August 31, 2010

Mary Ann’s Last Hurrah! Our Last Attempt at Traveling.

Posted by PeterT under Daily Challenges, Life History, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , |
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Less than a year ago, Sunday, October 25th, we got into the van and headed out on our last adventure traveling together.  Our first stop was the 60th birthday party of friend John in the Oklahoma City area.  I had not given any indication that we might be coming, so it was a complete surprise.  He had not seen Mary Ann in fourteen years.  We stayed for a few hours, had a great time, and then headed for a motel that was on the way to our next stop.

That stop was a three night, four day stay at what I have no doubt is one of the very best Bed and Breakfast’s in the nation.  It has been featured in Midwest Living and easily measures up to the PR on it.  The name is Lookout Point, Lakeside Inn, located in Hot Springs, Arkansas.  (www.lookoutpointinn.com)  I have described it more than once in earlier posts. 

There are twelve rooms and a condo from which to choose.  Every room has a balcony or patio overlooking a quiet bay of Lake Hamilton.  There is a secuded feel to it because of how it is situated at the edge of the bay.  The gardens are unbelievable, lush, full of color in both spring and fall, with a large fountain feeding a stream and waterfalls that run through the gardens down to the lake.  One of the rooms is fully handicapped accessible.  We had stayed there a time or two before this. 

The breakfast is always a gourmet meal and the 4pm wine, cheese and freshly baked goods are always a treat, especially on Chocolate Wednesday.  There is original art work everywhere.  Hot Springs is one of the top ranked small cities in the nation in the fine arts.  Owners, Ray and Kristie are gracious hosts.  Kristie is an Ordained Pastor in the United Methodist Church who remains active doing weddings and retreats among other things.  The library there includes a section on Spiritual Formation.  By the way, the library, a separate reading room with a fireplace and a huge sunroom, along with the dining room and large patio eating area fill out the areas available for relaxation and renewal. 

Mary Ann was doing well during our time there.  We got out for ice cream at least once.  We toured some of the first class Art Galleries in the downtown area.  We drove up a winding road right in town, a road that took us up to an overlook providing a breathtaking view extending many miles.  Our last evening was spent sitting in a protected area of the outdoor patio enjoying a gentle rain. 

On our previous trip to Lookout Point, Mary Ann decided that we should head to a place she thought was nearby at which people can search for diamonds and keep what they find.  It was very hot when we were there last.  Mary Ann used the wheel chair almost exclusively.  I was picturing trying to dig around in the hot sun while at the same time having to move the wheel chair through gravel.  When Kristie told us how far away it was, I was much relieved that it would be too far to manage. 

Unfortunately, Kristie mentioned an alternative.  It was a quartz mine in easy driving distance.  It was not long before Mary Ann was sitting in her wheel chair next to a huge mound of mud, while I dug out promising hunks for her to look at and trying to find quartz crystals.  Mary Ann baked in the sun and I sweated in the mud until we managed to find a few little crystals and one big one.  Finally, Mary Ann said she needed to get out of the sun and we called our quartz crystal mining operation to an end.  We brought back a bag of chunks of mud that have crystals in them.  That was almost two years ago, and the bag of hardened hunks of mud is still in the garage waiting to be cleaned. 

On this trip, gratefully,  Mary Ann did not ask to go to the quartz mine.  I think she had baked long enough the last time.  The weather would not have allowed it anyway this time.  It was just a good trip, even with the rain.  We both enjoyed  it in spite of the physical challenges.

On the way back home, we stopped overnight in Eureka Springs.  By the time we arrived at the motel there, the gentle rain had become not so gentle, just about washing Arkansas away.  It poured longer and harder than I can ever remember experiencing before.  In the morning, we discovered that the breakfast that came with the room was being served in a separate building in the lower level.  There was no elevator and a huge flight of cement stairs between us and the food.  I went down to check on the breakfast to see if it would be worth the effort to try to get Mary Ann to it.  There was a very large dining area with long tables laden with all sorts of  breakfast foods, including hot out of the oven Quiches of various kinds. 

It was too good a layout to just try to bring up a couple of morsels to the motel room.  We decided to  try to get Mary Ann down the stairs and into the dining room.  She stood up at the top of the first section of stairs while I moved the wheelchair to the first landing.  Then I went back up and held her tightly as we moved down the stairs.  Remember, people with Parkinson’s can negotiate stairs better than level areas.  The problem, of course, was the issue of the Orthostatic Hypotension that caused her to faint after a time of standing or walking.  Since the last visit to my Brother’s home, Mary Ann had been walking without fainting.  We had increased a medicine (Midodrine) that helped keep her blood pressure up, but often way above safe levels. 

We made the first landing, where she sat for a bit.  Then she stood up, I carried the wheelchair to the bottom of the next section of stairs, came back up and held her tightly again as we completed the descent.  We both ate well, but I kept thinking about how foolish it might have been to come down the steps, since there would have to be a return trip.  Finally, we were the last, and the lady in charge needed to close things up.  While we would have made it back up those stairs one way or another, the lady in charge took us through the kitchen and out another door to the bottom of a steep drive for delivery trucks. 

The drive was so steep it was almost impossible for me to keep my footing and push the chair up to the top.  God is good!  A delivery person arrived just at that time.  Between the two of us, we managed to push her to the top of the drive.  When it came to food, there was not much that would stop us. 

