Imagining The Future When You Lack Capacity

Hells bells. What a sad end to what has been a lovely week.

Spring has sprung in Cowley and both us have been bounding about like new born lambs.

Usually with Steven, we have to do some careful planning and plenty of advance warning about the changeover from the winter to the summer wardrobe. However, on Tuesday afternoon, Steven suddenly announced: ” T shirt tomorrow morning Dad”.

He has also turned his attention to our summer holiday in Torquay and started planning the compilation tapes we’ll take with us for the journey and during the week. So, on Tuesday afternoon, we did our annual tape with songs with “holiday”, “summer”, “sunshine” “beach” in the title. And this afternoon, Steven requested that we do our yearly The Beautiful South tape.

For me, yesterday was idyllic. I didn’t have any clients after 3pm, so skipped lunch and after the last client left, I walked along the towpath to the pub/restaurant by the lock and enjoyed two hours in the beer garden watching the boats navigate the lock. I love how the river has suddenly come alive – the traffic of boats has increased in just one week and people are enjoying leisurely strolls along the bank.

Then this afternoon, reality struck. Steven was watching The Sweet’s greatest hits DVD and out of the blue, announced:

“Dad – Steven Neary is going to die when Mark Neary dies. Steven Neary’s not going to live in M House forever and ever”.

It wasn’t asked as a question. It wasn’t said with sadness. It was a very matter of fact statement. And for someone who fails every single mental capacity assessment that he is set, I thought remarkably insightful.

This has been bubbling for a few weeks now. Since our birthdays in March, Steven has been very keen to know when he will become “an old man”. He has been spending more time than usual looking through the photo albums, focusing on pictures of when he was at school. He hasn’t classified me as “an old man” yet but it is clearly on his mind.

I met with Steven’s social worker the other morning. She came to my new flat. She is one of the good guys. We talked about the future and I said that after I’ve gone, Steven will have the choice of two homes – his current home or the flat. I could see that those two options weren’t seriously on the agenda as far as she was concerned – the third option of going into a home, seeming more likely.

I find it incredible that Steven knows all this. Capacity assessments are about testing the person to see if they can weigh up the pros and cons of a situation and make an “informed decision”. In his own way, Steven did just that but what a bleak picture he sees of his future.

What makes me howl though, is that he is probably spot on.

18 thoughts on “Imagining The Future When You Lack Capacity”

  1. I love reading your blogs, Mark. So much of what you write resonates with our own situation here with our 25-year-old son, Daniel. I’ve been thinking about the future a lot recently, and, on a lovely summer’s day, I look out of the window and see the same blackness. Damn. Damn. Damn.

  2. The people with innate power have never been the ones who need to prove it to themselves, constantly and at someone else’s expense. How humbling.

  3. This does illustrate the problem for people whose nearest and dearest ensure they have the support they need as they want it and too often as here following hard-won advocacy. Losing the person who’s been so much part of their life must be like losing a partner but more so as they have been able to trust that they are listened to and cared about. It gives people safety and security, as well as the life they want. Sensibly, we should all think about living wills but for people with learning disabilities who lack capacity, we should maybe consider what the plan is. Locally I am the “suitable person” for a long-time friend who has sustained brain damage resulting in serious loss of short-term memory. What we have done is identify a local charity which we trust who has said they would ensure that the pa’s and her control over what happens would continue if I die first. They also offered this for a family with a son with severe and complex learning disabilities who had his own individual support package with pas managed by his family. There are good charities out there with skills and integrity – it can too often depend on the quality of the leadership but also how they live out their values. Can be worth seeing if you can take some control over the situation so you could find the kind of personalised caring and committed support out there with whom you could secure continuity for Stephen, and keep them under review. I do think the fraility of personal budgets/direct payments is if there isn’t a good contingency plan and plan for the longer-term. I guess some Circles if they are kept dynamic could also secure this.

  4. I find the right for my son to live independently remains contentious and I get the feeling I am being humoured whilst I am alive merely because I “battled” to gain the funding that enables him to live independently however if others get involved post my involvement costs will increase and will potentially debar him from that independent lifestyle which enables him to be the better man and maximise his potential and avoid a pharmaceutical cosh or being sectioned as he has staff consistency and familiarity. I am disgusted by what culturally happens with SS/government whereby they battle to ensure our loved ones don’t live independently based on the grounds of costs. I am of the firm view that the minute my ability to be the main carer/nearest relative ends they will draw a line under all my efforts and throw him in a home. What the capacity assessment fails to recognise is that once an individual is empowered to make decisions they learn to differentiate hence the reason no one wants to give those with LD control cos god forbid (as with women) they may get a taste for freedom!! Moving cultures is not easy and breath taking ignorance remains were disability is concerned. The issue is cultural whereby all those that can contribute to the system have the right to live independently all those that don’t do not have the same rights also feel no one cares like we do nor will fight in the same way to ensure our loved ones get the rehabilitation they need and progress in APPROPRIATE WAYS. I despair over the future and am at my wits end trying to work out how I ensure he retains freedom and independence and has a fulfilling life in the future without me…

  5. Mark as a dad in a similar situation I can completely understand your trepidation about the future, my Adam is 26 and has next to no mental capacity so I have had to confront these thoughts about the future too and make plans.

