Difficult Decisions in an Impossible Situation
It has been two and a half years since Hubby passed away, and the experiences which I have shared with my readers are embedded in the fibers of my being. Although I have found new avenues of fulfillment for myself in Hubby’s absence, my commitment to those of you caring for a loved one with dementia has not changed one iota. Thus, I write this additional chapter hoping that my readers will not ever need to consider its message.
There is a condition which patients with cognitive impairment experience when they are suddenly placed into a hospital in a crisis of care. It is called “Hospital Delirium.” I have witnessed it numerous times when Hubby was taken by ambulance to hospital either after a serious fall or when experiencing a TIA, a mini-stroke. Our loved ones, in their mental decline, are not regular patients. They cannot adapt to the changes around them. They are terrified by new surroundings. They do not know who all these people are who are sticking needles into them, attaching tubes, moving them, speaking to them and their family members, touching their bodies.
For most of us, this is not pleasant to experience, but we understand that in a health emergency, this care is necessary. But they do not understand. Within hours, our loved one will likely become agitated, and will want to return home. In my case, Hubby put on his clothes and demanded to leave the secure stroke unit where he was being observed. When we finally coaxed him back into hospital garb, I had to hide the clothes from sight. That did not stop him from becoming delusional and angry. It did not stop him from tearing out the needles and tubes that the nurses had inserted into his body. It did not stop him from threatening the staff with his walking cane. Once in this state of total anxiety and confusion, there is absolutely nothing which can calm them. I remember begging the nurses to give him medication to relax him, but they needed to wait until the doctor on call would approve the request, and by then, the medication barely helped reduce his fury. When I implored the doctor to help us, his response was that the only solution would be to take Hubby out of the hospital and return home. Only being in his familiar surroundings would calm his brain and allow him to return to his previous sweet, non-aggressive, albeit confused, self.
This information is being shared with you now because it is an important concept to internalize when forced to make life and death decisions on behalf of our loved one in crisis. A recent situation with a close friend has brought all of these thoughts to the surface, and I realize just how important it is to share them, hoping that they will be of value at some future date.
Susan’s (name changed) husband has had cognitive decline for many years. He is now 92 years of age, and has been sleeping excessively, preferring to stay asleep than to participate in his day. His wife forces him to join her for certain events, encouraging him to dress and eat meals. He has been receding from life for a while now. Two weeks ago, he joined friends who arrived for dinner at their home, and while they were visiting, he “blacked out.” His full body weight hit the tiles and his head was injured with blood pouring from his wounds. The emergency services were called and they whisked Susan and her husband to the hospital. He had multiple C.T. scans and X-rays, showing inter-cranial bleeding, broken bones at the top of his spine, pneumonia from aspirated food, physical contusions. The medical establishment had a very complicated condition to assess and Susan was stunned at how their lives had been turned upside down in minutes.
Once the patient was assigned a bed in the Critical Care Unit of the hospital, Susan’s doctors suggested to Susan that she should “let him go.” She was in shock. How could this be happening? How could she make such a decision when only moments ago, he had been status-quo, enjoying company at his dining table? The doctors did not explain why it would be best to “let him go.” Susan responded “No, I want him alive!” Of course she did. She wanted her husband to be free of this trauma and to return to how he was that very evening.
The doctors accepted her response for the moment. Within days, they decided to operate on his broken neck bones, which they warned would leave him unable to move his head to the right or to the left. After the surgery, they informed Susan that they were relieved that her husband did not come out of the surgery as a quadriplegic – operating on the spinal cord area is extremely dangerous. Susan’s husband had survived the surgery, although he had only opened his eyes a few times in many days. He was unable to speak because he had been intubated. He was unable to breathe on his own. He was being treated with antibiotics for the pneumonia, which had occurred from his aspirating food that same evening. There was no guarantee that the treatment would be sufficient to save his life.
Once the anesthesia from the surgery had worn off, even though pain medication was administered through his I.V. tubes, he became agitated again. Susan did not want to be specific about how that mental state became evident, but I know first-hand exactly how the delirium manifests itself. It means that the patient is angry, frightened, confused, and can pull their clothes or become aggressive. In our situation, Hubby terrified the hospital staff with his aggression, and the ultimate result is that both my Hubby then, and Susan’s husband, were ultimately restrained by hospital orderlies, their wrists tied to the metal bars on either side of the hospital bed. The automatic reaction of the patient with hospital delirium is to try to forcibly get out of the bed, thrusting their legs to the side over and over again, therefore bruising their thighs and exhausting themselves from the effort. Calming medication can be given through an I.V. if the patient has not already pulled out the tubes entering his body and if there is a doctor available to write the prescription. Before administered, hell has broken out for all involved.
The doctors at the hospital informed Susan that they needed her to sign a D.N.R. order because if her husband took a further turn for the worst, they would be unwilling to resuscitate him. In the meanwhile, the medicated patient will either become comatose from the meds, or in a purgatory that only delirium can inflict on one’s soul. This delirium was inevitable, not because he is old, but because of his dementia. The doctors should have been honest with Susan about the prognosis for his future condition when advising her. The delirium could only be relieved if her husband could return to his familiar surroundings. That is impossible. He can neither breathe on his own nor ingest food. A food tube will be inserted into his stomach to replace the one which now enters through his nostrils to reach his stomach. He requires 24-hour medical attention. The delirium will continue and he will be experiencing a living hell. Have you ever heard any of this from anyone? Neither had I. It was necessary to live through the experience to understand it.
Is this what we mean when we say we “want him alive?” No. Susan later understood that if there was to be no quality of life for her husband, then it would be kind to “let him go.” In contrast to our classic way of thinking, it is cruel not to do so. No one wants to be cruel to someone they love.
The Hippocratic oath is taken seriously by the medical profession. It is their mandate to preserve life. It is also however, their responsibility to advise as to what that life will likely encompass, at the end of the procedures, treatments, medications, X-rays and rehabilitation.
G-d gives life, and takes it away when the time has come. It is we mortals who sometimes obstruct his plans with the best of intentions. Facing the ramifications of hospital delirium for a critical patient with cognitive decline is unlike the normal considerations one must address in a similar crisis. Understanding this agonizing condition will make the decisions necessarily taken less difficult for all concerned. These are my thoughts, based on my experiences. If you have read all 140 + chapters of this diary, you will now be able to understand how this condition impacts not only the patient, but critically, those who love them. It would be totally honest to admit that this experience of caregiving was the most difficult challenge of my life. It was only through the process of sharing it with you, my readers, that I could find fulfillment and comfort in the wake of the dementia earthquake which shook up our lives. I am hopeful that the chapters I have written will ease your journey and that of your loved ones.
