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.

When I asked ourt adult children to share some thoughts on their view of our situation and their role in it, I included some questions for their spouses in case they felt comfortable commenting. 
Our Son-in-Law, Denis (yes with one “n”) chose to comment.  Our Daughter and Denis have been married over ten years.  They are the parents of two of our Granddaughters, Abigail (6) and Ashlyn (soon to be 5).   Denis is the youngest of ten children and is great with children, having had very many nephews and nieces to deal with over the years.  His moral compass is strong and healthy.  He initiated the decision that resulted in their family (Lisa, Denis and the girls) moving here (from Kentucky to Kansas) to help us out for the last two years before I retired (which is now a full year ago). 
Here are his comments:
How do you see Mom and Dad’s situation impacting Lisa and Micah respectively?
Since the Parkinson’s has been around so long, I think Lisa has accepted the presence of the disease.  Obviously she would love nothing more than for the disease to just go away, but that is not likely to happen.  It is very hard for her to see her Mom in such condition when in the past she was so vibrant and quick witted.  She is mostly concerned about the impact on Pete and the difficulties of full time care giving.  Pete could be adversely affected physically when picking up MaryAnn after falls.  He could also be affected mentally from having to give constant care, 24hrs a day without much personal time.
What do you see as your role in the situation?
I feel I need to be as supportive as possible to Lisa…and MaryAnn and Pete.  Hopefully our time in Topeka was a good help in caring for MaryAnn.  I think it certainly was good for me, Lisa and the girls to have all the extra interaction with MaryAnn and Pete that being close by allowed.  Abigail and Ashlyn were able to create a closer bond to their grandparents and hopefully bring a little extra cheer to household too.  It has always been hard for me to communicate very well with MaryAnn given the disease.  I never did know her before it took over so much.  I like to think that our sense of humor would overlap a fair amount.  Both of you are most welcome to move to Louisville at some point if you are so inclined.  We could be of more tangible support that way.  I think my role is mostly to be a supportive son-in-law to Pete and MaryAnn.  Be there for support in times of critical need…mostly in sharing Lisa’s warmth, energy and time with you.
 
What would you tell others in your position?
Educate yourself about the symptoms of the disease and the side affects of the medications.  This will help in understanding the behaviors of the sufferer and their needs.  Be as helpful and supportive as you can in those times when a crisis comes up.  Also recognize the burdens of the caregivers and the impact it can have on them.
 
How do you see the situation impacting the Grandchildren?
Like me, Abigail and Ashlyn do not know Grandma Tremain any other way than with Parkinson’s.  Yet I can’t help but think that interaction between MaryAnn and the kids is very valuable to them both.  I really think the girls see MaryAnn as “Grandma Tremain”, not Grandma who has a bad disease.  I don’t think they differentiate her in that way.  Its wonderful to see them accept MaryAnn as she is.
As is obvious when reading the comments above, not only do we have remarkable children but they have married remarkable spouses.  Our Daughter-in-Law Rebecca has impeccable integrity and common sense.  She is not only a support to our Son Micah but a caring presence to Mary Ann and me, a joy to be around.  She, Micah and our oldest Granddaughter, Chloe, live a little over an hour away from us.  Both Rebecca and Denis also add something in very short supply in our family — height.   For that we are very grateful. 
When Chronic illness enters a household, everyone is affected, spouse, children, grandchildren, siblings, parents, friends, all those connected to the one with the disease.  In a sense, everyone has the disease.  What is needed is openness, honesty, and support for one another as each is impacted in some way.  We celebrate that to a person, those who are family and friend to us have stuck with us and done whatever they could to help us and one another negotiate the journey we are on. 
Stay tuned.  A post in the near future will contain the responses of our Grandchildren.  From the mouths of babes!
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.

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.

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 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. 

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.

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.

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.

It was a perfect time to be on the deck.  The temperature was in the high 70’s and there was a breeze blowing.  There were some hazy clouds occasionally filtering the bright sunshine.  The deck was partly in the shade and partly in the sun.  The sound of the splashing waterfall echoed providing accompaniment to the raucus squawking of Grackles and Blue Jays.  I read and thought and pondered and read and pondered some more.  It was a wonderful couple of hours.

I got Mary Ann’ s breakfast and pills done; then showered, shaved (yes, even though I wear a beard), and dressed.  The plan was to head to the grocery and then out to eat.  She stood up from the transfer chair for a moment and flopped down into it.  Whatever the switch is that turns off her ability to function, it switched her off.  The plan dissipated and a long nap ensued. 

