Until about a year ago, I thought the worst thing that could happen to a family member of a dementia patient was not being recognized. Now, I wouldn’t mind if my mother didn’t recognize me if it meant she is no longer thinking at all.

Mom knows enough to not want to be where she is, a skilled nursing facility in hometown Joliet. It is excruciating to hear her plead, “Take me out of here” and “I want to live with you.” 

No matter how long a visit lasts, she begs us not to go. No matter how often we visit, it’s not enough. Rick, who lives the closest, is there most days for an hour or two. Patty comes down from Milwaukee on Saturdays or Sundays. Nancy makes a one-day round-trip from Indianapolis every two or three weeks. I recently upped my visits to every week from every two. The nursing home’s activity director puts Mom on a Zoom call with us three days a week.

We try to tell Mom that she has to be in skilled nursing because she needs total care. We reassure her that she’s safe and well cared for at Our Lady of Angels. But you can’t use logic with a dementia patient. “I don’t understand” is her reply.

The only thing we can do is deal with our guilt and support one another. Our family isn’t good at sharing feelings, so I was glad to see Rick opening up in a text: “Mom is in a tearful way today. Keeps saying, ‘Please, please, please,’ doesn’t want to live here, says she wishes she could die. It’s hard.” 

Until not even three years ago, our family had been incredibly fortunate. Our parents were still living independently in their 90s. Dad’s death at 99 was relatively quick and pain-free.

Of course I wish my mother could also have had an easier end of life, but this experience is instilling or reinforcing worthwhile lessons, some broadly applicable, such as:

• Some things can’t be fixed. They have to be accepted.

• Guilt is understandable but isn’t helpful when nothing can be done to change the situation. None of us can take Mom home; we’re not skilled nurses. Guilt is lessened by knowing that we are still responsible for observing and advocating for Mom. We pressed for more to be done to control Mom’s pain and anxiety and to coax her to eat more, and changes were made. 

• Sensing the other’s needs improves communication. I used to respond to Mom’s “I’m scared” by asking why or reassuring her by saying, “You’re safe and well cared for. There’s no reason to be scared.” Now I try to validate her feelings and say, “Old age can be scary.” When I say that, she answers, “Yes, it can” instead of “I don’t understand.” I’m also challenged to think of ways to relate without words, like coloring together.

• My siblings and I need support, and the best place to get it is from the people who are having the same experience, one another, despite being unpracticed at sharing our feelings.

• We shouldn’t neglect our own needs. On six days of the week, I go on living my life.

The one lesson I don’t want to take is that old age is hell. It can be, but my dad’s wasn’t. None of us knows what we’re destined for. I don’t want to spoil the present by fearing the future.