September 6, 2009

Caregiver’s Life Preservers, Vol. 2

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The power of music to calm, to stir, to break through defenses is a wonder to behold.  An hour each of the last two evenings sitting in front of the audio system listening to music after Mary Ann has gone to bed has been time very well spent. 

For me, almost immediately when the music begins, it is as if all the frustrations and harsh realities of the day no longer exist.  Mind you, it has to be what is in my estimation, good music.  If it is trite, or shallow, or poorly performed, I simply have to turn it off and put in another CD.  Of course music is a matter of taste.  What grabs one person might repel another. 

I generally cannot use music as a background to doing other things.  Maybe it is the structure of my brain in particular, but I pretty much need to do one thing at a time.  I either read or listen to music, very seldom do I try to do both at the same time.  When I used to walk neighborhood streets for exercise, I could listen to a CD as I walked.  If I am out in the woods walking, I listen to what is around me.  I am not interested in blocking that out with music. 

Since we are homebound so much of the time and the television is going almost constantly, having an hour just for music is a luxury.   While I usually become engaged in what is going on in the music and immerse myself in it, there is often a journey on which it takes me.  That journey takes me through my defenses, on past the frustrations of the day, into layers of being that are closer to the core of who I am.  Not always, but often, I begin reflecting on very basic issues. 

The place to which the music often takes me is a place where I can wander around in my mind and heart, looking pretty directly into my failures and weaknesses, feeling the pain.  It is not scary or depressing, just real.  There in that core of who I am lives the Grace of God.  It is surrounded in that Grace that I am able to peal away the layers behind which I hide, even from myself.  When finally the journey has taken me through the last layer, there I find a sense of security and safety. 

Don’t misunderstand.  This is not always pleasant.  The place to which I go is not always a happy place.   Often the worst of what lives in me is exposed.  I certainly don’t always like what I see.  It is just that whatever it is does not have the last word on who and what I am.  The spark of life given to me with every breath comes from a Someone who wants me to be — whoever or whatever I am.   I have to say that more often than not, no matter what I have seen on the journey, I find it exhilirating and refreshing.  Maybe in a sense it is a way to reboot my mind and heart. 

All of us are coded differently and find renewal in different ways.  Our life preservers vary.  What is common to all who are full time Caregivers is the need for life preservers to hang on to regularly so that we don’t drown in our challenges and frustrations. 

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

 

September 3, 2009

Caregiver’s Life Preservers

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There are just a handful of us, usually four, who gather on the back deck or in the downstairs when the weather is uninviting (this is Kansas).  We begin at 7:30am each Wednesday morning.  With the disjointed and erratic sleep patterns in our household, caffeine is a great gift from God! Hot coffee is the delivery system of choice — yes, even in Kansas on hot summer days (not many this year).

Our central purpose for that two hours is to grow in our ability to engage the presence of God midstream in our days, no matter what we are doing.  We are a little slow.  We have been at this for probably seven years now and haven’t yet gotten it worked out.

That Spritual Formation Group time is one of my life preservers.  It is not a therapy group.  We have a book with readings and reflections to spark our thinking.  We do not understand life to be divided into compartments, one sacred and the other secular, or one physical and one spiritual.  We understand life to be one thing, and God to be its source and sustenance.

For whatever reason or reasons, this is a particularly unsettling time for me.  I am grateful for the lifesavers that are available to me.

One of the lifesavers is the sanctuary that is emerging behind our house.  The deck has always been an inviting place.  While it is probably no more than thirty feet from the back of the deck to the wooden privacy fence separating us from the next subdivision, there are now many good sized trees filling that space, some that we planted.  The trees and the view to either side extend pretty much without obstruction for the equivalent of at least a couple of blocks.  The fence behind us is up a fairly steep incline.  The combination of that hill, the fence, and the trees create the feeling of seclusion.

