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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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!

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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!

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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.

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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 there was little sleeping, then there was a lot of sleeping.  Not only did she nap for over five and a half hours during the day yesterday, she went to bed earlier than usual, slept through the night, and was slow in getting up this morning.

The question in my mind this morning was, have we increased the Seroquel too much.  Will she now be sleepy all the time and move to a lower quality of life on account of it.  Is my decision to add another 25mg of Seroquel hurting Mary Ann?  When we saw the Neurologist last, he increased the dosage by 25mg and said that if the increase was not enough to deal with the hallucinationa and restlessness at night, I could raise the dosage another 25mg.  That is what I have done.

While I don’t yet know the answer to my question about whether or not the increase is too much, today she has stayed awake.  Tonight when I asked about it, she said she was tired all day.  Her tiredness could be the result of the Seroquel.

It is so very difficult to adjust the medicine to just the right amount, what the doctors call titrating the dosage.  The variables are many and complex.  Sometimes it takes a while for a change in dosage to have effect.  Different people don’t always react the same way.  Seroquel is a potent drug.  There are risks, serious risks.  Probably the most serious problem that can emerge is Neuroleptic Malignant Syndrome [NMS].  If I understand correctly, that problem very quickly can cause death.  It is an uncommon side effect of the drug, but nonetheless a risk.  Again, if I understand correctly (disclaimer: I am not a doctor), stopping Seroquel suddenly can also trigger serious problems.

Starting new meds, stopping meds, changing the dosage is like running through a grove of thornapple trees.  Someone might get hurt.  Mary Ann is always involved in the decision-making on the meds, but generally, she trusts my judgment on what she should take and when.  She is pill averse, so she takes as few as possible.  She will on occasion simply refuse to add more.  Most of the time she accepts what the Neurologist prescibes, and what I recommend.  That is not a responsibility that I relish, but, like it or not, it comes with the territory.

Caregivers often have a great deal of responsibility for how their Loved One does.  We are the ones who have a daily awareness of how things are going. Good doctors listen to us and take into consideration what we think is needed.  Again, that is a lot of responsibility to have.

I asked for help with Mary Ann’s (and my) sleepless nights and the disturbing hallucinations.  I asked.  The answer was to increase the Seroquel. I may have gotten more than I asked for.  This morning I was very concerned, actually, I was scared.  At the moment, since she was awake all day, I my concern has been mitigated a bit.  We will see how tonight goes.  The information on Seroquel suggests that the drowsiness that comes when it is first taken often diminishes.

What we both long for is for Mary Ann to be awake during the day, and asleep at night.  Is that too much to ask?  Probably, but we can hope.

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Then why don’t we act on the obvious solution and solve the problem!

She napped for over five and a half hours today.  She napped for over three and a half hours during the day yesterday.  I can’t remember how long she napped the day before that.  Isn’t it obvious?  Just keep her up during the day and she will sleep through the night.

I just read an article in the online newsletter from ScienceNews.  Apparently a recent study using rats associates sleep deprivation with an increased risk of experiencing Alzheimer’s Dementia.  The assumption was that the sleep problems were a result of the disease.  It now seems possible that they are part of the disease process itself. (Yes, I, too, wonder how a technician can determine if a rat has Alzheimer’s Dementia —  actually, I do know the answer to that, but I am not saying here — suffice it to say, once the information is obtained, the rat no longer needs his/her pension.)

Back to the solution.  Why not just keep her up all day?  I am sure that solution seems obvious.  If it is hard to keep a two-year-old awake when those eyes fall shut and that little body goes limp, if it is hard two get a two year old up early from a nap without a major meltdown, imagine trying to get a strong-willed, independent adult who has a right to make her own choices up from a nap when she wants and needs very much to continue sleeping.

I can remember a day some weeks ago when I managed to keep her up all day with trips here and there.  She was restless that night anyway, up and down for most of it.  On the other side of it, while things may change at any time, after having that more than five and a half hour nap today, she was tired and went to bed early this evening.  She has been sleeping soundly for the three and a half hours since then.

Obvious solutions don’t always work.  With that said, I admit that it would make sense to try to get her to sleep less during the day to increase the likelihood of sleeping soundly at night.  One of the struggles with being very assertive in waking her up is that when she is napping, I have time to myself.  I am able to concentrate on tasks and accomplish things that can’t be done when Mary Ann is awake, up and about.

Today was a spectacularly beautiful day, warm and breezy.  With the video monitor on the table next to me, I was able to sit on the deck and read, while enjoying weather, the waterfall, the birds (hummingbirds buzzing over me regularly).  I finished the book on weight control (The Volumetrics Eating Plan) with time left over for a snack of potato chips (just kidding).  I did try to get Mary Ann up a number of times after the first three of the five and a half hours, but she just couldn’t do it.  She had said she felt pretty bad when she laid down this morning — no wonder after two nights of almost no sleep.I knew she needed the rest.

I guess, if I appreciate the time the daytime napping gives me, I shouldn’t whine about the restless nights.  I concede the point.  The glitch is that I am not getting much sleep either.  I could try to nap whenever she naps.  That also makes sense.  Were I to do that, my every waking moment would be centered around her needs.  To survive and remain useful to Mary Ann, I need some time to myself when I am awake.

Sometimes obvious solutions don’t really work as well as logic would suggest they should.  I suspect that those looking in from the outside lose patience when obvious solutions are not used to solve the problem about which the Caregiver is complaining

As I was preparing to write this post, I thought about the legions of Caregivers out there.  First of all, every parent has experienced the challenges of caregiving, unless they have abandoned their responsibility to their child[ren].  Single parents, especially those with more than one child have challenges I can’t even begin to comprehend.  There are many who have responsibilities to their children (they never end, no matter how old the children become) and at the same time responsibilities in caring for their aging parents.  There are those who have severely troubled children, physically and/or mentally.  They struggle to care for them, some have to make tough choices demanding allowing others to do the care at a facility outfitted for that care, having around the clock staff to give that care.

I have the luxury of having only one person who needs my full time attention.  Gratefully, our children do not need our care.  In fact they are members of the sandwich generation, raising their children and concerned for our needs as well.

All in all, I guess I should stop whining.  I won’t, but I should.  I think those who are full time Caregivers need some whining time.  Blogging is great, since it creates the illusion that there are people listening.

Whether anyone is listening or not, it helps to talk about it.

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.