Thoughts on Death and Dying

Miscellaneous and Personal Stuff I Must Share
1

I’ve been thinking about death a lot lately. There are multiple reasons for that. My first born daughter, who was killed in a car accident when she was just one year old would be 27 next week. I’ve been hearing on NPR about the memorials for the Upper Big Branch Mine victims as the one year anniversary just passed. the report yesterday had me in tears on my drive to work.

And, my 87 year old Father in Law just had a stroke and is in the NeuroICU.

I’m an athiest so dying doesn’t hold any mystique for me. I don’t think that I’ll be reunited with the two children I buried when I get to heaven or my father or anyone else who was close to me. I think when you die you’re gone and that’s it.

My husband and I moved in with his parents last year to assist them in their final years. My father in law has Alzheimer’s and is 87, my mother in law probably has Alzheimer’s also (that’s my completely un-medical opinion) and is 89. They were struggling with their only son so far away so we moved 3000 miles to live with them and take care of them.

It’s been lots of difficult transitions for us but none has been as difficult as the past 10 days since Dad had his stroke. He already had a medical proxy and a living will. We signed a DNR at the hospital so they won’t take heroic measures to keep him alive.

Still, he’s catheterized, tied to the bed (because when he’s awake he tries to rip out the IV, Catheter and other items attached to his body) and now is being fed by a tube in his nose because he can’t stay awake long enough to take food orally.

When I look at him I hate that these may be his last days and it’s ending like this for him. I want to talk to hospice but my husband and mom are just waiting for the Dr. to tell them that this is the end. I asked my husband yesterday “what do you want him to get well for? So he can wander around the house in his bathrobe, confused, like he did before and your mom can yell at him when he misses the toilet? Maybe we should let him depart gracefully” But no one’s having
any of that.

My mother in law is completely surprised and shocked that he might die. “Can’t they cure this thing that he has?” I tried to explain to her that people get old and their parts wear out but she really doesn’t seem to accept that as reality. If you ask her she will always say she doesn’t want to die. She’ll tell you how healthy she is (she is really healthy and doesn’t look 89) and the idea that this is the end of her life never crosses her mind. Her sister, who is 85 thinks about dying all the time. When I told mom that she laughed and said, “why would she do that”.

I used to think that I wanted to live to be over 100, 107 was my number. Now I’m not so sure. I sure as hell don’t want to be restrained and fed bland, gross pureed food and wired with monitors, IVs, catheters, etc. I wonder how I’m going to make sure that doesn’t happen.

And yet the nurses and doctors are doing everything they can to keep an old man alive and for what? For us? For his wife? and while I can see the rationality and the reality in that question, when it comes right down to it, I don’t want to let him go either. I want him to get better. It’s like my rationality and my denial are duking it out.

I know it’s probably TLDR but I’d appreciate your thoughts, advice, experience.

2

I’m a nihilist so I think everyone is already “gone”.

3

For their pride, because it’s what they were trained to do, to give the family time to accept that he really is dying.

Both stories told before in these boards.

My Uncle J was a doctor; it’s been more than 20 years since he died but he’s still famous among local doctors both for his amazing diagnostic ability and for his complete inability to put up with fools. When he retired the local doctors held a dinner in his honor; two days later he walks into the office of the Head of Oncology at the local university hospital (one of the best in Spain)
“Well, hi, Doctor J! You know you’re not supposed to come in any more, right?”
“Oh, I’m here as a patient. I’m coming to tell you that I have liver cancer and I’m supposed to have about three months left to live. I’m guessing it will be a bit longer actually but in any case less than a year.”
“But-b-b… well, we need to establish a diagnostic, I mean”
“We already have. Remember I sent you some analysis three months ago, asking for your opinion, patient name of J. J. Martínez?”
“Well, yeah, but”
“There was no J. J. Martínez, it was me. Three months ago you had no problems telling me that man had 6 months to live, so don’t try to sweeten the pill now. I’m here to tell you that if you guys are running any clinical trials where one more liver cancer patient can be useful, I’m your labrat - but only for stuff that can help someone else. If you so much as take a single blood test in order to make me last longer and not because you sincerely think it will give you data that will be useful for future patients, I will come back from the grave just to screw up your sleep forever and ever amen.”

