Families Are in Crisis and Need to Talk About It
When Lauren first called my CarePatrol office, her dad had recently been diagnosed with dementia. Throughout the years we have been navigating the dementia journey together. I connected the family with medical specialists, brought in an elder care attorney, arranged to sell dad’s home, hired a senior move manager to help downsize his belongings, and found him a memory community that specialized in his care needs. Lauren experienced a range of emotions from feeling helpless as she watched her dad slowly deteriorate, to enraged that insurance denied him rehab. Now she was scared. “I am afraid we are going to run out of money. What are we going to do with mom if that happens?”
Dad did all the right things with his career. He had a good job with solid benefits. Both he and his wife maxed out their 401k contributions to provide for a comfortable retirement. They got their kids through college and paid off their home. Along the way they thought about buying long term care insurance, but felt they could not afford the premiums. Between their savings, social security and Medicare they figured they were in good shape. What they did not plan for was dementia.
The cost for dementia care can be exorbitant, and the disease was depleting their savings. Medicare covers things like hospitals, doctors, labs and durable medical equipment. If you have a disease like cancer, it provides for what it considers “medically necessary” to treat the disease or condition. The insurance may provide skilled services in your home under home health coverage. What it does not provide for is non-medical “companion” care to cover activities of daily living like bathing, dressing, toileting and 24/7 supervision. That is expected to be provided by family members.
Lauren’s family did their best to take care of dad at home. She hired sitters to watch her kids so she could help maintain her parent’s house and drive to doctor appointments. Her brother took the night shift and spent many sleepless nights toileting dad and making sure he did not wander out of the house. During that time mom became exhausted, fell down the basement stairs, and broke her hip while doing laundry. This created her own healthcare crisis and added to the stress.
Dementia symptoms can vary from experiencing memory loss, poor judgment and confusion to difficulty speaking, understanding and expressing thoughts or losing the ability to read or write. Wandering is common. Some develop verbal and physical aggression. If something is wrong with your brain and you can no longer shower, dress yourself, go to the bathroom, take your meds, move your legs or ask for help – these sure seem like things that might be medically necessary and worthy of insurance coverage.
Dementia has a mystery about it, and prognosis can be difficult. Maybe this is why doctors avoid speculating on life expectancy and the challenges families are going to face as the disease progresses. Healthcare professionals don’t worn you about the financial cost of care. Googling for help can lead you down a rabbit hole of confusion and poor care choices that are only compounded if there is a spouse in the picture relying on the same pool of limited resources.
The healthcare system is frustrating and complicated and often makes no sense. There is no question that the financial stress is real. While I work with many families that are in crisis, I prefer to help families make decisions before a crisis, and start the conversation as early as possible after a dementia diagnosis. Lauren was scared when she recently called. I lovingly reminded her of the difficult decisions her family had already made, and of the plan we had in place for such a time as this. We had created wills, trusts and POA’s. As hard as it was at the time, we had planned for death. Dad participated in his end of life plan and funeral arrangements had been pre-paid. The family was prepared for what dad may experience as the disease progressed. They understood the cost of memory care. If dad outlived his finances, the Medicaid spenddown plan was in place. Now was the time to implement the later stages of our plan.
Lauren asked me to stop by on a Saturday to visit with dad. He was spending most of his time in bed, and she wanted my opinion on next steps. She was in full project manager mode talking about physical therapy options and how to best counter dad’s weight loss. Today was the day it was time to stop planning. Dad’s dementia was advanced, and time was short. I recommended she schedule a hospice evaluation, and she cried. When dad opened his eyes, it took him a minute to recognize Lauren. He smiled and told her it was getting cold. He asked her to cover the air conditioner and don’t forget to turn off the hose so the pipes didn’t freeze. Those were dad’s last words. He fell asleep peacefully. His last thoughts were concern for the family he loved in the presence of the daughter that had cared for and loved on him until the end.