A Terrible Drug

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?

Sundowning

My mother's condition is free-falling. The attending physician is lapsadaisical in his approach. An appointment was scheduled for this past Thursday and on Tuesday, the secretary called to tell me that the appointment was cancelled "because it's too soon after the new medication has been prescribed". The following 2 days, my mother refused to eat and wanted to sleep all the time. It seems to me like she is depressed.
I revolted and I have been desperately trying to get my mother an appointment with a geriatric psychiatrist at a university hospital geriatrics department in another city, while hunting for a new GP. I want (and need) a second opinion. The local university hospital geriatrics department that did the evaluation last year never followed up with the appointment with the geriatrist even though he was to see her 4-6 weeks after she was released. I had followed up with the case worker, and nothing had developped. The attending physician has proven that he has no knowledge of appropriate medications.
The attending physician, according to his secretary, was going to give me a call. By Thursday, I had not heard from him and I called my own physician who works out of the same clinic (she is the one who intervened and increased the Exelon which should have been increased 2 weeks after the treatment started, if there were no adverse effects) to ask that she take charge of my mother while I hunted for a new GP. Her caseload is overflowing and she cannot fit my mother in, but she offered to speak directly to my mother's doctor. I accepted and he called this morning. He asked pointblank if I thought he was not doing his job and I replied emphatically "yes". The outcome of this not so veiled accusation of malpractice is that he will arrange for my mother to see a geriatrist next week. He was made fully aware that any course of action prescribed would be overseen by another university hospital.
This morning, I had already called the geriatrist who was supposed to follow-up last year. He was away on vacation but the department nurse took the call. She was not surprised that my mother had not been seen because, apparently, there was a huge backlog in the good doctor's clinics. She did indicate that other geriatrists were more up to date, but that it would be very difficult to transfer my mother's file to another doctor. She did check computer records and was quite surprised when she found out that my mother's file had been closed. She will be having the file sent to her to see what happened.
I am learning skills I never wanted to learn. This is more than assertiveness training and it is draining and time consuming. Caregivers already put a great deal of their energy trying to ensure that the patient is comfortable, without having to expend energy fighting tooth and nail to get decent medical care. And caregivers do not need the runaround given to them by doctors who are condescending, misinformed and unwilling to act.
I found out about the Ebixa from a caregiver who went through the mill when his wife suffered from early onset Alzheimer. Without the benefit of his experience, I would not have known half of what I need to know to cope with the situation. This blog is new (as I am new to the caregiving role), and there are not very many comments to the posts I write indicating that what I write is read, but I do know this. If caregivers are to have the information they need to fulfill their role, "real" information has to be given to them, not just lipservice and unpractical and vague advice. So I will continue posting, as things develop.
While having to deal with these new (unexplained symptoms), I came across information on the Sundowning Syndrome. Part of what my mother is experiencing is just that. Her behavior changes when the sun sets. She then goes into a "no" mode. Mostly "no" to food, or to brushing her teeth. Why is it that this occurs at this time? Is it because of some primeval fear of the darkness to come? And what does it say about what the Alzheimer patient is feeling?
What is Alzheimer if not a slow and steady dimming of the lights? Bit by bit, each light in the house is closed until all that is left is darkness.
This evening, yet again, dinner was refused. We were out at a restaurant for dinner and usually, having dinner in a public setting is more successful than having dinner alone at home, as though she still has a tight grip on her appearance in public. This was new and it was emphatic. Nothing was eaten. As we were heading home, I stopped at the store to get some milk. It is right next to the lake and the sun was setting. It was one of the most beautiful sunsets I have ever seen. We watched it and I took some pictures, hoping that my camera would do it justice, because I knew exactly what I would do with the pictures.
When we got home, I heated some hyperproteinated chocolate Ensure (it tastes like hot chocolate) and she drank it all while we talked. I had found some beautiful grapes (her favorite fruit) and put some on the plate. She looked at the grapes and said "I'm scared". I asked "Of the grapes?" She said "Yes". I asked "Why are you afraid of the grapes? Because it is dark?" She said "Yes, they look different". So I put my plan into motion and said "You know, Mother, how beautiful the sunset was earlier?" She said "Oh yes". I continued "You know what this anxiety you feel at this time of day is called? It's called sundowning. Isn't that a beautifully descriptive word?" She looked at me, not quite sure what I was getting at and said, tentatively "yes". So I went on "You know that everyone thinks that Alzheimer is a terrible disease because people lose their memory bit by bit, but if you think about it another way, it's like a sun setting. The person who has Alzheimer is turning off the lights in the house, one by one, and tiptoeing gently out of life. In life, you have to take what is offered and see the beauty in it, like the sunset we saw tonight. And you know that I will be there until the last minute while you are turning off the lights and tiptoeing out."
She breathed a sigh of relief. The Ensure was followed by half a brownie and a few grapes.
So what have I learned from all this? Firstly, and most importantly, to listen to my gut feeling, and not to be afraid of confronting so-called experts when they do not act professionally and in the best interests of the patient. Secondly, that the people who are best positioned to give advice are the ones who have walked the talk, not the so-called experts who have stood on the sidelines, watching. Thirdly, that when you are looking for a good doctor, you need to find someone who is well-informed, passionate about his work and compassionate towards the patient and the caregiver. If he does not cooperate with the caregiver, he is indirectly doing harm to the patient and that is called malpractice. Finally, as a caregiver, you have to listen with empathy to what the patient is saying and react with compassion.
The sun has set quite a while ago, and I am now certain that I will be able to sleep peacefully. I'm bushed!
Oh, and the geriatric psychiatrist from the other university hospital left a message on my answering machine. I am to call him on Monday.