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March 11, 2010

Cardiologist Agrees!

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , |
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Even though at the family meeting we all heard Mary Ann say yes, she would like to have the Do Not Resuscitate order in place, it is not easy to formalize that decision.  There is a paper to be signed and witnessed by someone outside of the family to make it valid.  It can, of course, be rescinded at any time. 

It was a help to have a long conversation with our Cardiologist who knows Mary Ann’s situation intimately.  It was almost seven years ago that she went into the hospital through Emergency with Congestive Heart Failure.  That was his first exposure to the complexities of Mary Ann’s unique situation.  He is the one who said she was within a hair’s breadth of going on a ventilator at that time. 

It was then that the silent heart attacks were discovered.  We apparently assumed it was just bad reflux from taking all the medications every day for the Parkinson’s.  The Cardiologist confirmed just how unlikely it would have been then to imagine that almost seven years later, she would still be here and we would be having today’s conversation.  In fact, he admitted that while none of us can predict such things, even with all her heart problems, he does not expect that to be what finally ends the journey for her. 

Mary Ann is one tough Cookie!  I respect his assessment of the her situation.  In fact it encourages me that while Hospice works with a six month trajectory, Mary Ann may have a different idea.  As difficult as this is sometimes, I would rather continue for a long time than lose her. 

In fairness to Mary Ann, we need not to do things that could prolong her days past her ability to have some quality of life.  Yes, we seem to have moved into the last leg of the trip.  We need to be realistic and put in place plans that fit those circumstances.  We do not, however, have to assume any specific time frame.  We can’t know that.  While we are here together, we are here together.  It is not that somehow there is less of Mary Ann because she has a cluster of health problems that seem to be moving into the end stage. 

Earlier today I read a post in the online Lewy Body Dementia Spouses group that was a lengthy article that was published in England containing a detailed description of LBD and stories of folks who have had it.  It was interesting to see in such specific terms so many of the problems Mary Ann has, especially the hallucinations and delusions.  Mary Ann’s is a textbook case.  The article pointed out that the whole person is still present in someone with LBD pretty much to the end.  That whole person comes in flashes or for longer periods of time, without warning when that whole, lucid person is about to return or about to leave again.  It is confusing but at the same time comforting to know she is likely to still be with us some of the time to the very end. 

One thing about which the Cardiologist was adamant was to let go of the heroic measures and do exactly what the Hospice folks asked us to do.  Call Hospice, don’t call 911, don’t go to the Emergency Room, don’t use the paddles, don’t do CPR, don’t go to the hospital, don’t insert a feeding tube or other mechanisms for prolonging days that are coming to an end naturally as her body winds down.  Yes, use every medication available to treat immediate symptoms.  If there is an infection, use antibiotics.  Control pain to the degree possible.  Gratefully, most of the things above are already in the pretty standard Living Will Mary Ann and I had done by a local Attorney credentialed in Elder Law. 

It was very helpful to have confirmation by the Cardiologist that we have made the right decisions along the way.  In Mary Ann’s case the combination of End Stage Parkinson’s, Parkinson’s Disease Dementia that is progressing rapidly, and a Cardio-Vascular System that is well past repair, made the decision process less challenging than others might have. 

With all that said, this is Mary Ann we are talking about.  Seven years from now the Cardiologist and I may be having another conversation about Mary Ann much like today’s –” Who could have guessed seven years ago….??”

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.

 

March 9, 2010

Cherish?? Maybe not Every Moment

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , |
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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.

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.

 

March 8, 2010

Mary Ann is Now in Hospice Care

Posted by PeterT under Daily Challenges, Family, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , |
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What that means is that we have someone to call whatever comes up.  A Hospice Nurse will stop by a couple of times a week.  We have added one day a week of having an Aide to help with shower and hair.  Mary Ann loves current Bath Aide Zandra, so we will continue to use that paid service.  All the Hospice costs are covered by Medicare.

