May 28, 2010

Mixed Blessing

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , |
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She was awake for almost half of the day!  I enjoyed having her present with me again.  Her presence included a question about when we would hear the verdict.  One of her dreams, the one to which she woke crying because she had been beaten by a police officer, included a follow up in which we were to go to court.  She was referring to that dream, still confused with reality.  It is what I suspect is part of a series of living dreams that have collected bits and pieces from Law and Order episodes and thrown them into a new configuration.

She was lucid enough to at least hear my suggestion that she is free to take that off her list of worries since it never actually happened and was only a dream.  So far, the hyper hallucinating has not returned.  It certainly seems to be on the horizon.  I thought the hallucinations might fire up last night, but they didn’t.  Since she was awake more of today and spoke of the dreams as if they were still a reality, it seems more likely that the return is near.

The last four days have provided a chance for Mary Ann and I to reconnect a bit.  It is very hard to connect with one another when she is constantly in a world of delusions and hallucinations.  The last few days we have been able to express a gentle warmth with one another, a lingering hug when moving her from one chair to another, a soft kiss while in front of the fridge getting ready to pick out something for lunch. I will miss that when the hallucnations return.  I have a quiet hope that by reducing the Seroquel, the intensity and frequency of the hallucinations might diminish a bit, allowing a little space in between to reconnect.  I hesitate to hope since so often that for which I hope gets lost in the next crisis.

We did get out in the car today.  Mary Ann ate well at breakfast, stayed up for a couple more hours until Hospice Aide Sonya came to give her a shower and do her hair.  Mary Ann was hungry for lunch as soon as that was done. She ate a good lunch with a half sandwich, chips, Pepsi, and Concrete from Sheridan’s that had ended up in the freezer one evening a couple of days ago.  After lunch, I got her into the car and we headed out for some errands.  She stayed in the car, while I ran in and out of three or four places.  It was not long before she was dozing in the car, but at least we were out.

She slept for a couple of hours when we got back, then she got up and ate a small supper.  This seems to me to be the first day in many in which she has eaten three meals, even if the last one was small.

She is back in bed, having taken her pills.  She slept reasonably well last night.  My expectation of a difficult night has increased tonight based on the increase in her activity today and the questions about the dream she has mixed with reality. She also seems restless at the moment.

The good news is that if it is a bad night, Monday evening’s Volunteer Tamara offered to come for a time in the mid-morning tomorrow and the afternoon next Tuesday to provide some nap time options for me if needed.  I was very obviously suffering from lack of sleep last Monday after the 8 day run of intense hallucinations at night as well as parts of the days.

I made a belated phone call to my Brother and Sister-in-Law who had a combined surprise birthday party in conjuction with the Confirmation of one of their Grandsons.  One turned 80 and the other 81. Happily, they are both in good health and as feisty as ever, and they certainly are a feisty pair.  They have a genuine woodland and pond in their back yard measured in acres rather than feet.  Their garden is huge.  The bee hives provide them with honey. When it is cold, wood cut from their and their Son’s property warms them in the wood burning stove.  Two of their Children and three Grandchildren live moments away.

I was disappointed not to be able to travel the ten hours to the surprise party.  My four Brothers and Sisters were together at the party.  Three had come a five hour drive to attend.  As a Pastor, we have lived at various places, none close to our families of origin.  All five of us have discovered more interest in getting together in recent years, but Mary Ann’s and my circumstances have not allowed us to join them very often.  We have a great time when we are together.

For now, it is my intention to try to get to bed earlier tonight in anticipation of what might come during the night.  I suspect the respite is coming to an end.

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.

 

May 27, 2010

I Keep Waiting for Their Return

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There is no reason to think the hallucinations won’t be back.  She is still sleeping all night and most of the day.  I expected them to fire up last night.  They didn’t.  I expect them to fire up tonight.  I am assuming that Mary Ann is just adjusting to the lower dose of Seroquel, that she will sleep off the transition and return to the cycle of sleep days followed by hallucination days.

She got up pretty early, was up for about an hour and a half this morning, and went back to bed.  While she was up, she took pills and ate a good breakfast.  She was calm and lucid.  She says very little when she is up.

She was up again early this afternoon. I got her dressed. She ate a good amount of food for lunch.  Again, she was calm and lucid.  She lay down after an hour or so.  As has been so every day since last Saturday there was some intestinal activity, sometimes almost as difficult to handle as Saturday’s problem. Other than that, the care issues have been minimal.

At this moment it is a little before 7pm and she is still sleeping.  I am concerned about how much she is sleeping, but comforted that she is eating reasonably well at least at breakfast and lunch.  There is less production by her kidneys, but since she is sleeping so much, she is not taking in enough to produce much.  The color is okay.  I will certainly keep an eye on that.  If I get concerned, I will call Hospice to talk with the nurse.

Because she is lying down so much, when she does get up, she is vulnerable to fainting, but even that is not as bad as it has been at times.  I have done nothing much today, just waiting and watching.  I have the monitor on so that whenever I am back here at the computer I can see if she is stirring.  Otherwise I just go in and out and check to see that she is okay and ask if she wants to get up.

The only progress today is that I got a phone call in response to the fax that I sent.  The Nurse was clear that the Neurologist would still be available to deal with the Parkinson’s but not the Parkinson’s Dementia or any medicines used to treat the hallucinations (the primary symptom of Parkinson’s Disease Dementia).  I said nothing in response other than asking for clarification that he would still see us at our next scheduled appointment.  I asked if he would renew the Seroquel Prescription that he started prescribing about a decade ago.  She said that whatever Psychiatrist we  find should do that.  I have to say that everyone in the online Lewy Body Dementia Spouses group, as far as I can tell, uses a Neurologist and not a Psychiatrist to deal with their Loved Ones’ [LO] treatment and medications.  These are a few hundred folks who have been dealing with this disease, some for very many years.  Very many LO’s have hallucinations and delusions and sleep issues identical to Mary Ann’s.  Among them, the use of various medications including Seroquel works for some and not others.  There is no consistent pattern of treatments.

