Apr 30, 2010

Ways of behaving

"We either makes ourselves miserable, or we make ourselves strong. The amount of work is the same," Carlos Castaneda.

I have said for a long time that experiences of life either make us better or bitter, very similar to what Castaneda says above. We recently had the opportunity to hear Mike Krzyzewski, coach of Duke University basketball team, speak. Inspiring. He said that the way he brings teams, such as the U.S. Olympic team, together is to have them create standards, and he defined standards as the way they agreed to act all the time. These standards included: never being late, being respectful of opponents, preparing well, being poised, covering each other's backs, etc. What a lovely idea. We can create standards in our families: ways we agree we will always act toward each other. What would those be for you? For me, they would include: respectful and direct communication, honesty, kindness, fun, collaboration, working together, respecting each other's space/possessions, respecting life and opportunities.

Apr 29, 2010

Focus on today

"I'm not afraid of death. I just don't want to be there when it happens," Woody Allen.

I finished the book, Still Alice, by Lisa Genova. The portrayal in the book helps with the understanding of what is going on in the progression of dementia, especially that of early onset Alzheimer's Disease. It was a hard read from the perspective of the reminder of the wrenching grief for the caregiver and for person cared for. It was also a reminder of how people with this disorder are still shunned by our society; something we have experienced. People with cancer and other diseases are often surrounded by support; while people with dementia are avoided. As quoted from the book, "Facing her meant facing her mental frailty and the unavoidable thought that, in the blink of an eye, it could happen to them."

So, the book helps a caregiver see the disease through the eyes of the person who has it, but it is also full of sobering reminders. I do best with this disease by focusing on what is going right and how it is today. For me to look very far into the future is far too distressing. That does not mean, of course, not to plan for the future.

Apr 28, 2010

Opportunity for insight

"The question is not if we can get through this life without failure, disappointment, and rejection--because we can't. The real question is: How will we respond?", Rabbi Harold Kushner.

A dear friend gave me the book, Still Alice, by Lisa Genova. Although fiction, it is well researched to give the perspective of a person developing dementia. It depicts a person who is well aware of her cognitive decline, which does not fit our situation, but it is helpful material. It is insightful to read what may be occurring within the mind and the feelings of the person for whom we provide care. I was struck by a paragraph in the foreword:

"Even then, more than a year earlier, there were neurons in her head, not too far from her ears, that were being strangled to death, too quietly for her to hear them,,,,or to warn her of what was happening before they died."

The book is an opportunity to catch a glimpse of perhaps what is happening as a person develops dementia. And, catching this glimpse can increase our understanding and our empathy. We may not be able to turn around the destruction that has been set in motion in the brain, but we most assuredly can control our response and the quality of life that results for us and for the person for whom we provide care.

Apr 27, 2010


"It is impossible to love God and not our fellow man," Joel Goldsmith.

I believe that is true. It is impossible to love God and/or be religious or spiritual, while also being unkind to others. It is appalling the atrocities committed in the name of a religion, it is also appalling the unkindnesses inflicted within families. During the many years that I worked with individuals who had intellectual disabilities, I worked to empower them to be able to stand up for themselves, as they were easy victims of bullies. So, too, do we have an opportunity to help people with dementia defend themselves against unkindness, intolerance, and pressure to do what someone else wants.

A current mental health concept is to choose our conversations. Let us help the people for whom we provide care be engaged in conversations that support them, uphold them and add dignity to their lives, while avoiding conversations meant to denigrate. Unfortunately, it seems there may always be people who use bullying tactics with othrs, but we have an obligation to not allow it. It is a disservice to everyone to allow bullying and disrespectful behavior.

Apr 26, 2010


"Is the universe a friendly place?" Einstein once said this was the most important question we can ask.

In the book, Stones into Schools by Greg Mortenson, I was touched by the women's vocational centers that Wakil organized in Aghanistan. Originally meant to teach women to teach each other to weave and do other domestic crafts, they turned into centers where older women could learn to read and write Dari, Pashto, Arabic and English. The first women attending these classes told their friends, who told their friends, and soon there were long lists of applicants. And the instruction expanded into nutrition, diet, disease prevention, learning how to type, count money, and use the mobile phone. What a lovely example of people helping other people by empowering them with accurate information.

