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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