Meet Victoria

09 Tuesday Aug 2016

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, Expectations, Face of Alzheimer's, Video

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alzheimers, caregiving, dementia, younger onset alzheimers

This video is not only a lovely tribute from a daughter to her father, but it carries an important message. No matter how far along someone is in the disease, they deserve our attention, love, and respect.

Too many people still have this false notion that once a loved one no longer recognizes them, there’s no reason to visit. It pains me that this line of thinking still exists. Even in the latest stages, there are moments of clarity, and we just don’t know when they’ll come, but regardless, every person on the planet needs love, affection, and human interaction. Whether they remember you or not, they need you. Please don’t forget this.

Victoria’s father was diagnosed with young onset Alzheimer’s when she was just 19-years-old. Here is her story.

Alzheimer’s & Gratitude: A Matter of Perspective

15 Wednesday Jun 2016

Posted by Ann Napoletan in Advocacy and Awareness, alzheimer's & brain awareness month, Blogging, Caregivers, Expectations, Grieving, Helpful Resources, Inspiration, Life After Caregiving, Marilyn's Legacy, Mom, Ruminations, Smiles

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alzheimer's & brain awareness month, alzheimers, alzheimers gratitude, caregiver grief, caregivers, dementia, gratitude

gllogo June is Alzheimer’s & Brain Awareness Month in the United States, and I’m grateful to my new friends at the worldwide Network for Grateful Living for helping shine the spotlight on Alzheimer’s!

After being introduced to their site, I was inspired to write a piece about Alzheimer’s and gratitude, two things we don’t necessarily see as going hand in hand. We know this disease brings with it pain and sorrow, shattered dreams, and disappointments over lost opportunities. We mourn uniquely beautiful lives cut short, and we struggle to say goodbye to what could (and should) have been. It’s a journey none of us would choose.

However, like anything in life, perspective matters. Some days, I could easily curl up in a blanket and sob for hours about how unfair it is that I began to lose pieces of my mom before I was out of my 30’s. Even as I write these words, I feel tears well up in my eyes.

Yet Alzheimer’s also made me a more compassionate person. It opened my eyes in many ways – to life’s most simple pleasures, to the fact that my story might actually help others, and to the idea that I had talents and abilities that had gone untapped and might be valued in venues I had never considered.

sunset-over-mountains Living through the experience reminded me that my time on earth is limited and there’s no time like the present. It made me sweat the small stuff a bit less. It even made me realize I could leave behind a very comfortable 27-year career with a Fortune 100 company to work for a much smaller non-profit with a strong mission and values I believed in.

Of course, I would trade every last one of those things to have my mom back. Of course I would. But having her back in this life isn’t an option, so I the best way I can honor her is to go on and live the best life I can. The best way I can keep her spirit alive is to do what I now feel is my life’s work, which includes the recent launch of a registered 501(c)(3) non-profit organization, Marilyn’s Legacy: A World Without Alzheimer’s.

I wish I’d grasped the idea of Alzheimer’s and gratitude much earlier in our journey, but I guess that’s what growth is all about. Fortunately, with time, experience, plenty of soul searching – and an ocean of tears – it came while she was still alive. The piece I wrote for Gratefulness.org is all about what a blessing that was. I hope you’ll take few minutes to visit the site to read and share Alzheimer’s Taught Me to be Grateful.

Bookmark the site and check them out on Facebook as well. Be sure to read about Brother David and the fascinating life he led before co-founding the Network for Grateful Living. This has become one of my favorite places for daily inspiration!

Alzheimer’s: Last Minute Tips for Thanksgiving

22 Sunday Nov 2015

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, Expectations, Family, Helpful Resources, Holidays, Tips

≈ 4 Comments

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alzheimers, alzheimers and the holidays, alzheimers caregiving, alzheimers tips, dementia, thanksgiving with alzheimers

With Thanksgiving just a few days away, I wanted to leave you with my thoughts on making the holiday the best it can be for your loved one living with Alzheimer’s or another form of dementia – and for YOU.

Only you know what’s best for your unique situation, so first and foremost listen to your heart. Remember that while things will never be what they once were, it is still possible to find blessings and create moments of joy. If your loved one is still in a place where a gathering is feasible, here are some tips to help.

Set realistic expectations right from the get-go. When planning, consider where your loved one is in the progression of the disease and prepare accordingly.

Let go of the need for everything to be perfect. You are not Martha Stewart and no one expects you to be. If you need help, ask.

If you are hosting, set aside some quiet one-on-one time to spend with your loved one before guests arrive. During this time, shut out all distractions and focus on your time together.

During a larger gathering, keep noise to a minimum. Speak clearly in a calm, soothing tone.

If your loved one is still able to help with simple tasks, by all means, let them! This gives them a sense of purpose and pride.

Minimize distractions, and remember that if you are tense, your loved one will pick up on that feeling.

Create a quiet, comfortable area where one or two people at a time can visit.

Watch for signs of overstimulation in your loved one and recognize it may be time for a quiet break. Soft music may help with relaxation.

Keep some old photographs handy as a conversation starter and for reminiscing. Avoid questions like, “Do you remember?” Instead, talk about the photographs and follow their lead.

Realize that sometimes just sitting and holding their hand or rubbing their back makes for the perfect visit.

Don’t argue or correct. Remember the best visits involve you entering their world, rather then expecting them to come to yours. This is a key to every positive interaction!

Know that the emotions stirred by your visit will last long after the memory of your time together has faded. Let them feel your love.

If you are having visitors who don’t see your loved one on a regular basis, prepare them ahead of time so they know what to expect. You might even consider sharing this list with them in advance of the gathering.

Last but not least, if you have a chance, listen to this recorded call. You’ll hear Susy Favaro, LCSW, from the Banner Alzheimer’s Institute, and myself along with other caregivers and several individuals living with Alzheimer’s. The call is from 2013, but the content is timeless.

I’d love to hear your tips, suggestions, and lessons learned, so feel free to leave a comment below!

Wishing you and yours a blessed holiday….