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Dementia, Brain Trauma Force Ethical Questions On Marriage And Love

Dementia

First Posted: 02/08/2012 8:47 pm Updated: 02/08/2012 8:47 pm

By Adelle M. Banks
Religion News Service

(RNS) Philip Weeks fondly remembers the days when his wife of 56 years, June, was a nurse and an artist whose paintings were compared to Rembrandt's.

Her paintings still hang in their home in Lynchburg, Va., but almost everything else has changed for the couple after she was diagnosed with possible Alzheimer's and then an abrupt form of dementia.

In one moment, the retired Charismatic Episcopal bishop said, she would lean over to kiss him. "An hour later, she looked at me and said, 'Who are you?'" he recalled.

When the person you married goes through a dramatic change, what's a spouse to do? As Valentine's Day approaches, clergy, ethicists and brain injury experts agree: There are no easy answers.

When a couple is faced with the sudden or gradual change in the person who now may no longer be able to give flowers or go out to the movies, it often means a new definition of love.

"I made a vow," said an emotional Weeks. "For better or for worse, in sickness and health. She has stood by me in mission work, in the pastorate. Why can't I stand by her now?"

Several recent examples reflect the complexities of love in medically challenging situations:

  • Last summer, religious broadcaster Pat Robertson initially suggested on his "700 Club" program that a man divorce his wife who had Alzheimer's and "start all over again" with dating. Alzheimer's, he said, was "like a walking death." He later said he was "misunderstood."

  • In early January, The Washington Post Magazine ran a story about a woman whose husband suffered a traumatic brain injury after a heart attack. She eventually decided to divorce him but continue caring for him with her second husband.

  • On Friday (Feb. 10), "The Vow" hits movie screens, an adaptation of a rereleased book about a young married couple whose serious car accident left the wife unable to recognize her husband. In fact, she thought she was not married.

"There's always an obligation, I think, to keep faith with your spouse but the shape that that can take, morally speaking, can vary," said Darlene Fozard Weaver, an ethicist at Villanova University in Pennsylvania.

When medical crises interrupt a couple's expectations of wedded bliss, there are all kinds of dynamics to consider: Is the ill spouse now abusive? Can the still-well spouse manage the necessary care?

Although "The Vow" is a romantic drama about trying to get a wife to fall in love with her husband again, Fozard Weaver said it's not far from what real-life marriage -- with health challenges or not -- is all about.

"Keeping faith in a marriage is always this ongoing process of both remembering what brought you together in the first place but also responding to and embracing the person who's here before you now," she said.

The film is based on the real-life story of Kim and Krickitt Carpenter after the couple was involved in the 1993 car accident. Physical therapist Scott Madsen watched the husband move from caretaker to coach to eventually, an again accepted mate.

"As she got better, then the relationship became better as well, more of a normal relationship," said Madsen, who served as best man when the couple renewed their vows in 1996.

Kim Carpenter writes in the book "The Vow" that some people suggested divorce, saying it might even help with medical expenses. That was not his choice.

Greg Ayotte, director of consumer services for the Brain Injury Association of America, said there's a misconception that most spouses of brain-injured patients -- people who have been in a car accident, or had a fall, stroke, or tumor -- head to divorce court. According to two recent studies, the vast majority of married brain-injured patients remain wed.

"In the world of brain injury, the term often used is 'new normal,'" he said. "As you begin to understand the injury, you kind of develop a new normal for your life and your family."

Page Melton Ivie, the subject of The Washington Post story, said faith played a role in her decisions on how to best care for her first husband, Robert Melton.

"In the context of my faith, I am standing by him and with him," she wrote during an online chat after the story was published. "I am fortunate to have found someone who will share this with me."

Others didn't look at it that way.

"Some day she will have to stand before God and explain why she put herself before her vows to God and to Robert," wrote Dennis Babish, a blogger for Prison Fellowship's Breakpoint Blog.

Terri Corcoran, a spokeswoman for the Well Spouse Association, said members on her organization's online forum also were divided. Some called it a "beautiful story" that gave them hope, while others criticized their "have your cake and eat it, too" relationships.

Corcoran's husband, Vince, has a neurodegenerative disorder that leaves him mostly speechless. Corcoran said her conversion to her husband's Catholic faith helped her carry on.

