Let Girls Lead and Champions For Change
Finding people who invest themselves in the work of empowering others to reach their potential is precisely what Angels with Shoes is all about.
I am so pleased to know Denise Dunning, Founder and Executive Director of Let Girls Lead, based in Oakland, CA. Their work takes place around the world and is teaching girls, through local leaders, how to get access to healthcare, challenge child marriage, and obtain an education, among a host of other issues that used to hold girls back. Using strategic advocacy, these girls are learning how to transform their own lives and the lives of those in their communities.
The model of Let Girls Lead has been so successful that a new group, Champions For Change, is using their platform to invest in Nigerian advocates to lead the fight for healthy mothers, children and families. Champions For Change is partnering with the Bill and Melinda Gates Foundation to build a movement that advocates for better reproductive, maternal, newborn and child health.
Both Let Girls Lead and Champions for Change are based at the Public Health Institute, a leader in global health and development for over 30 years.
Return to Sarajevo
The first time I set foot in Sarajevo, it was bleak. January 1996 was cold. Bitterly cold.
The Dayton Peace Accord had just been signed and the war was over in Bosnia. For three years, from 1992-1995, the people of Sarajevo had lived like rats…scurrying to and from work and school to avoid sniper fire and hiding out in their basements at night as the daily bombing devastated their city…a city that had been known for its blend of Bosnian, Croatian and Serbian families, neighbors and workplaces. You could smell the smoke in the smoldering buildings and countryside and see the reticence in the eyes of everyone you’d meet. I was there to document the end of the war for KCBS radio in San Francisco, joined by a representative from the humanitarian organization World Vision and a bay area television crew. As an anchor at KCBS, I had listened and watched as the world stood by…and was moved to go to the former Yugoslavia to tell the story of those who survived and wanted a future, because I wondered whether such a tragedy could occur in the SF Bay Area, also a melting pot of nationalities.
For 10 days, I reported live twice a day on KCBS, some days being cut off by who knows who during my conversations, other days not being able to get through my report as I was overcome by emotion. It was in Sarajevo, in the fourth floor apartment of a mother and daughter who opened their home to us, that I met Sanja, who was 16 years old at the time.
Four months later she would contact me and in the fall of 1996, she came to live with our family in San Francisco. After graduating from high school, she was accepted into UCLA. She graduated with a degree in Ethnomusicology, and returned to live in Sarajevo in the summer of 2000. That was the last time I’d been to Sarajevo.
This time, in September 2013, the weather was stunning. We only had 48 hours to catch up…and we wasted no time.
We came immediately to the apartment where I met Sanja and her mother, Jasna, 17 years ago. Only now, the apartment has been completely remodeled. Sanja, who works for the European Union, has spent years fixing up one room at a time. This balcony was just completed, and it’s where we enjoyed a wonderful lunch prepared by her mother. We ate soup with fresh bread. Jasna made dolmas…zucchini and peppers stuffed with meat and rice…and served it with sour cream, then we finished off our meal with fruit filled pastries, baklava and Bosnian coffee. This is the strong, thick coffee many middle easterners love, and it tasted absolutely perfect.
As it was such an incredible day, Sanja wanted to show me the Sarajevo I never got to see all those years ago. We went to every high spot in Sarajevo to look down and around on the beauty, and strangely enough, it looked a lot like the Bay Area, with its rolling hills and steep walks. Simply stunning!
These were the vantage points for snipers during the war, so it had never been safe to see all those years before.
As we made our way back into town, it was becoming more obvious how different life is now for those who live in Sarajevo. The library, destroyed during the war, is projected to open in May, 2014.
And along the old town walking street the fruit and vegetable markets were loaded with beautiful varieties.
The remnants of the 1992-1995 Bosnian War are hard to find. These are the only two memorials in Sarajevo, and they commemorate the lives of the children who were killed.
It wasn’t only the physical structure of the city that is showing improvement. That evening, Sanja and I headed out to spend time with some good friends. Tijana is an amazing musician, singer and conductor and she was performing this evening. Soon, she’ll be on her way to Vienna to study conducting from a master.
And then we had dinner and walked for a nightcap with Amila a very successful attorney in Sarajevo. Of course, these two young women know so many people and were generous enough to share their evening with everyone we met. So much to learn, from the history of Bosnia to the inner workings of life today, to laughter about how they had to live so many years ago. And they share a passion to move forward, to make their lives better, and to leave a legacy for future generations in Sarajevo.
The last morning…I awoke to music and horns in the street…turns out hundreds of people taking part in a half marathon were running down below our fourth floor window.
That’s when you know that a sense of normalcy is approaching. It’s hard to predict what the future holds for Sarajevo…it certainly isn’t easy with a 3-party system in place and decisions that can’t always be agreed upon. But this is a country that’s defied the odds and is still around.
Sanja and I shared one more coffee before I had to leave…we talked about our separate journeys that brought us together…our journeys that continued apart from each other…and how woven our journeys are now that we’ve reconnected. Sanja introduces me as her “American Mom,” and I describe her as my “Bosnian Daughter.” The resemblance is uncanny.
As I left, I reflected on our time in the Old City as scores of people shopped and ate and laughed and mingled and walked freely. Sanja never wanted to live anyplace else. She came to the US to study so that she could pursue life to the fullest. She’s doing just that. Living in a beautiful flat with her mother, working at a great job with the EU, staying in contact with friends all around the world, vacationing in Croatia and beyond when she comes up for air, Sanja is an Angel with Shoes. Sarajevo is no longer bleak.
Swallow Hill Belt it Out Camp: Imagine!
In this week long summer camp at Swallow Hill Music Association in Denver, Barry Brown transforms the lives of young kids who learn to sing, dance, play and then perform in a flashmob! Through it all, there are speakers, games, exercises and lots of performing!
Swallow Hill Belt It Out Camp: Nothing is Impossible!
