Postcards From the Margins: Long Roads

Van Gogh's Two Poplars on a Road Through the Hills, St.-Remy, 1888
Van Gogh’s Two Poplars on a Road Through the Hills, St.-Remy, 1888I

My blog today is dedicated to the memory of my godmother.  We’re getting to the end of a long road, and soon (please God, as my mother might say) may she rest in peace.

I was visiting my parents in a far-away state in December 2008 when my mother got a phone call from her nephew, my 40-something cognitively disabled cousin. His widowed mother–my godmother (my mother’s sister) upon whom he and his sister were dependent–had fallen and was hospitalized. My cousin and his multiply disabled, wheelchair-bound sister, in her late 30’s, were frantic with worry, unable to communicate with their mother in the hospital, entirely overwhelmed by the questions the ICU staff were asking regarding my godmother’s end-of-life preferences.

There was a long history of suffering in my godmother’s family.  Alcoholism raged.  Fetal alcohol syndrome affected both children.  A heritable disease passed, entirely unfairly, from my maternal grandmother to my godmother to her children, and not to my mother or us.  Eventually my godmother joined AA and ended up helping a lot of people.  But then she died, suddenly, with no will, and with no arrangements made for her adult disabled children.  We all knew it was going to be a hot mess when she died, and we were right.  If I could do it over, I would have questioned her choice for privacy about these issues, even forced a conversation if necessary.  But I didn’t, and then she was gone.

My mother and father were older, each significantly physically disabled and no longer driving.  I intercepted the phone call.  I traveled to my cousins, and took them to see their mother. For context, I should add that when I walked into the ICU, I thought I must have been given the wrong bed number.  It was that long since I’d seen my godmother, and that much that age and illness and injury had changed her. Because another niece and I were present and willing, we helped make the decision to let my aunt die.  And for the last 5+ years, I’ve been trying to help my cousins live.

You could argue I should have welcomed them both into my home.  My mother’s extended family did that, when her parents died.  She and her siblings were young children, and were taken in by various relatives.  I guess in the end it just felt like more than I could do.

Instead, I tried to see that my cousins lived as independently as possible.  This week, nearly 5-1/2 years later, I’m still trying to see that through.

We managed my one cousin’s placement in a group home within a few weeks of her mother’s death.  And I think some aspects her life may actually have improved.  She had been home- bound in her mother’s home since her stroke in her late 20’s–unable to get in and out of the house.  Now, thanks to an amazing nonprofit and the home they run, she uses public transportation to go to the store and the movies.  She manages her own care, including hiring people to help her with food preparation and activities of daily living.  It is more a boarding home (plus) than a nursing home in which she lives, which is a blessing for a woman her age.  We talk on the phone regularly.  I don’t visit her nearly enough.

Her brother, on the other hand, had never officially been declared disabled, as his sister was, after her stroke.  His IQ was measured right around the number where some people can make it and some can’t, but when you added in the fetal alcohol effects, he couldn’t.  He tried a program of job training and interview assistance for a year, but anger issues, emotional lability and severe memory impairment made him a poor potential hire.  He was never offered a job.

We knew, then, that his living situation was not sustainable, personally or financially. This is where a Special Needs Trust (sidebar) could have been helpful.  His mother had owned her home.  When she died and the house was sold, my two cousins split what money was left (after a lot of bills were paid).  So he had
1.  a finite, relatively small amount of money;
2.  no income or income potential;
3.  an increasingly evident inability to live, safely, alone.
As long as he had assets over $2000, he could not apply for disabled adult housing.  But he couldn’t live without assistance.  A Special Needs Trust would have allowed him to qualify for the housing and personal supervision he needed before he ran out of money.  But no such trust had been set up.  He was going to have to become close to penniless–a very scary prospect for anyone, especially a vulnerable person like him–before he had access to many important programs and services.

We set aside his share of the sale of his mother’s house for renting an apartment.  We were able to get him documented (long, long overdue) as developmentally disabled by the Division of Developmental Disabilities, based on his genetic disease, cognitive and learning disabilities, ADHD and FAS.  A wonderful local nonprofit helped him out and, after much trial and error, found him a program to give some meaning and social fabric to his day.

We had gotten him the apartment because he couldn’t manage living alone in his mother’s house: he lived in the cold for days, for example, when the heat wasn’t kicking in after the oil in the burner ran out.  Eventually even apartment living, even with a lot of help, was overwhelming. He stopped preparing his own food. He couldn’t remember where the apartment laundry facilities were. He fell, and no one knew.  He was in pain, and couldn’t figure out what to do. We requested placement in a group home for disabled adults.  We waded through preliminary paperwork to qualify him for Medicaid, Social Security/disability, and the waiver that would allow him to live in a group home.

But he had to have to have fewer than $2000 in TOTAL assets to even apply.  Once he was down to $2000, it took over 6 months for the necessary applications to be processed and approved.  Do the math. It’s not pretty. We helped where we could.  But the nature of the beast is if you help you’re asked to do more.  I was afraid.  I still am afraid.  Of another delay, another requirement we didn’t know about.  Another threat that my disabled cousin would end up homeless.

And that it would be–in some true, if impractical or at least not entirely reasonable way– my fault if he ended up homeless.

Tomorrow, God willing, my cousin will move to a group home.  I’ll be there.  We’re hoping we will all be able to imagine, after 5-1/2 years, that he is eating (at all, never mind well). That he is safe.  That someone will remind him to shower, and wash his clothes.  That he will have company, and maybe even the occasional evening out for bowling.  Of course, he has to actually agree to go.  Which he has done, over and again, and refused, over and again.  He forgets everything.  He is as deficient in short-term memory as anyone I’ve ever known, of any age.  He’s 48 years old.

Wish us luck.  Pray for us.  Thanks.

A few more things:  Don’t drink alcohol if you’re pregnant.  Vote for people who believe government has a role in helping our disabled citizens. Contribute, if you can, to nonprofit organizations providing group homes for the disabled. There’s a fabulous one here in MN called Homeward Bound. And if you know anyone with disabled children, talk to them about wills, and special-needs trusts.  Today, while there’s still time.






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