May 5, 2010

Clenching Teeth — Bad Idea

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Stress sometimes produces odd markers.  My stress marker apparently is clenching my teeth.  It is a bad idea.  I ended up at the Dentist’s office while Mary Ann was in her Tuesday morning group.  The good news is that the pain is apparently not signaling an abscess.  No root canal!  Yeah!  The bad news is that I am wearing though the surface of my teeth, even some crowns.  It does not bode well for the future.  There are likely to be expensive sittings in a dental chair coming at some time.  For now, a night guard is the weapon of choice for trying to stave off major work for as long as possible.

While there are some obvious stress producers in our current situation, I suspect the problem would be the same no matter what the source of the stress.  The threat of many thousands of out of pocket dental expenses is a strong motivation to use the night guard regularly.

Today was a better day for Mary Ann.  She slept very well last night.  She was alert and participated in her Tuesday morning group.  Volunteer Scheduler Mary took us out to Boss Hawg’s Barbecue for lunch in honor of Mary Ann’s (5/15) and my (4/14) birthdays.  What a treat!  Mary Ann ate lots.  She needed help after a while, but she stuck with it until the food was almost all gone.

Hospice Nurse Emily came by this afternoon.  Mary Ann’s vitals were all fine, but her blood pressure was low this time, 108/64.  Emily commented that she never knows where Mary Ann’s BP will be when she takes it.  Mary Ann is always an interesting and entertaining patient to any health professional who takes care of her.  She is never boring!  I can’t remember what exactly it was she said when getting up from the toilet stool once today, but it was one of her smart aleck comments that brought laughter from both of us.

I talked with the Hospice Nurse about my considering returning the Midodrine to the meds to see if our quality of life might return to something closer to what we had six months ago when Mary Ann took it daily.  It is the med that raises her BP to levels that are not good in the long run.  Since quality is more important to both of us than quantity of days it seems like a reasonable option.  It is within the range of options acceptable to the Cardiologist.  When I talked with Mary Ann about it later on in the day, she said that she didn’t really want to change anything.  She feels it is all working well now.  Looking at it from my direction, it doesn’t seem that it is working well.  On the other hand, it is her body into which the meds are going.  For now, I won’t press the issue.

There were a couple of deck times today and another chapter in the book on St. Patrick’s morning prayer.  This chapter, “Christ Before Me” as well as the one I read yesterday, “Christ Behind Me” have both been thought provoking and comforting.  Maybe more deck time and devotional reading will help reduce the teeth clenching.

Parish Nurse Margaret stopped by with some fresh asparagus from her garden, which I added to the bratwurst and sweet potato fries we had for supper.

All in all, today the scales balanced in favor of clarity and good communication.  There were some times of confusion, but they were less prominent than the last couple of days.  Mary Ann has been especially restless tonight.  It is very late and she still seems to be awake and moving around.  While that does not bode well for tomorrow, tomorrow will speak for itself.

 

May 1, 2010

Still Sleeping

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It is almost 11am, Saturday morning, and Mary Ann is still sleeping.  I wrote no post last night since I was especially tired.  The two nights before last were not wonderful.

Yesterday, Mary Ann was again very tired all day long.  The hallucinations/delusions/dreams mixed with reality continue. Yesterday morning she asked me to check on the towels.  I confirmed that she meant the towels for the people she is convinced are living downstairs.  She admits that she thinks I am lying when I say that they are not here at the house.  I offered to take her downstairs.  I think the bed is not made but has the clean sheets folded on it.  The problem is, not only would it be almost impossible at this point to get her down and up the stairs by myself, but she would probably just conclude that they cleared out for the moment just to fool her.

We did not get out yesterday except to make a quick circuit to get my coffee and a take-out luncheon Lasagna from Olive Garden for Mary Ann.  Later in the day she opted not to go out for ice cream but eat what we have from the store here at the house.

I don’t know if this is actually a decline or just temporary, but the confusion becoming a routine part of each day, increased fatigue, and the reluctance to go out is a little unsettling.  Maybe it is still the Urinary Tract Infection.  She is done with the ten days of anti-biotics.  We will be getting a specimen for the lab when she gets up to see if it is actually gone.

…Mary Ann is up now.  She got up at about 11:15am.  She ate a usual breakfast and then sat for a while, pretty much dozing most of the time.  Understandably she did not want to lie back down even though her head was hanging.

