November 15, 2009

She is Eating Better

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The night went pretty well in spite of the fact that Mary Ann had long naps, and ended up getting up from the last one only long enough to change for bed and have a snack container of applesauce.

While having no supper last night has a lot to do with it, her appetite was good this morning.  She got up exceedingly early again (at least it seems so to me).  She ate a good breakfast at about 7am.  Then at about 9:30am, she asked for a sandwich.  She ate what she normally eats for lunch, half of a pretty good sized sandwich, lots of chips, Pepsi and Mary’s Jello dish (Cool Whip, lime Jello and cottage cheese) for dessert.

She has been down for a nap since about 10:30am.  It is 12:30pm now.  Actually, I was glad for the nap.  She had been in pop up mode for the morning.  When she is in pop up mode I am reluctant to head in and take a shower, expecting her to get up and fall.  She had at least one fainting spell this morning.

She got up shortly after 12:30pm.  Not too long thereafter we headed out to do some shopping for grandchildren’s birthday presents.  Mary Ann surprised me by being willing to go into Barnes and Noble and then Walmart to shop.  She had declined doing so yesterday.

We followed the shopping with a visit to Perkin’s.  I have been planning this trip as soon as she seemed to be ready to tackle eating in public.  I purposely planned to start with this spot, since she always orders the Buttermilk Three pancakes from the Senior menu, along with a half order of bacon.  I spread the butter, cut the pancakes into bite-sized pieces and add the syrup.  She can handle the bacon with her fingers.  She managed to eat about half the pancakes and all the bacon.  She was not willing to let me help her with the rest of the pancakes.  She was really struggling to manage the process of getting the pieces into her mouth.

This was her third meal today!  I am encouraged by that.  Through mention of it in passing in an online post, I was reminded that Exelon (she wears a 24hr patch) can in some cases cause anorexia.  Another side effect (among many) can be diarrhea.  That reminder caused me to pause a moment with the possibility that some of what Mary Ann is experiencing might have to do with the Exelon.  She has been taking it for over a year now if I am remembering correctly.  I suppose the food, sleep issues and meds at the hospital might have affected the way she metabolizes the Exelon, triggering a change is how she reacts to it.

At the moment, I am still giving plenty of time for her to return to the pre-hospital level of functionality.  I don’t want to make (or recommend) significant changes in treatment until it is clear that her symptom changes are here to stay.

Mary Ann had a snack of Tapioca pudding and went to bed at about 6:30pm.  I am hoping that she was up long enough today to allow her to sleep well tonight. Since there is not always a correlation between the amount of sleep during the day and the quality of sleep at night, we will just have to wait and see.

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

 

September 21, 2009

We Have Food!!!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
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Maybe that is a little dramatic — three exclamation points — but we do now have a number of new items of food in the freezer.  While our Daughter, Lisa, stayed with Mary Ann for the three days I retreated to Oklahoma, she made lots of things that are within my cooking comfort zone and put them in the freezer.  She wrote the preparation directions on pieces of paper and put them with each item.  Gratefully, they are mostly the kind of directions that say, thaw, cook in oven for an hour at 350 degrees.  I can handle that!

Pete and Carla stopped by with a meal this noon.  They are very thoughtful folks.  I was sorry to miss seeing them since I was at the lake while Volunteer Jan spent time with Mary Ann. Jan and Mary Ann seem to enjoy each other’s company.  This afternoon Elaine came by, picked up Mary Ann and took her to the Quilt Show.  Mary Ann loved making quilts for a number of years.  She especially liked piecing the tops together.  She spent two years hand stitching the quilting on her first quilt, a queen sized sampler quilt.  After that, she took them to be machine quilted once she got the tops pieced. It has been hard for Mary Ann to accept the loss of the ability to make quilts.  After such a busy day, Mary Ann crashed late this afternoon, so the evening service at church was not an option for us.

This morning’s time at the lake provided a couple of interesting treats in observing wildlife.  The first is a repeat of an encounter I had a few weeks ago.  Again today there were two Ospreys sailing overhead.  One came right over the car, so I got a very good look at him through the binoculars.

I made my usual visit to the Delaware Marsh, which now has very little visible water in it.  The area that I walk has one large puddle left.  As I approached it from a distance, walking a on tall ridge alongside the marsh, the water in the puddle seemed to be almost boiling with activity.  When I focused the binoculars on the mud sided puddle, it was boiling, not from heat but from the movement of snakes, maybe a dozen of them. They were twisting and turning rapidly, in constant motion.

After watching a while, it became apparent what was going on.  The water had dried up in most of the area, leaving that large puddle as the last, very confined, place where the frogs and fish were trapped.  While I am not absolutely sure about the fish, I could see the frogs jumping out of the water, flying into the air, with snakes in speedy pursuit.

