NEWS

My experiences

I haven’t thought about growing older really but what I do know is that I have made a will already which is a good start. I do need to plan what I would like to do for when I grow older.

I know deep down that I wouldn’t like to be looked after at home, I would like to be somewhere where I can be with people that are paid to look after me and knowing that I can receive proper care and support while I am growing older in a relaxed environment.

I would like to talk things through properly with the people around me like my family and my friends and support too to go through this, as this is a difficult topic to bring up and will take some careful planning.

I know I will die at some point and that goes without saying but having to plan for this is incredibly hard for me but at some point in time this has to be talked about.

I do find this subject difficult to talk about but these things do need to be talked about. Although it can be tough we need to be realistic.

I interviewed Andy Schwab and Eunice Williams to ask them their thoughts about growing older. Andy works at St Richards Hospice and Eunice is in her seventies and kindly shared her personal experiences of growing older

Andy told me: growing older means having wisdom, enjoying the contributions you’ve made and enjoying watching my daughter and nieces grow up and turn into people I like spending time with.

How important is it to plan for growing older?

Andy said: Essential, be it preparing financially for a funeral, making clear what your wishes are for after you’ve died or preparing for retirement. Growing old is the same as anything else, the more you prepare the more successful you will be. Have an idea of what you want and what this looks like.

Eunice

Eunice is 77 years old and she loves swimming and gardening. Eunice has arthritis and she finds gardening a bit harder every year. Eunice swims and that makes her feel fitter although she has now slowed down lots.

Eunice feels that she has to be sensible with walking and driving her car.

How does growing older affect people with learning disabilities differently?

My thoughts: People with learning disabilities tend to be affected by this differently and each person will see things differently too. It’s important to make things more understandable so they can be talked about better.

Andy said: Well for a start it can be a lot harder for people with learning disabilities, not because of your disability, but because most of society’s services, paperwork and processes are aimed at people without learning disabilities.

Eunice said: When children are younger their parents should talk to them about different things that happen when they are growing older, their parents need to plan if their child needs more support as they get older.

How can we support people to make their own choices and decisions when planning for growing older?

My thoughts: I would recommend getting in touch with an organisation like McIntyre. They’re running a project called Dying to Talk, that’s more aimed at planning for death, they have lots of resources that support people with learning disabilities to make decisions and communicate them.

They have an awful lot of expertise and knowledge in this area. I’m working very closely with them in my role at St Richards Hospice to ensure we are doing everything we can to empower people with learning disabilities to make decisions about their lives and communicate them. Click here for more information.

Can you explain in your own words how you can prepare for getting older and all that it brings?

My thoughts: There are a number of things to prepare for getting older as everything has to be thought about and planned properly with the person, for example in making a will, planning what they would like to happen when they are old and looking towards the care and support they would need to be able to continue to have a future so they can be happy. That is what it is all about.

Andy said: I think you need to learn to control the things we can and accept the things that cannot be changed. Ageing and dying are unavoidable, but making choices about how we do them are well within our power.

Andy said: I would also speak to your GP about completing a RESPECT form. This will ensure that as you get older, if you are ever not well enough to make decisions for yourself, your family and loved ones will know what choices you made.

I’d also recommend having a look at My Life My Choice, this is a website that supports people to make choices about what they would like some of their significant end of life decisions to look like.

Eunice said: As she gets older she has decided to pay for her own funeral and she has also made her own will, these two things needs to be discussed with her children.

What approaches can you take to make sure that you get the right care and support that you need?

My thoughts: There are different places to access care and support that can be offered to people if they fit in their criteria, but it has to be up to the actual person that would like a place, for example, St Richards Hospice. There are also other places too. These decisions need to be made properly, the person will need to speak to people that are important to them so they know what to expect once a decision has been made by the actual person.

Andy said: The advice I would give everyone is to believe in yourself and your right to speak up for yourself and make the decisions and choices that you are passionate about. And don’t feel worried about seeking out support, nobody does these things alone.

Eunice said: As you age you may have to think that you may need care at home or even going into residential care. You may have to sell your house if you choose to go into residential care.

My final thoughts: I would like to take the time to say thank you to Andy and Eunice for their vital contributions to this blog, this will be an interesting read for anyone who would like to plan for growing older.

Bild is holding a conference on 30 September called ‘Ageing Well with Learning Disabilities’. The conference will have lots of useful information about growing older with learning disabilities.

You can find out more about this here: bit.ly/GOLDconf22register

Where to get more information

My Life My Choice
My Life My Choice

Macintyre
Death and Dying | MacIntyre (macintyrecharity.org)

St Richards Hospice
In our community – St Richard’s Hospice (strichards.org.uk)

Through The Maze
Easy Read information about growing older with learning disabilities – Through the Maze (through-the-maze.org.uk)

Marie Curie
Easy read booklets (mariecurie.org.uk)

NHS Southend Clinical Commissioning Group
Publications – Mid and South Essex Integrated Care System (ics.nhs.uk)