April 12, 2010

What Does She Remember?

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“Do you remember anything about last night’s bathroom ordeal?”  She answered, “I remember you saying there’s poop everywhere.”  I asked the question because Mary Ann so often has little or no memory of times that have included lots of fainting.  In fact, Mary Ann seems to remember very little of the difficult times.  What a blessing! I, however, do remember.

The night did not go well for the first few hours after the bathroom debacle.  Mary Ann was up every few minutes, sitting on the side of the bed, not sure why.  As a result, both of us were exhausted this morning.  Mary Ann was especially confused about most everything.  The fainting continued.  When she ended up in bed after breakfast, I decided to lie down also.

Both before and after our naps, the fainting was constant.  Every time she stood up, she fainted.  That meant that I needed to be within a few feet of her all the time.  It is interesting that even though she fainted every time she popped up, what would seem like a natural deterrent did not work.  Since she has no awareness of the fainting, it does not work its way into her consciousness when she feels the need to stand up.  Most of the times she stood up and started to try to get around the front of the chair, seemingly headed somewhere, she could not tell me why she stood up and where she was going.

As the day wore on, the fainting began to subside.  I suggested that we attend the Evening Service at church tonight.  While, as usual, there was no verbal response, a little while after I asked about church, she stood up.  When I asked where she was headed, she answered that she was going to get her shoes.  That was her way of answering my question about church.  It is hard to explain just how frustrating it is to have no verbal clues to help discover her thoughts or intentions.  I have to wait for some physical movement to determine what she has decided.  What is more frustrating is to ask, get one answer, and then seconds later discover by her movements that she is actually doing the opposite of what she said.  She said, “no,” she is not interested in doing whatever.  Then she immediately gets up to do what she just said “no” to.  It is just the nature of the misfiring that goes on due to the Parkinson’s Disease Dementia, but it is nonetheless frustrating.

We did go to church.  She did very well.  It was sort of odd to realize that those who saw us, had no idea what we had just gone through with the fainting and bathroom nightmare.  It would have served no purpose to do anything other than just say, we are doing okay.  One commented on this blog.  She may have been aware of what we had gone through last night.  It does help to know that there are some who track how we are doing.  Caring enough to read about our days is a precious gift to us.

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

 

April 10, 2010

Bucket List?

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This morning she said, “Let’s go some place and have some fun.”  Further interaction confirmed that she meant some sort of major trip this summer.  As we talked, she said, probably nowhere high [in elevation].  We had begun arranging through friends the use of a condo in the mountains of Colorado a couple of years ago.  After consulting with the Cardiologist, it seemed unwise to tackle a high elevation, putting stress on Mary Ann’s heart.

In the movies, a bucket list makes all the sense in the world.  Who could argue with doing anything and everything you have wanted to do before dying when death seems to be coming in the near term?  In the movies, whatever stands in the way can just be written out of the story line.

The dilemma in deciding what to do in response to the request for a major trip for fun, is that there are conflicting realities.  Each has validity.  One reality is Mary Ann’s view that is no longer reasoned through the executive function of her brain.  To her, the fainting, bathroom issues, problems with eating, falling, sleep problems, access to appropriate medical care, all are of little or no consequence.  She lives in a world in which she is constantly protected by those of us around her, taking care of whatever problems arise.  In that reality, there are no barriers to traveling wherever and whenever, just having fun doing all sorts of things.

There is validity in that view.  The various assessments of her physical/mental situation suggest that there may not be many years left to do all sorts of entertaining and enjoyable items on our wish list.  Assuming that is so, we need to get out and do anything and everything we can, as soon as possible.

The other reality is that we are on a roller coaster in which there is no telling if Mary Ann will be alert or completely out of it, whether she will be able to stay awake or will crash suddenly, whether she will be able to stand and transfer to the toilet stool or will crumple in a dead faint.  We don’t know if she will be able to eat or sleep or discern reality from hallucination/delusion/dream.  In the other reality, I am the one who has to figure out how to deal with whatever comes when it comes.  Not having the resources that are easily accessible here at home when problems come is a real issue.  This is not a movie.

