October 2009

Here we go again.  Tim says it is not Belle and the twins who have returned.  It is a new family that has moved in.  Tim’s conclusion is based on two things: One is that they could not have made it back from so far and crossed the Interstate to do it.  The second reason is that his reputation as a trapper extraordinaire would be injured if it were.

As expected, the return of the raccoons and the conversation about it has sparked Mary Ann’s expectations for seeing them in the bedroom at night.  When we arrived at the bed in preparation for lying down, she looked down to the floor along side the bed to see if she could see little feet — raccoon feet.

Assuming that we accomplish the goal, I can only hope that the trapping and relocating of this little raccoon family will remove that hallucination from the library. After we completed the task of trapping and relocating five raccoons a few weeks ago, while the hallucinations didn’t cease, there were fewer including raccoons.

Today continued to be a pretty good day.  Mary Ann did well at her morning Bible study group.  She spent much of the afternoon with a friend while I ran some errands.  They were on the deck for an hour or so on this beautiful day — something Mary Ann rarely does.  This evening another Volunteer/Friend spent a couple of hours with her.  It is especially satisfying to me when Mary Ann has had a good day and time with others.  It is tough for her to be stuck with me for long periods of time without a break.  Of course, I also appreciate the breaks.  Having time apart improves the quality of our time together.

By the way, that infernal Alien from planet Pedometer Prime that is trying to take over my body managed to send me outside to walk three times today!  This is crazy!  The little device he manipulated me into attaching to my belt says I took 17,581 steps today.  On top of that, the walks brought great pleasure since the day was spectacular.  What a devious plot this Alien is perpetrating.

Gratefully, so far I have successfully frustrated his consumption of my flesh.  By eating large quantities of meat and potatoes, chips, and sandwiches and anything else I can lay my hands on, I have reclaimed the a pound or two of the flesh that he had consumed in the last week or two.  Whew!  That was a scare.

The assessment of the condition of my body in preparation for the exercise and weight control program this Alien presence forced me to join was scheduled for tomorrow.  Maybe the power of the Alien is weakening.  The appointment was written down for the wrong day and had to be rescheduled to a day a couple of weeks from now.  Maybe I will be released from this evil possession before then.

I will report the progress on this round of the raccoon relocation project as soon as there is some.

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The weather was predicted to be spectacular today.  I wanted fresh cider and cider doughnuts from the Louisburg Cider Mill.  The drive is a wonderful one, lots of country scenery.  I warned Mary Ann early today of my plan.  She said okay.  Understand the Cider Mill is an hour and a half from our house.  I had in my mind that it was only an hour.

The plan was realized and we spent three hours on the road for a couple of cider doughnuts and a cup of cider.  We did bring back a dozen apples, a jug of fresh cider and some licorice, one of Mary Ann’s favorites.

Along the way, we got to spend a little time at a family farm tended by Doug and Marikay.  What a beautiful spot, fields, woods, a pond, and a newly built little cottage.

Saturday we had gotten to spend some time with our Son Micah, Daughter-in-Law Rebecca and Granddaughter Chloe, who live about an hour away in the Kansas City area.  We went to church with them and the ate with Micah and Chloe while Becky enjoyed time with a friend.

That quality time was followed by my Sunday morning trip to the Lake for a long walk on a newly discovered pathway, providing sights and sounds, entertaining descriptions posted on periodic stands, along with great weather.  Mary Ann enjoyed time with a Volunteer/Friend, who washed her hair and treated her nails, providing some refreshing personal care.

After a little football, we were treated to some creative and engaging arrangements of choral music and piano music by a talented composter/arranger named John Leavitt.  I had had the joy of getting to know him through an informal interview when the congregation I served was looking for a full time musician.  It was a pleasure to attend the concert/hymn sing at a local parish.  John has a remarkable ability to take something that could sound trite and tiresome from so much use and make it new and fresh.

