January 17, 2010

Chaotic Visual World

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , , , , , , , |
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Is it a dream?  Is it real?  Are there one of them or two?  Do you see that?  Where did it go?  Who are those people?

I can’t begin to imagine how difficult it must be to sort out all the messages that Mary Ann’s visual cortex is sending to her awareness of what is around her. It would be one thing if all the messages were confused.  That would be horrible to experience.  The insidious nature of Lewy Body Dementia is that there is not just one consistent pattern of processing reality.  Someone with LBD or in Mary Ann’s Case PDD [Parkinson’s Disease Dementia – a Dementia with Lewy Bodies] can be absolutely clear and lucid and sharp mentally one minute or hour or day and virtually unable to comprehend where she is or what is being said to her the next minute — no exaggeration, the next minute.

The online group of caregiving Spouses of those with Lewy Body Dementia often contains posts from someone who is constantly searching the landscape for studies on LBD and related matters.  Coincidentally, the day after the appointment with the Ophthalmologist about Mary Ann’s eye problems, there was a post containing the notes from a presentation by Swaraj Bose, MD, a neuro-ophthalmologist at the Gavin Herbert Eye Institute, UCI.  Here is the purpose of his talk according to the Support Group Leader, Vera James: “His main reason for speaking with us was to give us a fair idea of the eye problems and why do the eyes behave in the way they do in Parkinson’s/PSP/Atypical Parkinson’s and what the caregiver can do.”

You can imagine how pleased I was to see that timely post. What happens is that the Lewy bodies, sort of like the lesions that build up from cholesterol, build up on neurons.  With LBD and PDD, they often attach themselves to the cells in the Visual Cortex. That is one of the ways LBD and PDD are different from Alzheimer’s Dementia [AD]

The notes from the meeting included this comment: “Visual perception is defective in probable DLB. The defective visual perception plays a role in development of visual hallucinations, delusional misidentifications, visual agnosias, and visuoconstructive disability charcteristic of DLB.”

Here are part of the notes:

Common eye complaints:
#1 – Related to disturbance of down-gaze PSP.
– Difficulty in coordinating eye movements while reading even if their vision is normal, especially through their bifocal glasses.
– Difficulty in eating because they cannot look down at their food on the plate.
– Difficulty in going downstairs and stepping off curbs.

#2 – Related to lack of convergence/ fast and slow tracking- Parkinson/PSP/ Atypical PD. (Note:  Convergence means to bring the eyes together)
– Difficulty in focusing, words run into each other.
– Hard to shift down to the beginning of the next line automatically after reaching the end of the first line.
– Inability to quickly move eyes up or down.
– Inability to track moving objects or maintain eye contact.
– Double vision. One eye sees one thing, the other eye sees another and the brain brings them together. Kind of the way 3D glasses do. When you have double vision, the brain isn’t bringing the eyes together to get the one vision.

#3 – Related to vision disturbances- Parkinson/ PSP/Atypical PD.
– Difficulty in focusing/blurry vision/visual hallucinations. Visual hallucinations can be in all of these illness. Some visual hallucinations can be from to much medication, but it can also be from a lack of dopamine in the cortex where the signal is fallen and gives false images and causes these visual hallucinations also. So not all visual hallucinations are psychotic. Other things that can also cause visual hallucinations are benadryl and OTC cold meds. They can also cause spasm.
– Changes of reading glasses at a quicker intervals.
– Decreased in contrast sensitivity (difficulty in distinguishing shades of gray) and color perception.

#4 – Eyelid abnormality
– Difficulty in voluntarily opening their eyes (apraxia)
– Forceful eyelid closing (blepharospasm) .  This is treated with botox.
– Decrease in the rate of blinking (3-4/min vs. 20/min)

#5 – Dry eyes
– Burning sensation, redness, watering, itching, excessive tearing, rubbing of eyes, blurry vision.
– Double vision with one eye.  Usually results in ‘ghosting’ of images or shadowing of images.

