This morning when getting up, Mary Ann looked at the cup with a red cozy around it for keeping the ice water cold for as long as possible and thought it was red Jello.  After I described what it actually was, she reminded me about the red Jello that we needed to call the lady about — the lady who brought it.  We needed to find out what to do to thicken it since something had gone wrong when the lady made it and it was runny.  There is, of course, no red Jello, no lady. (Monday’s meal was delivered by a Volunteer and it included a ring of fruit filled Jello including some that was red — it was not runny but solid.)

There was another complex delusion that she talked about in a very matter of fact voice a little later in the morning.  I can’t remember the content, just that it was surprisingly complicated and detailed, with no relationship to any bit or piece of the visible reality in which we live.

It was probably a good thing that there was a Volunteer scheduled while I have the periodic lunch with jimmy, a retired casket salesman who is enjoyable to talk with.  It was a good thing for Mary Ann since Volunteer Jacki brought her violin and serenaded Mary Ann while she was eating her lunch.

I finally got to the grocery after lunch today.  It would have been tough to go another day without more of a couple of things (most importantly, Mary Ann’s disposables).

Mary Ann had been asking to get to the dentist’s office for a cleaning since we missed the last appointment.  This afternoon was her appointment.  As always, the cleaning produces lots of bleeding. There are two reasons for that.  One is that she is taking Plavix and Aspirin, thinning her blood. The other is that I don’t do enough to care for her teeth since she has lost the ability to brush on her own.  The Aides do a little to help that problem, but it would be good if I would stop feeling guilty about not doing mouth care for Mary Ann and just do it.  I have put a Chux pad on her pillow tonight so that any bleeding will not get on the sheet or pillow.

This evening Volunteer Edie came to stay with Mary Ann while I went to another choir practice in preparation for Sunday’s Concert.  I enjoy singing, I made the commitment and will keep it, but I am very ambivalent about it for a number of reasons.  The central reason is that I will miss Granddaughter Chloe’s choir concert in Kansas City.  She is 11 years old and sings in a children’s choir sponsored by the University of Missouri, Kansas City [UMKC].  This is one of two concerts in the year.  Last year our Kids included a combination Mother’s Day/Birthday celebration by taking us and the other Grandparents out for a nice meal/dessert afterward.  We are missing out on all of that because I didn’t put the date on our calendar, and I committed to sing in the concert here before I received an email reminding us of the date. I hate disappointing Chloe as well as our Son Micah and Daughter-in-Law, Becky.

Another reason for my ambivalence is that the more I enjoy the singing in the concert, the more I remember what I am missing in my life at the moment.  Singing takes my mind off everything else.  I am completely immersed in getting the notes and rhythms right, being exactly on pitch, interpreting the phrases appropriately, blending with the other singers.  There is no room for awareness of anything else when that is going on.

When someone you love has to be away for a long time, while you long to have a visit from them, a short visit from them also brings with it the pain of knowing you will have to say good-bye again in a day or two, going through the grieving all over again when they leave.  It is almost easier just not to see them until they can come home and stay.  That is the something of how it feels when I do something that brings me joy and satisfaction, something that has no place in my life at the moment.

With enough effort, I could probably figure out the logistics of singing in some choir or vocal ensemble more regularly. There’s the rub — effort.  Serving as the 24/7 Primary Caregiver for someone who truly needs your help day and night, does not leave the stamina necessary to work out those logistics.  The will and the energy to do what needs to be done to get away at scheduled times is simply no longer there.  The role I have here is big enough to take all that I have to give.  Even at that, Mary Ann could/should receive better care (e.g. oral hygiene).

Sunday will include a mass of conflicting feelings.  While I want her to get out and enjoy the music, there will be complex transportation and timing issues if Mary Ann decides she would rather attend the concert than stay at the house with the person assigned from the Agency (a person Mary Ann knows and likes); there will be the $80-$90 it will cost to cover that care so that I can sing in the concert; there will be disappointment at missing Granddaughter Chloe’s concert and how she and her parents will feel about it; there will be frustration that I am not reading music or singing as well as in the past; there will be exhilaration in doing the singing, joy in hearing and participating in making the music that will reverberate in that building (Lutherans can really sing).  There will be the Spiritual uplift that comes with the organ music and instrumentalists and the singers in the choir, a roomful of people of faith in the congregation expressing that faith in full voice.

Right now it is getting late and all that is too much to think about.  For the moment, I just hope Mary Ann sleeps well tonight, and me too.

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.

Today, we were pretty much home bound.  I had hoped we could get out, but it just didn’t materialize.  As I reflect on the day, I realize how much activity comes to us instead of our going somewhere else to find it.

There were no Volunteers scheduled today, so unlike many Wednesdays, the option to go out on my own was not available.  Mary Ann was tired today and napped at times that kept us here.  We still haven’t made that trip to the grocery I have been trying to get in for a number of days.  Since food has been brought to us recently, we are eating well.  We are on the last package of Mary Ann’s pads (disposable underwear), so tomorrow will have to include a trip to the store.

This morning began with the Spiritual formation group that meets here.  If those folks were not willing or able to come here, I would simply have no Spiritual Formation Group experience regularly. It is both garbage day and lawn maintenance day on Wednesdays in our subdivision.  We have recently incorporated the garbage truck sounds into our spirituality as a metaphor for ridding ourselves of unwanted garbage in our lives — letting go of things that just bog us down and clog our spiritual arteries.

