The oxygen is now running.  It took the oxygen and only one very small dose of Morphine to relieve the heart pain this morning.  Since then Mary Ann has been in bed 100% of th time.  She did not want to sit up any of the times we asked her today. She seldom moves at all, but just lies still, with her eyes open most of the time.

Daughter Lisa and I changed her while she remained lying in bed.  At this point it is not so much how difficult it is to help her in the bathroom but how hard it is on her for us to drag her around that has led us to that approach.  Each thing in its time.  We now have briefs that tape on the sides.

Mary Ann did take some sips of water at various times.  Earlier today, she ate a single serving container of tapioca.  That has been the sum and substance of her nourishment today.

Words are few and far between and barely audible when they come.  We have given up trying to give her any medicine.  She just can’t/won’t take it.

Daughter Lisa was due to leave tomorrow.  She has decided to stay longer.  Our Son-in-Law Denis will be arriving tomorrow evening.  He will stay a day and then take the girls with him back to Louisville, KY.  Gratefully, he has a huge, very close family there, with lots of Sisters and Nieces waiting in line to help with the girls while he is at work.

Needless to say, I am relieved that she will be here at least for a while as this new reality sets in.  Lisa has been a Certified Nurses’ Assistant [CNA] and later an Administrator of a large multi-level Senior Care complex.  She is checking carefully for any red spots that could develop into pressure sores, making sure her Mom is shifted regularly.

Son Micah opted to come for the day today. He dropped out of a BBQ contest in which he was enrolled to spend the day here.  This is hard on both of the kids.  We are all helpless to do anything about this, so we just hang out together, staying close to Mary Ann.  This could go on for some weeks.  The kids will have the challenge of determining when to be here and when to be taking care of their primary responsibility to their respective families (who are wonderful and understanding).

I was planning on attending a wedding this evening and offering the mealtime prayer at the reception.  In fact, that was one of the reasons Daughter Lisa had planned on returning home on Sunday rather than Saturday, so that she could stay with her Mom, allowing me to be away from the house for the wedding.  When all those plans were made, none of us had a clue about what would be happening.

We  have seen a Guiding Hand in the way things have been playing out.  Mary Ann’s decline came on suddenly only days before Lisa’s scheduled visit.  The girls were scheduled for a sleepover with friends, so they were not here last night to be disturbed by the Hospice Nurse and the oxygen delivery.  When there are huge things that are out of control, it is not unusual to notice little gifts that come along the way.  They are signs that we are not alone in this journey.

Tonight’s wedding was the wedding of Christine and James.  Chrissy will soon be an ordained Pastor.  I have enjoyed watching her grow in her commitment to that service.  On occasion when she was in town, as she began and continued her training, we would talk over coffee.  Those conversations always stretched me intellectually and Spiritually.  She has been in Africa a couple of times trying to make a difference for good.  She has a view of humanity that is not limited by national boundaries or ethnicity.

I didn’t like missing the wedding, but, just as I mentioned in an earlier post when I had to miss Katie and Jacob’s wedding, while they spoke their vows I was doing what they were promising.

Time for some rest.

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We may or may not use them since the pain has now subsided.  Mary Ann had some heart pain tonight.  At first, one nitro pill seemed to take care of it.  Daughter Lisa was with her while I had a couple of hour break at a church event.  When I returned, Mary Ann said her chest still hurt.  We used two consecutive nitro pills about ten minutes apart.  She still said she had the pain.

At that point, I phoned the Hospice Nurse.  She suggested trying a third nitro pill.  She also said she would call the Medical Director.  She thought he would probably suggest the oxygen and Morphine.  The third nitro pill seemed to work, but the wheels are now in motion for us to receive the oxygen and Morphine tonight.  It is about 11:30pm as I am writing this.

Today had some tough times and some good times with Mary Ann.  The first activity this morning was at least a half hour of intense physical exertion in the bathroom.  It exceeded the terrible Saturday morning bout a couple of weeks ago.  There was a lot of production this morning when on the toilet stool (a good thing), but the fainting and form of seizure that results in her stretching out and stiffening all combined to make it harder than ever to handle.  I was dripping in sweat by the time it was over.  I did not call Daughter Lisa for help since I wanted to determine whether I would be able to do it by myself — probably not much longer.  I will need to figure out a way to take care of those tasks while she is still in bed.

The good times included a thorough cleaning by the Hospice Aide.  It was a bed bath with the addition of hair washed with shampoo and water in an inflatable basin for that purpose that I bought at the Munn’s Medical yesterday.  Sonya got her dressed and brought her out in the transfer chair.  She had the best hour or so we have had in many days.  She greeted Lisa and Granddaughters Abigail and Ashlyn.  She drank Cranberry juice, she ate tapioca and yogurt, drank water.  Then we rolled her outside to join Lisa in watching the girls use the little slippery-slide Lisa got at Target yesterday.

