February 27, 2010

Neurologist’s Office Called

Posted by PeterT under Daily Challenges, Family, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , |
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The fax is working!  It seems to be a great way to maximize the quality of the communication with the doctor.  Even though Mary Ann’s appt. is not until Monday, the Neurologist, Dr. Pahwa, has read the fax.  Through his Assistant, Stepanie, he contacted us by phone with a couple of things to think about before Monday. 

The first is that we think about whether or not we will want a referral to a Psychiatrist to deal with the decisions about what meds will serve best in dealing with the hallucinations.  I will, of course, ask for a referral to someone who knows Parkinson’s Disease Dementia and Lewy Body Dementia and what differentiates it from Alzheimer’s Dementia.  It needs to be someone with a large enough patient base of those with Parkinson’s Disease Dementia to be able to speak from experience as well as from book learn’n.

The second suggestion was to think about a referral to a Hospice program.   Medicare and many other insurer’s require a prognosis of six months or less.  I have not yet phoned a Hospice program to be sure what their requirements are, but the marketing materials often talk about a Palliative program that is a longer term intervention that provides a transition to the full Hospice care.  

Having been a Pastor for forty years, I have interacted with Hospice and many who have used it.  The reactions have been almost unanimously positive.  Many in the online Caregiver Spouses group have used Hospice.  Most in that group have had positive experiences. 

Whatever insurance and Medicare do or do not require, there is an expectation that the person being enrolled will not be resuscitated if they experience a cardiac arrest.  There is the rub.  I am not sure that Mary Ann and I are ready for that.  Four months ago, I doubt I would have seriously considered it.  Now, as much as she has declined in the past few months, I am willing at least to consider it.  I am not sure Mary Ann would be willing to accept a DNR order.   Actually, not long ago, our Daughter-in-Law had relayed a suggestion to us from a friend who had read this blog.  That suggestion was to check into hospice.  At that time I started thinking again about the DNR issue.  Mary Ann has declined considerably since that suggestion and its consideration. 

This Wednesday evening, our Daughter, Lisa, will arrive from Louisville, KY, to stay with her Mom for three days, while I have three days of respite at a Center for Spiritual Renewal in a beautiful rural location in north-central Oklahoma. 

In talking with Lisa this evening about the Hospice suggestion, she admitted that it was something she was intending to bring up during her visit.  She has been an Administrator at a very large CCRC, mult-layered complex for older adults.  She supervised the construction and staffing of a dementia building there.  She has also served on the Staff of a Hospice program in South Carolina, working with Volunteers. 

My hope is that our Son, Micah can come from Kansas City so that we can all talk about the matter of Hospice and the DNR that will be required if we choose to enroll MaryAnn.   Our Daughter, Lisa, and our Son, Micah have been a tremendous support.  I respect their ability to process the options with wisdom and rational thought laced with love and concern for both Mary Ann and me.  

Last night was another difficult one.  She was up for a number of times, not as many as some nights, but at least six or eight times.  There were dreams to be dealt with.  She needed to get up very early again, but this time a little single serving applesauce won us another hour or so of sleep. 

One of the times, around 6am, I heard her and awoke to see her standing by the bed.  I rushed over to see what she needed.  I asked if she needed to use the commode.  She seemed to say no, but then talked very fast with slurred words that were unintelligible to me.  She did that a second time.  I tried to manipulate her to sitting back down on the bed. 

It was not until the moment I reached around and got her moving into the sitting position that I realized that she had pulled down the pj’s and disposable and there was soft stool to be dealt with (sorry!).  There followed moving her quickly to the commode, changing clothes and rinsing out bedding so that it could be washed. 

At that moment I started thinking about how to title this post in a way that would change yesterday’s title “Difficult Day” to whatever comes after that that would indicate the next level of difficulty. 

Gratefully, the day improved some.  Actually, Mary Ann had a pretty good day.  I was glad for that since friend Jeanne had visited last week and Mary Ann slept almost entirely through the time she was here with Mary Ann.  Jeanne had a good part of the day able to interact with Mary Ann today. 

One odd moment came when I returned from some errands to find Jeanne very excited about the fact that our Daughter, Lisa was, according to Mary Ann, pregnant.  Mary Ann was convinced that I had told her Lisa was pregnant.  She, of course is not pregnant.  The fact that there simply are no boundaries between dreams and reality for Mary Ann creates some very interesting and sometimes bizarre results. 

Mary Ann is still in hallucination mode, but it has been a little more manageable today.  She did nap for a time this afternoon.  She ate very little supper and was not interested in my help.  She did not even eat the ice cream treat from Baskin & Robbins.  That actually is distressing since I have counted on at least being able to get some calories in by giving her ice cream.   Mary Ann’s recent weight loss seemed to Lisa  be especially relevant to the discussion Hospice Discussion.

Mary Ann is in bed now, and has not so far needed my intervention.  That has no bearing on how the rest of the night will go, but it is allowing me to write this post with fewer interruptions.   Here is hoping for a few hours of uninterrupted sleep tonight.

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.

