There were dirty pans and bowls and silverware everywhere!! How on earth did I get myself into this! We are not talking about anything that took so much as a shred of culinary skill. Stuffing and Broccoli salad are about as uncomplicated as food preparation can get, but it seemed like a monumental accomplishment to this very reluctant cook.

The plan for Thanksgiving seemed so simple.  There would be nothing resembling cooking.  Ribs, chopped pork and brisket along with a side dish would be picked up from the ToGo counter at the newly opened Famous Dave’s Barbecue nearby.  Our Son, Daughter-in-Law and Granddaughter are coming from Kansas City, an hour away, to join us for a while on Thanksgiving.  We will celebrate Granddaughter Chloe’s eleventh birthday at the same time.  The actual day was a week ago.

When we were at the grocery two days ago getting some odds and ends, Mary Ann’s feet hit the floor bringing the wheelchair to an immediate stop.  By the way, the pain that translates into my forearm (I push the chair with one hand and pull the grocery cart with the other) whenever those rubber soles so much as touch the tile floor is memorable.  The chair stopped in front of the bags of Pepperidge Farm seasoned stuffing 0n display.

I reminded Mary Ann what the plans for Thanksgiving, did not include turkey and trimmings this year.  We went on to get some other food items.  For some reason we had to double back and pass by the same display.  Those feet hit the floor again. We will have ribs and dressing tomorrow.

She wanted dressing, so we will have dressing.  At times like this, Mary Ann just moves back to a time when she was still cooking and needs to prepare food as she did before or early in the Parkinson’s.   Now, I am the one who needs to bring her intentions into a reality.  With Mary Ann in the kitchen, I made the dressing.  There were onions to be chopped along with celery.  They were cooked in butter for a few minutes, followed by the addition of the Pepperidge Farm dressing and liquid (chicken broth in a box) to the pan.  Then an apple needed to be cut into small pieces,  pecans chopped, a few handfuls of raisins, dried Cranberries, cut up apricots and dried blueberries put in the measuring cup.  All of them were added, folded in and the final product was put in baking dish, ready to for the oven tomorrow.

Then came the Broccoli salad prep.  Out of the blue yesterday afternoon, Mary Ann decided we needed to make broccoli salad.  After the stuffing was in the fridge, the broccoli heads needed to be transformed into very small pieces of broccoli.  Another onion, this time chopped into very tiny pieces, more raisins, dried cranberries and dried blueberries were all mixed together.  We happened to have in the freezer the requisite bacon bits to mix in also.  A bottle of salad dressing was added to the mixture, which then went into the fridge to marinate.  Tomorrow a cup of sunflower seeds will be tossed in just before serving.

At this point, with stuffing, broccoli salad, Cranberry celebration from the deli counter at the grocery, a Copper Oven pumpkin pie and a second pumpkin pie from Mary, along with Cool Whip for the pie, we may as well have gotten a smoked turkey, made mashed potatoes and had a traditional Thanksgiving meal. As it is, it will be a very interesting Thanksgiving meal.

I was, of course, ambivalent about tackling even those simply made dishes.  My first reaction to Mary Ann’s suggestions included a twinge of resentment that I would be the one required to do that actual preparation.  I realized it would be a good thing to do that food preparation because Mary Ann would be pleased having the items at the table as the food she brought to the meal.  It would give us some time during which we would both be focused on the preparation task.

Both food items are now prepared and in the fridge.  As the day wore on a supper meal also had to be prepared.  More onions, some bratwurst that had been browned, sliced apples and Bavarian style sauerkraut all cooked together to flavor one another served as supper.

I have no idea how it is possible to end up with so many dirty pans and utensils, cutting boards, bowls, measuring cups, and dishes — and these were simple dishes to make.

When the time came to decide what we would do about the evening Thanksgiving service tonight, Mary Ann had used up her day’s energy.  She was in bed before the Service would have concluded.  In years past we attended the Thanksgiving Day morning service, which was discontinued this year.  It was a smaller group, making it easier for us to negotiate, and it was at a time of day that was easier for us to manage.

Mary Ann did pretty well today.  There was no nap, but she is still having a little trouble settling.  Hopefully she will sleep most of the rest of the night. Tomorrow is a big day.

