June 26, 2009

Caregiver needs Deck Therapy

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , |
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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 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.

 

June 10, 2009

Who Makes Daily Decisions and How?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , |
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Should we go to the Neighborhood Brunch or shouldn’t we?  It took at least three days to get the decision made.  The way I finally figured out whether Mary Ann wanted to go or at least was willing to go, was by jumping up to help her when she got up from her chair and headed out to the kitchen.  She was looking for the recipe for the Blueberry French Toast that has always been a hit at the Brunch and wherever else we have taken it.  She finally signaled her wishes by her actions.  it was 5pm in the afternoon of the day before the Brunch.  We had only a few of the necessary ingredients in the house.

Getting decisions made is an unbelievably difficult challenge in our household.  We have regularly played the “What do you want to do?” game.  We almost always played that game when it was time to go out to eat. It is a miracle that we ever actually got to a restaurant and ate.  The process of deciding where to eat always went the same way unless some external circumstances led both of us to the same idea immediately.  If it was time to eat and we happened to be near Bobo’s Diner, the decision was easy – still is.  The vast majority of times it went this way, I began listing every restaurant that I could think of until I named one that brought to Mary Ann’s mind a particular menu item for which she was in the mood. Sometimes that went on so long I started heading home out of frustration.

Some things have changed as the disease process has taken its toll on Mary Ann.  The Parkinson’s has softened her voice and slowed the mental process, making it difficult to respond to questions.  The Parkinson’s Disease Dementia (a Dementia with Lewy Bodies) has stolen even more decision-making ability.  Sometimes it is almost impossible for Mary Ann to get hold of what she is thinking.

Imagine trying to play the “What do you want to do?” game when the person being asked that question has absolutely no answer, no idea how to answer.  Please understand, that does not mean there has been any change in the wanting of certain things.   It is just next to impossible for them to locate that want, name it, and get the words out of their mouth.

As with most of us who are doing full time caregiving, much of the time I can read Mary Ann like a book.  I may very well have enabled her lack of responsiveness by figuring out what she wants without her having to say anything out loud.  We have been at this relationship for well over four decades.  I can usually figure out what she wants by analyzing the circumstances at a given moment and remembering what she has wanted a thousand other times in those circumstances.

Making a decision on anything other than routine matters where circumstances can easily be read is often a protracted and painful process.  I asked about the Neighborhood Brunch occasionally for a couple of weeks.  There was no reply, nor were there any non-verbals that gave a clue as to her wishes.

I suppose the question could be asked of me, why bother to include Mary Ann in the choosing.  Why not just make the decision and go with it.  For one thing, that is not how I function. Ask those poor folks who worked with me in a Team Ministry.  Being inclusive of everyone in the process of making a decision at work often makes for a better decsion and more likelihood that all the participants will be on board when it comes time to act on the decision.  On the other side of it, I know there were times when we processed things too long and everyone wished as the Senior Pastor, I would just make the decision so that everyone could get on with doing what we were talking about.  As I often admitted, I just wanted to work it out so that I wouldn’t get the blame if the decision turned out to be flawed.

Why include Mary Ann in the decision-making?  She deserves to have something to say about her own life.  Because of the Parkinson’s and the cluster of additional health issues, she has had stolen from her any shred of control of her own life.  She has always been strong-willed, so running roughshod over her wishes would not work.  She would figure out a way to stand up for herself, even if she might take a passive-aggressive approach.

I work very hard at trying to give her the chance to decide what we will do.  I usually try to guess what she wants and then frame the question about what to do by saying “would you like to [insert what I have guessed she wants to do].”  I often have to follow it with “just say yes or no?”

As the Satuday of the Brunch got closer, I became more specific about the options.  If we went to the Brunch it would mean having the hassle of making the Blueberry French Toast, but then we would have the valuable social interaction.  I probably said it in a way that would have revealed to the attentive that I was not much interested in the task of making the BFT.  For the last two days before, I tried the “do you want to go, yes or no?” approach a number of times.  There was no response, nor where there any non-verbals I could read.

By Friday afternoon, I was specific that if we were going to go, we would need to go to the store soon.  The recipe demands that the BFT sit overnight before baking.  Still there was no response.  I don’t remember how long after that attempt at getting a response she got up with that restlessness that indicates there is something she intends to do other than the usual.  It only took me seconds to put two and two together.  She was looking for the recipe.  We were going.