 

February 26, 2010

Difficult Day

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This was one of the difficult days in the cycle we are in.  As much as I want her to be present with me, I was grateful when she took a couple of naps.  I don’t really know how to explain how difficult it is when Mary Ann is weaving hallucinations/delusions/dreams with moments that seem lucid, at least on the surface.

This mode demands full and constant attention.  Since she can’t differentiate what is real from what is not real, I am expected to deal with things that are not there.  Every task demanding my participation is multiplied exponentially in difficulty.

Of course she started trying to get up between 5am and 6am.  Then she was in the intense sort of mode that has a bit of an adversarial tone.  On days like today, she may be mobile on her own one minute and then weak and confused with her eyes shut the next moment.  When she is in that mode she often can’t connect with the simplest things.  If I ask her to sit down to put her pants on, she may stand up.  She may think we are in the bathroom when we are in the bedroom.

Eating is a nightmare.  When she will allow me to help, she often moves her hands in the way of the food as if she has food in her hands, or put her head down in a way that won’t allow me to put the food in.  She tried to drink the chips from the little pyrex dish, then she tried using a fork on the chips.

In this mode she will often not answer a question or say a word that doesn’t fit, then get angry with me for asking her again.  Sometimes she will say no to a food, but eat it when I put it to her mouth.

It is almost impossible to find out what she wants or where she wants to be.  At one point, she wanted to write a thank you note to a fiance’ from fifty years ago whom she decided had come by to visit.  Another time she just said she wanted her chip autographed.  I said back to her those words, and she confirmed that is what she said.  I, of course, have no idea what that was about.

It was a difficult day also because I find it physically very taxing to lift, move, twist her into the transfer chair or the chair at table when her eyes are closed and she has no spatial awareness to help.  Constantly getting her into and out of bed, turning her from facing one side to facing the other, demands physical strength that is right at my limit.  So much of the time in days like today, she is minimally helpful in that moving.

I tried to nap this morning during her first nap, but it was a restless one for her, so I needed to be up, helping.  Very soon she was up again.  Finally, this afternoon, I was able to rest in bed for about an hour while she was napping more soundly.

She has been incontinent in bowel activity and having bouts of mild diarrhea.  The tasks that are associated with that problem have been increasing and were included in today’s struggles.

I am disappointed in myself that it takes so little time when she is in this sort of mode for me to feel as if I am at the limit of my capacity to cope.  It would seem as if I should recoup when she has the sleeping days or a good day, and then be able to keep things in perspective, dealing with great patience on the bad days.

What seems to happen instead is that as soon as there are even signs that one of these especially frustrating times is coming, the dread emerges.  When the day comes, of course, it is after a challenging night.  With the difficult day comes the awareness that this is what is likely to be the norm more and more as the days and weeks and months and years go by.  As much of a struggle as today has been, it is only a taste of what is likely to be in store, judging from the experience of others.

I understand that the difficulties today are just for today.  Tomorrow may be better or worse, but that will be for tomorrow.  Were I perfectly rational and dispassionate, I would be able to take each moment as it comes without feeling the weight of past struggles and ones yet to come.  I am not perfectly rational and dispassionate.  I am alive, able to feel the frustration and helplessness and sadness to the core of my being.  With that comes the capacity to experience the full range of what it means to be alive, feelings of joy and exhilaration.  I guess the trick is to retain the capacity to experience fully the extremes that come with truly being alive without getting lost in one or the other.

Mary Ann’s friend, Jeanne, phoned today and will come tomorrow for part of the day to be with Mary Ann.  She came a few days ago to spend time with Mary Ann while I met with a friend, but Mary Ann slept the entire time Jeanne was here. Tomorrow’s visit will give me a chance to get the van serviced.  I was having difficulty figuring out how to get that work done given Mary Ann’s current condition.

Needless to say I am hoping for a better night and a better day tomorrow.  I can hope.

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.

 

February 8, 2010

Blood Pressure Refuses to Budge

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This is the person whose Autonomic Nervous System has not been able to maintain a consistent level of blood pressure for the last few years.  It has vacillated up and down and down and up again.  Now the pressure gauge in her body seems to be stuck on high.

After consistently high blood pressure readings yesterday (see last night’s post), this morning at 2am I decided to take her blood pressure.  We spent a couple of hours up most of the time between 1am and 3am.  At 2am it was 200/105.  I decided to take a reading this morning when she first got up so that I could decide whether or not to give her the morning dose of Midodrine.  The Midodine raises her blood pressure to keep her from fainting from the Orthostatic Hypotension — sudden drop in blood pressure when standing, resulting in fainting, what the doctors call syncope.

Her blood pressure reading at 8:45am was 220/120.  Needless to say, I chose not to give her this morning’s dose of Midodrine.  I will keep track of her blood pressure and phone the Cardiologist tomorrow if it is still stuck at such a high level.  Actually, I will call no matter what to report this long stretch of high BP and ask if there is something that would be safe for me to give her to lower it when it is this high.  I also need to try to take her BP when she is standing to see if it lowers then or remains high.  At the Cardiologist’s office last Thursday, her BP was consistently measuring higher than yesterday and today’s numbers here at home even when we stood her up and ARNP Angela measured it.