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 I read an article in Web MD that male caregivers were more likely to leave their wives than female cg to leave their husbands, so kudos to all you guys that have stayed with your wives!!!”

That is a quote from one of those in the Caregiving Spouses group.  It started a stream of posts wondering why that might be so.  In that stream of conversation came the statistic that 40% of Caregivers in general are male.  I am reporting what was written about male Caregivers.  I have no formal verification that what was reported is accurate.

Assuming that more husband Caregivers leave their wives than the other way around, there are some things that I and others mentioned might be part of the reason that is so.  It is hard to talk about this without unfairly stereotyping men and women.  As is the case with most generalizations, it is not true that anyone is bound to be a certain way.  Each of us is unique and needs to be judged on who we are and what we do, not some external sterotype.

With that said, my generation and my parents’ generation grew up with certain assumptions about the roles of men and women that may play into how each does in the caregiving role.  I can remember my Dad standing in the kitchen, the room with the coffee maker, calling out to my Mom, asking for her to get him a cup of coffee.

Dad was not harsh and demanding, it was just the way it was.  Mom wasn’t meek and mild, she stood up for herself, but it was just the way things were done in our household.  By the way, even though I grew up that way, and Mary Ann did as well, I would never have gotten away with such a silly request.

The culture of roles in my experience was that men were often not raised to be caregivers.  Mom did the cooking and cleaning and child-rearing, and Dad went to work, took care of the home repairs and outside maintenance of the house and yard.  He also took care of the finances.  Mom and Dad talked about decisions.  It was not that Dad ruled.  They just each had roles like the ones they grew up with.  Dad was born in 1901 and Mom in 1907.

Dad bowled, golfed, watched boxing and wrestling on television (after we finally got one when I was eleven years old).  Mom did lots of sewing, was active at church, doing what then was perceived to be women’s tasks, most often serving others in some way or teaching children, singing in the choir.

For those men who grew up in that sort of setting, taking care of someone else was moving into pretty foreign territory.  I have to admit, that the caregiving model of behavior has been quite a stretch for me.  I grew up at least as self-centered as most males of my generation (again a risky generalization).  I am flying by the seat of my pants here.

I joke about not doing a good job of providing meals.  While I am a reasonably intelligent person and certainly am capable of cooking a meal, the pattern of what to do and when to do it when cooking is not in that portion of the brain that I call automatic pilot.  It is the place in which the “never forget how to ride a bike” sort of information is kept.  Every time I think about preparing a meal, I have to start from scratch, figuring out every element of the task as if I have never done it before.

Yes, I put colors and whites together, cram the washer full and just switch the dial to cold water only so that everything won’t come out the same color.  Sewing buttons on is a ridiculously challenging task.

I suspect that for some caregiving husbands who bail out on their wives, the difficulty of the tasks, their inexperience with doing them, their selfishness and stereotypical view of who should serve and who should be served, combine to overwhelm them, and they just run away.

It seems to me that whether male or female, there is one simple reality.  We made a promise out of love for one another.  We gave our word.  To run away seems silly.  To where would we run?  Our broken promise would go with us wherever we went.  What exactly would there be to be gained that would be worth having?

I have had the privilege in forty years of ministry to be allowed to see into the most intimate corners of the lives of many hundreds of people.  For the most part I have seen men and women alike who love and care for one another, honor their commitments and keep their word to one another.  It is the way to live with meaning and purpose the lives we have been given.

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 knew it would happen!  It was not a disaster, just inconvenient timing.  In the middle of the prayers in the Evening Service at church tonight, Mary Ann whispered, “I need to go to the bathroom.”  That she did not wait for a more opportune moment to say something made clear to me immediately that we were not talking about a minor matter.

I have seen the dark cloud gathering the last three days as there was virtually no intestinal activity.  I know, are we never happy?  In some recent posts I have mentioned the bit of something close to diarrhea that came after the hospital stay.  That stopped and Mary Ann started eating better.  It was not rocket science to figure out that at some point, three days of eating well and producing little would at some point produce a lot.

At certain points in the prayers tonight, when information on the next petition request was being gathered, I moved to the lobby area, got the wheel chair and returned to the pew.  As soon as the prayers were done, a seemingly interminable length of time, I got Mary Ann into the chair, and we burned rubber taking off to get to the women’s rest room.  Mary (who schedules the Volunteers from church for Mary Ann) was available and willing to guard the door to the restroom.

