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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

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.

F Words in Rare Disease

A dad I know recently posted a photo and shared his excitement on Twitter about a new set up for his bike with a trailer for his son. Its overall purpose being an opportunity to do more stuff together as a family. I wholeheartedly shared in his excitement as I too had been putting money aside to find more opportunities for my own family to get outdoors more. Both of us are parents of children who were born with a rare diagnosis. Our kids have different rare diagnoses, but like all families we are eager to connect with the greater world around us and share it with our kids however we can.

My own kiddo is going to be thirteen this year, and we are at a turning point in the discussion of overall health. We are off-book and off script as there’s nothing that clinically describes this age range for his specific diagnosis. Anecdotally, he seems to be following his own trajectory for some inexplicable reason deviating from other children I know with this diagnosis. I’m at the hospital more professionally than I am as mom of a patient which to some audiences the reaction is, “Yay! Your family gets a break! So everything is fine now, right?”. The reaction from fellow parents of palliative patients is, “I’m so sorry”, because they realize the fight is over. That life is going to do whatever it is its going to do. The hospital is still there if you need them, but your frequent family vacation time at “Club Med” is to be replaced with a new family dynamic and new identity as take a go at life more on your own.

Health care is quickly deviating from textbook, generalized care to something highly individualized. This in theory is a great concept but is extraordinarily multifaceted in its impact on patients affected by rare disease. As someone who manages a support group of over 800 patients and caregivers from my home province, I find a deep desire to ask in some capacity whether we are prepared for the pace of advancement. A long-term goal I have in mind is to create a biopsychosocial assessment of the needs of families. For now, I can say for as much new information as I bring to the proverbial table, it’s so often met with, “How do I fit this into my complex world?”.

I hesitate to use the term ‘finding balance’ at all, because if there’s one thing I think many of us rare patients and families experience is more of a need to manage random health chaos. The status of my own family can shift on a dime and you have to learn to be very much ok with that because you have no other choice than to.

So how does one even begin to manage understanding how to frame your life and all the decisions you have to make? For a little over four years, I’ve been working as a parent researcher and engagement facilitator with a focus on the subject of childhood disability. One concept we often speak on is the World Health Organization’s International Classification of Functioning, Disability Health. A simplified version of a very technical document is called “The F Words in Childhood Disability”. Now these are concepts that I wish to argue merit for as a way to create form to thoughts and efforts that you are probably doing already. At the same time, it can become very validating and empowering to realize that current evidence points to the fact that you are already on the right track. These are ideas upon which a potential framework can be created in your own mind as to goals that can be accomplished, or a way to weigh decisions that need to be made. We are often so focused on the burdens of disease, that we need a compass of sorts to point us back to the idea that life is happening around us and time can often be a precious commodity. They are six words that reflect the story that’s unique to you or your family and nobody else.

Function

There is often a need to perform tasks in ways unique to their own abilities. If independence in some areas can be fostered, we need to be able to honor that.

Family

Family isn’t always about people you are genetically related to. People react to the idea of illness very differently and in some cases, you need to seek community and “family” elsewhere. Regardless, the people in your life that you surround yourself with are people that are important to you. It’s important to listen to them as they know you best.

Fitness

As a post-cancer “spoonie” myself, I often bristle a bit on this subject. Between my own struggles with energy and the physical impact of caregiving, I’ve found it difficult to find the energy to be healthy. However, your story isn’t my story and in reality it can be intensely difficult to find ways to be healthy. In the area of rare disease, I think health becomes a broader term by definition: overall health takes on many forms be it mental or physical health. We often term health as some sort of fitness guru Instagram aspiration, but sometimes overall improved health comes from even the tiniest of steps and even the little efforts deserve to be celebrated in a huge fashion.

Friends

Existing around peers can take on many forms, and in order to do so sometimes we need to be brave and reach out to others for more accessible ways to connect with friends. What can’t be ignored is a human being’s overall need to connect with other people as we learn and grow together.

Fun

In a world that can be taken up so much with appointments and treatments, its so important to stop every now and then and have fun, be silly, briefly escape the world and just plain live. Fun can take on so many different things.