"I've learned to accept the way things are," she said. "I still would give anything to have him normal again even for a day. I just keep saying, 'Lord this is your will. I know you will show me other blessings' and he has."

Weeks, who has self-published a book called "A Long Dark Night: A Caregiver's Journey with Dementia," said he came close to losing his faith, but not his love. Eventually, he said, he stopped doubting God.

"He was giving me a quality of love for her that I did not have before," the bishop said of his wife. "I think I'm a better husband now because I've learned how to deal with this."

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naschkatze
A free man creates himself.
12:00 PM on 02/14/2012
Back in the day we had a friend who suffered a stroke and fell down a flight of stairs in a restaurant. He remained in a vegetative state for the rest of his life. The only way his wife could save herself financially would have been to divorce him, but she wouldn't do it, and in the end she was bankrupted. I hope we have a more merciful system today.
firstamendment3
It's all so ironic.
06:48 PM on 02/13/2012
When you said, "In sickness and in health", what was really going through your mind?
09:46 AM on 02/11/2012
I would like to believe that my husband or I would be there for one another no matter what, but like so many challenges that may happen in life... you don't know how you will handle things, until it happens to you. For those experiencing this, I pray for you to stay strong and for you to be able to have joy in your life without it coming at the expense to others.
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rockysparks
there's no law against being annoying.
08:15 PM on 02/10/2012
My father --- and all five of his siblings developed Alzheimer's before they died. It does not just run, it GALLOPS in our family.

Dad lived just a few years with it before he died of pneumonia. Most days, he was sweet and gentle as he'd always been. He'd repeat his conversations, but we'd work around that. Best of all, he always knew everyone: My sister and me, our children, our grandchildren.

But he couldn't remember who Mother was, despite their marriage of 63 years.

Mother was determined to be his primary caregiver. Whatever time he had left, she'd spend it with him, in their home. But it devastated her to hear him say, "You know, that woman's always so nice to me. But who IS she?" Sometimes he would guess Mother was her older sister, Hazel. Other times, her mother, Ethel. He loved both of them. But he'd never get her name right.

He finally had to be hospitalized. Mother had to admit she could no longer continue to keep him at home. When we visited him the last time, she asked him, as she always did, "Honey, do you know who I am?"

He sat up in his bed, looked her in the eye and said, "Yes I do. You are my dear wife, Venita." And he squeezed her hand. I drove Mother home and watched in the rearview mirror as tears rolled down her smiling face. The next day, he was gone.
04:48 PM on 02/10/2012
There are a lot of issues here that will be debated endlessly in popular and research literature on what a partner/spouse should/should not do when the one they love is diagnosed with some form of dementia (there about 105 forms of dementia). It drives marriages, families, and sibling apart forever. It scares a lot of people because of their own issues with mortality.

My mother was misdiagnosed with dementia due to a UTI infection that included only 3 days of delusional behaviors. She bounced back to live 4 years with full mental capacity, no dementia. But, the damage to our nuclear family will last. She died a month ago, but, because some of my siblings stole her house and forced her into Assisted Living using deception, I cannot personally accept their unspeakable acts of financial and emotional elder abuse.

My sister and I got her out of assisted living and she lived independently for four years, but, again, the damage to her, my sister, and I will be forever a source of pain.

So, when any doctors/PA's diagnose and use the word dementia, be careful out there. People use situations to enrich themselves. So, whether you elect to take care of someone with dementia will really reflect on your character. Also, seeking love and affection outside of a relationship during the waning years is really no one else's business. Makes sense to me.
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nogods
09:29 PM on 02/09/2012
If god was a good guy people wouldn't get Alzheimers.
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08:12 PM on 02/09/2012
The thing is this guy Philip Weeks 'fondly remembers' his wife of 56 years even though she does not remember him.
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John Camp
Husband/Pastor/Scholar
02:45 PM on 02/09/2012
I disagree with the author, there is a simple answer. And Weeks has hit on it, Keep your vows. Period. I say that not just as a pastor who affirms that illness is not a permissible reason for divorce much less infidelity, but also as the husband of a wife who has significant (at times) cognitive impairment from Multiple Sclerosis.

