August 26, 2009

Sleepless Nights Increase Hallucinations

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
[3] Comments 

It was 4am before Mary Ann finally went to sleep last night.  The hallucinations were vivid and constant.  The family of people and the raccoons were present much of the time, one or the other.  On two occasions I asked her whom she was talking to.  Once her answer was the raccoon; the other time it was the little girl (blue-eyed).  Today in what sounded like a lucid moment, she asked me if I was ever going to tell her about that family.  Needless to say, all I could do was respond that she would have to tell me about them, since she was the only one who could see them.

I have been going to bed early (for me) the last three nights in hopes that my presence in the bedroom might reassure her and allow her to settle.  She was restless all three nights for much of the night.  Last night it was constant until that 4am time.  She was up and moving and talking and shuffling around.  At one point, I turned on the bright overhead light with four 60watt bulbs and left it on for an hour or two in hopes that the hallucinations would be diminished by the visibility.  It did not work.  The light just made it harder to sleep.

What is an odd dimension to this time is that at least three people who have spent time with or talked with Mary Ann in the last few days have commented on how lucid and communicative she has been, more so than usual.  It makes no sense!  She is wasted, but more lucid at times.  When we are alone she is often so tired that she can hardly hold her head up, she often struggles to track interactions at all.

What makes this a little easier to deal with is the fact that what we are experiencing is not different from what many in the online spouses of those with Lewy Body Dementia.  Others in that group share often that their Loved Ones see and talk with people who are not there.  The group members refer to the lucidity with others as “showtime.”  Many of those Caregivers have to deal with others only seeing their Loved Ones when they seem very lucid.

One of my Brothers phoned to tell us of a tragic death in the extended family.  Mary Ann took the call.  She was apparently very communicative.  After the call she shared what had happened with the Volunteer.  When I returned home she shared with me what had happened.  I phoned my Brother and discovered that the death was of a different family member.  That sort of misunderstanding can certainly happen.  That kind of confusion in tracking what has been said is not unusual any longer.  When a good friend had told both of us about her daughter being pregnant, Mary Ann was convinced that her young Granddaughter was the one who had become pregnant.

What is, of course, a consequence of the sleeples nights is that not only do Mary Ann’s hallucinations get worse, but my stamina wanes and we shift from creating a good quality of life to survival mode, just getting by.  Today was a busy day, Mary Ann’s morning Bible Study had the first meeting for the fall, we had appointments for haircuts for both of us, we had an appointment at the cemetary, and a Volunteer came for the evening.  She did manage to get a couple of hours of sleep in before supper.  On the monitor, she appears to be restless again.  I am not sure I am up to another sleepless night.

The last couple of evenings Volunteers have been with Mary Ann so that I could head up to the spot with the view.  There were a number of deer to be seen, including a buck with a six or more point rack.  There were lots of bats and a few nighthawks.  I enjoy watching them.  I did a little reading — hard to do when sleep deprived (thank goodness for caffeine), and I listened to some music.

For a week Mary Ann has been taking a slightly larger dose of Seroquel which is supposed to control the hallucinations and help her sleep.  So far, the opposite has been so.  I will give it another few days, and if there is no improvement, I will increase the dosage by another increment suggested as an option by her Neurologist.  If that doesn’t work, I will fax the details of her status to the Neurologist with a request for other options that might have a chance of improving our quality of life.

As I mentioned in an email to my Brother, life is not for sissies!

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.

 

August 19, 2009

Visit to Neurologist Specializing in Parkinson’s

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , , , , , |
[8] Comments 

Today was our semi-annual visit to the Neurologist at the KU Medical Center’s Movement Disorder’s Clinic.  Dr. Pahwa is a national level Neurologist specializing in Parkinson’s Disease.  We have struggled mightily with this disease every time we have not been seeing either Dr. Koller before him or Dr. Pahwa.  Geography and insurance interfered with access to KU Med for a number of years during the twenty-two since Mary Ann’s diagnosis.

We are pretty well convinced that we have the best care available.  That is both good news and bad news.  It is good news since we have access to the latest and most effective treatments.  The bad news is that there is not much else we can do to improve Mary Ann’s ability to function.   This is the best we can expect.

Today, we reviewed the medications.  We reported on the changes that have been made.  At Mary Ann’s request, we reduced the dosage of Sinamet, the primary medication that treats the motor symptoms of Parkinson’s.  It is the same medication that has been used for decades.  With all the promising research projects going on, and the various news stories touting a potential cure, not much has changed since the middle of the last century in treating Parkinson’s.