While we were in the the women’s room together, Mary Ann can’t deal with that particular matter by herself, a number of ladies needed to be turned away.  Gratefully there are rest rooms on the lower level also.  One person was in such need that she headed into the men’s room while Mary watched the door for her.

Actually, I had anticipated this problem earlier in the day. As the dark cloud loomed, I expected two or three days of work getting the job done.  I thought it might begin soon, so I added a package of flushable wipes to the contents of Mary Ann’s purse when we left for church this evening.

The time at church began with a Thanksgiving dinner provided by our Junior Youth program.  The food was great.  The two youth at our table, Trina and Makynna, did a great job of serving. They also participated in the table conversation, noting afterward that the two men at the table seemed to do all the talking.  Eddie and I just have lots of things that we are convinced need to be said!

The meal was followed by the worship service.  I thought that being out for such a long time this afternoon/evening would increase the likelihood of her intestines becoming active.  As inconvenient as was the timing and how long it took, the activity seems to point to a return to more normal and regular production. That is a good thing.

Those of you who are Caregivers can appreciate the observation that intestines rule.  One of the main reasons we make virtually no commitments that can’t pretty easily be cancelled at the last minute is the unknown of when intestinal activity will happen.  One of the earliest posts I wrote last winter described one of the areas of responsibility in a Caregiver’s portfolio as waste management.

I guess the counsel for Caregivers is that we learn to take in stride the duties that  come with the the role of Waste Manager.   We may as well concede that the colon has been crowned king.  Otherwise we will squander precious time being frustrated, grumpy and feeling sorry for ourselves. I suspect we have already spent enough of the few days we have on such self-defeating pursuits.

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 am at a computer in the business center at a LaQuinta motel in Shawnee, Oklahoma.  We put on CD’s of short stories.  They were a little strange, but kept our attention as we traveled.  It is a clear shot to Oklahoma City on an excellent Interstate with minimal traffic.  The Flint Hills remain a spectacular sight.  

The rest area at which we stopped had family bathrooms available.  What a Godsend!  My stress level plummets to nothing when I see that we have a family bathroom available rather than trying to find someone to guard the door to a busy women’s restroom while I help Mary Ann. 

It was wonderful to surprise good friend John by appearing at this door for the birthday open house on the occasion of his sixtieth.  I had sent the return comment card ahead in the mail since I wasn’t sure that this would all work out, and I wanted to mislead them into assuming that we would not be there for the open house.  Packing the car the night before actually worked.  We got off at a reasonable hour and made to his home within minutes of the start time of the open house. 

By the way, we were able to include a stop at the Braum’s Dairy Store in Blackwell, OK.   Mary Ann got two scoops of Butter Pecan — there is none better.   I had a two scoop Hot Fudge Sundae covered with salted pecans!  Just to make clear that we know the ice cream decorum — it was after twelve noon (by minutes).   All is well with the world!

It was a treat to see Peggy and reconnect after thirteen years.   I had the joy of being one of three pastors who officiated in their wedding.  After having such a clergy presence, they are assured of being stuck with one another for many years to come.  Somehow, I think they are okay with that!

A special treat was getting to see and talk with John’s Daughter, Hope.  Since I lived in their home for the first few months of my ministry in Bethany, Oklahoma (an inner suburb of OKC), I got to know Hope and Joel during their early years.  Hope was fiesty!  That, my friends, is an understatement.  She was always intriguing and someone to be reckoned with even as a child.  The energy and intelligence and drive were apparent from the outset.  She has turned into an engaging adult who is realizing all that potential — of which the pinnacle is about as cute and pleasant little twenty-one month old little boy as could be imagined.

There was one surprise for me.  After a time, Peggy came out with what was obviously a Christmas present, wrapped nicely, topped with a flat bow that was covered with dust, as in a well-aged bottle of vintage wine.  It turned out to be a Christmas present that they had gotten for me, wrapped and marked with my name in 1996!  By the time it was ready to be given, we had already moved away.  It just never found its way to me — until now.  It was a nicely framed wedding picture of John and Peggy, looking young and excited as they began a new life together.  The picture, of course included the three clergy who joined forces to set them on the right path.

