November 14, 2009

Fainting Returns!

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Twice today Mary Ann fainted.  She has not done so in many weeks.  The fainting is due to a sudden drop in blood pressure, referred to as Orthostatic Hypotension.  It is another of the systems run by her compromised Parasympathetic Autonomic Nervous System.  That system runs the smooth muscles, such as those that create the peristaltic movement that keeps everything moving through the alimentary canal (esophagus, stomach, intestines, colon).  It also runs the smooth muscles that cause our arteries to constrict when we stand up, raising our blood pressure to compensate for the pull of gravity.

That was a lot of technical language that simply means that people with Mary Ann’s version of Parkinson’s and Dementia are often constipated and often faint after getting up from a sitting or lying position.  In both cases today, Mary Ann fainted when on the toilet stool, after trying to get up.  Having watched this at close range for so many years, it was clear to me that both syncopal episodes (medical term for fainting is syncope) happened when a dose of her generic Sinamet kicked in.  When it kicks in her body starts involuntary wavy motions called Dyskinesias.  Sinamet (Carbidopa-Levadopa) is the main medication that treats Parkinson’s.  It is the same medication that has been used for decades.  Most of the newer meds just help the Sinamet do its job better.

During the hospital stay, I suggested lowering her dosage in half of the medicine (Midodrine) that raises her blood pressure to keep her from fainting.  Last summer we doubled the dosage when the fainting got out of hand and was reducing dramatically our quality of life. That medication and the higher BP slowly damages the heart, reducing its flexibility.  Her heart is enlarging, stiffening, her kidneys are being damaged.  If we eliminate the Midodrine, it might add a little time, but the time would be of little quality.  The goal of my suggestion of lowering the dosage is to find a middle ground that gives us the best we can get of both longevity and quality.

I am not yet ready to raise the dosage of Midodrine.  If the fainting comes only when the Sinamet kicks in, I think we can manage the problem.  If the fainting increases to the level it was last summer (multiple protracted fainting spells, sometimes even just when sitting in her chair) we will need to increase the Midodrine back to the full dosage.  We will do what is necessary when it becomes necessary.  Gratefully, the Cardiologist and Neurologist understand the problem and have given Mary Ann and I the freedom to adjust the two meds (Sinamet and Midodrine) within a prescribed range as we determine appropriate.  I am grateful for the latitude in dosing, and I also feel the weight of that responsibility.

The day continues: Mary Ann slept until about 2pm.  I got her some lunch.  She did reasonably well at feeding herself.  She still is not eating enough.  I convinced her to let me help her with some cake after lunch.  She kept putting the fork to her cheek instead of to her mouth.  She was resisting my help, but eventually I was able to get most of it in her mouth  She managed a snack of ice cream later.

We got to the grocery store!  I was hoping we could get it done.  Since she is in the wheel chair, mobility is not an issue when going to the grocery.  I push her with one hand and pull the grocery cart behind with the other.  It is a little tough on my wrists, especially when she drops her feet to the floor and I am pushing against rubber soles on a tile floor.  Years ago, she used one of the motorized carts.  We gave that up.  There were too many displays put at risk by a driver with spatial issues.

We brought home Sesame Chicken from the Chinese counter in the store, so supper went pretty well.  She went to bed at about 7pm and has been sleeping pretty soundly since.  The first couple of hours after she goes to bed are usually pretty good. I will continue this post tomorrow with a report on how the night went (way more information than any who read this blog actually want or need).

Next day (Friday):  The night wasn’t too bad, but it was another early morning with multiple trips to the commode in the wee hours of the morning and finally up before 7pm.

She ate a good breakfast with my help on the bowl of cereal.  After a while in her chair she wanted to get dressed.  Immediately after getting dressed, she got back in bed for a nap.  That was about two and a half hours ago.  She did get up once for a trip to the bathroom.

The issue of fainting continues to be a concern.  She said that she has been dizzy the last couple of days.  That is usually from the low BP.  I tried to take her blood pressure while she was lying in bed this morning, but it didn’t register on the electronic monitor.  That usually means it is too high for it to measure.  BP is usually highest when lying down, since the heart is not pumping against gravity.

While she hasn’t actually fainted today, she came close to it once when I was trying to get her to the bathroom.  She also has seemed to be dizzy at least a couple more times.  I suspect that the switch to the higher dose of Midodrine will be needed.  I am giving it another day to be sure.

The day continues:  After getting up from her nap, I discovered something mightily irritating.  We had to start using new disposable underwear today.  Kroger’s generic has worked very well for us.  They have just discontinued the combination male/female one for new gender specific ones.  The same size and weight as we used before, but in the new female version managed to leak.  It happened twice.  All her jeans had to be washed.

