Top Tips and Advice for Prostate Cancer Patients and Caregivers Navigating Treatment

Top Tips and Advice for Prostate Cancer Patients and Caregivers Navigating Treatment from Patient Empowerment Network on Vimeo

What should prostate cancer patients and caregivers know about prostate cancer treatment? Dr. Leanne Burnham shares advice for patients with concerns about treatment side effects, information about active surveillance, and some specific advice for Black men with prostate cancer.

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

Related Resources:

 

What Are Some Hereditary Factors Impacting Prostate Cancer Patients?

Should Prostate Cancer Screening Happen at an Earlier Age for Certain Patient Populations?

How Does Stress Correlate With Your Prostate Cancer Diagnosis?

 

Transcript:

Dr. Leanne Burnham

Yes, so it is a couples’ disease for sure, and you want to make sure to do a little bit of your own research. Make sure that your doctor knows how this disease affects Black men differently, because what I see a lot of time, even in my own family, my husband’s family members that get prostate cancer and they come to me, a lot of times, their doctor will recommend active surveillance. And it may not be appropriate for African American men if you look at the research and you look at the studies. And so, it may benefit you to just ask your doctor, “Do you treat a lot of Black patients, or do you see any difference in their survival rates versus your other patients?” And really consider that when you’re thinking about whether to do active surveillance or not. Once it gets time for treatments, one thing when I — because I talk to a lot of men and support groups, and men are scared, they don’t want to lose their urinary function, they don’t want to lose their sexual function. And so, they’re nervous about certain diseases and in terms of surgeries and radical prostatectomy, there are nerve-sparing surgeries now to really protect that function afterwards, and there are exercises that can be done afterwards to also help improve, and so ask the nurses in your setting, “What are some of those exercises that can be done?” But one thing to keep in mind is every treatment comes with its sort of risk, right?

So, no matter whether you choose radiation or surgery, there’s always a risk that you may lose some of that function, what I tell men, and not to sound not sensitive to the matter, but a lot of men, they’ll say, you know, “Oh, if I get this treatment and what if I can’t have sex anymore?” You’re not going to have sex when you’re buried 6 feet underground either. And so, you want to be able to get those treatments, the ones that you and your physician have a shared decision in and in deciding what’s best as a couple. But you don’t want to be naive if you’re at the doctor and you have a really elevated PSA and you have a Gleason score of 8, and your doctor is telling you, “We really need to treat this,” you don’t want to shy away from that, because you’re scared of the side of the side effects in that setting. You can look for where the best surgery center is if they have the nerve-sparing surgery, as I said, and explore your options that way. But don’t put it off so long, because you’re worried about the side effects. And if you don’t get treatment and your doctor wants you to, as time goes on, you’ll lose the urinary function and the sexual function anyways.

So yeah, it’s not something that you want to put off because you’re scared about the side effects. And a lot of men do have side effects temporarily, and then they regain their function, and I really encourage to join support groups virtually now because of how the role is set up. But just talk to some other men that have had some of these procedures and see how they’re doing. And I personally haven’t met a man that felt like, “Oh, I have been cured from prostate cancer, and now I have the side effects, and I wish I wouldn’t have had the procedure,” I haven’t met one. And I know in those who have side effects and they had surgeries and 10, 15 years ago, and they have side effects, I’m not going to act like that doesn’t happen. But none of them have ever expressed to me that they wish they could go back in time and not do that, because, at the end of the day, they’re grateful that they are still here with their loved ones.

Essential First Aid Tips For Cancer Caregivers

First aid is an essential skill — however, 70% of Americans feel unprepared for a cardiac emergency because they either don’t know how to administer CPR or their training has significantly lapsed. It’s important for caregivers of cancer patients to be trained in first aid, so they’re fully-prepared and ready to act in emergency situations. This includes knowing how to administer CPR, looking out for the common signs of infection, and helping patients manage the emotional symptoms of cancer.

