April 2009


It has been some time since Mary Ann has told me she was seeing the two parents and two children in the house. I thought that hallucination had subsided with the last increase in the dosage of a medicine intended to control the hallucinations (Seroquel).  Today she told me that she wished that the Thursday people would stop coming.  I asked and she confimed that she was talking about the family she sees sometimes at our house.  I asked if she was scared of them.  The Neurologist always asks if the hallucinations are scary.  She answered, “I just wish they would go home.”

We returned from our vacation last Friday evening.  It is now Wednesday, and the hallucinations, the daytime napping, the fainting, the confusion that often comes during recuperation from travel are still continuing.  The recuperation this time seems to be taking longer than in the past.

With Parkinson’s Disease Dementia (a Lewy Body Dementia), people can move quickly and dramatically from a time of confusion and all the rest of the increased symptoms, to a time of crystal clear thinking.  What is always uncertain when symptoms increase is if the person will return to the normal that preceded the episode or stay at the new place, settling into a new normal.

What has often happened in the past is that when I have reached the point of concluding that she has declined to a new level, have emailed the kids and maybe our extended family and friends, reporting the decline, the next day, she has rallied and returned to clarity of thinking, the former alertness and the capacity to stay up most of the day.

Maybe tomorrow will be a better day, but maybe it won’t.  One of the fears of this and other Caregivers is that they have witnessed a permanent move to a lower level of functionality, another sign of the disease heading farther along the path toward its ultimate conclusion   One of the signs of the progression of the Dementia is daytime sleeping.  Some reach a point of seldom being awake.

The fears that come with Caregiving are legion.  What follows is a litany of some of those fears in no particular order:

Sometimes when Mary Ann’s Parkinson’s medicine kicks in, she breathes heavily and the breathing sounds labored.  Arms and legs are waving.  Often she has a hot flash at the same time with sweat poring off her.  It seems as if she is just going to explode.  It seems impossible that her heart can take it.  Sometimes when she walks ten or twenty feet the labored breathing starts.  I am afraid a clot will break loose from a heart blockage and she will be gone in minutes.

Whenever we are in a place that has tables or desks with sharp corners, having seen her fall countless numbers of times, I fear that she will get up and head off quickly, lose her balance or faint and hit her head.  She has fallen and hit her head.  We have had trips to the Emergency Room.  The fear is justified.  We have removed almost everything in out home that she could fall on and do serious damage.

She has had one stroke already.  She could at any time  have another.  There is a lesion on with a rough place on it in one of her carotid arteries.  The next fall could be her last.

When she is in a deep sleep and has not moved for a long period of time, I will look closely to make sure I can see some movement indicating that she is still breathing.

There is the fear that the time is likely to come when I cannot care for her at home.  Each decline brings that potentiality closer.  The thought of a nursing home, even a nice one, is intolerable.  I respond to her every need.  I can read her non-verbals.  I know the way she thinks.  No one else is going to give her the constant attention she deserves.  I have great respect for those who work with the aged and infirmed.  It is still a harsh reality that there are too few caring for too many, especially at night.

Then there is the strain on the Caregiver who travels back and forth to the Nursing Home, some spending most of every day there with their Loved One.  I have read posts written by many who are completely worn out by the demands of attending to their Loved One in a Nursing Home.

There are fears about the financial drain of Caregiving.  If there is to be long term care (try getting long term careinsurance for someone diagnosed with Parkinson’s at age forty-five), the division of assets demands drawing down a life savings.

Caregivers fear getting hurt.  If I end up in the hospital for any reason, what will happen to Mary Ann?  When the ambulance with me inside it leaves the house, who will take care of Mary Ann.

What will happen to her if I die first?  Years ago when there was some misinformation that suggested my heart was about to give out, I remember coming to a very peaceful acceptance that my life has been filled with meaning and purpose and good relationships, my children have grown to be better people than I could ever have hoped (there were no grandchildren yet when this happened), my faith is strong and secure.  It would be okay whatever happened.  As a Caregiver, the fear is not so much a fear of death but the impact of that death on others,  In my case, it is Mary Ann. It is the impact her needs would have on our children.

Then there is the selfish fear.  If she goes first, what will I do without her.  I fell in love with her in the summer of 1962.  You do the math.  In terms of human relationships, she has been the center of my world for all those years.  Our marriage has been far from perfect, but we have hung in there with one another and would prefer continuing doing to do so.

Caregivers have fears!  We can pretend otherwise, deny them, ignore them, or accept them.  We can be destroyed by them or live well in spite of them.  Which we do is a choice we make.  What makes sense to me is to look at the object of the fear and make plans for what we fear becoming a reality.  Do what we have the power to do in preparation for each contingency, and then get on with life.

