One of the most useful tools we have kept up with is a personal journal. We do not make daily entries into this journal, but we do keep up with behavioral changes, sickness or medical problems, and personal notes as the need presents itself. By keeping up with events, we can track the progression of the disease and have a medical reference that is a help to medical personnel. The nurse that makes a house visit each month also makes an entry into this journal with such information as Blood Pressure, Pulse, overall physical condition as well as any shots or medications she has been authorized to administer.
Another useful tool that has proved helpful is a daily form we made that keeps up with such things as medications and time given to patient, eating habits, behavioral patterns, and bowel and bladder functions. To view this form click HERE.
A walker can be used to help support the patient in a sitting position. Pillows can be added to the back for comfort and to the side bars to help hold the patient in an upright position. In the picture above, you will notice that we have added a wide red belt across the front to prevent Mama from falling forward when she rocks back and forth. The walker is held in place by one of the couch's cushions. The cushion is first removed and the walker set in place. The cushion is then replaced on the couch locking it in place.
As the disease progresses, it will become more difficult to wash the patient's hair. The above device was made by taking a small Rubbermaid tub and cutting a portion out of one side. A piece of foam (in this case, a piece of a swimming pool flotation noodle) is cut to size and then placed around the cut-out. The patient's neck can then rest on the foam for comfort while hair is being washed in a laying down position. It will be necessary to slide the bed mattress down from the top to allow room to put the tub in place. Bed pads can be placed over the top part of the mattress to prevent the mattress from getting wet. The tub should not be filled with water. Instead, it should be used to catch rinse water which is poured over the head from a container.