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: , , , , , , , , , , , , , , , |
1 Comment 

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: , , , , , , , , , , , , , |
[2] Comments 

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 18, 2009

Rosalie Seebeck’s Honey Crunch Pecan Pie

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , |
1 Comment 

Why??  What possessed me to try this?  If I needed to make a pecan pie, I could have just used the recipe on the bottle of Karo Dark Syrup.  Why on earth did I have to make Rosalie’s Honey Crunch Pecan Pie??  Maybe it was the secret ingredient, the tablespoon of Bourbon that intrigued me.

Rosalie won the National Crisco Bake-Off in 1989 with this pie. The prize was a $10,000 new kitchen.  Rosalie is a member of the congregation in Bethany, Oklahoma, of which I was the Pastor for about nine years.  Not only was that congregation a warm and loving crew who taught me how to be the pastor of a congregation (up to that point I had served as an Associate Pastor with a limited portfolio), but Rosalie was a member.  We relished those times we were invited over to eat at their place.  I remember once paying $45 for one of her Honey Crunch Pecan Pies at a fund-raising auction.

Anyone can find the recipe.  I just Googled “Rosalie Seebeck’s Pecan Pie.”  While the recipe is easy to find, the secret to making it as Rosalie did, makes it impossible to match perfectly.  Rosalie grew up on a farm.  She was the oldest of a number of children, so she had to learn to cook.  Her farm years had impact on that pie.

Oklahoma City is an interesting place.  It is an overgrown town.  When I first arrived at the church, across the parking lot was a small field with horses in it.  Lots of folks had gardens and livestock.  Ray and Rosalie had chickens and bees and a yard filled with pecan trees.  She carried on the plane to the contest in California, eggs from their chickens, honey from their bees.and pecans from their trees.  Oklahoma pecans are small and especially flavorful.

This pie is made in stages, with chopped pecans in the filling, followed by pecan halves in the next stage.  The pie is cooked for fifteen minutes, then the foil around the crust is added.  After another twenty minutes, the coating for the larger pecans is made, the pecans stirred in until they are fully coated, then spread on the top of the pie.  Then the pie goes back in for more cooking.

There is filling and sugary coating in pools on the bottom of the oven, smoking so much I pulled out the Security System information in case I had to call off the fire department.  Gratefully, the smoke detector did not go off — nor was the pie itself burned.  I will be anxious to see how it came out when we cut it for the crew that is coming to the house to help us celebrate our anniversary tomorrow.

This morning I put a large pork loin in the crock pot after browning it.  Then came the onions, apples and sweet Bavarian sauerkraut.  It cooked on low for about seven hours.  I loved it.  Mary Ann did not.  She used to make the same thing the same way.  She used to like it.  That she will not eat what I cook hurts my feelings, but by now, I should know better than to expect that to change.  I made her a sandwich so that she would have something in her stomach for the night.

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.

Then the next day will be devoted to preparing side dishes that will accompany our early Christmas celebration dinner on Sunday.  This cooking business is getting completely out of hand!

It is getting late.  Mary Ann seems to be sleeping at the moment.  It took her a long time to settle tonight.  Hopefully, there will be some sleeping for both of us before the morning chores begin.

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 16, 2009

Shopping: Groceries and Christmas Gifts

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , |
Leave a Comment 

She knew exactly what she wanted us to make for Christmas dinner.  I had no idea what she was thinking until that moment in the grocery store.  I had asked a number of times what she thought we should make for Christmas dinner when the family gathered.  Each time I asked there was no response.  I made suggestions encouraging a yes or no answer, but there were no answers, neither yes nor no.

At the grocery, she said something out of the blue about making a list.  Then I think she said the word “salad.”  The interaction caught me off guard, since she seemed to be saying that we needed to list ingredients for something for Christmas.  We were in the throes of shopping, dealing with the person in the deli department slicing cold meat for us.

That conversation ceased for the moment.  When we were passing by the meat counter, on the way to get something on the other side of it, she stopped and said something about ham.  The options I had been suggesting as options in those earlier attempts at deciding what to prepare included things we have had in the past, a spiral cut Honey Baked Ham, a brisket, turkey, even a take out Prime Rib special from a local restaurant I had just seen.  Through some asking and answering it became clear that she was talking about ham steaks.

We got two large ham steaks.  Then she said something about grapes.  Finally she said “Grape Salad.”  That is a very tasty salad that again had never been mentioned in the many times I asked about Christmas dinner.  I had gotten only complete silence in response.

