Posts

Managing Side Effects – Nausea and Vomiting

This video was originally published on YouTube by The American Cancer Society on July 11, 2019 here.


Perhaps the most common side effects of chemotherapy, and sometimes other treatments, are nausea and vomiting. This video provides tips for how to cope with these incredibly uncomfortable symptoms.

Learn more at: www.cancer.org/caregivers

Fear of Recurrence

This video was originally published on YouTube by The American Cancer Society on November 5, 2018 here.


Did you know that in addition to patients, caregivers may also be concerned about the cancer returning? This is called fear of recurrence. When your loved one finishes treatment and is no longer followed closely by the cancer care team on a regular basis, you may feel anxious. You’ll learn about how to manage those fears through tips on how to better cope with those feelings.

Learn more at: www.cancer.org/caregivers

Stress Management

This video was originally published on YouTube by The American Cancer Society on November 5, 2018 here.


Feeling overwhelmed and juggling multiple responsibilities on top of providing care to your loved one with cancer can lead to feelings of anxiety and depression. You might feel as if the weight of world is on your shoulders. Four tips for coping are provided to help lower your stress level and better cope when times get tough. Learn more at: www.cancer.org/caregivers

How to Care from Afar

This video was originally published on YouTube on March 7, 2019 by Family Caregiver Alliance.


One of the most difficult and time-consuming tasks many caregivers face is the coordination of care for their loved one. This is especially true for long-distance caregiving. This webinar will illustrate the challenges and suggest potential solutions for long-distance caregivers. Examples will be used from a case study of an elderly person facing decline and living 400 miles away from her primary caregiver.

The personal, financial, medical, social, and legal needs of the person being cared for, along with potential red flags, will be discussed in addition to tips for making these big decisions. The overall focus of this webinar will be about how to maintain the independence, dignity, quality of life, and happiness of the person for whom care is being provided.

Objectives:

  • Recognize changes and unmet needs of a loved one with a chronic and progressive illness
  • Identify helpful resources and technology
  • Create an action plan to ensure follow through to improve the caregiving situation

Speaker: Ladi Markham, RN, BSN, MA, CCM Ladi Markham holds degrees in nursing, gerontology, and hospitality. Ms. Markham has worked in home care for five years and long-term care communities for 10 years. She has experience in several aspects of aging and uses them to promote wellness and high standards for the quality of life for her clients and families.

Discharge Planning is a Family Affair

This video was originally published on YouTube on March 7, 2019 by Family Caregiver Alliance.


Webinar slides may be downloaded here.

What You Should Know About Caregiver Burnout and How to Avoid it

Taking care of a loved one can be one of the most rewarding experiences, especially if you have had a great relationship with that loved one. While the overall involvement in a senior loved one’s life as a caregiver might be satisfying and make you feel happy or proud of working together, there are times when it can lead to mental and emotional burnout. After all, you are constantly required to nurture and care for another human being which could cause you to forget to care for yourself, leading to “caregiver fatigue” or also known by the popular phrase, “caregiver burnout.”

According to the National Alliance for Caregivers, on average, family caregivers spend around 24 hours a week providing care for their loved ones. I personally was spending anywhere from 20-30 hours weekly while taking care of my grandmother. It really depended on the week and the needs that came up. But sometimes, it felt like much more time was being spent taking care of my grandmother rather than myself.

What I learned during the process was that the best way to avoid caregiver burnout was to identify when I felt I was going through it. Then, to prevent it. Which led me to highlight some signs linked to caregiver burnout.

Signs leading to caregiver burnout

The following signs point to caregiver burnout:

  • Tiredness and a lack of energy for activities that you could, previously, easily perform.
  • Having trouble sleeping.
  • You no longer enjoy activities, specifically hobbies, that you loved.
  • Relationships with loved ones start to become strained.
  • Frequent headaches and/or body pain.
  • You are easily irritable.

The above list of signs isn’t exhaustive but contains the most common signs that caregivers start to experience prior to or during burnout. While the above list is specific for emotional burnout, physical burnout is also important to avoid. Most caregivers face it from having to carry their senior loved ones from room to room or up the stairs or not getting proper sleep.

