January 13, 2010

Eye Problems Emerge

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , |
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It was an odd night.  Mary Ann struggled with the hallucinations and restlessness again last night.  I was up late working on last night’s blog post. After settling, she slept reasonably well.  I got up this morning to get her ready for Bible Study.  Her need to sleep trumped her will to get to Bible Study.  It was clear that she would not be able to get up.

I had showered and cleaned up in preparation for getting her ready to go.  When it was clear that she would not be going, I laid back down on the bed, since I had accumulated a need for sleep also.  It was not until almost noon that I woke up.  She got up about forty-five minutes later.  As I was getting dressed she asked if we could use the Visine again this morning.  She had not yet opened her eyes, which is not unusual for her — one of the collection of problems that come with the Parkinson’s and the medications used to treat it.

When she lay down for me to put the Visine on her eyes I saw it.  There was a swelling about the size of a small marble, more accurately, the size of a garbanzo bean (how is that for descriptive) in the corner of her right eye next to her nose.  It looked as if a tear duct might be clogged.

Mary Ann has had problems for a long time with her eyes.  She has had the struggle to open them frequently.  They have on occasion started watering profusely.  It has not been unusual for her to ask for the Visine.  In recent weeks sometimes there has been a large quantity of matter at the edge of her eyelids, usually her right eye.

Today’s swelling precipitated the call to the Ophthalmologist (an Eye Doctor with an MD).  At first the call was a little uncomfortable.  The receptionist seemed almost annoyed that I was calling about an appointment.  She tried to get us to go to our Primary Care Physician or Optometrist first.  I made the point that we would just end up back with the Ophthalmologist.  I had explained what was going on with Mary Ann, and finally she said she would try to talk with the Dr.’s nurse.  Gratefully, when she returned, there were a couple of options for tomorrow.  We will see the Doctor at 2pm.  I was puzzled that from the moment the call began the tone of the receptionist seemed to suggest that I had no business calling to get an appointment. I have met the doctor before, years ago when I had a cyst on an eyelid removed.  She seemed very pleasant and very competent.

This afternoon we had another appointment with Stacey about the remodel.  She brought some great options for window coverings for the new sunroom, and a book of samples of cork flooring for that new space.  The look of the cork, its durability, the warm feel of it, its ease of installation and its ability to cushion a fall have all combined to convince me that the cork is the way to go.  One thing drawing me to it also is that it is not one thing pretending to be another.  Ceramic tile would hurt Mary Ann if she fell.  The laminates look great, but still try to look like something they are not.  There is more deciding to do, but we seem to be progressing.

In reflecting in last night’s post on my retirement and the grief work that needs to be done as I let go of a life-long career and identity, I concluded the post this way:  “I now serve here at my house.  The need here is clear.”   The grief work that is going on at this point in my journey involves letting go of what has been.  It also includes making the transition to what my life is about now.  I suspect that transition is not yet complete.  One of the reasons writing these posts is so helpful is that doing so provides me the opportunity to gain a better understanding of what is going on in my own heart and mind as we tackle the Parkinson’s and its consequences in our lives.  Sometimes my mind is in one place and my gut in another in acceptance, feelings of fulfillment, and finding meaning in what we are doing her together.

The journey goes on, the processing of each experience is another step in that journey.  Just as is so at this time of the year in the thawing streets of this city in Kansas, there are a lot of potholes to be negotiated.

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

 

January 12, 2010

Grieving Loss of Former Identity

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She started trying to get up for the day at 3:30am.  It was all I could do to convince her to lie down and stay in bed.  Every time she needed help of any sort after that, she tried to get up and head to the table for breakfast and pills.  Finally, some time before 7am she/we got up.  The usual happened.  By the time the Bath Aide left, she was dozing in her chair.  I got her to the bed and she slept about three hours. 

Yesterday morning (Sunday) there was a Volunteer with Mary Ann, so that I could have some respite time.  I went to the lake to check out the Eagles again.  There were only a few, and the river was frozen offering them nothing on which to prey.  It was still a spectacularly beautiful day with the snow cover and the bright sunlight. 