The benefit of reducing the medication is that it has lots of side effects.  Since reducing the dosage Mary Ann has had fewer and less intense hot flashes that are shorter in duration.  There is a little less of the dyskinetic movements (as seen in Michael J. Fox) during the day.  Dr. Pahwa confirmed that change to be appropriate.  That is a medication that often is left to the patient to determine how much is taken.  Those changes are done within the range acceptable to the Neurologist.

I reported the increase in the Midodrine to keep Mary Ann’s blood pressure high enough to reduce the fainting spells (Orhostatic Hypotension) to a more manageable level of intensity and frequency.  The change in that medication was done in consultation with our Cardiologist, who prescribed the Midodrine.

We talked about the increase in hallucinations and their interference with sleeping.  As expected, he suggested a small increase in a medication called Seroquel.  He reminded us that one problem with increasing the Seroquel is that it can make the blood pressure problem worse.  Again, we are riding on a tiny margin between side effects battling one another.  We are in hopes that the contest will end in a draw.

I made the mistake of mentioning something about the online Lewy Body Dementia spouses’ group and information about the Autonomic Nervous System I researched on the Internet.  I can only guess that he is frustrated with Patients and Caregivers who second-guess his recommendations based on the often bad information.  I just made the observation that in looking up what the Parasympathetic side of the Autonomic Nervous system governs, the list included pretty much every area in which Mary Ann has a problem.  He was not rude, nor did he say anything much in response.  He just moved on to closure of the appointment.

I trust his knowledge and experience.  I just recognize that the more we know about the disease, the better we can do at dealing with multiple doctors and the more likely we are to make good decisions by actually understanding the options and their implications. That knowledge has been especially helpful when Mary Ann has gone to the Emergency Room and/or has been hospitalized.  The medical professionals there deal with such a variety of problems that they can’t possibly keep up on the details of all of the various diseases.

The next appointment is six months from now.  We will see if the increase in Seroquel has a positive effect.  Dr. Pahwa is willing to increase the dosage more if this does not work.  He increased the dosage from 100mg to 125mg.  He suggested that we move to 150mg if the smaller increase doesn’t move the hallucinations back to a level that does not interfere with sleep.  That decision is in our hands.

At the moment, we seem to have the best of what is available to deal with the Parkinson’s and the Dementia.  While we would like to have a better quality of life, our job is to make the best of what we have.

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.

 

August 14, 2009

Meaningful Caregiving Webinar

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , |
Leave a Comment 

It has just turned into an impossibly frustrating night.  Mary Ann is in hallucination mode.  We were on hands and knees with her face within inches of one of the wheels on a leg of the bed, and she said, there it is, the baby raccoon.  Not long before that, she told me a raccoon had “taken a dump” on the sheet at the foot of the bed, and asked me to clean it up.  It took a long time of looking at that sheet for her to accept that the poop was no longer there, although since then she has not allowed me to pull the sheet up over her.  For the last half hour she has been picking up needles with thread in them from the floor.  I turned on the overhead light with four 60watt bulbs burning brightly and put her glasses on her face so that she could see clearly what was and was not there.  She still kept picking up the needles fearful that someone would get them stuck in a foot.  

I am now at the computer looking at her on the video monitor as she is leaning over the side of the bed busily trying to pick up things from the floor.  I am helpless to do anything about it!  I can only hope that at some point she will get tired enough that she will lie down and go to sleep.   She went to bed at about 9:30pm, it is now 11:30pm.  This could go on for hours. 

Tonight there was a Volunteer here with Mary Ann so that I could be at the computer attending an online Webinar provided by the Progressive Supranuclear Palsy (PSP) online support group.  PSP is in a family of diseases that overlaps with Lewy Body Dementia (LBD).   Parkinson’s Disease Dementia (PDD) is a Dementia with Lewy Bodies. 

While the specifics of PSP are somewhat different from PDD, the Caregiving dynamics are pretty much the same.  The primary presenter tonight was Janet Edmunson, whose husband, Charles, was diagnosed with PSP.  After he died, the autopsy revealed that a more accurate diagnosis was Cortical Basal Ganglionic Degeneration (CBGD) which is another in the family. 

One of the characteristics of PSP that she mentioned certainly rang true for Mary Ann (who is now up and at it again in the bedroom).  She called it impulsivity.  That means the person remaining convinced that he/she can still do things he/she is no longer able to do. 

I just made another trip into the bedroom to see if I could do anything to help her settle.  This time as I was trying to get her back into bed, she told me that she was cold and wanted to go home.  When I asked her where she was, she didn’t know, just that she was cold and this wasn’t home.  I asked her to lie down for a while under the covers so that I could finish writing and come to bed.  As she was starting to lie down, Mary Ann commented that the girl was going to fall on her head, but then the girl didn’t.  When I asked who it was, she said, Lisa (our Daughter).  When I asked where Lisa was, she said she was on the wall.  When I asked her if it was the real Lisa or a picture, Mary Ann said something about “the pick of the litter.”  She did recognize when she said that that it made no sense. 

