five regrets of the dying by bronnie ware

November 25, 2012 at 9:52 pm (being remembered, bronnie ware, death with dignity, five regrets of dying, living with dying, the dr. says) (, , , , , , , )

Bronnie Ware is an Australian nurse who spent several years working in palliative care, caring for patients in the last 12 weeks of their lives. She recorded their dying epiphanies in a blog called Inspiration and Chai, which gathered so much attention that she put her observations into a book called The Top Five Regrets of the Dying.

There was no mention of more sex or bungee jumps. A palliative nurse who has counselled the dying in their last days has revealed the most common regrets we have at the end of our lives. And among the top, from men in particular, is ‘I wish I hadn’t worked so hard’.

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 to 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 is 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.

What’s your greatest regret so far, and what will you set out to achieve or change before you die?

 

 

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instead I am buying curtains

April 26, 2012 at 2:01 pm (Uncategorized) (, , , , , , , , )

there is quite a history as there always is between mother’s and daughter’s.  as my youngest sister talks about our mother and we have agreed to her experience being different from mine.  that does not make mine less true than hers and there has never been any resentment on my part that there is this difference.  there were in fact times that my only coping mechanism was to think someday she would be sorry. the mother not the sister.  it never really came to pass although it was close once i think.  there was a letter that sort of started with how she may have done some things then took a sharp right turn to somehow she is the wronged party as she has been put in the position to admit to such wrong doing. it was laughable. and so i did laugh. somehow she did it again, that never really admitting to what was done and turning it to poor me look at what you expect from me.  first let’s be clear there was never a request for such admission as it was as expected to be and was most insincere.  the younger sister hasn’t been the one to express feelings of regret, remorse or such emotions to my knowledge.  this is a hard time for her and yet it would not seem that way to someone who does not know her.  the middle sister cries a good game but is not the one prone to these sentiments either.  the odd thing is they would most likely see me this way and themselves differently.  not that the different opinions would make any of our truths less so.  it would not surprise me to know that we have all cried over this woman for different reasons.  A, had from the outside a great childhood. M, would say that she was abused from day one and would not be far from the truth, yet she gave a good deal of abuse in return. 

there is nothing here of bitterness or recrimination. she is who she is and knowing her biggest deepest fear is to die alone gives me such sympathy, empathy and insight.  she is after all just human like the rest of us.  she is frail and vulnerable.  this is how it ends for so many of us.  we fear this and yet we create it.  one daughter 2 hours away, one 2,000 miles away and the other so full of hate she can not be reached at all even in the next room.  yet here we are, one daughter drives the 2 hours, the other calls and sends the money needed for her comfort, the third is forced to share a home with her and see her own son love this woman without limits.  he has grown to be a man of great kindness who was not treated with such by his mother or grandmother.  the grandmother used him for her own end and yet in his innocence he does not know this.  he is considered by our society to be the damaged and less than. he is considered by his aunt and uncle who live 2,000 miles away, admirable.

the mother has decided to forgo dialysis.  she is receiving the benefit of hospice care. the nephew is being guided by professionals who do not know or care what kind of woman she has been. the aunt and uncle speak to him, encourage him, let him know that they know how difficult this must be.  the aunt cries when she is alone and buys curtains for the mother’s room at the nephew’s home.  it is all i can do for her now. 

what i hope to do for others is bring some understanding to what can be expected if you or someone you love is dying from congestive heart failure and kidney failure.  here is some information I have put together for your convenience.

 Death from kidney failure is generally considered a gentle death. In fact, many physicians and nurses would choose to die of kidney disease rather than any other illness. Most symptoms of kidney failure can be easily managed or suppressed and pain is rarely a problem.

Physical Symptoms of Kidney Failure

The kidneys filter waste from the bloodstream and regulate the amount of water contained within the blood. When the kidneys fail to do their job, the waste accumulates in the body. This build up of waste may cause several symptoms.

