July 2009

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. 

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A while ago, I asked our Children, their Spouses and our Grandchildren if they would be willing to write something from their perspective on our situation.  What will come in this and other posts in the near future will be their responses to some questions I proposed.  Our Son, Micah will turn thirty-seven years old in a few weeks.  He is married to Rebecca.  Their daughter, more importantl, our Granddaughter, Chloe, is entering the Sixth Grade this fall.  Here are his responses.

How does it feel from your perspective to see your Mom and Dad’s situation?
I think it’s something that sneaks up on you. Since the changes have happened over such a long period, it’s only in the lowest dips of the rollercoaster when it seems most obvious how difficult things can be for you both. As I’ve read your blog and remembered with you the struggles of the past years, I realize how much has changed. But the passing of time seems to mask some of the changes and challenges, constantly (but subtly) shifting what “normal” is for you both. The hardest part for me is my fading memory of mother as an active, vibrant part of my life. A child’s view of their parents comes from that selfish “how does it affect me” perspective, so when I look back and try to remember the person who taught me how to throw, the person with whom I would cook – and joke! – I yearn to remember more of it, and mourn the loss of those disappearing memories. It’s selfish, to be sure, but I (like any child) want to continue to actively share my life, family, and experiences with both my parents, and I hate that the Parkinson’s and Dementia steals many of these opportunities away.

Stepping back a bit, when I see you both grow older, I worry for both your safety and your quality of life. Caregiving can’t be what either of you planned in your retirement dreams. I wish a wider world for both of you, knowing that your circumstances make for a very small world. I’m glad that you continually push the boundaries of travel and mobility, because they are luxuries you won’t always have. I hope you continue to push those boundaries even as they slowly constrict. You both choose to experience life – not just live it – in spite of your challanges. And while I hope for all these things, I worry about the consequences of living on the edge of safety and security. Having rushed out to Arizona when we thought mom was not going to make it, I can still say that I’m glad you both continue to be as active as you can. And I live in terror of the possibility of dad being unable to care for mom, and what the consequences would be for everyone – including mom. And I hope that there are enough people coming by the house often enough that if something bad ever happened, it wouldn’t be long before help was there (that’s kinda morbid, huh?).

How do you see your unique role in relating to it?
I work hard to treat mom as I always have, though I know it has become harder and harder to do so. The occasional caregiving is difficult for me since there is a palpable discomfort for mom and me when things like bathroom duty come up. I don’t know what it’s like for Lisa, but I know that mom apologizes any time I need to help her with personal issues. I don’t mind doing it at all, except for the emotional discomfort it causes. We soldier through it, and it’s a small price to pay for the quality time we get to spend together when I stay with her. So I guess I see my role as trying to treat her the same way I always have, in an effort to retain some normalcy in our relationship. Now that I write it out that way, it sounds like blantant denial. My intention is to maintain the lightheartedness we’ve always shared, in spite of the obviousness of her daily challenges. Asking her how she’s feeling, and cautiously assisting her and anticipating her needs feels like I’m giving more attention to the Parkinson’s than to her. While I know the two are inseparable, I guess there’s still a part of me that needs to treat mom like mom first, and like a Parkinson’s sufferer second. But I can also tell you that after re-reading this paragraph, it sure sounds like I have some issues to deal with 🙂

What would you tell other adult children whose parents are dealing with chronic illness?
Judging by my previous answer, I don’t know what I’m one to be giving any advice!

How do you see the situation impacting the Grandchildren?
I believe that the grandchildren are resilient and accepting – they don’t know grandma any other way than she has been. Chloe once drew a picture of the family, and it included grandma in a wheelchair. I was a bit taken back by it at first, but quickly realized that that was the norm for Chloe – it’s not good or bad, that’s just how grandma is to her. I wish all the girls could know her for her wry wit, her quilting, and her cooking. But I’m so glad that Lisa’s girls got the chance to be around her for the time they were in town with you both. They may not remember it well when they are older, but they still will have had the time.

After I read Micah’s response above, I responded to him that the way he relates to Mary Ann is exactly the way he should.  I see her eyes light up when he comes over to talk with her and kid with her.  He relates to Mary Ann, the sharp, engaging, smart-aleck Mom he has grown up with, not to the Parkinson’s.  It brings out the best in her. 
As any who read this blog today and in the days to come will see, we have remarkable Children, Children-in-law, and Grandchildren.  They turned out better than we deserve.  We are just very grateful we get to have them as our family. 

