Jezebel
Readers, it's been a trying few blogdays. Mike Cherico, Eliot Spitzer, Ben Karlin...if anyone needs douchetoxification, it is we. Good thing there are still at least, like, at least four decent males in this world, one of whom was profiled in Sunday's Washington Post Magazine, so gather around and take heart in the story of Dave Kendall. Many years ago, Dave married a woman with a rare genetic disorder. For the first two decades of married life she was normal, when in her late forties she began slipping irrevocably into advanced vegetablehood. He now feeds her, moves her everywhere, and takes her to the bathroom, keeping close watch on her shits. Her mind is lodged deeply in dementia, but he keeps it as healthy and active as he can, quizzing her on basic arithmetic and forcing her to play Bingo with him. The better he treats her, the longer she lives. "On a computer bulletin board recently, Dave heard of a woman who lived 30 years with Huntington's," the story writes. "By the end, she weighed 44 pounds."
Perhaps unsurprisingly, Dave is a fan of Job. He has trained himself to feel thankful for truly pathetic things, such as: "She's been more thankful about more things than I would have been. Sometimes I'll be curt with her, and she'll thank me. How bad is that on your conscience?"
It is an illness that can have a very long trajectory: 10 to 20 years is the estimated life-span after diagnosis, but there is no way to know. The better care Dave takes of Diana — and he takes very good care of her — the longer she will live. The longer she lives, the longer he has to live like this: Waking in the night to take Diana to the toilet or settle her after an anxiety episode. Getting up early to prepare her medications and make her breakfast, then rushing home from work to fix them both dinner. Feeding Diana, cleaning Diana, hoisting Diana up and down the stairs. Never taking vacations. Going to weddings and other events by himself. Sleeping alone. And sleeping little.In an online chat held Monday, Dave recommended that all married couples talk early and often about "contingencies" and buy lots of insurance. The author also recommends the Well Spouse Association chat rooms for moral support, and if you want to find another ailing person's spouse to have an affair with not that anyone's recommending that per se. But seriously, I have been obsessed with this question from the time I read Jane Eyre about twenty years ago until the Terry Schaivo thing totally desensitized me to it: what if you marry someone who decides not to commit suicide in the face of degenerative disease?
The Vow [Washington Post Magazine]
Online Chat Transcript with Dave Kendall [Washington Post]
Comments
If you do the crime, you do the time.
Meaghan2k's philosophy on marriage.
Wow.
That picture just stole mah HEART.
Thank you for the wonderful story. This made my day.
I this made me sob. Mr Rhody and I had a conversation last night about how we both wish to go first (hopefully at an old age) but we have never discussed what we would do if one of us ended up like this. It is a little morbid, but definitely something that should be broached.
Still crying. Can't imagine seeing my spouse in that state. Bless this man.
That's sweet, Meaghan. Christ help you if you ever get in that position.
I hope I have the courage to off myself if I ever get a diagnosis like that. I'm not saying that to be flip. I really do.
That said, I hope I would have the courage to take care of my husband if he ever got into a situation like that.
This story broke my heart. Especially from the wife's perspective, how she said "thank you" compulsively. She seemed to be aware and afraid of being a "burden" to her husband.
He is really amazing. I don't know if I would be able to do that for my (currently non-existent) spouse.
I just want to cry. Isn't this the point of families? Who else is supposed to do it? It's hard when we are more mobile and live far from our families of origin or if those people are not caretakers. It needn't be so rough on him. The government or her insurance should provide caretakers, nurses, and relief workers. Then it wouldn't be so all consuming and terrifying to be in a family, to be responsible for each other, to recognize we are interdependent.
i just recently had this conversation with the boy. at a bar. while hammered. i don't even remember how it turned out, really. but a male friend of mine proposed a sliding scale relative to how long the significant other is expected to live: less than a year, get married. make them happy. more than a year: run for your life. i don't know if he was serious or not.
That, people, is what love is.
As with most everything, you can't imagine what you'd do until you are faced with it. Great advice about having the early discussion and buying long-term care insurance, though.
@meaghan2k: Um, what?
The vows state "for better or for worse." Don't say it unless you mean it.
But if someone couldn't handle this kind of situation, I don't think I could judge them too harshly.
God bless Dave Kendall. I don't think I could do what he's doing.
I've been fixated for the past few years on an old in my neighborhood who is doing this for his wife: she's completely non-communicative, and he's there every day, pushing her out for silent walks in the sun, wiping her mouth, taking care of what's left of her. I saw him walking alone the other day and was crushed.
Wow. Needed that after all the Eliot Spitzer crap.
Seriously though, 44 pounds ? That's terrible.
This makes my poor sad heart happier today.
I can't say for sure because I have never been in this extremely difficult position, but I vowed "in sickness and in health," and I hope that I could live up to it. If worst came to worst, I would do my best to be in it for the long haul.
I don't think I could handle doing that. I am not a patient person, and stories like this make me think that I may not even be a very good person. *sigh*
This is such a nightmare scenario for me... I'd much much much rather be dead than disabled with my partner's life taken over by caring for me. I hope I have the courage to follow through on that if I ever get such a diagnosis.
