January 27, 2010

Hallucinations Leave the House

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I thought I would check to see if Mary Ann had any hallucinations at Bible Study this morning, away from home.  She told me that there was a twenty-one  year old walking around the room during Bible Study, behind the ladies sitting across the table from her.  I am fairly sure it is very unlikely that there was anyone walking aroud the room they were in, but I will check with someone in the crew to be sure.

I just checked and found out that she did ask quietly of Mary (schedules Volunteers and was sitting next to her),  “Who is that girl over there?”  There was no girl.  Gratefully, Mary knows our situation well.  Mary added that Mary Ann stuck her tongue out at her when she asked if Mary Ann had taken her medicine.  That is the Mary Ann I know!

I just read another post by one of the folks in the online group of Caregiving LBD Spouses.  She mentioned the problem with her Loved One blaming all sorts of things on the imagined people.  It is a paranoid delusion in his case.  Many of those in the group describe their Loved Ones saying often that “they” are doing this or that.  I suppose it is likely that this problem will grow at our house as time goes by.

Mary Ann napped for a couple of hours after lunch.  The hallucinations have continued.  They tended to be seeing something that was there, but seeing it to be something it wasn’t. 

Barb came and spent the evening with Mary Ann.  Again, I ran an errand or two and then came back to the house to spend time in my office listening to music and reading a new book that I hope will have a positive impact on my physical well-being.  That is a concern for any Caregiver who needs to stay healthy to be able to continue to fulfill the responsibilities.  There simply is no room for health problems.  (As if any of us could control what does or does not happen in that regard.)

I am heading to bed early in hopes that tonight will be a better night. 

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

 

January 26, 2010

It Was Only Water

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It was only a cup of water, but it was 3:48am, and it ended up all over Mary Ann, and the bed and the floor between our beds.  The bed spread, bottom sheet and mattress pad were soaked in places. Everything needed a clean and dry replacement.

Those who are in the Caregiving Spouses of those with some form of Lewy Body Disease Yahoo Group would recognize this to be tiny on the scale of messes they have to deal with routinely.  It is just that it was one of those nights with rampant hallucinations, lots of times in need of my help throughout the night.  I had asked again and again for her just to stay in bed, since otherwise there would be no hope of sleep.  She decided to get up and get the water for herself from the bed stand.

I won’t deny feeling pretty annoyed, but I got things changed and put her back in bed.  There were additional needs increasing as we got closer to morning.  She was up early, in need of food and pills.  Needless to say, it is midday; she is napping; and I am, as usual, wide awake and sitting here at the computer (after having fed the birds, of course).

Before the troublesome night, I had thought today might be the day we could take in a movie.  It is almost 3pm and Mary Ann is still sleeping.  I asked her about the possibility of getting up when I gave her the last round of pills.  I hung around for a while talking with her about getting up, but she wasn’t ready to do so.  I am grateful to have most of last evening’s PT’s coffee refill left this morning, so I am avoiding the ugly caffeine withdrawal headache.

She finally got up around 4pm, ate lunch and began watching some television.  The hallucinations continue.  I had hoped that she would sleep them off with the long nap.  Just moments ago she fell in the bedroom but did not hurt herself.  As I was getting her up, I could see in her eyes that she was seeing someone.  She whispered that there is a man in the living room.  She insisted that I hide the coin jar on her dresser.  When I got her back into bed, she asked me to tell him to go to bed.  This morning, at one point she told me that there was someone in his bed, correcting herself quickly that is was my bde the person was in.  I wondered if it was another fleeting moment of the Capgras Delusion, thinking that I was a substitute.  By the way, that delusion was the basis for the Body Snatcher movies.

I just saw on the monitor that she was getting up.  I rushed in and she said she had something to tell Pete.  I told her that I am Pete.  I asked her if sometimes she thought I was an imposter.  She didn’t answer that clearly.  Then she talked about the people again.  She said, “Now they are eating here.”  She told me that the children were standing at the rail around the opening to the stairs to the basement.  That spot was about ten or twelve feet from the bed where we were standing.  She said the dad was in the kitchen making food.  I asked if there was a Mom, a wife.  She said that of course there was.  She did not say whether or not at that moment she could see her.  It is no wonder she has a hard time sleeping with all those people around.

Volunteer Patrice came over for a couple of hours this evening giving me a chance to run a couple of errands and begin a much needed clean up of my office.

