3 Some of the realities of planning future care
This session would not be complete without thinking about those situations where the person with learning difficulties does not want to move out.
Activity 4 Understanding and coping with reluctance
Watch the two short videos below. These are reflections on personal experiences and are also relevant to Becky’s situation. In the first video Gail reflects on her own experiences and in the second Dawn and Pam make some suggestions about what might help during conversations about future care. Make some notes if you wish.
Transcript
Transcript
LISA: Sometimes, the opinions of the person and the opinions of the family of what’s going to happen-- they might not be the same. So I’m just wondering, how can they support? How can other family carers support when those sort of things happen?
PAM: It should be up to the person what they want, not what everyone else wants.
LISA: Yeah, no-- very, very true. What do you think there, Dawn?
DAWN: Another thing-- if they’re non-verbal, pictures, or words, or--
LISA: Oh. So you’re thinking about how they could have a good conversation with the person to work out what they really want?
DAWN: Yeah, because they’ve got be happy where they’re living, haven’t they?
LISA: They do. They definitely do. And I think it’s really important for everyone’s opinions to be listened to and be thought about. But I think the end decision-- sometimes it has to be like one of those best interest decisions. Obviously, they take into thought of everyone’s opinions, especially that person. So I think it’s important for them to do that. But really have those conversations and get as much information as you can from them. It’s really important there, Dawn.
DAWN: And I think that’s why they should do it earlier because later on in life, they probably won’t have the capacity to say anything.
LISA: Possibly, yeah, especially when we were talking about dementia, Alzheimer’s, and things like that. It can make it really difficult to have those conversations. So do it when you’re young, when you’re healthy, if you can, because sometimes people might not be able to until it’s--
PAM: Plus, it’s not an easy thing to talk about.
DAWN: No, it’s not.
LISA: No, I know.
PAM: Uncomfortable.
LISA: Well, I guess, having those conversations-- what kind of person would you want to have to have those conversations with?
PAM: Family.
DAWN: Yeah, yeah.
LISA: Yeah, for those who are close with you, yeah? And--
DAWN: Doctors.
LISA: Doctors, yeah? And how would you want that doctor to be like?
DAWN: Nice and friendly.
LISA: Nice and friendly, of course.
PAM: And supportive.
DAWN: Supportive, yeah.
LISA: And supportive. And you want them to really know you and also maybe for you to really know them as well because, yeah, as you said-- it’s really awkward to have those conversations, especially when you don’t know the person you’re talking with. Definitely. But I think at the end of the day, you also-- when you have those chats-- you really want them to be on your side, if you know what I mean, to really listen to you and what you want, definitely. Thanks for that, guys.
So also thinking a little bit more about when someone finds it difficult to have conversations, how can families and professionals really talk to them and make those decisions? So you talked a little bit about it, Dawn.
PAM: Be calm.
DAWN: Yeah. And use pictures or, yeah, things that they-- yeah, pictures. Picture bank or--
LISA: Picture bank? So things on the table--
DAWN: Symbols, yeah.
LISA: So there’s lots of communication tools. So there’s talking mats. I know there’s a few things that the Growing Older Planning Ahead Project are creating to help, I think, have some of those conversations-- like picture cards and some questions people can think about. And I think it really-- we also need to think about people’s body language, I think-- don’t you-- when thinking about those things. But talking-- do you think they’d also might need to talk with other people who’s close to that person to really work out what they want or need?
DAWN: Yeah, like their family if they’re still around.
LISA: And who else might they need to talk to? Or who else could they talk to?
DAWN: Social worker?
LISA: Social worker-- I think social workers can be quite close to people, definitely. Who else might be really close to that person and might know what they want?
PAM: The sister or brother, if they’ve got one.
LISA: Yeah? Yeah, really, really close family or friends, as well.
PAM: Yeah, friends. Yeah.
LISA: Yeah, especially when other people might have passed away. And they might have really close support staff members who’ve worked with them for a really long time and really know them that could also help with that. So definitely trying to talk with the person and trying to use different communication tools to talk with them. You’re not able to get all the information you need, you can then talk to all these other people. I think by the sounds of it, talk to the family first. Then, friends. And then, professionals who are really close to them, I think is the thing. And then, you can make a really good decision for that person.
PAM: Yeah.
DAWN: Definitely.
Comment
Gail talks about some of the reasons why someone may not want to move from the family home to alternative accommodation – some of which are emotionally complex and involve fear. She stresses the importance of starting planning early allowing plenty of time to understand any reluctance and working through concerns sensitively.
Dawn and Pam emphasise listening to family members and suggest using pictures, communication tools as well as involving trusted professionals and friends to help during discussions that take place.
These are all points which are worth building into your ‘Tips’.