In 2002 our family on the mainland told me Brian’s mail was being returned and his phone was disconnected. I moved from the Big Island to Oahu and tracked down our youngest brother living homeless in the park with mobility issues. He had lost his apartment of 12 years, his business, his vehicles and all his possessions because he could no longer walk without difficulty. He knew something was wrong and saw doctor after doctor to no avail. Brian was embarrassed to tell his family on the mainland about his struggles. He was single, no children or medical insurance and agreed to let me help him.
At the time, I was working as a social work/case manager for the Department of Health Developmental Disabilities Division. My challenge was finding resources for my brother because he was not a drug addict, not a veteran, not a senior citizen and not a criminal so he fell through the cracks. Without a definite diagnosis, no agencies could help and at 6’4” 325+ pounds it was extra difficult. Eventually there was a confirmed diagnosis of Amyotrophic Lateral Sclerosis (ALS) also known as Lou Gehrig’s Disease which is usually terminal within 2-5 years. He became my ultimate challenge and my family was depending on me.
IHS was not an option because he could not get up and down off the sleeping mats and the showers and toilets were upstairs with no elevator. I had to leave him in the park while we tried to figure it out. The police continued to ticket him for curfew even though he had difficulty walking. It was difficult to get him to court appearances so it became a vicious cycle without many options. Brian finally went into foster care that did not work out.
He was placed in a long-term care facility in Wahiawa to accommodate his size. When he got pneumonia and was put on a ventilator he was moved to Convalescent Center of Honolulu in 2004. Brian is a quadriplegic and on a feeding tube. His friends no longer visit because they want to remember him the way he used to be and hard for them to communicate since he is non-verbal.
An ALS smart house would have been a great option for him and others like him. His college educated mind is trapped in a body that is deteriorated by ALS. A mind that is “locked in” is a terrible thing to waste. Being “warehoused” in a facility that is geared for Alzheimer’s and Dementia patients is no kind of life when there are better options for ALS patients to live more dignified lives.
I visit Brian every day and oversee his care. The struggles Brian and I have endured are what motivates me to bring an ALS smart house residence to Honolulu. I want to prevent similar struggles for other pALS and their families. Perhaps this is my mission and what I was meant to do in “retirement” because of my background. I cannot do it on my own. It will need to be a community effort. “It takes a village…” Won’t you please help in some way?