The Caregiver Calling

I almost won this morning.  The alarm went off and I hit the snooze button.  The same thing happened ten minutes later.  I was on my way to shedding this awful presence by the Alien from Pedometer Prime.  Then, somehow, before I was fully conscious of what was happening, I discovered that I was out walking the neighborhood again!  Will it never end???

I have to tell you now something that will make you cringe wih fear.  You need to know in case this happens to you.  If it could happen to me, it can happen to anyone.  As I prepared to shower, I stepped on the scale, something I do on occasion for no good reason other than to be confident I am still capable of weeks of survival, should I be stranded without food.

To my horror, I discovered the truly evil intent of this Alien presence.  It is a flesh-eating Alien!!  There!  The truth is finally out.  Somehow in the time since the Alien took possession, it has managed to eat two to three pounds of my flesh!!  I am not sure what to do.  At supper last night, I ate far more than one person would need to survive a day or two.  The Alien did snatch from me the Sheridan’s Concrete last night as it drove me to walk still another time yesterday.

I keep trying to consume adequate nourishment, but he is consuming my flesh faster than I can consume food.  This is serious.  I need to keep my ab firm.  Most people say ab’s and have what they call a sixpack.  I have chosen to get my abs in bulk instead of wasting all that packaging.  I have one ab, of substantial size and I intend to keep it.  The Alien is putting it at risk!

What shall I do?  What shall I do?

I have now determined just how this Alien presence got hold of me.  I mentioned in passing an interest in developing healthier behavior in front of one of Mary Ann’s Volunteers.  Tamara became an unwitting tool in the hands of the Alien.  At the Library’s annual used book sale, she came upon a book called “The Volumetrics Eating Plan.”  She bought it and gave it to me.  Neither of us knew the plot that was afoot.  In that book, it suggested getting something called a step counter.

Somehow the Alien drew me to Dick’s Sporting Goods.  I don’t do sports!! I listen to music and feed birds.  What could possibly have possessed me to enter a Sporting goods stores.  Well, the Alien, of course. I bought the device and clipped it to my belt.  Clearly it is some sort of sophisticated mechanism receiving signals that provided a path for a full possession of my body and my will by the Alien from Pedometer Prime searching for a human host.

Do you know what that little device, that step-counter is called?  Yes, a pedometer!  That’s it.  There is not even any subtlety about this invasion.  Pedometer Prime brazenly calls its tool for possessing humans a pedometer.  I am entranced by the little numbers, trying to increase them.  It is simply overpowering.

I haven’t given up yet.  My aversion to exercise, my utter lack of discipline, my love of food will eventually win out — won’t it?

On another note, Mary Ann slept well last night. Shortly after noon, before she ate lunch (we watched a movie this morning and she ate an entire box of Raisinets), she simply could stay awake no longer.  She has been asleep for over an hour.  The norm is that she will sleep at least two hours.  It will be interesting to see how the night goes.

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Her head is hanging over the side of the transfer chair resting on the table next to it.  I suggested that she go to bed, but she insisted on staying there for another half hour.  That half hour will be up in a few minutes.  I wlll take a break and get her into bed in a moment.

After a restless beginning last night, sleep finally came and stuck around.  There were only a few commode trips after she finally settled.  She chose to sleep in until about 9:45am.  That rest seemed to help her alertness and responsiveness.  She has often put her head down on the table today.  I think the restless nights and early mornings have finally caught up with her.

I am heading off to get her to bed now.

She is in bed and already appears to be asleep.  It is too early to tell, but I certainly hope she sleeps well.  She needs the rest.

When the phone rang this morning it was the call I was expecting from the Cardiologist’s Nurse.  She had in hand the reports from the echocardiogram, the carotid sonogram and her blood work.

The call was another encounter with realities that are not visible.  Probably the most serious concern is the increase in the severity of her Pulmonary Hypertension.  That is the disease that took the lives of those who had taken the diet medication called Phen-Fen (sometimes designated in reverse, Fen-Phen).  Pulmonary Hypertension has been a part of the array of Mary Ann’s diseases for the last two to three years.  It is a funcion of the high blood pressure, which is, of course, raised by the Midodrine.  Any treatment would involve medications to reduce her blood pressure, bringing on the return and probably increasing the frequency of the fainting spells.

