February 17, 2010

A Sleep Day

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She went to bed at about 9:15pm last night.  She didn’t stir until about 8am, not even a commode trip.  I had gone to bed early and got a good night’s sleep also.  I got her up then to use the commode, talked about going to her Tuesday morning group while she sat on the side of the bed, still half asleep.  As I suspected, she needed to lie back down.  It is almost 12:30pm, and she is still sleeping.  A few minutes ago, I asked if she was ready to get up.  She did not respond.  I will check regularly now, so that she can get food, meds and a trip to the bathroom as soon as possible.

One of the folks in the online Lewy Body Caregiver Spouses group has made a movie and entered it in the the 2010 Neuro Film Festival on YouTube.  That video can be found by going to youtube.com and entering in the search box 2010 Neuro Film Festival.  Her video is on the second page, titled, Life with Lewy 2010.  There is another video on that page that is painfully funny to those who have been impacted by Parkinson’s. That title is, Parkinson’s Gets a Bad Rap.  I happened upon another video on YouTube titled Parkinson’s Disease — That’s a Laugh.  Check them out.

Mary Ann got up around 1:00pm, got dressed, took pills and with help ate her usual breakfast.  She moved into sitting with head in lap mode after eatng.  She was able to communicate a bit.  There was no evidence of her having hallucinations.

Since she was not done eating until mid-afternoon, it was not long to supper.  I had gotten out some beef fillets from the package we had gotten from Omaha steaks a while back.  Along with broccoli and a baked potato, she ate well at supper.  She even had what was left from last night’s B&R trip for dessert.

Volunteer Barb came to visit for the evening while I had a break.  As far as I know, the hallucinations stayed away during that time.  Mary Ann is in bed now.  How the night will go remains to be seen.

I headed over to Barnes and Noble to find a book that I could sit and read for a while, enjoying a hot chocolate in the Starbuck’s there.  After drinking PT’s coffee, purchased directly from the growers, roasted to perfection here in small batches, Starbuck’s coffee just doesn’t measure up.

I had no intention of buying a book, but I found one that I could not resist.  It is called The Mind of God: The Scientific Basis for a Rational World, by Paul Davies. I thoroughly enjoy reading books that probe the wonders of the laws of physics written by folks intelligent, intuitive and honest enough in looking at the best that science has to offer that they can see the “something more.”  This writer does not conclude the existence of God, but allows that what is implied by the universe and our place in it is something that some might call God.

Since I happen to be a person of faith, I don’t look to this or any other contemporary work to define my view of reality.  I suspect that if/when I finish the book there will be nothing with which I need to disagree to sustain my faith.  In fact, my usual experience in reading such books has been to simply see expanded the wonder and appreciation at what the best of scientific inquiry can bring to my faith.  For me such reading is devotional at least as much as it is intellectual.

I am glad that I got plenty of sleep last night.  Otherwise, I would not have been able to track with the author as I read the first chapter this evening.  It is encouraging evidence that my brain may not yet have atrophied completely!

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.

 

February 15, 2010

A Little Sabbath Time

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This will take a long time to write.  I am heading to the bedroom every five or ten minutes to help talk Mary Ann back into bed after getting up to respond to another dream/hallucination.  It is taking a long time, longer each trip into the bedroom,  to talk her down from whatever it is.

Mary Ann insisted on getting her pj’s on and going to bed at 4:45pm today.  She got up fairly early this morning.  Last night included a few more times up.  At least it wasn’t until after 6am that she starting trying to get up for the day.  Right away this morning she had that very intense lucidity that is laced with a little hyperactivity.  That particular version of lucidity lies just at the entrance to the place where the hallucinations run wild.

I managed to convince her to stay at the bed long enough for me to get myself showered and dressed.  Then we moved quickly through getting her dressed, hair washed, pills taken and breakfast eaten.  Things slowed a bit as she enjoyed a leftover orange/pecan sticky bun.  Almost the first thing Mary Ann remembered this morning was that there should be one left if I didn’t eat it.

Edie came to stay with Mary Ann while I headed up to the lake for some time away.  By the time Edie arrived, Mary Ann had finished eating and had her head down on the table.  At one point while in that position Mary Ann said something about the people stealing money.  I explained to Edie her recurring fear that “the people” are taking money from the loose change jar.  It is still out of sight next to my bed after the time she asked me to hide it so they couldn’t get it.

When I got back from the lake, Mary Ann was resting (in and out of sleep) on her bed.  Edie always brings and then cooks a lavish meal when she comes to stay with Mary Ann one Sunday morning a month.  The food was hot and ready to eat, but Mary Ann was not ready to get up and eat it.  I went ahead and ate.  Shortly after I was done, Mary Ann was ready to get up and eat.

After eating, she soon ended up in front of the television with her head down.  She was awake some of the time.  Later, I asked her if she wanted supper before or after the Evening Service at church.  She did not respond to that, but it was then that she decided to get ready and go to bed.

Last night was not wonderful for sleep.  Tonight has been filled with activity so far.  It is extremely likely that the hallunations today will be compounded tomorrow due to the lack of sleep.  That means that I also will be wanting for sleep.  Maybe this is the week I will end up with a paid person here so that I can get a good night’s sleep.

Given all the ups and down and twists and turns in the last weeds of this ride we are on I was grateful to have a couple of hours away from the house during the daytime hours. The need for Sabbath time is not exclusively for people of the Judeo-Christian tradition.  Whatever word is used for it, the fact that we have come into existence  with the need for sleep suggests that there is need for rest whether rooted in God’s creation of us with that need and calling it sabbath, or a need that emerged over aeons of evolutionary change (or both).

I think everyone needs some sort of intentional time for re-grouping, renewal time, time to think and process events, time alone, time to stop the stream of thoughts filling our head, and allow time to be quiet, time for intuitive connections to be made, the ones outside our power to force solutions to problems.  I certainly need such times.

