February 5, 2010

Change is the Only Constant

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , |
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Hallucinations ruled until about 1am or so last night.  Then she slept through with only one or two commode trips until around 11:15am this morning.  I didn’t get up unitl 9:30am.  Nothing ever stays the same.  Yesterday that was not a good thing.  Today it was a good thing.  She gave very little indication of having hallucinations.  She was awake most of the day until she went to bed tonight at about 8pm.  I will not presume to guess what tonight will have to offer.

After Mary Ann got up and took pills with some yogurt, we began talking about lunch already.  I suggested the possibility of going out, listing a few of her favorite spots.  She did not really seem interested.  I am wondering if the need for me to help her eat is beginning to diminish her interest in eating in public.  Some point at which she seems especially sharp, I will ask her about that issue.

I offered to make scrambled eggs and bacon.  She took me up on that offer.  As I was getting the eggs out, I noticed the untouched left over baked potato from a couple of days ago. I realized that would make great fried potatoes.  About a thousand dirty pans, dishes, pieces of silverware, cooking utensils, and bowls later, I delivered Mary Ann, two scrambled eggs, seasoned with parsley flakes, garlic and onion powder, salt and pepper, covered with shredded cheese that had melted on top, home made bread (Maureen’s) toasted and buttered, fried potatoes and onions, two slices of thick bacon, all served on a warm plate.

Have I gone crazy???  It all started with sighting that potato.  Then I fried some eggs for myself, which I covered with the wonderful Peach Salsa that I order by the case from Texas.  From the time I started cooking to the end of cleaning the thousand dirty items or putting them into the dishwasher, wiping off the stove and counter, must have been close to two hours.  This cooking business with all the accompanying cleaning up duties remains on the outer edge of my domestic capabilities.

Gratefully, Maureen had brought for the freezer some very tasty vegetable beef soup to go with the home made bread.  That was supper.  Mary Ann needed help with that, as well as some help with the two scoops of ice cream from B&R that we had picked up from there on the way home from the late afternoon doctor’s appointment.

While our visits are usually with the Cardiologisit himself, today we met with Advanced Registered Nurse Practitioner [ARNP] Angela .  She had seen Mary Ann once when she was in the hospital last fall.  She knows her case well. It was especially comforting to hear from her that they (she and the Cardiologist) often talk about our situation.  They appreciate that we are traveling a very narrow road of functionality, playing meds that do opposite things against one another to get a result that allows us to survive.

It was scary today when three blood pressure readings at different times in the appointment all were in the mid-200’s over the low 100’s, even when she was standing.  Because of her Orthostatic Hypotension (low BP when standing up), normally the standing reading is much lower. Not so today.  The fear, of course, is a massive stroke, as well as long term damage to her heart and kidneys.  We all know that.  At home the readings have been in the 160 to 180 over 90 to 100.  If we reduce the Midodrine that Mary Ann takes to raise her BP, she starts fainting.

I am going to reduce the dosage of Midodrine a little (cut the noon pill in half) to see if we can do so without resuming the fainting.  One irony is that the Seroquel we have been raising to reduce the hallucinations, has the side effect of increasing the likelihood of fainting. Another irony is that Mary Ann is taking a heart medication after her heart attacks a few years ago.  That medicine’s purpose is to reduce heart pain by lowering blood pressure.  Another of Mary Ann’s Parkinson’s meds (to reduce the dyskinetic movements caused by another Parkinson’s med, the main one) can cause hallucinations and fainting.  The main Parkinson’s med can cause hallucinations, fainting as well as the dyskinetic movements.  Without that med, Mary Ann cannot move at all.

As the primary Caregiver, it is my job to observe and help inform the doctors prescribing these medicines, since I am with her 24/7.  I have been given permission to adjust the Midodrine and the Sinamet (the main Parkinson’s med) within certain limits as seems appropriate.

The doctors have no clear insight into how much of the problem with hallucinations is caused by medicine and how much by the disease process (Lewy Bodies on brain cells).  They don’t know how much of the fainting problem is the disease process and how much the meds. Both the disease process and the medications produce the constipation, as well as other non-motor symptoms.

My head starts to swim when I try to think through the effects of all the meds with the goal of suggesting a workable balance of all of them.  The truth is, the doctors and pharmacists are no better equipped to find that balance, since they don’t see the effects on a day to day, hour to hour basis.  When we have raised or lowered dosages of meds, Mary Ann has not always reacted the same way in adapting to the change.  Sometimes, as with the Seroquel, the change comes, and then leaves quickly, leaving no clue as to how to proceed.

