End of decade

The end of a year is traditionally a time to take stock, to make plans for the upcoming year. Perhaps this is even more true with the end of a decade. Television has been filled with the fears of a decade ago about all the computer failures, which, of course, did not come to pass. I am not sorry to have 2009 end. A very difficult year. It started not only with Dwane's recovery from total knee replacement, but with my concern for his cognitive functioning, which the surgery had accelerated. (This is apparently true of Dementia with Lewy Bodies.) And yet, 2009 did bring us answers, and our family physician did listen to my concerns, started the medication, and referred us to Mayo. God bless him!!! 2009 has also brought us more equilibrium with this disease process. Dwane is better than he was one year ago.

There is much to be grateful for.

"I rejoice in life for its own sake," George Bernard Shaw. Good advice for me.

Decline

On Christmas Eve Dwane was not feeling well, said he felt his brain was being pulled back into his skull, went down for a nap for some time. Since then, he is not doing as well in his functioning. Trouble with using the phone again, left a burner turned on at the stove, lots of trouble with the tv remote, more agitated and disagreeable. After weeks and weeks of improved functioning, for which I am so grateful, we are obviously in a decline again.

Perspective

"Know that you are in command of your situation at all times," Rasha.

Sometimes it does not feel like one is in control of what is going on around us, and I like what Viktor Frankl acknowledged about that. He was not always able to be in control of his situation, living in a concentration camp, but he came to the awareness that he could always control his attitude. I agree. Although not always easy, one can always choose how to respond.

I try to encourage Dwane to do the things that he is able to do. Yesterday, he was calling in for refills on his medication. He tried three times and said that three times they hung up on him. I took the phone and called and discovered that there was something wrong with our phone; the person answering at the pharmacy was unable to hear me. Dwane's first response when he was not able to get through was to blame. That is always his first response: to blame the instrument or the other person. Has it always been like this, or is this part of his dementia? I think both are true. It is his tendency, and it is increasing. It is part of what prevents him from solving problems; his inability to look at his own part in the malfunction. Interesting.

Compassion

"Compassion is not religious business, it is human business, it is not luxury, it is essential for our own peace and mental stability, it is essential for human survival," The Dalai Lama.

Well, that is worded strongly. Compassion is essential for human survival. That may well be true. We can all cite examples in human history of the atrocities that have occurred in the absence of compassion. There was a time when people were encouraged to have empathy, not compassion, as compassion was interpreted as pity. Webster's Unabridged Dictionary defines compassion as "suffering with another, sorrow for the distress of another with the desire to help." Whereas, empathy is defined as, "the projection of one's own personality into the personality of another in order to understand him better, intellectual identification of oneself with another." Perhaps the world is better fwhen both compassion and empathy are practiced, although I really like the "desire to help" that accompanies the compassion definition.

Compassion is what I strive for with living with dementia. When people pressure me to put Dwane into assisted living, I consider: what is best for him and for myself? That is the best I can do.

Today

Today our company leaves. My daughter and her family have been here for Christmas and longer than they planned because of the blizzard and road closures. I have loved it!! This has been one of my best Christmases yet. All is well here. My daughter tells me she is concerned about my cognitive processes, which she thinks indicates the level of stress I am under. hmmmm. I guess I will initiate some practices to support my equanimity. Life is good.

Family Time

We have spent time with family for the past few days, and it has gone better than for a long time. I think that is because everyone is striving to be gracious. Bad weather here, but we are safe and all is well. Dwane has not seemed as good cognitively for about a week; physical symptoms of pulling in his head; but good attitude mostly.

What a blessing: to enjoy the love and company of family and friends, to be able to give and receive love.

God never begot but one son, but the Eternal is forever begetting the only begotten," Meister Eckhart.

How is God appearing in your world? This season seems for many of the major religions a time to turn one's attention toward God as we understand God. This is a time to count the blessings one has. Time for gratitude for family and friends. Time for gratitude for the great gift of life. Blessings to everyone this season and beyond.

Joy

"Joy is our natural state of being. It is the essence of who we are", Cynthia James.

This seems especially important to remember during the holiday season. Change is part of the journey for people on a spiritual path. It is sometimes hard for friends and family to accept the changes they see in us, and it may be hard for us to accept the changes we see in them. As humans we seem to like the status quo; we like to think we can count on someone being the same year after year. But that is antithetical to the spiritual journey. At least for me, the spiritual journey is about changing and developing more and more of the potential I was destined to enjoy. I think it is a spiritual responsibility I have to develop myself as fully as I can.