I have to admit that there is a part of me that resents that she had not given any indication sooner and that her decision meant I would need to get us to the store, come home, make the Blueberry French Toast while trying to include Mary Ann in the process of making it (harder than doing it myself).  I dreaded the fact that I would need to get up at least two hours earlier than usual to get myself cleaned up, get the dish out of the fridge to stand for thirty minutes, cook it covered for thirty minutes, uncovered for another thirty minutes, make the blueberry sauce that needed to be cooked just the right length so that it could be poured over the casserole just before serving it.  During that same time Mary Ann needed to be aroused, dressed and fed so that we could make it to the Brunch on time.

When all was said and done, the Brunch went well, the Blueberry French Toast was a hit (the huge pan came home completely empty) and we enjoyed the morning.

Making decisions is terribly difficult to do, but Mary Ann deserves to be a part of them.  As frustrating as the process can be, it is important that Caregivers and Care-receivers make decisions together.

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

Added bonus:
BLUEBERRY FRENCH TOAST

12 slices white bread
2 8oz. cream cheese
l c blueberries / 12 eggs /2 c. milk
1/3 c. maple syrup

Sauce: l c. sugar l c. water
2 T cornstarch l c. blueberries
l T butter

Cut bread into l inch pieces. PLACE 1/2 in buttered 13 x 9 baking dish. Cut cream cheese into l inch cubes. Place over bread. Top with berries and rest of bread. Beat eggs. Add milk and syrup. Pour over bread mixture and chill overnight. Remove from fridge 30 minutes before baking. Cover and bake at 350 for 30 minutes.. UNCOVER and
bake for 30 minutes or until set.
SAUCE: in a saucepan combine sugar, butter, and cornstarch add water. BOIL for 3 minutes over med. heat stirring constantly. STIR IN BERRIES and reduce heat. Simmer for 8-10 minutes. Pour over French toast before serving

Mary Ann Tremain
Faith Lutheran Cookbook 6/25/02

 

June 8, 2009

Caregivers Need to Vent Frustrations.

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
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Mary Ann and I have now had our fifteen minutes of fame.  The article on our situation, with picture and all, was published  in our local paper yesterday morning.  The fame has already faded.  Oh well.  Who wants to be plagued by the paparazzi anyway. 

At various times during the day today, I stopped by the computer to read  posts on the spouses of those with Lewy Body Dementia online support group.  Since there is an expectation of confidentiality in that group, I will use no names. 

One member of the group wrote a very graphic and painful post, venting a level of frustration she feared would shock all of us.  She revealed a depth of pain that is almost beyond description.  What drove her to write was not just a passing moment of feeling sorry for herself.  It is hard to imagine anyone going through the impossible dynamics of her circumstances and surviving. 

What is more frightening is that no one was shocked at her shocking vent.  They understood.  She just put into words feelings that many in the group experience.  What is frightening about it is that it revealed just how much pain there is out there.  What is frightening about it is that those of us who are not yet experiencing the later stages of the dementia in our spouses have that level of pain to look forward to. 

One of my first thoughts was thanksgiving that Mary Ann has a comparatively mild level of dementia at this point in its progression.  We have a quality of life that would be the envy of many who are immersed in the worst of the dementia.  We can get out to eat — maybe a little messiness, but the job gets done.  Mary Ann’s memory is still better than mine.  That is pretty scary!   Since she is lighter than I am; I can still provide the physical help needed to get basic needs met.  Our communication is limited, but it still happens.  We can travel, with some difficulty, but we can do it.  Mary Ann’s needs are still within the range of our friends who volunteer to spend time with her while I do other things.  Most nights she sleeps reasonably well. 

As I have revealed in some of these posts, we have frustrating challenges that push us to the limit.  We live in a narrow margin of functionality.  We are one fall away from the end of being able to manage here at home.  Any compromise to my health could destroy our system here with one another.  None of the other options out there is acceptable to either of us.  One or the other of them might become necessary, but they are still not acceptable. 

While the difficulty of our situation does not measure up to so many others’ situations, venting frustrations is still a necessary safety valve.  Those of us to do the caregiving and those who receive it need to release some pressure once in a while to stay sane! 

I am convinced that it is healthier to name the pain we are in once in a while, to admit to ourselves and whomever we trust enough to do so, that we just can’t handle it any more.  It is far healthier to vent than it is to try somehow to sustain the illusion that we are fine when we are not always fine.  We may want everyone to think we are noble, self-giving, saints who just love caring for our Loved One every moment of every day.   The price we will pay for maintaining that fiction will at some point be a psychic meltdown — probably a physical one too. 

