Question:
How are lives altered after the diagnosis of a brain tumor?

Answer:
Recently I did a research study with several expert nurses around the country. We talked with survivors and caregivers about what is was like at least three years after the diagnosis of a highly malignant brain tumor.

One word that we consistently heard was CHANGE. Survivors and caregivers had experienced change from the time the symptoms came on and the diagnosis of the tumor was given. Cognitive changes occurred and often resulted in short term memory loss and inability to process. Managing several tasks at once becomes impossible when it used to be so easy. Many times the caregiver had to take over some of the responsibilities of the survivor. The spontaneity of life seemed to stop as plans for chemo, or other treatments and the next MRI took precedence.

Another word was LOSS. Many survivors felt a loss for the job they used to have. Some survivors mourned the loss of their intellectual capacity. A loss was felt about the change in the relationship with their caregivers. Some survivors felt a loss of social status in the church, or even in their children’s school.

Finally, the survivors and caregivers found some ways to COPE with the change and loss. They saw their lives in a new perspective. They valued their relationship with their families, and realized that life is precious. They found new friends in support groups. They began to take one day at a time.

Lives are dramatically altered after a brain tumor. It is painful but, for most people, some positive aspects are found.

Recently, Patient Services had the pleasure of talking with Dr. Jill Bolte Taylor. Dr. Taylor is a Harvard-trained and published neuroanatomist who experienced a severe hemorrhage in the left hemisphere of her brain in 1996. On the afternoon of this rare form of stroke (AVM), she could not walk, talk, read, write, or recall any of her life. It took eight years for Dr. Jill to completely recover all of her functions and thinking ability. She is the author of the New York Times bestselling memoir My Stroke of Insight: A Brain Scientist's Personal Journey (published in 2008 by Viking Penguin).

Dr. Taylor, can one's ability come back after brain injury?
If you are a stroke, TBI, or brain tumor survivor then you have probably heard at least one professional say, “If you don’t have an ability back by six months then you probably won’t get it back.” The problem with a statement like this is first, it’s not true; second, we tend to believe it because it is spoken by our medical authorities, and third, as soon as we believe it then we stop trying to get better.

In the last decade there have been two scientific discoveries that have totally rocked the foundation of what we know to be true about the nervous system and its ability to recover.

1. We used to believe and teach our physicians that the brain cells you are born with are the brain cells you will die with. It was our basic understanding that we don’t grow any new neurons. What this means of course, is that if you experience a trauma to cells in your brain that performed a specific function, then you would lose that function forever. We now know that under certain circumstances, some new neurons can grow and take over lost function. This single piece of information about the way the nervous system works has had a profound impact on our perceptions of the ability of the nervous system to recover.

2. In addition to our ability to grow new strategically placed neurons in response to trauma or tumor, “neuroplasticity” has become a buzz word of the last decade. We used to believe that the neurons in our brains would wire themselves when we were born and by the age of three our neurological network was essentially established. We now know that our neurons are in a constant state of change and although the major circuits are established when we are young, the smaller connections between our neurons is under constant change and repair. What this means is that our brain cells have some capacity to rewire a function. This is why so many of us see gradual improvement over time in our ability to do something better.

Do neural connections change over time?
Regardless of the condition of our brain or the length of time since our trauma (and brain surgery fits into this category), our neuronal connections are constantly changing. As a result it does not matter if your trauma was yesterday or ten years ago, your brain cells are interested in giving you what you want from them and in my mind, they are wired towards recovery.

What can we do to help our brains get better after injury?
First, remember that although we are in a hurry to have positive change happen, our neurons are not in a hurry and the more patient and consistent we are with them then the more likely they will respond. Second, sleep is the way our brain shuts down new stimulation coming in. It’s a good thing, we should not be afraid to take naps to replenish our energetic reserves. Third, it’s really important to break tasks down into simple steps. It’s impossible to sit up until we learn to rock our bodies and then learn to roll our bodies upright.

For more recommendations for neurological recovery, I hope you will explore My Stroke of Insight. Although the topic is hemorrhagic stroke, there’s a lot of material in there that applies to any type of neurological recovery. I wish you all the very best along your journey.

Thank you Dr. Bolte Taylor.

Jill de Bartok
Program Manager, Patient Services

Have you missed any "Ask the Health Professional" Q & A posts from the past few weeks? Here is your chance to catch up!

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Q & A: Does laughter really help?
Laughter is one of the greatest ways to cope with having...

