November 20, 2009

Update and Gifts of Daily Bread

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Noma called this morning and asked if she and Herb could bring over a couple of bottles of Herb’s home made wine.  For a number of years, Herb has provided home made wine for the Thanksgiving Communion services at the congregation from which I retired.  He makes very good tasting wine.  Herb and Noma also brought a little meatloaf that Noma had made, and some home made peanut brittle.

The week started with Jan bringing with her a very tasty Mexican chicken pie on Sunday when she came to spend time with Mary Ann.  Then early in the week Mary brought by a large container of soup made using the Olive Garden recipe for their Pasta E Fagioli.  Jeanne came over for a part of the day today and brought a Quiche from Copper Oven, along with a piece of pie from there for each of us.  Mary Ann’s pie was one of her absolute favorites, Lemon Meringue.  Tomorrow, Mary is going to bring us some pork loin and dressing.

So much of the time Mary Ann is forced to eat my culinary creations, which I just decided to dub, Pastor Pete’s Pottage.  Mercifully, the pottage is interspersed with Glory Day’s pizza slices, Bobo’s burgers, Perkin’s pancakes and a variety of take out foods.  This week Mary Ann is eating like a Queen.  I, of course, am not wanting for good food either, since she needs help in consuming it all.

When food is brought to us, as it has been this week, very often it is brought with the instructions that it can be put in the freezer (or some portion of it) to be enjoyed at some time in the near future.

One of the best things about the food this week is that it is coming at a time when I have been concerned about getting more calories in so that she can stop losing weight.  Convincing her to let me feed her is not always an easy task, but she has let me do so here at home more often.  When I help her, she eats much more.  She has been eating very well with all the good food that has been appearing at our home. We weighed her this afternoon and found that she had gained back about a pound, after having dropped five pounds.

At lunch today, Mary Ann age a full quarter of the Quiche, followed by that very large piece of Lemon Meringue pie.  With my help feeding her, she ate every crumb of both.  She had eaten a good breakfast, the usual yogurt, juice and a large bowl of Shredded Wheat Mini-bites.

She was very tired today.  Yesterday, she got up fairly early and then went back to bed for a relatively short nap.  She ate well and was up the rest of the day.  Today, after the good breakfast, she really shut down and needed a nap.  Shortly after Herb and Noma came by followed by Jeanne’s arrival, Mary Ann got up and was up the rest of the day.

There was one episode that moved me to go ahead and increase the Midodrine that raises her blood pressure.  Between the Quiche and the piece of pie, as she was sitting in the chair at the table, she just went out, had a fainting spell.  I managed to take her blood pressure after she came out of it.  Her BP was 100/60.  That is pretty low for just sitting in a chair.  It sometimes drops lower than that, much lower, when she stands up.  (One time during a tilt table test at the hospital, it dropped to 50/30, when she was moved from lying down to 70% of the way to standing upright.)  When she is lying down it is often as high as 180 or more, over 105 or more.

I have changed out the pills in her daily pill containers so that the dose of Midodrine will return to the pre-hospital stay level.  I have also printed from the Internet an article by the National Institute of Neurological Disorders and Stroke, a component of the National Institutes of Health.  The article describes a study of a drug named pyridostigmine (brand name, Mestinon), which seems to help the problem of Orthostatic Hypotension (low blood pressure when standing) without raising the patient’s blood pressure when lying down.  The drug’s intended use is to treat myasthenia gravis.  This is an off-label use of the drug.  The study concluded that a low dose of Midodrine combined with therapeutic dose of Mestinon was able to control the Orhostatic Hypotension in most of the subjects.

I will fax or mail or take the article to our Cardiologist to see what he thinks of the idea of trying this new approach.  Our Neurologist, a nationally known authority on the treatment of Parkinson’s, had suggested the option of using Mestinon when the problem of fainting got so much worse last summer.  The goal, of course, is to gain a manageable quality of life without raising her BP to a long term harmful level.

At the moment, Mary Ann seems to be sleeping soundly.  We will hope for a good night.  The weather is supposed to be great tomorrow.  Maybe we can get out of the house for a while.

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.

 

November 18, 2009

Parkinson’s Webinar Attended

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Mary Ann was pretty tired today.  While I managed to get her up, dressed, to the table for pills and breakfast in time to get to her Tuesday morning group, she did not feel up to it.  She had said when I got her up that she didn’t think she would go today, but I thought after waking up fully and being ready to go in time to get there she might change her mind.

She did act pretty tired after she got up and ended up taking a major nap beginning in late morning.  She probably would not have been able to stay alert for the entire length of the group meeting had she gone to it.

After getting up, she ate lunch and we headed out for a bit.  I needed some coffee. After picking up the coffee, I offered to take her and she accepted going to Dairy Queen to use our buy one, get one free coupon for Blizzards.

