- 20th April 2020
- Posted by: CILNI
- Category: Blog
Read our guest blog by Tom Coard, who writes about caring for his daughter with profound and multiple learning difficulties:
Our eldest daughter was diagnosed as PMLD (profound and multiple learning disabilities) when she was just two years old. She is now 34 years old – significantly older than we had first expected her to be with us because a large number of the girls we first met when we encountered the condition have sadly died. But let’s not be morbid about it.
Looking after our daughter has brought many challenges over the years. She is to all intents and purposes as dependent as a newborn who needs every aspect of her personal care done for her. This includes changing nappy pads regularly, ensuring that she eats properly (she is fed a pureed diet and needs her drinks thickened for fear of choking), lifted or hoisted from her wheelchair to bed for a change of position and kept comfortable in alternative seating options with cushions and wedges.
In the early stages of learning to cope with her needs, we did find it really challenging because she cannot speak and therefore cried and screamed a lot. There was a lot of guesswork involved in trying to determine if she was hungry, needed changing, headache, period pain, or just downright frustration with the world. Thankfully she has settled down now and is much more at peace with the world.
At age three she had surgery for a hiatus hernia because feeding her was always accompanied with vomiting immediately afterward. At thirteen she had a spinal fusion to help correct curvature of her spine. This was a bit more difficult to manage at home, postoperatively, but in just two months she was back in school.
Her day to day management is time-consuming because feeding can sometimes be really slow. She needs to be encouraged to swallow because lip closure is poor. Feeding is messy.
Daily routine generally involves giving her breakfast first and then shower and dress. This can take up to an hour. Regular drinks to keep her hydrated throughout the day and at mealtimes.
Her drug regime for seizure management is administered at breakfast and supper time. We would put the tablets in Weetabix because we can see them go in. Liquid meds don’t work as effectively because of the poor lip closure.
Whilst there have been occasions when weight management has caused some concern with medics we have resisted efforts to go down the “peg tube” route for several reasons. One obvious one is the potential for infection at the open wound site. She really enjoys the social aspect of sitting at the table with everyone and although the medics suggested that peg feeding would be used as a supplement we were fearful that it would become the primary route for the people looking after her in daycare; it would be easier to plug her in as opposed to persevere with spoon-feeding.
From a personal perspective, I have found that it is not always a case of accepting the first option that is offered by the social care system. I know that provision is sometimes patchy but when parents and carers are often the only voice for those with PMLD, professionals understand that you are the person best placed to know how to look after your loved one.