It was a very bizarre world she was in until she finally rested her head on the little table later in the morning.  She described in great detail a birthday party that was thrown for her — never happened.  She talked to her Dad.  She reported to Bath Aide Zandra that her brother from Wyoming made a surprise visit.  She was constantly seeing and talking with people, describing things that were happening right in front of her as I was there completely confused by the stream of apparitions.  She had to get up early to finish the Blueberry French Toast egg casserole that was not there.  She came back to that a number of times.  It is very good.  I may try to make it soon just so that we both can enjoy it.

As always, I was completely at my wits end throughout the night and morning.  The hallucinations were a constant presence when I was with her all day long.  This morning, she was in hyper-mode.  She was talking clearly and distinctly, walking pretty much on her own. I just held on to the gait belt for dear life as she moved quickly from one place to another either with clear plans in her mind for what she would do or no idea why she had gone there.  It is such an odd combination of dementia and energetic activity and strong communication skills that there is no way I can describe it adequately.  All I can say that from my perspective it is utterly maddening.

Gratefully, Friend Jeanne came over and gave us a break from one another for at least a couple of hours.  This evening Friend and Volunteer Shari was with her so that there was another break. I just sat and watched the sunset, half dozing.  I read a little from the book of devotional observations on the St. Patrick’s Breastplate prayer.  Both the sunset rest and the reading helped some, but my brain is just very tired.

I plan to wait at least until Wednesday to phone the Doctor’s office to report on the impact of the increase in Seroquel.  As I said last night, the vagaries of Mary Ann’s symptoms makes it almost impossible to discern what has to do with that change and what is just another of the usual vacillations.  The med is supposed to reduce hallucinations.  The last time we increased it, the first three days of the increase had more and stronger hallucinations than ever.  That is what has been happening today.  I want to give this change at least three days just in case it becomes effective after that, as happened with the last increase.

This continues to be one of the tougher times in the years we have been battling the disease.  I expect tonight to be a difficult one.  I will know for sure in a few hours.

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Mary Ann started getting fired up for a hallucination day this morning.  She was up a cluster of times, especially toward morning.  We got up sometime between 6am and 7am.  I got Mary Ann dressed and fed, then washed her hair in preparation for the company.  She was doing a lot of hallucinating, not as intense as some days, but on her way to unmanageable.

After a time, she lay her head down on the table.  When we headed in for a bathroom trip, she sort of wilted and ceased to be able to do much to help in transferring from the wheel chair to the toilet stool.  I was concerned that I might not be able to get her back to the chair.  She was not completely limp, so I was able to get her into the chair and then into bed.  This was a bit of a new twist on her condition, although I tend for forget quickly what we have been through before unless it was particularly traumatic.  Forgetfulness is sometimes a blessing!

I was concerned that she might be down and unable to respond for the entire visit today.  As it turned out, after an hour or so of sleep, I was able to get her up in time for their arrival.  She did pretty well for most of the three hour visit.  Trudy is a good friend to Mary Ann and has been for decades.  She kept Mary Ann engaged as much as possible.  Coleman and Trudy are both valued friends to me also.  We seem to have a lot of interests in common (especially Grandchildren).

Mary Ann did lay her head down for a while, but perked up again until they had to get on the road.  While yesterday Mary Ann fainted every time she stood up, today she almost never fainted.  The hallucinations were not apparent during the time of the visit, but they have fired up again this evening.  Mary Ann decided she wanted a bowl of cereal since she only had an applesauce snack since lunch and chocolate cake, plus rhubarb pie later in the afternoon.  While at the table eating the cereal, she jumped and described an exciting sight.  She saw the flowering plant on the deck just outside the window, move and throw quills, as in a porcupine.  She has said more than once that she slept through the day.  Each time I reminded her about Coleman and Trudy’s visit — which she always then remembered. It is hard to imagine that there will be much sleeping tonight.  She just went back to bed, but I don’t expect her to stay there for long.

She has had the additional half tablet of Seroquel the last two mornings.  She takes one and a half pills at night.  The purpose of the Seroquel is to diminish the hallucinations.  It has the side effects of causing drowsiness and sometimes low blood pressure dizziness.  The last two days have not yet produced any behavior that can definitely be connected with the additional Seroquel.  Mary Ann’s dramatically varied manifestations of her stable of diseases, makes it very difficult to discern what might be the result of a med change unless there are either new symptoms or a very obvious change in symptoms that goes on for a number of days.

The complex and difficult task of figuring what to prescribe, how much to give and when to give it, makes me wonder how it is possible for a physician to make such a call in ten or fifteen minutes at an office visit.  I will wait another couple of days before calling the doctor’s office with a report on the impact of the new dosage of Seroquel.

Here eyes are still open.  I wonder what the night will be like?

I put the CD’s on and invited Mary Ann to dance.  As I have admitted before, I don’t dance.  I can, however, sway.  She laughed at me, as usual.  We stood for a minute or two of swaying/dancing before she fainted from the Orthostatic Hypotension (drop in blood pressure when standing) that has come from a combination of medicines and a compromised Autonomic Nervous System (due to both the Parkinson’s and the Parkinson’s Dementia).

Today did not include the option of going out anywhere since Mary Ann fainted every time she stood up — that is every time!  There was some intestinal activity, which always included a cluster of fainting spells.  I just hung close to her at all times.  If she just stood up in front of her chair to stretch her legs, she fell back into the chair and was out for a time.

In spite of that, the day went better than I thought it might.  She was awake most of the time.  She did not seem to be hallucinating very much at all.  She got good, long phone calls from both of the kids.  Daughter Lisa’s crew sang happy birthday, and both of the girls (5 and 7) had stories to tell about what was going on with them.  Mary Ann was able to respond a little to both Son Micah and Lisa.

My Sister, Gayle, phoned and sang happy birthday also, so Mary Ann got lots of attention.  There have been lots and lots of cards.  She now has a bank envelop with the words “for ice cream only” filled with a total of $60 in cash.  The bank teller wrote that note on the envelop in accord with the note on a $50 check.  I believe there will also be some Graeter’s ice cream from Louisville delivered when Lisa and her crew come to visit in June. That has to rank as one of the best in the world of ice cream.

Don and Edie came over again to deliver some flowers and visit for a few minutes.  Volunteer Coordinator Mary had brought over a bouquet yesterday.  Friend Jeanne called, widhed Mary Ann happy birthday, and arranged for a visit on Monday.

After eating a slice of Glory Days Pizza for lunch (left over), we each had a piece of rhubarb pie (Volunteer Coordinator Mary made it a couple of days ago using Mary Ann’s recipe).  Mary Ann’s piece, of course, had a couple of scoops of ice cream on it.

Mary Ann dozed for a while with her head down on the little table in front of her, but was awake most of the time.  The big band music was on for much of the time.  Later she lucked out and found a couple of episodes of “House,” followed by an NCIS marathon.  We went through birthday cards.  She was not as alert yesterday when I read some to her, so we went through them again.  She was much more alert today.

The wildlife was entertaining to both of us at various times.  Three very colorful Baltimore orioles were in and out of view for much of the day.  It was rainy outside, but only occasional sprinkles.

After some more leftovers for supper, we each had a big piece of the three layer melt-in-your mouth chocolate cake frosted with thick layers of whipped cream and coconut frosting.  I made a pot of Sumatra Badak Rhino Blue Tawar coffee from PT’s. It is a moderately dark roast that fit my taste perfectly.  Mary Ann is not much for the strong coffees that I enjoy.  She prefers Pepsi.

Today, I included the additional half tablet of Seroquel in the morning cluster of pills.  The Neurologist is suggesting we try that addition to see if it might help reduce the hallucinations.  It can cause her to sleep more of the time and increase the fainting, but the fainting had already started before she took her meds and long before the medicine could have gotten into her blood stream. She didn’t sleep as much as usual during the day today.  It is way too soon to draw any conclusions on the effect the increase in Seroquel might have.  Today she seemed to have minimal trouble with hallucinations and more fainting, but the medicine may have had no part in those characteristics of the day.

Mary Ann slept well and for a long time each of the last two nights.  I also have had two full nights of sleep.  I have absolutely no clue whether tonight will be a night of sleep or a night of hallucinations/delusions/dreams mixed with reality, up and down with no sleep for either of us.  I do know which I would prefer.

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When she got up at 2pm, after getting dressed, eating something and taking pills, she sat for a while.  After lying in bed so long, the Orthostatic Hypotension (fainting due to low blood pressure when standing) was really creating problems.  She had some healthy intestinal production, but fainted numerous times before, after and during that activity.

Every time she stood up she fainted.  Even so, she kept standing up again and again.  Eventually, she was fainting so much, I put her back into bed.  She slept for another hour or two.

This morning, shades for the sun room were installed (three of the four — one needed to be remade to fit better).  The activity did not bother Mary Ann.  Also, while she was sleeping, Volunteer Coordinator Mary, brought over some flowers for Mary Ann’s birthday tomorrow.  Mary arranged the flowers and put them in a vase.  At the same time that was happening, Landscaper Sheila, who had smelled leaking gas at the meter when she was working outside the last couple of days, phoned the Gas company to check for a leak.  The truck arrived and the Gas Service Worker checked and found a leak that will need a substantial repair. He put some tape on it for a temporary repair until the full repair is done in a couple of weeks. A new meter will be put in also.

Of course the new landscaping will be torn up and a Forsythia bush removed in the process.  Sheila will prepare the area and replant the bush when the time comes.

After Mary Ann’s nap, she got up in time to enjoy the meal that friends and former parishioners Don and Edie brought over at about 6pm.  Don was the cook.  It was a great meal.  Mary Ann was very tired and struggled to eat, even with my help.

During the afternoon, former parishioners John and Marilyn phoned and then brought over Marilyn’s traditional gift for Mary Ann.  It is a three layer chocolate cake with thick fluffy white frosting covered with coconut.  Because of the frosting it needs to be refrigerated.  The cake looks as if it would be almost too rich to eat, especially with frosting so thick.  On the contrary, it is very light, melting into wonderful waves of chocolaty gentle sweetness.

After the cake, Mary Ann seemed to drift into what looked almost as if she had fainted.  While Don and Edie cleaned up the kitchen, I got Mary Ann into bed for another nap.   Don and Edie and I talked for quite a while.  After they left, I got Mary Ann up to get her pajamas on and take her pills.  She is now back in bed.

The Parkinson’s Specialist’s Nurse and I connected this morning.  She reported that Dr. Pahwa suggests trying an additional half of a Seroquel pill in the morning in addition to her evening dose.  We are to try that for just a few days and call in to let him know what is happening.  The last time we increased the Seroquel, the dementia got very much worse for three days before there was the hoped for improvement.  From the way the suggestion was reported, I inferred that there is not much hope this will help and maybe some fear that the dementia will worsen — if that’s possible.

