Category Archives: Caregivers

Alzheimer’s, Thanksgiving, and Expectations

21 Wednesday Nov 2018

Posted by in Caregivers, Expectations, Holidays, Mom, Ruminations, Tips

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There’s one Thanksgiving that is forever etched in my mind for all the wrong reasons. Although it occurred eight years ago, in many ways, it feels like yesterday. When I think of the November holiday that I once looked so forward to, the first image that comes to mind is from 2010.

As I thought about writing this post and what tips I might offer to help you make the most of your holiday, I found myself overwhelmed. It took several days of contemplation for me to come to the realization that it really all boils down to one simple – yet extremely difficult – concept.

Expectations.

Weeks before that fateful Thanksgiving in 2010, I had unwittingly crafted an idyllic vision of how it would go. This wasn’t deliberate, but my subconscious went to work on how the day would unfold, what the preparation would look like, how the meal would come together, and most importantly, how my mom would be that day – her mood, frame of mind, level of agitation, ability and desire to participate, and all the other things that go along with Alzheimer’s.

Of course, at some point, my subconscious went off the rails – thus the dreaded idyllic vision. I’m sure memories of beautiful holidays complete with cherished traditions, found their way into the mix. Without even realizing it, I had set myself up for disappointment, profound sadness, anger, grief, and a dozen other emotions. Naturally, there was no way this Thanksgiving could be compared to or measured against those blissful memories.

In this particular case, our reality bore no resemblance to idyllic. Mom was having a bad day.  A very bad day.

That evening, I, along with Mom’s two caregivers and my daughter sat down to Thanksgiving dinner. By then, the food was cold, and my stomach was in a million knots. My dear mother was pacing and screaming as she had been all day. She was utterly inconsolable. Severe aphasia had long ago robbed her of the ability to communicate verbally, leaving her unable to express what was bothering her – or anything else, for that matter.

To Mom, that Thursday was just another day. It wasn’t her fault; it wasn’t anyone’s fault. It was this damn disease, all part of the unexpected hand we’d been dealt. Simply put, the picture-perfect holiday I had envisioned dissolved into a pool of tears and when it was over, I swore off all future Thanksgivings.

I could close by listing my top 10 tips for a successful holiday celebration, but instead, I’ll gently remind you to be careful of your expectations. Keep them reasonable. Check yourself along the way and make sure your subconscious isn’t taking over and creating an expectation that the day can’t possibly meet.

Rather than working to create a holiday just like those of years gone by, focus on the current reality. Remember that too many people, a lot of noise and commotion, and sudden changes to routines can really throw your loved one for a loop. Plan accordingly. Spending quality time together and making cherished memories – when it’s all said and done, those things are much more important than setting an impeccable table or serving a perfectly plump juicy bird at 4pm sharp. Flexibility is your friend and goes hand in hand with maintaining reasonable expectations.

It sounds cliché, but the past is in the past, and today is all we have. Try to go with the flow, relax, and create moments of joy wherever you can. Treasure the simple things – an unexpected smile, warm hug, or the expression on his face when he tastes a favorite dish that just might trigger a moment of clarity.

Here’s wishing you a blessed Thanksgiving with the people who mean the most to you. And, don’t forget to be gentle with yourself…

 

The Longest Day: 8 Ways to Get Involved

21 Thursday Jun 2018

Posted by in Advocacy and Awareness, Brain Health Registry, Call to Action, Caregivers, Fundraising, Galaxy A List, Help Stamp Out Alzheimer's, Helpful Resources, Life After Caregiving, Marilyn's Legacy, Mom, Registries, Research, USAgainstAlzheimer's, Washington

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June 21st is more than just the summer solstice. It’s The Longest Day – a time for our thoughts to be with those living with Alzheimer’s and other forms of dementia and their care partners.

It’s a day to spend doing something you love or something to honor a special person living with – or lost to – dementia… a day to raise awareness about AD, how it affects families both emotionally and financially, its staggering impact on our economy and healthcare system, the desperate need for research, education, improved care, and support for family caregivers.

We can’t afford to turn away from the problem, nor can we afford to remain on the current trajectory. If you haven’t yet been personally impacted, odds are you will be. If you have been, you know it’s a life-altering journey.

Get Involved

Learn More. At Marilyn’s Legacy, we proudly support the outstanding work being done by UsAgainstAlzheimer’s. Visit their website to learn more about AD, its colossal impact to our nation both socially and economically, exciting and promising research, and more. Join one of UsA2’s networks, check out their activist toolkit, and join the monthly Alzheimer’s Talks calls to speak directly with leading researchers and other subject matter experts.

Join the A-LIST.  The A-LIST is a first-of-its kind online community of people with or at risk for Alzheimer’s disease, other forms of dementia, or Mild Cognitive Impairment, along with current and former care partners, and the worried well who are concerned about AD. I’m proud to be one of the earliest members of this group that provides members the opportunity to change the face of research by sharing caregiver and patient experiences and preferences. For me, it’s one very easy way to give purpose to our story, or as Meryl Comer often says, “flip the pain.”

Share our Resource List.   Do you know someone touched by Alzheimer’s or another form of dementia that is feeling lost and alone? Share our free Resource List with them, and check back often for updates.

Join a Registry. Another free, easy way to get involved is by joining a registry. Research comes in many forms; some studies simply require online surveys or brain tests that can be taken from the comfort of your living room. Check out the Alzheimer’s Prevention Registry, Brain Health Registry, GeneMatch, and TrialMatch.

