HOW MY CARING ROLE IMPACTS ON MY LIFE

The time has come, or rather a few months ago the time came, to review Ferretfinger's "Care Package" and today his Enablement Officer came around to fill in the part of the form about me, as a carer, and my needs.  This is a good thing but hard to face up to.  So this morning I sat down at the keyboard and wrote an essay on ''How My Caring Role Impacts On My Life".  I thought I would share it so that those who do not have a learning disabled person to care for might understand why we who do sometimes seem a bit frazzled and less than patient.

Ferretfingers, 22, needs constant supervision and is vulnerable because of his communication difficulties.  I cannot do anything without considering its impact on Ferretfingers, and I am always on alert.

When Ferretfingers is at a day centre or out with his 'Personal Assistan', then I have to ensure that either I, or another responsible adult, is at home to see him off and when he gets back.  Which means anything I want or need to do has to be timetabled between 10am and 3pm, unless his father is at home.   
This includes shopping, doctors/dentists appointments, yoga, meetings, meeting friends or anything a woman of my age might reasonably expect to do.  There is always an element of stress fearing I won’t get home in time.

When I go out with Ferretfingers then I am constantly watching him and the people around him.  He loves buying DVDs and collecting brochures, catalogues and dictionaries.  The house is full so I have to try and stop him.  This can be embarrassing, depending on the attitude of other shoppers and shop assistants.  Then there are the starers ...

If his father and I want to go to a social occasion, or just go out, together we have to arrange someone to ‘mind Ferretfingers’.  We seldom socialise together and I usually attend family events alone.  This makes me feel the odd one out and sad:  being aware of people’s pity is also demoralising.

When booking accommodation for family holidays I have to always ensure we have either a family room or 2 twin rooms.  This is so I can sleep in the same room as and supervise Ferretfingers.  Our other son shares a room with his father.  We have never holidayed outside Britain as I don’t think we could cope with airports and the uncertainties and stress of air travel.

Ferretfingers’s aural hypersensitivity means he tries to control all or any music.  We do not play music, or the piano or sing.  I now watch television using cordless headphones so that he can’t hear incidental music or adverts.

I feel responsible for Ferretfingers’s physical welfare.  I make all his appointments, accompany and speak or interpret for him at the dentists or doctors or barbers.  I ensure he puts on clean clothes and cleans his teeth.   

His father supervises bathing and hair washing.  

I do all his laundry and ironing.

When he was a small child this was appropriate and a normal part or parenting.   

This is no longer the case.