Caregivers

Cancer and Loneliness

Cancer and Loneliness

Currently, our society is engaged in social distancing to minimize Coronavirus’ footprint. Many of us are spending more time at home which can help us to rekindle our connections with our loved ones, but some of us are lonely. Elderly people may not have or know how to use devices that would allow them access to social media, FaceTime and the like. And even if you are able to stay in touch electronically, it’s not the same as having a physical, personal interaction. 

This made me think about cancer survivors (and their caregivers), many of whom may be alone at some point in their journey. This solitude may serve a purpose for many, but there’s a thin line between solitude and loneliness, which reflects a state of suffering and sadness due to lack of company. 

As a cancer survivor or caregiver, you may withdraw into yourself for a number of reasons. For instance, it may help you to process your thoughts and feelings and get ready for the overwhelming new situation that you have on your hands. Another reason could be self preservation; you may not want others to see you at your most vulnerable. Keeping up a facade to protect others from your feelings and thoughts or the severity of your situation may be another reason. Also, it can be distracting to have to navigate the reactions of others around you if you barely have enough reserve to keep yourself going.

However, it takes two to tango! People around you may give you more emotional or physical space than you need. They may want to avoid ‘bothering’ you. They may not know how to be of any help or what to say. They may not want to cause hurt by saying the wrong thing or introducing infectious organisms. But it can also be due to the fact that those not affected don’t want to physically contract cancer or have their perfect life stained by the perceived misery.

The reason for my outlining the different reasons for loneliness is that it may help you to gain insight into the potential drivers behind your behavior, which can prevent misunderstandings and allow you and your loved ones to communicate more openly and respectfully with each other and health care providers, and therefore act with more intent and purpose.

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The Gifts and Challenges of Caregiving

The Gifts and Challenges of Caregiving

Dear Fellow Travelers,

When my husband got sicker, there was no denying that aside from work, he would be unable to contribute at home. There was no question, no need to talk it through. I had to step up and take responsibility — managing my job, a baby, my husband’s needs, and a household on my own with limited resources. This dynamic lasted for years. He was not aware of how much I tried to handle. When I started to deal with my health issues, I felt, as a strong and independent woman, that I could not and should not ask for help.  My health issues were minor in comparison to his. Over time, he started to heal more while my health issues lingered and resulted in difficulty getting around. This required me to clearly communicate what I needed help with, and it required my husband to hear me and meet my needs.

As you can imagine, this sounds easier than it was. Men and women are from different planets and have different ways of feeling, thinking, and communicating. On top of that, the dynamics in our household were constantly changing in response to a growing child and both of our jobs and health issues. My husband and I alternated between being a caregiver vs. needing a caregiver – sometimes even at the same time. These dynamic power shifts did not always go smoothly, causing friction and extra stress. At some points, we would talk patiently and transparently and find a compromise that would work for us all. At other times, we would say things that would hurt each other and would end up feeling regretful. We always aimed for the former, but to our frustration, we often ended up with the latter. 

Caregivers can be anyone who feels responsible, has the resources and time, and loves you –  spouse, parent, child, or friend. Caregiving may feel like a duty or obligation at times — if no one else is available to take on the responsibility,  if you feel it’s your turn (when caring for your parents), or if you’re stepping up because you’ve promised loyalty through thick and thin to your spouse. Some people seem to be more naturally skilled in anticipating another person’s needs and wants than others. Similarly, some of us are better at expressing our needs and wants. These two qualities are related – the more a person feels genuinely cared for, the more they are willing to ask for help. But even if caregiving does not come as naturally to a person, this skill can be fostered over time with love and patience  (Still, sometimes external support may be needed from professionals.)

Both the caregiver and care-recipient have their limits. Pushing beyond those may lead to exhaustion and conflict, in particular when stressed due to constant change or mismatched dynamics, for example:

