The Caregiver Calling

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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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.

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Mary Ann had a pretty good day today.  Zandra, the Bath Aide, gave her a shower,  washed her hair and got her dressed.  Zandra comes on Monday and Wednesday mornings.  She had had a decent breakfast, needing only a little help.  She napped for the rest of the morning.

She ate at normal lunch, half sandwich, chips, Pepsi and a cookie before we left for her Dermatologist appointment.  All was well there.  she was able to communicate pretty well.  We were in the territory of G’s Frozen Custard, so there needed to be a break for a treat.  With some difficulty, she managed to eat the ice cream without help.  I always order hers in then next larger cup, double cupped to make the eating easier.  The larger cup provides more space to get the ice cream (or whatever) on the spoon before it slides over the edge.  Since her hands are stiff, her fingers hard to control and her hand muscles strong from the dyskinetic movements, her fingers could pop through one layer of Styrofoam cup (learned from experience), I always ask that it be double cupped.  Any thing served in thin clear plastic cups needs to be double cupped also.  Otherwise her hand squeezes it too hard, sending the liquid over the lip and on to her clothes or the floor.  A little anticipation can help lessen the likelihood of messy problems.

After a couple of errands, we headed home.  Mary Ann ate a good supper.  A Volunteer stayed with her while I did some emailing,  Actually, I dozed a bit in the office chair at the computer.  The nights have been a little short and the mornings a little early lately.

She is in bed now and seems for the moment to be resting.  I see some movement, but, hopefully, she will fall asleep soon and have a good night.  That would be good for both of us.  By the way, the night before last, as she was getting into bed, she said that she was glad the raccoons had left.  She was referring, of course, to the ones she has been seeing in her bed in the past.  I certainly hope the hallucinations remain at bay for a while.

It continues to be encouraging to see small improvements after all the losses incurred during the hospital stay.

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Today was a good day in most respects.  Mary Ann got up, ate, took pills and got dressed in anticipation of Volunteer Jan’s arrival.  Jan did her hair and nails, a real treat.  Mary Ann had eaten a good breakfast with some help.  Around noon she ate a half sandwich, chips, Pepsi, and large and tasty chocolate chip cookie that Jan had brought.

Mary Ann was up all day, watching football — her choice.  The Chief’s won!!! She was awake and mobile enough for us to go to the Evening Service at 6pm.  She ate a little supper before church and headed to bed shortly after church.

This was pretty much a normal day even by pre-hospital standards.  So far it appears that our new normal will include a little less mobility.  Eating by herself was a challenge before the hospital stay.  She now needs help much more often than before.  Walking unaided seems to be less of an option now.  It seems as if in most other areas, we are back to pre-hospital stay levels.  That is pretty encouraging.  I won’t deny that the last couple of weeks have been scary and stressful, with lots of fears about the possibility of not regaining any of what had been lost.

Maybe it was the barometer change today, but my time away this morning was not so refreshing as usual.  The rain did not allow the long walk that releases the mood-lifting endorphins.  I sat in the car enjoying the peacefulness of the rain at the lake, listening to a CD.  The Taizé Music seemed to open a certain vulnerability to thoughts and feelings that usually don’t have the time or space for attention with the moment by moment demands of the caregiving.

I am embarrassed at the self-centeredness of the thinking, but I have never pretended to be perfect — far from it.  I began thinking of who I am as an individual, separate from my role.  I thought of all sorts of things I have not yet experienced in life, things that most likely will never come to be.  I am not absolutely sure that I would really do some of them even if I had the chance.  That is why I titled this post “imagined Possibilities.”

Imagined Possibilities:

• Singing with an Early Music vocal ensemble.
• Spending a week of study and reflection at Holden Village.
• Hiking a section of the Appalachian Trail.
• Birding in New Zealand, hiking to see some of the waterfalls.
• Seeing the Snowy Mountain region of Australia, visiting each part of that huge country.
• Visiting Cornwall England and searching out my Father’s ancestral home there.
• Visiting County Cork Ireland, from which my Paternal Grandmother came.
• Heading off to Poland and Germany to see where my Mother was born (a German settlement in what is now Poland).
• Spending time at the Taizé Community in France and singing the music, having a chance to serve as a Cantor.
• Seeing some of the National Parks with my own eyes.
• Going on Spiritual Formation retreats at various places in the US.
• Probing with great minds the intersection of theology and Quantum Physics (at least listening and questioning).
• Attending organ recitals and hearing great choirs and orchestras.

