February 23, 2010

Awake, Lucid and Fainting

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Sitting in the transfer chair in front of the television, she just fainted.  I took her blood pressure as soon as I could get the cuff on her arm, the stethoscope in my ears and the cuff inflated.  It measured 80/50.  About five minutes later I took it again.  Then it measured 90/60.  Remember the three weeks it measured 220/120 when I took it first thing in the morning?  Check a few posts back.

I started her on a half of a Midodrine pill three times a day.  I got in two doses today.  And so the roller coaster goes up and it goes down.  Today is the best day in the last four (if I am counting correctly) in terms of Mary Ann being awake and lucid.

She got up in time to eat and take pills before Bath Aide Zandra came this morning. While I needed to help her with all that she ate, she had a good quantity of food. She did faint more than once for Zandra as she was trying to give her a shower.

She sat up in the chair for the rest of the morning.  It was the longest she has sat up in the chair in many days.  There has been no evidence of hallucinations today.  She ate reasonably well at lunch, having a big bowl of ice cream for dessert.

After lunch she sat for a while and began slumping over some.  Soon she got up to go in and take a nap.  She slept until supper.  She ate reasonably well (I actually cooked) and had a lemon bar for dessert.

Since Volunteer Twila came for the evening, I was able to get out for a while and bring back for her a couple of scoops of Baskin & Robbins.  She ate that treat right away.  It was not long after that that Twila left and she went to bed.  She has been down for a couple of hours, either watching television or sleeping.

I have finished the fax to the KU Med Center Parkinson’s Clinic Neurologist and intend to send it tomorrow.  As I finished it, I could describe what has become a pattern for the last three weeks: two days and two or three nights with streaming hallucinations any time she is awake;  then two days and two or three nights of sleeping all the time (day and night); then a couple of days and nights in which she sleeps at night and is awake and lucid about half of each of the days.  Then the cycle begins again.  This is the closest we have come to a pattern in a long time.  It is not a wonderful and pleasing pattern, but at least it provides something coherent to communicate to the doctor other than constantly unpredictable changes.

Last night instead of getting to bed early as I had planned, I checked out some of the Taizé music on YouTube.  I followed it with some Russian Orhodox Liturgical Chant, also on YouTube.  That hour or so was very nurturing spiritually.  Since the snow and Mary Ann’s sleeping through the entire day precluded getting to corporate worship, I needed the sabbath rest more than the physical rest.  Tonight for part of the time I found a spot with enough light at PT’s coffee shop and read the book on science and religion called The Mind of God by Paul Davies.  I mentioned it in a prior post on this blog.  The author does not believe in God as do I, but his approach certainly makes it clear that he does not rule out that possibility.  He seems to be arguing for belief, based on the science, even though he does not claim belief.  My faith is nurtured rather than challenged by what I read.

As I have repeated far too many times, this is a particularly difficult time in our journey.  The Spiritual nurture is a key element in sustaining me during this time.  I am grateful for Mary Ann’s strong faith as we journey together.

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 22, 2010

Snowed in and Asleep

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I am beginning this post shortly after 2pm today.  Mary Ann settled into full sleep last night some time between 12am and 1am.  Other than two trips to the commode, she has been sleeping ever since. 

Just a few minutes ago she called my name, I went in and got her on the commode.  I told her about all the snow, she responded appropriately and clearly.  In moments, she was back to being unable to respond.  All she could do was make a grunt.  I tried to talk her into getting dressed.  She was just too non-responsive to manage that. 

I managed to get the Exelon patch changed, but she was not interested in taking her meds.  I don’t think she could have awakened enough to get the meds swallowed.  I reluctantly put her pj pants back on and let her lie back down.  She was having trouble continuing to sit erect on the side of the bed.

As always, I am grateful to have gotten a full night’s sleep.  While I don’t like losing her presence when she is in the daytime sleeping mode, sometimes she is fairly lucid for a while after she has slept off the last bout with streaming hallucinations.

