(Gordon Lightfoot reference)
Members of my family came when I went into the hospital the first time, for the surgery. People gathered at my house and seemed to be having a party, based on the pictures I later saw.
But some of them gathered together and did things that are out of the ordinary, in my opinion, while I was in the hospital, while I was in this coma.
They did things at my house that were simply things I should have already done myself. They cleaned my shed. They weeded the areas around my trees (and if I find out who planted the strawberries, Kim, I will hire an assassin :)). They did things way beyond what should be expected.
And, they cleaned and cooked.
And they cried.
I’ve told you previously, my dad couldn’t handle all of the marks on my face indicating where I was going to be cut. He left the room, in tears. I do not remember him there then, and I do not remember him there later, when he said I moved my hand to say hello to him while I was supposed to be in a coma. I WAS in a coma, and so I do not remember that. But who knows?
He came 2,000 miles to see me. With his wife. Both in their 60s and with better things to do, I am sure. But they came. I had not even met my rather new stepmother yet, but she came. I do not remember it to this day, but I am told she was there.
My little brother and his wife (KIM…did you do the strawberries?:) ) were there. Bill works for fun, I think, and he did.
He saw me after the surgery, and he had to leave, with tears in his eyes. We grew up together in tough times by today’s standards. For fun, sometimes we would pretend we owned things from the Sears catalog, and then pretend we had them, canoes and rifles and parkas and whatever, and would act it all out. We should have been actors, in fact. We built log cabins in the woods that were only two feet high, but had several rooms. In today’s economy, they would probably not have the worth they had then. We should have sold when I was 10 :).
I know there were others. All of our local friends were there, as I’ve mentioned. It looked like a party in the pictures I later saw.
On more than one occasion, my wife’s friends came to rescue her from me and take her to lunch, or to dinner, or for a drink or two. To save her sanity. I have probably never thanked them for that. At the time, I probably suspected them of devious plots, and her as well, such was my mindset, but in truth, they saved her. They did. The thing is, a happy caregiver makes for a happy survivor :). (Okay, there is no ‘probably’ about it. I KNEW they were plotting to take my wife to her boyfriend, someone I invented while in my psychotic Ativanistic/Demerol state.)
I always say (except when I am in my paranoid, psychotic Ativanistic/Demerol state), I really do: take care of yourself, oh glorious caregiver! For you must care for me! And I want you happy!
Take that to the bank, folks.
Happy doctors, happy nurses, happy caregivers…you will be happier. I know that studies show that a positive attitude (or negative) has nothing to do with survival rate, but believe me: if you are happy, and if you can keep THEM happy, you will get better treatment. I am probably repeating myself, but you need to realize this, that those folks deal with tragedy every day. And your personal caregivers, pretty much, learn that same drill: they are dealing with tragedy. In fact, they are closer to it than your needle stickers! They are your caregivers! Keep your personal caregivers happy.
If you can.
I read, and listen to, troubling stories. A man who leaves when his wife has cancer; a woman who treats her husband badly when he is discovered with cancer; a family divided by the cancer of a child. It goes on and on. Without doubt, cancer can do much more than rob you of vitality, of limbs, of lungs, of breasts, of hair, of hope, of humor. It can impact your family and friends AND you in such a way that goes way beyond the physical.
You lose friends. I know. There are a lot of reasons for this, I suppose, but I tend toward the idea that they are afraid of mortality, and are not yet ready to face it. Some of you argue that they are only your friends when life is fine. That may be so. I like to think that my friends simply are not happy to see me the way I am (or was); are not happy to see me when they think I am dying. They are afraid to have mortality stare them in the eye, afraid that they will blink.
That is my preference. I am sure it does not hold in all cases. But I like to give people a break. And if they choose to stay away, well, someone is losing out, but is it me?
You lose family, too. I was surprised by this. I am fortunate to have a very close and supportive family, both here in my home and in the extended version. My daughter, for example, who was also there that first go-round, made construction paper sayings from famous people like Lombardi and Gandhi, and Emerson and Einstein, and who knows who, and littered the room I woke up in with these messages. (I had to fit that in.)
