Learning Tools for the Family Caregiver

Amy-9
(Editor's Note: We welcome Amy, who cares for her mom, to our blogging team today. You can connect with Amy at her profile page: @musicallyminded.)

ToolsThis is my first post on Caregiving.com! Hopefully this will be the first on many blog posts (or at least more than just this one)!

My first college forays happened at the ‘expected time’ -- right after high school. I hadn’t applied to any major universities, so I went to a community college that my friends a year ahead of me were going to. We carpooled and it was great. I didn’t have extensive study skills, but I was able to do enough to do fairly well, but something was lurking in the background of my personal life. My mother fell and broke her hip in the early morning of my first day of spring quarter (on April Fool’s day no less! How cruel!) My mom has lived with Multiple Sclerosis (MS) for longer than I’ve been alive. In retrospect I had done small caregiving duties for the majority of my life, but they were not significant or time-sucking. After the hip break that changed. Taking the bus to the hospital after college, now being the only one who could drive in the house, thus becoming the only errand-runner.

My mother wasn’t able to do her job in a wheelchair, and her company gave her a different one that was computer-based. Her new task was to learn how to do this job. I found out that MS had sucked her cognitive abilities, and she was not able to learn it, despite many efforts on her boss’s part to help her, giving her adaptive equipment and even coming to our house for one-on-one coaching. My mother then quit working and I realized she not only needed physical care while recovering from her broken hip, but also assistance with different aspects of her life. Coordinating doctor’s appointments, paying bills, making decisions, and other home responsibilities were all up to me.

I was still going to college full time, and it would work for a while, but at some point normal college stress would compound with my new caregiving roles and I would get overwhelmed and shut down. For too many quarters I tried to manage all my duties, and would not succeed in all areas. Not only that, but I would beat myself up about it, thinking “but other people my age can do college full time and work and still succeed, why can’t I? I must not be good enough.”

Finally I realized this wasn’t working, and left school. That was a year ago. This fall, I will be returning to college with a scholarship from the MS Society. I was very apprehensive about this, since I’m out of practice. By chance, I discovered a website called Coursera.org, a site with college courses you can take online. There is a free one called “Learning How to Learn.” How appropriate! I am on Week 3 of the 4 week course, and an optional assignment is to teach others how to learn. In the course, I have seen many techniques that are applicable to common issues caregivers face, and I hope to outline them in a helpful way here!

One of the biggest pieces of advice given to caregivers is the concept of “self-care.” There are numerous online articles that seem to say “just take care of yourself more  and you’ll be fine!” Caregivers have more than a few qualms with this notion. They might say “Where is the time to do that?” if they don’t have others to trade duties off with. And since caregiving intensity can vary day to day, it’s hard to schedule in self-care or a weekly group yoga class, for example. And for many caregivers, days off or a week-long vacation is impossible. So how can self-care happen? With little breaks for you. The Pomodoro technique is a method of learning or working where you spend 25 minutes of totally focused attention, and then reward yourself afterwards. It is easy for me to work myself into the ground, but taking little breaks can make your learning/work more sustainable. The self-care breaks don’t have to be hours-long, just little things like mindfully drinking your coffee can be restorative. These actions can give you time to take a breath before you begin again. I also learned about the “Attention Octopus,” the metaphorical holder of the approximate four items you can hold in your working memory (short term storage). If you are stressed, your octopus begins to lose the ability to make connections and process thoughts. This is why you don’t work as well when you’re angry, stressed, or afraid. All the more reason to ‘Treat Yo Self’ (Parks and Rec, anyone?).



Another caregiver challenge is surprises which can lead to becoming overwhelmed. If the person you’re caregiving for has a rapid change in their health, like my mom’s broken hip, you often have more duties on your plate, and may need to research new things. This is learning, although often not a fun kind. When your brain learns it is in one of two modes focused, or diffuse. Focused mode goes along with its name. It is intentional work with total concentration and...focus. Also, it is more effective to space out several focused mode sessions, rather than cramming into one long session. This space gives you time for diffuse mode. This mode happens without your knowledge. It is when your brain processes the information while you’re doing something else. It is background work that helps make connections and build conceptual understanding. This often happens when you’re sleeping. So that “sleep on it” phrase has truth to it! Studies have shown sleeping makes a significant difference in your ability to figure out difficult problems and understand what you’re trying to learn. Sound applicable? If you can help it, don’t make any big caregiving decisions without leaving time for diffuse mode and at least one focused mode session. It’s good to give your brain a break.

Stress can be a constant factor in caregiving. Constant stress can lead to burnout and, for me, panic attacks. Whenever I would ‘zoom-out’ and realize that since MS is a progressive disease, my caregiving duties would most likely get tougher and continue for future years, I would think about how it seemed like I’m barely surviving presently, and how could I ever handle the future? Cue panic attack. Although periodic feelings of overwhelm will pop up, there are ways to take control! One of which is remembering that have survived up to this point, and you have resources and tools to use for future challenges.

Another is the concept of focusing on ‘processes’ over ‘product’. Product is the end result, which can be undefined in caregiving, and process is the steps and work to get there. By breaking up the end goal, which can be insurmountable and overwhelming, into manageable small steps we can incrementally work towards achieving the end goal. I found this extremely applicable because often caregiving tasks can involve an indeterminate number of steps. Take the seemingly simple task of refilling my mother’s MS medication last month as an example. It should have been a one step phone call, but not so. The first representative I spoke with couldn’t find my POA (power of attorney document), so I had to re-fax it to them, and wait an hour for them to process it and then call them back. Speaking to another representative, they showed that I should have received an automatic call a few days prior to schedule the delivery, which I did not. They also didn’t have the proper address on file, so I had to update them and wait for it to be processed before I could schedule delivery. You can see how seemingly simple tasks can expand into many unforeseen steps sucking your time. To better organize these steps, start a journal with tasks you need to do every day. It is best to do this at nighttime, so you can relax and are not consumed with “what if I forget?” thoughts when trying to go to sleep. By focusing working on individual steps, you can get in the zone of working, and keep your focus away from thinking about how many steps it will take and how arduous the journey could be to get where you want. Focusing on process instead of product can also remove self-judgement by turning the shame of “why haven’t I completed this yet” into the empowerment of “I’m doing these things to work on it today.”

I hope you find a technique or two that could be helpful for you. Caregiving isn’t easy, but there are tools to help. Thanks for reading my post!

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