It was a terrible sounding crash.  I had just gone into the kitchen to take my morning vitamins.  She had had breakfast and pills, was dressed, had been to the bathroom, was watching a television program she likes.  Normally, that is a safe time to walk out of the room for a moment.

Not this time!  It sounded horrible.  I ran out to see what happened.  She was not hurt.  That is the most important thing.  The table lamp was glass, gratefully, it had not shattered when it went flying.  Everything on the end table was spread out on the floor, the phone, a thick ceramic coaster was broken in half, a few other items that had been sitting on it were here and there.  The speaker on the stand next to the table had fallen to the floor.  None of it hurt her.

The end table itself was broken into pieces.  She wasn’t hurt.  That is the important thing.  It is just an end table.  Why did it upset me so??  People are more important than things.

It is odd that some things carry more symbolic significance than the thing or the event itself.  My Dad made the end table.  He was not much of a woodworker, but for at time after he retired he made a number of things out of some beautiful Black Walnut boards. There is a history that is embedded in that table.

My Dad grew up on a farm, but worked in an office his entire career.  Throughout my childhood, we went for rides looking for the perfect piece of property in the country to buy.  When I was eleven years old, he found it, twenty-six acres of woods and creek with a few tillable acres on the other side of the creek included.

One day when Mom and Dad were out there puttering, the weather changed.  They headed into a little seven by ten foot structure made of a few boards and some screens for staying out there on occasion.  When the storm ended, there were at least twenty full sized trees that had blown down, Oak, Ash and Black Walnut.  Three of them had fallen on three sides of that seven by ten, flimsy box they were in during the storm.

Those trees were cut into three-quarter inch thick boards and then dried at a local lumber yard.  The Oak and Ash trees became board and bat siding on the house they built to move into when Dad retired.  The Black Walnut boards provided paneling for the basement and end tables and book cases and lamps and candlesticks, a coffee table, and other items that reside in the homes of their children, the five of us, no longer children since now we range in age from 66 to 80 years old.

It is just an end table.  It’s demise is a reminder that nothing in the house is safe.  The fall itself is another reminder that we are out of control here.  I reacted with loud questions, “why didn’t you push the button?”  It sits right by her hand.  I come and help when that electronic doorbell sounds. She has been fainting numerous times a day in the last couple of weeks.  I have asked again and again and again that she push the button, that she let me help her when she is walking.

Seeing Mary Ann lying on the floor, seeing the broken table, a lamp that could have broken and cut her, carried with it the painful reminder of how close we are to not being able to sustain this here at the house.  I couldn’t stop it from happening.  She wasn’t hurt, the damage was not to her, just to material things.  I won’t tie her in the chair, but short of that, there is no way to stop her from putting herself and our fragile life here at risk multiple times a day.

A Volunteer came over shortly after this happened.  She has taken the table to friend who will look at it to determine if the pieces can be put back together in some form or another.  We will see.  Then I lunched with a friend who has finally had to move his wife to a nursing home because he could no longer do the very things we are trying to do here.  The challenges of sustaining that arrangement at the nursing home are also daunting.  It is difficult to find the boundary between being able to manage at home and needing to move to residential care.  It is analogous to the plight of the frog in the water on the stove, heating up until he boils, never realizing the danger until it is too late.

While I am physically able to care for Mary Ann here, I will do so.  The one dynamic that complicates that detemination to care for her here is the ability emotionally to do it.  I released some frustration by talking loudly about my feelings when I saw what happened.  Talking with a friend with similar circumstances helped.  Sitting for an hour in my beautiful spot on the hill, watching deer(among them twin fawns), listening to music, thinking, praying, all helped.  Thinking about and now writing this post helps.

