“I wish I knew no one was going to help me.”

I am 39 years old. I had to take care of my father, who died of cancer in 2019; my mother, who died in November 2021 from cancer; and since her passing, I have inherited my grandmother’s care. She is 97 years old, has moderate dementia and is considered at high risk for being home alone. We had been applying for Medicaid long-term care for in-home assistance since early November 2021. She finally got in-home assistance in January 2022, but it was a nightmare. They are so desperate to hire workers that they will take anyone. She found herself without help on random days, with a late phone call or text from help needing the day off and agencies not being able to find a replacement in time. I changed agencies several times. My husband has been a great support to me throughout this adventure. We rely on the security cameras we have installed in our apartment to see how she is doing while we are at work. How does it work on a daily basis? It’s emotionally and physically exhausting. The healthcare system for the elderly is neglected, failing and unable to meet all demands, even basic needs.

Robert Ingénito

44, public information officer, Mamaroneck, NY

My father, who is now 93, had me late in life, at 49. My mother died of cancer when I was 19. Literally on her deathbed, she told me, “Don’t put your father in a nursing home. » Today, at 44, I am married, I have a 6-year-old daughter and for five years, my father has lived with us. I work about 20 hours a week, which has allowed me to do something other than being his caregiver. If I had to rate the quality of care I provide to my father, it would probably be the equivalent of a high-end assisted living facility. But it was getting really difficult for me, my wife and our daughter. His level of care was reaching a point that I just couldn’t stand. He couldn’t be alone. I wasn’t sleeping. Recently, I made the extremely difficult decision to place him in an assisted living facility. Fortunately, he has the financial resources to do so. For most people, that’s not even an option. I have been 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 there was only so much I could do and I had to do it.

Karine Ortega

43 years old, caregiver, Dallas

My mother was diagnosed with Alzheimer’s disease in March 2020, but even before that, I knew something was wrong. One day, she went to visit a family friend and was going to donate some clothes to him. Seven hours later, we still hadn’t heard from her. She got lost. Finally, she found a familiar supermarket and returned home. I don’t work at all anymore. All of this has had a detrimental impact on my life. I have a younger brother and an older sister, but my sister has a daughter who is in college and my brother has a 7 year old daughter. I am the only one who does not have children and I have always been the one who took care of my parents. What if mom’s condition gets worse and I can’t take care of her? This is something I struggle with. Put her in a house? In our culture, it is looked down upon. 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 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 it was only for eight hours a day. I see his savings dwindling. And then she fell. And then it fell again overnight. At the hospital, they discovered she had a crack in her sacrum. She was in rehab for the maximum number of days covered by Medicare and could not return home. Because she owned a home, had two rentals, savings and two cars, she had to pay long-term care costs out of pocket. I think my mother had about $18,000 in the bank. She held five life insurance policies in her children’s names. We cashed in the policies. In one year, she had to pay $65,000 for her nursing home care and spend another $37,000 to qualify for Medicaid. We just sold his house. She died in October. The state says we still owe almost $20,000 from the year Medicaid paid for her nursing home. I moved here in February 2019. I definitely didn’t expect to stay here for five years. It was horrible – personally, all the time and energy and money it took to do that for her – and it was great. I was able to protect her and make sure everything was okay with her. I said at the memorial service that my mother was there when I took my first breath, and I was there when she took her last breath. If that’s not the circle of life, I don’t know what is.

Brian Ness

62, biology teacher, Angwin, California.

We had everything planned. My mother was going to live with us. She has cognitive problems because of her stroke. All of his long-term memory is fine. His short-term memory is simply non-existent. We looked at what home care would cost. Even if we limit it to eight hours a day, it costs more than the assisted living facility 10 minutes from our house. It’s a wonderful little place. That’s $4,500 a month. That’s still a lot. She has no more money. There’s no more than the $1,500 she receives from Social Security. We talked to the place and got it down to $4,000. I have received very good responses from GoFundMe. Many of my former students and friends put on some songs. I hate begging for money. My wife and I are at least at the age where we no longer have children to support. But we worry about hurting our own retirement savings. My wife is already 65 years old. We also need to maintain our retirement plan. They told us: don’t ruin your retirement because of this. Well, okay, but we also have to take care of my mother. We have a relative who gives $500 a month. I will be doing additional work to cover costs. I felt like my career might end within the next few years, and now I have an $1,800 bill added to my finances between now and then.

My mother lived independently. I had someone come in the morning to wake her up. No one gets paid enough to say, “Now come on, you really want to get dressed.” Let’s choose some earrings. I should have tried 20 people in hopes of finding one who did this. No one will waste time on an older person who doesn’t want to do what they don’t want to do. It’s hard to care about grumpy people when you barely put food on the table. My mother got sick and then had to be in a wheelchair in an assisted living facility. When she sold her condo, she had about $2,500 a month in retirement and about $120,000 in the bank. It starts to go fast when you hit $7,000 or $8,000 a month. Everyone is so afraid of being sued that every time something happens they want her to go to the emergency room. I wish I knew no one was going to help me. I would have kept her independent living and hired people until I found one. Fortunately, my husband and I were both retired. We couldn’t leave the city. We tried twice and had to come back. Ironically, the last place she was, because she was going to run out of money, was the best. The room wasn’t as big, but the staff was the best. Mom passed away in August 2022.

Jeanette Landin

55 years old, university professor, Brattleboro, Vermont.

There were wildfires where my mother lived in California that were coming very close and causing her health problems. Between that and a series of falls at home and her inability to drive to different places, she finally called him in November 2017 and said, “I think I need to come live with you.” We found a home that would suit my family and their needs. His dementia began to worsen. We looked for adult daycare and found a local place. It was extremely expensive. But they were good until it got to the point where they contacted me and said she wasn’t following instructions, she was refusing to do proper hygiene. It was early 2022 and we had to remove her from this service. In early April, she started becoming violent and threatened to kill my husband by cutting off his head. And then she told me she was going to kill my daughters. One night I took her to the hospital and they discovered she was in kidney failure. She was always very violent. They considered placement in a retirement home. Because of her violence, she could not be placed anywhere. They had to send her home and we had to keep her chemically sedated. From the time she came home to the time she died, seven days passed. We stopped our daughters from going upstairs. We didn’t want them to hear and see what was happening because it’s not something I would want anyone to experience. It was horrible.

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