How do you say “goodbye” to your everything — husband, friend, constant companion, and full-time caregiver? On Sunday, January 24. 2021 at 2 pm, I had to and it was the worst moment of my life.
My husband of 23 years, James, had heart failure for many years, but his body continued to compensate for it. Told by the doctors he was a miracle for still being able to do the things he could, it was decided before Christmas he was a candidate to be evaluated for a heart transplant. Excited, yet apprehensive at the same time, we expected testing to start mid-February.
During a routine scan of James’ implanted defibrillator, it was discovered he had developed Atrial fibrillation. It was recommended he check in to the hospital where they would treat the condition starting with drug therapy.
As he prepared to drive himself there, I deeply regretted that my physical limitations prevented me from accompanying him — I would have no way home and in his words, “there is nothing you can do there, hon. It’s okay.”
Thursday night’s call from him revealed he was finally admitted but placed in the ICU. My heart skipped a beat. “ICU?”, I asked. He replied it was so they could try to keep a closer eye on him. He still sounded like James.
Friday brought no answers to some strange issues he was having the previous week: diarrhea, nausea, inability to rid himself of excess fluid. The Afib was not responding to the drug treatment. Momentarily stopping his heart was discussed for the following day if there was no progress with drugs to combat the Afib.
I phoned him. “How do you feel? Any better?”, I asked hopefully. “I feel different.” was the answer. “Worse? Better?. I pleaded. “Just different.” was his response.
On Saturday at noon, they stopped his heart and the Afib was successfully treated. The beats were normal. He called me and was groggy and hoarse. Having been intubated, his throat was bothering him. “You sound groggy yet”, I said. “Of course, it always does take you awhile to recover from anesthesia and that tube is not your favorite thing.”
But he sounded drunk. His words were slurred, his reactios were slow and he said, “I feel weaker.” In the distance, I heard a nurse assuring him he was okay and had moved himself up in bed when requesting more pillows to raise his head. I said goodnight because he said he was tired. Upon hanging up, I was concerned that he hadn’t sounded better that long after anesthesia.
9:22 am, Sunday
Caller ID says “James Fogg”. Great, he’s awake I thought. “Hello!” I chirped with enthusiasm. “Is this Lori?” “Yes.” “Your husband isn’t doing very well”. My heart drops into the pit of my stomach.
“His heart is failing. We need to know what you want to do if he goes into cardiac arrest.” This was the conversation I had not expected. He was going to the hospital for a couple days for medication adjustment. Now they tell me he’s dying.
James had been quite clear over the years that he never wanted to be prolonged by machines if the end result was clear — if there was no chance of recovery. I knew the answer, I did not want to face it or say it. But I did. “No, don’t attempt resuscitation.”
They held the phone up to James. I tried not to break down. I was massively unsuccessful. We said “I love you” through the tears and gasps. I heard the struggle in every word. He no longer sounded like James. The world blurred. I cannot remember the very end of our last words — I think he just got silent and a nurse got back on the phone.
The care team contacted me. They wanted to verify the DNR (Do Not Resuscitate) order. This women was much kinder than the nurse who called me from James’ own cell phone at 9:22 am and kept telling me to calm down, stop screaming, and did I really want them to shock him and put him on a ventilator. “Is that what you REALLY want”? — three times. (Yes, I did. I wanted to badly, but I knew he did not want that, so I finally gave her the answer she apparently found acceptable.)
The kind woman told me his labs showed extensive organ failure, his heart was failing, and there was no recovering. Together, we went over the options to keep him stress free. James was showing signs of confusion and was pulling at IV lines. The decision was made to keep him on blood pressure medication for a few more hours in the belief that he would pass on his own; if not the meds would be stopped after which his heart would soon follow.
As I sat waiting for the next dreaded phone call, time ticked by. I called the care team. “How is he? Is he in distress?” He was resting comfortably, they assured me. “Is he able to hear me? “Yes, he can.” replied the soft, kind voice. “I need to tell him it’s okay to let go.” I sobbed. “I need to tell him.”
