Some background…

Boomer Time!
Yes that is me - one of the 78 million born from 1946-1964. Along with our other traits, we are classified as the Sandwich Generation. Stuck in the middle to care for our children, parents and, if we are lucky enough, grandparents. I was blessed to assist in care decisions for a great grandmother, as well as grandparents.

A Nurse – so I know it all, right? Wrong!!
My grandmother thought I knew it all! It is so different to be on the patient and family side of the bed. We as health care professionals think we remember what it is like on the patient and family side of life in our practice. From my perspective, this is not so. Health care functions in silos. One area, the clinical side, is rarely concerned with the financial or payment side. I understand hospital settings very well. I have very little knowledge of the long- term care world.

Long-term Care - the unknown odyssey.
So much to know. So far behind.

The Daddy - He was and is just the best! To be honest, he is not even my biological dad. No one would ever know. He raised me from a baby barely walking and is still teaching me today. You see, he is 73-years old and has Alzheimer’s. Looking back, personality changes had already occurred 16 years ago when my son was born. He was emotionally disconnected. He has always looked healthy. And other than his degenerating brain, is healthy. He is not on one medication, and has perfect blood pressure!

In the beginning it was so frustrating for him. He noticed the changes… slow changes. He started to become overwhelmed in activities with multiple steps. Packing - pack, unpack, and pack. Money concerned him, but he was not sure why. He eventually forgot how to work the remote control for the television, how to dial the phone, how to cook. The man was a great cook. He tried to motivate his brain – crossword puzzles and a dictionary stayed on the kitchen table. Eventually, slowly, cognition declined. Even with my frequent visits, it become apparent he could not live independently. My family became more concerned and frequently fretted about next steps. We could not be sure he was eating. We knew he was not bathing regularly. More serious, he lived in an attached condo. He could forget and leave the stove on or a burner with a pan, causing a fire. We had great concerns he could harm himself or others, or someone would take advantage of his condition.

He and my mother were married for 26 years and then divorced. Still bonded, my mother chose to move him to Tennessee where she lives, to care for him. Big commitment, right? My sister was also there to support as a caretaker.

He became part of my mother’s neighborhood. Walking was his thing. He would walk and walk and walk. He would stop and attempt conversations with the neighbors. The community came to know him, love him and look out for him.

Moving him to my mom’s was the easy step. Next came time for long- term care. This decision alone is stressful. When is the right time? The family members feel guilty and helpless. Ok, so that is one side - the family connection, feeling like you are abandoning a loved one. The other side is the unknown minutia of red tape, regulations, and facilities – in other words the real world of health care and the reason health care reform is so critical.

We hired an elder care attorney. While I know many cannot afford this, we could not either, but did. We chose to hire the attorney simply to guide us on the best decisions for my dad. It is amazing, however, the attention and response we received from health care representatives once they learned an attorney was representing my dad’s interests.

I consider our family responsible. We had records and documents and yet, still never seemed to have the right documents. What about those who do not? Maybe records and belongings have been lost in catastrophic events like Hurricane Katrina.

There were so many issues and decisions. What kind of facility is best? How do we pay and what is the financial impact to his long-term care that will be needed? He could live another 15 years. My dad is a vet. He was not in active duty, but was a paratrooper. Hence, he ended up with some chronic back issues. Of course there are no records to document this injury due to a fire at the VA records facility in St. Louis. My dad could not speak to this – no memory. One recommendation – keep every document!

This is not an unusual story. It is happening to thousands of families as you read this. During this experience with my dad, one thought repeatedly entered my mind. How do people that do not have family or significant others with their best interests at heart survive in our health care world? Everyone needs a personal advocate. Every patient is a person with a history, a story, and is a human being who deserves the very best treatment at the end of life. But not every patient is lucky enough to have that advocate. Certainly the guiding principle of assuring that advocacy should be an integral part of health care reform

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