February 6, 2010

Sometimes No News is Good News

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I will log today as a good day.  It was uneventful, gratefully so.  There were no dramatic hallucinations.  Last night provided a decent amount of sleep.   The times up during the night were not too many.  We slept late enough to compensate for the sleep lost during the commode trips and shifts in bed. 

The morning was spectacularly beautiful since we had 3.3 inches of fluffy snow.  The branches and twigs were so full of snow that it was falliing steadily in large clumps for part of the morning.  The Homes Association cleared the streets and sidewalks.  Our job was just to enjoy it.

Mary Ann ate her normal breakfast with the morning pills.  She watched some television and looked through her new Martha Stewart magazine (a newly received gift subscription).  I read emails from the Kansas Birders and the Lewy Body Dementia Spouses group.  There was some interesting material, an article on Seroquel and halluciantions — helpful information. 

After a sandwich, chips and Pepsi, Mary Ann was content to return to the magazine and the television, while I shoveled the deck to make room for more seed for the birds, cleaned out the birdbath, filled a feeder, spread birdseed and picked up the mail. 

I actually made supper, ham steak smothered in homemade green tomato relish, baked sweet potatoes with butter and brown sugar and some canned corn.  Mary Ann ate fairly well, especially after she relented and allowed me to help get the food in her mouth.

I offered get some Baskin & Robbins ice cream, and she accepted.  Of course, out of the goodness of my heart I got some for me to eat also just to keep her company.  She was struggling some to get manage eating the ice cream, but she would not allow me to help.  She did finally finish all of it. 

The ice cream that late in the day pushed bedtime an hour or so later than usual.  It is probably too much to hope for, but it would be nice to have another uneventful night. 

I did cut her second dose of Midodrine in half, in hopes that her blood pressure might move a little lower.  I haven’t checked it today. 

 I will accept today as a good no news day.   As for tonight and tomorrow,  they are mysteries yet to unfold. 

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

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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.

 

February 3, 2010

Dinner and a Show

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , |
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Well, lunch and a movie.  The day began with Mary Ann’s Bible study group at church.  She got up early enough to make it, and the report was that she was alert and engaged and communicative during the class. As we were about to leave, she wondered if she should stay home, since she might have one of her attacks.  She was referring to the times of intense hallucinations.  I said I thought we should not give that experience the power to decide for us what we should do.  I checked with her to confirm that she truly has not been having hallucinations in the last couple of days.

After the class we went out to eat a place called called New City Cafe.  They have great food, done in a catering style.  The customer orders at a long case with the plates of food already prepared.  Mary Ann loves the Seafood Tortellini.  It is also easier for her to eat than most foods.  She was not moving well and, to my surprise, was willing to let me feed it to her.  She has done it with ice cream but very rarely in a regular restaurant. We were in a very exposed location.

After eating, we drove over to the theater and found a feature of Avatar that was about to begin.  She reluctantly agreed to that movie.  I have wanted to see it in a theater on a large screen since the PR on it suggested that the visuals are impressive.  That certainly was so.  The music and colors of the fantasy world breathtaking, especially with the 3-D glasses.  Mary Ann tried the glasses, but did not like them. She watched it without them.  When I took them off the image was not clear, but she seemed okay with it.

Her opinion of it was that it was a glorified Star Trek (which for me is a good thing)..  She was decidedly unimpressed.  I found it very entertaining.  The story line was the same as every other action movie.  There are very good guys and very bad guys.  The bad guys hurt the good guys and then — you had better go see the movie to find out.  It was just a very imaginative use of technology to create a powerful visual experience.  It was fun to imagine riding on the backs of those odd pterodactyl-like creatures as they flew among floating mountains.

After the movie we came home.  At that point the day was the best we have had in weeks.  The good news is that Mary Ann seems to be adjusting to the increased dosage of Seroquel.  The bad news is that Mary Ann seems to be adjusting to the increased dosage of Seroquel.

She was able to get up earlier today without struggling to awaken.  She was alert, no hint of sedation.  That was an improvement.  She insisted that she needed to do something with the turkey (small whole turkey, I think) she had in the fridge.  There was, of course, no turkey.  She has had that in her mind before a couple of times when it was not so.  I can’t remember ever other than Thanksgiving or Christmas having a turkey in the fridge or freezer.

