Presidential Candidates on Alzheimer’s

30 Thursday Jul 2015

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

Tags

alzheimers, alzheimers caregivers, alzheimers funding, alzheimers research, brenda bouchard, candidates on alzheimers, dementia, hillary clinton, honoring ken, john kasich, rick santorum

New Hampshire resident, Brenda Bouchard, has been caring for her husband, who is living with younger onset Alzheimer’s, for 10 years. She also cares for her 89-year-old mother who has Alzheimer’s and lives with her.

With more on her plate than most of us can begin to imagine, Bouchard has set out to bring Alzheimer’s to the national stage. She recently attended three New Hampshire town hall meetings and posed a critical question to presidential candidates Santorum, Clinton, and Kasich. You can see their responses in the video clips below.

What will you do to make sure this devastating disease gets the attention it deserves?

This courageous, passionate caregiver is just getting started. Brenda explains, “What I am working to do is to put these questions before as many candidates as I can to help keep the national conversation going around Alzheimer’s. It’s non-partisan for me in terms Alzheimer’s.

“I’m singularly focused on getting the candidates to talk about Alzheimer’s so we can change the climate and culture around this disease and hopefully get enough people talking about it so we can demand more funding for research to find a cure!!! I plan to keep truckin’!!!”

Thank you for all you’re doing to shine the national spotlight on Alzheimer’s, Brenda!

We can help Brenda and the movement to #ENDALZ by sharing these videos with others to get the country talking. The squeaky wheel gets the grease and I’ve never met a group of people who are more passionate and committed than Alzheimer’s caregivers and advocates!

Two Alzheimer’s Caregivers: Straight from the Heart

25 Saturday Jul 2015

Posted by Ann Napoletan in Advocacy and Awareness, Blogging, Caregivers, Events, Face of Alzheimer's, Family, Inspiration, Music and Art, Ruminations, Smiles, Support system

≈ 2 Comments

Tags

alzheimers, alzheimers advocate, alzheimers caregivers, alzheimers music, alzheimers music festival, dementia

Image Source: morguefile

I’ve seen a couple of posts this week that have really touched my heart. Allan Vann and Vince Zangaro are on very similar, yet different paths. One of the things they have in common is their willingness to share their stories to raise awareness and bring hope and comfort to other caregivers.

Allan Vann

Allan Vann is a talented blogger who has published hundreds of insightful, informative articles on his blog. He also recently began writing a column for the Huffington Post and was interviewed by CBS news last week.

Allan’s wife, Clare, was formally diagnosed with younger onset Alzheimer’s at age 63, but had been experiencing signs for several years before that. Allan cared his wife at home before making the difficult decision to place her in a care facility. However, he learned that doing so allowed him to be her husband again, rather than her 24×7 caregiver, which was a true gift to both of them.

Image Source: CBS News

The CBS interview captures the pain of slowly losing a loved one to Alzheimer’s with a raw, emotional accuracy.

Although it was my mother rather than spouse that I lost to this horrid disease, so much of what Allan says rings true to me. The arguments were the most difficult – early on, we fought about everything, and that was so uncharacteristic of our relationship. So sad to think about it…

Vince Zangaro

Vince Zangaro was just 29 when his father was diagnosed with Alzheimer’s ten years ago at age 62. He & his wife, Amy, are full-time caregivers and by sharing their journey, they help others to stay afloat.

Vince had a wonderful piece published on The Caregiver’s Voice this past week. One of the things that makes it unique is that Vince wrote it from his father’s perspective.

When I open my eyes in the morning, I feel scared. Where am I? Where have I been? Do I know this place? I look to the right, and the people there are sleeping soundly. I can’t remember who they are, but I know they love me and I love them; I feel safe.

Image Source: Facebook

Read the full piece here.

In some ways, Vince’s posts and his videos make me miss my mom even more, but mostly they remind me of all the happy times we shared even as she fell further into the clutches of Alzheimer’s. His words also illustrate how having a loved one with Alzheimer’s changes our lives, and how that often results in us becoming better human beings.

One of his recent Facebook posts provided a simple, yet invaluable tip, in such a heartwarming way.

“I have learned when giving dad a hug to have it last a minute or longer. After the 60 second mark you will start to see him grasp the moment. It doesn’t always take medicine to help someone you love.”

