Statistics and the Harsh Realities of Caregiving

We recently read several interesting articles and research about caregiving. For any of our young adult readers who are actively involved in a caregiving role right now, we are cheering you on and personally understand how tough of a job you have. You are among an estimated 19 million young adult caregivers as of 2015 and have been identified as an under-served population, as we’ve reported before. Sometimes our stressful period of caregiving seems long ago, but we can be taken right back to that moment by reading about others’ experiences. And we are fortunate to even have the chance now to read and reflect, considering all of the young adults out there who are caring every day for a loved one - no time for reading, at least not anything longer than a pamphlet, no breaks, lots of To Do lists, sleepless nights. Hopefully with good friends, great snacks, plenty of cheese, and funny entertainment to accompany you. Click here if you need ideas for a good laugh. 

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When reading this article, we almost didn't even flinch: “New research from Transamerica Institute finds caregivers risking their health and finances to care for loved ones” was the tag line. We've heard that before and we know it is true. But wait, this should be shocking, right? Why isn’t this in the headline news?

Perhaps our experience has made us numb to these reports or immune to shock from these statistics, because we have experienced many of the negative effects that are discussed - not being fully prepared for our duties, taking time away from work, putting our own health aside. We’ve read about similar numbers and problems before. But when we put real faces to these issues, and think of young adult siblings, in particular, going through these struggles, we want more solutions. At the very least we want to send them a care package with triple creme cheese or our favorite humidifiers via Amazon Prime, and stealthily drop a basket of beer and brownies on their door step.

Are we becoming blase to this problem? If we just keep talking about the issues, it will become better, right? Facts like only half of caregivers felt properly trained to administer certain medications or perform nursing duties keep happening. We must do this better.

The amazing Feylyn Lewis, PhD researcher on young adult caregivers and guest blogger,  shared this research with us several months ago and it spoke to us. It makes the point that research doesn’t usually share or seek out the negative consequences. Yes, so true! We can’t always paint a rosy picture of caregiving. There are harsh realities, stress, and much hardship involved. This research reports the perceptions of children and young adults on their experiences of having a parent with dementia. The truth came out, in sometimes surprising and sad ways, but we give them tremendous credit for sharing their reality. Only through honesty can we understand better what it is like to be a caregiver, and it may be therapeutic for others if they share feelings in common with the research subjects. They discuss “taboo subjects” or those that aren’t considered socially acceptable, such as “I don’t like my ill parent”, the sense of “waiting for death” over an unknown amount of time, and the distressing behaviors of dementia. The researchers were criticized for their focus on the negative but, unfortunately, the experiences of the subjects were not positive. The researchers explained: “their stories of the impact of dementia on their lives have been negative. We consider not acknowledging these experiences would be unethical.”

We are very curious to hear about your experiences. What is the hardest toll for you, your family, or your career that caregiving has caused you to pay? Do the reports and statistics paint an accurate picture - too optimistic? Too bleak?

March 30, 2017 Caregiving and Grief News Roundup

In this Caregiving and Grief News Roundup, we share several touching personal stories we came across in the news recently that resonated with us, as well as a few positive stories from around the country.

First, this beautiful story in the Washington Post emphasizes the importance of simply being there with a loved one at the end of their life. We found ourselves nodding and tearing up reading, as Jennifer Palmieri writes: “Of all the moments in my life I had with my big sister, the ones with the most value, the most intimacy, the most joy, were the ones I spent simply holding her hand in her hospice room. No distractions, no expectations or pressures, a time to simply be present, to simply be sisters.”

This real and emotional story describes a cancer patient being disappointed in how she was treated as a person in the hospital. Sue Robbins makes what seems like a reasonable request: “Please treat me as well as you are treating my tumour."

Check out this short video from PBS News Hour's "Brief But Spectacular" series with one our favorites, Kelly Corrigan, best selling author and podcast host. She briefly talks of her own experience with breast cancer and learning that her dad was diagnosed with terminal cancer. We relate to her stating that she put her energy into writing.

Of course, one may expect to become a caregiver later in life, perhaps for elderly parents, but when caregiving comes in your 30s and 40s, it is unexpected and stressful. This NY Times article describes experiences from different “off time” caregivers who face the difficulties of juggling careers, child-rearing, and missing out on fun activities.

