Don’t Even Know Where to Begin…

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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10 thoughts on “Don’t Even Know Where to Begin…

  1. Avatar of DeniseDenise

    Hi TUKAS–I’m so sorry about this roller coaster! I can hear your agony. I hope it felt better to let it out. (Did you break any plates in the backyard??)

    I think the Hospice nurse is concerned because she sees your struggle with your mom and whether to go to the hospital. She can see you’re getting ready for battle, which also means you’re not ready to let go.

    It’s so important to give your mom medications as prescribed by Hospice. It’s so important to trust that they know how to manage your mom’s situation.

    Would it be helpful to speak with the Hospice social worker or clergy person? Perhaps the social worker or clergy could help you gain some clarity about the situation so you can let your mom go. I know how utterly sad and awful this is for you. Your mom is ready. Your dad is waiting. It’s okay. You’ve done everything you could for you mom. You can lay down the gauntlet and let yourself off the hook about doing the impossible. We’re not meant to live forever. It’s okay that we go. You’ll be okay. And, your mom will be pain-free.

    Hope this helps.

    Reply
  2. Avatar of The Unit Known as ShandiThe Unit Known as Shandi Post author

    Hi Denise,
    I’m not at all struggling with whether to go to the hospital. Mom clearly expressed a month or so ago that she didn’t want to go. So, I’m not even considering it. I am still battling, but only from home. I AM ready to let Mom go…but only if she goes while I am carrying out her wishes. Using antibiotics, at home, was what she asked me to do.
    The hospice nurses have been wonderful. But, every one of them has had a different take on things. One told me to cut way back on the meds, to see if Mom would be more responsive. All have told me to use my judgement. If Mom is in pain, or agitated, I do use the meds. As much as is necessary to keep her comfortable.
    The difference of opinions is with this nurse (who is her case manager). She wants me to use them whether or not I feel Mom is needing them. Probably a mute point right now, as Mom’s change in condition is requiring more than we’ve needed through this whole ordeal (and we are using them). In fact, I’ll have to talk to the Hospice nurse about increasing her dose, as it doesn’t seem to be keeping her comfortable.
    I’m just frustrated because it has been so hard to carry out Mom’s wishes.

    Reply
  3. Avatar of JenniferJennifer

    Oh, Shandi – What an ordeal! I’m so sorry to hear your situation has hit a new and different (yet all too familiar) kind of “warp speed” level.
    You absolutely know what your mom asked for and wanted – hold to that and you’ve fulfilled her wishes.
    Sending best wishes I can!

    Reply
  4. Avatar of The Unit Known as ShandiThe Unit Known as Shandi Post author

    I found an outlet. I just decorated my poor, patient husband with flowers from our yard. No pictures posted to protect the innocent man who is doing whatever! he can to help the situation. I tried to decorate my son…but he gave me “the look”.

    Reply
  5. Avatar of DeniseDenise

    Hi–Oh, I love that! Flowers on love–sounds like a beautiful picture.

    You have fulfilled your mom’s wishes–and much more. You have surpassed them. As she said, she’s very, very proud of you. :)

    Reply
  6. Trish

    Shandi, I am so sorry you’re back on this roller coaster. No one can say you haven’t fulfilled your mom’s wishes. You absolutely have and have gone above and beyond in staying true to your promise to her. Sending you peace, comfort and hugs (and love the flowers on hubby!!). :-)

    Reply
  7. Bette

    Hi Shandi,

    Lack of sleep and C-Dif go hand and hand, and in addition to these, your experiencing very unknown territory.

    Doctors and C-Dif are very confusing and frustrating. After 3 months, we finally found a doctor that told us you can test negative for this and still have it. When talking to those in the medical field (including rehabs – where I think my mother contracted it) you can sense an immediate wall go up. It’s unsettling that something so confusing and parts of it unknown is also so serious.

    My advice on the numbness would be to get more sleep…not rest, sleep.

    Thinking of you all. You and your mom are in my prayers.

    Reply
  8. Unit Known as Shandi

    Thank you, Bette. I’ve felt the same “wall” with this. Today, it’s all about me (and Mom). Here’s what I’ve done to fix how I was feeling yesterday:
    1) Asked for a new hospice nurse. Explained to the nursing supervisor what Mom’s wishes were, and that I was trying to honor them, and didn’t want to have a case manager that made me keep defending those choices, or that kept questioning whether I was ready to let go, or that pushed the pain killers and Ativan when they are not needed. The nursing supervisor confirmed that I am just trying to honor Mom’s wishes, and that my “middle ground” approach was reasonable and justified.
    2) Called my brothers. One of them wants me to keep Mom comfortable, whatever it takes (he’s only seen Mom at her worst during this, although he’s been here a lot). The other thinks the meds are causing the unresponsiveness. (He’s gotten in on the great moments over the weekend, and has a hard time understanding how we went from that to this so quickly.) We work very, very well as a family…but work best when we are together, seeing the same thing. My brothers will be talking to each other this evening, and trying to get more on the same page.
    3) Got a full night’s sleep last night (6 hours). My husband slept beside Mom. It helped.
    4) Asked family to just come sit with Mom this weekend, so that I could get some space and perspective (and sleep).
    5) A different nurse just came out (from the time I started this post). She won’t necessarily be our regular nurse, but she gave me more answers, support and understanding than I’ve gotten in the past two weeks from the other nurse. She suggested alternating the morphine and Tylenol suppositories and confirmed that our approach is not crazy, but is honoring Mom’s wishes. It helped tremendously!

    Reply
    • Bette

      Hi Shandi,
      6 hours is okay…8 might be better (:

      We had a real negative experience with Ativan and were told that an elderly person can actually become more agitated if on it for an extended period of time…just wanted to pass that on to you.

      Thinking of you.

      Reply
  9. Unit Known as Shandi

    I know. I mentioned that to the Hospice nurses, but I’ll have to address that again. Mom has had negative reactions to others that are preferable. In the past, we used it very rarely. Right now is a different matter…
    Thank you, Bette!

    Reply

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