The truth is that we all have fears, no matter what our circumstances are.  Each of us must choose how we will live.  Will it be with terror or with peace in our hearts?

For me it is a quiet trust in a Someone whom I believe to have constructed me and sustained me that allows me to live in peace.  The peace is a gift from that Someone.  I don’t deny that I am sometimes afraid.  It is just that the fear does not define me and rule my life.  I choose the peace.

For Caregivers who do not look to someone outside themselves for peace, peace can still be found.  Facing the fear, stepping back from it, doing what you have the power to do and recognizing the limits of your power free you to settle back into the life-generating core of your being.  It is a sort of reality therapy that provides healing.

Caregivers’ fears are legion.  They are rational fears.  What they fear may happen, may happen.  Even in the face of their fears, Caregivers are free to choose peace.

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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I just finished a piece of wonderfully decadent chocolate pie.  Life is good!

For a few months we are providing a place to stay for the Pastor who is now the Senior Pastor at the Congregation from which I retired nine months ago.  His children are finishing the school year before the family moves to town.  The Congregation is bringing a meal a couple of times a week so that he can have real food once in a while.  Cooking is not one of my gifts. What a treat it has been to greet people at the door, loaded down with containers of nourishing food, providing an entire meal including dessert!

What was the norm for meals before he arrived, and what will be the norm again when he and his family settle into the home they have found here, is not so lavish and nourishing.  On a good day, there may be a relatively nourishing full meal.  A good day does not usually come more than once or twice in a week.  I like vegetables, and I can steam broccoli and will do the same with the freshly picked asparagus I hope to find at a local country market in the next few days.

The reality is that our normal does not include daily home cooked meals, far from it.  There are some dynamics in our pattern of living that do not make healthful eating an easy thing to do.  I suppose that Caregivers who have had food preparation as an element of their portfolio prior to the addition of the chronic illness to the family, do a good job of providing regular.  Cooking was not part of my portfolio.

Among the dynamics of caregiving that works against eating regular, balanced and nourishing meals, is the impact the chronic disease has on the appetite of the one receiving the care.  In the case of Parkinson’s Disease and Lewy Body Dementia, one of the early signs is the loss of the sense of smell and taste.  I have in the past asked Mary Ann how she determines what she likes and dislikes since from long before she was diagnosed with Parkinson’s those senses had diminished.  I don’t know exactly how she answered, but my memory of what she said is that there are some flavors she can pick up, then there are textures and visual cues and just a general awareness of what she likes and dislikes.

One thing that many of the Lewy Body Dementia Spuoses online group say is that their Loved Ones like ice cream.  One said that a health professional told her that the taste buds that sense sweetness are the last to go.  Mary Ann could easily eat two large servings of ice cream a day if it was available.  I need to add quickly, that when I was growing up, at least during the summer months, I remember my parents and I heading to the Oatman Dairy for hot fudge sundaes (topped wtih salted pecans) pretty much every evening.  My taste for ice cream is legendary among those who know me.  Don’t start a conversation with me about ice cream unless you have a substantial amount of time to give to that conversation.

Here is one of the problems Caregivers have in their attempt at healthy eating and weight control.  It is the needs of the one for whom they are caring that take priority.  Especially when there is some level of dementia in the picture, food issues emerge.  Just finding foods that are acceptable is no simple matter. The house ends up filled with what the one affected by the disease will eat.

Sometimes there are diet restrictions placed on the one with the chronic or progressive disease.  He/she may have diabetes or heart disease added to the primary illness.  It would seem then that it would be easy to maintain good eating habits.  Not so!  When your Loved One is suffering from some sort of major debilitating disease that steals them much of what brings them joy, how can they be denied a few simple pleasures.  If Mary Ann likes ice cream, that is what she gets.  The ice cream may be a couple of scoops from Baskin – Robbins, or a Sheridan’s Concrete, or a Turtle Sundae at G’s Frozen Custard, or a Dairy Queen Blizzard, or a Pecan Caramel Fudge Sundae at the Braum’s Dairy an hour away.  She likes Glory Days’ Pizza.  She gets a couple of slices of all meat pizza once a week, providing her with two meals.  She likes burgers and fries and KFC and Long John Silver’s and Steak and Shake and a Steak Burger and Cheese from the Classic Bean. She loves sweet jello dishes with cool whip and sour cream or cottage cheese.  She likes bratwurst and sour kraut and beef and potatoes and pork roast and chops.  Lunch at home almost always includes handfuls of Fritos and a regular Pepsi.

