In the past two weeks, I have run across four new families who are facing the new diagnosis of dementia or Alzheimer disease. Most have been noticing symptoms for a while, but the symptoms finally have gotten bad enough to seek a phyisician’s opinion. The Diagnosis. Now what?
Some people wonder what’s the point of getting a diagnosis? There’s not a cure anyway. But, having a diagnosis atleast let’s you know what you are dealing with as a new caregiver. Also, the patient usually is aware that something is happening. Knowing the diagnosis is the beginning of getting the right tools to cope.
When we first heard the diagnosis we were in shock. There were no words said. Just silence. Soon, the overwhelming emotions began swirl in unpredictable patterns; intertwining panic, fear, anger, sadness and a sense of helplessness. At the age of 51, Jerry was declared 100% disabled in a matter of weeks. He was put on short term, then long term disability and life as we had known it...ended. Step by step we began to pick up the pieces and build a new and different life.
I vowed to be with Jerry until the end. Yet, a fear of the future kept entering my thoughts....”what if I can’t do this?” “this could be for twenty years.” “he might be in a nursing home.” I had to discipline myself not to worry about things that may never happen. We lived to the fullest and took each day one at a time. Carpe Diem!
I can think of two things that needed to happen right away. Simplifying and Securing. Simplify the surrounding environment. Secure the finances. Personally, I like to tackle things head on. Knowing the impending cost of this disease prompted me to sell our family home and become debt free. We moved into an adorable little cottage type house that was perfect for the two of us. An elder care attorney set up a healthcare power of attorney so I could handle Jerry’s affairs. Finances, insurance policies, properties and wills needed to be squared away, so that I could focus my attention on caring for him.
Simplifying. The downsizing was the first thing we simplified. Smaller house. Less upkeep. No mortgage. We purged everything we didn’t need anymore. Material things, old clothes, and filed paperwork from the last century! The only things that we kept were functional and personal treasures. Ah....it felt so good. Next was simplifying expectations. We still loved to go out. Now, however, we went to restaurants when they weren’t crowded. We went to movies earlier. We walked the mall and stopped for coffee early in the morning. We traveled extensively. We still went to church, however, the crowds were too hectic, so we entered in the back entrance and slipped in the front of the sanctuary. Anything you can do to keep active, yet simplify the chaos will enable you to enjoy each other longer.