I can only conclude that someone in the Kroger braintrust decided that it would be better for sales if they marketed gender specific disposables.  That would be fine if they had bothered to make them in a way that actually accomplished their purpose.  To those of us who use them, it is no small inconvenience.  The small amount it took to leak the two times it happened today suggest that a long nap or a long time between trips to the commode during the night would provide enough leakage to demand changing the bedding and washing the linens, as well as whatever she was wearing.

I took them back to the store, got my money back and bought the Depend’s brand in hopes that they will work better.  Even though they also are gender specific, the appear to be constructed in a way more like the generic male/female ones we were using.  The Depend’s brand, of course are $12 and change versus the $9 and change price for the generics.  We buy three or four packages every time we go to the store.  There goes the grocery budget.  We will soon determine if the Depend’s are adequate to the task.

The good news is that I found part of a package of the old generic ones in the bathroom closet.  Hopefully that will get us through until tomorrow.  I change the disposables often to protect against urinary tract infections.

Mary Ann was up for a while this afternoon, after her long nap.  She ate a good lunch, lots of left over Sesame Chicken and a huge piece of cake with ice cream.  We were able to run a number of errands with her in the car while I did the errands.  She is now down for her third nap.  It didn’t begin until almost 5pm.  It is now almost 7:30pm.  She has had no supper.  I don’t think there is a chance there will be much sleeping tonight.

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.

 

September 12, 2009

Bad Day Follows Good Day!

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I am not sure I should be writing a post at the moment.  Maybe later in the day will be better.  At the moment she is napping, and I am able to be at the computer to write.  Last night’s post was almost euphoric after the great trip in the country.  I mentioned before closing that Mary Ann was restless.  She was up every few minutes until about 4am.  Then she insisted on getting up at 8:30am after three or four times up to use the commode between the 4am and 8:30am.

The needs began immediately.  As always, after a sleepless night the hallucinations have been almost constant, resulting it lots of time spent trying to pick up and throw away threads.  At one point as she was sitting at the table preparing to take meds and eat, she asked what the pink mesh was about.  She was convinced that she had it in her hands.

When she has had such a night and gets up early and stays up, there is oddly a great deal of lucidity intertwined with the hallucinations.  She is sometimes almost adversarial.  The restlessness has continued throughout the day up to the nap.  She has been popping up without warning almost constantly.  If I am out of sight for a moment, it is almost a certainty that she will get up.  That means even walking out of the room to get something for her won’t work.

I have asked in every way I know that she let me carry cups and glasses of liquid, since balance and fainting are issues.  Gratefully, it was water and not Pepsi in the cup when she went down, and, gratefully, she was not hurt.  Then there is the button by the toilet stool.  As always I asked that she push it before getting up to avoid falling in the bathroom.  I asked very slowly and carefully waiting to hear her agree to do so, out loud — which she did.  By the time I came back to check, she was half way across the bathroom with her slacks gathered around her ankles.

Last night and today provided a picture of how our lives are now being lived.  Mary Ann’s wants and needs at any given moment in the twenty-four hours of each day determine what I do and when I do it, no matter what my needs are or how I feel.  I have chosen this role, so whining about it is pretty futile.

What increases the level of frustration on a day like today is that there is no one with whom to be angry, no one to blame.  While I am not always shy about letting my feelings be clear, most of the time I do what needs to be done without complaint, and even try to be nurturing when I do it.  It is not Mary Ann’s fault that we are in this situation.  I am not a saint, but it is not my fault either.  Problems like this are not God’s idea of a good time.  God gets blamed for all sorts of things that were not part of the original plan, while often getting no credit for the wonder of life.  God doesn’t play games with folks.  Circumstances like ours happen to good people and bad people and people like us who have both good stuff and bad stuff in us.

I am grateful for yesterday, for a good day, some pleasure for both of us.  I am frustrated today, and struggling to keep it all in perspective.  Writing this post helps give some definition to the day that allows it to begin simply to be a challenging day, not a symbol of our entire life.  There is always tomorrow.

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.

 

August 16, 2009

Better Day Today (Fainting and End Table Update)

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She is in bed watching the Chiefs play a pre-season football game.  They have not been doing well tonight, but they just scored a touchdown.  After the variety of problems reported in the last two evenings’ posts, today has been a better day for Mary Ann. 

She slept through the night with the usual few trips to the commode.  She got up at 9am.  The hallucinations seem to have subsided some for the moment.  She has been up all day, and went to bed to watch the rest of the game at about 8:30pm.  Of course there is no telling whether she will get to sleep or have a restless night after the game. 

There was a point this morning when she began to shut down some, but I offered to wash her hair.  She appreciates getting that done, so she chose to stay up.  After that we got in the car, ate a good lunch at Boss Hawg’s BBQ, ran errands that lasted long enough that we could justify getting a treat at G’s Frozen Custard.  There was a visit to the Library included.  We rounded out the errands with a trip to the grocery store. 

