By: Prescott Cactus
dou·la
ˈdo͞olə
noun
plural noun: doulas
a woman who is trained to assist another woman during childbirth and who may provide support to the family after the baby is born.
The word “doula” comes from the ancient Greek meaning “a woman who serves” and is now used to refer to a trained and experienced professional who provides continuous physical, emotional and informational support to the mother before, during and just after birth.
Elena Gooray over at Pacific Standard Magazine writes about End-of-Life Doulas. She spoke with Deanna Cochran, 55, Austin, Texas, an end-of-life doula, hospice nurse, and founder of the End of Life Practitioners Collective. It’s an international organization that provides support for family and a community for practitioners.
What Deanna is trying to do is open up to the world to the conversations about death in an all encompassing way. Giving birth is a 9 month ritual culminating with bringing a life into the world. Death can be a sharp pain, a cold body and a financial transaction with a funeral parlor. . . If we let it be.
The birth experience includes OB-GYN’s, maternity wards, pre-natal care, sonograms and baby showers. Deanna’s organization tries to expand our lives to include the same richness / fullness to death that birth currently receives. Her organizations site even has a Podcast devoted to Palliative Care and every modality or idea that could possibly relieve suffering at the end of life.
Time marches on and we as a society embrace new life with vigor, but death with fear and apprehension. This won’t change unless we expand ourselves. Take a look around Deanna’s site. With years of hospice experience, I’m learning some new things.
Special thanks to valued front pager Richard Mayhew for the heads up on the article and valued commenter raven who recently lost a good friend JA.
Prescott Cactus
Prescott Cactus
Links not working. Grrrrrrr
Prescott Cactus
Pacific Standard Magazine
Podcast
Prescott Cactus
Fixing of the links. . .
Pacific Standard Magazine
ELPC Podcast
Prescott Cactus
ETA:
The End of Life Practitioners Collective site is a good resource to give a good once over and bookmark. It provides alternatives that are a little outside the box for most of us. Western society doesn’t do death very well and some of the practices available at ELPC may bring you outside your comfort zone.
I have to admit, I’m a hospice guy. If you live in an area that has a good not for profit Hospice consider yourself lucky and use them.
At ELPC, along with Soul Midwives, Shamans and Death Midwives are Thanadoulas and Thanatologists. Not 100% sure on this, but their prefix may come from ’Thanatopsis,’by William Cullen Bryant. It is a poem of encouragement and reverence for life and death. It informs us of the fact that everyone dies, no matter how great or small one is in life.
Great read, a little long. I read this at my Mom’s services per her request, and again when I sprinkled her ashes a few years later on Mothers Day. It’ll be 26 years next month. I’ve lived 4 years longer than she did. Sad.
RSA
“In Greek mythology, Thanatos was the personification of death.”
Major Major Major Major
Thanks Prescott. I’m going to give this all a gloss and then send it to my mom, who’s got this on her mind lately as Alzheimer’s finishes off her mom.
Prescott Cactus
@RSA: That piece fits the puzzle better. Thanks !
Keith G
As has been mentioned before, I volunteer at a hospice for folks with HIV. While that scene has changed in the last few years, what hasn’t changed is how much sustenance I get by helping out in such a place. I have been able to understand the transition from life to what’s next and I have seen the value in palliative care provided with a sense of genuine regard for the folk who are with us.
As I process my own recent diagnosis of cancer (one that has a strong chance of being survivable), I find the existence of that hospice and the amazing team who work there quite comforting – just in case : ) .
Prescott Cactus
@Major Major Major Major: Hope it makes things easier. Alzheimer’s is so very tough on the family and often the patient.
I am returning to the journey next week. Dad had his Doc appointment last week with a hired gun physician from Human Grinding Hospital Corp. LLC. I brought up hospice, but it clearly discouraged as providing no benefit Dad doesn’t already have access to. Clunk; Wrong answer. I’m not going to get into a pissing contest with my Dad’s doctor.
This week he’ll be interviewed by the hospice folks where I volunteer. He has already been accepted twice, then kicked out each time because of great health turn-a-rounds. Even with the built in denial that family members carry, I don’t see a reversal this time. The aortic pig valve that was replaced 19 years ago is failing and Congestive Heart Failure (CHF) is progressively rearing it’s ugly head. No surgery to repair or replace the valve as Dad now allows only yearly exams and blood work.
WereBear
Thanks for this. There is much suffering which can be avoided with a little sense and support.
redshirt
So I’ve finally got the full story and through a collective decision, my father and his brother agreed to let their sister die without going through more intrusive attempts to save her. They had already amputated her leg, and were considering a tracheotomy to insert a breathing tube. But she had a living will and was very clear about no extraordinary measures to keep her alive. So they pulled out the breathing tube, put her on morphine, and she died an hour later surrounded by family.
I assume this was fully her wish, but it generates a lot of conflicting emotions, as she seemed to be improving but the doctors said they could no longer keep a tube down her throat to help her breathe as that would cause permanent damage to her throat. Could she have lived if they did the traech? Maybe. Would she have wanted to live after that? It seems not. She had suffered so much for so long, she was ready to go.
Tough choices for everyone.
Prescott Cactus
@Keith G: Of course, thoughts and healing prayers to you with your recent diagnosis of cancer. I imagine it must be tough just typing those words. I’m glad of the strong chance of survivability.
I highly commend you for your work with hospice and especially with those having HIV. The time and energy used being a hospice volunteer is returned many fold on many different levels.
