Fight, Flight, or Meltdown?

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caregiver-burnoutI probably composed a 2,000-word post in my head earlier this evening as I drove home in tears – and now I’m having a hard time putting together a sentence! My eyes are burning, I’m exhausted, nauseous, and I wish I could run off to a deserted island until February.

It was this time last year that really marked the final decline for Mom. We’d hit a low point in September, but then she came back just a bit – enough to give us some hope. That, however, didn’t last long.

Detour Ahead – or Not

Over the past couple of months, I’ve tried so hard not to get weighed down with sad memories and heartache. Now that November is here I think it’s catching up with me. Each day, I find my thoughts wandering to last year at this time, and to be honest, I’m not sure that continuing to push the thoughts away is the right thing to do.

All of the grief experts seem to agree that the only way to heal is to walk through the pain; they say continued attempts at taking detours will fail.  I imagine it’s true; after all, it makes sense, doesn’t it? The more you try not to think about something, the more prevalent the thoughts become.

Strength, Weakness, Life, and Purpose

I want so badly to be that strong, in control, (mostly) put together person that others admire, but damn sometimes it’s hard – hell, sometimes it’s downright impossible. Today, despite my best efforts, a major meltdown ensued.cropped-temp-collage-001.jpg

There are times when I get annoyed with myself for not being “over it” by now, but in thinking about that today I realized something.

Mom was sick for almost ten years and had most assuredly started to decline even earlier. That’s a long time to live with the fear, uncertainty, and stress that come with this disease. It’s years and years of living on edge and constantly walking on eggshells. It’s all consuming…  so, no – 11 months after her passing, it doesn’t all just fade away. I guess I’m still trying to figure out what my life is, post-Alzheimer’s.

Now more than ever, having a purpose is vital to me. The status quo just doesn’t cut it.

A Long Road

Truthfully, I don’t miss Mom any less; in fact, I think I probably miss her more now than ever. It occurred to me that I don’t even remember the last time I was able to sit and have a real conversation with her.

me-mom-xmasFor my entire adult life, she was always the first person I’d call when something great happened – or when something was wrong. Whatever it was, she was there – to celebrate, to console, or to provide words of wisdom.  And then as I approached my late 30’s, she wasn’t there anymore, at least not in that sense – she ceased to be my rock and I gradually became hers… or tried my best to be.

That’s what makes dementia such a unique and particularly cruel disease; you lose them over and over and over again. And oddly, you’re fooled into thinking when the end comes, you’ll be fine because you’ve been grieving for years.

One day you realize that was all a giant fallacy. The new grief – the “final” grief – is fresh and real, and it leaves you raw for a very long time.

A Word on Sympathy

In short – I don’t want any. Sympathy, that is.

One thing I’ve found in the past year or so is that the caregiving community is much larger than I could have ever fathomed. We’re a club of sorts – as I like to say, it’s a club we didn’t necessarily seek out, but here we are.  I write for myself and I share in the hope that someone may read my story and feel a little less alone…

At the end of the day, that’s what it’s all about.

Sensible Strategies for Coping with Sundowner’s

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clockThat pesky biannual time change wreaks havoc on all of us – it never ceases to amaze me how much one little hour can throw my body clock into a tizzy.

Anything that rough on us has to be exponentially more difficult for those living with dementia. The autumn change seems particularly challenging since it means the sun is setting so much earlier.

Sundowner’s

Sundowning is a term commonly used to describe a marked increase in confusion and agitation in dementia patients as evening approaches. Experts have long debated exactly what causes this phenomenon, but no one has a definitive answer.

Many believe the decrease in light is a big part of the equation, while others feel Sundowner’s may be due to hormonal changes occurring at night or even just simple fatigue. There are also those who think the symptoms could be caused by an accumulation of sensory stimulation from the day, causing an “overload” of sorts and resulting in stress and anxiety.

Six Ways to be Proactive

  • sunny-autumn-dayIdentify triggers. Limit outings, visits and other highly stimulating activities to morning or afternoon. Keep noise and commotion to a minimum in the evening; turn off the television and consider playing soft music instead.
  • Avoid afternoon naps. Too much sleep during daylight hours can confuse the body’s circadian rhythms. Plan daytime activities and encourage light exercise to help expend excess energy in a healthy way.
  • Watch their diet. Limit sweets and caffeine to morning hours. Some people also do better having their heaviest meal at lunchtime and opting for a light dinner.
  • Maintain a consistent routine. Dementia patients do best when kept on a schedule. Routine and structure go hand in hand with a feeling of safety and security. Keep meals, showers, bedtime, and wake time as consistent as possible.
  • Be cognizant of the environment. Clear excess clutter, which can contribute to the agitation caused by sundowning. Consider the fact that even seemingly benign objects like mirrors and photographs can frighten or confuse someone with dementia. Before dusk falls, close curtains and blinds and turn on as many interior lights as possible.
  • Ensure their physical comfort. Hunger, thirst, and pain will increase anxiety and fruitagitation. Offer a light healthy snack and be sure they’re hydrated without overdoing liquids close to bedtime. See that they are dry, and keep the room/house at a comfortable temperature. A sudden spike in agitation could also indicate the presence of a urinary tract infection or another ailment.