Future

So much definition of future is often left to the financial planners of the world in regards to careers, academics and whatnot. Sometimes the future is only planning ahead 15 minutes at a time or a week from now. As hokey as it sounds, with age I’ve begun to see the value and emotional weight the phrase “one day at a time” holds in my life. I’ve been asked more times than I can count as to how I picture my family’s future. My response remains that I really am not gifted with that luxury, ask me what I’m working on for tomorrow.

I have seen these terms be threaded through my life in so many ways. Sometimes you are only focusing on one F word at a time and there’s no judgement in that at all. I like any other mom am someone who struggles with whether or not I’m doing a good job. I think the gauge by which I measure this is probably unique to my own personal story but I know that I am not alone in this feeling. I feel though with the F words, I have a more confident platform to stand on not to be his voice but to be his microphone. There’s so much I can’t control in life but as his mom I want to help him own every second as his life to live. So in celebration of birthday number 13, we’re taking “fun” as our next goal and bought a bike trailer too! I know he’ll love it.

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

Wondering how YOU can advance MPN research?

September is Blood Cancer Awareness Month and we’ve spent the month focusing on ways you can become a more empowered patient. If you missed our recent webinar: What YOU can do to advance MPN Research, the replay is now available. As always, we’d love to hear from you about ways you’ve empowered yourself!

Finding Meaning After the Caring Is Over.…

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

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

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

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

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

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

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

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

The Importance of Caregivers

In honor of November being National Family Caregivers Month, we wanted to highlight the importance of family caregivers. A family caregiver is a person who provides any type of physical and/or emotional care for an ill or disabled loved one at home. Loved ones in need of care include those suffering from a physical or mental illness, disability, substance misuse or other condition. In most cases, the primary caregiver is a spouse, partner, parent or adult child. Caregivers often take on the responsibilities of the patient while still providing for themselves and other family members. Some important tasks and roles of a caregiver are:

Advocate. Sometimes patients are not completely forthcoming with their physical or emotional needs and tend to downplay their pain when speaking with doctors. Caretakers play an important role in honest communication between doctors and patients by upholding patient preferences for treatment options when the patient cannot or will not speak for him or herself.

Personal Care. Caregivers may help with daily activities such as dressing, bathing, toileting, or arranging child care.

Household Tasks. Caregivers are often in charge of preparing meals, doing chores or laundry, shopping for groceries or paying bills.

Emotional Support. When faced with a serious diagnosis, patients are often overwhelmed by the emotional and physical turmoil. Caregivers are tasked with the important duty of providing support and encouragement for the patients as well as themselves. Communication is key in the relationship between a caregiver and a patient. It is important to both openly share feelings and remain empathetic to the situation.

Medical Care. Caregivers must be present, take notes, ask questions and assist loved ones in making decisions with the care team. They may also be responsible for administering, ordering, and picking up medication, providing transportation to appointments, and dealing with scheduling, billing, or insurance issues. Caregivers may also assist with other medical processes such as physical therapy, injections, feeding tubes, etc.

There are close to 65 million caregivers in this country alone. The estimated monetary value of family caregivers’ unpaid contributions was estimated $450 billion in 2009, though the true value of caregivers far exceeds any monetary worth. In honor of National Family Caregivers Month, we would like to thank all of those who aid in the care of those in need.

Resources for Caregivers: National Alliance for Caregiving


References:

http://www.netofcare.org/content/getting_started/

http://www.cancer.org/treatment/caregivers/copingasacaregiver/if-youre-about-to-become-a-cancer-caregiver

Lung Leavin’ Day

Interview With Cameron Von St James, husband of Heather Von St James, survivor advocate for the Mesothelioma Cancer Alliance and founder of Lung Leavin’ Day

Cameron and Heather Von St James with their daughter

Cameron and Heather Von St James with their daughter

Kara:

Describe what Lung Leavin’ Day means to you.

Cameron:

Lung Leavin’ Day is a special holiday for my family. It is a time where friends, family, and mesothelioma community members can all gather at our home- and connect and share our fears and overcome them together.