It seems likely that we are in for another night with lots of interruptions.  I am now thinking about going over to the Hospice House Administrative office to check on the option of Mary Ann staying a night there.  They have an Adult daycare program in one building and offer rooms in the Hospice House for occasional night time care (having nothing to do with the Hospice program itself) at a reasonable (I think) cost.  If there are too many sleepless nights in a row, I will need to have an option for getting some sleep.  I will take Mary Ann along so that she can see what the rooms are like.  It is a beautiful place in a lovely setting.  As pleasant as the setting is, it may not be a workable option.  If she is not comfortable with the situation, I will not be able to sleep at home knowing she is distressed.  That would then defeat the purpose.

For now I am just hoping for a decent night’s sleep some time soon.

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.

 

January 25, 2010

Acrobatic Eagles Entertain

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I am not sure how many there were sitting on the ice at the lake, but certainly fifteen or more.  It is a huge lake, so I could barely see some of them.  There were adults and juveniles in many stages of development.  They sat on the lake waiting for frozen fish to work their way close enough to the surface of the ice that they could get to them.

Many of them flew from one place to another.  At one point a beautiful black and white adult American Eagle flew right overhead, low enough so that I could practically count the feathers without using the binoculars.  Later a juvenile did the same thing.  The mottled brown and cream were bright and beautiful in the sunshine.

The Eagles interacted with one another.  They would land near each other.  At one point there were a cluster of four, two adults and two juveniles hopping toward each other, then flying a few feet away.  A while later there were two standing on the ice so close to one another that they were touching.  One was a juvenile and one an adult.  It looked like a parent and child (same size as parent) leaning on one another, both looking straight ahead in the same direction.  I suppose it could have been a May-December thing.  I don’t know enough about eagles’ behavior to be able to make an intelligent guess.

The most spectacular sight was of two eagles flying into each other, almost grasping talons in mid-air.  At one point one of them did a complete sideways somersault, a roll. “Contrary to traditional belief, eagles don’t copulate in the air but rather on a branch near their nest or on the ground.”  That is a quotation from a website named Birdhouses101.

It took a while for me to settle after the excitement of what I was seeing.  Once settled, I spent some time reading an article from Weavings, the Spirituality Journal that I read.  It was the second reading of the same article.  Many of the articles in the journal are a little like fruit juice concentrate.  They need some time thinking, some contemplation, to get the best and most satisfying flavor from them.

The third week in the online Ignatian Retreat I have been doing has provided Scripture passages and articles on a theme that has been reinforced by the online Prayers and exercises provided by Fr. Ed Hayes (through the National Catholic Reporter website).  The theme is appreciating God’s imprint on and activity in all dimensions of life, especially the natural environment, a little like the movie Avatar, but without crossing into Pantheism.  I haven’t yet seen the movie, but would like to see it on the big screen rather than waiting for the DVD to come out.

The time at the lake provided the perfect setting for contemplation of God’s presence.  It is a theme that provides respite and strength for the day to day demands.

Mary Ann had a reasonably good day.  Elaine spent time this morning with her while I headed to the lake.  Elaine always reads more pages in the book they have been working on for months.  When Elaine reads, she immerses herself completely in the story and the characters come to life.

Lunch was a grilled sandwich, none too exciting, but then the football playoffs were on television today. Mary Ann enjoys watching professional football.  When we went to our first Chief’s game in Kansas City, she wondered what the ten yard business was about.  Not too many years later she reached the point that she knew the names of most of the quarterbacks on the various teams.  She would yell out loud when the games were on.  She has become much more subdued, but sitll enjoys watching the games.

There have been some mild hallucinations today.  She only had a short nap on the couch today.  I prefer that she nap in her bed, since it is outfitted to deal with disposables leaking.  I put a chux on the couch for her to lie on just in case.

She is in bed now, but I don’t know how the night will go — whether or not it will be filled with raccoons and people and any other unwanted guests remains to be seen. Actually, I went in to see what her movements were about.  There were children again.  Then she looked over my shoulder as I was helping her to the commode and said, “What am I going to do with all those sponges?”  That is a new one.  I checked again and she was checking the children who she said had found their spots.  She asked for some tapioca.  As i was feeding the last of it to her, she jumped because the raccoon was nibbling her foot.  Then the bedding was moving.  I saw no movement.  I am anxious for the new order of Seroquel to come so that I can titrate from 100mg to 150mg per day.  Then we will see if there is any reduction in the hallucinations.

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.

 

January 24, 2010

Couch Potato Day

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“Let’s do something special today,” Mary Ann said when we were out doing her breakfast and pills.  I asked what she had in mind.  She had no more words available or, I suppose, specific thoughts behind them. 

I agreed that we ought to do something to get out.  Let me jump ahead.  She is now in bed for the night (I hope), and we have gone nowhere and done nothing. 