Yes, she has heart issues and should not be eating red meat or anything with cholesterol.  Yes, she has had congestive heart failure suggesting a diet low in sodium.  But she also has Orthostatic Hypotension (low blood pressure episodes) that is controlled better when fluid is retained allowing blood pressure to remain at a higher level.  Salt provides that fluid retention.

After weeks or months or years of trying to negotiate the mine field of evil foods, after fighting endless battles on what should and shouldn’t be eaten, this Caregiver, and most with whom I interact have concluded that there is more to be lost than gained by continuing the battles.  What is the point of denying someone simple pleasures just to add some more years to avoid those simple pleasures.

One thing that militates against a Caregiver eating a healthy diet is that the house is filled with food that is not helpful to maintaining a good balanced diet.  Of course the presence of that evil food does not force the Caregiver to eat it!  Isn’t the obvious solution simply to have healthful foods in the house to eat as well as the evil foods?  It may be the obvious solution to the problem, but it doen’t work.

The real culprit that sabotages efforts at healthy eating is the stress that comes with the task of living on a roller coaster going at breakneck speed completely out of control.  Food is the drug of choice for Caregivers.  We may not be able to stop the roller coaster, but we can head for the kitchen and eat a bowl of ice cream followed by a handful (or two) of cheddar cheese flavored Sun Chips.  We can slather the back of a a couple frozen cookies spoonfulls of Nutella.  We can eat a heaping spoon of chunky peanut butter dipped in a dish of chocolate chips.  Caregivers’penchant for late nights provides plenty of time for more than one foray into the kitchen. If we can’t stop the roller coaster, at least we can treat ourselves while we ride.

This is where suggestions for solutions to the problem usually come in these posts.  If I had a solution to this one, I wouldn’t have 165 pounds hanging on a frame built for 145.  I guess I need to watch Oprah while I eat my afternoon snack.

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.

“Let me do it for you, Mary Ann, we are running out of time.”   “I’ll take that to the kitchen for you. ”  “What are you getting up to get?  I’ll get it for you.”

Someone made the comment to me that when Caregiver’s take over full time care of their Loved One, the Loved One’s ability to take care of him/herself tends to decline.  I don’t remember who said it.  I don’t know if the person who said it had any formal knowledge to validate the comment.  I just know that my own experience seems to allow the possibility that the observation was correct.

I feel responsible for Mary Ann’s well-being.  I am taking care of her.  I need to do for her what she cannot do for herself.  I am here to determine what she needs and wants and then see to it that she gets it.  She is virtually helpless to do even the most basic things.  I am her arms and legs.   My job is to figure out what she wants or needs when she is having trouble figuring that out for herself.  She has a right to have the highest quality of life that the Parkinson’s will allow. 

Caregivers are committed to take care of their Loved Ones.  The question is, can they do too much for their Loved Ones and do more harm than good in the process?  In other arenas, the term for helping too much is “enabling.”  Is it possible that in all our good intentions we may very well be doing less good than we thought? 

A less comfortable question is, do we sometimes take over tasks from our Loved Ones more for our own sake than their sake?  Are some of our generous acts of service rooted more in our impatience than their need?

Those are very tough questions quite reluctant to produce easy answers.  Mary Ann would love to be back in the kitchen.  There are knives there, very sharp knives.  The Cutco knives she purchased from a traveling salesman some time before we were married forty-three years ago, have recently been sent back to the company for sharpening.  A broken blade was replaced, as were the handles, and they were honed until razor sharp.   (By the way, all that was done only for the cost of shipping — the salesman was not lying.)  Those knives could cut to the bone in a fraction of a second.  When Mary Ann’s basic Parkinson’s medication kicks in, she has dramatic dyskinetic movements, arms waving around with involuntary muscle activity.  She falls easily.  Armed with knives she could easily do major damage to herself and anyone else within reach.  Hot pans with oil or water in them are equally dangerous in dyskinetic hands. 

The easiest solution is for her not to participate in any way in the food preparation process.  That is pretty much what has come to be.  It is much less stressful for me if she stays in her chair in the living room while I do whatever needs to be done.  That solution is the easiest one for me but not necessarily the best for her.  My need for her safety is one part of this solution, but another part is my seeking to avoid the stress of helping her do whatever part of the preparation process she can, while I am trying to get the rest of the preparation tasks done.  Our solution is easier for me but does not necessarily increase the quality of her life. 

