February 14, 2010

She Got Out of Bed

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I went to bed very early last night, dreading what I assumed would be a sleepless night, probably including lots of hallucinations.  She had slept the entire day yesterday, the night before, most of the day before, most of the night before that, much of the day before that.

I knew what was coming.  It never came.  She slept the entire night and into the morning.  It settled in my mind that she was in a pattern of sleeping constantly.  As I showered, I concluded that it was simply not acceptable for her to be sleeping this much.  I would rewrite and update the fax to the Neurologist and ask if I could titrate back to a lower dose the Seroquel.  I concluded that whether or not this decline is due to over-medication of some sort, I would assume it was since we can do something about the medicine.  We can’t stop the disease process.

When I got dressed, Mary Ann needed to use the commode and agreed to get dressed.  While midstream in getting her dressed, she said she needed to go back to bed.  I tried to entice her with breakfast, washing her hair, a trip to the grocery later for items including Valentine candy.  It didn’t work.  She couldn’t stay up.  She lay back down.

I went on about the morning chores, more committed to working on changing the meds.  Then, to my complete surprise, I heard the shuffling of the bedding as she started trying to sit up.  She got up, I got her dressed, she came to the table and with my help took her pills, drank her juice (with Miralax mixed in) and ate her yogurt (again with help).

She moved to the living room and sat up in her chair without leaning forward into her lap as she had been doing that last days most of the little bit of time she was up.

After a while, we had a very enjoyable visit from friends (former parishioners), Don and Edie.  They brought flowers, a bottle of wine and Valentine’s Day card, as well as some very tasty homemade orange and pecan sticky buns.

They were able to stay a bit.  After fixing the flowers, Edie spent time talking with Mary Ann.  Don and I were talking in the kitchen, so I am not sure how responsive Mary Ann was, but the little I could hear seemed to suggest that Mary Ann was alert and engaged.

After they headed on their way, Mary Ann was willing to get in the car and head to the grocery.  We picked out cards for one another — a little strange to help Mary Ann pick out the card for me.  We got the usual Russell Stover box of candy.  Then  we spent quite a while getting groceries.  I decided to get some more packaged Uncle Ben’s rice dishes and a package of Suddenly Salad, since that had gone over so well with Mary Ann.  I realize that I need to come up with more variety for meals.  I am hoping to find some good packaged meals that provide the seasoning packets, increasing the likelihood that the result will be edible.

Mary Ann ate a good amount in the mid-afternoon.  She wound down and began leaning forward again after that.  She went in to lie down by shortly after 6pm.  She had a snack around 8:30pm along with the nighttime pills.

I am preparing myself mentally for being up with her tonight.  If she does sleep through it will be a nice surprise.  I do better if I am prepared for a difficult night.  I am less frustrated and resentful when it comes.

At the moment, I remain at least as hopelessly confused as I was last night when I wrote.  I was so convinced this morning what I should do next, and now Mary Ann’s day of alertness has pulled the plug on that plan.

At least my confusion resides in a rested mind, since I was able to sleep all night again last night.  I wonder what tonight will bring?

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

 

February 13, 2010

Hopelessly Confused — Me, Not Her

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I need to find some synonym for “confused.”  I wonder how many of the posts I have written over this almost year now of writing that have the phrase “hopelessly confused” in them.  Again today I am hopelessly confused.

Mary Ann settled last night after a few signs of restlessness. Oddly, in one of those restless moments, I came in because she had been moving around in bed, seeming to be ready to hop up (as seen on the monitor while I was at the computer).  She asked me something about where I was going to go.  I don’t remember the exact words.  I told her I wasn’t going anywhere and asked what brought her to ask that question.  She said that she had been thinking (or dreaming) that I was going to divorce her.

I told her that she was not getting rid of me that easily, and that it was not even a remote option.  I wondered from where the thought had come.  Even in my most frustrating moments, when my words were far from sweet, that was never a word used or even implied.  As different as we are in some ways and as many times as we were not pleased with one another in our 44 years of marriage, that was never a realistic option.  I make no judgments on those whose circumstances became so difficult that divorce was the best option in a bad situation.  Our conflicts and frustrations never reached the level of raising that as an option.

What causes me to be hopelessly confused at the moment is that, after working on the sheet to fax to the Neurologist about changing meds to control the bouts of hyperactivity and streaming hallucinations, Mary Ann has been subdued and sleeping a lot.

After our conversation eliminating divorce as an option, she settled in for the night, and the morning and into the afternoon!  She has gotten up seldom to use the commode.  She slept until almost 10am (okay with me!).  I helped her to the commode and got her dressed.  As soon as she was dressed (while we were finishing) she started trying to lie down again.  I took her blood pressure (210/120), and then she just lay back down in the bed.

At about 1:15pm, she was moving a bit, so I asked if she wanted to sit up.  She half-heartedly agreed that she did.  I got her to the bathroom and out to the dining room for pills and yogurt.  As soon as she was done with the yogurt, I asked if she wanted cereal or lunch food next.  Then I asked if she was still hungry at all.  She said that she was tired.  She wanted to lie down in bed again.

It is now 2pm and she is resting peacefully.

It is now 3:30pm.  I sat her up to take her mid-morning (I know!) pills, take her to the bathroom, change her pad (disposable underwear), and get her jeans on again.  I asked if she was hungry.  She said no.  I asked if she would like to come out into the living room and watch some television.  She said she wanted to go back to bed.  That is where she is.