The question is, how do we balance what is actually so in our little world with what we would like to be so.  My problem is determining how many of the barriers that I see are more my own concerns over what might happen rather than real barriers.  Now that we have made decisions associated with the transition to Hospice Care, the fear of not making it to a hospital in time may be unsettling, but it is no longer the primary issue.  We have already faced that demon and stolen its power.

I don’t want to stand in the way of Mary Ann having as good a quality of days as possible in these next months or years.  I also am not infinitely good and capable and strong and filled with limitless endurance for whatever may come.

In a recent thread of posts by members of the online group of Caregiving Spouses of those with forms of Lewy Body Dementia, there were some who talked about the struggle to do enough to provide adequate stimulation in their Loved Ones’ lives.  Some in that group have seen how others can draw the best out of their Loved Ones as they respond at a level referred to as “showtime.”  We have just come off three weeks of visits by friends and family.  Mary Ann has been at her best much of that time.  She has been engaged in conversation, she has laughed, she has connected and initiated interactions.  As Caregivers we want to provide that sort of quality all the time.

We can’t do it.  We can’t provide enough to compensate for their limitations.  Last night Mary Ann did not sleep well.  Today she made it through lunch, then crashed, fainting so much that she just had to lie down.  That was at about 12:30pm.  I tried to get her up two or three times, but it was 5:30pm or later before she got up.  We got some Dairy Queen, she came home and crashed again.  No matter how romantic it sounds to check off items on a bucket list, there are some parts of our reality that we can’t change.

For now, my intention is to think as creatively as possible about options for places that might be fun for Mary Ann.  I am willing to stretch beyond my comfort zone what we try to do.  She has mentioned the Quilt Museum in Paducah, Kentucky as a possible destination in the past.

…I have just been “scared straight!”  My comments above about two realities have just ceased to be a balanced weighing of conflicting views.  I have spent the last hour (not sure, lost track of time) in an intense battle with active intestines, in a fainting, jerking stiff body, fighting against every move to try to keep what was coming out off clothes and into its designated receptacle.

Mary Ann is only 113.5 at last weigh-in, but it took every ounce of strength I have to try to manipulate her into position, hold her up while trying to clean her up, while she would stiffen in a sort of mild seizure, or go completely limp becoming dead weight, all happening while trying to take clothes off or put them on or wipe off her body where it had spread or the toilet seat so that it didn’t spread again when she fell back down on it in a faint.

This was about as tough a time as we have had with that activity.  I describe out loud the difficulty I am having and my frustration with it as it is happening.  That is part of my getting out what would be tougher to handle if I tried to keep it in.  A couple of times when she happened to be conscious she told me to calm down. My most frustrating moments are the times her body is fighting against what I am trying to do to get her seated so it will go where it should go.  Once, she even said I should put her some place, to which I immediately responded, “I am not putting you anywhere!”

I have now rinsed the matter off Mary Ann’s pajama tops and bottoms in fresh toilet water, put them in and started the washer.  I have washed my hands fifteen times.  Cleaned the stuff from under her fingernails, gotten her in clean clothes and into bed.  There was one aftershock that included the fainting and all the rest except (gratefully) for the “stuff.”  She is again in bed.  I have taken a couple of Ibuprofen to take the edge off the back and muscle pain from the physical exertion.

You have just had a peak into something that is routine in the lives of many Caregivers.  Others in the online group have to do what I just did but with someone who outweighs them by a hundred pounds.  I have no idea how they do it.

Mary Ann will be fine; I will be fine.  It is just another day on our roller coaster ride.  This encounter with one of our realities has certainly suggested that traveling a long way may not be a very good idea.  It is hard to imagine doing what I just did, but in a motel bathroom.  At the moment, our bucket has no room for a list, it is full of poop.  Tomorrow is another day!

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

 

April 10, 2010

Crazy Robin Reveals Painful Truth!

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He looks at his reflection in a window panel at deck level and attacks, again and again and again.  It is a wonder he hasn’t knocked himself out.  Coincidentally, just last week the Kansas Birders discussed this problem in a thread titled “Crazy Cardinal.”  An explanation on the Audubon site said that Cardinals and Robins are almost the always the culprits when this happens.  There is so much testosterone flowing at this time of the year that they will even fight with themselves for territorial dominance.

