March 15, 2010

Dr. House Diagnosis is an Odd Coincidence

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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.

 

August 19, 2009

Visit to Neurologist Specializing in Parkinson’s

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Today was our semi-annual visit to the Neurologist at the KU Medical Center’s Movement Disorder’s Clinic.  Dr. Pahwa is a national level Neurologist specializing in Parkinson’s Disease.  We have struggled mightily with this disease every time we have not been seeing either Dr. Koller before him or Dr. Pahwa.  Geography and insurance interfered with access to KU Med for a number of years during the twenty-two since Mary Ann’s diagnosis.

We are pretty well convinced that we have the best care available.  That is both good news and bad news.  It is good news since we have access to the latest and most effective treatments.  The bad news is that there is not much else we can do to improve Mary Ann’s ability to function.   This is the best we can expect.

Today, we reviewed the medications.  We reported on the changes that have been made.  At Mary Ann’s request, we reduced the dosage of Sinamet, the primary medication that treats the motor symptoms of Parkinson’s.  It is the same medication that has been used for decades.  With all the promising research projects going on, and the various news stories touting a potential cure, not much has changed since the middle of the last century in treating Parkinson’s.

The benefit of reducing the medication is that it has lots of side effects.  Since reducing the dosage Mary Ann has had fewer and less intense hot flashes that are shorter in duration.  There is a little less of the dyskinetic movements (as seen in Michael J. Fox) during the day.  Dr. Pahwa confirmed that change to be appropriate.  That is a medication that often is left to the patient to determine how much is taken.  Those changes are done within the range acceptable to the Neurologist.

I reported the increase in the Midodrine to keep Mary Ann’s blood pressure high enough to reduce the fainting spells (Orhostatic Hypotension) to a more manageable level of intensity and frequency.  The change in that medication was done in consultation with our Cardiologist, who prescribed the Midodrine.

We talked about the increase in hallucinations and their interference with sleeping.  As expected, he suggested a small increase in a medication called Seroquel.  He reminded us that one problem with increasing the Seroquel is that it can make the blood pressure problem worse.  Again, we are riding on a tiny margin between side effects battling one another.  We are in hopes that the contest will end in a draw.

I made the mistake of mentioning something about the online Lewy Body Dementia spouses’ group and information about the Autonomic Nervous System I researched on the Internet.  I can only guess that he is frustrated with Patients and Caregivers who second-guess his recommendations based on the often bad information.  I just made the observation that in looking up what the Parasympathetic side of the Autonomic Nervous system governs, the list included pretty much every area in which Mary Ann has a problem.  He was not rude, nor did he say anything much in response.  He just moved on to closure of the appointment.

I trust his knowledge and experience.  I just recognize that the more we know about the disease, the better we can do at dealing with multiple doctors and the more likely we are to make good decisions by actually understanding the options and their implications. That knowledge has been especially helpful when Mary Ann has gone to the Emergency Room and/or has been hospitalized.  The medical professionals there deal with such a variety of problems that they can’t possibly keep up on the details of all of the various diseases.

The next appointment is six months from now.  We will see if the increase in Seroquel has a positive effect.  Dr. Pahwa is willing to increase the dosage more if this does not work.  He increased the dosage from 100mg to 125mg.  He suggested that we move to 150mg if the smaller increase doesn’t move the hallucinations back to a level that does not interfere with sleep.  That decision is in our hands.

At the moment, we seem to have the best of what is available to deal with the Parkinson’s and the Dementia.  While we would like to have a better quality of life, our job is to make the best of what we have.

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 28, 2009

A Record: No Falls for Twenty-Two Days!

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It finally happened this morning.  I went to the kitchen just for a moment.  Then came the usual thump.  She was down.  The last time she fell, we had to go back to the Dermatologist to re-sew a two inch row of stitches, actually two rows, one deep in the wound and one pulling the surface of the skin together.  She had fallen directly on the wound and had broken the stitches.  The Plavix thinned blood ran freely.