Kara:

Why did you decide to create this “holiday”?

Cameron:

Lung Leavin’ Day is a tradition that my family started after my wife Heather was about to undergo a highly invasive and risky surgery as treatment for her mesothelioma cancer. Mesothelioma is a cancer, known to be caused by exposure to asbestos. Taking from the tradition of firewalking- we write our fears on a plate and smash them into a fire. The day is about celebrating overcoming fear, feeling a sense of strength and hope when you need it most, and celebrating Heather’s survival!

Kara:

When your wife was first diagnosed, how did you offer her support?

Cameron:

When Heather was first diagnosed, we were both in a state of shock, and confusion. Wasn’t this a disease that old men got? How could she only have 15 months to live? She is a young and seemingly healthy woman. After Heather’s treatment, I unfortunately had to return to work in order to support our family. So Heather stayed with her parents in South Dakota, while I was in Minnesota working. That was a hard time on us because I had to be a caregiver from a distance. I couldn’t see her everyday, and that was really hard.

Kara:

What do you think are ways caregivers can help cancer patients feel more confident and empowered?

Cameron:

Focusing on the things that you can control is really important. During a patient’s cancer experience they may feel helpless, like there is nothing they can do that is within their power. That is not true, and as a caregiver to be able to contribute positively to their sense of confidence can play a huge role in helping them maintain a positive mental attitude. Showing personal strength and fortitude during adverse times can be contagious, and reminding them that they are loved, and appreciated regardless of their cancer experience.

Kara:

What have you learned from this experience?

Cameron:

That anyone can have mesothelioma. The disease is commonly thought of as an “old man” disease. But there are many people out there like Heather, who were exposed as a child. Heather would wear her father’s work jacket as a young girl to do outside chores, and unknowingly, that jacket was covered in asbestos fibers. There are 60 countries around the world that have banned asbestos, and the U.S. and Canada have not. Anyone could be at risk until there is a global ban on asbestos.

Kara:

What advice would you give to other caregivers whose loved ones have been diagnosed with cancer?

Cameron:

As caregiver, it is really easy to neglect yourself. Don’t neglect your own social and physically wellbeing. If you yourself are not 10 years FBready to fight this, then you have nothing that you can give to the fight. Actively remind yourself to take time for you. Caregivers need care too. Stay organized. Their cancer experience is going to become yours to bear as well, so you have to learn to balance their treatment, symptoms, appointments, and all of that with your own life. When people ask how they can help, if you are organized, you will have specific things that they can help with. Give them the opportunity to be involved in a productive way.

Kara:

What were your thoughts when your wife’s doctor recommended an experimental procedure?

Cameron:

Heather and I were presented with three treatment options based on her diagnosis. If we chose to do nothing, she was expected to live 15 months. If she chose the route of chemotherapy and radiation treatment, she was expected live for 5 years. But there was a third option. It was clearly the riskiest, but it had the potential for her to survive this. The treatment involved a surgical procedure called an Extrapleural Pneumonectomy with Dr. David Sugarbaker at the Brigham and Women’s Hospital in Boston. The surgery involves removing her left lung, pericardium, diaphragm and pleura. There really wasn’t much of a choice between the 3 options, we had a newborn at home, Heather and I knew we needed to get to Boston, and beat this cancer.

Kara:

Did you ever seek a second opinion?

Cameron:

Luckily Heather’s doctor never wrote off her symptoms as something postpartum, and really listened to her concerns. She was referred to Dr. Sugarbaker, a world-renowned thoracic surgeon. We knew we were in the hands of the best care possible. Heather continues to see Dr. Sugarbaker every 6 months today.

Kara:

What do you hope will come from spreading awareness about Lung Leavin’ Day?

Cameron:

We want to provide hope to those going through something similar in their life. Everyone has a battle to fight, and Heather and I want people to know that you are not alone, and you shouldn’t be ashamed or paralyzed by your fear. Once you acknowledge them- whether it is writing them down, or sharing them with someone, you are one step closer to overcoming them.