For whatever reasons, the last part of last night and this morning have included sleep; today Mary Ann was lucid and did not seem to have strong hallucinations; she ate tolerably well and has been sleeping fairly calmly for the last couple of hours.  I have no idea what will come between now and the morning, nor can I even begin to guess what tomorrow will bring.

There is one note I would like to add.  It may change tomorrow.  It is likely to change soon.  Since Sunday morning’s powerful experience, I have not felt angry with Mary Ann at behaviors that frustrated me in the past.  I have been far more accepting of the challenges in caring for her.  The feelings of irritation may return soon, but for the moment, caring for her has been less draining emotionally since I haven’t spent so much time feeling angry and frustrated.

That observation makes me wonder how much of the irritability emerged from simple grief over what the disese has been taking from her and from us for twenty-three years.  Again, there is no predicting how I will feel tomorrow or the next day about behaviors that have been frustrating to me in the past.  For the moment, there is a peace and a calm that has been missing for a long time.

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 31, 2010

Craziness Continues

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , |
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Last night when I helped her to the commode, while sitting there, she told me she was in jail.  Another time when she sat up on the side of the bed I heard her say, “we are unarmed.”  Who knows what that was about.  This morning she was angry with me that I couldn’t understand that she had to pick up her Grandmother (of course gone for many decades).  Then when we went in to get her dressed, she said something about the fact that her Grandma died, and if it were my Grandma, we would be get there right away.

She is at the table in the heavy chair with the arms, subdued and dozing off and on, with her head lying on the table.  Yesterday I asked her often if she wanted to move. She always answered firmly that she was fine.  I am not bothering her so much today, but watching her moves using the A-V monitor screen by the computer at which I am sitting.

Last night was worse than the previous two nights, if that is possible.  Actually, the first part of the night, about 11pm to almost 3am, was within our more bearable norm of just being up a few times.  As I reported in my post last night, she was almost wild with the hallucinations and activity as if she was overdosed on speed before she finally agreed to get in bed.  It started again some time around 3am.  She started getting up on the side of the bed, talking and wanting to get up, dealing with the dream or hallucination of the moment.

In the 4am to 5am hour, the times up were as close together as three minutes.  She was very upset with me, as was I with her for that matter, that I insisted that she lie back down.  Finally shortly after 5am I just gave up and got her up to come out to the table and eat.  I knew it was too early to start the daytime pills.

It was not easy to get the food in her mouth, but she managed some yogurt and toast.  She was still hallucinating much of the time.  By about 7:15am, she was ready to lie down.  I went back to bed also since I have been pretty wasted with the short nights and challenging nights and days.  She slept about an hour. Then we got up, got her dressed and gave her the morning pills withmore yogurt.

With both of our kids, Lisa and Micah, emailing the same response at the same time that I had reached that conclusion, I have phoned Home Instead to see if someone could be found to stay with Mary Ann overnight some time very soon.  I will talk with them again on Monday.  At the moment, they have a number of folks out sick, so it will be some time before this can work out.  One option is their $150 for a twelve hour shift overnight.  That one won’t work for us, since that is only doable if the person staying with her is  up a maximum of four times to help her.  If that were the maximum times I was up with Mary Ann, I wouldn’t need the help.  That would be a great night in our world.  The next option is the hourly one. It runs $16-$18 an hour. It is certainly worth it to me for the sake of survival.  I will probably start with one night a week.

The problem, of course, is that the current situation is almost no longer doable.  It is hard to imagine being able to handle that all day long seven days and all night long six nights a week.

In checking with the online Lewy Body Dementia Spouses group, some others have had problems with Seroquel.  Some found it to be a problem at a larger dose, but workable at a lower dose.  One of them even used the description, “as if she was on speed.” that I had used before reading that post.

I have to decide whether to take the next step tonight by increasing the Seroquel from 125mg to 150mg.  This is not an easy choice.  The hallucinations had been increasing to an unbearable level before I increased the Seroquel from 100mg to 125mg.  I had been waiting anxiously for the batch to arrive in the mail, looking at the increase as the hope for returning the hallucinations to a manageable level. The first morning after I increased the dosage the first step, there was a hint of a little more lucidity.  That faded quickly and the frequency and intensity of the hallucinations ramped up even more.