As I was setting up the deck in anticipation of the arrival of the group members, there was an aerial attack on the pair of Mallards in the back yard by another pair.  There was much squawking as the dive bombing hen chased off and flew after the hen already on the tarmac.  The same thing happened with the drakes, with the addition of their fly by almost clipping my ear.

The lawn crew provided weed-eating next to the deck as we had the concluding prayer.  I am sure that we will come up with some sort of metaphoric understanding of to the mowing and weed eating that will incorporate those sights and sounds into our Spiritual Formation.

Again, during the group time Bath Aide Zandra came to the house to provide friendship and help as Mary Ann with through her morning regimen.

By the time the Group was done, Landscaping Tech Sheila had arrived and begun working on our disheveled garden areas.  It is at this point that another venture into bringing beauty into our lives is beginning.  Sheila has presented and then adapted a plan intended to provide more beautiful surroundings at the side and front of the house.  Her original proposal was elegant and well-planned.  Mary Ann and I redirected the project.

Shortly after moving in we had added a berm in the space between our town home and the one next to us in a spot that was in full view when standing at the sink in the kitchen.  The first plan would have returned that spot to sod.  After thinking about it for a while, I realized that we were more concerned about what we see from inside the house than what people see when looking at it from the street.  Now that I am at the sink an inordinate amount of time each day, I am especially in need of having color and activity and growth and change to stimulate my visual cortex.  We can’t get to lots of beautiful places away from the house, so we are bringing them to the house.  That is what all the changes at the back of the house were about.

Stacey came by later today to take the final measurements for the sun room blinds for privacy at night.  That project continues.  Sheila is doing some work in a small back area at the side of the deck to fill out the setting.  The leaves are now out on the trees in behind and beside the waterfall and in the neighbors’ back yards.  The area is now almost completely green and secluded.

Mary Ann’s day was not her best.  She fainted quite a bit this morning and ended up back in bed for at least a couple of hours.  At a late lunch there were a couple of falls without damage to Mary Ann, but our relationship was stressed some in response to them.  From her perspective, she was just doing what she did automatically before the disease took its toll.  From my perspective, she was making choices (twice within minutes of one another) that unnecessarily complicated our lives with substantial clean up and the physical demands of getting her off the floor.

I spent the rest of the time she has been awake sitting a very few feet from her, ready to jump each time she stood up.  Bringing activity and stimulation into our immediate environment helps especially on days like today when even stepping outside is limited.

Hallucinations have continued at various levels of intensity.  We seem to be having less and less of the good, lucid times.  A few minutes ago when I saw her moving in bed, I went in to help her turn so that she is facing the opposite direction.  She said that she guessed we were at the first table.  There were, of course, people here, but she wasn’t sure if they were tables for playing cards or what.

I am not sure what way we are swinging at the moment.  I don’t know if there will be lots of daytime sleeping tomorrow, or much sleeping tonight,. I don’t know if there will be some calm and lucidity tomorrow or hyperactive delusion/hallucination/dreaming going on.  I will find out.

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.

Before you worry, I am not hopelessly burned out.  Yes, I did not ace this quiz.  It would seem to me that it would be necessary for me to be completely delusional and entrenched in a state of denial, not to fail this quiz.  People who are doing full time caregiving with someone suffering from any form of dementia have to face down their limitations and name the feelings as they experience them.  That is the only way to actually stay healthy.  To be perfectly calm and in control would be utter madness.  The quiz does provide food for thought.  The http://www.caring.com/ web site has lots of links to helpful information.  One of those links took me to a list of a handful of tools for survival recommended to those caring for someone with dementia.  I am doing all but one of them — and yes, I am still surviving.  Mary Ann may not be pleased with this sometimes grumpy Caregiver, but we a doing okay.  For those of you who are tracking our days, I will add a paragraph after the quiz.  Here is the quiz:

Quiz: Are You Heading for Caregiver Burnout? By Paula Spencer, Caring.com senior editor

Caregiving can bring many positives into your life — but it’s also hard work, physically and emotionally. If you don’t take enough self-care to replenish yourself, then caregiver stress, anxiety, and depression can build.

And that puts you on the path for caregiver burnout, a syndrome of mental, emotional, and physical depletion. “Caregiving requires a certain amount of selflessness, but it’s important for caregivers to know their limits,” says Caring.com senior medical editor Ken Robbins, a geriatric psychiatrist at the University of Wisconsin who’s also board certified in internal medicine. “Caregivers can become so focused on the person they’re assisting that they neglect their own needs.”

Caregiver burnout interferes with your ability to function. Burnout also raises your risk of chronic depression and other mental and physical ailments, from hypertension and flu to diabetes, stroke, or even premature death. Caregiver burnout is also a leading cause of nursing home placement, when run-down caregivers become too depleted to manage caregiving demands.

What’s your caregiver burnout index? Answer the following 12 questions, add up your score (A = 4 points, B = 3 points, C = 2 points, D = 1 point), and learn lifesaving strategies for managing the unique stress of caregiving.