It was just the other day that it dawned on me that we were then almost three weeks out from that drama, and there had not yet been another fall.  To appreciate the significance of that record, you need to know that Mary Ann has fallen multiple times a day, up to a dozen, in the recent past.  Up to that last disastrous fall, the pattern had been that falls came daily, sometimes two or three times.  On occasion there would be a day or two without a fall, but that was rare.

Mary Ann falls for a variety of reasons.  One of them is a symptom of Parkinson’s.  In fact it was one of the central symptoms that took her to the doctor when we first suspected that there was something wrong late in 1986.  She had pain and tight muscles in her left shoulder.  She had pain and stiffness in her left hand.  She would on occasion lose her balance and roll to the ground.  Maybe five years before that, we went on a couple of three day long church ski trips with other famiilies.  Mary Ann struggled especially with getting off the lift.  She always fell and had very much trouble getting up.  Finally, she just chose to stay in the lodge while we skiied.  Little did we know that a few years later the diagnosis of Parkinson’s would come.

That particular symptom of Parkinson’s cannot be corrected with a pill.  Physical therapy can help, but other than that there is no medicine that restores the balance.

A central symptom of the particular expression of Parkinson’s with which Mary Ann has been diagnosed is called bradykinesia.  Wikipedia has a good definition of bradykinesia: “Slowed ability to start and continue movements, and impaired ability to adjust the body’s position.”  When Mary Ann tries to start moving, the top part of her body may move forward while her feet refuse to move. Of course, when that happens, she falls unless there is an arm or a walker supporting her.

She seldom tries to use a walker any more.  She doesn’t have the physical strength to move it ahead of her.  When she did use it, she would often lean forward, body moving and feet cemented to the floor, leaving her in a very precarious position, hanging on to the walker for dear life.

With bradykinesia, a soft carpet may as well be wet cement.  Her feet just won’t move.  We have replaced all the carpet in the house with a short-knapped berber that is firm enough that she can move her feet (and we can roll the transfer chair), but soft enough to cushion her falls.  Most falls still leave a rug burn or a bruise or both.

When Mary Ann gets out of her transfer chair and tries to turn to walk around it, falls often happen.  When she tries to pick up something from the floor (now it may be something that is not actually there) she is, of course, vulnerable to falling over.

Since her stroke and the addition of the Parkinson’s Disease Dementia, a Lewy Body Dementia, Mary Ann has had some spatial perception problems.  Getting the utensil where she intends it to be when eating is a problem now.  When she is walking, sometimes she just does not perceive accurately where things are so that she can move her feet around them rather than trip over them.

In the last few years the Orthostatic Hypotension has been added to the mix.  That is a term that refers to the body’s inability to constrict the blood vessels fast enough to raise a person’s blood pressure to counteract gravity when standing up.  An adequate supply of blood is not pumped to the brain.  The result is called syncope, a fancy word for fainting.  It is not hard to figure out what happens next.  When people faint, they fall.

The time not so long ago when Mary Ann was falling up to a dozen times a day, it was the fainting that caused the increase.  She now takes medicine (Midodrine) to raise her blood pressure.  The medicine has helped some, but it has not eliminated the problem.  In fact the high blood pressure is taking a toll on her heart and her kidneys. There are often trade-offs that need to be made to maintain a reasonable quality of life.

Maybe now you can understand just why it was such a monumental accomplishment to make it twenty-two days without falling.  I am not completely certain why we managed to avoid falling for so long, but there are some things that seem to have potential for helping reduce the falls.

One thing is that Mary Ann’s last fall was pretty traumatic.  She has fallen hundreds of times and rarely done much damage to herself.  This time there was damage.  The return trip to the Dermatologist to be sewn up again was no picnic.  Mary Ann’s automatic pilot may have been reset to reduce her inclination to put herself at risk for falling.

Another thing has been my increased commitment to getting to her before she has a chance to fall.  I now spend less time in another room unable to see her.  I move more quickly when I suspect she might be on the move.