Energy Level: The first thing you may notice is a loss of energy. You may become more sleepy or lethargic. Your sleeping patterns may change; you might sleep more during the day or have difficulty sleeping at night. As things progress, you will sleep more and more and eventually lose consciousness altogether.

Mental Changes: You might notice mild confusion early on that may progress to disorientation, anxiety, or delirium. Any discomfort from these mental changes can usually be easily managed with gentle reassurance from loved ones and health care professionals and the use of medications, if needed.

Muscle Changes: As minerals build up in the blood, you may notice muscle twitching, tremors, or even seizures. Medications can be given to prevent seizures and treat them if they occur. Gentle massage can relieve discomfort caused by muscle twitching or spasms.

Skin Changes: A build up of a chemical called urea in the blood may cause your skin to itch. You may even develop a fine white powder on your skin.

Appetite and Weight Changes: As with any serious illness, your appetite will decrease and may cease altogether. There is no need to force yourself to eat if your body doesn’t feel like it. Doing so may only make you feel worse. You may lose weight as your appetite wanes or you might gain weight as your body retains extra fluid. If you are not producing much urine but still drinking fluids, you might notice your feet, legs, abdomen, and other areas of your body swell with excess fluid.

Changes in Urination: You may pass little or no urine at all. If this is the case for you, limiting the amount of fluid you drink may improve your comfort by decreasing the amount of excess fluid in your body. As mentioned above, excess fluid will lead to swelling of the feet, legs, abdomen, and other areas of the body. The fluid may congest the lungs, making breathing difficult, and strain the heart. If you are not producing any urine, death will usually occur quite soon, usually within one to two weeks. If, however, you are still producing some urine, you could live much longer.

Breathing Changes: The build up of acids in the blood may cause changes in breathing. You may breathe faster and more shallow. This breathing is generally not uncomfortable. If fluid has accumulated in the lungs, you may have shortness of breath,

Death is rarely a welcome guest but death from kidney failure may be the most gentle and comfortable death any of us could ask for. If you have further questions about what to expect during your particular illness, speak with your kidney specialist or hospice physician.

add to this vomiting in the morning. not sure why this one is not at the top of the list for early symptoms of kidney failure.  for months prior to my failure each morning no matter how I changed my routine, i would throw up.  finally i saw it somewhere, but not until after i had been in intensive care with the kidney failure.

please remember I do not give medical advise here.  anyone who has experienced symptoms and has questions should contact your physician.  never substitute any advise here for what you think is the right thing for you or for advise given by a healthcare professional.

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the queen is dying

April 21, 2012 at 1:03 pm (Uncategorized) (, , , , , , , )

for many years the mother has been called the queen mother.  it was a bit of a joke and kind of stuck.  strange to think that she was diagnosed with congestive heart failure after me.  now she is in the final stages and there is much yet nothing to do.  it has been arranged for her to move in with my nephew.  he is such a good and kind spirit.  he has always been willing to do anything for her.  not many of us have someone who devoted. 

the dr says she is in kidney failure and though he is going to give her some new med to see if it will help he did not hold out any real hope to her.  she has decided against dialysis which i agree completely with.  it is not something i will be doing either.  strange to have so many of the same symptoms and yet i seem a bit behind the curve from her.  i have been on stronger diuretics for months and they are not working that well.  the fluid retention becomes confining and uncomfortable.  the swelling in the feet, ankles, hands are what most people think of but this goes to a point way beyond those.  all the joints swell so you can’t bend your legs, my abdomen becomes so swollen I look 9 months pregnant and have the same problems getting out of a chair or sitting position.  the feet swell so badly it hurts to walk.  it is only going to get worse.

i can not talk about her without thinking of my own situation.  i can not think about her without thinking about my own situation.  is that selfish? it is not meant to be.  it is like being beside a car that is out of control and you are making all the same moves.  you can’t help but wonder if you are going to come to the same end as the other car. 