When I asked about lunch, she said she did want to go out.  I was apprehensive since she appeared so tired, but it seemed worth a try just to get both of us out of the house.  When she stood up to put on a light jacket, she ended up having a major fainting spell.  After she came back around, she still wanted to go out.  She, of course, has little awareness of the fainting.  I rolled her to the door to the garage and she walked down the steps as usual (she handles steps better than flat surfaces) into the garage.  Before I could get her into the car, she had another major fainting spell.  I have four folding chairs lining the garage wall along her side of the car, so that one is always in reach.  I grabbed one and got her in it before she went down to the floor.  I have put the colorful foam playroom squares along her side of the van so that if she does fall, the damage will be minimized.

I finally got her into the car, and we made our way to Perkins.  Since she was in the wheelchair except when transferring from the car and into the chair in the restaurant, she did not faint during that outing.  She managed to eat a few pieces of pancake on her own, but then she allowed me to help her eat more after ceasing to be able to get them speared and into her mouth.

When I got her out of the car back at the house, she had another major fainting spell.  After she was awake and able to stay seated in the folding chair by herself, I prepared the portable ramp into the house and got the transfer chair.  That way i was able to get her into the house.  As always, she needed a trip to the bathroom.  She fainted again there, but this time it was not a major outage.  By the way, when I refer to a fainting spell as a major one, it means after jerking and stiffening for a few moments, she goes limp.  Then she remains out for a minute or two (rarely it is many minutes up to a record fifteen).  During that time she is snoring as if having a spell of apnea, sort of gasping for breath, and saliva comes out of her mouth (my sleeve usually gets wet since I put my arm across her chest to keep her from falling out of the chair).   Gratefully, she is completely unaware of all of that and remembers nothing of it.  She sometimes seems to think I am making all of that up, that she does not actually faint.  Since she has no conscious awareness of the fainting spells, she has no natural reticence to getting up and heading out no matter how many times she has fainted.

When Hospice Nurse Emily came to pick up the specimen for the UTI lab test, I asked her to take Mary Ann’s vital signs since Mary Ann had appeared to have labored breathing and admitted to having some difficulty with her breathing.  Her vitals were fine.  The blood pressure reading was 158/92.  That reading came after there had been some fainting spells and before we headed out for lunch, experiencing a number of major spells.  That reading would be high for anyone under normal circumstances.

Here is my dilemma.  Do I add back into her medication regimen the Midodrine that raises her blood pressure all the time.  When she is on the medication, it is as high as 220/120 in the mornings and goes even  higher sometimes when measured at doctor’s appointments.  Many months ago, when she was taking a full therapeutic dose of Midodrine, we were able to do much more in the way of traveling, eating out, participating in activities.  We have long ago decided that the quality of our time is more important than the length of it.

As I write, I would like to be attending the wedding of the daughter of a family of which we think very highly.  Her Mom was on the Staff at the church from which I retired.  I have enjoyed their kids and value them as friends as well as former parishioners.  If that is not enough, one of the Pastors doing the wedding is a young man whom I watched grow at that church, and had the privilege of Ordaining into the ministry not long ago.  Lot’s of folks whom I came to know and love during the twelve and a half years as part of their lives will be gathered there.  I take some comfort in the fact that I am at the moment doing exactly what Katie and Jacob are  promising to do, what I promised to do over forty-four years ago.

Tomorrow is the day of the concert in which I will sing as part of a trio in a larger choral piece.  It would probably be a good idea to get a good night’s sleep tonight.  Mary Ann is in bed and appears to be sleeping at the moment.  Here is hoping that she sleeps well throughout the night.

 

April 23, 2010

Refreshingly Normal Day

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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.

 

April 22, 2010

Slept for Many Hours

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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.

 

April 21, 2010

New Twist – Hopefully Nothing Significant

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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.

 

April 20, 2010

Infection Diagnosed

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I have to wonder how long this has been going on.  I wondered about it right after coming home from the hospital last November.  There were none of the usual symptoms that were different from the symptoms of the problems already diagnosed and being treated.  It seems unlikely to me that such an infection could have been going on since November, although there is a chronic version of this diagnosis.

Hospice Nurse Emily phoned shortly after lunch time today to report that Mary Ann’s urine had tested positive for a Urinary Tract Infection [UTI].  In fact it is apparently a fairly serious one.  She reported that the doctor had insisted that Mary Ann manage to get in both the morning and evening doses yet today.  We have now done so and Mary Ann is in bed.

