Sources of Strength

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December 25, 2009

Christmas Blizzard

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , |
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When I stepped out on the deck a short time ago, the snow squeaked when I walked.  I have seldom heard that squeak since I headed off to college in the fall of 1961.  Actually, I did have opportunity to hear that squeaking for my undergraduate years, since they were spent going to school in Milwaukee, Wisconsin and Northern Indiana.

The wind is howling through the trees.  The snow is blowing.  There is potential for over a foot of snow by morning and gusts of wind up to 50 miles an hour.  I felt an odd sort of nostalgia when I stood out there listening to the wind and feeling the cold and snow on my face.  I have no wish to live in a cold climate again.  When I step outside, I come back in right a way to enjoy the warmth.  Nonetheless, there are flashbacks to a time when I played endlessly in the snow, built snow forts, went sledding down every hill I could find in flat Northern, Illinois.

The Kentucky Crew, Daughter Lisa, Denis, and little Abigail and Ashlyn, headed off this morning to avoid the blizzard.  Otherwise they would have missed Denis’s family gathering and maybe a workday or two depending on travel conditions after the blizzard.  There is always a bit of separation sadness when the kids leave.  My Mother, even when we were older adults and she was in her 80’s, said that when we left after a visit, she would get in the car and go somewhere, maybe invite someone to meet her for lunch, to mitigate the sadness in the pit of her stomach.

I am almost glad for the blizzard.  It is distracting enough to take our mind off the time of separation sadness.  I am not glad for the timing of the blizzard.  We have missed out on every Celebration of Christmas in a corporate worship setting this year.  I am hoping to find something on the television or computer to help provide at least the illusion of worshiping in a corporate setting.

The changes in plans caused by the weather, something outside of our control, brings to mind a thread of discussion in the online group made up of Caregiving Spouses of those with some form of Lewy Body Dementia.  One of the members included the following quotation.

“The carrying out of a vocation differed from the actions dictated by reason or inclination. … The most beautiful life possible has always seemed to me to be one where everything is determined, either by the pressure of circumstances or by impulses such as I have just mentioned, and where there is never any room for choice.” Simone Weil.

The quotation was made in the context of reflecting on the acceptance of the Caregiving Role, immersion in it, and thoughtful wonderings about the prospect of having choice again should we outlive our Loved Ones.

The responses that followed included some blunt rejections of accepting the loss of choice and giving up other dimensions of the Caregiver’s life.  That thread has been very thought provoking.  I have written lots of words in earlier posts on this.  It was good for me to think again about what I am doing, the way I have chosen to do it, why I am doing it, and its impact on my quality of life.  I recognize that what I am doing as I reflect is very self-centered, but my reason for doing this blog is to help other Caregivers make sense of what they are doing.

Mary Ann’s needs are basic and constant.  It is not her choice that she have those needs.  They are just a fact of her life, and on that account, as her husband, my life.  Those needs do not leave much in the way of choice.  If I don’t respond to a need, there are consequences for her and consequences for me.

As in the quotation, there is not a lot of stress resulting from being conflicted about what to do from one moment to the next.  I simply respond as effectively as possible to the needs that arise.  There are few choices to be made.  What is at issue, at least for some of the respondents online is the struggle with giving up choice.

As I think about my circumstances, what has given me comfort and peace in living as a Caregiver, with few choices, is the reality that I have chosen this role.  There were other alternatives with varying degrees of difficulty in making them a reality.  I chose this role.  As I have said many times before, I chose it for my own benefit as well as Mary Ann’s benefit.  It does need to benefit her to accomplish the very thing that gives me satisfaction and creates meaning in my life, but when all is said and done, I am doing it for me.  I love her, I promised to live that love whatever came, I want to do things that help me feel good about myself.

I am also convinced that the quality of life does not depend so much on externals.  If we were traveling the globe together, we would be happy sometimes, sad other times, angry sometimes and at peace other times.  I am not so foolish as to suggest that people who are in horrible circumstances should buck up and be happy.  Even with our challenges, there are way more frightening realities out there.  I don’t know how I would feel or what I would say if things were worse than they are.  All I can say is that at the moment, I am convinced that I have as good a quality of life as I would have doing much of anything else, including playing all the time (which sounds boring to me).

