Dear Carol: My mother has been in a nursing home for over a year due to back-to-back strokes. She’s only 74, so this has been a hard adjustment for everyone. She has minor dementia symptoms due to vascular dementia which I’m told is common after strokes.
My problem is that during a video chat the floor nurse casually mentioned a reaction that mom had from a medication change that I hadn’t been told about before. I try not to be overbearing when it comes to Mom’s care, but since I haven't been allowed to see her close up, it seems more important than ever that I’m kept up to date. They do a good job in general, but to me, that includes sharing important information with me. I was nice, but I told her that I expect to be informed about any changes. Am I out of line? — KD.
Dear KD: I understand your worry. This situation could reflect a genuine error or even miscommunication about your rights and your expectations. In my opinion, you aren’t out of line as long as you’ve been open about these expectations and they have written permission for you to be your mom’s health contact.
When I think about these questions, I ask whether or not a facility has provided good care along the way, as well as how they’ve dealt with any past disagreements. A care home that keeps our vulnerable loved ones safe when we can’t do so ourselves is a treasure, so it's good to work with them in a friendly manner. Conversely, a care facility that has a poor track record could be another story and may require a different approach.
While family members should not dictate to the medical staff what medications should or should not be used, I do believe that we have a right to know about medication changes, to offer well-researched opinions and even question a prescription or diagnosis. One reason for this is that changes that could be due to medications or treatment may be more evident to us than to staff since we know our loved one's unique history.
Granted, at this time of dealing with COVID-19-related forced separations, communication is more difficult, but we still should be included in every way possible. Fortunately, in some areas, nursing homes are beginning to allow one family caregiver to visit in person daily. There will be a strict protocol involved in these visits as there must be, but separation from family is taking an enormous toll on our elders, so we need to work toward some balance.
COVID or not, working out a system where families are given the health-related information necessary for them to be care partners with their elders and the facility should be automatic unless otherwise prohibited. I’m hoping that this unfortunate event was unusual, but regardless, you need to do what's necessary for you to stay updated on your mom's medications and her general condition, as well.
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 through the contact form on her website.