My Caregiver Friend Died First

I have a story I don’t want to tell you. It’s a cautionary tale about a dear friend. Three weeks ago, she became a statistic…the one about caregivers who die first. 

Three weeks ago also marked a year since my husband died. I’m learning to integrate memories of the past with plans for the future. I’ll share some thoughts about that, too. That’s what this episode, #16, is all about.  

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You’re listening to My Spouse Has Dementia, a podcast that uses personal stories, occasional interviews, and simple rituals to support dementia caregiving spouses. My goal is to help us SURVIVE. … because about 40% of us die first. I’m Zita Christian, writer, Life-Cycle Celebrant, widow. My husband had Alzheimer’s.

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One Sunday in April, my friend Lucy (not her real name) had a stroke. She was my age. For over 30 years, Lucy and I and our friend Sharon had been writing critique partners. Except for the years I was taking care of my husband, the three of us met weekly at an area bookstore. We shared our writing and got feedback to make it better. We talked about the publishing world and did our best to keep up with the changes. Lucy had written 17 novels – historical romance, women’s fiction, and most recently, a contemporary mystery, most published by traditional publishing houses, one by a small press. 

On the outside, Lucy was quiet, unassuming, an introvert who shunned attention. On the inside, she was like the rare jungle orchids she wrote about in one of her books, or the spunky, snarky amateur sleuth in one of her other books.  

Over the years, Lucy’s husband has suffered from anxiety and depression, sometimes so severe he needed to be hospitalized.  

Back in April, two days before she had the stroke, Lucy called me on Friday morning to say she wouldn’t be coming to critique group that day. She had slept on her arm the wrong way and now it felt funny. She planned to call her doctor. I was tempted to suggest she get in the shower, roll her shoulders, shake the sleep out of her arm. But I didn’t say it. If Lucy felt the need to see her doctor, that was her business. Plus, maybe there was something more going on.   

Two days later, Lucy’s childhood friend – I’ll call her Blaire – came to see Lucy and to bring her a thermometer. Lucy didn’t have one and thought she might have a fever. Lucy had not called her doctor. 

Blaire found Lucy on the living room floor. Lucy’s husband was trying –awkwardly, frantically – to get Lucy dressed. She was unresponsive. Blaire convinced the husband to call an ambulance. 

Sharon and I knew Lucy had serious health issues. We thought they were under control or in remission. That’s what Lucy always told us.  

We thought Lucy’s husband was doing well, that the most recent setback he experienced a few years ago when he retired was no longer a serious concern. We thought he and Lucy were enjoying retirement. That’s what Lucy always told us.  

But, as Sharon and I would eventually learn, Lucy hadn’t been upfront with us. I won’t say Lucy lied. I think she had been deceiving herself. 

Lucy spent the next six weeks or so in the hospital. She had radiation for an abscess in her shoulder (the arm pain) … and dialysis three times a week for her kidneys. Dialysis? This was the first time I had heard anything about her kidneys! Her husband and I were standing at Lucy’s bedside when she comforted her husband, assuring him that the dialysis was temporary. Pretty soon she could go home. Everything would be fine. 

Twice during the weeks that followed, Lucy’s husband checked himself into the psychiatric unit at the same hospital. Both times, he checked himself out the next day. He told me he couldn’t stand all the noise, the lights, the people. 

On Saturday of Mother’s Day weekend, Lucy’s husband had a serious episode. Blaire had come to the house earlier that month to write out checks and pay bills. That Saturday, she called to check up on him. She found him in a state of high anxiety, gasping for air, pleading for help. She tried to calm him but he hung up on her. 

Blaire and I each live an hour away. I won’t go into the step-by-step of what happened next except to say I called the state police, got Lucy on the call, explained the situation, and, with Lucy’s agreement, asked the officer to do a wellness check. 

Lucy’s husband was admitted to a psychiatric hospital. Not long after that, Lucy was transferred to a rehab center. Over the next two months, we spoke almost every day, sometimes multiple times a day. Lucy was making progress, getting stronger every day, able to stand for a few minutes longer each time, walk a few more inches each time. She said she’d be going home in three weeks. 

Shortly after Lucy arrived at the rehab facility, the social worker and the social worker at the mental hospital arranged for Lucy and her husband to have a video call. The way Lucy described it, the call was very emotional. She and her husband would celebrate their 50th anniversary in the fall. It had to be hard seeing each other now, each of them so incapacitated, so vulnerable. 

Later, I would learn that Leslie’s husband blamed himself because she was sick. He refused to accept her phone calls. He spiraled into a dark place. 

