April 27, 2010

A Sumptuous Feast

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , |
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Last night Volunteer Tamara came over and picked up a number of cooking dishes, so that she could bring a supper for us to cook here tonight.  Anybody hungry?  The cooking dish she took was far too small.  When the food came this afternoon, I needed to get the turkey roasting pan from downstairs to hold the roast and vegetables.  The pyrex loaf pan was filled to the brim with a spinach, onions and cheese side dish.  The Jello mold she had picked up from us could not be used since it was barely more than half the size necessary to hold the mult-layered fruit filled molded Jello that came with the meal tonight.  Then there was the ten by thirteen pan filled with a lemon dessert to be cut into many bars.

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

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

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

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

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

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

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

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.

 

April 25, 2010

Kiteboarding at the Lake

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Are you at least a little curious?  Can you picture just turned 67 year old Pastor Pete Kiteboarding at Lake Perry on a Sunday morning?  This retirement is really something!

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

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

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

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

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

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

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

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

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

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

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.

 

April 24, 2010

Not So Good Today

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I had little doubt we were on our way back to confusion last night.  The numerous commode trips returned along with a couple of times just sitting up on the side of the bed.  This morning she accused me of lying to her when I disagreed that when the kids were visiting they had been playing with a ball with fire in it. I let that one go without trying too hard to argue against what she was convinced she had seen.

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

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

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

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

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

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

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

 

April 23, 2010

Refreshingly Normal Day

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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It seems odd that a simple day of getting up, doing stuff and going to bed could be so great.  We both had an appropriate number of hours of sleep.  We got up and a reasonable hour.  Mary Ann seemed to be connected to the realities of the day.

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

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

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

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

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

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

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

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

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.

 

April 22, 2010

Slept for Many Hours

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Mary Ann went to bed at about 9pm last night.  Once she settled, she did not get up until 12:15pm today.  That is fifteen hours straight.  When I went to the bedside commode to clean it today, it had not been used at all.  She was not up even once.

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

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

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

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

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

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

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

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

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

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

 

April 21, 2010

Tired, Frustrated and Very Grateful

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It started again last night.  This morning she was up at about 6am and hopelessly confused.  It was 4pm pill time (there never has been such a thing); she needed to make hamburger BBQ; those were the most lucid of the first words this morning.

I got her back in bed so that I could take a shower and get dressed to prepare for the 7:30am Spiritual Formation group that meets at our house.  As soon as I got in the shower, she started yelling for me.  I got out to see what had happened, and she just wanted to know where I was.  The shower is in the bathroom right next to her bed.

Moments later, she needed to go to the bathroom.  She had been to the bathroom just before I went in to take a shower.  It was tough just to get the preparations in for the Wednesday morning group, since she was in her streaming delusion/dream/hallucination mode.

I have been especially tired the last few days.  Today, I have not felt good at all.  Here is where the grateful dimension kicks in.  Volunteer Maureen arrived at 7:25am to spend a couple of hours with Mary Ann.  as always, she had a meal for the freezer, a couple dozen homemade cookies, Blueberry muffins and three very tasty Macaroons.

Maureen gave Mary Ann her yogurt and a muffin and kept her occupied while I spent a couple of very spiritually therapeutic couple of hours in the Spiritual Formation group on the back deck.

Bath Aide Zandra came and took Mary Ann through her morning prep for the day.  Parish Nurse Margaret arrived just as Maureen was due to leave.  Margaret spent the next two hours with Mary Ann while I did some morning chores.  During that time I gave Mary Ann her pills.  Margaret checked Mary Ann’s blood pressure (122/80) and her pulse (60).  I was reassured by the normal pulse after yesterday’s unusually rapid heart beat.   The BP would be great for anyone else, but low for her.  She had already done some fainting this morning.

Mary Ann settled into putting her head down on the table in front of her as she sat in her spot in front of the television.  During this same time, Kristie, who does the monthly cleaning, came and started her work.  Part of my chores on this day is to do the pre-Kristie cleaning up so that she can get to all the places that need cleaning.

I headed off for a short time to squeeze in a couple of errands.  At 11:30am Volunteer Doris arrived.  I got Mary Ann’s lunch.  She could hardly keep her head up.  Her nose was almost touching the plate.  She finally let me help get the food to her mouth.  She did not want to go in and lie down, so I moved her to her spot where she resumed resting with her head down.  I remained at the house, since Doris needs help moving Mary Ann.  After a while I was able to get Mary Ann to lie down in bed for a nap.  I set up the monitor so that Doris could let me know if help was needed.  That allowed me to read emails for a while, do a couple of household tasks and sit for a few moments on the deck.

