Knowing what really matters to you is worth considering. How important is being able to talk with people, engaging in daily activities, physical comfort or general alertness to you? What comes to mind when you think about the burden of care on others, being at home, or not being there?
How much distress is it worth in order to live another month? And what medical procedures are not worth enduring? From your perspective, what is the best way for a person to die, and how important is it to you to be in control of how you live and how you die? Whose opinion should be sought in making choices about the care received when an illness has progressed to an advanced stage? If, as caregivers, we haven't had the necessary conversations—whether due to reluctance, dementia, or a crisis—we might have to think about the issues raised above without a lot of information.
All of these questions may sound very difficult to discuss now, when the time for decisions is still in the future. However, they are harder to discuss when someone is really sick, emotions are high, and decisions must be made quickly. Chronic pain, frailty, and cognitive decline may take away the ability to discuss complicated issues. The earlier everyone sits down to talk, the better. The best way to start is simply to start.
Arrange a time to talk. You may say you want to talk about things that might happen in the future, in case of serious illness. Have some ideas to bring up. Be prepared to listen a lot, and to ask questions. Do your best not to criticize what the other person says. If you know the other person will not want to talk much about this topic, have just one or two important things to say or to ask about.
Be prepared to break off the conversation, and to come back to it another time. Write down the important things people say. Eventually, you can use your notes to prepare a statement of wishes and make this statement part of an "advance directive" about health care decisions, whether or not the formal document has been completed. Many families find it is easier to have such a critical discussion with the presence and guidance of an impartial facilitator. Some social workers, case managers, or faith-leaders are skilled in providing this support see added resources. Asking for a professional to assist with the discussion may relieve individual family members from the burden of having to take on this role.
It is also important to talk with your physician about treatment choices. Visit www. This form is a set of medical orders, similar to the DNR allow natural death to occur.
bluedanube | To Gently Leave This Life
Decisions to provide or withhold life support are based on personal values, beliefs and consideration for what a person might have wanted. Such decisions are painful. Family members should give themselves ample time to cope with these life and death decisions and to process feelings of doubt, guilt or blame that may surface.
POLST is not for everyone. For these patients, their current health status indicates the need for standing medical orders. For healthy individuals, an Advance Directive is an appropriate tool for making future end-of-life care wishes known to loved ones see fact sheet on Advanced Health Care Directives. Professionals in medical offices, hospitals, community-based services, and hospice teams are skilled at assisting individuals or family groups at working with these very normal, but painful, emotions. Is it time to let go? Or time to give a loved one permission to die?
There are three ways to help decide. First, look at the medical situation. Has the illness really reached its final stages? When it has, the body is usually moving on its own toward dying, with strength declining, appetite poor, and often the mind becoming sleepier and more confused. Treatments are no longer working as well as before, and everyday activities are becoming more and more burdensome. In a sense, life is disappearing. Consult with your physician; ask for clarity on the prognosis, or likely course of the illness or stages of dying.
Closer to death, there may be dramatic changes in the dying person's moods, behaviors, desire to take food or water, and capacity to verbalize wishes. All of this may be a normal part of his or her letting go.
At this time, safety and comfort care are of utmost concern. Second, talk with people you trust. Discuss the situation with the family members and friends who seem to be able to see things as they are. You might also talk with people who are not personally involved. Most importantly, consider what the dying person has expressed or you know to be his or her desires. Third, listen to your heart.
Try to see beyond your fears and wishes, to what love and caring are saying to you. What is really best for the one who is dying, and for the others around? Given that death is unavoidable, what is the kindest thing to do? It might be holding on. It might be letting go. Family Caregiver Alliance FCA seeks to improve the quality of life for caregivers through education, services, research and advocacy. Through its National Center on Caregiving, FCA offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers.
For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer's disease, stroke, head injury, Parkinson's and other debilitating disorders that strike adults. National Hospice and Palliative Care Organization www. Hospice Foundation of America www. Five Wishes Aging with Dignity www. Prepared by Family Caregiver Alliance. All Rights Reserved. Learn more. Skip to main content. Search form Search. You are here Home.
Order this publication. Introduction Our culture tells us that we should fight hard against age, illness, and death: "Do not go gentle into that good night," Dylan Thomas wrote. Holding On Humans have an instinctive desire to go on living. Chronic Illness So far, this fact sheet has been about the very end of life. Planning Ahead Planning ahead means thinking about what is important, and what is not. When we think about the last part of our own or someone else's life, consider these questions: What makes life worth living? What would make life definitely not worth living? What might at first seem like too much to put up with, but then might seem manageable after getting used to the situation and learning how to deal with it?
If I knew life was coming to an end, what would be comforting and make dying feel safe? What, in that situation, would I most want to avoid? Some questions that might help in thinking about this are: What has that person actually told me? How can I find out for sure about her or his wishes? Turning now to myself as the caregiver, what would be important to me?
What would I especially like to know about that person's wishes?
By the time you read this, I’ll be dead
Landman believes this may be because the then minister of health, Dr Manto Tshabalala-Msimang , regarded the issue as something of a middle-class problem. Perhaps it is. Perhaps mothers do die gently, cared for by their daughters, without worrying about indignity and fuss. But they don't die quickly, or without pain.
