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"Hellooo Tim and Holly! How are you? How is your world there, and your movie? Your weather and your friends and family? You, yourself from head to toe? All are part of the universe and very important. And so am I! And I want to tell you how I feel GREAT! This morning, GREAT! I never thought it would happen...(laughs a long time) call me when you have time but I will also try to obey your limitations...yes! I've got some things to talk to you about. And uh, but I will try to behave and not try to talk when you have to go, or else you will just have to hang up on me. Okay? (starts singing loudly) IT'S A BEAUTIFUL DAY IN THE NEIGHBORHOOD, A BEAUTIFUL DAY IN THE NEIGHBORHOOD!
Family and friends' comments (and my eulogy) begin 15 minutes into this video.
The opening song, In Every Lovely Thing, based on a poem attributed to Mary Frye, was originally written by my husband Tim Erskine in 2004 for my mom's sister, my aunt Sharon Daniel, who died unexpectedly during surgery. Tim plays guitar, I sing. We wanted this song of comfort available for anyone who needed it free to download.
This eulogy was satisfying for me to deliver because I feel that through most of my life, I saw my mom easily ridiculed by other people. This became easier and easier for people to do as her dementia progressed. She might have been too passive in that she went along with being made fun of, always playing the fool. She was never one to puff up or even defend herself. That was hard for me to watch at times.
I always felt protective of her, as long as I can recall. She had grown up around a few angry people with explosive tempers, and that was hard for me to watch. She often told me that some day our roles would be reversed, and I would be the mother and she the child. I remember she taught me the word "percipient" when I was little. She was percipient. She liked that word and used it a lot.
My gut instinct told me that she was a covert wise woman. She was class Valedictorian. She studied French and Spanish and got a degree in psychology with the aim of becoming a counselor. She was constantly reading and writing. I had gained possession of around 30 of her journals full of art and poetry and aspirations. Reading them, I could see this woman was no fool.
And in case someone might be worried about what her journals revealed, let me say, she never had a harsh word for anyone. Her writings over the decades have nothing but sympathy and prayers for others. Even for those who I knew caused her extra pain. Like the guy who fired her from her Mitsubishi secretarial job of 7 years in Pittsburgh that she frequently told me gave her a hard time at work. I saw she had written his name out surrounded by positive symbols, hearts, flowers, under a plea for God to bless him. She was always asking for blessings for everyone. Her writings astonish me.
And I feel I did communicate at this memorial who she was to some who were present. I feel that some eyes were opened, and these people expressed wonder and gratitude to truly know a woman they never really had the time to know better, life being so busy. Judy was not a ridiculous woman. Every day I marvel that this person existed and that I had three years to tend to her body when she was unable to walk or hold objects or talk. And she was happy even then.
My Eulogy:
Mom’s default personality was a sunny one.
(I went off script here and talked about something I found in one of her journals that I have come to think of as the muster exercise. She wrote, "As much energy and joy as you can muster. 33 seconds only." The 33 seconds is so random, so mysterious, and so mom, it tickled me. But I did try the exercise--not for 33 seconds--and after I felt GREAT. I thought, this is a wise exercise. Why not work out your positive emotions so they are more used to activating? I can't stop thinking about this!)
I’ve thought a lot about what the purpose of my message should be. Mom was my best friend, ready with wise, loving advice about managing my heart through life.
But If I were to talk about her whole life, I’d take all day. You’d end up loving her and getting really tired of me.
I’m going to point to the five poster boards and say, that’s who she was. And focus on the years you may have missed after she left Colorado.
Poster 1 of 5: Some of Judy's words, ALL her journals look like this, seriously. No cherry picking happened. Double click on the image to read the words better.
I have two goals.
1. First, I want to thank everyone who cared for her and supported me caring for her.
2. Second, Judy loved self-help and spirituality. She would chuckle “It’s my favorite subject!” If I could use her life to inspire others, she would say her favorite word: Wheee!
FIRST, THANK YOU.
First I want to thank her first caregiver, my stepfather Mike Wadyko.
In 2014, he and mom realized her condition was serious. I could not understand, at first, why they got divorced . My mom tried explaining. Sent me an article on this strategy from AARP magazine. They made me financial and medical POA.
I got her onto Medicaid. I learned, understood. You must have less than 2,000 dollars in assets to stay on Medicaid. Their divorce was a big sacrifice to keep from losing their house, everything. Assisted living and nursing care costs, at the minimum, 10K per month. I'm not a financial person; I don't know if there could have been a better way. All I know is it worked. Medicaid was actually fantastic. (I almost miss the mostly very nice medicaid agents and I felt genuinely wistful when I was told my role in managing my mom on CO and WI Medicaid was officially finished.) If you must go onto Medicaid, don't be afraid. Just ask them for help and don't hide anything. You call them, they explain the rules, and you follow the rules very carefully.