At our last visit to the Cardiologist I asked about an increase in number and intensity of Mary Ann’s episodes of labored breathing.  One part of the answer from the Cardiologist was that her inactivity has diminished her muscle tone. 

Here is the major area of concern from my perspective.  Now that I am retired and at home with her all day long every day, I am right there, every time she stands up to go somewhere.   I ask where she is going and offer to get for her whatever it is she was going to get.   If she gets up to walk when I am not able to see her, when I do see that she is up and on the loose, I move as quickly as I can to offer her an elbow, or put my hand on the gait belt. 

One negative effect of my presence is that her freedom of movement is more limited.  Another negative effect is that she gets less exercise while I am so attentive.  Her muscle tone diminishes and the stress on her artery-blocked heart increases.  It takes less and less activity to trigger the labored breathing. 

The problem for me is that I am the one who picks her up when she falls, and I have seen again and again how close she has come to doing major damage to herself.  She has fallen and cut herself, resulting in a couple of trips to the Emergency Room to check for major damage and stop the bleeding.  I have seen her start to crumple and then lose consciousness for anywhere from a minute or so to ten minutes.  I have hurt my back trying to hold her up or get her up, putting at risk my ability to continue to care for her. 

How much help is too much help?  

Whenever we have any time pressure, or my impatience kicks in, I do little tasks that she might be able to do if she was allowed to do them at her pace rather than mine. 

When is the help actually more for the sake of the Caregiver than the one receiving the care?

Sometimes I am so available, that rather than doing a task herself, a task she could do, she lets me, asks me to do it.

When is help no longer help, but enabling behavior that slowly takes away the ability to do the task from the one for whom you are caring?

Caregivers can care too much.   We can do too much.  We can indulge our own impatience and steal abilities from the one we love. 

The challenge is to find the location of the place in between too much help and too little help.  If nothing else, asking the question, “Should I do it or let her do it,” allows the possibility of finding that place.

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.

Either there were two mice fighting on Mary Ann’s bed this afternoon as she was preparing for a nap, there were bubbles rolling down the hallway as she sat in front of the television earlier today, and there was a cat on the floor two pews ahead of us when we sat down for the Evening Service at church tonight or Mary Ann has been hallucinating today.   Lots and lots of times throughout the day from the time she got up in the morning until she went to bed tonight she has picked up non-existent threads from the floor, pulled them off her fingers and my hand once also.   

I knew today would be a day of hallucinations and confusion.  For reasons  almost never obvious to us when it happens, last night was one of the nights she was not able to get to sleep.  She was restless – up and down for water, trips to the commode, to eat a snack, to straighten her bedding, to reposition in bed, all demanding my participation.  Needless to say, I am not at my best today either. 

It pretty much never fails that when she does not sleep at night, the next day she regularly crosses the nearby threshold from lucidity to confusion and hallucinating.  The confusion is especially difficult since in her case it is not always clear if she is confused or talking about something real.  She wanted me to get a fruit jar from the basement to send to our Daughter whom she said wanted a clothes pin (or didn’t know what one looked like).  I haven’t yet emailed my daughter to see if they had a conversation the last time we saw her that might explain this . 

I am assuming that this episode last night and today is part of our recuperation process after traveling a couple of times in the last three weeks.  It seems as if she is more vulnerable to bouts of confusion, long daytime naps and hallucinations after traveling.  It is not always clear, however, what causes the adventures into the  part of her thinking and seeing that is not within the bounds of reality. 

Mary Ann’s first major bout of confusion came almost two years ago.  She began to faint often one day and struggle to be clear where she was and what we were doing.  She moved into a non-responsive mode.  She could sit in front of the television, eat food and, with the usual assistance, manage to get bathroom duties accomplished.  It seemed as if she had left the planet mentally.  She did not recognize our Daughter (very painful for her) when she came by to bring Mary Ann something.  By about the fourth day of this, I became convinced that she had crossed a threshold permanently.  Then, without any hint as to why, on that Tuesday morning she woke up completely lucid and conversant without a hint of confusion.  She was able to remember some of the time during her seeming mental departure. 

Parkinson’s Disease Dementia and Lewy Body Dementia have the somewhat unique and insidious characteristic of moving dramatically and quickly between confusion and lucidity.  Some recent threads of posts on the Caregivers of spouses with Lewy Body Dementia have been about the challenge of dealing with the hallucinations, confusion, sometimes paranoia.  PDD and LBD folks live on a margin between reality and somewhere else.  They can move from one place to the other without warning, with no obvious triggering event.  This is different from the somewhat predictable Sundown Effect that comes with Alzheimer’s Disease. 