Back to the Webinar.  Janet Edmunson listed some suggestions for Caregivers. 

  • Determine what you are passionate about and find a way to spend at least a little time regularly, keeping it in your life.
  • Explore life’s adventures, store up memories while you and your Loved One are able. 
  • Give yourself credit, affirming just how strong you have been even when pushed to the limits.  She quoted Eleanor Roosevelt’s comparing people to tea — we don’t know how strong we are until we are in hot water.
  • Give yourself grace (forgive yourself) when you blow it.  If you seem to be “blowing it” extremely often, get help. 
  • Accept that some friends will no longer visit, especially when your Loved One can no longer communicate.  It doesn’t mean they no longer care.  Suggest that they come in pairs so that they can talk with each other as your Loved One simply listens. 
  • The personality changes in your Loved One are not your Loved One, but the disease.  One of the consequences of the disease is that the filter, the value system, gets eroded. 
  • Consider using Hospice sooner rather than later.
  • It is normal to grieve even before your Loved One dies.
  • Look for gifts that only this type of tragedy can afford.

She concluded with this wish for Caregivers: May this make you better, not bitter. 

Well, I think I had better get into the bedroom and see if my going to bed helps any.  Her head has stayed still for the last few minutes.  By the way, when she was first getting into bed tonight, for some reason she asked me to take her blood pressure.  It was 110/70.  Can’t ask for better than that.  Her pulse is usually 60 or less, but this time it was 89.  I suspect the excitement of the hallucinations may have increase her heart rate.

It is now 12:30am.  Here is hoping and praying that she can stay settled for the night. 

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

 

August 11, 2009

Problems in Common — It Helps to Know.

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , , |
Leave a Comment 

It was just an off hand complaint when someone in our online group was venting. To paraphrase: She puts the toilet paper anywhere but in the toilet.

I chimed in that during the night, about one in three makes it into the commode.  Then came reply after reply.  I am not sure how many responded when that thread of emails came to an end. It was certainly a surprise to me that so many had exactly the same situation.  Some used grabbers to pick them up and get them in the right place.  Some found them in all sorts of places, often wastebaskets instead of the commode or toilet.

It was sort of comical to hear everyone pop up with their agreement that their Loved One did the same thing.  After a number of replies, one of the group brought some perspective into the stream of comments.  When we look back on this minor annoyance, it will be of little consequence.  Some in the group said they would love to be back at the stage during which their Loved Ones still had the ability to use the TP at all.

I wonder if Occupational Therapists have classes in how to improve the throwing arm of those who struggle with their aim?  I take for granted that one of my jobs is getting what has landed on the floor where it needs to be.  It is not even an issue (or is it tissue — sorry, couldn’t resist) for me.  It was just interesting to me when I noticed my own feelings after seeing all the replies from so many with exactly the same situation.

I felt comforted, sort of normal, on realizing that the Lewy Body Dementia had that same result in so many other households.  It seemed to remove any inclination to be bothered by something so common to others.  It reinforced that that particular habit is one that is a consequence of the Lewy Body Dementia.  Knowing that seems to help reduce the annoyance quotient of that particular behavior.

After last evening’s post, you can imagine how good it was to hear someone else caring for his wife say, “She doesn’t eat what I fix.”  It just makes a diffeence to hear that so many of us have the very same problems as we try to care for our Loved Ones.

None of us wants our Loved One to be debilitated by this disease.  None of us wants to have so many unpleasant tasks added to our daily activities.  As long as this is our life, somehow it helps to know that we are part of something outside of our control, something that is neither our fault nor is it the fault of our Loved Ones.  It is just a n consequence of the disease we are all dealing with.  It is normal – our version of normal, but normal.

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.

 

July 30, 2009

What is it like for Her?

Posted by PeterT under Uncategorized | Tags: , , , , , , , , , , , , , , , |
Leave a Comment 

Below is a link that may need to be cut and pasted into your browser to open.  If you are caring for a Loved One with dementia of any sort, I suspect you will find it both poignant and painful — at least I did.

http://d.yimg.com/kq/groups/7465654/785021372/name/What%20is%20That.wmv

One of those on the Lewy Body Dementia spouse Caregivers’ online group reported that her Loved One asked their adult daughter,  “I don’t know what’s wrong with me or what is going on, will I ever get better?”  She wondered what she could say to him. 

