View Full Version : .A week in the life....

12th December 2012, 10:33
For interest, comment etc.....
11..Visit from advisor [plus carer and student] on paying for care. 3 options - Council, employ PA, employ agency. All options capped at 50pw.
12 Visit from District Nurse for blood test [re riluzole], flu jab and vitamin B12 injection.
Special wedding anniversary - children lay on special celebratory meal at 5 star hotel. All good except disabled toilet facilities. Toilet in Gents or Ladies. Where does man go with lady carer?! Or vice versa. If you go alone, exit door open inwards - can't get out until another user arrives.
Day off
3. Continence nurse to discuss toilet facilities to avoid getting up at night. Solution to be tried is a half way house between an impracticable urine bottle and conveen - a Bainbridge device! Not yet arrived. We'll see.
1030 Own speech therapist to monitor swallowing function and provide thickening powder for drinks.
11 Specialist speech therapist, to assess me for communication aids - to arrive after Christmas.
12.Doctor from electronic assistive technology service to programme IPad to operate all electrics [tv, lights etc] in rooms
I use
9 OT and contractor arrive to adapt downstairs loo for easier access
11 Visit from Consultant in Palliative Care of loca hospice to forward plan future care - day visit; respite visit etc.
12 Visit from MND coordinator to review joined up provision of services and to help prepare living will
3 First visit from Social Worker to assess home care needs and prepare care plan
11 Visit from hospice voluntary worker to get info to chase up lack of response from DWP on application for attendance allowance
3 Visit from Wheelchair service to modify transit chair which is currently too low

Not a lot of time for fun! Torn between gratitude for the care and irritation at invasiveness of it all.

12th December 2012, 11:40
Hi Mel,

sounds like Saturday was a good day and good for your children for getting behind it, no what you mean about the loos when I go out rarely these days have resorted to drink shorts ( dont start Bob) rather than pints to reduce the visits.Not sure about the attendence allowance in so much I was advised when coming of SSP onto ESA that I would need to apply for attendence -then my GP recently completed a DS1500 had a reply from DWP to say no need to apply for attendence-now put in place.Just thinking had a week simular to that last week and felt if nothing else was a destraction and something to think about,also noticed you have a little success on the alterations just wondered how long that process took Mel?


12th December 2012, 18:02
Roy - no luck with a wet room - they've just widened the door to make loo/whb more accessible. Got to go Day Centre for bathing etc. M

13th December 2012, 11:24
Hello Mel,

There was me thinking I was hard done by, you seem to have a full calendar, I hope they have at least given you Christmas off from the schedule , wish you good luck, and sorry you haven't managed the washing facility's at home , no longer surprised by anything now, and good luck with drink thickeners, I have tried them and well can't say it was a nice experience . Still coping with a straw for me.


13th December 2012, 12:49
Hi Mel;
I have too came across the mixed loo problem. I have asked management to guard the door whilst me wife and I go in. Don't worry, just get on and use them. Some weeks are extremely busy, but if they are predictive I don't mind at all.
Look at speech programs for your I Pad. There some cheap or free ones but I think that the Predictive one works very similar to a SL40 lightwriter.
Love Terry

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