Major Tasks

Upon leaving a hospital, home care will be paid for by Medicare or other health insurance plans. For us, Medicare allowed visits from a nurse, speech, occupational and physical therapists, and a social worker. Without seeming to be picky or ungrateful, we noticed that many visiting health services were not uniformly excellent. Our social worker wisely pointed out that we could ask for replacements of the mediocre ones. We did just that and after a time we had a health support team and structure that was great for Sonia. We also employed a companion who cares for Sonia, cooks, does light cleaning and helps to lighten my load

Major Task One: Equipment was needed. We were told to order a bench for the bathtub. Instead, we should have been advised to get one for the stall shower. Getting into an ordinary tub was dangerous and unnecessary compared to walking into a shower stall. We ordered a portable commode-a vital necessity. In the middle of the night, the walk to the toilet was foolish (and, possibly dangerous) when she could get up from bed and do her thing with the least effort and the most safety. Our wheelchair is a work of genius. It rides smoothly, feels comfortable and is sturdy. It weighs 21 pounds and is a bit hard for me to put it in and out of the car (I'm now in my eighties). A "Jay" brand of seat pad is a blessing--it molds to the body. Medicare paid for most of the equipment. We take day-to-day guidance from our therapists. They are more effective at helping with routine problems and equipment.

Major Task Two: Making the Home Safe. Making the home safe for a Stroke Survivor should be comprehensive. In the bathroom, danger lurks in every corner. The floor is usually tile and a fall can cause serious injuries, setting her recovery back many months. First, I removed scatter rugs which slip. I installed bars and handles wherever needed. Sharp edges are padded and we hold her carefully when she walks in the bathroom. Although she walks almost alone with a hemi--walker on carpeting, I never take a chance on hard flooring. Here, too, I try to remove every obstacle in her path. Furniture that is in the way is moved or removed.

• Survivors need to communicate their needs especially in an emergency. Therefore we devised a buzzer system to cover all the places that she inhabits: the dining room, the bed, the piano, the TV chair, the computer room and her art studio.

• Where there is no buzzer for sending or receiving her call, we use a simple walkie-talkie for. we also use it at home when she takes naps. When I go into a store and she is in the car, we use the walkie-talkie. ep At one time, when we did not have 24 hour coverage, she wore an emergency pendant which called for help from an agency in case of emergency. We instituted-speed dialing on the phone she uses at the dining room table where she spends much time.

A calm atmosphere for a stroke survivor is a non-negotiable need. Strokes are enough for a person to bear without unnecessary irritations. We try to live a very structured life. Proper meals are prepared by the companion and we eat nicely. We have friends for lunch or dinner, adding to a normal social life. This does much to even out the difference between life before and after the stroke. The house is always in order and it is my goal to see to it that there are no signs of neglect.

Next: Tasks & Pearls