This article originally was published Feb. 3, 2015, on Healthline Contributors, which no longer is live. Reprinted here with permission. My dad died less than seven months after this was written.
By David Heitz
When dad first entered the memory care facility two years ago come July, I remember having a conversation with the director that always has stuck with me.
She explained then that when a parent has a progressive illness with dementia, we lose them twice. We lose them when they’re no longer able to communicate, and then of course we lose them when they die.
I knew she was speaking truth when she told me this, but I sort of shrugged it off as “after-school special talk.” That’s my term for the things people tell you about losing a loved one with dementia that, yeah, you’ve heard it all before, you hope it doesn’t apply in your case, and sometimes it’s just best to mind your own business.
But some things, like that piece of advice she gave me, are worth listening to. Other words of wisdom that have proven true? “Join a support group, you’ll feel better” and “you really need to remember to take care of yourself.”
Even though I’ve really been down in the dumps as it relates to the progression of dad’s illness, I wanted to write a column today talking about good memories with dad. I’m hoping it makes me feel better, because I really do feel like I’ve already lost dad that first time, as the director of dad’s facility predicted. Writing this column each month helps me come to terms with it all, and for that I am so grateful.
Dad still talks now and then, but very little, and nothing makes any sense at all. Soon I know even these few sentences per visit will become cherished memories.
Here’s another important piece of advice: When a loved one goes into a facility, there’s no reason at all to stop making memories.
Just last week, dad pointed to a row of wheelchairs next to the television in the great room of his facility and said, “Take a picture of all those hot rods lined up over there.” That one went over pretty well on Facebook.
Having Fun While Making Fun of Milan
So last night I began thinking about dad and special moments with him that stick out. They always were on Saturdays. I think every Saturday until the end of my days I’ll think about my dad.
When I was very young, we would go on Saturday mornings to visit one of his two best friends, Jack Long or Dave Guldenzopf. They both lived in the nearby village of Milan, and going to Milan always excited me for whatever reason.
Even though Milan borders my town of Rock Island, Ill., it always seemed like another world to me. You have to cross two little bridges over the Rock River to get there from Rock Island. When you cross the bridge, there’s a power dam with a little waterfall off to your left. To a little kid it’s just the neatest thing ever to look at the waterfall when you’re crossing the Milan bridges.
Back in those days, when you entered the village of Milan the first thing you’d see was a Western store with a large, spinning horse atop its sign. There were lots of seedy looking bars downtown, too. Honestly, to me it looked like the set of a Western at Universal Studios Hollywood.
Dad liked to make fun of Milan. It’s terrible, but I have good memories of hearing dad’s Milan jokes. Even until recently, we would giggle when he would talk about Milan.
(Disclaimer: Milan has since grown up and boasts some of the most beautiful residential neighborhoods in our region: a stunning city hall, robust economic growth and lots of other wonderful things! So my apologies to Milan!)
Dad always was in a good mood when we would visit his friends in Milan. It seemed like a reprieve from work and married life for him, at least for a morning or an afternoon.
Honestly, he seemed like a different person during those Saturday trips to Milan, and looking back I can only imagine home life was as miserable for him as it was for the rest of us. Other than that, dad seldom went anywhere. Keep in mind he received disability retirement at 43, so he led a pretty boring life.
Sadly, Jack and Dave both passed quite a long time ago. Dad hasn’t been able to visit either of them for many years.
Prior to taking me with him to see Jack or Dave on a Saturday, I know he used to spend Saturdays visiting his dad. I don’t remember my Grandpa Raymond T. Heitz the first (now there are four, maybe five, who knows) because I was only 3 when he died.
But my dad, who like so many people with dementia like to tell you the same thing 10 million times over, spoke many times through the years about enjoying his Saturday visits with his dad. Those were special memories for him.
Free Lunches at Coney Island and Mr. Quick’s
Saturdays weren’t just about seeing Jack or Dave. Usually it meant a free lunch, too.
My dad was a penny-pincher, and seldom did we eat out unless my mother insisted on it (and who am I kidding? she did insist on it quite a bit). So when on a Saturday we would go to Mr. Quick’s or Harold’s Coney Island, it was a huge treat.
I remember two things about Mr. Quick’s and Harold’s Coney Island. Mr. Quick’s had a tile mosaic counter that I thought was just so, so cool. And Harold’s Coney Island? I remember Harold, the little old guy who ran the place (not super old, but older than my dad at the time). He was very quiet and very regular guy-ish. No matter what anyone at the counter would say, he’d just sort of smile and nod, then go back to cooking the hot dogs. The guy really never said much, but I thought he was famous. His name was on the sign outside Coney Island, after all!
And sometimes around here when people talk, smiling and nodding is simply a good idea. He was a smart man.
Fast-forward to before dad moved into the facility. I had the pleasure of making memories with him for one year in this house, the house he and my mother bought together in 1963 (and now I own the house). She had him evicted from the home in 1984 (Order of Protection) prior to divorcing him the second time. I moved out shortly thereafter, moving in with a cousin and paying room and board as a high school senior on my part-time newspaper salary.
When mom died in 1995, neither dad nor I had an interest in buying the house. My older brother already had his own house by then. So we sold it.
And in what undoubtedly has been labeled a dementia twist by some, dad found out it was for sale in 2012 and bought it again. The year we spent together here was special beyond words.
Facility Tales: The Good, the Bad, and the Ugly
Back to when the time comes for a nursing home or assisted living. The best advice I can give anyone is to NOT stop making memories once they go in there. It only will make life unpleasant for both of you.
For starters, let me just tell you surprise visits are a necessary part of being your loved one’s advocate. You need to know what’s going on, and sometimes you may not always be thrilled with what you see. But it can’t be addressed if you don’t know it’s happening.
But far more importantly, you only are cheating yourself by staying away from a loved one when things begin to become uncomfortable. Going along with the strange things they say and maintaining as much of a sense of normalcy as possible, I think, is key to getting through this – for both the loved one and the patient.
If you’ve got a sense of humor, facilities are just plain fun at times. I wrote a little bit about that in my first column about dad, “My Dad: Class Clown of His Memory Care Community.”
Believe me, I could write a book: “Facility Tales – The Good, the Bad, and the Ugly.” And I still might. But for the most part, the controlled environment of assisted living allows for some tender moments during the sunset of life that I do not believe otherwise would be possible due to the stress of caregiving.
So when they go into the memory care facility, keep making memories. That’s the whole point.