Sooo close!!  Almost made it!  At about 2:30pm I decided to get something to eat.  After I got something heated and started eating I heard her.  By then it was 2:45pm.  I asked if she was ready to get up.  She said she was.  I suggested getting dressed before pills and food but thought better of it when she couldn’t seem to geet her eyes open. 

She drank some apple juice (with Miralax) and took her pills — I put them in her mouth and put the straw to her mouth to take with with the juice as is now the norm.  I fed her a container of yogurt.  Then I started suggesting cereal options or whatever might interest her to eat.  I remembered Mary’s jello (green jello, pineapple, cottage cheese and Cool Whip).   She wanted that and ate a good-sized serving.  It should be helpful since there is protein, calcium, fruit and carbs in it. 

Then I joined her at the table and finished my bowl of beef and noodles.  She asked where “Dad” was.  I think that would be me.  When I asked who she was thought I was and she answered “Mom.”  At that point, I suspect she had connected better and was just being silly — not sure about that. 

Anyway, as soon as we got back to the bedroom to get her dressed — you guessed it.  She needed to lie down again for some more napping.   That happened a little after 3pm.

Mary Ann got up again at about 6:45pm.  There was an odd irrational hope that the fainting issue had just sort of left her.  At the same time, I knew it would return eventually.  Earlier today I worked on re-writing the fax to the Neurologist and had mention dropping the Midodrine until the fainting returns.  I knew it was wishful thinking to expect the fainting to stay away.

Well, it has returned.  She fainted twice while in the bathroom, once on the stool and once when I returned her to the transfer chair.  She fainted again when she decided to stand up while sitting in front of the television.   What an insidious disease this is.  Not every person who is diagnosed with Parkinson’s will have to deal with quite this many symptoms in such severity.  It is the major heart problem combined with this form of dementia that has produced so many debilitating symptoms. 

It was not long before she decided she wanted to go back to bed.  She had said she did not want to eat when she got up this time.  I asked her again, listing lots of things as we were ready for her to get back into bed.  She agreed to go out to the table.  Again, she chose Mary’s jello.  I fed her a large dish of it. 

She is now back in bed.  It is 7:15pm, which means she was only up a half hour.  I am readying myself mentally for a difficult night.  She has slept through days and nights before, but it seems unlikely to me that she will manage to sleep through tonight also.   The most I can do to prepare is to get to bed early enough to increase the odds of getting some sleep even if it is a bad night.  I got a good night’s sleep last night.  That will help.

My day was spent mostly reading posts of those in the online Caregiver Spouses group and the Kansas Birders.  I managed to rewrite the fax to the Neurologist and update it.  I did get outside to shovel off the deck and a path to the birdfeeders.  It was good to get a little exercise and get the birds some food that is accessible in six or so inches of heavy snow.  I am often annoyed on days like this that I still manage to procrastinate on many of the tasks on my list of things needing to be done.  There is in the back of my mind the likelihood that as soon as I get the preparations made for doing whatever it is, Mary Ann will be up and in need.  It is as good a reason as any to put off until tomorrow what could be done today.   (Isn’t that how that saying goes?)

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

 

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 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

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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.

 

January 3, 2010

Quick Changes in Alertness

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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Last night Mary Ann contiued her confusion.  While lying in bed, she asked about the group of people somewhere behind me or in her view in the living room — was it the Thursday group.  She asked if it was time to get up a couple of times, once at 9:20pm and again at 10:30pm.  She said something explaining what she was thinking, something that just did not compute, something about her relationship in location to others.   Once she got to sleep, she slept pretty soundly.