The multiple bird feeders and those who dine at them add to the sensation of an outdoor sanctuary in the woods.  Then there is the waterfall.  Four levels cascade over well placed rocks, each level adding to the volume of that wonderful sound of falling water.  That sound covers some of the people and vehicle sounds, feeding the sense of seclusion.

Some friends, Doug and Marikay, brought over additional plants for the wetland area created around the waterfall.  They also brought an old branch and placed it on the gravel base among the plants and rocks.  I am intrigued by that old branch.  It is certainly old — old enough to have patches of lichen covering it. The color of the lichen matches the lichen on the rocks and the color of the needles on the cypress tree that hangs over that part of the waterfall.

One of the things that intrigues me about the branch is the metaphor it provides for life, certainly the life we are living.  The branch is weathered and gnarled and without symmetry.  Any old farmer would have long since cut it up for firewood or burned it in a brushpile.  By the way, I like old farmers.  There is an old farmer living inside me — along with a young rebel.

With eyes to see it, there is an elegance and beauty that transcends symmetry and smooth surfaces and orderly shapes.  I wonder what that branch has seen, who has stepped over it, or climbed on it, or made its nest in it, what has marked its territory on it.  I wonder what stories it could tell.  Life as it is really lived is weathered, gnarled and without symmetry.  Trying to make life pretty and pleasing to the eye, wastes precious time needed to live it.

Our life is not pretty.  It is often smelly and ugly and messy, and certainly without a shred of orderliness.  It is also beautiful, deeply fulfilling, bursting with meaning and purpose, often emerging from the very ugliness itself.  I would not trade our cracks and crevasses and patches of lichen.

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

 

September 1, 2009

Missed the Parkinson’s Symposium

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I got up at 5:30am on Saturday, showered, dressed and was ready by five minutes to 6:00am to start the process of getting ready to go to Kansas City for the Parkinson’s Symposium.  We would have to be on the road by 7:30am to make it on time.  I had already complained to the Dr. about the early start time for the target audience who have mobility and sleep problems.  He said the issue was finishing before lunch.  Registration was at 8am and the program started at 9am.  Living an hour and a quarter away added to the time issue.

Since I thought maybe Mary Ann could get ready in an hour (normally including morning chores, the minimum prep time is two hours), I let her sleep another half hour.   At about 6:30am, as I helped her to the commode, she said, let’s stay home.   I knew it would not work to try to force her to go. 

I had initiated plans for a luncheon with friends in Kansas City to celebrate two birthdays members of the group were having.  I told her that at least we ought to go to KC in time for that meal.  After all, I had started the process of arranging the meal out.  She agreed.  We both went back to bed for a couple more hours. 

It was good to visit with friends of thirty-five years.  Even though we are only an hour or so from that crew, we end up getting together only four or five times a year, if that. 

For a variety of reasons, the weekend seemed to provide a number of reality checks that reinforced the level of limits on our lives and the concomitant sense of isolation. 

Sunday morning a Volunteer came.  Edie always brings whatever is needed to leave behind a full meal, very tasty, with lots of variety.  During the Volunteer time I headed up to the Lake for a while and then to the marsh below the dam.   It was a helpful time.  Feeling out of sorts and searching for some sense of renewal, the combination of devotional reading and sensory refreshment was especially meaningful. 

The book (about spiritual formation) is speaking to my need, providing the sort of intellectual framework that fertilizes my roots and generates hope for growth.

What flooded my senses provided the grounding in the natural world that helps me reframe my situation.  As I stood at the edge of the lake, the gulls spread over the water were screaming.  I have no idea why, but they were screaming.  I guess that is just the way gulls vocalize.  Nearby, one gull flew over another that was sitting on the water.  The flying gull made what sounded like some belligerent remarks, and the one on the water started screaming at the one flying.  In other places on the lake, occasionally one gull would crash land into another and a skirmish would ensue.  I don’t think this is mating season.  I will have to ask a birder what was going on. 

