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April 23, 2010

Refreshingly Normal Day

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

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

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

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

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

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

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

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

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

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

 

April 17, 2010

Good Days Come to an End.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

April 13, 2010

Privileged or Overwhelmed?

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , |
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Yes!!!  There has been an especially thought provoking thread of conversation in the last couple of days in our online group of Caregiving Spouses of those who have a form of Lewy Body Dementia.  What is shared there is just for the membership.  I will only comment in a general way what issues have been raised.

The group is a place where members can vent freely without fear of judgment.  We can whine, scream, cry; we can reveal what is going through our minds even if it is not very nice; we can complain; we can talk candidly about things that would gross others out; we can be matter of fact about matters that would frighten those who have not been in our shoes.

We all have a common enemy — the disease that is stealing from us our Loved Ones and at the same time the life we might have had were the disease to have passed by without stopping at our place.  The recent thread has ruffled feathers as members have disagreed on how to talk about what we do, the lives we have now that Lewy is part of the family.

Some talk about the unfairness of it and the pain and the waste of the life they wish they had and the ultimate defeat that comes at the hands of the disease.  Some write when they are depressed by their powerlessness, when they are grieving the loss of the person they love while that person’s body still needs care, while that person’s physical presence may be threatening, or simply vacant of recognition. Some feel like victims of things beyond their control.  Some cannot tolerate the thought of seeing the situation we are in as a privilege.

Some talk about the privilege of caring for their Loved Ones.  Some see the care being given as a choice made by the Caregiver.  They could have run out on their Loved Ones, but they have chosen to stay.  Some find satisfaction in what they are doing.  Some see their caregiving as their current job, providing them with meaning and purpose.  Some refuse to allow themselves to be victims.  Some make the best of the situation seeing positives that come out of it.

There is a continuum of feelings and perceptions that has the above attitudes at opposing ends.  For lots of complex reasons that have to do with people’s family of origin and life’s experience and world view, most of us gravitate to a certain place on that continuum as our home base.  With that said, at one time or another any of us can be at either end or anywhere between.

What is helpful is to have a place to go where there is permission to admit to being anywhere along that continuum — no apology needed, no justification, just understanding and acceptance.

I will admit that my home base lies in the place where there is acceptance of our lot being no better or worse than any other lot, just different.  I don’t feel victimized.  It feels very right to be enjoying a healthy relationship, fulfilling promises made.  I feel very privileged to be able to actually make a difference in the quality of life of someone else with actions, not just words and occasional gestures.  While I would not choose this disease for Mary Ann, I am grateful for the growth in our relationship, the strength of character it has brought to the surface in our Children and Grandchildren, the wonderful friendships of so many good people surrounding us with help and support, what it has taught me about real love, not the stuff in the movies, the depth of faith that has grown from knowledge to experience of the Presence of God and God’s unconditional love and acceptance moment by moment every day.  I wouldn’t trade my life for anyone else’s.

At the same time, I can scream in frustration and feel overwhelmed at any point on any day of the week.  When my Lewy Body Dementia Caregiving brothers and sisters vent I am with them.  When they suffer, I am with them.  When they celebrate victories, even little ones, I celebrate with them.  They reveal courage as courage really looks when lived in the throes of real life, not as portrayed in the movies.  It is courage that can be messy and ugly and smelly and scary and enduring and bold and beautiful.

Privileged or overwhelmed?  Yup.

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 12, 2010

What Does She Remember?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , |
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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?

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

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , |
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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

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , |
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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.

 

March 27, 2010

Reduplicative Paramnesia

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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Last night Mary Ann told me that they were trying to trick her.  They were trying to convince her that she was not in her bedroom.  That is a Delusional Misidentification Syndrome called Reduplicative Paramnesia.  It is the belief that a familiar object is actually a substitute for the real one.

Those whom Mary Ann calls the Thursday people were back.  I think it was they who were trying to convince her it was not her bedroom even though it looked just like it.  At least one other time during the night, she asked if the people had settled down yet. As I have mentioned before, I do not want to reinforce the delusions and hallucinations, but I don’t want to dismiss them since they are real to her.  I try to explain that they are not real in a way that I can see them or do anything about them.  Gratefully, she is not terrified by them.  Hospice Nurse Emily confirmed that today when she asked Mary Ann about the hallucinations.

The problems related to what information her visual cortex sends to her awareness are one of the signature symptoms of Lewy Body Dementia and the Dementia that comes to some Parkinson’s Patients.  It is the problem with delusions and hallucinations that often force the issue of using residential care.  As challenging as they can be, with the help of Hospice, I am determined to avoid any residential care other than perhaps a respite day some time. So far the hallucinations are not so strong and so constant as to be impossible to handle.

Today, again, there were multiple events of syncope (fainting) associated with trips to the bathroom.  I suspect that I held her up on the stool upwards of a half hour adding together ten or fifteen minute segments.  When Hospice Nurse Emily took Mary Ann’s blood pressure this afternoon it was 118/68.  That would be good for a twenty year old.  When it starts out that low, it can, of course, go much lower when she stands up.  I have been trying to manage the fainting without resorting to the Midodrine that raises it.  The high BP is so harmful to her heart and kidneys especially.  If it remains that low, I may need to reconsider restarting the Midodrine.  The Cardiologist has given me the freedom to decide whether to give her the Midodrine based on our quality of life.  The preference is to avoid using it.  Those sorts of decisions place a lot of responsibility on my shoulders.  Yes, I am the one with the best vantage point for making the decision, but I feel the weight of that responsibility.