Then Tom from our pest control service arrived to do his quarterly task.  While he was  here Volunteer Scheduler Mary came to spend two and a half hours with Mary Ann.  She brought Lasagna and bread for supper, along with shortcake, strawberries and ice cream.  There was also a large container of Mary Ann’s favorite, Ambrosia Salad.  During the time Mary was here, we spent some time talking about her ministry as a trained (two years) Lay Assistant at the congregation from which I retired.  I spent some time on the deck and then headed out to sit at Cedarcrest and try to nap while sitting in the van.

After I returned and Mary left, Mary Ann was still sleeping.  Neighbor, good friend and former Parishioner Ann stopped by to see the new sun room and waterfall as well as visit for a bit. After Ann left, I decided to try to nap a bit myself.  That lasted only a few minutes before Mary Ann finally stirred.

It was another very busy Wednesday.  I am profoundly grateful for so many Volunteers spending time with Mary Ann today.  Any times I interacted with her, she was still in the streaming hallucination/delusion/dream mode.  It helped to have others here.  Since she slept so much, it would have been doable, but it was a comfort not to be alone in the task.  I had a chance to enjoy talking with those who came, making my day better.  I need and love times of solitude, but I need human interaction just as much.  The Mallards came by for a while today also, filling my need for entertaining wildlife.

We had the wonderful lasagna meal and dessert.  I spent time just sitting with Mary Ann as she watched an hour or two of television.  Then she decided to go to bed.  After a day of sleeping, I am not sure it will be a very restful night, but I certainly need one.  I absolutely cannot allow whatever it is that is making me feel bad physically develop into anything that interferes with the functioning of our system.  The only power I have is to try to get some rest.  Otherwise, I am fully aware that I have very little to say about what does or does not develop.

I am trying to finish this earlier than usual tonight, so that I can allow more time for rest.  How much rest I actually get will depend on how Mary Ann’s night goes.

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.

 

April 21, 2010

New Twist – Hopefully Nothing Significant

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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Mary Ann lay down after lunch for a nap.  The moment she is settled in bed, I start doing tasks inside or outside, confident that she is very likely to sleep for a couple of hours without stirring.  Not so this afternoon.

When I came back in, her eyes were open.  She said that her esophagus hurt and she needed a Tums.  It seemed to be hurting more than usual.  She used the bathroom and had a fainting spell immediately after I put the Tums in her mouth.

The pattern we use is that Tums comes first.  If it does not help, a Nitro pill comes next.  If that hasn’t eliminated the pain in five to ten minutes, another Nitro pill is taken.  She has to be lying down for that since Nitro pills lower blood pressure dramatically.  Since she had just fainted, it was apparent that her BP was already fairly low.

Hospice Nurse Emily came to the door for her weekly visit as we were waiting for the Tums to work.  Mary Ann said that it seemed to be helping.  The new twist was that when Emily checked her oxygen saturation level (98%, very good) and heart rate with the finger monitor, Mary Ann’s heart rate was 111, almost double her normal, which is about 59 or 60.  Nurse Emily took her blood pressure, which was in a reasonable range for Mary Ann, 150/96.  It is always a puzzle that it can be that high just minutes after she has fainted from a drop in blood pressure.  She had stood up and sat down when the fainting happened, but she was lying down when Emily took her BP. Blood pressure usually measures higher when lying down than when sitting or standing for anyone..

Nurse Emily measured her heart rate a second time, and it had come down to 85.  After Emily left, Mary Ann said it was hurting again.  I gave her a nitro pill.  Her heart rate was over a hundred.  After a little less than ten minutes, her chest/esophagus was still hurting.  I gave her a second Nitro pill.  About ten minutes later I checked again.  By that time she said the pain had subsided.  I took her blood pressure at that time and it was 110/50.  As expected, the nitroglycerin had lowered her BP.

