Back in mid-June, during my mother's first hospitalization, she was not very cohert/aware.  She was not eating and it seemed to me like her dementia was really going full force.  At that time, a social worker from the palliative care unit of the hospital called me and we spoke about my mom's care.  It had been determined that I (not my father) would be the one who would be making decisions if my mother could not.

To that end, I filled out a POLST (Practitioner Orders for Life Sustaining Treatment) form.  I did so with guidance from the medical professionals in the palliative care unit and based on what I thought my mother would want.  To that end my goals of care were "to improve health status while prioritizing physical and emotional comfort."  Basically what I wanted was my mother to get healthier but more importantly to be as comfortable as possible.  (How comfortable you can be in a hospital setting, I don't know...)

I thought I knew my mother. I thought I knew what you wanted. I didn't want any invasive procedures that would just make her miserable. However it never came to that. She was well enough to go to a rehab facility. She stayed there for approximately 6 days. Miserable each and every day. But by the  the 7th Day she was having some problems breathing and we decided that she would return to the hospital. Not what you want to do after 17 days in the hospital in less than a week out

It became a parent during the second hospitalization that she was very sick. She had pneumonia and then I was also told that she had sepsis. They treated her with intravenous antibiotics and she was on oxygen. However despite all expectations she was quite lucid. At least she was during the middle of the day.

The issue was when she wakes up in the morning she needs a good hour or two to come completely awake. During the first hour or so she is not very lucid and she is often confused and she's difficult to understand her. As a result I got several calls of medical professionals saying that they did not feel that she was able to make medical decisions for herself and they recommended hospice care in the hospital.  (From what I understand this happens in cases where the patient is unlikely to live for longer than a week or so.)  As a result I drove down late Thursday morning (June 30th) expecting the absolute worst.

When I got there, she was not great, but she was certainly aware of what was going on.  When the medical team of three (two physicians and the hospice nurse) came in to speak to her, she was able to converse with them quite well.  (This is not to say that there weren't words or phrases that she couldn't remember, but she was as clear as a person who had been in and out of the hospital for nearly a month could be.)  The explained (perhaps overexplained) that she was quite ill and they wanted to know what kind of care she might want.  My mother was quite clear; she does not want to die. A possible procedure was brought up that would require an IV in the neck and a transfer to the ICU to monitor; a procedure that I felt might be too risky.  However, my mother felt otherwise.  It was her decision and I stood behind her on it.  (As an aside as I write this the procedure was not done as the issue apparently stablized itself.)

I told my mother that I was here to support her.  As long as she is able I will stand by her decisions and if she is not able, I will do my best to make decisions as I think she would want them to be made.  

Saturday, she made another decision that I would not have made.  She has had no appetite for a LONG time (this may have actually started back in the fall) and she has no real sense of taste, and possibly smell (again this pre-dates Covid).  She doesn't enjoy food and could not stand the food in the hospital  or rehab.  Her caloric intake has been cause for concern; she is malnurished.  To that end, I had discussed the possiblity of a feeding tube (temporarily) earlier this month and ultimately decided against it.  However, Saturday, one of the physicians brought it up to her and she made the decision to have a Nasogastric feeding tube.  I wish I had been part of the conversation.  I might not have discouraged her, but I would like to have been an active participant and undertand why this was brought up now (a holiday weekend) and get a better idea of the benefits and risks.

I DO know the rational behind my mother's decisions and what her goals are.  She wants to see her grandson graduate from high school (and beyond).  I do not know how realistic this is, but I need to support her.  I cannot challenge her decisions, but try to help her make ones that will keep her comfortable and get her healthier.  I can (and will) work toward being a part of the conversations that she has with medical professionals when those decisionsa are being made.  To that end, I have tried to instill in her the phrase, "call my daughter" whenever she feels unsure or uncomfortable with something.

I feel that we are at a point where there are not necessarily right or wrong decisions; because we just don't know.  The best we can do is to make informed decisions, keeping in mind her goals and the realistic expectations that come with her illness.  I will continue to support her, no matter where that path leads.


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