is a time of grieving that accomplishes some of that task before the Loved One dies.  As I review the Caregiving role, especially the last couple of years of full time Caregiving, it is clear that we lived in denial.  Mary Ann’s denial was palpable.  She simply put out of her mind any thoughts of end times.  It wasn’t that she didn’ t realize what was happening.  On rare occasions, she revealed that at some level she was fully aware of what was coming in the not too distant future. 

She simply chose to engage each day as a living person rather than a dying person.  I chose denial also.  For us it seemed to be the only way to live fully each day.  Living in denial freed us to squeeze the life out of every moment we had together.  My denial was intentional.  When it came to using every tool available to sustain quality of life (more so than quantity), we did that.  I advocated for the best available treatment for her.  Having done that, found the best tools available and used them, denial as a daily mode of operation worked. 

One negative side effect was that I did not do anything to prepare for what to do when the end came.  While it is possible that the intensity of what I have felt, especially in the first ten weeks, could have been lessened in some way by choosing not to live in denial, I do not regret that choice.  Had I not lived in denial, I could not have given Mary Ann the respect she was due as someone fully alive, a force to be reckoned with.  Had I treated her in a sweet and syrupy way, displaying sympathy, feelings of sorrow for her, it would have stolen from her some of her dignity.  While I could be accused of rationalizing my own unwillingness to face the truth, I am convinced that we needed to be 100% alive while we were both alive. 

As to the negative side effect, I consciously chose denial fully aware that just as we were immersed in life until very close to the end, I would have to immerse myself in the grief and deal with it when it was time.  That is what I have been doing.  I still contend that taking on the grief fullyis the best way to get the intense grief work done so that new life can emerge.  That new life will not be free from pain but will allow that life the freedom to include joy again. 

When I was standing at the most beautiful rest area along a highway I have ever seen, I realized that sometimes beautycan hurt.  The rest area was on the shore of Rend Lake in Southern Illinois.  The sky held cirro-cumulus clouds, puffy and whispy, shaped in ways that stimulated the imagination.  There was a breeze that was warm and cool at the same time.  I realize that makes no sense, but that is how it felt.  The weather was perfect, the view impressive.  There was a huge expanse of well-kept grass that held picnic tables on slabs, some covered with a roof.  Some folks I encountered had a picnic supper there.  They always stopped there on their way from Chicago.  I spent about half an hour there, reading for a while, watching birds with my binoculars, walking around enjoying the view.  The experience was also laced with the pain of not being able to share it with Mary Ann.  I have often noticed that for me there is a longing to share with others any experience of profound beauty.  I have appreciated beauty without the pain at times, as when I stood at the top of that mound in the Flint Hills (see former post). 

I would not suggest that the denial we experienced was the way Caregiving should be done.  I can only say that it worked for us.  Would it have been better in any way had we been more realistic and accepting?  There is no way to know.

When the Parkinson’s was first diagnosed, Mary Ann insisted on complete secrecy.  No family (even parents and siblings) could know, no friends, certainly no parishioners — only the Kids and I were to privy to the diagnosis.  That insistence continued for five years.  She allowed a couple of exceptions for me so that I would have somewhere to go to process what we were going through.  Actually, I don’t remember if their Mom gave Lisa and Micah permission to share with anyone.  They may comment on that. 

Mary Ann had always been an extremely private person.  She didn’t think her personal life was anyone else’s business.  After she was diagnosed, she did not want people to be looking at her as if there was something wrong with her.  She certainly did not want people feeling sorry for her and treating her as a sick person.  I have shared before how hard that five years was on all of us. 

Finally, the secret could no longer be kept since there were too many outward signs of the disease.  When we moved here in 1996 Mary Ann’s Parkinson’s was public information among the Leadership of the congregation.  The secret was out from the first conversation by phone with the Call Committee.  In fact, by that time, Mary Ann’s Parkinson’s was in the form that I filled out for the file in the District office, the form that was sent to the congregation as soon as my name was put on their list of Candidates. 

It is here that the story of one gift that came on account of the Parkinson’s begins.  Mary Ann received some special attention from a group of ladies in the congregation.  She was welcomed in a way that made her feel accepted and included immediately.  I did not see all the dynamics of that inclusion, but I was thrilled at its effect on Mary Ann.  She quickly developed a group of friends in the congregation.  While my being the Pastor brought us to the place and provided the setting, that group became her very own friends, not acquaintances of the Pastor’s Wife. 

Before going any further, I have to say that Mary Ann had developed connections when we were in the early years in Kansas City.  She often claimed (falsely) that people were friends with her because I was the Pastor.  The truth is, I was the more boring one and she was always the more interesting personality of the two of us.  I am not particularly thrilled with that assessment, but it is just the way it was. 

