Jan's Story

Last night I check my email to find a note from a person who attended one of my seminars. She referred me to last week's CBS Sunday Morning show, and simply stated that there was a segment I should see that was wonderfully done. I watched this video and was very touched. Barry Petersen when out on a limb, creating a relevant piece that is absolutely worth sharing.

Take a moment, click the link, scroll down, watch the video, and share your thoughts.

What if Jan's story was your family's?

http://www.cbsnews.com/stories/2010/06/20/sunday/main6600364.shtml?tag=cbsnewsTwoColUpperPromoArea

10 Mountains 10 Years

They may not be moving mountains, but pretty close to it…

The Mountains
A small group of ordinary people, “ The Regulars” as they call themselves, are breaking new ground in awareness for Alzheimer’s and Parkinson’s Disease. Enzo Simone and his team of climbers are anything but regular. They are on a quest to summit 10 of the world’s most challenging and amazing mountains. Not only will they conquer the mountains, but also bring a level of unprecedented awareness to 2 horrible diseases afflicting over 92 million families in our country.

The Movie
10 Mountains 10 Years is a documentary feature film by Back Light Productions which chronicles the summit of Kilimanjaro with this group. The climbers make their way up the mountain and along the way receive inspiration, reading letters written by caregivers for those with Alzheimer’s or Parkinson’s. The film intertwines their climbing journey with medicinal accomplishments in fighting these diseases. All proceeds from the film go to medical research and caregiver programs. Check out the trailer. It is phenomenal!!

10 Mountains 10 Years Movie Trailer from Vancan Design Studio on Vimeo.

The Motivation
Optimism and inspiration resonate in Jennifer Yee’s (writer/director/producer) voice when she talks about the movie. She calls it an “underdog journey” which began with her friend’s project of climbing mountains to bring attention to Alzheimer’s and Parkinson’s, and with a “giant leap of faith” became 10 Mountains 10 Years. Their desire for the film is worldwide distribution, but not for the reason you may think. The motivation for staying with the movie for the long haul is according to Yee, “to make a difference with people, so they see there are others out there fighting for them…there is hope when maybe they have lost hope”

A few with a dream CAN make a difference…
Thank you to Back Light Productions and “The Regulars”, keep up the battle.

Reminisce Resurrect

Easter Sunday, brings us to see our elders, a family dinner, baskets, eggs, church, a new dress or a nice suit. Easter sparks many memories for the neurotypical person like one of us. For instance, I can recall the exact shade of pink in the stripes on my dress one Easter, the scratchy knee socks, and the bright sun shining on my face while I posed for Easter photos in the nicely manicured lawn with my cousins. The patient with dementia will not have these memorable details easily accessible. So asking the person with memory and cognitive impairment about their favorite Easter, or what their Easter traditions are may be a great way to begin a conversation, without very fruitful discussion.

What we know about memory is that short term recall is the first to disappear, and then long term recall slips away more slowly. It manifests like this in the early stages…The person with dementia gets up and dressed in their Sunday’s best, the family leaves for church and no slip up yet. They go to service, sing the songs, read the scripture, and then time for family dinner. But this year family dinner is at the granddaughter’s home, and the driver is relying on the one with dementia to give directions, as he is in from another town. Travel there is not so easy, despite many visits prior to this one, wrong turns are made, even pulling into the wrong home, but thankfully noticing another family in the drive. Talking about the sermon this date is impossible, even though the person with dementia was present and participated during the service, no recollection of information so new exists. So, with a lack of interaction regarding current happenings, the family begins to dig back into days past. Reminiscing about the year that one lost egg from the hunt wasn’t found for a week, and only did the stench of the decorated egg lead them to find it. The person with dementia may remember this humorous event. Perhaps they break out the photo album. The senior with memory loss sees a photo of their children 20 years ago, outside the church after Easter, and with a quick comment from the daughter regarding the fun had that day, comments flow easily and memories though long lost begin surfacing.
Now how can we make this Easter, and everyday special? How do we help preserve memories and interactions in life while dementia is trying to take those skills away? Stick with tradition, and keep the events of the holiday as recognizable as possible. People with dementia will remember the familiar, and function optimally when provided with stimulation that is not constantly changing. Memory loss will often not attack the prayers that were repeated throughout life, the common routine of cooking the same recipe for the Easter ham will be intact, and even knowledge of the normal attire, or typical events of the day are tools to use to help the person with dementia live life as normally as possible. When it comes to remembering and conversing, use items and pictures from the past to elicit recall, and keep the demand simple. Allow the senior to recall what they easily can and keep the conversation flowing by feeding in missing details. Familiar smells, tastes, places, routines, and providing stimulus with emotional content will retrieve memories from places hidden.

