Twice today Mary Ann fainted.  She has not done so in many weeks.  The fainting is due to a sudden drop in blood pressure, referred to as Orthostatic Hypotension.  It is another of the systems run by her compromised Parasympathetic Autonomic Nervous System.  That system runs the smooth muscles, such as those that create the peristaltic movement that keeps everything moving through the alimentary canal (esophagus, stomach, intestines, colon).  It also runs the smooth muscles that cause our arteries to constrict when we stand up, raising our blood pressure to compensate for the pull of gravity.

That was a lot of technical language that simply means that people with Mary Ann’s version of Parkinson’s and Dementia are often constipated and often faint after getting up from a sitting or lying position.  In both cases today, Mary Ann fainted when on the toilet stool, after trying to get up.  Having watched this at close range for so many years, it was clear to me that both syncopal episodes (medical term for fainting is syncope) happened when a dose of her generic Sinamet kicked in.  When it kicks in her body starts involuntary wavy motions called Dyskinesias.  Sinamet (Carbidopa-Levadopa) is the main medication that treats Parkinson’s.  It is the same medication that has been used for decades.  Most of the newer meds just help the Sinamet do its job better.

During the hospital stay, I suggested lowering her dosage in half of the medicine (Midodrine) that raises her blood pressure to keep her from fainting.  Last summer we doubled the dosage when the fainting got out of hand and was reducing dramatically our quality of life. That medication and the higher BP slowly damages the heart, reducing its flexibility.  Her heart is enlarging, stiffening, her kidneys are being damaged.  If we eliminate the Midodrine, it might add a little time, but the time would be of little quality.  The goal of my suggestion of lowering the dosage is to find a middle ground that gives us the best we can get of both longevity and quality.

I am not yet ready to raise the dosage of Midodrine.  If the fainting comes only when the Sinamet kicks in, I think we can manage the problem.  If the fainting increases to the level it was last summer (multiple protracted fainting spells, sometimes even just when sitting in her chair) we will need to increase the Midodrine back to the full dosage.  We will do what is necessary when it becomes necessary.  Gratefully, the Cardiologist and Neurologist understand the problem and have given Mary Ann and I the freedom to adjust the two meds (Sinamet and Midodrine) within a prescribed range as we determine appropriate.  I am grateful for the latitude in dosing, and I also feel the weight of that responsibility.

The day continues: Mary Ann slept until about 2pm.  I got her some lunch.  She did reasonably well at feeding herself.  She still is not eating enough.  I convinced her to let me help her with some cake after lunch.  She kept putting the fork to her cheek instead of to her mouth.  She was resisting my help, but eventually I was able to get most of it in her mouth  She managed a snack of ice cream later.

We got to the grocery store!  I was hoping we could get it done.  Since she is in the wheel chair, mobility is not an issue when going to the grocery.  I push her with one hand and pull the grocery cart behind with the other.  It is a little tough on my wrists, especially when she drops her feet to the floor and I am pushing against rubber soles on a tile floor.  Years ago, she used one of the motorized carts.  We gave that up.  There were too many displays put at risk by a driver with spatial issues.

We brought home Sesame Chicken from the Chinese counter in the store, so supper went pretty well.  She went to bed at about 7pm and has been sleeping pretty soundly since.  The first couple of hours after she goes to bed are usually pretty good. I will continue this post tomorrow with a report on how the night went (way more information than any who read this blog actually want or need).

Next day (Friday):  The night wasn’t too bad, but it was another early morning with multiple trips to the commode in the wee hours of the morning and finally up before 7pm.

She ate a good breakfast with my help on the bowl of cereal.  After a while in her chair she wanted to get dressed.  Immediately after getting dressed, she got back in bed for a nap.  That was about two and a half hours ago.  She did get up once for a trip to the bathroom.

