Giving and Receiving Care Anthology
Learning from each other's Personal Experiences.
Hello, Dear Reader! Welcome to our new Carer Mentor community members!
I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?
Four anthologies comprise Carer Mentor articles and articles from MANY other writers/curators. You can read the Introduction to the iCARE Stack here.
This Anthology is dedicated to sharing the challenges surrounding the actions of giving or receiving care. It is a dynamic and growing resource. Please bookmark this article. I’d like it to be a reliable go-to reference source so you can avoid searching, saving or scrolling.
Feel free to recommend an article by sharing its URL in the comments. Thank you!
Anthology Table of Contents
Caregiving Hacks / Tips including home aids and safety alert devices
The realities of giving and receiving care, including Carer Mentor poems
Our Truth & Reality: Dispelling myths, Challenging Societal ‘Norms’, Prejudice.
Directory of the Authors | Writers | Publications included.
Denise Brown at Caregiving Reflections
Siobhan Calthrop at A Sandwiched Life
Donna Chandler at If I Get Dementia: Empowering You As A Caregiver
Sarah Coomber at Sandwich Season
Allison David at The Weight of Caregiving
Anna De La Cruz at GenXandwich
Janine De Tillio Cammarata at the Pause Place
Anna Du Penn at
Sue Fagalde Lick at Can I Do It Alone?
Karen Hargrave and Emma Gore-Lloyd at #ThereForME
Lauren Klinger at Learn From My Mistakes
Kelly at The Disabled Ginger
Kerri at
Tina at Dad Lives With Me
Dr Rachel Molloy
Kira Stoops
Janice Walton at
1. First Aid Advice
British Red Cross. Learn first aid. Learn the key first aid skills to use in an emergency
A minute can make a difference. Only 4 in 10 people in the UK would feel confident helping someone in a first aid emergency - Opinium, July 2023, nationally representative 2,000 UK adults.
First aid videos: learn five skills in five minutes
Take five minutes to learn five basic skills with our first aid videos
2. Caregiving Hacks / Tips
3. Hospitals, Admissions and Experiences
UNITED KINGDOM
'Hospitals: a Carer's mantra. Why?' By Actionable insights and Ideas/tips.
The first questions about hospitals. ‘When the going gets tough, you’re not alone.’ By Victoria, Carer Mentor.
You’re not alone, you have rights to Access social care. I highlight a charity that works with anyone in the UK who needs legal support. You don’t know what you don’t know—call or use the AccessAva app. 'We're only human. Legal support to help enforce your rights under The Care Act.'
UNITED STATES
Thank you,
. I really feel for you, and I’m also impressed by how you’ve shared your experience so clearly, without raging. For Readers: these are harrowing but very real accounts of hospitalisation and post-hospital rehab.This resonates: ‘I learned the yin and yang of asking questions in a hospital like this: push too hard and risk being branded a problem, stay quiet and risk missing something vital or life-threatening.’
It’s a high-wire act of stress and hypervigilance when you’re advocating and caring for someone within an ER, hospital or care facility.
I’m glad I read the comments within the articles to learn that Patty’s family has experienced good, caring facilities and hospitals.
Broken Bones, A Broken System: 40 Days of Saving Dad. Helicopter landings, shackled prisoners, chaos, cruelty, and the indifference behind the myth of compassionate care in the US hospital system
Where the Caring Ends The first 24 hours in a ritzy New York suburb’s House of Horrors nursing and rehab home
Tips for Surviving a Hospital Trip When Chronically Ill. When you're disabled - the decision of whether or not to go to the hospital is incredibly complex. When you have no choice but to go - there are ways to make it easier. By
How to Stay Covid Safe When in Hospital. A guide to navigating the risk of hospital acquired Covid - as well as how to manage overall risk of nosocomial infections and hospital derived complications. By
How to be an Effective Advocate for a Disabled Patient. Disabled patients are rightfully terrified of being hospitalized. We are stripped of our agency and control in a hospital environment. Having an effective advocate can vastly improve the experience. By
Who can you call from the hospital at midnight? Finding the elusive emergency contact. By
You're not as alone as you think you are. Post about emergency contacts yields results. By
4. Medications - getting the names and what they’re used for.
Carers UK Highlights this website: “If you want to know more about a particular medication and its side effects, it's best to avoid doing a random search online which may throw up inaccurate, out-of-date, disturbing or misleading guidance. The NHS site has an A-Z directory where you can look up a particular medication and find out reliable information about its side effects: A-Z of medicines.
