In memory

I would ask you, for a minute, to imagine you are a parent of a young child, or with a loved one walking through a busy shopping centre. Your focus is on the displays in the store windows, the piped music and occasional announcements, the general hustle and bustle of the surroundings. Totally consumed by what you are doing, you turn around to your child, or loved one and they are not there …

How would you feel? The sudden feeling of absolute panic and frantic searching, the rising sickness in your stomach, the cold sweat of fear, not knowing what to do, you start running around looking, calling their name and desperate to see their familiar face. But you don’t. Your emotional senses go into overdrive, nothing makes sense, everyone and everything are in your way, looking at you, staring, shouting, ignoring your need for help …

This nightmare situation is something that we have come to believe is close to the way our son feels about bereavement. He has severe Autism which creates difficulty in dealing with change. Death is a sudden and perhaps ultimate change that cannot be easily understood or mentally processed.  Questions of where are they? why can’t I see them? when will they be back? are all common in his attempt to process the fact they are missing. As he also has Learning disabilities, the concept of death remains a concept he is unable to properly understand.

We attend the church service, which has the familiar and comforting repetition and structure as other services, but he remains unaware of the purpose of the service. He sees the coffin, around which prayers are offered, but in his mind, that coffin simply remains a box, being unable to understand his late grandmother or grandfather or great-uncle lies inside. We don’t push this as it will cause nightmares. At the graveside, we watch the lowering of the ‘box’ still not understanding our late relative is being placed in their final resting place.

As we leave, his thoughts again move to when he will see them again.

A person with Autism will accept what you say literally. When we say, we are going to visit grandma, we know we mean the grave, to place flowers and offer a prayer. Our son believes we are going to actually ‘meet’ his grandma and becomes distressed when she doesn’t turn up and can’t understand why we have stopped at a stone in the field.

We are church going Christians and our son loves the structure to a church service – if it doesn’t last too long – but the understanding of Christ and Heaven remains something that really cannot be processed or understood. There is a belief that we can reach Heaven by car or train …

Mental illness is a horrible ailment. In whatever form, it takes, if the mind is unable to process spiritual beliefs but only literal understandings, events like bereavement become so difficult to support him through and we always feel we never support enough.

The loss of a relation or friend remains just an absence of that person and which over time he simply becomes ‘accustomed’ to not seeing or speaking to.

It is important to explain and talk with someone with mental illness in as much detail and in supportive tones as possible. Be prepared for the questions, repeating them frequently and to answer them in the same calm way, no matter how many times, but remember above all, this person will not be able to process understanding as you do, their minds will be in turmoil, struggling with this change and it will take time and confident endless support to bring the unfocused mind back to the present and a familiar calmness and routine.

This isn’t to say we work to forget the loss – and after all, we grieve ourselves too – but treat it in a careful and considerate way. We visit the grave, but we call it ‘the grave’, not the person. It is then seen as a marker for that person. We will light a candle in ‘memory’ of that person and together we say a prayer. These literal activities are easier for our son to understand and comforting in dealing with his loss if they become regular activities.

This is our way of supporting our son through a bereavement, we learned over a number of years how much he can process and how he will behave emotionally. There will be other ways, but if you support someone in a similar position as we do, please be considerate, even in your own grief, they grieve too, just differently.

4 thoughts on “Bereavement

  1. It is so hard for anyone to really appreciate how difficult all of your lives must be. You and Mrs F, without a doubt have done a sterling job of making Marc’s life as pleasant as possible and I’m sure that he appreciates it very much in his own way.

    All the best

  2. Hello Paul,
    I feel so humbled by your unswerving dedication to not only caring for your beloved son on a daily basis but also your constant learning how to understand his many issues and deal with them in a loving and gentle manner.
    Marc could not wish for more caring and loving parents and in that he is far luckier than many others in his position. However, your own lives must be full of anxiety, fatigue and distress on so many occasions, often on a daily basis. I can only send you both and Marc my love and say that I think of you all constantly. Gillie.

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