Neighbor Carol came by and spent time with Mary Ann, as well as Lisa and the girls.  After a while, Mary Ann needed to lie down again.  Friend Jeanne came by for a few minutes to see Mary Ann, as well as Lisa and the girls.  Mary Ann stayed in bed either resting with her eyes sometimes open, sometimes closed for the rest of the day.

At one point in the afternoon, she seemed to want to sit up, so Lisa helped her get up on the side of the bed.  Shortly, she fainted and shifted into the stiff as a board mode.  We got her back lying down.  Later, just before I left for the Youth Fundraiser, Lisa and I took her to the bathroom.  It went reasonably well, but ended with the stiff as a board mode.

…It is now about 12:30am.  The oxygen is here.  Hospice Nurse Lisa brought the Morphine and explained how and when to use it.  Her vitals are so good (other than the blood pressure) including the oxygen saturation percentage, that it seems unnecessary to use the oxygen right now.  If the chest pain returns, I will start it.  That is in accord with Nurse Lisa’s counsel.  The same is so with the Morphine.  I will give the lowest dose if she gets agitated, has trouble breathing, or the chest pain returns.

It was quite a flurry of activity, maybe not actually necessary at this moment since the pain subsided.  It is comforting to have helpful options available for the time that those options are needed.  Things seem to be moving both up and down pretty quickly.  Knowing Mary Ann, I will make no predictions on how things will proceed from here.  I am just along for the ride.

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It was a very good day today, given recent challenges. The summary is: She went to her Tuesday morning group; the Hospice Nurse visited her; Mary brought Baskin & Robbins (yeah!); and the Hospice Social Worker came and spent some time with us.

Mary Ann decided that she should get to her Bible Study Group this morning, even though it appeared that she was too tired and would not be able to get up in time.  As I fed her breakfast she said something very revealing about her perception of Hospice.  I was not sure how much of what we talked about through the family meeting and meeting with Hospice folks.  She asked what she would be doing the rest of the day after her group study and if she would be spending the night here at the house or not.  It dawned on me that she had somehow gotten in her mind that enrolling in Hospice meant she would spend her time at a Hospice place.  We do have a Hospice House here.  Our Parkinson’s Support Group meets at a local Hospice office.

I reminded her that one of the main benefits of Hospice was that we could stay home to the very end.  I told her that the Hospice folks would come to us here at home.  It was an interesting conversation.  She seemed to understand.  It did reveal just how significant the decision about Hospice was for her.  When she said yes to Hospice, she must have been saying yes to going someplace other than home from now on.  That is a thought I still could not tolerate.  As strong-willed as she has always been, it has surprised me how readily she has generally accepted what the Kids and I have thought best for her.  We always made clear that we would honor whatever her wishes were to the extent possible.

At Bible Study, apparently she participated appropriately at the beginning, then soon put her head down for the rest of the time other than pill time.  It is such a wonderful thing that the group is so accommodating to Mary Ann even when she cannot fully participate.

She wanted to eat at the New City Cafe, but thought better of it when we got to the parking lot.  She was still struggling in the car just to keep her head up.  I went in and got her favorite meal there, the Seafood Tortellini Salad to take with us.  When we got home she ate lots of it, along some bread they sent with it and her usual Pepsi.

Early in the afternoon, Hospice Nurse Emily came by.  She is young and enthusiastic.  She did a great job with Mary Ann, who was in bed napping by that time.  She took her vitals and checked her out.  Again, her blood pressure was pretty high. The equipment company had delivered the wrong style shower chair.  When Nurse Emily got back to the office, she followed up with the supplier and, hopefully, a more appropriate chair will be delivered tomorrow.  Bath Aide Zandra’s Supervisor called and said that tomorrow’s usual shower and hair washing would be a bed bath instead.  I am hoping the shower chair will allow showers to resume.

Another reason that I am hoping the showers can resume is that Mary Ann seems to be regaining the ability to help in transfers from bed to transfer chair to shower chair to the chair at the dining room table.  The curled hands seem to be loosening some.  It may still be wishful thinking, but it seems that her hands are also less swollen.  The medication, Amantadine, that was stopped certainly has a powerful impact.

The Hospice Nurse will come twice a week, Tuesdays and Fridays.  We can cut that back to once a week if that often does not seem necessary.  Soon after Nurse Emily left, Mary came by for a visit, bringing the Baskin & Robbins ice cream treats.  Mary schedules the Volunteers who visit Mary Ann.  As I have mentioned on occasion, we use the free website to schedule times and days of visits.  It is a wonderful tool.