Then she asked me about her trip to Wyoming. It was real wasn’t it?  That was one of her hallucination/delusions last week.  She asked about the word from Allen, was that real.  Her memory of that information was more than the simple relaying of well-wishes via a third party email.  I asked about some of the other hallucinations she had had.  She did not remember them (jail, Alaska).  She did remember some of the hallucinations about her Grandma, talking almost as if she believed her Grandma was still alive. The hallucinations seem to lie just on the edge of her reality.  I hope the medication helps keep them on the other side of that edge.

Tonight, she took her night time meds about three hours ago.  She has been needed my help three or four times, and seems to be having difficulty settling down.  I hope she continues to sleep well.  When she does not, the hallucinations fire up.

During the first half of the day I was exhilirated by how well she was doing. It seemed as if I had her back. I hoped that we would continue to have good quality time for a long time to come.  This afternoon deflated any illusion that we now had the problems at bay.  While reality has made itself known, hope has not left.  Sunday morning seemed to reset my understanding of what is happening here.  I remain determined to get the best quality out of each day and at the same time I am fully aware of the inevitable.  We choose not to let the inevitable become a reality any sooner than absolutely necessary.  We choose to give it no more power than it actually has.

 

February 2, 2010

Two Nights of Sleep!

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Again last night she slept from around 8pm to 9am this morning.  She was very sleepy, but she got up for pills and food before Bath Aide Zandra arrived.  Zandra chuckled that she seemed to sleep through the shower, hairwash and dressing time.

While Mary Ann was with Zandra, a friend from our Kansas City crew of friends of some 35 years called just to check in and provide some words of concern and support.  It helps to know there are people who are aware and concerned.  There are so many who are in difficult times, many worse than ours by far.  A word of support to someone you know can make a difference.

After her time with Zandra, Mary Ann sat in her chair, head down, dozing more until I got her to the table for lunch at about 1pm. She ate reasonably well at lunch.  When she eats on her own with no help, it takes her almost an hour to eat a meal.  Then she watched television for an hour before we took a trip out that we have been waiting at least a year and a half or two years to take.  The nearby Baskin & Robbins that closed then, has been remodeled and enlarged. It opened today!!!

Mary Ann had two scoops in a cup, Gold Medal Ribbon and Peanut Butter and Chocolate.  I ordered what I have been planning for weeks to have the first day it opened, a Hot Fudge Sundae made with Nutty Coconut ice Cream.   Yes it was as good as always.  Mary Ann allowed me to feed her the ice cream even though we were in public.  Ice Cream trumps pride.

I assured the owners that I would be one of their best marketing people.  I had met the owners when we were forced to drive to the other side of town to get our Baskin & Robbins fix when the one close to us closed.  They now own both franchises.  Owner Steve mentioned that the day or so before, he had been outside the new store when someone drove by, opened her window and yelled out that her old Pastor was excited about them opening.  That would be me!  Maybe, if I play my cards right, there will be a free dishes of ice cream for Mary Ann and me some time.  I am not counting on it.  They are likely to need every penny they can find to make this work.  I seem to remember hearing that ice cream places have generally fared well during the downturn in the economy.  I may be wrong about that, but it would not surprise me.

After we returned home, Mary Ann sat in her chair and moved back into dozing position.  She did grab a large stuffed frog that Becky and Chloe had brought for her Saturday night.  Our Daughter, Lisa, who supervised the building of a state of the art dementia building at a large CCRC (multi-layer of care facility for the older population) she helped administer, mentioned to them that sometimes it helped residents with dementia to hold a stuffed animal on their lap.  It helped keep them from trying to get up and it gave them something to hold on to.  Mary Ann hung on to the frog and it ended up serving as a place on which to rest her head.

Mary Ann ate supper by herself, another bowl of the meatball, sauerkraut, and veggie soup.  She went in to get changed for bed shortly after eating.  She has now had her meds and seems to be sleeping soundly.

The last two days have been easier caregiving days for me.  I still would like for her to be more active during the day so that we could get out and do some things.  I get out some when Volunteers are here, but that does not get her out and active.

