The Caregiver Calling

Last night when I helped her to the commode, while sitting there, she told me she was in jail.  Another time when she sat up on the side of the bed I heard her say, “we are unarmed.”  Who knows what that was about.  This morning she was angry with me that I couldn’t understand that she had to pick up her Grandmother (of course gone for many decades).  Then when we went in to get her dressed, she said something about the fact that her Grandma died, and if it were my Grandma, we would be get there right away.

She is at the table in the heavy chair with the arms, subdued and dozing off and on, with her head lying on the table.  Yesterday I asked her often if she wanted to move. She always answered firmly that she was fine.  I am not bothering her so much today, but watching her moves using the A-V monitor screen by the computer at which I am sitting.

Last night was worse than the previous two nights, if that is possible.  Actually, the first part of the night, about 11pm to almost 3am, was within our more bearable norm of just being up a few times.  As I reported in my post last night, she was almost wild with the hallucinations and activity as if she was overdosed on speed before she finally agreed to get in bed.  It started again some time around 3am.  She started getting up on the side of the bed, talking and wanting to get up, dealing with the dream or hallucination of the moment.

In the 4am to 5am hour, the times up were as close together as three minutes.  She was very upset with me, as was I with her for that matter, that I insisted that she lie back down.  Finally shortly after 5am I just gave up and got her up to come out to the table and eat.  I knew it was too early to start the daytime pills.

It was not easy to get the food in her mouth, but she managed some yogurt and toast.  She was still hallucinating much of the time.  By about 7:15am, she was ready to lie down.  I went back to bed also since I have been pretty wasted with the short nights and challenging nights and days.  She slept about an hour. Then we got up, got her dressed and gave her the morning pills withmore yogurt.

With both of our kids, Lisa and Micah, emailing the same response at the same time that I had reached that conclusion, I have phoned Home Instead to see if someone could be found to stay with Mary Ann overnight some time very soon.  I will talk with them again on Monday.  At the moment, they have a number of folks out sick, so it will be some time before this can work out.  One option is their $150 for a twelve hour shift overnight.  That one won’t work for us, since that is only doable if the person staying with her is  up a maximum of four times to help her.  If that were the maximum times I was up with Mary Ann, I wouldn’t need the help.  That would be a great night in our world.  The next option is the hourly one. It runs $16-$18 an hour. It is certainly worth it to me for the sake of survival.  I will probably start with one night a week.

The problem, of course, is that the current situation is almost no longer doable.  It is hard to imagine being able to handle that all day long seven days and all night long six nights a week.

In checking with the online Lewy Body Dementia Spouses group, some others have had problems with Seroquel.  Some found it to be a problem at a larger dose, but workable at a lower dose.  One of them even used the description, “as if she was on speed.” that I had used before reading that post.

I have to decide whether to take the next step tonight by increasing the Seroquel from 125mg to 150mg.  This is not an easy choice.  The hallucinations had been increasing to an unbearable level before I increased the Seroquel from 100mg to 125mg.  I had been waiting anxiously for the batch to arrive in the mail, looking at the increase as the hope for returning the hallucinations to a manageable level. The first morning after I increased the dosage the first step, there was a hint of a little more lucidity.  That faded quickly and the frequency and intensity of the hallucinations ramped up even more.

Do I take the next step in hopes that the evidence is wrong, and it might begin to improve the situation rather than make it worse?  Do I respond to the evidence that it seems to be making the hallucinations worse and pull back?  At the moment, I do not know which I will do.  I don’t know how much risk there might be of another increase making the problem worse and moving us farther down the road permanently.  With LBD it is common for strong meds to cause a loss that cannot be regained.  That level of vulnerability is one of the ways LBD differs from Alzheimer’s Dementia.

Whatever I decide, assuming this does not improve, next week I will phone the Neurologist’s office at KU Med Center’s Parkinson’s Clinic and ask for a full review of her meds, to see what changes might have some hope of mitigating this pretty much untenable situation.

I suppose I will also make some phone calls, possibly visit, one or two places that could serve as options if this ceases to be doable at home.  In talking with my daughter, Lisa, the idea of hiring someone either to live-in and help out with Mary Ann a few hours in trade or someone to stay a couple of nights a week re-emerged.  We did have someone we hired for a few hours a week some years ago. I still have an active federal ID number and state withholding tax number just in case we go that route again. We have a finished basement with egress windows in the bedroom and living area, and there is also a large full bath (shower only). That space was finished to allow the option of live-in help if we needed it.