Again today, the timing of Mary Ann’s needs frustrated plans to attend Corporate worship (worship with a community of people).  This morning at the lake I had some sabbath time, not corporate, but nonetheless sabbath time.

Of course the natural environment there speaks loudly to me of a connection with a Creator who has chosen to love me unconditionally.  The Eagles were fewer in number but still entertaining.  One caught and ate his lunch within binocular distance of me.  There were ducks and geese and gulls.  Blizzard conditions gathered power for a time as I sat in my warm van.

I read from Weavings, the Spritiuality Journal to which I subcribe.  I pulled out the Ingantian Retreat book that I ordered and spent time reading the next week’s suggested activities.  As usual, there were suggested Scripture references.  I read some of them and found them very meaningful.

I put on a CD of Medieval Music.  Anyone who studies music history discovers quickly that most early music is church music, or has its roots there.  The CD of Medieval Music is included words and themes that supported my sabbath tradition.

Since Mary Ann went to bed so early, I had time to put on the last Celtic Woman DVD from PBS.  Because of my experience a couple of weeks ago with a CD by one of the members of that franchise, I have realized how many of the songs sung by that group have lyrics and themes that emerge from my Spiritual tradition.  It makes sense, since the religious tradition of the Irish, at least after the early Celtic Paganism practiced by the Druids, is a just a different branch of the same tradition.

Putting the bits and pieces together provided some sabbath time today that has helped.  While corporate worship is an important part of any healthy sabbath experience, the bits and pieces helped keep my feet securely planted in the unconditional love that provides the support I need to deal with all that daily living 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.

 

February 7, 2010

High Flying Blood Pressure

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About 4am Mary Ann was up.  Then again once an hour until a little before 8am when we got up for the day.  There was some of the intensity that can develop into hallucinations and hyperactivity, but this time it did not get out of hand.

I suggested that after I wash her hair we should head to Perkin’s, where she always orders some pancakes and a couple of slices of bacon.  She liked the idea.  She did have juice and yogurt with her pills as usual, just not the bowl of cereal.  It took a while to get the morning chores done today, so it wasn’t until about noon that we actually headed to Perkin’s.  Then we headed to the grocery.  Even though I had a list, we ended up with more than intended.  Gratefully, it was all things that we routinely use.

During the morning, I began taking her blood pressure every hour or so.  Her blood pressure had been so high and the Cardiologist’s office on Thursday that it was pretty concerning.  Her morning meds included a whole Midodrine tablet with the purpose of keeping her BP up so that she doesn’t faint, on account of the Orthostatic Hypotension that has given her such difficulty.

I started at 8:17am, 220/115.  Then ranging from one hour to three and a half hours apart after that her blood pressure measured, 200/110; 160/85; 185/100; 200/100; 200/105.  I took it one other time when it the systolic was 200, but I didn’t get the diastolic.

I could not bring myself to give her even 1/2 of a Midodrine tablet for her midday and suppertime doses.  I know it is not good to stop meds cold turkey, but it just seemed crazy to give her meds that raise her BP when it was already dangerously high.  One thing that caught my ear was the Cardiologist’s ARNP mentioning the fear of a massive stroke.  I had mentioned that Mary Ann already had a stroke.  Angela responded immediately with that concern.  Mary Ann’s stroke was not a bleed, but a cluster stroke (bits of plaque, probably from the ulcerated lesion on her carotid artery).  Nonetheless, it is hard to accept blood pressure that high without major concern.

The last couple of days there has been some swelling of her feet.  She has not had that problem very often.  When she has had swelling it has gone down the next day.  Two days in a row catches my attention. She has not had the heaviness in her chest and the ARNP, Angela, did not hear any crackling in her lungs, the sign of problems with fluid build up.  I need to remember to weigh Mary Ann in the morning to see if she has gained any weight.  That is another of the signs of potential congestive heart failure.

Today, the hallucinations have emerged a bit.  When she started eating tonight’s two scoops of Baskin & Robbins, she asked Ashy if she wanted any.  She saw our youngest Granddaughter sitting in the transfer chair a couple of feet away from her. That Granddaughter is currently living in Kentucky, not in our dining room.

One of the choices we have to make for the remodel/addition of a Sun Room at the back of our town home will be vertical blinds to cover twelve feet of glass for the sake of privacy.  Stacey brought a sample book of blinds that seem ideal.  Mary Ann has gotten in her mind that there is another sort of blind that would be better.  The problem is, it does not exist.  She looked through the latest Martha Stewart magazine and has become convinced that she sees there what we should choose.  She said there are many examples throughout the magazine.  I paged through the entire magazine with her. There were a couple of pages that had what she decided she liked.  They were pictures of an open porch with no blinds, just greenery, vines and bushes in the yard the porch is overlooking.  Then on another page she pointed to some large pictures of pink and red nail polish she said were the weights at the bottom of the blinds.

I could do nothing but tell her that we could not find blinds that exist only in her mind but do not exist in a way that we could actually buy and install.  This one is going to be tough.  I have absolutely no doubt that as long as we live, she will  routinely mention that we did not get the blinds she wanted for those windows and sliding glass doors.

Mary Ann’s ability to feed herself simply was gone today.  At breakfast, I assisted her as she worked to get the pills into her mouth.  I fed her the yogurt and held the cup and straw to her mouth.  At the restaurant at lunch, after I buttered them, cut the pancakes into bite sized pieces and put syrup on them, she got the fork in her hand with my help and was determined to eat the meal herself.  After an interminable amount of time, in which I had long since eaten my entire meal, she was still frozen in place with her hand lying in the pancakes, holding her fork wwith her head down near the plate.  On occasion she tried to get the pancakes up to and into her mouth, but no pancakes ever remained on the fork long enough to make it in.

