May 19, 2010

She Slept Last Night

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I am not sure either of us would have survived another night of constant hallucinations.  She slept soundly last night.  This was my early morning, but it still felt good to have almost six hours of sleep.

Wednesdays are often very active days in our household.  Mary Ann slept through my time in the Spiritual Formation Group that meets here.  I got full advantage of another thought-provoking and nurturing time focused on the Presence of God in our lives.  The conversation was stimulating, meaningful and very engaging.

Bath Aide Zandra came shortly before the group time was concluded.  She had to awaken Mary Ann to do the morning prep tasks.  While Zandra was doing her task and our group was concluding, Parish Nurse Margaret came to spend some time with Mary Ann.

I chose to do the breakfast and pills with Mary Ann to maintain our routine.  Then as Margaret finished with Mary Ann’s toast, I started preparing for Kristie’s arrival.  Kristie does the monthly thorough cleaning, since I am all but useless at the task of house cleaning, especially the abhorrent task of dusting.  Kristie arrived just as I started the task of putting things away so that she could get to as many uncluttered surfaces as possible.

While Margaret stayed with Mary Ann and Kristie cleaned, I got a break to go and get more birdseed.  The little piggies are devouring seed at a phenomenal rate.  That is my part of the deal.  Their part is to provide us with hours of entertainment.  Yes, my feeding them is self-serving — but they do get something out of the deal.  Today is another rainy day, bringing lots of bird activity.  Unfortunately, there is evidence that the raccoon(s) have returned.  Unless a flock of birds came during the night and devoured a couple of pounds of seed, the cute but annoying little beasts are back.  Rather than messing with trapping, I plan to bring the feeders they bother into the house each night.  They can just argue with the possum over the seed in the platform feeder by the waterfall area.

Shortly after 1pm, a couple of folks came to talk about scheduling some paid time with Mary Ann on a regular basis.  This option came as a referral by Hospice Social Worker Kristin.  These folks are more reasonable than the Agency we use some times, and all of them are either licensed CNA’s or LPN’s who have had lots of experience with folks with Mary Ann’s sort of problems.  Glenna had served someone with Lewy Body Dementia and reviewed information about it on the Internet before coming to meet with us today.  We will begin with a Monday time the second week in June and just see what seems to be the most helpful.  She said that between her and three others like her, we should be able to get help on fairly short notice if needed.

Then at 2pm Volunteer Clarene came to be with Mary Ann for a couple of hours this afternoon.  At the same time former Parishioner Jay came by with a Latte for Mary Ann and coffee for me.  After we all talked for quite a while as Mary Ann was napping, Jay and I headed to PT’s just for some relaxed conversation (and more coffee).

Mary Ann spent a good deal of time today resting her head on the table.  When there was interaction, there seemed to be minimal evidence of hallucinating.  She napped in bed for a time this afternoon.  She was up for a bit when Clarene was with her and had a little more of the pizza I had gotten her for lunch.

After I returned we sat up together for a while, but she soon wanted to get changed for bed and lie down.  As always I don’t really know what to expect as to how the night will go.

As to the increase in the Seroquel, last night did not confirm that in Mary Ann’s case it increases hallucinations instead of reducing them.  The last increase many weeks ago produced a couple of bad days followed by some good days.  I would like for this increase now to produce some good days.  I am not even willing to hope that it will be so.  That sort of hope just sets me up for disappointment.  It is possible there will be some better days, but it doesn’t really seem very likely to me — possible, but not likely, that is tonight’s mantra.

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 19, 2010

2nd Tough Night and Morning

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Last night was a little more constant than the night before in the rampant hallucinations/delusions/dreams mixed with reality.  This morning was at least as tough as yesterday morning.  She speaks clearly and with a strong voice.  She can get up and walk on her own, and I just hang on to the gait belt, helpless to change her behavior as we move this way and that.

She got up very early, when i could no longer coerce her into staying in bed.  After breakfast and pills, she was up and running for an hour or so.  Then she went into the bedroom, with me tagging along, and decided to get back into bed.  I, of course, was completely wasted from two nights in a row.

