Alzheimer's blog

Caregiver finds a way to love and let go at same time

By Angela Lunde October 1, 2013

Transitions and uncertainty become the new normal for the Alzheimer's caregiver. But perhaps no transition is as monumental as when the person you love and have shared a life and home with moves to a care facility. The decision marks an irrefutable passage of a chapter in time.

We met Carol in the last blog post as she spoke about transitions and shared her story as a wife, and in more recent years, a caregiver to her husband, Alan. Here's more:

"Alan was having more incontinence episodes both during the day and night. He was beginning to wander outside. In the shower he often became frightened and then his knees would buckle and he would slowly collapse to the ground ... he was afraid to sit on the toilet. I was beginning to have trouble getting him to sit down in the car.

"When I got the call that there was a room available at the care facility, I cried for hours. I had already declined the opening twice before when the call came. But this time, I knew in my head it was time. Alan's needs were getting too difficult to manage at home, and yet, I was totally unprepared emotionally.

"I had a few weeks to process my decision. I thought he would get better care and felt that he would be safer in the care home I had selected. However, I couldn't suppress my feelings of guilt and sadness. I kept telling my adult kids that I needed a sign that I was making the right decision.

"The evening of the move our kids and I sat with Alan in the living room of his new home. One of the staff members said to Alan, "Let's go get ready for bed." He went with her without turning back to look at any of us. My daughter said, "Mom, that's your sign." It was the best sign I could have gotten!

"Alan's adjustment went smoothly. I soon realized that the home was a better place for him because he could live at his own pace and have more interaction with others. Undeniably, my lifestyle had become too much for Alan.

"As a caregiver, perhaps the hardest transition I've had with Alzheimer's is facing just how long and exhausting the journey is. And when Alan moved to a care facility, my role as a caregiver didn't abruptly end, it just changed.

"It's easy now to become complacent with where Alan is at in the disease because things have slowed down, so changes can catch me off guard. But I find that I do better once I've adjusted to the change — not that Alan gets better.

"Through it all, I could not have survived as well without the friends I've reached out to in my support network, or without our kids. Our kids live out of town and even though I do the caregiving for Alan, my kids do the caregiving for me. They let me know that they don't want to lose both parents from their dad's Alzheimer's."

I often say that when you've met one caregiver, you've met one caregiver — each of you walk the path and experience the journey in your own way. Carol's story is uniquely hers, but I know many of you identify with her in your own situation.

Carol's story is about anticipating what lies ahead, accepting what she can and can't control, advocating tirelessly on behalf of her husband, and continuously adjusting to her next new normal. Moreover, Carol's story is about loving and letting go at the same time.

"Life is not about waiting for the storm to pass. It's about learning to dance in the rain." — Anonymous

Oct. 01, 2013