December 5, 2009

Outing Today and Caregiver’s Dilemma

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I am sure there are a variety of media folks trying to get a clear handle on the reasons for the continued success of the movie “The Blind Side.”  We saw it today.  It is the true story of an essentially homeless teenager, accepted into a family, finding his way to success on the football field.  Thematically, it seems to me like the story of Susan Boyle who has become a metaphor for a nobody being discovered to be a somebody.  It touches the longings in most of us to find fulfillment, to come into our own in a way that is clearly visible to others and, more importantly, to ourselves. I suppose it is the same reason that “The Man from Snowy River” has always struck a chord in me every one of the fifteen or so times I watched it in former years.

I am not really sure how Mary Ann felt about it.  Her comment at the end was, “Did we end up in the wrong movie again?”  The last time we went to a movie, she had gotten in her mind that there was another one we were going to see.  When I asked her what movie she thought we were going to, she referred to an interview this morning on the television with Robert DeNiro about a movie he is in.  I did not see that interview.  In both cases, I had only talked about going to the movie we saw, and had not at any point mentioned the other.  At best, communication is a difficult thing.  Since Mary Ann is not verbal, it is hard to know what she is thinking.  I talk enough that she needs to tune it out.  As a result, I can say one thing, and she can have something completely different in her mind.  It is hard to know how many of the miscues are simple communication problems and how many are precipitated by the dementia that has begun to show its face on occasion.

On another note, there is a dilemma emerging that impacts my role as a Caregiver.  In a matter of about 48 hours, I received three overtures that would ultimately involve commitments of time.  Committing time to something other than caring for Mary Ann is no small matter.  I have seen just how stressful it is to have time pressure enter the picture when Mary Ann’s needs come without warning, often demanding immediate attention.  I can’t count the times I have had to get off the phone or at least excuse myself for a moment, when Mary Ann popped up and headed toward the bathroom.

It became clear very soon after I retired, that I could not count on being able to keep commitments if I made them.  Every commitment had to have an easy way out, in case Mary Ann’s situation demanded my attention.   Even tasks that don’t have appointments to keep pretty tough to accomplish, since the tasks that come with the caregiving role, make it tough to get a long enough block of time free to concentrate on anything else.  Those who volunteer to spend time with Mary Ann have busy lives of their own.  There are not a large number available to cover multiple times for meetings or whatever.  The cost of using paid Companion Care from the Agency we sometimes use prohibits making many commitments.

If I add commitments that use up all the time covered with Volunteers, I may as well go back to work.  One reason I retired was that it was too hard to move between working and caregiving wtihout time for rest and renewal.

With all that said, there must be something else going on in my thinking, something of which I am not fully aware that has caused me not to immediately decline the overtures.  I have accepted one.  It allows a great deal of flexibility and is likely to be very satisfying.  It is simply providing a sounding board for a friend from a former time.  While I may decline the other overtures, I am actually considering them.  I know too little about them yet to actually make a decision.

I suspect that part of the reason I have not dismissed the overtures out of hand, is my need to feel useful outside of my caregiving duties.  It is challenging to realign my thinking and feeling to be able to feel fulfilled and valuable without external validation.  At a spiritual and intellectual level, I can find fulfillment without affirmation.  My insides, however, are not so mature and selfless. At the very least, it is nice to have been asked.

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 4, 2009

Eating Out Remains Difficult

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The meal was good.  The eating was not.  Mary Ann got some food eaten, but not very much.  She would let me cut the meat and break the dessert’s crust into bite-sized pieces, but, again, she would not let me help her by feeding the food to her

This public place was tonight’s Parkinson’s Support Group Holiday meal.  Since everyone there is either a Caregiver or the one with Parkinson’s, I hoped Mary Ann might be more willing to allow me to help.  Not so.  The meal was catered by folks who do a nice job on the food.  They also had extra servers, more than would normally be needed when using a serving line.  The extra servers helped those of us who were trying to carry plates for two and those whose dexterity is limited.