We had an appointment with a quality control worker from Wichita to evaluate the care we are getting from the state agency through the local County office.  For us that meant evaluating our Case Worker and Bath Aide.  She arrived a short time after Mary Ann had gone back to bed.

When the Evaluator arrived, we went into the bedroom to see if Mary Ann was awake enough to participate.  Mary Ann said she would participate but was clearly unable to do so.  I explained that we had been up two nights in a row resulting in her needing the sleep.  The Evaluator asked if she was sick.  Admittedly, I was baffled by the question since she was here to Evaluate the people helping us because Mary Ann is debilitated.  I told her it was the Parkinson’s and the Dementia that were at issue.

The Evaluator got the information needed for the form.  She was pleasant and understanding, even though her initial question had seemed pretty silly to me.  In the course of the appointment, she asked if I would be getting any rest.  I said that while I usually don’t rest during the day, I would have to do so if there was one more night anything like the last two.

After she left, I did some chores.  I continued to think about the option of my getting some rest during the day.  I chose not to do the variety of things that I would normally do with the break provided by her sleeping.  I went in and lay down to allow myself the option of getting some rest while Mary Ann was sleeping.  I actually slept for a couple of hours.

The negative of sleeping when Mary Ann is sleeping is that I lose time that is free for me to spend on things of interest to me, helping me keep my sanity and get some perspective on the daily struggles.  It is hard when all my waking time is taken by the caregiving tasks themselves.  This has, however, come to be a matter of survival.  If there is any hope that I can keep doing this while the dementia is in full swing, I have to get some sleep.  I am hoping that I can manage to continue to use at least some of Mary Ann’s rest time as my rest time as well.  I have to relent on my intention to keep nights for sleeping and days for waking.  I have tried not to reverse those two.  I no longer seem to have a choice on that matter.

At least once before, I had decided that it was time to look at facilities that might be acceptable for Mary Ann’s full time care.  I am again at the point of considering at least getting enough information to be able to know where to turn if things get too much harder here.

Hospice Nurse Emily came for her weekly visit this afternoon.  Mary Ann had just gotten up from her nap (as had I).  I tried to feed Mary Ann some lunch, but she just couldn’t handle even the chips and Pepsi.  She could barely suck on the straw enough to get the Pepsi into her mouth.  She only managed a very few chips when I was able to get them into her mouth far enough for her auto pilot to kick in and the chewing start.

Mary Ann’s Vitals were good.  Her blood pressure was 124/74.  That is about as good a set of numbers as a person could have — of any age.  Needless to say, next time those numbers could be half again as high or a third lower (as in the last two times it was taken).  Emily agreed to call about the progress on the possibility of having some paid help through Hospice so that I could count on a certain time for R&R each week. Emily did make that call, and one of the Aides is coming tomorrow to talk about the possibility.

Mary Ann was up for a while, but subdued, mostly with her head down on the table.  Eventually, she headed in to take a nap.  She was not interested in supper.  When Volunteer Barb arrived to spend time with her this evening, I went to check on Mary Ann to see if she needed anything before I headed out for a while.  She wanted to change into her pajamas and stay in bed.

After I returned and Barb left I checked again on Mary Ann.  This time she did want supper.  I got her a left over pulled pork sandwich and chips.  She ate pretty well and then went back to bed.  I have no reason to think that tonight will be any different from the last two nights, but I can hope.

I did phone the Neurologist’s office and leave a message reporting on Mary Ann’s behavior since we are trying to decide if the addition (three mornings ago) of the morning half tablet of Seroquel is helping more than it is hurting.  At this point, I am not sure what I think about that.  It does seem as if the consistent level of the hallucinations the last two nights suggests the medicine is having a negative effect.  Tonight may confirm that, or just sustain the confusion about what the medicine is or is not doing.