There were Cormorants diving for food.  A raucous Great Blue Heron flew by joining the conversation as he flew.   I watched a butterfly go by and come very close to becoming a snack for a Barn Swallow that just grazed it.   

The highlight was what I had seen last week and thought to be a juvenile American Bald Eagle.  My birding expert, whom I call Bob, after I reported the sighting, suggested that due to a flying pattern I descibed it might have been an Osprey.  This week the bird came close enough to confirm that is was an Osprey.  It had the telltale black mask on its face.  In fact it dove into the water right in front of me to get a fish — an unsuccesful fishing trip.  As I continued to watch, another bird appeared in the distance.  It also flew toward me, and I was able to determine that it was a second Osprey. 

I spent some time walking by the marsh, providing a little exercise, much needed.  The lifting and moving and turning of Mary Ann provides some strength training, but my life is pretty much void of any cardiovascular conditioning.  A combination of creativity and discipline seems to be the path toward better physical and spiritual health.  I am better at the creativity than the discipline.  I am way better at talking and thinking than I am at doing. 

We are in another restless night.  It has been no more than fifteen minutes between needs for the last two or three hours.  It is hard to muster the energy for moving from thinking to doing when very tired and tethered to another person whose needs are constant. 

Yesterday there was what felt like the start of the flu during the evening after church and into the night.  Chills came for a time.  Instead of writing a post on this blog, I went to bed in hopes of getting whatever it was to let go.  Since I simply can’t be sick due to Mary Ann’s circumstances, I got better today.  We will see what comes. 

This is a very thoughtful time for me, with lots of feelings converging.  My hope is that there will be enough time for processing, and that a healthier pattern of living will emerge.  At the moment, I am shutting down.  It is time to get to bed!

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 28, 2009

So Many Thoughtful and Helpful People!

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The phone rang this afternoon while Mary Ann was napping.  It was a former parishioner who was in trouble.  She and her husband were struggling with what to do.  They had eaten all they could of the wonderfully decadent chocolate dessert and were at a loss as to what to do with the last two pieces.  Could they bring themselves to throw them away???

When she finished describing their distressing situation, I made a remarkably generous offer.  You may not believe the level of my generosity, but here is what I offered.  I just blurted it out without even thinking.  Isn’t that the way heroes often describe their heroic acts — “I just did it without thinking.”  I told her that Mary Ann and I would eat those two pieces of dessert for her!!

She was so grateful, she and her husband brought them to our house.  It just feels good to do something to help other people when they are in need.

Last week I left the house on Tuesday evening to spend some quiet time away while a Volunteer spent time with Mary Ann.  There was one garden tomato left from a number that had been given to us.  By the time I returned that evening, there were thirteen with the a call promising more the next day, raising the total to twenty-one.  There were zucchini, a squash, a melon that had been delivered with the tomatoes that evening.  The next day the promised tomatoes came, plus some additional ones from a Volunteer who just brought some with her.  I have already eaten most of the tomatoes, and another ten came on Sunday.

Monday evening of this week after being out for a while, I came home to find a warm cobbler fresh from the oven that a former parishioner had delivered, along with a small vase filled to overflowing with brightly colored blossoms.

Today I was treated to lunch out while a Volunteer spent time with Mary Ann.  That is a monthly treat.

In the last fifteen days there has been at least one Volunteer at some time during the day on eleven of those days.  While schedules don’t usually allow Volunteers to come quite that often, it is overwhelming to think about how many people break open their busy days to make room for time at our home.  It is quite humbling to see just how thoughtful and generous people are.  The hours that Volunteer Coordinator Mary spends just scheduling all those people is a testament to that generosity.

It is hard not to feel guilty in the face of so many people in circumstances like ours, often in much more difficult circumstances, who don’t have a cadre of Volunteers and a Mary to schedule them. There are so many who are trapped in their own homes most of the time because one or both is suffering from chronic illness.  Those days when there are no Volunteers, or Mary Ann is having a bad day that keeps us in, or I have gotten sick, we have a taste of that kind of confinement and the loneliness it brings, the sensation of helplessness. As difficult as it is even with all the Volunteers, the thoughtful and generous people that surround us — as difficult as it is to manage full time caregiving, it is hard to imagine the challenge of that caregiving without support.

