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November 8, 2009

Fourth Day Home From The Hospital

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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It is about 11:30am and Mary Ann is still sleeping.  She got up last evening long enough to eat some ice cream and apple crisp.  Then she took her pills, went back to bed and slept the entire night.  This morning, there was a commode trip at about 7am, then at about 8:30am she got up long enough to have juice (with Miralax) and yogurt.  Then she decided she wanted to go back to bed.

The good news about this is that when she has been up, she has been able to interact verbally and has not been picking up threads that are not there, nor has she acted as if she was hallucinating.  Her head is no longer hanging down on her chest.  Needless to say, those are encouraging signs. She is still unable able to eat without assistance.  I fed her last night and this morning, even putting her pills in her mouth.  She did manage to lift the cup and drink most of the juice by herself.

Yesterday, I chose not to awaken her for medications.  Most of her meds are intended to help her when she is up and about.  Most of them have a short half life.  They help when they are in her system, but are not necessarily maintaining a constant level of medicine 24/7.  Missing one dose of the meds seemed to me to be acceptable. I concluded that the rest was more important.  She did take her night time meds, so there has been no interruption in them.  She took the morning pills today, and while she was lying in bed, I changed the Exelon patch she had worn for two days.  That is a med that needs not to be stopped for long.  It is pretty powerful and when initiating the patch, it takes a month on a lower dose to keep from creating the unpleasant side effect of pretty bad nausea — been there, done that.  I am also going to wake her up for the meds that come every two hours during the day.  My goal is to return to and maintain a normal schedule in hopes that will help us return to the pre-hospital norm.

The other parallel recuperation activity needed includes intestinal activity.  There has been some activity, this morning during the 7am trip to the commode.  Then before going to back to bed after breakfast (the yogurt, juice and pills) there was a little more substantial activity.  At the risk of being indelicate (there is nothing delicate about being a Caregiver), it is still at the stage where manual help is needed.  With that lovely image in mind, you can appreciate my excitement when things come out on their own and Dr. Oz’s S appears.  We are not yet back to that wonderful normal.  At this point I am hopeful that in a couple of days we will be there.

Of course I cannot know where this will go, but my intention is to methodically do all the things we have normally done in the past as they are possible.  My hope is that by Tuesday, a week from leaving the hospital, normal will have returned.  Whatever is so by then will probably need to be established as our new norm.

My need to establish a norm of some sort, any sort, comes from the way I am wired.  When I get a set of expectations in mind, it is tough for me to incorporate changes very quickly.  Since retirement, the rewiring is in progress.  By removing almost all commitments, there is space and time to adapt to whatever changes come without the added stress of failing to meet those commitments.  When we went to the hospital, there were a few appointments (dentist, doctor, among them) to be changed, but nothing for which I had to find substitutes or burden others to do for me.

Even though things can change dramatically at any moment (as in Saturday’s entrance into the hospital), the norm is where my pivot foot rests when I turn to meet the unplanned, unexpected.  Unlike Michael Jordan in his best days, I cannot hang in the air for very long without a place to stand.

In a moment of devotional time last evening, I read this prayer.  I receive a weekly email from the National Catholic Reporter web site with a devotion by Fr. Ed Hayes.  (Yes, they allow Lutheran Pastors on their site.)  I have appreciated his writings for decades, and I had the privilege of doing a marriage ceremony with him many years ago.

I need prayers for flexibility!

A Psalm of Flexibility

By Ed Hays
Created Nov 06, 2009

O spirit of God’s eternal springtime heart,
grant me the virtue of elasticity.

Make my heart as boundless as my Beloved’s heart,
which at this moment is creating
new galaxies and infant suns.

Make me pliable and playful with your Spirit
as you teach me the alchemist’s recipe
of how to keep my heart’s skin
like baby’s skin, ever-expansive,
able to hold the wildest of wines.

Stir my mind well with your sacred spoon
to awaken the fermentation of ideas
stilled by the ten thousand little compromises
required of me by the stiffness
of the old leathered skins of society and religion.

