December 12, 2009

But we don’t have a little Black Poodle.

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We did have a little black poodle.  In fact we had two — one for thirteen years and the other for sixteen years.  MAT’s Happy Suzette was Mary Ann’s dog.  We got her from friends (with her papers).  She was our first — the pet that comes before children.  Actaully, she barely tolerated the children.  She was Mary Ann’s dog.  She was pretty grumpy.  When Mary Ann went to the hospital to have our first child, Lisa, Suzette tore a hole in the bottom sheet of our bed, scratched until the threads that formed the pattern on the bedspread were all in a huge clump in the middle of the bed, and destroyed two souvenirs from our trip to Europe, a decorative candle and a hand carved wooden horse from Oberammergau, Germany. 

After Suzette died, KC Sugar Dandy joined the family.  She was a happy little character who knew nothing but a time when the kids were here.  She fit right into the family since she loved ice cream.  She lasted sixteen years.  After she was gone, a few years ago, we decided not to tackle having a dog again. 

When we were heading out to Mary Ann’s spot in the living room this morning, she sort of jumped and told me not to run into the dog.  I asked her to describe it.  She said it was a little black poodle. 

After she got up annoyingly early, took pills and ate breakfast, she decided to lie down again.  There had been a pretty substantial fainting spell.  She slept for about two and a half hours.  During that time, the plumber came and replaced a leaking garbage disposal.  It seems clear that they are made in a way that includes planned obsolescence. 

When she got up, we headed out to Perkin’s for her pancakes and bacon.  We ran home for a bathroom stop after the restaurant.  When I was wheeling her from the door to the garage around the corner of the stairway railing, in a matter of fact voice, said, “put something on.”  I asked her who she was talking to.  She answered, “Micah.”  Micah is our now thirty-seven year old son. 

Since she was not sleep deprived it surprises me a bit that the hallucinations have worsened.  I mentioned in last night’s post that she saw the Thursday people and asked me to close the bedroom door for privacy’s sake while she used the bedside commode.  I referenced them today, and she is still convinced that they are real. 

We did some Christmas shopping in mid-afternoon.  As short a time as we spent doing it, with only two stops, it wore both of us out.  Neither of us are good shoppers anymore.  I am the get-in and get-out sort of shopper. 

I have been using the word “decline” a lot in the last few weeks.  Mary Ann seems to be weaker, in need of more help in walking.   She struggles with eating far more than in the not too distant past.  At least it seems so to me.  Her urinary incontinence has increased substantially in frequency and quantity. 

It was reassuring a couple of weeks ago to hear a description of Mary Ann’s heart and kidneys that seemed to suggest that the decline in the cardio-vascular system is pretty slow.  She is at risk, of course, but fairly stable in the last couple of years.  The Neurological problems, the Parkinson’s, Parkinson’s Dementia, Autonomic nervous system problems seem to be more intent on taking us to a less happy place. 

I looked at the monitor and could not see her.  When I got to the bedroom (moved very quickly), she was sort of wandering in between the beds.  She wasn’ t sure where she was going.  She had a mild fainting spell.   I had to manipulate her to the center of the bed.  Then she wanted to use the bedside commode and fainted again.  After I finally got her positioned facing the way she wanted, I understood her to ask if she needed to run somewhere. 

I have begun realizing that the physical demands on my body in caring for her seem to be on the increase.  Manipulating her in bed is becoming painful in my lower back almost to the tailbone.  I am holding her up more when we walk.  I hold her tight at my side and almost carry her along.  The awkwardness of helping her up and down from the commode, holding her up with one hand while pulling up her underwear and then pajamas with the other is seeming to be more taxing as she seems to be less able to help in the process.  No one change by itself is very dramatic.  It is the cumulative effect of a number of incremental changes that seem to be adding up to something noticeable and a little troublesome.   It could not have anything to do with my getting older, fatter and getting no exercise other than what I do to help Mary Ann. 