What is so selfish about all this, is that Mary Ann has lost the freedom to do so much more than have I.  This morning just opened a bit of sadness about what I might have imagined for myself.  I don’t know all the things that Mary Ann would like to have done.  Once I was asked where I would like to go if I could, and when I mentioned Australia, Mary Ann said she would like to do that too.  We have both talked about never having seen even the Grand Canyon.  We talked about going across Canada on a train, traveling to see the fall colors in New England.  We got to visit England and Northern Europe forty three years ago, and had talked about wanting to go back, especially to England.

I know intellectually, and most often viscerally, that life is lived wherever each of us is.  There is no need to be in some special, exotic place to live life to the full.  The grass certainly is not greener on the other side of the fence, as they say.  It was just a moment of imagined possibilities and some sadness at what will not be.  No matter what any of our circumstances are, all of us have things that are beyond our reach, things we cannot have or experience.  We can either face the loss of those imagined possibilities, grieve their loss and get on with life, or spend our precious moments stuck in self-pity.

I have the privilege of caring for someone I love.  There are so very many who would give anything to have that privilege.  I guess part of living this life to the full is allowing a moment of sadness into it.

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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.

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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.

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Whatever happens today, last night we both got a good quality, long night’s sleep.  Mary Ann is still sleeping.  It is a little after 9:30am.  Because of Veteran’s Day yesterday, Bath Aide Zandra did not come.  She has arranged to come later this morning, so Mary Ann will need to be up soon.

Later: Mary Ann made it up in time to get her meds taken before Zandra arrived. She has had another loose stool (sorry!) which has been happening for many days now.  It raises the question as to whether or not there might be some sort of bug causing some of her problems.  We will wait it out.  So far it is manageable.  i just want to be sure Mary Ann doesn’t get dehydrated.  Checking urine color (sorry again!) should provide evidence one way or the other on that.  We will not involve doctors and hospitals unless there is something clearly demanding that involvement.  If the weight loss continues, I will probably phone the GP’s office for a recommendation of a supplement.  Actually, I will also check with the LBD Spouse Caregivers online group.  They have far more experience with what works than any medical professional.  It seems clear that Mary Ann is just not getting enough calories in to maintain her weight.  Oh how I wish I could painlessly transfer about twenty pounds from me to her. I tried to get her to eat a some spectacularly sweet and tasty and moist cherry (homegrown and canned) and nut coffee cake that Maureen brought yesterday.  She just wouldn’t eat anything.  I, of course, had a huge piece.

After the intestinal activity, Mary Ann decided to lie down again.  She has seemed very tired since getting up this morning.

Gratefully, whatever strain lifting Mary Ann from the floor the other night seems to have been healing on its own.  The physical demands on Caregivers are often substantial and constant.  When I read the online posts of other caregiving spouses, I wonder how on earth they can do it.  Most of them are women, many of them my age or older.  Some of them have husbands who weigh two or three hundred pounds (one is a former heavy weight boxer).  I have no idea how they deal with the demands.  Many have a Hoyer lift to use when necessary.  We have one also, but have needed to use it only a couple of time in the years we have had it.

The physical demands of course include helping Mary Ann up from the floor when she falls.  Our system is not necessarily recommended by physical therapists, but has worked for us for many years.  When she has fallen, I work at sliding her (by pulling on her legs) into an open space where she can lie on her back with her feet toward me and her head away from me.  I put my feet together in front of hers so that they won’t slide, she reaches up and I take hold of her hands.  I rock back, using my weight as a counter balance so that my back is not involved in the process of lifting.

The risks in that approach are mostly to Mary Ann’s arms and shoulders.  Again, since she is not heavy and we have been doing it for so many years, her arms and shoulders seem strong enough to manage.  So far there have been no noticeable side effects to that process.