As last summer’s posts reveal, the fainting spells lower dramatically our ability to function.  Gratefully, both Mary Ann’s Cardiologist and her Neurologist understand the dilemma well and respect our decisions on how to proceed.

As I mentioned a number of posts back when reflecting on the report we had received on her blood work, her kidney function also has declined in the last six months.  She is now only one point away from Stage 4 (of 5 stages) of Chronic Kidney Disease.  A couple of years ago, her Nephrologist agreed that any treatment would lower her blood pressure, creating the same problem as the treatment for the Pulmonary Hypertension.

The Cardiologist’s Nurse said that the lesion in her left Carotid is still not past the 50% mark, which is the point at which the need for surgery comes into play.  She mentioned that there is a build up on her right side also.  I don’t remember whether that has been mentioned before.

The Nurse confirmed that there is leakage in more than one heart valve, including the Mitrovalve.  That regurgitation seems to have worsened some, but the language of the tests was not clear on that issue.  At our last appointment with the Cardiologist six months ago, the leakage was not bad enough for the surgery option to be up for consideration. There are also enlarged chambers in the heart, especially the left Atrium.  That problem has worsened.

All of the above has been factored into our consciousness at some point already in the past.  Hearing the results of the tests bring it all to the surface.  My questions always probe the rate of change.  This set of test results seem to indicate a more pronounced decline that in the past.

I plan to fax the Neurologist to probe further any treatment options for the fainting that might not raise the blood pressure.  At one point he mentioned an off label use of a drug called Mestinon.  The Cardiologist was unfamiliar with it and unwilling to prescribe it at that point.  I may try to get them to talk with one another about that or other options.  Getting doctors to talk with one another is not always an easy thing to accomplish.  They are both good doctors — maybe it can happen.

On the matter of the quality of life and the health of this Caregiver, the power of the Alien possession is now getting scary.  This is the Alien from planet Pedometer Prime who, as in the movie the Body Snatchers, is trying to change me into some sort of walking, exercising pawn.  This will frighten you.  Mary Ann and I made an afternoon run to the store for something.  Afterward, I offered to get some ice cream.  We went to Sheridan’s Frozen Custard for a what they call a concrete.  The one of choice is made with chocolate frozen custard with pecans mixed in.

Here is the terrifying development.  As we approached Sheridan’s, the Alien simply took possession and overpowered my will to eat ice cream.  Those of you who know me well (or have been following this blog) understand just how horrible this was.  I got Mary Ann a concrete as described.  Then the Alien took over the car and drove it to Cedarcrest where I walked the path while Mary Ann ate her treat.  It is a miracle we made it safely.  I certainly had no control over that car or, at the very least, we would have veered left at 17th and headed for Maggie Moo’s.

If that is not horrifying enough, the Alien had already forced me out to walk in the neighborhood early (for me) this morning while Mary Ann slept.  Keep alert, you never know when one of those Aliens will try to take you over too!!

By the way, Mary Ann actually said she liked what I made for supper tonight.  There were a couple of pork chops in the fridge recently thawed and needing to be cooked.  We had some red potatoes, onions and fresh broccoli in the there also.  I cut up the potatoes and veggies and put them on a foil covered cooking sheet (I hate cleaning pans).  We had some Hendrickson’s dressing and marinade that we have used in the past and liked.  I tossed the veggies in it.  Then to make the food preparation easier, I put the pork chops in a baking dish and covered them with the same marinade.  Both dishes went in the oven (375) for almost an hour.  I really liked the meal, but then I like everything.  Mary Ann only ate the meat, but volunteered at one point that it was good.  There is such a feeling of victory when something has passed muster with those finicky taste buds!

Just in case the Alien attacks again in the morning, I had better settle in for the night and get some rest.

