Arranging Comprehensive End-of-Life Care for Elders with Cancer

/in , /by

Cancer is a disease no one wants to face. But whether you are the one with cancer or caring for a loved one, contending with a cancer diagnosis inevitably takes a toll. Sometimes, the outcome does not come in the form of remission. Sometimes, it is greeting the new day or taking the next breath.

For some, the outcome is making one’s final days comfortable, meaningful, and peaceful. The reality is that all of us will someday transition out of this life and, for some, cancer will be the reason.

If you or someone you love is facing a terminal cancer diagnosis, planning for end-of-life care makes it possible to meet this last stage of the disease with the dignity, comfort, and peace of mind you and your loved ones deserve.

The Benefits of Remaining at Home

Many people faced with a terminal diagnosis find security and comfort in the ability to remain in their own homes. However, there are some steps that should be taken to ensure that the home is safe and comfortable for someone with an advanced stage of cancer.

Many of the same steps that can be taken to prepare a home for a senior can be used to ensure accessibility for those with cancer. This would include, for example, securing down rugs, removing other obstacles that may pose a fall risk, installing grab bars in bathrooms, and retrofitting doorways and shower stalls for wheelchair access.

In addition to ensuring that the home is safe, secure, and comfortable, it’s also helpful to recruit in-home caregivers to address patients’ evolving needs. For example, home-based caregivers can run errands, help patients with household chores and personal care, including bathing and dressing, and provide much-needed companionship and support.

In-home caregivers can also greatly amplify the benefits of enabling patients to remain at home when nearing the end of life by making it possible for them to remain with friends, family, and their beloved companion animals.

There are few things more comforting than the love of a family pet, and for those facing aggressive cancer, the benefits of simply stroking a purring feline or cuddling with a fluffy puppy cannot be overstated. Companion animals have been shown to reduce blood pressure and heart rate, alleviate depression and anxiety, and promote an overall sense of happiness and well-being. And there is perhaps nothing more precious or more important when you are facing the end of your life than that.

Enlisting Hospice and Palliative Care

For a patient confronting terminal cancer, the love and care of family and friends can be an incomparable source of support, comfort, and companionship. Nevertheless, there are times when a patient’s needs surpass the capabilities of non-professional caregivers.

In times like this, enlisting the services of skilled care providers can mean all the difference to a patient’s comfort and overall quality of life. Hospice care services, for example, are by no means limited to the final stages of a patient’s life.

Hospice care can be enlisted relatively early on following a terminal diagnosis. Similar to palliative care, these skilled nurses and clinicians can offer in-home services to help with disease management and pain control; supporting patients’ physical, mental, and emotional well-being to the greatest extent possible and for as long as possible.

Financial Planning

Anyone who has faced a cancer diagnosis knows that, even with the best medical insurance, cancer can be an obscenely expensive disease. Financial stress relating to cancer treatments can be devastating. Patients who are nearing the end of their lives may experience extreme distress over the perceived financial burden they are leaving their loved one.

This is why effective financial planning is an essential aspect of comprehensive end-of-life care. As profound as the financial weight of cancer care may be for families, there is a range of resources available to help fund treatment and travel, including grants and stipends made available through the American Cancer Society and related organizations. In addition, medical debt forgiveness and low or no-interest repayment plans are available through many health systems.

Proactively pursuing a strong financial plan when you or someone you love is facing the end stages of a terminal diagnosis can provide immense peace of mind, allowing you and your loved ones to focus on what matters most: building memories and cherishing your time together.

The Takeaway

Cancer is cruel and sometimes the best outcome is not allowing it to rob you or your loved one of peace and joy in the final stages of life. Creating a comprehensive end-of-life plan for yourself or someone you love is a difficult, highly emotional journey. Nevertheless, being proactive regarding end-of-life care is an important and empowering act — one that ensures that you and your loved ones find peace, comfort, and security in this final stage of life.

Roles Reversed: Taking Care of Your Care Partner

/in , , , , , /by

Roles Reversed: Taking Care of Your Care Partner from Patient Empowerment Network on Vimeo.

MPN Empowerment Leads Summer and Jeff are experiencing a bit of a change. Jeff is Summer’s care partner, however the roles have been reversed. Jeff recently had a knee replacement and is unable to do many tasks he was before. Summer has jumped in taking care of Jeff, but admits it’s harder than it looks. Watch and hear Summer’s comedic take on switching roles and stepping into the care partner role.  

Want to connect with Jeff and Summer? Email them at question@powerfulpatients.org or text EMPOWER to (833) 213-6657. 

Transcript:

Jeff:

Summer! Bring me a snack.

Summer:

Yes, I’m bringing you a chocolate bonbon.

Jeff:

I don’t want a Ghirardelli, I want a Walker’s shortbread.

Summer:

Ugh, yes sir.

Being a caregiver is not a day in the park.

Jeff:

Hi, I’m Jeff.

Summer:

I’m Summer, hi.

Jeff:

We’re your MPN Network Managers for the Patient Empowerment Network. We’re here today to continue talking about caregiving. In the last video, we talked about me being Summer’s caregiver and or different roles and what I bring to that and so on. We had a chance in the last month to actually turn the tables.

In mid-December I had a knee replacement and since then, Summer has been acting as my caregiver. Tell us how it’s been, Summer.

Summer:

Ugh, it’s been exhausting. I’m driving, I’m doing dishes, I’m emptying the garbage, I’m cooking all the meals, I’m getting everything exactly the way you want. You’re lot more of a perfectionist than I am…

Jeff:

Yup, I should be able to drive in another week or so and Summer hates driving, so I really appreciated that. And pretty soon I’ll get back to my role of doing the driving anyway. She’s done a wonderful job, really been very helpful and I’ve been extremely appreciative of it. What’s been the hardest thing for you, Summer?

Summer:

Thinking about all the little things you take for granted that you couldn’t do, like mailing your letters and emptying your garbage. That’s everything, you really have to be on the ball and think of what the needs of the other person really are.

Jeff:

Very true. We stressed that in the last video. Needs of the patient. We have a real supportive relationship in our normal marriage in general, so for us it’s not difficult, but some people may have a difficult time adjusting to being a caregiver or even being a patient.

Summer:

Right.

Jeff:

One thing you have to remember, give the caregiver time for themselves. I think I did a pretty good job trying to give you time for yourself.

Summer:

Yeah, I did my aerobics, I visited friends, I rehearsed for the play, I did my stand-up comedy, yeah, I did.

Jeff:

So, it’s worked well for us. So, as you enter into this relationship of patient and caregiver, be aware of each person’s needs. And, you should have a good experience with it.

Summer:

Darling, I have an urge for a chocolate cookie. Could you bring me one? I gotta take a nap.

Jeff:

Certainly. I’ll get it after we say goodbye to the people. Goodbye, ’til next time.

Summer:

Bye, ’til next time.

Patient and Care Partner Address the Mental Aspects of an MPN

/in , , , , , /by

Patient and Care Partner Address the Mental Aspects of an MPN from Patient Empowerment Network on Vimeo.

MPN patient Summer emphasizes how important it is to have goals. One of her personal goals is to walk 10,000 steps each day! As a care partner, Jeff shares his main goal is to do whatever he can to help Summer achieve her goals. Some of their shared goals are to live life to the fullest, always live in the moment and don’t let the disease you have control your life.  

Want to connect with Jeff and Summer? Email them at question@powerfulpatients.org or text EMPOWER to (833)213-6657. 

Transcript:

Jeff:

Hi, I’m Jeff.

Summer:

Hi, I’m Summer. And hi, I’m Zelda.

Jeff:

And we’re your MPN Network Managers for the Patient Empowerment Network. Here to talk to you today about emotional and metal aspects of dealing with a severe or very serious disease. Summer has some real strong thoughts about that, so I’m going to let her tell you about it.

Summer:

Well, I think it’s really important to always have goals. And one of my first goals, this is my Apple Watch right here to keep track of my steps so I can get 10,000 steps a day. That’s really important. Of course, I’m still teaching my classes. That’s very inspiring. We’re putting on a show pretty soon. And my goal right now too is I’m getting ready for my next comedy show. I’m going to talk about the cloud and about those little people that are in the traffic signs that tell you when to stop or go. And of course I’ve got Zelda and I don’t know what her goal is, just to be a good dog. So, that’s what my goals are. To stay positive.

Jeff:

And Summer has those goals, but one serious and important thing that we decided when she got this disease was we were going to live every life, every moment of our lives to the fullest, in the moment. And that took some adjusting because I’m a real planner. We pay attention to enjoying everything that we do, each day that we do it. And, we decided early on not to change our lifestyle, not to let the disease control us, and just to keep going. And, that alone plus Summer’s fantastic exercise regimen has really done a lot to keep her in good shape and to keep her strong.

As a caregiver, my goals are do whatever I can to help her achieve her goals. So, it’s really important to live life in the moment and keep a positive attitude. Don’t let the disease control you. That’s our advice.

‘Til next time, I’m Jeff.

Summer:

I’m Summer and I’m Zelda.

Breaching Cultural Barriers in Cancer Caregiving

/in , /by

Humanity is diverse with no two persons being alike. We all face our own struggles, we all have our own ways of handling the hardships life throws at us. While we all may face similar obstacles, that doesn’t mean that each encounter is the same. Cancer comes in many forms with many faces and each person’s experience with it is incredibly unique.

Because the struggle with cancer is as diverse as the people who handle it, it’s imperative that healthcare providers and caregivers alike strive to understand the values and perspectives that shape the cancer patient’s approach to treatment. Among the most important aspects of this is in learning to breach the cultural barriers involved in cancer caregiving.

The Significance of Transcultural Nursing

Culture plays a powerful role in nearly every aspect of human life. It shapes what we do and it informs how we see others, how we see ourselves, and how we see our world. Culture also plays a pivotal role in defining how we understand and respond to illness.

For this reason, the effort to understand a patient’s culture is essential in providing high-quality care. This is where transcultural nursing comes in, particularly when it comes to caring for marginalized and traditionally underrepresented patient populations, such as low-income patients who live in remote areas.

At the heart of transcultural nursing is the effort to understand how a patient’s culture has influenced their health practices. Transcultural nurses leverage this understanding to devise personalized treatment plans that not only serve the patient’s health needs, but that also respect and align with their personal values and beliefs.

Such efforts are especially critical in cancer care, when recommended courses of treatment may sometimes clash with the patient’s wishes. All too often, indeed, healthcare providers may unwittingly dismiss, disparage, or disrespect a patient’s worldview and in the process undermine their right to bodily autonomy simply because the patient’s perspective does not line up with the practitioner’s view of “the science.”

A transcultural approach to patient care, though, can go far in making the exam room a “judgment-free” zone. If we want patients to be truly empowered, if we want them to enjoy and to exercise the self-determination that is their right, then they must first understand that clinicians will respect their beliefs without judgment, even if they do not share them.

Cultivating a “judgment-free” environment in the healthcare system is often the first, most difficult, and most important step in the process of shared decision-making, a process in which the patient’s self-defined goals, needs, and values carry as much, if not more, weight than the clinical data.

End of Life Care

Though hundreds of thousands of people around the world are winning their fight against cancer every day, the reality remains that, for some, victory over cancer will not mean survival. It will, rather, be defined not only by how the patient chooses to fight but also by how they choose to withdraw from it.

And this, too, is a decision that is often deeply imbricated in the patient’s cultural perspectives on illness, death, and dying.

If the patient is a person of faith, for instance, then they may be unwilling to undergo invasive surgeries or grueling treatments to prolong their lives. Healthcare providers and caregivers must endeavor to understand patients’ views of their own mortality and how these shape the patient’s choices regarding treatment.

Considering the Caregiver

As important as it is for care providers to understand the patient’s culture, it is equally important for caregivers to carefully reflect on their own values, perspectives, and beliefs, as these can and do strongly influence patient care practices, even at the subconscious level.

For instance, cultural values regarding quality-of-life issues may compel healthcare teams and informal caregivers alike to unconsciously scale back in their efforts with those patients whom they believe are enduring a “life not worth living.” These cultural perspectives also often obfuscate the fact that quality of life assessments are highly subjective and that these may easily conflict with the patient’s and family’s perspectives on what makes life worth living.

In the case of cancer care, for instance, patients and families may be willing to pursue a litany of experimental treatments, treatments that may seem both outrageous and futile to healthcare providers, who may feel that the patient has long since exceeded the subjective threshold for the “intolerable” quality of life.

In such cases, a caregiver who does not understand the personal and cultural factors informing quality of life perspectives is unlikely to be able to build the kind of trusting, respectful, and supportive relationships that patients need from their healthcare team.

The Takeaway

In many ways, culture defines who we are, what we do, and what we believe. It also strongly shapes our views about and responses to potentially life-threatening illnesses, such as cancer. For that reason, it is incumbent on caregivers to break through the cultural barriers separating them from their patients. Only then will patients enjoy the respectful, empathetic care they deserve.

How Can Care Partners Combat Burnout?

/in , , , , /by

How Can Care Partners Combat Burnout? from Patient Empowerment Network on Vimeo.

Care partners Diahanna, Sherea, and Patricia discuss how they have learned to overcome burnout. Often times when caring for a loved one, we don’t even realize the burnout until after the fact. As care partners, you have to know when to step away and take time for yourself, so you can effectively care for and support your loved one. 

Transcript

Diahanna:

Hello, we’re going to talk about care partner burnout. So the question I would like to pose is, how would you describe caregiver burnout? And how do you feel it coming on? And how can you counteract it? And Patricia or Sherea, either one of you can answer those questions, it would be great to hear from you.

Patricia:

Let me just start with, I have been a caregiver. Although I am right now experiencing multiple myeloma, my father had multiple myeloma and passed in 1990 and I was his caregiver. At that time, a very young person. So, he actually had to have part of his breast bone removed and they left the wound open, and it had to be pack everyday, twice a day with gauze and an iodine thing. And so, my mom could just not do it and my though was, well she can’t, I have to. So every morning before work, I would go and take care of him in that way. Every evening when I came home from work, before he went to bed, I would go over and do the same thing. And that went on for several months. Because I was young and because I really did not have any understanding of what as going on with my father. I mean multiple myeloma, what is that? Not like today. Today there is information. You know you go online, you can find the information. It worked out anyway that I was able to take care of him. I didn’t know that I even had a burnout cause I just continued to do what I was doing. I worked everyday, I had three kids, you jut do what you have to do and I think that’s what most caregivers get to a point of saying to themselves, “I’ll do what I have to do”. And whether they know they have burnout or not, they just do it.

Diahanna:

You know, I think that is very interesting, Patricia, because I think women have a tendency to do that more so than man because we are already maternal. We’re caregivers.

Patricia:

Yeah.

Diahanna:

And we, if someone else drops the ball, and you know we are used to being on call 24 hours a day, 7 days a week, vacation or not. And so, we do always step in and tack up the slack and put ourselves on the back burner. A lot of the time we don’t realize we’re burnout until after the fact.

Patricia:

Way after.

Diahanna:

And we have no more energy. We have nothing else to give ourselves. So Sherea, how would you describe it? How would you look at this?

Sherea:

I would describe…I was a caregiver for my father, now I’m doing some caregiving for my mother who is having some memory issues. And what I can tell you about the feeling is, the feeling of being overwhelmed, the feeling of pressure, and what I notice with is that I have a short fuse. When I’m feeling burnout, things that normally would just not be a problem become an issue. And so, what I try to do is recognize that I’m having a moment and that I’m going to need to step away for a little bit and get recentered. And I do understand that yes, as women, we just do what we have to do, but there does come a point where you have just had it. You’re at the end of the rope. And I’m starting to recognize that more. So it is a feeling of pressure and just being overwhelmed. And the moment I start feeling it, it used to be I kind of just keep pushing, but now the moment I start feeling it, ok let’s work on that now so it doesn’t become an issue later.

Diahanna:

Mhmm. I can appreciate that. When I was taking care of my husband, I probably put myself in a position where I was taking care of him at times when he didn’t need to be taken care of. It was that thing as I felt I could do better or more for him that he probably didn’t know about or I thought he didn’t know about. And I was mistaken on that. It got to the point where I wasn’t sleeping, there was a lot of anxiety, a lot of stress, I wasn’t eating well, and I was getting colds all the time, which I normally wouldn’t get. So my immune system, everything, was messed up as a result of what I was doing. And I remember coming home from work thinking I can’t do this anymore. If I’m going to be a partner to him, I have to step aside. And I called because I was going to every appointment, I was looking at everything, I was doing all the research because he thought he didn’t have to research as long as he felt good, everything was ok. He said, “I’m going to let you be the person that worries because I know you worry enough for the both of us.” And I did. I worried enough for everybody in the household and it was taking me down a path of being mentally, physically, emotionally stressed. And I had to step away and say, “Honey, I don’t need to go to all your appointments. I don’t need to continue to do this.” And that’s how I realized that I was doing way too much and that I was going to be doing a disservice to him – to everybody in my household.

What Role Can Care Partners Play in Advocacy?

/in , , , /by

What Role Can Care Partners Play in Advocacy? from Patient Empowerment Network on Vimeo.

Care partners can play many roles in advocacy. Diahanna, Sherea, and Patricia discuss that as a care partner you have to stay knowledgeable and up to date about various treatments and discussions happening in your loved one’s disease area. Diahanna shares a time where she had to advocate for her late husband by speaking up to the nurse and nearly saving her husband’s life. She also expresses that as care partners, you cannot be afraid to ask questions on behalf of your loved one.

Care Partner Tips for Communicating with Healthcare Teams

/in , , , , /by

Care Partner Tips for Communicating with Healthcare Teams from Patient Empowerment Network on Vimeo.

Ensure that you are in a position to ask the right questions of your healthcare team. Diahanna suggests familiarizing yourself with various online resources so you are aware of the potential needs of your loved ones. Watch as care partners, Diahanna, Sherea and Patricia share more crucial tips to help others communicate with one’s healthcare team.

Resources for New Care Partners

/in , , , , /by

Resources for New Care Partners from Patient Empowerment Network on Vimeo.

Sherea explains that you cannot move forward, unless you are able to acknowledge all the feelings that may come with the initial diagnosis of your loved one. Watch as care partners Diahanna, Sherea, and Patricia also share their tips and go-to online resources for new care partners.

Is There a Difference Between Care Partner vs Caregiver?

/in , , , /by

Is There a Difference Between Care Partner vs Caregiver? from Patient Empowerment Network on Vimeo.

The term caregiver is generally more recognized around the world. Care partners Diahanna, Sherea, and Patricia share that being a care partner is generally more intimate than being a caregiver. Care partners are those who are taking care of family members and loved ones whom they’ve known before any initial diagnosis.

How to Seek Help as a Care Partner

/in , , , /by

How to Seek Help as a Care Partner from Patient Empowerment Network on Vimeo.

When in need of help care partners Diahanna, Sherea, and Patricia share that you should not be shy. There is a tendency for care partners to deny help, but if you are burned out while caring for a loved one you are no good for them or yourself. Diahanna explains caregiving to be a very humbling and rewarding experience.

What Should Healthcare Providers Know About Care Partner Burnout?

/in , , , /by

What Should Healthcare Providers Know About Care Partner Burnout? from Patient Empowerment Network on Vimeo.

Care partners are often able to fill in any gaps at appointments with their loved ones. Sometimes information at a visit can go in one ear and out the other for a patient as it can be a traumatic experience. Care partners Diahanna, Sherea, and Patricia discuss that providers should know that burnout is real and it is important to not only discuss the needs of your loved one, but discuss your needs as well.  

How an MPN Care Partner Handles Burnout

/in , , , , , /by

How an MPN Care Partner Handles Burnout from Patient Empowerment Network on Vimeo.

MPN Empowerment Leads Summer and Jeff discuss care partner burnout. Jeff is the caregiver of Summer who is living with myelofibrosis. Jeff admits to doing majority of the research so he can properly advocate for Summer’s care. In this video, Jeff talks about various outlets he uses to counteract burnout such as photography, music and improv theater.

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657.

 

Transcript

Summer:

Wake up. I’ve finished making your bonbons, Jeff. You said you wanted these.

Jeff:

Thank you, Summer. Mmm.

Summer:

Is it delicious?

Jeff:

It’s delicious. Just what I needed.

Summer:

Well, I’m glad I could please you.

Jeff:

Well, I’m Jeff.

Summer:

I’m Summer.

Jeff:

And we’re your MPN Network Managers for the Patient Empowerment Network. We’re here to talk to you today about…

Summer:

What caregivers do, and sometimes caregivers might get burned out. So, we’re talking about what you can do periodically to not get burned out, to keep going, and being great like you are. What are some of the main things you do, Jeff?

Jeff:

Well, I…one of the main things I do is try to remove myself from worrying about myelofibrosis and Summer’s disease. And I go out into nature and I take a lot of nature pictures. I go to National Parks, and take pictures of scenery, beautiful scenery, and big mammals and stuff, which I really really enjoy doing. It sort of clears my head and really refreshes me. I recently took a trip, as a matter of fact, to Yosemite. That’s one of the things I do.

Summer:

And another thing has to do with music.

Jeff:

Yes, I love music and I play in a band. I play the keyboard and the guitar, and I do that once a week at my church and I really really…again it requires quite a bit of focus and it puts my mind in a completely different place. So I remove myself from the worries, is one of the things I do. I’m very fortunate because Summer is doing quite well and doesn’t need huge amounts of physical care.

Summer:

Right, but you do all of the medical stuff because I can’t stand to hear about medical stuff, it’s boring.

Jeff:

That’s right. I do do a lot of the research and keep up with what’s going on in the myelofibrosis area and that’s kind of what my portion of the caregiving is. We’ve talked before about working with, dealing with these disease requires a team approach: the patient, the caregiver, and the medical team.

Summer:

Right.

Jeff:

It’s very important.

Summer:

And we also do improv. That really helps.

Jeff:

That’s correct. We’ve mentioned before that we run a small theater, and one of the things we do in the theater is improvisational theater. We make things up, now you’ve got to be in the moment, so your head can’t be disclouded and worrying about other things. It takes your mind off of the disease, and in my case, worrying about Summer’s disease and the caregiving responsibilities. So that helps us. It actually helps both of us a lot.

Summer:

Right. So do you want any more bonbons or is that a no?

Jeff:

I’ll just take another bite. You know, if we keep going like this, you could become the caregiver and I’ll be the patient. So until next time, I’m Jeff.

Summer:

I’m Summer.

Jeff:

Bye!

Summer:

Bye!

Care Partner Profile: Mike Crocker

/in , , , , , , , /by

The first time Mike Crocker became a care partner was in 2016 when his wife Dr. Gerri Smoluk was diagnosed with Acute Myeloid Leukemia (AML). The second time was in 2020 when, after being in remission for four years, Gerri was diagnosed with leukemia again. The two experiences couldn’t have been more different, says Mike.

Gerri’s first diagnosis came shortly after she started a new job. Gerri, who had a PhD in biochemistry, worked in the pharmaceutical industry. She was feeling tired a lot, but she was brushing it off, blaming it on the stress that comes with a new job. However, Mike urged her to see a doctor, so Gerri had a coworker, who was also a doctor, check her out. The coworker sent Gerri directly to the emergency room. She was admitted and was in the hospital for 45 days undergoing chemotherapy. “She had a very severe case,” says Mike.

It was overwhelming to say the least, but Mike quickly took on the role of caregiver. He soon realized that the simple things were the most helpful. Mike made sure to bring Gerri some of the comforts of home. He made sure she had t-shirts and sweatshirts to wear instead of hospital gowns. He brought Gerri her laptop and yarn for crocheting. He brought her the few foods that she could actually taste after the chemo wiped out her taste buds. Mike was also her sounding board. He listened as she talked through her care options and how they would affect her quality of life. He was simply there for her, walking with her daily so she could get some exercise and maintain circulation, so she didn’t have to stay in bed with the compression sleeves on her legs. “I did all the little things that could help her be a little more in control and have as close to a normal day as possible,” says Mike adding that Gerri’s background in biochemistry and the pharmaceutical industry gave her unique insight into her care. “She started charting her tests and data so she could be a part of the solution and have informed discussions with doctors. She wanted details and wanted to know what to expect.”

Mike and Gerri learned that patients and care partners are given overwhelming amounts of information and that they have the responsibility of learning all they can and asking questions and making decisions. He says that doctors aren’t always keeping up with the latest research and that it is easy for them to get stuck in routine treatments. He found that doctors talk about options based on their experience and their skill set, but that doesn’t mean that approach is best for the patient. He says that being comfortable with the doctor and getting a second opinion if wanted are also important. He and Gerri learned to be active participants in her treatment and care.