If you know someone in circumstances like ours, give him/her a call and ask, “What can I do to help?”  If they can’t think of anything when you call, offer to come over and help them make a list of answers to give people when they ask that question.  Then offer to check around, contact some folks who might be willing to help, ask them what on the list they would be willing to do, and schedule the doing of that task.

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 27, 2009

Raccoons: Running out of Names

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Apparently I have miscounted!  It is not only Gus, Belle and the Twins who have been feeding at the wildlife sanctuary that serves also as our back deck.  They eat the food I put out for the birds.  When the fourth one was in the trap two nights ago, I saw another one coming over to commiserate.  Apparently, the twins have an older sibling, uncle, aunt or cousin. 

Yesterday morning, number five was rummaging around in the trap.   I noticed that he had a darker coat of fur than the others.  He seemed a little bigger and somewhat more active.  Tim reported that it appeared to be a very aggressive male.  He had managed to pull the sheet metal holding the handle down into the trap.  He growled at Tim all the while he was handling the trape.  The others had not done so.  We are guessing that it might very well have been Gus. 

I put the trap back out last night, in case there are more.  No one showed.  It is out there again tonight.  My hope is that the entire family is now reunited in the lush corn field to which they have been relocated.   This adventure has been a bit of a distraction for this Caregiver.   I have used the nighttime trips to the commode as Raccoon check time.  Somehow it helps make the usually frustrating nights a little more bearable. 

Just an update on the sleepless nights:  Last night Mary Ann slept like a rock.  She was sound asleep until I talked with her a few minutes before the Bath Aide arrived around 8:45am.  She does seem a bit restless yet tonight, but I am hoping sleep will come soon.  I was up early to prepare for the Spiritual Formation Group that meets at our home at 7:30am.  Tomorrow morning would allow an extra hour or so of sleep.  My hope is that tonight will allow some catching up.  At the moment it is only a 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.

 

August 26, 2009

Sleepless Nights Increase Hallucinations

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It was 4am before Mary Ann finally went to sleep last night.  The hallucinations were vivid and constant.  The family of people and the raccoons were present much of the time, one or the other.  On two occasions I asked her whom she was talking to.  Once her answer was the raccoon; the other time it was the little girl (blue-eyed).  Today in what sounded like a lucid moment, she asked me if I was ever going to tell her about that family.  Needless to say, all I could do was respond that she would have to tell me about them, since she was the only one who could see them.

I have been going to bed early (for me) the last three nights in hopes that my presence in the bedroom might reassure her and allow her to settle.  She was restless all three nights for much of the night.  Last night it was constant until that 4am time.  She was up and moving and talking and shuffling around.  At one point, I turned on the bright overhead light with four 60watt bulbs and left it on for an hour or two in hopes that the hallucinations would be diminished by the visibility.  It did not work.  The light just made it harder to sleep.

What is an odd dimension to this time is that at least three people who have spent time with or talked with Mary Ann in the last few days have commented on how lucid and communicative she has been, more so than usual.  It makes no sense!  She is wasted, but more lucid at times.  When we are alone she is often so tired that she can hardly hold her head up, she often struggles to track interactions at all.

What makes this a little easier to deal with is the fact that what we are experiencing is not different from what many in the online spouses of those with Lewy Body Dementia.  Others in that group share often that their Loved Ones see and talk with people who are not there.  The group members refer to the lucidity with others as “showtime.”  Many of those Caregivers have to deal with others only seeing their Loved Ones when they seem very lucid.