While the folks who attended were from John and Peggy’s life after we moved away, one blast from the past was visiting with Barry, a fellow pastor — who is the consummate smart aleck.  What great fun to see him again and pick up with the bantering as if no time at all had passed.  Barry lost his wife only months ago after a long and very hard battle with diabetes.  This particular experession of the disease did its worst for almost as long as Mary Ann has been dealing with the Parkinson’s.  Pat lost her sight (for the most part) pretty early on.   Barry also has spent many years doing full time ministry and full time caregiving.  There is an instant connection among those who fully understand the dynamics of caregiving from the Caregiver’s perspective. 

After a stop at a Denny’s, eating too much food packed with unhealthy carbs, we have settled in at the motel.  Shawnee is about an hour closer to Hot Springs than John and Peggy’s home in Edmond.  We will not have to drive in any of the OKC city traffic tomorrow.  The balance of the trip should be pretty manageable — although I would not presume to predict how well tomorrow will go.  I am just grateful that we have made the first day without serious problems. 

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

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

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

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

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

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

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

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

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

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

Embarrassed?  Yes!  But we’ll live.

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It just sounds like complaining, endless whining.  Caregivers are often very boring conversationalists.  Someone says, “Hello, how are you?”  Caregiver responds, “I was up fifteen times last night and eight times the night before.  We slept late in this morning, but I can’t concentrate enough to read anything more than the captions on pictures.  Simple tasks seem overwhelming, and by the way, what is your name, and what is it that you just asked me?”

Last night was a moderately restless night for Mary Ann.  We were up maybe once in each hour during the night for one thing or another.  That pattern is more bearable than the really restless nights when it is multiple times throughout the night.  She got up early this morning, but napped for a couple of hours. It just doesn’t seem to work for me to try to turn on the napping switch and sleep whenever she takes a nap during the day.  Anyway, I relish the time to do the things I can’t do when she is awake and in need of help.

The truth is, there is no way to communicate to anyone who isn’t in the same circumstances just how hard it is to get pretty much of anything done when the sleep patterns are completely erratic, with no ability to plan when there will be sleep and when there won’t be sleep.

While I was on the retreat in Oklahoma, our Daughter Lisa stayed with Mary Ann.  The first of the two nights, Mary Ann was very restless, and Lisa didn’t get much sleep.  Mary Ann was up early as she usually is after a restless night .  The next night, they both slept like a rock and slept late into the morning.  When we talked after I returned, it was apparent that she had a sense of what it is like to have the kind of erratic sleep patterns that are our normal experience.  She, of course has two young children and knows what is it like to have difficult nights and little sleep.

It is just nice to have someone in the circle of support who understands how hard it is to plan and do anything when there is no sleep pattern.  One of the reasons that I enjoy the trip to the Spiritual Renewal Center is that the many hours of uninterrupted sleep seem to return my ability to read and understand what I am reading.  I can’t say that I have read any of the book on Quantum Physics and Theology other than on the Oklahoma Retreats.  I often feel embarrassed at how little I manage to get done each day, and how poor my memory has become.  I am hoping that both are a function of the sleep patterns rather than the disintegration of my brain.

One of the problems the lack of sleep increases in Mary Ann is the intensity of the hallucinations.  I have mentioned that often before.  Today, she got up and headed toward the bedroom.  I asked what she was doing.  She was reluctant to tell me, probably not wanting to hear my opinion on whether or not she should be trying to do what she was planning.  She was going in so that she could sew a button on.  I don’t know what button needed to be sewn on to what.  She had just asked me to help her take off a corduroy shirt of mine that she uses as a warm layer to wear when she is cold.  After I took it off, she hung on to it, rather than letting me put it on the railing post, as usual.  I inferred that she had in her mind that there was a button that needed sewing back on that shirt.  There were no buttons missing.

I did not interfere with her plan.  I decided I would only intervene if she ended up with a needle in her hand and was hurting herself.  I stayed out of the bedroom as much as possible while she got out some balls of thread (probably more for cross stitching or something like that) and handled them for a while. I never saw a needle in her hand.  I just waited it out, helping a little when the thread on a couple of the balls got tangled.