The challenge is to find ways to vent our frustrations without hurting ourselves or anyone else.  One of the best ways seems to me to be just what the person in our online group did when she wrote out all those thoughts that seemed to her to be so horrible.   Another way to vent effectively would be to have a trusted friend or cluster of friends who can listen to some ranting and raving without getting upset with you, or worse yet, telling you that it isn’t as bad as you think. 

Some work out their frustrations in other ways.  The occasional, “oh fiddlesticks” or “gee willikers” spoken with great gusto can release a little tension.  Just make sure that the grandchildren are not within earshot.   One of my vents of choice is to string together a long, loud and involved rational explanation as to why what just happened should not have happened.  My kids just loved those lectures.  They would often say, “Dad, can we hear that lecture again, it would be so good for us.”

I have said this in former posts.  Taking the time to process what we are going through and writing about it in this blog has provided a surprisingly powerful mechanism for working out my frustrations.  Maybe it is as simple as talking the frustrations to death.  (And  you wonder why my posts are so long.)

There is a piece of reality that frees me to take off the rose-colored glasses, look past any illusions about my goodness, or strength of character, and expose the nastiness in me, the ugly character flaws.  I understand the One who made me to love me so powerfully that my nastiness, character flaws, even my doubts and anger are not strong enough to ward it off.  I can vent to my heart’s content and remain safe and secure, able to get on with life in a meaningful way after the safety valve has released some pressure. 

For those of you who do not share my understanding of reality, the same is so.  Setting aside the pretense and the illusions and facing down the harsh realities of who and what we are, provides us with a sort of reality therapy that allows us to get through the worst times and come out able to live meaningfully in the face of terrible circumstances. 

Caregivers need to vent frustrations.  Just don’t hurt yourself or anyone else when you do the venting!

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 6, 2009

Caregivers, Why Bother to Plan Anything?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , |
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She suggested it!  “Let’s go to Braum’s for ice cream.”  Understand, the closest Braum’s is in Emporia, Kansas, an hour’s drive on the Interstate.  We usually take more scenic roads resulting in closer to an hour and a half drive time. 

Noble husband that I am, I will make the sacrifice, drive us to Braum’s, and out of the goodness of my heart join her in eating a two scoop Hot Fudge Sundae topped with salted pecans, real whipped cream and a cherry on top.  Sometimes I surprise myself with my generosity. 

Here is the rub.  When Mary Ann suggested going, it was too late in the day and storms were coming.  Thinking through that sort of information and making a decision demands using what is referred to as the Executive Function of the brain.  The mild Parkinson’ s Disease Dementia that has recently been added to the Parkinson’s Disease has dimished that particular function. 

The plan then was to go the next day.   As the next day progressed a combination of intestinal activity and fainting (Orthostatic Hypotension) flipped the nap switch in her.  I say it that way because the fainting spells sometimes drain from her the capacity to be up and about.  When the nap switch flips, it is sometimes a challenge to get her to the bed and settled there.  She may crumple to the floor wherever she is when the need for a nap hits. 

The next day included an evening activity, the Parkinson’s Support Group.  There was no moving fast enough to get the trip in before the meeting.  The day after that (yesterday) we planned to go again.  The day was completely clear other than the outing to Braum’s.  The weather was spectacular.   It didn’t happen.  It was a nap that filled the time we were going to use to make the trip.  This time it was not that the nap switch flipped, but it was the need that comes more and more often. 

Parkinson’s Disease Dementia is a Dementia with Lewy Bodies.  It patterns itself differently than Alzheimer’s Dementia.  There is a different part of the brain affected.  One of the symptoms of the progression of the disease is daytime sleeping.  Some days there have been two naps.  The usual length of a nap is two to two and a half hours.  We never know when the need will arise.

Yesterday there was no trip to Braum’s.  Today, I was determined it would happen.  I planned to add another stop along the way.  I thought phoning a friend of Mary Ann’s to come along would make the trip more enjoyable.  Jeanne and Mary Ann enjoy each other, she helps when Mary Ann needs to use a public bathroom, and since Mary Ann is barely verbal, Jeanne adds to the conversation when we travel.   She was not able to join us for the trip, but I was still determined to go. 

