A place to talk death and dying issues
Comments
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Viktor, the pain you feel now is a validation of the love you had for your Mom. She is blessed to have had you in her life. Cry deep, my friend, let the tears wash away the sadness so good memories can flow in. You are not alone...
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I too am so sorry about your mom Victor. My sympathies to you and everyone who loved her.
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I am sorry for your loss Viktor. What a blessing to know that your Mom knew she was going to ok and wanted you (& any siblings) to be ok too. Truly a mother's heart. God bless you with peace in this grief process.
Shelley, Wasilla Alaska.
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Hi Victor. I am so sorry for your shocking loss! You didn't have any warning. That is so unfair. What a gift that you were able to love your mother through her ordeal. You did everything just right. Please let us know how you are doing.
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Viktor, take comfort, thru your grief and tears, that she did not suffer for weeks on end. She is at peace and free of pain. Cherish your memories. She was a special person and she felt your loving presence.
My deepest condolences.
Lita
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Hello Viktor,
We met only a short time ago, yet your love and care for your mother has moved us deeply.
Soon, it will be time for you to love and grieve your mother's life and death.
Take care of yourself as you enter this new phase of life, Viktor!
And thank you for including us during this transition time.
warmest wishes, Stephanie
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Hello Victor,
Sending you my deepest sympathies to you and your brother.
Gentle hugs,
Madelyn
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Six Steps to Prepare for End-of-Life Care
By Ellen Rand | October 17, 2016
Ellen Rand shares the lessons she's learned about preparing for the death of a loved one.
As a hospice volunteer, I once asked a woman I'd been visiting for several months what she wanted for her upcoming 75th birthday. She was wheelchair-bound, living in a nursing home, and in the last stages of metastatic breast cancer.
"Life," was her answer.
Life. Of course. We all want to live as well and as long as we can. Eventually, though, our bodies betray us and we begin to show the telltale signs of aging. And, as we age, we have to reconsider and accept who we are now, and think seriously about how we want to live throughout our last chapters.
No one wants to think about the prospect of death. But as we lurch into old age, we are faced with the prospect that many of us will need what our medical system does not currently provide: high-quality end-of-life care. It's more than a personal concern; it's a pressing societal issue. Projections are that, by 2030, one-fifth of the population will be 65 and older, compared to 13 percent in 2015, and 9 million people will be over 85.
Currently, our country's end-of-life care is fragmented, costly, and unsustainable. Too much aggressive care is given that is futile and ruinous to people's quality of life. Doctors frequently don't discuss with patients and family what truly matters to them and offer comfort; and those left behind are often wracked by a sense of guilt, haunted by the choices they've made in the heat of the moment without really knowing their loved one's wishes.
Fortunately, there are people, places, and organizations that are taking a serious look at how to improve quality care, and some are making strides in the right direction.
continued at link in title
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After my latest dr appt, I decided to internet shop for a nice urn. I like the Rose Raku brass one. It's never too early when you're St IV, right?
Here's the site...
http://www.inthelighturns.com/brass-urns.html
Amazingly, I feel surprisingly calm about this. Emailed the coordinator at the cemetery where my parents are interred. I'd like my urn planted with them. We'll see if they can do a gravemarker/stone on the ground (it's one of those flat ones) right beneath theirs.
Getting this stuff done ahead of time puts my mind at ease.
Lita
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I want to donate my body to science. I'll get a free cremation and urn that way.
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Funny all my life I wanted to be an organ donor. I loved the "recycle yourself be an organ donor" bumper sticker! Loved it. Always had it on my drivers license. Now that I am filled with cancer I can't be a donor. I can't leave my body to science either with all the ascites. OMG they would cut me open and have a flood in the dissection room.. haha. I just want to be cremated and placed in a white cardboard box like my Grandmother who had breast cancer. Then sprinkled under a old growth Doug Fir tree in the National Forest. Tree food.
It is nice to get it all figured out before you pass. Ask those left over to follow your wishes. Today has been a hard day. Lots of joint and belly pain and screaming fatigue.
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I want to leave my body to Stanford University Med School, that is if I don't develop ascites. I'm looking into urns and cremation as plan B if they can't accept me. The urn I like is only $126. Cremation is the expensive part, and interment.
Lita
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Rosevalley, I feel your pain. Lots of fatigue here too. Can you at least sleep? I can't sleep well either. And that doesn't make it any better.