The issue of fainting continues to be a concern.  She said that she has been dizzy the last couple of days.  That is usually from the low BP.  I tried to take her blood pressure while she was lying in bed this morning, but it didn’t register on the electronic monitor.  That usually means it is too high for it to measure.  BP is usually highest when lying down, since the heart is not pumping against gravity.

While she hasn’t actually fainted today, she came close to it once when I was trying to get her to the bathroom.  She also has seemed to be dizzy at least a couple more times.  I suspect that the switch to the higher dose of Midodrine will be needed.  I am giving it another day to be sure.

The day continues:  After getting up from her nap, I discovered something mightily irritating.  We had to start using new disposable underwear today.  Kroger’s generic has worked very well for us.  They have just discontinued the combination male/female one for new gender specific ones.  The same size and weight as we used before, but in the new female version managed to leak.  It happened twice.  All her jeans had to be washed.

I can only conclude that someone in the Kroger braintrust decided that it would be better for sales if they marketed gender specific disposables.  That would be fine if they had bothered to make them in a way that actually accomplished their purpose.  To those of us who use them, it is no small inconvenience.  The small amount it took to leak the two times it happened today suggest that a long nap or a long time between trips to the commode during the night would provide enough leakage to demand changing the bedding and washing the linens, as well as whatever she was wearing.

I took them back to the store, got my money back and bought the Depend’s brand in hopes that they will work better.  Even though they also are gender specific, the appear to be constructed in a way more like the generic male/female ones we were using.  The Depend’s brand, of course are $12 and change versus the $9 and change price for the generics.  We buy three or four packages every time we go to the store.  There goes the grocery budget.  We will soon determine if the Depend’s are adequate to the task.

The good news is that I found part of a package of the old generic ones in the bathroom closet.  Hopefully that will get us through until tomorrow.  I change the disposables often to protect against urinary tract infections.

Mary Ann was up for a while this afternoon, after her long nap.  She ate a good lunch, lots of left over Sesame Chicken and a huge piece of cake with ice cream.  We were able to run a number of errands with her in the car while I did the errands.  She is now down for her third nap.  It didn’t begin until almost 5pm.  It is now almost 7:30pm.  She has had no supper.  I don’t think there is a chance there will be much sleeping tonight.

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.

Advertisements

Her head is hanging over the side of the transfer chair resting on the table next to it.  I suggested that she go to bed, but she insisted on staying there for another half hour.  That half hour will be up in a few minutes.  I wlll take a break and get her into bed in a moment.

After a restless beginning last night, sleep finally came and stuck around.  There were only a few commode trips after she finally settled.  She chose to sleep in until about 9:45am.  That rest seemed to help her alertness and responsiveness.  She has often put her head down on the table today.  I think the restless nights and early mornings have finally caught up with her.

I am heading off to get her to bed now.

She is in bed and already appears to be asleep.  It is too early to tell, but I certainly hope she sleeps well.  She needs the rest.

When the phone rang this morning it was the call I was expecting from the Cardiologist’s Nurse.  She had in hand the reports from the echocardiogram, the carotid sonogram and her blood work.

The call was another encounter with realities that are not visible.  Probably the most serious concern is the increase in the severity of her Pulmonary Hypertension.  That is the disease that took the lives of those who had taken the diet medication called Phen-Fen (sometimes designated in reverse, Fen-Phen).  Pulmonary Hypertension has been a part of the array of Mary Ann’s diseases for the last two to three years.  It is a funcion of the high blood pressure, which is, of course, raised by the Midodrine.  Any treatment would involve medications to reduce her blood pressure, bringing on the return and probably increasing the frequency of the fainting spells.

As last summer’s posts reveal, the fainting spells lower dramatically our ability to function.  Gratefully, both Mary Ann’s Cardiologist and her Neurologist understand the dilemma well and respect our decisions on how to proceed.

As I mentioned a number of posts back when reflecting on the report we had received on her blood work, her kidney function also has declined in the last six months.  She is now only one point away from Stage 4 (of 5 stages) of Chronic Kidney Disease.  A couple of years ago, her Nephrologist agreed that any treatment would lower her blood pressure, creating the same problem as the treatment for the Pulmonary Hypertension.

