She got out of the car and walked up the steps into Dick and Dee’s house.  It was a bit of a walk, but rather than stopping to get the transfer chair from the van, we just walked into the living area to sit down.  I brought the transfer chair into the house, but from then on, it was never used.

We talked for a while.  Dick is also a retired pastor, and Dee has been very involved in church activities.  Not only that, but they both, especially Dee, are avid birders.  They love the wildlife and the outdoors.  They have built a heavenly respite with a wall of windows with deck and bird feeders framing the view of a very large pond surrounded by trees.  Between family and church, birds and other wildlife, we had lots to talk about.  You should hear Dick’s raccoon stories.

We visited with our Nephew, Tom, who shares the love for birds, the flora and fauna.  Our Niece, Jill and her three boys came by.  It was a very pleasant and satisfying mini-family reunion.

Then came dinner.  Much to my dismay, the lavish meal of mostly homegrown, nourishing and tasty foods dramatized the paltry fare to which Mary Ann is subjected on a regular basis.  We both ate voraciously, realizing we would be back at our usual table soon.

Later we went next door to see Jill’s newly built home.  Mary Ann walked outside to get in a golf cart that delivered her to the garage of Jill’s home.  That is when the walking began in earnest.  The house is huge, well-designed, woodwork done by Amish artisans.  We walked from one end to the other, enjoying what would put to shame most of the Home Network’s best.

After touring the house Mary Ann walked back to the golf cart, rode to Dick and Dee’s place, walked into the house, and we talked some more.  Then she walked out to the van so that we could head back to the motel.

Those of you who followed the events of a number of weeks ago will appreciate the significance of that walking.  After going through a time when Mary Ann could walk only a few steps, sometimes not even that before fainting, this was a pretty dramatic display.  I conditioned myself to jump up and either help her walk, or ask her to sit back down so that I could move her from one place to another in the transfer chair — seeking to avoid a fall that could do damage to her.  As this roller coaster we are on moves up for a time, it seems that I need to re-condition myself to just let her walk.

The harsh reality is that tomorrow may bring another dip in the ride — but maybe not.  It is a challenge to re-train my auto pilot to respond differently when she gets up.  It is encouraging to see her walking so well.  My hope is that the more she walks the better she will do at it.  She has gone down but not very often.  For the most part, I still stay very close, often with my hand lightly on the gait belt or holding her more tightly.  If she seems to be walking well and she is on carpet, I back off.

A few weeks ago I was wondering if we were beginning the endgame.  That thought has retreated for now.  The fall weather is energizing, and Mary Ann seems have perked up also.  When we were walking into the house, having just returned from our week long trip, after 11 hours on the road in pouring rain, she said “that went pretty well.”  Last summer I thought our traveling days might be over.  At least for now, it seems not be so.  In two weeks we head for our very favorite Bed and Breakfast in Hot Springs, Arkansas, Lookout Point – Lakeside Inn. []  There is no knowing what will be so when the time comes to load up and head out for that trip.  For now, we will just enjoy the moment.

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.

After the litany of travel challenges in my last post, we have decided to add two days to this trip!  Are we crazy?  Maybe.  The challenges have continued. Tonight, as I was doing some pre-loading of the car to save time in the morning, I changed shirts to take the one I was wearing to the car.  The moment the door of the room closed behind me, I realized what I had done.  The keycards were still in the room since I had taken them out of the pocket of that shirt.

I was locked out!  Under normal circumstances, the solution would be simple.  Knock on the door and ask Mary Ann to open it and let me back in.  She was lying on the bed no more than five or six feet from the door.  I knocked on the door loudly, calling her.  Finally, I heard her voice.  She told me to wait a minute.  After a short time, I called out to her again.  That went on for a few minutes until finally she said, I can’t get out of bed.

I ended up downstairs at the desk.  The young man behind the counter had to give me a master keycard.  Mary Ann was on the bed on her back simply uable to coordinate getting up to turn the handle so that I could get in.

In the morning, Daughter Lisa will arrive with Granddaughter Ashlyn fairly early in the morning by our standards.  Lisa will give Mary Ann a shower, take her shopping and then to lunch.  I will take Ashlyn on her class trip to the pumpkin patch.  Those activities are the reason for adding one day to the trip.

Since we are only two hours away from my oldest Brother, Dick and his wife, Dee, we decided to travel there, get a motel and visit with them for the evening. That is the second day we are adding.  Neither Mary Ann nor Dee were up to traveling to the family gathering in Northern Illinois this summer.  This is a chance to make up for missing that time together.

The next two days will reveal whether or not it was wise to extend the trip.  So far we have dealt with the problems encountered as they have arisen.  My hope is that whatever is yet to come will be manageable.  We will take it one day at a time.  Gratefully, that is exactly the rate at which it comes, whatever it may be.

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First hugs from the Grandchildren answer that question.  It just isn’t easy!  Of the many things that are more difficult when traveling as a Caregiver, one of the most frustrating is the sole responsibility for packing. 

I remember hearing from single parents and those who have lost their spouse in death one of the most difficult challenges is making all the decisions without access to consultation.  There is no one to ask, should I let the kids do this or not — should I do that repair on the house? 

