December 5, 2009

Outing Today and Caregiver’s Dilemma

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I am sure there are a variety of media folks trying to get a clear handle on the reasons for the continued success of the movie “The Blind Side.”  We saw it today.  It is the true story of an essentially homeless teenager, accepted into a family, finding his way to success on the football field.  Thematically, it seems to me like the story of Susan Boyle who has become a metaphor for a nobody being discovered to be a somebody.  It touches the longings in most of us to find fulfillment, to come into our own in a way that is clearly visible to others and, more importantly, to ourselves. I suppose it is the same reason that “The Man from Snowy River” has always struck a chord in me every one of the fifteen or so times I watched it in former years.

I am not really sure how Mary Ann felt about it.  Her comment at the end was, “Did we end up in the wrong movie again?”  The last time we went to a movie, she had gotten in her mind that there was another one we were going to see.  When I asked her what movie she thought we were going to, she referred to an interview this morning on the television with Robert DeNiro about a movie he is in.  I did not see that interview.  In both cases, I had only talked about going to the movie we saw, and had not at any point mentioned the other.  At best, communication is a difficult thing.  Since Mary Ann is not verbal, it is hard to know what she is thinking.  I talk enough that she needs to tune it out.  As a result, I can say one thing, and she can have something completely different in her mind.  It is hard to know how many of the miscues are simple communication problems and how many are precipitated by the dementia that has begun to show its face on occasion.

On another note, there is a dilemma emerging that impacts my role as a Caregiver.  In a matter of about 48 hours, I received three overtures that would ultimately involve commitments of time.  Committing time to something other than caring for Mary Ann is no small matter.  I have seen just how stressful it is to have time pressure enter the picture when Mary Ann’s needs come without warning, often demanding immediate attention.  I can’t count the times I have had to get off the phone or at least excuse myself for a moment, when Mary Ann popped up and headed toward the bathroom.

It became clear very soon after I retired, that I could not count on being able to keep commitments if I made them.  Every commitment had to have an easy way out, in case Mary Ann’s situation demanded my attention.   Even tasks that don’t have appointments to keep pretty tough to accomplish, since the tasks that come with the caregiving role, make it tough to get a long enough block of time free to concentrate on anything else.  Those who volunteer to spend time with Mary Ann have busy lives of their own.  There are not a large number available to cover multiple times for meetings or whatever.  The cost of using paid Companion Care from the Agency we sometimes use prohibits making many commitments.

If I add commitments that use up all the time covered with Volunteers, I may as well go back to work.  One reason I retired was that it was too hard to move between working and caregiving wtihout time for rest and renewal.

With all that said, there must be something else going on in my thinking, something of which I am not fully aware that has caused me not to immediately decline the overtures.  I have accepted one.  It allows a great deal of flexibility and is likely to be very satisfying.  It is simply providing a sounding board for a friend from a former time.  While I may decline the other overtures, I am actually considering them.  I know too little about them yet to actually make a decision.

I suspect that part of the reason I have not dismissed the overtures out of hand, is my need to feel useful outside of my caregiving duties.  It is challenging to realign my thinking and feeling to be able to feel fulfilled and valuable without external validation.  At a spiritual and intellectual level, I can find fulfillment without affirmation.  My insides, however, are not so mature and selfless. At the very least, it is nice to have been asked.

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.

 

December 4, 2009

Eating Out Remains Difficult

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The meal was good.  The eating was not.  Mary Ann got some food eaten, but not very much.  She would let me cut the meat and break the dessert’s crust into bite-sized pieces, but, again, she would not let me help her by feeding the food to her

This public place was tonight’s Parkinson’s Support Group Holiday meal.  Since everyone there is either a Caregiver or the one with Parkinson’s, I hoped Mary Ann might be more willing to allow me to help.  Not so.  The meal was catered by folks who do a nice job on the food.  They also had extra servers, more than would normally be needed when using a serving line.  The extra servers helped those of us who were trying to carry plates for two and those whose dexterity is limited.

We sat across from former parishioners that we have known for many years.  He has had Parkinson’s much longer than Mary Ann.  We enjoyed the various conversations. I guess to be more accurate, i enjoyed them.  Having retired from a profession filled with hours of converations and interactions with others, retirement has put a crimp in my opportunities to talk with folks.  As a result, when any opportunity arises, it is hard for me to shut up!

While I always tested very well in the quanitative portion of the standardized tests, the verbal scores were not quite as high.  That seems pretty odd to me since my life has always been about words.  I always loved words.  I used them to get out of fights with bullies (it helped that when I was in elementary school I was among the tallest and strongest of the kids  — I am still the same height I was in the Sixth or Seventh Grade).  I loved learning to use big words, always making sure I used them correctly.  Some people express their sadness with tears, their anger with violent actions, their frustrations by acting out, their happiness by shouting for joy, I talk.  I think and analyze and process and then frame the feelings with large quantities of words that help dissipate the pent up nervous energy created by the feelings.

At the same time, I love solitude.  I can spend hours just soaking in everything about the moment and the space I am in and the thoughts that fill my mind, often bumping up against one another.  I love the periodic retreats that provide almost three full days of utter solitude, walking, watching the wildlife, gazing at the clouds, smelling the scents, reading, thinking, journaling.