Again, the day was beautiful.   We ate some lunch at home.  I made some surprisingly tasty chicken salad.  Those who have read many of the posts on this blog appreciate what a remarkable accomplishment it is when I make a meal, especially one that is fit for human consumption. 

Almost immediately following lunch, the nap need arose.  By the time Mary Ann awoke, the trip to Braum’s was again out of the question.

Why bother to plan anything?

I am a planner.  I get in my mind how the day will go, what needs to be done, and varying from that plan upsets my equilibrium.  The role of full time Caregiver has resulted in the dismantling  of my daily structure. 

Caregivers respond, they do not work a predetermined plan.  Mary Ann’s needs come when they come.  She cannot fill them herself.  That is my job.   The challenge is trying to figure out how to keep from going crazy since as a Caregiver, I have very little to say about what I will be doing and when I will be doing it. 

For eighteen years of my almost forty years in ministry before I retired, I worked with Youth.  The first three years in the ministry I taught religion classes and served as a Pastoral Counselor at a large parochial high school of some 900 students.  For the next fifteen years, working with Youth in a congregation was a major part of my portfolio.  When leading Youth activities and classes and retreats, I learned quickly that there needed to be a detailed plan in place but along with that plan a willingness to throw the plan out completely if circumstances demanded it.   

That is exactly the sort of planning needed to be the primary Caregiver for someone who needs help with most everything they do — without the Caregiver going crazy.  My goal from the day I retired has been to have options immediately available so that if Mary Ann’s needs eliminated whatever we had planned, something else could be substituted. 

What that means most of the time is that I need lots of small tasks that can be done here at the house while Mary Ann is napping, or interested in a televsion program.  The hardest part of adapting to this new pattern has been gaining the ability to let go of plans I have in my mind without becoming resentful and grumpy.  In that regard, I am still a work in progress. 

Today, when Mary Ann woke up, instead of heading for Braum’s an hour away, we went to the Baskin and Robbins on the other side of town, drove by the beautiful Ensley Gardens and came home.  A Hot Fudge Sundae made with Nutty Coconut ice cream with chopped nuts, whipped cream and a cherry on top goes a long way in calming the ruffled feathers of a planner whose plans have just been frustrated. 

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 4, 2009

Deep Brain Stimulation Surgery for Parkinson’s

Posted by PeterT under Information on Parkinson's | Tags: , , , , , , , , , , , |
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How would you like to have a nickel-sized hole drilled in your skull and a wire threaded through your brain from the top of your head to the bottom of your brain, right at the brain stem?  That is where your brain meets your spinal cord.  How would you like to have that procedure done while you are awake?  And then how about having a second surgery just like it five weeks later?

Tonight at our Parkinson’s Disease Support Group meeting, there were a number of people present who have done just that.  They have had the Deep Brain Stimulation Surgery to help control the symptoms of their Parkinson’s Disease.  Their willingness to seek out such a surgery should give us a clue as to just how hard it is to live with Parkinson’s Disease.  The surgery does not cure the disease, it just sets the clock back a while so that the person living with Parkinson’s returns to a quality of life they had before the medications side effects began to outweigh its benefits.  Ideally they gain four to six hours of fairly normal mobility.

A technical description of the surgery can be found on the Kansas University Medical Center’s web site:  “To treat Parkinson’s disease, DBS [Deep Brain Stimulation] delivers controlled electrical stimulation, most commonly through bilaterally implanted electrodes, to targeted cells in the subthalamic nucleus (STN) or internal globus pallidus.”

Tonight Dr. Jules Nazzaro, the Neurosurgeon who does the surgeries talked with the group in detail about how he does the surgery.  He then spent a great deal of time answering questions.  There were some in the group who were considering the surgery, one very anxious to have it done as soon as possible.  One of those present who had the surgery a year ago, when asked how it went, got up and walked around the room.  There was no obvious evidence that he had Parkinson’s.  Before the surgery he fell about a dozen times a day, had a hand tremor, was taking well over twenty pills a day to help give him some mobility.  He is now taking only four pills a day and will soon reduce that to two.  After a time those pills create at least as many symptoms as they control.  Reducing medication is one of the most thrilling of the results of DBS.

There is a rigorous evaluation about three days in length to determine if a patient with Parkinson’s is likely to benefit from the surgery.  First of all, the person needs to have what is called idiopathic Parkinson’s rather than some form of Parkinsonism.  Parkinsonism is some other pathology that produces Parkison’s-like symptoms.  Because of the time spent working in the brain itself, those for whom the disease has progressed to the point that there are memory problems are vulnerable to those problems worsening. There are a variety of criteria for qualifying for the surgery.

