Death Rehearsal

I’ve been reading lots of stuff on Independent Living today and feeling as confused as ever. What does it really mean? It all seems intrinsic to the Personalisation/ In Control agenda but everyone I speak to seems to have a different view as to its true meaning.

One thing that pops up often in the Independence debate, is a phrase about “preparing the person for a time when the carer/parent is no longer around”. Social care professionals are especially keen on this concept and it was used all the time when Hillingdon wanted to send Steven to the hospital in Wales. We hear all the time about how families are excluded from the social care professional’s eyeline when the disabled person hits 18. But this takes that on to new heights (or depths) and taken to its logical conclusion would mean that the learning disabled person would have whole chunks of their life curtailed, so they can rehearse for a time when their carers are no longer around.

Whenever I discussed this issue with Hillingdon, they solely focused on the practical. Emotional connections never once appeared in the conversation. And I would suggest, that the emotional attachment for a learning disabled person is as important, if not more so, than the practical support they receive.

As Steven has become more mature, there is hardly anything practical that he needs from me. If he were to be living “independently”, he would still be needing 24 hour support, so a support worker would be providing the practical help and support. There are many things at home that Steven now does for himself – he can load and start the washing machine; he can cook something basic in the microwave; he can change his bedsheets; the list is very long. He may need help with some of the tasks but that would apply wherever he is living.

In the CoP judgement, Justice Jackson quotes the independent psychologist as saying that living at home with me was in Steven’s best interests because I was the “best person to engage with the narrative of Steven’s inner life” as a result of our shared experiences. This morning, before he went for his spa, Steven engaged me in a long Mr Bean discussion. The two support workers were around but he chose to talk to me about it. When Steven discusses a Mr Bean episode, his narrative includes memories of the many times he’s watched it; how he’s acted out the episodes in his real life; who the people in the episode resemble from Steven’s own life. I know why Steven choses me for this chat – I am the only person who can connect to all the references. The support workers will try but they don’t have the shared history. This is very important to Steven.

I remember a moment in 1997 when we took Steven to the London Transport Museum during the school summer holidays. Earlier on that year, I had been to two funerals for the last of my aunts and uncles. Whilst at the museum, they had an old 120 bus on display. I used to travel on this bus many times as a kid with my mum and Auntie Rose. I became convinced that the museum had got the wrong destination on the front of the bus. The event pierced my gut because it hit home on the tube home that there was nobody left from that generation in my family to check this out with. When the last one who remembers is gone, you really are quite alone.

In my counselling work, I have seen hundreds of people who are either facing their own death, or having to deal with the death (imminent or actual) of a loved one. And one consistent thread from where I sit is that nobody can predict how they are going to feel or react until the time actually comes. Whether you loved or loathed the person, on their death, everything changes and major psychological and emotional shifts take place.

So why should the learning disabled person be put into a forced rehearsal that (a) the non learning disabled person doesn’t have to undertake, and (b) is actually impossible to do.

I suspect I’m rambling. So, one final story to finish on. Last week, I was cleaning upstairs and I heard “Fox On The Run” by The Sweet come on the radio downstairs. Steven launched into a full blown narrative with his support worker, who try as hard as he might, didn’t really get a single reference. Steven told him the names of all four members of The Sweet. He talked about how they played the song during “nature studies” when he was in Gilbert Best’s class in primary school. This was back in 1998 (16 years ago) and the class had just been on a nature trail in Ruislip Woods. Steven talked about the time “Dad saw Brian and Steve in the bacon shop in Hayes”. This must have been about 1974 and I jumped off the bus and followed them into a cafe, sat myself at the table opposite and listened to every word they talked. Steven has adopted that story, as one of the hundreds of family histories that entertain him so much. And when it came to the line “Foxy on the run”, Steven reminded the support worker that Foxy used to go to Pop Idol with Pete Waterman. All of these stories went way over the worker’s head.

Of course, there will come a time when Steven won’t have anyone to relate these stories to. But it would be a real shame to bring forward that moment, in the name of making him more independent.

