September 2009


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

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

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

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

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

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

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

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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.

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.

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.

Last night was pretty tough — up and down all night long, then up this morning at 6:45am.  The same is happening as I write this and has been going on for two or three hours.  There is no point in my trying to head in to bed yet since the activity is constant at the moment.  She has been climbing in and out of bed for no apparent reason with only minutes in between. 

While, again, it is a function of the disease, it is no less frustrating.  The time that I have generally claimed as my own in these late hours after Mary Ann goes to bed is coming to no longer be my time.  Tonight I set upon having some spiritual renewal time.  There is a podcast of  the Saturday worship service at the Taize Community in France.  The music is the sort that draws the participant in with a beautiful simplicity.  The readings are done in at least three, often more, languages.   There is a calm and peace that seems to include in community people like me, listening from thousands of miles away. 

I had first read a weekly poetic devotion by Fr. Ed Hayes, whose writings have had much impact on my personal Spiritual journey.  The reading suggested lighting a candle.  I haven’t done it in a very long time, but I pulled out a votive candle, placed in on the worship center, a cabinet built precisely for that purpose, with stained glass inserts in the doors.  I lighted another candle in a tall walnut candle stand made by my Dad, many decades ago.  Next to that candle stands the Shepherd’s Staff made by a parishioner and given to me at my retirement, a symbol of my forty years of ministry. 

A small iron Celtic Cross stands on the cabinet next to the votive candle.  Joining the Cross and candle on the worship center is a large ceramic bowl with lettering and symbols painted on by the other Staff members and again, given at my retirement.  The words are the summary of the congregation’s sense of purpose, “Grow in Faith.  Share Christ’s Love.”  The bowl is a symbol of Baptism, in our tradition, understood to be that first encounter with the Grace of God, an act of unconditional love by God, initiating relationship. 

One other item on that worship center is a simple memento of a long-standing friendship with a small group of parishioners from the first parish  I served as pastor.  It is a small beveled glass case with found items, pine cones, dried weeds, parts of plants, stones picked up on a trip together to Alaska many years ago.

With the candles and the light from the computer screen only,  I began the Taize worship.  As I settled in enjoying the sensations that come with such an experience, the monitor screen that keeps me aware of what Mary Ann is doing as I sit here, revealed the activity.  Since she is at risk of falling when she gets up, needs help to use the commode, to manage the cup of ice water next to her bed, to turn over in bed, her activity demands my participation. 

I have stopped and started the worship a number of times, getting more frustrated each time, resenting the loss of the freedom to enjoy the experience.  There is a odd sort of irony, that the very thing that helps me maintain a healthy equilibrium in caring for Mary Ann, is doing the opposite tonight. 

As the Neurologist allowed, I have just this evening increased the dosage of Seroquel, which is the medicine that both reduces the hallucinations and helps with sleep.  The last increase was not enough.  It is too soon to assess the effectiveness of this increase.  Certainly, the hallucinations have not decreased yet, they continue to be on the increase.  Just moments ago she told me to be careful of the little girl when I was adjusting her sheet.  This morning when she first got to the table for pills and breakfast, as soon as I turned on the light, she tried to show me the blood on her hands.  I think she believed it to be from the raccoons or whatever biting her.  There was, of course, no blood. 

Last night’s post mentioned my need for better choices in the area of diet and exercise for the sake of this Caregiver staying healthy.  Last night, today and tonight have revealed again the difficulty of following through with such plans.  When there are nights like these that string together, it is just survival mode.   A steady pattern of changed behavior seems completely out of reach.   I am still reading the book offering helps for improving the diet part of the problem.  Maybe some changes can be folded into our days. 

As Scarlett would say, “I’ll think about that tomorrow.”

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 is cute as ever!  We were dressed to the 9’s (whatever that means) for the church’s new directory pictures.  My contribution was to wash Mary Ann’s hair: the rest is in her genes. That combined with her ability to stop eating when she is full, has kept her slender and very nice looking.  As is apparent in the picture, I married up. 

I, however, have combined genes (Dad) and a seemingly uncontrollable appetite (Mom) to produce enough stored energy to last many weeks were I to end up on a desert island with no food.  It has, of course, gathered in the worst place for increasing the likelihood of numbers of diseases of the aging.  What is in my favor is a family history that for the most part does not include Cancer, Heart Disease or other life threatening diseases.  Most everyone in my immediate family has died of old age, or is still living.

That family history does not impress my Cardiologist.  Nor does it help me tie my shoes, or avoid the endless shrinking of clothing in my closet.  My shoes still fit!

On the spur of the moment, I went to a local Physical Therapy Center for a free consultation introducing a weight control program including both dietary counseling and an exercise program.  I liked everything about it (except the diet and exercise parts).  There was even the possibility of something that might benefit Mary Ann while I was doing the exercise program at the facility.  Then came the “other shoe” as they say.  The numbers took my breath away.

