May 27, 2010

I Keep Waiting for Their Return

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

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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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 25, 2010

Been Dumped!

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , |
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I called this morning to find out how we should go about reducing the medication that seems to be making things worse.  Through his nurse, last week we were instructed to call back after a few days on the newly increased dosage of the Seroquel.  When she called back, she simply said that we needed to find a Psychiatrist to manage the dementia and the meds.  We have just been set adrift and are on our own.

This University of Kansas Neurologist specializing in Parkinson’s is the one on whom we have depended for about fifteen years now.  There are very few options where the kind of expertise needed to deal with Mary Ann’s complex version of Parkinson’s is available.  KU med center is one of the few places in the country.  None of the rest are close enough to do us any good.

I need to find out whether or not he is still willing to continue prescribing the medicines dealing with the motor issues associated with the Parkinson’s.  Then there are some meds that have impact on the dementia, but were prescribed by the Neurologist to deal with the Parkinson’s.  He also prescribed some of the meds that are intended exclusively to help with the dementia.  What happens when we need a refill?

When I asked during last week’s phone call if there were any Psychiatrist’s at the med center to whom we could be referred to manage the medication the nurse curtly told me that they were not taking new patients.

I have begun checking to find out if there is anyone here in this area who is competent in dealing with Lewy Body Dementia [LBD].  It is enough different from Alzheimer’s Dementia [AD], that it will not be adequate to simply be aware of the usual treatments for AD.  So far the responses seem confirm my impression that we are underserved in this area with good Psychiatric/Neurological care.

Whether rightly or wrongly, I have concluded that generally the medical community loses interest in folks in the later stages of life.  Hospice does a wonderful job of helping people during those years with end of life care.  They, however, are not in the business of treating the diseases that bring people to that point.

I will seek out the best care that I can locate here in this area and try to draw the best out of whomever she sees for care.  My goal remains to have the best quality of life possible for as long as possible in the face of a progressive disease process that we cannot stop.

I am apprehensive about how things will go now that we have discontinued the extra morning pill that seemed to make things worse.  It is a pretty powerful medicine.  Reducing it can have a negative impact.  Tonight Mary Ann seems unable to speak clearly — the words are slurred and pretty much unintelligible.  It is making the simplest communication very difficult.  It took a long time to determine that she wanted to sit up on the side of the bed and have some water.  When I gave her the water, she seemed unable to use the straw.  The years of experience giving people wine from a chalice during my active years as a Pastor came in handy as I helped her drink directly from the cup.

This morning Mary Ann got up very early again after a number of times up earlier in the night.  I actually can’t seem to remember how much sleep I got.  I did get to bed pretty early for me.  I think I got a little more between Mary Ann’s dreams.  She was again hallucinating constantly.  This morning she was actually pretty entertaining with some pretty silly comments.  She ate breakfast, then Bath Aide Zandra came.  She did not seem to do well and afterward was unclear that it was Zandra who had been here.

She napped a bit, rested with her head down some of the time.  Lunch was a little harder than usual to get accomplished.  Supper was tough since she just couldn’t hold her head and the upper part of her body up for me to feed her.  Holding her up and feeding her is really very difficult to do.  When we finished, she had eaten a fair amount of meatloaf, if little else.

Volunteer Tamara came this evening while I got to the grocery store.  It has been tough to get out lately even to do the basics.  Mary Ann is now in bed, but she seems to be having trouble settling.

I am dreading the task of finding competent medical care, developing a good working relationship with him/her, and adjusting to whatever changes in medications and treatments may be involved.  It is hard to walk into a new situation in which I bring 23years of intense study on this particular patient, but those with whom I am sharing come with the confidence that they are the experts whose decisions must be accepted as the final word after a few minutes of conversation.  We have been spoiled by having doctors who have listened well and communicated well.

I am looking for some good to come from this transition.  It often happens that paths we would not have chosen bring us to a better place than we might have gone otherwise.  I can hope.