By that time it was late enough in the afternoon that we could watch the news and have a late supper.  I am, of course, hoping that keeping moving all day will help her sleep well tonight. 

As an update on the fainting problem, the Orthostatic Hypotension (the inability of the body to adjust the blood pressure after standing up), Mary Ann has returned to a more manageable pattern.  There is still some fainting, but not so much as to keep us homebound.  The episodes are fewer and generally milder.   The timing of the improvement seems to suggest that it just took the increase in dosage of Midodrine (blood pressure raising medicine) a few days to work.  Gratefully, the semi-annual Echocardiogram (and carotid artery ultrasound) is coming in about a month.  That will help us see how her heart is holding up to the raised blood pressure.  I have some concern that when I checked her BP the previous two days it was pretty low.  That might suggest that the Midodrine dosage is not adequate.  What encourages me is that the fainting spells have not increased.  I suspect it is too risky to raise the dosage of the Midodrine any more. 

One bit of good news on the periphery of our struggle is that the Black Walnut end table that my Dad made has been fixed and returned.  That is the one that broke one of the times Mary Ann fainted last month and fell on it.  (She was not hurt!)  Some good folks from the congregation, Myron and Orvin, worked on it and made it stronger than before by reinforcing it underneath.  They also  added a beautiful and protective new finish to it. 

The Chief’s lost, but it is only the first pre-season game.  Time will tell.

Today was a better day.  How tonight will go remains to be seen.  Then tomorrow is another day.   We will see what comes!

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.

 

July 19, 2009

Blood Pressure Controls seem Broken

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She sat on the bed,  fainted, and just slipped off on to the floor.  She had fainted moments before on the toilet stool.  I got her on to the bed, grateful for the physical strength that remains in this small in stature, 66 year old, pot-bellied frame. 

I finally just laid her down on the bed to nap.  It was her second nap of the day.   The third one came early in the evening.  We did manage to get out for pancakes during the mid-afternoon. 

As is obvious to those who read these posts, this story is getting to be an old one.  It is beginning to suggest that the Autonomic Nervous System is just unable to sustain her blood pressure consistently.  The muscles around her arteries just won’t respond as they should, at least as quickly as they should. 

We have increase the medicine that raises the blood pressure, but have to be cautious about that, since years of high blood pressure have already weakened her heart and kidneys.  The Cardiologist will get another call on Monday. 

The Cardiologist will want to know what her blood pressure has been running.  It is no small task to get a read on her blood pressure.  The battery operated blood pressure monitors are pretty much useless when trying to measure Mary Ann’s blood pressure.  More often than not, there is just an error message.  Either her BP is too high and cannot be measured, or the dyskinetic movements create noises in her body that confuse it. 

I have purchased a stethoscope and pressure band to take her blood pressure myself.  I can get the meter pressure high enough, but the variety of sounds have frustrated my ability to get a good reading.  At times I have been able to do it — not today.  Gratefully we have a parish nurse at our congregation.  She cares very much for Mary Ann and will come and help whenever we need her and it is possible for her to come.

I called Parish Nurse Margaret, who came over to take her blood pressure.  As always, she brought flowers from their flower garden and vegetables from their vegetable garden. 

She arived shortly after Mary Ann had taken her mid-day dose of the blood pressure raising medicine.  Sitting in her chair, her BP was 140/70.  Then we walked into the bedroom to test the effect of standing up and walking.  She sat on the bed and Margaret took it again.  Mary Ann was on the verge of a fainting spell.  Her BP was 108/78.  The lower number was higher than I expected, but she said that when the two numbers are too close to together it can cause the fainting.   

Then Mary Ann laid on the bed while her BP was taken.  That is when it is usually highest, since gravity is not pulling the blood to her feet.  I wanted to measure her BP at what would be likely to be its highest point.  Knowing that measurement would help provide the Cardiologist with the information needed to make a good decision on whether or not it would be safe to increase the medicine that raises her BP to keep her from fainting.  Lying down her BP was 142/100. 

After that Mary Ann moved into her transfer chair, and we moved to the living room.  Margaret took her BP two more times as we talked for a while.  Those readings were 140/80 and 150/8o.  By the way throughout the measurements there were no missed heart beats and her heart rate remained steady at 60 beats per minute. 

With all this information the question remains, is her Autonomic Nervous System’s ability to control her blood pressure simply broken, beyond correction, or can meds provide a return to the quality of life we had a few weeks ago.  A question that follows along beside that one is, will my physical strength be adequate to hold her up with one arm while she is fainting as I pull up clothes with the other hand after using the commode.  When will we pass the limits of my ability to handle her physically?

At the moment, I am still one tough cookie.  I can do it now.  That is all I know.  It is all I need to know.   I’ll deal with tomorrow when it arrives.    I have neither the time nor the energy to waste worrying about what it might bring. 