I guess what precipitated the above diversion from Mary Ann’s challenges  to my love for words is the fact that I need the time out with others more than Mary Ann does.  It is part of my therapy.  I am usually pretty ambivalent when outings are approaching, wanting to stay home to avoid the hassles associated with going out.  But when I get to the gathering, I thoroughly enjoy the interactions and conversations.

Back to Mary Ann’s struggles with eating.  When I asked Mary Ann about lunch today, she said she wanted BoBo’s for lunch. The Food Network’s Diners, Drive-ins and Dives did a special on BoBo’s.  We didn’t really have time to go into the diner to eat (it is the size of a postage stamp), so we got take-out from a drive-in stall.  I have to admit that it was a bit of a relief that we did not have time to go in.  One reason is that I wanted to eat the food we already have in the fridge (my frugal streak).  The second reason is that I have a hard time watching Mary Ann eat when the soft fish sandwich with tartar sauce is squishing through her fingers, dropping on the table, her clothes and the floor.  There, I said it!  I am ashamed to admit it.  Here she is struggling to deal with all she has been through, just trying to enjoy food that brings her pleasure, and I am so petty as to let a little messiness disturb me.

If we had had time, we would have gone into the diner to eat.  At least I usually don’t let my aversion to the messiness keep me from taking her out to whatever restaurant she chooses.  I am trying here to salvage a little positive self-image after admitting to such pettiness!

Mary Ann slept well last night — good for both of us.  She went to bed a little late tonight.  Let’s hope for a night filled with sleep!

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 24, 2009

Caregiver’s Self-Care and Excuses

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Mary Ann’s day seemed to go reasonably well.  There was no napping, although a few times during the day her head hung pretty low, resting on the arm of her transfer chair.  Each time I asked her if she wanted to go in the bedroom and nap or stay out in the living room, she opted for the living room.

Zandra, her bath aide, came this morning, but she was pretty sleepy through the shower and getting dressed.   By lunch time, she was open to going out to get something to eat.  She did pretty well with a hamburger cut into quarters.  She let me cut it into quarters for her, but she would not have tolerated my putting it to her mouth to help her since we were out in public.

After lunch, we headed to the grocery store.  As tired as she seemed, she loves going to the store and reminded me that I had mentioned that possibility.  It is still a marvel to me how it is possible for us to go through so much food, as little as Mary Ann eats.  A few items on the list always seem to grow to a basket full.

After supper (Mary’s pork, dressing and gravy), Mary Ann watched television for a while, went to bed, got up again to watch some more televison in the living room, then returned to bed, where at the moment she seems settled.

In between lunch and the grocery, we drove up to Cedar Crest, and while Mary Ann sat in the car, I took about a mile long walk.  That is the first time I have walked for exercise since before the trip to Hot Springs.

My excuses for not keeping up with the exercise walking that began a few weeks ago are legion:

First, there was a break in the pattern that had developed.  The trip to Hot Springs was the first break — about a week.  Then came the hospital stay.  The walking was beginning to take on the character of a habit before the break.

Then, the hospital stay wore us both out.  I was pretty tired when we got home.  Mary Ann was dealing with such confusion and a lower level of functionality pretty much precluding my leaving her to walk.

Those first days back from the hospital, she slept pretty much all day long every day.  I couldn’t leave the house for a moment while she was sleeping.

After a while, she was and still is often getting up pretty early in the morning.  Before the trip she was doing so well that I felt comfortable walking for about a half hour before she got up for the day.  I always made sure she had gone to the bathroom, and I put the Lifeline button around her neck.  When she gets up early, walking is not an option.

When Volunteers have come recently, once I did take a walk.  The other times, the weather has been bad, or I just decided I was too tired to do it.

The last few weeks after the hospital stay have seemed especially stressful.  That is my excuse for returning to eating endless snacks to provide a treat, or just give me something to do to self-medicate.

It is true that working out times to walk has been more difficult in these past weeks.  The trouble with that truth is that it is not the only truth in this situation.  I am a resourceful person.  With enough commitment and will power, I should be able to figure out how to get regular exercise.

And, of course, no one is shoving the food into my mouth.   If there will be food in the house or food on the table, I am the one who will put it there.  It is not as if I have no choice about what ends up on that table.

My excuse relative to food, is that I am trying to give Mary Ann things she likes and she needs lots of calories.  Of course, I do not have to eat the same thing she is eating.  It is my choice.

I have cancelled, at least for the moment, the exercise and weight control program at the exercise therapy clinic that I was going to begin after the trip.  After the hospital stay, Mary Ann was doing so badly for a while that I didn’t think it would work to try to have her with me, sitting in on an exercise class.

Mary Ann is enough better that I should be reconsidering starting that program.  Now with the holidays looming, that excuse has kept me from making the call to set the appointment.

Under the best of circumstances it is hard to develop and maintain a good set of self-care disciplines.  We are not in the best of circumstances.  All sorts of excuses to avoid good eating and exercise habits are readily available.  The irony, of course, is that good eating habits and good exercise habits translate directly into feeling better and being better able to do the task of Caregiving.  Sometimes we are our own worst enemies.

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 22, 2009

Update and Local Art Museum

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , |
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Mary Ann got up early this morning since she had no supper last evening, other than a couple of snacks during the night.  She ate a good breakfast with help, took her pills and ended up back in bed for almost four hours. 

She ate a pretty good sized lunch, and we spent a while just sitting with the television on.   Actually, I tend to be up and about doing anything I can think of to keep from just watching television.  I was back and forth to the computer, outside to check on the birds, got the mail, paid some bills. 

