Alternatives to Guardianship: Why It Doesn’t Work, And What We As A Community Can Do About It

Dear readers,

I was the victim and survivor of guardianship abuse as done to me by my own parents. I have been on two shows talking about this thing, this monster that is attacking our elderly and disabled people. Let me explain further why we need to discuss alternatives.

Rod, age 86, is an elderly man who once rode into Bike Week, but now he’s been diagnosed with Dementia. He needs lots of care, twenty-four-seven care, so that he doesn’t wander outside and do various weird and dangerous things to the outside world. Should Rod be guardianized?

Catherine, age 94, has been spilling the beans, gossiping about her own family to some people, wandering outside, forgetting where she is and what she’s doing,, forgetting the big picture. She needs twenty-four-seven care to make sure she has food cooked properly in her kitchen, coffee in her pot, and needs medications to control other physical symptoms. Should Catherine be guardianized?

These vignettes are not the only ones. Take out the names, replace them with younger disabled people and their names and symptoms, and think clearly. Guardianship, as defined by law, is supposed to be a working relationship between a person and their vulnerable family members. However, let’s try a different vignette for this exercise.

Britney, age 21, wants to raise her boys on her own without much help with the day to day things she needs done. She has been on drugs and has gotten a DUI. She was admitted to the hospital twice, was stripped of custody of her two sons, and later put in a conservatorship costing upwards of hundreds of thousands of dollars a month. She has become an ATM machine for her father, ex husband, and sons. Should Britney continue in her guardianship conservatorship?

Think about these vignettes. Britney, now aged 36 or thereabouts, or even older, should not be guardianized. Neither should Catherine or Rod. What is the commonality between these vignettes? All of these people are potential victims of guardianship related abuse. Catherine’s daughter is the only thing she has to care for her, and because of the crappy healthcare system we all live with, she doesn’t have the circle of supports necessary to live in her home. However, should there really be talk of nursing homes, assisted living, or anything else? Catherine, a woman of color in her 90s, should not be in any way placed in assisted living or nursing care because of the disproportionate number of abuse cases and the restrictions on visits due to covid 19. Rod, on the other hand, has a circle of support he needs to stay within the boundaries of his being. Britney, as everybody should know, has had her wealth stolen from her, ruined and defiled. Guardianship could also kill someone. See the next paragraph for more.

There is a book called Guardianships and the Elderly: the Perfect Crime, written by Sam J. Sugar, who has been through this dance for years. However, no volumes are available that cover the #freebritney movement or the plight of young and disabled guardianship survivors and victims. What are the results of such a book? Many people are aware of this evil, and they know it attacks our elders and most vulnerable, but it also goes after the healthy and wealthy like Britney.

What can we as a community do to stop this monster from attacking our elders and disabled folks? Here are a few ways we can discuss alternatives.

Let’s take the first step. Who can care for your elderly parent while you’re at work? IF your son or daughter doesn’t live near enough to the elder parent or grandparent, you might want to arrange for a babysitter for elderly people, better known as a caregiver or nurse, to come in and help your disabled or elderly family relative. There are many resources you can use, including a person centered approach. For Rod, he and his elderly counterparts need care that includes memory and other sorts of support and drilling to make sure his brain is working properly. He will also need a place to relax, chosen by him, that allows visitors and doesn’t have a high abuse and turnover rate. Nursing homes have that problem. While there are many dedicated nurses and doctors out there, yes, I’m talking to you front line people, there are still many more people in nursing homes who steal from elderly patients and liquidate their assets. This must be curbed and put in check.

A medical power of attorney is a way to do medical decisions without taking away vital rights, including that of voting, marriage, and social affairs. Elders need to be able to socialize so when Catherine gets isolated, why not take her to a recreational facility for elders or an adult day center? She can do things at the place, eat, hang out, and talk to others in her situation. Easter Seals offers adult day center care for disabled and elderly people, and if she cannot be at home, your elderly grandma or mother could benefit from the dedicated people at Easter Seals. They also have done things for kids, but still check out the benefits of elder socialization, letting your elderly charge take the wheel and have friends, hang out with people, and give others the chance to live. Statistics show that isolation can lead to early death among dementia patients, elderly Alzheimer’s disease patients, and many other elders. Hats off to the Japanese women living together at 95 years of age, not going anywhere, and hanging out with other elders in Japan. Japan has some of the best eldercare options in the world, and the most centenarians registered there. The Japanese respect their elders, as do so many other Asian cultures. However, the Western European principle applies here in North America, dump your elders in a nursing home and forget about them. This is bad not only for the person who does it, but for the elderly person themselves.