Mike insisted they were still married in spirit. Mike proved this, visiting her several times a week. I can’t imagine the pain Mike must have felt as a believing Catholic, sacrificing so that his wife could continue to have care. I often wonder how Mike’s heart managed, seeing the smart, funny, compassionate woman he loved for 30 years, who loved reading books and writing letters, lose her ability to talk. She hated that we had to take her driver's license away in order to protect herself and others. This isolated her in her home. She forget how to use appliances like her oven. She lost the ability to say “Mike” and said My mmmman. My mmmmate.
Mike began calling me every day. (Sometimes, three times a day!) I learned to lunge for the phone, strap it to my head with a headband, letting him unload while I did chores around my house. Always, he was worried about Judy’s happiness and health. We brainstormed solutions, or he just let off steam. I learned that if I didn't let him talk to me regularly, he could spiral into a dark place that was difficult to talk him out of.
Sometimes all a caregiver needs is someone to listen and validate their experiences. When it was my turn to take care of Judy, I learned that. For those of you who “just listened” to me, That meant everything. Everything!
ASIDE: Here is a strange experience I still can't explain.
One of these brainstorming phone calls, Mike said I should get Judy on a waiting list for the very fine, five-star Lutheran nursing home I minutes from my Wisconsin home that I told him about. Just as a backup.
I sat in my car in the nursing home parking lot with the form I had signed her name to without telling her which I could do as POA filled with angst. (It always felt weird signing her name without her permission; gradually I got used to it when she could no longer write.)
Taking her away from her Colorado community or 25 years? And from Mike? It seemed impossible and cruel.
I thought, life puts you in these damned if you do, damned if you don’t situations. Where it’s hard to know what to do. A swell of heartsickness hit me, sitting in my car in the parking lot. Of course getting her on the waiting list didn't commit her to this nursing home, but the idea of her moving away from her beloved man and friends and community made me feel sick.
Then a strange thing happened. It felt like a memory, but of the future. I sort of swooned with an intense feeling. I imagined myself driving and parking in this parking lot over and over and over. SHE WILL BE HERE, I thought. I WILL BE COMING HERE ALL THE TIME. I looked up through my car window and circling right over my car was a bald eagle, startlingly clear.
Shaken, I went inside, dropped off the form. The staff had not seen a bald eagle out there, I asked. I haven’t seen an eagle over Scandia since. I keep looking.
I had to call Tim immediately. He listened and validated my strange experience.
Years later when my mom really was at Scandia, I always remembered that “I WILL BE COMING HERE ALL THE TIME feeling hitting me in the parking lot of Scandia nursing home, when it made no sense. I did in fact pull into that parking lot over and over and over. It was the same parking lot spot I pulled into on the day she died.
Poster 2 of 5: Judy's older years, Colorado with her husband Mike and transition to Wisconsin at Scandia Good Samaritan nursing home in Door County.
I want to thank more people.
My dad Richard Phaneuf, who remembered things about my mom’s life that I never knew and gave me support and sympathy over the phone.
My sister Robin, supporting me in sharing our dreams and goals. It’s meant so much to me to grow closer to my dear sister in this journey over losing our mom together.
My brother Joe, with his medical and spiritual advice. I remember he told me to listen to the compass of my heart when it came to moving Judy, when I was torn up about taking her away from her Colorado home. He was right. Plus it's handy to have a brother who has worked as a nursing home doctor.
My sister in law Jurene, always sympathetic and responsive. Just her act of validating my many ups and downs helped more than I can say.
Joe and Jurene lavished us with gifts! It felt like someone out there always saying Good job! Good job!
This Colorado community of many of Judy’s friends, many I don’t even know. (Please give me your contact info through the memory book or cards so I can keep in touch.)
Judy’s art therapist Kym Allison, now in Crestone, CO, helped mom express herself. Judy loved what she called her “art class” when she was in assisted living, and Kym helped give us these priceless works of Judy’s last works of art.
Poster 3 of 5: Most of these are my mom's art therapy works. Some on the left are some of her earlier works that I wanted to share as well. She treasured her son Joe's playful image of her rapt, reading a psychology book (I see he titled it Psychology tall tales) while our dinner burned. Couldn't resist sharing that as well.
Rita Wagner who gave Judy massages and healthy treats.
Caregivers Judy Davis and Emmy Lerma regularly liberated my mom from assisted living or the nursing home, took her to the hot springs pool, art galleries, farmers markets, and parks. Mom relished this escapes.