The Hospice Nurse who enrolled Mary Ann today was already helpful.  Mary Ann declined so much in the last few days since we took her off one med (Amantadine), that I thought we should start it again.  Because these are powerful meds, I didn’t want to do it without professional advice.  This is Sunday.  Nurse Jennifer contacted the Hospice Pharmacist and confirmed that it was all right to restart the med.  The most obvious change was the clubbing of Mary Ann’s hands, rendering them useless — in four days.  We are all hoping that her hands will return to functionality when the med reaches the therapeutic level in her bloodstream.  There are no guarantees that she will regain what she lost.

Mary Ann was a little more responsive this afternoon.  She was up while the Hospice Nurse was here, and she responded appropriately a few times.  She has been sleeping much of the day, but up for breakfast and to get dressed, as well as an hour or two after the Hospice Nurse left.  She was actually lying with her head down and her eyes closed, but at least she was out of the bedroom.  She ate lunch, the usual half sandwich, chips and a Pepsi, followed by a good-sized bowl of Buttered Pecan ice cream.  As hard as it is to hold her head up and feed her at the same time, I am cherishing every moment we have together.

She has not yet eaten supper.  I have been going in to talk with her every half hour or so to see if she is hungry or wants to use the bathroom.  She finally got up to eat at about 8pm.  She ate a substantial supper capped off with a small Boost and ice cream shake.  The Boost should help assure adequate nouishment.

As the evening has worn on, it is beginning to appear that the Amantidine is a very problematic medication.  She is now very alert, unable to sleep, doing some hallucinating, and when she was in bed complaining that she couldn’t move.  She is up and in the living room watching television, sitting up and it is 11:15pm.  There is no sign she is slowing down — I take that back.  She just decided to lie down in bed.  I don’t know how long that will last, but she has been sleeping most of the time for almost five days, so I guess it would be no surprise if she is up many times tonight.

It is tiring be be jerked around so much of the time by medications that wreak havoc with her functionality.  Sometimes they work, sometimes they don’t.  Sometimes they do exactly the opposite of what they are supposed to do.  Then in an hour or a day or a week, they start doing what they are supposed to do — or not.  I will wait to see if her hands open and resume usefulness.  If they don’t, I will talk with the doctor again about the possibility of removing it.  When looking at side effects, Amantidine’s list contains very many of Mary Ann’s problems.  Stopping it seemed to result in the clawed hands and weakness that does not allow her even to assist in a transfer, let alone walk, even with assistance.  Today after restarting the Amantadine this afternoon, it has seemed to produce more strength and alertness, sort of bringing her back to life.  Of course I can’t be sure the medicine is causing all the changes.  It is just that the changes seem to associate directly with the times we stopped and then started again the Amantadine.

Even the professionals, Doctors and Pharmacists can’t help very much since people don’t always react in the same way to the same medication.

On the positive side of taking the Amantadine, if it helps with her alertness and ability to communicate, that will be a very good thing in the next few weeks.  Some of Mary Ann’s friends and family intend to come and visit.  They would appreciate being able to interact meaningfully with her.

Some readers have asked about the time at the Retreat Center — how it went.  I have already written about the two evenings.  The day Friday was wonderful.  It was 70 degrees and full sun all day long.  Thursday night, when heading out to watch the sun set, I was spotted by a deer, who headed over to be with ten more deer.  I watched them for a long time.

During the day on Friday, I walked at a leisurely pace along the path that wanders back and forth through a large wooded area.  The moss on the path was in its new spring shade of green.  The trees were budded out ready to burst open with flowers for leaves.  There were birds to be enjoyed. There were some I couldn’t identify (not unusual).  Even though they are common, the Red-Bellied Woodpecker that doesn’t have a red belly, and the Yellow-Rumped Warbler, that does have a yellow rump are just fun to call by name.

I did see something out of the ordinary.  It is what one of the staff there has dubbed the Mutant Armadillo.  It is certainly an Armadillo, but the largest one I have ever seen, dead or alive.  I suspect it would take five or more of the ones that are routinely spotted on the side of the road with their feet in the ari to match the weight and size of the monster I saw.

