Death 101Read Now
If you are reading this with a loved one who is facing their own mortality: I'm so sorry.
Whatever the circumstances it is a hard, heart rending time.
Here is some basic information to help you feel more calm, confident and in the present.
First and foremost it is important to take care of yourself. You must apply your own air mask before helping others- said every airline ever. My top three tips are:
1) Drink water. All the time. B vitamins wouldn't hurt either.
2) Get outside everyday preferably multiple times. There is something about being under the sky that can right our ships in the stormiest of weather. If your mind is racing focus on your senses one at a time and name five things that sense picks up.
For example, name 5 things that you see, (then five things that you smell and so forth). It is an exercise in getting you back into your body.
Finish by standing still and taking some deep breaths with slow exhales. 4,5,7 comes to mind. Breathe in for 4, hold it for 5 and release it slowly for 7,
3) Eat good food. Not 'fakey good' which is food that tastes good but isn't actually nourishing, but good good. You would be surprised at how easy it is to forget.
For your person who is dying
1) Allow them to talk about what is happening to them. In their bodies and their minds. Listening is the most healing thing you can do for them. You might start the conversation with, "What do you want to do with the time you have left?" or "Is there anything that is weighing on you right now?" "Is there anything you want to talk about?" As they are sharing try not to offer advice or fix anything unless it is very, very clear that is what they are asking of you. I find it helpful to say "Tell me more about that." Allow time for silence. It is in the silence that the most work is being done. If you fill it with banter the opportunity is lost. You are holding space for them to do their work.
2) No matter where they are make the space around them sacred. Clear the room of clutter. Soften the light, Add music or candles if that is wanted. I love the smell of beeswax melting, but maybe for your person it is lavender, or chocolate chip cookies baking, or their favorite pot roast. Whatever is comforting to them.
3) A big part of making the space sacred is controlling what happens there. If you compare it to a woman in labor you will get the idea. You wouldn't sit and talk shop in the labor room. The same courtesy should be extended to the dying person. This is hard work and they do not need to be pulled away from it by unnecessary distractions. A birth doula once explained it to me this way. A woman in labor is like being in the middle of this river. The doula's job is to keep the woman there so she can do her work. The doula controls what the atmosphere in the room is like per the previously given instructions from the woman herself. The doula alerts her to who is coming and going so there are no jarring surprises. It's much the same with death. The dying person needs to be able to recede from this world in their own way and not be called back by sounds and lights that could be startling.
4) Some of the work of dying can be difficult to witness. There can be an uncomfortableness about it that cannot be totally mitigated. It is important as the caregiver to stay calm, do what you need to do to take care of yourself. It is also important to keep hospice up to date about any and all symptom changes. Pain is much more difficult to control when you are behind it. There are medications for anxiety and agitation. Hospice can only be there 5% of the time but they are always only a phone call away. Unfortunately during such an intense experience it can be easy to forget to call. I've been there.
5) Hire a doula. At least have a conversation with one. I know how hard it is to involve one more person into the mix, but believe me you owe it to yourself to at least have a conversation with one. I can virtually guarantee that it will make you feel better. Less alone. Less stressed. Less at a loss as to what the next step is.
He was sitting on the edge of his bed. He was so thin I had a hard time believing that he had the strength to sit. His cheekbones jutted out, he had long hair that hung in loose strands around his face. His eyes were piercing when he had the strength to open them. I introduced myself and asked if he was up for a visit. He looked at me with these intense eyes and said, "What exactly would that entail?" I immediately liked him. I explained why I was a hospice volunteer (because my husband had died in this hospice in 2013 and I had a soft spot in my heart for it) and wanted to know if there was anything he had on his mind that he wanted to talk about. Just then the nurse came in to retrieve his lunch menu card. He hadn't filled it out yet. The nurse seemed surprised and said something to the effect of "Let's go". Matt who was pretty heavily medicated and weak took the piece of paper and a pen in hand very slowly and said to himself, "Come on Matt, suck it up!" He said it a few times. I offered to be his scribe and he roared "I don't need you to do that!!" He also mumbled repeatedly "Be patient with me." I did nothing but listen and listen really hard because he spoke very softly and it was clear there would be no repeating anything. Sometimes there were full minutes between his sentences. He finished his menu and we talked for about ten minutes. I ventured that it was curious that the nurse had been in such a hurry but had not come back to get it. I said this in a laughing way and he laughed too. He went on to say how everyone was incompetent. And we laughed and he complained about everything. I could feel love pouring thru me for him. He was erascible and witty and lovable. I don't mean that in a patronizing way. I mean it in a way where I was connecting with him on a human to human level despite our different circumstances. We talked about his high school and recurrent dreams that he had been having. I ventured that he must have been his own boss. He was surprised at that and said "I have always been my own boss." I laughed and said I couldn't imagine him being anyone's subordinate. He went on to tell me that both his parents had died by the time he was 17. He had spent an entire life time fending for himself. I wondered aloud how it must be hard to be taken care of now.
Finally his food came. He had a very hard time swallowing his first bite. This is common in hospice. The day where you can no longer eat food. You don't have the saliva and the swallowing ability to get the job done. I gently offered that he could have a smoothie instead. He looked up at me thru his hair and said, "And that's supposed to make me feel better?" More bittersweet laughter. He slowly lifted his plate and motioned that I should take it and put it in the far corner of the room. I said, "Are we banishing the food?" He said "Yes". He went on to pick up other things and I could tell whether they needed to be banished or put away. Most of the time. I got into some trouble with the salt and pepper. They had a special spot on a chair. Eventually he started falling asleep. I said I would go visit other patients and come say goodbye before my shift ended. He said, "No,no, no its ok." and then fell asleep. I went and did my rounds and came back towards the end of my shift. He was sitting on the edge of his bed with his hands folded on his table. He said, "I don't know when you work again but I have a feeling this is going to be the last time I see you." I said, "I think you are right." He crossed himself and knocked wood. After some silence he said, "I'm so pissed. I'm so pissed. I'm so angry." I asked if this was a new feeling. He said that it had started a few days before. It coincided with when he arrived at hospice. I asked if it was ok that he was angry or did he wish that he wasn't? After some silence he said, "I wish I wasn't." I said, "I'm so sorry but I understand why you are." He lifted his head and looked straight at me and said, "YOU understand nothing." And it felt like a giant, heavy and permanent garage door slammed shut between us. And he was right. The audacity of a living person saying that they know what dying is like is monumental. And isolating. He waved me off. I asked if we could shake hands. He said no (because he was OCD and not crazy about germs) but offered a fist bump instead. I felt horrible. Jangly. I left and the stafff were treating me like I had done such a good job at getting him to laugh and interact, but I felt a big heavy lump inside that I couldn't outrun. I debated whether I should disturb him again but felt like I had to. So I popped my head in and said, "Matt?" He looked up and I said, "I'm sorry." He nodded and waved me off again.
I will never ever again say "I understand" to someone in a situation that I can't understand, As an end of life doula I frequently feel like I am walking across a field full of landmines. And sometimes the only way to know what they look like is to step on them. That is one I will never step on again. Thank you Matt. It was a pleasure to know you.