I first came face to face with critical illness when I was 14 years old. I will never forget that day. It was fall and I was a sophomore in high school. I had just come home from school when my dad came through the front door. He asked me to sit down. He had something to tell me. He bluntly told me he had cancer. I remember feeling numb. He looked me in the eye and said "I'm going to die...someday but so are you...eventually. It's just now we have a better idea of when that will happen to me." Throughout his treatment, dad was very upfront regarding everything that was going on. While I appreciated it back then, I came to appreciate it more fully this past year when I became a cancer survivor. You see, even though my dad did not become a Christ-Follower until three weeks before his death, he taught me how to live with cancer.
This past year I got to start my own journey with critical illness. I learned first-hand of what it feels like to be on the other side of the fence. It is very tough and I have to tell you it is even tougher if you feel like you've been abandoned.
I'm going to be rather blunt and some people may not like that. If you don't like bluntness, you may want to read something else. I'm writing this in hopes that people may better understand how to support those who are critically ill and possibly avoid being bombarded by guilt and regrets once that individual is gone.
1. You need to remember that it is not about you, it is about the person who is ill.
If you can keep this in perspective, it will go a long ways in helping you effectively walk alongside the critically ill. Is it uncomfortable to face pain, disfiguration (in some cases) and death? Absolutely but you get to step away from it for a few minutes now and then. The critically ill person doesn't get that luxury. It is always there and it manifests itself at the most inopportune times. If you want the attention to be on you...please just leave and let them be. They're too busy fighting for their lives to take the time and energy to stroke your ego and you're just not going to get what you need from them.
2. Do not give them medical advice unless they ask for it. While this is not true of all critical illnesses, I know this is true of cancer: treatment is a very personal thing. Did you know that in the case of cancer, oncologists make recommendations and then you choose what you want to do? Many times a course of treatment is started only after the patient has spent a great deal of time agonizing over what to do. We don't make these decisions lightly and don't take it kindly when others do. We have the most to lose so perhaps we have actually researched it a bit more than you.
3. Remember everyone is unique. Even if they seem to have the same disease, there can be some differences and everyone also reacts differently. A lot of people wanted to recommend supplements to me while I was on chemo. What they didn't know was that the purpose of chemo is to destroy fast growing cells (healthy and otherwise). The normal ones will be replaced, cancerous cells will not. If you "beef-up" your immune system guess what? You're making it harder for the chemo to destroy cells including the mutant ones. Since I had a highly aggressive, fast growing cancer, I wasn't even allowed to take vitamins.
4. Don't blame the patient-even if they did make some bad choices No one says "I think I'm going to contract a critical illness. It will be fun!" Playing the blame game doesn't do anyone any good so just don't do it.
Here are some things to do:
1. Don't wait for them to call you. Call them. Please don't say things like, "Call me if you need me to do something." They probably won't. Instead say, "I want to help. What can I do for you?" "I would really love to cook a nice meal for you and your family. Is there anything in particular they like or don't like?" "I was thinking of baking some cookies with my kids on Saturday and then we're going to the zoo. It would be so much fun to have your kids join us. Would you mind if they come over?" You get the idea.
2. Talk with them about their illness but let them guide the conversation. While it is true some people are extremely private about their illness, far more are not. Talking about it is actually very therapeutic for most people. Usually, all you have to do is ask how they're feeling today and then look interested. You'll find more often than not that the floodgates will open and they'll tell you more than you ever wanted to know. In this case remember suggestion #1, it's not about you! If their response is abrupt, then they probably don't want to talk about it. Respect that and don't pry but at least you let them know you cared enough to ask.
3. Let them know you care through your actions. You may not know what to say and actually many times there is nothing to say. However, a simple hug or smile goes much further than you can ever imagine. Loneliness is a big issue for the critically ill, even in a room full of people. They feel vulnerable and they usually feel pretty ugly and repulsive. They also feel like everyone is staring at them or whispering about them. Yes, we do get a bit paranoid. After all, they're sick and they have been faced with their own mortality. They need to be touched, hugged and feel loved and valued even if they are ill.
4. Let them know you really are praying for them. However, please don't tell them they need more faith or start telling them about how everyone else you know has been healed. Unless they ask you about it of course. While you may think it will help, it usually does not. Remember, this is about them not about you or someone else.
These are just a few things I've learned as I've walked on this side of the fence. The critically ill walk a dark, difficult and often lonely path but God walk that path also. If you take a risk and offer to walk with those upon it, you will see and learn amazing things.
