The caregiving for my Uncle fell upon my mother. He did not want the family to provide hands-on care, so he made sure to have a live-in home health aide. The logistical and legal aspects of care and his estate were still significant.
After his passing, I went with my mother to help clear out the home he’d lived in for over 25 years.
His home was always meticulous, so it was odd to see things that didn’t belong.
The TV captures his personality so well.
Even retirement communities don’t design space for mobility devices.
You can die at home, but rarely in your own bed.
Meticulously kept records of his daily status.
My uncle was a very frugal man. These pencil stubs made us all laugh.
I suspect these ingredients are left from before my Aunt died…when I was in elementary school.
Over the past few years, my family has been involved with my grandmother’s battle with Alzheimer’s. I painted this portrait as a representation of her decline.
Nancy Jane, 2015
Oil on Canvas
16 x 20 in.
Madison Luetge graduated from Texas A&M University-Commerce in December, 2015, with a Bachelor of Fine Art degree in Studio Art with an emphasis in painting. She has been accepted into the University of Houston’s Master of Fine Art program and will begin in the Fall of 2016. Her work is primarily two dimensional, focusing on painting and drawing. Currently, she is residing in Bellville,TX.
Every caregiver is unique — we want to show the world what caregiving means. Send us your favorite photo of yourself, a selfie, or a photo that shows what caregiving means to you and we’ll share it with the world.
Ediccia wanted to be remembered as someone who didn’t give up. Chuck said some of his favorite times were playing baseball with his brothers. Joe said he was the luckiest man in the world.
Abel summed it up this way: “You have a one-way ticket. Don’t waste it!”
They were all nearing death. Some were old, some young. In interviews with Los Angeles artist Andrew George, they shared their biggest regrets, favorite memories and greatest loves.
George set out to photograph and interview people who were dying and at peace with it. He called several local hospices and hospitals to ask for their help finding patients. They all said no.
Finally, Dr. Marwa Kilani, medical director of palliative care at Providence Holy Cross Medical Center in Mission Hills, agreed to collaborate. Whenever she found a patient willing to participate, George headed to the hospital.
He didn’t want to know the patients’ last names, their professions or their diseases. He wanted to know their perspective on their lives, their dreams and their deaths. In addition to asking them questions, he gave each a piece of paper to draw or write whatever they wanted.
The recurrent themes were not surprising. Many talked about gratitude, family, relationships.
And, of course, love.
One man, Jack, confessed that his true love wasn’t his wife, but rather a woman he’d met in Japan in the 1940s who had been sent to a relocation camp. Another, Donald, said he still loved his ex-wife, even though she had married another man.
Sara described the protective power of love: “You can take anything that’s dished out because there’s someone who cares for you.”
George said he was drawn to the project, which he named “Right, Before I Die,” because he wanted people to see death a different way. “This is something people have a tremendous aversion to,” he said. “I wanted to make something provocative … [that] made people pause and addled their brains a little bit.”
If people could diminish their fear of death while young and healthy, he said, they might be able to live more fulfilling lives. George also hopes people will learn from his subjects, who have made sense of the ups and downs in their lives.
The images and words of the 20 people in George’s exhibit — all but one of whom have since died — are on display at the Museum of Tolerance through Oct. 11. Before coming to L.A., the exhibit was at Musea Brugge in Belgium and the Grace Cathedral in San Francisco.
The framed photos hang beneath large windows just inside the entrance to the museum. Beneath each photo are excerpts from the interviews and the subjects’ own handwritten words.
Many of the photos show people in hospital beds. Some have lost their hair or are attached to oxygen tubes. Stuffed animals and flowers sit beside them. Next to one man is a small framed photo of himself as a child.
In the middle of the exhibit is a tall mirror attached to the wall. George said he wants viewers to reflect on the same topics the subjects did, including their own mortality.
The exhibit is sponsored by the Providence Institute for Human Caring, which works to improve end-of-life care for patients and families. Ira Byock, chief medical officer of the institute, said the photographs and interviews invite people to think about living with illness — and about the dying process.
In Los Angeles and across the nation, Byock said, people often don’t die the way they wish.
“You can get the best care for your cancer or heart failure or liver failure,” he said. “And then in the last months, weeks, days of life, you are at high-risk of dying badly, or having a medicalized death experience.”
One of the subjects in the exhibit was Josefina Lopez Aguilar. In her photo, she’s wearing light lipstick, small hoop earrings, and a sagacious smile.
During her interview, Lopez told the artist she wasn’t afraid of dying, that life was simply the “waiting room to death.”