When packing for a trip, each has a certain amount of responsibility for remembering what to bring along.  There are endless decisions to be made.  What clothes should we bring so that we can be fitting for weather and formality of events.  If we bring one color/style of shirt or top, there need to be shoes and socks and slacks to match. 

Decisions are tough to make at best when one has the beginning stages of dementia and the other isn’t exactly on his best game.  I asked Mary Ann what she wanted to take along.  She wanted what I call her fancy pants and top.  The most hated black shoes with short heels are a part of that outfit.  I hate them (not too strong a word) because they are treacherous for her to walk in and they refuse to stay on her feet — I am chasing them constantly.  Their favorite trick is to pop off midstream in getting on or off an elevator, going in or out of a door.  Maybe it was due to a subconscious aversion to them that resulted in my forgetting to put in the knee high nylons that she wears with them. 

I work very hard at creating and sustaining certain rituals associated with medication so that there are no missteps in having what is needed, and administering it on time each day.  There are, of course, multiple prescriptions, many including more than one dose a day.  There are four compartments in each day’s plastic pill holder.  The morning one has six pills, the next one has six pills spread through the day, the next compartment has three pills spread through the day, and the night time compartment holds four pills.  There is also a powder to mix with water or juice four of the seven mornings each week.

All of it was in order for the trip, along with all the meds needed to refill the compartments for the last half of the trip.  At least that is what I thought to be true.  Saturday, after returning for the night to the extended stay motel, I began filling the compartments.  To my horror, there was no pill jar of Midodrine there.  That is the powerful med that raises Mary Ann’s blood pressure to keep her from fainting.  To stop cold turkey the next morning would be dangerous.  When I have adjusted that med in the past, the doctor has insisted that the dosage be raised or lowered a small amount at a time over many days. 

What had happened?  I had broken ritual.  The caps of the medicine bottles are numbered (Mary Ann’s idea many years ago).  Refills not yet in use have no numbers on the top.  I transfer the old cap to the new bottle when the old one is empty.  I had not put a numbered cap on the new refill of Midodrine already in use.  I grabbed only the numbered cap bottles.   

As I sat there Saturday night, looking at the pills, my panic shifted quickly to planning.  I am grateful for the national database maintained by Walgreen’s Pharmacy.  I phoned the nearest 24 hour Walgreen’s here in Louisville, KY.  They accessed our account in Kansas.  While we normally use mail order meds, the recent change in dosage had required a short term prescription at Walgreen’s.  There was a current prescription that could be filled here to rescue us from our distress. 

After I phoned and was told the refill would be ready in 45 minutes (about 11pm), I resumed filling the bottles.  To my chagrin, the Thyroid med bottle only had two pills left in it.  I suspect you can imagine just how horrified I was at my own incompetence.  This morning I suggested to Mary Ann that she might want to trade me in on a more competent Caregiver. 

This med will demand a new prescription from the doctor, since we have only the mail order prescription open.  The request is now in the hands of the Pharmacist who has assured us that by tomorrow afternoon it should all be worked out.  Gratefully, the two pills will cover Mary Ann until then.

The other travel trouble is less appropriate for publication.  It is in the area of the Caregiver’s role in waste management [see earlier post].  There has been a difficulty in that area demanding my hands on involvement for three days now, with two or three sessions each day.  Those problems seem much more troubling when dealt with away from home.

Since there is a need for a handicapped friendly environment in which to stay, the costs of traveling have increased dramatically.  Staying with folks in their home, no matter how gracious and welcoming they are, is often simply not an option.  Lodging costs add up at a frightening pace.  A trip that we have in the past made in one day, now demands an overnight stay, adding still more to the costs. 

It is a little embarrassing just how long it takes us in the morning to get ready to leave the room so that we can start the day’s activities.  The usual multiple times up at night make early rising a less than satisfying option.  The result is that there is not so much time for doing things together each day, the object of the travel. 

While this is a litany of struggles that come with traveling, the hugs more than compensate –  the smiling, enthusiastic little faces drain away the frustration and replace it with joy and satisfaction. 

Is traveling worth the trouble?  Yup!

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.

We asked for sleep, got sleep.  Then got no sleep.  Almost as soon as I hit the publish button after writing last night’s post, Mary Ann woke up and a restless night ensued.  She had been up all day, she was up most of the night last night, up all day today.  I was worried that my decision to increase the Seroquel had initiated a cycle of too much sleep???  No more worries on that front.

I did work at keeping her up today.  She had Small Group Bible Study in the morning, followed by a trip to the library.  This afternoon when she started to doze in her chair, I made the sacrifice of taking her for ice cream — just to keep her awake you understand.  She went to bed a bit early, slept for an hour, and woke up.  She has now taken her night time meds.  She seems to be moving a bit, but at least at the moment, not getting up out of bed.  We will see how the night goes.

