Jun 14, 2018

Dementia Care Here is the Silver Lining in Losing Your Temper

It takes the patience of a saint to deal with many of the odd, frustrating, STRESSFUL behaviors of dementia.

Forget Me Not

by Paula Spencer Scott
Alzheimer's Reading Room

Um, I'm no saint.

I admit it: I've groused, "Dad! I just told you!" after he asked the score for the tenth time in five minutes.

I've argued with my father-in-law that no, his "new bride" (imaginary) was not "coming any minute in the Buick," even though I knew his frontotemporal dementia was behind his frequent delusions and hallucinations. I've walked out of a room when I couldn't stand any more crazy behaviors.

Even as I knew better.

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I've also taken my caregiving frustrations out on others—yelling at one of my kids, being unnecessarily snarky to the poor clerk on the phone.

While on the front lines of living alongside dementia, most of us will say or do the wrong thing sometimes. We know we shouldn't. But it happens anyway.

We snap.

But don't beat yourself up. There's a silver lining to that.

First, here's what's really going on
  • "Losing it" may not be a particularly attractive human quality, but it's a natural act. In the setting of Alzheimer's caregiving, it's maybe even an inevitable one.
Blowing up lets you release a little steam. It's not the best way, but it works, momentarily—which is why we keep doing it.

Our irritation seems tripped by something that's happening at the moment -- endless repetition, criticism, stubbornness, lack of cooperation, plain old absurdity. It's often only the proverbial straw that breaks your back (or your sanity), though.

Underlying factors are usually simmering beneath the surface, like:
  • Chronic stress
  • Lack of sleep
  • Frustration over a lack of control or privacy
  • Worry
  • Uncertainty
  • Depression or anxiety
  • Isolation
  • Financial strain
  • Sadness, even a sense of grief
We tend to dump our dissatisfaction on the nearest target, often the person with dementia. "Stress rolls downhill" is how Oprah's favorite life coach, Martha Beck, refers to this displaced aggression.

Here's what it's telling you

The bright(ish) side of losing your temper is that it's sending you a big message: You need more.

Consider that snap to be a wake-up call that you need, and deserve, something that will help you stay in balance a little better.

Here are 6 big things hands-on dementia caregivers often need MORE of, and where to get them:

1. MORE personal time

Whether for 15 minutes a day or a full weekend a month, "respite" or relief from hands-on care is priceless. Even the social butterflies among us need to be alone sometimes to collect our thoughts and recharge. Respite can come in many different forms.

You can ask family: Is there someone who would spell you for half an hour in the afternoons, or take Mom on Sunday drives? Often "hands off" relatives will respond to a very specific request for a specific time.

You can pay for it: An elder companion for even a few hours a week is one of my favorite recommendations, or it could be an aide or other support.

You can find a volunteer, from an organization like Scouts or church, or a neighbor with whom you trade eldercare (like a babysitting co-op).

You can use the services of an adult day program. A good place to start looking is your Area Agency on Aging or local Alzheimer's group.

2. MORE help

Getting stressful tasks off your plate or otherwise sharing the load of care can bring you energy.

What's hardest for you? If bathing is a source of conflict, maybe a hired aide or relative handles it a few times a week.

What might someone else be better at? Maybe another family member will manage the insurance paperwork.

Which of your household chores could be outsourced? Check your to-do list – could a local kid mow the lawn, pick up dry cleaning, or deliver your groceries? Some stores deliver.

3. MORE stress outlets

Having safe ways to blow off steam is a much healthier path to releasing the tensions that can build. While your friends don't want to hear your caregiving woes 24/7, having one or two non-judgmental people you can vent to can be lifesaving.

Just make sure you choose ways to offload stress that are actually good for you.

Not-so-good stress outlets: Smoking, binge-eating, and over-pouring the alcohol.

Great outlets: Movement (good for mind and body), journaling, music, friends, support groups, and hobbies. Note that some you can do with the person who has dementia, weaving it into your daily routines for a win-win.

4. MORE support

While it can feel like nobody in your immediate world understands your everyday life, there are scores of folks out there who do. Support can actually extend your patience and ability to bounce back from hard episodes when you "lose it."

Online forums and gathering places (like Alzheimer's Reading Room) can be a great place to find kindred spirits—for complaining and venting as well as learning new ideas about dementia and care to help you manage better.

Ditto actual support groups or programs, if you can manage to get to meetings; check at local Alzheimer's organizations, hospitals, churches, or universities to find them.

Don't overlook classes, workshops, and talks, even if you don't think you're the "type." You might pick up nuggets of help that can keep you going longer, and more calmly.

5. MORE sleep

Many of us think of sleep as something we can cut back on to fit in the rest of our life. In truth, it's the wellspring of general health, energy, mood, patience, and more. It needs the most protection you can give it.

If mixed-up days and nights or other dementia-related issues are disrupting your own sleep patterns, you must address them. It's not normal. Nor is it selfish to seek medical help for it.

If the person with dementia sleeps well, but you're not, look into other reasons why: Do you have other symptoms? Do you practice basic sleep hygiene? Do you stick to a reasonable sleep routine? Do you wake up refreshed or (red flag) tired? Avoid postponing your own medical check-ups.

6. MORE self-kindness

I'm not going to do the whole nutrition-exercise song-and-dance lecture here. But like sleep, these basics really do fortify you for the long haul. Try walks or gym outings with the person who has dementia. Also preserve time with your friends and your outside interests as best you can (or try to pick them back up if they're lost, even in small ways).

Cook what YOU like to eat sometimes. Listen to music YOU enjoy, too.

A tendency to focus only on the dementia to the exclusion of everything else may be the #1 mistake I see families make. Be kind to YOU.

Yes, this is easier to say than to do!

But… it IS possible, and that's why it bears repeating.

Start by just moving in the general direction of these things, one step at a time. Make a call to explore a resource or form of help. Treat yourself to something. Every tiny bit recharges you.

Paying attention to the message that you might need MORE will pay off big time – not in perfection (we're all only human, after all) but in more patience, fortitude, and kindness.

Paula Spencer Scott is the author of Surviving Alzheimer's: Practical Tips and Soul-Saving Wisdom for Caregivers. Active in caregiver education, she's also the author of a dozen other books. Five close family members have had dementia. See also: Survivingalz.com.

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