Adapting quickly to a change in plans has never been easy for me.  If I got into my mind what we were going to do, frustration was my usual response to being derailed, a disabling frustration, leaving me grumpy and annoyed.   Today, video monitor in hand, I just headed out to the deck and had a great time.  In some ways I am learning to cope with the vagaries of the Parkinson’s Disease and Parkinson’s Disease Dementia.

When Mary Ann awakened from her nap, I got her dressed and ready to head out for lunch.  When we started the often endless task of picking a place to eat, she popped up with one we had not been to in years, Red Robin.  It seems to cater to the younger crowd, with a sort of boisterous atmosphere and very expensive burgers. 

I was happy that a decision came so quickly.  I mentioned the possibility of splitting a sandwich since they are large and costly.  I remember the first time we ate there.  It had just opened and there were lots of folks waiting for lunch.  Our name was on the list, but it seemed that others who had come after us were being seated.  I went in and asked why we had been waiting so long.  Somehow our name had been skipped.   As we were being seated, a manager came over and said that because of the long wait, lunch would be on them.  That was music to these frugal ears (big, but frugal).  Giddy with the thought of it, I decided to buy a beer, a Black and Tan (Guinness and Bass in the same glass).  As I was enjoying my beer, a bartender came by with a Black and Tan looking for the person who had ordered it.  He concluded that there had been some confusion, and I might as well have it.  While I just couldn’t manage to get two full beers down in one sitting (college days are over), it felt sort of luxurious to have them both sitting there for me to enjoy.  We had just had two full meals, a Coke for Mary Ann and a couple of imported draft beers for three dollars and change.  Yes, I did leave a tip based on the full price had we paid for the meals. 

This time we weren’t so lucky.  We got seated right away.  I had talked about our splitting a burger before we went in.  Then as we looked at the menu, both interested in the Salmon burger (made with a Salmon filet, not a salmon patty), I asked Mary Ann if we should go ahead and split the sandwich.  She always eats half and we take the other half home.  The burgers at Red Robin are between ten and eleven dollars each.   She said no.  It surprised me, since her normal response would have been yes.   I asked again just to be sure I hadn’t misunderstood.  She again said no. 

We ordered the two meals.  She finds it easiest to eat a sandwich if I cut it in half, and then cut the half in half again.  A quarter of a sandwich is about all she can manage to hold with her hands.  The fingers stiffen and lose dexterity when she is trying to hold on to something.  When she was working on the second quarter, she said, “I thought you were going to eat the other half.”  I am not sure exactly what happened that we miscommunicated so badly.  Red Robins are particularly noisy, and Mary Ann’s voice is very soft due to the Parkinson’s.  Most of the time I end up reading her lips when we are communicating in public, or in the car (can be challenging when driving).  It was annoying to think that we were paying eleven more dollars than we needed to, but I have come to be better at accepting and adapting.

One thing, however, that I cannot seem to accept, to which I struggle to adapt, is the messiness that goes with the dexterity problems.  I find it very hard to deal with my reaction to seeing the sandwich squeezed in her hand until most of it falls on the table her lap or the plate, sauce running through her fingers and down her arm.   Notice that what is hard to accept is not the messiness, but my reaction to it.  The reaction is internal.  My actions were attempts at helping her get the sandwich pieces back in her hand, suggesting she use the fork, then afterward cleaning her hands with napkins and a wipe from her purse.  I know she was uncomfortable with the cleaning I did, since it seemed that she was looking around to see if anyone was watching.

The messiness bothers me more than it does Mary Ann.  Part of it is that I happen to have grown up in a family with a Dad who was meticulous about eating habits.  Part of it is that Mary Ann doesn’t have the view that I have from across the table.  She is focused on getting the food into her mouth.  I see what doesn’t get there. 

Mary Ann did not choose to have limited dexterity.  All she wants to do is eat.  She does what is necessary to get that task accomplished.  My struggle is not with her messiness, it is with my inability to just take it in stride and ignore it.  I am self-conscious for her, when she is not.  I am embarrassed for her, when she is not.  It is hard to admit this, since she is the one living with the Parkinson’s and its impact on her ability to simply enjoy a meal.  I feel very petty.  In this regard, she is healthier than I am.   At least I have the sense not to allow my feelings to stop us from going out.  

Anyway, when we go out to eat, I don’t have to cook and clean up.  With that payoff, bring on the messiness! 

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.