When I got home, someone had dropped off the new Pictorial Directory for the congregation from which I retired.  We are still members.  We worship in the Sunday Evening Service, since it is the most easily accessible for Mary Ann due to the lack of a crowd and the time of day.  That service also provides a lower profile for my presence as the former Pastor of the Congregation.  Having followed two long pastorates, I know what a welcome gift it is to a new Pastor to be given the opportunity to settle in without the former Pastor around vying for attention.  I was given that gift by the two pastors I followed earlier in my career. 

I looked through the new Pictorial Directory.  It seems to be well done.  There were folks pictured who have been members for  years and some who were new to me.  There were some who just come for the pictures, but no longer attend church.  There were many whom I have not seen in the year and a half since I retired because they attend the morning services.  I miss them.  Members become extended family to the Pastor, especially since so often the ministry involvement comes at times in their lives when there is a certain level of vulnerability.   

The front section of the Directory was filled with pictures of the Staff, both paid and volunteer.  There were classes and worship events and gatherings of all sorts pictured — group after group.  What was exactly as it should be was that, of course, I was not in any of them.  That fact is evidence that what I sought has happened.  The Congregation is going on without me.  It is being led by a very capable Pastor, who is doing effective ministry.  All is as it should be.

If that is so, why did my insides hurt so much yesterday afternoon?  The answer at one level is obvious.  I was just doing some more grieving.  The visual impact of the new Directory was the verification that I am no longer a factor in the life of the Congregation.  What I sought when I left has happened.  It is a good thing.  The necessary letting go is just hard to do. 

There is another level  of grief that was deeper.   Looking at the pages left me with the sensation that it was as if I had never been there.   Understand, the folks with whom I interact from the parish are always gracious.  My feelings are no different from those of anyone who has left a career to move on to something else.  Yesterday afternoon I thought about the Pastor I followed in this parish after almost thirty years of ministry.   I wonder if or how often John had those feelings of grief. 

What happens when most Pastors retire is that they continue to serve in their profession, just in other venues.  Circumstances have not allowed me to continue in my profession in any way.   As a result, Sunday afternoon was just another time of grieving the loss of a life long career, one that served to define my identity.  This is the sort of grief work that can only be done by the person who has experienced the loss. 

I guess I was surprised at the intensity of the feelings that were triggered on Sunday.  It helped to attend church later that evening and hear the Vision of the new Pastor and the Leadership for the future direction of the congregation.  I resonated with the assessment of the current need and the commitment to tools that can help meet that need.  The grief work I continue to do does not include any perception of losses in the health and quality of ministry at the congregation I no longer serve.   It is just doing the work of accepting that I no longer serve there.  

I now serve here at my house.  The need here is clear. 

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

 

January 9, 2010

The best laid plans have aft gang aglay

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The following post was written on Thursday, January 7, 2009, but not published until Friday, January 8, due to Internet problems:

The best laid plans sometimes go astray. Feeling out of sorts yesterday, I went to bed early in hopes of a good night’s sleep providing an ointment to salve my sore spirit. Demon Lewy Body Dementia (doesn’t the word dementia derive from the word demon) had other plans.

Mary Ann simply could not sleep – for the entire night. I was involved with her needs in some way, two to three times an hour. There were the commode trips. There were two snacks, some drinks of water. There were lots of times sitting on the side of the bed, needing to be situated again when lying back down. She usually can’t handle the covers without help.

There was a long interaction in the middle of the night when she wanted to go out into the Living Room to sit and try to read. The problems with that idea are many. First, when she is up, she still needs help often with the same needs she has during the day. Then, the prospect of sitting up at night for a long period of time, then sleeping during the day risks shifting nights and days, making our system almost impossible for both of us. Those of you who have raised little ones have probably experienced the time when the tiny ones seemed to switch nights and days, making your lives pretty tough for a while.

