May 27, 2010

I Keep Waiting for Their Return

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

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

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

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

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

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

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

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

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

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

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

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

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

 

May 22, 2010

Perfect Storm Damages Resolve

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

May 16, 2010

Happy Birthday Mary Ann!

Posted by PeterT under Daily Challenges, Family, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , |
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Well, it wasn’t wild and crazy partying, but given our circumstances, it was okay.  After sleeping well last night, Mary Ann got up some time after 10am.  For some reason, when we were finishing with her pills and food (she was already dressed). I remembered a couple of music CD’s we had gotten when Occupational Therapist Karen was working with Mary Ann using rhythmic movements in her therapy.  It is a CD of big band music from the thirties and forties.  Even though we were not born until the early 1940’s, the music was part of our very early history.

I put the CD’s on and invited Mary Ann to dance.  As I have admitted before, I don’t dance.  I can, however, sway.  She laughed at me, as usual.  We stood for a minute or two of swaying/dancing before she fainted from the Orthostatic Hypotension (drop in blood pressure when standing) that has come from a combination of medicines and a compromised Autonomic Nervous System (due to both the Parkinson’s and the Parkinson’s Dementia).

Today did not include the option of going out anywhere since Mary Ann fainted every time she stood up — that is every time!  There was some intestinal activity, which always included a cluster of fainting spells.  I just hung close to her at all times.  If she just stood up in front of her chair to stretch her legs, she fell back into the chair and was out for a time.

In spite of that, the day went better than I thought it might.  She was awake most of the time.  She did not seem to be hallucinating very much at all.  She got good, long phone calls from both of the kids.  Daughter Lisa’s crew sang happy birthday, and both of the girls (5 and 7) had stories to tell about what was going on with them.  Mary Ann was able to respond a little to both Son Micah and Lisa.

My Sister, Gayle, phoned and sang happy birthday also, so Mary Ann got lots of attention.  There have been lots and lots of cards.  She now has a bank envelop with the words “for ice cream only” filled with a total of $60 in cash.  The bank teller wrote that note on the envelop in accord with the note on a $50 check.  I believe there will also be some Graeter’s ice cream from Louisville delivered when Lisa and her crew come to visit in June. That has to rank as one of the best in the world of ice cream.

Don and Edie came over again to deliver some flowers and visit for a few minutes.  Volunteer Coordinator Mary had brought over a bouquet yesterday.  Friend Jeanne called, widhed Mary Ann happy birthday, and arranged for a visit on Monday.

After eating a slice of Glory Days Pizza for lunch (left over), we each had a piece of rhubarb pie (Volunteer Coordinator Mary made it a couple of days ago using Mary Ann’s recipe).  Mary Ann’s piece, of course, had a couple of scoops of ice cream on it.

Mary Ann dozed for a while with her head down on the little table in front of her, but was awake most of the time.  The big band music was on for much of the time.  Later she lucked out and found a couple of episodes of “House,” followed by an NCIS marathon.  We went through birthday cards.  She was not as alert yesterday when I read some to her, so we went through them again.  She was much more alert today.

The wildlife was entertaining to both of us at various times.  Three very colorful Baltimore orioles were in and out of view for much of the day.  It was rainy outside, but only occasional sprinkles.

After some more leftovers for supper, we each had a big piece of the three layer melt-in-your mouth chocolate cake frosted with thick layers of whipped cream and coconut frosting.  I made a pot of Sumatra Badak Rhino Blue Tawar coffee from PT’s. It is a moderately dark roast that fit my taste perfectly.  Mary Ann is not much for the strong coffees that I enjoy.  She prefers Pepsi.

Today, I included the additional half tablet of Seroquel in the morning cluster of pills.  The Neurologist is suggesting we try that addition to see if it might help reduce the hallucinations.  It can cause her to sleep more of the time and increase the fainting, but the fainting had already started before she took her meds and long before the medicine could have gotten into her blood stream. She didn’t sleep as much as usual during the day today.  It is way too soon to draw any conclusions on the effect the increase in Seroquel might have.  Today she seemed to have minimal trouble with hallucinations and more fainting, but the medicine may have had no part in those characteristics of the day.

Mary Ann slept well and for a long time each of the last two nights.  I also have had two full nights of sleep.  I have absolutely no clue whether tonight will be a night of sleep or a night of hallucinations/delusions/dreams mixed with reality, up and down with no sleep for either of us.  I do know which I would prefer.

