The Return of Holiday Traditions Filled With Love

12 Thursday Dec 2013

Posted by Ann Napoletan in Caregivers, Grieving, Holidays, Life After Caregiving, Mom, Ruminations, Smiles

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alzheimers, caregiving, christmas with alzheimers, dementia, grief, holiday traditions, holidays with alzheimers

I honestly can’t believe it’s been a year since my mom lost her battle to Alzheimer’s.

Before her passing, I guess I didn’t know much about grief. I thought I did; after all, I’d been grieving for years as I watched her slow agonizing decline. Indeed, that was a form of grief, but not the same as what I’ve been experiencing over the past year.

Last weekend felt like a bit of a turning point. On a cold, blustery winter day, I felt the warmth of Mom’s loving presence as I thought about holidays past.

Over the course of our Alzheimer’s journey, holiday traditions gradually slipped away. Somehow, it was easier to create new rituals than it would have been to try and carry on old ones. Without the woman who had always been at the center of our celebrations, the holidays didn’t feel like the holidays anymore.

Bittersweet Memories

My mom loved to bake, and at our house Christmas meant TONS of cookies. When I was growing up, it was nothing for her to make a dozen or more different kinds, all from recipes handed down over the years. Our kitchen smelled heavenly as batch after batch came out of the oven. For friends, family, and co-workers, the approach of the holidays meant Marilyn’s cookies were just around the corner!

When Alzheimer’s entered the scene, Mom’s baking tapered off, and for a while I continued. However, as she got worse, it just didn’t hold the same appeal. We made pizzelles together for the last time in 2009, and by then, her attention span and focus was such that after a few cookies, she lost interest. My favorite memory of that year was watching her eat them “hot off the press” – I don’t think any of her cookies even made it to the cooling tray!

Years earlier, we had stopped making hardtack candy, another tradition that dated back more than four decades. Each Thanksgiving, the thought crossed my mind – I should make the candy – but, at the end of the day, without Mom, what was the point?

Feeling Her Presence

And now here we are, 2013. The first snow has fallen, the stores are filled with excited shoppers, and Christmas lights are popping up all over the neighborhood. Last year at this time, I was at Mom’s bedside in a hospice facility. Waiting. Thinking. Wondering. Praying.

Last weekend, I made the hardtack candy for the first time ever without her expert hand and watchful eye. It felt like the rekindling of a beloved tradition. As the syrup bubbled on the stove, the intense scent of lemon and spearmint oils filled the kitchen, and a dusting of misdirected powdered sugar covered the floor, I felt pretty certain her expert hand and watchful eye were still with me after all.

This coming Sunday will mark one year since Mom’s death, and my daughter and I have dubbed it “Gram’s cookie day.” We’ll spend the day baking, laughing, and most importantly remembering the good times.

It feels good to bring back these traditions, and I know it’s what she would want…

Following Your Heart

This is such a challenging time of year for Alzheimer’s families regardless of what stage your loved one is in – or if they’re no longer here with you. We simply do the best we can, follow our hearts, and seek out joyful moments.

How are you handling the holidays? Are you carrying on old traditions or do you find that new ones are beginning to evolve.

Whatever you’re planning, remember to be kind to yourself…

Happy Holidays…

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.