I sat for a long time on the three legged stool in the fartthest corner of the property I could reach.  I read Psalm 104, a great description of the creation and all that’s in it.  Then I read the a few chapters in the book probing the implications of physics in regard to the presence of God.  It was a good grounding for me as we ride the roller coaster we are on here at home. I did take a moment to phone home from that place.  I have done that on the last few retreats.  It helps me keep the world of prayer and meditation connected to the day to day reality.

I continue to be overwhelmed by the words of support through the electronic media.  There is no chance to feel isolated and alone when so many are thinking of us and praying for us.  Thank you all for that.

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.

 

March 4, 2010

Hospice Report — Lisa’s Here — Construction Begins

Posted by PeterT under Daily Challenges, Family, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , |
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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.)

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.

 

March 2, 2010

Time to Accept a New Normal

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , |
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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.

 

February 27, 2010

Neurologist’s Office Called

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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.

 

February 24, 2010

Only One Good Day!

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And that day was yesterday.  This morning she awakened up early and had the sort of borderline lucid but intense demeanor that usual signals the return of difficult times.  Her blood pressure was up again (200/110), moving us back to no Midodrine.

She did all right getting ready and eating breakfast (of course with me feeding her), and seemed to be doing reasonably well when I took her to her Tuesday Morning group. She apparently did very well in her group, tracking and responding (softly) appropriately a couple of times.  By the time I came to pick her up, she had started leaning to the side  Her eyes were closed and she was not responsive.

In the car I suggested some options for picking up food or eating out.  I was very apprehensive about the trying to eat out, but at this point I will do anything to get her to eat.  She liked the idea of eating at BoBo’s (the local diner that made the Food Network’s series on Diners, Drive-ins and Dives).  I thought about getting take-out, but fries and burger would be cold by the time we got to the house.  Mary Ann wanted to go in.

I knew it would be a challenge since her eyes were still closed and she was moving with great difficulty and struggling with communicating. I am now physically exhausted from getting her in and out of BoBo’s and feeding her.  Maybe I am also emotionally exhausted.

I got her into the booth, but she was leaning and having trouble sitting up.  I had talked with her enough in the car before arriving to be able to order right away, a cheeseburger, fries and a chocolate shake for her.  I ordered my usual fish sandwich.

As soon as the food arrived, it was obvious that Mary Ann would not be able to eat it by herself.  I moved her over and sat beside her in the booth (BoBo’s is very tiny with people on top of one another).  We were there shortly after 11am, so I hoped we would be in and out before the crowd — flawed thinking.

On the positive side, she ate most of the hamburger and shake.  However, feeding her was terribly difficult in that setting.  Since she could not sit up or hold her head up, I had to hold her up with one arm, using the hand on that arm to hold her head up, while using the other hand to feed her.  They had cut the burger into quarters at my request.  I am surprised at how physically challenging it was to hold her up that way while feeding her.

The shake was a special challenge.  At first, I used a spoon.  It is hard to communicate how difficult it is to get something soft and melting into a mouth that is hanging down over the table.  Her neck muscles are very strong and stiff, so pulling her head back to keep her mouth accessible takes all the strength I can muster.  She does not seem to balk at my pulling her up that way, so I don’t think it hurts her in any way.

After trying to use the spoon on the shake, I decided to wait and let it melt so that she could use the straw.  It was too thick for her to pull it through at first.  Later, after it melted, she was able to pull it up through the straw.  To make that work, I had to hold her head up with one hand (the one on the arm wrapped around her body) and hold the shake in her lap so that the she could get her mouth on the straw.  Again, the good news is that she drank most of the shake eventually. I felt pretty wimpy to be exhausted and sore from feeding Mary Ann lunch, but I guess I will have to accept that I am not as young as i used to be.

When we got to the house after BoBo’s, she was beginning to hallucinate a little (seeing a tube of something on the floor, there was nothing there).  After a trip to the bathroom, she went right to bed (about 12:45pm).

I am disappointed that it is appearing that this time we are getting only a little more than one good day after the last round of a couple of days of hallucinations and a couple of days of sleeping.  The last time we got almost three good days before the the troublesome ones returned.  Maybe she will be fine after a nap.  I guess it is apparent that I am not very hopeful about that.

