Beth and Frank: A Love Story

Sometimes, a story is so good on its own it doesn’t need to be written, just shared as is.  Below we’ve included Frank and Beth’s story, as shared by Frank. The second section features the correspondence between Veronna Ladd, our Day Program Manager and Frank Brezel, whose partner Beth has attended our Day Program. It offers an inside look into caring for a loved one with dementia and how our person-centered Day Program can be a resource for both our clients and their caregivers. We thank them for sharing this with us.

Beth and I have a love story that spans decades, and for almost a decade now, she’s had dementia. She was easily the smartest person in any gathering we were in, but never displayed it overtly. That intelligence was one reason I found it so hard to accept her cognitive impairment, but it may be why she’s still so functional. I have also never seen her cry: not with injuries, not at sad movies, not during her one daughter’s struggle with cancer or her death, and not now.

But once I recognized how much Beth was slipping into the mists of dementia, I cried—a lot: several times daily for months before this more halcyon time where I accept (and rarely cry about) who she is now and what she now has to offer…and that it’s inevitable that she will slip further away.

I want people to know that our relationship is not some Hallmark movie—we’ve had to work on it—but despite the challenges that dementia has created, I don’t love her less or more than before, just differently. I know that someday when she is with the angels, they’ll have someone to look up to.

I’ve known Beth for 32 years. We met while working in mental health for Napa County, and for the first ten years,
were professional colleagues and supporters. Beth was in a long-term relationship, but she and her significant other
split up in late 1998. On July 2, 1999, I delivered a report to her office, and she invited me to walk to the chef ’s
market downtown. We sat down to enjoy a glass of wine and she looked at me and said, “Why aren’t we in love?” Rather than answering her I invited her to dinner. By the end of summer, I was ready to acknowledge that I was inlove with her. Over the next few years, my house became our house, and one of her daughters moved into her house.

In 2010, I recognized something wasn’t right. Reports that had taken her 30 minutes to fill out before were taking 3-4 hours. I knew something was wrong, but I didn’t believe that she had cognitive degeneration. Then she got lost on the two-mile drive from our house to the gym, and while walking our dog at the River Trail. She stopped walking
the dog in our own neighborhood when she got disoriented and ended up at her old home.

In 2012, she underwent all sorts of assessments and a brain scan. In 2013, she had another scan—we could
clearly see the loss of brain tissue. The doctor said one word, “Dementia.” I hired a home health aide to watch Beth while I ran errands or went to the gym, and that worked well. But one night, she began what I now know was sundowning. She wrapped the leash around the dog’s neck and insisted she was taking him for a walk. I blocked the doorway and called her daughter because there was no talking her out of it. Her daughter was still at work, but her husband came and together we got Beth to relax and go to bed.

Our home was too small to bring in 24-hour care. Her daughter and son-in-law offered to have her move in with their family. They found a larger house where there would be enough space for the whole family.

These days, I bike to that house to spend an hour with Beth every day. She doesn’t say my name, but she smiles and laughs and holds my hand. We listen to music. Beth talks, but what she says often doesn’t make sense. That’s ok—she’s still communicating. I am still learning from her, and trying to be as compassionate and smart as she was and is. She has always been focused on being helpful to those anyone who was hurting. In fact, her ultimate rebuke was, “That’s not helpful.”

One of the wonderful things about the Day Program for Beth was that it allowed her to do something she was so very good at and loved to do, pre-dementia: to be helpful, rather than be helped. It also allowed her to have brief interactions with people she did not have to be close with —it kept her from the isolation that is common to so many with dementia.

The Day Program’s focus on participants as individuals makes it an invaluable program, and its staff touched our
lives in many ways. I am grateful for all they do.