I need to stay healthy since I am not the only one who depends on my health and well being.  My health is more important than having a bunch of money in the bank.  One problem is that the bunch we have is of a size that a great deal of care needs to be taken when spending it.

There is a simile that I find very useful and use often.  Some things are like putting out a match with a fire hose.  I am not sure the amount I need to lose is worth that much money.  I would be right in the middle of normal on the weight chart if I were only six inches taller.

The truth is, the chart I am looking at puts me just past the line between overweight and obese — just barely, but obese.  Charts vary, and in some I am not categorized quite so harshly.  Nonetheless, clearly there is need for better habits and a lowered risk of problems emerging.

One of Mary Ann’s Volunteers has access to lots of health information, and has found a book that offers one approach to developing healthier habits.  She brought the book over early this evening.  The Cardiologist’s nurse had given me a copy of my blood work with the instruction to double the cholesterol lowering medication I am taking, Today, I received another copy in the mail, this time from our GP who got the same blood work report.  Today’s copy included a handwritten note, “LDL is too hight, needs to be around 100; work with exercise and diet.”  Of course in the last couple of weeks more studies have been published suggesting that belly fat increases the likelihood of getting Cancer, Heart Disease, Dementia, and Type II Diabetes.

A contributing factor to all of the above diseases is serving as a Caregiver.  The statistics are not good for those of us in a Caregiving role.  There are some things that cannot be changed.  I suppose common sense suggests working on changing those things that can affected by the choices made.

All of this comes after receiving the cooler from Omaha Steaks yesterday (a great sale), and enjoying the buy one, get one free Blizzard at Dairy Queen this afternoon (it was the annual anniversary gift for signing up online to join the Blizzard Club).

Rest assured, if there is any change in diet resulting from all this, or any exercise added into my daily activities, there will be whining in posts yet to be written.  Consider this fair warning! 

By the way, it feels good to have our Christmas shopping done for our children.  They will receive fresh new pictures of their parents to replace the old ones in the shrine.  We are so thoughtful.

It appears that tonight will be another tough one.  The raccoons are back in the bedroom.  Mary Ann wants me to call Animal Control.  I hope she can settle soon.  We will see what the night brings.

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

Could our timing have been worse??  I think not.  We rolled up the sidewalk just in time for the pastor to open the doors for the pallbearers, readying themselves to carry the casket to the coach. The family was lining up behind the casket.

We just scooted in the open door, past the pall bearers and the family to the other side of the lobby as the funeral home staff ushered out of the Nave of the church those who had come to attend the funeral.  It was the epitome of bad manners.  Sometimes it is not better late than never!

Actually, I pretty much expected that we would embarrass ourselves when we left the house.  The funeral was at 10am.  We left the house at 10:20am with about a ten minute drive to church, depending on the stoplights.  Mary Ann had to take some medicine before we headed toward the door.

The decision was either to embarrass ourselves by arriving at the end of the funeral, or not going.  Mary Ann’s bath aide has a schedule of clients to see each day she works.  It is not a simple matter to just ask that she come earlier, throwing all her other clients off their schedules.

When there is a chronic illness like Parkinson’s that has entered the family, there are consequences.  Among them is the loss of the ability to make and keep plans, to accommodate to external demands.  The disease often rules the schedule.

Having served as Pastor of the congregation for over twelve years, I had known the deceased and family for a long time.  There had been some very challenging times in the family’s story during those years.  I was involved in that story.  This was a chance to see some of the family who had come from very far away.  I could have written a note explaining why we couldn’t make the funeral.  That just did not seem okay to me.  Charlotte had served as a Volunteer with Mary Ann, I had confirmed some of the grandchildren.  I had done a couple of weddings for the family.  The connection seemed too strong to accept that we couldn’t get to the funeral.

I decided that in spite of behaving badly by coming in at the end of the funeral, and the embarrassment that would come with it (embarrassment is a most hated enemy to me), I would not give up the chance to have a few minutes with members of the family.

We had had some practice with this sort of embarrassment when we decided some time ago to go to a morning worship service instead of the evening service. That Sunday morning we arrive in plenty of time to attend the 11:30am service.  The service, of course, is and always has been at 11am.  We had to roll past a group of folks standing on the sidewalk by the door to church.  They had gone to an earlier service and were just socializing as they were heading to the parking lot.  Again, I knew we would be late, but I wanted to hear a newly commissioned Deacon preach (he was great!).  We had a commitment that evening that would not allow us to attend the evening service.

Chronic illness has consequences in day to day life.  Sometimes embarrassment is one of them.  As I have mentioned before, eating in a restaurant often provides opportunity for embarrassment as food often ends up where it is not intended to go.  Using public bathrooms always provides opportunity for embarrassment as I have to find someone to watch the door of the women’s restroom while I help Mary Ann, fearing all the while that someone will come charging in, horrified to see a man in the women’s restroom.