The Cardiologist’s Nurse said that the lesion in her left Carotid is still not past the 50% mark, which is the point at which the need for surgery comes into play.  She mentioned that there is a build up on her right side also.  I don’t remember whether that has been mentioned before.

The Nurse confirmed that there is leakage in more than one heart valve, including the Mitrovalve.  That regurgitation seems to have worsened some, but the language of the tests was not clear on that issue.  At our last appointment with the Cardiologist six months ago, the leakage was not bad enough for the surgery option to be up for consideration. There are also enlarged chambers in the heart, especially the left Atrium.  That problem has worsened.

All of the above has been factored into our consciousness at some point already in the past.  Hearing the results of the tests bring it all to the surface.  My questions always probe the rate of change.  This set of test results seem to indicate a more pronounced decline that in the past.

I plan to fax the Neurologist to probe further any treatment options for the fainting that might not raise the blood pressure.  At one point he mentioned an off label use of a drug called Mestinon.  The Cardiologist was unfamiliar with it and unwilling to prescribe it at that point.  I may try to get them to talk with one another about that or other options.  Getting doctors to talk with one another is not always an easy thing to accomplish.  They are both good doctors — maybe it can happen.

On the matter of the quality of life and the health of this Caregiver, the power of the Alien possession is now getting scary.  This is the Alien from planet Pedometer Prime who, as in the movie the Body Snatchers, is trying to change me into some sort of walking, exercising pawn.  This will frighten you.  Mary Ann and I made an afternoon run to the store for something.  Afterward, I offered to get some ice cream.  We went to Sheridan’s Frozen Custard for a what they call a concrete.  The one of choice is made with chocolate frozen custard with pecans mixed in.

Here is the terrifying development.  As we approached Sheridan’s, the Alien simply took possession and overpowered my will to eat ice cream.  Those of you who know me well (or have been following this blog) understand just how horrible this was.  I got Mary Ann a concrete as described.  Then the Alien took over the car and drove it to Cedarcrest where I walked the path while Mary Ann ate her treat.  It is a miracle we made it safely.  I certainly had no control over that car or, at the very least, we would have veered left at 17th and headed for Maggie Moo’s.

If that is not horrifying enough, the Alien had already forced me out to walk in the neighborhood early (for me) this morning while Mary Ann slept.  Keep alert, you never know when one of those Aliens will try to take you over too!!

By the way, Mary Ann actually said she liked what I made for supper tonight.  There were a couple of pork chops in the fridge recently thawed and needing to be cooked.  We had some red potatoes, onions and fresh broccoli in the there also.  I cut up the potatoes and veggies and put them on a foil covered cooking sheet (I hate cleaning pans).  We had some Hendrickson’s dressing and marinade that we have used in the past and liked.  I tossed the veggies in it.  Then to make the food preparation easier, I put the pork chops in a baking dish and covered them with the same marinade.  Both dishes went in the oven (375) for almost an hour.  I really liked the meal, but then I like everything.  Mary Ann only ate the meat, but volunteered at one point that it was good.  There is such a feeling of victory when something has passed muster with those finicky taste buds!

Just in case the Alien attacks again in the morning, I had better settle in for the night and get some rest.

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.

There has been almost no fainting today, but at what price? 

It appears that the increase in Midodrine, a medication that raises the baseline blood pressure, has moved Mary Ann back over the threshold to the ability to stand up and walk without fainting due to a sudden drop in her blood pressure. 

Earlier today, our Cardiologist had Mary Ann come in to have a Holter Monitor hooked up to a number of leads that had been put on her.   If I understand correctly, the monitor is a miniature EKG recorder (Electrocardiogram).  The pattern of Mary Ann’s heart activity is recorded for that twenty-four hours.  We have a log on which we are to record the time of and describe any symptoms, in her case any fainting episodes (Syncope).  The Cardiologist will be looking for any irregularities in her heart beat during the symptoms.  Mary Ann has had this test two other times in the last three years.  If I remember correctly what the Doctor said, there were no irregularities those two times. 