We headed back home.  Mary Ann continued to do well.  That evening, October 30, Mary Ann was fine.  We got up the next morning and she seemed all right.  Later in the day, after she had a long nap, we headed out in the car.  I stopped for coffee.  When I got back to the car, she was not feeling well.  I gave her a nitro pill and headed for the next stop at the store while the pill had a chance to work.  After I got out of the store, she still did not feel well.  She described the feeling as a heaviness in her chest.  That was all I needed to hear.  We stopped at the house to get a couple of things, and I took her right to the Emergency Room.  As suspected, it was congestive heart failure. 

She recieved wonderful care, but the decline was dramatic.  She was there only a few days, but she never regained the ground she lost.  It was the beginning of the last leg of her journey here, our time together.  That journey is recounted in great detail in the posts written almost every day from then until the end.  I am not ready or able to review those months in detail yet. 

We did the best with what we had.  Mary Ann squeezed the most she could out of every day.  She never gave up until she decided it was time to leave.  Then she just stopped eating food and drinking any liquids.  For 23.5 years she pushed to the very edge of the limits the Parkinson’s put on her and then stepped over those limits, beyond what could reasonably be expected of her.  I did everything I could think of and was able to do to provide the best care, the best quality of life within my power to give.   I think we both dealt with what came our way, yes imperfectly, but with dignity and courage, living every day with meaning and purpose.  The strength to do so did not come from us, but the One who made us and never gave up on us.  The One who sits at table with Mary Ann now.   I miss her more than words can say.

 

August 27, 2010

A Miracle: She Started Walking Again.

Posted by PeterT under Daily Challenges, Family, Help from Others, Life History, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , |
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It was a little less than a year ago that we headed off for a major trip again.  This one was to Kentucky to visit Daughter Lisa, Denis, Abigail and Ashlyn.  When we had done it in one day, it usually took us about eleven hours to get there.  This time, we stopped at a motel at about the halfway point.  We got plentyof rest, had a leisurely morning, and headed on to Louisville around noon.  Mornings always were extended by the time it took for each step in preparation for getting ready to go anywhere.  It was just a part of our reality. 

On other occasions we had stayed in the downstairs at Lisa’s.  Mary Ann’s Orthostatic Hypotension made that a challenge.  When she stood, her blood pressure would drop making her susceptible to fainting.  It was almost comical to see us help Mary Ann up the stairs.  One odd characteristic of Parkinson’s is that while feet may freeze on the level, stairs are no problem to negotiate.  The challenge was to get her up the stairs before the low blood pressure no longer provided an adequate blood supply to her brain to keep her from fainting. With one of us beside her and one in back, we raced up the stairs to a waiting chair.  On some of our visits, every time we arrived at the chair, she would faint.  On some visits she had less difficulty with it.  There was nothing we could come up with that explained why some times were better than others.

By this time last year, the OH was bad enough that it was no longer an option to stay in the downstairs.  We chose to stay in an extended stay motel.  It worked out well.  We took whatever time we needed in the morning at the motel, and ended up at Lisa’s house around noon.  We spent time with the family as long as Mary Ann’s stamina held out, and then headed back to the motel. 

We headed out in the car with the family, often to visit Huber’s winery and garden produce market and bakery (and ice cream parlor) in Southern Indiana near Denis’s family, with whom we visited.  Usually there was a trip to a restaurant.  There was lots of time watching Abigail and Ashlyn doing a variety of things.  There were many hugs, lots of pictures drawn and colored.  We had a good visit.

When we left, rather than coming straight home, we made the relatively short drive to Columbus, Indiana, to visit Brother Dick, Dee and the family.  Dick is a retired Pastor, fourteen years my senior.  We are almost from different generations, but have come to know and love each other as the years have gone by, as has been so with Dave, Gayle and Tish, our other siblings. 

I have described the setting at Dick and Dee’s place a couple of times before.  They live on a five acre plot with trees and ponds and gardens everywhere.  There are bees that provide honey, fish to be caught, vegetables to be picked from the garden and either eaten right away or canned to be eaten later.  Freshly baked bread and home made granola are mainstays.  There are birds constantly at the feeders attached to the rail or sitting on the deck right outside the floor to ceiling windows. 

We enjoyed a wonderful meal.  Then came the miracle.  Mary Ann had declined to the extent that walking more than a few steps had pretty much ceased to be an option — we thought.  When she tried to walk, many times the blood pressure would drop and so would she.  When we arrived at Dick and Dee’s, it was a little challenging to get the wheel chair where it needed to be.  Mary Ann just got up and walked the length of a long hall to the living room.  Then when we looked around the house, she walked and did not fall.  Later, we went over to see the magnificent house their Daughter Jill (our Niece) and her husband had built to house their three boys, by then in junior high and high school.  The house was perfectly outfitted for the boys having friends over to hang out together. 

Dick drove Mary Ann over in the golf cart he and Dee use to get around on the acreage.  We didn’t take the wheel chair.  Mary Ann toured the main floor of that huge house on foot, never falling once.  I could hardly believe what I was seeing.  After spending the night in a nearby motel, we headed back home the next day.  This time we made  the trip in one day.  For some reason, going home always seemed to go faster.  Part of that sensation was due to the fact that we crossed a time zone creating the illusion that we had taken less time. 

After we got home, the walking continued for weeks.  Before we left, I would jump up every time Mary Ann got up so that I would be ready to catch her before she fell.  I would, of course, try to convince her not to get up without warning me so that I could come and help.  After we returned, I relaxed and stopped jumping up when she stood.  That change made our days much less stressful.  That miracle made our last fall together a pleasant one. 

In the next post on this sight I will describe the subsequent trip to a Bed & Breakfast in Hot Springs, Arkansas, the one that would be our last trip. 

 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.