…She got up again at about 7:30pm to go to the bathroom and change into her pajamas.  Then she returned to bed.  I will wake her at 8:30pm or 9pm to give her the bedtime pills and see if she is hungry.

…I got her up to take pills at about 9:15pm.  She wanted to eat something and chose a single serving container of applesauce.  She lay back down as soon as she was done with the pills and the applesauce.

I did take a little time to sit on the deck this evening, reading some more of the book of meditations (titled Christ, My Companion) on the Prayer of St. Patrick (St. Patrick’s Breastplate).  The writer, Marilyn Chandler McEntyre, is an intelligent and spiritual writer who reflects good Biblical scholarship and an appreciation for the intricacies of the Physical Sciences.  That is a combination I especially appreciate.  It always helps tune my mental and spiritual receptors when I read in a woodland setting even if human-made, located in our backyard.  The trees, flowers, sounds of the waterfall, birds, and tonight, fireflies, all helped create access to my spirit.

I took a moment to go to the front of the house with my binoculars to bathe in the light of a bright perfectly round full moon, just rising from the horizon between two trees.  It is surprising just how much of the landscape on the moon becomes visible with good binoculars.  With such a bright full moon, I didn’t expect to see so many stars and planets, even a couple very close to the moon, still visible.

Mary Ann seems to be sleeping, but she is doing the jerking that I  have seen  more often lately.  I may just be seeing it more since she is sleeping more at the moment. I don’t know if what she is doing qualifies as Myoclonic Jerks, but even if they are, to my knowledge, it would make no difference in treatment.

I continue to wait for the hallucinations to begin again. I am getting spoiled by having time to rest.  I would be happy for them to take a long vacation and leave Mary Ann alone for a while.

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

 

May 26, 2010

Intense Hallucinations Take a Break

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Today was a respite from the hyperactive hallucinating with me tagging along hanging on to the gait belt.  For most of the last two days, Mary Ann has been sleeping or resting but certainly calm even when awake.  Her speech has improved even though she is saying very little.

Yesterday, she was almost completely unresponsive.  This morning she refused her shower.  Monday and this morning she seemed not to know her Bath Aide Zandra of whom she has come to be very fond. When I came in after the morning Spiritual Formation Group on the deck, she was sitting at the table with Volunteer Maureen trying to feed her some yogurt.  Mary Ann was crying.  I guess she had been since Zandra got her up.  I assumed she had had one of those sad dreams that sometimes come.  When I asked her about it, she said she couldn’t remember why she was crying.  She might have forgotten or she might not have wanted to tell me about it.  I think it was the former.

As the day has worn on, the short times she has been up have gone pretty well. She has seemed calm and lucid and connected.  I haven’t seen her that way in over a week.  It seems reasonable to conclude that the addition of a morning dose of Seroquel ten days ago made things worse rather than better.  I expect the hallucinations to begin firing up again, probably tonight, but I hope they will not be as intense as they were before we removed the morning dose of Seroquel. Whatever comes next in our relationship to a physician, I will be asking lots of questions about the Seroquel she is still taking, the night time dose.

The last two days have provided me with a little more rest.  Even if still tired, I feel better and seem to have regained the ability to experience moments of respite.  Last evening while Volunteer Patrice was at the house with Mary Ann, I went to my favorite local spot to enjoy that wonderful view and a spectacular sunset.  The sun was a huge ball with the light refracted enough so that it was possible to look at it as it passed behind a horizontal band of cloud, showing above and below the cloud before reaching the horizon.  As I was looking toward the sun the sky and clouds were glowing as if on fire.

Then I saw something I have seen in movies on rare occasions, but never in person.  I took the binoculars and pointed them in the direction of the sun, providing a view as if through a movie camera lense.  The air was filled with Cottonwood seeds, carried in those tufts of white fluff.  The sunlight caught them in a way that made them look just like the embers that fly up from a bonfire when the burning wood is stirred.  The air was full of those firey embers being blown gently across the scene provided by the binoculars.  It was sort of entrancing as I watched them floating through the air.

The weather allowed this morning’s Spiritual Formation Group to meet on the deck.  It was a beautiful morning in spite of predictions of storms.  The birds were loud and busy. The sky and clouds were in stark contrast of deep blue and bright white.  There was a breeze that cooled us periodically as we were warmed by the bright sun.  The conversation was thought provoking and satisfying as we caught sight of the power of community and the need to have reverence for others and the setting in which we live together.  As always, I am struck by the commonality that we have since we are all made of the same stuff, earth.  The first person in the Biblical account of creation is named Adam.  That name is the Hebrew word for earth, dirt, adamah. We call ourselves human, from the word humus, the dirt from which plants grow — fertile soil.  Whether one happens to have a spiritual view of reality or one without a spiritual dimension, the same is true.  We are made of the stuff of earth – all of us.  No one can claim to be better or more valuable than another and still speak the truth.  We may do things that when measured by others have greater or lesser value, but we are at the core, the same.  That seems to me to be the key in this hostile world to any path that might lead to real peace — no winners and losers, but full participants in our common humanity.   Such peace is only a dream in a broken world of imperfect people, but possibilities start with dreams.

Later this morning, I experienced a mini-retreat with fellow group member, former parishioner and friend Paul as we walked some property that reminded me a bit of my favorite place of Spiritual Formation, St. Francis of the Woods in Northern Oklahoma.  A friend of Paul graciously gave him permission to bring me out to this remarkable spot that provided an expansive and secluded field of wild flowers and native grasses completely surrounded by trees.  For me it was a bit of a step back in time to my childhood days of wonder over weeds and bugs and birds.