In the time away this evening, I read another section in the book on St. Patrick’s Breastplate, by Marilyn McEntyre, the verse that says, “Christ to comfort and restore me.”  There is a poem included in that section, a poem that is fitting for those with or without a religious affiliation.  The poem was triggered by seeing an acre of valuable, arable land sink into the river.  It is “The Slip” by Wendell Barry:

The maker moves – in the unmade, stirring the water until – it clouds, dark beneath the surface, – stirring and darkening the soul until pain – perceives new possibility.  There is nothing – to do but learn and wait, return to work – on what remains.  Seed will sprout in the scar. – Though death is in the healing, it will heal.

This is what she says in her commentary following the poem: “Three truths emerge conspicuously from this little passage that offer a durable way of understanding comfort and restoration: (1) there is nothing to do but learn, wait and return to work on what remains, (2) seed will sprout in the scar, and (3) healing and death are not always mutually exclusive.”

At this point in our journey, I am earnestly searching for the sprouts that are emerging in the scars left by the Parkinson’s and Parkinson’s Dementia.  Some are easily apparent, others still in hiding.

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 17, 2010

Tough Night and Morning

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Things really fired up last night.  It wasn’t our worst night, but not too far from it.  Mary Ann bounced from one reality to another to another to another for most of the first half of the night.  It slowed to two or three times an hour between 3am and 6am and then started in again in earnest.

It was a very bizarre world she was in until she finally rested her head on the little table later in the morning.  She described in great detail a birthday party that was thrown for her — never happened.  She talked to her Dad.  She reported to Bath Aide Zandra that her brother from Wyoming made a surprise visit.  She was constantly seeing and talking with people, describing things that were happening right in front of her as I was there completely confused by the stream of apparitions.  She had to get up early to finish the Blueberry French Toast egg casserole that was not there.  She came back to that a number of times.  It is very good.  I may try to make it soon just so that we both can enjoy it.

As always, I was completely at my wits end throughout the night and morning.  The hallucinations were a constant presence when I was with her all day long.  This morning, she was in hyper-mode.  She was talking clearly and distinctly, walking pretty much on her own. I just held on to the gait belt for dear life as she moved quickly from one place to another either with clear plans in her mind for what she would do or no idea why she had gone there.  It is such an odd combination of dementia and energetic activity and strong communication skills that there is no way I can describe it adequately.  All I can say that from my perspective it is utterly maddening.

Gratefully, Friend Jeanne came over and gave us a break from one another for at least a couple of hours.  This evening Friend and Volunteer Shari was with her so that there was another break. I just sat and watched the sunset, half dozing.  I read a little from the book of devotional observations on the St. Patrick’s Breastplate prayer.  Both the sunset rest and the reading helped some, but my brain is just very tired.

I plan to wait at least until Wednesday to phone the Doctor’s office to report on the impact of the increase in Seroquel.  As I said last night, the vagaries of Mary Ann’s symptoms makes it almost impossible to discern what has to do with that change and what is just another of the usual vacillations.  The med is supposed to reduce hallucinations.  The last time we increased it, the first three days of the increase had more and stronger hallucinations than ever.  That is what has been happening today.  I want to give this change at least three days just in case it becomes effective after that, as happened with the last increase.

This continues to be one of the tougher times in the years we have been battling the disease.  I expect tonight to be a difficult one.  I will know for sure in a few hours.

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

Great Visit!

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Coleman and Trudy live in Oklahoma on an inlet of Grand Lake.  They were members of my first parish in the Kansas City area.  They have a beautiful rustic setting and appreciate wildlife, especially the birds, as do we.  They brought Oklahoma Joe’s BBQ (from Kansas City).  We ate and talked and mostly enjoyed the birds.  The birds were very active, busy all the while we were watching. It was rainy all day, but never really rained. It seems as if the birds spend more time at the feeders on rainy days.

Mary Ann started getting fired up for a hallucination day this morning.  She was up a cluster of times, especially toward morning.  We got up sometime between 6am and 7am.  I got Mary Ann dressed and fed, then washed her hair in preparation for the company.  She was doing a lot of hallucinating, not as intense as some days, but on her way to unmanageable.