 

June 6, 2010

Denial and Funeral Planning Don’t Mix Well

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , |
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What will she wear, what songs will be sung, what passages read.  We talked about some of those things years ago when we filled out forms for a Pre-need plan at the local funeral home.  The major decisions are already made.

I have to admit that it is painful even to talk about such things.  It was fine to do so many years ago — not now.  I am refusing to allow it to sink in and touch my gut.  The pain is there, but it is an aching now.  I have tasted it enough to know that the pain will sharpen and overwhelm when it breaks open.  Certainly I will survive as have tens of millions before me.

Friends Mike and Judy came over to spend time with us today.  As always it was a good and meaningful time.  Mary Ann connected with their presence and appreciated it.  Since Mike is the Pastor who will preach at the funeral when it comes, we needed to talk some about that.

Later, Pastor Jim, who followed me as Senior Pastor of the congregation I served for a dozen years, came over to celebrate Holy Communion with us.  There were enough of us to feel like a congregation.  Pastor Jim provided a meaningful ministry through a service of Scripture, prayer and song.  With three Pastors, two Spouses of Pastors and one Daughter of a Pastor, we surprised Jim by knowing the words to the songs (multiple stanzas) by heart.  He didn’t have to sing solo.  We were a choir.

One of the songs we sang is “Beautiful Savior.”  Both Mary Ann and I grew up in the same congregation in Aurora, Illinois.  Every Sunday worship through all the years we were growing up ended with “Beautiful Savior.”  As we gathered around Mary Ann’s bed and worshiped, sang and shared the bread and wine of Holy Communion, there was a peace about what is happening.  Mary Ann was a part of it even if she was not able to sing out loud with us.

With that said, as Son Micah commented later when he arrived, “this is hard.”  It hurts.  It just hurts.

Mary Ann seemed to have a comfortable day.  Last night, I was up a few times to listen for her breathing.  I tried to move her a little to minimize the pressure sore problem.  This morning when Lisa and I changed her, she did not show much evidence of the first stage of pressure sores — just one red spot on her ankle.  It was a relief to me that she seemed to fare well last night.  She does not move at all other than a foot moving a bit once in a while.  That is a formula for bedsores.

One happy surprise was that while Lisa and I were rolling Mary Ann this way and that to change her and check her, it just caught our funny bone.  We started laughing and so did Mary Ann.  It was not audible, but had it been, it would have been a belly laugh.

Lisa headed off for church and a local Art Fair.  I read a bit, then started a new book, titled Broken Open, by Elizabeth Lesser.  It is subtitled “How difficult Times Can Help Us Grow.”  How is that for timely.  It was recommended by the online Lewy Body Dementia Spouses group.

I decided to move into the bedroom to read, just so that I could be with Mary Ann.  It was a pleasant experience.  She seemed comfortable.  I asked how she was doing and she responded audibly that she was okay.  We just had some quiet interaction.  I gave her some water.   I realized just how wonderful it is to be able to spend this time in our lives together at home.

Later in the day, Son-in-Law Denis, arrived to provide Lisa with support and help with the girls.  Denis and the girls will be going back to Louisville on Tuesday.  Son, Micah and Granddaughter Chloe arrived at about the same time as Denis.  This was around the time Mike, Judy and Pastor Jim left.

Lisa and I changed Mary Ann again, examined her for red spots and turned her.  It was disappointing to see some red areas, indicating the potential of pressure sores beginning.  I plan to phone the Hospice Nurse tomorrow about the possibility of a hospital bed with the self adjusting air mattress on it to help avoid the worsening of those spots.

One annoying element in the day was the waterfall simply stopping.  It just stopped.  No one did anything to it.  It just stopped.  I was able to get hold of Brad (through his wife since they were driving) who promised to come after his work tomorrow afternoon to work on it.  Brad installed the pondless waterfall.  I certainly realize just how important a role that addition to our home is now that it is not working.  We built the sun room so that we could see the waterfall!

While Mary Ann is, of course, very vulnerable, and anything could happen at any time, she still seems fairly strong.   She ate a small dish of ice cream this afternoon while lying in bed. The Orthostatic hypotension has been so bad that it is pretty much impossible to sit her up for more that a moment.  Her blood pressure drops and so does she.

We continue to take things as they come, grateful for what we have, hoping for a peaceful release when the time comes.

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.

 

June 5, 2010

Oxygen and Morphine Coming Tonight

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , |
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We may or may not use them since the pain has now subsided.  Mary Ann had some heart pain tonight.  At first, one nitro pill seemed to take care of it.  Daughter Lisa was with her while I had a couple of hour break at a church event.  When I returned, Mary Ann said her chest still hurt.  We used two consecutive nitro pills about ten minutes apart.  She still said she had the pain.

At that point, I phoned the Hospice Nurse.  She suggested trying a third nitro pill.  She also said she would call the Medical Director.  She thought he would probably suggest the oxygen and Morphine.  The third nitro pill seemed to work, but the wheels are now in motion for us to receive the oxygen and Morphine tonight.  It is about 11:30pm as I am writing this.

Today had some tough times and some good times with Mary Ann.  The first activity this morning was at least a half hour of intense physical exertion in the bathroom.  It exceeded the terrible Saturday morning bout a couple of weeks ago.  There was a lot of production this morning when on the toilet stool (a good thing), but the fainting and form of seizure that results in her stretching out and stiffening all combined to make it harder than ever to handle.  I was dripping in sweat by the time it was over.  I did not call Daughter Lisa for help since I wanted to determine whether I would be able to do it by myself — probably not much longer.  I will need to figure out a way to take care of those tasks while she is still in bed.