Gift me with elastic frontiers of heart and mind,
so I can see before my eyes,
both in the heavens and on earth,
how old and ever-new are those partners
passionately dancing together
in the perpetual birthing of your universe.

From Prayers for a Planetary Pilgrim by Ed Hays

The Spiritual support I receive through Ed’s writings, through the Taize Music from their site, from Weavings, a spirituality journal, through Scripture, corporate worship and the Spiritual Formation Group that meets at our house weekly, helps provide the source strength that has allowed survival so far.

There are many wonderful folks who give personal support to our household.  Yesterday afternoon, John called and asked to come over for a time to talk.  John has been a support for very many years.  Mary, our friend who schedules Volunteers, had let him know that things were getting a little hard to handle at our house.  Yesterday, Edie, the leader of our Spiritual Formation group emailed about the possibility of bringing dinner over.  Don and Edie came over and we feasted on lasagna, salad, gourmet bread, some Shiraz red wine, topped off with apple crisp and vanilla ice cream.  Mary Ann slept through supper, but ate a big bowl of apple crisp and ice cream later in the evening.

It is now about 1:30pm and Mary Ann is still sleeping soundly.  She has had two rounds of the meds that come at two hour intervals during the day.  To administer the meds, I put my hand under the pillow, lift her head, put them in her mouth, hold a straw to her mouth and she drinks until the pill(s) are down.  Often, when I give her the pill(s), she gets up from napping.  The last few days when I let her head back down, she just goes back to sleep.  It has not been unusual in the past for her to continue to sleep, just not so many times in a row.

She finally got up and dressed around 2:30pm.  She ate a little more, then provided some unaided intestinal activity worthy celebration.  She went back to bed at about 5pm.  It is 9:30pm now.  She is still sleeping.  We will see how the night goes.

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

 

November 6, 2009

Third Day Home from Hospital

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , |
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“Are you going to pack up so that we can go?”  She thought we were still in the hospital.  After all the naps yesterday, the first part of the night was pretty tough.  She was up every few minutes sitting up, messing with the sheet.  She said she was making the bed.  It must have happened a dozen times with only minutes between each one.

When she thought she was in the hospital, I pointed to her quilt hanging behind the bed as I did once before.  This time she just said, “She keeps insisting,” which I understood to mean her “other self.”  She has not used that language before, but that sort of delusion is among the problems I hear about in the online Lewy Body Dementia Spouse Caregiver group.  That may not be what she meant, but it certainly sounded that way.

She settled down by about 1:00am.  Gratefully, she stayed asleep other than for a couple of trips to the bathroom for a number of hours.  This morning before 5am, she got up in need of something to eat.  I got her up and to the table for some juice and crackers.

Again this morning, she could not manage to negotiate eating the cracker without my feeding it to her.  She couldn’t manage the juice by herself either. She couldn’t seem to locate her mouth with the straw.  That has happened on occasion in the last weeks, even before the hospital stay.

Gratefully, after having the juice and crackers, she went back to bed and to sleep, and has been sleeping ever since– it is about 9:45am now.  She is moving around quite a bit in bed, but that sort of movement has been so from some years before the Parkinson’s was first diagnosed (22 years ago).  Vivid dreams with physical movements associated is one of the signs of future problems with this sort of dementia.  Of course, it is not a direct correlation, lest those of you who experience that think you are doomed to dementia.  It is somewhat predictive, but lots of other things come into play for problems with dementia to arise later in life — both genetic and environmental.  At least that is my understanding from what I have heard and read.  I am not an expert!!  Please don’t attach that burden to any observations I make.

I just glanced at the monitor again to see how Mary Ann is doing.  I did that automatic check that is natural to those of us who are Caregivers.  She was fairly still.  I waited and watched to see her body movement to verify that she is breathing.  Her current circumstances do not seem precipitous, so there is no special need to check.  It is just a normal response to her general condition.

Parenthetically, I didn’t trip the live trap soon enough this morning.  There is now another squirrel with a frightening tale to tell.

She has been sleeping now for many hours.  It is almost noon.   I am wondering who she will be when she awakens — the confused Mary Ann, or the one who is still mostly functional.  I am going to let her sleep as long as she can in hopes that she will “sleep it off” and return to the  version of normal we had before the hospital stay.