Last night because Mary Ann slept so well, I was able to get a full night’s sleep.  It sure felt good.  I am feeling greedy enough tonight to hope and pray for another night of sleep.  Whether or not that hope is realized and prayer answered remains to be seen.

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[Too tired to edit -- publishing as is.]

As usual, gratefully, she did lay her head on the table and settle there after getting dressed, breakfast and pills — hallucinating all the while.  The position she was in looked so uncomfortable.  After a time she decided that she did want to go in and lie down.

During her rest time, I finished moving all the firniture out of the way for today’s carpet cleaning.  I also managed to get hold of the Neurologist’s office.  The call was a little frustrating since the Nurse saw that we had not followed one of the Doctor’s suggestions in the chart from our last visit.  She was not aware that in that visit, the Doctor indicated that the suggestion to get a Psychiatric Evaluation of Mary Ann, was only an option if we were not satisfied with Dr. Pahwa’s choice of medications.  Since I am very aware that Dr. Pahwa is one of the best Parkinson’s Specialists around, I opted not to try to find someone less knowledgable in the area to suggest other drugs.  The other meds for hallucinations are more dangerous and less effective for the kind of dementia Mary Ann has.  Dr. Pahwa confirmed that he was only making the suggestion to provide a sort of second opinion.

The Nurse seemed quite frustrated that I had not done what the chart indicated had been one of the suggestion for us.  The chart listed the suggestions, but not the result of our conversation at the appointment.  She did agree to talk to the Neurologist.  Since we were away from the house on account of the carpet cleaning, I missed the return call.  Somehow I also missed the call on my cell phone.

I got Mary Ann up to get in the car and head out when the carpet cleaner came.  We met former parishioner Jay for lunch at McFarland’s Restaurant, where Mary Ann feels especially secure — and the food is good.  There are lots of folks our age and older who frequent the Restaurant.

We had a great conversation.  Mary Ann was really struggling to stay alert and functional.  Even with my help she wasn’t able to eat very much.  We sure seem to have lost a lot of ground.  It continues to appear that it is not a temporary decline, but a new location on the ride.

After lunch, we tried to go home since Mary Ann was so tired.  The carpet was still too wet for us to go into the house.  We went over to the church from which I retired to use the bathroom, since I thought it would be quiet enough that I could take her into the women’s rest room without fear of interruption.

Then I broke down and took her for ice cream to Baskin & Robbins.  It was uncomfortable, but I will get over that.  The ice cream was good.

The next stop did not go well.  I drove to the grocery store.  We went in and gathered a number of items.  When we were about two thirds of the way done with our list, Mary Ann said she had to go to the bathroom for serious business.  They have no family bathrooms, but very active Men’s and Women’s rooms.  Since it was major business, I could not just ask someone to take her in.

It would have taken too long to try to check out with what we had before leaving to go home and use our well-equpped bathroom.  I took the cart to the Service Desk, told someone there that I would be back for it, and we high-tailed it home.  Things went fine there, but afterward, Mary Ann had to lie down and nap.  There was no way I could get her back to the store.  With the potential for bathroom needs and a store because of construction almost fifteen minutes away, I could not leave her there while I drove back, got the rest of our items, checked out and drove home.

In our world, nothing is easy.  Volunteer Coordinator Mary came to our rescue.  She has helped with groceries before and offered to help whenever she could.  I called her and asked her for help.  She immediately offered to pick up the groceries, stopping by the house to get the coupons and the rest of the list.  She quickly called back to offer to stay with Mary Ann while I went back and finished shopping if that would work better for me.  That is the option I chose.  It turned what had felt very frustrating and distressing into a few moments away to in a relaxed way get the task completed. At the store they had been thoughtful enough to put in a cooler the items in the cart that needed to be refrigerated.

When I returned, I thought Mary Ann would still be sleeping, and just need to be changed for bed to complete the night.  She wanted to get up for a while.  She needed something to eat.  All through the time she she was up and then eating she was lacing her reality into the reality visible to me.  Since going to bed, she has been hallucinating some.  There is not clear evidence yet as to whether this will be a night of sleep or of multiple interruptions by the hallucination/delusions and dreams mixed with reality.

One thing is certain.  I need to get to bed soon so that I at lease have a chance of getting some sleep.

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Mary Ann slept through until Bath Aide Zandra came to do her morning prep.  That allowed me the full time in the group conversation without needing to leave to do a support task for Mary Ann.

By the time Zandra left, Landcaper Sheila and a helper came to so some major work around the street side, as well as the entrance area at the side of the house continuing to the back deck.  She is constructing it to provide a rich palette of color and texture with an eye toward winter scape elements.  Since we are not in a position to get out much, we are bringing a stimulating environment into view from every window of the house.  There are plants that will invite butterflies and hummingbirds in the mix, many that bloom all season long, some that mark the movement of the seasons, some that strengthen the sense of seclusion in the waterfall area.

Having something very engaging drawing attention that used different psychic muscles from those tapped in the caregiving tasks seemed to help.  Mary Ann was not experiencing the same level of intensity in that has made the last couple of days so difficult, and she rested in her chair without hopping up as much as has been the recent pattern.  I was able to go out and check on the project, enjoying the prospect of seeing all the flowers blooming in months to come.

Mary Ann rode with me to get Glory Days Pizza slices for lunch.  Just before Volunteer Coordinator Mary came to stay with Mary Ann for two and a half hours, she lay down for a nap.  While Mary was at the house, I was able to spend time over a cup of coffee with friend and former parishioner John in conversation.  It was helpful just to have the time away, as well as having a listening ear to bend.  John does a good job of listening, and giving appropriate feedback without presuming to be able to fix the situation.

While I was gone, Mary made that rhubarb pie that Mary Ann and I both love very much (mentioned in an earlier post).  It was great to enjoy a piece of that pie after a supper of Lasagna from the freezer that Daughter Lisa had prepared one of the last times she visited, along with fresh asparagus from the country market. Mary brought a beef, potatoes and veggie dinner that we can heat up tomorrow.

Sometime in midday, we received a reminder phone call that our annual carpet cleaning is tomorrow.  We had gotten a reminder post card a week ago, so it should have been no surprise.  Since my mind has been so dominated by the escalating frustration of reaching and passing for a time the ability to handle the intensity of Mary Ann’s needs, it just didn’t register that I needed to get the furniture out of the house, and figure out where to go while the carpets are cleaned and then given time to dry.  In fact I had accepted the offer of a very caring former parishioner who has treated us with great respect, to bring us coffee tomorrow afternoon for a visit.

Gratefully, Jay was willing to meet us for lunch at McFarland’s Restaurant, a place where Mary Ann feels very comfortable.  That alternative also provided a place to be during the carpet cleaning.  We still need to figure out where to go for a while as they dry.  The issue is always finding an accessible place with a bathroom situation that allows me to help Mary Ann.

While I am certainly not at my best at the moment in terms of stamina, I was able this evening to get much of the furniture moved out of the way (downstairs or into the garage).  I am hoping that the one who comes to clean will be willing to help move a table a few feet off the carpet and into the sun room area.

There has been no progress today on contacting the Neurologist about the possibility of increasing dosage of the medication that is supposed to reduce hallucinations (while unfortunately increasing the daytime sleeping and the vulnerability to fainting spells).  The day was active enough that I just didn’t get it done.  I have not yet received a report from the Hospice Social Worker about the possibility of some paid help to cover a morning or two in the week.  Those two things are important since they offer the possibility of actually making a difference in our situation.

I hesitate to say it for fear things will change any minute, but so far tonight, Mary Ann has just had a few needs for turning in bed and using the commode.  She has been in bed for about two and a half hours.  It has been storming loudly off and on for most of that time.  The storms are expected to last almost until morning.  Right now they are noisy but not dangerous. They don’t seem to be bothering her.

As I finished that last paragraph, she started moving.  When I went in, she wanted to get up and go home.  Then I offered her a snack, since she had eaten very little for supper other than the pie.  As I fed her she moved into a very odd sort of mode that made it very difficult to feed her.  She was bouncing as if she was starting to get up.  She did that a couple of times when I had the spoon at her mouth.  At a couple of points it seemed as if she was partially fainting.  After I finally got the last of the applesauce into her mouth, she started bouncing as if trying to get up.  When I asked what she was going to do she didn’t know. I laid her back down and she began talking about everyone getting up and leaving.

Clearly, I spoke too soon.  Judging from her current state of mind, it is reasonable to expect another difficult night.  It is just not getting any better.  I keep thinking we will make it through this round of hallucinating and have a couple of days of sleep with minimal hallucinating interspersed with lucidity.  She is moving back into a pretty intense mode of hallucinations and delusions.  I just hope I can keep her in bed as much as possible, again hoping and praying that she will just fall asleep for the rest of the night.  It is now about 12:15am.

I had better finish this and get bed on the outside chance that there will be some sleeping fitted in before morning.

It just never stopped.  When I saw 3am come around, I hoped that then she might finally let go and sleep, as has happened in the past.  It just never stopped.  I suppose on occasion I slept as long as fifteen minutes when there was that much time between new encounters with her world.

Finally, not long after 6am, I simply could no longer convince her to stay in bed.  I gave up trying.  I turned off the alarm that was set for 7:45am to get her ready for her Bible Study and tried to figure out how to get her to stay secure while I showered.  I knew she wouldn’t stay put in her chair, but I got all her basic needs met, the television going, water nearby and just took the shower.

She was, of course on the floor when I came out.  I checked to see if she was hurt.  She was not.  I put a pillow under her head and let her stay there while I finished.  That way I knew she would be safe and secure.  She said she was comfortable.

Then I got her dressed and fed and ready to go to her Tuesday morning group.  Since she got up so early, she was ready about an hour early.  She continued to hallucinate, but finally lay her head on the little table in front of her chair.  It is hard to describe the sense of relief that came with Mary Ann dozing and ceasing being driven by hallucinations and delusions and living dreams., constantly demanding my full attention.  I was able to get my own breakfast, the wash started, clean the commode, make beds and get things in the van so that I could awaken her and get her to her group on time.

I have admitted before, and I do so again, that this expression of the Parkinson’s Disease Dementia puts me in direct contact with the outer limits of my capacity to endure this Caregiving role here at home.  I am disappointed that I can’t handle it with grace and endurance.  Actually, this expression of Mary Ann’s disease puts me in contact with those outer limits from the other side of my capacity to cope.