Why?  Why is it fourteen hours after saying that, and we have not set foot out of the house?  Let me correct that.  I did set foot outside a few times.  When she decided to nap this afternoon, I went out and stood in front of the house as patches of sunlight came through.  In fact, I got a folding chair out and did some reading in a Spirituality Quarterly called Weavings. 

While she was napping, Don and Edie stopped by for a while with some freshly baked blueberry muffins in hand.  We spent a while talking inside then headed out to the deck for a while, watching a few confused geese head by.  In the course of that conversation, I think we have come up with a possible name for the waterfall and surrounding wetland/raingarden.  Don referred to it as a “bog” at one point — a name that did not strike my fancy.  Then he mentioned a couple of names that included the word “peat.”  It is not a peat bog, but it is Pete’s Bog.  To say that Don and Edie have quirky style of humor would be to understate the truth of the matter dramatically. 

One of the things that allowed the day to drift away is the cluster of tasks associated with getting us both up and going, bathroom needs met, Exelon patch put on, hair washed and dried, Miralax mixed in juice of her choice, yogurt and cereal of choice provided, pills taken, other pills put in the timers, clothes put on, my shower taken, morning household chores done.  Understand, there is no time at which we can both be doing working, one doing one thing and the other doing something else.  All the tasks are done in succession rather than concurrently.  Eating and pill taking are long, drawn out activities.  During pill taking and eating I do have a chance to do a couple of things in the bedroom, clean the commode, make one of the beds, move the lift from the front door entry to the bedroom.  The time I have to do other things depends on how Mary Ann’s spatial problems are impacting her eating and how much help she needs.  Straightening up the kitchen and cleaning off the counters, putting things in the dishwasher and others in recycling is part of my need for having some semblance of order in the household.  My office is a shambles, as is the garage and the storage area downstairs.  I just need some areas clear to provide some sense of control in our chaotic world. 

Reruns of the Closer and Law and Order, tended to draw us into them just enough that if one was nearing the end, I sat down and see if it would come out the same way it did the last eight times we saw that episode.  I concede there is not a shred of rationality in that behavior.  

We were up shortly after 8am, but Mary Ann was hungry by the time we were both ready, and all the chores were done.  I suspect it would appear to someone seeing the morning activities at our house  as if it was all happening in slow motion.  I have usually eaten my bowl of cereal toward the end of all the morning chores, so when she is ready to eat lunch, I am still full from breakfast. 

After getting her some lunch, a movie was on television.  Since it had been going on for a while, it was distracting us from doing anything else.  I went back and forth to the computer attending to emails (eats much time), while watching enough of the movie to be engaged in its strange plot.  It turned out to be a depressing movie — just what we needed as a break from Law and Order episodes. 

In the morning, when Mary Ann first mentioned that we ought to do something special today, I mentioned the idea of heading to Kansas City to visit a close friend in rehab for a broken kneecap.  Marlene has ALS and needs a fully equiped unit to keep mobility as it heals.  Surgery is not an option.  Then I mentioned that we could drop off a couple of items at our kids’ home in the KC area.  After the movie, I mentioned that option again.

It was then that she said she wanted to lie down for a while.  That was around 2pm or 2:30pm.  I tried once, around 3:30pm to get her up, but she wanted to sleep.  It was not until 5:15pm that she was ready to get up.  At that point I did get out of the house for a short time to get a burger and fries from Wendy’s for her.  She wore the Lifeline and promised to stay seated while I went.  By that time she did not want to get out in the car. 

The roller coaster between lucid moments and hallucinations continued today.  At one point I couldn’t remember the name of Kyra Sedgewick’s (Star of Closer) husband.  She remembered his first name, Kevin (Bacon).   On the other hand, when eating the Junior Bacon Cheeseburger from Wendy’s, she stopped eating after in a matter of fact voice she concluded that there were shrimp, three of them, in the burger.  She held up pieces of the bun when I questioned her claim, and she said, “See?”

After the late nap, she stayed up a little later than usual, but is now in bed.  I don’t suppose the chances are very good that she will sleep well tonight, but we will see.

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

 

January 23, 2010

The Hard Questions

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“How long do you intend to keep caring for Mary Ann at home?” he asked.  “Until I can’t handle it any more.” I answered.  Then the hardest of all, “How will you know when that time has come?”

Since we live in a world of denial that provides us the emotional and psychic room to live each day without constant dread, those questions are not often asked and answered.  First of all, I don’t know the answer.  I have intentions about how I intend for this story to end, but I have no answers to questions about how the future will actually play out.