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

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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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 22, 2010

Perfect Storm Damages Resolve

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
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Can it get tougher?  Apparently so.  Those who read this regularly must be getting awfully tired of hearing about the list of problems Mary Ann is dealing with and my complaining about their impact on me.  I debated even about writing a post today. It was ugly and messy.  My reaction was noisy and complaining.  There was absolutely nothing entertaining about today’s perfect storm of problems converging at one time. There is no resolution in sight.

Each of the elements of this perfect storm by itself is enough for Mary Ann and me to deal with.  I will describe again the ones relevant to this meteorological marvel.

One element:  Mary Ann has had Parkinson’s Disease for more than 23 years.  The medication of choice for Parkinson’s is a form of L-dopa.  The brand name is Sinamet.  That is the only effective medication for providing mobility.  Without it, Mary Ann stiffens and becomes rigid from head to toe.  After years of taking Sinamet, a side effect is wavy involuntary movements of body, arms and legs (as seen when Michael J. Fox is in the public eye).  Those movements are called dyskinesias.  The result is legs twisting together, body shifting one way and another, arms moving this way and that.

Another element:  People with Parkinson’s Disease develop problems with the functioning of the Autonomic Nervous System [ANS), the part of the brain that runs a whole list of activities in our bodies, activities that happen without conscious intervention.  In a small percentage of those with Parkinson’s, the ANS’s ability to quickly constrict blood vessels when they stand up keeping their blood pressure high enough to make sure that the brain gets enough oxygen no longer remains consistently able to do so.  That means the person affected gets dizzy at best and loses consciousness at worst.  Mary Ann has won the unfortunate privilege of having a severe and erratic version of that problem.

Another element:  Again, only a moderate percentage of those with Parkinson’s Disease develop Parkinson’s Disease Dementia.  There seems not to be a clear and consistent assessment of the percent of folks who move on to the dementia. This form of dementia is a form of Dementia with Lewy Bodies.  While there is no good dementia, it is a particularly insidious form of dementia.  More than memory issues, it is about visual hallucinations, delusions of all sorts, and vivid dreams that cease to be differentiated from reality.  There are few available in the way of medications that control the symptoms.  Most that might do so ultimately make the symptoms worse.

Another element:  One of the problems that comes with Parkinson’s is bladder activity.  There is the need for many trips to the bathroom day and night.  Because of the movement problems that come with Parkinson’s, help is needed when using the bathroom or bedside commode.  Another of the problems that come with Parkinson’s is sleep issues, the ability to get to sleep, stay asleep, disturbing dreams that interrupt sleep.  Another problem is that those with dementia often hallucinate most at night.  The combination of those problems is that those with Parkinson’s and those who care for them often have sleepless nights.

Another element:  One of the central non-motor problems with those suffering from Parkinson’s is constipation, intestinal issues.  The ANS not only runs the smooth muscles around the arteries, but the smooth muscles that move food and waste through the alimentary canal.  Those muscles slow reducing the natural ability of the intestines and colon to move things along.  Miralax and Senna are the tools of choice needed for Mary Ann to keep her insides running.  The result is not always orderly when finally there is activity.

Now to the Perfect Storm.  We have had two sleepless nights in a row, hallucinating has gone wild, morning, noon and night.  Just as we headed into the bathroom, the dyskinetic movements kicked in with a vengeance.  Then came the horrifying last element of the perfect storm.  There was soft and nasty matter that ended up spread on her back side and legs from her waste (on shirt) to her ankles.  My job was to clean her while she was popping up (the dementia – no matter how many times or how loudly I asked her to stay seated), fainting again and again, legs twisting and crossing and rubbing against one another when sitting or standing (with me using all the strength I could muster against her leg muscles to keep them apart), again, while trying to clean her up. There was another bout later in the day — not as bad, but not too far from it.