In the parish here, the Parkinson’s created a need.  The need was for help.  When Margaret began and Carol took over the task of scheduling, the Volunteers began coming.  At first it was an adjustment, especially for Mary Ann, to have people coming into the house and staying with her.  First of all, her combination of strength of will and denial, caused her to resist any admission of the need for people to be there.  She seemed to manage to fall in a way that did not do damage to her, so she was not convinced of the need.  While watching the knives waving this way and that from the dyskinesias when she was preparing food, terror entered the heart of the watcher.  She was convinced that she would not slice herself. 

Since many of the first Volunteers were already friends, she tolerated the lack of privacy surprisingly well.  In fact it shocked me that she did not fight harder against the idea.  As the number of Volunteers expanded, new friendships were added.  Since often there was some need being met in another room when the next Volunteer arrived, the custom was to announce her arrival and just walk in. 

The result was that our house had an open door policy.  It was almost comical some Wednesdays when Bath Aide Zandra was here, Kristie had come to clean, it was crossover time when two Volunteers were here, one arriving and the other getting ready to leave, and the Spiritual Formation Group (four of us) were lingering for a moment of conversation before leaving after our meeting.  Rather than feeling as if folks were intruding into our lives, it was a pleasant gathering of friendly people. 

One gift that came was that Mary Ann opened herself to all sorts of relationships.  She had a wealth of friends and knew that they were her friends, not simply members of the congregation of which I was Pastor.  I cannot know what would have happened without the Parkinson’s, but it is clear that from its presence in our lives, the gift of openness to relationships grew.   

As always, we certainly would not have chosen the mechanism, but there were some consequences of its presence that brought blessing to our lives.

In a former post I reflected on the power of the word “Hospice.”  When the neurologist suggested it, we pursued that option.  It fit our intentions for how we would travel the last leg of our journey together.  Enrolling in Hospice and then seeing her looking almost comatose one Sunday morning after an increase in the Seroquel (in an attempt to manage the hallucinations) combined to finally break the dam on the tears, a dam that had been holding them back for years.  I sat in the car at the Lake on that cold morning, listening to Celtic Woman Lisa Kelly sing, weeping loudly and long.  

It had finally sunk in.  There was a part of me that somehow thought we would just keep death at bay for years to come.  Mary Ann had bounced back from so many hits, any one of which would have taken a person with less grit and strength of will.  That morning, the denial was breeched.  That denial had allowed us to live a fairly normal existence in very difficult circumstances.  The truth is that Mary Ann never let go of the denial until she chose to stop eating and drinking.  I returned to that denial, comforting myself with the knowledge that some in the Lewy Body Dementia Spouse Caregivers online support group had been in hospice for as many as three years (maybe longer).   My denial didn’t begin to crumble again until the same time as Mary Ann’s.  Of course, I knew intellectually what was afoot, but my gut was not influenced by what I knew in my mind. 

Sending out the word that Mary Ann was now enrolled in Hospice, had the effect of moving friends to come and spend time with her.  Some of our Kansas City Crew of close friends came by and spent the better part of a day.  We have decades of history together, and stories to tell from that history.  As always we had a good time together. 

Friends Trudy and Coleman with whom we shared a similar history, came by and spent hours with us.  Trudy and Mary Ann had developed a special connection over the years.  It was a comforting few hours.  Mary Ann surprised us with her sharpness at one point when she remembered a name that the rest of us could not bring to mind.

Niece Diana and her Daughter Rachel came by from Northern Illinois for a couple of days.  When we were married, Diana was old enough to be a bridesmaid in our wedding.  That visit was especially meaningful to Mary Ann since geography and circumstances had made it hard for her to keep those family connections active.  Mary Ann could no longer write letters; she could not manage the computer to email; her voice was not strong enough nor did the words flow freely enough for her to talk on the phone.  That visit sort of filled an empty place that had developed in her life since travel had become so difficult for us, preventing much family contact.

Then there was the visit of the Three Friends from the North, Joy, Terry and Cherri.  That was the most wonderful gift she could have received before her journey here ended.  I have written often about them and the raucous times when the four of them got together.  It was no different this time.  They have hung out together since they were all in about the Fifth or Sixth Grade.  The old feisty Mary Ann emerged as the stories flew by.  It was a marvel to see. 

All those visits provided a fitting conclusion to Mary Ann’s life here.  There were many Volunteers who enjoyed time with her in the final months.  Those relationships had come to be very meaningful to her.  Then when the end finally came, all of us in her immediate family surrounded her, ministering to her and expressing our love for her.  While none of us would have chosen for her to leave so soon, the last leg of the trip was filled with good and satisfying times.  Her departure was peaceful, and I have no doubt her arrival at her next destination was filled with joy and wonder and happy reunions. 