I recommend it to all, but many may not feel comfortable. To them I would reply, you can do clerical or office work and be no closer to death than if you were driving by a hospital. One’s comfort level may increase during clerical volunteering and you may want to consider seeing a patient or more detailed involvement. It may not, too,
Peace !
Central Planning
@Keith G: Having been diagnosed with cancer just over a year ago (fortunately a highly curable one), I would advise you to get someone who you can talk to for sorting out your thoughts. I realized I probably should have had one about 9 months after diagnosis/surgery, and everything is fine. I think either my GP or surgeon should have suggested it to me. Of course, I probably would have said no, I don’t need that. Ahhhh, hindsight.
Anyway, fuck cancer.
Betty Cracker
@Prescott Cactus: I lost my mom (who was in her late 60s) a couple of years ago to a heart valve that failed. She went into CHF and spiraled down in a few weeks. It’s rough. My thoughts are with you and your family.
Prescott Cactus
@WereBear: You’re welcome !
@redshirt: After the death of a close family member I feel that there is always seconding guessing. Should I ? Could I ? It sucks, but I think it is natural and even healthy. Time sands down the painful memories of these tough decisions.
Just by what you’ve shared, your sister’s wishes about extraordinary means were very clear. Thankfully you were able to make a collective choice with your Dad and brother. That doesn’t always happen.
Peace to you and your family.
KlareCole
This was a nice article in many ways. Could see it as a tool to get a family talking. Both of my parents and a dear nephew died suddenly. I don’t have much experience with hospice and lingering passages. But it seems like it would help people express last thoughts, feelings & goodbyes. Not to mention the obvious mission, keeping the dying person comfortable and loved. Choice is such a sacred thing, hospice allows that. Some choice in how we die would seem very comforting.
Prescott Cactus
@Central Planning:
I’m with you on that.
Also with you for giving consideration to counselling, shrink, group sessions or whatever. We don’t face death well and cancer is still scary as all get out, even when you’ve got good odds and great oncology team.
redshirt
@Prescott Cactus: It was my Aunt, but not just any Aunt, but like my second Mother. Her passing is difficult but not unexpected and there’s this strange and guilty feeling of relief – for her, for everyone. She developed serious diabetes as a 19 year and managed to live to 67, but the past 15 years or so has seen her suffer so much, both diabetes related and cancer related and some strange condition I always forget the name of, but which made it hard for her to lift her arms, move her legs, lift her eyelids, and breathe. She’s spent months upon months in the hospital.
The end started a month ago when she was hanging out in the social room of her special needs apartment complex, and she stood up and passed out, breaking her leg in the process. She left the hospital early against doctor’s orders because she was so sick of hospitals, but that was probably the event that killed her, since she developed an infection in the broken leg that sent her into sepsis shock and she never woke up from that.
Thanks for the kind words. Everyone’s upset, but at the same time, there’s a palpable sense of… relief? Release? Her suffering is finally over? It’s hard to explain, and it’s filtered with guilt.
Eric U.
@redshirt: I don’t see how you can avoid tough choices. My experience with a nursing home for my dad was that they were absolutely no help whatsoever. Once we produced a living will they were asking about every little thing that they did.
satby
@redshirt: I’m sorry for your loss, red shirt. This may tie back to what you discussed in the overnight thread,if so I understand your question better because you were asking it out of grief. I don’t know what brought your aunt to the end, but I do know that we often put the dying through needless pain in futile attempts to prolong the length of their life without considering the quality of life. Shortly before my own father passed away much too young, his heart stopped and he was resuscitated. As soon as they removed the tube, he made us all promise not to put him through that again, he found it so harrowing of an experience. He was dying anyway, and he knew it.
Condolences.
Your aunt sounds like a wonderful and wise woman, her living will made clear what she wanted. It’s to your dad and his brother’s credit that they honored their sister’s wishes and let her go gently, as she wished. I hope you find comfort in her memory, her strength, and in the thought that her struggles and pain are over.
redshirt
@Prescott Cactus: On this point, the hospital provided a social worker and a therapist throughout this process. It was very helpful.
Prescott Cactus
@Betty Cracker: Thanks Betty. I hope your Mom had some quality time as things deteriorated. My Dad first showed symptoms about 6 months ago. Legs and gut swelling from fluid retention. Weight gain even as he diets. A walk across the street “winds” him.
I’m pretty sure I know where this is going and that I am a tourist, not the guide of this journey. I truly believe nothing can prepare you. My Ma got 3 months to get everything straight and got 5.5 years of great live with cutting edge treatment. Over 5 years to prepare and everything still crumbles around you. It takes some time to pick yourself up and wipe yourself off.
I hope you are over the troubled times of her passing.
cckids
My son spent the last 6 months before he passed in a hospice-at-home program, and I cannot recommend it highly enough. The personal care from the nurse and the CNAs were wonderful, as was the support of a counselor and just having an agency that takes so much day-to-day stuff off the shoulders of the family (ordering supplies, doctors coming to the house, getting better pain meds).
To me, the biggest difference was how they helped us get to a point of acceptance and peace with the fact that there was no further intervention medicine could make, and that an end was coming. All our son’s life, we’d been told “he probably won’t live to be 3”, then 5, then 10 , and on & on. He was 32 when he died, so we’d gotten so used to just nodding and ignoring the predictions. It was a major mental shift to accepting that this time, there wasn’t going to be a long reprieve. And, again, it brought so much peace to our entire family.