There was a last minute bathroom trip, but we did make it to her Bible Study group. She apparently rested some but did all right at the group meeting.

After the meeting we stopped to pick up her favorite steak soup and lemon meringue pie.  I wasn’t sure she would be able to eat, since she had her head down and seemed to be dozing all the while we were in the van.  I did feed her some of the soup and pie.

As soon as that was done we had to get to appointments I had made for us with the Optometrist.  Considering the Hospice trajectory and the fact that a recent visit to an Ophthalmologist (M.D. eye doctor) had revealed that her vision problems are neurological, not mechanical, I wondered about how appropriate it was for Mary Ann to get new glasses.  I decided to ask her if she wanted the appointment so that future possibilities did not determine present action.  Whatever she wanted to do was fine with me.  When we got there, she was just too tired to keep her eyes open for an exam.  She slept with her head on her lap in the waiting room, while my eyes were examined.

My prescription had changed quite a bit in the five years since I last bought glasses.  The cataracts are just in the beginning stages.  My Dad had glaucoma, so I was interested that the eye pressure had increased — not enough to be certain it is a problem.  There was one unsettling observation.  One eye has a hint of the possibility of Macular Degeneration beginning.  I know too many who suffer much from that mostly untreatable condition to look forward to that potentiality.

We got home just in time for Hospice Nurse Emily’s weekly visit.  For her records and my need to share, I describe the last couple of days and admitted that I need help.  I asked her to help me come up with alternatives.  She said that she would call Hospice Social Worker Kristen, since she is the one with the resource information.  Emily took Mary Ann’s vitals, blood pressure at 200/108 — relevant information when considering whether to resume the medication that raises BP to help reduce the fainting spells (see yesterday’s post on our dilemma in that regard).

While Nurse Emily was taking Mary Ann’s vitals, the phone rang.  It was Hospice Social Worker Kristen asking if she could come over to do her monthly visit.  Emily had not yet phoned her.  Interesting timing.

Shortly after Emily left, Kristin arrived.  She got the full and detailed description of the last two days and our medication dilemma.  I was, of course, doing my usual opening of the verbal safety valve by which I survive.  I told her that I planned to phone the Neurologist to see whether he recommends increasing the Seroquel.  I can handle the sleeping (of which she does too much) but I cannot handle the streaming hallucinations for very long, especially when they remove the option of sleep.  The Seroquel’s purpose is to help diminish hallucinations, but it increases the sleep time.  Again, it is a matter of survival.

For her part, Kristen said she would check with a team of four who do some private pay help for other Hospice clients.  The cost per hour is significantly less than the Agency help we now use sometimes.  Because of the unpredictability of the night time needs, we talked about the possibility of one or two mornings a week on a regular basis.  I could use the time to sleep, if that is what is needed, or just get away.  Adding that to the wonderful gift of Volunteers from church who fill slots of time when they are available to do so, might help bring this task back into my range of ability to handle it.

Even at the lower rate, the cost will be challenging.  After the last couple of days, it doesn’t seem to be an option to try to continue without more help.  This evening already, Mary Ann has been hallucinating, requiring trips to the bedroom to explain again and again that it is not morning but evening, it is Tuesday, not Wednesday, there are no painters here.  As I said in last night’s post, I say again tonight, I hope at some point she wears down and goes to sleep for the rest of the night.  She may have napped enough today to gain a second wind.  I have not napped and have no second wind, or, for that matter, any of the first wind left.

It helped to talk with the Hospice folks this afternoon, as well as some of the church Staff this morning after I took Mary Ann to her group.  One thing has become apparent to me.  I do a lot of talking and blogging and meditating and celebrating the natural beauty that is now in view at our house.  Those things help me process what is going on, keep things in perspective, vent some of my feelings.  All of that is very good.  It does not, however change the harsh realities of the difficulty of this task.  None of those tools magically creates super human powers that allow me to handle whatever comes.  I am still a painfully ordinary someone, far too selfish, irritable, whining way too much, with limited stamina and strength.  It is time to figure out a way to get more help.  I am still committed to doing this here at our home.

For now, it continues to appear that tonight will be a repeat of last night.

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That is the rock.  The hard place includes two things.  One is that she has continued to faint often.  There are times during the day when it seems more likely, but it can happen any time.  They often result in a subsequent nap.  That is the second thing of the two things in the hard place.  She has slept during much of the day many days.

The medication of choice to control hallucinations is Seroquel.  The most prominent side effect is that it causes drowsiness and can result in lots of sleeping, day or night.  Another concern the Neurologist mentioned is that Seroquel increases the vulnerability to fainting due to low blood pressure (orthostatic hypotension).  By increasing the dosage of Seroquel, the other problems worsen.   If we reduce the Seroquel, the hallucinations would be likely to increase.

As I have mentioned many times before, the medicine that is used to keep blood pressure up, reducing the fainting keeps her blood pressure at a dangerously high level.  Today in the Dermatologist’s office her BP was 208/93.  That is without taking the med to raise her BP so that she faints less often.

We turn one way and face up against the rock.  When we turn the other way, we face up against the hard place. It is a difficult spot in which to remain for very long without beginning to tire of it.

Because of the unique character of Parkinson’s Disease Dementia/Lewy Body Dementia, there is a sensitivity to sedative type medications that precludes the use of any but a very few.  The choices are very limited.  The problem with trying other meds for hallucinations to see if they will work is that the sensitivity of LBD and PDD results in losses that cannot be regained.  We can’t just try things for a while.  Mary Ann is now on the medications that are most recommended for treating the problems caused by PDD/LBD.

This spot between a rock and a hard place seems to be the place we will be living for the indefinite future.  We choose to live in an intentional state of denial, but it is not easy to maintain it.  While I always hope that the latest sign of decline is transitory and better times will return, it is beginning to seem that the better times are long gone.  The Neurologist of someone in the online LBD spouses group told her that some time her husband would have one of his fainting spells and just not come back. Sometimes having a support system that includes lots of information about the disease one is dealing with includes too much information.  Some things are better not to know.

I have rushed to the bedroom a dozen or two times as I have been writing the last few paragraphs.  Mary Ann is hallucinating and pretty adversarial and angry that I don’t respond appropriately to things that simply make sense to me or have no corporeal existence outside of Mary Ann’s mind.  I can only wait until, hopefully, she just wears out and goes to sleep.  She has been in and out of fainting most of the times I have gone to the bedroom to get her back into bed.  In fact she has been vocalizing some while fainting, sometimes acting in a belligerent way while in that state.

This morning I knew problems were beginning.  She was up a number of times very early, and when she could no longer stay in bed, she had that intensity that signals the beginning of the streaming hallucinations.  There was some fainting early on, but Bath Aide Zandra didn’t have problems with her.  After Zandra left, I got her breakfast and pills.  She sat in her chair for a while in pop up mode, but soon put her head down.  Finally, she wanted to lie down.

After lying down, I got her up to go to the Dermatologist appointment she has been asking about for a couple of weeks, often thinking it was the day of the appointment. She was concerned about some bumps she felt on her head.  There were no problems discovered.  The nurse asked Mary Ann what she was doing at one point.  Mary Ann said she was separating her fingers.  It was the thread or gold chain hallucination.

I just headed back to the bedroom again.  She asked if they served breakfast and lunch.  I confirmed that she thought it was a motel.  I tried to convince her that she was in her bedroom.  She responded angrily that I kept moving her from house to house.  I asked if she wanted some applesauce.  She said yes.  Then while I was getting it, she got up, walked around the end of the bed to the area between the beds and fell.  She did not hurt herself, but that spot is one from which it is almost impossible to extricate her.  The only alternative was to lift her straight up and on to the bed.  My back reminded me just how risky that move is.  That  area between the beds is too small to get the lift in and manage to put the sling around her.

I got her around to the side of the bed and started feeding her the applesauce.  She fainted, completely falling into me since I was sitting next to her.  Even when finally she was awake and ready to eat again, I had to hold her up and try to keep her hand away from her mouth so that I could get the applesauce in.  Sometimes when I am feeding her, she moves her hand to her mouth as if she is feeding herself.  I have to try to figure out how to get the food around her hand and into her mouth.  She gets irritated when I push her hand out of the way to get to her mouth.

I finally got her back into bed.  I am sure she will be up again soon.  Needless to say, this has not been one of our better days!  Here we go again — again demanding lifting and shifting and adjusting her in bed. Each time I have gone to help her there has been the same need for the physically demanding help.  This is another one of those times I am wondering how long I will last.

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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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While she slept this morning, I filled a couple of feeders and then sat inside watching the activity outside on the deck, at the bird feeders and in the waterfall area.  The experience reminded me of pictures of folks going through an aquarium that has an underwater tunnel allowing them to watch the fish from inside their environment.  I sat in my little box (made of ticky-tacky??) as an observer, while they were foraging out in the open.

It was better than watching a huge high definition television screen.  There was a new character who joined the cast this morning.  It took me a few minutes to be sure what that flash of color was.  It was a Baltimore Oriole in search of food.  I had hung a Hummingbird feeder, an Oriole feeder and I had put out a dish of grape jelly, with little hope of actually enticing an Oriole to come by and spend some time.

The Oriole seemed a little confused.  He fluttered back and forth toward the glass of the sun room.  He moved to one of bushes next to a side window in the dining room and flew at that for a little.  Then he fluttered over to the hummingbird feeder and hung pretty much upside down, apparently managing to get some of the sugar water.

Then he moved over to the rail just below the Oriole feeder and not far from the dish of jelly.  Surprisingly, he just did not manage to spot the jelly, just two feet from where he was standing.  He fluttered up to the Oriole feeder and did not drink any of the orange sugar water there, but found the little pockets of jelly around the edge of the feeder.  By the way, I am using the word “flutter” very intentionally.  It was not just flying he was doing, it was what looked like very haphazard fluttering of his wings, allowing him to fly in place while trying to figure out where and how to land.

After Mary Ann finally got up, she ate a normal breakfast (she had not eaten supper last evening).  She was very subdued — almost completely non-verbal.  After eating, she agreed to head out in the car to do a few things.

Of course the first stop was PT’s for a cup of coffee, a single origin Ethiopian this time.  Then we went to a grocery that has a large seasonal garden center set up on their parking lot.  There we found a favorite hanging plant with small deep blue blossoms (sorry, no tag on the plant with its name).  Rather than hanging the plant, I put it right outside the lower window next to the sliding glass door to the deck.  That is the spot the Robin used for staging his attacks on his reflection in that glass panel.  The two spots on the deck on either side of the sliding glass door have provided the bonus of serving as perfect display areas for enjoying flowering plants from inside and outside.

