Category: Caregiver Stories
It cannot be emphasized enough how important a role family caregivers can play in helping others maintain their optimum health.
Being diagnosed with Malignant Mesothelioma, a rare serious cancer affects the patient as well as the family and their loved ones. As with most diseases, often there is one person that ends up being the primary caretaker. This role is often one that the person did not plan on or is prepared for. The people that are affected by this disease can be anyone. The caregiver can be a family member, a son, a daughter, a husband, a wife, a friend, a neighbor, a relative, or anyone that steps into this vital role.
There are different types of caregivers, the most common ones are someone who takes care of a family member without pay. The other types are professional, independent, private, informal, and volunteer caregivers.
Every November we recognize all the people that are filling that role with National Family Caregivers Month. In the United States, there are over 65 million Americans who care for their aging or disabled loved ones. Of this number, 90% are unpaid care providers.
One in four people at some time in their lives are caregivers to family, friends, or neighbors who have either physical or mental conditions. Of this number, nearly a third are helping someone with mental illness.Those are just the statistics. The statistics do not tell the everyday life of the caregiver. They take care of people in need every day. Often the price the caregiver pays is their own health, mental and physical, and social wellbeings. It has been well documented that often the caregivers’ health suffers due to this role.
To put a face to these statistics, look around you. A few years ago while seeing a mesothelioma patient return to the clinic with his wife, I was struck by the toll that the disease had taken on his wife. The patient looked great, he was doing well and had a positive outlook. His wife, his primary caretaker, was not doing as well. She had lost weight, looked tired, and reported feeling depressed. Being the caretaker had taken a very visible toll on her.
Chances are you know someone, work with someone, or you are someone taking care of another person. Reach out to the caretaker, lend a hand, be specific, and ask if you can help at a specific hour on a specific day. If you can’t physically help, listen to the caretaker. Schedule a time to talk to them regularly. The role they play is a demanding and rewarding one that we can make easier by supporting them. Make their journey less isolating in November and throughout the year.
There are resources available for support for caregivers;
www.hhs.gov Resources for Caregivers
www.Caregiving.org The National Alliance for Caregiving
www.Caregivers.org Caregiving at Home a Guide to Community Resources
www.AARP.org Resources for Caregivers and their Families
November is recognized as National Family Caregivers Month. First recognized in November 2013, by President Obama, the purpose of this month is to raise awareness for family caregivers and to improve their overall lives and well being.
Over the course of life, chances are that we all will be caregivers at some point for a parent, sibling, loved one, partner, neighbor, or friend. It is not something that we plan on or prepare for, it usually just happens.
Family caregivers come in all ages, sexes, shapes. They are as varied as all of us. Each one does what works for their particular circumstance. They provide care for loved ones, friends, and partners across the whole spectrum of caregiving. They take physical care, psychological care, and coordinate care for someone else. They do tasks like taking someone to the grocery store, to doctors appointments, or simply spending time with them.
If there is an “average” age of caregivers it is 47-54 – employed women. Providing care to the elderly, the average age of the caregiver is 62. And minority caregivers provide more care than their white counterparts. The length of time in the caregiving role can be less than a year to more than 40 years. Family caregivers are unpaid, and often unrecognized.
This is a very stressful job that can impact the caregivers’ health. Although there are definite positive benefits of caregiving, for the caregiver there also can be negative implications.
Since the pandemic it seems more important than ever that we take care of each other. All of us have seen what isolation can do to our collective mental health. For many family caregivers that is their reality for long stretches of time.
Shining a light on a problem or situation is important. More important is how can we help? Look around, you probably know someone who is providing care for someone else. Help them accept help. A phone call, a visit acknowledging what they are doing, staying with the person while they go for a walk, small things can mean so much.
Caregivers are giving to others, and you can help by giving to them. Accepting help is difficult for some people but it can provide relief for the caregiver who is already giving so much!
October was Health Literacy Month and November is National Family Caregivers Month. Both of these special months highlight the importance of education, support, and understanding when dealing with or caring for a loved one. When faced with a diagnosis of malignant mesothelioma, understanding of the disease and what to look for helps both the patient and the caregiver.
The definition of health literacy from the Affordable Care Act of 2010 is “the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make health decisions.”