It is almost 4:30pm.  Mary Ann stirred for the first time today at about 4pm.  She got up to go to the bathroom.  We changed the disposable underwear, and I thought she would then get dressed.  Instead, she wanted to put her pajama bottoms back on and go back to bed.  That is where she is now. 

Once before she slept for almost two days after having had multiple sleepless nights which had resulted in much increased hallucinating.  She was significantly improved after that two day sleep.  I am, of course, hoping, planning, expecting that to be the case this time.  I am not so foolish as to count on it as a certainty.  She may be anywhere from completely lucid to virtually unable to function. 

As always, we will deal with what comes when it comes.  While I have in my heart of hearts ruled out residential care, this experience is causing me to reconsider at least thinking about the possibility.  I am still not actually considering it, but I am allowing a mental review of my position on the matter.   At the moment, all the options I am actually considering involve remaining here at home, adding whatever help or equipment is needed.

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.

 

November 5, 2009

Second Day After Hospital

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Uncategorized | Tags: , , , , , , , , , , , , , , |
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There is smoke coming out of the china cabinet!  You had better wash that bedspread, there is dirt all over it.   Is that cat real?  The cat question was a bit encouraging since she did not simply assume that it was real.

She accepted my offer to feed her when she just couldn’t seem to negotiate her bowl of “Little Bites” shredded wheat.  She had managed most of the yogurt on her own.  She again had trouble getting the straw to work as I tried to get her to finish the Miralax in water.  That is one of the most important items in her medication regimen.  At first she wanted to drink without the straw, but there was no way to get her head erect enough for the water to make it in her mouth.  In the hospital, when she was most disconnected at night, she couldn’t manage to suck on the straw, but blew through it instead.

There have been some moments of lucid interactions.  As she was lying down for a nap (about an hour after getting up), she mentioned lisiening to the “radio” meaning the book on CD that we were listening to on the trip.

By the way, she did sleep better after the applesauce last night.  It is a good thing.  I was running out of patience with the constant needs every few minutes.  There were more times up throughout the night, but there was enough time between them to get some sleep. She did get up pretty early this morning.

I am starting this post early in the day in hopes that I can get to bed earlier tonight.  Of course, my hope is that Mary Ann will be able to get to sleep at a reasonable hour and stay asleep other than a few trips to the commode during the night tonight.

It is now mid-afternoon.  It continues to be a very difficult day.  After her nap, during which I wrote the paragraphs above, we attempted lunch.  There was a piece of Glory Days’ Pizza left from yesterday.  That is her favorite.  I cut it up for her, and she managed a few bites of it with her fork.  Normally, she has no trouble eating small pieces of pizza with a fork.  Finally, I needed to help her. As she had yesterday, she tried to take a drink of Pepsi and set the cup down on top of the pizza on her plate, seemingly unaware that she was doing so.

She ate a few bites of her favorite green Jello, Cool Whip and cottage cheese salad that Mary brought yesterday.  After a two or three spoonfuls she was done.  I offered her a chocolate chip cookie.  She could not negotiate holding it and getting it to her mouth.  I helped her eat half the cookie.

We drove over to Doug and Marikay’s so that I could get a much needed haircut.  She sat with her head down during that time.  When we drove back by the coffee shop, I offered to use a buy one get one free Dairy Queen Blizzard coupon.  She just couldn’t answer intelligibly.  I concluded that she did not want any.  She would not have been able to handle eating it at the DQ, but we could have brought them home.

Moments ago, she wanted to go to the bedroom for some reason of which I was not aware.  When we got there, she wanted to get dressed for bed and was irritated that I didn’t realize what she thought was obvious.  I explained that it was only 3:30pm, and she recognized that it would be too soon to go to bed.

She is now listening to the book on CD that we started on our trip to Hot Springs.  What a dramatically different place we are now, less than a week from the time we were enjoying there.  I just asked if she had any pain or anything was hurting.  She said clearly that she was not hurting in any way.  Her head remains hanging, but she seems to be awake.  I don’t know if she is able to follow the book, but at least at the moment she is remaining in the chair.

