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Thursday November 19, 2009

How to Say Thank You to a Caregiver This Thanksgiving

Vintage Thanksgiving Day Postcard
Image by riptheskull used under the creative commons attribution no derivs license.

As if next week's national day of giving thanks (Thanksgiving! Thursday!) weren't reason enough to express gratitude to those who care for relatives in need, it's also National Family Caregivers Month.

I know I'm preaching to the choir -- of course you realize you deserve a pat on the back! -- but maybe if you express gratitude to a fellow caregiver, it'll come back around to you. (And maybe your relatives or friends will read this with you in mind.)

Some ideas:

Thanking a family member…

Mention caregivers by name in the Thanksgiving counting of the blessings. Many families, before they feast, take inventory of all they have to be grateful for. Be sure that those who are caregivers aren't left off the list.

Give the gift of a day off. But don't just offer vaguely and wait for the caregiver to take you up on it. ("If you ever need help with Mom, Dad...") The person may feel uncomfortable reminding you of the offer later...  Read more


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Tuesday November 17, 2009

12 Family Movies to Watch This Holiday Season With Someone Who Has Dementia

beatrix potter
Image by piddy77 used under the creative commons attribution license.

Looking for a holiday activity someone with dementia can enjoy with the whole family, including kids, during the upcoming holidays? An intergenerational movie is a stress-free way to share time and togetherness.

Here are 12 family movies to consider, organized into three categories: newish movies, old movies, and something different.

New(ish) Movies

  • Enchanted

Wholesome, cute, and clever, it starts as a classic Disney princess cartoon, then the drawn characters turn into real actors, including Amy Adams and Patrick Dempsey (who look and sound exactly like their cartoon counterparts). It's especially well-suited for grandmas and granddaughters.

  • Up

A 78-year-old homebody flies away with an 8-year-old; the perfect plot for an intergenerational showing.

  • Miss Potter

Renee Zellweger stars as children's author Beatrix Potter, and Peter Rabbit (in cartoon form) makes surprise appearances...  Read more


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Thursday November 12, 2009

What Every Caregiver Knows: Love Is a Verb

Dad.me.7.18.09

Even though my father just died, I'm not going to repeat the relationship-building advice that caregivers hear so often: to tell your sick or aging mother, father, husband, wife, grandparent, other relative, or friend, now, while you can, and at every opportunity --- hurry, hurry, hurry! --- how much you love them.

Because if you're a caregiver, they know. Say the words because you can't help saying them, not because you feel you're supposed to.

Full disclosure: This is coming from someone infamous in her family for loathing to say, "I love you." I'm not averse to the sentiment –- far from it! –- only to the thinning of its meaning when the words are tossed off too casually, too robotically, too often, as has become the modern norm. (Pet peeve: The perfunctory "Byebyeloveyou!" at the end of every phone call.)

When I hear, or say, "I love you," I want the words to be fully intentional...  Read more


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Tuesday November 10, 2009

A Parent's Death Is Never Expected, Even When It Is

2006.Paula
Image courtesy of Paula Spencer.

Neither of my parents died the way I expected they would. My mom went so quickly, just three weeks after a shocker cancer diagnosis, that I'm still absorbing the loss. Now, less than two years later, my dad has also died.

Like Mom, he had cancer (hers bladder, his renal), but also mid-stage dementia, and he'd been recovering from a stroke – so his passing is something I have to say I've been anticipating. Just not last week.

Then again, you never fully expect the death of someone close to you. Parents, having been around your entire life, seem like they'll always be around. They're fixtures -- even when, intellectually, you know better.

Dad's death, for example, snuck up on me despite the fact that he was in hospice. My siblings and I had enrolled him last month because he'd begun having pain at night that interfered with sleep. Given that his cancer was incurable, we wanted to involve good palliative care early so that, above all, he'd be comfortable...  Read more


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Thursday November 05, 2009

5 Ways to Cope With the Emotional Side of Incontinence

Bare Necessity
Image by *clairity* used under the creative commons attribution license.

Best to be blunt: Of course it's awkward and embarrassing to discuss a loved one's incontinence with him or her, let alone to have to change adult diapers (a.k.a. adult briefs these days). Private matters turned team project usually are.

Unfortunately, the net effect of nobody wanting to talk about his or her adult diaper stories is stressful caregiver isolation. A new survey on dealing with incontinence by Caring.com and SCA, makers of Tena incontinence products, finds that one in three caregivers avoids discussing the subject with a loved one altogether because it's too "embarrassing and difficult." (Most of the 500-plus respondents, all caregivers with incontinence-care experience, were boomer-age women.) And 42 percent say they get depressed about dealing with a loved one's incontinence.