It was late enough in the afternoon that she ended up changing into her PJ’s and heading to bed very early.  The Blizzard will have to serve as supper.  I suspect there will be some snacking once or twice during the night.

At noon today, I attended a live Seminar on the computer.  They are called Webinars.  The Neurologist was both a clinician and a researcher in Movement Disorders.  This Webinar concentrated on the non-motor symptoms of Parkinson’s.

The motor symptoms are what people see, stiffness, tremors, shuffling gait, falling, speech problems, problems with swallowing, dyskinetic movements (wavy rather than shakey) caused by the medication.  Then there are many more symptoms that are not visible, that, in fact, have in the past been ignored even by physicians who did not recognize them as part of the Parkinson’s Disease.

It was interesting to hear the list of non-motor symptoms.  It was the story of our last twenty-two years (twenty-three in March).  Long before diagnosis came the first of the sensory symptoms, the loss of Mary Ann’s sense of smell (and taste).  At pretty much the same time the Rapid Eye Movement sleep disorder began, acting out dreams vocally and physically.  While not diagnosed, what sounds very much like sleep apnea also began.  Then came the pain in her left shoulder, going down her arm, the odd feeling in her left hand.

The presenter talked about the fact that in the vast majority of cases, the symptoms begin on one side.  Mary Ann’s symptoms were classic.  As the disease was diagnosed and progressed, early on, the bladder problems and constipation joined the party of symptoms.

Later in the disease process, cognitive issues have arisen, the tip-of-the-tongue frustration as words get lost just before emerging from the mouth (who among us doesn’t share that one). The Orthostatic Hypotension (fainting when erect due to low blood pressure) has come on board with a vengeance.  Hallucinations have also joined the other non-motor symptoms.

Mary Ann’s expression of Parkinson’s includes almost every one of the fifteen or so items listed as possible non-motor symptoms.  Again, they are the ones that are hidden from view.  The presenter pointed to a misconception about Parkinson’s: If she/he looks good, she/he must be doing well — not necessarily so!

One of the benefits of writing this blog, is that I get the chance to describe what is actually going on away from public view as we deal with this disease and its offspring.  When folks ask how Mary Ann is doing, I usually respond with something fairly non-committal, realizing that there is neither time nor interest in the gory details.  Actually, I have the benefit of a cluster of folks who have been in our home with Mary Ann, who understand the behind-the-scenes of what we are experiencing here.  I can share pretty openly with them.  They seem genuinely interested and they know what I am talking about.

There were two areas of disagreement with the presenter today.  She is obviously far more intelligent and knowledgable about Parkinson’s than I am.  Again, she is both a Medical Doctor and a Researcher in Parkinson’s.

She said that in all cases, a change in symptoms that comes on suddenly, in days or a few weeks, cannot be due to a progression in the Parkinson’s Disease.  It only moves very slowly, never quickly.  Her point is well made.  If something changes noticeably, get to the doctor to see what is causing it. Don’t just assume it is the Parkinson’s.  On the other side of it, having lived with Parkinson’s for almost twenty-three years, I am convinced that there are various times when the disease process passes a certain threshold that makes symptoms apparent, symptoms that were not at the same level days or weeks before.  They appear as rapid changes.

My analogy for that is the speech of a toddler.  When words first come, they are indescribably cute, coming one at a time, sometimes at surprising moments.  There is a time of a paucity of speech, just a word here and a word there.  Then all of a sudden, words start getting put together into intelligible streams, short sentences, soon becoming an endless torrent of speech.  It seems to happen so fast, when the process actually has been going on for months in that little mind.  The full speech just bursts out when finally a certain threshold is crossed.

It seems to me that over the years, that is how this disease has progressed, in fits and starts, pleasingly slowly at some times and frighteningly quickly at other times.

The other area of some disagreement was concerning the likelihood of the Parkinson’s leading to dementia.  The presenter seemed to say that the onset of any sort of dementia was just coincidental, not part of the Parkinson’s.  She said it was less likely in the early onset Parkinson’s than in those who were diagnosed later in life.  I had understood the opposite to be so.  Those whose primary symptom, especially at the beginning was tremors, have no more likelihood than anyone else to have dementia later.  At least I read or heard that somewhere.  I cannot guarantee that it is true.  Those whose primary symptom at least at the beginning was bradykinesia, slowness of movement, as was Mary Ann’s, are more likely to have dementia later on.  Again, that is what I have read and/or heard, whether true or not.

The presenter did not seem to be completely conversant with Parkinson’s Disease Dementia, the Dementia with Lewy bodies that can emerge later in the disease.  In fairness, her not mentioning it may have been more a function of the time available in the Webinar than any lack of knowledge.  Her credentials and focus on Parkinson’s and the research she is doing makes clear that she knows whereof she speaks.  I should not presume to question anything that she said.

