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February 2, 2010

Two Nights of Sleep!

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

 

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

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

 

January 27, 2010

Hallucinations Leave the House

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , |
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I thought I would check to see if Mary Ann had any hallucinations at Bible Study this morning, away from home.  She told me that there was a twenty-one  year old walking around the room during Bible Study, behind the ladies sitting across the table from her.  I am fairly sure it is very unlikely that there was anyone walking aroud the room they were in, but I will check with someone in the crew to be sure.

I just checked and found out that she did ask quietly of Mary (schedules Volunteers and was sitting next to her),  “Who is that girl over there?”  There was no girl.  Gratefully, Mary knows our situation well.  Mary added that Mary Ann stuck her tongue out at her when she asked if Mary Ann had taken her medicine.  That is the Mary Ann I know!

I just read another post by one of the folks in the online group of Caregiving LBD Spouses.  She mentioned the problem with her Loved One blaming all sorts of things on the imagined people.  It is a paranoid delusion in his case.  Many of those in the group describe their Loved Ones saying often that “they” are doing this or that.  I suppose it is likely that this problem will grow at our house as time goes by.

Mary Ann napped for a couple of hours after lunch.  The hallucinations have continued.  They tended to be seeing something that was there, but seeing it to be something it wasn’t. 

Barb came and spent the evening with Mary Ann.  Again, I ran an errand or two and then came back to the house to spend time in my office listening to music and reading a new book that I hope will have a positive impact on my physical well-being.  That is a concern for any Caregiver who needs to stay healthy to be able to continue to fulfill the responsibilities.  There simply is no room for health problems.  (As if any of us could control what does or does not happen in that regard.)

I am heading to bed early in hopes that tonight will be a better night. 

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 26, 2010

It Was Only Water

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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It was only a cup of water, but it was 3:48am, and it ended up all over Mary Ann, and the bed and the floor between our beds.  The bed spread, bottom sheet and mattress pad were soaked in places. Everything needed a clean and dry replacement.

Those who are in the Caregiving Spouses of those with some form of Lewy Body Disease Yahoo Group would recognize this to be tiny on the scale of messes they have to deal with routinely.  It is just that it was one of those nights with rampant hallucinations, lots of times in need of my help throughout the night.  I had asked again and again for her just to stay in bed, since otherwise there would be no hope of sleep.  She decided to get up and get the water for herself from the bed stand.

I won’t deny feeling pretty annoyed, but I got things changed and put her back in bed.  There were additional needs increasing as we got closer to morning.  She was up early, in need of food and pills.  Needless to say, it is midday; she is napping; and I am, as usual, wide awake and sitting here at the computer (after having fed the birds, of course).

Before the troublesome night, I had thought today might be the day we could take in a movie.  It is almost 3pm and Mary Ann is still sleeping.  I asked her about the possibility of getting up when I gave her the last round of pills.  I hung around for a while talking with her about getting up, but she wasn’t ready to do so.  I am grateful to have most of last evening’s PT’s coffee refill left this morning, so I am avoiding the ugly caffeine withdrawal headache.

She finally got up around 4pm, ate lunch and began watching some television.  The hallucinations continue.  I had hoped that she would sleep them off with the long nap.  Just moments ago she fell in the bedroom but did not hurt herself.  As I was getting her up, I could see in her eyes that she was seeing someone.  She whispered that there is a man in the living room.  She insisted that I hide the coin jar on her dresser.  When I got her back into bed, she asked me to tell him to go to bed.  This morning, at one point she told me that there was someone in his bed, correcting herself quickly that is was my bde the person was in.  I wondered if it was another fleeting moment of the Capgras Delusion, thinking that I was a substitute.  By the way, that delusion was the basis for the Body Snatcher movies.

I just saw on the monitor that she was getting up.  I rushed in and she said she had something to tell Pete.  I told her that I am Pete.  I asked her if sometimes she thought I was an imposter.  She didn’t answer that clearly.  Then she talked about the people again.  She said, “Now they are eating here.”  She told me that the children were standing at the rail around the opening to the stairs to the basement.  That spot was about ten or twelve feet from the bed where we were standing.  She said the dad was in the kitchen making food.  I asked if there was a Mom, a wife.  She said that of course there was.  She did not say whether or not at that moment she could see her.  It is no wonder she has a hard time sleeping with all those people around.

