Saturday, September 17, 2011

Abandoning Alzheimer's Patients: My response to Pat Robertson

I was tempted to avoid venturing into this topic, only because I strive to keep my website and blog away from politics and religion. In that light, I am going to stay away from the politics and religion of this topic and just stick with the main theme of the story and respond based on my own experiences, which includes assessing patients who are known to have or are suspected of having Alzheimer’s disease and/or other serious medical diagnoses.

The context of this blog entry has to do with a comment that Pat Robertson made on his show, The 700 Club.

A viewer asked about his friend, who began seeing another woman after his wife developed Alzheimer's Disease: "He says that he should be allowed to see other people, because his wife as he knows her is gone. I’m not sure what to tell him. Please help." 

The fact that the question was asked in the first place (especially to a religious leader) indicated that the caller felt guilty and that he is doing something wrong.

Robertson acknowledged that it was a difficult situation but then stated that "I know it sounds cruel, but if he’s going to do something, he should divorce her and start all over again, but to make sure she has custodial care and somebody looking after her.” 

When someone asked about how this can be reconciled with marital vows, Robertson rationalized his response by saying that Alzheimer’s Disease is “a kind of death.”

The most difficult aspect of my job by far is having to tell a patients and their family members that the results of the evaluation indicate the presence of Alzheimer’s disease. It is extremely difficult because there is no cure, the disease course is slow and progressive, and it involves profound memory loss. The disease will take its toll on the patient, spouse, friends, and family. However, these patients need strong emotional and physical support from these individuals because these are the people who love and care about them the most. The reference to “custodial care” is a fancy way of saying that someone else will take the primary responsibility of caring for the patient, typically in a nursing home.

To be sure, not every spouse or family member can care for a patient with significant medical needs by themselves. It is indeed a difficult job, physically, cognitively, and emotionally. Many people need help taking on this care-taking role but at a certain point, the demands can become too great and the best decision for the patient and the spouse is for the patient to be cared for in a quality nursing home. However, this does not mean that the spouse divorces the patient and abandons them. Over my years of working in various inpatient services, I have seen family members who are regularly present by their loved one to provide the support they need. In any medical facility, it makes a world of difference having family and friends present who can advocate on your behalf to make sure the best possible care is received. In some medical facilities, when staff see that the patient has been abandoned by the family, it can unfortunately need to a detachment in treating the needs of the patient by some, most, or all of the staff.

Another problem with Robertson’s comment is that is can easily be applied to patients who are in the end stages of other terminal diseases, such as cancer, Lou Gehrig’s disease, or Huntington’s disease. People with terminal medical conditions are nowhere near the persons they once were when the physical ravages of the condition or disease have set in. Beyond physical impairments, significant changes in thinking skills, emotional functioning, and behavioral functioning often co-occur. Would Robertson suggest abandoning these patients too?

Anyone who has personal and/or professional experience that involves the impending death of a family member, friend, or patient, can attest to the importance of family support. Whether it is talking to provide cognitive stimulation and emotional support, putting on the radio or television, bringing in a favorite snack, making the bed more comfortable, helping with grooming and hygiene, making sure the proper medications are being given, or making sure the doctor is aware of new medical problems, these are just a few of the things that a spouse or family member can do that benefit the patient. Although some facilities provide excellent custodial care, no one will look after the patient better than a concerned, motivated, and loving family member.

Robertson’s comments can probably also be applied to patients who do not have a terminal disease but instead have a condition or disease that causes severe impairments in physical, cognitive, emotional, and/or behavioral functioning. Some examples are severe traumatic brain injury, stroke, and Parkinson’s disease. Would Robertson see the severe impairments be seen as “a kind of death” and if so, would be advocate abandoning these people?

As someone who witnessed my grandmother suffer from the debilitating effects of a stroke, I can attest that she was a completely different person. She had transformed from a the stereotypical short, pleasantly plump Italian grandmother who loved to talk with you, to an emaciated and aphasic (speech impaired) woman who seemed to have aged by 20 years. She could no longer dance to Perry Como songs at Christmas time or prepare baseball-sized meatballs in the kitchen as she was now bedridden and paralyzed on one side of her body. Gone were the nice welcoming kisses, hugs, and cute little phrases as they were replaced by confusion, bewilderment, and occasional obscenity use.

Although some may see this as “a kind of death” my father frequently took us to see her when I was a child because it was the right thing to do, even though it was difficult. When we were there, all of the support mentioned above was provided. But since Robertson focused on spouses, it is important to point out that her husband remained at her side for years until she passed away, despite only marrying her a few months before the stroke. She usually did not remember him and often referred to him by other names. Nevertheless, the thought of abandoning her and withdrawing support would simple never have occurred to him. Each day, this nice little old man, braved the New York City subway system and city crowds, despite all of his own medical problems – just so he could be there for his lady.

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