Don't Lose Heart

In January 2006, my wife, her parents and I were involved in a roll-over accident that resulted in the death of my mother-in-law and the permanent paralysis of my wife, who is now a quadriplegic. Immediately after her spinal surgery, she was moved to a rehabilitation center where she spent the next 3 months going through intense physical and occupational therapy. Her spinal injury was just a little lower than Christopher Reeve’s, so, luckily, she did not require breathing tubes and oxygen tanks.

During that 3 month period, I had to become an expert in quadriplegia and at the same time, offer whatever support I could to my wife. Concurrently, I had to completely modify our entire house with ramps, wider doors, a roll-in shower and many other things so that my wife would be able to get into the house and move from room to room. We knew early on that she would have to be in a power wheelchair and that she would not be able to use a manual one. (Even after 4 years, it never ceases to amaze me how so many people assume that all wheelchairs are the same — and they are most definitely not the same.)

I took a leave of absence from work and worked long days redoing our finances so that my wife would qualify for state medicaid / disability assistance. I learned how to be a caregiver and how to perform all nursing functions that I would need to do after she went home. I learned about catheters, pressure sores, bowel care, blood pressure issues, autonomic dysreflexia, UTIs, dressing wounds, transferring, how to dress and undress someone who cannot move, range-of-motion exercises, medication management; and on and on. I had to because, even in a best-case scenario, I knew I would be my wife’s main caregiver.

There were countless legal and insurance issues to deal with. I had to find doctors (primary care, neurologist, urologist, etc.) who were experienced in dealing with quads. I had to purchase a ramp van for transportation so that she wouldn’t be home-bound. I had to buy all kinds of assistive devices and equipment (shower chair, lift, transfer boards, special eating utensils, etc.) and the many different daily supplies I would need (pads, briefs, wipes, catheter supplies, etc.) so that I would be able to take care of her when she came home.

Via our state’s medicaid program, I engaged two agencies to provide in-home nursing and in-home attendant care. The first day that I returned to work after my wife came home, the attendant dropped her in the shower. I quickly saw that I would have to stop working so that I could be closer to home in case of emergency. I quit my job and retired.

Over the last 4 years, we have gone through over 25 in-home attendants. We have had money and jewelry stolen and have had caregivers get into auto accidents in our van. These folks who have the important jobs of taking care of our loved ones get paid $10 or less per hour, so it is no wonder that highly-qualified and experienced people are not going to want this job. Each year, the state medicaid money allocated to my wife’s disability for in-home services is decreased, which places more of a burden on me. My wife cannot be left alone for more than a hour or so at a time, and if she were to choke while someone is not present, she would most likely not survive. Literally, the only time I leave the house is when someone else is with her.

On the plus side, we have gone on 3 cruises (Mexico, Hawaii and Alaska). My wife volunteers once a week at the pre-school she worked at prior to the accident. We go out for dinner, to movies, to concerts. Although her stamina and energy seems to be diminishing over time, she maintains a great attitude and spirit.

We do have family support, but everyone has their own, busy lives so it is difficult to impose, but they help when they can. The children are all grown and out of the house. According to national statistics, the vast majority of spouses end up leaving their marriages after their partner is permanently disabled with this kind of injury. I am one of the few who has not left. And, being a caregiver is one of the most stressful jobs that a person can have. The suicide rate amongst caregivers is extremely high. The intense emotional and psychological issues associated with being a caregiver for a loved one cannot be overstated.

One of the most important things I would advise someone who is a caregiver is to make time for themselves. Find something to do — a hobby or something. Read a book, listen to music, watch movies, but do something for yourself. If you don’t, chances are that you will significantly decrease your lifespan. And, don’t be afraid to ask for help.

Dwayne W.
Phoenix, Arizona