Last night was not an easy one at least for part of the night.  I went to bed very early for me.  By around midnight or a little later, she started getting up, disturbed by the people.  At one point she wanted to get up and out of bed for a while to get rid of the people in her head.  I was encouraged by the way she said that, realizing (or saying for my benefit) that they were in her head, not actually in the house.

I reacted differently from the past when I have gotten irritated and insistent with her.  I encouraged her and helped her lie down, reminding her that staying awake would make them worse instead of better.  Each time she lay down, I returned to my bed but stayed awake, listening intently to her.  Whenever I heard her mumbling or moving around, I asked if I could help.  In some cases I went over at talked with her a bit.  At one point when I was in bed, she asked what the man was doing in my bed, meaning me.  I reminded her who I was.  It was odd that she seemed to be talking to me but at the same time about me as if I was someone else.  I assume it is a version of the Capgras Delusion I have talked about in earlier posts — the perception that a person has been substituted for another (as in the body snatcher movies).

I stayed awake most of the time for about an hour and a half as we interacted off and on.  Then she settled and slept through until morning, other than the usual commode trips.

I got up earlier than usual this morning so that I could get ready for going to the 11am worship service.  When Mary Ann got up, she asked what we were doing today.  I helped her tune in to the fact that it was Sunday, and that I was planning for us to go to the 11am service, then out to eat at the Brick Oven, and watch the Super Bowl later in the day.

When eating the yogurt, drinking juice and taking pills, she was in eyes-tightly-shut mode.  I needed to feed her again this morning.  When I offered the usual options for cereal, instead of picking one, she said she was tired and wanted to lie down.  She was pretty unstable from the time she got out of bed.

I did make a point of weighing her to see if she is retaining fluid.  Her feet have been swollen the last couple of days, including this morning. Her weight was almost exactly the same as it had been the last time she weighed herself on that scale.  I will continue to monitor that as long as her feet remain swollen.

After she made a trip to the bathroom, when I asked her if she still wanted to lie down, she said her stomach hurt and, yes, she wanted to lie down.  She was concerned about lying down, knowing that I wanted to go to church.  Those words and actions, stomach hurting and wanting to lie down, usually asssociate with intestinal activity at some point. I knew that major intestinal activity would be far easier to deal with here at home than at church.  There would have been no way to manipulate her into going at that point, nor would it have made sense to try given those circumstances.  It is now well past the time church would have started and she is still sleeping.  I am sitting here at the computer with my suit pants on.  I guess it is time to change into stay at home clothes.

She slept for about four hours.  I should have gotten her up at some point to go to the bathroom.  Even though she had a night time disposable, it leaked. The bedding needed changing anyway.  The PJ’s and bedding are in the washer. I waited a little longer than I should have to give her a pill and get her up since I had ended up sitting down and reading, listening to the waterfall and birds in the back yard through the speaker made to bring outdoor sounds in.  Last night’s time up with Mary Ann caught up with me and I wanted to have some extra time just to rest.  She called for me soon after the time her med timer had gone off.

I took her blood pressure when she got up.  The reading was 165/105, not good but better than earlier in the day.  I cooked a bratwurst at her request.  Bratwurst and chips sounds like good Super Bowl Sunday food.  She handled the bite-sized slices of bratwurst on her own, as well as the dish of ice cream from the supply we bought at the store yesterday.

After lunch I asked her if she was willing to let me check her blood pressure while she was standing.  It was considerably lower, 130/80.  It was a little harder to hear clearly through the stethoscope since she was moving some.  It may have been a little higher than that, but certainly not lower.  When she has had problems with fainting, her BP has been very much lower than that when standing, and sometimes sitting.  Both numbers have been under a hundred.  The time she took the Tilt Table test at the hospital to verify that she had Orthostatic Hypotension, as soon as the table moved her from a lying position to 70% of a standing position, her BP dropped from a high reading, to 50/30.  A few minutes later she fainted.  I will keep checking her BP, but I would rather have a little fainting than allow it to stay as high as it has been the last few days.

A few minutes ago she showed me her glasses.  The ear piece on one side had come out of the hinge completely.  It will need to be reglued — hopefully possible.  We will take it in tomorrow.  I can only guess that spending so much time with her head down on the dining room table or the little table in front of her chair has resulted in loosening that ear piece.  I finally found an old pair of glasses she could use in the mean time.  It was almost comical in a sad sort of way that I found two old pairs that were not useable since she had fallen on them, in each case scratching one of the lenses so that it is completely useless. One of those falls took her to the Emergency Room with a giant hematoma on her forehead the size of her fist.

At suppertime Mary Ann’s blood pressure measured 165/95, again, too high, but not as high as this morning.  She struggled to eat supper and refused to allow me to help.  The last time I offered and she refused, I asked her why she wouldn’t let me help.  She was completely shut down, her face almost in the plate, getting nothing into her mouth.  Her answer was, “It is all I have left.”

She went to bed at about 7pm, watched the game from there, took her pills.  It was not long after that that she needed a snack — no surprise since she had eaten very little at supper.  She seems to be sleeping at the moment.  That, of course, can change at any 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.

