January 15, 2010

Trouble Processing Visual Images Continues

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“My supper is gone!”  Since she had not been eating for a while, I asked her if she was done.  Almost all the leftover Quiche from lunch was still there.  The fruit had not been touched.  She said her food was gone.  I turned the plate, pointed to the Quiche sitting there and asked if she saw it.  She said she did.

We had ended up at McFarland’s Restaurant for lunch because of the awkward fit of the retired pastor in the life of the parish from which he retired.  We attended the funeral of one of the people I respected most over the years.  Ann was 93.  Just imagine what she had seen in those 93 years.  In our tradition we do not canonize saints.  If we did, Ann would be one!  She and husband Maury, who died about ten years ago, had helped found the congregation in the late nineteen forties.  I remember a few visits with both of them at their home after I first arrived in the parish in 1996.  Ann was doing with Maury what I am now doing with Mary Ann.  She was doing it with much more grace and humble acceptance than I have demonstrated.  While wishing to spend time talking with the family and close friends, I was not comfortable inviting myself and Mary Ann to the meal provided for them.  With a little more of that gut grieving going on, we headed to McFarland’s for lunch.  I keep wondering how much of this sort of grieving the Pastor I followed suffered in silence without my ever knowing it.  Thinking about that helps me put into perspective what is just part of this step in the journey.  It also surfaces some guilt that I was not more sensitive to his place in life at that time.

The most exciting event that wound some joy and anticipation into that same gut was the gift of the most effective anti-depressant of which I am aware, Lori’s home made chocolate chip cookies — a huge container of dozens of them.  Lori’s thoughtfulness will provide some pleasure for days to come — actually longer if I get some into the freezer before we devour them all.

At McFarland’s Mary Ann worked on the Quiche she had ordered for a full hour after the food arrived at the table.  I offered to help in one way or another at various times, trying not to make her feel as if I was rushing her.  She would not accept any help.  She struggled to get pieces on the fork that were secure enough not to fall off on the way to her mouth.  Toward the end of the meal she did allow me to cut a large piece of watermelon that accompanied the Quiche into smaller pieces.

After that hour, she had eaten about 30% (at the most) of the Quiche and one small piece of the melon, none of the rest of the fruit on the plate.  Of course people had come and gone all around us.  The folks who sometimes come, eat, and play bridge were starting to play at the table next to us.

I left the tip, got Mary Ann into the wheel chair, gathered the take home container and her purse together so that we could pay the bill and head to the car.  When I put the check and the twenty dollar bill on the  counter in front of Walt McFarland, the Owner, he just wished us a Happy New Year and did not pick up the twenty.  He said it was on him.  It is surprising how powerful kind gestures can be when a person is stressed and struggling.  He carried our containers out to the car and opened the doors for us on the way there.  Mary Ann just can’t negotiate styrofoam containers without crushing them or losing them off her lap (understandably) as the chair moves.  As a result, I have the challenge of holding the styrofoam containers (leftover meal and left over Coke in a takeout cup), pushing and steering the wheel chair, getting the doors open and holding them open so that we can get out.  Walt is a good guy!

Mary Ann started trying to get up this morning at 4am.  Between then and about 8:30am there were the usual snacks, little plastic containers of applesauce and tapioca pudding, some commode trips, some arguing about my need for her to stay in bed so that I could accumulate enough sleep between tasks to function during the day.  When we got up, she was determined to make sure we got ready in time to attend the funeral.  She was alert about many things at that point, except that there were things she could not do by herself.  After getting her usual yogurt and cereal to eat with her pills, I wanted her to sit securely in her chair while I showered and dressed. She could not sit.  She was too determined to get ready to go.  She said I could take my shower while she got dressed.  She hasn’t been able to get dressed by herself in a number of years.  I got her completely ready to go, and finally she was willing to stay seated long enough for me to get ready.  We had plenty of time.  We were ready almost an hour before we needed to leave.  By the time we left, she had sort of shut down mentally and physically.  We were able to get to the funeral, but not without much difficulty.