It is now 8:30pm.  I got Mary Ann up (she was reluctant) at about 5:30pm.  She was not hungry, but after sitting up for a while, she agreed to eat some supper.  I cooked and sliced up a bratwurst for her.  She likes them and they are easy to eat in that form.  She managed to spear them with the fork and get them to her mouth on her own.  She had a chip or two and some Pepsi.  Then she ate a dish of ice cream from the freezer with very minimal help from me.  She had some fairly normal intestinal activity.  She then sat in the chair in front of the television, but after a short time of sitting up, began leaning forward on her lap again.  At about 8pm she decided it was time to go to bed.  I cannot imagine that she will sleep the night after sleeping most of two full days and nights.

I now have no idea what I would write on the sheet to fax to the Neurologist.  What I wrote Wednesday does not reflect what is going on now.  If meds are changed to calm her down, she hardly needs that.  If meds are changed to perk her up, the wild hallucinations and hyperactivity might return with a vengeance.

By the way, I expect the hallucinations and hyperactivity to cycle back in at some point. I dread that time.

She hasn’t been fainting but seems likely to do so again judging from the past.

Everything she is experiencing, including the vacillations from one extreme to the other are talked about frequently by those in the online group of Lewy Body Disease Spouses.  That does not prove that Mary Ann’s current vacillations don’t have to do with medications, but it does suggest that all this is just part of the deal. It also helps take the pressure off, suggesting that what I do or do not do as problems arise probably does not have all that much power to change things either for the better or for the worse.  This is outside my power to fix.

For someone who has been a planner who struggles with changing quickly from workable patterns, this is madness on steroids!  At the moment, as long as I accept that things may change in a heartbeat, Mary Ann sleeping a lot and remaining fairly subdued when awake makes caregiving doable.  I lament the loss of having more time that she is alert and communicative, but I am grateful for being able to continue to care for her here without going crazy.  If/when the hyperactivity and streaming hallucinations return, it will take about fifteen minutes for me to conclude again that I am in over my head.  What a ride!

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

 

February 12, 2010

Only Three Months Ago

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Only three months ago we went on a trip to Hot Springs, Arkansas.  We stopped in Oklahoma City on the way to help John celebrate his 60th birthday.  We had a wonderful three days, even though it rained part of the time.  The trip back home included an overnight stop in Eureka Springs, where we visited the Thornton Chapel.  It was a very enjoyable trip.

We returned Friday night.  Saturday afternoon, Mary Ann woke up from a nap with her chest hurting.  We went to the Emergency Room and ended up spending three days in the hospital, getting fluid out of her system to relieve a relatively mild problem with Congestive Heart Failure.

Even though there had been no problem medications given to her while she was there, nothing other than lack of sleep and the distress for Mary Ann of being in the hospital, Mary Ann went home very confused and weak.  She spent the next four days sleeping.  Slowly she regained some alertness, the ability to feed herself again (most of the time) and returned to maybe 75% to 80% of where she had been before the hospital stay.

Three months later, she is hallucinating most of the time she is awake.  She is either awake half or more of most nights, confused about where she is, reacting to dreams and hallucinations, unable to distinguish between them and reality. She has not been able to sit up in a chair.  Even with the safety belt on the chair she hangs almost falling out of it.  She was finally willing to lie down in bed and watch television.  For the last hour and a half or so she has been lying in there mostly awake, taking things not visible to me and putting them in her mouth.  She can only on occasion feed herself.

This morning she told me about the hippopotamus.  She admitted that it was probably just a dream.  I was encouraged a bit that she spoke as if she knew it wasn’t real.  We were trying to find a Kleenex that had fallen in the water, and a hippopotamus appeared.  Then there were eight, she counted them then told me the number.

It is hard to absorb so much change in such a short time.  I am certainly not done challenging the medication regimen to see if there are changes that might help.

The afternoon today has gone a little better.  The hallucinations have continued but at a less intense and distressing pace.  She has had her head down most but not all of the time.

Lunch surprised me in that, while she said she did not want me to help her eat, she accepted my help anyway.  I had made a boxed pasta salad I found in the cupboard.  We happened to have some of the suggested optional additions in the house.  I did not expect her to eat it, but she was interested in tasting it.  She ate a large quantity of it.

At supper, after she allowed me to help, she ate a reasonable amount of Mary’s pork chops from the freezer and some of an Uncle Ben’s wild rice side dish.  Immediately after supper, we headed out to get my coffee refill (Mary had delivered a cup earlier today), and we got some B&R.  She managed to eat part of the two scoops on her own and then let me help her get the rest.  She had begun spending more time with the hallucinated food and the ice cream was melting.

The Cardiologist’s office called in response to the information sheet and questions concerning Mary Ann’s high blood pressure.  One question I asked was: Is there any medication that is safe to use PRN (as needed) to lower her BP when it is far too high?  The answer was, no, nothing that would not risk causing the BP to either bottom out at too low a level or rebound to too high a level.

The other question concerned the use of Midodrine when she started fainting or her BP got too low (both numbers lower than 100).  I wanted to know if I could give that to her PRN as long as the dosage and timing were in the range we have used in the past couple of years.  To that, the Cardiologist said, yes.  Those were the answers I expected.

I shared with Angela, ARNP, who made the call to me, that I was not very concerned at the moment with the fainting.  Mary Ann is almost never walking on her own any more, so the risk of hurting herself in a fall is lower.  At the moment, the seat belt on the transfer chair is most often connected to keep her from falling forward out of the chair, or she is at the table in the heavy chair with the arms, very difficult for her to get out of on her own.  If the fainting occurs on the commode, as has often been the case, she usually remains there, and I am always close, able to get to her and hold her up.  Her BP was high again this morning.