The scary moment came just before we were to head out the door and leave for the cider mill.  We were returning from the pre-trip bathroom visit.  She had shifted into one of her eyes-closed modes as I walked her into the living room.  She was not moving well, so I asked her to stand still for a moment while I went the six feet or so to get the transfer chair and pull it beside her.

I saw it happening, but I couldn’t reach her to stop it.  The scene moved almost in slow motion as she move out of balance toward the end table, shifted direction, guided by the front of the couch and her head slammed against the back of an old wooden mission rocker as she cumpled to the floor.

For a moment, I thought this was the dreaded fall that would take her to the hospital, maybe producing a more damaging stroke than the last one.  I was sure, at the very least there would be bleeding that could not be stopped due to the regimen of Plavix and Aspirin.

I held her head and felt the knot.  There was no bleeding.  As I held her, I asked if it hurt terribly.  I was most interested in hearing if she could respond coherently.  To give her the words with which to respond, I asked the usual, “on a scale of one to ten” question.  At that point she said it was a nine.

I was just glad to hear her respond.  I held her for a while, then asked if she wanted a pillow so that she could rest on the floor before getting up.  She said she did.  While the norm would be to try to have a person stay awake after a head trauma, she was talking very coherently.  She had already, before she fell, switched into tired mode — usually followed by a nap.  I had asked her then if she wanted to nap, but she still wanted to go.  Now, as she lay on the floor, I thought she would need to rest for a while.  Already before she started her nap, she said that her head did not hurt any more.

The usual pattern is for her to sleep two hours when need for a nap hits.  This time she rested for less than an hour.  When I got her up from the floor, she decided that she still wanted to go.  That is when we left for the cider mill.

I have said it before.  I will say it again.  This woman is made of iron!  Twenty-two years of Parkinson’s, multiple heart attacks with two of the three main arteries on her heart completely blocked, a life-threatening bout of pneumonia, a stroke, the onset of Parkinson’s Disease Dementia (a Dementia with Lewy Bodies), flirting with stage 4 (of 5) Chronic Kidney disease, leaking heart valves, Pulmonary Hypertension, too many falls to count, and off we go on a three hour trip to the Cider Mill for a cup of cider and some cider doughnuts.

She will probably outlast me and end up dancing on my grave.  Yes, she still dances.

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There they were, Belle and the Twins, Tommy and Sally.  Tommy and Sally have grown much larger, but are still young.  Probably teens, judging from Tommy’s belligerent attitude.  He takes after Gus, his Dad.  Gus snapped at Belle one evening while they were on a date, having dinner on our deck.  Tommy snappped at Sally when the two of them were both eating at the sunflower seen platter last night.

While they were not ready to leave, and responding slowly to my attempt at shooing them off the deck, they did finally leave.  If Gus had been there, I would have stayed inside.

We thought the Raccoon Relocation program had taken them far enough that they wouldn’t find their way back.  So much for that idea.  For now, I am back to bringing in the feeders at night.  That wreaks havoc with the birds early breakfast call.

I hesitated to mention their return in Mary Ann’s hearing, since their presence outside is likely to trigger more hallucinations of them in bed with her.  She explained to a friend that they can flatten themselves out and crawl under the door.  I did mention them when having dinner this evening with our Son, Micah, and Granddaughter, Chloe.  Before doing so, I thought it through and concluded that Mary Ann’s sense of security would be lessened if I tried to mislead her, or whisper behind her back to others rather than just being open about it. There will be some sort of visible activity brought about by their presence anyway — as in starting again bringing feeders in at night and putting them out in the morning.  I am not sure about the possibility of trying to trap them and relocate them again.  They may all be too smart for the trap now.

I have tried to keep everything above board and as clear to Mary Ann as possible.  I use the word, dementia, in front of her rather than only using it secretly.  I would rather deal with the consequences of the truth and how it feels to both of us, whether we happen to like that truth or not, than to get wound into some sort of complex fabrication, trying to hide the truth, worrying about the chance of it slipping out.

The time has slipped away and sleep is anxious to have its way with me.  Enough for now.

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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.

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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.

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