 

February 4, 2010

Too Good to be True

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Three nights are better than none.  Mary Ann was up once every two hours last night.  That is good measured by past standards, but disappointing in light of the hopes raised by three nights of sleep with only a couple of interruptions each night.  She was up and ready to go at 6:30am this morning.

There were a couple of Volunteers this morning.  Two of the three other members of the Wednesday morning group could not make it this morning, so Paul (the other of the three) and I met for coffee at PT’s (of course).  Then I spent some time sitting in the car listening to a remarkable vocal ensemble called Anuna (performed in Riverdance).  I checked out a particularly meaningful Bible Passage.  Then I walked a little over a mile at Cedarcrest.

When I returned, Mary Ann was napping.  After a while, she ate the leftover Seafood Tortellini from yesterday’s lunch.  While she was eating she said “where did you get that” while looking over my shoulder.  I asked her who she was talking with.  She said it was her Mother (who has been dead for many years) who was holding a doorknob in her hand.

There were some intestinal blowouts that suggested the onset of serious diarrhea, but they subsided after a while.  I will spare the details of those challenges.

As the day wore on, there were a two or three more quick comments that seemed to reflect the presence of a hallucinations.  She spent much of the afternoon with her head on the table.  I gave her the stuffed frog, on which she laid her head.

During that time a friend came over to talk with me about a project on helping people make meaningful plans for their own or a family member’s funeral.  Having done countless funerals over the years, I have seen what helps and what does not help when going through such a time.  It felt good to be able to talk about some of those experiences and discoveries that came from them.  It is a nice feeling still to have something to offer.

Mary Ann spent the rest of the afternoon with her head down in her lap, on the stuffed frog.  She manage to eat a little, very little for supper.  With the new Baskin and Robbins now open, I put the Lifeline button next to her head as she lay it on the table after supper, and headed off to get ice cream for her so that she would have enough in her stomach to last the night.  Yes, of course I wanted ice cream for myself — did you even need to ask?

I decided to write a request on Facebook that anyone who can do so, get ice cream at that B&R and tell them Pastor Pete sent them.  When I stop back in a few days, I will be curious to find out if anyone actually did so.  It can’t hurt to have the owners of the B&R as friends!

I have to say that it has been very disappointing to see an end come to the good days and nights so soon.  I was hoping we would get weeks or months rather than just days out of the new dosage of Seroquel.  I was not at the monitor for a bit a few moments ago and heard the telltale thump.  She was on the floor next to the bed but not hurt.  When I helped her to the commode, she suddenly got an alarmed look on her face and told me not to step on the baby.

Fifteen minutes later she was up again on the side of the bed.  I went in to see what she needed.  She said, “What are you doing here at school.”  When I asked what school we were at, she said it was Granddaughter Ashlyn’s school.  Then she suggested that she get dressed to help her get oriented.  I explained to her that it was 11:10pm, and everyone else is in bed, so it would not help her get oriented to get dressed.  She decided to use the commode, even though she used it fifteen minutes earlier.  She is lying down in bed again, but I don’t expect it to be for long.

She made it almost an hour.  This time she was on a ride in the car looking for a house, looking at a parsonage.  There were some banshee eyes (not scary to her) that seemed to be like the 3-D glasses from the yesterday’s viewing of Avatar.  Didn’t I have to pick up the kids.  The raccoon was there (first she called it a porcupine).  She said that this looked like her bedroom.  I showed her the quilt on the wall again to assure her that it actually was our bedroom.  At least so far tonight, she has not been as agitated as she was last week.  Unfortunately, it is likely that if she gets less sleep than she needs in the next few nights, that intensity will return.

More than one of us in the online group have compared the rapid twists and turns and reversals of fortune that come with this sort of dementia to torture.  Each of us has our sources of strength and wisdom.  In my world view, the Biblical literature is  the place to which I go to find the framework of reality as I understand it, to locate meaning in the middle of things beyond understanding.  This morning as I sat in the car at the lot at Cedarcrest, my mind went to a passage written by a fellow named Paul, who had by that time gone through some terrible struggles.  It reads this way:

“But we have this treasure in clay jars, so that it may be made clear that this extraordinary power belongs to God and does not come from us. 8We are afflicted in every way, but not crushed; perplexed, but not driven to despair; 9persecuted, but not forsaken; struck down, but not destroyed; 10always carrying in the body the death of Jesus, so that the life of Jesus may also be made visible in our bodies. 11For while we live, we are always being given up to death for Jesus’ sake, so that the life of Jesus may be made visible in our mortal flesh. 12So death is at work in us, but life in you.” [2 Corinthians 4:7-12 NRSV]

Quoting Scriptures is not intended to suggest that these posts are only for those who share my theology or any theology for that matter.  I am simply reflecting the sources to which I go for strength.  When hopes and expectations get crushed, it is easy to feel hopeless.  It helps to hear from others who have been there, like Paul, a way to perceive reality that allows survival. It is the reality to which Paul refers that provides the ground on which this roller coaster we are riding rests.

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 28, 2010

Hallucinations Continue to Increase

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , |
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She asked, “Do you need some help?”  She was at the table for pills and breakfast this morning (6:15am) looking across the table at someone or something.  I asked her who she was talking to. She answered, “Santa Claus.”  She was serious.

