Helping Caregivers Take Care of Themselves with Respite Care

Much has been written about the stress of caregiving and the toll it takes on those who do it.  According to a 2018 study from insurance firm Genworth, 40% of caregivers “experienced depression, mood swings and resentment as a result of their labors.”  

Respite care services can offer much-needed relief for this population of caregivers who are struggling, yet a very small portion uses them. What are some ways that more caregivers can take advantage of these helpful services?

Stress of Caregiving

The stress and negative emotions that can build up from caregiving have a negative impact on the caregiver, their family, and even the one receiving care. One of the most tangible signs is the impact on the caregiver’s immune system. Research cited by the American Psychological Association found that among caregivers age 55 to 75, there was  “a 15 percent lower level of immune response, making them more vulnerable to the flu and other infections.” That means caregivers are more likely to get sick themselves, which renders them even less effective in their caring for the person they love.

The feelings of resentment and guilt also weigh heavily on caregivers, especially those who were doing it alone because other family refused to assist. A qualitative study from the NIH reported that:

“While these caregivers made clear their strong desire to continue to help the care recipient, the strain of caregiving often left them with a range of negative emotions. Many reported feelings of guilt for wanting relief from their caregiving duties and several described the circumstances around the initiation of their caregiving role. In many cases, the role was relegated to them by other family members, as it had been taken for granted that they would be best in the role due to their proximity or relationship with the care recipient.”

Many caregivers desire some relief and some help, yet, only 14% of caregivers take advantage of respite care. Respite care is short-term help either with caregiving duties for the care recipient or other responsibilities a caregiver has (such as household chores).  There are a variety of respite care services, including Adult Day Care Center and in-home care service providers

The benefits of respite care are clear. For anyone who is tending to a loved one, it’s an always-on role. Even if the caregiver doesn’t live with the care recipient, he or she is on-call at all times.

So why don’t more caregivers take advantage of respite services?

Barriers to Respite Care

At first, it might seem that financial reasons play a big part. For some families, that is the case. Overall, the decreased health that comes along with aging becomes expensive (more medications, more doctor visits, etc.), so what funds are left in retirement have to be distributed even more thinly.

While many states provide Waiver Services Vouchers, the funding for those often runs out quickly. There are other government assistance programs, such as the VA Aid & Attendance Benefit, as well as long-term care insurance, that can help with the costs of services. However, most families have to do some financial juggling to make the numbers work.

Aside from financial reasons, another factor is lack of awareness. The NIH study found that many of the families participating only found out about respite care by chance. 

In addition to these more visible reasons for the underutilization of respite care, there are several emotional factors at play. These components are harder to identify and can be even harder to overcome.

An article from the Caregiver Action Network explained four major fears that caregivers often have against respite care:

  1. The stand-in caregiver won’t do a good job, therefore the care recipient would suffer a little.
  2. The stand-in caregiver would do a great job, causing the family caregiver to feel incompetent or not needed
  3. The family caregiver doesn’t quite know what to do with his or herself when they are not caregiving, because caregiving has become his or her identity.
  4. The family caregiver feels guilt simply because they believe they are not living up to their obligation to take care of their loved one, even for the short time that a stand-in caregiver assists.

Another article cites one more emotional objection:

  1. The caregiver worries about what would happen if there was an emergency while they were aware, and they don’t want that guilt.

These are very deep-rooted psychological fears that are challenging to address with logic alone. For example, one of the most common arguments for utilizing respite care is that by the caregiver taking better care of his or herself, they will be better able to care for their loved one. While that makes a lot of logical sense, it doesn’t address the problem of the caregiver feeling totally lost about what to do even if they had time to themselves. 

Helping Caregivers Care for Themselves

To help more caregivers receive the benefits of respite care services, it starts with listening. Simply listening to a caregiver express his or her feelings can provide relief for them. One participant in the NIH study expressed how all she wanted from her counselor was to listen.

