Making Plans? Dementia doesn’t care about your plans

I had a lot on the plate for today, but now it looks like a nap is in order

I AM TIRED. I had a plan for today, but it didn’t come to pass. So it goes, lately, with Connie’s dementia.

We are moving into what I am going to call the “scattered” phase. It’s not a medical term but it’s how I think the world is a lot of days now.

Connie is entering, I think, the final phase of cognition. How long she will be in it before all goes dark, I have no idea. But now, she is having more and more trouble carrying on simply conversations. That’s a combination of the memory loss and speech aphasia common to Frontal Temporal Disorder. Our time together is becoming more and more silent, more and more of watching a TV screen instead of talking.

She’s started to show all the signs of serious anxiety and confusion, even some paranoia.

This morning she called me. I am on speed dial and each night when I tuck her in, I set her phone to the speed dial screen so it’s ready for her in the morning. This morning when I answered, she’d hung up. After a couple of tries I got her. She told me she needed more underwear. She is wearing absorbent underwear now because she can’t always get to the toilet. That is a common thing with dementia.

My plan? To get up, have coffee, read the papers, go to the Y then prepare for a business trip. My actions? I went down to the memory care unit to take a picture of the brand of underwear I had about because I couldn’t remember the exact type. Want to be amazed? Go stand in front of an adult diaper section and see how much stuff lines the shelves.

An aide stopped me to tell me that, as of 10 a.m., Connie had changed clothes three times. She felt her clothing was too tight, though it isn’t. The clothing she’d worn for maybe a half-hour was in her dirty clothes basket. So it goes. We talked. She said she didn’t care what staff or I said, everything was too tight. She said staff wouldn’t help her. Not totally true, but a bit. Staff can’t camp out in her room.

I WENT TO the drug store, but they only had one box left. Bought it, decided to get a few things at the grocery and found a smaller pack of her brand there so bought that. Came home…clock moving toward noon. Head ache. Tired. My own shortcomings – a bad back, lingering pain from a knee replacement acting up – reared up.

Noon, and exhausted. Maybe a nap but there is construction going on in the apartment courtyard, so….

Lesson. When your loved one goes into a care facility your day-to-day caregiving eases up. But it doesn’t stop. As dementia deepens, new demands are placed on you and you have to adjust. You come to realize, as I have, that all plans are tentative and subject to change at the ringing of the phone.

It is easy to get frustrated, angry. And I was all that this morning and more often than I like to think. But I have gotten good at stopping myself as anger builds and saying “this is not her fault. It is not my fault. It is the disease’s fault.”

Dementia does not just invade its primary victim. Sooner or later, it invades everyone who loves that person. It twists lives and changes them. Everyone will deal with this differently, and in their own way.

Just be prepared. 

Rich Heiland, has been a reporter, editor, publisher/general manager at daily papers in Texas, Pennsylvania, Illinois, Ohio and New Hampshire. He was part of a Pulitzer Prize-winning team at the Xenia Daily (OH) Daily Gazette, a National Newspaper Association Columnist of the Year. Since 1995 he has operated an international consulting, public speaking and training business specializing in customer service, general management, leadership and staff development with major corporations, organizations, and government. Semi-retired, he and his wife live in West Chester, PA. He can be reached at [email protected].