Advanced Care Plan and Care home

My son is 37 and lives in a care home about 2 miles away. He has a severe learning disability, autism and is non verbal.
I have received a request from care home to “sign off” an advanced care plan they have completed for him. I know death is an inevitable part of life but I am finding it very upsetting. I think the form is actually for those with a life limiting disease, not a healthy 36 year old. Under the box headed “illness” it has been filled in as “autistic” As far as Im aware autism isn’t an illness!
I have tried to argue that the form isn’t applicable but they are insistent that the wretched thing is signed by us.
Has anyone else had to complete this form for a relative in a care home?

Hi Daisy. My son also has autism and is 37 next month!

It’s standard practice for all care homes and supported living services to do this as there isn’t always time to consult with families when things go wrong, as they can at any time, especially if the individual is non-verbal, or does not report pain in the way you or I might. Sadly, I remember the devastating effects on a family with an 18 year old who became very agitated with apparent moderate pain in his chest. It turned out to be a massive, and untreated heart attack. It was fatal. Nobody had any idea anything was wrong with his heart.

In many ways it’s often easier to think about now, when things are ok, than in the heat of the moment when there’s no time to think. I found that out the hard way when my sister died aged 53. She’d had a massive stroke. I was left with the job of deciding when to switch off the life support because there were no advanced decisions in place.

We’re currently doing my son’s. It’s not easy and it’s not fun, but it beats having to make the decision when the time comes. Considering how often I tell people how important it is to plan ahead, I’ve regretted that mistake over my sister ever since.

Thank you for taking the time to reply.
I just find the concept very difficult and intrusive. I don’t have an advanced care plan for other family members, including my elderly mother. If my son is ever ill we are first point of contact and we would make medical decisions about his care with medical professionals not a care home assistant who can’t spell his name properly. I don’t understand what scenario the “plan” would ever be used. Sorry, just venting!

No worries. Venting is fine - we all need to do it from time to time. All the more so when you’ve been caring for such a long time. It’s also really difficult to think in terms of mortality: especially for our kids. We expect them to live long after we’re gone. So we’ll do anything to avoid talking or thinking about it.

In reality, life has ways of making those expectations seem like a fairy tale. And of course although we know that everybody dies, we rationalise not doing anything about planning for it.

What if you’re away somewhere and difficult to reach? Or something happens to you first? Or your son is so gravely injured that a choice has to be made to resuscitate or not and you’re difficult to reach? Phone off in a theatre, or cinema? Lots of possibilities, unfortunately.

Those are the kinds of scenarios that can easily happen at our age.

Eight years ago, my wife could walk miles and miles. Now she spends time in a wheelchair if she wants to go more than a few yards. That changed our thinking a lot. You never know what is going to happen and there are so many possible scenarios it’s impossible to think of them all or to imagine them all. So prepare for what you can.

Put it this way: my Mum has dementia and we did one of these advanced care plans for her. Because I’ve had experience of being in the position to make the decision before, on the spur of the moment, in all that stress. A time when my emotions were raw and overwhelming - and a time when I needed to be thinking about the best options (not necessarily outcomes) for my sister. I still second guess my actions even though I know I did the right thing. But having the decision made in advance would have saved a lot of additional stress, and I would have had the knowledge that I’d made the decision in her best interests and that I’d been in a position to think about the decision rationally. No second guesses, no anguish.

Obviously, it’s up to you - the care home HAS to have a plan. Legal requirement and any inspection they undergo will check on this. I’m not sure whether they have the ability to create a plan without your input, but it’s not something I’d recommend.

EVERYONE should consider what is going to happen when they die, write a will, and a power of attorney.

We’ve had two sudden deaths in the family, one was my lovely husband who died in his sleep from a massive heart attack when he was 58. It feels as if nearly everyone I have loved has died sometimes. Brother, sister in law, all four parents.

The fall out from some of these was dreadful. Dad was a brilliant scientist with a maths degree, but as his cancer took hold he made some dreadful financial decisions, all dumped on me to sort out.

Make sure someone knows about your finances, which bank you use, etc.
I made my first will at the age of 21, before we went abroad.
Just write a plan, put it in a drawer, and hope it won’t be needed for a long, long time.