One of my Brothers phoned to tell us of a tragic death in the extended family.  Mary Ann took the call.  She was apparently very communicative.  After the call she shared what had happened with the Volunteer.  When I returned home she shared with me what had happened.  I phoned my Brother and discovered that the death was of a different family member.  That sort of misunderstanding can certainly happen.  That kind of confusion in tracking what has been said is not unusual any longer.  When a good friend had told both of us about her daughter being pregnant, Mary Ann was convinced that her young Granddaughter was the one who had become pregnant.

What is, of course, a consequence of the sleeples nights is that not only do Mary Ann’s hallucinations get worse, but my stamina wanes and we shift from creating a good quality of life to survival mode, just getting by.  Today was a busy day, Mary Ann’s morning Bible Study had the first meeting for the fall, we had appointments for haircuts for both of us, we had an appointment at the cemetary, and a Volunteer came for the evening.  She did manage to get a couple of hours of sleep in before supper.  On the monitor, she appears to be restless again.  I am not sure I am up to another sleepless night.

The last couple of evenings Volunteers have been with Mary Ann so that I could head up to the spot with the view.  There were a number of deer to be seen, including a buck with a six or more point rack.  There were lots of bats and a few nighthawks.  I enjoy watching them.  I did a little reading — hard to do when sleep deprived (thank goodness for caffeine), and I listened to some music.

For a week Mary Ann has been taking a slightly larger dose of Seroquel which is supposed to control the hallucinations and help her sleep.  So far, the opposite has been so.  I will give it another few days, and if there is no improvement, I will increase the dosage by another increment suggested as an option by her Neurologist.  If that doesn’t work, I will fax the details of her status to the Neurologist with a request for other options that might have a chance of improving our quality of life.

As I mentioned in an email to my Brother, life is not for sissies!

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 12, 2009

Update: Raccoons

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Got one!  Now don’t worry, no one was hurt in the process, neither people nor raccoons.  It was little Tommy.  He couldn’t resist the tuna flavored cat food in the live trap.  Sister Sally, along with Mom and Dad, Gus and Belle, have yet to venture in and snap the door shut.  While I am sure he misses the family (who I hope will join him soon), he is clearly old enough to fend for himself.  Those paws and claws looked a little menacing this morning. 

There is a luxurious new home, laden with food, that awaits them as, hopefully, they are all relocated to a more raccoon friendly neighborhood.  I was fine with one.  It was a little too much, however, when Belle started bringing the twins along regularly.  Then when Gus came and stood his ground, taking ownership of our deck, refusing to allow his human host anywhere near the deck, the decision was made that a relocation effort would be undertaken.   I suspect he is at least twenty-five pounds of intimidating bulk.  It is a good friend with experience in relocating raccoons who is providing the equipment, the expertise and the transportation to their new home.  Thanks, Tim!

While we have finally had a bit of success in the relocation project, I am not altogether confident that the whole family will cooperate.   The first attempt netted only an empty cat food can and an unsnapped trap.  The next night drew no interest from the raccoons.  The third try ended up with an empty cat food can, a snapped trap, but no occupant.  It is only the fourth try that has resulted in a relocation. 

I have loved animals all my life; my Dad did before me.  He was a conservationist before it was popular to be one.  No hunters were allowed on the property, although he trapped muskrats along the creek for a while.  When we caught fish, they were to be released again.  He fed the deer.  We watched a raccoon, Goldie by name (golden colored fur), raise her family.  He would pat the chickens on the head when he gathered eggs.  He could call birds with his whistling, owls with his imitation of their calls. 

I love wildlife, but there comes a time when the issue is territorial.  This is my house, my deck, and my bird food!  Sharing a little is one thing.  Eating large quantities of very expensive food and camping out on my deck is another.  One guest is okay once in a while, but moving the whole family in permanently is another matter. 

I have no idea what this subject has to do with Caregiving.  If there is any relevance, it has to do with keeping this Caregiver healthy.  It has been a focus of attention, something different from the routine demands of our situation.  The sight and sound of the waterfall in the back yard, the sounds of singing insects, birds chirping and jockeying for position on the bird feeders, all provide a kind of accessible therapy.  The raccoon relocation project is just another distraction that engages my energy and attention here at the house.   I guess, if the deck provides deck therapy, maybe this project is raccoon therapy (therapy for me, not the raccoons!).