In this week long summer camp at Swallow Hill Music Association in Denver, Barry Brown transforms the lives of young kids who learn to sing, dance, play and then perform in a flashmob! Through it all, there are speakers, games, exercises and lots of performing!
The Accidental Caregiver…#10
My mother’s sister and niece just flew in from Denmark, and their arrival has transformed my parents. They came bearing gifts: books, scarves, dessert plates, pajamas…kind of like Christmas in May for my parents. Their injection of laughter, familiarity, interest, and enthusiasm is the best medicine I could ever have imagined. They’ve been planning this trip for months, and the anticipation has been so great for everyone. And now that they’re physically here, wow, it’s a shot of joy that is huge for us all.
We have a good life together in our sandwich generation household, and a routine that works. Every now and then, breaking out of that routine is crucial to bring those ‘bright days’ my dad so desperately fights for, right to the forefront. Let me be clear, this doesn’t change his confusion or disorientation one bit, however he seems much less bothered by his inability to sort out his thoughts. We all laughed together, even dad, when he misunderstood our conversation about the Queen of Denmark last night and asked, “What’s the name of the cleaning company?” When one of us realized queen and clean sounded alike, and pointed this out, he started giggling and went into great detail about how the two words can be confused. “Absolutely,” we all agreed.
I always have to go back to my Savvy Caregiver group leader J Jordan’s line, “When you meet someone with Alzheimer’s, you’ve met one person with Alzheimer’s.” Each person reacts differently to activities, people and routines. As caregivers, we often feel that routine rules above else, because it gives structure that is so important…until your relatives from Denmark arrive. Then you have to be flexible. After all, they wanted to go to Red Rocks. So, after a shorter than usual nap for my parents, we headed out on a grey afternoon.
There’s something about standing at the top of the Red Rocks Amphitheater that lifts your spirits. It’s been some time since my father has smiled like this…and had we stuck to their daily routine we would have missed this joy.
I was reminded how important it is to be flexible, to encourage, and to laugh. When my mother, who is closest to my father, is happy and more boisterous than usual, that only strengthens her in the hard work she faces 24/7 taking care of my father.
The next time an unexpected, or expected, visitor comes to call, and it throws up our routine, I will be more thoughtful in considering whether this event could bring joy to my father. And if so, let’s go for it.
They left for the Denver Art Museum this morning, without me. I can’t wait to hear their stories over dinner.
I am not alone. The Alzheimer’s Association reports those with Alzheimer’s survive, on average, for four to eight years after the diagnosis, but some live as long as 20 years. Over time, the disease takes its toll and caregiving becomes all-consuming. In the US, there are at least 15 million caregivers for someone with Alzheimer’s or a different type of dementia.
Angel Sighting…David Henson
The world lost a bright light on Saturday afternoon, and heaven is brighter now, with the passing of David Henson, an Angel with Shoes if there ever was one.
If you knew Dr. Henson, you have a story to tell, I’m sure, and probably more than one. He stepped into so many of our lives, as a friend, mentor, counselor, coach. He was Judy Henson’s best friend and devoted, hopelessly in love, husband of 26 + years; loving father to Kim, Stephanie, David and Chris.
He was my hero. For a portion of two years, while my own life was changing at a pace too rapid for me to handle, Dr. Henson was the one I turned to every week to be reassured, challenged, pushed and nurtured. As my counselor, he was able to look at me with those bright, blue, piercing eyes, and after hearing whatever I had to say, ask…”So, how’d that work for you?” His style of counseling for me was to dig to the core, deal, and move on. And after we moved on, our friendship grew.
Every day I now look at my husband, Art, I carry a piece of David with me. That’s because David and Judy introduced Art and me to each other, and were there with us through our courtship, engagement and marriage. They both know us in our pain and in our joy…and now we share Judy’s pain as she moves into this next step of her life, without the love of her life, David.
David had an effusive way of demonstrating his love for those he knew. He would hold your face and kiss you, and smile as he said, “how ARE you?” Admittedly, this was a bit alarming for my three sons, all taller than him, but they grew to endure his greeting…because they had no choice!
We had the privilege to celebrate David’s 75th birthday in February with family and friends…and despite his pain as a result of surgeries, chemo, you name it…he seemed so happy to be surrounded by people whose lives he had directly touched. He knew the next months would be a battle for him, but none of us realized what was in store.
On March 28th, he wrote:
Wanted you to know I’m scheduled for lung cancer surgery next Tuesday. The Thoracic doc will remove my lower left lung lobe, just like my grandfather, & I’ll be in the hospital for 7 to 10 days. I’m looking at about a 6 +/- week recovery & have to put my private practice on hold. I had a brain MRI & another chest x-ray last Monday & my ‘team’ of docs didn’t see any other cancer throughout my body.
Since 11/30/12, I’ve had about 4/5 CTs (various parts of my body), bladder cancer surgery, 6 chemo treatments (don’t have to go back for 3 months), 4/5 chest x-rays, PET scan of entire body, brain MRI, 2 teeth extractions & 2 posts (have 4 more extractions & 2 more posts on hold for now) & may have to have chemo-radiation post-surgery.
Having ‘dumped’ all of this on you all, I’m really doing rather well & have a good attitude. Judy continues to attend most doc appointments & all procedures; I call her ‘nurse Jane fuzzy wuzzy.’
I hope you all are doing well as we navigate “welcome to maturity” issues. I know some of you are &/or have had major health issues & would appreciate hearing from you. Love & hugs, Dave
Those are the last words I heard from David, because after April 5th, he never regained consciousness.
David walked among us all and touched us in ways we will cling to for the rest of our lives. Maybe we will recall his counsel, or his love, or his humor, or his kiss, or his Diet Coke, or his faith…maybe a combination of all of the above. Maybe you, like my husband and I, will ask, “What would David say?” And know exactly what that would be and take that course of action.
I stand here a better, stronger, healthier, more self-assured woman in large part because of the wisdom Dr. David Henson imparted to me in the time I knew him. I’m guessing, I’m not the only one.