Thank you, I rest easier knowing that I have had a proper attitude toward this process. Mom moved into hospice yesterday. Beautiful facilty. The grandkids were able to visit. She perked up greatly at seeing them. Her room has a beautiful view of the snow that God has blessed us with today. I will pray for you.
An overarching principle we can glean from your blog is that we really must watch our words. It is by our words that we betray that we're thinking more about ourselves and the impact "her" illness will have or does have on us. It is by our words that we try to be helpful but say all the wrong things, "call me if you need anything" "you need more faith" "my friend chose [i]this[/i] treatment and is doing fine" "you need more vitamin C".
The other day I blogged about my knee surgery calamities and my 18-month ordeal with that. I learned that most people when they would ask me, "how are you?" didn't really want an answer unless it was "fine". And to get out of a conversation with me, people would dismiss me by saying "I'm prayin' for ya!"
Maybe the best thing we can do (aside from prayer, of course) is offer a critically ill patient our listening ears and compassionate heart and let them talk till the cows come home. And if they want, repeat the process tomorrow, even if they are repeating themselves.
Thanks for a great blog.
I was thinking about your mom today and she is in my prayers. Please know that there are some very dear brothers and sisters here at CB who are lifting you and your family up in prayer. I know this because they did it for me...and they're still doing it. May you and your family feel the very breath of God upon you at all times!
You are so right about touch! I should have added that but I had written a blog about touch awhile back. It was probably a couple of weeks ago. I can't remember right off hand. Chemo-brain :wink:
Anyways, while we all experience feelings of isolation, the critically ill really struggle with this. While there are probably a lot more reasons, here are a few:
We can walk into a room full of laughing people and suddenly everyone looks very sad and serious. We're not exactly the life of the party but you know what, we really need to laugh and believe it or not we usually still can at times.
Since we can make the mood of a "party" change so quickly, we often think it is better for us to just stay away. We really don't enjoy making people feel sad.
Most people feel awkward around us. They don't want to say the wrong thing so often conversations become very strained. We get the distinct feeling you'd much rather be somewhere else than be around us.
Most people instinctively try to avoid sick people. Believe it or not, there were people who thought they'd get poisoned by the chemo I had or even that their hair could fall out if they touched me in anyway.
Sometimes the treatments, like in cancer, cause disfigurement (temporary and permanent) and the person is extremely conscious of their appearance. Even if you don't think so, they may view themselves as some sort of freak.
You can see how actively reaching out and touching the person can really make them feel like you are seeing them...not their illness. Of course, unless you know the person very well, you may need to feel them out. I was really open and so easy to read that total strangers on the street would even come up, ask me if I was a cancer survivor, tell me about someone they loved and ask me if they could give me a hug. I always complied because it did both of us good.
Thank you for this blog. It is so very hard to walk along side a loved one as they deal with cancer. I know I haven't done everything right, I have tried to love on my mom and give her everything she desires or wishes and to make it easier for her. I have also tried to just treat her like a normal person, yes she has cancer but she still likes to just forget about it from time to time and just do normal things that are not in some way tied to cancer. Her reports are not good and it just crushes me as we walk this road. I cannot get off, there is no detour, I cannot turn back and she feels the same thing, if I were her I might just climb into my bed, pull the covers up and curl into a ball. But we can't we have to face it head on, and put one foot in front of the other and walk the road. How comforting it is to have someone walk the road with you, simply holding your hand.
Trust me on this one...you have done the most important thing right. You have loved her and not let her walk this road alone!
Trying to do those normal things are so important! We had a very late spring last year and it was pretty dreary. Even though I wasn't going out much at all during chemo, it really, really got to me. How I wanted spring to come as a promise that my own personal winter would not last for ever!
One day, my husband came home and found me in tears. He'd take off Fridays (to sit with me during treatment) and then Mondays and Tuesdays on my chemo weeks as I would crash so bad he just didn't want me to be alone. He worked half days the rest of the time as he just plain didn't like me to be by myself and since his employer is flexible, it worked for us.
Anyway, he told me that he was taking me to lunch and while he couldn't make spring come, he could take me through the rainforest at the Minnesota Zoo. Walking through the tropical garden in a controlled environment, watching the animals and listening to the birds did so much for me! I've never forgotten that day. Oh, and of course we had to go to Dairy Queen afterwards in honor of "spring". :wink:
Although your mom may not always say it, your walking beside her means more than you can ever imagine. To tell you the truth, watching my husband have to deal with my having cancer has been the toughest part of this journey. Remember that if you ever feel like she's pushing you away. We want to protect our loved ones from this horrible beast!