This holiday season I remember to stand firmly in my natural state of joy, and I will celebrate the changes I see in family and friends, as well as in myself.

Love

"When you are loved, you can do anything in creation," Paulo Coelho. This has actually been demonstrated in research. Considerable research over the past decade or more has shown that it only takes one caring adult to take a special interest in a child in order for that child to develop his/her potential. I think it is true for adults too. It is amazing how different one can feel in the company of someone who loves us unconditionally, versus someone who is criticizing us. Think back to some supervisors you have had; what brought out the best in you?

Long, long ago I put on the refrigerator the words, "The mother sets the atmosphere in the home." I put the words there as a reminder for myself that I was responsible for setting the atmosphere wherever I was, and that my own home was the place I wanted to most show up as loving, practicing kindness and respect. That is still true for me.

Status

I have had two people yesterday and today tell me I am manifesting stress in my body. This is good information for me, as I am determined to handle this journey living with dementia without it damaging me. So, it is perhaps time to revisit how I am handling things. What I have in place: someone to talk to who totally supports me, exercise daily, good eating and sleeping habits, supportive spiritual practices. One thing I can improve is the level of fun in my life. I will be open to other ways to be in this living in a way that honors Dwane and myself.

Forgiveness

"The forgiving state of mind is a magnetic power for attracting good," Catherine Ponder.

Much has been written about forgiveness and the importance it has for freeing a person from pain and resentment. The author, Cynthia James, says that the root Hebrew meaning for forgiveness is "drop it". It is easy to want to hang on to a perceived hurt or disappointment, but there is risk in then allowing that unforgiveness to define who we are. To be unforgiving is to stagnate one's own growth. Some infractions seem easier to forgive than others, but it seems important for one's own freedom to practice forgiveness on all issues. Writer, Gary Renard, even suggests we practice the art of pre-forgiving. Interesting concept. It might be good to apply pre-forgiveness in living with dementia. Things will go awry. Items will be misplaced, remote control units made inoperable. To practice pre-forgiveness might allow us to remain detached and less affected when things go awry.

Communication

"Where can I find a man (human) who has forgotten words so I can have a word with him?", Chuang Tzu 26

What a delightful reminder of several things. The balance of give and take in communication, the willingness to be open to new ideas and words, the gift of listening, the wonderful experience of hearing and being heard.

That continues to be one of the frustrations for me living with someone who has dementia. The extreme difficulty communicating. A dear friend who worked in geriatrics once said that she did not think people changed as they got older, they just got more of whatever they had always been. I think that is true for dementia too. Another friend told me I could expect Dwane to become more gentle, loving, peaceful. It is dangerous to predict how dementia will unfold in any individual, although there certainly are some bench marks common to many types of dementia. Communicating has never been a strength for Dwane, and it is increasingly difficult. Difficulty tracking the conversational topic, difficulty in retrieving the words he wants to say. Since I love easy, intimate,stimulating conversation, the absence of that is difficult for me.

Potential

"You are a child of the universe, no less than the trees and the stars; you have a right to be here," Max Ehrmann.

This is such an important point for us all to remember. We have a right to be here, to be treated with respect, to be loved, to succeed, to enjoy life. When we step up and claim our right to be here, in a respectful and loving manner, all creation benefits.

Sunrise

I enjoyed the most beautiful sunrise this morning, and it occurred to me that enjoying a sunrise might be a metaphor for good living. One needs to be paying attention, or awake as some teachers are referring to the act of noticing what is going on outside oneself. The attention needs to be timely: the glory of a sunrise lasts but a few moments or minutes. If one notices too late, one misses the glory.

Isn't that true of life? Even casual interactions, like one I had yesterday in a shopping line about wanting a price check on an item, can be moments of profound connection. Sometimes it seems easier for humans to have these respectful connections with strangers, and the people with whom one lives are less likely to see the respect. That, to me, is true discipline: when I treat those with whom I live with the greatest amount of respect and love, then I am behaving as a mature human being. And, I like the definition of discipline that I read long ago: discipline comes from the word disciple, which means to teach. So, in teaching myself the value of demonstrating the most love and respect for those with whom I live, I am able to act accordingly.