I am still sort of reeling from last weeks craziness, and certainly do not want to risk repeating it.  At the same time, I want her to have the best quality of life possible at each point in her trip with this disease as a passenger. I will give this medication time for her body to adjust, then look at the possibility of reducing the dosage some to see if she can be more alert without triggering the hyperactivity and hallucinations.

My motives are at one level selfish.  I have a need to feel good about myself, to have purpose and fulfill that purpose successfully.  For those selfish needs to be met, I need to provide Mary Ann the best possible experience.  What is good for her fulfills my selfish need.  I also do love her very much, and it hurts my insides when she is not okay.  In addition I was raised in a family that holds honor and honesty in high regard.  Our last name can be traced back centuries, Norman originally, settling in Cornwall England. I have a great, great…Grandfather who was a hero of the Revolutionary War. We pass his sword from oldest son to oldest son. It is in my oldest brother’s closet.  Our ancestral Coat of Arms has written on it “Honor and Honesty.”  All that is to say, I keep my promises.  Mary Ann and I meant our marriage vows.

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 1, 2010

I Will Not Surrender!

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , , |
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This morning I thought the increased dosage of Seroquel had gone too far and put her into a sort of drug-induced stupor.  She was sleeping so deeply.  She would not arouse.  She had hardly moved a muscle all night other than two commode trips.  Yes, I wanted to get some sleep, but not at that cost.  I would rather endure the rampant hallucinations than lose her completely into some distant world out of touch with reality, with who she is.

At that point I decided that unless things changed dramatically, I would call the doctor and do everything in my power to find a way to reset her medication regimen completely — take it all away (medicine vacation) and re-introduce only what is absolutely necessary monitoring side effects with each addition.  Some of the meds can produce hallucinations.  I would do it at home or in the hospital or wherever necessary.  I refuse to concede anything to this disease other than what absolutely must be accepted.

As I did morning preparations for the time that Sunday morning Volunteer Edie would arrive, I tried to awaken her a couple of times so that she could be dressed and have eaten and taken her pills.  Her hair needed washing after the last few difficult days.  She was just sleeping too soundly to get up.

I headed up to the lake after Edie settled in with instructions for giving meds.  I assumed that when I returned, Mary Ann would most likely still be in that same deep sleep.

As I drove the half hour to my spot by the dam, I put on a CD done by Lisa Kelly from the Celtic Woman group.  Her voice has a very engaging timbre.  Most of the songs were ones that I had heard and enjoyed before.  When I settled in by the lake, no eagles in sight at that time, the music and my image of Mary Ann in that deep sleep, began to burrow in.  For some reason, even though well-rested from last night’s virtually uninterrupted sleep, it all began to well up.  It surprised me at that moment to hear a song I would not have expected on a commercial CD for the general public.  The title is “The Deer’s Cry” from a movie called The Pilgrim.

I arise today
Through the strength of heaven:
Light of sun,
Radiance of moon,
Splendour of fire,
Speed of lightning,
Swiftness of wind,
Depth of sea,
Stability of earth,
Firmness of rock.

I arise to-day
Through God’s strength to pilot me:
God’s eyes to look before me,
God’s wisdom to guide me,
God’s way to lie before me,
God’s shield to protect me,
From all who shall wish me ill,
Afar and anear,
Alone and in a multitude.

Against every cruel merciless power that may oppose my body and soul
Christ with me, Christ before me, Christ behind me,
Christ in me, Christ beneath me, Christ above me,
Christ on my right, Christ on my left,
Christ when I lie down,
Christ when I sit down,
Christ when I arise,
Christ to shield me,
Christ in the heart of every one who thinks of me,
Christ in the mouth of every one who speaks of me.

I arise to-day

I am not embarrassed by this, but it has happened only four or five times since I was a child.  I have teared up, I have gotten choked up, but this morning I cried out loud. I just couldn’t stop. I was sitting in the car in the parking lot hoping no one would drive in and stop, as people often do since it is such a beautiful spot.

I don’t want to analyze all the whats and wherefores of what happened.  It was a deeply personal moment.  Writing it here risks trivailizing it.  I hesitated talk about it here, but it was too important to me for me to write about today honestly and not reveal it.  It just happened. I was overwhelmed with the vision of Mary Ann being lost in her own body.  She deserves more!