Younger people in nursing homes also will face abuse. Let’s take Britney for example. She cannot use her wealth much, and her father has hijacked her assets, and she could end up in a group or nursing home at age 70 or so. Her father will have been dead by then, and Britney will have no supports except her sons, who are young and want to live their own lives. What we need here is a cultural shift in attitude about the elders and disabled people. Even the Japanese have deemed blindness a curse from the gods, but what’s odd and ironic is that they put Braille on soda cans and guide strips on all the concrete floors of subway stations. I wonder if there is a possible cultural liberation of blind and disabled people in Japan going on. Elders in Japan, like I said, get the best treatments and care. Family is always around and the elders are a source of wisdom.

We as a community must learn to treasure our elders, even if they do have dementia symptoms and Alzheimer’s Disease. One thing we must do for our elders is reminisce with them about growing up. For example, I worked in a nursing home surrounded by elderly and infirmed or vulnerable people. I was able to play songs they all loved, and I was in charge of playing a lot of songs. My piano skills were pushed to the limits, but these people loved music, and some of the Alzheimer’s patients were ballroom dancers, so if you took their hand, they’d dance with you. Glenn Campbell is a famous example of a musician with Alzheimer’s Disease who died recently a couple years back. Mr. Campbell was so incoherent at speaking and remembering things, but he had it all in his head how to play the guitar, and he still played his guitar even after he was almost to death’s door. Music has that power to heal and make people feel good. If there is such a thing in Denver, I’d recommend the Good Memories Choirs. It’s a bunch of elders who sing in a choir, mostly old songs of course, but it helps them remember things. Catherine, for example, grew up in a time when lots of swing and big band jazz was played. The Great Depression and the years after that were full of great music, but most younger people would be darned if they had to learn Come Josephine In My Flying Machine, In the Good Old Summertime, and many other old favorites. So many younger kids aren’t learning music, just singing that annoying Baby Shark song that gets into everybody’s heads. That isn’t appropriate for a few reasons: it’s too repetitive and it uses the same words, even sometimes children’s songs don’t use words these days. Another way to bring back the liveliness of a discussion with an elderly grandparent and or parent, try singing songs they remember. Helen, age 72, from Florida, for example, might hear a song she remembers hearing from church at a nursing home, and it lifts her spirits up. My great grandmother, who I never even met, had many hymns she remembered from her church days, but I played many other songs on the piano that would get these people singing, remembering, all that stuff. If not that, try cooking a popular dish from that period of time.

Leaving our elders isolated and alone is not the answer, but what if your elder is deemed crotchety and frankly negative? There are ways to combat negative energy I could focus on in another blog post, but here’s something to remember: it is frustrating to adjust to any change when you’re older, finding out you can’t even cook for yourself, finding that you burn things, do things differently, can’t remember your grandchild’s name. Put yourself in your elder’s shoes. Rose, who died at age 93, could not remember whether I could do my hair on my own. I called her my Mimi. She was the only relative I could truly be myself with, and I looked forrward to her $5 gifts every birthday, and she would say, “Get whatever you want with that money.” I’d save it for lunch, as $5 would not get you much monetary things to begin with, except for lunch at school. Rose Gravina was the only relative I ever thought would even answer me when I was alone, and I gave her that opportunity to be herself. We had many a fine day together, but I wish I had asked her questions about her married life, when she got married, and her life in the roaring twenties. The 1920s was pretty much the teenage years and beyond for Rose, and she did end up getting married and having children, like any other woman would be expected to do that in her day. My father had been devastated when she died, walking into my room the night before I was supposed to leave for university in Tallahassee. I ended up not being able to attend Rose’s funeral because of college, and she would have wanted me to continue playing the piano and going to college. I will talk about end of life things in another post as well.

So what if your younger disabled family member drives you nuts and you perceive them as unable to handle life itself? So whawt if you had the guardianship discussion with your spouse or partner, your other children, but did not include your family member? Stop what you are doing, and put the pen and paper down. guardianship is hard to get out of once you get in, and it’s like quicksand, always grabbing you and pulling you in. It’s like a magnet and superglue and many other things I could say things about. However, think about alternatives first. For all of the elders in the vignettes, it should be clear that medical decisions can be removed through a durable power of attorney but not guardianship. Guardianship is too extreme on all circumstances, even Britney Spears, whose vignette appears above. So what if you are not a fan of Britney? I can relate because her father took advantage of the poor woman, and how she gets out I don’t know if we’ll ever see that.

I’d like to dedicate this post here to all the victims and survivors of guardianship abuse. Please feel free to take these steps to heart when you are caring for an elder or a disabled person. If a disabled person is so developmentally disabled that talking and doing various things isn’t an option, still, think about medicine. Love your family members with no conditions attached. Give selflessly to others, and when you yourself are older, you can do what you need to in order to make sure your affairs are taken care of. Do not let the courts decide who your family or your relative’s family can see.

Beth