One of the movements that has created problems for me in the past, is that which is required to turn Mary Ann in bed and move her to the center of the bed so that she doesn’t risk falling off the side of the bed (been there!).  We have single, adjustable beds.  For many years she has been able to climb on all fours on to the bed and flop down one way or another.  She has come very close to flopping right off the edge of the bed on to the floor.  Now, most of the time she simply cannot negotiate that movement.  When she tries, she usually gets stuck on all fours on the bed or with one foot still on the floor, unable to move any farther in the process.

Now, most often she sits on the side of the bed, and if she wants to lie on her left side, facing the television, I cradle her and twist her in a sort of dramatic swinging motion until she is facing the appropriate direction.  Then I lean forward, slide my arms under her and pull her toward me to center her on the bed.  That is the motion that has caused back pain in the past.  Now, I squat down and let my body weight (lot’s more than her body weight) pull her to the center of the bed.

If she wants to lie on her right side, the side of choice for her, again, she sits on the side of the bed.  I let her head down to the pillow and reach with my right hand to lift her feet on to the bed.  Then I travel to the other side of the bed to pull her to the center.  Since the size of the bedroom does not allow much space between the two beds, I often can’t seem to get accomplished the motion using my body weight.  Most often, I slide my arms under and just pull her to the center with my arm muscles, a movement not unlike doing a curl.  Again, that keeps from involving my back in the process.

Now with that image in mind, imagine the nights she is up every few minutes.  One of those two actions of moving her to the center of the bed happens every time she gets up, even just to sit on the side of the bed.  When I watch her on the monitor, if she begins to move at all, I head in to see what she needs.  Sometimes she just needs to be turned from one side to the other, or the covers have gotten twisted out of place.

When we travel, the large beds pretty much preclude my reaching under her to move her.  I can do some manipulating to help position her, but most of the options are simply won’t work.  If I try to move her much, it puts my back at risk.  It won’t help her if I am debilitated.

At the moment, one of the activities that is the most risky for both of us, is the trip to the commode.  I pull her up to a sitting position on the side of the bed and pull the commode close enough so that it only takes a transfer with a few side steps to get her into position, pull down her Pj’s and disposable and get her seated on the commode.  That part is pretty straight forward.

The risky part comes when she is finished.  I pull her up and hold her so that she can use the TP I have handed her.  Most often, she just cannot balance well enough to stand on her own.  I hold her with one arm, feeling her weight against it, knowing that if I let go she would fall back down on to the commode and over the back of it into the wall (does that description ring of experience?).  While holding her with one arm, I have to reach down first to pull up the disposable (we call it a pad), which of course binds since I can only pull from one side, the other hand attached to the arm holding her up.  It is hard for her to remember and then to have the dexterity to move her knees apart enough to get the pad through and pulled up.

Then come the pajama bottoms next.  They have always gathered at her ankles.  Reaching down all the way to the floor with one hand while holding her with the other high enough to be above her center of gravity so that I can keep her from falling challenges my flexibility and strength.  When I think of it, I remove the PJ bottoms so that I can put them on her in a separate action while she is safely sitting on the side of the bed.

The commode trips come very often since one of the problems of a compromised Parasympathetic Autonomic Nervous System is the need to urinate frequently.  The last time Daughter Lisa stayed with Mary Ann over a couple of nights, she shared with me that she was pretty concerned about the risks associated with the night time commode trips.  Both of our children are very concerned about the precarious nature of our situation.  They recognize that it would not take much to mess up our system.  If I am not able to handle Mary Ann, either due to her physical condition or mine, a whole new set of challenges would emerge.  None of us wants even to think about it, although it is hard not to do so.

One other activity has become more challenging since the hospital.  There are more times when she can’t open her eyes, and/or is almost too weak to walk making the short trip from the door to the car pretty difficult.  If this continues, I will set up the aluminum ramps and roll her down the two steps to the door of the car in her transfer chair.  Oddly, steps are far less problem to handle than walking on a level floor to those with Parkinson’s.  Steps usually are her best thing.

While I need cardio-vascular conditioning exercises, I think I am getting plenty of upper body strengthening in this caregiving role.

It is still only mid-day, but this has gotten far too long — as have most of the recent posts.  She is still sleeping.  I hope to get her in the car and to the grocery store this afternoon.  We will see.