Dr. Nazzaro is part of a team including Neurologist, Rajesh Pahwa, who happens to be Mary Ann’s Neurologist.  Dr. Pahwa is the one who determines whether or not a person is a good candidate for the surgery.  He prescribes and manages the complex regimen of medications that control Parkinson’s.  Dr. Pahwa is a master at finding just the right formula of pills to match each Parkinson’s paticnt’s unique needs.  When the medication options have finally been exhausted, but the patient is still healthy enough to go through it, Dr. Pahwa finally recommends considering the surgery.

It was a number of years ago that he suggested the surgery for Mary Ann.  She was just not interested.  At that time, I had mixed feelings about it.  I wanted her to have it, but I was not willing to try to influence her decision.  For one thing, selfishly, I didn’t want to have any responsibility for the decision if something went wrong.  As is obvious, there are risks to the surgery.  A second consideration is the importance of the attitude of the patient undergoing the surgery.  The patient her/himself has to make the decision and be committed to the recovery.

Actually, the two surgeries putting the lead deep into the brain are two of four surgeries.  There are two additional outpatient surgeries to thread a wire from each of the two leads under the skin into the chest area and insert the two generators.  The generators are turned on and off by a magnet.  The generators stimulate  specific areas of cells, actually to reduce their activity.  The missing dopamine that causes the Parkinson’s is what usually controls those areas.  One of those areas produces tremors if not properly controlled and the other produces immobility if not properly controlled. At least that is my understanding after attending so many Parkinson’s Symposia.

As an aside, Michael J. Fox has had what is called a Pallidotomy.  In that surgery a permanent lesion is made on the Globus Pallidus to reduce its activity and help control the movement difficulties that come with Parkinson’s.  One advantage of the DBS surgery is that it can be reversed.  There is no permanent damage to the brain should some more effective treatment come along (or a cure!).  If I understand correctly, controlling the two areas has a better track record for reducing symptoms and the need for medication.

At this point in the progression of the disease, along with the other major health problems that have joined the assault on Mary Ann’s body, she is no longer a good candidate for the DBS.

The surgery is recommended now earlier rather than later in the disease process.  It is a quality of life issue.  I have often heard people say that they finally had their back surgery or knee or hip replacement surgery when the pain was worse than their apprehensions about the surgery. The same is so for DBS surgery.  When finally the symptoms of the Parkinson’s itself and the side effects of the medication are  frustrating enough, the DBS surgery offers hope for a better quality of life.  There are not guarantees that come with the surgery, but the track record is very good.

University of Kansas Medical Center did the first DBS surgery, and Drs. Pahwa and Nazzaro are among the very best in the nation.  For those who are suffering the effects of Parkinson’s Disease, if the time is right, DBS surgery offers hope.

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 2, 2009

Caregiver’s Soul is Fed

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , |
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While the owners would not appreciate it, I hope no one purchases a lot and builds a home in the River Hill subdivision.  That undeveloped subdivision provided the setting for a wonderful meal of soul food tonight.

All of us need nourishment for the deepest part of ourselves, the place from which we draw strength for traveling through days that are sometimes filled with too much to do.  Often much of what fills our days does not nourish our souls but instead drains the life and strength and stamina from us.

While my days are not so full as they have been in the past, and Mary Ann’s and my time together is going pretty well, the need for feeding my soul remains.  Tonight it was fed.

Twila came to stay with Mary Ann.  They seemed to enjoy their time together.  There was progress made on a novel — a different one from Elaine’s Sunday morning book.  I headed out to that spot high on a hill, above and behind a new shopping area.  There is a new street that has been constructed, and I am sure the area has been platted with very expensive lots.  No one has bought a lot and built yet.

The spot has trees on both sides bordering the field of varied and colorful weeds that will probably one day be lawns and houses.  The view to the west is beyond description.  There are trees and fields and low rolling hills that extend all the way to the horizon many miles away.  A little area of the Kansas River is visible.  The railroad tracks run along side the tracks. Trains can often be seen and whistles heard as they move along those tracks.