Today went all right from the perspective of my ability to handle the situation as a Caregiver.  For a time, probably between one and two hours last night when I first went to bed, the hallucinations and energy level were pretty tough to handle.  She could only lay back down sometimes for a minute or so, getting up again with no awareness that we had just been up and worked her back to lying down.  That would not be bearable on a continuing basis.

She did not have a long nap in which she was sound asleep today.  My hope is that she will be tired enough to sleep through the night tonight.

One matter that cropped up on Tuesday may demand some rethinkning of the use of one of the tools we use for creating a safe environment.  The Lifeline speaker phone sent the recorded message asking us to test the Lifeline button.  I brought it out for Mary Ann to punch.  She simply could not get it punched.  The coordination needed to get her thumb in exactly the right spot and the strength to push it hard enough to set it off just were not there.  She would never have been able to get the button pushed on her own.  I guess I need to check to see if they have something that is easier to use.  I am considering the other alternative of wearing it myself.  That way if something starts happening to me, I can push it myself, and, of course, I can push it if something happens to her.  My memory is the problem with that idea.  Remembering to put it on is one problem.  The other is remembering to take it off when I leave the house while a Volunteer is with Mary Ann.

At least today, I have not had to resort to the language of the Na’vi (see last night’s post).

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

 

February 11, 2010

Catch up Day

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The lack of sleep finally caught up with Mary Ann.  Last night, it took her a while, but finally, she settled.  She slept through the night with only a couple of commode trips.  She got up early.  I was hoping she could sleep a little longer since Wednesday is the weekly 7:30am Spiritual Formation group. 

Since she got up at about 7am, I assumed that since there was no morning Volunteer I would need to stay with her upstairs, eliminating my attendance with the group in our downstairs.  While it did take a long time to get her needs met, pills and food and television in the bedroom set, I was able to get downstairs.  I had to head back up a few times.  I take the monitor downstairs with me so that I can see if she is secure in her chair in the bedroom.  That way I know when I need to go up and help her.

The hallucinations were less intense, and, while she was up from her chair a few times, she finally settled there and just put her head down on her lap as has been so when she is awake, but not in hyperactive mode responding to hallucinations. 

When Bath Aide Zandra came, she had some difficulty getting Mary Ann to sit up enough to get her through the bath and hair wash routine.  When I came in to put on her Exelon patch, she could not sit up at all and was hanging on the edge of her chair.  Zandra had tried to use the seat belt on the chair, but that was not working well. 

As soon as they were done, I helped Mary Ann back into bed.  That was at about 9:45am.   Mary Ann slept for six hours!   There was a new Volunteer who had asked that I stay while she was with Mary Ann since she was unsure of being able to handle her physically.  Doris ended up looking at magazines for the entire time of her stay from 11:30am to 2pm. 

I managed with great difficulty to give Mary Ann the mid-morning pills.  I gave up on the next set.  I had not caught Zandra early enough to ask her to put a nighttime disposable on Mary Ann.  I knew that there would be leakage to deal with by letting her sleep so long.  First of all, she was sleeping so soundly that there would have been no way to get her up sooner.  I talked with her, urging her to get up and go to the bathroom a couple of times.  She just couldn’t.

Given how hard it has been to deal with her current level of confusion and the intensity of her hallucinations, I was grateful to have a rest from it.  I hoped that the combination of the a night and day of sleep might help diminish the hallucinations and hyperactivity. 

When she finally got up a little before 4pm, she was able to function better, hallucinations somewhat subdued and relatively calm.  The hallucinations were still active, just not as intense. 

I was able to help her eat a half sandwich.  She ate a few chips and drank some Pepsi.  She sat in the chair by the television for a while, bothered some at first by the hallucinations.  Then she put her head on her lap for a time.  I reminded her about some left over B&R ice cream she had not finished yesterday.  She ate some on her own and then let me help her finish. 

She headed to bed at about 7pm.  It is hard to know whether tonight will be part of the catching up time, or a restless one since she has slept so long in the last twenty-four hours.   She has been up a number of times already, responding to hallucination/dreams, once intending to get up for the day.  The time then was 8:50pm. 

I spent some of the time Doris was here working on a fax to send to Dr. Pahwa, Mary Ann’s Neurologist at KU Medical Center.  I want to see what tonight and tomorrow bring so that I can add that to the informaiton on the sheet.  I am asking him if it would be appropriate to do a review of her meds with an eye toward adjusting them — hoping, of course, to reduce the hallucinations. 

One side note: while it was good that I also got a little more sleep last night, I did not manage any daytime sleeping to do some catching up of my own.  The next three days do not include any time with Volunteers here.  If the next few posts seem to be written in Na’vi (a tribe of the native population on the planet Pandora in the movie Avatar), you will know that sleep has been elusive, and hallucinations intense. 

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

 

February 10, 2010

Unrelenting Hallucinations

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The hallucinations are now a constant presence.  All the time Mary Ann has been with me, she has been actively hallucinating.  Last night she was up at regular intervals, always hallucinating.  I had to talk her into lying back down.  She tried to get up for the day beginning at about 4am.

It has been harder to do everything we normally do.  Putting clothes on is more difficult since she is having trouble connecting on what leg to put where or how to hold her arms so that a shirt can be put on.  Often she wants to know why we are doing one thing or not doing another, often unsure what time of the day it is.