We sat across from former parishioners that we have known for many years.  He has had Parkinson’s much longer than Mary Ann.  We enjoyed the various conversations. I guess to be more accurate, i enjoyed them.  Having retired from a profession filled with hours of converations and interactions with others, retirement has put a crimp in my opportunities to talk with folks.  As a result, when any opportunity arises, it is hard for me to shut up!

While I always tested very well in the quanitative portion of the standardized tests, the verbal scores were not quite as high.  That seems pretty odd to me since my life has always been about words.  I always loved words.  I used them to get out of fights with bullies (it helped that when I was in elementary school I was among the tallest and strongest of the kids  — I am still the same height I was in the Sixth or Seventh Grade).  I loved learning to use big words, always making sure I used them correctly.  Some people express their sadness with tears, their anger with violent actions, their frustrations by acting out, their happiness by shouting for joy, I talk.  I think and analyze and process and then frame the feelings with large quantities of words that help dissipate the pent up nervous energy created by the feelings.

At the same time, I love solitude.  I can spend hours just soaking in everything about the moment and the space I am in and the thoughts that fill my mind, often bumping up against one another.  I love the periodic retreats that provide almost three full days of utter solitude, walking, watching the wildlife, gazing at the clouds, smelling the scents, reading, thinking, journaling.

I guess what precipitated the above diversion from Mary Ann’s challenges  to my love for words is the fact that I need the time out with others more than Mary Ann does.  It is part of my therapy.  I am usually pretty ambivalent when outings are approaching, wanting to stay home to avoid the hassles associated with going out.  But when I get to the gathering, I thoroughly enjoy the interactions and conversations.

Back to Mary Ann’s struggles with eating.  When I asked Mary Ann about lunch today, she said she wanted BoBo’s for lunch. The Food Network’s Diners, Drive-ins and Dives did a special on BoBo’s.  We didn’t really have time to go into the diner to eat (it is the size of a postage stamp), so we got take-out from a drive-in stall.  I have to admit that it was a bit of a relief that we did not have time to go in.  One reason is that I wanted to eat the food we already have in the fridge (my frugal streak).  The second reason is that I have a hard time watching Mary Ann eat when the soft fish sandwich with tartar sauce is squishing through her fingers, dropping on the table, her clothes and the floor.  There, I said it!  I am ashamed to admit it.  Here she is struggling to deal with all she has been through, just trying to enjoy food that brings her pleasure, and I am so petty as to let a little messiness disturb me.

If we had had time, we would have gone into the diner to eat.  At least I usually don’t let my aversion to the messiness keep me from taking her out to whatever restaurant she chooses.  I am trying here to salvage a little positive self-image after admitting to such pettiness!

Mary Ann slept well last night — good for both of us.  She went to bed a little late tonight.  Let’s hope for a night filled with sleep!

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 3, 2009

Frustrating Meal Out

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Mary Ann liked the chili.  At first she could not negotiate the spoon well enough to get anything into her mouth.  For whatever reason, her compromised spatial awareness (from the stroke or the Lewy Body Dementia or both) makes it difficult for her to use the spoon as intended.  Most often it gets turned over so that all she gets is what sticks to the back of the spoon.  It works for ice cream and sticky foods, but not for liquids. Sometimes she can get the spoon turned upright, but she can’t keep it level enough for a liquid to stay in it long enough to make it into her mouth.

After I crumbled lots of saltine crackers into her chili, soaking up the liquid, she was able to get a portion of it eaten.  She tried to cut off a piece of the freshly baked, very tasty, cinnamon roll so that she could eat that.  I saw her struggling with it and used the spoon to divide it into a number of pieces that she could pick them with her fingers.

We were sitting at a round table eating with former parishioners who pretty much took for granted Mary Ann’s struggles with eating.  They knew not to pay too much attention or offer to help, thereby making Mary Ann more uncomfortable.  The family at that table with us had lost two members, the Daughter and Wife of one, and the Mother and Sister of the other, both at a comparatively young age to a form of Alzheimer’s Dementia.

