Seven Years In A Persistent Vegetative State

Miscellaneous and Personal Stuff I Must Share
1

I have waited for a long time to post about this, but very recently something happened which brought all of my thoughts and emotions back to the surface. The situation is such that I don’t have anyone here to unload on, and it’s only now that the climate of the SDMB has been such that I feel that I may share without starting a war.

A bit of back story, when I moved to Alaska in 1989 it was to a tiny Native village. I spent five years there, during which I became well acquainted with Alutiq culture, as well as village culture. Thirty years ago the village was, for all intent and purpose, similar to a third world county. No running water, no electricity except for the few who spent fishing money to buy a generator, and their subsistence lifestyle was amended to add such food staples as Spam, pasta, Veg-All and pilot bread. Very few residents finished high school, alcoholism with all of it’s accompanying horrors was rampant, and girls most frequently had their first baby no later than 15, generally much earlier. When I left the village to move into Kodiak I had acquired a Native husband, and we had two children.

My husband is a good man who was raised in a very dysfunctional family. Over the years he has made some very fundamental changes, the most important being that he is now 14 years sober. The rest of his family are still active alcoholics. Like most Native families, his is a large family, and I am resented for being the white woman who “lured” him out of the village, “made” him stop partying, and I do not allow drunkenness in my home. I also put a stop to his family always showing up with their hands out whenever he has a fishing settlement. I am not popular with my in laws, but I do love them. My heart aches for them, but their life choices are not something I can do anything about.

Moving on. I found the SDMB in 2001, and with my husband gone fishing almost all of the time then, it was a wonderful place to have social interaction while still being at home tending to the kids and the household. In October of that year my husband was out in the Bering Sea getting ready for the red crab fishery*. They hadn’t left the port of Dutch Harbor yet when I received a phone call from one of my sisters-in-law, telling me that the eldest sister, Babe**, was being medavaced to Anchorage. She had been on a drinking binge for a little over two weeks, she and her boyfriend had run out of money to buy alcohol and so they were going cold turkey into (temporary) sobriety. They had gone to bed, and her boyfriend woke in the night to find Babe with no pulse or respiration. (It turns out that she had several grand mal seizures.) It took the EMT’s 20 minutes to respond, and they began resuscitation efforts.

After working on Babe for over half an hour she was taken to the hospital where her heart and respiration continued to start and stop, and finally a medavac was called and she was taken to Anchorage. She was put on a respirator, her heart failed many more times, but dammit, they kept her “alive”. I spoke with my mother-in-law several times, as she didn’t understand what the doctors were telling her. Eventually Babe was brought back to Kodiak, on a respirator, where her heart failed again several more times.

(Why did they do this? Why did they continue with resuscitation efforts when she was so obviously gone? Please God, don’t ever let this happen to me, and yes, I now have a Living Will.)

At this point in time the Terry Schiavo case was all over the news, and I didn’t feel that I could bring up the subject here without all hell breaking loose. I did read everything I could on her case, and about the differences between a coma and a persistent vegetative state, and when the family meeting came at the hospital I was ready with some questions.

The entire family was there, and as I have said there isn’t a whole lot of love for me, which made my situation difficult. The doctor was completely talking over the heads of my in laws and Babe’s boyfriend, leaving them with the false impression that Babe would recover. I finally asked the doctor if she would answer some pointed questions for me. She agreed, and I asked if Babe was in a coma or a PVS. I asked if there was any neurological activity. I asked if there was any chance that Babe was ever going to “wake up”, get out of bed and resume her life. The doctor answered that she was in a PVS, there was virtually no neurological activity, and no, Babe was never going to resume her old life. Or any kind of life beyond the respirator and the feeding tube, infections, heart failure, atrophy, and the slow failure of her internal organs. Babe has indeed experienced all of these, and yet, with all of the information my in laws continue to hold on to hope that she hears them, looks at them, tries to speak to them. It is heart wrenching to go to the hospital (and I rarely do) and watch my in laws, and even my husband, hold her hand and beg her to wake up, while I speak quietly to the nurse about her condition.

