I WANT THIS TO BE OVER
I WANT THIS TO BE OVER
I had this reaction after the latest crisis for Beverly. She had a seizure and I received a call from the Nurse on duty. The CNA had observed her having a seizure and went immediately to the Nurse. The seizure had passed and she was not injured as she was in bed. “I want this to be over” came into my mind.
(Beverly had a possible seizure 14 months ago and had been on seizure drugs to prevent future seizures. Recently, the drug dosage had been reduced in the hope of bringing her out of the La La Land she was stuck in following the medical crisis of a blood clot on the lung. That hope of her becoming more functional was realized, but then the seizure happened. Apparently the risk of a seizure had been effectively managed by the appropriate dose of the seizure drug. So she is back on the higher dose of this drug).
Admittedly there were two reasons for my “over” response. The first reason was based on her own statements about the end of life. She did not want to be in the “La La Land” that had dominated her functioning in recent weeks. Nor would she want to have repeated seizures, seizures that would further damage her brain, already deteriorating from the Alzheimer’s process. And those seizures would likely have resulted in serious falls with injuries that might be painful, debilitating, and further limit her functioning. At what point would she “want this to be over?” The question is unanswerable in terms of her current thinking, as we cannot ascertain what her thinking is any more. But there are many of us (me, children, and other friends and relatives) who know what she wanted. And the Advanced Directive is clear about that. Nonetheless I will not yet put those words in her mouth as her consistent current view; indeed by the time this blog was pulled together she was doing better all around,.
The other reason is me! I admit that this idea enters my thinking, though countered by the reaction that I still want her to live. The idea of an end to this can be seen as self-serving, even selfish; but self-protective is how I think of it. That is because this process is stressful and depressing. All is improving, then suddenly deteriorating, then improving only to deteriorate again. Such results happen with other diseases, like cancer and heart disease. And others close to these patients may also have the “over” reaction. But I believe this is different in several ways. She has limited understanding of what is happening and limited ability to communicate with me or anyone. The body wracked by cancer may be lost, but the patient can often still communicate with family and medical professionals how they are experiencing this and how they want to be treated. This may be worse for such a patient who is horrified by the prospect of dying, perhaps through a painful process. Many diseases are as pernicious and untreatable as Alzheimer’s dementia (and other dementias), but the patient has the power to comprehend what is happening, how relief can come, and how it will end. With Beverly, I am left to make decisions on her behalf in her fluctuating but declining state. And the long duration (now around 14 years) of this continuing decline is painful, scary, and wearing for many close to her.
Let it also be said that I have heard this reaction from others dealing with dementia, as the process created more and more difficulty for all concerned. The typical reaction, which I share, is that I hope/pray for him or her to live, but also hope/pray that my loved one will not endure a continuing process of misery, pain and suffering, being confined and restrained and/or mentally no longer present. This is about the patient and also about the family members/friends who feel the suffering of the patient.
This “I wish this was over” reaction is not a simple consistent reaction. It is balanced with “I want to continue.” With a crisis such as the above, the “over” reaction pops up followed by the “continue” reaction. And, of course, there is guilt about the “over” reaction; plus, this may not be a socially acceptable reaction and is not one we would admit to ourselves and others without feeling guilt.
The guilt about the “over” reaction is something to ponder. The guilt is a consequence of some desire to have an ordinary life, one not as dominated by this illness as is now. What would I wish for? To travel, to have meals with, and to have meaningful conversations with someone else, even to have romantic feelings that are reflected back. To wish for those sorts of things creates guilt.
The process of thinking about wanting for this to be over is a reality that many others will face through prolonged deterioration in their loved ones. We should understand that wishing for it to be over is a natural result of what has happened to their lives and to our own. We need to feel that we can take permission to have a range of reactions.