Online directories of medications
Electronic Medicines Compendium (UK and EU). 'The electronic medicines compendium (emc) contains up to date, easily accessible information about medicines licensed for use in the UK. emc has more than 14,000 documents, all of which have been checked and approved by either the UK or European government agencies which license medicines. These agencies are the UK Medicines and Healthcare Products Regulatory Agency (MHRA) and the European Medicines Agency (EMA).'
Drug Product Database online query(By Health Canada). Search the Drug Product Database (DPD) to find drugs authorized for sale by Health Canada.
US Food and Drug Administration Drugs@FDA: FDA-Approved Drugs. Drugs@FDA includes information about drugs, including biological products, approvedfor human use in the United States (see FAQ), but does notinclude information about FDA-approved products regulated by the Center for Biologics Evaluation and Research(for example, vaccines, allergenic products, blood and blood products, plasma derivatives, cellular and gene therapy products).FDA Vaccines, Blood and Biologics
Drugs.com(US). You can search for a drug, a condition. There's a useful 'Pill identifier', Drug interactions checker and Drug side effects search option.
Australian Register of Therapeutic Goods(By the Australian Government. Ministry of Health and Aged Care. Therapeutic Goods Administration (TGA)). Search the ARTG by name, ID or sponsor. Search results include product name and formulation details, sponsor (company) and manufacturer details, Consumer Medicines Information (CMI) and Product Information (PI). Not all CMI and PI documents are available.
New Zealand Universal list of medicines(By the New Zealand Ministry of Health) 'The New Zealand Universal List of Medicines is the standard source of commonly-used information about medicines in New Zealand. It is the primary naming and coding database for medicines in the NZ health sector, and is used in most medical and pharmacy software.'
5. Organising, Monitoring, Tracking
A Caregiver Organiser in How to Reduce Stress During Caregiving. Journaling to Track and Organize by Janine De Tillio Cammarata.
Janine’s shared some prompts for journaling and generously shared an excel template of how she has tracked information. ‘This excel file is generic so you can input medications/doctors/hospital visits for yourself or anyone you’re caring for. Again, it’s what works for me’
There is no right or wrong way to track, monitor medications, appointments etc. It IS IMPORTANT to track things. Here’s a list of information points we track:
Day, date, purpose of visit/consultation, doctor/medic’s name, questions going into the consult, potential outcomes/actions/tests, medications (brand name, the in brackets drug name), dosage (milligrams), formulation (patch, tablet, capsule, sublingual, liquid)
Date of next appointment and follow-up checks
Who will receive copies of letters / communications (so far there has only been a few letters that have been 100% correct).
Summary of key information points, and any changes to current medications and tests with a view to sharing this with the other doctors.
6. On the Cusp of Caregiving
Checkpoint: 'Are you a Carer?' Many people don't consider themselves to be a Carer until a Crisis happens. Here are some useful UK definitions, facts, figures, and signposting to support you. November 11 2023.
US Specific:
Caregiving 101. It Helps To Be Prepared. By
. Publication: Ageing Well
7. Starting the discussions
Eldercare
Home-aids and Starting the Care Discussion By
The Eldercare Discussion. Connection and Conversation. Questions and Resources By
- I really appreciate the way Siobhan compassionately lays out potential scenarios and empathetically shares her ideas, insights and words of wisdom.
8. The realities of giving and receiving care
Carer Mentor Poems
In many situations, I’ve found it easier to express thoughts and feelings via poems.
‘Poem: ‘Head-Heart-Gut Aligned’. Then the decision clicks, and your ‘Why’ makes sense.
