Have you ever heard anything so ridiculous that you had a hard time believing it?
I imagine many people who have heard the story of my past year may not believe it. Some may think it’s flat-out make-believe — and not in a fairytale way.
One year ago today, I celebrated my 40th birthday at the hospital when my mother was admitted there. I’m not complaining. My family is a huge part of my life, and they will always take priority. I will be there for them any day of the week, any time of day.
Now, Mom is in the hospital again — after about a dozen other hospital visits (including extended stays) since last year. Every time she has been hospitalized for a physical ailment, we’ve begged the doctors to evaluate her mental health. We know something is not right. She’s done everything from drinking liquids from an ashtray to flushing a towel down the toilet (which flooded my parents' house).
They have ignored our requests. Almost Every. Single. Time.
At one point, desperate for help, we consulted an attorney who explained the steps of trying to get her “302’d,” Essentially, “a 302” is involuntary commitment for emergency evaluation and treatment during a mental health crisis. It’s the last resort. The criterion is that the person is at risk of harming themselves or others.
It took Dad a LONG time to agree to pursue this. He felt horrible. Disloyal. But he couldn’t keep living like he was.
So, he went for it. And we were hopeful.
However, with our first experience having a 302 order, crisis intervention decided to toss her, releasing her in the middle of the night! Dad and I got the call at 2:00 am to pick her up. I went to the hospital to get her — and she was GONE. Someone in the hospital called an Uber for her!
If that doesn’t expose the lack of accountability hospitals take for patients with mental health issues, I don’t know what does.
Why Is It So Dang Difficult to Get a Mental Health Evaluation?
Throughout this past year’s journey, we constantly communicated with the local Department of Aging while they conducted at-home visits, memory tests, and other assessments of Mom’s health. One of their counselors personally took my mother to her doctors’ appointments. They, too, tried to intervene during Mom’s hospital visits, asking for a mental evaluation. Typically, the hospital ignored the requests. When they did cooperate, it took the form of one doctor spending ten minutes asking her a few questions. Every time, they would declare she was “fine.”
It was infuriating.
Before her recent hospital visit, I convinced (after many hours of debate) my mother to visit a neuropsychologist who the Department of Aging recommended. That doctor’s report revealed — finally — that Mom lacked the capacity to make her own decisions.
But guess what? Just when we received confirmation of our observations, the situation became even more complicated.
Abundant Red Tape Creates a Sticky Situation
We learned that for the report’s findings to mean anything, someone must be appointed as my mother’s legal guardian. We also learned that securing guardianship is not a simple process. It requires hiring a lawyer, filing a petition to the state, attending a court hearing, and countless other hoops. And it’s still up to a judge, regardless of the evidence, to approve the guardianship. For the most part, guardianships are considered a last resort and something to be avoided unless absolutely necessary.
We had hoped for a less-complicated, mutually agreeable path. Unfortunately, Mom has not been agreeable to any alternative solution.
I have offered to get her an apartment near me, hire home care (which isn’t available where she lives currently), and take care of things for her. She flat-out refuses. My Dad wants to sell their house because they cannot take care of it, but she rebuffs that idea.
Over the course of the past year, she has dialed 911 with unnecessary calls, forged ridiculous accusations, and stayed awake all night because she was paranoid that someone was trying to kill her.
With her most recent call to 911, she also called the state police. She alleged that my father was trying to electrocute her, and he was filming videos of her and loading them to Facebook.
Dad doesn’t even have Facebook, let alone know how to create a live stream on the platform. And, he certainly has no idea why she would think he has tried to electrocute her.
Sadly, it isn’t the first time we’ve been to this rodeo. Mom has called the police — and 911 — with these accusations before. Both agencies are familiar with her calls. Both likely thought, “What now?”
So here we are. Because she complained of an emergent physical ailment, my mother is in the hospital — again.
I’ve received dozens of calls from Mom during the past ten days. She contradicts herself and makes zero sense. She refuses to sleep. Now, she thinks the hospital is trying to kill her.
The Department of Aging requested a psychiatrist examine my mother. Shortly after, I received a call that Mom doesn’t meet the criteria to transfer to a mental facility, which means she will be released. The Department of Aging demanded another psychological consultation, explaining that Mom kicked a nurse the day before, she doesn’t make sense, and she’s calling 911 from the hospital. Moreover, they already have that past evaluation confirming she is mentally incapacitated. They told the hospital they believe Mom is undeniably a danger to herself and others. Someone will likely get hurt if she is released.
What more do they need?
The hospital finally agreed to a second evaluation, which yielded that she meets the necessary criteria for a 302.
Sigh of relief, right?
Not yet.
