My sister has a severe form of MS. She is 45, doubly incontinent, virtually a quadraplegic, with no speech - except for a deep moan to indicate she needs something. She has FANTASTIC carers during the day and is supported by my parents - coming up to their 80th Birthday - her two twin kids (both at Uni) and myself. That sets the scene.
I think the thing I find most frustrating is the lack of good communication. She has speech therapists but her speech has gone. Knowing what she wants is so hard to fathom and upsetting when we clearly can’t get it. I can just see her giving up trying to tell us at times. We ask closed questions and she blinks in response but this is tiring for her after a while. The speech therapist has created a great communication book to enable anyone to go through a list of things that she might be trying to say, but this is still a slow and laborious process and very hit and miss.
We’ve investigated the use of some communication devices and even had one on loan. However my sister’s lack of movement makes these impossible to use. Even the use of blink sensitive glasses didn’t work as she got tired blinking and despite adjusting the sensitivity of the equipment, it was unable to distinguish between a ‘normal’ blink and one attempting to activate the communication device.
I’m rambling a little. I guess I just wanted to shave my frustration…her frustration too. I’m afraid that we’ll go through the motions of personal care, feeding, hugs, talking to her but just stop trying to achieve the important two way conversations which is such an important part of any interaction. I just have this feeling that she is screaming inside to say so much, but we just dont get it…