‘I wish I had known no one would help me’

I am 39 years old. I had to take care of my father, who passed away from cancer in 2019; my mother, who passed away from cancer in November 2021; and since her death I have inherited my grandmother’s care. She is 97, diagnosed with moderate dementia and considered high risk to be left home alone. As of early November 2021, we had applied for Medicaid long-term care to receive home care. She finally got a home health aide in January 2022, but it was a nightmare. They are so desperate for employees that they want to hire anyone. On many random days, she was left without an assistant due to a late call or text message from the assistant who needed the day off and the agencies couldn’t find a replacement in time. I have changed agencies several times. My husband has been a great support throughout. We rely on security cameras we installed in our apartment to see how she is doing while we are at work. How are you doing on a daily basis? It is emotionally and physically exhausting. The healthcare system for the elderly is neglected, broken and inadequate to meet all demands, even basic needs.

Robert Ingenito

44, Public Information Officer, Mamaroneck, NY

My father, who is now 93, had me later in life, at the age of 49. My mother died of cancer when I was 19. Literally on her deathbed she said to me, ‘Don’t put your father in a nursing home. ” Now, at the age of 44, I am married, have a six-year-old daughter and for the past five years my father has lived with us. I work about 20 hours a week, which allowed me to do something other than being his caregiver. If I had to put a price tag on the quality of care I provided my father, it would probably be the equivalent of a high-end residential facility. But it became very difficult for myself, my wife and our daughter. His level of care reached the point of something that I just couldn’t maintain. He couldn’t be left alone. I got no sleep. I recently made the extremely difficult decision to move him to a residential care center. Fortunately, he has the financial resources to do so. For most people, that’s not even an option. I am happy with the level of care he is receiving, but when I signed the lease I felt like I was breaking my promise. I did my best to follow my mother’s wishes. But I could only do so much, and I had to do it.

Karina Ortega

43, caregiver, Dallas

My mother was diagnosed with Alzheimer’s in March 2020, but even before that I knew something was wrong. One day she went to visit a family friend and wanted to donate some clothes. Seven hours later we still hadn’t heard from her. She got lost. Finally she found a supermarket that was familiar to her and came home. I don’t work at all anymore. This has all taken a toll on my life. I have a younger brother and an older sister, but my sister has a daughter in college and my brother has a seven-year-old. I am the only one without children and have always been the one to take care of my parents. What if Mom gets worse and I can’t take care of her? That’s something I struggle with. Put her in a home? This is looked down upon in our culture. I was a rebellious teenager and she never gave up on me, so how am I going to give up on her? I just can’t see it in me to leave my mother because she needs me.

Gay Glenn

61, actor, Topeka, Kan.

It cost us $8,000 out of pocket to have people come to my mother’s house to help her, and that was only eight hours a day. I can only see her savings dwindling. And then she fell. And then overnight she fell again. At the hospital they discovered that she had a cracked sacrum. She was in rehab for the maximum number of days Medicare will cover and was unable to return home. Because she owned a house, two rental properties, had savings and two cars, she had to pay for long-term care costs out of pocket. I think my mother had about $18,000 in the bank. She had five life insurance policies in her children’s names. We have capitalized on the policy. Within a year, she had to pay $65,000 for her nursing home care and spend another $37,000 to qualify for Medicaid. We just sold her house. She passed in October. The state says we are still owed almost $20,000 for the year that Medicaid paid for her nursing home. I moved here in February 2019. I certainly didn’t expect to stay here for another five years. It was horrible – personally all the time, energy and money to do this for her – and it was amazing. I could protect her and make sure everything was okay for her. I said at the memorial service that my mother was there when I took my first breath, and that I was there when she took her last breath. If that isn’t the circle of life, I don’t know what is.

Bryan Ness

62, professor of biology, Angwin, California.

We had it all planned. My mother was coming to live with us. She has some cognitive problems as a result of the stroke. Her entire long-term memory is fine. Her short-term memory simply doesn’t exist. We looked at what it would cost for home care. Even if we limit it to just eight hours a day, it is more expensive than the assisted living facility 10 minutes from our home. It’s a beautiful little place. It’s $4,500 a month. That’s still a lot. She no longer has her own money. There is no more than the $1,500 she gets from Social Security. We talked to the place and got it down to $4,000. I received very good responses from GoFundMe. Many of my former students and friends have put in some pieces. I hate begging for money. In any case, my wife and I are at the age where we no longer have children to support. But we’re afraid we’ll hurt our own retirement savings. My wife is already 65. We also have to maintain our pension plan. They said to us: don’t ruin your own pension because of this. Agreed, but we also have to take care of my mother. We have a family member who gives $500 a month. I’m going to take on some extra work to cover the costs. I felt like my career could end in the next few years, and now I’ve added an $1,800 bill to my finances from now until then.

My mother lived independently. Someone was coming to pick her up in the morning. No one gets paid enough to say, “Come on, you really want to get dressed. Let’s pick out some earrings.’ I should have tried twenty people hoping to find someone who did that. No one is going to waste time with an old person who doesn’t want to do what they don’t want to do. It’s hard to worry about grumpy people when you barely put food on the table. My mother became ill and subsequently had to move into assisted living in a wheelchair. When she sold her apartment, she had about $2,500 a month in retirement and about $120,000 in the bank. That starts to happen quickly when you earn $7,000 or $8,000 a month. Everyone is so worried about people charging her that every time something happened they wanted her to go to the ER. I wish I had known no one would help me. I would have let her live independently and hired people until I found one. Fortunately, my husband and I were both retired. We couldn’t leave the city. We tried it twice and had to come back. Ironically, the last place she was because she was going to run out of money was the best place. The room wasn’t that big, but the staff was the best there. Mom passed away in August 2022.

Jeanette Landin

55, university professor, Brattleboro, Vt.

There were wildfires where my mother lived in California that hit very close to home and caused her health problems. Between that and a series of falls indoors and her inability to drive herself to different places, she finally called in November 2017 and said, “I think I need to come live with you.” We found a home that would meet both my family’s needs and her needs. Her dementia started to get worse. We looked into adult daycare and found a local place. It cost a huge amount of money to do that. But they were good until they got to a point where they contacted me and said she wasn’t following directions, she was refusing to practice appropriate hygiene. This was early 2022 and we had to pull her from that service. In early April she started becoming violent and threatened my husband that she would kill him by cutting off his head. And then she told me she was going to kill my daughters. One evening I had her taken to the hospital and they discovered she had kidney failure. She was still very violent. Placement in a nursing home was considered. Because she was violent, she could not be placed anywhere. They had to send her home with us, and we had to keep her chemically sedated. From the time she came home to the time she died was seven days. We stopped our daughters from coming up. We didn’t want them to hear or see what happened because I wouldn’t want anyone to ever experience that. It was horrible.

Jordan Rau is a senior reporter for KFF Health News, part of the organization formerly known as the Kaiser Family Foundation.