I still don’t know exactly what was in her mind, nor do I know what went through her mind as she finally put the balls of thread back into the drawer and gave up on the plan.  I do know that it is painful to watch her confront the losses she has been suffering for so many years. The losses have been going on for twenty-two years in one way or another, sometimes more slowly than at other times.  Today was one of the times the contrast was especially obvious between the skilled sewing (made our first drapes, has made many quilts) she has done in the past and the inability to so much as get a needle, the thread and sew on a button — as well as the confusion about what was or was not there needing the sewing.

While I am busy complaining about the frustrating sleep patterns, she is busy trying to survive the loss of so much of what brought her joy and satisfaction throughout her life.  I guess I just need to finish this and get to bed so that I will have less to complain about.  So far tonight she has stayed asleep.  We will see how the rest of the night goes.

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

We splurged and ate at Texas Roadhouse.  It is not exactly a gourmet restaurant, but the beef is tasty and prepared well.  Most of all, those sweet potatoes are spectacular.  They have managed to make a veritable health food into a diabetic’s nightmare.  Gratefully, neither Mary Ann nor I have added diabetes to our collection of ailments.  Frankly, given the amount and regularity of our ice cream consumption, I  have no idea why we haven’t both joined the ranks of those with type II Diabetes.

Mary Ann chose the Texas style beans as her second side.  She had white slacks and a turquoise and white top. The combination of twenty-two years of Parkinson’s Disease, a light stroke that effected her right side, and the Parkinson’s Disease Dementia, a Lewy Body Dementia, has made negotiating eating utensils very difficult.  Both the stroke and this particular version of dementia affect the portion of the brain that organizes things in relationship to one another, spatially.  As a result, getting those beans out of that little bowl and into her mouth was no small challenge.

The rule when we go out is that Mary Ann does everything herself, unless it is absolutely impossible for her.  That is her rule.  She will often allow me to cut something into small pieces if it doesn’t come apart easily using only a fork.  She did allow me to cut the meat for her.  I could do that discreetly by reaching across the table.  Feeding her the beans would have been out of the question.

It is interesting to me that she seems not to be at all self-conscious about the food moving out of the dish or plate on to the table, where she chases it to try to get it on to the fork or spoon.  The problem with dexterity and the spatial issues along with her penchant for shifting to the left, with the food then traveling over her lap to get to her mouth, resulted in lots of deposits on her clothes the color of the sauce on the beans.

As soon as we got home, the spray and wash came out and a load of clothes went in.  (I just had to take a dryer break — it is all folded now.) There is seldom a load of wash that doesn’t include a few items sprayed with Spray and Wash.  The Plavix and aspirin combination that Mary Ann takes to help prevent another stroke thins her blood enough that there is often some oral and nasal bleeding at night.  Sheets are almost always sprayed before going in the washer.

I haven’t asked the online group of Caregiver Spouses how many others go through large quantities of Spray and Wash, or something like it.  I suspect that the few hundred in that group contribute a great deal toward the job security of those who manufacture it.

Just as a follow-up to the smoke alarm fiasco on Sunday morning, the security company phoned to say that there will be no charge for the service call coming this Friday.  They determined that our system is so old (almost twenty years), and we have paid for it for so long, that they will upgrade the system at no charge.  That is good news.  I am suspecting that the reason the signal was not received by the dispatcher when the smoke alarm went off was that the system is obsolete.  I am not so naive that I did not check and determine that there will be a contract available that day for me to sign, raising the monthly fee to provide ongoing maintenance.  I should still have the choice that day to decline the offer.  My expectation is that we will still receive the free upgrade.  We will see.

Last night was another restless night.  Here is hoping for a good night’s sleep tonight.

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

At least I can cook in the crock pot! Oh yeah???  I have done it many times before — just brown some meat, put some of that chicken broth in a box in the browning pan, scrape off the good stuff on the bottom of the pan, put it in the crock pot, add whatever else goes with the planned result, and let it all cook a few hours.

Tonight was a neighborhood potluck.  I decided to make the old standby, pork, KC Masterpiece BBQ sauce, and canned beans added a couple of hours before serving.  It tastes great.  Actually, it turned out fine and was eaten by many at the potluck.