There is one dimension to my situation that raises a question for me.  When I get up in the morning and look at our clear schedule, instead of longing for things to fill the day, I celebrate that I am not overwhelmed with too much to do.  For 40 years in the ministry, my average work week ranged from 60 to 70 hours.  I was on call (sickness, marriage and personal counseling, deaths) 24/7 to anywhere from a thousand to three or four thousand people when adding together members and their immediate circle of relatives and friends.  In the last years, while I did not take a directive approach, I was ultimately impacted and responsible for and responsible to a fairly large paid staff and a huge staff of volunteers.  Again, I did not relate directly to all of them, but by virtue of the role lived with the consequences of their choices.  The vast majority of time I had the joy of benefiting from their good choices.  That was not always the case.

In the last few years before I retired, Mary Ann’s needs consituted a full time job all the hours there was not a Volunteer with her.  There were regularly sleepless nights and always nights of interrupted sleep.  The job of Senior Pastor in a comparatively large congregation was exceedingly demanding in terms of time and personal stamina.

What I am wondering is if I might still be resting up from what had become an overwhelming load.  Even small tasks now can bring an almost PTSD sort of flashback to feeling overwhelmed.  Maybe I am settling in to having one focus of need since it is such a relief not to have loads of needs coming from numbers of directions.

One thing about the circumstances we are in, and the loss of choice in what I do minute by minute and hour by hour, is that I do not feel like a victim.  The circumstances are just that, objective realities that we must deal with.  Everyone has circumstances.  They just differ from one another.  These are ours.

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 22, 2009

Family Christmas Celebration

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , |
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On Sunday it was a real joy to have all nine of us in this small immediate family together to eat and talk and open presents.  Each of us will incorporate corporate worship in the our celebration later in the week.  For that day our time was spent celebrating what the Lord has done in our little family. 

I am sure Mary Ann enjoyed the day, even though she headed in for a nap right when our Children and Grandchildren arrived.  After a couple of hours of preparation for the meal, Mary Ann got up to join us for a late lunch.

We now have a spotlessly clean oven!  We were able to reheat the Prime Rib that was “smoked” two days before in the oven that had Honey Crunch Pecan Pie deposits on the bottom to flavor the smoke.  This time there was no smoke!!!  That is especially good since our Son and Daughter-in-Law brought the ingredients for the Triple Fudge Cake they often make for family gatherings.  Yes, they brought ice cream to eat with it.

The directions for the self-cleaning oven made it absolutely clear that all the pools and puddles and burnt patties of stuff on the bottom of the oven needed to be removed before using the self-cleaning function.  I had, of course, figured that out before reading the directions, after having smoked both a pie and a Prime Rib.

Saturday’s preparations for the family gathering and meal on Sunday went reasonably well.  Putting together the grape salad (extremely good), and the cheesy potatoes was not difficult.  The combination of Mary Ann’s napping and a long lunch out in the mid-afternoon pushed the preparations very late in the day.  There were some other household chores.  As a result the present wrapping ended up going until 1:30am, long after Mary Ann had gone to bed.  It is at times like this that I really respect single parents who take care of everything themselves, including all the needs of their children.  It is surprising to discover how fast small and seemingly insignificant tasks can add up to proportions almost impossible for one person to manage.

Again, this is a sexist observation, but nonetheless true for me.  As a male Caregiver, tasks that my Mom did when I was growing up, tasks that Mary Ann did, enjoyed doing and did well, I have found to be very difficult.  They are not necessarily difficult tasks by themselves.  It is the comfort level with doing them that is the problem.  Shopping for Christmas presents, wrapping them, getting and sending Christmas cards, putting out Christmas decorations, as well as food preparation don’t come naturally to me.  They are just uncomfortable enough for me that I come up with all sorts of reasons to postpone dealing with them.  The Christmas cards are still in the unopened boxes sitting in a bag on the floor.  I should be working on that instead of writing this post!

Mary Ann enjoyed the day Sunday, but got very tired late in the afternoon.  There was a much anticipated Choral Eucharist at church last evening at the time we usually worship on Sundays.  It was clear that Mary Ann would not be able to manage the Service.  She was in bed for the night not too long after 6pm, the same time the Service started.

