Don’t Even Know Where to Begin…

Jul 20 2011 in by The Unit Known as Shandi

Not even sure where to start this post, so I guess I’ll just dive in. On Monday, we went to see the Infectious Disease doctor in the big city. We’ve been waiting for this appointment for 3 months now. There wasn’t a doctor that specializes in this locally. We left home at 10:00 AM, and got home at 4:30. Long, long day for Mom, who hadn’t been out of the house since July 2nd (when the C Diff hit) and who had been spending a few hours, several times a day, out of bed this past week. The doctor was amazing. He spent a full hour with us, and answered every question I had that I’ve been unable to get answered anywhere else. Mom seemed to handle the day well. My sister’s house was on the way, so we stopped so she could have a hug and a kiss (more about my sister later). Bottom line of what he said medically was that Mom was stable, her lungs sounded good (Hospice nurse confirmed yesterday that they were much improved). He said she’d be on antibiotic therapy for the rest of her life, but was encouraging and optimistic. I took her meds with me, and told him the two antibiotics that she had been on for the C Diff and Camplyobactor. They were finished on Saturday. Her primary care had ordered a stool sample to see if the C Diff had cleared. The Infectious Disease doctor looked alarmed, and asked me again when the antibiotics were finished. I told him. He said that the C Diff would not leave her system for 2-3 months, and that it was imperative that she stay on the antibiotics, or the infection would come right back. A stool sample was not necessary, because he already knew it would still be positive for C Diff. I was frustrated, but Mom looked so good, I thought this was one of those “live and learn” moments.

Monday evening we got home. About 6:00, Mom started complaining of pain in her stomach. To make a long story short, by yesterday morning, she was right back to where we were a week and a half ago. She’s unresponsive again, not eating or drinking, in a lot of pain and needing both Ativan (for the anxiety) and pain killers. (She had been off both, and was feeling good, just tired).

I am angry and numb. Angry because her primary care should have known, or consulted with an expert in the field if she didn’t know. Numb because of being so tired from lack of sleep and on this emotional roller coaster. I haven’t had time to process any of this emotionally. I’m also struggling with our Hospice nurse, who told me that she wanted me to continue to give Mom the Ativan and the morphine round the clock during Mom’s good days (Mom didn’t need it during her good period. It’s not that I don’t give it when she needs it, I do, but if she is not in pain and is showing no sign of distress there is no sense in giving her medication that is going to make her less responsive). The nurse insinuated that this is why we’re in this crisis. It’s not. Mom has all the signs of the active C Diff again. The Infectious Disease doctor’s nurse confirmed this. The Hospice nurse is also making statements like, “It sounds like you still want to be fairly aggressive with this. Are you sure you’re ready for Hospice”? And yet, antibiotic therapy to keep the patient comfortable was part of what they told me Hospice’s goal was when we were admitted. If we don’t treat with antibiotics, the bacteria grows and we (including the hospice people) are more at risk for contracting it. Mom’s pain and misery goes through the roof. Their goal is supposed to be keeping her comfortable. It’s not that I’m not ready to let her go. She is just so miserable when she has this infection. I really wonder if part of this conflict is Hospice balking at the cost of her antibiotic. The one the doctor wants her on is extremely expensive, and I haven’t figured it all out yet, but it sounds like her regular insurance doesn’t cover her medications when she’s enrolled in Hospice. I don’t like thinking this way, but I can’t help it. It is feeling like the very familiar fight to get Mom the medical attention and medication she needs that I’ve had all year.

I am trying hard to carry out my Mom’s wishes. No hospitals. Fight the infections with antibiotics at home. It doesn’t sound too hard to me. Very clear, very simple. Yet I find myself in a battle again. I guess I need to let it go. I have the antibiotics, and we started them last night. I can’t imagine Mom surviving Round 2 of this in her weakened state, but I didn’t (and neither did Hospice) think she’d survive Round 1. I need to slow down, breathe, and just take it as it comes. My best friend told me to go buy plates at the thrift store, take them in to the back yard, and throw rocks at them to break them to release the anger I’m feeling towards the primary care doctor and the Hospice nurse. Not bad advice. Not sure what to do about the numbness. Any suggestions?

Meanwhile, my sister (half of the Unit Known as Shandi, see my bio) found out on Friday that her hip is destroyed from RA. She is meeting with the orthopedic surgeon today, and I’m suspecting that she’ll need a total hip replacement. For many other reasons that I won’t go in to here, I’m very concerned about her. On top of all the medical problems she’s having, she’s dealing emotionally with Mom’s situation.  I think I’ve blogged about so many people telling me I need to go into medicine as a career, and me saying that it would take more than money to make me take this on. There is a small handful of people that I’d do this for, and my sister is one of them. I can’t help her right now, and she needs it. My brother asked me last night what he could do to help me, and I asked him to take care of our sister. Or at least help her get a plan in place to get the care she needs to get through this.

Sorry about this ranting post. I just needed to share with those that will understand. I hope that everyone’s day goes well today. I’ll keep you posted, and thank you for all the support.

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