Hospice - Help When the End is Near

MODIFIED TRANSCRIPT for EPISODE 9 : Hospice to Death 

My husband died at home on July 19. From steady decline to dramatic drop to sudden nosedive, to death…that was the pattern. I was prepared for some steps. Others blindsided me. 

I have a lot to share with you. It’s emotionally draining for me to record. It might be hard for you to hear. So I’m going to begin by telling you about what it was like leading up to and entering the hospice program. I had some misconceptions about hospice. Maybe you do, too. 

Hospice…that’s what this episode, #9, is all about. 

In episode 8, I shared details of the 11 falls my husband experienced in May and the first week of June. All of the falls were painful, one could have easily been fatal. Some required help from the EMTs and the emergency room of my local hospital. There were more falls after that. So many, I stopped counting. My normally kind and gentle husband kicked and punched three nurses, bruised my arms, and tried to bite me. It’s all been part of a learning experience. 

The fall that could have killed my husband happened on a Friday evening when I was on my neighbor’s deck. On Saturday morning, one of the visiting nurses from the palliative care team called to follow-up on my husband’s condition. She was concerned that he might have a UTI, urinary tract infection. I agreed, adding I didn’t think I could get a specimen from him. Under the assumption that he did have a UTI, I asked if she could order a prescription for an antibiotic? No. I’d have to call our family doctor. Of course, it was a Saturday and the office was closed. The nurse said she’d make a few calls.  

Fifteen or twenty minutes later, I was on the phone with an on-call service, speaking to a doctor in another part of the state.  

I carried my laptop into the bedroom where Dick was sleeping. I held the camera so the doctor could observe him. She commented on his coloring, his breathing, and a few other things. She saw no indication of sepsis. Still, because of the unwitnessed fall the night before, and the other falls in the weeks prior, he could, indeed, have a UTI.  

I asked if she would prescribe an antibiotic. No. In his condition, if he did have a UTI, it could go to sepsis quickly. An antibiotic in pill form wouldn’t act fast enough. He needed the antibiotic delivered in an IV. The only way that could happen was for him to go to the ER. While we talked, she used another phone and called for an ambulance. 

Dick was still asleep when the EMTs came upstairs. They had to wake him up, and get him downstairs. That was an ordeal all its own. The EMTs wound up strapping Dick to a chair and carrying him down.    

The ambulance took him to the ER. I followed about 20 minutes later. This time, I was not admitted right away as I had been on the previous trip. Instead, I was told to check back at the desk in 15 minutes. I did. Again, I was told to wait, that a nurse would come and get me. 

It was another 20, maybe 30, minutes before the nurse came and I was ushered into the ER, into the room where Dick was lying on a bed, a needle inserted into his right arm to collect blood. I moved to his left side. That’s when I saw the narrow tube running down from under the blanket into a plastic pouch. The nurse explained the tube was to collect urine…so they could check for a UTI.  

I looked at the nurse. “You inserted a catheter?” 

“Just a surface one,” she answered. 

I didn’t realize there were different kinds of catheters. I couldn’t read the look on her face but it wasn’t reassuring. 

Four hours later, the blood work showed his kidney function was normal. But there wasn’t a drop of urine in the bag. 

Right about then, two nurses came in. One stood on Dick’s right side, the other on the right. As one started to remove the needle, the other lifted the blanket to remove the catheter. Dick lashed out in all directions! 

I was standing at the foot of the bed. I dropped my purse so I could hold his feet down. One of the nurses warned me he could turn violent. I asked if that happened earlier when they inserted the catheter. 

Just then, the nurse discovered that Dick had disconnected the catheter from the tube. The nurse still had to remove some kind of tape and what looked like plastic wrap. All this while the other nurse was taking the needle out of his arm. 

In the 46 years my husband and I have been together, I’ve never heard him use the language that spewed out of him now. The nurse told me he’d been so combative when they inserted the surface catheter, they didn’t dare try to insert a deep catheter. In that moment, all I could think was that the surface catheter hadn’t worked. They hadn’t collected any urine. I would have said something but they were out of the room in a flash. 

