Comfort

During the first three months of her stay at GVM, Mom was seen in the Emergency Room and/or admitted to the hospital five times.

The reasons for the evaluations varied. The most consistent problem, however, was an increase in frequency of episodes when she would "pass out" after standing.

This problem was not new to Mother. She began to experience this while still at home, but the episodes, now occuring while under professional care at a nursing facility, necessitated a more thorough evaluation once a pattern was established.

She was hospitalized for the third time in October following yet another episode of fainting.

When you stand, gravity causes blood to pool in your legs. This results in a decrease in blood pressure ~ simply put ~ because there is less blood circulating back to your heart to pump. Under normal circumstances, special "baroreceptors" near your heart and in your carotid arteries "sense" this decrease in blood pressure. They then work to instantaneously counteract it by triggering your heart to beat faster, pumping more blood thereby stabilizing your blood pressure. Additionally, these receptors cause your peripheral blood vessels to narrow (constrict) thereby increasing the resistance to blood flow which, in turn, further adds to an increase in pressure. Got that? (I wouldn't blame you if you didn't.)

There are many medical situations which can disrupt a person's natural ability to compensate for low blood pressure. Parkinson's disease, unfortunately, is one such cause.

Parkinson's disease does not discriminate. It has the ability to affect any muscle group ~ including the muscular lining of arterial walls. When the normal process of arterial constriction and relaxation is hampered by this disease, a positional change (from seated to standing) can result in orthostatic or positional hypotension (low blood pressure).

It is this failure to adequately counteract for low blood pressure which caused Mother to pass out when attempting to get up from the bed.

She was seen in the hospital during the October stay by a cardiologist who went on to pronounce her heart "strong," and also made some adjustments to her medications aimed at increasing her blood pressure so as to forestall future events. To date, these interventions have been largely successful.

She was also seen by not one, but two neurologists. Unfortunately for Mother, their pronouncements and prescriptions were a bit of a shock. She was declared to be suffering from "End-Stage Parkinson's," was given "no more than six months to live," and both, independently, made the same recommendation:

Hospice.

I was not prepared for this.

The word comes from the Latin, "hospitium," which, when translated, comes to mean, "guesthouse." Apparently, it was originally described as a "place of shelter for weary and sick travelers returning from religious pilgramages." The modern hospice movement originated in London during the 1960's and was promoted as a "team approach to professional care giving."

Hospice came to the United States in the mid-1970's and now boasts some 3,000 plus programs across the country which offer comprehensive care.

It is designed to give supportive care to people in the final stage of a terminal illness. The focus of hospice care is on comfort and quality of life as opposed to traditional allopathic concerns for "curing" medical illnesses. The overaching goal is to, "offer a system which enables a patient to be comfortable and pain-free so they may live each day left to them fully."

All of these programs use a "multi-disciplinary" approach which includes the services of a physician, nurse, social worker, and clergy in providing care. Additional services may also include pain management; physical and occupational therapy; medical equipment and supplies; and even bereavement counseling.

As previously stated, hospice does NOT aim for a cure of a terminal illness but merely concentrates on providing comfort for any issue which may be germane to an individual's "admitting diagnosis." Outside of Mom's diagnosis of Parkinson's disease, hospice does treat potentially curable conditions such as pneumonia and bladder infections which might very well include brief hospital stays.

I personally feel both of these neurologists acted cavalierly when perfunctorily declaring Mom had no more than six months to live back in October of 2008. To be fair, I believe they were forced to rely on the totality of their professional experiences to make these judgements; there was very little objective information available to either of them.

And, I was guilty of asking the stupid question in the first place.

The fault in my thinking was not realizing they might actually offer up a reply. Yes, I understood Mother's health had clearly been declining over the past year ~ and the process had accelerated during her brief stay at GVM. Despite this, no one had dared make such a cold declaration ~ at least to my knowledge. I also know there was a part of me which accepted the six month window as a real possiblity.

So, while I do know it was an appropriate ~ albeit unanswerable ~ question to ask, I truly wish I had kept my big mouth shut.

Those six months have come and gone, soon to be replaced ~ perhaps ~ by yet another. One might consider it a small victory over the arrogance of physicians who once pretended at "playing God" by declaring a near date-certain for her demise.

Yes, there most certainly is a selfish part of me which is happy knowing Mom beat their odds. But this is countered by an even greater understanding that the woman we love continues to suffer and no longer lives any semblance of the life she once envisioned for herself.

Hospice or no hospice, there is NO comfort in this.