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A Letter to Caregivers: Here Are the Words You Don't Hear Enough

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Dear caregivers,

It’s hard being a patient. However, being a caregiver is complicated, too. You feel for your loved one and sometimes worse, you can actually see the pain they’re in. As patients, we feel and communicate the pain to the best of our abilities, but we don’t see ourselves — you do.

Not only do you see the pain and struggle on our faces, you hear it in our voices and feel it in our hugs, while at the same time dealing with everything else that’s happening around us. You are often the ones who prevent so-called “healers” from making a difficult situation a deadly one. You advocate endlessly, constantly on guard. Making sure we get the absolute best care the facility has to offer.

In that place, that is our second home. Sometimes, even from health care professionals, you endure humiliation and doubt that you are capable of caring for your loved one. Despite being with the patient day in and day out, for years and even decades.

As you fight for the most basic of services and the acknowledgement of not only your loved one’s pain, but yours as well.

As you’re told that your knowledge is irrelevant because you don’t hold a medical degree or license.

But sometimes the formal education of these “experts” excludes the training and facts necessary to care for your loved one. Thus, your opinions, wants, protests, observations and directions are often ignored. To make matters worse, their egos won’t allow them to read the chart or care plan. Let alone speak to the primary care physician or specialist who’s saved your patient’s life numerous times.

It’s frustrating, irritating, frightening and enough to make anybody lose it. Just when you think you’re going to crack, you are reminded that your eyes, ears and mind must be on guard at all times because no one else’s are. You go on mentally, emotionally, physically and spiritually… exhausted. Driven by unconditional love and hope that better treatments — or dare I say, a cure — will soon come.

You rarely hear, “Thank you,” “Good job,” “Do you need anything?” or “How can I help?” Please know you are greatly appreciated and loved. The words needed to express our gratitude have yet to be created. You are the pillar of strength, knowledge and love from which we as patients depend upon. Especially on those days when our worst pain has invaded every part of our body to the point that it hurts to even pray for relief. On those days, you are our spirit.

— Thank you, with love, from a grateful patient

Originally published: September 29, 2020
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