Unsolicited Advice on Talking Dementia

brainAs a staff member, volunteer, friend, and family member, I’ve spent a lot of time in seniors’ care homes. I like being there, but it is a challenging environment. Of all the struggles people who need to go into this kind of care have, the worst may be dementia. In the homes I’ve visited and worked in, I’ve never seen anyone treat a dementia patient unkindly, but I have noticed a few well-meant sorts of comments that backfire and cause them anxiety. Inspired by my sister-in-law’s recent blogpost on how to talk to deaf people (yes, go read it), here are a few tips on how to talk to people with moderate dementia.

Laugh and have fun, but don’t make jokes that rely on sarcasm or any other kind of communication not meant in an absolutely literal sense. It’s confusing and not worth it. The aides at my family member’s care home have a running joke about getting in and out of the residents’ suites through secret passages. Cute, until residents ask their families to bring in crow bars so they can tear up the carpet and find the passageway.

Don’t admire their possessions too enthusiastically, even if it’s only to make conversation or be polite. Dementia can frame compliments as conspiracies. The patient may initially seem pleased but the more they dwell on the compliment, the more they may begin to suspect someone might be out to take their nice things for themselves. This gets complicated, especially if they hide treasured objects in safe places, forget they’ve done it, and then the stuff may as well have been stolen.

On the other hand, they may be so pleased with a compliment that they offer to give away an object someone has admired. These offers must be refused. Most care homes have policies against staff accepting residents’ possessions as gifts and with good reason. As another one of my sisters-in-law says, people with dementia remember concrete things better than they remember abstract conversations. They may forget that they offered something and be distressed when they find it’s missing and can’t remember how they came to part with it. So leave everything where it is. Don’t even borrow anything. Leave it.

Wait rather than finishing their sentences. Conversation is hard when familiar words just won’t come. Speaking a first language becomes more like speaking a second language, where if everything would slow down a little, the dementia patient would do much better. Be clear and slow and specific. Pause even if it means sitting through silences, waiting. While waiting for the patient to find the words, don’t say much more than a few words of encouragement, like, “Take your time. It’s okay.”

Stay positive. This sounds outrageously trite but being in the moderate stages of dementia, when patients understand their minds are slipping but can’t do anything to stop it, is depressing for everyone especially the patient. This depression feeds off the frustration and grief of other people. When the patient is in a good mood–even if it’s a bit wacky, even if we’re not in a good mood ourselves–go with it. Be delighted in their happiness and relieved their clouds have lifted. Sometimes, they even want to laugh about the strange things they’ve said or done. Keeping laughing with them. Laughing together makes things feel normal again.

But we won’t always be able to stay positive. If we felt no pain or grief at the changes in our loved ones, we’d be less human. None of us has perfect control of powerful feelings like these and forgiving ourselves for our lapses is part of the lifestyle of someone helping in the care of a dementia patient.

Don’t expect too much late at night. Energy ebbs and flows during the day. By afternoon nap time and late in the evening, it’s spent. Being exhausted makes it impossible to maintain the peak presence of mind a dementia patient may be able to muster in morning and at dinnertime. Personally, as much as possible, I insist on morning time slots for my loved one’s appointments so she can be at her best.

Listen to their concerns. Their concerns might be unfounded in reality [see the secret passageway]. They might be more like obsessions, repeated over and over again. Listen anyway. Only force questions on them if the false concerns seem to be upsetting them or could start rumors that pose a threat to other people. When questioning, try not to argue. Act like a careful, well-mannered lawyer leading a witness to give evidence. Provide their story with a map of reality to fit into, then stand back  a little as they find their own way to make it fit.

A friend contacted me after I wrote this to share her experiences dealing with a loved one with dementia who kept asking after family members who had died, expecting them to still be around. To avoid devastating patients with the “news” of deaths, my friend recommends just redirecting them with, “They’ll be here later.” If you’re a spiritual person, it’s true, in its way.

In cases where concerns deal with what patients might have done to bring dementia on themselves, assure them it’s not their fault. Diseases like alcoholism and syphilis are indeed connected to both patient lifestyles and dementia. But most dementia patients don’t have those kinds of risk factors. Unfortunately, well-meaning tips for younger people about avoiding dementia–stuff about reading, learning a second language, doing Sudoku–have been taken by some very dim and silly people who don’t understand the difference between correlation and causation to mean that dementia patients must have been mentally inactive and lazy during their younger years, and that people who don’t get dementia are better people than those who do. This is not at all true. It’s offensive and shameful when people without dementia say it, and heartbreaking when people with dementia say it. Let’s all agree to never say it again.

