I launched the website on my Dad’s birthday in 2020, the first without him. I joined Substack in October 2023 and could finally build the community support network I’d envisaged, with this fifth evolution of Carer Mentor. I’m continuing to build Carer Mentor through collaborations, anthologies, and articles while caring for my mother.

The Carer Mentor website is a hub of tools, resources & insights, as well as a community support network. A portal of hope ❤️ Start exploring here.

All the caregiving articles and resources are freely available. You’ll soon realise how much time, passion and effort I put into supporting carers. If you’d like to support my work, please consider upgrading your subscription to a monthly or annual subscription. Thank you!

Subscribe now

The Carer Mentor content aims to support the caregiver and see the person beyond the acts of caregiving. Examples of articles focused on supporting the caregiver include: Resources: ‘Managing the Mental Load,’ and ‘Wholehearted living: Avoid Toxic Positivity and Rethink our beliefs around Emotions.’

This eldercare anthology focuses on caring for your parents, or older family member/friend who has a chronic health issue or an increased need for care support due to declining health, mental capacity, or physical frailty.

Other anthologies include the Dementia Anthology or the Cancer Anthology.

This 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 another article by sharing its URL in the comments. Thank you!

Anthology Table of Contents

On the left of the desktop screen: use the lines to navigate between sections

1. Eldercare / Caring for your parents

2. Attitudes and mindsets of caring for your parents

3. Caring for your parent(s) from a young age

4. “I’m a carer/caregiver!”

5. Initiating discussions about your parents’ care wishes

6. Aligning on priorities together

7. A sudden diagnosis, crisis or emergency

8. Discuss emergencies, ‘what to do when…’ and end-of-life wishes

9. Be prepared for an emergency or hospital trip

10. When does a parent decide to give up driving?

11. Home aids, enabling your parents’ quality of life at home, reducing risks

12. Discussing everyday finances, bills and banking

13. Care support: where parents live.

14. Care support: orchestrating support at home

15. Siblings, family dynamics

16. Long-Term Caregiving

17. Enabling comfort and quality time

18. The giving and receiving of care

19. A crisis or emergency, hospital and discharge

20. Downsizing, sorting through belongings before they pass or afterwards

21. Palliative, Hospice/End-of-Life

22. After your parent, family member, or friend has passed

23. Caregiving for your other parent

24. Carrying grief as life continues

25. Support organisations and book recommendations

Eldercare / Caring For Parents

I believe that every eldercare experience is unique because each of us is different. Relationships, history, family dynamics, and the impact of disease are just some of the variables that influence the caregiving experience. When we start to consider culture, socio-demographics, digital literacy, finances, access to healthcare and spirituality, we may wonder why caregivers can empathise with each other so easily.

At the heart of any caregiving experience (pun intended) lies emotional labour and grief; our common humanity connects us. Eldercare/caring for our parents involves a litany of tasks to ensure our parents receive the care they prefer and need as circumstances change.

We constantly feel the tension and pressure because caregivers stand at a threshold, interfacing with systems that focus on productivity while we defend and advocate for our fragile, ‘humaning-hard’, situation

We’re doing our best. You’re not alone, even if it may feel that way a lot of the time!

Table of Contents

Attitudes/mindsets of caring for your parents, and caregiving in general.

• ‘Love and Caregiving go hand in hand’ The Silent Suffering of Caregivers | Amanpour and Company June 5, 2023 If you love someone you will be a carer.

  This Amanpour interview with Emily Kenway dispels some commonly held myths and presents the stark realities of caregiving.

• Should I Care for My Parent? Things to Consider by . I recommend reading Viva’s article, in which she shares her caregiving journey, her family’s experience, and the reasons she decided to move home to help care for her mother. This is a linked image of five priceless insights. The simplicity of her words belies the complexity, emotions and wisdom she’s sharing.

  

• “My caregiving journey is a family healing journey” By

• It’s not parenting. (Or is it?) I’m annoyed when caregiving for an aging parent is described as parenting. By

• When the Healthcare System Relies on Invisible Labor. The unseen coordination work that makes medical care possible. By

• The Problem with ‘Self Care’ On the individualization of systemic failures. By

  “Sure, part of this involves finding a balance and distinguishing others’ care needs from preferences. I and others may have found ways to protect our own peace to continue in our care roles in a way that is sustainable, and I was fortunate to have Alex and dear friends to lean on. However, it can be difficult to figure out what that balance is, and there is a lot of caregiver guilt and shame that comes into play. I still distinctly felt the lack of broader support for navigating all of the complicated financial and health decisions, and felt thrown into a complicated world that I knew nothing about and had no one to guide me.” - Anna

• Entangled and Estranged Family caregiving when you’re emotionally detached. By

  “How do you care for someone who has pushed everyone away - including those they expect to care for them? I’ve been thinking a lot about this, because it is the situation I am in with my mother. We have come to a new phase of the care journey, in which I am not physically needed to support her care in the same capacity anymore. And because of our history and relationship, I see her much less.” - Anna

Caring for your parent(s) from a young age

• Growing Up Caregiving: Coping with the New Normal (or Not) by

“I’m a carer/caregiver!”

• Checkpoint: ‘Are You A Carer?’ Many people don’t consider themselves to be a Carer until a Crisis happens. Here are some useful facts, figures and signposting to support you.

  • Carers UK: Guides and Tools

  • 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.” Carers UK

• I recommend reading this series by Tina, when you realise you’re a caregiver and you don’t know what you don’t know:

  “I’m New to Caregiving. Where Do I Start? Oh, Crap! I’m a Caregiver, Part 1: Practical first steps for caring for an aging parent or elderly loved one when you’re new to caregiving.” By Tina

  Table of Contents

Initiating discussions about your parents’ care wishes

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

• How to start talking to your parent about aging. It’s not about having one big talk, it’s about finding a way to have continual conversations about aging. by

• 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.

• The Sandwich Generation. What it really means to care for both aging parents and kids. By

Table of Contents

Aligning on priorities together

• Shoulder, Strength, and the Quiet Courage to Face the Pain (Part 1 of 3) By

  “That conversation marked the beginning — not just of a medical process, but of a shared journey that would test both of us in ways we couldn’t yet see.” - Adrian

A sudden diagnosis, crisis or emergency

• So, your parent got a tough diagnosis. Now what? Making sense of second opinions, treatment options, and tough conversations. By

• ‘A Prelude to Caregiving: Love and Torture.’ A 2015 hospitalisation was only the beginning. This is probably the most painful article I’ve written to date. A grief hangover ensued. Trigger warning for anyone in emotional turmoil over caregiving or at the start of their care journey: this may be too tough to read.

• 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. By

  “When my father called me and told me he had fallen, I didn’t panic. I live more than four hours away, so I asked him if he needed my brother to come and help him get up.

  That’s when he told me to call an ambulance. And that’s when I knew that our lives were going to change forever and that my dad was going to a hospital and would probably never return to his home again.”

Table of Contents

Discuss emergencies, ‘what to do when…’ and end-of-life wishes

• The Week Our Lives Fell Apart: Lessons from a Family Crisis Palliative Care, Social Work, Care Navigators and “The User Manual” By

  “Do This Now: Create a User Manual for Your Life

  In addition to the urgent decisions families may need to make with respect to medical care, a crisis can create a mountain of important administrative work at a time of high stress. If you or your loved one are incapacitated, who will direct the finances, pay the bills, manage the home, make new housing and care arrangements, and how will they know what to do? The final lesson to share is to create a user manual for your life.” - Saskia

• When Family Won’t Talk About Death: A Caregiver’s Guide to Essential Conversations Handling end-of-life decisions when everyone else avoids them...By

• 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.

• Talk to your parent now about hospice. How do you know whether your parent needs hospice? How do you talk to them about it? by

Be prepared for an emergency or hospital trip

• First Aid: Primary Survey, CPR and Recovery Position. By Victoria

• What You Need to Know Before an Unexpected Hospital Trip 🎁 Gifting essential learnings. Download 3 checklists. By Victoria

Table of Contents

When does a parent decide to give up driving?

