By 9:30am I had decided I wanted a do-over; I am having quite the bad hair day. Here is what I discovered as the day moved on. As a caregiver this is my JOB, not just me doing the loving thing, doing the death til we part thing, but a job. I need to focus and relax my expectations... all at the same time. Russ' losses are rearranging us from the inside out. In our life with PD there is a sadness opening inside of me. As things get harder and harder for Russ I need to shift my attention from doing the loving thing to the mechanics of the job. I am not saying for a second that I have fallen out of love. The exact opposite...my love grows and deepens, but swaddled in fear. I need to release the emotional worry and dig deep for the positive. My world is no longer his world and my job is to adapt and support, to love and encourage. Sigh.
Short post.. a repeat of what I put on my Parkinson's Better Halves 2 (wives of PD guys) Face Book page.
By 9:30am I had decided I wanted a do-over; I am having quite the bad hair day. Here is what I discovered as the day moved on. As a caregiver this is my JOB, not just me doing the loving thing, doing the death til we part thing, but a job. I need to focus and relax my expectations... all at the same time. Russ' losses are rearranging us from the inside out. In our life with PD there is a sadness opening inside of me. As things get harder and harder for Russ I need to shift my attention from doing the loving thing to the mechanics of the job. I am not saying for a second that I have fallen out of love. The exact opposite...my love grows and deepens, but swaddled in fear. I need to release the emotional worry and dig deep for the positive. My world is no longer his world and my job is to adapt and support, to love and encourage. Sigh.
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This card is from 2017. I love sending cards. I love sending Monday cards, get-well cards, I care cards, memory cards, Christmas cards and now Thanksgiving cards. Over the years my Christmas card list dwindled as my expendable income dwindled. Now, not working, my expendable income is almost non-existent. Of course we have savings, but when there is a free option like Face Book, my blog or email, I can't justify sending 50-100 stamped cards. I prefer the old fashion method of snail mail and personalization. But in this time of digital technology, I have shifted my platform. There is something very meaningful and delicious about planning your Christmas card list, the process bringing out memories of friendship, relationships and shared experiences. Snail mail Christmas cards have always been a December ritual for me, a favorite part of my holiday experience. Now? With Parkinson's looming in our world, diminished expendable income, and less and less adventure to share, it just began to seem overwhelming. Instead I decided to send a few Thanksgiving cards. These went mostly to family this year, the people who have held us up as more and more of our world gets cut away. I sent a few extra cards, posted it on Facebook, sent to the neighborhood email list and now on this blog. I truly want people to know they are a huge blessing in our lives. Connecting with people in any way available is important to me as our losses rearrange us from the inside out. One large group of folks I want to remember are our doctors and their teams. Both our lives depend on this group of professionals; Russ for his life and me for my sanity. Each of us are carried forward because of their goodness and care. Another reason I decided to send Thanksgiving cards as opposed to Christmas cards, was my discomfort at the direction Christmas has taken. It seems more and more a holiday of competitive generosity. I prefer generosity when needed or when you feel so moved to offer, not because a commercial tells me what you need or what I must have! I prefer authentic. This year has been unusual with social distancing, working from home, limiting group gatherings, and zoom meetings. People we used to see regularly are now sheltering in place or waving hello from a distance. A Thanksgiving card was my way to take a Christmas tradition and make it a part of our world at this time in our lives. I made it a card of thanksgiving and gratitude rather than a history lesson of our past year. Don't get me wrong... I L-O-V-E getting your Christmas cards and letters! It has become essential for me to be positive. In real life there is a sadness opening inside of me. In order for me to find peace in our world, I need to release worry and dig for the positive. As said in our Thanksgiving card, Russ has become a master at this, a living example. My ode to that was to share his strength with you here. He is "master of his ship".
My cousin Dottie posted a photo of such a pie (called a tart) a couple of years ago. When it flit across my screen recently I decided to try one. I googled the web for a recipe and this is a bit of mix and match from several recipes. I made 2 small 6" pies, but I think my amounts would be good for one 9" pie. You might need to add one apple to the recipe.