Today, while Mary Ann was looking for a couple of books at the library, I noticed the shelves containing the Classical Music CD’s.  I picked a couple almost at random.  One is called “The Prayer Cycle” by Jonathan Elias.  Actually it both confused and intrigued me when I looked at it more carefully.  It is listed as a choral symphony in nine movements.  The confusing part was that those listed as performers included Alanis Morissette, James Taylor, the American Boychoir, John Williams, Linda Ronstadt, The English Chamber Orchestra and Chorus, and a number of people with names suggesting a variety of nationalities.

To describe the experience I need to borrow a Greek word.  Maybe having to take seven years of Greek is paying off.  The word I am borrowing is the word for compassion. The Greek word for compassion transliterated into English is splangknidzomai.  The first part of the word, splangkna, means viscera, innards, guts.  That is where the Ancient Greeks understood deep feelings to reside. Given the size of the antacid business, I suspect the Ancient Greeks were right. Tonight, the music on that CD combined with the sounds and sights of that remarkable setting to reach into the depths of my splangkna to stir and lift my spirit.

The sun was still a couple of hours from setting when I looked at it hanging in the west.  There were some thin and hazy clouds muting its brightness.  As it moved lower in the sky, it became less and less visible.  The cloudiness had no clear boundary, except that it sort of melted into a mist in the trees on the horizon.  There was just a powerful calming in the view from that hill.

The trees on one side in particular were quaking in the wind providing more power to the calming effect.  They were not the Quaking Aspen of Colorado, but another member of the family.  There were, of course, birds to be seen and heard.  One tiny bird sang a wonderfully complex melody so loudly that I could hear it over the music on the CD.

There was a hawk sailing around for a bit.  I am convinced that the hawk was as exhilarated by the currents under his wings lifting him as I was by the sights and sounds on that hill lifting my spirit.  There were some swallows that appeared to be dancing with one another in midair.  I realized that the dance was their way of catching food.  Without the dance, they would die.  I felt as if I was being surrounded by metaphors one after another filled with clues for living meaningfully.

One part of the scene was the intrusion of the relentless sound of tires on the pavement of a nearby Interstate.  That sound actually seemed to help balance the exhiliration of my lifted spirit with the practical realities of my daily experiences.

Then there was the music.  The music blended choral, instrumental and chant together in the same pieces.  The chant was odd.  It was certainly not Gregorian Chant.  One semester in the Seminary, I had a class in the Solemnes style of Gregorian Chant.  For three years I sang in a small chant ensemble that sang at weekly chapel services.  While this was not Gregorian, it was chant.  The chant and choral music was sung in a variety of languages, Hungarian, Mali, Swahili, Dwala, Tibetan, German, French, Urdu, Latin, English, Italian, Hebrew, and Spanish.  For some reason I had the odd feeling that this chant was a reverent, multilingual, classical style of Rap.

I was struck by the way rich chords and complex dissonances contrasted one another, each more beautiful because it was next to the other.  In the moments of silence between phrases in the music, the birds and the wind in the trees and the sounds of traffic folded more prominently into the experience.

With this feeble attempt at translating the sights and sounds of a moving, spirit lifting experience into words, I intend to say that a couple of hours well spent can feed the soul of a Caregiver whose days may be filled with activities that do not necessarily lift the spirit.  For me, it is the soul feeding experiences that help bring meaning to the daily tasks.  With a well-fed soul, the Caregiving itself can become soul food.

Eat heartily!

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 1, 2009

Good Ideas for a Caregiver and Receiver’s Day

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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Volunteer Elaine has one rule for us: “Don’t read the book between my visits!”  She doesn’t want to miss any part of the story.  Elaine comes on a Sunday morning once a month for about three hours.  She reads from a novel she and Mary Ann have chosen.  This morning, she took Mary Ann in the wheelchair to the neighborhood vest pocket park a little over a block away.  The two of them enjoyed the flowers folks had planted in the back yards that border the park.  There were a couple of pairs of Bluebirds that entertained them.  When they returned, Elaine started reading.  The next Sunday morning that she comes, she will go on with the next chapter or two in the story.

Each of the Volunteers brings something different to the visit.  Sometimes just watching television with Mary Ann is what is needed.  Other times Volunteers will keep Mary Ann abreast of their own lives and families.  Some do a little ironing (or a lot).  Some will bring food and maybe make the meal while they are here.  All of them expand Mary Ann’s world.

There are times a Volunteer will come while I remain at the house, doing a variety of tasks, sometimes outside, more often in the office at the computer.  That option is especially helpful for Volunteers who might be new to the role, needing to get accustomed to helping Mary Ann, or uncomfortable with or physically unable to do some of the caregiving duties.