Two days ago I was asked those questions with which I began this post.  Today I experienced to some degree elements of the answer I gave.  As I have said in earlier posts, my intention is for the two of us to stay together here at the house at least until one of us dies.  My intention is to use as many resources as I can locate and afford to help make that possible.  That intention is not just an intellectual decision about how I intend to proceed.  That intention lives in insides.

With that said, I had to answer the question rationally.  I intend for Mary Ann and me to be together here at the house until I can’t handle it any more.  The question that has to be addressed, the hard question is, how will I know when I can’t handle it any more.  I stumbled around some as I tried to answer that hard question.  The two things that came to mind are hallucinations that get out of hand and grow into a steady stream, and the inability to get any sleep.  The two are related.

Today was an example of those two problems converging.  Last night Mary Ann was up multiple times, as many as a half dozen in an hour.  Almost every one of those times, there were people, or raccoons or other visual images not actually present outside of her mind.  The lack of sleep during the night meant that the hallucinations came in a constant stream this morning when she got up.  She asked if we were the only ones in the house, implying that she thought we were not the only ones.

By the way, yesterday, as she was eating the last piece of strawberry-rhubarb pie with ice cream (pie she had eaten with great enthusiasm for the two days before), she decided that the filling in this last piece of pie had somehow changed into tomato sauce. She ate the ice cream, but left most of the huge piece of pie. I am afraid of the day when I can’t get her to eat enough food because of what her mind is seeing.

Today, she grabbed the bedspread as I was folding it at the foot of the bed preparing for her nap.  She said there was a sheet of stamps or stickers stuck to it.  The bedspread was right in front of our eyes, she had her hand on it, convinced that she was pulling off what was stuck on it.  She told me to turn on the bright lights on the ceiling fan over the bed so that I could see the sheet of stamps.  When the light went on, she reluctantly admitted that they were not there. On the way to the bedroom tonight, she stopped and told me to get rid of “that” and then stepped over something that was not there on the floor in front of her.

This morning, when the hallucinations were at their steadiest, Mary Ann simply could not sit down for more than a minute or some fraction thereof.  She would jump up to go to one spot or another to get a good look at or pick up whatever it was she saw.  I had to jump up every minute or fraction thereof to grab hold of her gait belt so that she did not fall.  Once she was so dyskinetic when she jumped up that it was all I could do to untangle her feet and help her sit back down before she fell into a couple of tables next to her.  The activity was so steady that I could do nothing but follow her from one hallucination to another, or one task she had in her mind to do, pretty much always losing track of whatever it was by the time we got wherever she was leading me.

If hallucinations came at that pace constantly, I would soon be completely unable to cope.  The lack of sleep impacts both of us.  The less she sleeps at night, the more she hallucinates, the stronger and more vivid and more frequent they become.  The less she sleeps, the less I sleep.  The less I sleep, the less able I am to cope with the hallucinations.  They compound one another, lack of sleep and hallucinations, and my capacity to cope.

Here is how my inability to cope expressed itself this morning.  I told Mary Ann that I had been asked about how long I could keep her at home.  I told her that my answer included two things that could make it impossible, lack of sleep and streaming hallucinations like the ones that we were dealing with this morning.  It was cruel to say that to her.  I have no excuse.  My frustrating inability to cope with the constant following her to one thing and then another, after having a very poor excuse for a night’s sleep was the context, but I chose to say those harsh words. She has Parkinson’s Disease Dementia!  She didn’t choose the disease!  She didn’t choose the hallucinations!  She didn’t choose the frustrating behavior!

I guess there was a part of me that hoped the words would get through to the healthy part of her mind that has some ability to control her actions.  What she said next, broke my heart.  “Then what would happen to me?”  Usually, whatever I say just bounces off with no reaction.  This time it broke through.

I need say just how hard it was to actually write for all to see those last paragraphs revealing what I said to her.  I am ashamed and embarrassed.  I can only hope that someone reading this post has been there and said things of which you are not proud also.  I have chosen to face my own flaws head on without pretense, since it is just too hard to pretend to be someone I am not. My hope is that facing the flaws head on, will allow me to grow into someone better able to cope, a better Caregiver.

In answer to Mary Ann’s question about what would happen to her, I immediately told her of my intention for us to stay here together until one of us dies.  I told her I would use paid help here at the house to help do the care when I could not handle it by myself.  I told her that if I die first the kids would take care of her, keeping her close to them.

All I wanted to do was to get her to stop hopping up, responding to the various things she saw. She did stop hopping up, and I was able to get my shower done, make the beds, write an email or two and finish getting her ready for the Public Health Nurse’s visit.  I don’t know if what I said had any impact in that change in behavior, but even if it did, I feel no less guilty about being so harsh.

