People with life limiting illnesses have an incredible ability to teach us how to live. When people are faced with their own mortality, it just makes sense that their priority’s change. There’s no more “someday” for their goals and dreams they want to fulfill, “someday” becomes “today”. Not only does the time line change but so does the list of goals and dreams. All of a sudden, some of those things that were so important, just don’t matter anymore.
So, what is it that REALLY matters to people at the end of life? What lessons are available to those of us who want to live without regrets? I would like to share 5 life lessons I have learned throughout the 25 plus years of working with end of life patients:
This week’s blog looks at: Life lesson #1: Adjust your priorities now
I’ve never had a dying patient tell me that they wished they had worked more hours for company X, or that they wish they had more money in their bank account. Not once has a patient said, “If only I could have afforded a house in Florida”. What I have heard patients say is that they wished they had taken more time with their family, told them how they felt, didn’t hold a grudge or asked for forgiveness. I’ve also heard patients say they wish they hadn’t been so scared to live how they really wanted to.
Hearing the same things over and over again, from men and women of all different ages, race, and socioeconomic statuses made me personally evaluate my priorities. My number one priority is always my family, isn’t it for most people? When I delved deeper in my priorities I realized however, that my actions didn’t always mirror my beliefs. That was when I realized that my beliefs and values were not always the same as my priorities. I worked long hours, would take work calls while watching a movie with my kids, or allow the kids to eat by the tv so I could finish up one more project all in the name of trying to “better my family’s lives”. The reality was that my actions made a bold statement, work was more important than my family. As a single parent I was driven by the fear there was no one but myself to support my children. What I realized was that if I died tomorrow, I would have regretted the time I missed with my children. In other words, the people that mattered the most to me, weren’t getting the best of me.
I hope you take a moment to really look at your priorities. Do they match with what you value the most? If not, take the time to make some adjustments. Don’t wait until it’s too late to make what matters to you, really matter.
It will make all the difference….I PROMISE!
The one thing I know for sure is that Advocacy is the key to helping your loved one achieve the death they truly want!!!
What do I mean by that? Very simply, advocating for your loved one, creates a death positive environment.
Your loved ones will face so many hurdles and will question themselves. The goals they went into this journey with will be tested over and over. If you think about it, how can they not? We live in a society that believes death can be stopped. We fight it at every turn, so if someone embraces death…we have to make them wrong AND change their minds.
Let me ask you this….How do you want to die?
I would guess that you want to die painlessly, at home, surrounded by your loved ones. That’s the goal just about everyone has. So why do people at the end of their life change their mind? Why do they go to the hospital and endure painful aggressive treatments? Why do most people NOT die at home when that’s all they wanted to begin with?
Because the pressure put on them… gets to them.
When your friends or family member realizes they aren’t alone, that their choice isn’t wrong, or giving up, being uncaring, or even evil…they begin to stand firm.
When you become empowered to fight for your loved one, you make sure your loved one’s plan doesn’t come undone. YOU DO MAKE A DIFFERENCE!!!
So many of you have reached out and ask how to talk to someone who’s dying. You want to know the dos and don’ts when you communicate with friends and loved ones because you’re afraid you’ll make a mistake. Being present is the biggest DO. After that, here are a few things to consider…
- Make it about you. It is not about your comfort or your experiences.
- Correct them, instead just listen and go with their thoughts and feelings. There is meaning in everything they say. When you negate the true feelings of the dying person, you do not allow them to express themselves.
- Talk low or whisper when you talk. Be normal.
- Use clichés
- It’s God’s will…..(This only makes the person feel like it’s their fault)
- You’ll get through this…(Maybe they aren’t feeling strong and need time to feel scared and vulnerable)
- You’re not dying…. (They already know they are dying)
- Follow their lead. Do they want to talk about certain fears, talk about dying, or do they want to talk pleasantries to feel normal.
- Ask questions but don’t steer the conversation. Some questions to ask are: Do you want to say more about that? What do you think is happening? When you think about the future what worries you?
- Be honest but don’t give up hope. For example, if you and a sibling are estranged and your dying parent asks if you have spoken you don’t have to say “It’s never going to happen”. Try saying something softer, like, “It’s a work in progress”. That isn’t lying but it fosters some hope.
- Go with your gut. Don’t worry about what you think you should do.
- Touch. Touch can often be more effective than talk.
The hardest thing, but the best thing to do, for a dying person is give them your time and attention. Being present and witnessing their hurt and fear allows the dying person to be exactly where they need to be in the moment. It is the best form of communication you can provide!!
When I tell people I own a hospice, as well as a consulting company for end of life support, I invariably hear, “That has to be hard, I don’t know how you do that?” or “I really admire you, I could never do that”. From time to time I even get, “How morbid. Why on earth would you do that?” (That last one is my favorite to answer by the way).
I do what I do because death and dying is where life becomes real. People are raw and completely authentic for one of those rare moments in life. I work with some of the most intense emotions known to us as I support patients and families as they maneuver through end of life. I’m with people all day at their heart’s level. It doesn’t matter if I’m seeing a client or working with the Promise staff as they care for patient. Everything is linked to a human being leaving this world and leaving loved ones behind, to pick up the pieces of their life.
Envision yourself lost in the ocean, the water tumultuous, spinning one way and then another. As you try to find the direction you need to go, you get smacked in the face with a wave that leaves you breathless and lost. You open your mouth to yell for help as another wave hits you as you breathe in water. You sink underwater being flipped upside down, drug one way, and then another way, the whole time without air. You’re panicked, lost, scared and so cold. Then, out of nowhere, a life raft is thrown out to you. You grab ahold as you try to find solid ground somewhere, anywhere. The raft can’t take away pain or fear, or even fix your surroundings. What the raft does is steady you, take some of your worry from you, stays with you without faulting until you get to the place you need to be.
As a patient or family member you are lost at sea, and I am your life raft assisting you to find solid ground. THAT is why I respond by saying that it’s such an honor to walk with people during their rawest moments and when their hearts are wide open. It’s a gift and a privilege that changes how I live every single day.
I’m grateful for all of the families and patient’s Promise Hospice has served. My hope is that we make as much of a difference in your life, as you do in ours.
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