I knew it would be impossible for her to stay seated and safe while I took a shower.  Before drying my hair, I went out to check on her.  She was moving the lift out of the front door area.  When I came up she looked down the hall toward the office saying something about my mother, as if she was lying there. I don’t think she would head out the door of the house, however, I cannot rule out completely that possibility.

When finally I was finishing getting her ready to go to her Tueaday morning Bible Class, I mentioned that that is what I was doing.  “Bible Class, that will be somethign new,” she said.  At that moment, she had never heard of the group she has been meeting with for years.  During the Bible Class, apparently she was making the eating motions she often does, picking up imaginary pieces of food and putting them in her mouth.

There simply was not a waking moment that was not filled with hallucinations and the need to deal with them.  Mary (who schedules Mary Ann’s Volunteers) came over for a while to visit this afternoon.  Most of the time Mary was here, Mary Ann was in her transfer chair with her head down, close to sliding off on to the floor.  At least we were not up constantly chasing hallucinations while Mary was here.  Mary Ann decided to go and lie down toward the end of Mary’s visit.

Even when she lay down, she did not actually go to sleep.  Starting while Mary was still here and continuing until supper, she was in bed, but up and down as she is at night now.  If not very helpful to Mary Ann, at least the naps in the past have given me time to go to the computer, or just vegetate for a while.  Not this time.  She demanded my full attention and has done so every waking moment, as well as very many times during the night.

While, I, of course, am also in need again of some good nights of sleep, my being rested will not help in dealing with the level of needs she has now.

Last evening I enjoyed a wonderful break.  There was a local Audubon Society program at the library.   Volunteer Shari happened to be scheduled in the evening covering the time the program was held.  This was only the second time I have been at a local Audubon Society event of any sort.  The last time I came and went with no conversation, almost anonymously.  This time I knew someone who worked with the presenter and the one who introduced him.  Not only that, for fifteen years at a church in the Kansas City area, I had ministered to the family of the presenter’s uncle.  Those connections broke the ice, so I got to enjoy lots of conversation time at the end of the program.

As I was preparing to leave for the program last night, I realized just how much I needed time away and something distracting from the intensity of our situation at home at the moment.  This morning as the time for Mary Ann’s Bible Study was approaching, I was concerned about the uncontrollable stream of hallucinaitons, how that would play while she was with the group.  The weather was not good, as snow was falling at a far more rapid pace than predicted, making the side streets difficult.  There was plenty of reason not to take Mary Ann to her Bible Study.  She certainly seemed unaware of it in the midst of the hallucinations.

I just needed to get her there so that I could have another break from the intensity.  I knew her Truesday morning  group would accept her whatever she said or did.  I left my cell phone number with Mary, who sits next to her in the class, just in case Mary Ann’s words or actions were becoming a problem.

There seems to have been a transition from finding things to do when Volunteers come so that I will be more effective over the long haul, to needing the break just to survive another day.

I will be interested in how tonight goes.  Mary Ann has to be exhausted from all her activity day and night with no nap time to speak of in the last thirty hours or so.  She has needed my participation a number of times already tonight since she lay down two and a half hours ago.  The hallucinations have continued. It does not look good at the moment for any uninterrupted sleep tonight.  Assuming there is not a good night’s sleep for me either in the next couple of nights, I will need to try again on the paid overnight help.

I had better get to bed.  I am going to bed earlier and earlier in hopes that I can squeeze some sleep in before the worst of the night time problems emerge.  So far it has not been much help to get in there early.

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

 

February 9, 2010

Hallucinations Return – Blood Pressure Challenges

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Last night was another difficult one.   The times up were not as often as our worst nights.  The hallucinations did not include the hyperactivity that was present ten days or two weeks ago.  They were fairly constant and strong.  Each time during the night I needed to talk her into lying back down. 

She needed a snack shortly after going to bed since she had eaten so little at supper.  She wanted pizza at 4am or 5am (don’t remember which of the multiple early morning times).   She thought it was suppertime, even though it was dark. 

I took her blood pressure first thing this morning.  It was 220/120.  Needless to say I did not give her any Midodrine.  At 10:20am it was 140/90.  After a long nap I took her BP while standing.  It was 115/60.  About fifteen minutes later I took it again while she was sitting.  It was 170/95.

It seemed as if I had too much information to give over the phone when calling the Cardiologist’s office.  Here is what I wrote and dropped off at the Cardiologist’s office this afterno0n: 

Dr. Meyer and Angela Bachelor, ARNP

Blood pressures on 2/4/2010 are in her chart – Midodrine: 10mg morning, 5mg noon, 5mg supper.

No blood pressures taken on 2/5 – Midodrine 10mg morning, 5mg noon, 5mg supper.

2/6, 10mg Midodrine in morning – sitting blood pressure measurements:

220/115 at 8:17am

200/110 at 11:30am – no noon 5mg Midodrine dose given

160/85 at 1:15pm

185/100 at 2:25pm

200/100 at 4:25pm – no suppertime 5mg Midodrine dose given

200/105 at 8:00pm

2/7, sitting blood pressure measurements – no Midodrine given all day

200/105 at 2:00am

220/120 at 8:45am

165/105 at 1:45pm

Standing measurement – 130/80 at 3:10pm

165/95 at 5:00pm

2/8, sitting blood pressure measurements – no Midodrine given all day

220/120 at 8:00am

140/90 at 10:20am

Standing measurement – 116/60

170/95 at 2:35pm

Questions:

Is there something I should be doing that would be safe for me to do (some prn med) to help lower her BP when it is so high? If so how high should trigger its use?