 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.

 

July 13, 2009

Stresses Converge

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The decline continues as there is still no evidence that increased medication is impacting the multiple episodes of fainting.  In the morning, Mary Ann has continued to faint even while just sitting in her chair.   After the long morning nap there is some improvement, but each day there seems to be less and less improvement.  She can’t stand up for more than a minute or two without dropping back into the chair.  Occasionally later in the day she can make it twenty or thirty feet.  

Today I had the wonderful privilege of Ordaining into the ministry a young man I respect very much.  It was a powerful and meaningful experience for all of us.  The Service went well.  It was especially emotional since his Mother had died a few years ago of a form of Alzheimer’s Disease.  She would have been proud beyond words. 

Having been retired for a little over a year now, today has clarified something about the nature of the Pastoral Ministry.  Leading worship services, when done weekly is no small task, but the regularity helps, especially for someone who is terrified of making a foolish mistake in public. 

As today approached, I found myself deeply apprehensive, especially since it was an Ordination service, different from the Sunday norm.  I couldn’t count on auto pilot to get through it.  It felt like what I would imagine a tight wire artist would feel like if after a year of not walking the wire, he was stepping out on a wire stretched over a canyon with no safety net.  I realize I wouldn’t actually be hurt physically if I made some foolish mistake, but rational thinking has little impact when the fear center takes over. 

The stress of fears about where Mary Ann’s disease is taking her so quickly these last days and the stress of deep seated apprehensions about the Service today converged, making for a very difficult weekend.

It is painfully obvious, that stress complicates caregiving whatever the source of the stress.  It took a great deal of effort to maintain a level of patience through this time.  It helped that by now I know myself well enough to recognize the real seat of my frustration.  It is not at Mary Ann, it was simple fear struggling to find a way to express itself.  

As for today, there was a very capable Volunteer from the congregation during the morning hours, allowing me to do some preparations for the service.  Then this afternoon, while I was at church before, during and after the service, doing what had stirred the apprehensions, there was a paid Companion Care person from a local agency, Home Instead.  She had been with Mary Ann most every Sunday morning the last year or two before I retired.  I could leave the house confident that Mary Ann would be in good hands while I was gone.

One significance of doing the Ordination today is that a month from now will be the fortieth anniversary of my Ordination.  Forty years is the normal length of the career of a pastor as a full time paid worker.  I finished my professional career, Karl began his.  All sorts of emotions were stirring as he took over the last portion of the service as an Ordained Pastor. 

One of the most powerful moments was the choir singing a piece called the First Song of Isaiah.  It is a piece strongly associated with Karl’s Mother while she was alive and at her death.  As they sang and I thought of Tina, my fears about where Mary Ann’s Parkinson’s is now taking her folded into the moment. 

We are on a roller coaster that may go up and down many times for years to come before we move into the endgame.  There are moments when the stresses converge.  I am grateful that we have a framework built on deep spiritual footings.  That is what allows us to live each day as fully as possible in the face of whatever comes our way.

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.

 

July 11, 2009

Still Wondering, Temporary or Permanent?

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This morning was the worst morning yet in regard to fainting.  I don’t recall that she fainted during the trips to the commode during the night and in the morning.  When she got up, we made it through pills and her usual yogurt, juice, and today she chose a granola bar from the other regular options. 

Then the fainting began in earnest.  She fainted every time she stood up even to transfer from the dining room chair to the transfer chair.  What was most concerning to me was that after moving her in the transfer chair to her usual spot by the little table to watch television, she fainted.  She was sitting in the chair, had not gotten up and down, but was just sitting and went out cold. 

Orthostatic Hypotension is the blood vessels not constricting when a person stands up, allowing gravity to keep most of the blood in the lower part of the body, slowly reducing the blood flow to the brain.  She was just sitting down.  She had not gotten up. 

Of course, after she came out of that syncope, she insisted on standing up, and fainted every time.  I asked her if she wanted to lay down for a nap, but she was determined not to do that today. 

She decided that she wanted to get dressed.  I rolled her into the bedroom.  When she stood up, she fainted again. When she has fainted, sometimes when she comes around, her eyes shut tightly, her lips purse and she sort of twists her head to the side.  That usually means that she has shut down and can only lie down and nap.  This time I asked her again if she wanted to lie down, expecting either a yes or no answer.  She said no.  I asked if she wanted to get dressed.  She said yes.  She was determined.  I managed to get her transferred to the bed to begin the process of taking off her top to get dressed. 

She fainted again just sitting on the bed.  This time I just arranged her on the bed, covered her with the sheet and she stayed out and slept for a time.  She did not sleep quite as long as on other days, maybe an hour or hour and a half. 