@Rhody: Totally off topic, but I just melted a little when you referred to your husband as Mr. Rhody. Dunno why, it's just cute :o)
@NewsBunny: I'm not serious. But it is a horrible position to be in. She's barely living, and he's definitely not living. It's not an easy thing to discuss. I often joke that the minute I can't wipe my own ass I want someone to put me out of my misery. But what if someone loves me to much to do that? How is living in such a state even living?
If a woman takes care of her disabled spouse, she's just doing what's expected. If a man does it, he's a fucking hero.
It is incredibly heroic and sad nomatter who you are. I can't imagine in a million years leaving my husband if anything like this were to happen. Would I eventually probably have affairs? Hell yes. Not just for the sex, but the whole romantic relationship would probably be replaced by more of a loving caretaker situation. I would just make sure I was very, very discreet and never hurt him in any way. And I would think he would eventually do the same if it were reversed (I'm talking 10+ years of serious vegitude, not like a broken leg or something).
@Rhody: We had that conversation a few months ago when my husband was able to put me on his life insurance. He got so upset. The possibility of my dying is hard enough, much less slowly breaking down.
Talk about it, agree that the non-vegetable gets to have sex with other people.
Can we has fuzzy kittehz nao plz?
@katekate: She's just saying that if you marry someone, you're in it for the long haul.
My granddad took care of my grandma for years when she had Alzheimer's. I don't think he remembers her as anything other than the person she was before she got sick, and now all he wants to do is die so he can be with her. Sometimes marriage is the real deal.
@rsr26:
Yeah, you never know until it comes round and bites you...some people just freeze and aren't good carer's.
This guy is obv a brilliant carer in general..
I'm all choked up.
I tell my husband, quoting Winnie the Pooh, that if he lives to be 100, I want to live to be 100 minus one day, so that I never have to live without him.
I respect men and women who stay with their partner through something like this. So many people would just leave and not even care what becomes of the other person. I agree with him that couples should discuss what to do if something like this happens.
I don't know, dude. What if it's just not what you signed up for? I know, you made a choice to get married, but what if it's just your longtime partner and you don't have the emotional, mental or physical capacity to take care of them? There's no backing out of there without devastatingly hard feelings.
@katekate: It's sarcastic.
If you commit the "crime" (marriage)
You do the "time" (flying airplanes of food into your loved ones mouth)
I know what it's like to take care of someone who could no longer take care of themselves, and it's a shitty fucking situation.
I'm so hormonal today. This is making me bawl.
@myrtlebeachbum: My grandpa had Alzheimers too. Hugs...
My mom does this for my gramma every day.
I don't know how she does it, but she does.
@Lady Skittlehattington's Publicist: Thanks LSP. 'preciate it.
Happy Tuesday, Jezebelles and Jezebeaus!
That is so sweet. I knew a woman with ALS whose husband was obsessed with working overtime and too cheap to see that she was cared for. He would leave her sitting in her chair with a diaper and a 2-liter of Pepsi for 12 hours at a time.
This dude is the antidote to smarmy-edgy english teaching douchebags at Glamour mag.
Oh holy hell. I could not imagine. Marriage is so full of ups and downs as it is. Throw this in the mix? Jeebus.
My husband and I have both agreed that we would want the other person to pull the plug, because it's what each of us would want for ourselves. Still, this is no decision anyone should have to make.
@meaghan2k: Ah. Sometimes 'not serious' doesn't translate well when all you've got is typed words.
I take back the harshness.
I really did not need this right now. *Trying not to cry in the middle of a Starbucks*
God bless this guy for doing what he does. But if I were to ever have a degenerative brain disease and it was clear that I was completley out of it, I would really like my future spouse to just drop me off at Disney World and get on with her life.
@Schez: I don't know if that's humanly possible, is it?
My stepmother had a stroke in her 40s. My dad has taken care of her ever since, even though they were only dating at the time. She is in a wheelchair and, while he has full mental capacity, she cannot communicate her thoughts. Her family has pretty much just let my dad go at it alone.
I think this is one of those situations where it is hard to make a judgment call unless you are actually dealing with it, though as it stands I would do it for my bf, just as I would for my mother, my sisters, or my father, because I love them. And I hope they would do the same for me.
@AlmostZooey: Have a muffin. You know you want one...
Aw. This reminds me of my grandpa, who took care of my grandma at home until a month before she died. She had Parkinson's. When he finally had to take her to a home, they said that she was the most well-taken care of patient they'd every had.
He did have a lady come in part time to help cook and clean and help him with things he couldn't do by himself...but it was mostly him.
If you care enough about someone to get married, you should care enough to see to it that they are cared for if anything happens (accident, illness, etc).
i'd love to think my guy would do this for me, but honestly he can't even remember to feed himself somedays.
It's nice to see that some love can be unconditional and not everyone desires a prostitute.
"What if you marry someone who decides not to commit suicide in the face of degenerative disease?"
Now let's change it around:
<What if YOUR MOM decides not to commit suicide in the face of degenerative disease?
What if YOUR BROTHER decides not to commit suicide in the face of degenerative disease?