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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: The Early Years

teleCalm Helps Put Alzheimer’s Caregivers in Control

30 Sunday Oct 2016

Posted by Ann Napoletan in Caregivers, Helpful Resources, Mom, Products, Safety, Scam, Technology, The Early Years, Tips

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alzheimers, alzheimers and dementia safety, alzheimers products, dementia, preventing scams, technology for alzheimers caregivers

scamIf you’re caring for someone with Alzheimer’s or another form of dementia, you know the phone can be a real source of consternation. Something as benign as a telephone can not only cause frustration, but also some rather challenging – and expensive – predicaments.

While still living alone and in the early stages of cognitive decline, my mom wrote checks to every single organization that called asking for a donation. It didn’t matter whether she had heard of the charity or not; if they asked for money, she gave. Ultimately, she fell victim to a scam that resulted in thousands of dollars in “donations” to a bogus food pantry/homeless shelter. Unbeknownst to me, it all began with a phone call from a woman who was preying on the elderly.

Solving a Problem

I recently had an opportunity to speak with Tavis Schriefer, Co-Founder and President of teleCalm. His company has introduced a service to help caregivers create a safety net for the person they’re caring for. The idea was born of Schriefer’s own experience caring for his mother when she was in the early stages of dementia.

To help understand the problem they were trying to solve, founders of teleCalm interviewed hundreds of caregivers during the design process. After all, who knows these challenges better than those on the front lines?  The feedback led to a comprehensive, flexible, and easy-to-use service offered at an affordable price point.

teleCalm puts caregivers in control by allowing them to monitor and filter calls. The system considers every caller a “stranger” until they are added as a contact. Rules are then set up to determine how to handle calls. Not only can loved ones be protected from incoming telemarketer or scam calls, but outbound calls to infomercial ads and shopping networks are easily prevented.

Incoming calls from “strangers” can be directed straight to voice mail. Call history and voice mail messages are then accessible to the caregiver through the teleCalm app (available for iPhone and Android). The caregiver can also receive a text message each time a new voice mail comes in.

List of Features

boxToday, teleCalm offers the following capabilities:

  • Block undesired inbound or outbound calls.
  • See who loved one is speaking with in real time via the live dashboard.
  • Set up rules and messages for “quiet hours.”
  • Review call history.
  • Retrieve voicemails from your own (caregiver) cell phone.
  • Set alerts and reminders.

Developers are currently working on a feature that will notify the caregiver via text message if a call was placed to or received from a specific contact. For example, the caregiver might want to be alerted immediately if a call is placed to the doctor or a particular family member. Schriefer told me he expects the company to continue rolling out additional functionality as it becomes available.

The Technology and Cost

phoneThe technology behind the service is a common one referred to as voice over IP (VoIP), and requires only an internet connection and small VoIP box (provided by teleCalm). The unit is about the size of a hockey puck, and set up is as simple as plugging in the power, ethernet cable, and phone.

teleCalm can be used with your loved one’s existing phone and they can keep their existing phone number. Service includes unlimited minutes, free long distance, and free international calling.

At the time of our interview, teleCalm was priced at $49.99/month with an initial $50 activation fee. Keep in mind that in many cases, this can replace existing phone service.

Does this sound like something that could protect your loved one and bring you some peace of mind? I can’t help but think it would have been useful for us when my mom was living independently. I would be curious to hear your thoughts. Feel free to leave a comment if you have an opinion you’d like to share! 

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Dementia Mentors Site Launches June 1st!

24 Saturday May 2014

Posted by Ann Napoletan in Activities for Your Loved One, Advocacy and Awareness, Caregivers, Early Onset, Events, Helpful Resources, Inspiration, Support system, Technology, The Early Years

≈ 8 Comments

Tags

alzheimers, dementia, dementia activities, dementia awareness, dementia mentors

Where there’s hope, there’s life. –Norman McNamara

Many of us have had a mentor at one time or another during our lives. They guide us, offer words of wisdom, and provide feedback on our ideas or problems. A teacher may serve as a student’s mentor, or someone in a more senior position at work may mentor a less experienced associate. The role might be formal or informal. There are no set rules, but generally the relationship involves trust, counsel, and mutual respect.

No Longer Alone

Imagine receiving a diagnosis of Alzheimer’s or another form of dementia. Few things would be as frightening; few things would elicit such a strong sense of being alone. But what if, upon diagnosis, you were introduced to a dementia mentor? How might that change things?

Well, Gary LeBlanc, along with Norman McNamara (UK), Harry Urban (US), Barry Pankhurst (Indonesia), Chris Roberts (Wales), Richard Taylor (US), and others are preparing to launch a project that has been almost six months in the making. This collaboration between friends and advocates around the world is groundbreaking. Nothing like it has ever been done, but it promises to change the way people deal with the diagnosis and the fear, uncertainty, and loneliness that comes with it.

On June 1st, the Dementia Mentors website will be unveiled. The site was designed and built by Harry Urban, founder of Forget-Me-Not. Harry is living with dementia so he knew exactly what was needed to make the site dementia friendly. The goal is simple: to provide newly diagnosed individuals with the tools they need to start this journey on the right track, from the moment the diagnosis is received.

Those Dreaded Words – And Then What?

