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
Hospitals, Admissions and Experiences. Sharing the realities of hospitalisation. Actionable insights, ideas and tips.
The realities of giving and receiving care,
Poems I’ve written about caregiving
Asking for help and support, including a literal example
Directory of the Authors | Writers | Publications included.
Chris B at Chris B Writes
Patty Bee at Second Drafts
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 Pen at Betwixt & Between Proxy
Sue Fagalde Lick at Can I Do It Alone?
Wendy Frew at Care-Full
Karen Hargrave and Emma Gore-Lloyd at #ThereForME
Lauren Klinger at Learn From My Mistakes
Kelly at The Disabled Ginger
Kerri at The Other Parenthood
Tina at Dad Lives With Me
Cindy Martindale at Smarter Caring, Smarter Living
Dr Rachel Molloy at Time to Care
Mel Schlessinger at Loss To Living
Karen Lutfey Spencer, PhD at I’m Not Gaslighting You
Kira Stoops Imperfect Working Order
Janice Walton at Aging Well Newsletter
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
Sharing the realities of hospitalisation. Actionable insights, ideas and 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, Patty Bee. 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 for and caring for someone in an ER, hospital, or care facility.
I was relieved to read in the article’s comments that Patty’s family have experienced good, caring facilities and hospitals as well as these terrible situations.
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 Broadwaybabyto
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 Broadwaybabyto
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 Broadwaybabyto
Who can you call from the hospital at midnight? Finding the elusive emergency contact. By Sue Fagalde Lick
You're not as alone as you think you are. Post about emergency contacts yields results. By Sue Fagalde Lick
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.
Carers UK: A guide with tips, advice and support for unpaid carers
Are you caring for someone but unsure of your rights and what support you’re entitled to? Our guide explains the different benefits and support available step by step. Looking after someone also offers many practical ideas to help make life easier when taking on caring responsibilities.
Taking on a caring role:
US Specific:
Caregiving 101. It Helps To Be Prepared. By Janice Walton . Publication: Ageing Well
7. Starting the discussions and to manage someone else’s affairs
Eldercare
Personal reflection: ‘Home-aids & Starting the Care Discussion’. You can’t un-see risks, once your lens is turned. by Victoria. The realities of introducing grab rails and ‘the talk’.
Resource/Tools: ‘Home-aids’ What’s worked for us. Food for thought, not a promotion. By Victoria
The Eldercare Discussion. Connection and Conversation. Questions and Resources By Victoria
Having “The Talk” Without Blowing It Up (What Actually Works) How to begin conversations about help, change, or decline By Cindy Martindale. A great article about how to have the conversation, navigating your own thoughts and script suggestions.
Persuasion - not pride and prejudice It’s about talking with our parents, not telling them what to do By Wendy Frew
Caring for Parents: Being One Step Ahead. Thoughts and tips on practical ways to be prepared for parental decline By Siobhan Calthrop I really appreciate the way Siobhan compassionately lays out potential scenarios and empathetically shares her ideas, insights and words of wisdom.
My firsthand experience using ‘5 Wishes’ to talk about end of life Complete with how-to screenshots of 2 online tools By Karen Lutfey Spencer PhD A personal experience of how one family used the ‘5 wishes’. A useful walkthrough with links and screenshots.
Starting to manage someone else’s affairs
This is a UK focused video by Carers UK
8. The realities of giving and receiving care
a. 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.
Poem: ‘The ‘We’ of Cancer What I do to navigate both of us through anxiety and uncertainty.
b. The realities of caregiving
Less Than, A Caregiver’s Poem… And Why Assessments Piss Me Off By Chris B. Writes. Chris, Melanie and Bray Bray share their beautiful energy and light via Chris’ poems, interviews and articles. Everyday realities with a glass half full spirit (no toxic positivity). This article sheds light on assessments for Bray Bray’s care.
Essentially, I need to evaluate Bray Bray’s cognitive, communicative, and social abilities on a scale of 0 (never), 1 (sometimes), and 2 (always).
And listen, I get it. But that doesn’t mean that every 0 I checked off didn’t feel like another gut punch to my core.
Never Off Duty: The Caregiver’s Struggle with Hypervigilance by The Weight of Caregiving
“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 The Weight of Caregiving
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 Dad Lives with Me
“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 Emma Gore-Lloyd, Karen Hargrave 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 Siobhan Calthrop. “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.”
c. Asking for help and support
Learning to ask for help Our “awkward, brave & kind” email and the response we received By Sarah Coomber I love this article from Sarah because she shares the email she sent out to friends asking for help and how they used a Google schedule to coordinate. Practical, word-for-word advice. Thanks, Sarah!!
