The PSP Decision Map

The questions I wish someone had handed my wife and me on the day of my diagnosis and it goes together with my recent post called “I’ve Just Been Diagnosed with PSP. What Do I Do Now?”

A living guide to the decisions patients and families face after a diagnosis of Progressive Supranuclear Palsy.

Ben Lazarus

benlazpsp.com

Version 1.1  ·  July 2026

Downloadable/Printable PDF –> The_PSP_Decision_Map_v1_1

 

Why this guide exists

Every family affected by PSP eventually discovers the same thing. The disease is not simply a series of symptoms. It is a series of decisions.

When should I stop driving? Should we move house? When is it time for a wheelchair? How do we talk to our children? What benefits should we apply for?

One of my comrades-in-arms in a PSP support group put it perfectly: almost every one of these decisions is made “on the fly.” No guide can answer them for every family – the answers differ by person, by family, and very much by country. But perhaps a guide can help you ask the questions before they become crises.

Each chapter covers one area of life and breaks its decisions into the four questions that hide inside every one of them: WHAT, WHEN, HOW, and WHO can help. A symbol next to each chapter tells you how far it travels:

🌍  Universal – the questions are broadly the same wherever you live (swallowing, falls, wheelchairs, relationships).

📍  Local system – the answers depend heavily on your country’s benefits, healthcare and legal systems, which is exactly why my answers may differ from yours.

This guide is not medical advice – I am a patient, not a professional, and you should always consult your own advisors. It is a collection of the questions my wife and I wish someone had encouraged us to think about earlier, drawn from six years of documenting this journey at benlazpsp.com.

 

 

Contents

🧭  The First Year   🌍

🦽  Mobility, Falls & Safety   🌍

🥣  Eating & Swallowing   🌍

🗣  Communication & Cognition   🌍

👁  Vision   🌍

👨‍⚕️  Medical Care   🌍

🏡  Home & Equipment   🌍

🤝  Care & Support   🌍 / 📍

❤️  Relationships   🌍

🚗  Driving & Work   📍

💷  Money & Legal   📍

🛁  Personal Care & Dignity   🌍

💙  Emotional Wellbeing   🌍

✈️  Travel & Occasions   🌍

🕊  Planning Ahead   📍

💭  I Wish I’d Asked…   🌍

 

 

🧭  The First Year  🌍

A reader asked the question this whole chapter grew from: how do you prioritise the first year between rehabilitation, life admin and the bucket list? I got the balance wrong at first – I fought the benefits war and the paperwork with consulting-partner intensity while my best walking months quietly ticked away. The first year is triage: three things compete for your best hours, all three matter, and nobody hands you the rota. Decide it deliberately, or the admin will decide it for you.

Decision	WHAT	WHEN	HOW	WHO
Priorities: rehab, admin, living 💬 Suggested by a reader	• What are the three buckets competing for my best hours – rehabilitation, life admin, and the bucket list – and what does each actually need from me this year? • What can only be done now, while function is at its best?	• When in the day and week does each bucket get my best energy? • When do we review the balance – quarterly, not annually?	• How do we stop the admin (benefits, legal, house) from eating the living time? • How do I forgive myself for the things that drop?	• Who takes admin off my plate so I can spend function on living? • Who holds me accountable to the bucket list, not just the to-do list?

Related sections:  → Money & Legal    → Emotional Wellbeing    → Travel & Occasions

 

 

🦽  Mobility, Falls & Safety  🌍

For me, mobility went in stages – cane, walker, electric wheelchair, manual wheelchair – and each stage arrived faster than I expected. The lesson I learned, sometimes the hard way, is that the aid is not the defeat; the fall is. My first day in the wheelchair was, to my genuine surprise, a happy one: a totally new perspective, and freedom regained rather than lost. These questions help you get ahead of each stage instead of being ambushed by it.