As always, the hardest part of an event like this morning’s fall is handling the fact that I am not the sweet, thoughtful Caregiver who is always nurturing, helping without a word of complaint, the Caregiver I should be.  I shouldn’t give a rip about an end table.  She didn’t want to do it.  Later in the day she said, “I am sorry I broke the end table.”  It just happened.  I can’t blame her, but, just as she can’t keep from popping up to walk when at some level she knows she can’t do so without putting our current life at risk, I can’t keep from reacting in that first moment with frustration knowing that it didn’t have to happen.  I need not to pretend that I don’t have feelings of frustration and bury them in that pretense. Trying to do that really would make me crazy.

On the positive side, once its over, we just get on with whatever needs to be done.  My loud talking provides an immediate safety valve release of frustration.  We return to a loving relationship.  The glass lamp is now at the other end of the couch in a place she very rarely goes near.  There is a floor lamp taking its original place.  For the moment in place of my Dad’s table there is an end table that I made, a simple one that should be easy to repair if broken.  I will begin a search for something to put there that has no corners into which she could fall, something with room for the phone and a few items to reside.

It is just an end table, but at the same time it is a symbol of much more in our system of survival here, physically and emotionally.  The table is broken, we are not.

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It was disturbing to look directly at her face during a severe episode of fainting.  Her eyes were open but completely blank and empty of any indication of her presence.  She was fighting for air, breathing through her nose, making the ugly sounds that usually come when she goes out completely for a time.  I don’t suppose it was any worse than the worst we have experienced almost daily lately, but this is the first time her head was back so that I could see her face.  Mine was only inches away since I have to use my body to keep her from falling forward.  I guess every other time, her head has been down, so that I only could only see the top of her head or her forehead.  I always thought her eyes were closed during these episodes. 

I guess it was just an encounter with the full reality of what goes on when someone faints.  It is hard to watch her fighting so hard for air.  I am grateful that she never remembers the episodes. 

With that said, actually, today started out better than any in the last couple of weeks.  She had no fainting spells from the time she got up and had pills and breakfast, through getting dressed, and some intestinal activity that has almost always included or ended with fainting.  She did decide to lay down for the usual morning nap, but it was not precipitated by fainting as has been so most of the last days. 

The major fainting spell came after the nap.  There were some other episodes during the day, but not as intense as the first.  Somehow during these last two days  it has seemed as if we are on an upturn from where were heading through last Sunday. 

As you can tell from what I described at the beginning of this post, it is not much of an upturn if it is one.  Especially this morning before the severe episode of fainting, I was feeling as if Mary Ann was rallying.  She may still be doing so.  The thought of her rallying brought to mind something I have gone through with others and have experienced myself. 

As much as any of us who is caring for a Loved One with a chronic degenerative disease or a terminal disease wants our Loved One to improve rather than decline, there is an odd sort of emotional stress that comes with the improvement. 

What happens when there is a decline is that there is a sort of grieving that goes on.  There is a jouney through some or all of the stages of grief.  If the decline is severe and long enough, the Caregiver can make it all the way to acceptance. If the Loved One then rallies, it is sometimes hard to “unaccept” the decline. 

I have been coming to accept that we are in a new stage in the disease process maybe one that is leading closer to the inevitable conclusion sooner rather than later.  Since we have lived on this roller coaster for so many years, I do not simply let go and commit to anything about how permanent a particular change is or how far along we are in the progression of the disease.  It is still hard to let go of the feelings that start to grow in the gut and then realign with a new reality when things improve. 

At the moment, I am not sure how far the decline has taken Mary Ann, whether it is turning around, whether we are at a new normal, whether meds can bring her back to a former level and, if so, for how long. 

The truth is, we don’t actually need to know the answers to those questions.  We both just need to deal with whatever comes each day, making plans, fully aware that we may not be able to work the plans we have  made. 

On this roller coaster, it is scary when we are dropping down a steep decline in the ride, and it is a struggle to adjust when the ride turns us around takes us up out of that decline.    Gratefully on the upswing or downswing we feel secure in the spiritual grounding that sustains us.  It frees us to have all the complex emotions and fears, live with them and through them, without despair.  It is just our life.  The specifics may differ, but it is not unlike the lives of most of us.  There are ups and downs and in betweens.  It is just life. 

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There is a vulnerability that Caregivers don’t care to think about.  What happens when they are not well?  The needs remain.

Today was a good news bad news sort of day.  Neither the good nor the bad was very dramatic.  The good news was that while Mary Ann did have fainting episodes today, they seemed less often and less severe than the last few days.  Even after having a fainting episode that normally would result in a long nap, she chose to stay up. She didn’t nap until the afternoon.