However!!!  I sliced a large piece of boneless pork loin inte seven thick slices.  As usual, I heated some olive oil in the pan to brown the meat.  As the meat was browning, there was a little more smoke than usual — not sure why.  You can guess what happened.  The smoke detector that has been a part of our security system that was in the house when we moved in thirteen years ago, the one that is monitored for a monthly charge — the smoke detector activated the horn that is loud enough to wake the dead.  By the way, Mary Ann was still sleeping when this happened.

Unwisely, we never use the system.  I thought the smoke detector didn’t work.  It does!!  In fact, it would not shut up!!  I punched the keypad.  It stopped — for a very few minutes — then started again.  I punched numbers, every set I could remember ever using, but it always came back on after a few minutes.  I opened every door and window I could, started a fan, it still wouldn’t stop.  There was no longer any visible smoke, and it still wouldn’t stop.

I frantically searched through a drawer (about eight inches deep) filled to the top with various instruction and warranty booklets that came with with all sorts of purchases, some we no longer own.  Finally, I came upon something from the security company, something with a phone number.  I called.

The person on the other end was sympathetic.   Together we discovered some good news and some bad news.  It was the same news that was both good and bad.  They had no signal and there were no fire engines that had been dispatched.  I was grateful that there were no fire engines about to come roaring into our quiet subdivision.  I was also distressed to think that were this a real fire, there would be no fire engines coming to put it out.

The dispatcher did not manage to provide what I needed to stop the horn from sounding.  She did transfer me to customer service to talk about getting someone out to determine why they received no signal.  All this while the horn was coming back on, I would run and punch in what I determined was our code, which would stop it for a few minutes.  In the course of the the conversation with the Customer Service tech, she told me how to reset the system after there was no more smoke.  There had been no smoke for about fifteen minutes — just the horn blasting.

At $95 for the first 30 minutes and $25 for each 15 minutes after that, a tech is coming to the house this Friday to determine why there was no signal to the monitoring folks that the smoke detector was going off.

By the way, there were, of course, some needs to be met in my Caregiving role while this was happening.  Mary Ann did as much as she could to allow me to deal with the madness.

When finally it was all over, the food was in the crock pot and we were rushing to get out the door so that we could make it to church (just in the nick of time for the 11:15am service — by the way, there is no 11:15am service — it is at 11am) — I announced to Mary Ann in no uncertain terms that that would be the last time I cook!!!!!!  It will be sandwiches and TV dinners and fast food from now on and that is that!

So that those who read this blog will not now call the authorities to rescue this poor woman from a mad man who will no longer feed her anything but junk food, I will resume my feeble attempts at providing nourishing fare for Mary Ann.  I promise!

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I thawed the roast in the microwave and cut it into two pieces to be sure it thawed completely and would fit into the crockpot.  Then I heated the large pan to brown the meat in olive oil.  As usual, the stove and the floor in front of it glistened with the olive oil splatter before all sides of the the two pieces of beef were browned. 

I put the beef into the crock pot with some red wine and a packet of Onion soup mix and turned it on high.  Then I browned lots of onions and some garlic in the same pan and set it aside to put in the crock pot later. 

After a trip out to Bobo’s Drive-in and an enjoyable visit with the bearer of some chocolate (local source for chocolate is named Audrey), I got to the business of getting the veggies prepared and into the pot.  There were carrots, potatoes, some celery, the onions and garlic from earlier to be added.  After that had cooked a while, just for the heck of it, I tossed in a can of corn and a can of green beans.  I have trouble knowing when to stop when making these sorts of things.  I am of the school that says, whatever the ingredient, if some is good, more is better.  I have trouble with pots that seem consistently to be too small.  I did have enough sense to add a second packet of onion soup mix so that here would be enough seasoning to handle such a large quantity of food. 

The process began around noon.  The last of the veggies went in some time before 5pm.   It was about 7pm when we sat down to eat.   The potatoes still weren’t done.  Yes, I cut them into fairly small pieces so that they would cook more quickly. 

Needless to say, Mary Ann did not eat much of my culinary delight and needed a snack before bed (the usual little Snack Pack container of tapioca pudding).  The hallucinations are now interfering with her settling in and going to sleep.  It may be another long night.