After getting the plant (for Mother’s Day), we went to the farm produce store north of town to get asparagus.  We usually get three or four pounds each time we go since the season is fairly short.  The only other item they had that was from their own fields was Rhubarb.  I couldn’t resist it.  Mary Ann’s Rhubarb pie is so good that given the choice between a piece of that pie and a Turtle Sundae from G’s, I would eat the pie.  Those of you who know me well understand just how good that pie must be. The problem with getting the Rhubarb is that there is a long way between a handful of Rhubarb stalks and a piece of that pie.  Whether that long way will be traversed any time soon remains to be seen.

By the time we were back in town, Mary Ann was ready to have lunch.  I had only had a banana for breakfast, so I was anxious to eat.  We went to her favorite, Bobo’s, for a cheeseburger and fries.  I had the more healthful fish sandwich, deep fried and slathered with tartar sauce. Mary Ann was able to handle the burger and fries with little help.

After lunch I stopped at the Wild Bird store to pick up a couple of things and get some lessons on Oriole and Hummingbird feeding.  The message was, throw out the old sugar water and make new.  That is what I did when we got home.

Mary Ann had started dozing in the car, so as soon as we got home, I got her in bed to nap.

While she was sleeping and after I finished redoing the feeders, I sat and watched the big screen nature channel provided by the sun room glass.  One thing that I had noted when doing the feeders was that something had been at the grape jelly.  After a time of watching, the Oriole returned and headed directly for the jelly.  I hope he brings friends.

Mary Ann has slept straight through supper (I tried getting her up, but it didn’t work).  At about 9pm I got her changed into her pajamas and and the nighttime pills taken.  She still did not want to eat.  She finally stirred a little about fifteen minutes ago (about 10:40pm).  I sat her up and asked if she wanted something to eat.  She chose a single serving container of applesauce.  It turned out to be a bit of a new experience.  As I put the second spoonful in her mouth, she seemed to resist.  I went a few feet to get a nearby napkin.  When I turned back around, she had fainted and was completely out, gratefully having fallen to the side, still on the bed.

I got her back up into a sitting position after she came around and continued to feed her the applesauce.  She fainted again.  This time I was sitting next to her on the downhill side, so I was able to hold her up.  After she came around again, I resumed feeding her the applesauce.  With only a spoonful left she went out again.  This time I got her down to the pillow, moved her around into a comfortable position, where she is at the moment.

I am concerned that the daytime sleeping a third day in a row is fueling a switch between day and night for her, sleeping in the daytime and agitated at night with hallucinations, delusions and dreams confused with reality.  I am not sure what to do about it, since when she sleeps during the day, it is not just a light sleep from which she can be kept awake by urging activity.  She just shuts off.  She can’t stay awake.  The converse is also true.  When she is awake at night, she just can’t make herself sleep and not dream or hallucinate or have delusional thoughts.

I am very grateful for the pleasure and the calming that comes with sitting and watching the activity outside those panels of glass in the sunroom.  It does not seem to get boring since there is always the hope of some new cast member joining the regulars, the Mallards, Mourning Doves, Grackles, Robins, Blue Jays, Cardinals, House Sparrows, House Finches, Cowbirds and Fox Squirrels.  The Possum only comes at night, so I have not enjoyed watching him, just dumping the Possum pellets out of the ground feeder in the morning.

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My point:  It was not a good night last night.  It continued as it began.  That description is in last night’s post. Mary Ann was actively hallucinating and mixing bizarre dreams with hallucinations until 5am.  Then she settled for two hours, and at 7am was up and at it again.  This mornign she announced that she hated the place she slept last night.

I think it was after I had gotten her breakfast and pills, at this point I am not sure exactly when it happened.  She insisted on getting shoes on.  I put on some moccasins, thinking her feet were just cold.  Then she wanted her coat on.  She often sits with her jacket on when the house is cool and she has just gotten up.  This sounded different.  I asked where she was going.  She said she (we) were going out to the car and to the movies.  I reminded her that she was still in her pajama’s and that Hospice Aide Sonya would be coming in an hour and a half.  I didn’t think to mention that the theaters were not open in the morning anyway.  She was not happy with me for frustrating her plans. Moments later, as I moved her into her spot in the living room, in a matter of fact way, she asked the little girl if she wanted to go with us to the movie.  I am guessing that the little girl was Granddaughter Ashlyn, since she often sees her and talks to her.

There is no way I can even begin to describe the various living dreams she had last night. For one thing, I don’t remember them.  Most of the time, they just don’t connect with anything that makes enough sense to me to hang on to the memory.  Secondly, there were too many of them, each unrelated to the last, as they came every few minutes.  Some times there would be a repeat, for example, one of the first things she said this morning was, did I know we were broken into last night?  (See last night’s post.)  At 4am she asked for a Nitro pill to deal with the pain that the two earlier Tums had not eliminated.  The Nitro pill relieved the pain.  I suspect it was still esophagus pain.  If I understand correctly, on occasion Nitro pills have been used to quiet reflux spasms.

Yes, I would term last night, a night from Hell.  It is hard to imagine how frightening it must be for Mary Ann to find herself in distressing circumstances for so many hours with no sense of what time it is or where she is.  It is, of course, terribly difficult to go through as a Caregiver, helpless to say or do anything to make a difference, or provide any comfort.  I remind her endlessly that she is safe in her own bed and there are no people other than the two of us here.  That never sinks in for long.

It was good today for Mary Ann to have the reality of a morning regimen with Sonya.  Then friend Jeanne came over at 11am to be with Mary Ann again for a few hours.  Volunteer Scheduler, Mary also came over and ended up staying the whole time with Jeanne and Mary Ann.

I spent time away from the house doing errands.  I had enough to keep me busy until mid-afternoon, when I brought home Blizzards for everyone from Dairy Queen.

As far as I know, Mary Ann dozed with her head down on her little table most of the time I was gone, plus some time napping in bed.  She did get up to eat lunch.  After Jeanne and Mary left, Mary Ann dozed with her head on the table, and then wanted to lie down.  She has had no supper.  She just got up long enough to have a little single serving tapioca, and then she changed into pajamas, took her pills and is now in bed.

She has been up once to use the commode.  Since she slept so much today, we might have another difficult night tonight.  I did not get any napping in today, so I certainly hope that she sleeps tonight.

Even though it is chilly tonight (heading for the upper 30′s by morning), I sat on the deck for about an hour.  I put a coat on and brought out an afghan to put over my legs so that I would be comfortable.  A little more devotional reading and some time just tuning in to the setting and the moment, helped settle my spirit.  This is not getting any easier on either of us.

…she just got up asking me to put the things away in the baby blanket.  Indications are that we may have another night like last night.  My hopes for a restful night are not likely to be realized.

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I told her that the police had not been here, that she must have been dreaming, that there had been no break-in, that I was here the whole time, and that the tree is still hanging in the living room.  After we talked a while, she wanted to go out to the living room to see the tree.  We did so.

After getting her in bed again, I folded the chair and brought the monitor in from the deck and came back to the computer.  She started moving again.  This time she said she didn’t want to go to the hospital.  I asked her if something was wrong that she thought she might need to go to the hospital.  She said “they” told her to get dressed.  Then she said, “You know we were broken into.”

She decided to use the commode, but when she got on it, she didn’t need to use it.  She started talking in that fast sort of jibberish, but I recognized the word “organization.”  I repeated the word and she confirmed that is what she said, but there was nothing connected to the word that either of us could identify.  When I lifted her from the commode to transfer her back into the bed, she fainted.  After swinging her on to the bed, I eased her into a lying position.  I had to try to get her pajama bottoms back up when she came around and was awake again.  She wanted to go out into the living room to see what was going on.  We went out there and she fainted again.

I asked her if she wanted to sit in her chair in front of the television.  I thought that just maybe the television and living room setting might help her hang on to reality until she was tired enough to fall asleep and get through the REM cycle (where the dreams occur) into deeper sleep.  Before I could get her to her spot, she sort of fell asleep in her chair.  It was apparent that she would not be able to sit up on her own.

I got her back to bed.  Since then she had another dream that I was lying on top of someone.  All of this has happened in the span of about a half hour.  At this rate it will be an impossible night.  At the moment she is lying in bed, facing the television watching her very favorite program “House.”  My hope is that she will remain engaged in it for a while, just giving me a break so that I can finish this post.

Last night was better than the night before, but not wonderful.  She got up early and I set her up in front of the televsion so that I could get a little more sleep.  After I got showered and dressed. we took care of her pills, breakfast, got her dressed.  During that time, she seemed reasonably connected.  We talked more about yesterday morning’s angry accusation.  She seemed to have gotten past it, at least at that moment.

Shortly after breakfast, she asked to lie down.  She slept for three hours or so.  During that time friend Tim came by with a vase of irises for her.  Tim is husband to Volunteer Jan.  When Mary Ann woke up, she had her usual, fairly small lunch.  During the last of the time she was eating, she needed to use the bathroom.  After we returned to the table, I got her into the dining room chair to eat the last of the chips and have some Pepsi.  Then she just sort of switched off.  It was almost as if she had fainted but not completely.

… break to respond to Mary Ann.  She now thinks she is in the hospital, wondering what they are going to do to her.  Watching “House” may not be helping, but she was concerned about the hospital before that program came on.  She wants the television left on.

…back to lunch time today.  Since she just switched off, I took her back to bed.  She slept a few more hours.  She got up long enough for supper, but ate very little.  Neither did she want to go out for the Blizzard of the Month at Dairy Queen (Buster Bar Blizzard, fudge and peanuts mixed in ice cream), nor did she even take the offer of ice cream from the freezer.  Very soon, she wanted to go to bed again.  She was quiet for about an hour before the living dreams fired up.

Since she has slept so much today, she may very well be up and active most of the night.  I dread that thought. (I just made a trip to help her to the commode.)

On the positive side, I got some devotional reading done this afternoon as I sat on the deck.  Again this evening I had some more quiet time to relax on the deck.  Much of the time I was out there, the Mallard ducks were sitting in the waterfall.  At one point there was a little drama as the two all of a sudden high tailed it off one way as fast as they could waddle.  Soon there was another Drake coming from the opposite direction and heading after them.  The next time I went out there was a hen by herself in the waterfall.  By the way, the ducks, especially the hens, are almost completely invisible when they are in the waterfall and the greenery and rocks right around it.  Even though they are no more than twenty-five feet away and I know they are there, I need the binoculars to differentiate the hen from the background.