Some of the snakes were pretty large, at least two or three feet long — some probably longer.  The snakes began slithering off in the mud and marsh grass as I approached.  One large snake and one medium sized snake remained in the mud at the edge of the water even though I was not far away.  As far as I can tell, looking online, they were white bellied or yellow bellied water snakes.  They did not have the telltale triangular head of a venomous snake.  While I am not particularly fearful of snakes, I kept my distance.  The binoculars provided as good a look as I would get even if I tried moving closer.  I am sure they would have moved away quickly if I had climbed down the ridge into the marsh.  My visit to that puddle probably provided a stay of execution for some frogs and fish.  I doubt that the stay will be for long.

Uh-oh.  There seem to be signs of restlessness being revealed by the video monitor.  I hope Mary Ann sleeps well tonight since tomorrow includes two different Sonograms, heart and carotid artery.  We always hope for no change in the condition of both.  Blocked heart arteries, some weakened heart muscle and a dented and rough surface on a large lesion on one side of her carotid artery keep us aware of the harsh realities of her condition.

Each day is a gift!

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.

 

September 12, 2009

Bad Day Follows Good Day!

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I am not sure I should be writing a post at the moment.  Maybe later in the day will be better.  At the moment she is napping, and I am able to be at the computer to write.  Last night’s post was almost euphoric after the great trip in the country.  I mentioned before closing that Mary Ann was restless.  She was up every few minutes until about 4am.  Then she insisted on getting up at 8:30am after three or four times up to use the commode between the 4am and 8:30am.

The needs began immediately.  As always, after a sleepless night the hallucinations have been almost constant, resulting it lots of time spent trying to pick up and throw away threads.  At one point as she was sitting at the table preparing to take meds and eat, she asked what the pink mesh was about.  She was convinced that she had it in her hands.

When she has had such a night and gets up early and stays up, there is oddly a great deal of lucidity intertwined with the hallucinations.  She is sometimes almost adversarial.  The restlessness has continued throughout the day up to the nap.  She has been popping up without warning almost constantly.  If I am out of sight for a moment, it is almost a certainty that she will get up.  That means even walking out of the room to get something for her won’t work.

I have asked in every way I know that she let me carry cups and glasses of liquid, since balance and fainting are issues.  Gratefully, it was water and not Pepsi in the cup when she went down, and, gratefully, she was not hurt.  Then there is the button by the toilet stool.  As always I asked that she push it before getting up to avoid falling in the bathroom.  I asked very slowly and carefully waiting to hear her agree to do so, out loud — which she did.  By the time I came back to check, she was half way across the bathroom with her slacks gathered around her ankles.

Last night and today provided a picture of how our lives are now being lived.  Mary Ann’s wants and needs at any given moment in the twenty-four hours of each day determine what I do and when I do it, no matter what my needs are or how I feel.  I have chosen this role, so whining about it is pretty futile.

What increases the level of frustration on a day like today is that there is no one with whom to be angry, no one to blame.  While I am not always shy about letting my feelings be clear, most of the time I do what needs to be done without complaint, and even try to be nurturing when I do it.  It is not Mary Ann’s fault that we are in this situation.  I am not a saint, but it is not my fault either.  Problems like this are not God’s idea of a good time.  God gets blamed for all sorts of things that were not part of the original plan, while often getting no credit for the wonder of life.  God doesn’t play games with folks.  Circumstances like ours happen to good people and bad people and people like us who have both good stuff and bad stuff in us.

I am grateful for yesterday, for a good day, some pleasure for both of us.  I am frustrated today, and struggling to keep it all in perspective.  Writing this post helps give some definition to the day that allows it to begin simply to be a challenging day, not a symbol of our entire life.  There is always tomorrow.

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.

 

September 1, 2009

Missed the Parkinson’s Symposium

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , |
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I got up at 5:30am on Saturday, showered, dressed and was ready by five minutes to 6:00am to start the process of getting ready to go to Kansas City for the Parkinson’s Symposium.  We would have to be on the road by 7:30am to make it on time.  I had already complained to the Dr. about the early start time for the target audience who have mobility and sleep problems.  He said the issue was finishing before lunch.  Registration was at 8am and the program started at 9am.  Living an hour and a quarter away added to the time issue.

Since I thought maybe Mary Ann could get ready in an hour (normally including morning chores, the minimum prep time is two hours), I let her sleep another half hour.   At about 6:30am, as I helped her to the commode, she said, let’s stay home.   I knew it would not work to try to force her to go. 

I had initiated plans for a luncheon with friends in Kansas City to celebrate two birthdays members of the group were having.  I told her that at least we ought to go to KC in time for that meal.  After all, I had started the process of arranging the meal out.  She agreed.  We both went back to bed for a couple more hours. 