What apparently was happening is what I remember Thomas Graboys talking about in his book, Life in the Balance.  Mary Ann seemed to have had conversations in her mind that never included any words coming out of her mouth.  There have been times that she seemed convinced that she had said something, or we had talked about something when there had never been any spoken words.

Occasionally, Mary Ann has seemed to blur the line between dreams and reality, convinced that there was an interaction, a conversation about something, providing information that sounded as if is was the matter of fact recounting of something someone had told her.  What complicates things is that sometimes she is remembering absolutely perfectly something that did happen, was said, something I either wasn’t around to hear, or simply forgot.

On the positive side, it forces me to listen to her without dismissing what she says immediately even if it sounds bizarre.  It may be true.  It may not be true.  On the negative side, I am always pretty unsure and often frustrated trying to figure out which is which.

Mary Ann has not been able to participate much in the shopping for Christmas gifts.  I have gotten lists or thought of or seen something in most cases.  There was one item she remembered for someone, something mentioned to her when I was not around.  We got it.  I am not sure if it is a memory of a converation in a dream or a real one.  In this case, I am fairly confident it is something she is remembering from a real conversation.  I will find out when the presents are opened this Sunday, when we celebrate an early Christmas.

I do have to admit that while sometimes pretty frustrating, it is not boring around here.  There are often surprises, sometimes pleasant ones, sometimes not.  I suppose a couple of days of boring might be okay, as long as there was a good night’s sleep included.

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: , , , , , , , , , , , , , , , , , |
1 Comment 

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: , , , , , , , , , , , , , , , , , , , , |
Leave a Comment 

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 11, 2009

A Good Night Out

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
Leave a Comment 

If you have not heard “O Holy Night” sung by Kristen Watson, you have not heard “O Holy Night!”  Music has the power to break through defenses and touch us at the core of our being.  When trite or contrived or done badly, it has no power but to annoy.  When done well, with honesty and integrity, there is no defense that can repel its power to engage one’s spirit.

When Kristen sang “Gesu Bambino” there were no defenses left.  The last note with its quiet and gentle power, set the stage for “O Holy Night.”  Since retiring from the Pastoral Ministry, a combination of Caregiving demands and traveling to visit family have diminished dramatically the opportunities to attend the most powerful worship opportunities at Christmas.  Last night’s concert was an experience powerful enough to fill the spiritual longing that comes with each Christmas season.

What added to the deeply felt comfort was that I was able to sit with Mary Ann in the little raised area for those in wheelchairs.  My ticket was for a seat behind and a dozen feet away from Mary Ann. I couldn’t bring myself to sit down separated that far from Mary Ann.  It surprised me a little to feel so strongly the need to be next to her.  In the past, I have generally retreated into my own world at concerts, listening intently, immersed in the music.  Someone suggested the possibility, and I checked to be sure it was acceptable for me to sit in that area.  Companion Care Aide, Debbie, sat on the other side of Mary Ann.  As it turned out, there was no need for a trip to the bathroom during the concert.   All of us got to experience fully the entire program of music from silly to sacred.

There was a dimension to the evening that I did not fully anticipate.  Having retired from the role of Senior Pastor at the congregation I served for over a dozen years, I have not seen and talked with more than a handful of the members of that congregation since I retired a year and a half ago.  It was like a reunion.  It didn’t take long to realize how much I miss the people who had become a part of my life during those years.

There is an intimacy that develops between pastor and people that is hard to describe. The ministry is not as much a job as it is a relationship.  Certainly there are lots of other professions that include at least as strong a relational element.  I can only speak to the ministry, more specifically, my experience of it.  Last evening I redicovered how connected I came to feel to all those folks, and how much I have missed getting to interact, to talk and listen and kid around with people I care about.

The combination of celebrating a reunion of sorts as well as being lifted spiritually by the music made for a very good night out.  Mary Ann was greeted and engaged by many, and she too enjoyed the music.

After two days holed up in the warm house, protected against the elements (snow and bitter cold), we both needed the time out, distracted by something other than the television.

The change in the medicine mentioned in last night’s post seemed to have the hoped for consequences.  There was a return to a more normal level of intestinal activity almost immediately on discontinuing the generic Mestinon.  Today has been a fairly normal day.  Mary Ann got up early, then took a two and a half hour nap.  We got out to lunch at BoBo’s, headed to the Honda dealership for a quick minor repair of the CD player in the van, and visited the home of a friend, one of Mary Ann’s closest friends from almost the very first day we arrived here nearly fourteen years ago.