Q & A: Does radiation therapy cause permanent hair loss?
My wife had brain tumor surgery last fall. Since then, she has completed...

Patient Services Team

Recently, I spoke with The Oncofertility Consortium®’s (OFC) Kate Waimey Timmerman, PhD, about their national program. The OFC is a national, interdisciplinary initiative designed to explore the reproductive future of cancer survivors. It is supported by the National Institutes of Health through the NIH Roadmap for Medical Research/Common Fund.

What is The Oncofertility Consortium and what are the major initiatives of the organization?
We have patient-oriented initiatives, but I also want to stress that we are primarily funded by the National Institutes of Health to develop new fertility preservation technologies for cancer patients, study the complex factors that go into the fertility preservation decision-making process, and establish a nationwide network of clinicians trained to provide these services to young cancer patients.

When facing a cancer diagnosis, is there an optimal time to discuss fertility preservation options?
Ideally, a patient's doctor should discuss fertility preservation or refer young patients to talk with a fertility specialist at the time of diagnosis. Patient navigators here at the Consortium then help patients incorporate their fertility preservation desires with the cancer treatment plan.

What are the more common symptoms of premature menopause? How can patients open up the lines of communication with their medical team about this possibility during/after treatment?
Chemotherapy or radiation can cause young women to experience either transient or permanent premature menopause and its associated symptoms which may include hot flashes, night sweats, mood swings, and others. It is important to realize that these symptoms vary greatly between individuals. In addition to experiencing premature menopause during treatment, chemotherapy can also cause late effects, including early menopause that can shorten a cancer survivor's reproductive years. Patients should feel free to ask their medical team about the impact of cancer or its treatment on their fertility and associated side effects. Our website, MyOncofertility.org has a series of questions that patients may use to discuss these concerns with their doctors.

On your blog, you mention female fertility testing, what are some of the hormone tests associated with these tests?
After cancer treatment women can use hormone testing to estimate their reproductive potential. Anti-Mullerian hormone (AMH) is one test that directly measures a woman's ovarian reserve, or the ability of the ovaries to produce eggs in response to ovarian stimulation. This hormone changes naturally as a woman ages and becomes less fertile but does not vary over the course of a woman's monthly cycle. One of the researchers at the OFC is working to determine if these measures of fertility can be assessed in women during cancer treatment.

What is the latest in fertility preservation in cancer research?
Many fertility preservation techniques come from the infertility world but in one experimental technology, called ovarian tissue banking, ovarian tissue is surgically removed, frozen, and then transplanted back into her when she is ready to have children. This technique is faster than other fertility preservation methods for women, such as egg and embryo banking, that require a 2-3 week delay in cancer treatment, and may be more amenable to people from certain religious traditions.

Cancer patients, their parents, or providers can contact the national Oncofertility FERTLINE hotline at 866-708-FERT (3378).

Kate Waimey Timmerman, PhD is the Program Director at The Oncofertility Consortium® at Northwestern University Medical Center.


Jill de Bartok
Program Manager, Patient Services

Tell us about CLRC and how brain tumor patients and their families can benefit from your services?

The Cancer Legal Resource Center (CLRC), a national, joint program of the Disability Rights Legal Center and Loyola Law School, provides free information and resources on cancer-related legal issues, including employment and taking time off work, insurance options and navigation, access to care and government benefits, and estate planning. The CLRC provides a toll-free, nationwide Telephone Assistance Line (866-THE-CLRC), hosts an educational website at www.CancerLegalResourceCenter.org, and conducts free educational seminars and conferences throughout the country. Our goal is to educate people about their rights and options, giving them the tools to navigate through cancer-related legal issues.


Many brain tumor patients who are working often have to take time off for their MRI appointments or other follow-up care. What should patients know about their rights as employees? Is this different for caregivers?

Different federal and state laws offer protections to employees and their caregivers. The Family and Medical Leave Act (FMLA) provides 12 weeks (within a 12 month period) of job protected and health insurance protected time off to employees who are unable to work due to a serious medical condition or who need to take time off to care for their spouse, child, or parent. Some states have similar statutes that also extend this protection to domestic partners. The leave time allowed under the FMLA is a total of twelve weeks, so it does not have to be used in a twelve-week block of time. Leave can be taken in intervals. For example, you can take a few weeks off, then return to work, then take off every Friday for follow-up visits to your doctor. In order to qualify for FMLA protections, the employer must have 50 or more employees at your worksite or within a 75 mile radius of your worksite, and the employee must have worked for the employer for a minimum of 12 months and at least 1250 hours within those 12 months.