Physical decline

Perhaps it is because of being gone a few days, but I am noticing physical decline in Dwane. His grooming is slipping, which Mayo had predicted, but he has always been so fastidious that it still surprises me. Thankfully, he is still showering and shaving, but missing spots and hair a bit amiss. More drooling. A lot more trembling. He has a hard time writing and is still able to read only with one eye closed. Thank God he can still read as it is such a pleasure for him. Our financial advisor suggested a kindle for him. I'll check into it, but with his difficulty with technology, I can't imagine it working well for him. (Our satellite remote control is still messed up from whatever he did while I was gone.) He is watching more television, but I think that is because of the difficulty he has reading. He continues to be consistently alert, for which I am so very, very grateful. It is hard to have a give-and-take conversation with him because of his word retrieval problems and his difficulty tracking a conversational topic. But, overall, he has more motivation and more involvement than he did even last summer, and most certainly more than one year ago. I am grateful.

Prevention magazine news

The latest edition, January 2010, of the Prevention magazine has an article about research done at Blanchette Rockefeller Neurosciences Institute at West Virginia University. By pricking a finger, they have developed a skin test which detects defective enzymes involved with memory function. Even better than the test which finds defective enzymes is that the researchers also discovered that low doses of the chemotherapy drug bryostatin reactivates the defective enzymes. Trials in humans will begin in 2010.

Although Dwane does not have Alzheimer's, for which this research seems to point, it is quite possible that it could help other types of dementia. Wonderful news.

Love

Many have written about love. It has been romanticized, trivilialized, idealized. I like what Marianne Williamson says about love, "By affirming that love is our priority in a situation, we actualize the power of God." But what is love? There is the "tough love" of chemical dependency -- where a person does what is best for another person despite that person's wishes. There is enmeshed love, codependent love. Perhaps a pure example of love is the love a parent might have for a child. Uusally in that relationship we truly want what is best for the child.

How does one act out of love? A rule of thumb I use is that my intention is to say and do what is in the highest and best good of the other person, because that is usually in the highest and best good for me as well. I have developed the habit of only saying to another person what seems to be in his/her best spiritual interest. That, of course, eliminates gossip and criticism. It does sometimes involve reflecting to a person that their behavior does not appear to be in their best interest.

Even in living with dementia I use this guiding rule. My intention is to act and speak whatever is out of the greatest love for Dwane and for life and for us all.

Liberty

Having just been in Washington, D.C., one of the buildings I was most struck by was the Jefferson Building - Library of Congress. Beautiful building. It holds the collection of books that Jefferson made available to Congress after their building and books were burned by the British. I was looking at one of the books for sale in the gift shop, and it described Jefferson as one of the greatest articulators of liberty in all time. It said he was not always able to live up to his ethos, but he was gifted in articulating it. Reading the Declaration of Independence, which accompanying information said was the collective thoughts of many Americans at that time, supports Jefferson's ability to write beautifully for the common liberty for all.

Liberty is such an important quality. The freedom to be and to become whatever we want to be. That is one reason I try to support Dwane's freedom as much as possible. It is a fine line to support his freedom to do what he wants, while keeping an eye on his safety. That is one reason the trip to D.C. was so exhilarating for me. I was free of any responsibility for anything other than myself. Rejuvenating.

Home

I am home from a wonderful trip to Washington, D. C. I took my laptop thinking I could keep up my daily blog, but that proved to be difficult with wireless access and time constraints. I attended a great conference on preventing substance abuse and at night we went to theater at the Ford Theater and Kennedy Center, ate great food (the seafood was wonderful), saw all the monuments. I took the Supreme Court and Library of Congress tours, which I had never done, and we went to Georgetown, which I had also never done. Great trip and very stimulating and fun companions.

It was my first real break from caregiving for over one year, and I am so grateful that the support scaffolding I had in place worked for Dwane. He did well while I was gone. Perhaps it was the few days absence that accounted for my noticing his physical decline when I again saw him. But, alert and doing remarkably well. He did some Christmas decorating and had the house looking good for my return. I am so grateful. Grateful that he was fine while I was gone, and grateful that I got some respite and relaxation from responsibility.