After a time, she lay her head down on the table.  When we headed in for a bathroom trip, she sort of wilted and ceased to be able to do much to help in transferring from the wheel chair to the toilet stool.  I was concerned that I might not be able to get her back to the chair.  She was not completely limp, so I was able to get her into the chair and then into bed.  This was a bit of a new twist on her condition, although I tend for forget quickly what we have been through before unless it was particularly traumatic.  Forgetfulness is sometimes a blessing!

I was concerned that she might be down and unable to respond for the entire visit today.  As it turned out, after an hour or so of sleep, I was able to get her up in time for their arrival.  She did pretty well for most of the three hour visit.  Trudy is a good friend to Mary Ann and has been for decades.  She kept Mary Ann engaged as much as possible.  Coleman and Trudy are both valued friends to me also.  We seem to have a lot of interests in common (especially Grandchildren).

Mary Ann did lay her head down for a while, but perked up again until they had to get on the road.  While yesterday Mary Ann fainted every time she stood up, today she almost never fainted.  The hallucinations were not apparent during the time of the visit, but they have fired up again this evening.  Mary Ann decided she wanted a bowl of cereal since she only had an applesauce snack since lunch and chocolate cake, plus rhubarb pie later in the afternoon.  While at the table eating the cereal, she jumped and described an exciting sight.  She saw the flowering plant on the deck just outside the window, move and throw quills, as in a porcupine.  She has said more than once that she slept through the day.  Each time I reminded her about Coleman and Trudy’s visit — which she always then remembered. It is hard to imagine that there will be much sleeping tonight.  She just went back to bed, but I don’t expect her to stay there for long.

She has had the additional half tablet of Seroquel the last two mornings.  She takes one and a half pills at night.  The purpose of the Seroquel is to diminish the hallucinations.  It has the side effects of causing drowsiness and sometimes low blood pressure dizziness.  The last two days have not yet produced any behavior that can definitely be connected with the additional Seroquel.  Mary Ann’s dramatically varied manifestations of her stable of diseases, makes it very difficult to discern what might be the result of a med change unless there are either new symptoms or a very obvious change in symptoms that goes on for a number of days.

The complex and difficult task of figuring what to prescribe, how much to give and when to give it, makes me wonder how it is possible for a physician to make such a call in ten or fifteen minutes at an office visit.  I will wait another couple of days before calling the doctor’s office with a report on the impact of the new dosage of Seroquel.

Here eyes are still open.  I wonder what the night will be like?

 

May 14, 2010

She Finally Crashed!

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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

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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

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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

Mary Ann Sleeps — Oriole Entertains

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , |
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The hallucinations/delusions/dreams mixed with reality finally calmed enough by about 3am this morning for her to get to sleep.  The good news is that she stayed asleep long enough so that I could get caught up.  I got up a little before 10am.  She slept on until almost noon.

While she slept this morning, I filled a couple of feeders and then sat inside watching the activity outside on the deck, at the bird feeders and in the waterfall area.  The experience reminded me of pictures of folks going through an aquarium that has an underwater tunnel allowing them to watch the fish from inside their environment.  I sat in my little box (made of ticky-tacky??) as an observer, while they were foraging out in the open.

It was better than watching a huge high definition television screen.  There was a new character who joined the cast this morning.  It took me a few minutes to be sure what that flash of color was.  It was a Baltimore Oriole in search of food.  I had hung a Hummingbird feeder, an Oriole feeder and I had put out a dish of grape jelly, with little hope of actually enticing an Oriole to come by and spend some time.

The Oriole seemed a little confused.  He fluttered back and forth toward the glass of the sun room.  He moved to one of bushes next to a side window in the dining room and flew at that for a little.  Then he fluttered over to the hummingbird feeder and hung pretty much upside down, apparently managing to get some of the sugar water.

Then he moved over to the rail just below the Oriole feeder and not far from the dish of jelly.  Surprisingly, he just did not manage to spot the jelly, just two feet from where he was standing.  He fluttered up to the Oriole feeder and did not drink any of the orange sugar water there, but found the little pockets of jelly around the edge of the feeder.  By the way, I am using the word “flutter” very intentionally.  It was not just flying he was doing, it was what looked like very haphazard fluttering of his wings, allowing him to fly in place while trying to figure out where and how to land.

