Talking with Our Children
This video was originally published on YouTube by The Cancer Support Community on May 26, 2015 here.
Tag Archive for: caregiver
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:
- Is being a caregiver for a loved one too much for me to handle while keeping my job and other responsibilities?
- Am I overly consumed with looking after a loved one that I no longer take time during the week for myself?
- Am I not eating well or finding time to exercise? This can take a toll on you both mentally and physically.
- 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.
Natasha is a firm believer in health and wellness for all ages. Having been a family caregiver for her grandmother, she knows what it’s like to go through family trials and tribulations. She is currently a blogger who wants to aid others in understanding the tips of healthy and safe aging that she has come across with her own personal experiences as well as through deep research on the topic.
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.
Rachel Martens is a mom of a child with a rare diagnosis. She’s one with many hats in the health world in policy development, research partnership, mentorship and science communication. She’s an aspiring runner, crochet fan and enthusiastic coffee drinker.
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
Real Stories of Pancreatic Cancer
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 cancer diagnosis is important. Connecting you to those who can relate and provide support is what we do.
Pancreatic Patient 1: Female (Canada)
This is my first entry. A friend directed me to a related site today, and somehow I ended up here. I was given the pancreatic cancer verdict the end of last year – after months of testing and being told ‘whatever it is, it isn’t cancer’. Ha! So much for the – it isn’t cancer theory. I was referred to a world class surgeon in Toronto early this year who was able to do a Whipple procedure, removing about a third of my pancreas.
Initially he thought he got it all. However subsequent scans revealed the original cancer had metastasized into the liver. So then it was off for chemo. What a nightmare. Again, an excellent oncologist at an excellent facility. I was put on the 5-FU regime (how appropriate is that name!) from May-Nov. Twelve treatments in total. Nearly killed me. I don’t think I have ever felt as ill as I did during the 2 weeks between treatments. Just began to feel normal when it was time to begin all over again. But, by the end of the year my tumors had reduced considerably, and my oncologist considered me his poster girl. We all knew the reality of pancreatic cancer.
However, by the end of February the party was over. The tumors were back. So another hit of 5-FU. This time the drug concoction plus the accompanying steroids, triggered bleeding abdominal ulcers. It was decided to discontinue 5-FU. I am now receiving Gemcitabine, a less aggressive treatment. I feel I’ve been given a reprieve chemo-wise, but only time will tell if this will work for me or not.
I would be very interested to hear from anyone with pancreatic cancer. I am blessed with a wonderfully supportive husband, family and friends. Life is good. But I hate this disease with a passion. Acceptance of it is not in my vocabulary.
Pancreatic Patient 2: Female (USA)
Just found this site and today is my first entry. I was diagnosed the end of June with inoperable pan can. I went through an experimental drug trial for Tnferade in the fall. It was absolutely brutal….and did nothing as far as we know. My tumor has remained basically “stable” since my diagnosis, with my current treatment of gemzar every other week. The gemzar really knocks me down for a few days, but being as I’m still “stable”, I guess it’s worth it. Early September of this year I spent two weeks in ICU, as all of my treatments/drugs created a 5cm duodenal ulcer……Had no idea I had it until it began to bleed profusely…..10 pints of blood later, I’m still here. Back to work now, but only three days a week. Absolutely dreading the winter, having lost 50lbs since this started I don’t have an ounce of fat for insulation!
Feeling so much better since the ulcer was taken care of! I believe it has been a undetected problem for quite some time, but how would you know….I mean was I having a lot of abdominal pain…yes….but I have pan can so how do you differentiate? Best of all I am sleeping better. Prior to the episode, I was usually only able to sleep two hours or so at time! Now my sleep is nearly “normal. I had plans to go to Vegas with my family in October for a family wedding….but of course was side lined by the hospitalization. Was able to rebook my husband’s ticket and mine for the first week of December and am excited at feeling well enough to have a good time…..and have some nice weather, if only for a weekend!!! Of all the compromises this illness has forced upon me, not being able to tolerate traveling much has really been one of the worst things since I got sick. Prior to getting sick I travelled the world extensively. I have plans to celebrate my 50th birthday this March in London…and soooooo hope I will still be well enough to do it!
Hello friends! Still here!!! Have gained back 25-30 lbs. and doing much better! Been off chemo for eight weeks now. The last round has damaged my nerves in my hands and feet. The doctors say they have exhausted all established tx options for me. This is not necessarily bad news, as the reason is more people in my shoes…don’t get this far. My last scan showed my liver mets are nearly imperceptible and the once very large head tumor itself shows a “residual”! They don’t have any idea what this means in the long run, and consider me a “lucky” anomaly. I am far from the person I was physically, before this started…but certainly grateful to still be here. I hope someone reads this post who has been recently diagnosed with inoperable pan can……I know that the odds are so very poor for most of us….but PLEASE believe there are cases like mine out there…..It isn’t always a 3-6 window. When I was diagnosed, I never expected to be here this long…26 months and counting. Not that I was being a defeatist or negative…..It’s just as a healthcare professional myself, I understood the grave reality of my situation. That said….we all MUST remember….ever case IS different and the best advice I can give is to always stay positive!!! Since I the first of the year I have begun to try to resume my life’s passion….regular travels. I have been to London twice, one in March to celebrate my 50th with friends from around the globe, and last month for a music symposium my husband was invited to attend. I plan on getting back to London in a month or two, and to Vegas in September!!! Anyways…thanks for reading…and stay positive!!! XOX
Pancreatic Patient 3: Female Caregiver of Male patient (USA)
Just little background… My husband, 54, was diagnosed with Stage IV Pancreatic Cancer last Sept. We went to have the Whipple procedure and found the cancer had spread to his abdominal cavity. He just completed his 10th round of Folfirinox. The treatment side effects have been continuing to get worse…. he sleeps most of the day and when he is awake he is in pain. His weight has gone from 220 to 150 in the last year and with his appetite gone it continues to go down. We have been holding on to the hope that once he completed 12 rounds of Folfirinox they would do another CT Scan and God willing the spots on his abdominal wall would be gone.
We thought he would then be a candidate for the Whipple. He has a tumor in the head and tail of his pancreas. Today we were told that wouldn’t be happening…. while I understand the reasoning (the lengthy recuperation period, the added weight loss and the overwhelming odds that the cancer would come back anyway) I am heartbroken. I had convinced myself that we were going to beat this. I never let myself think we couldn’t. I’m supposed to grow old with this man, our “golden” years…. we raised three beautiful children together, watched the oldest get married, watched them graduate and go their own ways…. it was supposed to be “our” turn. Our kids are 25, 26 & 30.
Today we had to tell them that time is limited. All I can hope for realistically is another wonderful five years… I really hope I get another 5 years.