When I watched this strange behavior going on, I couldn’t help but remember the quotation by Pogo, which ended up the title of a book,  Pogo: We Have Met the Enemy and He Is Us.

If I have read this correctly, there is a paragraph quoted in the forward to
The Pogo Papers, Copyright 1952-3, that comes from “Quimby’s Law (passed by the Town of Quimby after the Trouble with Harold Porch in 1897) on which the quote was based.  Whether or not I am correct, the paragraph includes an expansion of those words.

“There is no need to sally forth, for it remains true that those things which make us human are, curiously enough, always close at hand. Resolve then, that on this very ground, with small flags waving and tinny blast on tiny trumpets, we shall meet the enemy, and not only may he be ours, he may be us.”

Watching that Robin expending so much energy fighting against his own reflection struck a chord with me about some of the battles I fight, battles that I suspect other Caregivers fight.  I have little doubt that this painful truth lies in the experience of most of us, Caregivers or otherwise.

It seems to me that sometimes I expend more energy and experience more frustration dealing with my reactions to problems than the problems themselves.  The problems themselves are just facts of our circumstances.  I have no control over them.  They just are what they are.  They have no sentience.  They aren’t seeking to make me miserable.  They are just the harsh realities of living with any other human being, let alone one with Parkinson’s Disease and Parkinson’s Disease Dementia.  Some of those realities are just stuff that comes with daily living.

We have been impacted by Parkinson’s for over 23 years now.  That is just a fact of our lives.  Everyone has something to deal with, most often lots more than one something.  It is a waste of time to try to determine whose trouble is worse.  The issue is not who has more or who has less to deal with, the issue is, what will I do in the face of my problems.  I have a finite amount of time and stamina.  I can’t afford to waste a whole lot of it battling my own reflection.

Let me try to make sense of that.  When something happens, Mary Ann falls, I can pull the transfer chair over, pull her up, see if she hurt herself when she fell and then get on with whatever is next.  That takes some time and physical effort but nothing of major consequence.

Other alternatives for responding include the response just described plus wondering what possessed her to get up in the first place when she knows she is vulnerable to falling; is she just trying to make it difficult for me; why is she so stubborn, how many times do I have to do this; what if she hurts herself badly, that will mean hospital or rehab or nursing home; she will hate it there and so will I, will I have to spend my days at the nursing home doing all the things the staff doesn’t have time to do, should I have changed the dosage on a medication to help reduce the falls, is there something that I should have done to anticipate the fall and stop it from happening, if she would just stay in her chair, I could get something else done, Volunteers would be more willing to stay– the more she falls the less likely they are to keep coming to be with her.

I don’t go through all that every time she falls, but when anything happens, there can be all sorts of reactions that use up precious energy that would be better used just doing what needs to be done.  Too much time gets wasted fighting against imagined enemies that are created in my own mind.

Mary Ann slept well last night, and we both ended up sleeping late this morning — much needed.  Hospice Aide Sonya came and helped Mary Ann with the morning prep tasks.  There was some fainting later that resulted in a nap, but it was a fairly short nap.  We ate out at McFarland’s.  She allowed me to help her after a while.  We had some of Maureen’s spaghetti and Kroger’s brussel sprouts from the freezer.  Next came the promised trip to Baskin & Robbins.

Mary Ann is in bed now, but I am not sure yet how well she is sleeping.  There seems to be some restless movement.  Hopefully, we will both rest well enough to enjoy the beautiful day predicted for tomorrow.

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

 

April 9, 2010

Beautiful Mary Ann!

Posted by PeterT under Daily Challenges, Family, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , |
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Even at our age and in a wheel chair, Mary Ann is pretty.  Looking at those pictures of Mary Ann from the time before we started dating and pictures of her in our dating years and early marriage, I was reminded just how pretty she has been all her life.  No wonder I fell in love with her.  I am not so shallow as to have only looked at the surface.  Her personality has always been intriguing, exciting, unpredictable, entertaining and complex.  There has never been any pretense about who she is.