Poem: ‘The Eldercare Rollercoaster’ The unpredictable emotional ride-along when your loved one’s health has an Increased accelerated decline.
Poem: ‘If I could.’ A poem about translating Carer needs
Poem: ‘Friends, I see you!’ I wish you restorative sleep, moments of joy and peaceful calm.
Poem: ‘We don’t like the Hero-ing.’ For carers empathy and listening are more powerful gifts of support than suggesting solutions- no matter how well-intentioned they may be.
The realities of caregiving
Never Off Duty: The Caregiver’s Struggle with Hypervigilance by
“Caregiving is often described as an act of love, a responsibility that comes with deep emotional rewards. But for many caregivers, particularly those providing care for an aging parent, it becomes something else entirely. It becomes a constant state of alertness, a life lived in anticipation of the next call, the next crisis, the next moment when everything suddenly shifts and requires their full attention.” - Allison
The Scene That Stopped Me Cold: Why We Need to Take Caregiver Collapse Seriously by
When a caregiver reaches their breaking point, what they need isn’t a reminder to “rest” or “make time for themselves.” They need actual relief: respite care, flexible work policies, financial support, and accessible mental health services.
Caregiving is love, yes—but it’s also labor. And until we treat it that way, we’ll keep seeing stories like this one play out on TV and in real life.
Dad Doesn’t Want to Move, But I Can’t Keep Up Category: Living Situation by
“Caregiving for your elderly loved one long distance was fine until it wasn’t. Maybe Dad lives five miles away or 5,000, but you managed. It wasn’t always easy or convenient. Sometimes you felt guilty for not doing more. Maybe you had help, but that help is no longer available. Or maybe your responsibilities at home have increased, and you’re no longer as available to go to Dad as you once were.” - Tina
Thank you
, for your advocacy of ME/CFS. This post was heart wrenching and illuminating (please forgive that pun). There is SO much more we all need to learn about ME and that includes how to be better advocates/allies. As a caregiver, it was especially hard to read how Galen could not talk to James, and that this, in itself was an act of love. The Dark and Silent Abyss.How do you care for someone when light and sound cause pain?
This week’s post comes from Galen Warden, whose adult son, James, has Very Severe ME. Like many with ME, he suffers from hypersensitivity to light and sound, adding to the challenges he and his mother face navigating his care.
Lessons from a Fall. What I learnt about caring for my mother after her fall By
. “Those of you reading this who have parents that you care for, either now or in the future, will very likely have to deal with a fall at some point. The more prepared, the better.”
9. Communication challenges
Communicating with Family and Friends
This offers some essential advice about setting the right tone and communicating with family members. Unlocking Support: Effective Ways to Approach Family Members About Your Parent's Care. Getting everyone on the same page is an important first step in eldercare by
Consultations with doctors
How to close patient-doctor disconnects by
(UK)In this article,
(UK) offers her insights from the perspective of both a doctor and a carer. An insightful dual perspective and meaningful learnings for us all. Listening, not just hearing. How a graduation speech made me think about listening in healthcare, from both sides of the consultation room.Making the most of attending a doctor’s appointment Tips for going along to appointments without taking over. By
This resonated loudly, thanks, Lauren:“They were often less fun, with me trying to control the situation, to get us there on time, to get the doctor to answer his questions, to get my dad to answer the doctor’s questions honestly. If I interjected and corrected an answer (“You haven’t walked to the pool in months, dad;” “You do still sometimes drink Scotch, right?”), he would scowl at me. But if I managed to remember something important, like the name of his cardiologist or the date of his last urology appointment, he’d smile and tell me he was so glad I was there. I never knew exactly what response I was going to get, and it was maddening.”
- (US) has written three articles with actionable insights and scripts to support your consultations. Great advice! Thanks Kira!
Don't go to the doctor without this trick (Tip #1)
Appointments that used to stab my hope balloons now add extra helium. My doctors listen, we work together on forward strategies LIKE GROWN-UPS, and we make the most of whatever time we get.
I don’t roll out feeling like I might be cured. That’s overselling it. But I do leave feeling like there are options, ideas, and especially: empathy.