Administering CPR

Chemotherapy damages healthy cells in the body, including cells in and near the heart. As a result, cardiac toxicity and conditions like arrhythmias (abnormal heart rhythms), congestive heart failure, cardiomyopathy (the heart struggling to send blood around the body), angina (chest pain), and myocarditis (inflammation of the muscular layer of the heart wall) can occur. In these situations, a cancer patient may need CPR, which, if unsuccessful, may need to be followed up with an AED (automated external defibrillator). An AED can help restart the patient’s heart and re-establish the natural rhythm of the heartbeat. First aid training is essential for anyone caring for cancer patients as it covers how to administer CPR correctly. Caregivers should also inform themselves of the patient’s resuscitation wishes in advance.

Preventing infection

Cancer and cancer treatment weakens the immune system, which in turn increases a patient’s risk of infection. Additionally, cancer patients can have a low white blood cell count (neutropenia), which further weakens the body’s ability to fight infection. Symptoms of infection to look out for in cancer patients can include: fever, sore throat, shortness of breath, belly pain, and chills potentially followed by sweating. In this case, caregivers should check the patient’s temperature with a thermometer, keep the patient hydrated, and help them take their medication on schedule. If the patient has a high or low temperature, can’t take fluids, or simply doesn’t seem “right,” take them to the emergency room and let the staff know they’re in treatment for cancer.

Emotional first aid

One third of all cancer patients experience high levels of mental or emotional distress that meets the strict diagnostic criteria for mental disorders, including depression or anxiety. As such, emotional first aid becomes an important part of caring for cancer patients and their emotional health. In particular, anxiety can result in shortness of breath, hyperventilation, and chest pain. It’s therefore essential to learn deep breathing techniques to help affected patients stay as calm and pain-free as possible. Alternatively, depression can manifest symptoms like low mood, irritability, insomnia, excess sleepiness, and suicidal thoughts. Be sure to familiarize yourself with the signs and symptoms of depression and begin an open dialogue with the affected individual to provide them with support and treatment if necessary.

First aid knowledge and skills are an essential part of caring for people with cancer. It’s important caregivers have the right first aid training, knowledge, and skills to help patients in emergency situations.

The Caregiver Impact: A Vital Part of Healthcare

Carly FlumerCarly Flumer is a young woman who was diagnosed with stage I papillary thyroid cancer at the age of 27. She recently received her Master’s degree from Boston University […]

Braving the Caregiver Storm

As I sit here looking out the window at the snow that is beginning to fall, I am transported back to January 2011 when I was 28 and my 35 year old husband was diagnosed with leukemia. I was thrown into a snow storm I was definitely not prepared for nor did I think I’d be in. I had little visibility in front of me as the snow fell and flew all around me. I knew cancer was something that had been around for a very long time, and that the knowledge was out there…but as a young woman, I was standing in my own little snow globe without boots, a scarf, or mittens. I had my marriage that I wrapped around me like a warm coat, and held onto that while I attempted to find resources to guide me thorough this new life of mine.

My days of working full-time, then coming home to relax had been exchanged for quick trips to let the pets out after work, then jetting over to the hospital to spend a few hours with my husband before driving back home to spend a few minutes with my pets before going to bed and starting the cycle all over again. I was exhausted and had to figure out how to get warm, protect myself from the elements and survive!  However hard and unknown it all was, I found comfort in knowing that although I was the only young person I knew to go through what I was, millions of people had done it before and I could too. I didn’t know how I was going to do it, but knew I would somehow.

I began to gather resources online by spending hours upon hours late at night on the internet. I looked up financial resources to help with gas cards, how to navigate insurance, disability, and requested all of the brochures possible from the Leukemia and Lymphoma Society and the American Cancer Society. As I gained more knowledge, I felt myself slip into a warm pair of boots, feeling like I had more secure grounding. I was better informed and felt more armed to walk down the road of the cancer journey, despite still not being able to see through the masses of swirling snowflakes and at times, sleet.

I quickly realized that one of the most major parts of this journey was to take care of myself. At first it felt somewhat selfish, as my husband was the patient…however I had to figure out what worked best to keep my batteries charged and running, even when the snowy road threw my tires into a ditch. I started creating blog posts to inform and update our supporters on CaringBridge and Facebook, which allowed me to feel safe, supported and heard, while still having boundaries to not be overloaded via text, phone and email from all of those that wanted to know how things were going. This social support provided the needed warmth on my hands, giving me mittens to keep from getting frostbite from the dangerously low temperatures here in Minnesota.

