Death Watch
He was taken sooner than we expected
A little over a year ago, Uncle Harold came to live with us. He was then almost 85 years old, with multiple chronic illnesses, primary of which was his kidney disease. Besides that, he had atrial fibrillation, COPD, diabetes, lymphedema, and a myriad of other ailments. The first year here, he was able to do most things by himself and was self-sufficient to a fault. He walked unassisted around the house, using a cane or sometimes a walker if we were going to be walking a distance. We were not allowed to help put his walker in the trunk, getting a curt “I’ll do it myself” or “I don’t want your help.”
Because he had lived his entire adult life as a bachelor, he did everything he needed to do and shunned help from everyone. Since he was here, he’s cooked his own breakfast every day, took his own medications, and fed and walked the dog in the backyard.
But lately, we’d noticed at first subtle, and soon more recently obvious, changes to his behavior and his abilities. He fell asleep in the middle of conversations, during dinner, and always in the car on the way to doctor appointments. He became more forgetful, not remembering what was told to him just a few minutes before. He forgot to come out for dinner when called. His speech, never easy to follow because he stuttered, was garbled and often unintelligible. He fell frequently and hurt himself, causing open wounds that, because he was on a blood thinner, poured out blood and didn’t heal easily.
So, when he asked to be taken to the ER because he was concerned about a wound on his leg, I wanted the doctor to know about all of his other issues. They were so concerned about these other things that he was admitted to the hospital.
One evening while he was hospitalized, I got a phone call from his inpatient physician asking to meet the following day with Uncle and me. I was worried because she sounded so serious.
The following day, at 1:00, Uncle and I sat in his room waiting for the doctor. He was quiet and I think it was because he was nervous. He was troubled that they had discovered that his “new” behavior indicated something serious.
When Dr. R finally arrived, she talked with us for a while about his condition, emphasizing that he was never going to improve and would continue to go downhill, at first slowly and then more rapidly. She suggested that Uncle begin home hospice care in order to make his last months (she told us that he had probably only six months to a year more) more comfortable. And she noted that it would make my life easier because I wouldn’t have to take him to doctor appointments several times a week, as I was doing. She answered Uncle’s questions: Would I be in pain? Would I die in the house? What about all my medications?
She said that he would likely die from his kidney disease and that is a painless disease. Unless we were unable to care for him at home between nurse visits, he could die at home. And, she explained that medications that were considered “curative” would be withheld, administering only “comfort” medications. So, all his kidney medications (regulating his potassium, his anemia, his creatinine) would stop. But, he would continue his heart medications, his constipation medications, and anything for any malady that caused pain would be continued.
She arranged for the hospice coordinator to meet with us the following day, and then he could be discharged home.
When we met with Tracey, the Trinity Hospice Facilitator, it was love at first sight — me because she exuded such a warm, caring, comforting vibe, and Uncle because she was a fisherman (although he doesn’t consider lake fishing “real” fishing). She explained the hospice procedure — he would be discharged to home with a nurse coming the next day to do an intake evaluation. That nurse would then determine how many days a week he would be visited by a nurse, an aide to assist him in showering, a social worker, and a chaplain (who Uncle said would be unnecessary). She would also check his medications and decide which he didn’t need to take any longer.
Once again, needing continued reassurances, he asked, “Will I be in pain?” Tracey told him he would go home with pain medications, including morphine, to manage any pain he might have.
After Tracey left, Uncle was quiet for a minute, then looked at my husband, Larry, and me and said, “I was afraid of dying. I’m not afraid anymore.”
After Uncle Harold agreed to home hospice care, he almost immediately began thinking that his time was up. The first thing he had me do was send a text to all of his friends saying, “I wanted to fill you in on what’s going on. I’m currently in the hospital, and because my kidney disease is soon to be end-stage, I have chosen to enter the home hospice program. My niece will be in touch. I’ll see you whenever.” He became very fatalistic.
Although he had been told that he would likely have six months to a year more, he acted as if we were going to put him in the ground tomorrow. He was discharged from the hospital on December 6, and until his final hospital admission on December 28, he never wore anything but his bathrobe and a pair of underwear. He refused to get dressed to go out of the house, saying that he had no clothes or there was really no reason. We gave him reasons: breakfast at Leo’s with “burned, burned, burned” hash browns, a ride to our son David’s house, or a Chanukah party with the family at Sarah’s house.
But nothing enticed him from his bedroom and his too-loud television. He barely moved, even to go to the bathroom. He began to pee into a plastic container in his room and dump the urine into a bucket that he would empty once a day — or whenever I emptied it. He asked that all his Snapple, chocolate protein drinks, and “munchies” be stored in his room, so he didn’t have to leave the bedroom to go into the kitchen. His room began to stink.
