February 23, 2010

Awake, Lucid and Fainting

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Sitting in the transfer chair in front of the television, she just fainted.  I took her blood pressure as soon as I could get the cuff on her arm, the stethoscope in my ears and the cuff inflated.  It measured 80/50.  About five minutes later I took it again.  Then it measured 90/60.  Remember the three weeks it measured 220/120 when I took it first thing in the morning?  Check a few posts back.

I started her on a half of a Midodrine pill three times a day.  I got in two doses today.  And so the roller coaster goes up and it goes down.  Today is the best day in the last four (if I am counting correctly) in terms of Mary Ann being awake and lucid.

She got up in time to eat and take pills before Bath Aide Zandra came this morning. While I needed to help her with all that she ate, she had a good quantity of food. She did faint more than once for Zandra as she was trying to give her a shower.

She sat up in the chair for the rest of the morning.  It was the longest she has sat up in the chair in many days.  There has been no evidence of hallucinations today.  She ate reasonably well at lunch, having a big bowl of ice cream for dessert.

After lunch she sat for a while and began slumping over some.  Soon she got up to go in and take a nap.  She slept until supper.  She ate reasonably well (I actually cooked) and had a lemon bar for dessert.

Since Volunteer Twila came for the evening, I was able to get out for a while and bring back for her a couple of scoops of Baskin & Robbins.  She ate that treat right away.  It was not long after that that Twila left and she went to bed.  She has been down for a couple of hours, either watching television or sleeping.

I have finished the fax to the KU Med Center Parkinson’s Clinic Neurologist and intend to send it tomorrow.  As I finished it, I could describe what has become a pattern for the last three weeks: two days and two or three nights with streaming hallucinations any time she is awake;  then two days and two or three nights of sleeping all the time (day and night); then a couple of days and nights in which she sleeps at night and is awake and lucid about half of each of the days.  Then the cycle begins again.  This is the closest we have come to a pattern in a long time.  It is not a wonderful and pleasing pattern, but at least it provides something coherent to communicate to the doctor other than constantly unpredictable changes.

Last night instead of getting to bed early as I had planned, I checked out some of the Taizé music on YouTube.  I followed it with some Russian Orhodox Liturgical Chant, also on YouTube.  That hour or so was very nurturing spiritually.  Since the snow and Mary Ann’s sleeping through the entire day precluded getting to corporate worship, I needed the sabbath rest more than the physical rest.  Tonight for part of the time I found a spot with enough light at PT’s coffee shop and read the book on science and religion called The Mind of God by Paul Davies.  I mentioned it in a prior post on this blog.  The author does not believe in God as do I, but his approach certainly makes it clear that he does not rule out that possibility.  He seems to be arguing for belief, based on the science, even though he does not claim belief.  My faith is nurtured rather than challenged by what I read.

As I have repeated far too many times, this is a particularly difficult time in our journey.  The Spiritual nurture is a key element in sustaining me during this time.  I am grateful for Mary Ann’s strong faith as we journey together.

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 22, 2010

Snowed in and Asleep

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I am beginning this post shortly after 2pm today.  Mary Ann settled into full sleep last night some time between 12am and 1am.  Other than two trips to the commode, she has been sleeping ever since. 

Just a few minutes ago she called my name, I went in and got her on the commode.  I told her about all the snow, she responded appropriately and clearly.  In moments, she was back to being unable to respond.  All she could do was make a grunt.  I tried to talk her into getting dressed.  She was just too non-responsive to manage that. 

I managed to get the Exelon patch changed, but she was not interested in taking her meds.  I don’t think she could have awakened enough to get the meds swallowed.  I reluctantly put her pj pants back on and let her lie back down.  She was having trouble continuing to sit erect on the side of the bed.

As always, I am grateful to have gotten a full night’s sleep.  While I don’t like losing her presence when she is in the daytime sleeping mode, sometimes she is fairly lucid for a while after she has slept off the last bout with streaming hallucinations.