The medication is an anti-biotic called Cipro.  It is a strong anti-biotic whose sheets of warnings and side-effects (three pages of small print) read like a Stephen King novel.  The good news is that the Hospice doctor has a current list of all Mary Ann’s meds and a chart that includes all her medical problems.  The Hospice Staff have regular Team meetings on each patient.  It is a fairly small Hospice organization, serving only about thirty patients.  We regularly get a copy of the Team meetings.  Each report includes hand-written notes by each member of the team, including the doctor.

It certainly is a challenge to discern the signs of a UTI when every one of them matches something that is normal for someone with Parkinson’s Disease, Heart Disease, Parkinson’s Disease Dementia (a Dementia with Lewy Bodies), Hypertension, Orthostatic Hypotension, Chronic Kidney Disease, Hypothyroidsim, Urinary and Bowel Incontinence, a stroke victim who has also had a life-threatening bout with Pneumonia.

Here is an interesting item on the list of those symptoms that are often indicators of a Urinary Tract Infection:  “Mental changes or confusion (in the elderly, these symptoms often are the only signs of a UTI).”  Imagine trying to catch that symptom in someone with a Lewy Body Dementia that has as its central symptom, mental confusion that comes and goes.

On the Medline Plus web site from which I got the information in this post there is a list circumstances that increase the likelihood of getting a UTI.

The following also increase your chances of developing a UTI:

  • Diabetes
  • Advanced age (especially people in nursing homes)
  • Problems emptying your bladder (urinary retention) because of brain or nerve disorders
  • A tube called a urinary catheter inserted into your urinary tract
  • Bowel Incontinence
  • Enlarged Prostate, narrow urethra, or anything that blocks the flow of urine
  • Kidney stones
  • Staying still (immobile) for a long period of time (for example, while you are recovering from a hip fracture)
  • Pregnancy

Mary Ann is not pregnant, does not have a prostate gland or kidney stones, nor is she diabetic, but all the rest fit to one degree or another.

I will admit that this diagnosis seems like good news in the sense that it provides a glimmer of hope for some positive change.  Mary Ann declined pretty dramatically after her hospital stay (during which a catheter was used).  It would be wonderful to be surprised by improvements coming with progress in treating the UTI.

Mary Ann (and I) got a pretty good night’s sleep last night.  She seemed to be doing somewhat better today but still had some confusion periodically.  There was a little more of the fainting and bowel activity.  She had a nap of a couple of hours during the mid-day.

We had a special treat today.  This afternoon Pastor Mike and Judy came to visit for a few hours.  They are warm and caring, as well as strong and intelligent people who have made their mark for great good in a central city area in Kansas City, Kansas that has had all the struggles that often come with older city neighborhoods.  I have tremendous respect for them as they have stayed engaged with and present in that community for decades.  Without fanfare or tangible rewards they have continued to serve in creative ways people sometimes gasping for air just to keep from drowning in a sea of failed attempts at trying to get by on their own.

We have known Mike and Judy since the early 1970’s.  I was a few years ahead of Mike at the Seminary we both attended in St. Louis.  Mary Ann and I have  listed Mike as the requested preacher at our funerals.  He and Judy have known Mary Ann since before the Parkinson’s.  As well as the personal fondness we have for them, they share with us an understanding of church that is deeply rooted in some core faith issues.  We have great conversations.  Judy especially made a point of talking with Mary Ann one on one, so that Mary Ann’s thoughts and words were not lost in the energetic talking of three others.

After spending time at the dining room table talking with Mike and Judy, we moved on to the deck.  It was a glorious day here, about 70 degrees and abundant sunshine.  As we sat on the deck, the pair of Mallard Ducks wandered back and forth, in and out of the waterfall, munching at the ground level platform feeder a few times.  They just sort of hung out with us, maybe twenty feet away.  The birds were singing their spring songs probably meant to impress some potential or current mate.  At one point a black Grackle (with that shiny deep blue head), Blue Jay, Cardinal and bright yellow Goldfinch were in view at the same time in the branches or on the ground in the immediate area.  A couple of Robins were nearby also, as well as the Mallards.  It always strikes me that colors no designer in his/her right mind would put together in the same space, work very well when in proximity in a natural setting. It would seem there might be some other artist at work weaving colors together.

