Being a family caregiver means that you will feel the pain of the disease, along with your loved one. They will not be alone in their suffering and you will live with the disease too.
In this next series of blogs, I will be addressing some of the aspects that I experience as a caregiver for my husband, who lives with Parkinson’s.
I am a “family” caregiver which means I was never intending to be a caregiver at all, and yet it happened.
My Mom has “professional” caregivers who have spent their lives caregiving as their careers. They have trained for these jobs.
As a family caregiver there are many aspects of the job that I encounter that are different in nature from what professionals encounter. First off, I am emotionally tied up with my patient in ways professionals are not. I have been a massage therapist and I understand how one can care deeply about a client and also not be emotionally vulnerable the way one is with a family member. In fact, in their training professional caregivers are taught, much like massage therapists are taught, NOT to get too connected with clients.
As a family caregiver, all those precautions go out the window because one is already emotionally bound to the patient. I was married to Andy for 30 years before he was diagnosed with Parkinson’s. It was a few years more before he really needed caregiving. During those years we experienced the progression of his disease together. We shared losses and suffered giving up certain dreams together. Our long history and marriage gave us the ability to begin our caregiver/patient relationship as the team we’d become from falling in love, starting a business and raising children.
Being a family caregiver means that you will feel the pain of the disease, along with your loved one. They will not be alone in their suffering and you will live with the disease too.
It works the same way in a healthy relationship, when a woman gives birth. Her husband is also part of the experience and his life is also forever changed.
As a family caregiver, when you are told by doctors, friends and family to take care of yourself too, make time for your own needs to be met and give yourself a break sometimes, this advice needs to be much more than a bit of time away from your caregiving duties.
Recently, I learned that the simple feeling of being overwhelmed can be trauma.
I was told by my wise counselor that I’ve experienced compounded, complicated grief. Yup.
What is to be done when one is a family caregiver to a loved one? 75% of family caregivers die before their patients. It means that family caregiver needs are not being fulfilled.
There are remedies and healing protocols that help. Stay tuned.
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