We may or may not use them since the pain has now subsided.  Mary Ann had some heart pain tonight.  At first, one nitro pill seemed to take care of it.  Daughter Lisa was with her while I had a couple of hour break at a church event.  When I returned, Mary Ann said her chest still hurt.  We used two consecutive nitro pills about ten minutes apart.  She still said she had the pain.

At that point, I phoned the Hospice Nurse.  She suggested trying a third nitro pill.  She also said she would call the Medical Director.  She thought he would probably suggest the oxygen and Morphine.  The third nitro pill seemed to work, but the wheels are now in motion for us to receive the oxygen and Morphine tonight.  It is about 11:30pm as I am writing this.

Today had some tough times and some good times with Mary Ann.  The first activity this morning was at least a half hour of intense physical exertion in the bathroom.  It exceeded the terrible Saturday morning bout a couple of weeks ago.  There was a lot of production this morning when on the toilet stool (a good thing), but the fainting and form of seizure that results in her stretching out and stiffening all combined to make it harder than ever to handle.  I was dripping in sweat by the time it was over.  I did not call Daughter Lisa for help since I wanted to determine whether I would be able to do it by myself — probably not much longer.  I will need to figure out a way to take care of those tasks while she is still in bed.

The good times included a thorough cleaning by the Hospice Aide.  It was a bed bath with the addition of hair washed with shampoo and water in an inflatable basin for that purpose that I bought at the Munn’s Medical yesterday.  Sonya got her dressed and brought her out in the transfer chair.  She had the best hour or so we have had in many days.  She greeted Lisa and Granddaughters Abigail and Ashlyn.  She drank Cranberry juice, she ate tapioca and yogurt, drank water.  Then we rolled her outside to join Lisa in watching the girls use the little slippery-slide Lisa got at Target yesterday.

Neighbor Carol came by and spent time with Mary Ann, as well as Lisa and the girls.  After a while, Mary Ann needed to lie down again.  Friend Jeanne came by for a few minutes to see Mary Ann, as well as Lisa and the girls.  Mary Ann stayed in bed either resting with her eyes sometimes open, sometimes closed for the rest of the day.

At one point in the afternoon, she seemed to want to sit up, so Lisa helped her get up on the side of the bed.  Shortly, she fainted and shifted into the stiff as a board mode.  We got her back lying down.  Later, just before I left for the Youth Fundraiser, Lisa and I took her to the bathroom.  It went reasonably well, but ended with the stiff as a board mode.

…It is now about 12:30am.  The oxygen is here.  Hospice Nurse Lisa brought the Morphine and explained how and when to use it.  Her vitals are so good (other than the blood pressure) including the oxygen saturation percentage, that it seems unnecessary to use the oxygen right now.  If the chest pain returns, I will start it.  That is in accord with Nurse Lisa’s counsel.  The same is so with the Morphine.  I will give the lowest dose if she gets agitated, has trouble breathing, or the chest pain returns.

It was quite a flurry of activity, maybe not actually necessary at this moment since the pain subsided.  It is comforting to have helpful options available for the time that those options are needed.  Things seem to be moving both up and down pretty quickly.  Knowing Mary Ann, I will make no predictions on how things will proceed from here.  I am just along for the ride.

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We are really not liking this!  The four of us, Mary Ann, Lisa, Micah and I are in limbo.  Now we know more about the landscape of limbo, at least this one, but it is still limbo.

Mary Ann has not yet begun actively dying.  Vital signs are not falling into the pattern of those dying of physical illnesses such as Cancer.  That could be comforting, especially to kids who live out of town, hoping to have time to get back when the end is near.

Of course, it is not likely to work that way with Mary Ann.  Apparently, dementia patients often don’t play by those rules.  They may have solid vital signs up to the moment they die.  When the mind precedes the heart or other organs in precipitating death, it can just happen whenever it chooses. There may be no warning.  It just goes with the territory.

I have become accustomed routinely to listening carefully when Mary Ann is sleeping or unconscious.  I listen to see if she is still breathing.  There is a new level of awareness of how easily my listening could reveal that the end has come.  Even after Hospice Nurse Emily said that, I still expect there to be more preliminary signs that the end is nearing. Many of those in the online group of spouses with Lewy Body Dementia, have described a traditional shutting down when their Loved Ones died.

When Son Micah asked if Mary Ann was now on a trajectory of probably weeks, Nurse Emily said that what has been happening suggests that that is a correct assessment of her condition.  She quickly added the disclaimer, that things could change and Mary Ann could bounce back to better health for a time.

We talked about how much of what is happening might have more to do with the medicine than the disease process itself.  Nurse Emily reviewed what has been happening in these past days, noting that Mary Ann has not had many of her pills on a regular basis.  While the meds may be having some impact, the trajectory of the decline seems pretty clearly to be the disease process bringing her to the last stage of the disease.

