Caregiving Lessons from Diane
I learned that once a major disease or illness invades your home and family, the world dramatically changes. Normal routines and everyday schedules are often severely disrupted and change abruptly.
Instead of getting up and heading off to work, or doing the laundry on your normal laundry day, life becomes a sea of doctor appointments and tests and procedures that you now must accommodate on someone else’s schedule.
The whole realm of conversations surrounding diagnosis and treatment options can introduce an entirely new and unknown set of terms and vocabulary requiring a medical dictionary or at least an internet “Dr. Google” search just to understand what is being said.
You are encouraged to ask questions, but you can hardly absorb or understand what you are being told, let alone think clearly long enough to form a coherent question.
The scheduling of required medical appointments on top of just the minimal normal life requirements like school schedules, daily employment, trips to the grocery store, and meal preparation require a heroic effort in terms of time, emotions, and energy.
The emotional drain of caregiving adds to the exhaustion of the physical tasks that must be performed and the caregiver can quickly become overwhelmed.
In between rushing to appointments and making sure the rest of the house maintains some kind of normality, there’s the waiting.
Lots and lots of waiting often filled with uncertainty, anxiety, and dread.
When a terminal illness comes to a family, the world begins to shrink a little with the progression of the illness. Relationships change. Time seems to alternate between a slow crawl and accelerating to dizzying speeds. The things that once were once of great interest no longer matter.
Future plans for vacations are replaced with thoughts of future treatments and outcomes. Shared dreams often break apart or fade under the weight of just making it through the week or the day to get to the next round of treatments.
Things that happen on the other side of the world or in politics no longer impact the world of the patient.
Some patients can remain engaged and mentally active with the things they have always enjoyed. For others, the world changes from everything they used to be interested into the next immediate need such as when will the nurse come or how much longer until the next pill.
Their world shrinks from the life and activities once enjoyed to what happens within the walls of the home or even within the room in which they are confined.
The caregiver, under tremendous stress, often puts their life on hold, doing nothing for themselves and everything for their loved ones. They are facing their own fears and anxiety and often carry the weight of their loved one’s fear and anxiety as well.
Caregivers need help and sometimes, they don’t even realize how very much they need the help. They are so caught up and focused on doing for their loved ones that nothing else matters, including taking care of themselves.
Our goal is to offer help and hope to caregivers in a number of different ways. We have caregiver support groups for those who have a family member living in the early stages of Alzheimer's or dementia.
Check Our Workshops on a Variety of Caregiving Topics
Learn More About Our Alzheimer's and Dementia Groups
Please reach out to us if you have questions about anything you see on our website or maybe about something you don’t see on the website or if you just want to say hello.