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No, I do not subscribe to people having former lifetimes in other times in history.  Last evening I spent some time back in a part of my life that seems a distant memory even though it ended only sixteen months ago.  It is as if my forty years of ministry exists in a former lifetime.  There were feeling swirling around throughout the evening.

The fire happened three years ago.  I got a distressing phone call from the Rector of the Episcopal church, St. David’s, across the intersection from the church of which at that time I was the Senior Pastor.  I called Mary, who was willing and able to come over and stay with Mary Ann freeing me to rush over to check out our church and give Fr. Don some moral support.

It was arson.  The damage was extensive.  It was painful to see such an important place in the hearts and minds of so many people rendered uninhabitable in a few hours.  The vision of an elegant organ console charred and pipes melted, in a heap on the floor beneath the balcony is almost unbearable to those who have sung to that organ, whose spirits have been lifted by it for numbers of years.  I did not go in and see it.  I am remembering from the comments of some who did.

I had the privilege of being able on behalf of our congregation to offer support, a place to hold the first worship on the Sunday following the fire.  I will never forget that worship Service early in the afternoon, after our three morning services were concluded.  The church was packed with the members and friends of St. David’s Congregation.  There was a bond created that day that has since brought continuing joy to both our faith communities. The pattern of worship and the visual style of the worship rooms of the Lutheran and Episcopal traditions are virtually identical.  They felt at home in the worship space and we felt at home with the liturgy they used.

Last evening was three years later to the day in a journey that began in ashes and ended in celebration of an elegant and functional space for a faith community to live out their call to service.

When I arrived, the Nave was full.  There was space in a multipurpose room outfitted to allow us to participate fully in the service, though in a place far from the central worship space.  The feellings swirled.  There were some feelings at first, ones of which I am not proud, feelings that I was now relegated to a place far on the periphery of what had shared with my family a central place in my life.  I am grateful that my feelings moved away from feeling a loss of worth and value, to recognizing what the evening was about.  A community of people had taked a powerful hit and come out stronger that ever.  I got to touch their lives for a moment three years ago.  The night was about them and what had been and would be accomplished through them by the One we both serve.

Later in the evening there were some words of thanks that touched me deeply as Fr. Don acknowledged by name those people and faith communities who had supported them after the fire.

The contrast between the world in which I live now and the world in which I lived sixteen months ago is stark.  It was moving to be back in a liturgical setting with a large number of worshipers gathered, listening to and singing with a pipe organ, instrumentalists and choir producing powerful sounds, singing loudly in the midst of the congregation.  The moment was a poignant one for me as the forty years of ministry with its hopes and intentions and dreams broke into my awareness.  Current circumstances in my life and the needs of the congregation from which I retired have converged to provide a clear separation from my former life in the ministry.

What settled in my mind and heart last night is that my goal has been to impact those I served in a positive way as our lives intersected for a time. Whether or not it is remembered is quite secondary.  My hope is that my ministry had a positive effect on most of those I served in the three parishes and the high school these last four decades.

Now my goal is to make a difference for good in the life of someone I love deeply, even though I don’t always show that love as clearly as I should.  So that I could attend St. David’s new building dedication last night I arranged for a person from Home Instead an agency that provides people trained to do Companion Care.  It will cost between $60 and $70 for that care for Mary Ann, but I felt I needed to be there for my own sake and to provide a formal presence for my former parish. Needless to say, it is not feasible to use agency care very often.  I am grateful to have an income at all in this economy, but a fixed income does demand care in how and when that income is used.

Mary Ann has been up for most of the day today.  Last night did not start out too well, but after a while, she settled and slept soundly.  She has had a reasonably good day.  She ate with only occasional help needed.  She napped in the morning for a couple of hours, but has been awake and sitting up most of the day.  There were two Volunteers here at different times.

She went to bed around 7pm (less than an hour from this writing), and she is awake now watching her beloved NCIS repeat episodes.  It would be a wonderful experience to have a sleep-filled night tonight.  Time will reveal whether or not that comes to be.

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.

It was a night from Hell.  We have plenty of them.  I went to be early in hopes that my presence would help her sleep.  Not so.  She wanted to go home more than once.  Often she would get up and when I asked, admit that she didn’t know why she had gotten up.  Once she woke up and said she had swallowed a snake.  I have no idea from where that thought came.