Do I take the next step in hopes that the evidence is wrong, and it might begin to improve the situation rather than make it worse?  Do I respond to the evidence that it seems to be making the hallucinations worse and pull back?  At the moment, I do not know which I will do.  I don’t know how much risk there might be of another increase making the problem worse and moving us farther down the road permanently.  With LBD it is common for strong meds to cause a loss that cannot be regained.  That level of vulnerability is one of the ways LBD differs from Alzheimer’s Dementia.

Whatever I decide, assuming this does not improve, next week I will phone the Neurologist’s office at KU Med Center’s Parkinson’s Clinic and ask for a full review of her meds, to see what changes might have some hope of mitigating this pretty much untenable situation.

I suppose I will also make some phone calls, possibly visit, one or two places that could serve as options if this ceases to be doable at home.  In talking with my daughter, Lisa, the idea of hiring someone either to live-in and help out with Mary Ann a few hours in trade or someone to stay a couple of nights a week re-emerged.  We did have someone we hired for a few hours a week some years ago. I still have an active federal ID number and state withholding tax number just in case we go that route again. We have a finished basement with egress windows in the bedroom and living area, and there is also a large full bath (shower only). That space was finished to allow the option of live-in help if we needed it.

I guess we have been in the frog-in-the-kettle mode.  Things have been moving past being manageable at such a slow pace that I didn’t really realize how hot the water was getting.  I guess it is time to find a way to reduce the heat before our frog is cooked (or goose – take your choice).

Mary Ann stayed at the table, I got lunch for her, and she ate very little.  At about 2pm, after a trip to the bathroom, she stopped at the bed and indicated that she wanted to lie down.  She has been down for about an hour now.  It is such a relief that she is sleeping for her sake and for mine.  While sleeping during the day is not always a good idea, any time that she is resting and secure is a wonderful respite for me.

Our Son Micah phoned and will be coming over with our Daughter-in-Law Becky and Granddaughter Chloe this evening.  It is over an hour one way, and Chloe had indoor soccer and basketball games today, so we really appreciate them coming after a long day.  They arrived in time for us to order pizza.  Mary Ann was not ready to get up from the nap she started after lunch.  She did get up when supper came. 

She was moderately responsive, compared to having been almost completely unresponsive most of the rest of the day (other than the morning hallucinations).  She did eat a little of the pizza (cheese sticks).  She went to bed again while they were still here. 

It was very helpful to me to be able to sit and talk with them and hear how they are doing.  It was good for Mary Ann also just to have them around.  It was a low key evening, but just spending the time together seemed to lift for the moment the pall that has been settling over us last few days in particular. 

It is done.  I gave Mary Ann the fully increased dosage of Seroquel tonight.  One option that is unfortunately the more likely one is that by three or four in the morning at the latest. she will be bouncing off imaginary walls.  If and when that happens, I will be running after her as she does.   The less likely but preferred option is that she will finally sleep well and have fewer and less intense hallucinations tomorrow. 

And so the ride goes on! 

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 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 7, 2010

Just Out of Sorts Today

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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.

 

January 5, 2010

Some Days are More Frustrating than Others.

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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I am not completely sure why.  Some things are harder to accept than others.  There is one visual cue that removes all my ability to keep things in perspective.  It takes me right up to the edge of my ability to cope, and then pushes me over.

There she was, half way across the bathroom, walking with her pants around her ankles.  I had stepped out for only moments to give her some privacy.  On the way out, I asked her to please remember to push the button when she was done and reminded her not to get up until I arrived to help her get up.  She did neither.

That visual cue seems to release my deepest fears that the next fall will be the last one.  It surfaces every feeling of frustration that comes when her choices seem to fight against the very help I am trying to provide.  That visual cue pushes me over the outer edge the confidence that I can care for her here at the house until the end.

I got her dressed, put her on the bed, and had to leave the room for five or ten minutes to gather my composure and try to regain perspective. I wonder if part of my reaction is a safety valve blowing off steam to keep the boiler from exploding.  I wonder if it isn’t a grieving process going on that I ignore until something like that visual cue shatters my illusion of control.  I wonder if part of it is my refusal to admit to myself just how hard this is.