Let’s hope for a good night from now until 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.

 

December 11, 2009

A Good Night Out

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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If you have not heard “O Holy Night” sung by Kristen Watson, you have not heard “O Holy Night!”  Music has the power to break through defenses and touch us at the core of our being.  When trite or contrived or done badly, it has no power but to annoy.  When done well, with honesty and integrity, there is no defense that can repel its power to engage one’s spirit.

When Kristen sang “Gesu Bambino” there were no defenses left.  The last note with its quiet and gentle power, set the stage for “O Holy Night.”  Since retiring from the Pastoral Ministry, a combination of Caregiving demands and traveling to visit family have diminished dramatically the opportunities to attend the most powerful worship opportunities at Christmas.  Last night’s concert was an experience powerful enough to fill the spiritual longing that comes with each Christmas season.

What added to the deeply felt comfort was that I was able to sit with Mary Ann in the little raised area for those in wheelchairs.  My ticket was for a seat behind and a dozen feet away from Mary Ann. I couldn’t bring myself to sit down separated that far from Mary Ann.  It surprised me a little to feel so strongly the need to be next to her.  In the past, I have generally retreated into my own world at concerts, listening intently, immersed in the music.  Someone suggested the possibility, and I checked to be sure it was acceptable for me to sit in that area.  Companion Care Aide, Debbie, sat on the other side of Mary Ann.  As it turned out, there was no need for a trip to the bathroom during the concert.   All of us got to experience fully the entire program of music from silly to sacred.

There was a dimension to the evening that I did not fully anticipate.  Having retired from the role of Senior Pastor at the congregation I served for over a dozen years, I have not seen and talked with more than a handful of the members of that congregation since I retired a year and a half ago.  It was like a reunion.  It didn’t take long to realize how much I miss the people who had become a part of my life during those years.

There is an intimacy that develops between pastor and people that is hard to describe. The ministry is not as much a job as it is a relationship.  Certainly there are lots of other professions that include at least as strong a relational element.  I can only speak to the ministry, more specifically, my experience of it.  Last evening I redicovered how connected I came to feel to all those folks, and how much I have missed getting to interact, to talk and listen and kid around with people I care about.

The combination of celebrating a reunion of sorts as well as being lifted spiritually by the music made for a very good night out.  Mary Ann was greeted and engaged by many, and she too enjoyed the music.

After two days holed up in the warm house, protected against the elements (snow and bitter cold), we both needed the time out, distracted by something other than the television.

The change in the medicine mentioned in last night’s post seemed to have the hoped for consequences.  There was a return to a more normal level of intestinal activity almost immediately on discontinuing the generic Mestinon.  Today has been a fairly normal day.  Mary Ann got up early, then took a two and a half hour nap.  We got out to lunch at BoBo’s, headed to the Honda dealership for a quick minor repair of the CD player in the van, and visited the home of a friend, one of Mary Ann’s closest friends from almost the very first day we arrived here nearly fourteen years ago.

Tonight Mary Ann had some pain that needed a nitroglycerin pill.  Those are always scary moments, although not at all uncommon for folks with heart blockages such as Mary Ann’s.  The pain subsided after taking the pill.  She woke up a few moments ago and needed a trip to the commode.  The Thursday people are back.  She wanted to know what the next family was going to do.  She insisted on closing the bedroom door while she used the commode so that they could not see her.  I hope she is able to get back to sleep, and that she has a restful 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.

 

December 10, 2009

Giving up on a New Medication

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If there were any indication that it would be worth the trouble to deal with a very annoying side effect, we might hang in there in hopes that the problem would eventually subside.  There is no clear evidence that the Pyridostigmine (brand name, Mestinon) has had any impact on Mary Ann’s fainting spells (syncope) due to the Orthostatic Hypotension (sudden drop in blood pressure when standing up).