INGREDIENTS for FILLING: 3 large (about 1 1/2 lbs.) apples (I used Pink Ladies) cored, halved and cut into 1/8"- thick slices 1/4 c. packed light brown sugar 3/4 tsp.cinnamon 1/4 tsp. clove 1/8 tsp. nutmeg 3/4 tsp. salt INGREDIENTS for BASE UNDER APPLES 4-oz. soft cream cheese, at room temperature 2 tbsp. confectioners' sugar You may need to up cream cheese if making a full pie INGREDIENTS for CRUST 1 1/4 cups finely ground gingersnap cookie crumbs (about 25 cookies ground in processor) 2 tablespoons sugar 1 teaspoon minced crystallized ginger (I didn't have crystallized ginger so just used 1/2 tsp ground ginger) 4 tablespoons unsalted butter, melted PREPARATION FOR CRUST Position rack in center of oven and preheat to 350°F. Mix gingersnap cookie crumbs, sugar, and ginger in medium bowl. Add melted butter and stir until mixture is evenly moistened. Transfer crumb mixture to two 6" pie plates (or 9-inch-diameter glass pie dish); press crumbs firmly and evenly onto bottom and up sides to top of dish. Bake until crust is firm and slightly darker in color, about 8-10 minutes. Cool crust completely. PREPARATION FOR CREAM CHEESE BASE Stir together cream cheese and confectioners’ sugar in a bowl until smooth. PREPARATION FOR THE APPLES Toss together brown sugar, spices, and 3/4 teaspoon salt in a bowl. Gently stir in the apple slices. Cover with plastic wrap. Let stand 45 minutes, gently tossing every 15 minutes, until apple slices are soft and pliable. TO PUT THE PIE TOGETHER Once the crumbs are pressed into the pie plate, spread cream cheese mix over the bottom. Drain apples of any accumulated juices. Arrange apples in an overlapping circular pattern, starting on the outside edge and continuing in a snug spiral shape until you reach the center. (I cooked up the left over apples separate for a breakfast treat) Dot the pie with cut up bits of cold butter. Heat oven to 350 degrees. Bake until apples are just tender, about 45 minutes. Cool on wire rack for at least an hour. Note of interest: I prefer to make small pies. First we don't need to be eating a big pie; a small one satisfies our need for a sweet. Secondly, I have a pie to freeze or to give away. I loved Kristin Hannah's book "The Nightingale". It captured me immediately and I didn't put it down until I read the last line. I love books about indomitable women. I love books about women's response to WWII. The Nightingale was exactly that, the women of the French Resistance. "The Great Alone" has passed by attention several times in the last year and for one reason or 10 I didn't read it. Then, it was the first book I saw when I opened the doors of our new neighborhood Little library. I grabbed it and guess what...it was signed copy by the author! As I skimmed the pages tying to decide if now was the time to read this book, a passage caught my attention. It reminded me of Parkinson's in an odd way, the aloneness of this journey.