Finally I asked Mary Ann if she would be willing to head out for a bit, even if she just sat in the car while I did a couple of things.  I had mentioned that I wanted to visit a small but nice art gallery on a local college campus.  Our deal was that I would just go in for a short visit, assuming she wanted to stay in the car.  That seemed to be her intention.

I had reached the point in the day that I just could no longer tolerate sitting around the house on a warm day, cloudy, but warm enough to be out.  Gratefully, she decided she would go into the art museum with me.  It took a while to find the handicapped entrance, on the opposite end of the building from the handicapped parking places. 

Once inside, there were two major exhibitions that were very interesting.   One is called “Stickworks.”  It is pretty much indescribable.  There are huge sort of huts on the lawn of the museum.  People can walk into and through them.  They are made from intertwining saplings into surprising shapes and structures. 

Inside the museum are photographs of one after another sculptures made with willow branches and saplings, each stretching the imagination more than the last.  Even though they are two dimensional photographs, the sculptures seem almost living.  That room in the museum left me wondering how someone could even imagine creating such unusual pieces.  The link for the artist is http://www.stickwork.net/news.php

The next exhibit made the one I just described seem quite ordinary.  It was called “Hybrid Visions” by Ken Butler.  An article online from the university described what he does in this way:  “He is internationally recognized as an innovator of experimental musical instruments created from diverse materials including tools, sports equipment and household objects.”

This exhibit has to be seen to be believed.  Ken Butler takes everything from the backs of old wooden chairs to a laptop computer and creates musical instruments that, apparently, can be played.   This is impossible to describe because no one who has not seen it would have existing in their minds reference points to which to relate the descriptors. 

While this has nothing to do with Caregiving other than our getting out of the house, doing something stimulating to keep this Caregiver from going crazy, there is an odd sort of metaphorical implication for framing our existence in terms of the exhibit.  If it is possible to piece together found items that appear to have been gathered from dumpsters and front parkings on garbage day, add some guitar/violin/cello strings and make music, maybe we can piece together a life of good quality and make our own sort of music. 

I think that interpretation is a little contrived and heavy-handed for something so whimsical as “Hybrid Visions.”  Oh well, remember, I spent forty years looking for sermon material wherever I could find it, so that the message of the Scripture readings could become more accessible in contemporary terms.  It is an occupational hazard.

Mary Ann has gone to bed and seems to be settled for the moment.  We will again hope for a quiet night.

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 21, 2009

Anosognosia — Say What??

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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Who knew there was a word for it?  The online caregiving spouses of those with Lewy Body Dementia (or some form of it) recently contained a line of posts titled Anosognosia.  Wikipedia defines it this way: Anosognosia is a condition in which a person who suffers disability seems unaware of or denies the existence of his or her disability.

Actually, those who have been reading this blog for very long, have heard me describe a variety of behaviors that could be described with the word Anosgnosia. 

When anyone asks Mary Ann about cooking, her response is always: “They won’t let me in the kitchen any more.”  What she seems to be saying is that she could cook and chop and handle hot pans and sharp knives and prepare meals, if only we (I) would let her. 

Mary Ann will often start to undress while standing up, even though for a number of years now, her balance and coordination have not allowed her to do so without falling. 

She has headed into the bedroom to get sewing paraphernalia to do repair work, most often on something that ends up being a hallucination. 

While I sometimes do it, I dislike reminding her that what she is attempting  is something she can no longer do on account of the Parkinson’s.  I think the better choice when confronting some attempt at doing something no longer within her capability, is to redirect her attention to something else. 

As troublesome as are the times she acts as if she has no limitations on account of the Parkinson’s, I can’t help wondering if they are not part of the reason she is doing so well.  As much as she has been through, it is hard to understand how she is able to do maintain such a high level of functionality in so many areas. 

Today went pretty well.  She slept in late, essentially tacking her morning nap on to the end of her night’s sleep.  She had a good breakfast, a fairly substantial lunch.  We went out for a ride to Ensley Gardens (I walked through them while she chose to stay in the car) and a treat at the Baskin and Robbin’s on the other side of town. 

Mary came over, brought the promised pork, dressing and gravy, and spent about an hour talking with Mary Ann while I worked at the computer.   Since I tend to be quick to respond in conversation, my presence makes it hard for Mary Ann to be engaged in conversation.  My leaving the room for a time allows her to interact more freely with friends. 

Again, she has gone to bed early, without supper.  I guess by now I should know that a mid to late afternoon ice cream treat is going to interfere with her eating supper.  I suspect she will be up to have snacks during the night.  I will, of course, need to assist in that activity. 

The last couple of afternoons (before today), I have left the house for a time while a friend spent time with Mary Ann.  I have spent the time in a different way from usual.  Rather than sitting in the car in some natural setting to read or listen to music, or going for a walk, I have visited a number of small art galleries here.  I am pretty much devoid of any knowledge in the area of the visual arts, but I am intrigued by them. 

At most of the stops at galleries, there has been a docent or artist or owner there who was willing to spend some time in conversation.  I have learned a bit about the art scene here, and how some of the artists have approached their subjects, what processes they have used.  It has been very interesting, opening a new window on reality for these well-worn eyes. 

The conversations have nourished a discovery I made decades ago.  There is more than what first meets the eye in most of what we see.  Whether it is a landscape, a city street, buildings, trash, telephone poles, growing plants in any stage, people, there are many ways to see them.  What artists often do is provide new ways to see the ordinary.  While I have no natural ability or inclinations in producing visual art pieces, my interest has been piqued. 