I offered to help a number of times.  A couple of times I moved her hand with the fork in it so that some pieces were stuck on the fork.  She still could not seem to get them to her mouth.  Finally, she agreed to let me put each fork full into her mouth.  I did the same with the bacon, and with the straw in her Coke.  She ate most of the food on the plate.

At supper at home the same thing happened, she could not get the food to her mouth.  What seems strange to me is that she refused to let me help her even though we were in a completely private setting.  She ate almost nothing.  When I returned with the ice cream from B&R, she could not manage that on her own either.  After a while she did let me help her eat the ice cream.  I can only guess that she really likes pancakes, bacon and ice cream, so she allowed my help.  She was not so fond of the ham and cheesy potatoes at supper, so she was not so motivated to accept the help.

After getting back from the grocery this afternoon, I worked on filling the pill containers for the week, while Mary Ann watched television.  Her head was hanging on her lap much of the time.  One of the times I came over to help her sit up, she said one of the things that always triggers feelings of guilt and some helplessness.  I don’t remember her words exactly, but message was: I am bored sitting here all the time doing nothing but watching television, and I am just wasting away.  The implication was: you aren’t providing me with enough activity and stimulation to provide a decent quality of life for me.

I have talked about this in earlier posts.  I do feel guilty about not providing her with more attention and engagement.  My rationalization is that my life already revolves around her wants and needs all day every day and all night every night.   There are two truths that sort of intertwine as I process what she said.  One is that I really should do more to engage her attention and improve the quality of her days.  The other is that she has Parkinson’s Disease and Parkinson’s Disease Dementia and there are resulting consequences and limitations that I cannot fix.  I cannot give her the life that has been taken from her by the disease.

One goal in processing this issue is to keep my feet to the fire to try to come up with things that will keep her interest.  My hope was that the lunch out and the trip to the grocery would help.  Tomorrow I hope to get both of us going early enough to make it to the 11am worship service followed by a meal out at a nice restaurant that we both like.  Then later in the day will come the Superbowl.  She loves professional football and will enjoy watching the game.

The other goal in processing this issue is to accept my own flaws and imperfections and let go of the guilt and frustration that I am not doing more.  This has actually been a better than average week in one regard in particular.  I don’t think I have said a cross word to Mary Ann this week, nor have I felt like doing so.  Sunday morning’s experience seems to have had some residual effect.  I have no illusions that the change in attitude will remain, but it has felt good to set Grumpy Caregiver aside for a few days.

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.

 

February 4, 2010

Too Good to be True

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Three nights are better than none.  Mary Ann was up once every two hours last night.  That is good measured by past standards, but disappointing in light of the hopes raised by three nights of sleep with only a couple of interruptions each night.  She was up and ready to go at 6:30am this morning.

There were a couple of Volunteers this morning.  Two of the three other members of the Wednesday morning group could not make it this morning, so Paul (the other of the three) and I met for coffee at PT’s (of course).  Then I spent some time sitting in the car listening to a remarkable vocal ensemble called Anuna (performed in Riverdance).  I checked out a particularly meaningful Bible Passage.  Then I walked a little over a mile at Cedarcrest.

When I returned, Mary Ann was napping.  After a while, she ate the leftover Seafood Tortellini from yesterday’s lunch.  While she was eating she said “where did you get that” while looking over my shoulder.  I asked her who she was talking with.  She said it was her Mother (who has been dead for many years) who was holding a doorknob in her hand.

There were some intestinal blowouts that suggested the onset of serious diarrhea, but they subsided after a while.  I will spare the details of those challenges.

As the day wore on, there were a two or three more quick comments that seemed to reflect the presence of a hallucinations.  She spent much of the afternoon with her head on the table.  I gave her the stuffed frog, on which she laid her head.

During that time a friend came over to talk with me about a project on helping people make meaningful plans for their own or a family member’s funeral.  Having done countless funerals over the years, I have seen what helps and what does not help when going through such a time.  It felt good to be able to talk about some of those experiences and discoveries that came from them.  It is a nice feeling still to have something to offer.

Mary Ann spent the rest of the afternoon with her head down in her lap, on the stuffed frog.  She manage to eat a little, very little for supper.  With the new Baskin and Robbins now open, I put the Lifeline button next to her head as she lay it on the table after supper, and headed off to get ice cream for her so that she would have enough in her stomach to last the night.  Yes, of course I wanted ice cream for myself — did you even need to ask?

I decided to write a request on Facebook that anyone who can do so, get ice cream at that B&R and tell them Pastor Pete sent them.  When I stop back in a few days, I will be curious to find out if anyone actually did so.  It can’t hurt to have the owners of the B&R as friends!

I have to say that it has been very disappointing to see an end come to the good days and nights so soon.  I was hoping we would get weeks or months rather than just days out of the new dosage of Seroquel.  I was not at the monitor for a bit a few moments ago and heard the telltale thump.  She was on the floor next to the bed but not hurt.  When I helped her to the commode, she suddenly got an alarmed look on her face and told me not to step on the baby.

Fifteen minutes later she was up again on the side of the bed.  I went in to see what she needed.  She said, “What are you doing here at school.”  When I asked what school we were at, she said it was Granddaughter Ashlyn’s school.  Then she suggested that she get dressed to help her get oriented.  I explained to her that it was 11:10pm, and everyone else is in bed, so it would not help her get oriented to get dressed.  She decided to use the commode, even though she used it fifteen minutes earlier.  She is lying down in bed again, but I don’t expect it to be for long.