One of the results of the timing of the increase in the dosage of the medicine is that it is working well enough to all but remove the episodes that are to be monitored. 

Here is why the title of this post is “Living on the Edge.”  I asked the Tech today if he would check Mary Ann’s blood pressure since the increased dosage of the Midodrine might be raising it too high.   In fact, I asked if he would first take it while she was lying down.  He did so.  It measured 240/110.  He had a look on his face that was mild shock.  I asked him if he would take it with her sitting up.  He did so.  It measured 248/118.  I was a little surprised since I thought it would lower some.  Then I asked him to take it after she had been standing for a few moments.  He did so.  It measured 140/70. 

The Tech was pretty surprised by the rapid change.  He said that in his twenty year career as an EMT and Clinic Tech, he had never seen anything like it before.  We feel so special!! 

Apparently, Mary Ann’s blood pressure needs to be kept far too high to keep it from going far too low.  When I measured two days ago it was 165/85 when she was sitting down, but when she stood up for a few moments, she fainted and was out cold for many minutes. 

The high blood pressure has weakened her heart and diminished her kidney function significantly.  Gratefully we have much more kidney capacity than we need, so she is not yet in serious danger because of the diminished kidney functioning.  As the Nephrologist said, she is likely to die with that problem, not from it. 

I guess for some, living on the edge makes life exciting.  I am here to say that Mary Ann and I would gladly accept a less exciting life!

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.

She sat on the bed,  fainted, and just slipped off on to the floor.  She had fainted moments before on the toilet stool.  I got her on to the bed, grateful for the physical strength that remains in this small in stature, 66 year old, pot-bellied frame. 

I finally just laid her down on the bed to nap.  It was her second nap of the day.   The third one came early in the evening.  We did manage to get out for pancakes during the mid-afternoon. 

As is obvious to those who read these posts, this story is getting to be an old one.  It is beginning to suggest that the Autonomic Nervous System is just unable to sustain her blood pressure consistently.  The muscles around her arteries just won’t respond as they should, at least as quickly as they should. 

We have increase the medicine that raises the blood pressure, but have to be cautious about that, since years of high blood pressure have already weakened her heart and kidneys.  The Cardiologist will get another call on Monday. 

The Cardiologist will want to know what her blood pressure has been running.  It is no small task to get a read on her blood pressure.  The battery operated blood pressure monitors are pretty much useless when trying to measure Mary Ann’s blood pressure.  More often than not, there is just an error message.  Either her BP is too high and cannot be measured, or the dyskinetic movements create noises in her body that confuse it. 

I have purchased a stethoscope and pressure band to take her blood pressure myself.  I can get the meter pressure high enough, but the variety of sounds have frustrated my ability to get a good reading.  At times I have been able to do it — not today.  Gratefully we have a parish nurse at our congregation.  She cares very much for Mary Ann and will come and help whenever we need her and it is possible for her to come.

I called Parish Nurse Margaret, who came over to take her blood pressure.  As always, she brought flowers from their flower garden and vegetables from their vegetable garden. 

She arived shortly after Mary Ann had taken her mid-day dose of the blood pressure raising medicine.  Sitting in her chair, her BP was 140/70.  Then we walked into the bedroom to test the effect of standing up and walking.  She sat on the bed and Margaret took it again.  Mary Ann was on the verge of a fainting spell.  Her BP was 108/78.  The lower number was higher than I expected, but she said that when the two numbers are too close to together it can cause the fainting.   

Then Mary Ann laid on the bed while her BP was taken.  That is when it is usually highest, since gravity is not pulling the blood to her feet.  I wanted to measure her BP at what would be likely to be its highest point.  Knowing that measurement would help provide the Cardiologist with the information needed to make a good decision on whether or not it would be safe to increase the medicine that raises her BP to keep her from fainting.  Lying down her BP was 142/100. 