Daughters Unite shares the story of a “Millennial Caregiver”, Feylyn Lewis. They are a unique population in need of more awareness and support as their caregiving responsibilities affect their ability to attend college, become employed, and engage in peer relationships.

In a few other uplifting news stories from around the country:

  • In Ohio last week, the state legislature passed the Ohio Caregiving Act, which ensures hospital patients' designated family caregivers are offered instruction in providing needed care at home.
  • From Indianapolis comes a new app, Patch Health, designed to help multiple caregivers for a loved one coordinate care. Brilliant!
  • Earlier this month in Seattle, radio station KEXP teamed up with the Seattle Cancer Care Alliance Proton Therapy Center to present “Music Heals,” a day long program of stories and music with the power to lift our spirits and heal our souls in the face of cancer. We love this concept! We've featured music on our Resources page and stories from guests about the power of music to heal and a survivor’s playlist.

The Story of the Past Year

‘Tis the season once again - time to celebrate our Irish heritage! We are reminded of our St. Patrick’s Day post last year, when we launched this website. We shared one of our favorite quotes:

Death leaves a heartache no one can heal;

Love leaves a memory no one can steal.

- Irish Blessing

We are proud to announce that we are celebrating our 1 year anniversary of this website and blog! Although it has been a time consuming and sometimes difficult road, it has been incredibly rewarding. We are impressed with the real writers of the world who do this regularly and our respect for them has only grown. Just when we had moments of thinking that we couldn’t keep this up, a great idea would strike us in the middle of the night and we felt inspired again. We thank you for the support and as always, we thank our role model and big sister, Colleen, for constantly motivating us to work harder and to make an impact on the world just as she did.

Below is a recap of the year in images and quotes.

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"Our goal is vast - to help not just other young adult and sibling caregivers and grievers, but also to reach their family members, friends, and colleagues, as well as health care professionals, in order to increase awareness and understanding of their needs. We can all improve upon our ability and capacity to discuss death and dying, to prepare ourselves and others for it, and to support those that are going through it. Even though these are big goals and big topics, we think Colleen would agree that we should try to tackle them." - Our Motivation Behind Losing a Puzzle Piece
"In many ways, losing our sister helped us find more meaning in family and appreciating life - and isn’t that a big part of the holiday spirit?" - Simplify and Downsize: Surviving the Holidays Without the Same Cheer
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"#stoptalkingaboutyoursickcat #doyouwanttoaskaboutme #publiccryingismythingnow" - Sister Humor About Our Grief
Photo credit: Melissa Kroll Photography www.melissakrollphotography.com

Photo credit: Melissa Kroll Photography www.melissakrollphotography.com

"After Colleen died our house was transformed by what seemed to be a million bouquets, orchids and ferns, a rose bush and a new tree in the backyard: a physical manifestation of Colleen's reach. The places where we dwell define our dealings with death, almost as much as our intangible memories and feelings."- Maggie Gets It: A Place Like Home

We have learned a great deal, not just by examining our own feelings and searching for insight, but also from our fabulous guest bloggers. We heard a mother’s perspective on sibling caregivers, a patient talk about grief and how acceptance is the hardest stage, and various views on sibling loss from a Marine's family dealing with his sudden death and how music heals, from a sister accepting and reflecting on the whole sibling relationship, from a group of siblings who supported each other through loss, from a sibling dealing with an unexpected loss and realizing life will never be the same, and the lessons a sibling learned through death. We received advice on how to talk to children about serious illness, how to keep going through grief, how Colleen was essential in her friend’s life, and other topics such as ambiguous loss, survivorship, and architecture's role in caring for cancer patients. We are so grateful for their wisdom.

Check out some highlights of these guest posts through their beautiful images: (Click on the image to link back to the blog post.)

"[Colleen's sisters] were there no matter what. They knew her better than anyone. With them, she didn't have to put on a show. If she wasn't feeling good or didn't feel like talking, or even felt crabby, she could let her true feelings come out. This is what siblings provide in Caregiving." - A Mother's View of Sibling Caregivers

It has been quite a journey and we can't thank you enough for your support. What we have gained from this website and the many touching stories is difficult to put into words. Every day we are reminded of Colleen and the pain of having to go on with life without her does not go away, but this website has given us purpose and for that, we are thankful.