The Bluejays and Grackles are constantly busy, with doves and the occasional Cardinal, Robin or Sparrow joining in the activity when I am out there.  There is not much variety of birds, but the ones that are there are entertaining.  Again, there was a great breeze growing into wind at various times.  The sky was bright and blue with a few wispy clouds. The trees are almost in full leaf.  The green of the leaves and the newly mown grass has that spring vibrance.

…there she goes again.  Just a Tums.

At the moment, as I write, the window in my office is open so that I can enjoy the sound of the wind, the cool air coming in the window and the fairly mild episodes of thunder and lightning.  So far very little if any rain has fallen. The volume of the thunder is increasing, as is the number of lightning flashes.

…another Tums.  Television off.

I will finish editing and get to bed in hopes that it will help that I am in the room with her — I doubt it.

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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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While there are some obvious stress producers in our current situation, I suspect the problem would be the same no matter what the source of the stress.  The threat of many thousands of out of pocket dental expenses is a strong motivation to use the night guard regularly.

Today was a better day for Mary Ann.  She slept very well last night.  She was alert and participated in her Tuesday morning group.  Volunteer Scheduler Mary took us out to Boss Hawg’s Barbecue for lunch in honor of Mary Ann’s (5/15) and my (4/14) birthdays.  What a treat!  Mary Ann ate lots.  She needed help after a while, but she stuck with it until the food was almost all gone.

Hospice Nurse Emily came by this afternoon.  Mary Ann’s vitals were all fine, but her blood pressure was low this time, 108/64.  Emily commented that she never knows where Mary Ann’s BP will be when she takes it.  Mary Ann is always an interesting and entertaining patient to any health professional who takes care of her.  She is never boring!  I can’t remember what exactly it was she said when getting up from the toilet stool once today, but it was one of her smart aleck comments that brought laughter from both of us.

I talked with the Hospice Nurse about my considering returning the Midodrine to the meds to see if our quality of life might return to something closer to what we had six months ago when Mary Ann took it daily.  It is the med that raises her BP to levels that are not good in the long run.  Since quality is more important to both of us than quantity of days it seems like a reasonable option.  It is within the range of options acceptable to the Cardiologist.  When I talked with Mary Ann about it later on in the day, she said that she didn’t really want to change anything.  She feels it is all working well now.  Looking at it from my direction, it doesn’t seem that it is working well.  On the other hand, it is her body into which the meds are going.  For now, I won’t press the issue.

There were a couple of deck times today and another chapter in the book on St. Patrick’s morning prayer.  This chapter, “Christ Before Me” as well as the one I read yesterday, “Christ Behind Me” have both been thought provoking and comforting.  Maybe more deck time and devotional reading will help reduce the teeth clenching.

Parish Nurse Margaret stopped by with some fresh asparagus from her garden, which I added to the bratwurst and sweet potato fries we had for supper.

All in all, today the scales balanced in favor of clarity and good communication.  There were some times of confusion, but they were less prominent than the last couple of days.  Mary Ann has been especially restless tonight.  It is very late and she still seems to be awake and moving around.  While that does not bode well for tomorrow, tomorrow will speak for itself.

This time she responded that she wanted to go to the bathroom.  Deb took her while I was still there.  When Mary Ann came back to the Living Room, Deb said she had been looking for her diamond.  I pointed out that it was on her finger.  She popped up again needing to do something she tried to describe but it just didn’t compute.  Then moments later she popped up again and just stood there needing to do something but not sure what.  She fainted again. Deb, of course, was right there with her hand on the gait belt (Deb is a Nurse).

She popped up again. I asked Mary Ann if I could bring her something when I was out.  That is our code for getting her ice cream.  She said, “garbage bags.”  I asked her what she meant, what garbage bags.  She got angry with me for not knowing what she was talking about.  I asked her if she would sit down for Deb since she had been fainting.  She reacted angrily and sat down.  There was nothing in the air, any former conversation, anything in the immediate or recent circumstances having anything to do with garbage or garbage bags.  She responded as if I was just being difficult on purpose about the obvious matter of garbage bags.

Recently, the hallucination/delusion/dream  mixed with reality has been a constant undercurrent, surfacing at various times.  There have been days when she has had streaming confusion.  While the confusion can come and go in moments, tonight’s move from the mild dementia in the background to blatant and intense problems happened in a more dramatic way than I remember happening before.  Rarely has anyone else seen the dementia on the surface with this level of intensity.

After I left, Deb said there were a number of trips to the bathroom, with some action in the last one.  Then she settled in front of the television.  I asked Mary Ann as I was putting her to bed what she was referring to when she got angry with me about the garbage bags.  She wasn’t sure but she thought it had something to do with our Granddaughter, Chloe.  A couple of years ago we bought garbage bags from Chloe as part of an annual school fund raiser.  To my knowledge there has been no conversation in our household about those garbage bags since then.  At the moment, as I am writing, Mary Ann seems settled in bed.

Last night did not go well at all, so I expected today to have some problems with the dementia. She ate reasonably well.  Bath Aide Zandra came to give her a shower.  Mary Ann was in and out a bit.  She asked me to let the dog in.  There is no dog.  She talked about the tapeworm she is convinced that she has.  She said she sees it in the bed at night.  While she was in and out, it was not overly intense.

She was tired, understandably after last night.  There was a lot of time with her head on the little table in front of her.  She opted for Chinese from the grocery for lunch. Hospice Chaplain Ed came over after lunch for a while.  He asked Mary Ann how she was doing, asked me how I was doing, but most of the time it was the usual conversation that included our various ministry experiences.  He was interested in the Concert we had at church since he is a musician, plays the piano.  Mary Ann had her head down and dozed through most of what was an exceedingly boring conversation to her.

She then napped in the bed for about an hour and a half.  I got in some deck time while she was sleeping.  Tonight while Deb stayed with Mary Ann, I did a little shopping at Penney’s to replace some holey underclothes (it’s a pastor thing) and get a long-sleeved white shirt.  Yesterday’s Concert revealed that I had none that fit me.  Who needs a white shirt when retired?  Levi’s and work shirts (euphemism for hang around the house doing nothing shirts) are all that are needed.  Then I went over to my spot with the best view in town and sat for an hour or so.  I read from Weavings, the Spirituality Journal that comes to the house quarterly.  I watched about as beautiful a sunset as a person could hope to see.  In that spot I can hear birds and frogs and wind in the trees against the backdrop of tires on the Interstate a half mile away.

The deck time and sunset time was helpful.  Lately it has just been a little tougher for both of us to deal with the vagaries of each day’s leg in our journey — nothing dramatic, no one thing in particular.  Having said that, a prayer popped into my mind.  In our tradition there are formal corporate prayers (sometimes called Collects) that are often used in worship.  Many of them have a long and rich history.  There is one used in a worship service called Evening Prayer (also in other services) that is a favorite of mine. Here it is, copied from The Lutheran Book of Worship, p.153:

“Lord God, you have called your servants to ventures of which we cannot see the ending by paths as yet untrodden, through perils unknown, Give us faith to go out with good courage, not knowing where we go, but only that your hand is leading us and your love supporting us through Jesus Christ our Lord.  Amen.”

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The concert seemed to go well.  It was tough logistically to pull off since there was a huge choir made up of folks from five congregations.  There were numbers of instrumentalists playing at different times depending on the style of music.  There was classical music and contemporary music, liturgical dance, poetry, drama; there were soloists, ensembles, a hand bell choir, pieces with organ accompaniment and piano accompaniment and combinations of any or all of the above.  It would have been tough to sit through that concert without finding something to like. It struck me what a complex organism the event was with each of us having our little piece that when put together with all the others could provide something of such magnitude.  There were no stars, no one to single out, other than Young, the project director who had the vision and put it all together.

I enjoyed being in the setting, talking and thinking and listening to and making music.  One of the choir directors from another congregation sang in the trio.  He and I had a chance to talk music off and on.  It is a world in which I have spent much quality time in earlier decades.  I find it engrossing and energizing, as well as spiritually uplifting.

Yesterday I had a chance to talk with our eleven year old Granddaughter whose choir concert was also this afternoon, resulting in my missing it.  She seemed okay with my missing her concert.  She told me about some of the songs they would be singing.  Our Son said he would try to get some of the concert on video for us.  I feel better having made that connection.

Mary Ann and I both slept well last night.  I had plenty of time to get her ready this morning, dressed, fed two meals, hair washed.  There was lots of fainting again, raising some concern about how things would go if she tried attending the concert.  When Home Instead Caregiver Debbie came, we just headed over to church.  Mary Ann seemed to do fine.  The concert was almost two hours long, plus a reception afterward. Lots of people made a point of greeting Mary Ann.  Now that there is an awareness that she is enrolled in a Hospice Program, folks are probably less sure what to expect and more surprised to see her appearing to be doing reasonably well.

Last evening and this evening, after Mary Ann went to bed, I was able to spend almost an hour on the deck, enjoying the sound of the waterfall, watching clouds and birds, as dusk arrived and the lights in the waterfall shone at the base of each level, sparkling in the sheets of water coming over the rocks. As a result it is now getting late.  I will hope for another good night’s sleep tonight, but, of course, whether or not that happens is not mine to decide.

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Yesterday, Mary Ann was again very tired all day long.  The hallucinations/delusions/dreams mixed with reality continue. Yesterday morning she asked me to check on the towels.  I confirmed that she meant the towels for the people she is convinced are living downstairs.  She admits that she thinks I am lying when I say that they are not here at the house.  I offered to take her downstairs.  I think the bed is not made but has the clean sheets folded on it.  The problem is, not only would it be almost impossible at this point to get her down and up the stairs by myself, but she would probably just conclude that they cleared out for the moment just to fool her.

We did not get out yesterday except to make a quick circuit to get my coffee and a take-out luncheon Lasagna from Olive Garden for Mary Ann.  Later in the day she opted not to go out for ice cream but eat what we have from the store here at the house.

I don’t know if this is actually a decline or just temporary, but the confusion becoming a routine part of each day, increased fatigue, and the reluctance to go out is a little unsettling.  Maybe it is still the Urinary Tract Infection.  She is done with the ten days of anti-biotics.  We will be getting a specimen for the lab when she gets up to see if it is actually gone.

…Mary Ann is up now.  She got up at about 11:15am.  She ate a usual breakfast and then sat for a while, pretty much dozing most of the time.  Understandably she did not want to lie back down even though her head was hanging.

When I asked about lunch, she said she did want to go out.  I was apprehensive since she appeared so tired, but it seemed worth a try just to get both of us out of the house.  When she stood up to put on a light jacket, she ended up having a major fainting spell.  After she came back around, she still wanted to go out.  She, of course, has little awareness of the fainting.  I rolled her to the door to the garage and she walked down the steps as usual (she handles steps better than flat surfaces) into the garage.  Before I could get her into the car, she had another major fainting spell.  I have four folding chairs lining the garage wall along her side of the car, so that one is always in reach.  I grabbed one and got her in it before she went down to the floor.  I have put the colorful foam playroom squares along her side of the van so that if she does fall, the damage will be minimized.

