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January 31, 2010

Craziness Continues

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And so the ride goes on! 

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.

 

January 2, 2010

Happy New Year 2010!

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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Tired or not, it is a beautiful, frigid, but bright and sunny morning — a good way to start a new year.  I would like it to be on account of raucous partying, but this tired morning comes after attending to needs that continued until that midnight kiss last night. I finished editing last night’s post and got to bed at about 1pm.  Then every hour, on the hour, we were up with the usual, including two snacks, one at 3pm and one at 4pm. I should have known that a large bowl of ice cream would not suffice for supper.  That is all she was willing to eat — other than the four crackers and the handful of chex mix with a little Asti Spumanti at 8pm. The 2am and 5am activities were commode related.

Actually the 6am commode trip was at 6:20am, breaking the once an hour on the hour cycle.  At 7am, Mary Ann was up for breakfast and pills.  After an hour of watching television, she is now back in bed.  I, however, am wide awake and sitting here beginning this post!  I will continue later in the day.

It is about 3pm.  Mary Ann had a two and a half hour nap, then got up and ate lunch.  She has been watching television while I worked on a Christmas card list for this year or next.  Remember, it is the twelve days of Christmas.  I still have five days to go! 

Mary Ann changed the channel fifteen minutes before the end of the program.  I watched the end of it in the kitchen.  Just as it ended she got up and walked toward the kitchen, I presume to see what I was doing.  I came out to meet her and took hold of her to support her, then asked where she wanted to go.  We walked around the dining room table, and when we got to the other side, she asked where Pete was.  I reminded her that I am Pete, and she recognized me at the same time. 

Today she has been pretty disconnected with lots of little hallucinations.  At her request I gave her a dish of ice cream after lunch, and at one point she asked if the other one was mine.  She was seeing two dishes of ice cream in front of her.  Not realizing that the person helping her walk was me may have been a Capgras Delusion.  That is the delusion that a loved one has been replaced by an imposter.  It happened so quickly that it may not qualify as Capgras Syndrome.  A number of those in the online Caregiver Spouses of those with Lewy Body Dementia have to deal with Loved Ones who are experiencing Capgras Delusions.  The bad news about this disease is that it is a roller coaster ride with some scary dips.  The good news is that sometimes there great vistas on the peaks in the ride.  The goal is just to hang on for dear life!

It is evening now.  There was a visit by a good friend of Mary Ann’s.  She brought a bag of Christmas goodies.  Mary Ann did not really participate in the discussion.  I probably should have left the room for a while to see if they could converse one on one.  Today has been such a disconnected day for Mary Ann, I did not think she would be able to respond.  In retrospect, I should have given them a little time to at least allow the possibility that Mary Ann might respond. 

She went to bed at about 7pm.  I will give her the bed time cluster of pills in a few minutes, about 8:30pm.  That is the usual time she takes them even if she has lain down for the night before then.  A couple of the night time pills have sleepiness as a side effect. 

As I have continued the online Ignatian retreat, the focus now is remembering events in my adult life and their impact, any gifts they may have given, gifts that have helped shape who I am becoming. 

One event of monumental significance was the day the diagnosis of Parkinson’s was received.  I had moved to Oklahoma City ahead of Mary Ann and the kids so that each could finish at their respective schools, one graduating from high school and the othercompleting the Eighth Grade in an eight grade school.  I left in February to begin serving a congregation there and the family came at the beginning of June. 

While everything was as welcoming as it could be in the new parish, it was just about the toughest time in my life.  It was equally tough for Mary Ann and the kids.  Just the separation was almost more than I could bear.  I had not realized fully just how important Mary Ann and the kids were to me until that moment I watched the plane take off from the Oklahoma City airport after a visit.  I could not even tolerate the thought of life without the three of them. 

During those five months, Lisa had the added pain of dealing with the murder of the Principal of the tiny Lutheran High School she was attending.  His Daughter was Lisa’s best friend.  He had been a great support for Lisa during her years at the Lutheran High. 

Micah had developed close relationships with his classmates at the large Catholic Parochial school he attended from the Fifth Grade year through Eighth Grade Graduation.  He was chosen by his classmates to speak at Graduation.  The prospect of leaving those friends behind was tough on him. 

It was that March that the phone call came.  Mary Ann phoned me in OKC with the news that she had just been diagnosed with Parkinson’s Disease.  She had to deal with that life-shattering news by herself without my support.  I had to deal with it while among wonderful people with whom I had not yet developed any history.  Mary Ann was not willing to share the news with anyone else, her or my parents, her or my siblings, her lifelong friends, the people in the parish with whom we had just spent fifteen years building relationship.  For the next five years, that secret was to be kept from all but two or three people other than the kids.   We honored Mary Ann’s request, but it took a toll on all of us, especially when the symptoms became noticeable.

