Category Archives: Awareness & Activism

Dementia: a new beginning —

I admire Kate Swaffer for sharing her experience with early-onset dementia with the world. If you haven’t been following her, I highly recommend doing so. She offers great insight and tips for how those with dementia can be better accommodated so they can continue living their lives to their fullest potential.

via Kate’s blog:

Thanks to SBS for posting my article, written specifically for their website recently. Read: ‘I was diagnosed with dementia at 49. It turned out to be a new beginning

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National Family Caregivers Month: Honor, take action

November is National Family Caregivers Month. This year’s theme announced by the Caregiver Action Network is “Caregiving in Crisis.” It’s an appropriate theme as the coronavirus pandemic has propelled family caregiving into the national spotlight. In 2020, many Americans found themselves as caregivers for the very first time.

This year’s election was dominated by the coronavirus pandemic. The new administration will have its hands full in trying to bring the pandemic under control, while initiating economic reforms to stabilize the economy. Once again, caregivers play a critical role in both areas.

Here are a few high priorities on my caregiver wish list:

  • Increased financial support for family caregivers: With unemployment rates still high due to the pandemic, it is critical that we offer ample funds and other benefits to those family caregivers who are at financial risk. You cannot care for others if you can’t care for yourself first.
  • More affordable health care options: The ACA was a start, but has significant gaps. The haphazard federal response so far to the pandemic has left some people with pricey medical bills. Hospitals are closing in rural areas when medical care is needed the most. If we’ve learned nothing else from 2020, it is that affordable and accessible health care is a critical need.
  • Increased pay, benefits for professional caregivers: Family members cannot do it all on their own. But the caregiver workforce in America is woefully underpaid. We must improve the pay, benefits and educational opportunities for caregivers so we can attract the best people to these jobs which the pandemic has illustrated are of immense importance.
  • Build a modern eldercare infrastructure: Our population will continue to grow older, live longer and the majority of people want to age in their own homes. We’ll need to develop accessible housing, strengthen our home care network and improve elder resources, especially in rural areas, so that people can grow old where they want, but safely and with ample support.

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Make a plan to vote now

This is not going to be a partisan political post. I truly believe senior care and caregiving is a bipartisan issue and will take the cooperation of members of all parties in order to pass much-needed legislation.

But the pandemic that has changed so much in 2020 is also changing the way we vote. How you vote and where you vote depends upon your local jurisdiction and personal preference; my only advice is to plan now if you haven’t voted already.

There are arguments to be made for and against the various forms of voting available this year. Here in Georgia, I took advantage of absentee voting and have already mailed in my completed ballot. Thanks to technology, I was able to monitor its progress and received electronic notification when it had been received and approved for processing.

For those who prefer to vote in person, check out your options for early voting. Many states are offering expanded voting locations and it may be a good way to avoid potentially long lines on election day. If you decide to go the traditional route and vote on Nov. 3, be prepared to wait in long lines. Hopefully it won’t be as bad as recent elections, due to the massive amount of people who are voting early this year.

And caregivers should keep COVID-19 in mind when making a voting plan, for yourself and your loved ones. Weigh the risks and comfort level when making your voting plan. Check with assisted living centers to see if they have a plan to help residents vote. For those needing a ride to vote, check out promotions from Uber and Lyft. Make sure to mask up if voting in person, and use hand sanitizer after touching the machine. The one caveat I would point out about waiting until election day to vote is with coronavirus cases on the rise in many areas of the U.S., do you want to run the risk of being sick and missing out on the chance to vote? Just something to consider.

After the election, the real work begins on working with those elected to create sensible, practical caregiving policies that offer families the support they deserve.

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Teens develop, win prize for dementia app

There has been so much bad news lately that I wanted to spotlight a story about what the younger generation is doing to support dementia research. A group of teen girls in Ireland used the pandemic lockdown for a worthwhile cause.