 

What Not to Say About My Sick Family Member

In an eerie coincidence, the same week my book was published – a family saga with the word “death” right in its title — a close family member was diagnosed with a serious illness.  It’s a liver disease that’s been seen in our family before with fatal results.  Though not hopeless, it is at best an extremely difficult crisis.  It is the boogeyman.

We’re not the kind of family to hit the social media circuit with alarming, heart-wrenching announcements.  We suffer best in intimate surroundings.  But as time goes on and the disease muscles its way into everyday life, it becomes necessary to tell people outside our inner circle why things are changing.  Some of the people who should respond with the simple sympathy and support we need choose another route.  They respond with unwanted, quack-tastic theories and advice about what went wrong.

Questionable health advice is part of social life in the Google age.  When it’s aimed at me – a healthy person just entering mid-life – I can grin and listen to it.  If an idea is important to my friends, I can make it important enough to me to bear a thorough, good-humoured airing of it.  That’s empathy.  But when Google-lore is leveled at my loved one’s acute health crisis, it becomes a different matter entirely.  Suddenly, the onus is no longer on me not to be callous about my friends’ attachments to their pet beliefs.  It’s now on them not to be callous of my grief and anxiety.  That’s empathy.

I understand that no one I know has any malicious intent toward sick people or their loved ones.  At the root of unsolicited advice about magic grease and mega-minerals and super-berries is an earnest desire to be helpful – to give me the information I need to escape the suction of the awful yellow-green vortex swirling in the depths of my gene pool.

And I do have friends and relatives – people with decades of education and experience in both conventional and alternative medical fields – whom I shamelessly pester for unpaid, informal advice on health matters.  The problem isn’t that I’m too proud to seek out or listen to advice.

The problem is the subtext people like me, who are dealing with sensitive situations, can read into well-meant advice.

Let me explain what it sounds like when I’m told by anyone other than an attending health care worker how to save my loved one and myself.  It could be any kind of advice, like do not, under any circumstances, drink sweet, fizzy drinks.  (Yes, someone once told me pop is the worst thing anyone can drink.  Actually, I’d wager mercury is the worst thing anyone can drink – or molten lava, or tailing pond-water, or bleach, or a broken-glass smoothie).  The advice could be warnings never to eat gluten or dairy or red meat or unicorn hoofs.  It could be voicing suspicions about all those sinister vaccines.  It could be nothing more than pushy chatter about positive thinking.

Right now, this kind of advice all sounds harsh and denunciatory.  No matter what anyone intends when they say it, none of this feels like good will to me.  Instead, it’s like being told my loved one deserves to be sick because he’s not as smart as the people on Google and he fricked up his body, like an idiot.

And that’s not true.

Even if it was true, what good would it do to lavish scorn on someone’s choices now that he’s already sick?

So save it.  When someone cracks the door open and makes the darkness of their tragedy visible, don’t shoulder through the gap and start tripping around wreaking havoc in the gloom.  Accept what they’ve shared and tell them, “Oh my gosh, I am so sorry to hear that.”  Sit and listen.  If you can, find out where that sick loved one is and go shovel the snow off his sidewalks. Or tell that struggling friend how it was when you were living in the same kind of shadow.  Say a prayer.  Give a hug.  Shut your face.

“Bring it On” — A Sexist Challenge on Childbirth

“I had a lady friend years ago… who was a mother of several children. She had a bout of shingles. She told me she would rather give birth. I have had shingles. Bring it on.”  — A male friend of a friend on Facebook.com, July 26, 2013

mumjoe

My mother and her first grandchild

Facebook is a hurt-feelings-machine.  It’s an Offense-O-Matic.  It’s a Jerk-A-Tron.  It can make ordinary strangers sound like idiotic, sexist monsters.  We all know this.  However, Facebook is also the only place I can reliably see pictures of my nieces and nephews so, like most users, I have reasons to put up with the website that outweigh the heaps of garbage I find there.  But the comment quoted above – one made in response to a comedy sketch about a bogus medical device that transfers the pain of childbirth contractions from mothers to fathers — reads as particularly loathsome to me, even by Facebook standards.