Volunteer Patrice came over for a couple of hours this evening giving me a chance to run a couple of errands and begin a much needed clean up of my office.

It seems likely that we are in for another night with lots of interruptions.  I am now thinking about going over to the Hospice House Administrative office to check on the option of Mary Ann staying a night there.  They have an Adult daycare program in one building and offer rooms in the Hospice House for occasional night time care (having nothing to do with the Hospice program itself) at a reasonable (I think) cost.  If there are too many sleepless nights in a row, I will need to have an option for getting some sleep.  I will take Mary Ann along so that she can see what the rooms are like.  It is a beautiful place in a lovely setting.  As pleasant as the setting is, it may not be a workable option.  If she is not comfortable with the situation, I will not be able to sleep at home knowing she is distressed.  That would then defeat the purpose.

For now I am just hoping for a decent night’s sleep some time soon.

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

 

January 24, 2010

Couch Potato Day

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , |
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“Let’s do something special today,” Mary Ann said when we were out doing her breakfast and pills.  I asked what she had in mind.  She had no more words available or, I suppose, specific thoughts behind them. 

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

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

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

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

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

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

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

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

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

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

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

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

 

January 16, 2010

Get Over It!!!!!!!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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Maybe it’s Lori’s Chocolate Chip cookies (see yesterday’s post) doing their anti-depressant wonders.  Maybe it is having an almost normal (for us) night’s sleep.  Maybe it is reading yesterday’s post in the morning — late in the evening it is easy to become pensive and full of self-pity.  Maybe it is the dramatic contrast of all that we in our household have compared to the pain and suffering of tens of thousands in Haiti in the aftermath of the earthquake.  Maybe it is just getting tired of hearing myself whine.

Whatever it is, I need clarify for myself and any who follow this blog, that what I am feeling in regard to my change of circumstances from Senior Pastor of a large, thriving congregation to the full time primary Caregiver of my wife Mary Ann is just experiencing to the full the dynamics that come along with any major change in life.  There is a letting go of the past and settling in to a new set of present circumstances.

What I am experiencing in letting go of the past has nothing to do with the congregation from which I retired.  In fact, if anything, the wonderfully nurturing and loving people, the caring and competent Staff that actually served as my primary support group during the very toughest time trying to work full time and care for Mary Ann, the generosity of the Leadership of the congregation, the Volunteers (as many as 65 of them at one time) who stayed with Mary Ann all the time I was working away from the house (sometimes staying with her when I needed time to work at home), the Volunteers who have continued to stay with Mary Ann at times for a year and a half now since I retired from being their Pastor, the huge cadre of people there who threw the most fantastic party imaginable when I retired, all of that kindness just dramatizes the contrast between that part of my life and this part of my life.

Would it have been easier if they had all been mean and ugly to me?  I suppose in one sense it might have made me want to get out of there.  I have often reminded people who were hurting after the loss of a loved one, missing them so much, that their pain is a sign of the depth of their love for the one they have lost.  In that sense, I am grateful for every moment of gut-grieving.  It validates the value of the years of service in the church.  It reveals the depth of love for so many over the decades.  It is one way my gut reminds me that those years were good years.

Then, there is the truth of the matter.  No one asked me to retire.  There was plenty of reason as I struggled to do justice to the ministry and give Mary Ann the care she needed, for the leadership to say to me, “Don’t you think it is time for you to retire?” Instead, they said, “What can we do to help?”  I am the one who chose to retire.  It was without a shred of doubt exactly the right thing to do for me, for Mary Ann, for the Congregation and for the Lord who granted me an easy and certain decision-making process.

My struggles now are just the living out of that decision, the living through of the transition from one career to another, one identity to another.  What the whining in these posts reveals is the ugly underbelly of a very ordinary, flawed, self-absorbed, sinful (the Biblical word for such things) somebody going through that transition.  On the positive side of it, I am convinced that the journey will be completed more quickly and completely by allowing the ugliness to emerge without sugar-coating it — naming it for what it is.  That way it is less likely to sneak up later and cause some unpleasant and unexpected consequences — at least that is the hope.

I have always marveled at the enormous power and generosity of God to be able to and to choose to use people like me to actually do stuff to accomplish God’s goals on this clump of dirt on which we all live.  As those of us in the business know and will (hopefully) admit, most of what God does is not so much done through us as it is in spite of us.

