Dear Carol: My mother, who has advanced dementia, went into a nursing home six months ago. She’s received excellent care but is now declining quickly so that she no longer swallows any type of food. Her doctor has determined that she is ready for hospice and I'm glad for their help. Hospice took her off medications that didn’t seem to be helping and then prescribed some occasional Ativan for agitation and low-dose morphine for pain. Her response has been satisfying to watch since she’s more alert and far more peaceful than she has been.
Here’s the problem: I’ve gone to a support group for several years and there are a couple of people in the group that are completely anti-drug for Alzheimer’s so they are adamantly against the use of both Ativan and morphine for my mom. I don’t get it. Mom is dying. She was jerking around in pain and crying and now she’s responsive and comfortable. How do I get through to them that when people are dying everything changes? - HY.
Dear HY: I’m sorry about your mom getting to the point where she requires hospice care, but you are doing the right thing. To me, it's unconscionable that these people who are supposed to be supporting you are treating you in this manner. They may mean well, but they are misinformed at best.
To clarify, your support group friends are correct - to a point. Many drugs are especially bad for people living with dementia. Geriatricians and others have been fighting for years against the use of antipsychotics as a method of chemically restraining people who live with dementia. Even other drugs, including those that your mom is now being given, could cause confusion, contribute to falls and further impair the mind of someone who is living with dementia.
This is not to say that these drugs should never be used, but they should never be the first consideration when someone with dementia exhibits agitation or anxiety. Non-drug therapies can be highly effective and should always be tried first.
What your friends choose not to understand is that your mom is now beyond that. She still needs all of the non-drug therapy available when it comes to trying to determine what is making her anxious. However, if her condition requires medications that can control both her anxiety and her pain so that she can live her last weeks or days comfortably, then that is what she should receive.
There’s no reason for you to explain further to these people in your group, but should you want to anyway, I’d suggest that you ask hospice for material that can help you make your case.
I hope that you’ll be at peace with the fact that the hospice doctor will likely increase your mom’s morphine if she shows signs of pain breakthrough. You don’t want her to suffer, and right now your mission is about her quality of life for the time that she has left.
Blessings to both of you.
Carol Bradley Bursack is a veteran caregiver and an established columnist. She is also a blogger, and the author of “Minding Our Elders: Caregivers Share Their Personal Stories.” Bradley Bursack hosts a website supporting caregivers and elders at www.mindingourelders.com. She can be reached at firstname.lastname@example.org.