Yesterday morning when I went outside to clear the drive and sidewalk of snow for the Volunteer, she tried to get up from her chair, fell and took with her the table in front of her, knocked the computer monitor to the floor along with a cup with some juice in it and a number of other things on the two tables around her.  She was lying in a heap among all of it. Gratefully, as always, she was not hurt at all.  I was upset that I couldn’t so much as go outside to shovel the sidewalk without her getting up, creating the vulnerability for a fall.  Then I felt responsible.  While she couldn’t remember why she got up, I had not gotten her a new box of Kleenex, I had not gotten her fresh water, I had not taken the audio receiver with me outside so that I could hear the electronic doorbell, which she would not have pushed anyway.  I realized again how hard it is to anticipate every impulse need and provide for it so that there will be no need to get up.  It is hard to anticipate and cover every impulse need of another person — one who cannot tell you those needs in words.

She has been having a difficult time keeping things clear the last couple of days.  There are flashes of lucidity, but most of the time, it the hallucinations have continued, verbal communication has been virtually gone, and there have been times of great confusion.  At supper tonight, after working on the baked potato on her plate for a long time, mostly with her fingers, I asked if she saw the meat.  She said no.  A large piece of meatloaf was there on the plate right next to the potato she had been working on. She has often been in eyes closed mode.  She will be acting in every other respect as if she is doing things normally, except that her eyes are slammed shut tightly.  Often when that happens and I ask her to open her eyes, she will answer that she can’t.  I have learned how to walk her from one place to another when her eyes won’t open.

I just came back from the bedroom.  Mary Ann had gotten up on the side of the bed.  She was trying to pick up needles that were not there.  As we were sitting there, a couple of times she told someone to stop pulling on the quilt hanging on the wall a few feet away.  She asked we how soon we would be getting out of here.  Then she asked how we were going to get all the furniture back.  I asked if she was thinking that we were in a different place from our home and that the furniture had been moved here.  She said yes. Like Capgras Syndrome, this is a Delusional misidentification syndrome.

I just went back again.  This time she asked me to take the girls out of the bedroom.  When I asked if they were our Granddaughters, she said no.

At the same time, earlier today when I mentioned the library, she suggested that we eat lunch there.  Since we couldn’t find a parking place, we at at Bobo’s Drive-in.  At the library, she managed to pick out two books from the large print section. We had sundaes at G’s after the library.  When we got home she ended up wanting a nap.  After an hour and a half, after taking medicine and using the bathroom, I took her out to watch television.  She got up and headed back to the bedroom to nap some more.I had to wake her up for supper.

Back again. She is just having a terrible time accepting that it is night and time to be in bed.  She wanted to get dressed this time.  It is about 12:15am at the moment.

I have just been with her a few more times.  The last time included a snack and a paper towel to wipe up something that was not there.  It is about 1am now.  I am wondering how much of the night will be spent with the delusions and hallucinations.  Last night we were up quite a number of times.  There has been very little sleeping in happening in the last week or so.  The interrupted sleep is not helping the coping skills, nor is it helping the delusions and hallucinations.

I am going to edit this now and get to bed in hopes that my presence will help.  There is no good reason to hope it will help, but I am too tired to stay up any longer.  I guess interrupted sleep is better than no sleep.

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

 

December 31, 2009

Wednesday’s Open Door Policy

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Shortly before 7:30am, Duane dropped off Eva at the house so that she could spend a couple of hours with Mary Ann.  Then came Shari and Edie for the Spiritual Formation Group that meets on the deck or in the downstairs family room.  Since the deck is covered with snow, it was, of course, a downstairs morning.  All is well whichever place as long as the coffee is made. 

A little later, Zandra came to give Mary Ann her shower and wash and dry her hair.  About an hour after they all had left, Kristie came to do the once a month cleaning of the house. 

Actually, we have an open door policy most of the time.  We have been very private people, especially Mary Ann.  All that changed in the last decade.  Since getting to the door is not always an option when someone rings the bell,  those who have come regularly to spend time with Mary Ann know that they may just need to walk in, if no one answers the door.  They walk in and announce themselves so that we will know that they have arrived.  We have become quite accustomed to the open door policy. 

While we did not get out today, the many visitors provided an antidote to any sense of isolation in our little cabin.  No cabin fever today.

Mary Ann did nap for a couple of hours during the day.  That allowed me to get some things done at the computer.  I did not spend time on the online retreat until she went to bed tonight. 

These two days looking at mental snapshots of events during the Teen/Young Adult years has again been thought provoking.  The Spiritual Formation Group discussion blended with the matter of receiving gifts from experiences, good or bad. 