This morning, when she got up and was eating breakfast, I was looking through the Christmas card list.  I mentioned one couple at one point and she reminded me where they lived and that their daughter had twins.  These are folks with whom we have not interacted in decades, whom we remember mostly just at Christmas Card time.  I did not remember about the twins since it happened a year or so ago (I think).  Mary Ann asked about a former parishioner, whether or not she had died.  About a month ago she had gone into a Hospice House here, but had since stabilized and gone back to her Assisted Living apartment.  That Mary Ann remembered her situation was a surprise.  Mary Ann’s Bible Study about three weeks ago may have talked about it.   She said she wanted to go out to lunch today.   When I asked where we should go, she immediately said, “the Irish place.”   What a contrast to yesterday!  The place is called O’Dooley’s.  She always orders bangers and mash there.  Since she has never been an adventurous eater, it surprised me the first time she ordered it.  It actually is pretty straight forward, mild sausages and cheesy mashed potatoes. 

After an hour or so of alertness, she fell (while I was taking a shower), but as usual was not hurt at all.  After I finished showering, I got her back in the transfer chair — she fainted.  It was apparent that there had been some intestinal activity during or after the fall.  She became tired and asked to lie down.  There was some more intestinal activity and some major fainting on the stool.  She is now napping.  This was a particularly speedy trip down, up and down again on this roller coaster ride.

After her nap, we did go out to O’Dooley’s.  She had the Bangers and Mash.  I enjoyed the Portobella Mushroom sandwich with home made potato chips with a very tasty cheese dip and a Black and Tan (Guinness Stout and Bass Ale).   And I wonder why I am 25 pounds overweight.  When exactly is it that those New Year’s Resolutions go into effect?

What was sort of entertaining about the time at the restaurant was that when I asked the waitress if we had met, since she looked so familiar, she reminded me that during the five years she worked at G’s Frozen Yogurt she had often waited on us.  She remembered our usual order of two Turtle Sundaes, one in a larger cup so that Mary Ann could handle it better.  More reason for the extra twenty-five pounds.  It is still not fair that Mary Ann eats those good things and refuses to gain a pound.  That she brought half of her meal home and they didn’t even have to wash my plate since I licked it clean, might have something to do with that apparent lack of fairness. 

In addition to knowing the waitress, a young man from the kitchen caught me.  I recognized him as a former member of the parish I served before retiring.  He came over to the table, and we talked for quite a while, mostly about his future plans.  Both of the two were within a few years of high school.  It always pleases me when young people take the time to talk to us Geezers.  He also made a point of acknowledging Mary Ann by name as he left to get back to the kitchen.  That was a very thoughtful gesture, since so often someone in a wheelchair gets ignored.  Now that I think about it, I guess I am complicit in that problem, since I did not make a point of introducing him to Mary Ann. 

We rented some movies and watched one this afternoon.  After the Law and Order Marathon yesterday, I was grateful that we had been given a gift card at the local Family Video.  The movie was not very entertaining to us.  We were grateful when it was over.  Mary Ann was tracking well enough to recognize that she wasn’t impressed with the movie (“He’s Just Not That Into You”).  A customer in the video store had recommended it. 

Mary Ann went to bed very early again tonight.  I was in the living room when I heard the telltale thump of her falling to the floor.  She did not hurt herself, but she was pretty confused and seemed unable to come out with any words that made sense.  She was willing to lie back down and has been sleeping since.  That was about an hour ago.  By the way, she has had a stroke in the past.  This fall seemed like a pretty ordinary one.  The confusion afterward did not include the kind of speech pattern that is a telltale sign of a stroke.  She had no weakness on one side of her body.  Of course there are no guarantees since the range of some of her reactions often overlaps stroke symptoms.  We live in a narrow range of functionality.  There is a vulnerabilty we have just learned to live with.  Most folks who have lived very long are not unfamiliar with that vulnerability.

One especially pleasant phone call was one from Mary, who schedules Mary Ann’s Volunteers.  There are already ten slots filled for January, beginning tomorrow morning.  Those slots vary from two to three hours in length.  The weather may interfere with those visits, but it is a help to both Mary Ann and me that they are scheduled.  We have not had much time away from one another in the past week or so due to the blizzard and its aftermath. 

The ride the last couple of days has taken us up and down with rapid changes between the up and the down.  We continue to hang on for dear life during the down times and celebrate the up times. 