I continue to hope that at some point she will snap out of it.  Right now, we would not be able to manage going out to eat in a restuarant, one of our main treats.  This is a whole new place in this trek, a place we would rather not be.

So far this is a pretty distressing day.  She is lying down again.  It is about 4:45pm.  I asked her earlier if it would be okay for us to go to the Parkinson’s Support Group tonight.  She connected with the question and said it would be.  Then a while later she fell while I was on two phone calls, one a survey from our Financial folks on the land line and another on the cell phone from our Son who is on vacation with his family in Colorado.  They had just seen an American Bald Eagle as they were driving along.  She decided she did not want to go to the Support Group meeting.  She said she needed to lie down.  There had apparently been lots of drainage from her mouth the last time she was napping.  I hadn’t noticed just how much it was earlier.  I changed the bed and have her bedding and pillow in the washing machine at the moment.

I am writing lots today, I suppose on account of the need just to talk about what it going on.  This is a new level of need.  At moments like this there is a sense of isolation that comes, recognizing that even with all the support we have from so many wonderful people, ultimately we are on our own as we deal with this.  No one can do it for us.  Others have lives full of needs that they must deal with.

I am, of course, confident of the Lord’s Presence.  Even the Lord experienced a sense of isolation.  It is helpful to recognize that kinship.

On a lighter note, I forgot to spring the live trap this morning after there was no raccoon to be found in it.  A squirrel managed to trip it while foraging for seed that had fallen into the trap.  Is he going to have a story to tell!  He moved like lightning when I opened the door to the trap.

There may be more to tell as the evening wears on, but I will post this now and write more later or tomorrow.

Addendum: Mary Ann got up from her third nap today just long enough to change into her pajamas.  The sheets needed to be changed again on account of the drainage from her mouth.  The washer and dryer are getting a workout.  Logic says that tonight will be a restless night since there were three naps today.  I guess my hope is that she is sleeping off the confusion and will soon return to normal. 

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.

 

November 2, 2009

To the Hospital We Go!

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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This is one of our most dreaded experiences.  Mary Ann felt some chest discomfort after a long nap Saturday afternoon   We had returned home from Eureka Springs Friday late in the day.  We were in the car when she mentioned the discomfort.  I gave her a Nitroglycerin pill (sublingual) and we drove to the next stop to give it a chance to work.  It did not seem to help.

She described the pain as a heaviness in her chest rather than a sharp or focused pain.  I recognized that as the Congestive Heart Failure sort of description of discomfort.  We stopped at the house to pick up a couple of things and headed off for the Emergency Room.

Sure enough, she was in heart failure.  There was Pulmonary Edema, fluid build up in her chest.  There also were slightly elevated heart enzymes which could indicate a heart attack of some sort.  The blood tests since then have indicated that there was not a heart attack, just the Congestive Heart Failure.

She was admitted so that they could go through the normal series of tests to check things out.   Of course, since it is a weekend, any tests other than xray and blood tests need to be done on Monday.

Hospital stays are dreaded not because there is something wrong with the hospital or the staff.  One problem is that the complexity of Mary Ann’s cluster of problems and the many medications taken at very specific times are hard to handle with rotating shifts and rules that are constructed to cover any liability for mistakes. That complexity demands my staying with her in the room 24/7 until she goes home.

As usual, she was up the entire first night.  And, of course, so was I.  Gratefully, she did sleep much of the night last night.  I had anticipated being up all night every night, so getting some sleep last night was a treat.  Of course there were very many times during the night that vitals were taken, blood was taken, and various other activities woke us up often.

Getting the meds from the hospital pharmacy is tedious and frustrating.  There are patterns that need to be followed that sometimes result in the timing of pills changing in ways that don’t make sense in terms of the result that is sought from taking them. The staff has been willing to accept my input, making that issue less of a problem.

The doctors are tugged in so many directions with emergencies often tying them up for long periods of time (a good thing for those having the emergency) that there is no knowing when they will come in for the report, to answer questions and give instructions.  As a result those of us who are Caregivers have to remain in the room until they arrive — no matter when in the day that turns out to be.

