Women are at the epicenter of the Alzheimer's crisis.

That's why we must be at the heart of solution. - Maria Shriver

Building a Network When You Feel Lost in the Woods

 

By Sara Pines | Caregiving

When you’re lost in the woods, the best thing to find is a friend who knows where the path is, knows where the clearings are, knows how to build a fire to keep you warm, how to forage for food, can take your hand and say, “Let me show you the way.”

The same is true when someone you love is struggling with dementia or Alzheimer’s disease. I lost my dad four years ago after a nearly decade-long emotionally agonizing descent into dementia. Now, my mom is midway through her own journey with Alzheimer’s. They are different but the same.

Having been down the path once, makes this experience not less fraught, but at least a little less scary.

What helped me out the first time was making new friends and finding experts that had been there before. We’re all wandering around in our own neck of the woods, but they can help you find your way to a clearing where you can take a breath, re-assess, find your own path and not lose your own mind or way in the process.

The first and most important step I took for myself was to join a support group. It was a lifeline for me.  There, every two weeks, I could start in the middle of the conversation with people who could relate to what I was going through. I could cry, ask questions, listen, get advice or just a knowing nod or a warm hug. After my dad couldn’t talk anymore, didn’t recognize me, he forgot how to eat. He had to be fed mashed up food, like a baby. I happened to visit him in the nursing home one day at lunch time and gamely said, “Oh, I’ll feed him, no problem.”  It was one of the most heart-breaking mealtimes of my life – this man who loved to travel to Italy to eat and drink and make merry, had no idea what was going on, didn’t know what to do with solid food in his mouth.  Now he had to be coaxed to swallow mashed potatoes. But the next Thursday, when I described the scene to my support group, they weren’t shocked or uncomfortable with the story. They didn’t recoil at my tears. They wanted to hear, they wanted to know, how did I feel?  What was he like when he wasn’t sick? It was a safe place to fall apart.

Four years later, I still see some of my friends from the group.  We’ve all lost a parent to dementia now, we’re all in that club, but we’ve been through it together. We are each other’s silver linings to that dark experience. We have each other. We are bonded and we can celebrate the good times and soften the blows of the bad times for each other and would not have that if not for the disease that brought us together.

Another pathfinder for me was our family’s elder care lawyer. He also took my tears in stride but, in addition, gave us valuable guidance, insight and expertise on how to navigate the piles of paperwork when you are caring for and paying for a loved one with a long-term, debilitating and ultimately terminal disease.  And now, he’s doing it again as my mom heads down her own path. The fact that he knows the way because he’s been there before takes the panic out of getting lost in the complicated forest of emotions and practical decisions that go along with the disease.

 

And finally, my parent’s doctor who specializes in geriatrics, was also a reassuring voice in the wilderness. He’s seen it all. These diseases have no standard trajectory. Every painful path is different, but at least he could tell us when we hit a milestone, what the future might look like, how long a path we could be facing. There are no easy answers, but his knowledge and understanding were a warm blanket on cold days.

No one wants to step into those dark woods. You don’t do it willingly. But while connecting with people who know the way through and can take your hand on the journey doesn’t necessarily shorten the trip, it makes it easier to make your way and find your light at the end of the path. When you don’t know which way to turn, find someone who’s been there before and can tell you, I’ve been there, I’ve done that, walk with me.

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