It is hard to put into words the impact that the Parkinson’s has had on our lives.  There is no way to even begin to imagine what our lives would have been like without it.  It is actually a waste of time to try to do so.  Time is too precious.  It is needed to live the life we have as effectively and meaningfully as possible.  We can process the impact of the Parkinson’s and assess its role in who each of us has become.  We have grown and learned more than could possibly be written in one blog entry. 

There is a level of maturity and wisdom that our children have come to have through dealing with their Mom’s Parkinson’s.  Earlier posts include sections they have written, reflecting on their experience in dealing with the Parkinson’s.  I am a far better and more effective pastor because of it.  Mary Ann has wonderful relationships with dozens of people directly due to the Parkinson’s.

While I am grateful for all we have learned from Mary Ann’s Parkinson’s, we would gladly have read a book on it if we could have learned those things without the Parkinson’s.   

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.

 

December 31, 2009

Wednesday’s Open Door Policy

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength | Tags: , , , , , , , , , , , , , |
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Shortly before 7:30am, Duane dropped off Eva at the house so that she could spend a couple of hours with Mary Ann.  Then came Shari and Edie for the Spiritual Formation Group that meets on the deck or in the downstairs family room.  Since the deck is covered with snow, it was, of course, a downstairs morning.  All is well whichever place as long as the coffee is made. 

A little later, Zandra came to give Mary Ann her shower and wash and dry her hair.  About an hour after they all had left, Kristie came to do the once a month cleaning of the house. 

Actually, we have an open door policy most of the time.  We have been very private people, especially Mary Ann.  All that changed in the last decade.  Since getting to the door is not always an option when someone rings the bell,  those who have come regularly to spend time with Mary Ann know that they may just need to walk in, if no one answers the door.  They walk in and announce themselves so that we will know that they have arrived.  We have become quite accustomed to the open door policy. 

While we did not get out today, the many visitors provided an antidote to any sense of isolation in our little cabin.  No cabin fever today.

Mary Ann did nap for a couple of hours during the day.  That allowed me to get some things done at the computer.  I did not spend time on the online retreat until she went to bed tonight. 

These two days looking at mental snapshots of events during the Teen/Young Adult years has again been thought provoking.  The Spiritual Formation Group discussion blended with the matter of receiving gifts from experiences, good or bad. 

I thought about last night’s post and the role singing played in my life.  While the high school and college years provided much affirmation as I participated in leadership roles, sometimes doing solo work as well as singing in ensembles, it was different at the Seminary.  Music  was still a dominant feature.  There was a three week choir tour that took us (Mary Ann and me) to England, Holland, Germany, Austria, Switzerland and Belgium.  There were powerful, moving worship experiences singing in the chant choir and performing Bach’s St. John Passion. 

My ego was taken down a few notches in the Seminary Years.  Illusions about my ability were shattered as I stood next to a tenor who had a Master’s Degree in Vocal Music from Indiana University.  I realized that I had been measuring my ability against non-music majors.  Louie provided a needed perspective. 

My injured ego came with me as I continued to sing in the Chant Choir at the Seminary, and the Cantata Choir that included people from the city.    The gift that came from those years was a more realistic view of my abilities.  While the truth can be painful, it is better to make friends with the truth than spend much time with pretense.  Another gift was an appreciation of being a part of something greater than one person.  It became less about me and more about the music and its impact on those listening. 

That shift in focus seems to me to have helped in the transition from a high profile role as Senior Pastor of a large and vibrant congregation, to a lower profile role of being the full time Caregiver to someone who needs that care, someone to whom I am fully committed.  

Those years included the joy that December 18, 1965, when Mary Ann and I were married in our home congregation in Northern, Illinois.  We had both had finals at our respective schools in St. Louis the Friday before the Saturday we were married in Aurora, Illinois, outside of Chicago. 

Those years included the death of Mary Ann’s Dad, just two or three weeks after the wedding.  He had walked Mary Ann down the aisle. 

The Seminary years included a year at a church doing an Internship, called a Vicarage.  It was the 60’s, including the three assasinations.  I became disillusioned with the institutional church.  I refused to accept a Call to a parish on the day my classmates all received theirs a few weeks before graduation.  Those were dark days.  I didn’t know what to tell Mary Ann, since I didn’t know what to do.  Lisa was due to be born about a month after graduation. 

Lisa was born on the Fourth of July in 1969.  She brought light to those dark days.  I can remember holding her as we watched the moon landing, wondering what it would be in store for her as we moved into the space age.  I remember her Baptism in the Seminary Tower’s Baptismal font, with water from the Jordan that John Damm had added before doing the Baptism. 

