Tag Archive for: patient

Patient and Care Partner Discuss Value in MPN Care

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Patient and Care Partner Discuss Value in MPN Care from Patient Empowerment Network on Vimeo.

 MPN Empowerment Leads Jeff and Summer talk about how they define value in Summer’s care. For instance, one important thing that brings value to them is how accessible their healthcare team is. Watch now to hear more about what they value on Summer’s journey with myelofibrosis.



Alright Summer, I’m just looking at the bill for your last doctor’s appointment.




Do you think we get good value for our money? Oh. Hi, I’m Jeff.


HI, I’m Summer.


And we’re your Patient Empowerment Network Network Leads for myelofibrosis. And we’re here to talk to you today about how do you define value for your healthcare dollar. What do you think is important for healthcare dollars, Summer?


Well, really important is that the doctor and all the medical staff really listen to the patient and really aware of how the patient is doing everything. Also, that they need to explain because my doctor will come up with little charts with funny little numbers on them and something about blasts which doesn’t have anything to do with blasting like having fun. So, she’ll come out with that and explain all that.

Also, to let you know what’s going on with your medication. Where I get my medication is Walgreens Specialty Pharmacy and they’re very good. They always call me about any changes. They let me know when the order’s in. They always offer to delivery it, but I don’t think that’s a very good idea so I do pick it up.

Also, that they see the patient as an individual and respect their individuality. For example, I’m big on mind-body connection. I think there’s a huge connection doing exercise daily, eating pretty good, but I do like my sweet treats too. I don’t give that up. And Zelda, she just likes to lay around, and that’s what she enjoys. Don’t you, baby?


Well, a couple of things that I think are important for your value for your healthcare dollar, one is accessibility. Is your doctor easily accessible? And with the UCSD system that we’re on, we have great accessibility. They have a wonderful patient portal on the web that you can go and find out all of your results. I don’t have to keep a book of past blood test results because it’s all on the web and I can see it. And if we want to get in touch with them, there’s a way to send them a message and  they get in touch with us within the day for sure. And we can make an appointment that way. It’s really, really a good system. So, accessibility is one thing that’s really important.

Another thing is availability of specialists. Myelofibrosis is a very, very rare and unusual disease and there aren’t a lot of specialists in the whole country. We’re truly blessed to have Dr. Tanaka who is a researcher and a specialist is myelofibrosis and myeloid diseases be on call when Summer showed up at the hospital with her first incidence that led to this diagnosis. And UCSD has a number of doctors that are specialists, so we are fortunate. But you need to find a healthcare system where you have enough specialists.

And the final thing that I can think of is, you need to be your own advocate. The doctor is doing the best they can, he or she can, to solve your problem and to work within what they think is normal standard, normal practice, but they’re not mind readers. They can’t understand what is concerning you. You need to speak up, ask questions, and let the doctor know your concerns so they can address them. That’s the patient’s job as opposed to the healthcare system or the doctor’s job. Speak up.

So those are some of the ways we define value in our healthcare ‘Til next time, I’m Jeff.


Summer. Zelda.

Patient Advocacy: How To Increase Twitter Engagement

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While Twitter might not be as popular as other social networks such as Facebook, Instagram, or YouTube, it nevertheless has a large following among healthcare professionals and patient communities. Twitter has the potential to be a powerful tool that keeps you informed, encourages collaboration, amplifies advocacy activity, and raises awareness of your cause.

When Twitter first launched in 2006, gaining traffic from it was easy. Since there wasn’t much competition among users and the concept of tweets was still relatively new, people were curious to click on the links users tweeted.

Today, gaining followers and increasing engagement is harder. But there are ways once you understand how Twitter’s algorithm works. In this article, we’ll cover some tips and techniques you can use to improve your engagement rate and make a bigger impact with your advocacy campaigns on the platform.

How Twitter’s Algorithm Works Today


Since 2018, Twitter’s main timeline is no longer chronological. This means an older tweet may appear alongside a tweet from two minutes ago and one from ten minutes ago. Twitter’s algorithm sorts the tweets you see based on your interests, which is why Twitter may sometimes show you a tweet from someone you don’t follow.

What this means for you: Because Twitter shows you content it thinks will be of interest to users, you should check that the people you follow and those who follow you share the same interests.