I guess we have been in the frog-in-the-kettle mode.  Things have been moving past being manageable at such a slow pace that I didn’t really realize how hot the water was getting.  I guess it is time to find a way to reduce the heat before our frog is cooked (or goose – take your choice).

Mary Ann stayed at the table, I got lunch for her, and she ate very little.  At about 2pm, after a trip to the bathroom, she stopped at the bed and indicated that she wanted to lie down.  She has been down for about an hour now.  It is such a relief that she is sleeping for her sake and for mine.  While sleeping during the day is not always a good idea, any time that she is resting and secure is a wonderful respite for me.

Our Son Micah phoned and will be coming over with our Daughter-in-Law Becky and Granddaughter Chloe this evening.  It is over an hour one way, and Chloe had indoor soccer and basketball games today, so we really appreciate them coming after a long day.  They arrived in time for us to order pizza.  Mary Ann was not ready to get up from the nap she started after lunch.  She did get up when supper came. 

She was moderately responsive, compared to having been almost completely unresponsive most of the rest of the day (other than the morning hallucinations).  She did eat a little of the pizza (cheese sticks).  She went to bed again while they were still here. 

It was very helpful to me to be able to sit and talk with them and hear how they are doing.  It was good for Mary Ann also just to have them around.  It was a low key evening, but just spending the time together seemed to lift for the moment the pall that has been settling over us last few days in particular. 

It is done.  I gave Mary Ann the fully increased dosage of Seroquel tonight.  One option that is unfortunately the more likely one is that by three or four in the morning at the latest. she will be bouncing off imaginary walls.  If and when that happens, I will be running after her as she does.   The less likely but preferred option is that she will finally sleep well and have fewer and less intense hallucinations tomorrow. 

And so the ride goes on! 

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Mary Ann had vivid dreams all night long, waking often, sometimes only minutes after the last time up.  Even though she was up, each time her visual experience and awareness included whatever she was dreaming.  The people now had a baby.  She and they were in Alaska.  More than once when she awoke, she was in Alaska.  She was never here at the house sitting on her bed.  Each time I had to try to convince or just raise my voice and insist that she lie back down.  This went on throughout the entire night.

Of course, more than once she wanted to get up and get dressed — mostly to go back home.  Once I woke up with her sitting down on my bed almost on me, unaware of where she was.  When I woke at 7:15am (having been up with her at least two or three times an hour until 6:15am before that) she was sitting on the edge of her bed, pj’s off, determined to get dressed.  She, of course can’t do so without someone getting the clothes and putting them on her.

I got her dressed.  Then we went out for pills and breakfast.  She was doing lots of hallucinating during the course of that time, but they were more manageable than last night.

After eating, I left her at the table since she seemed settled there.  I asked if she was okay there while I took my shower and cleaned up.  She said yes.  I was glad she did since part of the reason for my leaving her sitting there is that the chair she is in is heavy and has arms, not allowing her to hop up and fall.  She has now been sitting at the table for over two hours.

She did manage to lose track of how she was holding her cup of ice water and ended up pouring it out on the table.  Much of the time she was sitting there she was making eating motions as if she was picking things up from the table and putting them in her mouth.  After a while she lay her head on the table.  I asked her a couple of times if she wanted to go in and lie down for a nap, saying that it would be better to nap earlier in the day than later.  Once she sort of snapped back that she was fine — the tone was, “just leave me alone.”

Her head has been up and down at various times.  I headed out to the dining room every ten minutes or so to ask if she needed anything.  She has stayed there all morning, always responding that she is fine..

County Health Nurse Linda came by and gave us out H1N1 flu shots.  Mary Ann was a little responsive to her.  Later I asked if she was hungry.  She said yes.  I reheated the half of a hamburger sandwich from yesterday and brought her Pepsi and chips.  She had her face pretty much in her plate and got a bite or two of the hamburger.  Each time I offered any sort of help, she refused it.

Then she dumped the Pepsi out on the table as she had her water earlier.  After cleaning it up, I got a cup that was left over from when our Granddaughters were here.  It is a small plastic cup with a tight lid and a large plastic straw that reduces the leakage should it go over.  That is now there for her to use.  She did drop in on her chair, but nothing leaked out.

Finally, after a long time of getting no food, I asked her if she wanted any of Mary’s Jello, Cool Whip and cottage cheese salad.  I brought it and asked if she would let me put the spoonfuls into her mouth.  She agreed.  At least she got some nourishment.