Respite

I am having a wonderful respite in Washington, D.C. The support system scaffolding I created to support Dwane's safety is working well, and I am getting my first real break from care giving for over a year. Love to travel. Love D.C. It is fun that I have been here before and know the way to get around. I am traveling with a group of 6 women and attending a conference. We have seen every monument and have tickets for theater. I have laughed and relaxed. It is so good.

self deception

I recently gave a presentation on the Johari Window and how useful it is as a self awareness tool. "You can't just look at areas of your life that you think aren't working. You want to find all the places where you deceive yourself," Debbie Ford. This seems true to me. It is easy and tempting to numb the pain we don't want to look at with drugs, shopping, food, sex, work, blame or withdrawal; but that does not really ease the pain. Many mental health professionals believe that the best way through the pain is to deal with it. Eckhart Tolle, when speaking of the pain body, seems to indicate that one must recognize that pain is trying to get our attention. A good technique suggested by author, Cynthia James, is to ask yourself what you would do and what difference you would make in the world if you felt no pain or fear.

reward

Well, the reason we moved down out of the high country is evident now. Considerable snow where we normally live, and just a bit of a skiff here. Ahhh. It is so good to not have to worry about warming up the plow and shoveling the deck and when the county will plow the main road. Every day gets better here, and Dwane has acclimated well. He has even left to run errands twice and found his way back. Amazing! Now, for continued good functioning while I am at a conference next week. All is well, and I want always to remember that.

Every day better

Every day both Dwane and I are acclimating to our new house. Finding things. Enjoying the spaciousness and novelty -- and lack of snow. I want to admit to myself that this fall has been stressful because of a number of things besides the diagnose to which we are are adjusting. I want to focus now on equilibrium, peace, joy, well being. Today. Exercise and relaxing into this house.

Every day better

Every day is getting better in our new house. Today Dwane found the plates and bowls with little fuss. Yesterday he ran some errands and found this house again. So, seems as if equilibrium is being reestablished. Things are falling in place and we are both becoming acclimated. Of course, the trickier stuff (tv remote, new cooking range) continue to be problematic for Dwane, but even that is getting better.

It is lovely here. An eastern view, which provides us with sun rises and views of the full moon. I love my other home, but the view there is of trees - no vista. So vista here, eastern views, no snow, good walking and driving. Life is good. I am so grateful for this respite out of the high country and the work involved with large amounts of snow (over 24 feet last winter).

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.

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.

Thanksgiving

"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.

Prayer

"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.

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.

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.

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.

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".

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.

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.

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!

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?

Smile

"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.

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.

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.

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.

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.

Happiness

"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.

Doing well

We are enjoying a longer-than-usual period of doing well; over two weeks. Whether it is that he is doing better (and that seems true) or that I am handling it better, it is smoother, more problem-free. So, perhaps it does not matter why (although it is good to know so that it can be replicated), but to enjoy and be grateful.

Thoughts as maps

Ernest Holmes said, "If we make the effort to look at the good in any situation, we shall find it, and having found it, it will increase." Reason enough to aim our thoughts in the direction of what we want. Cognitive behavior therapy is one of the most researched and effective therapies. We can apply its techniques to ourselves. We can notice what our thought patterns are, and then make changes based on those observations. For instance, I can notice that my thought patterns are a repetition of a "to do" list when I am overly busy. Noticing this, I can direct my thoughts more toward peace. If thoughts of a troubling nature return, then the person can just direct the thoughts toward a more peaceful content again. We can control the content of our thoughts. If we don't, it is quite possible our thoughts will be controlling us.

Meditation

Meditation has for centuries been one way people trained their minds. The Buddha suggested four things to consider:
1. Human birth is hard to attain and extremely precious. We must do something of value with the opportunity.
2. All things are impermanent. The body that we are so attached to will soon be a corpse.
3. Karma is an immutable law. The results of our actions will return to us, so we must plant good seeds.
4. Samsara, the world of perpetual desires in which we have been trained to live, creates endless suffering. We must rise above it for our own benefit and the benefit of all beings.

Whether meditating or not, these are good guidelines to consider.

Counting the blessings

We are going through a very good time, and this is in spite of some external stressful factors. I am grateful. Company yesterday from Dwane's childhood, which was good for him to reconnect and reminisce. Tender, connecting talks. It is good to remember that all is well.

Training the Mind

The third principle for living a good life outlined by the Dalai Lama is tame the mind, but perhaps train the mind is a good way to think of it. A recent reading shed new understanding on addictions. The thought is that addictions train the brain. Addictive substances and activities engage the pleasure center of the brain; thus training the brain to want more of the substance or activity, to have more pleasure. If our brains can be trained thusly by a substance or activity, surely we can do the same to train our brains to have thoughts that are supportive of us and others.

