Why Did My Husband Have to Die Alone? A Pandemic vs. Alzheimer’s Disease

This is a story about my journey and my experiences with my husband who was diagnosed with early onset Alzheimer's at about the age of 64. The struggles were many and often very difficult. It starts with the heartbreak of getting this terrible diagnosis till the time I had to place him into a nursing facility then the struggles of adding a pandemic outbreak added to the mix.

I hope the story will benefit those going through the same thing or something similar to gain some insight into this terrible disease as well as a pandemic that has never been seen in the modern world.

My name is Pam. I am a 64-year-old woman that recently became widowed. My husband and I were married for 40 years. To your young people 40 years sounds like a long time, and it is, however it seemed to fly by in the blink of an eye. We have 3 children together as well as 3 grandchildren and as of this writing our 1st great grandchild is expected in December of 2020.

At about the age of 64 my husband started showing signs of dementia. There were many signs such as the obvious which is forgetfulness. Not just forgetting days or dates or names but also forgetting where he was or where he was supposed to go, etc.  It started to become steadily worse over time. I began to worry and decided it was time to see the doctor.

His doctor sent him to a neurologist and he was tested and it was found that he was indeed suffering from dementia and we were told it would get worse over time. It was then discovered that his dementia was categorized as Alzheimer's. This was devastating.  At that point I was determined to keep him home. We had done this many, many years ago for his mother as she also had Alzheimer's. We had decided to keep her home as we felt this was in her best interests.  She stayed home until her passing at the age of 74.

Once again, I am faced with this disease but now it's my husband and I also felt that it would be in his best interests to keep him home. After all I got to know what to expect and what to do and when. So, my journey starts here. It began easily enough or so it seemed. As the disease progressed, I found it harder and harder to deal with this as he was my husband not my mother in law and yes there is a big difference.

Fast forward to 2018. It now becomes much harder and once he started to get out of the home, I was terrified as he would not have known how to get back in or even know where we lived and should that happen he would be the next day's news and I could not do that. Now I had to make the very hard decision to place him in a nursing home and that was yet again a devastating milestone. Though it was very tough in the beginning he did become familiar with the routine and was pleasantly kept active and engaged which was very important for someone with this disease.  Even though it was hard to leave him there I started to feel a little better as time went on because I felt he was safer and had better care then I could give him and that was a good thing.

Now we fast forward once again too March of 2020. At this time there was a pandemic that started that was called the Coronavirus or for short Covid-19. This is world-wide and has never been seen in the modern world. This Coronavirus has thrown every one's life into turmoil. There is no normal anymore. This pandemic has caused nursing homes to close down and not allow visitors because of course these people are all the most vulnerable population.

There is no visiting any family members that are residents in nursing homes. We are kept in the dark most of the time as they become severely understaffed as they also are getting sick.

Now this is where it gets so unbearable for those families of residents. We become frantic and that just adds more anxiety on top of everything else. You already have a sense of guilt for leaving your loved one in a nursing facility and now you have a pandemic that is keeping you from seeing your loved one and you have no idea when this is going to end or even if your loved one may get sick and possibly die from this but what can you do. You hang on to every bit of information that you can get and just hope and pray that your loved one will survive this.

Now, it is July and it has been four months since I last saw my husband. I was able to call him every day which was at least something. Now I am being told that he has stopped eating and hardly drinks anything. He has also stopped answering his phone for the past two weeks. This is very scary because I know what this means. It means it's the beginning of the end as it was the same for his mother.

I keep calling and asking the Social Worker to let me see him. He needs to see me as I do him. However, what I am told is shocking. I am told that I cannot come to see him unless he is "in the act of dying"! What!! How can they say that? How can you possibly justify that statement? How can you take that kind of answer? All I could do was keep calling and keep telling them that I need to see him now and not when he's literally at death's door. They claim that you are only allowed to see your loved one in special circumstances. If this isn't classified as being special circumstances then I don't know what is, and they just keep telling me the same thing over and over again.