1. How often do you get a good night’s sleep (seven or more hours)? a. Every day  b. Often  c. Sometimes  d. Seldom or never

2. How often do you keep up with leisure activities that you enjoyed before caregiving? a. Every day  b. Often  c. Sometimes  d. Seldom or never

3. How often do you feel irritable or lose your temper with others? a. Seldom or never  b. Sometimes   c. Often   d. Every day

4. How often do you feel happy? a. Every day  b. Often  c. Sometimes  d. Seldom or never

5. How often do you find it difficult to concentrate? a. Seldom or never  b. Sometimes  c. Often  d. Every day

6. How often do you need a cigarette(s) or more than two cups of coffee to make it through the day? a. Seldom or never  b. Sometimes  c. Often  d. Every day

7. How often do you lack the energy to cook, clean, and take care of everyday basics? a. Seldom or never  b. Sometimes  c. Often  d. Every day

8. How often do you feel hopeless about the future? a. Seldom or never  b. Sometimes  c. Often  d. Every day

9. How often are you able to relax without the use of alcohol or prescription sedatives? a. Every day  b. Often  c. Sometimes  d. Seldom or never

10. How often do you feel overwhelmed by all you have to do? a. Seldom or never  b. Sometimes  c. Often  d. Every day

11. How often has someone criticized your caregiving or suggested you’re burning out? a. Seldom or never  b. Sometimes  c. Often  d. Every day

12. How often do you feel that someone is looking after or caring for you? a. Every day  b. Often  c. Sometimes  d. Seldom or never

How did you score?

This self-test isn’t a scientific or diagnostic measure; it’s meant to help you identify whether your stress level warrants taking steps toward better protecting yourself.

Add up your score. Each A = 4 points, B = 3 points, C = 2 points, D = 1 point.

48-42: Keeping your cool (low burnout risk)

Your heart and head are both in the right place, and your stress-busting reservoirs are full, which helps you to give with grace and good humor. That said, caregiver stress often creeps up without a caregiver realizing it. Protecting your healthful habits is paramount.

What to do: Keep yourself well fueled for caring by making time for yourself every day — at minimum, aim for several five-minute pick-me-ups for caregiver stress. If you’re in a relationship, know that a healthy marriage or other close relationship can be a source of strength; learn how caregiving couples can make it work.

30-41: Feverish (elevated burnout risk)

You’re likely managing caregiver stress reasonably well but falling into a common caregiver trap: Letting yourself sink lower on the daily priority list than is healthy for you. Everyone has an occasional crazy-busy day, but too many of them results in chronic stress — which erodes well-being and places you at risk for depression, colds, and other illnesses.

What to do: Protect your time for self-care by learning seven ways to find more “me” time. On days when you’re feeling stressed, try these five ten-minute pick-me-ups.

18-29: Too hot to handle (high burnout risk)

Your stress level is probably sky-high. You may already be experiencing symptoms of anxiety, depression, compromised immunity, and physical exhaustion that can lead to or complicate chronic diseases such as hypertension, diabetes, heart disease, and chronic depression. It’s critical that you take steps immediately to lower your stress level, ideally through a combination of better self-care, a shared workload, and outlets for your complicated emotions, including talk therapy and support groups.

What to do: In addition to the suggestions in the sections above, learn the five real reasons you’re stressed and how to tame them. Look into respite care options — they’re an important way to give yourself the break you need.

12-17: Toast (already burned out)

It’s a wonder — and a blessing — that you were able to find and take this quiz. You’re running on empty, or is it more like barely running? Although you want to do your best for the person you’re caring for, realize that your own health is at stake — and if you don’t look out for Number One, you won’t be able to help the person or persons in your care.

What to do: You need immediate help. Learn how to tell the difference between the normal stress of caregiving and depression and consult with someone you trust — a doctor, clergyperson, counselor, or therapist, for counseling — and seek out medical assistance. At minimum, you need a physical checkup. You may also benefit from other therapies or from a break from caregiving that’s as short-term as a vacation or as permanent as a relocation of the person in your care.

After she settled, Mary Ann slept well last night, but remained tired today.  I got up in time to get her ready for her Tuesday morning Bible Study.  Even though we remained on course and had plenty of time to get there, she chose not to go today.  I still don’t fully understand why, except that she seemed to be tired all day long. I asked if she meant that she didn’t want to attend any more, but she said it was only today that she didn’t feel like going. She really values the group and seldom misses.

She ate well at all three meals.  She napped for a couple of hours at the most.  She went to bed at a normal time for her.  One of the Hospice Nurses stopped by for the weekly visit.  I was pleased to report that Mary Ann weighed in at 115.5, another pound heavier.  We have been trying to regain some of the weight she lost in recent months.  Since Mary Ann will finish the anti-biotic for her UTI tomorrow, I asked about doing another urine test to be sure this is not a chronic infection.  The nurse said the usual, wait until symptoms occur.  I responded with the challenge that Mary Ann presents no symptoms that differentiate from already ocurring symptoms of her chronic conditions.  I hope the Hospice Doctor will authorize another test some time in the near future to be sure the problem is not a recurring one.  This is another of those times in which the Caregiver has to track medical issues carefully rather than giving away responsibility to anyone else, medical professional 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.

