March 15, 2010

Dr. House Diagnosis is an Odd Coincidence

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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No, I have not gone over the edge, relying on Dr. House for diagnostic input.  First of all, the character, Dr. House, is extremely annoying, especially to those of us who have encountered arrogant doctors.  Gratefully, other than one Hospitalist, we have been spared that problem in recent years.

Mary Ann loves watching the series, “House.”  We have seen the episodes so many times it is hard to stay in the room when they are on.  There was one yesterday that was far too close to home.  It was one that I don’t remember seeing before.  A character named Amber has been in a bus accident and ultimately dies at the end of the program.  She has died of Amantadine poisoning.

Amantadine is the drug we discontinued a couple of weeks ago and restarted about a week ago.  One reason I was reluctant to restart the Amantidine was a series of warnings to doctors about it in the info sheet that comes with it.  Amantidine is retained in the plasma (I believe) especially if kidney function is compromised.  Mary Ann’s kidney function is significantly reduced due to all the years of high blood pressure.  One warning to the doctor’s was that in elderly patients it is metabolized differently and needs to be reduced so as not to build up.  Mary Ann qualifies since her Body Mass Index has declined so much.

In the program, Amber died of Amantidine poisoning because her kidneys had been damaged in the accident.  Her body could not flush it out.  She was taking it for the flu.  The brand name of Amantidine is Symmetrel, a drug often prescribed to people with the flu to reduce its impact.

No, I am not concerned.  She has been taking it for years.  Yes, when I fax the Neurologist to get in Mary Ann’s chart that she has resumed the Amantidine, I will ask about the warnings given to doctors about it.  No, I will not start the fax with the words, “Dr. House says….”  I will in that fax explain that Mary Ann’s hands swelled and began to display contracturing.  I will explain that she ceased to be able to help with transfers, pretty much losing the abililty to stand.  I will mention that the daytime sleeping doubled in the number of days in a row that she slept.  All that began 36-48 hours after stopping the Amantidine.  Now that she has been on Amantidine for a week, the problems have diminished or returned to the level that preceded stopping the med.

The bad news is that so far the Amantidine does not seem to be doing again the very thing Mary Ann was taking it to do.  Those wavy movements that are apparent when Michael J. Fox is on television are called dyskinesias or dyskinetic movements.  They are caused by years of taking the basic med (brand name, Sinamet) that gives Parkinson’s patients the ability to move (and if a person has them, it reduces the tremors – fast shaking movements usually of a hand).

The Amantidine reduces the intensity of the dyskinesias.  They can be terrible.  There have been times in years past, when Mary Ann almost could not stay in a chair, arms and legs and body were twisting and turning so much.  More than once she has almost flown off the gurney in an ambulance or the Emergency Room.  She takes much less Sinamet now, and with the Amantidine those movements have been subdued.

Guess what?  Resuming the Amantadine has not brought back control of the dyskinesias.  Gratefully, she is not flying out of bed, but on occasion in the last week or so, I have had to click the seat belt on her transfer chair or wheel chair to keep her from slipping out.  It is an interesting challenge to try to help her put her jeans on when her legs are crossed and twisted, moving constantly.  Her muscles are very strong from years of those movements.  I have observed that trying to help her get dressed when the dyskinetic movements are going at full intensity is like trying to wrestle a Python.  No I have never wrestled a Python.

Dyskinesias are completely involuntary.  She cannot stop them.  Stess makes them worse, but just trying to relax will not make them go away.  I am not concerned about this development.  It is nothing new to us.  We just got spoiled when they were under better control.  Now that I realize what other problems the Amantidine seems to be helping control, I will not stop it just because it isn’t helping with the dyskinesias.

Two mornings ago Mary Ann fainted a number of times.  I tried to take her blood pressure, but when she is dyskinetic, it is just about impossible to take her BP.  The movements make noise in the stethoscope that confuses listening for the heart beat.  She fainted multiple times yesterday also.  I heard nothing through the stethoscope, no heartbeat at all, but since she was alive and well, there was, of course no panic.  She was fainting so much I had to lay her down in bed.  She napped for about three and a half hours.  When I did get her blood pressure after napping, it was 165 over 100.  It had been that high the day before when finally I could get it.

Following two mornings of so much fainting, I had decided to resume the Midodrine to raise her BP.  After getting the 165/100 later in both days, it seemed again to make no sense to be raising it higher.

Maybe if we need for me to get a part time job, I could help out at a Pharmacy.  That degree should be coming in the mail right after the MD, with specialties in Neurology and Cardiology, arrives.

On another note, instead of my usual visit to the lake this morning while Volunteer Elaine was with Mary Ann, I headed to church for the Baptism of Oliver, Grandchild to Don and Edie, good friends who have brought us food so often — Edie leads our Spiritual Formation Group.  Since the timing of the Sunday morning Volunteers allows them to attend the 8am Service, they arrive well after the 9:30am service has begin.  As a result I came in quietly in the middle of the service.

For the first time, the prayers included the public announcement that Mary Ann is now being served by Hospice.  At that moment, the fact that I was in church alone struck me.  I didn’t like it!  Afterward, I ended up at Don and Edie’s for a celebration with food.  I would normally have gone to such an event with Mary Ann.  I didn’t like being alone!

I have heard from those who have lost a spouse just how difficult it is to go places alone, places that the two had always gone to together.  Today, that awareness took on a new dimension.  On the positive side of that new level of awareness, I celebrate even more being together with Mary Ann all day long every day.  My gratitude for having retired when I did rather than waiting another year is even deeper.  Whether she is asleep or awake, lucid or not, I am glad she is here.

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.

 

March 14, 2010

When to Worry

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , |
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“The Doctor who treats himself has a fool for a patient.” Not only do some who read my posts show love and concern and words of compassion and support, some of you are also worried about how I am doing.  You may very well suspect that I am trying to treat myself spiritually and mentally, against which the above aphorism warns.

You may not change your mind after I have described what leads me to feel secure and healthy in the midst of dealing with so much over which I have no control.  I hope you catch sight of some of what keeps me grounded spiritually and mentally.  I will also share with you some things to watch for that might be symptomatic of losing my bearings.  What I will share is not just about me but anyone who is in a role like mine, or struggling in any way with things over which they have no control.

