She got out of the car and walked up the steps into Dick and Dee’s house.  It was a bit of a walk, but rather than stopping to get the transfer chair from the van, we just walked into the living area to sit down.  I brought the transfer chair into the house, but from then on, it was never used.

We talked for a while.  Dick is also a retired pastor, and Dee has been very involved in church activities.  Not only that, but they both, especially Dee, are avid birders.  They love the wildlife and the outdoors.  They have built a heavenly respite with a wall of windows with deck and bird feeders framing the view of a very large pond surrounded by trees.  Between family and church, birds and other wildlife, we had lots to talk about.  You should hear Dick’s raccoon stories.

We visited with our Nephew, Tom, who shares the love for birds, the flora and fauna.  Our Niece, Jill and her three boys came by.  It was a very pleasant and satisfying mini-family reunion.

Then came dinner.  Much to my dismay, the lavish meal of mostly homegrown, nourishing and tasty foods dramatized the paltry fare to which Mary Ann is subjected on a regular basis.  We both ate voraciously, realizing we would be back at our usual table soon.

Later we went next door to see Jill’s newly built home.  Mary Ann walked outside to get in a golf cart that delivered her to the garage of Jill’s home.  That is when the walking began in earnest.  The house is huge, well-designed, woodwork done by Amish artisans.  We walked from one end to the other, enjoying what would put to shame most of the Home Network’s best.

After touring the house Mary Ann walked back to the golf cart, rode to Dick and Dee’s place, walked into the house, and we talked some more.  Then she walked out to the van so that we could head back to the motel.

Those of you who followed the events of a number of weeks ago will appreciate the significance of that walking.  After going through a time when Mary Ann could walk only a few steps, sometimes not even that before fainting, this was a pretty dramatic display.  I conditioned myself to jump up and either help her walk, or ask her to sit back down so that I could move her from one place to another in the transfer chair — seeking to avoid a fall that could do damage to her.  As this roller coaster we are on moves up for a time, it seems that I need to re-condition myself to just let her walk.

The harsh reality is that tomorrow may bring another dip in the ride — but maybe not.  It is a challenge to re-train my auto pilot to respond differently when she gets up.  It is encouraging to see her walking so well.  My hope is that the more she walks the better she will do at it.  She has gone down but not very often.  For the most part, I still stay very close, often with my hand lightly on the gait belt or holding her more tightly.  If she seems to be walking well and she is on carpet, I back off.

A few weeks ago I was wondering if we were beginning the endgame.  That thought has retreated for now.  The fall weather is energizing, and Mary Ann seems have perked up also.  When we were walking into the house, having just returned from our week long trip, after 11 hours on the road in pouring rain, she said “that went pretty well.”  Last summer I thought our traveling days might be over.  At least for now, it seems not be so.  In two weeks we head for our very favorite Bed and Breakfast in Hot Springs, Arkansas, Lookout Point – Lakeside Inn. []  There is no knowing what will be so when the time comes to load up and head out for that trip.  For now, we will just enjoy the moment.

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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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