Since that last major fall, I have obtained the audio-visual monitor that allows me to see as well as hear her when she is lying in bed or sitting in her chair and I am at the computer.  I am now able to anticipate her getting up and heading out.  I can see her shifting or leaning forward, about to get up.  I am able to be there and help her before she falls rather than waiting for the thump and running to pick her up.

One recent change that may be having some sort of subtle impact on her stability is the new medication she is taking, the Exelon Patch.  It is intended to help with memory and alertness. To my knowledge it is not supposed to have any impact on the motor symptoms.  While I can’t put my finger on any identifiable dramatic change since she has been using it, she does seem to be doing better in most areas of functionality.  Since we live on a roller coaster of symptoms that come and go, sometimes very quickly, most of the time there is no clear reason for declines or improvements in Mary Ann’s ability to function well. There is no telling for sure how much, if any, impact the patch is having.

In the matter of this morning’s fall, Mary Ann, as is usually the case, did not hurt herself.  I still contend she could lead workshops on how to fall without hurting yourself.  I was upset that it happened, but no one can prevent the falls completely. As a full time Caregiver, I have to accept that. Most of all, I am still celebrating twenty-two days without a fall. Of course any decent celebration requires ice cream.  Two Pecan Cluster Blizzards from Dairy Queen beats a champagne toast any day.

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

 

May 22, 2009

Meds: Can’t live with them; can’t live without them.

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Count them, twelve prescriptions and three over the counter medicines make up Mary Ann’s daily regimen.  That translates into Mary Ann consuming twenty-one doses of that collection of meds most days. 

One medication is not supposed to be taken with food.  Another that is taken five times a day at two hour intervals, alternating between one half and one full pill, should not be taken with protein.  Another prescription is to be taken every four hours, a whole pill for the first two doses and a half pill for the last.  It is not to be taken too late in the day or if she is going to lie down for a nap (a need that comes without warning).  One pill is taken half in the morning and half at night.  Another is kept in her purse at all times to be used only if there is chest pain that is not diminished by taking a Tums, suggesting that it might be her heart.  She has to lie down to take it so that she doesn’t faint.  One over the counter med is to be mixed with juice or water and taken Tuesday, Thursday, Saturday and Sunday. 

One prescription is intended to raise her blood pressure so that she doesn’t faint.  Another prescription is intended to lower her blood pressure and help control heart pain. 

One prescription, when she first took it immediately after diagnosis, helped her keep movement, rather than freezing up.  It ceased to be helpful after about three years.  After a decade or so hiatus, it was added again to help diminish the extra movements produced as a side effect of the main medicine she takes to keep from freezing up completely.  Those extra movements are what Michael J. Fox often presents.  They are called dyskinetic movements, or dyskinesias. 

Side effects of the two meds that treat the movement disorder aspect of Parkinson’s increase the susceptibility to hallucinations.   The disease process itself of the Parkinson’s and Parkinson’s Disease Dementia produce hallucinations.  That means there is also a prescription to help diminish the hallucinations.  That is a medicine which can produce a fatal side effect in the elderly.  You tell me just how old we have to be to qualify for that side effect.

The brain chemistry of Parkinson’s produces depression.  Wouldn’t a person with Parkinson’s have to be crazy not to be depressed once in a while?  There are some prescriptions to help with that chemical imbalance.  The side effect of one is to make Mary Ann sleepy, but some of the others make her restless. There is something added to help her sleep. 

Two of the meds thin her blood and help reduce the likelihood of her having another stroke.  The lesion on her carotid artery has a rough surface — not a good thing.  The list of side effects of most of her medicines includes the matter of dizziness when standing up.   That means they interfere with her autonomic nervous system, reducing her body’s ability to adjust her blood pressure quickly enough when she stands up.  The disease process of the Parkinson’s and Dementia are complicit in that nastiness.  The result of the low blood pressure is that she faints, increasing the likelihood of hitting her head and having another stroke or breaking the skin and producing a major bleed. 

