Caring Currents

Image by JohnLeGear used under the creative commons attribution share alike license.

On World Alzheimer's Day, Tuesday, September 21, most people with Alzheimer's disease won't be able to participate in an Alzheimer's Association [Memory Walk] (http://www.alz.org/memorywalk). But they directly benefit from events like these being held around the world.

That's because World Alzheimer's Day events are meant not only to raise funds for research but to raise awareness about Alzheimer's and people with Alzheimer's disease. That makes this World Alzheimer's Day an opportunity for each of us to think about what messages we'd like to give to those who aren't yet affected by this living tragedy called Alzheimer's.

So here are three facts about Alzheimer's that I want the whole world to know:

1. Alzheimer's is not an inevitable effect of aging.

Senility doesn't strike everyone; it's a terrible disease. In a generation, much has been done to change this old public misperception...  Read more

Image by cursedthing used under the creative commons attribution no derivs license.

Is it okay to fib to someone with dementia? It certainly can grease a conversation and add quality to life.

Many people with mid-stage Alzheimer's (or another form of dementia) like to talk, and ask questions. These questions are partly a bid to latch onto bits of memories that have slipped just beyond their reach. They're also an instinctual way of continuing the normal back-and-forth of social discourse – even though what the person with dementia asks, at his or her turn, tends to be the same repetitive thing on a very short replay cycle.

Talking to someone with Alzheimer's who's still conversant can therefore be a little maddening -- IF you let it get to you.

A great lesson in relaxing and having more fun with such talks came one memorable day my family spent with my Dad.

"So are you in a band?" Dad asked my 17-year-old son, who'd brought a guitar to entertain his grandpa.

Image by Max Braun used under the creative commons attribution share alike license.

Stories of how people with Alzheimer's spark to creative activities involving art, music, and literature are fascinating to hear – and even more so to witness. Better yet, arts activities make life less stressful for dementia caregivers, which is why I can't revisit this topic enough.

Some examples:

• When my son played guitar for a group of residents in the dementia wing of a nursing home where his grandpa lived for rehab, one woman prone to violence and wandering restlessly planted herself in front of him to happily dance and dance.

• A friend recently told me her mother, who has advanced Alzheimer's, mostly sits locked into her own silent world, until her daughter plays church hymns on the piano. Then Mom sings every word, clear as a bell.

• Alzheimer's disease turned actress Rita Hayworth anxious, aggressive, and confused – except when she was painting flowers, a hobby she took up latete, and with gusto...  Read more

Image by cogdogblog used under the creative commons attribution license.

If you're like many Alzheimer's caregivers, on some days -- the hard days that follow too many hard days in a row -- you may long for the burden of Alzheimer's care to be over. And then, instantly, you worry this is akin to wishing for a loved one's demise. So you bury such thoughts under guilt and shame, and soldier on.

It might be the ultimate dilemma of Alzheimer's care: How to keep trudging forward when the road gets continually rougher and its end is out of sight.

Few other kinds of caring can be so demanding for so long. Young parents get through the sleeplessness of infancy knowing that eventually a baby sleeps through the night. Parents of teenagers can take solace in the set number of years for this developmental stage. Those with rough jobs can count the years to retirement. Even other terrible chronic illnesses tend not to last the 5, 10, 20 years that Alzheimer's can.

What helps when these challenging reactions strike...  Read more

Image by storyvillegirl used under the creative commons attribution share alike license.

What's worse –- the many challenging dimensions of dementia caregiving, like losing your privacy, worrying, assisting with daily living, filling the long hours, coping with new expenses, the anticipatory grief of watching someone you love change, and family-work stress (to name, oh, a few) –- or the thanklessness of it all?

Feeling taken for granted as a caregiver is incredibly common. Surveys indicate that more than half of all caregivers do. And yes, these understandable feelings are a stressor. What also adds stress: Feeling sheepish when you want to complain about this.

"I know it sounds petty to gripe about not being appreciated," apologized a friend who moved her newly widowed mother halfway across the country to an assisted living near her home. "But every little thank-you is like gas in the tank that keeps me going."

No kidding...  Read more

Image by easyrab used under the creative commons attribution license.