I thought about last night’s post and the role singing played in my life.  While the high school and college years provided much affirmation as I participated in leadership roles, sometimes doing solo work as well as singing in ensembles, it was different at the Seminary.  Music  was still a dominant feature.  There was a three week choir tour that took us (Mary Ann and me) to England, Holland, Germany, Austria, Switzerland and Belgium.  There were powerful, moving worship experiences singing in the chant choir and performing Bach’s St. John Passion. 

My ego was taken down a few notches in the Seminary Years.  Illusions about my ability were shattered as I stood next to a tenor who had a Master’s Degree in Vocal Music from Indiana University.  I realized that I had been measuring my ability against non-music majors.  Louie provided a needed perspective. 

My injured ego came with me as I continued to sing in the Chant Choir at the Seminary, and the Cantata Choir that included people from the city.    The gift that came from those years was a more realistic view of my abilities.  While the truth can be painful, it is better to make friends with the truth than spend much time with pretense.  Another gift was an appreciation of being a part of something greater than one person.  It became less about me and more about the music and its impact on those listening. 

That shift in focus seems to me to have helped in the transition from a high profile role as Senior Pastor of a large and vibrant congregation, to a lower profile role of being the full time Caregiver to someone who needs that care, someone to whom I am fully committed.  

Those years included the joy that December 18, 1965, when Mary Ann and I were married in our home congregation in Northern, Illinois.  We had both had finals at our respective schools in St. Louis the Friday before the Saturday we were married in Aurora, Illinois, outside of Chicago. 

Those years included the death of Mary Ann’s Dad, just two or three weeks after the wedding.  He had walked Mary Ann down the aisle. 

The Seminary years included a year at a church doing an Internship, called a Vicarage.  It was the 60’s, including the three assasinations.  I became disillusioned with the institutional church.  I refused to accept a Call to a parish on the day my classmates all received theirs a few weeks before graduation.  Those were dark days.  I didn’t know what to tell Mary Ann, since I didn’t know what to do.  Lisa was due to be born about a month after graduation. 

Lisa was born on the Fourth of July in 1969.  She brought light to those dark days.  I can remember holding her as we watched the moon landing, wondering what it would be in store for her as we moved into the space age.  I remember her Baptism in the Seminary Tower’s Baptismal font, with water from the Jordan that John Damm had added before doing the Baptism. 

Out of that time emerged an opportunity to teach at Concordia Lutheran High School in Ft. Wayne, Indiana (where I had spent two of my college years and my Internship).  It was a school of some 900 students.  There were some volatile times there, which will be for a future post. 

Those years were a roller coaster of experience in most every way.  They provided a lifetime worth of highs and lows.  And the ride was just beginning.   The gift from those years came in the form of the recognition that most anything could happen, and with the Lord’s help, we would survive.  Little did we know then, just how important that learning would be. 

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.

 

December 30, 2009

Second Day of Escape from Cabin

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We got out of the house again today!  It just feels good to be out in the van running errands after so long stuck inside.  There was no nap again today.  I certainly hope in spite of that, there is more sleeping tonight than there was last night.  It was snack time at 3:15am. 

We ran errands and ended up at the grocery again today.   Mary Ann likes being at the store.  It seems to be one of the most engaging and entertaining activities for her.  It frustrates her that she is no longer the chief of food preparation and pantry stocking. 

Lunch was left over chinese from yesterday.   Supper was Chicken Tetrazini that was brought to us from church by the Parish Nurse for the freezer.  I cooked some fresh broccoli to add a veggie.  The Tetrazini tasted wonderful to both of us.  I am always fearful that anything from the freezer will not spark Mary Ann’s interest, but she loved this meal too. 

The Parish Nurse program at the church from which I retired has been one of the strongest ministries.  It is so strong because Margaret has made it so with God’s help.  She visits folks who are homebound regularly, taking vegetables from Glenn’s and her vegetable garden, flowers from their flower garden, leaves from their Maple tree in the fall, CD’s of the last Sunday’s church service, and from the church freezer she brings food that has been designated for use by the Parish Nurse.   The sense of community and support from church is vivid for those who receive her ministry and the ministry of those who assist her. 