Last night Volunteer Tamara came over and picked up a number of cooking dishes, so that she could bring a supper for us to cook here tonight.  Anybody hungry?  The cooking dish she took was far too small.  When the food came this afternoon, I needed to get the turkey roasting pan from downstairs to hold the roast and vegetables.  The pyrex loaf pan was filled to the brim with a spinach, onions and cheese side dish.  The Jello mold she had picked up from us could not be used since it was barely more than half the size necessary to hold the mult-layered fruit filled molded Jello that came with the meal tonight.  Then there was the ten by thirteen pan filled with a lemon dessert to be cut into many bars.

The veggies went into the oven first at 425 degrees for 30 minutes.  Then the huge boneless pork roast covered in a mustard and herb glaze was placed in the center of the pan with the veggies and that pan was put returned to the oven for another forty-five minutes.  Before that would be done, the spinach dish went into the oven.  At the end of the 45 minutes the roast came out and the veggies went back in for another fifteen minutes as the roast was put in a dish and covered to rest for fifteen minutes before slicing.  During that time the spinach finished cooking and the fresh asparagus she also brought was steamed.

Roast pork, roasted vegetables , a hot spinach and cheese dish, asparagus, a fancy layered fruit Jello and lemon bars all provided a sumptuous feast in our little place tonight.  Had we realized just what magnificent food would be in such quantity, you would all have been invited.  We will have good food for days to come, and I will not have to cook!!!

Mary Ann struggled today to stay alert.  She slept well last night, a very good thing.  She didn’t get up until Bath Aide Zandra came, and she remained very tired during the shower, hair washing and getting dressed routine.  Breakfast was a little more difficult than usual for her to handle.  After some fainting, she ended up back in bed for a about an hour and a half.

After she got up, we headed out to run a couple of errands and bring back some lunch for her.  I most often do leftovers.  For the afternoon, she was again somewhat vulnerable to mild confusion and hallucinations.  I needed to stay close.

As we were finishing supper, Volunteer Tamara returned at the usual evening Volunteer time.  She even did the after dinner clean up as I helped Mary Ann wtih the last of her supper.  That was a wonderful gift.  Then I was able to have some time away this evening (Lowe’s and Barnes and Noble).

Mary Ann has been in bed now for a while, but she is really struggling to get settled. I certainly hope she is able to rest, for both our sakes.

Our Daughter, Lisa, phoned this morning while Mary Ann was with Zandra.  She called to work out plans for a couple of visits to our place, one just after the girls get out of school for the summer and just before they start back toward the end of the summer.  That will give Mary Ann a couple of focal points to keep her interest and attention as the months go by.  The Grandchildren always put things into a healthy perspective, keeping us from seeing our journey only in terms of the two of us.

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.

Are you at least a little curious?  Can you picture just turned 67 year old Pastor Pete Kiteboarding at Lake Perry on a Sunday morning?  This retirement is really something!

An old saying about a snowball’s chance in Hell comes to mind as the caption to that picture.  Since we attend the Evening Service at the church from which I retired, and since the tradition of Volunteers spending time with Mary Ann on Sunday morning still continues to a certain extent, I have opted to use Sunday morning as a mini-retreat time.

Most often I head up to the lake to just sit in the van and read, walk, meditate, watch for birds and other wildlife, and just spend time in the moment, experiencing whatever it brings.

This morning it brought a very chilly and very strong wind.  I opened the window on the van, covered myself with a jacket and just celebrated the power and the sound of the wind.  Last night was a difficult one.  Mary Ann was up at least four to five times an hour until almost 4am.  Gratefully, at least she slept the next four hours.

I was glad that a Volunteer was scheduled this morning.  Volunteer Jan and her husband, Tim, are in our time in life, so we have lots in common.  Jan does a treatment on her finger nails that Mary Ann appreciates. They just enjoy talking.

As soon as Jan came, I headed for the lake.  When I was passing through some fields after the turn off on the way to the dam area, a juvenile American Bald Eagle and an American Crow took off from on of those fields not far from the van as I passed by.  I suspect that the two of them had had some sort of disagreement that landed them there.

Just as I was driving off after a couple of hours there, an Adult American Bald Eagle treated me to a fly over, then circled for a couple of minutes.  In between the two Eagle encounters, I did a lot of devotional reading.  I have needed as much grounding as I could find the last day or so.  The three or four different articles from journal and online Spiritual Formation sources helped draw me back to a better place.  They were all thoughtful and very well-written.  Each helped reframe reality in terms of something that does not depend on external circumstances to create health and well-being.  There was nothing there that I don’t already know.  It is a matter of bringing the truth into a more central place from which it can generate renewal. I was also refreshed by Pastor Jim’s message at the Service tonight.

After a substantial time with the reading and meditation, a car came blasting by me in the parking lot and landed in the corner of the lot.  Two young men jumped out and started unloading cloth bags and containers and equipment and spread it all around the car and in the nearby grass.  It didn’t take long to figure out what was going on.  It probably took a half hour from arriving in the lot to heading into the water.  Only one of the two actually kiteboarded.  He went back and forth a number of times right by the shore.  He was not out on the water for as long a time as they spent getting the equipment ready and putting on all the paraphernalia.

We had a good meal after returning home, Lisa’s meatloaf, baked potatoes and asparagus.  Even though she had been up so much last night, Mary Ann never took a nap today.  She just refused to do so.  She didn’t really even nap with her head down on the table.  The fare on the television was no better than yesterday.  She was up and down quite a bit.  I just hung close to her.