After a bathroom trip, she wanted to return to the table.  The television is on, a loud submarine war movie that sometimes catches her attention.  Her head is on the table at various times.  I continue to check on her and ask if she wants to move back to her transfer chair by the television (her usual spot) or lie down in the bedroom for a while.

Last night returned me to the edge of my capacity to handle Mary Ann’s needs here.  Once a few years ago, when discussing Mary Ann’s care needs with our daughter, Lisa, who served as an Administrator of a very large multi-level care facility for the older population (CCRC), she said that at that point already, her Mom would not qualify for a room in an Assisted Living facility.  She was already then past that point into full nursing home care.

The person I cared for last night would need to be in a locked Dementia wing.  I just came back from checking on her at the table, asking if she was okay there.  She said she would be there for a while.  I then went back and asked her where she was.  She answered, “Kansas City.”  Thinking she was just confusing Kansas City with where we live now since they are so close together, I asked if she was in our town, our house, sitting at our dining room table.  She looked around as if she was trying to figure that out, but did not answer.

Today I am looking at two options that seem unacceptable to me.  First of all, right now, this moment, what she is doing is something I can handle.  Last night’s experience would not be tolerable to me for more that a day or two, if that, certainly not for days and weeks and months and years.

At the same time, the thought of Mary Ann in a Dementia Unit all day and all night is intolerable to me.  At one point yesterday, she asked about my lunches with Jim and John the day before.  She was asleep all day. I had no idea she actually had a conscious awareness of those events (John’s was a coffee).  Then this morning when she seemed to be in hallucination mode, she asked what Jim had to say, referring to the lunch day before yesterday. If she was living completely in a world of hallucinations, it would be one thing.  She is back and forth.

Then, if she were to be in such a unit full time, I would not be able to tolerate leaving her alone for long periods of time.  The thought of spending most of the time, most days, in the Dementia Unit with her, is pretty tough to take.  I have been in Dementia wings, making calls on folks for a few decades, experiencing all that comes with such a place, even at best.

Add to that the loss of much of what we have worked hard over the years to save for our last years and for our kids is a tough pill to swallow.  If using most of those resources would provide a good quality of life for us it would be one thing.  The option it would provide is hardly that.

She ate only a few bites of supper.  She would not allow me to help.  With great difficulty I have now gotten Mary Ann to change for bed and lie down.  She has been completely convinced that she is not at home.  She has tried again and again this evening to get me to take her home.  We have walked around the inside of the house and to the front door.

I am going to check with the online group to see if others have had an increase in Seroquel do the opposite of its intended purpose of reducing hallucinations.  Again this evening, I had to be virtually at her side every minute, constantly trying to connect her with reality, almost completely unable to do so.

I wonder if there will be any sleep tonight.  At the moment I am not very hopeful about that.

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“Allen, the guy you were engaged to when we started dating wishes you well,” I told her this morning.  One of her long time friends from those years mentioned in an email that he had asked about her.  I waited to mention it until she had come out of the worst of the steady stream of hallucinations.  In a very matter of fact way, she said “that was from the past.”  Later I asked her what year in school he was in relationship to her.  She said he was in her brother’s class in high school, two years ahead of her.  By the way, before tongues start wagging, I didn’t know she was engaged, and she was already planning on sending the ring back.  He was in Florida and she was in Northern Illinois.

Last night began as I had expected after Mary Ann napped for over six hours during the day.  She was up many times during the first part of the night.  Most of the times she was up, she just sat on the side of the bed.  I came in to ask if she needed anything each time.  She asked if we could go home, almost every time.  I pointed out her quilt hanging on the wall and tried to convince her that she was in her bed, it was night time and she could lie down and go to sleep.  

I went to bed pretty early.  She continued to get up for a while, but finally settled and slept the rest of the night reasonably well (with the usual interruptions).  Just once she ended up on the floor next to the bed.  She did not try to get up early, as she had most of the last few mornings.  When she did get up. the mild hallucinations were still there, picking up things, pulling threads (or the thin gold chains) off her hands.  She was not having the steady stream of hallucinations that included people, and her mind seemed clearer.  

I will admit that I have been getting more and more concerned about my ability to continue this task as the intensity and frequency of the hallucinations has been increasuing so steadily.  This morning’s clearer time was a tremendous relief.  It may only be momentary, but it provides some hope that the roller coaster ride still has the capacity to go back up for a time. 

Jacki came to stay with Mary Ann and spend lunch time with her.  I had another lunch out with a friend.  As far as I know, Mary Ann did fine while I was gone. 