One thing that Caregivers of Loved Ones with PDD or LBD struggle with is that those who visit or talk with their Loved One may only see and hear the lucidity.  They wonder what the Caregiver is talking about when suggesting that their Loved One has Dementia.  That problem can be especially troublesome when other family members don’t believe there is a problem, while the primary Caregiver is going crazy trying to deal with their Loved One and make difficult decisions. 

A number of those who post in the LBD Spouses group have far more bizarre expressions of delusional behavior and hallucinations.  Some have dealt with Capras delusions in which the person is convinced that their Caregiver (even if a spouse or child) has been replaced by someone who looks just like them.  They will ask to see the other you.  Some who have dealt with that delusion suggest simply telling the person you will go and get the real you, then they leave the room and return announcing that you are now the real person.   There is another delusion called Reduplicative Paramnesia in which the person thinks that the room has been replaced by a duplicate that is not the real one.  One Caregiver said she asked her Loved One if it would be okay to go ahead and stay in this new room.  Some Caregivers in the LBD group, who live in what they call Lewy Land, have to put up with spouses saying horrible things to them, lashing out at them, being accused of all sorts of infidelities because of the paranoia. 

When I read those posts I am grateful that Mary Ann is lucid most of the time, other than on days like this.  The most disturbing hallucinations have been the times she has seen a man and two children, then a man, woman and two children, finally accusing me of protecting them by lying when I explained to her (in what seemed like a lucid moment) that they were not really there. 

The general wisdom is not to argue with the person who is hallucinating since they are actually seeing what we cannot see.  My seat of the pants approach to her hallucinations is to explain that while she can actually see what she is hallucinating, it is not there outside of her mind, in a way that I can do anything about.  When she sees the mice in bed, I run my hands over the spot to verify they are not there.  I wait for her to throw away the threads or have her hand them to me to throw away.  I offer to take her to the place where she sees whatever it is to be. 

While she has told me that the problem is not that she is hallucinating but that I don’t believe her, for the most part, we have been able to work through the hallucinations and the confusion without major problems.  Judging from the experience of others, the time of major problems with hallucinations and confusion and paranoia will come.   

As with most Caregivers, we live in a fragile world traveling on a very narrow road with steep precipices on both sides.  It is not for the faint of heart! 

The problem is that most of us in the Role of Caregiver are  faint of heart.  We are at times scared and frustrated and out of control.  We take each moment as it comes, dealing well sometimes and poorly other times with what we encounter in a particular moment.  We just make do, and in doing so we survive to live to deal with whatever the next moment brings. 

It is interesting to me what impact the accumulation of surviving those moment by moment encounters has on our sense of value and purpose.  Even as our coping skills seem to diminish, a quiet strength appears.  It grows little by little as we endure.  I have more respect than words can express for those in the LBD Spouses online group who have traveled much farther down the narrow road that we have.  They are truly heroes. 

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.

Have you ever been horrified at your own pettiness?  I am!

We just returned from a trip that took us first to visit with dear friends in Grove, Oklahoma, at their home on Grand Lake.  What a beautiful spot!  Then we spent three nights and the days at Lookout Point Lakeside Inn Bed and Breakfast in Hot Springs, Arkansas.  We finished the trip at Eureka Springs, Arkansas and returned home last night, after a detour to Emporia, Kansas to have a Sundae at Braum’s.  Arkansas is overwhelmingly beautiful at this time of the year.  Dogwoods were blooming throughout the tens of thousands of acres of woods through which the roads wound.  Everywhere we looked it appeared as if there was a layer of pure white snow hanging above the floor of the forest.

As I reported in my last post, after a challenging first night at the B&B on account of some middle of the night issues with Mary Ann, and a physically draining, beautiful visually but draining day, we returned to our room.  The one handicapped parking space that allowed us to enter the B&B on the same level as our room was taken by a vehicle without a Handicapped Plate or sticker. Gratefully, there was a second space in that same area.  It was available.

We relish the handicapped parking spaces since we need room to bring the wheel chair to the passenger side of the car so that Mary Ann can easily move into it.  When she is mobile (which is most of the time) she can walk to the back of the car to get into the chair.  There was enough room to get the chair between the cars.  There was actually no real inconvenience to us.

It is true that I was concerned that the folks who had been using that lower non-handicapped spot would be annoyed that I took their spot.  It is true I was concerned that if we left in the car someone else might take that non-handicapped parking spot, leaving us the only other option of parking in an upper lot with a very steep incline to the lower door.  Upper doors led only to stairs stairs inside, not negotiable in a wheelchair.