Sooo close!!  Almost made it!  At about 2:30pm I decided to get something to eat.  After I got something heated and started eating I heard her.  By then it was 2:45pm.  I asked if she was ready to get up.  She said she was.  I suggested getting dressed before pills and food but thought better of it when she couldn’t seem to geet her eyes open. 

She drank some apple juice (with Miralax) and took her pills — I put them in her mouth and put the straw to her mouth to take with with the juice as is now the norm.  I fed her a container of yogurt.  Then I started suggesting cereal options or whatever might interest her to eat.  I remembered Mary’s jello (green jello, pineapple, cottage cheese and Cool Whip).   She wanted that and ate a good-sized serving.  It should be helpful since there is protein, calcium, fruit and carbs in it. 

Then I joined her at the table and finished my bowl of beef and noodles.  She asked where “Dad” was.  I think that would be me.  When I asked who she was thought I was and she answered “Mom.”  At that point, I suspect she had connected better and was just being silly — not sure about that. 

Anyway, as soon as we got back to the bedroom to get her dressed — you guessed it.  She needed to lie down again for some more napping.   That happened a little after 3pm.

Mary Ann got up again at about 6:45pm.  There was an odd irrational hope that the fainting issue had just sort of left her.  At the same time, I knew it would return eventually.  Earlier today I worked on re-writing the fax to the Neurologist and had mention dropping the Midodrine until the fainting returns.  I knew it was wishful thinking to expect the fainting to stay away.

Well, it has returned.  She fainted twice while in the bathroom, once on the stool and once when I returned her to the transfer chair.  She fainted again when she decided to stand up while sitting in front of the television.   What an insidious disease this is.  Not every person who is diagnosed with Parkinson’s will have to deal with quite this many symptoms in such severity.  It is the major heart problem combined with this form of dementia that has produced so many debilitating symptoms. 

It was not long before she decided she wanted to go back to bed.  She had said she did not want to eat when she got up this time.  I asked her again, listing lots of things as we were ready for her to get back into bed.  She agreed to go out to the table.  Again, she chose Mary’s jello.  I fed her a large dish of it. 

She is now back in bed.  It is 7:15pm, which means she was only up a half hour.  I am readying myself mentally for a difficult night.  She has slept through days and nights before, but it seems unlikely to me that she will manage to sleep through tonight also.   The most I can do to prepare is to get to bed early enough to increase the odds of getting some sleep even if it is a bad night.  I got a good night’s sleep last night.  That will help.

My day was spent mostly reading posts of those in the online Caregiver Spouses group and the Kansas Birders.  I managed to rewrite the fax to the Neurologist and update it.  I did get outside to shovel off the deck and a path to the birdfeeders.  It was good to get a little exercise and get the birds some food that is accessible in six or so inches of heavy snow.  I am often annoyed on days like this that I still manage to procrastinate on many of the tasks on my list of things needing to be done.  There is in the back of my mind the likelihood that as soon as I get the preparations made for doing whatever it is, Mary Ann will be up and in need.  It is as good a reason as any to put off until tomorrow what could be done today.   (Isn’t that how that saying goes?)

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 19, 2010

Prayer Shawl from Wisconsin Friend

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Facebook is an interesting tool, even for Geezers like me.  Not too long ago we connected with someone our age who went to the same church Mary Ann and I attended.  It is where Mary Ann and I met.  Actually, Mary Ann and I had grown up together in that church.  It was a large enough congregation that we only knew each other’s names since both families were very active in the church. We didn’t really get to know each other personally until the summer after my first year in college.

Judy was a member there.  Her family was also one of the mainstays in the congregation. She knew both Mary Ann and me before we were a couple.  It is through Facebook that Judy and Mary Ann and I connected after some fifty years.  Judy now lives in a small town in Wisconsin.  She is in a leadership position in her parish there.  That parish has a Prayer Shawl ministry.

As Judy has read this blog, she has become very aware of the challenges we face day by day.  She decided to include Mary Ann in prayer as she worked on the shawl.  She sent us pictures of possible choices for the yarn, and Mary Ann picked out her favorite.  Today the package came.  Mary Ann had the shawl around her shoulders this afternoon and evening after I got it from the mailbox.  It is very beautiful, even matching some of the colors in the house.