David Henson, an Angel with Shoes on earth, now doesn’t need those shoes anymore.
The Accidental Caregiver…#9
This morning a cacophony of sounds and images invaded my father’s brain as he came upstairs with a string of things to do, places to go, people to see and not one of them seeming to relate to the other. I could hear my mother urging him to share his thoughts with me, “go and tell Lois what you’re talking about, she’ll know what to do,” as she wrestled with how to deal with his many requests.
Yesterday was a particularly ‘bright day’ for dad, as he engaged in conversation easily, went to the dentist, ate well and chatted about family members. He and my mother drove around with me for a series of errands, and we went to places that were new to him. This morning, remnants of the events from the day before clouded what he was trying to tell me.
I only had one key to get inside a friend’s house yesterday. Today, he ‘found’ that key overnight but needed to find it again and couldn’t. We were at this friend’s house because their piano had to be moved. Today, my father wanted to make sure all his belongings were being moved carefully, and asked for documentation to make certain that would happen. We spent a few hours at the dentist’s office, he pointed to his mouth, but couldn’t make out what he needed to tell me. Then he inserted a question for a rental car he had ‘ordered,’ and wanted to know if he could follow me on his walk.
We strive for ‘bright days’ for my father, where the connections in his brain allow him to communicate and remember some things and we have bits and pieces of conversation…but other days the tangles and plaques in my father’s brain take over, severing the links that on one day make sense and on the next leave him and everyone around him perplexed.
As these events unfolded this morning, I recalled “10 Communication Absolutes When Talking with People who have Dementia” I was given in the Alzheimer’s Association Savvy Caregivers class I took, and did my best to implement them. Among them, do not argue, instead agree; do not reason, instead divert. So I took my dad’s bag and set it down and told him I would make sure all his belongings were safe. I told him we didn’t need the key, that I had an extra one. I told him I would check on the status of the rental car, didn’t know what to say about his mouth, and then said he and my mother could walk on their own and I would be here when they got back. That seemed to relieve some of his stress and after he returned from the walk, he continued in his normal routine with no reference to these earlier discussions.
J Jordan, in our Savvy Caregivers class, encouraged us to imagine ourselves in a car with 10 screaming children, all demanding something different, and it’s our job to drive them somewhere. That, she says, is often what our loved ones with Alzheimer’s experience when they try to tell us a myriad of things that don’t appear to make sense. Because of the damage with the tangles and plaques in their brain, the connections are no longer taking place and they can’t make sense of everything that’s clamoring for their attention. It’s a war inside their head. Our job is to make them feel safe and secure. Period.
Just got a call from the dentist’s office where my dad went yesterday afternoon. Seems he left his partial there and they called to say they have it. “Did he miss it,” they ask? “Never mentioned a word,” I say…realizing when he pointed to his mouth this morning, he did know something was missing, he just didn’t know how to tell me. Well, we’re off to the dentist’s office to pick it up. And after a day of clouds and snow, it is sunny here. Maybe the rest of today will be ‘bright-er’ for my father.
I am not alone. Every 69 seconds, someone in the United States develops Alzheimer’s. Scientists are not absolutely sure what causes cell death and tissue loss in the Alzheimer’s brain, but plaques and tangles are prime suspects.
The Accidental Caregiver…#8
I was excited to share with you details of the new raised garden beds we planted over the weekend, all the vegetables that are now being carefully watered and watched, and the joy of my parents when they realized one of their favorites, cauliflower, is among the dozens of cool season vegetables now taking root. But as a consummate multi-tasker, I used a break to read an article my husband recommended in Bloomberg Businessweek by Peter Coy: “Alzheimer’s: The Costliest Killer.” We still finished up the garden, but my desire to share more about our leafy two inch starters has been thwarted because of the images I can’t shake off after reading, “A brain destroyed by Alzheimer’s disease looks like a shrunken, rotting cauliflower.”
Coy’s piece highlights the dreadfully low amount of research funds dedicated to Alzheimer’s, as he discusses a new RAND Corporation study released this month that finds “treating dementia of all kinds costs more than heart disease or cancer, more than 150-billion dollars a year in the US, including the value of informal care.” That informal care is what millions of caregivers are doing right now, as we speak.
The reason these numbers are so disheartening are because they don’t come from advocacy groups…this is an academic research effort outlining what we are all in store for as the cost of caring for people with dementia skyrockets. The RAND study finds 15 percent of people over the age of 71, some 3.8 million people, have dementia. And by 2040, that number will hit more than 9 million people. This hearkens to last year’s prediction by the World Health Organization that Alzheimer’s is a ‘public health priority.’
Generally speaking, I fall in the ‘cup half full to overflowing’ way of looking at life. I’m of the mind that how I view my world has a great deal of influence in how my world actually unfolds. Certainly there are things out of my control, but a positive, healthy attitude goes a very long way. That’s why I want to do as much together with my father, in the hopes that he has more ‘bright’ days than any others.
Yet as the cold, hard numbers stare me in the face…I also want to have my eyes open to the reality that there will be no medical breakthroughs unless lawmakers and researchers decide to make Alzheimer’s a priority. Having lived so much of my life in San Francisco, I can’t help thinking of Alzheimer’s as the new AIDS. I watched as too many good friends lost their lives battling HIV/AIDS, because at that time, there were no treatments that could save them. Granted, there is absolutely NO link between these diseases, except in the way they seem to be viewed from the outside. In the ‘80s, getting attention and funding for AIDS research seemed insurmountable were it not for the tireless work of advocacy groups and finally a breakthrough with lawmakers and researchers that totally changed how AIDS is treated and managed in the US and around the world. In my opinion, the same has to happen with Alzheimer’s, instead of leaving it pushed to the back burner.