Babe has three children, the youngest of whom is very close to my husband, kids and I. He’s a good kid who has been dealt a raw deal, but he is in high school and living with his grandma on his father’s side here in town. He was over night before last, and out of the blue he held out a photo album and said “Here Auntie, look”. In it were photos of his sister and her new baby with Babe propped up in her bed and the baby lying on her chest. It was, to me, a ghastly photo, as well as a heartbreaking one.

I feel so helpless and hopeless about the entire situation. God help me, I just want to scream at the family to let her go, and give her a proper burial. When I go there, or even think of her, my feelings are that they are keeping a corpse warm in that bed in the hospital, with machines keeping her breathing and a tube in her abdomen maintaining the nutrients to keep the body hovering on the brink. Her family is in denial, and they are suffering, but they keep holding out hope, and keeping her three children hoping that their mother is going to come back to them some day.

Perhaps the anniversary of Terry Schiavo’s release from her irreparably broken life has brought all of my feelings to the surface. I am not writing this expecting any miracle advice, or even sympathy, really. I just needed to get it out of my head, and as I stated before, there is no one here I may speak objectively about this. If you read through this too long post, thank you.
*This was the only time I have ever lied to my husband, but I could not, in good consciousness, let him go out in the Bering Sea with this information, the job is too dangerous as it is. I did get a hold of him once they were back in Dutch to let him know what had happened before someone else could tell him.
**Babe is a family nickname, not her real name.

2

I wish I had some earth-shatteringly wise advice to give you, but of course I don’t. But I can tell you that I read every word, and I hear you. I’m sorry your in-laws are so deep in denial and making this so difficult for everyone. They sound like people without a lot of real hope in their lives in general, and they’re grabbing on to what small hope they can.

Seems like it’d be a lot more useful to spend all that money on infrastructure for the town, instead of medical care for a vegetable, though.

3

What a heartbreaking situation for your in-laws, kai and for you, too. It is indeed troubling that they resuscitated Babe so many times, but often these extraordinary efforts are expected, and thus we have situations like this one.

I will offer prayers for you and your family, praying that we can understand and trust that God has a plan (though we may not see it), and for peace for the family and for Babe too. God bless you kai, it sounds like it’s been rough for everyone.

4

Oh my, Kaiwik; you are certainly in my prayers, as are your in-laws and hubby and family. I’m sorry that the in-laws family is in such deep denial, but to be honest, there isn’t much that you can do about that. I do understand the pain that it is causing you. I wouldn’t want to be maintained that way either, and I think you’re absolutely right, it’s a shame that the family is hanging onto this little bit of “hope” that a miracle will happen. That would have been like me wishing that my mother’s cancerous tumor would miraculously be gone. But of course it wasn’t.

{{{{{{{Kaiwik}}}}}}}

5

Thanks for you kind words WhyNot, Ellen Cherry and herbs. It is a rough situation, and I bite my tongue a lot. As the song says, “Life ain’t always beautiful, but it’s a beautiful life”. I try to hold that thought daily in my heart. Prayers are gratefully accepted, thank you very much.

I ought to clarify that as far as life in the village goes, HUD built houses in 1978, grants covered running water and a village wide generator. While I was living there a dam was built on Humpy Creek and most of the electricity is now supplied by hydroelectricity. There is still no store, except in the summer when the cannery is running, and the village is damp, which means one cannot buy or sell alcohol, but one may bring it in from town. The village is accessible by small plane or boat only. It’s a beautiful place, except for the alcohol, domestic/child abuse and other acts of violence.

Oh, and Medicaid is paying all the bills for keeping Babe above ground. :rolleyes:

6

I don’t have any advice or wisdom to offer either. Just hugs. (((((Kai)))))

7

What they said.

(((((Kai)))))

8

kaiwik, I know you said you weren’t looking for sympathy but you and your in-laws have mine anyway. That does sound like a truly ghastly situation. It’s literally unfathomable for me to try to see your in-laws’ position with Babe.