Mind you the recognition of what I have been doing recently in these posts, and my own charge to “get over it” does not carry with it a promise that I will no longer whine and complain.  Why on earth do you think I am writing this blog!  It is so that I will have a place to whine and complain.  What I do hope and pray is that what I am experiencing and my reflections on it, the processing of the feelings will provide some bit of comfort to others who sometimes think they are going crazy, can’t go on any longer, are the only ones feeling that way, aren’t as good and nice as they should be, are failing to meet their own expectations.

What I hope is that other Caregivers who read this will understand that they have a harder job than anyone who hasn’ t done it realizes, that what they are doing has as much value as anything anyone has ever done no matter how important it might seem in the public forum, and that their lives have a depth of meaning they might never have found without the privilege of caring for another human being who needs them and whom they love deeply.

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

 

January 4, 2010

Eagle Watching Respite

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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I could hardly believe my eyes, but there they were.  Trees filled with American Bald Eagles and some Ospreys.  I counted.  There were between eighteen and twenty of them spread out in four different trees.  It was breath-taking.

They were gathered for a lunch of fish and fowl.  They were gathered not far from the spillway of a very large lake.  When the water comes through the spillway into the river, it brings with it fish.  The Eagles were fishing.  There were as many as four of them in the air at a time, dipping down to try to grab a fish.

There were also around 150 ducks of mixed variety gathered on the water in that same area.  The ducks were aware that they could make the banquet table just as easily as the fish.  It was actually comical to watch — probably not funny to the ducks.  When an Eagle got too close to one of the duck, the duck would do just that, duck.  It would pop underwater for a moment.

I was captivated with the scene for as much as an hour and a half while a Volunteer was at the house with Mary Ann.  This was not actually a day to be out and about.  We got a few inches of dry snow on top of the nine inches we got during the Christmas Eve blizzard.  It has been cold enough that all the snow is still here.  The streets melted some, but dry snow on top of refrozen melting ice made for some treacherous driving.

As I drove out to the lake and back, there were eight to ten cars in the median or off to the side in the ditch.  Many of the cars still had people in them.  When I left, I had intended on going to a couple of my favorite spots by the lake to check for birds.  I was dressed to be able to get out and walk if I chose to do so.  As I traveled there, it became clear that there would be a risk in getting off the main road on to areas that had not yet been cleared.  While a four-wheel drive vehicle would have made it more possible to get to those spots, there was something else that dominated my thinking.

Were I to slide off into a spot I could not get out of, there would be a long wait for help.  There were no other cars in on the roads around the lake.  I was making new tracks in some of the roads I was already traveling.  If I were tied up for any length of time waiting for help, it would complicate the day for Mary Ann and the Volunteer.  Any risks I take are not just about me.  They are about Mary Ann.  She cannot be by herself.  If I am not available to be with her, it would be no small task to keep her secure.  Gratefully, Mary (who schedules the Volunteers) would make phone calls until she found Volunteers to stay with Mary Ann.   Bad roads also impact Volunteers.  They are not necessarily able to get out with ease themselves.

As a result of those concerns, I was extremely cautious.  I found a spot on the road across the dam.  There is a great view from the top of the dam.  The spot was right above the spillway.  Snow was falling lightly, the sun was just a light spot in the clouds.  With the snow covering the ground it was very bright.  The panorama of frozen snow-covered lake on one side and the expansive view of the landscape through the lightly falling snow the other side was as beautiful as it was peaceful.

I listened to music as the car ran to keep me comfortable, and I watched the scene below.  The last of the music was some Russian Orthodox liturgical music.  It was as if I was in a bright white cathedral filled with the presence of God.  After so many days contained by the four walls of a small townhome, it was a wonderfully refreshing respite.

Mary Ann seemed to do pretty well today.  We watched the Kansas City Chiefs win, a rare treat.  Mary Ann went to bed fairly early, but she has been watching television while lying in bed for about two and a half hours now.  There is no sign of her going to sleep yet.

We chose to stay in tonight.  The weather is predicted to continue to be far colder than usual here.  The combination of the snow cover and temperatures heading to below zero later in the week are testing our mettle.  Our Northern Illinois roots help us from being completely intimidated, but what the wheel chair adds to the complexity of getting in and out of a car and in and out of parking lots and in and out of sometimes heavy and/or awkward doors with threshholds that can provide barriers others would never notice, all makes us think twice about going out in cold and snowy weather.

At least it looks pretty outside!

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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