By the way, I made a very important discovery as I drove back from the lunch.  I stopped to see the progress of the newly remodeled space that had been the Baskin & Robbins that served as our regular supplier before the owner retired.  It is now an enlarged space that will open this Monday, a brand new Baskin & Robbins.  And some say there is no God! 

Back to the day.  Parish Nurse Margaret stopped by with a request that we help dispose of some box lunches left over from a meeting.   We graciously agreed to help her out in her dilemma of what to do with them.  We are such good people!  I asked Margaret if she would take Mary Ann’s blood pressure.  It was 170/90.  Apparently, the Midodrine is working to keep her BP high enough so that she does not faint.  We continue to accept the slow damage being done by the high blood pressure in trade for a better quality of life resulting from reducing the fainting spells (Orthostatic Hypotension).

Mary Ann was obviously tired this afternoon, but she was willing to go to the grocery.  We ran into a neighbor and friend, Ann, there, always a treat.  After we got home we ate the box lunches.  Mary Ann was in bed about an hour later.  She got up moments ago to tell me about a dream.  When I got her back to bed she looked out the bedroom door and said the people were back, this time with a baby.  After a time sleeping, she sat up again.  When I went in, she said the family how has a horse.  Then she asked if she was in Topeka.  She said in the dream she was just having, she was in Alaska, and the family was there with the horse.  I told her that I was glad they were in Alaska, maybe they could stay there and not bother her here.  She is back in bed.  I have no doubt the family will return to Topeka and be back in our house.  We will see how the rest of the night goes. 

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She asked, “Do you need some help?”  She was at the table for pills and breakfast this morning (6:15am) looking across the table at someone or something.  I asked her who she was talking to. She answered, “Santa Claus.”  She was serious.

Then she asked if I had talked with our Daughter, Lisa, last night.  She heard Lisa saying, “Help me.”  Lisa, of course, lives in Kentucky.  She saw Granddaughter Ashlyn, who also lives in Kentucky, on the other side of the table doing something, she wasn’t clear what. I am not sure I convinced her that Lisa and the girls were not here in the house.

I had gone to bed extra early last night in hopes of catching up on some sleep, but it was another difficult night.  She was up a number of times. Twice (in the 3am to 5am territory) she got up for some reason and ended up on the floor next to her bed.  She was not hurt at all.  I was having some distressing back/rib pain that made it unrealistic for me to try to lift her.   I pulled over the walker and tried to position it and hold it down so that she could very slowly and with great difficulty pull herself up enough each time to get into a sitting position on the bed.

The Bath Aide, Zandra, came to give her a shower and wash her hair later in the morning.  Zandra commented that it was the first time Mary Ann had seemed to be almost completely unresponsive to her.  She also reported that Mary Ann had been handling the thin gold chains she often thinks she has in her hands.  When we talked about the day at supper time tonight, Mary Ann said she could not remember Zandra being here at all today.

She certainly had no memory of the rest of the day since she went down for a nap around 10am or 10:15am,and did not get up until 4:50pm.  She only ate a small container of yogurt and a muffin for supper.  She watched some television and we moved into a time of intestinal activity that included a number of trips demanding my help in obtaining results concluding with some unaided production.  Hopefully, she will feel better for a while.  She has settled on to the bed at about 7pm and is napping again.  I don’t know if she will get up for a while later or l just get up to take her bedtime pills at 8:30pm, change for bed and then lie back down for the night. The odds of Mary Ann sleeping much tonight are slim to none.

During the day there were two Volunteers, Rebecca and Clarene, with Mary Ann at different time, one right after the other.  While I had the benefit of the time away, Mary Ann and each of the Volunteers had no time to enjoy one other’s company.  She slept through the entire time each of them was there.

The time today provided me a chance to lunch with a good friend.  It was helpful to be able to talk openly about lots of the dynamics in our lives.  Later, there was  long conversation over coffee with another good friend.  It was especially helpful to have those times in safe settings with trusted friends to process the more challenging place to which we have come in our household at this point in our journey.

This afternoon the new batch of Seroquel arrived.  Tonight I will increase the dosage from 100mg to 125mg.  I will continue that for three days, then move to 150mg.  To be honest, I don’t actually expect it to make any difference in the hallucinations.  I could be wrong about that, and I would like very much to be wrong about that.  When we tried increasing to 125 last fall for a couple of weeks, it did not seem to make any difference at all.  On the hopeful side, it has often been our experience that a medication had virtually no effect until it reached the therapeutic level.  Maybe 150mg will take Mary Ann across a threshold that 125mg did not yet breach.