I finally got her into the car, and we made our way to Perkins.  Since she was in the wheelchair except when transferring from the car and into the chair in the restaurant, she did not faint during that outing.  She managed to eat a few pieces of pancake on her own, but then she allowed me to help her eat more after ceasing to be able to get them speared and into her mouth.

When I got her out of the car back at the house, she had another major fainting spell.  After she was awake and able to stay seated in the folding chair by herself, I prepared the portable ramp into the house and got the transfer chair.  That way i was able to get her into the house.  As always, she needed a trip to the bathroom.  She fainted again there, but this time it was not a major outage.  By the way, when I refer to a fainting spell as a major one, it means after jerking and stiffening for a few moments, she goes limp.  Then she remains out for a minute or two (rarely it is many minutes up to a record fifteen).  During that time she is snoring as if having a spell of apnea, sort of gasping for breath, and saliva comes out of her mouth (my sleeve usually gets wet since I put my arm across her chest to keep her from falling out of the chair).   Gratefully, she is completely unaware of all of that and remembers nothing of it.  She sometimes seems to think I am making all of that up, that she does not actually faint.  Since she has no conscious awareness of the fainting spells, she has no natural reticence to getting up and heading out no matter how many times she has fainted.

When Hospice Nurse Emily came to pick up the specimen for the UTI lab test, I asked her to take Mary Ann’s vital signs since Mary Ann had appeared to have labored breathing and admitted to having some difficulty with her breathing.  Her vitals were fine.  The blood pressure reading was 158/92.  That reading came after there had been some fainting spells and before we headed out for lunch, experiencing a number of major spells.  That reading would be high for anyone under normal circumstances.

Here is my dilemma.  Do I add back into her medication regimen the Midodrine that raises her blood pressure all the time.  When she is on the medication, it is as high as 220/120 in the mornings and goes even  higher sometimes when measured at doctor’s appointments.  Many months ago, when she was taking a full therapeutic dose of Midodrine, we were able to do much more in the way of traveling, eating out, participating in activities.  We have long ago decided that the quality of our time is more important than the length of it.

As I write, I would like to be attending the wedding of the daughter of a family of which we think very highly.  Her Mom was on the Staff at the church from which I retired.  I have enjoyed their kids and value them as friends as well as former parishioners.  If that is not enough, one of the Pastors doing the wedding is a young man whom I watched grow at that church, and had the privilege of Ordaining into the ministry not long ago.  Lot’s of folks whom I came to know and love during the twelve and a half years as part of their lives will be gathered there.  I take some comfort in the fact that I am at the moment doing exactly what Katie and Jacob are  promising to do, what I promised to do over forty-four years ago.

Tomorrow is the day of the concert in which I will sing as part of a trio in a larger choral piece.  It would probably be a good idea to get a good night’s sleep tonight.  Mary Ann is in bed and appears to be sleeping at the moment.  Here is hoping that she sleeps well throughout the night.

There was another complex delusion that she talked about in a very matter of fact voice a little later in the morning.  I can’t remember the content, just that it was surprisingly complicated and detailed, with no relationship to any bit or piece of the visible reality in which we live.

It was probably a good thing that there was a Volunteer scheduled while I have the periodic lunch with jimmy, a retired casket salesman who is enjoyable to talk with.  It was a good thing for Mary Ann since Volunteer Jacki brought her violin and serenaded Mary Ann while she was eating her lunch.

I finally got to the grocery after lunch today.  It would have been tough to go another day without more of a couple of things (most importantly, Mary Ann’s disposables).

Mary Ann had been asking to get to the dentist’s office for a cleaning since we missed the last appointment.  This afternoon was her appointment.  As always, the cleaning produces lots of bleeding. There are two reasons for that.  One is that she is taking Plavix and Aspirin, thinning her blood. The other is that I don’t do enough to care for her teeth since she has lost the ability to brush on her own.  The Aides do a little to help that problem, but it would be good if I would stop feeling guilty about not doing mouth care for Mary Ann and just do it.  I have put a Chux pad on her pillow tonight so that any bleeding will not get on the sheet or pillow.

This evening Volunteer Edie came to stay with Mary Ann while I went to another choir practice in preparation for Sunday’s Concert.  I enjoy singing, I made the commitment and will keep it, but I am very ambivalent about it for a number of reasons.  The central reason is that I will miss Granddaughter Chloe’s choir concert in Kansas City.  She is 11 years old and sings in a children’s choir sponsored by the University of Missouri, Kansas City [UMKC].  This is one of two concerts in the year.  Last year our Kids included a combination Mother’s Day/Birthday celebration by taking us and the other Grandparents out for a nice meal/dessert afterward.  We are missing out on all of that because I didn’t put the date on our calendar, and I committed to sing in the concert here before I received an email reminding us of the date. I hate disappointing Chloe as well as our Son Micah and Daughter-in-Law, Becky.

Another reason for my ambivalence is that the more I enjoy the singing in the concert, the more I remember what I am missing in my life at the moment.  Singing takes my mind off everything else.  I am completely immersed in getting the notes and rhythms right, being exactly on pitch, interpreting the phrases appropriately, blending with the other singers.  There is no room for awareness of anything else when that is going on.

When someone you love has to be away for a long time, while you long to have a visit from them, a short visit from them also brings with it the pain of knowing you will have to say good-bye again in a day or two, going through the grieving all over again when they leave.  It is almost easier just not to see them until they can come home and stay.  That is the something of how it feels when I do something that brings me joy and satisfaction, something that has no place in my life at the moment.

With enough effort, I could probably figure out the logistics of singing in some choir or vocal ensemble more regularly. There’s the rub — effort.  Serving as the 24/7 Primary Caregiver for someone who truly needs your help day and night, does not leave the stamina necessary to work out those logistics.  The will and the energy to do what needs to be done to get away at scheduled times is simply no longer there.  The role I have here is big enough to take all that I have to give.  Even at that, Mary Ann could/should receive better care (e.g. oral hygiene).

Sunday will include a mass of conflicting feelings.  While I want her to get out and enjoy the music, there will be complex transportation and timing issues if Mary Ann decides she would rather attend the concert than stay at the house with the person assigned from the Agency (a person Mary Ann knows and likes); there will be the $80-$90 it will cost to cover that care so that I can sing in the concert; there will be disappointment at missing Granddaughter Chloe’s concert and how she and her parents will feel about it; there will be frustration that I am not reading music or singing as well as in the past; there will be exhilaration in doing the singing, joy in hearing and participating in making the music that will reverberate in that building (Lutherans can really sing).  There will be the Spiritual uplift that comes with the organ music and instrumentalists and the singers in the choir, a roomful of people of faith in the congregation expressing that faith in full voice.

Right now it is getting late and all that is too much to think about.  For the moment, I just hope Mary Ann sleeps well tonight, and me too.

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There were no Volunteers scheduled today, so unlike many Wednesdays, the option to go out on my own was not available.  Mary Ann was tired today and napped at times that kept us here.  We still haven’t made that trip to the grocery I have been trying to get in for a number of days.  Since food has been brought to us recently, we are eating well.  We are on the last package of Mary Ann’s pads (disposable underwear), so tomorrow will have to include a trip to the store.

This morning began with the Spiritual formation group that meets here.  If those folks were not willing or able to come here, I would simply have no Spiritual Formation Group experience regularly. It is both garbage day and lawn maintenance day on Wednesdays in our subdivision.  We have recently incorporated the garbage truck sounds into our spirituality as a metaphor for ridding ourselves of unwanted garbage in our lives — letting go of things that just bog us down and clog our spiritual arteries.

As I was setting up the deck in anticipation of the arrival of the group members, there was an aerial attack on the pair of Mallards in the back yard by another pair.  There was much squawking as the dive bombing hen chased off and flew after the hen already on the tarmac.  The same thing happened with the drakes, with the addition of their fly by almost clipping my ear.

The lawn crew provided weed-eating next to the deck as we had the concluding prayer.  I am sure that we will come up with some sort of metaphoric understanding of to the mowing and weed eating that will incorporate those sights and sounds into our Spiritual Formation.

Again, during the group time Bath Aide Zandra came to the house to provide friendship and help as Mary Ann with through her morning regimen.

By the time the Group was done, Landscaping Tech Sheila had arrived and begun working on our disheveled garden areas.  It is at this point that another venture into bringing beauty into our lives is beginning.  Sheila has presented and then adapted a plan intended to provide more beautiful surroundings at the side and front of the house.  Her original proposal was elegant and well-planned.  Mary Ann and I redirected the project.

Shortly after moving in we had added a berm in the space between our town home and the one next to us in a spot that was in full view when standing at the sink in the kitchen.  The first plan would have returned that spot to sod.  After thinking about it for a while, I realized that we were more concerned about what we see from inside the house than what people see when looking at it from the street.  Now that I am at the sink an inordinate amount of time each day, I am especially in need of having color and activity and growth and change to stimulate my visual cortex.  We can’t get to lots of beautiful places away from the house, so we are bringing them to the house.  That is what all the changes at the back of the house were about.

Stacey came by later today to take the final measurements for the sun room blinds for privacy at night.  That project continues.  Sheila is doing some work in a small back area at the side of the deck to fill out the setting.  The leaves are now out on the trees in behind and beside the waterfall and in the neighbors’ back yards.  The area is now almost completely green and secluded.

Mary Ann’s day was not her best.  She fainted quite a bit this morning and ended up back in bed for at least a couple of hours.  At a late lunch there were a couple of falls without damage to Mary Ann, but our relationship was stressed some in response to them.  From her perspective, she was just doing what she did automatically before the disease took its toll.  From my perspective, she was making choices (twice within minutes of one another) that unnecessarily complicated our lives with substantial clean up and the physical demands of getting her off the floor.

I spent the rest of the time she has been awake sitting a very few feet from her, ready to jump each time she stood up.  Bringing activity and stimulation into our immediate environment helps especially on days like today when even stepping outside is limited.

Hallucinations have continued at various levels of intensity.  We seem to be having less and less of the good, lucid times.  A few minutes ago when I saw her moving in bed, I went in to help her turn so that she is facing the opposite direction.  She said that she guessed we were at the first table.  There were, of course, people here, but she wasn’t sure if they were tables for playing cards or what.