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

 

May 14, 2010

She Finally Crashed!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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After she settled around 9pm last evening, she slept soundly until 2pm this afternoon.  There was one interruption as the Hospice Aide tried to get her up for a shower.  She told the Aide she was too tired.  I agreed that she needed the sleep more than a shower.

When she got up at 2pm, after getting dressed, eating something and taking pills, she sat for a while.  After lying in bed so long, the Orthostatic Hypotension (fainting due to low blood pressure when standing) was really creating problems.  She had some healthy intestinal production, but fainted numerous times before, after and during that activity.

Every time she stood up she fainted.  Even so, she kept standing up again and again.  Eventually, she was fainting so much, I put her back into bed.  She slept for another hour or two.

This morning, shades for the sun room were installed (three of the four — one needed to be remade to fit better).  The activity did not bother Mary Ann.  Also, while she was sleeping, Volunteer Coordinator Mary, brought over some flowers for Mary Ann’s birthday tomorrow.  Mary arranged the flowers and put them in a vase.  At the same time that was happening, Landscaper Sheila, who had smelled leaking gas at the meter when she was working outside the last couple of days, phoned the Gas company to check for a leak.  The truck arrived and the Gas Service Worker checked and found a leak that will need a substantial repair. He put some tape on it for a temporary repair until the full repair is done in a couple of weeks. A new meter will be put in also.

Of course the new landscaping will be torn up and a Forsythia bush removed in the process.  Sheila will prepare the area and replant the bush when the time comes.

After Mary Ann’s nap, she got up in time to enjoy the meal that friends and former parishioners Don and Edie brought over at about 6pm.  Don was the cook.  It was a great meal.  Mary Ann was very tired and struggled to eat, even with my help.

During the afternoon, former parishioners John and Marilyn phoned and then brought over Marilyn’s traditional gift for Mary Ann.  It is a three layer chocolate cake with thick fluffy white frosting covered with coconut.  Because of the frosting it needs to be refrigerated.  The cake looks as if it would be almost too rich to eat, especially with frosting so thick.  On the contrary, it is very light, melting into wonderful waves of chocolaty gentle sweetness.

After the cake, Mary Ann seemed to drift into what looked almost as if she had fainted.  While Don and Edie cleaned up the kitchen, I got Mary Ann into bed for another nap.   Don and Edie and I talked for quite a while.  After they left, I got Mary Ann up to get her pajamas on and take her pills.  She is now back in bed.

The Parkinson’s Specialist’s Nurse and I connected this morning.  She reported that Dr. Pahwa suggests trying an additional half of a Seroquel pill in the morning in addition to her evening dose.  We are to try that for just a few days and call in to let him know what is happening.  The last time we increased the Seroquel, the dementia got very much worse for three days before there was the hoped for improvement.  From the way the suggestion was reported, I inferred that there is not much hope this will help and maybe some fear that the dementia will worsen — if that’s possible.

Last night because Mary Ann slept so well, I was able to get a full night’s sleep.  It sure felt good.  I am feeling greedy enough tonight to hope and pray for another night of sleep.  Whether or not that hope is realized and prayer answered remains to be seen.

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.

[Too tired to edit — publishing as is.]

 

May 13, 2010

Rollercoaster Ride is Stuck at Bottom of Dip

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , |
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There seems to be no end in sight to the constant hallucinating.  It continued last night until about 3:30am or so, and fired up again some time in the 6am to 7am range.  When she is awake, she demands constant attention since the her mind is driving her this way and that.  She is anxious to tell Daughter Lisa about the girls bringing a wagon from the downstairs to help her when she fell.  Mary Ann even described the worried look on Ashlyn’s face.  They are still at their home ten hours away in Louisville, Kentucky.

As usual, gratefully, she did lay her head on the table and settle there after getting dressed, breakfast and pills — hallucinating all the while.  The position she was in looked so uncomfortable.  After a time she decided that she did want to go in and lie down.

During her rest time, I finished moving all the firniture out of the way for today’s carpet cleaning.  I also managed to get hold of the Neurologist’s office.  The call was a little frustrating since the Nurse saw that we had not followed one of the Doctor’s suggestions in the chart from our last visit.  She was not aware that in that visit, the Doctor indicated that the suggestion to get a Psychiatric Evaluation of Mary Ann, was only an option if we were not satisfied with Dr. Pahwa’s choice of medications.  Since I am very aware that Dr. Pahwa is one of the best Parkinson’s Specialists around, I opted not to try to find someone less knowledgable in the area to suggest other drugs.  The other meds for hallucinations are more dangerous and less effective for the kind of dementia Mary Ann has.  Dr. Pahwa confirmed that he was only making the suggestion to provide a sort of second opinion.

