Before this year’s December holidays, members of the support group I run talked about how they were going to celebrate. Most said it would be low-keyed, close to home but festive. That was an important key. Holidays are a time to side-line caregiving duties long enough to make a good meal, enjoy visitors, family; to laugh, to feel refreshed and prepared for the new year.
But at our recent meeting a member who hadn’t attended for a while 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. Her husband 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 anti-biotics but the condition worsened. A day or so later, he died.
She looked mournfully at the group, “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 began to recount their experiences with unavailable doctors, incidents in hospitals and rehab facilities. 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, “very hard to get hold of but I’ll tell you, he always looks like a million bucks.” The implication was clear; some professionals take care of themselves while families struggle.
Reports of malfeasance are not common, but family members are caught short when facing poor access to doctors or dealing with intractable bureaucracies. Caregivers have to learn to navigate multiple systems 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. These rules can be costly to families.
Determining the cause of an illness or discomfort can be difficult to assess in a person with dementia. A urinary track infection can escalate agitation. Even a person who does not have dementia may become agitated; in both instances they may be viewed as “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 tells 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 an hour of hard listening and sharing some group member said they were appreciative of the information shared, hoping it would not happen to them. Others hoped for less in-fighting with relatives who show up with pronouncements but no offers of help; all longed for more opportunities for opportunities to regroup, refresh.
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.