It was good to visit with friends of thirty-five years.  Even though we are only an hour or so from that crew, we end up getting together only four or five times a year, if that. 

For a variety of reasons, the weekend seemed to provide a number of reality checks that reinforced the level of limits on our lives and the concomitant sense of isolation. 

Sunday morning a Volunteer came.  Edie always brings whatever is needed to leave behind a full meal, very tasty, with lots of variety.  During the Volunteer time I headed up to the Lake for a while and then to the marsh below the dam.   It was a helpful time.  Feeling out of sorts and searching for some sense of renewal, the combination of devotional reading and sensory refreshment was especially meaningful. 

The book (about spiritual formation) is speaking to my need, providing the sort of intellectual framework that fertilizes my roots and generates hope for growth.

What flooded my senses provided the grounding in the natural world that helps me reframe my situation.  As I stood at the edge of the lake, the gulls spread over the water were screaming.  I have no idea why, but they were screaming.  I guess that is just the way gulls vocalize.  Nearby, one gull flew over another that was sitting on the water.  The flying gull made what sounded like some belligerent remarks, and the one on the water started screaming at the one flying.  In other places on the lake, occasionally one gull would crash land into another and a skirmish would ensue.  I don’t think this is mating season.  I will have to ask a birder what was going on. 

There were Cormorants diving for food.  A raucous Great Blue Heron flew by joining the conversation as he flew.   I watched a butterfly go by and come very close to becoming a snack for a Barn Swallow that just grazed it.   

The highlight was what I had seen last week and thought to be a juvenile American Bald Eagle.  My birding expert, whom I call Bob, after I reported the sighting, suggested that due to a flying pattern I descibed it might have been an Osprey.  This week the bird came close enough to confirm that is was an Osprey.  It had the telltale black mask on its face.  In fact it dove into the water right in front of me to get a fish — an unsuccesful fishing trip.  As I continued to watch, another bird appeared in the distance.  It also flew toward me, and I was able to determine that it was a second Osprey. 

I spent some time walking by the marsh, providing a little exercise, much needed.  The lifting and moving and turning of Mary Ann provides some strength training, but my life is pretty much void of any cardiovascular conditioning.  A combination of creativity and discipline seems to be the path toward better physical and spiritual health.  I am better at the creativity than the discipline.  I am way better at talking and thinking than I am at doing. 

We are in another restless night.  It has been no more than fifteen minutes between needs for the last two or three hours.  It is hard to muster the energy for moving from thinking to doing when very tired and tethered to another person whose needs are constant. 

Yesterday there was what felt like the start of the flu during the evening after church and into the night.  Chills came for a time.  Instead of writing a post on this blog, I went to bed in hopes of getting whatever it was to let go.  Since I simply can’t be sick due to Mary Ann’s circumstances, I got better today.  We will see what comes. 

This is a very thoughtful time for me, with lots of feelings converging.  My hope is that there will be enough time for processing, and that a healthier pattern of living will emerge.  At the moment, I am shutting down.  It is time to get to bed!

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

 

July 20, 2009

Caregiver and Spouse’s Daughter Responds

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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.

 

May 20, 2009

Caregivers: Information Overload — Or Not

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , |
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There was a four night special on Alzheimer’s Dementia on HBO about a week ago.  A number of those who are in the online group for casegiving spouses of those with Lewy Body Dementia had no interest in watching the series.  Why?

We don’t subscribe to HBO (too tight to pay for premium channels), so it was not an option for us.  I don’t know whether or not I would have watched it if I could.

Especially when I was in the thick of ministry in a demanding parish, I had no interest in watching soap operas or reality television shows.  One reason was that I experienced on a surprisingly routine basis drama in people’s lives that matched or exceeded what was portrayed in the television stories.

One of the characteristics of the pastoral ministry is that due to its nature as a helping role and the concomitant vow of confidentiality, people often revealed what might be called their “dirty laundry.”  Sometimes they confessed their darkest side in search of forgiveness.  Often they revealed the worst of their family secrets. There are many revelations that I will take to my grave.

It was hardest to deal with revealed secrets that I was bound to keep even when interacting with other family members who were not privy to whatever it was.  I heard things that would not have made the latest soap opera because writers would have considered them too hard for the audience to believe.  You know those things we assume could never really happen, at least not to anyone we know?  They are happening in the lives of people all around you, people you could never have imagined could be involved in such behavior.

Having that window to the reality in which I was living, I neither needed nor wanted to immerse myself in some fiction attempting to provide me with a vicarious experience of the dramatic.  Real life provided enough drama.

