by Tess Clare Marshall, Communications Lead
I don’t normally wish for a time machine, but I’ve been thinking about it recently.
My late brother, David (pictured), had Down Syndrome. Although fairly independent, he lived with our parents until first Dad and then Mum died.
When Mum died, quite suddenly, it was down to my sister and me to move into the family home for a couple of years and make sure David had what he needed to live a good life, and plan for his future.
Putting a puzzle together
And we found out there was a huge amount we simply didn’t know. Which was his GP surgery and did he have any health issues? What about his financial situation (he was in paid work but what were the implications for other allowances?) His social life: his friends’ contact details, did he have any holiday booked, and where was he going? Who was his social worker and what help could they provide?
Over the first few weeks and months, all kinds of things started to crop up about which we had no clue.
David, frankly, wasn’t much help because Mum and Dad always handled everything for him. We went through Mum’s papers, address books and other resources. We pieced everything together eventually but it took a long time.
A difficult change
Believe me when I say that taking on a whole new responsibility and major life upheaval when you don’t have the complete picture, all while grieving the loss of a beloved parent is… tough!
Which is where going back in the time machine comes in.
Preparing to Support
MacIntyre recently launched a new programme for parents, carers and siblings called Preparing to Support.
I wish we’d had access to this back in the day before Mum became ill. It wouldn't have helped with the grief, but it would have helped with the practicalities.
The programme leads families through all the practical stuff before it’s needed.
A structured approach
Prepare to Support is an online programme released over a number of weeks by email, giving time to work on each part in between. The idea is that you find an agreed way to record all the information and discuss it as a family.
Topics covered include:
- Jargon and acronyms
- All about your loved one
- Who is involved now?
- Aspirations
- Diagnosis/Health/Medication (including history)
- Allies and barriers
- Finances, Insurance and Benefits
- Passwords
- Support and housing providers
- The official stuff - Wills, Trusts, DoLs, Appointee, Power of Attorney
- Equipment
- Staying over, sleep and personal care
- Meetings
- Times to keep the plates spinning, things to be aware of, gaining confidence in meetings, a 'waiting for' section, an 'easy to find' section, where are the important documents, keep a gift idea list
- Education or employment and volunteers
Find out more in this video:
Reassurance for the future
None of us like to think of a future when we won’t be around (I can’t tell you how many times I put off making a Will!) but using a programme like this to plan ahead takes so away so many of the practical problems when the unexpected happens.
Free and for everyone
It doesn’t matter whether or not your loved one is supported by MacIntyre. The Prepare to Support programme is completely free to anyone who wants to follow it.
You can sign up here.
If you have any questions, feel free to [javascript protected email address].
