World Alzheimer’s Month: Free Streaming of Critically Acclaimed Documentary

11 Wednesday Sep 2013

Posted by Ann Napoletan in Advocacy and Awareness, Behaviors, Films, Helpful Resources, Mom, Ruminations, World ALZ Month

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In recognition of World Alzheimer’s Month, Independent Lens|PBS will offer free streaming of the documentary You’re Looking at Me Like I Live Here and I Don’t from 9/15 through 9/25!

Told exclusively from the perspective of Lee Gorewitz, a woman living with Alzheimer’s, all of the filming took place in an Alzheimer’s care unit. The film originally aired on PBS’ Independent Lens series and has received rave reviews from the Alzheimer’s community as well as film critics far and wide.

This riveting film grabbed my attention immediately and held it through the final scene. When it ended I felt sad — not because of the subject matter but because I wanted to spend more time with this unique and endearing woman with whom I’d fallen in love. I missed her, so I turned around and watched the entire movie again. – Marie Marley, Huffington Post

I must say that after reading just a bit about Mrs. Gorewitz, I am very anxious to see the documentary. Described as a charismatic, “exceptional and resilient soul… who often shakes a tail feather long after the music has stopped… and who will not let us forget her, even as she struggles to remember herself,” I can’t help but think how much that sounds like my mom!

The following synopsis was taken from the film’s website:

In Danville, California, Lee Gorewitz wanders on a soul-searching odyssey through her Alzheimer’s & Dementia care unit. Confined by the limits of her physical boundaries, she scavenges for reminders of her life in the outside world. Yet her search is for more than a word, or a memory, or a familiar face. It is a quest for understanding.

A total immersion into the fragmented day-to-day experience of mental illness, You’re Looking at Me Like I Live Here and I Don’t is the first documentary filmed exclusively in an Alzheimer’s & Dementia care unit, and the first told from the perspective of someone suffering from Alzheimer’s disease. The film reveals Lee’s penetrating ruminations and charismatic vitality, challenging our preconceptions of illness and aging. Here is the journey of a woman who will not let us forget her – even as she struggles to remember herself.

Remembering…

02 Monday Sep 2013

Posted by Ann Napoletan in 4M, Advocacy and Awareness, Behaviors, Eason House, End of Life Signs, Expectations, Heartland, Hospice, Mom, Ruminations, Uncategorized, Weight Loss

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alzheimers, dementia, end of life signs, hospice

It’s nearly impossible to believe a year has passed since Mom began her sharp and unexpectedly rapid decline at the hand of Alzheimer’s. It was about this time in 2012 that I realized scheduling a big vacation months in advance was a bad idea. At the time, though, things were “okay”… who knew what a difference one summer could make.

Praying for Comfort

There were fewer and fewer good days; she wasn’t eating – beginning to even turn her nose up at some of her favorite sweets – and was losing weight quickly. From that point on, her diet consisted primarily of Ensure until the end. Oh how excited we felt when she would eat a cracker or a couple of grapes; more than that and it was as though we’d hit the lottery, we were downright joyous!

photo-58 In those weeks, it was indescribably painful to see her so distraught; screaming, hitting her head, and often inconsolable. In the few rare peaceful moments she had, she would stare at the ceiling, entranced, with a soft smile on her face and eyes almost sparkling. There’s not a doubt in my mind it was the very beginning of her transition. As upsetting as it was, seeing her at peace like that was also an incredible relief, but those moments of respite never lasted long. All too soon, the terror she was obviously feeling would return.

Time For Hospice?

Finally, the time came where I knew I needed to make a decision. I called hospice to have them come out and do an assessment; unfortunately, we had a mind blowing, horrific experience with the intake nurse. I ended up asking her to leave before the process had been completed. On Monday, I called the office and told them to destroy the paperwork – I had changed my mind (there’s more to the story…).

It was the beginning of the final dizzying, nausea-inducing rollercoaster ride that lasted for the next 3 or so months. I thought I had seen it all, but I hadn’t seen anything yet…

Hopelessly Unpredictable Progression

So crazy to think earlier that same year I truly thought that she could easily live another 10 years or more. Physically, she was strong. But things can – and often do – change very rapidly where this disease is concerned.

Mom wasn’t done fighting, though. While she never bounced back to where she had been, she did turn things around one more time – for a short spell – before that final downward spiral. I went from being certain she only had weeks left to believing she might actually rebound; however, that was not the case. Amazing how your mind plays games, but with this disease, “rebound” is a very relative term…

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If you would like to help us raise awareness, research dollars, and funds to help families on this journey right now, visit Marilyn’s Mighty Memory Makers’ page to join the team or make a monetary donation. In just two weeks, we’ll be walking to #ENDALZ.

Potpourri of Topics

30 Thursday May 2013

Posted by Ann Napoletan in A Place for Mom, Alzheimers.net, Behaviors, Blogging, Caregivers, Caregivers.com, Coconut Oil, Diet, Elopement, Grieving, Helpful Resources, Prevention, Products, Safety, Support system, Tips, Wandering

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petals This week on the APFM blogs, everything from GPS technology to coconut oil, which oddly (at least to me) can be a touchy subject with some. I’ve always been of the opinion that if it won’t harm me and there’s a chance it may help, I’ll give it a go – I have nothing to lose… especially where it comes to this disease.

On the GPS front, if you aren’t familiar with location based services in the context of wandering, it’s definitely something to check out. I would have loved to have access to this type of monitoring when my mom was still living independently. It’s pretty amazing, and available for a reasonable monthly fee. If you have a loved one living at home, this might be just what you need to give you some much needed peace of mind.

Last but not least, I recently saw an article that I thought was worthy of sharing. We’ve all been in that awkward situation – a friend loses a loved one. What do you say? Now having experienced what it’s like to be the one grieving, I think, “I’m sorry, let me know if there is anything I can do,” accompanied by a hug (if it feels right) is perfect. Nothing more, nothing less.

In the article, Carole Brody Fleet tells us what NOT to say. And believe me, it’s easy to unwittingly say the wrong thing despite having the best of intentions. I’m sure we’ve all done it. This was a topic at one of the grief classes I attended, and it was interesting to get other perspectives… things that I may have said in the past, I now realize are best left unsaid… Things like “She’s in a better place.” – innocent enough, and true if that’s in line with your beliefs, but it really doesn’t help the one hurting. Hell, five months later it’s still true for me. I know she’s in a better place, and I’m extremely grateful that she’s no longer suffering – but my heart still hurts more than words can begin to describe. The gap between what the brain knows and what the heart feels is immense.