The day my son died, Kim (our nurse) was invaluable; he had a pulmonary embolism; so it was sudden and terrifying. She arrived in no time, let us know what was going on, and got him comfortable with meds as we decided to stop the respirator and said good-bye. We weren’t ready, because are you EVER really ready? But I was so, so glad we chose to keep him at home, and that the hospice agency (Nathan Adelson) was there for us.
I haven’t made it all the way through the doula article yet, but it is resonating with me. Our culture NEEDS to learn to be honest about death and end of life.
satby
Hospice is such a better way to ease the passage for a person and family. I worked on the trauma floor of a medical center for a year, and it was heartbreaking watching families go through the denial and refusal to accept that their loved one’s life was ending, though it was often because that fact was never made clear. There were patients that had been on life support and comatose for years, because family members couldn’t agree to withdraw the support even though there was no hope of recovery.
Prescott Cactus
@redshirt: It is very hard for the mind to process joy and relief from a close one’s death. Even when it is absolutely the best thing that has happened. Leaving a hospital “against doctor’s advice” (ADA) is not always an easy task. Been there and done that with Dad in an ER.
It shows a strength and conviction that “I want out of here”. If you ever think you are having too much trouble with grief and accepting her death, consider “seeing someone” . It sounds like you went down a long and winding road and that often take a toll on loved ones and caregivers. Talking, even here helps.
Peace !
redshirt
@satby: Thanks satby. I’ll be OK as will everyone. Just very sad such a sincerely nice person has left this world. Also an excited Hillary supporter very much against her brothers wishes. We just lost one vote in Maine. She was the only person in my family I talked politics with and I’ll miss it.
Due to her health issues, she never married nor had children. And since my parents were so young when they had me (18) and she was the older sister to my Dad, she took a leading role in my childhood. I always sent a card and called her on Mother’s Day for this reason. She was very smart yet felt trapped in her broken body. It was sometimes hard talking with her because she would get borderline suicidal, and what really can you say to someone who’s been dealt such an awful and through no fault of her own? Not much.
ThresherK
My mom, an RN, worked at the first hospice in our state, a number of decades ago. She has been gone for a long time herself. Nice to know this is becoming much more of a thing.
redshirt
@cckids: Best wishes. Hope you all are recovering from your loss.
Prescott Cactus
@Eric U.: Sorry you had that experience. You would think that rather than create more waves they would try and make things smooth once your Dad’s wishes were spelled out for them.
redshirt
@Prescott Cactus: I hope you are well recovered from your loss.
I’ll be fine, thanks. To add a strangely complicated twist to this story, my Aunt’s death was 30 minutes before my niece’s 5 year old birthday party, to which much effort was spent. It was surreal to be there with the adults all fairly numb and sad and hiding it and the kids being kids.
Watching their joy at the simplest things in life provided quite a contrast.
redshirt
@Eric U.: That stinks. Sorry for your loss. Hope you’re doing OK.
Prescott Cactus
@satby: What wonderfully touching words. Much kindness to you and redshirt.
@redshirt:
I’m glad for you. I think we can sometimes feel alone even when surrounded by family. Peace, strength and healing to you.
Shell
My Mom is in the mid-stages of dementia. With the help of home aides we’re currently taking care of her at home, cause my family is in the process of moving her and me (I have my own mobility issues lately_) to their state. There, well be moving her to a facility.
My first experience with hospice wasn’t very helpful. An interview with a nurse and a social worker ended with their decision that she didn’t quite qualify yet, even though her doctor had signed off on it. And that was it. Told I could reapply later but no suggestions or ways to help.
redshirt
@satby: I urge everyone to write a living will for this very reason. Without clear direction from my Aunt, I’m not sure how this would have played out. Who wants to be the family member who says “End it”? No one, for sure. But when the wishes of the person are clearly spelled out, as well as who should make the decision, it becomes much, much clearer.
Ben Cisco (onboard the Defiant)
@redshirt: I am very sorry for the loss you have suffered. I have become intimately familiar with that pain. May the Prophets grant you peace.
kdaug
This resonates. In a month I’m going to see my mom and her husband again. She’s mid-70s, not sure how old he is. I’m 49, ~140lbs, no health problems. My two sisters, (older one +2, younger one -1) are both cancer survivors and are both overweight (little one is obese). We need to bring this topic up.
Odds are, I’m going to be the one, in the next 10-15 years, to be handling this EOL shit.
Mom’s got a clear eye, ex-Navy, ex-CDC. She’s got the will (by def) and I assume the resuscitation orders. But this is going to be an damned difficult conversation to have, for her and her husband. (Oh, yeah, I’m the only spawn without kids. So.)
Advice appreciated.
cckids
@redshirt:
Completely understand. Both with my son and with my Dad, who passed of leukemia after going through every medical intervention possible. The difference between what he went through and what we chose for my son was stark. There is definitely relief in letting go of the struggle and stress. I know my dad was so, SO tired of fighting, but kept on because my mom would not accept letting him go. It was difficult and really sad to watch.
Prescott Cactus
@cckids: You must have filled you son with much love and joy for those many extended years you never thought you may have. Acceptance and peace must have been difficult with all the life extensions you received. I’m glad you found peace and had so much help on the day of his passing.
Take care and I hope your healing more each day.
cckids
@satby: You put that so elegantly and compassionately, with such empathy. You are a remarkable person.
cckids
@redshirt: And to you as well. I had an aunt (well, a great-aunt), who played a similar large role in my life. She passed 9 years ago, I’ll always miss her.
Prescott Cactus
@Shell: I’m sorry to hear this. For the most part, hospice eligibility is defined as the normal decline of the patient and their illness will bring death within 6 months.