Mum had always talked frankly to us about death. Now, with her hands becoming increasingly unsteady and fits of dizziness coming unexpectedly, she was finding the colostomy bag she'd had since her surgery in difficult and humiliating to deal with. She felt that her body was wearing out and, more frighteningly, her head felt heavy and fuzzy. Over the course of a long phone call, Vicky told me that Mum had made a decision. She was going to stop taking the medication that was checking the spread of her cancer, and stop eating and drinking, too.
It was the sort of family reunion Mum loved, and in many ways it was like all the other happy times we have spent together, filled with love and laughter. We planned meals together, cooked in Mum and Dad's tiny kitchen, ate and drank together, just as we've always done on family holidays, over Christmases and at other celebrations — only this time it was Mum's life we were celebrating, while she went through the process of dying. I'd been afraid of seeing Mum since this latest illness.
I was expecting to find her diminished, somehow less herself. But I was amazed by how well she seemed. Vicky had cropped her hair so that she wouldn't have to experience it falling out, and Mum, with the pride in her looks that beautiful women never lose, was obviously upset by her appearance. But to me she looked lovely. She shone with happiness at having all her daughters there with her and Dad. She was full of her usual curiosity and humour. She didn't look like someone who was ready to die, and this frightened me — what if somehow stopping eating and drinking didn't work, and Mum lingered on in pain?
What if the process didn't take a matter of days but a matter of weeks? Part of me knew how much she would hate to be thwarted in her intent; part of me longed to keep her with us for longer, and hoped that, even now, some sort of miracle might happen.
Being with someone when they die
Although Mum was unable to walk unsupported and her hands were very shaky, she was alert and lucid, chatting to us as she always had. Her appetite was small, but she was still enjoying food: pizza with olives and anchovies, strong cheddar cheese, the fruit cake Juliet had baked and been saving for Mum's 80th birthday. Juliet's cake was the last thing Mum ate, on Wednesday 28 March, when her brother visited to say goodbye, and she had a last chat with her sister in the UK.
We were all in tears that morning, except for Mum, who stayed calm and cheerful. I didn't see Mum leave her home for the last time. It's fortunate that Mum was surrounded by people who supported her decision. The management of the nursing home hold the same view.
Her GP gave them written instructions explaining Mum's decision and outlining the care she would need. The five of us sisters rallied behind Mum and Dad; we were a team. As I write this, it's difficult to isolate my own feelings and experiences from those of my sisters — who said what, who made decisions, who cried. This isn't always the case.
It was only after intervention by the couple's family, the local press and medical and legal experts that the attempt was stopped. We laughed a lot over the next few days. We teased Juliet about developing late-onset colour-blindness when she kept putting bottles of red wine in the fridge, while the white stayed warm on the kitchen counter. Jassy and I speculated macabrely about what would happen if the nurses forgot to take down the "Nil by Mouth" sign over Mum's bed after she died — we imagined some poor old dear being moved into her cubicle and waving plaintively as the tea trolley rattled unheedingly past.
Emma and Juliet still haven't let me forget the nightmare mile walk I dragged them on around the suburbs of Johannesburg, possibly the world's least pedestrian-friendly city. One night after dinner, Emma and Juliet went to visit Mum, and the three of them chatted and reminisced until eventually my sisters were asked to leave — their laughter was keeping the other old ladies awake.
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In the midst of Mum's death, our normal lives went on. But she was too drowsy, although she loved being read to.
- The New Paltz Outlaws;
- Der Bullen Code (German Edition).
- Marthas Wig!
We planned each day as it came: who would be spending time with Mum, and when; who would cook, and what, and for how many. Often, it felt just as if she was there with us, as she always had been when the family was together. There were hard parts, too. She wasn't the only one. Being a spectator at the death of someone you love is bitterly hard. We expect medical science to intervene to relieve suffering, and to a great extent it does.
But the journey is a lonely one. Even surrounded by the people who loved her most, and professionals who gave her the very best palliative care, Mum fought her battle for death alone. How much more lonely, and how much more frightening, the process must be for people who aren't supported by their family, or aren't able to communicate their wishes, I can only imagine. She also enjoyed having her hands massaged with her favourite body lotion as her skin began to get dryer, and the scent greeted us when we came into the ward to see her. He spent a lot of time at Mum's bedside, sitting with her while she slept.
On Sunday, Mum began to slip away. In the morning she was still alert, asking for ice to suck and chatting to us almost normally, but by the evening she was no longer able to speak easily. I felt embarrassed by my tears in the face of Mum's courage — absurdly, I didn't want to worry her. There wasn't anything else to say. That was the last time she spoke. The morphine patches she had been prescribed relieved any symptoms her advancing cancer might have caused, and the sedatives kept her calm and drowsy. However, it's not known whether such palliative care actually removes the dying person's experience of hunger and thirst, even once they have lost consciousness.
A paper published in the Journal of Medical Ethics in concluded that "continuous deep sedation may blunt the wakefulness component of human consciousness without eradicating internal affective awareness of thirst and hunger".