The concern, of course, is an unexplained increase in her resting heart rate.  I just pulled out the three pages of information on Cipro.  One of the bullet points under “Other serious side effects of Cipro include” is “Serious heart rhythm changes”.   The next sentence is, “Tell your healthcare provider right away if you have a change in your heart beat (a fast or irregular heartbeat), or if you faint.”  Okay, Nurse Emily was here when the heartrate was almost double her normal.  It did not seem to strike her as significant.  As is so with anyone who has been a Caregiver for a while, I never give away responsibilty for Mary Ann’s medical care.  I will check with Mary Ann periodically tomorrow.  If there is any discomfort I will check her pulse.  If it is racing, I will call Hospice to check with their doctor about how to proceed.  Since Mary Ann’s and our intention is that she not be resuscitated (those words are hard to see appear on this page as I write), we have to be thoughtful in how we proceed.  (Mary Ann has not yet had a chance to sign the DNR form in front of a non-family witness yet — not sure whether procrastination or denial on my part.)

She has been fine the rest of the day and is now in bed, hopefully, for the night.  She went to Bible study this morning and, according to her report, stayed awake.  She had lamented when she first got up this morning that she sleeps so much during the group time, that it seemed fruitless to attend.  She then admitted that getting out with people was good, and that was the only regular time with others she had.

I had an especially good time during the Bible Study,  I had a chance to talk for a time with a cluster of the staff with whom I worked at the church from which I retired.  I realize just how much I miss having those folks to talk with.  When there was some experience or encounter, one of little consequence in the grand scheme of things, it was nice to have some place to report whatever it was.

I headed over to the coffee shop (of course, PT’s) and ran into one of the owners I have known for many years.  As usual, he had just returned from another part of the world where coffee is grown, this time somewhere on the continent of Africa.  He is always entertaining.  I followed that with a visit to the Wild Bird House.  There I could review the experience with the Mallards yesterday and hear some stories about rahabbing ducks.  I didn’t realize that bullfrogs ate ducklings — not a pleasant thought, but interesting to know. Melody rehabs the birds, and Todd is a sort of Renaissance man, who plays in a group and teaches guitar, creates websites from scratch, and builds decks, as well as running the store with Melody. He and I talked deck issues — my bowing crosspiece.

We headed for the store, loaded the car with gas and the back seat with half gallons of ice cream, as well as Mary Ann’s Sesame Chicken dinner.  That is the lunch following which the problems began.  She had the same for supper without any discomfort, at least yet.

This afternoon, while Mary Ann was having problems and then napped, I took on the task of taking up the Snap-Lock mesh flooring in the bathroom to spread out on the driveway, spray with a fungicide, clean with a broom and bathroom cleaner wih bleach in it.  It is  a dreaded job.  The ceramic tile in the bathroom beneath the mesh gets the same treatment.  Tomorrow, Kristie will come and do her monthly cleaning.  This time she will also clean the ceramic tile now that it is uncovered. (The mesh is on the floor to avoid Mary Ann being hurt badly when she falls.)

This evening, Volunteer Jolene came to stay with Mary Ann.  I used the time to do a few things here at the house and then headed to Dairy Queen to take advantage of this week’s special — buy any size Blizzard at full price and get the same or smaller sized second Blizzard for 25 cents.  They are celebrating the 25th birthday of the Blizzard.  We are happy to help them celebrate.  After eating the Blizzards, I headed out again to check on getting a roll shade for the east end of the deck.

It was a full day for both of us. The central concern is Mary Ann’s heart rate.  Since she had a number of silent heart attacks that we missed seven or eight years ago, I do not take this lightly.  Those heart attacks were masked by what we thought was esophagus pain.  It certainly never gets dull around here.

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.

 

April 20, 2010

Infection Diagnosed

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
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I have to wonder how long this has been going on.  I wondered about it right after coming home from the hospital last November.  There were none of the usual symptoms that were different from the symptoms of the problems already diagnosed and being treated.  It seems unlikely to me that such an infection could have been going on since November, although there is a chronic version of this diagnosis.

Hospice Nurse Emily phoned shortly after lunch time today to report that Mary Ann’s urine had tested positive for a Urinary Tract Infection [UTI].  In fact it is apparently a fairly serious one.  She reported that the doctor had insisted that Mary Ann manage to get in both the morning and evening doses yet today.  We have now done so and Mary Ann is in bed.

The medication is an anti-biotic called Cipro.  It is a strong anti-biotic whose sheets of warnings and side-effects (three pages of small print) read like a Stephen King novel.  The good news is that the Hospice doctor has a current list of all Mary Ann’s meds and a chart that includes all her medical problems.  The Hospice Staff have regular Team meetings on each patient.  It is a fairly small Hospice organization, serving only about thirty patients.  We regularly get a copy of the Team meetings.  Each report includes hand-written notes by each member of the team, including the doctor.