In the UK, driving licences expire at 70 years of age, so when you reach 70, you need to renew your driving licence if you wish to continue driving. You then need to renew it every 3 years. Drivers must meet minimum eyesight standards and declare any notifiable medical conditions to the DVLA. There is no upper age limit for driving, but the DVLA must be notified of any health changes. It’s a legal obligation. Anyone over 70 needs to renew their license and check their insurance is valid. [Is the government going to change driving licence rules for the over-70s? 23 Oct 2025]

• Hanging up the car keys. A Dad/daughter conversation by (US)

• Should My Loved One Still Drive? Is it Time to Take the Keys? by (US)

• Is your parent still driving? How to help them be safer before it’s time to hand over the keys. There are things you can do to make sure your parent is safe driving in their later years and conversations you need to have before they become unsafe. By (US)

• Is it time your parents took a back seat? It’s hard for our parents to stop driving but a bit of planning and some support can help. by . (Australia) I highly recommend watching the videos. Put yourself in the shoes of the 80-year-old lady.

Table of Contents

Home aids, enabling your parents’ quality of life at home, reducing risks

• 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

• Wearable Safety Devices: ‘What will you do if you/your loved one has a fall?’ Considerations, features and my experience. By Victoria

• A Home That Still Fits. “Why adapting the home isn’t about removing risk — it’s about preserving independence, confidence, and the life someone still wants to live.” By

Table of Contents

Discussing everyday finances, bills and banking

• Bills & Essentials: Are the Lights Still On? Caregiving & Bills: Keeping the Essentials Paid Without Taking Over by Tina

• 8 Resources to Help Caregivers Understand the Legalities of Managing a Loved One’s Finances. Trusted places to learn what you can do legally (and what won’t work) by Tina

• Money, money, money! How to start talking about finances with your parent. Tips and conversation starters for your first talks about finances with your aging parent. By

Table of Contents

Care support: where parents live.

• How Do I Know When My Loved One Should No Longer Live Alone? Five Indicators That It’s Time for Dad to Live with You. By Tina

• Anyone seen my toothbrush? By Courtney Martin at the examined family. Courtney shares her transition to cohousing intergenerationally, moving to a house where her parents (her father with advanced dementia and her mother with chronic illness, having cared for her father for over a decade) live with her and her family. Her brother lives closeby. I highly recommend reading her articles.

• Granny flats: when love and the law collide. Thinking about a ‘granny flat’ arrangement for your parents? Here’s what you need to know by

• Is Care Migration the Next Frontier? Or another bandaid for our broken care system? by

• The Staggering Costs of Elder Care in America My Experience with Medicaid, and Threats our Safety Net faces by

• Is it too early to look at assisted living? (Probably not!) A common mistake I hear when I ask friends about their mistakes is that they wish they had gotten their parent into assisted living earlier. by

• In caring for aging parents, can we see assisted living as assisted loving? Making the decision to place my mother in memory care as her dementia progressed was wrenching but each day I find that the circle of love can extend beyond her family. by

Table of Contents

Care support: orchestrating support at home

US-focused articles

• What Are the Different Types of In-Home Care for Aging Parents? by Tina

  Oh Crap! I’m a Caregiver, Part 5: What each kind of care means, when you might use it, where you can find it, and how it may be paid for.

• Learning to ask for help. Our “awkward, brave & kind” email and the response we received By Sarah Coomber. Sarah shares the email she sent to friends asking for help, and how they used a Google Calendar to coordinate efforts. Practical, word-for-word advice.

• The Things Nobody Tells You About Asking for Help. By

• Caring Bridge “In 1997, our founder, Sona Mehring, had the idea for CaringBridge when she offered to support her good friends, JoAnn Hardegger and Darrin Swanson, keep everyone updated after the premature birth of their daughter, Brighid.

  After making emotionally taxing and time-consuming calls, Sona knew there was a better way. She created a website to keep everyone connected and surround JoAnn and Darrin, with support - and CaringBridge was born.

UK-Focused articles

• Here in the UK, I think there’s an assumption that, with the NHS (free at the point of clinical need), care, including end-of-life care, is readily accessible to everyone. It’s not. It’s worth investigating the availability of services (agencies and charities) and their cost before having care discussions. In England, social care funding thresholds determine if you pay for your own care (self-funding) or get local council help. If you have assets (savings, investments, property) above £23,250, you pay full costs. If assets are between £14,250 and £23,250, you pay a tariff income, and if below £14,250, you pay only from income. Your local council may be aware of additional services, but generally, the only difference (as far as I know) is how the care is funded: contracted by the council or self-funded. In England, the quality and availability of services are a ‘postcode lottery’.

  Paid Care can include: companion care, carer support and basic care tasks. Care support for more complex needs is difficult to find. Overnight ‘awake calls’, where someone watches over your loved one while you sleep, are difficult to find and postcode dependent. We found that our local hospice charity could provide some care support, depending on their team’s availability.

• A UK online organisation: Lottie. “Compare care homes, home care services and retirement properties”

• Carers UK information about Finding Care Agencies and Care Workers

Siblings, family dynamics

• Why Sibling Tension Explodes During Caregiving (And How to Calm It) Answers to why this feels so heavy...By

Table of Contents

Long-Term Caregiving

Enabling your parent to live the best quality of life possible. The challenges of caregiving long-term with unpredictable, worsening health. The uncertain duration, step-down progressions, and trying not to wait for the other shoe to drop. Trying not to be subsumed by the caregiving, sustain a sense of self, and savour the small moments.

Enabling comfort and quality time

• Breaking the Silence: Addressing Elderly Parents’ Loneliness Together By

  “Suggestions for managing loneliness in our parents

  Loneliness in our elderly loved ones is a serious concern that affects both their mental and physical well-being. I want to share what I have found works, as well as some other strategies I’ve learned from others, to help your elderly parent cope with loneliness.” - Kerri

The giving and receiving of care

• Caregiving Misperceptions and Realities. What are our socially conditioned assumptions about caregiving, caregivers and respite? What can we do to support one another in our communities? By Victoria

  “The reality is that we optimise situations for the care, comfort, and well-being of our loved ones. We must make careful trade-offs between risk and benefit, rather than prioritising productivity. This includes advocating for ourselves by taking our safety, health, and capabilities into consideration and setting our boundaries. This is why care solutions are unique and need to be personalised, not generalised.” - Victoria

• I promised not to put her in a nursing home......but I did it anyway. By

  “The undercurrent of judgment that “putting a loved one in a home” is somehow a breach of trust, a break in a contract, or even abuse or neglect permeates the family caregiving space. Sure, they will say, “No judgment,” but it’s there.

  Like those who place their parent in a facility of some kind are somehow weaker, less dedicated, or selfish.

  It took me a long time to break free from the misconceptions I had about what it would mean to allow my mom to live in a nursing home.” - Jeanette

• When you need as much healing as the one you care for. My burnout didn’t come in a big wave that overwhelmed me. It came in the little moments that kept building and building. By

• A Caregiver’s Temper by The Caregiver shares the very real emotional turmoil that caregivers go through. Imagine this day in and day out for a very long time. Imagine if someone comes in with clichés or ‘advice’ (even if it is well-meaning). Imagine the impact on a caregiver’s mental health over time. THIS is why we need community support.

• The Hazardous Middle Stage of Caregiving (And How to Prepare) Understanding the hidden grief of loss...by

• 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.

• I’m Not Mother Theresa I’m a sober daughter, a work in progress trying to do the next right thing By Jodi is the primary caregiver for her mother who has Dementia. She shares the realities of everyday caregiving.