After Mary Ann finally got up, she ate a normal breakfast (she had not eaten supper last evening).  She was very subdued — almost completely non-verbal.  After eating, she agreed to head out in the car to do a few things.

Of course the first stop was PT’s for a cup of coffee, a single origin Ethiopian this time.  Then we went to a grocery that has a large seasonal garden center set up on their parking lot.  There we found a favorite hanging plant with small deep blue blossoms (sorry, no tag on the plant with its name).  Rather than hanging the plant, I put it right outside the lower window next to the sliding glass door to the deck.  That is the spot the Robin used for staging his attacks on his reflection in that glass panel.  The two spots on the deck on either side of the sliding glass door have provided the bonus of serving as perfect display areas for enjoying flowering plants from inside and outside.

After getting the plant (for Mother’s Day), we went to the farm produce store north of town to get asparagus.  We usually get three or four pounds each time we go since the season is fairly short.  The only other item they had that was from their own fields was Rhubarb.  I couldn’t resist it.  Mary Ann’s Rhubarb pie is so good that given the choice between a piece of that pie and a Turtle Sundae from G’s, I would eat the pie.  Those of you who know me well understand just how good that pie must be. The problem with getting the Rhubarb is that there is a long way between a handful of Rhubarb stalks and a piece of that pie.  Whether that long way will be traversed any time soon remains to be seen.

By the time we were back in town, Mary Ann was ready to have lunch.  I had only had a banana for breakfast, so I was anxious to eat.  We went to her favorite, Bobo’s, for a cheeseburger and fries.  I had the more healthful fish sandwich, deep fried and slathered with tartar sauce. Mary Ann was able to handle the burger and fries with little help.

After lunch I stopped at the Wild Bird store to pick up a couple of things and get some lessons on Oriole and Hummingbird feeding.  The message was, throw out the old sugar water and make new.  That is what I did when we got home.

Mary Ann had started dozing in the car, so as soon as we got home, I got her in bed to nap.

While she was sleeping and after I finished redoing the feeders, I sat and watched the big screen nature channel provided by the sun room glass.  One thing that I had noted when doing the feeders was that something had been at the grape jelly.  After a time of watching, the Oriole returned and headed directly for the jelly.  I hope he brings friends.

Mary Ann has slept straight through supper (I tried getting her up, but it didn’t work).  At about 9pm I got her changed into her pajamas and and the nighttime pills taken.  She still did not want to eat.  She finally stirred a little about fifteen minutes ago (about 10:40pm).  I sat her up and asked if she wanted something to eat.  She chose a single serving container of applesauce.  It turned out to be a bit of a new experience.  As I put the second spoonful in her mouth, she seemed to resist.  I went a few feet to get a nearby napkin.  When I turned back around, she had fainted and was completely out, gratefully having fallen to the side, still on the bed.

I got her back up into a sitting position after she came around and continued to feed her the applesauce.  She fainted again.  This time I was sitting next to her on the downhill side, so I was able to hold her up.  After she came around again, I resumed feeding her the applesauce.  With only a spoonful left she went out again.  This time I got her down to the pillow, moved her around into a comfortable position, where she is at the moment.

I am concerned that the daytime sleeping a third day in a row is fueling a switch between day and night for her, sleeping in the daytime and agitated at night with hallucinations, delusions and dreams confused with reality.  I am not sure what to do about it, since when she sleeps during the day, it is not just a light sleep from which she can be kept awake by urging activity.  She just shuts off.  She can’t stay awake.  The converse is also true.  When she is awake at night, she just can’t make herself sleep and not dream or hallucinate or have delusional thoughts.

I am very grateful for the pleasure and the calming that comes with sitting and watching the activity outside those panels of glass in the sunroom.  It does not seem to get boring since there is always the hope of some new cast member joining the regulars, the Mallards, Mourning Doves, Grackles, Robins, Blue Jays, Cardinals, House Sparrows, House Finches, Cowbirds and Fox Squirrels.  The Possum only comes at night, so I have not enjoyed watching him, just dumping the Possum pellets out of the ground feeder in the morning.

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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