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.