The problem eating at BoBo’s today has the potential of having some lasting fallout.  There is now vividly ingrained in my psyche a disincentive to going out to eat.  I will need to be confident that she will not have such a difficult time and need so much help before risking eating in a restaurant.  I realize that this experience needs not to steal from us the freedom to go out.  Those feelings will, however, play into every decsion about whether or not to go out from now on.

She slept with only a commode break or two until 6pm when I got her some supper.  She allowed me to feed her, so she got a reasonable amount of food.  The hallucinations were not terribly strong during that time.  She sat in her chair for a few minutes after supper, and then headed in to lie down again.

She has the television on and has been restless for the last three hours.  I am at a loss to predict how things will go tonight and tomorrow.  Patterns just don’t ever stick with this disease.

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.

 

February 22, 2010

Snowed in and Asleep

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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I am beginning this post shortly after 2pm today.  Mary Ann settled into full sleep last night some time between 12am and 1am.  Other than two trips to the commode, she has been sleeping ever since. 

Just a few minutes ago she called my name, I went in and got her on the commode.  I told her about all the snow, she responded appropriately and clearly.  In moments, she was back to being unable to respond.  All she could do was make a grunt.  I tried to talk her into getting dressed.  She was just too non-responsive to manage that. 

I managed to get the Exelon patch changed, but she was not interested in taking her meds.  I don’t think she could have awakened enough to get the meds swallowed.  I reluctantly put her pj pants back on and let her lie back down.  She was having trouble continuing to sit erect on the side of the bed.

As always, I am grateful to have gotten a full night’s sleep.  While I don’t like losing her presence when she is in the daytime sleeping mode, sometimes she is fairly lucid for a while after she has slept off the last bout with streaming hallucinations.

Sooo close!!  Almost made it!  At about 2:30pm I decided to get something to eat.  After I got something heated and started eating I heard her.  By then it was 2:45pm.  I asked if she was ready to get up.  She said she was.  I suggested getting dressed before pills and food but thought better of it when she couldn’t seem to geet her eyes open. 

She drank some apple juice (with Miralax) and took her pills — I put them in her mouth and put the straw to her mouth to take with with the juice as is now the norm.  I fed her a container of yogurt.  Then I started suggesting cereal options or whatever might interest her to eat.  I remembered Mary’s jello (green jello, pineapple, cottage cheese and Cool Whip).   She wanted that and ate a good-sized serving.  It should be helpful since there is protein, calcium, fruit and carbs in it. 

Then I joined her at the table and finished my bowl of beef and noodles.  She asked where “Dad” was.  I think that would be me.  When I asked who she was thought I was and she answered “Mom.”  At that point, I suspect she had connected better and was just being silly — not sure about that. 

Anyway, as soon as we got back to the bedroom to get her dressed — you guessed it.  She needed to lie down again for some more napping.   That happened a little after 3pm.

Mary Ann got up again at about 6:45pm.  There was an odd irrational hope that the fainting issue had just sort of left her.  At the same time, I knew it would return eventually.  Earlier today I worked on re-writing the fax to the Neurologist and had mention dropping the Midodrine until the fainting returns.  I knew it was wishful thinking to expect the fainting to stay away.

Well, it has returned.  She fainted twice while in the bathroom, once on the stool and once when I returned her to the transfer chair.  She fainted again when she decided to stand up while sitting in front of the television.   What an insidious disease this is.  Not every person who is diagnosed with Parkinson’s will have to deal with quite this many symptoms in such severity.  It is the major heart problem combined with this form of dementia that has produced so many debilitating symptoms. 

It was not long before she decided she wanted to go back to bed.  She had said she did not want to eat when she got up this time.  I asked her again, listing lots of things as we were ready for her to get back into bed.  She agreed to go out to the table.  Again, she chose Mary’s jello.  I fed her a large dish of it. 

She is now back in bed.  It is 7:15pm, which means she was only up a half hour.  I am readying myself mentally for a difficult night.  She has slept through days and nights before, but it seems unlikely to me that she will manage to sleep through tonight also.   The most I can do to prepare is to get to bed early enough to increase the odds of getting some sleep even if it is a bad night.  I got a good night’s sleep last night.  That will help.

