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The Nitty Gritty on Care Partnering

For those of us who are sometimes patients, and at other times care partners, it can be useful to have a checklist to make helping a friend or family member navigate cancer treatment, or treatment for any other medical condition.

Here’s a short list that can be used in any patient-with-a-bedside-care-partner situation. If you have any ideas for things that would be good to add, hit me up via @MightyCasey, or shout out to @Power4Patients, on Twitter.

Here we go.

  • Make sure you – the care partner – have been named in your patient buddy’s Advance Directive as the person who can speak for your friend when they can’t speak for themselves due to intubation, anesthesia, or loss of consciousness. Here’s a handy link with downloadable forms to create an Advance Directive in all 50 US states.
  • Since you’ll be speaking for your friend in situations where they can’t speak for themselves, it’s critical that you know what their wishes are in scenarios from “coming out of anesthesia” to possible life support situations. What are your friend’s wishes? These are sometimes tough conversations, since facing mortality isn’t something humans are naturally wired to do. Two tools that can help you and your friend figure out the what-ifs for their wishes are Engage With Grace and The Conversation Project. Pick one, get started.
  • Do you have access to your buddy’s patient portal? Most EHR software platforms have “share” utilities where you can share your record with a care partner. Get that organized early in the care partnering process, so you can be able to answer questions about medications and patient history when your friend can’t speak for themselves.
  • Speaking of medication lists, make one. It can be as simple as a notes file on your phone, or a printed sheet that you can refer to, and copy, for anyone who needs it. Update it as/if medications are added to your friend’s list. Make sure you have dosages and timing for all of them on that sheet or in that note file, too.
  • Is surgery involved in the treatment plan? If so, make sure you and your buddy keep a calendar of pre-op testing requirements – blood work, scans, and so forth. A shared Google calendar can be a great tool here, or you could go old-school and just use a wall calendar with large blocks to write on each day.
  • Will you need durable medical equipment (DME) during the treatment and recovery process? DME is stuff like wheelchairs, walkers, knee scooters, woundVAC systems. You can either buy or rent this gear. Pro tip: Amazon and Walmart pricing on this stuff is much less than from a traditional medical supply house.
  • On that supplies front, there might also be what are called “expendables” required: bandages, wound wraps, bandage tape, wound packing material, and so forth. Another pro tip: if you need to buy this stuff, Amazon is the medical supply house with all the best deals. What costs you $40 at the local drugstore will cost you $8-10 or less on Amazon.
  • Will home health care be part of your friend’s recovery? Working with the Nurse Care Manager at the hospital or health system where your buddy’s getting care, get a list of reputable home health agencies in your geographic area, and interview them. Asking questions about how they coordinate care across nursing, occupational therapy (OT) and physical therapy (PT) sessions. Recent personal experience here is that a home care agency that has a system in place for “who’s on next” and “when are they coming” that’s left in the patient’s home, useable by them (the patient) and the home care crew is who you want to hire.

Care partnering with someone isn’t something to be taken lightly – if a friend asks you to do it for them, it’s a mark of how much they trust you. If you’re someone facing a Big Medical Adventure, figure out who you trust enough to walk with you through that adventure, making decisions that align with your wishes when you can’t speak for yourself. It’s one of the most human acts of kindness you can perform, care partnering.

How to Be a Good Care Partner 101

How to Be a Good Care Partner 101 from Patient Empowerment Network on Vimeo.

 What is the most important aspect of being a good care partner? MPN Network Managers, Jeff and Summer give tips on best practices for being a phenomenal care partner. Jeff breaks down his strategy for managing Summer’s myelofibrosis, including modifying their schedules due to Summer’s fatigue.

Most important tip?
Jeff: “To be a good caregiver, you have to take care of yourself.”

Want to connect our MPN Network Managers, Jeff and Summer? Email them, question@powerfulpatients.org

MPN Patient and Care Partner Share the Importance of Staying Positive and Setting Goals

MPN Patient and Care Partner Share the Importance of Staying Positive and Setting Goals from Patient Empowerment Network on Vimeo.

In the midst of a crisis, it’s quite difficult to set goals. With so much changing rapidly, how can we keep focus?

PEN MPN Network Managers Jeff and Summer share tips for tapping into resilience, keeping focus and setting goals. Both share their rituals for staying focused and having fun.

Want to connect with Jeff and Summer? Email them at question@powerfulpatients.org

Care Partner’s Checklist During a Crisis


 

PEN’s Care Partner Network Manager, Sherea Cary, shares her tips for care partners during a crisis:

 

Cancer Patient and Care Partner Tips for Keeping Busy During A Pandemic

Cancer Patient and Care Partner Tips for Keeping Busy During Pandemic from Patient Empowerment Network on Vimeo.

MPN managers Summer and Jeff share tips for keeping busy during a crisis. They both share how exercise, scrapbooking, and zoom improvisational theater has kept them occupied.

Summer, who lives with myelofibrosis, shares her experience with getting her regular blood draw and some of the new procedures in place allowing her visit to be smooth.

How are you keeping busy? Let Summer and Jeff know: question@powerfulpatients.org

Cancer Caregivers Need Support, Too

This podcast was originally published on Cure Today by Kristie L. Kahl, on August 1, 2019, here.

In this week’s episode of the “CURE Talks Cancer” podcast, we spoke with a caregiver about the support needed for others taking care of a loved one with cancer: They need it, too, she says.

In a letter to her younger self – through Merck’s Your Cancer Game Plan “With Love, Me” campaign – Kristi, a caregiver to who her husband who was diagnosed with stage 3 HPV-related tonsil cancer in 2013, addressed the labels associated with a cancer diagnosis and the support she hopes others receive when caring for a loved one with the disease.

“Nothing about cancer is going to be by the book – there is no book,” she says. “You can talk to other people who have experienced similar cancers, but just as every person is unique, so is their cancer. Inconsistency is going to become the only consistency.”

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.