Thirty minutes or so later, a nurse came in. She said we could go home now, and gave me a prescription for an antibiotic. 

Dick could barely stand so an aide helped me get him to the car. We were less than a mile from home when he said he had to pee. I flew the rest of the way home. 

We pulled into the driveway. I have Mark and Angel on speed dial. We all live in the same building. They’re just two doors down. I called them and they came right over. Keep in mind this was a Saturday evening. They were going out to dinner with friends and were all dressed up. 

I asked them to help me get Dick into the house. They did. I asked if they would help me get him into the bathroom. They did. They held him up so he wouldn’t fall, while I helped him direct his stream. They continued to hold him up while I mopped up puddles that didn’t make the target. 

In my wildest imagination, I never thought I’d be sharing such intimacies with my neighbors! Both of these men had lost their moms in recent years. They had a good idea of what Dick and I were going through. 

I’ve told you about my neighbor Carol. She lives right next door. When Mark and Angel’s friend came to pick them up for dinner, Carol walked over to the friend’s car and explained that … that Mark and Angel would be a few minutes late…because they were… doing a good deed. 

Just before Mark and Angel left for dinner, they asked if I wanted help getting Dick up the stairs to the bedroom. I said no, that we’d sleep downstairs. Dick could have the couch. I’d use the recliner. A few hours later, I realized the recliner isn’t good for anything more than a quick nap. And the couch isn’t big enough for two…and it doesn’t have a railing that would keep Dick from falling off. Morning couldn’t come soon enough. 

Ah, but at 11 o’clock that night, Mark called me. He and Angel had just gotten home. Did I need any help?  Yes! Please!  They came right over and helped me get Dick up the stairs. By that point, Dick’s legs were strong, no hint of a wobble. That was Saturday night, June 11. 

Sunday was relatively calm. Dick came down the stairs on his own. At 6 pm, he went up the stairs on his own. We both slept. 

On Monday, June 13, a palliative care nurse came over to check on Dick after the trip to the ER. She asked me to clarify a note from the ER that said, “Wife refused recommended meds.” What?!!! I hadn’t refused any meds. If anything, I had expressed frustration at how difficult it had been to get a prescription for an antibiotic. I added that we eventually got the Rx and that my neighbor drove to the pharmacy to get it filled right away. The nurse said she’d make sure the record was revised.  

I asked about hospital beds. We didn’t need one yet but I knew the time was coming. The nurse said that since Dick wasn’t in hospice yet, our insurance wouldn’t cover a bed.

Later that day, my neighbor Helen came over. I told her I have a twin bed stored in the basement. She helped me form a plan for how I could set the bed up in the dining room, move some other furniture around, and set up my sewing in the living room. In the end, I felt better knowing that even if I couldn’t get a hospital bed, I had a perfectly good bed my husband could use when the time came that he could no longer climb the stairs. The idea of hospice seemed far away.    

A week later, on June 20, the palliative care nurse measured Dick’s right arm and right calf and compared the totals from those taken three weeks ago. His arm had gone from 24.5 inches to 23.  His calf had decreased from 34 inches to 31. Since there was no way we were going to get Dick on a scale, the measurements were an indication of weight loss. 

The next day, June 21, Dick fell against a heavy antique bench in the living room next to the stairs. The EMTs came and took him to the ER for the 2nd time. He had X-rays and a CT scan. His ribs weren’t broken but they were definitely bruised. 

The palliative care nurse came the next day and talked to me about the hospice program. Both the palliative care program and the hospice program strive to keep the patient comfortable. But there comes a point when the medical professionals agree that, in all likelihood, the patient has less than six months to live. At that point, the palliative care team steps aside and the hospice care team steps in.

Like the palliative team, the hospice team wants to keep the patient comfortable and out of the hospital. But the hospice team recognizes that as the patient goes on the journey toward death, the family will need some education and a lot of support. That support can come in the form of equipment, nurses, aides, and supplies. Support can also come from social workers and chaplains. 