“I feel calm, at ease, because I already know I am going,” she said. “So every night I tell God, ‘You know what you are doing.’”
Lopez died last year at the age of 105, her granddaughter, Claudia Maldonado, said.
Maldonado said her grandmother had been an orphan and had a tough upbringing in Mexico before immigrating to the U.S. and helping raise her grandchildren. She loved to sew, read Spanish-language newspapers and cook elaborate meals for her family.
Maldonado said that when she first heard about George’s project, she and her family were a little skeptical. But then they realized that Lopez would live on through her photograph.
“It’s an honor to her,” she said. “That smile will always be there.”
Having lost a grandfather to Alzheimer’s years ago and witnessing my grandmother’s role as a caregiver become more and more necessary during his progression, I was inspired to write a piece from the viewpoint of a caregiver.
Our hope is that the song can shine a bit of light onto the love, hope, and resiliency of those people who are carers. There is such a commitment and promise that caregivers often make, and often they are the unsung heroes. We wanted to let their voices “SING” a bit, and we hope this song can help to do that, while also raising funds to aid in the fight.
It’s sung by West End actress Gloria Onitiri, and we’ve partnered with The Alzheimer’s Society to release it as a charity single, with all proceeds going to them.
The single is available to download via all major online stores including iTunes, Google Play and Amazon. A JustGiving page has also been set up to collect donations from anyone who enjoys the song and would like to give more to support the important work of Alzheimer’s Society.
Barry Anderson & Mark Petty are a transatlantic songwriting team. Their songbook album You Are Home is available worldwide on iTunes and Amazon and they are currently working on a song-cycle, a musical and writing new holiday material for concerts this Christmas in New York and London. They have recently had concerts of their work at The St. James’s Studio in London and at 54 Below in New York which featured a host of Broadway and West End performers. Barry is also currently performing as Bob Crewe in the US 2nd National Tour of Jersey Boys, and previous credits include Legally Blonde (Aaron Schultz) on Broadway, National Tours of Legally Blonde and My Fair Lady, and T.V. appearances on “30 Rock,” & “As The World Turns”. Mark also writes for mainstream pop, rock and country artists, and collaborates with other composers, most recently the Hungarian composer Sylvester Levay (Elisabeth, Rebecca, Marie Antoinette, Mozart), US composer Bobby Cronin on his original musical comedy The Concrete Jungle, and US composer Michael Patrick Walker (AltarBoyz, Dog & Pony).
Over the past year, I have been working with the residents of a senior-living healthcare facility, which has sparked my interest in the process of dementia, a progressive, deterioration of cognitive function. I have watched this disease limit communication, activate a sense of perplexity, and devour identity. I have also observed signs of memory retrieval from residents by reminiscing through photography. These encounters not only made me alert to the fragility of the memory, but motivated to help people suffering from memory loss build recollection and familiarity of the past. I have formulated a series of paintings based on my experience.
Yuko Kirino – our second artist in our Caregiving Artists series – hails all the way from Japan. I happened across @kirino.y_illustration when browsing Alzheimer’s-related pictures that we could share with our community.
Yuko’s Instagram account is a fun follow, featuring a different illustration each day of the main character in her story – a cat. Hearing the artist’s story behind why she created “The Cat Story” is even more inspirational:
We found out my father had Alzheimer’s during autumn of last year. Daily nursing is serious work – both physically and mentally. I remembered my father liked my drawing, so I started to draw. I hope my family and those around us can take time to look, relax and have a calm moment with my casual drawings.
This is my favorite painting. It is titled After the Storm. It did not load to a resolution that is clean and sharp, but it is one of my works I did when the feeling in my fingertips began to return. I certainly had been through a storm in life. First I grew up in a home where verbal and physical abuse was the norm, not the exception. Then I started working in occupations that involved toxic chemicals and at times I was in dangerous construction jobs. As if that were not enough, my ancestors had a history of extreme blood pressure. That medical issue can and did trigger strokes in my mid-twenties and into my thirties that caused me to become very familiar with doctors and specialists.
It seemed like I was always watching other guys my age working in cherry jobs, making money and establishing careers while I struggled to find finances to buy meds for heart and blood pressure and keep the utilities on and the rent paid. I developed an affinity for people with chronic illnesses. I soon found that I could make a difference for at least one person at a time if I was a caregiver for people who were struggling. I could understand them, even if I did not have the same problem, I knew a lot of the frustrations and the fears that dog the people who are beat down by disease or disability. I could relate.