Those involved in this project know firsthand how frightening it is to hear the words, “You have dementia.” Imagine hearing those words, then being handed a prescription and told to “come back in six months.” In many cases, that’s exactly what happens. Chris Roberts of Wales describes being stunned and in shock, head spinning such that he didn’t know where to turn.

My personal experience with Mom was similar. Although I absolutely loved the family physician we were seeing at the time, we essentially left the office after each visit knowing things had gotten a little worse but with no resources to help us understand what was happening or connect us with those who could. That was a while ago, and fortunately, I think things have begun to change a bit; at least people are talking about it more now. But, that being said, we have a long way to go.

Renewed Hope

Dementia Mentors is about helping newly diagnosed patients understand their lives aren’t over. In fact, quite the contrary! When one looks at everything people like Norrms McNamara and Harry Urban have accomplished since their diagnosis, it’s nothing short of incredible. These men are true pioneers and are inspiring hope around the globe.

Chris Roberts says, “It’s about what you can do, not what you can’t,” and that’s the message the founders of Dementia Mentors want to convey.

the journey beginsHarry is quick to encourage people not to give up, assuring them they do have a meaningful life ahead of them. In this digital world where Google has become our best friend, it’s vital for folks to realize that when they hit the Internet for information, they will likely be bombarded with material about the later stages of the disease. The disease isn’t JUST the later stages! Yet, there tends to be very little information out there about the earlier stages. This is where Dementia Mentors comes in.

  • Imagine a website created by dementia patients, for dementia patients. That means simple navigation, pleasing to the eyes, clear, and concise presentation. Someone having problems reading the text can simply click a button to hear the passage read aloud.
  • Imagine being able to listen to people who are actually living with dementia discuss a wide variety of topics – all from their own unique point of view and based on real life experience. At launch, the site will have approximately 30 pre-recorded videos, no more than three minutes in length. Additional videos will be added in the coming months.
  • Imagine having a face-to-face video chat with someone who has walked/is walking in your shoes. Patients will be able to schedule an appointment to talk one-on-one with a mentor. Keeping to the dementia friendly theme, a simple mouse click is all it will take to be connected with a mentor via both audio and video. Of course, all discussions will be completely confidential.
  • Imagine one-stop access to over 70 puzzles and activities, all designed with dementia patients in mind. The activity page will be updated with new material regularly to keep it fresh and interesting.
  • Imagine quick, easy access to virtual memory cafés where patients can enjoy socializing with one another. People like Harry, Chris, and Norrms credit keeping busy, maintaining social connections, and staying engaged with helping them keep progression at bay. The beauty of social media – no one ever needs to feel alone.

The Vision

Gary and his team envision today’s mentees becoming tomorrow’s mentors. The value of helping others can’t be overstated. We all feel more energized, hopeful, and positive when we know we’ve made a difference to another person. That’s what Dementia Mentors is all about – people helping people. Everyone involved benefits from the program; each life is enriched along the way.

This project is innovative and 100% grassroots-based. All participants are donating their time and the team is seeking additional mentors. They would like to have every corner of the world covered, so that people can be connected 24 hours per day, seven days per week. According to Gary, there are 15 mentors on board as of this writing, with many others expressing interest already.

Friends Helping Friends

friends helping friendsThe Dementia Mentors tagline says it best, “Mentoring, Motivation, and More. We Help You Rule Your Dementia.” I truly believe that is the key – rule it, don’t let it rule you. We didn’t do that with my mom. At that time, we didn’t even talk about it let alone think there might be a way to connect her with others who could understand her fears so much more than we could. What a blessing that would have been…

You can help by spreading the word about the June 1st launch and directing people to http://www.dementiamentors.org. By doing so, you, too, will truly be making a difference! If you or someone you know would like more information about the project, please send a message via the “Contact Me” link at the top of the page and I’ll put you in touch with Gary!

____

Gary LeBlanc is an author, columnist with the Tampa Tribune, founder of the Alzheimer’s/Dementia Hospital Wristband Project, a Purple Angel Ambassador, and former caregiver to his father who lived with dementia. You can visit him at Common Sense Caregiving.

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And So It Begins… Mother’s Day

28 Monday Apr 2014

Posted by Ann Napoletan in Grieving, Life After Caregiving, Mom, Mother's Day, Ruminations, The Early Years

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caregiver grief

April showers bring May flowers, and May flowers bring… Mother’s Day.

Did stores always have so many Mother’s Day displays or am I just noticing it now because my own mother isn’t here? I feel as though every time I turn my head, I’m faced with a sea of pink and lavender. Cards embellished with pretty flowers and sweet sentiments; signs luring shoppers with promises of “the perfect Mother’s Day gift” or the best way to “show Mom how much you love her!”

More than once over the past week, I’ve come upon a display of Mother’s Day cards, and unconsciously thought, “Oh, I need to get Mom a card.” It only lasts for a fraction of a second before I realize I don’t have a reason to buy a card, and it’s followed by the same empty feeling each time.

Mother’s Day 2011

Earlier tonight, I was reading something I wrote on Mother’s Day 2010:

I think mom really read and understood her card – I made sure to get one with a sweet, yet very simple, message. When she finished she looked at me and said, “Awwwww, that’s so nice.” It was, as they say, “a moment of joy.”

Boy, what I wouldn’t give to relive that moment again…

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Between 2009 and 2015, Marilyn’s Mighty Memory Makers have raised over $22,000 in the fight to #ENDALZ! To all who have supported us, THANK YOU!!

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