Sources of Strength

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August 15, 2009

Caffeine: Cargiver’s Drug of Choice

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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As reported in the previous post, last night was pretty crazy until Mary Ann settled down around 12:30am.  Since that time, she has been awake only six hours of what has now been twenty-four.  She was awake for an hour early in the morning, an hour and a half late in the morning and three and a half hours in the late afternoon/early evening.  She seems to be sleeping soundly at the moment.   A portion of the time she was awake was spent in a very sleepy mode with her head down. 

My hope was that all the sleeping would give her mind a chance to rebuild those synaptic connections that had not had time to build since there had been some restless nights and a napless day yesterday.  My hope was that the rebuilding process would reduce or eliminate the hallucinations.  That hope was not realized during the few hours she was awake.  There were almost constant threads to be picked up and pulled off her hands.  She insisted that the bedspread that had in her mind been soiled by the raccoon last night be put in the washer.  Bedding needed to be washed anyway due to the very long midday nap without a bathroom break. 

It seems unlikely that she will be able to stay asleep throughout the night with all the daytime napping that happened.  We will see what tonight and tomorrow brings. 

One of the challenges for this and most other Caregivers is the challenge of dealing with being tired much of the time.  I am too proper and frugal to use illegal drugs to stay alert.  Actually, I don’t want to mess with my brain by putting foreign substances into it.   I have chosen to use something legal and familiar to stay alert — caffeine.  The delivery system that I use for getting the drug into my system is coffee.  I don’t do soft drinks.  I don’t use energy drinks spiked with large quantities of caffeine. I drink coffee, hot coffee, nothing added, no flavors, but not just any coffee.  I would not condescend to drink Starbuck’s.  I only drink coffees made with beans roasted to perfection locally. 

One of the owners of the business travels to the farms all over the world, especially Central and South America, and comes to know personally the local farmers and their families.  They are paid above fair trade standards with the agreement that the workers and the local community fund will benefit from the proceeds. 

The Baristas are well-trained, often winning at regional competitions and even participating in nationals.  The national Roasters’ Magazine designated them 2009 Roaster of the Year.  

Needless to say, I have developed an interest in the coffee that I use as the delivery system for my drug of choice, caffeine.  I have learned a little about the various ways of preparing the beans and the resulting characteristics of the coffees made from those beans.  If I sound pretentious on the subject, you have made an accurate assessment.  I know far less than most who are interested in good coffees.  I just like to talk about it, use the jargon and pretend to know stuff. 

As to what any of this has to do with Caregiving, like the raccoons of former posts, it is my entertainment.  The caffeine does help me stay alert when I am tired.  That part is a real benefit when needing to stay at the various tasks associated with filling Mary Ann’s needs and maintaining the household.  Even if drinking a good cup of gourmet coffee is mostly about the placebo effect, fooling me into thinking I am more alert, it still works!  

One of the difficulties of being so picky about the coffee is that when I am stuck at home, I am in trouble.  Yes, I can pull out the decades old Mr. Coffee and make a pot.  It is not the same as getting it from PT’s.  One reason is that they can brew the coffee at a hotter temperature (am I a coffee snob or what) than home coffee pots.  Home pots brew at about 160-165 degrees, while they brew at 190-200 degrees. 

Now for the really good news!  There is a coffee maker manufactured by hand in Holland that meets the professional brewers’ standards.  It is a Technivorm coffee maker.  Needless to say, they are not cheap.  Through a very unusual course of events, I was able to purchase one at a very steep discount. 

This all sounds pretty silly in the face of the real challenges of daily life, especially for full time Caregivers.  It is not at all silly, when completely trapped at home with no access to the stimulating liquid that provides a little pleasure. 

Now, using the new grinder (a Conical Burr Grinder, also steeply discounted) to provide exactly the right texture to the coffee grounds, I can make a pot of coffee brewed at 190 to 200 degrees, using freshly roasted beans, the best available, allowing the flavor to bloom before opening the bin to let the brewed coffee slowly fall into the thermal pitcher. 

