- Diseases, Disorders & Conditions
When to Leave it Alone
I watch my husband of twenty-three years leave for his visit with his doctor and have a flashback of letting go of my five-year old son’s hand so he can go into the kindergarten class with the other kids. It is the progression of life and something I must accept.
I have railed against this news that my husband in the fourth and final stages of COPD and has been given a life expectancy of one to three years. I am the problem solver, the fixer. I don’t easily take to statements of, “it can’t be done, it can’t not be fixed.” Why not? Why can’t it be done another way or could we try it this way? This time it seems the answer is final. No, it will not get any better, only worse. No, there is nothing he or I or the doctors can do to repair the damage to his lungs. It will progress and that is that.
For the first time since I’ve known him, my husband wants to do this alone. It is his visit with the doctor, his instructions on how to manage the disease … his dying. Always, before this, he wanted me to go to the doctor with him, to ask questions he might forget to ask or to remember the answers. This time it is too personal. He wants to face it alone. I will, of course, respect his decision. I did not at first. While I was still in denial I demanded answers from him and from his doctor and a second doctor. I have to know details when I am facing an enemy. I want to know everything there is to know and I research every aspect as if knowing about it gives me control over it. He knows as much as he wants to know.
I steal glances at him as he sits in his chair and watches television. I look for some sign of panic, hope, something I can latch onto and be a part of, but I see nothing. Can I do anything, I ask? Maybe a cup of coffee he’ll respond or a sandwich. I try to reverse our roles and wonder what I would be feeling, what I would want and I can’t wrap my mind around him not wanting anything. I don’t know what my reaction would be but I do recognize this. He has accepted that he has this much time left and is coming to terms with it in his own way.
I know that using the oxygen helps him to breath and puts less stress on his heart and so I would remind him of this when he wasn’t using it. One look told me not to do that again. He has so little control left, the last thing he needs is me choosing for him how he manages or chooses not to manage this disease.
I need to talk to him, my best friend, the one I have turned to these past two decades plus, whenever I needed anything. He has been with me through so many tragedies and so many joyful events. We have shared everything. When his children were clearly becoming estranged from him from the seeds of bitterness his ex-wife planted in their souls, I fought to bring them back together and when that failed I would try to create diversions as birthdays and Father’s Days would pass with no phone call, no cards. When he had his heart attack, I beat the ambulance to the hospital and slept in a chair beside his bed for three days. Where else would I be? We are known as a couple. People know if they are dealing with one, they are dealing with both and that neither will make any important decisions without first consulting the other. It is simple respect and it is the result of becoming one which we vowed to do in our wedding ceremony and what we have done over the years.
Now, all he will allow me to do is promise that his wishes to have his body cremated will be honored. I even know which crematory he does not want handling this as they are known for their careless practices of cremating as many bodies as possible at once to cut their costs and he doesn’t want his ashes mixed with others, to the degree this is possible because he says they all do it, some are just worse then others. He does not want a funeral service. He believes no one would come. I ask if I can at least have a celebration of his life, for those of us who are left behind, so that we can try to process his death and he agrees, as long as I keep it simple. These discussions are necessary and I understand that and pay close attention but all the while I am screaming inside.
I don’t know how to do this. I don’t want to do this. How am I to do this, alone? These thoughts keep running through my mind like a broken record and I feel selfish for thinking them. I understand on a logical level I am not selfish and that I need to find someone to talk with about these feelings. I’ve even researched it on line, as I do every other thing in my life. Someone must have written something about this, there must be directions on how one proceeds. But no, there is a lot about the grieving process but not much about splitting yourself in half and watching that half die. There is much about the care taking of a terminal loved one and caution to take time for yourself and your needs.
We even went through this together as we helped to care for my ex-husband, the father of my daughter, as he died of cancer. They had become friends and built the privacy fence that surrounds our yard together, arguing the entire time about how it should be done. They spoke on the phone for hours when my ex was drunk and no one else wanted to listen to him ramble on about his life. I was with him when he died and my husband and I helped with the cleaning of his body so that my daughter and granddaughter could see him before the funeral home people took his body from his home. We have gone through the deaths of each of our mothers, his father and our best friend, together.
Together. But this time, I have to do it alone. I have to leave it alone, his dying is something he wants … seems to need … to do alone.
I’ve had a couple of people say that in a way we are blessed to know this is coming and to have this time to prepare. In some cases I would agree. If a loved one is taken away suddenly and you have had no time to tell them how much you love them, if, God forbid, your last words spoken were those of anger, if you had no idea what their wishes were for the handling of their final arrangements, their funeral. But none of this is the case. There are only these numbers hanging out there – one to three years depending on how he manages his care, depending on whether or not his heart gives out first.
He has no “bucket list”, I’ve asked, believe me. His physical and psychiatric health is not at all conducive to travel. I’m pretty sure he would enjoy it if his kids would visit but he has told each of them what the doctor says and so far there are no plans for any changes in the way their relationship has been handled. There have been occasional phone calls through the years and even a few cards sent and I suppose that is the way it will continue. My son is probably closer to him than any other person on earth, other than the obvious. He is furious at the situation and somewhat in denial but they have both a spoken and an unspoken bond that says love and respect. No, that is wrong. Our six year old granddaughter is closer to him. She broke through that iron wall and he is her PaPa. He had been a little less involved in interacting with her before the doctor announced his diagnosis but that was because of his declining health. He still slips her a piece of chocolate before dinner and exclaims over the latest refrigerator art she proudly brings to him. They exchanges “loves” a hug and a kiss when she arrives for a visit and when she leaves and she spontaneously leaves what we are doing and gives him loves throughout her visit but they don’t play now.
I am trying to develop some sort of perspective in dealing with all of this, some formula, maybe a guide book. I try to remind myself that I have the right to feel sad and afraid and even angry. For the first time in my life with him, I do not know what he is feeling and he is not sharing, not with me anyway. I want to ask but it is an intrusion. I wait fro him to say, “We need to talk.” So far, it has not come. I guess for now, it is simply knowing when to leave it alone..
I just want to add that I do not write of this for statements of sympathy. I know the love that is here. If there are any suggestions I welcome them. If there are links to similar stories or articles on the net you feel might be helpful, I certainly welcome those too.