my sister Angie is sometimes seen as a party girl or flighty.  she can come across that way.  indeed i have reminded the queen mother how her daughter has a very responsible job and has made a good life for herself.  in times of the rubber hitting the road she is firmly on the road.  she drove to Sacramento from san francisco prepared to handle anything that comes her way.  she is organized and has a plan.  we were stunned to hear the dr had not prescribed pain medication, hospice had not been notified, and the papers for a hospital bed have not been signed.  when i spoke to our middle sister we got the ball rolling for mother to be at my nephews ASAP.  for some reason that was on the calendar for may.  my nephew was glad to have the encouragement and backing needed to get her moved.

what is a bit sad is when i speak to her she can not remember what has been said.  “mom you are not to worry about anything, Angie is coming tonight.”  mom: what am I going to do with all my stuff?  how will I get it in storage?  reminding her what was just said she confides she can not remember much at all and not for very long. this worries her and is embarrassing.  i simply have her write down what we are saying and read it back to me.  ok now she can read this as she needs to, if she remembers to.

Angie is on the case this morning and i feel sorry for anyone who gets in her way.  she can be a real ball of fire!  we are doing what we can from Georgia. called the funeral home and are setting those details up.  really the only thing i can do is be moral support and a sounding board for them that are “boots on the ground.”

heather just called and once again my weakness comes when people are kind to me.  heather and Kristen are so dear to me.  it has been my great fortune in life to have them as family.  all of this sort of reminds me that i want to get those videos done. it is important to me to pass those on. 

feeling a bit overwhelmed, tired and having angina pain.  i want very much to be as much support to my sister as possible and that means putting aside my own looming health problems. 

hope for today is that she will not suffer any more than she can bear. hope for today is she is prepared in her mind and heart to move on to the next adventure.  hope for today is that my sister knows how much she is loved and admired for her ability to do what needs to be done and gauge her own needs.  hope for today is to treasure each moment today.

just got a call from angie and here is the beauty of hospice! she called them as planned last night and they are going to take care of everything.  she was trying to call drs. and get the bed along with a dozen other things. after talking to the woman at hospice (an actual person answered the phone) she can put that stuff aside and concentrate on spending time with her mother.  hospice is going to call her dr and get the order for hospice care, they are going to arrange for the bed, they are going to make sure she has pain meds and they are going to make sure her wish to not die in the hospital is honored!!  thank you hospice.  thank you hospice.  angie is going to take mother to get her hair washed, then for a drive and anything else she feels up to.  the move will take place tomorrow and now it is my turn.  i have been asked to intervene as the “oldest” sister.  this kind of situation brings out the best and worst in people.  unfortunately it is bringing out the worst of middle sister.  i will make the call, i am the oldest and beyond that it is the least i can do.  angie and i will get through this, with help from loved ones, friends and now hospice.

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Respite care, Palliative care … a whole lot of caring but for who?

April 17, 2012 at 4:30 pm (Uncategorized) (, , , , , )

 Respite care is the term used to refer to the act of leaving a loved one with special needs in the temporary care of another party.” this is not what I think of when I think of respite care.  when reading this definition the first thing that came to mind was, if someone isn’t already feeling guilty this would do it.  words like “act of leaving” and “special needs” are real guilt inducers.  in my mind this is not what a caregiver needs to think in regard to caring for themselves.  it is a bit like the old well rehearsed safety talk given by flight attendants, put your own oxygen on before worrying about your child.  this goes against what most of us would think, when given a second thought it becomes more clear that we must care for ourselves first.

are we so afraid we will not be taken care of that we start as young as possible teaching selfishness  is a sin?  in the past years there have even been therapies to advocate being selfish.  some would have us believe we have no responsibility for the words or actions that cause others to “feel” a certain way.  very popular for a period of time was the, if someone gets their feelings hurt it is their choice, not your problem.  that one fell flat for me, there are enough people who already think little of others feelings.  if someone is “leaving” a loved one doesn’t that imply some negative agenda on the part of the person leaving?  balance in all things brings real peace.

