I’ve been writing this for weeks, maybe months. It’s on scraps of paper, notes to myself and in my head. It’s my life now – our life. There’s a new rhythm to our marriage that wasn’t what we wanted but life doesn’t always go according to plan so we deal with it, put one foot in front of the other and carry on what with what’s been given us. Part of my struggle with publishing this is that we’re intensely private people. I’ve never written anything so personal before and I wouldn’t have done this if I hadn’t gotten my husband’s support on telling this story. He is, after all, not only my best friend but my biggest fan and critic, as I am his.
I’ll cut right to the chase. My husband is dying. The difficulty of seeing that in print is indescribable. He’s been seriously ill for well over a year, now, and there is no hope for recovery. He has Stage IV COPD – end stage, to be perfectly blunt. His lungs have finally succumbed to too many years of cigarette smoking. Yes, he made bad choices, ignored the warnings and is paying the ultimate price for it. This disease is horrible. The inability to breathe, to take a deep breath, have led to all sorts of damage to his entire body. Every calorie he takes in is just as quickly gobbled up by the labor of simply taking another breath. At 5’7″, he now weighs 108 pounds. No amount of milkshakes or Twinkies can help to put any weight on him, so he is reduced to someone who looks not only frail but fragile. Cooking what he wants doesn’t always work, either. Eating is its own struggle when breathing is the priority. Any part of a meal that’s consumed is a victory, even though it means that he’s totally exhausted afterwards.
Other more undignified things happen to someone with advanced COPD. I won’t detail all of them, but suffice to say that most of his bodily functions aren’t working the way they’re supposed to work. The medications he has to take to stay alive add to the problem. Long term use of prednisone has left him looking bruised, and his skin has the consistency of tissue paper. When he falls, and he’s fallen more than once, his skin also falls away, making for weeks of ointments and bandages until it repairs itself.
The lack of oxygen and poor circulation have made him, for lack of a better description, a little loopy. He tries to find the word he wants to say, and, when he can’t think of it, becomes frustrated – with himself and with me for not grasping what it is he wants. He has flashes of anger during these times, which send me off to another part of the house in tears. I tell myself that it’s the illness talking, but the hurt is still there. I still see the lovely, sweet, kind man I married 36 plus years ago and find it hard to always understand that he doesn’t mean to lash out.
In fact, a lot of my time is spent trying to keep a happy face on while, on the inside, I carry equal parts tension, sadness and terror. Several times a day I check to make sure he’s still breathing, watching for the barely perceptible rise and fall of the bed covers. I take my own deep breath when I see that he’s still with me. It’s then that I can go about my day.
Going about my day is a tricky thing. I have to be ready to change my plans depending on how he feels at any given moment. Our outings have been reduced to numerous doctors’ appointments and, for me, grocery shopping. Getting him ready for his appointments is a marathon session, as donning each article of clothing requires a rest period. His home oxygen machine has to be replaced with a portable model. Extra batteries and medications have to be packed and put into the car. By the time we’ve left the driveway, his disposition has turned surly, as he’s already tired just from the preparation for the trip. Most of the time I try to keep silent on the way, as I’ve learned that my attempts at lightening the mood don’t really matter.
As his care giver in chief, I’ve become an expert on this disease. I’ve learned the language and understand the tests he takes with each doctor. I’m fluent in pharmaceuticals that relate to COPD, and can administer, monitor and look for side effects for each and every prescription. Google is my friend, leading me to websites which explain what the doctors are trying to achieve.
We are lucky enough to have a friendship with my husband’s cardiologist, and she also happens to be our neighbor. She has never lost patience with either of us, or refused to take our calls, even when they’re from me, in the middle of the night, having a panic attack because something doesn’t seem right. During one of my last overwrought conversations with her, she told me that she would see to it that hospice care would be put in motion, and, this week, she made good on her word. A whole team of professionals have joined us. A visiting nurse has been to the house twice, and she, like some sort of medical drill sergeant, has seen to it that we have what we need to make my husband more comfortable. A hospital table, wheel chair, new oxygen machine and special pillow were delivered by the next morning. FedEx has made two deliveries, bringing a plethora of medications.
As much as I find some comfort in having the hospice workers at our beck and call, there is a new sense of dread involved. It’s hard to explain, but I suppose that it’s the sense that this is a real thing, that my efforts aren’t enough. It’s as if the illness has turned into its own entity and nothing I can do will change its course. We’re not in denial about the outcome, well maybe I was, on some level, but this new-found help represents a game changer, in my mind. In one of the FedEx deliveries was a container of morphine. It’s not that I wasn’t aware of the need for it at some point. Our doctor friend had explained why she would order it. I see it, however, as another reminder of the severity of this illness. When I administered the first dose to my husband, my hands shook and I hovered over him until I was certain he was going to be okay. Frankly, I hover a lot lately.
The illness has claimed me as a collateral victim. All of the worry and stress have taken its toll on me, too. Sleep, which has never been easy for me, is nearly impossible now without some sort of medication. Even then, it’s not what one would consider restful. I wake up tense and with a sore jaw, having slept with my teeth clenched. My back and shoulders ache from tension. I pop Tylenol like candy, but nothing really puts a dent in how I feel. It’s there, all the time. I find it hard to concentrate on anything. Reading a book, watching TV or even walking through the grocery store, my mind drifts back to what has taken over our lives. You see, our lives are not ours anymore. The illness is calling the shots, for both of us.
I’ve told friends and family that I feel as if I’m disappearing – the person I once was no longer exists. The illness steals parts of both of us. The couple we were has turned into the patient and the care giver. I miss those people. I miss our impromptu dances in the kitchen when one of our favorite songs is playing. I miss the man who could make me laugh when I wanted to be mad as hell. That used to really piss me off, but I’d give anything for his goofy self again. More than anything, I miss just talking to him. He was always my sounding board, giving me advice or not, depending on the situation. No one knows me like he does and no one ever will.
Our long conversations have been had. The future has been discussed. Plans and arrangements have been made. Grief has already begun. This illness and all of the things that have taken place feel like some sort of long, drawn out dress rehearsal for being his widow. Learning to do everything myself feels like I’m preparing for the time when it will be just me. I spend hours alone, finding ways to keep busy or distracted by other things. The quiet sometimes seems like too much to bear. Despite the people around me and the hospice workers, the journey is incredibly lonely. I cry at the drop of a hat and at the most inappropriate times. Any random act of kindness, even an offer to carry my groceries to the car can bring me to tears. I’m just so tired and overwhelmed, so any help seems like a lottery win.
I’ve learned a lot about life and myself through this ordeal. I’ve found out that I’m not as impatient as I once thought I was. I’ve come to realize that I can’t do it all, and that asking for help is not a sign of weakness. People are more than happy to lend a hand if you just ask for it. I’ve become more tolerant and understanding of those who make mistakes or do things that aren’t necessarily good for them. We’re imperfect beings and, at some level, no one is without their fair share of faults and flaws. The biggest lesson is this though – wherever this road takes us, and whenever it ends, I know that I have been loved, more than I could ever had hoped and for that, I’m grateful.