I refuse to be complicit in any way in treatments that make it easier to care for her at the cost of her being fully present to whatever degree possilble.  If I need to have paid help her overnight to be able to endure challenging behavior, so be it.  I wlll not lose her until the disease process itself takes her from me.

Yes, I am angry at this damn disease!  I don’t blame God.  The words of St. Patrick’s Breastplate in that song are what broke open the tears.  I sometimes forget how much I need what I sought to tell others all those years.  I am angry at myself for beginning too soon to accept losing her .

The recent decline and move into dementia has happened too fast.  Yes, sometimes declines happen so slowly that they are not noticed until they cross a certain threshold.  That can create the illusion that the change has happened quickly.  I remember a Neurologist in a Webinar saying that Parkinson’s progresses slowly.  If a change happens fast, it is not the Parkinson’s.  Something else must be the cause.  Lewy Body Dementia can change back and forth between getting better and getting worse quickly,  This decline and the increase in hallucinations has moved at a pace that suggests the need to look carefully, especially at the medications to see what other explanations there might be for the rapidity of the change.

I will accept only what must be accepted and will concede nothing more!  I am tired of just taking what comes and accepting as inevitable every decline.  While we choose to live in a certain denial day by day, I have no illusions about the general course of this disease. If anything, I know too much about what lies ahead, having read emails from other Caregivers struggling with this same disease in their families.

When I returned from the lake, I walked in the door to see Mary Ann sitting in her chair with Edie sitting next to her.  They were talking.  Mary Ann had gotten up shortly after I left.  She had taken her pills and eaten a good breakfast. She had drunk lots of liquids.  I had noted the color of Mary Ann’s urine in the commode this morning suggesting she might be getting dehydrated.  She had had a good BM (a big deal).  She had asked Edie about her new Grandchild.  She wanted to hear more about the baby.  She tracked the conversation, smiled and laughed at appropriate times.

After Edie left, we ate lunch — a sauerkraut and meatball soup that both Mary Ann and I love.  After much prodding, Mary Ann allowed me to help her eat. As a result she ate a good quantity of the soup and bread.  She had a big piece of carrot cake.  Not too much later she asked for and ate a bowl of ice cream.

She and I watched television for the rest of the afternoon.  She probably wondered what was going on since I did more hugging and telling her I love her than has happened in a while.  Neither of us is very demonstrative.  This morning messed up my controls for a while.

I got ready for the Evening Service, got things in the car, the garage door open.  I had been talking about going to church, as usual.  I put her shoes on.  She was tired and had been sitting there with her head hanging in her lap, napping.  When it was time to get in the car, she just was not willing to go out.

I gave her some supper.  Then she went right to bed.  She has now had her pills and is in bed, moving around a lot. I will be heading in soon.  Even though last night was a wonderfully sleep-filled night and today was a good day, tonight and tomorrow could be completely different.  We can take nothing for granted.  It will take some time to process all that happened today.  I am out of breath from 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.

 

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 30, 2010

Dream World Takes Over Night

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Mary Ann had vivid dreams all night long, waking often, sometimes only minutes after the last time up.  Even though she was up, each time her visual experience and awareness included whatever she was dreaming.  The people now had a baby.  She and they were in Alaska.  More than once when she awoke, she was in Alaska.  She was never here at the house sitting on her bed.  Each time I had to try to convince or just raise my voice and insist that she lie back down.  This went on throughout the entire night.

Of course, more than once she wanted to get up and get dressed — mostly to go back home.  Once I woke up with her sitting down on my bed almost on me, unaware of where she was.  When I woke at 7:15am (having been up with her at least two or three times an hour until 6:15am before that) she was sitting on the edge of her bed, pj’s off, determined to get dressed.  She, of course can’t do so without someone getting the clothes and putting them on her.

I got her dressed.  Then we went out for pills and breakfast.  She was doing lots of hallucinating during the course of that time, but they were more manageable than last night.

After eating, I left her at the table since she seemed settled there.  I asked if she was okay there while I took my shower and cleaned up.  She said yes.  I was glad she did since part of the reason for my leaving her sitting there is that the chair she is in is heavy and has arms, not allowing her to hop up and fall.  She has now been sitting at the table for over two hours.