The Nurse seemed quite frustrated that I had not done what the chart indicated had been one of the suggestion for us.  The chart listed the suggestions, but not the result of our conversation at the appointment.  She did agree to talk to the Neurologist.  Since we were away from the house on account of the carpet cleaning, I missed the return call.  Somehow I also missed the call on my cell phone.

I got Mary Ann up to get in the car and head out when the carpet cleaner came.  We met former parishioner Jay for lunch at McFarland’s Restaurant, where Mary Ann feels especially secure — and the food is good.  There are lots of folks our age and older who frequent the Restaurant.

We had a great conversation.  Mary Ann was really struggling to stay alert and functional.  Even with my help she wasn’t able to eat very much.  We sure seem to have lost a lot of ground.  It continues to appear that it is not a temporary decline, but a new location on the ride.

After lunch, we tried to go home since Mary Ann was so tired.  The carpet was still too wet for us to go into the house.  We went over to the church from which I retired to use the bathroom, since I thought it would be quiet enough that I could take her into the women’s rest room without fear of interruption.

Then I broke down and took her for ice cream to Baskin & Robbins.  It was uncomfortable, but I will get over that.  The ice cream was good.

The next stop did not go well.  I drove to the grocery store.  We went in and gathered a number of items.  When we were about two thirds of the way done with our list, Mary Ann said she had to go to the bathroom for serious business.  They have no family bathrooms, but very active Men’s and Women’s rooms.  Since it was major business, I could not just ask someone to take her in.

It would have taken too long to try to check out with what we had before leaving to go home and use our well-equpped bathroom.  I took the cart to the Service Desk, told someone there that I would be back for it, and we high-tailed it home.  Things went fine there, but afterward, Mary Ann had to lie down and nap.  There was no way I could get her back to the store.  With the potential for bathroom needs and a store because of construction almost fifteen minutes away, I could not leave her there while I drove back, got the rest of our items, checked out and drove home.

In our world, nothing is easy.  Volunteer Coordinator Mary came to our rescue.  She has helped with groceries before and offered to help whenever she could.  I called her and asked her for help.  She immediately offered to pick up the groceries, stopping by the house to get the coupons and the rest of the list.  She quickly called back to offer to stay with Mary Ann while I went back and finished shopping if that would work better for me.  That is the option I chose.  It turned what had felt very frustrating and distressing into a few moments away to in a relaxed way get the task completed. At the store they had been thoughtful enough to put in a cooler the items in the cart that needed to be refrigerated.

When I returned, I thought Mary Ann would still be sleeping, and just need to be changed for bed to complete the night.  She wanted to get up for a while.  She needed something to eat.  All through the time she she was up and then eating she was lacing her reality into the reality visible to me.  Since going to bed, she has been hallucinating some.  There is not clear evidence yet as to whether this will be a night of sleep or of multiple interruptions by the hallucination/delusions and dreams mixed with reality.

One thing is certain.  I need to get to bed soon so that I at lease have a chance of getting some sleep.

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

 

May 13, 2010

Half a Night is Better than None

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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She finally stopped sitting up with a new hallucination/delusion/dream filling her reality some time before 3am.  This was my 6:30am morning to arise and get ready for the 7:30am Spiritual Formation group, so I didn’t gain a full half-night’s sleep. It still helped some.  The Group conversation is always very helpful in the matter of maintaining some sort of equilibrium (a hard thing to come by lately).

Mary Ann slept through until Bath Aide Zandra came to do her morning prep.  That allowed me the full time in the group conversation without needing to leave to do a support task for Mary Ann.

By the time Zandra left, Landcaper Sheila and a helper came to so some major work around the street side, as well as the entrance area at the side of the house continuing to the back deck.  She is constructing it to provide a rich palette of color and texture with an eye toward winter scape elements.  Since we are not in a position to get out much, we are bringing a stimulating environment into view from every window of the house.  There are plants that will invite butterflies and hummingbirds in the mix, many that bloom all season long, some that mark the movement of the seasons, some that strengthen the sense of seclusion in the waterfall area.

Having something very engaging drawing attention that used different psychic muscles from those tapped in the caregiving tasks seemed to help.  Mary Ann was not experiencing the same level of intensity in that has made the last couple of days so difficult, and she rested in her chair without hopping up as much as has been the recent pattern.  I was able to go out and check on the project, enjoying the prospect of seeing all the flowers blooming in months to come.