Yes, I had reason to be annoyed.  I assumed that the person who used the spot was just another one who ignores any efforts to make life easier for those of us who have special needs.  It is always a struggle to find a way into any public place, stores, restaurants, museums, especially those in older buildings or small venues without the resources to make major modifications to their place for easy access to wheelchairs.  But we had no real problem getting to our room.  It was fine!

I couldn’t let it go.  I complained to the Innkeeper at the desk.  I saw a group meeting in the dining room and assumed someone there was the culprit.  The vehicle had indication of an organization on the door.  It seemed logical to me that the group meeitng was for folks in that organization.  I was right.

I kept checking to see if someone went out to move the vehicle.  I just couldn’t let it go!  Even though we were fine, I stewed about it.  The group met for hours.  It was not until they broke up for a late supper that I saw some of them head down the hall toward the lower parking spots.  I went out to move our van into the handicapped spot when they left.  I couldn’t keep from asking the driver if she realized she had parked in a handicapped spot.  She said yes.  She added that they (the B&B Staff) told her it was all right.  I went on to tell her about our need with the wheel chair.  I spoke with attitude, and she was not apologetic.

Caregivers sweat the small stuff.  We had not actually been inconvenienced.  The driver had been told she could park there.  The Staff person who gave permission made an error in judgment, but she did not intend to cause us a problem.  It was small stuff!  Not to me!

The more I thought about it, the more I realized just how small I had become.  We were in the midst of flowers and birds and serenity and wonderful lake views and sunsets and gourmet meals and afternoon wine and cheese and good people.  We had time to be together as we saw an impressive garden.  We got to dig through mud in search of quartz crystals.  We got to see mountains and wonderfully contrasting colors of conifers sprinkled among the freshly leaved deciduous trees.  How could something of no actual consequence grow to a size that interfered with the celebration of life we were free to enjoy in that remarkable place.

My world has gotten too small.  The realization settled in that I had allowed something to grow out of proportion to its importance.  That problem is mine.  The more I think about it, the more I suspect that those of us who are full time Caregivers are especially susceptible to sweating the small stuff.  Our world is shrinking.  Many of us are virtually house bound.  When confined to a small space, little things look bigger by comparison to the space in which we find them.  When our view of the world is filled by one central task, mostly done at our house, everything we encounter is magnified in our eyes.

It seems to me that the problem of sweating the small stuff is not confined to Caregivers.  In the past, I have noticed that older folks (whatever that means when said by a sixty-six year old) sometimes seem to be so particular.  If the restaurant doesn’t have the sweetener they use, it is to them a big deal.  Older folks seem to be grumpy about little things of no real importance.  I am horrified to discover that I have caught the virus.  I knew I was letting something grow out of proportion to its real importance.  I couldn’t stop.  Nothing I did cured that particular expression of sweating the small stuff.

That particular outbreak of the virus finally subsided.  I talked with the owner of the B&B who explained that they often did give permission for people to use that spot if is was not needed.  She apologized that the permission had been given in light of our need.  I made a point of connecting with the driver I had scolded to apologize for my tone with her.  She had just done what she had been told was all right to do.  She had a back problem that made the stairs very difficult to negotiate, so she had asked about using the spot. She felt badly that it happened.  She valued the importance of honoring that accommodation to the needs of those with physical limitations.

As with most viral infections (metaphorically speaking), there is no cure.  Our world, and, I suspect, the world of most Caregivers, is growing smaller as the Parkinson’s progresses.  To find meaning in our lives even as the space within which we live them grows smaller, we have to work at keeping things in perspective.  It helped me to think about what was happening as I let something small grow out of proportion to its actual size.  I couldn’t stop myself from letting it grow, but by thinking about it and watching it, realizing I didn’t want it to be happening, finally it settled back into its proper place.

Caregivers sweat the small stuff.  I hope that the time and effort spent processing this outbreak of pettiness will help me find the way to better perspective sooner next time a bit of small stuff starts to grow.

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The following is quoted ( some paraphrasing) from some journaling I did the other night while on vacation at a Bed and Breakfast in Arkansas. We had spent a wonderful evening with some dear friends on the trip there.  It was our first night at the B&B. (Let me apologize in advance for the graphic detail – it seemed the only way to explain the challenges of caregiving.) It is a follow-up on my last post on travel preparations:

Ask me now if I would sound so bold and courageous about traveling! It is 3:35am. Mary Ann has had a usual middle of the night need to go to the bathroom. I got her into the transfer chair by the bed and rolled her as far into the bathroom as I could and transfered her to the toilet stool. Pants needed to be changed. That task involved the use of one of those flimsy plastic bags that refuses to open or stay opened to put the completely soaked pad (generic Depends) in. While sitting on the stool, she fainted (low blood pressure due to the Parkinson’s and medication side effects). She was out for two or three minutes while I held her on the stool – no easy task since at that point she is dead weight.