It is at times like this that I am very grateful to have a God who has openly addressed our flaws and stolen from them the power to ward off the Lord’s love of us.  That is why the song is called “Amazing Grace.”  The power of that gracious love is transformational.  It frees us to face our failures.  At the same time it challenges us to grow and change, cradled in the arms of that 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.

 

January 22, 2010

Local Resources and Support Systems Help

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“What day of the week is it?  What month is it?  What year is it?  Remember these three words, pen, car and watch.  Do you ever feel hopeless?  If so, is it all of the time, most of the time, some of the time, a little of the time?”  Tim asked those and very many other questions.  He asked Mary Ann if I was being nice to her.  I made a point of leaving the room for some of the questions, so that my presence would not skew her answers.  He got a current list of medications.  He checked for any changes in the information from last year.  Tim is a Case Manager from our local Area Agency on Aging. By the way, Mary Ann did not do quite as well as usual.  She aced the day of the week and the month, but could not come up with the year.  In the past she has usually remembered at least two of the three words.  He always asked three or four times during the interview what the three words were.  This year she was not able to manage remembering the words at all.  On the positive side, the number of falls has been reduced dramatically.

If I understand correctly, there is such a place accessible to most everyone.  Our Area Agency covers three counties.  Tim comes a couple of times a year.  Once is the major information gathering time.  The book the Agency puts put out each year has hundreds of resources listed on its many pages.

It is through Tim and JAAA that we connected with the local County Health Department.  In fact, coincidentally, Public Health Nurse Linda from the County Health Agency will be coming tomorrow for her assessment.  She comes every couple of months.  It is through her that we have had Bathe Aide Zandra for the last few years every Monday and Wednesday mornings.  We pay for that service (around twenty dollars a visit).  Those who do not meet certain income guidelines have reduced fees for the service.

Nurse Linda brought us our flu shots this fall.  She visits to see if the Bath Aide situation is working well.  She checks to see if we have any other needs, although there are many limits on what she has time or money to do for any given situation.  She and Tim are always interested in Mary Ann’s falls, any physical problems that might have to do with her safety and the quality of her care.

Even though we are pretty well self-sufficient, it feels good to know that there are folks out there paying attention to our needs, whom we can call if major problems emerge.  We can get help finding and evaluating resources.

By virtue of being active in a church, we have additional resources available to us.  Our congregation has a Parish Nurse.  Margaret is available a couple of hours a week at church to check blood pressures.  She comes to visit regularly to bring flowers and food and help out in any way she can.

In our case, the cadre of Volunteers from church is a major support.  As I often mention in these posts, they come and spend time with Mary Ann, enriching her days, giving her social contact and a break from my constant hovering. The visits also give me a chance to run errands, or meet with friends over lunch/coffee or head out for a breath of fresh air, or have some time for reading and meditation. Sometimes, as happened earlier this week, they bring food.

One of the major support systems for me is the online group of Caregiver Spouses of those with some form of Lewy Body Dementia [LBD].  That group has so much in common that we can be completely open in sharing our frustrations and fears in language that would scare those who have not been through what we are going through.  We can share ideas that actually have been tested in the lab of daily living with LBD or PDD [Parkinson’s Disease Dementia].  It is surprising how much it helps just to discover that what your Loved One is experiencing matches what many others are experiencing.  We are able to talk in a matter of fact way about things that would be terrifying otherwise.

In the course of writing these posts I have often mentioned Mary Ann’s Tuesday morning group.  That is part of her support system.  The Spiritual Formation Group that meets at our house on Wednesday mornings is a part of my support system.  Those groups, corporate worship experiences and personal devotional experiences combine to nurture our Spiritual health.  Sustaining friendships to the degree possible also helps us maintain a level of equilibrium in our out of control corner of the world. The local Parkinson’s Support Group provides the chance to have some face to face time with others dealing with the same challenges.

Whether or not you are aware of it, those of you who read this blog are important to my ability to continue in the role of Caregiver without losing my bearings.  During each day, I think about what is going on in our lives with an eye toward what I will say in the post I will be writing next.  As I write about it, what has gone on in that day or two begins to come into focus, allowing me to gain some sort of perspective on it.  That perspective steals from it the power to disable and destroy.  The struggles are difficult enough to deal with, without my giving them more power than they already have.

While just writing about the day and processing the events is helpful by itself, it is the awareness that there are people reading those words that brings with it some external validation.  I have only numbers on a metrics page and a few comments to verify that there are people out there listening, but it makes a difference knowing that you are there.

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.

 

January 19, 2010

Hooray for Volunteers and Food Deliveries

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“Would it be okay to bring supper over for you and Mary Ann?”  I was sitting by the phone and answered quickly.  Maybe it was a premonition.  Not really.  That is not part of my understanding of reality.  It was however a very pleasing phone conversation.