For some people, it can be challenging to hear someone express frustration or anger. Often this leads to friends and family pulling away, and thus caregivers to feel isolated, which itself is an issue. It also contributes to the pent up emotions because they don’t have an outlet. Spending time with and listening to someone who is under the stress of caregiving can be a respite service in itself.

Listening can also lead to helping them work through their objections to using respite care. By hearing what they worry about (Is it the possibility of an emergency? Is it the guilt of not living up to a duty?), a trusted friend or family member can help the caregiver reach a decision point. This brings them one step closer to getting help.

Another strategy would be for more physicians to alert caregivers about respite services. This could come from the doctor of the care recipients (who would be well aware of the level of their patient’s needs) or also from a primary care physician of the caregiver. When a caregiver informs his or her doctor about their caregiving responsibilities, it can open the door to more discussions about their own health and how to better care for themselves.

As more and more people become caregivers, respite care will become more crucial. Without the needed relief and time off from caregiving duties, this generation of caregivers will continue to decline in their own health, which could in turn create another generation of people needing caregivers!

If you know someone who is caring for an ill or aging relative, reach out to them. Take some time to listen. Offer some specific help, and let them know that there are services out there to help them.
River Oaks Home Care provides respite services in Bucks, Montgomery, Philadelphia, and Delaware Counties. You can learn more about these respite services here or give us a call at 267-755-7500

References:

1 Guengerich, Terri. State Caregiver Profiles 2017–2020.

https://www.aarp.org/research/topics/care/info-2018/state-caregiver-profiles.html

2 Fifield, Kathleen. The Trickle-Down Effect of Caregiving on Women.

https://www.aarp.org/caregiving/basics/info-2018/women-caregiving-trickle-down-effect.html

3 Caregiver Burnout: Steps for Coping With Stress.

https://www.aarp.org/caregiving/life-balance/info-2019/caregiver-stress-burnout.html

4ibid.
5National Institute of Health. The Impact of Respite Programming on Caregiver Resilience in Dementia Care: A Qualitative Examination of Family Caregiver Perspectives. ​https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5808833/

6 The Impact of Respite Programming on Caregiver Resilience in Dementia Care: A Qualitative Examination of Family Caregiver Perspectives. ​https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5808833/
7 ibid.
8RESPITE: Time Out for Caregivers: Fears That Paralyze. ​https://caregiveraction.org/respite-time-out-caregivers-part-1

9 Time Off for Family Caregivers Can Be Invaluable. ​https://www.aarp.org/caregiving/home-care/info-2019/respite-care.html 10 ​The Impact of Respite Programming on Caregiver Resilience in Dementia Care: A Qualitative Examination of Family Caregiver Perspectives. ​https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5808833/
11 ibid.

12 Caregiver Burnout: Steps for Coping With Stress.

https://www.aarp.org/caregiving/life-balance/info-2019/caregiver-stress-burnout.html

Tips for managing caregiving responsibilities among siblings.

Tips for managing caregiving responsibilities among siblings

Caring for aging parents or relatives is no easy responsibility. It can be one of the most challenging roles you play. If you are an only child or relative to a senior and helping them manage care, it can be a heavy burden to bear alone. However, when there are multiple siblings or family members who play a part in care management, the waters can be even trickier to navigate.

Here are three tips for overseeing the care of your aging senior along with siblings or family members.

1) Start early

Benjamin Franklin said it best, “An ounce of prevention is worth a pound of cure.”

If you can start discussions with your siblings even before Mom and Dad need a lot of (or any) care, you’ll start off on the right foot. You’ll likely head off many future arguments. 

In many families, when parents start requiring care, the adult children will either fall into their own assumptions about roles of caregiving (for example, the daughter does the caretaking, while the son covers it financially) or play into the “type” they were in childhood (for example, Sarah was the “responsible” child so she takes on care, while Claire was the “spontaneous” one and can’t handle helping at all.)

The problem with this is that it doesn’t take into consideration the current situation, strengths, or abilities of each person. Even if Sarah was the “responsible” one as a child, perhaps now she has a child of her own with disabilities who requires a lot of care.

