Nov 30, 2009

Unintentional absence

I have been unintentionally absent for a couple days. We did move into our "house sitting" house, down out of the high country and accompanying snow. I could not get online here and thought it was because of lack of tech skill, but it turns out it was a problem here at the house. So, I am experiencing my first wireless experience.

The move was stressful. A lot of work for me and when I am stressed that seems to bring the very worst out in Dwane. A big responsibility to hold my emotions so well that he is always in equilibrium. He is still acclimating, but then so am I. -- not as much, of course, but getting used to new things. Lovely and spacious home, but all different. That is both good and bad. Since any change, whether good or bad, does cause stress. Well, my intention is to have fun with this.

Nov 27, 2009

Better lives

Picasso once said, "Everything you can imagine is real." Perhaps he was speaking of artistic creations, and perhaps he was speaking of more than that. There are considerable streams of thought which subscribe to our being able to have better lives if we but imagine them and are quietly optimistic about having them. I do know that my day goes better when I expect it to. There is truth in the old adage about what side of the bed you get up on. In living with a terminal illness, I find it confusing to imagine a better life. Would that be a life without illness, or is that the best life possible with the illness? Confusing.

Today we move to our "house sitting" house down out of the high country. It will be interesting to see how Dwane acclimates. I will be observing because in a week I will be gone for a few days to a conference. I had arranged for someone to stay nights with Dwane, and he has had a tizzy fit about that. I want to be able to go, relax and not worry about his safety.

Nov 26, 2009


"As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them." John Fitzgerald Kennedy

Today America celebrates Thanksgiving. A good day to remember what we have to be thankful for and to express that gratitude. The Wall Street Journal helps us out by listing 20 advances for which to be thankful. 27% fewer children died around the world in 2007 prior to their 5th birthday, compared with 1990. Hip fractures in elderly are down nearly 30% in the U.S. and Canada since 1985 for reasons not fully understood. The longer you live, the happier you are likely to be according to research by American Psychological Association.

We have so many things for which to be thankful: good friends, freedom, a sense of meaning to name a few.

Nov 25, 2009


"Teach us love, compassion, and honor . . . That we may heal the earth . . . And heal each other." Ojibwa Prayer

Lovely sentiment. Or is it more than sentiment? Is it possible for us to heal each other with words and actions of compassion? I once heard Deepak Chopra speak of some research being done which demonstrates healing as a result of prayer at some distance. There has been considerable research done on healing prayer. One interesting research project demonstrated that praying for the highest good for someone else was more effective than directed prayer (where we believed we knew what was best for the other person). I try to remember that in living with a terminal illness. Healing can occur on many levels, and perhaps it is not always the physical level which is the most needed. Mystery. I had a dear friend write me a note which reminded me to remember the mystery.

Nov 24, 2009

Helpful tips on talking with a caregiver

I have been living with dementia for over a year now, and I want to give some tips for how to handle this conversation with the person giving the care for someone with dementia or any terminal illness. These suggestions are not so different from the skills taught in my award-winning social skills curriculum.

What to do:
  • When told, say, "I am so sorry." or words to that effect
  • Listen.
  • Do ask, "How is it going?"
  • Do ask, "How is (name of person with illness) doing?"
  • Do ask, "How can I be of support?"

What NOT to do:

  • Do not presume you know what the caregiver is experiencing even if you have lived with a terminal illness yourself.
  • Do not give unsolicited advice.
  • Do not avoid asking how things are going.
  • Do not say nothing if the caregiver says something to you. At least say, "I'm sorry to hear that." or some appropriate comment.
  • If you are unwilling to listen, tell the caregiver. What are you willing to do?
  • Don't presume that every type of dementia offers the same experience. Ask, "What is most difficult for you?" or words to that effect.

Living with dementia is difficult enough on its own without the added burden of people presuming what I am experiencing. Thank you for listening.

