May 16, 2010

Great Visit!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , |
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Coleman and Trudy live in Oklahoma on an inlet of Grand Lake.  They were members of my first parish in the Kansas City area.  They have a beautiful rustic setting and appreciate wildlife, especially the birds, as do we.  They brought Oklahoma Joe’s BBQ (from Kansas City).  We ate and talked and mostly enjoyed the birds.  The birds were very active, busy all the while we were watching. It was rainy all day, but never really rained. It seems as if the birds spend more time at the feeders on rainy days.

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?

 

May 16, 2010

Happy Birthday Mary Ann!

Posted by PeterT under Daily Challenges, Family, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , |
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Well, it wasn’t wild and crazy partying, but given our circumstances, it was okay.  After sleeping well last night, Mary Ann got up some time after 10am.  For some reason, when we were finishing with her pills and food (she was already dressed). I remembered a couple of music CD’s we had gotten when Occupational Therapist Karen was working with Mary Ann using rhythmic movements in her therapy.  It is a CD of big band music from the thirties and forties.  Even though we were not born until the early 1940’s, the music was part of our very early history.

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.

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.

 

May 14, 2010

She Finally Crashed!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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After she settled around 9pm last evening, she slept soundly until 2pm this afternoon.  There was one interruption as the Hospice Aide tried to get her up for a shower.  She told the Aide she was too tired.  I agreed that she needed the sleep more than a shower.

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.

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.

[Too tired to edit — publishing as is.]

 

May 13, 2010

Rollercoaster Ride is Stuck at Bottom of Dip

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There seems to be no end in sight to the constant hallucinating.  It continued last night until about 3:30am or so, and fired up again some time in the 6am to 7am range.  When she is awake, she demands constant attention since the her mind is driving her this way and that.  She is anxious to tell Daughter Lisa about the girls bringing a wagon from the downstairs to help her when she fell.  Mary Ann even described the worried look on Ashlyn’s face.  They are still at their home ten hours away in Louisville, Kentucky.

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.

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.

 

May 13, 2010

Half a Night is Better than None

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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She finally stopped sitting up with a new hallucination/delusion/dream filling her reality some time before 3am.  This was my 6:30am morning to arise and get ready for the 7:30am Spiritual Formation group, so I didn’t gain a full half-night’s sleep. It still helped some.  The Group conversation is always very helpful in the matter of maintaining some sort of equilibrium (a hard thing to come by lately).

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.

 

May 9, 2010

Quiet Mother’s Day — A Bit Pensive

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

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

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

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

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

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

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

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.

 

May 9, 2010

Mary Ann Sleeps — Oriole Entertains

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The hallucinations/delusions/dreams mixed with reality finally calmed enough by about 3am this morning for her to get to sleep.  The good news is that she stayed asleep long enough so that I could get caught up.  I got up a little before 10am.  She slept on until almost noon.

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.

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.

 

May 5, 2010

Clenching Teeth — Bad Idea

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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Stress sometimes produces odd markers.  My stress marker apparently is clenching my teeth.  It is a bad idea.  I ended up at the Dentist’s office while Mary Ann was in her Tuesday morning group.  The good news is that the pain is apparently not signaling an abscess.  No root canal!  Yeah!  The bad news is that I am wearing though the surface of my teeth, even some crowns.  It does not bode well for the future.  There are likely to be expensive sittings in a dental chair coming at some time.  For now, a night guard is the weapon of choice for trying to stave off major work for as long as possible.

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.

 

May 3, 2010

Confusion Switch Flips On Suddenly

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , |
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It just happened so suddenly. Volunteer Deb arrived for the evening.  As I was getting prepped for heading out, Mary Ann got up and walked into the kitchen.  Deb was with her, as was I when she fainted.  We got her in a chair, then into her transfer chair.  She immediately popped up again, without the brakes yet set.  We got her to her spot by the little table at which she sits in front of the television.  She stood up again.

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.”

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.

 

May 3, 2010

Mary Ann Attends but Misses Trio

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , |
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As we rolled back to the car after the concert this afternoon, Mary Ann asked why the trio I was singing in had not been asked to come up to the front to sing.  We did sing, but somehow it did not register in her mind.  Caregiver Debbie said that she had pointed out when I went up front to sing and that Mary Ann had responded that she saw me. The Parkinson’s Disease Dementia is such an odd sort of disease.  Perception is sort of like Swiss Cheese, there are random holes with no explanation as to why they are where they are.

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.

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

 

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