Sabbath

Many religions and cultures have set aside a sabbath day, a day of rest. In times past that was the only day the hard-working men, women and children had to recreate. But in more recent times, a day of rest seems to have less importance. I read an interesting theory about what is important about a day of rest. It is not only a day set aside to worship and to rest, but it can be a day to enjoy adequate rest and leisure to cultivate one's familial, cultural, social and religious lives. It can be thought of as a time to consider that there are other people who matter besides ourselves.

So, yesterday, a day this culture has set aside for rest from traditional work, was a time of lovely meals, a movie enjoyed with spouse, reading a good novel, and some snow shoveling for exercise and fresh air (and to clear the path). A day well spent.

Graciously defined

It seems easier to act the way one wants when clear of what it looks like. So, a review of what does living graciously mean? According to a dictionary, gracious means characterized by kindness and warm courtesy, merciful, compassionate, elegant. Yes, that is exactly how I intend to be in living with this diagnosis. Intention is the key element, it seems, followed by practice. The tone of one's voice, not correcting inaccurate information, fixing nutritious and enjoyable meals are all types of practice in living graciously. Today I am fixing for breakfast a favorite: fruit smoothies. Organic unflavored yogurt blended with delicious frozen fruits. These little things help make up the essence of good living.

Taming the Mind

The second guideline for good living given by the Dalai Lama was to tame our minds. This idea has been explored by others as well. In the inspiring book, Man's Search for Meaning, Victor Frankl distills his concentration camp experience down to an essence: the only thing he could control was his own attitude. This can be true for each of us. We can choose how we want to be, behave, interact, and we can do it. If we are too quick to anger, we can change that. If we get our feelings hurt too easily, we can change that. It seems in observing someone with dementia that there is an element of control for them too, in deciding what attitude to have. Certainly, it is my experience the person with dementia responds better when I am "being" the way I most intend to be: gracious.

Pain treatment

The New York Times article goes on to say that a missing treatment for people with dementia is often pain treatment. "The continued focus on treatment to prolong life often means that pain relief is inadequate, and symptoms like confusion and anxiety are worsened." This article suggests that one consider whether or how much to implement aggressive treatment; like dialysis, ventilators, surgery; but also to consider whether to treat preventative conditions like osteoarthritis or high cholesterol. Dr. Susan Mitchell of the Institute ofAging Research of Hebrew Senior Life in Boston says, "Dementia is a terminal illness and needs to be recognized as such so these patients receive better palliative care." This certainly does not mean no care. "Palliative care is aggressive and attentive and focused on symptom management and support of the patient and family. It's not any less excellent care."

This is certainly not an easy subject. It is, however, an important one.

Physical as well as Mind

A dear friend forwarded to me an article from the New York Times, Treating Dementia, but Overlooking its Physical Toll. The first two sentence starkly state the premise for the article: "Dementia is often viewed as a disease of the mind, an illness that erases treasured memories but leaves the body intact. But dementia is a physical illness, too -- a progressive, terminal disease that shuts down the body as it attacks the brain." This is not new information for me as I was schooled in this aspect of dementia having a person in my life die relatively young from an early-onset dementia, Pick's Disease. Perhaps because the person was so young, it was more obvious how the body was being affected by the destruction of the brain. Very sad.

The article goes on to say that people with dementia are more prone to infections, have a depressed immune response and inability to report their symptoms. The article recommends having a Living Will in place, and recommends avoiding distressing interventions. As per the article, "When family members understood the progression and terminal nature of dementia, only 27% of the patients received aggressive care, but for family members who did not understand the disease, the figure was 73%. These people were subjected to aggressive treatments that would never be considered with another terminal disease. "

It is important to discuss this with the person with dementia and to have a Living Will in place to reflect their wishes.

Taking care of details

There is a story, said to be true, of a woman who lost to sudden and unexpected death her significant love. Friends and neighbors came in their shock and grief to her home where she served them coffee and listened to their grief. Some people wondered why she did not appear to be grieving, did she not care?! Months later these people had gone on with their lives, while she was still deeply grieving.