I learned that taking time away for myself whether it be a cup of tea with a friend, taking a nap, a walk or binging a favorite TV show, was what I needed to do to be able to recharge my batteries to be in the right mental and physical space to be there for my loved one. Caregiver burnout is very real, and I often burned the candle at both ends, learning the hard way why self-care needed to be more of a priority in my life.  I don’t think that our supporters and loved ones can fully grasp or understand why it is so important to go to dinner with friends or to a movie or concert (outside of Covid-19 times of course), when your loved one is in the hospital or stuck at home.  What those that aren’t going through what you are in this crazy world of cancer don’t know is how hard it is to balance it all. Cancer is the belligerent relative at the holiday gathering that no one really knows how to deal with or control. They are there for better or worse, and it’s up to you to know how to balance and work with what you’ve been given.  When you take the time to understand and embrace what is….you can feel more at peace in taking the cancer process day by day, if not hour by hour.  You have to let the little things go, your house may not always be sparkly clean and everything may not get done- but the cancer patient has everything they need and you are a more balanced person to support them. Once I figured out how to balance things better, a scarf was wrapped around my neck, and I was better prepared for the snowstorm.

Cancer is definitely not something that is asked for, however with adequate resources, knowledge, social support and the practice of self-care, it is all doable.  I was able to take my experience as a cancer wife, then widow and beyond to create a book to share with the world on how I navigated the cancer world one day at a time, and live today with such thankfulness for the journey that brought me here today. I still absolutely love snow, and am excited for the snowstorm that is supposed to hit this afternoon with 4-7 inches, as I now know the ways to make sure I am storm ready to walk through the journeys in front of me, as you too, walk through your own snowstorms as well.


Caregiver Support: Taking Care of YOU

Caregiver Support: Taking Care of YOU from Patient Empowerment Network on Vimeo.

Prostate cancer caregivers support patients in many ways, but also need support for themselves. Social worker Linda Mathew details the role of caregivers and shares resources to help them maintain their own self-care.

Linda Mathew is a Senior Clinical Social Worker at Memorial Sloan Kettering Cancer Center. Learn more here.

See more from The Pro-Active Prostate Cancer Patient Toolkit

Related Resources

How Can a Prostate Cancer Social Worker Help You?

Why You Should Speak Up About Your Prostate Cancer Care

Tools for Managing Prostate Cancer Fear and Anxiety


Transcript:

Linda Mathew:

So, caregivers have a really important role in caring for their loved ones, so whether it’s their spouse, or a sibling, or a child, they – their role 1). Is to advocate as well for the patient in terms of saying, “Hey, you know what? Let me call the doctor’s office. This side effect was on the list, but I’ve noticed that it’s ongoing, so let me reach out to the office for you if you’re not feeling well.”

They are the eyes and ears for their patient or for their loved one in terms of just saying, “Something is not right. Let me call.” And, most of our nurse practitioners or nurse office practice nurses will say to the caregiver, “You are our eyes and ears when you’re at home. When the patient is here, we’re the eyes and ears for that person to assess what’s going on.”

But also, the caregiver really – sometimes, what happens is there’s a role reversal, so they become that emotional support for the loved one, the financial support, practical support, and also the spiritual support for their loved one, and we remind them that is your – that is a huge role to play, and there’s no handbook for it, but we have resources for you, so you’re not alone in that process.

And, the one thing we really stress is here at Memorial Sloan Kettering Cancer Center, we recognize the important role of our caregivers and how important they are to the loved one that they’re caring for. So, with that resource-wise, the social work department has a program called Reach for Caregivers, and it’s a hospital-wide program that we offer support groups as well as educational workshops.

And then, in November, being Caregiver Month, we put on a lot of different programs just for our caregivers to know we recognize you, we know you need the support, so here it is. So, in terms of support groups we offer, it’s all online because we know that sometimes, the caregiver is also working outside of the home, so to help meet them where they are, we’ve offered an online support group that they can tap into during their lunch hour, or even after work.

How Can a Prostate Cancer Social Worker Help You?

How Can a Prostate Cancer Social Worker Help You? from Patient Empowerment Network on Vimeo.

How can a prostate cancer social worker help patients and their families? Linda Mathew, a senior social worker, shares how she provides support for patients and their loved ones after diagnosis, during treatment, and beyond.