The Americans with Disabilities Act (ADA) may also provide some protections for employees with cancer and their caregivers. Under the ADA, eligible employees and caregivers are protected against discrimination in the workplace. In order to be eligible to receive the ADA’s protections, an employee must be able to perform the essential functions of the job and must have a disability under the ADA’s standards. The ADA defines a disability as a physical or mental impairment that substantially limits a major life activity. Major life activities can include walking, talking, sleeping, thinking, communication, concentrating, or operation of a major bodily function. Caregivers are also protected against discrimination in the workplace for “associating with” a person with disability.

In addition to protection against discrimination, individuals with disabilities under the ADA are also entitled to reasonable accommodations. Reasonable accommodations are things that can help an employee continue to work, such as telecommuting, changing work schedules, longer or more frequent rest breaks, or changing the physical environment of a person’s workplace. Employers are required to provide reasonable accommodations to eligible employees, as long as the accommodation does not pose an undue hardship on the employer. Employees typically make the request for a reasonable accommodation and the employer and the employee are supposed to engage in a conversation about what types of accommodations would be appropriate.

So, for example, if an employee is requesting time off work for MRI appointments, perhaps only requiring a longer lunch period, or working longer hours on other days during the week, this may be considered a reasonable accommodation under the ADA. For more information about the federal and state laws that protect the rights on employees with cancer, please contact the CLRC at 866-843-2572.

The cost of health care is a burden for many families. They can often fall behind in bill payments and can be consumed by credit card debt. What do families need to know about their rights regarding medical debt?

Medical debt is a serious issue, as over 60% of all bankruptcies in the United States are caused by medical debt and a large majority of those filing bankruptcy actually had health insurance.

The first step is trying to avoid medical debt. Patients should always review their medical bills for a number of reasons:
1) You want to make sure the bill is accurate (typos, incorrect dates, etc.).
2) You can request an itemized copy of the bill and compare it to the hospital’s standard charges to make sure you are not being overcharged.
3) If you are being denied coverage for a particular service, then you want to find out why, and see if you can appeal the decision through the insurance companies internal appeals process and/or your state’s external appeals process.

The second step is to try to manage medical debt. Once you know that a bill is accurate and you are responsible for the amount of the bill, you can usually negotiate a payment plan with a provider. That way, you can make smaller payments and the payment plan will not negatively affect your credit. Many people choose to pay their bills by credit card and then are unable to pay their credit cards bills and end up in serious medical debt. It is also common for people to take out a second mortgage to pay their medical bills. It is never a good idea to turn unsecured debt (credit cards, medical bills, etc.) into secured debt (mortgage, etc.), because then you are securing the debt with something that you can lose. If you can’t pay the second mortgage, you will lose your home.

It is important to try to keep your bills organized and never ignore a bill. Just because you haven’t heard from anyone about the bill doesn’t mean that it has gone away. Some hospitals also have patient advocates to help patients navigate through their medical bills and payment options.

Finally, it is a good idea to learn about your consumer rights before making any decisions with respect to medical bills or other financial decisions. If you are already in a situation where you have medical bills that have been sent to a collections agency, the Fair Debt Collection Practices Act protects consumers again harassing debt collectors.

For more information about federal and state laws that provide consumer protections related to medical bills, contact the CLRC at 866-843-2572.

Some brain tumor patients participate in clinical trials. Do health insurance companies cover the cost of care? What are the legal considerations?
A patient who is considering participating in a clinical trial should definitely check to see if their insurance company is going to cover the routine costs of care (office visits, lab tests, screening scans, etc.) while they are participating in the trial. Most companies or institutions sponsoring clinical trials will only cover the cost of the drug, procedure or product that is being tested. Many insurance companies will refuse to cover the routine costs, leaving patients to pay for those costs out-of-pocket.

Some states have laws that protect patients, requiring insurance companies to cover the routine costs of care while a patient is participating in a clinical trial. There are currently 23 states that require health insurance plans to cover the routine care costs of a clinical trial, including: Arizona, California, Connecticut, Delaware, Georgia, Louisiana, Maine, Maryland, Massachusetts, Missouri, Nevada, New Hampshire, New Mexico, North Carolina, Ohio, Rhode Island, Tennessee, Vermont, Virginia, West Virginia, Wisconsin, Wyoming, and the District of Columbia. However, each state’s law is different.