She did manage to lose track of how she was holding her cup of ice water and ended up pouring it out on the table.  Much of the time she was sitting there she was making eating motions as if she was picking things up from the table and putting them in her mouth.  After a while she lay her head on the table.  I asked her a couple of times if she wanted to go in and lie down for a nap, saying that it would be better to nap earlier in the day than later.  Once she sort of snapped back that she was fine — the tone was, “just leave me alone.”

Her head has been up and down at various times.  I headed out to the dining room every ten minutes or so to ask if she needed anything.  She has stayed there all morning, always responding that she is fine..

County Health Nurse Linda came by and gave us out H1N1 flu shots.  Mary Ann was a little responsive to her.  Later I asked if she was hungry.  She said yes.  I reheated the half of a hamburger sandwich from yesterday and brought her Pepsi and chips.  She had her face pretty much in her plate and got a bite or two of the hamburger.  Each time I offered any sort of help, she refused it.

Then she dumped the Pepsi out on the table as she had her water earlier.  After cleaning it up, I got a cup that was left over from when our Granddaughters were here.  It is a small plastic cup with a tight lid and a large plastic straw that reduces the leakage should it go over.  That is now there for her to use.  She did drop in on her chair, but nothing leaked out.

Finally, after a long time of getting no food, I asked her if she wanted any of Mary’s Jello, Cool Whip and cottage cheese salad.  I brought it and asked if she would let me put the spoonfuls into her mouth.  She agreed.  At least she got some nourishment.

After a bathroom trip, she wanted to return to the table.  The television is on, a loud submarine war movie that sometimes catches her attention.  Her head is on the table at various times.  I continue to check on her and ask if she wants to move back to her transfer chair by the television (her usual spot) or lie down in the bedroom for a while.

Last night returned me to the edge of my capacity to handle Mary Ann’s needs here.  Once a few years ago, when discussing Mary Ann’s care needs with our daughter, Lisa, who served as an Administrator of a very large multi-level care facility for the older population (CCRC), she said that at that point already, her Mom would not qualify for a room in an Assisted Living facility.  She was already then past that point into full nursing home care.

The person I cared for last night would need to be in a locked Dementia wing.  I just came back from checking on her at the table, asking if she was okay there.  She said she would be there for a while.  I then went back and asked her where she was.  She answered, “Kansas City.”  Thinking she was just confusing Kansas City with where we live now since they are so close together, I asked if she was in our town, our house, sitting at our dining room table.  She looked around as if she was trying to figure that out, but did not answer.

Today I am looking at two options that seem unacceptable to me.  First of all, right now, this moment, what she is doing is something I can handle.  Last night’s experience would not be tolerable to me for more that a day or two, if that, certainly not for days and weeks and months and years.

At the same time, the thought of Mary Ann in a Dementia Unit all day and all night is intolerable to me.  At one point yesterday, she asked about my lunches with Jim and John the day before.  She was asleep all day. I had no idea she actually had a conscious awareness of those events (John’s was a coffee).  Then this morning when she seemed to be in hallucination mode, she asked what Jim had to say, referring to the lunch day before yesterday. If she was living completely in a world of hallucinations, it would be one thing.  She is back and forth.

Then, if she were to be in such a unit full time, I would not be able to tolerate leaving her alone for long periods of time.  The thought of spending most of the time, most days, in the Dementia Unit with her, is pretty tough to take.  I have been in Dementia wings, making calls on folks for a few decades, experiencing all that comes with such a place, even at best.

Add to that the loss of much of what we have worked hard over the years to save for our last years and for our kids is a tough pill to swallow.  If using most of those resources would provide a good quality of life for us it would be one thing.  The option it would provide is hardly that.

She ate only a few bites of supper.  She would not allow me to help.  With great difficulty I have now gotten Mary Ann to change for bed and lie down.  She has been completely convinced that she is not at home.  She has tried again and again this evening to get me to take her home.  We have walked around the inside of the house and to the front door.

I am going to check with the online group to see if others have had an increase in Seroquel do the opposite of its intended purpose of reducing hallucinations.  Again this evening, I had to be virtually at her side every minute, constantly trying to connect her with reality, almost completely unable to do so.

I wonder if there will be any sleep tonight.  At the moment I am not very hopeful about that.

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.

 

January 28, 2010

Hallucinations Continue to Increase

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

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

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

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

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

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

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

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

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

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

 

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