Dementia · Mental Health · Resources

Resources you may actually need! #MentalHealth

I want to switch gears here a little, and jump the timeline forward to the present, and hopefully share some resources that I wish I knew much earlier on in my journey.

I’ve mentioned that my husband has schizophrenia and PTSD, stemming from his service in the US Army. I also have mental health problems of my own. To top it off, in the spring of 2013, my mom had a stroke.

It was that stroke that brought us to the ER, when we discovered that she had Stage IV Ovarian Cancer.

She underwent emergency surgery that night to install bilateral nephrostomy tubes, because the tumour was so large that her ureters were blocked, and all her pee was backing up into her kidneys.

She was sent home with medication, to wait for a debulking surgery to remove the tumour and all the affected tissue.

But shortly after she was sent home, she had two more strokes: A bleed at the old site, and another ischemic attack.

She went on to beat that cancer, only for it to return two years later.

She beat it again.

But due to a trauma that we still don’t know the cause of (I’ll share that story with you later), she suffered an acquired brain injury last summer. It was complicated by the medication she was taking but we still don’t know how she received a blow to the side of her head.

The symptoms of her first stroke were difficult to see.

It was mostly just tingling and difficulty breathing. But for all intents and purposes, she was still her.

But after her second and third stroke, she was never the same.

I told everyone that I thought she had dementia. Some mutual friends believed me, most did not. This was obviously complicated by her personality. (I remember an ER doctor telling me that I have to separate her illness from her personality because it can make the symptoms of dementia worse. I was offended when she said it but, I understand it all too well now.)

It wasn’t until after her more recent brain injury that she was finally diagnosed with vascular dementia.

I had the misfortune of having gone through being ignored when trying to get help for my husband, and then being ignored when trying to get help for my mom.

I was right both times so, when I came back to my doctor and told him I believed I had bipolar disorder, he believed me.

I was referred to psychiatry in record time, a huge contrast to the services offered and the speed at which doctors reacted to my husband and my mom.

You are Your Best Advocate

If you feel like something isn’t right, find someone who will listen.

Unfortunately, with mental health issues like psychosis and dementia, a person’s competency can be challenged. If they don’t think they’re sick, they won’t seek help for themselves. This is where “The Form” (discussed in the video above, which requires some corrections, I admit) comes in.

(By the way, here’s another lesson I learned that I wish I knew sooner: You can have all the medical data to prove that someone is incompetent but medical competence, and legal competence are not the same thing. Medical insanity and legal insanity, are not the same thing. Doctors might see someone as incompetent, but they need a judge’s permission to treat that person as incompetent. Get my drift? You might be right about your loved one, and the medical history might support you, but you need a judge to believe you, too.)

Form 2 Under the Mental Health Act

There are three people that I know of (there could be more), who can form a mentally ill person: A doctor, the police or you (all through a judge, see previous note).

When my husband first became sick, no one believed me.

I wouldn’t be surprised if calls to police when he was episodic resulted in internal notes citing their suspicion of domestic violence. They kept asking me if I needed help escaping and I kept telling them, no, I need you to pink slip him (or in Ontario, “form” him).

They never believed me and told me to speak to a doctor.

The doctor, I felt, didn’t really believe me, either. He told me a judge would never sign off on a civilian request to form someone so, I never went through with it. (Don’t worry, he was finally diagnosed and received help but, it was a long process, and we sometimes wish it had happened differently.)

But earlier this year, I was successfully able to form my mom, after an episode of delirium where she “voluntarily” discharged herself prematurely from her physio, speech and occupational therapy programs, missed a ton of specialist appointments, and then refused to go to the emergency room while exhibiting serious symptoms of a new stroke.

I went to the local courthouse, which in my case was the Grenville and William Davis Courthouse, on Hurontario, south of Main St., in Brampton.

I brought all the medical evidence I had. I also had police reports pertaining to an ongoing investigation into the man suspected of causing the brain injury I mentioned above. I explained the entire situation to the judge both verbally, and as evidence/an appendix to the Form 2 I had brought with me.