The deck and the area surrounding his friend’s house were filled with birdsongs.  There were wrens singing so loudly that it almost hurt my ears.  Other birds joined in.  Flowers in various stages of the growth cycle were to be found in bed after bed.  The trees were even dramatic in shape and texture as they reached into to one another, displaying varying shades of green. One large tree next to the deck had multiple gnarled trunks providing lots of play areas for the birds to entertain as they hopped from branch to branch.  There were art pieces, small and large, metal sculptures, everywhere I looked near the house.

Afterward, I was out of breath and hot and sweaty with boots wet from walking through the weeds but refreshed by the experience.  I am grateful to have felt good enough last evening and today to enjoy those experiences.

As I said, I am expecting the hallucinations to begin firing up today and tomorrow, based on past experience.  I am hoping that some of the contacts and calls will begin to bear fruit as we look for good medical care for Mary Ann for the rest of this journey.

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.

 

May 25, 2010

Down, But Not Out

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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I felt pretty low this morning. She was up some during the night, but not as bad as some nights.   Mary Ann’s dementia was pretty strong.  Her words were still pretty much unintelligible. She insisted on getting up very early.  I was not sure if she would ever calm down.  She was hallucinating and grumpy.  I felt pretty much trapped, barely able to manage a shower and responding to my own call of nature with Mary Ann up and moving. I felt unusually tired, not just physically.

She finally did become more subdued, putting her head on the table as she sat.  She ended up in bed and was only up for a small breakfast and a very small lunch.  At lunch I had to hold her head up to get any food in her mouth.  Later in the day, she was up for a short time when Volunteer Coordinator Mary phoned and brought us Baskin & Robbins ice cream.  Mary Ann ate only a very few spoons of ice cream with me standing up beside her holding her head and upper body up, feeding her while Mary held the cup.  She then pretty much fainted and I took her back to bed.

She has had no supper either.  Once in the afternoon she did get up for a very short time.  She stood up to go in the kitchen to get something to eat and when she got near the bedroom door, she changed her mind and went back to bed.  She has at various times been doing a lot of vocalizing and jerking when lying in bed ostensibly asleep.

I have no clear expectation concerning how she will react to removing the additional dose of Seroquel she had been taking for eight days. This is the second day with only the evening dose. I am pretty apprehensive about the impact of the change.

It is easy to feel very helpless in the face of things over which we have no control.  Losing the care of the doctor on whom we have depended for so long, who has performed veritable miracles with medications over the years, was just another evidence of our vulnerability.

What has happened throughout the day today has provided a glimmer of possibility — only a glimmer, but at least something.  Talking with the folks at hospice, phoning a couple Psychologists in the city whom I know and respect, began to produce some results.  Both Psychologists called back with helpful information, the Hospice Nurse made her weekly visit and had done some checking, the Hospice Social Worker phoned and came over with some helpful information. Then Volunteer Coordinator Mary brought us the ice cream treats.  I am still bone tired.  I don’t know what that means exactly, but it sounds as I feel.

As tired as I feel, there is also the feeling that we are beginning to regain a little control in a situation that is hopelessly out of control.  It may only be an illusion, but if it is, it is a helpful illusion.

At the suggestion of one of the Psychologists, I have contacted a Senior Diagnostics program at a local hospital.  Apparently the Psychiatrist in charge is especially capable of dealing with complex clusters of symptoms and diseases — that certainly is Mary Ann.  The person with whom I spoke on the phone knew about Lewy Body Dementia and seemed to understand that it had to be treated differently from Alzheimer’s Dementia. While a few days in the hospital would be among the last things either of us would choose, at least it is an option.

The other Psychologist gave me the name and number of a Neuro-Psychologist whom he knows well and respects very much.  While a Psychologist is not the one who prescribes the medications, he/she always has a close relationship with a Psychiatrist who can do so.

The Hospice Nurse had talked with their Medical Director, a Physician in Kansas City, about our situation.  She indicated that if we don’t get someone soon, he can make sure we have the medicines we need.

The Hospice Social Worker reviewed the residential options and will do more checking on those.  She provided an idea of costs, indicating the layers from least expensive of having help here at home (of course our preference) to the next layer of small care centers that are in homes with very personal care to the larger nursing homes that accommodate those with dementia.  She mentioned one not far that a Social Worker friend had declared to be wonderful.  A clearer picture of options helps fuel the feeling of having some little bit of power in this situation, some choices.

I also sent the fax to the Neurologist who declined to continue to treat the hallucinations.  I asked if we should still plan on keeping out next appointment in a few months since Mary Ann still has the Parkinson’s, which he has treated for so long.  Then I asked if he would still respond to requests for refills of the medications he has currently prescribed for Mary Ann.

There was one especially interesting sidelight to the day.  Many months ago a request came through the online group of Caregiving Spouses of those with some form of Lewy Body Dementia.  It was from someone in the Chicago area who writes articles targeting Seniors for a Health Insurance provider’s magazine.  The magazine just goes to enrollees in Northern Illinois (if I understand correctly).  When the request came, she was looking for Seniors who did Blogging and had an Illinois connection.  Both Mary Ann and I grew up in Northern Illinois (Aurora).  I responded, but heard no more.

Yesterday she emailed and today interviewed me on the phone.  She had great questions about our situation, how and why I started blogging and what purpose it serves in our situation.  It was just nice to have someone from completely outside our circle spend forty-five minutes paying attention to our situation.  Now that I am not in a circumstances that provide much feedback, it felt good to hear someone who is actually a writer assessing my blog posts in such a positive way.  I have no way to judge the quality of the writing.  I just need to write to get this stuff out of my gut.

When she asked one question, what popped into my mind and out of my mouth was very revealing to both of us.  All through the day I am thinking about what is happening in terms of how and what I might write about it.  I realized that I actually feel as if I am not alone when things happen, especially things that push me past my limits.  Whether or not it is true, I feel as if you who read this are part of what is going on; you notice us; and, judging from the occasional comment, you are concerned about us.  I realize that sounds very self-serving and ego-centric.  It is.  I admit it — but it sure helps.