Can Midodrine be used prn assuming four hour intervals up to three times a day, last dose at suppertime, starting with 5mg per dose, titrating to no more than 10mg? Would either fainting or BP measurement with both numbers below 100 be appropriate triggers for Midodrine if prn use is authorized?

Peter Tremain, 2/8/2010

That is the blood pressure issue.  Now comes the return of the hallucinations.  The problem has continued and intensified a bit during the day today.  There is a little black poodle who looks like the one we used to have that Mary Ann has been seeing and talking to today. 

Zandra, her Bath Aide, reported that she saw a little girl during shower and morning prep time.  Mary Ann mentioned seeing our Granddaughter Ashlyn a few times today.  Ashlyn lives in Kentucky.  She has been seeing dirty spots on the carpet or bedding, wet spots in many places.  There have been lots of little gold chains.  There were racccoon tracks on her transfer chair.  She jumped a couple of times when either I stepped on something or once a vase fell and broke, neither actually happening. 

I followed her a few times to get something or find something or pick up something — all things that were not there.  She tried to explain things to me on a few occasions and got lost in trying to finish whatever it was, throwing up her hands admitting that she was confused. 

Again today, eating was a struggle.  She let me help her at breakfast, and lunch, except for the ice cream.  At supper she let me help some, but ate more ice cream on her own.  She tried eating it without a spoon, then got a little into her mouth using thespoon, finally agreeing to just put it back in the freezer.  She would not let me help her eat it.   At lunch and supper, she kept using her hands to pick up and take things to her mouth, things that, again, were not there. 

I have been back to the bedroom a number of times now.  The Thursday people are here, even though it is Monday.  She had trouble again with the need to go home.  Then she said something about not being obligated to let the people stay over, although that was juxtaposed with the her wanting to go home.  When she asked what the plan was, what she should do next, I said that it is 11pm and it would be great as far as I am concerned if she would lie down and go to sleep.  She thought she could do that.  I have no illusions that it will happen any time soon.  We have just been up again dealing with the problem of the people she sees here in the house. 

While the intensity of her hallucinations does not have element of hyperactivity as they did a while back, I can see that hyperactivity just over the horizon. 

I need to start writing the note to fax to Dr. Pahwa, her Neurologist, who specializes in movement disorders such as Parkinson’s (a program and the University of Kansas Medical Center in Kansas City).  I need to lay out in the note just what has gone on from the weeks before the increase in Seroquel to now. 

As I have commented in these posts more than once before, changes in medication sometimes backfire.  If something is removed for a while, sometimes when it is reintroduced, it will not do what it did before.  There was a small study reported in the online Lewy Body Dementia Spouses group that showed folks reducing dosage on medications that were causing hallucinations, but in the case of Parkinson’s Disease Dementia, the hallucinations continued in spite of that reduction.  Sometimes meds start something that cannot be stopped.  Sometimes, of course, the disease has just progressed farther and there is nothing that can change that decline. 

While we may be nearing the end of our options for dealing with the progression of the symptoms of this disease, we will continue until all the current options are exhausted — and then we will look for more options after that. 

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

 

February 8, 2010

Blood Pressure Refuses to Budge

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , |
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This is the person whose Autonomic Nervous System has not been able to maintain a consistent level of blood pressure for the last few years.  It has vacillated up and down and down and up again.  Now the pressure gauge in her body seems to be stuck on high.

After consistently high blood pressure readings yesterday (see last night’s post), this morning at 2am I decided to take her blood pressure.  We spent a couple of hours up most of the time between 1am and 3am.  At 2am it was 200/105.  I decided to take a reading this morning when she first got up so that I could decide whether or not to give her the morning dose of Midodrine.  The Midodine raises her blood pressure to keep her from fainting from the Orthostatic Hypotension — sudden drop in blood pressure when standing, resulting in fainting, what the doctors call syncope.

Her blood pressure reading at 8:45am was 220/120.  Needless to say, I chose not to give her this morning’s dose of Midodrine.  I will keep track of her blood pressure and phone the Cardiologist tomorrow if it is still stuck at such a high level.  Actually, I will call no matter what to report this long stretch of high BP and ask if there is something that would be safe for me to give her to lower it when it is this high.  I also need to try to take her BP when she is standing to see if it lowers then or remains high.  At the Cardiologist’s office last Thursday, her BP was consistently measuring higher than yesterday and today’s numbers here at home even when we stood her up and ARNP Angela measured it.

Last night was not an easy one at least for part of the night.  I went to bed very early for me.  By around midnight or a little later, she started getting up, disturbed by the people.  At one point she wanted to get up and out of bed for a while to get rid of the people in her head.  I was encouraged by the way she said that, realizing (or saying for my benefit) that they were in her head, not actually in the house.

I reacted differently from the past when I have gotten irritated and insistent with her.  I encouraged her and helped her lie down, reminding her that staying awake would make them worse instead of better.  Each time she lay down, I returned to my bed but stayed awake, listening intently to her.  Whenever I heard her mumbling or moving around, I asked if I could help.  In some cases I went over at talked with her a bit.  At one point when I was in bed, she asked what the man was doing in my bed, meaning me.  I reminded her who I was.  It was odd that she seemed to be talking to me but at the same time about me as if I was someone else.  I assume it is a version of the Capgras Delusion I have talked about in earlier posts — the perception that a person has been substituted for another (as in the body snatcher movies).

I stayed awake most of the time for about an hour and a half as we interacted off and on.  Then she settled and slept through until morning, other than the usual commode trips.