2. Timeliness

Twitter’s algorithm is heavily weighted by time so timing is one of the most crucial factors that influence how well your Tweet performs and how many people engage with your content.

What this means for you:  You need to post at a time when people are active online for a better chance of visibility. Based on research by social listening platform Sprout Social the best times to post on Twitter are around mid-mornings and mostly on weekdays (Central Time). This will of course vary depending on location. Therefore, it is best to experiment with your timings to discover what works best for you. By tweeting at various times, you can determine when your audience is most active on Twitter and use this information to identify the optimal  times to increase visiblity for your tweets.

3. Credibility

Twitter’s algorithm favors credible accounts. Even if someone doesn’t read a single tweet, they’ll see your bio. They will decide quickly whether or not to follow you when they do.

What this means for you:  In order to make your profile look credible be sure to fill out every detail, such as your profile photo, bio, location, credentials, and so on. Your Twitter profile should be regarded as an important part of your professional advocacy activities. When people encounter your online profile, what will be their first impression of you? What might motivate them to follow you?   Do you need a more professional picture to represent yourself online? Do you have an image for your header? As an example, you could use a picture of yourself holding a sign with a strong message. Maybe you’re working on a campaign or a project right now. In that case, why not include an image that represents this in the header.

How To Increase Your Twitter Engagement

We’ve looked at Twitter’s algorithmic elements, now let’s see how we can take advantage of this information to boost engagement on the platform.

What is Twitter engagement?

Simply put Twitter engagement is when someone engages with the content that you post. It includes:

  • Mentions of your Twitter handle
  • Comments on your Tweets
  • Likes of your tweets
  • Retweets of your tweets
  • Clicks on links you included in your tweets

Furthermore, Twitter followers and activity are positively correlated. A Twitter user who is active will have more followers, increasing the likelihood that they will be engaged.

What is a good engagement rate on Twitter?

Twitter’s average (high) engagement rate is currently 0.33 percent, significantly lower than that of Facebook, which stands at around 1 percent.

Engaging content is something people will see, like and retweet.  Early engagement is especially important. Tweets have a half-life of around 18-24 minutes, meaning that half of the engagement will be received in a little under half an hour. If your tweet doesn’t get much engagement within the first couple of hours, it won’t be shown to more people.

The following pointers will help you get the most out of your tweets, and if you use them consistently, you should see a boost in engagement.

Respond to engagement

The simplest way to get more engagement is to get in the habit of monitoring your notifications tab and responding to each person who @mentions, comments and retweets you. If you’re having trouble getting people to engage with you, be the one to start the discussion. Reciprocity is a big reason why people want to follow and interact with you. To start a conversation, ask a question, reference other accounts in your tweets, repost others’ tweets utilizing the quote tweet tool to add your own thoughts, or create a poll. Polls are a Twitter feature with built-in engagement – and not utilized as much as they could be.

Include a Relevant Hashtag

Hashtags, like Instagram, are an important aspect of Twitter usage. Tweets with hashtags have a 100 percent increase in engagement, according to Twitter’s own findings.

Tip: Visit symplur.com to find relevant hashtags for your disease area. If you can’t find a hashtag related to your topic, you might consider creating your own. For more information on using hashtags strategically read Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

Take Part In Twitter Chats

Joining a Twitter chat is a fantastic way to meet new people and engage in conversation. People will come to know you if you attend a Twitter chat on a regular basis, and you’ll be able to swiftly create and grow your own network of supporters. Again, you can find a list of disease-specific chats at Symplur. A great place to start is by joining the Empowered Patient Chat  #PatientChat held every other Friday at 10:00 am Pacific / 1:00 pm Eastern.

Add Images To Tweets

You’ve surely heard this before, but it’s worth reiterating: images matter — a lot.  People connect more emotionally with images than text, and in an increasingly crowded digital landscape images can break through the online content clutter. Adding visual appeal to your tweet is a smart way to make your content stand out among a sea of tweets. Not only does adding an image increase the visibility of a tweet, but tweets with images also get more retweets and likes (according to Twitter, a whopping 313% more engagement.)