Mary Ann rode with me to get Glory Days Pizza slices for lunch.  Just before Volunteer Coordinator Mary came to stay with Mary Ann for two and a half hours, she lay down for a nap.  While Mary was at the house, I was able to spend time over a cup of coffee with friend and former parishioner John in conversation.  It was helpful just to have the time away, as well as having a listening ear to bend.  John does a good job of listening, and giving appropriate feedback without presuming to be able to fix the situation.

While I was gone, Mary made that rhubarb pie that Mary Ann and I both love very much (mentioned in an earlier post).  It was great to enjoy a piece of that pie after a supper of Lasagna from the freezer that Daughter Lisa had prepared one of the last times she visited, along with fresh asparagus from the country market. Mary brought a beef, potatoes and veggie dinner that we can heat up tomorrow.

Sometime in midday, we received a reminder phone call that our annual carpet cleaning is tomorrow.  We had gotten a reminder post card a week ago, so it should have been no surprise.  Since my mind has been so dominated by the escalating frustration of reaching and passing for a time the ability to handle the intensity of Mary Ann’s needs, it just didn’t register that I needed to get the furniture out of the house, and figure out where to go while the carpets are cleaned and then given time to dry.  In fact I had accepted the offer of a very caring former parishioner who has treated us with great respect, to bring us coffee tomorrow afternoon for a visit.

Gratefully, Jay was willing to meet us for lunch at McFarland’s Restaurant, a place where Mary Ann feels very comfortable.  That alternative also provided a place to be during the carpet cleaning.  We still need to figure out where to go for a while as they dry.  The issue is always finding an accessible place with a bathroom situation that allows me to help Mary Ann.

While I am certainly not at my best at the moment in terms of stamina, I was able this evening to get much of the furniture moved out of the way (downstairs or into the garage).  I am hoping that the one who comes to clean will be willing to help move a table a few feet off the carpet and into the sun room area.

There has been no progress today on contacting the Neurologist about the possibility of increasing dosage of the medication that is supposed to reduce hallucinations (while unfortunately increasing the daytime sleeping and the vulnerability to fainting spells).  The day was active enough that I just didn’t get it done.  I have not yet received a report from the Hospice Social Worker about the possibility of some paid help to cover a morning or two in the week.  Those two things are important since they offer the possibility of actually making a difference in our situation.

I hesitate to say it for fear things will change any minute, but so far tonight, Mary Ann has just had a few needs for turning in bed and using the commode.  She has been in bed for about two and a half hours.  It has been storming loudly off and on for most of that time.  The storms are expected to last almost until morning.  Right now they are noisy but not dangerous. They don’t seem to be bothering her.

As I finished that last paragraph, she started moving.  When I went in, she wanted to get up and go home.  Then I offered her a snack, since she had eaten very little for supper other than the pie.  As I fed her she moved into a very odd sort of mode that made it very difficult to feed her.  She was bouncing as if she was starting to get up.  She did that a couple of times when I had the spoon at her mouth.  At a couple of points it seemed as if she was partially fainting.  After I finally got the last of the applesauce into her mouth, she started bouncing as if trying to get up.  When I asked what she was going to do she didn’t know. I laid her back down and she began talking about everyone getting up and leaving.

Clearly, I spoke too soon.  Judging from her current state of mind, it is reasonable to expect another difficult night.  It is just not getting any better.  I keep thinking we will make it through this round of hallucinating and have a couple of days of sleep with minimal hallucinating interspersed with lucidity.  She is moving back into a pretty intense mode of hallucinations and delusions.  I just hope I can keep her in bed as much as possible, again hoping and praying that she will just fall asleep for the rest of the night.  It is now about 12:15am.

I had better finish this and get bed on the outside chance that there will be some sleeping fitted in before morning.

 

May 11, 2010

She Never Wore Out! The Whole Night!

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , |
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I suppose last night ranks as one of the worst nights we have had.  Mary Ann kept sitting up and responding to hallucinations and delusions and dreams that were her reality at the moment when she sat up.  Each time it was brand new and  real to her.  She seemed to have no awareness that five or ten minutes before there had been a completely different reality to which she was responding.

It just never stopped.  When I saw 3am come around, I hoped that then she might finally let go and sleep, as has happened in the past.  It just never stopped.  I suppose on occasion I slept as long as fifteen minutes when there was that much time between new encounters with her world.