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I think not!  We made it through today, but it took much coaxing and insisting and endless activity. She did not sleep very well again last night.  There were about as many trips to the commode, changes in position, drinks of water as have been so for the last few nights.  She was up at 7am, laid back down while I showered and got up for the day immediately thereafter.

I got her hair washed, got her dressed and delivered her to the circle meeting well before it was time to begin.  On the way home after the meeting, I suggested getting a movie or two for the late afternoon or evening to keep her awake.  When we got home she wanted to nap.  Since it was lunch time, I was able to keep her up for that.  Then she wanted me to leave her home while I took the car in for an oil change.  I thought about doing so, but since she was still up we just got in the car and headed to the Honda place.

When we got home after that, the television kept her attention for a while.  We ate supper,  watched one of the movies, and now she has just gone to bed.  My goal has been to keep her up during the day until finally she will sleep soundly through the night (with just a few commode trips) and we can return to a more manageable sleep pattern leaving both of us better rested and reducing the hallucinations.

Colleen commented on last night’s post: “Your comment about sleep reminded me of children.  The more tired they are, the more hyper they get, and the less likely they are to sleep.”  Before I read that comment, I had decided that tomorrow, if she wants to nap, I will not try to keep her up and busy, but just let her sleep.  Colleen’s observation may very well explain what is happening.  Keeping her up may actually be making it harder for her to sleep through the night. It is far too soon to determine if this will be a sleepless night or a sleep-filled night.

By the way, supper tonight was a treat for both of us, even though I did the cooking.  It was a meal simple enough even for me to prepare. When Edie came to stay with Mary Ann on Sunday (providing a meal, as she always does), she mentioned that they had just picked many green tomatoes.  We sent with her Mary Ann’s Mom’s recipe for green tomato relish.  I mentioned that it made the best glaze for a ham known to humankind.

Guess what was delivered to our house last evening while I was at the local Audubon Society presentation?  There were a couple of jars of freshly made green tomato relish and a huge slice of ham about an inch thick, ready to be cooked.  I wrapped a couple of sweet potatoes in foil and baked them until they were soft and moist, ready for the butter and brown sugar, spread the relish on the ham and broiled it (per instructions on the wrapper), opened and heated a can of peas, and the feast began!  The only moment of concern came when the relish under the broiler began to smoke.  I had visions of alarms sounding and fire trucks gathering.  Gratefully, the newly cleaned smoke detector was no longer too sensitive [see earlier post].

The movie we rented was The Soloist.  It was is engaging account of someone who managed against seemingly insurmountable odds to make music.  While our situation is far less dramatic and hardly compares to what the character in this true story encountered and, apparently, still does, the movie encourages the idea of living meaningfully, no matter what.  That is precisely the goal toward which we are drawn.

On that note, the Alien presence from planet Pedometer Prime had its way with me again.  I walked once outside at Cedarcrest and once in the mall while Mary Ann was at her Circle meeting.  Then came a powerful attack by the Alien.  Before it was over, I committed to a five week exercise and weight reduction program at Rebound Physical Therapy.  This lack of sleep must be getting to me also.  My resistance is down.  There is confusion from synapses that have not had time to connect as they do during that deep sleep that is so important to us.  Have I finally simply gone completely mad!!

One last note:  She has already been up for a couple of drinks of water, saltine crackers and a snack-sized container of applesauce.  Is it possible that she can have still another restless night?  The answer to that question will come soon enough.

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.

The Domino Effect is just beginning to lean away from the good days we have been having.  Last night Mary Ann did not sleep as well as she has the last ten days or so.  Yesterday morning the signs were there when she got up very early.  She had had a little trouble getting to sleep that night.

Our lunch out with a friend and the trip to check out the birds at a lake in a nearby town kept Mary Ann awake through the entire afternoon.  She had not napped in the morning.  I have mentioned before that while common sense would suggest that being up all day would result in sleeping better at night, with this version of Dementia with Lewy Bodies (Parkinson’s Disease Dementia) common sense is pretty much irrelevant.

Last night she also had some trouble getting to sleep.  There were more trips to the commode, and restless times, especially in the very early morning hours.  This morning she got up at about 6:45am and stayed up.