When settled in your new place contact all the hospice organizations you can (I prefer not for profit – rare nowadays) Keep the letter you got from the doctor saying Mom is hospice suitable. Try again.
I hope all this works out well for your family.
redshirt
@kdaug: Whenever the time seems appropriate or even border line appropriate, have the talk. It has to be done but no one ever wants to do it for obvious reasons, so it must be pushed. I hope it will bring you closer together when done too.
redshirt
@Ben Cisco (onboard the Defiant): I don’t mean to compare losses, but the loss of your wife still strikes me. Your strength in the days since has been inspiring. I hope you are well. Thank you for the kind words.
redshirt
@Prescott Cactus: One factor that you haven’t mentioned is insurance. Man do they suck.
When health decisions are made for financial reasons over health reasons, you know your system is upside down.
Prescott Cactus
@redshirt: No one wants to be the one who wants to end it and the tragic thing is there may be someone who says no, no , no we have to keep Grampa alive. Along with patient suffering it can implode a loving family.
Think of it as a going away present for your family.
Here is a prior blog post with some things to have prepared.
cckids
@Prescott Cactus: Thank you! I have the highest respect and regard for hospice workers. You are an extraordinary person.
amygdala
@redshirt:
It is such a strange thing, isn’t it? Over 30 years ago, my Mom and I were with my Dad’s mother when she died. My Dad was racing in from the Middle East, where he was working, but didn’t make it in time. Grandma had metastatic pancreatic cancer, was down to 90 pounds, in pain, and floating in and out of consciousness.
After an afternoon of her breathing being irregular, and my Mom and I holding our breaths, Grandma would breathe again. And then, she didn’t. The sense of loss–she was stern, tough, and generous in equal measures–was profound, but Mom and I were also intensely relieved her suffering was at last over. My Mom was convinced to her dying day that Grandma purposefully died before my Dad could get there, to spare him from seeing her in such a bad way. And that she waited for me to get there to teach me a final lesson before I started medical school a few months later.
I don’t know about any of that. But I do know that understanding, before all the distancing intrinsic to medical education and training, that combination of sadness, relief, and guilt helped me be more present for families of some of my patients. And for that, I’ll always be grateful to Grandma.
Prescott Cactus
@kdaug: Congrats on looking ahead and realizing that you may be the one in charge of many EOL issues for the whole family.
Advice: I would start with the fact that Mom is dialed in already and that you start a conversation with her when her husband is present. See if you can find out how prepared Mom is and begin working on her husband to at least know his desire and intentions about EOL care. Once you have talked to Mom and hopefully made headway with her hubby, you can then slip that into conversations casually with your sisters. go slow, but set a timeline in your head for goal of getting everything done. This stuff slips away very quickly when not on the front burner.
Hope that helps.
kdaug
@redshirt: Yeah, that’s a tough conversation to have. “Hi, mom, good to see you, but we need to talk about how you want to die, because your daughters aren’t likely to outlive you and I’m likely to be the one”.
Fun.
Renie
What a timely post. We are dealing with this end of life/quality of life issue for my mother-in-law right now as well with my brother’s father-in-law. To see elderly people go through the difficulty of aging without any dignity is horrible. I hope when its my time its fast and my decision.
kdaug
@Prescott Cactus: Helps a lot, Prescott. Like I said, mom’s got a steel eye on these things, but the husband is (ahem) different. And I have no idea how to bring up my siblings. (Then we’re talking about odds, and who knows when lightning/buses happen… but I haven’t seen many old obese cancer survivors)
redshirt
@kdaug: Indeed. Not fun.
Once the dust settles, I’m going to have the talk with Mom and Dad. But since they are only 18 years older than me, I’m thinking they should be prepared for the talk with me too.
Prescott Cactus
@redshirt:
I’m not very in tune with insurance, but I understand that if you are eligible for hospice, Medicare kicks into “we’ll give you a lot more***” as they know your needs increase with death’s approach. The 6 months is flexible in that you can get extensions if you aren’t declining like they had predicted.
They only boot you when you show marked recovery that makes death seem not a reasonable expectation.
*** Oxygen, hospital beds at home, social worker, etc.
WaterGirl
@kdaug: I think we need to work on your presentation a little bit first. :-)
kdaug
@WaterGirl: That would be so out of character…
redshirt
@Prescott Cactus: Another factor in my situation is my aunt was supported by the state for the past 20 years. She clearly couldn’t work, so she’s been supported by the state since then. My father and his brother are huge conservatives, borderline wingnuts. I’ve tried to point out to my father that the only reason his sister gets any care at all is because of the welfare of the national and state governments. And if it weren’t for that welfare, well she would have been dead decades ago or he himself would have been on the hook for hundreds of thousands of dollars in health care costs.
Don’t know if it sinks in at all. We’ve argued about it in the past. Though I have some small hope, especially now with this situation, and Trump. Who he says he will not vote for.
Prescott Cactus
@cckids: Thank you so much.
@kdaug:
Not much better than “could you pass the turkey and here’s a folder for everyone with Durable Health Care Power of Attorney, Durable Mental Health Care Power of Attorney, Living Will, and a Do Not Resuscitate form. Oh, and I’d like those signed before dessert, OK”
kdaug
@redshirt: yeah. Speaking of which, I’m debating the DNR tattoo. And just plant a sapling over my hole. An epic wake, but no formmaldyhide or toxic preservatives. Let my death fuel new life.