It has only been a little over a week, but multiple trips to the bathroom each day with something close to diarrhea has worn us both out.  Most of the times there has been too little warning to get there in time.  Each medicine brings with it a cluster of side effects.  There are no perfect meds.  There is always a balancing act weighing the benefits against the problematic side effects.

Since the high blood pressure is such a serious problem, this is no small decision.  We will continue the Midodrine at the lower dosage we started just before adding the Pyridostigmine.  The Midodrine keeps her blood pressure at a higher level than is healthy for her in the long term, but it reduces the number and intensity of the fainting episodes.  We will accept the vulnerability to fainting spells that comes with the lower dose of Midodrine.  If those spells increase to the extent that they are stealing from us the capacity to have a reasonable quality of life in our time together, we will increase the dosage of the Midodrine to last summer’s level when the fainting had gotten out of hand.

The last two days have kept us inside for the most part due to bad weather.  It is at times like these that it becomes clear again that 24/7 with one another it tough to maintain.  The needs that come so very often become harder to deal with in a pleasant and patient way.

Gratefully, we have a treat tonight away from the house.  It will be a challenge, since the wind chill today has never gotten above zero.  The air temperature is heading to zero or a degree or two below by morning.  The treat is too good to pass up.  It is a Christmas Concert by the local Symphony.  What makes it such a treat is that a young woman who grew up in the congregation I served is singing at the concert.  Her Mom is on the Staff at that church.  She has the most beautiful voice I have ever heard. She is based in Boston now, and, on occasion is a vocal soloist for the Boston Pops. Check out her Blog for a real treat: http://kristenwatsonsoprano.blogspot.com/

Arranging to get to the concert was no small task. Mary Ann wanted to go, but I could not be sure she would not be able to go at the last minute.  Then came the prospect of getting there and at some point needing one or more trips to the bathroom.  Given the side effects of the new medicine she was taking, that was pretty likely.

While I do not yet know exactly how the evening will go, I realized how important it was to me to be able to experience the evening’s music.  I called the Agency, Home Instead, that we have used in the past.  The Companion Care Aide who came on Sunday mornings before I retired was available.  She committed to coming this evening to be with Mary Ann here at home if need be.  I called to buy a ticket to the concert for the Aide so that if Mary Ann could go she could be there with Mary Ann to help her to the bathroom.  To my surprise, a complimentary ticked now awaits us if we need it.

Enough for now.  Tomorrow’s post will include a reflection on the evening.

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

 

December 9, 2009

Dental Hygiene

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In the past, Mary Ann would do almost anything to avoid going to the dentist.  Dr. Ron when we were in Oklahoma City and Dr. Bob here have had a gentleness that won her over.  She goes four times a year now, without balking.

Four times a year may seem more often than necessary.  During the years we had dental insurance, it only paid for two of the four times each year.  Why four?  Two reasons: 1. lack of manual dexterity; 2. lack of adequate caregiving.  This is among the many things of which I am not proud.  I just can’t bring myself to do the mouth care for Mary Ann that she cannot do herself.  I have no excuse.  I do a reasonable job of a number of other things, but not that.  Going to the Dental Hygienist four times a year helps compensate for the lack of good care at home.

As is so often the case, medication that does much good in one area of health care can create problems in another area.  The combination of Plavix and Aspirin helps protect against another stroke as bits of plaque can break loose from the lesion on the wall of one of Mary Ann’s carotid arteries.  That combination of meds thins her blood to the extent that by the time the Dental Hygienist is done, there is much bleeding.

After each cleaning of her teeth, we put a Chux (absorbent pad lined with plastic) on her pillow so that the blood from her gums will not stain the bedding.  We learned to do that the hard way, as is so with most of the things we have learned over the years.