The reason those online Caregivers were not interested in seeing a special on Alzheimer’s Dementia (AD), is that they are living the drama themselves.  For that group it is Lewy Body Dementia (LBD), which is different from AD in some respects.  The confusion and memory problems and hallucinations come and go, sometimes in minutes for those with LBD.  There may be a decline that is followed by a return to  former alertness.  There is a greater sensitivity to a number of medications, sometimes the very medications needed to control some of the symptoms of the disease.  Parkinson’s or Parkinsonism is often a part of the LBD experience.  There are very many characteristics that AD and LBD have in common.

Those who live with AD or LBD or PDD (Parkinson’s Disease Dementia – a Lewy Body Dementia that emerges after Parkinson’s has already been diagnosed), do not necessarily want to watch their struggle on television.  If anything, they want television to provide them some escape from Dementia World.

I have a thirst for information that might have led me to watch the Alzheimer’s Project on HBO, if we had HBO.  Information helps me objectify what we are going through.  Information takes away some of the apprehension because it demystifies the Disease.  It reduces its power to intimidate.  It becomes more of a matter of fact part of our lives, less able to blind side us with surprise attack of some sort. Of course anything can happen at any time, without warning, but at least we know what some of those “anythings” are.

It is fine to cut out articles and inform Caregivers of programs about the disease their Loved One is battling.  Just don’t be offended if they don’t read it or watch it.  They may be on information overload just dealing first hand with the disease.  They may, as do I, find the information a helpful tool for bringing the disease down to size.

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

 

April 29, 2009

Caregivers’ Unhealthy Eating Habits

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I just finished a piece of wonderfully decadent chocolate pie.  Life is good!

For a few months we are providing a place to stay for the Pastor who is now the Senior Pastor at the Congregation from which I retired nine months ago.  His children are finishing the school year before the family moves to town.  The Congregation is bringing a meal a couple of times a week so that he can have real food once in a while.  Cooking is not one of my gifts. What a treat it has been to greet people at the door, loaded down with containers of nourishing food, providing an entire meal including dessert!

What was the norm for meals before he arrived, and what will be the norm again when he and his family settle into the home they have found here, is not so lavish and nourishing.  On a good day, there may be a relatively nourishing full meal.  A good day does not usually come more than once or twice in a week.  I like vegetables, and I can steam broccoli and will do the same with the freshly picked asparagus I hope to find at a local country market in the next few days.

The reality is that our normal does not include daily home cooked meals, far from it.  There are some dynamics in our pattern of living that do not make healthful eating an easy thing to do.  I suppose that Caregivers who have had food preparation as an element of their portfolio prior to the addition of the chronic illness to the family, do a good job of providing regular.  Cooking was not part of my portfolio.

Among the dynamics of caregiving that works against eating regular, balanced and nourishing meals, is the impact the chronic disease has on the appetite of the one receiving the care.  In the case of Parkinson’s Disease and Lewy Body Dementia, one of the early signs is the loss of the sense of smell and taste.  I have in the past asked Mary Ann how she determines what she likes and dislikes since from long before she was diagnosed with Parkinson’s those senses had diminished.  I don’t know exactly how she answered, but my memory of what she said is that there are some flavors she can pick up, then there are textures and visual cues and just a general awareness of what she likes and dislikes.

One thing that many of the Lewy Body Dementia Spuoses online group say is that their Loved Ones like ice cream.  One said that a health professional told her that the taste buds that sense sweetness are the last to go.  Mary Ann could easily eat two large servings of ice cream a day if it was available.  I need to add quickly, that when I was growing up, at least during the summer months, I remember my parents and I heading to the Oatman Dairy for hot fudge sundaes (topped wtih salted pecans) pretty much every evening.  My taste for ice cream is legendary among those who know me.  Don’t start a conversation with me about ice cream unless you have a substantial amount of time to give to that conversation.

Here is one of the problems Caregivers have in their attempt at healthy eating and weight control.  It is the needs of the one for whom they are caring that take priority.  Especially when there is some level of dementia in the picture, food issues emerge.  Just finding foods that are acceptable is no simple matter. The house ends up filled with what the one affected by the disease will eat.