Another of the members of the group who is caring for his wife and has the gifts of perception and writing replied to that post.  I asked his permission to share his words in this post before I included them here.   This was his reply:

“[My wife] asked the same question several years ago, with the same answer and result…
 
…Their entire world around them is shattering, but somehow, they see themselves as a calm center in a whirlwind… that is why it is so hard for them to realize it is them that is having the problem and not the world around them…Think about it, what would be your reaction if things you saw, people told you  were not there…people tell you that you are doing things that you don’t remember…people and places from the past appear again..even though you “know” that they cannot be???, but there they are…you just want to get away from it all…people tell you what to do, when to do it and want you to be the same as before, but you can hardly see why…..Oh, I just feel so bad for our LO’s..and I am gradually learning even after +6 yrs of this that …oh hell, I’m just as lost as ever..maybe just foolin’ myself that I know anything about anything…”
Of all people, this Caregiver Spouse, knows very much about caring lovingly and gently in the face of whatever comes.  All of us in the group have great respect for his wisdom and insight.
One of the members of the group struggles with what the doctor suggests is more about control than it is a symptom of the disease.  Her Loved One shuts his eyes sometimes when being urged to move along and cooperate.   Is that a passive-aggressive way to exercise some control in the situation, or is it just an involuntary act triggered by some misfiring neurons due to the disease?
I cannot even imagine that there is a Caregiver out there who has not wondered if some action or inaction, some slowing down of movement, some lack of verbal response is the result of the disease process or a product of a strong will refusing to cooperate. 
Mary Ann lives in a world in which, for the most part, I have control of what she does and doesn’t do and when she does it.  The style of our relationship has always been and continues to be one in which I work very hard at determining what she wants.  I think it is fair to say that I also try to find some way to fulfill that want if it is physically possible to do so.  Now, lest I sound wonderfully accommodating, I often either use far too many words along with some attitude to tell her why it isn’t possible, or I do it begrudgingly and then grump about it.  So much for sainthood!
When I watched that short video that is referenced at the beginning of this post, when I read the online post quoted above, I was reminded of just how difficult it is to be in Mary Ann’s position or that of any of our Loved Ones who have to depend on a  Caregiver.  Mary Ann is a strong-willed, independent person.  Actually, they can be pretty annoying character traits to a spouse.  Since I have at least as many annoying traits, we have actually done very well together.  She has always had a bit of a chip on her shoulder, not about to be pushed around by anyone.  Now she has to be pushed around in a wheel chair by me.  
What must it be like for her to have someone watching her every minute, jumping up and running to accompany her to wherever it is she is intending to go, suffering the indignity of having someone else clean her bottom?  What is it like to have someone telling her that she cannot use the knives and hot stove, that she cannot go down to the basement to look for something?  I can imagine that she just wants to scream, back off and give me some space.  “I’ll tell you if I think I need you.”
Then there is the frustration of not being able to follow every question asked of her and formulate an answer based on what she wants or needs.  The book “Life in the Balance” by Dr. Thomas Graboys was an eye-opener for me as he wrote how hard for him it was to try to interact verbally.  His Parkinson’s and the Dementia were impacting his ability to process information, form thoughts, put them into words in his mind and then, finally, actually get the words out loudly enough to be heard and understood.  By the time he accomplished all that, the conversations would have moved on to the next subject.
For those of us who are Caregivers, especially full time Caregivers, it is often very difficult to differentiate between willful resistance to our attempts to get cooperation and the progression of the disease process in our Loved One.  Whichever it is, putting their shoes on for a moment can help us gain some perspective and understanding.  Maybe by doing so we can lower our frustration level just a bit  and find some more patience as we say for the twenty-first time, “It’s a sparrow.”
 

July 25, 2009

We Can only Live the Life We Have.

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , |
Leave a Comment 

For those following Mary Ann’s battle with fainting, while I had hope that the higher dose of the medicine that raises her blood pressure to reduce the problem was working, it hasn’t done so well yet.  The fainting continued yesterday.  Today, there was very little fainting.   We will take this a day at a time, and hope that the medicine begins to improve the quality of life.

Speaking of life, there have been a number of interactions on the Lewy Body Dementia spouses online group about quality of life issues.  There are so many brave souls there who have been caring for spouses much more challenging than Mary Ann.

In a post on that group’s site, I mentioned that I had re-framed my life so that I now understand my job to be the care of Mary Ann.  I don’t mean that in a way that makes any less of our being husband and wife.  It is a way for me to think about the tasks I do that gives them meaning and purpose, rather than seeing those tasks as an interference with my life.