I quietly offered to assist Mary Ann by feeding her, but as expected, she refused the help.  She was clearly getting very frustrated, more so than she has in the past.  Since this was a church dinner provided by the Junior Youth and their Parents, there was not a menu with various items to choose from.  There was no option of picking something that would be easy for her to eat.

It is clear that we will need to check the menu for the next dinners at church to be sure there is something there that Mary Ann will be able to eat without much help.  Tomorrow evening is the Parkinson’s Support Group dinner.  While that group has other members who are debilitated, at the meetings, Mary Ann is usually by far the most limited in physical ability.  I hope that she is able to handle the meal.

What is at stake here is the potential loss of one of our main activities outside of the house.  Mary Ann has done pretty well at not being deterred from going out by the difficulty she has eating.  Her frustration this evening was intense enough that it could negatively reinforce the experience of eating out to the extent that she will just refuse to go.  She has always wanted to go out to eat.  We would eat every meal out if I would acquiesce to her wishes on the matter. As eating in public becomes more of a problem for her, she is beginning to let go of the need to go out.  While I am glad for the money we save by eating at home, we need not to cloister ourselves in the house.

Mary Ann napped for a couple of hours this afternoon and went to bed fairly early also.  She commented on the fact that is was a long day, the Bath Aide at 9am this morning, the Service and dinner this evening. She slept fairly well last night, and at the moment, she seems to be settled in.  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.

 

December 2, 2009

Social Butterflies are Well-Fed

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Yes, the parking was no picnic.  We ended up on the fifth level of the parking garage.  It was good that it was a warm and sunny day since that is the top level, uncovered.  The elevator took us to street level, where there were curbs between us and our destination.  Curbs make it virtually impossible for wheel chair travel.  There was access to the street available to us by heading away from our destination for a relatively short distance.  Then we had to head out into the street for about a half block to find a spot where the curb had been lowered for wheelchair access.  The ramp to the second floor entrance to the Pozez Education building was a long switchback with a pretty steep incline.

On the poaitive side, that climb provided some much needed exercise.  It was the annual Healthwise 55 Holiday Brunch.  This year it was extended to a fourth sitting beginning at 11:30am.   We always chuckle about the menu for the Healthwise 55 Brunch. It is an all-you-can-eat buffet.  There are scrambled eggs, sausage links, bacon, biscuits and gravy, doughnuts, muffins and a bowl of fruit.  I concluded that taking a cup of fruit freed me to have two helpings of everything else without guilt.

Mary Ann did pretty well at eating the eggs and bacon and fruit.  Since she is not ready to let me feed her in public, it is good that she was able to manage eating on her own.  She ate a couple of helpings of the eggs and bacon. It did surprise me that when we got home and settled, she popped up right away and headed toward the kitchen.  She wanted one of the two pieces of pecan pie she was convinced we had.  We had long since finished the pumkin pie from Thanksgiving.  Other than a couple of pieces of pecan pie that Jeanne had brought when we lunched together at our house ten or twelve days ago, there has been no pecan pie in the house.

This will be a food-filled week.  Yesterday, buddy Jimmy took me out for the usual monthly lunch.  I had a single order gourmet Italian sweet sausage and red pepper pizza that was the equivalent of a full-sized small pizza.  Then there were the bread sticks and the salad.  I brought home enough of the pizza for Mary Ann and I both to have some for supper.

Tomorrow the Liturgical Season of Advent begins with evening worship and a supper.  More social activity.  Then on Thursday comes the Parkinson’s Disease Support Group catered Holiday meal.  More social activity.  While eating in public has the potential of being awkward, embarrassing, uncomfortable, staying home will not make those problems go away.  By going out, we both become less sensitive to those externals.

Mary Ann did nap for a couple of hours this afternoon.  As always, I hope for both her sake and mine, that it is a restful night.

Addendum: Our Daughter Lisa had surgery on Monday.  The surgery went well.  She went home today and an is in recuperation mode.

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. 

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 29, 2009

More from Cardiologist

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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

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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.

 

November 27, 2009

Thanksgiving Day Went Well!