One of my personal challenges is to refuse to give my hatred of being embarrassed the power to control our choices.  We need to be out with people.  One thing our circumstances have taught me is to be less judgmental of others.  Who knows what they are going through, when they do things that seem to be in bad taste or thoughtless or inappropriate? Who knows what they are going through?

Embarrassed?  Yes!  But we’ll live.

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.

Warm gel is a good thing when having an echo-cardiogram and a carotid sonogram.  Yesterday was Mary Ann’s every six month check of the lesion in one of her carotid arteries (the ones in the neck that supply the brain with blood), and her every six month check of her heart, the valves and general condition.

The tests happen so regularly since at some time, should the lesion in her carotid artery grow past a certain point, the question of surgery will come up.  She has already had one stroke, probably caused by bits of plaque sloughed off from that lesion.  The most we can hope for is very little change in how much of that artery is blocked.  I will admit that neither Mary Ann nor I am much interested in a major surgery.  We would certainly discuss the option.  I would not presume to know for sure what Mary Ann might want to do if surgery is suggested.  Her Mom had it when she was in her 80’s, and she did very well.

What the echocardiogram shows could have some impact on medications.  It was interesting to watch the med tech do the test.  She had a student with her.  She described what she was looking at to the student as she pulled up each view of Mary Ann’s heart.  I had a great view of the screen during the entire test.  It was helpful to me to hear her point out and name the parts of the heart on the screen.  Having watched the screen for the last few echo-cardiograms, I am getting fairly familiar with the images on the screen.  It helped this time to have a running commentary on what I was seeing.

What was especially interesting was a little mini-drama, as the med tech was describing what she was seeing to the student.  At one point there is color added to the screen.  The red indicates blood coming toward the probe, the blue indicates blood moving away from the probe.  When the med tech was checking the valves using the color mode, her voice lowered as she spoke to the student.  I inferred that the movement of the colors was indicating leaking valves and she did not want to break protocol by revealing that within Mary Ann’s and my hearing.  I had been quiet (unusual for me) until then.  I decided to relieve her distress by mentioning Mary Ann’s problem with leaking heart valves. The med tech’s response indicated my assessment of her reaction had been correct.  Up to this point, the leaking is not severe enough to warrant raising the surgery option.

Both Mary Ann and I had blood tests a week ago.  Her orders came from our GP (thyroid and cholesterol check), mine came from our Cardiologist (cholesterol).  Mary Ann is the one with problems, right?  Her numbers were great!  Mine produced a message from the Cardiologist to double the dosage on my cholesterol lowering med.  Mary Ann’s annoying ability to stop eating when she is full, as well as her distaste for leftovers and much of what I cook, seems to be serving her well in the blood chemistry department.  My inability to stop eating until everything is gone on my plate and all the containers on the table, does not serve me so well in the blood chemistry department.  I suspect a program of improved diet, exercise and weight reduction is in my future — perhaps I should have a snack and lie down until that thought passes.

We got a copy of the written results of our blood work yesterday after the tests were done.  Mary Ann’s results revealed the continuing reduction in her kidney function.  The surface of her kidneys has hardened due to decades of high blood pressure.  If you have read earlier posts about her struggle with Orthostatic Hypotension (low blood pressure when standing, producing fainting spells) you will catch the irony.  She is now taking medicine to raise her base blood pressure to reduce the problem of her BP lowering too much when she is standing and walking.  If I am reading the lab report correctly, she has just moved into stage three of five in her Chronic Kidney Disease. The good news is that we all have so much kidney capacity that it could lower to 30% of full functioning without becoming dangerous. When I include that sort of information, remember that I am not a doctor.  Don’t take my word for it. A few years ago a very candid Nephrologist told us that Mary Ann would likely die with Chronic Kidney Disease, not of it.  At that time we all agreed not to treat the kidney disease since the treatment would make the fainting worse by lowering her blood pressure.

As the tests were going on, I thought about how scary all the test results can be.  When we first were told about each of the problems, there was that feeling in the pit of the stomach that the end might be nearing.  After years of monitoring the results of the tests, it is just more information confirming what we already know.  Even if there is something new, Mary Ann has faced down so many medical problems for so many years, we just take it in stride.  Mary Ann could die in ten minutes, ten months, ten years, or more.  So could I.  Death lives just on the other side of life.  Coming to terms with that provides a sense of peace, and affirms the sweetness of the life we have at any given moment.  Our spiritual foundation steals from death its ultimate power to destroy.  Neither of us longs for it.  We both recognize the pain that is left to those we leave behind.  At the same time, we recognize our mortality and have learned to live with 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.

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