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 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 23, 2010

The Hard Questions

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“How long do you intend to keep caring for Mary Ann at home?” he asked.  “Until I can’t handle it any more.” I answered.  Then the hardest of all, “How will you know when that time has come?”

Since we live in a world of denial that provides us the emotional and psychic room to live each day without constant dread, those questions are not often asked and answered.  First of all, I don’t know the answer.  I have intentions about how I intend for this story to end, but I have no answers to questions about how the future will actually play out.

Two days ago I was asked those questions with which I began this post.  Today I experienced to some degree elements of the answer I gave.  As I have said in earlier posts, my intention is for the two of us to stay together here at the house at least until one of us dies.  My intention is to use as many resources as I can locate and afford to help make that possible.  That intention is not just an intellectual decision about how I intend to proceed.  That intention lives in insides.

With that said, I had to answer the question rationally.  I intend for Mary Ann and me to be together here at the house until I can’t handle it any more.  The question that has to be addressed, the hard question is, how will I know when I can’t handle it any more.  I stumbled around some as I tried to answer that hard question.  The two things that came to mind are hallucinations that get out of hand and grow into a steady stream, and the inability to get any sleep.  The two are related.

Today was an example of those two problems converging.  Last night Mary Ann was up multiple times, as many as a half dozen in an hour.  Almost every one of those times, there were people, or raccoons or other visual images not actually present outside of her mind.  The lack of sleep during the night meant that the hallucinations came in a constant stream this morning when she got up.  She asked if we were the only ones in the house, implying that she thought we were not the only ones.

By the way, yesterday, as she was eating the last piece of strawberry-rhubarb pie with ice cream (pie she had eaten with great enthusiasm for the two days before), she decided that the filling in this last piece of pie had somehow changed into tomato sauce. She ate the ice cream, but left most of the huge piece of pie. I am afraid of the day when I can’t get her to eat enough food because of what her mind is seeing.

Today, she grabbed the bedspread as I was folding it at the foot of the bed preparing for her nap.  She said there was a sheet of stamps or stickers stuck to it.  The bedspread was right in front of our eyes, she had her hand on it, convinced that she was pulling off what was stuck on it.  She told me to turn on the bright lights on the ceiling fan over the bed so that I could see the sheet of stamps.  When the light went on, she reluctantly admitted that they were not there. On the way to the bedroom tonight, she stopped and told me to get rid of “that” and then stepped over something that was not there on the floor in front of her.

This morning, when the hallucinations were at their steadiest, Mary Ann simply could not sit down for more than a minute or some fraction thereof.  She would jump up to go to one spot or another to get a good look at or pick up whatever it was she saw.  I had to jump up every minute or fraction thereof to grab hold of her gait belt so that she did not fall.  Once she was so dyskinetic when she jumped up that it was all I could do to untangle her feet and help her sit back down before she fell into a couple of tables next to her.  The activity was so steady that I could do nothing but follow her from one hallucination to another, or one task she had in her mind to do, pretty much always losing track of whatever it was by the time we got wherever she was leading me.

If hallucinations came at that pace constantly, I would soon be completely unable to cope.  The lack of sleep impacts both of us.  The less she sleeps at night, the more she hallucinates, the stronger and more vivid and more frequent they become.  The less she sleeps, the less I sleep.  The less I sleep, the less able I am to cope with the hallucinations.  They compound one another, lack of sleep and hallucinations, and my capacity to cope.

Here is how my inability to cope expressed itself this morning.  I told Mary Ann that I had been asked about how long I could keep her at home.  I told her that my answer included two things that could make it impossible, lack of sleep and streaming hallucinations like the ones that we were dealing with this morning.  It was cruel to say that to her.  I have no excuse.  My frustrating inability to cope with the constant following her to one thing and then another, after having a very poor excuse for a night’s sleep was the context, but I chose to say those harsh words. She has Parkinson’s Disease Dementia!  She didn’t choose the disease!  She didn’t choose the hallucinations!  She didn’t choose the frustrating behavior!

I guess there was a part of me that hoped the words would get through to the healthy part of her mind that has some ability to control her actions.  What she said next, broke my heart.  “Then what would happen to me?”  Usually, whatever I say just bounces off with no reaction.  This time it broke through.