Ev commented on last night’s post, reminding me to enjoy the gift of a good night whenever it comes, since folks with LBD or PDD often have bad nights.  It just comes with the territory.  Well said! Our task is to accept that we can’t control or manage this disease.  Very little of what happens can be predicted or impacted by what we do or don’t do.  We need to learn to take what comes, make the best of it, sometimes whine a little about it, and then move on to deal with whatever comes next!

Tomorrow afternoon we will head off for Kentucky to visit our Daughter, Lisa, Denis and the girls, Abigail and Ashlyn.  The girls have a few days off school.  We are taking two days to drive there.  For us, at best it takes about ten hours when done in one day.  Hopefully, this will make the trip a bit easier.

Since this summer’s decline, even though there has been some improvement, we are not going to try to stay in the downstairs room, requiring a trip up the stairs each morning and down again at night.  We will stay in a motel.  That will impact dramatically the cost of the trip, but will be much easier on both Mary Ann and me.  It will be a treat to see the girls especially.

I should have access to a computer while we are in Kentucky, so there may be a post or two while we are on the trip.  Here is hoping the trip goes well for Mary Ann especially.  We have another trip to the Bed and Breakfast ini Hot Springs, Arkansas scheduled for the last week of the month.  It is a lot to tackle, but we have to do what we can while we can.

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.

How could it be anything but great when the destination was Braum’s Ice Cream and Dairy Store, and the reward was one Hot Fudge Sundae with pecans for me and one Pecan Caramel Fudge Sundae for Mary Ann?

We spent three or four hours mostly on the road, country roads, traveling nearly 150 miles by the time we returned home.  Madness, you say?  Not really.  While the destination was great, the trip was at least as great.

I am not much of a reader and, as a result, not a writer.  I envy those who have the vocabulary to write descriptively in a way that gives the reader the feeling of being there, experiencing the sights and smells, the layered depths of panoramas that could never be captured in a two dimensional medium.

I am at a loss to describe just how beautiful the day was, the fields and flowers and farms, the colors and textures of this Eastern Kansas landscape.  Between our fifteen years in Kansas City and the almost fourteen years here, this is just about the strangest summer we have ever experienced.  Throughout the summer there have been only a half dozen or so days that were the usual impossibly hot days.  Other than those few days, there have been comfortably warm days and cool nights punctuated every few days with a rain and thunder showers.

The plant life now looks a little like what we saw on our trip to Alaska a number of years ago.  Things are giant.  The Kansas Sunflowers tower over the fields.  The Soybeans look like a different crop entirely they are so tall and deep green.  The corn is tall and only now transitioning into its dry phase, readying for harvest.  Some of the corn fields are still green.

There are huge round bales of hay everywhere.  The fields that have been cut and the bales removed are now that bright green again as in Ireland.  It is as if time has just folded over and spring has become intertwined with fall.  The Sumac is beginning to change color.  The Milo is that rich dark copper color, while that bright fresh green of spring is everywhere in between.

Then there are the flowers — fields of them.  Everywhere that isn’t tilled ground, cut pasture, someone’s lawn, buildings or roads there are masses of Kansas Sunflowers, yellow blossoms of all shapes and sizes and kinds, blue wildflowers, purple thistles in blossom, white Snow on the Mountain and other white flowers, all mixed together with the dark tones of mature weeds and grasses fully in seed.  It has always intrigued me that in nature, colors that would never be put together by anyone aware of what colors should go together, look just right when mixed together in the patches between the road and the fence or stretching out in an uncut field of weeds.

The Flint Hills can take a person’s breath away.  They extend as far as the eye can see.  Today there was enough moisture in the air that the mist differentiated clearly layer after layer after layer of hills as they rolled off into the horizon.  The closer hills on the fringe of the Flint Hills were separated from one another by ribbons of trees, wherever water settled after rains or there was a creek flowing (maybe trickling — this is Kansas) between and around them.

The moisture in the air at the moment also provided wonderful cloud formations to see.  Our trip began in mid-afternoon and extended into the very early evening.  The sun began to provide shadows that had an interesting effect on the Sunflowers.  Not only do the sunflowers tend to face the sun and follow it during the day, when they were out of the direct sunlight, the color seemed to change from the bright yellow to a deep rich golden buttery color.

There were few birds to be seen, a hawk lifting up and passing just in front of the car, a few Scissortail Flycatchers, the ubiquitous doves and starlings, and a cluster of Turkey Vultures circling in one area.  By the way, I discovered that a group of Turkey Vultures when perched together is called a “wake” of Vultures. That may come from their sadly hanging heads when they perch.  Then there is a Parliament of Owls — but I digress. I saw no owls.

While Mary Ann doesn’t enjoy the rides in the country as much as I do, she did read some in a book she has on the trip to Braum’s.  She seems to be able to read with the outside light in the car far better than she can with the lights in the house.  She put the book away for the trip back and seemed to enjoy the sights.  All in all, it was a good day.