On one visit to Glenwood Springs CO, I became desperate seeing my mom’s decline, and begged this very Lutheran congregation, where my mom sang in the choir, for help after attending a service. Members Karen and Tom Cochran introduced me to Emmy Lerma, describing her as like family and an angel on this Earth. She is. Emmy has become like a second mother to me and my husband Tim. She's amazing and we love her.
Here's a funny coincidence about Emmy. When I was a little girl visiting my celebrity CMC professor grandmother Neva Daniel at her Glenwood Springs home Dulce Domum, I always wanted to go to one place. The Watersweeper and the Dwarf! This was a gift shop in downtown Glenwood that had amazing unique artistic creations in it, and most intriguingly, a little fountain with a statue of a dwarf sweeping it. How could I have known that the longtime owner of that shop was Emmy Lerma? I felt right at home in that shop. I know it was also a favorite place of my aunt Sharon's. Emmy is also a talented watercolor artist, and created the shop with the intention of allowing other artists to have their unique works sold. She then moved into the caregiving business for 35 years. Emmy’s longtime caregiving experience was a lifesaver for us. Emmy got who my mom was. Emmy knew how to talk to my mom, and how to manage her as her disease progressed. I learned by watching Emmy.
I want to thank the Wisconsin people.
Scandia Good Samaritan in Sister Bay felt like landing in heaven. There were happy, friendly staff, activities galore. Flower and vegetable gardens everywhere. Daily devotional services, hymn singing. An aviary. A thrift shop across the lot supported the nursing home.
Mom loved thrift shops. Before the pandemic I sometimes wheeled her across the parking lot we would look at all the stuff.
The staff at her new nursing home adored Judy. My mom was in fact adorable, always smiling and singing.
The day after Judy was first admitted to Scandia the activities director Patrick Knapp told me. “We learned one thing about Judy. She’s a singer!”
I want to thank all the Scandia staff that loved my mom so much. In particular, Kathy Copisky, a CNA, had a special bond with my mom. Kathy and my mom made funny faces at each other and it was so much fun seeing my mom's face go through all sorts of expressions thanks to Kathy! So many times I went to bed not able to communicate to my mom and having no idea how she was doing (my mom couldn't talk anyway, even if I were to call on the phone) thinking, thank goodness Kathy's there with her.
I want to thank hired caregiver Jeanne Kuhns. Jeanne is a caregiver, who also happens to a musician and artist and nurse. Jeanne took this beautiful photo of Judy in the Scandia gardens.
Judy loved the Scandia gardens. Thanks to Jeanne Kuhns for this photo.
Most of all, I want to thank my dear husband Tim.
Tim helped me move mom to WI after Mike’s death. He risked his life driving sleep deprived in a deadly WI snowstorm, right after his own father died, March 2019. And he has never complained about caring for his mother in law. Ever. He always called her "mom" and always told her he loved her. He's never tired of my telling him stories of her life.
Mom loved Tim. When we first started dating 20 years ago my mom insisted on calling Tim her son in law. I scolded her, since I had no idea where our relationship was going, but she mischievously insisted she "just liked the sound of it!"
When any of my many visits to Scandia had me depressed that mom was declining, Tim let me unload my fears, then insisted on visiting with me the next time for support.
I often have trouble describing my husband, who is an inventor with over 70 patents, an artist, musician, movie maker, programmer, but always anxious that he's doing the right thing and doing it correctly. Of all these things, he maintains that being a kind person is the most important thing to be. Losing her ability to talk, Mom stuttered trying to describe Tim. “That man! He’s always doing things!” She'd say.
She always lit up to see him, though she had trouble remembering his name.
Mom’s big vocabulary helped her as she lost her ability to speak. Trouble with word finding was her first symptom. She talked slowly, inserting surprising words.
Once I called her in Colorado. She was having trouble as usual remembering Tim’s name. She tried, saying “How is your…mmm…mmm…and finally she said:
HOW IS THE MAESTRO OF YOUR DOMAIN?
I said that the maestro of my domain was doing fine. Tim and I laughed for some time over that. Although I wanted to be the maestro of my domain, I said to Tim, a little miffed.
______
LESSONS FROM JUDY:
Optimism. I found in all these many dozens of journals of hers that I inherited stuffed full of spiritual aspirations, one exercise she had jotted down that made me chuckle: Muster as much energy and joy as you can! 33 seconds only."I spent a lot of time wondering how it was that a woman who had no control over her body had so much joy. I think she practiced her whole life.