Crisis intervention can’t find anywhere to place Mom right now. And the 302 is only enforceable for five days. So, the Office of Aging has filed for emergency guardianship, which will allow Mom to stay in the hospital for a while longer.
Now some serious decisions must be made. Someone will need to take over permanent guardianship — and that will likely be me or my Dad. We will present our decision at a hearing later this month.
The Saga Continues
All this time, all we’ve wanted is a diagnosis for Mom. We still do not have one. We only have statements from doctors that it’s clear she has “some sort of dementia.” But that’s it. That lack of a diagnosis is one of the reasons she’s not eligible to be admitted to a mental health facility.
How can anyone get proper treatment without an accurate diagnosis? And why do we have to commit someone to get them the proper treatment they need?
My Mom is angry with me because she believes I forced her into the hospital and am keeping her there. She also thinks I tried to have her committed. The phone calls I receive are hurtful and make little sense.
This is not an easy situation for anyone involved. My family and I have been through 15 months of hell with no end in sight.
One of Mom’s doctors told me what we are experiencing is something he sees far too often. That day, he said he felt like he had the same conversation with every patient and their family during the past 24 hours.
It’s no surprise that the pandemic has wreaked havoc on mental health. However, there is a line that medical professionals are afraid to cross for fear of a lawsuit. It’s an extremely tricky and slippery slope.
The situation is sad. I’m sad. My family is sad. We feel defeated and powerless. I’m worried about Dad, a disabled veteran trying to deal with his own issues. I worry about my brother. I don’t want anything to sacrifice the sobriety that he’s worked so hard to keep for the past two and half years.
And, I still have to keep my sh*t together and run a business that’s literally doubled in size in the past year. I don’t get to take time off while I process what’s going on. I lay awake at night and think of all the stuff I need to do and somehow make it happen the next day. I can’t stop in the middle of this unresolved crisis.
This has taken up a lot of my time and nearly all my energy. I’m behind on what I’ve committed to do professionally. Nothing makes me angrier than being unable to fulfill my responsibilities. I’ve become a master at just getting it done — eating at my desk, working until late at night, and getting up very early in the morning.
Thankfully, my team has stepped up to help as much as they can. I sacrifice time with my husband and time for myself to get the job done. I feel like, at times, I have no sanity. Oh, the irony!
I don’t know what the future will hold for my mother and our family. However, I feel as though we are closer to having a sense of hope — even though my mother will again be in the hospital for my 41st birthday. Only, this time, I won’t be with her. The hospital staff recommends that we refrain from visitations because it will only exacerbate her paranoia.
I don’t have any answers. But I do have a shit-ton of questions. By sharing my story, I hope that I can raise awareness of the dire deficits in the health systems’ protocols for addressing mental health needs.
Let’s make some lemonade out of lemons. Help me spread the word about mental health.
{Read the May 8th update for the latest on this story}
For those of you who wish to help, I urge to join me by contacting legislators and media. If nothing else, please share this post with your community. Thank you for your support.
This sounds so much like dementia with Lewie Bodies disease. My brother-in-law just got diagnosed after over two years of mental health issues.
Went through similar situation for eight years with my mother. Finally being diagnosed with dementia and then Alzheimer’s she fought me horribly at the beginning. She blamed me for trying to take away her independence, even after she almost burnt her house down. Trying to run my flourishing practice, take care of her and educating myself about how to get help, how to handle her, and not totally sacrifice my family relationships because she took so much time, caused my own health crisis. We do not have adequate care or help for not only mental health issues but quality elder care….. unless you have $8-10,000 a month for a decent care facility or full time home health care. My heart goes out to you, and please try to take care of yourself as you can in the midst of all of it.
My mother had dementia which was awful. My dad lived with me (no dementia but he dad no idea how hard we worked to take care of him). I’m a mental Health Counselor who works til 8 pm so I feel your pain. Yes we need elder care and all that. Very much. My question is, why were people steering you to a “Mental Hospital?” I can understand how a person who is not in the Mental Health field would not know this, but someone at an agency for aging should know that there is barely such a thing as a Mental Health facility since Reagan turfed patients out into the streets forty years ago, creating the homeless problem we have today. It is heartbreaking, and there are not enough facilities for anyone with any problem, but it is sad that you were shuttled through the wrong avenue for all those years. It seems like a nursing home of some sort with dementia services is the way to go. Perhaps you could have been on a waiting list all those years you were steered to a hospital. The people at the nursing facility would have hopefully seen the symptoms more clearly. Other than a ward in a regular hospital, A “Mental Hospital” is a relic of the distant past. And the laws seem terrible, but generations ago husbands would have their wives committed for next to nothing to get them out of the way. Those laws have a purpose. And so the pendulum swings.