One of the things that jumped out in the pictures from earlier years was her bright smile.  That is one of the things that Parkinson’s steals from those whose lives it impacts.  Facial expressiveness diminishes.  Those pictures were poignant reminders of just how expressive and beautiful that face has been.  They also confirm and reinforce the image that still comes through when I see her.  It is a good thing when people grow old together.  These old bodies still contain young people.  When we grow old together, we can see past the old bodies to the young people living inside.

Mary Ann revealed that she was excited to have the chance to reconnect with her family.  It meant so much to her.  She has felt very disconnected after losing her Dad two weeks after we were married and two brothers, both when they reached the age of 51.  Her Mother has also been gone for many years.

The old pictures and conversation gave our two children a chance to discover more fully the family with which they have had little contact.  Their Cousin Diana and her Daughter Rachel provided through their presence and their stories about family a window into the other half of the gene pool from which our Children have emerged.

Mary Ann soaked it all in and responded as she could.  The night before last had been a tough one with multiple times up.  She crashed during lunch.  She could not hold her head up any longer as I tried to help her eat.  Finally, she gave in and decided to lie down.  After a long nap, she was able to interact and enjoy Diana, Rachel and our Children as they talked about and asked questions about the past.

Last night, Mary Ann went to bed and was asleep as soon as her head hit the pillow.  This morning, she was in exactly the position she was in when she fell asleep last night.  She had not moved a muscle, nor had she gotten up during the night to use the commode.

Our Daughter, Lisa, along with Husband, Denis, and the girls, Abigail and Ashlyn left for home early this morning.  Diana and Rachel were able to spend the day with us.  It was a good day, a little less intense and more relaxing.  We just spent the day getting to know each other better.

I had thought about giving them a quick tour of the area.  Mary Ann reminded me of the Tulip Festival at some spectacularly beautiful gardens at the edge of a lake on the other side of town.  The flowers provided clusters of vibrant colors, one after another, some more formal and symmetrical, others very natural with an asymmetry that was pleasing to the eye.  The weather was perfect, sunny, cool and clear.  The lake was sparkling and serene at the same time,  The gardens are filled with ponds and streams and waterfalls.

We moved on to travel west into the Flint Hills.  It would have been a crime to come this far and not see those rolling hills, prairie as it was hundreds of years ago.  Some areas were green with fresh grass growing.  During April comes the burn.  All the random seeds brought in by wind and wildlife germinate during the growing season and threaten to overpower the natural prairie grasses. In past centuries, buffalo fed on the grass until there was nothing left above ground. Roots extending fifteen to eighteen feet would assure that the native grasses returned the next spring.

On account of the decimated buffalo population, burning the foreign growth returns the hills to their pristine past.  Through the ashes soon burst the Big Bluestem, Little Bluestem and Indian Grass.  There is nothing like the contrast of that bright green emerging through the black ash cover.

The tour of the Flint Hills was a treat for me, and seemed to be so for Diana and Rachel.  We found our way to a little town called Paxico.  There is no grocery or gas station there, at least that I have found.  The buildings contain lots of old things for sale, ranging from flea market fare to expensive antiques. It is not a contrived and artificial imitation of an old town just for tourist consumption.  It is the real deal.  There is an outlet there for the pottery made by the Potter who turned the dishes and bowl that Mary Ann uses.  We have other pieces, bowls and cups and pitchers.  The name is Jepson Pottery.  His studio is in Harveyville, Kansas.

Mary Ann was ready for ice cream when we left Paxico.  We had leftover Grasshopper and Mud pies from Baskin and Robbins for supper.  Mary Ann is in bed and, after a snack and some Tums, she seems to be sleeping.  Tomorrow is likely to be a recoup day.  Hopefully, she will have another restful night tonight.

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

 

April 6, 2010

Sort and Purge

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Then comes: Assign a home, Containerize, and Equalize.  You now have the secret formula for making SPACE in which to live without succumbing to the clutter.  Easier said than done!!!

As Mary Ann and I looked at the symbols of our life as individuals and together, the sorting and purging has had implications beyond the things themselves.  While Mary Ann has been better at letting go of things than have I, I have inferred from a couple of reactions that she struggles with so much of her life being out of her control.  She has to get me to do for her much of which she has always done for herself.  She has an independent streak a mile wide.  It has to frustrate her to no end to have to depend on someone else, someone who gets grumpy and complains far too often.

