Helping my Wife Die
By: Jeffrey Spencer
Tags: Lovestory, Caregiving, Mwc Death, Hospice, Death And Dying

Allowing her to let go was the most loving thing I could do.

Photo by Aron Visuals on Unsplash

The alarm went off and I slid out of bed like I usually did trying not to wake Penny. Another regular morning on a cold January day in Minnesota. Nothing special. Coffee, walk and feed the dogs, shower, kiss Penny goodbye and off to the office. Penny didn’t stir when I kissed her. She hadn’t been feeling well and I wasn’t really surprised. Best to let her sleep.

A little after noon I got a phone call on my cell. It was Penny’s physical therapist. She was recovering from surgery and trying to get stronger for a trip to Hawaii to visit an old friend for a few weeks in the Spring. Penny wasn’t answering the door. This wasn’t anything new. We’d been here before plenty of times. An aortic stint may seem like a pretty big deal, but in Penny’s history, this was a walk around the block. “She’s probably still asleep.” I told him. And directed him to the bedroom window where he finally got her attention. In time, she made it to the front door and let him in.

Now I was a bit concerned, so I let my manager know that I was headed home to take care of Penny and that I wouldn’t be back into the office for at least a few weeks. “Penny’s not doing well.” was all I had to say. “Take as much time as you need” was all he needed to respond. Penny had struggled with chronic illnesses her entire life. It started with Diabetes. But the last ten years were a rollercoaster ride that included three transplants, osteoporosis, multiple fractures, pancreatitis, a heart bypass, lung cancer, an obstructed bowel, an aortic stint, countless E. coli infections and on and on it went. I don’t know how many times I had been in the hospital expecting her to give up the ghost. But no matter the twists and turns or loop de loops, she always came back for more. She was a scrapper.

When I got home, she was on the couch talking with Jim, the physical therapist. He said she had a temperature, was incontinent and really needed to go to the hospital. I thanked him for taking such good care of her and assured him we’d be on our way as soon as he left. After I’d seen him off, I turned to Penny and asked, “Do you want to go to the hospital?” “No.” she said with a furrowed brow. “Alright” was all I could say.

Penny always hated going to the hospital. I had stopped arguing with her about it years ago. I couldn’t make her go anyway. It was her decision and the sooner I figured that out, the less friction there would be. It came down to the fact that it was disrespectful to try to convince her. She knew her body better than anyone, and she also knew the truth that if she got admitted, there was a high probability that she would not come home. She did not want to die in a hospital. She was adamant on that point, always. One time her smile was flat on one side and I told her, “I think you might be having a stroke. We need to get to the ER.” “Okay.” She said. “But first you have to take me to Denny’s. I’m hungry and they won’t let me eat in the ER.” So off to Denny’s we went, and then the ER. That’s just the way she was. Everybody gets to have their own priorities. And it wasn’t a stroke, it was Bell’s Palsy brought on by an attack of shingles in the main nerve on one side of her face. She ended up with a shingle’s sore on her cornea that left her blind in that eye.

I set Penny up on the living room couch. She was too weak to do much more than get to the bathroom and the back porch to smoke a cigarette. In a few days, she couldn’t even manage that. So now our days consisted of me working from home and intermittently helping her to the bathroom. She had the ID Channel on the television machine on low volume. Strangely, the droning narrator soothed her to sleep while telling horrific stories: Fatal Vows, Evil Lives Here, Homicide Hunter, Deadly Women, Wives with Knives. “Are you taking notes?” I’d joke. “Should I be concerned?” And she’d just smile.

When Penny and I met it was a whirlwind. I’d been divorced for five years. She was a single mother with a teenaged daughter, Jessica. Her first marriage was decades in the past. We met while volunteering for Narcotics Anonymous. There is an amazing amount of work that goes into an organization that offers its services for free. We each had five years clean and found purpose in helping others find the miracle of recovery in NA. When we weren’t spending time volunteering together, I took her to the theatre, fancy restaurants, and countless NA dances. When I sang “Moondance” to her in a karaoke bar, she was smitten. I took her to France for a two-week vacation and a few months later we were married. I’m an incurable romantic and I wanted to give her everything she’d struggled without for all those years before she met me. We had almost 10 years of “pretty good” health together before the bull really hit the blades. The beginning of the end was when I had to take her car away. She argued with me, but her eyesight had failed to the point that she hit a parked car. I finally convinced her that she was a danger to herself, and that she might kill somebody.