After wanting to get out of bed multiple times throughout the night, when it got to be seven in the morning, she needed to get up. As usual after a bad night, she took her meds, had breakfast, and in an hour or so ended up back in bed sleeping soundly. I am of course wide awake and writing this. It is my understanding that trying to compensate for lack of sleep at night by napping during the day does not actually help, in fact just makes the sleep deprivation problem worse. It is harder to get to sleep then at night. That and my general inability to nap during the day results in my staying up rather than napping while she is napping. The general wisdom is to go to bed at the same time and get up at the same time each day. The general wisdom does not take into account multiple times up during the night in between those two times.

Of course, the lack of sleep is increasing the problem with hallucinations. There were the people in the house again last night. This morning there were a variety of things she saw outside the windows, and in the house things that needed to be picked up, tiny chains in her hands. There was one of those interactions in which she was talking as if it was just an ordinary matter while saying things that made no sense at all. About half way through lunch, she started to get up. I asked what she was going to do. She said she was going to get her Pepsi. The cup of Pepsi was sitting at the top of her plate with the can in back of it, just as it is for every lunch.

On the other hand, she asked if this is the day Stacey would be back to talk about the blinds and painting the interior of the house. She remembered that correctly. Then she suggested that we paint the interior a light blue, just a touch of blue. Because so often the lucid moments come, I try to work hard at tracking when her words are not computing for me. Sometimes a different word will come in place of the one intended. Yesterday when she suggested we adopt the cat she was seeing with her “magic eyes” (her words for the hallucinations when she accepts that they are hallucinations), she said maybe that cat could be “adapted.”  It took a moment for me to catch what she meant.

In spite of the difficult night, at the moment, I am feeling better today than yesterday. Maybe it is that adrenalin is playing a bigger role in sustaining alertness today. I just took a break from writing while Mary Ann is napping to do a bit of shoveling outside so that I can get to the birdseed. I have fed and watered the birds. It is invigorating outside since the wind chill is between twenty and thirty degrees below zero and the new three or four inches of snow is blowing around. The air temperature is predicted to reach a high of five degrees above zero and a low of eight below tonight, follow by a low of twelve below tomorrow night. Needless to say, we will not be going out with Mary Ann in the wheelchair today or tomorrow. The most we could do is head out in the van and have Mary Ann stay in the running van while I run into the store. There are a number of things on the list, but none that we can’t survive without.

The toughest thing today so far is that the telephone land line is out, eliminating out DSL access to the Internet. I certainly do feel disconnected to the outside world. I forgot just how much time I spend connecting with others through email and the Worldwide Web. For being pretty much technologically illiterate, I sure depend on the technology a lot.

Right now, my interaction with the outside world, is enjoying watching the dozens of birds that are enjoying the fare I have provided for them. We did end up going out in this weather. I discovered that we needed to return some videos. We went to the grocery and I ran in to get the items. She decided that she wanted take out Chinese from the grocery in spite of the fact that I had a roast, potatoes, onions and carrots cooking in the crock pot. It frustrates me that Mary Ann so often will not eat what I cook, even when it is something she used to eat and enjoy. I decided it was not worth arguing with her, since my goal is that she have plenty of nourishment. She ate the Chinese and I had the roast and veggies.

The above was written yesterday on a Word Processor since the Internet was not available.  The really bad night was the night before last.  Last night I went to bed even earlier.   Until about 12:30am, Mary Ann was disturbed by vivid hallucinations.  There were the people again.  The little girl was there.  She was confused about the time.  At one point while lying in bed she said our Daughter, Lisa, was on the phone.  She had no phone. 

After she finally went to sleep, she slept the night.  I got up at 7:30am to get ready for the phone line repair person who was due between 8am and 12pm, but came at about 1:30pm.  Mary Ann slept in until after 9am.  After the commode trip, she went right back to bed.  She was barely awake for the commode trip.  She slept until almost noon.  I think it helped some since so far today the hallucinations have not been as many and as vivid. 

The cold continues, so we stayed put today.  It will be even colder tomorrow so I suspect we will do the same. 

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

 

January 7, 2010

Just Out of Sorts Today

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She looked over toward the walker leaning against the rail around the steps to the downstars.  She said she saw a cat.  Then she said maybe we should adopt it. 