from the book: "This state, this place, is like no other. It is beauty and horror; savior and destroyer. Here, where survival is a choice that must be made over and over, in the wildest place in America. on the edge of civilization, where water in all its forms can kill you, you learn who you are. Not who you dream of being, not who you imagined you were, not who you were raised to be. All of that will be torn away in the months of icy darkness, when frost on the window blurs your view and the world gets very small and you stumble into the truth of your existence. You learn what you will do to survive." Through the years I have met many folks who have lived in Alaska; fisher persons who captain salmon boats in the summer months. In the winter many those folks come to the lower 48, a reprieve from the harsh existence. There have been teachers, employees of hunting guide services, and pilots. Of course there is a lot of space in Alaska so if you are a person who isn't particularly fond of people, you have plenty homesteading options where you can be the only person in a 100 mile radius. Homesteaders in Alaska are free spirited people who aren't interested in the norms of the lower 48 lifestyle. That's what this book is about; freedom, strength and fortitude. It is the story of strong women. It is the story of a man who has burned all his bridges in Seattle and when a fallen comrade from his Vietnam unit dies and deeds him his cabin & land, the dad, Ernt, seizes on the opportunity to bring his family to the last frontier. The year is 1974, a turbulent time in our history. The family is woefully unprepared and immediately begin a crash course in homesteading. The book is a raw story of desperation, undiagnosed PTSD, a family held together by love, fear and the misguided belief that they need no one but themselves. One character, Large Marge, describes Alaska as "Sleeping Beauty one minute and a bitch with a sawed-off shotgun the next". It is a tale of an erratic father and an ineffectual mother. It is a tale of toxic love. As the book plunged forward, I felt it uncoiling, taking up space in my head. Each scar revealed broke my heart and then put it back together. It seems odd to say that a book that makes you cry can be great, but that's how I felt as I read the last sentence. "I will always love you she whispered to the wind, always." On 10/19/20 I wrote a post title BE GRATEFUL. BE THANKFUL. It was a list for daily reflections to spur one to ponder life's choices, challenges and joys. I was thinking of writing a Thanksgiving message and thought I would write my answers here. Russ and I have shared our thoughts each morning and that has been revealing to both of us. Do you have an answer for each of these?
Note: this is written by my friend Chris and posted with permission. Creations by our Parkinson’s Community as published in University of Nebraska Parkinson's Post by T. Christopher Choate It was a Wednesday. The day after Christmas, 2018. Breakfast in New York City. Her kind eyes and stone face were betrayed by her deep breaths and a single tear from her left eye. I’d known her for 25 years by then... lived with her and slept by her side more than half my life. I knew what was going on inside her chest. I could feel her struggle to stay strong, remain calm, steadfast and steady... while her heart broke. My words fell on the table next to a half-eaten bagel and the remaining strawberries, as our world changed forever. December 26, 2018 was the day I told my wife I’d been diagnosed with Parkinson’s disease. At the Grand Hyatt Hotel, on 42nd Street. I’d held the secret for too long. It was no secret, she knew. If not what and why, she’d known something...for a while. I’d been running from the truth for 6 months. In the middle of that magical vacation in Manhattan, I stopped running. I was 45 years old, she was 47. A few weeks later, diagnosis confirmed, we stood a couple of thousand miles away from the sunlit corner of that café in New York... in the bathroom of our home in Colorado. Face to face, hand in hand, falling words replaced by falling tears. I could never ask; she never made me. She recited our wedding vows — and took up the fight against an enemy neither one of us can defeat. And she made it clear that I’d damn well better do the same. In the years since, the bravest woman I’ve ever known has never given up. I’m a narcotics detective; my wife is a college professor. We are the proud parents of a United States Army soldier and a high school student. Our lives had no place for Parkinson’s disease. It changed us — until we found room. The symptoms are mine; the disease is ours. I have no choice; they do. They choose me. This fight. All of it. I have good days and days that set me back a bit. I’m grateful for them all and the perspective they bring. I’m coming to the end of my career in law enforcement, which is a harder task than I’d imagined. I’ve found the white noise in my life muted a little. Priorities and passions are a little louder now. I’m excited for the chance to support my wife in the prime of her career...and grow old with her. I have front row tickets for our kids’ arrival at adulthood. I’m planning on being the grandfather I never had, someday. I’m excited about who I am and the things my disease has taught me to appreciate. I’m a little scared of where Parkinson’s disease and I are headed. I get frustrated...tired. I’m still not at peace with the disease my body has thrust upon my family. I feel some guilt. And I think that’s ok. In our house we often say, “Never out of the fight,” “Keep moving forward,” and most importantly, “I love you.” My name is Christopher Choate. I live in Durango, Colorado. I’m Dr. Jill Choate’s husband, PFC Sam Choate’s father, and Claire Choate’s daddy. I’m a cop, I love to travel, I’m a pretty good cook, and a very passionate mediocre boxer. I’m a patient at the Nebraska Medicine Comprehensive Multidisciplinary Parkinson’s Clinic in Omaha, Nebraska. During my first appointment, Dr. Bertoni put his hand on my knee and said, “You have a choice as to how this goes. Your attitude will determine everything from here on out.” Parkinson’s disease is no fun. But hidden in its’ riddle are gifts. The white noise has faded. The good stuff is taking its place. I have a disease for which there is no cure. One that I’ll die with. But first...I’m going to live with it. I love this family and I am always blown away with Chris' ability to express the reality of life. His words make me think and feel, ponder and wonder. He makes me examine carefully and with attention. When I get to the end of one of his pieces I always have to reflect deeply... there is nothing tentative about his writing.