• Recognizing Trauma Responses: A Lesson in Compassion. The things Mom’s aide did that drove me crazy, I’d done—to survive abuse by

• Backup Plan for the Backup Plan If you do nothing else this year, make sure your caregiver plan has contingencies. In caregiving, “One is None.” By

• Poem: ‘The Eldercare Rollercoaster’ The unpredictable emotional ride-along when your loved one’s health has an increased, accelerated decline. By Victoria

• Poem: ‘Cut through and torn’ By Victoria

• Poem: ‘Friends, I see you!’ I wish you restorative sleep, moments of joy and peaceful calm. By Victoria

• 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. By Victoria

• Poem: ‘The ‘We’ of Cancer What I do to navigate both of us through anxiety and uncertainty. By Victoria

A crisis or emergency, hospital and discharge

• The Recovery U-Turn. When recovery isn’t a straight line and caregiver instincts become vital. by

  “the cognitive fog rolled in and my caregiver “spidey senses” kicked in to high gear. I was used to my father-in-law’s typical apathy towards taking care of himself - even the lackadaisical manner in which he was treating his recovery from surgery. This was different - something was off.

  We were staring down a 2:30 PM lab deadline - the kind of hard stop that, if missed, creates a medical black hole over the weekend. I had repeated this deadline to him like a mantra for three days. Yet, when I called at 2:00 PM, he was drifting.” - Gen X Caregiver

Downsizing, sorting through belongings before they pass or afterwards

• What to keep... ...what to throw away by

Table of Contents

Palliative, Hospice/End-of-Life

US-based definitions and experiences

• Cancer: What Does Remission Really Mean? A Plain-Language Guide to Cancer Terms Like NED, Stable Disease, and Response by

• Palliative versus Hospice. What’s the difference? By

• Palliative Care Isn’t What You Think You don’t have to be dying, for one thing

• 3 Ways Hospice and Palliative Care Are Different When we talk about hospice and palliative care, the two terms often exist within the same breath. (includes information on Community-based palliative care) by

• My Mother Was Dying… So Why Was She Still Being Kept Alive? The One Question That Finally Ended My Mother’s Suffering by

  We requested a family meeting with the hospice physician, nurses, caregivers, and our entire family. After listening to their reports, I asked one simple question: “If she is in hospice, why is she still receiving multiple life-sustaining medications?”

  I recommend reading more about Carol’s experience and the key lessons she wants every family facing hospice care to understand.

  “.. this experience taught me something important: you cannot assume; you must ask questions, review care, and advocate for your loved one every step of the way.” - Carol

• Home Again When the timeline compresses a well-oiled machine springs into action. by . This is a heartwarming read because Edie shares how her siblings pulled together to orchestrate Nina being at home.

  “Coming home to die. That term had always sounded so dark and morbid. Now, it was a ray of light, something we desperately hoped we could make happen, the pony at the bottom of the shit-pile Nina had been digging through for years.” - Edie

• The Lighter Side of Hospice Humor is an unlikely but welcome bedfellow by where she highlights ‘s work and words.

  Humor and hospice may not seem a natural combination, but their pairing also makes perfect sense. Humor normalizes a natural process—dying—that every single one of us will experience yet rarely discuss. It is an inevitable event for which we are, somehow, totally unprepared. Of course there is going to be some weird sh*t going down. We might as well enlist it for a laugh.

• What’s a good food for a hospice patient to eat? By

  “What’s a good food for a hospice patient to eat? Something with lots of vitamins, right? Calorie dense? Protein-packed?

  Fuck that.

  A good food for a dying person is whatever the hell they want. Big Mac. Tacos. That certain random pastry from the bakery two towns over. Baileys on ice. Linguini with clam sauce. An ice cold beer. We had a patient who had her mouth swabbed with red wine when she was too weak to swallow.

  As long as they can chew and swallow it without choking, it’s fair game.

  If anyone tries to shove those Ensure drinks down my gullet for months on end one day, I’m gonna haunt them. Big time haunting.

  Can you tell it’s lunchtime and I’m hungry??? Good thing I have my car candy (gummy worms)!” - Denise

• What does “the end“ for patients with dementia look like? By

  Sometimes, patients won’t eat more than a bite or two for days or weeks in a row. Then, they’ll eat great for a week. Then back back to the other.

  Sometimes, they will smile and be alert all day. Then they will sleep for three days straight. Then go back to normal. Up and down.

  The family asks, “how long can this go on?”

  The answer is: much longer than you think.

  It sucks.

  It’s sad.

  I hear family say all the time, “my dad would never want this.”

  You’re not alone in wishing that it would just be over. You’re not alone in not wanting to spend too much time in the room with your loved one with dementia. It’s depressing, and there’s nothing anybody can do.

  It’s February now. Sometimes in dementia land it feels like it’s always February. It’s just dark and cold and sad and quiet and miserable.

  But spring will come again. - Denise

• International End-Of-Life Doula (INELDA)

  INELDA defines an end-of-life doula as a nonmedical companion who provides personalized and compassionate support to individuals, families, and their circles of care as they encounter and navigate death, loss, and mortality. An end-of-life doula advocates self-determination and imparts psychosocial, emotional, spiritual, and practical care to empower dignity throughout the dying process. - from the website

• US National End-of-Life Doula Alliance (NEDA)

UK-based information

The tip I give to carers in the UK: the best recommendations for quality care homes and palliative/end-of-life care are Hospice UK, local Maggie’s 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 care 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

Table of Contents

After your parent, family member, or friend has passed

UK information

• UK Government

• Citizens Advice

• Marie Curie PDF

• Bereavement Advice Centre is a free helpline and web-based information service provided by Co-op Legal Services.

US information

• US Government

• National Institute of Aging

• AARP

• Don’t Wait To Probate In the U.S., probate is a critical step to ensuring that a loved one’s debts are resolved and assets are transferred. Not doing the work can lead to complications. By

Caregiving for your other parent

• You’ve made it through. A few reflections at the beginning of a new year. By

Carrying grief as life continues

• Poem: ‘Echoes in the Walls’ Reconciling with grief over the festive period. Written by Victoria. I wrote this poem after Dad died.

• My caregiving is over...why am I still freaking out? by

  “Towards the end of her life, over the last several months, she became less able to make her own decisions and, I think, was too exhausted to keep trying to, so these moments became more stressful in my life. And then, in the end, I made decisions, considering her wishes, on how the last few days of her life would go.

  I am still recovering from all of that and grieving from the profound loss of the woman who loved me the best she could for as long as she could.” - Jeanette

• When Grief Is Relief. The Truth We’re Afraid To Admit By

  “When my mom died, after more than five years of struggle with Lewy Body Dementia, I exhaled. My first thought was “Finally! It’s over,” uttering the same sentiment that I felt was so heartless two decades before. I was grateful she was free from the confusion of her own mind. I was also relieved to be done with the constant gnawing anxiety of visiting the nursing home (which was in a bad neighborhood) and of bracing myself for the phone call from my sister telling me that she had passed. The struggle – hers and ours – was finally over.” - Carolyn

• Personal Reflection: ‘Grief, Love persevering’ The painful threads within us.

• ‘Grief is messy. It’s not a tidy five-stage path.’

  Lucy Hone, a public health Resilience Researcher, shares her insights on grief following the loss of her daughter. She draws on her experience as a resilience researcher to support and analyse her own grief journey. She differentiates between grief reaction, which is uncontrollable, and grief response, which involves active choices to manage grief and having more personal agency. Hone emphasises the importance of oscillating between confronting grief and taking a break from it, a concept known as the oscillation theory.

Table of Contents

Support organisations and book recommendations

This book list includes dementia and caregiving books

Please like ‘❤️’ the article to guide others here.

If you know someone who could benefit from these resources, please share Carer Mentor with them

Please share this article/restack in Substack so others can find these resources. Thank you!

