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Plan Z – The Wheat & The Chaff

April 23, 2017

A couple of weeks ago, I wrote about putting my “Death Plan” in place. I did an initial post on the subject –

To be honest it has been an unbearable task. Every section of the plan I’ve written has brought about howls of anguish as it brings home all the mechanisms that need to be in place for Steven to be able to continue living in his own home in the future. Never before, have I considered something that feels so important but so futile at the same time.

To be honest, there is no reason whatsoever why Steven can’t continue to live his life as he would want to. The detail I have included in the Plan is not unreasonable and is well within the Care Team’s capability. The big question mark is whether the State will allow it to happen.

I’ve nearly finished it and one thing that struck me this morning was how I have weighted the different sections of the Plan. Obviously, there are key sections like: how are the finances managed; what do I order each week from Tesco; all the contact details of the various organisations involved in Steven’s life. I’ve found though, that I’ve given equal weight to trying to replicate the more personal – the things that Steven does with me; the things that he talks to me about. Who will do those things and how? Will he still be able to have those conversations and with who?

As an example, I’ve thought about the two compilation tapes we do every weekend. They may appear quite random to an outsider but there is some method in the madness. We may do a whole tape with songs that have people’s names in the title (Barbara Ann, Valerie, Billy Don’t Be A Hero). We may do a tape with artists whose name begins with the same letter (Steps, Slade, Sonny & Cher). I’ve typed them all up! 70 categories! Steven being Steven, all our CDs sit in alphabetical order but is too much of a tall order to expect someone to take on this job every Saturday and Sunday.

Then there is the conversations. I’ve done a pictorial family tree, so that someone less acquainted can see where everyone fits into Steven’s history. I’ve named the names and the relationships but I can’t possibly include the 100s of stories about them that Steven chats to me about. A conversation between two people with a shared history is a very different conversation to two strangers having a conversation about one of their histories.

My priorities, and fears for the future, showed up markedly in my list of “Important Contact Phone Numbers”. This is how the list was ordered: 1) Support Workers, 2) Family & friends, 3) Medical, 4) Legal People, 5) Press and Media, 6) Advocates, 7) Official Organisations (DWP, OPG etc), 8) Places Steven goes to, 9) Tradespeople. I guess numbers 4,5 and 6 reveal that I expect the future may be bumpy and they could have a fight on their hands.

It struck me earlier how far we have moved on since the days of the Positive Behaviour Support input into our lives. I was scrolling my Facebook timeline and someone had started a thread, asking for help about dealing with her son’s meltdowns. I realised that I hadn’t included anything in the Plan about managing difficult behaviour. Not because we don’t get it anymore; more because we can take it in our stride. Five years ago, my living room table was covered in Lever Arch folders with 100s of pages of PBS risk assessments and risk management plans in them. Those days are long gone, both in the need for such documents and the priority we give them.

Someone asked me on Facebook the other day if I would post the final plan to help other people planning their son’s/daughter’s future following their death. A number of people chipped into the thread encouraging me to do just that. I’m not sure that I can. It is too intensely personal for wholesale sharing. And social media being social media, it is bound to attract people wanting to give advice, or people telling me I’ve done something wrong, or even just general feedback. I’m not tough enough for that. But when I have completed the whole thing, I will post a very basic template; it just won’t include any of the deeply personal information. I’m not convinced anyway that people don’t know where to start putting a Death Plan together. I’ve been putting it off for years, not because I haven’t known how to do it but because the whole process is so painful and upsetting. That’s the barrier that needs to be cleared before one can start and an acceptance that it is going to be one of the most difficult projects one has ever had to do.

I know that I will probably have to update the Death Plan several times in the years between now and my actual demise but it could just become an annual job – a task for those wet Spring bank holidays. The one good thing about completing a Death Plan is it allows you to get on with the business of living.

And that’s what we’re going to do. It’s Sunday, so it’s compilation tape today. And today we will be doing Songs with Place names in the title.

What’s the chances we’ll be singing Letter From America at the tops of our voices later?


