patient refusing to have help from anyone other than carer

managing the patient who is frightened to be alone without the carer even for short periods for example, to visit own GP

dealing with not being able to get out because patient cannot be left

getting away from the ‘unfairness’ of MND

feeling that they should be there and doing things 24/7 particularly if a spouse/partner as well as a carer

thinking it is legitimate to get a break (carers tend not to think about a break for themselves)

getting a few hours in the week to do a range of necessary tasks: food shopping, going to bank, going to post office, changing library books, getting housework done, attending appointments

dealing with healthcare professionals who consider that carers need time, not for self, but only to go to post office, buy food

having some time just for themselves/what they want to do: carers talked about doing something relaxing, being able to unwind, something for their own health/fitness, to go driving as a stress release, going for a coffee, going for a walk, meeting a friend, doing some voluntary work

about services locally that would provide a break for the carer

advance booking of short period of respite, for example, through MNDA

specific breaks from health and care services/charities: care-team provided via local authority personal budget, professional carers from an early stage to build a relationship with the patient and confidence to be left with them, sitters for some respite hours from charity or from hospice, team providing set hours per week for personal care for the patient

family help (family events providing a break because more people around to help, direct care help from family members, though carers often reluctant to accept)

private care teams (at a cost to the patient and carer): agency sitting services; private care team two afternoons a week

when patient attending hospice or day services

during District Nurse (DN) team visits to the patient—potential cover for the carer to go out

reliance on friends/neighbours to sit with patient

by having Macmillan Transport to take patient to hospice appointments

in the late evening when patient is safely in bed

in the early morning before the patient is up

being up several times during the night because caring involves helping with toileting, managing falls, turning the patient in bed, listening out for the patient

difficulty of raising need for a break in front of the patient

feelings about respite (eg, guilt about wanting respite, ambivalence/ reluctance to leave patient, knowing that patient prefers carer to do overnight care, having night respite available but patient not wanting it)

being able to ‘let go’ when care worker is providing respite

availability of respite services

night care in the patient’s own home (arranged by Macmillan, care worker from the hospice, by family members/shared care overnight, by private arrangement)

patient admission for a period of respite: to hospital or hospice

joint patient and carer break at a respite centre where patient needs met by centre staff overnight as well as in the daytime

a holiday break with time in the day for the carer to catch up on sleep

physical effects of caring, through providing overnight care: fatigue and tiredness due to lack of sleep; weight loss

direct impact of lifting patients: back problems, bad shoulder, hernias

understanding the impact of caring on carer from the start

knowing who to talk to about physical effects from the stress of caring role

carer’s own health problems: high blood pressure, illnesses/injuries/symptoms experienced

loss/lack of time for physical exercise

tiredness from doing both caring and working

someone to look after patient to give carer time to do exercise/go for a walk

a person to look after patient to allow carer to go to hospital for treatment

physical therapy sessions delivered in the home as carer unable to leave the patient for time to attend clinic

prescribed medication for health problems

strengthening exercises at a gym to help with lifting the patient when he falls (because no other help offered)

applying for benefits /allowances (eg, understanding which benefits carers are entitled to, feeling confused by online information, dealing with social security phone lines, the lack of awareness of people on phone lines about MND, the costs of ringing benefit lines, being given incorrect advice, completing the lengthy claim forms, persistence in making claims)

dealing with loss of income (eg, when patient unable to continue to work, when carer has to give up working, when managing on a reduced income)

getting help with extra costs because of the illness: heating; prescriptions; prescription exemptions

lengthy waiting period for assessment for financial assistance with bathroom adaptations (leaving patient unable to shower)

on entitlements/benefits available from hospital, telephone helpline, Age UK, social workers, MNDA carers’ voluntary group, Citizen’s Advice Bureau

on working rights

reduction in council tax if house adapted for MND

free car tax

no Value Added Tax (VAT) on equipment to manage MND

MNDA grant for adaptations to home

MNDA grants for carers

reduced price cinema and theatre tickets for carers accompanying patient

wills and power of attorney on MNDA website about

help to complete application for financial assistance, from Age UK, family members

reduced working hours enabled by employer/supportive line manager

part time working and flexible working from home supported by employer

completion of a will at home by solicitor

fitting in all the household tasks while caring including washing, ironing, cleaning, shopping, preparing meals

garden work as patient becomes less able to do it

practicalities of getting to hospital appointments

patient’s refusal to have anyone in the home to help the carer

cost of having a cleaner to provide some help in the home

accepting help offered/provided

family sharing some of the duties like cleaning, ironing and shopping

help with garden from friends/family

paid help: in the home; in the garden

GP signing carer off sick from work when struggling to manage—to give time to do practical tasks

having a ‘blue badge’ to help with parking

carers’ own specific feelings and worries: (eg, guilt—if carer gets irritable with the patient or for wanting help for self as a carer when the patient has the illness, having to put on a ‘front’ of coping because the patient needs to see carer as dealing with things, anxiety about new symptoms of progression of the illness, fear of what lies ahead with the illness, sadness at patient’s deterioration, isolation and mental health issues, grieving which began at diagnosis, worry about becoming ill themselves while caregiving)

patients’ reaction to the illness which impacts carers’ own mental health (eg, patient not wanting to tell family how he is—carer has the load on his/her own, denial by the patient, too much openness by the patient in discussions about dying causing carer distress)

knowing who to go to for help with feelings

someone to talk to (soon after diagnosis, from the medical team to talk with the carer alone about how they were managing MND as a couple, at a regular appointment following referral—an hour of talking, in the middle of the night when frightened—a helpline, someone to call the carer regularly—to just listen)

getting out to do gym sessions

medications for anxiety/depression

to more specific mental health input where needed

dealing with the effect of disease on personal beliefs, including challenges to those beliefs

understanding issues and feelings around assisted dying

about Dignitas (where requested by the carer)

an offer to talk about beliefs, in privacy

time to talk when carer ready