There were a number of responses from folks that seemed to struggle with that idea.  They also commit themselves to caring for their Loved One.  Some do better with that care by thinking about the life they hope to lead after their Loved One is gone.  That provides hope that gets them through the tough time.

There were some who observed that whatever our reasons for doing what we are doing in caring for those with a Lewy Body Dementia, we will finally in the end, lose.  This journey will end badly.  In that group we all give one another permission to share our frustrations openly without judgment.  We need a place to do that, especially those who are in the most difficult times in the progression of the disease.

With that said, no matter how devastating and hopeless the situation is, it is, finally, the life we have.  What will or will not be so at some unknown future time, while it can provide some sort of light at the end of the tunnel, is not yet the life we are living.  It may or may not come to be so, but it is not so now.  We are left to try to figure out how to do the best we can with what is so right now.

My intention is to use every resource at our disposal, to fill our lives with meaning and satisfaction.  I am not willing to let meaningful living wait until some future time that may or may not come.

Whether it is a good or bad approach to life, there are lots of things I might have liked to do that I have let go of as options.  They may never be options.  I can feel sad about that, mad about that, fight the unfairness of it all.   In fact I may need to give myself permission to have all those feelings.  Finally, for me, there is neither the time nor the energy to give now to things that may or may not come.  The life we have right now needs our full attention.

Most of the things I am not now doing, singing, traveling, going on spiritual formation retreats, going on bird watching outings, doing part time ministry, volunteering, attending music events, all offer lots of possibilities for entertaining, satisfying experiences.  They are not, however, in and of themselves, the means for bringing fulfillment into my life.  The are the context in which meaning can be found.  Meaning is what we do with the life we have, how we view it, what we take from the context.  Obviously some contexts are harder to live through, than others, some have more pain included, some take more effort to find the meaning, but the life we are living is the one we have.  If there will be meaning and purpose, it needs to be found in that life, not the one we wish we had.

In the sense that it is a certainty that sooner or later death will come, yes, the journey will end badly.  In that same sense, it is true for all of us.  Eventually, we will die, so will those we love.  Today I preached at the funeral of a friend who died at the age of 93, after living a life filled with obstacles to overcome, a life filled with wonderful, poignant, entertaining stories.  Life does end in death.  That is just the way it is.

No matter what our circumstances that end is still awaiting.  Either we accept it and live meaningfully in spite of it, or we allow the fear of death to overwhelm us and steal the joy from the moment we are in.

We happen to have a perspective on life that allows that there is something more than meets the eye.  We understand there to be a Someone with whom we are in relationship, a Someone who provides love and security not bound by finite limis.

With that perspective, we can concentrate on living the life we have as it comes day by day without despair if is doesn’t happen to be the life we would have chosen.

We would not have chosen the life we have, but it is our life.  Each day brings with it challenges, joys, sorrows, relationship struggles and satisfactions, and the opportunity for finding meaning in what we are doing.  Again, it may not be the life we would have chosen, but it is the one we have, the one we will live to the fullest.

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.

 

July 20, 2009

Caregiver and Spouse’s Daughter Responds

Posted by PeterT under Family, Meaningful Caregiving, Sources of Strength | Tags: , , , , , , , , , , , , , , , , , , , , |
Leave a Comment 

I asked our two adult children to respond to some suggested questions to provide their perspective on our situation and to share their feelings about the journey they have been on with us.  Two evenings ago I posted our Son, Micah’s response. 

Tonight’s post includes the response of our daughter, Lisa.  Lisa just turned 40 years old on the Fourth of July.  I remember holding her as the first steps were taken on the moon.  I realized she would never know a time before what seemed to be an event that would change the world for all time.  As it turned out, the change was not so dramatic.  By now I thought there might be regular shuttles to one of the colonies on the moon. 

Lisa is married to Denis (yes, with one “n”).  Their two daughters are Abigail (turning 7 this November) and Ashlyn (turning 5 in August).  About three and a half years ago, Denis suggested to Lisa that they pull up stakes and move from ten hours away to the town in which we live so that they could help us out for the last two years before I could retire.  They did just that.  They have been back in Kentucky for about a year now.  Needless to say, we miss them very much. 

Here is what Lisa wrote:

I had a dream a few nights ago that my Dad was preaching back at our old church in Kansas City. Mom and I were sitting together and some sort of disruption happened outside the sanctuary; I can’t remember exactly what it was. Mom and I rushed to the scene and worked together to solve the crisis. What sticks with me about the dream is that it was Mom before Parkinsons. She and I were together taking care of things, moving quickly, taking charge, making decisions.