Just an update on the smoke alarm excitement last Sunday morning:  The security system Tech came today.  He concluded that at some point one of the techs had entered a code incorrectly, resulting in no signal from the smoke alarm reaching the dispatcher’s console.  He also suspected that dust in the sensor had made it hypersensitive, resulting it going off with less smoke than should have activated it.  By the way, he was interested in seeing the manual that came with our system around twenty years ago.  He had never actually seen that original book.  He assured me that the book was still accurate and that our system was fully functional even though old.  He did not have with him or try to sell me an extended contract — for which I was grateful. There was no charge for his services.  Now there is a reversal of the good news/bad news of Sunday morning.  The good news Sunday was that there were no fire trucks roaring into the neighborhood as the horn went off.  The bad news was that no fire trucks came when the sensor went off — what if it had actually been a fire?  Now comes the reversal.  The new good news, the fire trucks will come if there is a fire, the bac new, they will come if there is no fire and I don’t get the alarm turned off soon enough.

Well, unfortunately, the evidence on the monitor seems to be pointing to another restless night.  We will see. I keep forgetting to tell the bath aid, who comes twice a week and changes the bedding on Wednesdays, to use only the white or checked sheets and not the print with the flowers.  Mary Ann always has problems seeing the images on the print sheets as something moving or spots or threads needing to be removed.

For any who are concerned that the time stamp on these posts seems to indicate that they are written in the wee hours of the morning, the time stamp is Greenwich Mean Time, five hours ahead of Central Daylight Time.  It is now a little after Midnight, not 5am.

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.

It has just turned into an impossibly frustrating night.  Mary Ann is in hallucination mode.  We were on hands and knees with her face within inches of one of the wheels on a leg of the bed, and she said, there it is, the baby raccoon.  Not long before that, she told me a raccoon had “taken a dump” on the sheet at the foot of the bed, and asked me to clean it up.  It took a long time of looking at that sheet for her to accept that the poop was no longer there, although since then she has not allowed me to pull the sheet up over her.  For the last half hour she has been picking up needles with thread in them from the floor.  I turned on the overhead light with four 60watt bulbs burning brightly and put her glasses on her face so that she could see clearly what was and was not there.  She still kept picking up the needles fearful that someone would get them stuck in a foot.  

I am now at the computer looking at her on the video monitor as she is leaning over the side of the bed busily trying to pick up things from the floor.  I am helpless to do anything about it!  I can only hope that at some point she will get tired enough that she will lie down and go to sleep.   She went to bed at about 9:30pm, it is now 11:30pm.  This could go on for hours. 

Tonight there was a Volunteer here with Mary Ann so that I could be at the computer attending an online Webinar provided by the Progressive Supranuclear Palsy (PSP) online support group.  PSP is in a family of diseases that overlaps with Lewy Body Dementia (LBD).   Parkinson’s Disease Dementia (PDD) is a Dementia with Lewy Bodies. 

While the specifics of PSP are somewhat different from PDD, the Caregiving dynamics are pretty much the same.  The primary presenter tonight was Janet Edmunson, whose husband, Charles, was diagnosed with PSP.  After he died, the autopsy revealed that a more accurate diagnosis was Cortical Basal Ganglionic Degeneration (CBGD) which is another in the family. 

One of the characteristics of PSP that she mentioned certainly rang true for Mary Ann (who is now up and at it again in the bedroom).  She called it impulsivity.  That means the person remaining convinced that he/she can still do things he/she is no longer able to do. 

I just made another trip into the bedroom to see if I could do anything to help her settle.  This time as I was trying to get her back into bed, she told me that she was cold and wanted to go home.  When I asked her where she was, she didn’t know, just that she was cold and this wasn’t home.  I asked her to lie down for a while under the covers so that I could finish writing and come to bed.  As she was starting to lie down, Mary Ann commented that the girl was going to fall on her head, but then the girl didn’t.  When I asked who it was, she said, Lisa (our Daughter).  When I asked where Lisa was, she said she was on the wall.  When I asked her if it was the real Lisa or a picture, Mary Ann said something about “the pick of the litter.”  She did recognize when she said that that it made no sense. 

Back to the Webinar.  Janet Edmunson listed some suggestions for Caregivers. 

  • Determine what you are passionate about and find a way to spend at least a little time regularly, keeping it in your life.
  • Explore life’s adventures, store up memories while you and your Loved One are able. 
  • Give yourself credit, affirming just how strong you have been even when pushed to the limits.  She quoted Eleanor Roosevelt’s comparing people to tea — we don’t know how strong we are until we are in hot water.
  • Give yourself grace (forgive yourself) when you blow it.  If you seem to be “blowing it” extremely often, get help. 
  • Accept that some friends will no longer visit, especially when your Loved One can no longer communicate.  It doesn’t mean they no longer care.  Suggest that they come in pairs so that they can talk with each other as your Loved One simply listens. 
  • The personality changes in your Loved One are not your Loved One, but the disease.  One of the consequences of the disease is that the filter, the value system, gets eroded. 
  • Consider using Hospice sooner rather than later.
  • It is normal to grieve even before your Loved One dies.
  • Look for gifts that only this type of tragedy can afford.

She concluded with this wish for Caregivers: May this make you better, not bitter. 

Well, I think I had better get into the bedroom and see if my going to bed helps any.  Her head has stayed still for the last few minutes.  By the way, when she was first getting into bed tonight, for some reason she asked me to take her blood pressure.  It was 110/70.  Can’t ask for better than that.  Her pulse is usually 60 or less, but this time it was 89.  I suspect the excitement of the hallucinations may have increase her heart rate.