This is my beef...the employees of nursing homes go into those facilities everyday 24/7. Now all have protocols in place to protect themselves as well as residents and coworkers. While these employees are not working, they are in contact with family members and friends, and these people are in contact with more people, etc. So, tell me why I can't follow those same protocols as the employees do? I was even willing to sign a waiver releasing them from any responsibility should I become sick. But even that didn't help.

I am now frantically trying to find some way to see him. I start to email whoever I think can help. I email the two Senators in our district, and I email AARP because I know they are advocates for the older population and they would know what to do. Unfortunately, it was on the weekend so I had to wait till Monday before anyone would be in touch. And, someone did. I received a call from AARP-NH. She told me how sorry she was that I was going through this and that she was going to help anyway she could. I was elated. I thought, finally someone who is listening and someone who was going to help. This was finally going to happen. Well, think again!

On Monday, July 6th, got a call from AARP.  Later that evening, around 7 pm, I received a call from my husband's hospice nurse. She told me that I needed to go and see him asap as he was now in the act of dying. I thought this was the most devastating news I could get and I wasn't sure I was going to be able to handle it. After all this time, this was in fact the only way I was going to see him after all. I went immediately to the nursing home. I rang the bell and was let in. I did have a mask on as this was required and with good reason. My temp was taken and I was asked a few questions one of which was why was I there.  I told the person about the call I received from hospice and just like that I was let in. I didn't know whether to be grateful or irate considering everything.  Maybe a little of both.

I got to his room and when I walked into it, I got the shock of my life.  Here was the love of my life lying there looking so thin, so weak that it brought instant tears. I dried them quick because the last thing I wanted was to cause him the least bit of stress.  I sat there for a long time just talking to him and letting him know I loved him. He could barely speak and even when he did it was garbled. Then something amazing happened. He opened his eyes, looked at me and said "wow, I love you"! I was so overcome I just wanted to burst into tears but I didn't.  You see, even though I saw him most every day before the pandemic, he would say that as if it was the first time I had visited and, after not hearing those words for a long time, he said it and quite clearly. It was music to my ears. I left late that night.

On Tuesday, July 7th, I got a call from someone who was with the nursing home division of DHHS, (Department of Health and Human Services). This was getting escalated and I was so glad. This time, I was going to make it in to see him. Well that is not how it worked out.

I went to the nursing home quite early, about 7 am. I got in there the same way I got in the night before. Now, I live with my daughter and she was away. She had been at her best friends, which is a 2-hour drive from us. I had called her late the night before to tell her about her father. She told me that she would leave early in the morning to get back in order to see him.

When she got there, she called me to let me know. I went downstairs to get her in but wanted to ask the nursing supervisor to make sure it was ok. I was told she was in a meeting but right at the same time, she came out as the meeting had ended. I saw her and she saw me and the next thing I know there were a few people surrounding me. They all seemed to be talking at the same time asking me why was I here? How did I get in? Etc... I told them about the call and what followed. All of a sudden, they are telling me that I wasn't supposed to be there, that I needed to call ahead and make a n appointment and I could only stay for 15 minutes. What? I couldn't believe what I was hearing. How do you do that? Are you supposed to guess when a person is supposed to die? How do you 'make an appointment ' for that? They allowed me back to see him but again, I only had 15 minutes. However, my daughter did not get to see him that day. Then they set up an 11am appointment for the next day.

At about 6:45am on Wednesday, July 8th, I got a call from the nursing home. My husband was gone. I couldn't breathe for a minute.  My mind was trying to fathom what I was being told. How could this be? I had an appointment to see him this morning! After I hung up, I had to tell my daughter. Later on, in the day, after I had made my calls and made the appointment to go to the funeral home to make the arrangements, I realized something. On July 8th, 1984, my mother passed away at the age of 54. Now, this date will never be a good day.

Conclusion

The reason I wrote this story is actually twofold. I started it as a way to try and cope with my sorrow. I have not been able to begin grieving for my husband yet but this is a start.

The other reason I did it was that I do hope this can help someone else. To let them know they are not alone.

