My brother, “Mr. K,” (what he calls himself) was born with Down Syndrome. In 1968, we didn't know there were three different kinds. At least I didn't. His was so mild that he wasn't diagnosed until he was about three years old. I remember being so jealous of him until I was about nine years old when he plunged a fork into my chest. I was pushing his buttons, typical older sister behavior. But that day I realized my poor brother wasn't in any position to participate in sibling rivalry.
Since then, I always had a protective feeling towards Mr. K. My mother refused to put him in an institution, which was the norm back then. The recent introduction of antibiotics meant his lifespan went from an expected nine years to who knows how long. I went to college. I stayed sort of in touch. I went on with my life. Periodically I would receive strange postcards from my brother indicating he was in the CIA and his life was in danger. When I would call him to find out what it was about he would say he was joking. In his 30's he jumped off some stairs thinking he could fly and shattered his leg. Because of my mom's strong determination, they didn't amputate and indeed found his bones almost miraculously healed back together.
I should mention also that, all his life, Mr. K has pulled his hair out and has absolutely no ability to restrain himself with food. He will eat an entire pizza and drink a whole bottle of soda when left to his own devices. When my mother died somewhat unexpectedly at 78 (she hid her symptoms of lung cancer, and then got pneumonia on top of her chronic COPD, a smoker since the age of eight), an elderly cousin was sent in to tell me that I had to take my brother, that he could do a lot of things, but he couldn't live on his own. That was seven years ago. It‘s taken me this long to understand what the hell was going on. I wish I had discovered your blog sooner.
Mr. K was severely delusional, rushing around telling people his wife had been murdered in Ireland and on and on. He was shockingly inappropriate with my teenaged boy. We took him to the emergency room. A neurologist tested him. He said, “Go see a psychiatrist.” My brother was in his 40's at this time. He glommed onto my husband, who is not a caregiver type. My husband finally gave me an ultimatum. “It’s your brother or me.”
I found Mr. K an apartment in a senior disability/independent living facility and started taking him to the local mental health agency. I kept thinking eventually someone would put him in a hospital setting and get him stabilized. I paid $800 for a Power of Attorney that was too complex to do its job. For two years, I applied for assistance through developmental disabilities and was turned down each time. The third time they wrote their reason was the diagnosis of schizophrenia. I called the mental health agency and asked if this were true. They said it was. For two years they never told me what we were dealing with.
My brother took the bus and hitch-hiked to his imaginary property and went missing for three days. His phone ran out of batteries. He stayed at a homeless shelter and didn't think to ask to use their phone. (My brother's IQ average is 72.) Even more maddening, I called that shelter and described my brother (a 300-pound man with Down Syndrome is pretty obvious). They said, “No he isn’t here,” instead of "I can't tell you if he is here." He was there.
I called hospitals and morgues. Only the police tried to be helpful. They filed a missing/vulnerable report which Adult Protective Services tried to have removed. Why? Because he didn't qualify for developmental disability services. I privately met with a director of developmental services in my area. She assured me Mr. K would receive all of the same services through a parallel system offered through the Department of Social and Health Services. She said he would probably do well in an assisted living or adult family home setting. Oh, it would be so easy.
Earlier this year, my brother got in trouble for writing letters to a newscaster he believed was his wife. When security at the station told him to stop, he sent her a Facebook message telling her he was angry at her for reporting him. So that got him three days in the "lockup" and started on a course of medication which, the moment he got out, he stopped taking. I was told, “Don’t worry. If he stops taking the medicine or behaves dangerously, we will bring him back to lock up.”
But they never did and never will.
We were able to get a caregiver to spend three hours with Mr. K three days a week, but he just used her as a shuttle service. He continued exactly as before — living in filth, eating terrible foods, acting out his delusions. After several months of this, I asked the agency, “Why don’t you work with the caregiver?” They said, “We didn’t know he had a caregiver.” (It was their recommendation that helped him get the caregiver.)
Mr. K began applying for credit cards, birth certificates, and social security cards in his belief that he was an admiral with a different name born 20 years earlier. He also developed heart failure and could not consistently take his medicines or get to his appointments. The last straw was when the COVID crisis struck. He told everyone, “I’m immune.” He hugged his 97-year-old neighbor as she kept saying, "We're not supposed to hug anymore." The mental health agency said they would "give him a call."
Besides having the mental illness, or partly because of it, Mr. K can't remember from day to day what he's been told/warned of/reminded to do, even if he were to be cooperative. I knew the call wasn't going to have any impact. Just like all the other "interventions." So I went to his place with my suitcase, planted myself in his apartment, and we hunkered down for the first three weeks. I gave notice at his apartment and he understood. But when the social worker talked to him, he said he didn't want to go to my house or to an adult family home. So she said she would have to file a report to Adult Protective Services. Not against the Facebook scammers getting him to send them money. Not to get him into a safer, healthier living situation. But to stop me from helping him. Because his natural reaction is to resist the bossy, older sister.
Well, I called the apartment manager and reversed the notice. Mr. K went to my house with me where he is again driving my husband crazy, but at least he is taking his medicines (heart and psychiatric) right on schedule. He's lost 14 pounds (down to 325) and is exercising twice a day. My guardianship hearing is next week.
I wake up feeling the best I have in years knowing Mr. K is supervised even though I have to do it. Keeping him busy all day is a challenge, but the moment I let up things go awry. The social worker has been looking for an adult family home for two months now. I'm not sure how anyone is going to be able to manage him. My days of thinking the government or bureaucrats or this adult family home system are the answer are over. We can't leave it to people collecting paychecks to care for our loved ones.