A Home Instead Senior Care/Marist Poll, cited in Coy’s article, finds Alzheimer’s as the disease 44% of Americans named as being most afraid of having…that’s as many as cancer and stroke combined. Am I concerned? Absolutely. As far as we know, Alzheimer’s is 100% fatal. Still, there are rays of hope even at this ‘back burner’ stage, and there’s no doubt this RAND study will push the conversation out in front, where it must be for change to occur.
While I won’t be able to erase the image of what my father’s brain looks like in my mind, we will harvest all our vegetables, even the cauliflower, with a sense of delight that what we planted took root and grew with our care. And it is my hope that as we continue to plant and sow gardens for years to come, our children and future generations will not continue to be most afraid of having Alzheimer’s.
I am not alone. Alzheimer’s is a public health crisis requiring urgent global attention and action. The global cost of Alzheimer’s and dementia consumes one percent of the global Gross Domestic Product.
The Accidental Caregiver…#7
Suspenders. My father has decided he would like to wear suspenders, so we will be buying some today for him. That notion hit him while we are doing other things and suddenly became the most important thing in the world. For anyone passing us as we drove in the car, they might have been amused at what appeared to be a game of charades we were playing. My father was trying to explain what he needed to have by crossing himself in the front and over his shoulders with huge gestures. Since this came out of the blue, for us, my mother and I had no idea what exactly he wanted.
“A seat belt, that crosses over your shoulder?” I asked.
“No, “ my father said reaching over his head, “it’s more comfortable and like an ‘X’ and you wear it.”
From the back seat my mother chimed in, “is it hard or soft?”
“I don’t know, everyone wears them,” said my dad.
As I pondered the variety of strange objects he could be considering, somehow, suspenders did pop into my mind.
Pleased with myself, I burst out, “Suspenders!”
“No. They don’t suspend you,” my father said, going back into his physical description, crossing himself once again.
But by now my mother and I realize this IS what my father is looking for, so we begin our own charades to describe how they’re worn and what they do…and that the word for them is suspenders.
“Yes, I told you I need that big ‘X’,” sighs my father, “where can we find it?”
Every day there are moments like this one where we think we are having a conversation, but the words that my dad needs to get his point across simply don’t fire. I have my own moments like this…where a word escapes me…but I know very well it is not the same. And yet, when these moments hit with my dad, I want to do whatever I can to prevent this disease from affecting more people, if at all possible.
Last week, I signed up to be part of the Alzheimer’s Prevention Registry. There are some 36 million people around the world who live with dementia…either as a caregiver, friend or family member or maybe one who has the disease. From all the research out there, the numbers point to 115 million people likely to be impacted by 2050. The big frustration for us all in this camp is that there is no solid data to support ANY lifestyle changes to prevent Alzheimer’s. That’s because as far as we know, the disease is a combination of heredity, age and our environment. This registry is working with scientists who are doing the tough research to make an impact on Alzheimer’s.
There are a number of trials, right now only in the planning stages, that will hopefully take place later this year and next year. These are targeting people most likely to get Alzheimer’s within the next five years. The studies want people who carry rare genetic mutations that cause Alzheimer’s to hit early in life. Others will screen folks to find a common gene that predisposes one to the disease or signs of plaques in the brain.
You might read this and wonder why anyone would want to know…now…that this could be in your future. I would hope that with such research, more potential prevention medicines could be tested and used successfully. The more who decide to jump in and help, the faster we hope to arrive at a treatment that delays Alzheimer’s or prevents it entirely.
While I’m not a fatalist, I also know that my father’s condition will not change. In his world, there are ‘bright days,’ and others filled with varying degrees of confusion throughout the day. Our goal is for him to experience more ‘bright days’ and my mother and I are convinced that the more we tackle as a team, the better he seems to feel.
So, now that we know that my dad has determined he needs suspenders, we’re off to the store this afternoon in search of the best pair. Who are we to question why a big ‘X’ will make a difference? He thinks it will, and for today, that’s all that matters.
I am not alone. If you’re interested in learning more about any of these trials, or just want to know the latest information that’s out there, consider joining the Alzheimer’s Prevention Registry by going to https://registry.endalznow.org/
The Accidental Caregiver…#6
My mother jokes that she and my father have a game they play every day called ‘lost and found.’ It seems like just a few months ago, trying to find misplaced items used to stress them both out, but that’s changed. They now see it as a game, and spend minutes, hours, sometimes even days and weeks trying to figure out where something is ‘hiding.’
“Where are my sunglasses?” my father asked this morning as they prepared to head out for their walk.
“You must have left them in Lois’ car,” my mother replies.
Hearing my name, I jump in, “but we didn’t go anywhere in the car yesterday, and I believe you had your glasses on yesterday afternoon.”
Without missing a beat, “thank goodness it’s cloudy,” my mother says to my father, “you don’t need them today.” Brilliant move.
A few hours later, I see my mother in the kitchen and she informs me my father found an envelope with cash inside, tucked under their mattress. She has no idea how it got there, surmising my father was trying to put it somewhere for safekeeping and just now discovered it. The search for his sunglasses still hasn’t resulted in finding that item, “but I did find another pair of his, so we’ll be fine.”
Last week, we had our favorite Chinese food from Peter’s Chinese in Denver’s Congress Park, and the fortune my father opened is pinned on my bulletin board:
He laughed so hard when he read it, pointing out that this gives him plenty of time to find anything he misplaces. On that day it was his pen that had gone missing. He found that pen two days later, under the sofa.
In a great online resource, www.dementiaguide.com, I’m reminded that when healthy people misplace or lose an object…we are able to go into the past to have an idea of when we last used it or where we put it. While that doesn’t always mean we’ll find the object, we have mental tools that do assist us. People with memory problems don’t have this ability. That’s because as more and more neurological pathways are damaged, recalling sequence is very challenging. My dad might be able to remember using his sunglasses, but he has no recollection of where he might have placed them. The goal for us caregivers is to try to make sure those we care about don’t get frustrated in their search for missing items, because if they do they might think someone else hid it or stole it and then become suspicious of people around them. When someone gets that frustrated and/or suspicious, they have no idea how to even go about looking for that missing thing.