This story seems similar to living with a terminal illness. One must continue with daily life and take on even more responsibilities, while still grieving. I think it was Virginia Satir who said whining is a small vent for anger. Then, I think, living with a terminal illness is a small vent for grieving. People have different judgments of how one is doing in dealing with the catastrophic illness. Some wondering how the caregiver can concern herself with some details of life. Others exclaim how well she is doing. It seems like it might be a good time to remember that most people are doing the best they can at any given moment.

Essay

There was an interesting essay in the Wall Street Journal, Circle of Care, by Robbie Shell. The premise addressed was that we may be self defeating in our culture to have such resolve for being responsible for our own care later in life. Ms. Shell, in considering with friends what to do in retirement and later life, noticed that no one assigned any role to children. She decided to do some searching regarding that tendency for self-sufficiency. She gives as an example a Vietnamese couple who have made no arrangements for retirement or longterm care. The philosophy in Vietnam is: "The children are there to catch their parents when they fall. The children provide the assisted living." This has been a philosophy in many countries, for many years. Longterm assisted care costs are escalating: about $6000-$8000 a month currently, and higher. Ms. Shell suggests that older people consider reaching for more than their 401(k); and that "perhaps mindful of their own future, our children will reach back."

Interesting thoughts for people who resolve to be self reliant.

Help with rage

A friend has found helpful a book and website, Elder Rage (elderrage.com) by Marcel. This is not a resource I have pursued, but I include it here because I want to include any helpful resources (I do not endorse or promote any of them), so that the reader can select for her/himself what might be useful with their particular situation. Since the various forms of dementia manifest so differently, depending on many individual things, to include what area of the brain is affected, it can be helpful to have a number of resources to support oneself. The above book sounds like it tries to deflect rage, which can only be a good thing -- for the person with dementia and for caregivers. Dr. Ernest Holmes said, "Whatever we think about gradually becomes a subconscious pattern, always tending to manifest itself in our experience." If this is true, then it is important to help someone with dementia from developing a pattern of reacting with rage. It is also important for the safety of the person with dementia and any caregiver.

Virtue's payoff

Some writers and thinkers, the Dalai Lama among them, suggest there is a benefit to the person for practicing being loving and kind. The Dalai Lama calls this "wise selfish". Others have called it karma. There is the belief that for every action there is a reaction, and that can give us pause. What do we want the reaction to be to us? This is a well-studied principle in behavior modification. If we want people to respond differently to us, change the way we have been acting. It is insightful to see this with children. On the playground one can observe that some children have other children wanting to be with them, speaking to them, friendly with them. In other cases there are children completely alone, without companions. (Fortunately, the child who is alone can be taught the social skills to interact if that is what he/she desires.) If one observes, often the actions of the child who has others wanting to be with her/him includes being friendly, fun, kind. When we extend the playground observation to adult life and to dealing with dementia, one can extrapolate the possibility that a reaction for being kind is to feel good about it, and the people to whom we are kind are more likely to want to cooperate with us.

Book recommended

A friend recommended a book that I had not heard of. Creating Moments of Joy for the Person with Alzheimer's or Dementia by Brackey. She found helpful in her own situation a technique recommended in the book, and that is not to argue or try to convince the person with dementia what is reality. An example she gave was if the person with dementia thinks you are someone other than yourself, don't argue. Another example was when the person with dementia thought there was someone else in the room, don't try to convince them otherwise. This way of dealing with delusions is also recommended by the book, 36 Hour Day, which states: "Avoid denying the person's experience or directly confronting him/her or arguing with him/her. Dave Ellis teaches this as a good daily practice for any person in his book, Falling Awake. He suggests that we implement as a practice letting the other person be right.

Using this practice may very well create moments of joy; certainly it would seem that it would create more peace. And who doesn't want that?!

Virtue

According to Joan Borysenko, one aspect of cultivating virtue is to practice lovingkindness in every interaction. I can get my mind around that more than the more pious definitions of virtue. That is easier than an elusive definition. Practicing lovingkindness can be goal; an achievable goal.

A dear friend has expressed concern over some of the comments posted on this blog. I do not usually look at the comments, so I was unaware. I am writing this blog for the intention of Dwane and me to live with this diagnosis remembering that we want to focus on the highest quality of life and feeling gratitude that we can live our daily lives thoughtfully and with purpose, knowing they are finite. I am sure there are people who do not resonant with the thinking I am presenting. A different blog may be the best for them.