Most of all, I want to send a message to those that are going through this that you need to strongly advocate for your loved one as they can't and they depend on you to be able to have the best quality of life they should have in their declining years.

Also remember, no one deserves to be alone at the end of life.

When Their Mother Died at a Nursing Home, 2 Detectives Wanted Answers

The sisters were used to getting information. But the Isabella Geriatric Center was secretive about the virus outbreak from the beginning.

By John Leland

• June 4, 2020

A little after 1 in the afternoon, Aida Pabey got the call from the nursing home: Her mother was not going to make it. It was April 6, nearly four weeks after the state had barred all visitors to nursing homes, and Aida and her sister, Haydee, had been struggling to get even the most basic information about their mother. Was she eating? Had the coronavirus reached her part of the home?

Now this dire call. Just the day before, the sisters had been assured by an aide that their mother was “fine.”

They were both detectives in the New York Police Department, 20-year veterans. They were used to getting information, even from people determined to withhold it. But the nursing home had been a black box.

They raced to the home. Haydee got there first and managed to get upstairs. Aida, arriving second, identified herself as a crime scene investigator and brought safety gear. “I had my face shield, my bootees, my mask, my gloves,” she said. The security guard refused to let her in. “No. It was, ‘No way.’”

Their mother, Elba, died that night. But it took the sisters nearly a month before they learned how bad things were at the Isabella Geriatric Center in Manhattan, where more than 100 residents have died, possibly the most pandemic deaths of any nursing home in the state.

The sisters still do not know how she deteriorated in those last days, and what was done to protect her, because the home has not released her medical records.

The Pabey sisters’ story — two experienced police officers unable to crack the silences of their mother’s nursing home — is a parable of corporate fog in the time of Covid-19. As nursing homes have been overrun by the virus, accounting for half of all deaths in some states, families say they have been kept in the dark, barred by law from visiting and given incomplete or contradictory information by the homes’ administrators.

The detectives’ forensic tools were useless to the sisters — there was no evidence they could examine, no witnesses they could interrogate.

The home declined a request to discuss how the virus got in and how it overran measures to contain it. Audrey Waters, a spokeswoman for Isabella, said the home had followed all state guidelines in battling the virus and informing families, adding: “We have worked tirelessly to prevent this deadly and ferocious virus from spreading in our nursing home, and we are committed to doing everything in our power to continue to limit its spread and protect our residents and heroic staff.”

For Aida Pabey, the frustration of those last weeks has only escalated. “I feel betrayed,” she said. “My mom is gone, but I want to do whatever it takes so that this doesn’t ever happen ever again.”

Isabella Geriatric Center is a 705-bed nonprofit home in Upper Manhattan, with an overall “average” rating from Medicare, though it received below-average scores for staffing and health citations. The Pabey sisters chose it reluctantly, after it became clear that their mother could no longer live with her eldest daughter.

Aida Pabey had bounced around — military service in Germany, twins, divorce, a stint living in a domestic-violence shelter — and her mother had moved with her for support. Aida joined the police force in 2000, trailing her sister by six months, and later moved her family an hour and a half north, to Walden, N.Y. Elba eventually became part of this home.

Six years ago, things got difficult. Elba would wander from the house, or get confused and call 911 to say someone was hurting her. One time she went out carrying a knife. She was just 65 or 66, but she needed more care than Aida could give her.

“That’s where Isabella came in,” Aida said.

Families of residents from that time, including the Pabey sisters, describe the home as a relatively nurturing environment, filled with dedicated staff.

Some of that changed after 2017, when the home became part of the Brooklyn-based nonprofit MJHS, formerly Metropolitan Jewish Health System, several families and employees said.

“Nursing is compassion,” said a nurse who has been at Isabella for more than a decade, speaking on condition of anonymity for fear of being fired — a fear that runs throughout the industry. The new administration, she said, put more emphasis on containing costs.

Before the state banned visitors to New York nursing homes on March 12, the sisters would stop in to spend time with their mother several times a week, singing with her or bringing food. Nurses on the staff knew Elba as the singer, with no gray hair.