One day, Lucy asked me if I could drive her to her house. She wanted to get her laptop, her cell phone, her address book, her passwords, her purse, and her own shampoo.  I said yes, as long as I could get Sharon to go with us. I was in physical therapy for my foot (that’s another story) and I knew I might need help getting Lucy up the five steep steps to her door. 

I also needed to get a key to the house. Lucy’s key was in her purse, and it was in the house. So I went to see her husband. He gave me his key. He said he wanted to set things right with Lucy. I suggested he begin by picking up the phone when she calls, something she does every day. He said he just couldn’t talk to her. He was convinced he had ruined their lives.

When I left, I called Sharon to let her know I had a key. She was eager to help. She and I made plans to bring Lucy home, get her personal items, and then take her out to lunch. We set a date for Sunday, July 9. 

Sharon drove to my house. Together, we went to the rehab center. On the three previous days, I had asked Lucy to make sure she could leave the facility. She assured me she could, saying that patients often left for several hours to spend time with their families. I said I wasn’t questioning the policy. I wanted to be sure she was healthy enough to leave. Lucy was adamant. There would be no problem. 

There was a problem. When Sharon and I arrived, Lucy said she couldn’t go. She had to have physical therapy. On Sunday? Yes. Something about a change in her primary nurse’s schedule that weekend. 

I thought for a moment.  Maybe PT could be scheduled for late in the afternoon, giving us all enough time to at least go to the house. We’d reschedule lunch. 

Sharon and I went to talk to the nurse at the main desk. 

I asked the question and the scheduling nurse looked at me, wide-eyed. 

“Lucy?” 

“Yes,” I said. 

She hesitated. “Just a minute.” 

Moments later, we met Lucy’s primary nurse who said, “How can I help you girls?”  We told her the plan, adding that I had my husband’s transport chair in the car, and that Sharon had once been a CNA, though that was back in high school. 

The nurse shook her head. “Lucy can’t leave the building.” I bristled. “Why not?” I could hear The Eagles singing “Hotel California.” 

As it turned out, there was nothing nefarious. Just serious. Very serious. The nurse said that Lucy is a “two assist.” 

A what? 

The nurse explained. Lucy needs two aids to help her with any movement – getting out of bed, getting in and out of a wheelchair, getting on and off the toilet. 

I pushed back. “There’s some mistake. Lucy has been getting stronger every day. She can stand longer than ever, walk farther than ever.”

“Yes,” the nurse said, “but only with the assistance of two aids.” 

“No. She’s going home in three weeks. … We’re going to change the sheets, spruce things up, stock the refrigerator.” 

The nurse shook her head. “Lucy’s assessment of her progress is optimistic, not realistic.” 

That was the moment Sharon and I learned the truth. 

Plan B. Sharon and I went to the house. We would pick up the items. What we hadn’t thought about was that the house had been vacant for two months. In the refrigerator, vegetables had liquified. A half-empty gallon of milk was swollen to the point of exploding. The kitchen counter was covered with dirty dishes. Mice feces were everywhere. 

Sharon and I spent four hours in 90-degree heat, cleaning what we could. We used bleach. Straight. We filled three big garbage bags. We gathered the items on Lucy’s list and some warm clothing the nurse said Lucy needed. 

As we were gathering the last of the items, I found what read like a suicide note. I recognized the handwriting. I took the note with me.  

Back at the rehab center, we went through the items with Lucy. I explained that we couldn’t stay long. A storm was coming … and I had three big garbage bags in my trunk. 

It wasn’t until we were back in the car that Sharon and I both commented on how swollen Lucy’s legs and feet were. Her abdomen, too. She looked six months pregnant. 

That was Sunday. On Monday, I took the note to the facility where Lucy’s husband was. I spoke with his nurse and his social worker. I gave them the note. They assured me the sentiment in the note was not new to them. 

On Friday, Lucy was admitted to the hospital. Kidney failure. That night, Lucy told me she was dying. She had refused dialysis. When I spoke with her on Saturday, she was adamant. No more dialysis. She asked me to call her husband and tell him everything was okay. … And, no, they had not spoken in weeks. He continued to refuse her calls. 

Sharon and I went to see Lucy the following Tuesday. We waited in the hallway, just outside the door. A short while later, a doctor and another hospital employee came out. The doctor explained that dialysis is challenging for anyone, and that for some people, like Lucy, dialysis can feel like torture. 

Then two adults came out. They were Leslie’s cousins. I had managed to find a third cousin. She lived out-of-state. For health reasons, she couldn’t travel but, thank goodness, that didn’t stop her from taking charge of the situation. 

Fortunately, the cousin and Lucy had always been close.  She called Lucy every day to help keep up her spirits. She was shocked when I revealed the truth of the situation. She, too, thought Lucy was going home soon. 

