Therapeutic Activities

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January 24, 2010

Couch Potato Day

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , |
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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

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , |
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“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

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , |
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“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

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
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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 14, 2010

Eye Doctor’s Report

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , |
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It was the top line, one letter only, an E.  It was huge.  With her right eye, Mary Ann could not read it.  The Nurse had gone through all the sizes of letters available until finally she had the screen full from top to bottom with that one letter.   She could not read it. 

While Mary Ann seemed unfazed, I was taken aback by the impression that Mary Ann was essentially blind in one eye.  She had been to the Optometrist within the last year and a half.  She had gotten new glasses.  It was hard to imagine what could have caused such a dramatic change so quickly.  Neither she nor I had noticed her losing sight in that eye.  It just did not compute.

The Doctor came in to get more information and do a check of her eyes before the dilating procedure that would follow.  When the Doctor checked her right eye, she was able to read with difficulty letters on the screen that were large, but a size that allowed four somewhat smaller letters to show on the screen instead of only one huge letter.

After the glaucoma check and the dilating procedure had taken effect the doctor returned.  I asked her what might have caused the swelling that appeared yesterday and had disappeared by today.  She said it might have been a  chalazion, a blocked oil gland.  She observed that sometimes they will go away after a time and sometimes they have to be surgically removed. 

Then I asked her about the large quantity of thick, dark mucous that would sometimes gather on the edges of her right eyelid.  She mentioned the possibility that it might just be a flareup of blepharitis, an inflamation of the hair follicles of the eyelashes.   She prescribed a topical antibiotic if that should flair up again.  I will admit, having experienced blepharitis before, I am not convinced by that explanation, but we will use the antibiotic should it happen again to see if it helps.       

Neither the chalazion or the blepharitis are anything of major concern.  Then the Doctor checked the retina in each eye very thoroughly.   Her observations were good news in that Mary Ann’s retinas appear to be in very good condition.  The margins (?retina or eyelids) are in excellent shape, clear and clean.  She has cataracts, but ones that are a long way from needing surgery. 

The bad news is that the vision problems seem pretty clearly to be neurological.  The images from her eyes mechanically are being transmitted appropriately, all the parts working well.  The problem is in the processing of that information by her brain.  The Doctor did not say it, but it seems reasonable to conclude that there is no treatment for that problem. 

While I forgot to mention the stroke Mary Ann had about three years ago, it seems reasonable to consider that a factor in this problem.  The cluster stroke effected her right side.  The problem is with her right eye.  Ever since her stroke she has had problems using utensils to eat.  I mentioned in earlier posts the time she couldn’t see the meatloaf on her plate but could see the baked potato, the time she got up to get her Pepsi when it was right at the top of her plate inches from the food she had been eating. 

When I asked Mary Ann how she felt about the appointment, she asked if she needed new glasses.  I don’t know how much of what was said settled into her awareness.   We will make our routine appointment with the Optometrist since we are due anyway.  Mary Ann very often says she needs new glasses.  She seems to be convinced that any problems seeing are the fault of the glasses.  Since the iris of the eye is run by the neurotransimitter (Acetyl-choline) used by the Autonomic Nervous System (ANS), her compromised ANS (and the medications that treat it) has been affecting her vision for many years.  More of what the Parkinson’s and the Lewy Body Dementia have brought along with them when they joined us on our journey through life.  

As always, Mary Ann is just taking it all in stride.  It seems to be something of a blessing that some of the things she is dealing with have just not fully entered her awareness.  That may be by choice, or it may be a function of the Parkinson’s Disease and the Parkinson’s Disease Dementia.  It may all be sinking it, may simply be choosing not to talk about it.  It may be a defense mechanism to keep from dwelling on the problems.  It may be any combination of all of them.

Whatever is so, there seems to be nothing resulting from the appointment with the Eye Doctor that changes our current version of normal.  That is about the best we could have hoped for. 

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 13, 2010

Eye Problems Emerge

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , |
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It was an odd night.  Mary Ann struggled with the hallucinations and restlessness again last night.  I was up late working on last night’s blog post. After settling, she slept reasonably well.  I got up this morning to get her ready for Bible Study.  Her need to sleep trumped her will to get to Bible Study.  It was clear that she would not be able to get up.

I had showered and cleaned up in preparation for getting her ready to go.  When it was clear that she would not be going, I laid back down on the bed, since I had accumulated a need for sleep also.  It was not until almost noon that I woke up.  She got up about forty-five minutes later.  As I was getting dressed she asked if we could use the Visine again this morning.  She had not yet opened her eyes, which is not unusual for her — one of the collection of problems that come with the Parkinson’s and the medications used to treat it.

