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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Fall feelings

As world events send shockwaves on a daily basis, it becomes imperative that we find some respite in our daily lives. This is especially true for caregivers, who face both external and internal challenges and may not have an adequate support system.

I turn to nature when feeling overwhelmed. It’s free, it’s right outside my door and it’s a simple way to try to center myself in the moment when my brain reels, feeling like a runaway train of thoughts.

Whether you live in the city or country, there are natural wonders to be discovered and appreciated. For example, when I travel to New Mexico, in a region that has both mountain and desert elements, I love the unique flowering plants I see there along with the bluest skies, free of the pollution that mars the city skies I’m more used to seeing. In Atlanta, I live in a city known for its canopy of trees. I’m lucky to live in a neighborhood with many gardeners who offer beautiful displays of blooms almost all year long.

During a typical work day, a 5 to 10 minute dog walk may be my only respite from all of the craziness. I make a point to seek the vibrant blooms, to watch the squirrels scamper up the trees, a butterfly flutter by my hand. Now that the weather has cooled off and the mosquitoes are leaving, I sit in a cozy nook I made for myself in the yard, where I can look upon the memorial area I’ve created for loved ones and watch the activity at the busy bird feeder. I find these moments grounding and rewarding.

It is my hope that no matter your circumstance, you are able to carve out these moments of respite. They are even more valuable in these times of turmoil.

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Setting personal boundaries in caregiving

Good tips! Establishing boundaries as a family caregiver is so important. The initial resistance you may face can help you avoid caregiver burnout down the road.

Read the entire post on What to Do about Mama?

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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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When our departed loved ones return (in our dreams)

Jay Mantri/Pixabay

Recently, I had a disturbing dream that on the surface sounds like a nightmare. In the dream, I saw my mother’s corpse. It wasn’t in a coffin, but placed on some kind of shelf. Then she woke up and began moaning and talking.

I remember in my dream trying to tell myself it was just a dream, as it is recommended to do to wake yourself from a nightmare. But instead of Mom going into full zombie mode on me, the dream took more of a domestic drama turn. Instead of being chased by a flesh-eating monster, I faced a chilling dilemma: how would I manage caring for my mother again? As with most dreams, there was no satisfying conclusion but lingering questions about housing and financial issues.

At least I know why I had such a bizarre dream. There was a story in the news about a woman in Detroit who had been declared dead but was found alive in a body bag hours later at a funeral home, where she was about to be embalmed. The images of the bodies of COVID-19 victims being stacked haphazardly in storage rooms and sheds has also haunted me.

It was a disturbing dream, but it intrigued me more than frightened me. This scenario has been played out in books and films but considering it from a caregiver’s perspective presents more practical questions than supernatural ones.

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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

Remembering Trini Lopez

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This week, musician Trini Lopez died. I immediately thought about my mother and how saying Trini’s name helped her in her recovery from a grueling cancer surgery.

I was familiar with many of my mother’s favorite musicians, which included Elvis and country legends like Hank Williams and Willie Nelson. But I had never heard of Trini Lopez until my mother became ill and required emergency surgery. Her mental state had taken a decline due to a delayed diagnosis, and she faced recovering from general anesthesia while being bedridden, trying to regain her physical strength.

Mom’s mental state bounced back pretty quickly, but there was one name she couldn’t remember to save her life, and it was an important one: her surgeon, Dr. Lopez. After many false starts, Mom came up with an unusual way to prompt her memory, by connecting the doctor with Trini Lopez, whose music she enjoyed as a young adult. When Dr. Lopez would make his rounds and Mom would be trying hard to remember his name, I would say, “Trini” as the clue and then Mom would say, “Lopez!” I’m sure the doctor thought we were a little, ahem, eccentric, but it worked every time.

It was one of the more lighthearted moments during Mom’s lengthy recovery period. I bought her a Trini Lopez CD when she returned home and she loved to play it. So it was fitting that when she died, that beloved Trini Lopez album was playing.  I touch upon this in one of my essays in The Reluctant Caregiver.

I’ll always have fond memories of Trini Lopez for the joy that he brought my mother and the memory aid he provided in the hospital.

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

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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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