Finally, not long after 6am, I simply could no longer convince her to stay in bed.  I gave up trying.  I turned off the alarm that was set for 7:45am to get her ready for her Bible Study and tried to figure out how to get her to stay secure while I showered.  I knew she wouldn’t stay put in her chair, but I got all her basic needs met, the television going, water nearby and just took the shower.

She was, of course on the floor when I came out.  I checked to see if she was hurt.  She was not.  I put a pillow under her head and let her stay there while I finished.  That way I knew she would be safe and secure.  She said she was comfortable.

Then I got her dressed and fed and ready to go to her Tuesday morning group.  Since she got up so early, she was ready about an hour early.  She continued to hallucinate, but finally lay her head on the little table in front of her chair.  It is hard to describe the sense of relief that came with Mary Ann dozing and ceasing being driven by hallucinations and delusions and living dreams., constantly demanding my full attention.  I was able to get my own breakfast, the wash started, clean the commode, make beds and get things in the van so that I could awaken her and get her to her group on time.

I have admitted before, and I do so again, that this expression of the Parkinson’s Disease Dementia puts me in direct contact with the outer limits of my capacity to endure this Caregiving role here at home.  I am disappointed that I can’t handle it with grace and endurance.  Actually, this expression of Mary Ann’s disease puts me in contact with those outer limits from the other side of my capacity to cope.

There was a last minute bathroom trip, but we did make it to her Bible Study group. She apparently rested some but did all right at the group meeting.

After the meeting we stopped to pick up her favorite steak soup and lemon meringue pie.  I wasn’t sure she would be able to eat, since she had her head down and seemed to be dozing all the while we were in the van.  I did feed her some of the soup and pie.

As soon as that was done we had to get to appointments I had made for us with the Optometrist.  Considering the Hospice trajectory and the fact that a recent visit to an Ophthalmologist (M.D. eye doctor) had revealed that her vision problems are neurological, not mechanical, I wondered about how appropriate it was for Mary Ann to get new glasses.  I decided to ask her if she wanted the appointment so that future possibilities did not determine present action.  Whatever she wanted to do was fine with me.  When we got there, she was just too tired to keep her eyes open for an exam.  She slept with her head on her lap in the waiting room, while my eyes were examined.

My prescription had changed quite a bit in the five years since I last bought glasses.  The cataracts are just in the beginning stages.  My Dad had glaucoma, so I was interested that the eye pressure had increased — not enough to be certain it is a problem.  There was one unsettling observation.  One eye has a hint of the possibility of Macular Degeneration beginning.  I know too many who suffer much from that mostly untreatable condition to look forward to that potentiality.

We got home just in time for Hospice Nurse Emily’s weekly visit.  For her records and my need to share, I describe the last couple of days and admitted that I need help.  I asked her to help me come up with alternatives.  She said that she would call Hospice Social Worker Kristen, since she is the one with the resource information.  Emily took Mary Ann’s vitals, blood pressure at 200/108 — relevant information when considering whether to resume the medication that raises BP to help reduce the fainting spells (see yesterday’s post on our dilemma in that regard).

While Nurse Emily was taking Mary Ann’s vitals, the phone rang.  It was Hospice Social Worker Kristen asking if she could come over to do her monthly visit.  Emily had not yet phoned her.  Interesting timing.

Shortly after Emily left, Kristin arrived.  She got the full and detailed description of the last two days and our medication dilemma.  I was, of course, doing my usual opening of the verbal safety valve by which I survive.  I told her that I planned to phone the Neurologist to see whether he recommends increasing the Seroquel.  I can handle the sleeping (of which she does too much) but I cannot handle the streaming hallucinations for very long, especially when they remove the option of sleep.  The Seroquel’s purpose is to help diminish hallucinations, but it increases the sleep time.  Again, it is a matter of survival.

For her part, Kristen said she would check with a team of four who do some private pay help for other Hospice clients.  The cost per hour is significantly less than the Agency help we now use sometimes.  Because of the unpredictability of the night time needs, we talked about the possibility of one or two mornings a week on a regular basis.  I could use the time to sleep, if that is what is needed, or just get away.  Adding that to the wonderful gift of Volunteers from church who fill slots of time when they are available to do so, might help bring this task back into my range of ability to handle it.

Even at the lower rate, the cost will be challenging.  After the last couple of days, it doesn’t seem to be an option to try to continue without more help.  This evening already, Mary Ann has been hallucinating, requiring trips to the bedroom to explain again and again that it is not morning but evening, it is Tuesday, not Wednesday, there are no painters here.  As I said in last night’s post, I say again tonight, I hope at some point she wears down and goes to sleep for the rest of the night.  She may have napped enough today to gain a second wind.  I have not napped and have no second wind, or, for that matter, any of the first wind left.