That is what I want with this blog: to provide accurate information that serves as support for those of us who are providing care to someone with dementia. Together we can support each other. It seems people and systems function best when they are supporting each other. I was saddened to read in the Wall Street Journal (4/23/10) that one of the reasons Bill Gate's program to eliminate polio is struggling is that religious extremists are telling Nigerians that polio vaccines sterilize Muslim girls.

Information can be accurate and used to support the life and progress of us all; or it can be misinformation or misused to create fear and stagnation.

Let's choose to empower ourselves and each other by sharing reliable information.

Apr 25, 2010

Dire Predictions

"I always stress the importance of self-care to the caregivers I encounter. I have seen reports that spousal caregivers will often die before the person with Alzheimer's disease...," Angela Lunde, Mayo Clinic's Alzheimer's Newsletter (under Mayo Clinic Health Information).

Yikes! Grim statistics that we must avoid. And how do we do that? Since these are the statistics, it may very well be necessary that we blaze our own trail;; a way we have never experienced or seen. We can find good information, such as the Mayo newsletter. They suggest we: accept help from others, don't give in to feeling guilty, get informed about what we are dealing with, join support groups, stay connected with people who care about us, commit to staying healthy, and see our doctor for our own health maintenance.

Implied here, but not stated, is our attitude. We can control our attitude, and it is important that we not succumb to the "victim" role. Perhaps looking at our intentions for choosing to be caregivers is helpful; and, yes, I think we need to decide if we chose this or if it chose us. Regardless, conscious control of our attitude is supportive of good mental and physical health.

Apr 22, 2010

Education versus bombs

"If you teach a boy, you educate an individual; but if you teach a girl, you educate a community," African proverb.

"No other factor even comes close to matching the cascade of positive changes triggered by teaching a single girl how to read and write," Greg Mortenson.

A very interesting read, Greg Mortenson's new book, Stones into Schools. He has as of 2009 created 131 schools in the most remote regions of Pakistan and Afghanistan serving more than 58,000 students, mostly girls. Astounding in any region, but especially in a region in which females may need community permission to attend school. The author believes that by educating females, terrorism will be lessened, as males often seek their mother's permission before joining a military jihad.

The book is a worthwhile read and one may even be inspired to contribute financially to their efforts. $1.00 a month pays for one child's education in Pakistan or Afghanistan, a penny buys a pencil, and a teacher's salary averages $1.50 a day. For more information: www.ikat.org

And why am I writing about a book to read? Because according to the Mayo Caregiver Newsletter, spouses who provide care to their spouses with dementia are at a very high risk for health problems themselves. We must find ways for self care, and reading can be one way we meet our own needs. Good literature can also be inspiring and can help us keep our own challenges in perspective.

Optimism is life enhancing

"I can't change the direction of the wind, but I can adjust my sails to always reach my destination," Jimmy Dean.

ABC news covered research from the Science of Centarians. The most important characteristic of people who are alive, fully functioning and healthy at 100 years and older is: optimism. That makes sense. They featured a delightful woman who is 101 years old. She still plays the piano at a restaurant for 2 hours in an evening. She said that every morning she wakes up she is grateful to be alive and putting her feet on the floor. Has she had a problem-free life? No. Her husband and two children have preceded her in death. That could be fodder enough for bitterness if one chose to respond in anger and resistance.

What if it is really just a habit, whether one sees the positive or the negative in one's life? We all have both. Which more often catches your attention and which do you spend mental energy mulling? A habit which has served me well is to look for what is right in my life. It is worth considering.

Earth Day

Today we celebrate our 40th Earth Day, a day set aside to consider how we as a species are impacting the planet on which we live. News media is covering the advances we have made in protecting our environment, and the areas still endangered. Just in the area of endangered species: the bald eagle has made a recovery; while the dusky seaside sparrow is believed extinct.

What does Earth Day have to do with living graciously with dementia? It seems to me that the extent of respect we extend to our living environments can be reflective of the respect we extend to our fellow humans. And that respect must start in and flourish in the home. It is important to be respectful to the cashier and in other passing interactions, but what is vitally important is to be respectful in one own's family. Respectful interactions is a standard I highly value.

Respectful interaction is important in living with dementia, and it pays off. We are enjoying a period of tenderness and lucidity. It seems that Dwane is more peaceful, even with some externally-caused consternation. His humor is a delight. He faces life with equanimity and grace. Lovely. One of the good things about this type of dementia is the periods when he is alert and present. Such gifts, and I am so grateful.