Even if you can start the conversation of “What do you think taking care of Mom and Dad would look like for us?” that will set you up for future discussions. When the time comes for a serious plan to be put in place, you should arrange a family meeting with all those who would be involved (siblings, close friends, other relatives). 

When examining the situation and deciding solutions, be as specific as possible. Write down all the responsibilities and requirements of caregiving. When you’re deciding who should do what, be sure to take into account your own strengths, abilities, and limitations.

Another topic to review early on is any legal documents or decisions your parents have already made, such as a living will (also known as a healthcare direction) or power of attorney, and whether or not a will has been completed. It’s also important to know the location of these documents.

The key to everything is communication. One meeting or conversation is not enough. It’s an on-going process.

2) Develop your self-awareness

When it comes to caregiving, especially when it’s your own parents, there are a lot of emotions involved. Adjusting to the role reversal is difficult for most adult children, then added on are the everyday stresses of “normal life”, too. So, you’ll be experiencing a range of emotions, and then have to work together with other people, who you may be very close with or not so much. This situation is a stimulus for arguments.

Without being aware of and understanding your own emotions, you will simply react according to what your feelings tell you. This leads to acting out, yelling, blaming, and possibly even disengagement. None of these are productive for helping your loved one get the care they need.

Ask yourself questions about why you feel a certain way and what else might be causing it. Perhaps some old sibling rivalries are coming out again. Some clues that you might be acting out of feelings or fighting old battles include using phrases such as “You always do this!” or criticizing the way a sibling feels, such as “You donʼt care anything about Mom.” 
In these moments, in order to be able to switch to a more productive discussion, you have to be able to identify, pause, and adjust your mind and words. It’s a simple reminder, but try to pause and breath before you say the next thing. Then refocus back on the question or goal at hand.

If you find yourself really struggling, such as every discussion with your siblings turns into a heated argument, you might want to consider professional help. Even if your family doesn’t want to go to therapy together, going alone for yourself can be tremendously constructive. There is no shame in asking for help. When you are better able to manage yourself, your parents will win as well.

3) Discuss with your family how you will address problems

For someone who is conscientious and self-aware, it might come as a surprise to learn that not everyone is proactive about fixing or improving relationships. For example, many people just assume, “That’s just the way Sally is.” or “This is just how we interact.” It may never occur to them that if two people don’t get along they can take steps to improve their interactions.

As you get started on this caregiving journey, it could be helpful to ask your siblings, “If a problem arises among us, how should we resolve it?” You could also approach it as, “What would be the best way for me to discuss a problem with you?” showing that your primary concern is their feelings.

If you feel like you don’t make progress with that strategy, you could simply demonstrate it by saying, “If at any point you feel frustrated or hurt by something that I’ve done, please let me know so that I can correct it or not do it again.”

Another consideration is how each family member will alert the others about problems and how solutions will be made. For example, if you’re at an appointment with your Dad, and the doctor notices a decline and wants to adjust medication or treatment, how will you communicate it to your siblings? How will a decision be made? If you have established the process (for example, first you alert the others by sending an email to everyone providing the basic information, and then a family call or meeting is scheduled), there will be no surprises. No one will be left out. Furthermore, when people know what to look for, they’ll be less likely to miss important communications.

As humans, we’re bound to have disagreements, and in caregiving, there will almost definitely be problems. By addressing the situation early on, being aware of your emotions, and developing a process for resolving issues, you and your siblings will be better able to keep your focus on your parents and helping them to be as healthy and happy as possible.

If you have a senior living alone or far away, it’s likely that you feel concerned about their safety. Even with the diligence of several siblings taking care of mom and dad, it’s important to help reduce risks and increase safety in their living space. You can use our Senior At-Home Safety Checklist, which is a free comprehensive home safety checklist that will help you systematically go through each area of the home to check for common hazards and make sure the proper safety measures are in place. 
If you think your parents or relative would benefit from non-medical in-home care, you can learn more about our services here.