Linda Mathew is a Senior Clinical Social Worker at Memorial Sloan Kettering Cancer Center. Learn more here.

See more from The Pro-Active Prostate Cancer Patient Toolkit

Related Resources

Tools for Managing Prostate Cancer Fear and Anxiety

Why You Should Speak Up About Your Prostate Cancer Care

Caregiver Support: Taking Care of YOU

 


Transcript:

Linda Mathew:

Hi, I’m Linda Mathew, and I am a senior social worker here at MSK. I am a supervisor in the Department of Social Work, but I also have a service, and I work with the urology service, so, both medicine and surgical patients.

 And, really, it’s just – I’m here as clinical support to our patients in terms of individual counseling, couples counseling, family counseling.

So, what we really do is we provide supportive counseling to our patients. So, in terms of when we say “supportive counseling,” if patients are anxious, or have some depression around the diagnosis, or have just fears around what that – what it means to have a cancer diagnosis and the uncertainty about what that journey will look like, they are referred to me to just process that out loud in terms of questions about themselves and how – how are they going to manage a diagnosis if they’re going to be on chemotherapy or questions about how to support their family around this diagnosis if they don’t even know how to have this conversation with their family.

Most times, if it’s a couple that come in, it’s around how do I support the patient as well as the caregiver through the trajectory of this patient’s treatment. So, the patient is dealing with their own diagnosis and treatment and what all that means, and the caregiver is also having a parallel process with this where they are caring for the loved one, but also have their own fears about “How do I navigate being a support to them? I don’t know what it means to be a caregiver for somebody who’s going through medical treatment.”

So, we help slow that down for them and say, “These are the things that you need to look out for. Just – you are their extra advocate. You are that person – their eyes, their ears – when they are not able to call the doctor’s office to be able to say, ‘I can call the doctor’s office with this information. Just tell me what you want me to say.’”

But, you’re also just there as a support, so it’s a really weird kind of…reminding our patients the tools that they already have, but because they feel like they’re in a crisis, they forget what those tools are.                

Please don’t feel like you have to figure this out on your own. Your medical team is here for you, social work is here for you, we have an ancillary service – like, services available in terms of the men’s sexual health clinic integrated medicine counseling venture, all in terms of supporting our patients. So, when in doubt – and, if you don’t know who to turn to, just turn to your social worker and ask them. Say, “I need help,” and we’ll guide you through it.

Living The Role of The Cancer Caregiver, With Kandis Draw

This WE Have Cancer podcast was published on December 17, 2019 here.


https://open.spotify.com/episode/7LFbOGoGONWtTbTBAkS3h9

Kandis’ mother succumbed to cancer in 2014. Not only was she her mother’s caregiver she also was charged with caring for her younger siblings. During this time she was literally burning the candle at both ends. During this conversation they discuss:

  • How she wished she knew of the resources available to support her during such a difficult time in her life.
  • The importance of reaching out to people in similar situations as a source of support.
  • The importance of self-care when serving as a caregiver and the enormous challenges she faced while caring for both her sick mother and her younger siblings.
  • How her relationship with with her mother blossomed during her illness.
  • The stigma in the African-American community around going to psycho-therapy and what motivated her to seek support.
  • How she coped with her mother’s passing.

Anxiety Management for Patients and Caregivers

This podcast was originally published by The Cancer Cast with Weill Cornell here.

 

Kelly Trevino, Ph.D., Clinical psychologist at Weill Cornell Medicine and NewYork-Presbyterian Hospital – Speaker Bio
  • Why anxiety management is so important for all those affected by cancer, plus actionable coping strategies.

    Guest: Kelly Trevino, Ph.D., a clinical psychologist at Weill Cornell Medicine and NewYork-Presbyterian Hospital.

    Host: John Leonard, M.D., world-renowned hematologist and medical oncologist at Weill Cornell Medicine and NewYork-Presbyterian Hospital

How To Be A Better Caregiver When A Loved One Gets Sick

This podcast was originally published on National Power Radio on July 12, 2019 here.

None of us are prepared to be caregivers — the role is thrust upon us.