Tonight Mary Ann had some pain that needed a nitroglycerin pill.  Those are always scary moments, although not at all uncommon for folks with heart blockages such as Mary Ann’s.  The pain subsided after taking the pill.  She woke up a few moments ago and needed a trip to the commode.  The Thursday people are back.  She wanted to know what the next family was going to do.  She insisted on closing the bedroom door while she used the commode so that they could not see her.  I hope she is able to get back to sleep, and that she has a restful 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.

 

December 10, 2009

Giving up on a New Medication

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , |
Leave a Comment 

If there were any indication that it would be worth the trouble to deal with a very annoying side effect, we might hang in there in hopes that the problem would eventually subside.  There is no clear evidence that the Pyridostigmine (brand name, Mestinon) has had any impact on Mary Ann’s fainting spells (syncope) due to the Orthostatic Hypotension (sudden drop in blood pressure when standing up).

It has only been a little over a week, but multiple trips to the bathroom each day with something close to diarrhea has worn us both out.  Most of the times there has been too little warning to get there in time.  Each medicine brings with it a cluster of side effects.  There are no perfect meds.  There is always a balancing act weighing the benefits against the problematic side effects.

Since the high blood pressure is such a serious problem, this is no small decision.  We will continue the Midodrine at the lower dosage we started just before adding the Pyridostigmine.  The Midodrine keeps her blood pressure at a higher level than is healthy for her in the long term, but it reduces the number and intensity of the fainting episodes.  We will accept the vulnerability to fainting spells that comes with the lower dose of Midodrine.  If those spells increase to the extent that they are stealing from us the capacity to have a reasonable quality of life in our time together, we will increase the dosage of the Midodrine to last summer’s level when the fainting had gotten out of hand.

The last two days have kept us inside for the most part due to bad weather.  It is at times like these that it becomes clear again that 24/7 with one another it tough to maintain.  The needs that come so very often become harder to deal with in a pleasant and patient way.

Gratefully, we have a treat tonight away from the house.  It will be a challenge, since the wind chill today has never gotten above zero.  The air temperature is heading to zero or a degree or two below by morning.  The treat is too good to pass up.  It is a Christmas Concert by the local Symphony.  What makes it such a treat is that a young woman who grew up in the congregation I served is singing at the concert.  Her Mom is on the Staff at that church.  She has the most beautiful voice I have ever heard. She is based in Boston now, and, on occasion is a vocal soloist for the Boston Pops. Check out her Blog for a real treat: http://kristenwatsonsoprano.blogspot.com/

Arranging to get to the concert was no small task. Mary Ann wanted to go, but I could not be sure she would not be able to go at the last minute.  Then came the prospect of getting there and at some point needing one or more trips to the bathroom.  Given the side effects of the new medicine she was taking, that was pretty likely.

While I do not yet know exactly how the evening will go, I realized how important it was to me to be able to experience the evening’s music.  I called the Agency, Home Instead, that we have used in the past.  The Companion Care Aide who came on Sunday mornings before I retired was available.  She committed to coming this evening to be with Mary Ann here at home if need be.  I called to buy a ticket to the concert for the Aide so that if Mary Ann could go she could be there with Mary Ann to help her to the bathroom.  To my surprise, a complimentary ticked now awaits us if we need it.

Enough for now.  Tomorrow’s post will include a reflection on the evening.

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 9, 2009

Dental Hygiene

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , |
Leave a Comment 

In the past, Mary Ann would do almost anything to avoid going to the dentist.  Dr. Ron when we were in Oklahoma City and Dr. Bob here have had a gentleness that won her over.  She goes four times a year now, without balking.

Four times a year may seem more often than necessary.  During the years we had dental insurance, it only paid for two of the four times each year.  Why four?  Two reasons: 1. lack of manual dexterity; 2. lack of adequate caregiving.  This is among the many things of which I am not proud.  I just can’t bring myself to do the mouth care for Mary Ann that she cannot do herself.  I have no excuse.  I do a reasonable job of a number of other things, but not that.  Going to the Dental Hygienist four times a year helps compensate for the lack of good care at home.

