Divorce after the diagnosis of Alzheimer’s disease

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 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.

Dominic A. Carone is a neuropsychologist who blogs at MedFriendly.com.

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  • http://www.facebook.com/people/Stephen-Reginald/1404845830 Stephen Reginald

    Divorce is a legal alternative to many marital situations, whether we like it or not. The Doctor here is making a judgment and therefore is treading in waters he said he didn’t want to wade. He’s making a judgment based on his beliefs, which is perfectly fine. However, his choices and beliefs aren’t the law, nor are they held by everyone.

    • Marvin H. Berman PhD

      An alternative option for caregivers in these situations is to help their loved ones get treatment that could in some cases reverse their dementia symptoms and at least significantly improve their cognitive and emotional responses for a while. The challenge of getting people to participate in clinical trials of new treatments for dementia would be greatly improved if people could satisfy their narcissism and relieve their guilt by actually doing something that could directly help the person to get better or at least help those trying to find effective treatments to help others in the future. Please check out http://www.clinicaltrials.gov and specifically, http://www.quietmindfdn.org/clinicaltrial

  • Anonymous

    Unfortunately, this advise is given more often than we know.  It is sad that a “man of God” is giving that type of advise as our marriage vows do state, “In sickness and in health”.  These are times that we count on the people we know and love to be with us and for us.  I am not passing judgement, but have compassion for the spouse that cares for a person with any disability as it is very hard.  In those times, we can seek the support of our family, friends and community resources to give our spouse the best life possible while they are here.

  • http://pulse.yahoo.com/_7PZS3Q7BGUQMKG5UO5XWVKQ6WU LL

    I’ve worked in the AD field for decades.  I understand the issues.  You touch on many important things in the article.  One thing hits me about this “gentleman”.  Yes, she is different; yes, she may not recognize him, she may even be afraid of him.  As such she cannot “perform” as a wife – whether it’s making his meals, co-entertaining friends/co-workers, or sex.  His needs are not being met, so he is looking elsewhere.  Maybe divorce would be better for her, as he is putting his own needs before the marriage.  Being a caregiver myself, it is my unwavering love for my family member that gets me through the sometimes crushing weight of caregiving for someone who is no longer the same person.  Without that kind of love, I don’t think that man in the story is up to the task.

  • http://twitter.com/DeniseMCampbell Denise Campbell

    quite frankly we are all making a judgement based on our own belief systems.  Why? How does making any judgement help? Although I don’t understand why someone could “abandon” someone they once loved… I do know that forcing them or making them feel guilty will not help the patient.  Once we stop the judgement maybe we can find a real solution that benefits the patient! After all, isn’t that why we practice medicine!

  • http://pulse.yahoo.com/_ZV4UAC2N6ASIC6VLLIUPN7TKPQ Keith Taylor

    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

  • http://www.facebook.com/shehla.naseem Shehla Naseem

    Its excruiciating for the family but thats what families are supposed to do..to stick together in sickness and in health. perhaps the person should have been asked the same question in reverse..what if he was the sufferer….But people do act abnormal or selfish if I may say…I have seen people divorce their wives even if she has subfertility.

  • http://www.facebook.com/profile.php?id=602077101 Chris Comfort

    I would disagree that Pat said it was better or even okay to divorce a person with Alzheimer’s – he said divorce was better than adultery.  And he also repeatedly said that he didn’t have the answer, that this was a difficult question, but said that in no way was the “healthy” spouse’s responsibility to care for the “unhealthy” spouse negated by the disease. 

    The “healthy” spouse did not up and decide to leave the “unhealthy” spouse at the first sign of Alzheimer’s, he had been caring for his wife and had grown very bitter and angry.  Perhaps the real issue here is a better support system for those who are the caregivers.

    You said: “Although some facilities provide excellent custodial care, no one will
    look after the patient better than a concerned, motivated, and loving
    family member.”  What happens when that family member feels they are shouldering the burden alone and has no support themselves?  Are they still able to give the best care?

    I would never disagree that Pat Robertson has made many inflammatory and wild statements (I even think he’s a bit on the crazy side), but I actually don’t think that this is one.  He admits it’s a difficult position, and that he didn’t has the absolute right/wrong answer.

  • http://ketchasketch.wordpress.com/ Mark Ketchum

    I heard what Pat Robinson said directly and it is not represented here. He was given a choice… adultery or divorce… and he sided with divorce. That being said… no man should ever abandon his wife or vice versa for any reason other than chronic adultery or abuse. Dementia is a “blessing” that God gives us to show the unconditional love that He showed us. Although it is a blessing in disguise, it is a blessing.

  • Anonymous

    A great example of what happens when people fall away from the mother church! Poor Pat.

    BTW – even to the lesser question: which is best, adultery or divorce – he answer wrongly. There is no such thing as divorce in this case (because the marriage was valid and no impediment existed to file for annulment), and therefore not only would divorce represent abandonment, it would also represent adultery! The irony!

    Let us all therefore pray for Christian unity under the Church Christ instituted through Peter, and that Pat and his ilk turn away from their heresy!

  • http://pulse.yahoo.com/_DAU7RGDWKLQ33YFTJBHOPZB36M Linda Wofford

    I have had to deal with Huntington’s Disease in many many of my relatives.  I chose not to marry.  During my child bearing years there was no genetic testing at the time.  I also thought if I did marry, my husband would probably not be there should I manifast the disease. 

    I had a physician curtly tell my mother, “Well, you know you can just walk away.”  She was totally crushed. 

    How is this any different than abortion? 

  • Anonymous

    I was on the opposite end of this and was abandoned as well as cut all ties with by my husband who then filed for divorce when I found out about his illness.  He used his illness and the laws in Michigan for spousal support that is financially breaking me.  Where is the fairness and compassion for me in this situation?

  • http://www.facebook.com/people/Natalie-A-Sera/743004321 Natalie A. Sera

    I hate to sound cynical, but the so-called “pro-life” people like Pat Robertson, are actually only pro-fetal life. Once the baby is born, grows up, grows old, and gets ill, they could care less. And we are electing THESE people to govern us?
    As we baby boomers approach old-age, many of us will not HAVE families to care for us, and although our government SHOULD have seen it coming for the last 50 or more years, they have done nothing to prepare for our old age. Our doctors and our health-care system are our last hope — can we at least have a peaceful old age in a world that has NEVER been kind to us?

  • http://www.facebook.com/philip.w.chao Philip W Chao

    Does Pat Robertson care about the infant mortality rate?  By his actions I think not.
    This advice is awful and I hope that one day he hears a final authority tell him so.
    When someone gets Alzheimers it is a long and drawn out process.  When you agree to get married you agree to care for each other in sickness and in health.  Both my parents were true to that vow and although they had mild dementia – they both did OK – caring for each other.   If my partner were to get Alzheimers I would care for him.
    till I couldn’t anymore