Gratefully the fainting spells were over just before Hospice Aide Sonya arrived at 11am to wash her hair, give her a shower and get her dressed.  Sonya said that Mary Ann did fine. After the shower, we headed out to do errands and to pick up lunch for Mary Ann.  It was a favorite of hers, steak soup and lemon meringue pie from the Copper Oven.

Again after Nurse Emily left in the mid-afternoon, we headed out for errands.  During that run, I picked up some flowers for Mary Ann.  Daughter-in-Law Becky had won a commitment from me to get Mary Ann flowers regularly in trade for adding our cell phone to their account. Do you see why we think so much of our children and the ones with whom they have chosen to spend their lives?

Of course that trip had to include a stop at Baskin & Robbin’s.  Those of you who have been paying attention will probably want to remind me that late afternoon ice cream treats ruin supper and make for tough nights including lots of snacks.  I know!  But the ice cream tastes so good.  She went to bed not too long after 6pm, and yes she has already gotten up to eat a sandwich and some applesauce.  That was around 9pm.  I hope that is enough to get her through the night.

Even with all the ice cream, I reported to Nurse Emily that Mary Ann weighed in at 113 pounds yesterday.  That is down from the last time, 114.5, but up from the time before that, 112.5.  That is about 10% less than she weighed not too many months ago.  At least she seems to be holding her own at the moment.

There is one way in which her weight is an advantage.  Most of those who post in the online Caregiver Spouses of those with Lewy Body Dementia are women caring for their husbands.  A number of them in the last couple of days have talked about the predicament of having their almost 200 pound husbands fall, leaving them unable to get their husbands back up.  Most of them have had to call 911 to get their husbands back up.

I am grateful that Mary Ann is light enough for me to handle most of the time.  Reading those posts, I appreciate how easy I have it by comparison.  I feel a little wimpy when I have trouble getting her off the floor.  It all has to do with where she is located when it happens, whether I can get her in a position that allows me to pull her up and whether or not she is alert enough to help in the process.  When she is partially asleep or feeling very weak, picking her up from the floor with no assistance from her is almost impossible for me to do without risking damage to myself, thereby rendering our system unworkable.  We do have a Hoyer Lift to use if she is located in a position that allows me to get the sling under her.

It is getting late, and since i have had to get up fairly early each day to prepare for the workers on the remodel project, I am anxious to sleep in a little while tomorrow morning.  That will be up to Mary Ann.

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 26, 2010

Crash Day

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , |
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The only question was how long the improvements would last.  It was a somewhat restless night with confusion at various times during the night as to whether or not it was time to get up.  Mary Ann got up early this morning and the hallucinations were back.  They have continued.  The sheet that was over some items in the living room to protect from the dust of sanding sheet rock joints became someone sleeping on the raised hearth of our fireplace.

Since we had a day free of any appointments or plans of any sort, I suggested we go for a Bear Claw and coffee at Panera’s.  We started out pretty well.  After a while, Mary Ann began shutting down, and needed help getting pieces of the Bear Claw to her mouth.  Then as soon as that was done, she crashed.  She could no longer keep her head up.  She lay it down on the table at Panera’s.

I got her into the car and back home.  She wanted to go to the bathroom.  It was no small task to get her out of the car up the two steps and into her transfer chair.  Then I had to hold her up with very little help from her as I transferred her from the transfer chair to the toilet stool.  Holding her up while getting clothes down is especially difficult when she can’t help.  She had crashed enough that her eyes were mostly closed, and she had trouble figuring out where to put her feet and what to do next — even with words describing to her what to do.

We had some minor waste management issues but got the job done.  It was at least as difficult to get her transfered back into the transfer chair.  Getting her clothes back on took more physical effort than usual.  Admittedly, I was glad to get her into bed for a nap.  I am hoping that she will sleep off some of the confusion.

At times like this, I feel pretty vulnerable physically.  I am stressing and straining and twisting and turning in ways that certainly put my long term and short term functionality at risk.  The other night, Mary Ann was just not putting things together mentally when I was trying to get her on to the commode.  When we get to a certain point in transferring, she needs to sit down fairly quickly to make sure the flow ends up where it should.  I had to physically bend her body into the sitting position, and get her seated on the commode. She just could not connect with what to do.  That was one of the times I worry about what I may be doing to myself that has potential of interfering with our system’s ability to continue to work.

Mary Ann slept for about four hours, got up and ate.  She continued to seem confused and unsure of what she wanted to do.  We have been to the bathroom many times with as few as fifteen minutes in between.  Most often there has been no action once there.

She lay back down at abour 4:45pm.  She got up again at about 6:30pm for supper and some television.  She headed back to bed a little after 8pm.  I am hoping she will sleep better tonight.  We did not get ice cream this afternoon, so she did eat a half sandwich for supper.  That probably will not be enough to make it through the night.  As always, I hope for a restful night, but will, of necessity, accept whatever comes.

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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