There is nothing simple about understanding the disease of malignant mesothelioma. From diagnosis through treatment the terminology and descriptions of the disease are difficult to understand and to even pronounce. The process of being diagnosed is usually after weeks or months of tests and scans, and after other common illnesses are ruled out. Health literacy can become an issue immediately.
A “family caregiver” is considered anyone who does not get paid but helps another person do what they can no longer do without assistance. Family caregivers provide extensive assistance which can include medications, shopping, preparing meals, cleaning, advocating, coordinating, educating – the list is very long, and the contributions vital.
For a rare serious disease like malignant mesothelioma, it is important for patients and families to understand what they are dealing with. The options for treatment can be confusing and the plan can change with further testing. The importance of being able to understand and trust your team is vital. Family caregivers are the link between the patient and their medical team. Having someone with you during this journey can be life saving. In order to give the patient the best possible chance for recovery and quality time, the family caregiver’s contribution and understanding of the disease and the patient is very important and often both overlooked and under appreciated.
Looking around, the number of people who in addition to maintaining their jobs and lives also provide care for someone else is staggering. The term “invisible army” has been given to these caregivers who often are not recognized.
We honor and thank all the family caregivers for their huge contribution to ongoing care for another person, family or not!
My family and I have been riding the so-called “mesothelioma roller-coaster” for over six years now. The ups and downs of this disease are never-ending and, even though my father has since passed away, they continue.
When my Dad was diagnosed, it was instant confusion followed by anger mixed with sadness, anxiety, and grief. Upon completion of surgery and chemotherapy, it was relief and happiness. I remember telling my husband after Dad got a report from the doctor that there was no evidence of disease, that I had thought that I would never be able to truly smile again. During the clinical trial, the good reports kept coming, and we shared so many happy memories in that time that I will always treasure.
When the news came that some mesothelioma had returned, it was back to square one, but in a different way this time. Now, we were educated, and it seemed like the sense of shock of what we were dealing with was muffled a bit. We knew what mesothelioma was this time, the prognosis, the implications of treatment, and so did our close friends and family members. After the radiation that followed, Dad was once again showing no evidence of disease. We thought that once he recovered from the effects of the treatment, he would be back to his old self again, just like before.
That was until the morning that he passed away. Less than an hour before he was gone, I spoke to my father who told me that he was feeling better and better. He told a friend he thought that he was turning a corner toward complete recovery. Ultimately, this was not to be. I don’t need to document the gamut of emotions that I felt that day, but I think it is important to realize that my emotions are still all over the place. The roller coaster ride continues.
Every day, I feel sadness and grief at the loss of the man who shaped me, but gratitude for his presence in my life. I feel joy and warmth thinking back on the memories we made while, at the same time, mourning those we didn’t get a chance to create. I laugh remembering his smile and sense of humor, while shedding tears in knowing that I don’t get to hear it anymore. The aftermath of mesothelioma is something that I will carry with me forever, but I will always keep on loving my father and remembering his beautiful life.
For many different reasons, sometimes it’s hard to ask for help. You don’t know who to ask, you don’t want to impose, you’re embarrassed, or you don’t want to admit that you need the assistance. These can ring true for anyone, but I’ve found it to be quite prevalent in the mesothelioma community.
This group is made up of warriors! It’s a group of strong, resilient, and let’s face it… sometimes stubborn (and that’s not a bad thing!) people who are steadfast in their fight. They don’t want to make others feel as though they are putting them out, or be what they think is a burden on their loved ones. I am here to tell you, that no caregiver feels that way.
We are caregivers because we care and want to give anything we can to those we love. We are honored to support you in any way that you need. I know that there were times where my father hated asking me for things; I’m an adult, I lived three hours away, and I had “my own life.” Just because I am married with a business and a family doesn’t mean that he wasn’t still very much a part of that life. Things were added, but in no way was he subtracted.
I was so blessed to be there for my Dad during his surgery and recovery. I was able to be there to help during the clinical trial and visit multiple times during his radiation therapy when he was in NYC for weeks. I am blessed to have a life that allowed me to travel to be with my parents and make frequent trips back to my hometown. Dad also visited me at my home, and my husband and I loved doting on him, making him the king of the castle!
So, as Dad would say, “the moral of the story” is to never be afraid to ask your loved ones for help. Don’t push them away when all they want is to be pulled closer. You are loved by many, and those people are just waiting for a chance to help. God bless all caregivers and the ones they care for… in any capacity!
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