Not only this Easter, or on special holidays, but everyday, we can draw from this knowledge to help those we love with memory loss have meaningful interactions. Keep routine intact, use familiar ritual, and pull in concrete items to stimulate memories and conversation. Fill the day with success driven interactions. We can tap into emotions, feelings of love, joy, and peace to promote pleasant contact with the senior suffering from dementia, and through these moments preserve quality of life in the face of a terrible disease.

Happy Easter!

End of Life: So Many Questions

For years I have known the devastation that comes about when making decisions regarding death and planning for end of life care. When do you opt for treatment? When is it time to just live the rest of your life? When do we as clinicians, nurses, doctors, stop fighting to fix the problem, and resolve to lend a hand for finding peace? Throughout personal experience, encounters with families, and interactions with dying patients I have come to realize that there is no consistency in ensuring that a dying person’s wishes are conveyed and carried out. Extreme variability exists in discussions about dying and one’s end of life wishes. Talk about death is complicated, dealing with death is difficult, and when you add in factors such as multiple medical conditions that take away communication, thinking, or weaken the patient to a point of compromise, it becomes essential to start the dialogue long before the disease takes over.


In the last year or so this specific notion of dealing with death has crept into my life time and time again. First in multiple encounters of working with elderly patients with dementia, or some other illness, who did not “have their ducks in a row” so to speak, left families with critical choices on their plate. Many times a person will have laid out the basics, but when critical moments arise it is much more complicated, emotions of family member take over, not wanting to “lose” their loved one, etc. Resuscitate or don’t? Ventilator or none? Feeding tube or pneumonia? So many intricate questions crop up. Also, I have spent time talking with friends and members of my own family who don’t work in the medical field and they have dealt with similar issues. They ask for guidance from medical professionals, but find it lacking. All of these end of life determinations in the midst of an emotionally trying time. Hoping they will know the right thing to do, while keeping with the wishes of their loved one.


Wouldn’t it be nice if we talked about these decisions with the one who really is responsible for making the call long before the time comes?


The following is a guide designed to be used in conjunction with Bill Moyers’ PBS series On Our Own Terms.

http://www.pbs.org/wnet/onourownterms/community/pdf/discussionguide.pdf



Use with the series is beneficial, but the guide alone also serves as an superb resource for topics of conversation, decisions to be considered, suggestions for dealing with death, and even how to make sure our needs are thoroughly document so no confusion arises.


Initiate the conversations and listen intently. Learn how your parents, grandparents, spouses, and patients what to live out their last months and days, and how they want to die. In spite of a distressful event, you won’t be sorry.

Healthcare Reform

No matter which side of the fence you fall on, it is important to attempt to get some unbiased knowledge about just what health reform will mean. So much of what we hear in the media is distorted. With the important issue of obtaining health care for elderly loved ones, our families of all ages, and ourselves, it is absolutely necessary to find some objectivity and review the facts.

http://www.kff.org/

The Kaiser Family Foundation does a nice job of reporting information without inserting opinion. This type of resource is hard to locate regarding a topic which holds so much political charge. KFF also provides updates frequently so you may want to bookmark this site as well.

95 and Counting

We started the conversation talking about specific memories this elderly woman wanted to share. She prefaces our discussion with a statement that, in her mind, sums it up. With a high pitched voice, and rich Appalachian dialect Mary tells me, “Things just don’t come back to you like you’d think they would. Ain’t got much memory. I’ve about forgot it all.” Then she defies all she just said and remembers her story. Detailing life as a young woman, a wife, a mother, a farmer, she talks of days in her life before the nursing home, days before, as she says “my bones started to give out”. This petite elderly lady with long, wavy, barely gray hair holds the information of what life has been like for nearly a century. I am fortunate enough to get a slight glimpse into the mind of a woman who has experienced nearly a 100 years of change, and hear her talk about the transformation and the constant aspects of life over the years.