Just as Mary was leaving, Hospice Social Worker Kristin came by.  She spent quite a while since it was the first visit.  I was pleased at how responsive Mary Ann was with her even when the questions were not easy one word answer questions.  Mary Ann answered many questions about how she feels in different areas.  There were questions about how anxious she was, or scared or depressed or hopeful.  Mary Ann seemed to answer as I expected, with a lower level of concern than most would have in Mary Ann’s situation.  I understood one of her responses well enough to bring up the dreams about our divorcing and the kids divorcing (all not true, of course).  She admitted that those dreams were upsetting to her.

Social Worker Kristin also asked how I was doing in all the same areas.  As I responded, it seemed to me that while I am experiencing fully all the dynamics of our situation, it is happening in a fairly healthy way.  When she asked if I was grieving, I answered by saying I am using the pay-as-you-go plan.  I am trying to surface the feelings and face them as they come, rather than hiding them from myself and others.  She asked about guilt feelings.  I told her that I choose to admit pretty boldly the mistakes of which I am aware.  It was an opportunity to reveal a bit of my understanding of the unconditional love of God.

After that conversation, I felt as if both Mary Ann and I are as okay as we can be given our circumstances.  If we were more okay with them I would really worry about our mental health.  If we didn’t get down and a little depressed once in a while, we would have to be crazy!

I am certainly pleased with the care Hospice is providing.  I am also pleased with so many good people’s willingness to show their concern and do whatever they can to help.  It is as if there are two worlds out there, the one reported on in magazines and newspapers, on the radio and on television and computer screens — and the world made up of the flesh and blood folks with whom we live in community.

Mary Ann did get to sleep last night and slept well.  Me, too.  She ate well at all three meals (I fed her) and she is now in bed.  As always, I will not presume to predict how the night will go.

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“I am cherishing every moment we have together.”  That is what I said in last night’s post after the challenge of feeding Mary Ann.  I lied!  As terrible as it sounds, I don’t cherish every moment.  At 4:15am after having been aroused for one thing or another multiple times an hour (the last one only five minutes before) Mary Ann insisted on getting up.  I did not cherish that moment with her.  I got her up and out in front of the television in the living room and went back to bed for an hour.  Then she was ready to lie down, at least for a while.

I guess I am a terrible Husband and Caregiver to admit to not cherishing at all times my sick wife on the last leg of her journey from here.  Yes, I do feel guilty about it.  I sound so sweet and loyal and loving when I say I cherish every moment with her.  I am not all those things!  I am just an ordinary selfish somebody trying to live out my life and my relationship with Mary Ann with a degree of honor, expressing my love for her.  I do cherish most of the time with her, extending even into waste management.  I just get grumpy when I don’t get my beauty sleep.  (Who is going to be the first smart-aleck to suggest just how clear it is that I am seriously sleep-deprived?)

Is it the Amantidine that we resumed that is making the hallucinations and restlessness so intense, or, since she had slept four days, were we just due for the usual return of that behavior?  God only knows, and He ain’t telliin’.  How about the idea of somehow trying to get God a wireless router so that he could just email responses to prayers and cries for help??  How getting on that, Steve, Bill?

When Daughter, Lisa was here last week, her Mom slept all but about four hours of Lisa’s visit.  “Lisa, I would gladly have traded last night for one of the sleep days or nights you had when I was gone.”  Yes I am grateful that Mary Ann is napping now.  I gave her the morning dose of Amantidine, still hoping that she will regain the use of her hands and the ability to assist with her leg muscles when being transferred from her chair to the bed or toilet stool or dining room chair or car, should we be able to get her out again.  This almost 67 year old body is beginning to show its age (the mind is still 25 years old, except for the memory which is pushing 90).

At one point last night Mary Ann was convinced that she was not in her bed, but another bed like hers.  She was convinced this morning that the dining room table was not our our dining room table.  In fact when I first tried to transfer her to the dining room chair for breakfast, she refused since she didn’t want to sit next to the bride.  At least when I checked with her, the bride wasn’t Lulu (the woman I married after divorcing her in one of her dream/hallucinations).  She didn’t know who the bride was.  When I asked if she wanted me to turn on the television she said it was “his” television, not ours.

She has been napping for about three hours now.  Yes, I am grateful for the break.  I just don’t want her to sleep too long.  She had a good breakfast, but she has not yet had lunch.  It is after 2pm.  Our Daughter-in-Law Becky relayed an email from a close friend who works for a Hospice.  In that email, she said that people come to need less nourishment at this time in life, suggesting that I can relax if a meal is missed.  Mary Ann always “ate like a bird” — one reason she has never gotten overweight (very annoying) in all our years together.  Other than ice cream, she usually eats what would be the equivalent of a child’s portion (a pre-teen child).