When she lay down for me to put the Visine on her eyes I saw it.  There was a swelling about the size of a small marble, more accurately, the size of a garbanzo bean (how is that for descriptive) in the corner of her right eye next to her nose.  It looked as if a tear duct might be clogged.

Mary Ann has had problems for a long time with her eyes.  She has had the struggle to open them frequently.  They have on occasion started watering profusely.  It has not been unusual for her to ask for the Visine.  In recent weeks sometimes there has been a large quantity of matter at the edge of her eyelids, usually her right eye.

Today’s swelling precipitated the call to the Ophthalmologist (an Eye Doctor with an MD).  At first the call was a little uncomfortable.  The receptionist seemed almost annoyed that I was calling about an appointment.  She tried to get us to go to our Primary Care Physician or Optometrist first.  I made the point that we would just end up back with the Ophthalmologist.  I had explained what was going on with Mary Ann, and finally she said she would try to talk with the Dr.’s nurse.  Gratefully, when she returned, there were a couple of options for tomorrow.  We will see the Doctor at 2pm.  I was puzzled that from the moment the call began the tone of the receptionist seemed to suggest that I had no business calling to get an appointment. I have met the doctor before, years ago when I had a cyst on an eyelid removed.  She seemed very pleasant and very competent.

This afternoon we had another appointment with Stacey about the remodel.  She brought some great options for window coverings for the new sunroom, and a book of samples of cork flooring for that new space.  The look of the cork, its durability, the warm feel of it, its ease of installation and its ability to cushion a fall have all combined to convince me that the cork is the way to go.  One thing drawing me to it also is that it is not one thing pretending to be another.  Ceramic tile would hurt Mary Ann if she fell.  The laminates look great, but still try to look like something they are not.  There is more deciding to do, but we seem to be progressing.

In reflecting in last night’s post on my retirement and the grief work that needs to be done as I let go of a life-long career and identity, I concluded the post this way:  “I now serve here at my house.  The need here is clear.”   The grief work that is going on at this point in my journey involves letting go of what has been.  It also includes making the transition to what my life is about now.  I suspect that transition is not yet complete.  One of the reasons writing these posts is so helpful is that doing so provides me the opportunity to gain a better understanding of what is going on in my own heart and mind as we tackle the Parkinson’s and its consequences in our lives.  Sometimes my mind is in one place and my gut in another in acceptance, feelings of fulfillment, and finding meaning in what we are doing her together.

The journey goes on, the processing of each experience is another step in that journey.  Just as is so at this time of the year in the thawing streets of this city in Kansas, there are a lot of potholes to be negotiated.

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 9, 2010

The best laid plans have aft gang aglay

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , |
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The following post was written on Thursday, January 7, 2009, but not published until Friday, January 8, due to Internet problems:

The best laid plans sometimes go astray. Feeling out of sorts yesterday, I went to bed early in hopes of a good night’s sleep providing an ointment to salve my sore spirit. Demon Lewy Body Dementia (doesn’t the word dementia derive from the word demon) had other plans.

Mary Ann simply could not sleep – for the entire night. I was involved with her needs in some way, two to three times an hour. There were the commode trips. There were two snacks, some drinks of water. There were lots of times sitting on the side of the bed, needing to be situated again when lying back down. She usually can’t handle the covers without help.

There was a long interaction in the middle of the night when she wanted to go out into the Living Room to sit and try to read. The problems with that idea are many. First, when she is up, she still needs help often with the same needs she has during the day. Then, the prospect of sitting up at night for a long period of time, then sleeping during the day risks shifting nights and days, making our system almost impossible for both of us. Those of you who have raised little ones have probably experienced the time when the tiny ones seemed to switch nights and days, making your lives pretty tough for a while.

After wanting to get out of bed multiple times throughout the night, when it got to be seven in the morning, she needed to get up. As usual after a bad night, she took her meds, had breakfast, and in an hour or so ended up back in bed sleeping soundly. I am of course wide awake and writing this. It is my understanding that trying to compensate for lack of sleep at night by napping during the day does not actually help, in fact just makes the sleep deprivation problem worse. It is harder to get to sleep then at night. That and my general inability to nap during the day results in my staying up rather than napping while she is napping. The general wisdom is to go to bed at the same time and get up at the same time each day. The general wisdom does not take into account multiple times up during the night in between those two times.

Of course, the lack of sleep is increasing the problem with hallucinations. There were the people in the house again last night. This morning there were a variety of things she saw outside the windows, and in the house things that needed to be picked up, tiny chains in her hands. There was one of those interactions in which she was talking as if it was just an ordinary matter while saying things that made no sense at all. About half way through lunch, she started to get up. I asked what she was going to do. She said she was going to get her Pepsi. The cup of Pepsi was sitting at the top of her plate with the can in back of it, just as it is for every lunch.