Share Carer Mentor: Empathy & Inspiration

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. Caregiving Hacks / Tips, including home aids and safety alert devices

3. Hospitals, Admissions and Experiences. Sharing the realities of hospitalisation. Actionable insights, ideas and tips.

   1. UK including my mantra and how I advocate for my loved one and myself

   2. USA

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

5. Organising, Monitoring, Tracking

6. On the cusp of Caregiving

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

8. The realities of giving and receiving care,

   1. Poems I’ve written about caregiving

   2. Realities of caregiving and receiving care

   3. Asking for help and support, including a literal example

9. Communication challenges

   1. Communicating with Family and Friends

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

10. Navigating access to care support in the UK

11. Navigating access/insurance and care support in the US

    1. Access to medical treatment/interventions

    2. Insurance / access to care support, and navigating life around caregiving.

12. Navigating Access to Care Support in Australia.

13. Dispelling myths, Challenging Societal ‘Norms’, Prejudice.

14. Dissonance in value: care, productivity and emotions

15. Tough decisions and essential documents

16. Support Organisations

Directory of the Authors | Writers | Publications included.

• St. Johns Ambulance. First Aid

• British Red Cross

• 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

• 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

• Tina at Dad Lives With Me

• Cindy Martindale at Smarter Caring, Smarter Living

• Dr Rachel Molloy at

• Mel Schlessinger at Loss To Living

• Karen Lutfey Spencer, PhD at I’m Not Gaslighting You

• Kira Stoops

• Janice Walton at

Back to Table of Contents

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. Caregiving Hacks / Tips

Back to Table of Contents

3. Hospitals, Admissions and Experiences

UNITED KINGDOM

• Sharing the realities of hospitalisation. Actionable insights, ideas and tips.

  • My mantra and how I advocate for my loved one and myself

  • UK Carers’ 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.

• 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.'

Back to Table of Contents

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 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

• 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

• When the Healthcare System Hands the Burden to Caregivers by Allison

  “When I explained that I wasn’t a nurse, and that I didn’t feel comfortable taking her home when she was so fragile, they nodded sympathetically—and discharged her anyway.

  I was livid.” - Allison

Back to Table of Contents

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.'

Back to Table of Contents

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:

  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.

Back to Table of Contents

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.

• Carers UK: A guide for LGBTQ+ carers

• Taking on a caring role:

US Specific:

• Caregiving 101. It Helps To Be Prepared. By . Publication: Ageing Well

Back to Table of Contents

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

• Having “The Talk” Without Blowing It Up (What Actually Works) How to begin conversations about help, change, or decline By . 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

• Caring for Parents: Being One Step Ahead. Thoughts and tips on practical ways to be prepared for parental decline By 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 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

Back to Table of Contents

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: ‘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.

• Poem: ‘The ‘We’ of Cancer What I do to navigate both of us through anxiety and uncertainty.

Back to Table of Contents

b. The realities of caregiving

• Less Than, A Caregiver’s Poem… And Why Assessments Piss Me Off By . 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

  “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.”

c. Asking for help and support

• Learning to ask for help Our “awkward, brave & kind” email and the response we received By 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 . (US focus) Cindy shares some practical tips for caregivers, useful reframes to rethink asking for help and list of resources.

Back to Table of Contents

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)

  • 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, (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).

Back to Table of Contents

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 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.

• 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

• The Staggering Costs of Elder Care in America. My Experience with Medicaid, and Threats our Safety Net faces By shares her Medicaid insights and tips.

• A Business Insider article by 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 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

• How I Save Money On Medical Bills Life is more expensive for everyone, and getting worse - here’s what I do. By

• 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.

  Back to Table of Contents

12 Navigating Access to care support in Australia.

• (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!

  Back to Table of Contents

13. 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.

Back to Top

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 ‘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!

Back to Table of Contents

15. 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).

    • 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.

Back to Table of Contents

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.

Subscribe now

Please share a link to any articles about giving or receiving care. This Anthology will grow.

Return to Index Giving Receiving Care

I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

Subscribe now

Let’s consolidate our hacks and tips to help each other!

This article provides a reference list of tips, hacks, and Ideas that help us daily in our acts of caregiving.

There is so much more to caregiving than the acts of giving care, and we are more than the label/role of being a caregiver. The majority of Carer Mentor anthologies and articles explore the full breadth and depth of being a carer. But this article collects tips and ideas for tending to the needs of a loved one or the person you’re caring for.

Drop any hacks and tips in the comments.

Please ‘❤️’ LIKE the article so others can benefit from our experiences.

Table of Contents

Priming for Hospital

At Home Monitoring

Communication/Medical Consultations

At Home

• Organising

• Filling a Paper Prescription

• Repeat Prescriptions

• Eating and Drinking

• Sitting comfortably

• Keeping warm

• Gadgets, gifts and innovations

• Showering and shaving

• Sleeping

• Safety including what to do when there’s a fall.

• In Home cameras

• Wearable safety devices - detect falls, GPS and response service

• Cleaning and messes

Outside, Away from Home

Priming for Hospital

Everyone needs these free insights!

This article [published March 7 2026] contains access to a Free Download containing this essential information: 3 checklists:

A) Hospital Go-bag for emergencies

B) Admission and ‘checked in’, they have a bed in the hospital.

C) The Caregiver’s Go Bag—it contains more, a camping-in-the-ER necessity! If you have other ideas you’d add, let me know. Average time for Review & Treat in Accident and Emergency, pre-admission. 6-8hours, most were 14 hours.

A) Hospital ‘Go Bag’ for Emergencies

Key thoughts:

• Carer’s bag preps for being in ER vs. patient’s bag is for admission

• Our caregivers’ Go Bag has 19 Tips

• Reasons to keep to essentials: restricted space in bedside cupboards; we can bring/change things during visiting hours; limit items to reduce the stress of finding things!

It’s a relief to know our person’s go-bag is primed for an emergency.

1. Short-sleeved pyjamas (so the cannula /injections into veins are not impeded). Pyjamas are better than a nightdress. A nightdress can easily bunch up, or restrict movement in bed.

2. One change of clothes

   1. Tops: a cardigan, or fleece jacket as one arm may need to be out for injections/a cannula: E.g., a vest or a tee shirt (no buttons or zips).

   2. Bottoms: E.g. Trousers, tapered ankles/jogger pants tucked into socks to avoid slipping on trouser legs if they’re sitting on the toilet.

3. A warm dressing gown that can be used as a blanket over the thin hospital blankets. Patient rooms get cold at night. A long, warm dressing gown can also act as an overcoat.

4. Bed socks with rubber grips on the soles. It is better than taking shoes/slippers on and off

   • Poor circulation can make feet cold at night. The grips can offer extra reassurance in bathrooms

   • Pyjama bottoms. Tuck trouser legs into socks if they’re a bit long to avoid tripping/falling over, when they’re down at the toilet.

5. Small towel & Wash bag: small liquid/bar soap (some hands don’t have the strength to squeeze bottles), flannel, small travel-size toothpaste, toothbrush, headphones, earplugs (noisy on a ward), pens, post-its, phone charger.

6. Their Phone: Put a paper copy of emergency contacts in phone case.

7. Face wipes and toilet wipes. Roll of toilet paper. Why do hospitals only have thin sheets of single-dispensed paper? Not great for toileting if you have arthritic hands, or have to keep pulling paper!

8. A half-empty tissue box to act as a holder for e.g. spectacles, notebook, pen, face wipes etc.

9. Small bag of current medications and inhalers NOT full pack, as we rarely get them back.

10. A book or a puzzle book like Sudoku.

11. Put a note, a photo of yourself, e.g. as a screensaver on the phone or a small letter to comfort your loved one in the hospital.

    Ref: “A little note in a pocket of the bag reminding her that I love her. It might not be useful but my heart will always be with her in the moments I’m not” Thank you, for this heartfelt idea Tea, Tissues & Therapy ☕️

B) Admission and ‘checked in’, they have a bed in the hospital.

Admissions can be late afternoon or at night. Once admitted, these are the things I’ve done to settle my parent for the night. Then, I go home to sort out the bedroom post-paramedics visit before I eat and sleep.

1. Shoes and a coat take up space - take them home. Usually, the paramedics wrap the patient in blankets, so a warm dressing gown or just a fleece jacket and slippers are enough for the trip to the hospital.

