This week, I have been mostly discussing elders care with my parents. Not that my parents need any, at least not this week, but, my grandmother does.
It is a minefield. It is challenging. It is emotionally exhausting. It is, however, imperative that we think about it, all of us, because, many things get forgotten. I am lucky, I spent a lot of time researching exactly this, and the national framework for elders support planning in the voluntary sector is based on my work. But there are things that everyone should remember when they need to have discussions about this with health care professionals, maybe when their older relative can’t do so much of the talking themselves.
What kind of person is the relative / person you are advocating for? (if they are being forced to act out of character, maybe alternatives need to be sought?) What help do they actually need? What help do they actually want? (these two can be very different, and the closer they can be made, the easier the journey will be) What would make their life better? What would make them happier?
Is there a reason that the health care professionals are talking to you, and not to them? It is not always necessary. It is useful to have a second in on the discussion, a back up, but, it is THEIR care, not yours. It needs to improve THEIR life, not yours. And, unless they really do lack capacity, why should they not make decisions about their care? If they can’t hear, this should be addressed with the staff, they need to communicate with the person concerned, not you just because it’s easier.
Is the older person usually stubborn and independent? Do they hate hospital, or the idea of care? Look for ways to fit their needs to their life. To the life they want? Don’t forget that a care package needs to address care NEEDS, but also needs to improve the life of the person being cared for. Maybe they DO need someone to home care for them. But, what do they WANT. Can they negotiate? Submit to having a need fulfilled, but gain something that *they* see as improving their life.
Don’t forget help is only helpful if the person receiving it FEELS like it is helpful. People give up if they are submitting to so many things they consider indignities, and never get anything that THEY feel improves their life.
Are they usually sociable? Why would they suddenly feel better not being so? Social needs need considering too.
Use the opportunity of a care package plan to address ALL their needs, health care, physical well being, mental health, nutritional health, aids and adaptations needed (and get a booklet, there are things to help with SO many things now, and they are not by any means all institutional), social wellbeing, EVERYTHING. There IS help in all these categories, be sure you have thought about THEIR needs (not just the minimum basic things you think they need) Don’t forget to ask them what they WISH they could do. What they would love to be able to do. There might be a way of achieving it that you haven’t thought of. Don’t just leave them with bare minimum care needs met. it’s depressing. How would you like it?
Be honest. Does the person live alone? If you visit twice a week, then YES THEY DO. You may do many things, but, how do they feel about that? How do they cope when you are not there? What would BETTER look like FOR THEM?
Don’t be scared to ask questions! Can they get an easy to use kettle? Can they do a MH assessment? Can they add a panic button to a private home? Probably. But not if you don’t ask.
Ask to be invited to review meetings. Get a phone number for the care team. Make sure they KNOW you are following up. Make sure they involve you if things change. Get back to them if things change, or if you think of something else that might be needed.
Think about what YOU would want, and remember, it’s not about making things easier for you, it’s about getting the best quality of life possible.