Last nights post was a window into the specifics of one of our challenges.  I have chosen to write in great detail what we are going through and my feelings about it.  I do so for a number of reasons.  One is that I think it is more interesting, and brings to life what we are experiencing in a way that is accessible to someone who doesn’t have direct experience with whatever it is.

I write in such detail the struggles we are going through and my feelings about them so that readers who are in this kind of role will be reassured that they are not alone in their frustrations.  Somehow it is a little easier to endure seemingly impossible situations when it is clear that there are others doing so.

I write in such detail, including feelings of helplessness as options seem to narrow and the boundary of the ability to cope comes into view. so that those who happen not have been there can catch sight of that place.  That goal is to encourage all of us to look each other with a level of compassion, realizing that the people we know, many of them, may be in the throes of some sort of personal battle, suffering in silence.

I am not silent.  One of the purposes of sharing all the gory details of our journey is that it helps me not to be silent.  I have been using all of you who read these purposes as a collective therapist.  You listen.  No one can go through another’s pain and experience it for them.  Each of us has to survive our own pain.  Many of us like doing so in a community.  You are my community.  The Volunteers are my community.  Friends and family are my community.  I am also part of your community.  One of the greatest joys in the ministry has been listening to and talking with others, maybe some of you, when you have been dealing with things over which you had no control.  I can only hope that the time we spent together helped.

When I write, I seek to be straight with you.  I have chosen, wisely or unwisely, to forgo any pretense that because I am a Pastor I am always pure and holy and strong and capable and wise and completely in control mentally and spiritually.  The tradition of which I am a part is about the Grace of God.  That means I believe that I am loved and forgiven just the way I come, ugliness and all.  I am not saddled with the hopeless task of becoming so wonderful and loving that I measure up to God’s expectations.  I need to be able to fail God and know that God will not fail me — even though it would be only fair for God to do so.  I don’t want a God that treats me with fairness.  I want a God who treats me with mercy.

Here is my assessment of how I am doing.  I think I am doing well.  I feel whole and full of life.  I hide very little from you as I write.  By doing so, it helps me see the reality of what we are going through here. It feels healthy to me to be able now to cry, to grieve, to express frustration, as well as describe the natural beauty that nurtures my spirit. I am free to feel the pain deeply because while it is very real, it does not have within it the power to destroy me.

Here is where the faith tradition of which I am a part frames my world view in specific terms.  I affirm that the One whose actions consummated the deal that has resulted in the Grace of God sustaining me and any who happen to recognize a need for it, has shown me how to live.  He loved people deeply, he knew how to party, he had compassion, he cried, he got angry, he got frustrated with others, he went off by himself to pray, he went to church, he felt pain, he felt overwhelmed, he cried out in desperation from the means of his execution, he faced death without pretense, went into it, through it all, and came out on the other side with life past any power to destroy it.

I feel utterly and completely secure in the love that surrounds me from the One who creates life in me every day, who has put his life on the line for me, whose Spirit nurtures my spirit.

In human terms, I have children and their spouses who listen to and support Mary Ann and me.  They will do anything in their power to be there for us.  I have Brothers and Sisters who care about us.  Every Wednesday morning four of us spend a couple of hours with Scripture and the reflections of others who have gone before us in the faith.  We talk about God’s participation in our lives moment by moment, day by day.  While not often enough, the interactions with friend John from Oklahoma have been exceedingly nurturing Spiritually.  At the moment he is leading a group on a mission trip to Guatemala.  Please keep him and his group in your prayers.  The times I spend in reading and meditation and solitude (deck time, listening to music, appreciating the beauty of nature) are pivotal in maintaining Spiritual and mental equilibrium.  The retreats to St. Francis of the Woods in Oklahoma are powerfully healing.

The online community of those caring for spouses with a form of Lewy Body Dementia has provided a place where complete understanding can be found.  There are many things that I would not say here in these posts that can be said openly in that group with utter and unconditional acceptance.  That group demystifies things that could have more power than they deserve. Reading those posts daily helps put our struggles in perspective.

Words are an important way for me to process what we are experiencing.  Using them in writing and in interaction with anyone unfortunate enough to ask how we are doing, provides a wonderful release.

Here is when to worry: when I stop writing and talking.  It will be time to worry when I no longer shower and wash my hair in the morning, get Mary Ann dressed and fed, make the beds and clean the commode, clean the kitchen counters, drink PT’s coffee and eat Baskin & Robbins ice cream (actually I should stop that last one, it would be healthier), feed the birds.  If I start telling everyone how perfectly I am doing, never sad or frustrated or out of control or grumpy or angry, always sweet and nice and wonderful, then it will be time to call 911 and have me institutionalized.

All of that being said, “The Doctor who treats himself has a fool for a patient.” I appreciate people asking the hard questions of me since I could be deluding myself into thinking I am doing better than I am.  When the Hospice Social Worker came, she asked very many pointed questions of both Mary Ann and me.  I felt I was being absolutely honest with her when I answered each question.  I recognize that there are still more difficult times coming.  I feel healthy spiritually and mentally now, and I expect to deal with what comes as it comes in ways that express fully what I am going through. I am on the pay as you go plan.  When I hurt, I will hurt and when I am wounded, I will feel the pain.  With that Grace of God as the power, healing will come.

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.

 

March 13, 2010

Blood Pressure Plummets

Posted by PeterT under Daily Challenges, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , |
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She was sitting up in the chair in front of the television.  Her head started jerking forward and back up.  Her arms fell to the sides of the transfer chair.  She was out.   She had not stood up, she was just sitting there when it happened.  Medical folks call it Syncope.  You and I call it fainting. passing out. 

Why did it happen?  Her blood pressure dropped until it was no longer high enough to fight the pull of gravity.  There was no longer enough blood pumping to adequately supply her brain. 

It didn’t just happen once, or twice, or three times.  I lost count.  It was probably five or six times, one right after the other.  It has happened before, but never that many times in a row.  Only two or three times before has it happened while sitting down, unless it was right after standing up or walking or trying to get up — not just sitting down.