This morning we are waiting for the doctor to tell us if Mary Ann will need a heart cath (unlikely at this point).  Just in case the test is to be done, she can have no food or drink.  It is after 9:30am (10:30am according to her body clock since the time changed yesterday) and she has been begging for food or drink since about 6:30am.  She was pretty tired and unresponsive yesterday, so had very little food, only a couple of snacks.

One of the most difficult problems to negotiate at the hospital is that the combination of the stress, lack of sleep, medication changes, and the changed routine results in lots of confusion.  The hallucinations increase.  There have been lots of people in the room (not actually here), needles, threads, water, and just a few minutes ago, a ten dollar bill on the floor.  After confirming that it was not there, I suggested that she keep working on that one and make it a twenty.  She immediately responded “greedy.”

Sometimes in the past she has gotten pretty resistant, sometimes unwilling to do what she is asked, sometimes pulling out tubes, getting almost belligerent.  This time there has been just a little of that, at least so far.  It has been manageable.

Our Son, Micah, came for most of the day yesterday, so I had a chance to go home and shower.  It was too bad she was not able to stay awake or respond much to him.  She still appreciated his presence.  They have a good time together.

I am pleased that there is wi-fi here so that I can check email and write this.  Last night the connection was going on and off so often that I never did get this finished and posted.  I was too tired to keep waiting for the connection to return, so I gave up and fell asleep.

That is all I will write for now.  We hope to be home soon, but will, of course, deal with whatever comes.

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

 

August 7, 2009

Restless Night

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , |
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There is no clear and consistent reason that is obvious to either of us that explains the restless nights that come at random — and far too often.  Sometimes there have been a couple of long naps during the day that might explain it.  Not this time.  Sometimes there is caffeine later in the day; there was a little in the mid-afternoon.  Sometimes there has not been enough in her stomach, occasionally due to poor timing of an ice cream treat, stealing her appetite for supper.  Sometimes there is an activity the next day that has caught her attention and refuses to allow her to relax.

Sometimes it is the hallucinations.  That was the presenting reason two nights ago.  When I was using the monitor to watch, her head would lift up quickly and the she would look intently at something.  Her head moved in that way every minute or so, often less than a minute.  Often she would be up on her elbow, many times up and sitting on the side of the bed.  It lasted until some time between 3:30am and 4:00am.

The hallucinations were the usual ones, animals, threads, needles, people.  While I recognize there is a disease producing the problem, nonetheless, I got more frustrated as the night wore on.  There was, of course, no reasoning away the hallucinations.

Not long after we both finally got to sleep (a couple of commode trips during the sleep time), it was time for me to get up, since Wednesday morning is the Spiritual Formation group that meets on the deck at 7:30am.  I get up at 6:30am each Wednesday and move as quickly as I can to get myself showered and dressed, the coffee made (the most important task), set up the deck, get Mary Ann’s pills and yogurt and ice water and granola bar opened.

Normally on Wednesday mornings, I set up all the above items in the bedroom on a table next to her transfer chair so that if she wakes up before the group is done, she can get her pills taken and food in her stomach on her own.  She almost always sleeps until the bath aid comes around 9am.

Not yesterday!  After being awake and active until perhaps 3:45am, she got up shortly after 7am.   As a result, I needed to stay with her rather than go out to join the group.  After about forty-five minutes, she chose to get back into bed for a while.  I was able then to go out and participate in the group for a time.

It is embarrassing to admit how selfish I am, but I was mostly concerned about the pain in my back and the fact that both the night and my morning were being stolen from me.  I should have  been  more concerned about the challenges the day would bring Mary Ann, since she would be tired and the hallucinations would be worse  than usual.

The day went surprisingly well yesterday.  I began this post last evening but was too tired to finish it.  I just shut down.  We both got a decent night’s sleep last night.  For a few hours today, we had the wonderful gift of a young lady who lifted the wheel chair in and out of the car for a grocery store trip and our Parkinson’s Support Group meeting.  Since then a challenging commode trip and return to bed has irritated my back again, but it still seems to be improving some.  She appears a little restless at the moment, but I hope for some rest tonight.  As always, we will just see what tomorrow brings.