That's a disheartening conspiracy of silence. It's also a silence that prevents worn-down caregivers, as well as those struggling with incontinence, from getting the help they need...  Read more


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Thursday October 29, 2009

SelfCare: 7 Things To Do When You're Stressed to Wit's End

Hearty Tea Pot Set by MollaSpace
Image by MollaSpace used under the creative commons attribution no derivs license.

Caregiver stress has no shortage of causes. But sometimes you hit a tipping point: On top of everything else, you get swine flu. You get into an argument with a sibling or an insurance company rep. Or there's a new diagnosis (on top of the two or three other chronic conditions you're helping a loved one manage). And there you are, seriously wondering if it's possible for a human head to explode.

Rest assured, it can't! Try these seven ways to buy yourself time to regain a little sanity:

1. Inhale. Exhale. Repeat.

"Keep breathing," a yoga therapist friend always urges me when I get to that mush-on-the-floor point. The slower and deeper the breaths, the better.

Tracy Gaudet, the physician who directs Duke Integrative Medicine, taught me a handy force-yourself-to-slow-down breathing pattern that she learned from her former mentor Andrew Weil:

4/7/8 Breathing (Paced Breathing)


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Tuesday October 27, 2009

Is It Ever Okay to Laugh About Alzheimer's?

Selma: "Hahaha, that's hilarious!"
Image by netzanette used under the creative commons attribution no derivs license.

Let me say straightaway that Alzheimer's isn't funny. And yet… there sure are plenty of moments that make you want to laugh. Or me, anyway.

No doubt dementia is a horrible affliction, in the progressive way it erodes the memories and connectedness of someone you love. But it's exactly that long slow progressiveness, the years of everyday living situations, that present so many opportunities for absurdity and comedy —as well as so much need for stress release. And laughter (even cracking a smile) really is a proven stress reliever with healing benefits.

Many people cringe at the idea of finding anything remotely lighthearted about their dementia stories, and I respect that. Humor is a pretty individual taste, too. The black humor batted heartily around in some families (mine) is seen as distastefully verboten in others.

Before you strafe me with indignant comments over daring...  Read more


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Thursday October 22, 2009

Beware an Unexpected Source of Caregiver Stress

A lonely rose...
Image by HAMED MASOUMI used under the creative commons attribution license.

As caregivers, we're often hardest on ourselves, trying to live up to impossible standards of "doing it all," "doing it right," and so on. But sometimes we inadvertently make the load even more strenuous -- by doing or saying things we believe to be correct in the moment, but which we wind up regretting. And that regret, in turn, adds to our caregiver guilt and caregiver stress load.

I know: It's almost impossible to guess when regret will come back to bite you. In the moment, a choice may seem so reasonable. But since preventing bad moves is one of the best ways to avoid regret over them, I asked around to see what others would think twice about if given the chance. Four main categories of caregiver regrets came up – or at least, four so far!

  • Making promises you can't deliver.

"I'll never put you in a nursing home" is Numero Uno.

  • Making choices not rooted in reality.
...  Read more

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Tuesday October 20, 2009

Forgetting Faces: What It's Like to No Longer Be Recognized by Your Dad

Medad9.09

What could be more elementally human than recognizing people -- the loved ones who feature in all your family memories, the friends you wave to on the street, the special face you wake up to every morning? I can't imagine what it must it feel like when Alzheimer's or another dementia turns those once-familiar faces into blanks.

But I well know about being on the receiving end of a blank stare. I've experienced the strange sensation of not being recognized by your own parent.

Intellectually, you understand the day might come. You know it's not unusual that recognizing people will become a challenge for someone with later-stage dementia. But the first time you're called by another name, it jolts. The gulf between you seems to widen.

The first time Dad introduced me as his "sister," my heart sank. It was a confirmation of what I'd long suspected, that he only vaguely got who I was. He seems to register me as family (as opposed to a total stranger), but can't quite place me...  Read more


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Thursday October 15, 2009

10 Signs of Caring Too Much

No Broken Hearts
Image by Mykl Roventine used under the creative commons attribution license.

Compassion fatigue -- a.k.a. caregiver burnout -- is what happens when a well-intentioned caregiver crosses a hard-to-see line from One-Who-Helps to One-Who-Needs-Help. And it can happen to anyone. It happens precisely because you care so much.

Are you at risk of caring "too much"? Here are ten warning signs:

1. You use words like "always" and "never" with regard to caregiving.

Beware falling into absolutes: "I promised Mom we'd never put her in a nursing home." "I'm sorry I can't go to lunch because I always feed Sam by myself."

Being overly rigid can put you at risk for burnout.

2. Your friends seem to have stopped calling.

You may be feeling isolated or annoyed that your old circle no longer seems to check up on you and how you're faring...  Read more


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Tuesday October 13, 2009

Alzheimer's Phone Problems: Little Object, Big Headaches

Phone Struck by Lightning
Image by david.nikonvscanon used under the creative commons attribution license.