She made it almost an hour.  This time she was on a ride in the car looking for a house, looking at a parsonage.  There were some banshee eyes (not scary to her) that seemed to be like the 3-D glasses from the yesterday’s viewing of Avatar.  Didn’t I have to pick up the kids.  The raccoon was there (first she called it a porcupine).  She said that this looked like her bedroom.  I showed her the quilt on the wall again to assure her that it actually was our bedroom.  At least so far tonight, she has not been as agitated as she was last week.  Unfortunately, it is likely that if she gets less sleep than she needs in the next few nights, that intensity will return.

More than one of us in the online group have compared the rapid twists and turns and reversals of fortune that come with this sort of dementia to torture.  Each of us has our sources of strength and wisdom.  In my world view, the Biblical literature is  the place to which I go to find the framework of reality as I understand it, to locate meaning in the middle of things beyond understanding.  This morning as I sat in the car at the lot at Cedarcrest, my mind went to a passage written by a fellow named Paul, who had by that time gone through some terrible struggles.  It reads this way:

“But we have this treasure in clay jars, so that it may be made clear that this extraordinary power belongs to God and does not come from us. 8We are afflicted in every way, but not crushed; perplexed, but not driven to despair; 9persecuted, but not forsaken; struck down, but not destroyed; 10always carrying in the body the death of Jesus, so that the life of Jesus may also be made visible in our bodies. 11For while we live, we are always being given up to death for Jesus’ sake, so that the life of Jesus may be made visible in our mortal flesh. 12So death is at work in us, but life in you.” [2 Corinthians 4:7-12 NRSV]

Quoting Scriptures is not intended to suggest that these posts are only for those who share my theology or any theology for that matter.  I am simply reflecting the sources to which I go for strength.  When hopes and expectations get crushed, it is easy to feel hopeless.  It helps to hear from others who have been there, like Paul, a way to perceive reality that allows survival. It is the reality to which Paul refers that provides the ground on which this roller coaster we are riding rests.

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.

 

February 2, 2010

Two Nights of Sleep!

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Again last night she slept from around 8pm to 9am this morning.  She was very sleepy, but she got up for pills and food before Bath Aide Zandra arrived.  Zandra chuckled that she seemed to sleep through the shower, hairwash and dressing time.

While Mary Ann was with Zandra, a friend from our Kansas City crew of friends of some 35 years called just to check in and provide some words of concern and support.  It helps to know there are people who are aware and concerned.  There are so many who are in difficult times, many worse than ours by far.  A word of support to someone you know can make a difference.

After her time with Zandra, Mary Ann sat in her chair, head down, dozing more until I got her to the table for lunch at about 1pm. She ate reasonably well at lunch.  When she eats on her own with no help, it takes her almost an hour to eat a meal.  Then she watched television for an hour before we took a trip out that we have been waiting at least a year and a half or two years to take.  The nearby Baskin & Robbins that closed then, has been remodeled and enlarged. It opened today!!!

Mary Ann had two scoops in a cup, Gold Medal Ribbon and Peanut Butter and Chocolate.  I ordered what I have been planning for weeks to have the first day it opened, a Hot Fudge Sundae made with Nutty Coconut ice Cream.   Yes it was as good as always.  Mary Ann allowed me to feed her the ice cream even though we were in public.  Ice Cream trumps pride.

I assured the owners that I would be one of their best marketing people.  I had met the owners when we were forced to drive to the other side of town to get our Baskin & Robbins fix when the one close to us closed.  They now own both franchises.  Owner Steve mentioned that the day or so before, he had been outside the new store when someone drove by, opened her window and yelled out that her old Pastor was excited about them opening.  That would be me!  Maybe, if I play my cards right, there will be a free dishes of ice cream for Mary Ann and me some time.  I am not counting on it.  They are likely to need every penny they can find to make this work.  I seem to remember hearing that ice cream places have generally fared well during the downturn in the economy.  I may be wrong about that, but it would not surprise me.

After we returned home, Mary Ann sat in her chair and moved back into dozing position.  She did grab a large stuffed frog that Becky and Chloe had brought for her Saturday night.  Our Daughter, Lisa, who supervised the building of a state of the art dementia building at a large CCRC (multi-layer of care facility for the older population) she helped administer, mentioned to them that sometimes it helped residents with dementia to hold a stuffed animal on their lap.  It helped keep them from trying to get up and it gave them something to hold on to.  Mary Ann hung on to the frog and it ended up serving as a place on which to rest her head.

Mary Ann ate supper by herself, another bowl of the meatball, sauerkraut, and veggie soup.  She went in to get changed for bed shortly after eating.  She has now had her meds and seems to be sleeping soundly.

The last two days have been easier caregiving days for me.  I still would like for her to be more active during the day so that we could get out and do some things.  I get out some when Volunteers are here, but that does not get her out and active.

I am still sort of reeling from last weeks craziness, and certainly do not want to risk repeating it.  At the same time, I want her to have the best quality of life possible at each point in her trip with this disease as a passenger. I will give this medication time for her body to adjust, then look at the possibility of reducing the dosage some to see if she can be more alert without triggering the hyperactivity and hallucinations.

My motives are at one level selfish.  I have a need to feel good about myself, to have purpose and fulfill that purpose successfully.  For those selfish needs to be met, I need to provide Mary Ann the best possible experience.  What is good for her fulfills my selfish need.  I also do love her very much, and it hurts my insides when she is not okay.  In addition I was raised in a family that holds honor and honesty in high regard.  Our last name can be traced back centuries, Norman originally, settling in Cornwall England. I have a great, great…Grandfather who was a hero of the Revolutionary War. We pass his sword from oldest son to oldest son. It is in my oldest brother’s closet.  Our ancestral Coat of Arms has written on it “Honor and Honesty.”  All that is to say, I keep my promises.  Mary Ann and I meant our marriage vows.

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.

 

February 1, 2010

I Will Not Surrender!