To have things thrust in front of her with the question, “keep or give away,” can’t have been very easy, especially with an impaired Executive Function (reasoning things out rationally) due to the Parkinson’s Disease Dementia.  We wore her out.  She went to bed early.  We made a point of keeping anything about which there was any hesitance on Mary Ann’s part. She retained the veto power.

As the memories of past times are triggered, there are questions that lurk behind them: Is that all there is?  Is it enough?  Are there more memories to be made?  Does letting go of the symbol diminish or dishonor the past experience symbolized by it?  What on earth is this and when and where did we get it?

Actually, we have only done the relatively easy items.  For me, there will be boxes of ministry related items and memorabilia that have to be dealt with.  What does a person do with forty years of sermons?  Why do I suspect there are a number of smart aleck comments wandering around the minds of readers?

I have mixed feelings about the sorting, purging and organizing that is going on.  The benefit seems to me to be gaining space in which to live, both physically and mentally.  The clutter occupies a lot of space in my world.  On the other side of it, there is a bit of fear that having that job done will remove a goal that helps define my purpose.  I need to clean the basement.  That is a job for retirement.  Once it is done, what will fill its spot in my sense of purpose, my intentions?

Anyway, the task goes on.  While we were in the garage working on that task, a couple of medium-sized, maybe Labrador mix, stray dogs wandered by to visit.  They had no collars.  They were friendly, and appeared to be well-fed and in good health.  They were great with the kids.  We called animal control, but they dogs had wandered away by the time the truck arrived.  After he left, they returned and spent an hour or hour and a half, hanging around, playing with a tennis ball the kids were throwing, lying on the deck as the family sat out there.  I phoned animal control again, but this time no one showed up.  Finally, they wandered off.  I hope they are caught and find a good home.

Well, again, I am too tired to write any more tonight.  It is time to get some sleep.  Hopefully both Mary Ann and I will sleep well.

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

 

April 6, 2010

Speak the Truth in Love

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This morning, Mary Ann asked Daughter Lisa how things were going in her marriage.  It was just the opportunity needed for Lisa to tell her in a natural and gentle way the truth that all is well.  The general wisdom is to go along with delusions/hallucinations when interacting with someone suffering from dementia.  We are using the truth in love approach. 

Maybe Lewy Body Dementia [LBD] is different enough from other expressions of dementia to warrant an approach different from the general wisdom.  Parkinson’s Disease Dementia [PDD]  is a dementia with Lewy bodies, and presents itself in a way that is almost identical to LBD.  Those who suffer from LBD or PDD live in the margin of reality.  There are forays into a world with little, sometimes no relationship with reality.  Those with LBD/PDD can return to lucidity in a moment or a day or seldom. 

It seems that since there is movement between reality and hallucination/dream/delusional perceptions, surrounding the person with the truth can help the person move back to the reality side of the margin between the two.  Mary Ann may move back to the hallucination/dream/delusional view of reality, but having the truth surrounding her seems to help. 

Just a few moments ago, when she was moving in bed, I went in to see what I could do to help.  She asked if the party was over.   In her mind, a large group of people had come in the door at the same time for a party celebrating the new sun room and remodeled deck.  It was Good Friday.  I went with it enough to ask if they liked it.  She said they did.  I asked her to include a request for donations to pay for it the next time there was such a gathering.  She laughed.  I described the truth to her.   There was no party, Lisa, Denis and I had just watched the NCAA basketball tournament final — a great game!

She seemed to accept that description of reality.  It just seems to me to be better to speak the truth in love to hallucinations/dreams/delusions.  It makes sense to me that the more truth in those of us around Mary Ann, the more secure she will feel, even though the truth runs counter to what she is convinced she has seen or heard.  It would be too hard to try to keep track of anything other than the truth. 

Mary Ann slept well last night.  She has napped some during the day.  In general, she seems to do better with hanging on to reality when she is well rested. 