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.

 

May 23, 2010

Life on the Border

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One foot is in Juarez, Mexico and the other in El Paso, Texas.  I bring no political agenda to this analogy to where Mary Ann is now living.  She lives on the border between two worlds, one visible to others, the other only visible to her.  There are uncontrolled border crossings with no hope of closing the border and controlling the traffic in the foreseeable future.

In fact, she has one foot on one side and one on the other.  There are not always clear indications which side is which.  She apparently holds dual citizenship.  She is documented in both places.  Some days I think she is only on a temporary visitor’s visa to the hallucination side, residing in reality.  Other days I am afraid that it is a permanent visa leading to full citizenship on the hallucination side of the border.

I took some comfort this morning that Volunteer Jan got to see and hear Mary Ann while she was standing on the border between the hallucination side and the reality side, switching with ease from one side to the other with no cue as to when she was where.  It was, of course, clear when Mary Ann was talking to me where she was standing.  At that moment I was a dozen or more miles away at the Lake, mostly sitting in the van vegetating.

After another night of hallucinations and confusion, she got up painfully early, had breakfast and then crashed just before Volunteer Jan arrived.  After a couple of hours sleeping, she got up, and Jan got her lunch (along with some less pleasant duties — sorry, Jan).  It was then that Jan experienced the multiple border crossings.

By the time I got home about an hour later, Mary Ann was napping with her head on the table in front of her chair.  After a while I asked and she chose to go in and lie down in bed.  I probably should also be napping, but here I am writing this.  It is impossible to work on a post while she is awake.

At this very moment, I suspect the Youth of the congregation are coming to the climax of the musical, Godspell.  I realized that we would most certainly not be able to go together to the evening dinner and performance last night.  I thought we might be able to attend the matinée this afternoon.  It was not in the cards.  Mary Ann’s vacillating between hallucinations and deep sleep just won’t allow that option.  I also am too wasted to enjoy it.  My ministry has always been filled with wonderful relationships with Youth.  I focussed on ministering especially to high school Youth for 18 years of my ministry, including three years teaching at a large parochial high school.

As a result of the importance to me of that ministry, I find great power and joy in experiencing the journey Youth are on.  They experience life as if it were being lived under magnification.  Everything is intense and vivid.  Last year I missed the performance of Godspell.  There are many unbelievably talented Youth in the congregation. I heard a CD of their performance last year.  It was not only powerful because I know and care about so many of the kids, but because is was so professionally done.  Just listening to the recorded musical last year produced a lump in my throat and water in my eyes.  As vulnerable as I am at the moment, it is probably best I am not there.  I might have embarrassed myself.

Decisions have to be made about how to proceed now from here, given our life on the border.  I emailed the online Yahoo group of Caregiver Spouses of those with Lewy Body Dementia about yesterday’s and recent challenges with Mary Ann and my ability to care for her.  The responses came from a thorough understanding of our circumstances since those folks live with this situation day in and day out.  Some have been through and are past what we are now going through.  Some are in the same place.  Some are looking at our situation as descriptive of what is to come for them. They empathized and reflected back the painful reality that I will be no good to anyone if I try to go beyond the limits of what I can handle for too long.

My first intention is to call the Neurologist, describe what has been happening and ask how best to go about eliminating the recently added morning dose of Seroquel.  For a week now, the problem it is supposed to help has gotten measurably worse.  I suspect he might again suggest going to a local Neuro-Psychiatrist to check out other options for medication.  I have little hope that there is anyone more competent in dealing with this particular form of dementia located in our community which is much smaller than Kansas City.

In addition, I will continue to experiment with paid help to see what the best times might be and how much we can afford.  I realize a dementia unit will be many times more expensive than having some help here.  The challenge is determining where the tipping point is that shifts the weight from home to facility.  My physical and mental stamina are a part of what will weigh into that measurement.

…It is now a couple of hours later in the afternoon. The doorbell rang a few moments ago.  It was former parishioner Dave, delivering a rhubarb pie that had been saved back to bring to us from the reception after the production of Godspell this afternoon.  You know, the fact that as I was writing about missing the production and the kids, someone was thinking of us warms my insides. After retiring almost two years ago, it is a comfort to think that while gone, maybe not forgotten!

Mary Ann is still in bed and not interested in getting up.  Her eyes are open, but she wants to remain there in bed.  I hope she is willing to get up for a while yet today.  Maybe she is resting up for a busy night of hallucinations/delusions/dreams mixed with reality.  I certainly hope not.  I did nap for an hour this afternoon, but I do not look forward to being up tonight.

She did get up to have a little applesauce, but has now gone back to bed. She was hallucinating almost constantly while awake in bed and out of bed to the table, while eating, and back into bed.  Enough for now.  Maybe I can try the early to bed option on the outside chance sleep will be possible.

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.

 

May 21, 2010

“I forget there aren’t two of you.”

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I tried to find out what differences there are between the two of me.  She never really said.  Last night was the sort of night that usually begins the hallucination days.  She was in need of help a number of times.  It was not a night when she was up every few minutes with a new hallucination, but we were up more than once per hour.  I expect more intense and frequent hallucinations tonight since they have been so strong today.

I remembered the part about sleeping when she is sleeping during the day after a difficult night.  She never napped today.  Hospice Aide Sonya said that Mary Ann kept getting up as she was trying to give her her shower this morning.  Sonya finally just finished quickly since it was not safe while Mary Ann was so anxious (Sonya’s word).

Mary Ann had gotten up very early, as usually happens when the dementia is firing up.  I was surprised that she stayed seated while I got my shower.  She ate three normal meals today.  Only for very short periods of time did she put her head down.  Almost the entire day, she was in pop up mode, demanding my remaining only a few feet away at all times.  Once when the phone rang, she popped up and ended up on the floor on top of the rolling table that is in front of her chair.  As always, she did not hurt herself.  I had to hang up and phone back later.