Of course there is a benefit for the Caregiver when there is a Volunteer.  As a retired pastor still worshiping at the church from which I retired, I have chosen to keep a low profile.  The church has an Evening Service, one that I started about a decade ago.  It has a comparatively small attendance, and the service is a little quieter and more contemplative than the morning services at which there are lots of folks of all ages coming and going.  The Evening Service is a friendlier setting for those with handicaps since there are fewer people to move through, fewer energetic little ones zipping here and there.

The Evening Service is the one that we have chosen to attend.  When there is a Volunteer available I use the Sunday morning time for solitude.  I usually drive to a lake about twenty minutes from here.  The lake is large and beautiful.  I usually find a spot there to do some devotional reading and just look around at the sights.  Today, after the time at the lake, I drove beneath the dam to a marsh that has been preserved for wildlife.  As I walked along a path beside the marsh, looking at and listening to the birds, as I listened to the occasional frog, watched the dragon flies, listened to the wind blowing through the tall grass, it dawned on me why their was such a calm and comfortable sensation washing over me.

When I was growing up, we lived two blocks from a swamp.  That swamp was my retreat.  I spent hours there, at least until my Mother figured out that I was at the swamp again.  I always went back, no matter how often I got scolded.  I still remember the willow switch stinging the back of my bare legs (unfortunately I was wearing shorts) with each step as we walked back from the swamp after Mom came down to get me.

The sound of Red-winged Blackbirds singing always takes me back to those idyllic days.  I am there again with frogs and cattails and tadpoles and water bugs, with the wind blowing through the weeds.

A few hours away is an essential element in healthy caregiving.  I need those times of solitude, times during which I have no responsibilities.  I stay as long as I choose in one spot and when I feel like doing so, move to another.  This morning I walked very slowly and soaked in every dimension of the experience.  The Great Blue Herons, Meadowlarks, Tree Swallows, Barn Swallows, Orioles, the sounds of the occasional frog, the wind in the nearby Poplar Trees (the greatest for making wonderful sounds when the wind is blowing), all got the time and attention they were due.  Each time I would stop for a while, more variety of sights and sounds would enter my awareness.  They were there before, but until I quieted myself and relaxed, I wasn’t aware of them.  Civilization made itself known through the sound of four-wheelers in an area made for them not far from the marsh.

Mary Ann and I each got a time this morning that was refreshing and renewing and entertaining.  After I came home there were some problems to deal with due to the fainting issue making its presence known.  After we got through that, I made lunch. Yes, I actually cooked!  It is another of those recipes so simple a caveman could do it (sorry Geico guys).

The recipe:  I opened a package of pre-cooked bratwurst sausages and browned them in some oil in a large pan.  After setting them aside I put a large quantity of onions (cut into fairly large pieces) and browned them in the pan with the drippings from the brats.  Then came a couple of spoonfuls of garlic pieces from a jar.  After that I added lots of slices of apples.  After cooking all that for a while with the lid on so that the apples cooked through and softened, I put the brats back in, opened a can of Bavarian style sauerkraut over the top and let the flavors mix and the liquid from the apples and kraut cook down a bit. On occasion I have added a little left over white wine into the pan to deglaze it.  I do that just because it sounds cool.  I guess it also adds a little sweetness. By the way, there is no need to add any seasonings to this dish.  The apples and onions and Bavarian style sauerkraut add plenty of sweetness, and the brats and sauerkraut add the saltiness and lots of flavor.

What made me proud today was that Mary Ann actually ate it and seemed to enjoy it!

After Mary Ann napped, we headed off to the Evening Service.  That was a corporate worship experience for us, and a chance for Mary Ann to get out into a setting that allowed some social interaction.  She did struggle a bit during the service.  There was one fainting spell, but it passed quickly.  We just did a little more sitting than usual during the service.

Getting out with people is another important need both for the Caregiver and Receiver.  It is tempting to stay isolated at home.  While that may be easier, in the long run it will take a heavy toll on both.

We picked up a strawberry shake from Sonic for Mary Ann on the way home.  I made myself a tasty peanut butter and jelly (Blackberry Jam) toast, we watched a little television, I watered the flowers and now I am writing this while Mary Ann is secure in bed — I can see her on the little seven inch baby monitor screen.

This is hardly exciting reading, but it is an account of some of the practical tools  that allow us to travel this journey with Parkinson’s in a way that doesn’t steal from us the quality of our lives together.