Mary tells me “I remember the milk cows, sheep, goats, hogs, a team of horses, and things like that. That is what took up my time. That is what I know. I knowed how to plant corn, potatoes, all kinds of little things in the garden. That is what took up your days.” She recalls more in-depth stories of tending her garden, helping her animals, herding them in to shelter when weather turned bad, and staying up into the midnight hours to make sure the baby animals, lambs in particular, were saved from the fate of freezing to death. She tells me of her childhood as an orphan, as her parents died and left 9 children, to “manage the best they could”, when Mary was not yet a teenager. She can’t recall her exact age, but tells me that she was pampered as she was not one of the oldest. Her face and words reveal shock when I tell her that average life expectancy in the United States is 77.7 years. Her family did not live this long and she feels like she is the exception.

Speaking easily of the days of past she recounts events in her life, but tells me that around the time her great-grandchildren came along there “must have been something happened to my mind”. She explains that currently, “It is hard to concentrate and sometimes I get scared because I am confused about where I am.” This happens most often when she wakes up at night, and she is able to “get straightened out” once she fully wakes. She regretfully tells me “If you’ll notice, I can’t tell you anything of benefit.” But what Mary fails to realize is that her presence, her story, the wisdom gained in her years are of benefit to us all.

What I see when talking to Mary is a person whose brain is in very good shape after 95 years of hard work, living, and thinking. She has normal age related memory change. Precise details are decreased, and the particulars of events happening in present day tend to fade more quickly. When I ask her to let me in on the secret to living such a long and fruitful life she explains how she took care of her body, working hard and walking a lot. I learn that they never called it exercise, as activity was just a way of life. I posed a question to Mary that required a bit of thought on her part, as it would for anyone. I wanted to know the best and worst thing about being a woman 95 years of age. The best, she tells me, is being able to “eat all you want because nobody pays attention if you need to trim up”. This statement, coming from the smallest woman I’ve ever met, reveals a great deal about how some components of our belief system and self image, deeply ingrained, carry throughout the span of our lives. The worst thing is a concept she can’t quite put her finger on. She simply states “I’ve lived through it all and there’s not much use to try and sort it all out, I am just here and that matters.”

Mary is very kind, beautiful, and grounded. When speaking of tomorrow she tells me in a quiet voice “The future will take care of itself. I like to be where I am and not waste the day with worrying about tomorrow.” This is how she has lived her 95 years. Her story is intact, the important parts, her ties to the past remain, but today is where she stays.

Cheers to Mary.

Meds and Memory Improvement

A body of evidence exists discussing a positive secondary effect of antidepressant use. Hippocampus cell growth is the result which comes as a byproduct. The hippocampus is a structure within the brain which stores memories systematically. Typically examined in those with long term depression, studies show that with use of antidepressants over extended periods of time, hippocampus cells proliferate and increase in plasticity. If the hippocampus cells are generating, or even if the plasticity is allowing new information to be stored and retrieved, then implications could be profound.

The use of antidepressants can be very beneficial for the elderly and those with dementia, for decreasing depression, but perhaps there is an additional benefit. Wouldn’t it be amazing if we could kills two birds with one stone, or at least slow down the migrating flight of memory loss throughout the fragile brains of those with dementia, Alzheimer’s, or normal age related memory impairment.

Now I have to say that doctors do not prescribe antidepressants for this purpose, and research is virtually nonexistent in hippocampus volume increase with the population whose diagnosis is that of a memory disease such as Alzheimer’s. What’s available is the promise of clinical trials related to this concept. Here is a link to one such trial, and this site will provide a tool to find other trials as well that may benefit our patients and loved ones with dementia.
http://clinicaltrials.gov/ct2/show/NCT00702780?term=Alzheimer%27s+and+antidepressant&rank=12

More than a clinical trial, the promise or hope that perhaps a treatment we use for one symptom, depression, will change the brain with memory loss in a positive way may provide solace in the face of a very challenging disease.

Photo By: Tom Varco