2. Things to put within reach of your loved one (bedside or over-bed table):

   1. the tissue-box/small container with tissues, spectacles, wet wipes and phone.

   2. Water with a plastic straw, a packet of biscuits that they can easily open.

3. Change day socks to the bed socks with rubber grips. They may not be able to bend down to put on slippers overnight. Avoid falls and slips.

4. Tie a plastic bag for waste to the bedside table.

5. Ensure the change of clothes and wash bag are easily accessible in the bag (don’t unpack them)

6. Give the 1-2 days of medications to the on-duty nurse. They’re usually locked in a drawer (UK information).

   1. Ensure nursing staff are aware of what has been taken and what hasn't that day.

   2. Ask daily about what’s been administered and why. This way, you know how many days the usual prescription was disrupted, and you’re clear on what’s being done and why.

C) Caregiver's Go Bag for ambulance trips.

1. Essential patient reference documents:

   1. List medications (dose and frequency of administration), including allergies to medication or latex (dressings/plasters). Five copies

   2. Medical history summary- highest priority conditions, last investigations, incl. CT, PET, MRI, endoscopy, colonoscopy, biopsy, and blood tests (haemoglobin, blood clotting factors, cancer markers). Five copies. Be prepared to make clear statements of this to medics. (See below about communication)

   3. Name of primary care physician/GP and surgery practice

   4. Legal documents and health directives: Power of Attorney (PoA), Living Will, Do Not Resuscitate (DNR) if applicable. Emergency Health Care Plan (EHCP). Any important intervention alert e.g. specific issues with intubation, anaesthesia

      1. US: Living wills and advance directives for medical decisions incl. Physician orders for life-sustaining treatment (POLST). Author: Mayo clinic

      2. UK: Advance Care Planning Link to Macmillan Cancer Support

2. Small notebook and pens, to write down everything plus the names of EVERY person, doctor, nurse, health care assistant, each paramedic. Names and titles in a book and using them in conversation is essential.

3. YOUR PHONE! The simplest most important thing and I missed stating it. Thanks to for highlighting the phone, and important info as the giver/receiver of care!

   making sure your phone is set up that emergency contacts and medical information is accessible in case of incapacitation, like in an accident or something.

   Especially with blood type in case of needing a blood transfusion. I have O negative RH negative blood type and can only receive that type. O positive or any other can be harmful, for example.

4. In a notes exchange with I remembered this tip ‘Record the conversation’ - your Phone is a great way to record conversations (let the person know you’re recording so that you don’t miss important information). Time can pass fast. To not miss anything, and to listen back later. I think we’re meant to tell the doctor/nurse we’re recording for our own personal use. Sometimes I do, sometimes I don’t. I may emphasise I’m recording if I’m getting the ‘brush off’ or ‘yes dear’ spiel! Apple watches do this too, I think.

5. Powerpack to recharge your phone: One of the best buys. Check your phone's compatibility.

6. I don’t take headphones or ear pieces for my phone because I need to overhear everything people are saying, AND listen out for symptoms changing.

7. Protein bar and individually wrapped biscuits. To avoid hypoglycaemia, I carry these in any bag we take to appointments.

8. A bottle of water with a plastic straw, for your loved one because no one can drink from a bottle lying down, and a paper straw dissolves fast.

9. Tissues, wet wipes, small towel/flannel.

10. Depending on your family member's needs: incontinence pad x 2, underwear, wet wipes.

11. Plastic trash bags for dirty clothes/waste

12. Cotton washable scarf that can double as a shawl/blanket/pillow

13. Face mask and hand sanitiser.

14. Cash for a taxi. Twice I needed to ride in the ambulance and needed a taxi to get home around midnight. Have a local taxi company number ready.

15. Hair ties and grips = holds things together = can bunch up clothes out of the way. e.g. when they’re using a commode or being sick.

16. Glasses and glasses case, artificial tears for dry eyes,

17. Lip balm, and chewing gum.

18. A book you’ve read, a puzzle book like Sudoku - something easy/familiar to pass the time but that isn’t too distracting. (Thanks

19. A box of aspirin and paracetamol. This may seem odd if you’re going to a hospital but twice I’ve had a headache/symptoms and it was hard enough getting attention for my parents, so now I take medication for me. FYI Aspirin

    Aspirin works by reducing this stickiness, which in turn lowers the risk of blood clots forming and makes the blood thinner. This is why the NHS recommends chewing 300mg of aspirin if you think you’re having a heart attack. You can do this while waiting for an ambulance to arrive.

Back to Table of Contents

At Home Monitoring

1. No Touch Forehead thermometer. Purchased September 2024.

   1. If your loved one is immunocompromised and has a temperature over 38’C use a cold wet flannel on their forehead to bring down their temperature.

      I’ve been advised to call for an ambulance at this temperature. It’s worth priming yourself with medical advice for ‘Alarm symptoms’ and ‘what to do when…’ scenarios.

2. Oximeter: Pulse and Oxygen saturation Similar to the one we purchased in 2020

   1. Pulse Oximeter(Amazon) and How to use a Pulse Oximeter at home video. Normal Oxygen Saturation 95-100%

   2. NHS (published in 2022) How to use a Pulse Oximeter and a handy tracking sheet.

5. Blood Pressure Monitor Similar to the one we purchased in 2017

   1. How to use a Blood Pressure Monitor (British Heart Foundation Webpage and video)

   2. The electronic monitors can be glitchy. I recommend taking 2-3 readings.

Back to Table of Contents

Communication/Medical Consultation

For an emergency be prepared. I recommend having your ‘6-second Emergency Info-Speech’ ready so you can focus on immediate issues!

1. Symptoms & current situation: what, when, where (location on body), intensity, within what timeframe and compared to your loved one’s norm

2. Medical history in brief

3. Current medication

4. Medication allergies

💡Consistent, clear, direct priorities/information. Use these articles to help prepare:

Consultation with a doctor - how to help ourselves, close patient-physician disconnects.

1. 'How to close patient-doctor disconnects.' Building our language/questions to feel like we've done our best to advocate for ourselves AND improve our chances of being heard in a medical consultation.

   What do you say when you’re consulting with a doctor or nurse?

   How can we advocate for ourselves, identify actionable phrases to use with medical staff and close potential patient-physician disconnects?

2. 'Beyond using the right words, how can we improve our interactions with doctors?' What can we do to be heard in the medical consultation?

   Each moment counts. How much alignment and understanding will you and the doctor have in an emergency? How can we optimise the dynamics and interaction as the patient/caregiver?

At Home

Organising

1. A Caregiver Organiser in How to Reduce Stress During Caregiving. Journaling to Track and Organize by (Thanks, Janine!).

   1. 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’

2. 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. A tip about information management, from “ I have a list of my mom's meds, insurance cards, pacemaker info card, etc. in a folder labeled MOM on my phone. I'll also use the info ℹ️ on the phone to add other notes for that particular photo. It comes in handy when out and about.” A tidy idea, thanks, Janine.

4. Calandarpedia is a free resource. On the left you’ll see this view click on the format you prefer. I like to use a yearly calendar in Excel format. Click the hyperlink and scroll to the bottom of the page to see the different templates E.g. Template 7. The aligned days helps me to see where the monthly appointments fall

   

   

Back to Table of Contents

Prescriptions

UK Paper prescriptions

If you are given a GP or specialist prescription on paper I recommend asking the doctor to spell the medication and confirm the drug class that it belongs to.

• Handwriting may not be legible.

• One letter difference can mean the difference between a pain, anti inflammatory drug and a hormone treatment for cancer.

Check the milligram dosage, frequency, and if it needs to be taken with/without food. (Always read the patient information leaflet inside the medication box, and ask your doctor if the ‘indication’ (an indication refers to the specific medical condition or symptom a medicine is used to treat, prevent, or diagnose) does not match your/your loved one’s diagnosis.

always Google search the drug name so that I can print out the patient information from trusted cancer organisations, for our awareness. This is an added validation step.

i can then make sure the pharmacist is providing us with the right mediation. Busy pharmacists need support.