The hallucinations are still continuing tonight.  She has been hallucinating all day.  A short time ago I had two trips into the bedroom trying to convince her that it is time to go to bed, not get up.  Four minutes after the second trip in, finally convincing her that it is dark out, time to be in bed, she got up trying to get ready to go to church.  Last night once I woke to her sitting on the side of the bed yelling “help” and when I sat next to her she said someone was going to rape her.  This morning she woke me as she was sitting on the side of the bed crying, describing her beating at the hands of a policewoman who kept pounding on her.  I am afraid that the images from all those Law and Order episodes are folding into her hallucinations. I have been in at least a dozen times in the last hour or so.

Even though we had difficult nights, the the last two nights, this morning I managed to sleep while she napped for a couple of hours.  The perfect storm came right after that nap.  I was completely exhausted physically and mentally after the major bathroom battle.  Everything hurts, muscles, gut and mind.

These events are hacking at my resolve, my commitment to see this through to the end here at the house.  I am disappointed in my own seeming inability to handle this, but more horrified at the thought of not keeping my commitment to caring for Mary Ann at home.  I don’t want her not to be here, so that resolve is not just for her sake.

I wrote a bit on my dilemma in an email to the online Lewy Body Dementia Spouses’ group (many of whom have had much more difficult situations than mine).  One response was simply this little poetic piece:

who knows who knows
what do you do
when you break your commitment
or it breaks you

For now, I am taking some small comfort that while what happened this morning took me far past my ability to cope, I still did it.  I had to.  I am still alive, in some more pain than I care to have, but alive.  …and, for that matter, so is Mary Ann, alive and clean — still hallucinating in a steady stream.  I doubt there will be much sleep in this house tonight.

One reminder to those who wonder that you don’t hear from me (a retired pastor) glowing words about my faith life making this task easier to endure. Nowhere does there come any promise that life will be easy, that we will feel less pain, experience less frustration, because of our trust in our Maker and the One who healed our relationship with that Maker and the One who inspires us with His Power.  My faith is not weakened by my human weakness.  Instead, the One who does the healing retains the power.  I am all the more grateful that the healed relationship does not depend on my strength, but His.  His strength, my weakness.  That is the heart of the message of the Cross.

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.”

Posted by PeterT under Daily Challenges, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , |
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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 21, 2010

What Do We Do Next?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , |
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Medical solutions seem to offer no help, but instead worsen symptoms.  It may be too early to tell.  I hope so.  It seems as if the increase in the medication of choice for controlling the rampant hallucinations, made them worse for two days and nights.  Now it appears that the concerning side effect of lowering blood pressure resulting in the inability to stay conscious has surfaced with a vengeance.

Last night Mary Ann for the second night in a row, slept through the night.  On the one hand, I am very grateful.  She got rest raising the possibility of becoming more lucid with less intensity in the hallucinations.  I have been able to sleep.  Last night I got almost ten hours of sleep.

Mary Ann slept from around 6pm last evening to 10am this morning without moving a muscle or using the commode even once.  The time she has been up, she has not been hallucinating to any substantial degree, at least it has appeared that way.

So what is the problem?  I fed her breakfast and pills.  She was up for while, quite subdued, but awake.  She got hungry again and wanted to eat something.  I got her a sandwich.  At the second bite, she pretty much fainted just sitting in her chair.  I could get no response.  I tried to get her from the chair at the table into her transfer chair with the wheels so that I could get her to the bed.  She was completely dead weight.  I tried to do it, but she slid to the floor.

After switching the chair into a different position and trying to slide her body into a different position, I noticed a little dyskinetic movement, the movement that tells me that her Sinamet is kicking in.  I pulled her up the way I usually do, hoping her auto pilot would kick in.  That and the Sinamet provided enough help from her to get her into the chair.  She just hung in it, limp as a rag.  I managed to get her into bed, where she stayed for a couple of hours.  That happened just at the time we were to leave for an eye appointment to see about new glasses.  I phoned to apologize and tell them that she would not be coming.  It has apprears to me that there is little chance she could function well enough to answer all the “which is clearer” questions.  I did not reschedule.