Family visits are a crucial part of any nursing home. They provide essential emotional care and relieve the staff of time-consuming tasks. Without visitors, Isabella’s already-stretched staff had more work to do, and the virus multiplied their duties — more washing, more arranging video calls with family, more labor-intensive meal service, as homes ended group meals.

These visits also provide checks against abuse or neglect. All that ended on March 12. No longer could the sisters get information for themselves.

Meanwhile, the nurses and aides at Isabella were getting sick. Fill-ins from outside agencies often worked at multiple homes, increasing the chances of bringing the virus in.

Personal protective equipment was scarce, according to two nurses, and employees handled both Covid and non-Covid residents, creating avenues for the virus to spread. To keep the staff from misusing protective gear or taking it home, the administration rationed gowns, face shields and hand sanitizer, the nurses said. They each got one N95 mask per week, for which they had to sign, one of the nurses said. It was dangerous work: “I got my son sick,” the nurse said.

Ms. Waters, the spokeswoman at Isabella, said that the home always had enough protective gear, and that it followed Health Department guidelines for conserving P.P.E. Nonetheless, Covid had come to Isabella. Ms. Waters said the first resident to get sick was sent to the hospital for testing on March 21. The first confirmed death among residents was on March 25. That day, the home posted on its website that some residents had tested positive.

But earlier, in late February or early March, according to a nurse, a cluster of residents in one unit had developed fevers and coughs. Soon after, the unit’s licensed practical nurse, Ian Wilson, was hospitalized with respiratory failure and had to be put on a ventilator; he died of the coronavirus on April 1.

The families of Isabella residents knew none of this. “I did not get one call to say the virus was in the home,” said Melody Jenkins, who said she had no contact with her mother between March 15 and March 26, when she was alarmed to see that the aide on the video call with her mother was not wearing a mask. Her mother, Adrienne Blackett, died two weeks later.

The Pabey sisters were also unaware that residents and staff were getting sick, but video calls arranged by the staff gave them pause. They could see their mother’s roommate wandering around the room, sometimes touching their mother or her things, also without a mask.

On March 24, a Twitter account using the name NYCStrong posted that there was an outbreak at Isabella.

MJHS’s Twitter account promptly replied that there was no outbreak. Then on March 27, the Pabeys said, their video calls stopped.

When the sisters asked about their mother, it was hard to get more than bland assurances. “They’d just say, ‘She’s good,’” Haydee said. Often they could not reach anyone at all.

Ms. Waters said that throughout the pandemic, “staff was often in residents’ rooms providing care, making it difficult for them to take calls.”

By then, the virus was spreading within the home, according to the two nurses. “They kept it private for various reasons,” one said. Because the home had very limited access to testing, administrators could not tell which residents or staff members had the virus and were spreading it.

“We knew that residents were passing away,” the nurse said. “We knew that staff were getting sick. All I could tell you is that we were just hoping it’d come out on the news so someone could give us the help that we are receiving right now.”

The home encouraged nurses who were not too sick to come to work, the two nurses said. “If you didn’t present symptoms, even if you tested positive, you were supposed to work,” one said. “It happened to a lot of us. We worked.”

Ms. Waters said the home followed guidelines from the Health Department regarding when employees could work.

The home’s website posted no updates on infections. When the sisters got through to the staff, Haydee said, “They said, ‘She’s fine.’”

Then on April 5, when Aida called for an update, the aide answered distractedly, even getting her mother’s gender wrong. “She said, ‘He’s fine, his respiration is good,’” Aida recalled.

This was too much. She demanded the aide’s name. The aide snapped, “‘Why are you asking my name, we’re all stressed here,’” and hung up the phone, Aida said.

Then the following day, Isabella called to say that Elba was not going to make it. The home posed a question to the sisters: Should they call an ambulance to take their mother to the hospital, or should they try to simply make her comfortable? Call an ambulance, they said. Then they changed their minds.

Haydee got there first and was told she could not enter, but she fell in with the paramedic team that was already heading to her mother’s room.