The type of visual assets you can create include images, videos, infographics, quotes, and GIFs. Take advantage of the fact that you may add up to 4 images to your tweets (all you have to do is click on the photo icon after you’ve added your first image, then add up to 3 more images) and build a carousel of images to draw the reader’s eye.

Tip: Stick to the same colors, typefaces, and layouts in all of your photographs to establish a strong visual identity.

Reshare your best content

Twitter is a fast-paced environment where messages are quickly buried. As mentioned already because a tweet’s shelf life is so brief, you’ll need to publish your best content on Twitter several times to boost visibility. To find your top-performing tweets, use Twitter’s built-in analytics tool (analyticstwitter.com). It’s likely that if this content did well once, it’ll do so again.

Tip: Change things up by adding a powerful graphic, highlighting a crucial statistic, or converting a statement into a question. Experiment with publishing at various times and on various days to see how this affects your engagement rate.

Ask people to share your content

A simple “Please Retweet” can increase the likelihood that people will reshare your content. Yes, it sounds simple, but it works!

As always, thanks for reading. I hope you learned something new today.

Claiming the Number One Spot

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Assimilation can sometimes take years to complete. Or, it can be a slow imperceptible change. It can happen and you may not be aware until after some time has passed. For others, assimilation can be a brutal quick mind-numbing takeover. What am I speaking of? It’s the mental and emotional takeover of being seen as a person with a name to a patient with a date of birth, social security number, and insurance card.

From the initial time you get your cancer diagnosis, you’re thrust into a complex healthcare system and suddenly you find yourself trying to maintain and keep your identity as a mother, father, sister, brother, son, or daughter, husband or wife. Soon, you’re running from doctor appointment to doctor appointment. Your sense of choice and control over your time and understanding your body is now unrecognizable to yourself. Eventually, you’re a patient. It’s scary how quickly your mindset changes and you find yourself feeling more like a victim. Understandable when you’re over your head all consumed in perhaps the battle for your life. Instead of assimilating, perhaps transitioning is a better term. It is difficult, but necessary, however, not to the degree you may think. Just because you are now ill, it doesn’t mean you have to just sit back and let the doctor make all the decisions and you just follow. You have to be an active participant in your care, every day, all the time! Traditionally we have always felt that doctors know everything and they will always do what’s in our best interest, all of the time. Not so! I had to remember when my husband was in treatment for myeloma, no two patients are the same, and no one doctor knows everything. There’s a reason it’s called “the practice of medicine.” It’s time to look at yourself not as a patient but as a person with a disease. You can still have control over your life and steer the ship.

This is a short fact sheet on self-empowerment. Refer to it over and over to remind yourself how to manage your treatment plan with your healthcare team. And, use it to expand your treatment team.


Anytime you are in your doctor’s office, you are the most important person in the room. It’s all about you. Make sure the focus is on you and that you are giving your treatment team everything about your health, even minor changes as they may be important. Ask about the treatment, how it has affected other people and how it can affect you. What are all of your options? And, also equally important, what is this going to cost?


Ask over and over until you understand. Whether it’s about your health or the cost of your treatment plan, you need to be in the driver’s seat. You need to be able to plan not just for next week but for the rest of your life. Don’t be afraid to ask and get answers. Be respectful of your doctor’s time. Perhaps call in and make your doctor aware of your need for a few extra minutes to go over your questions or concerns or ask if you can send these questions ahead of your appointment so they can be prepared. Be aware that the financial questions may be sent to a social worker or someone else. On your request ask that they identify that person. That way you know who to go to for that information in the future. Or, request a few  additional minutes to your appointment to have your concerns addressed. The point is, make sure you ask about all the concerns you may have regarding your treatment and its costs.

If you have problems asking questions there are people who can help you who can advocate on your behalf when you can’t. In addition to discovering or acquiring the skills you need to become an effective self-advocate, you need to be empowered to believe that your voice can and should be heard. Unfortunately, many older people, my mother was one of those, who are less educated or come from lower socioeconomic groups—those who are timid or shy by nature—may find it difficult to question someone they perceive as authority figures who control their destiny. They may fear asking “dumb” questions, or may not even know the questions to ask, or alienating their doctors by questioning them. And, trust is critical to any good doctor-patient relationship. Patients want to believe in their doctors. If you find yourself not getting the attention you need or answers to your questions, or you’re getting push back from the doctor, it may be time to look for another doctor. It won’t be easy, but not doing so can have a huge negative impact on the quality of your care. This is advocating for yourself and it’s so empowering!