In the world where success is measured in money and cars and home value, I was beginning to learn real success is measured by a different rule. Real success was measured in my new lifestyle by whether I could help people understand how to cope with the issues they had in health or disabilities. In the late 80’s I was working for a well-driller in the North Central areas of New Mexico. On the job, I was exposed to powerful plastic solvent cement. I had already had several episodes with heart and blood pressure problems, but nothing compared to or prepared me for what I was about to experience.
I had been working on a community water system in a small mountain top village. Crawling back and forth in narrow and low ceiling tunnels running from access holes or manholes. I had a fan moving air through my work area, but it air locked at some point during the fateful day. I was working at a steady pace, cutting and fitting plastic water pipe and cementing it together with PVC solvent cement.At some point, I passed out, and I woke up almost seven full days later in an ICU in UNM Hospital in Albuquerque. I was there for quite some time and after extensive tests, it was decided by doctors that I had been overcome by the solvent fumes and that I was now doomed to be partially paralyzed.
Nutritionists taught me what to eat and how to use my diet to cleanse my body of toxins, and I also was sent to the Therapists to try and restore function and feeling in my hands and feet and legs and arms. To this day, my right side is weaker than my left, and when you consider that I am right handed and that was once my strong side, it can give you some idea of the way I had come down.
On one particular morning, the therapists came into the room with a sketch pad and a handful of pencils. She laid them on the table in front of me and told me to try drawing. I could restore some of my lost eye-hand coordination. I was very interested in giving it a try. I had started sketching when I was just six years old. Over the years, it had become my escape and my relaxer, my way of being able to meditate and think through issues and problems I might be dealing with. My hands and fingers were doing the sketch and my mind was processing the events and things I needed to deal with. Needless to say, first attempts are not too good when nerves are non-responsive and my hand felt like a mitten was on it preventing feeling. I was frustrated, but I kept at it. I had once turned out prize-winning artwork in school and competitions, and now it was a struggle to do anything. I also tried my hand at playing musical instruments again. Didn’t do so well there. But in the area of art, I had little breakthroughs that were huge for me. I was eventually showing in galleries and in various shows and I was even able to make some money which helped with medical bills.
It did not take long for me to see the effect art therapy had on patients. I introduced old men who had been rough and tough to a world of sketching and painting and at first they might balk at the idea, soon they were deeply involved in trying new techniques and mediums. In my own case, I realized I could track my recovery by how my artwork was progressing. And as it worked for me, I found it particularly useful for stroke and brain injury victims. I could write a long discussion about how to set up an easel and or painting area, but it is better to try it first with your patient. It is actually something you can do together if you like to do artwork yourself. Try something small and easy at first. Biting off too big a task will cause frustration and feelings of failure for either you or your patient. Many times what I considered my simpler work was the pieces that sold for the most money in shows or galleries.
My wife is wheelchair bound and disabled due to a motorcycle accident. She did not quit on life at age seventeen laying in bed with lower body paralyzed but made up her mind to do something positive with her life. She went to college and earned a degree in Education with three endorsements. She then spent the majority of her career teaching school children. One of her favorite classes to teach is art.
I watched her take a special needs group of boys who were all diagnosed with ADD or ADHD and teach them how to work in clay. Many of the boys in that group had never sat still for more than a few minutes their entire life. She had them all quiet and focused and doing a piece of sculpture for had peace among 32 boys for over three hours. The parents considered her a miracle worker.
It is not difficult to understand how it could be that those boys were so compliant. Artwork demands most of the brain function to be available. The combination of the various tasks helps the memory and cognitive and analytical and emotions to all work together to produce an image or play music or make a piece of art. It is very good therapy for people who have had a stroke. It can be frustrating, however, so it needs to be slowly introduced at a steady and slow pace at first until a balance is achieved. Sorry, I wish I had words that would describe this adequately, but at the point the artist begins to feel the artwork coming alive under the fingers, there is no need anymore to encourage the situation. At some point, it begins to draw a person in. At least that is what it does for me.
I have had several phases of fighting for life after severe bouts with strokes and heart failure, and also had to deal with more than one chemical poisoning. Artwork gave me a way to rehab my fingers and restore that eye-hand coordination that is so essential to working in wood and construction.
The eagle was drawn more than once and painted more than once. Each time I produced a new piece, I would compare the latest with the one before, to see how my hands were improving. Above was the last painting, below is the last drawing.