Decision	WHAT	WHEN	HOW	WHO
Walking aids (cane / walker)	• What type – folding cane, rollator, indoor-only walker – and what features matter?	• When do falls or freezing make an aid the wise choice? • When does the walker stop being enough – outdoors, then indoors?	• How do I get past the embarrassment of being seen with it?	• Who assesses me – physio, OT? • Who funds or lends equipment?
Wheelchairs	• What model and fit – and do I trial before buying? • What safety features (speed limiter, remote control for a carer)?	• When do I move from ‘sometimes’ to ‘default’ use? • When do changes in freezing or vision suggest it’s time to step back from driving an electric chair?	• How do I transfer in and out safely? • How do I make peace with each handover of freedom?	• Who measures and fits it properly? • Who pushes – and who trains them on kerbs and slopes?
Falls & freezing	• What is the plan when I freeze mid-movement or ‘power down’? • What do we tell paramedics about my baseline (door sheet)?	• When after a fall do we go to the ER vs. monitor at home? • When is it safer to leave the stairs behind?	• How do I learn to fall properly? • How do we make each room fall-safer (rails, clear floors, lighting)?	• Who teaches falling technique? • Who do we call first – family, carer, ambulance?
Exercise & physio	• What routine still works – stretches, yoga, adapted bike, seated work?	• When do I scale a routine down rather than push through?	• How do I adapt exercises I love rather than abandon them? • How do I balance guilt vs. rest?	• Who designs the programme – and who spots me so exercise isn’t itself a fall risk?

Related sections:  → Home & Equipment    → Medical Care    → Personal Care & Dignity

 

 

🥣  Eating & Swallowing  🌍

I have choked on a grape, a carrot, and – in one famous act of foolishness – a London bread roll eaten while walking, which cost me two weeks of coughing. Food used to be one of life’s great pleasures; now it is a discipline. But it can remain a pleasure if you take it seriously early, and the feeding tube conversation is far better held calmly over coffee than urgently in a hospital corridor.

Decision	WHAT	WHEN	HOW	WHO
Diet & choking risk	• What foods are now off the list (dry, crumbly, mixed textures)? • What is the choking emergency plan at the table?	• When do I move to soft food? Minced? Puréed? • When is it wiser not to eat unsupervised?	• How do I eat – pace, posture, no talking, full concentration? • How do we keep food a pleasure and not just a risk?	• Who assesses swallowing (FEES / speech therapist)? • Who at home is trained in choking first aid?
Drinking & thickeners	• What thickener, what consistency – and what about pills (crushed, with yoghurt)?	• When do thin liquids become unsafe – and when do we re-test?	• How do I keep hydration up when drinking is hard work?	• Who prescribes and reviews – speech therapist, dietician?
Feeding tube (PEG)	• What does a tube mean day-to-day – and what are my personal preferences?	• When is it sensible to begin discussing this, calmly and in good time? • When do weight loss or repeated aspiration make it worth revisiting?	• How do I record my wishes in advance (directive, POA)?	• Who advises – neurologist, gastro, dietician – and who would speak for my wishes if I couldn’t?

Related sections:  → Medical Care    → Planning Ahead    → Personal Care & Dignity

 

 

🗣  Communication & Cognition  🌍

“Sorry Ben, I can’t make out what you are saying” is a sentence I now hear regularly, and this entire guide is written by dictation because my hands gave up on typing long ago. The tools exist – but they must be set up while you can still learn them. And the decisions that need a clear head deserve to be made while the head is at its clearest. Mine, thankfully, still is – and I treat that as the most precious asset I have.