Uncle had been a bachelor almost his entire life and was always very self-sufficient. Even when he came to live with us, we were not allowed to do anything for him unless he asked. Now, however, as his will to live diminished, he asked us to do almost everything. “Jannie, get me a glass full of ice.” “Jannie, do you have my medicine?” “Jannie, I lost the remote again. Will you look for it?” Larry got the dirty work. He would call him if he picked at a scab and started bleeding! “Larry, I’m bleeding all over the carpet.” There was never a please, thank you or I’m sorry I put you out. He had never learned the niceties of politeness, and I expected his rudeness. Larry did mind, though, because his “jobs” were disgusting!
The hospice nurses came twice a week to check on him and change the several bandages from his gaping wounds. They would also ask him about his mental condition — was he depressed, anxious, suicidal? He always answered no, but he once asked the nurse if being in hospice care and not taking curative medications was sort of like suicide. He was torn between wanting to take care of himself and wanting to die now that he felt the end was near.
One afternoon I mentioned to the nurse that he hadn’t been dressed or out of the house in about three weeks. She asked him if he was depressed, and when he denied it, she said, “I notice that every time I come, you’re in your bathrobe. Are you getting dressed? Are you going out? Are you visiting family?”
He said, “No, I’m not depressed, but I have no clothes.”
“Well,” she countered, “I know that you used to go out before I started coming around, and you must have had clothes for that.”
He didn’t know how to respond and just waved her off. He said, “I’m not depressed. I just don’t want to go out,” and left it at that.
But she pushed on, “Your mental attitude would be better if you spent time with family or went to a restaurant and bothered the wait staff!” Even that didn’t tempt him, though.
The day after that nurse visit, Larry and I went out to get him one of the medications he was still on. We decided, since we had been in the house with him for several days without a break, that we would take a short ride. The phone rang while we were driving towards home.
“Uhm ome, Uhm ome.”
“Uncle, are you saying ‘come home’? What’s wrong?”
“Yeh, uhm ome. I fell. I it my ead.”
“Uncle, I’m calling for an ambulance. Be calm.”
I called 911 and gave them all the information, including our garage code so they could get into the house if they got there before us. When we arrived home, the EMTs were giving him a shower because he had soiled himself and the floor. He was able to move on his own but was in a great deal of pain. He had hit his head on the corner between the wall and the cabinet, and his body had been twisted in an uncomfortable position. We all agreed that, since he hit his head, he should be transported to the hospital. He could barely move and didn’t want the EMTs to assist him getting onto the stretcher. He yelled at them in Uncle Harold fashion, “Let me do it. Don’t touch me.”
We met him in the emergency room about a half hour later. He had a CT scan from his head to his lower back. There was no bleeding in his brain or other head injuries; his spine was not broken, but he had three fractured ribs that were causing him terrific pain. The resident thought about discharging him home, but we were adamant that we would be unable to care for him. He sleeps in a recliner chair and couldn’t move without pain, and we didn’t see how we could move him and tend to his needs or even get him into the car for the ride home. They gave him some morphine and admitted him. We went home.
The following morning, we went to visit him, expecting him to be his old curmudgeonly self. But he slept through the entire visit until we left in the late afternoon. He didn’t wake for his meals, or when the nurses tried to turn him, he cried out in agony. When we went down to the cafeteria for some food, I kissed him and told him we would be back, but there was no response. Sarah and David both visited, but it seemed he had no idea that they were there.
That afternoon, the doctor came to see him and recommended to us that he be moved to a hospice facility. He didn’t think we’d be able to take care of him at home either. More importantly, he thought Uncle had less than a week to live. I couldn’t believe it! We had just, three weeks prior, been told he had six months to a year. Now he was given a prognosis of less than a week.
The same hospice coordinator that arranged for home hospice came again, and between her and the hospital social worker, arrangements were made to move him two days later to an inpatient hospice bed.
When we left the hospital that evening, I kissed him goodbye and whispered, “I love you, Unk. Do you love me?” Without opening his eyes, he gently nodded his head yes.
On New Year’s Eve, Uncle was moved to Angela Hospice. The admitting nurse reviewed all his symptoms and told Larry and me that he was in the active stage of dying, the third and final stage. He had only about a day or two to live.
When we went into his room to see him, he had an oxygen mask over his nose and mouth. It was bothering him, and in his drug-induced sleep, he kept pulling it off. I asked the nurse to remove it because he was suffering with it.
We sat with him for a few hours, quietly watched the Michigan football game on TV, and then left. As we were getting closer to the house, I got a phone call from hospice, and my heart stopped. But the nurse was only calling to say that his oxygen level had dropped to 70%, and they began oxygen again. They gave him a nasal cannula rather than the mask, and he seemed to be tolerating that better.
I couldn’t sleep that night. My mind was spinning, and I was feeling guilty because I couldn’t shed any tears, as sad as I was. I finally fell asleep around 4 am. At 6:15, the phone rang, and this time it wasn’t good news. Uncle had passed away at 6:10 am on New Year’s Day, far less than the six months to a year we had been “promised.”