There was a point at which we were looking at multple thousands of dollars in potential work on her teeth.  Dr. Bob has managed to keep her mouth in pretty good shape without doing major work.  The prospect of many hours in the dentist chair with the vacillations between stiffness and involuntary movements did not make major dental work an acceptable option.  There were a couple of extractions along the line.  Surprisingly, Mary Ann found the extractions easier than having crowns done.  She was surprised at how fast she was in and out of the chair when the extractions were done.  She had no problems associated with those procedures.

Actually, the dental issues that come with Parkinson’s are seldom mentioned.  We have tried a number of electric toothbrushes.  Mary Ann has a very small mouth providing little room for normal sized brushes.  We have often gotten children’s toothbrushes.  Even the smallest head for an electric brush does not seem to work for her. The manual dexterity needed for brushing teeth is just not there.

Along with many other diseases, it is often problems that are not directly caused by the disease process itself that come to be the most troubling as time goes by.  They are things that are not symptoms of the disease but rather consequences of its long time presence.  As an example, I am watching the skin on the underside of Mary Ann’s forearms.  She spends most of her days in the transfer chair, with her arms resting on the arms of the chair.  I am watching to be sure that the skin under her arms does not begin to break down.  The impact on her dexterity and spatial judgment affects the ease of eating and drinking, making her vulnerable to weight loss and dehydration.  Our Cardiologist feels that the heart issues were a result of the intense dyskinetic movements that are a side effect of the primary Parkinson’s Medication after many years of taking it.

When a person becomes a Caregiver, it is not enough to listen to and read about the disease itself and its symptoms.  It is interacting with others, in support groups, online communities, talking with other Caregivers, reading what has been written by people who have either had the disease or cared for someone with the disease that provides the full story.

I had the advantage of being in a profession that took me into hospital rooms often many times a week. Folks made a point of sharing their medical problems with me as I ministered to them.  As I looked and listened, I learned much of what has helped me tune in to Mary Ann’s problems.  I learned how to talk with and listen to the medical professionals, making it easier to ask the right questions and understand the answers.

For now, I just hope the gums heal and the bleeding subsides.  It is surprising how helpful it is to use a cold substance to ease mouth discomfort after a visit to the dentist.  A chocolate shake from Sonic did the trick this time.  Did you know that Sonic just switched to using real ice cream in their dessert specialties (shakes and sundaes and blasts)?  Does that news leave you also wondering what it was they used to make those treats before they switched to real ice cream?

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

 

December 7, 2009

Losing Ground or Side Effects?

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Mary Ann has been noticeably weaker lately.  Of course, we have been trying to regain ground after what was lost in the three day hospital stay.  It seems as if the last few days have taken us the wrong direction.

The question is, what is the cause of this latest decline, albeit a comparatively small decline.  Is it the result of cutting back on the Midodrine and adding the Mestinon to her medication regimen a few days ago?  Check the last few posts on this blog for an explanation of what those meds do and why she is taking them.

One of the folks in the online Caregiver Spouses group mentioned weakness as a potential side effect of the Mestinon.  I am trying to get more information on that possibility.

Another side effect of the Mestinon is diarrhea.  There have been quite a number of trips to the bathroom that might be caused by the medicine.  The information sheet from the pharmacy suggests that this and other potential side effects may subside after a time.  I am hoping that her intestines will settle, so that she can continue the medicine.  It is not certain yet that the new medicine is having the sought for impact on the problem.

If we have simply lost ground in the battle against the Parkinson’s Disease itself, the Parkinson’s Disease Dementia (a Lewy Body Dementia) and the resulting Autonomic Nervous System dysfunctions, we will handle it and incorporate it into a new version of normal.  If, as the timing suggests, the medications are mostly the cause of the decline, we can do some more tweaking, adding, subtracting, or whatever has the potential of helping us regain lost ground.

For now, I’m tired. She seems to be sleeping.  I think I will try that out too.