Apr 21, 2010


"Man's inhumanity to man makes countless thousands mourn," Robert Burns. Today with our inclusive language we might more accurately say: human's inhumanity to other humans makes countless thousands mourn, as women are as guilty of unkindness as men, and yet women can be so healing too. Of Greg Mortenson's new book, "Stones into Schools", he says that the key to peace is in educating our girls. What hope! Tom Brokaw says of Mortenson that he is clearly indication of the positive difference one person can make.

I am of the firm belief that we each make a difference, and it is within our choice whether it is a positive or negative difference. Which one do you intend to make?

Last night we re-watched the movie, Diary of Anne Frank. The story is, of course, familiar and still horrific. Watching the eight people in the attic interact and live in fear for over two years. Amazing. It was of interest to me this time to watch the portrayed interaction of the people. Adversity can bring out the best and the least in people. There were the courageous people who hid the Jew and those who obtained their food. There was also the person who stole of the food intended to feed them all. There were those who fought and screamed, and those who maintained equanimity.

The movie portrays a very dramatic example of adversity which, thankfully, most of us will never face. But we each have examples of adversity visit our lives. Daily we have the opportunity to face our adversities with courage and good will toward all. Or we can choose to be part of the problem, instead of part of the solutions. Living with dementia is a type of adversity. We can choose how we want to respond.

Apr 20, 2010

Unsolicited advice

"Your opinion of me is none of my business," Richard Kiefer is who I have heard say this, but he may not be the originator.

It is amazing that some people believe they have the right to suggest and/or criticize what others do. I have observed that the people most likely to give unwanted advice are those with the least expertise. People with the credentials to diagnose mental disorders are less likely to do so lightly than some in the mainstream populace. Perhaps it is that with the training also comes the sense of responsibility of honoring another's dignity. So what do we do about the inevitable advice and criticism we as caregivers receive from others? Perhaps it helps to recognize the moral or spiritual development of the person who judges and criticizes others. Perhaps that can enable compassion.

If this blog is not helpful to you, I do have some advice; stop reading it.

Apr 19, 2010


The advocacy for certain supplements often comes and goes; just think of how vitamin E has fallen in favor. But I keep reading good things about turmeric, the curry spice, and how it may protect against dementia. I have not gone out and bought a supplement, but I am cooking more using turmeric. Vitamin D, also, is receiving more notice, with some medical people feeling that anyone living in the northern hemisphere might be lacking therapeutic Vitamin D levels. Recent articles have called it the "wonder" vitamin. I was very surprised when my doctor checked my vitamin D levels and I was very low. I am outside in my exercise regimen every day (our skin makes vitamin D from sunlight, but less efficiently as we get older), and still, I was very low. If in doubt, a person could have their vitamin D levels checked. Doctors often recommend that if a person is going to take any supplement to make sure that it is a brand with the US Pharmacolopeia label, which indicates it has been tested for accuracy, safety and effectiveness.

Apr 18, 2010


In a doctor's column (Dr. Rick Holm) yesterday he states that Parkinson's may be caused by injury to the brain. Although the cause is not definitively known, Dr. Holm states that there is evidence dating from the l980's that Parkinson's may be caused by trauma to the brain from either blows to the head or environmental toxins, proven ones are manganese dust, carbon disulfide, etc. When an alternative health practitioner recommended Dwane drink 2 ounces every day of holy tea for removal of toxins(Dr. Miller's Holy Tea made from holy thistle, persimmon leaves, malva leaves, marshmallow leaves and blessed thistle), I was skeptical. But in light of having read that Parkinson's (a component of Dwane's diagnosis) can be caused by toxins affecting the brain, I am more optimistic. It is certainly worth a try. Harmless ingredients, I would think, and possibly very beneficial effect. Dwane did supplement his earnings for years by painting in the summers. Gives me pause to consider the possibility of his having been exposed to toxins that caused injury to his brain. We only have to look at Muhammad Ali to believe that trauma can affect the brain and subsequent muscle control.

Apr 17, 2010

Is it dementia?