Hugs,
Lita
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I don't need an urn as I don't want to be buried. My Dad's ashes were put in a soluble container like two paper plates in a saucer formation. We let him sink into his favourite fishing spot.
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barbe58- Love being buried in a favorite fishing spot! How perfect!!
Lita57- I take ambien at night to sleep and thank goodness. Pain meds too, so I have it covered. The fatigue is pretty constant. We have so much to put up with. ugh.
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Well, friends, I haven't been sending regular personal updates to this community for several reasons.
Though I joined bco to meet Rosevalley and participate in this topic, I migrated my personal updates to https://community.breastcancer.org/forum/135/topic..., to interact with bco members without a MBC diagnosis and to keep Forum 8 to MBC folks only.
I got to thinking that this select group is for those who aren't doing as good as all wish. Much of bco seems to agree that a cancer diagnosis is bad, treatment is badder and dying is the baddest of all. Who wants to be the baddest? Okay, maybe I had a leather jacket moment of being the baddest on the block, but that passed years ago.
Also, got to thinking that though this dying business is much harder than I imagined, after nearly a year on hospice I've gained far more than I lost - deepened friendships, new understanding, feeling part of a larger whole.
I try to think of things to rant and rave about here in this community. My body is breaking down and I'm often in discomfort with a wide variety of symptoms. But I'm still well. I sleep far more than wake, yet I enjoy my visits to the other side, looking forward to those inner-world adventures, every bit as much as the out-in-the-world adventures of youth. I'm protected by senses of wonder, awe, interest, engagement, serving others and HUMOR!
There are always other sides to everything, ex. my humor has grown even darker!
So, I can't really come up with a woe is me tale to tell.
My only real worry or fear is that I'm immortal and will be doomed to eternal life like an Anne Rice vampire - cursed to outlive my interest and engagement in life. Even so, what will it take to break the senses that sustain me?
My physical world shrinks and shrinks, but my inner world expands proportionately.
All is well and all manner of things will be well with me.
I've just recently typed up instructions for caring for my home and am now working on instructions on caring for my physical needs when I can no longer leave bed, eat, swallow meds or bathe myself.
My carers are absolutely engaged and trustworthy. We've been through so much together - whether we cared for dying friends together or I've experienced their hands-on care.
Each of us must live and die according to our own inner calling/quest. I hope you find peace along your way, whether you are living the bad life of a cancer diagnosis; the badder life of treatment or the baddest life of all - dying.
Everything bad seems to hold the seeds of something good...at least it has proven so for me!
well wishing for all, Stephanie
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Longtermsurvivor, we want to thank you for your incredible sensitivity and insight into this process. Along with the other amazing people sharing here, your stories have opened up the doors to discussing this topic. Thank you for all sharing so opening- for all of us!
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I don't think we need all woe is me. There's been some good ideas generated here. In some weird way I'm embracing my death with excitement. The next level.
I've always believed that earth is Limbo or Hell- call it what you want but I think there's lessons to be learned and then we move on. Leaving loved ones behind is part of that process.
Part of me will stay here in my kids and grands.
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Amen, Barbe!!! I'm kinda excited, too......but a little sad for my family and friends.
They'll get over it in due time.
Stephanie....I told my DH to roll me off the cliffs of Big Sur when I get to the point where I can't leave the bed and pee by myself anymore
.A DARK sense of humor and a deep faith in God is the only way I can get thru this shiz.
Lita
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I am definitely excited to be free and leave my cancer ridden fleshy raft at the shore. No more draining fluid off every morning, my year long ritual. No more trips to the cancer center and searching out a chemo chair with a view out the window. I am sorry for my dog and cats as I am the feeder and person who opens the door and lets them out and in to the house again, out of the cold. Everyone is old 16, 13, 11 and 8. My old 11 year old dog has arthritis. She's too big for a doggy door. The 16 year old cat has renal failure and hyperthyroid... the 13 year old cat is severely arthritic in her one shoulder and limps. We are all a mess!!! Pitiful to grow old and gimpy. My DH is at work and it's a long day. He seems to do alright and I feel the kids will be alright. Holiday's might be hard for a while.
It's been raining and drizzling all day today; endless grey skies do not help me feel alive. I watch the Fall leaves dance from the grey skies.. and I will be like them. I know that when I cross it will be ok but I don't know if everyone I've left behind here will be ok. Funny... it should be reversed right?