I am concluding this post earlier in the evening than usual, hoping, not expecting, but hoping for a few hours of uninterrupted sleep.

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I thought I would check to see if Mary Ann had any hallucinations at Bible Study this morning, away from home.  She told me that there was a twenty-one  year old walking around the room during Bible Study, behind the ladies sitting across the table from her.  I am fairly sure it is very unlikely that there was anyone walking aroud the room they were in, but I will check with someone in the crew to be sure.

I just checked and found out that she did ask quietly of Mary (schedules Volunteers and was sitting next to her),  “Who is that girl over there?”  There was no girl.  Gratefully, Mary knows our situation well.  Mary added that Mary Ann stuck her tongue out at her when she asked if Mary Ann had taken her medicine.  That is the Mary Ann I know!

I just read another post by one of the folks in the online group of Caregiving LBD Spouses.  She mentioned the problem with her Loved One blaming all sorts of things on the imagined people.  It is a paranoid delusion in his case.  Many of those in the group describe their Loved Ones saying often that “they” are doing this or that.  I suppose it is likely that this problem will grow at our house as time goes by.

Mary Ann napped for a couple of hours after lunch.  The hallucinations have continued.  They tended to be seeing something that was there, but seeing it to be something it wasn’t. 

Barb came and spent the evening with Mary Ann.  Again, I ran an errand or two and then came back to the house to spend time in my office listening to music and reading a new book that I hope will have a positive impact on my physical well-being.  That is a concern for any Caregiver who needs to stay healthy to be able to continue to fulfill the responsibilities.  There simply is no room for health problems.  (As if any of us could control what does or does not happen in that regard.)

I am heading to bed early in hopes that tonight will be a better night. 

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It was only a cup of water, but it was 3:48am, and it ended up all over Mary Ann, and the bed and the floor between our beds.  The bed spread, bottom sheet and mattress pad were soaked in places. Everything needed a clean and dry replacement.

Those who are in the Caregiving Spouses of those with some form of Lewy Body Disease Yahoo Group would recognize this to be tiny on the scale of messes they have to deal with routinely.  It is just that it was one of those nights with rampant hallucinations, lots of times in need of my help throughout the night.  I had asked again and again for her just to stay in bed, since otherwise there would be no hope of sleep.  She decided to get up and get the water for herself from the bed stand.

I won’t deny feeling pretty annoyed, but I got things changed and put her back in bed.  There were additional needs increasing as we got closer to morning.  She was up early, in need of food and pills.  Needless to say, it is midday; she is napping; and I am, as usual, wide awake and sitting here at the computer (after having fed the birds, of course).

Before the troublesome night, I had thought today might be the day we could take in a movie.  It is almost 3pm and Mary Ann is still sleeping.  I asked her about the possibility of getting up when I gave her the last round of pills.  I hung around for a while talking with her about getting up, but she wasn’t ready to do so.  I am grateful to have most of last evening’s PT’s coffee refill left this morning, so I am avoiding the ugly caffeine withdrawal headache.

She finally got up around 4pm, ate lunch and began watching some television.  The hallucinations continue.  I had hoped that she would sleep them off with the long nap.  Just moments ago she fell in the bedroom but did not hurt herself.  As I was getting her up, I could see in her eyes that she was seeing someone.  She whispered that there is a man in the living room.  She insisted that I hide the coin jar on her dresser.  When I got her back into bed, she asked me to tell him to go to bed.  This morning, at one point she told me that there was someone in his bed, correcting herself quickly that is was my bde the person was in.  I wondered if it was another fleeting moment of the Capgras Delusion, thinking that I was a substitute.  By the way, that delusion was the basis for the Body Snatcher movies.

I just saw on the monitor that she was getting up.  I rushed in and she said she had something to tell Pete.  I told her that I am Pete.  I asked her if sometimes she thought I was an imposter.  She didn’t answer that clearly.  Then she talked about the people again.  She said, “Now they are eating here.”  She told me that the children were standing at the rail around the opening to the stairs to the basement.  That spot was about ten or twelve feet from the bed where we were standing.  She said the dad was in the kitchen making food.  I asked if there was a Mom, a wife.  She said that of course there was.  She did not say whether or not at that moment she could see her.  It is no wonder she has a hard time sleeping with all those people around.