I am not sure what way we are swinging at the moment.  I don’t know if there will be lots of daytime sleeping tomorrow, or much sleeping tonight,. I don’t know if there will be some calm and lucidity tomorrow or hyperactive delusion/hallucination/dreaming going on.  I will find out.

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Quiz: Are You Heading for Caregiver Burnout? By Paula Spencer, Caring.com senior editor

Caregiving can bring many positives into your life — but it’s also hard work, physically and emotionally. If you don’t take enough self-care to replenish yourself, then caregiver stress, anxiety, and depression can build.

And that puts you on the path for caregiver burnout, a syndrome of mental, emotional, and physical depletion. “Caregiving requires a certain amount of selflessness, but it’s important for caregivers to know their limits,” says Caring.com senior medical editor Ken Robbins, a geriatric psychiatrist at the University of Wisconsin who’s also board certified in internal medicine. “Caregivers can become so focused on the person they’re assisting that they neglect their own needs.”

Caregiver burnout interferes with your ability to function. Burnout also raises your risk of chronic depression and other mental and physical ailments, from hypertension and flu to diabetes, stroke, or even premature death. Caregiver burnout is also a leading cause of nursing home placement, when run-down caregivers become too depleted to manage caregiving demands.

What’s your caregiver burnout index? Answer the following 12 questions, add up your score (A = 4 points, B = 3 points, C = 2 points, D = 1 point), and learn lifesaving strategies for managing the unique stress of caregiving.

1. How often do you get a good night’s sleep (seven or more hours)? a. Every day  b. Often  c. Sometimes  d. Seldom or never

2. How often do you keep up with leisure activities that you enjoyed before caregiving? a. Every day  b. Often  c. Sometimes  d. Seldom or never

3. How often do you feel irritable or lose your temper with others? a. Seldom or never  b. Sometimes   c. Often   d. Every day

4. How often do you feel happy? a. Every day  b. Often  c. Sometimes  d. Seldom or never

5. How often do you find it difficult to concentrate? a. Seldom or never  b. Sometimes  c. Often  d. Every day

6. How often do you need a cigarette(s) or more than two cups of coffee to make it through the day? a. Seldom or never  b. Sometimes  c. Often  d. Every day

7. How often do you lack the energy to cook, clean, and take care of everyday basics? a. Seldom or never  b. Sometimes  c. Often  d. Every day

8. How often do you feel hopeless about the future? a. Seldom or never  b. Sometimes  c. Often  d. Every day

9. How often are you able to relax without the use of alcohol or prescription sedatives? a. Every day  b. Often  c. Sometimes  d. Seldom or never

10. How often do you feel overwhelmed by all you have to do? a. Seldom or never  b. Sometimes  c. Often  d. Every day

11. How often has someone criticized your caregiving or suggested you’re burning out? a. Seldom or never  b. Sometimes  c. Often  d. Every day

12. How often do you feel that someone is looking after or caring for you? a. Every day  b. Often  c. Sometimes  d. Seldom or never

How did you score?

This self-test isn’t a scientific or diagnostic measure; it’s meant to help you identify whether your stress level warrants taking steps toward better protecting yourself.

Add up your score. Each A = 4 points, B = 3 points, C = 2 points, D = 1 point.

48-42: Keeping your cool (low burnout risk)

Your heart and head are both in the right place, and your stress-busting reservoirs are full, which helps you to give with grace and good humor. That said, caregiver stress often creeps up without a caregiver realizing it. Protecting your healthful habits is paramount.

What to do: Keep yourself well fueled for caring by making time for yourself every day — at minimum, aim for several five-minute pick-me-ups for caregiver stress. If you’re in a relationship, know that a healthy marriage or other close relationship can be a source of strength; learn how caregiving couples can make it work.

30-41: Feverish (elevated burnout risk)

You’re likely managing caregiver stress reasonably well but falling into a common caregiver trap: Letting yourself sink lower on the daily priority list than is healthy for you. Everyone has an occasional crazy-busy day, but too many of them results in chronic stress — which erodes well-being and places you at risk for depression, colds, and other illnesses.

What to do: Protect your time for self-care by learning seven ways to find more “me” time. On days when you’re feeling stressed, try these five ten-minute pick-me-ups.

18-29: Too hot to handle (high burnout risk)

Your stress level is probably sky-high. You may already be experiencing symptoms of anxiety, depression, compromised immunity, and physical exhaustion that can lead to or complicate chronic diseases such as hypertension, diabetes, heart disease, and chronic depression. It’s critical that you take steps immediately to lower your stress level, ideally through a combination of better self-care, a shared workload, and outlets for your complicated emotions, including talk therapy and support groups.

What to do: In addition to the suggestions in the sections above, learn the five real reasons you’re stressed and how to tame them. Look into respite care options — they’re an important way to give yourself the break you need.

12-17: Toast (already burned out)

It’s a wonder — and a blessing — that you were able to find and take this quiz. You’re running on empty, or is it more like barely running? Although you want to do your best for the person you’re caring for, realize that your own health is at stake — and if you don’t look out for Number One, you won’t be able to help the person or persons in your care.

What to do: You need immediate help. Learn how to tell the difference between the normal stress of caregiving and depression and consult with someone you trust — a doctor, clergyperson, counselor, or therapist, for counseling — and seek out medical assistance. At minimum, you need a physical checkup. You may also benefit from other therapies or from a break from caregiving that’s as short-term as a vacation or as permanent as a relocation of the person in your care.

After she settled, Mary Ann slept well last night, but remained tired today.  I got up in time to get her ready for her Tuesday morning Bible Study.  Even though we remained on course and had plenty of time to get there, she chose not to go today.  I still don’t fully understand why, except that she seemed to be tired all day long. I asked if she meant that she didn’t want to attend any more, but she said it was only today that she didn’t feel like going. She really values the group and seldom misses.

She ate well at all three meals.  She napped for a couple of hours at the most.  She went to bed at a normal time for her.  One of the Hospice Nurses stopped by for the weekly visit.  I was pleased to report that Mary Ann weighed in at 115.5, another pound heavier.  We have been trying to regain some of the weight she lost in recent months.  Since Mary Ann will finish the anti-biotic for her UTI tomorrow, I asked about doing another urine test to be sure this is not a chronic infection.  The nurse said the usual, wait until symptoms occur.  I responded with the challenge that Mary Ann presents no symptoms that differentiate from already ocurring symptoms of her chronic conditions.  I hope the Hospice Doctor will authorize another test some time in the near future to be sure the problem is not a recurring one.  This is another of those times in which the Caregiver has to track medical issues carefully rather than giving away responsibility to anyone else, medical professional or otherwise.

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The veggies went into the oven first at 425 degrees for 30 minutes.  Then the huge boneless pork roast covered in a mustard and herb glaze was placed in the center of the pan with the veggies and that pan was put returned to the oven for another forty-five minutes.  Before that would be done, the spinach dish went into the oven.  At the end of the 45 minutes the roast came out and the veggies went back in for another fifteen minutes as the roast was put in a dish and covered to rest for fifteen minutes before slicing.  During that time the spinach finished cooking and the fresh asparagus she also brought was steamed.

Roast pork, roasted vegetables , a hot spinach and cheese dish, asparagus, a fancy layered fruit Jello and lemon bars all provided a sumptuous feast in our little place tonight.  Had we realized just what magnificent food would be in such quantity, you would all have been invited.  We will have good food for days to come, and I will not have to cook!!!

Mary Ann struggled today to stay alert.  She slept well last night, a very good thing.  She didn’t get up until Bath Aide Zandra came, and she remained very tired during the shower, hair washing and getting dressed routine.  Breakfast was a little more difficult than usual for her to handle.  After some fainting, she ended up back in bed for a about an hour and a half.

After she got up, we headed out to run a couple of errands and bring back some lunch for her.  I most often do leftovers.  For the afternoon, she was again somewhat vulnerable to mild confusion and hallucinations.  I needed to stay close.

As we were finishing supper, Volunteer Tamara returned at the usual evening Volunteer time.  She even did the after dinner clean up as I helped Mary Ann wtih the last of her supper.  That was a wonderful gift.  Then I was able to have some time away this evening (Lowe’s and Barnes and Noble).

Mary Ann has been in bed now for a while, but she is really struggling to get settled. I certainly hope she is able to rest, for both our sakes.

Our Daughter, Lisa, phoned this morning while Mary Ann was with Zandra.  She called to work out plans for a couple of visits to our place, one just after the girls get out of school for the summer and just before they start back toward the end of the summer.  That will give Mary Ann a couple of focal points to keep her interest and attention as the months go by.  The Grandchildren always put things into a healthy perspective, keeping us from seeing our journey only in terms of the two of us.

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An old saying about a snowball’s chance in Hell comes to mind as the caption to that picture.  Since we attend the Evening Service at the church from which I retired, and since the tradition of Volunteers spending time with Mary Ann on Sunday morning still continues to a certain extent, I have opted to use Sunday morning as a mini-retreat time.

Most often I head up to the lake to just sit in the van and read, walk, meditate, watch for birds and other wildlife, and just spend time in the moment, experiencing whatever it brings.

This morning it brought a very chilly and very strong wind.  I opened the window on the van, covered myself with a jacket and just celebrated the power and the sound of the wind.  Last night was a difficult one.  Mary Ann was up at least four to five times an hour until almost 4am.  Gratefully, at least she slept the next four hours.

I was glad that a Volunteer was scheduled this morning.  Volunteer Jan and her husband, Tim, are in our time in life, so we have lots in common.  Jan does a treatment on her finger nails that Mary Ann appreciates. They just enjoy talking.

As soon as Jan came, I headed for the lake.  When I was passing through some fields after the turn off on the way to the dam area, a juvenile American Bald Eagle and an American Crow took off from on of those fields not far from the van as I passed by.  I suspect that the two of them had had some sort of disagreement that landed them there.

Just as I was driving off after a couple of hours there, an Adult American Bald Eagle treated me to a fly over, then circled for a couple of minutes.  In between the two Eagle encounters, I did a lot of devotional reading.  I have needed as much grounding as I could find the last day or so.  The three or four different articles from journal and online Spiritual Formation sources helped draw me back to a better place.  They were all thoughtful and very well-written.  Each helped reframe reality in terms of something that does not depend on external circumstances to create health and well-being.  There was nothing there that I don’t already know.  It is a matter of bringing the truth into a more central place from which it can generate renewal. I was also refreshed by Pastor Jim’s message at the Service tonight.