It is vital that our loved ones utilize technology that is available to them such as wheelchairs, canes, and even stairlifts for elderly persons to take that burden off of yourself. You can help with this by making a list of mobility or technology devices that can benefit both of your lives and take the stress off of your body. While your senior loved one may not be very keen on the idea of using mobility devices (not all are), you’ll need to reason with them why the device is a necessity for them and yourself. Hopefully, they’ll end up understanding the needs of both of you.

In any case of burnout, as soon as you start to experience the signs, it is important you take a step back and analyze why you may be burning yourself out. You need to ask yourself the following:

  1. Is being a caregiver for a loved one too much for me to handle while keeping my job and other responsibilities?
  2. Am I overly consumed with looking after a loved one that I no longer take time during the week for myself?
  3. Am I not eating well or finding time to exercise? This can take a toll on you both mentally and physically.
  4. Do I still have a healthy relationship with my loved one? If you feel like you don’t, for whatever reason, then this could be causing you extra stress. Not to mention, your loved one might be feeling the stress as well.

These questions will help narrow your problem leading to burnout so you can avoid and rectify it. Most caregivers do the following to avoid or combat burnout:

Take breaks

You alone may not be able to provide full-time support for a loved one. At times many caregivers are juggling family and a job along with providing care. This, of course, is a lot to juggle and usually leads to stress and mental/physical breakdowns especially when taking care of a loved one going through a long-term recovery. Which is why you need to take breaks and at times, seek the help of professional caregivers or other family members to assist you. It doesn’t have to be every day but taking a break two to three times a week can make a huge difference and help prevent burnout.

By taking time out for yourself, you can also improve your relationship with your loved one. Personally, a break allowed me to focus on myself, which made me less absorbed on just my grandmother. I usually exercised or spent time with friends which kept me grounded.

Before I started to take breaks, I felt I was more irritated and disgruntled from time to time with my grandmother, mostly because I felt I was not getting time to do anything but take care of her. But by taking some time off from my caregiving responsibilities, I no longer felt this way which definitely made our relationship better. Even she started noticing that I was acting happier and my overall outlook about the situation was then positive.

Talk to family members or other caregivers

Humans find comfort in discussing their problems. Just the process of venting helps us get a lot off our chest. Which is why caregivers should look towards family members and other caregivers to talk to about any problems or additional stress they may be taking on. It doesn’t necessarily have to be to seek a solution but just to vent their feelings out so you stay refreshed and grounded.

I sought refuge in a friend who was also taking care of a loved one who recently went through a stroke. We would talk 2-3 times a week to listen and comfort one another. By sharing my thoughts with others, I let go of a lot of steam that I would normally store.

Most of it was just things I had to let go of, but of course, keeping it in did hurt the relationship I had with my grandmother. The more I got off my chest while talking to family and other caregivers, the more comfortable I was. Especially while talking to other caregivers because it made me realize that others also shared similar feelings and I wasn’t alone. This helped me to refocus my mindset with a positive outlook and created a stronger, deeper connection with my grandmother.

If you find yourself experiencing the signs listed above or you already believe that you have caregiver burnout, know that you aren’t alone. The best thing you can do is try to find what works for you to better your mindset. Maybe you don’t feel like you’re the issue and that your loved one is causing the exhaustion. Whatever the case, take a step back, analyze the situation, and find a route to channel your emotions. Don’t assume this is an overnight thing, consistency is key to constructing a relationship and removing negative energy.

Changing the Caregivers’ Refrain

I’ve spent the past two years since my Mom’s death wondering if I could have — no, I’ll be totally honest with you — wondering if I should have done more. If only I had looked into clinical trials while she still met the inclusion criteria. If only I had sought out and demanded that she see an expert sooner. If only I had been more patient, more present, more supportive. All of this because no matter how much you give of yourself as a caregiver, you’re always left feeling like you could, no, should have done more. Guilt, fear, exhaustion and stress are the refrain we caregivers hear, on continuous repeat, in our heads.

