Steve’s mother turned 95 years old in June. Ninety Five! Joan was born in 1920. To put that in perspective, women didn’t win the right to vote until two months after Joan was born. It was the dawn of the Jazz Age, a decade in which there was prosperity and Prohibition, more Americans lived in cities than on farms, and the nation’s wealth more than doubled. Life expectancy for those born in 1920 was 54 years.
People with mental retardation, as it was then called, experienced a variety of fates in the 1920s. Those from wealthy families may have continued to live with their families, with the help of live-in support. Others were “institutionalized,” usually in rural areas, so that farming could help sustain the inhabitants. Eugenics, which held that a superior race could be formed through selective breeding of only the most physically and cognitively robust, influenced institutional practices in which the men and women were segregated, lest they copulate and produce more “feeble-minded” offspring.
Joan has led a very privileged and colorful life. The oldest of three girls, her father built an electrical engineering company in Boston, where Joan worked as a designer/draftsman. She divorced Steve’s father not long after World War II when letters written in Japanese arrived at the family home, with pictures of small Asian/American children. Joan had the letters translated, and it appears Fred had sired another family in the Pacific while on deployment. After her divorce and the emancipation of her three kids, Joan traveled extensively, including Russia, Denmark, England, Ireland, Scotland, Bermuda and the Bahamas. She “hot-bunked” with actor Sterling Hayden on the schooner Yankee sailing off the coast of Maine.[i]
Did I mention Joan turned 95? The last several years have been marked by Joan’s failing memory. She doesn’t have Alzheimer’s, but rather age-related dementia. Steve calls Joan in Massachusetts every day, to keep her mind engaged with stories of her family and her life. Not unlike her son, Joan enjoys a good laugh. The benefit of age-related memory loss is Steve is never wanting for new material; he recycles from the past and present liberally. Joan’s favorite daily activity is reading the Boston Globe—over and over and over again, with delight, consternation or irritation with politics (perpetrated by “newcomers” she has never heard of—ever, no matter how many times she hears of them–like Obama and Kerry and Clinton.)
Most people born in 1920 never, ever expected to live to 95. The $1100 a month Joan receives from Social Security seemed like a comfortable pension, as she viewed her future in 1985 upon retirement. In addition, Joan had an IRA, and a modest inheritance from her parents. –Enough of an inheritance to spoil the grandchildren, travel some more, invest in her daughter’s noble but unsuccessful entrepreneurial foray into a strip mall card shop, and cover uninsured costs of Steve’s brother’s cardiac surgery at Mass General. And then the money ran out.
When Joan paid credit balances on her bills so often that the utilities and store merchants had more of Joan’s money than she did, Steve took over the finances. Joan’s memory loss, combined with a significant age-related hearing impairment that interfered with daily functioning, made it increasingly clear Joan was less and less able to care for herself.
As the oldest of his brother and sister, and the executor of Joan’s estate, Steve struggled with whether to go to court to gain guardianship of his mother.
Guardianship. It is something Steve and I had struggled with before, when Jason and Joshua turned 18.
Here’s the thing about guardianship, as my mentor Bill Hughes taught me: assuming guardianship of an individual means significantly restricting the person’s individual rights and freedoms. It’s a process to be undertaken when an individual over the age of 18 is unable to take care of themselves or their property. It involves going to probate court, and convincing a judge that your assessment of the individual’s diminished capacity is an accurate one; the guardian then assumes responsibilities.
Fortunately, legal guardianship is not an “all or nothing” thing. You can examine areas in which your son or daughter is capable of making safe decisions, and where s/he needs help. Autism Speaks suggests assessing whether your loved one can . . .
Medical
- Seek medical care when he or she is sick or injured
- Weigh the risks and benefits of any particular medical procedure that is being proposed
- Understand the need for routine medical care
- Understand that even if a medical procedure is painful or unpleasant, it may still be necessary
- Assess whether a particular medication is desirable, even though it may have unpleasant side effects
- Provide accurate information about his or her medical condition
- Follow medical advice
Education
- Grasp the essentials of his or her leaning problems and understand the services needed to learn effectively
- Advocate as needed to obtain necessary education services?
Finances
- Understand money basics, including the purpose of money, how to count money, and how to make change
- Safeguard money so it’s not lost or stolen
- Budget money so that some funds are available to pay expenses at the end of the month
Vocational/Adult Services
- Apply for services from the Dept. of Disability Services, Dept. of Mental Health or other agency that serves people with disabilities
- Access necessary services and supports such as job training, employment support, or a day habilitation program
- Negotiate with the agency overseeing his or her care to obtain the best possible services
Living Arrangements
- Provide for his or her own physical care and well-being such as purchasing proper food, clothing, and shelter
- Live harmoniously in a group setting, respecting others’ needs for quiet, privacy, and cleanliness
Legal and Decision-Making
- Understand the implications of signing documents
- Make sound decisions in important areas such as living arrangements, school, and work
Self-Care and Safety
- Have personal safety skills, such as staying out of dangerous areas, not talking to strangers, and keeping doors locked
- Know how to summon help in an emergency, such as a fire or accident
- Have basic safety skills such as being careful around fires, stoves, and candles
Communication
- Communicate effectively (verbally or by other means)
- Understand that he or she has choices, and be able to express them
You can seek guardianship in all areas, or, or just some.
Now, with that said, I have mixed emotions about all this. To put it out there, we have full guardianship of Joshua, who is a pretty impaired (if gorgeous and wonderful) young man; and no guardianship over Jason at all—who still has shortcomings in his capacities, but we meet them in different ways.
How, you ask? Stimulus control. Or as my Dad would say, the “you wanna play with my toys, you gonna follow my rules” method of influence. (Dad had a boat. And an extended work-related stint in Hawaii that included his young family. And a condo in Florida (ok, not the great investment we’d all hoped it would be, but it was fun nonetheless.) And friends who dove for lobsters and dug for clams and fished for tuna. Just enough cool stuff going on to keep one interested in not messing up the opportunity to partake in some of it.)
So with Jason, while he still needs our perspective and frankly, decisions on health, finances and some aspects of safety, we’re confident as of right now that Jay will see things our way. We’re the purveyors of a lot of things Jason is charmed by, like a car (technically, still “Mom’s car”), a few bucks at the end of the month when the budget gets blown for good reason, birthdays, Christmas, a vacuum (oh, joy. But let the record show, the vacuum came out of Dad’s budget, not Jason’s—so that counts as influential), and a new shower curtain (ditto.) As of yet, there’s no hint of contrariness in the lad indicating he will rebel against our advice (decisions) simply because it comes from his parents. If I had to sum it up, I guess I’d say Jason trusts us in matters of importance, and he doesn’t yet put any energy into disagreeing with us.
If that day comes, we’ll have to seek some guardianship. But so far, so good.
And Joan? Well, basically the same thing. Steve didn’t seek guardianship, because at the moment there doesn’t seem to be a need to. Steve has power of attorney, and manages his mother’s finances. He monitors Joan’s health and well-being, and ensures her live-in companion (at the sprightly age of 90) remains competent to provide day-to-day safety and quality of life oversight.
So far, so good. Fingers crossed. I’ll keep you posted.
[i] “Hot bunking” is a concept in which two people share a bunk, but, alas for Joan, on alternating shifts.