Today, we were not able to set foot outside the house.  In spite of that, the day was bearable.  We had bought a half gallon of ice cream yesterday, so Mary Ann could have a big bowl this afternoon during one of the times she was awake.  She had leftover cheese bread from our favorite pizza place, left from yesterday’s short outing.  I had a good cup of coffee to lift my spirits.   The birds were singing and the waterfall was spashing over the rocks.  Trapped, but surviving well. 

http://www.ptscoffee.com/  Check them out.  You won’t be disappointed!

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 8, 2009

Quadriplegic’s Self-Acceptance Teaches Us All

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength | Tags: , , , , , , , , , , , |
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He was just a teenager having fun.  He just didn’t know how shallow it was.  He did exactly the wrong thing, tucked his chin down and dove in.  That was twenty-five years ago.  He was eighteen years old when it happened.

By now he doesn’t really consider the life he might have had, who he might have been had that day so long ago gone differently.  He is who he is, and he doesn’t dwell on what might have been.

We attended our local Parkinson’s Disease Support Group meeting last evening.  Rod Kelley was the speaker.  He was in a manual wheelchair, with very limited use of his hands.  He drove to the meeting and spoke with honesty and confidence.  While his was the result of a diving injury (shattered C6), his journey contained elements that resonated with those gathered there.

Rod spoke of the wonderful cocoon of support that surrounded him after the accident and his return after many weeks of rehabilitation.  He was accepted back into his circle of friends.  If anything it was expanded as people came out to join in the project of helping him.

As time went by and others moved on with their lives, the reality of what was lost sunk in as he attempted to make a new life for himself, forced to take a different path from the one he was on before the accident.  At that point a bout of depression set in.  It was some straight truth from his Mother that broke through to the heart of his will to live life to the fullest refusing to be defeated by his uncooperative limbs.

What struck me as I listened to him was that the key to his choosing life was a simple acceptance of himself just as he was.  That acceptance freed him to grow and challenge the limitations.

He shared that often his speaking engagements are with Children and Youth.  Having worked with Youth for almost half of my ministry, I remember just how those I served struggled to find self-acceptance.  Many were terrified of not being accepted by others to whom they gave the power to determine their value.  Most sought to discover exactly what to say and do, what to wear, how to wear their hair, with whom to be seen, so that they would not become the object of derision, or worse yet, simply a cipher.

Rod’s message of finding self-acceptance in the body of a Quadriplegic seems to me to have potential for freeing those who see themselves as unacceptable for any reason.

Mary Ann has had to find a way to accept her value having lost many of the abilities that had provided a sense of worth.  In her case, the Parkinson’s provided the challenge to her self-acceptance.  She seems to have done remarkably well at moving through her days with a certain confidence about who she is.

When I retired, I began a journey toward a new understanding of myself that did not revolve around my profession.  The journey toward self-acceptance is not over.

Each of us as we move from one time to another in our lives, leave behind certain abilities, relationships, untraveled paths.  We all need to find the way to some level of self-acceptance to be free to live.

The courage of a Quadriplegic informs all of us as uncooperative limbs cease to define his worth and value.  He is what he is.  Knowing that, he has become more than he could have imagined.

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 26, 2009

Are we being too cautious?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , |
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This morning I had a chance to go up to favorite spot I like to visit when there is a Sunday morning Volunteer.  (By the way, those who worry that we might not be getting to church, we attend the evening service on Sundays.)  I relish the chance for a little time to do some meditative reading, have some quiet time, and soak in the scenery and the wildlife, especially the birds.  I walked along the edge of a marsh below the dam, as I often do when I head up to the lake.  There are some Red-Winged Blackbirds that send out alarms and do fly-overs every time I take that path.  I am not sure what they think I am going to do, but they are determined that whatever it is, I don’t do it.