When she woke up, she was better.  While she still fainted, she could stand up longer and did so more in accord with the pattern of previous days.  The rest of the day has continued the pattern of the last couple of weeks.  She was able to function.  As has been so recently, I could not really leave the room to speak of, since she continued to be in pop-up mode.  She could walk eight or ten feet, but then needed to sit down. 

The Cardiologist’s office called this morning to respond to my request about increasing the Midodrine, the medicine that raises her blood pressure to minimize the syncopes due to the Orthostatic Hypotension.  The suggestion was to increase each of the three doses in the day by 50%.  Instead of one pill, one pill, and then a half pill four hours apart, it could be increased to one and a half pills, one and a half pills and one pill four hours apart. 

Normally I would titrate the increase over a few days.  After this morning, I decided to make the full change right away.  The noon and suppertime doses have been increased.  Tomorrow morning that dose will be increased.  My hope is that this will move us back over the threshold to a more manageable pattern.  We live very close to the margins of functionality. 

We should know pretty soon if the change will take us back to the version of normal we were experiencing a couple of weeks ago.  We may have to adapt to a new normal.  We prefer the old normal to this new one that seems to be trying to emerge. 

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.

 

June 26, 2009

Caregiver needs Deck Therapy

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Almost done!  The four level waterfall needs only the one watt light fixtures that produce twenty watts of light at the base of each of the four levels.  They will be installed tomorrow.  

The plants are now all in place.  Brad even brought some from his own yard to put in an area above the lined portion, his gift to us.  His Dad has Parkinson’s and we have come to know his parents at the Parkinson’s Support Group meetings.  Brad has put forth extra effort at every turn.  The end result is more than Mary Ann and I could have hoped for. 

The Mallards are now in duck heaven – our back yard.  They were hanging out there last evening and came today five minutes after Brad and his crew left. 

I also hung out on the deck last evening listening to the waterfall as rain and thunder and lightening came through.   While it was raining I sat on the portion of the deck that is covered with a section of the roof.  The wind cooled the air so that the experience was wonderful. 

Mary Ann and I spent some time this morning on the deck before the day heated up.  I got her out to a lawn chair to sit for a while.  Then she got up and walked to the rail to get a better look at the waterfall.  As she started to faint, I tried to pull a chair over behind her.  It didn’t work.  I let her down to the deck.  As she lay there, I went into the house and got the transfer chair so that I would eventually be able to get her into the house.  During the morning, before, and then out on the deck she had had some small fainting spells.  The one at the rail was a substantial one, one that turns into a sort of siezure.  As usual, there was some intestinal activity that followed.  Some time I intend to ask our Gastroenterologist for an explanation of that phenomenon. 

Last night, the third in a row, Mary Ann had trouble settling down and getting to sleep.  As expected, the hallucinations have been a little more active the past few days.

The reason I titled this post “Caregiver needs Deck Therapy” is that today was a pop up day.  Most of the times I went out to talk with Brad and the crew about something, I very specifically asked Mary Ann to stay seated while I was outside.  Of course I made sure that she had ice water, the television was tuned to something she liked, and that she didn’t need to get to the bathroom.  For the most part she did as I asked during those times. 

Other than that, Mary Ann popped up every few minutes.  When I answered the phone or made a phone call, she was up.  When I went into the kitchen to put things in the dishwasher she popped up.  When I tried to get food ready for her she popped up.  When I went to the bathroom she popped up.  It seemed that pretty much every time I sat down she popped up. 

As I have shared many times, falling is a major issue.  The fact that this was also a fainting day made it even more challenging.  Last I heard, aspirating food and falling are the two most likely events to end the life of someone with Parkinson’s.  People don’t die of Parkinson’s itself.   Mary Ann was falling generally more than once a day until the torn stitches a few weeks ago.  Since then she has fallen very seldom, at least by the pre-stitch-tearing measure. 

I realized today the reason the falls have diminished so much.  I am moving very quickly to be right there whenever she stands up to walk.  I offer my elbow for her to hold, thereby stabilizing herself while walking, or I put my hand gently on the gait belt she always wears so that I can help her regain her equilibrium if she gets off balance.  The A-V monitor helps me anticipate her getting up so that I can be there by the time she is up. 

The challenge is that I can’t keep her in view every moment.  The monitor has to be plugged in and within view for me to use it.  I can’t move it with me every time I walk into the other room, head down the hall just for a moment, or go to the bathroom.  At the first sound of movement, I move as fast as I can, sometimes even managing to get this sixty-six year old body to run, to get where she is before she falls. 

Today, I must have jumped and run thirty or forty times.  That is only a guess; it may have been a thousand times!  While as her Caregiver I should just take that in stride, if every day were like today, I am not sure I could do it.  Not long ago I used the metaphor of a marionette whose strings were being pulled by someone else as a  way to describe the feelings of being a full time Caregiver.  That was the sensation today.  She popped up and my arms and legs moved. 