It went on through the night.  Once there were only seven minutes between times of getting up with some need.  The next one was twelve minutes.  Then came a couple about twenty minutes apart.  I am just tired enough that I went back to sleep during each of those short times, only to be wakened again.  I am not sure what words to say to communicate the level of frustration with that behavior.

One of the times she got up, she agreed to go to the table and eat some applesauce.  We started toward the dining room, and soon it was apparent that she just couldn’t walk well enough to make it there.  I asked her not to move, while I ran a few feet to get the transfer chair.  Of course she fell.  My level of frustration was enough that while I was complaining about her not staying still, instead of patiently working out how to get her off the floor in a way that was safe for me and her, I just picked her up off the floor and seated her in the chair.  Yes, she is only a little over 120 pounds.  No, a small 66 year old man with a family history of back issues should not try to pick up someone from the floor, someone who is not able to help in the process, essentially dead weight.

While it hurts, at the moment (six or seven hours later), it is not excruciating.  I am hoping only minor damage was done and that Advil, ice and a call to Chiropractor Tim will eventually take care of it.

Last night, all I wanted was for her to go to sleep!  She got up early again.  I just insisted that she stay in bed so that I could get another hour of sleep.  Gratefully, she did stay in bed for a while.

When she got up, things were pretty difficult.  I, of course, was not in a very pleasant frame of mind having been up and down every few minutes during most of the night.  She was able to get some of her food eaten by herself.  After breakfast she sat by the television in her PJ’s.  She was in popping up mode.  While at the moment, she is not fainting, her weakness and balance are making her vulnerable to falls.  I got a phone call.  Just as I got into the conversation, she hopped up and headed across the room.  I was frustrated by the timing of it, but after determining it was a bathroom need that precipitated it, I got off the phone and got her into the bathroom and seated.

I have not mentioned this much in the last three days, but there has been intestinal activity verging on diarrhea.  Sunday morning when I was gone, she had some major activity.  That activity required a later cleanup that involved removing the toilet seat, taking it to the large basin I had installed in the basement storage area for things like this, soaking the toilet seat in water with lots of Clorox Bleach, scrubbing the hinges with a toothbrush, rinsing, drying, disinfecting the stool itself and replacing the toilet seat.  This is all taught in Caregiver school.

The good news is that the activity does not come often.  It is just takes some extra effort to keep her and whatever else clean.  We have dealt with much worse in this area.  This morning’s trip to the bathroom was not an easy one.

When she returned to the living room, the popping up continued.  She was almost always getting up to look around at the floor.  I don’t know exactly what she was seeing, but it was some sort of mess that needed cleaning up.  Just going into the kitchen to get a bowl of cereal had to be done in short segments of time, often less than a minute in length so that I could check on her and get her seated again.

I had not yet gotten my morning shower.  I could not trust her to stay seated for the ten to fifteen minutes it takes for me to get ready.  She often agrees that she will stay seated, but pretty much does not do so.  I finally realized that the only way I was going to get ready myself, would be for her to be napping.

There is such an conflict of wants and needs that converge on this simple process.  I want her to stay awake during the day and sleep at night.  I want her to be sleeping even during the day so that I am not dealing with the popping up, the constant needs, the hallucinations, not knowing what will come next.  I should keep her up in the daytime, but when she moves into her need-for-sleep mode, she ends up hanging her head and sleeping in her chair, if not in her bed. There is a sense of relief when she is sleeping during the daytime hours, but a dread for the horribly frustrating nights that come when she can’t sleep then.

I suppose I could sleep during the day while she is sleeping.  I don’t want to shift days and nights for both of us.  I want to be tired enough at bed time that I can go to bed and sleep, if she will allow it.  When she is asleep, I have the freedom to do things that nurture my own well-being both for my own sake and so that I don’t lose the capacity to care for her.  These posts have been long and detailed lately because she is sleeping enough during the day that I am free to write.  These posts have been long and detailed these last days since we are almost entirely homebound now and the task is frustrating enough that I need the outlet of writing these posts as therapy.