Something I wrote in my post yesterday came to mind as I spent the time away this morning.  Yesterday, I listed some of the things that I am not doing, options I have given up on for the moment, as we are living the life we have at the moment.  As I thought about that, I began to wonder if in the course of letting go of those options, I am also cutting back too much on what Mary Ann and I try to do to add interest to our lives.

While I have posted often with attitude, attitude that left the impression we will tackle anything, the truth is, I am often reluctant to push the envelop of our apparent limitations.

The disincentives that come with going out of the house to do much of anything seem pretty powerful.  I am afraid that sometimes I give those disincentives more power than they deserve.  It is so much easier to just go with the flow and do as little as possible that challenges us than it is to do the work of getting out.  I have to admit to just plain laziness.

Sometimes Mary Ann doesn’t want to tackle going out and needs for me to be more assertive.  Sometimes Mary Ann seems oblivious to the all the challenges and wants to go and do something, but I am the one that thinks of all the reasons not to do it. Sometimes it is just a matter of being tired because we have had a rough night, as in the night before last.

I don’t want Mary Ann to miss out on activities we are still able to do that may no longer be possible for us to do in the not too distant future.  At the same time, we both have to accept that one of the consequences of the Parkinon’s presence in our lives is that I need to do more of the work for both of us when we go out and participate in activities.  We cannot void those consequences and live the life we might have had if the Parkinson’s had not joined us.

Just as I have to accept what I need to do for Mary Ann to have a decent quality of life, Mary Ann has to accept that I have limited stamina and, frankly, have a lazy streak in me.  Not only do we need to live the life we have, not the one we wish we had, but we have to accept the spouse we have, not the one we would like him/her to be.   Otherwise we will always be disappointed with one another.

I won’t presume to speak for Mary Ann, but I have the spouse I want.  I accept and embrace all that comes with our life together.  In spite of the presence of the Parkinson’s in our lives, I want Mary Ann to have the best quality of life she can have.  I need to be careful not to be too cautious so that we do have the most fulfilling life we can given our circumstances.  At the same time, we need to accept each other’s limitations and imperfections, and not spend our time upset about what we are missing.  Our time is too precious to waste on regrets.

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 25, 2009

We Can only Live the Life We Have.

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

 

July 19, 2009

Blood Pressure Controls seem Broken

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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She sat on the bed,  fainted, and just slipped off on to the floor.  She had fainted moments before on the toilet stool.  I got her on to the bed, grateful for the physical strength that remains in this small in stature, 66 year old, pot-bellied frame. 

I finally just laid her down on the bed to nap.  It was her second nap of the day.   The third one came early in the evening.  We did manage to get out for pancakes during the mid-afternoon. 

As is obvious to those who read these posts, this story is getting to be an old one.  It is beginning to suggest that the Autonomic Nervous System is just unable to sustain her blood pressure consistently.  The muscles around her arteries just won’t respond as they should, at least as quickly as they should. 

We have increase the medicine that raises the blood pressure, but have to be cautious about that, since years of high blood pressure have already weakened her heart and kidneys.  The Cardiologist will get another call on Monday. 

The Cardiologist will want to know what her blood pressure has been running.  It is no small task to get a read on her blood pressure.  The battery operated blood pressure monitors are pretty much useless when trying to measure Mary Ann’s blood pressure.  More often than not, there is just an error message.  Either her BP is too high and cannot be measured, or the dyskinetic movements create noises in her body that confuse it. 

I have purchased a stethoscope and pressure band to take her blood pressure myself.  I can get the meter pressure high enough, but the variety of sounds have frustrated my ability to get a good reading.  At times I have been able to do it — not today.  Gratefully we have a parish nurse at our congregation.  She cares very much for Mary Ann and will come and help whenever we need her and it is possible for her to come.

I called Parish Nurse Margaret, who came over to take her blood pressure.  As always, she brought flowers from their flower garden and vegetables from their vegetable garden. 

