Practical things:
Where will he be cared for? How can companions ensure he has company when he wishes, time to rest, help to move around? Support for his dearest people? Help with laundry, shopping, meals?
Make a list of jobs.
Write rotas.
People want to help but don't know how.
Where will he be cared for? How can companions ensure he has company when he wishes, time to rest, help to move around? Support for his dearest people? Help with laundry, shopping, meals?
Make a list of jobs.
Write rotas.
People want to help but don't know how.
Plan ahead things:
Does he have a named person as his Health Attorney in case he can't speak for himself some days?
Takes a few days to get all the signatures & register the form: gov.uk/government/pub…
Does he have a named person as his Health Attorney in case he can't speak for himself some days?
Takes a few days to get all the signatures & register the form: gov.uk/government/pub…
If Attorney looks too complicated, simply talk together so everybody understands his wishes. Preferred place to be looked after? Constant company or lots of time alone? TV/radio/music on or off? As awake as possible or as sleepy as possible? Write it down so it's clear and...
... show the statement of wishes and preferences to all professionals involved so there's a clear understanding.
You can make this more formal using ADRT and DNACPR documents (see below).
You can make this more formal using ADRT and DNACPR documents (see below).
Important point: if natural dying is taking place, he needs a document that prevents healthcare staff from giving CPR once death has happened. Although this is utterly ridiculous, please avoid this complication for him & all of you - ensure there's a DNACPR form & ADRT (more ⬇️)
Advance Decision to Avoid Treatment is a legally binding statement of treatments a person refuses: might be cardiac resuscitation after natural dying, or avoiding particular interventions like blood transfusions or tube feeding.
Good guidance at @AGoodDeath website.
Good guidance at @AGoodDeath website.
Do Not Attempt CardioPulmonary Resuscitation DNACPR: short document to show staff/ ambulance crews in a crisis. It supports an ADRT that declines CPR. His GP or hospital team can provide it. Keep it where everyone can find it at home*; in notes in hospital.
*fridge door on magnet
*fridge door on magnet
Medical things: get good symptom management as early as possible. For your brother, this might include management of breathlessness, cough, pain.
Get a written plan of what to do if symptoms become troublesome: what to give him, who to call.
Have 'in case of need' meds in house.
Get a written plan of what to do if symptoms become troublesome: what to give him, who to call.
Have 'in case of need' meds in house.
Ask GP or pall care team to make an Emergency Health Care Plan so out-of-hours GP or paramedics can carry on the current plan of care instead of diverting him into hospital, especially if he wants to stay at home. Ask them to explain the emergency plan to you all, too.
Don't be afraid of morphine. It's safe & useful for pain and for breathlessness. The right dose will balance out the symptoms without causing lots of drowsiness although it may take a couple of days to find the balance.
Bowels: it's hard to strain to move bowels when you're short of breath. Don't let him get constipated in the first place. Keep up fluids (anything he enjoys). If morphine is used, start laxatives the same day & use daily. It constipates everybody!
What to say: people get tongue-tied around their beloved dying person. He's still your bro. It's ok to chatter. It's fine to just sit & watch TV together. You could read a book & have companionable silence.
If there are things you want to say, ask him if you may. Then say them.
If there are things you want to say, ask him if you may. Then say them.
Common conversations towards the end of life:
Thank you.
I'm sorry.
I forgive you.
I wish...
I love you.
Give him private time with visitors for intimate conversations. We never know when these important conversations are necessary.
Thank you.
I'm sorry.
I forgive you.
I wish...
I love you.
Give him private time with visitors for intimate conversations. We never know when these important conversations are necessary.
Emotional care: it's normal to be sad, afraid, angry, grumpy, relieved, impatient & even happy from time to time.
It's not normal to be stuck in any of those emotional states. If depression or anxiety are undermining enjoyment of living, ask GP/pall care team for help.
It's not normal to be stuck in any of those emotional states. If depression or anxiety are undermining enjoyment of living, ask GP/pall care team for help.
Keeping people informed can be exhausting. Appoint a family comms lead who can make a WhatsApp group or an on-line update site. Google them, there are lots to choose from.
Tell people when you welcome visits & when to give him quiet time.
Have a front door Don't Disturb sign.
Tell people when you welcome visits & when to give him quiet time.
Have a front door Don't Disturb sign.
Doing the dying: it's surprisingly gentle and simple towards the end. Here's a 4-minute description: bbc.com/ideas/videos/d…
Children: let them visit. Encourage them to ask questions. Give them clear, factual answers. Show them it's ok to be sad. And to still be happy about things.
Ensure their schools know what is happening at home.
Good resources at @cbukhelp @winstonswish
Ensure their schools know what is happening at home.
Good resources at @cbukhelp @winstonswish
Spiritual care: people may have spiritual, religious or non-religious but existential concerns. They may feel awkward to mention this. Ask. Remember chaplains have huge experience & won't 'push' religion; they can be v helpful in contemplating the void.
I hope your brother will have peace of mind, good company, and excellent control of any symptoms.
Wishing you well for this sad, important time together.
Wishing you well for this sad, important time together.