Decision	WHAT	WHEN	HOW	WHO
Speech & voice	• What exercises preserve the voice? • What is the backup when people can’t make out what I’m saying?	• When do I book speech therapy – early, not late?	• How do I pace conversations – shorter, slower, quieter rooms?	• Who explains to friends and family what actually helps?
Communication aids	• What tools – dictation software, picture board, audio, yes/no cards?	• When do I set these up – while I can still learn them comfortably?	• How do we agree signals for ‘pain’, ‘bathroom’, ‘reposition me’?	• Who sets up the tech – and who keeps checking I can still be heard?
Cognition & decisions	• What decisions would I like settled and written down while thinking is clearest?	• When is a good moment to share finances, passwords and admin?	• How do I keep the brain working – writing, chess, music, learning?	• Who do I trust to tell me honestly, and gently, when something slips?

Related sections:  → Planning Ahead    → I Wish I’d Asked…    → Relationships

 

 

👁  Vision  🌍

PSP is, at its heart, a disease of gaze – the ‘supranuclear palsy’ is the eyes. Mine no longer look down on command, my eyelids sometimes refuse to open without help, and I have gone from a lifetime of reading thrillers to audiobooks (goodbye Reacher, goodbye Jack Ryan). Vision changes quietly reshape everything else – stairs, eating, screens – so they deserve their own set of questions.

Decision	WHAT	WHEN	HOW	WHO
Vision changes	• What helps – prism glasses, drops, larger text, audiobooks? • What activities need extra care as gaze changes (stairs, pouring hot water)?	• When do eyelids that won’t open make Botox worth discussing? • When do I switch from print to other formats?	• How do we light the house to reduce risk and glare? • How do I manage light and noise sensitivity at gatherings?	• Who – a neuro-ophthalmologist or optician who knows PSP?

Related sections:  → Mobility, Falls & Safety    → Driving & Work    → Home & Equipment

 

 

👨‍⚕️  Medical Care  🌍

There is no treatment for PSP itself – an eerie silence where the pharmacy should be – which makes the team around you matter even more. My GP, neurologist, physio and therapists have been superb, each in their own lane. What I learned is that nobody is coordinating the lanes unless you do, and that a one-page ‘this is my baseline’ sheet can matter more in an ambulance than anything else you own.

Decision	WHAT	WHEN	HOW	WHO
Medical team	• What team do I need – neurologist, GP, physio, OT, speech, palliative – and what falls between them?	• When do I seek a second opinion? • When do I add palliative care (earlier than instinct says)?	• How do I prepare for each appointment – questions written, symptoms logged?	• Who is my ‘quarterback’? Who accompanies me to appointments?
Medication & treatments	• What is worth trying (levodopa trial, Botox, pain relief) – and what are we treating: the disease, or my quality of life?	• When do we stop a drug that isn’t working?	• How do we vet ‘miracle cures’ and well-meant suggestions without offence?	• Who reviews the whole list – interactions, timing, doses?
Trials & research	• What trials exist (e.g. clinicaltrials.gov) and what do they ask of me?	• When am I still eligible – windows can close as the disease moves?	• How do I weigh hope against burden, travel and risk?	• Who advises – neurologist and patient community, not the salesman?
Emergencies	• What is ‘normal for me’ vs. new – and what goes on the paramedic door sheet (bilingual if needed)?	• When do we call an ambulance vs. wait it out?	• How do we help hospital staff who’ve never seen PSP understand it fast?	• Who speaks for me in the ER? Who holds copies of the documents?

Related sections:  → Eating & Swallowing    → Money & Legal    → Planning Ahead

 

 

🏡  Home & Equipment  🌍

We renovated mid-disease – the hardest project of my career, and I once ran transformation programmes for a living – and we now own a small museum of equipment: the treadmill from the Parkinson’s era, two retired electric wheelchairs, a walker, and one shower chair that I would nominate among humanity’s greatest inventions. The lesson: the house must be ready for the person you will be in a year, not the person you are today, and not everything the catalogue offers deserves your money.

