Advice

‘Am I still a carer?’

We asked members of Talking Point and magazine readers about changes in your identity and role if you usually support a relative or friend with dementia but they’re now cared for elsewhere. 

Talking Point is a helpful community that’s free and open 24/7, where anyone who’s affected by dementia can get valuable support online.

SAP says,

‘My mum is in a care home and I still very much identify as a carer. I’m responsible for her finances and wellbeing but I am also the keeper of her memories. 

‘I am the one who can tell the staff what she likes, what she means, her life experiences. I am the one who knows what care decisions she would want to make when the time comes. 

‘The physical aspect of caring may not be present but the emotional one never leaves.’

Sarasa says,

‘At first, I was quite surprised at just how much caring still goes on when someone moves into care.

‘As Mum’s attorney I’m still managing her finances, I’m the person the care home asks when vaccination times come round, and like SAP I’m there telling them all what Mum likes and dislikes.’

MaNaAk says,

‘When Dad went into his care home, I became a long distance carer.

‘I still took him to some appointments and outings and looked after his finances. I also topped up his toiletries, sugar-free treats, clothes and other items.’

imthedaughter says,

‘Organising someone’s life for them even when in care is still a lot of work!

‘Making sure it’s going well at the home, visiting, ensuring they are comfortable with clean, new, suitable clothing as things change, organising toiletries and so on… Yes, you’re definitely still a carer!’ 

 Elkie B says,

‘It was so hard handing over my much-loved husband into someone else’s care. I had provided 24-hour care for him for six years. 

‘Am I still his carer? Very much so!

‘I oversee his daily care in a system that pays minimum wage to carers who work long hours and do not have the time to give my husband the care he needs. I spend three to four hours a day there, catching up with my own life at weekends to give myself a break. 

‘The hardest thing to accept is that I’m no longer in control of his care.’ 

Gabby in London says,

‘I still think of myself as my husband’s main carer. It brings me great joy to be with him as much as possible. I can do all those things I used to, that augment the care he receives at the care home. 

‘The managers and staff have accepted my frequent and quite long visiting patterns – though I think they might prefer it if I took more time away! 

‘It’s no easy task for me, letting go. Perhaps this may become easier over time.’  

Sammy@52 says,

‘I’ve cared for my sister and her husband for a few years. Both have dementia. They’ve now moved to a care home five minutes away. 

‘I’m no longer their only carer but I’m still involved in their care planning. After all, I’ve known them all my life and the care home have only known them for a few months.

‘I now know they’re somewhere safe and will get help from professionals when needed.’