In responding to my request for either some form that is easier to administer or permission to drop Mary Ann’s Crestor for cholesterol, the doctor suggested discontinuing it.  He said we could crush it if we wanted to continue administering it.  The truth is, I haven’t yet tried to give her any of her night time meds.  At this point in the process, Mary Ann’s comfort is the prime issue.  Any of the meds that will help keep her comfortable, have priority.

Even food is optional.  If Mary Ann wants some thing to eat, or will take it if put to her lips, she will eat.  If she indicates she does not want the food, that is her choice to make.  If she will take water or juice, we will be sure she has all she wants.  If she will not, that’s that. When at this stage in life, the body needs very little to sustain itself.  She will know what she needs and when — and if she wants to have it.

While she would not so much as take a drink of water most of the day today, late this afternoon, whe she started moving around in bed, Daughter Lisa got her up, helped her with personal needs, and started feeding her applesauce.  She ate about a cup of applesauce followed by a small piece of ice cream pie, followed by some water.  Lisa fed her the applesauce and I fed her the pie.  She was up for a couple of hours.  We are suspecting that the Granddaughters’ activity helped stimulate her to stay present with us for such a long time. I took her in to lie down when Nurse Emily came for the family meeting.

There is absolutely no predicting how this will go.  Mary Ann is not about to follow anyone’s expectations for the path she will take.  This will happen on her terms, and no one else’s.  God’s role was making her, not telling her how and when to die.  Gratefully, God’s love for her is without limit, just as it is for the rest of us.

With that said, those of us who love her certainly are in limbo.  It is too soon to begin grieving her loss.  She is not gone.  It was sort of odd to hear Nurse Emily speak to us words that I have spoken to hundreds of others in forty years of ministry.  She urged us to work through our feelings and when we are ready, to share with Mary Ann our love for her and let her know that we will be okay when she decides she is ready to go.  It is not urging a person to die, but giving permission to go when the time comes.

Mary Ann took a few sips of water when I went in at about 11pm.  I gave her a heart med and one that helps her sleep.  She seemed to manage swallowing them.  I will be very interested to see if leaving out so many meds will affect her sleeping pattern.  I hope we can find our way to restful nights as often as possible in what time we have left together.  That would be good for both of us.

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She ate one six ounce container of Yogurt for breakfast.  That was the biggest breakfast in four days.  Then she didn’t even eat the ice cream pie for supper.

I made the mistake of taking her blood pressure when she was lying in the bed this morning.  I thought it would be up some since I restarted the Midodrine yesterday to see if we can reduce the fainting spells.  Her BP measured 280/130.  That is frighteningly high.  Here is the kicker: twenty minutes later, while sitting at the table I measured it again. It was 95/75.  In the mid-afternoon, while she was lying down, I took it again.  It was 245/115.

Since we have few options, I plan to continue the Midodrine at some level.  She has still been fainting, in fact there is a new twist.  After being out for a while, twice shen stiffen like a board in a mild seizure-like event.  She wouldn’t bend — in the middle or at the need.  She was stretched out full length, locked in that position.  It happened once when trying to get her back into bed.  It happened a second time while on the toilet stool, dealing with a messy BM.  The good news is neither did I become frustrated or get upset.  I just laughed.  I waited until the stiffness seemed to soften a bit and just picked her up and repositioned her.

I am tired of being upset about what is happening.  It is time to just deal with it.  I am grateful that our Daughter, Lisa, and Granddaughters, Abigail (7) and Ashlyn (5) arrived late in the afternoon.  It has been good to see the girls and have Lisa to talk with.  Just as Son Micah got to experience the challenge of bathroom duties on Monday, Lisa got to experience that challenge today.  Mary Ann responded a bit a couple of times to Lisa.  Whether she is able to respond or not, it is clearly meaningful for Mary Ann to have them here.

I did get to talk with someone on the Staff at the Senior Diagnostics Center at a local hosptial today.  The person was a bit abrupt and on hearing that Mary Ann had been diagnosed with Lewy Body Dementia two or three years ago, she responded that LBD folks go quickly.   While I do not wish to ignore the harsh reality of our situation, it was no fun to have it tossed in my face in such a matter of fact way.  I explained the situation, adding that her vitals are still pretty good.  She did not dismiss us out of hand, but seemed genuine in saying that she would check with the doctor and call us back tomorrow.

I have very low expectations of any meaningful option emerging when she calls back.  There are some hints that the Midodrine raising her BP is allowing a little more mobility — at least for a few moments before fainting.

It was good to have an extra set of hands and arms when the heavy lifing came.  Lisa was a CNA for some years while in high school.  She ended up Administrator of a large multilayers facility for the older population.  She has been parenting full time since the girls were born.

Tomorrow evening, Son Micah will join us as we look at the rapid developments these last few days.

There is more that I could say, but I am struggling to keep my eyes open.  It is time to sleep.

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Her vital signs are still good.  It is too soon to give up and simply wait.   Her lungs are clear, her blood pressure is within her normal wide range, heart beat is steady and normal for her, oxygen saturation percentage is good.

