Advice & Camaraderie for Caretakers of Loved Ones

I started Cancer Sherpa because I have repeatedly experienced how hard it is to navigate the morass of the American healthcare system. I have worked with everyone from family and friends to referrals and strangers, and I have always fought for them from the perspective of the patient. Three weeks ago, however, I was brazenly reminded of how much harder it is to do the same for a loved one when I became a caretaker.

I received a call that a nuclear family member was rushed to the hospital by ambulance and that their condition was so critical, they were being transferred to the ICU as soon as the bed was available. Four hours later, I was on a cross-country flight – and got there 10 hours after I had hung up the phone. Even as a seasoned sherpa, I learned many new skills from being inside of an ICU for five days, and gained inside experience navigating the hospital system during a pandemic. However, my primary takeaway was that it is imperative to allow caregivers, personal or professional, to advocate for their charge during critical health events, as the patient is often too ill to do it for themselves.

I’m sharing my experience and learnings from this unique situation as a resource for anyone acting as a caregiver for a loved one right now, or who perhaps knows someone in this situation that needs support and guidance. You are not alone.

Navigating the ICU and step down care as a caretaker

Anyone in the ICU needs at least one family/friend advocate, or a professional one, as they are so ill, sleep-deprived, and concentrating on the immediate medical procedures in front of them that they cannot be expected to concentrate on anything other than getting medically stable enough to get out of the ICU. When you’re a patient in the ICU, it’s difficult to process what is happening in real-time, much less see their larger, long-term health picture and ask future-facing questions. Patients may not be able to care for themselves even once they are stable, as it is challenging to get into the rhythm of hospital rounds, shift changes, medication dispensation, and general care to get consistent sleep.

Since the patient cannot do many things for themselves, as a caregiver, you have to take on and manage all of these vital logistics – and that’s often from afar, as visitation in ICUs is very limited, even when our country is not fighting a pandemic. You know your loved one best, so, during your visits, talk to them to see where they are, what they need, and how they feel about their treatment protocol.

Caretakers and COVID-19

In that vein, doing all of this during a pandemic is exponentially more brutal, even for professionals with extensive networks, as ICUs and hospital beds are overwhelmed by COVID patients. As many have unfortunately learned from experience, this makes visitation for any type of patient harder, as there’s the added layer of concern about COVID transmission on top of everything else. Thus, often the flow of information from a healthcare provider to patient, let alone between healthcare providers, is heavily impacted and a caregiver is necessary to assure follow-up.

On the workforce front, it can be difficult to find doctors and healthcare workers with the capacity to accept new patients or even perform procedures, especially cardiologists, cardiothoracic specialists/ surgeons, pulmonologists, anesthesiologists, trauma physicians and surgeons, intensivists (ICU doctors), and general practitioners. Healthcare workers are at their wit’s end, and rightfully so, as so many of the COVID cases coming through their doors were preventable.

Facilitating follow-up care

While caretakers are around to mind patients, the experience can take a serious toll on them, which shouldn’t be ignored or pushed aside for later. In fact, after a patient’s time in the ICU or trauma unit, caretakers are often more exhausted than the patient themselves. They need to make their health and well-being a priority for everyone to convalesce.

As such, caretakers and patients need to widen their sphere of help. Coming out of a high trauma event, the stress binds the patient and immediate caretakers together, but everyone needs help. Plainly put: it is essential to let those who can help, help. A few insights:

1. Unless medical professionals instruct otherwise, encourage the patient to start to get back to their regular routine. It is natural to continue to want to care for someone; however, they too have to own their recovery ahead and need to take part in it

2. Expect that the patient may take out their anger and fear at what has happened/is happening to them out on you. It is impossible to get mad at or look a disease or injury in the eye so that patients may take it out on you

3. There will be an end! Even if a chronic illness or condition arises, the immediacy of the event will dissipate, and everyone’s adrenaline will start to wane. This can be the most challenging part, as going back to your usual routine may seem mundane or unfulfilling as you just dealt with a life and death situation

4. On that note, don’t try to go back to normal, because really, what is normal? Take what you have learned from the immediate event and allow yourself to continue to process it over time. Talk to the patient about your feelings and let them know that you wanted to be there for them as they are most likely struggling with the same issues. Remember, as a caretaker, it is likely that you will process things quicker than the patient (you were always able to see and navigate both macro and micro issues), and that is okay

5. Be kind to yourself. No one, not even EMTs, nurses, physicians, and surgeons can successfully live at such a heightened state of vigilance.

Getting a handle on long-term logistics

There are often a lot of pieces to manage, and this is where finding an ally that can answer all your questions is vital. Seek guidance from a professional advocate, the social worker assigned to your loved one’s case, the nurse your loved one regularly sees in the clinic (or got to know in the hospital), or the general physician overseeing issues post-specialty care.

Logistics can be lengthy, so we break them down into two categories below.

Follow-up care:

• Bloodwork and vitals
• Scans and testing
• Medication and homecare
• Physical and occupational therapy
• New and existing medical appointments

Needs:

• HIPAA: Educate yourself on these laws and regulations, and what a caretaker may have to do legally and logistically to manage another adult’s medical record and care
• Transportation
• Nutrition and diet
• Exercise
• Psychotherapy and support groups for patient and caretakers
• In-home medical and/or physical healthcare support
• Transition of former responsibilities of the patient that they can no longer perform
• Family/household support for all of the above

This is something of a blueprint for caretakers in any situation, but more than that, it is a reminder that being a caretaker for a loved one does take its toll. While this is centered around an acute event, we are also here for long-term acute and chronic health events. We are here for you, whether you need help navigating your loved one’s journey or have general questions on the above. We’d love to hear from you, so click here to contact us today.

Clare Matschullat, Founder, Cancer Sherpa