Decision	WHAT	WHEN	HOW	WHO
Renovate or move	• What does the house need – downstairs living, wet room, ramps, widened doors – for a year from now, not just today?	• When do we start – building works take longer than PSP allows? • When do we simply move downstairs?	• How do we fund it – and is any of it grant-aided?	• Who – an OT home assessment, and a contractor who has done accessibility work?
Equipment	• What is actually worth buying (shower chair: yes) vs. the growing pile?	• When do we buy ahead of need vs. in response to it?	• How do we borrow, rent, or buy second-hand – and pass on what we’ve outgrown?	• Who advises before we spend – OT, physio, patient groups?
Safety at home	• What routes are hazards – and what fixes them (rails, chairs at waypoints, call buttons within reach)?	• When does being alone at home need a rethink?	• How do we plan for local emergencies (shelter, power cuts)?	• Who checks on me when the family is out?

Related sections:  → Mobility, Falls & Safety    → Care & Support    → Money & Legal

 

 

🤝  Care & Support  🌍 / 📍

A carer at 50 was never in my plans – I dreaded it, fought it, and lost, exactly as I lost the argument with myself about the diapers. And like most people who finally take the step, I discovered the overwhelming majority are right: it transformed our home. What I had not understood until I lived it is the sheer volume of small requests a day of being cared for contains – and that the trigger for getting help is often not the patient’s need but the spouse’s exhaustion. The visa and permit side is heavily country-specific; start the paperwork months before you think you need it.

Decision	WHAT	WHEN	HOW	WHO
Getting a carer  📍	• What type – hours, live-in, agency vs. private – and what stays with family?	• When is the spouse’s load the trigger – not just the patient’s need? • When do we start the paperwork (it takes months)?	• How do we interview, build trust, and make our home a good place for them to work and live?	• Who handles visas/permits, contracts, vetting – and who covers days off?
The family & the primary carer	• What does each family member own – and what should the spouse be relieved of?	• When do we renegotiate roles as things change?	• How do patient and carer talk honestly – ‘how do we make this easier for each other?’	• Who supports the carer’s own health – respite, groups, counselling, friends?
If the carer needs care 💬 Suggested by a reader	• What happens if my spouse can no longer provide care – illness, surgery, sheer exhaustion – and may for a period need caring for themselves? • What would a temporary role-reversal or double-care household actually require?	• When do we plan for this – now, while it is still hypothetical? • When do we recognise the early signs of carer burnout or illness?	• How do we arrange emergency cover at short notice – family rota, agency respite, extra carer hours? • How do we protect the spouse’s own health check-ups from being endlessly postponed?	• Who is the named, briefed emergency substitute carer? • Who cares for the carer – their own GP, respite services, family?

Related sections:  → Relationships    → Home & Equipment    → Money & Legal

 

 

❤️  Relationships  🌍

I decided early to be open about my illness – first with Parkinson’s, then with PSP – and it has been one of my best decisions, though it is not the right one for everyone. Some friends stepped closer; a few drifted, mostly out of fear of saying the wrong thing rather than a lack of care. And the hardest skill of all, for a lifelong giver, has been learning to receive: to ask for help before I desperately need it, without the guilt.

Decision	WHAT	WHEN	HOW	WHO
Telling people	• What do I share – with community, online, at work – and what stays private?	• When do I tell friends – before they notice, or after? • When do I stop pretending everything is normal?	• How do I handle the first reactions – shock, pity, awkward silence?	• Who needs to hear it from me directly?
Children & grandchildren	• What do we tell the children – and how much do I tell grandchildren?	• When do we update them as things change – little and often, or at milestones?	• How do we answer honestly without frightening them? • How do I stay Dad first and patient second?	• Who helps us find the words – counsellor, teacher, faith leader?
When friends drift	• What is actually happening – usually fear and not knowing what to say, not a lack of caring?	• When do I reach out first – and when do I let a friendship rest without bitterness?	• How do I make it easy for friends to stay friends – tell them what helps? • How do I step back from crowds without causing offence?	• Who are my few – the ones I invest my limited energy in?
Asking for help	• What help do we actually want when people offer – a list ready to hand out?	• When do I ask for help before I desperately need it?	• How do I ask without guilt – remembering people genuinely want to give?	• Who coordinates offers of help so they land where needed?

