Taking care after paralysis

One of the events no one is ever ready for, even when we know it could be part of the aging process, is paralysis. Suddenly, a room, a bed is converted into a "war zone" of medicines, cleaning fluids, cotton, gauze, bottles, feeders, napkins, rubber or plastic mattress protectors, etc. It's devastating for the care-giver, who gets ‘fed up’ sooner rather than later. Of course, life must go on; the patient must be cared for, but how? Preparation and management help. Families and couples come up with original ideas to make life easier, but some general tips help, too.

Partially paralysed patients

If the "patient" is not completely immobile, she [for reasons of convenience we use this gender] must be encouraged to do whatever she can on his own. For example, if the legs are affected, but the hands are ok, fix a ‘‘monkey bar’’ to the bed that will allow her to get up on her own. If the left side is paralysed, but the right is ok, she must do exercises so that she can walk around. Get a good occupational therapist to recommend equipment that can be installed to make her more independent. They need not be expensive things:

• Toothbrushes with long and thick handles
• levers that can be fixed to taps to make turning them easier
• Special beakers and spoons that allow easy grasping and swallowing
• Smooth [and preferably folding] wheelchairs
• Cardiac tables that can swivel onto the bed at mealtimes.

If there is resistance to their use in the beginning, one has to alternately be firm and gentle until the person gets used to being independent, as much as possible. This not only gives a psychological boost to the patient, but gives the care-giver respite. It is very important to do physiotherapy or general exercises [massage is good, but it's a passive method, where the patient isn't putting in effort] as many times a day as is recommended. Vigorous breathing exercises are important. An outing a day keeps the spirits high, and allows social interaction. It could be in the corridor of your floor or the compound of the colony or building. If nothing else is possible, a window or balcony with a view would do.

Completely paralysed patients

If the patient is bed-ridden, then the needs are many, and the care more intensive. One of the major requirements, here, is a hospital bed [they're available on hire] that has moveable parts, so that the patient can be raised or lowered. Such patients have to be turned every half or one hour, so that they don't get bedsores. Bedsores are easy to prevent, and difficult to treat, so prevention really is better than cure. The skin near the hip joints, shoulders, elbows, etc, should be examined every time the patient is turned, for they are trouble-spots. Check with your doctor or nurse to identify redness, tenderness and pain.

Never compromise on the quality of sheets, covers, urine pots, bedpans, feeding utensils, even oils and creams [for the aged have frail skins which need this for nourishment]. If the patient has a urinary catheter or a stomach bag, the emptying would have to be done regularly to avoid "accidental" spills. The spilled mess involves more work to clean up. To keep the smell and flies away, ask any hospital what cleaning fluid to use. Domestic cleaners aren't as effective. It's a good idea to have all conveniences [down to fresh drinking water] in a small cupboard or table close to the patient's bed so that trips to the kitchen are lessened. Keep a checklist handy, and go through it twice a day, so that no ‘emergencies’ arise. If a patient can be lifted onto a wheelchair and moved out for an evening ‘‘stroll’’, so be it. Otherwise, do invite friends, neighbours, relatives for an occasional tea. It's good for the patient's and the care-giver's social health.

Medicine schedules

Either for the semi or for the entirely paralysed patient, a medicine schedule has to be maintained. If one can afford it, good help should be employed. Better to spend your savings on your comfort at a time you need it so, than leave it as a legacy. If you can't afford it, rope in a reliable relative or two who can come in regularly. If you need help, ask for it. Maintain a contact with a nursing home that's close by, should the patient require injections or oxygen, or some other medical help that would come in handy. Medical and nursing needs apart, it's the daily, routine care, that one has to organise.

Check with a dietician what the patient's nutritional needs are, and in what form they can be given. If swallowing is a problem, food may have to be run through a blender before consuming. Soft muslin cloth, a good fan, plenty of pillows, stockings, a bed near a window… these are so important.

But more important than all of those is the health of the caregiver. Looking after a paralysed patient takes its toll. Health is only one of the aspects. Managing the patient isn't the only job that has to be done. Bank work? Shopping? Leaving the patient alone is not recommended, but sometimes inevitable. The trips should be minutely planned so that the time spent outside the house is reduced and definite. These days there are many shops/banks that provide home delivery/facility, and such services should be used to the optimum. Keep the radio going - music helps develop an 'atmosphere'. Keep the old routine of newspaper.

Smile and do the duty

Ah, and lastly, keep cheerful. It's hard for the patient to be so, but if the caregiver is smiling, the patient keeps well. And, so I'm told by experienced elders, it makes the chores easier to handle. Caregivers are bound by a tight framework, but that doesn't mean they’re imprisoned. It's important to celebrate festivals, birthdays, even go for a programme occasionally. That is why it's important to ask for help when needed. And remember, we live only once. If you live right, living once is enough. At the end of the race, there's a strange satisfaction in duty well done. Caring for an ailing family member is one of those duties.