Don't go to the doctor without this trick (Tip #2)
In fact, good doctors encourage your input. Great ones trust your instincts (and gently challenge them). These are the ones we want to support and stay in business. With them, it’s easy: just say no. And done. This post isn’t for working with docs who get it.
This post is for when you have to find a way to say no to not-so-great doctors (rife in small towns and underserved markets) without damaging consequences. This requires subtlety, diplomacy, and truth-slanting, none of which come remotely naturally to me.
Don't go to the doctor without this trick (Tip #3)
offers some great tips on where and how to find great doctors. It’s great to read ME/CFS-focused support AND it’s also easy to see how to extrapolate her insights to other chronic health conditions and illnesses. I check in with my online carer groups for ideas too. It’s likely you’ll feel frustrated when you read this article, but it is an important read to prime yourself for any interaction with medics. Thanks for sharing this, Kerri. Doctor as ally or adversary? Lessons learned about how to communicate with your elderly parent's medical care team by
(US).
10. Navigating Access to care support in the US.
Access to medical treatment
I recommend reading this article by
sharing rage and frustration about trying to obtain the right medical drug care for her very young patient How To Save A Life. hint: it's NOT by following the rules. Dr Zed Zha helps us understand ‘Prior Authorisation’—how the process of access to drugs is regulated and implemented in the USA.Pharmaceutical companies develop and produce therapies, ‘managed care and insurance companies’ regulate access to those therapies. It’s complex, convoluted and a confounding part of the USA Health system
Insurance / access to care support, enablers and navigating life around caregiving.
- as part of her Caregiving Years Training Academy shares her thoughts via a video, about Navigating The 19 Caregiving Systems. Once you see and hear this, many things click into place. Caregivers are the buffer, translator, communicator, explainer, and so much more. They are the go-between, advocate, champion, and protector of our loved ones. The systems are different but mirrored here in the UK.
- : Respite Resources 1.28.25. Care Policy, Resources, and Fun Distractions
- shares her Medicaid insights and tips.
- . Lauren breaks down the numbers and the real deal about navigating Medicaid and Medicare. Thanks Lauren
The long term care insurance puzzle And how to identify the pitfalls before you buy by
I shared her article with a few friends in our network: Thanks for sharing this Kerri my mind boggles at this. I’d be interested to hear additional thoughts from Jodi Sh. Doff, Janice Walton, Anna De La Cruz and see if Kira Stoops or Taylor Coffman had more advice.
FYI Taylor wrote some 101 guidance (see below) on health insurance, and Kira has some great tips - but these are not focused on eldercare.
Taylor wrote: Ugh I’m sorry you’re dealing with this. This is the exact kind of thing the Consumer Protection Bureau was created to support. You might still consider contact them even though Trump really gutted its strength. Additionally try persius.org - they tout a lot of support on claims that are facing roadblocks. I hate all this!
Janice Wrote: Hi Victoria, thank you so much for sharing this article. Kerri, I’m so very sorry that you are forced to go through this. My hope is that everyone will read your article and learn.
My husband and I talked about long term care insurance but instead chose to maintain a separate account for such emergencies years ago. After I could no longer manage him because of the dementia, he was in a memory care facility for five months before he died of COVID - so that was out of pocket, but doable.
I got a large tax refund the following year for the cost of his stay there. Just a thought! Would getting a lawyer be of any help or is there a TV station that has a consumer help line? In other words, are there any bigger guns that could support your effort. It really is unconscionable.
Kira wrote: I sure wish I did have some advice. Insurance of all types is such a travesty. All I’ve got: fight the initial determination. Often systems put up an initial denial as a roadblock but there are ways to drive around it if you push. Second, at this point in history it may be worthwhile to consider out of the box solutions—moving to another country, starting a “grown up daycare” where one carer works on several adults at a time, moving your own employment to home-based to keep an eye on Mom…the systems just aren’t built for normal reality. Unfortunately. Hate it for you, and for all of us.
