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

Here's the Way to Grow Old Together

I love this! This is how we should age. It warms my soul to watch this couple. Now I just have to convince my husband to practice a routine of some sort so we can perform together. I'm leaning towards dancing. Enjoy.

http://www.youtube.com/watch?v=RI-l0tK8Ok0

Lesson Learned

Sometimes we find a new outlook in an unexpected place.

I had a recent bout with the drug Topamax, a seizure medicine used to manage migraines in adults. This medication made me completely stupid. The neurologist said “it might cause some mild problems with word finding”. Obviously this doctor had never taken Topamax. In the beginning it felt as if I was living in a fog, it was very difficult to process information. Side effects forced me to adapt and cope, all in hopes that the head pain, the dizziness, nausea, and sickness, would go away if I used the medicine. The worst part was the long lasting result of word finding difficulties. As a speech pathologist I rely on my words. I teach people to talk and give seminars for a living. Seriously, words have to come quickly, flow easily, and nothing less is tolerable. My patients have these symptoms, not me. The meds were in my system for almost 4 months, and then I decided the side effects were too much. I was fortunate to have the luxury of being allowed to make that decision. My patients do not have the ability to stop their symptoms.

I stumbled upon an abundance of insight because of this experience. Even in the midst of my migraine and medication provoked stupor I gained a new understanding for the people I encounter each day. These people have dementia often in early stages, some highly aware of the tribulations they face, others beyond that awareness, but at times, still frustrated with changes in their thinking, slowed cognition, lack of ability to express themselves. For the first time I held a fresh perspective. The embarrassment, the lack of desire to speak, the tendency to avoid specific situations, was a problem I now faced. I love being a presenter, but I dreaded every seminar I had to give, certain there would come a time during the day long event that I would make a joke about my lack of appropriate word retrieval. I am lucky to be able to make these symptoms go away. Just stop taking a pill. Dementia does not forgive so easily. The people I meet, do therapy with, and talk to, tell me that the symptoms are relentless, frustrating, and almost impossible to deal with.

The journey of Topamax allowed for a shift to occur in me. I’ve always believed that dementia was a terrible disease but now I had a small taste, very small, not even comparable, off its manifestations. I did not like it, and could not accept it. A deeper respect for those suffering from dementia lies in me now, and I wonder what life will be like as I age.

Please feel free to comment about your own experiences that occur regarding aging, or other thoughts you may have.

Just a Phone Call Away

Last week I conducted a seminar in Tucson, AZ and had a great conversation with a course participant. This lady spoke with me about some of her greatest concerns caring for her elderly parents. She told me that the mother was in her late 80s and father in his 90s. They live at home and their children assist with their care. The adult children want their parents to have as much independence as possible, consistent with the aging in place movement we are in the midst of.

The lady expressed concern with use of the phone. What comes to mind initially? Large buttons due to eyesight problems, poor hearing interfering with comprehension of the conversation, both possibilities, but neither fit the bill. The main worry was the automated system that we all encounter. Even those of us whose brains are in our prime experience frustration, and at times just want to push 0. We hope that a person, a real live voice will help us with the problem. Think about the tribulations that may complicate the automated system phone task even further. Poor working memory… by the time “push option 7 for billing questions” comes along, the elderly person with memory loss will forget what assistance “option 2” might provide. Then they try to get the operator, instinctively touching the 0 button on the phone, and what do they hear “this is an invalid option, goodbye”, and back to square one.

In our world of evolving technology where paper bills are a thing of the past, customer support provided by a human being becoming obsolete, and the first thing we hear when calling customer service is redirection to a website, we must consider the generation who is not familiar with this system. How about a default option, 0 for operator, required for all customer service centers? Although the companies would have to employ more people increasing their costs, certainly it would be less expensive than providing services for the elderly at home to assist in maintaining personal finances. Perhaps someone could start a customer service company, a call center, and its primary function would be to service the aging population. They could then contract to utility companies and customers over a certain age would receive an alternate number to call, the ones who most need help would now have a better option. I don’t know of a quick fix. I think we have to look at changing the system on this one, but what a difference a simplified version of the complex customer service phone methods could make in the lives of our elderly and their caregivers.