She once gushed to me on the phone from her Colorado nursing home, “I think I’m evolving into a new form!” Yeah, wow, I thought, that's one way to put a positive spin on it, I guess.
I suspect given her symptoms and how they progressed, she had frontotemporal dementia, not Alzheimer’s, though I can't say for sure. FTD is almost as common as Alzheimer's.
A few studies suggested that people with FTD (and other studies say some of those with Alzheimer's) might live more and more in the now.
I think a lot about the pros and cons of living in the now. The Default Mode Network (DMN) are some brain regions that help us plan, to think about others state of mind, to understand stories, to reflect on the past. But when we get stuck in planning mode, we can get anxious and unhappy. Most of us spend too much time in the planning mode, the DMN.
Mom’s DMN seemed to be shutting down.
When people talk about the need to live in the moment, I think, true, BUT…you can’t function. You can’t dress yourself or make a meal. You need a balance of planning and being in the moment.
Being in the moment made Judy like a child in a state of perpetual wonder. She was just a joy to sit with. Everything was interesting and beautiful and riveting. Even the cheesy cartoon sloth on a fleece lap blanket. She would pat it and say, ooh beautiful!
Mom still had occasional struggles, even at Scandia.
I’d watch a CNA use the human forklift they used to lift her on and off the toilet. This happened several times a day. Mom would grumble, “I’m not enjoying this.” And the CNA responsible for changing her underwear would say, “Well honey, this isn’t exactly my favorite thing to do either,” and they would both burst into laughter.
They would park her on the toilet, close the door and wait before knocking, using the forklift, putting her back in the wheelchair. I often found myself stuck outside the bathroom waiting for my mom at Scandia, waiting for her to be placed back in her wheelchair so we could go around the grounds. Waiting, I often heard my mom singing on the toilet. I would look at the CNA and we would raise our eyebrows at each other. "Someone's having a good day," the CNA would say to me.
My mom became less able to hold anything. I learned how to feed her, which is a little scary (Joe taught me the chin tuck method) because if something goes down the wrong tube, you get aspiration pneumonia, which is a common and very bad way for people with dementia to die. I was proud that I could usually get her to eat everything off her plate, though it took over an hour. It was a LOT of work.
After feeding her at the end of the day, she’d stiffen up and tilt in her wheel chair, losing trunk strength. I’d struggle to right her without hurting her. Her fragile skin tore easily. When she was most tired at the end of the day, she would say sadly, “I want to go HOME.”
I’ll never know what she meant by wanting to go home. Her bedroom? Colorado? I like to think that she made it home.
At first we avoided telling Judy that Mike died.
Experienced folks warned me that people with more advanced dementia can remember the pain of the partner’s death repeatedly, a daily torture. So we redirected her when she asked about Mike. “He’s on a spiritual retreat!” We’d say. she just rolled her eyes.
The first two months at Scandia we struggled. She often refused to eat. She Lost 30 pounds. She got the flu. Two other residents died from that same flu. I thought, ok, this is it, this is how she’ll die. Joe consoled me, tried to prepare me. I tried everything. Chocolate was a breakthrough. I scrambled to buy bulk forms of healthy chocolate, nutrition bars, that sort of thing. She started eating again. Often I would give her food, and she would hand it to me, or other residents, she was so generous.
Fortunately her Scandia’s glorious settings distracted her. She stopped asking about her man. Dementia was a strange gift. It helped her not grieve the love of her life.
When I walked through the door she started raising her arms, crying out joyfully. I raised my hands and cried out too! Scandia staff started anticipating this ritual and would say, wait, Holly’s coming in, here we go, and Wheee!
Eventually I felt I had to tell her about Mike’s death. It had been over two years. She was settled, happy. Scandia was letting me meet mom outside under a gazebo in a flower garden, masked, distanced by picnic tables.
I brought my little harp as usual and placed it on the table. I pulled out a big studio photo of mom and Mike saying, do you know who this is?
She calmly said “Of course I do.”
I said Mike died instantly. (They say he did, breaking his neck falling down a flight of stairs after visiting her on Christmas Eve 2018.) That he gave her everything when he did. (She did get an inheritance from him that I struggled to manage while keeping her on Medicaid--most went to the 10K per month nursing home!--but it did help us move her to Wisconsin before it ran out. I had to show Medicaid every receipt spent and show it was all for her, which I did.)
I told my mom that this new nursing home was Mike's dream come true for her. That he would be so happy to see her here, now. Mike’s an angel now,” I told her.
“I know,” she smiled serenely.
And then a wind struck up, and my harp started playing in the wind, which is sometimes does, but not often. My harp strings vibrated very loudly, also with wind chimes chiming around us in the garden. I had goosebumps from head to toe, let me tell you.