She finally began stirring enough to allow me to get her to sit up and try again to eat something.  While we were doing that some Members of the congregation phoned, Gen and Dwight, to bring over a little something from the a group of older adults in the congregation.

When they arrived, they greeted Mary Ann and she responded.  She had chosen to stop eating after about half of the sandwich was eaten.  She continued with some more chips and Pepsi.  Gen and Dwight and I talked for a while as Mary Ann was sitting at the table.  After a time Mary Ann fainted again.  I went over and stood behind her and held her up in the chair as we finished our conversation.

After they left, I took Mary Ann’s blood pressure.  It was 95/65.  She was pretty much completely out.  I managed to get her into the transfer chair.  Again, she was dead weight.  with the same difficulty, i got her into the bed.  I have not been able to get her up since.  That was more than four hours ago.

If the increase in Seroquel does not allow her to stay conscious, it is not an acceptable solution to the problem of uncontrolled hallucinations/delusions/dreams mixed with reality.

At the moment, all I can do is watch and wait to see what tonight and tomorrow bring.  Depending on what happens, I will decide whether to phone the Neurologist tomorrow or Monday to talk about whether or not to continue the increased dosage of Seroquel.  It is tough to see options dissipate as we seek to make the best of this combination of problems.

…It is now much later in the evening.  At one point Mary Ann got up just long enough to change into her bed clothes.  She wanted to get right back into bed.  This time she did not fall back asleep.  After a bit, she pushed the doorbell button on the bed stand to call me.  When I came in, she said she had been yelling for me.  Since I was watching her carerfully on the monitor and the door to the bedroom was open, I knew there had been no yelling.  She said she wanted me to get her back into bed.  She was lying in bed when she said it.  I asked her where she thought she was at the moment.  She said “on the toilet stool.”  She had thought I had left her there and forgotten about her. I pointed out that she was in bed.

I asked her if she wanted something to eat since she had not had supper.  She agreed that she did.  I had made some chicken salad from a packet and ingredients given to us by Trudy and Coleman who visited last Sunday.  Mary Ann ate the half sandwich and chips followed by a bowl of ice cream.  She fed herself the sandwich and chips.

I am suspecting that the dementia will be returning tonight.  Oddly, it seems that when she is most verbal, able to walk and take care of herself (eat on her own), the dementia is beginning to fire up. She is back in bed now, but has called me two or three times for one thing or another.  She is no longer fainting.

Based on prior experience, it just seems as if she will be up much of the night tonight.  We will see.

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 19, 2010

She Slept Last Night

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 am not sure either of us would have survived another night of constant hallucinations.  She slept soundly last night.  This was my early morning, but it still felt good to have almost six hours of sleep.

Wednesdays are often very active days in our household.  Mary Ann slept through my time in the Spiritual Formation Group that meets here.  I got full advantage of another thought-provoking and nurturing time focused on the Presence of God in our lives.  The conversation was stimulating, meaningful and very engaging.

Bath Aide Zandra came shortly before the group time was concluded.  She had to awaken Mary Ann to do the morning prep tasks.  While Zandra was doing her task and our group was concluding, Parish Nurse Margaret came to spend some time with Mary Ann.

I chose to do the breakfast and pills with Mary Ann to maintain our routine.  Then as Margaret finished with Mary Ann’s toast, I started preparing for Kristie’s arrival.  Kristie does the monthly thorough cleaning, since I am all but useless at the task of house cleaning, especially the abhorrent task of dusting.  Kristie arrived just as I started the task of putting things away so that she could get to as many uncluttered surfaces as possible.