The more you know about your cancer, the more you can participate in your treatment. There are many ways to research your illness. There are cancer-specific non-profits that offer a wealth of information and cancer-specific support programs.  You may have access to a medical library or don’t forget the wealth of information you can get from creditable websites online.

One of the most difficult areas of advocating for yourself may be regarding understanding the cost of your care and sharing with the doctor before it’s too late how you don’t know how or if you can afford the care that is necessary. Financial toxicity adds so much stress which interferes with your health outcomes. And, unfortunately, the COVID-19 pandemic has only made things worse. The sooner you bring this subject up with your healthcare team the better off you are going to be. Our society, unfortunately, judges people on how big their house is, what kind of car they drive, and whose name is on clothing labels. Look around, you can have all the money in the world, but cancer/illness is one of the great equalizers. Your goal is to get the best care you can. There are many resources available to help you do that. From healthcare to financial assistance to empowerment guidance. Just ask!

Growing Up (As a Patient)

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For people who find themselves on the receiving end of a diagnosis – a chronic condition, or cancer, or a rare disease – during childhood, the transition from “kid” to “adult” can include making transitions from pediatric-wing medical specialists to adult-medicine specialists for their particular condition.

This transition from child to adult can kick off while the young patient is still a minor, given that states can allow people under 18 (minors) to block access to their medical records once they reach 12 to 17 years of age – it varies state to state, with federal law (HIPAA) taking precedence if state law is silent on minors’ ability to block access to their records by their parents. A good overview on federal law side of this is in an article on VeryWellHealth, HIPAA Guide for Parents and Patients.

In this early transition-before-the-full-transition phase, a kid’s relationship with their parent(s) will be a core driver of whether a partnership between parent and child is central to that child’s care journey. Also, intellectual capacity of the kid/patient is a factor, one which will likely be well established prior to that kid reaching adolescence.

OK, that’s a basic scene-set for arriving at the “I’m 18, now what?” decision tree. As a freshly 18-year-old person, you won’t be expected to just shift immediately to a different set of clinical folks – you’ll get help from your pediatric clinical team in transitioning into a new care framework under adult medicine.

The Society for Adolescent Health and Medicine calls this transition phase “the purposeful, planned movement from adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems.” In an article in JAMA Pediatrics, the process is outlined this way:

  • Time the transition by opening discussions about what it will mean with both the patient and their family, starting around the time the patient turns 12
  • Get everyone on the care team involved: patient and parents, obviously, but also nursing, care coordinators, social workers, case managers, transportation services, everyone participating in the patient’s care
  • Parents: ask your kid’s pediatricians when they typically kick off the transition discussion, and ask other pediatricians about their transition process, too; work with your kid and the pediatric team on a goals list for the transition itself, and work that list as the transition proceeds
  • Patients: work with your parents and your clinical team on learning how to be a equipped, enabled, empowered patient – what resources do you need, what peer support communities would they recommend, how to figure out health insurance coverage, how to manage your care plan, along with who to ask for help in those areas

Often, turning 18 means heading off to college – even in a pandemic, for some – and finding out what resources are available in your college’s town or city will be a critical step in that transition. Work with your clinical team on identifying the right medical staff for your “college care team,” since relying on the student health center is a very your-mileage-may-vary exercise. I speak from long-ago experience, but the Washington Post says things haven’t changed much, and the pandemic has revealed all kinds of gaps there.

Be proactive – as a kid/patient, and as a parent – to ensure you prepare for this big transition, and move into adulthood with a plan for your ongoing medical needs in place. Live life to your fullest capability – it’s the only one we’ve got, so let’s live well, shall we?

Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key

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Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key from Patient Empowerment Network on Vimeo.

Charise Gleason, a nurse practitioner, provides insight as to why identifying chromosomal abnormalities is essential when it comes to targeted therapy as a treatment choice for myeloma.

Charise Gleason is a nurse practitioner specializing in myeloma and serves as the Advanced Practice Provider Chief at Winship Cancer Institute of Emory University. Learn more about Charise, here.