The Evening Service got us out and with people for a bit.  There was a stop at Sheridan’s for Concretes (chocolate with pecans) to take home and eat.  I haven’t yet been able to bring myself to head into Baskin & Robbins after the nasty treatment the last time we were in (see post from April 15).  When we are in the mood for the flavors of ice cream that we favor there, I will not let my anger interfere with the pleasure of enjoying a couple of scoops.  Life is short.

Mary Ann has gone to bed and appears to be sleeping.  I am counting on nothing, however.  One sleepless night does not guarantee that the next one will be a restful one.  Tomorrow evening Volunteer Tamara came by late today to pick up some dishes so that she can bring us a meal tomorrow to put in the oven for supper.  We are looking forward to that treat.

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.

I had little doubt we were on our way back to confusion last night.  The numerous commode trips returned along with a couple of times just sitting up on the side of the bed.  This morning she accused me of lying to her when I disagreed that when the kids were visiting they had been playing with a ball with fire in it. I let that one go without trying too hard to argue against what she was convinced she had seen.

A television report on the news last night must have found a spot in her mind.  The Phelps family blight on Topeka was in the news since an estranged son was in town on a book promotion talking about his difficult childhood before getting away and moving out of town.  Mary Ann asked about one of the Phelps’s talking with me in another room.  She said she had to arouse me from being sort of hypnotized.

She was not in the intense mode that sometimes comes.  I suspect that may be coming next in the cycle.  She was fairly calm, but still getting up often, unsure why or where she wanted to go or what she wanted to do.

Meals were somewhat confusing.  The spatial problems made her insistence on feeding herself pretty tough for me to deal with.  Food was ending up in lots of places, the spoon digging in spots where there was no food to be found. I was not very patient with her today.  She finally did allow me to help her eat the last of her lunch.

Mary Ann was not ready to head out in the car, nor was she interested in taking a nap.  Sometimes she sat with her head down, sometimes not.  The television needed to be on.  Everything that was showing, at least that she would tolerate, seemed to sort of suck the life out of me.  I could hardly stand to be in the room.  I did a lot of pacing.

I have to admit that it was not a good day for me either.  I had a bit of the feeling of a trapped animal, no alternative within reach with enough draw to grab my attention.  I read emails a bit, did some posting to Quicken.  Reading a book simply does not work for me when there are multiple times attention must return to my primary responsibility.  Some people are good at switching into a deep focus quickly when doing tasks. It is not easy for me to do so. If I do get engrossed in something too deeply, I am afraid I will not be there when needed.

At about 5:30pm, just minutes after she had decided to put shoes on so that we could do my errands, Mary Ann decided that she needed a nap.  The good news was that I was able to spend time on the deck reading some devotional material and just experiencing the moment and the environment. I had the video monitor nearby so that I could check on Mary Ann regularly without having to go in the house every few minutes. The bad news is that she did not get supper and the late nap may result in more awake time during the night.  A short time ago I got her up to change into her pajamas, gave her the bed time meds and a container of applesauce. At the moment, she seems to be sleeping.

I am going to try to find the right music and devotional material now to see if I can continue the restoration of peace begun on the deck.  Some days are just harder than others.

It seems odd that a simple day of getting up, doing stuff and going to bed could be so great.  We both had an appropriate number of hours of sleep.  We got up and a reasonable hour.  Mary Ann seemed to be connected to the realities of the day.

Not too long after breakfast, Hospice Aide Sonya came to do Mary Ann’s shower and hair.  It was almost comical to hear Sonya describe it.  Mary Ann had a couple of monumental deposits to make during Sonya’s time with her.  Sonya described in great detail the nature of the deposits.  Her description reminded me of the latest round of Subway commercials.  I will leave the rest to your imagination.  I was grateful on a couple of counts.  One, Sonya got to share the joy of waste management duty, sparing me the task.  Two, it was a much needed basic bodily function that will help Mary Ann function better and feel better.

After that, we watched television together for a while.  I made trips to the computer to read emails.  I also got started on a couple of loads of wash.  Mary Ann ate a pretty substantial lunch, then we headed out in the car.  The local Asparagus is coming on, so we headed to Meier’s market to pick up a few pounds.  I practically live on it when the locally grown crop is available.

After that we headed to Flowers by Bill.  Daughter-in-law Becky made a deal with me, trading the benefit of my cell phone on their account for me getting Mary Ann fresh flowers periodically.  This is the second time I have done it, and both times I have been surprised at the spectacular bouquets I have received.  I have gone in each time and told them what I am doing.  I have asked for whatever they can give me for ten dollars.  Each time they have come out with an arm load of beautiful flowers.  This time there are daisy mums of many different colors (20 open blossoms), carnations (9 open blossoms), alstermaria or peruvian lilies (3 stems each with multiple blossoms on each stem), and a huge yellow rose.  The bouquet has filled the living room with color.