I got up earlier than usual this morning so that I could get ready for going to the 11am worship service.  When Mary Ann got up, she asked what we were doing today.  I helped her tune in to the fact that it was Sunday, and that I was planning for us to go to the 11am service, then out to eat at the Brick Oven, and watch the Super Bowl later in the day.

When eating the yogurt, drinking juice and taking pills, she was in eyes-tightly-shut mode.  I needed to feed her again this morning.  When I offered the usual options for cereal, instead of picking one, she said she was tired and wanted to lie down.  She was pretty unstable from the time she got out of bed.

I did make a point of weighing her to see if she is retaining fluid.  Her feet have been swollen the last couple of days, including this morning. Her weight was almost exactly the same as it had been the last time she weighed herself on that scale.  I will continue to monitor that as long as her feet remain swollen.

After she made a trip to the bathroom, when I asked her if she still wanted to lie down, she said her stomach hurt and, yes, she wanted to lie down.  She was concerned about lying down, knowing that I wanted to go to church.  Those words and actions, stomach hurting and wanting to lie down, usually asssociate with intestinal activity at some point. I knew that major intestinal activity would be far easier to deal with here at home than at church.  There would have been no way to manipulate her into going at that point, nor would it have made sense to try given those circumstances.  It is now well past the time church would have started and she is still sleeping.  I am sitting here at the computer with my suit pants on.  I guess it is time to change into stay at home clothes.

She slept for about four hours.  I should have gotten her up at some point to go to the bathroom.  Even though she had a night time disposable, it leaked. The bedding needed changing anyway.  The PJ’s and bedding are in the washer. I waited a little longer than I should have to give her a pill and get her up since I had ended up sitting down and reading, listening to the waterfall and birds in the back yard through the speaker made to bring outdoor sounds in.  Last night’s time up with Mary Ann caught up with me and I wanted to have some extra time just to rest.  She called for me soon after the time her med timer had gone off.

I took her blood pressure when she got up.  The reading was 165/105, not good but better than earlier in the day.  I cooked a bratwurst at her request.  Bratwurst and chips sounds like good Super Bowl Sunday food.  She handled the bite-sized slices of bratwurst on her own, as well as the dish of ice cream from the supply we bought at the store yesterday.

After lunch I asked her if she was willing to let me check her blood pressure while she was standing.  It was considerably lower, 130/80.  It was a little harder to hear clearly through the stethoscope since she was moving some.  It may have been a little higher than that, but certainly not lower.  When she has had problems with fainting, her BP has been very much lower than that when standing, and sometimes sitting.  Both numbers have been under a hundred.  The time she took the Tilt Table test at the hospital to verify that she had Orthostatic Hypotension, as soon as the table moved her from a lying position to 70% of a standing position, her BP dropped from a high reading, to 50/30.  A few minutes later she fainted.  I will keep checking her BP, but I would rather have a little fainting than allow it to stay as high as it has been the last few days.

A few minutes ago she showed me her glasses.  The ear piece on one side had come out of the hinge completely.  It will need to be reglued — hopefully possible.  We will take it in tomorrow.  I can only guess that spending so much time with her head down on the dining room table or the little table in front of her chair has resulted in loosening that ear piece.  I finally found an old pair of glasses she could use in the mean time.  It was almost comical in a sad sort of way that I found two old pairs that were not useable since she had fallen on them, in each case scratching one of the lenses so that it is completely useless. One of those falls took her to the Emergency Room with a giant hematoma on her forehead the size of her fist.

At suppertime Mary Ann’s blood pressure measured 165/95, again, too high, but not as high as this morning.  She struggled to eat supper and refused to allow me to help.  The last time I offered and she refused, I asked her why she wouldn’t let me help.  She was completely shut down, her face almost in the plate, getting nothing into her mouth.  Her answer was, “It is all I have left.”

She went to bed at about 7pm, watched the game from there, took her pills.  It was not long after that that she needed a snack — no surprise since she had eaten very little at supper.  She seems to be sleeping at the moment.  That, of course, can change at any time.

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

 

February 7, 2010

High Flying Blood Pressure

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , , |
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About 4am Mary Ann was up.  Then again once an hour until a little before 8am when we got up for the day.  There was some of the intensity that can develop into hallucinations and hyperactivity, but this time it did not get out of hand.

I suggested that after I wash her hair we should head to Perkin’s, where she always orders some pancakes and a couple of slices of bacon.  She liked the idea.  She did have juice and yogurt with her pills as usual, just not the bowl of cereal.  It took a while to get the morning chores done today, so it wasn’t until about noon that we actually headed to Perkin’s.  Then we headed to the grocery.  Even though I had a list, we ended up with more than intended.  Gratefully, it was all things that we routinely use.

During the morning, I began taking her blood pressure every hour or so.  Her blood pressure had been so high and the Cardiologist’s office on Thursday that it was pretty concerning.  Her morning meds included a whole Midodrine tablet with the purpose of keeping her BP up so that she doesn’t faint, on account of the Orthostatic Hypotension that has given her such difficulty.

I started at 8:17am, 220/115.  Then ranging from one hour to three and a half hours apart after that her blood pressure measured, 200/110; 160/85; 185/100; 200/100; 200/105.  I took it one other time when it the systolic was 200, but I didn’t get the diastolic.