Out of that time emerged an opportunity to teach at Concordia Lutheran High School in Ft. Wayne, Indiana (where I had spent two of my college years and my Internship).  It was a school of some 900 students.  There were some volatile times there, which will be for a future post. 

Those years were a roller coaster of experience in most every way.  They provided a lifetime worth of highs and lows.  And the ride was just beginning.   The gift from those years came in the form of the recognition that most anything could happen, and with the Lord’s help, we would survive.  Little did we know then, just how important that learning would be. 

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.

 

December 26, 2009

Blue Christmas

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength | Tags: , , , , , , , , , , , , , , |
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A church in our area had a Blue Christmas.service scheduled this season. The church I served as Senior Pastor until I retired has had a couple of Blue Christmas services the two years before this one.  The holiday season is tough on folks whose situation does not match the wonderful loving family scenes portrayed in movies, television programs and the feel good stories that come at this time of the year.

There is, of course, nothing wrong with all the happy endings and sentimental stories that fill the media at Christmas time.  What is wrong for some is that what they see is not what they experience, or have any realistic hope of experiencing.

This Christmas Day did not seem very celebrative.  Mary Ann admitted on the phone with our Daughter to being sad.  I guess in that sense, we had a taste of what it means to have a Blue Christmas.  Before anyone who reads this gets concerned, we had a great family Christmas celebration last Sunday.  Our visiting children had to return home a little sooner than planned to avoid being trapped by the weather.

We were alone today.  We were trapped in the house yesterday and today due to the blowing snow, providing large drifts and sometimes impassable streets.  We will probably be here tomorrow also.  I had a bowl of cereal and Mary Ann a left over half-sandwich from yesterday for lunch.  She had frozen pizza tonight and I had the last of some leftovers.  Not much of a Christmas Day celebration.  We do have lots of snacks and sweets to satisfy our need for munchies and our sweet tooth.

There was great music available on the radio, but Mary Ann’s electronic medium of choice is the television.  I listened to some meaningful (to me) worship music while she was napping.  Music does not seem to hold her interest at this point.  There was very little on television that both fit her taste and lifted our spirits.  It was mostly silliness or violence.

I can understand why the expectation of intense joy and warm feelings can make it a very tough time of the year when the reality is so far from the expectations.  Reality is not so simple.  It is far more complex than just all warmth and happiness or all struggle and pain. It is most often a measure each mixed together to produce life as it really is.  The challenge is to keep it all in perspective, enjoy the wonderful moments, deal with the not so wonderful moments, and accept the value of each in creating the history of our lives.  Our past has shaped us and our choices as they continue to come day by day form us into who we are becoming. This Blue Christmas is just one day in the journey.

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.

 

December 23, 2009

Nap Day, Food Gifts and Wii

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , |
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I forgot to put the clothes in the dryer and it is well past midnight.  I thought I was going to just write a couple of sentences of update, but I don’t want to leave wet clothes in the washer overnight.  There will be items that need to come out of the dryer immediately and hung on hangers to keep from getting wrinkled while sitting overnight in the dryer. I will have time to write more than a short update.

When I was a child, I remember routinely finding a plastic bag of wet clothes in the refrigerator to avoid mildew until they could be ironed. The rest hung outside until dry — even in freezing weather.  In rainy or snowy weather they would be hung in the basement to dry.  By the way, Mom ironed everything, of course shirts and blouses and pants and skirts, but also sheets, pillow cases, handkerchiefs, T-shirts and underwear.  I am unable to run the iron.  It is an unfortunate disability that has no cure.

Today Mary Ann got up early and just headed out the door of the bedroom.  By the time she reached the door, I woke from REM sleep containing one of those pastor dreams in which there is a service that I am leading and I am not prepared, or something that I need can’t be found, or I have lost my place in the service book.  I guess I should thank her for ending the dream, but I certainly was not done sleeping.

I moved quickly and got her seated so that I could put on something and take her out for food and pills.  Almost immediately after eating, she agreed to lie down in bed for a while so that I could get a little more sleep.  She ended up sleeping for close to three hours.  I got about an hour and a half more of sleep.

After she got up, I gave her a sandwich for lunch.  Then came some reluctant intestinal activity, needing my assistance.  When that was done, she was very tired again.  She had fainted a couple of times before and after lunch.  She slept again, for about an hour and a half. Oddly, when she awoke, she was convinced that it was early in the morning.  It was actually after three in the afternoon.  She didn’t seem to believe me at first.  It took quite a while to finally convince her that it was not early in the day.

While she was napping Arlene came over with a plate full of fudge and candy she had made.  Wow!  Is that stuff good!  Later Glenn and Margaret brought over a plate of goodies.  They also are very good.  Yesterday afternoon, Don had brought over freshly smoked salmon and bread.  In each case we were the recipients of a wonderful gift of food and, in addition, some pleasant conversation — especially enjoyed by this retired pastor suffering from Diminished Conversation Opportunity Syndrome.

