Agile Elder Care – You Are Not Alone

Welcome to this third article from our daughter, Sarah Wills, who blogs periodically (striving for a weekly basis) on the topic of “Agile Elder Care.” We hope that her series will encourage people who find themselves taking care of aging parents, grandparents or other loved ones to “not become weary in doing good.” We also hope that introducing you to a way of doing work called “Agile” will help you to provide your loving support in a more effective way, serving their entire mind, body and spirit to the best of your ability.

In His Service,

Brian & Dawn Wills

*****

Blog entry: 4/7/18

People Are Afraid of What They Don’t Know

My grandfather is one of the elders I’ve been caring for over the last few weeks. He has been feeling very overwhelmed by the feeding tube he has recently gotten and, since he doesn’t know a lot about it, it is scary to him. It’s a Kangaroo Joey mounted on a pole with two hooks for food and water, plus wheels so he can roll it around from location to location. He says that “just looking at this thing gives me anxiety.” The unknown is always uncomfortable and can be intimidating, overwhelming, and often daunting. I noticed that he has been spending a lot of time stressing over what could go wrong for the last week or so and, since I was unfamiliar with it as well, I decided to do some research.

After a quick Google search, I was relieved to find that I could get a little backpack to hold the Joey for his G-tube. This way he’ll be able to move around the house a lot easier and therefore help reduce his anxiety since he won’t feel as stuck. While looking at the astonishing variety of backpacks, it occurred to me that must mean there is a large demand for these. They have everything from foxes to hedgehogs to the Avengers to the calming blue one that we have picked out for him. That means there must be a lot of people who are dealing with the same thing he is!

Another quick search led me to the Feeding Tube Awareness Association that is a wealth of information and resources. On their website, I found out that feeding tubes are a lot more common than either of us had realized.

“I learned it’s pretty hard to mess up a feeding tube!”

One of the first things they talked about was what to do if it got yanked out of place. Here my poor grandfather is stressing over whether or not he has cleaned it well enough for the sixth time today! We had both been excessively cautious and it was such a relief to know with confidence that we weren’t going to miss something small and have it result in disaster. Learning about his specific condition really helped to calm my own anxiety.

You Are Not Alone

I showed him the website with its stories of others who are living with the same thing he has, overcoming their anxieties and frustrations, drawing comics and making memes that laugh about the difficulties anyone with a feeding tube has surely faced.

There was even a spot for photos of tattoos that people are getting of a feeding tube in the shape of a heart. In the section on “new to tube feeding” the first two headlines are “You are not alone” and “There is support.” Those two phrases visibly put him at ease. I don’t know why I didn’t think of this earlier, but when I walked him through this website and he saw how many other people are dealing with his same frustrations and challenges, everything seemed a lot less scary. I would definitely encourage you to look online for Facebook groups or websites or associations that have support for whatever your elder is going through. Walk them through it if they are not tech savvy. There is so much to be said for community and feeling understood!

The Only Constant Is Change

In Agile, value is placed on responding to change over following a plan. It’s important to remember this as you are working with your elders. Sure, this week my plan was to do some deep cleaning at my grandfather’s house and read some articles about how Scrum and Agile work, but it quickly became apparent that easing his anxiety and helping him see things in a more positive light was a higher priority. I was able to respond to that change in priorities quickly and easily, and the cleaning and chores will be there tomorrow.

People First

Agile also values individuals and interactions over processes and tools. The tools and processes are still important. However, showing my grandfather the stories of other individuals who are going through the same thing as he is and laughing over a comic about the mess that can happen if you forget to unclamp a tube while administering meds was a far more effective way to ease his anxiety and make this equipment less scary than handing him the manual would have been. The interaction between him and I was also key – I didn’t just tell him to look it up himself. I was able to be side by side with him, using our interaction to make this medical tool less daunting.

As a caregiver, I know that you definitely care – it’s in the title itself! The key is getting that intent to be heard, known, and felt on the receiving end. Agile will help you accomplish that.

“Agile’s ‘dirty secret,’ as my dad likes to call it, is that it truly cares about the wellbeing of people.”

The four pillars of the Agile Manifesto will help you improve your product, which in the realm of eldercare equates to better care and a higher quality of life. We’ve already been over two, but I’ll list all four here. Since this process was originally designed for software development, I have some adjustments in parentheses.

Individuals and interactions over processes and tools

Working software (quality care) over comprehensive documentation

Customer (patient/elder) collaboration over contract negotiation

Responding to change over following a plan

*While there is value in the items on the right, we value the items on the left more.

It’s pretty easy for me to see that this process can extend far beyond just software development and can easily apply to any complex challenge. I’ll be referring to and exploring these pillars and their implications in eldercare more in the future. For now, remember that it’s more important to respond to changing needs than to follow the plan and to value the individuals and interactions over the processes and tools.

You’ll notice this ties into last week’s article on self-care. You can adjust to your priorities as they change, and if there’s one thing you can count on, it’s that things will change. That’s built right into the Agile Manifesto! Success is just a few adjustments away and regular retrospectives will help keep you on the right track. This weeks’ retrospective keep/stop/start is what brought me to the Feeding Tube Awareness Foundation, because we put “dragging around this heavy pole” under “stop” and “find a more mobile way to administer feeding” under “start”. By responding to change, we were able to accomplish some invaluable emotional work this week.

What Support Can You Find?

Hopefully this process is already helping you as you care for the elders in your life – just as it is for me with mine. This week, won’t you take a few minutes to look and see what kind of support is available to you – what communities, associations, or even Facebook pages are there that will help to remind you and/or your elders that you are not alone?

Responding to change,

Sarah Wills

*****

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