It certainly is a challenge to discern the signs of a UTI when every one of them matches something that is normal for someone with Parkinson’s Disease, Heart Disease, Parkinson’s Disease Dementia (a Dementia with Lewy Bodies), Hypertension, Orthostatic Hypotension, Chronic Kidney Disease, Hypothyroidsim, Urinary and Bowel Incontinence, a stroke victim who has also had a life-threatening bout with Pneumonia.

Here is an interesting item on the list of those symptoms that are often indicators of a Urinary Tract Infection:  “Mental changes or confusion (in the elderly, these symptoms often are the only signs of a UTI).”  Imagine trying to catch that symptom in someone with a Lewy Body Dementia that has as its central symptom, mental confusion that comes and goes.

On the Medline Plus web site from which I got the information in this post there is a list circumstances that increase the likelihood of getting a UTI.

The following also increase your chances of developing a UTI:

  • Diabetes
  • Advanced age (especially people in nursing homes)
  • Problems emptying your bladder (urinary retention) because of brain or nerve disorders
  • A tube called a urinary catheter inserted into your urinary tract
  • Bowel Incontinence
  • Enlarged Prostate, narrow urethra, or anything that blocks the flow of urine
  • Kidney stones
  • Staying still (immobile) for a long period of time (for example, while you are recovering from a hip fracture)
  • Pregnancy

Mary Ann is not pregnant, does not have a prostate gland or kidney stones, nor is she diabetic, but all the rest fit to one degree or another.

I will admit that this diagnosis seems like good news in the sense that it provides a glimmer of hope for some positive change.  Mary Ann declined pretty dramatically after her hospital stay (during which a catheter was used).  It would be wonderful to be surprised by improvements coming with progress in treating the UTI.

Mary Ann (and I) got a pretty good night’s sleep last night.  She seemed to be doing somewhat better today but still had some confusion periodically.  There was a little more of the fainting and bowel activity.  She had a nap of a couple of hours during the mid-day.

We had a special treat today.  This afternoon Pastor Mike and Judy came to visit for a few hours.  They are warm and caring, as well as strong and intelligent people who have made their mark for great good in a central city area in Kansas City, Kansas that has had all the struggles that often come with older city neighborhoods.  I have tremendous respect for them as they have stayed engaged with and present in that community for decades.  Without fanfare or tangible rewards they have continued to serve in creative ways people sometimes gasping for air just to keep from drowning in a sea of failed attempts at trying to get by on their own.

We have known Mike and Judy since the early 1970’s.  I was a few years ahead of Mike at the Seminary we both attended in St. Louis.  Mary Ann and I have  listed Mike as the requested preacher at our funerals.  He and Judy have known Mary Ann since before the Parkinson’s.  As well as the personal fondness we have for them, they share with us an understanding of church that is deeply rooted in some core faith issues.  We have great conversations.  Judy especially made a point of talking with Mary Ann one on one, so that Mary Ann’s thoughts and words were not lost in the energetic talking of three others.

After spending time at the dining room table talking with Mike and Judy, we moved on to the deck.  It was a glorious day here, about 70 degrees and abundant sunshine.  As we sat on the deck, the pair of Mallard Ducks wandered back and forth, in and out of the waterfall, munching at the ground level platform feeder a few times.  They just sort of hung out with us, maybe twenty feet away.  The birds were singing their spring songs probably meant to impress some potential or current mate.  At one point a black Grackle (with that shiny deep blue head), Blue Jay, Cardinal and bright yellow Goldfinch were in view at the same time in the branches or on the ground in the immediate area.  A couple of Robins were nearby also, as well as the Mallards.  It always strikes me that colors no designer in his/her right mind would put together in the same space, work very well when in proximity in a natural setting. It would seem there might be some other artist at work weaving colors together.

Yesterday, our system here seemed on the verge of becoming impossible to sustain.  A good night’s sleep, some time during Mary Ann’s nap to get a few sort of recreational chores done (filling bird feeders, more weeding in the waterfall area), relaxed time visiting with good friends, has pulled us from the verge of impossible back to possible.  Since we live in a fairly small space between possible and impossible, I will not venture a guess as to where we will be tomorrow.  We will deal with that when tomorrow becomes today. Speaking of which — it is time to go to bed.

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.

 

April 19, 2010

Wasted and Worn Out.