18 thoughts on “Death Rehearsal”

  1. Hello Mark
    Thanks for this. I’ve written before – I’m a sister to someone with a (severe) learning disability, not a parent, but this post really hit home.

    My brother moved across the country when our Dad was in his 70s to live near me. This so that when Dad died,he’d have a settled home and lifestyle and wouldn’t lose his primary carer, community etc all in one hit. It may be this is what you mean by having to rehearse loss? The move was tough – tougher for dad than my brother, who seemed to take to his new home really well and has lived there happily ever since – 20 years. I think this was the right call.

    But you’re soooooo right about the emotional stuff. Our dad was everything to my brother and his death (2 years ago) caused him deep grief. Despite the apparent lack of understanding, this was grief – old fashioned grief – shouting- not sleeping, – not eating – hating the world – grief. It’s been a couple of years now, and he can tolerate family gatherings without searching for Dad, but he has me and his sister (and other family members) to keep all the emotional stuff alive.

    That shared history is vital for everyine’s personhood. Somehow we need to let professionals (I’m one too) know how important that is. Any ideas? let’s think about it….

    Thanks for all you are.

  2. Why in the world would they want an LD person to go through an imaginary trauma? No matter how they play it, it is still “a play” and has nothing to do with reality or how that person reacts in future. We can all try to be prepared for such eventualities, but, a rehearsal? Did someone come up with this rubbish just to get a paycheque for making up new catch-phrases, and now it’s a whole new way to pre-traumatize people, so they’re somehow’ ready’ for real trauma?
    I’d say this is verging on abuse.

  3. I don’t think you were rambling at all. THE most difficult topic, but I am so relieved to find I am not the only one that thinks that way. Ever since my daughter was about 16, (She is now 36) I have been made to feel guilty and unreasonable because I couldn’t follow the logic of sending her away from the home and the people she loves. Yes, I know, only too well, how hard it will be for her when the time comes, but I could never see why it would be easier to deal with what she would see as rejection at 18. She has, fortunately, never been faced with the trauma that Steven had to deal with – but she knows the threat exists, and suffers some of the same fears – of lack of choice, imposed solutions. She will constantly check: “No-one is going to take me away?” (Some very clumsy “independence training” at school affected her very negatively.) I do sometimes envy those who have children who WANT to leave and try independence – but mine is very, very clear that she does not want that. Gets me labelled “possessive, over protective” etc etc – but I can live with that. It is HER choice.

    I had only half realised how important our shared lives and stories were – you have put into words for me something I could not precisely express myself.

  4. Hi,
    It is interesting that ‘folks’ think you should be preparing for this. I went through a horrendous 18 months with a pupil. I know him and family very well, having taught him age 6-7-8, then again when he was14. His mum died very suddenly one day. Every professional I contacted to get support shrugged. No one had any ideas about how to deal with grief with a young man with autism- camhs, cat, ed psych, social worker- not a scooby. He was clearly struggling, crying out for help, and there was none. Like Steven, he was a very musical young man (with the dance moves to match). I literally begged for music therapy, but it proved impossible. So, in my experience they should be doing nothing to prepare him- this is prob what they will do in a crisis.

    Just a thought- if you ever fancied putting together some advice or those of us that work in this field from a counselling point of view there would be a market for it. I’m not sure it would make you rich… but maybe it would point us in the right direction.

      1. Having dealt with pupils with sld/ and or autism who have lost family/ friends there are no resources to guide you through process. I understand my pupils are people, and will grieve in different ways, as we all do. However, some ideas about how/ when to approach things would be helpful. Some kind of resource pack – ideas of ways to talk about it, sources of support- for staff and pupil, ideas for activities to help. I think nothing can be perfect for every individual, in the same way that no reading program is perfect, however they provide a starting point. Dealing with death can be very daunting- knowing the person will notice, but with no idea how to begin!!
        I was unable to find any agency willing to be involved. The personal understanding bit is key, but for a non specialist it’s hard to know where to start! It just didn’t feel like it was enough just to be there, and it wasn’t. If there was a story, film, comic strip… Something to start with. Or even some guidance as to where to start.

