I knew from the start of my relationship with Bob that Alzheimer’s was in his family. He was terrified he would get it too. His mother and her two sisters died tied to chairs in a nursing home years before I even met him, years before more compassionate care giving techniques were employed.
When we first suspected the disease was coming to haunt us I did everything I could to fight it. I gave Bob great quantities of supplements geared for the brain (phosphatidyl serine, ginko, barcopa, alpha lipoic acid, fish oil, vitamins B, C and E), we exercised, we continued to study Indonesian, and I tried to get him interested in crossword puzzles, but never succeeded. ( In later years Bob's doctor said he suspected Bob's slow progression into the disease was helped by these tactics.)
After four years of symptoms an American doctor unwisely told us, “ Bob is just not trying hard enough to remember things.” This seemed to mirror how I felt (before I knew better) because the disease progresses in a way that the person loses their short term memory slowly over time - not over night. I encouraged him to give more effort, not realizing he couldn't help these lapses. I was scared.
It was my nonacceptance that made the first years more difficult for us than they needed to be. I thought, “If I just fight hard enough, if Bob just tries more diligently, then we can over come this.” It became a battle - flip flopping back and forth between accepting this is our life now, and continuing in denial - until one day I exhaled and breathed in this new normal. Denial had disappeared.
|"Breaking Free" Pastel by Susan Tereba|
I now see my impatience with Bob as my struggle to accept that this is what our beautiful life had become. Acceptance didn't cure grief but it made taking care of him gentler. I no longer engaged in a losing battle and with the freed up energy I moved on to just doing the best I could for him - keeping him as engaged and as anxiety free as possible. It felt like we moved into a new stage of Alz World.
There is no magic way to acceptance - the way has to find us. But being open to it's possibility allows it to take root and untangle our resistance.