I should mention that Judy also sent a treat for me.  Having read the blog posts about the newly opened Baskin & Robbins near us, and my Facebook urging that all the local people head over to get ice cream there and announce that Pastor Pete sent them, she knew that B&R gift certificates would be a very appropriate treat — for both Mary Ann and me.

Gratefully, Mary Ann had a pretty good night again last night. She was up for a while today, mostly in the sitting with her head in her lap position.  Friend Jeanne came over to spend the afternoon with Mary Ann.  Unfortunately, Mary Ann ended up folding and going to bed for a nap shortly before Jeanne arrived.

Jeanne stayed for the afternoon while I picked up coffee to go over and visit John who is recuperating from a back surgery, not yet able to get out much.  It was nice to have a couple of hours free to spend just talking about nothing in particular.  John has great stories from lots of interesting work experiences.

When I returned, Mary Ann had slept through Jeanne’s visit entirely.  I was able to get Mary Ann up for a while as Jeanne waited for her ride.  They did get a few minutes of visiting.

Mary Ann ate a reasonable amount for supper.  She stayed up for a while and ended up in bed at about 8pm.  Since she slept a number of hours during the day and didn’t get up until after 4pm, I am again expecting a difficult night.  I expected such a night last night, but it did not materialize.

You know that feeling when coming up to a traffic light that has been green for a very long time (I think called a stale green light), the feeling that the light is going to change just before you get there?  That is the feeling I have about the the good nights and reasonably good days we have had for a while now.  I am expecting the light to change any moment and the intense hallucinations to return.

The good thing is that I have been trying to get to bed earlier each night in anticipation of having a long and difficult night, hoping to squeeze in some sleep before, in between and after the bouts of dealing with the hallucinations.

I just went to check on her.  I think the light is at least turning yellow.  She said she was having dreams about the people again.  The journey goes on.

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

 

February 18, 2010

Hallucination/Delusion Elaborated

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It started with the comment, “last week was really terrible.”  I asked her if she meant the hallucinations. I listed a number of them that I remembered.  When I mentioned the one about my asking for a divorce, she elaborated.  She wanted to know if it was real.  Again, I assured her that divorce was not an option, and she would not get rid of me that easily.

When she elaborated, it was clear that this was a vivid and detailed experience for her that impacted her emotionally.  There were watering eyes and a quivering lower lip as it came out.

She said I had better call my sister Gayle.  Apparently, in her mind not only did she talk with Gayle about it, but Gayle and my Brother Dave and Sister-in-Law Velda were with her at the wedding when I married someone else. She remembered her name, “Lulu.”  At one point, we both laughed at the name.  I asked her to at least fine me someone with a different name than Lulu (no offense to any reader who may be named Lulu).

She also asked if our kids were divorced.  I asked which couple, she said both.  Somewhere in the jumble of hallucinations/delusions/dreams the kids had divorced.  That is when her eyes began to drip a bit.

Now I understand better why she asked me that one night if I shouldn’t be with my wife.  She must have been referring to the one I had married after divorcing her.

I am grateful that we  have had a couple of good days and nights so that there was enough clarity to be able to process what she experienced.

She slept well (as did I) last night again.  She seemed not to be hallucinating very much today.  There were still some of the threads and tiny gold chains she picks up, tries to get off her fingers and into the waste basket.  That is almost a constant presence.

Bath Aide Zandra came and did her shower and hair.  Zandra voiced concern for Mary Ann’s weight loss and her rapid decline.  She wondered about the increased size of the Exelon patch, whether or not meds were adjusted for her lower body weight.  It is generally true that older and more frail patients often need lower doses of medication due to changes in weight and how medicines are metabolized — more to add to the fax to the Neurologist.

After she was dressed and ready to start the day, I needed to help her eat at breakfast.  She did pretty well at lunch on her own.  She was in her chair much of the day, sitting up some, other times in the sitting with her head in her lap mode.

Volunteer Clarene was here for part of the afternoon, so I was able to do some errands and spend a little time walking the path at Cedarcrest.