I need say just how hard it was to actually write for all to see those last paragraphs revealing what I said to her.  I am ashamed and embarrassed.  I can only hope that someone reading this post has been there and said things of which you are not proud also.  I have chosen to face my own flaws head on without pretense, since it is just too hard to pretend to be someone I am not. My hope is that facing the flaws head on, will allow me to grow into someone better able to cope, a better Caregiver.

In answer to Mary Ann’s question about what would happen to her, I immediately told her of my intention for us to stay here together until one of us dies.  I told her I would use paid help here at the house to help do the care when I could not handle it by myself.  I told her that if I die first the kids would take care of her, keeping her close to them.

All I wanted to do was to get her to stop hopping up, responding to the various things she saw. She did stop hopping up, and I was able to get my shower done, make the beds, write an email or two and finish getting her ready for the Public Health Nurse’s visit.  I don’t know if what I said had any impact in that change in behavior, but even if it did, I feel no less guilty about being so harsh.

It is at times like this that I am very grateful to have a God who has openly addressed our flaws and stolen from them the power to ward off the Lord’s love of us.  That is why the song is called “Amazing Grace.”  The power of that gracious love is transformational.  It frees us to face our failures.  At the same time it challenges us to grow and change, cradled in the arms of that love.

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 15, 2010

Trouble Processing Visual Images Continues

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“My supper is gone!”  Since she had not been eating for a while, I asked her if she was done.  Almost all the leftover Quiche from lunch was still there.  The fruit had not been touched.  She said her food was gone.  I turned the plate, pointed to the Quiche sitting there and asked if she saw it.  She said she did.

We had ended up at McFarland’s Restaurant for lunch because of the awkward fit of the retired pastor in the life of the parish from which he retired.  We attended the funeral of one of the people I respected most over the years.  Ann was 93.  Just imagine what she had seen in those 93 years.  In our tradition we do not canonize saints.  If we did, Ann would be one!  She and husband Maury, who died about ten years ago, had helped found the congregation in the late nineteen forties.  I remember a few visits with both of them at their home after I first arrived in the parish in 1996.  Ann was doing with Maury what I am now doing with Mary Ann.  She was doing it with much more grace and humble acceptance than I have demonstrated.  While wishing to spend time talking with the family and close friends, I was not comfortable inviting myself and Mary Ann to the meal provided for them.  With a little more of that gut grieving going on, we headed to McFarland’s for lunch.  I keep wondering how much of this sort of grieving the Pastor I followed suffered in silence without my ever knowing it.  Thinking about that helps me put into perspective what is just part of this step in the journey.  It also surfaces some guilt that I was not more sensitive to his place in life at that time.

The most exciting event that wound some joy and anticipation into that same gut was the gift of the most effective anti-depressant of which I am aware, Lori’s home made chocolate chip cookies — a huge container of dozens of them.  Lori’s thoughtfulness will provide some pleasure for days to come — actually longer if I get some into the freezer before we devour them all.

At McFarland’s Mary Ann worked on the Quiche she had ordered for a full hour after the food arrived at the table.  I offered to help in one way or another at various times, trying not to make her feel as if I was rushing her.  She would not accept any help.  She struggled to get pieces on the fork that were secure enough not to fall off on the way to her mouth.  Toward the end of the meal she did allow me to cut a large piece of watermelon that accompanied the Quiche into smaller pieces.

After that hour, she had eaten about 30% (at the most) of the Quiche and one small piece of the melon, none of the rest of the fruit on the plate.  Of course people had come and gone all around us.  The folks who sometimes come, eat, and play bridge were starting to play at the table next to us.

I left the tip, got Mary Ann into the wheel chair, gathered the take home container and her purse together so that we could pay the bill and head to the car.  When I put the check and the twenty dollar bill on the  counter in front of Walt McFarland, the Owner, he just wished us a Happy New Year and did not pick up the twenty.  He said it was on him.  It is surprising how powerful kind gestures can be when a person is stressed and struggling.  He carried our containers out to the car and opened the doors for us on the way there.  Mary Ann just can’t negotiate styrofoam containers without crushing them or losing them off her lap (understandably) as the chair moves.  As a result, I have the challenge of holding the styrofoam containers (leftover meal and left over Coke in a takeout cup), pushing and steering the wheel chair, getting the doors open and holding them open so that we can get out.  Walt is a good guy!

