You suspect your parent has dementia, or you just found out your parent has dementia. What should you do right now? See the infographic for the bare bones, and more details on these big-picture tasks below.
Slowly. Hyperventilating may feel like a perfectly reasonable response. But when you come to from passing out, this is all still gonna be there.
There’s a pretty good chance you’re feeling overwhelmed. Overwhelm often leads to action paralysis. So just breathe and let’s break it down to one step at a time.
Sorry to say, millions of others have been in your shoes. You will make it through this, just like we have. There’s no going around this, or over it, or under it. The only way through it is, well, through it.
I feel ya
Lucky for you, I’ve worked with over 1,100 people living with dementia and their families. I’ve got the professional experience.
But I’ve also got the personal experience: I’ve lost 5 grandparents to Alzheimer’s disease, complications from Alzheimer’s disease, vascular dementia, and Parkinson’s disease with dementia.
Plus, I served as guardian (or, “elder adoption,” as I call it, because they really became my family) for two clients; one had Alzheimer’s disease and one had mixed dementia (Alzheimer’s disease + vascular dementia).
You’ve always got support here. If big-picture and an understanding ear is all great, but what you’re actually needing is concrete ideas on the granular level, check out 48 Quick Tips for Dementia Care Partners. These are the most popular, useful tips I’ve ever shared (as judged by the feedback I received):
Also, please get involved in a support group! This is by no means an exhaustive list, but some good places to start, depending on where you live. You can find one in your area (or online): Alzheimer’s Australia (AU), Alzheimer’s Association (US), Alzheimer’s Foundation (US), Alzheimer’s Society (CA), Alzheimer’s Society (UK), Lewy Body Dementia Association (US).
You’re also welcome to join my private Facebook group, Tips, Tricks, & Tools for Dementia Care Partners.
Okay, now that you’ve put the oxygen mask over your own face first, let’s move on to your parent or partner.
The very first thing to do in your Right Now Plan is ensure safety. Here’s how:
Ask These Questions
Ask, “What would you do if there’s a fire?” or “What would you do if you thought you were having a heart attack?”
You’re looking for not only the right answer, but also the ability to state that answer quickly. If your parent or partner isn’t able to respond appropriately, it’s time to arrange for in-home help, adult day care, or a move to a supervised environment. Period.
There’s a tendency to be shocked by the wrong answer at first, then brush past it altogether by convincing yourself it probably won’t happen in your family. That’s understandable and human, and also not at all helpful.
I ask these two questions when I’m doing an assessment for a private client. Some of the answers I’ve heard include–after a lengthy pause to think it through–“Get a towel to smother it,” and, “Pour some water on it,” and, “Go in the other room.”
Yes, those are actual, real answers to, “What would you do if there’s a fire?” And please don’t be fooled: the correct answer is not “Call 911.” The correct answer is “GET OUT!” Then, certainly, call 911.
But what about having a heart attack? Well, I’ve heard all kinds of bad answers to that question, too. The most memorable, though, was this: “I’d wait for my daughter.”
Me: “You mean, call her and wait for her to come?”
Lovely Client: “I wouldn’t have to call her. She comes every Tuesday afternoon.”
Very bad luck if this happens Tuesday night, right?
I ask these questions toward the end of the assessment, which my clients experience as a friendly social visit. So it’s safe to say they’re relaxed and having a friendly chat. They aren’t feeling any panic. No pressure to make the right decision. They aren’t in fear for their lives.
A bad answer in a relaxed situation is a lethal response in an emergency.
The stewing really is worse than the doing, so take action. In Oregon and Washington, find help at RetirementConnection.com and OSRAA. Elsewhere, Google “in-home care,” “adult day care,” “placement consultant” + your city.
Sign Up for Safe Return
Another way to ensure safety is to get signed up for the Safe Return Program. Wandering away isn’t a problem in your family–yet. We don’t know if it ever will be.
What we do know is that a whopping 70% of people living with dementia wander at some point in their disease process.
And just for clarity: wandering is a bit of a misnomer, implying a casual stroll, no particular purpose in mind. For people living with dementia, that’s almost always not the case.
By the time “wandering” becomes an issue, they’re looking for something. It’s a purposeful walk. And people with a purpose–on a mission–typically don’t dawdle.
The advantage of signing up for the program now is that your parent or partner will get used to wearing the bracelet or necklace now, and it won’t become a thing later. Plus, you won’t worry about it anymore.
Another smart idea? Upgrade to the Caregiver ID option. This means that should something happen to you while you’re not with your parent or partner, first responders know your loved one exists and is depending on you. That’s some serious peace of mind, right?
Get A (Correct) Diagnosis
The next thing to do in your Right Now Plan is get an accurate diagnosis, if you haven’t done that already. And chances are, you haven’t. Almost nobody does!