This time there was no option of my leaving Mary Ann at home with the family.  Our Daughter had surgery two weeks ago and could not help Mary Ann physically, Our Son could have helped with her, but he had to take our Daughter-in-Law home since she is having Gall Bladder surgery on Tuesday.  She was also very tired.  As a result, there was no one at the house other than me who could take care of Mary Ann’s personal needs.  I missed the opportunity to enjoy a wonderful worship, our choir and soloists, instrumentalists, bell choir, our Organist-Choirmaster, all of whom are outstanding.   The quality has always been far beyond what would be expected for Volunteers.  It always sounds very professional as well and meaningful Spiritually.  The Christmas celebration has a completely different feel as a retired pastor.  While we will attend church on Christmas Eve, the services with full choir and soloists come too late in the evening for Mary Ann.

Gratefully, what the celebration is about transcends any specific event in that celebration.

The Christmas celebration meal was okay, but the Prime Rib did not go over as well as I had hoped.  The rare look of a good piece of Prime Rib is not appetizing to everyone, especially little ones.  Thank goodness for Kraft Macaroni and Cheese.  Actually, our Son, Micah, and Granddaughter, Chloe, would probably not be alive today if it were not for Kraft Macaroni and Cheese.  Our Daughter, Lisa, found the microwave to be what was needed to get the red out.  She admits to having an aversion to meat that provides any visual evidence that it was ever part of a living animal. 

Today has been a sort of recoup day, with minimal activity.  Mary Ann again needed to crash for a about two and a half hours mid-day today, even though she slept well last night. 

Mary Ann continues to seem less functional and engaged, and more tired than in the recent past.  I am not sure about that since I am with her all the time.  One particularly bright spot was an email from Marlene, one of the Kansas City Crew, who took a picture of us on Friday.  Mary Ann was smiling.  It seems as if it has been an eternity since Mary Ann was caught smiling in a picture.  If I can figure out how to do it, that picture may make in on my FaceBook page. 

It is a very good thing to have our two little Granddaughters here at the house for a few days.  There have been plenty of Grandma and Grandpa hugs to brighten our days.  Our Daughter, Lisa, is deeply caring and her love for her Mom is apparent in everything she syas and does.  She is also a tremendous support to me.  Our Son-in-Law, Denis (yes, spelled with one “n”), is a man of great character, who is willing to do anything he can to help us. 

Whatever our challenges, our Children, their spouses and our Grandchildren provide us with joy beyond measure.

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 11, 2009

A Good Night Out

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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If you have not heard “O Holy Night” sung by Kristen Watson, you have not heard “O Holy Night!”  Music has the power to break through defenses and touch us at the core of our being.  When trite or contrived or done badly, it has no power but to annoy.  When done well, with honesty and integrity, there is no defense that can repel its power to engage one’s spirit.

When Kristen sang “Gesu Bambino” there were no defenses left.  The last note with its quiet and gentle power, set the stage for “O Holy Night.”  Since retiring from the Pastoral Ministry, a combination of Caregiving demands and traveling to visit family have diminished dramatically the opportunities to attend the most powerful worship opportunities at Christmas.  Last night’s concert was an experience powerful enough to fill the spiritual longing that comes with each Christmas season.

What added to the deeply felt comfort was that I was able to sit with Mary Ann in the little raised area for those in wheelchairs.  My ticket was for a seat behind and a dozen feet away from Mary Ann. I couldn’t bring myself to sit down separated that far from Mary Ann.  It surprised me a little to feel so strongly the need to be next to her.  In the past, I have generally retreated into my own world at concerts, listening intently, immersed in the music.  Someone suggested the possibility, and I checked to be sure it was acceptable for me to sit in that area.  Companion Care Aide, Debbie, sat on the other side of Mary Ann.  As it turned out, there was no need for a trip to the bathroom during the concert.   All of us got to experience fully the entire program of music from silly to sacred.

There was a dimension to the evening that I did not fully anticipate.  Having retired from the role of Senior Pastor at the congregation I served for over a dozen years, I have not seen and talked with more than a handful of the members of that congregation since I retired a year and a half ago.  It was like a reunion.  It didn’t take long to realize how much I miss the people who had become a part of my life during those years.