Those notes are almost an exact list of Mary Ann’s visual problems. The eyelid issues have been pronounced for a long time.  Often she just has not been able to get them to open.  We have learned how to walk together with her eyes shut with me holding her tight at my side.  Sometimes we stumble around a bit, but we get the job done.

She has commented more than once that she is seeing two of something.  She has asked often to go to the Optometrist to get new glasses.  The burning, redness, dry eyes, excessive watering, rubbing her eyes all happen often.  She has struggled with reading for a very long time.  I can only guess that a number of the problems listed above combine to make reading almost impossible for her.

I have talked often about the hallucinations she endures. In our online group there has been a thread of posts about our Loved Ones losing the ability to discern the boundary between dreams and reality.  Sometimes Mary Ann confuses with reality what she is hearing on the television as she lies in bed at night.  I would turn the television off, but she insists on having it on when she goes to bed.

One problem, described as “down gaze” seems to fit her problem with seeing the food when eating.  One suggestion mentioned in the notes is raising the food to eye level.  Last night I got out an old lap tray and a styrofoam cooler lid to make a platform at the table on which to put Mary Ann’s plate.  It looks obnoxious, but for today’s three meals, it actually seemed to help.  I am not sure how long Mary Ann will tolerate using it.  I will look around for something more aesthetically pleasing to use regularly.  I would love to find something portable enough to use when we are out, although she will probably not allow such a public display.

I plan to ask the Parkinson’s Clinic folks at KU Med Center if they have a Neurological Ophthalmologist on their staff.  One suggestion in the notes was that such a specialist be consulted.  Most of the rest of the suggestions in the notes are things that we already have been doing.

I am glad we ended up getting the appointment with the Ophthalmologist here.  It has helped us understand better what it is we are dealing with.  Again, I am learning more than I ever wanted to know.  I am sure that M.D. degree must be in the mail by now.

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 16, 2010

Get Over It!!!!!!!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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Maybe it’s Lori’s Chocolate Chip cookies (see yesterday’s post) doing their anti-depressant wonders.  Maybe it is having an almost normal (for us) night’s sleep.  Maybe it is reading yesterday’s post in the morning — late in the evening it is easy to become pensive and full of self-pity.  Maybe it is the dramatic contrast of all that we in our household have compared to the pain and suffering of tens of thousands in Haiti in the aftermath of the earthquake.  Maybe it is just getting tired of hearing myself whine.

Whatever it is, I need clarify for myself and any who follow this blog, that what I am feeling in regard to my change of circumstances from Senior Pastor of a large, thriving congregation to the full time primary Caregiver of my wife Mary Ann is just experiencing to the full the dynamics that come along with any major change in life.  There is a letting go of the past and settling in to a new set of present circumstances.

What I am experiencing in letting go of the past has nothing to do with the congregation from which I retired.  In fact, if anything, the wonderfully nurturing and loving people, the caring and competent Staff that actually served as my primary support group during the very toughest time trying to work full time and care for Mary Ann, the generosity of the Leadership of the congregation, the Volunteers (as many as 65 of them at one time) who stayed with Mary Ann all the time I was working away from the house (sometimes staying with her when I needed time to work at home), the Volunteers who have continued to stay with Mary Ann at times for a year and a half now since I retired from being their Pastor, the huge cadre of people there who threw the most fantastic party imaginable when I retired, all of that kindness just dramatizes the contrast between that part of my life and this part of my life.

Would it have been easier if they had all been mean and ugly to me?  I suppose in one sense it might have made me want to get out of there.  I have often reminded people who were hurting after the loss of a loved one, missing them so much, that their pain is a sign of the depth of their love for the one they have lost.  In that sense, I am grateful for every moment of gut-grieving.  It validates the value of the years of service in the church.  It reveals the depth of love for so many over the decades.  It is one way my gut reminds me that those years were good years.

Then, there is the truth of the matter.  No one asked me to retire.  There was plenty of reason as I struggled to do justice to the ministry and give Mary Ann the care she needed, for the leadership to say to me, “Don’t you think it is time for you to retire?” Instead, they said, “What can we do to help?”  I am the one who chose to retire.  It was without a shred of doubt exactly the right thing to do for me, for Mary Ann, for the Congregation and for the Lord who granted me an easy and certain decision-making process.