Your Health Insurance 101 Resource Guide Terminology we should have been taught in high school. By
So for the folks who are a bit unclear, here is a basic explainer of American Health Insurance terms. Open enrollment is coming soon and it’s important to understand how it all works to make the best decision for your life.
What senior health benefits / medical insurance would an insurance agent choose in the US? Here’s one expert’s decisions and insights. Thank you, Mel! Read This Before Open Enrollment 2025. Critical Information for Every Medicare Beneficiary By
(a guest article on a publication by )Until this open enrollment, I was an insurance agent specializing in Medicare and senior health benefits. I have 40 years of experience dealing with health insurance products (including Medicare) and was the 2011–2012 president of the National Association of Insurance and Benefit Professionals (formerly National Association of Health Underwriters).
As we approached this year’s open enrollment, I decided to retire from my career. I ended my career primarily because my wife has terminal cancer and recently entered hospice. That, combined with the many changes to Medicare Advantage Plans, made providing the level of service that I felt my clients deserved impossible.
11. Our Truth & Reality: Dispelling myths, Challenging Societal ‘Norms’, Prejudice.
Thank you
for Standing the Ground, making others aware and advocating for our needs. ‘A Plea to Maskless Healthcare Workers from Vulnerable Patients. If you see a mask - wear a mask.Better yet - wear a mask all the time and show us you understand that we're still IN a pandemic. We are depending on you to keep us safe - please don't betray that.’
Madelleine Müller Thank you for this article. It’s an essential testimony to the impact of ‘Toxic Positivity’ in Western culture, the negation of suffering as part of the Human experience (whether we like it or not!) and the prejudices that persist in our ableist society. An important read! Challenging wellness culture’s stigma towards chronic illness .
Wellness culture teaches us that being sick means we are not taking well enough care of ourselves. This thought perpetuates stigma about chronic illness and it causes internalised shame.
12. Dissonance in value: care, productivity and emotions
Maybe I should just leave care and become a bike courier instead is what my salary said to me the other day By
‘Unconscionable but true, Rebecca compares her wage versus a ‘bike courier’, and exposes the emotional labour she endures.Tuesday 28th October, this was in the news: UK turns to helper robots as social care crisis deepens An article in The Business Standard and reported by the BBC News. Choosing not to spend my energy commenting on this right now!
13. Starting to manage someone else’s affairs
This is a UK focused video by Carers UK
14. Tough decisions and essential documents
In this article,
highlights the tragic situation of not having an advocate for you and your wishes, when you are mentally incapacitated. An important read and reminder to prepare ourselves and our loved ones. Cases in the Betwixt: No Family. What Becomes of Them?This is a useful article for anyone in the US, defining key documents and offering succinct advice Donna has put together a great summary. A Legal Roadmap for Dementia Families The Documents We All Wish We’d Signed Sooner by
Thanks to
and her Dad, Jim Coomber for this article. Hanging up the car keys: A Dad/daughter conversation. There is a lot of grace in these lines! Respect.Sometimes, we must make hard decisions for the safety and benefit of our loved ones, whether we like it or not.
has shared her heart-wrenching experience: The Toughest Decision I've Ever Made.Dementia-Specific Health Care Directives
- has created a website specifically designed to support caregivers, family, and friends of someone suffering from Alzheimer’s or another Dementia. She offers free downloadable tools and opportunities to seek her advice (Free 30-minute consultation then $80/hr).
Anna trained as an oncology nurse practitioner and spent much of her 35 year career specializing in palliative care which was not much help when she became the primary caregiver for the love of her life who developed, persevered, and died from Alzheimer’s Disease. She writes about the unspeakable pain of ambiguous loss in general, and the struggle to honor her duty to act as durable power of attorney for health care while desperately not wanting to lose her soulmate, complicated by the multiple failures of the health care system (during COVID) to provide a compassionate end of life experience for her husband.
15. Support Organisations
Useful links for advice, info and ideas. Carers organisation, discussion forums, news, everyday support
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This is so brilliantly comprehensive!! What a wonderful and helpful collection of information!
Thank you for including Learn From My Mistakes! So many great resources here.