Tag Archives: aging

Unsolicited Advice on Talking Dementia

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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.

 

“The Wrong Side of 40” or, the Peak of Our Powers

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Mt. Robson, a few hundred kilometres from where I was born four decades ago.

Mt. Robson, a few hundred kilometres from where I was born four decades ago.

At any time in my young adulthood, I could have been found sitting awkwardly breastfeeding, sitting awkwardly writing, or standing outside shoveling. None of these things was easy, none of them was without lasting benefits, none of them was any good for my left shoulder. Not surprisingly, for the first two winters of my mid-adulthood, my left rotator cuff has wound up sprained—weak and sore–by the end of January.

Despite not having done much breastfeeding, my father and older brother have the same repetitive stress injury in their shoulders. When I commiserated with Dad, he seemed like he’d been waiting. “You’re on the wrong side of forty,” he said, recommending his favourite aromatic anti-inflammatory ointment. Every girl dreams of growing old smelling exactly like her even older male relatives. That’s not what I’m objecting to here. It’s “the wrong side of forty”—I’m not yet convinced there’s much wrong with forty.

Come back.

I know. As a younger person, I was irked by forty-somethings marveling about how their lives are better than the sluggish, disease-ridden ordeals they might have been expecting. The more they went on about it, the more pathetic it sounded to smug young me. And hearing 40-year-olds reject the term “middle-aged” when the average lifespan in our country is in the 80s is still annoying. Life does not begin at forty. Counting works. Math is real. Knock it off.

People my age are well and truly half-dead. But for many of us, life has developed into something surprisingly good—surprising to our broke, baby-bitten twenty-something selves with piles of student debt.

A lesson known to fortysomethings who won’t stop crowing about enjoying life is the realization that, “It won’t last” –whatever “it” is. The wisdom is bittersweet, delivering comfort and demanding resignation at the same time. Is that what maturity means?

Anyways, here are a few things in my life that didn’t last–for good, for ill, for real. [Keep in mind I can only speak for myself—that’s what a personal blog is for–and I didn’t craft this list to make anyone feel badly about theirs. I have one life and it reads like this.]

My kids’ baby-years didn’t last. When I was a new mother–25 years old with two little boys–I got weary of older parents urging me not to wish the boys’ babyhoods away. They were difficult little dudes and I wished their babyhoods away pretty much every minute they were awake. My friend Jeannie—a lady my mum’s age—saw into my black heart and promised me my kids could grow up to be my best friends. It’s turning out to be true. My kids and I hacked our way through their babyhoods to their personhoods. There are still two elementary students in our household keeping us deep in Kidsville. But I can go for days without having to see their butts and I’ve learned to laugh off what might have made me cry when I was a difficult young mother. For instance, with my oldest kid now studying chemistry at university, I have the track record and confidence to tell our grade two teacher that six worksheets of homework is too many, we’re only doing two, and no one’s future will be destroyed.

Youthful looks don’t last. I didn’t come out of the child-bearing years in the same physical condition I went into them—which is actually fine since I began motherhood looking like a 16-year-old, raking in all sorts of pitying disapproval from strangers. I’ll spare us the details of my decline. Suffice it to say, my mother-in-law—who’s is in the early stages of dementia–keeps being surprised that my skin looks so different now than it did when we met the summer I was twenty-one.

“Did you get a sunburn? Did you get hit in the face?”

“No, Sweetheart. We’re just old now.”

In some ways, I’m healthier than ever. My kids getting old enough for me to ditch them didn’t do a thing for my bad shoulder but finding time to work-out means I can outrun—literally—the diabetes, high blood pressure, and knee problems that would have come with being overweight in a half-spent body.

Trends don’t last. I can calm the frick down about how people and things are decked out. When we moved into a house decorated in early 1990s brass and oak last year, I didn’t panic and start redecorating. Brass is already back. Oak can’t be far behind—and even if it’s not, what do I care? Best of all, my favourite boots from the 90s are back in rotation in my wardrobe, authentically vintage.

Being flat broke didn’t last. When I was 28, living with three kids in a two-bedroom Fort McMurray apartment complex where people sometimes got stabbed, I used to say all I wanted of the comforts of life was a dishwasher, a second bathroom, and the ability to buy whatever goodies I wanted at the grocery store. Fait accompli.

The generation older than mine won’t last. The Baby Boomers haven’t been the easiest generation to follow through history but that doesn’t mean we want to get rid of them. So far, more than anything that’s degenerated in myself, the progression of my parents and parents-in-law into illness, disability, and death has been the most difficult part of growing older.

A few things have lasted. My husband is still with me, with all his teeth and hair, without his appendix.

My stories have benefitted from aging as well. When I was in my 20s, childfree, too broke to do anything but stay home reading and writing, I was frustrated at not having much to say. I wrote brutish poetry because it was short, well-suited for venting burst of poorly-formed literary energy. My voice had potential but most of what I wrote lacked the substance I knew I wanted to invoke. It took me a long time to be able to write fiction that didn’t make me cringe. The stories I wanted to tell came the only way they could for me: slowly.

But then, looking back and looking ahead from this point I hope is the middle of my time, nothing about four decades seems slow at all.