Welcome to our site concerning quadriplegic care at home. Issues we will be discussing include: medical home care, private home care, special issues related to disabled spouses, being successful patient advocates, and — in many cases — our reflections concerning multiple sclerosis diagnosis and multiple sclerosis treatment.
At the outset, note that this is not intended to be medical advice. I am a retired Ph.D. physicist, not an M.D. physician. I will be telling you what has and has not worked for my wife, Tina Su Cooper, who was paraplegic from 1994-2004 and quadriplegic, ventilator-dependent, fed and medicated through a gastric tube, from 2004 to the present. She has received successful quadriplegic care in our home with round-the-clock nursing paid for by my IBM retiree medical benefits for the past seven years.
We started quadriplegic care at home when Tina was released from the hospital in guarded condition, due to late-stage multiple sclerosis (MS), given the choice of hospice or home care, accept death or fight to live. We chose to fight, and she has lived another seven years, rather than the few months predicted.
Quadriplegic care has medical, psychological, logistical, and financial implications. Pressure sores [bed sores] and respiratory and system infections, depression, lack of personnel or supplies or equipment, poverty or bankruptcy … all threaten the patient. All have serious consequences for the caregivers. All are topics appropriate to this site.
Pressure sores can be prevented by keeping the patient clean and dry, moving the patient frequently so that the body weight is carried by different areas at different times. We have a mattress with a checkerboard pattern and a pump that alternately inflates the “red” squares and then the “black” squares, over a five-to-ten minute cycle.
Our risk of respiratory infections is reduced by requiring flu shots, by instructing the nurses not to come if they have colds, and by continual monitoring of the patient’s pulse rate, breathing rate, and body temperature, all of which went up dramatically in a few hours during our several instances of respiratory infection that led to hospitalization, typically for a week at a time.
Fighting potential depression must be a priority. Our patient gets love, affection, attention, and Prozac. Tina has a wall TV easily visible, and hundreds of CDs and DVDs and cable TV channels, and she enjoys these. She is appreciative and her attitude is appreciated. “Tina comes first but everybody counts.” She has been my true love of almost fifty years. All this helps!
For logistical support, we retained our home health aid, Barbara George, who was hired in January 2004, and whose care duties have been largely supplanted by the skilled nursing care Tina now receives. Barbara now helps greatly with home management and with the ordering and keeping track of the supplies we need for Tina’s quadriplegic care.
The cost of nursing care in our home is about $1000 per day. If I used a nurse only eight hours per day, an aide for another eight hours, and did the eight hours overnight myself, this cost would be about $500 per day. We are fortunate and grateful that we have IBM’s retirees’ medical benefits to cover this. Without them, we would run through savings, then mortgage the house, then what ? I am sixty-eight; it is difficult for me to get work that would pay such costs. The government health plan [“Obamacare”] will not provide such intensive and extensive nursing services, and some companies have shifted their retirees from the company plan to the government plan.
I plan to add contact information for valuable references as this site develops.
Those wishing to know more about Tina [born Su Ting-ting in China in 1944] and me are invited to visit our site http://tingandi.com that has information about us and about our book, Ting and I: A Memoir of Love, Courage, and Devotion, available through that site or amazon.com, bn.com, or outskirtspress.com. My other blog is http://douglaswinslowcooper.blogspot.com .