It’s been a long time since I have thought about the Mom that could have been. I’ll admit to feeling some envy when my friends talk about their moms who are babysitting grandkids or lunching & shopping together. I do wish we had been able to have those experiences. Even more than that, I wish that my daughters had the opportunity to know the real person inside. Her fun personality and sharp wit are mostly obscured for them, and even for my husband, who has known her 10 years now. That being said, I still have glimpses of her true self from time to time. One visit last fall, Mom & I enjoyed some cinnamon rolls for breakfast. She was pleasant but relatively quiet. After the meal, she needed a bathroom stop. When she reached for the toilet paper, we noticed that I had forgotten to wipe the sticky cinnamon roll from her fingers. We decided it gave a whole new meaning to the phrase “cinnamon buns.” I haven’t laughed that hard in a long time.

 We moved to live near Mom & Dad for 2 years and it was a great experience. It was tiring and sometimes heartbreaking, but also very fulfilling. Being able to help Mom & Dad on a daily basis was invaluable to me because I really felt we were making a significant positive impact in their lives. I liked being available day to day, and in case of emergencies, especially those middle of the night kinds of emergencies. When I could tell Dad was exhausted, I liked being able to come and take care of Mom overnight, so he could get a good night’s sleep; or stay for a few days so he could take a respite trip.

I am glad Dad has been able to retire and be a full-time caregiver. I had a hard time imagining how they would be able to make that work, mostly due to Dad’s need to transition from such a busy work life, to being at home all the time. Although this is nothing like the retirement years I would have wished for them, I think it’s the best it can be given the circumstances. Dad is the best caregiver and advocate for Mom that she could possibly have.

As I read this response from Lisa, I especially appreciated the flashback to Mary Ann’s wicked sense of humor.  I suppose for all of us, losing the person who was without a doubt the center of our household has been the hardest part.  Mary Ann has always been a force to be reckoned with — not in an overbearing way, just by virtue of her personality and her presence.   If it has ever been true about anyone, it is true about Mary Ann — they broke the mold after she was made. 

As I said in the post two evenings ago, we have two remarkable children. Lisa has been a friend to her Mom even through the teen years.  Lisa’s laugh is contagious and Mary Ann could always manage to say or so something that set it off.  She has been a great support to me with her wisdom and her counsel and her concern.

Micah is the sparkle in his Mother’s eyes.  As I mentioned two nights ago, she lights up when he is around.  Micah is the one who was at the hospital when I finally broke down after a week of sleepless nights.  He just held me as I sobbed.  When he was with us during conversations with the doctors, his questions were insightful and probing, getting from the doctors just the information we needed. 

Yes, we have ended up with far better children than we deserved.  By the way, that is my observation only.  Whenever she heard me say that, Mary Ann would claim full responsibility for how well they came out. 

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

 

June 30, 2009

Wildlife Moves from Deck to Bedroom!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , |
Leave a Comment 

Why did I talk so much about the mother raccoon and her two babies that visited our deck the other night???  I should have known better.  For the last hour Mary Ann has been seeing a baby raccoon or two under the bed, on the side of the bed, in the bed all around her.  It may be a very long night.

Last night was not a good one.  It was very late before she finally settled.  It pretty much never fails that the day after a difficult night, the hallucinations ramp up in activity.

I feel pretty helpless when this happens.  There is nothing I can say to convince her that they aren’t there.  I know the rule is not to tell the person seeing the hallucinations that they aren’t real.  I have searched for them in the covers and under the bed and around her back as she lay in bed, assuring her that they are not there.  If I agree that they are there, there is no hope of her getting any sleep.  I am watching her on the monitor and will head in to reassure her whenever she appears to be bothered by the….whoops, there she goes.

When I got to the bedroom, she asked if the people (there were no people) had left yet, used the commode, while she holding the corner of the sheet she said she hated the fabric hanging there, she got back into bed and told me she was going to send the raccoons over to my bed.  I encouraged her to do so…back to the bedroom again.  This time a Tums was needed.

I have read hundreds of posts from those in the Lewy Body Dementia Spouses group.  It is pretty unsettling to read how many who have LBD (Mary Ann’s Parkinson’s Disease Dementia is a dementia with Lewy Bodies) have a much worse problem with hallucinations.  I don’t relish the time when her hallucinations become worse and more constant, assuming that happens.  Given recent experience, it appears likely that it will happen.

If these hallucinations don’t subside in a couple of days, I will phone the Neurologist to see about increasing the Seroquel.  There are some scary risks that come with Seroquel, but so far she has not had problems with it.

For tonight’s challenge, I am heading off to bed early to see if my presence will help. She has been quiet for a while.  Hopefully she will get a good night’s sleep.  Tomorrow is another day.  Maybe the raccoons will have left the bedroom and returned to the deck.