Mary Ann started trying to get up this morning at 4am.  Between then and about 8:30am there were the usual snacks, little plastic containers of applesauce and tapioca pudding, some commode trips, some arguing about my need for her to stay in bed so that I could accumulate enough sleep between tasks to function during the day.  When we got up, she was determined to make sure we got ready in time to attend the funeral.  She was alert about many things at that point, except that there were things she could not do by herself.  After getting her usual yogurt and cereal to eat with her pills, I wanted her to sit securely in her chair while I showered and dressed. She could not sit.  She was too determined to get ready to go.  She said I could take my shower while she got dressed.  She hasn’t been able to get dressed by herself in a number of years.  I got her completely ready to go, and finally she was willing to stay seated long enough for me to get ready.  We had plenty of time.  We were ready almost an hour before we needed to leave.  By the time we left, she had sort of shut down mentally and physically.  We were able to get to the funeral, but not without much difficulty.

When we got home after the meal, she was not tracking well.  I asked her if she needed to use the bathroom; she said yes.  I was trying to tranfer her from the chair to the toilet stool, and as she was standing up, she began reaching forward and down. I asked her what she was doing.  With a very irritated tone that I could not see what was so obvious to her, she said she was washing her hands.  I don’t remember what I said, but I managed to get her seated and afterward get her to the bed for a long nap.  Just before she awoke, I had opened and shut the front door, leading her to decide that she had missed Zach and Erin coming by with there new baby.  She had been dreaming and, as she admitted at that point, she can’t tell the difference between dreams and reality.  Later this evening she told me that she had just seen me smoking a cigarette.  Other than a few days in college almost fifty years ago, I have never smoked cigarettes.

This has been and continues to be and interesting time in our journey.  There seems to be some transitioning going on for both Mary Ann and me.  I am not sure to where we are transitioning, but I guess we will figure that out as time goes by.

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 12, 2010

Grieving Loss of Former Identity

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , |
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She started trying to get up for the day at 3:30am.  It was all I could do to convince her to lie down and stay in bed.  Every time she needed help of any sort after that, she tried to get up and head to the table for breakfast and pills.  Finally, some time before 7am she/we got up.  The usual happened.  By the time the Bath Aide left, she was dozing in her chair.  I got her to the bed and she slept about three hours. 

Yesterday morning (Sunday) there was a Volunteer with Mary Ann, so that I could have some respite time.  I went to the lake to check out the Eagles again.  There were only a few, and the river was frozen offering them nothing on which to prey.  It was still a spectacularly beautiful day with the snow cover and the bright sunlight. 

When I got home, someone had dropped off the new Pictorial Directory for the congregation from which I retired.  We are still members.  We worship in the Sunday Evening Service, since it is the most easily accessible for Mary Ann due to the lack of a crowd and the time of day.  That service also provides a lower profile for my presence as the former Pastor of the Congregation.  Having followed two long pastorates, I know what a welcome gift it is to a new Pastor to be given the opportunity to settle in without the former Pastor around vying for attention.  I was given that gift by the two pastors I followed earlier in my career. 

I looked through the new Pictorial Directory.  It seems to be well done.  There were folks pictured who have been members for  years and some who were new to me.  There were some who just come for the pictures, but no longer attend church.  There were many whom I have not seen in the year and a half since I retired because they attend the morning services.  I miss them.  Members become extended family to the Pastor, especially since so often the ministry involvement comes at times in their lives when there is a certain level of vulnerability.   

The front section of the Directory was filled with pictures of the Staff, both paid and volunteer.  There were classes and worship events and gatherings of all sorts pictured — group after group.  What was exactly as it should be was that, of course, I was not in any of them.  That fact is evidence that what I sought has happened.  The Congregation is going on without me.  It is being led by a very capable Pastor, who is doing effective ministry.  All is as it should be.

If that is so, why did my insides hurt so much yesterday afternoon?  The answer at one level is obvious.  I was just doing some more grieving.  The visual impact of the new Directory was the verification that I am no longer a factor in the life of the Congregation.  What I sought when I left has happened.  It is a good thing.  The necessary letting go is just hard to do. 