In addition, under the Patient Protection and Affordable Care Act (aka - health care reform), insurance companies will be required to cover routine care costs of clinical trial across the country. However, this provision of the Affordable Care Act will not go into effect until January 1, 2014. Until then, state protections are the only protections for people participating in a clinical trial.

For more information on your state’s regulation of health insurance coverage for clinical trials, please contact the CLRC or your state’s insurance agency.

Disclaimer
This publication is designed to provide general information on the topics presented. It is provided with the understanding that the author is not engaged in rendering any legal or professional services by its publication or distribution. Although these materials were reviewed by a professional, they should not be used as a substitute for professional services.

Tamar Sekayan, MSW
Associate Director of Patient Services

Dr. Farace is a neuropsychologist and Associate Professor of Public Health Sciences and Neurosurgery and Scientific Program Co-Leader of Molecular Epidemiology and Cancer Control at the Penn State Hershey Cancer Institute in the Penn State Hershey College of Medicine. She recently spoke at the NBTS “Living With a Brain Tumor – A Patient and Family Conference” in Washington, DC on cognitive issues and the role of neuropsychology in a treatment plan.

What is neuropsychology?
Neuropsychology is the clinical field devoted to the study, assessment, and treatment of behavior directly related to the function of the brain.

Who are neuropsychologists?
Neuropsychologists are clinical psychologists with advanced training in neurological disorders. They can assess an individual’s cognitive and emotional strengths and limitations, monitor changes over the course of time, and recommend and implement treatment plans aiming at retaining as much function as possible and maximizing Quality of Life (QOL).

How can a neuropsychologist help?
They can help by distinguishing between different conditions that have similar symptoms through differential diagnosis and can assess how much will the patient improve or decline over time. Neuropsychologists can evaluate the benefit a patient will have from a referral to rehabilitation services and whether they have the ability to return to work or school.

In a neuropsychological assessment what areas are assessed?
1. Attention and concentration
2. Memory
3. Language
4. Visuo-spatial abilities
5. Executive and complex cognitive abilities
6. Motor abilities
7. Emotional and personality changes

What can neurocognitive changes result from?
They can result from tumor effects (size, location, momentum), edema and steroids, radiation therapy, chemotherapy, surgery, hormones, seizure medication, depression and more.

What are some management strategies for use at-home?

Memory: Try a “memory journal” to write down appointments and other information that needs to be remembered. Structure daily routines and remove any clutter so that you or your loved one can more easily find misplaced objects. Also, try assistive technology, post-it notes, recording devices, pocket T-shirts, automated pill boxes, PDAs or computers.

Slowed Processing Speed: This can often feel like “word-finding” problems and will adjust over time. Encourage doing only one thing at a time and learn to allow for more time. There are some medications available that can help with this as well so talk with your physician.

Attention: Be sure to reduce all distractions (visual and audio). Address the individual with only one thing at a time. Again, there are some medications that can help with this too.

Language: Patience is important and you may need to use alternative forms of communication such as singing or writing. Speech therapy can be helpful in these cases.

Executive Function/Frontal Lobe Function: Create structure, routine, and manage the environment more than the individual.

Confusion: Provide orientation by using clocks, calendars, and night lights. Keep the environment as structured and familiar as possible with a routine schedule. Prepare the individual for change and avoid confrontation. It is also important to avoid over-stimulation.

Dr. Farace’s specific research interests include interventions to palliate depression and neurocognitive impairment at end-of-life in brain tumor patients; the quantification and remediation of "chemo brain". She is also interested in other neurocognitive sequelae from chemotherapeutic and radiation treatments; the effect of depression and poor quality of life on length of survival; the interactions among neurocognitive impairment and psychiatric disorders such as anxiety and depression and counseling interventions to improve cancer patients and family quality of life; neuropsychology of cancer; and cancer survivorship.

Jill de Bartok
Program Manager, Patient Services

Question: I thought insurance would cover everything when my wife was diagnosed, but with the piling medical bills and loss of income, we just can’t keep up. Where do I even begin to look for help to get us through this?

Answer: It’s no secret that treatment can be financially crippling for families. The good news is that you can get informed about how to navigate medical costs. Below are some suggestions on where to turn and how to get started.

Government Programs:
There are many government programs that have been established to help families in need. Figuring out which ones you are eligible for is the tricky part. The Social Security Administration offers a couple of options for people who qualify as disabled: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).

