Reasonable Expectations: Key to a Happy Holiday

24 Sunday Nov 2013

Posted by Ann Napoletan in Caregivers, Eason House, Expectations, Grieving, Helpful Resources, Holidays, Mom, Ruminations, Tips

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alzheimers, alzheimers expectations, caregiving, dementia, holidays

turkey It’s that time of year, and we’re seeing lots of tips on how to handle the holidays once Alzheimer’s comes calling. For me, it can be boiled down to these three words: Have reasonable expectations.

One of the easiest – and most dangerous – traps to fall into is building the holiday up in your mind, and creating a Norman Rockwell-esque image that probably wouldn’t be realistic even in the best of times. Nine times out of ten, doing so is going to result in stinging disappointment. It took me a long time to learn this, but it finally happened in 2010.

We had moved my mom into a beautiful residential memory care home, and I was envisioning the most perfect Thanksgiving. In my mind’s eye, the table was set beautifully, the food was delicious, and everyone was smiling. But I didn’t just imagine it; I was determined to make it happen. Instead, the day went something like this:

* Making Lemonade Out of Lemons… or Margaritas Out of Tequila

Damn if I didn’t conjure up a glorious vision of mom having a great day and even helping me in the kitchen (I think in my vision, we were even wearing spiffy pumps with 2-inch heels and cute little gingham aprons trimmed in lace). Fantasyland. Big. Mistake.

Kitchen activities commenced at home last night, where I baked the pies and made our favorite cranberry sauce and salad. This morning, I did the candied sweet potatoes then loaded the car with all the prepared food plus fixin’s for mashed potatoes, corn, and stuffing. I had pre-ordered a fresh turkey and dropped it off at Eason House earlier in the week.

Reality Sets In

My fantasy began to crumble about seven-eighths of a second after I arrived at the house. When I went inside, it was very apparent that mom was having another “one of those days”. She was stony and silent – despondent. I quickly grabbed one of the pies and cut her a slice thinking I could turn things around.

Alas, she lit up at the sight of the pie and ate every single bite. Unfortunately, when it was gone she fell right back into her funk.

I was there for about seven hours, and aside from a few moments here or there, she was inconsolable. There were a few small stretches where she let me rub or back or head and hold her hand, but the vast majority of the day consisted of her pacing, screaming, sobbing, standing out in the rain, pulling her hair, and hitting. To put it mildly, it was awful.

There is nothing worse than seeing her that way and not being able to do a single thing for her. She doesn’t want to be touched, talked to, or comforted. And she is very good at letting us know it.

I’ve never experienced such a feeling of complete and utter helplessness.

On days like today, I know there are moments of clarity where she realizes things aren’t right and that just frustrates, angers, and scares her more. Based on her facial expressions and behavior, I can’t begin to fathom what’s going on in her mind, but whatever it is, it’s horrendous.

The Show Must Go On

boiling-pan I went ahead and cooked dinner, but all the while, my stomach was churning, my heart was breaking, and my own mind was going in a million directions.

Who is this woman?
What can I do to help?
Get me out of here.
What if I’m doomed to the same fate?
Why didn’t I bring a bottle of wine?
Is this *really* my mother?
Am I in the middle of a bad dream?
Will she let me hug her?
Can I convince her to taste this stuffing?
Should I try to talk to her or back off and give her space?
Why can’t ice cream fix everything??

When it was all said and done, Mom’s caregivers sat down to dinner with Jess and I. I’m not sure I even tasted my food; it all just landed in a heap in the pit of my stomach. Mom wouldn’t come to the table, but after we finished, I did coax her over with another piece of pie.

Next Year: Thanksgiving in Bora Bora?

Slowly, the rest of the ladies arrived home after having dinner with their families. The house was a bit chaotic with a lot of conversation and activity, which just adds to mom’s agitation. Eventually, everyone left and the house was once again quiet.

One of the ladies was hungry, so Susie fixed her a plate and she raved about how delicious the meal was. That, along with a text from Jess (“Thanks for a great meal!”) was the highlight of the day.

Quite honestly, I don’t care if I never cook another turkey in my life… celebrating Thanksgiving on a deserted island sounds like a spectacular plan, in fact.

(*Excerpt from post written November 25, 2010)

Well, as I recall, that night ended with a margarita (or two) and a vow to start a new Thanksgiving tradition which we did the following year.