All in all, the webinar was well done and interesting.  Since I agreed with 98% of what she said, she must have known what she is talking about!  Okay, I know my limitations.  It is just that after so long focusing so much attention on this Disease, watching it progress little by little, following its fluctuations from such an intimate vantage point, it is easy to feel like an expert on it.  The truth is, I am an expert only on one expression of the disease, Mary Ann’s version of Parkinson’s.  On that issue, I will defer to no one, doctor or otherwise.

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.

 

November 15, 2009

She is Eating Better

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The night went pretty well in spite of the fact that Mary Ann had long naps, and ended up getting up from the last one only long enough to change for bed and have a snack container of applesauce.

While having no supper last night has a lot to do with it, her appetite was good this morning.  She got up exceedingly early again (at least it seems so to me).  She ate a good breakfast at about 7am.  Then at about 9:30am, she asked for a sandwich.  She ate what she normally eats for lunch, half of a pretty good sized sandwich, lots of chips, Pepsi and Mary’s Jello dish (Cool Whip, lime Jello and cottage cheese) for dessert.

She has been down for a nap since about 10:30am.  It is 12:30pm now.  Actually, I was glad for the nap.  She had been in pop up mode for the morning.  When she is in pop up mode I am reluctant to head in and take a shower, expecting her to get up and fall.  She had at least one fainting spell this morning.

She got up shortly after 12:30pm.  Not too long thereafter we headed out to do some shopping for grandchildren’s birthday presents.  Mary Ann surprised me by being willing to go into Barnes and Noble and then Walmart to shop.  She had declined doing so yesterday.

We followed the shopping with a visit to Perkin’s.  I have been planning this trip as soon as she seemed to be ready to tackle eating in public.  I purposely planned to start with this spot, since she always orders the Buttermilk Three pancakes from the Senior menu, along with a half order of bacon.  I spread the butter, cut the pancakes into bite-sized pieces and add the syrup.  She can handle the bacon with her fingers.  She managed to eat about half the pancakes and all the bacon.  She was not willing to let me help her with the rest of the pancakes.  She was really struggling to manage the process of getting the pieces into her mouth.

This was her third meal today!  I am encouraged by that.  Through mention of it in passing in an online post, I was reminded that Exelon (she wears a 24hr patch) can in some cases cause anorexia.  Another side effect (among many) can be diarrhea.  That reminder caused me to pause a moment with the possibility that some of what Mary Ann is experiencing might have to do with the Exelon.  She has been taking it for over a year now if I am remembering correctly.  I suppose the food, sleep issues and meds at the hospital might have affected the way she metabolizes the Exelon, triggering a change is how she reacts to it.

At the moment, I am still giving plenty of time for her to return to the pre-hospital level of functionality.  I don’t want to make (or recommend) significant changes in treatment until it is clear that her symptom changes are here to stay.

Mary Ann had a snack of Tapioca pudding and went to bed at about 6:30pm.  I am hoping that she was up long enough today to allow her to sleep well tonight. Since there is not always a correlation between the amount of sleep during the day and the quality of sleep at night, we will just have to wait and see.

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.

 

November 14, 2009

Fainting Returns!

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Twice today Mary Ann fainted.  She has not done so in many weeks.  The fainting is due to a sudden drop in blood pressure, referred to as Orthostatic Hypotension.  It is another of the systems run by her compromised Parasympathetic Autonomic Nervous System.  That system runs the smooth muscles, such as those that create the peristaltic movement that keeps everything moving through the alimentary canal (esophagus, stomach, intestines, colon).  It also runs the smooth muscles that cause our arteries to constrict when we stand up, raising our blood pressure to compensate for the pull of gravity.

That was a lot of technical language that simply means that people with Mary Ann’s version of Parkinson’s and Dementia are often constipated and often faint after getting up from a sitting or lying position.  In both cases today, Mary Ann fainted when on the toilet stool, after trying to get up.  Having watched this at close range for so many years, it was clear to me that both syncopal episodes (medical term for fainting is syncope) happened when a dose of her generic Sinamet kicked in.  When it kicks in her body starts involuntary wavy motions called Dyskinesias.  Sinamet (Carbidopa-Levadopa) is the main medication that treats Parkinson’s.  It is the same medication that has been used for decades.  Most of the newer meds just help the Sinamet do its job better.

During the hospital stay, I suggested lowering her dosage in half of the medicine (Midodrine) that raises her blood pressure to keep her from fainting.  Last summer we doubled the dosage when the fainting got out of hand and was reducing dramatically our quality of life. That medication and the higher BP slowly damages the heart, reducing its flexibility.  Her heart is enlarging, stiffening, her kidneys are being damaged.  If we eliminate the Midodrine, it might add a little time, but the time would be of little quality.  The goal of my suggestion of lowering the dosage is to find a middle ground that gives us the best we can get of both longevity and quality.

