Walking as an intervention for Wandering!

Joy Johnston:

Wandering is one of the more terrifying aspects of dementia. This is a simple method that could be used to reduce wandering episodes at home and in facility settings. My dad was a walker for sure!

Originally posted on Creating life with words: Inspiration, love and truth:

walking groupThe following is part of an assignment I completed for the University of Wollongong Masters of Science in Dementia Care degree I graduated in last year, and highlights how allowing residents in aged care to walk regularly, can positively impact their life, as well as reduce what others see as ‘challenging behaviours’!

Specifically, we were asked to use the BEET tool workbook (this tool allows clarification of the question behind the issue, idea or problem, including behaviours of concern, by ascertaining the reasons for seeking engagement and change, evaluating the evidence, identifying who else we need to engage with and describes a process by which everyone concerned can meaningfully engage in partnership. In this way, it strives to be person centred, as it is inclusive of the client or resident.

The structure of the BEET tool is designed to allow clarity around the issue, to involve all stakeholders, to be…

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Spotlight on devastating diseases at the Oscars

I’ve heard a lot of criticism about this year’s Oscars regarding the lack of racial diversity of the top nominees. But from my perspective, there was quite a bit of diversity when it came to showcasing people living with debilitating diseases. For image-conscious Hollywood, and its obsession with being forever young and perfect, I think this was a big step in the right direction that is being overlooked.

Of course, with my main focus on Alzheimer’s, I was thrilled to see Glenn Campbell’s final song receive an Oscar nomination. I’m not a Tim McGraw fan, but he did a beautiful and sensitive rendition of the song. Gwyneth Paltrow introduced McGraw and talked about Alzheimer’s.

BSM Studio/Sony Pictures Classic

BSM Studio/Sony Pictures Classic

Julianne Moore, as expected, won best actress for her portrayal of a woman with early-onset Alzheimer’s in “Still Alice.” I was thrilled, as she is one of my favorite actresses. She researched and spent time with those who have Alzheimer’s so she could deliver an authentic performance. During her acceptance speech, Moore talked about making Alzheimer’s more visible to the general public so we can raise awareness.

But there was more than just Alzheimer’s represented at the Oscars. The equally devastating disease, ALS, was also in the spotlight. Not only did the best actor award go to Eddie Redmayne, who portrayed the famous physicist Stephen Hawking in “The Theory of Everything,” but Richard Glatzer, one of the directors of “Still Alice,” is living with ALS. In fact, Moore mentioned during her acceptance speech that his condition prevented him from being at the Oscars.

So to many, the Oscars may have been boring and lacking in diversity, but for those of who have been touched by one or both of these terrible diseases, it was a night to remember.

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On being mortal, from a doctor’s perspective

I watched an interesting Frontline special about end-of-life issues, from the perspective of a doctor treating terminally ill patients. The show featured Dr. Atul Gawande, who wrote the book, “Being Mortal: Medicine and What Matters in the End.” The book came out last fall, but I have not had the chance to read it yet. Another one added to my wish list, so many good books, so little time to read them!

being mortal cvr

In the program, Dr. Gawande tracks other doctors and interviews them about their approach to end-of-life care. Because of some negative experiences, I sometimes unfairly assume that the typical doctor’s main goal is to prolong life for as long as possible, quality of life be damned. But this documentary highlights the emotional turmoil that doctors experience when they are forced to tell their patients that medically speaking, there is nothing else to be done and it is time to transition to palliative care. The doctors feel like they’ve failed their patients when they cannot heal them.

Some patients accept the bad news with peaceful resignation, others go into denial, and still others fight the good fight for too long. One of the saddest stories was of a young woman about to give birth who was told she had stage IV lung cancer. She gave birth with a collapsed lung and immediately began a harsh and toxic treatment regimen. Of course one can understand why, she had so much to live for! But her husband now regrets the time she spent so ill from the treatment, which did nothing to extend her life. He wishes they had spent more quality time together as a family.

While somber in nature, the program offered a variety of takes on how to approach end-of-life care. It’s worth checking out. I watched in on the PBS channel on Roku.

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Glen Campbell: I’ll Be Me

Joy Johnston:

Excellent review. Looking forward to seeing this, as I have been following his journey with Alzheimer’s and his remarkable tour.

Originally posted on The Long and Winding Road...:

This week, I saw both I’ll Be Me and Still Alice. They were very different, but each was spectacular in its own unique way.

I think the Glen Campbell movie was the more difficult for me to watch for several reasons. The fact that it’s a true story makes it especially poignant, and for people of my generation it’s shocking to see an icon like Glen Campbell declining in this manner. As expected, there were also moments that reminded me very much of my mom.