The good times included a thorough cleaning by the Hospice Aide.  It was a bed bath with the addition of hair washed with shampoo and water in an inflatable basin for that purpose that I bought at the Munn’s Medical yesterday.  Sonya got her dressed and brought her out in the transfer chair.  She had the best hour or so we have had in many days.  She greeted Lisa and Granddaughters Abigail and Ashlyn.  She drank Cranberry juice, she ate tapioca and yogurt, drank water.  Then we rolled her outside to join Lisa in watching the girls use the little slippery-slide Lisa got at Target yesterday.

Neighbor Carol came by and spent time with Mary Ann, as well as Lisa and the girls.  After a while, Mary Ann needed to lie down again.  Friend Jeanne came by for a few minutes to see Mary Ann, as well as Lisa and the girls.  Mary Ann stayed in bed either resting with her eyes sometimes open, sometimes closed for the rest of the day.

At one point in the afternoon, she seemed to want to sit up, so Lisa helped her get up on the side of the bed.  Shortly, she fainted and shifted into the stiff as a board mode.  We got her back lying down.  Later, just before I left for the Youth Fundraiser, Lisa and I took her to the bathroom.  It went reasonably well, but ended with the stiff as a board mode.

…It is now about 12:30am.  The oxygen is here.  Hospice Nurse Lisa brought the Morphine and explained how and when to use it.  Her vitals are so good (other than the blood pressure) including the oxygen saturation percentage, that it seems unnecessary to use the oxygen right now.  If the chest pain returns, I will start it.  That is in accord with Nurse Lisa’s counsel.  The same is so with the Morphine.  I will give the lowest dose if she gets agitated, has trouble breathing, or the chest pain returns.

It was quite a flurry of activity, maybe not actually necessary at this moment since the pain subsided.  It is comforting to have helpful options available for the time that those options are needed.  Things seem to be moving both up and down pretty quickly.  Knowing Mary Ann, I will make no predictions on how things will proceed from here.  I am just along for the ride.

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.

 

June 2, 2010

Almost No Food in Four Days!

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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She ate one six ounce container of Yogurt for breakfast.  That was the biggest breakfast in four days.  Then she didn’t even eat the ice cream pie for supper.

I made the mistake of taking her blood pressure when she was lying in the bed this morning.  I thought it would be up some since I restarted the Midodrine yesterday to see if we can reduce the fainting spells.  Her BP measured 280/130.  That is frighteningly high.  Here is the kicker: twenty minutes later, while sitting at the table I measured it again. It was 95/75.  In the mid-afternoon, while she was lying down, I took it again.  It was 245/115.

Since we have few options, I plan to continue the Midodrine at some level.  She has still been fainting, in fact there is a new twist.  After being out for a while, twice shen stiffen like a board in a mild seizure-like event.  She wouldn’t bend — in the middle or at the need.  She was stretched out full length, locked in that position.  It happened once when trying to get her back into bed.  It happened a second time while on the toilet stool, dealing with a messy BM.  The good news is neither did I become frustrated or get upset.  I just laughed.  I waited until the stiffness seemed to soften a bit and just picked her up and repositioned her.

I am tired of being upset about what is happening.  It is time to just deal with it.  I am grateful that our Daughter, Lisa, and Granddaughters, Abigail (7) and Ashlyn (5) arrived late in the afternoon.  It has been good to see the girls and have Lisa to talk with.  Just as Son Micah got to experience the challenge of bathroom duties on Monday, Lisa got to experience that challenge today.  Mary Ann responded a bit a couple of times to Lisa.  Whether she is able to respond or not, it is clearly meaningful for Mary Ann to have them here.

I did get to talk with someone on the Staff at the Senior Diagnostics Center at a local hosptial today.  The person was a bit abrupt and on hearing that Mary Ann had been diagnosed with Lewy Body Dementia two or three years ago, she responded that LBD folks go quickly.   While I do not wish to ignore the harsh reality of our situation, it was no fun to have it tossed in my face in such a matter of fact way.  I explained the situation, adding that her vitals are still pretty good.  She did not dismiss us out of hand, but seemed genuine in saying that she would check with the doctor and call us back tomorrow.

I have very low expectations of any meaningful option emerging when she calls back.  There are some hints that the Midodrine raising her BP is allowing a little more mobility — at least for a few moments before fainting.

It was good to have an extra set of hands and arms when the heavy lifing came.  Lisa was a CNA for some years while in high school.  She ended up Administrator of a large multilayers facility for the older population.  She has been parenting full time since the girls were born.

Tomorrow evening, Son Micah will join us as we look at the rapid developments these last few days.

There is more that I could say, but I am struggling to keep my eyes open.  It is time to 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.

 

May 30, 2010

Losing Ground?

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I am just not sure how to assess the day, but I am sure I don’t like it.  The signs pointed to the hallucinations firing up last night.  She was restless at first.  The hallucinations fired up between 3am and 4:30am.  Then she slept for a while.

She did try to get up early, but when I took her to the bathroom, she fainted.  I had to put her back into bed and she slept for a while.  There has been a pattern that has played itself out all day.  When she is lying down, she has often been talking apparently about or to the hallucinations.  I described that before. She often has her eyes open when she lying there talking.

When she became alert enough to sit up, usually wanting to go to the bathroom, after a short time her eyes would slam shut and it would cease to be possible to communicate with her.  She simply could/would not respond.  I had to put her back into bed since there was really no other option.

She did manage to get up for breakfast, but then and most of the rest of the time I tried to talk with her, she could not speak intelligibly.  Once this evening when the words she used were recognizable, they did not match what she wanted.  She said she needed to cook a meal, when it became clear that she intended to say a drink of water.