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.

 

December 14, 2009

Christmas Preparations

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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I just forgot!  I actually forgot about the Christmas tree.  I am a Pastor, how could that happen?  It is not that I forgot about Christmas.  I just forgot about the tree business.

Up until yesterday, the thought had not crossed my mind that there was something missing in our plans for Christmas.  We have been shopping.  Plans are made for the family gathering and celebrating Christmas on Sunday, the 20th, since that is really the only convenient time for our crew to get together.  (I have absolutely no idea what we will eat that day.)

I have even done the massive decorating of the outside of the house.  The decorations are unbelievably dramatic and terribly time-consuming to put up.  I will give you the details of how the decorating of the outside of our house is done.  First I open the garage door.  Then I walk over to the shelves in the garage and take down a box.  From that box I retrieve two artificial wreaths, each with a red bow on the bottom.  I take the wreaths outside and gently place one around each of the sconces on either side of the garage door.  What an undertaking!!! I am exhausted just thinking about it.

I feel like Pastor Scrooge when I drive through the neighborhoods to look at all the outdoor lights decorating houses and yards and then drive up to our house afterward.  Mary Ann would have loved having outdoor lights.  I just couldn’t bring myself to do it.  It is not some sort of theological statement about the real meaning of Christmas versus the decorations.  I am fine with people doing whatever brings them joy as they celebrate the holiday season.

I suspect that part of the reason I have not gotten into much in the way of elaborate Christmas Decorations is that before I retired, this was pretty much the single most demanding time of the year.  Admittedly, Holy Week and Easter are up there with it.  I was so focused on work, and so overwhelmed with all the preparations that I could not muster the motivation to carve out time for decorating the house.  Some of it is that I am far too easily frustrated when trying to take on new tasks and figure out what to do and how to do it.  I needed no added stress at such a busy time.

I don’t really know what other pastors do.  I suspect we are as varied as the general population in the area of decorating the house for the holidays.

We did always put up a tree and do some indoor decorating.  Mary Ann saw to that.  She did not say anything about the tree this year, and I just didn’t think of it.  Now in case someone reading this is getting depressed for us about the tree and indoor decorations.  Now that I remembered, the tree is up.  It has no lights or decorations yet, but it is up.  There are a few things on the mantle.

I have to admit that the motivation for getting the tree up is the fact that our Children and Grandchildren will be here next Sunday.  I suspect they would all be bummed if there were no tree.  Having talked with other folks our age and older, it seems that I am not alone in the lack of interest in putting up the tree.  Mary Ann, on the other hand, would probably not tolerate going through the Christmas season with no tree.  She has always loved the lights and ornaments.  Many years ago we put tinsel on the tree each year.  We had the classic difference in technique.  I would meticulously lay each strand of tinsel over the branches, and Mary Ann would toss handfuls of tinsel on to the tree.  It is a marvel we will be married 44years on Friday.

Mary Ann’s day today included a lot of sleep.  We both slept in.  It was about 10am before we woke (other than the commode trips). I got her dressed, gave her pills and breakfast.  There was an urgent trip to the bathroom, including a couple of substantial fainting spells.  Then when I took her out to the Living Room, she asked to turn around and go back to the bedroom to lie down.  She napped for a couple of hours.

This afternoon after she got up and ate a sandwich, I got the tree up from downstairs.  Then all of a sudden, she got up and headed off.  When I asked where she was going, she said to the kitchen to make something.  I became frustrated with the fact that I was mid stream in getting the tree up, and her actions were demanding that I stop, leave the tree parts in the box on the Living Room floor and help her in the kitchen. I insisted that she give me time at least to put the tree together and get the box out of the Living Room.  I had already moved the furniture to accommodate the tree in our small town home.

