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Caring for an older family member with learning disabilities
Caring for an older family member with learning disabilities

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1 Hearing from those who know

While generic advice about health and wellbeing is useful, hearing what someone else in a similar situation to you finds works for them can be invaluable.

Activity 1 Advice about looking after yourself

Timing: Allow 10 minutes

In this video Gail draws on her own experiences of caring and of working with many family carers of older people with learning disabilities to reflect on what might help carers to look after themselves. Make some notes if you wish.

Download this video clip.Video player: gopa_1_session5_video1gail.mp4
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Transcript

GAIL:
Make sure that you are getting all the support that you are legally entitled to for your son or daughter, so you can have a proper break. And that is particularly important as you get older, that you can legitimately go back to social care at any time and say we are not getting enough support. We need more.
Just because he goes to day service a couple of days a week or all week even, what happens at the weekend? Are you in your 80s and still doing personal care for somebody or turning them in the night if they are profoundly-- all of those things that might be your-- or just having to be there. I meet parents who have to be there when the bus arrives back or the taxi comes back from day service at 2:30 in the afternoon. And that’s it. They can’t go anywhere for the rest of the day. That takes its toll.
You are legitimately entitled to more help than that if you are older. So make sure, again, the knowing your rights stuff. Know that is the case. And ask for more help. It is not a failure to ask for more help. It is not something-- there is nothing that says you, as a parent, have to do this all on your own. I remember some really good advice from a social worker actually way back who said to me when I said I felt like a failure about caring for my son. You’re not a failure, Gail. No one could do it on their own.
And that is so true, particularly as you get older. I am in awe of some of the older carers that I meet who were still working almost 24/7 supporting their son or daughter. They can’t leave the house, and they’ve done that for 50 years and don’t think they’re entitled to help. So you are entitled to help, so go and ask for it, I think.
And also, I suppose, so it’s your mental health, physical health you need a break, but your mental health, again, it’s back to finding your tribe, finding other parents, finding other people to offload to, to talk to. We all need that. We all need to do that. I need that. I don’t care for my son every day now. But sometimes, you just need to offload. And I think that’s really helpful and have some fun. And if it’s cheese and wine or prosecco or whatever occasionally with a few friends, then that’s the thing that you can do.
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Comment

Gail emphasises knowing what your rights are, having a break from caring, having someone to offload to and giving yourself permission to be selfish. You will probably also already be aware of the importance of eating a healthy balanced diet, getting enough sleep and exercise. Another point you might have picked up is that self-care can be practiced in many ways. Some of the ways might be fairly quick and easy – taking a minute here or there to relax, engaging in a mindfulness activity or exercise, noticing the sounds around you and in taking a short break from the busy world we live in. Choose which works best for you and do not forget to use it!

It is important to know resources about self-care that are available to you. Some examples are set out below: