Raising dementia awareness, one citizen at a time

To mark MLK Day, I thought it would be appropriate to highlight a gentleman who is truly an inspiration when it comes to raising dementia awareness. His success proves that all of us can make a positive change in our world, if we simply try.

Norman McNamara is a UK resident who was diagnosed with dementia at the age of 50. (Initially misdiagnosed with Alzheimer’s, it was later discovered he has Lewy body dementia.) After being treated rudely by a shopkeeper, he was inspired to raise awareness of dementia in hopes of improving the daily lives of those with dementia in his community. With the help of his wife and community members, the Purple Angel project now has ambassadors and supporters worldwide.

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Purple Angel logo, designed by Norman McNamara and caregiver Jane Moore.

If you spend time in the world of dementia online, you have likely seen the Purple Angel logo. You may have seen it in the windows of businesses.What the emblem signifies is that the business owner and staff have read informational material: the “Guide to Understanding Dementia” by McNamara and “What is Dementia” by the Alzheimer’s Society. By raising awareness of dementia and the challenges those with dementia face, business owners can offer more appropriate and compassionate service, helping create a dementia-friendly community.

A short film about McNamara and the Purple Angel project, Norrms, has been released and McNamara has written multiple books on his experiences with dementia.

It’s inspiring to see how one man’s desire to improve his community has sparked a worldwide campaign, raising dementia awareness one neighborhood at a time. The success of grassroots campaigns like this inspire me to continue my work on Respite Care Share. No one person can solve the challenges of dementia and caregiving alone, but each step concerned citizens take can make a big difference.

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Should we reconsider our bucket lists?

Setting new resolutions and goals is a big part of a new year for many people. I’ve never had an official bucket list, but after watching my parents move on from this world, I couldn’t help but wonder if they had any unfulfilled wishes. That in turn, made me think about my own “bucket list.”

But an article I read recently in Aging Today has me rethinking the whole bucket list concept. I discuss this in a post I wrote for The Caregiver Space. The gist of the article is that we may be better off aging with purpose and participating in activities that offer deep engagement versus waiting until we are retired for that dream vacation or grand adventure. The doctor who wrote the article doesn’t think bucket lists are necessarily bad, but encourages a broader perspective so that we can live more fully in the here and now.

I like this approach. While I hope to enjoy a grand tour of Europe some day in the not-so-distant future, I also want to find joy and meaning in the present. Learning and trying new things, writing more and hopefully getting published more, and helping other caregivers, those are more immediate goals that offer true fulfillment.

What do you think? Are you a fan of bucket lists?

 

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A new year, sparked by old memories

nye

Many people use the new year to try and wipe the old slate clean, and create a new version of themselves that’s thinner or stronger or smarter. There’s nothing wrong with working out more, eating more broccoli and fewer doughnuts and resisting  vices. But what I’ve found in my 40-plus years is that the goals are less important than the journey we take each year on our life’s path.

Caregivers, former and present, understand that life can turn south at a moment’s notice, no matter what the calendar reads, and temporarily disrupt goals, dreams and projects. A “new normal” emerges, and it may not look like what one hoped for at the beginning of a new year. After my father died at the end of 2011, I thought there was a new beginning for my mom and myself, one in which every moment wasn’t spent worrying about my father’s well-being. But just six months later, Mom fell ill and wow, was I ever in for a change. I have no idea what my 2012 resolutions were, but they sure didn’t involve being a caregiver!

So I don’t make resolutions anymore, but I do have goals, which I’m all too aware are subject to change. I’m nearing the completion of my collection of caregiving essays, and I will be working on a prototype for my Respite Care Share concept, which will be presented at the Aging in America Conference in March. These things will keep me occupied for the year, and I’m sure other opportunities will come along the way. New opportunities, but tied to memories of my parents, their lives, the illnesses they battled, and their deaths. While the sharp turn in my life path in 2012 made no sense to me at the time, it got me to this place, where in 2017, I can hopefully give back a bit to the caregiving community.

There is much trepidation about 2017, even though for many, there is a great relief 2016 is coming to a close. Caregivers are survivors, a hardy bunch who push through and find a way to make it another day. Maybe 2017 is the year others will learn the value of caregivers in our society.

I wish you and your family a happy and healthy new year.

 

 

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Merry Christmas memories

I hope everyone has a peaceful, love-filled holiday. Make those moments count with those who mean the most to you.

small-xmas-tree

For those of us dealing with loss, the holiday season is bittersweet. This year, I bought a tabletop tree, and decorated it with Christmas ornaments from my childhood. My family always had a tabletop tree, because we lived in an apartment that didn’t have room for a big tree.

It didn’t matter to me that the tree was small and fake, I loved the magic of Christmas as a child. My parents worked hard to make the holidays special for me, and I am grateful I have those happy memories.

Happy holidays to all. Stay warm and safe, and enjoy the precious moments with loved ones.

 

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Marking five years since Dad’s death

It’s hard for me to believe that five years have passed since my father’s death. So much has happened in those five years that I feel almost like a different person, or that I experienced December 20, 2011 in a different lifetime.

Little did I know at the moment I learned of my father’s death, in the newsroom of the Atlanta Journal-Constitution, on a cold and rainy Tuesday, that six months later, I would become caregiver for my mother. Even at that moment, the colon cancer was likely growing inside of her, waiting to make its ugly appearance in our lives. I thought I would spend 2012 grieving for my father, but instead, I had to shelve my grief in order to care for my mother.

I never expected to be virtually unemployed for well over a year after my mother fell ill. It was my father’s death that allowed me to pursue new career opportunities, as I had not wanted to take a new job when I knew he may pass at any moment. It turned out to be a bad move, and when Mom required emergency surgery, I was forced to quit after just two months, to go tend to her in New Mexico.