See More From INSIST! Myeloma

Related Programs:


Essential Tests & Imaging After a Myeloma Diagnosis

Lab Tests in Myeloma: Key Results to Monitor

Key Considerations When Choosing Myeloma Treatment: What’s Available?



So, testing for chromosome abnormalities or changes are important when it comes to targeted therapy.

And we used to think of this more in that relapse setting. But we also look at it upfront now, because it tells us more about the path of myeloma. And there are reasons to check throughout at relapse, again, to see if something’s changed. So, with targeted therapy, we can use the translocation (11;14), for instance.

Many patients have a translocation t(11;14). It’s not a high-risk feature. But we know on clinical trial we have a drug that we’re using called venetoclax that those patients can be very sensitive to.

And so, we’re looking at this not just in translocations but in sequencing for other abnormalities or gene mutations that can help guide us with these newer therapies. And you see that across all cancer types at this point. So, you can get very specific with a patient’s type of myeloma – that this drug is going to work better because you have this mutation.

So, we look at it upfront. It guides us for risk stratification: standard risk versus high risk. And then we look at it in that relapse setting. Do we have a drug or a clinical trial that this patient will respond better to because of those abnormalities?

When we’re risk stratifying, we know standard risk, medium risk, and high risk. Those are those translocations, those gene mutations, that we know about.

But newer testing, like sequencing, gives us a lot more mutations that we don’t even know what to do with them all yet.

We don’t necessarily have drugs for all of them, but it does help guide us down the road. So, right now some common are the translocations, but also deletion 17p, which we’ve known about for a while. But maybe you see a BRAF mutation, which you typically associate with other types of cancers, but we see that in myeloma as well.

So, it helps us look at is there a drug that our myeloma patient might benefit from because they have a BRAF mutation, for instance. 

Essential Imaging and Chromosome Tests after a Myeloma Diagnosis

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Essential Imaging & Chromosome Tests After a Myeloma Diagnosis from Patient Empowerment Network on Vimeo.

Charise Gleason, a nurse practitioner, explains why tests such as bone marrow biopsy, FISH test and full-body imaging are considered essential for patients after a myeloma diagnosis.

Charise Gleason is a nurse practitioner specializing in myeloma and serves as the Advanced Practice Provider Chief at Winship Cancer Institute of Emory University. Learn more about Charise, here.

See More From INSIST! Myeloma

Related Programs:

Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key

Lab Tests in Myeloma: Key Results to Monitor

Key Considerations When Choosing Myeloma Treatment: What’s Available?



The essential testing that a myeloma patient should undergo following a diagnosis is – obviously, you’ve had those diagnostic test labs, the 24-hour urine, some scans, but the specific things that we need are a bone marrow biopsy.

That includes cytogenetics and FISH, and we can talk a little bit more about that. You also want full-body imaging. We used to always use a skeletal survey, which was an X-ray of the long bones. But, really, the standard of care now is a whole-body scan.

So, depending on what your oncologist or your institution has, that would be a full-body CT scan, a PET-CT scan, or a full-body MRI. So, one of those tests is recommended. It’s not unusual if you have a PET. Like our institution, we use PET-CT. So, for a newly diagnosed patient, we’re also going to get an MRI of the spine for a further snapshot.

What we’re looking for with a full-body imaging is we want to make sure that there aren’t any lytic lesions.

So, with an X-ray, you have to have about 30 percent bone loss before it’s going to show up on an X-ray. So, those traditional X-rays that we used to use could actually miss an active lesion. So, in that diagnosis, we want to know that there is no active myeloma. And those other scans are going to be more specific to that.

So, the cytogenetics of a bone marrow biopsy are going to tell us more about the biology of the disease. So, cytogenetics actually grows out the pairs of cells. And so, that’s why that portion of the test can take a while to get back.

At our institution, it can take two to three weeks, because you’re actually growing out those cells to look at the chromosomes. And remember these are chromosomes, or genes, of the plasma cells. And so, we’re looking for those abnormalities that might be present. So, you think about it more for the biology of the disease.

When we’re looking at FISH, we’re also looking… That test shows a little bit different. It comes back quicker. It shows two different phases of cell changes.

