by Eric Linn
Looking back to our journey with Alzheimer’s ….
Our mother was finally diagnosed with Alzheimer’s at the very young of age 58. We struggled, as so many families do, to get her diagnosis and then to accept it. At the time, we were directed to different doctors, specialists and a neurologist, but when she was finally diagnosed we still were never given the true facts and what to prepare for, causing so much extra stress and pain within our family. You try so hard to keep your loved one living normally and trying to allow them to enjoy all that they have earned, including their driving privileges, home, family, hobbies and independence. No matter how hard you fight, the disease begins to take over and one’s life becomes very simplified with little in the way of high points for those living with dementia.
The disease slowly robs us of our loved one and can, if allowed, creep into our families, “the silent victims”, causing great havoc. This can bring discord among siblings, spouses, in-laws, and children in any combination. Our mother could always sense it if we were not getting along, which I believe affected her health and wellbeing immediately as well as our own. If you are able to accept help and find a navigator to support you and your family it is truly a blessing. We cannot stop this monster, (as I like to call it) but we must find ways to care for our loved ones and ourselves. For our family, when we finally all agreed to our mother’s diagnosis and her care plan, we then were able to make difficult decisions together. No decision was easy, however learning to separate our wants and desires from what was reality was essential and planning ahead brought acceptance and less panic when mom’s condition changed. Even with less panic, each worsening condition still was very challenging. Life was put on hold often, and with no plan or support from others it would have been much worse.
The most trusted and helpful people for me as the main caregiver and decision maker were those who had experienced early onset dementia with their loved one and had truly gone through or were going through what we were experiencing. We would help each other through many difficult times often just validating and listening, offering simple assurance that I was doing the right thing or making the best decision at the time. Healing for our family after our mother’s death has come through advocacy and supporting others living their own family dementia story. We pray for those living with dementia and their caregivers.
“I’m still Irene’s Son”