One of the artists described her fascination with shadows on the water in a pond or stream or lake.  The shaded area of the water’s surface reveals what lies beneath the surface.  Lighted areas show a reflection of what is above.  It is a phenomenon I have noticed when out walking with my binoculars around my neck.  Often I will look for those shaded areas to see if I can locate fish or turtles or frogs. 

In a couple of the visits yesterday and the day before, the descriptions of a particular art piece triggered the impulse to write and preach a sermon using the piece as a visual aid.  I had enough sense to spare the poor person describing the work from my launching into three part homily on the implications of that piece for their spiritual growth. 

One of the artists described her fascination with shadows on the water in a pond or stream or lake.  The shaded area of the water’s surface reveals what lies beneath the surface.  Lighted areas show a reflection of what is above.  It is a phenomenon I have noticed when out walking with my binoculars around my neck.  Often I will look for those shaded areas to see if I can spot fish or turtles or frogs.   That thought caused my sermon muscles to twitch for a moment. 

Maybe I can convince Mary Ann to consent to a trip into KC to the Nelson again.  There are rooms filled with art pieces, some incomprehensible, some boring (in the eyes of the beholder — me), some exciting, some very thought provoking.  They also serve a great lunch in the Roselle Court.  We will see.

After such a tough time post hospital stay, this one has been a pretty good week. 

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 16, 2009

Imagined Possibilities – A Moment of Sadness

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Today was a good day in most respects.  Mary Ann got up, ate, took pills and got dressed in anticipation of Volunteer Jan’s arrival.  Jan did her hair and nails, a real treat.  Mary Ann had eaten a good breakfast with some help.  Around noon she ate a half sandwich, chips, Pepsi, and large and tasty chocolate chip cookie that Jan had brought.

Mary Ann was up all day, watching football — her choice.  The Chief’s won!!! She was awake and mobile enough for us to go to the Evening Service at 6pm.  She ate a little supper before church and headed to bed shortly after church.

This was pretty much a normal day even by pre-hospital standards.  So far it appears that our new normal will include a little less mobility.  Eating by herself was a challenge before the hospital stay.  She now needs help much more often than before.  Walking unaided seems to be less of an option now.  It seems as if in most other areas, we are back to pre-hospital stay levels.  That is pretty encouraging.  I won’t deny that the last couple of weeks have been scary and stressful, with lots of fears about the possibility of not regaining any of what had been lost.

Maybe it was the barometer change today, but my time away this morning was not so refreshing as usual.  The rain did not allow the long walk that releases the mood-lifting endorphins.  I sat in the car enjoying the peacefulness of the rain at the lake, listening to a CD.  The Taizé Music seemed to open a certain vulnerability to thoughts and feelings that usually don’t have the time or space for attention with the moment by moment demands of the caregiving.

I am embarrassed at the self-centeredness of the thinking, but I have never pretended to be perfect — far from it.  I began thinking of who I am as an individual, separate from my role.  I thought of all sorts of things I have not yet experienced in life, things that most likely will never come to be.  I am not absolutely sure that I would really do some of them even if I had the chance.  That is why I titled this post “imagined Possibilities.”

Imagined Possibilities:

  • Singing with an Early Music vocal ensemble.
  • Spending a week of study and reflection at Holden Village.
  • Hiking a section of the Appalachian Trail.
  • Birding in New Zealand, hiking to see some of the waterfalls.
  • Seeing the Snowy Mountain region of Australia, visiting each part of that huge country.
  • Visiting Cornwall England and searching out my Father’s ancestral home there.
  • Visiting County Cork Ireland, from which my Paternal Grandmother came.
  • Heading off to Poland and Germany to see where my Mother was born (a German settlement in what is now Poland).
  • Spending time at the Taizé Community in France and singing the music, having a chance to serve as a Cantor.
  • Seeing some of the National Parks with my own eyes.
  • Going on Spiritual Formation retreats at various places in the US.
  • Probing with great minds the intersection of theology and Quantum Physics (at least listening and questioning).
  • Attending organ recitals and hearing great choirs and orchestras.

What is so selfish about all this, is that Mary Ann has lost the freedom to do so much more than have I.  This morning just opened a bit of sadness about what I might have imagined for myself.  I don’t know all the things that Mary Ann would like to have done.  Once I was asked where I would like to go if I could, and when I mentioned Australia, Mary Ann said she would like to do that too.  We have both talked about never having seen even the Grand Canyon.  We talked about going across Canada on a train, traveling to see the fall colors in New England.  We got to visit England and Northern Europe forty three years ago, and had talked about wanting to go back, especially to England.

I know intellectually, and most often viscerally, that life is lived wherever each of us is.  There is no need to be in some special, exotic place to live life to the full.  The grass certainly is not greener on the other side of the fence, as they say.  It was just a moment of imagined possibilities and some sadness at what will not be.  No matter what any of our circumstances are, all of us have things that are beyond our reach, things we cannot have or experience.  We can either face the loss of those imagined possibilities, grieve their loss and get on with life, or spend our precious moments stuck in self-pity.

I have the privilege of caring for someone I love.  There are so very many who would give anything to have that privilege.  I guess part of living this life to the full is allowing a moment of sadness into it.

