Dr. Janna Rehnström, one of Dr. Fuchs’ longtime friends and collaborators, has helped establish a fund in memory of Anna-Riitta and her husband & colleague Fritz. Dr. Rehnström heads the KOTA Alliance. KOTA is an incubator and co-working space in New York City for not-for-profit organizations, social enterprises, and women-owned businesses whose global mission is to improve and empower women’s lives.
The interest from the endowment will be used to support small and medium-sized organizations under the Kota Alliance umbrella, primarily those working for reproductive health and the education of girls in a global context. With the first payout from the fund, the organization Aware Girls (www.awaregirls.org), a Pakistani organization whose founder is now in New York, was chosen as the first recipient of the residency at our offices in New York. Together with KOTA they are taking steps to strengthen the organization in Pakistan, as well as work among South Asian immigrants in the New York area. The organization was the first one in Asia to establish a hotline for safe abortion, among many other accomplishments.
If you’d like to help organizations working to improve the lives of women around the world, please consider dontating:
I just enjoyed the wonderful, weekend-long 2016 Blackbird Film Festival in Cortland, NY.
Sam Avery and his team organized a wonderful weekend and selected an outstanding slate of films.
Be sure to visit the festival site to see the full list (and make a point of trying to see the films when you can!). Alas, I was unable to see every film at the festival – schedule conflicts are fact of life at fests, after all – but some of the stand-outs for me were:
- Noon Gun a new feature by Caley MacLennan
- Long John a hilarious and warming short by Joe Bellavia
- Pepper And The Salt Sea a short filled with magical realisim by fellow Brooklynites Don Downie and Stacie Capone
- The Small Time a side-splitting pilot for a web series by Jack Canfora and Andrew Rein
- Pride And Poo a darkly comic tale of Man vs Nature by Brad Silvius
- Feeling Wanted and My Identity two powerful and moving short documentaries by the incredibly talented Yasmin Mistry
I was very honored to be in such good company. After seeing so many exceptional films at the festival, Iwas flabbergasted that i live In Life won both Best Short Documentary and Best Director!
During the last few years of my Mom’s illness, there were times when visiting with her was very emotionally taxing for me and my siblings. Not being recognized by one’s own parent hurts. That pain discourages one from visiting, and it’s all too easy to rationalize not visiting by telling oneself “what’s the point – Mom won’t remember anyway?”
I was spared a lot of that process, since I lived near Mom and could visit her frequently. Mom always smiled when she saw me, so I knew there was some kind of recognition even if she couldn’t remember my name. That smile made it all worth it.
I’ve recently come across some research (via an NPR piece) that sheds light the ’emotional memory’ of demential patients, and how it lasts even when factual memory does not.
You can read the original study here. Here a few salient takeaways from the study’s lead author, Edmarie Guzmán-Vélez:
You know, all of these people that say it doesn’t matter if I don’t visit my grandma because she won’t remember -and it just shows it does matter. Our actions do matter.
So go spend time with your relative who suffers from dementia! You will make them happy, even if they can’t remember why.
As Ms Guzmán-Vélez says about her own study:
…it gives me that extra reward I guess to know that every thing that I do is impacting them. And it does make me try to be a better person with them or try to give them good experiences ’cause I know that will make them happy and that happiness will last for a long time.
I’ll second that from my own experience with Mom. The joy I felt knowing I’d brightened her day and made her happier went a very long way to erasing the pain I felt watching her illness inexorably diminish her.
Denver was great. The Starz Denver Film Festival was great! They took great care of us filmmakers and screened some amazing films. I got to see a bunch. They were all good, but Wild Canaries and Tomorrow We Disappear really stood out! Do keep an eye for them, see them if you can!
I got some more great news while I was at the festival. “i live In Life” has been accepted at the Atlanta International Documentary Film Festival!
Thanks for everything Denver! I hope to be back soon!
After over thirty rejections, i live In Life has been accepted to its first big festival! It will screen in the Starz Denver Film Festival as part of the First Look Student Film Program. The Festival runs from Nov. 12 to 23d, and as I get more details of the festival schedule, I’ll post it. Check the Screenings page for updates!
Let’s hope this signals the turning of the tide! I’m still waiting to hear from several more festivals!
Ah, woe betide…. CPH:DOX, a festival I was really hoping to be in, declined i live In Life.
That’s a bummer, make no mistake. But I’ve submitted to another half-dozen fests, and i’m still submitting. Thessaloniki is next!
Writing about Alzheimer’s isn’t often fun. Even good news, which is pleasant to bring to you, isn’t necessarily fun.
Today, however, I got lucky. I found out about an article in the BMJ Open online journal published in January by a group of Australian scientists. I got to read about “The SMILE Study”, which included “LaughterBosses” and “ElderClowns”. I kid you not.
The SMILE study (aka The Sydney Multisite Intervention of LaughterBosses and ElderClowns) was, by one measure, a failure. They wanted to find out if humor could alleviate depression in dementia patients. This they did not find.
More on that later, because what they did find is just as good. Humor does reduce patients’ agitation and anxiety. They found that their humor intervention could reduce the occurence of “two agitated behaviours” from daily to once a week.
From daily to once a week. Those readers among you who’ve spent time with a loved one with Alzheimer’s can tell you what a big deal this is. It’s big! For one thing, the results are just as good as what is achieved with Risperidone, a common anti-psychotic, but without the side effects! My Mom was taking that when she was at home – though thankfully at hasn’t been necessary since she moved to her care center. For another, let’s face it, it doesn’t just reduce agitation and anxiety, it makes people laugh and smile. Can Risperidone do that?
This is good news for everyone, but especially for people who are caring for someone with dementia. Make them laugh! Can it get more win-win than that?