Tonight we met a couple who have just received the diagnosis, Parkinson’s.  It was their first time at the Parkinson’s Disease Support Group.  I will speak only in general terms since I did not ask for permission to discuss their situation here.  As I listened to what they have been going through in incorporating the diagnosis into their lives, I couldn’t help but remember twenty-two years ago, when Mary Ann and I were in our early to mid-forties and the diagnosis came.

The couple tonight had been spending much time and energy trying to look forward, trying to determine what to do to prepare for what is to come.  There is so much information available now. I don’t know what the status of the Internet was twenty-two years ago, but, since we didn’t have a computer, its status is irrelevant to what we experienced then.

Information was hard to come by.  What was pretty unnerving was that the first Neurologists we saw didn’t seem to have much information either.  It isn’t that the disease had not been identified long before 1987.  The Neurologists we went to at first were not specialists in Parkinson’s.  Their staffs knew only the basics.  Since every presentation of Parkinson’s is different in each person, the basics seemed more harmful than helpful since they didn’t always fit Mary Ann’s experience of the disease.

During those early years, we did make occasional trips to Kansas City from Oklahoma City either to attend a Parkinson’s Symposium, or visit the Kansas University Medical Center’s Parkinson’s Clinic.  There we discovered a Neurologist and Staff who actually knew about Parkinson’s.  What was so frustrating to us as we went to the Neurologists in OKC was the discovery that we had come to know  more about Parkinson’s than the Neurologists and their staffs there.

Even at that, the knowledge of Parkinson’s in 1987 pales in comparison to what is known about it now, especially the non-motor symptoms.  I have talked about this before in other posts on this blog.  The question that has come to mind tonight is, what would we have done differently, how would our experience these twenty-two years have been different had we known then what we know now?

We talked tonight about the challenges that lie ahead for this couple.  They have worked very hard at anticipating and preparing.  They have searched the Internet and found lots of information, information that was not available when Mary Ann was diagnosed.  They have one of the best Neurologist’s around, one who specializes in Parkinson’s Disease.  Their situation is much more challenging than ours since both of them are dealing with physical problems.  The current Caregiver (now diagnosed with Parkinson’s) is likely to be needing care as time goes by. The one who has been receiving care is likely to need to become not only more independent but able to help the current Caregiver.

With the diagnosis only months old, it is hard for them to imagine how they will deal with what is to come.  When Mary Ann was diagnosed, we had no idea what we were getting into.  We did not have but a tiny fraction of the information these folks have.  The question wandering around in my head is what would we have done differently had we known what they already know, had we known what we now know.

The answer that first pops into my mind is, nothing, we would have done nothing differently had we known then what we know now.  Even with all the knowledge we have gathered over twenty-two years of listening and reading and learning, we still don’t know what lies ahead!

As we have lived out each day for all these years, we have used common sense based on the information available.  We found our way to a good doctor.  We paid attention and tuned in to the treatments and medications and reasons for them.  We went to the symposia and continued to read and learn.  When we moved we got a home that was fairly handicapped friendly and then increased that accessibility as soon as we could afford to do so.  At each step along the way, we made choices that accepted the most likely progression of the disease, choices that seemed to make sense.

We could not and cannot know what lies ahead.  We can simply create an environment friendly to our situation and trust that we will make good decisions as the days and weeks unfold.  We can only do what we have the knowledge and resources necessary to do them.  That is more than enough to do.  Yes, it means thinking about financial issues so that things are in place to the degree possible.  It means developing contingency plans within reason.  We cannot cover every potentiality.  We simply can’t.  We have had to accept that.  No one can know what lies ahead, nor is it possible to have every base covered.

The good news is that by acting responsibly, doing the best we can with the information and resources available to us as each day goes by, we have the best chance of dealing with whatever contingency may come.  There are no guarantees in life.  I am hardly the first one to come to that conclusion.  It is a truism.  By giving up the illusion that we can anticipate and prepare for every problem the diagnosis will produce in the future, we are free to live the day we are in with some peace and enough energy to deal with whatever that day brings.

The couple tonight had come to that conclusion after working very hard at assessing what the future will bring and preparing for it now. They will clearly make the best of a very difficult situation.

What lies ahead?  We have some clues, but only clues.  We won’t know what actually lies ahead until it happens.  Doing the best today with what we know, dealing responsibly now with what is actually happening, doing what we can today to position ourselves for what seems likely to come is not only a productive way to live, but it gives us the best chance of being able to deal with whatever it is that does lie ahead.

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.