I gave the cousin’s contact information to the hospital. She was the one who got in touch with the other cousins who were leaving the room when Sharon and I arrived. 

As soon as we heard the other person in the room speak, we knew it was Lucy’s childhood friend, Blaire. She and I had met over the phone and talked frequently. We had more in common than our friendship with Lucy. My husband had died from Alzheimer’s a year ago. Blaire’s husband had died from Parkinson’s six months ago. 

Blaire, Sharon, and I stayed at Lucy’s bedside. Where denial might have played a role in her past, reality ruled now. Lucy knew she had only a few days, at most. She knew her husband was in a safe place and was being cared for. 

Lucy drifted in and out of sleep. When she did talk, her words were garbled…. Except just before we left, when she said, slowly and clearly, “Bye-bye, friends. Bye-bye, friends.” Then she slept. 

That was Tuesday. One year earlier, on Tuesday, I was at my husband’s bedside. He died in the wee hours of Wednesday morning. Lucy died on Saturday morning. 

I’m not at liberty to tell you the whole story. What I can say is that for years, Lucy took care of everything at home. Her husband couldn’t go grocery shopping by himself, couldn’t handle any of the banking, couldn’t write a check. When Lucy inherited a new car from a relative, Lucy wouldn’t let her husband drive it. Not because she was possessive … but because the fancy dashboard confused him. 

It was only after Lucy had the stroke that Sharon and I learned how challenged Lucy’s husband had become in recent years. I remember telling Sharon my sober realization: Lucy had been in the role of caregiver for almost three years. And we didn’t know it. 

Would things have turned out differently if she had confided in us? I don’t know. … What I do know is that Lucy was a family caregiver who died first. 

There are plenty of statistics about the mortality rate of family caregivers.  I don’t know what the latest numbers are. I just know my friend shouldered a heavy burden for years, especially the last three years. And now she’s gone. 

… In the previous episode, I talked about the importance of joining a support group. Even if the group is online, even if all you do is lurk…it can help to know that other caregivers share your fears and frustrations. When you hear a woman say her husband urinated on the oven door because he thought it was a toilet…and you know what that’s like, you relate in a way that is specific. 

Or, a son talks about how his family went to a restaurant. His father, an elderly man with late-stage Alzheimer’s, angrily insists on eating something he shouldn’t. And then the son has to get his father to the men’s room before he vomits. They don’t make it. This isn’t the first time. 

Hearing these stories isn’t about how misery loves company. No. It’s about seeing how someone else handled the situation. It’s learning what to do, or not do. It’s a kind of  “social proof.” We need it. 

Caregiver stress is real. If you have not already done so, please, please make sure you have a will. Make sure you write down what kind of life-saving measures you want and what kind you refuse. Make sure you designated someone to have your power of attorney to follow your wishes should you become incapacitated. Because if you do become incapacitated and someone needs to make life-altering decisions for you, the spouse you’re caring for might not be the person you want in that role. 

For most family dementia caregivers, we learn as we go. We make mistakes. We try again.  

When we survive, we face new challenges. That’s where I am now. I survived the first year. The reality of my “new normal” is sobering. Yes, I have freedom. This is the first time in my 75 years that I’ve lived alone. But I didn’t get married to have freedom. I got married because I loved a man. I wanted to share my life with him. That’s what I did for 41 years and 8 days. 

I still love that man. I still share my life with him. I talk to him every day. I still cry. But the other day I ordered a pizza – without his green peppers. Progress? I guess. But it still hurts. 

I’m telling you this because chances are good that someone you know is grieving. You might think, oh yes, so-and-so’s husband or wife died but that was a couple of years ago. 

It still hurts. 

And here’s the thing about losing a spouse because of Alzheimer’s or some other form of dementia. We experience what’s called “anticipatory grief.”  It can hit years before the actual death – because we know what’s coming. That’s another reason to find a support group. It can help a lot to see fellow caregivers survive. 

One day not long ago, I was sitting on my neighbor’s deck. I cry easily when I’m with Helen. Her husband died almost 19 years ago. She gets it. I’d had a particularly hard few days. I’d been cleaning the garage – trying to, anyway – something Dick and I always did together.  I sat there on Helen’s deck, staring into the woods. And then she said the words I now say to myself every day:  Just keep living until you feel alive again.

So that’s what I’m doing. That’s what I want you to do. Just keep living until you feel alive again. 

In the meantime, if you know someone who is caring for a spouse with dementia, tell that person about this podcast. Go to MySpouseHasDementia.com. Click on the picture for this episode - #16. When you do, you’ll get a play button. You’ll also see buttons to subscribe, also called “follow.” 

Finally, when I say take good care of yourself, those words aren’t fluffy. They’re fierce. We need to survive. 

Thanks for listening.