I could certainly see the value of having hospice involved in Dick’s care. I just didn’t really think we were there yet. Even if I did, moving him into hospice wasn’t up to me, at least not yet. The palliative care nurse had to make a report to the physician on the hospice team. The physician had to talk with the neurologist who had been caring for Dick these last six years. 

Fortunately, Dick had just seen the neurologist a couple of weeks earlier. I talked about that in episode 8. Turns out, they all agreed my husband was likely to die sometime in the next six months. Once they agreed, the decision to involve hospice in my husband’s care was mine. 

As I quickly learned, there are various forms of hospice care. Some are for-profit, some are nonprofit. There are facilities built specifically for hospice care. Some hospitals have rooms set aside for hospice care. And there are organizations, like the Visiting Nurses, who work with the family to provide hospice care in the patient’s home. Check out what’s available in your area. Ask at your local senior center. They usually have a lot of resources to share. 

Medical insurance for hospice is another topic. I don’t know the whole picture. I only know that, in my husband’s  case, Medicare covered the hospice care provided in our home –  not the services of the CNA who came two mornings a week. That was a private hire I had arranged last December through a home health agency. 

Understand that bringing in hospice care didn’t mean my husband would die in six months. It meant death in six months was likely. Sometimes, a patient stays on hospice longer than six months. My understanding is that a patient can continue to stay on hospice as long as the patient’s health continues to decline. 

Sometimes, a patient’s health improves. A study in 2018 by the National Hospice and Palliative Care Organization showed that approximately 6.3% of hospice care patients improved to the point of being discharged from the hospice program. 

Of course, using that study as an example, 93.7% percent of patients in hospice care, die in hospice care. That’s not an alarming statistic. It's reassuring. It means the hospice professionals recognize the signs. And you want professionals who can recognize the signs because they can help you!  

Which brings me to a misconception about hospice. Contrary to what I’ve heard a few people suggest, hospice care does not hasten death. Hospice is a business. They stay in business by caring for their patients, not by killing them. The nature of hospice leads them to employ a lot of competent, compassionate medical professionals. These professionals are not volunteers. …Hospice is a business.  

I want to say right up front…I don’t know how all the various hospice programs work. In my husband’s case, if Medicare was covering the cost of the nurses and aides coming into our home, Medicare would not cover the cost for my husband to see outside medical providers.

For instance, once Dick was officially enrolled in hospice, if I wanted him to see our family doctor, I would have to pay out-of-pocket. I would have to pay for Dick to see his cardiologist, ophthalmologist, podiatrist, neurologist, all of which Medicare would normally cover. 

I’m okay with Medicare’s policy. If they’re paying for medical professionals in the hospice program, they aren’t going to pay for the same medical professionals outside the program, too. But hospice – at least the hospice organization I chose – doesn’t have a podiatrist. My husband had a toenail problem. I had to find a podiatrist who made house calls and I had to pay out-of-pocket. 

Maybe when it comes to hospice, Medicare covers only what it considers essential. I don’t know. … I’m not complaining. What Medicare covered in the hospice program was far beyond what I expected! I just want you to know you have to make a list of all the various medical care providers your loved one saw over the last year. You have to ask questions. 

On June 22, Erin, the palliative care nurse went over the hospice policies with me so I could make an informed decision. 

I knew that if I placed Dick in hospice care, I would need to be diligent in helping him eat, shower, get dressed, and use the bathroom.  

I knew that placing Dick in hospice also meant I could keep him at home with me. He could live out however many months he had in our home where he could eat food he liked, watch the birds, take a nap in his recliner, snuggle with me on the couch, and on good days, walk with me around our condo circle. 

I also knew that if I chose not to place Dick in hospice, I wouldn’t have the kind of medical team I’d need to keep him out of the hospital. It wasn’t unrealistic at all for him to wind up in a nursing home. If we had another Covid shutdown, I might not be able to see him. Ever.

