Editor’s note: This is the fifth article in a Next Avenue series by Dan Browning about his family’s experience coping with his wife’s frontotemporal dementia (FTD). Preview the entire series here.
Our lawyer Julian Zweber was right. You will always be one step behind dementia because you can’t accept that your loved one is that far gone.
My wife Liz, who was diagnosed with frontotemporal dementia in August 2012, got some news she’d been fearing six months later. It arrived in a two-page letter from the Minnesota Department of Motor Vehicles on Feb. 19, 2013. It was TYPED IN ALL CAPITAL LETTERS as if to scold or intimidate, warning that her license would be REVOKED as of Feb. 25 unless she got a different diagnosis.
Liz was aghast. I sympathized with her. But the truth is, I was relieved.
I wouldn’t get any more calls about her driving for seven miles on a flat tire, destroying the wheel, the anti-lock brakes on the rear of her van and scoring a long, incriminating gouge from the street into our cement driveway. I wouldn’t have to guess why she scraped half the side of the van trying to get out of a parking garage.
Yes, I would have to run her around on countless errands, but I wouldn’t have to worry about her getting lost, or sliding off the road into a snow bank, or crashing into someone who would sue us into oblivion for letting a demented person drive.
Comfort and Joy in Music
I tried to console Liz, offering to to take her to hear her friend Dee Miller and her blues band. Dee has been a terrific friend to Liz. When we entered Hollihan’s, a crowded pub in White Bear Lake, Minn., Dee announced Liz’s arrival like she was rock ‘n’ roll royalty.
Liz loves attention. She was number six of 10 kids; seven girls and three boys. She beamed at the unexpected adulation and hit the dance floor. When the band took a break, Dee arranged to have Liz play keys and sing.
It reminded me of when I met Liz in St. Louis in the Tavern on the Plaza. It was the fall of 1988. I would strike out trying to get women to dance, and before going home, I’d stop next door at the restaurant where Liz entertained at the piano bar.
The patrons at Hollihan’s were generous with their applause. Liz sounded nearly as good as new. But after playing a half-dozen songs, she asked me to take her home. She was too tired to listen to another set.
The End of Her Singing Career
In March, the Flamin’ Oh’s band invited Liz to sing a couple of Rolling Stones songs at a benefit performance in Minneapolis. Liz loved playing with the band and she could not understand why they only wanted her to sing two songs that night.
Robert Wilkinson, the lead guitarist, had told me privately that some of the band members were worried that Liz could no longer meet professional standards, and the benefit was to be a test. Liz stormed onto the stage that night for a third song, which she covered well, but I could tell that she’d crossed a line with the band.
Robert cried when he called me to say that he was going to have to cut her loose. I told him it was all right. I knew the day was coming. I thanked him for putting it off as long as possible.
It wouldn’t be long before Tumblin Dice, another Stones cover band, would have to do the same.
Making Excuses and Memories
Dave Horn, the lead singer, has been a dear friend to Liz. He lets her come to his home and play a few songs on her keyboards from time to time. He told her the band had to let her go. But she’s blocked that out of her mind and says every week that she thinks she’s supposed to rehearse at Dave’s. He lets her keep the keyboards at his house, and makes excuses when she asks about the next rehearsal.
Liz began playing piano at age 4. She attended a performing arts high school in St. Louis and has dazzled and entertained many a crowd. But her professional music career came to an end around her 52nd birthday, just two years after she produced her first CD, Finally!
To distract Liz and provide her with a lasting memory, I sent her on her last plane trip alone on March 27, 2013. I had to accompany her through security and to the gate. She was adamant that she wouldn’t take off her shoes at the security checkpoint, but finally relented; the agents were kind. Liz flew to St. Louis to meet up with her siblings and headed by car for Monroe, La., where the family planned to celebrate their mother’s 82nd birthday.
While Liz was gone, I began the process of stripping away her assets so she’d qualify for public benefits, such as a personal care attendant, adult day care and transportation services for the disabled.
I had come to accept that Liz’s sister, Margaret, and I couldn’t take care of her at home much longer without help.
Below is a video of Dan Browning and his wife, Liz, on their wedding day.
Are you dealing with an FTD diagnosis? The Association for Frontotemporal Degeneration (AFTD) can help. Visit its website at www.theaftd.org for information and resources. AFTD also offers a helpline (866-507-7222) and email support. Another good website is http://www.ftlda.org. The site’s founder, Terri Bratton, lost her brother to the disease.
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- A Caregiver’s Role in Coping With Dementia
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