Caretakers and Patients: Coping with Mesothelioma as a Young Adult

We are happy to introduce our guest blogger, Nicole Godfrey, from Mesothelioma Guide. She draws our attention to a rare form of cancer, mesothelioma, helping us understand what it is, that young adults are affected, and the challenges of caring for a young patient. Nicole is a writer and a community outreach team member at Mesothelioma Guide. When she isn’t working, she enjoys reading graphic novels and writing fiction. She also is an avid theme park enthusiast.

Mesothelioma is a rare but serious type of cancer. It usually occurs in the lining around the lungs or abdomen. When a confirmed diagnosis occurs, life changes not only for the patient, but it changes for their friends and loved ones as well.

Young people can often go overlooked in the mesothelioma community because mesothelioma usually occurs in people over 60. However, young adults are still affected. Some young adults find themselves filling the role of caretaker for a family member with mesothelioma. Other young adults find themselves unexpectedly diagnosed with mesothelioma.

The Cause of Mesothelioma

Mesothelioma is caused by exposure to asbestos. Asbestos fibers can float in the air as dust. When they are breathed in or swallowed, they can damage cells and eventually cause tumors to form. Asbestos is a mineral that was used in many products because it is extremely durable and a good heat conductor.

Most people were exposed occupationally, such as factory workers, shipbuilders, military veterans or insulation manufacturers. Unknowingly, many family members of people with asbestos related jobs, were also exposed to asbestos through secondary exposure. Often workers came home and still had asbestos fibers and dust on their clothing. Family members could breathe in asbestos through contact with the worker’s clothes.

Unexpected Diagnosis

The only way a person can get mesothelioma is by being exposed to asbestos. Mesothelioma takes about 20 to 50 years to develop after exposure to asbestos. This latency period can cause diagnosis to come unexpectedly, especially for younger patients who were exposed to asbestos as children without knowing.

In the United States there are approximately 2,000 to 3,000 cases of mesothelioma diagnosed each year. When a person is diagnosed, it often takes both them and their loved ones by surprise.

Due to its rarity, many doctors don’t have experience with diagnosing and treating mesothelioma. Under many circumstances, patients are misdiagnosed. They can be diagnosed as having a cold, the flu, or pneumonia. Patients are even sometimes diagnosed as having other types of cancer.

Some common mesothelioma symptoms are

  • Chest pain
  • Difficulty breathing
  • Dry cough
  • Weight loss  

When a person is officially diagnosed, sometimes it is too late and their treatment options are limited. This gives many individuals less time to cope and understand what is happening, before they lose their loved one.

Being Diagnosed Young

The average age of someone being diagnosed with mesothelioma is over the age of 60. However, there are cases where someone can be diagnosed in their 20s or 30s.

Jodi Page and Alexis Kidd are two survivors who are featured on Mesothelioma Guide’s website. They both were diagnosed at an uncommonly young age.

Jodi was diagnosed with malignant pleural mesothelioma when she was only 26 years old. She was given 19 months to live. With her family caring for her, including her dad, aunt, and sister, she beat the odds and is now a 16-year survivor.  

Alexis was diagnosed with peritoneal mesothelioma when she was 37 years old. She was given 6 months to live. With her husband supporting her, she is now a 10-year survivor.

 

By seeking mesothelioma specialists, treatments, and having support and care from loved ones, many patients are beating the odds of their original prognosis.

Having Support

A recent study revealed that the average age for a caregiver is 49.2 years old. However, 48% of caregivers in the United States are between the ages of 18 and 49.

A mesothelioma caregiver might feel like they are overwhelmed with many new responsibilities, such as feeding and bathing their loved one. They also may struggle with becoming their loved one’s healthcare or financial advocate.

In times of uncertainty patients need a strong support system. Mesothelioma caregivers also need support to get them through times where they feel like their world is being turned upside down.

It is always important for both mesothelioma patients and caregivers to know that they are not alone. There are mesothelioma support groups that both patients and their loved ones can get involved in. These groups can be found in their local community, online, or even by phone.