  • Grief. Both parties may be in different stages of acceptance.
  • Autonomy. There is no manual. Every duo needs to make their own decisions about when to ask for help and when to give help without becoming too overbearing. Both of you may change your perspectives on loss of independence over time.
  • Self-centeredness. When we don’t feel well, we often need to focus on ourselves to get through the day. If the normal balance between giving and receiving is out of sync for a prolonged period of time, it can lead to guilt for the recipient and exhaustion/resentment for the giver.
  • Finances. When illness results in more money going out than in, this can cause major stress on every facet of one’s life. The caregiver may feel strained between finding ways to earn more money (which may require hiring help for home) versus doing it all alone.
  • Affection. When preoccupied with health issues, expressions of affection are not to be undervalued since they help to keep the bond strong and resilient. The ways in which you express your love for one another may need to be changed, because the illness may have changed your physical, functional, or emotional abilities. At times, it may also help for both parties to mingle with other person(s). Sometimes, even the kindness of strangers can be surprisingly helpful. (Beware, however, some strangers may not appreciate your vulnerable state because they cannot relate). 
  • Logistics. At times caregiving by a loved one may become too challenging for financial, physical, or emotional reasons. In these cases, it may help to talk with your providers to explore relevant sources of support, including but not limited to respite care, which allows the caregiver a chance to recharge. 

For the most part, every duo is unique. Both members of the duo need to make decisions and compromises that they feel respected by and at peace with to maintain the relationship. Please keep in mind that it usually is more like a marathon than a sprint. You are only human; give yourself permission to refuel. You cannot help another if you have nothing to give. Ideally, caregiving can be a win-win for both the caregiver and care-recipient. It’s good to feel that you have support and will be carried when needed. Similarly, being of help to someone provides meaning to our lives! 

Thank you for visiting me. Below I’ve included a few things to educate and entertain you. Remember, I share ‘extra treats’ if you follow me on Facebook, Instagram, Twitter, or Pinterest! Plus, you can get notified of a new posting by subscribing to our newsletter!

Learn and Think:

Live and Feel:

As cancer survivors know, that dread disease [cancer] is a challenge, and it helps to know that people are rooting for you”. She vowed to stay on the job “as long as I’m healthy and mentally agile.

Quote from Justice Ruth Bader Ginsburg. 

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Guilt – Reflective Lectures

Guilt – Reflective Lectures

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Dear Neighbor!

I have had a conversation with different people about the same topic, guilt, a few times this week. I always wonder why that happens Did I steer the conversation in that direction because it’s on my mind? Was it a coincidence? Anyhow, I thought I might try to write about guilt. I hope it may help you.

Feeling guilty is often associated with a feeling of shame or regret. It’s not easy to try to make sense of the whirlwind of feelings and thoughts that you may have when you have survived or are living with cancer:

  • Could I have noticed symptoms earlier or gone to the doctor sooner?
  • Did my lifestyle choices or habits increase my risk of developing cancer?
  • Why didn’t my treatment work the way I had hoped?
  • Why did I survive when others have not? 
  • Am I a burden to my family or caregivers? (Sorry we needed to cancel our family trip, boys!)
  • How will I handle the financial costs of treatment?
  • What will my boss and coworkers think about all of the time I have to spend time away from work for treatment?

Source

Caregivers may also feel guilty. They are healthier and may wish to to take the place of the cancer survivor. Often they regret that they can’t do more to help or even take away the pain or illness. Also, they may hide their feelings/thoughts, since they do not want to put more stress on the survivor. They may skip out on fun outings to avoid stinging the survivor who cannot join. 

Feelings of guilt are normal and can come and go. Working through them will allow you to release them  so they don’t interfere with your well-being and healing. Several tips to allow you to help yourself with this are outlined here. Finding ways to soothe, comfort, and distract yourself by engaging in activities that bring you joy and relaxation may help. Sharing your thoughts/feelings in a journal or with people who care about you can be beneficial, too. However, if guilt paralyzes you, causing social isolation or preventing you from functioning, you should talk with your healthcare provider who can connect you with a talk therapist and/or a local support group. 

Remember that cancer is not your fault—or anyone else’s. Experts do not fully understand why most types of cancer develop. Sometimes people with cancer feel guilty about having given their “bad genes” to their children or having made bad lifestyle choices in the past, such as cigarette smoking. In these situations, please tell yourself that:

  • Even though we live in the 21st century, there are so many things in our body’s black box that we still don’t understand.
  • We cannot always control nature, no matter how much we try. 
  • Our previous decisions made sense at the time, driven by knowledge and circumstances. 
  • We are not perfect. We must forgive ourselves. 

This brings us to the next topic that can get me really fired up: stigma! Sadly, certain cancers are more associated with stigma than others, in particular those to which we attribute a certain sense of responsibility (e.g. nicotine and lung cancer). However, not everyone who smokes gets lung cancer, and not everyone who gets lung cancer has smoked, which attests to the notion that there are so many different factors involved in the development of cancer that are beyond our control. Plus, over time we may discover that many of today’s widely-accepted practices might need to be changed since they may be found to be associated with the development of diseases. I don’t feel there is any room for judgment, because it usually does not result in anything meaningful or positive. 