My father was sick for almost three years. I’d known there was a high probability he’d die of cancer in his 60s since I’d built the family tree for a HS exercise. Mom and my brothers were very much in denial, specially Mom.

One of the last things he told her, during what would be his last stay in the hospital, was “I’m dying. i AM dying, whether you want to hear it or not. It is not an option. But I need you to let go, I need you to let me go.”

4

I understand how you’re feeling but don’t have any advice, unfortunately. I’m so sorry you’re having to deal with this.

One suggestion I’ll make is check into things for yourself with a lawyer about a living will, medical power of attorney, that sort of thing. You can restrict measures a lot more than just DNR, so look into what options are available for you.

Also, can you ask the doctor yourself about hospice? Is there any time where you might have a moment alone to say, “I don’t think they’re being realistic and are waiting for you to eventually proclaim that he’s all better; can you have a serious discussion with us?”

5

And adding to what Nava said - for right now it’s their job, their duty, to keep him alive. There’s only a DNR order in place. If his other papers say “other than that, keep him going no matter what” and both his wife and son apparently expect that this will be carried out and that he will walk out of there with them, the doctor might not want to bring up the start of a very difficult discussion without at least a hint that he’s not going to get an incensed family screaming at the hospital’s head about the doctor that wants their loved one to die. He might have the guts in a few days to say something on his own but now might feel too soon. See if you can get an idea from the doc about hospice and other options than what is being done now.

6

Thanks for your responses. Nava I love the story about your uncle.

I’m a bit on the outside looking in unfortunately because while my husband and my mother in law don’t work (husband is on disability) I have a full time job to keep us in health insurance and so my visits are limited to weekends mostly.

I’ve had lengthy discussions with my husband about this and he mostly feels the same way. Rationally he knows that his dad isn’t going to live much longer but he doesn’t want to let go yet. I think we should talk to the Social Worker about Hospice but he thinks we’re “not there yet”. I think we maybe need to go there.

At the very least we’re discussing it which is a step in the right direction.

7

My future mother in law is in the hospital right now, having on Monday suffered a massive heart attack and related pneumonia. As of last night there are vague signs that she’s improving.

She is in late stage dementia, hemiplegic due to a stroke years ago, diabetic and fully incontinent. Even before the heart attack she could barely support herself standing. My fiance and I are her primary caretakers. He does the heavy lifting as she weighs more than I do. It is a 24/7 job. We get out of the house occasionally in the afternoons when she has a nap, and leave her in the care of her husband. It’s damned hard watching her decline, knowing that this isn’t a life any of us would want to live.

When we took her to the ER, my fiance respected his dad’s wishes and consented to have her intubated and, if necessary, defibrillated. I’m afraid she might die, and frankly, more afraid that she will live.

We have talked about having to make certain hard choices, but the opportunity to just “let her go” hasn’t come up, other than her husband wanting her intubated. I’m afraid that instead of a more palatable passive choice to not start treating an ailment will never happen, and that an active choice to stop a current treatment is going to be necessary, and I’m not sure he will be able to make that choice for his wife.

If I ever end up in her position, I’d rather be dragged out into the street and shot.

8

The idea of being dead doesn’t bother me. It’s either the afterlife, or non-existence, and I can do nothing about either one now.

What scares me is the process of dying. I’ve had far too many relatives succumb to cancer in lingering and painful deaths to want that to happen to me. I’d rather keel over suddenly, and be gone when I hit the ground than endure what they went through.

My Mom died of lung cancer. Her oncologist was well known for calling family meetings to discuss her with us, or break news. For some, that’s fine, and that method suited my mother, but it’s not for me.

Should I contract cancer or some other fatal illness, I want to be the one calling the shots, not the doctors. As long as I can be treated and have a reasonable expectation of recovery or at least long term remission, I’ll be the best patient they have. However, whenever it is apparent that treatment is not working, I’ll be the one to tell the doctors to call it a day and I’ll tell the family, not him/her/them.

However, becoming a guinea pig like Nava’s uncle appeals to me, too. I’d still be calling the shots in that.

9

Yes, exactly.

I have a friend who found out she had advanced cancer. The doctors had pretty much told her she wasn’t going to survive it and any treatments would only prolong her life but there was no cure.