Sometimes there are diet restrictions placed on the one with the chronic or progressive disease.  He/she may have diabetes or heart disease added to the primary illness.  It would seem then that it would be easy to maintain good eating habits.  Not so!  When your Loved One is suffering from some sort of major debilitating disease that steals them much of what brings them joy, how can they be denied a few simple pleasures.  If Mary Ann likes ice cream, that is what she gets.  The ice cream may be a couple of scoops from Baskin – Robbins, or a Sheridan’s Concrete, or a Turtle Sundae at G’s Frozen Custard, or a Dairy Queen Blizzard, or a Pecan Caramel Fudge Sundae at the Braum’s Dairy an hour away.  She likes Glory Days’ Pizza.  She gets a couple of slices of all meat pizza once a week, providing her with two meals.  She likes burgers and fries and KFC and Long John Silver’s and Steak and Shake and a Steak Burger and Cheese from the Classic Bean. She loves sweet jello dishes with cool whip and sour cream or cottage cheese.  She likes bratwurst and sour kraut and beef and potatoes and pork roast and chops.  Lunch at home almost always includes handfuls of Fritos and a regular Pepsi.

Yes, she has heart issues and should not be eating red meat or anything with cholesterol.  Yes, she has had congestive heart failure suggesting a diet low in sodium.  But she also has Orthostatic Hypotension (low blood pressure episodes) that is controlled better when fluid is retained allowing blood pressure to remain at a higher level.  Salt provides that fluid retention.

After weeks or months or years of trying to negotiate the mine field of evil foods, after fighting endless battles on what should and shouldn’t be eaten, this Caregiver, and most with whom I interact have concluded that there is more to be lost than gained by continuing the battles.  What is the point of denying someone simple pleasures just to add some more years to avoid those simple pleasures.

One thing that militates against a Caregiver eating a healthy diet is that the house is filled with food that is not helpful to maintaining a good balanced diet.  Of course the presence of that evil food does not force the Caregiver to eat it!  Isn’t the obvious solution simply to have healthful foods in the house to eat as well as the evil foods?  It may be the obvious solution to the problem, but it doen’t work.

The real culprit that sabotages efforts at healthy eating is the stress that comes with the task of living on a roller coaster going at breakneck speed completely out of control.  Food is the drug of choice for Caregivers.  We may not be able to stop the roller coaster, but we can head for the kitchen and eat a bowl of ice cream followed by a handful (or two) of cheddar cheese flavored Sun Chips.  We can slather the back of a a couple frozen cookies spoonfulls of Nutella.  We can eat a heaping spoon of chunky peanut butter dipped in a dish of chocolate chips.  Caregivers’penchant for late nights provides plenty of time for more than one foray into the kitchen. If we can’t stop the roller coaster, at least we can treat ourselves while we ride.

This is where suggestions for solutions to the problem usually come in these posts.  If I had a solution to this one, I wouldn’t have 165 pounds hanging on a frame built for 145.  I guess I need to watch Oprah while I eat my afternoon snack.

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

 

April 18, 2009

Prolonged Grieving for Caregivers/Receivers

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Downstairs on a quilt rack is a queen-sized Sampler Quilt. A Sampler Quilt is a quilt made with many different patterns that serve as samples of traditional quilt blocks. That quilt was stitched entirely by hand — no machine quilting. The stitches are even and very, very tiny, the way quilt stitches are supposed to be. It took Mary Ann two years to transform pieces of fabric into a completed quilt. Parkinson’s has stolen from her the ability to handle a needle at all, let alone sew a quilt.

Those who have a progressive disease with no known cure are forced to watch their abilities, abilities that that helped define them as unique individuals, diminish until each one crosses a threshold that leaves them empty of that ability. Each loss is a little death. It is grieved just as if a piece of her/hiim has died. Each loss brings with it all the same stages that have been used to describe the grieving process that is experienced after losing a loved one.

Most of the times Mary Ann and I find ourselves in conflict it is because we disagree on the degree to which one of her abilities has diminished. She is convinced she hasn’t crossed the boundary that leaves that ability on the other side, out of reach. I am often more ready to find acceptance than she is when an ability is lost to her. While the conflicts are unsettling, seeing her fighting acceptance reassures me that she is still her feisty self. When I see her accept whatever loss it is, I feel a deep sadness that a little of her is lost.

Watching someone you love lose a bit of herself grieves the Caregiver. To put it in more dramatic terms, Caregivers watch their Loved Ones die a little at a time for however long the caregiving goes on. While that is a harsh way to speak of it, calling each loss a death helps put in motion the process that ultimately can lead to acceptance.

Please understand, there is no way to make this part of the life of a Caregiver and Carereceiver pleasant and fulfilling. What can happen is by accepting the loss, full attention can be given to the task of building a new reality that has new ways of finding meaning and fulfillment. That, of course, is far easier said than done.

As a Caregiver, I am tasked with finding new ways to live meaningfully, when old ones are no longer available. I cannot stop the progression of the disease, the process of decline, but I can look for places to stop along the way, places of significance and meaning, places that could not be discovered if still trapped in the grief.