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

 

December 6, 2009

Medicine Adjustments and Online Support

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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It is just too soon to tell.  Mary Ann is now taking two medicines to help control the fainting due to low blood pressure when standing (Orthostatic Hypotension).  One is the standard med prescribed to control the bouts with fainting, Midodrine.  The second is a medicine prescribed off-label for helping control the BP.

I just read a post on the online of Spouse Caregivers of those with Lewy Body Dementia.  That post had specifics about their larger dose of the new med.  I have been thinking lately just how helpful it has been to be a part of that online group.

The group is a place where those who are in the throes of very difficult caregiving can vent without judgment.  In fact the opposite of judgment comes.  There are words of acceptance, affirmation of the validity of the feelings of those venting. Everyone in the group understands the crazy ups and downs that come with this disease.

Reading the many hundreds of posts over the last year or two has helped me handle things that might have frustrated me more had I not known what to expect.  I knew not only from past experience but from the group that the aftermath of the hospital stay might be a problem.

We can ask one another how her/his Loved One reacted to a particular medicine or dosage of that med.  Even alternative medications can be discovered in the posts.  There are some who see a particular doctor at the Mayo Clinic who specializes in Lewy Body Dementia.

We can talk with one another about waste management issues without having any concern for speaking in an indelicate way.  There are things that can be shared there that would not be appropriate in a blog like this.  We can talk in ways that might scare those who were not going through this particular challenge.

One thing I have gained by reading those online posts is perspective on Mary Ann’s and my situation.  The struggles of some in the group are beyond imagination.   We are among those who have been dealing with Parkinson’s the longest, but others have been dealing with the dementia much longer than we have.  Not all the spouses have Parkinson’s, but all have some form of Lewy Body Dementia or a related diagnosis.  For some the dementia has reached the last stages, where we are in the mid-range of the usual progression of the disease.  With that said, the truth is, the disesase vacillates so dramatically, that most of us have seen earlier and later stages of the disease in our Loved One’s at various times – with no warning that a change for the better or for the worse was coming.

With the perspective of the reading those posts, I celebrate how much we are still able to do, the quality of life still available to us.

Mary Ann did reasonably well today.  We slept a little later this morning, a good thing for both of us.  The morning routine is pretty time consuming, leaving too short a time to allow us to participate in a morning filled with activity at church, including a Pancake Breakfast.  We did benefit from some leftovers brought over early in the afternoon.  When she was up in the morning before her nap, she was not at her best.  There were many times that she had her eyes tightly shut as we tried to walk to and from the bathroom.

Mary Ann actually ended up in bed late in the morning for a couple of hours of napping.  After eating some of the leftovers, we went out in the car for a while, ending up with ice cream.  Our first choice for ice cream this afternoon has gone out of business, Maggie Moo’s.  The format is the same as Coldstone Creamery, only with much better quality ice cream.  We ended up at Sonic.

She was pretty alert this afternoon, and headed to bed sometime around 7pm or 7:30pm.  She has been a little restless, but as always, I am hoping for a restful night for both of us.

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

 

December 1, 2009

Sleepless Night — Domestic Duty Day

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

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

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

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

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

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

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

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

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

As always, we will see what tomorrow brings.

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

 

November 30, 2009

“I’m Disoriented”

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I just went back into the bedroom for one of very many times so far this evening to check on her.  When I asked her what was causing her to be so restless, she answered, “I’m disoriented.”

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

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

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

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

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

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

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

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

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

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November 29, 2009

More from Cardiologist

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , |
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There are a couple more of observations on Mary Ann’s appointment with the Cardiologist, Dr. M, on Friday that have come to mind today.  They were comments that he made may be of interest to other Caregivers and Spouses.  I mentioned them in passing in last evening’s post, but they seem to me to warrant more reflection.

As I mentioned in last night’s post, I had brought some information from the Internet on a medication that seems to offer a an option for keeping Mary Ann’s blood pressure up when she is standing, to keep from fainting, without raising it when she is lying down, the time it is already too high.