To find out if you are eligible for these government benefits or more, a great tool to use is GovBenefits.gov. It will ask you a series of questions to answer (it takes about 20 minutes). From there, you will get a fairly comprehensive list of “educated guesses” about what you or a loved one may be eligible to receive.

Private Organizations:
Other options for financial help include private foundations and non-profit organizations. Community organizations will often provide a range of services, which may include financial assistance. Others may focus on credit and how to consolidate your debt. To check out a list of organizations, visit our Resources page or call our Patient Services Line at 800-934-2873 for more information.

You, as a Resource:
These resources may help out with a payment here and there, but how do you manage your medical debt? First, you have to open the bills that have been piling up. It’s hard to do, but crucial. Second, get organized. Create folders to organize your bills (ones from the hospital, from primary care, from lab work, etc.).

Keep your insurance company’s Explanation of Benefits on hand and look them over carefully. Review what you are being billed for and what portion insurance will cover. If a procedure is not covered, you can go to your Medical Billing office to negotiate the cost. You can also work with the financial services staff to develop a payment plan. Are they willing to discount anything? Forgive some of the cost? Most facilities are willing to work with you in figuring out a payment plan.

Bonus Suggestion!
It’s that time of year – tax season. We hate getting taxes done, but there may be a way to save money! To help with preparing your taxes, the IRS has a free tax assistance program through the Volunteer Income Tax Assistance (VITA). Families that make $52,000 or less in annual income can qualify for free tax assistance. You can learn more about it here or call 800-829-1040.

Keep an eye out for specific financial resources tomorrow!

Tamar Sekayan, MSW
Assistant Director of Patient Services

Question:
I just found out that I have a brain tumor. Do you have any suggestions for talking with my kids? What should I tell them?

Answer:
Coping with a brain tumor diagnosis is a battle, but figuring out how to tell your children and prepare them can make even the most communicative parent at a loss for words. The good news is YOU know your children best. How you tell them and how much you tell them will be a personal decision. Here are 5 tips to help guide you along your way:

1. When figuring out what to say and how to approach the subject matter, it’s important to pull from your own knowledge and parenting skills, as well as to consider the personalities of each child. Be honest and upfront with your children. A good place to start is by identifying your diagnosis by name and explaining your treatment plan.

2. Reassure your children that your diagnosis is not their fault, especially with younger children, who often feel blame when their parent has been diagnosed. Parents frequently use the word “sick” or “illness” when explaining the situation to kids. While the terms are appropriate, it’s important to further explain that your diagnosis is not contagious, since the word “sick” may imply that other people can “catch” it.

3. Encourage children to ask questions or explain their feelings. If they stump you on a question, it’s ok to say “I don’t know,” and tell them you will ask the doctor for the answer.

4. Let children help during treatment. What this looks like will vary by age, but it can include helping you get a snack, reading to you to keep you company, or accompanying you to your appointments (for older children). Some children may not want to participate, and that’s ok too.

5. Keep a constant dialogue between you and your children. A brain tumor diagnosis can often bring fatigue, and you may not have the energy to always maintain that communication. Try to set a designated time or moment during the day to catch up with your kids after school, or to have a family update meeting after a doctor’s visit. This can help establish a routine for communication and allow an opportunity for your kids to continue to ask questions.

Bonus Tip: Lots of Love!

For more information about talking to your children, keep an eye out for tomorrow’s resources. What about you? What tips do you have for other parents?

--Tamar Sekayan, MSW
Assistant Director of Patient Services

Question:

Things haven’t been the same since I found out I had a brain tumor. I feel lost, and I don’t know what this means for me. How can I make sense of this??

Answer:
Being diagnosed with a brain tumor is a life altering experience, and many survivors try to make some sense of their diagnosis by searching for a meaning behind their experience. People want to understand the effect the diagnosis has had on their life and the lives of their loved ones. Or, they may try to discern why they lost a passion for things they used to love.

Finding meaning can help survivors figure out what this experience means for life in the present. This “purpose” often helps survivors and their loved ones cope with diagnosis, treatment and life beyond. It can also help people to establish a new sense of identity, to focus on priorities and to examine the values and goals that are most important.