She arived shortly after Mary Ann had taken her mid-day dose of the blood pressure raising medicine.  Sitting in her chair, her BP was 140/70.  Then we walked into the bedroom to test the effect of standing up and walking.  She sat on the bed and Margaret took it again.  Mary Ann was on the verge of a fainting spell.  Her BP was 108/78.  The lower number was higher than I expected, but she said that when the two numbers are too close to together it can cause the fainting.   

Then Mary Ann laid on the bed while her BP was taken.  That is when it is usually highest, since gravity is not pulling the blood to her feet.  I wanted to measure her BP at what would be likely to be its highest point.  Knowing that measurement would help provide the Cardiologist with the information needed to make a good decision on whether or not it would be safe to increase the medicine that raises her BP to keep her from fainting.  Lying down her BP was 142/100. 

After that Mary Ann moved into her transfer chair, and we moved to the living room.  Margaret took her BP two more times as we talked for a while.  Those readings were 140/80 and 150/8o.  By the way throughout the measurements there were no missed heart beats and her heart rate remained steady at 60 beats per minute. 

With all this information the question remains, is her Autonomic Nervous System’s ability to control her blood pressure simply broken, beyond correction, or can meds provide a return to the quality of life we had a few weeks ago.  A question that follows along beside that one is, will my physical strength be adequate to hold her up with one arm while she is fainting as I pull up clothes with the other hand after using the commode.  When will we pass the limits of my ability to handle her physically?

At the moment, I am still one tough cookie.  I can do it now.  That is all I know.  It is all I need to know.   I’ll deal with tomorrow when it arrives.    I have neither the time nor the energy to waste worrying about what it might bring. 

 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 15, 2009

Can Improvements be Stressful too?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength | Tags: , , , , , , , , , , , , , , , , , , , |
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It was disturbing to look directly at her face during a severe episode of fainting.  Her eyes were open but completely blank and empty of any indication of her presence.  She was fighting for air, breathing through her nose, making the ugly sounds that usually come when she goes out completely for a time.  I don’t suppose it was any worse than the worst we have experienced almost daily lately, but this is the first time her head was back so that I could see her face.  Mine was only inches away since I have to use my body to keep her from falling forward.  I guess every other time, her head has been down, so that I only could only see the top of her head or her forehead.  I always thought her eyes were closed during these episodes. 

I guess it was just an encounter with the full reality of what goes on when someone faints.  It is hard to watch her fighting so hard for air.  I am grateful that she never remembers the episodes. 

With that said, actually, today started out better than any in the last couple of weeks.  She had no fainting spells from the time she got up and had pills and breakfast, through getting dressed, and some intestinal activity that has almost always included or ended with fainting.  She did decide to lay down for the usual morning nap, but it was not precipitated by fainting as has been so most of the last days. 

The major fainting spell came after the nap.  There were some other episodes during the day, but not as intense as the first.  Somehow during these last two days  it has seemed as if we are on an upturn from where were heading through last Sunday. 

As you can tell from what I described at the beginning of this post, it is not much of an upturn if it is one.  Especially this morning before the severe episode of fainting, I was feeling as if Mary Ann was rallying.  She may still be doing so.  The thought of her rallying brought to mind something I have gone through with others and have experienced myself. 

As much as any of us who is caring for a Loved One with a chronic degenerative disease or a terminal disease wants our Loved One to improve rather than decline, there is an odd sort of emotional stress that comes with the improvement. 

What happens when there is a decline is that there is a sort of grieving that goes on.  There is a jouney through some or all of the stages of grief.  If the decline is severe and long enough, the Caregiver can make it all the way to acceptance. If the Loved One then rallies, it is sometimes hard to “unaccept” the decline. 

I have been coming to accept that we are in a new stage in the disease process maybe one that is leading closer to the inevitable conclusion sooner rather than later.  Since we have lived on this roller coaster for so many years, I do not simply let go and commit to anything about how permanent a particular change is or how far along we are in the progression of the disease.  It is still hard to let go of the feelings that start to grow in the gut and then realign with a new reality when things improve. 