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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Maybe this will be our new Thanksgiving tradition, barbequed ribs, pork and brisket with stuffing on the side.  The meal was tasty, lots of food, great desserts, both pumpkin pie and Baskin & Robbins Grasshopper Pie for Granddaughter Chloe’s birthday treat.

Mary Ann seemed pretty tired today, especially in the morning before the kids came.  She did not talk much during the day, but Son, Micah, got her to laugh a few times. He has a way of connecting with her that is fun to watch.

Chloe is, of course, a breath of fresh air.  She is warm and engaging always making clear to both her Grandma and her Grandpa that we are loved.  She is such a sweety.

Becky brings a brightness and positive energy with her that lifts us up.  She treats us with love and respect, always thoughtful of our unique circumstances.  She always provides relief from the cleanup task by insisting on doing it for us.  That gift does not come from some automatic domestic role expectation, it is an intentional and thoughtful act of generosity, offering me some respite from the task.

Chloe and I did a little bird-feeding together.  Micah helped with a clean up of some of the Cypress needles that had fallen into the lower area of the pondless waterfall installed last summer.  I described to them plans for a possible remodel to the back of the house that would provide additional indoor space with lots of glass so that we could enjoy the waterfall and the birds more than we can now, since there is no easily accessible view of the water fall from inside the house.  No decision is made on the project, but the decision-making process is in motion.

Later in the afternoon, Micah shared something he had been thinking about.  He has plenty of access to information on my side of the family in terms of health history.  My siblings are all living, and over the years he has had a fair amount of contact given the geography with cousins.

Micah noted that he has very little knowledge of his Mom’s side of the family.  Only Mary Ann’s Mother was still living when Lisa and Micah were born.  Two of her three brothers died, one of Lung Cancer and the other of Acute Leukemia, when Micah was almost too young to remember.  The third brother chose to alienate himself completely from the family at the death of their Mother.  It is pretty much too painful for Mary Ann even to talk about.

As a result, Micah did not have a chance to get to know her family other than her Mother.  The same is so for Lisa, although, since she is three and a half years older than Micah, she probably has a few more memories of her Mom’s brothers.

What developed from the conversation was the idea of our traveling back to Northern Illinois to visit with Mary Ann’s two deceased brothers’ families to hear stories about them that will help fill in that void of knowledge.  The email has gone out to see if there is a possibility of having a family gathering to reminisce and share stories.

After a nice time on the phone with our Daughter Lisa, who shares her brother’s interest in connecting with their Mom’s family, Mary Ann has settled into bed, and I have been thinking about Mary Ann’s family connections.  She loves and is loved by her family.  The death of her Father, a few weeks after we were married, the deaths of her two brothers (each one at the age of 51), being hurt so deeply by her other brother as that relationship was severed, and finally the death of her Mother, left Mary Ann feeling very much alone.

Her Sisters-in-Law and her Nieces and Nephews seem to love and respect Aunt Mary very much.  She is not only separated from them by geography (a ten or twelve hour drive demanding two days of travel for us to get there).  She cannot talk audibly on the phone, or react quickly enough to maintain a conversation on the phone.  Sometimes she can’t get any words at all to come out.  She hasn’t been able to write legibly for the last few years.  She cannot negotiate a computer keyboard or control a computer mouse.  It is frustrating to her and to those who long to interact with her.

I hope something materializes that will allow our children a window into Mary Ann’s family, and a chance for Mary Ann to feel part of a family of her very own.

Tomorrow afternoon is the first meeting with our Cardiologist after the trip to the hospital for Congestive Heart Failure three weeks ago.  He was out of town at the time of the hospital stay.  I delivered to his office a letter and attachment requesting consideration of a change in meds that might help with the fainting while not raising her blood pressure when lying down.  I intend to report on that visit in tomorrow evening’s post.

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 26, 2009

Can we cook or what?

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , |
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There were dirty pans and bowls and silverware everywhere!! How on earth did I get myself into this! We are not talking about anything that took so much as a shred of culinary skill. Stuffing and Broccoli salad are about as uncomplicated as food preparation can get, but it seemed like a monumental accomplishment to this very reluctant cook.