I am not yet ready to raise the dosage of Midodrine.  If the fainting comes only when the Sinamet kicks in, I think we can manage the problem.  If the fainting increases to the level it was last summer (multiple protracted fainting spells, sometimes even just when sitting in her chair) we will need to increase the Midodrine back to the full dosage.  We will do what is necessary when it becomes necessary.  Gratefully, the Cardiologist and Neurologist understand the problem and have given Mary Ann and I the freedom to adjust the two meds (Sinamet and Midodrine) within a prescribed range as we determine appropriate.  I am grateful for the latitude in dosing, and I also feel the weight of that responsibility.

The day continues: Mary Ann slept until about 2pm.  I got her some lunch.  She did reasonably well at feeding herself.  She still is not eating enough.  I convinced her to let me help her with some cake after lunch.  She kept putting the fork to her cheek instead of to her mouth.  She was resisting my help, but eventually I was able to get most of it in her mouth  She managed a snack of ice cream later.

We got to the grocery store!  I was hoping we could get it done.  Since she is in the wheel chair, mobility is not an issue when going to the grocery.  I push her with one hand and pull the grocery cart behind with the other.  It is a little tough on my wrists, especially when she drops her feet to the floor and I am pushing against rubber soles on a tile floor.  Years ago, she used one of the motorized carts.  We gave that up.  There were too many displays put at risk by a driver with spatial issues.

We brought home Sesame Chicken from the Chinese counter in the store, so supper went pretty well.  She went to bed at about 7pm and has been sleeping pretty soundly since.  The first couple of hours after she goes to bed are usually pretty good. I will continue this post tomorrow with a report on how the night went (way more information than any who read this blog actually want or need).

Next day (Friday):  The night wasn’t too bad, but it was another early morning with multiple trips to the commode in the wee hours of the morning and finally up before 7pm.

She ate a good breakfast with my help on the bowl of cereal.  After a while in her chair she wanted to get dressed.  Immediately after getting dressed, she got back in bed for a nap.  That was about two and a half hours ago.  She did get up once for a trip to the bathroom.

The issue of fainting continues to be a concern.  She said that she has been dizzy the last couple of days.  That is usually from the low BP.  I tried to take her blood pressure while she was lying in bed this morning, but it didn’t register on the electronic monitor.  That usually means it is too high for it to measure.  BP is usually highest when lying down, since the heart is not pumping against gravity.

While she hasn’t actually fainted today, she came close to it once when I was trying to get her to the bathroom.  She also has seemed to be dizzy at least a couple more times.  I suspect that the switch to the higher dose of Midodrine will be needed.  I am giving it another day to be sure.

The day continues:  After getting up from her nap, I discovered something mightily irritating.  We had to start using new disposable underwear today.  Kroger’s generic has worked very well for us.  They have just discontinued the combination male/female one for new gender specific ones.  The same size and weight as we used before, but in the new female version managed to leak.  It happened twice.  All her jeans had to be washed.

I can only conclude that someone in the Kroger braintrust decided that it would be better for sales if they marketed gender specific disposables.  That would be fine if they had bothered to make them in a way that actually accomplished their purpose.  To those of us who use them, it is no small inconvenience.  The small amount it took to leak the two times it happened today suggest that a long nap or a long time between trips to the commode during the night would provide enough leakage to demand changing the bedding and washing the linens, as well as whatever she was wearing.

I took them back to the store, got my money back and bought the Depend’s brand in hopes that they will work better.  Even though they also are gender specific, the appear to be constructed in a way more like the generic male/female ones we were using.  The Depend’s brand, of course are $12 and change versus the $9 and change price for the generics.  We buy three or four packages every time we go to the store.  There goes the grocery budget.  We will soon determine if the Depend’s are adequate to the task.

The good news is that I found part of a package of the old generic ones in the bathroom closet.  Hopefully that will get us through until tomorrow.  I change the disposables often to protect against urinary tract infections.

Mary Ann was up for a while this afternoon, after her long nap.  She ate a good lunch, lots of left over Sesame Chicken and a huge piece of cake with ice cream.  We were able to run a number of errands with her in the car while I did the errands.  She is now down for her third nap.  It didn’t begin until almost 5pm.  It is now almost 7:30pm.  She has had no supper.  I don’t think there is a chance there will be much 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.

 

November 8, 2009

Fourth Day Home From The Hospital

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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It is about 11:30am and Mary Ann is still sleeping.  She got up last evening long enough to eat some ice cream and apple crisp.  Then she took her pills, went back to bed and slept the entire night.  This morning, there was a commode trip at about 7am, then at about 8:30am she got up long enough to have juice (with Miralax) and yogurt.  Then she decided she wanted to go back to bed.

The good news about this is that when she has been up, she has been able to interact verbally and has not been picking up threads that are not there, nor has she acted as if she was hallucinating.  Her head is no longer hanging down on her chest.  Needless to say, those are encouraging signs. She is still unable able to eat without assistance.  I fed her last night and this morning, even putting her pills in her mouth.  She did manage to lift the cup and drink most of the juice by herself.