Her nap time gave us a chance to continue a task that started yesterday when Daughter Lisa and Son Micah were here together.  We began going through boxes.  What a frightening task — overwhelming.  There are so many boxes of things, so many decisions to be made about what to keep and what to give away and what to throw away.

Daughter Lisa is now a professional in the area of organizing.  She has always been the most organized person I know.  Now she gets paid to do it.  Gratefully, she is not pushy about it.  I had to open the door to this task.  We carted boxes from the basement storage area to the garage and began going through them.  We brought Mary Ann out into the garage to look at the contents of some of the boxes.  She said her childhood was there when she looking into a large box of dolls, mostly disintegrated after being stored for so many decades. 

There are some complex dynamics to what we are doing, given the time in our life and Mary Ann’s circumstances.  There is an element of sending our things on their way to our Children and Grandchildren, since we are late in life and Mary Ann is so vulnerable.  Since Mary Ann lives as if death is not a part of her reality and my health is still good, we are not ready to let go of things that have a sentimental attachment.  Actually, Mary Ann is not very sentimental, so it is easier for her to pitch things. 

It is a good thing that our space is very limited in this little townhome, so we are forced to let go of things we might try to keep if we had more room.  Somehow the combination of the need to move out a full cabinet due to the addition of the sun room, Mary Ann’s decline in these last few months, my retirement, and just the weight of what we have accumulated has pushed me over the edge of procrastination and into the throes of purging. 

At the moment, we are making some progress.  The task is huge.  I am hoping now that we have started, to keep momentum going even after Lisa and her family have headed back home.  It is much harder to get motivated on my own, and to make enough progress when Mary Ann is awake and in need of my help. 

Tomorrow we plan to continue the task.  I hope it is a productive day.

 

April 4, 2010

Mary Ann’s Tears Flowed

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , |
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I have very seldom seen Mary Ann cry.  This Easter morning as we sat together with Daughter Lisa and her family in the pew during the Easter worship service Mary Ann’s tears flowed. At first, I just thought her nose was running when she indicated that she wanted a Kleenex.  Her nose has been running for the better part of two decades.  It wasn’t until later in the service when handing her a Kleenex that I noticed tears on the inside of one of the lenses of her glasses.

She went through many Kleenexes as the service went on.  After church at one point when we were alone together, I asked what she was thinking about in the service.  She answered, “Nothing good.”  Then later when we were at home, I asked if she had been thinking about the chance that this might be her last Easter.  I thought maybe the music and language of the day in message and prayers and music and hymn texts had allowed the reality of her situation to finally sink in.

She said no.  She said she was thinking about Daughter Lisa.  She had managed to tap into the delusion/dream that Son-in-Law, Denis, was divorcing Lisa.  I explained again that what she was thinking must have come from a dream, since Lisa and Denis were solid and secure.  She seemed to accept my explanation.  Later in the day, she seemed to be drifting back into that delusion, but she caught herself and moved back into reality.

I talked with Lisa and Denis about it tonight.  Lisa will see if there is some way to ease into a conversation that might reassure her Mom of the strength of their marriage.

Our Son Micah and his family came early today so that he could fire up his smoker.  It took all day, but we had the best Brisket and Pulled Pork that I have ever had.  We have prided ourselves in liking only the best of the BBQ places.  We lived in Kansas City for fifteen years.  KC has some of the best BBQ in the country (in my humble opinion). This was better than anything we have had at any of the best BBQ places around.

It was a great day  The weather was outstanding, the family was together, we got to church, and we had a great meal.  I was too tired to write last night, and this is all I can handle tonight.  It is off to bed in hopes of a decent night’s sleep!

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

 

April 2, 2010

Finally Got to Church

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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It felt good to be with other people in worship at the Good Friday service at noon.  The events remembered this week are at the core of what my ministry was about those forty years.  The events remembered this week are what provide access to a relationship that shapes my world day by day.  The events remembered this week heal my sometimes wounded spirit, wounded more by my own thoughts and actions than those of anyone else.

