When, For Worse becomes, Longterm Compassionate Care

I just read that Yolanda & David Foster are divorcing after being together for nine years, four of those spent in marriage. That’s a very long time. Longer if you are with someone with a chronic illness because some of those days tend to be long, trying and frustrating. I can say this because I am someone with a chronic illness who was in a long term, committed relationship with someone who didn’t have a chronic illness. I can say there were days that I felt bad for my partner. And like Yolanda & David, the pressure became too much and we eventually popped. Loving someone in constant agony became too much, at the end of the day.

At the very beginning, I was angry. How dare he leave me! How dare he leave me here alone with this disease and our child! How dare he give up on me and us! How dare he be scared of…of…of…whatever is happening to me! This was of course fueled by the mound of friends who loved me, but didn’t have to live with me while I vomited through the night. They didn’t have to sleep in a bed with me when I pooped & bled through our bedsheets. They didn’t have to pull the hair that fell out of my head, out of the drain to keep it from clogging. They never had to rush home in the middle of work day to help me change the baby’s diaper because I didn’t have the strength or the mobility to do it myself. They didn’t have to remember the countless names of pills, supplements and procedures I had done. They never had to shoot cortisone through my butt, because I just didn’t have the strength to do it myself. Their finances weren’t affected by my countless medical & pharmaceutical bills because I couldn’t get insurance. They had watched me whither away…from a far. So, yes, they were very quick to rally behind me with fire and anger against the poor man. The father of my child. The man I had loved more than there were stars in the sky. My caregiver.

Through that anger, I had forgotten he was all of those things. Actually, there were days that I found myself becoming jealous of his health. They way he could eat food. How healthy he looked. They weight he had gained. The fact that he could go to work…hell, the fact that he could just leave the house. Sometimes I resented him for being so damned…HEALTHY! LOL! Seriously! He could pee without having to poop every time. And by poop, I mean, not have blood and mucus come out of his ass without being able to control it. My resentment bled over into our relationship and after a time he started to resent me for not being the partner, spouse, mother and best friend I had committed to being. Well…in reality, it wasn’t as personal as we thought. What we resented were the circumstances. The disease. The disease was our enemy. Neither one of us really understood it, and we both fought against it in the wrong way.

He resented having to be a caregiver. I resented the fact that he resented having to be a caretaker. Isn’t that what better or worse means? Isn’t that what you sign up for? No. No, it really isn’t. He didn’t sign up to be my nurse. He signed up to be my companion, my lover, the father of my children, my best friend and the head of our household. He loved me through my illness, but he was not equipped with all that goes with longterm compassionate care. And to be honest, I wasn’t prepared to help him learn. I realized a few months ago that I am just as at fault for the demise of my relationship as he was. Now I’m not saying that this is exactly what happened between David & Yolanda Foster. I just know a little something about loving someone while also fighting a chronic illness. And retrospectively, I sympathize with the spouse turned caretaker. I remember my grandmother saying to me one day, “He wasn’t ready for you to be sick. It’s a lot of responsibility on him.” And I became so incredibly angry at her for suggesting that anyone should feel sorry for him. I reminded her that she was caring for my sick and disabled grandfather. “Honey, we are old!”, She said. “We’ve had our children. We have had our fun. We are living on social security and borrowed time!” It took about 5 years and her death for it to really sink in. If I could go back in time, I’d have a serious conversation with myself. There are five main things I’d emphasize.

Don’t Lie:

Don’t lie to him and tell him you feel fine, when you actually feel terrible. Because then his expectations are extremely high about whatever you have planned, and then he’s let down and you feel guilty. Unnecessary. Wouldn’t happen if you stay truthful and upfront about how you are feeling.

You Are Not Fighting This Alone:

Your disease lives inside of you, but it’s affecting everyone around you. Especially your spouse. Stop acting like you’re the only one suffering. He doesn’t like seeing you in pain. You share a bank account, he’s paying for the outrageous cost of medications, tests, emergency room visits, procedures, etc. too. If you can’t have babies, he can’t have babies. Stop feeling sorry for yourself.

Join A Support Group:

Don’t go to group by yourself. Bring him along. Let him meet other families affected by your disease. Talk about his feelings in regards to the disease and how it’s affecting your family.

Accept The Help:

Stop pushing the help away until it’s too late and then getting angry when he can’t read your mind. You’re a team. When you’re down, he’s got you and vice versa.

Positive Reinforcement & Praise:

Show your gratitude. Stop allowing guilt to take over and show a false sense of arrogance. Say more than, Thank You. Go out of your way to show you appreciate the help. It doesn’t have to be elaborate, but just find a way to remind him that you love him and everything he does.

Of course, all of these things are no good for the past relationship. But I’ve spent the last four years trying to work on me for the next go around. And I’ve decided that I spent years trying to control my disease and then ignore it when I couldn’t, instead of embracing the change. And because I didn’t do those things, I didn’t see my son’s father for what he was, my caregiver. I didn’t appreciate the fact that he did more than the average father and partner. He had more on his plate and I didn’t help him do his job. Now that I realize what a profound mistake it was to ignore the significance of the impact my disease was having on the dynamic of our relationship, I can be sure to fix that when love comes knocking at my door again. Yes, that person has to accept that I sometimes get sick and that I have limits. But, I also have to respect their position as partner, father and caregiver. Long term compassionate care takes two people, not one.