The “fall out” on this leaning day is that Mary Ann fell out her chair at the table.  She was sitting in the chair and had been leaning to one side.  I kept straightening her up.  Then, all of a sudden she was in a heap on the floor beside her chair.  She did not move slowly toward the side on the way down, she was up in the chair and the next moment she was on the floor.

She was not hurt.  It took quite a while to get her up since there is not much room between the table and the wall.  I needed to get her situated on her back so that I could pull her up using my own weight as a counter balance with our feet together as the fulcrum.

There were two Volunteers in the morning, one during the Spiritual Formation Group that meets at our house.  The other was there while I headed out for an appointment.  I don’t know to what degree the leaning was a problem during those times, but from the time I returned shortly after noon until she went to bed, the leaning was prominent.

It was at lunch that she fell.  Mary (who schedules Mary Ann’s Volunteers) came over for a visit this afternoon.  Mary Ann leaned over the side of her chair the entire time.  I helped her sit up straight again numerous times, but she only remained erect for a few minutes at the most each time.  Others in the online group of Spouse Caregivers of those with Lewy Body Dementia often mention the leaning issue.  It is neither unusual or alarming.  It does not happen every day.  This just happened to be a leaning day.

For supper, I switched chairs at the table so that Mary Ann was sitting in a heavy oak chair with arms.  It did not stop her from leaning, but at least she did not fall out the chair on to the floor.

Mary Ann seemed sometimes to be napping when she was leaning, but she was often awake while leaning.  She was tired, and has gone to bed a little early.  She fell asleep pretty quickly.  That does not mean she will stay asleep, but for the moment she seems to be sleeping soundly.

When I got her changed and into bed, I noticed that her feet are a little swollen.  I will watch that carefully.  That is, of course, a sign of fluid retention which could put her at risk of another bout with Congestive Heart Failure [CHF].  The two times she has had to go to the hospital with CHF, she did not have swollen feet.  I asked her if her chest hurt, and she said it did not.  We will certainly not go to the hospital unless the signs are absolutely clear that we need to.  We lose too much ground during hospital stays.

I talked with the Neurologist’s Assistant today about Mary Ann’s Seroquel, the medication that’s purpose it to diminish the hallucinations . It is time to renew the prescription.  We revisited the decision to increase the dosage since the hallucinations have been on the increase.  With the permission of the Neurologist I tried increasing the med early last fall but ended up moving back to the original dosage.  Given present circumstances, it seems wise to try again.  The Neurologist concurs.  As soon as the new prescription comes in, I will titrate her from the 100mg tab to the 100mg plus a 25mg for three days, then move to 150mg, one and one half of the 100mg tabs daily.  That is still not a large dosage compared to others.

Today was a sort of ingathering of food, for which we are always grateful.  Maureen came in the morning laden with food, some for the freezer (soup and bread), some for supper (roast beef, potatoes and gravy, green beans), some blueberry muffins for a morning treat, and cookies to be enjoyed for the next few days.  Margaret came later in the morning with some Jello cups, a couple of cinnamon rolls and a couple of containers of chili along with crackers.  Mary brought with her some cookies from the Copper Oven, some chocolate treats and a large container of Mary Ann’s favorite version of Seafoam Salad.  Why does Mary Ann refuse to gain weight???  I, of course, can barely button my trousers.  I could do that commercial in which buttons fly, breaking household items.

Yesterday, I had a treat.  A member of the congregation from which I retired is celebrating her 101st birthday today.  I got to hand deliver a birthday card from Mary Ann and me to her yesterday.  Bernice (pronounced Burr’ niss – emphasis on the first syllable) is one of the most pleasant, sweetest people I know.  What a joy just to interact for a few moments.  Mary Ann was in the van, so I could not stay and talk.  The last time I visited with her a little more than a year and a half ago, we talked about the early years when she was growing up, all the hard work and happy times.  While I did not make as many of those calls on the homebound as I should have, it was not because I didn’t enjoy them.  In fact, twenty-five years ago, when I was responsible for the Youth and Education programs of a congregation, it was a couple of visits with a homebound member of that congregation who was in her 90’s that convinced me that I needed to move to a setting in which I could include that dimension of ministry regularly.  It is hard to find words to describe the extraordinary faith and gracious demeanor of those two ladies.  In each case when I left the visit, my spirit had been nurtured.

