When my husband Alex and I got married, we combined two families. Together we have eight children. Two weeks ago half of our kids were in the midst of caregiving crises. We are grateful that none of them are taking care of us right now, but we are aware that there may be a time in the future when they will have to get involved in managing our healthcare and/or finances.
As we listened, consoled, and occasionally provided input and advice as they were trying to negotiate their way through these sudden difficulties, we learned a few things that we can do to make it easier on our kids if and when we are the ones in need of help.
Mare’s Crisis – Her Father Gets Abandoned at a VA Hospital
Mare, our daughter-in-law, was the first child to call in a panic when Paula, her father’s girlfriend refused to take him home from a VA hospital after he’d been discharged for an acute illness.
Gary* and Paula* met and fell in love twelve years ago when they were both in their early seventies. Gary was divorced. Paula was a widow who had cared for her first husband, a Vietnam vet, through decades of suffering with the debilitating effects of exposure to Agent Orange. Had she and Gary gotten married, she would have lost her VA widower’s benefits, so they agreed to live together and keep all of their financial assets separate.
For nearly ten years they had a terrific life, and then in 2013 Gary started displaying some classic symptoms of Alzheimer’s. In 2014, he fell and sustained a traumatic head injury. His dementia escalated and his behavior became erratic and alarming.
Mare flew to Texas last fall. She visited the Alzheimer’s facility run by the VA and got her dad’s name on the waiting list. I urged Mare to get her father to appoint her as his durable power of attorney and healthcare representative. Fortunately, at that time, he still had the mental capacity to sign the documents in front of a notary public. She encouraged Paula to hire non-medical care providers and join a caregiver support group. Paula refused, and she became suspicious of Mare’s motives.
Around Christmas, Gary started wandering away from home. He often went to neighbors’ houses, pounded on their doors and told them Paula was holding him hostage against his will. He begged them to help him escape.
A few months later when he and Paula would sit down in the evenings to watch television, he started believing that he was living the stories on the screen. In his mind he was the leading man and the female actors wanted to have sex with him. He often engaged in sexual self-gratification in front of Paula while they were sitting together watching TV. She felt insulted, betrayed, and disgusted.
At the beginning of April, he became incontinent and could no longer control his bowel movements or clean up after himself. And then, on a Friday afternoon a few weeks ago, when he started running a high fever, became nauseated, disoriented, and highly agitated, Paula drove him to the VA hospital.
On Sunday, when his condition stabilized, Gary was discharged. Mentally, emotionally, and physically exhausted, Paula told the doctor, “I’m not taking him home. He’s been on your waiting list for memory care for since last fall. I can’t do it anymore. You find a place for him now. I’m done!” And she walked out of the hospital.
Communications Fall Apart – Suspicions Arise
What happened after that is typical of what happens in a lot of families in the middle of a healthcare crisis. Paula didn’t call Mare herself. She asked the staff at the VA hospital to do it. When Mare got the call two days later, she was told that her father had been abandoned. Gary’s brother called Paula and told her since she and Gary had lived together so long, they were actually married according to common law and that she should pay for his care in a long-term care facility. When Mare called Paula and told her she was going to call an attorney, Paula accused her of trying to get her declared as Gary’s common law wife so she would have to pay for his care out of her own assets. She hung up on Mare and hasn’t answered any subsequent phone calls.
Elder Law Attorneys Come to the Rescue: Five Things They Did to Help
An attorney, who was Mare’s best friend from college, got in touch with a good elder-law firm in Texas. When Mare described the situation, they went into emergency mode. Mare learned that she had done some things right for her father, but she was about to do a lot of things that would not have been in his (or her) best interest. Here are a few of the things they did to help:
- They explained the actions they would need to take to get Gary qualified for Medicaid.
- Since Mare has a work-related disability and receives SSI income, they told her that, in the state of Texas, it is possible for a parent to give a disabled child a one-time cash gift that will not disqualify him from receiving Medicaid benefits. She is going to be able to take the $7,000 cash value of his life insurance policy as a gift. That will allow her to keep up the payments on his policy and still have enough money to cover his funeral expenses when he dies.
- She thought her dad’s Aid and Attendance benefit could only apply to his care in a VA facility. The attorneys told her A&A can apply to any long-term care facility that accepts Medicaid patients.
- She learned if she had called the local Area Agency on Aging last fall, she could have gotten a social worker to go to Gary and Paula’s home, assess the situation, and help them find the services they both needed to manage this extraordinarily difficult situation.
- She also learned that finding a good elder law attorney isn’t always easy. She Googled “Elder Law Attorney” plus the name of her father’s town and got no results. She called the Texas Bar Association and was told that for $40 they would provide a list, but they could not make a recommendation. She called her attorney friend from college, and her friend made the connection for her with a reputable firm in Dallas.
Mare sold her father’s pickup to pay the $4,200 in legal fees, and she said, “It was worth every penny! I would have totally screwed up Dad’s care. There is no way for an ordinary person to find out what an elder law attorney knows. They know how the system works. They know how to take action in an emergency.”
Gary is now living in a community center. He can stay there for 30 days. If the attorneys hadn’t started the Medicaid qualification process, and if a room in the VA facility did not become available for him by the end of that time, he would have been out on the street.
What Can Parents Do Now To Make It Easier for Their Children?
When I asked Mare what she thinks parents can do to help their children become better and more effective caregivers, she said, “Get your end-of-life documents in place now! If you have assets, an elder law attorney can help you protect them. If you don’t have a lot of money, property, or possessions, they can help you avoid making costly mistakes while you are getting qualified for Medicaid. Don’t put the burden of figuring all of this out on your kids in the middle of a healthcare crisis.”
When I told her all of our documents were in the red and gold notebooks on the bookshelf in our office, she sighed heavily and said, “That is the smartest and kindest thing you could ever do for this family. Thank you!”
If you or your loved ones may need help with determining the best course of action for caring for an older loved one, you may want to get in touch with NAELA (the National Academy of Elder Law Attorneys) and the LPCFA (Life Care Planning Law Firms Association). Visiting the contact pages on both of these organizations webpages may help guide you to resources to your state and geographical location, giving you the information you need to make the best possible choices for you and your loved ones.
Elaine K Sanchez is a caregiver speaker and author of the unflinchingly honest and surprisingly funny book, “Letters from Madelyn, Chronicles of a Caregiver.” The second edition is now available in bookstores and on Amazon.
*Names and identifying details have been changed to protect the privacy of individuals.