This evening our Kids from Kentucky (staying with us) took us out for an Anniversary Dinner.  Our little five year old Granddaughter, Ashlyn, was diagnosed with a Strep infection this morning, so she was not a happy camper today.  She was feeling well enough for us to go to Famous Dave’s and enjoy a nice meal.  I ran into one of the young people from the congregation I served here, reminding me just how much working with Youth meant to me over the years. (The majority of my 407 FaceBook Friends are Youth.)  Juli is a beautiful young lady inside and outside, with a heart of gold.  Her Mom is one of the Volunteers who stays with Mary Ann.

Dryer is done!  So will this post be done soon.

One interesting sidelight today is that Denis bought a Wii for the family.  They tried it out this afternoon.  They are going to love playing that, especially when they use it on their large screen digital television in the large family room at their house in Kentucky.  We tried to help Mary Ann do some bowling, but the coordination just isn’t there.  I have often thought about how beneficial it might be to have a Wii to help Mary Ann stay active.  She loves games.  I have been waiting for clear evidence that it will actually accomplish the goal.  It is too expensive to buy and then find out it is not helpful.

An update: Daughter-in-Law Rebecca’s Gall Bladder surgery went well today, and she is at home, feeling good (according to the last emailed report).  The email was titled “Weight Loss Program” using the removal of organs as the means.  She is a Corker!

Time to edit and get some rest!

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.

 

December 22, 2009

Family Christmas Celebration

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , |
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On Sunday it was a real joy to have all nine of us in this small immediate family together to eat and talk and open presents.  Each of us will incorporate corporate worship in the our celebration later in the week.  For that day our time was spent celebrating what the Lord has done in our little family. 

I am sure Mary Ann enjoyed the day, even though she headed in for a nap right when our Children and Grandchildren arrived.  After a couple of hours of preparation for the meal, Mary Ann got up to join us for a late lunch.

We now have a spotlessly clean oven!  We were able to reheat the Prime Rib that was “smoked” two days before in the oven that had Honey Crunch Pecan Pie deposits on the bottom to flavor the smoke.  This time there was no smoke!!!  That is especially good since our Son and Daughter-in-Law brought the ingredients for the Triple Fudge Cake they often make for family gatherings.  Yes, they brought ice cream to eat with it.

The directions for the self-cleaning oven made it absolutely clear that all the pools and puddles and burnt patties of stuff on the bottom of the oven needed to be removed before using the self-cleaning function.  I had, of course, figured that out before reading the directions, after having smoked both a pie and a Prime Rib.

Saturday’s preparations for the family gathering and meal on Sunday went reasonably well.  Putting together the grape salad (extremely good), and the cheesy potatoes was not difficult.  The combination of Mary Ann’s napping and a long lunch out in the mid-afternoon pushed the preparations very late in the day.  There were some other household chores.  As a result the present wrapping ended up going until 1:30am, long after Mary Ann had gone to bed.  It is at times like this that I really respect single parents who take care of everything themselves, including all the needs of their children.  It is surprising to discover how fast small and seemingly insignificant tasks can add up to proportions almost impossible for one person to manage.

Again, this is a sexist observation, but nonetheless true for me.  As a male Caregiver, tasks that my Mom did when I was growing up, tasks that Mary Ann did, enjoyed doing and did well, I have found to be very difficult.  They are not necessarily difficult tasks by themselves.  It is the comfort level with doing them that is the problem.  Shopping for Christmas presents, wrapping them, getting and sending Christmas cards, putting out Christmas decorations, as well as food preparation don’t come naturally to me.  They are just uncomfortable enough for me that I come up with all sorts of reasons to postpone dealing with them.  The Christmas cards are still in the unopened boxes sitting in a bag on the floor.  I should be working on that instead of writing this post!

Mary Ann enjoyed the day Sunday, but got very tired late in the afternoon.  There was a much anticipated Choral Eucharist at church last evening at the time we usually worship on Sundays.  It was clear that Mary Ann would not be able to manage the Service.  She was in bed for the night not too long after 6pm, the same time the Service started.

This time there was no option of my leaving Mary Ann at home with the family.  Our Daughter had surgery two weeks ago and could not help Mary Ann physically, Our Son could have helped with her, but he had to take our Daughter-in-Law home since she is having Gall Bladder surgery on Tuesday.  She was also very tired.  As a result, there was no one at the house other than me who could take care of Mary Ann’s personal needs.  I missed the opportunity to enjoy a wonderful worship, our choir and soloists, instrumentalists, bell choir, our Organist-Choirmaster, all of whom are outstanding.   The quality has always been far beyond what would be expected for Volunteers.  It always sounds very professional as well and meaningful Spiritually.  The Christmas celebration has a completely different feel as a retired pastor.  While we will attend church on Christmas Eve, the services with full choir and soloists come too late in the evening for Mary Ann.