Buy Alzheimer’s Stamps. Did you know there is an Alzheimer’s semipostal (fundraising) stamp? The stamp was released in November 2017 and has already raised over $400,000 for research, not to mention the attention/awareness the stamp generates each time it is seen on an envelope! Since its first issuance in 1998, another familiar semipostal – the breast cancer stamp – has raised over $86 million. A sheet of 20 Alzheimer’s stamps costs $13. Visit your local post office or the USPS website to purchase!

Contact Your Representatives. Your voice matters! Call or write your senators and representatives, and ask them to support additional funding for Alzheimer’s. If you have a personal story, share it.  Also ask them to co-sponsor the CHANGE Act, which promotes timely detection and diagnosis, encourages innovative approaches to supporting family care partners, and removes regulatory barriers to disease-modifying treatments. Here is a link to allow you to do this as quickly as you can enter your email address, name, and zip code.

Make a donation. Marilyn’s Legacy: A World Without Alzheimer’s is a 501(c)(3) non-profit organization inspired by my late mother, Marilyn Napoletan. Our mission is to increase Alzheimer’s awareness among the masses as well as raise funds to stop this insidious disease and provide support to enhance quality of life for families currently on this journey. We support organizations that are recognized leaders in this space and have shown superior financial stewardship in regard to use of charitable contributions.

Share This Post on Social Media. In the words of Margaret Mead, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” Little did Ms. Mead know then that in 2018, her words might be more important than ever before.

Goodbye 2017: Onward and Upward

01 Monday Jan 2018

Posted by in Caregivers, Grieving, Guilt and Regrets, Life After Caregiving, Ruminations, Saying Goodbye

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Years ago, when pondering names for this blog, I chose the tagline “An Alzheimer’s Journey and Beyond.” The tagline stems from the life-altering nature of the Alzheimer’s experience and the fact that a new kind of life exploration continues long after Alzheimer’s ends. This post falls into the “and beyond” category.

As I sit ruminating on 2017, I would have to say I’m happy to put it in the past and begin anew. I can’t find the words to describe the past year in simple, straightforward prose and I suppose that’s appropriate as it wasn’t a simple year in terms of emotional turmoil.

February was the beginning of a steep decline in my dad’s health. He had suffered from heart problems for 25+ years, but what we were seeing was notably different. His CHF was becoming increasingly problematic and between February and June, he was hospitalized at least four times.

Dad’s determination to remain independent until the end made long-distance caregiving exceedingly difficult. Aside from twice-to-thrice weekly visiting nurses ordered by his long-time cardiologist and daily Meals on Wheels (which he loathed and barely ate), he refused any sort of help. And the fact was, he needed assistance.

I made the 7-hr round-trip drive 2-3 weekends per month, but it wasn’t enough to manage all that needed to be done.  I loved my dad dearly, but he wasn’t easy to handle – he was depressed, angry, stubborn as a mule, and no doubt frightened as well; all of that combined could bring out a mean streak that was unpleasant at best. He often lost sight of the fact that I was simply trying to help.

June 2016

In my heart of hearts, I think he knew the time was coming when he would need full-time care, and rather than face the prospect of leaving the house he loved, he gave up. He suffered a neurologic event of some sort at the end of May and never came out of that. By the time we arrived, I barely recognized him. Thankfully, he was able to hear and understand us that day, responding with a blink, squeeze of a hand, gesture, or a few hard to understand words, but he never opened his eyes.

After consulting with the most wonderful palliative care doc, we agreed to call in hospice. Dad was transferred to a beautiful hospice facility, where we sat at his side for nine days. He passed away peacefully on June 3. He would have been 84 on June 12. I still find it hard to believe that he’s gone, and it’s such an odd feeling to realize you have no living parents.

Between June and November, there was estate paperwork, cleaning out the house I’d grown up in, hiring contractors, and ultimately selling the property. We closed in early November and I brought home the last boxes of Dad’s belongings the week before Thanksgiving. Over a month later, the boxes are still sitting in my living room untouched.

I’m still working through grief and regrets. Those days in hospice with Dad also brought back vivid memories of my mom’s final days. If I learned anything from my her passing, it was that grieving is complicated. It takes time, it can’t be forced, and it sneaks up on you when you least expect it.

So, all of that, combined with residual grief from some things that occurred in 2016, a demanding, high-stress year at work, and the general state of the world, has left me feeling adrift. I seem to have lost my passion and I miss it, but I’m not sure how to get it back. I’m hoping time is the answer. My life is rich with blessings and I know that this, too, shall pass.

Grief is in two parts. The first is loss. The second is the remaking of life. ~Anne Roiphe

The thought of a new year brings hope. This will be the first year, since age 19, that I haven’t been a caregiver in some capacity. Now, at 52, with a family history of both Alzheimer’s and heart disease, it’s time to develop some healthy habits. I want to focus on improved diet, yoga, and meditation, along with making a sincere effort to reduce work-related stress. In short, during 2018, I hope to find a place of balance along with the passion that has slipped away over the past 12 months.

May the coming year bring you a bounty of blessings, and may it bring researchers that much closer to finding the key to unlock the mystery of Alzheimer’s. I’m grateful for you and I thank you for continuing to follow The Long and Winding Road.

With gratitude,
Ann