Something that many of us will have to deal with in our lifetimes is the care of a sick loved one. I don’t just mean like when your kid gets the chickenpox—I’m talking debilitating, life altering illness. As the baby boomer generation ages one of the things we need to think about is hospice care. People are living older, living longer but not always living well when they do. The human body might be getting more mileage but our minds, if nothing else, still wear down. General senility, dementia or Alzheimer’s…they all scare the hell out of me with respect to my own parents and my own future. Then there are those of us who have even heavier burdens to carry. Cancer. The big scary word kills more than just people, it kills relationships. Mental illnesses like bipolar disorder are a life-long roller-coaster ride that doesn’t give you a barf bag. For parents born with differently abled children…they find themselves facing a reality that their little one may never be able to fly out of the nest. These diseases are like vampires and they sink their F.A.N.G.S. into you. I’ve experienced this and I never know how to explain it to friends who haven’t been through it. Especially because when you are dealing with the illness of someone you care for rather than yourself, it’s hard to know what is yours to share and what isn’t. Even talking about how it affects you feels taboo—it’s still going to reveal details about the afflicted individual and there’s that fear of sounding like somehow you’ve turned their illness into your pity party.
I’m not sure what the answer is, and I’m trying my best to walk the line with my own loved ones, so I’m just offering up a summary of what I’ve experienced because we’ve got to talk about it somehow. Too many of us will have loved ones to care for in the years to come and we have to be prepared so that we can be the best, healthiest caregivers possible. The only way to do that is to share knowledge and experiences–even the unpretty truths of it.
Fear. First and foremost is the fear; fear that the person you love is going to get hurt, hurt themselves or be hurt by someone else. When you love someone who is mentally ill there is the constant worry that comes with it and it’s not just suicidal ideation you have to worry about. Someone suffering from depression is very often an easy target for someone looking to find a victim. We see it all the time with celebrity addicts—they always seem to be surrounded by people eager to feed their illness, serve as enablers and profit from it. Then when you are dealing with someone who is suicidal, your only hope is that something inside of them keeps them from taking the plunge. I don’t believe in condemning those who do take their own lives—they have clearly suffered enough to get to that point, but you never want the person you love to get to that point. You want so desperately to be enough for him. Having been someone who was left behind, I know how much it hurts to feel like you weren’t enough. But I’ve been on both sides of this as someone who has experienced my own and love others with severe depression. I could never bring myself to an end because I couldn’t bring myself to hurting those I know love me, but at the same time I understand from standing on the precipice that no one can live for another. Ultimately the person you care for has to want to live for himself—and you have no control over that. Nothing is scarier than a total lack of control.
Anger. It’s inevitable that at times you will find yourself angry. You get angry at the rest of the world for being such a hard place, an unsafe place, and causing you to worry for your loved one. You get angry at the doctors who never seem to be able to do enough, even when they are doing all they can. You get angry at your friends for not understanding and asking the same annoying questions that you don’t have the answers to repeatedly. You get angry at yourself for not being able to get it all done. Worst of all you get angry at him (or her) because you are just so tired of the fear they are causing you. You want to get angry at the disease but there’s nothing to direct that at.
Narcissism. This one is tricky because you suddenly find yourself at times asking why this had to happen to you, even though you aren’t the one who is sick, you feel burdened. You have to choose to give up things you want or take care of your loved one and it leads to a gross feeling of being way too self-involved. Friends, even ones who get it, will get tired of the fact that you seem to make your own life and concerns a priority—those concerns are almost never actually about you. It could mean bailing on a concert because oops, your father is off his meds again or leaving a work conference abruptly because your sister is in the hospital. No one else sees the sacrifices you are making; only what you are taking from those around you. Your friends wind up suffering second hand vampirism as you take all you can from them but can’t give nearly enough back. Then you get angry about it again and then you cycle into….
Guilt. Guilt enters the party and this one is really, really not fun. You feel guilty for being angry, especially at the person you are caring for, because you know it’s not his fault. He didn’t go to the school activity fair and sign up on the extra-curricular list titled “Chronic Disabling Condition.” Then there are the aforementioned friends and coworkers you are constantly letting down—more guilt. The Jewish motherload of guilt is when good things start happening for me. It is so hard to be happy for yourself (a promotion, an amazing opportunity) when you love someone who doesn’t or can’t have those same joys. Then there’s the darkest level of it all, the guilt you hate to admit, the one that makes you sick to your stomach and twisting in some abyss of personal hell for being a horrible person because there’s the secret wish you can’t bring yourself to say that you feel guilty about. The wish that it would just end. That you could grieve and move on. It’s a normal feeling, it’s temporary and it’s caused by exhaustion because fear and anger suck so much out of you. It’s okay to have this fleeting feeling but it can crush you to acknowledge you did, and even now, even writing and trying to explain that I know it’s okay doesn’t ever make it okay. I still feel guilty about it. I still hate myself for it when it happens and what’s more…you can’t ever really bring yourself to admit it out of fear that it will inspire the person you love to “alleviate” your burden. Like I said I’ve been on both sides of this and that’s what happens. It’s the last thing you want, so you can’t admit, even for a moment, how tired you are. Then you feel guilty for the self-pity of that statement.
Silence. So you have to be quiet, you can’t talk about it, you can’t say anything. It’s hard as hell when someone else is struggling because it’s not yours to share. The person you are caring for might not want people to know he has cancer or bipolar disorder—and I can’t blame them for that. Health disorders are a stigma in this society and with information so easily accessible who wants a record that they are sick out there for future lovers, employers or children to find? On top of that you frequently find that your friends just “don’t get it” and the exhaustion of having to answer the same question when 4 or 5 people ask it eventually drives you into total withdrawal. It’s just easier to focus on your family and your problems because balancing a life with it? Impossible. You just want space to breathe and space to focus on the harsher realities of your life.
The best thing you can do as a friend to someone dealing with FANGS is to listen to them and give them what they ask for. That might mean they want to talk…odds are it means they don’t. Instead of asking all those questions that you always want to ask? Recognize that another 5 people have probably already asked them. True they are only things you want to say because you care, you want to understand, but there are ways of being engaged and showing that you care. Be prepared to listen but also be prepared to listen to silence instead. What do I do? What else. I bake. This is one of my favorite cakes Dorie’s book. It travels well, pleases almost everyone and tastes beyond sublime. She says it’s a great cake for sitting down over coffee and tea—and I have to agree. It’s also one of my favorite cakes to make. It’s easy and the smell is just so…soothing on days when I’m feeling a little nutty. Coconutty.
Coconut Tea Cake
From Dorie Greenspan’s Baking from my home to Yours Read more