Finally in mid-afternoon, I was able to get her into the car so that I could get coffee and then get ice cream.  She is actually safest when seat belted in the car.  That way she can’t pop up, fall and hurt herself.  She stayed in the car during our stops.  This time I got her dish of ice cream (frozen custard) at G’s, fed it to her, and then went back to get mine.  I can’t help her and eat ice cream at the same time.

She was talking lots to people that she saw during the day, none of whom were actually there.  I left the room for a moment and she went to the sliding glass door to let in the dog we don’t have.  She quietly asked if I didn’t want to go out on the deck and talk with Daughter Lisa, whom she said was out there.  Lisa is in Kentucky where she lives with her family.  Once when I had given her a lemon bar, after the first bite she said I was trying to trick her.  Then she said something about my going to or coming back from London.  While I have no idea how the Lemon Bar and London were associated, this time there was an explanation for London coming into her mind.  Right at that moment on television a character on NCIS was talking about going to London.

Mary Ann finally decided to lie down right after supper.  I am so grateful to have a moment’s relief from jumping up and grabbing her gait belt as she went looking for one thing or another.

I got Mary Ann up to change into her bed clothes and take her nighttime pills.  I am going to try to get to bed early tonight in hopes that she will sleep a while before the night time hallucinations get going.  Most times any hopes such as those don’t materialize.  We will see how it goes. She already is appearing restless.

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.

I am expecting a worse night tonight than last night.  My hope is that she will nap tomorrow so that I can get some sleep then.

 

May 13, 2010

Half a Night is Better than None

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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She finally stopped sitting up with a new hallucination/delusion/dream filling her reality some time before 3am.  This was my 6:30am morning to arise and get ready for the 7:30am Spiritual Formation group, so I didn’t gain a full half-night’s sleep. It still helped some.  The Group conversation is always very helpful in the matter of maintaining some sort of equilibrium (a hard thing to come by lately).

Mary Ann slept through until Bath Aide Zandra came to do her morning prep.  That allowed me the full time in the group conversation without needing to leave to do a support task for Mary Ann.

By the time Zandra left, Landcaper Sheila and a helper came to so some major work around the street side, as well as the entrance area at the side of the house continuing to the back deck.  She is constructing it to provide a rich palette of color and texture with an eye toward winter scape elements.  Since we are not in a position to get out much, we are bringing a stimulating environment into view from every window of the house.  There are plants that will invite butterflies and hummingbirds in the mix, many that bloom all season long, some that mark the movement of the seasons, some that strengthen the sense of seclusion in the waterfall area.

Having something very engaging drawing attention that used different psychic muscles from those tapped in the caregiving tasks seemed to help.  Mary Ann was not experiencing the same level of intensity in that has made the last couple of days so difficult, and she rested in her chair without hopping up as much as has been the recent pattern.  I was able to go out and check on the project, enjoying the prospect of seeing all the flowers blooming in months to come.

Mary Ann rode with me to get Glory Days Pizza slices for lunch.  Just before Volunteer Coordinator Mary came to stay with Mary Ann for two and a half hours, she lay down for a nap.  While Mary was at the house, I was able to spend time over a cup of coffee with friend and former parishioner John in conversation.  It was helpful just to have the time away, as well as having a listening ear to bend.  John does a good job of listening, and giving appropriate feedback without presuming to be able to fix the situation.

While I was gone, Mary made that rhubarb pie that Mary Ann and I both love very much (mentioned in an earlier post).  It was great to enjoy a piece of that pie after a supper of Lasagna from the freezer that Daughter Lisa had prepared one of the last times she visited, along with fresh asparagus from the country market. Mary brought a beef, potatoes and veggie dinner that we can heat up tomorrow.

Sometime in midday, we received a reminder phone call that our annual carpet cleaning is tomorrow.  We had gotten a reminder post card a week ago, so it should have been no surprise.  Since my mind has been so dominated by the escalating frustration of reaching and passing for a time the ability to handle the intensity of Mary Ann’s needs, it just didn’t register that I needed to get the furniture out of the house, and figure out where to go while the carpets are cleaned and then given time to dry.  In fact I had accepted the offer of a very caring former parishioner who has treated us with great respect, to bring us coffee tomorrow afternoon for a visit.

Gratefully, Jay was willing to meet us for lunch at McFarland’s Restaurant, a place where Mary Ann feels very comfortable.  That alternative also provided a place to be during the carpet cleaning.  We still need to figure out where to go for a while as they dry.  The issue is always finding an accessible place with a bathroom situation that allows me to help Mary Ann.

While I am certainly not at my best at the moment in terms of stamina, I was able this evening to get much of the furniture moved out of the way (downstairs or into the garage).  I am hoping that the one who comes to clean will be willing to help move a table a few feet off the carpet and into the sun room area.

There has been no progress today on contacting the Neurologist about the possibility of increasing dosage of the medication that is supposed to reduce hallucinations (while unfortunately increasing the daytime sleeping and the vulnerability to fainting spells).  The day was active enough that I just didn’t get it done.  I have not yet received a report from the Hospice Social Worker about the possibility of some paid help to cover a morning or two in the week.  Those two things are important since they offer the possibility of actually making a difference in our situation.

I hesitate to say it for fear things will change any minute, but so far tonight, Mary Ann has just had a few needs for turning in bed and using the commode.  She has been in bed for about two and a half hours.  It has been storming loudly off and on for most of that time.  The storms are expected to last almost until morning.  Right now they are noisy but not dangerous. They don’t seem to be bothering her.