If I had guessed what my life would be like five years from that dreaded day in December 2011, I would not have imagined my mother being dead for a year and a half. She was 74 at the time of my father’s death, and appeared to be in good physical shape. I was most concerned about her loneliness and depression after Dad’s death.

Sometimes it all seems like a bad dream, but of course, I know all too well that it was real life. Good things have happened over these five years: my writing won an award, I secured full-time employment again, I’m slowly but surely crawling my way out of debt. I’m using my experiences, both positive and negative, in the caregiver advocacy role that I now cherish. The past five years have been turned into essays that have touched people and generated conversation around the topic of caregiving.

I certainly would never want to live the past five years of my life over again, but I am a better person for surviving them, and for taking the lessons my parents taught me to help others in a similar situation.

 

 

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A visit to Amy’s Place

I finally had the pleasure of visiting Amy’s Place, a memory care cafe in metro Atlanta. Amy’s Place was selected by Atlanta magazine as a 2016 Groundbreakers finalist. This year the theme was how to make Atlanta a better place to grow old.

Amy’s Place certainly fulfills that mission. The charming home is open free of charge to people with dementia and their caregivers. It is designed as a place to visit and relax. Two adorable dachshunds bring wail-tagging joy to visitors, and caregivers can utilize a fully-stocked kitchen and shower while their loved ones receive attention and supervision from staff. Amy’s Place also offers caregiver support groups and fun social events, like painting classes.

I had a chance to meet co-founder Pam Van Ahn at the holiday party held at Amy’s Place last week. She and her sister Jean opened Amy’s Place earlier this year and are receiving rave reviews from the caregiving community. The memory cafe is part of their nonprofit, Caring Together in Hope.

The more I learn of programs like this, the more hope I have that we as regular citizens can make a difference in the lives of those with dementia and just as importantly, their caregivers. If you know of programs in your area that are designed to help caregivers, let me know in the comments section. I’m working on putting together a list of resources for my own Respite Care Share project.

 

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Bringing the gift of technology to seniors and caregivers

The holiday season can be overwhelming for family caregivers. I was grateful to take advantage of the technology that was available when my parents were alive to make the caregiving job easier. Health technology is a rapidly growing field, and now there are numerous apps, aids and devices to help seniors safely age at home. I’m going to name a few products that I either have used or am familiar with, in case you are buying a gift for a caregiver or senior living at home alone this holiday season. (These are not endorsements, just feedback from a real user and former caregiver.)

jitterbug-phone

Senior-friendly phone: My mom loved her Jitterbug phone, which is made by Great Call. Mom was not tech-savvy at all, and she was a bit skeptical about even using a cell phone at first, but she quickly learned how convenient it was. By far, the phone was the best gift I ever bought for her.

Medical alert services: I purchased a Philips Lifeline device for my mother, because that’s the brand the local home health agency used at the time. The service was quite useful and I felt that it was worth the monthly monitoring fee. My mom had a few falls over the last year or so of her life and each one was immediately recognized by the sensor that she wore as a necklace.  A representative checked on her over the intercom to see if she needed additional assistance. One time she did, and EMTs arrived to check her over.

The one downside was that the pendant that Mom wore was very sensitive and could easily be accidentally activated. That part annoyed Mom, but I guess it’s better to be too sensitive than to not work when you need it.

Another kind of medical alert service is a wandering detector for those with dementia. I bought one for my father that was part of the Alzheimer Association’s Safe Return program, but we never had the opportunity to use it before Dad entered the Memory Care unit. As GPS and other location tools become more refined, I think these kinds of tools can be very helpful. Instead of a bulky device, something as small and easy to apply as a tag on clothing could help monitor those with dementia. When I was setting up Dad’s unit, I did notice that because of my parents’ rural location, the GPS signal was weak.

Blood pressure monitors: Neither of my parents had blood pressure issues, but at-home blood pressure monitors are readily available on Amazon for a reasonable price. While these devices should never replace an actual doctor or home health visit, they might be useful for seniors who like to take a proactive approach to their health or their caregivers who wish to monitor a loved one’s blood pressure in-between professional check-ups.

Smart home speaker (Amazon Echo, Google Home, etc.): I think my mother would have loved the interactive features of the Amazon Echo. I bought one out of curiosity, and bought another device so I can use it to control the living room lights. I also use it to play music as it has a decent speaker. Other than that, I don’t use it that much, but I could see my mom using it almost as a remote companion, asking it questions, getting it to tell jokes, telling her the weather, etc.

Another excellent use of these smart home speakers is for medication reminders. I would have loved to have used it to remind Mom to drink water on a more regular basis, which may have helped with her chronic constipation. The best thing about these devices is they are so easy to use once they are set up. Basically the user just needs to say the trigger name or phrase and then ask a question or command. The devices do require Wi-Fi, and initial setup can be a bit of a pain.

Tablets: I was never sucked in by the attraction of tablets, because I’m a computer power user who would rather just use my laptop for bigger screen tasks, and am fine using my smartphone for small screen tasks. The tablet was a solution searching for a problem to me. However, the mobility and ease of use of tablets could be ideal for seniors.

Tablets make tasks like emails, instant messaging and video messaging, viewing photos and videos super-simple. Playing word games can help keep older minds active and being able to connect with others remotely could reduce loneliness.

Find a professional caregiver online: One of the best gifts you could offer a caregiver is a break. I’ve used Care.com before, and liked how you could search online for caregivers in your area. Payment could be made online, which I found convenient.

 

 

 

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