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.

 

June 8, 2009

Caregivers Need to Vent Frustrations.

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
[6] Comments 

Mary Ann and I have now had our fifteen minutes of fame.  The article on our situation, with picture and all, was published  in our local paper yesterday morning.  The fame has already faded.  Oh well.  Who wants to be plagued by the paparazzi anyway. 

At various times during the day today, I stopped by the computer to read  posts on the spouses of those with Lewy Body Dementia online support group.  Since there is an expectation of confidentiality in that group, I will use no names. 

One member of the group wrote a very graphic and painful post, venting a level of frustration she feared would shock all of us.  She revealed a depth of pain that is almost beyond description.  What drove her to write was not just a passing moment of feeling sorry for herself.  It is hard to imagine anyone going through the impossible dynamics of her circumstances and surviving. 

What is more frightening is that no one was shocked at her shocking vent.  They understood.  She just put into words feelings that many in the group experience.  What is frightening about it is that it revealed just how much pain there is out there.  What is frightening about it is that those of us who are not yet experiencing the later stages of the dementia in our spouses have that level of pain to look forward to. 

One of my first thoughts was thanksgiving that Mary Ann has a comparatively mild level of dementia at this point in its progression.  We have a quality of life that would be the envy of many who are immersed in the worst of the dementia.  We can get out to eat — maybe a little messiness, but the job gets done.  Mary Ann’s memory is still better than mine.  That is pretty scary!   Since she is lighter than I am; I can still provide the physical help needed to get basic needs met.  Our communication is limited, but it still happens.  We can travel, with some difficulty, but we can do it.  Mary Ann’s needs are still within the range of our friends who volunteer to spend time with her while I do other things.  Most nights she sleeps reasonably well. 

As I have revealed in some of these posts, we have frustrating challenges that push us to the limit.  We live in a narrow margin of functionality.  We are one fall away from the end of being able to manage here at home.  Any compromise to my health could destroy our system here with one another.  None of the other options out there is acceptable to either of us.  One or the other of them might become necessary, but they are still not acceptable. 

While the difficulty of our situation does not measure up to so many others’ situations, venting frustrations is still a necessary safety valve.  Those of us to do the caregiving and those who receive it need to release some pressure once in a while to stay sane! 

I am convinced that it is healthier to name the pain we are in once in a while, to admit to ourselves and whomever we trust enough to do so, that we just can’t handle it any more.  It is far healthier to vent than it is to try somehow to sustain the illusion that we are fine when we are not always fine.  We may want everyone to think we are noble, self-giving, saints who just love caring for our Loved One every moment of every day.   The price we will pay for maintaining that fiction will at some point be a psychic meltdown — probably a physical one too. 

The challenge is to find ways to vent our frustrations without hurting ourselves or anyone else.  One of the best ways seems to me to be just what the person in our online group did when she wrote out all those thoughts that seemed to her to be so horrible.   Another way to vent effectively would be to have a trusted friend or cluster of friends who can listen to some ranting and raving without getting upset with you, or worse yet, telling you that it isn’t as bad as you think. 

Some work out their frustrations in other ways.  The occasional, “oh fiddlesticks” or “gee willikers” spoken with great gusto can release a little tension.  Just make sure that the grandchildren are not within earshot.   One of my vents of choice is to string together a long, loud and involved rational explanation as to why what just happened should not have happened.  My kids just loved those lectures.  They would often say, “Dad, can we hear that lecture again, it would be so good for us.”

I have said this in former posts.  Taking the time to process what we are going through and writing about it in this blog has provided a surprisingly powerful mechanism for working out my frustrations.  Maybe it is as simple as talking the frustrations to death.  (And  you wonder why my posts are so long.)

There is a piece of reality that frees me to take off the rose-colored glasses, look past any illusions about my goodness, or strength of character, and expose the nastiness in me, the ugly character flaws.  I understand the One who made me to love me so powerfully that my nastiness, character flaws, even my doubts and anger are not strong enough to ward it off.  I can vent to my heart’s content and remain safe and secure, able to get on with life in a meaningful way after the safety valve has released some pressure. 

For those of you who do not share my understanding of reality, the same is so.  Setting aside the pretense and the illusions and facing down the harsh realities of who and what we are, provides us with a sort of reality therapy that allows us to get through the worst times and come out able to live meaningfully in the face of terrible circumstances. 

Caregivers need to vent frustrations.  Just don’t hurt yourself or anyone else when you do the venting!

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.