She managed to swallow most of her morning pills with a little juice.  She was in bed the rest of the day.  Every two hours I got her to take meds I couldn’t get her to take yesterday.  Tonight, she indicated again that she would eat some ice cream pie.  She ate a small piece.

Then came the dreaded bathroom battle with some messy BM.  The difficulty is at a 10 each time now.  I will do it as long as physically possible.  I can only hope that my muscles will respond by strengthening to match the task. I got her back in bed and shortly thereafter gave her the nighttime pills, which she did manage to swallow, with difficulty.

The last ditch effort is this.  I mentioned it in last night’s post.  I am giving her less Seroquel in hopes she will be able to sleep less during the day and be more alert.  I have begun the Midodrine again to raise her blood pressure to a level that months ago seemed to control the fainting.  I recognize that these changes not likely to make much difference at this point, but the options are simply slipping away.

I managed to get hold of the office of the Psychiatrist that was recommended as one capable of handling this complex a combination of problems.  I was informed that he does not take outpatients.  There is a Physician’s Assistant that works with him who does.  An appointment with her would be at least a month out.  At this point a month is an eternity.  We are focusing on hours and days in determining what to do. The only access to that doctor would come through the inpatient Senior Diagnostics program at the hospital.  I may call and go through the process that determines eligibility for admittance. We are running out of options.

The Hospice Nurse is going to check with the Pharmacist to see how many of the meds might be available in liquid or some other form that would be easier to take.  She is also going to have the Pharmacist see if there are any meds that can be eliminated since they are for long term issues.  For instance, the cholesterol medicine, which is a fairly low dose seems superfluous at this point.

Volunteer Tamara stayed with Mary Ann for a while this afternoon.  I was able to get out and run a couple of errands.  One resulted in the added frustration of replacing a broken wireless network adapter on the computer we have in the living room so that Mary Ann can see pictures of the Grandchildren.  Of course, I can’t get the new adapter to work properly.  The stress of trying to phone someone and spend an hour or two trying to follow directions is just not something I can deal with at the moment.  At this point, little frustrations become huge quickly.  My lack of computer skills is impressive.  I will leave that problem for another time.

Volunteer Tamara asked if the Hospice Nurse had checked Mary Ann for pressure sores.  Now that she is lying in bed all day long every day, that is likely to become a problem soon.  Daughter Lisa has suggested that I turn Mary Ann when she is in bed for a long period of time.  I realized that the Hospice Nurse probably should have picked up on that concern checked for problem areas and offered a hospital bed again.  I will phone and ask about that since I need to ask the Hospice Aide to bring more wipes and chux.  At the Nurse’s suggestion, I am using chux to catch what has almost constantly been coming from Mary Ann’s mouth these last three days.

Since Mary Ann has been sleeping all night long the last few nights, I am not sleep deprived.  I still feel as tired as when the nights were difficult.  I have little doubt that has do to with the mental and emotional drain of accommodating the recent changes and their implications along with the frustrating search for adequate medical support.

One piece of good news is that Daughter Lisa and Granddaughters Abigail and Ashlyn will be arriving tomorrow afternoon.  They plan to stay for a few days.

We have been in uncharted territory for most of the time the Parkinson’s has been around, and certainly since the dementia has joined the fray.  The distance to the end of this uncharted journey seems to be diminishing at a frighteningly rapid pace.  I will continue to search for options, at least while those vital signs stay strong.

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I simply could not get her pills into her mouth and swallowed this morning.  It is the first time this has happened other than many weeks ago when she slept through a few days.  She drank a couple of ounces of Cranberry juice as I prepared to give her the pills.  Then her lips sealed shut and she ceased to be responsive at all.  I was going to try to force the pills into her mouth, but when I determined that she could no longer drink the juice or water, I knew that I could not risk her choking on the pills.

Yesterday she stopped swallowing after swallowing her pills and eating a few spoons of yogurt. At lunch yesterday, she stopped swallowing after a few bites of food.  Last night she managed to swallow her night time pills.  Today, she stopped swallowing anything, including water for the entire day.  She got no pills, no food, no water.

She sat up some, with the saliva coming from her mouth much of that time.  Our Son, Daughter-in-Law and Granddaughter arrived in the late morning to spend the day with us.  For a while after they arrived, Mary Ann remained in the chair.  She was pretty much unresponsive, even to our Son, who can always get a response from her.

After a while I took her into the bedroom to lie down.  It became apparent that we needed a trip to the bathroom.  Our Son has been through helping his Mom with bathroom duties, so he helped with the project.  It was a comforting to me for him to have a first hand experience of just how difficult that task is.  It was hard even with two of us doing it.

After that, Mary Ann settled into bed for a long time.  I enjoyed the time with Son, Micah, Daughter-in-Law, Becky, and Granddaugher Choe (11yrs old).  We spent most of the day watching the large screen wildlife display provided by the sun room and waterfall at the back of our house. I realized I have little to talk about other than Mary Ann and the birds.

We talked about the current change in Mary Ann’s situation.  It has profound implications.  We have both signed Living Wills excluding a feeding tube.  If Mary Ann is no longer capable of swallowing food, we have just come to the end of a long journey.