An unsacrificial love is not really love at all, and as we and our loved ones experience the deleterious effects of disease and aging, if we love them caring for them although difficult, demanding and at times down right confusing will be a joyful expression of our love.

And for those who have saving faith, our hope is eternal and we have the assurance that suffering will pass away as a vapor just like this temporal life. That is why we are able to count it all joy, even if we must suffer for a little while, no matter what befalls us (James 1:2).
09:26 AM on 02/10/2012
John, my prayers for you and your wife. Thank you for your words and may God continue to uphold you and shelter you both in His mercy. I also pray that the body of Christ will be there when you need them.
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naschkatze
A free man creates himself.
12:11 PM on 02/14/2012
Your life as a human being is being crowned by your faithfulness to your wife. I really love what you say about "An unsacrificial love is not really love at all." And thank you for quoting from the Letter of James. Christianity has too often sidelined this letter which is probably the only writing in the NT to have come out of the Church in Jerusalem, that is, from the people who really knew Jesus in the flesh.
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01:34 PM on 02/09/2012
I feel certain his wife's paintings were not 'compared' to Rembrandt. It is sometimes sad how we mis-remember our loved one's as they wither away, giving them credits they never earned.

Making them feel important to us by lying to ourselves, and all who read this article.
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WoolyBumblebee
Creator of TruthAndOblivion.com
09:06 AM on 02/09/2012
First, why does this article imply that only those with "faith" can overcome these issues in a relationship? It's not god helping you, it's one's own personal decision and strength. If one chooses to stay and support their partner, then that is great. If they choose that it is too hard and leave, then that is great too. Why do we look upon the ill one as the one with all the "rights" to stay within a relationship, while forgetting how hard it is for the other partner who has to bear the brunt of the care and constant stress? We can pretend it is a lovely and honorable thing to do, to sacrifice one's own feelings, life, and happiness to care for someone who is ill like this. But it's not. It's a choice. And what ever choice someone makes in these situations is personal and should not be judged. Throwing religion into the mix and feeling like one is "obligated" to care for them is wrong. Forcing someone to care for another does not imply love. It means they will care for the other person regardless of how they feel. It's no one's place to say what is right or not for the individuals involved.
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iLdoRight
Encouraging The Rightest Rightness
09:15 AM on 02/09/2012
How did you acquire the right to say what is right?
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WoolyBumblebee
Creator of TruthAndOblivion.com
09:38 AM on 02/09/2012
Did I say what was right? NO! I said it was a personal choice and we are not here to judge. Try reading properly.
08:03 AM on 02/09/2012
Totally agree with jrkeiffer.... Sad for the ones who have dementia or brain trauma, but more so for their loved ones or spouses. They are automatically thrown into an unknown world of loneliness and martyrdom. But the worst part is seeing the person you love deteriorate right in front of your eyes.... And I think most of the married never see themselves as abandoning someone they love, but live it long enough and it would be natural to NEED some reciprocation on the same level. I can't really say I can be like Page Melton Ivie and leave the marriage because my husband is sick, but I cannot say that I do not admire her for taking care of him with her second husband. And i think in a way she kept her vow, " in sickness and in health".
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09:07 AM on 02/09/2012
Consider that the new husband might have assets that help provide better care for the first husband. This woman is a better care giver because she has mental, emotional and financial support. I think she and her new husband are remarkably compassionate. Everyone is better off because they ignored archaic shouldisms in favor of something that actually works. I'm at a loss as to why anyone would be critical or judgmental. It's not like the opinionated are going to show up on our doorsteps to help us out.
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09:43 PM on 02/08/2012
If we had an otherwise good relationship with our spouse most of us wouldn't consider abandoning them. Caring for them does not mean we have to martyr ourselves though to a life of loneliness and utter sacrifice. The healthy spouse is just as important and valid of a human as the ill one. Whatever works for both of them should be no one else's concern...despite the neb noses who think their opinion belongs in another's business.
07:35 PM on 02/08/2012
The article raises significant isues that are being lived by many. My research into aging and baby boomers indicated that the development of new relationships while a spouse is "alive" with dementia or Alzheimer's is not that isolated. We actually developed a ritual document that deals with this from sources. See new book "Seekers of Meaning: Baby Boomers, Judaism and the Pursuit of Healthy Aging". (URJPress. NYC. 2011)