Nov 23, 2009

A period of well-being

One of the most notable characteristics of Dementia with Lewy Bodies is the extreme variability in lucidity. Having said that, we have had a period now for several weeks where Dwane is doing much better cognitively. He is sometimes able to use the tv remote to find the game he wants to watch, he does some household chores such as emptying the dishwasher and setting the table while I am preparing dinner, and he even helped by putting stamps on the envelopes the last time I paid bills. He had not helped in any aspect with bill paying for over a year. Sometimes it is hard to remember that this is a terminal illness. Because of the extreme variability in lucidity we had experienced for over a year, I notice I keep waiting for the other shoe to drop. Everything I have read says this good period of functioning cannot continue. I want to enjoy it while it does. He has been on medication for dementia for over one year, so it does not seem that the medication could be helping more just in recent weeks. I had thought he was better because of looking forward to seeing his daughter and family, but his good functioning continues. Inexplicable. The other good periods we have had lasted for a few hours or few days. My intention is to enjoy this period of good functioning.

Nov 22, 2009

Mayo news

In the Mayo Breakthrough Bulletin, just received, they speak of new research they are doing which "chews up" the A-beta (a protein) that forms plaque in the brains of people with Alzheimer's Disease. While Dementia with Lewy Bodies is not the same as Alzheimer's Disease, this is hopeful research for us all. Previously medication has been aimed at stopping the production of these proteins. This new approach is aimed at breaking up the plaque already deposited in the brain. Very exciting. This bulletin is also a plea for money to help with the research. If you would like to help advance this research, send a check to: 2009 Alzheimer's Drive, Department of Development, Mayo Clinic, PO Box 450, Albert Lea, MN 56007-9849.

Nov 21, 2009

More on kindness

Mahatma Gandhi said, "As human beings, our greatness lies not so much in being able to remake the world - that is the myth of the atomic age - as in being able to remake ourselves."

This seems true for me. For several decades the most important intention I have had is to develop to my full potential. That is why I am seeking to find meaning and purpose in living with someone who has dementia. I think the situations we encounter in life are fodder for growth, which makes us either better persons or bitter persons. I also think I have a responsibility for how I treat others. There is the most amazing research well documented in psychology that it only takes one caring adult to have a special interest in a child, for that child to achieve his/her potential -- instead of going the other direction into misbehavior, etc. I don't have the research to support this, but my hunch is that the benefit of this caring attention is not restricted to just children.

Since we learned yesterday the benefits of acts of kindness upon oneself and others, it is certainly worth practicing kindness as a habit, as an opportunity to "remake ourselves".

Nov 20, 2009

Acts of Kindness

"Man did not weave the web of life; he is merely a strand in it. Whatever he does to the web, he does to himself," Chief Seattle. Such wisdom expressed long before the effects of acts of kindness has been proven over and over in research projects.

Author Deb Sandella cites one research project where people are shown movies in which Mother Theresa is ministering to the poor of India. During and after watching such movies, the peoples' immune systems improved. This was true for everyone; even young school boys who acted silly during the movie. There have been many other research projects that show our actions affect others, and that acts of kindness - even if we are not the ones performing the kindness - affect our bodies in positive ways.

On Monday I gave a presentation to school personnel. As part of that presentation I included how to create an environment of tolerance and hope in schools. Acts of kindness demonstrated by the adults in the school do impact the environment and how the students act toward themselves and one another. Research has also demonstrated that a person's self esteem is increased by contributing to and helping others.

Many reasons to practice kindness: When we are kind to others, we also benefit. Perhaps this can give an extra layer of meaning to people who are giving care to someone with a terminal illness.