Gratefully, what the celebration is about transcends any specific event in that celebration.

The Christmas celebration meal was okay, but the Prime Rib did not go over as well as I had hoped.  The rare look of a good piece of Prime Rib is not appetizing to everyone, especially little ones.  Thank goodness for Kraft Macaroni and Cheese.  Actually, our Son, Micah, and Granddaughter, Chloe, would probably not be alive today if it were not for Kraft Macaroni and Cheese.  Our Daughter, Lisa, found the microwave to be what was needed to get the red out.  She admits to having an aversion to meat that provides any visual evidence that it was ever part of a living animal. 

Today has been a sort of recoup day, with minimal activity.  Mary Ann again needed to crash for a about two and a half hours mid-day today, even though she slept well last night. 

Mary Ann continues to seem less functional and engaged, and more tired than in the recent past.  I am not sure about that since I am with her all the time.  One particularly bright spot was an email from Marlene, one of the Kansas City Crew, who took a picture of us on Friday.  Mary Ann was smiling.  It seems as if it has been an eternity since Mary Ann was caught smiling in a picture.  If I can figure out how to do it, that picture may make in on my FaceBook page. 

It is a very good thing to have our two little Granddaughters here at the house for a few days.  There have been plenty of Grandma and Grandpa hugs to brighten our days.  Our Daughter, Lisa, is deeply caring and her love for her Mom is apparent in everything she syas and does.  She is also a tremendous support to me.  Our Son-in-Law, Denis (yes, spelled with one “n”), is a man of great character, who is willing to do anything he can to help us. 

Whatever our challenges, our Children, their spouses and our Grandchildren provide us with joy beyond measure.

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.

 

December 19, 2009

Cursed by the gods of cooking!!

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , |
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What terrible thing have I done to anger the gods of cooking so??  Here is a quote from last night’s post: “As I have said far too often, I am out of my comfort zone when trying to cook.  That is why the Anniversary Dinner tomorrow is a carry-out special.  It does demand cooking the Prime Rib for an hour, and reheating the side dishes that came with it.  I should be able to handle that much, but who knows how it will come out.”  The last clause was prophetic.

Last night’s post also noted that the Honey Crunch Pecan Pie had sloshed a couple of times leaving pools of surgary filling on the bottom of the stove.  Why do I suspect that everyone reading this who has ever cooked already knows what happened this morning.  Here is the what I brought home from the Brick Oven Restaurant for our Anniversary Celebation dinner with three couples who drove over from Kansas City:  five pounds of Prime Rib, Baby Red Potato Cheese Bake, Tasso Corn Bake (a signature dish), Au Jus, Creamy Horse Radish & Dinner Rolls.

All I had to do was finish cooking the Prime Rib for an hour in the oven and reheat the side dishes in the microwave.  You know what happened when I turned the oven on to preheat it to 275 degrees.  Yes, the smoke started pouring out of the oven vent.  It wasn’t just a little bit of smoke, but thick smoke as in burning sugar.  Again, I had to pull out the sheet entitled “How to Cancel a False Alarm” just in case the smoke detector went off.

It is good that it was not seven degrees with a wind chill outside since I had to open every window in the kitchen, the front door, open the door to the garage (and open the garage door itself).  Of course, I had no choice but to put the Prime Rib into the smoking oven, since there would soon be eight of us sitting at the table intent on eating an Anniversary Dinner. One of the side dishes managed to bubble over in the microwave to add insult to injury.

Then there was the award-winning Honey Crunch Pecan Pie for dessert.  After all the challenges getting it cooked last night, it actually looked pretty good.  And, it would have been perfect if it were called Honey Crunch Pecan Upside Down Cobbler!!! It looked like it was done.  It didn’t jiggle when I moved it.  When I cut it and tried to get a piece out to put on the dessert plate, what ended up on the plate was a dark brown heap of goo with nuts in it and pieces of crust trailing through it. That piece and every one after it came out the same way.

We squirted Redi-Whip (the one that is cream, not oil) on each piece and ate our dessert.  There was some sympathy applause in the form of verbal commnets on how good it was.

I will admit publicly here that twice in the course of getting the rolls heated and in the basket, some of them fell on the floor.  I had just cleaned that floor with my Swiffer Wetjet mop shortly before the Kansas City Crew arrived.  I am sure it was completely sterile.  There were two different witnesses, one to each drop.  They each promised secrecy, each unaware of the other.  Needless to say they were both guys.  We grew up eating dirt on occasion — so what’s the deal?