Son Micah and Daughter Lisa (in Kentucky) talked on the phone for a while so that Lisa would be fully aware of what is going on.  She and the girls are due in this Wednesday evening to stay for a few days.  This scared all of us.  We are not ready for things to move to the last stages.

I phoned Hospice to talk with the on-call Nurse.  When she responded to the page, I explained the situation, voicing special concern that Mary Ann was not able to take  her morning meds.  The Nurse mentioned that in some cases meds could be given rectally (whoopee!).  She said she would phone the Pharmacist and check to be sure of that. When she called back, the Pharmacist had told her that the meds Mary Ann is taking are not ones that have been shown to be effective when taken rectally.  We could do it, but it would not be likely to do much good, if any.

It seemed reasonable to accept one day of no meds, but that certainly could not continue.  I concluded that I would make one attempt at giving them to her orally, and if that didn’t work wait until morning.  I asked the Nurse to connect with our Hospice Nurse in the morning so that we could talk through options.

It has been a pretty tough day contemplating what might be coming sooner rather than later.  I went in regularly whenever we saw on the little video monitor that Mary Ann was moving at all.  Each time I asked if she wanted some water.  At this point I am not sure of the time, but around the supper hour or a little later, she was moving some.  I went in and she took some water and swallowed it — the first time since the few swallows of juice first thing in the morning.

When I asked her a couple of questions, she was able to answer, “no” (more water? get up?).   Not long after that she stirred again and this time was willing to get up.  I asked if she was hungry.  She said, “yes.”

Then came a very pleasant surprise.  I should have known!  On a whim, when returning from getting some coffee, I picked up a Baskin and Robbins Grasshopper Pie.  Mary Ann ate every bite of a good-sized piece of that pie.  She swallowed every bite, and drank lots of water afterward.

She responded a bit to Micah after that.  The Kids headed back home.  Mary Ann soon went back to bed.  I decided I would act as if she had no trouble swallowing and follow the usual routine of telling her what I was doing, sitting her up on the edge of the bed, putting the pills in her mouth and giving her water to drink through a straw (the norm for how she drinks).  She swallowed the pills!

I did choose to reduce the Seroquel from the 150mg she has been taking since January, to the 100mg she was taking before that.  Since it has become absolutely clear that the Seroquel exacerbates the problem of hallucinations, and since one of its main purposes is to produce sleep (too much daytime sleep in the last days) it seems reasonable to try reducing this.  In some folks who have taken Seroquel, it has produced a powerful drugged state.  We are living pretty much at the end of our options, so I am giving it a try.  Of course I may regret doing so depending on what happens.  There is just no clear and standard approach to this form of dementia.  It is just too unpredictable with no consistent responses to medications.

One characteristic of forms of Lewy Body Dementia is that people can present with symptoms that cause Hospice or whoever is doing the medical care to suggest that the family be notified that the end is days or hours away.  Then the patient can turn around completely for no apparent reason and return to relatively full functionality.  With some folks in the online LBD Spouses group that has happened more than once.

I don’t know if we have just come back from the edge to have lots of time yet, or if tomorrow will bring us back to the edge.  When I got out of College and Seminary at 26 years of age, I knew so much.  Now at 67 I know so little.  What happened??

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I am just not sure how to assess the day, but I am sure I don’t like it.  The signs pointed to the hallucinations firing up last night.  She was restless at first.  The hallucinations fired up between 3am and 4:30am.  Then she slept for a while.

She did try to get up early, but when I took her to the bathroom, she fainted.  I had to put her back into bed and she slept for a while.  There has been a pattern that has played itself out all day.  When she is lying down, she has often been talking apparently about or to the hallucinations.  I described that before. She often has her eyes open when she lying there talking.

When she became alert enough to sit up, usually wanting to go to the bathroom, after a short time her eyes would slam shut and it would cease to be possible to communicate with her.  She simply could/would not respond.  I had to put her back into bed since there was really no other option.

She did manage to get up for breakfast, but then and most of the rest of the time I tried to talk with her, she could not speak intelligibly.  Once this evening when the words she used were recognizable, they did not match what she wanted.  She said she needed to cook a meal, when it became clear that she intended to say a drink of water.

[WARNING — GROSS CONTENT] I was barely able to get food into her mouth for the little bit she ate. At breakfast, she did get her pills down with much difficulty.  I fed her a few spoons of yogurt before she just didn’t take any more.  I found out shortly thereafter that the last bites had not been swallowed.  As she sat in her chair for a while, I had to get napkin after napkin to deal with what had not gone down, along with lots of clear fluid.  Sorry to include such unpleasant stuff, but it I have passed the will to be delicate and I am too tired to try to think of some cute euphemistic way of saying it.  This matter of not swallowing food and uncontrolled saliva production is a new and unsettling issue for me.

The difficulty in dealing with the once or twice a day intestinal activity really is pretty close to being unmanageable by myself.  To hold up her weight with one arm, as she is pulling away from me while I am cleaning with the other is just barely doable.  That has been continuing for many days now with no sign of improvement.