There is another level  of grief that was deeper.   Looking at the pages left me with the sensation that it was as if I had never been there.   Understand, the folks with whom I interact from the parish are always gracious.  My feelings are no different from those of anyone who has left a career to move on to something else.  Yesterday afternoon I thought about the Pastor I followed in this parish after almost thirty years of ministry.   I wonder if or how often John had those feelings of grief. 

What happens when most Pastors retire is that they continue to serve in their profession, just in other venues.  Circumstances have not allowed me to continue in my profession in any way.   As a result, Sunday afternoon was just another time of grieving the loss of a life long career, one that served to define my identity.  This is the sort of grief work that can only be done by the person who has experienced the loss. 

I guess I was surprised at the intensity of the feelings that were triggered on Sunday.  It helped to attend church later that evening and hear the Vision of the new Pastor and the Leadership for the future direction of the congregation.  I resonated with the assessment of the current need and the commitment to tools that can help meet that need.  The grief work I continue to do does not include any perception of losses in the health and quality of ministry at the congregation I no longer serve.   It is just doing the work of accepting that I no longer serve there.  

I now serve here at my house.  The need here is clear. 

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 7, 2010

Just Out of Sorts Today

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She looked over toward the walker leaning against the rail around the steps to the downstars.  She said she saw a cat.  Then she said maybe we should adopt it. 

At first I responded with the usual, “we don’t need the hassle of taking care of a cat.”  Then a little while later it dawned on me that there was a more appropriate response.  I told her that it would be fine with me if we adopted the cat she saw.  I don’t remember the exact wording, but it was something like “nice try.”  I added that it would be perfect since there would be no food to buy or litter box to clean.

There was another time that she was talking about something that I could not follow.  The hallucinations were not as constant as they were two days ago, but they were more present today than yesterday.  Yesterday especially, it was hard see her struggling so to track.  She wanted to make a list.  I got her a note pad and a pen.  She did write something about birthday cards.  (I have been trying to remember at the right time to phone one of my Brothers, whose birthday was January 3.)  There were a couple of scribbles after that, but when I offered to help in the writing, she got the sort of look that seemed to say, I have important things to write on the list, but I can’t get them into my mind. 

At those moments she is so helpless, and I am helpless to make any real difference.  So much of the time she has no words, then when they do come, she gets lost in what she was trying to say.  Sometimes what she says makes no sense, and she realizes it in mid sentence.  Other times she remembers things accurately and is right on with what she is saying. 

Maybe that is part of the reason.  Maybe it is the weather and the prospect of being homebound again for a few days.  Maybe I am just tired from the lack of an uninterrupted night’s sleep.  Maybe it is just getting tired of the constant demands of the task.  Maybe it is guilt over what I am not doing that I should be doing or the lack of patience with her.  Maybe it is the short days and long nights at this time of the year (Seasonal Affective Disorder).  I have just  felt out of sorts today.  I think Mary Ann has too.  I asked her if she was feeling goopy (technical medical term) or depressed.  I thought her lower lip was revealing that it might be so.  Her words did not confirm it.  She did decide to take a nap, indicating that she was tired.  It is hard to be sure about the lower lip sticking out as a non-verbal sign of sadness since that is one of the facial changes often brought on by Parkinson. 

Whatever is going on today in both of us, she is in bed and I am going to try to get to bed early tonight.  Maybe some extra sleep will help. 

By the way, those who read this blog and happen to be members of the parish from which I retired, let me clarify that my faith remains strong.  I have no doubt of the Lord’s love for me.   My future is certain and my purpose clear.  Even the Lord Himself experienced times he felt overwhelmed and needed to get away.  He got angry.  He cried.  He felt pain.  He expressed feelings of abandonment on the Cross.  It is a comfort to me that I don’t have to be afraid of my feelings however up or down they may be.  In fact my faith frees me not to run away from them.  I can own up to them, lean into them, experience them fully and move through them to the other side.  My relationship with the Lord is not sustained by my feelings one way or the other.  My relationship with the Lord is sustained by the Lord. 

I do not ask of those who read this blog that you share my faith.  I hope that what you read in these posts is helpful to you whatever your spirituality or lack thereof.  I share my faith on occasion because it is for me the key to my survival and the power that fills my life with meaning in the face of circumstances that seem bent on stealing our lives from us. 

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 5, 2010

Some Days are More Frustrating than Others.