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 12, 2009

Sleep! Sweet Sleep! Plus Physical Demands

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , |
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Whatever happens today, last night we both got a good quality, long night’s sleep.  Mary Ann is still sleeping.  It is a little after 9:30am.  Because of Veteran’s Day yesterday, Bath Aide Zandra did not come.  She has arranged to come later this morning, so Mary Ann will need to be up soon.

Later: Mary Ann made it up in time to get her meds taken before Zandra arrived. She has had another loose stool (sorry!) which has been happening for many days now.  It raises the question as to whether or not there might be some sort of bug causing some of her problems.  We will wait it out.  So far it is manageable.  i just want to be sure Mary Ann doesn’t get dehydrated.  Checking urine color (sorry again!) should provide evidence one way or the other on that.  We will not involve doctors and hospitals unless there is something clearly demanding that involvement.  If the weight loss continues, I will probably phone the GP’s office for a recommendation of a supplement.  Actually, I will also check with the LBD Spouse Caregivers online group.  They have far more experience with what works than any medical professional.  It seems clear that Mary Ann is just not getting enough calories in to maintain her weight.  Oh how I wish I could painlessly transfer about twenty pounds from me to her. I tried to get her to eat a some spectacularly sweet and tasty and moist cherry (homegrown and canned) and nut coffee cake that Maureen brought yesterday.  She just wouldn’t eat anything.  I, of course, had a huge piece.

After the intestinal activity, Mary Ann decided to lie down again.  She has seemed very tired since getting up this morning.

Gratefully, whatever strain lifting Mary Ann from the floor the other night seems to have been healing on its own.  The physical demands on Caregivers are often substantial and constant.  When I read the online posts of other caregiving spouses, I wonder how on earth they can do it.  Most of them are women, many of them my age or older.  Some of them have husbands who weigh two or three hundred pounds (one is a former heavy weight boxer).  I have no idea how they deal with the demands.  Many have a Hoyer lift to use when necessary.  We have one also, but have needed to use it only a couple of time in the years we have had it.

The physical demands of course include helping Mary Ann up from the floor when she falls.  Our system is not necessarily recommended by physical therapists, but has worked for us for many years.  When she has fallen, I work at sliding her (by pulling on her legs) into an open space where she can lie on her back with her feet toward me and her head away from me.  I put my feet together in front of hers so that they won’t slide, she reaches up and I take hold of her hands.  I rock back, using my weight as a counter balance so that my back is not involved in the process of lifting.

The risks in that approach are mostly to Mary Ann’s arms and shoulders.  Again, since she is not heavy and we have been doing it for so many years, her arms and shoulders seem strong enough to manage.  So far there have been no noticeable side effects to that process.

One of the movements that has created problems for me in the past, is that which is required to turn Mary Ann in bed and move her to the center of the bed so that she doesn’t risk falling off the side of the bed (been there!).  We have single, adjustable beds.  For many years she has been able to climb on all fours on to the bed and flop down one way or another.  She has come very close to flopping right off the edge of the bed on to the floor.  Now, most of the time she simply cannot negotiate that movement.  When she tries, she usually gets stuck on all fours on the bed or with one foot still on the floor, unable to move any farther in the process.

Now, most often she sits on the side of the bed, and if she wants to lie on her left side, facing the television, I cradle her and twist her in a sort of dramatic swinging motion until she is facing the appropriate direction.  Then I lean forward, slide my arms under her and pull her toward me to center her on the bed.  That is the motion that has caused back pain in the past.  Now, I squat down and let my body weight (lot’s more than her body weight) pull her to the center of the bed.

If she wants to lie on her right side, the side of choice for her, again, she sits on the side of the bed.  I let her head down to the pillow and reach with my right hand to lift her feet on to the bed.  Then I travel to the other side of the bed to pull her to the center.  Since the size of the bedroom does not allow much space between the two beds, I often can’t seem to get accomplished the motion using my body weight.  Most often, I slide my arms under and just pull her to the center with my arm muscles, a movement not unlike doing a curl.  Again, that keeps from involving my back in the process.

Now with that image in mind, imagine the nights she is up every few minutes.  One of those two actions of moving her to the center of the bed happens every time she gets up, even just to sit on the side of the bed.  When I watch her on the monitor, if she begins to move at all, I head in to see what she needs.  Sometimes she just needs to be turned from one side to the other, or the covers have gotten twisted out of place.

When we travel, the large beds pretty much preclude my reaching under her to move her.  I can do some manipulating to help position her, but most of the options are simply won’t work.  If I try to move her much, it puts my back at risk.  It won’t help her if I am debilitated.

At the moment, one of the activities that is the most risky for both of us, is the trip to the commode.  I pull her up to a sitting position on the side of the bed and pull the commode close enough so that it only takes a transfer with a few side steps to get her into position, pull down her Pj’s and disposable and get her seated on the commode.  That part is pretty straight forward.

The risky part comes when she is finished.  I pull her up and hold her so that she can use the TP I have handed her.  Most often, she just cannot balance well enough to stand on her own.  I hold her with one arm, feeling her weight against it, knowing that if I let go she would fall back down on to the commode and over the back of it into the wall (does that description ring of experience?).  While holding her with one arm, I have to reach down first to pull up the disposable (we call it a pad), which of course binds since I can only pull from one side, the other hand attached to the arm holding her up.  It is hard for her to remember and then to have the dexterity to move her knees apart enough to get the pad through and pulled up.