All of this is becoming a very old story to those of you who read these posts regularly.  What seems different to me is that we appear to be losing ground at a pretty rapid rate by comparison to past declines.  It seems that every few days something worsens.  The changes seem too rapid to me to be a normal part of the disease process.  In my mind the evidence still points to medication issues for the rapidity of the decline.  The trouble is that there seems to be no clear and definitive approach to medicating those with a form of Lewy Body Dementia that produces consistent results.  The same med can produce opposite results in different patients.

I may simply be in denial and the rapid changes may just be a function of the disease.  As our Parkinson’s Speicalist once said, after 23 years of the disease and the meds, there is no telling what problems are caused by side effects of meds and which the progression of the disease.

Volunteer Elaine came over to spend time with Mary Ann this morning while I went to the lake to sit and read and ponder and look for birds.  Today, it was hard to leave, and I couldn’t let go of concern for Mary Ann lying in bed talking to the hallucinations.  Mary Ann ended up sleeping (or just lying there) the entire time I was gone. I just don’t like how much more difficult this is getting and how fast it is moving.  It is not so much life threatening as it is that our system here at the house is being threatened.

One bonus this morning was that Elaine surprised us with a Quiche she made for us while at the house.  Not only that, but Volunteer Tamara had asked yesterday if she could bring food to us again.  When I answered her question about what Mary Ann liked, what popped into my mind was, Quiche.  This morning while Elaine was making her Quiche for us, Tamara brought two more.  Mary Ann ate a piece of one, although the same thing happened that had happened with the yogurt earlier in the day.  I ended up eating a couple of pieces of one and one piece of another by the time the day was over.  They all appear to have home made crusts.  They are wonderful.  One will end up in the freezer in pieces to be heated in the microwave later, but I suspect two of them will be long gone before that happens.

I am hoping for a better day tomorrow since our Son, Daughter-in-Law and Granddaughter are coming over for a while for Memorial Day. The menu will be Quiche — and Glory Days pizza for those who are not into Quiche.

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Here we go again!  Last night included a number of times up, suggesting that we were cresting the hill on the way back to hallucinations.  During the night, they were not as intense as I expect them to be the next couple of nights (hopefully only a couple) before there is any realistic hope of a break from them.

This morning she started trying to get up very early.  I managed to get her back in bed a number of times until about 7am.  I gave up on that strategy and got her up.

The truth is, I am more frustrated with my reaction to the hallucinations than I am the hallucinations themselves.  I want to become able to take them in stride and respond without getting grumpy.  I apologized for being so grumpy and explained to her that I was frustrated from trying to deal with them for so long and feeling helpless to do anything about them, especially with no medical help from a competent doctor at the moment.  I was a little surprised that she responded in a way that suggested what I said had found a path through the hallucinations to Mary Ann herself.  She seemed to understand what I was saying, recognizing especially the issue of trying to deal with this with no doctor in the picture yet. In fact she managed to describe of whom she was thinking well enough to determine that she was suggesting a local Neurologist whom we have used in the past (when she had a stroke), a doctor we like.  He is not likely to have the specialized knowledge that we need, but it is worth a try.

At the moment, I have not received return calls from two contacts made last week.  I am disappointed, since in one case a nurse from a dementia clinic was supposed to phone with answers to my questions about Lewy Body Dementia.  In the other case, I left a message on an answering machine. The only option from which I have the information I need that would allow us to proceed is the one I find the most distasteful.  It would involve a few days in the hospital.  The hospital has always thrown Mary Ann for a loop.  In each case there was pretty much a psychotic break from which we never really regained the lost ground.

Today, after our conversation, Mary Ann managed to stay seated long enough for me to get a shower.  I gave her the morning pills and got her breakfast.  It was not too long thereafter that she ended up back in bed.  She said she wanted to go to the bathroom, but she fainted to such an extent that I could not get her on the toilet stool.  I put her back in bed and she has been there ever since.  That was around 9:30am.  It is now almost 4pm.

Volunteer Tamara, came at 10am to give me a chance to nap if we had had a difficult night.  The timing was perfect since this was the first bad night in the last five.  When Tamara was with Mary Ann last Monday evening in a regular Volunteer slot, it was obvious to her that I had not slept much either in the prior 8 days of Mary Ann’s intense hallucinating.  She suggested the option of adding a nap time option on Saturday and one other day next week.

Volunteer Coordinator Mary and I are talking about adding a Saturday time slot regularly just for that possibility.  There is no way to be sure when bad nights will come, but having the time to nap or just get away for a while is helpful.  This morning I was able to nap for a couple of hours and also leave the house to do a couple of errands before Tamara was due to leave at 1pm.

While, since Mary Ann has slept so long, I would have been able to nap today, I would not have been able to get out to do the errands.  I could not have known in advance that she would sleep most of the day.