Maskot/Getty Images/Maskot

 

None of us are prepared to be caregivers — the role is thrust upon us. More than 40 million Americans are caring for an elderly parent or loved one. Here are six tips to make the caregiving burden more sustainable:

1. Accept help, and don’t be afraid to ask for it.

People will ask you what they can do early in your parent’s illness, so strike while the iron is hot, says Katy Butler, author of The Art of Dying Well.

“Right after a crisis, friends and family rush in and say, ‘Is there anything I can do?’ ” Butler says. “And you’re often so overwhelmed you can’t even think. But strike while the iron is hot and take advantage of it.”

Ask for specific things like a meal or caregiving relief to allow you to take some time out.

2. Break down caregiving tasks into bite-sized solutions.

Figure out the tasks that sap your energy the most (is it bedtime? Dressing? Transportation?) then think about who you can get to help with those specific tasks. It’s a lower-cost solution than full-time care or institutionalization.

The National PACE Association can provide services that help support family members so the people they love can continue to live at home. PACE operates in 31 states; check to see if your state is one. Other options include Home Based Primary Care through the VA for eligible veterans, van services and Meals on Wheels.

3. Don’t tell your loved one what to do. Ask about the quality of life they want and how you can get them there.

Minimize conflict with your family members by identifying their goals rather than issuing them orders. That way, you can work together to achieve them.

Make a list of things your loved one really loves doing, whether it’s a weekly bridge game, listening to music or having tea with a friend. You can also find ways to help outsource these kinds of tasks, too.

“You’ve got to be thinking about what makes this person’s life worth living,” says Butler.

4. Be an empowered medical advocate for your loved one.

The inertia of aging and medical care will lead your loved one down a slope of more tests and procedures if you don’t keep track of the big picture. For many elderly parents, a good quality of life is much more valuable than more years spent suffering or tethered to medical appliances. A key caregiver job is asking how a proposed procedure will improve your loved one’s quality of life. If it won’t, then don’t.

5. Get your legal ducks in a row so you can focus on your relationship

As a caregiver, you’ll be called on for medical and financial decisions. The sooner you brave those difficult conversations for end-of-life care, the better you’ll be able to stick to your loved one’s game plan for the future.

Help your loved one create an advance directive (if they haven’t already), a documentation of a patient’s preferences regarding their care. According to surveys, only about a third of Americans have one. You can find inexpensive templates online at sites such as Five Wishes.

6. Make sure to take care of yourself, too — you are more than a caregiver.

Caregiver burnout is a real phenomenon. Taking on the role of caregiver often starts in crisis and becomes the new norm, which can alter your life forever. Make sure to take time out to care for yourself; getting away for a bit is good for you and your loved one.

Also, savor the little moments with your loved one. Your relationship roles may have changed, but you’re still family.

“Remember that you are more than just a caregiver,” Butler says. “You’re also that person’s son or daughter. If there are ways that they can still mother or father you, even in their decline, even with their disabilities, soak them up.”

What Every Cancer Caregiver Should Know, With Kaycee Carmichael

This podcast was originally published on WE Have Cancer Show by Lee Silverstein on May 21, 2019, here.

Kaycee and Jane Carmichael – WE Have Cancer

 

 

 

In 2016 Kaycee Carmichael’s mother was diagnosed with Colorectal Cancer. Though her mother died only four months after her diagnosis, Kaycee learned some valuable lessons about life as a cancer caregiver as well as dealing with grief.

We discussed:

  • Her Mother’s life as a teacher and the incredible impact she left on her students.
  • How her mom came to be diagnosed.
  • How she managed the challenges of a cancer caregiver and some helpful tips and advice for other caregivers.
  • How she deals with the grief from her mom’s passing.

Links Mentioned In The Show

Lotsa Helping Hands – https://lotsahelpinghands.com/

Connect with Kaycee on Facebook – https://www.facebook.com/kaycee.lang

Follow Kaycee on Instagram – https://instagram.com/kacellaneous

WE Have Cancer Links

Subscribe to the show – https://pod.link/wehavecancer

Follow WE Have Cancer on Social Media

Like our Facebook page – https://www.facebook.com/wehavecancershow/
Join our private Facebook group – https://www.facebook.com/groups/wehavecancershow/
Follow us on Twitter – https://twitter.com/wehavecancerpod
Follow us on Instagram – https://instagram.com/wehavecancerpod

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.”

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.

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