At the moment, I am not sure how far the decline has taken Mary Ann, whether it is turning around, whether we are at a new normal, whether meds can bring her back to a former level and, if so, for how long. 

The truth is, we don’t actually need to know the answers to those questions.  We both just need to deal with whatever comes each day, making plans, fully aware that we may not be able to work the plans we have  made. 

On this roller coaster, it is scary when we are dropping down a steep decline in the ride, and it is a struggle to adjust when the ride turns us around takes us up out of that decline.    Gratefully on the upswing or downswing we feel secure in the spiritual grounding that sustains us.  It frees us to have all the complex emotions and fears, live with them and through them, without despair.  It is just our life.  The specifics may differ, but it is not unlike the lives of most of us.  There are ups and downs and in betweens.  It is just life. 

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 13, 2009

Stresses Converge

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Sources of Strength | Tags: , , , , , , , , , , , , , , , , , , , |
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The decline continues as there is still no evidence that increased medication is impacting the multiple episodes of fainting.  In the morning, Mary Ann has continued to faint even while just sitting in her chair.   After the long morning nap there is some improvement, but each day there seems to be less and less improvement.  She can’t stand up for more than a minute or two without dropping back into the chair.  Occasionally later in the day she can make it twenty or thirty feet.  

Today I had the wonderful privilege of Ordaining into the ministry a young man I respect very much.  It was a powerful and meaningful experience for all of us.  The Service went well.  It was especially emotional since his Mother had died a few years ago of a form of Alzheimer’s Disease.  She would have been proud beyond words. 

Having been retired for a little over a year now, today has clarified something about the nature of the Pastoral Ministry.  Leading worship services, when done weekly is no small task, but the regularity helps, especially for someone who is terrified of making a foolish mistake in public. 

As today approached, I found myself deeply apprehensive, especially since it was an Ordination service, different from the Sunday norm.  I couldn’t count on auto pilot to get through it.  It felt like what I would imagine a tight wire artist would feel like if after a year of not walking the wire, he was stepping out on a wire stretched over a canyon with no safety net.  I realize I wouldn’t actually be hurt physically if I made some foolish mistake, but rational thinking has little impact when the fear center takes over. 

The stress of fears about where Mary Ann’s disease is taking her so quickly these last days and the stress of deep seated apprehensions about the Service today converged, making for a very difficult weekend.

It is painfully obvious, that stress complicates caregiving whatever the source of the stress.  It took a great deal of effort to maintain a level of patience through this time.  It helped that by now I know myself well enough to recognize the real seat of my frustration.  It is not at Mary Ann, it was simple fear struggling to find a way to express itself.  

As for today, there was a very capable Volunteer from the congregation during the morning hours, allowing me to do some preparations for the service.  Then this afternoon, while I was at church before, during and after the service, doing what had stirred the apprehensions, there was a paid Companion Care person from a local agency, Home Instead.  She had been with Mary Ann most every Sunday morning the last year or two before I retired.  I could leave the house confident that Mary Ann would be in good hands while I was gone.

One significance of doing the Ordination today is that a month from now will be the fortieth anniversary of my Ordination.  Forty years is the normal length of the career of a pastor as a full time paid worker.  I finished my professional career, Karl began his.  All sorts of emotions were stirring as he took over the last portion of the service as an Ordained Pastor. 

One of the most powerful moments was the choir singing a piece called the First Song of Isaiah.  It is a piece strongly associated with Karl’s Mother while she was alive and at her death.  As they sang and I thought of Tina, my fears about where Mary Ann’s Parkinson’s is now taking her folded into the moment. 

We are on a roller coaster that may go up and down many times for years to come before we move into the endgame.  There are moments when the stresses converge.  I am grateful that we have a framework built on deep spiritual footings.  That is what allows us to live each day as fully as possible in the face of whatever comes our way.