What lies ahead is still unknown.  Of course, that is always true, but there are not even clear expectations.  The pattern from before the increase in dosage of Seroquel was that Mary Ann would hallucinate for two days and three nights, then sleep for two days, then have a transition day during which the most lucid moments came. Then the hallucinating would begin again.  Since this disease is so erratic in its presentation, using the word “pattern” is pretty silly.  It does what it will do when it chooses — and that is that.

…It is about 9:30pm now.  She slept through until about 6:30pm.  She had indidcated that she wanted something to eat, but by the time we got to the table, she was no longer able to speak intelligibly.  I couldn’t figure out what she wanted or if she still wanted anything.  I just held her for a while.  At that point, she couldn’t sit up straight — almost fell off the chair.  I did manage to get her to take some spoonfuls of applesauce.  Finally, she just could not respond in any way.  It was tough to get her from the dining room chair to the transfer chair.

I managed to get her to the bed, but by then it was apparent that there had been some intestinal activity.  She was almost completely limp, but I needed to get her to the toilet stool, cleaned and changed and back into bed.  If last Saturday’s struggle with that task was a 10, this one was a 9.9.  It all got done and she ended up back in bed.  I was physically as exhausted as I was last Saturday.  I was not as emotionally exhausted.  For whatever reason, I kept my cool during this one.  I just did what needed to be done.  I hope some progress has actually been made in dealing with that problem.  Admittedly, I was much more rested today than I was last Saturday.

I settled on the deck for some devotional reading.  It was a beautiful evening, warm, but with a pleasant breeze.  After a short time there, I saw on the video monitor that Mary Ann was moving.  I went in to check.  She was able to speak more clearly.  She wanted to eat something. This time it was some vanilla ice cream with hot fudge and pecans.  After eating, she watched Dr. House for a half hour or so, and has now taken her bedtime pills and gone back to bed.

Today while she was lying in bed, on occasion she would be there with eyes open, talking to people only she could see.  While we were sitting next to one another in front of the television before she finally went to bed, she was doing the same, this time with her eyes closed.

Sleeping all day and having moved into the hallucination cycle leads me to expect a more difficult night tonight than last night.  She appears to be restless at the moment.

…This time it was another trip for #2.  This time it was at least a 9.95 compared to last Saturday’s 10.  She was sort of dead weight thrughout, but including enough involuntary twisting and moving her weight against what I was trying to do as I sought to hold her up, that I almost could not get the task done.  If nothing in this short and chubby body gets broken, pulled or herniated, I am going to be a force to be reckoned with physically.  This is like going to the gym multiple times a day.

I had better close, otherwise I may be writing all night and have nothing left to write about tomorrow — unlikely!

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She was awake for almost half of the day!  I enjoyed having her present with me again.  Her presence included a question about when we would hear the verdict.  One of her dreams, the one to which she woke crying because she had been beaten by a police officer, included a follow up in which we were to go to court.  She was referring to that dream, still confused with reality.  It is what I suspect is part of a series of living dreams that have collected bits and pieces from Law and Order episodes and thrown them into a new configuration.

She was lucid enough to at least hear my suggestion that she is free to take that off her list of worries since it never actually happened and was only a dream.  So far, the hyper hallucinating has not returned.  It certainly seems to be on the horizon.  I thought the hallucinations might fire up last night, but they didn’t.  Since she was awake more of today and spoke of the dreams as if they were still a reality, it seems more likely that the return is near.

The last four days have provided a chance for Mary Ann and I to reconnect a bit.  It is very hard to connect with one another when she is constantly in a world of delusions and hallucinations.  The last few days we have been able to express a gentle warmth with one another, a lingering hug when moving her from one chair to another, a soft kiss while in front of the fridge getting ready to pick out something for lunch. I will miss that when the hallucnations return.  I have a quiet hope that by reducing the Seroquel, the intensity and frequency of the hallucinations might diminish a bit, allowing a little space in between to reconnect.  I hesitate to hope since so often that for which I hope gets lost in the next crisis.

We did get out in the car today.  Mary Ann ate well at breakfast, stayed up for a couple more hours until Hospice Aide Sonya came to give her a shower and do her hair.  Mary Ann was hungry for lunch as soon as that was done. She ate a good lunch with a half sandwich, chips, Pepsi, and Concrete from Sheridan’s that had ended up in the freezer one evening a couple of days ago.  After lunch, I got her into the car and we headed out for some errands.  She stayed in the car, while I ran in and out of three or four places.  It was not long before she was dozing in the car, but at least we were out.

She slept for a couple of hours when we got back, then she got up and ate a small supper.  This seems to me to be the first day in many in which she has eaten three meals, even if the last one was small.

She is back in bed, having taken her pills.  She slept reasonably well last night.  My expectation of a difficult night has increased tonight based on the increase in her activity today and the questions about the dream she has mixed with reality. She also seems restless at the moment.

The good news is that if it is a bad night, Monday evening’s Volunteer Tamara offered to come for a time in the mid-morning tomorrow and the afternoon next Tuesday to provide some nap time options for me if needed.  I was very obviously suffering from lack of sleep last Monday after the 8 day run of intense hallucinations at night as well as parts of the days.