Then there is the question, how is Mary Ann dealing with this new place in our experience.  She is stuck with the frustration of not having the mobility and mental acuity she has had, and she is stuck with Grumpy Caregiver who gets frustrated with things she cannot control.  She vacillates between days when she is exhausted and just wants to sleep, and nights when she can’t sleep, wants to be up while the person on whom she depends is scolding her and insisting she stay in bed.  She needs food but often not what is in front of her.  She hates the feeling of needing to be fed but often needs to be fed.  She wants to do things for herself but is constantly being asked to sit down, being reminded that she can’t do them.

I wish I were better at this caregiving task.  On the positive side, I think that most of the time I act in ways that are caring and helpful and affirming of who she is.  I try to treat her with respect, recognizing that my words are not always respectful when I am frustrated with some difficult behavior that seems still to be under her control (probably most often a result of the disease more than her willfulness).  I work hard at keeping her neat, hair washed, dressed appropriately, the house in order, beds made, kitchen in order.  I work very hard at determining what she needs or wants and if it is possible, trying to provide whatever it is.  With that said, in fairness, my assessment is based on who I want to be, not necessarily who I am in her eyes.  In the area of this sort of self-awareness, my propensity to feel guilty when I have been unkind provides some internal metrics.  My self-centeredness drives me to do things that allow me to feel good about myself.  My batting average in that task is probably just that, painfully average.

Back to our day: When med time came after she had been sleeping for a couple of hours, I decided not to make yesterday’s mistake.  After I took her to the bathroom, she stayed up for us to head to Glory Day’s Pizza to bring a couple of slices home for her (lunch and supper).  Her mobility was very poor, and she still would not open her eyes, so the trip out to the car and back afterward was pretty difficult.

She insisted on eating the slice of pizza without help.  She only managed to eat the topping (cheese only) from a little more than half of the one piece.  Then she was done.  After refusing once, she finally agreed to a dish of ice cream.  She is about five pounds lighter on our scale than she was the last time she weighed herself before the trip and the hospital.  She has been eating so little it is no wonder.  When I took her to the bathroom after the pizza, as I was getting her clothes down so that she could sit on the stool, she stopped me, asking what I was doing.  She thought we were still in the dining room.

At about 4:45pm, she wanted to get her bed clothes on and get into bed. She got up again when a paid worker from Home Instead to stay for a few hours while I honored a commitment that was important to me.   She was still up when I returned and went to bed at about 9:30pm.  Let’s hope for some sleep tonight.

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I explained that she wouldn’t be able to get the pills taken if she did not open her eyes.  “Will you open them now so you can take your pills?”  I said.  She replied, “I will when I am damn good and ready!”  Now that is the Mary Ann that Joy, Terry and Cherri remember.  I just laughed and told her that I liked her better when she was sleeping.  She laughed too.

We both had trouble getting to sleep last night.  I suspect a change in the weather and the barometer might have played into it.  I think it was some time after 1am that we finally went to sleep.  Mary Ann woke up very early.  There were trips to the commode, a snack, a period of time she sat in the living room in front of the television while I slept.

While it was not so apparent in the early times she was up, when she got up around 8am, things did not go so well.  I had asked her to stay lying down while I showered so that I would not have to come running at the sound of the thump, evidencing a fall.  When I got out, as usual, she had not stayed put and was in the living room in her transfer chair.

She seemed pretty confused.  Her eyes were tightly shut.  She was talking as if to people.  Earlier she had seen Granddaughter Ashlyn.  This time she was asking Granddaughter Abigail to show her what she was drawing.  They, of course, live ten hours away in Kentucky.  She said a number of things to me that I just couldn’t connect with.  She got irritated with me for not understanding what she was talking about.

I got her to the table for pills and yogurt.  Her eyes remained closed.  I put the pills and water and yogurt in front of her.  She had begun putting her fingers together as if grasping something and putting them to her mouth as if eating.  During our interaction about taking her pills, she seemed to be convinced that she was already taking them, even though there was nothing in her fingers.  I offered to help her take them, and she refused, again, seeming to be convinced that she was taking them.  After the interaction with which I started this post and the laughter that came with it, she was willing to allow me to put the pills in her mouth, a few at a time, give her water and feed her the yogurt.

She kept her eyes closed and would on occasion talk about things she thought she saw, seemingly unaware that her eyes were still closed.  Zandra, her bath aide, came to give her a much needed shower and wash her hair.  I usually wash it at least once between Zandra’s Wednesday and Monday visits.  Mary Ann had been in bed almost the entire time.  When she was up for the couple of hours three or four times in the last three days, I offered many times, but she declined having her hair washed.