Then she asked if I had talked with our Daughter, Lisa, last night.  She heard Lisa saying, “Help me.”  Lisa, of course, lives in Kentucky.  She saw Granddaughter Ashlyn, who also lives in Kentucky, on the other side of the table doing something, she wasn’t clear what. I am not sure I convinced her that Lisa and the girls were not here in the house.

I had gone to bed extra early last night in hopes of catching up on some sleep, but it was another difficult night.  She was up a number of times. Twice (in the 3am to 5am territory) she got up for some reason and ended up on the floor next to her bed.  She was not hurt at all.  I was having some distressing back/rib pain that made it unrealistic for me to try to lift her.   I pulled over the walker and tried to position it and hold it down so that she could very slowly and with great difficulty pull herself up enough each time to get into a sitting position on the bed.

The Bath Aide, Zandra, came to give her a shower and wash her hair later in the morning.  Zandra commented that it was the first time Mary Ann had seemed to be almost completely unresponsive to her.  She also reported that Mary Ann had been handling the thin gold chains she often thinks she has in her hands.  When we talked about the day at supper time tonight, Mary Ann said she could not remember Zandra being here at all today.

She certainly had no memory of the rest of the day since she went down for a nap around 10am or 10:15am,and did not get up until 4:50pm.  She only ate a small container of yogurt and a muffin for supper.  She watched some television and we moved into a time of intestinal activity that included a number of trips demanding my help in obtaining results concluding with some unaided production.  Hopefully, she will feel better for a while.  She has settled on to the bed at about 7pm and is napping again.  I don’t know if she will get up for a while later or l just get up to take her bedtime pills at 8:30pm, change for bed and then lie back down for the night. The odds of Mary Ann sleeping much tonight are slim to none.

During the day there were two Volunteers, Rebecca and Clarene, with Mary Ann at different time, one right after the other.  While I had the benefit of the time away, Mary Ann and each of the Volunteers had no time to enjoy one other’s company.  She slept through the entire time each of them was there.

The time today provided me a chance to lunch with a good friend.  It was helpful to be able to talk openly about lots of the dynamics in our lives.  Later, there was  long conversation over coffee with another good friend.  It was especially helpful to have those times in safe settings with trusted friends to process the more challenging place to which we have come in our household at this point in our journey.

This afternoon the new batch of Seroquel arrived.  Tonight I will increase the dosage from 100mg to 125mg.  I will continue that for three days, then move to 150mg.  To be honest, I don’t actually expect it to make any difference in the hallucinations.  I could be wrong about that, and I would like very much to be wrong about that.  When we tried increasing to 125 last fall for a couple of weeks, it did not seem to make any difference at all.  On the hopeful side, it has often been our experience that a medication had virtually no effect until it reached the therapeutic level.  Maybe 150mg will take Mary Ann across a threshold that 125mg did not yet breach.

I am concluding this post earlier in the evening than usual, hoping, not expecting, but hoping for a few hours of uninterrupted 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.

 

January 24, 2010

Couch Potato Day

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

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

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

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

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

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

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

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

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

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

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

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

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

 

January 10, 2010

She Likes It!!!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
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Have aliens come and stolen my Mary Ann, replacing her with with a look alike imposter???  She ate the whole thing!  Mary Ann ate the chicken salad that I made from scratch with my own culinary-challenged hands. 

On three or four different occasions in the last few days, I put a couple of spoonfuls of that home-made chicken salad on her plate.  It is shredded chicken (from the freezer, prepared by our Daughter Lisa when she was here), grapes, pecans, celery, Miracle Whip, some fresh dill and a little onion powder mixed together.   She ate every bit of it every time I put it on her plate.  Potato chips and Pepsi rounded out the meal each time. 

If that is not enough, when I listed the options for supper tonight, she chose the beef, potatoes and carrots I had cooked in the crock pot the other day — and she ate it!!!  Now do you understand why I have posited the alien imposter theory?

On another matter, last night I asked three questions of the people in the online Caregiver Spouses of those with Lewy Body Dementia: 

The first question was about Mary Ann’s hair.  It seemed as if there was more hair than usual coming out on the brush when washing and combing her hair recently.  I asked if others’ Loved Ones had experienced hair loss.  Some Loved Ones have lost their hair, with no explanation from their doctors.  Group members mentioned the dry air at this time of the year, stress, too much washing, thyroid problems, and Discoid Lupus Erythematosus (DLE).  Since the problem seems to have subsided, I suspect it was just a natural occurance with no long term implications.  Needless to say, I will pursue it if there is more evidence warranting it.   Mary Ann’s hair is thick and dark with some gray mixed in.  She routinely gets compliments on how nice it looks. 

The second question had to do with disinfecting items in need of washing.  At the risk of being indelicate (I have been painfully explicit many times before), when there is need for cleaning matter (euphemism) off clothing before putting it in with other wash, I use Clorox in the water in a downstair sink we had put in for such things.  The last time I used the Clorox to disinfect some clothing, it was new red plaid pajama bottoms from LLBean.  I moved very quickly in the task of putting the pj bottoms in the water, swishing them around to get all the matter off, then rinsing and squeezing a number of times to get the Clorox water out of them.  Needless to say, they magically turned from red plaid to pink plaid pajama bottoms.  The suggestions from the group included OxiClean and Vinegar.  After some checking, it appears that OxiClean may and Vinegar certainly does disinfect pretty well.  I will probably substitute a 5% vinegar solution for the Clorox water when this need arises again. 

