Caregivers worry about lack of resources for long-term care | ET REALITY


I am 39 years old. I had to take care of my father, who died of cancer in 2019; my mother, who passed away in November 2021 from cancer; and since his death I have inherited the care of my grandmother. She is 97 years old, has been diagnosed with moderate dementia, and is considered high risk to be left home alone. We had been applying for Medicaid long term care for a home health aide since early November 2021. We finally got a home health aide in January 2022, but it has been a nightmare. They are so desperate to hire workers that they will take anyone. Left without an assistant on many random days, with a late notice phone call or text from the assistant needing the day off and agencies unable to find a replacement in time. I have changed agencies several times. My husband has been very supportive the entire time. We rely on the security cameras we installed in our apartment to see how he is doing while we are at work. What is day to day like? It is emotionally and physically exhausting. The health care system for seniors is neglected, broken and inadequate to meet any demand, even basic needs.

My father, who is now 93 years old, had me late in my life, at 49 years old. My mother died of cancer when I was 19 years old. Literally on her deathbed, she told me, “Don’t put your father in a nursing home. “Now, at 44 years old, I am married, I have a 6-year-old daughter and my father has been living with us for five years. I work about 20 hours a week, which allowed me to do more than just be her caregiver. If I had That putting a price on the quality of care I provided to my father would probably be the equivalent of a high-end assisted living facility. But it was becoming very difficult for me, my wife and our daughter. His level of care “He was getting to a point that I just couldn’t handle. He couldn’t be left alone. He wasn’t sleeping at all. Recently, I made the extremely difficult decision to move him into an assisted living facility. Fortunately, he has the financial resources to do so. For For most people, that’s not even an option. I’m happy with the level of care you’re getting, but when I signed the lease, I felt like I was breaking my promise. I did my best to follow my mom’s wishes. . But there was much I could do and had to do.

My mother was diagnosed with Alzheimer’s in March 2020, but even before that, she knew something was wrong. One day she went to visit a friend of her family and was going to donate some clothes to her. Seven hours later, we still didn’t hear from her. She got lost. She finally found a supermarket that looked familiar and came home. I’m not working at all anymore. All of this has 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 7-year-old daughter. I am the only one who does not have children and I have always been the one who would 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 it in a house? In our culture, that is looked down upon. I was a rebellious teenager and she never gave up on me, so how can I give up on her? I just can’t see it in me to leave my mom because she needs me.

It was costing us $8,000 out of pocket to have people come to my mom’s house to help her, and that was only eight hours a day. I’m watching her savings just dwindle. And then she fell. And then she fell again during the night. At the hospital they discovered that she had a cracked sacrum. She was in rehab for the maximum number of days that Medicare will cover and she was unable to return home. Because she owned a home, had two rentals, savings and two cars, she had to pay out of pocket for long-term care costs. I think my mom had about $18,000 in the bank. She had five life insurance policies in the names of her children. We charge the policies. In one year, she had to pay $65,000 for her nursing home care and spend an additional $37,000 to be eligible for Medicaid. We just sold her house. She passed away in October. The state says we still owe about $20,000 for the year Medicaid paid for her nursing home. I moved here in February 2019. I certainly didn’t expect to be here for five years. It was horrible (personally, all the time, energy and money to do this for her) and it was great. I was able to protect her and make sure everything was okay for her. I said at the memorial service that my mom was there when I took my first breath and that I was there when she took her last breath. If that’s not the circle of life, I don’t know what is.

We had it all planned. My mom was going to live with us. She has some cognitive problems due to the stroke. All of her long-term memory is fine. Your short-term memory simply does not exist. We looked at what home care would cost. Even if we limited it to just eight hours a day, it’s more expensive than the assisted living place 10 minutes from our house. It’s a wonderful little place. It’s $4,500 a month. That’s still a lot. She ran out of her own money. There is nothing more than the $1,500 she receives from Social Security. We talked to the place and lowered it to $4,000. I received very good responses from GoFundMe. Many of my former students and friends made some contributions. 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’re worried we’re going to hurt our own retirement savings. My wife is already 65 years old. We must also maintain our retirement plan. They told us: Don’t ruin your own retirement because of this. Well, okay, but we have to take care of my mom too. We have a family member who donates $500 a month. I’m going to do extra work to cover the costs. I felt like my career might decline in the next few years, and now I have a $1,800 bill added to my finances going forward.

My mother lived independently. Someone came in the morning to wake her up. No one gets paid enough to say, “Come on, you really want to get dressed. Let’s pick out some earrings.” She should have tried 20 people in hopes of finding one who would do that. No one is going to waste their time with an older 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 mom 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. That starts going fast when you hit $7,000 or $8,000 a month. Everyone is so worried about being sued by people that every time something happened they wanted her to go to the emergency room. I wish I had known that no one was going to help me. She would have kept her in an independent life and hired people until she found one. Fortunately, my husband and I were 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 place. The room was not that big, but the staff was the best there. Mom died in August 2022.

There were wildfires where my mother lived in California that were getting 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 in November 2017 and said, “I think I need to move in with you.” We found a house that would be suitable for both my family and their needs. Her dementia began to worsen. We looked for an adult daycare and found a local place. It was tremendously expensive to do that. But they were good until they got to a point where they contacted me and told me that she was not following instructions and she was refusing to do proper hygiene. This was in early 2022 and we had to remove her from that service. At the beginning of April she started to get violent and she threatened to kill my husband by cutting off his head. And then she told me that she was going to kill my daughters. One night I took her to the hospital and they discovered that she had kidney failure. She was still very violent. They looked into placing her in a nursing home. Due to the fact that she was violent, she could not be located anywhere. They had to send her home with us and we had to keep her chemically sedated. From the time she returned home until she died, seven days passed. We stopped our daughters from going up the stairs. We didn’t want them to hear and see what was happening because it’s not something I would ever want anyone to go through. It was horrible.

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

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