[WARNING — GROSS CONTENT] I was barely able to get food into her mouth for the little bit she ate. At breakfast, she did get her pills down with much difficulty.  I fed her a few spoons of yogurt before she just didn’t take any more.  I found out shortly thereafter that the last bites had not been swallowed.  As she sat in her chair for a while, I had to get napkin after napkin to deal with what had not gone down, along with lots of clear fluid.  Sorry to include such unpleasant stuff, but it I have passed the will to be delicate and I am too tired to try to think of some cute euphemistic way of saying it.  This matter of not swallowing food and uncontrolled saliva production is a new and unsettling issue for me.

The difficulty in dealing with the once or twice a day intestinal activity really is pretty close to being unmanageable by myself.  To hold up her weight with one arm, as she is pulling away from me while I am cleaning with the other is just barely doable.  That has been continuing for many days now with no sign of improvement.

All of this is becoming a very old story to those of you who read these posts regularly.  What seems different to me is that we appear to be losing ground at a pretty rapid rate by comparison to past declines.  It seems that every few days something worsens.  The changes seem too rapid to me to be a normal part of the disease process.  In my mind the evidence still points to medication issues for the rapidity of the decline.  The trouble is that there seems to be no clear and definitive approach to medicating those with a form of Lewy Body Dementia that produces consistent results.  The same med can produce opposite results in different patients.

I may simply be in denial and the rapid changes may just be a function of the disease.  As our Parkinson’s Speicalist once said, after 23 years of the disease and the meds, there is no telling what problems are caused by side effects of meds and which the progression of the disease.

Volunteer Elaine came over to spend time with Mary Ann this morning while I went to the lake to sit and read and ponder and look for birds.  Today, it was hard to leave, and I couldn’t let go of concern for Mary Ann lying in bed talking to the hallucinations.  Mary Ann ended up sleeping (or just lying there) the entire time I was gone. I just don’t like how much more difficult this is getting and how fast it is moving.  It is not so much life threatening as it is that our system here at the house is being threatened.

One bonus this morning was that Elaine surprised us with a Quiche she made for us while at the house.  Not only that, but Volunteer Tamara had asked yesterday if she could bring food to us again.  When I answered her question about what Mary Ann liked, what popped into my mind was, Quiche.  This morning while Elaine was making her Quiche for us, Tamara brought two more.  Mary Ann ate a piece of one, although the same thing happened that had happened with the yogurt earlier in the day.  I ended up eating a couple of pieces of one and one piece of another by the time the day was over.  They all appear to have home made crusts.  They are wonderful.  One will end up in the freezer in pieces to be heated in the microwave later, but I suspect two of them will be long gone before that happens.

I am hoping for a better day tomorrow since our Son, Daughter-in-Law and Granddaughter are coming over for a while for Memorial Day. The menu will be Quiche — and Glory Days pizza for those who are not into Quiche.

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.

 

May 29, 2010

They’re Back!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , |
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Here we go again!  Last night included a number of times up, suggesting that we were cresting the hill on the way back to hallucinations.  During the night, they were not as intense as I expect them to be the next couple of nights (hopefully only a couple) before there is any realistic hope of a break from them.

This morning she started trying to get up very early.  I managed to get her back in bed a number of times until about 7am.  I gave up on that strategy and got her up.

The truth is, I am more frustrated with my reaction to the hallucinations than I am the hallucinations themselves.  I want to become able to take them in stride and respond without getting grumpy.  I apologized for being so grumpy and explained to her that I was frustrated from trying to deal with them for so long and feeling helpless to do anything about them, especially with no medical help from a competent doctor at the moment.  I was a little surprised that she responded in a way that suggested what I said had found a path through the hallucinations to Mary Ann herself.  She seemed to understand what I was saying, recognizing especially the issue of trying to deal with this with no doctor in the picture yet. In fact she managed to describe of whom she was thinking well enough to determine that she was suggesting a local Neurologist whom we have used in the past (when she had a stroke), a doctor we like.  He is not likely to have the specialized knowledge that we need, but it is worth a try.

At the moment, I have not received return calls from two contacts made last week.  I am disappointed, since in one case a nurse from a dementia clinic was supposed to phone with answers to my questions about Lewy Body Dementia.  In the other case, I left a message on an answering machine. The only option from which I have the information I need that would allow us to proceed is the one I find the most distasteful.  It would involve a few days in the hospital.  The hospital has always thrown Mary Ann for a loop.  In each case there was pretty much a psychotic break from which we never really regained the lost ground.

Today, after our conversation, Mary Ann managed to stay seated long enough for me to get a shower.  I gave her the morning pills and got her breakfast.  It was not too long thereafter that she ended up back in bed.  She said she wanted to go to the bathroom, but she fainted to such an extent that I could not get her on the toilet stool.  I put her back in bed and she has been there ever since.  That was around 9:30am.  It is now almost 4pm.

Volunteer Tamara, came at 10am to give me a chance to nap if we had had a difficult night.  The timing was perfect since this was the first bad night in the last five.  When Tamara was with Mary Ann last Monday evening in a regular Volunteer slot, it was obvious to her that I had not slept much either in the prior 8 days of Mary Ann’s intense hallucinating.  She suggested the option of adding a nap time option on Saturday and one other day next week.

Volunteer Coordinator Mary and I are talking about adding a Saturday time slot regularly just for that possibility.  There is no way to be sure when bad nights will come, but having the time to nap or just get away for a while is helpful.  This morning I was able to nap for a couple of hours and also leave the house to do a couple of errands before Tamara was due to leave at 1pm.

