The Circle of Obstacles: When Your Spouse is Diagnosed with a Terminal Illness

(c) By Roque Pizarro

We live in an era that has produced medical advancements in cardiac surgery, orthopedic surgery and transplants of various organs. Medical advancement that have saved and prolonged lives has been unable to find either treatment or cure for terminal diseases. It is difficult to accept the fact that you can go to the doctor in this modern era with your wife and be told that she has a debilitating, incurable, untreatable terminal disease.

After nearly two years and five (5) Neurologists that relied on painful tests such as four (4) spinal taps, and five (5) EMG’s. An EMG is a neurological test where needles are inserted into the patient's various limbs to test for nerve damage. Other test used was MRI’s, and muscle biopsy’s -- all to determine my wife’s illness.

Some of the diagnoses my wife was thought to possibly have, were Multiple Sclerosis, Multi Focal Motor Neuropathy, and MitroCandrial Disease. None of these named diseases are illnesses you want your wife or family member to have or experience. They are diseases that are in the motor neuron group and are incurable and difficult to treat. My wife ended up being diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as the Lou Gherig Disease. ALS is a debilitating incurable disease that affects all the voluntary muscles in the body such as the arms, legs, diaphragm and neck.

The effects of ALS disables the body from functioning, causing the patient with the inability to ambulate and they become wheel chair or bed bound. Some patients end up being fed by feeding place in the stomach, and they need assistance with breathing by machines such as a bi-pap, coughing machine and a ventilator becomes necessary... Many patients fear having to have a tracheotomy, which is a procedure where a hole is made (cut) in the breathing area of the throat and a tube is inserted to assist with the patient's breathing. When a patient has tracheotomy, it usually leads to the patient's not being able to breath. From my readings and research on the subject, the prognosis is usually 3-5 years.

Once we were given the diagnosis of ALS, our total family lives (my wife and I, her family, and our children) completed changed. We were able to get twelve (12) hours homecare service (seven (7) days per week), and access to transportation needs, as well as the use of equipment, provided through the ALS Association / New York Chapter. We started to attend the ALS support group in order to meet other care givers and patients, and build-up a support system. We wanted to learn more about the disease, its affects, and any resources or information that can be helpful. The ALS Association loaned us a power char, a transport chair and shower commode chair.

During the early months, my wife's mental status changed and she developed depression, anxiety and anger. She was no longer able to walk or stand which took away her sense of independence. She had to be carried up and down our second floor stairs, which has fifteen (15) steps and is very steep. To use the bathroom, she has to be assisted by me or the home attendant - or both. We had to undress and dress her. A few times, we didn’t make it to the bathroom on time, and when that happens, we had to undress and dress her, as well as clean up after her. Incidents like toileting, and going up and down the stairs, impeded our desire to go out.

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