The past weeks have been harrowing and it culminated on Sunday evening, this past week. I had noticed that my mother was free-falling. If I looked at the seven stages of Alzheimer, in one year, she had gotten to stage 6. She would not get up any more, wanted to sleep all day, went through bouts where all she could say was "no" and couldn't say why. Couldn't dress herself anymore, would put her nightgown over her street clothes. Stared blankly in the distance, would eat nothing whatsoever. On Saturday night, it took me 3 hours of pleading, cajoling, ranting, begging, any strategy I could devise, to make her drink one bottle of Ensure. I was at wits' end.
Sunday was not much better. Breakfast took 2 hours, then she headed for her bed and slept all day. I had the impression she was so deeply depressed that she was starving herself to death. On Sunday evening, she would eat nothing, so I brought the bottle of Ensure out again. One sip, ten minutes of convincing, another sip, and on and on. At one point, I looked at her and she was staring at me with a strange look I'd never seen before. She was actually glaring at me. If I asked her what was wrong, she came out of it and would say "Nothing", but the look kept coming back. I took her blood sugar level, it was fine. I took her blood pressure, it was fine too. I'd just finished doing this when she went into a seizure, then fell on her side. Luckily, she was sitting in an armchair, so she didn't hurt herself. I straightened her up, and she came to. The seizure did not last more than 10 seconds. I grabbed the phone on the table next to the armchair and called Emergency.
They took her to the local university hospital emergency. A neurologist and his residents examined her. I had brought her pills along with me (I had given the top portion of an old dyspill to the ambulance attendant). One of the residents came up to me and asked me if my mother had been prescribed Haldol. I said "no, she takes Zyprexa". He went away and came back again and said "The drugstore says she takes Haldol". I looked at him perplexed, then light dawned on me. We had changed drugstore and the attending physician had phoned in the prescriptions. Maybe there had been a switch then?
They took her off the Haldol. Here's a link to an article on Haldol and Alzheimer patients... (click here). Out of 9 negative reactions, my mother suffered from 7. According to the authors, Haldol is a sinister choice of medication for people suffering from Alzheimer because "as symptoms develop, doctors may mistake them for worsening of the underlying disease. The physician might increase the dose of the antipsychotic medicine and temporarily suppress the symptoms, but tardive dyskinesia returns."
I was furious. Not only had the attending physician not followed up so that my mother could see a gerontologist, he had messed up a few times with the medication. He had not been able to control her blood pressure and that had resulted in a week's stay at the hospital where another physician found a drug that controlled it. She had been admitted with blood pressure at 200. Then he had not followed up on how my mother was doing on the Aricept and a pharmacist had to inform him that the adverse effects my mother was suffering were due to the medication. Then again, he did not know about Memantine (Ebixa) and it took more than a month for him to react and add it to the Exelon that had replaced the Aricept. He never increased the Exelon from the starting dose and on top of this, he was adding an antipsychotic drug with terrible side effects to her list of medication! He was negligent when he cancelled the appointment on the Thursday preceding the seizure because (according to the secretary) it was too soon after the new medication (the Ebixa) had been added! (it was 6 weeks later).
A brain scan was done and it revealed that practically no change had occurred since the last brain scan (a year ago). All the changes I'd observed were due to the medication? An EEG was done... no traces of epilepsy.
The neurologist wanted to transfer my mother to the university geriatrics evaluation department. I refused, saying she had just undergone a 5 week evaluation a year ago and that the gerontologist had never followed up 2 months later as he should have and worse yet, my mother's file had been closed for some undisclosed reason.
The geriatric psychiatrist from the other university hospital had called me on the preceding Friday. He had recommended a geriatric psychiatrist in our region. I insisted that a consultation be obtained so that any medication to treat anxiety be prescribed by a knowledgeable specialist. The appointment was gotten for the end of the month.
My mother was finally released on Tuesday. She has been eating relatively well, has been sleeping well and is much more active during the day. She is a joy to be around, has a positive outlook and is not anxious when she forgets things or is mixed up. She told the nurse that visits every week "I am here", meaning that she was present.
The resident who signed the release forms for my mother asked me if I was still contemplating getting a second opinion from another source (I had said to the neurologist that any recommendation made by that university geriatrics department would be gone over by another university hospital). I said "yes, I have lost my confidence in the people who have treated my mother and I want a second opinion." He answered "You are entitled to a second opinion, and I approve your decision".
My mother will be seeing a geriatrist next week at this university hospital. Once the recommendations of the psychiatrist and geriatrist are in, they will be reviewed by the other university hospital.
A friend of mine, a lawyer, has recently had his first experience with elderly clients. The man had suffered a CVA and his wife was less autonomous than she had once been. None of the children wanted to involve themselves, except to force them to sell their home and put them in a hospice. The man was not able to drive anymore, and his wife could not. In all other areas, they were doing just fine. In building his case, he evaluated the medication given to this elderly couple, and more specifically to the man. It would seem that most of the medication was given to regulate the patient so that he would be fully adapted to a hospice environment. My friend was outraged. If simple accommodation measures were put in place to provide for grocery and medication delivery to their home, they could manage well, yet the system was pushing them into an institutionalized environment. I can't help thinking that either willfully, or through sheer negligence, my mother's attending physician was worsening her symptoms so that she seemed more ill than she really was.
I wonder if any of my readers have any thoughts on this? And what has been their experience?
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