My struggles now are just the living out of that decision, the living through of the transition from one career to another, one identity to another.  What the whining in these posts reveals is the ugly underbelly of a very ordinary, flawed, self-absorbed, sinful (the Biblical word for such things) somebody going through that transition.  On the positive side of it, I am convinced that the journey will be completed more quickly and completely by allowing the ugliness to emerge without sugar-coating it — naming it for what it is.  That way it is less likely to sneak up later and cause some unpleasant and unexpected consequences — at least that is the hope.

I have always marveled at the enormous power and generosity of God to be able to and to choose to use people like me to actually do stuff to accomplish God’s goals on this clump of dirt on which we all live.  As those of us in the business know and will (hopefully) admit, most of what God does is not so much done through us as it is in spite of us.

Mind you the recognition of what I have been doing recently in these posts, and my own charge to “get over it” does not carry with it a promise that I will no longer whine and complain.  Why on earth do you think I am writing this blog!  It is so that I will have a place to whine and complain.  What I do hope and pray is that what I am experiencing and my reflections on it, the processing of the feelings will provide some bit of comfort to others who sometimes think they are going crazy, can’t go on any longer, are the only ones feeling that way, aren’t as good and nice as they should be, are failing to meet their own expectations.

What I hope is that other Caregivers who read this will understand that they have a harder job than anyone who hasn’ t done it realizes, that what they are doing has as much value as anything anyone has ever done no matter how important it might seem in the public forum, and that their lives have a depth of meaning they might never have found without the privilege of caring for another human being who needs them and whom they love deeply.

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 15, 2010

Trouble Processing Visual Images Continues

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , , , , |
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“My supper is gone!”  Since she had not been eating for a while, I asked her if she was done.  Almost all the leftover Quiche from lunch was still there.  The fruit had not been touched.  She said her food was gone.  I turned the plate, pointed to the Quiche sitting there and asked if she saw it.  She said she did.

We had ended up at McFarland’s Restaurant for lunch because of the awkward fit of the retired pastor in the life of the parish from which he retired.  We attended the funeral of one of the people I respected most over the years.  Ann was 93.  Just imagine what she had seen in those 93 years.  In our tradition we do not canonize saints.  If we did, Ann would be one!  She and husband Maury, who died about ten years ago, had helped found the congregation in the late nineteen forties.  I remember a few visits with both of them at their home after I first arrived in the parish in 1996.  Ann was doing with Maury what I am now doing with Mary Ann.  She was doing it with much more grace and humble acceptance than I have demonstrated.  While wishing to spend time talking with the family and close friends, I was not comfortable inviting myself and Mary Ann to the meal provided for them.  With a little more of that gut grieving going on, we headed to McFarland’s for lunch.  I keep wondering how much of this sort of grieving the Pastor I followed suffered in silence without my ever knowing it.  Thinking about that helps me put into perspective what is just part of this step in the journey.  It also surfaces some guilt that I was not more sensitive to his place in life at that time.

The most exciting event that wound some joy and anticipation into that same gut was the gift of the most effective anti-depressant of which I am aware, Lori’s home made chocolate chip cookies — a huge container of dozens of them.  Lori’s thoughtfulness will provide some pleasure for days to come — actually longer if I get some into the freezer before we devour them all.

At McFarland’s Mary Ann worked on the Quiche she had ordered for a full hour after the food arrived at the table.  I offered to help in one way or another at various times, trying not to make her feel as if I was rushing her.  She would not accept any help.  She struggled to get pieces on the fork that were secure enough not to fall off on the way to her mouth.  Toward the end of the meal she did allow me to cut a large piece of watermelon that accompanied the Quiche into smaller pieces.

After that hour, she had eaten about 30% (at the most) of the Quiche and one small piece of the melon, none of the rest of the fruit on the plate.  Of course people had come and gone all around us.  The folks who sometimes come, eat, and play bridge were starting to play at the table next to us.