The mentor’s mother had dementia, which helped inspire the team to create the Memory Haven app. Designed for use by both people with dementia and their caregivers, it has features designed to address three main issues: memory loss, difficulty with recognition and speech impairment. I loved how thoughtful the app is, using tools like facial recognition and music to help lift the moods of those who are feeling down.

While the teens are a STEM (science, technology, engineering and mathematics) success story, they unfortunately faced sexism and racism along the way. I hope their inspirational story will encourage youth around the world to support dementia research.

You can learn more about the app and see it in action in this BBC report.

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Pandemic isolation taking deadly toll on those with dementia

Research has shown that social isolation can have a negative impact on anyone’s health, but seniors and particularly those with Alzheimer’s and other dementias are more vulnerable to its devastating effects. The pandemic has further tested this theory, with tragic results.

As a former dementia family caregiver, my heart broke for Dan Goerke and his wife Denise, profiled in The Washington Post this week. The images that accompany the story illustrate quite viscerally just how quickly a person with dementia can decline, physically and cognitively, when socially isolated. Weight loss and depression are common, among a more rapid decline in memory and speech skills.

According to The Washington Post analysis of federal data, there have been 13,200 excess deaths from Alzheimer’s and dementia since March in the U.S. That number is compared to the number of such deaths in previous years. While we may never know how much social isolation factored into this spike, the mandate that many nursing homes have implemented, effectively banning family members from visiting their loved ones in person, has taken a significant toll.

It’s not prudent to say that nursing home visitation should be reinstated without restrictions during a pandemic until a vaccine and more effective treatments are widely available. We’ve seen how COVID-19 has ravaged nursing homes and how superspreader events can lead to the deaths of our most vulnerable populations.

However, there could be a more sensible middle ground reached in some cases. Outdoor visits when possible, everyone taking safety precautions seriously, quick testing, limited visitation hours, etc. There are many stories about people visiting through windows, etc. and while this can be helpful, those with Alzheimer’s and dementia often benefit from touch. The image of the Goerkes, separated by a door threshold, with hands outstretched is so poignant.

The damage being done is not just to those with dementia, but to their caregivers. The emotional pain and stress family members are going through right now is unfathomable. As with most things and especially with this pandemic, there are no easy solutions, no one-size-fits all answers. But we must do better, and advocate for better outcomes. A visit to a nursing home during a pandemic does not have to lead to a death sentence, but banning visits can have a detrimental effect on those with dementia and their families.

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Help Against Nursing Home Abuse: Things You Should Know — The Diary of An Alzheimer’s Caregiver

It’s so important to recognize the signs of abuse in nursing homes and the steps to take if you feel your loved one is being abused in any way. This blog post by The Diary of an Alzheimer’s Caregiver provides a good overview.

Seniors and their families put a great deal of trust in nursing homes. Many of them believe that the decision…

Help Against Nursing Home Abuse: Things You Should Know — The Diary of An Alzheimer’s Caregiver

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Navigating the ER as a dementia caregiver can be challenging

Emergency room entrance sign with ambulance

Steve Shepard

I was moved this week when I watched the video of a Maryland woman who was distraught because she was told by hospital staff that she would have to leave her mother-in-law, who was in severe pain and has Alzheimer’s, alone in the emergency waiting room due to COVID-19 restrictions.

As a former dementia caregiver, I can empathize with the helplessness and the frustration that Laura Kramer felt. It’s ridiculous that Kramer had to take her mother-in-law to another county in order to receive treatment and be at her side as her family caregiver. You can watch her emotional plea.

My own father had multiple trips to the emergency room in the last year of his life while he was a resident at a memory center. Their procedure was also to leave the patient at the ER once admitted because they didn’t have the staff to wait with the resident. I often thought about how confused and scared my father must have been, alone in a chaotic emergency room atmosphere.