I am blessed to know him. I am blessed to know his family. Our community is again at level Orange as far as how we should all be dealing with Covid and conducting our days. It means many businesses are going remote or dramatially reducing the numbers of people allowed to congregate at once. They are suggesting Thanksgiving gatherings be with family only. They have canceled open gym time, all schools will be remote learning until at least after Winter Break, In-person church had again been canceled, the Christmas Tree lighting event canceled, theater events canceled, all sports canceled and who knows what else. Bump-outs for restaurants have been taken down and many to most restaurants will now be take-out only. There was no downtown trick-or treating this year. We live in a new world order. The rule of thumb is Safer at Home and in the Vast Great Outdoors. Face masks are required in all public spaces. All are encouraged to be home by 10PM. So I ask, how do you navigate all that? I wonder that every time I don't put on a mask when someone comes to the door (they are masked). I wonder that every time I go in a grocery store and see folks not wearing a mask. I wondered that as the announcement came over the loud speaker today at the grocery store that we should all be covered and then the deli counter guy only had his mouth covered. (I did stop in at customer service to ask... and one manager type guy went ballistic and raced from the room). I wondered as I drove by Starbucks yesterday and they were still allowing people to come inside rather than their former rule of drive-up or outside the door pick-up only. I do take precautions in public places, but not in my own home, though I do wish my hands frequently, clean counters and towels and bedding regularly. So how are you responding? Are you getting less and less vigilant? Are you repeated saying "I am so over this!" Are you choosing to go back to your normal routine? With the rising numbers of positive cases are you back to more hand washing the use of disinfectant and hand sanitizer? Are you wiping down your grocery cart? Are you wiping your packaging and washing fruits and vegetables when you get home? Are you afraid or do you feel as though there is way too much hype? Are you in Biden's camp or Trumps? Do you know anyone who has tested positive? What's going through your head these days? I sense a restlessness in many. People are so focused on themselves that they forget there is the wide world surrounding them. But I believe the pandemic is reminding them that there is something bigger then themselves going on, reminding them of who and what is important to them. That's a good thing wouldn't you say? Rather than moan about Covid and the restrictions it places on us, I need to focus on what is real and true and hopeful. I need to focus on connecting with family and friends. I need to focus on my ability, because of the choices I am afforded, to choose healthy. I need to focus on the glory of food, water and shelter that gifts me every single day. Masks are a part of our world now. For how long, who knows. I am aware that a sizable portion of our population believes we are overreacting to Covid-19. For the most part masking recommendations depend on voluntary cooperation. The city of Durango seems to have been very proactive in favor of safety, with huge computer signs on all the major roads into town saying Mandatory Masks in effect. Wear a mask! As I move about town 99% of the people I see are in fact wearing a mask.
I did see one guy come out of a market, rip off his mask, announce to no one specific "fuckin' mask', but he had worn it into the store. And if truth be told, though the margin is small, there are many haphazard ways people wear their mask. Just covering their chin, just covering their mouth, or too big and open on the sides. Of course this is coupled with a suspicion that they aren't washing them every day or even very often. I guess the important thing to remember is that there are two camps and both are hearing the same publicly available information. We need to acknowledge that some believe in doing whatever is necessary to curtail the virus. Others believe we need to get on with our lives, let people make a living and kids go to school. So what camp are you in? I am thinking I am somewhere inbetween. I have certainly been vigilant to keep Russ safe and out of any health facilities. I agree that masking up in public is the right way to go. But I have had friends over for an outside gathering and not masked. No matter my thinking, I care about the peace of mind of my family, friends and neighbors, even if they hold different attitudes. Covid is anxiety provoking and the ramifications of the restrictions can become an overwhelming result. Just before finishing this piece I read in our local paper that Durango is now Level Red. That is far more extreme, far more anxiety provoking, far more serious. Again, in this month of Thanksgiving I am grateful for the vast pieces of my life that will support us through this and we thankfully have one another and are not alone. What is my immediate plan?...