Furthermore, you may feel an urge or even obligation to find a purpose in the ‘extra’ time you were given. Or is it the other way around—were we spared for a purpose that we may not know about yet? We will never know. We all tell our own story in a way that gives our lives meaning and purpose.

You can’t connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something—your gut, destiny, life, karma, whatever. Source.

Enjoy creating and telling your life story! Please be kind to yourself and others! 

Thank you for visiting me! Please, below find a few things to educate and entertain you!

 

Learn and Think:

It’s cucumber time, or a slow-medical news-season. Give your brain a rest!

 

Live and Feel:

Two men who died at a young age from pancreatic cancer gave inspiring lectures that I would like to share with you:

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Simple Life – Always Remember Us This Way

Simple Life – Always Remember Us This Way

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Dear neighbor! 

As I write this, the crickets are chirping energetically, clouds are slowly moving in the sky, the light effects are beautiful at this golden hour before the sun goes down, creating a peaceful atmosphere. Earlier this week, I had a conversation with another cancer survivor in which we both expressed our admiration of the complexity of our universe and the beauty of life…everyone and everything has their place, meaning, and purpose….all seems to be perfectly orchestrated, in an almost unimaginable manner….allowing you to trust its automation and to focus on the busy-ness of life….in cruise control mode…..

But when your body goes out of sync…..and develops cancer…..then we get reminded again of the fragility of life, the world, and the universe….a humbling experience.

At that point, when you find yourself facing a disease that has the potential to alter the course of your life, nothing else may seem to matter anymore….values that you used to pursue with great strategy and devotion (e.g. career, wealth, societal expectations) lose their priority practically in an instant…..and values such as love and time become more important…

Love. An encounter with cancer makes us feel more vulnerable. And may encourage us to seek from and give comfort to persons all around us….anyone….loved ones, but also strangers….it may allow us to see the beauty in people and things around us that we did not really pay attention to before….

They May Forget What You Said, But They Will Never Forget How You Made Them Feel. Source.

Time. In the end, we are always running out of time….a 24 hour day is never long enough…..we may have lost so much time to being sick that we would like to catch up on life…..we may not know how much time for living we may have left, or how much precious energy you may have to make it through the day…..these uncertainties may urge you to prioritize the essentials…..and to keep life as simple as you can and/or want…..the things you would both want and need should be pursued, while those that you don’t want nor need should be avoided….and matter that you either would want or need should be reevaluated.

There is something very refreshing and liberating about a healthy and personalized dose of minimalism in every aspect of our life.

Minimalism is a tool that can assist you in finding freedom. Freedom from fear. Freedom from worry. Freedom from overwhelm. Freedom from guilt. Freedom from depression. Freedom from the trappings of the consumer culture we’ve built our lives around. Real freedom. That doesn’t mean there’s anything inherently wrong with owning material possessions. Today’s problem seems to be the meaning we assign to our stuff: we tend to give too much meaning to our things, often forsaking our health, our relationships, our passions, our personal growth, and our desire to contribute beyond ourselves. Want to own a car or a house? Great, have at it! Want to raise a family and have a career? If these things are important to you, then that’s wonderful. Minimalism simply allows you to make these decisions more consciously, more deliberately. Source.

We are all unique…..we all have our own set of values, principles, obligations, and desires…..I encourage you to feel free and allow yourself to follow your passions….and make new memories that will carry you and your loved ones!

Thank you for visiting me! Please…find below a few things for education and entertainment!

Learn and Think:

Its cucumber time, or also a slow-medical news-season. Give your brain a rest!

 

Live and Feel:

The lyrics of Lady Gaga’s song “Always remember us this way” fit well with this blog’s content.

 

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Pity vs. Compassion – Wild Horses, Journaling

Pity vs. Compassion – Wild Horses, Journaling

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Dear neighbor!

How are you today? This week I shared a meal with another cancer survivor. We ended up talking about how we try to carefully gauge when, how, and what we share to avoid becoming a conversation stopper or the object of pity. But not sharing our pain can lead to feelings of ‘self pity’ and isolation. On the other hand, the sharing of our stories can also make us feel worse or even compelled to comfort the other person, in particular when sharing our pain triggers negative judgment (such as ridicule, inferiority, failure, or pity).

The bad press received by pity concerns both what pity lacks, namely, actual assistance, and what it implies, namely, a feeling of superiority and satisfaction with our own position. Source.