In spite of the onslaught of the Parkinson’s and the other physical assaults on Mary Ann, in spite of the struggles we both had trying to negotiate all that was thrown our way, there are some gifts that came to us and those around us.  In fact some of those gifts came because of what we went through.  In subsequent posts I will describe some of those gifts.  I described them in the words that I shared at Mary Ann’s Memorial Service in Northern Illinois.  I need to describe them again and celebrate them.

Mary Ann insisted that her diagnosis remain secret for the first five years in Oklahoma City.  Some of it may have been her unwillingness to accept that it was so.  Certainly, much of it was that she didn’t want people looking at her and treating her as if there was something wrong with her.

It was very difficult to keep that information in since it had such a powerful presence in our lives.  Recently, Daughter Lisa told me how difficult those years were for her, not having permission to talk about it openly.  Mary Ann gave me permission to reveal it to a couple of people so that I would have someone to talk with about its impact on our lives.  If I wanted to add anyone to the list, I asked for permission from Mary Ann before telling him/her.

The secret became especially difficult to keep when the symptoms began to become more visible.  She would not let me tell our best friends from KC with whom we even vacationed at times.  I can remember the evening she gave me permission to tell them.  We were vacationing together in New Braunfels, Texas.  Mary Ann stayed at the condo since she was tired.  The rest of us went to a Beer Garden in nearby Gruene.  We sat together at a table and I finally told them what they already knew, that she was sick.  I told them it was Parkinson’s.

It was helpful to be free to talk about it with folks in the congregation when finally Mary Ann gave permission to reveal what it was.  All of them were loving and caring to us as we tried to deal with it.

Mary Ann had worked with a couple of Temp Agencies when we first arrived.  After about three years of that, one of the companies to which she had been assigned, Jack Cooper Transport, hired her from the Agency.  She worked something short of full time for the next six years there.  The people she worked with became her friends and support group.

Mary Ann could not be involved much in the life of the congregation since work took all the stamina she could muster.  There was certainly no chance to have the energy to do anything in the evenings, and little left on weekends.  I took Fridays off and tried to keep up with the house cleaning.  I was not terribly conscientious at it, but I tried to get the bathrooms and the vacuuming done and the beds changed so that we could spend time on Saturday together.

We made friends as a couple with some of the families in the congregation and visited, ate together, enjoyed each other’s company at various times.  The people in Oklahoma are some of the most gracious folks we have met.  The attitude there seems to be that people are accepted until they prove themselves unacceptable.  Folks don’t wait until people have somehow proven themselves to be worthy before accepting them.

Finding a Neurologist who knew enough about Parkinson’s to deal with the complexities of Mary Ann’s early onset variety was a challenge.  We never found one!  We started with a fellow who was pleasant to talk with.  He prescribed the basic beginning dose of the standard medication, Sinamet.  It helped some, but each time we met with him, we sat in his office across from him as he sat at his desk.  He asked if we thought the dosage should be changed in any way (yes, he asked us).

Immediately after the diagnosis, we began going to the Parkinson’s Symposia done at KU Med Center in Kansas City.  They have a Parkinson’s Clinic with a national reputation.  We would drive up there, at first without telling anyone why we were going to KC.  As a result, we had access to the latest and best information about Parkinson’s treatments.  It seemed clear very quickly, that the Neurologist we were using just did not have more than a very basic understanding of Parkinson’s and the available treatments.

We looked until we found another Neurologist in OKC.  That was our worst experience.  He is the one who came into the exam room without ever looking at either of us.  He sat at a little table just inside the door, looking down at the chart.  When he talked to us, he never looked up.  It was actually very weird.  By this time, Mary Ann had been on the basic med for treating Parkinson’s for a few years.  It worked reasonably well, as is usual in the first stages of Parkinson’s.

The last time we went to him was more than I could tolerate.  He suggested that Mary Ann might not actually have Parkinson’s, but have had a mild stroke impacting the left side of her body.  When I asked why then the Parkinson’s medicine seemed to be controlling the problem, he made a circle around his ear with his finger, indicating that improvement was in her head.  By the way, any Neurologist who knows Parkinson’s at all is aware that one of ways of confirming the diagnosis is to use Sinamet.  If the symptoms improve, it is most likely to be Parkinson’s.  Even I knew that.