I had talked with Mary Ann a number of times about going to the 5pm Ash Wednesday worship service.  The brisket and cheesy potato dinner following the service was a plus for her.  When I returned from the errands, I changed for church and we managed to get to to the service.

It was good to sit in church and look around at the people who had been such an important part of my life for so many years.  Mary Ann did reasonably well in the service, just struggled with sitting up in the pew.  I had to gently pull her into the sitting position and hold her there some of the time.

After the service, we headed down to the meal.  One of the Youth helped get our tray to the table.  When we sat down it was apparent that Mary Ann would not be able to handle the meal.  She was shut down — a term used when the Parkinson’s medication is not providing mobility.  It was a little hard to see her sitting there with her head down, immobile while the young family (really nice folks) at the table with us was unsure how to react to her.

She wanted to try to feed herself, but she couldn’t get her hands working.  She agreed to let me help her eat.  Gratefully, most folks know us well enough that they didn’t seem to give a second thought to my feeding Mary Ann.  She liked the food and ate quite a bit.  She accepted someone’s offer to bring her one of the apple desserts.  By that time another young couple, Don and Edie’s Son, Daughter-in-Law and, more importantly, their new little baby joined us. They know us well enough to be very matter of fact about our situation.

Yes, there was a stop on the way home to pick up some Baskin and Robbins.  Mary Ann is now in bed.  I have the uncomfortable feeling that she is having some trouble settling down.  We may be heading into a troublesome time.  There is no telling where the ride will take us tomorrow.  We are both grateful for a couple of good nights and days.

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 17, 2010

A Sleep Day

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , |
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She went to bed at about 9:15pm last night.  She didn’t stir until about 8am, not even a commode trip.  I had gone to bed early and got a good night’s sleep also.  I got her up then to use the commode, talked about going to her Tuesday morning group while she sat on the side of the bed, still half asleep.  As I suspected, she needed to lie back down.  It is almost 12:30pm, and she is still sleeping.  A few minutes ago, I asked if she was ready to get up.  She did not respond.  I will check regularly now, so that she can get food, meds and a trip to the bathroom as soon as possible.

One of the folks in the online Lewy Body Caregiver Spouses group has made a movie and entered it in the the 2010 Neuro Film Festival on YouTube.  That video can be found by going to youtube.com and entering in the search box 2010 Neuro Film Festival.  Her video is on the second page, titled, Life with Lewy 2010.  There is another video on that page that is painfully funny to those who have been impacted by Parkinson’s. That title is, Parkinson’s Gets a Bad Rap.  I happened upon another video on YouTube titled Parkinson’s Disease — That’s a Laugh.  Check them out.

Mary Ann got up around 1:00pm, got dressed, took pills and with help ate her usual breakfast.  She moved into sitting with head in lap mode after eatng.  She was able to communicate a bit.  There was no evidence of her having hallucinations.

Since she was not done eating until mid-afternoon, it was not long to supper.  I had gotten out some beef fillets from the package we had gotten from Omaha steaks a while back.  Along with broccoli and a baked potato, she ate well at supper.  She even had what was left from last night’s B&R trip for dessert.

Volunteer Barb came to visit for the evening while I had a break.  As far as I know, the hallucinations stayed away during that time.  Mary Ann is in bed now.  How the night will go remains to be seen.

I headed over to Barnes and Noble to find a book that I could sit and read for a while, enjoying a hot chocolate in the Starbuck’s there.  After drinking PT’s coffee, purchased directly from the growers, roasted to perfection here in small batches, Starbuck’s coffee just doesn’t measure up.

I had no intention of buying a book, but I found one that I could not resist.  It is called The Mind of God: The Scientific Basis for a Rational World, by Paul Davies. I thoroughly enjoy reading books that probe the wonders of the laws of physics written by folks intelligent, intuitive and honest enough in looking at the best that science has to offer that they can see the “something more.”  This writer does not conclude the existence of God, but allows that what is implied by the universe and our place in it is something that some might call God.