A trip to help Mary Ann use the commode revealed that she is seeing people again tonight.  I hope the hallunations don’ t keep her up.  I am very tired, and hope to get a decent night’s sleep tonight.

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“Would it be okay to bring supper over for you and Mary Ann?”  I was sitting by the phone and answered quickly.  Maybe it was a premonition.  Not really.  That is not part of my understanding of reality.  It was however a very pleasing phone conversation.

Then at about 5pm, the phone rang again: “Just a heads up, we are on our way.”  Shari and Martin are among the most thoughtful and generous people I know.  I would be hard pressed to name all the people between them they have helped out in one way or another.  They help with their time and attention.  They accommodate their busy schedules, they are both professionals working full time, to the schedules of those they help whenever possible.  I have no idea how they do it, but we are greatful at our house that they do it.

It was not just any food.  Shari checked one of the last church cookbooks to find recipes Mary Ann had provided when the book was produced.  That way she was sure Mary Ann and I would like what she and Martin brought.  Mary Ann loved it and ate more voraciously than has been her recent norm.  Catalina Chicken (Mary Ann’s recipe), baked potatoes, corn, a freshly baked loaf of bread, a hot rhubarb pie (Mary Ann’s recipe), and vanilla ice cream to have with the pie.  All of it was piping hot (except for the ice cream) and ready to eat.

That makes twice in three days, since Edie and Daughter Gretchen brought over part of the midday meal they had prepared on Saturday, a very tasty Taco Salad with wonderful and creative toppings.  They stopped by to show Mary Ann some quilts that Edie’s Sister had made.  It was a treat for Mary Ann to look at the fabrics used and the patterns and the stitching and the colors.  Norma likes best piecing the quilt tops.  Mary Ann also enjoyed that the most in the process of making quilts.  I remembered enough of the jargon from those years to recall out loud some of her experiences.  There was the first quilt, a Sampler Quilt, hand quilted over the span of two years.  There were the six baby quilts Mary Ann brought out and put in front of Becky when she was pregnant with our first Grandchild, Chloe (who, by the way, is also Son Micah and Becky’s Daughter — you Grandparents catch my drift).  Mary Ann clearly moved back to those days as she examined and handled the quilts, even if there were few words.  The quilts were strikingly beautiful.  The quilts, lunch and a pot of flowers, Gretchen had put together provided us with a very bright day in spite of the lingering fog outside.

Tamara came over tonight to spend time with Mary Ann.  She had been sick a number of weeks ago and had not been able to visit in a long time.  Mary Ann had a refreshing break from me, and I was able to get done some things in my office that demanded uninterrupted attention.  Not only that, but two more people have taken slots in the next two weeks to allow me to connect with others and give Mary Ann the stimulation of communicating with people outside of our little, confined world.

Mary Ann has been doing reasonably well in the past couple of days.  Saturday night was not the best for sleep, and tonight she just said the raccoons have returned.  I told her that there has been not trace of them in many weeks outside.  The snow would have immediately revealed evidence of their presence.  She was not convinced.  On the contrary, she simply said, “Well, two raccoons have returned!”  That does not bode well for tonight’s hope for very many hours of uninterrupted sleep.

Well, I had best get to bed.  Tomorrow will be an early day, since the Bath Aide was off for Martin Luther King Day.  I will need to get Mary Ann’s hair washed in the morning before her Tuesday morning group at church.  She was not up to going last week.  I hope she goes tomorrow.  She really enjoys that group of good friends.  They have a love and concern for her that warms my heart.

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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.

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