To return to the question of depression, it wasn’t a complete failure. Here’s what the researchers write:
Depression, other forms of behavioural disturbances and self-rated quality-of-life all improved more in residents who experienced higher doses of engagement as a result of humour therapy, suggesting that humour therapy does change these outcomes, even though there was not a statistical advantage of intervention over control groups.
The conclusion is not, then, that humor cannot treat depression in dementia patients, but only that this study couldn’t prove that it can. Further study is most definitely warranted by these results.
But to get back to my original point, this was also fun. I mean, where else could read a sentence like “LaughterBosses were not tested for competency in delivering humour”? And reading “some suggest that the label ‘ElderClown’ might not be appropriate in describing the work of the professional performers” immediately called to mind an over-sensitive performer scoffing at term. “Sir, I am an actor!“
“Resistance to care.” What a wonderfully beige turn of phrase, devoid of any of the emotional turmoil that it immediately brought to my mind. If you haven’t cared for a person with dementia, you probably can’t grok how a simple, clinical description evokes so much feeling.
I came across the phrase in this article, Polishing the Gems Who Are Alzheimer’s Patients, by Serena Gordon in HealthDay Reporter. It’s about how difficult it can be for caregivers to be able to understand, and hence deal with, the mental state of their patients.
“Resistance to care.” I’m very familiar with it, and I’m one of the lucky ones: my Mom has the means to afford the care she needs. “Resistance to care” is woefully inadequate to describe the fight my Mom and I had when she needed to see a dentist. One of the worst fights I ever had with her. She was seeing a new dentist for the first time, and the dentist’s office needed some basic medical background information that neither Mom nor I knew off-hand. When I tried to contact her internist’s office for the information, Mom threw what would politely be described as a Category 10 hissy fit. She utterly refused to allow me to call the doctor’s office. Apparently the doctor’s ‘nice’ receptionist had retired, and been replaced with a ‘mean’ and ‘incapable’ one. My Mom thought that because the new secretary wasn’t as good as the old one, the doctor would have to get involved (I don’t understand by what logic my Mom came to that conclusion), and she simply would not allow me to disturb the doctor.
Oy vey. So we got into a huge shouting match. I begged, I pleaded, I got on my knees. (Really, I did.) To no avail. This was before I fully realized my Mom had Alzheimer’s. I’m pretty sure I was in denial; though to be fair I can’t really tell the difference between denial and hope in a situation like this. I’m pretty ashamed of my behavior, of being so angry with her.
Yet even after it was clear that my Mom had a serious case of Alzheimer’s, we’d get into fights. In the early days after her diagnosis, she was still pretty self-sufficient, as far as getting dressed, going to the toilet, basic stuff like that. But she would get lost in the neighborhood, dangerously fail to respect ‘don’t walk’ signs when crossing streets, and so on. Most importantly, she couldn’t competently walk her dog, who as a headstrong dog with some bad habits, required a firm hand on the leash that Mom couldn’t provide. So my siblings and I arranged for some additional dog walking services. That did not go over well!
It’s actually hard for me to remember those episodes when we fought about the dog-walking. They were so ugly and shameful I’ve done my best to forget them. Even though I had learned very quickly that anger never worked, and had switched to pleading, coaxing and begging, Mom was so excruciatingly intransigent. Ms Gordon’s article hits the bulls-eye: what was hard for me to realize that my Mom’s disease not only diminished her ability to handle walking the dog, but it also prevented her from being aware of that. A heart-attack victim knows they need to be careful exerting themselves, but an Alzheimer’s patient doesn’t know their abilities are diminishing.
In an ironic twist, my siblings and I never actually dared tell Mom she had Alzheimer’s. Practically all my life – almost as early as I can remember – Mom has been convinced she had the disease. She was pathologically afraid of it; perhaps because her father had suffered dementia, probably Alzheimer’s, and perhaps as a scientist, her sense of self was utterly intertwined with her intellect. So we dreaded even breathing the word ‘Alzheimer’s’ anywhere near her. That fear may not have been unreasonable. Many times she’d talked about committing suicide if she started to show symptoms of it. But I wonder now if it would have made any difference had we. Would she have killed herself? Unlikely, but she had an iron will; if she really wanted to, she would. Would it have made her more cooperative? I doubt it – for the same reason.
Eventually, Mom stopped being so uncooperative. My sister figured out why. As the disease progressed, Mom would have periods of relative lucidity, when she’d have a pretty good idea of why we were trying to intervene in her life. In those periods, she’d fight to reassert her control over her life. And I do mean fight. All the sharp kitchen utensils – forks, knives, scissors, and so on, had to be hidden, since Mom had been known to brandish them at the caregivers. She’d also broken a table to use the leg as a club, and tried to hit my sister with a chair! But at other times, when she was less lucid, she wouldn’t feel threatened by that loss of control, and wasn’t so combative.
Perhaps the most horrible thing about that period was catching myself feeling grateful that her disease was getting worse, since she was so much easier to deal with. I feel like I die a little inside every time I remember that.
Well, actually, just on YouTube.
I even managed not to seem like a complete knucklehead in the process. I’m really happy that the film was picked by the audience as the best of the night. Filmmaking can savage one’s emotions, and when you put your self and your family into your film, you can feel pretty vulnerable to that savagery. The flipside of course, when good things happen – like this – it feels all the better.
My thanks go out to Geoffrey Guerrero, organizer of the Katra Film Series, and Jamal, Fady and Camille at TheCinemaCouch.com for the after-party interview. (Be sure to check out their YouTube Channel!)
Don’t forget! You can also stay up to date with i live In Life on facebook!