Since there was no nap today, it helped that a Volunteer was scheduled for two and a half hours this evening.  I got out for a coffee refill.  I got to the liquor store to buy a half bottle of Asti Spumonti so that we can tie one on Thursday evening, New Year’s Eve.  That will happen when we eat cheese and crackers and toast the New Year at about 8:00pm.  It will be the New Year somewhere on the planet by then.  The worst part of it is that every year we do that, we have of the half bottle left to sit in the fridge for a while.   I guess we are not the rowdiest partiers around. 

The time the Volunteer was here gave me a chance to focus attention on the online Ignatian Retreat I have started.  This week’s activity is remembering the mental snapshots of those events from the past that impacted our formation.  This evening began the Teen and Young Adult reminiscences. 

Many of them related to the choirs I was in.  I perceived myself to be a non-entity in social terms at the large schools I attended.  I was utterly shocked when my name was suggested for President of the 104 member Sophomore Choir.  I got to serve as President and Student Conductor or four more choirs through high school and college before entering the Seminary.  Singing was at the very center of my life from Junior High through the end of the Seminary (8 years post high school).  Music has had a sustaining and nurturing presence in my life for all the years since.  It feeds my spirit in a way that allows me to continue doing what I am doing now. 

One of my most vivid memories is of the night when I was about fourteen years old that I decided to go in the ministry.  It was a very spiritual experience.   There was not magic nor were there voices from above, just some powerful mental conversation that seemed to reveal the Lord’s leading to the decision.  I am always suspect when someone says the Lord told them to do something.  It seems often to be an attempt to use the Lord to make people agree with something the person has decided is so.   The decision to go into the ministry was tested and reconsidered as other career options moved to center stage, one in Physics and the other in Choral Music. 

That memory confirms for me a decision-making process that, at least in terms of major decisions, has seemed to leave me completely secure in whatever I have chosen to do.  I have never regretted a major decision or second-guessed it.  Whether right or wrong I have given myself completely to whatever has followed each of those major choices.  I have not lost energy because I wondered if I was doing the right thing.  I may have lost energy for other reasons, but not because I doubted the choice I had made.  That has been the key to dealing with the challenges that come with full time Caregiving.  As those of you who read these posts know well, I have plenty of times of frustration with my role and my own limitations, but I do not question the decision to choose the role. 

The time in life that is the focus of today and tomorrow is the time during which Mary Ann and I met and, three and a half years later, married.  I had endured the typical rejection by the first couple of Junior High crushes.  I will say it certainly did not feel typical.  I met Mary Ann (having known her name since we grew up in the same church) the summer after my first year in college. 

Romantic love is, of course, very selfish.  I fell in love and found that a gaping hole in my insides was filled by that relationship.  I can only speak for my own feelings on the matter.  I do not actually know much about Mary Ann’s feelings at that time, or since then for that matter, since she holds her feelings close to the vest, as they say.   While we have had the usual ups and downs, the relationship has remained secure for these many years.  I feel no less in love with her than I did forty-four years ago.  Even the waste management duties have not changed that.  If anything, the feelings are deeper and more fully developed than when we began our life together.  The struggles of these last few years have drawn us closer.  All of that does not preclude our getting grumpy with each other, or our resenting each other when things are not going well for us.   It just puts the problem times into perspective as just a part of a strong and healthy relationship. 

The online retreat is providing lots of fodder for the task of finding meaning in the circumstances in which I am living as a Caregiver.  Finding  meaning in the Caregiving tranforms frustrating days into fulfilling days.

 

December 29, 2009

Escape Cabin! Plan Sunroom Addition.

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I asked Mary Ann if she wanted to go out to lunch.  A ridiculous question, since she always wants to go out.  The sun was bright.  The temperature headed for a balmy 33 degrees.  All but the major thoroughfares were still in pretty bad shape, but it was doable.

We ate at Perkins, then headed for some errands.  Excluding a pit stop at the house, we were out from 11:15am to about 4:30pm.  I guess we had a lot of pent up need for running errands.

We had an appointment this afternoon that related to obtaining the means to accomplish a project here at the house.  While we have limited resources, there is a need to do whatever we are able to do to make our environment as pleasant and stimulating and nurturing as possible.  Most of the days we have left together will be spent here at home.  It is reasonable to expect our freedom to get out to diminish as time goes by.

We have a wonderful, calming pondless waterfall that has been installed in our back yard.  There are probably thirty or more trees surrounding the area behind the house.  There is a secluded feel to the space.  The problem is that we can’t see any of it from inside the house.  We have to go out on to the back deck to enjoy it.