How to Shatter Barriers Blocking Caregivers From Getting Help. And five ways to begin.. By Cindy Martindale. (US focus) Cindy shares some practical tips for caregivers, useful reframes to rethink asking for help and list of resources.
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 Kerri
Consultations with doctors
How to close patient-doctor disconnects by Victoria (UK)
In this article, Dr Rachel Molloy (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 Lauren Klinger 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.”
Kira Stoops (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)
Kira Stoops 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 Kerri (US).
10. Navigating access to care support in the UK
Here in the UK, I think there’s a mainstream assumption that, with the NHS (free at the point of clinical need), care is readily available and accessible for everyone. It’s not.
The tip I give to carers in the UK - the best recommendations for quality care homes, palliative/end of life care are Hospice UK, local Maggies centres (the cancer charity) and local Macmillan nurses. The experts are those who interact with the very sick. A telephone call can reveal volumes of insights quickly.
“Your guide to hospice and end of life care” Hospice UK and their care finder
“Find Cancer Support” Maggies centres. I’ve asked for their advice for hospices and end-of-life unrelated to cancer. They have the experience and the experts including therapists and counsellors.
Macmillan Cancer Support. End of life information. Palliative care and cancer
11. Navigating Access to care support in the US.
Access to medical treatment
I recommend reading this article by Zed Zha, MD 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, Medical bills advice, enablers and navigating life around caregiving.
Denise Brown 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.
Anna De La Cruz : Respite Resources 1.28.25. Care Policy, Resources, and Fun Distractions
The Staggering Costs of Elder Care in America. My Experience with Medicaid, and Threats our Safety Net faces By Anna De La Cruz shares her Medicaid insights and tips.
A Business Insider article by Anna De La Cruz My mother prepared for retirement, but a dementia diagnosis wiped out her savings. I had to scramble to figure out her care.
You have a 401k - but are you (and your parents) really planning for elder care scenarios?
I shared how my mom’s diagnosis wiped out her savings in my latest article in Business Insider.
What costs $209.50 per day and also is terrible? The answer is: coinsurance for skilled nursing when you have Medicare. By Lauren Klinger. 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 Kerri
How I Save Money On Medical Bills Life is more expensive for everyone, and getting worse - here’s what I do. By Taylor Coffman
Your Health Insurance 101 Resource Guide Terminology we should have been taught in high school. By Taylor Coffman
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 Mel Schlesinger (a guest article on Crow's Feet: Life As We Age a publication by Nancy Peckenham)
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.
12 Navigating Access to care support in Australia.
Wendy Frew (who writes Care-Full) is based in Australia and has written several very informative articles about finding an aged care home for her mum. I kind of wish Wendy could decipher the UK system in the same way she’s written these articles!
A lawyer, a real estate agent and a journalist walk into a bar ...Why you sometimes need professional help when caring for your parents
‘Don’t be taken in by the grand piano’: first impressions of an aged care home No aged care home is perfect; what matters is the level of care your parents receive
The horror! The horror! Paying for residential aged care in Australia How hard can it be to work out if you can afford a room in aged care? Turns out, it’s really, really hard!
13. Dispelling myths, Challenging Societal ‘Norms’, Prejudice.
Thank you Broadwaybabyto 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.
14. 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 Rebecca Calles Rijsdijk ‘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!
15. Tough decisions and essential documents
In this article, Anna Du Pen 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 Donna Chandler
Thanks to Sarah Coomber 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. Janice Walton has shared her heart-wrenching experience: The Toughest Decision I've Ever Made.
Dementia-Specific Health Care Directives
Anna Du Pen 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.
16. Support Organisations
Useful links for advice, info and ideas. Carers organisation, discussion forums, news, everyday support
Please ‘❤️’ LIKE this article & consider subscribing!
Above all, please share this to help any others we may need it.
Carer Mentor by Victoria is free to read. If you have the means and would like to support the publication, I welcome monthly (£6) and annual (£50) subscriptions. Thank you for your ongoing support.
Please share a link to any articles about giving or receiving care. This Anthology will grow.
What a fantastic collection!! There is so much here!!
This is so brilliantly comprehensive!! What a wonderful and helpful collection of information!