 

💬 Questions from readers • When do I tell my grandchildren?

Related sections:  → Emotional Wellbeing    → Care & Support    → I Wish I’d Asked…

 

 

🚗  Driving & Work  📍

Losing the ability to drive is rarely about transport. For me it represented independence, identity and forty years of loving cars – and it hit harder than almost anything else. The same is true of work: my doctor recommended retirement, and it was one of the hardest and clearest decisions of my life. Thinking about both early allows the decision to remain yours rather than becoming someone else’s. The legal and pension mechanics are entirely country-specific – get local advice.

Decision	WHAT	WHEN	HOW	WHO
Driving	• What signs suggest it’s time to stop driving? • What are the legal reporting obligations once diagnosed?	• When is the right moment to decide this for myself, calmly and on my own terms?	• How do I grieve this one – it is bigger than logistics? • How do we replace the car – lifts, taxis, family rota?	• Who informs the licensing authority? Who takes over the errands?
Work & retirement	• What are my options – reduce, hand over, retire – and what happens to insurance and pension when I stop?	• When is the doctor’s advice the deciding vote? • When do I tell colleagues – and how much?	• How do I hand over well and end well? • How do I replace what work gave me – purpose, structure, people?	• Who advises on the financial mechanics of early retirement?

 

💬 Questions from readers • Should I sell my car before I stop driving?

Related sections:  → Vision    → Money & Legal    → Emotional Wellbeing

 

 

💷  Money & Legal  📍

I was spectacularly naive. I assumed a terminal diagnosis would cut through red tape; instead I assembled a small professional army – lawyers, accountant, social workers – and learned that systems respond to recognition, not severity, and that PSP is rarely recognised. When my benefits process began I was still running 5Ks; by the time it concluded I was in a wheelchair. Start immediately, get expert local help, and stay scrupulously honest – with a disease this unambiguous, the plain truth is more than sufficient.

Decision	WHAT	WHEN	HOW	WHO
Benefits & entitlements	• What am I entitled to – disability %, mobility, carer funding, tax relief – and is PSP even on my country’s list?	• When do I apply – immediately; the process is slower than the disease? • When do I appeal a wrong classification?	• How do I evidence my real condition honestly – and stay ahead of the process rather than react to it?	• Who – a benefits lawyer/advocate who knows the local system, with the neurologist and GP as advocates?
Financial planning	• What is the new plan – income gone, care costs rising, timeline uncertain – and what insurance still stands?	• When do we redo the budget and projections – and re-redo them?	• How do we adjust savings and pensions – and talk about money as a family without panic?	• Who – an independent adviser who has seen degenerative illness before?
Legal documents	• What documents – will, power of attorney, advance directives, end-of-life forms – and what do vague terms in them (stages, triggers) actually mean?	• When – early, while capacity is beyond question – and when do we review them?	• How do we file them so hospitals actually see them in an emergency?	• Who – solicitor plus doctor sign-off – and who holds copies?

Related sections:  → Planning Ahead    → Care & Support    → Driving & Work

 

 

🛁  Personal Care & Dignity  🌍

The hardest post I ever published was about ordering adult diapers at fifty. I share that here for one reason: acting ahead of the challenge, rather than after it, turned a humiliation into a decision – my decision. Dignity with PSP is not about avoiding help; it is about defining, out loud and in advance, what dignity means to you, so the people helping you can protect it.