There is no explanation of which I am aware as to why the blood pressure is too high sometimes and too low other times.  It has been high almost her entire adult life.  That is called Hypertension.  She also has Orthostatic Hypotension.  That means, when she stands up, sometimes the Autonomic Nervous System [ANS] does not trigger the smooth muscles surrounding the arteries quickly enough to constrict to compensate for the additional gravitational pull down on the blood in her circulatory system.  Read the side effects on very many of the common medications we take.  They warn that there may be dizziness when standing up while taking the med.  That dizziness is a moment of Orthostatic Hypotension, low blood pressure when standing up. 

It sometimes happens to folks who have had Parkinson’s Disease for a long time.  It very often happens to those who have a form of Dementia with Lewy Bodies.  Parkinson’s Disease Dementia is one of those forms.  Little bits of material called Lewy Bodies form on brain cells in the part of the brain that runs the Parasympathetic System of the ANS. 

What all that means is that there is an insidious process that makes life still more difficult to some who are already in a very tough battle.  I know what the explanations are for high and low blood pressure in Mary Ann’s circumstances.  What I don’t know, nor does anyone else, is why for many weeks it has hovered at a frighteningly high level with no fainting spells, and now it is running high at times during the day and plummeting at other times. 

She had fainted some earlier this morning when she was up and down, using the commode. When it happens there, I have to hold her up with my shoulder to keep her from slumping forward.   Then after maybe ten or fifteen minutes of multiple times fainting while sitting in her transfer chair in front of the television, the Hospice Aide Sonya arrived for her first time giving Mary Ann a shower, washing her hair and dressing her.   I thought there was not a chance that Sonya would be able to handle her, even with the new shower chair with arms. 

Mary Ann did not faint once during all the ups and downs of getting into the shower chair, transfering back to the transfer chair she sits in during the day.  Why not??  Why does she faint one time and not another.  This is such a nasty disease, refusing to submit to patterns that can be anticipated. 

Now comes the question, do I resume giving her the Midodrine, a medication that raises blood pressure?  Her heart and kidneys are being damaged by high blood pressure.  I will take her BP in the morning and decide what to do.  If it is exceedingly high, I will not give her the Midodrine.  If it is exceedingly low, I will.  Of course, it is not as simple as that.  If her BP is normal, what should I do?  Normal is not high enough to guard against moving too low when she stands.  It often changes from way too high when she first gets up to way too low in an hour. 

This is an old story heard many times by those who have reading these posts since I began writing this blog just about a year ago now.  You have heard me talk about this many times before.  Here it is again.  It no longer scares me.  It just makes it harder to deal with Mary Ann’s penchant for hopping up and heading off, especially when she is hallucinating.  I have to actually sit a few feet from her every moment she is awake and alert, since she will stand and may fall soon thereafter.   She is completely unaware of any concern.  She doesn’t know she has fainted after she has become conscious again. 

She surprised me and slept fairly well last night.  She did all right at breakfast, fainted for a while, had her bath, ate lunch as Hospice Nurse Jennifer filled out some forms and took her BP.  It was 100 over something, still very low.   Mary Ann sat for a while and then headed to the bedroom and slept for four or five hours. 

I got her up for supper.  We went out again to pick up ice cream and a tankard of PT’s coffee to reheat in the morning (I’m a hopeless fan).   Since she was again in pop-up mode, I needed to get her in the car, seat belted in, so that I could relax and know that she was secure.   The ice cream was just an excuse for getting her into a secure place for a while.  You believe that, right?

Not long after eating the ice cream, she headed off to bed.  In spite of the long nap, at least at the moment she is sleeping.  It may not last. 

One of the people in the online Lewy Body Spouses group lost her husband today.  She described in detail the rapid decline and the process of dying.  My words to her were these:

You have been a mainstay in this group for a long time.  You have put words to what we have been experiencing.  You described what awaits us.  My condolences are laced with anticipation, as a result, I feel vividly what you have just experienced and pray for the peace Charlie now has to free you to find peace here, understanding that the peace does not void the pain you feel.  That is the price of love. 
Peter”

Our turn will come.

 

March 12, 2010

And the Walls Came Tumbling Down

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , |
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Not yet, but there are seven guys with trumpets of rams’ horns followed by a large crowd who have been circling the house for some days now.  Should I be concerned??

The addition of a sun room that will change exterior space into interior space adding a six foot by nine foot sun area with twelve feet of floor to ceiling glass (six feet of which is sliding doors) is now in the process of construction.  The new exterior walls are almost done.  The old interior walls will be removed some time in the next few days, probably Monday.

We now spend most of every day and night in this little townhome, 1150 square feet upstairs — easy to care for but somewhat confining.  The large pondless waterfall that we put in last summer is wonderful, but not visible from inside the house.  When this project is complete, the waterfall will be in full view.

Mary Ann’s assessment of the project is that I have really gone overboard.  I think when all is said and done, she will like it very much.  She has never enjoyed going out and spending time on the deck.  This way she can see the beauty of the area behind the house from the warmth or the cool of the house.

I will make no pretense.  This is for me.  I am nurtured by the outdoors.  I crave light.  This will provide access to both while still in the same space as Mary Ann, keeping her in full view.  When the project took shape and the deal was consummated, it was not so clear that Mary Ann was declining to the degree that is now apparent. It seems to me that the timing is actually working out well.  This is a helpful distraction from the focus we have had on preparing for the next phase of our lives.  The project feels very life affirming to me.   Yes, we are spending the Kids inheritance!  They know it and have encouraged us to do so.

The last couple of days have included two nights of adequate sleep, interrupted, but not too often.  Yesterday she ate well for two meals and missed the third, sleeping through it.  Bath Aide Zandra did do a shower since Mary Ann’s leg strength seems to be returning.  She had problems with her, but got the job done.

Today has included lots of fainting, even just sitting in the chair.  I hope that will subside for a time.  A huge rolling shower chair has now been delivered.  Hopefully, that will make a difference.  The Hospice Aide will come tomorrow for the first time.  This way Mary Ann will get three showers a week.  Since she is incontinent much of the time, it is good to keep her clean.  We change disposables very often (cost adds up fast, but worth it) to avoid urinary tract infections [UTI].

The hallucinations were in a challenging mode.  Mary Ann was popping up to go somewhere and do something much of the time she was out of bed.  I, of course, needed to get to her immediately to keep her from falling.  When I got there, she usually didn’t know what she was up for or where she was going.  A few times she had a need that was created by a hallucination. A few times when she was lying down but awake, she was having a waking dream and talking to me about things that had no connection with reality.  I am sure the hallucination/delusion/dream times are distressing to her, and they certainly are very difficult for me to deal with.