Then at about 5pm, the phone rang again: “Just a heads up, we are on our way.”  Shari and Martin are among the most thoughtful and generous people I know.  I would be hard pressed to name all the people between them they have helped out in one way or another.  They help with their time and attention.  They accommodate their busy schedules, they are both professionals working full time, to the schedules of those they help whenever possible.  I have no idea how they do it, but we are greatful at our house that they do it.

It was not just any food.  Shari checked one of the last church cookbooks to find recipes Mary Ann had provided when the book was produced.  That way she was sure Mary Ann and I would like what she and Martin brought.  Mary Ann loved it and ate more voraciously than has been her recent norm.  Catalina Chicken (Mary Ann’s recipe), baked potatoes, corn, a freshly baked loaf of bread, a hot rhubarb pie (Mary Ann’s recipe), and vanilla ice cream to have with the pie.  All of it was piping hot (except for the ice cream) and ready to eat.

That makes twice in three days, since Edie and Daughter Gretchen brought over part of the midday meal they had prepared on Saturday, a very tasty Taco Salad with wonderful and creative toppings.  They stopped by to show Mary Ann some quilts that Edie’s Sister had made.  It was a treat for Mary Ann to look at the fabrics used and the patterns and the stitching and the colors.  Norma likes best piecing the quilt tops.  Mary Ann also enjoyed that the most in the process of making quilts.  I remembered enough of the jargon from those years to recall out loud some of her experiences.  There was the first quilt, a Sampler Quilt, hand quilted over the span of two years.  There were the six baby quilts Mary Ann brought out and put in front of Becky when she was pregnant with our first Grandchild, Chloe (who, by the way, is also Son Micah and Becky’s Daughter — you Grandparents catch my drift).  Mary Ann clearly moved back to those days as she examined and handled the quilts, even if there were few words.  The quilts were strikingly beautiful.  The quilts, lunch and a pot of flowers, Gretchen had put together provided us with a very bright day in spite of the lingering fog outside.

Tamara came over tonight to spend time with Mary Ann.  She had been sick a number of weeks ago and had not been able to visit in a long time.  Mary Ann had a refreshing break from me, and I was able to get done some things in my office that demanded uninterrupted attention.  Not only that, but two more people have taken slots in the next two weeks to allow me to connect with others and give Mary Ann the stimulation of communicating with people outside of our little, confined world.

Mary Ann has been doing reasonably well in the past couple of days.  Saturday night was not the best for sleep, and tonight she just said the raccoons have returned.  I told her that there has been not trace of them in many weeks outside.  The snow would have immediately revealed evidence of their presence.  She was not convinced.  On the contrary, she simply said, “Well, two raccoons have returned!”  That does not bode well for tonight’s hope for very many hours of uninterrupted sleep.

Well, I had best get to bed.  Tomorrow will be an early day, since the Bath Aide was off for Martin Luther King Day.  I will need to get Mary Ann’s hair washed in the morning before her Tuesday morning group at church.  She was not up to going last week.  I hope she goes tomorrow.  She really enjoys that group of good friends.  They have a love and concern for her that warms my heart.

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.

 

January 16, 2010

Get Over It!!!!!!!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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Maybe it’s Lori’s Chocolate Chip cookies (see yesterday’s post) doing their anti-depressant wonders.  Maybe it is having an almost normal (for us) night’s sleep.  Maybe it is reading yesterday’s post in the morning — late in the evening it is easy to become pensive and full of self-pity.  Maybe it is the dramatic contrast of all that we in our household have compared to the pain and suffering of tens of thousands in Haiti in the aftermath of the earthquake.  Maybe it is just getting tired of hearing myself whine.

Whatever it is, I need clarify for myself and any who follow this blog, that what I am feeling in regard to my change of circumstances from Senior Pastor of a large, thriving congregation to the full time primary Caregiver of my wife Mary Ann is just experiencing to the full the dynamics that come along with any major change in life.  There is a letting go of the past and settling in to a new set of present circumstances.

What I am experiencing in letting go of the past has nothing to do with the congregation from which I retired.  In fact, if anything, the wonderfully nurturing and loving people, the caring and competent Staff that actually served as my primary support group during the very toughest time trying to work full time and care for Mary Ann, the generosity of the Leadership of the congregation, the Volunteers (as many as 65 of them at one time) who stayed with Mary Ann all the time I was working away from the house (sometimes staying with her when I needed time to work at home), the Volunteers who have continued to stay with Mary Ann at times for a year and a half now since I retired from being their Pastor, the huge cadre of people there who threw the most fantastic party imaginable when I retired, all of that kindness just dramatizes the contrast between that part of my life and this part of my life.

