I was looking online for caregiver support groups for people dealing with loved ones who are diagnosed schizophrenics when I found an article with some very surprising information that explained a lot about Rodger's (my father-in-law) myriad illnesses.
Realization dawned on me as I reread the list of ailments that patients with schizophrenia often have to cope with as they age: Wow, he could have been a textbook case.
I felt very alone when caring for Rodger. And, I must admit, I believed our situation was special. It was more complicated than simple dementia or Alzheimer's disease. As if either one of those illnesses are anything less than devastating to our loved ones or us.
I hope those of you reading this will forgive me for the arrogance of my assumptions at that time. It was born of ignorance and fatigue and the overwhelming hope that most people are not as severely stricken as he was.
Unfortunately, the more I learn from caregivers the more I understand the depth and breadth of suffering from these terrible diseases and how many are dealing with them now.
Multiple physical and mental issues
The inspiration for this post came in an article dated Friday, May 30, 2014 in Health Day News. The opening line reads: "Older adults who have schizophrenia appear to face a higher risk of getting dementia, new research suggests."
According to the article, researchers discovered that dementia occurs twice as often in patients with schizophrenia. Rodger was among that group.
The same research indicates that patients with schizophrenia have higher rates of lung problems, congestive heart failure and thyroid problems.
Rodger had chronic obstructive pulmonary disease (COPD), congestive heart failure and took medication for his malfunctioning thyroid. He also had Parkinson's disease, which also often leads to dementia and difficulty swallowing. Rodger had severe dysphagia. All his food had to be pureed and all his liquids had to be thickened to the consistency of honey. He was always at risk of aspiration pneumonia and contracted it several times, each episode weakening him more.
It's no surprise that his body eventually gave out. The miracle is that he lived as long as he did.
The lead researcher of the article I was reading, Hugh Hendrie, a Regenstrief Institute investigator and a scientist at the Indiana University Center for Aging Research, said, "The good news is those with schizophrenia are living longer; the bad news is, they are getting more of the serious physical illnesses than other people. Health care use was higher in those with schizophrenia, which wasn't a surprise, the researchers found. But it was surprising that those patients' admissions to hospital were almost always for physical illness, not the mental illness."
What is needed, Hendrie added, is a health care system that integrates the mental health and physical health services needed by someone with schizophrenia.
I wish they had known
I heartily agree with the need for that.
Rodger was discharged from the psychiatric ward after a devastating psychotic break with a severe case of pneumonia. He ended up in the ICU two days later.
When he was on the medical ward being treated for pneumonia, nurses were unaware of his psychiatric history. He hid his antipsychotic medication in his cheek and spit it out when hospital personnel left the room.
It wasn't until I recognized the symptoms and insisted on a meeting with all his doctors and the patient advocate that both his mental and physical illnesses were brought under control again. Either illness, if left unrecognized and untreated, could have led to his death much earlier than it occurred.
If they'd known the information in this study, Rodger's doctors and nurses could have been watching for symptoms of these complications and made me, his caregiver, aware of them as well.
I wish I had known
While it wouldn't have changed the eventual outcome, having the information in that article might also have reduced the guilt and anxiety I felt each time another illness struck. With every new diagnosis, I questioned myself as a caregiver and a daughter-in-law.
What was I doing wrong? What more could I do to protect him? What was I missing that could help him avoid another setback? Would I not have had migraine headaches and panic attacks if I had known what to expect and that the insidious progression had nothing to do with the care he received at home?
I'll never know.
I can't help but wonder how many doctors treating elderly patients with schizophrenia are aware of this information and how many are sharing it with their patient's caregivers, sparing them from being in the position to say, "I wish I had known."
If your loved one has a history of schizophrenia, I hope this information helps you understand a bit more about what is happening and helps you prepare for what you may face in the future. I'd hate to think of anyone else having to say, "I wish I had known."