I needed some time on the deck this evening.  The residual heat from the day made it much less bearable than last evening.  That respite and this post are my way of settling down and allowing the frustration to dissipate.  I understand that Mary Ann’s popping up is not a malicious attempt at making my life difficult.  In her mind it has nothing to do with me.  It is my problem that I come running when she gets up.  I suppose, if that is what she is thinking, she is right.  Nonetheless, the truth is, I need to keep her from falling to the degree it is possible not only to keep her safe but to keep my life from becoming more difficult.  If she hurts herself, it hurts both of us.  And, yes, while in my most rational moments I recognize that the disease is the cause of this annoying behavior, sometimes it feels as if she doesn’t care what impact her actions have on me. 

Today is done.  There have been many good moments along with the frustrating ones.  I celebrate the new retreat center behind our house.  I suspect that there will be need for some Deck Therapy tomorrow.  Then there will be lights!

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.

 

June 20, 2009

Caregivers Sometimes feel Trapped

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , |
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I have been writing these posts with a certain bravado about our meeting the challenges and choosing to live with meaning, refusing to let the Parkinson’s rule.  As is often the case, saying it is far easier than doing it.

Every two or three months, I take up the shower mesh from the bathroom floor to scrub it with Lysol Cleaner.  We put the interlocking mesh squares on the bathroom floor to protect Mary Ann from experiencing serious damage from the ceramic tile floor if she falls.  An earlier post includes the gory details of the time she fell on that unprotected floor and ended up in the Emergency Room.

The mesh lets the water through so that what doesn’t run down to the drain dries fairly quickly.  The mesh is made of a pliable plastic material that is impregnated with some sort of mold resistance material.  It remains clean other than in some places having a thin layer of residual soap from multiple showers.  The scrubbing I do just makes me feel better about the cleanliness of that floor.

I was outside for a few minutes checking on the tiles drying in the sun on the driveway, talking with a neighbor.  When I went inside, Mary Ann was on the floor in the dining room. She was not hurt at all.  She could have been hurt, but was not.  In the process she had knocked over some coffee demanding some spot cleaning on the carpet.

With the addition of the video monitor, we have reduced the number of falls dramatically.  This relatively minor matter, the fall, reinforced that being out of sight of Mary Ann either by not being in the room with her or not having the monitor in sight is risky.

I struggle to write about being trapped by the Parkinson’s as a Caregiver when Mary Ann is trapped in her own body.  I have no right to feel sorry for myself when she has fought with her own body for over twenty-two years.  A number of years ago, I remember her saying through tears (she seldom cries) that she wished she could get a new body.

She is trapped in a more comprehensive way than I am.  She cannot get a Volunteer to come and give her a break from her own body.  She is trapped, and to a lesser extent, so am I.  The Parkinson’s has come to live with both of us and has become a constant presence in the lives of our Children and Grandchildren as well.

Speaking only from the vantage point of the Caregiver, at times I find it very frustrating that I cannot simply immerse myself in something that takes me out of visual contact with Mary Ann.

A few days ago, I needed to have a Volunteer with Mary Ann so that I could go out and clean the gutters.  The Volunteer had to leave before I finished.  There was at least one fall while I tried to complete the task.

The solution of having Mary Ann outside with me for anything I need to do is not as workable as it may sound.  Due to the Parkinson’s and medications, she does not handle heat well.  She does not enjoy just sitting outside.

Going outside to feed the birds has to be planned for when she is either early in a nap, when it is less likely she will need to get up, or in the first hour or so when she goes to bed.  After an hour or so there is more vulnerability to her needing to use the commode.  Watering the flowers is equally challenging.

Sometimes I just head out the door and walk up to the corner three houses away and look at the sky for a moment, check for nighthawks if it is dusk, or just enjoy the sunset for a few minutes.  There is sometimes a feeling of being tethered to Mary Ann and her needs.  On occasion as a full time Caregiver to someone who needs help to do most of the things she does, my movements are governed by her needs, almost like a marionette’s movements are controlled by the puppeteer.  She doesn’t want it any more than I do, but nonetheless, that is how it sometimes feels.

Gratefully, there are also lots of times when I feel good about being with Mary Ann, able to be close to her so much of the time after years of being away at work sixty to seventy hours a week.  I hope that Mary Ann feels good about my being here some of the time also.  She is not able to express such feelings, but hopefully, they are there.

With all of that said, Mary Ann and I are living lives of value and meaning with joyful times as well as frustrating times.  We are free to do what we are able to do when we are able to do it..  We are experiencing life fully, taking each day as it comes with the bad and the good — pretty much the same way any of us lives, no matter what our circumstances.

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.