I’ll be honest, my respect for you has skyrocketed, too. There’s no way in Hell, no matter how much I loved my spouse, that I’d be able to visit someone in a PVS. Especially not the people I was supporting were talking to her while they visited. I’d want to rage, or weep, or scream. Or start some truly sinister sabotage.

Sometimes all you can do is keep on keeping on.

Here’s some more internet hugs, at least.

9

Oh, kaiwik, what a heartbreaking situation. :frowning:

10

I don’t think there is anything in the above message that is either Mundane or Pointless.

Thoughts and prayers.

11

Maybe the biggest shock I experienced as a new Alaska resident was the sheer magnitude of alcohol’s grip on the native population. From seeing the courthouse lawn covered with the bodies of those sleeping off their hangovers to trying to defuse violent tempers brought to the boiling point by drink, it was always both disturbing and depressing to witness. I have no words of advice as all my efforts to generate a working relationship with alcoholic natives fell short. I am though very moved by your words and plight and admire more than you’ll ever know your temperament and patience. A moving read and my heart goes out to you.

12

I sympathize with you and the rest of the family for having gone through this heart-wrenching ordeal.
However…honestly I don’t think it is your place to tell the rest of the family what to do or to judge the way they’re handling this. You have your own values and ideas about the best way to deal with this and they have theirs (perhaps in some part due to the different cultures you were raised in). It doesn’t mean one of you is right and the other wrong.
I’m in the medical field myself, so I am definitely aware that meaningful recovery from a state like this is very, very unlikely - but then again, that’s an assessment based on current technology and understanding of their condition. Recovery from brain injuries is not a well-understood field of medicine, and nobody really knows what future experimental treatments may offer. So, in that sense, I don’t think it’s wrong for the families of these patients to hold out hope for that remote chance of a recovery.
I’ve dealt with hopelessly ill patients with no realistic chance of recovery, and I’ve seen that people have different ways of coping. For some people, like you, there is peace in letting go and accepting death. For others, losing all hope and accepting the inevitable causes more suffering; they need to feel like they’re still fighting on to the very end no matter how grim the prognosis is or how much suffering the treatments cause. It’s just different approaches for different people.

It sounds like you were not particularly close to Babe before this happened. Try to understand that for someone who knew and loved her as she used to be, it probably is by no means easy to just let go, and this path may very well be the least horrible of the horrible options they have at this point. Babe isn’t capable of suffering in the state she’s in, so really the only people whose suffering is an issue at this point is her family’s.

13

I think you’ve chosen well on the path to take. Stay informed on the situation, but don’t take on the family. They will not change, and your saying anything will just hurt your relation to these people. Writing here is the best thing to do, because confiding to anybody in the village has a good chance of spreading by gossip. Hang in there.

14

lavenderviolet I appreciate your take on things, allow me to inject a few more details. Babe and I were friends, I was the first person she came to, crying, when the testing showed her eldest daughter to be severely FAS. All three of her children are affected to some degree, but the eldest is the worst off. There were behaviors which I just could not abide, such as her habit of taking the eldest (at the time she was 10) with her to sit on the sidewalk outside of the bar while Babe was inside getting drunk. That is just one example.

Yes, the culture I was raised in was different, but I come from a long line of alcoholics, and the incidents were no different in Seattle than they were in Larsen Bay. I won’t bore you with the details of my abuse as a child, or that of my brothers or my mother, but it does form the bias I have against irresponsible drinking.

Perhaps I didn’t make plain that I do not begrudge the family the hope that Babe will someday be healed and whole. Just a few years prior to this the youngest sister was lost, having decided to take a bath after becoming extremely inebriated. Her boyfriend had gone to bed, and when he woke he found her long dead in the bathtub, where she had passed out and drowned. I have four children of my own, and siblings who are in horrible circumstances, and a stepsister who died 10 years ago. I cannot comprehend fully what hell losing a child must be, but I care deeply for my in laws, even if we don’t get on very well, and Babe is my husband’s sister. I care, I care too much some times, and that is when the pain and frustration boil over. My grandfather was in a pvs for a week before the family decided to let him go. Seven years is a long time to watch this woman deteriorate, she is unrecognizable as the person she once was.