The hallucinations have had a pretty steady presence today.  While I haven’t really asked the rest of the group, I suspect that she either doesn’t have them or doesn’t reveal she is having them when she is at her Tuesday morning group.  The time I have been with her today, the hallucinations have been present and she has seemed out of touch, having lost the mental sharpness of the last week or so.

I was determined to keep her up today in hopes that sleep would be better tonight — hoping that the common sense approach might actually work this time.  I think it was our Daughter, Lisa, who said she thought we might enjoy the children’s movie “Up.”  Mary Ann had mentioned that as one she would like to see.  So, off we went to see to the $2 theater to see “Up.”

It was not what Mary Ann expected.  I am not sure what she had understood it to be like, but I don’t think she realized that it was an animated feature.  Oddly, we were not the only adults there without children or grandchildren.  It seemed to me to be a movie that might scare or be too sad in places for little children.  The movie was well done — Pixar alwsys seems to do creative animation.

She went to bed about an hour ago and does not seem yet to be completely settled.  I hope by being up all day today, we have kept the cycle of daytime sleeping and night time waking from getting a strong foothold.

She will be up early tomorrow so that I can get her ready for a Circle meeting at church.  Our bath aid has an in-service meeting and can’t come in the morning, and there is no Volunteer able to come.

I opted out of the Spiritual Formation group that meets every Wednesday morning here so that I would have time to help her with the morning prep.  My hope is that in the future, I will be able to manage both the group and getting her to the Circle meeting.  The Spiritual Formation group has come to be an important element in process of maintaining equilibrium.  This shift in the direction of the Domino Effect is a reminder that no amount of will power or commitment or planning will change the harsh reality that we are on a roller coaster with no controls to which we have access.  We can only react and make the best of whatever comes.

On that note, I did manage to get in a walk early this morning while Mary Ann sat watching television. I got in a second one while she was at her group.  This evening, there was a Volunteer wtih Mary Ann.  For the first time ever, I attended a local Audubon Society presentation.  An hour long video of birds and their songs was a wonderful treat.  The videographer was there to comment and answer questions.

Well, tomorrow is garbage day, so I had better get the garbage out, and I need to be up early to get MA ready for her meeting.  Here is hoping there will be some sleeping 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.

Danger! Danger!  Alien attacks again.  This Alien presence from planet Pedometer Prime has had his way with me again.  I was out and walking some time before 7:30am.  I had no idea there was a 7am on Monday.  I didn’t think they started measuring time until at least 9am.

The Alien and Mary Ann were in collusion.  As suspected, sleep did not go quite as well last night after a daytime nap yesterday and earlier to bed than usual.  The consequence was that she woke up at 6:45am in need of food and ready to get up.  Do you see how this played into the Alien’s hands?  After eating a single serving snack of apple sauce, she was willing to lie down again while I went out to walk for twenty minutes or so.  It seemed best not to start meds too early, since the two hour increments of medicine would end to early in the afternoon.  I put the Lifeline pendant around her neck, got water for her, the television remote for the bedroom TV and headed out.

Now, of course, I am feeling energized and positive.  You see how this Alien presence weaves his subversive plot?  Here I am writing this post and, again, it is morning — Monday morning!  I guess to be honest for those of us who are retired, there isn’t a Monday.  In fact we bought a clock from Radio Shack that shows the day of the week so that we would know what day we are in.

As I thought about Mary Ann’s increased ability to walk and the better nights, the domino effect popped into my mind.  The better nights have encouraged a change in my pattern of activity.  It seems more possible to do an exercise walk.  I am more rested and, as a result, more willing to get up in the morning to get in the walk. The walk perks up my metabolism, providing the stamina to write the post earlier in the day.

In addition, by getting up earlier, I am more ready and able to get to bed earlier.  Since I am writing the post earlier in the day, I can use the time in the evening after Mary Ann goes to bed for listening to music, or engaging in a Taizé devotion, following a reading by Fr. Ed Hayes.  The latest readings have come from his book, Prayers for a Planetary Pilgrim.

