June 26, 2013

The club I never wanted to join

When I first shared publicly my father has dementia, one comment stood out and has stuck with me. "All of us who have a loved one with dementia/Alzheimer’s are part of a club we never wanted to join."

I have heard it said dementia is much harder on the loved ones than the patient. That is so true. My dad is doing great. He loves where he lives. He has made friends. He is happy.

We are the ones who are struggling.

The staff at the facility told us it would take about a month for him to adjust. We were advised to limit visits at first. It would be hard on him and on us, and would likely result in his begging to come home. But eventually, they promised he would stop asking and settle in to his new life.

Everything has happened exactly as they described.

In many ways, he seems healthier than he has been in years. Which makes the situation that much more difficult to accept. There is no doubt his disease has progressed. But seeing him in the memory care facility, he seems so out of place.

There are people there in the advanced stages of dementia. He doesn't "fit" with them. Realizing he will someday is almost too much to bear.

There is a childlike quality to him now. There isn't the typical "role reversal" you read about. I'm not responsible for my father's care. But the traditional role he has played in my life has come to an end.

Visits with him are short. He doesn't have much to say. I try to take something along we can focus on. The latest photos and videos with SB. Her school or camp artwork. She tells him the stories of her life. He'll never remember what she says, but in those moments she has his full attention and feels his love.

He dotes on her, as he always has. It brings us all joy. And yet, for me there is so much sadness underneath the smiles.

My dad is still very much alive. Yet I find myself holding desperately to memories of how he once was. How we once were. I am grieving, but not in the "normal" sense.

I am working hard to continue to build memories for SB. We visit as often as we can. My recent pneumonia kept us away longer than I would have liked.

I feel an urgent need to keep their relationship strong for as long as possible. She will be unable to recall many of her best moments with him, because they happened when she was so young. The best gift I can give both of them is the opportunity to build memories - for her. And I will cherish them always, too.

I knew when I made this video for my dad's birthday. It wasn't just a present for him. I realized we didn't have much longer before we lost him to this disease. I made it for all of us, to help us remember. To celebrate and hold on to the special times and the remarkable relationship he has with SB.

I have a lifetime of memories with my dad. Incredible ones. Sure, there are photos and video capturing many of the good times. But there are years of moments stored in my mind. SB will not have that.

There's nothing I can do about it. I can't change what is. I'm part of a club now, one I never wanted to join. But I can make the best of the hand we have been dealt, and build the legacy for my father he deserves.

Because he never would have chosen to belong to this club either.

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