To my surprise, he granted it to me.

I took this form to my mom.

I told her that she needed to go to the emergency room with me otherwise, I have a legal order from a judge that gives the police the power to detain her and force her to go to the hospital.

She willingly went with me.

The Form 2 itself worked but, in order for them to keep her longer than the required 24 hours, it needs to explicitly be a mental health issue. And they need to go back to a judge to receive permission to hold her longer.

But get this: Dementia is not considered part of the mental health act in Ontario.

It’s considered part of internal medicine. (The more you know…)

So, after 24 hours of tests being done, she was released, with a referral to geriatric internal medicine (more on that below).

You can get the most recent version of Ontario’s Form 2 here (it will download to your device as a PDF).

If you live in another province, you’ll have to find out the equivalent form.

In most states in the US, it’s referred to as a “pink slip.”

Peel Crisis Line: They Make House Calls!

Peel Crisis Support

Sometimes, it’s easier for someone with dementia or another mental health issue, to hear that something is wrong, from someone else.

The saying goes that, “We hurt the ones we love.”

You’re the one around, and therefore, it’s easier to blame the problems on you. And it’s easier to develop paranoia that you are the source of their suffering, as opposed to a diagnosable, treatable or manageable condition.

(This is specific to my area because, it’s where I live. But I know these teams exist in other jurisdictions.)

In Brampton and Mississauga, there is something called the Peel Crisis Line.

My husband has used it. I have used it. And we’ve used it for my mom.

My biggest pet peeve with the crisis line (granted, it makes total sense), is that they will not do a house call if the patient doesn’t consent. They will also not forward the information they gather to a relevant medical personal, if the patient doesn’t consent.

Obviously, if the patient says they’re a danger to themselves or others, special provisions can be followed. Otherwise, the level of care received is solely up to the patient.

I know many jurisdictions have a similar service. If need be, call (using the non-emergency line) or visit your local police station and ask them what resources are available in your area to deal with dementia or mental health.

Vulnerable persons registry

Another resource that is available in Peel Region (Brampton, Mississauga and Caledon), that I know is also available throughout many police stations in Canada and the U.S., is the vulnerable persons registry.

My understanding of the registry is that you can provide information about a patient that can help first-responders get a better idea of the situation before they respond to a call.

For example, if you provide that Jane Doe has dementia, and is prone to wandering: You can provide her home address, their birthday, their full-name, any health conditions, and most importantly, how to approach the person in an emergency. Watch the video above, as it can provide a much better picture of the program.

Again, this is specific to my area but feel free to Google vulnerable persons registries in your area. For dementia, you can also look for help through your local Alzheimer’s Society chapter.

(FYI, in Peel Region, we have an Elder Abuse Coordinator. Her name is Const. Angela Kennedy. My understanding is that all police-related incidents involving victims 60-years-old or older, come across her desk. She is a wealth of information when it comes to protecting an elderly person in Peel Region.)

Don’t be afraid to involve police

Because I grew up in an abusive home, I spent a lot of my youth around cops.

For the longest time, the mere sight of a police officer would trigger me, and I would be shaking in my boots for no apparent reason.

I never know when it’s appropriate to call the police.

And I’m always apologetic when they respond, feeling like I’m just wasting their time with my drama.

At the end of the day, if you have a genuine concern about someone’s health or wellbeing, don’t be afraid to call the police. (I’ve used the non-emergency line to speak to a detective about what I can do in certain situations, that won’t result in an emergency 9-1-1 response.)

And don’t be afraid to allow the loved one who’s sick, to call police, either.

I remember another person who’s mom had dementia, wrote online about how his mother would constantly call the police, as her mental deteriorated and she became more paranoid and delusional.

Eventually those calls were used as evidence in court, to determine competency, and worked in the son’s favour when he tried to put her in a home.

I hate to be a strain on the system, especially when there are such serious crimes going on in our city everyday but the other thing I also had to come to accept, is the fact that I’m not the one making false calls to 9-1-1. And there isn’t really much I can do to stop it.