There is an intimacy that develops between pastor and people that is hard to describe. The ministry is not as much a job as it is a relationship.  Certainly there are lots of other professions that include at least as strong a relational element.  I can only speak to the ministry, more specifically, my experience of it.  Last evening I redicovered how connected I came to feel to all those folks, and how much I have missed getting to interact, to talk and listen and kid around with people I care about.

The combination of celebrating a reunion of sorts as well as being lifted spiritually by the music made for a very good night out.  Mary Ann was greeted and engaged by many, and she too enjoyed the music.

After two days holed up in the warm house, protected against the elements (snow and bitter cold), we both needed the time out, distracted by something other than the television.

The change in the medicine mentioned in last night’s post seemed to have the hoped for consequences.  There was a return to a more normal level of intestinal activity almost immediately on discontinuing the generic Mestinon.  Today has been a fairly normal day.  Mary Ann got up early, then took a two and a half hour nap.  We got out to lunch at BoBo’s, headed to the Honda dealership for a quick minor repair of the CD player in the van, and visited the home of a friend, one of Mary Ann’s closest friends from almost the very first day we arrived here nearly fourteen years ago.

Tonight Mary Ann had some pain that needed a nitroglycerin pill.  Those are always scary moments, although not at all uncommon for folks with heart blockages such as Mary Ann’s.  The pain subsided after taking the pill.  She woke up a few moments ago and needed a trip to the commode.  The Thursday people are back.  She wanted to know what the next family was going to do.  She insisted on closing the bedroom door while she used the commode so that they could not see her.  I hope she is able to get back to sleep, and that she has a restful 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.

 

December 6, 2009

Medicine Adjustments and Online Support

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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It is just too soon to tell.  Mary Ann is now taking two medicines to help control the fainting due to low blood pressure when standing (Orthostatic Hypotension).  One is the standard med prescribed to control the bouts with fainting, Midodrine.  The second is a medicine prescribed off-label for helping control the BP.

I just read a post on the online of Spouse Caregivers of those with Lewy Body Dementia.  That post had specifics about their larger dose of the new med.  I have been thinking lately just how helpful it has been to be a part of that online group.

The group is a place where those who are in the throes of very difficult caregiving can vent without judgment.  In fact the opposite of judgment comes.  There are words of acceptance, affirmation of the validity of the feelings of those venting. Everyone in the group understands the crazy ups and downs that come with this disease.

Reading the many hundreds of posts over the last year or two has helped me handle things that might have frustrated me more had I not known what to expect.  I knew not only from past experience but from the group that the aftermath of the hospital stay might be a problem.

We can ask one another how her/his Loved One reacted to a particular medicine or dosage of that med.  Even alternative medications can be discovered in the posts.  There are some who see a particular doctor at the Mayo Clinic who specializes in Lewy Body Dementia.

We can talk with one another about waste management issues without having any concern for speaking in an indelicate way.  There are things that can be shared there that would not be appropriate in a blog like this.  We can talk in ways that might scare those who were not going through this particular challenge.

One thing I have gained by reading those online posts is perspective on Mary Ann’s and my situation.  The struggles of some in the group are beyond imagination.   We are among those who have been dealing with Parkinson’s the longest, but others have been dealing with the dementia much longer than we have.  Not all the spouses have Parkinson’s, but all have some form of Lewy Body Dementia or a related diagnosis.  For some the dementia has reached the last stages, where we are in the mid-range of the usual progression of the disease.  With that said, the truth is, the disesase vacillates so dramatically, that most of us have seen earlier and later stages of the disease in our Loved One’s at various times – with no warning that a change for the better or for the worse was coming.

With the perspective of the reading those posts, I celebrate how much we are still able to do, the quality of life still available to us.

Mary Ann did reasonably well today.  We slept a little later this morning, a good thing for both of us.  The morning routine is pretty time consuming, leaving too short a time to allow us to participate in a morning filled with activity at church, including a Pancake Breakfast.  We did benefit from some leftovers brought over early in the afternoon.  When she was up in the morning before her nap, she was not at her best.  There were many times that she had her eyes tightly shut as we tried to walk to and from the bathroom.