All of the above has been about me, the Caregiver.  For Mary Ann, the good news is that she has seen little of Grumpy Caregiver and more of the patient and helpful Caregiver.  My confidence in her ability to walk has freed her from my constant presence, in her face, asking her to sit back down.  She has fallen on occasion, but still not often by comparison to the past. My confidence in her ability to walk has given me the feeling of being untethered.  That has felt  remarkably freeing.

It fascinates me just how interrelated all these circumstances are.  One domino falls, touches the next.  That one hits another, that one bumps one more.  Sometimes one small change can grow into something far more substantial.

I have no illusions.  Just as the dominoes can fall for good, they can fall for bad.  The hallucinations have begun to return.  Yesterday morning, there was a Raccoon in her bed.  When we drove into the garage after church last evening, Mary Ann in a matter of fact tone, noted that they hadn’t thrown away the quills.  I asked to what she was referring.  She answered, the Porcupine quills.  She saw them distinctly.  When I got out of the car, turned on the lights in the garage and helped her out of the car, she saw that they were gone.  She was, however sure there were some in the house.  When we got in, she went into the bedroom and looked around.  She didn’t comment further on the matter. Hallucinations, of course, can interfere with her sleep and keep her up for hours.

Since she got up early this morning, she may get tired and need a nap.  A nap might impact her ability to sleep.  The domino effect could take us back to more troublesome times.

To try to avoid that path, we have made a commitment to pick up a friend, head out for lunch and a ride.  My hope is that we can keep active until Oprah.  Once that time comes, she generally stays awake until bedtime.

We live on a very narrow margin of functionality.  We can do very well one hour or day or week, and very badly just as easily.  Right now we are on a side of that margin that has been very enjoyable.  Here is hoping for more time on this side!

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.

The Alien from Pedometer Prime chooses bribery to seek a permanent home!  Will he succeed?

[If you have not read yesterday’s post, what I just wrote will make no sense.]

This was a very cold and gray morning.  A blustery breeze from the north made it feel even colder when out walking.  Since there was a Volunteer this morning, I was able to go out to the lake where I usually sit in the car, read, listen to music and watch for birds and any other wildlife that may appear.

My regular routine includes moving to the Delaware Marsh below the dam to take a short walk with binoculars handy.  Today, the Alien overpowered my resolve to expend as little energy as possible and set me off at a brisk pace for a long walk around the marsh.

It is an insidious plot.  I started walking feeling as gray as the day, shuddering at every gust of the cold wind and rattle of the leaves on the Cottonwood trees.  The cold kept me walking as fast as I could on the rough ground.  Occasionally I heard or saw evidence of a few birds, but most of them had the sense to stay sheltered from the cold.

As I walked the Alien began to tempt me to let him stay in his new home.  I began to warm as the Alien slowly turned up the thermostat on my body’s furnace.  I walked past the spot my short walks had taken me in the past.  I discovered markers for a path that took me into new areas of trees and fields, marshland and ponds.  The cold air changed from an irritation to be endured to a fresh and inviting Siren.

Even the gray sky ceased to be a depressing presence and became a calming backdrop for trees and weeds and wildflowers.  The Alien was enticing me to embrace his presence rather than send him back to Pedometer Prime.  I made full circle around the Marsh, having had no idea prior to this morning that there was a path all the way around it.  I came around the last turn to an information sign posted on a stand that said I had just walked two miles! That evil and subversive Alien!!!

At the lake I had watched many thousands of gulls resting on the water and flying through the air.  On the drive back across the dam I passed one hawk sitting on a post almost within reach as I went by.   I spotted another hawk and stopped the car on the dam to watch it as it remained absolutely stationary in mid-air, only occasionally moving it wings to reposition itself against the breeze.  I watched that seemingly impossible aerial display for many minutes.  As I left the dam area and traveled a road among the trees to get back to the highway, a couple of deer with very dark coats of hair were standing on either side of the road.