——————————————————————————————————————-

1Russo, Francine. (2011). Caregiving with Your Siblings: As a Family, Carefully Consider—or Reconsider—the Caregiving Responsibilities. Family Caregiver Alliance. https://www.agingcare.com/articles/sibling-relationships-resolving-issues-while-caring-for-parents-2 03842.htm 

2 Family Caregiver Alliance. (2003). Holding a Family Meeting. https://www.caregiver.org/holding-family-meeting
3 National Institute on Aging. (May 09, 2017). How to Share Caregiving Responsibilities with Family Members.h ttps://www.nia.nih.gov/health/how-share-caregiving-responsibilities-family-members
 

4 Samuels, Claire. (April 25, 2020). How to Stop Family Disputes Over Elderly Parents: End-of-life care and inheritance conflicts emerge https://www.aplaceformom.com/caregiver-resources/articles/family-disputes
5 Bradley Bursack, Carol. (2016). Sibling Relationships: Resolving Issues While Caring for Parents: The Powerful Emotions Involved in Caregiving. https://www.agingcare.com/articles/sibling-relationships-resolving-issues-while-caring-for-parents-2 03842.htm
 

6 Russo, Francine. (2011). Caregiving with Your Siblings: Clues That You Are Acting out of Emotional Needs or Fighting Old Battles . https://www.agingcare.com/articles/sibling-relationships-resolving-issues-while-caring-for-parents-2 03842.htm 

7 ibid

Helping your senior loved one use technology

Have you ever sat in the cockpit of a plane? Or perhaps you can picture a movie scene of a pilot sitting in the chair, flicking on switches, turning knobs, preparing for take-off.

As an outsider, someone who isn’t a pilot, your reaction to looking at the dashboard of a plane is probably something of overwhelm. What do all those buttons, knobs, lights, and screens even mean? How can anyone make sense of this?!

If you ever were sat down in front of this dashboard and told to operate it, you probably wouldn’t even know where to begin.

Well, for many seniors, this is the experience of using a computer or tablet or smartphone. 

Technology is a wonderful tool. This year has shown us the amazing ways that the internet and all these gadgets can not only keep us connected but also keep us working and learning.

However, many seniors haven’t taken advantage of these benefits of technology because the learning curve is so steep. What is disheartening about this is that right now seniors are the population most in need of new ways to stay in touch with friends and family.

The outlook doesn’t have to be so bleak, however, because it is possible for seniors to learn how to use technology and thus stay in touch with the people who love them. 

If you have a senior in your life who lives alone or lives further away or who simply doesn’t want to go out or have visitors right now, here are tips for teaching them how to use technology.

  1. Keep it simple. 

While you may enjoy replying to emails, setting your fantasy lineup for the week, checking the weather, and crushing candy to pass time all on your phone, your senior loved one probably doesn’t need to do all those things. 

When you are selecting a device for them, keep it simple. It’s better to go with a device that does a core set of functionality well and is reliable over one that can do everything but is more complicated. The main things that a senior might want to do with a device are make video calls, receive pictures, listen to music, and play basic games. Making and receiving video calls is probably the most important, so focus on that and find a device that can use a software that is very straightforward.

  1. Don’t assume anything.

The number one mistake people make when teaching a senior to use technology is that they assume a base level of technical knowledge. For people who have used computers for years, or even their whole life, they forget that it’s not just “second nature”, it’s something they learned.

Even something as “basic” as how to use a mouse might need to be explained. Some other commonly mistaken “second nature” understandings about devices are:

  • Overlapping windows. When a new screen appears, it’s not always understood that other screens are below it.
  • Nested menus. The fact that there are more options listed under the word “File” might have to be explained.
  • Power off versus sleep mode. This is important if you want your senior to be able to receive calls, which means the device has to be on. Many seniors will assume they need to turn it all the way off to preserve battery life.
  • Storage. Be sure to explain how they can access and use different things on the device, such as pictures or word documents.