After that Mary Ann moved into her transfer chair, and we moved to the living room.  Margaret took her BP two more times as we talked for a while.  Those readings were 140/80 and 150/8o.  By the way throughout the measurements there were no missed heart beats and her heart rate remained steady at 60 beats per minute. 

With all this information the question remains, is her Autonomic Nervous System’s ability to control her blood pressure simply broken, beyond correction, or can meds provide a return to the quality of life we had a few weeks ago.  A question that follows along beside that one is, will my physical strength be adequate to hold her up with one arm while she is fainting as I pull up clothes with the other hand after using the commode.  When will we pass the limits of my ability to handle her physically?

At the moment, I am still one tough cookie.  I can do it now.  That is all I know.  It is all I need to know.   I’ll deal with tomorrow when it arrives.    I have neither the time nor the energy to waste worrying about what it might 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.

This morning Mary Ann began the day feeling very weak and wobbly.  She had fainted more than once during the night at commode times.  She fainted more than once this morning.  She took her pills with juice and yogurt, but was not interested in the usual cereal afterward.  She just wanted to go back to bed.  She slept for a couple of hours. 

For the rest of the day, she has been able to walk only very short distances until she either fainted or couldn’t go any farther needing to sit down.  She did manage to get to the car so that we could, using the wheelchair as usual, head to Perkin’s for pancakes. 

While she was restless and in popping-up mode after that through suppertime, she still could not walk more than a few feet without having to sit down.  That, of course, meant I was also in popping up mode. 

Today has not been unlike many days in the last couple of weeks.  She did seem weaker even than prior days in that period.  The question is the one that is always at least in the wings but now has moved to center stage again.  Is this a temporary decline or a permanent one, a new plateau on the journey down the Parkinson’s Disease and Parkinson’s Disease Dementia path? 

I realize that worrying about whether it is permanent or temporary accomplishes nothing, but it just seems to be time for a little fretting on the matter.  What is especially of concern with this disease is the rate of decline.  We understand there is one direction this is going.  The rate at which it is traveling is at issue. 

The hallucinations are becoming stronger and more relentless, and the fainting is returning with a vengeance.  Moments of confusion seem to be more frequent.  All of those things are around all the time, so the challenge is to measure their intensity and frequency.   That is easier said than done since changes for the better and for the worse are incremental and seldom consistent.  

It is hard to know when the change is enough to warrant calling the Cardiologist or Neurologist.  If we do, what will either of them do that is not already being done?  We know the cost to be paid in destructive side effects if we raise levels of medication to control the problems as they worsen. 

There is no stopping the progression of this disease.  None of the medications currently available have the p0wer to slow the disease process, at least by the time the disease reaches this stage.  We have pretty well exhausted the options for controling the symptoms.  We are now left to the vagaries of the the daily and weekly and monthly ups and downs of the disease itself. 

There may be a change for the better coming, who knows, certainly not I.  We will continue to do as much as seems doable.  We have a major trip scheduled at the end of this month.  My hope is that the current apparent decline does not put that in jeopardy.   Maybe this time, what goes down will come up again on this roller coaster 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.

Almost done!  The four level waterfall needs only the one watt light fixtures that produce twenty watts of light at the base of each of the four levels.  They will be installed tomorrow.  

The plants are now all in place.  Brad even brought some from his own yard to put in an area above the lined portion, his gift to us.  His Dad has Parkinson’s and we have come to know his parents at the Parkinson’s Support Group meetings.  Brad has put forth extra effort at every turn.  The end result is more than Mary Ann and I could have hoped for. 

The Mallards are now in duck heaven – our back yard.  They were hanging out there last evening and came today five minutes after Brad and his crew left. 