At first I responded with the usual, “we don’t need the hassle of taking care of a cat.”  Then a little while later it dawned on me that there was a more appropriate response.  I told her that it would be fine with me if we adopted the cat she saw.  I don’t remember the exact wording, but it was something like “nice try.”  I added that it would be perfect since there would be no food to buy or litter box to clean.

There was another time that she was talking about something that I could not follow.  The hallucinations were not as constant as they were two days ago, but they were more present today than yesterday.  Yesterday especially, it was hard see her struggling so to track.  She wanted to make a list.  I got her a note pad and a pen.  She did write something about birthday cards.  (I have been trying to remember at the right time to phone one of my Brothers, whose birthday was January 3.)  There were a couple of scribbles after that, but when I offered to help in the writing, she got the sort of look that seemed to say, I have important things to write on the list, but I can’t get them into my mind. 

At those moments she is so helpless, and I am helpless to make any real difference.  So much of the time she has no words, then when they do come, she gets lost in what she was trying to say.  Sometimes what she says makes no sense, and she realizes it in mid sentence.  Other times she remembers things accurately and is right on with what she is saying. 

Maybe that is part of the reason.  Maybe it is the weather and the prospect of being homebound again for a few days.  Maybe I am just tired from the lack of an uninterrupted night’s sleep.  Maybe it is just getting tired of the constant demands of the task.  Maybe it is guilt over what I am not doing that I should be doing or the lack of patience with her.  Maybe it is the short days and long nights at this time of the year (Seasonal Affective Disorder).  I have just  felt out of sorts today.  I think Mary Ann has too.  I asked her if she was feeling goopy (technical medical term) or depressed.  I thought her lower lip was revealing that it might be so.  Her words did not confirm it.  She did decide to take a nap, indicating that she was tired.  It is hard to be sure about the lower lip sticking out as a non-verbal sign of sadness since that is one of the facial changes often brought on by Parkinson. 

Whatever is going on today in both of us, she is in bed and I am going to try to get to bed early tonight.  Maybe some extra sleep will help. 

By the way, those who read this blog and happen to be members of the parish from which I retired, let me clarify that my faith remains strong.  I have no doubt of the Lord’s love for me.   My future is certain and my purpose clear.  Even the Lord Himself experienced times he felt overwhelmed and needed to get away.  He got angry.  He cried.  He felt pain.  He expressed feelings of abandonment on the Cross.  It is a comfort to me that I don’t have to be afraid of my feelings however up or down they may be.  In fact my faith frees me not to run away from them.  I can own up to them, lean into them, experience them fully and move through them to the other side.  My relationship with the Lord is not sustained by my feelings one way or the other.  My relationship with the Lord is sustained by the Lord. 

I do not ask of those who read this blog that you share my faith.  I hope that what you read in these posts is helpful to you whatever your spirituality or lack thereof.  I share my faith on occasion because it is for me the key to my survival and the power that fills my life with meaning in the face of circumstances that seem bent on stealing our lives from 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.

 

January 5, 2010

Some Days are More Frustrating than Others.

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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I am not completely sure why.  Some things are harder to accept than others.  There is one visual cue that removes all my ability to keep things in perspective.  It takes me right up to the edge of my ability to cope, and then pushes me over.

There she was, half way across the bathroom, walking with her pants around her ankles.  I had stepped out for only moments to give her some privacy.  On the way out, I asked her to please remember to push the button when she was done and reminded her not to get up until I arrived to help her get up.  She did neither.

That visual cue seems to release my deepest fears that the next fall will be the last one.  It surfaces every feeling of frustration that comes when her choices seem to fight against the very help I am trying to provide.  That visual cue pushes me over the outer edge the confidence that I can care for her here at the house until the end.

I got her dressed, put her on the bed, and had to leave the room for five or ten minutes to gather my composure and try to regain perspective. I wonder if part of my reaction is a safety valve blowing off steam to keep the boiler from exploding.  I wonder if it isn’t a grieving process going on that I ignore until something like that visual cue shatters my illusion of control.  I wonder if part of it is my refusal to admit to myself just how hard this is.