As I finished that last paragraph, she started moving.  When I went in, she wanted to get up and go home.  Then I offered her a snack, since she had eaten very little for supper other than the pie.  As I fed her she moved into a very odd sort of mode that made it very difficult to feed her.  She was bouncing as if she was starting to get up.  She did that a couple of times when I had the spoon at her mouth.  At a couple of points it seemed as if she was partially fainting.  After I finally got the last of the applesauce into her mouth, she started bouncing as if trying to get up.  When I asked what she was going to do she didn’t know. I laid her back down and she began talking about everyone getting up and leaving.

Clearly, I spoke too soon.  Judging from her current state of mind, it is reasonable to expect another difficult night.  It is just not getting any better.  I keep thinking we will make it through this round of hallucinating and have a couple of days of sleep with minimal hallucinating interspersed with lucidity.  She is moving back into a pretty intense mode of hallucinations and delusions.  I just hope I can keep her in bed as much as possible, again hoping and praying that she will just fall asleep for the rest of the night.  It is now about 12:15am.

I had better finish this and get bed on the outside chance that there will be some sleeping fitted in before morning.

 

May 11, 2010

She Never Wore Out! The Whole Night!

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , |
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I suppose last night ranks as one of the worst nights we have had.  Mary Ann kept sitting up and responding to hallucinations and delusions and dreams that were her reality at the moment when she sat up.  Each time it was brand new and  real to her.  She seemed to have no awareness that five or ten minutes before there had been a completely different reality to which she was responding.

It just never stopped.  When I saw 3am come around, I hoped that then she might finally let go and sleep, as has happened in the past.  It just never stopped.  I suppose on occasion I slept as long as fifteen minutes when there was that much time between new encounters with her world.

Finally, not long after 6am, I simply could no longer convince her to stay in bed.  I gave up trying.  I turned off the alarm that was set for 7:45am to get her ready for her Bible Study and tried to figure out how to get her to stay secure while I showered.  I knew she wouldn’t stay put in her chair, but I got all her basic needs met, the television going, water nearby and just took the shower.

She was, of course on the floor when I came out.  I checked to see if she was hurt.  She was not.  I put a pillow under her head and let her stay there while I finished.  That way I knew she would be safe and secure.  She said she was comfortable.

Then I got her dressed and fed and ready to go to her Tuesday morning group.  Since she got up so early, she was ready about an hour early.  She continued to hallucinate, but finally lay her head on the little table in front of her chair.  It is hard to describe the sense of relief that came with Mary Ann dozing and ceasing being driven by hallucinations and delusions and living dreams., constantly demanding my full attention.  I was able to get my own breakfast, the wash started, clean the commode, make beds and get things in the van so that I could awaken her and get her to her group on time.

I have admitted before, and I do so again, that this expression of the Parkinson’s Disease Dementia puts me in direct contact with the outer limits of my capacity to endure this Caregiving role here at home.  I am disappointed that I can’t handle it with grace and endurance.  Actually, this expression of Mary Ann’s disease puts me in contact with those outer limits from the other side of my capacity to cope.

There was a last minute bathroom trip, but we did make it to her Bible Study group. She apparently rested some but did all right at the group meeting.

After the meeting we stopped to pick up her favorite steak soup and lemon meringue pie.  I wasn’t sure she would be able to eat, since she had her head down and seemed to be dozing all the while we were in the van.  I did feed her some of the soup and pie.

As soon as that was done we had to get to appointments I had made for us with the Optometrist.  Considering the Hospice trajectory and the fact that a recent visit to an Ophthalmologist (M.D. eye doctor) had revealed that her vision problems are neurological, not mechanical, I wondered about how appropriate it was for Mary Ann to get new glasses.  I decided to ask her if she wanted the appointment so that future possibilities did not determine present action.  Whatever she wanted to do was fine with me.  When we got there, she was just too tired to keep her eyes open for an exam.  She slept with her head on her lap in the waiting room, while my eyes were examined.

My prescription had changed quite a bit in the five years since I last bought glasses.  The cataracts are just in the beginning stages.  My Dad had glaucoma, so I was interested that the eye pressure had increased — not enough to be certain it is a problem.  There was one unsettling observation.  One eye has a hint of the possibility of Macular Degeneration beginning.  I know too many who suffer much from that mostly untreatable condition to look forward to that potentiality.

We got home just in time for Hospice Nurse Emily’s weekly visit.  For her records and my need to share, I describe the last couple of days and admitted that I need help.  I asked her to help me come up with alternatives.  She said that she would call Hospice Social Worker Kristen, since she is the one with the resource information.  Emily took Mary Ann’s vitals, blood pressure at 200/108 — relevant information when considering whether to resume the medication that raises BP to help reduce the fainting spells (see yesterday’s post on our dilemma in that regard).

While Nurse Emily was taking Mary Ann’s vitals, the phone rang.  It was Hospice Social Worker Kristen asking if she could come over to do her monthly visit.  Emily had not yet phoned her.  Interesting timing.

Shortly after Emily left, Kristin arrived.  She got the full and detailed description of the last two days and our medication dilemma.  I was, of course, doing my usual opening of the verbal safety valve by which I survive.  I told her that I planned to phone the Neurologist to see whether he recommends increasing the Seroquel.  I can handle the sleeping (of which she does too much) but I cannot handle the streaming hallucinations for very long, especially when they remove the option of sleep.  The Seroquel’s purpose is to help diminish hallucinations, but it increases the sleep time.  Again, it is a matter of survival.

For her part, Kristen said she would check with a team of four who do some private pay help for other Hospice clients.  The cost per hour is significantly less than the Agency help we now use sometimes.  Because of the unpredictability of the night time needs, we talked about the possibility of one or two mornings a week on a regular basis.  I could use the time to sleep, if that is what is needed, or just get away.  Adding that to the wonderful gift of Volunteers from church who fill slots of time when they are available to do so, might help bring this task back into my range of ability to handle it.