By the way, I turned the crock pot on high after supper, and a couple of hours later it tasted great — to me.  I suspect Mary Ann will not be interested in trying it again.  That is our usual pattern. 

I guess it is a combination of laziness, lack of experience in cooking, and the disincentive of Mary Ann’s pretty narrow range of what is acceptable to her to eat that fuels my failure to launch in providing regular nourishing meals for Mary Ann.  Today is probably the first time in a week or so that I have attempted to do anything other than make sandwiches, take her out, give her what she brought back from the last time we went out, or eat the food that folks sometimes bring over or provide for us. 

I have to admit, that it continues to be a source of shame and embarrassment to me that I have not done better at fulfillling my Caregiving duties in the area of food preparation.  The food that I do prepare tastes good to me.  I love leftovers and eat as much as I can of what we have.  I  am over twenty pounds overweight — a lot for this five foot, six inch frame.  The freezer is full of food that I will eat and Mary Ann will not.  What I make is usually, as was so today, crammed full of veggies and all cooked together.  It is just not appetizing to her. 

Actually, I have no excuse for not doing a better job in this arena.  Our close friends in Kansas City include a husband caring for his wife with ALS.  Charlie does a great job of providing a variety of tasty and healthful meals.  I think Marlene would agree, other than that he doesn’t always listen to her instructions as he is cooking.  I am a reasonably intelligent person; I can read; I can (reluctantly) follow directions — as in recipes.  I have watched and enjoyed lots of cooking shows over the years.   There were Francois Pope (Chicago area), The Galloping Gourmet, The Frugal Gourmet, Justin Wilson — The Cajun Cook, Yan Can Cook, Lidia, plus all the recent and current Food Channel cooks.  You would think I might have absorbed something.  All I seem to have retained from all of it is a voracious appetite.  The cooking looks like fun, but the eating is funner!

Oh well, no one said it would be easy!  As long as there are Glory Day’s pizza by the slice, Long John Silver’s, Bobo’s, McFarland’s, The Classic Bean, Copper Oven, Perkin’s, Jersey Mike’s, New City Cafe, Panera’s, Steak and Shake, Subway (unless they keep showing that annoying commercial with the out of key singing), and a cluster of ice cream and frozen custard places, Mary Ann won’t starve (at least until we run out of money).   

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Should we go to the Neighborhood Brunch or shouldn’t we?  It took at least three days to get the decision made.  The way I finally figured out whether Mary Ann wanted to go or at least was willing to go, was by jumping up to help her when she got up from her chair and headed out to the kitchen.  She was looking for the recipe for the Blueberry French Toast that has always been a hit at the Brunch and wherever else we have taken it.  She finally signaled her wishes by her actions.  it was 5pm in the afternoon of the day before the Brunch.  We had only a few of the necessary ingredients in the house.

Getting decisions made is an unbelievably difficult challenge in our household.  We have regularly played the “What do you want to do?” game.  We almost always played that game when it was time to go out to eat. It is a miracle that we ever actually got to a restaurant and ate.  The process of deciding where to eat always went the same way unless some external circumstances led both of us to the same idea immediately.  If it was time to eat and we happened to be near Bobo’s Diner, the decision was easy – still is.  The vast majority of times it went this way, I began listing every restaurant that I could think of until I named one that brought to Mary Ann’s mind a particular menu item for which she was in the mood. Sometimes that went on so long I started heading home out of frustration.

Some things have changed as the disease process has taken its toll on Mary Ann.  The Parkinson’s has softened her voice and slowed the mental process, making it difficult to respond to questions.  The Parkinson’s Disease Dementia (a Dementia with Lewy Bodies) has stolen even more decision-making ability.  Sometimes it is almost impossible for Mary Ann to get hold of what she is thinking.

Imagine trying to play the “What do you want to do?” game when the person being asked that question has absolutely no answer, no idea how to answer.  Please understand, that does not mean there has been any change in the wanting of certain things.   It is just next to impossible for them to locate that want, name it, and get the words out of their mouth.

As with most of us who are doing full time caregiving, much of the time I can read Mary Ann like a book.  I may very well have enabled her lack of responsiveness by figuring out what she wants without her having to say anything out loud.  We have been at this relationship for well over four decades.  I can usually figure out what she wants by analyzing the circumstances at a given moment and remembering what she has wanted a thousand other times in those circumstances.