While Margaret stayed with Mary Ann and Kristie cleaned, I got a break to go and get more birdseed.  The little piggies are devouring seed at a phenomenal rate.  That is my part of the deal.  Their part is to provide us with hours of entertainment.  Yes, my feeding them is self-serving — but they do get something out of the deal.  Today is another rainy day, bringing lots of bird activity.  Unfortunately, there is evidence that the raccoon(s) have returned.  Unless a flock of birds came during the night and devoured a couple of pounds of seed, the cute but annoying little beasts are back.  Rather than messing with trapping, I plan to bring the feeders they bother into the house each night.  They can just argue with the possum over the seed in the platform feeder by the waterfall area.

Shortly after 1pm, a couple of folks came to talk about scheduling some paid time with Mary Ann on a regular basis.  This option came as a referral by Hospice Social Worker Kristin.  These folks are more reasonable than the Agency we use some times, and all of them are either licensed CNA’s or LPN’s who have had lots of experience with folks with Mary Ann’s sort of problems.  Glenna had served someone with Lewy Body Dementia and reviewed information about it on the Internet before coming to meet with us today.  We will begin with a Monday time the second week in June and just see what seems to be the most helpful.  She said that between her and three others like her, we should be able to get help on fairly short notice if needed.

Then at 2pm Volunteer Clarene came to be with Mary Ann for a couple of hours this afternoon.  At the same time former Parishioner Jay came by with a Latte for Mary Ann and coffee for me.  After we all talked for quite a while as Mary Ann was napping, Jay and I headed to PT’s just for some relaxed conversation (and more coffee).

Mary Ann spent a good deal of time today resting her head on the table.  When there was interaction, there seemed to be minimal evidence of hallucinating.  She napped in bed for a time this afternoon.  She was up for a bit when Clarene was with her and had a little more of the pizza I had gotten her for lunch.

After I returned we sat up together for a while, but she soon wanted to get changed for bed and lie down.  As always I don’t really know what to expect as to how the night will go.

As to the increase in the Seroquel, last night did not confirm that in Mary Ann’s case it increases hallucinations instead of reducing them.  The last increase many weeks ago produced a couple of bad days followed by some good days.  I would like for this increase now to produce some good days.  I am not even willing to hope that it will be so.  That sort of hope just sets me up for disappointment.  It is possible there will be some better days, but it doesn’t really seem very likely to me — possible, but not likely, that is tonight’s mantra.

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 19, 2010

2nd Tough Night and Morning

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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Last night was a little more constant than the night before in the rampant hallucinations/delusions/dreams mixed with reality.  This morning was at least as tough as yesterday morning.  She speaks clearly and with a strong voice.  She can get up and walk on her own, and I just hang on to the gait belt, helpless to change her behavior as we move this way and that.

She got up very early, when i could no longer coerce her into staying in bed.  After breakfast and pills, she was up and running for an hour or so.  Then she went into the bedroom, with me tagging along, and decided to get back into bed.  I, of course, was completely wasted from two nights in a row.

We had an appointment with a quality control worker from Wichita to evaluate the care we are getting from the state agency through the local County office.  For us that meant evaluating our Case Worker and Bath Aide.  She arrived a short time after Mary Ann had gone back to bed.

When the Evaluator arrived, we went into the bedroom to see if Mary Ann was awake enough to participate.  Mary Ann said she would participate but was clearly unable to do so.  I explained that we had been up two nights in a row resulting in her needing the sleep.  The Evaluator asked if she was sick.  Admittedly, I was baffled by the question since she was here to Evaluate the people helping us because Mary Ann is debilitated.  I told her it was the Parkinson’s and the Dementia that were at issue.

The Evaluator got the information needed for the form.  She was pleasant and understanding, even though her initial question had seemed pretty silly to me.  In the course of the appointment, she asked if I would be getting any rest.  I said that while I usually don’t rest during the day, I would have to do so if there was one more night anything like the last two.