From → Social Care

  1. Pauline Thomas permalink

    I personally believe Mark that one of the biggest successes you have achieved regarding Steven’s quality of life is the fact that you have successfully taken away the antipsychotic drug, Risperidone.

    I cannot imagine how much stamina it has taken on your behalf to ride out the meltdowns and not be tempted to put back the medication. Over medication of people with LD is a serious problem and one which is not being addressed.

    I hope the mammoth task of recording all he things that will keep Steven happy and independent and in his own home once you are no longer here will be a lasting legacy to Steven’s quality of life and one which most parents would aspire to achieve for their loved ones. I salute you.

    • Often over-medication substitutes proper help, care, or therapy – as even the government agrees.
      But my son relied on a very small dose (0.5mg -1.00mg daily) of Risperidone for several years while living with us, and it changed our lives. He started eating better, tolerating people more, we travelled a lot more. I hoped it would last forever, but after age 18 difficulties started again and I know how he was shocked at what was happening, so we increased the dose but it made no difference. How awful it was (and the consequences) I can’t write.
      Occasional Lorazepam helps post-age 19.
      I see with my own eyes, that drugs given with care, can help.

      Any drug in autism should only be given in small doses – if it seems to work – not if it doesn’t make a difference. Parents are the best people to monitor if people themselves can’t speak.
      Famous people with autism tell us that drugs can play a part, but in small doses – I’m thinking of Temple Grandin. For others, drugs don’t work.

      A psychiatrist (who claims to be anti-medication) who we had during post-age 19 said Risperidone was only for schizophrenia, but then used drugs on my son that were a lot worse. He gave no other treatment than drugs – and other MDT professionals never offered anything useful although I kept waiting and praying – so drugs it was.
      Except, my input (love and finding opportunity and giving hope), still makes the most difference, and I’m not scared of meltdowns. I accept them.
      I see the anguish and hopelessness that happens on a cycle, as well as good days, and I’m there for him for half of the week, and my feeling after years of wasting energy seeking help is that I’m the best expert I’ve met. It’s sad that I can’t access people who would be useful, but some professionals are backing me.

      • Putting aside bad psychiatrists mentioned in previous blogs, the best psychiatrists say ‘hope, opportunity and sense of agency’ are what every human needs to stay mentally well. As parents we try and give that (without needing any research), as in challenging behaviours that is often what our children express.
        Social Care don’t seem to follow the social model of care anymore, but perform like an old culture medical model.

  2. Pauline Thomas permalink

    I make you right on everything you said FF2016.

    Everybody is different. Toleration levels and efficacy of the medication depends on the individual.

    In my son’s case he has been on anti-epilepsy medication for over 25 years. He is 45 years old.
    These drugs are also used to medicate people with bi-polar. They are mood enhancers as well as anti-seizure drugs. My son did not have a mental illness when he was prescribed them when he was 17 years old. He did not need the mood enhancers but he got them anyway. Taking them down (because my son stopped having seizures) have turned out to be a nightmare. My gentle kind son has become psychotic. Hallucinations, aggression and meltdowns like I have never ever witnessed before.

    These last three years have been the worst of our lives and he has been given every medication to help him. Anti depressives, mood enhancers anti psychotics, all of them giving him side effects that rob him of any quality of life.

    I agree that it is only by extreme understanding that we can come to terms with his behaviour but after years of living with him as a gentle person we are finding it very difficult to cope with this now, especially as we are in our 70’s.

    The thing that hurts most in all this is that the people who now are trying to help us will only know my son as this aggressive unmanageable person and will form their opinions of him based on his behaviour and not on what the medication is doing to him.

  3. Total respect to you, Pauline.

    I love photos and video and visual learning, so I thought after reading what you wrote that ‘a life in pictures’ on a wall might help educate staff about who the person is – and give me moments of joy at a glance.

  4. Karen permalink

    Never given in to drug pushers. Took processed foods and drinks with chemicals out of his diet and balanced his blood sugar levels and limited carbs to one or two portions a day. Occasional use of Holy Basil which is non addictive and non sedating and instantly calming.

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