Then come the pajama bottoms next.  They have always gathered at her ankles.  Reaching down all the way to the floor with one hand while holding her with the other high enough to be above her center of gravity so that I can keep her from falling challenges my flexibility and strength.  When I think of it, I remove the PJ bottoms so that I can put them on her in a separate action while she is safely sitting on the side of the bed.

The commode trips come very often since one of the problems of a compromised Parasympathetic Autonomic Nervous System is the need to urinate frequently.  The last time Daughter Lisa stayed with Mary Ann over a couple of nights, she shared with me that she was pretty concerned about the risks associated with the night time commode trips.  Both of our children are very concerned about the precarious nature of our situation.  They recognize that it would not take much to mess up our system.  If I am not able to handle Mary Ann, either due to her physical condition or mine, a whole new set of challenges would emerge.  None of us wants even to think about it, although it is hard not to do so.

One other activity has become more challenging since the hospital.  There are more times when she can’t open her eyes, and/or is almost too weak to walk making the short trip from the door to the car pretty difficult.  If this continues, I will set up the aluminum ramps and roll her down the two steps to the door of the car in her transfer chair.  Oddly, steps are far less problem to handle than walking on a level floor to those with Parkinson’s.  Steps usually are her best thing.

While I need cardio-vascular conditioning exercises, I think I am getting plenty of upper body strengthening in this caregiving role.

It is still only mid-day, but this has gotten far too long — as have most of the recent posts.  She is still sleeping.  I hope to get her in the car and to the grocery store this afternoon.  We will see.

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 12, 2009

Visit to Former Life

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , |
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No, I do not subscribe to people having former lifetimes in other times in history.  Last evening I spent some time back in a part of my life that seems a distant memory even though it ended only sixteen months ago.  It is as if my forty years of ministry exists in a former lifetime.  There were feeling swirling around throughout the evening.

The fire happened three years ago.  I got a distressing phone call from the Rector of the Episcopal church, St. David’s, across the intersection from the church of which at that time I was the Senior Pastor.  I called Mary, who was willing and able to come over and stay with Mary Ann freeing me to rush over to check out our church and give Fr. Don some moral support.

It was arson.  The damage was extensive.  It was painful to see such an important place in the hearts and minds of so many people rendered uninhabitable in a few hours.  The vision of an elegant organ console charred and pipes melted, in a heap on the floor beneath the balcony is almost unbearable to those who have sung to that organ, whose spirits have been lifted by it for numbers of years.  I did not go in and see it.  I am remembering from the comments of some who did.

I had the privilege of being able on behalf of our congregation to offer support, a place to hold the first worship on the Sunday following the fire.  I will never forget that worship Service early in the afternoon, after our three morning services were concluded.  The church was packed with the members and friends of St. David’s Congregation.  There was a bond created that day that has since brought continuing joy to both our faith communities. The pattern of worship and the visual style of the worship rooms of the Lutheran and Episcopal traditions are virtually identical.  They felt at home in the worship space and we felt at home with the liturgy they used.

Last evening was three years later to the day in a journey that began in ashes and ended in celebration of an elegant and functional space for a faith community to live out their call to service.

When I arrived, the Nave was full.  There was space in a multipurpose room outfitted to allow us to participate fully in the service, though in a place far from the central worship space.  The feellings swirled.  There were some feelings at first, ones of which I am not proud, feelings that I was now relegated to a place far on the periphery of what had shared with my family a central place in my life.  I am grateful that my feelings moved away from feeling a loss of worth and value, to recognizing what the evening was about.  A community of people had taked a powerful hit and come out stronger that ever.  I got to touch their lives for a moment three years ago.  The night was about them and what had been and would be accomplished through them by the One we both serve.

Later in the evening there were some words of thanks that touched me deeply as Fr. Don acknowledged by name those people and faith communities who had supported them after the fire.

The contrast between the world in which I live now and the world in which I lived sixteen months ago is stark.  It was moving to be back in a liturgical setting with a large number of worshipers gathered, listening to and singing with a pipe organ, instrumentalists and choir producing powerful sounds, singing loudly in the midst of the congregation.  The moment was a poignant one for me as the forty years of ministry with its hopes and intentions and dreams broke into my awareness.  Current circumstances in my life and the needs of the congregation from which I retired have converged to provide a clear separation from my former life in the ministry.

What settled in my mind and heart last night is that my goal has been to impact those I served in a positive way as our lives intersected for a time. Whether or not it is remembered is quite secondary.  My hope is that my ministry had a positive effect on most of those I served in the three parishes and the high school these last four decades.

Now my goal is to make a difference for good in the life of someone I love deeply, even though I don’t always show that love as clearly as I should.  So that I could attend St. David’s new building dedication last night I arranged for a person from Home Instead an agency that provides people trained to do Companion Care.  It will cost between $60 and $70 for that care for Mary Ann, but I felt I needed to be there for my own sake and to provide a formal presence for my former parish. Needless to say, it is not feasible to use agency care very often.  I am grateful to have an income at all in this economy, but a fixed income does demand care in how and when that income is used.

Mary Ann has been up for most of the day today.  Last night did not start out too well, but after a while, she settled and slept soundly.  She has had a reasonably good day.  She ate with only occasional help needed.  She napped in the morning for a couple of hours, but has been awake and sitting up most of the day.  There were two Volunteers here at different times.