Dear caregiver to someone with Alzheimer's or another dementia: I know February 14 is Valentine's Day. But I'm not going to suggest any Valentine's-themed crafts for your loved one with dementia. Nor am I going to issue reminders that someone with dementia might still appreciate a mushy hearts-and-flowers Valentine, a box of chocolates, or a bright bouquet.

Instead, I'm going to ask some questions that aren't so flowery (but full of heart): Has anyone given you a hard time about your caregiving lately? Have you been accused, say, of spending too much time taking care of one person to the exclusion of others? Of making yourself crazy? Of running yourself ragged? Of the 10 signs of caring too much?

Has anyone uttered that dreaded word burnout?

I had a fascinating conversation the other day about this touchy topic with Caring.com senior medical editor [Ken Robbins] (http://www.caring.com/authors/ken-robbins-m-d), a geriatric psychiatrist at the University of Wisconsin, who knows caregivers and their stresses well...  Read more

Image by chrisbb@prodigy.net used under the creative commons attribution license.

Routine is an effective way to smooth the day for people with dementia. Unfortunately, too much repetition can leave a dementia caregiver feeling like a dog chasing her tail in circles -- or like poor, stressed Bill Murray in the old movie "Groundhog Day," about the man doomed to repeat the same day over and over again.

Fortunately it is possible to snap yourself out of a caregiving rut. Some strategies to try:

• Keep a diary of the highs and lows of your day.

You may think your "whole situation" makes you stressed, but it's more likely that there are some very specific triggers to what makes you especially unhappy – as well as especially happy. Without paying conscious attention, it may be hard to ferret this out. But really knowing your triggers is the first step to being able to change (or protect) them.

• Focus on what you can change, rather than what you can't.

You can't change your loved one's progressive disease...  Read more

Image by Kyle McDonald used under the creative commons attribution license.

Can food reverse or slow memory loss? Some new studies suggest a big… "maybe." But as with hopes for a miracle pill or supplement that can vanquish dementia, "maybe" is a ways off from "yes."

Your first clue to take recent nutrition news about dementia with a shaker of salt is the word "miracle" attached to the headlines, Two examples:

Miracle shake?

Danone (parent company of the yogurt maker Dannon) has been testing a nutrient-dense milkshake called Souvenaid that contains high doses of omega-3 oils, B vitamins, antioxidants, wheat germ, and other nutrients. Initial research in Europe and the U.S. showed limited benefits in language recall among people with mild dementia, but not much other change.

Miracle juice?

In a separate study, wild blueberry juice is fingered as the go-to food of the day. The Journal of Agricultural and Food Chemistry reports that its concentration...  Read more

Image by Foxtongue used under the creative commons attribution license.

If you're caring for someone with Alzheimer's or another dementia, you need several categories of people at your disposal. Among them:

1) Someone to listen: A spouse, a best friend, a sibling –- someone reliably receptive who you can call day or night when you need to vent is a must.

2) A doctor you trust: Especially early in the journey, you want a physician who can tell you what's normal and what's not, and who can help you make the hard choices that dementia diagnosis and care often involves. A geriatrician is usually the best choice if you can find one.

3) Family, friends, and neighbors: Where would any of us be without a circle of dear ones who can provide hands-on help?

4) Knowledgeable experts: Those with expertise can [answer questions] (http://www.caring.com/ask/search?topic_id=ask-alzheimers-and-other-dementias), offer advice, guide you along the way. They're as near as [local resources] (http://www...  Read more

Image by BaylorBear78 used under the creative commons attribution share alike license.

How did you greet the news that a massive, reliable [study] (http://www.caring.com/news/ginkgo-wont-slow-decline-of-aging-brain) discounts ginkgo biloba as a way to prevent cognitive decline or slow Alzheimer's-like memory impairment? Were you disappointed that yet another hopeful Alzheimer's "cure" has proven to be so much ado about nothing?

Hope is a powerful drug -- not only for those beset by disease, but for those who care for them. Losing hope, that buoying belief in the possibility of something better, makes an already-stressed caregiver's road so much the rougher.

That's why hope is worth holding onto, even while caring for someone with a disease like Alzheimer's, where the decline is progressive and the ultimate prognosis is terminal.

Consider -- please! -- these four ways hope can help an Alzheimer's caregiver this new year:

• 1...  Read more

Image by riptheskull used under the creative commons attribution no derivs license.