I also hung out on the deck last evening listening to the waterfall as rain and thunder and lightening came through.   While it was raining I sat on the portion of the deck that is covered with a section of the roof.  The wind cooled the air so that the experience was wonderful. 

Mary Ann and I spent some time this morning on the deck before the day heated up.  I got her out to a lawn chair to sit for a while.  Then she got up and walked to the rail to get a better look at the waterfall.  As she started to faint, I tried to pull a chair over behind her.  It didn’t work.  I let her down to the deck.  As she lay there, I went into the house and got the transfer chair so that I would eventually be able to get her into the house.  During the morning, before, and then out on the deck she had had some small fainting spells.  The one at the rail was a substantial one, one that turns into a sort of siezure.  As usual, there was some intestinal activity that followed.  Some time I intend to ask our Gastroenterologist for an explanation of that phenomenon. 

Last night, the third in a row, Mary Ann had trouble settling down and getting to sleep.  As expected, the hallucinations have been a little more active the past few days.

The reason I titled this post “Caregiver needs Deck Therapy” is that today was a pop up day.  Most of the times I went out to talk with Brad and the crew about something, I very specifically asked Mary Ann to stay seated while I was outside.  Of course I made sure that she had ice water, the television was tuned to something she liked, and that she didn’t need to get to the bathroom.  For the most part she did as I asked during those times. 

Other than that, Mary Ann popped up every few minutes.  When I answered the phone or made a phone call, she was up.  When I went into the kitchen to put things in the dishwasher she popped up.  When I tried to get food ready for her she popped up.  When I went to the bathroom she popped up.  It seemed that pretty much every time I sat down she popped up. 

As I have shared many times, falling is a major issue.  The fact that this was also a fainting day made it even more challenging.  Last I heard, aspirating food and falling are the two most likely events to end the life of someone with Parkinson’s.  People don’t die of Parkinson’s itself.   Mary Ann was falling generally more than once a day until the torn stitches a few weeks ago.  Since then she has fallen very seldom, at least by the pre-stitch-tearing measure. 

I realized today the reason the falls have diminished so much.  I am moving very quickly to be right there whenever she stands up to walk.  I offer my elbow for her to hold, thereby stabilizing herself while walking, or I put my hand gently on the gait belt she always wears so that I can help her regain her equilibrium if she gets off balance.  The A-V monitor helps me anticipate her getting up so that I can be there by the time she is up. 

The challenge is that I can’t keep her in view every moment.  The monitor has to be plugged in and within view for me to use it.  I can’t move it with me every time I walk into the other room, head down the hall just for a moment, or go to the bathroom.  At the first sound of movement, I move as fast as I can, sometimes even managing to get this sixty-six year old body to run, to get where she is before she falls. 

Today, I must have jumped and run thirty or forty times.  That is only a guess; it may have been a thousand times!  While as her Caregiver I should just take that in stride, if every day were like today, I am not sure I could do it.  Not long ago I used the metaphor of a marionette whose strings were being pulled by someone else as a  way to describe the feelings of being a full time Caregiver.  That was the sensation today.  She popped up and my arms and legs moved. 

I needed some time on the deck this evening.  The residual heat from the day made it much less bearable than last evening.  That respite and this post are my way of settling down and allowing the frustration to dissipate.  I understand that Mary Ann’s popping up is not a malicious attempt at making my life difficult.  In her mind it has nothing to do with me.  It is my problem that I come running when she gets up.  I suppose, if that is what she is thinking, she is right.  Nonetheless, the truth is, I need to keep her from falling to the degree it is possible not only to keep her safe but to keep my life from becoming more difficult.  If she hurts herself, it hurts both of us.  And, yes, while in my most rational moments I recognize that the disease is the cause of this annoying behavior, sometimes it feels as if she doesn’t care what impact her actions have on me. 

Today is done.  There have been many good moments along with the frustrating ones.  I celebrate the new retreat center behind our house.  I suspect that there will be need for some Deck Therapy tomorrow.  Then there will be lights!

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.