Volunteer Patrice came over for a couple of hours this evening giving me a chance to run a couple of errands and begin a much needed clean up of my office.

It seems likely that we are in for another night with lots of interruptions.  I am now thinking about going over to the Hospice House Administrative office to check on the option of Mary Ann staying a night there.  They have an Adult daycare program in one building and offer rooms in the Hospice House for occasional night time care (having nothing to do with the Hospice program itself) at a reasonable (I think) cost.  If there are too many sleepless nights in a row, I will need to have an option for getting some sleep.  I will take Mary Ann along so that she can see what the rooms are like.  It is a beautiful place in a lovely setting.  As pleasant as the setting is, it may not be a workable option.  If she is not comfortable with the situation, I will not be able to sleep at home knowing she is distressed.  That would then defeat the purpose.

For now I am just hoping for a decent night’s sleep some time soon.

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.

I am not sure how many there were sitting on the ice at the lake, but certainly fifteen or more.  It is a huge lake, so I could barely see some of them.  There were adults and juveniles in many stages of development.  They sat on the lake waiting for frozen fish to work their way close enough to the surface of the ice that they could get to them.

Many of them flew from one place to another.  At one point a beautiful black and white adult American Eagle flew right overhead, low enough so that I could practically count the feathers without using the binoculars.  Later a juvenile did the same thing.  The mottled brown and cream were bright and beautiful in the sunshine.

The Eagles interacted with one another.  They would land near each other.  At one point there were a cluster of four, two adults and two juveniles hopping toward each other, then flying a few feet away.  A while later there were two standing on the ice so close to one another that they were touching.  One was a juvenile and one an adult.  It looked like a parent and child (same size as parent) leaning on one another, both looking straight ahead in the same direction.  I suppose it could have been a May-December thing.  I don’t know enough about eagles’ behavior to be able to make an intelligent guess.

The most spectacular sight was of two eagles flying into each other, almost grasping talons in mid-air.  At one point one of them did a complete sideways somersault, a roll. “Contrary to traditional belief, eagles don’t copulate in the air but rather on a branch near their nest or on the ground.”  That is a quotation from a website named Birdhouses101.

It took a while for me to settle after the excitement of what I was seeing.  Once settled, I spent some time reading an article from Weavings, the Spirituality Journal that I read.  It was the second reading of the same article.  Many of the articles in the journal are a little like fruit juice concentrate.  They need some time thinking, some contemplation, to get the best and most satisfying flavor from them.

The third week in the online Ignatian Retreat I have been doing has provided Scripture passages and articles on a theme that has been reinforced by the online Prayers and exercises provided by Fr. Ed Hayes (through the National Catholic Reporter website).  The theme is appreciating God’s imprint on and activity in all dimensions of life, especially the natural environment, a little like the movie Avatar, but without crossing into Pantheism.  I haven’t yet seen the movie, but would like to see it on the big screen rather than waiting for the DVD to come out.

The time at the lake provided the perfect setting for contemplation of God’s presence.  It is a theme that provides respite and strength for the day to day demands.

Mary Ann had a reasonably good day.  Elaine spent time this morning with her while I headed to the lake.  Elaine always reads more pages in the book they have been working on for months.  When Elaine reads, she immerses herself completely in the story and the characters come to life.

Lunch was a grilled sandwich, none too exciting, but then the football playoffs were on television today. Mary Ann enjoys watching professional football.  When we went to our first Chief’s game in Kansas City, she wondered what the ten yard business was about.  Not too many years later she reached the point that she knew the names of most of the quarterbacks on the various teams.  She would yell out loud when the games were on.  She has become much more subdued, but sitll enjoys watching the games.

There have been some mild hallucinations today.  She only had a short nap on the couch today.  I prefer that she nap in her bed, since it is outfitted to deal with disposables leaking.  I put a chux on the couch for her to lie on just in case.

She is in bed now, but I don’t know how the night will go — whether or not it will be filled with raccoons and people and any other unwanted guests remains to be seen. Actually, I went in to see what her movements were about.  There were children again.  Then she looked over my shoulder as I was helping her to the commode and said, “What am I going to do with all those sponges?”  That is a new one.  I checked again and she was checking the children who she said had found their spots.  She asked for some tapioca.  As i was feeding the last of it to her, she jumped because the raccoon was nibbling her foot.  Then the bedding was moving.  I saw no movement.  I am anxious for the new order of Seroquel to come so that I can titrate from 100mg to 150mg per day.  Then we will see if there is any reduction in the hallucinations.

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“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.

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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.