The newest prescription is a patch to be put on her back daily.  It is intended to help her memory and alertness.  It’s main side effect is vomiting.  I can hardly wait!  One additional side effect can be diarrhea, but then listed among the side effects of most of the rest of the meds is constipation.  She, of course, takes a couple of over the counter meds to counteract the constipation.   

I could go on!

Every Saturday my to do list includes filling the pill container, four compartments for each of the seven days.  Mary Ann used to do that for herself.  There was a time when she had even more prescriptions and multiple doses of some of them.  When she was having trouble getting them all organized and in their spots without missing some, she devised a numbering system for the bottles.  By the way, the numbers go up to eighteen, seven more than she has now.  The job of filling the compartments is now mine, but I still use her system.  I have to follow a meticulous routine with bottles set out in certain places on the table if there will be any hope of my getting the job done accurately. 

Once all the compartments are filled, we are ready for the week.  Each morning, one of the day’s containers is snapped out of the holder.  The pills must be distributed into the pill cup for the morning pills, taken with yogurt (with active cultures), juice and maybe cereal.  Pills from the other compartments are transferred into two pill boxes with timers, one set for two hours and the other set for four hours.   The timers beep at ten minutes, five minutes and three minutes before beeping for a full minute to tell us the time has come to take the pill.  It is a miracle that I haven’t thrown then on he floor and stomped on them to stop the endless beeping.  The bed time meds are left for another cup to be set out at the end of the day. 

Do I even need to tell you what the frightening error was that I made one dreary morning a few years ago?  I was sleepy.  I got Mary Ann to the table and filled the morning pill cup — with the night time pills!!!!!  It wasn’t until she was pretty much out of it and back in bed that I discovered what I had done.  I called the Pharmacist and we worked through the implications and what to do.  Gratefully, the doses were all low enough that no damage was done.  After that experience, I now make sure that all the lights are on, my glasses are on, I look at the pill container three or four times, and Mary Ann always counts the pills and examines them carefully before she takes them. 

Every once in a while, someone asks me what I am doing now that I am retired.  After they regain consciousness from my having whacked them up side the head, I explain gently that Caregiving is a full time job. 

The pills are a wonderful gift.  They have helped provide a quality of life we could not enjoy without them.  It is tough to live with them, but we can’t live without them. 

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 5, 2009

Hot Flashes come with Parkinson’s Disease

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I just closed the back door, the window in the dining room, the front door, the garage door, and the door between the house and the garage.  From late fall through early spring, this is pretty much a daily routine.  Yes, even in the dead of winter (which is not all that big a deal in Kansas), the doors and windows are opened each evening around supper time. 

During the first fifteen years of Mary Ann’s Parkinson’s diagnosis, no one told us about the hot flashes.  When I asked about them, there was only a blank stare.  Mary Ann went through all the usual hormone treatments — multiple doses.  Nothing worked.  Finally, she stopped taking any hormone therapy.  It just made no difference. 

Finally in just the last few years we have heard sweats listed among the non-motor symptoms of Parkinson’s.  After a time of feeling irritated that no one had mentioned it before and lamenting all the misguided efforts at trying to treat them, we were relieved to just to know that it is part of the Parkinson’s gifts to Mary Ann.  They are no easier for her to endure, but at least we are no longer wasting our time looking in all the wrong places, trying to find some elusive solution to the problem.

I had heard about hot flashes long before the Parkinson’s.  Since Mary Ann was diagnosed so early in life (45), she went through the normal menopausal hot flashes.  The hot flashes, the sweats, continued long after menopause had completed its transition.  They have never ceased.  As I have felt the heat and changed soaked clothes and wiped the sweat running down her neck, I have come to recognize hot flashes to be much more than a minor inconvenience.  When they come in full intensity, Mary Ann looks as if she will burst into flames any moment.  She radiates heat that can be felt from inches away, as if she were some sort of biological space heater. 

There was a time in the progression of the Parkinson’s when if we had been asked, we would have responded that the hot flashes were the hardest part of the disease to endure.   