We made an obligatory stop at Dairy Queen, since it is still buy one Blizzard and get the second one for 25 cents week.  I guess today could be designated Flower Day.  Shortly after we got back home, Volunteer Maureen drove up.  She delivered birthday presents for Mary Ann and me.  One is a vining geranium in a hanging basket, providing color just outside our kitchen window (where I now spend an inordinate amount of time each day).  The other is a Gerber Daisy sporting lots of large yellow blossoms.  Maureen remembered that yellow flowers are a favorite of Mary Ann.  That now sits on the deck just outside a glass panel in full view of Mary Ann from her chair.

At supper time I actually made a sort of normal meal – a rarity.  I browned cut up ring sausage in olive oil with lots of onions.  Then a ton of the fresh Asparagus went into a pan to be steamed.  At the market there were some small white potatoes that the owner had kept back for the family last fall.  They had some left and offered them for sale.  I steamed them with salt, dried onions and parsley, drained the water off and covered them with butter (margarine).  I was surprised at how much of the garden flavor they had retained.  Mary Ann apparently approved since she cleaned her plate of every speck of food I put there.  That almost never happens.

After finishing the couple of loads of wash and cleaning the pots and pans from supper, I decided that if there is some sort of certification as a domestic engineer to be had, I am now qualified.

I plan to spend a little time tonight with a newly obtained book on St. Patrick’s Breastplate.  Each chapter is a reflection on one of the phrases in the prayer.  YouTube will provide sung versions of the prayer to give it fuller expression.

I will accept today as the gift of a kind of normal day that most would find boring, to be taken for granted.  To me it is a refreshing encounter with something to be cherished, never to be taken for granted but instead savored.

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.

Mary Ann went to bed at about 9pm last night.  Once she settled, she did not get up until 12:15pm today.  That is fifteen hours straight.  When I went to the bedside commode to clean it today, it had not been used at all.  She was not up even once.

I said in last night’s post that I hoped to get to bed earlier than usual.  I was in bed by 10:30pm (usual time is 12-1am.  I slept in until 8:30am and got my shower done quickly in case Mary Ann needed me.  After getting showered and dressed, since she was still sleeping and there was a quiet rain with soft rumblings of thunder in the distance, I lay back down on the bed.  I also did not get up again until 12:15pm. And people ask what it is like to be retired!!

The rest was very much needed for both of us.  Mary Ann was not so confused today, nor was she in that intense popping up mode that is so difficult for me to deal with.  The symptoms that suggested to me that I might be coming down with something seem to have subsided also.

Mary Ann ate well, only two meals due to getting up so late in the day, but substantial meals — with a large bowl of Ambrosia Salad as a snack in between the meals.  There was some much needed intestinal activity, demanding my participation.  There was some fainting that made that job more difficult, as usual.  She was able to sit up in her chair most of the time when she was in the living room.

Volunteer Deb came over to spend the evening with Mary Ann while I attended a choir rehearsal at the church from which I retired.  I was asked to sing one of the parts in a trio that is part of a larger piece to be sung by a combination of area choirs at a concert concluding a number of months of music activities.  This is the first commitment I have made in a year and a half, other than doctor appointments and that sort of thing.  Mary Ann’s needs at the last minute resulted in my being unable to honor a somewhat similar commitment a year and a half ago. At that time, I concluded that I simply could not commit to anything outside of Mary Ann’s care.

This time I have put in place coverage for Mary Ann that should assure my ability to honor the commitment.  Since my little part in the piece impacts the rest of the choir I can’t in good conscience just bail out at the last minute.  There is a paid Companion Care Aide from a Home Health Care Agency (Home Instead) who is scheduled to be with Mary Ann during the time of the concert itself.  Aide Debbie knows Mary Ann very well from having come each Sunday Morning to be with her for a year or two before I retired.

It was good to be singing again.  I struggled with my own ability to read music tonight as I sat with the choir, trying to sing along.  Singing in choirs and ensembles was the center of my school years.  I got to serve as student conductor of five choirs spread over high school and college years.   After that I sang in two Seminary choirs during those four years of graduate level schooling.  I sang in Schola Cantorum, a semi-professional choir sponsored by the American Guild of Organists for a number of years in Kansas City.  It is hard to accept struggling to read what would have come quickly in earlier years.  When I complained about that to the barista at the coffee shop on my way home tonight, I noted that the last time I had sung regularly was in 1987, when we left Kansas City.  The barista is of college age.  She immediately put into perspective the reason I might be a little rusty.  She was born in 1986.  How on earth did I get so old so fast!

As I was anticipating retirement and full time care of Mary Ann, I had visions of all sorts of things that I might do without 60 hours of commitments to my job as Senior Pastor of a large church filling my week.  I knew from the days and parts of days I was by myself with Mary Ann that it would be very hard to do other things.  The fall after I retired, reality set in.  Because of the vacillations that come with Parkinson’s, along with the addition of the Parkinson’s Disease Dementia, making those vacillations even more dramatic, it soon became clear that I could not commit to anything other than her care.

There are a number of folks in the online group of those in situations similar to mine, who are able to keep a few other activities in their lives on a regular basis.  I made a choice to just do the one thing.  I did it realizing that for me, the stress created by trying to manage regular commitments in addition to Mary Ann’s care was more than I could handle.  I still have no idea how, even with all the Volunteers, I survived the last seven or eight years before I retired.  I doubt that without our Daughter and her family’s move here to help out the last couple of those years I would have made it.  I continue to be grateful for the Staff with which I worked, who seemed to be willing to do anything to help, and a congregation with very understanding leadership, willing to do the same.  It is beyond comprehension that so many in the congregation were willing to give so much of their time and energy to help us in our day to day survival, some still doing so.

