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Caregiver Profile: Heather Cimino

In recognition of National Family Caregivers Month, we are using this month’s Patient Profile to profile a caregiver. You can learn more information about National Family Caregivers Month here.

Heather Cimino’s father died in 2008. He had mesothelioma and lived only six weeks after his diagnosis. So, when Heather’s mom was diagnosed with colorectal cancer in April 2015, Heather became her caregiver. Fortunately, her mom lives just down the street so Heather can check on her regularly. “I sit with her on chemo days, visit with her, and make sure she has food,” she says. “I’m pretty experienced in this now.”

You see, this isn’t Heather’s first go around as a caregiver. Her first began in January 2012 while she was in the operating room undergoing a Caesarean section. She and her husband Nick were anticipating the arrival of their third son. Except, Heather says Nick wasn’t there. He was in the ER with a possible blood clot in his leg. Nick had been complaining of leg pain during her pregnancy, but Nick and Heather, who had been married seven years, were busy people. They had two sons under the age of five, another on the way, and both worked and attended school full time. He’d been told by doctors that the pain was probably just residual from a long-ago injury so Nick ignored it until that day when he couldn’t ignore it anymore.

The pain wasn’t from a clot. It was a tumor and, within a week, Nick was diagnosed with High Grade Spindle Cell Sarcoma. Treatment began immediately and, for awhile, things were okay. Heather managed to care for her three sons and Nick, who was confined to the first floor of their home: the tumor in his leg broke the bone so he required a walker to get around. Heather was even able to return to work some of the time so that they could keep their insurance. Despite the surgeries and blood transfusions and hospital stays and travel to different treatment facilities, Heather and Nick wanted to provide a sense of order for their boys. “We tried to make life as normal as possible,” says Heather who organized Nick’s pill schedule around her breastfeeding schedule. After eight rounds of chemotherapy and then radiation five days a week for seven weeks, Nick’s scans were good. “But then,” says Heather, “the tumors sprouted up and ten months in, he was terminal.”

Nick and Heather, who both had medical backgrounds, looked for any possible hope. “We would sit up all night researching,” she says, “but there was no good outcome.” They went to New York and tried a different chemo treatment, they reached out to facilities all over from Texas to Europe but nothing worked. So, they scheduled family pictures and made sure to get lots of photos of Nick with his sons.

Nick died in May 2013. He was 31 years old. Their boys were 1, 3 and 6 years old and Heather, who had not slept for more than two hours at a time since that day in January 2012, had no time to grieve. “It’s all a blur,” she says looking back. “I was so worried about the kids.” She put the two older boys in an art therapy class and found a church that embraced her family and offered her support. “It was like we started a whole new life,” she says.

Like many caregivers, Heather didn’t have time to think about her role as caregiver, she simply took it on and did what had to be done and it wasn’t always easy. “When Nick was sick he yelled at me a lot,” she says. At first, she was surprised by the behavior from her mild-mannered, soft-spoken husband, but one of his doctors told her not to take it personally. Sometimes the medication can cause the behavior, but so can the emotion. Heather equates it to a child who has to hold in his fears and angers all day in front of others and then lashes out when he feels safe.

While Heather would like to advise other caregivers to take care of themselves, she says it’s just not likely to happen. There’s no time and even when people offered to help, she never wanted to leave Nick’s side. But, she did take some advice from another caregiver. “She told me, ‘Smell your person, touch them, look at them, pick something to focus on so you will remember it’,” says Heather. “It will go so fast, so take the moment.” Heather says she is grateful for that advice. “Even now I can close my eyes and I can see the freckle he had between his brow.”

Remembering the moments keeps Nick’s memory alive.“He’s always there,” she says. “It doesn’t seem like it’s been that long, but it has.” The boys are 11, 8 and 5 now and all in school. Though, she is moving forward carefully so as not to overwhelm her sons, Heather has begun a relationship with a man she describes as very patient. And, of course, she’s caring for her mom. “We just keep trucking through,” she says.

National Family Caregivers Month 2017

National Family Caregivers Month began in 1994 as a week-long event inaugurated by the Caregiver Action Network (National Family Caregiver Association). Now it is a month-long event – celebrated each November – as a time to recognize and honor family caregivers across the country. The theme for this year’s National Family Caregivers Month is “Caregiving Around the Clock”. Celebrating Family Caregivers during NFC month enables all of us to:

  • Raise awareness of family caregiver issues
  • Celebrate the efforts of family caregivers
  • Educate family caregivers about self-identification
  • Increase support for family caregivers

In this country alone, 43.5 million people have provided unpaid care to an adult or a child in the last 12 months. The majority of caregivers (82%) care for one other adult, while 15% care for 2 adults, and 3% for 3 or more adults. The value of services provided by informal caregivers has steadily increased over the last decade, with an estimated economic value of $470 billion in 2013, up from $450 billion in 2009 and $375 billion in 2007. So, what can we do to support caregivers manage the emotional and physical demands of caregiving? Here are 10 top tips for family caregivers from The Caregiver Action Network:

  1. Seek support from other caregivers. You are not alone!
  2. Take care of your own health so that you can be strong enough to take care of your loved one.
  3. Accept offers of help and suggest specific things people can do to help you.
  4. Learn how to communicate effectively with doctors.
  5. Caregiving is hard work so take respite breaks often.
  6. Watch out for signs of depression and don’t delay getting professional help when you need it.
  7. Be open to new technologies that can help you care for your loved one.
  8. Organize medical information so it’s up to date and easy to find.
  9. Make sure legal documents are in order.
  10. Give yourself credit for doing the best you can in one of the toughest jobs there is!

