Suffering – Endurance – Character – Hope! What do these four words have to do with Caregivers?
This past weekend, a friend made reference to these words, and they struck me as the journey that dementia caregivers are on as they struggle through the years. Unless you have been a caregiver, and especially a dementia caregiver, you may not truly understand their meaning.
Suffering is an ongoing way of life for dementia caregivers. From the moment you are suspicious that something is wrong, to receiving the diagnosis – or several misdiagnoses – to living it day to day knowing that your loved one has a terminal disease and there is little that can be done. It can’t be reversed! It can’t be operated on and removed! It can’t be prevented!
The only choice you have is learning how to endure the cards you have been dealt. And that can become a more positive approach as you learn more about the specific dementia disease your loved one has. Education is key to survival. Learning what to expect and learning how to communicate doesn’t make the task easy, but it does make it easier to manage. Relying on organizations like the Alzheimer’s Association or the Association for Frontotemporal Degeneration or the Parkinson’s Foundation, etc. will offer you the tools you need to manage your caregiving responsibilities.
Which leads to building character. I have been facilitating dementia support groups for many, many years. It always amazes me to see people at the beginning stages of a loved one’s disease process and where they are in two or three years. They are still experiencing Kubler-Ross’ stages of grief (Denial, Anger, Bargaining, Depression and Acceptance), but they are handling those stages in a different way. And they are handling it in a different way because they have participated in a support group. They have educated themselves as to what their reality is and will be in the future. They have found and developed a support team… a team who will listen and provide the necessary support for them to survive. And they have discovered that they are not alone on this journey but are also able to share their learnings with those new to a diagnosis.
Hope – how can anyone have hope for the future when your family has experienced such devastation? Hope comes in the research that is being done to have medications available and biomarkers to help identify what type of dementia someone has. Hope comes from the clinical trials that are being conducted with patients and healthy people. Hope comes from knowing we have made great strides in the last 10-15 years and that someday soon, we will have the cure we need to eliminate Alzheimer’s disease and the other dementias.
The dementia journey is a long, hard, devastating journey. It’s never easy. But caregivers do learn how to cope with their loved one’s disease and do the very best they can on any given day. After all, that’s all that can be expected. To do one’s best at any one moment in time.