The Alzheimer's Association (877 474 8259) has published 10 signs of dementia, which look good and can be applied to other forms of dementia. They are:
1. Memory changes that disrupt daily life
2. Challenges in planning and solving problems
3. Difficulty completing familiar tasks
4. Confusion with time and place
5. Trouble understanding visual images and spatial relationships
6. New problems with words in speaking or writing
7. Misplacing things and losing the ability to retrace steps
8. Decreased or poor judgment
9. Withdrawal from work or social activities
10. Changes in mood or personality

I am often asked, "how do I know if it is dementia?". These are very good guidelines.

Apr 16, 2010

Melatonin revisited

I want to revisit melatonin, as I was again in conversation with people yesterday who had not heard of it as a defense against REM (rapid eye movement) sleep disorder. REM is an inherent characteristic of Dementia with Lewy Bodies. It is a condition in which the person acts out their dreams. Dangerous for both the person with dementia and anyone sleeping with them. A neurologist at the sleep clinic at Mayo initiated melatonin for Dwane to prevent the REM incidents. It has worked remarkably well. The regimen was to take 1 3-mg melatonin a night for one week and see if that eliminated the acting out; if not, take 2 3-mg melatonin for one week. Repeating this until one could get up to a total of 4 3-mg melatonin pills an evening. It has not completely eliminated the incidents of acting out of dreams, but it has helped dramatically.

Apr 15, 2010

Settling in

We spent all day yesterday settling back in at home. Dwane was helpful. It is beginning to feel like home, less cluttered with boxes. A friend asked me yesterday how Dwane was, and I found myself saying that he seems better cognitively than he was one year ago, but physically more deteriorated. The medications, Aricept and Namenda, have really given us a second chance with his cognitive skills. He is much better in many ways than he was 1 to 1 1/2 years ago. When we went on the cruise and he was lost for 45 minutes on the ship, that is a good barometer for me to compare with our most recent trip. Part of the difference is that Dwane accepts he has been given this diagnosis and has some limitations. That is why it is so important to have a good neuoropsychological evaluation --- to help the person with dementia see their emerging difficulties and to know how to address them while drawing upon their strengths. The field of medication has been helpful. I wish they could do more.

Apr 14, 2010


"1 in 3 Americans knows someone with Alzheimer's disease," Mayo Clinic.

Sobering. Is this like autism in that it is getting more prevalent? It seems to me that is true. When we debated as psychologists whether autism was more prevalent or were we just better at diagnosing it, it seemed clear to me that perhaps both were true. That seems accurate for dementia too. I currently know more people with some form of dementia than I did during my entire childhood. A nephew suggested that it is because we are living longer, but my adult relatives lived to ripe old ages, well into their 80's, without any form of dementia. So, that does not seem to be the reason for the increase either. Perhaps with so many people experiencing some type of dementia the research will be better funded. We, as individuals, can help fund research we believe will help.

Apr 13, 2010


"Reading is not simply an intellectual pursuit but an emotional and spiritual one," Anna Quindlen.

Our love for reading is something Dwane and I have in common, and I am grateful that he can again read with ease with his new prism eyeglasses. Amazing what doctors can do to make life better. On our trip Dwane was able to help navigate by reading the maps we had along. He was usually able to tell about where we were and sometimes to help plan where we might stop for the night. It was a way he could feel he was co-author of our trip. Playing to the strengths one has left is a way to lend dignity to their experience.

Apr 12, 2010

All is well

"Where I am, God is and all is well," Ernest Holmes.

I am still basking in the joy of being home. Dwane too. He is experiencing some confusion, but then, so am I. Where is that utensil, etc.? We spent yesterday getting settled back in here. My daughter and her husband had come to ensure we could get in (there is still snow here, believe it or not) and had reset the clocks to daylight savings time and left flower arrangements. How very welcoming. It was such a good trip, and I treasured reconnecting with my son and his family and being part of celebrating his contributions in the work from which he is exiting. I loved the energy of NYC and the Metropolitan Museum of Art, the fun places to eat, and the broadway play. And I love the serenity here. The only sound when I went out on my deck this morning was of the creek. It is just lovely here. It feeds my soul.

Apr 11, 2010


After driving over 4000 miles, we are home. I feel like Dorothy from the Wizard of Oz, "there is no place like home, there is no place like home." It is so good to be home. I do not remember ever a trip within this country from which I am so grateful to be returned home. I think it is because we have really been gone 4 1/2 months, not just the 2 weeks we traveled. It was a great trip, trouble free, and full of interesting things to see and people to visit. A very good trip, and it is so good to be home.