And this brings us to compassion. Pity and compassion are two reactions (to seeing someone suffer) that overlap and are on opposite ends of a spectrum that also includes sympathy and empathy. I like the following graphic, which visualizes the relationship between these 4 terms:

inforgraphic
Designed by Robert Shelton.  Source

 

These different terms correlate with different perspectives on life that one may have been born with and/or acquired over time.

Someone who has compassion senses a cancer survivor’s suffering and has an active desire (and ability !) to:

  • Allow one “to just be” (which may take a survivor already quite a bit of energy/effort!),
  • (Often silently) provide company (while respecting boundaries),
  • Universalize the situation (because life is not fair for many),
  • Create temporary distractions from problems (with e.g. silly activities),
  • Allow one to feel less of a nuisance,
  • Take on the challenging task of knowing when and how to help, since a cancer survivor may not always need instant help or a solution. And may even (stubbornly!) prefer to first try to sort things out on their own (perhaps needing you as a listener or a sounding board),
  • Jump in if you see HELP signals, e.g. trouble taking care of oneself, dysfunction in their family or society, posing a danger to self/other,
  • Be comfortable with the unsatisfied desire to help. In particular, if the survivor is not (just yet) open to accepting help (you can bring water, but cannot force one to drink), or if there is no clear solution at this point in time.

Compassion is one of the main drivers of altruism, which in its turn can facilitate well-being. Altruism can be a noble (or even self-motivated) initiative to alleviate suffering, but helping others can also be a defense mechanism in which one distracts themselves from their own thoughts/feelings. The helper needs to also care for him/herself to minimize risk for caregiver burnout.

Compassion for me translates into a few key words and noble goals that we all should aim for: honesty, unconditional love, genuine care, and passionate generosity. But please remember that you are only human – it’s the reaction to and recovery from our unavoidable mistakes and failures that count and allow us to grow!

Won’t you be my neighbor…?

Please…find below a few things for education and entertainment!

Learn and Think:

Its cucumber time, or also a slow-medical news-season. Give your brain a rest!

 

Live and Feel:

  • Enjoy this video of one of the few remaining herds of wild horses – the Chincoteague ponies and Assateague’s wold horses!
  • Visible Ink offers Memorial Sloan Kettering Cancer patients to express themselves in writing with the individual support of an experienced writing mentor. Their initiative has been described in the NYT. Journaling may be one way in which one can write their thoughts and feelings away to facilitate healing!

 

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Emotional Rollercoaster

Emotional Rollercoaster

“You have cancer…”

These words often result in what feels like an emotional roller coaster ride. Undoubtedly, you and the people around you will experience a wide range of emotions – fear, sadness, grief, anger, frustration, resignation, etc., and these emotions are likely to change rapidly and contradict each other. This ‘roller coaster’ may confuse and even overwhelm you and those around you.

For many, the ride begins with the first diagnosis; for others it may not manifest until much later when the realization of lingering or post treatment symptoms occur. For some, it may be the fear and/or uncertainty of cancer recurrence.

Regardless of when you experience these emotional extremes, it is important to recognize them as valid and to understand that they may interfere with your ability to function in your daily life- at work and at play- and even hinder your ability to tolerate your cancer treatment. Emotions play an integral part of our daily lives and our ability (or inability) to function at our best. Even our best efforts may find us unable to ‘shut down our mind’ and let our bodies get the rest that is critical to peak performance and optimal health.

Sometimes, a cancer diagnosis can also worsen pre-existing emotional problems or trigger memories to traumatic experiences from the past.

No two people handle stress in identical ways, yet there are some general guidelines that may help us all find some relief. Some suggestions to find relief are outlined in this link and briefly summarized below:

For most, the roller coaster will not significantly impact your ability to function and will pass as you become accustomed to your new ‘normal.’ Giving yourself permission to work through the emotions you experience will help your inner self to heal and regain your sense of self. However, for some, it might be time to reach out. If you experience emotions that ‘paralyze’ you in your daily living, if you experience feelings of overwhelming helplessness or hopelessness, or if you entertain thoughts of hurting yourself or others you need to reach out and ask for help. Talk to your physician, your loved ones, your clergyman; share with them what you are experiencing. Pick up the phone and call your local emergency number (in USA: call 911 or call/chat with the National Suicide Prevention Lifeline at 1-800-273-8255). Know that there are people out there who are standing by, willing and wanting to help you through this time.