This morning Bath Aide Zandra brought a helper with her since Mary Ann had fainted so many times the last time she did her shower.  Zandra was concerned that Mary Ann had hit her head because she couldn’t get into the right position soon enough to stop her from falling off the shower chair.  She asked about the possibility of getting a secure three sided shower chair so that Zandra could stand in front and be sure she wouldn’t fall to the side.  We had a tubular metal rolling shower chair that we obtained a few years ago.  It turned out to be unsafe because of the reinforcing bar across the front, making safe entry and exit from the chair virtually impossible.

Zandra was a bit distressed to see how much Mary Ann had declined since her visit last Wednesday.  Today Mary Ann could not assist at all in getting from the transfer chair to the shower chair and back.  Mary Ann’s hands were fine last Wednesday but swollen and clubbed (nor sure that is the right word for describing the claw-like form) today.

I just called our Hospice Nurse, Emily, who listened carefully to what we needed for the shower.  She said she would try to find it for us.  In fact, she said that if we didn’t hear from her, one would be delivered tomorrow afternoon.  Holy Mackerel!! That is an unbelievably fast response.  I have seen PVC pipe chairs that looked sturdier, but the last time I searched a couple of years ago, I didn’t see one without a bar in front.  I hope the supplier Hospice uses has something workable.

Mary Ann had an appointment with the Dental hygienist for her much needed quarterly cleaning scheduled this afternoon.  I did try to get her up in time to go, but she declined.  That was at about 1pm.  It is now 2:45pm and she is still sleeping.  Again, she didn’t want to go to bed until after 11pm last night and spent much of the night, especially from 2am or 3am on, up and down.

She slept until some time after 5pm. She ate a good supper, sat in front of the televsion for a while, then headed back to bed about 7:30pm.  At about 8pm she was hungry and wanted a bowl of ice cream again.  After taking some Ibuporfen for back pain and then later taking her night time meds, she is now lying down.  I am not expecting her to settle in without lots of restlessness tonight.  We will see.

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We met with two folks from a local Hospice program for about an hour and a half this afternoon.  The construction has begun on the sunroom.  Lisa has arrived.  Three of the anticipated events have been (are being) realized. 

Lisa came in late in the evening.  Mary Ann was in bed but awake enough to get to see her and talk for a moment.  It will be interesting to see which Mary Ann will be present with Lisa during these three days, sleeping Mary Ann, hallucinating Mary Ann or lucid Mary Ann.  It could be all three who appear.  This form of dementia is so odd and unpredictable in how it presents itself. 

The folks from Hospice were, of course, very pleasant and engaging.  The one who took the lead was Nurse Lisa (same first name as our Daughter – lest you be confused).  She had managed to get information from the doctors, at least the Cardiologist.   She had read it over carefully and was fully aware of Mary Ann’s situation, at least to the extent of what was covered by the information she had received. 

They asked lots of questions, and listened carefully to the account of Mary Ann’s current situation and recent history.  There is a doctor in Kansas City who is charged with determining if Mary Ann’s problems rise to the level required for enrollment in Hospice.  The three general problems that will be evaluated are her heart issues, her late stage Parkinson’s and her dementia.  It is one of those three that must be at a certain level.   

One understandable but mildly disappointing observation made by Nurse Lisa was that Mary Ann’s dementia was certainly not bad enough to qualify her.  Understand, I would be happy to hear that she isn’t yet far enough along to require Hospice care.  Nurse Lisa made that comment after Mary Ann got up from a nap and I brought her to the table with us.  Mary Ann was alert enough to present herself well. 

Parkinson’s Disease Dementia [PDD]  is a Dementia with Lewy Bodies [LBD].  It is different from Senile Dementia or Alzheimer’s Dementia.   PDD/LBD does not move in a steady decline but erratically jumps between severe dementia, especially hallucinations, to lucidity, or sleep.  All of the LBD Spouses in the online group I am in know about “showtime.”  People with this disease can present themselves in a way that looks and sounds as if they are functioning very well.  Later this evening Mary Ann was hallucinating almost constantly, just as she had early in the day.

One of the challenges with this disease is finding people who understand it, or educating them so that they do.  We will find out by Friday what the doctor says about the assessment of her problems and their implications for enrolling in Hospice.  Since I will be out of town on retreat, they will call our Daughter Lisa.  By the way, our Daughter Lisa worked in a Hospice program in South Carolina for a few years.  She said that there and in the Hospice programs she has checked on the Internet, a problem called “Failure to Thrive” has often been used.  That is used when there are multiple problems, including weight loss.  Mary Ann’s height/weight ratio fits well within the range of those who qualify for other hospice programs. 

Nurse Lisa and the other Hospice rep named Chris mentioned that 20% of those who enroll in Hospice, eventually graduate.  That means they get better and no longer fit the criteria for enrollment.   If Mary Ann is enrolled, we will set graduation as a goal.  While the resources and support provided by Hospice appear to be wonderful, we have a pretty effective system already and would like to extend our quality time together.  Bythe way, a recent study is suggesting that those enrolled in Hospice generally live longer than those who are not enrolled in hospice.  The LBD Caregiving Spouses online group posted that information this morning, well before this afternoon’s meeting with Hospice. 