She decided to decline chemo and radiation and instead threw herself a big party with all of the friends and musicians she loved (she was an avid jazz fan and the head of the local jazz society). She had the chance to say goodbye while having a good time with the people she loved and while she was still able to. She retired to her home after that and with some pain meds to keep her comfortable, lived her last couple of months the way she wanted.

My only wish is to depart as gracefully as she did and on my own terms.

10

This reply is long. Sorry. But I hope it helps.

Coming from a person with well-grounded faith in God, I’ve got a vastly different set of beliefs than you do, OP. I could go into a long sermon about how having faith(certain kinds, anyway) makes you feel a heckuva lot better. But I think I’ll spare you the preaching. Not what you were asking for.

But, at the same time, it’s a big part of what forms my views on death, so I’ll try to keep tham separate. Might not succed, but give me credit for trying, eh?

Fact of the matter is, I refuse to believe that death is the end. Even when I went through my agnostic stage, I just could not face the idea that when one dies, one dies. It was too frightening. So, I asked myself, what are the alternatives?

And that’s when I realized that there were no ‘alternatives’ to be had. One way or another, what happens after you die is going to be what happens after you die. It isn’t going to change just because you believe in something different.

If there really is no big father-figure in the sky who cares for you and made you who you are with his supreme power over the Earth, then it is not going to matter if you believe in him or not. Won’t make a difference either way.

So I stopped thinking about what will happen after I die, and started to think about how I wanted to leave this Earth. That was the part that I had a very small level of control over. I’m 20 and in perfect health(a little overweight, but I’m working on it), so that’s a long way off for me(hopefully). But when I saw the entire Terry Shiavo case sprung all over the evening news, with people clamoring to save(or let die) this unfortunate woman, I knew that there was at least one way I did not want to leave this world.

So I told the members of my immediate family my conditions for a living will. They know my preferences. So if they keep me alive like that, they’re doing it for them, not for me. I made my peace with death and dying. I want to die with as much dignity as I can muster at the time. I have made a commitment that I am not going to hack and claw for every scrap of life that I can muster when the inevitable is soon at hand.

And when I saw my father slowly waste away from cancer(not quite as badly as you’ve described you father-in-law’s situation, but bad enough that I know what you’re dealing with) this belief became reenforced. My father was a man of unwavering faith. He wanted to go with dignity to meet God. But with his sickness, it was either let him die of starvation, or let his system wear out.

The funniest part about people with faith is that a lot of them don’t have a much better grip on death than people without faith. When my father went to his prayer groups he always recived prayers for healing. And he told those people he didn’t want healing. He wanted peace. He knew he was going to die, and he wanted to go well and with peace of mind. And these people didn’t understand that. They wanted him to get better. A thoughtful gesture, but in the end it wasn’t something that was going to happen. But my father could have peace of mind. That, people could help him with.

I’m thankful that I was able to bring my father a bit of peace in his final days. Until about a week before he died, he thought I did not believe in God. I did, I just hadn’t ‘come out’, as it were, amoung our friends and family. I’m a private person with my faith, and I rarely attend church(Also, I enjoy science fiction/fantasy stories about vampires, demons, zombies and all things unholy. Work that one out in your head). But it brought my father immense relief to know that I was a believer. It was important to him, and I think it brought him a little peace, which was what he wanted the most as he was dying.

As he lay on his bed, in the house he had lived in for my entire life, my mother and I did our best to make him comfortable. People came by to wish him farewell and have any final talks they wanted to. I was about 24 hours ahead of my mother when it got so bad that we couldn’t handle it anymore. My father went to a hospice the next morning and he died the day after. I rode in the hospice ambulance with him(His final gift to me. I’d always thought ambulances were cool).

I was at home when my mother called me with the news. I knew what was going to happen, and I did not want to be there for it. I wanted to be alone. I loved my father deeply, and I did not see him on that hospice bed. All I saw was the shell that had not caught up with the soul. My father’s death brought more relief than pain.

Sorry for the novel about my father’s death, but it was a huge shaping factor in my views on death. If I have my way, I’ll live to at least 87(I want to see the tricentenial in 2077), and I’ll die of heart failure or some other way that does not involve getting on a feeding tube. But if that happens, I’m not going to hide from death. I’m going to let it happen with as much dignity as my particular method of death will allow, and I will be at peace with everyone I know. At least, that’s the plan.