It helped to talk with the Hospice folks this afternoon, as well as some of the church Staff this morning after I took Mary Ann to her group.  One thing has become apparent to me.  I do a lot of talking and blogging and meditating and celebrating the natural beauty that is now in view at our house.  Those things help me process what is going on, keep things in perspective, vent some of my feelings.  All of that is very good.  It does not, however change the harsh realities of the difficulty of this task.  None of those tools magically creates super human powers that allow me to handle whatever comes.  I am still a painfully ordinary someone, far too selfish, irritable, whining way too much, with limited stamina and strength.  It is time to figure out a way to get more help.  I am still committed to doing this here at our home.

For now, it continues to appear that tonight will be a repeat of last 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.

 

May 11, 2010

Between a Rock and a Hard Place

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , |
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Almost every moment Mary Ann was awake today, I was never sure who she was seeing or where she thought we were.  She talked to people, the little girl, her Mother.  She whispered to me that there was some woman standing “right there” inside the van when I was trying to give her some medicine.  In the car after coming out of Perkin’s Restaurant, she asked why “he” gave directions to Laramie (Wyoming, the state in which her estranged brother lives).

That is the rock.  The hard place includes two things.  One is that she has continued to faint often.  There are times during the day when it seems more likely, but it can happen any time.  They often result in a subsequent nap.  That is the second thing of the two things in the hard place.  She has slept during much of the day many days.

The medication of choice to control hallucinations is Seroquel.  The most prominent side effect is that it causes drowsiness and can result in lots of sleeping, day or night.  Another concern the Neurologist mentioned is that Seroquel increases the vulnerability to fainting due to low blood pressure (orthostatic hypotension).  By increasing the dosage of Seroquel, the other problems worsen.   If we reduce the Seroquel, the hallucinations would be likely to increase.

As I have mentioned many times before, the medicine that is used to keep blood pressure up, reducing the fainting keeps her blood pressure at a dangerously high level.  Today in the Dermatologist’s office her BP was 208/93.  That is without taking the med to raise her BP so that she faints less often.

We turn one way and face up against the rock.  When we turn the other way, we face up against the hard place. It is a difficult spot in which to remain for very long without beginning to tire of it.

Because of the unique character of Parkinson’s Disease Dementia/Lewy Body Dementia, there is a sensitivity to sedative type medications that precludes the use of any but a very few.  The choices are very limited.  The problem with trying other meds for hallucinations to see if they will work is that the sensitivity of LBD and PDD results in losses that cannot be regained.  We can’t just try things for a while.  Mary Ann is now on the medications that are most recommended for treating the problems caused by PDD/LBD.

This spot between a rock and a hard place seems to be the place we will be living for the indefinite future.  We choose to live in an intentional state of denial, but it is not easy to maintain it.  While I always hope that the latest sign of decline is transitory and better times will return, it is beginning to seem that the better times are long gone.  The Neurologist of someone in the online LBD spouses group told her that some time her husband would have one of his fainting spells and just not come back. Sometimes having a support system that includes lots of information about the disease one is dealing with includes too much information.  Some things are better not to know.

I have rushed to the bedroom a dozen or two times as I have been writing the last few paragraphs.  Mary Ann is hallucinating and pretty adversarial and angry that I don’t respond appropriately to things that simply make sense to me or have no corporeal existence outside of Mary Ann’s mind.  I can only wait until, hopefully, she just wears out and goes to sleep.  She has been in and out of fainting most of the times I have gone to the bedroom to get her back into bed.  In fact she has been vocalizing some while fainting, sometimes acting in a belligerent way while in that state.

This morning I knew problems were beginning.  She was up a number of times very early, and when she could no longer stay in bed, she had that intensity that signals the beginning of the streaming hallucinations.  There was some fainting early on, but Bath Aide Zandra didn’t have problems with her.  After Zandra left, I got her breakfast and pills.  She sat in her chair for a while in pop up mode, but soon put her head down.  Finally, she wanted to lie down.

After lying down, I got her up to go to the Dermatologist appointment she has been asking about for a couple of weeks, often thinking it was the day of the appointment. She was concerned about some bumps she felt on her head.  There were no problems discovered.  The nurse asked Mary Ann what she was doing at one point.  Mary Ann said she was separating her fingers.  It was the thread or gold chain hallucination.