I could not bring myself to give her even 1/2 of a Midodrine tablet for her midday and suppertime doses.  I know it is not good to stop meds cold turkey, but it just seemed crazy to give her meds that raise her BP when it was already dangerously high.  One thing that caught my ear was the Cardiologist’s ARNP mentioning the fear of a massive stroke.  I had mentioned that Mary Ann already had a stroke.  Angela responded immediately with that concern.  Mary Ann’s stroke was not a bleed, but a cluster stroke (bits of plaque, probably from the ulcerated lesion on her carotid artery).  Nonetheless, it is hard to accept blood pressure that high without major concern.

The last couple of days there has been some swelling of her feet.  She has not had that problem very often.  When she has had swelling it has gone down the next day.  Two days in a row catches my attention. She has not had the heaviness in her chest and the ARNP, Angela, did not hear any crackling in her lungs, the sign of problems with fluid build up.  I need to remember to weigh Mary Ann in the morning to see if she has gained any weight.  That is another of the signs of potential congestive heart failure.

Today, the hallucinations have emerged a bit.  When she started eating tonight’s two scoops of Baskin & Robbins, she asked Ashy if she wanted any.  She saw our youngest Granddaughter sitting in the transfer chair a couple of feet away from her. That Granddaughter is currently living in Kentucky, not in our dining room.

One of the choices we have to make for the remodel/addition of a Sun Room at the back of our town home will be vertical blinds to cover twelve feet of glass for the sake of privacy.  Stacey brought a sample book of blinds that seem ideal.  Mary Ann has gotten in her mind that there is another sort of blind that would be better.  The problem is, it does not exist.  She looked through the latest Martha Stewart magazine and has become convinced that she sees there what we should choose.  She said there are many examples throughout the magazine.  I paged through the entire magazine with her. There were a couple of pages that had what she decided she liked.  They were pictures of an open porch with no blinds, just greenery, vines and bushes in the yard the porch is overlooking.  Then on another page she pointed to some large pictures of pink and red nail polish she said were the weights at the bottom of the blinds.

I could do nothing but tell her that we could not find blinds that exist only in her mind but do not exist in a way that we could actually buy and install.  This one is going to be tough.  I have absolutely no doubt that as long as we live, she will  routinely mention that we did not get the blinds she wanted for those windows and sliding glass doors.

Mary Ann’s ability to feed herself simply was gone today.  At breakfast, I assisted her as she worked to get the pills into her mouth.  I fed her the yogurt and held the cup and straw to her mouth.  At the restaurant at lunch, after I buttered them, cut the pancakes into bite sized pieces and put syrup on them, she got the fork in her hand with my help and was determined to eat the meal herself.  After an interminable amount of time, in which I had long since eaten my entire meal, she was still frozen in place with her hand lying in the pancakes, holding her fork wwith her head down near the plate.  On occasion she tried to get the pancakes up to and into her mouth, but no pancakes ever remained on the fork long enough to make it in.

I offered to help a number of times.  A couple of times I moved her hand with the fork in it so that some pieces were stuck on the fork.  She still could not seem to get them to her mouth.  Finally, she agreed to let me put each fork full into her mouth.  I did the same with the bacon, and with the straw in her Coke.  She ate most of the food on the plate.

At supper at home the same thing happened, she could not get the food to her mouth.  What seems strange to me is that she refused to let me help her even though we were in a completely private setting.  She ate almost nothing.  When I returned with the ice cream from B&R, she could not manage that on her own either.  After a while she did let me help her eat the ice cream.  I can only guess that she really likes pancakes, bacon and ice cream, so she allowed my help.  She was not so fond of the ham and cheesy potatoes at supper, so she was not so motivated to accept the help.

After getting back from the grocery this afternoon, I worked on filling the pill containers for the week, while Mary Ann watched television.  Her head was hanging on her lap much of the time.  One of the times I came over to help her sit up, she said one of the things that always triggers feelings of guilt and some helplessness.  I don’t remember her words exactly, but message was: I am bored sitting here all the time doing nothing but watching television, and I am just wasting away.  The implication was: you aren’t providing me with enough activity and stimulation to provide a decent quality of life for me.

I have talked about this in earlier posts.  I do feel guilty about not providing her with more attention and engagement.  My rationalization is that my life already revolves around her wants and needs all day every day and all night every night.   There are two truths that sort of intertwine as I process what she said.  One is that I really should do more to engage her attention and improve the quality of her days.  The other is that she has Parkinson’s Disease and Parkinson’s Disease Dementia and there are resulting consequences and limitations that I cannot fix.  I cannot give her the life that has been taken from her by the disease.

One goal in processing this issue is to keep my feet to the fire to try to come up with things that will keep her interest.  My hope was that the lunch out and the trip to the grocery would help.  Tomorrow I hope to get both of us going early enough to make it to the 11am worship service followed by a meal out at a nice restaurant that we both like.  Then later in the day will come the Superbowl.  She loves professional football and will enjoy watching the game.

The other goal in processing this issue is to accept my own flaws and imperfections and let go of the guilt and frustration that I am not doing more.  This has actually been a better than average week in one regard in particular.  I don’t think I have said a cross word to Mary Ann this week, nor have I felt like doing so.  Sunday morning’s experience seems to have had some residual effect.  I have no illusions that the change in attitude will remain, but it has felt good to set Grumpy Caregiver aside for a few days.

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

 

February 6, 2010

Sometimes No News is Good News

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , |
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I will log today as a good day.  It was uneventful, gratefully so.  There were no dramatic hallucinations.  Last night provided a decent amount of sleep.   The times up during the night were not too many.  We slept late enough to compensate for the sleep lost during the commode trips and shifts in bed. 