This morning we experienced the classic frustration of conflicting medical problems and treatments.  When Bath Aide Zandra was doing the morning shower, hair washing, dressing routine, Mary Ann fainted two or three times — once she bumped her head since Zandra had her hands full with soap and hand held shower sprayer and could not catch her in time.   I suggested to Zandra that maybe I could give her the Midodrine that helps raise her blood pressure before Zandra comes to see if it will help.  Then when Parish Nurse Margaret was here later in the morning to spend a couple of hours with Mary Ann so that I could have a break, her blood pressure measured 204/100.   There seems to be no way to keep her from experiencing a low blood pressure syncope (fainting) without raising her blood pressure dangerously high.  Imagine how high it would have been if I had given her a Midodrine this morning before Zandra came.

The jury is still out on whether eliminating the Amantidine is more good than bad (see last night’s post). 

After the meeting with Hospice, we managed to get to a Lenten Worship Service at church and the meal following.  At the meal, she was willing to let me feed her.  She ate a good quantity of food.  She usually resists letting me feed her in public.  It may be that there are so many church folks there who have been very accepting and very helpful to us, that Mary Ann simply feels secure enough not to be so concerned about what they think of her as she is being fed. 

The very noisy construction crew have been doing demolition and then preparation for putting in the subfloor of the new sun room.  It will be hard to put that project out of my mind so that I can relax for the three days I will be on retreat.    The time is set for John to come to the center and spend time talking tomorrow evening (see last night’s post)

It seems like such an important transitional time for us.  It will not be clear how important it is or is not until weeks or months later as this journey unfolds.  The Spiritual Formation Group’s conversation this morning centered on the matter of  looking for past times that ended up serving as teaching moments for God to shape who we are becoming. 

I guess it is still energizing and exciting to realize that even as Geezers we are growing and  becoming more than we have been and less than we will be.  It is sort of like Adolescence without the pimples!  (Constipation instead.)

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I think spending the day last Saturday while Mary Ann was sleeping, moving into and through the feelings about where we seem to be headed allowed me to listen better and and come to terms with where Mary Ann is now in the disease process.

In the phone call about the fax I sent last week, Dr. Pahwa’s assistant relayed the option that Mary Ann see a Psychiatrist to look over the medicine regimen to see if there are some better options for her.

When we talked with Dr. Pahwa today, it was apparent that the Psychiatrist option made sense if I was still uncomfortable with the Seroquel.  We would need to use a local Psychiatrist where we live (an hour from KU Med) since one of the main alternative meds demands monthly blood tests to monitor it.  I have read enough to know, and Dr. Pahwa confirmed, for the sort of dementia Mary Ann has, Seroquel is by far the better choice.  The alternative also is likely to make the fainting worse.

Here is the heart of the matter.  There is no one around this area who knows the unique characteristics of Parkinson’s as well as Dr. Pahwa.  I suppose it sounds arrogant to say so, but I would have to explain the uniqueness of Mary Ann’s complex version of Parkinson’s and the character of this dementia to someone who is a generalist and does not focus all their attention on Parkinson’s.

I know of nowhere to get better information on what to do and when in dealing with the complexities of Mary Ann’s expression of Parkinson’s.  Every time in the last 23 years we have gone to anyone other than the Dr. Pahwa and Dr. Koller before him, Mary Ann has done poorly.  She has been where she is now in some ways at least twice before, once 14 years ago and once about 8 years ago.  The first time it was Dr. Koller and the second time it was Dr. Pahwa who brought her back to a high level of functionality each time within weeks of seeing them.

While he was sensitive in how he approached it, and actually simply responded with a look that said more than enough when I said it, Mary Ann is doing as well as we can hope given how long she has been battling the Parkinson’s.  Changing meds in some elusive search for the perfect combination restoring her magically to a former place in the journey would be a very risky exercise in futility.  What might be gained is not worth the risk of what could be lost.  Those are my words, but he agreed immediately.

If we lower the Seroquel, we opt for less sleep time and more hallucinations.  Selfishly, I don’t think I could handle that result.  The two days and nights she sleeps, allows me to sleep.  The times there are streaming hallucinations already push me right to the outer edge of my capacity to cope.

It is time to accept that we are where we need to be.  This is our new normal.

We talked some more about enrolling in Hospice.  We will have a family talk this Saturday when the kids and I are together.  If Mary Ann is awake and alert, we will certainly include her in that conversation.  If she is not, I will talk frankly with her about it.  I have already begun doing so.  I talked openly with Dr. Pahwa, as we were together with Mary Ann in the Examination Room.  I talked about the DNR (Do Not Resuscitate) order that would be expected for the full Hospice program.