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
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One night and day like this are about all I am up to.  Last night the hallucinations fired up.  When I say that we got less than half a night’s sleep, I mean that if the night were to be sliced down the middle, lengthwise, there was sleep that totaled less than half the available time.  In other words, there was about twenty minutes out of every hour that may have included some sleep, at least for me.  As I write that, I suspect that I am exaggerating some.  I doubt there there was twenty minutes in any hour that was not spent trying to explain away hallucinations and convince her to lie down and go to sleep.

Once after I had pointed to her quilt on the wall and the family pictures on two other walls in the bedroom.  She stared me in the face and said in a very belligerent tone: “All right, now just take me home!”   At one point she was crying uncontrollably during a dream.  Almost immediately after I hit the publish button on last night’s post, she got up and then fell down in the corner of the bedroom. When I got there she was talking utter gibberish in a loud voice like the sounds she makes sometimes when she is starting to faint.  They are awful sounds.  They may have been some sort of wailing that was part of a dream that was going on when she fell.  I was afraid she had had a stroke, but when I got her up, she seemed to have awakened from whatever form of dream she was having.  She was still not at all lucid.

After having clear and healthy looking urine all day, up until the time she went to bed, she started showing some blood in her urine. I phoned Hospice, grateful to have someone to call.  The Hospice Nurse said she would bring over a kit to gather urine so that she could be tested for a urinary tract infection [UTI].  We agreed that it would be okay to wait until morning to bring it over.

After an entire night of getting up and down again and again, trying to get her to settle, she got up very early.  I had set the alarm early so that I could get a shower in before the nurse came.  Mary Ann was up before the alarm went off.  She was in hallucination streaming mode.  I simply cannot endure that for very long.  She hops up immediately after sitting down, needing to go somewhere, not always sure where.  She was in fainting mode, so each time she insisted on getting up and walking somewhere, she ended up on the floor.  I was with her each time, so I had to let her down to the floor, sometimes dead weight, so that she would not hurt herself.  Then I got the transfer chair beside her, pulled her up on to her feet and back into the chair.  As soon as I moved her back to her spot, she would pop up and the procedure would start again.  I could not begin to count how many times that happened.

I did manage to get her fed, no small task since she was hallucinating and paying attention or talking to whatever or whomever she was seeing.  I am utterly helpless to do anything about problems created by people or objects that have no corporeal presence.  They just don’t exist outside of Mary Ann’s plaque laden brain cells.  Whether or not they are real, they are so to Mary Ann.  They elicit the full range of feeling and frustration and fear that they would if they actually were real.

I had to sit two or three feet away from her every minute, or she would get up and move someplace where she could be hurt.  I could not so much as get in a fifteen minute shower.  The Hospice Nurse had to be late, since a client had died and she had been up with them all night.  I followed Mary Ann around, picking her up again and again for two or three hours, until just minutes before Nurse Emily arrived when Mary Ann simply crashed and had to go back to bed.

Nurse Emily dropped off the urine gathering kit for me to use later, but she was also willing to stay for fifteen minutes extra so that I could take a shower.  During that time Volunteer Edie came to stay with Mary Ann.  As always Edie brought lunch. This time it was a favorite of both Mary Ann and me, a Greek style meatball and veggie soup.  Mary Ann slept about three hours, beginning before Nurse Emily and Volunteer Edie arrived and ending just after Edie left.

We ate lunch, and afterward, Mary Ann started the same pattern as the one that had almost driven me crazy (short drive) before her nap.  A number of times when she popped up in the afternoon, she was irritated that I didn’t get her into the car to go to the Evening Service at Church.  The service is at 6pm (ten minutes away from our house) and she started popping up around 2:30pm.

The afternoon pop-ups included four or five of them beginning a trek to the bathroom, where the fainting and intestinal production ending up in the wrong place happened a number of times.

We did manage to get to the Evening Service, but I was wasted and worn out, and Mary Ann was not able to participate much in the service. There is enough structure to the service, that we could at least make it through the service.  Church and supper did not change the pattern.  We ate supper, Mary Ann sticking her spoon in the Pepsi and her napkin in the soup, often seeming to try to eat the napkin with the spoon.  Sleepless nights wreak havoc on her dementia.

I won’t deny that I had been hoping all afternoon and evening that she would go to sleep again.  She did not.  Now finally she is in bed.  She has been continuing to pop up and down, sometimes thinking it is morning.  I have had to talk her out of getting up and dressed.  I don’t know that I have another night like the last one in me.  I guess I don’t have a choice.