The good news was that the Prime Rib was spectacular, the side dishes were each distinctive and wonderful tasting.  We had a great conversation, and in spite of looking less than appetizing, the Honey Crunch Pecan Upside Down Cobbler really tasted as good as would be expected for an award-winner.

Will I ever do such a thing again, invite people over for a meal at our house? Unless I can figure out what I did to anger the gods of cooking and atone for my sins, I think not.  Hold it!!! Our Son and Daughter, their Spouses and our Grandchildren will be arriving at our home Sunday late in the morning so that we can have Christmas Dinner together.  There will be nine people!  I am preparing that dinner!  Maybe they won’t read this post before Sunday.  Who knows what I can do to ham steaks, cheesy potatoes, grape salad, garden corn — and half of a Prime Rib roast left over from today (it was huge).

No, I will not be making Rosalie’s Honey Crunch Pecan Pie!!!! (I may, however have a large glass of the secret ingredient in that pie — check last night’s post.)

Mary Ann was quite subdued today.  She seemed very tired.  It was hard for her to get to sleep last night.  She seemed excited about today.  I am not sure if she engaged in conversation when I was out of the room, but it did not appear to me that she was very responsive and communicative.  She went to bed at 6:30pm after napping with her head on the table in front of her transfer chair for an hour or so before then.  I hope she perks up by Sunday when the kids are all 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.

 

December 14, 2009

Christmas Preparations

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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I just forgot!  I actually forgot about the Christmas tree.  I am a Pastor, how could that happen?  It is not that I forgot about Christmas.  I just forgot about the tree business.

Up until yesterday, the thought had not crossed my mind that there was something missing in our plans for Christmas.  We have been shopping.  Plans are made for the family gathering and celebrating Christmas on Sunday, the 20th, since that is really the only convenient time for our crew to get together.  (I have absolutely no idea what we will eat that day.)

I have even done the massive decorating of the outside of the house.  The decorations are unbelievably dramatic and terribly time-consuming to put up.  I will give you the details of how the decorating of the outside of our house is done.  First I open the garage door.  Then I walk over to the shelves in the garage and take down a box.  From that box I retrieve two artificial wreaths, each with a red bow on the bottom.  I take the wreaths outside and gently place one around each of the sconces on either side of the garage door.  What an undertaking!!! I am exhausted just thinking about it.

I feel like Pastor Scrooge when I drive through the neighborhoods to look at all the outdoor lights decorating houses and yards and then drive up to our house afterward.  Mary Ann would have loved having outdoor lights.  I just couldn’t bring myself to do it.  It is not some sort of theological statement about the real meaning of Christmas versus the decorations.  I am fine with people doing whatever brings them joy as they celebrate the holiday season.

I suspect that part of the reason I have not gotten into much in the way of elaborate Christmas Decorations is that before I retired, this was pretty much the single most demanding time of the year.  Admittedly, Holy Week and Easter are up there with it.  I was so focused on work, and so overwhelmed with all the preparations that I could not muster the motivation to carve out time for decorating the house.  Some of it is that I am far too easily frustrated when trying to take on new tasks and figure out what to do and how to do it.  I needed no added stress at such a busy time.

I don’t really know what other pastors do.  I suspect we are as varied as the general population in the area of decorating the house for the holidays.

We did always put up a tree and do some indoor decorating.  Mary Ann saw to that.  She did not say anything about the tree this year, and I just didn’t think of it.  Now in case someone reading this is getting depressed for us about the tree and indoor decorations.  Now that I remembered, the tree is up.  It has no lights or decorations yet, but it is up.  There are a few things on the mantle.

I have to admit that the motivation for getting the tree up is the fact that our Children and Grandchildren will be here next Sunday.  I suspect they would all be bummed if there were no tree.  Having talked with other folks our age and older, it seems that I am not alone in the lack of interest in putting up the tree.  Mary Ann, on the other hand, would probably not tolerate going through the Christmas season with no tree.  She has always loved the lights and ornaments.  Many years ago we put tinsel on the tree each year.  We had the classic difference in technique.  I would meticulously lay each strand of tinsel over the branches, and Mary Ann would toss handfuls of tinsel on to the tree.  It is a marvel we will be married 44years on Friday.

Mary Ann’s day today included a lot of sleep.  We both slept in.  It was about 10am before we woke (other than the commode trips). I got her dressed, gave her pills and breakfast.  There was an urgent trip to the bathroom, including a couple of substantial fainting spells.  Then when I took her out to the Living Room, she asked to turn around and go back to the bedroom to lie down.  She napped for a couple of hours.