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 1, 2009

Caregivers Need Eyes to See and Ears to Hear

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , |
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It changed my whole perception of reality.  It only took thirty minutes to do it.  Nothing has looked the same since.  “A Time to See” is the name of the educational film made by Reinholdt Marxhausen and published in 1985. 

Reinholdt Marxhausen was extraordinarily gifted in the visual arts.  He saw things others could never have seen had he not pointed them out.  There were bottles on the window sill in his kitchen over the sink.  They were just bottles — not to Reinholdt Marxhausen.  They were an adventure in light and shadows and colors and darkness, changing character at different times during the day, different times during the year. 

Alzheimer’s Dementia has stolen from him his extraordinary gifts in the visual arts.  His impact has continued in many of his students and all who have known him.  I only know him through friends and that film that made such a lasting impression on me. 

What brought the film to mind was writing the sermon for the ordination of Karl into the ministry.  Karl has been a student where Marxhausen taught.  Karl was influenced by the legacy of Reinholdt Marxhausen when he was the the peak of his ability. 

For me, the center of the legacy is the recognition that what a person sees depends on his/her ability to look past the object to its relationship with what is around it.  The capacity to really see, allows the most ordinary found items to become extraordinary as shadows and colors and shapes and textures suggest something far more than ordinary. 

There is a commonality about the story line in the lives of Reinholdt and Karl and PeterT (author of this blog).   Reinholdt has seen his ability to make art diminish as Alzheimer’s has taken its toll.  Karl’s mother died at the age of fifty.  At one point she was diagnosed with Pick’s Disease, a form of Alzheimer’s.  Karl’s Grandmother died of what appeared to be a form of Alzheimer’s Dementia.  My wife, Mary Ann, has been diagnosed with Parkinson’s Disease Dementia. 

The objective realities in our lives hardly present beauty to the beholder, at least at first glance.  There is a painful ugliness in the world of Dementia whatever the specific diagnosis.  Karl and I have learned from Reinholdt that it is a time to see.  It is time to look at objective and sometimes very painful realities and see more than the obvious.  We need eyes to see what lies behind, above, below, and beside what we have experienced and are experiencing.  We need to see how what lies before us and around us looks from different angles.  We need to see the colors and shapes and textures, listen to the sounds of what we encounter.  We need to allow the possibility that there is more than meets the eye lurking what we have and are going through. 

There is beauty to be found, there is meaning to be found.  It can be seen if we have eyes to see.  It is often said that beauty is in the eye of the beholder.  I don’t suppose beauty really exists until we add the capacity to see it, to hear it.  If there will be beauty and meaning in our lives, especially those of us who deal with dementia, the beauty will come from within us as we look at what we are experiencing and see it for more than what first meets the eye.

My life has been enriched by taking time to really see what is around me.  Karl has seen what his Mother and Grandmother with through and has grown a gentle strength and wisdom beyond his years. 

Having said all of that, I am now struggling with finding the beauty in three hours of trips into the bedroom every few minutes to deal with one need or another, moments ago (1:30am) the need for some food, followed by the need for some water, after multiple turns in bed, trips to the commode, adjustments of the sheet and blanket and a few concerns with the wildlife in the bed.  Right now, I would find beauty in a wife finally getting to sleep!!

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 26, 2009

Caregiver needs Deck Therapy

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , |
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Almost done!  The four level waterfall needs only the one watt light fixtures that produce twenty watts of light at the base of each of the four levels.  They will be installed tomorrow.  

The plants are now all in place.  Brad even brought some from his own yard to put in an area above the lined portion, his gift to us.  His Dad has Parkinson’s and we have come to know his parents at the Parkinson’s Support Group meetings.  Brad has put forth extra effort at every turn.  The end result is more than Mary Ann and I could have hoped for. 

The Mallards are now in duck heaven – our back yard.  They were hanging out there last evening and came today five minutes after Brad and his crew left. 