After a substantial time with the reading and meditation, a car came blasting by me in the parking lot and landed in the corner of the lot.  Two young men jumped out and started unloading cloth bags and containers and equipment and spread it all around the car and in the nearby grass.  It didn’t take long to figure out what was going on.  It probably took a half hour from arriving in the lot to heading into the water.  Only one of the two actually kiteboarded.  He went back and forth a number of times right by the shore.  He was not out on the water for as long a time as they spent getting the equipment ready and putting on all the paraphernalia.

We had a good meal after returning home, Lisa’s meatloaf, baked potatoes and asparagus.  Even though she had been up so much last night, Mary Ann never took a nap today.  She just refused to do so.  She didn’t really even nap with her head down on the table.  The fare on the television was no better than yesterday.  She was up and down quite a bit.  I just hung close to her.

The Evening Service got us out and with people for a bit.  There was a stop at Sheridan’s for Concretes (chocolate with pecans) to take home and eat.  I haven’t yet been able to bring myself to head into Baskin & Robbins after the nasty treatment the last time we were in (see post from April 15).  When we are in the mood for the flavors of ice cream that we favor there, I will not let my anger interfere with the pleasure of enjoying a couple of scoops.  Life is short.

Mary Ann has gone to bed and appears to be sleeping.  I am counting on nothing, however.  One sleepless night does not guarantee that the next one will be a restful one.  Tomorrow evening Volunteer Tamara came by late today to pick up some dishes so that she can bring us a meal tomorrow to put in the oven for supper.  We are looking forward to that treat.

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A television report on the news last night must have found a spot in her mind.  The Phelps family blight on Topeka was in the news since an estranged son was in town on a book promotion talking about his difficult childhood before getting away and moving out of town.  Mary Ann asked about one of the Phelps’s talking with me in another room.  She said she had to arouse me from being sort of hypnotized.

She was not in the intense mode that sometimes comes.  I suspect that may be coming next in the cycle.  She was fairly calm, but still getting up often, unsure why or where she wanted to go or what she wanted to do.

Meals were somewhat confusing.  The spatial problems made her insistence on feeding herself pretty tough for me to deal with.  Food was ending up in lots of places, the spoon digging in spots where there was no food to be found. I was not very patient with her today.  She finally did allow me to help her eat the last of her lunch.

Mary Ann was not ready to head out in the car, nor was she interested in taking a nap.  Sometimes she sat with her head down, sometimes not.  The television needed to be on.  Everything that was showing, at least that she would tolerate, seemed to sort of suck the life out of me.  I could hardly stand to be in the room.  I did a lot of pacing.

I have to admit that it was not a good day for me either.  I had a bit of the feeling of a trapped animal, no alternative within reach with enough draw to grab my attention.  I read emails a bit, did some posting to Quicken.  Reading a book simply does not work for me when there are multiple times attention must return to my primary responsibility.  Some people are good at switching into a deep focus quickly when doing tasks. It is not easy for me to do so. If I do get engrossed in something too deeply, I am afraid I will not be there when needed.

At about 5:30pm, just minutes after she had decided to put shoes on so that we could do my errands, Mary Ann decided that she needed a nap.  The good news was that I was able to spend time on the deck reading some devotional material and just experiencing the moment and the environment. I had the video monitor nearby so that I could check on Mary Ann regularly without having to go in the house every few minutes. The bad news is that she did not get supper and the late nap may result in more awake time during the night.  A short time ago I got her up to change into her pajamas, gave her the bed time meds and a container of applesauce. At the moment, she seems to be sleeping.

I am going to try to find the right music and devotional material now to see if I can continue the restoration of peace begun on the deck.  Some days are just harder than others.

Not too long after breakfast, Hospice Aide Sonya came to do Mary Ann’s shower and hair.  It was almost comical to hear Sonya describe it.  Mary Ann had a couple of monumental deposits to make during Sonya’s time with her.  Sonya described in great detail the nature of the deposits.  Her description reminded me of the latest round of Subway commercials.  I will leave the rest to your imagination.  I was grateful on a couple of counts.  One, Sonya got to share the joy of waste management duty, sparing me the task.  Two, it was a much needed basic bodily function that will help Mary Ann function better and feel better.

After that, we watched television together for a while.  I made trips to the computer to read emails.  I also got started on a couple of loads of wash.  Mary Ann ate a pretty substantial lunch, then we headed out in the car.  The local Asparagus is coming on, so we headed to Meier’s market to pick up a few pounds.  I practically live on it when the locally grown crop is available.

After that we headed to Flowers by Bill.  Daughter-in-law Becky made a deal with me, trading the benefit of my cell phone on their account for me getting Mary Ann fresh flowers periodically.  This is the second time I have done it, and both times I have been surprised at the spectacular bouquets I have received.  I have gone in each time and told them what I am doing.  I have asked for whatever they can give me for ten dollars.  Each time they have come out with an arm load of beautiful flowers.  This time there are daisy mums of many different colors (20 open blossoms), carnations (9 open blossoms), alstermaria or peruvian lilies (3 stems each with multiple blossoms on each stem), and a huge yellow rose.  The bouquet has filled the living room with color.

We made an obligatory stop at Dairy Queen, since it is still buy one Blizzard and get the second one for 25 cents week.  I guess today could be designated Flower Day.  Shortly after we got back home, Volunteer Maureen drove up.  She delivered birthday presents for Mary Ann and me.  One is a vining geranium in a hanging basket, providing color just outside our kitchen window (where I now spend an inordinate amount of time each day).  The other is a Gerber Daisy sporting lots of large yellow blossoms.  Maureen remembered that yellow flowers are a favorite of Mary Ann.  That now sits on the deck just outside a glass panel in full view of Mary Ann from her chair.

At supper time I actually made a sort of normal meal – a rarity.  I browned cut up ring sausage in olive oil with lots of onions.  Then a ton of the fresh Asparagus went into a pan to be steamed.  At the market there were some small white potatoes that the owner had kept back for the family last fall.  They had some left and offered them for sale.  I steamed them with salt, dried onions and parsley, drained the water off and covered them with butter (margarine).  I was surprised at how much of the garden flavor they had retained.  Mary Ann apparently approved since she cleaned her plate of every speck of food I put there.  That almost never happens.

After finishing the couple of loads of wash and cleaning the pots and pans from supper, I decided that if there is some sort of certification as a domestic engineer to be had, I am now qualified.

I plan to spend a little time tonight with a newly obtained book on St. Patrick’s Breastplate.  Each chapter is a reflection on one of the phrases in the prayer.  YouTube will provide sung versions of the prayer to give it fuller expression.

I will accept today as the gift of a kind of normal day that most would find boring, to be taken for granted.  To me it is a refreshing encounter with something to be cherished, never to be taken for granted but instead savored.

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I said in last night’s post that I hoped to get to bed earlier than usual.  I was in bed by 10:30pm (usual time is 12-1am.  I slept in until 8:30am and got my shower done quickly in case Mary Ann needed me.  After getting showered and dressed, since she was still sleeping and there was a quiet rain with soft rumblings of thunder in the distance, I lay back down on the bed.  I also did not get up again until 12:15pm. And people ask what it is like to be retired!!

The rest was very much needed for both of us.  Mary Ann was not so confused today, nor was she in that intense popping up mode that is so difficult for me to deal with.  The symptoms that suggested to me that I might be coming down with something seem to have subsided also.

Mary Ann ate well, only two meals due to getting up so late in the day, but substantial meals — with a large bowl of Ambrosia Salad as a snack in between the meals.  There was some much needed intestinal activity, demanding my participation.  There was some fainting that made that job more difficult, as usual.  She was able to sit up in her chair most of the time when she was in the living room.

Volunteer Deb came over to spend the evening with Mary Ann while I attended a choir rehearsal at the church from which I retired.  I was asked to sing one of the parts in a trio that is part of a larger piece to be sung by a combination of area choirs at a concert concluding a number of months of music activities.  This is the first commitment I have made in a year and a half, other than doctor appointments and that sort of thing.  Mary Ann’s needs at the last minute resulted in my being unable to honor a somewhat similar commitment a year and a half ago. At that time, I concluded that I simply could not commit to anything outside of Mary Ann’s care.

This time I have put in place coverage for Mary Ann that should assure my ability to honor the commitment.  Since my little part in the piece impacts the rest of the choir I can’t in good conscience just bail out at the last minute.  There is a paid Companion Care Aide from a Home Health Care Agency (Home Instead) who is scheduled to be with Mary Ann during the time of the concert itself.  Aide Debbie knows Mary Ann very well from having come each Sunday Morning to be with her for a year or two before I retired.

It was good to be singing again.  I struggled with my own ability to read music tonight as I sat with the choir, trying to sing along.  Singing in choirs and ensembles was the center of my school years.  I got to serve as student conductor of five choirs spread over high school and college years.   After that I sang in two Seminary choirs during those four years of graduate level schooling.  I sang in Schola Cantorum, a semi-professional choir sponsored by the American Guild of Organists for a number of years in Kansas City.  It is hard to accept struggling to read what would have come quickly in earlier years.  When I complained about that to the barista at the coffee shop on my way home tonight, I noted that the last time I had sung regularly was in 1987, when we left Kansas City.  The barista is of college age.  She immediately put into perspective the reason I might be a little rusty.  She was born in 1986.  How on earth did I get so old so fast!

As I was anticipating retirement and full time care of Mary Ann, I had visions of all sorts of things that I might do without 60 hours of commitments to my job as Senior Pastor of a large church filling my week.  I knew from the days and parts of days I was by myself with Mary Ann that it would be very hard to do other things.  The fall after I retired, reality set in.  Because of the vacillations that come with Parkinson’s, along with the addition of the Parkinson’s Disease Dementia, making those vacillations even more dramatic, it soon became clear that I could not commit to anything other than her care.

There are a number of folks in the online group of those in situations similar to mine, who are able to keep a few other activities in their lives on a regular basis.  I made a choice to just do the one thing.  I did it realizing that for me, the stress created by trying to manage regular commitments in addition to Mary Ann’s care was more than I could handle.  I still have no idea how, even with all the Volunteers, I survived the last seven or eight years before I retired.  I doubt that without our Daughter and her family’s move here to help out the last couple of those years I would have made it.  I continue to be grateful for the Staff with which I worked, who seemed to be willing to do anything to help, and a congregation with very understanding leadership, willing to do the same.  It is beyond comprehension that so many in the congregation were willing to give so much of their time and energy to help us in our day to day survival, some still doing so.

As I have said many times before in these posts and elsewhere, while I would not wish this horrible disease on Mary Ann or anyone else, I am in awe of what compassion in action has surrounded us on account of it.  I can only hope that those expressing that compassion have found some meaning and fulfillment in doing so.  We cannot repay what has been given so freely.  We can say thank you.  It is all I know to do.

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