Penny rested comfortably on the couch, for about a week when she confronted me in the back hall while we were smoking cigarettes. “I know why you want me to go to the hospital.” She announced in a belligerent tone. “Really? Why’s that?” I asked. “You’re just tired of taking care of me.” She had decided. “Well that’s just not true.” I responded. “I’ll take care of you as long as you’re around. If you don’t want to go to the hospital, that’s just fine. You can stay here and die if that’s what you want. It’s your life and it’s your decision. I would like it if you’d call Dr. Moore though. I’d at least like to know what’s going on.” I explained dispassionately. She relented. “Okay. I’ll call tomorrow.”

I’d become relatively detached over the years. There’s something about chronic illness that changes a person. Her world shrank. She became more narcissistic, paranoid and sometimes downright mean. My therapist confirmed that this is normal in the face of ongoing health issues that have no positive prognosis. It wasn’t her fault, but I had to maintain a certain level of detachment to survive emotionally over the years. It was hard enough to sit in a waiting room resigning myself to the inevitable grief I’d be facing only to have everything change and prepare for her long recovery. But then to have to do it again.

Over and over I held vigil in her hospital room, morning to night for weeks at a time wondering if this was the last time. That takes a toll. With each passing year, I became more of a caregiver and less of a husband. Of course, we still loved each other. But the nature and expression of that love changed significantly. The tender moments were fewer. Messes that needed cleaning up, more frequent. Accepting that change was difficult. I tried my damnedest to recapture what we’d lost but the inevitable disappointment was sometimes devastating. Pain doesn’t come from change, but from the resistance to change. Better to embrace it and find new ways to love rather than to regret what could never be again.

The following week we finally got in to see her doctor. It wasn’t good. She was dehydrated and her blood pressure was 70/30. “I could take a lot better care of you if you’d let me admit you.” Dr. Moore remarked. “No.” Penny responded with all the force she could muster. “I understand.” Dr. Moore said. He convinced her to stick around so he could at least get some fluids in her. Two liters of saline later her blood pressure had improved to a mere 80/30. Her urinalysis indicated a UTI. It could have been easily treated with antibiotics, but she would have none of it. The finish line was in sight and she had decided to cross it.

Penny was exhausted by the trip to the doctor’s office and was already asleep when I got her home. She slept the entire next day on crisp, new twin sheets that I’d picked up for her, only rousing when it was time for her medications. My concern was turning to worry so I broke one of our rules and posted a message on Facebook. Penny cherished her privacy, and I only had to suffer her wrath once when I spoke out of turn about her health. I learned quickly that it was not my story to tell. But even so, that Friday evening I sent out a message, “Penny is not doing well. I don’t expect her to last a week. If you want to see her, please stop by tomorrow”.

The next day, four of her oldest friends stopped by for a couple of hours for a lovely Saturday afternoon visit. Penny never left the couch but she was so happy and more animated than I had seen her in weeks. Here she is with our daughter Jessica on the right, our granddaughter Brianna on the left, Ellie is behind Jessica and Ashley is getting a taste of Penny’s broth. The dogs almost never left her side during the final weeks.

We got married in the Lake Harriet Rose Garden in Minneapolis. It was an unconventional affair to say the least. We were married by a Pagan priest and priestess. The guests surrounded us in a circle and Penny entered with Hannah, her cocker spaniel, Jessica, her daughter and her two best friends. My brother Phil played guitar and I sang Not too Much To Ask by Mary Chapin Carpenter. Tears all around. It made sense that we got married in a rose garden because I proposed to her at Murray’s Restaurant with bouquet after bouquet of roses showing up to the table “out of the blue” with a new card on each one until there were three dozen roses on the table. We could barely find room to eat. Did I mention that I’m a hopeless romantic?

