The bless­ing in­side my sis­ter’s Alzheimer’s dis­ease

The Washington Post Sunday - - SUNDAY OPINION - BY JEN­NIFER PALMIERI

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 Amer­i­cans 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. The writer served as White House com­mu­ni­ca­tions di­rec­tor from 2013 to 2015 and was com­mu­ni­ca­tions di­rec­tor for Hil­lary Clin­ton’s 2016 pres­i­den­tial cam­paign.

COUR­TESY OF JEN­NIFER PALMIERI

The writer’s sis­ter Dana Drago.

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