The Hospice Chaplain stopped by to introduce himself.  It is a frightening thing to put two preachers together.  Poor Mary Ann couldn’t have gotten a word in edgewise even if she tried.  He would come at whatever intervals we chose.  Since we have a good support system, I suggested once a month.  His time will be best used with those many who do not have an active support system.  It is nice to have an option that is not part of in our organization or denomination.  He spent a good portion of his career in Brazil.  I suspect he has plenty of interesting stories.

Later in the day friend (and former parishioner) Don came by to check out the project.  He had a couple of good suggestions.  More importantly, he brought a cup of coffee from PT’s.  We stood there talking long enough that the workers thought they might put us to work.

For supper we enjoyed a small Lasagna that Daughter Lisa had made and put in the freezer for us when she was here.  Afterward Mary Ann was willing (of course) to head to Baskin & Robbins to get some ice cream treats to bring home.

She is now in bed.  I suspect, given the hallucinations today, tonight may be a difficult one.  We will see how it goes.

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.

 

March 11, 2010

Cardiologist Agrees!

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , |
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Even though at the family meeting we all heard Mary Ann say yes, she would like to have the Do Not Resuscitate order in place, it is not easy to formalize that decision.  There is a paper to be signed and witnessed by someone outside of the family to make it valid.  It can, of course, be rescinded at any time. 

It was a help to have a long conversation with our Cardiologist who knows Mary Ann’s situation intimately.  It was almost seven years ago that she went into the hospital through Emergency with Congestive Heart Failure.  That was his first exposure to the complexities of Mary Ann’s unique situation.  He is the one who said she was within a hair’s breadth of going on a ventilator at that time. 

It was then that the silent heart attacks were discovered.  We apparently assumed it was just bad reflux from taking all the medications every day for the Parkinson’s.  The Cardiologist confirmed just how unlikely it would have been then to imagine that almost seven years later, she would still be here and we would be having today’s conversation.  In fact, he admitted that while none of us can predict such things, even with all her heart problems, he does not expect that to be what finally ends the journey for her. 

Mary Ann is one tough Cookie!  I respect his assessment of the her situation.  In fact it encourages me that while Hospice works with a six month trajectory, Mary Ann may have a different idea.  As difficult as this is sometimes, I would rather continue for a long time than lose her. 

In fairness to Mary Ann, we need not to do things that could prolong her days past her ability to have some quality of life.  Yes, we seem to have moved into the last leg of the trip.  We need to be realistic and put in place plans that fit those circumstances.  We do not, however, have to assume any specific time frame.  We can’t know that.  While we are here together, we are here together.  It is not that somehow there is less of Mary Ann because she has a cluster of health problems that seem to be moving into the end stage. 

Earlier today I read a post in the online Lewy Body Dementia Spouses group that was a lengthy article that was published in England containing a detailed description of LBD and stories of folks who have had it.  It was interesting to see in such specific terms so many of the problems Mary Ann has, especially the hallucinations and delusions.  Mary Ann’s is a textbook case.  The article pointed out that the whole person is still present in someone with LBD pretty much to the end.  That whole person comes in flashes or for longer periods of time, without warning when that whole, lucid person is about to return or about to leave again.  It is confusing but at the same time comforting to know she is likely to still be with us some of the time to the very end. 

One thing about which the Cardiologist was adamant was to let go of the heroic measures and do exactly what the Hospice folks asked us to do.  Call Hospice, don’t call 911, don’t go to the Emergency Room, don’t use the paddles, don’t do CPR, don’t go to the hospital, don’t insert a feeding tube or other mechanisms for prolonging days that are coming to an end naturally as her body winds down.  Yes, use every medication available to treat immediate symptoms.  If there is an infection, use antibiotics.  Control pain to the degree possible.  Gratefully, most of the things above are already in the pretty standard Living Will Mary Ann and I had done by a local Attorney credentialed in Elder Law. 

It was very helpful to have confirmation by the Cardiologist that we have made the right decisions along the way.  In Mary Ann’s case the combination of End Stage Parkinson’s, Parkinson’s Disease Dementia that is progressing rapidly, and a Cardio-Vascular System that is well past repair, made the decision process less challenging than others might have. 

With all that said, this is Mary Ann we are talking about.  Seven years from now the Cardiologist and I may be having another conversation about Mary Ann much like today’s –” Who could have guessed seven years ago….??”

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.

 

March 10, 2010

Good Day with Good People

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , |
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It was a very good day today, given recent challenges. The summary is: She went to her Tuesday morning group; the Hospice Nurse visited her; Mary brought Baskin & Robbins (yeah!); and the Hospice Social Worker came and spent some time with us.

Mary Ann decided that she should get to her Bible Study Group this morning, even though it appeared that she was too tired and would not be able to get up in time.  As I fed her breakfast she said something very revealing about her perception of Hospice.  I was not sure how much of what we talked about through the family meeting and meeting with Hospice folks.  She asked what she would be doing the rest of the day after her group study and if she would be spending the night here at the house or not.  It dawned on me that she had somehow gotten in her mind that enrolling in Hospice meant she would spend her time at a Hospice place.  We do have a Hospice House here.  Our Parkinson’s Support Group meets at a local Hospice office.

I reminded her that one of the main benefits of Hospice was that we could stay home to the very end.  I told her that the Hospice folks would come to us here at home.  It was an interesting conversation.  She seemed to understand.  It did reveal just how significant the decision about Hospice was for her.  When she said yes to Hospice, she must have been saying yes to going someplace other than home from now on.  That is a thought I still could not tolerate.  As strong-willed as she has always been, it has surprised me how readily she has generally accepted what the Kids and I have thought best for her.  We always made clear that we would honor whatever her wishes were to the extent possible.

At Bible Study, apparently she participated appropriately at the beginning, then soon put her head down for the rest of the time other than pill time.  It is such a wonderful thing that the group is so accommodating to Mary Ann even when she cannot fully participate.