Penny’s “going away party” drained her completely. She was barely conscious the next day, Sunday. That two-hour visit was the best thing for her though. I think it brought her some closure. Maybe it reminded her that after all the shit she caused in active addiction, she did live a life worth living. After she’d gotten clean, she made a positive impact on everyone she met. Their lives were better because she was in it. But, that event was a turning point. As much as she enjoyed herself, she was never the same after that. Her days consisted of not much more than Jessica and I ferrying her to the bathroom in a borrowed wheelchair, out to the back hall for a cigarette and back to the couch.

People have always thought it strange that Penny smoked. “That can’t be good for your health.” They’d chide. “Really? I had no idea!” she’d shoot back. I’ve never had much patience for judgmental people, as if anyone really gave a rat’s ass what they thought anyway. Penny smoked because she could. It was the single, solitary, thing in her life that she could control. She enjoyed it. It gave her pleasure, and it was something we could share. In the middle of my busy life, I could always take a break and have a cigarette with her. Those were times when we would check in with each other about the boring details of life responsibilities. I need to pick this up at the drug store. We need to get to this appointment. Sometimes we’d talk about life, the universe and everything. But the times I remember most vividly are the laughs. We had different senses of humor, but when she said something that struck me, I’d be crying with laughter. I remember those giant guffaws with a gentle smile now. But I still crack up at the idea of this feisty little old lady giving ‘what for’ to some judgmental jerk who dared to comment on her smoking.

Wednesday morning was the last time that I could get her to take any medications. I knew her time was short because when I got her dressed after her bathroom trip, she didn’t want to have a cigarette. Instead, it was straight to the couch. She hadn’t had anything to eat in a couple of days, and after her morning meds, she’d stopped drinking her Mountain Dew as well. I know that cigarettes and Mountain Dew aren’t the healthiest diet, but if that’s what she wanted. Who was I to argue? I tried my best to get her to eat or drink something all day Thursday, but she refused. That evening I leaned in and gave her a kiss. “Honey, do you know what’s happening?” I asked. “I’m dying.” She said weakly. “Yes. But you’re not alone. We’re all here with you and we’re going to help you through. I love you, sweetheart.” I tucked her in and Jess and Brianna kissed her goodnight. Those would be the last words she spoke.

Thursday night lasted forever. Falling asleep felt like a chore assigned to me by some cruel taskmaster. I was weary beyond belief and knew that I needed rest, but slumber only came in spurts. I laid awake imagining what Penny was experiencing, wondering why she was so resolute, blaming myself, considering if I could have given her something more to live for, what I could have done differently, regretting the cruel words that I’d spoken in anger or frustration, knowing I could not take them back. And through it all, just wishing it would end. In the morning I spoke with Dr. Moore and described the situation.

“If she’s not taking fluids, she doesn’t have much time left.” He advised. “I know this is hard, but to tell you the truth, she’s had more problems since her last transplant than any of my other patients. She fought the good fight, but she’s just tired of the struggle. It’s time to let her go. Do you want me to order hospice?” “Yes, please.” I responded tentatively having only a vague idea of what that meant. And with that, the wheels started turning. Within a half an hour I got a call from the hospice administrator and we scheduled a meeting to do the paperwork that afternoon.

I can’t talk about hospice without gushing. It’s kind of embarrassing. I feel like a hospice salesman. Everyone involved is just an amazing person, so sensitive and filled with empathy. When the administrative nurse came by that afternoon, she answered all my questions. But I honestly don’t remember anything she said other than, “Sign here. We’ll take care of everything.” And then an overwhelming rush of relief washed over me. I had no idea how much weight I’d been carrying for the last several weeks, but now it was out of my hands. I didn’t have to be the responsible one. I didn’t have to think about what needs to happen now. I no longer had to plan and reprioritize everything in my mind. I could just breathe. It was as if I’d set down a couple of overpacked suitcases and laid down for a nap.