 

June 12, 2009

Caregivers: Be Safe or Sorry

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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The extension ladder is old and not very stable.  The years of very little exercise have stiffened this sixty-six year old body so that moving up and down a ladder is not such an easy task any more. Lifting the ladder off the hooks in the garage tested my wheelchair lifting muscles.  Then there was the matter of moving the ladder every few minutes along the gutter so that I could climb up with my bucket, hook it on a rung and grab handfuls of smelly rotted little seeds from the neighbor’s trees.

I am not much of a ladder person.  Heights are just not my thing.  I suppose I am sort of acrophobic.  I don’t mind riding in an airplane, although recent news events may change my opinion on that.  On Youth trips to a beautiful camp fifty miles northwest of Colorado Springs called Lutheran Valley Retreat, I joined in the climb up Cedar Mountain.  I still remember my first time.  I was terrified.  As a pastor and counsellor on the trip, more than ten years older than the oldest of the Youth, I was too embarrassed to admit it.  The way I got through the climb that first year was to convince myself that if thirteen year old people could climb it, at thirty, I ought to be able to climb it.  I decided that in spite of my insides being less sure of it, I was safe.

Other than the year the lightning almost got us, I felt safe from then on.  After the first year I was a seasoned pro, climbing with bravado.  Still, if I am not completely confident that I am secure, heights are very unsettling to my insides.  I will not walk to the edge of a very tall building to look out windows if they are floor to ceiling.  Vertigo sets in.

As I was climbing up the ladder to clean out the gutters yesterday afternoon, the issue of my safety came to mind.  The ladder sometimes slipped at the top toward one side or the other as I climbed up.  I started thinking about what I would do if it fell, where I would land, what way to jump if it started going.  It was not a particularly scary thought to me, just a matter of fact analysis of the situation.

As I was analyzing the dynamics of falling, it popped into my mind that hurting myself would not just be a matter of getting fixed whatever broke, arm, shoulder, knee, or something worse.   What about Mary Ann.  She needs me to do the most basic daily tasks with her or for her. Hurting myself would hurt her.  She counts on me. If I were to do something stupid, our ability to maintain our little world would be gone, at least for a time.  She would certainly be mightily irritated with me.

The way I responded to that realization was to become very methodical about setting the feet of the ladder, making sure it was flat against the gutters.  I stepped up the ladder more slowly.  I caefully hung the bucket for the sludge.  Thinking about my responsibilty to Mary Ann as Caregiver translated to more care of myself.  

What happens to me is not just about me.  Those of you who have children are likely to have come to the realization that the choices you make do not just affect you.  Riding a bike without a helmet, ignoring the seat belt, driving twenty miles over the speed limit (under ten is okay, right?), smoking like a chimney, whatever puts you at a significant health risk is more than an issue of your freedom to do as you please.  It is no longer just about you. 

There is also a frustrating flip side to the matter of keeping safe for the sake of our care receiver.  What would be fair, if fairness were an option, is for the one for whom we are caring to have the same concern for keeping safe.  It would seem fair for the Care Receiver to avoid taking risks so that their Caregiver would not have an even tougher time trying to deal with the consequences of their risk-taking gone bad. 

I hesitate to bring this one up again, but it is one of the most difficult areas in our relationship as Care partners.  It seems that one of us in this partnership is intent on taking risks no matter how likely the risk is to produce more work for the Caregiver.   The truth is, there is no thoughtful intent to make work for the Caregiver by taking unnecessary risks.  The kind of thinking that would be needed for that intent is no longer available.  The risky actions are just the reflex actions of a mind and body with the simple need for the freedom to move at will and do the same things that have always been done.  There is no fully conscious awareness that the disease process has taken away some freedoms. 

Nonetheless, it is very difficult to watch a Loved One assert that independance without regard for the consequences to herself or her Caregiver.  It is just part of the reality within which we live now that Parkinson’s and Parkinson’s Disease Dementia have joined us in our journey.  Fairness is irrelevant to matter of safety. I need to keep myself safe so that I can continue to care for her.  She is free to do whatever she can no matter the risk. 

Nobody said life is fair.  If it was fair, she wouldn’t have to deal with the ravages of the Parkinson’s in the first place.  It is not fair, it just is.

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

 

May 30, 2009

Falls Steal Joy: Plans are hard to Make.

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , |
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As we look back on today, it will be remembered as a good day.  Instigated by a birthday gift, we went out a couple of days ago and bought lots and lots of plants, plus potting soil with fertilizer in it.  Yesterday we bought the trowel and hand cultivator to help us do the planting. 

Today we did round one of the planting.  It was a very hot day, so the sweat flowed freely from both of us.  Mary Ann was in an old lawn chair, one of four, that serve as our deck furniture.  (No, kids, we still haven’t gotten decent deck chairs.)  There was a steady shower of little brown seeds from the neighbor’s River Birches.  The air was full of them. 