At the end of the day, I wouldn’t to bar access to 9-1-1 for my loved one because they may genuinely need it one day.

And since they’re on the vulnerable persons registry, it gives first-responders the tools to gauge the seriousness of the call.

Geriatric Internal Medicine

Moving back to the medical aspects of mental health, specifically dementia: I mentioned above that dementia isn’t cover under the Mental Health Act. It’s considered a medical issue, not a psychiatric issue.

After learning that, I realized that most dementia cases in Canada, are handled by geriatric teams, since it tends to strike the elderly.

Geriatric teams tend to focus on care for the elderly, aged 65 or over.

My mom was only 63 when her case came across the geriatric team.

The emergency room doctor who admitted her when I got her formed, appealed to the geriatric internal medicine team to make an exception. This is how I got her into the geriatric team before she turned 65.

In my experience, no medical team understands the intricacies of dementia, better than the geriatric team.

If you suspect your loved one has dementia, try to get them into geriatric care, as soon as possible (I don’t mean a geriatric facility, per se, but at least have a geriatric team involved in their care). Different hospitals, have different wait times for spots in their programs. You can call around, or ask your family doctor, to tell you which hospital has the shortest wait.

The Central-West LHIN

When the Ford government took over, they started referring to this organization called LHIN.

My family, having had so much experience with the medical industry in Canada, was immediately confused as to what LHIN was.

LHIN stands for the Local Health Integration Network, formerly the CCAC, or the Community Care Access Centres. They help provide care in the community such as, home nurses, home occupational therapists, home personal assistants, as well as attaining OHIP funding for Alzheimer’s Society day programs, just to name a few.

They are another resource you can turn to, when looking for care for your vulnerable loved one.

Brampton is in the Central West corridor. You can find more info here.

Alzheimer’s Society

Alzheimer’s Society, doesn’t only deal with Alzheimer’s.

They are there to provide support to all patients with dementia, and their family, friends and caregivers.

I remember during one meeting, one of social workers sat me down and explained that the society mostly exists for the caregiver.

Often, the patient doesn’t know they’re not well and it’s the caregiver, who carries the burden of the fight.

They provide respite care, day programs for the patient, support groups, seminars, and all sorts of resources. There are local chapters all across Canada and the United States.

If you suspect someone in your family has dementia or Alzheimer’s, I recommend putting a call into your local chapter right away.

Office of the Public Guardian and Trustee

If there are no continuing power of attorneys for the patient, known to exist, the Office of the Public Guardian and Trustee, can provide you with a wealth of information regarding what is competency, and how to determine whether a patient requires someone to take over their estate.

To discuss my experience with OPGT, would be an entry all on its own so, I will just link to the page entitled Protecting the Rights and Interests of Mentally Incapable Adults, on the Ontario Ministry of the Attorney General website.

Elder Abuse Line

Now, I mean absolutely no disrespect to people who work on elder abuse crisis lines.

The work is needed and it’s admirable for people to take that task on.

But at least in Ontario, my experience has been, they are great for talking, not so great for action.

I don’t want to demean the people who work there but, they tend to be information driven. They take the story and give you resources that you can access. And those resources tend to forward to more resources, and not to anyone who can really take any action on your behalf.

But, like I said, you need them.

Find the local elder abuse line if you feel that the vulnerable elder in your life is in any danger. They will point you in the right direction.

If action is what you need, and you need it desperately, I recommend taking some of the routes I’ve brought up above.

I hope this helps!

This is just the tip of the iceberg (I find myself saying that after every post).

I’ve been in contact with so many organizations, politicians, lawmakers, peers — so many people who provided me with different information, and with different subcategories that I need to explore, under the umbrella of mental health, that it would probably take me the rest of my life to be able to share all of them with you.

But I do hope that the resources above will be helpful to those of you who find yourself suddenly caregiver to someone who is mentally ill or has dementia.

All my love and best of luck to you.

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