Being A Caregiver

My daily routine is bracketed by caring for my 20 year old son, Brennen, who has Duchenne Muscular Dystrophy.

Brennen is a sophomore at SJSU, majoring in Film/Television/Radio. He has used a power wheelchair for about 10 years, and has been completely non-ambulatory for 11 years. He has been using ventilation assistance for two years, first a Bi-Pap at night, and, recently, non-invasive (i.e. through a mask or mouthpiece, not a tracheostomy) ventilation continuously at night and on-demand during the day. Since DMD affects the diaphram, heart, and skeletal muscles, B has full feeling in his body, but his breathing, blood circulation, and strength are all impacted. Because this condition is progressive, the degree of assistance he requires has to be adjusted from time to time.

You have to imagine much of the routine below punctuated with very lively discussion about films, music, books, etc.

Here is a typical morning:

8:00 - Get Brennen up. This includes: physical therapy on legs, arms, and hands; strap on back brace; dress him; use Hoyer lift to get him into his chair; treat/prevent pressure sores on feet; put on support socks and foot splints.
8:45 - Feed B breakfast.
9:15 - Using ceiling lift, take Brennen to the bathroom.
9:30 - Get B back in chair, hook up external catheter.
9:40 - Brush B's teeth and wash his face.
9:50 - Done.

There are two evening routines: shower and non-shower. A typical shower evening:

8:30 - Feed B evening snack, brush and floss.
8:50 - Nebulizer and chest thumping.
9:15 - Bathroom (use ceiling lift) - "B's Quality Reading Time".
9:45 - Shower (ceiling lift and reclining shower chair).
10:30 - Put B in bed, physical therapy, fit mask for ventilation, bolster and position for comfort.
11:00 - Lights out.

For non-shower evenings, substitute sponge bath for shower. The routine is 1/2 hour shorter, so it generally starts at 9pm.