With that, I bid you peace, love and hope. One of my well used cookbooks is The Greens Cook Book by Deborah Madison, named after her San Francisco restaurant. I only seem to make this recipe a couple times a year, but we always surrender our taste buds to this one! I grew up with meat, potatoes, vegetable and a roll for dinner. I could not begin to afford such a meal in my young adult years so I shifted to some more creative options. (and as I said, in those days I could grate cheese, rip lettuce and cook frozen peas) I have never served cereal or popcorn for supper/dinner. I have friends who have, but that never seemed special enough to me for a meal. And I have never been organized enough like a few of my friends to make all the weeks meals on Sunday for the coming week. My style is more plan 3 or 4 meals for the coming week, buy the ingredients and pinch hit the rest. I'm sure some would think bread pudding an odd choice for a dinner, but it is cozy, soothing, warm and yummy. This is my conversion of Greens Cook Book version. If you want the original version you will have to ask me to send you a copy.
My version of SAVORY BREAD PUDDING As always, I lovely follow amounts and directions... Ingredients:
Layers: Here is the end set-up of layers to think about while you construct. I put the products I like to use in the photos BOTTOM TO TOP
Directions:
I have written some form of this message many times. I guess when you walk the path of illness, for Russ the long tortuous path of Parkinson's Disease, it comes to the point where connection with others matters greatly. It is a repeat performance day after day. Confronting imminent mortality is frightening, but slowly and timidly one moves forward on the uncertain path and allows others into 'the secret'. Hiding from the truth is not the answer. The importance of human connection becomes a healer. If we chose to hide in isolation, we would be constructing a shallow world. Engaging in good faith, family and friends is more realistic, allowing both little and big pleasures in. You may have noted that I say 'we' and 'our' when referring to this PD journey. I am ever grateful I am at Russ' side. I do know local folks who walk this walk alone and in their social isolation, dysfunction is invited into their world. I don't want that for Russ. We are a team and our approach to PD is in unison, together. And I know that the absence of social support contributes to health decline and premature mortality. No one should be alone when confronting illness challenges. So how can I be a team player if hunkering down at home becomes more and more comfortable for him? How can I be witness to more and more TV time (our first TV in over 40 years!)? I know Parkinson's is problem solving, reacting, fretting, anticipatory grief, and working with every fiber to 'be there' whatever that looks like. How can there be connection when there is fear? At this point in our journey a company, Visiting Angels, has stepped in to be part of our team. This means Russ is never alone and there is always 'connection'. I am aware that many people struggle with how to help, how to connect. Sometimes they stay away because they don't know what to say or don't want living proof of human mortality. Sometimes they come on so strong it frightens Russ. I am also aware that for many people with a degenerative disease, asking for help amounts to failure. Not so for us, it is our hope! Yesterday we stopped in the street on the way to the mailbox hut and talked with neighbors. We were in conversation and connection for about 5 minutes. Leaving Russ said "Those little conversations are so hard, I can't get my words out". Hard or not, my side of the team wanted to engage him in 'connection'. To keep Russ from digging deep into his own mind, we need to have people connect. Visiting Angels has been so kind. We have 2 'regulars', Chance and Audrey, who come 4 days a week. They understand the need to engage and connect with Russ. The three of us all have our own approach, but we do help Russ connect his shrinking world of difficult terrain to wholeness. Visiting Angels have a team behind the scenes as well and they have our backs... as they say. Visiting Angels are my angels. Noun: a spiritual being believed to act as an attendant, agent, or messenger of God, conventionally represented in human form. This company evaluates the situation and comes to help. For us, team Heaton, they are connecting with Russ, engaging him in activities and alert to his safety. A few things they help with are:
A little commercial from me: Visiting Angels is a national company and they have an office here in Durango. They have truly answered the Heaton team need for safety, care, respite (for me) and allowing Russ to be home in his comfort zone. And to use the beginning as the end, 'yes he is ill, but Visiting Angels is allowing me to continue to love him by easing 24/7 care. And in this month of Thanksgiving, I am grateful!