Town homes are close to one another and often have very limited window space.  One reason we chose this home was that it had more natural light coming in that most of them, but it still is very limited.

Before we added the deck, there was a small patio under a portion of the roof in the back corner of the house.  When we built the deck, it included that patio area and extended into the back yard.  We are going to enclose the area under the overhang so that it will become a sun room.  The interior walls will be removed other than a column to support headers that keep the roof properly supported.  There will be a six foot by nine foot area added to the interior space.  There will be sliding glass doors flanked by windows the same size as each panel in the sliding glass doors.  There will be light!! By the way, yes, there will be Vertical Blinds to provide privacy at night.

Through those glass doors and windows we will be able to see the waterfall and plantings.  I will be able to see the birds that come to the twelve to fifteen bird feeders clustered around the deck.  Mary Ann is just not comfortable spending time outdoors. This way she will be able to enjoy the waterfall and back yard from inside the house.

I won’t deny that this project, along with the waterfall, is an attempt to satisfy my need to enjoy the outdoors.  We are here inside this small living space all day long every day much of the time.  This project will bring the outside in so that our cabin fever might be diminished even when we are homebound.

This afternoon the commitments were made.  The project should begin some time early in February.  Who was it that said his goal in retirement was to spend his children’s inheritance?  Sorry, Kids!

Since we were out for most of the day, there were no nap times.  What is odd is that while Mary Ann has slept pretty well the last couple of nights, having had one or two long naps during the day, she seems unable to get to sleep tonight.  There has been almost constant motion in the bedroom.

Since there were no naps, I have not had any time to spend with the online Ignatian retreat today.  Mary Ann did get in bed early tonight, even though without sleeping.  When she first laid down, I read an email that included a link to a YouTube video of the Taizé community singing in worship.  That link took me to a treasure trove of Taizé music with video or slides.  I spent the next hour trying to listen and watch.  That music touches me deeply at a Spiritual level.

I used the word “trying” in describing that experience, since Mary Ann’s movements caused me to hop up every few minutes.  In between times helping her with the television remote or adjusting the covers or using the commode or having a drink of water, I watched the monitor wondering what was coming next.  I found the conflict between the deep feelings I was experiencing through the meditative music and the constant attending to Mary Ann to be almost unbearable.

It is just a part of the Caregiving task for anyone who is attending to another’s personal needs.  What is so difficult is that the person in need becomes the constant center of attention, with no opportunity to just relax and focus on something else.  Any other focus needs never to draw attention completely away from what she is thinking or feeling or needing or doing or considering doing.  The pieces of Taizé music are anywhere from two to five minutes long.  I was not able to listen to even one of them all the way through without at least one trip to help Mary Ann.  This time after she goes to bed is the time I count on to disengage a bit and focus on something to stimulate my mind.  I have been up and down more that a dozen times while trying to write this post.  It is at times like this that the task of full time caregiving feels the heaviest.

I will head back to the bedroom now in hopes that there will be some sleeping that will follow.  The odds are not good for that happening.

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.


 

December 28, 2009

Shoveling Snow and Scraping Ice

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Another day in the cabin.  I thought we would try the Evening Service at church tonight, but King Colon, a high blood pressure headache, and an unwillingness to tackle the cold and the wheelchair on ice and snow while trying to get into church all combined to change our minds. 

Today was a better day.  One reason was that I made a pot of strong coffee to feed my caffeine addiction.  Yesterday, some stomach discomfort interfered with the coffee intake.  Another reason the day went better was that we had a morning visitation.   It was nothing supernatural, but it was uplifting.  Don, Edie and Daughter Gretchen surprised us with a visit.  They were bearing gifts, Gretchen’s soup (very tasty and very filling), cookies from church (made by the Deacon who preached and his family), and some other cookies, bundt cake and muffins.  The food and the conversation helped stimulate a more positive atmosphere in our cabin. 

The other reason the day was a bit better was that I got outside, shoveled snow and scraped ice, stimulating my brain with endorphins.  Having grown up in Northern Illinois, I am not unfamiliar with such things.  Actually, I have an unpublished goal of having the first completely cleared and dry (down to the cement) driveway in the subdivision.  I was disappointed that I did not find the energy to get it done right away, but the wind and blowing snow made it almost impossible.

The Homes Association had used a bobcat to clear the worst of the snow from the drive, but there was a layer that was packed down by the treads of the bobcat, and then blowing snow added a couple of inches more.   At least looking from my drive, it appeared that no one else was down to cement either yet this morning. 