After she left, I did some chores.  I continued to think about the option of my getting some rest during the day.  I chose not to do the variety of things that I would normally do with the break provided by her sleeping.  I went in and lay down to allow myself the option of getting some rest while Mary Ann was sleeping.  I actually slept for a couple of hours.

The negative of sleeping when Mary Ann is sleeping is that I lose time that is free for me to spend on things of interest to me, helping me keep my sanity and get some perspective on the daily struggles.  It is hard when all my waking time is taken by the caregiving tasks themselves.  This has, however, come to be a matter of survival.  If there is any hope that I can keep doing this while the dementia is in full swing, I have to get some sleep.  I am hoping that I can manage to continue to use at least some of Mary Ann’s rest time as my rest time as well.  I have to relent on my intention to keep nights for sleeping and days for waking.  I have tried not to reverse those two.  I no longer seem to have a choice on that matter.

At least once before, I had decided that it was time to look at facilities that might be acceptable for Mary Ann’s full time care.  I am again at the point of considering at least getting enough information to be able to know where to turn if things get too much harder here.

Hospice Nurse Emily came for her weekly visit this afternoon.  Mary Ann had just gotten up from her nap (as had I).  I tried to feed Mary Ann some lunch, but she just couldn’t handle even the chips and Pepsi.  She could barely suck on the straw enough to get the Pepsi into her mouth.  She only managed a very few chips when I was able to get them into her mouth far enough for her auto pilot to kick in and the chewing start.

Mary Ann’s Vitals were good.  Her blood pressure was 124/74.  That is about as good a set of numbers as a person could have — of any age.  Needless to say, next time those numbers could be half again as high or a third lower (as in the last two times it was taken).  Emily agreed to call about the progress on the possibility of having some paid help through Hospice so that I could count on a certain time for R&R each week. Emily did make that call, and one of the Aides is coming tomorrow to talk about the possibility.

Mary Ann was up for a while, but subdued, mostly with her head down on the table.  Eventually, she headed in to take a nap.  She was not interested in supper.  When Volunteer Barb arrived to spend time with her this evening, I went to check on Mary Ann to see if she needed anything before I headed out for a while.  She wanted to change into her pajamas and stay in bed.

After I returned and Barb left I checked again on Mary Ann.  This time she did want supper.  I got her a left over pulled pork sandwich and chips.  She ate pretty well and then went back to bed.  I have no reason to think that tonight will be any different from the last two nights, but I can hope.

I did phone the Neurologist’s office and leave a message reporting on Mary Ann’s behavior since we are trying to decide if the addition (three mornings ago) of the morning half tablet of Seroquel is helping more than it is hurting.  At this point, I am not sure what I think about that.  It does seem as if the consistent level of the hallucinations the last two nights suggests the medicine is having a negative effect.  Tonight may confirm that, or just sustain the confusion about what the medicine is or is not doing.

In the time away this evening, I read another section in the book on St. Patrick’s Breastplate, by Marilyn McEntyre, the verse that says, “Christ to comfort and restore me.”  There is a poem included in that section, a poem that is fitting for those with or without a religious affiliation.  The poem was triggered by seeing an acre of valuable, arable land sink into the river.  It is “The Slip” by Wendell Barry:

The maker moves – in the unmade, stirring the water until – it clouds, dark beneath the surface, – stirring and darkening the soul until pain – perceives new possibility.  There is nothing – to do but learn and wait, return to work – on what remains.  Seed will sprout in the scar. – Though death is in the healing, it will heal.

This is what she says in her commentary following the poem: “Three truths emerge conspicuously from this little passage that offer a durable way of understanding comfort and restoration: (1) there is nothing to do but learn, wait and return to work on what remains, (2) seed will sprout in the scar, and (3) healing and death are not always mutually exclusive.”

At this point in our journey, I am earnestly searching for the sprouts that are emerging in the scars left by the Parkinson’s and Parkinson’s Dementia.  Some are easily apparent, others still in hiding.

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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