The plan for Thanksgiving seemed so simple.  There would be nothing resembling cooking.  Ribs, chopped pork and brisket along with a side dish would be picked up from the ToGo counter at the newly opened Famous Dave’s Barbecue nearby.  Our Son, Daughter-in-Law and Granddaughter are coming from Kansas City, an hour away, to join us for a while on Thanksgiving.  We will celebrate Granddaughter Chloe’s eleventh birthday at the same time.  The actual day was a week ago.

When we were at the grocery two days ago getting some odds and ends, Mary Ann’s feet hit the floor bringing the wheelchair to an immediate stop.  By the way, the pain that translates into my forearm (I push the chair with one hand and pull the grocery cart with the other) whenever those rubber soles so much as touch the tile floor is memorable.  The chair stopped in front of the bags of Pepperidge Farm seasoned stuffing 0n display.

I reminded Mary Ann what the plans for Thanksgiving, did not include turkey and trimmings this year.  We went on to get some other food items.  For some reason we had to double back and pass by the same display.  Those feet hit the floor again. We will have ribs and dressing tomorrow.

She wanted dressing, so we will have dressing.  At times like this, Mary Ann just moves back to a time when she was still cooking and needs to prepare food as she did before or early in the Parkinson’s.   Now, I am the one who needs to bring her intentions into a reality.  With Mary Ann in the kitchen, I made the dressing.  There were onions to be chopped along with celery.  They were cooked in butter for a few minutes, followed by the addition of the Pepperidge Farm dressing and liquid (chicken broth in a box) to the pan.  Then an apple needed to be cut into small pieces,  pecans chopped, a few handfuls of raisins, dried Cranberries, cut up apricots and dried blueberries put in the measuring cup.  All of them were added, folded in and the final product was put in baking dish, ready to for the oven tomorrow.

Then came the Broccoli salad prep.  Out of the blue yesterday afternoon, Mary Ann decided we needed to make broccoli salad.  After the stuffing was in the fridge, the broccoli heads needed to be transformed into very small pieces of broccoli.  Another onion, this time chopped into very tiny pieces, more raisins, dried cranberries and dried blueberries were all mixed together.  We happened to have in the freezer the requisite bacon bits to mix in also.  A bottle of salad dressing was added to the mixture, which then went into the fridge to marinate.  Tomorrow a cup of sunflower seeds will be tossed in just before serving.

At this point, with stuffing, broccoli salad, Cranberry celebration from the deli counter at the grocery, a Copper Oven pumpkin pie and a second pumpkin pie from Mary, along with Cool Whip for the pie, we may as well have gotten a smoked turkey, made mashed potatoes and had a traditional Thanksgiving meal. As it is, it will be a very interesting Thanksgiving meal.

I was, of course, ambivalent about tackling even those simply made dishes.  My first reaction to Mary Ann’s suggestions included a twinge of resentment that I would be the one required to do that actual preparation.  I realized it would be a good thing to do that food preparation because Mary Ann would be pleased having the items at the table as the food she brought to the meal.  It would give us some time during which we would both be focused on the preparation task.

Both food items are now prepared and in the fridge.  As the day wore on a supper meal also had to be prepared.  More onions, some bratwurst that had been browned, sliced apples and Bavarian style sauerkraut all cooked together to flavor one another served as supper.

I have no idea how it is possible to end up with so many dirty pans and utensils, cutting boards, bowls, measuring cups, and dishes — and these were simple dishes to make.

When the time came to decide what we would do about the evening Thanksgiving service tonight, Mary Ann had used up her day’s energy.  She was in bed before the Service would have concluded.  In years past we attended the Thanksgiving Day morning service, which was discontinued this year.  It was a smaller group, making it easier for us to negotiate, and it was at a time of day that was easier for us to manage.

Mary Ann did pretty well today.  There was no nap, but she is still having a little trouble settling.  Hopefully she will sleep most of the rest of the night. Tomorrow is a big 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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