By this time, Mary Ann’s symptoms were becoming more obvious.  After about eight years of taking Sinamet, the side effect of dyskinetic movements becomes a problem.  Those movements are the wavy ones that are often visible when Michael J. Fox is in the spotlight.  Mary Ann never had tremors, the fast movements in a hand or fingers.  Tremors are often a symptom of Parkinson’s, but not always.  She did have the dyskinesias that come from many years of using the Sinamet.

One time when she was at work, she just slipped off her desk chair on account of those movements.  She hit her side on the corner of a two drawer file and broke some small ribs.  There was nothing other than pain medication that could be done until they just healed on their own.  Mary Ann’s co-workers at Jack Cooper were caring and supportive, always watching out for her.

After the horrible experience with the last Neurologist, we were at a loss as to what to do.  Somehow, I became aware of an attempt by a hospital in Tulsa to develop a Parkinson’s program.  It was brand new.  A local Neurologist was developing a team approach.  We applied and Mary Ann, of course, qualified.

She was scheduled for three weeks of in-patient care as they would try to come up with a medication regimen that would work for her.  Tulsa is 90 miles from OKC.  I was doing full time ministry, trying to go back and forth.  Mary Ann hated being there, and I hated having her there.  What was especially frustrating was seeing how haphazard the treatment was.  Pills were often not given at the scheduled times. (the doctor’s schedule).  The Staff seemed unaware that the timing of Parkinson’s meds is crucial to their effectiveness.  Having been to enough of the KU Med Center Symposia, I knew that protein in the stomach at the same time the Sinamet  competed with its absorption and reduced its effectiveness.  That meant there was a need for low protein meals early in the day when the Sinamet was taken and the ability to move was most crucial.  I mentioned that the Neurologist in charge of the program.  She did not consider it an issue of any importance.

The medicine regimen that Mary Ann ended up with was a fairly complex combination of regular and time release Sinamet.  A problem was that the time release version of Sinamet exacerbates the side effect of dyskinetic movements.  That was Mary Ann’s most difficult problem.

Mary Ann just could not stand staying there the whole three weeks.  She managed two weeks.  When she returned to OKC, it was apparent that she would not be able to handle returning to work.  She was on temporary disability from her work, but it was at that time that we moved, since I had been called to a congregation here in Kansas.

During the years in OKC, the Parkinson’s grew in its impact on Mary Ann and on our lives.  We never found our way to anyone there who seemed able to handle the complexities of Mary Ann’s early onset variety of Parkinson’s.

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Mary Ann slept reasonably well after settling last night.  She got up and had breakfast, but afterward opted to remain in her pajamas.  After a time, she just started fainting in her chair.  We managed a trip to the bathroom once, but the second time she fainted in the transfer chair before I could get her on the stool.  She just needed to get back in bed.

While she slept, I did a bunch of simple household chores.  It struck me how much effort is necessary just to do the most basic tasks to maintain a household. That is hardly news to anyone who has had responsibility for those basic tasks.  Having grown up in a household in which Dad did outside stuff and Mom did inside stuff, it has taken a while for me to catch on.

I did manage some time watching the large screen nature show at the back of the house.  I need to correct the pronouns in my last post.  That Oriole is “she” not “he.”  I should have known since she was more yellow than I expected of a Baltimore Oriole.  Mr. Oriole appeared at the waterfall this morning.  He has not ventured to the jelly yet, at least when I have been watching.  Mrs. Oriole has spent a number of times there today.

Mary Ann got up in the early to mid-afternoon.  Given the choice of waiting an hour for me to make a bigger meal or having a sandwich then, she opted for ice cream. You will note that ice cream was not one of the options I suggested.  We both had some ice cream.  I put the baked potatoes in the oven, and after about an hour, I George Foremanned a couple of pieces of sirloin from Omaha Steaks I had marinating in the fridge and steamed a bunch of Asparagus. By the way, I absolutely HATE cleaning the George Foreman Grill!

After eating, Mary Ann watched some television.  Daughter Lisa phoned to wish Mary Ann a happy Mother’s Day and report that some items produced by our Granddaughters would be coming later.  Since we had eaten so late, it was not long before it was time to go to the Evening Service at church.  Mary Ann had forgotten that it was Sunday.  I got changed and we headed over to the Service.

Shortly after we got back, Mary Ann was ready to go to bed.  It is a very cool and gray evening.  I have stepped outside a few times just to take it in.  I prefer the days when Mary Ann is subdued and sleeps a lot to the ones when she is so intense and streaming hallucinations, delusions and dreams confused with reality.  At the same time, on occasion when she is sleeping, there are pensive moments during which I get a glimpse of what it might feel like to be alone.  There are lots and lots of people who have faced that challenge before me.  As any will testify, that there are others does not lessen the impact when it is you.

