Waiting. What to say? How to wait on the death of the loved one doesn’t come with a handbook. Some tips maybe, a bit of advice but in the end, it’s you and how you choose to live out those days and hours.
WHEN I STARTED this blog one of the things I wanted to do was to share the experiences, the impacts that go along with having a loved one being in the clutches of dementia.
It came to me this week that death, when it comes, comes slowly and on its own terms and how that impacts a person is going to vary widely.
This past week I’ve wondered if I really have anything to share, any advice to give when it comes to that period between the last bit of real awareness and the death of the physical body. I found myself thinking it’s so unique I have nothing to say. So, like any journalist facing a deadline for a column, I will go ahead and spin that nothing into some words. For what they are worth.
Connie senses our presence. I am not sure she knows who is with her – me, our son, an aide, a nurse, but she knows when someone is at her bedside and she clutches at hands.
Her body is dying. I suppose I thought once she became almost comatose, quit accepting much food or water, it would wrap up pretty quickly. It hasn’t. I know, from a medical standpoint, a lot of that has to do with the reserves her body had when it went into the final decline. Connie has reserves. She is strong. I should say “was” because over the course of the last 10 days or so she has withered.
Today the hospice nurse said she would be gone by this coming weekend, although she said it could happen tomorrow. Everyone is different. And so, waiting is different.
For me waiting is not countless hours at the bedside. My son and I take turns but after an hour or two, I leave. I go down morning, noon, evening. I hold her hand, talk to her, sometimes just sit in the recliner and watch TV. I take in the sunrise and the sunset and all the flowering bushes and trees of April.
But, what about all those hours when you are not at bedside? How do you keep your sanity? For me, it’s been a mix of doing and pulling the covers up over my head.
I am having the apartment painted this week. I am having accent walls done – one wall a Southwest orange, the facing wall a softer orange-gold. I am doing it in the living room and bedroom. I having the small bathroom done over in a glowing yellow-gold. I am not sure why other than one day I woke up and realized I had a life after Connie to plan, whether it is one year or ten.
I am also redoing the furniture layout. After Connie moved into memory care and I downsized to this one-bedroom unit I just threw stuff in. Now I want to plan for relaxed living – create some open space in the small unit, unclutter. The painter is coming Friday, whether Connie is here or not.
I’ve started going back to the gym. I need to work my body. I have a short list of social activities and I am participating in them. I am working on the “stuff” that must be done when a life ends – communicating with a lawyer, financial advisors. I read and I watch TV. For me, all the British, New Zealand and Australian mysteries and shows on Acorn take me away.
I’m also looking at what I want to do for the rest of 2026 – sign up for some volunteer work, travel and see the country, and family and friends.
I think if I have one piece of advice for anyone going through this waiting it would be to find stimulation of some sort. Whatever floats your boat and gives your mind a brief respite from contemplating the inevitable.
I know one thing I have accepted that, for me at least, works. I no longer have the need to be at Connie’s side when she breathes her last. This is not a movie with family and angels hovering beside and above the body. Unless I move into her unit the odds of me being there at the end are slim. I have accepted that.
I suppose what this amounts to, in terms of advice, is that as you await the end don’t give yourself unfair responsibilities. Make peace with what you need to do to watch a loved one leave. Don’t spend a lot of time trying to do what you think everyone expects you to do. That includes this writer.
This is your waiting, your parting. Just take care of yourself in whatever way works for you. The waiting will end.
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 and his wife live in West Chester, PA. He can be reached at [email protected].
I recently read that caregivers who actively plan for life after, live much longer and better than those who do not. Some of us are like that by nature; others must be nudged.