The key is to ask if they are understanding and to keep things in everyday terms. Analogies will be very helpful in explaining these new concepts.

  1. Be mindful of physical differences.

The thing about aging is that it affects both the mind and body. Many seniors struggle with using their fingers due to arthritis or other diseases. A touchscreen device may not be best because maybe their hand shakes or they don’t have enough strength to hold up their arm. A more traditional computer with a mouse might be better. 

Hearing is another area to consider. If they use hearing aids, be mindful of the levels and frequencies of sound coming from the device. Ask the senior if it sounds okay for them.

  1. Have patience.

Above all, it’s important to have patience. It might be frustrating to have to explain something multiple times and on multiple occasions. If you feel yourself getting agitated, just remember the plane’s dashboard and consider how long it would take you to understand that.

You are probably busy and have errands to run or work to do, but just remember the benefits of what you’re enabling them to do. You’re giving them access to a whole new world. Loneliness is not just an emotional concern, but it can also lead to other significant health issues in seniors. By empowering them to use technology, you are enriching their life and increasing their overall well-being.

If you have a senior living alone or far away, it’s likely that you feel concerned about their safety. To help reduce risks and increase safety in their living space, you can also use our Senior At-Home Safety Checklist. Our free comprehensive home safety checklist will help you systematically go through each area of the home to check for common hazards and make sure the proper safety measures are in place. 

Download this checklist once and use it over again periodically to make sure your loved one’s home stays as safe as possible.

Elder Abuse and Neglect.

Elder abuse and neglect is very common in our society and around us, unfortunately due to the fact that little or no awareness is made about it to the public and our society in general, it makes it tough for us to see even when it’s happening close to home and around us. It shouldn’t be a surprise to us that most of this abuse and neglect occur within the family on a larger scale.

An abuse is the intentional cause of any physical injury inflicted on the consumer. Also, it is the unnecessary isolation or confinement of anyone as a punishment. Abuse can also be in the form of intimidation and also neglect.

Neglect is the failure to provide individuals with the most basic needs such as : Food , Water and Cleanliness. Neglect can also be when a caregiver fails to provide care and also to  keep the consumer from  physical and emotional harm.

Financial Abuse is another form of abuse that occurs with our seniors and this happens with the misappropriation of their properties, stealing their saved up money or cajoling them to sign documents and papers to favor them. Other kinds of abuse perpetrated to Seniors include: Verbal Abuse, Emotional Abuse and sexual abuse.

If you happen to live close by any senior, be on the alert to see if you suspect that there’s any form of abuse, depression or fear.You can also report any suspicious incident to the nearest county’s Aging and Adult services representative.

Keeping Seniors Warm this Winter.

❄️ Colder temperatures can be dangerous for seniors. Always keep indoor temperatures warm and if going outside, dress in layers and cover all exposed skin in very cold temperatures.

When venturing outside make sure you are outfitted with warm socks, gloves, a heavy coat, a hat and a scary. 🧣 A scarf does double duty–it will keep you warm but can also be used to cover your mouth and protect your lungs.

5 Must-Have Talks with Parents This Holiday.

Starting a conversation with an aging parent around long term care can be difficult. If you find yourself not knowing how to broach the subject with your parent, check out these tips to learn how to discuss things in a way that is sensitive and effective – at any time of the year.

https://www.aplaceformom.com/blog/12-10-15-must-have-talks-with-parents-this-holiday/

A visit home for the holidays is an ideal time to connect with parents and family members you don’t see every day. It’s a time-honored opportunity to catch up, share old memories and create new ones. But sometimes these holiday gatherings can also be a time when you notice an elderly loved one is struggling.

Dad and Mom may be moving slower, forgetting things or showing signs they can’t take care of their home. Sometimes the signs of a struggling elderly person are more subtle. For instance, you may notice an overgrown lawn, a messy kitchen or a disheveled appearance. Adult children are sometimes afraid to confront these changes.
Will Mom or Dad be insulted that you think they can’t take care of themselves? Will “the talk” become an argument that ruins the holidays? These fears can make it easier to just avoid the topic altogether. But failing to discuss and plan for things like cognitive decline, physical ailments and other realities of aging can lengthen the time your parent suffers.