Howdy Veronna, Yesterday, the activities bag for Beth from Collabria was dropped off. It included a binder of pictures of birds. There was a note attached that said that Beth liked looking at the book. How long shall we keep it? Thanks for your connection. – Frank

Hi Frank, It’s great to hear from you! The bird book was something that our activity bag team thought Beth would like and it is hers to keep. If you know of anything that Beth might enjoy receiving in future activity bags, PLEASE let us know. We are dedicated to individualizing the bags as much as possible so your feedback is truly appreciated. -Veronna

Hi Veronna, Thanks for your prompt reply. There’s no special activity I can ask for at this point. I spend an hour every day with Beth, but most of the time is spent with her expounding a two- or three-sentence delusion to which I grunt an assent to and then she says another…which has no connection to the previous one or the one that will follow. We interrupt that flow by my avowal that I love her or adore her or respect her or appreciate her (all of which I really do); then she smiles and says assuredly, “I know.” Maybe we hug and then she proceeds to say with great earnest feeling more gibberish. So…I don’t do any other activity with her. However, Melissa and her granddaughters may have some ideas. I’ll check with them. – Frank

Hi Frank, What you clearly described is what we call “word salad.” We know that in her mind, there is clear emotional and/or intellectual information that she is expressing. It just doesn’t come in the form of connected sentences we’re used to. I’ve noticed one of her favored activities is to talk with people. I’ll bet she was an excellent Social Worker!

We now know it’s more important to connect and help her understand that we are connecting rather than trying to make sense of words and sentences. And when she does come out with words that connect to what she is wanting to express, that’s a wonderful moment, too. Continuing to tell her you love her is always good. I miss seeing the deep affection that you have for one another. I love the “I know.” You are doing so well on Beth’s journey and keeping up with her changes. Keep doing what you’re doing, allow her to be as independent as it is safe to be, and enjoy each precious moment with that lovely lady! Feel free to check in any time Frank. Best to you, Beth and your family. -Veronna

Hi Veronna, Let me add a clarification to my prior email. (By the way, both Beth and I did work with some severely mentally ill folks when we worked at Napa County, and we got full exposure to some of the best word salad.) Beth’s “delusions” are most of the time perfectly constructed sentences; the content is delusional. They tell in two or three sentences something that an unspecified “he” did or is ready to do, or something that her mother had an opinion about…a few minutes prior to the utterance. I used “gibberish” as a general term for what she says, but there sometimes are nonsense terms mixed in with the English words. My favorites are “to go to go to go” and “like-a-like-a-like-a” and “munchy-punchy.” Sometimes, my grunting replies sound like “Oh, I totally agree with that” or “Is that what your Mom thinks”. And it doesn’t matter if it connects to what she said or not. She smiles and moves on to the next delusion.

And then I drink in her smiles and laugh and give thanks for what she offers — thoughts and looks and an amazing brain that is doing wonderful, mysterious acrobatics despite the challenges of missing neurons. Thank you for your support of what I do, and what the Morrises and Beth’s incredibly devoted and competent home health aid do. -Frank

 

Hi Frank, I didn’t realize that you had so much experience with people who have verbal responses like Beth. No wonder you are so good at communicating with her. My favorite line of yours…. “I drink in her smiles and laughs and give thanks for what she offers — thoughts and looks and an amazing brain that is doing wonderful, mysterious acrobatics despite the challenges of missing neurons.” I just love that! I’ve attached some photos of our “best-looking couple” from the other  day’s performance by the Strays.-Veronna

 

Hey Veronna, Thanks for photos. I think the looks part is all Beth, but we both contribute to being the happiest couple when we’re dancing. And thank you for booking the Strays. It’s now the only time I can share them with Beth because she won’t sit and listen at their other venues the way she did up to a few years ago. (PS: “My Girl” is one of the Strays’ regular numbers. When they play it anywhere but Collabria, it hurts my heart because it reminds me that my “girl” isn’t there to share the song with me.) -Frank

Oh Veronna, It was so joyful to see you and everyone at Collabria at the drive-by visit! I savor your note and photos of us dancing as a way to prolong the moments when Beth got to see you and you got to see how delightful Beth is (most of the time) these days. I have forwarded your email to Beth’s daughter and to Dave Dunlap of the Strays so that they can have a taste of what Beth and I enjoyed.

Thank you for all the effort put in to make it a happy experience for us and for the others who took advantage of how wonderful everyone at the program is, even in a version modified to adapt to the pandemic. Please convey my appreciations to your colleagues. Warmly, -Frank