The third question had to do with disposable underwear.  The latest marketing tool is to replace unisex disposables with disposables specifically for men and for women.  The problem is that the women’s are made to be more comfortable for daytime use by enlarging the leg holes.  The net result is that  while they may be fine when up and walking, they leak badly if there happens to be a daytime nap.  Daytime naps are routine for many who need disposables.  I asked the group for suggestions of disposables that work for them.  I have had no responses to that one yet.  I suspect one reason is that the vast majority of those in the online group are women caring for their husbands.  The needs in this area are gender specific. 

One other note concerns a member of the congregation that I served before retiring.  He has had Parkinson’s longer than Mary Ann, over thirty years.  He fell and ended up in the hospital.  He has a strep infection that is interfereing with the healing of the arm on which the skin was broken when he fell.  In Emailing back and forth with his Daughter, I noted that people in her Dad’s and Mary Ann’s circumstances live in a narrow margin of functionality.  This fall and infection are taking Norm to the Rehab Unit of a local nursing home for a while.  He has been declining for the past few weeks.  Apparently, the treatment for the infection is helping him regain much of what he has lost in the last six months.   

In a sense, we are living on the edge.  In reality, all of us are living on the edge.  Anything can happen at any time.  Those who are in circumstances like Norm’s and Mary Ann’s are just more aware of it.  We can choose to live in terror of what might happen, or we can just choose to live. 

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 3, 2010

Quick Changes in Alertness

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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Last night Mary Ann contiued her confusion.  While lying in bed, she asked about the group of people somewhere behind me or in her view in the living room — was it the Thursday group.  She asked if it was time to get up a couple of times, once at 9:20pm and again at 10:30pm.  She said something explaining what she was thinking, something that just did not compute, something about her relationship in location to others.   Once she got to sleep, she slept pretty soundly.

This morning, when she got up and was eating breakfast, I was looking through the Christmas card list.  I mentioned one couple at one point and she reminded me where they lived and that their daughter had twins.  These are folks with whom we have not interacted in decades, whom we remember mostly just at Christmas Card time.  I did not remember about the twins since it happened a year or so ago (I think).  Mary Ann asked about a former parishioner, whether or not she had died.  About a month ago she had gone into a Hospice House here, but had since stabilized and gone back to her Assisted Living apartment.  That Mary Ann remembered her situation was a surprise.  Mary Ann’s Bible Study about three weeks ago may have talked about it.   She said she wanted to go out to lunch today.   When I asked where we should go, she immediately said, “the Irish place.”   What a contrast to yesterday!  The place is called O’Dooley’s.  She always orders bangers and mash there.  Since she has never been an adventurous eater, it surprised me the first time she ordered it.  It actually is pretty straight forward, mild sausages and cheesy mashed potatoes. 

After an hour or so of alertness, she fell (while I was taking a shower), but as usual was not hurt at all.  After I finished showering, I got her back in the transfer chair — she fainted.  It was apparent that there had been some intestinal activity during or after the fall.  She became tired and asked to lie down.  There was some more intestinal activity and some major fainting on the stool.  She is now napping.  This was a particularly speedy trip down, up and down again on this roller coaster ride.

After her nap, we did go out to O’Dooley’s.  She had the Bangers and Mash.  I enjoyed the Portobella Mushroom sandwich with home made potato chips with a very tasty cheese dip and a Black and Tan (Guinness Stout and Bass Ale).   And I wonder why I am 25 pounds overweight.  When exactly is it that those New Year’s Resolutions go into effect?

What was sort of entertaining about the time at the restaurant was that when I asked the waitress if we had met, since she looked so familiar, she reminded me that during the five years she worked at G’s Frozen Yogurt she had often waited on us.  She remembered our usual order of two Turtle Sundaes, one in a larger cup so that Mary Ann could handle it better.  More reason for the extra twenty-five pounds.  It is still not fair that Mary Ann eats those good things and refuses to gain a pound.  That she brought half of her meal home and they didn’t even have to wash my plate since I licked it clean, might have something to do with that apparent lack of fairness. 

In addition to knowing the waitress, a young man from the kitchen caught me.  I recognized him as a former member of the parish I served before retiring.  He came over to the table, and we talked for quite a while, mostly about his future plans.  Both of the two were within a few years of high school.  It always pleases me when young people take the time to talk to us Geezers.  He also made a point of acknowledging Mary Ann by name as he left to get back to the kitchen.  That was a very thoughtful gesture, since so often someone in a wheelchair gets ignored.  Now that I think about it, I guess I am complicit in that problem, since I did not make a point of introducing him to Mary Ann. 