So why is it important?
Getting an accurate diagnosis can be particularly important when making medication decisions. For example, a single dose of the wrong medication can be lethal for a person living with Dementia with Lewy Bodies.
And a proper dementia diagnosis is made by exclusion, meaning lots of other (usually treatable) causes/conditions have been tested for and ruled out prior to diagnosis.
Treating the other conditions (typically, impaired thyroid function, vitamin B12 deficiency, and depression) usually doesn’t mean the signs of cognitive impairment disappear–but they often improve noticeably.
Specialists are the best at what they do
In other words…if the diagnosis came via the primary care doc after a five minute visit, and the pronouncement is “dementia!” I’d strongly advise getting an accurate, specific diagnosis. Even if you’ve known the doc for years and he’s like family.
No one wants to hear a diagnosis of a chronic, progressive, incurable, terminal disease process. I get that. And getting your parent or partner to the doctor can be a serious challenge. I get that, too. But considering all I just said, doesn’t it seem worth the effort?
I’ve personally worked with three people who actually didn’t have dementia, despite an on-the-fly diagnosis; it’s rare, but worth getting a proper diagnosis. Google “neuropsychologist” + your city.
Create Legal Documents
Step 3 in your Right Now Plan is to create from scratch, or update and revise any existing documents to reflect the current situation.
Use An Attorney
One common objection to getting this done is that it sounds like less fun than an unanesthetized root canal and 10x as expensive.
Here’s an insider secret: elder law attorneys tend to be compassionate, and whip-smart when it comes to considering and planning for every angle. (Also, you’d probably be stunned at how many of them take payments.)
If you put this off, chances are very good you’ll end up spending (or losing) way more money, and it’ll be in the midst of a crisis. Why?
Crisis Management Is Expensive
Because if your parent or partner does not clearly spell out who she wants in charge of finances and what type of care she wants when she’s no longer able to make decisions, you’ll need to go to court to get guardianship and conservatorship later.
The cost goes up because now the attorney needs to file more paperwork and possibly appear in court, also. The crisis factor goes up, too, because everyone involved with your person gets a notification and the opportunity to object.
That loser sibling of yours who says there’s nothing to worry about, never visits, and has always shown way too much interest in your folks’ will? That’s the guy who’s going to make a bad situation worse, I promise you.
So go ahead and execute on this piece of the Right Now Plan…well, right now.
Your future self is already thanking you a million times over for having one less (big) thing to worry about in a crisis!
Set Communication Norms
This part of the Right Now Plan is almost always overlooked, and definitely not given its due as a crucial piece of the plan. But think about this: communication is how we connect.
Dementia attacks the brain, including communication command and control. How do you connect once that happens? This is why it’s important right now that everyone get on the bus and head down the same path.
With Your Parent or Partner
Always bring respect, kindness, and love and make the decision right now that you’re not going to argue, no matter what.
And by the way, if you do nothing with your Right Now Plan but this one piece, you’re going to have a far more positive experience on a day-to-day basis than virtually anyone else on the same journey. (That said, you’re still screwing the pooch if you don’t get the other parts of the Right Now Plan done, too. Clearer still: you’re the pooch.)
With Your Siblings/His Kids
Everyone’s having a tough time and showing it differently. Make a decision to not take it personally, and listen empathetically.
Let’s be real, though: your siblings may be jerks. They may have always been jerks, but you just papered over it to keep things smooth on the surface so your folks didn’t need to worry about it.
Or your partner has kids who never seemed to give a rip, and now they’re crawling out of the woodwork, second-guessing every move you make. Again, everyone is going through a tough time and handling it differently.
But also, sometimes people are just long-term jerks. The added stress of this illness does not make a bad relationship better. It doesn’t make shirkers suddenly step up. For a deeper dive into managing this, check out my piece How To Handle Family Conflicts on Sixty+Me.
Sometimes others (even doctors!) will make a fool of themselves by speaking about your parent in front of your parent.
Help these misguided souls by saying something like, “Why don’t you ask Mom that?” or “I’m pretty sure Dad popped in his hearing aids, so just speak right to him!” People just don’t know what they don’t know :/
You wouldn’t want to start off at a sprint and find out 100 yards down the road it’s actually a marathon, right? Same principle applies here. So even though you may think this piece of the Right Now Plan is a can you can kick down the road, please rethink that.
It’s better to know what to expect so you can prepare yourself to the best of your ability. Learn about the disease process so you know what to expect, how to keep your expectations realistic, and how to plan for the future. And feel free to ask an expert 😉
Updated July 8, 2017
Christy Turner is the founder of DementiaSherpa.com and has enjoyed the privilege of working with 1,123 people living with dementia and their families. Follow on Facebook, Google+, Instagram, Pinterest, Twitter, and YouTube. Content varies across platforms.