This has been our progression in the last year with my mother:
A. Usually continent while awake, with regular toileting. Incontinent when in bed, which is: rest after breakfast between 9am-11am, afternoon rest 2pm-5pm, night-time 8pm until 8am. Heavy duty pads used in the daytime inside knickers with pull-ups at night. Additionally: waterproof mattress protectors, duvet protectors, pillow protectors, and disposable bed pads and Kylie pads under the bottom sheet. Waterproof washable chair pads needed due to occasional daytime incontinence.
B. Increasing fluid retention during the day but more incontinence at night as her body releases the fluid built up in her tissues. Frequent night calls. Carer changing and washing her because she would walk to her toilet, wet on the floor, walk the urine into her bedsocks and then transfer the urine to her bed.
C. Inability to self-toilet safely at any time. Carer needed to deal with night-time visits to toilet, where she had invariably already wet her pull-ups and had woken as if to need the toilet but actually needed changing.
D. Increase in night-time urine volume. Often wetting the bed despite the highest absorbancy of pull-ups and Kylie sheets. Needing changing at least once a night, often the whole bed and night clothes, plus washing and drying her body.
E. Permanent incontinence, including daytime. Pads replaced by pull-ups at all times. NHS supplying pull-ups instead of pads (Yes, we are lucky). Purchase of additional Kylies, supplementary pull-ups, Tena wash cream, disposable gloves and aprons.
F. Breakdown of tumble dryer due to a carer drying Kylie sheets in it. This is a fire hazard because of the PVC backing, and the urine was inadequately removed by laundering, causing urine contamination of the whole machine.
G. Replacement of non-bio powder with biological washing liquid in order to kill the bacteria on the laundry. Purchase of wardrobe storage hangers, extra colour-coded towels and flannels, sheets etc. to create complete separation of Ma's laundry from that of other people living in the house.
H. Precise instructions for laundry added to care plan. Some carers would wash at 40 degrees on quick wash programmes (completely inadequate) and many don't know how to use a tumble dryer because they don't use them in their country of origin (many are South Africans). Common sense would tell people to keep urine contaminated laundry loads separate, but some people don't seem to have this common sense and need instruction.
I. Instructions to carers to deep-clean Ma's en suite bathroom to remove the funky smell that builds up despite daily cleaning. Walls, floor, toilet, basin, waste bin to be washed down with bleach solution. Bath mats, towels and flannels to be changed and washed at high temperatures after every use.
I currently feel like I'm still not on top of things, because I only visit every few weeks. I don't feel that everyone has a grasp of appropriate hygeine. It is like running a care home for one resident, without sufficient experience on my part as the manager. I am constantly playing catch-up. And, currently, we do not have to deal with faecal incontinence. My message is to be prepared, and to expect it to keep getting worse.