I will try to get someone from Hospice to come over to the house before I leave Thursday morning for three days of solitude at the Spiritual Renewal Center in Oklahoma.  I will also try to get any input the Cardiologist might be willing to give that could help inform the decision.

I mentioned in last night’s post that Mary Ann was beginning to hallucinate.  She also fainted two or three times during that first commode trip of the night.  She did not sleep soundly through the night.  There were a number of trips to the commode.  As happens when we transition from sleep days to hallucination days, she was up more than once an hour in the last half of the night.  I finally fed her a single serving container of applesauce and took her out in front of the television with the promise that she would not get up.  Then I got a few minutes more sleep, until the alarm went off, got showered and dressed.  By that time, she had, of course, gotten up and was on the floor outside the bedroom door.  She did get a scrape on her leg, from what I am not sure — there was nothing obvious that she might have hit.

She took her pills and ate breakfast in time for Bath Aide Zandra to get her showered, hair washed and dressed in time to leave for the Neurologist appointment in Kansas City.

She had pretty much shut down and moved into her head on her lap mode as we moved from the bedroom to the door to the garage.  I have never had a more difficult time physically, getting her out of the chair, to the steps, down the steps, to the car, and into the passenger seat.  I almost had to carry her.

We made it into the car.  She had her head down the entire trip to KC.  Getting her out of the car and transferred directly to her wheelchair went much better there — probably because there was no walking, nor were there any steps.  In the past, steps have been her best thing.  That is one of the  unusual characteristics of Parkinson’s.  The line of the step make it easier to get her feet to move than on a flat plane.

In the doctor’s office, she was in leaning forward mode, although not all the way to head in lap position.  She was minimally responsive during most of the time with the doctor.

We agreed to fill out an assessment that will be used in a study on the impact of non-motor symptoms of Parkinson’s — all the problems other than the ability to move arms and legs, and keep balance.  The survey took a very long time.  Mary Ann was really struggling to respond.  I am not sure how helpful we were to the study.  One interesting quirk was that while she managed to say the months of the year backwards, December, November, etc., she could not track with another request.  She was asked to count backwards from 100 by sevens.  I was glad I wasn’t asked to do that.  Kelly, who was administering that part of the survey, explained it and repeated the instructions a number of times.  Mary Ann’s first response was to just count backwards from ten to one.  Kelly repeated that it was counting from one hundred, subtracting seven each time.  She then said what is seven subtracted from one hundred.  Mary Ann answered, three.  She never connected that Kelly said 100, no matter how many times she explained it. Mary Ann always responded with ten.

Admittedly, it was hard to watch as she was asked to write a sentence of any sort, and she made some tiny scribbles and was not able, of course, to read it or say what she wrote.  She was to draw a simple shape matching one on the paper in front of her.  She made a couple of attempts, but to no avail.  Mary Ann was always very good at drawing.  She illustrated a children’s book she wrote many years ago.  She never tried to get it published, but it is very cute.

I know she hates how much she has lost over the years.  It has become just a fact of life now.  It is part of our current normal.

When we got home Mary Ann ate some thick and hearty steak soup with my help, finally falling asleep in her lemon meringue pie. She was refusing to let me help her at that point.  She napped in bed for a couple of hours, got up, ate the pie (this time letting me help), and soon headed back to bed.  Of course, I cannot be sure how tonight will go, but we are on the increasing hallucination time if her current cycle of symptom changes continues.

Today was a day in which the facts of our situation seemed quite clear. Having worked through the strong feelings about the matter last Saturday, and a Sunday morning a month ago, seemed to make it easier to be rational about the information available to us today about where Mary Ann is in this journey with Parkinson’s tagging along.  Dr. Pahwa reminded us how long our battle with Parkinson’s has been going on — twenty-three years now

It is time to accept where we are in the journey.  We don’t have to like it.

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.

She is sleeping; I am thinking about Hospice.

She has been sleeping for 24hours other than about an hour doing food and pills this morning (about 11:30am) and one trip to the bathroom this afternoon.  I wake her enough to give her the 1/2 Sinamet every two hours.  That pill is for keeping mobility.  While she hardly needs mobility when sleeping, without the Sinamet, she stiffens up and becomes very uncomfortable.

I have now found something that I can cook for Mary Ann that she seems to like very much.  I do a very skillful job, and the result, I must admit is very tasty.  I get a slice of bread out of the package, toast it to perfection, butter the toast from corner to corner, slather on some super-chunk chunky peanut butter and top it with some of Maureen’s homemade preserves.  I cut it into quarters and hope I don’t get my fingers bitten as I help her eat it.

She had juice, a container of yogurt, the PBJ on toast, and that is all in the last 24 hours.   So far I have not been able to get her to get up even for a commode trip, let alone some supper.  It may happen yet.  It is 8pm at the moment.