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

 

May 31, 2009

Caregivers: Legal Issues

Posted by PeterT under Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , |
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A few days ago there was a thread of discussion on an online group I am in for Caregivers of spouses with Lewy Body Dementia.   There were all sorts of issues that surfaced as people talked about stepchildren who seemed unwilling to show real concern for their parent who has dementia and his/her caregiving spouse.   In some of the cases there was very active interest by those same stepchildren in the disposition of the estate when that time would come. 

That conversation brought up lots of legal issues that need to be dealt with whether or not there are any problems in the family.  This is one of the times I am especially grateful that we have a healthy family with a deep and genuine love combined with intellegence and common sense.  It is hard to hear about some of the ugliness that can emerge when money issues trigger a mindless greed in people. 

One of the dynamics of dealing with dementia is that, since the executive function of the brain ceases to work properly, the ability to make well thought out decisions ceases.  Gathering and processing information as is necessary for making good health decisions or financial decisions, is no longer possible, at least consistently. 

With dementia of any sort, the progression of the disease makes it important to act sooner rather than later in planning for future contingencies.  With the Lewy Body dementias, the roller coaster pattern of times of great lucidity mixed with times of the inability to track thoughts, makes it especially important to make long term decisions and set in motion processes that will insure that legal matters will be in order no matter what comes.  The goal is first of all to keep all the family resources available for whatever care is needed for the one who cannot care for him/herself.  Secondly, it is to provide the usual care in estate planning so that the wishes the deceased are reflected in the disposition of their possessions.

While many of the legal issues are related to the time of death, some are matters of concern for the living.  All of us, no matter our age, need a Living Will.  We need people designated to make decisions when we are not able to do so for whatever reasons.  For a Caregiver spouse, the question is, who shall that be.  If legal documents designate a spouse who has dementia as the one who has Durable Power of Attorney for Health Care Decisions, that spouse will be put in the position of carrying a decision-making weight beyond their ability.   If that spouse is appointed attorney-in-fact for all the rest of the decisions that need to be made through a Durable Power of Attorney, the same will be so.  There will be a vulnerability to manipulation by others who may not be a trusted part of the immediate family when major decisions need to be made.  All someone would need to do is obtain a signature in front of witnesses, and the wishes of the Caregiver and spouse could be frustrated.

The way to proceed in the area of all these legal matters is to locate a reputable Attorney who specializes in Elder Law, preferably a member of the National Academy of Elder Law Attorney’s, Inc.  (NAELA).  Powers of Attorney should name someone completely trustworthy who is committed to the wishes and the well-being of the Caregiver.  The transition from spouse to Son or Daughter or other trusted family member can be difficult for the one suffering from dementia.  It is essential to make any needed changes with the full knowledge and participation of all those impacted by those changes.  If no one in the family can be found to serve as the agent for the Powers of Attorney, a Guardian may be chosen.  Often the court has a list of people who can serve in that role. 

Then there is the issue of how a Will should be structured when there is a spouse with a form of dementia.  The challenge comes if the Caregiver dies before the spouse with dementia.  If the all the assets transfer to the spouse with dementia, as was so with the Powers of Attorney, that spouse will have decisions to make that he/she is no longer able to make, and he/she will have a vulnerability to manipulation.  If all the assets are in the name of the spouse with dementia, they are all subject to being drawn down if nursing home care is needed. 

There are a number of options that the Elder Law Attorney can lay out for the Caregiver and Spouse.  If there are trusted children, it is a fairly simple matter to assure that all the resources will be used for the spouse with dementia should the Caregiving spouse die first.  All the assets are put in the name of the Caregiver with the children as beneficiaries of the estate.  Again, an Elder Law Attorney needs to be consulted rather than taking advice written in a blog. 

Since beneficiary designations on insurance policies, IRA’s, pension plans (and any other instrument with a beneficiary designation) go directly to the beneficiaries listed and take precedence over anything written into a will, all beneficiary designations need to reflect the current wishes of the Caregiver and spouse. 

When there is a spouse with dementia the legal issues  are complex, but ignoring them could result in some very unpleasant consequences, especially if the Caregiving spouse predeceases the spouse with dementia.  The sooner decisions are made, the better.  

Again, the key to making good decisions and formulating plans that are legal, clear, and reflect the wishes of the Caregiver and spouse, is to find a reputable Attorney versed in Elder Law in your state. 

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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