I was bummed yesterday afternoon when dressed and ready to attend the Maundy Thursday service Mary Ann’s circumstances did not cooperate.  That worship service has always been one of the most powerful in the year.  The words and, more importantly, the actions of that liturgy reveal the healing of wounds and the consequences of that healing.  The traditional liturgy as I have done in my years in the ministry includes an action that provides a painful look into the mirror, followed by words that create the freedom to begin again and write a new story for our lives.  There is a time in the service when one action, the foot washing, demonstrates that new story as one of service to others.  There is a meal called Holy Communion or the Lord’s Supper.  There the joy of community with one another and our God is celebrated.  We become family in the best sense of that word.

It was hard not to be there and draw on the words and music and actions that speak so powerfully to my spirit.  I was grateful that circumstances here at the house allowed the possibility of a corporate worship experience today.  While we have been able to get out of the house for one thing or another, most of the time it has been in accord with Mary Ann’s readiness.  Other than her Tuesday morning group and most of the doctor appointments, we have not often been able to get to something with a specific scheduled time.  Admittedly, that has been one of the challenges for me, since I have tended to be a planner.  I no longer have a shred of control over what we do and when.  The Parkinson’s and Parkinson’s Disease Dementia are currently running Mary Ann’s and my schedule.

I was too tired to stay up and write a post for the blog last night.  The night before had been one of those nights filled with needs, up many times, and then up very early in the morning.  Mary Ann had a couple of long naps during the day.  There were some hallucinations/delusions beginning a bit.  After she had been in bed for a while last night, she asked if the Thursday people had gone yet.

Today was another fairly busy day.  The electricians came and put up the ceiling fan and outside light.  They did so during a pretty noisy thunderstorm.  Then Hospice Aide Sonya came to give Mary Ann her shower etc.  We managed a quick lunch for Mary Ann before the noon service.

Then in the mid-afternoon, Mary and Arlene came over to check out the project and visit for a while.  They were followed by Hospice Chaplain Ed.  Admittedly, Chaplain Ed does more to provide me with conversation, than to do any sort of pastoral counseling for Mary Ann or for me.  I enjoy the visits.  In that way, I guess the conversation is therapeutic.

Now that the ceiling fan is in and the waterfall is fully lighted, I am getting even more pleasure from it.  It is hard to describe how calming and refreshing the setting is becoming.  More samples arrived today, so Mary Ann is having more input into the color scheme.  She seems to be enjoying the project more and more now that it is almost fully complete.

Our Daughter, Lisa, and her family from Louisville, Kentucky, have arrived at our Son, Micah, and his family’s home in the Kansas City area.  They will come here tomorrow afternoon to stay for five or six days.  We will have a lively place for a while!

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

 

April 1, 2010

Busy Day

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , |
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First came Volunteer Maureen with a decorated basket fill with candy and dozens of home made cookies, along with some spaghetti for the freezer.  If that is not enough, after spending a couple of hours with Mary Ann, she left and returned with three containers of fresh strawberries with the greeting, Happy Easter.  We certainly are treated very well!!

Next came Edie, Paul and Shari for our Spiritual Formation Group.  For the first time in months, we were able to sit outside and enjoy the newly remodeled deck filled with the constant sound of water spilling over the rocks of the waterfall.  That and the birds accompanied the sound of the garbage truck and weed eaters.  What a rich environment for exploring mechanisms for allowing the awareness of the presence of God to wind through our days.  That two hours weekly has a profound grounding effect that helps sustain me during the unsettling times as well as filling with meaning the ordinary moments.

Shortly before the Group meeting ended, Bath Aide Zandra came to give Mary Ann her shower, wash her hair and get her dressed.  Apparently all went well.  We held off on morning pills until after Zandra was done.  That way we avoided the fainting spells that seem to be triggered when the meds first kick in.  There was some fainting later in the day, but it was very manageable.

When all those folks had left, a call came from Hospice Social Worker Kristin for her monthly visit.  She came over and, as usual, she asked lots of questions about how both of us were faring in our situation.  With all vagaries of Mary Ann’s cluster of medical problems, we seem to be healthy and secure — a credit to the support we get from so many folks.  During her visit, Volunteer Coordinator Mary phoned that she and Arlene would like to come by on Friday for a visit.  I could report that to Kristin as an example of the many folks who care for us and brighten our days.