I had brought the information to his office earlier in the week to allow time for him to look it over.  He didn’t see it until he studied the chart before coming into the Examination Room.  He did take time to read what I had brought.  When he came in he said that he thought the medicine sounded very appropriate.  In fact, he indicated that he appreciated the information and would consider using for others when the need arose.

He added that he was not at all uncomfortable with patients bringing in information.  He did not perceive it as a threat.  Not only was I grateful to hear that, but it impressed me as an attitude that any of us, Caregivers or patients, should look for in a doctor.  Dr. M is confident enough in his role, that he is not afraid to deal with any sort of question or suggestion.  He will answer the question if he can and tell us if he can’t.  He will take suggestions when they are good ones, and explain why if they are not good suggestions.

I have the advantage of being in an online group of folks who have all had years of experience dealing with Lewy Body Dementia and often Parkinsonism if not Parkinson’s Disease itself.  The thoughts and ideas and suggestions there are very helpful since they have been tested in real world situations.  One thing may work for one person and not work for another, so the suggestions can only be just that, suggestions, when taking the information to the doctor.  Bringing an arrogant attitude to a doctor’s appointment is sure to produce an unpleasant result.  I suspect that doctors feel the same way about arrogant Patients and Caregivers as Caregivers and Patients think about arrogant doctors.

Another conversation the Cardiologist had with us was triggered by my asking if the Congestive Heart Failure that took us to the hospital actually demanded a hospital stay.  I told him about the tough time we have had since the hospitalization.  He suggested that if we come again, we ask if it would be possible to monitor her situation for a few hours rather than admitting her right away and starting a regimen of medicine administered intravenously. Again, if we explain our reason for asking rather than simply being demanding, it might impact the doctor’s decision.

Dr. M made the observation that doctors factor in their assessment of the Caregiver or Patient’s wishes concerning whether or not they want to be admitted.  I inferred from what he said that there is a sensitivity about whether or not Caregivers and Patients feel able to handle the situation at home, when deciding whether or not to admit the Patient to the hospital.

We have a pretty good system here at home for dealing with Mary Ann’s problems.  If (when) we end up in the Emergency Room again, we will evaluate carefully the value of being treated at the hospital against the toll a hospital takes on her ability to function.

In Mary Ann’s case, that might have meant getting the shot of Lasix and checking the Cardiac Enzymes for a few hours to see if they stayed the same or declined.  While sometimes I feel pretty overwhelmed by what is already needed to give the care that is necessary, I think we would even be able to deal with IV meds at home, as long as a nurse put the IV in, and a nurse would be on call in case it got pulled out and needed to be inserted again.  It is too bad that our system of medical care does not make more allowances for care to be given at home.   It is easier on the patient (more rest) and it would seem to be less costly.

The day was quiet.  PBS had a number of specials today with Celtic music.  I told Mary Ann that I wanted to take charge of the television today and watch them.  As I have metioned before, in our division of duties, she is the boss of the TV remote control.  She stayed awake to listen to the music with me.  She ate pretty well.  She has been a little restless tonight.  I hope she settles in for the night soon.

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

 

November 28, 2009

Cardiologist’s Analysis Helps

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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In forty years of calling on the sick, I can’t tell you how many times I heard from people who had gone through a surgery after they had recuperated, “I didn’t know how bad I felt before I had the surgery until now, now that I feel good again.”  I don’t think I realized just how heavy the weight was that I felt, thinking Mary Ann was declining at a faster and faster pace.

I can’t know how long the feeling will last since this is such a roller coaster ride we are on, but for the moment, it feels as if a deep and heavy sadness has been lifted.   Like a little child, I tend to act out when I am struggling with something.  I act out by getting grumpy.  I make no promises to anyone that I will now be nicer for a while, but there is a profound sense of relief.