One additional benefit provided by the relocation of the raccoons may be their removal from the bedroom hallucinations.  If they are no longer in the neighborhood, maybe they will no longer be in our bedroom.

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

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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.

 

August 5, 2009

Caregiver Walking the Line

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Nine and a half hours each way, took me to the family reunion in Northern Illinois and back — one day driving, one day there, one day driving back.  There have been consequences to so much time driving.  I went by myself.  As the Reunion approached, Mary Ann’s increase in frequency and intensity of fainting spells made it seem pretty foolish to try to make a trip to Northern Illinois for the Reunion, then to Kentucky to spend time with the kids there, then back home to Kansas. 

Recognizing how much I wanted to see the family, Daughter Lisa and her family offered to come here and stay with Mary Ann while I drove to the Reunion.  They had a good time.  Son Micah and family came over to join them all at our house.  They had a mini-reunion of their own.  I missed out on it, but Mary Ann was the center of attention for the weekend — a wonderful treat for her.   

Actually she did very well.  Lisa reported that the nights went well.  The night I returned did not go so well.  When I said something about her behaving better at night for Lisa than for me, she simply observed that she knew me longer than Lisa.  She hasn’t lost her dry sense of humor. 

The time in Northern Illinios was well spent.  I arrived just in time for the Friday evening dinner celebrating two siblings and spouses’ fiftieth wedding anniversaries.  We noted that at this point the five siblings have logged 246 years of marriage between them (56, 50, 50, 4 7 and 43).  Add the years our parents were married (59) and the total grows to 305 years for six couples.  As one of the Sons-in-Law noted, that is a pretty good model for those who follow. 

In an album one sibling’s Daughter put together was a picture from our parent’s fiftieth wedding anniversary many years ago.  They were married in 1926.  I remember when looking at that picture of the whole family the first time I saw it in 1976.  Even though by then I was thirty-three years old (married with two children), it was the first time I realized that I was part of an extended family.  I am the youngest sibling by almost seven years.  I felt like an only child.  When I saw that picture, my whole perspective changed.  I became part of a family. 

We enjoyed our time together exchanging the same old family stories, laughing as if it was the first time we had heard them.   Saturday included another, less formal gathering and meal.  There was lots to be discovered about nieces and nephews, great nieces and nephews, great-grand nieces and nephews. 

Saturday also included time with one of Mary Ann’s Sisters-in-Law, renewing the connection with her family.   I would assess Mary Ann to be favorite Aunt Mary in that clan.  Two of her brothers are deceased and the third is estranged.  She has always felt close to her nieces and nephews. 

Later in the day, I got to spend time with one of Mary Ann’s lifelong friends and her husband.  Mary Ann is part of a foursome who became friends around the time they were in the Fifth Grade.  They have been fast friends since.  I, too, consider them (and spouses) to be friends.  However, when the four of them get-together, I head for the hills.  They immediately become four teen-aged girls, laughing uproariously. 

Everyone missed seeing Mary Ann, and I was disappointed for Mary Ann that she didn’t get to be there.  

When I returned Sunday evening, I was very tired, but basically fine.  As the day wore on yesterday (Monday), the consequence of all that driving emerged.  Apparently, some inflammation in my back was pushed over the edge by my return to the routine of assisting Mary Ann getting up and down. 

The pain is located right at the point that seems to serve as the fulcrum for my leveraging her up and down from a sitting position.  I do that many dozens of times in a day.  The level of pain reached a seven or eight on the ten point scale usually used by those assessing pain. 

The pain is problem enough.  What is more troublesome is the prospect of its not getting better, but rather getting worse, since Mary Ann’s need for my help does not diminish as my ability to help lessens. 

