I’ve Been Asked to Give a Speech and I am Wondering How to Say What I Need to Say..

I NEVER EXPECTED to be on a panel of expert speakers about dementia when my wife and I started her dark journey with the affliction. But so I am.

I don’t claim to be an expert and the person who asked me to speak most likely does not consider me one, compared with others who will present virtually over the weekend. Rather, I am the everyday voice of experience.

The event, the Stronger Together Summit, is aimed at providing caregivers and families with various sorts of support and understanding. My topic on a Sunday afternoon will be “When the One You Love Changes.” 

I feel challenged. How do I talk about change when it is all downhill and make it sound helpful? There is, quite literally, nothing at all a caregiver can do as a loved one goes down dementia’s dungeon stairs from light to dark. 

My task will be to help people understand how to cope with it, because there will come a time when it seems there is change almost daily and you see and feel the very essence of your loved one’s soul going somewhere you never can reach. 

I admit that to a large degree my presentation will be telling people what do to, but also qualifying much of it with “do as I say, not as I am doing and have done.” 

That is a key learning I have picked up on this journey. No amount of advice will prepare you for the sense of loss, your own sense of guilt for feeling much of your life has gone away and, yes, more guilt that you long for a life of your own again.

I visit my wife every evening. I also go down during the day two or three times a week. Friends once upon a time would ask me out, but it always was in the evening, and I would decline and now they no longer ask. I understand. But at times I long for their company, for a night of beverages and laughs at one of the Gay Street bars, maybe sitting outside on a summer night; or going to one of the picnic-concerts at Marshall Park just up the street from my apartment.

It is all my choice. I decided long ago I would be with her as she has been with me for 58 years. I decided, when we began this journey, that I was not going to stand by her grave and wish I had spent more time with her. I have gotten away a bit, two or three trips for work and one camping trip out west. But otherwise, I have chosen to be by her side.

I have witnessed all the changes, mourning each one, feeling loss but at the same time glad I could be there to help her brush her teeth, get her ready for bed and tuck her in all snug and safe and leave her with a nightly kiss and hug.

I am trying to sort through these past two or three years and find a way to talk about all the changes, the losses, in a way that will give others, if not hope, at least understanding. I also know, that like a lot of serious topics I have spoken on, I will need to find ways to inject humor and a smile. Maybe even a laugh. We shall see….

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].