who actually gets to take advantage of respite care? not the person with the terminally ill loved one, surely not them.  if they leave and their loved one died, how would that look?  how would the person who decided to use respite care handle the guilt?  would they feel guilty?  most would I fear.  how about the loved one with a long-term yet terminal illness?  can the caregiver leave them?  if they are at home and seem to be doing well, why not?  there is always that what if game though isn’t there?  in my own home this is played.  it is okay to go for bridge on Thurs. for 41/2 hrs, it is okay once a month for poker another 4-5 hrs.  it is not okay to go away overnight.  it has been 2 yrs since the defib implant and i don’t think there has been an overnight away.  in July the family from the Bahamas may come up to Charleston.  if possible we will both go, if not it may be a struggle.  we do not get to see them with the exception of this once a year visit.  while it would bring me joy to see them it may not be the best for me.  will he go?  hoping that he will and wondering what bargain can be struck to make it palatable.  once there, no doubt much fun will be had and he will be fine. 

when in the icu i wanted to say stay home today.  for today take care of yourself.  fathers day came during that time.  heather came up and they went to brunch, then to visit me.  it was so wonderful to know that he had that time.  as the person in the bed your world is just waiting, you are waiting for someone to come in to your small world of 4 walls and tell you of the outside.  what did you do today?  tell me of the outside world.  in here there are no mirrors, no window to look out of. even when moved to a regular unit my view was of a rooftop.  it is easy to become needy and dependent on that thread from the outside.  it makes your time go easy, much like a prisoner i imagine.  the food is certainly no better:)  as the “sick” one is it okay to be selfish?  hey, we are dying here! how tiresome that is. 

if you have a loved one who is in the hospital, nursing home, or hospice, as a caregiver you still have needs.  if your loved one could step back from this and remember a time when they were in your shoes, they would want to release you from the curse of feeling selfish.  we want you to enjoy life, we want to be able to give you that.  we can give so little at this point.  let us give you this.  take a day or two, even three or four, leave yourself in temporary care.  don’t take care of anyone else for those days. 

it seems like respite care is a great idea.  it is an idea that needs to be embraced.  we know that you love us and we may be able to do little for you now due to our circumstance.  talk to us. let us know what you need.  let us remember that we can be there for you still.

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to do list- hair, funeral home and cat food

March 1, 2012 at 4:30 pm (defibrillator, military funeral) (, , , )

to do lists have been my salvation for many years.  usually there are so many things to get done or want to do that if I don’t write them down and prioritize, they wake me in the middle of the night.  even though I have a great memory it has been a fear that I will forget something that wait.  even now with little to do other than get up I find a way to have a list.  there always seems to be something that I would like to get done and though now the list is more of a suggestion than a have to it gets made and gives me something to focus on.

monday the list was get your hair colored, go to the funeral home and make sure to pick up some cat food.  to an outsider that might seem like an odd list as no one item has more importance than the others.  well actually there is one more important, getting my hair colored.  no way am I walking around with those roots:)  over the years I have considered letting it go grey, I am old enough to be grey now so it would be perfectly natural.  it is a gauge for me in some ways. if I ever stop caring about my roots or think I am too tired to take care of it then I am in trouble.  as I told my hairstylist there is no way I am dying with grey roots. 