That meant more to me than she will ever know. But, I now know that others do not get that same deal. A young lady friend of mine had to take herself to the chemotherapy sessions on a bus, and I found that horrific at the time. (Now, I know from my own experience that hauling your own butt to chemo is no big thing…usually. But still, I enjoy having my wife sitting next to me or across from me.) If I had lived in the same city, I would have taken her to those sessions myself. I had a posse of friends take me to radiation treatments daily, for example (I took valium in order to live with my mask, as I’ve mentioned, so these people were kind enough to take me, wait for me, and take me home…I offered to provide them special favors, but they all declined, for some reason. They were all women, and I only mention that because some of you, being my friends, are sick! Okay, I didn’t offer them special favors. I was as sick as a dog on his death bed. But I would have provided them with special favors at a later date, now that I think about it, and probably should have made some cards and passed them out each day. Could have been a very busy summer, such was the support of our friends!)
I know that the family can be in denial, can be angry even, can blame you for your cancer, can blame you for subsequent financial problems. I know that. I know that they can fear life alone, after all, and I know that they may be frightened by the prospect. I know that caring for us can be a big load, is usually a big load, especially right after surgery, during radiation or chemotherapy. I know that some of them have to work around their own careers to care for us and find fault in us for that, some of them. I know that they worry about house payments and car payments and utility payments. I know that they get loaded up with all of this on their minds while maybe having to make special meals for us, or clean up the results of our nausea, or change our bandages, or make us take our medications as prescribed.
We have to give them a break.
They are as scared as you are. They may be more scared than you are. I have said it before and will say it again, I’d rather be the survivor than the caregiver. How frightening to think that your husband, your father, your son, your daughter, your wife, might be dying? How alarming to imagine that you might be raising children alone? That you might be 60 years old and having to fend for yourself suddenly? That you might have to grow up without a daddy? Without a mommy? How frightening to imagine that one of your children might die before you do?
Most of us, I am pretty sure, who have or who have had cancer, prefer it this way. Give me the cancer.
And it is not because we are heroes, but because we are cowards, to be honest. In a sense. If you are a survivor, you know what I mean.
I think I have finally gotten to it, folks. Caregivers are heroes. And heroines
I think that the people who have the opportunity to care for others, if they bail out, they are missing out on a wonderful mission, I do. But I do not blame them. I believe that the ones who stick around, who do the deal, they are heroes and heroines. I do. I truly do.
When I talk to cancer survivors, we almost invariably get around to caregivers, and a few are disappointed, to be sure, but mostly I hear about people who are doing things outside of their expertise, even outside of what they thought they could tolerate. They are changing dressings, they are making protective shower clothing out of trash bags (wish I had been there for that one 🙂 ), they are injecting, they are inspecting, they are reflecting, they are objecting, they are insisting, they are resisting, they are desisting. They are being pains in the butt when they need to be, they are being gentle and giving when they need to be, they are feeding and heeding and leading.
They are all of that and more. If we are lucky, us, the survivors.
And when we spend our time talking about our psychological and physical issues, we rarely consider the caregiver, if ever. I maintain that their psyches, their physical well-being, take a bigger beating than ours sometimes. I say this as someone, well, you know. (And, okay, maybe they do not take the physical beating we do.)
They become depressed and anxiety-driven. They lose weight or gain weight abnormally. They cannot sleep. They are in constant stress. I say this again, too: we sleep through stuff they do not have the allowance to sleep through.
We worry about us. They worry about us. Who is worrying about them?
We should be.
Wives, husbands, brothers, sisters, children (especially), we should be worried about them. And we can do something about that of course, by being positive, and by insisting that they take time for themselves. We cannot be selfish. We cannot be selfish. A happy caregiver, a well caregiver, is a great caregiver :).
And, again, ‘studies’ say that being positive does not help your ultimate outcome. I beg to differ. As with the care you get from the professionals, if you present a positive front to your loved ones, you will not be surprised by the level of care you receive. I must insist that a positive attitude is good for you. And, by the way, it is good for your caregivers/family, which is at least as important.
I have more to say about caregivers. I do. But I do not believe that I can convey the enormity of what they do in words. The phone call from a family member, the card from a friend, the teddy bear in the mail from a fellow survivor, the rubber chicken slingshot from another fellow survivor :). A poster from a soccer team: their picture and the words “GET WELL COACH”. We all have examples of that. And it goes on and on.
And it all means so much (except for the strawberries, Kim!) :).
Actually, even the strawberries meant a lot. Thank you Kim. I will kill them all, eventually :).
If we are lucky enough to have bona fide caregivers, we are lucky indeed, no matter who they are.
I salute them and do not envy them and do not want to be them. I have advised my wife that she is lucky I got cancer instead of her, not because she would have had cancer, but because my caregiving would suck. Pardon the slang.
I do not know how they do it. But I love them for it. All of them.
All of you.