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

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

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

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

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

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

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

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

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

 

February 5, 2010

Change is the Only Constant

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , |
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Hallucinations ruled until about 1am or so last night.  Then she slept through with only one or two commode trips until around 11:15am this morning.  I didn’t get up unitl 9:30am.  Nothing ever stays the same.  Yesterday that was not a good thing.  Today it was a good thing.  She gave very little indication of having hallucinations.  She was awake most of the day until she went to bed tonight at about 8pm.  I will not presume to guess what tonight will have to offer.

After Mary Ann got up and took pills with some yogurt, we began talking about lunch already.  I suggested the possibility of going out, listing a few of her favorite spots.  She did not really seem interested.  I am wondering if the need for me to help her eat is beginning to diminish her interest in eating in public.  Some point at which she seems especially sharp, I will ask her about that issue.

I offered to make scrambled eggs and bacon.  She took me up on that offer.  As I was getting the eggs out, I noticed the untouched left over baked potato from a couple of days ago. I realized that would make great fried potatoes.  About a thousand dirty pans, dishes, pieces of silverware, cooking utensils, and bowls later, I delivered Mary Ann, two scrambled eggs, seasoned with parsley flakes, garlic and onion powder, salt and pepper, covered with shredded cheese that had melted on top, home made bread (Maureen’s) toasted and buttered, fried potatoes and onions, two slices of thick bacon, all served on a warm plate.

Have I gone crazy???  It all started with sighting that potato.  Then I fried some eggs for myself, which I covered with the wonderful Peach Salsa that I order by the case from Texas.  From the time I started cooking to the end of cleaning the thousand dirty items or putting them into the dishwasher, wiping off the stove and counter, must have been close to two hours.  This cooking business with all the accompanying cleaning up duties remains on the outer edge of my domestic capabilities.

Gratefully, Maureen had brought for the freezer some very tasty vegetable beef soup to go with the home made bread.  That was supper.  Mary Ann needed help with that, as well as some help with the two scoops of ice cream from B&R that we had picked up from there on the way home from the late afternoon doctor’s appointment.

While our visits are usually with the Cardiologisit himself, today we met with Advanced Registered Nurse Practitioner [ARNP] Angela .  She had seen Mary Ann once when she was in the hospital last fall.  She knows her case well. It was especially comforting to hear from her that they (she and the Cardiologist) often talk about our situation.  They appreciate that we are traveling a very narrow road of functionality, playing meds that do opposite things against one another to get a result that allows us to survive.

It was scary today when three blood pressure readings at different times in the appointment all were in the mid-200’s over the low 100’s, even when she was standing.  Because of her Orthostatic Hypotension (low BP when standing up), normally the standing reading is much lower. Not so today.  The fear, of course, is a massive stroke, as well as long term damage to her heart and kidneys.  We all know that.  At home the readings have been in the 160 to 180 over 90 to 100.  If we reduce the Midodrine that Mary Ann takes to raise her BP, she starts fainting.

I am going to reduce the dosage of Midodrine a little (cut the noon pill in half) to see if we can do so without resuming the fainting.  One irony is that the Seroquel we have been raising to reduce the hallucinations, has the side effect of increasing the likelihood of fainting. Another irony is that Mary Ann is taking a heart medication after her heart attacks a few years ago.  That medicine’s purpose is to reduce heart pain by lowering blood pressure.  Another of Mary Ann’s Parkinson’s meds (to reduce the dyskinetic movements caused by another Parkinson’s med, the main one) can cause hallucinations and fainting.  The main Parkinson’s med can cause hallucinations, fainting as well as the dyskinetic movements.  Without that med, Mary Ann cannot move at all.

As the primary Caregiver, it is my job to observe and help inform the doctors prescribing these medicines, since I am with her 24/7.  I have been given permission to adjust the Midodrine and the Sinamet (the main Parkinson’s med) within certain limits as seems appropriate.

The doctors have no clear insight into how much of the problem with hallucinations is caused by medicine and how much by the disease process (Lewy Bodies on brain cells).  They don’t know how much of the fainting problem is the disease process and how much the meds. Both the disease process and the medications produce the constipation, as well as other non-motor symptoms.

My head starts to swim when I try to think through the effects of all the meds with the goal of suggesting a workable balance of all of them.  The truth is, the doctors and pharmacists are no better equipped to find that balance, since they don’t see the effects on a day to day, hour to hour basis.  When we have raised or lowered dosages of meds, Mary Ann has not always reacted the same way in adapting to the change.  Sometimes, as with the Seroquel, the change comes, and then leaves quickly, leaving no clue as to how to proceed.

For whatever reasons, the last part of last night and this morning have included sleep; today Mary Ann was lucid and did not seem to have strong hallucinations; she ate tolerably well and has been sleeping fairly calmly for the last couple of hours.  I have no idea what will come between now and the morning, nor can I even begin to guess what tomorrow will bring.

There is one note I would like to add.  It may change tomorrow.  It is likely to change soon.  Since Sunday morning’s powerful experience, I have not felt angry with Mary Ann at behaviors that frustrated me in the past.  I have been far more accepting of the challenges in caring for her.  The feelings of irritation may return soon, but for the moment, caring for her has been less draining emotionally since I haven’t spent so much time feeling angry and frustrated.

That observation makes me wonder how much of the irritability emerged from simple grief over what the disese has been taking from her and from us for twenty-three years.  Again, there is no predicting how I will feel tomorrow or the next day about behaviors that have been frustrating to me in the past.  For the moment, there is a peace and a calm that has been missing for a long time.

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

 

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