As soon as she said that she was going to go to the kitchen to make something, I knew what it was.  The last time we were at the grocery, Mary Ann insisted on getting some of what we have come to call “Lisa’s Cereal.”  In fact we phoned Daughter Lisa while standing in the cereal aisle at the store.  We disagreed on what cereal it was.  We bought two boxes of Quaker Oats Squares.  There is a wonderful pecan crunch made with the cereal, pecans, brown sugar, butter, Karo syrup, vanilla and baking soda.

After the tree was put together, we headed into the kitchen and made the pecan crunch.  Mary Ann sat at the little ice cream table that resides in the kitchen eating area, while I followed the recipe, without ad libbing, and prepared that decadent and very tasty snack.

After church tonight, we picked up some food that Mary had prepared for us, Lavonna’s beans, a couple of containers of spaghetti, and Mary Ann’s favorite green Jello with cool whip and cottage cheese.

Mary Ann is in bed, but the signs are that this will not be a good night for sleep.  I hope I am wrong about that.

 

December 1, 2009

Sleepless Night — Domestic Duty Day

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I think it was around 3am that Mary Ann finally settled.  Then, we were up pretty early again in anticipation of the Bath Aide.  Mary Ann has done no napping today, and she did not go to bed early.  Some days she can sleep well at night, then have a couple of two or three hour naps during the day.  There seems to be no rhyme or reason to when there is lots of sleeping and when there is very little.

When there has been little sleep, I appreciate that I am retired and have no major public responsibilities that would be impacted by my sleep deprivation.  I guess driving is a public responsibility.  If you see a dark colored Honda van coming down the street, give it wide berth.  The driver may be dozing.

Today has turn into a domestic duty day.  It was not planned that way, a couple of things just converged on the day. Both the medication that thin her blood (aspirin and Plavix) and the mucous production increase on account of the Autonomic Nervous System being impacted by the Parkinson’ s and Parkinson’s Dementia, combine to create the need often to change the bedding.  Today was not the usual day to change bedding, but I noticed that even the mattress pad that is protected by two chux had some stains on it.

I got out a new mattress pad and put the dirty one in the downstairs utility sink along with stained bedding, and a two or three ladles of Oxyclean.  After soaking a few hours,  and then running it through the washing machine, it is all in the dryer at the moment.

Then the weather for today and tomorrow allowed working on a much dreaded task. The Ceramic tile floor in the bathroom is a dangerous weapon in a household with someone who has both balance and fainting problems.   After a nasty fall and subequent trip to the Emergency Room, followed by a couple of hours with the Ear, Nose and Throat Specialist trying to get the bleeding stopped, I realized that the tile floor needed something to soften a fall.

I found something called Snaplock, twelve inch squares of mesh made of a strong and supple plastic mesh.  The squares snap together.  The colors were nice and the squares were easy to put together.  The squares are impregnated with something to reduce the mold.  Of course the squares must be taken up and cleaned a few times a year.  The weather is important, since the tiles get washed in the driveway, and dried in the sun.  I scrub them with an old broom after spraying them liberally with spray cleaners that kill mold as well as cleaning the tiles.  They then air dry.  They are on the driveway tonight.  I will leave them there and bring them in after the sun has done its work.

The hardest cleaning task actually is cleaning the ceramic tile that has been covered by the mesh squares.  Mold eventually grows under the tiles.  There is lots of spraying (Tilex and Clorox Cleaner), scrubbing with the broom, and rinsing that has to be done.  It is certainly worth the effort to have the protection on the ceramic floor.  Any Caregiver whose Loved One is subject to falling needs to be sure and cover ceramic tile with something safer.  Gratefully, the Snaplock tiles come in very nice colors, so the result after putting them down is not unappealing.

Blood Pressure update:  Now that I have reduced in half the Midodrine in preparation for starting the new medicine, Mestinon, I am trying to track her BP more closely.  Sitting down at the table earlier in the day, her BP was 107/65.  Tonight while lying down I tried taking it with the electonic meter.  It would not read her BP but gave an error message.  That usually means it is too high for the machine to measure.  When I took her BP by hand, it was 240/120.  There was no doubt about when the beat started and stopped while listening with the stethoscope since the beat was so strong.

