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I believe I have done a terrible thing. In looking back at text messages to my brother, I noticed texting him in early April about seeing our GP and he suggested nursing home or hospice to me. My Mom did have a type of dementia, but could talk in sentences and knew who we were in just 1 month ago, folded clothes and ate better. Hospice came in soon after this and said to discontinue the exelon patch as doing her no good anymore. My sister was very hesitant to stop this, more afraid of behaviors I believe, but I have always believed as to hospice with patients I cared for and am POA of healthcare so did as they said. This dementia has escalated horribly in only 1 month. I realize this would come, but not in 1 month so much as speech makes no sense and knows none of us, is incontinent of urine at night now. I so wish I had not done this, I have read in even advanced dementia that the exelon patch helps. I'm sure going back and starting with start up dose and increasing as ordered would do no good at this point. Please beware if any of you are told to also do this, do not, I feel horrible guilt. I know there is nothing you can help me with just my observation. Hospice nurse to be here tomarrow and will discuss with her, I know they also have social workers, maybe that could help me. My Mom is also a nurse and such an advocate for all of us keeping my Dad going for years to different docs as knew his case was not as they saw it and had him sent to specialists which did help him with much heart disease. I am rambling late at night, but had to get this off my chest to someone. Thanks to all out there.

I had reservations about doctors medicating my mom with donepizil but it does work for her. What bothers me more is — What has hospice become? Just how do doctors decide when life is no longer worth living? What happens after hospice shows up?

In the 1980s, Britain began the first hospice program. I’ve heard that was a time when Britain’s socialist medical system was cutting corners to save money. It’s true hospice would save money and basically cut down on length of suffering but why not leave the dementia medication in place. The IDEA of hospice was to provide opportunities for family to spend they’re last meaningful time together. How can that happen when the patient has gone bonkers in one week’s time?

I was hospice (an oncology RN) before it had an official name in the US, and what I’m hearing IS pretty well not the intention of hospice. Do they send all ‘dying’ patients home? The family is not equipped for that!
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This information on the Exelon Patch site is interesting:

For Physicians
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Although the precise mechanism of action of rivastigmine is unknown, it is thought to exert its therapeutic effect by enhancing cholinergic function. This is accomplished by increasing the concentration of acetylcholine through reversible inhibition of its hydrolysis by cholinesterase. The effect of rivastigmine may lessen as the disease process advances and fewer cholinergic neurons remain functionally intact. There is no evidence that rivastigmine alters the course of the underlying dementing process.

For Patients

Some patients will not benefit from treatment with Exelon Patch. Exelon Patch does not cure Alzheimer’s disease. All patients with Alzheimer’s disease get worse over time.
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Isn't it interesting that no one knows exactly how the drug works?

There is no evidence that any current dementia drug alters the course of the underlying dementing process. The dementia continues at its inexorable pace. Because certain symptoms are reduced (no one knows how) the dementia may not seem to be advancing, but behind the scenes it is. As there are fewer intact cholinergic neurons in the brain as the disease progresses, the drug has less and less to work with and loses its effectiveness. Then the progression that has been going on all long shows up.

Maybe the patch was still effective for your mother, helpingmom1, but it would eventually have stopped being effective.
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First, you were following professional advice that you had no reason to question. You have nothing to feel guilty about. Regret? Maybe. Guilt? No, you have not earned that.

Next, people on hospice are expected to get worse. Why did the doctor recommend hospice? What were the symptoms or conditions? Hospice is only recommended for persons who are thought to be near the end of their life journey. Did the doctor think the dementia put her there, or was it some other condition?

Also, people with dementia get worse. Always. And they get worse on their own schedules. For some it is gradual, for others it is abrupt. It can be a steep slope or a mild slope or not a slope at all but steps from one level to the next. What kind of dementia does your mother have, do you know?
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