I am so blessed. The way my parents find humor in losing possessions, and make a game out of finding them, reminds me to not be so hard on myself right now as I simply cannot remember where I stored some very important papers. I know I re-filed them when I reorganized my office, and for whatever reason, their whereabouts remain unknown to me even now. This, by the way, gives my mother great pleasure. “See, it’s not only us that can’t find what we’re looking for!” she smiles. Giving up on relocating them isn’t an option either, so I will be diligent, but maybe I need to just go back to that fortune in my dad’s fortune cookie and rest assured that my lost possession will be found…within the month.
I am not alone. In chronicling the physical changes in memory and language, The Dementia Guide says some common signs of misplacing or losing objects include: frequently misplaces common items, like glasses; wanders off with items and leaves them in uncommon places, like under the mattress; puts things away in the wrong place; always looking for something; forgets what is lost while they are looking for an item.
The Accidental Caregiver…#5
I grew up hearing worms eat their way through eggshells, orange rinds, coffee grounds, apple peels and wilted lettuce right outside my window. They make a humming sound that would lull me to sleep. My parents always had an impressive garden, and keeping it nurtured was critical for the best vegetables and fruit trees….hence the compost. Here in Denver, we have yet to establish a compost heap, but we have assembled two large garden planters where we plan to grow vegetables of all sorts.
My father loves to be in the garden. Two years into his Alzheimer’s diagnosis, he is still able to do tasks that require no instructions….so that leaves a lot! He can rake, pull weeds and sweep with abandon. After we planted dozens and dozens of bulbs last fall, we reminisced about the garden he and my mother used to have in their backyard in Modesto, CA. They had wonderful vegetables and stunning fruit trees and would even dry their own apricots and grapes on the roof of our house. That’s when our own garden talks began and we came up with a plan together to plant tomatoes, peppers, beans, cucumbers, squash, lettuce and all sorts of herbs. My father and I have scoured the Williams and Sonoma ‘beginner’s vegetable garden’ for ideas and our excitement grew as we found some amazing planters online and dreamt about what our garden would look like. When the wood arrived, my husband and I assembled the planters and we are now just waiting for the snow to stop in Colorado…which appears to be a few weeks off still!
Anticipation is a brilliant concept, essential for me in my life, and very important for my parents. Aging doesn’t change that. Having something to look forward to, to watch grow in real time, is pretty awesome. There are so many great resources online, and one of the newest finds for me is the Alzheimer’s Reading Room, where Bob DeMarco today wrote an awesome article about how those we care for are capable of much more than we can imagine. And the more we do together, the more we become a team.
I suppose in the end that’s why we chose to have my parents live with us…so we could do things together whenever possible. My son just completed a busy high school varsity basketball schedule, and at nearly every game, my parents were there to cheer him on. Walking up the bleachers to take their seats was an ordeal every time, but those in the stands would gladly hold out their hands to support either of them if needed. Other parents and grandparents and supporters came to recognize my parents and smiled as they took their time with their seats and pillows and jackets and snacks. My father cheered pretty much every time either team made a basket, because it was hard for him to track which team his grandson was on. After all, wasn’t the basket the point? And when the game ended as we waited for the team to get back on the court, he often turned to us, “When’s the game going to start? It’s going to be a late one tonight.” And then he would see his grandson and congratulate him on a good game and take my mother’s hand as we all walked out of the gym to go home.
The anticipation of what we all get to do together this spring and summer brings me joy. Bob DeMarco’s article ends on a powerful note. “Alzheimer’s caregiving is a good example of how life works. The more you put into it, the more you get back. Or, you can just sit back and let the disease run its course.”
As we drove home from my parent’s Monday morning croquet game with the group Jiminy Wicket, my father looked out the car window, observing the snowfall, “Guess we’ll have to wait to plant until the snow stops.”
“Yeah, that’s a good idea,” I respond.
“What’s the temperature?”
“Good thing we took our walk already,” he continues, “I think we’ll skip this afternoon.”
“Sounds like a plan.”
We do have a plan…and now in addition to the garden, I’m thinking the compost heap is a must. After all, I didn’t realize how much those humming worms brought back fond memories…
I am not alone. The number of caregivers for someone with Alzheimer’s or a different type of dementia is about 15 million. If we were all in one state, it would be the fifth largest state. As Alzheimer’s progresses, your relationship with your loved one will change as you have to take on a new role. Be prepared. The Alzheimer’s Association recommends you locate financial and legal documents, turn to family, friends, professionals or community resources for assistance, as needed.
The Accidental Caregiver…#4
Cheerleaders often get a bad rap. By definition, cheerleading is an intense physical activity based on organized routines, containing elements of tumbling, dance, jumps, cheer and stunting…in order to direct spectators of events to cheer for sports teams at games. I tried out for cheerleader at Beyer High School in Modesto. I didn’t make it. Instead, I was one of the mascots (a patriot) my senior year. No, I’m not showing you the picture. Yes, we wore tri-cornered hats. At Biola University, I actually did make it on the cheerleading squad, and had a partner, Nob, who would catch me in various stunts and routines. Since I love sports, being at an event where it was okay to yell loudly and jump up and down, and not get asked to sit down by the person behind me, was thrilling. I consider encouraging others to cheer on their team a noble act. And if you’re a caregiver, having a cheerleader or a whole squad of cheerleaders is awesome.
For most of us, caregiving is not a solo enterprise. (I know some of you are out there on your own, with no other living relative in earshot, carrying the full load. That must be tough.) In our household, I am not alone on this journey. We’re part of the ‘sandwich generation’ with a high school senior, my husband, and parents. We each have a role in the dynamics of how the house runs, and our cooperation is critical to having everything flow smoothly. But above all else, my husband, Art, is the one who stands by my side and hears all my chatter, and loves me thoroughly no matter how sad or elated or confused I am with various incidents that beg the question, “What am I doing?'”