While, since Mary Ann has slept so long, I would have been able to nap today, I would not have been able to get out to do the errands.  I could not have known in advance that she would sleep most of the day.

What lies ahead is still unknown.  Of course, that is always true, but there are not even clear expectations.  The pattern from before the increase in dosage of Seroquel was that Mary Ann would hallucinate for two days and three nights, then sleep for two days, then have a transition day during which the most lucid moments came. Then the hallucinating would begin again.  Since this disease is so erratic in its presentation, using the word “pattern” is pretty silly.  It does what it will do when it chooses — and that is that.

…It is about 9:30pm now.  She slept through until about 6:30pm.  She had indidcated that she wanted something to eat, but by the time we got to the table, she was no longer able to speak intelligibly.  I couldn’t figure out what she wanted or if she still wanted anything.  I just held her for a while.  At that point, she couldn’t sit up straight — almost fell off the chair.  I did manage to get her to take some spoonfuls of applesauce.  Finally, she just could not respond in any way.  It was tough to get her from the dining room chair to the transfer chair.

I managed to get her to the bed, but by then it was apparent that there had been some intestinal activity.  She was almost completely limp, but I needed to get her to the toilet stool, cleaned and changed and back into bed.  If last Saturday’s struggle with that task was a 10, this one was a 9.9.  It all got done and she ended up back in bed.  I was physically as exhausted as I was last Saturday.  I was not as emotionally exhausted.  For whatever reason, I kept my cool during this one.  I just did what needed to be done.  I hope some progress has actually been made in dealing with that problem.  Admittedly, I was much more rested today than I was last Saturday.

I settled on the deck for some devotional reading.  It was a beautiful evening, warm, but with a pleasant breeze.  After a short time there, I saw on the video monitor that Mary Ann was moving.  I went in to check.  She was able to speak more clearly.  She wanted to eat something. This time it was some vanilla ice cream with hot fudge and pecans.  After eating, she watched Dr. House for a half hour or so, and has now taken her bedtime pills and gone back to bed.

Today while she was lying in bed, on occasion she would be there with eyes open, talking to people only she could see.  While we were sitting next to one another in front of the television before she finally went to bed, she was doing the same, this time with her eyes closed.

Sleeping all day and having moved into the hallucination cycle leads me to expect a more difficult night tonight than last night.  She appears to be restless at the moment.

…This time it was another trip for #2.  This time it was at least a 9.95 compared to last Saturday’s 10.  She was sort of dead weight thrughout, but including enough involuntary twisting and moving her weight against what I was trying to do as I sought to hold her up, that I almost could not get the task done.  If nothing in this short and chubby body gets broken, pulled or herniated, I am going to be a force to be reckoned with physically.  This is like going to the gym multiple times a day.

I had better close, otherwise I may be writing all night and have nothing left to write about tomorrow — unlikely!

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.

 

May 27, 2010

I Keep Waiting for Their Return

Posted by PeterT under Daily Challenges, Hospice, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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There is no reason to think the hallucinations won’t be back.  She is still sleeping all night and most of the day.  I expected them to fire up last night.  They didn’t.  I expect them to fire up tonight.  I am assuming that Mary Ann is just adjusting to the lower dose of Seroquel, that she will sleep off the transition and return to the cycle of sleep days followed by hallucination days.

She got up pretty early, was up for about an hour and a half this morning, and went back to bed.  While she was up, she took pills and ate a good breakfast.  She was calm and lucid.  She says very little when she is up.

She was up again early this afternoon. I got her dressed. She ate a good amount of food for lunch.  Again, she was calm and lucid.  She lay down after an hour or so.  As has been so every day since last Saturday there was some intestinal activity, sometimes almost as difficult to handle as Saturday’s problem. Other than that, the care issues have been minimal.

At this moment it is a little before 7pm and she is still sleeping.  I am concerned about how much she is sleeping, but comforted that she is eating reasonably well at least at breakfast and lunch.  There is less production by her kidneys, but since she is sleeping so much, she is not taking in enough to produce much.  The color is okay.  I will certainly keep an eye on that.  If I get concerned, I will call Hospice to talk with the nurse.

Because she is lying down so much, when she does get up, she is vulnerable to fainting, but even that is not as bad as it has been at times.  I have done nothing much today, just waiting and watching.  I have the monitor on so that whenever I am back here at the computer I can see if she is stirring.  Otherwise I just go in and out and check to see that she is okay and ask if she wants to get up.

The only progress today is that I got a phone call in response to the fax that I sent.  The Nurse was clear that the Neurologist would still be available to deal with the Parkinson’s but not the Parkinson’s Dementia or any medicines used to treat the hallucinations (the primary symptom of Parkinson’s Disease Dementia).  I said nothing in response other than asking for clarification that he would still see us at our next scheduled appointment.  I asked if he would renew the Seroquel Prescription that he started prescribing about a decade ago.  She said that whatever Psychiatrist we  find should do that.  I have to say that everyone in the online Lewy Body Dementia Spouses group, as far as I can tell, uses a Neurologist and not a Psychiatrist to deal with their Loved Ones’ [LO] treatment and medications.  These are a few hundred folks who have been dealing with this disease, some for very many years.  Very many LO’s have hallucinations and delusions and sleep issues identical to Mary Ann’s.  Among them, the use of various medications including Seroquel works for some and not others.  There is no consistent pattern of treatments.

…She got up again at about 7:30pm to go to the bathroom and change into her pajamas.  Then she returned to bed.  I will wake her at 8:30pm or 9pm to give her the bedtime pills and see if she is hungry.

…I got her up to take pills at about 9:15pm.  She wanted to eat something and chose a single serving container of applesauce.  She lay back down as soon as she was done with the pills and the applesauce.