Decision	WHAT	WHEN	HOW	WHO
Continence	• What products – protective underwear vs. full products, day vs. night – and what are the bathroom logistics as transfers slow?	• When do I act ahead of the challenge rather than after it?	• How do I get past the embarrassment – and buy discreetly (online)?	• Who helps – continence nurse, GP, urologist for the medication side?
Washing & dressing	• What can I still do myself – and what is now safely assisted?	• When do I welcome help with the private routines – ideally before an accident forces it?	• How do we protect dignity while accepting help – preferences, routine, humour?	• Who assists – spouse or carer – and what does each side prefer?
Red lines	• What are my personal red lines – and what matters most that must be protected to the end?	• When do I revisit a red line – as a decision, not a defeat?	• How do I tell my family what dignity means to me, specifically?	• Who will hold to my wishes when I can’t voice them?

Related sections:  → Care & Support    → Planning Ahead    → Emotional Wellbeing

 

 

💙  Emotional Wellbeing  🌍

Depression touches a majority of people with PSP, and I understand exactly why – I have had my funks, my anger over trousers that wouldn’t cooperate, and my anticipatory grief, which is real and arrives uninvited. What has held me together is a mixture of faith, family, dark humour, writing at 2am, and refusing both denial and toxic positivity. Staying positive is hard work and takes effort – but it is worth it, and asking for professional help is strength, not surrender.

Decision	WHAT	WHEN	HOW	WHO
Mental health	• What support – therapy, counselling, breathing work for panic and anxiety?	• When is a low mood a funk – and when is it worth asking for help (PSP rates are high)?	• How do I stay positive without toxic positivity or denial? • How do I handle anger, guilt, and the ‘why me’?	• Who – therapist, support group, faith leader, honest friend?
Meaning & purpose	• What replaces career as the engine – writing, faith, advocacy, family, projects?	• When do I start the projects that matter – while energy and voice are strongest?	• How do I structure days so time drags less and counts more?	• Who joins me in the projects – my reader, editor, partner?
Support groups	• What groups fit – Facebook PSP groups, HealthUnlocked, local charities?	• When do I lurk, when do I post, when do I answer others?	• How do I filter well-meant but contradictory advice?	• Who in the groups becomes a real comrade-in-arms?

Related sections:  → Relationships    → I Wish I’d Asked…    → Planning Ahead

 

 

✈️  Travel & Occasions  🌍

One of the hardest decisions of my life was cancelling a weekend in the South of France the night before the flight – packed, excited, and finally honest with myself that I couldn’t manage it. And one of the best weeks of my life came months later: my daughter’s wedding, which nothing could stop, planned around what I could do rather than what I couldn’t. Both are true at once. That is travel with PSP.

Decision	WHAT	WHEN	HOW	WHO
Trips	• What is still feasible – one night away, accessible hotel, no flights – and what must be packed (meds, equipment, doctor’s letter)?	• When do I cancel – and how do I make peace with cancelling? • When is the window for the trip that matters most?	• How do we plan for bathrooms, distances, heat and rest – and how does travel insurance work post-diagnosis?	• Who travels with me – and can they physically manage alone?
Family occasions	• What role can I play – father of the bride, prayers, speeches – and what adaptations make it possible?	• When do I arrive and leave to be at my best for the moments that matter?	• How do we design the event around me without it being about me – including a quiet exit plan?	• Who is my minder for the evening – discreetly?

Related sections:  → Mobility, Falls & Safety    → Relationships    → Emotional Wellbeing

 

 

🕊  Planning Ahead  📍

In the support groups, one answer to “what do I need to know?” comes up daily: plan early, and the relief starts immediately. Planning for the end at fifty feels absurd – the absurdity is where the dark humour lives – but the window to express your wishes is real, and missing it leaves the people you love guessing under the worst possible conditions. Do it, file it, brief the family – and then set it aside and get back to living. The forms are country-specific; the conversation is universal.