She wanted to eat at the New City Cafe, but thought better of it when we got to the parking lot.  She was still struggling in the car just to keep her head up.  I went in and got her favorite meal there, the Seafood Tortellini Salad to take with us.  When we got home she ate lots of it, along some bread they sent with it and her usual Pepsi.

Early in the afternoon, Hospice Nurse Emily came by.  She is young and enthusiastic.  She did a great job with Mary Ann, who was in bed napping by that time.  She took her vitals and checked her out.  Again, her blood pressure was pretty high. The equipment company had delivered the wrong style shower chair.  When Nurse Emily got back to the office, she followed up with the supplier and, hopefully, a more appropriate chair will be delivered tomorrow.  Bath Aide Zandra’s Supervisor called and said that tomorrow’s usual shower and hair washing would be a bed bath instead.  I am hoping the shower chair will allow showers to resume.

Another reason that I am hoping the showers can resume is that Mary Ann seems to be regaining the ability to help in transfers from bed to transfer chair to shower chair to the chair at the dining room table.  The curled hands seem to be loosening some.  It may still be wishful thinking, but it seems that her hands are also less swollen.  The medication, Amantadine, that was stopped certainly has a powerful impact.

The Hospice Nurse will come twice a week, Tuesdays and Fridays.  We can cut that back to once a week if that often does not seem necessary.  Soon after Nurse Emily left, Mary came by for a visit, bringing the Baskin & Robbins ice cream treats.  Mary schedules the Volunteers who visit Mary Ann.  As I have mentioned on occasion, we use the free website http://www.lotsahelpinghands.com to schedule times and days of visits.  It is a wonderful tool.

Just as Mary was leaving, Hospice Social Worker Kristin came by.  She spent quite a while since it was the first visit.  I was pleased at how responsive Mary Ann was with her even when the questions were not easy one word answer questions.  Mary Ann answered many questions about how she feels in different areas.  There were questions about how anxious she was, or scared or depressed or hopeful.  Mary Ann seemed to answer as I expected, with a lower level of concern than most would have in Mary Ann’s situation.  I understood one of her responses well enough to bring up the dreams about our divorcing and the kids divorcing (all not true, of course).  She admitted that those dreams were upsetting to her.

Social Worker Kristin also asked how I was doing in all the same areas.  As I responded, it seemed to me that while I am experiencing fully all the dynamics of our situation, it is happening in a fairly healthy way.  When she asked if I was grieving, I answered by saying I am using the pay-as-you-go plan.  I am trying to surface the feelings and face them as they come, rather than hiding them from myself and others.  She asked about guilt feelings.  I told her that I choose to admit pretty boldly the mistakes of which I am aware.  It was an opportunity to reveal a bit of my understanding of the unconditional love of God.

After that conversation, I felt as if both Mary Ann and I are as okay as we can be given our circumstances.  If we were more okay with them I would really worry about our mental health.  If we didn’t get down and a little depressed once in a while, we would have to be crazy!

I am certainly pleased with the care Hospice is providing.  I am also pleased with so many good people’s willingness to show their concern and do whatever they can to help.  It is as if there are two worlds out there, the one reported on in magazines and newspapers, on the radio and on television and computer screens — and the world made up of the flesh and blood folks with whom we live in community.

Mary Ann did get to sleep last night and slept well.  Me, too.  She ate well at all three meals (I fed her) and she is now in bed.  As always, I will not presume to predict how the night will go.

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.

 

March 9, 2010

Cherish?? Maybe not Every Moment

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , |
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“I am cherishing every moment we have together.”  That is what I said in last night’s post after the challenge of feeding Mary Ann.  I lied!  As terrible as it sounds, I don’t cherish every moment.  At 4:15am after having been aroused for one thing or another multiple times an hour (the last one only five minutes before) Mary Ann insisted on getting up.  I did not cherish that moment with her.  I got her up and out in front of the television in the living room and went back to bed for an hour.  Then she was ready to lie down, at least for a while.

I guess I am a terrible Husband and Caregiver to admit to not cherishing at all times my sick wife on the last leg of her journey from here.  Yes, I do feel guilty about it.  I sound so sweet and loyal and loving when I say I cherish every moment with her.  I am not all those things!  I am just an ordinary selfish somebody trying to live out my life and my relationship with Mary Ann with a degree of honor, expressing my love for her.  I do cherish most of the time with her, extending even into waste management.  I just get grumpy when I don’t get my beauty sleep.  (Who is going to be the first smart-aleck to suggest just how clear it is that I am seriously sleep-deprived?)

Is it the Amantidine that we resumed that is making the hallucinations and restlessness so intense, or, since she had slept four days, were we just due for the usual return of that behavior?  God only knows, and He ain’t telliin’.  How about the idea of somehow trying to get God a wireless router so that he could just email responses to prayers and cries for help??  How getting on that, Steve, Bill?

When Daughter, Lisa was here last week, her Mom slept all but about four hours of Lisa’s visit.  “Lisa, I would gladly have traded last night for one of the sleep days or nights you had when I was gone.”  Yes I am grateful that Mary Ann is napping now.  I gave her the morning dose of Amantidine, still hoping that she will regain the use of her hands and the ability to assist with her leg muscles when being transferred from her chair to the bed or toilet stool or dining room chair or car, should we be able to get her out again.  This almost 67 year old body is beginning to show its age (the mind is still 25 years old, except for the memory which is pushing 90).

At one point last night Mary Ann was convinced that she was not in her bed, but another bed like hers.  She was convinced this morning that the dining room table was not our our dining room table.  In fact when I first tried to transfer her to the dining room chair for breakfast, she refused since she didn’t want to sit next to the bride.  At least when I checked with her, the bride wasn’t Lulu (the woman I married after divorcing her in one of her dream/hallucinations).  She didn’t know who the bride was.  When I asked if she wanted me to turn on the television she said it was “his” television, not ours.

She has been napping for about three hours now.  Yes, I am grateful for the break.  I just don’t want her to sleep too long.  She had a good breakfast, but she has not yet had lunch.  It is after 2pm.  Our Daughter-in-Law Becky relayed an email from a close friend who works for a Hospice.  In that email, she said that people come to need less nourishment at this time in life, suggesting that I can relax if a meal is missed.  Mary Ann always “ate like a bird” — one reason she has never gotten overweight (very annoying) in all our years together.  Other than ice cream, she usually eats what would be the equivalent of a child’s portion (a pre-teen child).