When it comes to empathy for the ordeal of childbirth, I prefer quotations like this one:

“I’m sorry.  I didn’t know it could be like this or I would have told you.”

That’s what my mother said to me moments after my first son was born.  She didn’t say it because she was ignorant of childbirth and hadn’t worked hard enough to prepare me for it.  She had borne seven children herself and been frank with me about her experiences.  She knows much more about childbirth than most people will ever know.

But my mum was still shocked at how differently childbirth unfolded for me.  Unlike Facebook-Shingles-Man, there’s no bravado, nothing dismissive or smug in her response to my very personal passage to motherhood.  Standing at my hospital bedside, Mum knew my labour had been twice as long as any she’d ever had.  She had watched me struggle with the second stage – the pushing part where things usually developed quickly and fruitfully for her.  For me, it went on for hours, until the whole debacle finally ended in a traumatic, complicated delivery of a baby whose size was so out of proportion with mine that the doctor had said, “I can’t believe he was in there.”  My mum knew if we hadn’t been in a modern hospital that night, it would have been the night that I died.

Shingles.

My son’s birth was not what my mother had expected – and that was something I hadn’t expected.

Birthing a child is different for everyone, even closely related people like mothers and daughters.  And every time I had a new baby, his delivery was different from the other ones I’d weathered.  I don’t know why.  Maybe it had something to do with my age, the babies’ sizes, the tides, the placement of the pins in some Voo Doo doll – I don’t know.

Apart from physical differences, childbirth medical interventions also vary based on where we are, who attends us, and our personal choices.  My boys were delivered by four different doctors plus a boomtown nurse left alone with me while a fifth doctor was on lunch.  Even though I asked, none of my deliveries worked out so I could have much pharmaceutical pain relief.  Every time my children were born, I was right there for all of it – mind, body, and soul.  That’s certainly not the case for every mother.

Our bodies are different.  Our surroundings are different.  Our babies are different.  In addition to concrete factors like these there are innumerable emotional, social, cultural and other issues colouring our childbirths – enough factors to keep the experience infinitely variable.

I think the case of shingles is actually a good example of how social and psychological factors exacerbate suffering.  My mum taught me this too.  Only for her, it wasn’t shingles.  When I was an elementary school kid, she was hospitalized for kidney stones.  She said it hurt a lot, like having a baby, only there was nothing to hope for at the end of it.  There was no mounting sense of love to convince her that the pain was meaningful and worthwhile.  In light of that, I’m sure she, like Facebook-Shingles-Man’s “lady friend,” would have said she’d rather give birth than pass her stones.  Birth is hard but, unlike disease, it isn’t a bad thing.  Heck, I’ve been mired in arguments so painful I would have rather given birth than listened to another word of them.  But that doesn’t mean the experiences of birth and disease, or birth and a nasty argument, are equivalent.  What it does reveal is that the meaning of suffering affects our perceptions of it.

And there’s far more to withstand in childbirth than just pain.  There’s also fear and panic.  Birth is scary.  For some of us, the fear grows worse every time.  I was nervous when I was admitted to the hospital the morning of my first labour.  But by the time I arrived in an ambulance for my fifth labour, I was terrified – phobic and crazed.  No one in the comedy sketch that started me on this tirade had any comic device for transferring the fear of childbirth from the mother to the father.  Maybe even they know there’s nothing funny about that.

Yes, I get punchy when I hear people talking about birth as if it’s some kind of syndrome – a universal experience we all live through in exactly the same way.  I get especially punchy when that person is a man out to appropriate the most powerful and sublime of female powers for himself by equating it with a disease he’s suffered.  Clearly, what Facebook-Shingles-Man said was sexist – disgustingly so.

And then it’s more than sexist.  It would have been offensive even if it hadn’t been a man who’d said it.  What arises from the bad assumption that birth is the same for everyone is the worse assumption that we’re qualified to evaluate and pass judgment on each other’s reactions to childbirth – or anything else we suffer.  Looking at somebody’s suffering and joking about it or daring them to “bring it on” is never a decent thing to do.  It’s a perversion of empathy.  It’s a mistake my mum – someone wise and acquainted with the breadth of human experience called motherhood – taught me never to commit.