I left the tip, got Mary Ann into the wheel chair, gathered the take home container and her purse together so that we could pay the bill and head to the car.  When I put the check and the twenty dollar bill on the  counter in front of Walt McFarland, the Owner, he just wished us a Happy New Year and did not pick up the twenty.  He said it was on him.  It is surprising how powerful kind gestures can be when a person is stressed and struggling.  He carried our containers out to the car and opened the doors for us on the way there.  Mary Ann just can’t negotiate styrofoam containers without crushing them or losing them off her lap (understandably) as the chair moves.  As a result, I have the challenge of holding the styrofoam containers (leftover meal and left over Coke in a takeout cup), pushing and steering the wheel chair, getting the doors open and holding them open so that we can get out.  Walt is a good guy!

Mary Ann started trying to get up this morning at 4am.  Between then and about 8:30am there were the usual snacks, little plastic containers of applesauce and tapioca pudding, some commode trips, some arguing about my need for her to stay in bed so that I could accumulate enough sleep between tasks to function during the day.  When we got up, she was determined to make sure we got ready in time to attend the funeral.  She was alert about many things at that point, except that there were things she could not do by herself.  After getting her usual yogurt and cereal to eat with her pills, I wanted her to sit securely in her chair while I showered and dressed. She could not sit.  She was too determined to get ready to go.  She said I could take my shower while she got dressed.  She hasn’t been able to get dressed by herself in a number of years.  I got her completely ready to go, and finally she was willing to stay seated long enough for me to get ready.  We had plenty of time.  We were ready almost an hour before we needed to leave.  By the time we left, she had sort of shut down mentally and physically.  We were able to get to the funeral, but not without much difficulty.

When we got home after the meal, she was not tracking well.  I asked her if she needed to use the bathroom; she said yes.  I was trying to tranfer her from the chair to the toilet stool, and as she was standing up, she began reaching forward and down. I asked her what she was doing.  With a very irritated tone that I could not see what was so obvious to her, she said she was washing her hands.  I don’t remember what I said, but I managed to get her seated and afterward get her to the bed for a long nap.  Just before she awoke, I had opened and shut the front door, leading her to decide that she had missed Zach and Erin coming by with there new baby.  She had been dreaming and, as she admitted at that point, she can’t tell the difference between dreams and reality.  Later this evening she told me that she had just seen me smoking a cigarette.  Other than a few days in college almost fifty years ago, I have never smoked cigarettes.

This has been and continues to be and interesting time in our journey.  There seems to be some transitioning going on for both Mary Ann and me.  I am not sure to where we are transitioning, but I guess we will figure that out as time goes by.

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 14, 2010

Eye Doctor’s Report

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , |
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It was the top line, one letter only, an E.  It was huge.  With her right eye, Mary Ann could not read it.  The Nurse had gone through all the sizes of letters available until finally she had the screen full from top to bottom with that one letter.   She could not read it. 

While Mary Ann seemed unfazed, I was taken aback by the impression that Mary Ann was essentially blind in one eye.  She had been to the Optometrist within the last year and a half.  She had gotten new glasses.  It was hard to imagine what could have caused such a dramatic change so quickly.  Neither she nor I had noticed her losing sight in that eye.  It just did not compute.

The Doctor came in to get more information and do a check of her eyes before the dilating procedure that would follow.  When the Doctor checked her right eye, she was able to read with difficulty letters on the screen that were large, but a size that allowed four somewhat smaller letters to show on the screen instead of only one huge letter.

After the glaucoma check and the dilating procedure had taken effect the doctor returned.  I asked her what might have caused the swelling that appeared yesterday and had disappeared by today.  She said it might have been a  chalazion, a blocked oil gland.  She observed that sometimes they will go away after a time and sometimes they have to be surgically removed. 