She went to bed around 7pm (less than an hour from this writing), and she is awake now watching her beloved NCIS repeat episodes.  It would be a wonderful experience to have a sleep-filled night tonight.  Time will reveal whether or not that comes to be.

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 11, 2009

Wake up! Go to Sleep! Please!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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It was a night from Hell.  We have plenty of them.  I went to be early in hopes that my presence would help her sleep.  Not so.  She wanted to go home more than once.  Often she would get up and when I asked, admit that she didn’t know why she had gotten up.  Once she woke up and said she had swallowed a snake.  I have no idea from where that thought came.

It went on through the night.  Once there were only seven minutes between times of getting up with some need.  The next one was twelve minutes.  Then came a couple about twenty minutes apart.  I am just tired enough that I went back to sleep during each of those short times, only to be wakened again.  I am not sure what words to say to communicate the level of frustration with that behavior.

One of the times she got up, she agreed to go to the table and eat some applesauce.  We started toward the dining room, and soon it was apparent that she just couldn’t walk well enough to make it there.  I asked her not to move, while I ran a few feet to get the transfer chair.  Of course she fell.  My level of frustration was enough that while I was complaining about her not staying still, instead of patiently working out how to get her off the floor in a way that was safe for me and her, I just picked her up off the floor and seated her in the chair.  Yes, she is only a little over 120 pounds.  No, a small 66 year old man with a family history of back issues should not try to pick up someone from the floor, someone who is not able to help in the process, essentially dead weight.

While it hurts, at the moment (six or seven hours later), it is not excruciating.  I am hoping only minor damage was done and that Advil, ice and a call to Chiropractor Tim will eventually take care of it.

Last night, all I wanted was for her to go to sleep!  She got up early again.  I just insisted that she stay in bed so that I could get another hour of sleep.  Gratefully, she did stay in bed for a while.

When she got up, things were pretty difficult.  I, of course, was not in a very pleasant frame of mind having been up and down every few minutes during most of the night.  She was able to get some of her food eaten by herself.  After breakfast she sat by the television in her PJ’s.  She was in popping up mode.  While at the moment, she is not fainting, her weakness and balance are making her vulnerable to falls.  I got a phone call.  Just as I got into the conversation, she hopped up and headed across the room.  I was frustrated by the timing of it, but after determining it was a bathroom need that precipitated it, I got off the phone and got her into the bathroom and seated.

I have not mentioned this much in the last three days, but there has been intestinal activity verging on diarrhea.  Sunday morning when I was gone, she had some major activity.  That activity required a later cleanup that involved removing the toilet seat, taking it to the large basin I had installed in the basement storage area for things like this, soaking the toilet seat in water with lots of Clorox Bleach, scrubbing the hinges with a toothbrush, rinsing, drying, disinfecting the stool itself and replacing the toilet seat.  This is all taught in Caregiver school.

The good news is that the activity does not come often.  It is just takes some extra effort to keep her and whatever else clean.  We have dealt with much worse in this area.  This morning’s trip to the bathroom was not an easy one.

When she returned to the living room, the popping up continued.  She was almost always getting up to look around at the floor.  I don’t know exactly what she was seeing, but it was some sort of mess that needed cleaning up.  Just going into the kitchen to get a bowl of cereal had to be done in short segments of time, often less than a minute in length so that I could check on her and get her seated again.

I had not yet gotten my morning shower.  I could not trust her to stay seated for the ten to fifteen minutes it takes for me to get ready.  She often agrees that she will stay seated, but pretty much does not do so.  I finally realized that the only way I was going to get ready myself, would be for her to be napping.

There is such an conflict of wants and needs that converge on this simple process.  I want her to stay awake during the day and sleep at night.  I want her to be sleeping even during the day so that I am not dealing with the popping up, the constant needs, the hallucinations, not knowing what will come next.  I should keep her up in the daytime, but when she moves into her need-for-sleep mode, she ends up hanging her head and sleeping in her chair, if not in her bed. There is a sense of relief when she is sleeping during the daytime hours, but a dread for the horribly frustrating nights that come when she can’t sleep then.

I suppose I could sleep during the day while she is sleeping.  I don’t want to shift days and nights for both of us.  I want to be tired enough at bed time that I can go to bed and sleep, if she will allow it.  When she is asleep, I have the freedom to do things that nurture my own well-being both for my own sake and so that I don’t lose the capacity to care for her.  These posts have been long and detailed lately because she is sleeping enough during the day that I am free to write.  These posts have been long and detailed these last days since we are almost entirely homebound now and the task is frustrating enough that I need the outlet of writing these posts as therapy.

Then there is the question, how is Mary Ann dealing with this new place in our experience.  She is stuck with the frustration of not having the mobility and mental acuity she has had, and she is stuck with Grumpy Caregiver who gets frustrated with things she cannot control.  She vacillates between days when she is exhausted and just wants to sleep, and nights when she can’t sleep, wants to be up while the person on whom she depends is scolding her and insisting she stay in bed.  She needs food but often not what is in front of her.  She hates the feeling of needing to be fed but often needs to be fed.  She wants to do things for herself but is constantly being asked to sit down, being reminded that she can’t do them.

