THE DEMENTIA JOURNEY has ended, in a physical sense, but in a literal sense I don’t know that it ever will. It will stay with me in my mind. It may fade but it will always be there.
I plan to keep this blog going for a while as I explore the aftermath of losing someone I have loved and shared with since we met on a chill November morning in 1967.
I first want to thank everyone who has reached out with thoughts, cards and kind words. I haven’t been able to thank each of you personally, but each touch has meant so much to me and by extension to Seth and Andi.
I also want to answer a question.
“How are you doing?”
Before Connie left this past Monday morning I had read a blog by a woman who didn’t much like that question. She felt like she had to give a positive answer as opposed to just unloading with how she really felt. I came away thinking she had some resentment for people who asked a question without an easy answer.
I don’t feel that way. The obvious answer would be “well, I feel like my world has been blown up and pieces lost and it never will be put back together.”
I suspect everyone who has suffered loss has felt that way but that’s an answer reserved for family and maybe a select few I can let my emotions out with.
But the question itself? I take it as a sign of caring. It’s awkward approaching someone who has just lost a loved one. What to say? We all struggle with it, myself including. So, we do the obvious – we ask “how are you doing?” knowing we probably aren’t going to get the real answer.
But, since one of the main goals of this blog is to share in a way that may help others, I will tell you how I am feeling and if it’s useful, you can file it away.
First, dementia has no blessings but, in our case, if it had one it is that Connie went into memory care on Jan. 24, 2024. From that day on I have lived alone. I stayed in our two-bedroom apartment in Chestnut Square in West Chester PA for a couple of months and then down-sized into a one-bedroom unit. Connie never lived in this unit. Just last week I had a painter in and I’ve taken what I’d lived in for close to two years and redone it. In a way, it’s a new beginning, albeit a lonely one.
In that sense I am doing fine. I have been living alone for more than two years. It’s not like Connie was in bed beside me, in the other recliner in front of the TV, and then suddenly she wasn’t. I’ve got the living-alone thing down pat.
I’m also doing OK in that I have family and friends close. We decided not to have a service but friends here in Chestnut Square said they wanted a chance to remember Connie so they are going to hold one. Other friends who don’t live here have said they want to attend. I have been surrounded by caring and it has meant the world to me.
So, if you have suffered a loss, or have one in the offing, my experience says don’t shut yourself off. Let friends help you.
BUT, I ALSO am not doing OK. I have moments where it hits me that Connie is not in this world anymore. These last two years have been a long going away. Dementia is called “the long good-bye” for a reason. But even after she no longer could speak she would squeeze my hand and let me know she knew I was there and that continued until just before she drew her last breath.
When these moments hit, I tear up and have trouble talking and I am fine with that. I came to realize when I lost friends, my parents, that loss creates a huge hole in your soul. At first it seems the only thing coming through that hole is grief, reminders of someone gone. But over time I’ve found that the hole grows smaller and one day you realize that what is coming through are the good memories and you smile. I know that day is going to come with Connie.
The other struggle is that with the loss of Connie came a loss of routine, of purpose. For more than two years I drove to Barclay Friends, a short seven blocks from my apartment. Sometimes I’d go down and we’d take walks or go for a drive and when she couldn’t do that anymore, we’d sit. In the evenings I would go down and we’d watch TV and talk, just like we did before dementia hit.
I am not making those trips now. I realize just how much of my life was wrapped up in not just helping care for Connie but being in her loving presence. Now I have to find new routines. I will, but I also know not to rush it.
I will look for volunteer opportunities, I will travel, I will explore new hobbies. I will start saying “yes” to invites from family and friends because now I can say “yes.”
Our grief is our own and how we choose to live with it is unique to us. I am not going to presume to give a lot of advice, but I will toss out some observations as I travel this new road. If they are helpful, to you great. If they don’t work for you, also good.
At any rate, a repeat of the thanks given above to each and every one of you. I will be popping in from time to time.
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. He also writes the blog stuffonmymind.blog. Semi-retired, he lives in West Chester, PA. He can be reached at [email protected].