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , , |
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This morning I thought the increased dosage of Seroquel had gone too far and put her into a sort of drug-induced stupor.  She was sleeping so deeply.  She would not arouse.  She had hardly moved a muscle all night other than two commode trips.  Yes, I wanted to get some sleep, but not at that cost.  I would rather endure the rampant hallucinations than lose her completely into some distant world out of touch with reality, with who she is.

At that point I decided that unless things changed dramatically, I would call the doctor and do everything in my power to find a way to reset her medication regimen completely — take it all away (medicine vacation) and re-introduce only what is absolutely necessary monitoring side effects with each addition.  Some of the meds can produce hallucinations.  I would do it at home or in the hospital or wherever necessary.  I refuse to concede anything to this disease other than what absolutely must be accepted.

As I did morning preparations for the time that Sunday morning Volunteer Edie would arrive, I tried to awaken her a couple of times so that she could be dressed and have eaten and taken her pills.  Her hair needed washing after the last few difficult days.  She was just sleeping too soundly to get up.

I headed up to the lake after Edie settled in with instructions for giving meds.  I assumed that when I returned, Mary Ann would most likely still be in that same deep sleep.

As I drove the half hour to my spot by the dam, I put on a CD done by Lisa Kelly from the Celtic Woman group.  Her voice has a very engaging timbre.  Most of the songs were ones that I had heard and enjoyed before.  When I settled in by the lake, no eagles in sight at that time, the music and my image of Mary Ann in that deep sleep, began to burrow in.  For some reason, even though well-rested from last night’s virtually uninterrupted sleep, it all began to well up.  It surprised me at that moment to hear a song I would not have expected on a commercial CD for the general public.  The title is “The Deer’s Cry” from a movie called The Pilgrim.

I arise today
Through the strength of heaven:
Light of sun,
Radiance of moon,
Splendour of fire,
Speed of lightning,
Swiftness of wind,
Depth of sea,
Stability of earth,
Firmness of rock.

I arise to-day
Through God’s strength to pilot me:
God’s eyes to look before me,
God’s wisdom to guide me,
God’s way to lie before me,
God’s shield to protect me,
From all who shall wish me ill,
Afar and anear,
Alone and in a multitude.

Against every cruel merciless power that may oppose my body and soul
Christ with me, Christ before me, Christ behind me,
Christ in me, Christ beneath me, Christ above me,
Christ on my right, Christ on my left,
Christ when I lie down,
Christ when I sit down,
Christ when I arise,
Christ to shield me,
Christ in the heart of every one who thinks of me,
Christ in the mouth of every one who speaks of me.

I arise to-day

I am not embarrassed by this, but it has happened only four or five times since I was a child.  I have teared up, I have gotten choked up, but this morning I cried out loud. I just couldn’t stop. I was sitting in the car in the parking lot hoping no one would drive in and stop, as people often do since it is such a beautiful spot.

I don’t want to analyze all the whats and wherefores of what happened.  It was a deeply personal moment.  Writing it here risks trivailizing it.  I hesitated talk about it here, but it was too important to me for me to write about today honestly and not reveal it.  It just happened. I was overwhelmed with the vision of Mary Ann being lost in her own body.  She deserves more!

I refuse to be complicit in any way in treatments that make it easier to care for her at the cost of her being fully present to whatever degree possilble.  If I need to have paid help her overnight to be able to endure challenging behavior, so be it.  I wlll not lose her until the disease process itself takes her from me.

Yes, I am angry at this damn disease!  I don’t blame God.  The words of St. Patrick’s Breastplate in that song are what broke open the tears.  I sometimes forget how much I need what I sought to tell others all those years.  I am angry at myself for beginning too soon to accept losing her .

The recent decline and move into dementia has happened too fast.  Yes, sometimes declines happen so slowly that they are not noticed until they cross a certain threshold.  That can create the illusion that the change has happened quickly.  I remember a Neurologist in a Webinar saying that Parkinson’s progresses slowly.  If a change happens fast, it is not the Parkinson’s.  Something else must be the cause.  Lewy Body Dementia can change back and forth between getting better and getting worse quickly,  This decline and the increase in hallucinations has moved at a pace that suggests the need to look carefully, especially at the medications to see what other explanations there might be for the rapidity of the change.

I will accept only what must be accepted and will concede nothing more!  I am tired of just taking what comes and accepting as inevitable every decline.  While we choose to live in a certain denial day by day, I have no illusions about the general course of this disease. If anything, I know too much about what lies ahead, having read emails from other Caregivers struggling with this same disease in their families.

When I returned from the lake, I walked in the door to see Mary Ann sitting in her chair with Edie sitting next to her.  They were talking.  Mary Ann had gotten up shortly after I left.  She had taken her pills and eaten a good breakfast. She had drunk lots of liquids.  I had noted the color of Mary Ann’s urine in the commode this morning suggesting she might be getting dehydrated.  She had had a good BM (a big deal).  She had asked Edie about her new Grandchild.  She wanted to hear more about the baby.  She tracked the conversation, smiled and laughed at appropriate times.

After Edie left, we ate lunch — a sauerkraut and meatball soup that both Mary Ann and I love.  After much prodding, Mary Ann allowed me to help her eat. As a result she ate a good quantity of the soup and bread.  She had a big piece of carrot cake.  Not too much later she asked for and ate a bowl of ice cream.

She and I watched television for the rest of the afternoon.  She probably wondered what was going on since I did more hugging and telling her I love her than has happened in a while.  Neither of us is very demonstrative.  This morning messed up my controls for a while.

I got ready for the Evening Service, got things in the car, the garage door open.  I had been talking about going to church, as usual.  I put her shoes on.  She was tired and had been sitting there with her head hanging in her lap, napping.  When it was time to get in the car, she just was not willing to go out.