Would it have been easier if they had all been mean and ugly to me?  I suppose in one sense it might have made me want to get out of there.  I have often reminded people who were hurting after the loss of a loved one, missing them so much, that their pain is a sign of the depth of their love for the one they have lost.  In that sense, I am grateful for every moment of gut-grieving.  It validates the value of the years of service in the church.  It reveals the depth of love for so many over the decades.  It is one way my gut reminds me that those years were good years.

Then, there is the truth of the matter.  No one asked me to retire.  There was plenty of reason as I struggled to do justice to the ministry and give Mary Ann the care she needed, for the leadership to say to me, “Don’t you think it is time for you to retire?” Instead, they said, “What can we do to help?”  I am the one who chose to retire.  It was without a shred of doubt exactly the right thing to do for me, for Mary Ann, for the Congregation and for the Lord who granted me an easy and certain decision-making process.

My struggles now are just the living out of that decision, the living through of the transition from one career to another, one identity to another.  What the whining in these posts reveals is the ugly underbelly of a very ordinary, flawed, self-absorbed, sinful (the Biblical word for such things) somebody going through that transition.  On the positive side of it, I am convinced that the journey will be completed more quickly and completely by allowing the ugliness to emerge without sugar-coating it — naming it for what it is.  That way it is less likely to sneak up later and cause some unpleasant and unexpected consequences — at least that is the hope.

I have always marveled at the enormous power and generosity of God to be able to and to choose to use people like me to actually do stuff to accomplish God’s goals on this clump of dirt on which we all live.  As those of us in the business know and will (hopefully) admit, most of what God does is not so much done through us as it is in spite of us.

Mind you the recognition of what I have been doing recently in these posts, and my own charge to “get over it” does not carry with it a promise that I will no longer whine and complain.  Why on earth do you think I am writing this blog!  It is so that I will have a place to whine and complain.  What I do hope and pray is that what I am experiencing and my reflections on it, the processing of the feelings will provide some bit of comfort to others who sometimes think they are going crazy, can’t go on any longer, are the only ones feeling that way, aren’t as good and nice as they should be, are failing to meet their own expectations.

What I hope is that other Caregivers who read this will understand that they have a harder job than anyone who hasn’ t done it realizes, that what they are doing has as much value as anything anyone has ever done no matter how important it might seem in the public forum, and that their lives have a depth of meaning they might never have found without the privilege of caring for another human being who needs them and whom they love deeply.

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.

 

January 12, 2010

Grieving Loss of Former Identity

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , |
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She started trying to get up for the day at 3:30am.  It was all I could do to convince her to lie down and stay in bed.  Every time she needed help of any sort after that, she tried to get up and head to the table for breakfast and pills.  Finally, some time before 7am she/we got up.  The usual happened.  By the time the Bath Aide left, she was dozing in her chair.  I got her to the bed and she slept about three hours. 

Yesterday morning (Sunday) there was a Volunteer with Mary Ann, so that I could have some respite time.  I went to the lake to check out the Eagles again.  There were only a few, and the river was frozen offering them nothing on which to prey.  It was still a spectacularly beautiful day with the snow cover and the bright sunlight. 

When I got home, someone had dropped off the new Pictorial Directory for the congregation from which I retired.  We are still members.  We worship in the Sunday Evening Service, since it is the most easily accessible for Mary Ann due to the lack of a crowd and the time of day.  That service also provides a lower profile for my presence as the former Pastor of the Congregation.  Having followed two long pastorates, I know what a welcome gift it is to a new Pastor to be given the opportunity to settle in without the former Pastor around vying for attention.  I was given that gift by the two pastors I followed earlier in my career. 

I looked through the new Pictorial Directory.  It seems to be well done.  There were folks pictured who have been members for  years and some who were new to me.  There were some who just come for the pictures, but no longer attend church.  There were many whom I have not seen in the year and a half since I retired because they attend the morning services.  I miss them.  Members become extended family to the Pastor, especially since so often the ministry involvement comes at times in their lives when there is a certain level of vulnerability.   

The front section of the Directory was filled with pictures of the Staff, both paid and volunteer.  There were classes and worship events and gatherings of all sorts pictured — group after group.  What was exactly as it should be was that, of course, I was not in any of them.  That fact is evidence that what I sought has happened.  The Congregation is going on without me.  It is being led by a very capable Pastor, who is doing effective ministry.  All is as it should be.