I told Erin I wanted to place Dick in the hospice program. She and the other nurse who had been caring for him  would make a report to the hospice doctor who would, in turn, talk with Dick’s neurologist. 

Four days later, Sunday June 29, I cleared some space on my dining room table and sat there with a hospice nurse, Eileen. She went over the program with me again. I signed the paperwork.  

She suggested I get a hospital bed as soon as possible. It would make things a lot safer for Dick. The bed could be here in a few days and I could have it set up wherever I wanted. 

I had my sewing machine in the dining room in front of the window, overlooking the meadow. I’ve been sewing almost daily for at least six months – shawls, scarves, drawstring treasure bags, kitchen linens – things I could see to completion in a few hours. As Eileen sat there, the dining room table was piled with assorted linen and lace. 

I told Eileen I planned to put away most of my sewing and move just the machine and a few small projects into the living room. That way, I could place the hospital bed in the dining room. She looked at the placement of furniture and offered an alternative. Turns out Eileen is a quilter, has 5 sewing machines, and totally understands the therapeutic value of sewing. With compassion, she added, "It's only temporary." 

She went upstairs to examine Dick, check his vitals and confirm he was wearing the neon orange DNR-DNI bracelet. He barely flinched. That entire day, he got up twice to use the bathroom. Other than that, he slept all day. 

I told Eileen I’d let her know about the bed. Looking back, ordering the bed was the logical thing to do. I just wasn’t ready. In our 41 year marriage, Dick had gone hiking and I’d gone to writers’ conferences. Other than those times, we had always slept next to each other. Like synchronized swimmers, we followed a dance choreographed at first by placing pillows and blankets, and as the night went on, by my hand on his shoulder or his arm around my waist. When he’d have a nightmare and scream, I’d lay so that my heart was on top of his. “It’s okay, Babe. Just let your heart follow my heart.” …  Once I set up a hospital bed, there would be no going back. … If ever I needed a ritual for our marriage, it was now.  

Before Eileen left, I asked her if I could be exaggerating...if my imagination could be interpreting what I see in a way that's more dramatic than reality. I knew that Pamela, the CNA who comes twice a week, always wrote in her logbook that Dick was alert, could walk a little bit, had a good appetite. But she saw Dick only in the morning, not later in the day when everything goes downhill… I write fiction. Was I doing that now? 

Eileen said I was not imagining or exaggerating. The weight loss, the excessive sleeping, the diminished appetite, the increased hallucinations, the delusions, the early signs of a swallowing problem, and the FALLS -- they all paint the picture of end-of-life transition. 

Two days later, a car pulled into the driveway. Hand-delivery of the hospice “comfort pack.” Inside a cardboard box about 6 inches square, maybe a little bigger, were medications for pain, agitation, nausea, constipation, breathing problems, and more. There wasn’t a lot of any one thing but there was enough of everything in case of an emergency. The box needed to be stored in the refrigerator. 

The next day, June 29, I met Donna, the hospice nurse who would help Dick and me on the rest of the journey. One of the first things she did was explain the contents of the comfort pack. She prefilled five syringes with liquid morphine and showed me how to administer them. 

I asked Donna to order the hospital bed. It came two days later, July 1. I went with my original plan and had it set up in the dining room, positioned so that Dick could look out the same window I did when I was sewing. I put away most of my linen and lace and kept out just enough to keep me grounded. 

Dick was curious about the bed and chose to take a nap on it that day. It was surprisingly easy to get him to sleep on it that night. I slept nearby on the couch in the living room.  

In the early morning hours of July 2, I heard Dick get up. He peed all over the bathroom floor. Repeat on July 3. On July 4, he peed around the front door and then in front of the refrigerator door. On the morning of July 5, he got up and peed on the bathroom floor and in front of the stove. In those four days, I went through several rolls of paper towels and half a bottle of Resolve Urine Destroyer. 