 Tactics for When All Else Fails

It’s important to know that despite the best laid plans, sometimes there’s simply no avoiding it. It’s a fact – staving off Sundowner’s is one part art and one (or more) part luck. There are a few things that may help, though.

  • Redirect. If you notice increased activity or pacing in your loved one during evening elderly-womanhours, attempt to redirect them to quiet activities such as working puzzles, folding washcloths, or listening to music. If they insist on pacing, allow them to safely do so; never try to physically restrain them.
  • Provide reassurance. Speak in a soft, soothing tone letting them know that everything is okay. Avoid arguing – it will only make things (much) worse.
  • Touch does wonders. A gentle massage or backrub, or even just sitting and holding his or her hand, can bring a sense of calm.
  • Do your best to keep your cool. Patience can be in short supply at times like this, but remember your loved one will sense your stress, which often adds to their agitation.
  •  Seek help. It may help to keep a journal for a couple of weeks to try and identify patterns. If sundowning becomes increasingly problematic, discuss your concerns with the doctor. Medication may be considered as a last resort.

Maintaining Perspective

autumn-colorWhen frustration is getting the best of you (and if you’re human, it will), try to remember they are not acting out intentionally. Don’t take their words or actions personally.

The most important thing is keeping them safe; beyond that, it’s often best to follow their lead. Sometimes my mom didn’t want anyone talking to her but appreciated holding hands; at other times, she just wanted to be left alone to pace. And to be quite honest, there were moments where there was just no consoling her – those were the most difficult. A feeling of helplessness like nothing I’ve ever experienced.

It all comes part and parcel with the disease and all we can do is our best – whatever that is at the moment.

How have you dealt with sundowner’s? Can you offer any advice to other caregivers? If so, leave a comment. I’d love to hear from you!

Gratitude

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grat·i·tude noun \ˈgra-tə-ˌtüd, -ˌtyüd\
: a feeling of appreciation or thanks

In November, as Thanksgiving approaches, the word “gratitude” seems to be popping up everywhere. It’s a shame we don’t focus on our blessings as much as we should year ’round, but I’m thankful to be surrounded by reminders this month.  autumn

Even under the best circumstances, it’s easy to get caught up in the crazy pace, endless demands, and mind-numbing routines that tend to define life in the 21st century. The danger, of course, is that we become oblivious to the little miracles that surround us daily.

And Then There’s Caregiving

Let’s keep it real here – when you’re a caregiver, gratitude can be hard to come by. You’re pulled in a million directions, stressed to the max, and you often find yourself just trying to keep your head above water. You’re likely faced with some of the most difficult decisions of your life and each step forward leads you deeper into the unknown.

The days of being proactive are a distant memory – these days, reactive mode is the norm. To add insult to injury, you’re watching someone you love dearly slip further away with each passing moment.

It’s easy to see why gratitude isn’t the foremost thing on your mind…

Conscious Cultivation

autumn-leavesAs hokey as it may sound, the truth is gratitude has the power to get us through the most challenging of times if we just make a small effort.

Several months ago, I wrote an article for Caregivers.com discussing the idea of “cultivating gratitude”. It’s all about being aware of the world around us and realizing even in the seemingly mundane, there are great blessings.

November is the perfect time to give this a try. Each day this month, take just a few minutes in the morning or right before bed to jot down a couple of things you’re thankful for. There’s plenty of inspiration at every turn, and you can even join a group of 6,000 or so new friends in the KindSpring 21-Day Gratitude Challenge beginning November 7th.

Happiness is not what makes us grateful. It is gratefulness that makes us happy.  -Brother David Steindl-Rast

It’s a Journey

What do you have to lose, right? Give it a whirl and see if you don’t notice your outlook is a little brighter and you’re consciously experiencing more moments of joy.

Remember that some days, you may really have to dig deep to find just one thing you feel grateful for. It’s not always going to be a big-ticket item; in fact, most often, it will be something small.mom hands

  • Having 20 minutes to enjoy your coffee before the rest of the house wakes up.
  • A smile from the loved one you’re caring for.
  • Your warm bed on a cold night.
  • The fact that Mom ate her lunch.
  • The scent of a favorite candle.

Perspective

In hindsight, with it all said and done, I truly believe our Alzheimer’s journey taught me that the little things in life really are the big things. I’m not saying I walk around in a state of euphoria all day long (I wish!), but it’s all about perspective.

In my case, it’s an ongoing process; I have to consciously remind myself of what’s important and of my many blessings. In fact, I’m using the 21-Day Gratitude Challenge as motivation to get back into the habit of writing down the things I’m thankful for each day.

Join me in the challenge and let me know how it goes!!