The good news is that Kramer’s experience forced the hospital to revisit its guidelines and admit that they had made a mistake. Of course COVID-19 restrictions are necessary in a healthcare setting, but no-exception policies could have deadly consequences when it comes to caring for those with cognitive issues. Kramer’s actions should be a role model for other caregivers who find themselves in similar situations.

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We Need to Stop Minimizing the Grief of an Expected Loss — Life, Love, and Alzheimer’s

Totally agree with Lauren. While I experienced some sense of relief that dementia no longer had control of my father’s mind, his death was still a profound loss.

How many times have you heard someone say, “My loved one died. Well, she was sick and we knew it was coming, but still…”? Why do we feel the need to offer that explanation? Why do we feel the need to minimize our loss by saying that it was expected? Why do we diminish our […]

via We Need to Stop Minimizing the Grief of an Expected Loss — Life, Love, and Alzheimer’s

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August 22, 2020 · 12:55 pm

Two new movies take fresh spin on eldercare, Alzheimer’s

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geralt/pixabay

I’m always on the lookout for films dealing with caregiving issues, Alzheimer’s and other dementias, as well as those that offer an honest look at growing older. I came across two interesting movies this week that I want to pass along to kick off your weekend. The first is Senior Love Triangle and the second one is Ice Cream in the Cupboard.

These films offer a unique perspective and won’t be to everyone’s liking. For those who prefer to keep their movies more in the PG range with no profanity, you may want to take a pass.  I found both films to be moving and thought-provoking, offering a raw yet empathetic look at the challenges that aging can present. More films are tackling topics such as aging, dementia, and family caregiving and I wholeheartedly support this trend.

Senior Love Triangle is based upon a photo book by Isadora Kosofsky. The story and moving images follow an 84-year-old man who is attempting to balance his relationships with 81-year-old Jeanie and 90-year-old Adina, with nursing homes serving as the backdrop. Dementia, other mental illness and how vulnerable seniors are preyed upon also are part of the storyline. Adult children often have a hard time with their elder loved ones finding romance in the care center environment, but this movie shows how important such affection and human connection is to older people.

Ice Cream in the Cupboard is about a middle-aged couple whose lives change forever after the wife is diagnosed with early-onset Alzheimer’s in her mid-fifties. The movie is based upon a true story. I appreciated how realistically the film depicted the challenges in dementia caregiving. It never shied away from the more brutal, violent aspects and never sugarcoated what Alzheimer’s caregivers may face on their journeys. However, there is also much love and devotion on display.

Both of these movies are available on video on demand. If you’ve seen these films, I’d love to hear your thoughts.

 

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The Memories Project selected as a top Alzheimer’s blog

Best Alzheimer's and Dementia Blog Award, 2020 by eMediHealth

☆☆☆☆☆ By eMediHealth ☆☆☆☆☆

 

I’m pleased to announce that The Memories Project was included in eMediHealth’s Best Alzheimer’s and Dementia Blogs for 2020.

I recognize just about every blog that made this list, from the major organizations to the personal bloggers like myself.  I was happy to see Alzheimer’s Daughter by Jean Lee, one of the founders of AlzAuthors, included on the list. Likewise, Kay Bransford does great work on her blog, Dealing with Dementia, covering important financial issues for those with dementia and their caregivers. Also making the list are two other blogs I frequently read, including The Caregiver’s Voice by Brenda Avadian and The Diary of an Alzheimer’s Caregiver by Rena McDaniel.

As many of you know, The Memories Project began back in 2012 as a tribute to my father, who died of Alzheimer’s. Over the years, it has grown into an awareness and advocacy blog for Alzheimer’s and other dementias, as well as their caregivers. I also documented my journey as my mother’s caregiver, who had colon cancer.

While it’s nice to be acknowledged, the true reward I receive for blogging is connecting with family caregivers and being given the opportunity to advocate for those who provide care for their loved ones. I’ve also learned so much from other caregivers. The caregiving community is smart, tough and compassionate and I am honored to be a part of it.

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