So I hope that your family allows your father-in-law to die with as much dignity as possible. It’s what I would want, and while I didn’t know your FIL, I’m willing to bet that it’s what he would want. It sounds like his mind has gone past the point where peace is something you can grant him. It’s hard, and not an easy thing. But your family members aren’t keeping him alive for him. They’re keeping him alive for them. They need to let him go. Only then can the healing start with those of us still here on Earth.

Peace be with you and all you love. Giant Spaghetti Monster Bless.

hugs if you want them

11

My mom was just diagnosed with advanced liver cancer. We decided to not treat anything–not the cancer, not any infections she gets, nothing that will prolong her life. Comfort care only is the term they use. You can ask for that, and make it clear to the person who will be making your medical decisions if the time comes when you can’t. Your death doesn’t have to be like your FILs.

12

velvetjones - It’s a tough situation to be in. My father said he’d fight his lung cancer to his last breath, and he did. But he died at home, in hospice care. He was cognizant until he went into his final coma, and we didn’t have him fed by tubes, or intubated.

Brynda - {{{hugs}}} You have my number if you need to talk.

StG

13

Just a few thoughts. Having gone through this sorta thing recently I can relate. Also, to be honest, I really can’t find the strength at the moment to type much out about it.

Don’t feel guilty for wishing it was over. Don’t feel guilty for wishing for the terminally ill person that it was over for THEM. I think society has brainwashed us to think these are bad things. IMO they are the most reasonable and compassionate and civilized thoughts one could possibly have.

Best wishes and my condolences.

14

Ahm agin it.

15

“I walked a mile with Pleasure, she chattered all the way, but left me none the wiser, for all she had to say. I walked a mile with Sorrow, nary a word said she, but oh the things, I learned from her, when Sorrow walked with me.”

16

So beautiful and true. Where’s this from?

Also I want to add my best hopes for strength and comfort to velvetjones and to everyone else who added their own sadness to this thread.

17

I don’t have anything particularly wise to say, merely that my thoughts go out to you velvet.

18

Thanks for your thoughts everyone. I do appreciate it. They moved him to the Neuro step down unit so he’s not in ICU anymore which I suppose is a sign that he’s improving. He isn’t eating much (probably because they’re feeding him food that tastes like shit), I’m going to ask today if we can bring him something we know he likes.

Still, I’m conflicted. Part of me wonders why we’re keeping him alive since he’s really confused and really a shell of his former self mentally, and part of me doesn’t want him to be gone yet. I guess that’s the denial, I just want things to go back to the way they were which wasn’t perfect but at least we were all together. We still had a few laughs together at the dinner table every night.

I’ll take each day as it comes.

19

Beautiful or not, sorrow just made me want to push her off a bridge and find pleasure. She can chat all the nonsense she wants. Life in all it’s senseless glory is in her. You will have to suffer through this time but if your father in law is mentally aware then he wants you to enjoy life and regrets this ending. You do him a favor by pushing that taciturn wench off a bridge as quick as possible.

Is one massive stroke too much to ask? That’s all I ask when I go. That and a blowjob. That’s going to far isn’t it? Damn it, I’m going to die a lingering death now aren’t I? I meant to say somebody holding my hand.

20

Take each day as it comes. That’s what my Mother in law was telling me today.

I’m reminded of my friend Carol who’s father just died at age 92 from COPD and heart disease. Her mother couldn’t understand why he died since he didn’t have cancer. Apparently in her world if you don’t have cancer you don’t die.

My mother in law has stated more than once, " at least his heart is good so he won’t die" when I try to point out that his mind is gone she can’t think about that and when I ask her if this is how she’d like to live, not eating, bed ridden, incontinent and half out of her mind she can only say “I don’t know”

But then tonight I realized that I should just shut the fuck up. This isn’t my family and it’s not my decision to make. I’m here in a supporting role. I haven’t been a part of this family long enough to be throwing my opinions around (my husband and I have been married 6 years this month). I barely knew his dad before his mind started to go. His mom either. For me to come in and be offering opinions on end of life decisions is just presumptuous.

Fuck it all I hope to hell I can avoid this type of ending in my life.