Yesterday, I chose not to awaken her for medications.  Most of her meds are intended to help her when she is up and about.  Most of them have a short half life.  They help when they are in her system, but are not necessarily maintaining a constant level of medicine 24/7.  Missing one dose of the meds seemed to me to be acceptable. I concluded that the rest was more important.  She did take her night time meds, so there has been no interruption in them.  She took the morning pills today, and while she was lying in bed, I changed the Exelon patch she had worn for two days.  That is a med that needs not to be stopped for long.  It is pretty powerful and when initiating the patch, it takes a month on a lower dose to keep from creating the unpleasant side effect of pretty bad nausea — been there, done that.  I am also going to wake her up for the meds that come every two hours during the day.  My goal is to return to and maintain a normal schedule in hopes that will help us return to the pre-hospital norm.

The other parallel recuperation activity needed includes intestinal activity.  There has been some activity, this morning during the 7am trip to the commode.  Then before going to back to bed after breakfast (the yogurt, juice and pills) there was a little more substantial activity.  At the risk of being indelicate (there is nothing delicate about being a Caregiver), it is still at the stage where manual help is needed.  With that lovely image in mind, you can appreciate my excitement when things come out on their own and Dr. Oz’s S appears.  We are not yet back to that wonderful normal.  At this point I am hopeful that in a couple of days we will be there.

Of course I cannot know where this will go, but my intention is to methodically do all the things we have normally done in the past as they are possible.  My hope is that by Tuesday, a week from leaving the hospital, normal will have returned.  Whatever is so by then will probably need to be established as our new norm.

My need to establish a norm of some sort, any sort, comes from the way I am wired.  When I get a set of expectations in mind, it is tough for me to incorporate changes very quickly.  Since retirement, the rewiring is in progress.  By removing almost all commitments, there is space and time to adapt to whatever changes come without the added stress of failing to meet those commitments.  When we went to the hospital, there were a few appointments (dentist, doctor, among them) to be changed, but nothing for which I had to find substitutes or burden others to do for me.

Even though things can change dramatically at any moment (as in Saturday’s entrance into the hospital), the norm is where my pivot foot rests when I turn to meet the unplanned, unexpected.  Unlike Michael Jordan in his best days, I cannot hang in the air for very long without a place to stand.

In a moment of devotional time last evening, I read this prayer.  I receive a weekly email from the National Catholic Reporter web site with a devotion by Fr. Ed Hayes.  (Yes, they allow Lutheran Pastors on their site.)  I have appreciated his writings for decades, and I had the privilege of doing a marriage ceremony with him many years ago.

I need prayers for flexibility!

A Psalm of Flexibility

By Ed Hays
Created Nov 06, 2009

O spirit of God’s eternal springtime heart,
grant me the virtue of elasticity.

Make my heart as boundless as my Beloved’s heart,
which at this moment is creating
new galaxies and infant suns.

Make me pliable and playful with your Spirit
as you teach me the alchemist’s recipe
of how to keep my heart’s skin
like baby’s skin, ever-expansive,
able to hold the wildest of wines.

Stir my mind well with your sacred spoon
to awaken the fermentation of ideas
stilled by the ten thousand little compromises
required of me by the stiffness
of the old leathered skins of society and religion.

Gift me with elastic frontiers of heart and mind,
so I can see before my eyes,
both in the heavens and on earth,
how old and ever-new are those partners
passionately dancing together
in the perpetual birthing of your universe.

From Prayers for a Planetary Pilgrim by Ed Hays

The Spiritual support I receive through Ed’s writings, through the Taize Music from their site, from Weavings, a spirituality journal, through Scripture, corporate worship and the Spiritual Formation Group that meets at our house weekly, helps provide the source strength that has allowed survival so far.

There are many wonderful folks who give personal support to our household.  Yesterday afternoon, John called and asked to come over for a time to talk.  John has been a support for very many years.  Mary, our friend who schedules Volunteers, had let him know that things were getting a little hard to handle at our house.  Yesterday, Edie, the leader of our Spiritual Formation group emailed about the possibility of bringing dinner over.  Don and Edie came over and we feasted on lasagna, salad, gourmet bread, some Shiraz red wine, topped off with apple crisp and vanilla ice cream.  Mary Ann slept through supper, but ate a big bowl of apple crisp and ice cream later in the evening.

It is now about 1:30pm and Mary Ann is still sleeping soundly.  She has had two rounds of the meds that come at two hour intervals during the day.  To administer the meds, I put my hand under the pillow, lift her head, put them in her mouth, hold a straw to her mouth and she drinks until the pill(s) are down.  Often, when I give her the pill(s), she gets up from napping.  The last few days when I let her head back down, she just goes back to sleep.  It has not been unusual in the past for her to continue to sleep, just not so many times in a row.