Then I asked her about the large quantity of thick, dark mucous that would sometimes gather on the edges of her right eyelid.  She mentioned the possibility that it might just be a flareup of blepharitis, an inflamation of the hair follicles of the eyelashes.   She prescribed a topical antibiotic if that should flair up again.  I will admit, having experienced blepharitis before, I am not convinced by that explanation, but we will use the antibiotic should it happen again to see if it helps.       

Neither the chalazion or the blepharitis are anything of major concern.  Then the Doctor checked the retina in each eye very thoroughly.   Her observations were good news in that Mary Ann’s retinas appear to be in very good condition.  The margins (?retina or eyelids) are in excellent shape, clear and clean.  She has cataracts, but ones that are a long way from needing surgery. 

The bad news is that the vision problems seem pretty clearly to be neurological.  The images from her eyes mechanically are being transmitted appropriately, all the parts working well.  The problem is in the processing of that information by her brain.  The Doctor did not say it, but it seems reasonable to conclude that there is no treatment for that problem. 

While I forgot to mention the stroke Mary Ann had about three years ago, it seems reasonable to consider that a factor in this problem.  The cluster stroke effected her right side.  The problem is with her right eye.  Ever since her stroke she has had problems using utensils to eat.  I mentioned in earlier posts the time she couldn’t see the meatloaf on her plate but could see the baked potato, the time she got up to get her Pepsi when it was right at the top of her plate inches from the food she had been eating. 

When I asked Mary Ann how she felt about the appointment, she asked if she needed new glasses.  I don’t know how much of what was said settled into her awareness.   We will make our routine appointment with the Optometrist since we are due anyway.  Mary Ann very often says she needs new glasses.  She seems to be convinced that any problems seeing are the fault of the glasses.  Since the iris of the eye is run by the neurotransimitter (Acetyl-choline) used by the Autonomic Nervous System (ANS), her compromised ANS (and the medications that treat it) has been affecting her vision for many years.  More of what the Parkinson’s and the Lewy Body Dementia have brought along with them when they joined us on our journey through life.  

As always, Mary Ann is just taking it all in stride.  It seems to be something of a blessing that some of the things she is dealing with have just not fully entered her awareness.  That may be by choice, or it may be a function of the Parkinson’s Disease and the Parkinson’s Disease Dementia.  It may all be sinking it, may simply be choosing not to talk about it.  It may be a defense mechanism to keep from dwelling on the problems.  It may be any combination of all of them.

Whatever is so, there seems to be nothing resulting from the appointment with the Eye Doctor that changes our current version of normal.  That is about the best we could have hoped for. 

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 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

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , |
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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 10, 2010

She Likes It!!!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
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Have aliens come and stolen my Mary Ann, replacing her with with a look alike imposter???  She ate the whole thing!  Mary Ann ate the chicken salad that I made from scratch with my own culinary-challenged hands. 

On three or four different occasions in the last few days, I put a couple of spoonfuls of that home-made chicken salad on her plate.  It is shredded chicken (from the freezer, prepared by our Daughter Lisa when she was here), grapes, pecans, celery, Miracle Whip, some fresh dill and a little onion powder mixed together.   She ate every bit of it every time I put it on her plate.  Potato chips and Pepsi rounded out the meal each time. 

If that is not enough, when I listed the options for supper tonight, she chose the beef, potatoes and carrots I had cooked in the crock pot the other day — and she ate it!!!  Now do you understand why I have posited the alien imposter theory?

On another matter, last night I asked three questions of the people in the online Caregiver Spouses of those with Lewy Body Dementia: 

The first question was about Mary Ann’s hair.  It seemed as if there was more hair than usual coming out on the brush when washing and combing her hair recently.  I asked if others’ Loved Ones had experienced hair loss.  Some Loved Ones have lost their hair, with no explanation from their doctors.  Group members mentioned the dry air at this time of the year, stress, too much washing, thyroid problems, and Discoid Lupus Erythematosus (DLE).  Since the problem seems to have subsided, I suspect it was just a natural occurance with no long term implications.  Needless to say, I will pursue it if there is more evidence warranting it.   Mary Ann’s hair is thick and dark with some gray mixed in.  She routinely gets compliments on how nice it looks. 