Each of us as caregivers needs an ‘Art,’ a head cheerleader on our team who is supportive and will listen and gets it that this season of life is important for a reason, and cheers us on in our role. I’m fortunate, I have a whole team of cheerleaders, too: four amazing brothers and their wives, one amazing sister and her husband, a super involved aunt, great extended family, incredible girl friends, colleagues and people in organizations on which I can lean…and every one of these people steps in, calls, encourages, uplifts and challenges me at just the right moment. My head cheerleader, though, is in the thick of it with me, participating at each turn with a nudge or a push or a hug.
I need that. Speaking for my caregiving contemporaries, we don’t always tell others how hard it was to watch our loved one get lost, in the kitchen; or be unable to find their watch, on their wrist; or wonder why they no longer have their ID or credit cards in their wallets. We move at warped speed sometimes, doing what is necessary to alleviate any embarrassing moments, and when the dust settles at the end of the day, the weight of what we’ve witnessed feels like it might crush us.
Art and I went to Costa Rica last month and discovered the spectacular hot springs around Arenal Volcano. Soaking in a 104-degree natural pool at Tabacon turned out to be a rejuvenating gift. My cheerleader listened as I poured out how all of the changes that we’re encountering both excited and scared me to death. He didn’t shy away from the mundane matters I get trapped in as we explored different ways to deal with events that would make it easier for all involved. This sharing of such an intimate, trying matter with my cheerleader is a major change for me.
When I say I’m accustomed to change in my life..that would be an understatement. Anyone who knows me knows to keep my address in pencil…that’s because during the past 12 years I have moved so many times I have stopped counting. We moved into our home in Denver in June saying “THIS is it.” The boys just laughed, “whatever, mom.” While it’s not always been easy, they’ve come to understand the positive elements of change, and how we have become so much more adaptable. I used to envy those I know who’ve lived in one place…for their entire children’s lives. I’m still happy for them, just no longer envious. Our path is different, winding, full of detours and roadblocks and we’ve become stronger with every turn.
I hope you find your cheerleader, who joins you along that path and decides this course is one you can both take together. Much of my day does not involve direct interaction with a cheering squad…but when I get time to breathe, cook, unwind, take a walk, chat…I love re-connecting with Art and the rest of my cheerleading team who will catch me when I jump or cheer me on to go for the goal. Thank you each and every one.
I am not alone. Fortunately, there are many resources for caregivers and lots of tips for reducing stress. They include staying in touch with family and friends, identify what you can and cannot change, set realistic goals, make time each week to do something you want to do, try to find time to be physically active, and try to keep your sense of humor.
The Accidental Caregiver…#3
When you live with someone who has Alzheimer’s…and that person is your parent…there’s an inevitable thought in your head. Sometimes this thought strikes unexpectedly, other times you spend hours scouring the internet for information. “How likely am I to get Alzheimer’s?” Especially when it’s not just your parents with this disease. My father’s father had Alzheimer’s and my mother’s mother had Alzheimer’s. My chances? The numbers vary from site to site, so I went to my trusted Savvy Caregiver’s class handbook, to read that only a small percentage of cases (2-4%) of Alzheimer’s can be thought of as being strongly hereditary. Those with one parent who had the disease have a three times greater risk of the disease than those with no first-degree relative with it. Since the chance of getting the disease for the general population is only 1% at 65 and 2-3% at 85, those odds for me aren’t that much greater.
Still…since I have Alzheimer’s in my sights, I thought it would be a great idea to take part in any clinical trials available for someone my age and in my position as a caregiver. I got a call from the Alzheimer’s Association from a wonderful woman, Katie, who sent me a list of trials I can choose to participate in…or not.
Today I pulled out all of the paperwork and examined six different trials in which I could choose to engage. Some are online, some involve being interviewed and some ask for physical participation at a hospital or medical facility. I decided to jump in today with an online survey that focused on the changes in the levels of stress encountered by caregivers. For many who choose to take care of a loved one with Alzheimer’s there are significant changes in health behaviors…specifically overeating. What I really liked about engaging in the questions about my stress levels and eating habits is that the results will help advance the field by helping to understand the impact that stressors have on health and risk for obesity among Alzheimer’s family caregivers.
For me, because it’s challenging to quantify how my role makes a real difference for my parents, contributing this information actually gives me a sense of meaning, as researchers try to grasp the full scope of this disease with no cure. I know I’m part of the tsunami known as Alzheimer’s. I’m not sure where I am in this wave, but as we all continue to age, the likelihood of knowing or being related to someone with Alzheimer’s increases with every year…and I want to be as prepared as possible. We still don’t know what causes this disease, so if I can be on the cutting edge of getting and disseminating that information, it would be a privilege.
Many of the questions I answered today remind me of what my father has lost to this disease. When it comes to tasks, independence, finances, mobility, decision making…his mind is literally disintegrating. My mother and I are here to stem some of that loss by making him feel as secure and comfortable and safe as possible, even as he realizes things are not the same.
Worrying about whether I’m next in line for Alzheimer’s will do me no good as I forge ahead in this endeavor. Giving researchers the tools to better understand the causes and someday be able to treat this disease, that’s an exercise I welcome with open arms.
I am not alone. For many, caring for a loved one with Alzheimer’s can be stressful. Here are ten symptoms of caregiver stress: Denial, Anger, Social Withdrawal, Anxiety, Depression, Exhaustion, Sleeplessness, Irritability, Lack of Concentration, Health Problems. If you’re feeling stressed, call the Alzheimer’s Association 24/7 Helpline: 800-272-3900.
The Accidental Caregiver…#2
Stubborn. I’ve always known I was genetically programmed with this trait from my earliest hours of life. Coming from a strong Calvinistic background, I attributed this character flaw to some sort of predetermined course, an assignment I could not refuse. Not true, by the way. I know it’s the DNA I inherited from my parents.
