Caregiver 101

People often say to me “I don’t know how you do it." My reply is always the same “I had no choice." No one wants to be a caregiver to their newborn baby in heart failure.

Life takes crazy turns

I can vividly remember watching a movie on tv about parents who found out that their child needed a heart transplant, never guessing it would be me someday. My thoughts were “I would never be able to handle that, those poor people." Life takes crazy turns and sometimes we end up in positions that we don’t want to be in.

Fight with everything you have

Looking back, my best advice is to fight - fight with everything you have to be the best advocate for your loved one. The shock will set in and you will not be able to absorb what the doctors are telling you.

What I found helpful was to have a pen and paper handy at all times when we spoke to anyone from the hospital. Often I would lose focus on the information the doctors were giving me. I would react to the news and not remember what else was said. Or try to spin the information in our favor in an unconscious plea for help.

Document every conversation

It might sound awful at this stage to say get your insurance in order at the onset of the crisis, but it will save you valuable time and energy and help to ensure that your loved one gets the proper care they need for the future. You may need to find a hospital or physician more suited to your needs and it's best to know your options. Again take out that folder or pad of note and document EVERY conversation, dates, bills, and names of people you spoke to.

If you are the caregiver I’m assuming you have first-hand knowledge of the patient. Please don’t underestimate your gut feelings on their situation. We are not doctors but we know our loved ones and can help by sharing that knowledge.

A part of our loved ones' care

As a brand new mom, I was so proud of myself and excited to give all the typical care a new baby needs. The care of the umbilical cord, diaper changes, baths, feedings, etc. My baby was now hooked up to machines and wires from every part of her tiny body.  It was important for me to continue to care for my infant and I’m thankful I had a team of doctors and nurses who understood that.

They would place her in my arms so I could hold and rock her even though it meant re-arranging wires and machines that took a half-hour to move. I emptied, her urine bag and helped with any little procedure I could safely do. We need to relinquish care to the professionals but we also need to feel in control and a part of our loved ones' care.

We often have no choice

We can do this, we often have no choice. We don’t want to be in this situation, but we are and can fight, fight, fight and then deal with all the emotional trauma and stress you have endured when things are calm. You WILL need to address your issues for the long haul. Stay away from the “what if’s” and preparing for the worst. It left me depressed and a mess.

What I have learned to do is deal with each issue one day at a time. It allowed me to be present with my daughter and not trying to figure out things I really had no control over. Last but not least, have faith that you will make it through this difficult time and adapt and thrive in your new role as a caregiver.

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