I had an errand that would have needed outside help to accomplish on time had she napped in the morning.  She was able to head out in the car with me so that I could do the errand.  We picked up some Long John Silver’s fish and chicken for her while we were out, came back and she ate it at home.

The bad news was the recurrence of the occasional bouts I have with Esophageal Spasms.  They are very painful, come without warning, and last many hours.  They just happen.  There is not really much in the way of treatment for it.  They don’t come very often, a number of times a year, and they are not really dangerous.  As far as I know they don’t do any long term harm.  The just hurt very much.  The pain is in the center upper chest and comes in regular waves with each peristaltic movement.  I think I remember learning that those movements are about eight minutes apart.  I haven’t measured the time between waves of pain.

When the spasms come to spend time with me, it is pretty tough to focus on anything else.  Eating or drinking is not an option.  If I am free to do so, I raise the head of the bed, turn on the television in the bedroom and hope there is something interesting to provide a distraction.  Current circumstances don’t allow that option, at least not for very long.

While there were some painful times today, the spasms were not as painful as they have been in the past.  On a scale of one to ten, they can regularly move to eight or nine and flirt with ten.  Today was close on occasion, but not that intense most of the time.

When those spasms come, the experience reminds me just how vulnerable we are and how fragile our system is.  A Caregiver does not have the option of saying, “I am not feeling well, so don’t need anything for a while.”

Actually, anyone who has served as the primary caretaker of their children knows exactly how this works.  When you have a cold or the flu, after the first wave of the kids wanting to do things for you, there is a return to constant demands from the kids for help, no matter how bad you feel.

I have to say that today went relatively well.  It was more just a reminder of how fragile our system is, how vulnerable we are should my health falter.

At least Mary Ann’s slight improvement today keeps alive the hope that this downturn is not permanent, or at least we may have bottomed out for the moment.  Again, tomorrow is another day.  We will see what it brings.

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The decline continues as there is still no evidence that increased medication is impacting the multiple episodes of fainting.  In the morning, Mary Ann has continued to faint even while just sitting in her chair.   After the long morning nap there is some improvement, but each day there seems to be less and less improvement.  She can’t stand up for more than a minute or two without dropping back into the chair.  Occasionally later in the day she can make it twenty or thirty feet.  

Today I had the wonderful privilege of Ordaining into the ministry a young man I respect very much.  It was a powerful and meaningful experience for all of us.  The Service went well.  It was especially emotional since his Mother had died a few years ago of a form of Alzheimer’s Disease.  She would have been proud beyond words. 

Having been retired for a little over a year now, today has clarified something about the nature of the Pastoral Ministry.  Leading worship services, when done weekly is no small task, but the regularity helps, especially for someone who is terrified of making a foolish mistake in public. 

As today approached, I found myself deeply apprehensive, especially since it was an Ordination service, different from the Sunday norm.  I couldn’t count on auto pilot to get through it.  It felt like what I would imagine a tight wire artist would feel like if after a year of not walking the wire, he was stepping out on a wire stretched over a canyon with no safety net.  I realize I wouldn’t actually be hurt physically if I made some foolish mistake, but rational thinking has little impact when the fear center takes over. 

The stress of fears about where Mary Ann’s disease is taking her so quickly these last days and the stress of deep seated apprehensions about the Service today converged, making for a very difficult weekend.

It is painfully obvious, that stress complicates caregiving whatever the source of the stress.  It took a great deal of effort to maintain a level of patience through this time.  It helped that by now I know myself well enough to recognize the real seat of my frustration.  It is not at Mary Ann, it was simple fear struggling to find a way to express itself.  

As for today, there was a very capable Volunteer from the congregation during the morning hours, allowing me to do some preparations for the service.  Then this afternoon, while I was at church before, during and after the service, doing what had stirred the apprehensions, there was a paid Companion Care person from a local agency, Home Instead.  She had been with Mary Ann most every Sunday morning the last year or two before I retired.  I could leave the house confident that Mary Ann would be in good hands while I was gone.