She came around enough to get her to stand up. While I was getting pad and pajamas back in place, she went out again. This time it was a major challenge. As light as she is, holding her up in a standing position when she is cannot assist is beyond the strength in this little sixty-six year old body. I tried to get her twisted around and on to the transfer chair. She slipped off on to the floor. Picking her up from the hard ceramic tile floor put my back in danger of damage. There were no other options that were available. I pulled her up and managed to get her into the transfer chair. I tried very hard to use my legs rather than back, since damaging my back would sabotage our system of survival.   There was a painful twinge.

When finally she was in transfer chair she was still not fully awake. The low BP leaves her brain an without adequate blood supply, so she is often minimally responsive after a major fainting spell. Since the bed was particularly high, getting her into bed so that she did not slide back on to the floor was difficult. I finally got her on the bed, twisted her into position, adjusted her on to her side and she is now secure and sleeping.

On the positive side of the fainting spells and only partial awakening, she has no memory of the events.  Sometimes she doubts that the spells really happened, but she seems now to accept it when I tell her about one.

In the journal, I added that she had had a noisy night before this episode. She was vocalizing and active, obviously having vivid dreams. One of the characteristics of people who experience Lewy Body Dementia is that they have very vivid dreams in which there is bodily movement and vocalizing. The normal dream process includes some sort of automatic disconnect of mind and body. LBD folks seem to lack that automatic disconnect so they tend to act out and speak out what they are dreaming. I have heard lots of laughing, crying, screaming and talking over the years.

Vacationing while having responsibility for someone needing full care is exhausting and frustrating. We spent a significant portion of the evening looking for a Baskin and Robbins Ice Cream store she was convinced she had seen more than once earlier in the day. There was none.

The day after the challenging night included the usual tasks that are added due to the presence of Parkinson’s in our household. As I describe them, I am embarrassed to talk as if they are a burden to me. Many of these tasks are well-understood by anyone who has been the primary parent of one or more children. Those responsible for little ones do many of these things routinely with little or no credit for doing tasks that are terribly difficult and draining. I understand far better what Mary Ann did as a stay-at-home Mom for two children. As I whine about the impact on me of things I do for Mary Ann, she has the primary burden of the disease and the resulting dependence on me to do them. She has more reason to whine than I have.

Morning duties included giving Mary Ann a shower, washing and drying her hair.  On vacation there is no bath aid. The routines at home, provide some security and order that helps us through the days. Vacations provide new challenges. After getting the shower and hair done, comes the medication ritual. There is an Exelon patch to be removed and new one put on. The old band-aid on one skin Cancer must be removed and a new one put on – Polysporin first. Then the other skin Cancer needs to be cleaned with Peroxide. Only after those duties are complete do I start my own morning regimen.

The breakfast as always here was wonderful. We arrived, I moved Mary Ann from her transfer chair to the chair at the table and put the transfer chair aside. Pills needed to be put in a container for her to take with the meal, then the daytime pills put in the timers and the timers set and started. Meals always include getting Mary Ann’s food arranged and prepared for her to eat. The omelet needed to be cut into bite sized pieces, the same with the sausage. What parent of little children has ever gotten to eat food while still hot. It just goes with the territory. For someone debilitated with Parkinson’s Disease, eating is a difficult task. The food tends to slide off the side of the place as it is chased to the edge. The food can end up in lots of unintended places. During mealtimes, my stomach is usually in a knot as I try to determine what to do and what not to do to help, as I watch things heading for a place that will create a mess for me to clean up. Certainly Mary Ann struggles to get meals eaten. She dislikes my help, but often allows it. Meals are more uncomfortable when eaten in a public setting.

The day included a self-guided tour that took us to see beautiful gardens, but demanded pushing the wheelchair for two or three miles on paths, sometimes paved and sometimes not, sometimes ADA approved and sometimes not. The circumstances allowed few options other than effort that got my heart pounding to a degree that left me wondering if I would have to call for help to make it back to the entrance. Today Mary Ann wanted to hunt for diamonds at a diamond mine around here. It was too far, so we ended up spending close to a couple of hours looking for quartz crystals, both of us in the hot sun, me digging through the gooey clay and Mary Ann, while in her wheel-chair, examining the discoveries .

