One of my very dearest male friends (through amateur radio since 1997) is a married man named Ryan. He and his wife and I have broken bread together several times during our retirement years. I was never as close to his wife Bonnie as I was to him, but we weren't strangers.
Bonnie had a way about her. She was an avid reader, movie watcher, and water-color painter. She even taught others how to do water-color painting. She had an artistic flair that couldn't be denied, as well as a good-paying job that often kept them afloat. Ryan is a somewhat laid-back, passionate kind of guy. Bonnie, however, had a sharp-tongued sense of humor that often bordered on the sarcastic. (Okay...more than "often" perhaps.) Based on things that Ryan told me and his other radio buds, she came to be known as Hurricane Bonnie behind her back. (Once, years ago, I had a garage sale that Bonnie participated in. My daughter, after spending a day with Bonnie at the sale, said, "I just love Bonnie. She's such a bitch!" She meant it in the nicest way. Bonnie didn't hold back. She wasn't nasty. She wasn't profane. She was just...well...Bonnie. No nonsense. )
To be fair, ham radio is an overwhelmingly male hobby. Non-ham wives can be skeptical--even resistant--to the amount of time and dedication (and money) that their radio-smitten husbands expend on the hobby, to the degree that one could buy t-shirts at the annual radio convention that used to be held in Dayton, OH, that said, "My wife tells me if I transmit one more time, she's going to leave me. Over." Or "My wife told me that it's my radios or her. I'm sure going to miss that woman." A male radio operator once asked me how he could convince his wife to be as passionate about the hobby as I was. I had to tell him, "You probably can't. I don't have a spouse who could be jealous of the time and money that I spend on the hobby. You do. Women often just don't understand the attraction to radio. You'll just have to find a happy medium." Hurricane Bonnie was one of those women. She saw radio as a vacuum that sucked out their time and finances, and I'm sure there were other issues, but she hung in there.
Ryan told me once, even in the throes of wishing his life were different, "I would die for Bonnie. I would die without Bonnie." And now, many years later, his dedication to Hurricane Bonnie is being tested because the hurricane is now just a fog. Bonnie was diagnosed with Lewy Body Dementia a number of years ago and is a mere shadow of her former sarcastic self. I've broken bread with them several times after the diagnosis. Today marked the first time in a year or so that I joined them for a breakfast with other friends. I had heard from my neighbor that Bonnie wasn't doing well, but I was pleasantly surprised. It wasn't good, but it wasn't dire. Yet.
The first thing I asked Bonnie was if she remembered my name. She didn't. I told it to her, knowing she wouldn't remember it. Before the food came, she exhibited quite a bit of anxiety...hunger...thirst...who knows? When the food came, she wept over her behavior before it did. Ryan assured her that no one was judging. (What was to judge? I've often considered crying when I was hungry and my food wasn't coming fast enough!) When she got her food and desired drink, she said she was feeling better and devoured everything in front of her.
I am no expert on dementia of any kind, but I spent a number of years trying to help my sister get through my brother-in-law's Fronto-Temporal Degeneration years. I didn't really understand it all until late in the game, but God knows I tried. Sitting next to Bonnie this morning felt comfortable to me. I know her. I care about her. I care about her husband. The waitress knows them and understands. Nothing to fear there.
If I coughed, Bonnie patted my arm. If I asked her a question, she always answered. Once or twice, she said she loved me. (She did that to others, too.) At one point, she looked at me and said, "You're so pretty!" Look, folks: I'm not stupid. If even a demented person thinks I am pretty, it's going to endear me to him/her, hands down!
She was getting anxious to leave because it was time. She and I waited at the door while Ryan paid the tab (thanks, Ryan!). I helped her zip her jacket. She seemed happy to have that accomplished, and told me, once again, that she loved me. And then she chuckled, "I don't know who you are, but I love you anyway". She saw the irony in what she said. It was both funny and sad. I love you, too, Bonnie. You just won't know it!!
If I understand nothing else about people suffering from dementia, I do know that the essence of who they are still lies beneath the surface, and what they are losing by way of mental faculties terrifies them. Consider putting yourself in the shoes of the sufferer, knowing that he/she is losing ground but powerless to change it. The result can be depression, anger, combativeness, tears...and alienating those who are taking care of you.
And what I know about caregivers is that they give and give until the afterburners are out of fuel. There is no happy ending. This is one of those progressive things that only ends with the loss of a loved one, cognitively, long before he/she is gone, physically.
I love my friend Ryan, and I love his poor wife. I don't feel that I am in a good place to help them much, but I hope to God a light bulb will come on over my head if I can. When it comes to the stresses of illness of one spouse, the only understanding is that they promised to care for one another "in sickness and in health, 'til death do [they] part". I have SO MUCH respect for what Ryan is doing for Bonnie right now, I could cry. God bless them both!
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