Nov 19, 2009

Music Therapy

The Wall Street Journal has an article in its November 17, 2009, issue on the effectiveness of music in unlocking memories in people who have Alzheimer's Disease and other memory problems. While I don't think this would be particularly helpful for the type of dementia we are dealing with, Dementia with Lewy Bodies, I wanted to pass it along for others. In studies of the brain the medial prefrontal cortex appears to be the site where music, memories and emotions meet; and this research indicates that this region of the brain is one of the last to atrophy in people with Alzheimer's Disease. This is not true of Dementia with Lewy Bodies, or at least the manifestation of Dwane's dementia, which is in the frontal lobes. But for anyone with the memory difficulties that accompany many forms of dementia, music may help. The article even suggest particular titles, from the Institute for Music and Neurological Function.

"Fever" by Peggy Lee, "Dawn" by Frankie Valli & Four Seasons, "Unforgettable" by Nat King Cole to name a few. The article suggest loading favorite songs, or these songs from their list, onto ipods so that people with memory problems can listen to them. Personalized music therapy for one hour, three times a week, improved scores on cognitive functioning tests by 50%. It is certainly worth investigating. The article can be read online, "A Key for Unlocking Memories" WSJ, 11/17/09.

Nov 18, 2009

Developing oneself

The Beetles' song from the sixties has a line I love. "Nothing you can do, but learn how to be you." From All You Need Is Love. A friend was telling me about someone who, by her description, is excessively controlling. Controlling behavior is common and seems based upon fear of exposing ourselves as we really are. It is a rather natural reaction when someone does not feel safe, but it does not serve to develop intimacy. This line from the Beetles' song puts things into perspective. There really is nothing for us to do in life, except to develop who we are completely. What a journey!

Nov 17, 2009

Enjoying health

A reading this morning focuses on health. Author Deb Sandella says, "Our physical habits, emotional feelings, and spiritual beliefs manifest our health." She goes on to say, "My spirit and body align as one. When they speak, I listen, and when I listen, they thrive." I think there is truth in what she says. I also think that this practice is not infallible. What does one consider when bad things happen to good people? That is such a human mystery that books have been written about it, even with that title. To subscribe completely to the idea that our health is reflective of our own practices can produce guilt. I have had people say to me that there must be something about my karma that I am now living with someone with the terminal illness of dementia. Perhaps. Then it is only a small step to conclude that someone with a terminal illness chooses it. I don't think that anyone dealing with a terminal illness, whether having it or being caregiver, needs the stress and guilt of thinking we caused or chose this.

So, for me I continue to try to align with practices that support good health while not questioning how we got to this condition of dealing with a terminal illness. A friend once reported to me what a health practitioner said about believing we could always be in optimal health. "Well, we all have to die of something." That does seem to be part of the human condition, doesn't it?

Nov 16, 2009


"Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy," - Thich Nhat Hanh

This wise saying is supported by current research. One can change one's emotional status and brain chemistry by smiling. It seems to be that smiling is beneficial for the body and mind; and if one does not feel like smiling but smiles nevertheless, that brings the body into harmony as if one were not "forcing" the smile.

It is another way of knowing that we can control our emotions and our attitudes. I read recently that because of the evidence that laughter is so beneficial, laugh clubs have started up in India. People getting together to laugh. I know for myself that I can be lifted from a more negative mood if I watch a movie that I find funny. Perhaps it is why Shakespeare wisely inserted humor (I've forgotten the correct terminology) even into his tragedies.

Another way of establishing self care: smile, think positive thoughts, be grateful.

Nov 15, 2009

Self Care

It was suggested to me that among the topics that I might present to a coaching group that I consider presenting self care, since it is so important when one is caregiver for a person with a terminal illness. The trip to Italy is an example for me of how important self care is. It took me several days to adjust to being back, to being able to sleep. I attended a lady's spa activity yesterday and the massage showed me how tight I was in my neck and shoulders. I think this is in direct relationship to how vigilant I had to be in making sure Dwane was safe outside our familiar home setting. My daughter, who thankfully insisted on picking us up at the airport - after 24 hours of flying, pointed out to me how much I check on Dwane's safety. Making sure he knows where we are going, making sure he gets out the revolving door, making sure he has all his possessions. This was amplified in Italy. Making sure he was with us, making sure he was on the sidewalk so that he did not get hit by a scooter, making sure he had his umbrella, making sure he understood where we were going, making sure he got on the bus before the door closed. I loved our time in Italy, and it went so well. I do want to acknowledge, however, that it took a lot of attention and energy on my behalf to make it a good/safe experience.

