Getting Through the Holidays with Alzheimer’s

19 Thursday Nov 2015

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, Caregivers.com, Eason House, Holidays, Life After Caregiving, Mom, Ruminations

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alzheimers, alzheimers and the holidays, alzheimers caregivers, alzheimers grief, dementia

As the holidays approach, stress levels tend to rise and expectations (often unrealistic to begin with) run amok. It can be a recipe for the ultimate disaster if we aren’t careful. Chances are, if you’ve been a caregiver for a while and your loved one is in the advanced stages of the disease, you know all too well what I’m talking about.

But for those who may be less seasoned, I thought it would be a good time to share a bit about how our holidays changed as my mom’s condition deteriorated – and how we coped (and are still coping today).

Check out Holiday Hoopla: Don’t Let It Get You Down. My hope is that this short piece may help you create reasonable expectations and limit your own heartbreaking disappointments.

Holiday Hoopla was written in 2012. Mom had taken a turn for the worse in the late summer/early fall and I believed we had reached the end of the road. I canceled a pre-paid trip to Mexico at the last possible minute in September, but to everyone’s surprise, she began to bounce back a bit.

By the time Thanksgiving rolled around, Jess and I were emotionally and physically worn out. If there was any chance of making it happen, we really needed a couple of days away. Mom seemed to be doing well, stable at least. She wasn’t having the horrible days and nights that we’d experienced in September and October, so her caregivers encouraged us to take our Chicago trip.

Happier holiday times, circa 1990. Mom, age 54

They reassured us she would be just fine, and after much deliberation and a healthy dose of guilt we packed our weekend bags and drove to the Windy City. I knew Mom would be well cared for, and we would be better for having had a few days away. If anything happened, they would call and we could head back immediately.

Although we were on edge Thursday and Friday, receiving no phone calls led us to believe things had at least remained status quo. What a relief! Or so we thought.

We drove back Saturday and arrived to find the wheels had essentially fallen off the bus in those 72 hours. It was a steep decline and one from which Mom wouldn’t rebound… On December 15, 2012, she earned her angel wings.

We still go to Chicago for Thanksgiving – it has become our new tradition. The trip gives us something to look forward to instead of spending three weeks dreading the impending holiday. It’s not the same as the wonderful Thanksgivings we had as a family; however, those times are distant memories. November and December will never be what they once were. But, life must go on…and it does.

However you decide to spend the holidays, I wish you joy and peace – most of all peace. Remember that only you know what’s best for your family and your unique circumstances. Be well, my friends. Happy Thanksgiving to you and yours.

Alzheimer’s & Managing Holiday Expectations

21 Friday Nov 2014

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

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alzheimers, caregiving, dementia, grief, holiday stress, holidays with alzheimers

“Expectations were like fine pottery. The harder you held them, the more likely they were to crack.” ― Brandon Sanderson

Moments of true joy are often fleeting in our hectic, fast-paced 21st century lives. Add Alzheimer’s to the equation and things become more challenging. Even on the best days, caregivers struggle to find balance, contentment, and peace of mind.

As the holidays approach, we feel pressure to create a picture perfect Norman Rockwell backdrop, from the spectacular meals and family gatherings to the gifts, traditions, and festive decor. While some level of planning is obviously necessary during the holiday season, fully embracing reality and recognizing limitations is critical to avoiding disappointment.

Dreaming of Holidays Past

Back in 2010, I decided Thanksgiving would be just like old times if I cooked the traditional meal at Mom’s residential memory care home. That would solve everything; I actually convinced myself that if I tried hard enough, I could create holiday utopia.

You can imagine how that turned out!

As is almost always the case, Alzheimer’s quickly reminded me who was in charge. This is an excerpt from a piece I wrote later that evening:

I cooked dinner, and all the while, my stomach was churning, my heart was breaking, and my 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? This is just a bad dream, right? Will she let me hug her? Should I try to talk to her? Can I convince her to taste this stuffing? Should I back off and give her space? Why can’t ice cream fix everything?

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.

Grand Illusions

I was crushed, but I had broken the cardinal rule of dealing with dementia – I had created a fantasy that would have been impossible to live up to under the most ideal of circumstances. Simply put, I set myself up for major disappointment.

Special occasions provide fertile ground for creating these grand illusions, and that’s why I share this story. Remaining firmly planted in reality doesn’t mean everything has to be gloom and doom. It simply means avoiding overinflated expectations.

Depending on how far along your loved one is in their progression, they may not even realize it’s a holiday. To them, Thanksgiving is just another day. Even just a few extra people in the house can be overwhelming. Routines are put on hold, noise levels increase, and what feels like a festive atmosphere to the average person may translate to full on chaos and commotion for someone living with dementia.

Keeping It Simple

Set aside some quiet time to spend with your loved one on Thanksgiving. Prepare visitors ahead of time, especially if they aren’t accustomed to dealing with dementia and its challenges.

Some other keys tips for making the holiday happy include:

Keep noise to a minimum. Speak clearly in a calm, soothing tone.
Minimize distractions, and remember that if you are tense, your loved one will pick up on that feeling.
Create a quiet area where one or two people at a time can visit.
Watch for signs of overstimulation and recognize it may be time for a break.
Keep some old photographs handy for reminiscing.
Realize that sometimes just sitting and holding their hand or rubbing their back makes for the perfect visit.
Don’t argue or correct them. Remember the best visits involve you entering their world, rather then expecting them to come to yours.
Know that the emotions stirred by your visit will last long after the memory of your time together has faded.

First and foremost, find joy in the simple things and avoid the temptation to create unrealistic expectations during the holiday season. The holidays will undoubtedly be different than they used to be, but they can still be very beautiful.

Wishing you and yours peace, joy, love, and a bounty of blessings this Thanksgiving….

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.