What people living with loved ones with dementia really need: Giving grace

Again today, I’d like to talk to the people out there who are NOT on the front lines dealing with someone with Alzheimer’s. And I invite those of you who are to feel free to share this with those around you.

Alzheimer’s is isolating, both for the person who has the disease and for the loved ones on the front line caring for them. So, what can those on the “outside” do to support them? I had many people ask what my dad needed. I’ve thought a lot about that over the years.

Here are a few more things I’ve gleaned from my personal experience.

Mom, like so many with Alzheimer’s, was a consummate actress. In social settings, she was often terrific and appeared to others as if nothing were wrong with her. I know many people thought my dad, brother and I were crazy for saying anything was amiss when they saw her.

I also know after that expenditure of energy for Mom there was hell to pay for a day or so afterwards. It was much like a child who’s been good at school all day, and then falls apart at home. Mom worked so hard to appear together; that is very typical of someone with dementia.

It can be like seeing photos of someone on social media. That is not the entire picture. You are seeing one shining moment.

People judged and told me how I was ruining her; there were plenty of naysayers. I saw the eye rolls and heard the disapproving clucks under people’s breath. But this was about survival. Alicia and I slept like angels for those months, as we suffered through long days of her screaming with colic.  She is now a healthy, well-adjusted young lady, and I kept my sanity.  So, I’m going to call that a win.

Keep in mind these people caring for loved ones with dementia are hurting and often exhausted. They are doing the best they can. It is easy to sit on the sidelines and judge whether someone is taking their person with dementia out in public enough or making them available enough to others. But those on the outside of that house do not understand the cost.

Sure, at times I wanted Dad to bring Mom to an event for my daughter or something else. But I also understood what it cost him. While I was sometimes disappointed, I never judged. And I tried hard to adjust our visits and the things we did with them to cause the least disruption and disturbance.

The best thing to offer is comfort and care. I believe it’s critical to let these caregivers know you care and remember them.

A lovely woman in our church back home frequently sent cards to Mom and Dad. Pretty cards saying hi, letting them know she cared.

It was so simple, but so profound. Dad mentioned her cards so many times. She had thrown him a line in a very turbulent time. He and I will both be forever grateful for that. Similarly, I had a dear friend from back home who constantly sent me cards.  Those meant the world to me, a buoy in a stormy sea.

In elementary school, my daughter’s amazing principal taught the Covey Habits, including “seek first to understand.” That principle works well here. Give grace. And know that we all are doing the very best we can.