And then there’s this video that makes me smile and cry at the same time… if it was possible to make a 3-minute video that defines love in its truest form, this is it.

Vince is also founder of the Alzheimer’s Music Fest which you can read more about on Facebook or at the event website. If you’re in the Duluth, GA, area, check it out!

In Alzheimer’s News: Weekly Roundup

17 Friday Jul 2015

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, Early Onset, Face of Alzheimer's, Family, Genetic Testing, Pharma, Round Up, Sandwich Generation

≈ 3 Comments

Tags

alzheimers, alzheimers caregivers, alzheimers drugs, dementia, familial alzheimers, namenda, younger onset

Familial Alzheimer’s at Age 34

Image Source: Montgomery Advertiser

Carrie Richardson – Advocate Extraordinaire Heads to DC. (7/16)

“She’s a 34-year-old single mom of three from Montgomery, who was diagnosed more than two years ago with Early Onset Familial Alzheimer’s, plans to head to Washington, D.C., on Friday to bring awareness to a disease that has taken the life of her grandmother, father, uncles and cousins. All were diagnosed in their 30s.” ~Kym Klass, Montgomery Advertiser

To read the full article, visit –> http://www.montgomeryadvertiser.com/story/news/2015/07/15/mom-alzheimers-treks-dc-bring-awareness/30207805/

Coming to a Pharmacy Near You: Namenda Generic!

Stock Photo http://www.morguefile.com

At last, a generic form of Namenda (aka Memantine) is finally on the market. This means significant cost savings for families who have had no choice but to pay the exorbitant price for the brand name drug! Bob DeMarco of the Alzheimer’s Reading Room shared more in his July 15 post.

“When Aricept (Donepezil) went generic the price immediately fell from $280 for a 30 day supply to $153. Six months later when other generic drug makers were permitted to offer the drug the price fell to less than $10 for a 30 day supply.” ~Bob DeMarco

To read the full post –> http://www.alzheimersreadingroom.com/2015/07/generic-namenda-is-now-available-for.html

Lost and Found in the Land of Dementia

Image Source: http://www.knopps.com

This is an excellent opinion piece from the NY Times (7/11). I can relate to so much of what the author describes. Once we learn to drop expectations, we begin to see through the Alzheimer’s fog, realizing how much of our loved one is still there. Different, yes, but very much still there. Lost ..and then found. A good characterization.

“I stopped concentrating on the content of her words and, instead, went along with every twist. Once she said she wanted to go somewhere for a picnic. ‘Why, Mom?’ I asked. She said: ‘So we can boil the chicken.’ Rather than grilling her about what she meant, I asked what kind of chicken we should boil and where we should hold this picnic.” ~Steve Knopper

To read the full article, visit–> http://www.nytimes.com/2015/07/12/opinion/sunday/my-mother-lost-and-found.html?smid=fb-share

Missing Jim: The Reality of Alzheimer’s

Image Source: http://www.missingjim.com

If you aren’t a follower of Karen Garner’s blog, Missing Jim, I highly recommend it. Jim Garner was diagnosed with younger onset Alzheimer’s in 2011. He wasn’t even 50 years old. Karen had noticed changes when Jim was 45 and she was just 37; at the time, their children were 3 and 6. Difficult to even fathom, isn’t it?

Now as Jim’s declines, Karen juggles the roles of full-time caregiver to her husband and mother of two young kids still at home. Earlier this week on her blog, Karen shared an update on the frightening turn of events that occurred when Jim recently visited his parents in another state.

As I read her last two posts (7/8 and 7/16), I found myself wondering how I would have handled the situation – I fear it would not have been pretty. Reading about their experience is a stark reminder of just how cruel and unpredictable Alzheimer’s can be.

“Jim had difficulty on the way while riding in the car at one point getting aggressive with my parents. Then he had several severe psychotic breaks during his first full day away, culminating with police, an ambulance ride to the ER and now a stay in a locked psychiatric unit. In Connecticut. While I am in Virginia. And he is confused. And scared. And alone. And a lost soul. I can only understand about every 3 words he says on the phone.” ~Karen Garner

To read the full post –> http://missingjim.com/2015/07/08/elusive-answers/#sthash.v3On5nB0.dpbs