The Problem with Holidays

Before this year’s December holidays, members of the support group I run talked about how they were going to celebrate. Low-keyed and close to home was the consensus. But, being a resilient group, they were going make it festive.

We met this past Monday and a member who hadn’t attended for a couple of meetings came. Usually quiet, she needed to talk. Just before Christmas her husband fell, seemed to be ok but a few days later complained of back pain so bad that they took him to the hospital. What followed was a series of disjointed events. The hospital didn’t identify a fracture “but,” a nurse said cheerfully, “at least he doesn’t have pneumonia.” At home he continued to experience unbearable pain so back in the ER where, after more tests, a spinal fracture was discovered. Alarmed, his wife called their doctor repeatedly but didn’t get a return call for a day or so. He was sent to a rehab facility where he declined further; he couldn’t swallow and couldn’t eat. The facility doctor finally came and determined the patient had pneumonia, ordered antibiotics but the condition worsened. A day or so later, he died.

That was awful, the worst. She said, “other than dementia he was healthy.” Her 53-year marriage ended abruptly. Her husband died as a result of a series of missteps.

This news silenced the room but for offers of sympathy.

The floodgates of worry and anger opened and others in the group who experienced problems in hospitals and rehab facilities began to recount their experiences. There were others who had to track doctors down. One daughter said she knew the doctor at her father’s facility worked at other places and had a private practice. “He’s very busy, “she nodded vigorously, “and always hard to get hold of but I’ll tell you, he always looks like a million bucks.” The consensus was that some professionals take care of themselves while families struggle.  

Reports of malfeasance are not common but complaints from family members about poor access to their doctors or dealing with bureaucracies catch them up short; like knowing the difference between being under observation or being admitted to the hospital. With observation, you pay the full price of the stay, even if a person is put in a hospital room and you don’t find that out until the bill comes. Being admitted will cover the stay but hospitals try to avoid it. 

Families caring for an ill person can’t stay on top of cumbersome and sometimes, costly, rules. For those caring for someone with dementia determining the cause of an illness or discomfort can be difficult. A urinary track infection, for example, can escalate agitation in a person with dementia. Even a person who does not have dementia may become agitated; in both instances these people may seen as being “difficult” rather than having an infection.

One member whose husband has Parkinson’s said she learned a long time ago that when her husband is admitted to the hospital she simply says to the staff, “these are his medications, and this is when he has to take them.” Then the nurses comply. While there may be reasons to take some people off all medications, Parkinson’s disease is one that requires a steady schedule of drugs or patients suffer greatly. They are a life-line. 

So, what about these holidays? After more than an hour of hard listening we talked about expectations for the new year. Some group member wished for fewer incidents, more compliance, less anger; others hoped for less in-fighting with relatives who show up with pronouncements but no offers of help; all longed for more opportunities for a break to breathe and regroup.

No trips or grand parties – not even peace on earth. In that moment, they wished for peace within and had I the power, it would be readily granted.