She finally got up and dressed around 2:30pm.  She ate a little more, then provided some unaided intestinal activity worthy celebration.  She went back to bed at about 5pm.  It is 9:30pm now.  She is still sleeping.  We will see how the night goes.

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.

 

November 5, 2009

Second Day After Hospital

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There is smoke coming out of the china cabinet!  You had better wash that bedspread, there is dirt all over it.   Is that cat real?  The cat question was a bit encouraging since she did not simply assume that it was real.

She accepted my offer to feed her when she just couldn’t seem to negotiate her bowl of “Little Bites” shredded wheat.  She had managed most of the yogurt on her own.  She again had trouble getting the straw to work as I tried to get her to finish the Miralax in water.  That is one of the most important items in her medication regimen.  At first she wanted to drink without the straw, but there was no way to get her head erect enough for the water to make it in her mouth.  In the hospital, when she was most disconnected at night, she couldn’t manage to suck on the straw, but blew through it instead.

There have been some moments of lucid interactions.  As she was lying down for a nap (about an hour after getting up), she mentioned lisiening to the “radio” meaning the book on CD that we were listening to on the trip.

By the way, she did sleep better after the applesauce last night.  It is a good thing.  I was running out of patience with the constant needs every few minutes.  There were more times up throughout the night, but there was enough time between them to get some sleep. She did get up pretty early this morning.

I am starting this post early in the day in hopes that I can get to bed earlier tonight.  Of course, my hope is that Mary Ann will be able to get to sleep at a reasonable hour and stay asleep other than a few trips to the commode during the night tonight.

It is now mid-afternoon.  It continues to be a very difficult day.  After her nap, during which I wrote the paragraphs above, we attempted lunch.  There was a piece of Glory Days’ Pizza left from yesterday.  That is her favorite.  I cut it up for her, and she managed a few bites of it with her fork.  Normally, she has no trouble eating small pieces of pizza with a fork.  Finally, I needed to help her. As she had yesterday, she tried to take a drink of Pepsi and set the cup down on top of the pizza on her plate, seemingly unaware that she was doing so.

She ate a few bites of her favorite green Jello, Cool Whip and cottage cheese salad that Mary brought yesterday.  After a two or three spoonfuls she was done.  I offered her a chocolate chip cookie.  She could not negotiate holding it and getting it to her mouth.  I helped her eat half the cookie.

We drove over to Doug and Marikay’s so that I could get a much needed haircut.  She sat with her head down during that time.  When we drove back by the coffee shop, I offered to use a buy one get one free Dairy Queen Blizzard coupon.  She just couldn’t answer intelligibly.  I concluded that she did not want any.  She would not have been able to handle eating it at the DQ, but we could have brought them home.

Moments ago, she wanted to go to the bedroom for some reason of which I was not aware.  When we got there, she wanted to get dressed for bed and was irritated that I didn’t realize what she thought was obvious.  I explained that it was only 3:30pm, and she recognized that it would be too soon to go to bed.

She is now listening to the book on CD that we started on our trip to Hot Springs.  What a dramatically different place we are now, less than a week from the time we were enjoying there.  I just asked if she had any pain or anything was hurting.  She said clearly that she was not hurting in any way.  Her head remains hanging, but she seems to be awake.  I don’t know if she is able to follow the book, but at least at the moment she is remaining in the chair.

I continue to hope that at some point she will snap out of it.  Right now, we would not be able to manage going out to eat in a restuarant, one of our main treats.  This is a whole new place in this trek, a place we would rather not be.

So far this is a pretty distressing day.  She is lying down again.  It is about 4:45pm.  I asked her earlier if it would be okay for us to go to the Parkinson’s Support Group tonight.  She connected with the question and said it would be.  Then a while later she fell while I was on two phone calls, one a survey from our Financial folks on the land line and another on the cell phone from our Son who is on vacation with his family in Colorado.  They had just seen an American Bald Eagle as they were driving along.  She decided she did not want to go to the Support Group meeting.  She said she needed to lie down.  There had apparently been lots of drainage from her mouth the last time she was napping.  I hadn’t noticed just how much it was earlier.  I changed the bed and have her bedding and pillow in the washing machine at the moment.

I am writing lots today, I suppose on account of the need just to talk about what it going on.  This is a new level of need.  At moments like this there is a sense of isolation that comes, recognizing that even with all the support we have from so many wonderful people, ultimately we are on our own as we deal with this.  No one can do it for us.  Others have lives full of needs that they must deal with.

I am, of course, confident of the Lord’s Presence.  Even the Lord experienced a sense of isolation.  It is helpful to recognize that kinship.

On a lighter note, I forgot to spring the live trap this morning after there was no raccoon to be found in it.  A squirrel managed to trip it while foraging for seed that had fallen into the trap.  Is he going to have a story to tell!  He moved like lightning when I opened the door to the trap.