It is now 12:30am.  Here is hoping and praying that she can stay settled for the night. 

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I have come to think that for all of us, but especially those with chronic, degenerative, life-threatening diseases, very many of our choices, big ones and little ones, can be framed as choices either to live or just fill time until we die.

At the Parkinson’s Support Group meeting while back, there were a number of people present who have had Deep Brain Stimulation surgery (see the June 4th post on this blog for a description of the procedure) to lessen the symptoms of their Parkinson’s.  When I thought about it after the meeting I concluded that those who chose the surgery were choosing life.  They were choosing not to simply bide their time as the disease progressed.  While people don’t die of Parkinson’s, the Disease often in some way plays a significant part in their death.

Of course not every decision we make is on the scale of whether or not to have DBS surgery.  With that said, I have begun to think that we can ask of very many of the decisions we make, are we choosing life, or simply filling time until we die.

I have been wondering lately if in our care giving and receiving mode, we are settling into a routine that is more about waiting and filling empty spaces of time than it is about living meaningfully. Every time we set foot out of the house to eat or shop or go to a public place, a meeting, worship service, to see our kids, to go for a ride, it is a major hassle.  We are always at risk for Mary Ann having some sort of problem that is much more difficult to handle away than at home.

When we eat out, it is often pretty hard to get food from the plate to its intended destination without some of the food taking a side trip to shirt or lap or chair or floor.  Just the logistics of getting to the table to eat in the first place is not always very easy.  When we attended that Parkinson’s meeting, there was unexpected intestinal activity that was pretty tough to deal with in a very inaccessible bathroom while a couple of folks we had enlisted to watch the door waited for what must have seemed like an eternity. Heading out for a drive of any distance can present the same sorts of problems.

It is so much easier to stay home and expand little tasks to fill more time than needed, to expand their importance and create the illusion that they are more satisfying and meaningful than they really are.

It is surprising how hard it can be when making a choice to determine which option is choosing life and which is just filling time.  For Mary Ann, watching television fills a void created by losing the ability to do most of the things she used to do for pleasure. However, watching television is also a very addictive life waster — something just to make the time go by more quickly.

There are times when watching a television program or DVD can be informative, mentally stimulating, very entertaining, refreshing and renewing.  There are also times when the television brings nothing to us, but rather consumes our lives, providing no real nourishment, just empty calories.

After procrastinating for a number of days, when finally we actually did do some flower planting outside, it seemed to be time we were living, not just waiting.  When we push ourselves to commit to something, a trip out, a visit, attending an activity, it is often life-affirming.  The temptation is to find some reason just to stay home, to do something familiar, something that in no way stretches us and stimulates us to live life to the fullest.

It is not as simple as concluding that staying busy is the way to fill our lives with meaning.  Busyness can be as life draining as watching reruns just to make the time go by.  For me, sitting alone, listening to a CD of an interesting piece of music, thinking and processing things mentally, calming my spirit, I find to be life-affirming.  Sitting on the deck, watching clouds and listening to birds is meaningful and productive time.  Quietly reading something that is engaging and mentally stimulating or spiritually nourishing is life-affirming for me.

Choosing to spend time with others is choosing life.  After a few days of talking about doing so, last week we called a couple of friends who, gratefully, were able and willing to say yes to a spontaneous invitation to go for a drive in the country.  The day was beautiful, the scenery was stunning.  We stopped at our favorite potter’s studio.  We stopped for ice cream in a picturesque small town in the area.  We tasted wine at a winery outlet, very tasty wine. (I know, ice cream and wine??)

Mary Ann chose to attend a salad luncheon with friends at church last Wednesday. While it was not expected of her, she insisted that we bring a salad – another foray into the kitchen.  Friends invited us to come down the block one evening for cookies and conversation.  The time together was not only entertaining but nourishing to some meaningful relationships.

It is very tempting to avoid the hassles and just stay home.  What was the catch phrase in those old Nike commercials: Just do it!  We have committed to a ten hour trip to Northern Illinois for a family celebration at the end of July.  From there we bring our oldest Granddaughter with us to Kentucky to spend time with our Daughter and her family.  We just received another wonderful thank you gift from the congregation I served. We provided a free place for the new Pastor to stay for a few months, waiting for his family to be able to move here.  The gift is a trip to our very favorite Bed and Breakfast in Arkansas — another long trip, but exceptionally life-affirming.

Choosing life is not always done in huge life-changing deciaions. Choosing life is often done one tiny decision at a time.  The cumulative effect of those little decisions determines whether we are living or just waiting until life is over.

Whether the choice is to undergo major surgery to provide hope of an improved quality of life, or to get out of the house and head down the block for cookies and conversation with friends, the choice is ours to make.  Either we choose life or just wait until it is over.

When given a choice, my hope is to have the courage to choose the option that is life-affirming rather than life-wasting, and, as the Serenity Prayer says, to have the wisdom to know the difference.

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.