On the other hand, she asked if this is the day Stacey would be back to talk about the blinds and painting the interior of the house. She remembered that correctly. Then she suggested that we paint the interior a light blue, just a touch of blue. Because so often the lucid moments come, I try to work hard at tracking when her words are not computing for me. Sometimes a different word will come in place of the one intended. Yesterday when she suggested we adopt the cat she was seeing with her “magic eyes” (her words for the hallucinations when she accepts that they are hallucinations), she said maybe that cat could be “adapted.”  It took a moment for me to catch what she meant.

In spite of the difficult night, at the moment, I am feeling better today than yesterday. Maybe it is that adrenalin is playing a bigger role in sustaining alertness today. I just took a break from writing while Mary Ann is napping to do a bit of shoveling outside so that I can get to the birdseed. I have fed and watered the birds. It is invigorating outside since the wind chill is between twenty and thirty degrees below zero and the new three or four inches of snow is blowing around. The air temperature is predicted to reach a high of five degrees above zero and a low of eight below tonight, follow by a low of twelve below tomorrow night. Needless to say, we will not be going out with Mary Ann in the wheelchair today or tomorrow. The most we could do is head out in the van and have Mary Ann stay in the running van while I run into the store. There are a number of things on the list, but none that we can’t survive without.

The toughest thing today so far is that the telephone land line is out, eliminating out DSL access to the Internet. I certainly do feel disconnected to the outside world. I forgot just how much time I spend connecting with others through email and the Worldwide Web. For being pretty much technologically illiterate, I sure depend on the technology a lot.

Right now, my interaction with the outside world, is enjoying watching the dozens of birds that are enjoying the fare I have provided for them. We did end up going out in this weather. I discovered that we needed to return some videos. We went to the grocery and I ran in to get the items. She decided that she wanted take out Chinese from the grocery in spite of the fact that I had a roast, potatoes, onions and carrots cooking in the crock pot. It frustrates me that Mary Ann so often will not eat what I cook, even when it is something she used to eat and enjoy. I decided it was not worth arguing with her, since my goal is that she have plenty of nourishment. She ate the Chinese and I had the roast and veggies.

The above was written yesterday on a Word Processor since the Internet was not available.  The really bad night was the night before last.  Last night I went to bed even earlier.   Until about 12:30am, Mary Ann was disturbed by vivid hallucinations.  There were the people again.  The little girl was there.  She was confused about the time.  At one point while lying in bed she said our Daughter, Lisa, was on the phone.  She had no phone. 

After she finally went to sleep, she slept the night.  I got up at 7:30am to get ready for the phone line repair person who was due between 8am and 12pm, but came at about 1:30pm.  Mary Ann slept in until after 9am.  After the commode trip, she went right back to bed.  She was barely awake for the commode trip.  She slept until almost noon.  I think it helped some since so far today the hallucinations have not been as many and as vivid. 

The cold continues, so we stayed put today.  It will be even colder tomorrow so I suspect we will do the same. 

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 6, 2010

Better Day

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , |
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The hallucinations seemed to have backed off a little today.  Mary Ann went to her Bible Study this morning after a break of about a month.  That seemed to help her alertness, both the anticipation and the class itself. 

I was surprised at how many ladies were at the class.  At 68 Mary Ann is among the youngest in the group.  The cold and snow did not deter them.  I made the observation that many who were there had spouses at home with whom they had been trapped for many days.  Apparently, they needed a break. 

I used the time Mary Ann was at Bible Study to head to the Wild Bird House to pick up a couple of things and talk with the owners.  There were a couple of other customers who joined in the conversation, especially about the Eagles I had seen Sunday morning.  One of the customers had been to the same area and seen forty of them.  The time at the Bird store often turns into a bit of a respite.

Mary Ann suggested again today that we eat at the library.  Since this was the second day in a row that she suggested it, I realized that it was more about the lunch than the library.  We had gone to the library yesterday.  She wanted the five cheese Quiche they serve there.  She wolfed it down with just a little help cutting some of it into smaller pieces. 

She napped for an hour or so when we returned home, but got up to join me in talking with a member of the congregation from which I retired who is one of the best interior design folks I know.  Stacey talked with us about window coverings for the sun room addition when that project is done in February.  Mary Ann is not so interested in the project as am I, but she will certainly enjoy it when it is done.  We also talked about a couple of lesser projects that might be thrown into them mix.  I am just grateful to have something concrete and positive to focus on during these days we are pretty well trapped in the house. 

This evening has been okay.  She seems pretty restless again.  I am especially tired this evening, so I will bring this to a close and try to get some rest.

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.

 

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