How are the Terms Care Partner and Caregiver Different?
It is common to find the use of these two terms within the Parkinson’s disease community. However, they are rarely defined. It occurred to me to take time to show, in my opinion, how these terms are different.
What is a care partner?
This term denotes an agreement between the person with a chronic condition and their loved one to be partners in care as best as they can. To help each other with health, wellness, and caring for each other. To do as long as you can, while you can. This would be discussed as part of your life and commitment to each other.
Agree to be open and honest with each other in how we are doing. No guilt, no holding issues back. Be prepared to ask each other questions, “How are you doing? Are you feeling OK? What do you need?” Open and honest communication is a key part of being successful care partners! Listening and asking questions ahead of time, without provocation, can have big benefits.
Not only would couples and committed partners have this conversation but also family members and friends who are part of the caring process. Everyone will need care at some point so, it is really best to have this conversation sooner rather than later.
What is a caregiver?
My definition of a caregiver is giving care, either in a paid or unpaid capacity, with compassion and nurturing. There is also an acknowledgement of care and if possible, a level of acceptance for care. It is good to discuss and have agreement from the person receiving care and those providing care, if possible. Moving to this phase can happen at any time.
There are those who may realize that they are not caregivers and that is OK! It is difficult to realize in the early stages of caregiving just how one will respond to these new responsibilities and needs. Just like any challenge, we really don’t know how we will handle the challenge until we are immersed in the situation.
The level of care may and most likely will change over time. Be on the lookout for changes! Everyone who is a part of the care team should be watching for these changes, no matter how subtle. Keeping open communication with during this time will be extremely helpful.
There will be challenges for care partners & caregivers
It would be naive of me to say that everyone’s journey in care will be easy, smooth, and a wonderful experience. We will all face some sort of challenge, small or large, in our caring journey. What I hope for all of us is that we have knowledge, support, and compassion to cope, as best we can, with any care challenge we may face.
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to PD?