Have you ever been horrified at your own pettiness?  I am!

We just returned from a trip that took us first to visit with dear friends in Grove, Oklahoma, at their home on Grand Lake.  What a beautiful spot!  Then we spent three nights and the days at Lookout Point Lakeside Inn Bed and Breakfast in Hot Springs, Arkansas.  We finished the trip at Eureka Springs, Arkansas and returned home last night, after a detour to Emporia, Kansas to have a Sundae at Braum’s.  Arkansas is overwhelmingly beautiful at this time of the year.  Dogwoods were blooming throughout the tens of thousands of acres of woods through which the roads wound.  Everywhere we looked it appeared as if there was a layer of pure white snow hanging above the floor of the forest.

As I reported in my last post, after a challenging first night at the B&B on account of some middle of the night issues with Mary Ann, and a physically draining, beautiful visually but draining day, we returned to our room.  The one handicapped parking space that allowed us to enter the B&B on the same level as our room was taken by a vehicle without a Handicapped Plate or sticker. Gratefully, there was a second space in that same area.  It was available.

We relish the handicapped parking spaces since we need room to bring the wheel chair to the passenger side of the car so that Mary Ann can easily move into it.  When she is mobile (which is most of the time) she can walk to the back of the car to get into the chair.  There was enough room to get the chair between the cars.  There was actually no real inconvenience to us.

It is true that I was concerned that the folks who had been using that lower non-handicapped spot would be annoyed that I took their spot.  It is true I was concerned that if we left in the car someone else might take that non-handicapped parking spot, leaving us the only other option of parking in an upper lot with a very steep incline to the lower door.  Upper doors led only to stairs stairs inside, not negotiable in a wheelchair.

Yes, I had reason to be annoyed.  I assumed that the person who used the spot was just another one who ignores any efforts to make life easier for those of us who have special needs.  It is always a struggle to find a way into any public place, stores, restaurants, museums, especially those in older buildings or small venues without the resources to make major modifications to their place for easy access to wheelchairs.  But we had no real problem getting to our room.  It was fine!

I couldn’t let it go.  I complained to the Innkeeper at the desk.  I saw a group meeting in the dining room and assumed someone there was the culprit.  The vehicle had indication of an organization on the door.  It seemed logical to me that the group meeitng was for folks in that organization.  I was right.

I kept checking to see if someone went out to move the vehicle.  I just couldn’t let it go!  Even though we were fine, I stewed about it.  The group met for hours.  It was not until they broke up for a late supper that I saw some of them head down the hall toward the lower parking spots.  I went out to move our van into the handicapped spot when they left.  I couldn’t keep from asking the driver if she realized she had parked in a handicapped spot.  She said yes.  She added that they (the B&B Staff) told her it was all right.  I went on to tell her about our need with the wheel chair.  I spoke with attitude, and she was not apologetic.

Caregivers sweat the small stuff.  We had not actually been inconvenienced.  The driver had been told she could park there.  The Staff person who gave permission made an error in judgment, but she did not intend to cause us a problem.  It was small stuff!  Not to me!

The more I thought about it, the more I realized just how small I had become.  We were in the midst of flowers and birds and serenity and wonderful lake views and sunsets and gourmet meals and afternoon wine and cheese and good people.  We had time to be together as we saw an impressive garden.  We got to dig through mud in search of quartz crystals.  We got to see mountains and wonderfully contrasting colors of conifers sprinkled among the freshly leaved deciduous trees.  How could something of no actual consequence grow to a size that interfered with the celebration of life we were free to enjoy in that remarkable place.

My world has gotten too small.  The realization settled in that I had allowed something to grow out of proportion to its importance.  That problem is mine.  The more I think about it, the more I suspect that those of us who are full time Caregivers are especially susceptible to sweating the small stuff.  Our world is shrinking.  Many of us are virtually house bound.  When confined to a small space, little things look bigger by comparison to the space in which we find them.  When our view of the world is filled by one central task, mostly done at our house, everything we encounter is magnified in our eyes.

It seems to me that the problem of sweating the small stuff is not confined to Caregivers.  In the past, I have noticed that older folks (whatever that means when said by a sixty-six year old) sometimes seem to be so particular.  If the restaurant doesn’t have the sweetener they use, it is to them a big deal.  Older folks seem to be grumpy about little things of no real importance.  I am horrified to discover that I have caught the virus.  I knew I was letting something grow out of proportion to its real importance.  I couldn’t stop.  Nothing I did cured that particular expression of sweating the small stuff.

That particular outbreak of the virus finally subsided.  I talked with the owner of the B&B who explained that they often did give permission for people to use that spot if is was not needed.  She apologized that the permission had been given in light of our need.  I made a point of connecting with the driver I had scolded to apologize for my tone with her.  She had just done what she had been told was all right to do.  She had a back problem that made the stairs very difficult to negotiate, so she had asked about using the spot. She felt badly that it happened.  She valued the importance of honoring that accommodation to the needs of those with physical limitations.