And so, it will tell us about chromosomes as well. But do you have any additional chromosomes – so, that would make it a hyperdiploid narrow. It tells us if there’s a loss of a chromosome – so, you’re missing one, a hypodiploid. It also tells us about translocations – so, when you’ve had a piece of a chromosome change and go to another cell. And so, that, for instance, would be like that translocation t(11;14) or translocation t(4;14). So, it’s essential to have that testing to tell us about that, because it helps guide treatment. And as we talk more about targeted therapy, these things really can come into play.

How to Read and Understand Scientific Research #patientchat Highlights

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Last week, we hosted an Empowered #patientchat on how to read and understand scientific research. The #patientchat community came together for an engaging discussion and shared their best advice and tips.

Top Tweets and Advice

Understanding Scientific Research Is Critical

Science should be accessible to all

“The whole of science is nothing more than a refinement of everyday thinking”

Full Chat

Managing the Emotions of a Chronic Illness #patientchat Highlights

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Last week, we hosted an Empowered #patientchat on managing the emotions of a chronic illness. The #patientchat community came together for an engaging discussion and shared their best advice and tips.

Top Tweets and Advice

Step One: Acknowledgement

Emotions Aren’t “Negative” or “Positive”

“We all deserve the freedom to express feelings all the time”

Full Chat

8 Beliefs That Can Hold Caregivers Back (from reaching out for help)

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Family caregivers too often suffer from two very common things: overwhelm and isolation. Or, to it put another way, exhaustion and loneliness. So often, the nature of illness and trauma not only disrupts our normal ways of living, but also disrupts our connections with people who care about us. Caregivers who reach out for support gain the benefits of lessening their burdens and of feeling the warmth provided by people who care.

Too often, caregivers hold back from reaching out because of beliefs they have about doing so:

  •  Nobody else can do what I do for my loved one.
  •  My loved one won’t accept help from anyone but me.
  •  I’m too busy to even begin to think about doing anything more – even reaching out.
  •  The moment I start reaching out, our family will lose our privacy.
  •  I’m afraid of imposing on people.
  •  Reaching out shows weakness; doing it yourself shows strength.
  •  I’m afraid that nobody will come forward to help me.
  •  Since I’m able to handle things now, I’ll be able to continue to do so.

These, beliefs, while completely understandable and very common, are neither healthy for you as a caregiver or for your loved one. They get in the way of your resilience and your capacity to sustain yourself for however long your caregiving is required. Each week, I will be focusing in on one of these self-limiting beliefs and invite you to come along with me in exploring those that you are now willing to let go of and change into ones that help you not only survive, but thrive.

So let’s get started:

Nobody else can do what I do for my loved one

Think of the whole range of “things” you are currently doing. First think of the practical ones: dressing, managing and administering the meds, shopping, preparing, serving and cleaning up after meals, assisting with bathing and toileting, and so on. Now focus on the emotional and spiritual ones – showing love, being a trusted confidant, giving emotional support and comfort, etc.

Nobody else can do these things exactly how you’re doing them or would your loved one experience them in the same way if they were done by people other than you. No one else is so attuned to your loved one’s needs and preferences and, most likely, your loved one is most receptive to your way of doing these things. And, no one else would be as committed to your loved one’s comfort and be as vigilant as you are. This much is true.

But, the trap here is believing that, since no one else can do things the way you do, that no one else can do them or do them satisfactorily for you and your loved one.

Let’s take a look at some of those practical things that I listed above. Take one area for starters, e.g. grocery shopping. These days, it’s not like the days when our mothers used to look the butcher in the eye and tell him she wants a better cut of meat than the way he did it last week. Shopping simply means meal planning, list making and going out and getting the groceries – all very delegatable tasks. When you think about, I think you’ll agree that many if not most of the practical things can be done by others. Not necessarily with your intimate knowledge and way of doing things, but in their own ways. And, similarly, other people will bring their own and distinctly different ways of providing emotional and spiritual support as well.

Bottom line: Is this a belief you’ve been holding? If so, how does it serve you? How does it hinder you? How might you re-write that belief so that it serves you better? For example, “There are some things that other people can help with. I’m going to try this out with some simple things.” What practical step can you take to try out that new belief this very week? Let us know – by commenting on this blog. You’ll help yourself and other caregivers by doing so.