 

June 6, 2009

Caregivers, Why Bother to Plan Anything?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , |
[5] Comments 

She suggested it!  “Let’s go to Braum’s for ice cream.”  Understand, the closest Braum’s is in Emporia, Kansas, an hour’s drive on the Interstate.  We usually take more scenic roads resulting in closer to an hour and a half drive time. 

Noble husband that I am, I will make the sacrifice, drive us to Braum’s, and out of the goodness of my heart join her in eating a two scoop Hot Fudge Sundae topped with salted pecans, real whipped cream and a cherry on top.  Sometimes I surprise myself with my generosity. 

Here is the rub.  When Mary Ann suggested going, it was too late in the day and storms were coming.  Thinking through that sort of information and making a decision demands using what is referred to as the Executive Function of the brain.  The mild Parkinson’ s Disease Dementia that has recently been added to the Parkinson’s Disease has dimished that particular function. 

The plan then was to go the next day.   As the next day progressed a combination of intestinal activity and fainting (Orthostatic Hypotension) flipped the nap switch in her.  I say it that way because the fainting spells sometimes drain from her the capacity to be up and about.  When the nap switch flips, it is sometimes a challenge to get her to the bed and settled there.  She may crumple to the floor wherever she is when the need for a nap hits. 

The next day included an evening activity, the Parkinson’s Support Group.  There was no moving fast enough to get the trip in before the meeting.  The day after that (yesterday) we planned to go again.  The day was completely clear other than the outing to Braum’s.  The weather was spectacular.   It didn’t happen.  It was a nap that filled the time we were going to use to make the trip.  This time it was not that the nap switch flipped, but it was the need that comes more and more often. 

Parkinson’s Disease Dementia is a Dementia with Lewy Bodies.  It patterns itself differently than Alzheimer’s Dementia.  There is a different part of the brain affected.  One of the symptoms of the progression of the disease is daytime sleeping.  Some days there have been two naps.  The usual length of a nap is two to two and a half hours.  We never know when the need will arise.

Yesterday there was no trip to Braum’s.  Today, I was determined it would happen.  I planned to add another stop along the way.  I thought phoning a friend of Mary Ann’s to come along would make the trip more enjoyable.  Jeanne and Mary Ann enjoy each other, she helps when Mary Ann needs to use a public bathroom, and since Mary Ann is barely verbal, Jeanne adds to the conversation when we travel.   She was not able to join us for the trip, but I was still determined to go. 

Again, the day was beautiful.   We ate some lunch at home.  I made some surprisingly tasty chicken salad.  Those who have read many of the posts on this blog appreciate what a remarkable accomplishment it is when I make a meal, especially one that is fit for human consumption. 

Almost immediately following lunch, the nap need arose.  By the time Mary Ann awoke, the trip to Braum’s was again out of the question.

Why bother to plan anything?

I am a planner.  I get in my mind how the day will go, what needs to be done, and varying from that plan upsets my equilibrium.  The role of full time Caregiver has resulted in the dismantling  of my daily structure. 

Caregivers respond, they do not work a predetermined plan.  Mary Ann’s needs come when they come.  She cannot fill them herself.  That is my job.   The challenge is trying to figure out how to keep from going crazy since as a Caregiver, I have very little to say about what I will be doing and when I will be doing it. 

For eighteen years of my almost forty years in ministry before I retired, I worked with Youth.  The first three years in the ministry I taught religion classes and served as a Pastoral Counselor at a large parochial high school of some 900 students.  For the next fifteen years, working with Youth in a congregation was a major part of my portfolio.  When leading Youth activities and classes and retreats, I learned quickly that there needed to be a detailed plan in place but along with that plan a willingness to throw the plan out completely if circumstances demanded it.   

That is exactly the sort of planning needed to be the primary Caregiver for someone who needs help with most everything they do — without the Caregiver going crazy.  My goal from the day I retired has been to have options immediately available so that if Mary Ann’s needs eliminated whatever we had planned, something else could be substituted. 

What that means most of the time is that I need lots of small tasks that can be done here at the house while Mary Ann is napping, or interested in a televsion program.  The hardest part of adapting to this new pattern has been gaining the ability to let go of plans I have in my mind without becoming resentful and grumpy.  In that regard, I am still a work in progress. 

Today, when Mary Ann woke up, instead of heading for Braum’s an hour away, we went to the Baskin and Robbins on the other side of town, drove by the beautiful Ensley Gardens and came home.  A Hot Fudge Sundae made with Nutty Coconut ice cream with chopped nuts, whipped cream and a cherry on top goes a long way in calming the ruffled feathers of a planner whose plans have just been frustrated. 

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.

 

« Previous Page — Next Page »