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View Diary: Elder Advocacy and Being a Detective (74 comments)

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  •  I have been through this too... (7+ / 0-)

    Are you your mom's health care proxy? if so, you should make it known that NO drug is to be administered unless you have signed off on it. And I mean literally signing a document. Of course in an emergency they might have to do something but make your wishes known, firmly.
    When my mom got to a nursing/rehab place last fall she had two bouts of bradycardia (low heart beat rate). both times it was brought on by meds. At the nursing/rehab place they had her on both Seroquel and Risperdol - a toxic and potentially lethal mix, especially for those with dementia. The doctor kept telling me she was dehydrated and that's why her heart was so slow. But as I was told by others dehydration would make your heart beat increase, not decrease. The doc seemed pretty nervous which I attributed to his concern. Now I realize he knew he almost killed her. At that same time the on-duty nurse asked me to sign off on one of the drugs, which I did (and regret now). But after a stint in the ER, she went back to the rehab and I made it known that she was NOT to be drugged against her, or my, will.
    If your mom is not psychotic there is no reason for such heavy meds, especially given her dementia. if they need to calm her, they could always use something like Lorazepam, an anxiety med.
    If your mom is not on a blood thinner, get her to drink cranberry juice. My mom had frequent UTIs but has had none lately - she is on aspirin therapy and gets cranberry juice every day.
    It's unfortunate that you have to be so on guard, that you (or anyone) cannot trust the medical staff. But they are underpaid and overworked and many nursing homes drug patients so they won't be a bother. Nice huh?
    Good on you for being your mom's watchdog. I hope you can get her back to a more even keel. I've been there and it ain't easy.

    A conservative is a man with two perfectly good legs who, however, has never learned how to walk forward. Franklin D. Roosevelt

    by MA Liberal on Fri Dec 09, 2011 at 12:07:37 PM PST

    •  My mom IS psycotic. And there may/may not (1+ / 0-)
      Recommended by:
      Villanova Rhodes

      be a need for the half dose the doctor today recommended. She was on Zyprexa before, but the two doctors seeing her in the hospital, in concert, decided that change was appropriate.

      She does do better on a low dose, I think, but they have her on such a high dose for her, apparently.  That is stopping today.

      They also changed directions on her blood pressure meds. Not only did they change the meds, they sent over to the care home a letter indicating that her BP should be taken three times a day and IF the upper number is below 110, to NOT give her ANY blood pressure meds.  How I am going to track that is the subject of a long note to myself sitting here on my desk.  Scares me.

      Mom takes Theracran and has for three years.  She doesn't like cranberry juice so this is the supplement instead.

      Actually, this is everything she takes:
      --500mgm b12/day (she has a tendency toward anemia, as do I and has all her life).
      --1 enteric coated 325mg aspirin/day
      --SlowMag
      --Calcium + D + K supplement
      --Lipitor
      --Theracran
      --Losartan 50 mg/day (depending on BP)
      --Haldon 1 (we'll see how this works, if it doesn't, I will stop it and yes, I have POA for her health and finances according to her trust).
      --Keflex (another couple days on this... she had a UTI, but the first batch of meds didn't kill it. Second urinalysis caught the infection still there).

      I am going to have to review all her meds there daily with the nurse when I go.  I can see that.

      202-224-3121 to Congress in D.C. USE it! You can tell how big a person is by what it takes to discourage them.

      by cany on Fri Dec 09, 2011 at 05:39:17 PM PST

      [ Parent ]

      •  Recent blood work? (3+ / 0-)
        Recommended by:
        cany, worldlotus, AllisonInSeattle

        If cutting the Haldol does not perk her up promptly, please get her blood drawn for a CBC or at least hemoglobin/hematocrit if she hasn't just had this done. Do not wait for a regularly scheduled appointment.

        Most of the symptoms you describe are connected as much with severe anemia as with the possible Haldol issue. This can get worse fast, while everyone is looking somewhere else for the cause. B-12 is not enough if she's dropped too low -- she may need a transfusion or something like Procrit. (I vaguely recall that antibiotics may exacerbate anemia, but I may be wrong.)

        Otherwise, your list actually looks like pretty good news. My uneducated sense is that most of her medications are not particularly time sensitive or critical, so the looseness of schedules in these places shouldn't be too much of a problem. The "hold if under 110" order is not uncommon and one they can probably are used to carrying out. If you call to check up on it, ask what the BP, or at least the systolic number, was. If you just ask whether it was done, or whether she got her medications, they will give whatever answer they think you want to hear. Don't be afraid to put up a reminder sign in an appropriate place in her room. I got away with a dry erase board that they had to check off for certain things, but that was after relationships were established.

        •  Yes. It was done in the hospital. She has had (1+ / 0-)
          Recommended by:
          Villanova Rhodes

          more bloodwork done in the last year (+catscans, etc.) than I have had in my whole life, I think!).

          She went in (about 9 months ago) for bloodwork which is when they found the anemia. She then went in every week for six weeks, I think (gee, I should remember given I have gone to every doctor appointment and every op appointment for the last six or so years!), for b12 shots. THEN they put her on the supp.

          I will, however, double check with the doc about this just to be sure.

          What I DO know is that after she entered the hospital the last time, they gave her two drugs--one was haldon the other I cannot remember, but was a sedative--and it slowed her lungs down so much they weren't sure she would recover.  She entered the hospital at 2am on a Sunday and the first call I got on Monday was from the doctor asking if she had a DNR (she does, it is spelled out in her trust)... which I had to read to him over the phone.  He was really worried.  It sounded to me like they almost killed her, something they deny. Her doc had nothing to do with that, it was the ER people because she was biting, fighting and generally being about as aggressive and uncooperative as possible.