Even at the lower rate, the cost will be challenging.  After the last couple of days, it doesn’t seem to be an option to try to continue without more help.  This evening already, Mary Ann has been hallucinating, requiring trips to the bedroom to explain again and again that it is not morning but evening, it is Tuesday, not Wednesday, there are no painters here.  As I said in last night’s post, I say again tonight, I hope at some point she wears down and goes to sleep for the rest of the night.  She may have napped enough today to gain a second wind.  I have not napped and have no second wind, or, for that matter, any of the first wind left.

It helped to talk with the Hospice folks this afternoon, as well as some of the church Staff this morning after I took Mary Ann to her group.  One thing has become apparent to me.  I do a lot of talking and blogging and meditating and celebrating the natural beauty that is now in view at our house.  Those things help me process what is going on, keep things in perspective, vent some of my feelings.  All of that is very good.  It does not, however change the harsh realities of the difficulty of this task.  None of those tools magically creates super human powers that allow me to handle whatever comes.  I am still a painfully ordinary someone, far too selfish, irritable, whining way too much, with limited stamina and strength.  It is time to figure out a way to get more help.  I am still committed to doing this here at our home.

For now, it continues to appear that tonight will be a repeat of last night.

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

 

May 11, 2010

Between a Rock and a Hard Place

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , |
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Almost every moment Mary Ann was awake today, I was never sure who she was seeing or where she thought we were.  She talked to people, the little girl, her Mother.  She whispered to me that there was some woman standing “right there” inside the van when I was trying to give her some medicine.  In the car after coming out of Perkin’s Restaurant, she asked why “he” gave directions to Laramie (Wyoming, the state in which her estranged brother lives).

That is the rock.  The hard place includes two things.  One is that she has continued to faint often.  There are times during the day when it seems more likely, but it can happen any time.  They often result in a subsequent nap.  That is the second thing of the two things in the hard place.  She has slept during much of the day many days.

The medication of choice to control hallucinations is Seroquel.  The most prominent side effect is that it causes drowsiness and can result in lots of sleeping, day or night.  Another concern the Neurologist mentioned is that Seroquel increases the vulnerability to fainting due to low blood pressure (orthostatic hypotension).  By increasing the dosage of Seroquel, the other problems worsen.   If we reduce the Seroquel, the hallucinations would be likely to increase.

As I have mentioned many times before, the medicine that is used to keep blood pressure up, reducing the fainting keeps her blood pressure at a dangerously high level.  Today in the Dermatologist’s office her BP was 208/93.  That is without taking the med to raise her BP so that she faints less often.

We turn one way and face up against the rock.  When we turn the other way, we face up against the hard place. It is a difficult spot in which to remain for very long without beginning to tire of it.

Because of the unique character of Parkinson’s Disease Dementia/Lewy Body Dementia, there is a sensitivity to sedative type medications that precludes the use of any but a very few.  The choices are very limited.  The problem with trying other meds for hallucinations to see if they will work is that the sensitivity of LBD and PDD results in losses that cannot be regained.  We can’t just try things for a while.  Mary Ann is now on the medications that are most recommended for treating the problems caused by PDD/LBD.

This spot between a rock and a hard place seems to be the place we will be living for the indefinite future.  We choose to live in an intentional state of denial, but it is not easy to maintain it.  While I always hope that the latest sign of decline is transitory and better times will return, it is beginning to seem that the better times are long gone.  The Neurologist of someone in the online LBD spouses group told her that some time her husband would have one of his fainting spells and just not come back. Sometimes having a support system that includes lots of information about the disease one is dealing with includes too much information.  Some things are better not to know.

I have rushed to the bedroom a dozen or two times as I have been writing the last few paragraphs.  Mary Ann is hallucinating and pretty adversarial and angry that I don’t respond appropriately to things that simply make sense to me or have no corporeal existence outside of Mary Ann’s mind.  I can only wait until, hopefully, she just wears out and goes to sleep.  She has been in and out of fainting most of the times I have gone to the bedroom to get her back into bed.  In fact she has been vocalizing some while fainting, sometimes acting in a belligerent way while in that state.

This morning I knew problems were beginning.  She was up a number of times very early, and when she could no longer stay in bed, she had that intensity that signals the beginning of the streaming hallucinations.  There was some fainting early on, but Bath Aide Zandra didn’t have problems with her.  After Zandra left, I got her breakfast and pills.  She sat in her chair for a while in pop up mode, but soon put her head down.  Finally, she wanted to lie down.

After lying down, I got her up to go to the Dermatologist appointment she has been asking about for a couple of weeks, often thinking it was the day of the appointment. She was concerned about some bumps she felt on her head.  There were no problems discovered.  The nurse asked Mary Ann what she was doing at one point.  Mary Ann said she was separating her fingers.  It was the thread or gold chain hallucination.

I just headed back to the bedroom again.  She asked if they served breakfast and lunch.  I confirmed that she thought it was a motel.  I tried to convince her that she was in her bedroom.  She responded angrily that I kept moving her from house to house.  I asked if she wanted some applesauce.  She said yes.  Then while I was getting it, she got up, walked around the end of the bed to the area between the beds and fell.  She did not hurt herself, but that spot is one from which it is almost impossible to extricate her.  The only alternative was to lift her straight up and on to the bed.  My back reminded me just how risky that move is.  That  area between the beds is too small to get the lift in and manage to put the sling around her.

I got her around to the side of the bed and started feeding her the applesauce.  She fainted, completely falling into me since I was sitting next to her.  Even when finally she was awake and ready to eat again, I had to hold her up and try to keep her hand away from her mouth so that I could get the applesauce in.  Sometimes when I am feeding her, she moves her hand to her mouth as if she is feeding herself.  I have to try to figure out how to get the food around her hand and into her mouth.  She gets irritated when I push her hand out of the way to get to her mouth.

I finally got her back into bed.  I am sure she will be up again soon.  Needless to say, this has not been one of our better days!  Here we go again — again demanding lifting and shifting and adjusting her in bed. Each time I have gone to help her there has been the same need for the physically demanding help.  This is another one of those times I am wondering how long I will last.