Zandra reported a comment Mary Ann made as Zandra was getting her cleaned and dressed.  Mary Ann mentioned how tired she was and how much she was sleeping, and then she told Zandra it was the dementia.  That comment surprised me since I just did not expect that level of self-awareness.  I talk about our situation in front of Mary Ann, using language that matches what I understand to be so.  Trying to spare her by only talking about the facts in whispers away from her hearing seems to me to risk reinforcing mistrust and encouraging paranoia, which is one of the expected symptoms of this strain of dementia (Parkinson’s Disease Dementia, a Dementia with Lewy Bodies – different from Alzheimer’s Dementia).

Mary Ann has identified the probable cause of the daytime sleeping.  That is one of the symptoms of Lewy Body Dementia.  As the disease progresses, often the daytime sleeping increases.  I seem to recall William posting online that Cindy (he calls her Sweet Cindy) is sleeping about 21 of the 24 hours each day.

Mary Ann laid down for a nap right away after Zandra got her cleaned up and dressed.  After a while, one of her pill timers went off.  I always give her the one of two pills while she is lying down, lifting her head, and putting the straw to her mouth.  In the past it has always worked to do the pills that way.  This time, while she was alert enough to indicate that they were still in her mouth, she was not able to suck on the straw.  I had to sit her up completely and put the cup to her mouth to get the water in so that the pills would go down.  Struggling with pills, both this morning and during nap time, is a distressing development, hopefully, a temporary one.

Needless to say, I called and canceled the appointment with the Dentist.  She slept soundly through that entire time.  Trying to force her to get up when she is sleeping as she is now, is not much of an option.  She pretty much can’t be aroused, or if she is, she can’t track mentally, her head hangs down and she can’t get her balance or her feet to move.

I am not ready to accept that our new normal will include constant hallucinations and sleeping entire days at a time, but I do recognize that we will probably need to accept a new normal of some sort, one at a significantly lower level of functioning than about ten days ago.  It is what it is.  We will adapt and find ways to live meaningfully with what we have.

Accepting a new normal does not mean there is no longer any option for improvement.  While the long term trajectory of this disease is not good at all, the short term is very unpredictable.  Dramatic changes for the better can happen just as quickly as changes for the worse.

It is a little after 2:30pm and she is still sleeping.  She was able to take the last round of meds in our usual pattern, while lying down, with me holding up her head.  She managed to use the straw.

As I sat on the deck yesterday, I concluded that I would rather be sitting there with her lying in bed, than be sitting there without her lying there in bed.  If this continues, I don’t know how I will feel a week or a month or a year or an hour from now, but at the moment, there is nothing I want to be doing so much that I would prefer it to having her here with me to care for.  Those of you who have lost a spouse know the profound loneliness that comes.  With Mary Ann, even sleeping, here in the house, there is some loneliness, but not of the deep and painful sort.

I gave Mary Ann her last pill at about 5pm, and she finally got up.  I consider myself a reasonably intelligent person, but I managed to completely blank on an obvious reality.  She needed to have been awakened and taken to the bathroom.  Her pad was full to overflowing.  Zandra had put a daytime pad on, not realizing that she would end up in bed for most of the day.  Needless to say, the sheet and her jeans needed to be washed.  Since I put Chux (a plastic pad with absorbant paper on top) under the bottom sheet to protect the mattress pad, the clean up was not too bad.  At this point, I think we can put away the daytime pads unless things change for the better.

She is not eating much no matter what I offer, up to and including ice cream.  Her ability to walk has diminished dramatically.  She went to bed at about 8pm and has been restless off and on for a while.  It is now about 10:30pm, and for the moment she seems settled.  We will see how the night goes.

Addendum:  She just stirred and decided she wanted to get dressed.  She didn’t want to spend the day in her pajamas.  I explained that it is after 10:30pm, and it would be hard for me if she was up for the night and slept during the day. When I asked what she would do if she got up and dressed, she said she would read.  Finally, she decided she could watch television in the bedroom without getting dressed.  I assured her I would be heading to bed soon.  This may be a long night.

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