Advocating for aging issues in the midst of political turmoil

Aging is a bipartisan issue. Whether you’re a Republican, Democrat, Independent, a member of another political party or reject all such labels, all of us will experience the consequences of aging, save for those who meet a premature death. Even those who don’t experience old age themselves may have dealt with aging issues when caring for a loved one.

As Washington deals with political upheaval, the lives of seniors hangs in the balance. The work to address senior and caregiving issues must continue, no matter who resides in the White House. I subscribe to the Alzheimer’s Impact Movement newsletter, and their January update provided a list of Congressional members who play an important role in committees that address Alzheimer’s and aging issues.

In addition to your local representatives, reaching out to the Senate Committee on Aging is a good place to begin. The bipartisan leadership includes:

  • Chair: Sen. Susan Collins (R-ME)
  • Ranking Member: Sen. Bob Casey (D-PA)

Their contact information can be found on the committee’s website, along with an online submission form.

According to AIM, just this past week, 12 senators sent President Trump a letter to encourage greater investment in Alzheimer’s research and introduced a resolution to make address Alzheimer’s issues an “urgent national priority.”

So call your representatives, email them, write letters, reach out to them on social media … make your concerns known. I do believe personal stories make a difference, and can help fuel greater legislative effort.

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Learning the language of Alzheimer’s

I’m reposting this excellent piece from Marie Marley on how to effectively communicate with those who have Alzheimer’s. It’s really all about being in the moment with that person, and not worrying about right or wrong, truths or untruths. Learning a new communication style is so important because many people with dementia still crave human interaction.

“Adopt the pace of nature: her secret is patience.” Ralph Waldo Emerson Today we welcome award winning author Marie Marley to The Purple Jacket. Yesterday afternoon I walked into Mary’s spacious room. Mary is a woman who has few visitors and who I’ve volunteered to spend a little time with every week. I greeted her, […]

via 5 Tips for Talking With a Person Who Has Alzheimer’s — The Purple Jacket

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‘Alzheimer’s: Every Minute Counts’ a tender yet sobering documentary

I strongly believe that to reach people about an issue they are unfamiliar with, presenting them with experiences from real folks is the way to go. The new PBS documentary, Alzheimer’s: Every Minute Counts, does just that, highlighting the emotional toll the disease takes on caregivers, while also demonstrating the physical and financial consequences associated with the disease.

The documentary doesn’t sugarcoat the situation. It uses the term, “families in crisis” and how our government and society are largely failing to meet their needs. As those of us who have personally been touched by dementia likely know but the general public may be less aware, Alzheimer’s doesn’t discriminate based upon race. The Duartes in Springfield, Missouri are one of the families highlighted in the documentary. Daisy takes care of her mother, Sonia, who was diagnosed with early-onset familial Alzheimer’s at the age of 57.

Families like the Duartes are fighting back, by participating in clinical trials and telling their story to lawmakers. Daisy spoke to members of Congress, who gave a sympathetic ear and related their own tales of family members with Alzheimer’s. Right now, our government is in turmoil, but we must keep the momentum going in the battle against Alzheimer’s and in our campaign to better support caregivers.

The documentary also highlights Rick in Florida, who is overwhelmed by the high cost of residential Alzheimer’s care, when his mother’s condition prevents her from staying in her home. Rick is also saddled with guilt and remorse, because Phyllis is adamant about staying in her own home. This is a heartbreaking decision that so many families face.

I highly recommend this documentary. While it is tough to watch families struggle with this disease, there are people out there dedicating their lives to finding effective treatment and supporting caregivers. Hopefully this film will inspire others to join the fight.

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Recognizing caregiver depression, isolation

Excellent article that outlines common symptoms of depression that caregivers might experience, and what to do about it. Caregiving can be isolating by its very nature, and loneliness and depression are common, yet many caregivers ignore their own symptoms because they are focused on taking care of others.

Stop Saying I Should Get Over It: Loneliness and Depression in Caregiving

via Loneliness and Depression in Caregiving — The Purple Jacket

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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.

purple-angel-logo

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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