My day was spent mostly reading posts of those in the online Caregiver Spouses group and the Kansas Birders.  I managed to rewrite the fax to the Neurologist and update it.  I did get outside to shovel off the deck and a path to the birdfeeders.  It was good to get a little exercise and get the birds some food that is accessible in six or so inches of heavy snow.  I am often annoyed on days like this that I still manage to procrastinate on many of the tasks on my list of things needing to be done.  There is in the back of my mind the likelihood that as soon as I get the preparations made for doing whatever it is, Mary Ann will be up and in need.  It is as good a reason as any to put off until tomorrow what could be done today.   (Isn’t that how that saying goes?)

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

 

February 17, 2010

A Sleep Day

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , |
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She went to bed at about 9:15pm last night.  She didn’t stir until about 8am, not even a commode trip.  I had gone to bed early and got a good night’s sleep also.  I got her up then to use the commode, talked about going to her Tuesday morning group while she sat on the side of the bed, still half asleep.  As I suspected, she needed to lie back down.  It is almost 12:30pm, and she is still sleeping.  A few minutes ago, I asked if she was ready to get up.  She did not respond.  I will check regularly now, so that she can get food, meds and a trip to the bathroom as soon as possible.

One of the folks in the online Lewy Body Caregiver Spouses group has made a movie and entered it in the the 2010 Neuro Film Festival on YouTube.  That video can be found by going to youtube.com and entering in the search box 2010 Neuro Film Festival.  Her video is on the second page, titled, Life with Lewy 2010.  There is another video on that page that is painfully funny to those who have been impacted by Parkinson’s. That title is, Parkinson’s Gets a Bad Rap.  I happened upon another video on YouTube titled Parkinson’s Disease — That’s a Laugh.  Check them out.

Mary Ann got up around 1:00pm, got dressed, took pills and with help ate her usual breakfast.  She moved into sitting with head in lap mode after eatng.  She was able to communicate a bit.  There was no evidence of her having hallucinations.

Since she was not done eating until mid-afternoon, it was not long to supper.  I had gotten out some beef fillets from the package we had gotten from Omaha steaks a while back.  Along with broccoli and a baked potato, she ate well at supper.  She even had what was left from last night’s B&R trip for dessert.

Volunteer Barb came to visit for the evening while I had a break.  As far as I know, the hallucinations stayed away during that time.  Mary Ann is in bed now.  How the night will go remains to be seen.

I headed over to Barnes and Noble to find a book that I could sit and read for a while, enjoying a hot chocolate in the Starbuck’s there.  After drinking PT’s coffee, purchased directly from the growers, roasted to perfection here in small batches, Starbuck’s coffee just doesn’t measure up.

I had no intention of buying a book, but I found one that I could not resist.  It is called The Mind of God: The Scientific Basis for a Rational World, by Paul Davies. I thoroughly enjoy reading books that probe the wonders of the laws of physics written by folks intelligent, intuitive and honest enough in looking at the best that science has to offer that they can see the “something more.”  This writer does not conclude the existence of God, but allows that what is implied by the universe and our place in it is something that some might call God.

Since I happen to be a person of faith, I don’t look to this or any other contemporary work to define my view of reality.  I suspect that if/when I finish the book there will be nothing with which I need to disagree to sustain my faith.  In fact, my usual experience in reading such books has been to simply see expanded the wonder and appreciation at what the best of scientific inquiry can bring to my faith.  For me such reading is devotional at least as much as it is intellectual.

I am glad that I got plenty of sleep last night.  Otherwise, I would not have been able to track with the author as I read the first chapter this evening.  It is encouraging evidence that my brain may not yet have atrophied completely!

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.

 

February 13, 2010

Hopelessly Confused — Me, Not Her

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , |
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I need to find some synonym for “confused.”  I wonder how many of the posts I have written over this almost year now of writing that have the phrase “hopelessly confused” in them.  Again today I am hopelessly confused.