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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I am not completely sure why.  Some things are harder to accept than others.  There is one visual cue that removes all my ability to keep things in perspective.  It takes me right up to the edge of my ability to cope, and then pushes me over.

There she was, half way across the bathroom, walking with her pants around her ankles.  I had stepped out for only moments to give her some privacy.  On the way out, I asked her to please remember to push the button when she was done and reminded her not to get up until I arrived to help her get up.  She did neither.

That visual cue seems to release my deepest fears that the next fall will be the last one.  It surfaces every feeling of frustration that comes when her choices seem to fight against the very help I am trying to provide.  That visual cue pushes me over the outer edge the confidence that I can care for her here at the house until the end.

I got her dressed, put her on the bed, and had to leave the room for five or ten minutes to gather my composure and try to regain perspective. I wonder if part of my reaction is a safety valve blowing off steam to keep the boiler from exploding.  I wonder if it isn’t a grieving process going on that I ignore until something like that visual cue shatters my illusion of control.  I wonder if part of it is my refusal to admit to myself just how hard this is.

Yesterday morning when I went outside to clear the drive and sidewalk of snow for the Volunteer, she tried to get up from her chair, fell and took with her the table in front of her, knocked the computer monitor to the floor along with a cup with some juice in it and a number of other things on the two tables around her.  She was lying in a heap among all of it. Gratefully, as always, she was not hurt at all.  I was upset that I couldn’t so much as go outside to shovel the sidewalk without her getting up, creating the vulnerability for a fall.  Then I felt responsible.  While she couldn’t remember why she got up, I had not gotten her a new box of Kleenex, I had not gotten her fresh water, I had not taken the audio receiver with me outside so that I could hear the electronic doorbell, which she would not have pushed anyway.  I realized again how hard it is to anticipate every impulse need and provide for it so that there will be no need to get up.  It is hard to anticipate and cover every impulse need of another person — one who cannot tell you those needs in words.

She has been having a difficult time keeping things clear the last couple of days.  There are flashes of lucidity, but most of the time, it the hallucinations have continued, verbal communication has been virtually gone, and there have been times of great confusion.  At supper tonight, after working on the baked potato on her plate for a long time, mostly with her fingers, I asked if she saw the meat.  She said no.  A large piece of meatloaf was there on the plate right next to the potato she had been working on. She has often been in eyes closed mode.  She will be acting in every other respect as if she is doing things normally, except that her eyes are slammed shut tightly.  Often when that happens and I ask her to open her eyes, she will answer that she can’t.  I have learned how to walk her from one place to another when her eyes won’t open.

I just came back from the bedroom.  Mary Ann had gotten up on the side of the bed.  She was trying to pick up needles that were not there.  As we were sitting there, a couple of times she told someone to stop pulling on the quilt hanging on the wall a few feet away.  She asked we how soon we would be getting out of here.  Then she asked how we were going to get all the furniture back.  I asked if she was thinking that we were in a different place from our home and that the furniture had been moved here.  She said yes. Like Capgras Syndrome, this is a Delusional misidentification syndrome.

I just went back again.  This time she asked me to take the girls out of the bedroom.  When I asked if they were our Granddaughters, she said no.

At the same time, earlier today when I mentioned the library, she suggested that we eat lunch there.  Since we couldn’t find a parking place, we at at Bobo’s Drive-in.  At the library, she managed to pick out two books from the large print section. We had sundaes at G’s after the library.  When we got home she ended up wanting a nap.  After an hour and a half, after taking medicine and using the bathroom, I took her out to watch television.  She got up and headed back to the bedroom to nap some more.I had to wake her up for supper.

Back again. She is just having a terrible time accepting that it is night and time to be in bed.  She wanted to get dressed this time.  It is about 12:15am at the moment.

I have just been with her a few more times.  The last time included a snack and a paper towel to wipe up something that was not there.  It is about 1am now.  I am wondering how much of the night will be spent with the delusions and hallucinations.  Last night we were up quite a number of times.  There has been very little sleeping in happening in the last week or so.  The interrupted sleep is not helping the coping skills, nor is it helping the delusions and hallucinations.

I am going to edit this now and get to bed in hopes that my presence will help.  There is no good reason to hope it will help, but I am too tired to stay up any longer.  I guess interrupted sleep is better than no 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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