I just headed back to the bedroom again.  She asked if they served breakfast and lunch.  I confirmed that she thought it was a motel.  I tried to convince her that she was in her bedroom.  She responded angrily that I kept moving her from house to house.  I asked if she wanted some applesauce.  She said yes.  Then while I was getting it, she got up, walked around the end of the bed to the area between the beds and fell.  She did not hurt herself, but that spot is one from which it is almost impossible to extricate her.  The only alternative was to lift her straight up and on to the bed.  My back reminded me just how risky that move is.  That  area between the beds is too small to get the lift in and manage to put the sling around her.

I got her around to the side of the bed and started feeding her the applesauce.  She fainted, completely falling into me since I was sitting next to her.  Even when finally she was awake and ready to eat again, I had to hold her up and try to keep her hand away from her mouth so that I could get the applesauce in.  Sometimes when I am feeding her, she moves her hand to her mouth as if she is feeding herself.  I have to try to figure out how to get the food around her hand and into her mouth.  She gets irritated when I push her hand out of the way to get to her mouth.

I finally got her back into bed.  I am sure she will be up again soon.  Needless to say, this has not been one of our better days!  Here we go again — again demanding lifting and shifting and adjusting her in bed. Each time I have gone to help her there has been the same need for the physically demanding help.  This is another one of those times I am wondering how long I will last.

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

 

May 9, 2010

Quiet Mother’s Day — A Bit Pensive

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , |
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Mary Ann slept reasonably well after settling last night.  She got up and had breakfast, but afterward opted to remain in her pajamas.  After a time, she just started fainting in her chair.  We managed a trip to the bathroom once, but the second time she fainted in the transfer chair before I could get her on the stool.  She just needed to get back in bed.

While she slept, I did a bunch of simple household chores.  It struck me how much effort is necessary just to do the most basic tasks to maintain a household. That is hardly news to anyone who has had responsibility for those basic tasks.  Having grown up in a household in which Dad did outside stuff and Mom did inside stuff, it has taken a while for me to catch on.

I did manage some time watching the large screen nature show at the back of the house.  I need to correct the pronouns in my last post.  That Oriole is “she” not “he.”  I should have known since she was more yellow than I expected of a Baltimore Oriole.  Mr. Oriole appeared at the waterfall this morning.  He has not ventured to the jelly yet, at least when I have been watching.  Mrs. Oriole has spent a number of times there today.

Mary Ann got up in the early to mid-afternoon.  Given the choice of waiting an hour for me to make a bigger meal or having a sandwich then, she opted for ice cream. You will note that ice cream was not one of the options I suggested.  We both had some ice cream.  I put the baked potatoes in the oven, and after about an hour, I George Foremanned a couple of pieces of sirloin from Omaha Steaks I had marinating in the fridge and steamed a bunch of Asparagus. By the way, I absolutely HATE cleaning the George Foreman Grill!

After eating, Mary Ann watched some television.  Daughter Lisa phoned to wish Mary Ann a happy Mother’s Day and report that some items produced by our Granddaughters would be coming later.  Since we had eaten so late, it was not long before it was time to go to the Evening Service at church.  Mary Ann had forgotten that it was Sunday.  I got changed and we headed over to the Service.

Shortly after we got back, Mary Ann was ready to go to bed.  It is a very cool and gray evening.  I have stepped outside a few times just to take it in.  I prefer the days when Mary Ann is subdued and sleeps a lot to the ones when she is so intense and streaming hallucinations, delusions and dreams confused with reality.  At the same time, on occasion when she is sleeping, there are pensive moments during which I get a glimpse of what it might feel like to be alone.  There are lots and lots of people who have faced that challenge before me.  As any will testify, that there are others does not lessen the impact when it is you.

I choose not to remain long in the pensive times.  We live in a state of intentional denial.  We have enough to deal with in the present.  We will deal with future possibilities when they become the present.  For now, we have each other.  That is our reality.  It is enough.

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

 

May 6, 2010

“Have the Police gone yet?”

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , |
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I as sitting on the deck enjoying a beautiful evening after Mary Ann went to bed.  The video monitor was out there with me.  She started getting up, so I went in to see what she needed.  She asked if the police were gone.  As confused as I usually am when things come out of nowhere, I asked what they were here for.  She said there was a break-in and the copper tree had been taken.  That is a large metal wall sculpture that hangs in our living room.  Mary Ann was looking at the bedroom wall when she said it was missing.

I told her that the police had not been here, that she must have been dreaming, that there had been no break-in, that I was here the whole time, and that the tree is still hanging in the living room.  After we talked a while, she wanted to go out to the living room to see the tree.  We did so.

