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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Support system

Five Helpful Tips for Caregivers

12 Wednesday Nov 2014

Posted by Ann Napoletan in Caregivers, Facts & Figures, Helpful Resources, November-National ALZ Awareness Month, Support system, Tips

≈ 8 Comments

Tags

alzheimers, alzheimers caregiving, caregivers, caregiving, dementia, national family caregivers month

November is National Family Caregivers Month, an opportunity to focus on the challenges and needs of the more than 60 million Americans caring for family members across our country. As the population ages, so does the demand for caregivers. Consider this:  In 2013, over 15 million caregivers provided an estimated 17.7 billion hours of unpaid care for loved ones living with Alzheimer’s or another form of dementia. Those numbers are astounding, and they’re on the rise.

The natural tendency is to think of a caregiver as someone who cares for a loved one at home on a 24×7 basis; however, the role takes on many forms. Are you working full time and looking after a parent who still lives independently? Are you still raising children while simultaneously handling household tasks for your mother who is in the early stages of dementia? Do you oversee the care your spouse or parent is receiving in an assisted living or skilled nursing facility? These are all examples of the modern day caregiver.

If you or someone you know is a member of this ever growing demographic, I hope you’ll read on as I share five important tips to help caregivers achieve the balance and peace they dream of.

Accept help. Although most caregivers are stressed out, burned out, and worn out, they often have a difficult time asking for and accepting the help they desperately need. While doing some research in 2013, I came across the Lotsa Helping Hands website and it remains at the top of my list of recommendations. This powerful tool is free and provides caregivers with a central location to post tasks with which they could use help. Many times, family members and friends want to help, but just don’t know how – Lotsa Helping Hands solves that problem. Visit the website to find out more about how it works.

Consider some form of respite care. Simply put, you need a break. It doesn’t have to be a week in the Bahamas (although that would be nice), but scheduling an hour or two to go shopping, take a long walk, meet a friend for coffee, or just read a book can do wonders for the psyche in those moments where you feel ready to throw in the towel. To learn more about respite care, visit the ARCH National Respite Network or the Eldercare Locator website.

Find a support network. I can’t stress enough just how important this is. While friends will do their best to understand what you’re going through, nothing can replace connecting with another human being who has walked in your shoes. Contact your local Alzheimer’s Association chapter or Office on Aging for a list of available support groups. If schedules or lack of respite care prevent you from attending in person meetings, there are plenty of wonderful online options including the USAgainstAlzheimer’s, Memory People, and Alzheimer’s & Dementia Caregivers groups on Facebook, the Caregiver Action Network forum, and the Alzheimer’s Association’s ALZConnected online group.

Get organized! Check out technology designed to help caregivers stay organized; one of my favorites is a smartphone app called Carezone. If you aren’t tech-savvy, at a minimum, make sure important documents are in a safe place, preferably filed together in a folder or binder. Better yet, create a binder containing all pertinent information and documents from advance directives to a current medication list, insurance information, list of contacts, and medical history. There’s peace of mind in simply knowing that when you need something quickly, you know just where to find it.

Be gentle with yourself. We are our own worst critics, and caregivers are particularly susceptible to unhealthy self talk. Pay attention to your thoughts for a day and you’ll be surprised at how much time you spend beating yourself up. I recommend the book The Four Agreements, by don Miguel Ruiz, to all caregivers. The simple lessons found in these pages will increase your self awareness and help you manage guilt, stress, and expectations – both self imposed and those of others.

Please leave a comment if you have a tip to share with other caregivers. In the words of Charles Dickens, “No one is useless in this world who lightens the burdens of another.” 

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Get Better: Sign Up For a Free 1-Month Premium Membership

10 Thursday Jul 2014

Posted by Ann Napoletan in Caregivers, Helpful Resources, Support system, Technology, Tips

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caregiving, healthcare app, healthcare concierge service

If you’re a caregiver, you’re likely juggling your caregiving role with managing a household, being a mom, and holding down a full-time job. Now there’s a service that can help manage your family’s healthcare needs, easing the stress in one important area of your life.

While there are an increasing number of smartphone apps designed to simplify scheduling and record keeping for caregivers, Better is unique. Developed in partnership with the Mayo Clinic, Better combines an iPhone app with a concierge service offering 24×7 “live” healthcare assistance to subscribers.

Premium members have access to:

  • A personal care assistant (a live human being!) to help you navigate the healthcare system, locate providers, make appointments, develop a wellness plan, set up mail order prescriptions, and demystify insurance plans and medical bills. The advocate will even lobby on your behalf when issues arise.
  • Expert articles and tips customized to meet your specific needs.
  • Tools allowing secure storage and sharing of health records for the entire family.
  • Mayo Clinic nurses 24x7x365 (via phone).
  • A “symptom checker” to help identify what might be wrong and suggest appropriate next steps.

In the interest of full disclosure, Better is not designed as a dementia-specific tool. However, the service has the potential to simplify healthcare for you and your entire family, thus making your life as a caregiver a bit easier. How many times have you called your physician’s office with a question only to be put on hold, directed to the nurse’s voice mail, or told someone will get back to you in 24-48 hours? Better offers another alternative.

I’m excited to share with you that our friends at Better are now offering a free one-month premium membership to readers of The Long and Winding Road. To claim your membership, simply click here. You can also register from the main page, but please use referral code: bettercarealz

Stop back and leave a comment letting us know about your experience – I’d love to hear your thoughts. Could concierge services become the norm as our population ages and the healthcare system becomes increasingly challenging to navigate?

 

 

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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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The Long and Winding Road

Marilyn, BA (before Alzheimer's)

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