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.

 

May 9, 2010

Mary Ann Sleeps — Oriole Entertains

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , |
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The hallucinations/delusions/dreams mixed with reality finally calmed enough by about 3am this morning for her to get to sleep.  The good news is that she stayed asleep long enough so that I could get caught up.  I got up a little before 10am.  She slept on until almost noon.

While she slept this morning, I filled a couple of feeders and then sat inside watching the activity outside on the deck, at the bird feeders and in the waterfall area.  The experience reminded me of pictures of folks going through an aquarium that has an underwater tunnel allowing them to watch the fish from inside their environment.  I sat in my little box (made of ticky-tacky??) as an observer, while they were foraging out in the open.

It was better than watching a huge high definition television screen.  There was a new character who joined the cast this morning.  It took me a few minutes to be sure what that flash of color was.  It was a Baltimore Oriole in search of food.  I had hung a Hummingbird feeder, an Oriole feeder and I had put out a dish of grape jelly, with little hope of actually enticing an Oriole to come by and spend some time.

The Oriole seemed a little confused.  He fluttered back and forth toward the glass of the sun room.  He moved to one of bushes next to a side window in the dining room and flew at that for a little.  Then he fluttered over to the hummingbird feeder and hung pretty much upside down, apparently managing to get some of the sugar water.

Then he moved over to the rail just below the Oriole feeder and not far from the dish of jelly.  Surprisingly, he just did not manage to spot the jelly, just two feet from where he was standing.  He fluttered up to the Oriole feeder and did not drink any of the orange sugar water there, but found the little pockets of jelly around the edge of the feeder.  By the way, I am using the word “flutter” very intentionally.  It was not just flying he was doing, it was what looked like very haphazard fluttering of his wings, allowing him to fly in place while trying to figure out where and how to land.

After Mary Ann finally got up, she ate a normal breakfast (she had not eaten supper last evening).  She was very subdued — almost completely non-verbal.  After eating, she agreed to head out in the car to do a few things.

Of course the first stop was PT’s for a cup of coffee, a single origin Ethiopian this time.  Then we went to a grocery that has a large seasonal garden center set up on their parking lot.  There we found a favorite hanging plant with small deep blue blossoms (sorry, no tag on the plant with its name).  Rather than hanging the plant, I put it right outside the lower window next to the sliding glass door to the deck.  That is the spot the Robin used for staging his attacks on his reflection in that glass panel.  The two spots on the deck on either side of the sliding glass door have provided the bonus of serving as perfect display areas for enjoying flowering plants from inside and outside.

After getting the plant (for Mother’s Day), we went to the farm produce store north of town to get asparagus.  We usually get three or four pounds each time we go since the season is fairly short.  The only other item they had that was from their own fields was Rhubarb.  I couldn’t resist it.  Mary Ann’s Rhubarb pie is so good that given the choice between a piece of that pie and a Turtle Sundae from G’s, I would eat the pie.  Those of you who know me well understand just how good that pie must be. The problem with getting the Rhubarb is that there is a long way between a handful of Rhubarb stalks and a piece of that pie.  Whether that long way will be traversed any time soon remains to be seen.

By the time we were back in town, Mary Ann was ready to have lunch.  I had only had a banana for breakfast, so I was anxious to eat.  We went to her favorite, Bobo’s, for a cheeseburger and fries.  I had the more healthful fish sandwich, deep fried and slathered with tartar sauce. Mary Ann was able to handle the burger and fries with little help.

After lunch I stopped at the Wild Bird store to pick up a couple of things and get some lessons on Oriole and Hummingbird feeding.  The message was, throw out the old sugar water and make new.  That is what I did when we got home.

Mary Ann had started dozing in the car, so as soon as we got home, I got her in bed to nap.

While she was sleeping and after I finished redoing the feeders, I sat and watched the big screen nature channel provided by the sun room glass.  One thing that I had noted when doing the feeders was that something had been at the grape jelly.  After a time of watching, the Oriole returned and headed directly for the jelly.  I hope he brings friends.

Mary Ann has slept straight through supper (I tried getting her up, but it didn’t work).  At about 9pm I got her changed into her pajamas and and the nighttime pills taken.  She still did not want to eat.  She finally stirred a little about fifteen minutes ago (about 10:40pm).  I sat her up and asked if she wanted something to eat.  She chose a single serving container of applesauce.  It turned out to be a bit of a new experience.  As I put the second spoonful in her mouth, she seemed to resist.  I went a few feet to get a nearby napkin.  When I turned back around, she had fainted and was completely out, gratefully having fallen to the side, still on the bed.

I got her back up into a sitting position after she came around and continued to feed her the applesauce.  She fainted again.  This time I was sitting next to her on the downhill side, so I was able to hold her up.  After she came around again, I resumed feeding her the applesauce.  With only a spoonful left she went out again.  This time I got her down to the pillow, moved her around into a comfortable position, where she is at the moment.

I am concerned that the daytime sleeping a third day in a row is fueling a switch between day and night for her, sleeping in the daytime and agitated at night with hallucinations, delusions and dreams confused with reality.  I am not sure what to do about it, since when she sleeps during the day, it is not just a light sleep from which she can be kept awake by urging activity.  She just shuts off.  She can’t stay awake.  The converse is also true.  When she is awake at night, she just can’t make herself sleep and not dream or hallucinate or have delusional thoughts.

I am very grateful for the pleasure and the calming that comes with sitting and watching the activity outside those panels of glass in the sunroom.  It does not seem to get boring since there is always the hope of some new cast member joining the regulars, the Mallards, Mourning Doves, Grackles, Robins, Blue Jays, Cardinals, House Sparrows, House Finches, Cowbirds and Fox Squirrels.  The Possum only comes at night, so I have not enjoyed watching him, just dumping the Possum pellets out of the ground feeder in the morning.

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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