Below are some of our most popular caregiver information and resources.

Importance of Caregivers 

Caregiving Tips

Caregiver Awareness at the Patient Café®

Treatment Diaries – anonymous diary entries from caregivers


http://caregiveraction.org/resources/10-tips-family-caregivers

Finding Meaning After the Caring Is Over.…

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a diagnosis is important. Connecting you to those who can relate and provide support is what we do.

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It’s almost six months since mom died. I still am in a vulnerable place. Still trying to work, but not seeking it aggressively. Still trying to find my path forward. I had a bad fall about a month ago, and I’m still recovering. My knees, legs and feet are not right. Through no fault of my own, I lost my health insurance. As of today, I get to choose my plan on the exchange, and hope to get back what I lost, keep my doctor, and get back on track.
treatmentdiaries-dec
In this weird time, I have learned something about myself. Through caregiving, I learned to be still. During the worst times before mom came to live
with us, I had to literally sit still in her apartment, and just be there when she was full of fear, hallucinating, paranoid. During the worst times of her dementia, when I was searching for information, help, connection, I found power in stillness. Overpowering my own fear. Being strong for her. It took years, moving her here with my husband and myself, fighting for everything she needed. She gained so much here. The return of her sweetness and fine sense of humor, the conquering of her fears, the benefit of community.

Fast forward to the last days of caregiving. More than six years later, mom had become so frail. At the end we brought in a hospital bed, supposedly to keep her safely in bed. What the universe didn’t know was that this tiny woman had the power to launch herself over the bars, or through the openings between the rail and the foot of the bed, and end up in her old bed, sitting in her wheelchair, or even curled up on the floor. I never had sleep. I never knew what or where she’d be when I went into her room. I needed to be on guard to hear her soft raspy voice call me at any moment.

But the thing that frightened me most and what I HAD to face and get over, was the fear of infantizing my mom, by changing her depends in the hospital bed. This fear was causing us to get up at any hour, and take her into the bathroom, where I had to hold her up with one arm and tend to her with the other. It was hard on her, she was too weak to support herself. It was hard on me, my shoulder was already compromised from the years of supporting her or steering her walker, among so many other things.

This fear grew out of caring for my dad years before, who had Parkinson’s, and was so angry at his loss of dignity. My brother and I have terrible memories of tending to him, and falling over with laughter when things went wrong. My dad was so angry. I loved my dad more than anything, and incurring his anger left me scarred.

So when faced with having to change my mom in her hospital bed, I avoided it as long as I possibly could. But finally, I asked the visiting hospice nurse (more about this later) to show me how. I learned a few tricks from her. But I still had to get over my fear of insulting her dignity. Mom was not like this. She didn’t seem to be angry that her daughter was changing her, holding her up. She was fighting her own weakness. She might not have known who I was at these moments. And mom had her sense of humor intact. Till the very end. This was her gift.

The night I finally changed her in the bed, I decided to reward us both at every turn with cheering! Praising her to the skies when she could turn over on her side, praising myself with my ability to do every task! Praising us both with loud cheering! Good for you! Good for me! Hooray for us! Hooray!

Now you may think this is a little nuts. And maybe it is. But by gaining courage through humor, I think I have found meaning and conquered my greatest enduring fear.

Caregiving Tips

Editor’s note: Stella is the care partner of Len, a CLL patient. They both participated in the September session of the Patient Café™ that talked about clinical trials. I had asked Stella for some caregiver tips to share, and she proposed the list below.

Stella’s List

Being the caregiver of a CLL patient on “watch and wait” is not easy. It requires remaining constantly vigilant to the patient’s physical and emotional health. Below are some coping tips that I learned during my experience as Len’s caregiver:

  • Reduce stress by learning as much as you can about your partner’s condition. There are numerous online resources in the way of written materials and videos. Watch and read and learn. You don’t have to try to learn as much as a doctor by any means. There are plenty of sites that focus on patient education that will give you a good idea of the biology of the illness and the treatment options.
  • Know yourself and set boundaries for what you can and can’t do. Take care of yourself, live and eat healthy, get plenty of exercise and be sure that you are living your life also. Get a hobby that you enjoy and get plenty of rest.
  • You are not alone and do not try to do it all by yourself. Talk to friends and family. Join a support group for caregivers. Get professional help if you feel you need it. Caregiving is a demanding job. Be sure and ask for help.

Caregiver_Awareness_Month

  • Make sure you get your patient to see a specialist. Often the patient feels indebted to the doctor who diagnosed the disease. That doctor may or not be a CLL specialist. Get a second opinion. We have talked to care givers that do not want to upset the diagnosing doctor. Too bad about the doctors feelings this is the life of your loved one. If a doctor is unwilling to work in tandem with a specialist get a new doctor,
  • Prepare for doctor appointments. Several days before doctor visits, sit with the patient and talk about the upcoming visit. Discuss what questions to ask of the doctor and of the nurse. Write all questions down in order of importance to the patient and caregiver.
  • In discussing which questions to ask, make sure that you ask the patient if it is OK to discuss questions that you think may embarrass the patient. Make sure that you consider the patient’s feelings and offer to discuss how to broach any embarrassing topics. The patient is the keeper of their own health.
  • Attend all doctor visits with the patient, take notes and be the patient’s advocate. Ask questions and prompt the patient to ask questions also. Share in the decision-making and make sure the patient’s voice is heard.

Being a caregiver is demanding, but rewarding. It is about sharing feelings and support and helping a loved one to live well with their illness. Your aptitude has a major impact. Stay hopeful: new research is making strides every day.