Mary Ann actually ended up in bed late in the morning for a couple of hours of napping.  After eating some of the leftovers, we went out in the car for a while, ending up with ice cream.  Our first choice for ice cream this afternoon has gone out of business, Maggie Moo’s.  The format is the same as Coldstone Creamery, only with much better quality ice cream.  We ended up at Sonic.

She was pretty alert this afternoon, and headed to bed sometime around 7pm or 7:30pm.  She has been a little restless, but as always, I am hoping for a restful night for both of us.

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 5, 2009

Outing Today and Caregiver’s Dilemma

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

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , |
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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 25, 2009

Caregiving Husbands

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues, Sources of Strength | Tags: , , , , , , , , , , , , , , |
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“Today I read an article in Web MD that male caregivers were more likely to leave their wives than female cg to leave their husbands, so kudos to all you guys that have stayed with your wives!!!”

That is a quote from one of those in the Caregiving Spouses group.  It started a stream of posts wondering why that might be so.  In that stream of conversation came the statistic that 40% of Caregivers in general are male.  I am reporting what was written about male Caregivers.  I have no formal verification that what was reported is accurate.

Assuming that more husband Caregivers leave their wives than the other way around, there are some things that I and others mentioned might be part of the reason that is so.  It is hard to talk about this without unfairly stereotyping men and women.  As is the case with most generalizations, it is not true that anyone is bound to be a certain way.  Each of us is unique and needs to be judged on who we are and what we do, not some external sterotype.

With that said, my generation and my parents’ generation grew up with certain assumptions about the roles of men and women that may play into how each does in the caregiving role.  I can remember my Dad standing in the kitchen, the room with the coffee maker, calling out to my Mom, asking for her to get him a cup of coffee.

Dad was not harsh and demanding, it was just the way it was.  Mom wasn’t meek and mild, she stood up for herself, but it was just the way things were done in our household.  By the way, even though I grew up that way, and Mary Ann did as well, I would never have gotten away with such a silly request.

The culture of roles in my experience was that men were often not raised to be caregivers.  Mom did the cooking and cleaning and child-rearing, and Dad went to work, took care of the home repairs and outside maintenance of the house and yard.  He also took care of the finances.  Mom and Dad talked about decisions.  It was not that Dad ruled.  They just each had roles like the ones they grew up with.  Dad was born in 1901 and Mom in 1907.

Dad bowled, golfed, watched boxing and wrestling on television (after we finally got one when I was eleven years old).  Mom did lots of sewing, was active at church, doing what then was perceived to be women’s tasks, most often serving others in some way or teaching children, singing in the choir.

For those men who grew up in that sort of setting, taking care of someone else was moving into pretty foreign territory.  I have to admit, that the caregiving model of behavior has been quite a stretch for me.  I grew up at least as self-centered as most males of my generation (again a risky generalization).  I am flying by the seat of my pants here.

I joke about not doing a good job of providing meals.  While I am a reasonably intelligent person and certainly am capable of cooking a meal, the pattern of what to do and when to do it when cooking is not in that portion of the brain that I call automatic pilot.  It is the place in which the “never forget how to ride a bike” sort of information is kept.  Every time I think about preparing a meal, I have to start from scratch, figuring out every element of the task as if I have never done it before.

Yes, I put colors and whites together, cram the washer full and just switch the dial to cold water only so that everything won’t come out the same color.  Sewing buttons on is a ridiculously challenging task.

I suspect that for some caregiving husbands who bail out on their wives, the difficulty of the tasks, their inexperience with doing them, their selfishness and stereotypical view of who should serve and who should be served, combine to overwhelm them, and they just run away.

It seems to me that whether male or female, there is one simple reality.  We made a promise out of love for one another.  We gave our word.  To run away seems silly.  To where would we run?  Our broken promise would go with us wherever we went.  What exactly would there be to be gained that would be worth having?

I have had the privilege in forty years of ministry to be allowed to see into the most intimate corners of the lives of many hundreds of people.  For the most part I have seen men and women alike who love and care for one another, honor their commitments and keep their word to one another.  It is the way to live with meaning and purpose the lives we have been given.

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

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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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 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.

 

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