This morning Bath Aide Zandra brought a helper with her since Mary Ann had fainted so many times the last time she did her shower.  Zandra was concerned that Mary Ann had hit her head because she couldn’t get into the right position soon enough to stop her from falling off the shower chair.  She asked about the possibility of getting a secure three sided shower chair so that Zandra could stand in front and be sure she wouldn’t fall to the side.  We had a tubular metal rolling shower chair that we obtained a few years ago.  It turned out to be unsafe because of the reinforcing bar across the front, making safe entry and exit from the chair virtually impossible.

Zandra was a bit distressed to see how much Mary Ann had declined since her visit last Wednesday.  Today Mary Ann could not assist at all in getting from the transfer chair to the shower chair and back.  Mary Ann’s hands were fine last Wednesday but swollen and clubbed (nor sure that is the right word for describing the claw-like form) today.

I just called our Hospice Nurse, Emily, who listened carefully to what we needed for the shower.  She said she would try to find it for us.  In fact, she said that if we didn’t hear from her, one would be delivered tomorrow afternoon.  Holy Mackerel!! That is an unbelievably fast response.  I have seen PVC pipe chairs that looked sturdier, but the last time I searched a couple of years ago, I didn’t see one without a bar in front.  I hope the supplier Hospice uses has something workable.

Mary Ann had an appointment with the Dental hygienist for her much needed quarterly cleaning scheduled this afternoon.  I did try to get her up in time to go, but she declined.  That was at about 1pm.  It is now 2:45pm and she is still sleeping.  Again, she didn’t want to go to bed until after 11pm last night and spent much of the night, especially from 2am or 3am on, up and down.

She slept until some time after 5pm. She ate a good supper, sat in front of the televsion for a while, then headed back to bed about 7:30pm.  At about 8pm she was hungry and wanted a bowl of ice cream again.  After taking some Ibuporfen for back pain and then later taking her night time meds, she is now lying down.  I am not expecting her to settle in without lots of restlessness tonight.  We will see.

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

 

March 8, 2010

Mary Ann is Now in Hospice Care

Posted by PeterT under Daily Challenges, Family, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , |
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What that means is that we have someone to call whatever comes up.  A Hospice Nurse will stop by a couple of times a week.  We have added one day a week of having an Aide to help with shower and hair.  Mary Ann loves current Bath Aide Zandra, so we will continue to use that paid service.  All the Hospice costs are covered by Medicare.

The Hospice Nurse who enrolled Mary Ann today was already helpful.  Mary Ann declined so much in the last few days since we took her off one med (Amantadine), that I thought we should start it again.  Because these are powerful meds, I didn’t want to do it without professional advice.  This is Sunday.  Nurse Jennifer contacted the Hospice Pharmacist and confirmed that it was all right to restart the med.  The most obvious change was the clubbing of Mary Ann’s hands, rendering them useless — in four days.  We are all hoping that her hands will return to functionality when the med reaches the therapeutic level in her bloodstream.  There are no guarantees that she will regain what she lost.

Mary Ann was a little more responsive this afternoon.  She was up while the Hospice Nurse was here, and she responded appropriately a few times.  She has been sleeping much of the day, but up for breakfast and to get dressed, as well as an hour or two after the Hospice Nurse left.  She was actually lying with her head down and her eyes closed, but at least she was out of the bedroom.  She ate lunch, the usual half sandwich, chips and a Pepsi, followed by a good-sized bowl of Buttered Pecan ice cream.  As hard as it is to hold her head up and feed her at the same time, I am cherishing every moment we have together.

She has not yet eaten supper.  I have been going in to talk with her every half hour or so to see if she is hungry or wants to use the bathroom.  She finally got up to eat at about 8pm.  She ate a substantial supper capped off with a small Boost and ice cream shake.  The Boost should help assure adequate nouishment.

As the evening has worn on, it is beginning to appear that the Amantidine is a very problematic medication.  She is now very alert, unable to sleep, doing some hallucinating, and when she was in bed complaining that she couldn’t move.  She is up and in the living room watching television, sitting up and it is 11:15pm.  There is no sign she is slowing down — I take that back.  She just decided to lie down in bed.  I don’t know how long that will last, but she has been sleeping most of the time for almost five days, so I guess it would be no surprise if she is up many times tonight.

It is tiring be be jerked around so much of the time by medications that wreak havoc with her functionality.  Sometimes they work, sometimes they don’t.  Sometimes they do exactly the opposite of what they are supposed to do.  Then in an hour or a day or a week, they start doing what they are supposed to do — or not.  I will wait to see if her hands open and resume usefulness.  If they don’t, I will talk with the doctor again about the possibility of removing it.  When looking at side effects, Amantidine’s list contains very many of Mary Ann’s problems.  Stopping it seemed to result in the clawed hands and weakness that does not allow her even to assist in a transfer, let alone walk, even with assistance.  Today after restarting the Amantadine this afternoon, it has seemed to produce more strength and alertness, sort of bringing her back to life.  Of course I can’t be sure the medicine is causing all the changes.  It is just that the changes seem to associate directly with the times we stopped and then started again the Amantadine.

Even the professionals, Doctors and Pharmacists can’t help very much since people don’t always react in the same way to the same medication.

On the positive side of taking the Amantadine, if it helps with her alertness and ability to communicate, that will be a very good thing in the next few weeks.  Some of Mary Ann’s friends and family intend to come and visit.  They would appreciate being able to interact meaningfully with her.

Some readers have asked about the time at the Retreat Center — how it went.  I have already written about the two evenings.  The day Friday was wonderful.  It was 70 degrees and full sun all day long.  Thursday night, when heading out to watch the sun set, I was spotted by a deer, who headed over to be with ten more deer.  I watched them for a long time.

During the day on Friday, I walked at a leisurely pace along the path that wanders back and forth through a large wooded area.  The moss on the path was in its new spring shade of green.  The trees were budded out ready to burst open with flowers for leaves.  There were birds to be enjoyed. There were some I couldn’t identify (not unusual).  Even though they are common, the Red-Bellied Woodpecker that doesn’t have a red belly, and the Yellow-Rumped Warbler, that does have a yellow rump are just fun to call by name.