Mary Ann settled last night after a few signs of restlessness. Oddly, in one of those restless moments, I came in because she had been moving around in bed, seeming to be ready to hop up (as seen on the monitor while I was at the computer).  She asked me something about where I was going to go.  I don’t remember the exact words.  I told her I wasn’t going anywhere and asked what brought her to ask that question.  She said that she had been thinking (or dreaming) that I was going to divorce her.

I told her that she was not getting rid of me that easily, and that it was not even a remote option.  I wondered from where the thought had come.  Even in my most frustrating moments, when my words were far from sweet, that was never a word used or even implied.  As different as we are in some ways and as many times as we were not pleased with one another in our 44 years of marriage, that was never a realistic option.  I make no judgments on those whose circumstances became so difficult that divorce was the best option in a bad situation.  Our conflicts and frustrations never reached the level of raising that as an option.

What causes me to be hopelessly confused at the moment is that, after working on the sheet to fax to the Neurologist about changing meds to control the bouts of hyperactivity and streaming hallucinations, Mary Ann has been subdued and sleeping a lot.

After our conversation eliminating divorce as an option, she settled in for the night, and the morning and into the afternoon!  She has gotten up seldom to use the commode.  She slept until almost 10am (okay with me!).  I helped her to the commode and got her dressed.  As soon as she was dressed (while we were finishing) she started trying to lie down again.  I took her blood pressure (210/120), and then she just lay back down in the bed.

At about 1:15pm, she was moving a bit, so I asked if she wanted to sit up.  She half-heartedly agreed that she did.  I got her to the bathroom and out to the dining room for pills and yogurt.  As soon as she was done with the yogurt, I asked if she wanted cereal or lunch food next.  Then I asked if she was still hungry at all.  She said that she was tired.  She wanted to lie down in bed again.

It is now 2pm and she is resting peacefully.

It is now 3:30pm.  I sat her up to take her mid-morning (I know!) pills, take her to the bathroom, change her pad (disposable underwear), and get her jeans on again.  I asked if she was hungry.  She said no.  I asked if she would like to come out into the living room and watch some television.  She said she wanted to go back to bed.  That is where she is.

It is now 8:30pm.  I got Mary Ann up (she was reluctant) at about 5:30pm.  She was not hungry, but after sitting up for a while, she agreed to eat some supper.  I cooked and sliced up a bratwurst for her.  She likes them and they are easy to eat in that form.  She managed to spear them with the fork and get them to her mouth on her own.  She had a chip or two and some Pepsi.  Then she ate a dish of ice cream from the freezer with very minimal help from me.  She had some fairly normal intestinal activity.  She then sat in the chair in front of the television, but after a short time of sitting up, began leaning forward on her lap again.  At about 8pm she decided it was time to go to bed.  I cannot imagine that she will sleep the night after sleeping most of two full days and nights.

I now have no idea what I would write on the sheet to fax to the Neurologist.  What I wrote Wednesday does not reflect what is going on now.  If meds are changed to calm her down, she hardly needs that.  If meds are changed to perk her up, the wild hallucinations and hyperactivity might return with a vengeance.

By the way, I expect the hallucinations and hyperactivity to cycle back in at some point. I dread that time.

She hasn’t been fainting but seems likely to do so again judging from the past.

Everything she is experiencing, including the vacillations from one extreme to the other are talked about frequently by those in the online group of Lewy Body Disease Spouses.  That does not prove that Mary Ann’s current vacillations don’t have to do with medications, but it does suggest that all this is just part of the deal. It also helps take the pressure off, suggesting that what I do or do not do as problems arise probably does not have all that much power to change things either for the better or for the worse.  This is outside my power to fix.

For someone who has been a planner who struggles with changing quickly from workable patterns, this is madness on steroids!  At the moment, as long as I accept that things may change in a heartbeat, Mary Ann sleeping a lot and remaining fairly subdued when awake makes caregiving doable.  I lament the loss of having more time that she is alert and communicative, but I am grateful for being able to continue to care for her here without going crazy.  If/when the hyperactivity and streaming hallucinations return, it will take about fifteen minutes for me to conclude again that I am in over my head.  What a ride!

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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