I choose not to remain long in the pensive times.  We live in a state of intentional denial.  We have enough to deal with in the present.  We will deal with future possibilities when they become the present.  For now, we have each other.  That is our reality.  It is enough.

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…No small matter for a retired preacher.  This one came so much out of the blue, that at first I was completely at a loss as to how to respond.

The night had been a tough one.  Mary Ann just could not settle.  We were up many times.  The frequency diminished to once every half hour or forty-five minutes after about 3am.  The last one was at 4:45am before I got up at 6:30am to prepare for the Spiritual Formation group that meets on the deck (weather permitting — downstairs otherwise).  I complained to Mary Ann that I would be getting up soon and wanted at least a couple hours of sleep before then.

Mary Ann was sleeping soundly when I got up to get ready for the Group.  Since a couple of folks couldn’t make it there were only two of us this morning.  We talked for a bit on the deck until I saw Mary Ann moving.  I keep the video monitor with me during the group when there is no Wednesday morning Volunteer.

I went in, and as she was lying on the bed facing me, I asked if she needed to use the commode.  Wide-eyed and angry sounding, she said in a strong voice, “Don’t lie to me!  I know you have been out all night smoking Marijuana.  You wreak of it!”  Yes, preacher of many words that I am, I was completely baffled and at a loss to know how to respond.

It is such a mystery how those synaptic connections can create thoughts with no context.  We both preceded the baby boomers by long enough that Marijuana had not yet been invented when we were in high school.  We didn’t experiment nor did our kids have any apparent experience with it.  In fact I asked Mary Ann this morning how she knew what Marijuana smelled like that she decided I was wreaking of it.  She said the kids told her.

Realizing that since she began this interaction with the non-sequitur response to my question about the commode that I should stop lying, I tried to connect with something that might bring her back to reality.  I asked who exactly she thought it was who was up with her multiple times all night long if I was gone.  I reminded her of my complaining at the 4:45am commode trip.  She remembered that.

I got her up and to the table to eat something before Bath Aide Zandra arrived.  She seemed to be transitioning at least part way back to reality.  I then commented on how angry she was this morning — to which she responded “So would you.”   She seemed to be back to feeling that it was real and not a dream/hallucination.

I asked if she still smelled the Marijuana.  She said, yes.  Then as if to hint that maybe it was not true that I had been smoking it, she said she knew that the kids smoked it.  She had seen them the last time we visited there.  She was referring to our Kentucky crew.  Then she said that the last time the Kentucky Daughter Lisa was here she said that she smoked.  At this point Mary Ann switched to talking about regular cigarettes.  Anyone who knows Lisa realizes just how crazy that suggestion is.  Mary Ann said that Son Micah told her he did not smoke.

I don’t remember so much as a recent news broadcast that would have brought the word Marijuana into her mind, unless it has been in one of the Law and Order episodes that dominate our television.

I realize that this sounds like something worthy just laughing off.  It is not funny to me.  In fact it was scary.  I felt utterly helpless to respond in a way that could deal with her anger.  It is hard to think about how upset she must be feeling when those painful and very vivid thoughts and sounds and images, and now even scents, take hold as her reality.  It is clear that there is nothing that I will be able to say that will remove that view of reality from her mind.  I will not be able to reason it out with her.  Judging from past experience, that now will become a reality she goes back to, one that will remain with her, accessible at any moment in time.

I read pretty much daily accounts of experiences almost exactly like ours.  The online Yahoo Group of Spouses of those with Lewy Body Dementia [LBD] talk about the hallucinations and delusions and vivid drreams confused with reality all the time.  Lots of their Loved Ones have people living at their house, are convinced that their spouse has been replaced by an imposter, are paranoid about one thing or another.  It does help to a certain extent to know that we are not alone in this regard and that it is normal behavior for those with LBD.

On the other side of it there is a terrible sadness realizing that this is only going to get worse.  The deep pain is apparent when those posting in that online group talk about living with a person who is physically present but no longer the person they have been married to for so many years.  That person has in some cases ceased to exist completely.  They are not alone but very lonely.

I am very grateful that Mary Ann is still present much of the time.  It is frightening to see the times she is present diminish as the weeks and months go by.

Friend Jeanne came over to spend a few hours with Mary Ann today.  Mary Ann spent more time awake than I thought she would, given the rough night last night.  I appreciated having time to run a couple of errands.  Then we went to G’s Frozen Custard for Turtle Sundaes.

Mary Ann ate a fairly light supper and dozed with her head down for while.  Then she got ready for bed.  She has been sleeping fairly well, at least it appears so.  I certainly hope she gets a good night’s sleep. We both need it!

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