This morning after my husband and I walked our dogs and slid all over the snow plowed sidewalk, we hurried home while trying to keep from losing our balance, to warn my mother and father that maybe this isn’t the best morning to take their walk. Every morning and late afternoon, my parents set out from our home and walk about a mile around a park alone, one of the last forms of independence they can exert. They are highly attuned to weather reports, so blasting snow, pouring rain and strong winds usually call for a rain check on the walk…until the elements clear. So imagine our surprise when we walk in to find them with coats on, hats and scarves in place, and pulling on their gloves. “Mom,” I plead, “please be careful on the sidewalk that appears to be cleared, it’s totally icy.” No response, so I continue, “maybe you both could wait a few hours to see if some of the ice melts.”
As my mother opens the front door to survey the sidewalk, she turns to us, “We heard the cars sliding out there, we know it’s icy. We’ll be careful to avoid the icy spots. Don’t worry.” At that moment, I flash to a conversation I just had with my husband about his dear friend, 93 years old, who slipped and fell last week when a dog jumped on her and she is now suffering the effects of a stroke because of how she hit her head. I’m not ready to give in. “Whatever you do, don’t go on the ice…it’s like glass, I promise. Can’t you wait?”
Oops. This was my mistake. When my parents first moved in with us, I was invited to take a “Savvy Caregivers” class offered by the Alzheimer’s Association. You’ll hear me refer time and again to the most awesome instructor, Jay Jordan, who told us on day one: “No questions. Stop asking questions of your loved one, it only muddies the water. Help them make choices, don’t ask questions.” Because of the change in brain activity in a person with Alzheimer’s, the simple act of posing a question can send them into a challenging place, causing confusion and frustration. But asking me to stop asking questions…with all of my adult years spent doing just that professionally…was akin to telling me to stop breathing. It was so hard, at first. I would find myself biting my tongue constantly. Often in class I would proudly explain how we were doing so well as a new blended family and how I had done this or that…but Jay would catch me asking a question of my father and nix my enthusiasm. As always in these matters, Jay was right on. Once I stopped asking questions, and offered suggestions or made the choices, everyone could relax. Even though my mother does not have Alzheimer’s, the rule also applies to her. So in that moment, with her standing at the door, I knew I lost the battle.
My mother smiled as she took my father’s hand and walked out the front door. “We’ll just walk back and forth on the sidewalk where it isn’t icy,” she says and closes the door. And off they go. For twenty minutes…walking up and down our street avoiding the icy spots. They return smiling, invigorated, and ready to tackle the day.
As Jay Jordan says over and over, “When you meet a person with Alzheimer’s, you’ve met one person with Alzheimer’s.” How we deal with our loved ones varies from family to family. My story may be similar or different from your story, that isn’t the point. I’d like to share the steps I’ve taken over the past eight months and let you know what works and what doesn’t work for us.
I just returned from the gym to see that most of the ice on the sidewalks in our neighborhood has melted. My mother is waiting for me in the kitchen with a computer issue she’d like help with. After we tackle her password and unlock the caps key, all is well. Then she looks outside. “Well,” she says, “the snow has completely melted…on the sidewalk, anyway. I knew it would melt. We’ll go out again, and this time we’ll go to the park.”
Of course they will. Stubborn.
I am not alone. In a study by MetLife, the average age of an Alzheimer’s care recipient is 79. The average age of spousal caregivers is 75, compared to 51 for caregiving children. Almost three-fifths of each caregiver group is female. About half of caregivers are college graduates or hold higher degrees. This is part of a series of posts I am writing as I explore the life changes I’m encountering embarking on an unexpected journey.
The Accidental Caregiver…#1
Finally getting away, alone, with my husband of 14 months I reflect on our whirlwind year. I am catching my breath as we sit down for a nearly five-hour flight, sinking back into the airplane seat and smiling. The flight attendant hands out some documents to fill out before we enter Costa Rica, and I decide I might as well get this out of the way so I can just relax. As I fill out the document, I freeze, then simultaneously experience a full head to toe hot flash that leaves me panting, and I can’t figure out what to do to alleviate the cold/hot reaction that is playing havoc with my body. “List your occupation,” the document reads.
For the past 33 years, this has been easy: Broadcast Journalist. But eight months ago, everything changed. I left a vibrant morning news anchor position in Houston, TX to return to Denver, CO and set up house with my new husband, whatever kids in our blended family wanted to join us, and…oh yes…my parents. I’m the oldest of six siblings, and a daughter to boot, and my father is in middle stage Alzheimer’s. My mother, bless her heart, watches over him every single minute…but the last thing she wanted was to be separated from her husband of 54 years. Aside from the devastating toll of Alzheimer’s disease, which has taken away much of my father’s ability to find his way, anywhere, his health is good. My mother’s health is strong, too. But they can no longer take care of the broader, basic elements of life. So when my husband said, “Honey, why don’t we have them live with us, in our basement?” My response was, “Fine, we can make this work.” Our decision also put us in another category, the ‘sandwich generation,’ as our youngest in the home is finishing up his senior year of high school. I’m fairly matter of fact about life and change; let’s just say I’ve had lots of practice.
So…how was I to know this change would have my head spinning, and hot flashes in high gear, as I stared at the document to enter Costa Rica that asks me to “list your occupation.” I would love to tell you that my profession doesn’t define me, and I would be lying. That’s what hit me with a ton of bricks as I stared at the empty category, wondering “Who have I become?” You see, as soon as everyone was settled in our home last summer, I launched ‘Angels with Shoes,’ a website that shares online stories of people who make a difference in the lives of others. I’m not known for sitting still, and I was determined to explore what it would be like to chart my own path and fill this site with video, audio and written stories connecting givers and receivers. But, I paused again, is this website my occupation? Web host? Blogger? Storyteller? Writer? What about how I frame my day around doctor’s appointments, croquet, grocery shopping, haircuts, laundry…all involving my parents? Am I…a…caregiver? Me? Couldn’t I, shouldn’t I, hire someone else to do that? After all, I have 33 years in broadcasting under my belt…should I not be contributing to society in this way? My oldest son even remarked to me last week, “Mom, you never stayed home with us when we were young, and now you’re staying home with your parents.” No, I didn’t stay at home with my boys, how many discussions did I have over that issue with friends who made that decision? But the truth is, I never could have gone back to work after each of my sons was born if it wasn’t for my parents. They came to live in a flat underneath ours in San Francisco, and took care of each of the boys, while I worked. So now…it seems like I’m living on the other side of the circle…where I am staying home to take care of them.