I gave her some supper.  Then she went right to bed.  She has now had her pills and is in bed, moving around a lot. I will be heading in soon.  Even though last night was a wonderfully sleep-filled night and today was a good day, tonight and tomorrow could be completely different.  We can take nothing for granted.  It will take some time to process all that happened today.  I am out of breath from the ride.

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 31, 2010

Craziness Continues

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , |
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Last night when I helped her to the commode, while sitting there, she told me she was in jail.  Another time when she sat up on the side of the bed I heard her say, “we are unarmed.”  Who knows what that was about.  This morning she was angry with me that I couldn’t understand that she had to pick up her Grandmother (of course gone for many decades).  Then when we went in to get her dressed, she said something about the fact that her Grandma died, and if it were my Grandma, we would be get there right away.

She is at the table in the heavy chair with the arms, subdued and dozing off and on, with her head lying on the table.  Yesterday I asked her often if she wanted to move. She always answered firmly that she was fine.  I am not bothering her so much today, but watching her moves using the A-V monitor screen by the computer at which I am sitting.

Last night was worse than the previous two nights, if that is possible.  Actually, the first part of the night, about 11pm to almost 3am, was within our more bearable norm of just being up a few times.  As I reported in my post last night, she was almost wild with the hallucinations and activity as if she was overdosed on speed before she finally agreed to get in bed.  It started again some time around 3am.  She started getting up on the side of the bed, talking and wanting to get up, dealing with the dream or hallucination of the moment.

In the 4am to 5am hour, the times up were as close together as three minutes.  She was very upset with me, as was I with her for that matter, that I insisted that she lie back down.  Finally shortly after 5am I just gave up and got her up to come out to the table and eat.  I knew it was too early to start the daytime pills.

It was not easy to get the food in her mouth, but she managed some yogurt and toast.  She was still hallucinating much of the time.  By about 7:15am, she was ready to lie down.  I went back to bed also since I have been pretty wasted with the short nights and challenging nights and days.  She slept about an hour. Then we got up, got her dressed and gave her the morning pills withmore yogurt.

With both of our kids, Lisa and Micah, emailing the same response at the same time that I had reached that conclusion, I have phoned Home Instead to see if someone could be found to stay with Mary Ann overnight some time very soon.  I will talk with them again on Monday.  At the moment, they have a number of folks out sick, so it will be some time before this can work out.  One option is their $150 for a twelve hour shift overnight.  That one won’t work for us, since that is only doable if the person staying with her is  up a maximum of four times to help her.  If that were the maximum times I was up with Mary Ann, I wouldn’t need the help.  That would be a great night in our world.  The next option is the hourly one. It runs $16-$18 an hour. It is certainly worth it to me for the sake of survival.  I will probably start with one night a week.

The problem, of course, is that the current situation is almost no longer doable.  It is hard to imagine being able to handle that all day long seven days and all night long six nights a week.

In checking with the online Lewy Body Dementia Spouses group, some others have had problems with Seroquel.  Some found it to be a problem at a larger dose, but workable at a lower dose.  One of them even used the description, “as if she was on speed.” that I had used before reading that post.

I have to decide whether to take the next step tonight by increasing the Seroquel from 125mg to 150mg.  This is not an easy choice.  The hallucinations had been increasing to an unbearable level before I increased the Seroquel from 100mg to 125mg.  I had been waiting anxiously for the batch to arrive in the mail, looking at the increase as the hope for returning the hallucinations to a manageable level. The first morning after I increased the dosage the first step, there was a hint of a little more lucidity.  That faded quickly and the frequency and intensity of the hallucinations ramped up even more.

Do I take the next step in hopes that the evidence is wrong, and it might begin to improve the situation rather than make it worse?  Do I respond to the evidence that it seems to be making the hallucinations worse and pull back?  At the moment, I do not know which I will do.  I don’t know how much risk there might be of another increase making the problem worse and moving us farther down the road permanently.  With LBD it is common for strong meds to cause a loss that cannot be regained.  That level of vulnerability is one of the ways LBD differs from Alzheimer’s Dementia.

Whatever I decide, assuming this does not improve, next week I will phone the Neurologist’s office at KU Med Center’s Parkinson’s Clinic and ask for a full review of her meds, to see what changes might have some hope of mitigating this pretty much untenable situation.

I suppose I will also make some phone calls, possibly visit, one or two places that could serve as options if this ceases to be doable at home.  In talking with my daughter, Lisa, the idea of hiring someone either to live-in and help out with Mary Ann a few hours in trade or someone to stay a couple of nights a week re-emerged.  We did have someone we hired for a few hours a week some years ago. I still have an active federal ID number and state withholding tax number just in case we go that route again. We have a finished basement with egress windows in the bedroom and living area, and there is also a large full bath (shower only). That space was finished to allow the option of live-in help if we needed it.

I guess we have been in the frog-in-the-kettle mode.  Things have been moving past being manageable at such a slow pace that I didn’t really realize how hot the water was getting.  I guess it is time to find a way to reduce the heat before our frog is cooked (or goose – take your choice).

Mary Ann stayed at the table, I got lunch for her, and she ate very little.  At about 2pm, after a trip to the bathroom, she stopped at the bed and indicated that she wanted to lie down.  She has been down for about an hour now.  It is such a relief that she is sleeping for her sake and for mine.  While sleeping during the day is not always a good idea, any time that she is resting and secure is a wonderful respite for me.

Our Son Micah phoned and will be coming over with our Daughter-in-Law Becky and Granddaughter Chloe this evening.  It is over an hour one way, and Chloe had indoor soccer and basketball games today, so we really appreciate them coming after a long day.  They arrived in time for us to order pizza.  Mary Ann was not ready to get up from the nap she started after lunch.  She did get up when supper came. 

She was moderately responsive, compared to having been almost completely unresponsive most of the rest of the day (other than the morning hallucinations).  She did eat a little of the pizza (cheese sticks).  She went to bed again while they were still here. 