One significance of doing the Ordination today is that a month from now will be the fortieth anniversary of my Ordination.  Forty years is the normal length of the career of a pastor as a full time paid worker.  I finished my professional career, Karl began his.  All sorts of emotions were stirring as he took over the last portion of the service as an Ordained Pastor. 

One of the most powerful moments was the choir singing a piece called the First Song of Isaiah.  It is a piece strongly associated with Karl’s Mother while she was alive and at her death.  As they sang and I thought of Tina, my fears about where Mary Ann’s Parkinson’s is now taking her folded into the moment. 

We are on a roller coaster that may go up and down many times for years to come before we move into the endgame.  There are moments when the stresses converge.  I am grateful that we have a framework built on deep spiritual footings.  That is what allows us to live each day as fully as possible in the face of whatever comes our way.

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.

It is becoming more likely each day that this decline is not temporary but permanent.  Increased Midodrine to raise her blood pressure and move us across the margin from fainting regularly back to fainting occasionally has not yet accomplished its task.  We began the change in dosage yesterday noon.   The medication may work better as the days go by but it has a very short half life, so it should have worked by now.  We will see.

What is interesting to me is that when I referred to the change in our circumstances earlier today, Mary Ann seemed puzzled by what I was saying.  I realized that from her perspective little has changed. 

Mary Ann has no awareness that the fainting is approaching before it happens nor does she have any awareness after she comes around that it has happened.  I have asked her more than once if she realized that the last thing she remembered was standing up, and now she is on the floor or in her chair.  She hasn’t always believed that she sometimes fainted — still has her doubts.

It is a good thing that she is not distressed by what happens.  The number of times she faints in a day does not seem to impact her in any way unless she has hurt herself during one of them.  As I have mentioned in the last couple of posts, she does often get very tired, maybe sort of tune out, and then nap, but napping doesn’t seem to register as a consequence of fainting. 

Her perception of the situation seems not to have changed while my perception has changed.  It is, of course, more than just a perceived change.  As the Caregiver, I am the one who holds her up in the chair or on the toilet stool or on the commode when she faints there.  I am the one who lets her down to the floor and/or picks her up when she falls from a standing position to the floor.  I am the one who marks time while she is napping two or three hours, watching her on the monitor so that I will be there when she begins to move.  When she awakens, she is just surprised at how late in the day it is. 

We have views of her reality that are 180 degrees apart.  She is looking from the inside of her circumstances out.  I am looking at her situation from the outside.  She seems far less distressed by very many of the problems she encounters than I am.  She is the one with the physical and mental limitations, but she reacts with equanimity.  I do not have the those same limitations, but I feel more strongly the frustrations of the roller coaster ride we are on.  I see what she can’t see in regard to what we are going through as a household. 

The role of a Caregiver is to create an environment for his/her Loved One that is comfortable and secure so that the Loved One experiences life as fully and completely as circumstances will allow.  By making sure there is food whenever wanted or needed, clean clothing to put on and help putting it on, personal tasks accomplished, a little variety and social contact, the Caregiver provides a sort of cocoon of comfort in an otherwise impossible situation.

While this Caregiver does lots of whining and complaining, for the most part, there is little awareness of just how much goes into creating that cocoon of comfort and security.  The declines are sometimes masked by the Caregiver adapting to the changes in a way that minimizes the impact on the one declining. 

She is pretty much unaware of the decline she is in.  That seems to me to be a good thing.  She is not experiencing pain and distress and fear triggered by the recent changes.  Her world is still in place — almost no changes from her perspective. 

Deck Therapy Addendum:  I was sitting on the deck just before 9pm toninght and out of the corner of my eye, there came mom and young’ns coming on the sidewalk and heading under the deck five feet from where I was sitting.  In fact I got up and watched from the deck just above as the last one squeezed through the lattice.  I scolded them and they came out right under my nose and left the way they came.  I sat again, was in and out of the house a couple of times, then sat out there again.  As I was sitting, there between the posts by the gate off the deck was a little face sticking its nose through looking at me, checking to see if I was still there.  That time I got the hose and squirted under the deck from the other side.  I couldn’t see if and when they left, but they weren’t visible for the next half hour that I sat out there.  They are bold as brass.  I brought into the house (as I did last night) the feeders they rob.  I can’t afford to keep up with the quantity they consume.

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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