Still Alice - A Review

 Still Alice is a compelling debut novel about a 50-year-old woman's sudden descent into early onset Alzheimer's disease, written by first-time author Lisa Genova, who holds a Ph. D in neuroscience from Harvard University. Alice Howland, happily married with three grown children and a house on the Cape, is a celebrated Harvard professor at the height of her career when she notices a forgetfulness creeping into her life. As confusion starts to cloud her thinking and her memory begins to fail her, she receives a devastating diagnosis: early onset Alzheimer's disease. Fiercely independent, Alice struggles to maintain her lifestyle and live in the moment, even as her sense of self is being stripped away. In turns heartbreaking, inspiring and terrifying, Still Alice captures in remarkable detail what's it's like to literally lose your mind... Reminiscent of A Beautiful Mind, Ordinary People and The Curious Incident of the Dog in the Night-time, Still Alice packs a powerful emotional punch and marks the arrival of a strong new voice in fiction

This book was given to me to read by one of my resident's daughters. She said it had been a powerful read for her and helped to give her insight into her mother's disease. As a director of a dementia-care unit, I felt compelled to read it, not only for the person who recommended it to me, but for all of my residents too. I feel a responsibility to do as much as I can to understand where they are emotionally, cognitively, and physically. This book was an amazing picture the heartbreak that surrounds this disease.

I cried my way through the last half of this book as Alice begins to deteriorate further. It gave me such perspective on the lives people have before this disease robs them of themselves. This book also has helped me to empathize more with the family members who struggle so much with the Alzheimer's diagnosis. I would absolutely recommend this book to people working in the long-term care field and those who have a loved one struggling with dementia. No, it is not an uplifting book, but it will leave a lasting impact on those who read it.

Insights into Alzhiemer's Disease

I started blogging tonight with the intention of doing a book review on The Devil's Highway, but that will have to wait. I have too many thoughts in my head about my past week and all of the amazing things I have learned. 

The last three days for me have been incredibly busy. I have spent my days at Navy Pier in Chicago for an educational work conference for people working in long-term care and related fields. I have sat through 9 educational sessions over the past three days and I have to say, I have walked away inspired and excited about developments in my field (Dementia Care). Today I was privileged to sit through two of the best sessions of my experience. 

My first session this morning was all about taking the dis-ease out of Alzheimer's disease. We talked about the physiological symptoms of the disease and then the emotional, social, and spiritual "symptoms" of the disease, which make up the dis-ease (un-ease, discomfort). The speaker made 4 main points about the differences between the two spheres and then showed a video that I cannot wait to get my paws on. It was phenomenal. (Scroll to the bottom for a clip)

The Four Distinctions from Memory Bridge:

1. Alzheimer's Disease (AD) is a disconnetion between neurons in the brain (caused by plaques and tangles). The dis-ease is a disconnection between people.

2. AD occurs in the brain. The dis-ease occurs in the body- both individual and communal (i.e. family-body, etc.)

3. AD is physically painless (but the most feared disease). The dis-ease of it is profoundly painful (isolation, fear of loss of self, estrangement, etc)

4. AD cannot be cured. Dis-ease can be ended.

I strongly believe that it all stems from education. The more people understand the disease and how it will effect their loved one, the better they will be able to cope with it and have a more peaceful experience.

My second session today was a panel of people with Early-Onset AD (diagnosed before the age of 65). The individuals are a part of a support group through Rush University. They were incredibly candid, honest, and open about the effects of the disease, coping with it, grieving their futures. It was amazing to listen too and an incredibly profound experience for me. I actually knew a couple that was on the panel because they have a loved one at my facility. I was in tears by the end of their presentation. It was amazing and I feel so honored to have been there.  Here are some of the quote I jotted down from this session:

Regarding feelings about the diagnosis:
Bob "I decided to live with as much grace... at the highest capacity I can, for as long as I can."
Tom " I don't want to sit around and mope and feel sorry for myself. That does happen, but I want to have a purpose"

For why he speaks on AD:
Tom "It is better to give than to receive. That has always been my philosophy. I am a recovering alcoholic and I still run support groups for AA. It doesn't matter to them that I have this and I haven't messed that up yet"


About the future:

Tom: "I know what's coming. I don't know when, but I know what the outcome will be. I want to do the best I can and be the least burden on my caregivers and family"
Bob: "One day, it won't wait for me.

Advice for caregivers:
Tom: "Good Luck!" (haha) "I would honor what you are doing for me. Stay positive, seeing a smiling face will give me hope"
Barbara: "Distinguish people as individuals. Keep communication- even non-verbal. Smile"
Bob: "I pray for you. It takes a special-type of person to care for those individuals and I just think, What a job, and it takes such special people to do this type of care."

What an amazing experience.
Here is a clip from 'There is a Bridge' - just to give you a taste.

Sensory Kit (Work Project)

Well, most of my readers know that I work in long-term care and am supervisor of a mid-stage unit and a late-stage unit for those with dementia. I want to explain an itty bit what dementia is and how it effects our elders before I get into my project.

Dementia is basically a disease which causes "brain failure". Literally, the brain shrinks and holes start to form. Here is an example of a healthy brain:

 

And this is a brain with Alzheimer's disease - same age, race, sex, etc. 

The hallmark symptom in Alzheimer's disease (and most other dementia) is short-term memory loss. A person's ability to form and store new memories is gone. This disease is progressive, irreversible, and will eventually lead to death. As it progresses a person will eventually lose the ability to walk, speak, or even feed himself. Now, I know this is all sounding very negative, but it is important to understand the disease to see the benefit in what I am going to now explain to you. At the latest stages of dementia a person can still experience moments of peace, joy, and happiness- we just have to figure out how to reach that person. Sensory stimulation (hearing, smelling, tasting, feeling, and hearing things) is a really good way and proven method in reaching those in the latest stages (and earlier) of the disease.

This is a sensory box themed for the month of February.

It contains scented lotions (smell and touch w/ hand massages), a feather boa (sight and touch), a CD of old music (hearing), a faux rose (sight, touch), old photos of weddings (sight), a teddy bear and stuffed valentine heart (sight and touch), a book of love quotes and poems (hearing, sight, touch), scented, rose-shaped soaps (sight, smell touch), lip-smackers in strawberry and watermelon (sight, smell, touch, and taste), a light-up bouncy ball (sight, touch), and a flameless scented candle (sight, smell). All of these things can be used to trigger memories and reminiscence. I recently heard a theory that the long-term memories are they, just not accessible by the person, but can be triggered and create a moment of joy.

Lipsmackers, Rose, scented soaps

Old wedding photos, "Crooners" CD, and Love book

Sophie was being very helpful... or trying to eat the teddy bear - whatever she's adorable.

Lotions that smell like flowers (Valentine bouquet?) and strawberry

Teddy bear, feather boa, rose petals, bouncy-light-up ball

All I did was wrap a shoebox in pretty paper and go to the dollar store - I printed the photos off of the internet. This box can be used by my staff for 1:1 visits with residents who are restricted to their rooms or bedridden or it can be used in a small group setting for lower-level residents. I put a list of what is in the box on the underside of the lid. By the end of this year I hope to have one of these boxes for every month of the year.