We rented some movies and watched one this afternoon.  After the Law and Order Marathon yesterday, I was grateful that we had been given a gift card at the local Family Video.  The movie was not very entertaining to us.  We were grateful when it was over.  Mary Ann was tracking well enough to recognize that she wasn’t impressed with the movie (“He’s Just Not That Into You”).  A customer in the video store had recommended it. 

Mary Ann went to bed very early again tonight.  I was in the living room when I heard the telltale thump of her falling to the floor.  She did not hurt herself, but she was pretty confused and seemed unable to come out with any words that made sense.  She was willing to lie back down and has been sleeping since.  That was about an hour ago.  By the way, she has had a stroke in the past.  This fall seemed like a pretty ordinary one.  The confusion afterward did not include the kind of speech pattern that is a telltale sign of a stroke.  She had no weakness on one side of her body.  Of course there are no guarantees since the range of some of her reactions often overlaps stroke symptoms.  We live in a narrow range of functionality.  There is a vulnerabilty we have just learned to live with.  Most folks who have lived very long are not unfamiliar with that vulnerability.

One especially pleasant phone call was one from Mary, who schedules Mary Ann’s Volunteers.  There are already ten slots filled for January, beginning tomorrow morning.  Those slots vary from two to three hours in length.  The weather may interfere with those visits, but it is a help to both Mary Ann and me that they are scheduled.  We have not had much time away from one another in the past week or so due to the blizzard and its aftermath. 

The ride the last couple of days has taken us up and down with rapid changes between the up and the down.  We continue to hang on for dear life during the down times and celebrate the up times. 

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 14, 2009

Christmas Preparations

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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I just forgot!  I actually forgot about the Christmas tree.  I am a Pastor, how could that happen?  It is not that I forgot about Christmas.  I just forgot about the tree business.

Up until yesterday, the thought had not crossed my mind that there was something missing in our plans for Christmas.  We have been shopping.  Plans are made for the family gathering and celebrating Christmas on Sunday, the 20th, since that is really the only convenient time for our crew to get together.  (I have absolutely no idea what we will eat that day.)

I have even done the massive decorating of the outside of the house.  The decorations are unbelievably dramatic and terribly time-consuming to put up.  I will give you the details of how the decorating of the outside of our house is done.  First I open the garage door.  Then I walk over to the shelves in the garage and take down a box.  From that box I retrieve two artificial wreaths, each with a red bow on the bottom.  I take the wreaths outside and gently place one around each of the sconces on either side of the garage door.  What an undertaking!!! I am exhausted just thinking about it.

I feel like Pastor Scrooge when I drive through the neighborhoods to look at all the outdoor lights decorating houses and yards and then drive up to our house afterward.  Mary Ann would have loved having outdoor lights.  I just couldn’t bring myself to do it.  It is not some sort of theological statement about the real meaning of Christmas versus the decorations.  I am fine with people doing whatever brings them joy as they celebrate the holiday season.

I suspect that part of the reason I have not gotten into much in the way of elaborate Christmas Decorations is that before I retired, this was pretty much the single most demanding time of the year.  Admittedly, Holy Week and Easter are up there with it.  I was so focused on work, and so overwhelmed with all the preparations that I could not muster the motivation to carve out time for decorating the house.  Some of it is that I am far too easily frustrated when trying to take on new tasks and figure out what to do and how to do it.  I needed no added stress at such a busy time.

I don’t really know what other pastors do.  I suspect we are as varied as the general population in the area of decorating the house for the holidays.

We did always put up a tree and do some indoor decorating.  Mary Ann saw to that.  She did not say anything about the tree this year, and I just didn’t think of it.  Now in case someone reading this is getting depressed for us about the tree and indoor decorations.  Now that I remembered, the tree is up.  It has no lights or decorations yet, but it is up.  There are a few things on the mantle.

I have to admit that the motivation for getting the tree up is the fact that our Children and Grandchildren will be here next Sunday.  I suspect they would all be bummed if there were no tree.  Having talked with other folks our age and older, it seems that I am not alone in the lack of interest in putting up the tree.  Mary Ann, on the other hand, would probably not tolerate going through the Christmas season with no tree.  She has always loved the lights and ornaments.  Many years ago we put tinsel on the tree each year.  We had the classic difference in technique.  I would meticulously lay each strand of tinsel over the branches, and Mary Ann would toss handfuls of tinsel on to the tree.  It is a marvel we will be married 44years on Friday.

Mary Ann’s day today included a lot of sleep.  We both slept in.  It was about 10am before we woke (other than the commode trips). I got her dressed, gave her pills and breakfast.  There was an urgent trip to the bathroom, including a couple of substantial fainting spells.  Then when I took her out to the Living Room, she asked to turn around and go back to the bedroom to lie down.  She napped for a couple of hours.

This afternoon after she got up and ate a sandwich, I got the tree up from downstairs.  Then all of a sudden, she got up and headed off.  When I asked where she was going, she said to the kitchen to make something.  I became frustrated with the fact that I was mid stream in getting the tree up, and her actions were demanding that I stop, leave the tree parts in the box on the Living Room floor and help her in the kitchen. I insisted that she give me time at least to put the tree together and get the box out of the Living Room.  I had already moved the furniture to accommodate the tree in our small town home.