Still, I couldn’t bring myself to write down ‘caregiver’ in the category that remained blank and now seemed to take up the whole page. Only minutes into this alone time with my husband and I was wrestling with an issue that would begin to gel and form over the coming weeks. Had we known any of this when we booked our hotel on Lake Arenal…in view of the Arenal Volcano… one of the last active volcanoes in Costa Rica?
“Writer,” I list my occupation, then stuff the document in my passport and close my eyes. But sleep wouldn’t come easily. I had now tapped into a piece of myself that I could not put back into place. With eyes wide open I created a massive shift in how I live my life, and until that document asked me to list my occupation, I hadn’t realized how deeply I identified with my old self, and really had no idea what to do with my new self. Am I a caregiver? Yes. But it’s hard to get those words out.
(to be continued…)
I am not alone. At this very moment, there are more than 15 million of us caring for a family member with Alzheimer’s…and according to the Alzheimer’s Association…combined we provide 17.5 billion hours of unpaid care to those with Alzheimer’s and other dementias. Who are we? I’m trying to figure that out…and this is the first in a series of posts I’m writing as I explore the life changes I’m encountering embarking on an unexpected journey.
What a Way to Start the Week!
This past week, a friend has died, another has undergone serious surgery and is in ICU, another has been diagnosed with ALS. I am reeling with all sorts of emotions, and this post by Marc and Angel reminds me to live life to the fullest every day. Enjoy!
Apple Care: Angel Sighting
In this Angel Sighting, Lois catches someone doing something beyond the call of duty, in an hour plus phone call with an Apple Care rep who fixes a myriad of iPhone5 issues for her. Have you caught someone in the act, lately? Let me know!
March Madness and my brackets
Every year at this time, there’s an air of excitement in our household…maybe it’s just in my mind, though.
You see, I’m the mother of three sons, the youngest preparing to graduate from high school, and all three play basketball. My husband is a college basketball nut and couch coach. Really. I’ve always wanted to feel like I’m part of the hoopla surrounding March Madness, and the best way to do that is to put together my bracket. Also, since this will dominate what we watch for the next three weeks, might as well just join them, right?
It’s true, none of them seem to care or comment about the NCAA Tournament Bracket I somehow manage to configure…and if I dare to do better than any of them along the way, it’s “pure luck, mom, that’s all.” True dat, what else could it be? I do check on each team’s record to date, and try to seize on which ones are exceptionally hot at the moment, but in the end, there is some pretty wild guessing on my part. No, I’m not like one of my colleagues, a sports announcer no less, who picks his teams based on the mascots…even though I’m tempted to do that one year.
So, I’ll be at it this morning, selecting my picks, and bookmarking my choices so I can check them several times a day as the tournament progresses.
In case you haven’t done so, here’s a 2013 Printable NCAA Bracket, courtesy of Sports Illustrated.If I’m brave, maybe I’ll post my bracket at some point. Or not.
Living with Joy
Now this is a book, Until I Say Good-Bye, I have to pick up tomorrow.
Having known someone very dear to me, Sally Hart, who died of ALS more than 10 years ago, this story written by Susan Spencer-Wendel, wife and mother of three, is inspiring me in this USA Today post alone.
She writes that if she’s learned a lesson…it’s to have no expectations. “Accept the life that comes. Work and strive, but accept. Don’t force the world to be the one you dream. The reality is better.”
Until I Say Good-Bye goes on sale tomorrow.
The Other Face of Alzheimer’s
The Alzheimer’s Association held their annual luncheon in Denver yesterday, and it was an awesome display of encouragement, solid support, frustration at the toll the disease is taking, and a push to keep strong to fight the fight against this disease.
At the Savvy Caregiving class my friend and table host JJ Jordan taught, one mantra remains strong: “When you meet a person with Alzheimer’s, you’ve met one person with Alzheimer’s.” Because challenging as that may be, no two people display the exact same symptoms or reactions, so how we as caregivers deal with our loved ones with Alzheimer’s remains totally unique.
For most of my father’s 83 years, his opinions on faith, politics, lifestyle, clothing choices, attitudes has been strong. I learned long ago to stay away from any of those conversations with him, because there would be no discussion, only frustration for all involved. Last night, our conversation over the dinner table was about the zachtar (a middle eastern seasoning of oregano and sesame) we were using with olive oil in which we dipped our bread. Earlier in the day, as we were outside, we discussed the type of garden we are preparing to plant. The day before, he enjoyed playing croquet with Jiminy Wicket at a church in Washington Park. (In fact here he is on Angel Sighting: Jiminy Wicket ) All to say that while Alzheimer’s has robbed him of his independence, he is a kind, gentle person who smiles at everyone he meets and when doing what he loves best, eating, he can talk about everything. My mother constantly reminds me she is blessed to share this time with him and never complains about how their roles have completely changed. We understand we have to make the best of a tough situation and do what we can to face every day with energy and a positive outlook.
At the Alzheimer’s Association luncheon, I was motivated to join the ranks of folks who want to work with our scientists and lawmakers to find ways to prevent this disease. I look forward to how this activism will shape my life.
While my father’s critical side has now been quashed by Alzheimer’s, his core remains strong. After every croquet game, when someone bids him farewell and says they’ll see him next week, my father smiles and says, “Lord willing.”
Around the world with a yoyo, John Madden and Al Hart