There may be more to tell as the evening wears on, but I will post this now and write more later or tomorrow.

Addendum: Mary Ann got up from her third nap today just long enough to change into her pajamas.  The sheets needed to be changed again on account of the drainage from her mouth.  The washer and dryer are getting a workout.  Logic says that tonight will be a restless night since there were three naps today.  I guess my hope is that she is sleeping off the confusion and will soon return to normal. 

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.

 

November 4, 2009

Home From The Hospital.

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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Finally!  We came home around 3:30pm today.  While the staff at the hospital was wonderful, and Mary Ann had excellent care, the dementia has increased dramatically.  Physically, she is fine.  We are back to normal, riding the margin between heart issues and Autonomic Nnervous System issues (fainting due to sudden drops in blood pressure).  It is not, of course, where we would choose to be if we had a choice, it is just what is so.

From the very first sleepless night, the first night we were there, the decline has been steady.  Last night was terribly difficult.  I put up the rails on the bed so that she would not get up and try to walk by herself on a very slippery, very hard floor.  She just could not accept that the catheter allowed her to stay in bed rather than head to the bathroom.  She saw people and animals and messes here and there.  Today she described in detail a busy cluster of bees on the floor at some time during the night.

I sat beside her on her bed for fifteen minutes to a half hour a number of times during the night.  At one point when she was awake, in the middle of the night, I checked my watch to see how much time there was between the need for me to get up and respond to her or help her.  The time was usually between ninety seconds and two minutes.

I realized that if we were required to stay another night, I would need to arrange for a paid companion so that I could get some sleep.  The constant nighttime needs are more than I can handle and remain rational, patient and helpful, after just two or three nights like last night.

Talking with the doctors helped clarify just how important it was to get back home to a stable routine and familiar setting.  They agreed that the additional tests being considered would not serve any real purpose.

While there were differing opinions by the two doctors and the Physician’s Assistant, two out of three felt that there was no compelling reason to expect more vulnerability to Congestive Heart Failure than there has been since the first bout five years ago.  We are going to return to our pattern of life to the degree the dementia will allow.

Mary Ann decided to go to bed at 5:30pm this evening. She has been up and down a a few times already.  Of course, I won’t know how tonight will go until morning.

I had mentioned in passing to one of the nurses that I appreciated having all the folks at the hospital with the care recognizing that Mary Ann and I would pretty much be on our own to deal with the aftermath when we got home.  I suspect she mentioned it to the Social Worker at the hospital who came in to talk with me before we left.  It is the norm that a Hospital Social Worker will check to see what if any needs there might be when a patient goes home.  This time the questions indicated some extra effort at listening to our situation.

The Social Worker mentioned that the nurses had spoken well of the care being provided Mary Ann.  Since I am no longer in a role that provides opportunity for external validation it was especially meaningful to hear those words of affirmation.  The Social Worker seemed to feel very good about the support system we have, from family and the congregation.  She sees folks who have little or no support as they try to care for a Loved One.

The day tomorrow is a full Wednesday.  It will be interesting to see how Mary Ann does with all that will go on.  I am going to continue our activities based on the assumption that alertness and the ability to track will return and the hallucinations will diminish. It that improvement does not come, we will adapt.  It is what we do.

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.

 

 

 

November 2, 2009

To the Hospital We Go!

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This is one of our most dreaded experiences.  Mary Ann felt some chest discomfort after a long nap Saturday afternoon   We had returned home from Eureka Springs Friday late in the day.  We were in the car when she mentioned the discomfort.  I gave her a Nitroglycerin pill (sublingual) and we drove to the next stop to give it a chance to work.  It did not seem to help.

She described the pain as a heaviness in her chest rather than a sharp or focused pain.  I recognized that as the Congestive Heart Failure sort of description of discomfort.  We stopped at the house to pick up a couple of things and headed off for the Emergency Room.

Sure enough, she was in heart failure.  There was Pulmonary Edema, fluid build up in her chest.  There also were slightly elevated heart enzymes which could indicate a heart attack of some sort.  The blood tests since then have indicated that there was not a heart attack, just the Congestive Heart Failure.

She was admitted so that they could go through the normal series of tests to check things out.   Of course, since it is a weekend, any tests other than xray and blood tests need to be done on Monday.

Hospital stays are dreaded not because there is something wrong with the hospital or the staff.  One problem is that the complexity of Mary Ann’s cluster of problems and the many medications taken at very specific times are hard to handle with rotating shifts and rules that are constructed to cover any liability for mistakes. That complexity demands my staying with her in the room 24/7 until she goes home.

As usual, she was up the entire first night.  And, of course, so was I.  Gratefully, she did sleep much of the night last night.  I had anticipated being up all night every night, so getting some sleep last night was a treat.  Of course there were very many times during the night that vitals were taken, blood was taken, and various other activities woke us up often.