          202-224-3121 to Congress in D.C. USE it! You can tell how big a person is by what it takes to discourage them.

          by cany on Sat Dec 10, 2011 at 08:31:41 AM PST

          [ Parent ]

          •  BTW... last bloods, just to be clear, were 4 weeks (1+ / 0-)
            Recommended by:
            Villanova Rhodes

            ago.

            202-224-3121 to Congress in D.C. USE it! You can tell how big a person is by what it takes to discourage them.

            by cany on Sat Dec 10, 2011 at 08:33:01 AM PST

            [ Parent ]

          •  OK. I'm about to write the kind of post I often (1+ / 0-)
            Recommended by:
            cany

            hate, because situations that are sort of similar to something one has experienced must be just like that, even though one doesn't have the credentials to make that generalization. So, apologies in advance, and feel free to ignore entirely. It still looks like the most likely problem is the haldol.

            But because of the weird coincidence of stumbling upon your story, I'll tell you what got me started on the rollercoaster you're now on.

            My mother, who was ambulatory on a walker but relatively healthy other than gastro issues, was also always on the brink of anemia (probably hereditary plus chronic kidney problems). After developing a diverticular abscess, she ended up having surgery. All went well, ICU was great, she began eating, drinking, conversing, etc. normally, and was moved to another room for a couple of days. Over a span of maybe two days, she begins to fatigue, stops talking much, stops eating, sleeps more. Surgeon decides to discharge her (hey, the incision was healing nicely!), idiot primary doc responds to our concern about her condition change by saying she's depressed and prescribing Prozac (seriously, Prozac!!!) and ok'ing the discharge to a rehab nursing home. Unfortunately, she was discharged before the morning labs came back, and discharge immediately kicks her medical records back into the ether. No one ever sees that her hemoglobin trajectory was down, rapidly.

            Looong story shorter, within 15 hours (and it should have been 30 minutes but the nursing home refused to order stat labs) we were back at the hospital, now in the ER. I don't remember the hemoglobin level at this point, but it was the same "Oh my God, what have we done" response from the ER doc. His first question to me was "is she a full code?" (She also had odd factors in her blood that made her hard to match, so he had to really scramble to find blood in time. Wonderful doc.)

            There was never a clear determination of what caused it -- the bodily insult of surgery, the infection that preceded it, or the heavy duty antibiotics tried before surgery -- but she had basically stopped producing red cells entirely. It was a long way back from that cliff, and by the time she recovered from it she was so deconditioned that she never became more than minimally ambulatory again. Hence my oversensitivity to anemia possibilities!

            Given that your mom's doctor actually knows her history, I doubt you really need to do anything more than ask "could the UTI or the Keflex be suppressing her red cell production?" or something equally nonthreatening. (I stress that I don't have the medical knowledge to say that this is a likely connection.) He(?) can say no, or "no, we'd be seeing/not seeing X in her behavior" or whatever. You will have planted the seed, and that's probably the best you can do for now. The doc will know that the test is cheap and easy.

            I hope by the time you read this you're back from a great holiday party where things were looking up and your mom is settling in. One thing these places do well is decorate for the holidays! Take care (of yourself, too).

            •  I will do that, and thank you for everything. (1+ / 0-)
              Recommended by:
              Villanova Rhodes

              The sharing of experience and stories helps me so very much. I still feel very alone, but not nearly as alone!

              The party today was great, though I'm not sure mom really understood what was going on. She is more lucid today on less Haldol and began the scary questioning of where am I, when am I going home, how long have I been here... and of course I am mostly lying... the truth she couldn't take.

              Her blood pressure today was 113/57... best it has been in over a week.  Finger infection looks great (is healing), legs look awful (had a discussion with them today about changing her soaking socks more and keeping her legs up an getting her to walk more which raises blood pressure and should help with the edema). They told me she has a Dr. appointment tomorrow which was a complete surprise to me! I have to take her, and maybe I just forgot... or maybe this is all new, but now my schedule, once again, changes... and have to find someone to help out at the vet in my stead.

              Going back tomorrow... probably every day from now on for at least the next couple of months to check on everything.

              Met some nice people today there and sang a lot. Good meal.

              Broke my heart that a couple of seniors were crying.  They are probably wondering where their families were. Sigh.

              202-224-3121 to Congress in D.C. USE it! You can tell how big a person is by what it takes to discourage them.

              by cany on Sat Dec 10, 2011 at 04:01:33 PM PST

              [ Parent ]

              •  Hey, that sounds positive! (1+ / 0-)
                Recommended by:
                cany

                I'm so glad it might be evening out a little, and that you connected with the ombudsman. Don't commit to going every day -- if you do, fine, but don't set an expectation for yourself that is going to interfere with your own mental and physical health. If you haven't internalized this yet, start now: "All I can do is all I can do, and all I can do is enough."

                Good luck at the doctor's appt. It's great that you have an existing relationship, and really helpful that she can still go out for appts. Despite how much fun that isn't for you, it means the doc can still get paid. Things get exponentially more difficult when the doctor is only dealing by phone or fax with the facility or with you. No reimbursement for that. (Different if she's in an HMO, I guess, but I'm thinking of original fee for service Medicare.)

                If you reach that point, I found it useful to be pretty candid with the doctors that I understood the situation, and ask their advice about how to make her continuity of care as easy as possible for them. I promised I would not impose on their time unnecessarily, that I would not cry wolf, and that I was fine dealing with nurse practitioners or physician assistants or whatever. Some like faxes, some have particular times they're available, one even gave us his personal email address. Candidly, it helped to have a physician in the family for when we really had to break through the wall, but simple respect for their time goes a long way.

                Now, put your feet up, have a glass of wine or something, and listen to music. You've done your duty for the day.

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