As is so often the case, medication that does much good in one area of health care can create problems in another area.  The combination of Plavix and Aspirin helps protect against another stroke as bits of plaque can break loose from the lesion on the wall of one of Mary Ann’s carotid arteries.  That combination of meds thins her blood to the extent that by the time the Dental Hygienist is done, there is much bleeding.

After each cleaning of her teeth, we put a Chux (absorbent pad lined with plastic) on her pillow so that the blood from her gums will not stain the bedding.  We learned to do that the hard way, as is so with most of the things we have learned over the years.

There was a point at which we were looking at multple thousands of dollars in potential work on her teeth.  Dr. Bob has managed to keep her mouth in pretty good shape without doing major work.  The prospect of many hours in the dentist chair with the vacillations between stiffness and involuntary movements did not make major dental work an acceptable option.  There were a couple of extractions along the line.  Surprisingly, Mary Ann found the extractions easier than having crowns done.  She was surprised at how fast she was in and out of the chair when the extractions were done.  She had no problems associated with those procedures.

Actually, the dental issues that come with Parkinson’s are seldom mentioned.  We have tried a number of electric toothbrushes.  Mary Ann has a very small mouth providing little room for normal sized brushes.  We have often gotten children’s toothbrushes.  Even the smallest head for an electric brush does not seem to work for her. The manual dexterity needed for brushing teeth is just not there.

Along with many other diseases, it is often problems that are not directly caused by the disease process itself that come to be the most troubling as time goes by.  They are things that are not symptoms of the disease but rather consequences of its long time presence.  As an example, I am watching the skin on the underside of Mary Ann’s forearms.  She spends most of her days in the transfer chair, with her arms resting on the arms of the chair.  I am watching to be sure that the skin under her arms does not begin to break down.  The impact on her dexterity and spatial judgment affects the ease of eating and drinking, making her vulnerable to weight loss and dehydration.  Our Cardiologist feels that the heart issues were a result of the intense dyskinetic movements that are a side effect of the primary Parkinson’s Medication after many years of taking it.

When a person becomes a Caregiver, it is not enough to listen to and read about the disease itself and its symptoms.  It is interacting with others, in support groups, online communities, talking with other Caregivers, reading what has been written by people who have either had the disease or cared for someone with the disease that provides the full story.

I had the advantage of being in a profession that took me into hospital rooms often many times a week. Folks made a point of sharing their medical problems with me as I ministered to them.  As I looked and listened, I learned much of what has helped me tune in to Mary Ann’s problems.  I learned how to talk with and listen to the medical professionals, making it easier to ask the right questions and understand the answers.

For now, I just hope the gums heal and the bleeding subsides.  It is surprising how helpful it is to use a cold substance to ease mouth discomfort after a visit to the dentist.  A chocolate shake from Sonic did the trick this time.  Did you know that Sonic just switched to using real ice cream in their dessert specialties (shakes and sundaes and blasts)?  Does that news leave you also wondering what it was they used to make those treats before they switched to real ice cream?

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 7, 2009

Losing Ground or Side Effects?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , |
Leave a Comment 

Mary Ann has been noticeably weaker lately.  Of course, we have been trying to regain ground after what was lost in the three day hospital stay.  It seems as if the last few days have taken us the wrong direction.

The question is, what is the cause of this latest decline, albeit a comparatively small decline.  Is it the result of cutting back on the Midodrine and adding the Mestinon to her medication regimen a few days ago?  Check the last few posts on this blog for an explanation of what those meds do and why she is taking them.

One of the folks in the online Caregiver Spouses group mentioned weakness as a potential side effect of the Mestinon.  I am trying to get more information on that possibility.

Another side effect of the Mestinon is diarrhea.  There have been quite a number of trips to the bathroom that might be caused by the medicine.  The information sheet from the pharmacy suggests that this and other potential side effects may subside after a time.  I am hoping that her intestines will settle, so that she can continue the medicine.  It is not certain yet that the new medicine is having the sought for impact on the problem.

If we have simply lost ground in the battle against the Parkinson’s Disease itself, the Parkinson’s Disease Dementia (a Lewy Body Dementia) and the resulting Autonomic Nervous System dysfunctions, we will handle it and incorporate it into a new version of normal.  If, as the timing suggests, the medications are mostly the cause of the decline, we can do some more tweaking, adding, subtracting, or whatever has the potential of helping us regain lost ground.

For now, I’m tired. She seems to be sleeping.  I think I will try that out too.

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.

 

« Previous Page — Next Page »