The second question had to do with disinfecting items in need of washing.  At the risk of being indelicate (I have been painfully explicit many times before), when there is need for cleaning matter (euphemism) off clothing before putting it in with other wash, I use Clorox in the water in a downstair sink we had put in for such things.  The last time I used the Clorox to disinfect some clothing, it was new red plaid pajama bottoms from LLBean.  I moved very quickly in the task of putting the pj bottoms in the water, swishing them around to get all the matter off, then rinsing and squeezing a number of times to get the Clorox water out of them.  Needless to say, they magically turned from red plaid to pink plaid pajama bottoms.  The suggestions from the group included OxiClean and Vinegar.  After some checking, it appears that OxiClean may and Vinegar certainly does disinfect pretty well.  I will probably substitute a 5% vinegar solution for the Clorox water when this need arises again. 

The third question had to do with disposable underwear.  The latest marketing tool is to replace unisex disposables with disposables specifically for men and for women.  The problem is that the women’s are made to be more comfortable for daytime use by enlarging the leg holes.  The net result is that  while they may be fine when up and walking, they leak badly if there happens to be a daytime nap.  Daytime naps are routine for many who need disposables.  I asked the group for suggestions of disposables that work for them.  I have had no responses to that one yet.  I suspect one reason is that the vast majority of those in the online group are women caring for their husbands.  The needs in this area are gender specific. 

One other note concerns a member of the congregation that I served before retiring.  He has had Parkinson’s longer than Mary Ann, over thirty years.  He fell and ended up in the hospital.  He has a strep infection that is interfereing with the healing of the arm on which the skin was broken when he fell.  In Emailing back and forth with his Daughter, I noted that people in her Dad’s and Mary Ann’s circumstances live in a narrow margin of functionality.  This fall and infection are taking Norm to the Rehab Unit of a local nursing home for a while.  He has been declining for the past few weeks.  Apparently, the treatment for the infection is helping him regain much of what he has lost in the last six months.   

In a sense, we are living on the edge.  In reality, all of us are living on the edge.  Anything can happen at any time.  Those who are in circumstances like Norm’s and Mary Ann’s are just more aware of it.  We can choose to live in terror of what might happen, or we can just choose to live. 

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

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

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength | Tags: , , , , , , , , , , , , , , , , , |
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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 6, 2010

Better Day

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , |
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The hallucinations seemed to have backed off a little today.  Mary Ann went to her Bible Study this morning after a break of about a month.  That seemed to help her alertness, both the anticipation and the class itself. 

I was surprised at how many ladies were at the class.  At 68 Mary Ann is among the youngest in the group.  The cold and snow did not deter them.  I made the observation that many who were there had spouses at home with whom they had been trapped for many days.  Apparently, they needed a break. 

I used the time Mary Ann was at Bible Study to head to the Wild Bird House to pick up a couple of things and talk with the owners.  There were a couple of other customers who joined in the conversation, especially about the Eagles I had seen Sunday morning.  One of the customers had been to the same area and seen forty of them.  The time at the Bird store often turns into a bit of a respite.

Mary Ann suggested again today that we eat at the library.  Since this was the second day in a row that she suggested it, I realized that it was more about the lunch than the library.  We had gone to the library yesterday.  She wanted the five cheese Quiche they serve there.  She wolfed it down with just a little help cutting some of it into smaller pieces. 

She napped for an hour or so when we returned home, but got up to join me in talking with a member of the congregation from which I retired who is one of the best interior design folks I know.  Stacey talked with us about window coverings for the sun room addition when that project is done in February.  Mary Ann is not so interested in the project as am I, but she will certainly enjoy it when it is done.  We also talked about a couple of lesser projects that might be thrown into them mix.  I am just grateful to have something concrete and positive to focus on during these days we are pretty well trapped in the house. 

This evening has been okay.  She seems pretty restless again.  I am especially tired this evening, so I will bring this to a close and try to 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.

 

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