But what if we could change this? What if we, collectively as a community, could provide the support and encouragement that caregivers need? What if we worked together to change the refrain they (we) hear to something more positive?

My Mom, Shirley, was diagnosed with Inclusion Body Myositis (IBM) in 2008.  IBM is a relatively rare inflammatory muscle disease characterized by progressive muscle weakness and wasting. Her diagnosis came after years of our family telling her that the weakness she felt and her frequent falls could easily be solved if she just exercised more often.

Towards the end of her life she was unable to leave the house or even get out of bed. Her muscles had wasted to a point that she couldn’t move her arms or legs. She couldn’t even swallow. My Dad and I took care of her at home until she was admitted to hospice and died shortly thereafter.

The Family Caregiver Alliance reports that 34.2 million Americans have or are providing (unpaid/family) care to an adult aged 50 years or older[1].  48 percent of caregivers are between the ages of 18-49. This means that most caregivers are starting or already have families of their own to care for, careers to build and tend to, and other commitments beyond their role of caregiver.

Being a caregiver was hard. Literally, the hardest thing I’ve ever done. But looking back on it, I realize just how lucky I was. I had a committed co-caregiver in my Dad. I have an incredibly supportive husband who, without hesitation, agreed to move closer to my parents.  I also have a great support system of friends and colleagues. Not all caregivers are as lucky. Caregivers report feelings of isolation, chronic stress, depression and symptoms of declining health. Many caregivers have no one to turn to for support and encouragement. They have no one to “cover” for them when they need a break.  No one to talk to when they feel that they just can’t continue on another day.

This is why my organization, Patient Empowerment Network, is trying to grow the Empowered Patient Facebook Group. We want it to be a safe, supportive place where patients and caregivers can find the help they need, even if it’s just to swap stories or learn a new “caregiver hack” to make life a little easier. We want to work with you and for you to build a community of empowered patients and caregivers.

A dear friend once told me that we do the best we can in the moment we’re in. Maybe that’s a cop out but, having been a caregiver, I believe it’s true. The trick is reminding ourselves and each other that it’s true. I encourage you to use this community to help share that reminder and, hopefully, change the caregivers’ refrain.


[1] [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]

Patient Advocate: Paul Ennis

Paul Ennis

Patient Advocate

In January 2012, Paul Ennis and his wife became caregivers to Paul’s parents, Mary and Thomas. Mary, who had severe osteoporosis, was showing increasing signs of Alzheimer’s disease. Caring for her was becoming too much for Thomas who had his own health problems, including rheumatoid arthritis and prostate cancer. Eventually, it became necessary for Mary to receive around-the-clock care. With his own health declining, Thomas made the difficult decision to move Mary into a care facility. Then, he made another decision that led to what Paul describes as a series of very impactful events.

Thomas, who was 91, decided it was time to die. He was in pain, he was suffering, his body was failing, and his doctors could do no more for him. He told Paul he was ready to go. So Paul, someone who is inclined to gather information, set out to see what options were available for his dad. “He had the right to say he’s done,” says Paul who learned that his dad could legally make a choice to stop eating and drinking and that there was a protocol in place for the family to follow. With the doctor informed and at-home hospice care in place, Thomas made his decision. He stopped eating on a Thursday in January 2015 and four days later he died peacefully in his home of more than 40 years. Eleven months to the day later, Mary also died at home, and Paul is still moved as he describes his mother in her final rest, in the glowing light of the living room of the home she loved.

But, Paul’s caregiving didn’t end when his parents died. Paul saw to all the details of their death care and burials, including building their caskets and taking them in the back of his pick-up truck to their cemetery plots.“It was a real old school way of doing things,” says Paul who learned about the option of home death care when shopping for caskets with his dad in 2014. “What I discovered about home death care was remarkable.” The experience, he says, was an intimate and healing way to honor his parents and to receive a form of closure.