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Lita gets her picture taken with Thomas the Tank Engine at Roaring Camp Narrow Gauge Railroad, Felton, CA - CHECK that off the bucket list.
Oh, we musn't forget about Percy!!
Had a fun day....didn't think about Mr. Cancer too much, and the train ride was very relaxing.
Lita
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Love train rides and on Thomas no less! Lucky you.
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My death is again brought to the forefront of my reality. I got bone scan/CT results today and it showed why I have been having so much pain the last month, in my upper legs and knees. I have trouble putting weight on my hips as I walk because of increased mets to left hip. While my TM's went down a little, the scan results showed significant progression, including lung pleural effusions.
The worst part is my son, 19, wants to move away to a college in Colorado, which is free for Alaska Natives/American Indians and it is such a great opportunity for him. If I tell him about this progression he may decide to stay home. He is very concerned and loving to me. I want the time with him, but don't want to hold him back in life. Especially when it comes to education. What to do?
How do I convince my brain that more progression doesn't mean immediate death? If you could know exactly how much time you have left, would you want to know? I have a trip coming up, just 6 days, but I'm excited to go. Hope to not be in too much pain.
Thanks for listening.
Shelley
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Hugs sweetie. I hear you but have no input. That's a tough one for sure.
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HI Shelley,
I don't have a solution for your dilemma, but I'll relate to it from my prospective as someone who's been medically challenged throughout my lifetime.
I've an inner and, sometimes outer, disjunct between the "common sense" of practical medical advice and my deeper "life sense". The former is about the practical "how to" craft of medical treatments/care focused on the disease process and solutions. My "life sense" is my actual art of living, my own self expression of the universal life force that seeks life, love, complexity and uncertainty through me, an individual.
As patients, we and our medical caregivers focus on the disease and solutions and as human beings, it seems our tasks are in conflict.
A frequent saying from/of hospice is "dying is not a medical event." Their medicine is there to help me achieve my life purpose. Part of my work is to experience myself as a living t csubject rather than an object of the disease process and treatments to correct "what's wrong with me."
At breast cancer.org, we tend to focus on the cancer, seeing it as an obstacle to our planned, projected lives...but it reconfigures our deepest felt self sensing. And we can engage the disease and treatment processes to embrace ourselves as unique complex, complicated and universal, yet ultimately contradictory life expressions.
Part of my loving of this D&D community is knowing that we are often struggling toward wholeness and expression of unique individual self, rather than only the practical aspects of medical approaches to disease processes.
As I get closer and closer to death (weeks? days?) I deeply value the choices I made for life and wonder if I wasted precious energy trying to resist the disease process...but, that very resistance is a learning process and I'm grateful for my lessons in life's school of hard knocks!
The following poem expresses this better than my early morning rambling.
All love and peace for all, Stephanie
xxx
You Start Dying Slowly
You start dying slowly
If you do not travel,
If you do not read,
If you do not listen to the sounds of life,
If you do not appreciate yourself.
You start dying slowly
When you kill your self-esteem;
When you do not let others help you.
You start dying slowly
When you become a slave of your habits,
Walking everyday on the same paths...
If you do not change your routine,
If you do not wear different colours
Or you do not speak to those you don't know.
You start dying slowly
If you avoid feeling passion
And its turbulent emotions;
Those which make your eyes glisten
And your heart beat fast.
You start dying slowly
If you do not change your life when you are not satisfied
With a job, or with your love,
If you do not risk what is safe for the uncertain,
If you do not go after a dream,
If you do not allow yourself,
At least once in your lifetime,
To run away from sensible advice.
~ Pablo Neruda
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This article on the Regrets of the Dying from 2009 was also very helpful to me, as I prefer to avoid rather than recover from regret:
REGRETS OF THE DYING
NOVEMBER 19, 2009 • BRONNIE WARE
http://bronnieware.com/regrets-of-the-dying/
spring
For many years I worked in palliative care. My patients were those who had gone home to die. Some incredibly special times were shared. I was with them for the last three to twelve weeks of their lives.
People grow a lot when they are faced with their own mortality. I learnt never to underestimate someone's capacity for growth. Some changes were phenomenal. Each experienced a variety of emotions, as expected, denial, fear, anger, remorse, more denial and eventually acceptance. Every single patient found their peace before they departed though, every one of them.
When questioned about any regrets they had or anything they would do differently, common themes surfaced again and again. Here are the most common five:
1. I wish I'd had the courage to live a life true to myself, not the life others expected of me.
This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made.
