Giving and Receiving Care. An 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!
Carer Mentor Articles
The first questions about hospitals. ‘When the going gets tough, you’re not alone.’
'Hospitals: a Carer's mantra. Why?' Actionable insights and Ideas/tips.
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.'
The Eldercare Discussion. Connection and Conversation. Questions and Resources
Resource: 'Enabler Tools for a Carer's Journey' Part 1: The Ten books I recommend
Useful links for advice, info and ideas. Carers organisation, discussion forums, news, everyday support
Carer Mentor 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.
Anthology Table of Contents
Directory of the Authors | Writers | Publications included.
Denise Brown at Caregiving Reflections
Kelly at
Anna Du Penn at
Janine De Tillio Cammarata at the Pause Place
Sarah Coomber at Sandwich Season
Sue Fagalde Lick at
Karen Hargrave and Emma Gore-Lloyd at
Nurse Kristin at
Kerri at
Janice Walton at
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
Hospitals, Admissions and Experiences
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
Medications
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.'
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.
- as part of her Caregiving Years Training Academy shares her thoughts via a video, about Navigating The 17 Caregiving Systems. Once you see and hear this, many things click into place. Caregivers are the buffer, translator, communicator, explainer and so much more in terms of being the go-between, advocate, champion and protector of our loved ones. The systems are different but mirrored here in the UK.
The realities of giving and receiving care
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.
Challenges of Family/Friends Communications
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 Medics & Navigating Healthcare systems
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
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. How it is a Barrier to care, a money-budget-accounting-process NOT a medical-access-to-quality/priority for life/-CARE channel.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 (NB. not care in my opinion)
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.
Starting to manage someone else’s affairs
This is a UK focused video by Carers UK
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?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.Thanks to Kristin for highlighting why Advance Directives are so important. Interventions to alleviate symptoms like pain may seem self-evident, but how far do you want people to go, and in what circumstances? Unfortunately, when your loved one is nearing death, the doctor cannot make decisions for you or tell you what to do. Information is one thing, the actual decision another. ‘Once upon a nurse’ By Nurse Kristin
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.
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Please share a link to any articles about giving or receiving care. This Anthology will grow.
Such a powerful list of resources, Victoria! Thank you so much for including me. !!
Thank you for including me in this incredibly important anthology! What a great way to help people learn how to be a caregiver, receive care and be an effective advocate.