Waiting for death to arrive:
Some days, it’s easy to pretend the time isn’t drawing nearer every day. Some days, she’s smiling and mostly strong. Some days, her mind is clear and she’s funny and filled with stories of past adventures and brazen actions she’s taken.
The other days – suck! The days when she’s in constant pain and I can see her strength wearing away. The days when she struggles to convince herself that eating and drinking are necessary. The days she comes home from dialysis and is clearly not lucid and not completing sentences properly.
Terminal illnesses bring an interesting juxtaposition to pretty much every aspect of life. There’s hope and fear and pain and joy. There’s a celebration of what has been in the past and a gut-wrenching uncertainty of what’s to come. The person who has been diagnosed is thrown into a world of limitation and lack of control, but also an odd freedom as well. While there’s an overwhelming amount of information thrown at them, test and prognosis, medications being prescribed and a whole list of doctors and procedures… on and on. There’s also an often unspoken permission to do and say pretty much whatever the hell they feel like. If they’re mean or cold or do something to hurt someone else’s feelings, it’s automatically not their fault. There’s a freedom from responsibility for their actions. For those around them, that can seriously suck. How dare you get angry? How dare you stand up for yourself and say their behavior is unacceptable? They’re dying after all, they can’t help it. If the person who was deemed to have a “terminal” illness recovers and is declared cured, there’s a retroactive forgiveness for everything that occurred when they were sick. There’s excitement and relief and a never ending edge of questioning whether it will occur again.
Then you have the “helpful” friends and family members who feel it is their responsibility to tell you how you should be doing things. Sometimes, their hearts are in the right place, sometimes they just want to feel useful and involved in at least a small way, sometimes, they’re just control freaks who can’t stand the thought of anyone not “needing” their insight. After a while, you grow a thick skin with all of these people. Whether it’s just pure exhaustion or a primal self defense mechanism, you hit a point where all the words become just background noise and you do what you know is right in that moment. You may second guess yourself occasionally, but deep down, you know you made the best decision you were capable of making with all the information you had in that moment.
There are the wars with some doctors and partnerships with others. You learn the nursing staff is your connection to all things! They have the gift of putting things into terms that you can understand and are deftly able to tell you when it’s time to be worried or not.
There’s the physical and mental demands. You don’t get to be sick yourself, or tired, or just plain fed up with it all. You don’t get to be grossed out by the things that are straight up gross! Well, you do, but you can’t show it to the person who’s dying. Your strength is what you give to them, every single day. Your hope and your quiet or loud support of whatever they need you to be in that moment.
You’re on a constant vigil, whether you’re conscious of it or not. Every cough, every pain, every comment gets analyzed and recorded in your brain. You create ways to word questions so that you get the answer you’re really looking for, not necessarily the one that matches the question you asked. There’s no easy way to ask someone if they’re done fighting, so you find other ways to ask it.
Making plans for the future is both necessary and impossible. Some days I feel like my situation is unique, other days I realize it’s just a variation of the same thing thousands of other people are experiencing.
Death brings the gift of appreciation for life. We all know we’re going to face it one day, but when it’s not so intensely present, it’s easy to pretend that day is far away and we have tons of time. It’s easy to delay the, “one day I will…” moments and to settle for what’s currently in front of us. When you have someone close to you who is fast approaching the end of their lives, who is openly telling you what things they are happy about as well as all the regrets they have, it’s a hell of a lot harder to settle. There’s a perspective and an urgency that’s hard to ignore. Even in the grief, even in the uncertainty, even in the anger and fear and frustration.
There are so many gifts in the journey if you can hold on to them! There’s the gift of time, the knowing the end is near, so you have the ability to say what you need to say. You have a chance to ask the questions you’ve been wanting to ask but never got around to asking. You get super, super clear on what’s important and the small arguments or misunderstandings can be healed and cleared away. As a caregiver, you also get the ability to not give two shits about unimportant stuff or petty people. You get to stand back and see who is there for you and for them, and who just says they care.
If you’re in this position – please, please find a source of support! Find a way to occasionally step out of the whirlwind and take a moment to yourself. I know it’s hard! I know the guilt and the worry and the constant struggle that you have with your own fears and feelings! I know the depth of strength it takes to walk this road! I know the level of exhaustion you are experiencing, yet somehow manage to function with every single day. If you’re not in this position, but know someone who is, find ways to support them. Ask them what they need! Don’t assume they have the ability to reach out and tell you they’re struggling. They are. Until you’ve been there, you don’t know what it takes to hold space from someone who’s dying.
If you are a caregiver to someone who is dying, whether by circumstance or by occupation, know that what you do matters and makes a difference! Know that you are not alone and there are so many other’s who feel all the feelings and know the path you’re walking. Know that no matter what the outcome is, or how it happens, you have done everything you knew to do and you are a Blessing to the person who was lucky enough to have you there at their most vulnerable time.