after checking off the hair appt we are on to the funeral home.  this is my idea and chris trusts me that it is wise for him to go.  the idea is to make him as comfortable as possible.  let him meet the guy who will be handling things.  this way when the time comes he will not feel so disconnected from the people who can help him manuever through the process.  we sat down with dave and told him what we wanted.  there was that moment of awkwardness when he thanked me for my service.  his father had served in the military and he was a self-proclaimed army brat.  he gets the forms and starts filling them out.  I do not want the super-deluxe casket that is just going to be burned with me,  no I am opting for the nice cardboard box. much more practical I say to him, my eyes are meeting his but my attention is on my love and how he is doing.  a few jokes and soon chris is asking if I want the one with the sunroof.  then there is talk of leather upholstery but it makes me hot and it is going to be hot enough I say.  david is not sure what to think, I see it on his face, he is not my concern, chris is.  david is fine with the basics, once he knows I am entitled to more than the 200 or 3oo most v.a. customers get he is telling us all about the different options available.  we had originally decided not to have any military honors when the time comes.  david made some points to us that i now feel were a gift.  as the son of a veteran he talked about what an experience it had been to attend his fathers funeral with the honors.  chris who had been in agreement with me now says maybe we should for our grandchildren and my son-in-law. maybe they would find that meaningful.  david had been ready to be a one man funeral until that point.  he actually said if we would let him he would take part of my ashes and intern them at the national cemetery. he showed us pics and it is really beautiful.  rolling hills, trees and headstones that look like Arlington. the “niches” are behind very respectful and simple plaques.  my answer was that chris should do as he feels with my remains, the service or memorial is for him and my family, it makes no difference to me what goes on as long as I am cremated. it was interesting to watch as chris started to think more about what others in the family might want.

we talked about not wanting to call 911 at the time of death and he agreed.  at first he thought we could just call the coroner’s office but after doing some checking he came back and said we will have to call 911 unless I am signed up with hospice.  this seems ridiculous to me but there you have it.  the law used to be if someone was under a drs care for a terminal illness the ambulance and all that entails could be skipped.  so now I will talk to my dr about what can be done.  hospice for me is a waste of resources.  it is still my intention to go at home not in a hospital or hospice if at all possible. 

have to go take care of my last list item for today, go to the bank.  so the new list will be see the dr., make an appt with the cardiologist to disconnect the defib, buy a new tablecloth and check when we can visit with family.  lot’s to do and naps to take. better check on cat food.

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Palliative Care also known as end of life care

November 17, 2011 at 3:46 pm (end stage, family, medical language, medical terminology) (, , , , , )

as I tell my husband I have been reading the brochure on palliative care I can tell by the look on his face he is not at all sure what that means.  it occurred to me that many will see the brochure and have no idea what it is about and lose out on information that could really make their life and that of their terminally ill loved one tremendously better.

Palliative care is simply put, end of life care. not just for the dying patient but for the family/caregivers also.  why would caregivers need this service? if you have seen someone at the end of their rope, stressed out and feeling guilty about feeling stressed out then you know why they need this service.  it is without a doubt an invaluable service for the person passing on, it is also invaluable to the caregivers.  so many times out of love or guilt a family member takes on the staggering task of meeting the needs of the ill loved one.  they will deny themselves the very care they are providing to their loved one. 

since I have been told on more than one occasion that being in end stage is here, Chris and I have discussed what decisions may have to be made now rather than wait until we are in the middle of a health crisis. knowing ahead of time that we are in agreement of the steps we will and will not take relieves a burden before it gets here.  of course I am hoping to just go quietly in my sleep, no fuss.  the reality may be something quite different. better to be prepared and in agreement now than trying to work through all the emotion and decision making in the heat of the moment.

to know that someone could come in to our home and give Chris the time to go play bridge, or run errands is a comfort to me.  we are not there yet but I want to know what my options are.  this brings me back to the brochure. it troubles me that this nice medical term is being used to make people feel better about reading it while the very use of this term may prevent an average consumer from picking it up and using it.  I am not suggesting that the medical industry talk down to patients, just make sure we know what you are talking about. for me it helps to have the medical background and for many others who are familiar with the term that is great for you.  if life me there are certain gaps in your expertise you will know what I mean. 

it is my intention to write more about this in the coming days and I hope it will be useful and/or interesting to anyone passing through.  palliative care has been around for a while and seems to be more accessible than in the past. I encourage you to get all information available and be informed of your options and the support available to you.

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