I tried to go out to actual locations and draw, but found our high country is seldom warm enough for my fingers to work freely. Not wanting to brave early spring days or midsummer heat, I resorted to cameras and the photos could be hung on my sketch board and used to inspire my drawing. It is not necessary to get an expensive camera or look for good shots out in the area where you live. If you or your patient is just getting started, magazine photos give great choices for inspiring drawing and painting. It is not about achieving perfection right away, but it is about achieving peace and joy and having a non-threatening way to revive nerves and muscles that would otherwise atrophy. It is one of my personal great joys in life, and I can often unwind and let off a lot of frustration, disappointment, and hurt while drawing and painting. It certainly is wonderful that my wife is as avid an artist as I am. We sometimes consider doing projects side by side. She is also a musician. So she can and does play guitar and piano and sing. That is a fun little way to de-stress as well.
I wanted to post a few more pieces here and give you an idea of how they were inspired so it might trigger your own creative juices flowing.
For those people who are in the battle for a loved one’s life, I realize that just like me, you might not have a lot of time. The beauty of artwork is that you can start a piece and just give it a stroke here and there and it will wait for you. Flexible timing is key. Some of my most intricate works are the pieces I did while sitting with my wife in a hospital room day after day. I could be doing something while the staff took care of her, which made me feel like I was doing something and also gave her reassurance that I loved her enough to sit with her and stay with her.
So here goes my gallery string,
The red fox is a pen and ink drawing, felt tip and drafting pens were used, and the model was sitting at the end of a field and posed for my camera one winter day when I was a teenager. I drew his picture more than 30 years later.
The clipper ship above was a pen and ink and took months to draw between taking care of my close friend. It took hours of painstaking detailing to render the ship. I did it because the designer of the ship was Captain Robert Waterman with John Griffith Naval architect putting the ideas down on paper to build the ship. This one, The Sea Witch set sailing records that still stand today. I was amazed that ships could be built that sailed faster than 60 miles per hour and could put more canvas in the air than what the area of a football field was in size. I did my very best to do the ship justice as it was a piece of art as well. Clipper ships were built almost as fine furniture.
The windmill is another painting that took months to finish. I was taking care of a group of men in rehab who were kicking drugs. Their issues would fill my day and left me with little free time. I learned during this time that acrylics and water colors were much easier to break out and use than oils as there was a much less demanding method with acrylics and water colors. Colored pencils and pen and ink were also very easy to use as they too did not require so much setup time.
Lefty and lightfoot of course, need no explanation as what inspired the drawing. A photo was shot for a magazine and I could not resist. New Mexico has a healthy movie industry tied to Hollywood, so I was able to make some use of photos of famous actors too. Try to guess which Carradine brother this is next!
The wolf was photographed in the Yellowstone park and the little raccoon kit was just a couple weeks old and bathing in my mother’s watering can on the family farm when I photographed him and drew his picture. Several of these drawings were produced when my mother needed a caregiver while she was dealing with a heart failure.
All of these drawings were done in small snatches of minutes taken between feeding, changing beds, cooking meals and transporting patients. Sometimes I had good drawing pads and other times I used copy paper from a machine in a hospital. They were all therapy for me and many made me some spending money used to help cover expenses.
The masked bandit below says goodbye and that’s all for now!
Just remember, this is not about being a perfect artist at the first attempt. This is about expression and unwinding and dealing with stress and having some way to feel that you are still able to do something from your heart other than changing beds and cooking and dispensing meds.
I met artist and caregiver Shentel Persons on Instagram while browsing for users that happened to also use the hashtags we #caregivers often search for. After a while of following her, I discovered not only was she an incredibly fun and positive caregiver to her main client, Merry H., but also a talented artist whose creativity influences her and her client’s day-to-day activities, which range from dancing to painting and singing. We highlighted her in our round up of our favorite caregivers on Instagram.
I had a great exchange with Shentel recently, and she was extremely enthusiastic about letting The Caregiver Space feature her as our first artist in our “Caregiving Artists” series. Without further ado, here’s a little about caregiving artist Shentel Persons from Shentel herself.
I’ve always been a lover of arts & crafts. Drawing came naturally. I drew as a child and took a few drawing courses at Portland Community College. For the most part, drawing courses involved graphite (grey) and charcoal (black). But I yearned for color! I began to add color in my assignments on my own. I began to study painting tutorials on YouTube and that’s how I learned to paint. I’ve been at it for four years now! I enjoy painting acrylic portraits using texture and glitter. Painting is my therapy.
As a caregiver, it was nothing but God’s grace that paired me with client, Merry H., who is also an artist, but hadn’t painted for years until we linked up. She calls me “Coo Coo” and tells me she loves me! Creating a way for Merry to paint again has empowered not only her but myself as well. Laughing, producing art together and bringing a smile to her face is the highlight of my day!