I did take a little time to sit on the deck this evening, reading some more of the book of meditations (titled Christ, My Companion) on the Prayer of St. Patrick (St. Patrick’s Breastplate).  The writer, Marilyn Chandler McEntyre, is an intelligent and spiritual writer who reflects good Biblical scholarship and an appreciation for the intricacies of the Physical Sciences.  That is a combination I especially appreciate.  It always helps tune my mental and spiritual receptors when I read in a woodland setting even if human-made, located in our backyard.  The trees, flowers, sounds of the waterfall, birds, and tonight, fireflies, all helped create access to my spirit.

I took a moment to go to the front of the house with my binoculars to bathe in the light of a bright perfectly round full moon, just rising from the horizon between two trees.  It is surprising just how much of the landscape on the moon becomes visible with good binoculars.  With such a bright full moon, I didn’t expect to see so many stars and planets, even a couple very close to the moon, still visible.

Mary Ann seems to be sleeping, but she is doing the jerking that I  have seen  more often lately.  I may just be seeing it more since she is sleeping more at the moment. I don’t know if what she is doing qualifies as Myoclonic Jerks, but even if they are, to my knowledge, it would make no difference in treatment.

I continue to wait for the hallucinations to begin again. I am getting spoiled by having time to rest.  I would be happy for them to take a long vacation and leave Mary Ann alone for a while.

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.

 

May 25, 2010

Been Dumped!

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , |
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I called this morning to find out how we should go about reducing the medication that seems to be making things worse.  Through his nurse, last week we were instructed to call back after a few days on the newly increased dosage of the Seroquel.  When she called back, she simply said that we needed to find a Psychiatrist to manage the dementia and the meds.  We have just been set adrift and are on our own.

This University of Kansas Neurologist specializing in Parkinson’s is the one on whom we have depended for about fifteen years now.  There are very few options where the kind of expertise needed to deal with Mary Ann’s complex version of Parkinson’s is available.  KU med center is one of the few places in the country.  None of the rest are close enough to do us any good.

I need to find out whether or not he is still willing to continue prescribing the medicines dealing with the motor issues associated with the Parkinson’s.  Then there are some meds that have impact on the dementia, but were prescribed by the Neurologist to deal with the Parkinson’s.  He also prescribed some of the meds that are intended exclusively to help with the dementia.  What happens when we need a refill?

When I asked during last week’s phone call if there were any Psychiatrist’s at the med center to whom we could be referred to manage the medication the nurse curtly told me that they were not taking new patients.

I have begun checking to find out if there is anyone here in this area who is competent in dealing with Lewy Body Dementia [LBD].  It is enough different from Alzheimer’s Dementia [AD], that it will not be adequate to simply be aware of the usual treatments for AD.  So far the responses seem confirm my impression that we are underserved in this area with good Psychiatric/Neurological care.

Whether rightly or wrongly, I have concluded that generally the medical community loses interest in folks in the later stages of life.  Hospice does a wonderful job of helping people during those years with end of life care.  They, however, are not in the business of treating the diseases that bring people to that point.

I will seek out the best care that I can locate here in this area and try to draw the best out of whomever she sees for care.  My goal remains to have the best quality of life possible for as long as possible in the face of a progressive disease process that we cannot stop.

I am apprehensive about how things will go now that we have discontinued the extra morning pill that seemed to make things worse.  It is a pretty powerful medicine.  Reducing it can have a negative impact.  Tonight Mary Ann seems unable to speak clearly — the words are slurred and pretty much unintelligible.  It is making the simplest communication very difficult.  It took a long time to determine that she wanted to sit up on the side of the bed and have some water.  When I gave her the water, she seemed unable to use the straw.  The years of experience giving people wine from a chalice during my active years as a Pastor came in handy as I helped her drink directly from the cup.

This morning Mary Ann got up very early again after a number of times up earlier in the night.  I actually can’t seem to remember how much sleep I got.  I did get to bed pretty early for me.  I think I got a little more between Mary Ann’s dreams.  She was again hallucinating constantly.  This morning she was actually pretty entertaining with some pretty silly comments.  She ate breakfast, then Bath Aide Zandra came.  She did not seem to do well and afterward was unclear that it was Zandra who had been here.

She napped a bit, rested with her head down some of the time.  Lunch was a little harder than usual to get accomplished.  Supper was tough since she just couldn’t hold her head and the upper part of her body up for me to feed her.  Holding her up and feeding her is really very difficult to do.  When we finished, she had eaten a fair amount of meatloaf, if little else.

Volunteer Tamara came this evening while I got to the grocery store.  It has been tough to get out lately even to do the basics.  Mary Ann is now in bed, but she seems to be having trouble settling.

I am dreading the task of finding competent medical care, developing a good working relationship with him/her, and adjusting to whatever changes in medications and treatments may be involved.  It is hard to walk into a new situation in which I bring 23years of intense study on this particular patient, but those with whom I am sharing come with the confidence that they are the experts whose decisions must be accepted as the final word after a few minutes of conversation.  We have been spoiled by having doctors who have listened well and communicated well.

I am looking for some good to come from this transition.  It often happens that paths we would not have chosen bring us to a better place than we might have gone otherwise.  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.

 

May 22, 2010

Perfect Storm Damages Resolve

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
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Can it get tougher?  Apparently so.  Those who read this regularly must be getting awfully tired of hearing about the list of problems Mary Ann is dealing with and my complaining about their impact on me.  I debated even about writing a post today. It was ugly and messy.  My reaction was noisy and complaining.  There was absolutely nothing entertaining about today’s perfect storm of problems converging at one time. There is no resolution in sight.