Yesterday morning when I went outside to clear the drive and sidewalk of snow for the Volunteer, she tried to get up from her chair, fell and took with her the table in front of her, knocked the computer monitor to the floor along with a cup with some juice in it and a number of other things on the two tables around her.  She was lying in a heap among all of it. Gratefully, as always, she was not hurt at all.  I was upset that I couldn’t so much as go outside to shovel the sidewalk without her getting up, creating the vulnerability for a fall.  Then I felt responsible.  While she couldn’t remember why she got up, I had not gotten her a new box of Kleenex, I had not gotten her fresh water, I had not taken the audio receiver with me outside so that I could hear the electronic doorbell, which she would not have pushed anyway.  I realized again how hard it is to anticipate every impulse need and provide for it so that there will be no need to get up.  It is hard to anticipate and cover every impulse need of another person — one who cannot tell you those needs in words.

She has been having a difficult time keeping things clear the last couple of days.  There are flashes of lucidity, but most of the time, it the hallucinations have continued, verbal communication has been virtually gone, and there have been times of great confusion.  At supper tonight, after working on the baked potato on her plate for a long time, mostly with her fingers, I asked if she saw the meat.  She said no.  A large piece of meatloaf was there on the plate right next to the potato she had been working on. She has often been in eyes closed mode.  She will be acting in every other respect as if she is doing things normally, except that her eyes are slammed shut tightly.  Often when that happens and I ask her to open her eyes, she will answer that she can’t.  I have learned how to walk her from one place to another when her eyes won’t open.

I just came back from the bedroom.  Mary Ann had gotten up on the side of the bed.  She was trying to pick up needles that were not there.  As we were sitting there, a couple of times she told someone to stop pulling on the quilt hanging on the wall a few feet away.  She asked we how soon we would be getting out of here.  Then she asked how we were going to get all the furniture back.  I asked if she was thinking that we were in a different place from our home and that the furniture had been moved here.  She said yes. Like Capgras Syndrome, this is a Delusional misidentification syndrome.

I just went back again.  This time she asked me to take the girls out of the bedroom.  When I asked if they were our Granddaughters, she said no.

At the same time, earlier today when I mentioned the library, she suggested that we eat lunch there.  Since we couldn’t find a parking place, we at at Bobo’s Drive-in.  At the library, she managed to pick out two books from the large print section. We had sundaes at G’s after the library.  When we got home she ended up wanting a nap.  After an hour and a half, after taking medicine and using the bathroom, I took her out to watch television.  She got up and headed back to the bedroom to nap some more.I had to wake her up for supper.

Back again. She is just having a terrible time accepting that it is night and time to be in bed.  She wanted to get dressed this time.  It is about 12:15am at the moment.

I have just been with her a few more times.  The last time included a snack and a paper towel to wipe up something that was not there.  It is about 1am now.  I am wondering how much of the night will be spent with the delusions and hallucinations.  Last night we were up quite a number of times.  There has been very little sleeping in happening in the last week or so.  The interrupted sleep is not helping the coping skills, nor is it helping the delusions and hallucinations.

I am going to edit this now and get to bed in hopes that my presence will help.  There is no good reason to hope it will help, but I am too tired to stay up any longer.  I guess interrupted sleep is better than no 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.

 

January 2, 2010

Happy New Year 2010!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

December 25, 2009

Christmas Blizzard

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , |
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When I stepped out on the deck a short time ago, the snow squeaked when I walked.  I have seldom heard that squeak since I headed off to college in the fall of 1961.  Actually, I did have opportunity to hear that squeaking for my undergraduate years, since they were spent going to school in Milwaukee, Wisconsin and Northern Indiana.

The wind is howling through the trees.  The snow is blowing.  There is potential for over a foot of snow by morning and gusts of wind up to 50 miles an hour.  I felt an odd sort of nostalgia when I stood out there listening to the wind and feeling the cold and snow on my face.  I have no wish to live in a cold climate again.  When I step outside, I come back in right a way to enjoy the warmth.  Nonetheless, there are flashbacks to a time when I played endlessly in the snow, built snow forts, went sledding down every hill I could find in flat Northern, Illinois.