As I have said many times before in these posts and elsewhere, while I would not wish this horrible disease on Mary Ann or anyone else, I am in awe of what compassion in action has surrounded us on account of it.  I can only hope that those expressing that compassion have found some meaning and fulfillment in doing so.  We cannot repay what has been given so freely.  We can say thank you.  It is all I know to 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.

It started again last night.  This morning she was up at about 6am and hopelessly confused.  It was 4pm pill time (there never has been such a thing); she needed to make hamburger BBQ; those were the most lucid of the first words this morning.

I got her back in bed so that I could take a shower and get dressed to prepare for the 7:30am Spiritual Formation group that meets at our house.  As soon as I got in the shower, she started yelling for me.  I got out to see what had happened, and she just wanted to know where I was.  The shower is in the bathroom right next to her bed.

Moments later, she needed to go to the bathroom.  She had been to the bathroom just before I went in to take a shower.  It was tough just to get the preparations in for the Wednesday morning group, since she was in her streaming delusion/dream/hallucination mode.

I have been especially tired the last few days.  Today, I have not felt good at all.  Here is where the grateful dimension kicks in.  Volunteer Maureen arrived at 7:25am to spend a couple of hours with Mary Ann.  as always, she had a meal for the freezer, a couple dozen homemade cookies, Blueberry muffins and three very tasty Macaroons.

Maureen gave Mary Ann her yogurt and a muffin and kept her occupied while I spent a couple of very spiritually therapeutic couple of hours in the Spiritual Formation group on the back deck.

Bath Aide Zandra came and took Mary Ann through her morning prep for the day.  Parish Nurse Margaret arrived just as Maureen was due to leave.  Margaret spent the next two hours with Mary Ann while I did some morning chores.  During that time I gave Mary Ann her pills.  Margaret checked Mary Ann’s blood pressure (122/80) and her pulse (60).  I was reassured by the normal pulse after yesterday’s unusually rapid heart beat.   The BP would be great for anyone else, but low for her.  She had already done some fainting this morning.

Mary Ann settled into putting her head down on the table in front of her as she sat in her spot in front of the television.  During this same time, Kristie, who does the monthly cleaning, came and started her work.  Part of my chores on this day is to do the pre-Kristie cleaning up so that she can get to all the places that need cleaning.

I headed off for a short time to squeeze in a couple of errands.  At 11:30am Volunteer Doris arrived.  I got Mary Ann’s lunch.  She could hardly keep her head up.  Her nose was almost touching the plate.  She finally let me help get the food to her mouth.  She did not want to go in and lie down, so I moved her to her spot where she resumed resting with her head down.  I remained at the house, since Doris needs help moving Mary Ann.  After a while I was able to get Mary Ann to lie down in bed for a nap.  I set up the monitor so that Doris could let me know if help was needed.  That allowed me to read emails for a while, do a couple of household tasks and sit for a few moments on the deck.

Then Tom from our pest control service arrived to do his quarterly task.  While he was  here Volunteer Scheduler Mary came to spend two and a half hours with Mary Ann.  She brought Lasagna and bread for supper, along with shortcake, strawberries and ice cream.  There was also a large container of Mary Ann’s favorite, Ambrosia Salad.  During the time Mary was here, we spent some time talking about her ministry as a trained (two years) Lay Assistant at the congregation from which I retired.  I spent some time on the deck and then headed out to sit at Cedarcrest and try to nap while sitting in the van.

After I returned and Mary left, Mary Ann was still sleeping.  Neighbor, good friend and former Parishioner Ann stopped by to see the new sun room and waterfall as well as visit for a bit. After Ann left, I decided to try to nap a bit myself.  That lasted only a few minutes before Mary Ann finally stirred.

It was another very busy Wednesday.  I am profoundly grateful for so many Volunteers spending time with Mary Ann today.  Any times I interacted with her, she was still in the streaming hallucination/delusion/dream mode.  It helped to have others here.  Since she slept so much, it would have been doable, but it was a comfort not to be alone in the task.  I had a chance to enjoy talking with those who came, making my day better.  I need and love times of solitude, but I need human interaction just as much.  The Mallards came by for a while today also, filling my need for entertaining wildlife.

We had the wonderful lasagna meal and dessert.  I spent time just sitting with Mary Ann as she watched an hour or two of television.  Then she decided to go to bed.  After a day of sleeping, I am not sure it will be a very restful night, but I certainly need one.  I absolutely cannot allow whatever it is that is making me feel bad physically develop into anything that interferes with the functioning of our system.  The only power I have is to try to get some rest.  Otherwise, I am fully aware that I have very little to say about what does or does not develop.

I am trying to finish this earlier than usual tonight, so that I can allow more time for rest.  How much rest I actually get will depend on how Mary Ann’s 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.

Mary Ann lay down after lunch for a nap.  The moment she is settled in bed, I start doing tasks inside or outside, confident that she is very likely to sleep for a couple of hours without stirring.  Not so this afternoon.

