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

1. First Aid Advice

2. Hospitals, Admissions and Experiences

   1. Medications (UK, USA, Canada, Australia and New Zealand)

   2. Organising, Monitoring, Tracking

3. Checkpoint: Are you a caregiver?

4. Starting the discussions (eldercare, partner/spouse)

5. The realities of giving and receiving care, including Carer Mentor poems

6. Communication challenges

   1. Communicating with Family and Friends

   2. Consultations with medics, and closing potential patient-doctor disconnects

7. Navigating access to care support in the US

   1. Access to medical interventions

   2. Access to care support, enablers and navigating life around caregiving.

8. Our Truth & Reality: Dispelling myths, Challenging Societal ‘Norms’, Prejudice.

9. Starting to manage someone else’s affairs

10. Tough decisions and essential documents

11. Support Organisations

Directory of the Authors | Writers | Publications included.

• St. Johns Ambulance. First Aid

• British Red Cross

• Denise Brown at Caregiving Reflections

• Siobhan Calthrop A Sandwiched Life

• Janine De Tillio Cammarata at the Pause Place

• Sarah Coomber at Sandwich Season

• Anna De La Cruz at GenXandwich

• Anna Du Penn at

  Betwixt & Between Proxy

• Sue Fagalde Lick at Can I Do It Alone?

• Karen Hargrave and Emma Gore-Lloyd at #ThereForME

• Kelly at The Disabled Ginger

• Kerri at

  The Other Parenthood

• Dr Rachel Molloy

  Time to Care

• Kira Stoops

  Imperfect Working Order

• Janice Walton at

  Aging Well Newsletter

---

1. First Aid Advice

• St. Johns Ambulance. First Aid

• 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. Hospitals, Admissions and Experiences

• The first questions about hospitals. ‘When the going gets tough, you’re not alone.’ By

  Victoria

• 'Hospitals: a Carer's mantra. Why?' By

  Victoria
  Actionable insights and Ideas/tips.

  • UK Carer’s experiences of Hospital discharge.

  • Carers UK Press Release: Hospital patients put at risk as family members left out of discharge process. (Sept. 2021)

  • Carers UK: Factsheets, checklists and guides

  • Carer’s Rights: What does the passing of the new Health and Care Act 2022 mean?

  • Key hospital discharge tips I’ve learnt myself or from others.

• 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.'

• 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

---

2a. 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.'

---

2b. 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:

  1. 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)

  2. Date of next appointment and follow-up checks

  3. Who will receive copies of letters / communications (so far there has only been a few letters that have been 100% correct).

  4. Summary of key information points, and any changes to current medications and tests with a view to sharing this with the other doctors.

---

3. 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

  Janice Walton
  . Publication: Ageing Well

---

4. Starting the discussions

Eldercare

• Home-aids and Starting the Care Discussion By

  Victoria

• The Eldercare Discussion. Connection and Conversation. Questions and Resources By

  Victoria

• 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.

When a partner/spouse is less able or has physical/mental disabilities

---

5. The realities of giving and receiving care

• 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.”

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: 'Cut through and torn'

• 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.

---

6. 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)

  • Specific language, advocating for ourselves/loved ones with health concerns

  • Beyond the right words, how we (doctors and patients) can listen, not just hear, and closing disconnects in emergency situations.

• 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.

• 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).

---

7. Navigating Access to care support in the US.

Access to medical interventions

• 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

Access to care support, 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.

---

8. Our Truth & Reality: 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.

---

9. Starting to manage someone else’s affairs

This is a UK focused video by Carers UK

---

10. 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?

• 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).

    • Here is her website

    • Here is the article: Tools: Online Class on Dementia-Specific Health Care Directives. Everything Important to Know

  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.

---

11. 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.