Sometimes it's the little things that get you with Alzheimer's. Phone challenges, for example. Difficulty using the telephone is an early sign of Alzheimer's disease. But even once you already know someone has dementia, phone issues can be an ongoing source of trouble.

Any of the following "ring a bell" in your house?

  • Not recognizing the voice on the other end.

Before she died at 99, my grandmother's deafness had made our weekly phone calls harder as the years went on. But between my shouting and repeating, we somehow managed to have a talk that made us both feel good. Then sometime in her early 90s, Alzheimer's disease made her less likely to answer a ringing telephone, and when she did, she didn't always understand who I was. Eventually it got too hard, and looking back, was sadly the factor that changed our relationship most.

  • Not recognizing the phone.

Another personal story: My siblings and I began to expect the same drill every time we called home...  Read more


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Thursday October 08, 2009

Caregiving Stress Buster: Your Top 10 Pet Peeves

Stress
Image by Dave-F used under the creative commons attribution license.

Here's an unexpected cure for caregiver stress: Complain about it. Yes, go ahead and dwell. Vent. Gripe. Grouse. What drives you crazy? Make a list of your top 10 pet peeves and see if it doesn't give a twinge of satisfaction to get them out and corral 'em in one place.

The most common pet peeves about eldercare (and the stress of eldercare!) probably look a little different for every caregiver. What's important: Giving yourself permission to have such a list in the first place!

"It's the little things that get to me," one stressed-out caregiver admitted to me recently (thus inspiring this list). Like, of all surprising things, not being able to cook the way she used to. Since her dad moved in, she's had to simplify recipes (he doesn't like mushrooms, onions, green peppers, most other vegetables, fish, pasta, or salads). She must season less (he can't have salt and doesn't like spices)...  Read more


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Tuesday October 06, 2009

Is It Okay to "Spy" on a Relative With Suspected Dementia?

Giubilei's
Image by Monica Arellano-Ongpin used under the creative commons attribution license.

Say you notice signs of dementia in a loved one who doesn't live with you. What's the best way to get a fix on what's really going on?

"Only her hairdresser knows for sure" is the punchline of an old hair-dye commercial. It may also be a clue to deciding how your relative with suspected Alzheimer's or another dementia is truly faring.

A new study showing hairstylists are often privy to older clients' health issues reminded me of a heated family debate I once witnessed among long-distance family members over what was really going on with their mom. Alost 90, she'd been showing signs of dementia or some other cognitive trouble:

  • One faction was in flat-out denial. Nothing was wrong with Mom! She still went swimming, bought groceries, made it to church most Sundays, and most importantly, assured everyone she was "fine."

  • One faction relied on firsthand observations. Trouble is, no one was able to visit terribly often...  Read more


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Thursday October 01, 2009

Caring for a Spouse? 5 Reasons Stressed Spousal Caregivers Miss Out on Help

Old Couple
Image by bravenewtraveler used under the creative commons attribution license.

Stress and isolation are risks for all caregivers, but those who are caring for a spouse can be especially vulnerable. Factors unique to being a spousal caregiver raise the odds that someone in this situation will miss out on helpful resources –- and in turn raise his or her own risk for depression, disease, and even death.

(Though research shows that risks vary by age, gender, and the spouse's condition, they exist whether the spouse is caring for a husband or wife with dementia, cancer, heart disease, stroke, or other illnesses and disabilities.)

Obviously not everything about caring for a husband or wife who's ill is grim. But the grim parts can be as dangerous as they are often overlooked.

If you're a spousal caregiver, please consider the following factors that point to a need for giving in to more help, not less...  Read more


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Tuesday September 29, 2009

Baby Love: Therapy for Alzheimer's Sufferers

Blue Bead...
Image by Kıvanç Niş used under the creative commons attribution license.

Caregivers rightly have an aversion to treating older adults like children, even when the effects of dementia render them child-like. But here's a wonderful exception that Alzheimer's patients enjoy: Try giving a woman in the later stages of dementia a baby doll.

Surprisingly, an "Alzheimer's baby" helps someone with dementia feel like a functional adult (not a patronized child). And that brings feelings of satisfaction, pleasure, calm, and accomplishment. Cuddling a doll soothes and entertains, reducing aggression. Pretty good, as dementia activities go.

I'll never forget bringing my daughter Page, then about 15 months old, to her older sister's Brownie troop outing at a local nursing home. Page was in a huge baby phase – she gravitated toward babies, whether real, toy, or pictured in board books. So of course she quickly noticed the elderly resident sitting in a corner with a baby doll in her arms...  Read more


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