Advice

Juggling responsibilities as a ‘sandwich carer’ of a person with dementia

We asked members of Dementia Support Forum and magazine readers for their advice about being a ‘sandwich carer’. 

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

Niki Evans-Ward says,

‘Lay out your boundaries – realistically, what can you do without compromising your wellbeing? It was only when I broke down that I realised I couldn’t do it anymore. 

Don’t overpromise, I always said to my mum I would keep her independent and at home as long as possible, but I never promised that we wouldn’t consider a care home.

Care homes shouldn’t be seen as the last resort. They can give respite and also can be a new lease of life.

Jessie5 says,

‘Someone said to me that 1) your kids come first 2) put on your own oxygen mask before anyone else’s – ie really take care of yourself because, if you burn out, you are no good to anyone.’ 

Joey35 says,

‘Practice self-care. I have reduced my hours at work to do my mum’s admin. So I now have an extra day off which allows me to also do nice things for myself, whether that is to go for a massage, go for a swim, see a friend, take the dog for a long walk – whatever I want to do for myself. This has made a really positive difference to my wellbeing. 

‘Take advantage of the benefits where possible. There might not be a lot to be thankful for, but my mum now gets a companion ticket for the theatre and lots of places give free access for blue badge holders (eg some National Trust sites). I’m enjoying this as much as possible while my mum is still well enough to have trips out.’ 

Purple rain 50 says,

‘I guess the only thing is to ask for help (and then take it!) 

I have a good friend who my son is happy to go with (he’s very attached to me!) so he hasn’t had to sit through all the hospital appointments. 

‘I recently told one of the other mums on the class Facebook page what we were dealing with and she was very supportive, offered to take my son out for days with her kids, which was kind of her. I haven’t taken her up on it yet (I’m really rubbish at asking for help!) 

‘I have to remind myself this isn’t for ever, I should appreciate Mum while she’s still around and mostly knows who I am, but it’s hard!’ 

Bineeta says,

‘I was looking after my dad who has late Alzheimer’s, my mum who has vascular and Alzheimer’s, and I had had a newborn. All on my own till May this year when Dad went into a care home. 

Mum is still with me and a now 10-month old baby is the only thing that has kept me going. Really scared for the future, and add a full-time job in there… 

‘Really not a good situation, but just got to get on with it and do the best I can. Take it day by day and stay calm. No point worrying as it will eat you up inside.’ 

Handcuffed says,

‘Setting yourself on fire won’t put someone else out. For every hour you spend fighting for broken bodies, brains and a truly broken care system, spend an hour on yourself. 

‘Look after you. You can’t love your “carees” any more if the stress of caring damages your health and wellbeing. It probably will.

It’s in everyone’s interests to stop that happening, so be firm and hard and do the right thing – look after yourself.’