What I have written may make no sense, I am so wasted that my eyes keep shutting.  I need to get to bed. (Too tired to edit. It goes out errors and all.)  [I am adding this sentence to indicate that I have now edited this post, and Mary Ann and I did get some sleep last night.]

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.

 

April 17, 2010

Good Days Come to an End.

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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The short string of good days ended, beginning last night.  The remote control sitting two feet from her was a candy bar.  That and some other comments hinted at what was coming.  Last night she was up at least once an hour throughout the night.  She got up early this morning.

As I sat next to her in the living room she spoke with a very rational and clear voice asking about some things.  She asked if the blond young man who had come by was Daughter Lisa’s boy friend.  There was no blond young man, and Lisa, husband Denis and the girls in Kentucky are absolutely secure.  No amount of talking by me or Lisa has managed to remove that from her repertoire of hallucination/dreams/delusions.

She wanted to be sure to get the Tom Mix Western back to the library.  We haven’t been to the library and certainly have never taken out a Tom Mix book.  He was a western hero in the movies from before Mary Ann and I were born.

She wanted to make a list of things to send to the kids, all she could think of was a blue tennis shoe for a baby she concluded they had left here.  She looked outside that decided that there had been an avalanch.  I asked if she was referring to the waterfall.  She said it was under the waterfall.  She was struck by the orange-green tree in bloom in the back yard.  We do have a Tulip Poplar that has orange and green blossoms early in the summer.  There were barely any leaves on the tree yet.  Where she was looking when she said that was not where that tree is located.

She decided that the eyelets on my hiking boots (which I wear every day now that I am retired) were jingle bells.  She tried to make them jingle but they would not work.  She told me in that matter of fact voice that her oldest Brother’s widow had changed her last name, having married someone whose name was new to me.  I am confirming that such a thing has not happened.

We talked for a while about the fact that I knew the things she had said not to be true outside of her thinking and dreaming.  She said there was no reason that I would lie to her about it, espeicially about our Daughter.  She said she just felt that people were keeping things from her.  I explained that all the folks I read about online shared that their spouses suffering from the disease that she had talked the same way about things.

I recognize that telling her it is the disease is not going to convince her that the dreams/hallucinations/delusions are not real.  I just want to be consistently telling her the truth as I understand it since sometimes she is lucid and seems to understand that they are not real.

She was not up for long this morning before wanting to lie down.  She slept for over five hours.  I knew that I should insist on her getting up periodically to go to the bathroom, but she seemed unable, certainly unwilling to get up at the two hour intervals at which I gave her a pill.  There was bedding to be washed and pj bottoms to be washed.

She finally got up to eat a late lunch around 4pm.  We were invited to head to Neighbors Carol and Eddie’s house for ice cream and goodies.  I thought we could try.  Mary Ann wanted to do it.  She was having trouble with hallucinations as well as trouble sitting up without fainting.  I asked her again, and she insisted that she was all right. I called to say we would be coming over in about an hour.

Immediately after doing so, she moved to her spot in front of the television and her head went down on the little table with the pillow.  After a bit the deadly combination of fainting and intestinal activity began.  I was able to get to the phone to cancel just before it began in earnest.  Gratefully, it did not last as long as it had that last and most difficult Saturday evening.  As always, it was very demanding physically.  It has to be hard on her, but she remembers very little of it.

She is in bed, but seems to be in the sort of mode that is likely to result in lots of night time activity.  That remains to be seen.

I spent the time she was napping in deck therapy and more sunflower seedling removal.  I reread the article from Weavings that I read yesterday.  I also got the latest newsletter from a nearby Spiritual Formation retreat center called Shantivanam.  The newsletter has a short series of segments for meditation.  The birds were fairly active again.  By the way, the crazy Robin returned this morning to challenge his reflection in the lower window on the deck.  They had quite a battle.  I am not sure who won, but he finally left after a half hour or so.

A few minutes ago, Mary Ann needed a commode trip and asked if the people were settled down and in bed.  I just couldn’t bring myself to follow the general wisdom and just say yes.  I told her that while I could go along with the hallucinations, I wanted her to know that I would always tell her the truth whether she wanted to hear it or not.  I told her that there are no other people here.  It is just the two of us, and we are in this together.  Whether it is the best way to respond or not, it is the one I have chosen.

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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