At the moment we are walking the line between being able to manage here and not being able to manage here.  Yesterday afternoon, without an appointment, I finally just stopped by the Chiropractor I go to when bone and joint pains come.  I prefer manipulation that targets the pain, to medications that impact the whole body systemically.  I am not averse to pain medications.  I just recognize their limitations and their side effects. 

Ice packs, Ibuprofen, and a second trip to the Chiropractor has brought the level of the pain down from its peak yesterday and this morning.   I have moved more slowly and carefully when helping Mary Ann  up and down, asking her to do more of the work in the process.  I have toyed with the idea of trying to call the church to see if I could get an older female teen or young adult who has pretty good upper body strength to work here at the house for a few hours each of the next couple of days at maybe $10 per hour, just to do the lifting part of the Caregiving task. 

My goal is to move away from the line we are now walking.  The other side of the that line appears to be far less workable than this side of the line.  In fact, it looks pretty frightening.   At the moment, we are in a precarious position, right on the line between doable and not doable.   

My impression is that the pain is lessening and healing is on its way.  Whether that impression will become a reality remains to be seen.  As always, we take one step at a time. 

I certainly celebrate a very comforting and positive relationship with my Brothers and Sisters and their Progeny.  The relationship with Mary Ann’s Sisters-in-Law and their families is also very meaningful.  The connection with Mary Ann’s “girlfriends” is one that is filled with love and laughter.  It is hard to feel down with so many good people who care and about whom we care.

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 14, 2009

When Caregivers Aren’t Well

Posted by PeterT under Daily Challenges, Meaningful Caregiving | Tags: , , , , , , , , , , |
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There is a vulnerability that Caregivers don’t care to think about.  What happens when they are not well?  The needs remain.

Today was a good news bad news sort of day.  Neither the good nor the bad was very dramatic.  The good news was that while Mary Ann did have fainting episodes today, they seemed less often and less severe than the last few days.  Even after having a fainting episode that normally would result in a long nap, she chose to stay up. She didn’t nap until the afternoon.

I had an errand that would have needed outside help to accomplish on time had she napped in the morning.  She was able to head out in the car with me so that I could do the errand.  We picked up some Long John Silver’s fish and chicken for her while we were out, came back and she ate it at home.

The bad news was the recurrence of the occasional bouts I have with Esophageal Spasms.  They are very painful, come without warning, and last many hours.  They just happen.  There is not really much in the way of treatment for it.  They don’t come very often, a number of times a year, and they are not really dangerous.  As far as I know they don’t do any long term harm.  The just hurt very much.  The pain is in the center upper chest and comes in regular waves with each peristaltic movement.  I think I remember learning that those movements are about eight minutes apart.  I haven’t measured the time between waves of pain.

When the spasms come to spend time with me, it is pretty tough to focus on anything else.  Eating or drinking is not an option.  If I am free to do so, I raise the head of the bed, turn on the television in the bedroom and hope there is something interesting to provide a distraction.  Current circumstances don’t allow that option, at least not for very long.

While there were some painful times today, the spasms were not as painful as they have been in the past.  On a scale of one to ten, they can regularly move to eight or nine and flirt with ten.  Today was close on occasion, but not that intense most of the time.

When those spasms come, the experience reminds me just how vulnerable we are and how fragile our system is.  A Caregiver does not have the option of saying, “I am not feeling well, so don’t need anything for a while.”

Actually, anyone who has served as the primary caretaker of their children knows exactly how this works.  When you have a cold or the flu, after the first wave of the kids wanting to do things for you, there is a return to constant demands from the kids for help, no matter how bad you feel.

I have to say that today went relatively well.  It was more just a reminder of how fragile our system is, how vulnerable we are should my health falter.

At least Mary Ann’s slight improvement today keeps alive the hope that this downturn is not permanent, or at least we may have bottomed out for the moment.  Again, tomorrow is another day.  We will see what it 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.

 

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