This afternoon after she got up and ate a sandwich, I got the tree up from downstairs.  Then all of a sudden, she got up and headed off.  When I asked where she was going, she said to the kitchen to make something.  I became frustrated with the fact that I was mid stream in getting the tree up, and her actions were demanding that I stop, leave the tree parts in the box on the Living Room floor and help her in the kitchen. I insisted that she give me time at least to put the tree together and get the box out of the Living Room.  I had already moved the furniture to accommodate the tree in our small town home.

As soon as she said that she was going to go to the kitchen to make something, I knew what it was.  The last time we were at the grocery, Mary Ann insisted on getting some of what we have come to call “Lisa’s Cereal.”  In fact we phoned Daughter Lisa while standing in the cereal aisle at the store.  We disagreed on what cereal it was.  We bought two boxes of Quaker Oats Squares.  There is a wonderful pecan crunch made with the cereal, pecans, brown sugar, butter, Karo syrup, vanilla and baking soda.

After the tree was put together, we headed into the kitchen and made the pecan crunch.  Mary Ann sat at the little ice cream table that resides in the kitchen eating area, while I followed the recipe, without ad libbing, and prepared that decadent and very tasty snack.

After church tonight, we picked up some food that Mary had prepared for us, Lavonna’s beans, a couple of containers of spaghetti, and Mary Ann’s favorite green Jello with cool whip and cottage cheese.

Mary Ann is in bed, but the signs are that this will not be a good night for sleep.  I hope I am wrong about that.

 

December 13, 2009

Granddaughter Shines!

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
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She watched the director, knew the music, sang with her mouth open wide just as she should, and brought some joy to her Grandparents (and, of course, her parents).  This Grandpa loved every minute, since singing was in the center of my life during most of my first two decades of life, and has remained a love until now.

We drove a little over an hour to the church at which Chloe’s choir performed.  Her other Grandparents made a trip more than twice that length to come to the concert.  The choir is sponsored by the University of Missouri, Kansas City (UMKC). Auditions are required to be able to sing with the choir.

Then logistics needed to accomplish the day’s activities were not always easy.  Churches try hard to be accessible for the handicapped, but old buildings often will simply not cooperate in the task of becoming welcoming.  We thought it wise to make a bathroom stop before the concert.  There was an accessible bathroom inside the ground floor doors near a handicapped parking spot.  The doors were locked to force the attendees to use a door that would allow entry to the room from the back.

Gratefully, we got the attention of then attendant who let us in and waited while we used the restroom.  The need to change the pad due to incontinence resulted in removing shoes that are difficult to get on and off.  We used an elevator to get to the floor on which the concert would be held.  As a result of the time spent in the bathroom, we barely made it in through a door in the front of the room, the same door through which the choirs entered.  We were directed to the indentation in the pews for wheel chairs, but all the seats around it were filled.  Gratefully, a family offered to split up with Dad moving the pew behind so that I could be right behind Mary Ann.

After the concert, to get to the reception area, we had to return the same way, take the elevator to the lower level, pass through the kitchen, and then arrive at the reception area.

Before the concert, we ate out together.  The handicapped parking spaces were a block from the restuarant.  To get to the booth, we had to go through the serving area.  Booths are always a bit of a challenge.  Ordering was pretty difficult, as it always is, since a compromised executive function of the brain is among the first of the problems to emerge with Parkinson’s Disease Dementia (Lewy Body Dementia).  She really struggled to track and then decide what to order.

Again, getting the food to her mouth, coordinating the straw so that she could drink did not go very well.  Then twice, she just fell to the side. [See an earlier post on leaning to the left.]  After the second time, I moved from sitting in the chair that had been added for me, to sitting right next to her on the booth bench, with my body supporting hers.  When we ate at BoBo’s earlier in the week, she had fallen to the right twice while sitting in the booth.

After the concert we had a nice time with the kids at their house, along with Daughter-in-Law Becky’s parents.  Mary Ann was sitting off to the side a bit since she needs a hard, straight-backed chair to keep from being trapped in the chair, unable to assist when she needs to get up.  I stood near her so that the conversation would include her, even though she said only a few words.

I need to ask the kids to confirm, but today seemed to indicate that Mary Ann has lost ground in the recent past.  I am beginning to accept the possibility that this is just the way it is now — that we have moved to a new normal.

When we left their house, we headed down to see the Plaza Lights.  Kansas City is a beautiful place for the most part.  The Country Club Plaza, built in the 30’s with all the buildings done in Spanish Architecture, is a wonderful spot.  There is a huge fountain on one end.  There are parking garages built with the same architecture.  There are horse drawn carriages, people walking the sidewalks.  There are lots of exclusive stores, most having very expensive merchandise.  The lights outline all the buildings and have been put up from Thanksgiving through Christmas for many decades.

