The MOMENT approach, an extract from our forthcoming book : How to care for Someone with Severe ME
LL THAT WE HAVE been advocating finds expression in our :MOMENT approach :
MAXIMISING OPPORTUNITY to MEET NEED TENDERLY.
This is your primary aim, because the person with severe ME is :
- extremely hypersensitive
- easily exhausted
- constantly experiencing their symptoms
- not experiencing the world and the immediate environment in the same way that you are.
To maximize any opportunity to help the person in a gentle and tender manner, you need to be flexible, compassionate, sensitive , personally aware and attentive. In Severe ME, is never really possible to know from moment to moment, whether any thought, action or interaction is possible.
Experience has taught us that it is not possible to imposes external expectations and demands ; the illness does not allow the person to comply with routine, rigidity, imposition or particular time frames. To apply external pressure or to expect a person with Severe ME to fit into any routine or expectation is unrealistic.
There is a massive delay between will, hope and functional ability, in Severe ME will power alone cannot change the person's physical reality or disease, no matter how much the person may want to do a particular thing .To maximize the opportunity to interact with, physically help and support the person with Severe ME or to help increase their quality of life, you need to take a moment-by-moment approach and be flexible.You cannot force the person and they simply cannot force themselves .
Often it may seem as if there is an empty space around the person, in which nothing is possible ; perhaps 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. It is essential to remember that with ME there will always be a post exertional impact that needs always to be considered and taken into account.
The moment-by-moment approach will often refer to 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 look 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.
The change in ability to cope may be very subtle, it may take days, weeks, months to achieve even the simplest thing like washing your hair, writing a letter.
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. The role and the relationship of the carer are key in changing the impact of the disease upon the person's life. The caregiver becomes a link between the outside world and ME world. It is so important that the relationship that the caregiver has with the person with Severe ME is hopeful, uplifting valuing and validating .
The caregiver potentially makes the difference between a totally hostile environment and a positive hopeful moment.
The MOMENT approach requires personal maturity and great commitment. You wait upon the person to indicate their ability to accept help and you watch out, with awareness and knowledge to make sure that when that moment comes, you are ready and available. The MOMENT approach is rooted in a value system that believes in the integrity and equality of person-hood of the sick person and a deep belief in the human spirit to triumph over adversity.
One of the dangers of living with and helping someone with Severe ME is despair. A personal value base, motivated by love and the valuing of life, underpins the moment approach.. Without an intrinsic belief in the value of life, despair can overwhelm and negate many opportunities and moments for interaction.
Fundamentally, the MOMENT approach is a life- bringing approach, deeply respecting the person with Severe ME, who has most likely been disrespected and disregarded medically, socially and politically.
The caregiver's role is incredibly valuable and you should never underestimate its importance in the person's life. Embracing the moment approach should help you to have the best chance of enabling the person and enriching the relationship between you both. If you keep missing the moment, it is going to do more harm than good and not be satisfactory for either of you.
(Greg Crowhurst : From our forthcoming book : How to Care for Someone with Severe ME)