“I’ll take the phone to him and call you”, she said. Five minutes later, my phone rang, “I’m here with James. I am going to put you on speaker. Go ahead.”
I hear the kind woman say, “James, I’m going to hold your hand for Lori. She wants you to know this is her and she wants to tell you something.”
I took a deep breath. God, let me get through this. “Honey, I needed to talk to you one more time. You know me…I always need to get the last word in and these kind folks helped me do it. I love you and have always loved you. I needed to tell you that it’s okay to let go. I know you’re a fighter and I love you for it, but it is okay to let go. I’ll be okay.” (I heard James tell a friend not long ago that he lived a good life and done most of what he wanted to achieve, It was not death that worried him, but me being left alone.)
She said he turned his head toward the phone and moved his legs as I spoke. Less than two hours later, I got the call. “He’s gone.” I whispered into the phone, “Yes” came the quiet reply.
I will never know if James realized how bad his condition was, but as he got ready to go to the hospital, his voice broke and he said, “I’m getting scared now.” He was really not feeling well by that time. I kick myself. My father died of heart failure. I knew the signs. Did I not see them? Did I not want to see them? Did he not realize or did he not want to worry me? How could it be that bad? He was going to get a transplant…
Give me back the chaos
The silence in the house is deafening. In the midst of everyday hustle and bustle — ringing phones, barking dogs, blaring TVs, I used to lament, “I just want some quiet. Just for awhile.” Now I have it. It’s not all it’s cracked up to be.
I have to remind myself to put the phone down when I get the urge to call him and ask a question. I find myself rolling into his office to share some news or a funny story only to find the chair empty and his laptop screen dark. “James, can you help me open this jar?” Silence. Miserable fucking silence.
Now the reality of just how much he did for me settles in. My amputation and wheelchair use limits me, but the advanced Rheumatoid Arthritis has one hand now clenched into a fist. As my physical health declined, his role as caregiver increased. I used to get so upset. “I was supposed to take of you. It was never supposed to be like this!”, I cried.
Into the future
I am scared of the future and life without James. Actually, I am terrified. I am not great with “change”, even good change. But every change in this crazy life for the last 23 years was tackled with my husband by my side. As he often joked, he was my “emotional support pet”.
He was my biggest cheerleader and my biggest fan. He was proud of my success with my blog and Facebook page and showed it. He was by my side cooking, photographing dishes, shipping from my shop, and his favorite thing of all — enjoying the foods featured in my recipes. My original instinct was to shut them down — the thoughts of any of this without him is unbearable.
He would not want me to quit. And because he was an integral part of my starting the blog and its success throughout the years, I will continue on sharing Coal Region foods and memories and hope that he will be by my side through it all in some way.
I love you, James — and it was okay to let go.
Many of you know me from my popular blog and Facebook page, “A Coalcracker In The Kitchen”. I unexpectedly lost my husband and sole caregiver on January 24, 2021. I have no remaining immediate family. Having lost my left lower leg due to infection 6 years ago, I have been a full time wheelchair user with limited mobility. My physical condition has recently deteriorated due to severe Rheumatoid Arthritis markedly reducing my dexterity, independence and tolerance for basic daily activities. The loss of my husband means the loss of the household income in addition to personal care assistance. My age means I am not qualified to receive care from many agencies and my immediate financial well-being is in jeopardy. It is currently necessary to find and pay for personal care assistance out of pocket to enable me to continue my ability to live in my current home until — and if — other suitable living facilities can be found. If you have been a fan of A Coalcracker In The Kitchen blog, or it has given you access to long lost and forgotten recipes, stirred fond memories of days gone by in the Anthracite Coal Region, or have taken advantage of the hundreds of recipes I have provided readers free of charge, a token of appreciation of whatever your budget will allow would help a fellow Coalcracker get through some very frightening and uncertain times and help me get the care assistance I desperately need immediately. I am also in need of leads to housing that is handicapped friendly and wish to move closer to the Schuylkill County area where I have more support from friends.