My job was to do the planting in the large pots on the deck and an area just off the deck next to the chimney, the only shady spot we have.  It seemed to take forever just to get everything ready to go.  We had intended to do this planting for the last three days.  I was doing a bit of procrastinating, but the timing of the daytime long naps filled the times that seemed most appropriate for planting.  When the need for a nap comes, Mary Ann almost collapses into the bed and sleeps for two hours, sometimes two and a half.  It can happen up to twice a day. 

It was a big deal to finally actually get started on the task.  Plans had been frustrated for three days.  Today we got started.  It took a while to prepare the three containers on the deck.   I always asked Mary Ann what she wanted to put where as I planted.   She had had a nap earlier in the day, but she was still having a little trouble processing any questions about what to plant where.  I would end up just saying how about this, and she would answer, yes.  It is what is called the executive function of the brain that is the first to go with Parkinson’s Disease Dementia (a Lewy Body Dementia).  Things went pretty well as I got the containers filled with the plants. 

Then came the area next to the chimney.  Our kids had dug up the sod, put down landscaping fabric, covered the area with mulch, made a few holes in the fabric and put in some plants a couple of years ago. 

I headed to the garage to get a couple of rakes so that I could move the mulch to get on with the planting project.  All I did was walk from the back to the front of the house, into the garage, grabbed the rakes and headed around the house to the deck again.   Just as I was coming to the deck I heard the sound of her falling into the gate by the stairs to the lower area. 

As happens so often, when I was out of sight, she got up to do something, which she could not remember when I asked her afterward.  The falls are disturbing when in the house on the carpet.  On a wooden deck, against an open gate at the top of some steps was frightening.  My mind went immediately to the possibility of a trip to the Emergency Room. 

Gratefully, there was no damage to be found other than to our attempt at just enjoying a normal activity.  It was frustrating to me that it was the moment I was not there to help that she chose to stand up and walk.  It seemed impossible to continue doing what we had planned for so long and were enjoying doing.  The only safe thing seemed to be to go back inside where there was carpet and where with the monitor I could get to her quickly if she got up.  That decision would have stopped in midstream something we wanted to do, something that needed to be done soon if the plants were to survive.

I chose to continue the planting by the chimney.  Another time would be no better in terms of risk.  As I went on with the task, Mary Ann started to get up again.  I went up on to the deck and asked her what she was doing.  She wanted to see what I was doing.  The rail and the Air Conditioner condenser were blocking her view.  I helped her stand and asked her to hold on to the rail while I went back down to arrange a couple of plants so that she could approve their placement.  Before I went down, I pulled the lawn chair behind her so that she could sit right down if she needed to.  When I got to the plants by the chimney, I looked down at them for a moment and heard her fall into the lawn chair.  She had fainted.  I am grateful that she fell into the chair and did not go down on the deck again.  I ran up to her to hold her in the chair until she regained consciousness.

After that, she finally seemed convinced that she should not try to get up unaided again while on the deck.  I was able to finish the planting.  There is more to be done tomorrow in a couple of other areas.  We will manage somehow. 

Our version of normal includes the recognition that we may not be able to do anything we hoped to do, planned to do on a given day.  Yesterday, I had things in the car and was ready to take her to get something to eat, when the need to nap came on with a vengeance.   When that happens, she just slumps over in the transfer chair with her head on the arm or the table next to it. Today, the same thing happened shortly before we were to begin the planting.  It was delayed a couple of hours. 

Tonight I took a break three or four paragraphs ago to help her use the commode.  I saw on the monitor that she was moving.  When I got to the bedroom, she asked me to close the door because a mother and two children were outside the bedroom door.  Her eyes were wide open as she looked at what appeared very real to her.  Apparently the Thursday people (as she once called them) chose to come on Friday this week.  Of course there was no one there. 

As she got on the commode, she fainted and was out for many minutes.  Then I got her up from the commode, and just in trying to get bed clothes pulled back up, she fainted again.  Since the commode is right next to the bed (I pull it behind her to minimize the travel distance), I was able with much difficulty to shift her so that she was sitting on the bed.  After a bit, I helped her stand again to finish pulling up her PJ’s, and she fainted once more.  I finally just laid her on the bed and pulled them up as best I could, arranged her on the bed, her head on the pillow, covered her and now she is sleeping soundly.   

Our version of normal is not really very normal by most people’s standards.  But as the years have gone by, I have realized that there are very many whose normal is either like ours or much worse.  As I read the posts on the caregiving spouses of those with Lewy Body Dementia, I can put our situation into perspective.  We have a quality of life that many would envy. 

The falls tried but did not steal the joy from our day.  Plans are hard to make, but can be changed now that I am retired and make no commitments.  Our normal is very liveable in spite of its challenges.  The plants will grow (hopefully), and their will be flowers on the deck to enjoy for weeks to 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.

 

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