I made a belated phone call to my Brother and Sister-in-Law who had a combined surprise birthday party in conjuction with the Confirmation of one of their Grandsons.  One turned 80 and the other 81. Happily, they are both in good health and as feisty as ever, and they certainly are a feisty pair.  They have a genuine woodland and pond in their back yard measured in acres rather than feet.  Their garden is huge.  The bee hives provide them with honey. When it is cold, wood cut from their and their Son’s property warms them in the wood burning stove.  Two of their Children and three Grandchildren live moments away.

I was disappointed not to be able to travel the ten hours to the surprise party.  My four Brothers and Sisters were together at the party.  Three had come a five hour drive to attend.  As a Pastor, we have lived at various places, none close to our families of origin.  All five of us have discovered more interest in getting together in recent years, but Mary Ann’s and my circumstances have not allowed us to join them very often.  We have a great time when we are together.

For now, it is my intention to try to get to bed earlier tonight in anticipation of what might come during the night.  I suspect the respite is coming to an end.

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There is no reason to think the hallucinations won’t be back.  She is still sleeping all night and most of the day.  I expected them to fire up last night.  They didn’t.  I expect them to fire up tonight.  I am assuming that Mary Ann is just adjusting to the lower dose of Seroquel, that she will sleep off the transition and return to the cycle of sleep days followed by hallucination days.

She got up pretty early, was up for about an hour and a half this morning, and went back to bed.  While she was up, she took pills and ate a good breakfast.  She was calm and lucid.  She says very little when she is up.

She was up again early this afternoon. I got her dressed. She ate a good amount of food for lunch.  Again, she was calm and lucid.  She lay down after an hour or so.  As has been so every day since last Saturday there was some intestinal activity, sometimes almost as difficult to handle as Saturday’s problem. Other than that, the care issues have been minimal.

At this moment it is a little before 7pm and she is still sleeping.  I am concerned about how much she is sleeping, but comforted that she is eating reasonably well at least at breakfast and lunch.  There is less production by her kidneys, but since she is sleeping so much, she is not taking in enough to produce much.  The color is okay.  I will certainly keep an eye on that.  If I get concerned, I will call Hospice to talk with the nurse.

Because she is lying down so much, when she does get up, she is vulnerable to fainting, but even that is not as bad as it has been at times.  I have done nothing much today, just waiting and watching.  I have the monitor on so that whenever I am back here at the computer I can see if she is stirring.  Otherwise I just go in and out and check to see that she is okay and ask if she wants to get up.

The only progress today is that I got a phone call in response to the fax that I sent.  The Nurse was clear that the Neurologist would still be available to deal with the Parkinson’s but not the Parkinson’s Dementia or any medicines used to treat the hallucinations (the primary symptom of Parkinson’s Disease Dementia).  I said nothing in response other than asking for clarification that he would still see us at our next scheduled appointment.  I asked if he would renew the Seroquel Prescription that he started prescribing about a decade ago.  She said that whatever Psychiatrist we  find should do that.  I have to say that everyone in the online Lewy Body Dementia Spouses group, as far as I can tell, uses a Neurologist and not a Psychiatrist to deal with their Loved Ones’ [LO] treatment and medications.  These are a few hundred folks who have been dealing with this disease, some for very many years.  Very many LO’s have hallucinations and delusions and sleep issues identical to Mary Ann’s.  Among them, the use of various medications including Seroquel works for some and not others.  There is no consistent pattern of treatments.

…She got up again at about 7:30pm to go to the bathroom and change into her pajamas.  Then she returned to bed.  I will wake her at 8:30pm or 9pm to give her the bedtime pills and see if she is hungry.

…I got her up to take pills at about 9:15pm.  She wanted to eat something and chose a single serving container of applesauce.  She lay back down as soon as she was done with the pills and the applesauce.

I did take a little time to sit on the deck this evening, reading some more of the book of meditations (titled Christ, My Companion) on the Prayer of St. Patrick (St. Patrick’s Breastplate).  The writer, Marilyn Chandler McEntyre, is an intelligent and spiritual writer who reflects good Biblical scholarship and an appreciation for the intricacies of the Physical Sciences.  That is a combination I especially appreciate.  It always helps tune my mental and spiritual receptors when I read in a woodland setting even if human-made, located in our backyard.  The trees, flowers, sounds of the waterfall, birds, and tonight, fireflies, all helped create access to my spirit.

I took a moment to go to the front of the house with my binoculars to bathe in the light of a bright perfectly round full moon, just rising from the horizon between two trees.  It is surprising just how much of the landscape on the moon becomes visible with good binoculars.  With such a bright full moon, I didn’t expect to see so many stars and planets, even a couple very close to the moon, still visible.

Mary Ann seems to be sleeping, but she is doing the jerking that I  have seen  more often lately.  I may just be seeing it more since she is sleeping more at the moment. I don’t know if what she is doing qualifies as Myoclonic Jerks, but even if they are, to my knowledge, it would make no difference in treatment.