As I was thinking about this today, it dawned on me that the chronically ill and their caregivers are not alone on this journey of loss and grief and the need for acceptance. Every one of us who has seen a gray hair or felt the sharp stab of some arthritis or seen wrinkles where the skin used to be smooth and taut, every one of us who has been defeated at our favorite sport by someone younger and more agile has some grieving to do.

Since we are all mortal and confronted by our mortality at every sign of aging, we all have the challenge of identifying what we have lost and moving through the grieving process to acceptance. Otherwise we will waste the time of life we are in trying to live in a time long gone. We will miss whatever opportunities lie embedded in the present, opportunities unavailable to us until now.

For those with Parkinson’s Disease or any other seriously debilitating disease, the pace of the loss is increased, the degree intensified. There is just more grieving to do and more acceptance to seek. The abilities in those with a progressive disease may diminish to the extent that it seems virtually impossible to find anything left for them to do.

In almost forty years of pastoring, I have been invited innumerable times into peoples’ lives at the death of someone they loved.  (Sometimes it was someone I loved too.)  Sometimes the death came at the end of a long life. Sometimes there was a protracted illness. Sometimes people stood watch as their loved ones died painfully.  Sometimes the death came so suddenly as to leave them breathless, having had no time to prepare or say goodbye.  No matter how it happens, a death must be grieved. It is not a matter of one being harder or easier to deal with, each must be grieved.

For those who are Caregivers for someone with a progressive disease for which there is no known cure, the grieving is spread over all the years of Caregiving.  There are times when the pace is measured by small steps and times when there are frightening leaps toward the inevitable end of the journey.  Grieving is an important process in the journey.  It gives us a chance to express a variety of emotions, to deny for a while whatever it is that has been lost, to spew out some anger, to spend time wondering what we could do to change it, to just feel bad about it for a while and finally to recognize it for what it is, another step we have taken as we travel along with each other and the disease.

When we move through grief in a healthy way, the accepance that comes frees us to be ready to see what possibilities lie in the present.  We are able to see them and judge their value by what is so in the present, not by a past that is no longer accessible.

It must be added that those of us who deal with Parkinson’s Disease, Parkinson’s Disease Dementia, Lewy Body Dementia and a number of diseases like them have the even more frustrating challenge of grieving the loss of one level of functionality, only to see it return for a time, then disappear, return again, all without any identifible pattern.  It is sort of like the weather in Kansas and Oklahoma.  If you don’t like it, just wait a bit, and it will change. One loss may be grieved many times.  There is joy when what has been lost returns and sadness when it leaves again.  We have the challenge of grieving the loss of consistency and the ability to make and realize plans based on the abilities that exist at the moment.  We have to develop the ability to turn on a dime and change directions based on what is so in each moment as it comes.  Our need is to come to acceptance that we are not on a train moving at a measured pace in a certain direction.  Our need is to accept that we are on a roller coaster with all the twists and turns, ups and downs, with no way of knowing when or where we will be next.  We know the destination for certain.  We just have no idea when that destination come and the roller coaster will stop.

In the meantime, the journey with Parkinson’s or any debilitating disease accompanying us demands that we learn to grieve effectively.  The grieving helps us find our way to acceptance so that we can live in the present, so that we can see and take advantage of whatever opportunities lie in the present as it really is.  The ability to grieve losses effectively frees us to live with meaning and purpose the life we have each day as it comes.  The day we are in is the only one we have for sure.  Grieving well frees us to live it to the full.

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

 

April 17, 2009

Caregiver Guilt: Guilty or Not Guilty?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , |
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Yes!!!

In yesterday’s post, I said this one was coming.  I have been thinking about it for a long time.  Those of us who have full responsiblity for another human being suffer from feelings of guilt.  We just do — and yes, sometimes we actually are guilty and sometimes we are not guilty. 

There is nothing in particular that triggered my thinking about this today.  It was a long and somewhat frustrating day.  The morning routine went fine, the one through which I declare that there is some shred of control left in our lives in spite of Parkinson’s Disease joining the family twenty-two years ago.  Then some repair work that was to be done at our house was sabotaged by the carelessness of the vendor’s service manager.   The resolution of that problem is not yet in sight. 

After that start to the day, my list, the list by which I seek to create some order out of our chaos simply didn’t accomplish its task.   It did not order my day.  I didn’t do it, much of any of it.  I looked at it often.  I did some self-talk trying to encourage doing enough to check off an item or two.  It just didn’t work — I just didn’t work.

One thing that did take control of the day was the activity of the alimentary canal of the one for whom I care, about whom I care.  She was up and down, in need of an elbow to steady her, or a task to be done throughout the day.  There were anywhere from moments to minutes between the needs — no more than minutes. 

With that said, I could have, should have accomplished more. 