It was very helpful to me to be able to sit and talk with them and hear how they are doing.  It was good for Mary Ann also just to have them around.  It was a low key evening, but just spending the time together seemed to lift for the moment the pall that has been settling over us last few days in particular. 

It is done.  I gave Mary Ann the fully increased dosage of Seroquel tonight.  One option that is unfortunately the more likely one is that by three or four in the morning at the latest. she will be bouncing off imaginary walls.  If and when that happens, I will be running after her as she does.   The less likely but preferred option is that she will finally sleep well and have fewer and less intense hallucinations tomorrow. 

And so the ride goes on! 

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 25, 2010

Acrobatic Eagles Entertain

Posted by PeterT under Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , |
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I am not sure how many there were sitting on the ice at the lake, but certainly fifteen or more.  It is a huge lake, so I could barely see some of them.  There were adults and juveniles in many stages of development.  They sat on the lake waiting for frozen fish to work their way close enough to the surface of the ice that they could get to them.

Many of them flew from one place to another.  At one point a beautiful black and white adult American Eagle flew right overhead, low enough so that I could practically count the feathers without using the binoculars.  Later a juvenile did the same thing.  The mottled brown and cream were bright and beautiful in the sunshine.

The Eagles interacted with one another.  They would land near each other.  At one point there were a cluster of four, two adults and two juveniles hopping toward each other, then flying a few feet away.  A while later there were two standing on the ice so close to one another that they were touching.  One was a juvenile and one an adult.  It looked like a parent and child (same size as parent) leaning on one another, both looking straight ahead in the same direction.  I suppose it could have been a May-December thing.  I don’t know enough about eagles’ behavior to be able to make an intelligent guess.

The most spectacular sight was of two eagles flying into each other, almost grasping talons in mid-air.  At one point one of them did a complete sideways somersault, a roll. “Contrary to traditional belief, eagles don’t copulate in the air but rather on a branch near their nest or on the ground.”  That is a quotation from a website named Birdhouses101.

It took a while for me to settle after the excitement of what I was seeing.  Once settled, I spent some time reading an article from Weavings, the Spirituality Journal that I read.  It was the second reading of the same article.  Many of the articles in the journal are a little like fruit juice concentrate.  They need some time thinking, some contemplation, to get the best and most satisfying flavor from them.

The third week in the online Ignatian Retreat I have been doing has provided Scripture passages and articles on a theme that has been reinforced by the online Prayers and exercises provided by Fr. Ed Hayes (through the National Catholic Reporter website).  The theme is appreciating God’s imprint on and activity in all dimensions of life, especially the natural environment, a little like the movie Avatar, but without crossing into Pantheism.  I haven’t yet seen the movie, but would like to see it on the big screen rather than waiting for the DVD to come out.

The time at the lake provided the perfect setting for contemplation of God’s presence.  It is a theme that provides respite and strength for the day to day demands.

Mary Ann had a reasonably good day.  Elaine spent time this morning with her while I headed to the lake.  Elaine always reads more pages in the book they have been working on for months.  When Elaine reads, she immerses herself completely in the story and the characters come to life.

Lunch was a grilled sandwich, none too exciting, but then the football playoffs were on television today. Mary Ann enjoys watching professional football.  When we went to our first Chief’s game in Kansas City, she wondered what the ten yard business was about.  Not too many years later she reached the point that she knew the names of most of the quarterbacks on the various teams.  She would yell out loud when the games were on.  She has become much more subdued, but sitll enjoys watching the games.

There have been some mild hallucinations today.  She only had a short nap on the couch today.  I prefer that she nap in her bed, since it is outfitted to deal with disposables leaking.  I put a chux on the couch for her to lie on just in case.

She is in bed now, but I don’t know how the night will go — whether or not it will be filled with raccoons and people and any other unwanted guests remains to be seen. Actually, I went in to see what her movements were about.  There were children again.  Then she looked over my shoulder as I was helping her to the commode and said, “What am I going to do with all those sponges?”  That is a new one.  I checked again and she was checking the children who she said had found their spots.  She asked for some tapioca.  As i was feeding the last of it to her, she jumped because the raccoon was nibbling her foot.  Then the bedding was moving.  I saw no movement.  I am anxious for the new order of Seroquel to come so that I can titrate from 100mg to 150mg per day.  Then we will see if there is any reduction in the hallucinations.

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 22, 2010

Local Resources and Support Systems Help

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , |
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“What day of the week is it?  What month is it?  What year is it?  Remember these three words, pen, car and watch.  Do you ever feel hopeless?  If so, is it all of the time, most of the time, some of the time, a little of the time?”  Tim asked those and very many other questions.  He asked Mary Ann if I was being nice to her.  I made a point of leaving the room for some of the questions, so that my presence would not skew her answers.  He got a current list of medications.  He checked for any changes in the information from last year.  Tim is a Case Manager from our local Area Agency on Aging. By the way, Mary Ann did not do quite as well as usual.  She aced the day of the week and the month, but could not come up with the year.  In the past she has usually remembered at least two of the three words.  He always asked three or four times during the interview what the three words were.  This year she was not able to manage remembering the words at all.  On the positive side, the number of falls has been reduced dramatically.

If I understand correctly, there is such a place accessible to most everyone.  Our Area Agency covers three counties.  Tim comes a couple of times a year.  Once is the major information gathering time.  The book the Agency puts put out each year has hundreds of resources listed on its many pages.

It is through Tim and JAAA that we connected with the local County Health Department.  In fact, coincidentally, Public Health Nurse Linda from the County Health Agency will be coming tomorrow for her assessment.  She comes every couple of months.  It is through her that we have had Bathe Aide Zandra for the last few years every Monday and Wednesday mornings.  We pay for that service (around twenty dollars a visit).  Those who do not meet certain income guidelines have reduced fees for the service.