    The one ‘advantage’ I have over you is that Adam is already in a care home due to his extremely high needs so if things stay the same of course when I shuffle off he will remain looked after by the State as at present.

    Even though this is the case none of us knows what the future holds and for this reason I have set up a Trust with a solicitor to be enacted on my passing so both my missus, who also has a learning disability, and Adam will have some help from the trustees to make sure their support continues to be fit for purpose and as far as possible meets their needs.

    It’s not a perfect solution as any support provided by the trustees will be charged to the estate but at least their best interests are assured for a very long time to come. I am not saying you should be doing the same thing but it might be a good idea to consider the options as soon as you can.

    Steven’s insight is wonderful, even though they are uniquely wired I am sure our kids understand a lot more than they let on. You are doing a brilliant job as an advocate and fellow trouble maker Mark, keep on trucking. Not only are you doing a fab job for Steven you are also doing a pretty awesome job for many others like me too.

  6. Has ANYBODY found a good answer to this terrible fear? Rosemary, when you say you found a local charity you could trust, how did you do that? Anyone know of one that operates in London?

    The Care Act makes much of the idea of “independent advocacy”, but it seems to me that what is needed is peope who can act as REALLY independent care managers – people who do what we do – argue for care to be in place, and deal with the problems when it breaks down.

    Mark, as you say, Stephen has two homes. Why should the LA be able to sell one off for care fees? We are in a better position than most, as my daughter does/will have funds to pay for care, and a home to live in. She does regard her carers as an alternative family – not the same, but enabling. How can I make sure it stays in place? Why is this all so difficult? It isn;t JUST about money – power, lack of imagination and indifference has to be fought as well.

  7. I Have worked most of my life with people who had no families or good support. My little charity enabled this to happen for 200 plus people over 30 years of work. Some people were considered very challenging and had lived in institutions for years. I’m proud to say they all live in their own homes and we have ensured at the end of people’s lives they have been lived and supported in exactly the way they chose. It’s hard work and you are always fighting for it. I think we got very close to people we supported because we did care and they had no one else. There are people out there if you can allow them in who will fight tooth and nail for your son, Mark.
    I’m not young enough now or near enough to make you any promises but please can I suggest you set up a discretionary trust for him and have trustees over the years who will ensure he is treated well. No one will ever replace you but people can really try hard. There are genuine people out there.mwhy not just ask if a few people would be willing to help you put your mind at rest. I’m sure you would be surprised.

  8. I would be willing to sell my soul to the devil if it meant my son had the same autonomy as my two other children.

    Imagining my son’s existence when he is left to the mercy of the state is the stuff of nightmares. He will become just another entry on some care company’s financial balance sheet.

  9. Pauline Me too. II’m 80 and still fighting fit, but I have lost every fight in the Courts for my son’s independence. The latest is that the LA have over ruled my EPA, the one legal document I held to protect him. We have a discretionary trust, but if the LA can over rule the EPA they will certainly circumvent the trust. The Court of Protection has not allowed me to appeal the judge’s refusal to allow me to be Martin’s health and welfare deputy, in spite of Martin’s request. Nothing else I can write without getting too depressed, except DONT LET THE BUGGERS GET YOU DOWN

    1. Thank you for those kind words Lisa.

      I so wish I was great. I wish I had the fighting spirit of so many strong people I read in these blogs. Mark and Sara being just two that spring to mind, but there are so many out there who are not lying down but fighting.

      I am afraid I am losing the fight. Too weary. Too sad and too old. My poor poor son.

  10. Oh Pauline please don’t say that, your dear son may be alright. I cross my fingers and pray when I pop off my son may be alright. I am so so fucking fucking sad. This is so heartbreaking and soul destroying. Cant we look out for each others children? Form a club? It feels very right to do something.

  11. Thank you for writing this Mark. My son is much younger but has already expressed fears of what will happen to him when I die.I reassure him ,trying to keep the fear and sadness out of my voice.
    Pauline don’t give up! I don know what you mean about selling the soul. A while back I was stuck at a autism expo with a person who, unasked, was suggesting that by doing ABC my son could be cured(yes, really) and thus by not doing ABC I was wanting for him to stay as he was. (I seem to remember a process of blood purification and so on was being promoted.)
    I snapped that I would cut off my right arm here, now, on the spot to render my son able to help himself and deal with the world. A bit melodramatic but I meant it. I would do anything at all to be relieved of this fear of his future- but snake oil is not what is needed!

  12. Mark, do you have any relatives younger than yourself that can keep an eye on Steven and your LA when you’re gone? A younger sibling or a nephew/ niece? Granted it sounds like your LA have a loose idea of family but I’m sure they can take them on if needed.

  13. I have heard it said, that to have your child die ahead of a parent, is the worst tragic event ever. However, I pray that my child dies before I do.
    I know this is selfish, but who will realy care for him.
    His sister is set up with his care, but this will be a burden for her, and what if she were to die before him. Then what?
    I am still youg(ish) – But I live in constant fear for the future.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s