If you or someone close to you has been diagnosed with mesothelioma, you may find yourself having a lot of questions. For help seeking your answers, you can always contact Mesothelioma Guide.

Resources:

https://www.mesotheliomaguide.com/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1449485/

http://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf

https://www.caregiver.org/caregiver-statistics-demographics

http://www.cancer.org/cancer/cancercauses/othercarcinogens/intheworkplace/asbestos

 

Ambiguous Loss: When the Loss Doesn't End

We are excited to share a guest post from Feylyn Lewis, an American PhD student at the University of Birmingham in England who is focusing her research on young adult caregivers in the United Kingdom and United States. She personally had the experience of helping to care for her mother while juggling college life, and her brother was the primary "millennial caregiver," an experience that opened her eyes to the challenges of the young adult caregiver population. She has recently been published in the Huffington Post and the Caregiver Space and we are honored to share more of her writing here.

Ambiguous loss, as coined by Dr. Pauline Boss, refers to the loss a person experiences when there is a lack of resolution or clarity. Originally, Dr. Boss posited the theory of ambiguous loss through studying the families of soldiers missing in combat. There are two types of ambiguous loss. The first refers to when a person is physically present but psychologically absent, as with those with Alzheimer’s Disease or dementia, certain mental illnesses, or substance abuse issues. The second type occurs when an individual is psychologically present in the minds of the family but is physically absent, e.g. a missing person.  The experience of ambiguous loss may be linked to other ill health effects such as depression, anxiety, guilt, substance abuse, and self-harming behaviors. Young adult caregivers are particularly likely to experience the former kind of loss, dependent upon the health condition of the person they care for.

Ambiguous loss differs from the experience of death because the loved one is still present. There is a lack of finality that typically occurs in death, as a caregiver experiences a loss that is gradual.  Our society generally does not give ambiguous loss the same weight as death because the person is still living, referring to what research has called “disenfranchised grief”. However, ambiguous loss is significant and detrimental.  Caregivers are forced to continuously grieve the loss of the person they once knew and loved while also providing care for them.

Young adult caregivers, likely because they are providing care earlier in life than they might have expected, experience a complex ambiguous loss: they grieve both the loss of the person they loved, and also the loss of their identity in relation to the loved one. Every time a young adult performs a caregiving act, be it reminding their loved one to take their medication, or paying the household bills because the loved one no longer has the mental capacity to do so, they are reminded that the person they knew is gone. Other research has found that caregivers may be preoccupied with how their loved one used to be, and when considering the present, they may determine that their loved one is “another person”.

Furthermore, their roles become more than sibling, child, or grandchild, but expand to include “caregiver”. For many young adult caregivers, this may mean a transformative shift in their perception of their identity within the family. In my research with young adult caregivers, I often find that they are forced to come to terms with a loss of their “normal” interactions with their loved one. Many say that they feel like the “parent”, instead of the “child”. In the midst of navigating the complicated life choices of young adulthood (relationships, education, careers), they feel like they must “figure life out” on their own.

Young adult caregivers are also in the unique position of grieving the loss of their future plans with their loved one. Suzanne[1], a 26 year old young adult who provides care for her mother with early-onset Alzheimer’s, was particularly troubled by the thoughts of her future wedding: “a traditional part [of a wedding] is your mom. And she’s not gonna be here. She’s not gonna mentally be here, even if she’s physically here.” Suzanne had to grapple with altered expectations for her mother’s role in future life events, while also continuing to perform the social norms for her age group− attending her friends’ weddings. Faced with the desire to express happiness for her friends while simultaneously feeling deep sadness over her loss, Suzanne became emotionally overwhelmed and found herself hating weddings, a life event she once greatly looked forward to. Other young adult caregivers find themselves in similar positions: graduations, the birth of children, and other major life events must be anticipated knowing their loved one may not be “present” to share in the moment.

Young adult caregivers experiencing ambiguous loss should take their feelings seriously and consider seeking professional mental health support. A counselor or psychologist can assess the caregiver for their level of grief and their capacity for resilience. Therapy can help a caregiver find meaning, live with uncertainty, and redefine relationships and identities. Discovering hope through new life plans and dreams can strengthen a young adult caregiver’s ability to face the future.

[1] Names have been changed.