I did see something out of the ordinary.  It is what one of the staff there has dubbed the Mutant Armadillo.  It is certainly an Armadillo, but the largest one I have ever seen, dead or alive.  I suspect it would take five or more of the ones that are routinely spotted on the side of the road with their feet in the ari to match the weight and size of the monster I saw.

I sat for a long time on the three legged stool in the fartthest corner of the property I could reach.  I read Psalm 104, a great description of the creation and all that’s in it.  Then I read the a few chapters in the book probing the implications of physics in regard to the presence of God.  It was a good grounding for me as we ride the roller coaster we are on here at home. I did take a moment to phone home from that place.  I have done that on the last few retreats.  It helps me keep the world of prayer and meditation connected to the day to day reality.

I continue to be overwhelmed by the words of support through the electronic media.  There is no chance to feel isolated and alone when so many are thinking of us and praying for us.  Thank you all for that.

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.

 

March 3, 2010

Anticipation

Posted by PeterT under Daily Challenges, Family, 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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Connecting the posts on this blog to Facebook has brought a wonderful new dimension to this experience.  It is hard to describe how meaningful it is to be noticed by so many of the folks we have known and cared about over more than six decades.  It is easy to feel very isolated when spending most of every 24 hours inside a small townhome.  It is hard to feel isolated when reading comments of so many who wish us well.

It struck me today that it is a time of anticipation.  So many things are converging on the next few days.

  • The Neurologist okayed the removal of one of Mary Ann’s long time meds.  It is called Amantadine.  Its purpose is to reduce the dyskinetic movements produced by years of taking the main Parkinson’s med, Sinamet.  Dyskinesias are the wavy  movements that are apparent when Michael J. Fox is on television.  Those movements are not caused by the Parkinson’s but by the medication that gives basic mobility.  The Amantadine can trigger hallucinations and fainting spells (Orthostatic Hypotension).  Both are major problems for Mary Ann.  We will see if the trade-off is worth it.  We have stopped the Amantadine and we are waiting to see how Mary Ann will fare.
  • We are anxiously awaiting our Daughter Lisa’s arrival late tomorrow evening.  We both love having our children with us.  Lisa lives a ten hour drive away.  On that account it is a special treat.  It will be good for both Mary Ann and Lisa to have a couple of days of one on one time.
  • I am anticipating almost three days of solitude at St. Francis of the Woods Spiritual Renewal Center in North Central Oklahoma.  I will hike and read and pray and sleep and listen to music and look for birds and varmints of all sorts.  I will walk for hours and let the endorphens wash over my brain.  I will think about where we are in our lives and how to better deal with it all.  The reading will include devotional material, the Scriptures, a couple of books that deal with Quantum Physics and Theology. I will do each thing if and when I choose.  For a few hours the locus of control will shift from external demands to internal needs.
  • I am anticipating, assuming it works out, time talking with as good a friend as a person could have.  Many years ago John and I spent hours talking as he was going through the loss of his wife to Cancer and I was trying to come to terms with Mary Ann’s Parkinson’s.
  • I am anticipating a visit at our house tomorrow afternoon from a couple of people on the Staff of a local Hospice program.  They now have access to all of Mary Ann’s doctors, and whatever information they can gather from them.  I will, of course, have many questions.  There are certain criteria that must be met to be served by Hospice.  Actually, I would like very much to be told that Mary Ann is not yet eligible for Hospice.  This is a time we would love not to measure up.
  • I am anticipating the delivery of materials tomorrow and the beginning of the construction on our new sun room, which will become interior space in the house.  When it is done, we will be able to see from the inside of the house the waterfall project that was done six months ago in our back yard.  Since we are here pretty much 24/7, we want the best and most nurturing environment possible.  I am bummed that the project will begin while I am gone.  The weather here forced the later beginning time.
  • I am anticipating sitting with Mary Ann (depending on how she is doing) and Daughter Lisa and Son Micah this Saturday evening to talk about Hospice, especially the prospect of putting in place a Do Not Resuscitate (DNR) order.  This has been a tough journey for the kids.  Gratefully, they are committed to whatever seems best for both Mary Ann and me.

The day went pretty well today — better than I expected since she is in the hallucination cycle.  She went to her Tuesday morning group and tracked well there according to Mary, who sits next to her.  There was some intestinal activity, but since a number of the ladies in the group have served as Volunteers with Mary Ann, Eva and Mary managed to deal with the situation. While Mary Ann was meeting with hergroup, I enjoyed some time talking over coffee (PT’s of course) with the Pastor who is now in the position of Senior Pastor from which I retired.  It was a good time together.

Mary Ann wanted to go to McFarland’s, the restaurant at which we were eating when I decided that it was time to retire and be with Mary Ann full time.  I thought again how grateful I am to God that the decision was so crystal clear.  It took approximately 13 seconds to finalize that decision as I watched Mary Ann struggling to eat.  Today she struggled again.  She got nothing in her mouth until she finally agreed to allow me to feed the hamburger to her.  I had long since finished my meal.  With my help she was able to consume two quarters of the hamburger.  She had some left over Baskin & Robbins ice cream from the freezer when we got home.

Later we managed to get out to the grocery and buy lots of food, especially ingredients for Lisa to use to make some things for our home freezer that I can thaw and just pop into the oven.  That is a tremendous help to us, since I am well-known for my lack of skill in the kitchen.

Supper was another challenge, but she did get some food down.  She then ate the new two scoop B&R treat that we had brought home this afternoon.  Are we bad or what!

Tonight the dreams and hallucinations are active.  She called me to come in and said, “I am awake, but I don’t know how to get up.”  She thought it was daytime.  She had one of the dreams that she cannot differentiate from reality.  I was taking a Call (another position at a church somewhere), and we had to get ready to leave.  There was a hug and a kiss when I told her I am not going anywhere, I am for her and her only.

Well, there is no telling what tonight and tomorrow will bring, but whatever it is, we will make the best of it, grateful for the time together.

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.

 

March 2, 2010

Time to Accept a New Normal

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , |
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I think spending the day last Saturday while Mary Ann was sleeping, moving into and through the feelings about where we seem to be headed allowed me to listen better and and come to terms with where Mary Ann is now in the disease process.