In addition, Mike and Gerri were always looking ahead and focusing on the future. He concentrated on keeping her spirits up. When she was bald from chemo Gerri was looking at wigs and Mike says he encouraged her to go wild and get a bright red wig. “She didn’t go for it but being outrageous and adding humor to the moment was a way for me to help,” he says.

It was while she was in her fourth year of remission that Gerri found Patient Empowerment Network (PEN). “Gerri liked PEN’s focus on making the information understandable for patients, giving them easy-to-digest information to make decisions,” says Mike. Gerri jumped right in and helped to develop the Network Manager program which launched in March 2020. The program is made up of volunteers around the country who use their own patient experience to support patients and their care partners through their own cancer journey and on to a path to empowerment. “PEN is very important because it is patient-focused,” Mike says, and that’s why PEN appealed to Gerri. She liked that she could use her scientific background to help patients understand the information and to make sensible decisions for themselves. Gerri served as the AML Network Manager and was named a finalist for the 2020 Reuters Patient Champion Award in the Patient Advocate category.

Then in July 2020, Gerri got her second diagnosis. She celebrated her birthday July 7 and a week later, Gerri was back in the hospital. “This time she had a second type of leukemia which threw doctors for a loop,” says Mike. “Usually when leukemia patients relapse, it’s with the same type of leukemia.”

Although they had been through a leukemia diagnosis before, this experience was nothing like the first. “It was very different. It was during covid so of course, unlike before, when she could have friends drop in, she no longer could have visitors. Everything was more restrictive with covid,” says Mike. “At least I could be there every day.”

This time, Gerri and Mike were not expecting a longer hospital stay. They were expecting outpatient treatment that would be easier, and they were looking forward to time away from the hospital. The first time was so scary, but this time they were experienced, and they knew what to expect, but what they expected is not what happened.

After about a week Gerri got worse. Doctors were trying to figure out what was wrong, but they were unable to save her. Gerri died July 27, 2020. The autopsy revealed she had an antibiotic resistant bacterial infection.

More than a year later, Mike says he’s doing okay. “Everyone handles it differently,” he says. “You have to give yourself permission to not be happy and also give yourself permission to keep going and find other things to fill the hole.” In September 2021, he retired from his career as a web project manager, and recently he reached out to PEN looking for a way to use his skills to help others. “Gerri was the driver, so now I’ve been drifting,” he says. “That’s why I contacted PEN. I wanted to do something of value.”

Mike will be an invaluable addition to the PEN network of volunteers.

How Can Myeloma Caregivers Provide Support?

/in , , , , , , /by

How Can Myeloma Caregivers Provide Support? from Patient Empowerment Network on Vimeo.

Some multiple myeloma caregivers may be unsure or overwhelmed in how to move forward in supporting a patient. Expert Dr. Rafael Fonseca shares advice for caregivers to assist in practical matters, decision-making, and providing emotional support to their loved one.

Dr. Rafael Fonseca is the interim director of Mayo Clinic Cancer Center and serves as the director for Innovation and Transformational Relationships at Mayo Clinic in Arizona. Learn more about Dr. Fonseca here.

See More From Engage Myeloma

Related Programs:

Who Is on Your Myeloma Healthcare Team?

What Are the Goals of Myeloma Treatment?

What Key Questions Should Myeloma Patients Ask About Treatment?

Transcript:

Katherine: 

We have a question from the audience. This one is from Sarah. Her question is, “What advice do you have for caregivers? How can I be supportive during appointments?”

Dr. Fonseca:

That’s a great question.

I have experienced this both as a physician, as well as a caregiver myself to someone who has had a cancer. I think I’m going to say that there are several roles that caregivers play. Some of them are obvious and I’m going to call them practical or perhaps even pedestrian, you know, organizing the activities of every day. That’s important, but a lot of people can do that. The second role is to be in assistance for the knowledge that is needed for some of this decision-making. Sometimes patients can be overwhelmed, and we need some support and some vetting and peer process from a trusted and loved person so you can go through that.

That is very helpful, but what is essential, and the number one thing is you are first and foremost the loving family member or friend of that individual who is living through a very profound human experience. I think the first role of a caregiver has to be to express that role.