I also hung out on the deck last evening listening to the waterfall as rain and thunder and lightening came through.   While it was raining I sat on the portion of the deck that is covered with a section of the roof.  The wind cooled the air so that the experience was wonderful. 

Mary Ann and I spent some time this morning on the deck before the day heated up.  I got her out to a lawn chair to sit for a while.  Then she got up and walked to the rail to get a better look at the waterfall.  As she started to faint, I tried to pull a chair over behind her.  It didn’t work.  I let her down to the deck.  As she lay there, I went into the house and got the transfer chair so that I would eventually be able to get her into the house.  During the morning, before, and then out on the deck she had had some small fainting spells.  The one at the rail was a substantial one, one that turns into a sort of siezure.  As usual, there was some intestinal activity that followed.  Some time I intend to ask our Gastroenterologist for an explanation of that phenomenon. 

Last night, the third in a row, Mary Ann had trouble settling down and getting to sleep.  As expected, the hallucinations have been a little more active the past few days.

The reason I titled this post “Caregiver needs Deck Therapy” is that today was a pop up day.  Most of the times I went out to talk with Brad and the crew about something, I very specifically asked Mary Ann to stay seated while I was outside.  Of course I made sure that she had ice water, the television was tuned to something she liked, and that she didn’t need to get to the bathroom.  For the most part she did as I asked during those times. 

Other than that, Mary Ann popped up every few minutes.  When I answered the phone or made a phone call, she was up.  When I went into the kitchen to put things in the dishwasher she popped up.  When I tried to get food ready for her she popped up.  When I went to the bathroom she popped up.  It seemed that pretty much every time I sat down she popped up. 

As I have shared many times, falling is a major issue.  The fact that this was also a fainting day made it even more challenging.  Last I heard, aspirating food and falling are the two most likely events to end the life of someone with Parkinson’s.  People don’t die of Parkinson’s itself.   Mary Ann was falling generally more than once a day until the torn stitches a few weeks ago.  Since then she has fallen very seldom, at least by the pre-stitch-tearing measure. 

I realized today the reason the falls have diminished so much.  I am moving very quickly to be right there whenever she stands up to walk.  I offer my elbow for her to hold, thereby stabilizing herself while walking, or I put my hand gently on the gait belt she always wears so that I can help her regain her equilibrium if she gets off balance.  The A-V monitor helps me anticipate her getting up so that I can be there by the time she is up. 

The challenge is that I can’t keep her in view every moment.  The monitor has to be plugged in and within view for me to use it.  I can’t move it with me every time I walk into the other room, head down the hall just for a moment, or go to the bathroom.  At the first sound of movement, I move as fast as I can, sometimes even managing to get this sixty-six year old body to run, to get where she is before she falls. 

Today, I must have jumped and run thirty or forty times.  That is only a guess; it may have been a thousand times!  While as her Caregiver I should just take that in stride, if every day were like today, I am not sure I could do it.  Not long ago I used the metaphor of a marionette whose strings were being pulled by someone else as a  way to describe the feelings of being a full time Caregiver.  That was the sensation today.  She popped up and my arms and legs moved. 

I needed some time on the deck this evening.  The residual heat from the day made it much less bearable than last evening.  That respite and this post are my way of settling down and allowing the frustration to dissipate.  I understand that Mary Ann’s popping up is not a malicious attempt at making my life difficult.  In her mind it has nothing to do with me.  It is my problem that I come running when she gets up.  I suppose, if that is what she is thinking, she is right.  Nonetheless, the truth is, I need to keep her from falling to the degree it is possible not only to keep her safe but to keep my life from becoming more difficult.  If she hurts herself, it hurts both of us.  And, yes, while in my most rational moments I recognize that the disease is the cause of this annoying behavior, sometimes it feels as if she doesn’t care what impact her actions have on me. 

Today is done.  There have been many good moments along with the frustrating ones.  I celebrate the new retreat center behind our house.  I suspect that there will be need for some Deck Therapy tomorrow.  Then there will be lights!

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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