The Caregiver Calling

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.

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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!

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Mary Ann liked the chili.  At first she could not negotiate the spoon well enough to get anything into her mouth.  For whatever reason, her compromised spatial awareness (from the stroke or the Lewy Body Dementia or both) makes it difficult for her to use the spoon as intended.  Most often it gets turned over so that all she gets is what sticks to the back of the spoon.  It works for ice cream and sticky foods, but not for liquids. Sometimes she can get the spoon turned upright, but she can’t keep it level enough for a liquid to stay in it long enough to make it into her mouth.

After I crumbled lots of saltine crackers into her chili, soaking up the liquid, she was able to get a portion of it eaten.  She tried to cut off a piece of the freshly baked, very tasty, cinnamon roll so that she could eat that.  I saw her struggling with it and used the spoon to divide it into a number of pieces that she could pick them with her fingers.

We were sitting at a round table eating with former parishioners who pretty much took for granted Mary Ann’s struggles with eating.  They knew not to pay too much attention or offer to help, thereby making Mary Ann more uncomfortable.  The family at that table with us had lost two members, the Daughter and Wife of one, and the Mother and Sister of the other, both at a comparatively young age to a form of Alzheimer’s Dementia.

I quietly offered to assist Mary Ann by feeding her, but as expected, she refused the help.  She was clearly getting very frustrated, more so than she has in the past.  Since this was a church dinner provided by the Junior Youth and their Parents, there was not a menu with various items to choose from.  There was no option of picking something that would be easy for her to eat.

It is clear that we will need to check the menu for the next dinners at church to be sure there is something there that Mary Ann will be able to eat without much help.  Tomorrow evening is the Parkinson’s Support Group dinner.  While that group has other members who are debilitated, at the meetings, Mary Ann is usually by far the most limited in physical ability.  I hope that she is able to handle the meal.

What is at stake here is the potential loss of one of our main activities outside of the house.  Mary Ann has done pretty well at not being deterred from going out by the difficulty she has eating.  Her frustration this evening was intense enough that it could negatively reinforce the experience of eating out to the extent that she will just refuse to go.  She has always wanted to go out to eat.  We would eat every meal out if I would acquiesce to her wishes on the matter. As eating in public becomes more of a problem for her, she is beginning to let go of the need to go out.  While I am glad for the money we save by eating at home, we need not to cloister ourselves in the house.

Mary Ann napped for a couple of hours this afternoon and went to bed fairly early also.  She commented on the fact that is was a long day, the Bath Aide at 9am this morning, the Service and dinner this evening. She slept fairly well last night, and at the moment, she seems to be settled in.  We will see what tomorrow brings.

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Yes, the parking was no picnic.  We ended up on the fifth level of the parking garage.  It was good that it was a warm and sunny day since that is the top level, uncovered.  The elevator took us to street level, where there were curbs between us and our destination.  Curbs make it virtually impossible for wheel chair travel.  There was access to the street available to us by heading away from our destination for a relatively short distance.  Then we had to head out into the street for about a half block to find a spot where the curb had been lowered for wheelchair access.  The ramp to the second floor entrance to the Pozez Education building was a long switchback with a pretty steep incline.

On the poaitive side, that climb provided some much needed exercise.  It was the annual Healthwise 55 Holiday Brunch.  This year it was extended to a fourth sitting beginning at 11:30am.   We always chuckle about the menu for the Healthwise 55 Brunch. It is an all-you-can-eat buffet.  There are scrambled eggs, sausage links, bacon, biscuits and gravy, doughnuts, muffins and a bowl of fruit.  I concluded that taking a cup of fruit freed me to have two helpings of everything else without guilt.

Mary Ann did pretty well at eating the eggs and bacon and fruit.  Since she is not ready to let me feed her in public, it is good that she was able to manage eating on her own.  She ate a couple of helpings of the eggs and bacon. It did surprise me that when we got home and settled, she popped up right away and headed toward the kitchen.  She wanted one of the two pieces of pecan pie she was convinced we had.  We had long since finished the pumkin pie from Thanksgiving.  Other than a couple of pieces of pecan pie that Jeanne had brought when we lunched together at our house ten or twelve days ago, there has been no pecan pie in the house.