Next came the Sister-in-Law of Jerry, our Remodel Contractor.  She is a gifted painter, who on very short notice was able to prep the ceiling for the electrician who, hopefully, will come soon to install the ceiling fan.  Actually, she was here while Hospice Social Worker Kristin was doing her task with us.

After Painter Diane left, Stacey came to talk with us about blinds and colors to paint the interior of the upstairs.  She brought wonderful ideas and helped us talk through some things.  Mary Ann was fully involved in the discussion, especially the discussion about colors of paint.  Mary Ann has an exceptional eye for colors.

After Stacey left, procrastinator that I am, we went out to eat using a promotional $25 gift certificate that I have had since before Christmas.  Today was the last day it could be used before expiring.  We ate a $34 and change worth of meals, that ended up only $4.61 (I realize the math doesn’t work, but the way the tax was applied also made a difference).  Yes, I gave a tip based on the charge before the discount.  The meal was at a good restaurant here called the Brick Oven.  Mary Ann allowed me to reach across and help her get the food to her mouth after she had struggled for a while.

After, of course, a stop at Baskin & Robbins, we got home to meet with Contractor Jerry who was there finishing up a couple of little things.  The main reason for the visit was to pick up the check for the work they did on the sun room and the deck.  There goes that inheritance, Kids!

Speaking of the Kids, Daughter Lisa called.  We got to talk with five year old Granddaughter, Ashlyn, who told us they were going to try to come a day early, which is only a couple of days from now.  They will arrive either late on Friday or early on Saturday if they stay with our Son and family in the Kansas City area before arriving at our house.  Needless to say that news lifted Mary Ann’s spirit as well as mine.

The day concluded with some deck sitting time after Mary Ann headed to bed.  Deck Therapy is one of the most effective tools for helping me keep perspective and fold into the day the support of the One who gives me breath.  I guess the day began and ended with the birds and the waterfall each providing their uniquely healing sounds.

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.

 

March 31, 2010

Will They Return?

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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The birdfeeders are back up.  Will they return?  Other than the last time we had a snowfall (birds are fowl weather friends — sorry, bad pun), there have been few birds.  There has been too much activity with the construction.  Now that it is done and the bird feeders are back up, will the birds find their way back?

They will need time.  Birds can be very fickle.  If there is not food available when they want it, they will just find their way somewhere else that is better stocked.

Since the weather is so warm and the deck is finished, we are going to try having the Wednesday morning Spiritual Formation group outside.  We begin at 7:30am.  It is likely to be pretty chilly then, but it should warm up quickly.  There will, of course, be lots of hot coffee to warm our insides.

The workers completed most of the last tasks in the remodel job.  The cork floor is now laid in the sun room.  The screens are in, so we could keep the door open for most of the evening tonight.  The sound of the waterfall is loud and clear when the new sliding glass door is open. Everything looks better than I had even imagined. I spend as much time standing on the deck this evening as I could while still keeping an eye on Mary ann.

Mary Ann had a difficult first half of the night last night and slept in until about 11:30am.  During that time, CPA Twila came by with very good news on our taxes.  Retiring and not being able to work part time has the beneficial side effect of pretty much eliminating any tax liability.

Mary Ann ate breakfast at lunchtime.  She decided that she wanted scrambled eggs, bacon and toast.  I managed to get that accomplished, even adding some shredded cheese to melt on top of the eggs.  Volunteer Tamara had brought us a dozen farm eggs last evening, the ones with the deep yellow yolks.  They are wonderful.

After a hearty lunch, Hospice Nurse Emily stopped by.  Mary Ann’s blood pressure was high as usual, 172/108.  There was a little fainting.  in the morning. The daily task I thought had come to a conclusion continued today.  Mary Ann has been eating pretty well lately, and the intestinal activity reflects that.

Mary Ann wanted Chinese (Sesame Chicken) from the Chinese food counter at the grocery store.  After eating a healthy portion of the rice and the chicken (and Crab Rangoon), she ate about 60% of the two scoop treat from Baskin & Robbins that she had declined when I brought it home last night (too close to bed time).

She folded shortly after supper and headed to bed.  I need to get to bed also, since preparation for the morning group begins early.

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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