Hello! If you’re new to Carer Mentor, welcome! Thank you for being here! You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?
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!
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
The Official Paperwork - Be aware, learn, prepare with your loved ones
Discuss emergencies, ‘what to do when…’ and end-of-life wishes
Home aids, enabling your parents’ quality of life at home, reducing risks
Downsizing, sorting through belongings before they pass or afterwards
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!
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 Viva Mogi, MPA. 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 Viva Mogi, MPA
It’s not parenting. (Or is it?) I’m annoyed when caregiving for an aging parent is described as parenting. By Lauren Klinger
When the Healthcare System Relies on Invisible Labor. The unseen coordination work that makes medical care possible. By Adrian Chung
The Problem with ‘Self Care’ On the individualization of systemic failures. By Anna De La Cruz
“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 Anna De La Cruz
“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
“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: 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 Dad Lives with Me
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 Lauren Klinger
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
What to Do When Your Loved One Refuses Help by Kirbie Earley
“You’ve tried to help. And they’ve told you, clearly, that they don’t need it.
This is one of the most common — and most frustrating — realities of early stage dementia caregiving. The person who needs help is often the last one to believe they need it.
Here’s what you need to know.”
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 Deb Liu
Shoulder, Strength, and the Quiet Courage to Face the Pain (Part 1 of 3) By Adrian Chung
“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
The Official Paperwork - Be aware, learn, and prepare with your loved ones
I used to think that getting the paperwork done so I could be a stronger advocate for my parents’ wishes was the main goal of this administration. Now I know it’s also about what would happen if something were to happen to me, the caregiver.
Legal documents and health directives differ by state, country and sometimes the hospital (in the UK). I highly recommend doing a little research for your person’s location.
Don’t forget to note any important medical intervention alert, e.g. specific issues with intubation or anaesthesia that were identified in a previous hospitalisation.
US: Living wills and advance directives for medical decisions incl. Physician orders for life-sustaining treatment (POLST). Author: Mayo Clinic
Articles and resources published by other caregivers:
Dementia Care: What to Do When They’re Losing Their Mind, So You Don’t Lose Yours Along the Way By Jodi Sh. Doff In this article Jodi has a section with links about “Getting the paperwork in order”, an excellent list for anyone who’s new to this paperwork!
A Legal Roadmap for Dementia Families The Documents We All Wish We’d Signed Sooner by Donna Chandler
"I wish we had done this while she could still understand what we were talking about." I've heard those words more times than I can count in my nursing career, and they break my heart every single time. Here's how to avoid being the family that waits too long.”
“Do this now: Health Care Surrogate Form .It’s so simple, I promise.” by Lauren Klinger. Lauren shares links to get the form for your relevant US state.
“This form empowers you to make health care decisions for your parent. If your parent ever wants to revoke it, that’s easy, too.
This is especially important if there are complicated family dynamics at play, like your mom only wants you to make health care decisions, but she lives with your Aunt Kathy, who can be pushy, or like your dad is estranged from your older brother but not you, or if your parents are married but one is experiencing signs of cognitive decline.”
Discuss emergencies, ‘what to do when…’ and end-of-life wishes
Most Emergency Plans Fail Elders Before The Disaster Even Starts by Amy K Williams contains several excellent points that are worth everyone working through! As I don’t live in the US, I hadn’t thought about tornadoes!
I’m always grateful for new ideas, learnings and tips! This makes sense for any caregiver where an emergency disrupts the care routine and our loved one’s welfare.
“Our plan wasn’t perfect. Your plan won’t be perfect either. But a plan beats luck every time.”
The Week Our Lives Fell Apart: Lessons from a Family Crisis Palliative Care, Social Work, Care Navigators and “The User Manual” By Saskia Siderow MPH
“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 Cindy Martindale
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 Lauren Klinger
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
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 Lauren Klinger
‘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 Patty Bee
“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.”
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 Sarah Coomber (US)
Should My Loved One Still Drive? Is it Time to Take the Keys? by Kirbie Earley (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 Lauren Klinger (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 Wendy Frew. (Australia) I highly recommend watching the videos. Put yourself in the shoes of the 80-year-old lady.
Giving up the driver’s seat by Tahia Sherebanou Fakhri
Conditions such as Alzheimer’s and dementia put the caretakers of the elderly in a very difficult position. First, the caretakers have to battle the resistance that comes from giving up driving. Secondly, they have to battle the fact that the patient forgets that their abilities are now compromised. Finally they have to battle the denial of resistance and the caretakers have to become the “bad guys” and forcefully enforce the “new rules”.
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 Adrian Chung
Discussing everyday finances, bills and banking
Bills & Essentials: Are the Lights Still On? Caregiving & Bills: Keeping the Essentials Paid Without Taking Over by Tina Dad Lives with Me
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 Dad Lives with Me
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 Lauren Klinger
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 Dad Lives with Me
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 Wendy Frew
Is Care Migration the Next Frontier? Or another bandaid for our broken care system? by Anna De La Cruz
The Staggering Costs of Elder Care in America My Experience with Medicaid, and Threats our Safety Net faces by Anna De La Cruz
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 Lauren Klinger
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 Amy Brown
Care support: orchestrating support at home
US-focused articles
Solutions to Two of Healthcare’s Most Intractable Problems: Caregiving Costs & Insurance Denials. The Advocates. Episode #2. Neal K. Shah. CareYaya & Counterforce Health AI By Helene M. Epstein and Neal K. Shah
What Are the Different Types of In-Home Care for Aging Parents? by Tina Dad Lives with Me
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 Kirbie Earley
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.
How do I get care support in the UK? Getting clear on care support, hospice and end of life care. By Victoria
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 Cindy Martindale
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 Kerri
“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 Jeanette Yates
“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 Jeanette Yates
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 Cindy Martindale
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 Sh. Doff 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 Jodi Sh. Doff
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 Kerri
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 GenX Caregiver
“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
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 Daniel Flora, MD
Palliative versus Hospice. What’s the difference? By Nicole | Palliative NP
Palliative Care Isn’t What You Think You don’t have to be dying, for one thing DeathReady with T.J.
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 Sue Montgomery, RN, BSN, MA
My Mother Was Dying… So Why Was She Still Being Kept Alive? The One Question That Finally Ended My Mother’s Suffering by Carol Hawkins
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 Edie Morgan. 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 Edie Morgan where she highlights Denise Napoli Long ‘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 Denise Napoli Long
“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 Denise Napoli Long
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
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
After your parent, family member, or friend has passed
UK information
Marie Curie PDF
US information
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 Kerri
Caregiving for your other parent
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 Jeanette Yates
“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 Carolyn Malone
“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.
Support organisations and book recommendations
This book list includes dementia and caregiving books
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Thx so much for your resources and care, Victoria. So valuable. Resonates so deeply. I care for my Mum the most in the family, and I can tell how much she is missing me bc others have stepped in while I am recuperating. That family dynamics piece = a real toughie🤕
Victoria, this truly is a caregiver's anthology that continues to grow and expand! You have done such an amazing job gathering all of this. It is saved so I know that I can always refer to it! Thank you!