Time

It's been a bit, I apologize for that if you were looking for me.  If you weren't, well you never knew I wasn't here, right?

It's been a rough week. Lots of things to process, lots of emotions.  Mom continues to be unwell, and a change of PCP reveals information she had been concealing from us, information she finally decided she needed to share.  Seems she's supposed to have been on dialysis for some time now.

Monday's trip to the clinic led to a follow up appointment with her PCP's practice. She changed doctors at that time, something we supported her doing.  I only wish I had been there to hear what the new doctor said to her to make her finally reveal her situation.  She told me one version, my brother another but that's her MO and we compare notes as a result.  She told me he said, "Well it's dialysis or I cash in" (her phrase for dying).  When my brother called she told him without dialysis, she has 3 months to live.  

While it is not outside the realm of the possible that she has misinterpreted something with regard to that time-frame, I believe it unlikely.  Some quick research on kidney failure presented us with a list of all the symptoms we'd seen in her (and seen her treated for) over the past couple of years:  edema, shortness of breath, lethargy, loss of appetite, anemia. Other common complaints she's made: getting up to go to the bathroom several times a night, inability to sleep, nausea, vomiting....the list goes on.

After processing this information, and talking extensively with my brother, we at least have an outline of a game plan. How that moves forward depends very much on her. She's stubborn. Anyone that knows her, knows this.  She is incredibly protective of her independence (such as it is) and making her own decisions. We have asked her to move her nephrologist's appointment up sooner; she can't, she says.  We ask when she's going for the bloodwork she needs to see him; she can't until the bruises from Monday's IVs heal, she says.  She snarls at my brother, tells him she doesn't need him nagging at her; my brother tells her to get used to it.

As for me, I have printed out forms and done research. Medical powers of attorney, healthcare advance planning booklets; information on home dialysis and dialysis at medical centers. I've talked with a nurse acquaintance who reminded me that the VNA is an option if her physician so orders.

Tomorrow, while my husband distracts my father so that my father cannot distract from the conversation, we will talk to my mother about all of this.  We may, whether for good or ill, use her fear if we must.  Ask her if we can help her to expedite an appropriate treatment. Ask her how we're supposed to know what she wants if she refuses treatment and falls into a coma, or her organs begin to fail.  Ask her what she thinks we should do about my father, who cannot live on his own, and who is utterly lost in her absence or outside of his own home.  We need to make her think about the consequences of her inaction, past and future, and the consequences of her preconceived notions and fear of medicine. 

Our actions will be driven by her decisions - they have to be. We will try to drive her to making good decisions, ones that will improve her quality of life.  We will be her advocates, we will do the things she finds too daunting in her current state.  We will do what we can to give her reason to live.  But ultimately, we are restricted by her future decisions as she is by her own body right now.