When the almost daily hot flashes come on, I need to respond quickly.  If Mary Ann happens to have on a long-sleeved top, it must come off immediately.  She is usually dyskinetic at the time, so changing clothes is no small matter.  Arms and legs are twisting this way and that.  After clothes are changed, the back door, the windows, the front door, the door to the garage and the garage door must be thrown open.  The colder and windier it is outside, the better.  Sometimes I get a wet wash cloth to put on the back of her neck.  Occasionally, she has ended up in the shower trying to cool down. 

As you might guess, summers in Kansas can be pretty tough at hot flash time.  I recognize that the general wisdom is to keep the thermostat no lower than 76 degrees when the AC is on, preferably 78 or 80.  Ours has to go down to about 72 until it feels like a refrigerator when the hot flashes kick in.  The AC works far too slowly to give much relief.  Eventually, either that round of sweats ends or the AC takes the edge off so that it is at least bearable.  Oddly, at other times, Mary Ann can be very cold, hands frigid. 

As a Caregiver, not only do I need to be ready to move quickly to cool her down when the hot flashes come, I need to have nearby appropriate layers for myself.  When it is in the twenties outside with a wind chill in the teens, I need to add layers to keep warm. 

Some of our most harrowing moments have been times that a hot flash has hit while we were driving.   While traveling the Interstate at 75mph (maybe a little more) trying to reach the passenger seat in a van with front seats separated by a console, to take a jacket off a seatbelted passenger who is broiling in her own sweat is a terrifying experience. 

It is not only Parkinsonians who have to deal with the sweats.  Many of those who are in the Spouses of those with Lewy Body Dementia online group talk about the sweats, asking if anyone has found some way to control them.  To my knowledge, no one has come up with a solution, even by asking his/her Neurologist.  

The sweats, the hot flashes, are just part of the deal.   They come after the Parkinson’s has been with the family for some years.  As far as I know, no one has pinned down the specific cause of the hot flashes.  Very many of the problems that come with Parkinson’s Disease, Parkinson’s Disease Dementia and Lewy Body Dementia do not reveal their etiology, they are reluctant to tell the story of their origins.  So many of the most troubling problems have their roots in both the disease and the medications used to treat the disease. 

Even the most expert in Parkinson’s Disease will admit that many of the motor and non-motor symptoms seem to emerge from some elusive combination of the disease process and long term side effects of the medications.  Without knowing a very specific cause, it is pretty much impossible to find a treatment to control those symptoms. 

As with so many of the troublesome additions Parkinson’s has brought into our lives, the sweats, the hot flashes are here to stay.  They refuse to be diminished by any treatment.  We are left to adapt the environment to accommodate their presence.  So, we open doors and windows when that will work, and we turn the AC down when outside air seems hot enough to initiate combustion. 

Hot flashes or sweats often do come at some point in the progression of Parkinson’s Disease.  Somehow knowing that to be so makes it easier to accept them and spend the limited time and energy we have figuring out how to adapt our environment quickly to diminish the discomfort those hot flashes 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.

 

March 15, 2009

Role Changes in Caregiving

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I did it again yesterday, “do you want a sandwich, leftover casserole or scrambled eggs.”   Wouldn’t you know, this time, without having to use the “yes or no” question approach, she answered “scrambled eggs.”  Why did I even mention it.  Not only that, she asked if we  had bacon.  To my dismay, we did.  Then there was the raisin bread, toasted, buttered and topped with cinnamon sugar. 

I understand just how ridiculous it is to dread such a simple task — but it all needs to be done at the same time so that it can all be served hot.  Not only that, when it is done, there is at least one pan to be cleaned.  I don’t know about yours, but our automatic dishwasher will just harden cooked-on egg to be eaten with whatever is cooked next in that pan — hand washed — it needs to be hand washed — scrubbed with the little scrubby thing. 