Each of the elements of this perfect storm by itself is enough for Mary Ann and me to deal with.  I will describe again the ones relevant to this meteorological marvel.

One element:  Mary Ann has had Parkinson’s Disease for more than 23 years.  The medication of choice for Parkinson’s is a form of L-dopa.  The brand name is Sinamet.  That is the only effective medication for providing mobility.  Without it, Mary Ann stiffens and becomes rigid from head to toe.  After years of taking Sinamet, a side effect is wavy involuntary movements of body, arms and legs (as seen when Michael J. Fox is in the public eye).  Those movements are called dyskinesias.  The result is legs twisting together, body shifting one way and another, arms moving this way and that.

Another element:  People with Parkinson’s Disease develop problems with the functioning of the Autonomic Nervous System [ANS), the part of the brain that runs a whole list of activities in our bodies, activities that happen without conscious intervention.  In a small percentage of those with Parkinson’s, the ANS’s ability to quickly constrict blood vessels when they stand up keeping their blood pressure high enough to make sure that the brain gets enough oxygen no longer remains consistently able to do so.  That means the person affected gets dizzy at best and loses consciousness at worst.  Mary Ann has won the unfortunate privilege of having a severe and erratic version of that problem.

Another element:  Again, only a moderate percentage of those with Parkinson’s Disease develop Parkinson’s Disease Dementia.  There seems not to be a clear and consistent assessment of the percent of folks who move on to the dementia. This form of dementia is a form of Dementia with Lewy Bodies.  While there is no good dementia, it is a particularly insidious form of dementia.  More than memory issues, it is about visual hallucinations, delusions of all sorts, and vivid dreams that cease to be differentiated from reality.  There are few available in the way of medications that control the symptoms.  Most that might do so ultimately make the symptoms worse.

Another element:  One of the problems that comes with Parkinson’s is bladder activity.  There is the need for many trips to the bathroom day and night.  Because of the movement problems that come with Parkinson’s, help is needed when using the bathroom or bedside commode.  Another of the problems that come with Parkinson’s is sleep issues, the ability to get to sleep, stay asleep, disturbing dreams that interrupt sleep.  Another problem is that those with dementia often hallucinate most at night.  The combination of those problems is that those with Parkinson’s and those who care for them often have sleepless nights.

Another element:  One of the central non-motor problems with those suffering from Parkinson’s is constipation, intestinal issues.  The ANS not only runs the smooth muscles around the arteries, but the smooth muscles that move food and waste through the alimentary canal.  Those muscles slow reducing the natural ability of the intestines and colon to move things along.  Miralax and Senna are the tools of choice needed for Mary Ann to keep her insides running.  The result is not always orderly when finally there is activity.

Now to the Perfect Storm.  We have had two sleepless nights in a row, hallucinating has gone wild, morning, noon and night.  Just as we headed into the bathroom, the dyskinetic movements kicked in with a vengeance.  Then came the horrifying last element of the perfect storm.  There was soft and nasty matter that ended up spread on her back side and legs from her waste (on shirt) to her ankles.  My job was to clean her while she was popping up (the dementia – no matter how many times or how loudly I asked her to stay seated), fainting again and again, legs twisting and crossing and rubbing against one another when sitting or standing (with me using all the strength I could muster against her leg muscles to keep them apart), again, while trying to clean her up. There was another bout later in the day — not as bad, but not too far from it.

The hallucinations are still continuing tonight.  She has been hallucinating all day.  A short time ago I had two trips into the bedroom trying to convince her that it is time to go to bed, not get up.  Four minutes after the second trip in, finally convincing her that it is dark out, time to be in bed, she got up trying to get ready to go to church.  Last night once I woke to her sitting on the side of the bed yelling “help” and when I sat next to her she said someone was going to rape her.  This morning she woke me as she was sitting on the side of the bed crying, describing her beating at the hands of a policewoman who kept pounding on her.  I am afraid that the images from all those Law and Order episodes are folding into her hallucinations. I have been in at least a dozen times in the last hour or so.

Even though we had difficult nights, the the last two nights, this morning I managed to sleep while she napped for a couple of hours.  The perfect storm came right after that nap.  I was completely exhausted physically and mentally after the major bathroom battle.  Everything hurts, muscles, gut and mind.

These events are hacking at my resolve, my commitment to see this through to the end here at the house.  I am disappointed in my own seeming inability to handle this, but more horrified at the thought of not keeping my commitment to caring for Mary Ann at home.  I don’t want her not to be here, so that resolve is not just for her sake.

I wrote a bit on my dilemma in an email to the online Lewy Body Dementia Spouses’ group (many of whom have had much more difficult situations than mine).  One response was simply this little poetic piece:

who knows who knows
what do you do
when you break your commitment
or it breaks you

For now, I am taking some small comfort that while what happened this morning took me far past my ability to cope, I still did it.  I had to.  I am still alive, in some more pain than I care to have, but alive.  …and, for that matter, so is Mary Ann, alive and clean — still hallucinating in a steady stream.  I doubt there will be much sleep in this house tonight.

One reminder to those who wonder that you don’t hear from me (a retired pastor) glowing words about my faith life making this task easier to endure. Nowhere does there come any promise that life will be easy, that we will feel less pain, experience less frustration, because of our trust in our Maker and the One who healed our relationship with that Maker and the One who inspires us with His Power.  My faith is not weakened by my human weakness.  Instead, the One who does the healing retains the power.  I am all the more grateful that the healed relationship does not depend on my strength, but His.  His strength, my weakness.  That is the heart of the message of the Cross.

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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