WaterGirl
@Prescott Cactus: Dumb question, but who is signing what? In your ever-so-delicate approach to the subject at a holiday meal! :-)
You are handing your forms to everyone, and they are signing them? Or you are encouraging everyone to sign the appropriate forms for themselves?
kdaug
@Prescott Cactus: Not wrong. This is our annual 5-day mother/son time, though, so it won’t be that abrupt… but it is on the agenda.
redshirt
@Prescott Cactus: LOL. Thanks for the good laugh.
Prescott Cactus
@Renie: Here is some more info. I would suggest you start getting your ducks in a row as soon as possible. Someone usually ends up taking command and it isn’t always the most qualified, but the most emotional.
End of Life paperwork
Hospice Care
Care homes
Hope this helps. I’m feel I’m becoming the Balloon Juice Dear Abby of Death.
gogol's wife
Thanks for these threads. They are very important.
redshirt
@kdaug: I was thinking how anyone ensures the proper paperwork is seen by the proper people at the proper time. What if I’m traveling and shit goes south – how would a hospital in LA know anything of my wishes?
This seems like the only situation in my mind where a tattoo (or dog tags, or a legally binding card in the wallet) makes sense.
satby
@redshirt: The trouble with living wills is that if a close family member disputes the directive, a hospital often wants to avoid being sued by that family member for “murdering” their loved one. Yes, the hospital would win, but litigation is expensive and the other family members will often prevail on the recalcitrant one in the end.
Unfortunately, the end can take weeks,or in the case of Terry Schiavo, years. She wasn’t the only person kept in suspended animation like that, but it seldom makes the news.
So if you want your living will directives followed, you also have to appoint a health care power of attorney, make your wishes explicit to that person, and make it clear other family members don’t have veto power.
RSA
@redshirt:
Sometimes tremendous guilt. I see that on a Web site I frequent, for spouses of people with Alzheimer’s disease. You’re a caregiver, and you’ve put your life on hold, maybe with careful forethought about alternatives, but maybe because you have no other choices. You might be well-suited to the situation. If not, you might be able to adjust. You end up having to be careful thinking about the future, because you know that it ends with someone’s death: a release, but also a new flood of pain.
satby
@cckids: I have always admired your writings about your son, his life and his passing. I think you are remarkable.
redshirt
@satby: Agreed. My Aunt had it well done. Her wishes were clearly expressed as well as who was to make the decision. I was number 3 on the list after her two brothers, I suspect because I spent much of 2011 with her at MGH in Boston because I was the only relative who lived close by. She almost died two times during that period, and had the document produced in 2012 when she finally got home.
Prescott Cactus
@WaterGirl: If I was serious and I wasn’t, I would have everyone’s forms pre-filled out and awaiting their signature. If I was sitting around a table thinking I may be the last man standing, I would try to get a conversation with each and everyone started, most likely individually and find their desires and EOL wishes.
If it took a couple of conversations over a year period I think that would be good. If all else failed, fill everything out and figure a way to drop the egg in their lap. Do it on a day that a bank is open because I think some stuff needs notarization. If you feel you had to give them the pre filled out forms, you better get that paperwork signed ASAP, because it will go into a filing cabinet.
Your own personal paperwork should be in the hands of your Doc’s, and the person you select as being “the one” to deliver you to greener pastures. You really should make everyone aware of your desire, so that your guide will not receive any crap from back seat drivers.
Prescott Cactus
@redshirt: I’m glad I could bring a smile to you. Laughter is one of the best remedies for the recent experience of death of a loved one. It’s hard.
redshirt
@RSA: Alzheimer’s seems like the worst thing of all, since it is an inverse of most dire health situations – the mind goes, but the body remains. Usually it’s the opposite.
This usually sounds morbid but here it seems ok: Death is an intrinsic part of Life. You literally cannot have one with out the other. As such, we should be more realistic about death and deal with it rationally, as opposed to a tragedy that is somehow unfair. I know I know, easy to say, hard to live, but it’s the truth.
Prescott Cactus
@gogol’s wife: Thanks. I should have put them in the bottom of the article or the first post. I’m think that they are informative, but unless you have a recent brush with any of the topics you may just wonder on by to an open thread.
I’ll make sure that I provide those links in the future.
satby
@kdaug: cckids said something very true here:
Trust me, those of us who are a bit older (and I’m only 61) think about the time left, how to live it well, and what should be prepared for when the end is near. But a lot of people don’t act on those thoughts because they think they have enough time, or the family will be too upset if they bring it up, or the family will just know what to do, or they may be in denial of the whole EOL thing even though they’re very aware time is passing.
So it can be a relief for your clear eyed, practical mom that you want to understand what her preferences are. You can use something in the news, or even this discussion, and start with what you would want for yourself, should the need arise. That’s a less direct opening and the talk will happen.
Prescott Cactus
@redshirt: The paperwork I linked to is state specific. I know some snowbirds (Arizona & some wonderfully cool place to Summer out of state) have a copy for each state.
I’ve never given the thought to being on the road in another state or even another country a possibility. . .
Prescott Cactus
@satby:
You are full of much kindness and wisdom.
RSA
@redshirt:
Right, rationality is much easier when it’s abstracted away from personal experience.
satby
@Prescott Cactus: (blushing) as are you. These have been invaluable threads, because death does come to us all and our society handles it poorly. You’ve shined a light on an unknown place for lots of people.
I also come from a very ethnically Irish background, which tends to make us less avoidant of the EOL issues (in my experience). Kids go to wakes as babies, it’s a part of the stream of life. So if I sound grounded at all, that’s my family approach and I can’t take credit.