Penny’s hospital bed arrived late the next morning, and around noon her hospice nurse arrived. We got Penny comfortable in the bed with brand new sheets and the dogs hopped up by her side. Dan, her nurse, was an Iraq war veteran who immediately got into the hospice field upon his return from active duty. I would have never imagined that a war-torn vet could be so kind and understanding. He prepared her medications and explained exactly what we needed to do. “Stay with her. Talk to her. She may not respond, but she can hear everything. Her arms may flail uncontrollably for no apparent reason. That’s normal. Just keep her calm and her lips moist. If she gets agitated, give her one of these oral morphine syringes. You’ve got plenty if you need them. Be strong for her. She needs to know that she’s not alone and that she doesn’t have to be afraid. When she passes, call this number and they’ll take care of everything. Call me if you have any questions or concerns or need anything at all. That’s why I’m here. I’ll stop in tomorrow.”

And so, the death watch began. Someone was with her always. Jessica stayed with her while I walked the dogs. As long as I was out, I decided to knock on some of the neighbors’ doors to let them know what was happening. It was February 2nd, Ground Hog’s Day in Minnesota. There was still a lot of snow on the ground. With every door that opened came another conversation filled with shock. They had no idea what we’d been dealing with since the new year began. And then with the news, it became my job to comfort them as well. I found that strangely ironic, but they hadn’t time to get used to the idea at all, so it was understandable.

Everybody in our neighborhood loved Penny. People naturally flocked to her. She would sit on a lawn chair in our front yard with the dogs, smoking cigarettes and enjoying the sunshine. Every passerby it seemed would stop by to chat, complementing her cute dogs. We lived in this house, this neighborhood, for over 20 years and Penny had become kind of an icon. We moved in three weeks before we were married. She loved sitting out front with the dogs so much, that I built her a flagstone patio with my own hands in the Autumn before she died. I had the final stone in the middle engraved, “For My Pennygirl.” It was a labor of love. All the while I was building it, I envisioned her sitting, smiling and smoking, talking with the neighbors. I kept the final stone a secret, and anticipated her reaction with excitement, but when she saw it, her whole demeanor sank. She never said anything, but I think she saw a headstone instead of patio. The footstone foreshadowed the future that neither of us wanted to face. She sat on the patio once before the weather got too cold for her.

At 6:10 pm that evening, Penny passed away. She was surrounded by her family and her dogs, all the people who loved her best. I had been in “project management mode” for so long that I’d hardly given myself time to feel anything. So, when she finally stopped breathing, a flood surged from my body surprising me. I wept violently for a nearly a minute. I didn’t know that I had been holding it in, but when the tears left, the torrent took with it all my fear, guilt, anger and resentments. Leaving only an empty peace. I wasn’t angry at Penny anymore for choosing this path. I didn’t even know that I was angry. I had done my part. I had honored her decision. Letting her go was my final act of love. It was her life and her death. She did both with dignity, and on her terms. Penny wrote in her living will, “I welcome death. I have lived a full life and have no regrets. I do not fear death, but instead embrace it as it is only in death that we find the meaning of our lives.” She died with 30 years clean.

Now I am left trying to figure out how to navigate a world without Penny in it. What am I to do now that I don’t have her to care for? What will my retirement look like? When will I be ready to love and be loved? It’s been a year and a half now. Melancholy and nostalgia still sneak up on me, but less often and without the intensity they once had. The memories of the good times become clearer as the months progress. Irritations, resentments and hurts fade. It’s as if Penny is more alive now than she was when she was actually living. In a way, she is. I get to recreate her in my memories and hold them dear to my heart. I get to choose what to hold on to and what to let go of. What I’m discovering is that I loved her more than I ever knew.

Life trudges forward no matter my protestations. And life must be lived on life’s terms. If nothing else, I am convinced of this undeniable truth. I will figure it all out one day at a time, sometimes one step at a time. Life is a delicate dance of hanging on and letting go.