New Year's resolutions about how you ought to start another diet and ought to be nicer belong back in the Aughts ('00s). For this new decade, caregivers looking after someone with dementia are better off focusing on tasks that will help them power through another demanding year.

The following resolutions may be unexpected, but they're heartfelt and truly helpful:

1. I will order my priorities so that I come first.

Selfish? More like practical common sense, because if you fall apart physically or emotionally, you put the welfare of those you care for in jeopardy.

2. I won't beat myself up if I lose my patience.

Because you know you will. (Both lose your patience and berate yourself for it.) Dementia care can be immensely frustrating. You wouldn't be human if you didn't vent. Try to mostly vent to others with well-functioning brains (or to a pillow or a workout), but cut yourself slack if you occasionally bloop and take it out on the person with dementia...  Read more

Image by Valerie Everett used under the creative commons attribution share alike license.

One of the scariest aspects of caring for someone with Alzheimer's or another dementia is how sorely the job can test patience. Can Alzheimer's care push a person to the limits? Sure. Can Alzheimer's care push a person beyond the limits? That's the question a recent tragic story raises.

The headline is horrible: Vermont Woman Shot and Killed Alzheimer's Mother. Jeanne Sevigny, 59, claims her mother was trying to shoot herself after overhearing her talking about a nursing home placement, and the gun went off in a tussle; prosecutors are calling it cold murder. Motive? In the prosecutor's words: "Annoyance. A drag. Elderly woman with Alzheimer's."

Whatever the facts of the case turn out to be, the prosecutor's pithy summary of late-stage Alzheimer's care might resonate with many caregivers. Even when you love and adore the person (or a version of the person he or she once was, anyway), the relentless demands of late-stage care really do test an individual's strength, resolve, patience, and yes, sanity...  Read more

Image by riptheskull used under the creative commons attribution no derivs license.

With every holiday card you send, do you write about dementia? If you're an Alzheimer's- or other-dementia caregiver, do you take pains to update friends and family about the condition of your loved one when you send Christmas/Hanukkah/Kwaanza/New Year greetings? Or do you just send a cheery message and not mention anybody's cognitive state (except maybe jokes about your own fuzzy memory?)?

Cards from you and your loved one

Season's greeting-card etiquette seems to be divided into two camps: Those who say it's best to keep things heartfelt and cheery without over-sharing -- and those who endorse the longer letter form as an opportunity to keep others informed about the ups and downs of the year.

Seems like more and more of the cards I receive are mentioning parents' and spouses' fragile health status. That reflects our ages, our growing numbers as caregivers (65 million strong, says a [new study] (http://www...  Read more

Holiday stress can soar for caregivers whose loved ones have Alzheimer's and other forms of dementia. And for good reasons: Your own already-bursting to-do load stretches longer than the lines at the post office. Safety worries intensify – the person who has dementia may want to drive to the mall to shop, wander away in a crowded store, or insist on resuming dangerous old habits or activities, like baking or woodworking. You may feel prickles of grief over things the person can no longer do (travel cross-country to visit grandchildren or set up the Christmas tree, for example). Beloved traditions -- especially lots of lights, lots of company -- may now be bothersome or frightening to your relative. And did I mention that longer-than-ever to-do list?

One solution: Help the person keep busy and engaged with repetitive seasonal activities. Repetition that seems tedious to the rest of us is often soothing to someone with cognitive impairment...  Read more

Dementia changes personalities. We all know that. It's natural to mourn the person who once was –- but it's also, I'm afraid, easy to get stuck in that mode. To mostly see what once was, without a full appreciation of the value and pleasure to be found in the altered person who sits before us today.

I was reminded of all this at the recent memorial service for my late dad (who had dementia, though he died of renal cancer). I'd never really thought about the many, equally valid ways of seeing him until I listened to the different reminiscences brought forward that day.

First, we saw a tribute video that my brother John had created. It showed the arc of a man's life, from big-eyed boy on a tricycle in the 1920s through dashing groom, family man (of an ever-growing family), and retiree and widower.

Then I gave the [eulogy] (http://www.caring.com/articles/eulogy-for-sylvester-patyk-by-his-daughter-paula-spencer), retelling the highlights of his life, albeit from the perspective of a middle daughter...  Read more