Updated 9/14/17

Embarrassment.  We’ve all been there, and we all strive to never go there again. 

It’s feeling ashamed, bewildered, confounded, confused, crushed, discombobulated, and disconcerted. Not to mention humiliated, in a tizzy, mortified, rattled, taken aback.

When you look at all the synonyms for embarrassed, it easy to see why it’s such a big deal. At least in the moment, it does sort of feel like the sky is falling, doesn’t it?

The best case scenario is we can just laugh off an embarrassing moment. But what about when it comes to a parent or partner living with dementia? It’s not the first, second, or even tenth thing we usually talk about, but it’s still there, lurking in the background.

In my experience, embarrassment seems to fall into three main categories when it comes to dementia: embarrassing stories, embarrassing topics, and questions care partners are too embarrassed to ask.

Embarrassing Stories

We keep the embarrassing stories to ourselves, certain no one else has ever been through anything similar. I’ve been doing this type of work for 15 years now, and only in the past year or so did I finally gin up the nerve to tell about my really embarrassing first day in long-term care.

(Short version: I got punched in the jaw and knocked on my butt; my butt was the subject of very loud public commentary, in a completely separate incident; and I made a confused lady burst into tears. All before 4 pm.) And that’s far from my only embarrassing story.

If we all have at least one embarrassing story we’re keeping to ourselves, we help make sure others never know that it’s not just them. We don’t help normalize the experience we’re having–all of us are having–when we keep our experiences secret.

Embarrassing Topics

Embarrassing topics related to the person living with dementia tend to include incontinence, constipation, finger painting, and sexual acting out. There’s also bullying, lewd language, public disrobing, and rude remarks.

Additionally, there’s often embarrassment about not understanding how things work, like the difference between Medicare and Medicaid, between a POLST and an advance directive, or between an elder law attorney and an estate planning attorney.

Unintended consequences

The problem with being too embarrassed to talk about topics related to the person, such as constipation, is that it can have lethal consequences. True story: a man was too embarrassed to say anything about it, and it turned out the constipation was actually caused by a bowel obstruction. He died of sepsis a week later.

If you don’t understand how constipation, bowel obstruction, and sepsis are related or why it can lead to death, that’s okay. There’s no expectation you would. But we’ve got to get over our embarrassment in order to access the information we need.

Same goes for not understanding some of the finer points of technical jargon or geek-speak. I’ve had far too many conversations with stunned families who mistakenly believed Medicare pays for long-term care. (It doesn’t. No matter what your neighbor says.)

Questions You’re Too Embarrassed To Ask

Broadly, these fall into four subcategories: Why do they DO that?! about behaviors;  Is this normal? about behaviors or disease progression; How much longer does she have? regarding disease progression–always asked timidly and with apologies; and, But what if we can’t afford that? concerning various treatments or care options.

Because you’re too embarrassed to ask, I’ll draw on questions I’ve been asked over the years by brave souls who got over it and just blurted it out.

Why do they DO that?!

This could be about finger painting, or sexual acting out, or any of the embarrassing topics I mentioned above. Knowing the “that” could be anything, you’d think there’d be lots of different possible answers, right?

Well, yes and no. There’s certainly nuance to each specific behavior, and then to each situation and individual involved. But the basic answer is the same for everyone: they do it because it makes sense to them in that moment.

That’s why everyone does what they do, right? If it’s a great decision, you strut about it later, or shrug it off as obvious. If it turns out to be a bad decision, a regrettable choice, you shrug (or cringe) and say, It seemed like a good idea at the time.

Is this normal?

Because most families have very limited experience with dementia, it can be difficult to determine what falls in the realm of normal. If your first baby was colicky, you’d think that’s just how babies are–until you swapped stories with other parents and realized that’s not so.

Just like any other person on the planet, people living with dementia have a wide array of experiences. Not everyone living with dementia finger paints; in fact, most people don’t. Not everyone living with dementia wanders–but 70% ultimately will. Urinary incontinence doesn’t start off as a problem for anyone, but it becomes one for everyone.

In short, there’s a wide spectrum of normal. A good rule of thumb is to ask if you’re unsure, and to never assume that anything unusual is because of dementia–it could be due to a number of other causes.

How much longer does she have?

This is a question I hear from exhausted families. Usually, they’ve been taking care of a parent or partner for several years by the time they ask this question.

We as professionals walk a fine line between bombarding families with too much information and too little. When you’re nine months pregnant, you’re more focused on delivery than prom expenses. On the other hand, it’s probably useful to know that having a kid is an at-least-18-years-under-your-roof experience, right?

It depends.

The disease process lasts somewhere between one and 20 years, depending on the cause. Creutzfeldt-Jakob is very rare and moves at lightning speed; people living with geriatric-onset Alzheimer’s disease can live a very long time (up to 20 years) after noticeable symptoms.

Use a tool.

One of my favorite tools for walking families through figuring out a probable timeline is the FAST scale. A more descriptive tool is the Global Deterioration Scale. Both are great tools, but it’s important to note that no one has a crystal ball, and because the whole brain is under attack, people often die of something other than disease progression.

But what if we can’t afford that?

We’ve all heard the old adage that there are three things that never should be discussed in polite company: sex, politics, and religion. In my experience, people are far more comfortable giving away detailed information on any of those three, rather than even skimming the surface on finances.

No worries–this isn’t an are-you-saving-enough-for-retirement lecture. If money wasn’t an issue, you wouldn’t be asking this question, right? Obviously, I do recommend consulting with a professional about financial planning. That said, what about the here and now?

Be upfront.

First, please be upfront with any professional trying to help you. In working with me, for example, I could recommend a Rolls Royce of a plan for your family–which will be utterly worthless to you if your budget is actually for a Smart car.

Once we know your financial situation, we can help you map out a plan that makes sense for your situation and connect you with concrete, tangible resources. We can’t do that if you won’t talk about it.

Be cautious.

I understand why people would be suspicious, maybe believing disclosing financial information will lead to being taken advantage of. There’s a big difference between sharing a dollar amount and sharing account numbers. (DON’T SHARE ACCOUNT NUMBERS!)

Still, if you’re unclear about why a professional needs that information (or any other type of information), just ask so they can explain it to you. A great way to phrase it is, “Why do you ask?” or “How will that information help you to help me?”

I hope this has been helpful to you! If you have any specific embarrassing questions, send them in and I’ll answer them in a future article–while protecting your identity, of course 😉 Remember, when you speak up, you may very well help someone else.

 

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.