The Kentucky Crew, Daughter Lisa, Denis, and little Abigail and Ashlyn, headed off this morning to avoid the blizzard.  Otherwise they would have missed Denis’s family gathering and maybe a workday or two depending on travel conditions after the blizzard.  There is always a bit of separation sadness when the kids leave.  My Mother, even when we were older adults and she was in her 80’s, said that when we left after a visit, she would get in the car and go somewhere, maybe invite someone to meet her for lunch, to mitigate the sadness in the pit of her stomach.

I am almost glad for the blizzard.  It is distracting enough to take our mind off the time of separation sadness.  I am not glad for the timing of the blizzard.  We have missed out on every Celebration of Christmas in a corporate worship setting this year.  I am hoping to find something on the television or computer to help provide at least the illusion of worshiping in a corporate setting.

The changes in plans caused by the weather, something outside of our control, brings to mind a thread of discussion in the online group made up of Caregiving Spouses of those with some form of Lewy Body Dementia.  One of the members included the following quotation.

“The carrying out of a vocation differed from the actions dictated by reason or inclination. … The most beautiful life possible has always seemed to me to be one where everything is determined, either by the pressure of circumstances or by impulses such as I have just mentioned, and where there is never any room for choice.” Simone Weil.

The quotation was made in the context of reflecting on the acceptance of the Caregiving Role, immersion in it, and thoughtful wonderings about the prospect of having choice again should we outlive our Loved Ones.

The responses that followed included some blunt rejections of accepting the loss of choice and giving up other dimensions of the Caregiver’s life.  That thread has been very thought provoking.  I have written lots of words in earlier posts on this.  It was good for me to think again about what I am doing, the way I have chosen to do it, why I am doing it, and its impact on my quality of life.  I recognize that what I am doing as I reflect is very self-centered, but my reason for doing this blog is to help other Caregivers make sense of what they are doing.

Mary Ann’s needs are basic and constant.  It is not her choice that she have those needs.  They are just a fact of her life, and on that account, as her husband, my life.  Those needs do not leave much in the way of choice.  If I don’t respond to a need, there are consequences for her and consequences for me.

As in the quotation, there is not a lot of stress resulting from being conflicted about what to do from one moment to the next.  I simply respond as effectively as possible to the needs that arise.  There are few choices to be made.  What is at issue, at least for some of the respondents online is the struggle with giving up choice.

As I think about my circumstances, what has given me comfort and peace in living as a Caregiver, with few choices, is the reality that I have chosen this role.  There were other alternatives with varying degrees of difficulty in making them a reality.  I chose this role.  As I have said many times before, I chose it for my own benefit as well as Mary Ann’s benefit.  It does need to benefit her to accomplish the very thing that gives me satisfaction and creates meaning in my life, but when all is said and done, I am doing it for me.  I love her, I promised to live that love whatever came, I want to do things that help me feel good about myself.

I am also convinced that the quality of life does not depend so much on externals.  If we were traveling the globe together, we would be happy sometimes, sad other times, angry sometimes and at peace other times.  I am not so foolish as to suggest that people who are in horrible circumstances should buck up and be happy.  Even with our challenges, there are way more frightening realities out there.  I don’t know how I would feel or what I would say if things were worse than they are.  All I can say is that at the moment, I am convinced that I have as good a quality of life as I would have doing much of anything else, including playing all the time (which sounds boring to me).

There is one dimension to my situation that raises a question for me.  When I get up in the morning and look at our clear schedule, instead of longing for things to fill the day, I celebrate that I am not overwhelmed with too much to do.  For 40 years in the ministry, my average work week ranged from 60 to 70 hours.  I was on call (sickness, marriage and personal counseling, deaths) 24/7 to anywhere from a thousand to three or four thousand people when adding together members and their immediate circle of relatives and friends.  In the last years, while I did not take a directive approach, I was ultimately impacted and responsible for and responsible to a fairly large paid staff and a huge staff of volunteers.  Again, I did not relate directly to all of them, but by virtue of the role lived with the consequences of their choices.  The vast majority of time I had the joy of benefiting from their good choices.  That was not always the case.