Getting the meds from the hospital pharmacy is tedious and frustrating.  There are patterns that need to be followed that sometimes result in the timing of pills changing in ways that don’t make sense in terms of the result that is sought from taking them. The staff has been willing to accept my input, making that issue less of a problem.

The doctors are tugged in so many directions with emergencies often tying them up for long periods of time (a good thing for those having the emergency) that there is no knowing when they will come in for the report, to answer questions and give instructions.  As a result those of us who are Caregivers have to remain in the room until they arrive — no matter when in the day that turns out to be.

This morning we are waiting for the doctor to tell us if Mary Ann will need a heart cath (unlikely at this point).  Just in case the test is to be done, she can have no food or drink.  It is after 9:30am (10:30am according to her body clock since the time changed yesterday) and she has been begging for food or drink since about 6:30am.  She was pretty tired and unresponsive yesterday, so had very little food, only a couple of snacks.

One of the most difficult problems to negotiate at the hospital is that the combination of the stress, lack of sleep, medication changes, and the changed routine results in lots of confusion.  The hallucinations increase.  There have been lots of people in the room (not actually here), needles, threads, water, and just a few minutes ago, a ten dollar bill on the floor.  After confirming that it was not there, I suggested that she keep working on that one and make it a twenty.  She immediately responded “greedy.”

Sometimes in the past she has gotten pretty resistant, sometimes unwilling to do what she is asked, sometimes pulling out tubes, getting almost belligerent.  This time there has been just a little of that, at least so far.  It has been manageable.

Our Son, Micah, came for most of the day yesterday, so I had a chance to go home and shower.  It was too bad she was not able to stay awake or respond much to him.  She still appreciated his presence.  They have a good time together.

I am pleased that there is wi-fi here so that I can check email and write this.  Last night the connection was going on and off so often that I never did get this finished and posted.  I was too tired to keep waiting for the connection to return, so I gave up and fell asleep.

That is all I will write for now.  We hope to be home soon, but will, of course, deal with whatever comes.

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.

 

October 25, 2009

Travel Preparations Today

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This time I have made sure that we have all the back up bottles of medicine. The last trip brought more than one medicine crisis — trips to the local 24 hour pharmacy in Louisville.  This time we are heading to Hot Springs, Arkansas.  I have just done something almost unheard of in my travel pattern.  Everything is packed and most of it is already in the car.

I am not sure I can remember when last I actually packed before the morning of the trip.  As I have mentioned in former posts, packing is no small task when packing for two, one of whom is not able to participate in the process.  Portions of the day were spent bringing Mary Ann’s clothes out of the closet for her to go through.  Last trip, she was not pleased that I had managed to forget the nylons that went with her fancy pants outfit.  By the way, on the last trip, those pants caught on her wheel chair when she was sitting down and obtained a very large vent where the seat of tht pants should be.  So much for those fancy pants.  I think we have covered the bases with clothes for warm and for cool.

The black case is a must.  That is the large catalog case with first aid supplies, straws, wipes, plastic silverware, Clorox wipes, Miralax, Tums and anything else I can think of that we might need along the way.

We have been to the library to pick out a few books on CD to choose from as we travel. One is already loaded into the CD player in the car.

There is a bag of snacks, granola bars, bananas, licorice, and breakfast fruit bars.  Sometimes when we stay in a motel, we don’t make it up in time for the breakfast hours and need items to eat so that the morning pills aren’t taken on an empty stomach.

We have lots of the disposables along.  The intestinal issue is not completely resolved.  I am expecting there to be a major production some time soon  That is as delicately put as I can manage while revealing one of the significant challenges Caregivers often face.

I took the role of the bath aide this morning so that we would start the trip at our best — squeaky clean.

We have far more along that would seem necessary for a three night stay at a Bed and Breakfast.  Since the trip is eleven hours one way, we need to break it up into two days for the trip there and two days for the return trip.  We have on occasion had to lengthen a trip for one reason or another.  The one to Tucson, Arizona a few years ago was lengthened by a few days in the hospital.  Those experiences remain in the back of our minds each time we set out on a trip.

And so we are heading off for another adventure.  We cannot know how it will go.  We know far too much about the possibilities for how it might go.  We have tried to prepare to the degree possible.  I just added the booklet we have made with all the pertinent information, doctors’ names and numbers, Durable Power of Attorney for Health Care, Medicine list, family contact information.

With all the preparations made, we actually will relax and enjoy the trip to the extent that circumstances allow.  If there are problems, we will deal with them.

We will be gone for about a week, so the posts will be few to none.  There is a computer to which we will have some access at the Bed and Breakfast.  I hope to provide an occasional update, whether anyone is interested or not!

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.

 

October 16, 2009

Quality of Life Is a Prime Consideration

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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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.

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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