Home is a place of comfort, vulnerability, and true self. As a caregiver, bringing recovery into this space may present itself as a challenge. What it truly is is the opportunity to make healing a more genuine, personal experience for your patient.
Being a caregiver doesn’t always mean you’re watching after someone when they can no longer care for themselves. It’s providing help where help is needed.
Caregivers may be healthcare professionals, or adult children making the shift from being cared for to caring for their parents. Environmental factors can be a huge factor in the process of patient healing. Whether the patient is your grandmother, father, or best friend, there are steps to take before enduring the pain and emotions of bringing a loved one home.
Rather than believing your new role is to be in absolute control over another human, sit back and observe. What type of care would you like if you were them? Which settings do they respond well in? What makes them smile? Learn as much as you can about not only their condition, but how it may be impacted by different environments. The better you connect with the patient, the more you’ll adapt a mindset of providing the most effective, comfortable treatment possible to their needs.
In-home caregiving often brings a sense of guilt. As you become aware of all there is to be done, it’s easy to convince yourself that you haven’t done enough already. This feeling—empathy, is inevitable, and it happens because you care. Guilt, financial stress, dependence and loneliness are likely to make themselves present. Try your best to engage in activities that keep you grounded and aware of the fact that all these emotions are natural.
Included in the Caregiver’s Handbook, a resource put together by The Healthy Balance Research Program to discover the impacts of caregiving on one’s well being, “Defeating the challenge makes the rewards that much greater.”
Whether it be a nursing facility admission or returning home, trust your instincts. You know to do the right thing for the sake of the patient’s best care. Think to yourself, who knows the patient best? Although clinicians may understand the standard procedures within their healing pathway, you can contribute a unique glimpse of the patient that only someone they deeply trust may discover.
Gail B. Rattinger et al. published an article to the Journal of the Alzheimer’s Association forecasting that caregiver closeness predicts lower dementia informal care costs over time. While closer relationships strongly improve emotional well being between the patient and caregivers, more orderly care can be beneficial to all parties involved; including those facilitating the care.
Take a deep breath and remind yourself what therapists do for a living. They study human life and the capacity to care for it.
Don’t anticipate the need to suddenly complete years and years of professional training and education just because someone you’re close to now needs the help.
Consider an aid or caregiving coach to not only help your patient heal, but to allow yourself time to grieve and process this new experience. Set boundaries and expectations with everyone involved, and encourage your loved one’s independence along the way. Take turns determining who can help. With what activities? Which days? Be realistic about how much energy you can put into each commitment.
Conversations with Equity Reference Groups including immigrant women, African Nova Scotian women, women with disabilities, and Aboriginal women contributed in large to the Caregivers Handbook, including “That one trip to the grocery store each week could be the difference between stable and crumbling mental health. Caregiving does not mean you stop caring for yourself.”
You will be more aware of the negatives before being able to experience the positives of spending so much personal time with the patient. This is a precious time that you will cherish forever, whether you know it now or not. While you may feel scared, remember that they’re scared too. There comes a difficult yet rewarding point in life where it’s time to be there for those who have been there for you.
Understand that rarities do exist. Every person, every condition, and every case of each condition will be different from the next.
Ehlers-Danlos syndromes (EDS) and hyper-mobile spectrum disorders (HSD) are a group of conditions that affect connective tissue beneath the skin, often going unnoticed to the unconscious eye.
People with these conditions are known to identify themselves as zebras.
From the Ehlers-Danlos Society, “No two zebras have identical stripes just as no two people with an EDS or HSD are identical. We have different experiences—and we are all working towards a time when a medical professional immediately recognizes someone with an EDS or HSD, reducing the time to diagnosis, and improving pathways to care.”
Don’t be afraid to speak up. Share with a professional something you notice, even if it might not sound clinically correct. All knowledge is beneficial. For all you know, you could improve their own practice by giving them pivotal information that may have been lost amongst rounds of treatment elsewhere.
On the topic of coping with a loved one, Dr. Brené Brown put it to perfection; “In order to empathize with someone’s experience you must be willing to believe them as they see it and not how you imagine their experience to be.”
It’s easy to feel lost when it comes to healthcare, an industry so crucial yet so concealed to the public. Finding the right programs and information, even knowing the resources exist can be hard when facing it for the first time or alone.
Doing the research doesn’t just mean the first thing you find online. What solution is “right” when you search one question and end up with a thousand results?
Get to know the habits of your loved one, and keep track of what may be a trigger to their pathway. Write down habits, medications, reactions— any and all factors that may serve you in the future. Share your findings with a clinician. You’ll be surprised how much you can teach them just by knowing your patient so well.
This take on journaling will also help you, the caregiver, stay mentally stimulated and mindful throughout the journey. Record the thoughts and observations of both you and your loved one, and reflect throughout your shared time together.
Develop a daily care plan. Keep all resources posted to your fridge, bedroom door, bathroom mirror, or anywhere that will be a reminder to stay consistent.
Introduce yourself to the idea of using patient management softwares that may help you keep track of patient progress and maximize their treatment plan. Wouldn’t it be nice to have just one place to look, one set of instructions to read, accurately predicted according to your loved ones history?
Healing should be pain free. With the right needs in mind, care technologies have the ability to provide the tools for both patient advocacy and caregiver efficiency.
Our mission with Theralytics is to go beyond just that.