Making a decision on anything other than routine matters where circumstances can easily be read is often a protracted and painful process.  I asked about the Neighborhood Brunch occasionally for a couple of weeks.  There was no reply, nor were there any non-verbals that gave a clue as to her wishes.

I suppose the question could be asked of me, why bother to include Mary Ann in the choosing.  Why not just make the decision and go with it.  For one thing, that is not how I function. Ask those poor folks who worked with me in a Team Ministry.  Being inclusive of everyone in the process of making a decision at work often makes for a better decsion and more likelihood that all the participants will be on board when it comes time to act on the decision.  On the other side of it, I know there were times when we processed things too long and everyone wished as the Senior Pastor, I would just make the decision so that everyone could get on with doing what we were talking about.  As I often admitted, I just wanted to work it out so that I wouldn’t get the blame if the decision turned out to be flawed.

Why include Mary Ann in the decision-making?  She deserves to have something to say about her own life.  Because of the Parkinson’s and the cluster of additional health issues, she has had stolen from her any shred of control of her own life.  She has always been strong-willed, so running roughshod over her wishes would not work.  She would figure out a way to stand up for herself, even if she might take a passive-aggressive approach.

I work very hard at trying to give her the chance to decide what we will do.  I usually try to guess what she wants and then frame the question about what to do by saying “would you like to [insert what I have guessed she wants to do].”  I often have to follow it with “just say yes or no?”

As the Satuday of the Brunch got closer, I became more specific about the options.  If we went to the Brunch it would mean having the hassle of making the Blueberry French Toast, but then we would have the valuable social interaction.  I probably said it in a way that would have revealed to the attentive that I was not much interested in the task of making the BFT.  For the last two days before, I tried the “do you want to go, yes or no?” approach a number of times.  There was no response, nor where there any non-verbals I could read.

By Friday afternoon, I was specific that if we were going to go, we would need to go to the store soon.  The recipe demands that the BFT sit overnight before baking.  Still there was no response.  I don’t remember how long after that attempt at getting a response she got up with that restlessness that indicates there is something she intends to do other than the usual.  It only took me seconds to put two and two together.  She was looking for the recipe.  We were going.

I have to admit that there is a part of me that resents that she had not given any indication sooner and that her decision meant I would need to get us to the store, come home, make the Blueberry French Toast while trying to include Mary Ann in the process of making it (harder than doing it myself).  I dreaded the fact that I would need to get up at least two hours earlier than usual to get myself cleaned up, get the dish out of the fridge to stand for thirty minutes, cook it covered for thirty minutes, uncovered for another thirty minutes, make the blueberry sauce that needed to be cooked just the right length so that it could be poured over the casserole just before serving it.  During that same time Mary Ann needed to be aroused, dressed and fed so that we could make it to the Brunch on time.

When all was said and done, the Brunch went well, the Blueberry French Toast was a hit (the huge pan came home completely empty) and we enjoyed the morning.

Making decisions is terribly difficult to do, but Mary Ann deserves to be a part of them.  As frustrating as the process can be, it is important that Caregivers and Care-receivers make decisions together.

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.

Added bonus:
BLUEBERRY FRENCH TOAST

12 slices white bread
2 8oz. cream cheese
l c blueberries / 12 eggs /2 c. milk
1/3 c. maple syrup

Sauce: l c. sugar l c. water
2 T cornstarch l c. blueberries
l T butter

Cut bread into l inch pieces. PLACE 1/2 in buttered 13 x 9 baking dish. Cut cream cheese into l inch cubes. Place over bread. Top with berries and rest of bread. Beat eggs. Add milk and syrup. Pour over bread mixture and chill overnight. Remove from fridge 30 minutes before baking. Cover and bake at 350 for 30 minutes.. UNCOVER and
bake for 30 minutes or until set.
SAUCE: in a saucepan combine sugar, butter, and cornstarch add water. BOIL for 3 minutes over med. heat stirring constantly. STIR IN BERRIES and reduce heat. Simmer for 8-10 minutes. Pour over French toast before serving

Mary Ann Tremain
Faith Lutheran Cookbook 6/25/02