The weather was predicted to be spectacular today.  I wanted fresh cider and cider doughnuts from the Louisburg Cider Mill.  The drive is a wonderful one, lots of country scenery.  I warned Mary Ann early today of my plan.  She said okay.  Understand the Cider Mill is an hour and a half from our house.  I had in my mind that it was only an hour.

The plan was realized and we spent three hours on the road for a couple of cider doughnuts and a cup of cider.  We did bring back a dozen apples, a jug of fresh cider and some licorice, one of Mary Ann’s favorites.

Along the way, we got to spend a little time at a family farm tended by Doug and Marikay.  What a beautiful spot, fields, woods, a pond, and a newly built little cottage.

Saturday we had gotten to spend some time with our Son Micah, Daughter-in-Law Rebecca and Granddaughter Chloe, who live about an hour away in the Kansas City area.  We went to church with them and the ate with Micah and Chloe while Becky enjoyed time with a friend.

That quality time was followed by my Sunday morning trip to the Lake for a long walk on a newly discovered pathway, providing sights and sounds, entertaining descriptions posted on periodic stands, along with great weather.  Mary Ann enjoyed time with a Volunteer/Friend, who washed her hair and treated her nails, providing some refreshing personal care.

After a little football, we were treated to some creative and engaging arrangements of choral music and piano music by a talented composter/arranger named John Leavitt.  I had had the joy of getting to know him through an informal interview when the congregation I served was looking for a full time musician.  It was a pleasure to attend the concert/hymn sing at a local parish.  John has a remarkable ability to take something that could sound trite and tiresome from so much use and make it new and fresh.

The scary moment came just before we were to head out the door and leave for the cider mill.  We were returning from the pre-trip bathroom visit.  She had shifted into one of her eyes-closed modes as I walked her into the living room.  She was not moving well, so I asked her to stand still for a moment while I went the six feet or so to get the transfer chair and pull it beside her.

I saw it happening, but I couldn’t reach her to stop it.  The scene moved almost in slow motion as she move out of balance toward the end table, shifted direction, guided by the front of the couch and her head slammed against the back of an old wooden mission rocker as she cumpled to the floor.

For a moment, I thought this was the dreaded fall that would take her to the hospital, maybe producing a more damaging stroke than the last one.  I was sure, at the very least there would be bleeding that could not be stopped due to the regimen of Plavix and Aspirin.

I held her head and felt the knot.  There was no bleeding.  As I held her, I asked if it hurt terribly.  I was most interested in hearing if she could respond coherently.  To give her the words with which to respond, I asked the usual, “on a scale of one to ten” question.  At that point she said it was a nine.

I was just glad to hear her respond.  I held her for a while, then asked if she wanted a pillow so that she could rest on the floor before getting up.  She said she did.  While the norm would be to try to have a person stay awake after a head trauma, she was talking very coherently.  She had already, before she fell, switched into tired mode — usually followed by a nap.  I had asked her then if she wanted to nap, but she still wanted to go.  Now, as she lay on the floor, I thought she would need to rest for a while.  Already before she started her nap, she said that her head did not hurt any more.

The usual pattern is for her to sleep two hours when need for a nap hits.  This time she rested for less than an hour.  When I got her up from the floor, she decided that she still wanted to go.  That is when we left for the cider mill.

I have said it before.  I will say it again.  This woman is made of iron!  Twenty-two years of Parkinson’s, multiple heart attacks with two of the three main arteries on her heart completely blocked, a life-threatening bout of pneumonia, a stroke, the onset of Parkinson’s Disease Dementia (a Dementia with Lewy Bodies), flirting with stage 4 (of 5) Chronic Kidney disease, leaking heart valves, Pulmonary Hypertension, too many falls to count, and off we go on a three hour trip to the Cider Mill for a cup of cider and some cider doughnuts.

She will probably outlast me and end up dancing on my grave.  Yes, she still dances.

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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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