Since I happen to be a person of faith, I don’t look to this or any other contemporary work to define my view of reality.  I suspect that if/when I finish the book there will be nothing with which I need to disagree to sustain my faith.  In fact, my usual experience in reading such books has been to simply see expanded the wonder and appreciation at what the best of scientific inquiry can bring to my faith.  For me such reading is devotional at least as much as it is intellectual.

I am glad that I got plenty of sleep last night.  Otherwise, I would not have been able to track with the author as I read the first chapter this evening.  It is encouraging evidence that my brain may not yet have atrophied completely!

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 10, 2010

Unrelenting Hallucinations

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The hallucinations are now a constant presence.  All the time Mary Ann has been with me, she has been actively hallucinating.  Last night she was up at regular intervals, always hallucinating.  I had to talk her into lying back down.  She tried to get up for the day beginning at about 4am.

It has been harder to do everything we normally do.  Putting clothes on is more difficult since she is having trouble connecting on what leg to put where or how to hold her arms so that a shirt can be put on.  Often she wants to know why we are doing one thing or not doing another, often unsure what time of the day it is.

I knew it would be impossible for her to stay seated and safe while I took a shower.  Before drying my hair, I went out to check on her.  She was moving the lift out of the front door area.  When I came up she looked down the hall toward the office saying something about my mother, as if she was lying there. I don’t think she would head out the door of the house, however, I cannot rule out completely that possibility.

When finally I was finishing getting her ready to go to her Tueaday morning Bible Class, I mentioned that that is what I was doing.  “Bible Class, that will be somethign new,” she said.  At that moment, she had never heard of the group she has been meeting with for years.  During the Bible Class, apparently she was making the eating motions she often does, picking up imaginary pieces of food and putting them in her mouth.

There simply was not a waking moment that was not filled with hallucinations and the need to deal with them.  Mary (who schedules Mary Ann’s Volunteers) came over for a while to visit this afternoon.  Most of the time Mary was here, Mary Ann was in her transfer chair with her head down, close to sliding off on to the floor.  At least we were not up constantly chasing hallucinations while Mary was here.  Mary Ann decided to go and lie down toward the end of Mary’s visit.

Even when she lay down, she did not actually go to sleep.  Starting while Mary was still here and continuing until supper, she was in bed, but up and down as she is at night now.  If not very helpful to Mary Ann, at least the naps in the past have given me time to go to the computer, or just vegetate for a while.  Not this time.  She demanded my full attention and has done so every waking moment, as well as very many times during the night.

While, I, of course, am also in need again of some good nights of sleep, my being rested will not help in dealing with the level of needs she has now.

Last evening I enjoyed a wonderful break.  There was a local Audubon Society program at the library.   Volunteer Shari happened to be scheduled in the evening covering the time the program was held.  This was only the second time I have been at a local Audubon Society event of any sort.  The last time I came and went with no conversation, almost anonymously.  This time I knew someone who worked with the presenter and the one who introduced him.  Not only that, for fifteen years at a church in the Kansas City area, I had ministered to the family of the presenter’s uncle.  Those connections broke the ice, so I got to enjoy lots of conversation time at the end of the program.

As I was preparing to leave for the program last night, I realized just how much I needed time away and something distracting from the intensity of our situation at home at the moment.  This morning as the time for Mary Ann’s Bible Study was approaching, I was concerned about the uncontrollable stream of hallucinaitons, how that would play while she was with the group.  The weather was not good, as snow was falling at a far more rapid pace than predicted, making the side streets difficult.  There was plenty of reason not to take Mary Ann to her Bible Study.  She certainly seemed unaware of it in the midst of the hallucinations.

I just needed to get her there so that I could have another break from the intensity.  I knew her Truesday morning  group would accept her whatever she said or did.  I left my cell phone number with Mary, who sits next to her in the class, just in case Mary Ann’s words or actions were becoming a problem.

There seems to have been a transition from finding things to do when Volunteers come so that I will be more effective over the long haul, to needing the break just to survive another day.