Decision	WHAT	WHEN	HOW	WHO
Wishes & directives	• What treatments would I want – or prefer to decline – and what religious or cultural requirements must be written down?	• When is it sensible to begin these conversations – early, while it is a discussion and not a crisis?	• How do I make wishes findable – forms filed, family briefed, copies everywhere?	• Who would decide on my behalf – named, agreed, and willing?
Place of care	• What are the options – home, hospice, hospital – and what does each really involve for the family?	• When do we involve hospice and palliative services – earlier than it feels natural?	• How do we prepare the home if home is the answer?	• Who coordinates – palliative team, GP, family lead?
When plans go astray 💬 Suggested by a reader	• What if the plan’s key people can’t play their part – a spouse who was meant to outlive me, an attorney, executor or medical proxy who becomes seriously ill themselves? • What is the backup for each named role?	• When do we name substitutes – at signing, not at crisis? • When do we re-check the whole plan after any major change in the family’s health?	• How do we build a Plan B into every document – alternate attorneys, successor executors, second proxies? • How do we make sure the substitutes actually know the wishes, not just the lawyer?	• Who is the agreed backup for each role – and have they said yes? • Who reviews the arrangement when circumstances change?
The before-list	• What do I still want to do, watch, hear and say – written as an actual list?	• When do I have the family conversations – on my terms, in good time?	• How do I balance planning with living – logistics must not eat the time?	• Who do I want around me – and who will make sure of it?

Related sections:  → Money & Legal    → I Wish I’d Asked…    → Medical Care

 

 

💭  I Wish I’d Asked…  🌍

This last chapter is different. These are not medical decisions – they are the emotional ones, the questions nobody puts on a clinic checklist and nobody thinks to ask until the window has narrowed. They are the ones I most wish someone had put in front of my wife and me earlier. Read them slowly.

Decision	WHAT	WHEN	HOW	WHO
Voice & memory-keeping	• What do I want future generations to hear in my own voice – stories, blessings, the ordinary things?	• When do I record my own voice – while it is still unmistakably mine? • When do I make the videos for grandchildren – born and not yet born?	• How do I start when it feels morbid – one short recording, not a production?	• Who helps me record, edit and store them safely?
Dropping the mask	• What am I still pretending I can do – and what is that costing me and everyone else?	• When do I stop pretending everything is normal?	• How do I let people see the real picture – gradually, and on my terms?	• Who gets the unfiltered version?
Acting before the crisis	• What help will I need in six months that I could arrange calmly today?	• When do I ask for help before I desperately need it – the carer, the equipment, the paperwork?	• How do I get comfortable acting ahead of need instead of after crisis?	• Who is my early-warning system – the person allowed to say ‘it’s time’?
The practical handover	• What only I know – passwords, where things are, how things work, who to call?	• When do I simplify my passwords and write the ‘how our life works’ document?	• How do I hand over without feeling I am handing myself over?	• Who receives it – and have they actually tested that it works?
Saying it now	• What do I want to say to the people I love – thanks, apologies, pride, blessings?	• When? Now. There is no better window than this one.	• How – a letter, a conversation, a blog post, a birthday card that means the most?	• Who is on the list – and who have I been putting off?

Related sections:  → Relationships    → Planning Ahead    → Emotional Wellbeing

 

 

One final thought

I wish someone had given me this guide.

Not because it would have answered every question. It wouldn’t. Many of these decisions have no right answer – only the answer that is right for your family, in your country, at your moment.

But it would have helped my wife and me recognise the crossroads before we reached them – and with a disease that moves this fast, a few weeks of warning is worth a great deal.

If this guide helps even one family ask a difficult question a little earlier, then it has already done more than I ever hoped.

And now, my ask of you. This guide is deliberately unfinished – and it is already working. The first reader contributions have arrived, and you will find them marked 💬 throughout: an entire chapter on prioritising the first year, and the hard questions of what happens when the plan’s key people – including the carer – need caring for themselves. What decision blindsided you? What question do you wish someone had put in front of you earlier? Send it to me through benlazpsp.com – credited or anonymous, as you prefer – and it will join the next version.

Together, perhaps we can build the guide that none of us had on the day we needed it most.

Ben