On that last day, July 5, while I was cleaning the kitchen floor, Dick walked into the living room and fell against the coffee table. It’s made of wood with an iron base and a slate top. Heavy. He was hurting. I managed to get him up and back into bed. As instructed, I called the Visiting Nurses to report the fall. 

Donna, the hospice nurse, came over. She gave Dick the first dose of morphine, then filled more syringes so I’d have them for later. 

Dick slept peacefully for several hours. When he woke up, he ate a little yogurt mixed with ice cream. Lately, he’d cough a little when eating. Now he coughed when drinking. Nothing major. I would never have associated that kind of cough with difficulty swallowing. Donna explained that the muscles in Dick’s throat were having trouble remembering how to swallow. That’s why so many people with Alzheimer’s choke to death. 

Constipation became a problem again. His abdomen was hard. I’d been giving him warm prune juice and magnesium citrate to no effect. On July 7, while Pamela, the CNA was here to help, Donna gave Dick a suppository. There was some movement over the next few hours but the full effect didn’t come until that night. Dick got to the bathroom once, but not in time. I got him cleaned up and we headed back to the bed. He fell.  As I had done so many times before, I called Mark and Angel. They came right over, helped me stabilize Dick and helped me change the sheets.  

Dick had more bowel movements that night but he didn’t get out of bed. Fortunately, Pamela had taught me how to layer several soaker pads beneath my husband and how to use two kinds of disposable undergarments at the same time to minimize cleanup. We all made it through the night. 

Pamela came the next morning, July 8. While she sat in her usual chair in the living room, Dick sat directly across the room in the transport wheelchair. He liked to rock. Didn’t matter that the wheelchair wasn’t a rocking chair. He tipped it back and forth, back and forth, the way you sometimes see cowboys in movies rock a chair in a saloon. And suddenly, he tipped the chair all the way back! You’d need an Olympic stopwatch to measure how fast Pamela moved across the room. She caught the wheelchair before it hit the ground. 

Over the next few days, Dick ate less and less. On July 11, our 41st wedding anniversary, I fixed his favorite meal: hot dogs and beans. He took one bite. Didn’t want any more. 

He had scraped his wrist when he fell against the coffee table. The wound had gotten worse, not better. Same for a scrape on his knee. His skin was breaking down. 

His agitation was going up. The hospice doctor increased his medication. 

That same day, July 11, Dick climbed over the railing on the hospice bed and walked up the stairs. He wanted to use “his” bathroom. My neighbor Helen was here. She helped me get him and the bathroom cleaned up. He had spent so much effort getting up the stairs he was now shaking. 

I called Angel. He and Helen managed to get Dick down the stairs. He nearly collapsed several times. Each time, Angel talked to him calmly, encouraged him gently. At the bottom of the stairs, Dick did collapse. Angel had to lower him to the floor. I grabbed a pillow and put it under his head. We waited a good ten minutes. And then somehow the signals from Dick’s brain to his legs came through. Angel helped him get up. They walked to the bed. 

Dick fell again on July 12. Again, Angel came to help me get him up. 

On July 13, a hospice aide, Louie, came to give Dick a sponge bath. Dick’s agitation spiked that afternoon. He climbed out of bed – that means over the railings – and made it to the bathroom. He fell again. This time, I had to call the EMTs. They helped me get him back into bed. 

That same day, I made calls to all of Dick’s medical care providers – our family doctor, our dentist, ophthalmologist, cardiologist. I canceled the annual appointments we had on the calendar and left the message that Dick was now in hospice and wouldn’t be coming in to see them. That task was harder than I thought it would be. 

At 3:45 on the morning of July 14, he got up, fell and hit his head against the bed. I called Donna. She got in touch with the hospice doctor. Another adjustment in meds. 

On the morning of July 16, I crushed Dick’s meds and put them in his favorite lemon pudding. He coughed more than he ever had before. There was more mucus than before. He was becoming agitated. 

I had been instructed to call the nurse whenever I noticed a change. I called. She said it sounded like he was aspirating. From now on, he could have liquids only, including his meds. 