Yesterday, our system here seemed on the verge of becoming impossible to sustain.  A good night’s sleep, some time during Mary Ann’s nap to get a few sort of recreational chores done (filling bird feeders, more weeding in the waterfall area), relaxed time visiting with good friends, has pulled us from the verge of impossible back to possible.  Since we live in a fairly small space between possible and impossible, I will not venture a guess as to where we will be tomorrow.  We will deal with that when tomorrow becomes today. Speaking of which — it is time to go to bed.

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.

 

April 19, 2010

Wasted and Worn Out.

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
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One night and day like this are about all I am up to.  Last night the hallucinations fired up.  When I say that we got less than half a night’s sleep, I mean that if the night were to be sliced down the middle, lengthwise, there was sleep that totaled less than half the available time.  In other words, there was about twenty minutes out of every hour that may have included some sleep, at least for me.  As I write that, I suspect that I am exaggerating some.  I doubt there there was twenty minutes in any hour that was not spent trying to explain away hallucinations and convince her to lie down and go to sleep.

Once after I had pointed to her quilt on the wall and the family pictures on two other walls in the bedroom.  She stared me in the face and said in a very belligerent tone: “All right, now just take me home!”   At one point she was crying uncontrollably during a dream.  Almost immediately after I hit the publish button on last night’s post, she got up and then fell down in the corner of the bedroom. When I got there she was talking utter gibberish in a loud voice like the sounds she makes sometimes when she is starting to faint.  They are awful sounds.  They may have been some sort of wailing that was part of a dream that was going on when she fell.  I was afraid she had had a stroke, but when I got her up, she seemed to have awakened from whatever form of dream she was having.  She was still not at all lucid.

After having clear and healthy looking urine all day, up until the time she went to bed, she started showing some blood in her urine. I phoned Hospice, grateful to have someone to call.  The Hospice Nurse said she would bring over a kit to gather urine so that she could be tested for a urinary tract infection [UTI].  We agreed that it would be okay to wait until morning to bring it over.

After an entire night of getting up and down again and again, trying to get her to settle, she got up very early.  I had set the alarm early so that I could get a shower in before the nurse came.  Mary Ann was up before the alarm went off.  She was in hallucination streaming mode.  I simply cannot endure that for very long.  She hops up immediately after sitting down, needing to go somewhere, not always sure where.  She was in fainting mode, so each time she insisted on getting up and walking somewhere, she ended up on the floor.  I was with her each time, so I had to let her down to the floor, sometimes dead weight, so that she would not hurt herself.  Then I got the transfer chair beside her, pulled her up on to her feet and back into the chair.  As soon as I moved her back to her spot, she would pop up and the procedure would start again.  I could not begin to count how many times that happened.

I did manage to get her fed, no small task since she was hallucinating and paying attention or talking to whatever or whomever she was seeing.  I am utterly helpless to do anything about problems created by people or objects that have no corporeal presence.  They just don’t exist outside of Mary Ann’s plaque laden brain cells.  Whether or not they are real, they are so to Mary Ann.  They elicit the full range of feeling and frustration and fear that they would if they actually were real.

I had to sit two or three feet away from her every minute, or she would get up and move someplace where she could be hurt.  I could not so much as get in a fifteen minute shower.  The Hospice Nurse had to be late, since a client had died and she had been up with them all night.  I followed Mary Ann around, picking her up again and again for two or three hours, until just minutes before Nurse Emily arrived when Mary Ann simply crashed and had to go back to bed.

Nurse Emily dropped off the urine gathering kit for me to use later, but she was also willing to stay for fifteen minutes extra so that I could take a shower.  During that time Volunteer Edie came to stay with Mary Ann.  As always Edie brought lunch. This time it was a favorite of both Mary Ann and me, a Greek style meatball and veggie soup.  Mary Ann slept about three hours, beginning before Nurse Emily and Volunteer Edie arrived and ending just after Edie left.

We ate lunch, and afterward, Mary Ann started the same pattern as the one that had almost driven me crazy (short drive) before her nap.  A number of times when she popped up in the afternoon, she was irritated that I didn’t get her into the car to go to the Evening Service at Church.  The service is at 6pm (ten minutes away from our house) and she started popping up around 2:30pm.