The guilt that is part of a Caregiver’s world is a constant presence.  It does not really have to do with how good the care is, how well the Caregiver does at responding to the needs of the one for whom they are caring.  In fact, the better the care that is given, the greater the opportunity to feel guilty. 

Caregivers feel guilty for not doing enough, not doing all that they should do as well as they should do it.  The harder they try to be the perfect, nurturing, loving, kind, thoughtful, capable Caregiver, the farther behind that goal they fall.  

The problem is obvious.  There is more that should be done than can be done by any one human being!  There are no boundaries around all that should be done to help your Loved One have all that she/he needs to have the life she/he deserves.  It is impossible.  The Disease has joined the family.  Caregivers can’t fix that.  Mary Ann has Parkinson’s.  I can’t change that.  I cannot give her back the life she deserves.

Why do Caregivers then feel guilty?  Mary Ann has been to Physical Therapy, Occupational Therapy and Speech Therapy.  We have pages of exercises she should be doing.  There are games that should be played to keep her mind stimulated.  I should get her out more, find entertaining activities to keep her from being bored.  I should learn how to cook three good meals a day that are tasty and pleasing to her palate. 

Why do Caregiver’s feel guilty?  We aren’t always nice!  I get irritated!  I get irritated when she falls after making the same frustrating choice that has resulted in a fall hundreds of times  before (literally, in twenty-two years).  She doesn’t want to fall.  She has Parkinson’s Disease and Orthostatic Hypotension and the side effects of medicines, but she still wants and needs to get up and move.  I get angry at her when the Parkinson’s deserves the anger. 

Why do Caregivers feel guilty?  Yes I love her and am completely committed to her care, but I don’t like having my biggest needs trumped by her tiniest needs.  I am well.   She is sick.  I shouldn’t resent her for something she can’t control.   The truth be known, she is no more perfect than I am.  Because she has Parkinson’s does not make the things that used to be irritating any less irritating now.  I am hardly sweet and wonderful.  I am also just as irritating and frustrating to live with as ever.

It seems to me that one challenge for Caregivers is to separate the things of which we are guilty from the things of which we are not guilty. 

We are not guilty!  We cannot do all the things we should do.  That means we will not be doing a whole list of things we should be doing.  Every helpful suggestion for what we should be doing just moves the already impossible goal farther away.  Caregivers need to come to terms with a simple reality.  We are just people.  We have a life too.  It is actually healthy for us to set limits on how much we do so that we can continue to give good care. This is a marathon, not a sprint.   We cannot make up for all that the chronic illness has taken away from our Loved One.  We will soon become completely disabled if we try.  Feeling guilty about what we cannot actually accomplish is a waste of precious energy and a weight on our spirit that can’t be carried for long without breaking that spirit. 

We are guilty.  We actually do say things we should not have said.  We do blame our Loved Ones for things over which they have little or no control.  We really are imperfect.  We do fail to do things that we could have done to make a real difference.  We take out on our Loved Ones our frustrations with the Disease by our tone of voice or our unresponsiveness or whatever subtle tools we use to punish them.  It does us no good to do all sorts of mental gymnastics to try to justify our behavior.  It is a waste of time.  We are guilty! 

What can we do with the guilt we deserve?  We can’t undo what we have done that we should not have done, or not done that we should have done.  For some of us there lies within our spirituality the freedom to admit our guilt, face it boldly. without fear, and refuse to be disabled by it.  The kernal of truth that lies in the very center of the spiritual tradition that nourishes me is that the One who chooses that I exist, loves me unconditionally with love more powerful than all the things for which I rightly feel guilty.  That love is not weak and shallow and without consequences.  It is easy to feel guilty.  We can wallow in it, get depressed on account of it, and give up trying.  Unconditional love, mercy, forgiveness is much harder.  It implies the possibility of change.   It offers the freedom to change.  It removes the excuses we use to avoid growing. 

For those who do not have a particular spirituality or do not understand there to be a spiritual dimension to life, the issue is the same.  Feeling guilty is still a waste of time.  Naming the things we have done that are actually wrong, harmful, destructive is a healthy first step.  Our primitive brain elicits words and behaviors that frustrate our humanity.  We need to face that before we can choose behavior that nurtures our humanity.  The task is to identify and accept the truth about ourselves and choose behavior that allows us to grow and change and become more than we have been. 

However we define the nature of our humanity, whether in spiritual terms or otherwise, we can find meaning in our caregiving, nurture our humanity, grow in our ability to live full and complete lives even in the company of a chronic illness that seems to be hell-bent on destroying us and our Loved Ones. 

Caregivers, are we guilty or not guilty?  Yes!!!  With that clear, let’s get on with it.  We have things to do!

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

 

April 11, 2009

Caregiver Decisions: Right or Wrong?