That is another example of just how dramatically her BP jumps between high and  low.  Tomorrow morning I plan to add the generic Mestinon.  I hope it works.  I don’t know how long it takes to reach the therapeutic dosage. We will just wait and see what effect, if any, the new medicine has.

As always, we will see what tomorrow brings.

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.

 

November 29, 2009

More from Cardiologist

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , |
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There are a couple more of observations on Mary Ann’s appointment with the Cardiologist, Dr. M, on Friday that have come to mind today.  They were comments that he made may be of interest to other Caregivers and Spouses.  I mentioned them in passing in last evening’s post, but they seem to me to warrant more reflection.

As I mentioned in last night’s post, I had brought some information from the Internet on a medication that seems to offer a an option for keeping Mary Ann’s blood pressure up when she is standing, to keep from fainting, without raising it when she is lying down, the time it is already too high.

I had brought the information to his office earlier in the week to allow time for him to look it over.  He didn’t see it until he studied the chart before coming into the Examination Room.  He did take time to read what I had brought.  When he came in he said that he thought the medicine sounded very appropriate.  In fact, he indicated that he appreciated the information and would consider using for others when the need arose.

He added that he was not at all uncomfortable with patients bringing in information.  He did not perceive it as a threat.  Not only was I grateful to hear that, but it impressed me as an attitude that any of us, Caregivers or patients, should look for in a doctor.  Dr. M is confident enough in his role, that he is not afraid to deal with any sort of question or suggestion.  He will answer the question if he can and tell us if he can’t.  He will take suggestions when they are good ones, and explain why if they are not good suggestions.

I have the advantage of being in an online group of folks who have all had years of experience dealing with Lewy Body Dementia and often Parkinsonism if not Parkinson’s Disease itself.  The thoughts and ideas and suggestions there are very helpful since they have been tested in real world situations.  One thing may work for one person and not work for another, so the suggestions can only be just that, suggestions, when taking the information to the doctor.  Bringing an arrogant attitude to a doctor’s appointment is sure to produce an unpleasant result.  I suspect that doctors feel the same way about arrogant Patients and Caregivers as Caregivers and Patients think about arrogant doctors.

Another conversation the Cardiologist had with us was triggered by my asking if the Congestive Heart Failure that took us to the hospital actually demanded a hospital stay.  I told him about the tough time we have had since the hospitalization.  He suggested that if we come again, we ask if it would be possible to monitor her situation for a few hours rather than admitting her right away and starting a regimen of medicine administered intravenously. Again, if we explain our reason for asking rather than simply being demanding, it might impact the doctor’s decision.

Dr. M made the observation that doctors factor in their assessment of the Caregiver or Patient’s wishes concerning whether or not they want to be admitted.  I inferred from what he said that there is a sensitivity about whether or not Caregivers and Patients feel able to handle the situation at home, when deciding whether or not to admit the Patient to the hospital.

We have a pretty good system here at home for dealing with Mary Ann’s problems.  If (when) we end up in the Emergency Room again, we will evaluate carefully the value of being treated at the hospital against the toll a hospital takes on her ability to function.

In Mary Ann’s case, that might have meant getting the shot of Lasix and checking the Cardiac Enzymes for a few hours to see if they stayed the same or declined.  While sometimes I feel pretty overwhelmed by what is already needed to give the care that is necessary, I think we would even be able to deal with IV meds at home, as long as a nurse put the IV in, and a nurse would be on call in case it got pulled out and needed to be inserted again.  It is too bad that our system of medical care does not make more allowances for care to be given at home.   It is easier on the patient (more rest) and it would seem to be less costly.

The day was quiet.  PBS had a number of specials today with Celtic music.  I told Mary Ann that I wanted to take charge of the television today and watch them.  As I have metioned before, in our division of duties, she is the boss of the TV remote control.  She stayed awake to listen to the music with me.  She ate pretty well.  She has been a little restless tonight.  I hope she settles in for the night soon.

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

 

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