As soon as she said that she was going to go to the kitchen to make something, I knew what it was.  The last time we were at the grocery, Mary Ann insisted on getting some of what we have come to call “Lisa’s Cereal.”  In fact we phoned Daughter Lisa while standing in the cereal aisle at the store.  We disagreed on what cereal it was.  We bought two boxes of Quaker Oats Squares.  There is a wonderful pecan crunch made with the cereal, pecans, brown sugar, butter, Karo syrup, vanilla and baking soda.

After the tree was put together, we headed into the kitchen and made the pecan crunch.  Mary Ann sat at the little ice cream table that resides in the kitchen eating area, while I followed the recipe, without ad libbing, and prepared that decadent and very tasty snack.

After church tonight, we picked up some food that Mary had prepared for us, Lavonna’s beans, a couple of containers of spaghetti, and Mary Ann’s favorite green Jello with cool whip and cottage cheese.

Mary Ann is in bed, but the signs are that this will not be a good night for sleep.  I hope I am wrong about that.

 

December 13, 2009

Granddaughter Shines!

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
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She watched the director, knew the music, sang with her mouth open wide just as she should, and brought some joy to her Grandparents (and, of course, her parents).  This Grandpa loved every minute, since singing was in the center of my life during most of my first two decades of life, and has remained a love until now.

We drove a little over an hour to the church at which Chloe’s choir performed.  Her other Grandparents made a trip more than twice that length to come to the concert.  The choir is sponsored by the University of Missouri, Kansas City (UMKC). Auditions are required to be able to sing with the choir.

Then logistics needed to accomplish the day’s activities were not always easy.  Churches try hard to be accessible for the handicapped, but old buildings often will simply not cooperate in the task of becoming welcoming.  We thought it wise to make a bathroom stop before the concert.  There was an accessible bathroom inside the ground floor doors near a handicapped parking spot.  The doors were locked to force the attendees to use a door that would allow entry to the room from the back.

Gratefully, we got the attention of then attendant who let us in and waited while we used the restroom.  The need to change the pad due to incontinence resulted in removing shoes that are difficult to get on and off.  We used an elevator to get to the floor on which the concert would be held.  As a result of the time spent in the bathroom, we barely made it in through a door in the front of the room, the same door through which the choirs entered.  We were directed to the indentation in the pews for wheel chairs, but all the seats around it were filled.  Gratefully, a family offered to split up with Dad moving the pew behind so that I could be right behind Mary Ann.

After the concert, to get to the reception area, we had to return the same way, take the elevator to the lower level, pass through the kitchen, and then arrive at the reception area.

Before the concert, we ate out together.  The handicapped parking spaces were a block from the restuarant.  To get to the booth, we had to go through the serving area.  Booths are always a bit of a challenge.  Ordering was pretty difficult, as it always is, since a compromised executive function of the brain is among the first of the problems to emerge with Parkinson’s Disease Dementia (Lewy Body Dementia).  She really struggled to track and then decide what to order.

Again, getting the food to her mouth, coordinating the straw so that she could drink did not go very well.  Then twice, she just fell to the side. [See an earlier post on leaning to the left.]  After the second time, I moved from sitting in the chair that had been added for me, to sitting right next to her on the booth bench, with my body supporting hers.  When we ate at BoBo’s earlier in the week, she had fallen to the right twice while sitting in the booth.

After the concert we had a nice time with the kids at their house, along with Daughter-in-Law Becky’s parents.  Mary Ann was sitting off to the side a bit since she needs a hard, straight-backed chair to keep from being trapped in the chair, unable to assist when she needs to get up.  I stood near her so that the conversation would include her, even though she said only a few words.

I need to ask the kids to confirm, but today seemed to indicate that Mary Ann has lost ground in the recent past.  I am beginning to accept the possibility that this is just the way it is now — that we have moved to a new normal.

When we left their house, we headed down to see the Plaza Lights.  Kansas City is a beautiful place for the most part.  The Country Club Plaza, built in the 30’s with all the buildings done in Spanish Architecture, is a wonderful spot.  There is a huge fountain on one end.  There are parking garages built with the same architecture.  There are horse drawn carriages, people walking the sidewalks.  There are lots of exclusive stores, most having very expensive merchandise.  The lights outline all the buildings and have been put up from Thanksgiving through Christmas for many decades.

We lived in an area a mile or so south of the Plaza for fifteen years.  Our children grew up there.  It felt wonderful tonight to be driving those same streets that had become so familiar.  I realized how much I miss the feel of a metropolitan area that has people walking about, families, young people, folks out walking their dogs, local ethnic restaurants, curved streets, tall trees everywhere.  I guess we just fell in love with Kansas City during those years there.  As we drove, Mary Ann admitted that she would still like to move back to KC.  There are a number of reasons that pretty much eliminate that option, but this is not the first time she has said that.  One of the reasons moving back is unlilkely is that the house we bought for $22,500 in 1972 was on the market a couple of years ago, listed at $310.000.  What is it they say, “location, location, location.”

All in all, today was a good day.  While there were signs of Mary Ann’s apparent decline, the joy of getting out, hearing Chloe sing, enjoying conversation, and seeing beautiful Christmas lights more than compensated.

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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