When I came back in, her eyes were open.  She said that her esophagus hurt and she needed a Tums.  It seemed to be hurting more than usual.  She used the bathroom and had a fainting spell immediately after I put the Tums in her mouth.

The pattern we use is that Tums comes first.  If it does not help, a Nitro pill comes next.  If that hasn’t eliminated the pain in five to ten minutes, another Nitro pill is taken.  She has to be lying down for that since Nitro pills lower blood pressure dramatically.  Since she had just fainted, it was apparent that her BP was already fairly low.

Hospice Nurse Emily came to the door for her weekly visit as we were waiting for the Tums to work.  Mary Ann said that it seemed to be helping.  The new twist was that when Emily checked her oxygen saturation level (98%, very good) and heart rate with the finger monitor, Mary Ann’s heart rate was 111, almost double her normal, which is about 59 or 60.  Nurse Emily took her blood pressure, which was in a reasonable range for Mary Ann, 150/96.  It is always a puzzle that it can be that high just minutes after she has fainted from a drop in blood pressure.  She had stood up and sat down when the fainting happened, but she was lying down when Emily took her BP. Blood pressure usually measures higher when lying down than when sitting or standing for anyone..

Nurse Emily measured her heart rate a second time, and it had come down to 85.  After Emily left, Mary Ann said it was hurting again.  I gave her a nitro pill.  Her heart rate was over a hundred.  After a little less than ten minutes, her chest/esophagus was still hurting.  I gave her a second Nitro pill.  About ten minutes later I checked again.  By that time she said the pain had subsided.  I took her blood pressure at that time and it was 110/50.  As expected, the nitroglycerin had lowered her BP.

The concern, of course, is an unexplained increase in her resting heart rate.  I just pulled out the three pages of information on Cipro.  One of the bullet points under “Other serious side effects of Cipro include” is “Serious heart rhythm changes”.   The next sentence is, “Tell your healthcare provider right away if you have a change in your heart beat (a fast or irregular heartbeat), or if you faint.”  Okay, Nurse Emily was here when the heartrate was almost double her normal.  It did not seem to strike her as significant.  As is so with anyone who has been a Caregiver for a while, I never give away responsibilty for Mary Ann’s medical care.  I will check with Mary Ann periodically tomorrow.  If there is any discomfort I will check her pulse.  If it is racing, I will call Hospice to check with their doctor about how to proceed.  Since Mary Ann’s and our intention is that she not be resuscitated (those words are hard to see appear on this page as I write), we have to be thoughtful in how we proceed.  (Mary Ann has not yet had a chance to sign the DNR form in front of a non-family witness yet — not sure whether procrastination or denial on my part.)

She has been fine the rest of the day and is now in bed, hopefully, for the night.  She went to Bible study this morning and, according to her report, stayed awake.  She had lamented when she first got up this morning that she sleeps so much during the group time, that it seemed fruitless to attend.  She then admitted that getting out with people was good, and that was the only regular time with others she had.

I had an especially good time during the Bible Study,  I had a chance to talk for a time with a cluster of the staff with whom I worked at the church from which I retired.  I realize just how much I miss having those folks to talk with.  When there was some experience or encounter, one of little consequence in the grand scheme of things, it was nice to have some place to report whatever it was.

I headed over to the coffee shop (of course, PT’s) and ran into one of the owners I have known for many years.  As usual, he had just returned from another part of the world where coffee is grown, this time somewhere on the continent of Africa.  He is always entertaining.  I followed that with a visit to the Wild Bird House.  There I could review the experience with the Mallards yesterday and hear some stories about rahabbing ducks.  I didn’t realize that bullfrogs ate ducklings — not a pleasant thought, but interesting to know. Melody rehabs the birds, and Todd is a sort of Renaissance man, who plays in a group and teaches guitar, creates websites from scratch, and builds decks, as well as running the store with Melody. He and I talked deck issues — my bowing crosspiece.

We headed for the store, loaded the car with gas and the back seat with half gallons of ice cream, as well as Mary Ann’s Sesame Chicken dinner.  That is the lunch following which the problems began.  She had the same for supper without any discomfort, at least yet.

This afternoon, while Mary Ann was having problems and then napped, I took on the task of taking up the Snap-Lock mesh flooring in the bathroom to spread out on the driveway, spray with a fungicide, clean with a broom and bathroom cleaner wih bleach in it.  It is  a dreaded job.  The ceramic tile in the bathroom beneath the mesh gets the same treatment.  Tomorrow, Kristie will come and do her monthly cleaning.  This time she will also clean the ceramic tile now that it is uncovered. (The mesh is on the floor to avoid Mary Ann being hurt badly when she falls.)

This evening, Volunteer Jolene came to stay with Mary Ann.  I used the time to do a few things here at the house and then headed to Dairy Queen to take advantage of this week’s special — buy any size Blizzard at full price and get the same or smaller sized second Blizzard for 25 cents.  They are celebrating the 25th birthday of the Blizzard.  We are happy to help them celebrate.  After eating the Blizzards, I headed out again to check on getting a roll shade for the east end of the deck.

It was a full day for both of us. The central concern is Mary Ann’s heart rate.  Since she had a number of silent heart attacks that we missed seven or eight years ago, I do not take this lightly.  Those heart attacks were masked by what we thought was esophagus pain.  It certainly never gets dull around here.

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.