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

 

July 30, 2009

What is it like for Her?

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Below is a link that may need to be cut and pasted into your browser to open.  If you are caring for a Loved One with dementia of any sort, I suspect you will find it both poignant and painful — at least I did.

http://d.yimg.com/kq/groups/7465654/785021372/name/What%20is%20That.wmv

One of those on the Lewy Body Dementia spouse Caregivers’ online group reported that her Loved One asked their adult daughter,  “I don’t know what’s wrong with me or what is going on, will I ever get better?”  She wondered what she could say to him. 

Another of the members of the group who is caring for his wife and has the gifts of perception and writing replied to that post.  I asked his permission to share his words in this post before I included them here.   This was his reply:

“[My wife] asked the same question several years ago, with the same answer and result…
 
…Their entire world around them is shattering, but somehow, they see themselves as a calm center in a whirlwind… that is why it is so hard for them to realize it is them that is having the problem and not the world around them…Think about it, what would be your reaction if things you saw, people told you  were not there…people tell you that you are doing things that you don’t remember…people and places from the past appear again..even though you “know” that they cannot be???, but there they are…you just want to get away from it all…people tell you what to do, when to do it and want you to be the same as before, but you can hardly see why…..Oh, I just feel so bad for our LO’s..and I am gradually learning even after +6 yrs of this that …oh hell, I’m just as lost as ever..maybe just foolin’ myself that I know anything about anything…”
Of all people, this Caregiver Spouse, knows very much about caring lovingly and gently in the face of whatever comes.  All of us in the group have great respect for his wisdom and insight.
One of the members of the group struggles with what the doctor suggests is more about control than it is a symptom of the disease.  Her Loved One shuts his eyes sometimes when being urged to move along and cooperate.   Is that a passive-aggressive way to exercise some control in the situation, or is it just an involuntary act triggered by some misfiring neurons due to the disease?
I cannot even imagine that there is a Caregiver out there who has not wondered if some action or inaction, some slowing down of movement, some lack of verbal response is the result of the disease process or a product of a strong will refusing to cooperate. 
Mary Ann lives in a world in which, for the most part, I have control of what she does and doesn’t do and when she does it.  The style of our relationship has always been and continues to be one in which I work very hard at determining what she wants.  I think it is fair to say that I also try to find some way to fulfill that want if it is physically possible to do so.  Now, lest I sound wonderfully accommodating, I often either use far too many words along with some attitude to tell her why it isn’t possible, or I do it begrudgingly and then grump about it.  So much for sainthood!
When I watched that short video that is referenced at the beginning of this post, when I read the online post quoted above, I was reminded of just how difficult it is to be in Mary Ann’s position or that of any of our Loved Ones who have to depend on a  Caregiver.  Mary Ann is a strong-willed, independent person.  Actually, they can be pretty annoying character traits to a spouse.  Since I have at least as many annoying traits, we have actually done very well together.  She has always had a bit of a chip on her shoulder, not about to be pushed around by anyone.  Now she has to be pushed around in a wheel chair by me.  
What must it be like for her to have someone watching her every minute, jumping up and running to accompany her to wherever it is she is intending to go, suffering the indignity of having someone else clean her bottom?  What is it like to have someone telling her that she cannot use the knives and hot stove, that she cannot go down to the basement to look for something?  I can imagine that she just wants to scream, back off and give me some space.  “I’ll tell you if I think I need you.”
Then there is the frustration of not being able to follow every question asked of her and formulate an answer based on what she wants or needs.  The book “Life in the Balance” by Dr. Thomas Graboys was an eye-opener for me as he wrote how hard for him it was to try to interact verbally.  His Parkinson’s and the Dementia were impacting his ability to process information, form thoughts, put them into words in his mind and then, finally, actually get the words out loudly enough to be heard and understood.  By the time he accomplished all that, the conversations would have moved on to the next subject.
For those of us who are Caregivers, especially full time Caregivers, it is often very difficult to differentiate between willful resistance to our attempts to get cooperation and the progression of the disease process in our Loved One.  Whichever it is, putting their shoes on for a moment can help us gain some perspective and understanding.  Maybe by doing so we can lower our frustration level just a bit  and find some more patience as we say for the twenty-first time, “It’s a sparrow.”
 