Repeat Prescriptions

Managing repeat prescriptions (UK specific). If in doubt always check with your GP practice.

Via the NHS App

• When the NHS App was launched I completed forms with the GP Practice to have access, and manage prescriptions and appointments for my parents

• Via the NHS App on my phon I can switch between our profiles, order repeat prescriptions. There is a list of pre-approved medications and I tick box the ones required. A GP then approves the request and this triggers a prescription at our nominated pharmacy

• I set up a delivery for my parents medications

Via eRD = electronic Repeat dispensing

NHS England » Electronic repeat dispensing (eRD)

• This is when your GP does a batch approval of, for example, a years worth of repeat prescriptions. I thought this was what I was already doing via the NHS App

• BUT, No. The regular medications are pre-approved in a batch and held by the pharmacy. Each month, the pharmacy delivers these to our door.

• This ONLY works because there is no change in the type, dose, frequency or formulation of medications.

• I double checked with our GP practice AND the pharmacy. A few days before a delivery was due I rechecked with the pharmacy to avoid running out of pills.

  This is the 'Never Assume' Carer Mantra in Action. The pills were delivered.

• PRO TIP: I ensured the delivery is on a Thursday, so if there were any issues I could go to the pharmacy early on Friday. Pharmacies are closed at the weekend.

Eating and Drinking

1. A thermos cup

   1. a large grip handle, for those with arthritic gnarled hands, or who have difficulty gripping smooth cups/glasses

   2. slide-close, not a twist or difficult clip or knob. A Slide closure is easier for arthritic fingers

   3. a large stable base, to reduce spills

   4. not too tall - like a mug, to avoid knocking it over

2. A Push-Button top thermos (Similar to the one we purchased in 2016). I make 6-8 cups of tea with sugar and milk, fill up the flask and use this overnight instead of making single cups of tea. It stays hot for around 8-10 hours. I usually pour tea into the thermos cup.

   1. Beware if you have milk in the tea/coffee ensure you wash out the thermos everyday to avoid soured milk, or bacteria build up. Best option no milk

   2. Also really good for hot juices and squash e.g. Ribena or Robinsons orange.

3. Small travel kettle is a blessing if you need to quickly make a cup of tea for yourself or a loved one in their bedroom, in the middle of the night. When things are a little unstable, night times can be the most difficult. Sometimes, getting out of bed and having a warm drink can be worthwhile, to have a deeper sleep afterwards.

4. A Cool-bag is a low cost way of keeping water or other drinks cold in a bedroom. Or a little milk in a water bottle for the overnight cup of tea or ovaltine.

   1. On Amazon you can find small portable fridges that can keep things cold or warm. These can be used at home or on car journeys with the different cable power cables.

5. A transparent water bottle to measure fluid intake

6. Fortified drinks for when loved ones can’t eat much. They have a dense consistency but can work in a little porridge/cereal. e.g. Fortisips, Ensure, Nutricia’s Nutilis, Complan. They’re available on Amazon or ask your pharmacy.

7. Dense liquid honey is a great alternative to throat lozenges/cough sweets. A teaspoon is enough to coat the throat. Even after a drink of water, it still coats the throat and helps with a dry cough.

   1. If the person you're caring for dozes off to sleep with their mouth open, their throat dries quickly.

   2. Honey is sometimes better than lozenges/sweets to avoid a risk of choking when they fall asleep

Back to Table of Contents

Sitting Comfortably

1. Memory foam cushion with side-arms to keep it in a stable position and ‘hug’ at the hip-level. It comes vacuum-packed and tiny but plumps up to its huge size quickly, if you patiently agitate the foam inside. I bought the medium-firm support.

   

Back to Table of Contents

Keeping Warm

The colder, damper days also increase joint aches and pains due to rheumatoid arthritis and osteoarthritis.

A few warmers I researched/purchased over the years, for my parents

• To warm up hands and toes. Hothand’s warmers. I recommend putting them in a small pouch and avoiding direct contact with the skin if you’re sensitive or thin-skinned.

• Slankets; blankets with sleeves. Amazon versions.

• Heated Throws and overblankets: Dreamland’s heated throws and overblankets

• Don’t forget: fingerless gloves and woolly hand muffs are good for someone sitting in a wheelchair, to keep both their hands and legs warm. If I were handcrafty, I’d make them!

Back to Table of Contents

Gadgets and Innovations

1. A phone wallet case with an adjustable, cross-body carry-strap. This is such a handy buy (pun intended)! I don’t have to carry the phone around in my hand. It holds cards a few coins. If I didn’t have a huge number of keys a door key could fit in the snap-pocket.

   

2. A grabber stick with a magnet and rotating end.

   1. This avoids the need to bend down to pick things up, i.e decreases the risk of a fall

   2. Helpful for pickup up keys that have landed in a tight spot.

3. A sock putter-oner. If you've ever pulled a back muscle, you know how difficult it can be to wear socks. This makes things much easier

4. Button hook: Small buttons on shirts and blouses can be tricky to fasten. This makes it easier

5. Amazon has a section called 'Mobility and Daily Living Aids'- it's classified under healthcare in the UK shop. If you look at the left column you'll see various subcategories of aids.

6. We used Ability Superstore(UK mobility aids)

   1. Ultimate Buying Guide for 2024 - Top 10 Mobility Aids (July 2 2024)

   2. Ultimate Buying Guide for 2024 - Top 10 Bathing Aids (June 13, 2024)

   3. Did you know that if you or the person you're caring for has a chronic long term condition or illness, your purchase is exempt from VAT in the UK? VAT Exemption

7. Keeping cool Battery operated handheld fans, Wooden fan or MENO COOL Scarf Cooling Gel Neck WRAP I bought two of these, and they work! :

   • The Meno Cool Scarf is a Simple & Natural but Effective Cooling Aid for Hot Flushes, Power Surges or Tropical Moments!

   • Completely Natural: The Process of Evaporation Means No Refrigeration Or Freezing is Required. When worn, the retained water in the crystal gel evaporates and draws away body heat from the carotid arteries.

   • Simple to Use: Just soak the scarf in water until the crystals have swelled completely, towel dry and use. Re-activate at any time by a short re-soak.

   • Dry Cooling Comfort: The special crystals in the back of the scarf when soaked in water expand and stay cold for up to two days without feeling wet.

8. Keeping warm Slankets; blankets with sleeves. Amazon versions. Heated Throws and overblankets: Dreamland’s heated throws and overblankets

9. Here’s an article of 10 Gifts for Chronically Ill People! A quick gift guide by . Worthwhile browsing for ideas! Thanks Luna Rose.

Back to Table of Contents

Showering and shaving

1. Shower chairs and mobile aids

2. A neat idea is to put a bar of soap in a wash bag that acts like a loofah for exfoliation. An alternative to soap-on-a-string. This helps avoid accidents in the shower, from bending down to pick up the soap and falling over.

3. Some bottles of shower gel and shampoo are on hooks that can hang from rails, so that you don’t have to handle bottles.

4. Batiste Dry Shampoo, No Rinse Spray to Refresh Hair in Between Washes

5. Shampoo and conditioner Caps, No Water, no rinsing. 3 pk - Premium Rinse Free Shampoo Cap - Microwaveable with Conditioner & Vitamins, Nourish & Protect, No Water, No Parabens, Latex Free, Alcohol Free with 1 Pack of Limdo Gloves.

   These are easy ways to wash hair if someone has mobility issues, or dislikes lots of water. This is not the brand I used but it has better reviews!

   

   ,

6. Showering another person by

   “Showering another person, other than your child, is not a universal experience. In June, my mother with dementia fell and caused an irreparable tear between her rotator cuff and her arm. Here you can see her keeping the shoulder up. She cannot remember that she is unable to lift her right arm above waist height. A game changer.🥹

   Time to take action. Dementia delusions mean she believes she showers every day. This was not an easy mission. Is it dignified to stop bathing? Not an option. So here’s how it happens.”…Read more about their process here

   I showered Dad everyday in the evening, and helped Mum when she was going recovering from surgeries and chemo. Melissa’s process is similar to what we did. Gentle ‘clinical’ simple narration through familiar steps helped my Dad who had vascular dementia.