The afternoon pop-ups included four or five of them beginning a trek to the bathroom, where the fainting and intestinal production ending up in the wrong place happened a number of times.

We did manage to get to the Evening Service, but I was wasted and worn out, and Mary Ann was not able to participate much in the service. There is enough structure to the service, that we could at least make it through the service.  Church and supper did not change the pattern.  We ate supper, Mary Ann sticking her spoon in the Pepsi and her napkin in the soup, often seeming to try to eat the napkin with the spoon.  Sleepless nights wreak havoc on her dementia.

I won’t deny that I had been hoping all afternoon and evening that she would go to sleep again.  She did not.  Now finally she is in bed.  She has been continuing to pop up and down, sometimes thinking it is morning.  I have had to talk her out of getting up and dressed.  I don’t know that I have another night like the last one in me.  I guess I don’t have a choice.

What I have written may make no sense, I am so wasted that my eyes keep shutting.  I need to get to bed. (Too tired to edit. It goes out errors and all.)  [I am adding this sentence to indicate that I have now edited this post, and Mary Ann and I did get some sleep last night.]

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.

 

April 17, 2010

Good Days Come to an End.

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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The short string of good days ended, beginning last night.  The remote control sitting two feet from her was a candy bar.  That and some other comments hinted at what was coming.  Last night she was up at least once an hour throughout the night.  She got up early this morning.

As I sat next to her in the living room she spoke with a very rational and clear voice asking about some things.  She asked if the blond young man who had come by was Daughter Lisa’s boy friend.  There was no blond young man, and Lisa, husband Denis and the girls in Kentucky are absolutely secure.  No amount of talking by me or Lisa has managed to remove that from her repertoire of hallucination/dreams/delusions.

She wanted to be sure to get the Tom Mix Western back to the library.  We haven’t been to the library and certainly have never taken out a Tom Mix book.  He was a western hero in the movies from before Mary Ann and I were born.

She wanted to make a list of things to send to the kids, all she could think of was a blue tennis shoe for a baby she concluded they had left here.  She looked outside that decided that there had been an avalanch.  I asked if she was referring to the waterfall.  She said it was under the waterfall.  She was struck by the orange-green tree in bloom in the back yard.  We do have a Tulip Poplar that has orange and green blossoms early in the summer.  There were barely any leaves on the tree yet.  Where she was looking when she said that was not where that tree is located.

She decided that the eyelets on my hiking boots (which I wear every day now that I am retired) were jingle bells.  She tried to make them jingle but they would not work.  She told me in that matter of fact voice that her oldest Brother’s widow had changed her last name, having married someone whose name was new to me.  I am confirming that such a thing has not happened.

We talked for a while about the fact that I knew the things she had said not to be true outside of her thinking and dreaming.  She said there was no reason that I would lie to her about it, espeicially about our Daughter.  She said she just felt that people were keeping things from her.  I explained that all the folks I read about online shared that their spouses suffering from the disease that she had talked the same way about things.

I recognize that telling her it is the disease is not going to convince her that the dreams/hallucinations/delusions are not real.  I just want to be consistently telling her the truth as I understand it since sometimes she is lucid and seems to understand that they are not real.

She was not up for long this morning before wanting to lie down.  She slept for over five hours.  I knew that I should insist on her getting up periodically to go to the bathroom, but she seemed unable, certainly unwilling to get up at the two hour intervals at which I gave her a pill.  There was bedding to be washed and pj bottoms to be washed.

She finally got up to eat a late lunch around 4pm.  We were invited to head to Neighbors Carol and Eddie’s house for ice cream and goodies.  I thought we could try.  Mary Ann wanted to do it.  She was having trouble with hallucinations as well as trouble sitting up without fainting.  I asked her again, and she insisted that she was all right. I called to say we would be coming over in about an hour.

Immediately after doing so, she moved to her spot in front of the television and her head went down on the little table with the pillow.  After a bit the deadly combination of fainting and intestinal activity began.  I was able to get to the phone to cancel just before it began in earnest.  Gratefully, it did not last as long as it had that last and most difficult Saturday evening.  As always, it was very demanding physically.  It has to be hard on her, but she remembers very little of it.

She is in bed, but seems to be in the sort of mode that is likely to result in lots of night time activity.  That remains to be seen.