Nurse Linda brought us our flu shots this fall.  She visits to see if the Bath Aide situation is working well.  She checks to see if we have any other needs, although there are many limits on what she has time or money to do for any given situation.  She and Tim are always interested in Mary Ann’s falls, any physical problems that might have to do with her safety and the quality of her care.

Even though we are pretty well self-sufficient, it feels good to know that there are folks out there paying attention to our needs, whom we can call if major problems emerge.  We can get help finding and evaluating resources.

By virtue of being active in a church, we have additional resources available to us.  Our congregation has a Parish Nurse.  Margaret is available a couple of hours a week at church to check blood pressures.  She comes to visit regularly to bring flowers and food and help out in any way she can.

In our case, the cadre of Volunteers from church is a major support.  As I often mention in these posts, they come and spend time with Mary Ann, enriching her days, giving her social contact and a break from my constant hovering. The visits also give me a chance to run errands, or meet with friends over lunch/coffee or head out for a breath of fresh air, or have some time for reading and meditation. Sometimes, as happened earlier this week, they bring food.

One of the major support systems for me is the online group of Caregiver Spouses of those with some form of Lewy Body Dementia [LBD].  That group has so much in common that we can be completely open in sharing our frustrations and fears in language that would scare those who have not been through what we are going through.  We can share ideas that actually have been tested in the lab of daily living with LBD or PDD [Parkinson’s Disease Dementia].  It is surprising how much it helps just to discover that what your Loved One is experiencing matches what many others are experiencing.  We are able to talk in a matter of fact way about things that would be terrifying otherwise.

In the course of writing these posts I have often mentioned Mary Ann’s Tuesday morning group.  That is part of her support system.  The Spiritual Formation Group that meets at our house on Wednesday mornings is a part of my support system.  Those groups, corporate worship experiences and personal devotional experiences combine to nurture our Spiritual health.  Sustaining friendships to the degree possible also helps us maintain a level of equilibrium in our out of control corner of the world. The local Parkinson’s Support Group provides the chance to have some face to face time with others dealing with the same challenges.

Whether or not you are aware of it, those of you who read this blog are important to my ability to continue in the role of Caregiver without losing my bearings.  During each day, I think about what is going on in our lives with an eye toward what I will say in the post I will be writing next.  As I write about it, what has gone on in that day or two begins to come into focus, allowing me to gain some sort of perspective on it.  That perspective steals from it the power to disable and destroy.  The struggles are difficult enough to deal with, without my giving them more power than they already have.

While just writing about the day and processing the events is helpful by itself, it is the awareness that there are people reading those words that brings with it some external validation.  I have only numbers on a metrics page and a few comments to verify that there are people out there listening, but it makes a difference knowing that you are there.

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 18, 2010

Do We Need a Plan B?

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , |
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Yes!!  Caregivers need a Plan B.  Today was not a good day, but it certainly did not demand a Plan B.  I spent the day with espophageal spasms of varying intensity.  It was not the worst I have had, but the discomfort made it tougher to deal with the duties that come with the caregiving role.  The needs do not change when I am not feeling well.  Every parent who has been sick has experienced the challenge of dealing with the children (and sometimes spouse) who continue to need care.

Actually, the seed for this issue was planted by some of the members of the online Spouse Caregivers of those with Lewy Body Dementia group.  There was a thread of posts talking about times either they or someone they knew ended up unable to care for his/her Loved One for a time.

The thought has crossed my mind lots of times that if I were to have a stroke or heart attack or whatever, Mary Ann might not be able to manage to call for help.  She hasn’t used the phone for at least a couple of years.  It is not at all a certainty that she could manage the dexterity and negotiate the spatial issues, the same ones that make it hard to get food to her mouth, to get the three numbers punched in order.

Then, if the EMT’s did come and I were not conscious or coherent, what would happen next?  What would she know to do to get care for herself?  She doesn’t know people’s phone numbers.  She can’t be alone for very long since she needs help with most of her personal needs.

There is a booklet we have made that contains lots of contact information and medical information that a Volunteer staying with Mary Ann can use if the EMT’s need to be called.  That book is easily accessible, but it would be hard to find for an EMT who would have no idea where it is or even that there is such a book.

If I am conscious, I have done enough checking to have options available should I have to go to the hospital.  Mary, a good Friend who schedules the Volunteers for Mary Ann, has checked with a few folks who, if they are available, would be willing to come to the house on short notice.  I have called the Agency we have used over the years for times when Volunteers were not available.  They have assured me that one way or another, they would have someone at the house within an hour or so. Our Son and Daughter-in-Law live about an hour and a quarter away.  Once they were involved decisions could be made and any major issues dealt with.

All of that is contingent on the first contact being made. As is so for people who live alone, there is the fear that it will be days before anyone discovers there is something wrong.

After thinking about this for a bit, I asked Mary Ann what she would do if I had a heart attack or whatever.  She did not really have a response. I asked her if she remembered where the Lifeline button that she wears if I am away from the house (seldom any more) for a short time is located.  She knew that it was always on her dresser next to the lamp in the bedroom when she is not wearing it.  I suggested that she go and push that button if something happens to me.  I also suggested that we practice that on occasion.  The monitoring folks ask us to test it regularly anyway.  When the button is pushed, a loud voice comes on a speaker phone unit asking if everything is all right.  It picks up sound well enough that Mary Ann’s voice can be heard.

I am going to find a place to put the contact information that will be very accessible and easy to find for EMT’s when they come, then put a very visible note somewhere that would be seen by EMT’s coming in the front door.

A Plan B is often the plan you think of when it is too late to be of any value.  I hope the online conversation and today’s minor health issue will get me moving to actually do what I am suggesting.

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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