An holistic approach to caring for someone with Severe/Very Severe ME
What might be considered insignificant or tiny achievements, such as being able to cope with moving the bedclothes, take a sip of water, open your eyes and looking at something, being able to tolerate the help needed to get to the toilet; these can be big events in the life of the Severe ME sufferer, even though the well person might take them for granted or not realise how huge they are.
In taking a holistic approach you need to take account of the person’s reality. You might reflect upon their experience from a mind, body, emotion and spirit perspective, before engaging with them.
It may help for you to be consciously aware of the following:
▪ There are complex cognitive difficulties which the person may be experiencing when trying to interact with you
▪ There is likely to be a break to all forms of communication in and out of the person.
▪ Thought and information processing is often severely affected, therefore the person's understanding and comprehension of what you are trying to communicate or convey or do, may not be as straightforward, simple or as possible as you imagine it should be.
▪ The person may not be able to tolerate or understand any form of communication you make in any one moment. They may also not be able to communicate with you in any predictable or expected moment.
▪ Cognitive dysfunction will interact in a complex way with other severe symptoms such as visual disturbance, noise sensitivity and functional incapacity (for example a lack of motor control and muscle dysfunction) to make communication a major difficulty in both an inward and outward direction.
▪ You have to think about how to communicate to the person in ways that they can tolerate, receive the information and understand it. You also have to think how to enable the person to communicate with you and what to do when direct communication is impossible. It cannot be forced. Being prepared in advance for a range of possibilities and reactions is always the best way to approach helping someone with severe ME. Problem solving needs creativity in our experience.
▪ Communication is not simple and can be frustrating and complicated to understand and may change from moment to moment.
▪ The interaction of symptoms and the general level of pain and physical suffering must be understood as much as is possible.
▪ Every effort must be made not to hurt the person further or cause deterioration or distress.
▪ You have to think about what you need to physically do with the person to help them and how to do it in the most careful sensitive way possible.
▪ You have to understand the affect of physical contact.
▪ You have to understand the affect of movement on the person.
▪ You have to understand if the person can tolerate particular positions or not.
▪ You have to understand the Central Nervous System chaos and crash that over stimulation causes.
▪ You must allow adequate recovery time after any interaction to avoid further or more, long term deterioration.
▪ You need to understand the post- exertional reaction to any stimulation or activity, no matter how apparently little or ordinary it seems to you.
▪ You must understand that something quite small, like too much pressure on the skin, on some other apparently unrelated part of the body or exposure to even what you think is a slight noise or a small amount of light or just making a particular repeated movement in the visual field of the person, might still cause huge reactions in the persons body, such as numbness in throat, paralysis in tongue, paralysis in arms, full or partial body spasms, nausea, head pain, etc. and last for hours beyond the time you have spent with the person, making it harder to re-engage the next time you want or need to.
▪ Emotional lability is part of ME.
▪ There may be physiological reasons for a person being apparently emotional, such as hormone imbalance or drugs causing heightened emotional, even suicidal states, for example steroids and some anti- depressants.
▪ Any negative care impact, even though unintended, is likely to cause distress and mistrust.
▪ It is important not to misinterpret the physical experience and any consequent distress, as the person being over emotional or unduly sad.
▪ Pain and careless exposure to environmental stressors will cause reasonable upset.
▪ The person with Very Severe ME, particularly, is likely to be extremely isolated and in need of comforting and affirming experiences.
▪ Make sure that you do not misinterpret the person wrongly and label someone as difficult, depressed or over emotional, for genuinely being upset with reasonable cause, because you do not understand their experience.
▪ If possible try to have happy moments which are uplifting.
▪ The symptom experience itself can be frightening.
▪ The lack of knowledge people, including carers and health practitioners have, can be frightening and makes the person with severe ME very vulnerable.
▪ The connectedness a person feels with you will be enhanced if you get the care right.
▪ You need to convey reassurance that you care and that you are aware, so that you can flow together in any moment.
▪ You need to convey kindness and genuineness.
▪ You need not to bring discord into the room with you on any level, whether noise, light, busyness etc. .
▪ You need to convey unconditional positive regard that you are there for and with the person and not only do you want to help them, but you want to help them in the right way.
▪ The caring you exude in your energy will touch the person and uplift them, hopefully if it is right.
▪ You need to not judge the person and keep trying to find the right moment to connect.
▪ Quiet, centred, attentiveness is most likely the posture that will aid a feeling of connection and solidarity. Even so, symptom experience can be so extreme that the person simply cannot feel any affirming experience or good feeling from the interaction, no matter how well-intentioned, because everything hurts so much or is disturbing or the impact and after reaction is so great that it causes deterioration.
▪ The person may need to be left alone to survive and not fit into a rigid regime or needs. Their need for space to cope may be paramount.
▪ If the person indicates that they cannot tolerate carer input in any one moment, this needs to be respected and then worked out with the person how to meet their needs at some other moment.
You need to grasp this idea that a moment in time can make all the difference to the person with Severe ME; that even when something is totally impossible in one moment, it may be achievable in the next. We daily hope for better moments.
Often it may seem as if there is an empty space around the person, in which nothing is possible, yet if you are paying enough attention and are willing, able, gentle and patient enough, there may be a moment in which you can achieve something together.
For more information on the MOMENT approach, please see my book “Severe ME featuring Justice for Karina Hansen”