  5. As far as I can gather, the “independence training” offered to my daughter at her special school conveyed the messsage “Your parents will die, and you will have to manage without them so start learning now”. (It may have not been quite that bad, but it was certainly the main message she took from it.) As my daughter had a much more realistic estimation of that being feasible than they did, it made her regard any move towards independence with a lot of suspicion, and I have been trying to undo the harm it did ever since.

    Like Mark, you try to provide some kind of stability and continuity of care inside a very unhelpful framework, stuck with the absence of support (and money) that is terrifying.

  6. Hi Mark, thankyou for this blog, it is great in so many ways. My son’s father died suddenly when my son was 7 and we had to work out ways of talking about why he could no longer see his daddy. Three years later, after thousands of iterations of anxious questioning and my attempts to answer in all their forms, he suddenly said “Daddy died”, “yes, daddy died” “mummy is not going to die” “no mummy is not going to die”. He still asks to see his dad but now the process is not loaded with anxiety, instead it has become his way of keeping up with all of the people we no longer see, he asks to see them all in one long recitation and expects me to inform him that we won’t be seeing them and why. I am so frustrated with the many people who refuse to believe that he really does understand that his father is dead and that he has grieved and continues to miss him and that the questions are now part of a fond remembering. I fully expect to be touching base with him over his dad, his preschool teachers and every other significant figure that passes out of our lives for the rest of my life. One day we will have the conversation about me not really being immortal but the age of 10 was not the time.

  7. My son is in his lat 40’s and I am in in my mid/late seventies. Ask any aged parent to talk about the issues they have met over the years in just trying to retain safe and happy care? It will have been a lifelong job with floor dragging lows and highs like that rare holiday when everyone has a great time and the sun shines every day.

    Not being around for him in the ever nearer, keeps me focused. Finding out about the best way to write my will, not a cheery task? Being fully occupied fighting illegal cuts on his care, learning about the law, hanging on to a solicitor, and retaining slippery legal aid. Other old parents who can no longer do this, are powerlessly fully occupied picking up the many crises and all the day to day care, plus increasing depression in their adult son and daughters,.. alone. Care and support for older people who live with learning disability has been slashed. Those who still have some sit on the edge of a precipice, till the next assessment…and then the next? Worry about our demise…., are they having a laugh?

    Who is going to ensure this newest (flavour of the month?) theoretical understanding eg preparing our son/daughter for their life after ‘the family carers’ demise, In the above context above….?

    Paid home support carers are in the main, zero hours paid, and often an ever changing casual worker with discrete tasks.. We have a good one at present, the last one, was/is a subject of safeguarding investigation, and was worse than shockingly bad. There are few LA social workers left in the learning disabled field. One I contacted in a crises recently said that in this LA SW’s do not do social work now ”we are only brokers’. A very recent study on advocacy has highlighted the many problems with advocacy services. Who is going track this potential ‘demise’ preparation, and who is it for?. Have a look at the current research areas in Learning Abilities, in our universities:, …. esoteric only begins to describe it? And who is it for?

  8. (Weary Mother,”we are only brokers”??!! That’s up there with our beloved local speech therapy service: “we are moving away from direct patient contact”)

    Well, its a paradox, isn’t it. Someone who feels secure in where they’re living and their close relationships will proably be more, not less, happy to work on skills which would help them to be independent .Conversely, someone will be ambivalent/hostile to learn behaviors which they have every reason to fear will lead to them losing their current security and closeness. “Learn this so you can move away from your family and live alone” is no motivation apart from an imposed idea that its good for them.

    Then we have our own ambivalence-if my kid can be said to be able to cope alone at this level, when I die will he/she miss out on suppport? Will he/she end up alone in a flat because I taught how to prepare a simple meal? Why don’t I keep my bright ideas to myself???