When we got home after the meal, she was not tracking well.  I asked her if she needed to use the bathroom; she said yes.  I was trying to tranfer her from the chair to the toilet stool, and as she was standing up, she began reaching forward and down. I asked her what she was doing.  With a very irritated tone that I could not see what was so obvious to her, she said she was washing her hands.  I don’t remember what I said, but I managed to get her seated and afterward get her to the bed for a long nap.  Just before she awoke, I had opened and shut the front door, leading her to decide that she had missed Zach and Erin coming by with there new baby.  She had been dreaming and, as she admitted at that point, she can’t tell the difference between dreams and reality.  Later this evening she told me that she had just seen me smoking a cigarette.  Other than a few days in college almost fifty years ago, I have never smoked cigarettes.

This has been and continues to be and interesting time in our journey.  There seems to be some transitioning going on for both Mary Ann and me.  I am not sure to where we are transitioning, but I guess we will figure that out as time goes by.

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 13, 2009

Granddaughter Shines!

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She watched the director, knew the music, sang with her mouth open wide just as she should, and brought some joy to her Grandparents (and, of course, her parents).  This Grandpa loved every minute, since singing was in the center of my life during most of my first two decades of life, and has remained a love until now.

We drove a little over an hour to the church at which Chloe’s choir performed.  Her other Grandparents made a trip more than twice that length to come to the concert.  The choir is sponsored by the University of Missouri, Kansas City (UMKC). Auditions are required to be able to sing with the choir.

Then logistics needed to accomplish the day’s activities were not always easy.  Churches try hard to be accessible for the handicapped, but old buildings often will simply not cooperate in the task of becoming welcoming.  We thought it wise to make a bathroom stop before the concert.  There was an accessible bathroom inside the ground floor doors near a handicapped parking spot.  The doors were locked to force the attendees to use a door that would allow entry to the room from the back.

Gratefully, we got the attention of then attendant who let us in and waited while we used the restroom.  The need to change the pad due to incontinence resulted in removing shoes that are difficult to get on and off.  We used an elevator to get to the floor on which the concert would be held.  As a result of the time spent in the bathroom, we barely made it in through a door in the front of the room, the same door through which the choirs entered.  We were directed to the indentation in the pews for wheel chairs, but all the seats around it were filled.  Gratefully, a family offered to split up with Dad moving the pew behind so that I could be right behind Mary Ann.

After the concert, to get to the reception area, we had to return the same way, take the elevator to the lower level, pass through the kitchen, and then arrive at the reception area.

Before the concert, we ate out together.  The handicapped parking spaces were a block from the restuarant.  To get to the booth, we had to go through the serving area.  Booths are always a bit of a challenge.  Ordering was pretty difficult, as it always is, since a compromised executive function of the brain is among the first of the problems to emerge with Parkinson’s Disease Dementia (Lewy Body Dementia).  She really struggled to track and then decide what to order.

Again, getting the food to her mouth, coordinating the straw so that she could drink did not go very well.  Then twice, she just fell to the side. [See an earlier post on leaning to the left.]  After the second time, I moved from sitting in the chair that had been added for me, to sitting right next to her on the booth bench, with my body supporting hers.  When we ate at BoBo’s earlier in the week, she had fallen to the right twice while sitting in the booth.

After the concert we had a nice time with the kids at their house, along with Daughter-in-Law Becky’s parents.  Mary Ann was sitting off to the side a bit since she needs a hard, straight-backed chair to keep from being trapped in the chair, unable to assist when she needs to get up.  I stood near her so that the conversation would include her, even though she said only a few words.

I need to ask the kids to confirm, but today seemed to indicate that Mary Ann has lost ground in the recent past.  I am beginning to accept the possibility that this is just the way it is now — that we have moved to a new normal.

When we left their house, we headed down to see the Plaza Lights.  Kansas City is a beautiful place for the most part.  The Country Club Plaza, built in the 30’s with all the buildings done in Spanish Architecture, is a wonderful spot.  There is a huge fountain on one end.  There are parking garages built with the same architecture.  There are horse drawn carriages, people walking the sidewalks.  There are lots of exclusive stores, most having very expensive merchandise.  The lights outline all the buildings and have been put up from Thanksgiving through Christmas for many decades.