After getting her in bed again, I folded the chair and brought the monitor in from the deck and came back to the computer.  She started moving again.  This time she said she didn’t want to go to the hospital.  I asked her if something was wrong that she thought she might need to go to the hospital.  She said “they” told her to get dressed.  Then she said, “You know we were broken into.”

She decided to use the commode, but when she got on it, she didn’t need to use it.  She started talking in that fast sort of jibberish, but I recognized the word “organization.”  I repeated the word and she confirmed that is what she said, but there was nothing connected to the word that either of us could identify.  When I lifted her from the commode to transfer her back into the bed, she fainted.  After swinging her on to the bed, I eased her into a lying position.  I had to try to get her pajama bottoms back up when she came around and was awake again.  She wanted to go out into the living room to see what was going on.  We went out there and she fainted again.

I asked her if she wanted to sit in her chair in front of the television.  I thought that just maybe the television and living room setting might help her hang on to reality until she was tired enough to fall asleep and get through the REM cycle (where the dreams occur) into deeper sleep.  Before I could get her to her spot, she sort of fell asleep in her chair.  It was apparent that she would not be able to sit up on her own.

I got her back to bed.  Since then she had another dream that I was lying on top of someone.  All of this has happened in the span of about a half hour.  At this rate it will be an impossible night.  At the moment she is lying in bed, facing the television watching her very favorite program “House.”  My hope is that she will remain engaged in it for a while, just giving me a break so that I can finish this post.

Last night was better than the night before, but not wonderful.  She got up early and I set her up in front of the televsion so that I could get a little more sleep.  After I got showered and dressed. we took care of her pills, breakfast, got her dressed.  During that time, she seemed reasonably connected.  We talked more about yesterday morning’s angry accusation.  She seemed to have gotten past it, at least at that moment.

Shortly after breakfast, she asked to lie down.  She slept for three hours or so.  During that time friend Tim came by with a vase of irises for her.  Tim is husband to Volunteer Jan.  When Mary Ann woke up, she had her usual, fairly small lunch.  During the last of the time she was eating, she needed to use the bathroom.  After we returned to the table, I got her into the dining room chair to eat the last of the chips and have some Pepsi.  Then she just sort of switched off.  It was almost as if she had fainted but not completely.

… break to respond to Mary Ann.  She now thinks she is in the hospital, wondering what they are going to do to her.  Watching “House” may not be helping, but she was concerned about the hospital before that program came on.  She wants the television left on.

…back to lunch time today.  Since she just switched off, I took her back to bed.  She slept a few more hours.  She got up long enough for supper, but ate very little.  Neither did she want to go out for the Blizzard of the Month at Dairy Queen (Buster Bar Blizzard, fudge and peanuts mixed in ice cream), nor did she even take the offer of ice cream from the freezer.  Very soon, she wanted to go to bed again.  She was quiet for about an hour before the living dreams fired up.

Since she has slept so much today, she may very well be up and active most of the night.  I dread that thought. (I just made a trip to help her to the commode.)

On the positive side, I got some devotional reading done this afternoon as I sat on the deck.  Again this evening I had some more quiet time to relax on the deck.  Much of the time I was out there, the Mallard ducks were sitting in the waterfall.  At one point there was a little drama as the two all of a sudden high tailed it off one way as fast as they could waddle.  Soon there was another Drake coming from the opposite direction and heading after them.  The next time I went out there was a hen by herself in the waterfall.  By the way, the ducks, especially the hens, are almost completely invisible when they are in the waterfall and the greenery and rocks right around it.  Even though they are no more than twenty-five feet away and I know they are there, I need the binoculars to differentiate the hen from the background.

The Bluejays and Grackles are constantly busy, with doves and the occasional Cardinal, Robin or Sparrow joining in the activity when I am out there.  There is not much variety of birds, but the ones that are there are entertaining.  Again, there was a great breeze growing into wind at various times.  The sky was bright and blue with a few wispy clouds. The trees are almost in full leaf.  The green of the leaves and the newly mown grass has that spring vibrance.

…there she goes again.  Just a Tums.

At the moment, as I write, the window in my office is open so that I can enjoy the sound of the wind, the cool air coming in the window and the fairly mild episodes of thunder and lightning.  So far very little if any rain has fallen. The volume of the thunder is increasing, as is the number of lightning flashes.

…another Tums.  Television off.

I will finish editing and get to bed in hopes that it will help that I am in the room with her — I doubt it.

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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