We lived in an area a mile or so south of the Plaza for fifteen years.  Our children grew up there.  It felt wonderful tonight to be driving those same streets that had become so familiar.  I realized how much I miss the feel of a metropolitan area that has people walking about, families, young people, folks out walking their dogs, local ethnic restaurants, curved streets, tall trees everywhere.  I guess we just fell in love with Kansas City during those years there.  As we drove, Mary Ann admitted that she would still like to move back to KC.  There are a number of reasons that pretty much eliminate that option, but this is not the first time she has said that.  One of the reasons moving back is unlilkely is that the house we bought for $22,500 in 1972 was on the market a couple of years ago, listed at $310.000.  What is it they say, “location, location, location.”

All in all, today was a good day.  While there were signs of Mary Ann’s apparent decline, the joy of getting out, hearing Chloe sing, enjoying conversation, and seeing beautiful Christmas lights more than compensated.

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.

 

December 12, 2009

But we don’t have a little Black Poodle.

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , |
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We did have a little black poodle.  In fact we had two — one for thirteen years and the other for sixteen years.  MAT’s Happy Suzette was Mary Ann’s dog.  We got her from friends (with her papers).  She was our first — the pet that comes before children.  Actaully, she barely tolerated the children.  She was Mary Ann’s dog.  She was pretty grumpy.  When Mary Ann went to the hospital to have our first child, Lisa, Suzette tore a hole in the bottom sheet of our bed, scratched until the threads that formed the pattern on the bedspread were all in a huge clump in the middle of the bed, and destroyed two souvenirs from our trip to Europe, a decorative candle and a hand carved wooden horse from Oberammergau, Germany. 

After Suzette died, KC Sugar Dandy joined the family.  She was a happy little character who knew nothing but a time when the kids were here.  She fit right into the family since she loved ice cream.  She lasted sixteen years.  After she was gone, a few years ago, we decided not to tackle having a dog again. 

When we were heading out to Mary Ann’s spot in the living room this morning, she sort of jumped and told me not to run into the dog.  I asked her to describe it.  She said it was a little black poodle. 

After she got up annoyingly early, took pills and ate breakfast, she decided to lie down again.  There had been a pretty substantial fainting spell.  She slept for about two and a half hours.  During that time, the plumber came and replaced a leaking garbage disposal.  It seems clear that they are made in a way that includes planned obsolescence. 

When she got up, we headed out to Perkin’s for her pancakes and bacon.  We ran home for a bathroom stop after the restaurant.  When I was wheeling her from the door to the garage around the corner of the stairway railing, in a matter of fact voice, said, “put something on.”  I asked her who she was talking to.  She answered, “Micah.”  Micah is our now thirty-seven year old son. 

Since she was not sleep deprived it surprises me a bit that the hallucinations have worsened.  I mentioned in last night’s post that she saw the Thursday people and asked me to close the bedroom door for privacy’s sake while she used the bedside commode.  I referenced them today, and she is still convinced that they are real. 

We did some Christmas shopping in mid-afternoon.  As short a time as we spent doing it, with only two stops, it wore both of us out.  Neither of us are good shoppers anymore.  I am the get-in and get-out sort of shopper. 

I have been using the word “decline” a lot in the last few weeks.  Mary Ann seems to be weaker, in need of more help in walking.   She struggles with eating far more than in the not too distant past.  At least it seems so to me.  Her urinary incontinence has increased substantially in frequency and quantity. 

It was reassuring a couple of weeks ago to hear a description of Mary Ann’s heart and kidneys that seemed to suggest that the decline in the cardio-vascular system is pretty slow.  She is at risk, of course, but fairly stable in the last couple of years.  The Neurological problems, the Parkinson’s, Parkinson’s Dementia, Autonomic nervous system problems seem to be more intent on taking us to a less happy place. 

I looked at the monitor and could not see her.  When I got to the bedroom (moved very quickly), she was sort of wandering in between the beds.  She wasn’ t sure where she was going.  She had a mild fainting spell.   I had to manipulate her to the center of the bed.  Then she wanted to use the bedside commode and fainted again.  After I finally got her positioned facing the way she wanted, I understood her to ask if she needed to run somewhere. 

I have begun realizing that the physical demands on my body in caring for her seem to be on the increase.  Manipulating her in bed is becoming painful in my lower back almost to the tailbone.  I am holding her up more when we walk.  I hold her tight at my side and almost carry her along.  The awkwardness of helping her up and down from the commode, holding her up with one hand while pulling up her underwear and then pajamas with the other is seeming to be more taxing as she seems to be less able to help in the process.  No one change by itself is very dramatic.  It is the cumulative effect of a number of incremental changes that seem to be adding up to something noticeable and a little troublesome.   It could not have anything to do with my getting older, fatter and getting no exercise other than what I do to help Mary Ann. 

Let’s hope for a good night from now until 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.

 

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