I wish I were better at this caregiving task.  On the positive side, I think that most of the time I act in ways that are caring and helpful and affirming of who she is.  I try to treat her with respect, recognizing that my words are not always respectful when I am frustrated with some difficult behavior that seems still to be under her control (probably most often a result of the disease more than her willfulness).  I work hard at keeping her neat, hair washed, dressed appropriately, the house in order, beds made, kitchen in order.  I work very hard at determining what she needs or wants and if it is possible, trying to provide whatever it is.  With that said, in fairness, my assessment is based on who I want to be, not necessarily who I am in her eyes.  In the area of this sort of self-awareness, my propensity to feel guilty when I have been unkind provides some internal metrics.  My self-centeredness drives me to do things that allow me to feel good about myself.  My batting average in that task is probably just that, painfully average.

Back to our day: When med time came after she had been sleeping for a couple of hours, I decided not to make yesterday’s mistake.  After I took her to the bathroom, she stayed up for us to head to Glory Day’s Pizza to bring a couple of slices home for her (lunch and supper).  Her mobility was very poor, and she still would not open her eyes, so the trip out to the car and back afterward was pretty difficult.

She insisted on eating the slice of pizza without help.  She only managed to eat the topping (cheese only) from a little more than half of the one piece.  Then she was done.  After refusing once, she finally agreed to a dish of ice cream.  She is about five pounds lighter on our scale than she was the last time she weighed herself before the trip and the hospital.  She has been eating so little it is no wonder.  When I took her to the bathroom after the pizza, as I was getting her clothes down so that she could sit on the stool, she stopped me, asking what I was doing.  She thought we were still in the dining room.

At about 4:45pm, she wanted to get her bed clothes on and get into bed. She got up again when a paid worker from Home Instead to stay for a few hours while I honored a commitment that was important to me.   She was still up when I returned and went to bed at about 9:30pm.  Let’s hope for some sleep tonight.

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 9, 2009

Hospital Stay and Days Following: Reflection

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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Mary Ann slept reasonably well last night — back to a more normal pattern of getting up to use the commode.  She was up before 6am for some food, but was willing to lie back down for a while.  She got up at 7am for food and pills.  She did pretty well, handling most of the consumption on her own — just a little help with some of the yogurt.  She continues to be able to hold her head up, at least for a while.  She is communicating a little better.

She was up for about two hours and is now back in bed.  Yesterday late afternoon she was up for about two and a half hours.  I am assuming that as time goes by she will be able to stay up during most of a full day, but there are no guarantees that will be so. I am certainly feeling better about how she is functioning now than I was two days ago.  There is a way to go yet to regain the pre-hospital norm, if that is to be the case.

One of Mary Ann’s friends from Junior High days is celebrating her 50th wedding anniversary today.  This was the 50th anniversary year of Mary Ann’s graduation from East Aurora High School  East High is, of course, an arch rival to West Aurora High from which I graduated a couple of years later.  We have been married almost 44 years — and they said it couldn’t work, a girl from East High and a boy from West High.

Cherri is thrilled with the celebration.  In these times, it is a remarkable thing to have longevity in a marriage. They have children and grandchildren that bring them great joy.  Cherri shared words of love and concern for Mary Ann, recognizing the contrast between her mobility and the options that mobility provides and Mary Ann’s plight.  She and Joy and Terry, along with Mary Ann made up a foursome to be reckoned with.  When they are together it is as if not a day has passed since they hung out together so many years ago.  They all care very much for Mary Ann and hate seeing that feisty lady they have known, trapped in a body that won’t cooperate and diminishing in mental acuity.  She has had such a wonderfully wicked sense of humor that could get you when you least expected it.

Along with the sadness at what has been lost, is something that is not so obvious, something that is important.  It is something that has not been lost, but found.  It is something that is there, available to all of us if only we will pay attention.  It is something that our situation makes more visible.  It sounds very trite to say it this way, but it is not at all trite.

Mary Ann and I live at the very core of life all day long every day.  There is deep and profound meaning in the simplest of tasks.  There is not a trivial moment in our days.  While there are great limitations on the options available to us for activities, there is no limit to the value of our time.  Our lives are filled with meaning.  Whether there is sleeping going on or time on the commode or eating or going in the car or sitting on the deck or watching the computer screen saver move through pictures of our Grandchildren, there is value attached to each moment.

Anyone who has lived long enough to have gone through painful times is likely to be aware of the meaning attached to the time we have.  Every moment we are in, contains all the time there is.  It is a moment of life, which my spirituality understands to be a moment intentionally given by the Someone who gives us life.

While the heart of Christianity often gets clouded by caricatures shaped by the loudest voices who seek to define what Christianity is, the truth is, it is a relationship created and sustained by a kind of love that is ultimately beyond human comprehension.  It is not a set of behaviors or a political position but a connection with One who produces good behavior to the degree we don’t ignore that connection.  The core is the relationship, not the behavior.

Back to Mary Ann’s day.  Edie spent the morning with her.  Apparently, Mary Ann got up and spent the morning engaging in conversation as well as watching and talking about the preparation of the meal.  We enjoyed a hearty meal, watched football for a while (of course, the Chiefs lost again), and then Mary Ann decided to lie down again.

Tonight is the time we usually attend a worship service.  At the moment, I am not very confident that will happen.  She has not yet dressed today.  I would be surprised if she would tolerate preparations to be out with people.  We will see.  It is still a couple of hours to Service time.  She is sleeping soundly at the moment.

As expected, she was not ready to try heading out in the car and attending the Service.  She was up for a while, ate a little, watched a little television and headed back to bed.

Tomorrow begins with the bath aide and includes an afternoon trip to the dentist.  It will be interesting to see if she has the stamina to do both.

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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