This will be a food-filled week.  Yesterday, buddy Jimmy took me out for the usual monthly lunch.  I had a single order gourmet Italian sweet sausage and red pepper pizza that was the equivalent of a full-sized small pizza.  Then there were the bread sticks and the salad.  I brought home enough of the pizza for Mary Ann and I both to have some for supper.

Tomorrow the Liturgical Season of Advent begins with evening worship and a supper.  More social activity.  Then on Thursday comes the Parkinson’s Disease Support Group catered Holiday meal.  More social activity.  While eating in public has the potential of being awkward, embarrassing, uncomfortable, staying home will not make those problems go away.  By going out, we both become less sensitive to those externals.

Mary Ann did nap for a couple of hours this afternoon.  As always, I hope for both her sake and mine, that it is a restful night.

Addendum: Our Daughter Lisa had surgery on Monday.  The surgery went well.  She went home today and an is in recuperation mode.

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I think it was around 3am that Mary Ann finally settled.  Then, we were up pretty early again in anticipation of the Bath Aide.  Mary Ann has done no napping today, and she did not go to bed early.  Some days she can sleep well at night, then have a couple of two or three hour naps during the day.  There seems to be no rhyme or reason to when there is lots of sleeping and when there is very little.

When there has been little sleep, I appreciate that I am retired and have no major public responsibilities that would be impacted by my sleep deprivation.  I guess driving is a public responsibility.  If you see a dark colored Honda van coming down the street, give it wide berth.  The driver may be dozing.

Today has turn into a domestic duty day.  It was not planned that way, a couple of things just converged on the day. Both the medication that thin her blood (aspirin and Plavix) and the mucous production increase on account of the Autonomic Nervous System being impacted by the Parkinson’ s and Parkinson’s Dementia, combine to create the need often to change the bedding.  Today was not the usual day to change bedding, but I noticed that even the mattress pad that is protected by two chux had some stains on it.

I got out a new mattress pad and put the dirty one in the downstairs utility sink along with stained bedding, and a two or three ladles of Oxyclean.  After soaking a few hours,  and then running it through the washing machine, it is all in the dryer at the moment.

Then the weather for today and tomorrow allowed working on a much dreaded task. The Ceramic tile floor in the bathroom is a dangerous weapon in a household with someone who has both balance and fainting problems.   After a nasty fall and subequent trip to the Emergency Room, followed by a couple of hours with the Ear, Nose and Throat Specialist trying to get the bleeding stopped, I realized that the tile floor needed something to soften a fall.

I found something called Snaplock, twelve inch squares of mesh made of a strong and supple plastic mesh.  The squares snap together.  The colors were nice and the squares were easy to put together.  The squares are impregnated with something to reduce the mold.  Of course the squares must be taken up and cleaned a few times a year.  The weather is important, since the tiles get washed in the driveway, and dried in the sun.  I scrub them with an old broom after spraying them liberally with spray cleaners that kill mold as well as cleaning the tiles.  They then air dry.  They are on the driveway tonight.  I will leave them there and bring them in after the sun has done its work.

The hardest cleaning task actually is cleaning the ceramic tile that has been covered by the mesh squares.  Mold eventually grows under the tiles.  There is lots of spraying (Tilex and Clorox Cleaner), scrubbing with the broom, and rinsing that has to be done.  It is certainly worth the effort to have the protection on the ceramic floor.  Any Caregiver whose Loved One is subject to falling needs to be sure and cover ceramic tile with something safer.  Gratefully, the Snaplock tiles come in very nice colors, so the result after putting them down is not unappealing.

Blood Pressure update:  Now that I have reduced in half the Midodrine in preparation for starting the new medicine, Mestinon, I am trying to track her BP more closely.  Sitting down at the table earlier in the day, her BP was 107/65.  Tonight while lying down I tried taking it with the electonic meter.  It would not read her BP but gave an error message.  That usually means it is too high for the machine to measure.  When I took her BP by hand, it was 240/120.  There was no doubt about when the beat started and stopped while listening with the stethoscope since the beat was so strong.

That is another example of just how dramatically her BP jumps between high and  low.  Tomorrow morning I plan to add the generic Mestinon.  I hope it works.  I don’t know how long it takes to reach the therapeutic dosage. We will just wait and see what effect, if any, the new medicine has.

As always, we will see what tomorrow brings.

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