What a relief it was to stop hiding pictures of Mike! We then put pictures of mike around her bedroom that we had previously hid, and she smiled to see them. When she died, she was staring at photo of herself with Mike on one side, her beloved mother Neva on the other, under the words GOD BLESS YOU!
The pandemic
March 2020, I was visiting her in the memory care unit called Birchwood, named by a physical therapist friend of mine as "the happiest place on Earth." Birchwood was a wonderful, calm place to be. I loved visiting. It had a big open family room where residents hung out, most wheelchair bound, and they were given peaceful music or entertaining shows on the TV. Mom had come to love The Lawrence Welk reruns and responded with great drama to the musical numbers. At that time I was visiting a few times a week and I was worried it wasn't enough. "I could visit you ever day if you like," I told her.
She raised her chin, got a playful expression on her face and said haltingly and teasingly, "Well, maybe I don't want you to visit every day!"
The staff roared with laughter at that. I think she was trying to tell me not to worry so much. When the pandemic hit shortly after that, I remembered that rebuttal of hers, and her telling me that I didn't need to come every day comforted me some. Still, it was agonizing not to be able to be in the same room with her, to touch her for over a year.
Right before the pandemic prevented me from entering Scandia for over a year, I’ll never forget the last thing she said to me. Just as I was leaving her bedroom, she asked me,
“Are you happy?"
I reeled internally. A woman with no control over her body or life was asking ME if I was happy.
I knelt to her eye level and said, trying not to cry, "Oh mom. If YOU are happy, I'm the happiest person in the world." And I meant it. She smiled, appearing satisfied, and tried to say something like, “Oh, marvelous.”
I left, not to enter Scandia again for a year and a half.
I spent a year going to her bedroom window. I bought battery heated clothing to stand in the snow and talk on the phone for an hour several times a week with the help of a staff member. I had to squeeze myself between the window and a prickly yew bush that put holes in my parka. She loved my weird window appearances. I acted goofy, sang, got her to sing with me. We visited virtually, too.
Once vaxed and boosted I was allowed back in Scandia as a volunteer, playing harp for residents. I tried to see Judy every other day, trying make up for lost time. I loved sitting with her. I let her Facetime Emmy once a week and mom lit up to see Emmy’s face from Colorado. I fed her ripe cherry tomatoes from one of the outdoor gardens.
All around you
Let me back up to right before it became obvious she had a terminal disease. This was 2014.
In May 2014, mom visited us in Wisconsin, what was to be her last visit to my home as a cogent person, and I had a forboding sense that was the case.
I agonized, realizing her illness was likely untreatable and progressive. On a walk together, I asked if she could help advise me, on my losing her. My voice trembled.
She immediately got a light in her eyes, smiled, gestured to the spring flowers, and confidently said she would be all around me. In the flowers and everything beautiful around me.She also told me she'd give me little signs here and there. So mom.
She tried and failed, to quote a poem that I looked up later, I have available for people to pick up after the service, Kinship by Angela Morgan. I recall she and her parents, who were both college professors who loved poetry, quoting bits of this poem. It's interesting to me that this poet lived in the same town as my mom's parents in Kansas when my mom was a little girl, so I wonder if there was some stronger connection there I am not aware of.
I did not like this advice, at first. In fact, I hated it. I didn't tell my mom this. But I thought, it’s the old bait and switch. I don’t want a flower, I want everything that makes my mom unique.
And then I had a revelation some time later.
All my mom’s unique aspects that I loved are also in other people around me. It was up to me to seek and find what I loved about my mom around me in other forms and people. Which I am still doing.
For example, mom and I always loved sharing books. I agonized that joy would end.
I’ve discovered book clubs. I belong to three. I LOVE sitting with a group of mostly older motherly women sharing books. Its now one of my favorite things to do.
Judy’s loving, motherly energy lives on as—this is a genetics term—a conserved aspect of nature. This motherly, loving energy must live on as part of the fabric of life.
Poster 4 of 5: My mom as a teen and young mother. On the left you can see her time as a student at the Orme Ranch school in Arizona where her parents taught.
My mom as a young girl, the younger sister to my Aunt Sharon Daniel (deceased), and older sister to her brother my uncle David Daniel who is still living. Some of these photos are at the Mather School for Colored Girls in South Carolina, where my mom's father Norvel Daniel was superintendent and my mom's mother Neva taught. The Mather School had a strong influence on my mom; she spoke with pride that her parents worked for equal education of young Black Gullah girls in a time where many in the community were angry and opposed to their actions.
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