July 25, 2009

We Can only Live the Life We Have.

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , |
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For those following Mary Ann’s battle with fainting, while I had hope that the higher dose of the medicine that raises her blood pressure to reduce the problem was working, it hasn’t done so well yet.  The fainting continued yesterday.  Today, there was very little fainting.   We will take this a day at a time, and hope that the medicine begins to improve the quality of life.

Speaking of life, there have been a number of interactions on the Lewy Body Dementia spouses online group about quality of life issues.  There are so many brave souls there who have been caring for spouses much more challenging than Mary Ann.

In a post on that group’s site, I mentioned that I had re-framed my life so that I now understand my job to be the care of Mary Ann.  I don’t mean that in a way that makes any less of our being husband and wife.  It is a way for me to think about the tasks I do that gives them meaning and purpose, rather than seeing those tasks as an interference with my life.

There were a number of responses from folks that seemed to struggle with that idea.  They also commit themselves to caring for their Loved One.  Some do better with that care by thinking about the life they hope to lead after their Loved One is gone.  That provides hope that gets them through the tough time.

There were some who observed that whatever our reasons for doing what we are doing in caring for those with a Lewy Body Dementia, we will finally in the end, lose.  This journey will end badly.  In that group we all give one another permission to share our frustrations openly without judgment.  We need a place to do that, especially those who are in the most difficult times in the progression of the disease.

With that said, no matter how devastating and hopeless the situation is, it is, finally, the life we have.  What will or will not be so at some unknown future time, while it can provide some sort of light at the end of the tunnel, is not yet the life we are living.  It may or may not come to be so, but it is not so now.  We are left to try to figure out how to do the best we can with what is so right now.

My intention is to use every resource at our disposal, to fill our lives with meaning and satisfaction.  I am not willing to let meaningful living wait until some future time that may or may not come.

Whether it is a good or bad approach to life, there are lots of things I might have liked to do that I have let go of as options.  They may never be options.  I can feel sad about that, mad about that, fight the unfairness of it all.   In fact I may need to give myself permission to have all those feelings.  Finally, for me, there is neither the time nor the energy to give now to things that may or may not come.  The life we have right now needs our full attention.

Most of the things I am not now doing, singing, traveling, going on spiritual formation retreats, going on bird watching outings, doing part time ministry, volunteering, attending music events, all offer lots of possibilities for entertaining, satisfying experiences.  They are not, however, in and of themselves, the means for bringing fulfillment into my life.  The are the context in which meaning can be found.  Meaning is what we do with the life we have, how we view it, what we take from the context.  Obviously some contexts are harder to live through, than others, some have more pain included, some take more effort to find the meaning, but the life we are living is the one we have.  If there will be meaning and purpose, it needs to be found in that life, not the one we wish we had.

In the sense that it is a certainty that sooner or later death will come, yes, the journey will end badly.  In that same sense, it is true for all of us.  Eventually, we will die, so will those we love.  Today I preached at the funeral of a friend who died at the age of 93, after living a life filled with obstacles to overcome, a life filled with wonderful, poignant, entertaining stories.  Life does end in death.  That is just the way it is.

No matter what our circumstances that end is still awaiting.  Either we accept it and live meaningfully in spite of it, or we allow the fear of death to overwhelm us and steal the joy from the moment we are in.

We happen to have a perspective on life that allows that there is something more than meets the eye.  We understand there to be a Someone with whom we are in relationship, a Someone who provides love and security not bound by finite limis.

With that perspective, we can concentrate on living the life we have as it comes day by day without despair if is doesn’t happen to be the life we would have chosen.

We would not have chosen the life we have, but it is our life.  Each day brings with it challenges, joys, sorrows, relationship struggles and satisfactions, and the opportunity for finding meaning in what we are doing.  Again, it may not be the life we would have chosen, but it is the one we have, the one we will live to the fullest.

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

 

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