We lived in an area a mile or so south of the Plaza for fifteen years.  Our children grew up there.  It felt wonderful tonight to be driving those same streets that had become so familiar.  I realized how much I miss the feel of a metropolitan area that has people walking about, families, young people, folks out walking their dogs, local ethnic restaurants, curved streets, tall trees everywhere.  I guess we just fell in love with Kansas City during those years there.  As we drove, Mary Ann admitted that she would still like to move back to KC.  There are a number of reasons that pretty much eliminate that option, but this is not the first time she has said that.  One of the reasons moving back is unlilkely is that the house we bought for $22,500 in 1972 was on the market a couple of years ago, listed at $310.000.  What is it they say, “location, location, location.”

All in all, today was a good day.  While there were signs of Mary Ann’s apparent decline, the joy of getting out, hearing Chloe sing, enjoying conversation, and seeing beautiful Christmas lights more than compensated.

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.

 

December 3, 2009

Frustrating Meal Out

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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.

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

 

September 10, 2009

Caregiver’s Friend: Spray and Wash.

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We splurged and ate at Texas Roadhouse.  It is not exactly a gourmet restaurant, but the beef is tasty and prepared well.  Most of all, those sweet potatoes are spectacular.  They have managed to make a veritable health food into a diabetic’s nightmare.  Gratefully, neither Mary Ann nor I have added diabetes to our collection of ailments.  Frankly, given the amount and regularity of our ice cream consumption, I  have no idea why we haven’t both joined the ranks of those with type II Diabetes.

Mary Ann chose the Texas style beans as her second side.  She had white slacks and a turquoise and white top. The combination of twenty-two years of Parkinson’s Disease, a light stroke that effected her right side, and the Parkinson’s Disease Dementia, a Lewy Body Dementia, has made negotiating eating utensils very difficult.  Both the stroke and this particular version of dementia affect the portion of the brain that organizes things in relationship to one another, spatially.  As a result, getting those beans out of that little bowl and into her mouth was no small challenge.

The rule when we go out is that Mary Ann does everything herself, unless it is absolutely impossible for her.  That is her rule.  She will often allow me to cut something into small pieces if it doesn’t come apart easily using only a fork.  She did allow me to cut the meat for her.  I could do that discreetly by reaching across the table.  Feeding her the beans would have been out of the question.

It is interesting to me that she seems not to be at all self-conscious about the food moving out of the dish or plate on to the table, where she chases it to try to get it on to the fork or spoon.  The problem with dexterity and the spatial issues along with her penchant for shifting to the left, with the food then traveling over her lap to get to her mouth, resulted in lots of deposits on her clothes the color of the sauce on the beans.

As soon as we got home, the spray and wash came out and a load of clothes went in.  (I just had to take a dryer break — it is all folded now.) There is seldom a load of wash that doesn’t include a few items sprayed with Spray and Wash.  The Plavix and aspirin combination that Mary Ann takes to help prevent another stroke thins her blood enough that there is often some oral and nasal bleeding at night.  Sheets are almost always sprayed before going in the washer.

I haven’t asked the online group of Caregiver Spouses how many others go through large quantities of Spray and Wash, or something like it.  I suspect that the few hundred in that group contribute a great deal toward the job security of those who manufacture it.

Just as a follow-up to the smoke alarm fiasco on Sunday morning, the security company phoned to say that there will be no charge for the service call coming this Friday.  They determined that our system is so old (almost twenty years), and we have paid for it for so long, that they will upgrade the system at no charge.  That is good news.  I am suspecting that the reason the signal was not received by the dispatcher when the smoke alarm went off was that the system is obsolete.  I am not so naive that I did not check and determine that there will be a contract available that day for me to sign, raising the monthly fee to provide ongoing maintenance.  I should still have the choice that day to decline the offer.  My expectation is that we will still receive the free upgrade.  We will see.

Last night was another restless night.  Here is hoping for a good night’s 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.