Dancing with Rose

This weekend, I bumped into an INCREDIBLE read about Alzheimer's - Dancing with Rose: Finding Life in the Land of Alzheimer's by Lauren Kessler. It was a real read about the disease, about life in nursing homes, and the humanity of people. Words have never resonated so deeply. I laughed. I cried. I wrote the author - that is how big of an impact this book had made.

Below you will find thd the book description, Kessler's website and a link to Amazon.



Dancing with RoseOne journalist’s riveting – and surprisingly hopeful – in-the-trenches look at Alzheimer’sLike many loved ones of Alzheimer’s sufferers, Lauren Kessler was devastated by the ravaging disease that seemed to turn her mother into another person before claiming her life. To better understand the confounding aspects of living with a condition that afflicts four and a half million people a year, Kessler, an accomplished journalist, enlists as a bottom-rung caregiver at a residential Alzheimer’s facility she calls Maplewood. Life inside Maplewood is exhausting and humbling, a microenvironment built upon the intense relationships between two groups of marginalized people: the victims of Alzheimer’s and the underpaid, overworked employees who care for them. It is their charge to feed, clothe, bathe, and tend to the needs of dozens of residents, many of whom have only the most tenuous connection to the world around them. But what surprises Kessler more than the disability and the backbreaking work is the grace, humor, and unexpected humanity that are alive and well at Maplewood. The residents in Kessler’s care give a human face to what has always been considered a dehumanizing condition, and transform her notions about the disease and “end-of-life” in general. Among those in her care are Hayes, a dapper 91-year-old, a formerly stoic man who has become, under the influence of Alzheimer’s, talkative and witty with the timing of a Borscht Belt comedian; Marianne, a sophisticated, educated career woman who lives in a well developed, completely logical, entirely fictional world of her own creation; Rose, deeply demented, seemingly unreachable; and Eloise, gentle and self-effacing during the day, contentious and needy at night, who becomes Kessler’s adopted mother. Dancing with Rose is forceful and funny, clear-eyed and compelling. An illuminating and intriguing narrative about the relationships and realities of elder care, Kessler’s immersion offers a new, optimistic view on what Alzheimer’s has to teach us, and is a much-needed tonic for the many people faced with providing care for someone they love.

www.laurenkessler.com/

http://www.amazon.com/gp/product/0670038598?ie=UTF8&tag=minervaclarks-20&linkCode=as2&camp=1789&creative=9325&creativeASIN=0670038598

Hands On

I have been trying to make it to San Antonio at least three times a week, focusing on meal times. She will eat more is you are there with her. It has been a very hands on experience, as I have gotten to know the nurses, doctors and other residents well. I feel Salado Creek is a good family setting, for both her and I - any concerns are immmediately addressed, which always adds greater comfort and all that you can ask.

I talked to the doctor about what we can do to help her keep her busy throughout the day. She is very focused on different fabrics and touches. The doctor suggested a special baby blanket, which has different fabrics and colors which will help to entertain her. Oh, and slinkys! Human touch is always great, so I try to get there and rub lotion on her hands and take care of her nails.

I talked to Julie, the Director of Nursing today inquiring about the same - different perspectives are always helpful. We both believed physical therapy would help and I was under the impression she had been taking it. Double checking she has not been evaluated since the first few days she was there - which was incredibly different with the dibilitating drug Abilify she was on. Therefore, she will now be taking Physical Therapy five times a week - It is aggressive but will help to keep her moving and strong.

I also asked about the fact that she is pocketing food and will not swallow. She has doing this since about March, but each time I inquired about it at the last two homes - I was told there was nothing they could do. But the more I ask at Salado Creek, the more response I get. They will work with Speech Therapy to not only help to get her speaking again but to swallow too.

Today was not a good day though. There is normally a flash of recognition when I come to see her, if not for just a few minutes. But today there was none. Those days are difficult but we overcome. Because tommorrow is a new day and yet another day of possible clarity.

On Friday when I went for dinner, I said "How are you today!?" She said her infamous line, "Alledgedly awake". The only two words she said for two hours - but she is still there. She is more alert and awake than she has been in a month - so for that we are grateful.

Picture Time

I have been weary of putting pictures up of my mother, because I want her remembered for the beautiful woman you remeber. But I know that many of you are unable to make the trek to Texas to see her and are interested to see how she is. And because I want to make this blog all inclusive and making you feel as though you are making the steps with us, as if you were making the daily journey.

As you have been here along the way, you know that this disease has been a fast progressed one. She is unrecognizable from even one short year. And surely does not look the ripe young age of 60.


Taken in her room at Salado Creek.


I am trying to get her to do more hands on things. This small toy - a childrens etchasketch, helps to keep her mind strong and hands busy. But it is here you can see the confusion is evident.

Medication Update

Things here are as well as well can be. Mom was taking a medication called Abilify - to slow her down and it did just that. So much so, that she was catatonic. John and Pat saw her one day and knew immediately she was overmedicated. Between communication with the doctors and nurses, we were able to get her off alot of the antideppressants she had been taking. This has helped to wake her up a bit more and make her aware of her surroundings. It will take a few weeks to truly cleanse her body of the effects of this certain medicine, used for those with bipolar disorder.

Her nurse, Michelle, said that most mornings she is up and out of bed trying to put her clothes when she walks in to check on her. This is good news, of course. But she is still relegated to a wheel chair, as she has lost alot of muscle capacity.

I am trying to get down to San Antonio to have lunch and dinner with her a few times a week. She is still not eating very well but if someone sits with her, she will attempt to eat more.

Theres not much to report but its something :)

The Savages

I went to see the movie Evening last week and ran across the movie below. Its a little insight to what the past year has been - in a comedic black comedy that hits a little close to home. If you have a chance check it out.