I’ll Be Me is a documentary about Glen Campbell’s 2011-2012 farewell tour. The family decided to move forward with the tour despite the Alzheimer’s diagnosis Glen had received. Those closest to him didn’t expect the family to be on the road for more than five weeks; however, the superstar surprised everyone. The tour played more than 150 shows over the period of a year…

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Movie review: ‘Still Alice’ offers haunting, devastating look at Alzheimer’s disease

I read Lisa Genova’s fictional account of a professor diagnosed with early-onset Alzheimer’s disease quite a while ago, and was quite moved by the novel. I was excited to learn that Julianne Moore, one of my favorite actresses, was playing the lead role. It is rewarding to see the film receive so many positive reviews, and Moore collect many awards and accolades for her sensitive portrayal of the main character. The fact that one of Hollywood’s most respected actresses took on this role and is now receiving Oscar buzz will hopefully help raise awareness.

Some have questioned the focus on the familial form of early-onset Alzheimer’s disease, which is quite rare, but I think there is value in showing the general public that Alzheimer’s is not just an “old person’s” disease. The more readers and moviegoers can sense how profoundly this disease can destroy someone at the prime of their life, and the devastating impact the disease has on families, hopefully the more donations will come in for research and care funding.

BSM Studio/Sony Pictures Classic

BSM Studio/Sony Pictures Classic

It’s worth noting that one of the film’s directors, Richard Glatzer, has ALS, another disease that slowly robs one of their independence.

I went to see the movie on a Monday afternoon, and was pleasantly surprised to see about 30-40 other theater patrons. I expected only a handful. Let’s face it, the movie is not escapist, blockbuster entertainment.

I thought Julianne Moore offered a very sensitive and realistic performance. She spent a lot of time talking with those who have early-onset Alzheimer’s disease, as she was determined not to show anything in the film that was not accurate. The movie mainly follows the book, with some changes that I didn’t think hurt the story.

As for the rest of the cast, Kristen Stewart was well-cast as the youngest “black sheep” daughter. What I found most profound about the film was that Alice so wants her youngest daughter, who is an aspiring actress, to be like her other children (one’s a lawyer, the other in med school.) Before the disease, she cannot see how her own profession, as a linguistics professor, is more closely aligned to the theatre world than law or medicine. As the disease progresses, Alice and her youngest are able to bond over language, even as Alice is rapidly losing her ability to communicate.

I thought Alec Baldwin was miscast as the husband but he gave a surprisingly restrained performance (not easy for him!)

So definitely a must-see. Perhaps because I read the book and knew what was going to happen, I didn’t find it to be a total tear-jerker, but it did leave me profoundly moved.

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Another heart-stopping false alarm

So I finally was able to set my mom up with a personal care service, in addition to the home nurse visits. The personal care attendant was supposed to take my mom grocery shopping yesterday afternoon. Around noon, I was at work and received a call from a number that I did not recognize but with the same area code as where my mom lives.

I answered and it was the woman who runs the personal care agency. She said the attendant going to see my mom finished up a bit early with her previous call and she headed over to my mother’s house a bit early. But she knocked on the door multiple times and there was no response.

alarm bell

So of course I go into immediate panic mode in my head. Just like in those commercials, Mom’s fallen and she can’t get up!

I told the woman I would try calling her phone number and if she didn’t respond, there is a house key in a lockbox on the property.

I could feel my heart pounding with every ring on my mom’s line. Finally, Mom picked up. She sounded a little frazzled.

Turns out Mom was getting ready in the bathroom which has a loud heat vent. She couldn’t hear the knocking.

So Mom was okay, just a bit annoyed that the attendant was early … don’t mess with elderly people’s schedule! This is true also for those with dementia, any change of plans or a schedule can really upset them. It’s something many of us caregivers have learned the hard way.

It took a while for my heart rate to return to normal, but so grateful that it turned out to be a false alarm.

What kinds of false alarms have you experienced as a caregiver?

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Interesting self-analysis of Alzheimer’s from Greg O’Brien

NPR recently featured an interview with Greg O’Brien, a journalist with early-onset Alzheimer’s.

I found O’Brien’s personal take on Alzheimer’s quite profound.

I like how visually he described the disease, saying, it is like “a plug in a loose socket” that you keep trying to plug in but eventually it stops working and the light goes out.

On Pluto by Greg O'Brien

On Pluto by Greg O’Brien

The one point that really struck home with me was when he describes how having Alzheimer’s disease forces you to find your own identity each and every day. He says the pieces of his self-identity, the who, what, when, where and how are like cards carefully arranged in a file cabinet.

“Then at night, someone comes in and they take all the files out and they throw them all over the floor. And then you wake up in the morning and say, “Oh my God, I have to put these files back before I realize my identity.”

I thought that was a very simple yet powerful way to sum up this disease.

O’Brien has written a memoir, “On Pluto: Inside the Mind of Alzheimer’s” and I plan on reading it soon.

If you have read the book, I would love to hear your thoughts.

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