In the phone call about the fax I sent last week, Dr. Pahwa’s assistant relayed the option that Mary Ann see a Psychiatrist to look over the medicine regimen to see if there are some better options for her.

When we talked with Dr. Pahwa today, it was apparent that the Psychiatrist option made sense if I was still uncomfortable with the Seroquel.  We would need to use a local Psychiatrist where we live (an hour from KU Med) since one of the main alternative meds demands monthly blood tests to monitor it.  I have read enough to know, and Dr. Pahwa confirmed, for the sort of dementia Mary Ann has, Seroquel is by far the better choice.  The alternative also is likely to make the fainting worse.

Here is the heart of the matter.  There is no one around this area who knows the unique characteristics of Parkinson’s as well as Dr. Pahwa.  I suppose it sounds arrogant to say so, but I would have to explain the uniqueness of Mary Ann’s complex version of Parkinson’s and the character of this dementia to someone who is a generalist and does not focus all their attention on Parkinson’s.

I know of nowhere to get better information on what to do and when in dealing with the complexities of Mary Ann’s expression of Parkinson’s.  Every time in the last 23 years we have gone to anyone other than the Dr. Pahwa and Dr. Koller before him, Mary Ann has done poorly.  She has been where she is now in some ways at least twice before, once 14 years ago and once about 8 years ago.  The first time it was Dr. Koller and the second time it was Dr. Pahwa who brought her back to a high level of functionality each time within weeks of seeing them.

While he was sensitive in how he approached it, and actually simply responded with a look that said more than enough when I said it, Mary Ann is doing as well as we can hope given how long she has been battling the Parkinson’s.  Changing meds in some elusive search for the perfect combination restoring her magically to a former place in the journey would be a very risky exercise in futility.  What might be gained is not worth the risk of what could be lost.  Those are my words, but he agreed immediately.

If we lower the Seroquel, we opt for less sleep time and more hallucinations.  Selfishly, I don’t think I could handle that result.  The two days and nights she sleeps, allows me to sleep.  The times there are streaming hallucinations already push me right to the outer edge of my capacity to cope.

It is time to accept that we are where we need to be.  This is our new normal.

We talked some more about enrolling in Hospice.  We will have a family talk this Saturday when the kids and I are together.  If Mary Ann is awake and alert, we will certainly include her in that conversation.  If she is not, I will talk frankly with her about it.  I have already begun doing so.  I talked openly with Dr. Pahwa, as we were together with Mary Ann in the Examination Room.  I talked about the DNR (Do Not Resuscitate) order that would be expected for the full Hospice program.

I will try to get someone from Hospice to come over to the house before I leave Thursday morning for three days of solitude at the Spiritual Renewal Center in Oklahoma.  I will also try to get any input the Cardiologist might be willing to give that could help inform the decision.

I mentioned in last night’s post that Mary Ann was beginning to hallucinate.  She also fainted two or three times during that first commode trip of the night.  She did not sleep soundly through the night.  There were a number of trips to the commode.  As happens when we transition from sleep days to hallucination days, she was up more than once an hour in the last half of the night.  I finally fed her a single serving container of applesauce and took her out in front of the television with the promise that she would not get up.  Then I got a few minutes more sleep, until the alarm went off, got showered and dressed.  By that time, she had, of course, gotten up and was on the floor outside the bedroom door.  She did get a scrape on her leg, from what I am not sure — there was nothing obvious that she might have hit.

She took her pills and ate breakfast in time for Bath Aide Zandra to get her showered, hair washed and dressed in time to leave for the Neurologist appointment in Kansas City.

She had pretty much shut down and moved into her head on her lap mode as we moved from the bedroom to the door to the garage.  I have never had a more difficult time physically, getting her out of the chair, to the steps, down the steps, to the car, and into the passenger seat.  I almost had to carry her.

We made it into the car.  She had her head down the entire trip to KC.  Getting her out of the car and transferred directly to her wheelchair went much better there — probably because there was no walking, nor were there any steps.  In the past, steps have been her best thing.  That is one of the  unusual characteristics of Parkinson’s.  The line of the step make it easier to get her feet to move than on a flat plane.

In the doctor’s office, she was in leaning forward mode, although not all the way to head in lap position.  She was minimally responsive during most of the time with the doctor.

We agreed to fill out an assessment that will be used in a study on the impact of non-motor symptoms of Parkinson’s — all the problems other than the ability to move arms and legs, and keep balance.  The survey took a very long time.  Mary Ann was really struggling to respond.  I am not sure how helpful we were to the study.  One interesting quirk was that while she managed to say the months of the year backwards, December, November, etc., she could not track with another request.  She was asked to count backwards from 100 by sevens.  I was glad I wasn’t asked to do that.  Kelly, who was administering that part of the survey, explained it and repeated the instructions a number of times.  Mary Ann’s first response was to just count backwards from ten to one.  Kelly repeated that it was counting from one hundred, subtracting seven each time.  She then said what is seven subtracted from one hundred.  Mary Ann answered, three.  She never connected that Kelly said 100, no matter how many times she explained it. Mary Ann always responded with ten.

Admittedly, it was hard to watch as she was asked to write a sentence of any sort, and she made some tiny scribbles and was not able, of course, to read it or say what she wrote.  She was to draw a simple shape matching one on the paper in front of her.  She made a couple of attempts, but to no avail.  Mary Ann was always very good at drawing.  She illustrated a children’s book she wrote many years ago.  She never tried to get it published, but it is very cute.

I know she hates how much she has lost over the years.  It has become just a fact of life now.  It is part of our current normal.

When we got home Mary Ann ate some thick and hearty steak soup with my help, finally falling asleep in her lemon meringue pie. She was refusing to let me help her at that point.  She napped in bed for a couple of hours, got up, ate the pie (this time letting me help), and soon headed back to bed.  Of course, I cannot be sure how tonight will go, but we are on the increasing hallucination time if her current cycle of symptom changes continues.

Today was a day in which the facts of our situation seemed quite clear. Having worked through the strong feelings about the matter last Saturday, and a Sunday morning a month ago, seemed to make it easier to be rational about the information available to us today about where Mary Ann is in this journey with Parkinson’s tagging along.  Dr. Pahwa reminded us how long our battle with Parkinson’s has been going on — twenty-three years now

It is time to accept where we are in the journey.  We don’t have to like it.

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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