Now that we are midstream in the trip, the question remains. Is it worth it?  It is much harder to handle things away than at home.  The barriers that must be dealt with are many.  We could stay home and watch television.  It would be so much easier.  A trip like this allows us to see things we could not see and do things we couldn’t do at home.  It gets us away, with new people.  It provides exercise and stimulation (sometimes more than we would otherwise choose).

Would we still do it?  Even knowing the realities, at the moment we would still choose to go.  We won’t be home for another two days.  I’ll let you know then if that is still my answer.

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Traveling fools that we are, we are heading out again tomorrow morning.  Having just returned from Kentucky last Monday, the preparations seem to be going more smoothly than last time.

This time we are heading for the most beautiful Bed and Breakfast that could be imagined.  There are ten rooms (one especially for handicapped), all of them facing a beautiful arm of Lake Hamilton in Hot Springs, Arkansas.  Each room has its own patio or balcony.  There is a library, a reading room (both with fireplaces), a heated and cooled sun porch with games and puzzles and areas for conversation.  The decor is elegant without being pretentious.  There are many watercolors by local artists, one artist in particular.  The quality of the art is impeccable.  There is a garden that spills down the terrace toward the lake.  It is laced with paths and a stream divided by waterfalls, the water from a wonderfully gurgling fountain at the edge of the patio outside the dining room.  The garden is filled with trees and blooming shrubs and Azaleas.

The Owners and Staff are welcoming and engaging.  The breakfast is, of course, many courses, all tasty and what I would call comfortable gourmet.  I just made up that descriptor, but it is the only way of saying it that makes sense to me.  The 4:00pm wine and cheese and freshly baked cookies, sometimes fruit, is a relaxed time for conversation around the serving table or for eating on the patio listening to the fountain and the birds that visit the multiple feeders.  By the way Chocolate Wednesday is a special treat!

What I just described I am remembering from a visit last October.  That trip was a retirement gift from the Congregation that has meant so much to us in these last dozen or so years.  Since one of the owners of the Bed and Breakfast is an active Pastor, there are special rates for those of us in the business, making this trip possible for a pastor living on a pension.  This B&B is called Lookout Point – Lakeside Inn, www.lookoutpointinn.com/

I am excited about this trip.  Part of the reality of Caregiving is that anything can happen in the next few days as we make this trip.  Tomorrow something may emerge that makes it impossible to go.  We may have any number of problems as we travel.  None of that dampens my enthusiasm.  I cannot know what will happen, so I will enjoy what I can, while I can.  Mary Ann enjoyed our last visit and is motivated to make it work.

As always the preparations are many.  Choosing clothes to take along is a special challenge.  As is the case each morning, I gather as many options for clothing as I can hold and carry them to her as she sits on the edge of the bed.  Often it takes what seems to be an interminable amount of time for her to work back and forth through the clothes as the hangers dig into my fingers.  Deciding on clothes for six days of travel is an exhausting experience for the one holding the clothes.

There are pills to be prepared and put in the plastic seven day, four section each day, pill holder.  Then the bottles of pills need to be along in case anything happens to the ones in the daily container.  There are meds for the two skin cancers that have just been removed so that they can be treated properly to enhance the healing process.  One takes Polysporin and a band-aid each day, the other needs to be dabbed with Peroxide three or four times a day.  The Exelon patches need to come along. The black case with liquid band-aids to deal with the Plavix thinned blood if there is a cut comes along.  There are straws and bandages and wipes and adhesive tape, boxes and tubes and containers filled with all sorts of things that have been needed at one time or another in the past.  All are contained in that black case.

There is the booklet with all the medical information including a list of medications, insurance information, doctors names and phone numbers, her living will.  There are snacks to be gathered for the trip.  There are paper towels for the inevitable spills as we travel.  Both wheel chair and transfer chairs will come along.  We may add the bedside commode if there is room. Those who are in the stage of life that includes young children know how hard it is to gather all that is needed so that the odds of the trip going well are increased.  There are never any guarantees about how it will go, no matter how many preparations are made.

Every time we do this, the usual questions come to mind again.  Should we be traveling away from the security of home and familiar medical resources?  Is it more trouble than it is worth?  What if something happens!!

I guess we have decided that if something happens, it will happen.  We can’t control that.  We can sit at home and wait for it to happen so that if it does, we will be close to the familiar.  We are simply choosing not to sit and wait.  Our reasoning is obvious.  We have what appears to be a limited time remaining with enough mobility to even attempt traveling.  We will do it while we can and not do it when we can’t.  We think we still can, so off we 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.

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