I will be interested in how tonight goes.  Mary Ann has to be exhausted from all her activity day and night with no nap time to speak of in the last thirty hours or so.  She has needed my participation a number of times already tonight since she lay down two and a half hours ago.  The hallucinations have continued. It does not look good at the moment for any uninterrupted sleep tonight.  Assuming there is not a good night’s sleep for me either in the next couple of nights, I will need to try again on the paid overnight help.

I had better get to bed.  I am going to bed earlier and earlier in hopes that I can squeeze some sleep in before the worst of the night time problems emerge.  So far it has not been much help to get in there early.

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 5, 2010

Change is the Only Constant

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

February 4, 2010

Too Good to be True

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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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 31, 2010

Craziness Continues

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And so the ride goes on! 

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

 

January 29, 2010

Milder Hallucinations and More Lucidity

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , , |
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“Allen, the guy you were engaged to when we started dating wishes you well,” I told her this morning.  One of her long time friends from those years mentioned in an email that he had asked about her.  I waited to mention it until she had come out of the worst of the steady stream of hallucinations.  In a very matter of fact way, she said “that was from the past.”  Later I asked her what year in school he was in relationship to her.  She said he was in her brother’s class in high school, two years ahead of her.  By the way, before tongues start wagging, I didn’t know she was engaged, and she was already planning on sending the ring back.  He was in Florida and she was in Northern Illinois.

Last night began as I had expected after Mary Ann napped for over six hours during the day.  She was up many times during the first part of the night.  Most of the times she was up, she just sat on the side of the bed.  I came in to ask if she needed anything each time.  She asked if we could go home, almost every time.  I pointed out her quilt hanging on the wall and tried to convince her that she was in her bed, it was night time and she could lie down and go to sleep.  

I went to bed pretty early.  She continued to get up for a while, but finally settled and slept the rest of the night reasonably well (with the usual interruptions).  Just once she ended up on the floor next to the bed.  She did not try to get up early, as she had most of the last few mornings.  When she did get up. the mild hallucinations were still there, picking up things, pulling threads (or the thin gold chains) off her hands.  She was not having the steady stream of hallucinations that included people, and her mind seemed clearer.  

I will admit that I have been getting more and more concerned about my ability to continue this task as the intensity and frequency of the hallucinations has been increasuing so steadily.  This morning’s clearer time was a tremendous relief.  It may only be momentary, but it provides some hope that the roller coaster ride still has the capacity to go back up for a time. 

Jacki came to stay with Mary Ann and spend lunch time with her.  I had another lunch out with a friend.  As far as I know, Mary Ann did fine while I was gone. 

By the way, I made a very important discovery as I drove back from the lunch.  I stopped to see the progress of the newly remodeled space that had been the Baskin & Robbins that served as our regular supplier before the owner retired.  It is now an enlarged space that will open this Monday, a brand new Baskin & Robbins.  And some say there is no God! 

Back to the day.  Parish Nurse Margaret stopped by with a request that we help dispose of some box lunches left over from a meeting.   We graciously agreed to help her out in her dilemma of what to do with them.  We are such good people!  I asked Margaret if she would take Mary Ann’s blood pressure.  It was 170/90.  Apparently, the Midodrine is working to keep her BP high enough so that she does not faint.  We continue to accept the slow damage being done by the high blood pressure in trade for a better quality of life resulting from reducing the fainting spells (Orthostatic Hypotension).

Mary Ann was obviously tired this afternoon, but she was willing to go to the grocery.  We ran into a neighbor and friend, Ann, there, always a treat.  After we got home we ate the box lunches.  Mary Ann was in bed about an hour later.  She got up moments ago to tell me about a dream.  When I got her back to bed she looked out the bedroom door and said the people were back, this time with a baby.  After a time sleeping, she sat up again.  When I went in, she said the family how has a horse.  Then she asked if she was in Topeka.  She said in the dream she was just having, she was in Alaska, and the family was there with the horse.  I told her that I was glad they were in Alaska, maybe they could stay there and not bother her here.  She is back in bed.  I have no doubt the family will return to Topeka and be back in our house.  We will see how the rest of the night goes. 

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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