Aida arrived soon after with full protective gear but was stopped at the security desk. The state’s ban on visitors instructed homes to make an exception for residents at the end of life. But the guard would not let her pass.

Aida felt betrayed. She and her sister were risking exposure to the virus every day; they had lost friends and colleagues. Her twins, now 29, were also on the police force, risking their lives. “We're Puerto Rican blue blood,” she said. Now Aida was denied a final visit with her mother.

Meanwhile, the scene in her mother’s room upstairs was a mess. Two nurses were unable to insert an IV in her mother’s arm, so they left the needles sitting on her bed. Haydee was astonished to see her mother’s roommate still in the room, exposed.

Elba’s eyes were closed, and she was having difficulty breathing. Haydee called her sister using FaceTime, and from the lobby Aida was able to sing to her mother one last time. Elba Pabey died that night, at age 72, just one day after the staff had said she was “fine.” The death certificate, Haydee said, cited “natural causes” and did not mention Covid-19.

“I don’t believe that,” she said. “Especially after speaking to the doctor, who said he was shocked at how quickly Mom died from this virus. And he agreed that she was in generally good health. I know she did not die of natural causes.”

Isabella may have a shocking number of deaths, but it was hammered by a virus that it was unable to control. Ms. Waters said the death toll was not exceptional given the home’s size and its significant hospice population, which was particularly vulnerable. As at other homes with high death numbers, its residents are predominantly African-American or Latino; the surrounding neighborhood, Washington Heights, has the highest infection rate in Manhattan.

For the Pabey sisters, the weeks after their mother’s death felt like a rolling insult. On April 17 the state Health Department released death counts at individual nursing homes, citing 13 at Isabella. But this number was misleadingly low. It included only confirmed Covid-19 deaths at the home, omitting residents who died without being tested and those who died in a hospital. The actual death toll was much higher.

Then, a day later, the home for the first time informed families of Covid deaths, reporting on its website that 70 residents had died, either confirmed or presumed to have been as a result of the virus. Then, two days after that, it revised its figure again, omitting suspected deaths; the total was now 32 dead. But the next two bulletins removed the death counts entirely, until finally on May 1, after a report on the cable news channel NY1, it released a staggering count: 98 deaths among Isabella residents.

Since then, at least eight more residents have died.

After a complaint from Adriano Espaillat, a congressman from Washington Heights, the state attorney general is looking into whether there were violations at the home. Inspectors from the state Health Department spent three days in the home, citing it for deficient infection control, including inappropriate use of protective equipment and not following state guidance on cohorting, or grouping infected residents together — both essential measures during a pandemic.

Chris Burch, whose father died of the virus on April 10, said he watched the changing accounts and was “devastated,” because he had always found the home to be forthcoming with information.

“I never asked about coronavirus, because they had always been straight up with me,” he said. “But going from 13 to 98 — somebody’s hiding stuff. There’s people suffering like me.”

Even now, the true death toll at Isabella is not available to the public. The state Health Department would confirm only the 68 who died at the home, omitting residents who died at hospitals. Ms. Waters declined to give a total.

Haydee Pabey also filed a complaint with the attorney general. She still does not have her mother’s medical records, she said, because the home told her she had to request them from the court system.

On that final visit, Haydee removed a bracelet from her mother’s wrist to give to her sister. It was a small consolation, she knew. “I didn’t visit as law enforcement,” Haydee said of those last moments. “I visited as a little girl. We couldn’t fight this for my mother.”

Aida felt defeated. “I feel I failed her,” she said.

“All we wanted to know is, What happened?” Aida said. “Why did it happen? These are questions that forensic investigators ask. But something as simple as asking, ‘What happened to our mom? What did not happen? What did you do? What did you not do?’ That was just left out. We still don’t know. And our mom is gone. That’s the problem.”

John Leland, a Metro reporter, joined The Times in 2000. His most recent book is “Happiness Is a Choice You Make: Lessons From a Year Among the Oldest Old,” based on a Times series. @johnleland