I’ve written a lot about what it’s like to have a mom with dementia and its effect on me. If you do a quick search on dementia or Alzheimer’s Disease you’ll find all kinds of information: early symptoms, how to make things easier for those who have it, what it’s like to have a parent or loved one with the disease, and online communities to join, just to name a few. There is no shortage of sites where family caregivers can get specific support or information; faith based, memory care, in home care, respite centers - it’s all there.
However, I’ve noticed that there’s a very particular group of people who are not represented well and who have very little online resources for support. What about the people who have chosen caregiving as a career? I decided to make a few calls and find someone in the caregiving industry who would be willing to talk candidly with me about what they see, what motivates them, and what they really wish we, as family members, knew.
I found Erika*, who has worked in the industry for over a decade in multiple positions and locations. I had a list of questions for her and I thought I had a fairly good idea of how those questions would be answered. As it turns out, I was mostly wrong.
I expected to hear how difficult the job is, how hard it is to deal with combative residents, and how the families have no idea what the staff has to put up with. I wasn’t expecting a laundry list of complaints, not by a long shot, but I did expect to hear about what it’s like in the “trenches” so to speak.
Yes, I did hear about the difficulties of the work the caretakers and managers do; however, for the most part, I heard about why the people who care for our loved ones show up every day, why they stay late, and why this job is more than a job.
It’s a part of who they are.
I started by asking Erika to tell me about some of the biggest challenges she has faced in her years of working in assisted living and memory care. She explained that one of the toughest situations is when a family has unrealistic expectations of what will happen when their loved one is moved into memory care or assisted living. The family may think this is temporary but usually whatever has made the move necessary is going to progress. That truth is hard to hear and it can take some time to process. Or, perhaps there is one family member who refuses to acknowledge there’s a problem and therefore, to them, it doesn’t exist. It’s a scary situation and it’s a lot to wrap one’s head around; however, stalling can result in a lot of stress and resentment in addition to a delay in getting help. However it happens, eventually the reality can no longer be ignored.
Sometimes, a family can be blindsided and they’re forced to deal with something they never knew existed.
Erika told me a story about a husband and wife, we’ll call them Larry and Ann, who had lived and worked on their farm their entire life together. Even though the location of the farm was remote and the work could be hard, they seemed to be keeping up and doing well according to their children. One day, Larry unexpectedly passed away and it became immediately evident that he had been keeping something from his family - Ann had dementia and he had been masking it for years. Without him, there was no way she could live there and take care of herself, let alone the house and farm.
None of their children had any idea.
Ann now lives in memory care and, every once in a while, she’ll share a memory of her days spent with Larry on the farm; when she does, her eyes light up and a wide smile brightens her face. It’s fleeting and it doesn’t happen as often anymore but the happiness she feels when she remembers lingers long after the memory has once again faded away. It’s those small glimpses of who the person used to be that can bring joy to the people who care for them.
I then asked Erika what kind of challenges the people who work directly with the residents have to deal with and what it’s like addressing those challenges. She replied that the largest issue comes from a lack of dementia education; while there is ongoing continuing education it can be unstructured and short on time.
Without in depth education about dementia and the behaviors of those with the disease, it can be difficult dealing with a resident who is resistant or having a difficult day. Some of the staff can be “old school” or task driven and become frustrated when the routine gets interrupted because of behaviors they may not have learned to understand or interpret.
Through education, the caretakers can learn how to respond in a way that benefits both them and the residents. Recently, the staff did have the opportunity to go through “The Dementia Experience” which is an interactive program that allows the caretakers to experience some of the symptoms and challenges of the disease. It was an insightful experience for everyone and it did make their understanding of some of the behaviors they witness clearer. Having the ability to see the “why” behind what the residents do helps the caretakers be better equipped to handle problems when they come up and lowers the levels of the stress for both sides.
Some of the other challenges the caretakers experience came as no surprise since I have witnessed it a few times during my visits with mom. They are sometimes physically attacked, yelled at, and called names and racial slurs - yet they keep coming back. It’s certainly not for the money; according to www.salary.com, the median salary for a certified nursing assistant is around thirty thousand per year but can be as low as twenty thousand per year, depending on years in the industry and certifications.
So, why do the caretakers return day after day? I’ll share more of my conversation with Erika in my next post.
* To protect my subject’s identity, their name and other identifying characteristics have been changed.
