My sister Dana was brilliant, beautiful, full of positive energy, a force of nature. Photo / Washington Post
Last month my sister passed away from early-onset Alzheimer's. She was 58 and probably had the disease for well over a decade.
Awful. Anyone I share this news with has a visible physical reaction to it. They shudder. Take a deep breath. It's the disease everyone fears. Alzheimer's doesn't just kill you, they are thinking, it robs you of the person you are long before it has the mercy to kill you.
Every day, more people receive the devastating news that someone in their family has this affliction. For now, there is not a lot of hope for recovery. It can make you envious of cancer patients; their families get to have hope. Having come through this experience with my sister, I am afraid that I can't offer these new Alzheimer's families hope for a recovery. But I do hope that by relaying the story of my sister's journey, I can offer them some peace.
My sister Dana was brilliant, beautiful, full of positive energy, a force of nature. She was not an easy person. She was driven and successful, and, as the disease progressed unbeknown to all of us, it became harder to connect with her. Ironically, that began to change once she got the diagnosis.
When she called each of us with the news, she already had it all figured out. We were all to understand that, really, she saw the diagnosis as a blessing. It was going to allow her to retire early. It would motivate our family to spend time together we would not have otherwise done. It would shorten her life, but she would make sure the days she had left were of the highest quality.
For my part, I had a hard time reconciling her optimistic attitude with the knowledge there was no hope for recovery. I envied those cancer patients. But I eventually learned one of the gifts that came with this illness: It strips away your notions of how life is supposed to be and forces you to reassess what it means for a moment, a day, a life to have value.
Equipped with a more realistic set of expectations, I saw that families fighting cancer faced their own torment. Debilitating treatments, anxiety over whether you are pursuing the right treatment, unrealistic hopes and crushing disappointments. It could ruin whatever time the person has left. My family was spared that particular kind of torment.
Dana was true to her word about how she was going to spend her time. In the end, she had far fewer days than we expected, but she brought our family together in ways we never would have enjoyed had she not been ill, and in ways we could not have enjoyed if she was in endless treatments. That was a blessing.
I should be clear that my sister did not give up her own hope of recovering from Alzheimer's. Early on, she spoke of changes she had to make in her life until "they" found a cure for "this disease." I admired her resolute refusal to see the disease as part of herself. She would not let it define her.
For years she vigilantly fought her decline and sought to protect her independence. Eventually she ended up in hospice. But she needn't have worried that leaving her home meant losing herself. It was in that hospice room that I saw her refined - not reduced but refined - to her most essential self, a person full of grace and love. Of all the moments in my life I had with my big sister, the ones with the most value, the most intimacy, the most joy, were the ones I spent simply holding her hand in her hospice room. No distractions, no expectations or pressures, a time to simply be present, to simply be sisters. My other two sisters, Dana's best friend and I would sit with Dana and repeat her own mantra back to her - all is well. And it was.
Even after she largely lost the ability to speak, I could look into her eyes and see she was still there. She was still Dana. I would tell her so. "I see you. I see you in there." She would nod in response. Once or twice, I would even get a smile. Those were days of true value.
I wish no other family ever had to lose someone to "this disease." But for all those on this path, please know that it does not mean you must be robbed of your loved ones before they leave this earth. They are still there, and the time you spend with them can be a gift of grace you might otherwise never have known. My hope for you is that you get to share the heavenly peace and love our family was able to share with our sister while she was with us. It is a blessing.