As with most viral infections (metaphorically speaking), there is no cure.  Our world, and, I suspect, the world of most Caregivers, is growing smaller as the Parkinson’s progresses.  To find meaning in our lives even as the space within which we live them grows smaller, we have to work at keeping things in perspective.  It helped me to think about what was happening as I let something small grow out of proportion to its actual size.  I couldn’t stop myself from letting it grow, but by thinking about it and watching it, realizing I didn’t want it to be happening, finally it settled back into its proper place.

Caregivers sweat the small stuff.  I hope that the time and effort spent processing this outbreak of pettiness will help me find the way to better perspective sooner next time a bit of small stuff starts to grow.

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The following is quoted ( some paraphrasing) from some journaling I did the other night while on vacation at a Bed and Breakfast in Arkansas. We had spent a wonderful evening with some dear friends on the trip there.  It was our first night at the B&B. (Let me apologize in advance for the graphic detail – it seemed the only way to explain the challenges of caregiving.) It is a follow-up on my last post on travel preparations:

Ask me now if I would sound so bold and courageous about traveling! It is 3:35am. Mary Ann has had a usual middle of the night need to go to the bathroom. I got her into the transfer chair by the bed and rolled her as far into the bathroom as I could and transfered her to the toilet stool. Pants needed to be changed. That task involved the use of one of those flimsy plastic bags that refuses to open or stay opened to put the completely soaked pad (generic Depends) in. While sitting on the stool, she fainted (low blood pressure due to the Parkinson’s and medication side effects). She was out for two or three minutes while I held her on the stool – no easy task since at that point she is dead weight.

She came around enough to get her to stand up. While I was getting pad and pajamas back in place, she went out again. This time it was a major challenge. As light as she is, holding her up in a standing position when she is cannot assist is beyond the strength in this little sixty-six year old body. I tried to get her twisted around and on to the transfer chair. She slipped off on to the floor. Picking her up from the hard ceramic tile floor put my back in danger of damage. There were no other options that were available. I pulled her up and managed to get her into the transfer chair. I tried very hard to use my legs rather than back, since damaging my back would sabotage our system of survival.   There was a painful twinge.

When finally she was in transfer chair she was still not fully awake. The low BP leaves her brain an without adequate blood supply, so she is often minimally responsive after a major fainting spell. Since the bed was particularly high, getting her into bed so that she did not slide back on to the floor was difficult. I finally got her on the bed, twisted her into position, adjusted her on to her side and she is now secure and sleeping.

On the positive side of the fainting spells and only partial awakening, she has no memory of the events.  Sometimes she doubts that the spells really happened, but she seems now to accept it when I tell her about one.

In the journal, I added that she had had a noisy night before this episode. She was vocalizing and active, obviously having vivid dreams. One of the characteristics of people who experience Lewy Body Dementia is that they have very vivid dreams in which there is bodily movement and vocalizing. The normal dream process includes some sort of automatic disconnect of mind and body. LBD folks seem to lack that automatic disconnect so they tend to act out and speak out what they are dreaming. I have heard lots of laughing, crying, screaming and talking over the years.

Vacationing while having responsibility for someone needing full care is exhausting and frustrating. We spent a significant portion of the evening looking for a Baskin and Robbins Ice Cream store she was convinced she had seen more than once earlier in the day. There was none.

The day after the challenging night included the usual tasks that are added due to the presence of Parkinson’s in our household. As I describe them, I am embarrassed to talk as if they are a burden to me. Many of these tasks are well-understood by anyone who has been the primary parent of one or more children. Those responsible for little ones do many of these things routinely with little or no credit for doing tasks that are terribly difficult and draining. I understand far better what Mary Ann did as a stay-at-home Mom for two children. As I whine about the impact on me of things I do for Mary Ann, she has the primary burden of the disease and the resulting dependence on me to do them. She has more reason to whine than I have.

Morning duties included giving Mary Ann a shower, washing and drying her hair.  On vacation there is no bath aid. The routines at home, provide some security and order that helps us through the days. Vacations provide new challenges. After getting the shower and hair done, comes the medication ritual. There is an Exelon patch to be removed and new one put on. The old band-aid on one skin Cancer must be removed and a new one put on – Polysporin first. Then the other skin Cancer needs to be cleaned with Peroxide. Only after those duties are complete do I start my own morning regimen.

The breakfast as always here was wonderful. We arrived, I moved Mary Ann from her transfer chair to the chair at the table and put the transfer chair aside. Pills needed to be put in a container for her to take with the meal, then the daytime pills put in the timers and the timers set and started. Meals always include getting Mary Ann’s food arranged and prepared for her to eat. The omelet needed to be cut into bite sized pieces, the same with the sausage. What parent of little children has ever gotten to eat food while still hot. It just goes with the territory. For someone debilitated with Parkinson’s Disease, eating is a difficult task. The food tends to slide off the side of the place as it is chased to the edge. The food can end up in lots of unintended places. During mealtimes, my stomach is usually in a knot as I try to determine what to do and what not to do to help, as I watch things heading for a place that will create a mess for me to clean up. Certainly Mary Ann struggles to get meals eaten. She dislikes my help, but often allows it. Meals are more uncomfortable when eaten in a public setting.