Our Cardiologist, Dr. M, was a parishioner for the last dozen years of my ministry.  We have come to appreciate him very much.  He combines a lot of traits that a patient looks for in his/her doctor.  He takes the time to listen well.  Not only that, but he takes what the Patient and Caregiver have said into account when making decisions.  He is decisive in a way that respects those whose lives are impacted by those decisions.

He has made clear that he is not in the business of predicting the future and cannot answer the “how long” questions.  What he will do is disclose what he knows, analyze it and make a logical assessment of the situation.  While I am always looking for something that help clarify where we are on our journey, there simply are not definitive answers to my questions.

Today, I took an approach that allowed Dr. M to analyze the data with me and compare where we are to where we were eight months ago (the last round of tests).  He also looked back farther so that we could get a sense of the trajectory we are on, at least in terms of Mary Ann’s heart and kidneys.  The Neurologist is the one to ask about the Parkinson’s and Parkinson’s Disease Dementia.  The heart issues in particular provide the most concern in terms of longevity.

Dr M’s look at some key indicators seemed to reveal, that while Mary Ann’s heart and kidney health has declined, in most ways she has been moving back and forth along a pretty level trajectory.  Her numbers have been worse at times in the past than they are now.  They also have been better than they are now.

The conclusion seems to be that Mary Ann is fairly stable, not on a trajectory that is taking her quickly toward free fall.  Mary Ann and I are fully aware that something precipitous could happen, but the truth is, that is so for all of us.  The Parkinson’s itself has been moving very slowly.  There are not likely to be dramatic changes in its progress.  The Parkinson’s Disease Dementia, is another matter.  It is very unpredictable.  It changes in fits and starts and can turn on a dime in a new direction or return to a better place thought never to be seen again.  Other than trying to control the Autonomic malfunctions to the degree we can, we have only the Exelon patch to help with cognitive issues.

As to her heart and kidneys, it is the high blood pressure that is the enemy.  Today Dr. M responded favorably to my suggestion that we consider the addition of  Mestinon to Mary Ann’s medication regimen.  That drug has the potential of helping control the fainting by raising her BP only when she stands up, the time it drops thereby precipitating a fainting episode.  It is an off-label use of the drug, but there are no major concerns that militate against trying it.  It does not conflict with anything she is currently using.

My intention is to cut in half the dosage of the Midodrine (okay with Dr. M) for a few days, then add the Mestinon. It is always wise to change only one med’s dosage at a time so that any problematic changes that might occur will be easier to trace to the source.  I will try to take her BP as often as possible and ask our Parish Nurse if she would stop by to check it also. The goal is to use as little Midodrine as possible since it raises BP all the time, not just when standing.  BP is highest when lying down, since it does not have to fight gravity.

The information received today through Dr. M’s analysis helps in a couple of ways.  Both Mary Ann and I perceived what he said in a positive way.  I feel a sense of relief that revealed just how down I had felt about her perceived decline.  We understand her to be pretty stable and on a fairly flat trajectory in the progression of the heart and kidney problems.  Another way that we are helped by having more clarity on where we are in this journey, is that we can use our ability to deal with the challenges more efficiently.  We can’t afford wasting our days fighting things we cannot change.   We can’t afford to waste our energy because we are in denial about the realities of our situation.  As I have said before, a certain amount of well-placed denial can be very helpful in living through our days as meaningfully as possible.  However, we need to know what to accept and what to fight.  We don’t want to accept something when we should be fighting it, nor do we want to fight something that it is time to accept.  Today helped us better discern what to fight and what to accept.

At least tonight, my assessment is that I had moved toward acceptance of a more rapid decline than is actually happening.  I feel more bold now about stretching the limits of what we are doing.  I will, of course, not be foolish about tackling things that put us at an unhealthy risk.  A certain amount of risk, however, is necessary to stay alive and well.  After so many years of practice, we have ways of dealing with most of the problems that arise when things do not go well.  If we try something and it goes badly, we will deal with it and try something else.

I guess it has been a good day!

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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