In the last few years before I retired, Mary Ann’s needs consituted a full time job all the hours there was not a Volunteer with her.  There were regularly sleepless nights and always nights of interrupted sleep.  The job of Senior Pastor in a comparatively large congregation was exceedingly demanding in terms of time and personal stamina.

What I am wondering is if I might still be resting up from what had become an overwhelming load.  Even small tasks now can bring an almost PTSD sort of flashback to feeling overwhelmed.  Maybe I am settling in to having one focus of need since it is such a relief not to have loads of needs coming from numbers of directions.

One thing about the circumstances we are in, and the loss of choice in what I do minute by minute and hour by hour, is that I do not feel like a victim.  The circumstances are just that, objective realities that we must deal with.  Everyone has circumstances.  They just differ from one another.  These are ours.

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

 

December 23, 2009

Nap Day, Food Gifts and Wii

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

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

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

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

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

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

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

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

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

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

Time to edit and get some rest!

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

 

December 1, 2009

Sleepless Night — Domestic Duty Day

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I think it was around 3am that Mary Ann finally settled.  Then, we were up pretty early again in anticipation of the Bath Aide.  Mary Ann has done no napping today, and she did not go to bed early.  Some days she can sleep well at night, then have a couple of two or three hour naps during the day.  There seems to be no rhyme or reason to when there is lots of sleeping and when there is very little.

When there has been little sleep, I appreciate that I am retired and have no major public responsibilities that would be impacted by my sleep deprivation.  I guess driving is a public responsibility.  If you see a dark colored Honda van coming down the street, give it wide berth.  The driver may be dozing.

Today has turn into a domestic duty day.  It was not planned that way, a couple of things just converged on the day. Both the medication that thin her blood (aspirin and Plavix) and the mucous production increase on account of the Autonomic Nervous System being impacted by the Parkinson’ s and Parkinson’s Dementia, combine to create the need often to change the bedding.  Today was not the usual day to change bedding, but I noticed that even the mattress pad that is protected by two chux had some stains on it.

I got out a new mattress pad and put the dirty one in the downstairs utility sink along with stained bedding, and a two or three ladles of Oxyclean.  After soaking a few hours,  and then running it through the washing machine, it is all in the dryer at the moment.

Then the weather for today and tomorrow allowed working on a much dreaded task. The Ceramic tile floor in the bathroom is a dangerous weapon in a household with someone who has both balance and fainting problems.   After a nasty fall and subequent trip to the Emergency Room, followed by a couple of hours with the Ear, Nose and Throat Specialist trying to get the bleeding stopped, I realized that the tile floor needed something to soften a fall.

I found something called Snaplock, twelve inch squares of mesh made of a strong and supple plastic mesh.  The squares snap together.  The colors were nice and the squares were easy to put together.  The squares are impregnated with something to reduce the mold.  Of course the squares must be taken up and cleaned a few times a year.  The weather is important, since the tiles get washed in the driveway, and dried in the sun.  I scrub them with an old broom after spraying them liberally with spray cleaners that kill mold as well as cleaning the tiles.  They then air dry.  They are on the driveway tonight.  I will leave them there and bring them in after the sun has done its work.

The hardest cleaning task actually is cleaning the ceramic tile that has been covered by the mesh squares.  Mold eventually grows under the tiles.  There is lots of spraying (Tilex and Clorox Cleaner), scrubbing with the broom, and rinsing that has to be done.  It is certainly worth the effort to have the protection on the ceramic floor.  Any Caregiver whose Loved One is subject to falling needs to be sure and cover ceramic tile with something safer.  Gratefully, the Snaplock tiles come in very nice colors, so the result after putting them down is not unappealing.

Blood Pressure update:  Now that I have reduced in half the Midodrine in preparation for starting the new medicine, Mestinon, I am trying to track her BP more closely.  Sitting down at the table earlier in the day, her BP was 107/65.  Tonight while lying down I tried taking it with the electonic meter.  It would not read her BP but gave an error message.  That usually means it is too high for the machine to measure.  When I took her BP by hand, it was 240/120.  There was no doubt about when the beat started and stopped while listening with the stethoscope since the beat was so strong.