I, myself, reflect on moments where perhaps in a quick, reactive way I wanted to solve some of the immediate practicalities and what was needed most was a direct support. Even if I face a situation today, if I was, again, a caregiver for someone with a serious diagnosis with cancer, I would start with that priority. Number one, you are the support and the loving person. Number two is I will try to provide information. And number three, hopefully you can help with meals and the driving and what have you. But there’s many more people who can come and help in that regard. Not a lot can do the first part.

MPN Caregivers: How to Provide Support During Appointments

/in , , , , , , , , , /by

MPN Caregivers: How to Provide Support During Appointments from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) caregivers provide support during office visits? Dr. Naveen Pemmaraju shares key advice for caregivers to help improve and increase communication with healthcare providers for the sake of their loved one.

Dr. Naveen Pemmaraju is Director of the Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Program in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Pemmaraju, here.

See More from Engage

Related Programs:

Is the COVID-19 Vaccine Safe and Effective for MPN Patients?

Is the COVID-19 Vaccine Safe and Effective for MPN Patients?

 Myeloproliferative Neoplasms Defined: What Are ET, PV, and MF?

Myeloliferative Neoplasms Defined: What Are ET, PV, and MF?

 What Are the Considerations When Choosing Myelofibrosis Therapy?

What Are the Considerations When Choosing Myelofibrosis Therapy?

Transcript:

Katherine Banwell:    

Well, we have another audience question. This one is from Richard. He wants to know what advice do you have for caregivers, and how can he be supportive during appointments?

Dr. Pemmaraju:         

Yeah. Richard’s question really is so important. Really, before the pandemic and now with the pandemic this extended time, this is the most important question that’s coming up. This is a challenge. I think a lot of our patients who are older, frail, live alone, they don’t even have the option to do that. That may be 25 percent of our patients right there,

And that’s very heartbreaking and difficult, and clearly, their care – it may not be compromised, but it’s certainly limited in some ways without getting that other perspective. Right? So, I think that’s important.

Now, out of the 75 percent of the people who may have someone that can be a part of their life, a lot of these folks, Katherine, are limited because of the pandemic. Most hospitals, smartly, I think, still have restrictions on not allowing every single person in the building just for health and safety protocols. So, telehealth has had to be a substitute, I would say, for that, and in a lot of cases, has been helpful. In some cases, frustrating, obviously, with technical difficulties, etcetera, etcetera.

I would say that the key is – and I really want this to be very specific. It would be easy to just say, “Yep, bring a loved one to your visit.” No, it’s not that easy, right? So, now, during the pandemic, I think two things are very important and what I’ve noticed. One is, if the patient is able to, if their health allows them to, prime the loved one or caregiver, “Hey, I’m going to be in the doctor’s office from this time.”

And I always say make it like the cable person visit, right? From 8:00 to 5:00. So, “Hey, today, on Tuesday, if you can have your cell phone on you, that would be nice, because I’m going to patch you in, and you can listen in the background.” This is actually a key pearl I can give to people. You’d be surprised how helpful that is. Because most people, if they’re not living in the same household or whatever – “Oh, I didn’t even know you were going to be – okay.”

Number two, when the loved one or caregiver is involved, which I encourage for everyone, try to discuss with them the night before, if your health allows you to, to go over some of the key questions. Say, “Hey, guess what? I only understand about 7 to 10 percent of what goes on in these visits, but I need you to ask this.” So, you can kind of prime your loved one to do that.

And then, lastly, you had mentioned earlier to have this list of questions. Well, that’s a great thing to give to the caregiver, right? So, if you’re able to use email and your family member is in California and you’re in Texas, maybe a quick email the night before.

“Hey, here’s what I’m thinking. In case I forget, will you ask this to the doctor?” A lot of these visits may only be five or 10 minutes, but you’d be surprised, if you have a list of two or three questions – boom, boom, boom – and then it’ll alleviate those worries there.

Lastly, I would also say don’t feel – I want to tell this to the viewers out there. Don’t feel pressured when you’re in the visit with us that you have to get every single thing out. And what I mean by that is now with email and the electronic medical record portal systems, there is some ability to contact people during – I’m sorry, after and between visits. So, maybe that might help you to not feel so much pressure in the visit.