I continue to wait for the hallucinations to begin again. I am getting spoiled by having time to rest.  I would be happy for them to take a long vacation and leave Mary Ann alone for a while.

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Today was a respite from the hyperactive hallucinating with me tagging along hanging on to the gait belt.  For most of the last two days, Mary Ann has been sleeping or resting but certainly calm even when awake.  Her speech has improved even though she is saying very little.

Yesterday, she was almost completely unresponsive.  This morning she refused her shower.  Monday and this morning she seemed not to know her Bath Aide Zandra of whom she has come to be very fond. When I came in after the morning Spiritual Formation Group on the deck, she was sitting at the table with Volunteer Maureen trying to feed her some yogurt.  Mary Ann was crying.  I guess she had been since Zandra got her up.  I assumed she had had one of those sad dreams that sometimes come.  When I asked her about it, she said she couldn’t remember why she was crying.  She might have forgotten or she might not have wanted to tell me about it.  I think it was the former.

As the day has worn on, the short times she has been up have gone pretty well. She has seemed calm and lucid and connected.  I haven’t seen her that way in over a week.  It seems reasonable to conclude that the addition of a morning dose of Seroquel ten days ago made things worse rather than better.  I expect the hallucinations to begin firing up again, probably tonight, but I hope they will not be as intense as they were before we removed the morning dose of Seroquel. Whatever comes next in our relationship to a physician, I will be asking lots of questions about the Seroquel she is still taking, the night time dose.

The last two days have provided me with a little more rest.  Even if still tired, I feel better and seem to have regained the ability to experience moments of respite.  Last evening while Volunteer Patrice was at the house with Mary Ann, I went to my favorite local spot to enjoy that wonderful view and a spectacular sunset.  The sun was a huge ball with the light refracted enough so that it was possible to look at it as it passed behind a horizontal band of cloud, showing above and below the cloud before reaching the horizon.  As I was looking toward the sun the sky and clouds were glowing as if on fire.

Then I saw something I have seen in movies on rare occasions, but never in person.  I took the binoculars and pointed them in the direction of the sun, providing a view as if through a movie camera lense.  The air was filled with Cottonwood seeds, carried in those tufts of white fluff.  The sunlight caught them in a way that made them look just like the embers that fly up from a bonfire when the burning wood is stirred.  The air was full of those firey embers being blown gently across the scene provided by the binoculars.  It was sort of entrancing as I watched them floating through the air.

The weather allowed this morning’s Spiritual Formation Group to meet on the deck.  It was a beautiful morning in spite of predictions of storms.  The birds were loud and busy. The sky and clouds were in stark contrast of deep blue and bright white.  There was a breeze that cooled us periodically as we were warmed by the bright sun.  The conversation was thought provoking and satisfying as we caught sight of the power of community and the need to have reverence for others and the setting in which we live together.  As always, I am struck by the commonality that we have since we are all made of the same stuff, earth.  The first person in the Biblical account of creation is named Adam.  That name is the Hebrew word for earth, dirt, adamah. We call ourselves human, from the word humus, the dirt from which plants grow — fertile soil.  Whether one happens to have a spiritual view of reality or one without a spiritual dimension, the same is true.  We are made of the stuff of earth – all of us.  No one can claim to be better or more valuable than another and still speak the truth.  We may do things that when measured by others have greater or lesser value, but we are at the core, the same.  That seems to me to be the key in this hostile world to any path that might lead to real peace — no winners and losers, but full participants in our common humanity.   Such peace is only a dream in a broken world of imperfect people, but possibilities start with dreams.

Later this morning, I experienced a mini-retreat with fellow group member, former parishioner and friend Paul as we walked some property that reminded me a bit of my favorite place of Spiritual Formation, St. Francis of the Woods in Northern Oklahoma.  A friend of Paul graciously gave him permission to bring me out to this remarkable spot that provided an expansive and secluded field of wild flowers and native grasses completely surrounded by trees.  For me it was a bit of a step back in time to my childhood days of wonder over weeds and bugs and birds.

The deck and the area surrounding his friend’s house were filled with birdsongs.  There were wrens singing so loudly that it almost hurt my ears.  Other birds joined in.  Flowers in various stages of the growth cycle were to be found in bed after bed.  The trees were even dramatic in shape and texture as they reached into to one another, displaying varying shades of green. One large tree next to the deck had multiple gnarled trunks providing lots of play areas for the birds to entertain as they hopped from branch to branch.  There were art pieces, small and large, metal sculptures, everywhere I looked near the house.

Afterward, I was out of breath and hot and sweaty with boots wet from walking through the weeds but refreshed by the experience.  I am grateful to have felt good enough last evening and today to enjoy those experiences.

As I said, I am expecting the hallucinations to begin firing up today and tomorrow, based on past experience.  I am hoping that some of the contacts and calls will begin to bear fruit as we look for good medical care for Mary Ann for the rest of this journey.

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