Self care is so important. If we are not taking care of ourselves, we cannot be helpful to others. Massages, good diet, exercise, fun, companionship, finding meaning in life: all are examples of good self care. And attitude: Perhaps that is the most important of all. Looking for the good in all things. As Depak Chopra said, "If you want to transform your karma to a more desirable experience, look for the seed of opportunity within every adversity, and tie that seed of opportunity to your dharma, or purpose in life." That is the basis of my intention in living graciously with the terminal illness of dementia.

Nov 13, 2009

High profile death

Sandra Day O'Connor's husband, John, died November 11, 2009 from Alzheimer's Disease. He was diagnosed with Alzheimer's over twenty years ago, and when the former justice of the Supreme Court of the United States retired in 2005, she cited the need to care for her husband as the reason for her leaving the Bench. Such a long decline for them both. We went to hear Sandra Day O'Connor speak a couple years ago. She was articulate and informative in speaking about the function of the Supreme Court in upholding the Constitution of the United States. We were sitting close enough to see that she also did not appear well physically. She was perspiring and her hands were trembling. Perhaps this was because of a transient illness, but I was also struck by the possibility that it may be because of the huge weight and stress that accompanies caregiving someone with dementia. It reminds me of how important self care is; just as important as the care of the one who is terminally ill.

Nov 12, 2009

Gratitude as a Habit

I had a conversation yesterday with a wise person about the importance of gratitude. Gratitude despite circumstances. There are several schools of thought currently which subscribe to the importance of establishing gratitude as a habit. The current newsletter of Hazelden has gratitude as its focus topic, and it is well accepted that someone recovering from addictions is benefited by having an "attitude of gratitude". When things are going along smoothly, gratitude seems somewhat easy to maintain. But, when faced with something upsetting, gratitude can be a more difficult emotion to attain. Perhaps this is an opportunity for discipline. To maintain an attitude of gratitude despite what outside circumstances appear to be. Yes, good practice when dealing with a terminal illness.

Nov 11, 2009

A Good Trip

We are back from Italy. We accomplished the only real goal and motivation we had which was for Dwane to see his daughter and her family and meet his granddaughter. So, that feels very complete. We had a very good trip. Dwane put forth good effort to be a good travel companion. A fear I had had before going did not materialize: we managed to not lose each other, except very briefly. Still I recognize that it took a lot of energy for me to be constantly vigilant for his safety. It was fabulous eating the local food, making human connections with local people, seeing Michelangelo's David and other wonderful art, going to an Italian opera. The hotel we stayed in was lovely and centrally located, as promised. We could walk any where we needed to go, and my ability to speak Spanish served us well in communicating in Italian. All in all, a really fabulous trip.

Nov 2, 2009


"Happiness never decreases by being shared," Buddha. Yesterday a housing project with family and friends was leavened and lightened by the sharing of wisdom, good will and insight of all. It is amazing what a number of well-intentioned people can accomplish. Alone, one can become discouraged, but by just adding someone with a "can do" attitude who wants to help, makes all the difference. It seems that people either add positively to a situation or contribute negatively, perhaps by default. Long, long ago I made the decision to have as an intention to always contribute to any and all situations in a positive way. That attitude can and does make a difference.

I will be taking a break from writing this blog for almost 2 weeks. I am taking Dwane to Italy so that he can see his daughter and family. I continue to be so grateful that things are going so well here, and I hope the trip is easy, fun, and enjoyable in all aspects.