This is not man’s work!  Before you get your nose bent out of joint (do noses have joints?), I understand that there really isn’t man’s work and woman’s work (other than the thing with the babies).  There are differences, for which we are all very grateful, but anyone can cook or wash clothes or mow the lawn or clean the house or change the oil on the car (if they can still find the place to put the oil in with all the stuff now to be found under the hood). 

It was not so when I was growing up.  If Dad wanted a cup of coffee and happened to realize it while standing in the kitchen next to the coffee pot, he would ask Mom who was sitting out in the living room to get him a cup.  She would do it!!  She knew just how much cream and sugar to put in.  By the time it was ready, he would be sitting in the living room, waiting to be served. 

He was a good man.  He was not harsh or demanding.  He took care of the car and the plumbing and the household repairs.  He mowed the lawn, planted a beautiful garden of flowers.  He grew vegetables by the acre when we got the land in the country.  It was just clear who did what. 

By the way, Mary Ann would most certainly never have gotten me that cup of coffee.  I shudder to think where it would have ended up if I asked.  She was hardly shy and retiring and certainly no domestic goddess.  But she grew up in the same era in which I grew up.  Our roles were pretty traditional.  I was the boss of the car and the outside stuff, and she was the boss of everything else.  If there is any doubt who was the boss, I rest my case with this piece of evidence: She ruled the remote control.  Enough said?

When Parkinson’s joined our family, things began to change.  By about a half dozen years into our new family configuration, with Mary Ann working almost full time to help get the kids through college, there was not enough stamina for her to go to work each day and come home to domestic chores. 

Roles changed.  I began to include some vacuuming, and clothes washing and bathroom cleaning.  I know full well how silly it sounds to say that as if it is some sort of a noble thing to have done.  Of course we should share duties as spouses, no matter our circumstances.  As time went by, Mary Ann was less able to do any of the household tasks, inside or outside.  I have come to have profound respect for single parents who must work full time to survive, deal with inside maintenance, outside maintenance, all the while filling the needs of little ones who are full of needs all the time.  I am in awe of those who have lost a spouse and must take care of everything while battling that deep and relentless loneliness that so often washes over them. 

As Mary Ann will say whenever the topic of cooking comes up “they won’t let me in the kitchen any more.”  You can guess who “they” is.  You don’t know real fear until you have seen someone whose arms and legs are waving this way and that, uncontrollably, while holding recently sharped Cutco knives.  The Parkinson’s meds produce those movements as side effects after years of taking those meds. 

While it is irrationally fearful to us, many Caregivers struggle to do the tasks our Loved Ones did before the chronic disease.  If  you have never paid the bills, or balanced the checkbook or used online banking, or entered checks in Quicken, it can be terrifying to do so.  If you haven’t learned what ingredients go with what, how long things cook, how to tell when they are done, how much salt or garlic powder or cumin or soy sauce goes with what quantity of rice or vegetables or meat, just throwing a meal together is a formidable task — give me Mount Everest, I’ll climb that, you fix dinner. 

Again, I suppose this sounds silly to those of you who can fix a toilet and cook a meal.  When it is just you, filling all the needs of someone who desparately needs you to do so, and trying to do everything that the two of you used to do, yes, when you are a woman doing man’s work or a man doing woman’s work, when you are doing it all, sometimes the smallest task seems hopelessly impossible.

One solution to the dilemma is to let go of whatever illusions may remain about what tasks belong to whom.  The tasks have no gender.   They are just things that need to be done.  Very ordinary people, just like you and me can learn to do any of them.  We actually can learn to do some of those seemingly impossible jobs.  Some of them don’t need to be done.  We just think they do because they always have been in the past, or others might judge us if we don’t do them.  We can dare to ask for help doing some of them.  We can use some of our limited resources to pay someone else to do them.  Our survival, our sanity, our need for some quality of life is worth it. 

Can you believe this all started over some scrambled eggs, microwaved bacon and a piece of toast?  Tonight I made stir-fried pork, vegetables and rice.  Who knew I could do it???  (Please do not invite me to a Pampered Chef party — unless, of course, it is held in the tool section of Home Depot.)