My husband, Micah, has renal failure (his kidneys no longer work) due to his type 2 diabetes. This means he’s on dialysis. He was diagnosed with diabetes back in 1999. I married him that same year anyway. I loved him and he loved me and that was all there was to it.
Later I came to regret that decision, as the disease ravaged his body, stole his sense of self worth, and made him (in my eyes) less of a man.
He became less of a man to me because I lost respect for him. I lost that respect because I couldn’t understand why he didn’t fight the disease tooth and nail. He made tiny efforts here and there, but he didn’t try to overcome. The best time for him to change was when he first found out. He could have prevented much of the misery that came later through proper diet and exercise. Instead, he put on blinders and covered his ears, and went into the whole “I can’t hear you, I’m just fine, I’ll just take a pill–whoops, I’m out, oh well I’ll get some more later” routine that ended up costing him dearly. In 2008, he lost his leg below the knee through a series of three amputations. He has lost his vision to the point he can’t drive. And then, of course, in 2010 he lost his kidney function and had to go on dialysis.
He has had so many procedures, been in the hospital so many times, it has become old hat. I just sigh, and take him in and the kids say, “again?” When the kids think being in the hospital is a state of normal, something is wrong.
I got angry. Really really angry. I blamed him for his lack of self control, for ruining our financial futures, for robbing our children of a healthy father. I blamed him. Our marriage–oh jeez. The damage it has done…
My husband has been trying much harder this last year. He is sick and tired of his health problems. He has lost weight. His labs, while not perfect, are looking better. He even signed us up for a symposium put on by the National Kidney Foundation. That symposium was this last Sunday. I’ve been stewing over what I heard and learned ever since.
There were several interesting speakers talking on a range of topics at the symposium. The first person to speak, though, struck me the most with some of what she said. She described her coming to terms with her own kidney failure as going through the five stages of grief: denial, anger, bargaining, depression, and acceptance. She described what each phase was like. I couldn’t help but notice the parallels in Micah’s life.
Patricia mentioned that when she went through her anger phase she gained a bunch of weight because she was pissed at her body and that nobody was going to tell her what she could and couldn’t eat. One thing that stuck with me was that she, as an RN, had witnessed all sorts of illnesses and things that could kill people. She had told herself a long time ago that if she ever got a life-threatening illness, she would do the right thing and do every little thing that she needed to do to beat it and have a good outcome. Then, when she lost her kidney function, she realized that good intentions mean nothing next to 40+ years of habit.
As she spoke, the dim bulb over my own head started to glow brighter as I came to a realization. The people living with the patient also go through their own five stages of grief. I’ve been living these same steps. I talked to Patricia later, after her talk, and she confirmed that yes, the home support team also has to deal with these things.
Apparently, listening to Patricia speak was the smack upside the head by the clue-by-four that I have seriously been needing and didn’t know I needed. I had been so angry and intent on blame that I didn’t see my own need for help and I hadn’t bothered checking out any support groups. Joining the support groups is highly recommended not just for the patients, but for their families as well. If I had, maybe I would have realized my wrong-headed thinking.
I was so angry, because I thought if I can change my eating, why can’t he? But every individual is different. Just because when I was diagnosed with gestational diabetes when I was pregnant with my daughter and I became very careful about what I ate and exercised and ended up losing 12 pounds during my pregnancy rather than gaining weight (my doc said that was fine, since I was obese, anyway), doesn’t mean he can just snap to and do the same thing. He doesn’t have the same background as me. He never took nutrition classes like I did. He never worked in a nutrition store for three years, like I did. For me, eating healthy was a simple matter. Heck, I was lucky enough to be given a head start in that healthy eating started with how my mom cooked for us. I’ve ALWAYS eaten low sodium and low fat. I’ve NEVER added salt to foods. I was raised that way. But Micah is NOT me. He grew up differently than me. And I needed to recognize that his relationship with food is greatly effected by how he was raised and those five stages of grief.
I thought for the longest time that our marriage was failing because he refused to take care of himself and as a result put us all in a horrible situation, but that’s not the case. It’s not his fault. He is in charge of his own health outcomes, yes. But I need to own my own shit in this, too. If our marriage dies, it’s because I couldn’t get past my anger. I love Micah dearly, but my romantic love over the last few years has slowly been stripped away because of anger, resentment, stress, and depression.
It’s like I had killed my husband off in my mind, because I had decided that’s where he was going to end up sooner probably rather than later. Do you know how horrible that is? To feel that? I had given up (a phase Patricia says she went through–which is part of the depression phase of grief). I vacillated between the anger and depression phases almost continuously since 2010, when he first had to go on dialysis. I gained 60 pounds from the stress of that in just over a year’s time in 2010 and 2011.
Several times during the symposium I found myself with tears in my eyes. Micah noticed and asked if I was okay. I wasn’t. I certainly did not feel okay. When we left the symposium and were walking out to the car, I turned to him and apologized to him.
I told him that I was soo wrapped up in my own anger and hurt, that I couldn’t see the process he was going through. And it IS a process. And it’s hard. It is really really really hard. I can vouch for that in my own efforts to reduce my sodium levels. I worry about sodium for me, but he has to worry about sodium, potassium and phosphorous levels, too! It’s crazy hard. I haven’t been a good support system for him and I acknowledged that.
Honey, I love you. I’m sorry. For judging you. For blaming you. For everything. Truly. And knowing what I know now, I would still marry you. I don’t regret it. Our lives have been really hard, and your disease sucks ass and I’m angry about it. But I’m not angry at you anymore. I’m angry at the disease. Maybe together we can finally reach that last stage of grief–acceptance. It’s a long time coming.