Apr 10, 2010

Nearly home

We have traveled eight states in the past three days, and are nearly home. Travel is wonderful, expansive; but also tiring. The crowds in NYC were amazing. People were courteous and helpful, but so many, many people. It feels more at home to be where we can see the horizon and the vista for many miles. Tomorrow we will really be home. Dwane has handled the travel very well for the most part. The usual complaints about his stomach and some irritability/belligerence, but mostly good natured. He is such a wealth of information about history. He is still talking about Sagamore. For those of you who are not historians, as I am not, Sagamore is located on what is still called the gold coast: The area covered in the Great Gatsby. It is a large house with a lot of Roosevelt's possessions. Theodore Roosevelt's summer home, set in a lovely setting on the northwestern section of Long Island.

Apr 9, 2010


Dwane and I both loved the broadway play, Memphis. It is a story of the birthing of rock and roll. It depicts the harshness of the racial intolerance, and also suggests some of the softening of racial tensions in America. Then, on to Sagamore, which was the fulfillment of one of Dwane's dreams. Very impressive, and he loved it. Our gps routed us through SoHo, so now I have actually driven in Manhattan. Whew! Now to home. A good trip, and proof we can still travel.

Apr 6, 2010


Today Sag Harbor and the Hamptons. Tommorow Manhattan. We are staying in a quiet area beside a nature reserve. When I walked this morning, I saw nesting osprey and a pair of swan. Lovely, quiet on the beach beside the water. Yesterday we saw a man actively oyster harvesting and were able to talk with him after. Quite a business. He said he got 650 oysters in about 2 hours, and that was less than usual. It is good to see the oyster market being revived. Apparently the oysters fell into the same demise as much of the fishing industry, and is now actively being revived. Thursday, after seeing Sagamore, home we head. It has been a lot of togetherness, but overall good.

Apr 4, 2010


"Communication is to relationships what breathing is to life,"Virginia Satir.

One of the areas of supp port I must create for myself is in the area of communication. I love to communicate, deeply, stimulating, intimately, interestingly. It is one of the areas in which Dwane is most compromised. He can still be witty and fun, but only self initiated. He has lost the ability to participate in the give and take of true communication. An example: Yesterday I was wondering conversationally if we had crossed a state line and asked, "Have we crossed the state line?" He responded, "New Jersey is next to New York." Huh??!?! It is interesting how his mind picks up the general topic, but not the specificities.

True conversation is an art that eludes most people. Most people engage in soliloquies, not conversation. I love the conversation I have with my own two children. Witty, respectful, intelligent, interesting and very 'give and take'. True conversation provides equal time for all parties to talk, and it provides the psychological space for allowing for differences in opinion, without attempt to convince. It is a delicate dance, and it is a delight.

I read research recently which said that the children of articulate mothers, who encouraged conversation with their babies, had appreciably higher IQ's when tested at age 3. Of all the gifts of good foundation I gave my children: good nutrition, strong values and character, finding meaning and purpose in life, giving back to one's country/universe, being efficient and responsible: the one I may find the most delight in is my conscious investment in the development of their verbal skills, and thus their intelligence. A memory of my son is an example of this. A friend was astonished when at age 3 my son told her 6-year old son, "If you don't leave me alone, I will have you ostracized." My son and daughter have such good mastery of gracious and intelligent verbal communication.

It is fun to reap the rewards of that investment in conversation with them. A delight for me in being with them for the past few days was in listening to their laughter and enjoyment of each other. It is heartwarming for me to see how much they have in common of the important areas of values and skills.

Apr 3, 2010


It was a delight to be with my son and family, and today we travel on. Dwane has done remarkably well. We break up the driving days for me. I am so grateful to my dear friend who introduced me to my gps. It makes travel still possible. Travel is something that Dwane and I have always enjoyed, and this way we still can. In living with dementia, it is so important to find those tools, resources and people that can support us. A blessed Easter/Passover season to us all.

Apr 2, 2010


The day of celebration of my son's professional transition was yesterday, and it went very well. It is such a gift as a mother to get a glimpse into the professional lives of one's children. I have the very good fortune to do some work with my daughter, so I am well aware of her accomplishments and the high regard others have for her. And yesterday was a time for me to see that with my son. His extensive list of accomplishments, the high regard his colleagues have for him, his delightful humor. What a fine day. I wish the very best for him and his family. We will rest here another day and then head on to the coast.