Right up until the end of her life, I had remind myself to keep my expectations in check, but after that day, it became a little easier. It was all about realizing that the holidays would never be what they once were, but we could still have some incredible moments of joy.

Fight, Flight, or Meltdown?

11 Monday Nov 2013

Posted by Ann Napoletan in Caregivers, Grieving, Life After Caregiving, Mom, Ruminations, Saying Goodbye

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alzheimers, caregiving, dementia, grief

I 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.

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.

For 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.

Alzheimer’s: It’s Not Contagious

20 Sunday Oct 2013

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, fear, Inspiration, Mom, Ruminations, Smiles, Support system

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alzheimers, alzheimers support, caregiving, dementia

I saw a picture a few days ago, and it’s been on my mind ever since. The image was that of an older woman sitting alone on a bench looking off into the distance. The caption said, “Alzheimer’s isn’t contagious.”

As advocates, we place a great deal of emphasis on funding for research – we think a lot about the future – hopefully one without Alzheimer’s. And all of that is tremendously important. However, the image of that lonely woman reminds us we must also focus on those living with the disease today.

Lonely Days

How many dementia patients sit alone in a facility, day after day, month after month, and year after year? One might argue that technically they aren’t alone; there are people around, the hustle and bustle of daily goings on, shower time, mealtime, and an occasional balloon volleyball game.

Don’t fool yourself – they are alone.

This begs the question, why do friends and family head for the hills when they hear the word “Alzheimer’s?” It’s something I see mentioned regularly in various caregiver forums. In addition, more and more courageous individuals who are in the earliest stages of the disease are speaking out; these are folks who still have so much to contribute to the world, yet at the first mention of the “A” word, people begin writing them off.

Here Today, Gone Tomorrow

So why is this post-diagnosis mass exodus so common?

Is it the fear of being asked for help? Is it too difficult for them to see? Do they just not want to be bothered? Or do they think the person is already gone so there’s no sense in visiting?

Not many would admit to most of these, though I have had a few people tell me it was just “too hard” for them to see my mom “that way.”

One can only imagine how egocentric that sounds to a caregiver who faces the tremendously harsh reality of Alzheimer’s every day. I think all caregivers will agree it’s no picnic for us to watch a loved one slowly drift away into the world of Alzheimer’s, but we weren’t given a choice in the matter. However, every moment we spend with them is ultimately a beautiful blessing.

Food for Thought

I want people to understand several critical points, and if reading these words encourages just one person to visit a friend with dementia, I’ll consider that a victory.

Regardless of how far along someone is in the disease, in many ways, they are still same person. Perhaps they have difficulty communicating and can’t do the things they once could, but they are very much alive. My mom’s spirit and spunk, along with many of her other personality traits were apparent until the very end. She was still Marilyn through and through.

You have the power to give one of the most precious gifts in the world – a simple moment of joy – to an Alzheimer’s patient. It doesn’t cost a dime, just the time it takes to sit and talk with them, stop by with a favorite treat, or simply hold their hand for awhile. Sure, they’ll forget the visit, but the way you made them feel will remain. You will have brightened their day and what could possibly be more important than that?

Our situation was pretty typical; very early on, even while my mom was still at home visits became less frequent. Eventually, most everyone had disappeared. But I think those few who did remain stalwart supporters would tell you they reaped rewards beyond measure by spending that precious time with Mom. I would venture a guess that as difficult as it was for them to watch their friend decline at the hand of Alzheimer’s, they felt they received back just as much as they gave. The love, warmth, and yes, the joy, of connecting with an Alzheimer’s patient is a unique and special gift.

Glass Half Full or Half Empty?

One might lament the fact that “she’s a mere shell of the person she used to be,” and there’s no doubt this is one of the most heartbreaking, devastating diseases that exists. But even in the worst of circumstances, there is room for a bit of the “glass half full” mentality.

Remember that even after a person with Alzheimer’s can no longer speak, they need love and affection. They don’t cease to be a human being.

You can’t put a value on a simple smile or a gentle touch. It definitely requires stepping outside of one’s comfort zone and setting aside the deep personal sadness and fear that may exist. However, it’s likely the 30 minutes you spend with an Alzheimer’s patient will be the most meaningful part of your day.