A long life lived well is to be celebrated, and long can be relative, such as with cckid’s son, who was never expected to live past childhood. Or your aunt, redshirt, who in spite of a life-threatening systematic condition lived into her 60s and was a beloved second mother to you. Life isn’t guaranteed, and all of us don’t get to ride until we hit our nineties. It behooves us to prepare for the end of that ride at least as much as we prepare for the other milestones.
redshirt
@satby: Amen satby. So very well said. Thank you.
WaterGirl
This thread reminded me that I needed to check in with my friend whose wife died on Friday morning. He sent me email to tell me the news on Saturday, and I had written back then, but a day is a long time when you lose someone.
I sent him an email message and he called me as soon as he got it. His 3 girls had just left for home (in other states) and this was his first time alone in the house. His wife was put into hospice (brain cancer) before Christmas in 2015, so she has lasted more than a year and a half more than expected. What she has lived with this past year would be anyone’s worst nightmare.
Anyway… that’s a long introduction to get to what I wanted to say. George was telling me that when it seemed like this really might be the end this week, the hospice folks said it was time to call in the guy with the harp. So this fellow shows up with his harp, and it turns out that he specializes in helping people along at the end. So he takes her hand in his and takes her vitals and talks to her and then he takes out his harp and starts playing it, slowing her breathing as he plays. I think this was the most helpful to my friend of anything the hospice people have done over the past nearly 2 years. The harp guy came one more time this week, and it was an incredible comfort. Hospice people are truly angels here on earth.
Prescott Cactus
@ThresherK: She was a pioneer and a trailblazer. She’s in my thoughts and prayers.
@satby: Blushing indeed. These threads bring me warmth as I am able to get some info out there and maybe, just maybe, get the conversation started.
I grew up with half of the family Irish and the contrast with my mother’s German heritage, it proved interesting. The old saying was the difference between an Irish wake and an Irish funeral was one less drunk.
As those with “the brogue” have already departed, so has the remaining family become more “American” in their customs including death. I was blessed that my mother was so open about death when given a terminal diagnoses in her mid forties. She fought and suffered the treatments to get one more sunrise. After her final hospital stay she was told and she knew. One month. They had stopped doing scans and certain blood work that was once a vital benchmark of her health. She understood and had reached acceptance. She walked up 3 flights of stairs and passed only a few days later.
My father, who has reached his mid 80’s, against all odds, realizes that death is coming and almost embraces it. Almost. He still instructs me to “give him a kiss on the forehead and kick the plug out of the wall when I leave the his hospital room”, if that’s where he is.
I’m blessed.
Prescott Cactus
@WaterGirl: @WaterGirl: That sounds like a great program for a hospice to have. It was kind of you to follow up with George as I would think that first time in the house alone has got to be spiritually painful.
Dare I ask how your paperwork is progressing ?
satby
@WaterGirl: The harp guy sounds beautiful. I would like to go out to the sound of a harp, what a comfort that must have been!
Ruckus
@Prescott Cactus:
My mom was around to see her daughter die and I’m now older than my sister when she died, in hospice, from cancer. She fought the cancer for years, in remission twice but in the end she lost that battle.The number of people who said the she must not be of sound mind to make that kind of decision actually astounded me and I had to tell them to shut up and listen to her. It was her battle, and no one deserves the power to make that decision for someone else if they are conscious and at least minimally capable. I had to make that decision for my dad because he wasn’t even minimally capable. We deserve to live our lives the best way we know how without harming others and we have to be able to die in the same manner. If you are afraid of dying then I think you are afraid of living as well. It is all of one piece, they can not be separated.
redshirt
@Ruckus: Amen. It’s a fine line but is clear on one side or the other.
Prescott Cactus
@Ruckus: I watched the slow conversion my mother made as far as treatment went. When it was “just” breast cancer the recommendation was removal, no chemo or radiation. Then again the same diagnoses and same recommendation.
She told me then she was glad because she didn’t think she would ever go thru the suffering that aggressive treatments caused. 2 years later the cancer had spread and they told her 3 months. A woman in her late forties. Her goalposts had moved. Her event horizon had been reduced to one season.
She was extremely lucky with tamoxifen which was still being made from tree bark before it eventually was chemically synthesized. At some point it quits working. One drug made her hair fall out. The next dropped her blood pressure so low they had the paddles, manned and waiting in the hall of the hospital room they administered it in. One more sunset.
I have an appreciation of life and I think a relatively healthy relationship with death. I could never have endured the the suffering my Mom pushed thru most of her last year or so. Courage, strength determination. She also continued to go to work as an accountant whenever she could. Great employer, shitty insurance, then no insurance. Wondering if your Catastrophic Health Insurance Plan was going to funded by the State of Illinois. I don’t know how she could get up in the morning nor how she could her head on the pillow at night. I miss ya Mom !!!
@redshirt:
True!
redshirt
@Prescott Cactus: Your Mom sounds amazing. How long has she been gone?
Prescott Cactus
@redshirt: From the bottom of my heart, thanks. She will gone 26 years next month. She ran mini marathons, ate 5 veggies / fruit every day was the picture of good health and was a bundle of awesomeness.
My Dad worked with asbestos, smoked for a while, drank for a while and worked in chem, petro and nuke plants. He’s getting close to his mid 80’s. We sometimes marvel at the bad hand she was dealt and how much she would have loved to have experienced (some) of the changes the world has seen.
Life is funny and I do mean it. The absurdity of it all, yet it’s wonder and beauty.
redshirt
@Prescott Cactus: Isn’t it all the roll of dice?