If that is so, why did my insides hurt so much yesterday afternoon?  The answer at one level is obvious.  I was just doing some more grieving.  The visual impact of the new Directory was the verification that I am no longer a factor in the life of the Congregation.  What I sought when I left has happened.  It is a good thing.  The necessary letting go is just hard to do. 

There is another level  of grief that was deeper.   Looking at the pages left me with the sensation that it was as if I had never been there.   Understand, the folks with whom I interact from the parish are always gracious.  My feelings are no different from those of anyone who has left a career to move on to something else.  Yesterday afternoon I thought about the Pastor I followed in this parish after almost thirty years of ministry.   I wonder if or how often John had those feelings of grief. 

What happens when most Pastors retire is that they continue to serve in their profession, just in other venues.  Circumstances have not allowed me to continue in my profession in any way.   As a result, Sunday afternoon was just another time of grieving the loss of a life long career, one that served to define my identity.  This is the sort of grief work that can only be done by the person who has experienced the loss. 

I guess I was surprised at the intensity of the feelings that were triggered on Sunday.  It helped to attend church later that evening and hear the Vision of the new Pastor and the Leadership for the future direction of the congregation.  I resonated with the assessment of the current need and the commitment to tools that can help meet that need.  The grief work I continue to do does not include any perception of losses in the health and quality of ministry at the congregation I no longer serve.   It is just doing the work of accepting that I no longer serve there.  

I now serve here at my house.  The need here is clear. 

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.

 

January 7, 2010

Just Out of Sorts Today

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength | Tags: , , , , , , , , , , , , , , , , , |
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She looked over toward the walker leaning against the rail around the steps to the downstars.  She said she saw a cat.  Then she said maybe we should adopt it. 

At first I responded with the usual, “we don’t need the hassle of taking care of a cat.”  Then a little while later it dawned on me that there was a more appropriate response.  I told her that it would be fine with me if we adopted the cat she saw.  I don’t remember the exact wording, but it was something like “nice try.”  I added that it would be perfect since there would be no food to buy or litter box to clean.

There was another time that she was talking about something that I could not follow.  The hallucinations were not as constant as they were two days ago, but they were more present today than yesterday.  Yesterday especially, it was hard see her struggling so to track.  She wanted to make a list.  I got her a note pad and a pen.  She did write something about birthday cards.  (I have been trying to remember at the right time to phone one of my Brothers, whose birthday was January 3.)  There were a couple of scribbles after that, but when I offered to help in the writing, she got the sort of look that seemed to say, I have important things to write on the list, but I can’t get them into my mind. 

At those moments she is so helpless, and I am helpless to make any real difference.  So much of the time she has no words, then when they do come, she gets lost in what she was trying to say.  Sometimes what she says makes no sense, and she realizes it in mid sentence.  Other times she remembers things accurately and is right on with what she is saying. 

Maybe that is part of the reason.  Maybe it is the weather and the prospect of being homebound again for a few days.  Maybe I am just tired from the lack of an uninterrupted night’s sleep.  Maybe it is just getting tired of the constant demands of the task.  Maybe it is guilt over what I am not doing that I should be doing or the lack of patience with her.  Maybe it is the short days and long nights at this time of the year (Seasonal Affective Disorder).  I have just  felt out of sorts today.  I think Mary Ann has too.  I asked her if she was feeling goopy (technical medical term) or depressed.  I thought her lower lip was revealing that it might be so.  Her words did not confirm it.  She did decide to take a nap, indicating that she was tired.  It is hard to be sure about the lower lip sticking out as a non-verbal sign of sadness since that is one of the facial changes often brought on by Parkinson. 

Whatever is going on today in both of us, she is in bed and I am going to try to get to bed early tonight.  Maybe some extra sleep will help. 

By the way, those who read this blog and happen to be members of the parish from which I retired, let me clarify that my faith remains strong.  I have no doubt of the Lord’s love for me.   My future is certain and my purpose clear.  Even the Lord Himself experienced times he felt overwhelmed and needed to get away.  He got angry.  He cried.  He felt pain.  He expressed feelings of abandonment on the Cross.  It is a comfort to me that I don’t have to be afraid of my feelings however up or down they may be.  In fact my faith frees me not to run away from them.  I can own up to them, lean into them, experience them fully and move through them to the other side.  My relationship with the Lord is not sustained by my feelings one way or the other.  My relationship with the Lord is sustained by the Lord. 

I do not ask of those who read this blog that you share my faith.  I hope that what you read in these posts is helpful to you whatever your spirituality or lack thereof.  I share my faith on occasion because it is for me the key to my survival and the power that fills my life with meaning in the face of circumstances that seem bent on stealing our lives from us. 

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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