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Should I or shouldn’t I?  Decisions come at such a pace that often it is just impossible to give each one its due.  Sometimes little decisions accumulate, and before you have time to really think about it, the decision is made.  Which decision is the right one?  How can I be sure it’s right?

About a year and a half ago, I made a decision, a big one.  I decided it was time to end a very satisfying and stimulating and meaningful career of some forty years to do full time care for Mary Ann, twenty-two years into Parkinson’s Disease.  Was it the right decision?

While the decision was made and announced a year and a half ago, the actual event took place about ten months ago.  I haven’t yet had a full year’s cycle since the day that career came to a screeching halt.   If I had been burned out it would have been an easy call.  If I was tired of the people and the demands, retirement would have been the obvious choice.  If I felt the people I was serving were anxious for me leave the job (I have no doubt some were), it would hardly have been a decision at all.  There was warmth and affirmation voiced by enough to make me feel that I was appreciated.

The truth is, it was actually a decision!  Most choices we make, while we may call them decisions, are actually simply the logical next step along a path that is actually very clear.

The word decision has as part of its root the word translated “cut.”   An actual decision is a choice that demands cutting away something of value for the sake of something else of value.  Which is which is not always clear.  In fact, my use of the word “decision” demands that the choice is not clear — at least at first glance.

I made the actual decision to retire in approximately thirteen seconds, while sitting across from Mary Ann at McFarland’s Restaurant.  Does that sound cavalier, irresponsible?  I saw Mary Ann struggling to get food out of the dish to her mouth, finally giving up in frustration.  It is as if a switch in my mind flipped.  It was a switch of recognition that the time had come.  The time had come to give her my full attention instead of having to struggle for bits and pieces as I focused on my career away from her.

Understand, while the decision was made in thirteen seconds, the process leading up to it had gone on for years.  There were many pieces that were coming together to create the environment from which that decision emerged.  While I would be retiring a year early relative to Social Security, I was vested in my pension and would have a far smaller income stream but not much different from what would be available if I waited another year.  The shock of the lower income would be significant whatever the year I chose.  Another piece was that the number of Volunteers to stay with Mary Ann was diminishing at a fairly brisk pace.  My Daughter and Son-in-Law  needed to return to Kentucky, since the two year commitment they had made was up.  The employer in Kentucky was ready for the return of a valued employee closer to the home office.  Our Daughter had been our mainstay during those two years.

One of the significant pieces of the landscape in which the decision was made was the difficulty I was having doing my work justice with the roller coaster of demands that come with caregiving.  What insulated me from that dimension was a remarkable professional and support staff that, to put it bluntly, covered my tail!  There was a high quality of service provided the community in spite of my limitations.

I can remember saying many times that I would not be a good full time caregiver.  I had decided to work well past retirement age, using whatever resources were available to care for Mary Ann while I worked on.  Even when I began thinking about moving toward retirement, I did so with a deep terror that it would be a disaster for both Mary Ann and me.

In that thirteen seconds, it became crystal clear that I needed to have time with Mary Ann while she needed me most.  Actually, Mary Ann was not really so excited about the prospect of my being at home all the time.  She has a set of feelings of her own about my presence with her — but I am the one writing this post, so you will get it from my perspective.

While I would like to be seen as noble and compassionate and a dedicated husband, I did it more for me than for her.  I have a pretty realistic understanding of humanity.  Most of us do what benefits us.  I needed to stop working and come home to Mary Ann.  I needed it for selfish reasons.  First of all, I do love her in that deep way that includes romantic love and the kind that takes decades to build.  You can only understand it when you  have experienced it.  I made a choice that I could live with.  I care who I am and who I become.  Making that choice brought with it pain beyond description and a deep feeling of worth and value that cannot be stolen from me.

When a decision must be made, each option has good stuff and bad stuff in it.  If it were all one or the other it would not be a decision.  To make a real decison means losing the good stuff in the option to which you say no and gaining the bad stuff in the option to which you say yes.

This week I am feeling the pain of what I have lost.  At the same time, I celebrate what I have gained.  I have gained time with Mary Ann, including moments of frustration for both of us and moments of joy.  Yes, I am watching her slowly decline, but I am here to see it and have some small impact on how it goes.

In a sense, I have moved from a life that included external validation from a salary, from working in a public forum, from others whose lives I entered at some of their most important times, to a life focused on internal validation and the chance to be there for another human being (whether she likes it or not) in a meaningful way, one that makes a difference daily.

Did I make the right decision?  I have no doubts!  In fact, that thirteen seconds was so decisive as to have freed me not to waste a minute on regrets or second thoughts.  I am free to live each day to the full, whatever frustrations or joys it brings.  I get to do it with someone I love.

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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