Good people burn with cancer and others who smoke packs a week live to 90. Who’s to say how any of this is supposed to work out? What expectations should we have?
I don’t know about you, but I have none. Which seems the safest number. Life is random and despite clean living, your time is indeterminate.
Prescott Cactus
@redshirt: So true. We should no expectations and expect the unexpected (what?). Life is almost too random, if that is possible. . .
Married over a dozen years and have had the joy of greeting a doctor bearing good news after 5 breast cancer surgeries and 2 brain tumor removals. When Watergirl told of the empty house her friend George was in, it hit me like a lightning bolt and brought me back to the first night I was home alone. What if. Please get better. It’s soooooo quiet.
We inhabit this whirling ball thinking the ride will never stop.
I now avoid all negative “vortexes” (family and non). I don’t need to be around those folks. I wish them compassion and peace, but I hope they don’t expect a return call.
J R in WV
@redshirt:
Sorry to hear about your Aunt. It sounds like they (finally) did what she asked in her living will.
Again, sorry for your loss!
redshirt
@Prescott Cactus: I wish you the best PC. All we have in this chaos is each other, however briefly.
Life is a gift, a library book on loan. We have to give it back at some point. This is A TRUTH. So what’s the sense in arguing?
J R in WV
@redshirt:
With her living will and the illnesses she had, don’t feel that guilt for very long. She was done as soon as the doctors were done, and that means something.
redshirt
@J R in WV: I think this guilt is natural whenever you – the living – choose to end the life of someone in the Other Place, Not quite Here, Not quite There.
Even if it’s completely justified, completely right, there’s still guilt.
Prescott Cactus
@redshirt: We are actually A-OK, 100% fine. 10+ years on the two benign head holes*** and they have cut her loose from further watching / scans. BC is almost at 8 years (thinking?) and they did everything they could to stop any potential comebacks.
We are in a happy, happy place. Staring that shit down makes you stronger and opens up hidden vistas. Our greatest fear is grey headed pilot of a Buick or Caddy mowing us down in a grocery store parking lot.
***You get a bit of quality time together just before brain surgeries in the prep room. As I was leaving the second time I was better prepared. I had printed out a note that said “Please shave the patient’s head prior to surgery ! ” I left it at the foot of her bed. I was almost out of the room when she discovered it. . . That just came back to me now. . . Thanks !
Prescott Cactus
@redshirt: I think there always is guilt. It’s natural and should go away. Time heals. Rough times are replaced with smooth wonderful memories, slowly.
When you mentioned sepsis. . . The cascade had begun. Your aunt was just waiting for you all to say goodbye.
satby
@redshirt: Remember, we aren’t ending their lives. We’re stopping the things that artificially prolong their lives and letting the natural course of the illness conclude, but with pain relief. And our loved ones can, if they wish, leave to the soft music of a harp instead of the beeping and alarms of machines. No need for guilt about that. That’s an act of love.
J R in WV
@redshirt:
Of course there is, but in your case it should be the natural brief minimum, as she was both terribly ill and explicit in her wishes. ETA: And what Satby said!!
My wife spent 21 days on a vent in MICU with septic shock from pneumonia, it is the biggest and only teaching hospital in the area, which saved her life. She was packed in ice for several days. Came out of the hospital after 59 days, more or less full recovery after a few months at home.
But I got to see a lot of ICU patients come and go, and meet relatives of both types, most let them go when it was time, but some holding on hard.
One young man, his only living relative was his aunt, and he could not let go. She was on life support when we arrived and was still on when we left… Terrible in my book, but I can’t blame him at all.
He was living in a quiet, dark waiting room, off the beaten path and kept dark just so people could bed down there. There were always extra meals in every cart from the kitchens for people with no means at all. It is a great hospital, very compassionate nursing staff, very experienced doctors on staff.
And P. Cactus, thanks for bringing this to the blog. The conversation is always so positive and beneficial! I built a winter camp down east of Tombstone, in the mountains, so the Arizona high desert is familiar. But always back to the WV hills for green spring!
Prescott Cactus
@J R in WV:
I thank you and everybody who stopped by today. Everybody. They community here seems to enjoy these chats. Some are newcomers and some have made visits to all. My memory is like a chain link fence trying to to catch candy wrappers, but I’m beginning to put faces to your names. . . or something like that.
I’m going to ask Satby to ghost comment for me as the compassion flows to the screen in a manner that makes me wish I could communicate as gently.
A list of all previous blogs is at Post 62. For the love of the FSM, my blogs get “locked up” at some point.
I’ll ask Richard if I can share again. Maybe a Saturday or Sunday afternoon, once a month. It’s not a matter of if, but when we need to talk to someone about stuff like this.
Prescott Cactus
An aside.
Gord Downie solo artist and member of the Canadian rock band, The Tragically Hip performed the last show of their current tour. Last night in their hometown of Kingston, Ont. Canada the show was broadcast live to 11.7 million folks.
In May, with a new album ready for release, Gordie revealed he has terminal brain cancer. This is no dress rehearsal, this is our life
Going out with a bang.
Prescott Cactus
Lots of talk of mortality, A 30 minute post show interview with some folks from the CBC radio. Enjoy
Ruckus
@kdaug:
Late coming back to the thread, hope you see this.
I was the person both of my parents directed to handle all the end of life issues for them and to be executor of their wills. They were divorced so it really was up to me. I had to make the call for my dad to be put into hospice because he was a long time sufferer from Alzheimer’s. I found it not to be all that difficult because I’d seen him deteriorate for 20 yrs and his last 5 yrs were a living hell. Mom lived over a decade longer but really only suffered greatly for 2-3 yrs and had been put in a home when she could no longer get by with a live in aide. She went naturally and we didn’t have to do any extraordinary measures.