7. Shaving my Dad

   The easiest most convenient way to shave my Dad was using this Braun portable travel shaver. Features: AA Battery powered, foil with trimmer underneath, side trimmer that proved useful, safer for under his neck and around his adams apple and. I usually shaved him after a shower.

   The model we used MobileShave M-90 Shaver

   

   Or the MobileShave M-60 Shaver

   

Sleeping

1. A V-shaped pillow is a good idea for anyone who is coughing or tends to cough. This could be due to some accumulation of fluid in the lungs, a chest infection, or oedema (fluid) due to impaired heart function.

   1. Normal pillows will slide apart if you put them in a V shape, or they may be too soft

   2. I used to bend the ends of the inverted V so it would sit more easily and added normal pillows to embrace Dad. He'd slide down a bit as he fell asleep, but this way, he could drift off to sleepinstead of coughing and fluid building up.

Here's a video. I didn't buy this but you can see how the end sections support and embrace the user. "The V Shaped Pillow is ideal to give you extra support when sitting up in bed or while sitting in a chair. With three individually filled sections, with extra support in the centre section, the V shaped Pillow provides support where you need it.  It can also be used on your lap for working, feeding your baby or reading."

10 Best Sleeping Upright Pillow In The UK published 12 July 2024I think the batwing pillow looks the most interesting as it has all round support. However, I've not purchased any of these. Take a look at the different types

2. For Sleeping, 55 inch Full Body Pillow Long Pillows for Sleeping, Maternity Body Pillows for adults with Cover Velvet

   Bed rails are important when someone is frail, prone to falls or is becoming delirious. (see home aids). If the person you care for is frail, needs some support full body pillows can be a comfort. It’s flexible enough to completely encircle someone, or be used in a V shape, or inverted to raise legs.

Back to Table of Contents

At Home safety

1. Resource/Tools: 'Home-aids' What's worked for us. Food for thought, not a promotion.

2. Handles and locks. A couple of times, just before he was diagnosed with vascular dementia, Dad went to the toilet on his own, locked himself in and couldn’t get out again. It was a scary hour or more, trying to cajole and encourage him to unlock the door. Soon after, we changed the bathroom locks and removed keys from doors. The bathroom locks look like the image below.

   This lock is a twist-turn knob on one side, and on the other side of the door is a grooved counterpart, that can be twisted using a coin. This facilitates privacy and the ability to open the door if needed. All our doors have lever-handles.

   

3. An old fashioned whistle on a string. It’s good on plane life jackets to call for attention AND at home! This worked with Dad, and I’ve given one to family friends where the wife was fainting and couldn’t get her husband’s attention downstairs.

4. Be safe lifting your loved one from seated position and around the house

5. Helpful tips and videos about what to do if you/your loved one falls on the floor. How to check for injuries and getting up with no one else around.

   If someone has fallen on the floor, it can be dangerous for them AND you to try to move them from where they are. Always check if they have pain in their joints, or if they are feeling nauseous or sick or dizzy.

   It’s a shocking experience and traumatic for us as caregivers. I’ve experienced this too many times. Always calmly insist on taking time to check their body and try to calm them if they’re agitated or scared.

   Remember, when someone is on the floor, they are often a ‘dead weight’ and you cannot simply lift them off the floor. You need some leverage and support.

   Here are two helpful videos with advice on how to get up from the floor after a fall. Remember: if you use a chair or any furniture, make sure it’s stable or against a wall. Don’t grab the chair, as you can end up back on the floor.

   Creative Ways to Get Off The Floor!

   Brad and Mike demonstrate 7 creative ways to get off the floor. (July 9 2023)

HOW TO GET UP AFTER A FALL - 3 BEST METHODS

Balance Rehab by Doug Weiss, DPT (January 15, 2024)

Back to Table of Contents

In-Home camera

Here are three versions of in-home cameras

1. IPC360 is on Google Play OR IPC on Apple Store (UK) by Puwell Cloud Tech Ltd - I used this to check on my own apartment when I couldn’t be there most of the time. It could also be used to check on your loved one. You have an app on your mobile phone and can view the room. I used 2 cameras for the hallway-front door and the living room.

2. Ring doorbell and indoor home cameras and system. (UK, EU) I set this up in my parents home and as a motion sensor doorbell system. The cameras are effective. Bonus: when we had a visitor someone upstairs can hear/talk to someone at the door without moving. This also avoids the need to open the door to any stranger.

3. Amazon Echo Show 10 (newest model), HD smart display with premium sound, motion and Alexa, Charcoal (USA) AND Echo Show 10 (Newest gen) | HD smart display with motion and Alexa | Charcoal Fabric UK Version

   I’ve heard of this but not used it. It ties the camera with Alexa. I don’t have Alexa set up, it was too frustrating for my parents to use. However, this looks like a great option.

   shared her experience of using the Echo:

   We used the Echo a lot with my folks in very early pandemic when Dad didn’t want me in their home. Enabling “drop in” between my device and theirs allowed my to have video calls with Mom and reconnect a dropped call without her needing to do anything. It was a lifesaver for short calls when she was having a restless day and longer calls so Dad could do an errand or just to stay connected.

   Am has changed their privacy policy in US recently, which may affect user comfort level, but 4-5 years ago it helped SO much.

Wearable Safety Device

(UK) Sure Safe UK Personal Alarms system

• I’ve tried both the bracelet and the necklace with Fall detection and GPS. Both work well, but he bracelet can be a little heavy for some people and a little chunky.

• I’ll be updating this personal experience soon.

(US) Life Alert

(US) Bewell medical alert

Thanks to Olivia Pegula for sharing this:

BeWell Alert is a US-based wearable safety device for older adults or people with health concerns. It includes fall detection, GPS, and connects to a 24/7 response center.

What stood out to me is that they offer free setup and evaluation with no obligation to subscribe, which made it much easier to try out and discuss with my relative.

It’s not just an app — it’s a pendant with a button, and some versions detect falls automatically. There’s also an option for regular check-in calls, which adds a human touch.

When I introduced it, I emphasized it as a way to stay independent but with backup — that helped the conversation go smoothly.

Back to Table of Contents

Cleaning and Messes

• Steradent tablets are good for dentures but they’re also good for urinal bottles, cups, drinking bottles. When a Steradent tablet is placed in water, it dissolves and thousands of tiny oxygen bubbles ‘scrub’ and kill bacteria

• For the poonamis or shituations:

  • Dr Beckman carpet stain remover,

  • Vanish Oxi Action (clothes and carpets).

• The ‘lasagne bed layering up’. It takes a little while to prepare the bed this way but believe me, in the middle of the night this makes things a LOT easier.

  • Preparation. When the person you care for is sitting elsewhere you can prepare the bed with multiple layers:

    • Waterproof mattress protector with old sheet

    • Large disposable bed pads, fitted sheet over (its a personal preference whether they can sleep directly on the pad or not)

    • Another layer of pads and fitted sheet.

    • I usually had 3 layers under Dad. When the sheets are layered up, you only need to remove the soiled sheets.

  • In this video Nancy shows how to Change the bed with someone in it.

    • remember that for your safety you’re not lifting or carrying someone. There are always ‘how to’s’ to avoid your injury. In the video, Nancy has Bedrails and slidesheets.

Caregiver Success by Nancy the NP (March 24 2019)

If you’re a new caregiver, you will eventually need to make a bed with someone in it. Here’s an easy way to make a bed while keeping your patient or loved one comfortable. You will learn in this video: how to talk to the person to help you with proper positioning, how to use good body mechanics to prevent a back injury, how to make making the bed an enjoyable experience.

Outside, Away from Home

1. AirTags I haven’t needed to use these, but I know caregivers who put these in their loved one’s pocket or bag so they can track where they are. This could be a subtle solution to keep an eye on loved one’s with dementia.