I spent the time she was napping in deck therapy and more sunflower seedling removal.  I reread the article from Weavings that I read yesterday.  I also got the latest newsletter from a nearby Spiritual Formation retreat center called Shantivanam.  The newsletter has a short series of segments for meditation.  The birds were fairly active again.  By the way, the crazy Robin returned this morning to challenge his reflection in the lower window on the deck.  They had quite a battle.  I am not sure who won, but he finally left after a half hour or so.

A few minutes ago, Mary Ann needed a commode trip and asked if the people were settled down and in bed.  I just couldn’t bring myself to follow the general wisdom and just say yes.  I told her that while I could go along with the hallucinations, I wanted her to know that I would always tell her the truth whether she wanted to hear it or not.  I told her that there are no other people here.  It is just the two of us, and we are in this together.  Whether it is the best way to respond or not, it is the one I have chosen.

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.

 

April 12, 2010

What Does She Remember?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , |
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“Do you remember anything about last night’s bathroom ordeal?”  She answered, “I remember you saying there’s poop everywhere.”  I asked the question because Mary Ann so often has little or no memory of times that have included lots of fainting.  In fact, Mary Ann seems to remember very little of the difficult times.  What a blessing! I, however, do remember.

The night did not go well for the first few hours after the bathroom debacle.  Mary Ann was up every few minutes, sitting on the side of the bed, not sure why.  As a result, both of us were exhausted this morning.  Mary Ann was especially confused about most everything.  The fainting continued.  When she ended up in bed after breakfast, I decided to lie down also.

Both before and after our naps, the fainting was constant.  Every time she stood up, she fainted.  That meant that I needed to be within a few feet of her all the time.  It is interesting that even though she fainted every time she popped up, what would seem like a natural deterrent did not work.  Since she has no awareness of the fainting, it does not work its way into her consciousness when she feels the need to stand up.  Most of the times she stood up and started to try to get around the front of the chair, seemingly headed somewhere, she could not tell me why she stood up and where she was going.

As the day wore on, the fainting began to subside.  I suggested that we attend the Evening Service at church tonight.  While, as usual, there was no verbal response, a little while after I asked about church, she stood up.  When I asked where she was headed, she answered that she was going to get her shoes.  That was her way of answering my question about church.  It is hard to explain just how frustrating it is to have no verbal clues to help discover her thoughts or intentions.  I have to wait for some physical movement to determine what she has decided.  What is more frustrating is to ask, get one answer, and then seconds later discover by her movements that she is actually doing the opposite of what she said.  She said, “no,” she is not interested in doing whatever.  Then she immediately gets up to do what she just said “no” to.  It is just the nature of the misfiring that goes on due to the Parkinson’s Disease Dementia, but it is nonetheless frustrating.

We did go to church.  She did very well.  It was sort of odd to realize that those who saw us, had no idea what we had just gone through with the fainting and bathroom nightmare.  It would have served no purpose to do anything other than just say, we are doing okay.  One commented on this blog.  She may have been aware of what we had gone through last night.  It does help to know that there are some who track how we are doing.  Caring enough to read about our days is a precious gift to 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.

 

April 10, 2010

Bucket List?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , |
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This morning she said, “Let’s go some place and have some fun.”  Further interaction confirmed that she meant some sort of major trip this summer.  As we talked, she said, probably nowhere high [in elevation].  We had begun arranging through friends the use of a condo in the mountains of Colorado a couple of years ago.  After consulting with the Cardiologist, it seemed unwise to tackle a high elevation, putting stress on Mary Ann’s heart.

In the movies, a bucket list makes all the sense in the world.  Who could argue with doing anything and everything you have wanted to do before dying when death seems to be coming in the near term?  In the movies, whatever stands in the way can just be written out of the story line.

The dilemma in deciding what to do in response to the request for a major trip for fun, is that there are conflicting realities.  Each has validity.  One reality is Mary Ann’s view that is no longer reasoned through the executive function of her brain.  To her, the fainting, bathroom issues, problems with eating, falling, sleep problems, access to appropriate medical care, all are of little or no consequence.  She lives in a world in which she is constantly protected by those of us around her, taking care of whatever problems arise.  In that reality, there are no barriers to traveling wherever and whenever, just having fun doing all sorts of things.

There is validity in that view.  The various assessments of her physical/mental situation suggest that there may not be many years left to do all sorts of entertaining and enjoyable items on our wish list.  Assuming that is so, we need to get out and do anything and everything we can, as soon as possible.