I began shoveling.  Some of the drifts at the edge of the driveway were pretty tall.  I paced myself as I worked on the drive.  Every time I lost my footing for a bit, I thought about the consequences of my falling and cracking my head.  Then, of course, the thought of all those older men who had heart attacks while shoveling snow came to mind.  When the next door neighbor came out for a moment on the way to her car, she encouraged me to leave the task for the sun to accomplish in coming days.  I assured her that I would be careful.  I told her that if I was foolish enough to over-exert and had a heart attack, my children would summarily finish the job, all the while asking me what I thought I was doing out there shoveling snow.  They are fully aware of the challenge of dealing with their Mom’s illness if anything were to happen to me.  They would not hesitate for a moment to do whatever is necessary, but given their own obligations to spouse and children, it would be a challenge of monumental proportions. 

After shoveling the snow, there was, of course a layer of ice to be dealt with.  I am very proud of my method for dealing with an ice covered driveway.  First, I have an ice scraper just like the one we used regularly when I was growing up in Aurora, Illinois.  It is the perfect tool for loosening the ice so that it can easily be removed.  Second, I have the secret knowledge.  Removing ice has nothing to do with temperature.  It is all about color!  More accurately, it is about dark color.  

Even on a cloudy day, there is a certain amount of sunlight that reaches the surface of the earth.  White repels it.  Dark absorbs it.  My goal is to get rid of as much pure white surface as possible and reveal or add as much dark surface as possible.  The snow is shoveled down to the top of the ice. The ice is dark.  The scraper is used to wherever there is an edge that it can be forced under without too much effort.  Then comes the kitty litter, the cheapest available.  It is sprinkled liberally over any ice remaining on the drive.  The sunlight warms the dark particles and they work their way through the ice.  The sunlight also warms the cement under the ice so that the ice does not stick to it.  Then scraping again and again whatever has been loosened, clears the cement with relatively little effort. 

Some ice remains, but it has kitty litter on it.  The sun and the wind should melt and evaporate what is left tomorrow in short order.  Understand, we have the advantage of the drive being fully exposed to the sun since it faces south and it is not shaded by trees. 

Added advantages to using kitty litter are that when it first goes on, it provides traction, reducing the likelihood of slipping, and it does no harm to the grass when the snow melts (at least I don’t think so).  The one negative is that it clings to shoes and tracks into the house when the shoes come in.  The trade off is worth it. 

I am continuing the online retreat.  Mary Ann napped twice today.  I used the time for the shoveling and scraping, but there was enough to do some more thinking about and recording of childhood experiences and their impact on my formation.  The mental snapshots of various moments in my childhood have elicited strong feelings, some pleasant and some very unsettling.  I witnessed a worker killed by the walls of a sewer repair ditch falling in on him.  There was a murder/suicide across the street.  A kitten was run over as I watched — another put down.  There was talk about our oldest brother who died on Christmas Eve when he was five years old.  His appendix had burst.  I simply could not ignore the concept of death.  My Rheumatic Fever shaped my self image as a buddy played a game of tag with me in which my touching anyone would give them Polio.  I sat out of gym classes and games at recess time. 

Those experiences forced me to come to terms with death fairly early in life.  My faith was powerfully reassuring.  I suppose the Rheumatic Fever experience gave me a certain level of compassion for the sick and those who feel themselves to be on the outside looking in.  A variety of experiences during those years produced feelings of guilt whether deserved or not.  It is a clear understanding of the Grace of God that emerged early on as I processed those experiences.

By the same token, there are wonderful memories of hours spent outside with the bugs and birds and tadpoles and weeds and grass and sunshine and puffy clouds and rain and wind.  There is no doubt that those experiences have programmed me to find peace and joy and satisfaction in the natural world. 

What I learned from those early experiences has certainly helped shape who I have become.  Mary Ann has not really been very forthcoming with stories of her early years.  Most of what I know about those years has come from listening to her talk with her three friends from Fifth Grade on.  I have little doubt the best stories about those years have been told outside of my hearing. 

So far, two days into the online retreat, I am glad to be doing it.  There have been two short Scripture readings so far.  Both have been very instructive in the process.  If you are interested, the following link will take you to the home page.  There can be found a link to the “Online Retreat.” http://onlineministries.creighton.edu/CollaborativeMinistry/online.html

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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