    Of course we all want out LD kids to learn how to deal with the world independently according to their abilities. But not at the loss of family life.
    And everybody is right, its terribly upsetting for a LD person to be told that one day they’ll be without family. This is a group who may have almost no ability to cope with such a vague (It could be tomorrow! It could be in 50 years!) distressing concept.
    My son’sgrandfather has just died. He has been weeping for days and is afraid to have me leave the room in case I vanish. He constantly asks for promises that I won’t die of XYZ.When I can’t promise him I will live forever he cries rocks and howls. I do not think its anything other than pointless sadism to tell him that the future is uncertain so he should crack on and work towards skills for life alone.
    I have seen a couple of good books for LD people who have lost someone which explain things very clearly and in a perfect world we could belive that when we do die, not only will our kids be in good care but that someone will take the time to sit with them and help them through understanding their loss . But rehearsal right now? No.

  9. This is interesting. Since my son was 18 people have always said to me that I should put my son in to a care home to prepare him for when I am not around anymore.. I have always said ‘No, there will be plenty of time for that when I actually am not here anymore! I am all for a bit of respite from each other in whatever form, as that just makes more sense but to move someone away to prepare them for horrible times in the future is bizarre to me.

    1. My son has lived ‘independently’ first in a small group home and then in a housing association flat since he was 20 years old. This was his choice and and it is one that I have sponsored and have supported. My issues are all around the way good and respectful care for him always ebbs and flows. More ebbing than flowing, at the moment, and my energies are fully occupied in getting it flowing back again, before, and I have no immediate plans, I, in my son’s words ‘pass away,. as many of his peers parents have.

      I am aware that I may have sounded earlier, like an oldie having a bit of a rant, For all we parents have been ‘preparing’ for this. at some level, since our child’s diagnosis.. But us oldies are worrying a lot at present, for care and support is at it’s most unpredictable and unstable.
      Kindest regards.

  10. I am 35 without disability and I’m certainly not anywhere near prepared for the day I no longer have my parents around. Odd that professionals try to impose rehearsals for major life events on people with difficulties when one would never consider doing it oneself!

  11. I agree with you no Support Worker can fully understand your son because only you and him have had those shared experiences and only you fully understand where he is coming from. I have this with my son I am his emotional security as he expects carers to know what he is trying to say and spends a lot of time repeating the same stories as it provides him with security. When he is in the respite unit and I turn up he is telling me everything as if I have pressed the start button on the tape recorder. The staff cannot understand why he won,t talk when I am not there. I know exactly where Stephen is coming from. If it was not for us our sons and daughters would have to be seriously medicated to prevent melt downs.

  12. If our loved ones are given the freedom to live in a non contentious way then this is independent living as I understand it.

    Now if your loved one is living independently with support then his carer is not a carer but then becomes a Personal Assistant. (P.A.) to enable them to live independently.

    The word carer has to me connotations of being in need of nursing. That we are parents giving un-conditional love and support.

    I hope this makes some sense…..

    1. Anonymous this is so correct. When my son had LA support, his worker was called a rehab officer
      ( rehabilitation was not obvious!, whatever this means). When his support/rehab was handed over to a private agency, I had a lot of work to achieve understanding that he was not sick and it was stigmatising for him to be to be accompanied into his community (or in his home) with someone wearing a white ‘nurse’ uniform.

  13. I agree with Nette – it must be frightening for people with LD to be put through these “rehearsals” and “training” when nobody else has to. It’s a worry what is being said to your son or daughter when not in your care…..

  14. I really don’t get this imposition of independence on LD people? I mean just because a non learning disabled person is ‘theoretically’ an adult at 18 doesn’t mean they stop relying on their parents or family. Families can offer a huge range of emotional, social or practical support to one another throughout adulthood which is what it should be so why are professionals intent on breaking this up for a person with a LD. The death of a parent is always going to be hard but preparing for that eventuality surely impacts on the quality of family life. Wouldn’t it be better to provide support when that parent dies rather than spending years preparing for that eventuality?

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