Paul documented his story when an online global think tank asked for stories regarding how people could rethink end-of-life experiences for loved ones. Paul’s was one of ten stories selected out of 400 entries. He was inspired to create a business model for a non-profit organization to aid with death and dying, but rather than focus on a singular aspect of patient care, Paul wanted to help patients in as many ways as possible.

He remembered a conversation with one of his dad’s doctors. The doctor told him that he should consider patient advocacy as a career. As a former business consultant with a background in communications and marketing, it felt natural for Paul to become a patient advocate consultant. He is now spending time building his new consulting business. “Mine is a communications-based practice,” says Paul, who approaches each client by asking them what they want. “I don’t come in telling them what I want to do; I come in asking what they want,” he says. While caring for his parents, he learned the value of having a patient advocate and recognizes how difficult it can be for some patients to self-advocate.“Navigating healthcare is pretty complicated,” says Paul whose natural compassion makes him well-suited for the work. Paul emphasizes the importance of patient health, safety and dignity and says the most important thing to him is that people are able to make choices, explore their options, get educated, and stay empowered. He also continues to share his story and information regarding the Voluntary Stoppage of Eating and Drinking (VSED) and at-home death care in hope that someone may get comfort from his experience. “That’s why I told the story,” he says.

You can read Paul’s story here and visit his website at http://www.pwepan.com.

 

Caregiver Health #CareforaCarer

Often, in my observations as a registered nurse, I have seen how resilient people can be. Through the most challenging health circumstances, patients of all ages can rally and respond to support and care. But when I refer to resilience and strength, I’m applying it to the silent army known as caregivers.

In homes, in chemo suites, hospice care, and everywhere else, on a daily basis, you can find caregivers who step up in the moments when it is needed most. These carers (used interchangeably with caregivers) provide unpaid assistance to someone in need. Often family and friends, caregiving can be one of the most rewarding experiences, but also one of the most difficult. I can say that with absolute certainty, not just as a nurse, but as a caregiver for my family.

I cared for my father through his cancer battle, his stem-cell transplant, and ultimately through hospice until his passing. It was a privilege to care for him, and I would do it all over again, but I don’t say that lightly. Caregiving can involve the hardest days and can take emotional, physical, and financial tolls with no outlet to share those feelings. This is why we need to spotlight and discuss the need to #CareforaCarer.

Here are some facts.

More than half (54%) of unpaid carers don’t have time to book or attend their own medical appointments.

42 % of unpaid carers put health of the person they are caring for above their own health.

Almost 3 in 10 unpaid carers feel their role as a carer is not recognized by the healthcare system.

While many understand that carers play a crucial role in lives of patients, what’s less understood is the need for resources and support. A carer’s own health often suffers as a result of the stress and demands of caring for someone else.

There is help.

Through working with carer organizations, and the multi-year Embracing Carers initiative, Merck KGaA Darmstadt, Germany operating as EMD Serono in the US and Canada hopes to improve lives for carers and patients.

The Embracing Carers initiative plays a key role in raising awareness of caregiving as a global public health priority as it should be. Healthier carers lead to happier, more productive workers and better carers of patients.Here’s some more information.

Embracing Carers is supported by leading international carer organizations including: the Caregiver Action Network, Carers Australia, Carers UK, Carers Worldwide, Eurocarers, the National Alliance for Caregiving, International Alliance of Carer Organizations and Shanghai Roots & Shoots, China. It has support of many patient and physician groups around the world.

Embracing Carers Initiative addresses caregiver stresses by highlighting the unmet needs of caregivers on a global and local level, empowering caregivers to advocate for their own health and well being.

As a nurse, I often preach to colleagues that you can’t take proper care of patients if you’re not taking care of yourself, and the same goes for caregivers. It’s easier said than done, but through action and discussion, we can help support each other.

What can you do to help?

  • Share this blog post.
  • Post messages of Hope intended for caregivers globally with #CareforaCarer.
  • And if you see #CareforaCarer on Twitter take a moment to hit Retweet.
  • If you belong to an organization or a business that supports carers or caregivers please share your positive programs or examples as well.

 


This blog was written by Linda Scruggs and originally published on Unboxed Mom here.

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