Fortunately, there was a liquid version of his meds in the hospice comfort pack. I filled a syringe as I’d been instructed and squirted the liquid into the corner of my husband’s mouth. He relaxed. 

On July 17, I officiated a baby blessing on a private lake in a nearby town. This was the couple’s second child. I had officiated the baby blessing several years ago for their first child. That Sunday, I was away from home for not quite three hours. Pamela, the CNA who had been helping me since December, had arranged her schedule so that she could stay with Dick. They had a good relationship. And, more importantly, she knew what to do in an emergency. 

As you listen to this, you know that my husband died on July 19. But, on the 17th, he’d been in the hospice program only 3 weeks. I thought surely we had a few more months together. Recording this episode with the benefit of hindsight, I can really see how fast things changed. 

He grew restless that Sunday night. Where he was usually cold, now he was kicking off the blanket, flinging one leg over the bed railing. He didn’t have a fever. I used the oral sponges on sticks to moisten his lips, and placed a cool facecloth on his forehead. There was no eye contact. I tried, but his gaze was fixed, as though looking right through me and out into the meadow. 

His breathing grew labored. I called the nurse on night duty to ask if I could give him morphine on top of the medication I had already given him for agitation. Yes. I could. So I did. 

On Monday morning, July 18, I called the funeral home I planned to use when the time came. I didn’t want to be in a position of making important decisions during a time of emotional crisis. Yeah. I still thought I had time. 

Donna, the hospice nurse, came over. She had been away for the weekend and had just seen the note about my call. She pointed out how Dick’s stomach was heaving up and down. It indicated that breathing had become painful. I gave him morphine. 

She looked at his feet, his legs, his knees. When Dick went into the hospice program, the nurse, Eileen, gave me a green folder full of information. It was sitting on the kitchen table. Donna pulled out a slender, blue brochure. Had I read it? No. I hadn’t. She handed it to me. The Final Journey: A Guide to Understanding the Dying Process.  

“You do see how he has deteriorated over the weekend?” 

“Yes,” I answered. It was impossible not to see. 

She took a breath, the settling kind a person takes before delivering bad news. “It’s time to call your daughter and other family members. If they want to see your husband alive, they need to come soon.” 

“Soon. What is soon?” I braced myself for her to say two days, maybe just one. 

“Four to five hours.” 

…I’m going to end this episode here. That’s because everything that happened next feels like a final chapter … And because you already know that my husband died that night.  

You’ll want to take notes on the next episode. It’s about those last hours and the funeral and burial that followed. I’ll share what felt like an endless list of decisions to be made and tasks to be managed. I’ve accomplished a lot but, even now, the list is still long. 

Please bear with me a minute. If you know

• A family caregiver for someone with dementia,  
• A caregiver whose spouse has dementia, 
• Friends and family of dementia caregivers,

please tell them about the podcast. 

And if there’s someone you wish knew what you’re going through – and I’m pretty sure there is – ask them to listen to the podcast. It might help that person help you.  

My podcast is free and you don’t need a smart phone. Just go to the website: MySpouseHasDementia.com. You can listen right there. You’ll see that triangle  “play” button. 

Before I end this episode, I want to say thank-you to Robin, an educator in Florida. She has emailed me several times, sending emotional support and sharing a bit of the dementia journey she and her husband are on. She’s where I was several years ago. 

Hearing from Robin and other listeners like her is motivating. You see, this was never a podcast I planned to create. It’s a podcast I feel called to create. I still do. Even though my husband has died, I still have a lot to share with you. 

If you want to tell me about the dementia journey you’re on, send an email. The address is <zita@myspousehasdementia.com>.  No one sees my email but me.  

Finally, when I say take good care of yourself – I mean drink a lot of water, walk - even if it’s just around your home, up and down stairs, do what you can to get a good night’s sleep. Take naps if you can. Stay away from sugar. More than once, I’ve heard Alzheimer’s called Diabetes Type 3. …. So, yes, when I say take good care of yourself, those words aren’t fluffy. They’re fierce. We need to survive.