They both went to lawyers and had papers drawn up and I highly recommend this. They will know your state laws and decisions that can and should be called out. That independent party will take a lot of the heat off of you. My presence was not even required at the lawyers. But both my parents had seen a lot of family deaths with no instructions and that can be messy and was in some cases. There are legal restrictions when things are not spelled out and things that Docs can not do without that as well.
It’s a tough talk to have but I found that having it made it better for both the parents and the kids. They get their wishes, for example mom wanted to be cremated. And also you know exactly what those wishes are and can carry them out. But be warned, some family members may argue against what the person wanted or meant, because they have their own ideas. Without the paperwork you now have an argument, the likes of which you probably have never heard.
Bottom line, have the talk. In the long run it is far better than not.
Ruckus
@Prescott Cactus:
Sorry but I had to laugh a bit at that. I’ve been through this a lot in my life, family members started dying over 55 yrs ago, when I was a much younger boy. Their ages have been from 6 months to 95, so all manner of reasons and ages. All of my parents generation and older are gone, it’s now my generation’s turn at this lights out game. Some of us may have 20 or 30 yrs but not all of us have or will make it that far.
I have a question for you, what do you do if you have no immediate family left, no kids? Who do you get to fight for you and fulfill your wishes or at least sweep up and turn out the lights?
satby
@Ruckus: Ruckus, a very dear friend of mine is also in that position; he has several good friends but one who he was at college with who I believe he will ask to be his power of attorney when that time comes.
As my mom was dying I talked with him about these EOL issues in a roundabout way by talking about making sure I had that all in place, and then suggesting to him he consider getting that all down on paper too, or the second cousins he barely knows will be making all the decisions. That’s when he said he’d ask his friend.
Can you consider someone like that?
Ruckus
@satby:
It’s possible that a cousin could do it. But there is only one in anything like close enough that the distance wouldn’t be a major issue. Major friends, there is one but she is in rather fragile health and while she is actually getting better, given the extent of her health issues and her distance, I couldn’t ask. The VA is actually quite good at this, it’s not like it doesn’t come up on a regular basis. As well I get all my medical there so they need to know anyway. Secondary is, I have no clue what I want. I know a few things I don’t but I’m having enough problems dealing with here and now issues, thinking that far ahead is not seemingly possible. It’s one thing to have to deal with someone else’s EOL issues, dealing with your own is an entirely different kettle of something.
Prescott Cactus
Ruckus, I’m glad you laughed.
In my 20’s I had set up a spreadsheet (pre personal computer days) with names phone numbers and addresses of the guys we hung out with and another group of guys we played softball with in Canaryville. Kept everything up to date when someone went off to school, moved, etc. When the first of my pals was getting married his bride had me Zerox a copy and they used it for invites. Then someone’s parent died. I got a phone call, tried to be as compassionate as possible and was asked if I would let everyone know. I used a phone tree like system. Call one buddy and have him call a couple of others. It happened again. Then again. I became “the Grim Reaper” from those who only heard from me occasionally.
Finally, to your question ! We are in the same position and have done some looking into it and it isn’t cheap if you hire this responsibility out. The answer isn’t easy as we haven’t come up with a good solution, but figure we have a few years before it becomes an important issue. As of know the bride and I are covering each other. In his late 60’s and early 70’s my Dad was still able and capable. He’s mid 80’s and we removed him from any responsibility because it would chew him up.
We have family that is around our age, which is useless. We are hoping a niece or nephew becomes more involved in our lives, and us in theirs, but we are letting that play out as we don’t want to foster a relationship that is based on our desire to lay a bundle of tough decisions on someone.
MUST depart for a meeting. Will reply more in a few hours !
Ruckus
@Prescott Cactus:
I like to laugh, it saves water.
My philosophy, such as it is, is that life is short, living it well, not being a dick, trying to be a nice person is the best of not many rewards. We are born, we live, we die. That’s it. But that part before and after the living is nothing. It’s the part in the middle that we have, well very little control over, but that which we do have is how to live, how to look at life, how not to be too discouraged when it shits on you, how to pick yourself up after that shitting and get on with it. Life is a series of catastrophes, interrupted by a few moments of bliss. You can be bitter at that or not, the choice is yours to make. But sometimes that choice is difficult and as one ages it becomes less choice and more momentum. And it is less fulfilling as that momentum gathers speed. I feel like I’m at the tipping point between choice and momentum from medical issues and it’s way too soon for that. Maybe I’m not actually there yet, but things keep adding up and on. Maybe I’m too close and need to step back and get an alternative view.
Prescott Cactus
@Ruckus:
I love that, but it’s too long for me to get as a tattoo. Damn !
Will discuss EOL issues and folks in a few hours. Please return.
Prescott Cactus
@Ruckus:
@satby:
A cousin or school mate will work fine. There are a couple of important things to consider;
Location. Will your selection be around and available for what may be a couple of weeks or even months of assistance / guidence.
Closeness. How close emotionally are you to your designee ? This is a burden you are dropping on someone’s shoulders.
Back-up. We are very aware that Trains, Planes and Automobiles may be the cause of our own instantaneous demise, but also our designee. Remember plan B & C
Same page. Make sure that they know your desired limits of treatment and your overall philosophy of life / death. This info strengthen their ability to make the tough decision if / when it’s that time.