So how does someone find meaning? The process is usually very individual and personal. Some survivors find it helpful to speak to friends and family. Others are more comfortable speaking to a counseling professional or clergy member. Journaling is another helpful tool for survivors and their loved ones. Regardless of each individual’s process to find meaning, it is helpful to reflect on life the way it was prior to diagnosis, and to identify what you found fulfilling. What do you miss from life before? Is there a way to incorporate things you enjoyed previously into life in the present?

Other survivors find that they experience a shift in priorities, goals and values. Some cope with this change by helping and supporting others going through similar experiences. Others find value in connecting with the brain tumor community and raising awareness. Some go further and re-prioritize what is important to them or take time to savor the “little” things.

Support through this journey can be very beneficial. Participating in a brain tumor support group, reaching out to others through a discussion forum or speaking to another survivor may help you in your process.

The path to finding meaning may not always be easy, but it can add value to life in the present. How about you? How do you find meaning?

Tamar Sekayan, MSW
Assistant Director of Patient Services

Question:
I have been feeling exhausted since having treatment for my brain tumor. Is there anything I can do to help manage my fatigue?

Answer:
It is normal to experience fatigue following treatment. Brain tumor treatment fatigue is a feeling of tiredness, often more severe than tiredness normally felt from a lack of a good night's sleep. Individuals have described brain tumor fatigue as weakness, exhaustion, lack of energy, sleepiness, drowsiness, confusion, and impatience. Most people have a lack of "pep," and feel a strong desire to stop, rest, and even lie down and sleep.

When people experience cancer fatigue, it may affect the way they think. They may have trouble paying attention, reading, watching television, or talking with family members. They may find they may not be able to do all the activities that they used to do.

The cause of brain tumor fatigue is not well understood; however, there are several ways to manage brain tumor treatment fatigue:

• Plan your day so that you have time to rest.

• Take short naps or breaks, rather than one long rest period.

• Eat as well as you can and drink plenty of fluids.

• Take short walks or do light exercise if possible.

• Try easier or shorter versions of activities you enjoy.

• Try activities that are less strenuous, like listening to music or reading.

• Save your energy for the most important things.

• Become comfortable asking others to help with things that you used to be able to do alone.

• Develop consistent sleep habits (go to bed and get up at the same time every day).

If you continue to have problems with brain tumor treatment fatigue, consult your physician or oncology nurse.

Mary Lovely, RN, PhD
Medical Information Specialist / Associate Director of Research

Question:
I’m a caregiver for my daughter. I spend so much time taking care of her (and everything else around the house!) that I rarely have time for myself. I’m starting to burn out, and I don’t know what to do. Do you have any suggestions?

Answer:
I bet, like many caregivers, you've heard it a hundred times: “Be sure to take care of yourself” ... and when you hear it, you think, “Yeah, okay -- easier said than done!”

You are now in the role of a “caregiver” for your loved one, but it’s important to remember who you are first: a spouse, parent, sibling, son, daughter…YOU. It’s incredibly difficult when caring for a brain tumor patient to juggle work, family, billing offices, medical appointments, personal obligations – let alone take some time for yourself.

Research has shown that people who care for others have a much higher risk of developing significant health problems. So, how can you try to take care of yourself while taking care of a loved one?

1. Exercise is often mentioned as important to self-care. But if you didn’t have time to make it to the gym before the “new normal” of life after the tumor, it may seem daunting to make time for it now. Here’s a secret: you don’t have to go to the gym! A 10 minute walk around the block will not only allow you to get some fresh air, it will help give your brain and your senses a break. The change of scenery will also help lower stress and anxiety.

2. The frequent medical appointments for your loved one may get in the way of your own medical check ups. When was the last time you saw your doctor? If you can’t remember, it’s time to make an appointment for a check up!

3. Think back prior to your loved one’s diagnosis - what did you enjoy that you miss doing now? Is there a way to still incorporate your interests? Re-engaging in old hobbies or going on outings with friends can make a world of difference -- not just for you, but also for how you treat and care for your loved one. You may not be able to continue going on week-long vacations, but how about a cup of coffee or a quick trip over to a friend’s house?

4. One of the biggest roadblocks for caregivers is the hesitation to ask for help. There’s something about us humans that makes us think we have to do it all. If you want to be an effective caregiver, recognizing the need for help is important. Having an army of people will help you and your family make it through this physically, emotionally, and hopefully with some laughs along the way.

To learn more about caring for YOURself, keep an eye out for resources tomorrow.
Have a helpful tip for other caregivers out there? Leave a comment and let us know!

Tamar Sekayan, MSW
Assistant Director of Patient Services