It is very important to try and honour at least some of your dreams along the way. From the moment that you lose your health, it is too late. Health brings a freedom very few realise, until they no longer have it.
2. I wish I didn't work so hard.
This came from every male patient that I nursed. They missed their children's youth and their partner's companionship. Women also spoke of this regret. But as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.
By simplifying your lifestyle and making conscious choices along the way, it is possible to not need the income that you think you do. And by creating more space in your life, you become happier and more open to new opportunities, ones more suited to your new lifestyle.
3. I wish I'd had the courage to express my feelings.
Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result.
We cannot control the reactions of others. However, although people may initially react when you change the way you are by speaking honestly, in the end it raises the relationship to a whole new and healthier level. Either that or it releases the unhealthy relationship from your life. Either way, you win.
4. I wish I had stayed in touch with my friends.
Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.
It is common for anyone in a busy lifestyle to let friendships slip. But when you are faced with your approaching death, the physical details of life fall away. People do want to get their financial affairs in order if possible. But it is not money or status that holds the true importance for them. They want to get things in order more for the benefit of those they love. Usually though, they are too ill and weary to ever manage this task. It all comes down to love and relationships in the end. That is all that remains in the final weeks, love and relationships.
5. I wish that I had let myself be happier.
This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called 'comfort' of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content. When deep within, they longed to laugh properly and have silliness in their life again.
When you are on your deathbed, what others think of you is a long way from your mind. How wonderful to be able to let go and smile again, long before you are dying.
Life is a choice. It is YOUR life. Choose consciously, choose wisely, choose honestly. Choose happiness.
~~~~~~~~~~~~~
Based around this article, Bronnie has released a full length book titled The Top Five Regrets of the Dying – A Life Transformed by the Dearly Departing. It is a memoir of her own life and how it was transformed through the regrets of the dying people she cared for. This inspiring memoir is available internationally through Hay House, with translations in 27 languages.
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That's a great poem Stephanie. Shelley I feel your pain. My DD2 won't take a semester abroad because my health is so sketchy and uncertain. I know she would love to go and I want her too but I would miss her desperately. So she stays. Our time together is precious and limited. Lucky for us she is in a college an hour away. I have no advice. ((hugs))
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Reimagining hospice care — for the living
ARMELLA LEUNG FOR STAT
OCTOBER 26, 2016
Of the 23 years Doris Ann Price has battled metastatic breast cancer, this year has been particularly hard. She'd almost grown accustomed to the ebb and flow of remission and relapse when, this spring, her cancer invaded her neck so deeply that she lost the ability to swallow food.
A few weeks later, her oncologist told her that he'd run out of treatment options. When Price, 69, recalled the moment recently from her bed at a rehabilitation facility in Lincoln, Mass., her nearly constant smile curled into disgust.
"He said I'm hospice-appropriate," she whispered.
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Hospice care includes end-of-life support from nurses, home-health aids, and others for people who are believed to have fewer than six months to live and who reject curative treatments. The care usually extends until death, and is free for people on Medicare.
Price grudgingly accepts her six-month prognosis, but she still wants to pursue potential cures.
With the current slate of newfangled cancer drugs, few could blame her.
In almost every area of oncology, and on an almost monthly basis, researchers unearth new possibilities for 11th-hour remissions. For the fraction of drugs that work, the resulting remissions are often short-lived, but some patients have used a succession of new drugs to survive for years.
Price hopes to follow that script, yet she also understands how desperate her situation has grown, and how much she needs hospice-like care. She requires nearly full-time support, but she has no one to accompany her when her husband, Aaron, works. (Her spot at a rehabilitation center was a temporary measure, while Aaron readied their former home in North Carolina for sale.)
In theory, Price — and patients like her — now have an option.
As of earlier this year, participants in Medicare's Care Choices pilot program can receive home-hospice care while also pursuing curative treatments, as long as they have cancer, chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF), or HIV, and as long as they are admitted to one of the nation's 140 participating hospice programs.
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Stephanie....love the poem. I should have put some of that into practice years ago.
Shelley....(((Hugs))) Don't know what to say. My DD is about an hour away at univ, and she comes home to do laundry every other weekend. Hard to know what to do. I shed tears for you. This effin' disease!!!! It has robbed us of so much. I alternate between acceptance and anticipatory grief: grief for my family and friends.
Lita
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