As a medical professional, are you able to tell me that when she grinds her gums (she had her teeth pulled years ago due to poor dental hygiene as a child) until they are raw and become infected, that when she has UTI’s time after time, that the atrophy in her arms, hands, feet and legs, the bedsores, etc. cause her no pain, no suffering? If you can, you will greatly ease my mind.

The pain her family and friends are suffering is terrible. Life has been irreparably changed for everyone who has a connection to her. At what point does hope die, and the inevitable becomes a reality? For the record, her mother has guardianship over her, and makes all of the decisions over what happens to her. As a mother, I cannot wrap my mind around telling the doctors to remove the feeding tube, and my heart breaks for my mother-in-law. I do not judge, it’s not my place. I have never told the family what they should do, I just felt that it was important for them to have the facts in a manner in which they could make informed decisions. My mother-in-law asks me for clarification on different aspects, and I give her the most factual but neutral information that I am able. I have been a member of this family for eighteen years, I lived their culture in the village, and still do here in town. It has just been an overwhelming situation for me, and when my nephew showed me the photo of his mother with his other sister and her baby, and the look on his face, well, my heart just broke all over again.

Also, thank you to all who have responded. I rather expected this post to sink like a stone. All posts have been a balm to my heart, and I truly appreciate your words.

15

{{{{kaiwik}}}} I can’t begin to imagine how difficult your situation is, but you, your family and skiffman’s family have my prayers.

16

{{kaiwik}} Alcohol is such a destroyer of lives, for both the drinker and the ones left behind. There are no easy answers in this situation, and I cannot imagine how difficult it must be for everyone involved. Please know that my prayers are with you all in this terrible situation. And I, too, pray that Babe isn’t suffering now. Just living as an active alcoholic is suffering enough; so I pray for peace for her and for all of you.

17

Kaiwik, I know next to nothing about the Native culture in your area or your family, but I am familar with poverty and alcohol in my own in-laws from Appalacia. Among the poor and also the minority ethnic there is often a great fear that their lives are not valued as other lives would be, and thus they will sometimes call for endless care and resist with all their might discontinuing care of someone in such a state. They see the years of medical support as a sort of proof that their lives are as valuable as those of the rich and the majority.

I also wonder if there are issues of guilt at work here - guilt that someone didn’t find her sooner, collective guilt at the damage done by alcohol, and keeping her alive someone atones for some of this.

Just random thoughts. I think the point already brought up that for them this may be the lesser of many evils is well taken. I don’t think it’s the sort of situation that has any good outcome.

Please accept my sympathies - this is a hard thing to deal with, and with it being on-going there’s no end and no resolution in sight. Continue to be strong, and if you feel a need to rant as far as I’m concerned you’re welcome to do so here.

18

Kai, everyone has stated their thoughts so much more eloquently than I could ever hope to. Please know that I am praying for you and your family to have peace. I can’t imagine going through this for so long.

I lost my mom to a stroke (complications after surgery) and we waited seven days before ending life support. I know it’s very difficult.

{{{Kaiwik and Skiffman}}}

19

I’m so sorry for you and your family’s pain. I hope that your and their suffering is lessened somehow, though I don’t have any good advice to give on how.

20

Kaiwik, thank you for starting this thread. I don’t have any answers for you and can do nothing beyond what others have done already here - offer my best thoughts for you and the family and to say that your story touched my heart. It sounds as if writing about this on the SDMB may be therapeutic for you. I hope you understand that if you wish to vent, cry, rail, scream, or calmly comment on your situation in whatever way you feel best, you have an interested and caring audience. Listening (or reading) is at least something we can do.

With heartfelt best wishes.

Phil/Mycroft