It just popped into my mind that this is sort of like riding some sort of tilt-a-whirl.  I almost go crazy with the hallucinations, praying that she will take a nap, and my heart sinks when she sleeps so long, fearing that she is not going to get up.  We have been on this ride long enough, that I don’t lose my bearings as we swing one way and then the other, but I have to tell you it sure isn’t as much fun as riding the tilt-a-whirl (not that I can remember riding one — I probably would have thrown up — I was mostly a roller coaster guy in my younger years).

While she has been sleeping, I have been thinking, or maybe it would be more accurate to say, feeling.  So many times in my ministry I have tried to help people deal with hearing the word “Cancer” in a diagnosis.  Minds immediately fly to the worst case scenerio for how things will go.  While that may be the way things go, the word “Cancer” spoken as a diagnosis does not determine an outcome.  It has implications for outcomes, but ask any Cancer survivor about some of those possible outcomes.

Well, the word “Hospice” carries with it for me the weght of many visits to people in our local Hospice House, whose stay most often varies from hours to days, and then they are gone.  I have ministered to people for forty years with most of those entering a hospice program reaching the end of their lives not long thereafter.  While I realize intellectually that there are folks who have been enrolled in hospice programs for years, my gut has no clue about that.

In addition to the gut reaction, there is the harsh reality that Mary Ann has been declining at what seems like breakneck speed.  She has bounced back from so many medical problems that would have taken someone with less strength of will, part of me is just waiting for her to rally, as usual.

This time she seems to be moving past the point of being able to return to the level of functionality we enjoyed just a few months ago.  I will happily eat those words if a week from now she is her old feisty self.

Today, as I had time to immerse myself in the implications of “Hospice,” I did what I usually do, what I think should be done, I felt the feelings that come with the potential loss.  I grieved.  I have been down this road before, more than once.  The memory that surfaced today was the memory of sitting in an empty emergency room about four years ago at a hospital in Tucson, Arizona, while Mary Ann was somewhere else in the hospital receiving a test of some sort.

We had flown to Tucson to attend a gathering of Lutheran Seniors at a large retreat center there.  On the plane trip down, Mary Ann began having some congestion, I am convinced due to the poor air quality in the airplane.  As the days went by, it got worse until we decided to call an ambulance.  I remember looking back from the passenger seat of the ambulance to see the one EMT in the back trying to deal with Mary Ann’s arms and legs flying this way and that, because of the dyskinetic movements produced by the Parkinson’s meds.

As I sat in that empty emergency room, a thousand miles away from anyone I knew, any family, the doctor and nurse had just left.  The doctor told me that the X-ray had shown her lungs to be completely white.  She would most likely be on a ventilator by morning.  I asked if it was time to phone the kids to get them to come, implying, of course that otherwise they would not see her before she died.  The answer was, of course, yes.  I called them.  They each got on a plane and came, Lisa bringing a little one with her.

I had what seems like an eternity in that room, sitting by myself.  The feelings were powerful, the moment surreal.  Today, I remembered what it felt like to think about losing Mary Ann.  I have written at least one post almost a year ago that included a desrciption of some time thinking about her eventual departure.  While a few hours from now Mary Ann may be irritating the Hell out of me getting up and down and up and down (which at this point I think I would celebrate), it seems very possible that we are approaching the beginning of the end.

I need to tell you that my heart is aching as I am writing those words.  I don’t mean to sound dramatic.  I will be fine.  I am just describing feelings as I am experiencing them.  This is what it means to be alive!  Mary Ann is still alive and may be for a long time.  If she is not, if I am not, it is still all right.  We are secure beyond our time here.

She just got up to use the bathroom and get a drink of water.  She was not hungry and is in bed again.  It is about 9pm.  She was lucid and did not seem to be hallucinating.

After a while, I put on the CD by Lisa Kelly, one of the Celtic Woman group.  As I listened to it again, most of what is on it is relevant for someone thinking about a life’s partner, as well as the need to let go and the challenges associated with doing so.  In the song “May It Be” there is a refrain, “a promise lives within you now.”  As I listened to music that resonated with my feelings, I thought about how trite and shallow and sentimental music can be when it seeks to manipulate the feelings of listeners.  I realized that what makes such music meaningful is only real life, lived with all the struggles and mundane tasks adding depth to what could be shallow and meaningless.

Let me say it this way.  With all my self-doubt and lack of confidence, painful flaws and weaknesses, guilt feelings about all that I have not done that I should, especially in showing Mary Ann and my Children how much I love them — with all of that said, I am keeping my promise to Mary Ann.  That promise lives within me now and it is not just a feeling. It is being lived hour by hour and day by day.  I hope at some level Mary Ann feels secure in that promise.

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.

