No one ever really “plans” to be a caregiver. I know I never thought about it, beyond maybe providing ginger ale and crackers for someone with a stomach bug. But that slowly began to change after I met Nicola over 10 years ago. (Spoiler alert – she’s now my wife!). You see, Nicola had been diagnosed with PSC a few years before we met, forever changing her (and now my) appreciation of what it means to feel healthy.
Most days, we live a normal life (and she’s actually my caregiver!). But other days require a little more from me in the caregiver role—days when she’s not feeling her best or days when we have an important doctor’s appointment or “tune up”.
Unfortunately, diseases like PSC affect people of all ages – which means there’s no “typical caregiver” age or profile. And, since there typically isn’t a specific moment when you officially become a “caregiver”, there also isn’t a manual or template you can lean on. Rather, caregivers typically find themselves taking little steps along the way to help—until one day they look around and see the entirety of the journey they’ve been on with their loved one.
Our experience over the last 10 years has helped us compile a few basic do’s and don’ts that can serve as a helpful guide through the all-important journey of a caregiver. In addition to these tips, we’ve found it’s important to maintain an empathetic approach to your loved one and an understanding that sometimes just being there is enough – even if you can’t provide a solution to every problem.
DO’S
Take care of yourself, too. While it’s easy to focus all your energy and attention on your loved one, keeping yourself physically and mentally healthy is just as important. It’s okay to take time for yourself – because being healthy will make you a better caregiver in the long-run. Don’t skip out on appointments for yourself. Set boundaries for yourself and clear expectations with your loved one so everyone knows the limits.
Take notes and be clear on roles and responsibility before each appointment. Appointments can be very overwhelming for patients. They are often filled with too much jargon or information – or sometimes they are just emotionally-overwhelming for someone already battling so much. Be clear with your loved one the role they need you to play – sometimes it will be as simple as acting as a scribe, while other times they will need you to carry the conversation and ask questions so they can process. Regardless of the role, it’s important to be proactive in your approach. Take the stress off by keeping a notebook of all appointments, tests, symptoms, questions, which will help you and your loved one debrief after the appointment and will be useful in maintaining consistency as medical professionals change throughout care.
Set up a CaringBridge site. Keeping friends and family updated can become very time consuming. Nobody has time to answer each text message or email with detail. Setting up a blog or a site like Caringbridge.org allows you to provide detailed updates to whomever wants to subscribe. It’s a very efficient way to keep everyone informed. And, the patient will love reading messages from their friends and family.
Understand insurance/Medicare. Paperwork can add up and become very overwhelming. Take a few minutes to speak with the patient’s insurance company (some companies even assign a health care advocate to each patient!) to understand their benefits. That way, when the bills come in you will be able to prioritize which ones can be paid and which ones might need a follow-up phone call before payment.
Be organized and prepared. Health conditions can carry uncertainty so it’s best to be prepared for everything. Try not to leave bills, paperwork, or prescription refills, among other important recurring items, until the last minute. It’s best to stay on top of what you can so if/when a plan or situation changes, you’re able to focus on the patient.
Laugh! The old saying is true – laughter is the best medicine. Caring for someone can have some comical moments – enjoy them and the time you’re able to spend together. Laugh together and remember those funny moments when the times are tough.
Allow yourself to feel your emotions. Sadness, or even feelings of resentment, are perfectly understandable in the tense or overwhelming situations a caregiver can find themselves in. It’s okay to have these feelings and to confront them. However, just as important as it is to confront those feelings it’s equally important to move forward from them and not dwell on them. Make sure you find an outlet – maybe even your own emotional caregiver – so you’re not transferring negatively to your loved one.
Delegate. Some tasks can be given to those who are not able to be the primary caregiver – things like meal prep, house cleaning, errands, etc. Other people want to help. So don’t be afraid to assign tasks when needed. Not only will it ease the burden on you and your loved one, but it will help solidify your support network and allow others in your social circle to contribute. Roles will evolve throughout the patient and caregiver journey, so it’s important to have many resources.
DON’TS
Make your recipient feel guilty. Their health is out of their control and they would give you the same amount of care if the situations were reversed. Blaming will not help anyone. You both are doing your best – so celebrate the milestones.
Expect your family and friends to help as much as you do. In a perfect world, everyone would want to help everyone but unfortunately, that’s not the way it works. You will find each family member can contribute a certain amount and try to remain grateful for all that they do – even if it doesn’t match up to your level of commitment.
Stop doing what makes you happy. It’s important to keep doing what you love when you’re taking care of someone else. They want you to have an outlet and having that outlet will give you a bit of time to recharge. You need to live your life too.
Stop advocating. Your patient needs you to be strong for them. Sometimes a patient is in such a state that they cannot speak up for themselves to question a procedure, test result, or treatment. If something doesn’t feel right to you, speak up. Sometimes the questions not asked have more of an impact than the ones that are asked.
Override orders from medical professionals. Let the doctors do their jobs and don’t ignore their orders if you think you know better. If you’re not comfortable with the plan, it’s important for you to ask the doctors any questions so that you are comfortable.