Fortunately, you don’t have to approach the tough conversations about aging with fear. In fact, you may find that it is easier than expected. But you can’t find out until you get started. Keep reading for tips to help adult children discuss things in a way that is sensitive and effective. We cover topics from retirement finances to end-of-life wishes.

Credit: “A Place for Mom”

How To Choose The Right Homecare Service

If you or a loved one can no longer care for themselves, you have the option of either sending them to live-in a care facility or allowing them to stay in their home by hiring a homecare service to help them.

Homecare is the preference of many people because it allows them to remain in a familiar place and keep their home and belongings. It also gives them a better sense of freedom and more happiness. If you are ready to hire a home care company for yourself or a loved one, consider these tips to help you choose the right one. Read more

Veterans Aid & Attendance Benefit

What is VA Aid and Attendance Benefit?

The VA Aid and attendance is a tax-free benefit distributed to eligible honorably discharged veterans or their surviving spouses. It’s the highest level of Veterans Administrations Improved Pension Program. Those approved will receive monthly benefit that must be used as a reimbursement for the cost of acceptable medical expenses from the Veterans Administration (VA). This aid or assistance can be provided at home, in an assisted living facility, or a nursing home. Home care services are an acceptable medical expense.

Many veterans use this supplemental pension to help pay for supportive home care, medications, Assisted Living, etc. 

This most important benefit is overlooked by many families with Veterans or surviving spouses who need additional cash flow to help care for ailing parents and loved ones. There is over $1B each year unclaimed by people who could qualify but never applied.

Wartime veterans or surviving spouses of veterans may be eligible for up to $2,100 per month via the Veterans Affairs (VA) Pension With Aid & Attendance Benefit – that can pay for a personal assistant to come into their home part-time.

Challenges To Getting The Benefit

Most people simply don’t know the benefit exists! Our goal is to educate our local community about the benefit so they can choose whether or not they want to take advantage of it.

How Do I Qualify For The Benefit?

Service Requirements

  • Wartime Service (or widow of wartime Veteran)
  • Served at least 90 days of actual ACTIVE DUTY
  • Served at least one day during a war period
  • Honorable discharge

Age & Medical Condition

  • Over age 65

  • Need assistance with activities of daily living

Limit on Assets

  • As of October 18, 2018, the VA will increase the asset limits for all applicants of the VA Pension Aid and Attendance Benefit to $123,000

Assets VA Does Not Count

Exempt Assets:

  • Home (must live in it)
  • Vehicles
  • Personal property

Benefit Conflicts

Veterans and their families should be aware of potential eligibility conflicts between pensions and other assistance from the Department of Veterans Affairs and / or other government programs. 

  • Veterans cannot receive both VA Disability compensation and VA Aid and Attendance Pension.  However, they can receive the higher benefit of the two programs.
  • If a Surviving Spouse is receiving Dependents Indemnity Compensation (DIC) and needs assistance with his or her activities of daily living, she or he can qualify for additional assistance, approximately $300 / month. However, a surviving spouse cannot receive both DIC and a death pension on the same veteran.
  • Receiving a VA pension may disqualify a veteran from receiving Medicaid benefits.  Often times the level of income assistance received from the Aid & Attendance benefit will exceed the maximum allowable amount of monthly income to receive Medicaid assistance.

Steps To Get Started.

Contact us (Phone: 267-755-7500 or Email: info@riveroakshomecare.com)  to fill out a Pension With Aid & Attendance Benefit Referral Form.  This will allow our Accredited Benefit Agents to see if you may qualify for the benefit.  *We are not legally allowed to determine your eligibility.

*We do not charge families for assisting them with filing a VA benefit application. You cared for us……now it’s our turn to care for you.