The fax is working!  It seems to be a great way to maximize the quality of the communication with the doctor.  Even though Mary Ann’s appt. is not until Monday, the Neurologist, Dr. Pahwa, has read the fax.  Through his Assistant, Stepanie, he contacted us by phone with a couple of things to think about before Monday. 

The first is that we think about whether or not we will want a referral to a Psychiatrist to deal with the decisions about what meds will serve best in dealing with the hallucinations.  I will, of course, ask for a referral to someone who knows Parkinson’s Disease Dementia and Lewy Body Dementia and what differentiates it from Alzheimer’s Dementia.  It needs to be someone with a large enough patient base of those with Parkinson’s Disease Dementia to be able to speak from experience as well as from book learn’n.

The second suggestion was to think about a referral to a Hospice program.   Medicare and many other insurer’s require a prognosis of six months or less.  I have not yet phoned a Hospice program to be sure what their requirements are, but the marketing materials often talk about a Palliative program that is a longer term intervention that provides a transition to the full Hospice care.  

Having been a Pastor for forty years, I have interacted with Hospice and many who have used it.  The reactions have been almost unanimously positive.  Many in the online Caregiver Spouses group have used Hospice.  Most in that group have had positive experiences. 

Whatever insurance and Medicare do or do not require, there is an expectation that the person being enrolled will not be resuscitated if they experience a cardiac arrest.  There is the rub.  I am not sure that Mary Ann and I are ready for that.  Four months ago, I doubt I would have seriously considered it.  Now, as much as she has declined in the past few months, I am willing at least to consider it.  I am not sure Mary Ann would be willing to accept a DNR order.   Actually, not long ago, our Daughter-in-Law had relayed a suggestion to us from a friend who had read this blog.  That suggestion was to check into hospice.  At that time I started thinking again about the DNR issue.  Mary Ann has declined considerably since that suggestion and its consideration. 

This Wednesday evening, our Daughter, Lisa, will arrive from Louisville, KY, to stay with her Mom for three days, while I have three days of respite at a Center for Spiritual Renewal in a beautiful rural location in north-central Oklahoma. 

In talking with Lisa this evening about the Hospice suggestion, she admitted that it was something she was intending to bring up during her visit.  She has been an Administrator at a very large CCRC, mult-layered complex for older adults.  She supervised the construction and staffing of a dementia building there.  She has also served on the Staff of a Hospice program in South Carolina, working with Volunteers. 

My hope is that our Son, Micah can come from Kansas City so that we can all talk about the matter of Hospice and the DNR that will be required if we choose to enroll MaryAnn.   Our Daughter, Lisa, and our Son, Micah have been a tremendous support.  I respect their ability to process the options with wisdom and rational thought laced with love and concern for both Mary Ann and me.  

Last night was another difficult one.  She was up for a number of times, not as many as some nights, but at least six or eight times.  There were dreams to be dealt with.  She needed to get up very early again, but this time a little single serving applesauce won us another hour or so of sleep. 

One of the times, around 6am, I heard her and awoke to see her standing by the bed.  I rushed over to see what she needed.  I asked if she needed to use the commode.  She seemed to say no, but then talked very fast with slurred words that were unintelligible to me.  She did that a second time.  I tried to manipulate her to sitting back down on the bed. 

It was not until the moment I reached around and got her moving into the sitting position that I realized that she had pulled down the pj’s and disposable and there was soft stool to be dealt with (sorry!).  There followed moving her quickly to the commode, changing clothes and rinsing out bedding so that it could be washed. 

At that moment I started thinking about how to title this post in a way that would change yesterday’s title “Difficult Day” to whatever comes after that that would indicate the next level of difficulty. 

Gratefully, the day improved some.  Actually, Mary Ann had a pretty good day.  I was glad for that since friend Jeanne had visited last week and Mary Ann slept almost entirely through the time she was here with Mary Ann.  Jeanne had a good part of the day able to interact with Mary Ann today. 

One odd moment came when I returned from some errands to find Jeanne very excited about the fact that our Daughter, Lisa was, according to Mary Ann, pregnant.  Mary Ann was convinced that I had told her Lisa was pregnant.  She, of course is not pregnant.  The fact that there simply are no boundaries between dreams and reality for Mary Ann creates some very interesting and sometimes bizarre results. 

Mary Ann is still in hallucination mode, but it has been a little more manageable today.  She did nap for a time this afternoon.  She ate very little supper and was not interested in my help.  She did not even eat the ice cream treat from Baskin & Robbins.  That actually is distressing since I have counted on at least being able to get some calories in by giving her ice cream.   Mary Ann’s recent weight loss seemed to Lisa  be especially relevant to the discussion Hospice Discussion.

Mary Ann is in bed now, and has not so far needed my intervention.  That has no bearing on how the rest of the night will go, but it is allowing me to write this post with fewer interruptions.   Here is hoping for a few hours of uninterrupted 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.