That is another example of just how dramatically her BP jumps between high and  low.  Tomorrow morning I plan to add the generic Mestinon.  I hope it works.  I don’t know how long it takes to reach the therapeutic dosage. We will just wait and see what effect, if any, the new medicine has.

As always, we will see what tomorrow brings.

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.

 

November 30, 2009

“I’m Disoriented”

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , |
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I just went back into the bedroom for one of very many times so far this evening to check on her.  When I asked her what was causing her to be so restless, she answered, “I’m disoriented.”

She has been moving around in bed this evening, lifting herself up on her elbows and looking around.  I have become conditioned to head to the bedroom when I see much movement on the 7″ baby monitor screen on my desk next to the computer monitor.  I move fairly quickly so that she doesn’t get up and try to walk on her own.  Especially when she first gets in bed after taking her night time meds, she is vulnerable to falling due to the drowsiness that is a side effect with a couple of the pills she takes at that time.

Clearly the drowsiness has not been enough to send her off to sleep tonight.  She did not sleep well last night.  It is surprising just how much impact one restless night has on her.  She has been doing lots more hallucinating today.  As usually happens, she got up early this morning, after not having slept much at all last night.  She fell a couple of times trying to pick up things that were not there.  She popped up often from her transfer chair, sometimes unsure of what she was getting up for. 

She went back to bed after being up a while this morning and slept about three hours.  I was glad she got some sleep.  The more tired she gets, the more she struggles with hallucinations, tracking mentally, keeping her balance when walking, among other things. 

Tonight, she is just struggling to settle down to sleep.  The last time I went in she said that she was feeling guilty that the house was not clean for the cleaning lady.  I reminded her that the monthly visit from Kristie would be Wednesday, and it is only Sunday evening.  Earlier, when I was getting her ready for bed, she thought she heard the voice of the main character on her favorite television program, the Closer.  She knows that the show airs on Mondays.  She was convinced it was Monday evening.  I reminded her that just an hour before then we had returned home from going to the Evening Service at church.  Somehow even that did not seem to satisfy her. 

The next time I came she was getting completely out of bed.  She said she was looking for things to do to get ready for the cleaning lady.  As we talked about it, she asked what I did to prepare for her coming.  I described the prep I usually do, taking things off the table so that she can get to the top to clean it, taking things off the kitchen counter, putting all the toiletries in the baskets on the bathroom vanity, just general straightening up to make her job a little easier.  I reminded her that there would be no point in doing that prep work until Tuesday evening or Wednesday morning, otherwise it would all be spread out again by the time Kristie came. 

It always seems odd to me when Mary Ann juxtiposes a very lucid comment (that the cleaning lady comes this week) and confused perceptions (what day it is today).  That is the nature of a Dementia with Lewy Bodies.  Parkinson’s Disease Dementia is such a dementia.  Unlike the general pattern of steady decline associated with Alzheimer’s Dementia, LBD changes for the better or for the worse very quickly.  Someone with LBD can be very lucid one minute and completely confused the next — then moments later return to lucidity.  That characteristic often causes friends and family who do not interact with the person with LBD on a daily basis to be fooled about how serious the disease is.  Those with LBD are notorious for moving into what we (Caregivers) call “showtime” when family or friends or strangers are present, creating the illusion that they have not problem at all. 

Again, it just surprises me to see how much impact one restless night can have.  She really has seemed to be very lucid the last few days, at least most of the time.  I guess I should read the last few days’ posts to be sure about that.  I forget so quickly from one day to the next how things have gone.  It is like trying to remember what you had for lunch two days ago.  Sometimes the routine things just don’t make enough of an impression to find their way into the memory bank, at least into the branch from which subsequent withdrawals can be made with ease. 

She has been in bed for about three hours now and has been restless most of the time.  The thought just crossed my mind that some of the restlessness may come from concern for our Daughter, who is having surgery tomorrow.  It is a surgery that is considered outpatient but will include one night of monitoring her during the first hours after the surgery.  Mary Ann may not be able to identify the true source of her inability to settle.

For the moment, all I can do is hope that she (and I) sleep better tonight than last night. 

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

 

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