When I arrived back home, there was a hot meal waiting.  As often happens on a Sunday morning (we attend the evening worship service), a Volunteer had come to stay with Mary Ann.  As always, Edie brought with her the fixings for a full, nourishing and tasty meal; she prepared it and set it out on the table for us. There is enough to allow at least one more meal.  No cooking tomorrow!

Now to the title of this post.  I just could not keep Mary Ann awake any longer.  It was tough to keep her up yesterday, but we just kept going, a trip to Sam’s Club at midday, a noon meal (thanks, Lisa, for the pizza muffins), a trip to the regular grocery store, and supper (steak and twice baked potatoes from Omaha Steaks — I hate cleaning the George Foreman grill).

Now with both of us sated after a hot meal, with football on the television, I simply could not convince her to stay out in the living room in her chair.  She is more of a professional football fan than am I.   The Kansas City Chiefs were playing (they just lost in overtime — no surprise they lost, just that they managed to take it to overtime).  The only team that would capture her interest more would be Da Bears.  I cajoled and encouraged, but she was clearly wiped out.  She is still in recuperation mode from the long trip from which we returned a couple of days ago.

The question remains: Will she sleep tonight?  After ten good nights in a row, none following a daytime nap, tonight seems likely to break the string.  There has not been a clear pattern correlating naps and restless nights, but common sense suggests there must be some correlation.  Here is hoping that in this case common sense does not prevail.

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.

Warning!! The return of the body snatchers has begun!  Aliens from a newly discovered hidden planet just outside the orbit of Pluto, a planet named Pedometer Prime, have snatched both Mary Ann and me and replaced us each with one of their own, beginning the invasion.

Actually, the invasion has already begun. You can see them everywhere.  They are walking the sidewalks with a telltale look of superiority on their faces that seems to say, “I am walking and you are not!”  They threaten to take over by the sheer weight of their numbers as they outlive the rest of us.

My only hope is that a rainy day will come, breaking the power of the alien with which I am possessed.  However, I have heard that some of the aliens just move indoors to malls and gyms when it rains.  Frightening!!!

Actually, I am virtually immune to a long term stay of my resident alien, since the power of my laziness and lack of discipline is likely to drive him out soon, probably within hours.

Yes, it is true.  Yesterday when we were returning from the library and the requisite trip to G’s for Turtle Sundaes, I asked Mary Ann if she would be okay sitting in the car at Cedarcrest (a park that surrounds and includes the Governor’s Mansion) while I walked for bit.  There are many paths including one that is fairly level, in an open area including some picturesque ponds, a path about a mile in length.

The day was spectacular.  It was cool and crisp and clear.  The sky was the crystal blue of the approaching winter.  There was much pleasure just soaking in the beauty of the fall colors and the scents of Autumn.  I suspect there may have been a trickle of endorphens assisting since that comparatively short walk got this little exercise averse body pumping blood to every extremity including my brain.

If that is not enough — and this is what assured me of the alien presence — I got up this morning, earlier than usual, put the Lifeline around Mary Ann’s neck so that it would be within reach as she remained in bed, layered a shirt and jacket for the thirty degree morning and walked a little over a mile in the neighborhood.  I hope this is not a sign of some cataclysmic event bringing all life as we know it to an end.  Let’s hope not.

And now, here I sit at the computer writing this post and it is still morning!!!  Having spent a week in another time zone, our body clocks shifted just enough to make it possible to get up and hour earlier without so much effort.  Another odd but pleasing quirk is that Mary Ann has been sleeping well at night.  Understand for us a good night’s sleep still includes a couple of trips during the night to the commode and a couple more very early in the morning.  Mary Ann slept well every night during our trip and has slept well the last two nights.  That could, of course, change tonight.  If it does, it does.  If the good nights continue, we will just enjoy them.

Added hours in the morning create both a challenge and an opportunity to get out of the house a little more.  I have inferred from Mary Ann’s sleeping so well on the trip that staying awake all day does help the nights go better.  That, of course, seems obvious, but in the past staying up all day has not necessarily correlated to sleeping well at night.

Well, we had better get out of the house before we return to our usual vegetative state.

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.

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. [http://www.lookoutpointinn.com/]  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.

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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.