The other reality is that we are on a roller coaster in which there is no telling if Mary Ann will be alert or completely out of it, whether she will be able to stay awake or will crash suddenly, whether she will be able to stand and transfer to the toilet stool or will crumple in a dead faint.  We don’t know if she will be able to eat or sleep or discern reality from hallucination/delusion/dream.  In the other reality, I am the one who has to figure out how to deal with whatever comes when it comes.  Not having the resources that are easily accessible here at home when problems come is a real issue.  This is not a movie.

The question is, how do we balance what is actually so in our little world with what we would like to be so.  My problem is determining how many of the barriers that I see are more my own concerns over what might happen rather than real barriers.  Now that we have made decisions associated with the transition to Hospice Care, the fear of not making it to a hospital in time may be unsettling, but it is no longer the primary issue.  We have already faced that demon and stolen its power.

I don’t want to stand in the way of Mary Ann having as good a quality of days as possible in these next months or years.  I also am not infinitely good and capable and strong and filled with limitless endurance for whatever may come.

In a recent thread of posts by members of the online group of Caregiving Spouses of those with forms of Lewy Body Dementia, there were some who talked about the struggle to do enough to provide adequate stimulation in their Loved Ones’ lives.  Some in that group have seen how others can draw the best out of their Loved Ones as they respond at a level referred to as “showtime.”  We have just come off three weeks of visits by friends and family.  Mary Ann has been at her best much of that time.  She has been engaged in conversation, she has laughed, she has connected and initiated interactions.  As Caregivers we want to provide that sort of quality all the time.

We can’t do it.  We can’t provide enough to compensate for their limitations.  Last night Mary Ann did not sleep well.  Today she made it through lunch, then crashed, fainting so much that she just had to lie down.  That was at about 12:30pm.  I tried to get her up two or three times, but it was 5:30pm or later before she got up.  We got some Dairy Queen, she came home and crashed again.  No matter how romantic it sounds to check off items on a bucket list, there are some parts of our reality that we can’t change.

For now, my intention is to think as creatively as possible about options for places that might be fun for Mary Ann.  I am willing to stretch beyond my comfort zone what we try to do.  She has mentioned the Quilt Museum in Paducah, Kentucky as a possible destination in the past.

…I have just been “scared straight!”  My comments above about two realities have just ceased to be a balanced weighing of conflicting views.  I have spent the last hour (not sure, lost track of time) in an intense battle with active intestines, in a fainting, jerking stiff body, fighting against every move to try to keep what was coming out off clothes and into its designated receptacle.

Mary Ann is only 113.5 at last weigh-in, but it took every ounce of strength I have to try to manipulate her into position, hold her up while trying to clean her up, while she would stiffen in a sort of mild seizure, or go completely limp becoming dead weight, all happening while trying to take clothes off or put them on or wipe off her body where it had spread or the toilet seat so that it didn’t spread again when she fell back down on it in a faint.

This was about as tough a time as we have had with that activity.  I describe out loud the difficulty I am having and my frustration with it as it is happening.  That is part of my getting out what would be tougher to handle if I tried to keep it in.  A couple of times when she happened to be conscious she told me to calm down. My most frustrating moments are the times her body is fighting against what I am trying to do to get her seated so it will go where it should go.  Once, she even said I should put her some place, to which I immediately responded, “I am not putting you anywhere!”

I have now rinsed the matter off Mary Ann’s pajama tops and bottoms in fresh toilet water, put them in and started the washer.  I have washed my hands fifteen times.  Cleaned the stuff from under her fingernails, gotten her in clean clothes and into bed.  There was one aftershock that included the fainting and all the rest except (gratefully) for the “stuff.”  She is again in bed.  I have taken a couple of Ibuprofen to take the edge off the back and muscle pain from the physical exertion.

You have just had a peak into something that is routine in the lives of many Caregivers.  Others in the online group have to do what I just did but with someone who outweighs them by a hundred pounds.  I have no idea how they do it.

Mary Ann will be fine; I will be fine.  It is just another day on our roller coaster ride.  This encounter with one of our realities has certainly suggested that traveling a long way may not be a very good idea.  It is hard to imagine doing what I just did, but in a motel bathroom.  At the moment, our bucket has no room for a list, it is full of poop.  Tomorrow is another 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.

 

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