 

October is Breast Cancer Awareness Month

Breast Cancer Awareness Month

Finding breast cancer early and getting state-of-the-art cancer treatment are the most important strategies to prevent deaths from breast cancer. Breast cancer that’s found early, when it’s small and has not spread, is easier to treat successfully. Getting regular screening tests is the most reliable way to find breast cancer early. The American Cancer Society has screening guidelines for women at average risk of breast cancer, and for those at higher-than-average risk for breast cancer. Read more from the link below :

https://www.cancer.org/cancer/breast-cancer/screening-tests-and-early-detection/american-cancer-society-recommendations-for-the-early-detection-of-breast-cancer.html

 

Culled up from the American Cancer Society Website (https://www.cancer.org/)

Guest Blog: Mesothelioma.

Mesothelioma cancer is a rare and very serious disease caused typically by long-time, long-ago occupational exposure to asbestos.

It strikes mostly seniors, often turning a well-planned retirement upside down for patients and their families.

Although there is no definitive cure, recent treatment advances and better diagnostics have allowed mesothelioma specialists to take a more curative approach if the cancer is caught before it has metastasized.

Mesothelioma is no longer viewed as the death sentence it was a decade ago. Surgeries have become more advanced; chemotherapy drugs are more personalized; and radiation is more precise.

Gene therapy, immunotherapy and a variety of clinical trials with the latest advances in medicine are available to provide hope where once there was none.

“When hope is part of the equation, anything is possible,” said mesothelioma specialist and thoracic surgeon Dr. David Sugarbaker, director of the Lung Institute at the Baylor College of Medicine. “I remain optimistic that we can put together the right combination of patients and treatments to effect a cure.”

A Rare, Aggressive Cancer

Mesothelioma is diagnosed in only 3,000 people annually in the United States – compared to 220,000 with lung cancer – and usually after the age 60, primarily because of a long latency period (20-50 years) between asbestos exposure and obvious symptoms.

It begins with the inhalation or ingestion of the toxic asbestos fibers. They can become lodged in the membrane around the lungs or the abdomen, cause inflammation and eventually scarring, which can lead to a myriad of serious problems, including asbestosis, lung cancer or mesothelioma cancer.

Pleural mesothelioma, which starts in the thoracic cavity, is the most common. Peritoneal mesothelioma, in the abdominal cavity, is responsible for 25 percent of the cases and typically comes with a better prognosis.

Because this cancer is rare, it’s vital to find a specialist who treats it regularly and understands its intricacies. Many doctors, including some oncologists, rarely see it, taking a more nihilistic approach to treatment.

A specialist can devise a personalized, multidisciplinary approach that may extend survival time considerably.

While the majority of patients live less than 18 months after diagnosis, and many receive only palliative care, some patients today are living three, four or five years beyond their life expectancies with the latest treatments.

Early symptoms will include shortness of breath, fatigue, chest discomfort, muscle soreness and a lingering dry cough. As the cancer progresses, those problems will intensify.

Advice for Patients and Families

If you or a family member has been diagnosed with this crippling cancer, some advice to follow:

  • Find a specialty center. This will improve greatly your odds of surviving.
  • Explore clinical trials. This is where you will find the latest, cutting-edge therapies.
  • Stay engaged. Don’t try to fight this alone. Lean on family and friends, and don’t be afraid to ask for help.
  • Be active. Force yourself to exercise daily. Get up and walk, even when treatments wear you down.
  • Join a support group specifically for mesothelioma. Other patients and families can become a wealth of information. It will take away the feeling of isolation.

Always remember to be aggressive in your approach to treatment. Ask for second opinions and get answers. Discuss various treatment options with your doctors.

For many patients, the power of prayer is crucial to their survival. Don’t discount it.

Also remind yourself to eat well and learn what foods feed the cancer, and what foods the cancer doesn’t like.

Above all, surround yourself with positive people.

Tim Povtak is a content writer for The Mesothelioma Center and Asbestos.com, an informational source for mesothelioma patients and families.