The day included a self-guided tour that took us to see beautiful gardens, but demanded pushing the wheelchair for two or three miles on paths, sometimes paved and sometimes not, sometimes ADA approved and sometimes not. The circumstances allowed few options other than effort that got my heart pounding to a degree that left me wondering if I would have to call for help to make it back to the entrance. Today Mary Ann wanted to hunt for diamonds at a diamond mine around here. It was too far, so we ended up spending close to a couple of hours looking for quartz crystals, both of us in the hot sun, me digging through the gooey clay and Mary Ann, while in her wheel-chair, examining the discoveries .

Now that we are midstream in the trip, the question remains. Is it worth it?  It is much harder to handle things away than at home.  The barriers that must be dealt with are many.  We could stay home and watch television.  It would be so much easier.  A trip like this allows us to see things we could not see and do things we couldn’t do at home.  It gets us away, with new people.  It provides exercise and stimulation (sometimes more than we would otherwise choose).

Would we still do it?  Even knowing the realities, at the moment we would still choose to go.  We won’t be home for another two days.  I’ll let you know then if that is still my answer.

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Traveling fools that we are, we are heading out again tomorrow morning.  Having just returned from Kentucky last Monday, the preparations seem to be going more smoothly than last time.

This time we are heading for the most beautiful Bed and Breakfast that could be imagined.  There are ten rooms (one especially for handicapped), all of them facing a beautiful arm of Lake Hamilton in Hot Springs, Arkansas.  Each room has its own patio or balcony.  There is a library, a reading room (both with fireplaces), a heated and cooled sun porch with games and puzzles and areas for conversation.  The decor is elegant without being pretentious.  There are many watercolors by local artists, one artist in particular.  The quality of the art is impeccable.  There is a garden that spills down the terrace toward the lake.  It is laced with paths and a stream divided by waterfalls, the water from a wonderfully gurgling fountain at the edge of the patio outside the dining room.  The garden is filled with trees and blooming shrubs and Azaleas.

The Owners and Staff are welcoming and engaging.  The breakfast is, of course, many courses, all tasty and what I would call comfortable gourmet.  I just made up that descriptor, but it is the only way of saying it that makes sense to me.  The 4:00pm wine and cheese and freshly baked cookies, sometimes fruit, is a relaxed time for conversation around the serving table or for eating on the patio listening to the fountain and the birds that visit the multiple feeders.  By the way Chocolate Wednesday is a special treat!

What I just described I am remembering from a visit last October.  That trip was a retirement gift from the Congregation that has meant so much to us in these last dozen or so years.  Since one of the owners of the Bed and Breakfast is an active Pastor, there are special rates for those of us in the business, making this trip possible for a pastor living on a pension.  This B&B is called Lookout Point – Lakeside Inn,

I am excited about this trip.  Part of the reality of Caregiving is that anything can happen in the next few days as we make this trip.  Tomorrow something may emerge that makes it impossible to go.  We may have any number of problems as we travel.  None of that dampens my enthusiasm.  I cannot know what will happen, so I will enjoy what I can, while I can.  Mary Ann enjoyed our last visit and is motivated to make it work.

As always the preparations are many.  Choosing clothes to take along is a special challenge.  As is the case each morning, I gather as many options for clothing as I can hold and carry them to her as she sits on the edge of the bed.  Often it takes what seems to be an interminable amount of time for her to work back and forth through the clothes as the hangers dig into my fingers.  Deciding on clothes for six days of travel is an exhausting experience for the one holding the clothes.

There are pills to be prepared and put in the plastic seven day, four section each day, pill holder.  Then the bottles of pills need to be along in case anything happens to the ones in the daily container.  There are meds for the two skin cancers that have just been removed so that they can be treated properly to enhance the healing process.  One takes Polysporin and a band-aid each day, the other needs to be dabbed with Peroxide three or four times a day.  The Exelon patches need to come along. The black case with liquid band-aids to deal with the Plavix thinned blood if there is a cut comes along.  There are straws and bandages and wipes and adhesive tape, boxes and tubes and containers filled with all sorts of things that have been needed at one time or another in the past.  All are contained in that black case.

There is the booklet with all the medical information including a list of medications, insurance information, doctors names and phone numbers, her living will.  There are snacks to be gathered for the trip.  There are paper towels for the inevitable spills as we travel.  Both wheel chair and transfer chairs will come along.  We may add the bedside commode if there is room. Those who are in the stage of life that includes young children know how hard it is to gather all that is needed so that the odds of the trip going well are increased.  There are never any guarantees about how it will go, no matter how many preparations are made.

Every time we do this, the usual questions come to mind again.  Should we be traveling away from the security of home and familiar medical resources?  Is it more trouble than it is worth?  What if something happens!!

I guess we have decided that if something happens, it will happen.  We can’t control that.  We can sit at home and wait for it to happen so that if it does, we will be close to the familiar.  We are simply choosing not to sit and wait.  Our reasoning is obvious.  We have what appears to be a limited time remaining with enough mobility to even attempt traveling.  We will do it while we can and not do it when we can’t.  We think we still can, so off we go!

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.