I love to have 'options' in the freezer for those days when going to the market is more of a disruption than a help, for days when I have used up my planned weekly menu items. More and more Russ likes to stay home; he is in his comfort zone here and doesn't have to make adjustments, he likes routine. I rarely have him come to the grocery store now that we have Visiting Angels, it always pained me to have him come and then have to sit in the car waiting. Now, when things are on sale I often buy 2 and freeze one for a day just like today. What can I do with chicken thighs tonight? A long time 'go-to' for me is Ann Williams' Curried Chicken. In 1989 a group of parents and teachers from Warren School, the school where I taught for many years, decided to do a fundraiser by selling cookbooks of community recipes. The cookbook was a wonderful way to preserve treasured recipes from our little town. It was a way to share memories of school days of the past. It was a way to celebrate how food has centered the community. And years later it is a way to remember individuals when I see their name attached to a recipe. Note: an average class size for me was 12 and when I got up to the high number of 15 students I got a full-time aide. The very first recipe I tried was Ann's and I now make it a couple of times a year... it's so quick and easy and if there is chicken in the freezer I always have all the other ingredients. MAPLE CURRIED CHICKEN
Note: I replace honey with Maple Syrup, I am after all from Vermont and 'the valley' had many sugaring operations. Ingredients:
Directions:
I serve this with rice and a vegetable Throughout the book there are memories from elders who were in the school years ago.
In the 80's, those years of teaching at Warren School, I would go to Rupert's barn to get raw milk from his holding tank; just walk right in his barn, past the cows in their stanchions and into the milking parlor. I loved going to Ernest's sugar shack when he was boiling. I would walk down the road to Mrs. Stetson's shed and use her kick pottery wheel. And for those of you interested, I could throw a mean pot, but my glazing techniques was so bad that I finally got other people to glaze them for me. Then there was the Warren Store, with a history of serving the people of the town... stagecoach stop, inn, boarding house, post office, hardware store and finally a country store selling every necessary and unnecessary object 'needed' by the townspeople. Still to this day it draws people in. When Russ was a bachelor living in Warren he was on a 16 household party line. For those of you who don't know what that was, it was ONE phone number for multiple households. That means if you wanted to make a call and you picked up your phone someone might already be on the line and you'd have to wait. Some would hang up and try again later or you could listen in. Velma Loose was the queen of listening in, interrupting "Rusty, that's not how it was!" It was certainly a different world of communication than we know of today. When that cookbook was compiled, I was living the life of 'hippy girl'. I had a huge garden, canning and freezing vegetables for the year. I raised goats, rabbits, chickens for their meat and milk. I lived in a cabin with an outhouse. Overall I was a person my parents would run from had they witnessed my chosen lifestyle. (they never once visited me in my adult life) I once made flour from cat o' nine tails! I wore holy & patched jeans to work and was not the little debutant my parents would have preferred. There is good news and bad news from those years. The good news is that I learned so much about survival that I know I could do it again if I had to. Have you ever plucked a turkey? Believe me, it's gross! The bad news is that I was living a life that 'wasn't me', it was all an escape from a world that had became too much for me to handle. That happens for many people, they get sidetracked from their true self as they wander life's journey, sampling, challenging, choosing until the fit works. I can't say my life is unblemished, but I can say that those years at Warren School helped me to grow. I can say, even with Parkinson's looming in front of us that I am in the right place. I can say that each time I take out that little cookbook, I revisit memories and understand how I got here, in this place and time. My testimony would be that I am proud, for the most part, of the end story. |
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