2. Wheelchair bags and pouches can be fixed at the back of the wheelchair. (e.g. Amazon). I prefer to use a small bag/backpack that I carry

3. Beware that you’ll need a waterproof poncho/blanket to cover the user and around the chair in the rain. Otherwise, the seat and their bottom will get wet. (A coat may not be big enough.)

4. To warm up hands and toes. Hothand’s warmers. I recommend putting them in a small pouch and avoiding direct contact with the skin if you’re sensitive or thin-skinned.

5. Don’t forget: fingerless gloves and woolly hand muffs are good for someone sitting in a wheelchair, to keep both their hands and legs warm. If I were handcraft-y, I’d make them!

6. Wheelchair 'Driving' and two videos that I found useful from the NHS (Leeds Teaching Hospitals NHS Trust)

If we were at a kerb with no ramp, I would go down backwards with the wheelchair to ensure there was no tipping forward in our Transit Wheelchair. I would go forward up the kerb.             

Back to Table of Contents

Please ‘❤️’ LIKE the article, to guide others to these hacks and tips.

What tips and hacks have worked for you?

Subscribe now

I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

Index for Giving / Receiving Care.

This index focuses on the acts, practical information, and hacks/tips related to giving or receiving care.

Here are a few golden rules I use:

1. It’s vital that both the person giving and receiving care are safe. For example, learn how to lift a person safely from a seated position.

2. Care, for me, is not about doing things in the most ‘productive’, quickest, or most effortless way possible (because we know tech/hacks). Caring and care itself are not transactions or tasks to be completed. Sometimes, enabling the routine and habits that a loved one is used to is caring in the form of respecting and prioritising their wishes above our own. We gently navigate incremental improvements for safety, ease and quality of everyday living actions.

3. Giving and receiving care is a continuous balancing game between safety, needs, and wants. What we need and what we want can become easily conflicted. For example, my father didn’t want to use a toilet riser seat (a frame that sits over a toilet with handrails). However, he acquiesced to using it when I calmly explained that it helped us lift him off the toilet and was safer for us both. He accepted, out of concern for our safety, LOVE.

4. A constant trade-off is Risk versus Benefit. When the risks outweigh the benefits of doing something, we set a boundary. I have always tried to explain the context, discuss and align with Dad and now Mum. I’d always try to go the extra mile to fulfil their wish, but I’ve learnt where I set a firm line. This line is set where I can easily predict that my energy, stress and difficulties in trying to achieve something exceed the value/goal/benefit. Hence, a firm ‘NO’.

These four rules give you a brief glimpse into how the years of caregiving have influenced my decision-making. This is our process of triaging what’s possible.

The calmest periods are when we have had a lovely, boring routine and can focus less on safety and more on wants and benefits! We can plan and dedicate more time to ‘sorting things out’ / prime ourselves again during these periods.

I hope these articles can help you and your loved ones with the practicalities of CARE.

Please subscribe and ‘❤️’ LIKE to guide others to these resources.

Subscribe now

INDEX OF ARTICLES

RETURN TO iCARE STACK

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.

I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

Have you thought about broaching the topic of Eldercare with your parents or loved ones?

1. What specific words, phrases, or conversation starters have you used to initiate the discussions?

2. What worked or didn’t, and why? Can you share your learnings?

3. What emotions, interpersonal dynamics, and behaviours have you observed during these conversations, either from yourself or your loved one or as an observer?

4. Has the conversation evolved? Stalled? Have you managed to restart the conversation?

5. What connections, talks, and conversations are you having to plan for your future care—with whom, how, when, and why?

Have you started to plan for when you’re older?

Empathy and initiating eldercare conversations.

As parents/loved ones become more frail, the need to discuss Eldercare looms large.

At the start, there is always an uncomfortable disconnect, a mismatch of expectations or a misinterpretation of a person’s intent that can result in frustration, angst, and fear.

When frailties appear, so does the reality that we are mortal and vulnerable. However, there are many ways to preserve our independence for longer. For example, there are many workarounds for routine, everyday functions around the home that can be easily installed.

How agile and open can they/we be? What’s an acceptable incremental change to our routine or ‘way of doing things’?

What are their/our wishes or big ‘No-ways’?

We can do everything we can to stay fit as we age AND make plans to prepare for the future. These two things are not mutually exclusive.

There are no easy answers, standard solutions, or easy fixes to having a productive eldercare discussion. After all, we’re human, so we have many emotions and a lifetime of preferences to navigate.

But I’ll tell you a secret: what may start as a big ‘NO’ can shift to a maybe and an ‘Ok, sure, let’s try it.’

I’ll also tell you straight: many times, an unpreventable crisis occurs that causes people to shift their priorities from wishes to needs/must-haves to mitigate risks or ensure safety and well being.

My number one recommendation is to talk, talk, and talk with open, gentle curiosity.

Don’t enter into a discussion with assumptions, an agenda, or the expectation that it will be a ‘one-conversation-and-done’ event.

Regardless of whether you are the instigator of the conversation, the one who needs more support or the worried loved one/family member/friend, connecting, talking, and reaching out for help is vital.

This is not a project, a tick-box to be managed. It’s a life-changing period and transitioning phase where MANY emotions and dynamics will appear. Even when you’ve completed essential documents, there are still conversations, reminders, and possible revisions.

I recommend creating a ‘warm’ space for openly exchanging thoughts and ideas. Be ready to invest quality time in the conversations.

We can normalise these discussions, remove discomfort and defuse the emotionally charged reticence that usually accompanies the topic of care, wills, probate, etc.

I’d invite anyone with experience or questions to write an article or comment below. We need to talk about this more and help each other.

Leave a comment

An empathetic perspective:

Reread this article as

• an adult child to parents needing eldercare,

• as you now planning for your eldercare future,

• as your friends/executor/children talking with you when you’re older.

Reframing wishes and needs can help us plan for different scenarios and how we engage with others in these discussions. We can’t control the feelings, actions or words of others. However, we can anticipate how we’d like to act and behave in each scenario.

As a long-term caregiver, I’ve had a lot of time to consider all sorts of scenarios, given the rollercoaster journeys I’ve been on and those I’ve witnessed.

Resources to inspire your plans and discussions

Below are some resources about conversations and Eldercare in general.

• Eldercare locator (USA specific)

They have online resources/guides and directories for just about anything, and if you need to talk to someone to figure out WHAT resources might be helpful, you can call them. I knew some of the folks who staffed the Locator phone lines -- they're information/referral specialists and extremely kind and helpful. Their whole job is to help you navigate the system and get connected to people in your/your loved one's area who can help.

• A Beginner's Guide to the End: Practical Advice for Living Life and Facing Death

• The Conversation Project - Conversation Starter Guide Helping people share their wishes for care through the end of life. Free resources and guides

• Five Wishes - (US organisation) The nation’s only national advance care planning program. Providing peace-of-mind for more than 25 years.

• The Farewelling Worksheet: Planning for Yourself - “This funeral pre-planning checklist is for those who believe that thinking about--and planning for--end of life is part of living with intention and self-awareness, not to mention being helpful to family! We’ve organized the process into five sections to make it easier to navigate.”  

• Get Your Shit Together, Founded by Chanel Reynolds, Author of What Matters Most. Co-founder of GYST.com

• How to Prepare Your Digital Life for Your Death 

• Making provision for your Digital Assets in your Will (UK based) Just Wills Legal service

3. Other Carer Mentor articles (UK Specific)

4. Other publications sharing great advice and resources (US specific) :

• • Is Care Migration the Next Frontier? Or another bandaid for our broken care system?

  • Care Math: Girl Math has Nothing on these Stats. No one can make it make sense.

• In caring for ageing parents, can we see assisted living as assisted loving

  • Amy highlights the organisations - ‘Senior Living Selections’ and ‘A Place for Mom’

• Low on Money? Then what

Please ‘❤️’ LIKE & consider subscribing!

Subscribe now