Can they do that!! Lori cried. ” Where is the compassion? What am I supposed to do now?”
Most people have probably never given this much thought. They assume that once they place someone in a nursing home, the home will continue to care for them until the last day. Unfortunately, that’s not always the case.
Lori found out the hard way. Lori and her mom cared for her dad who had Parkinson’s disease. It was a long journey. When Mom started having problems, there simply wasn’t any money left. Lori’s mother had dementia, diabetes and a host of other problems. It was not the kind of job that one person could do and Lori seemed to be the only one stepping up to the plate.
So she placed her in a nursing home after qualifying her for Medicaid. It was pretty much the only option. They tried Medicaid home care for a while but that didn’t work out. Medicaid pays very low wages. So the quality of the person that was being sent to her home- well let’s just say it wasn’t the best. On top of that, many times, they didn’t even show up.
“I couldn’t count on them”, Lori told me. “I still have to work. I can’t be worrying about what’s going on at Mom’s house when I can’t be there.”
As often happens in families, Lori’s brothers and sisters were too busy with their own lives to help out. So Lori made the difficult decision to place mom in a nursing home. “There just didn’t seem to be any other solution!”, Lori cried. Medicaid beds in Houston are often in high demand. She wanted someplace close so that she could visit often. As her advocate, Lori knew that she was still going to have to be very involved. She just didn’t know how involved she was going to have to be. She felt blessed to find a bed in a facility close by. But the blessings were short lived.
“It was a nightmare! There was never enough caregivers. And if I wasn’t there I know Mom would have gotten any care at all. I usually helped feed the lady that shared a room with Mom. The caregivers would put the food in front of her as if she could eat it herself. She’d had a stroke and was unable to eat unassisted. But I can’t totally blame the caregivers. They’re caring for so many people. And I also know that they get low wages too. Some of them work two jobs to make ends meet. So on top of having too many people to care for they are also often sleep deprived.”
On numerous occasions, Lori’s mom ended up in the hospital. Lack of care on the nursing homes part was usually the reason. Diabetics are prone to infections. As such infections that got out of control would land her in the hospital often. One time, Lori decided she’d had enough.
Finding A New Nursing Home
She wanted to switch mom to a new nursing home in hopes that she might get better care. This was the time to do it. Her mom was getting ready to be discharged. As such she would need rehabilitation care. Since Medicare would pay for that it made it easier to make the switch. A new nursing home would be happy to get those Medicare dollars. So she contacted several nursing homes in the area and the one that she was interested in came out to assess her mother.
Mom would be going to the nursing home on Medicare benefits. She needed some rehab after her Hospital stay and Medicare would pay for a short period of rehabilitation. The nursing home agreed that after her Rehabilitation she could have a permanent room as a Medicaid patient.
Lori was thrilled. The new nursing home was close to home. It looked much cleaner and more updated than the last one. And from what she could see, the care seemed to be pretty good. Oh, she knew should still have to stop by, after all, she was moms advocate. But she had high hope for a brighter future for her mother. So the transfer was made.
Adjusting To Change Is Often Difficult
As is common, Lori’s mother had some difficulty adjusting to the new place. She moved from one nursing home to the hospital and now to a new nursing home. Someone with dementia has a lot of difficulty with change. So Lori was there helping her mother acclimate.
The Money Ran Out
But when the Medicare dollars ran out the nursing home administrator called her in. “We can’t continue to care for your mom”, she told her. She’s got dementia and she’s upsetting the other patients with her constant hollering.”
Lori was shocked. They had assessed her mom in the hospital. “They knew she had dementia!” Lori said. In fact, when the case manager came to assess her, mom was hollering, as usual, help me help me. It’s a typical cry people with dementia often have. They’re frightened and they just want reassurance.
And Now Here They Were Kicking Her Out.
Lori discovered the reason why. Nursing homes get up paid a lot higher dollar for Medicare patients than they do for Medicaid patients. Though they have to take some Medicaid patients they really prefer not to.
By Law, there are 6 reasons that allow for transfer or discharge of a patient.
- The resident needs a higher level of care;
- The resident no longer needs nursing facility care;
- The resident has endangered others’ safety;
- The resident endangers other residents’ health;
- A failure to pay; or
- The SNF is closing.
The Reason They Used
And Lori’s case the nursing home was using the first reason. They said she needed Memory Care. But the problem was, there were no memory care beds available for Medicaid patient anywhere in Houston.
In fact, there are very few nursing homes that specialize in memory care and those that do only take a handful of Medicaid patients. Lori’s mom did not need to be in a locked facility. She was unable to walk and could not move very far in her wheelchair. She had never hurt or threatened anyone at the facility. She simply became frightened and agitated in the later part of the day.
Reaching out to an Ombudsman, Lori was able to have some help. The Ombudsman helped her mediate with the nursing home to come up with a solution. It wasn’t ideal but Lori would do it.
Typical of dementia, Lori’s Mom’s behavior problems usually started in the late afternoon. It is often referred to as Sundowners. As the sun goes down many people with dementia suffer from agitation, anxiety and other stress-related symptoms. This can cause them to act out in ways that are not their normal personality.
So, Lori Agreed that she would visit her mom every day from 4 in the afternoon till 9 at night. She would be there to attend to her needs. It wasn’t easy. “ I felt like they were getting a free extra caregiver,” Lori complained.
Unfortunately, the situation is not uncommon in Houston. If you have additional questions about what a nursing home can or cannot do visit our website, set up an appointment, or come to one of our workshops.