Cultivating virtue

If cultivating virtue is the first step in the guidelines for living suggested by Buddha, then what is virtue? American Heritage Dictionary defines virtue as moral excellence, righteous, goodness, chastity. How does one know if one is cultivating virtue? One way is to see if one's words and behaviors match. When people's words and actions do not match, I have found the more reliable quality to go by is their actions. It seems that the more unconscious people are, the more their words and actions may not match; and conversely, the more conscious one is, the more words and actions are congruent. Author Karen Armstrong, in A History of God, says that the authentic test for religion (let's substitute virtue), is not what people believe, but what they do. I would say that unless one practices compassion and lovingkindness to all living things, including oneself, then one has not cultivated virtue.

physical symptoms

Dwane does not usually talk about (or I think even notice) physical symptoms of his diagnosis, but yesterday he said he had not felt good all day. He said his brain & head hurt, as if he had been wearing a cap that was too tight all day. Interestingly, he seems somewhat better to me. He helped me fix a vacuum, and he was the one who figured out some of the aspects of the fixing. I have noticed messier eating, much more slowness in mobility. I wish they knew more about this disease process, how to prevent it, how to stop it.

Freedom

I am reading, The Other Queen, (Phillipa Gregory). It is fascinating to read how limited the freedom was in those days (1570's). Women could not own land in their own name. All land and money was in a man's name. If a woman became a widow, she was bereft. It is also fascinating to see the emerging prejudice. Though fiction, the book is well researched for historical accuracy, and a main character, the Count's wife, says of her treasures that she stole from monasteries, "these are the goods that God has given to me as a reward for the purity of my faith". Wow! And, of course, this spiritual arrogance went the other direction as well. It is amazing in the history of humans how much harm has been done our fellow humans because of misplaced belief that we are the special ones who have God's blessings, and those other folks don't.

And how do I see this played out in current life? Even in this family inheritance issue, which is, it seems, always about power and money. Someone feels more special than others and therefore more entitled to make the decisions and reap the rewards. I think it is a human tendency that we each must be aware of and prevent. The harm we can as humans do one another seems largely based on this tendency. For my part, I want to be conscious of this tendency and avoid it.

Eye of the needle

Yesterday the pastor spoke on the New Testament reading stating that it is more difficult for a rich man to get to heaven than for a camel to go through the eye of a needle. He offered a thought I had not heard before. He said it was not that the man was rich that was what would keep him out of heaven, but the emphasis he put on his richness. The pastor said that in the time when the New Testament was being written, the prevailing thought was that if a person was favored by God, then that person would be blessed with riches and good health. Not unlike some of the teachings of today, is it? The point, according to this pastor, was that a person had to be willing to give up what he/she thought was showing the favor of God, in order to really enter into the presence of God. Interesting perspective.

I feel I have lost the focus of this blog, and perhaps that is because, like many times in life, the dementia is not what is most challenging for me right now. What is more challenging is the extended family dissension, the discerning what is right and true, and the mature stand in that truth. This challenge, too, is serving a purpose which affects a number of people. This challenge again causes me to think that the only real purpose for me is to develop myself personally, emotionally, spiritually in order to live life with the highest integrity for myself and all others. It is not so much living graciously with dementia; it is living graciously with all of life experiences.

Buddha's teaching

The Buddha taught three guidelines by which to live our lives. He said to cultivate virtue, do no harm, and tame your mind. What good guidance. I think that is one reason it is good for a person to have an intention for personal spiritual growth and development. The ego is so prevailing, and some say cunning, that unless one develops one's own self, it is not always easy to know if one is doing harm or not. I have noticed that people can with great fervor stand up for or against something and they are convinced they are right. But are they doing no harm? When one is in a challenging situation, the only thing they have to fall back upon is the development of their own virtue, or worded in a different way, the personal/spiritual development they have cultivated. I find a stance that helps me is to always want what is best for everyone involved. With that approach, it is easier for what I want to be what is also good for all involved.

cabin fever

It is only early October, but because of the snow and inclement weather, I am already experiencing too much togetherness. In the warm/dry months both Dwane and I spend a lot of time outdoors. Now the only time I can be by myself is if I leave. Dwane is inside, back sitting in a chair, all day, every day. Oddly perhaps, that is one of my greatest stressors. Never having time in my own home alone. I know that I replenish from solitude, and it is so hard to get that once the weather changes. I must be more discouraged than I admit, because usually I am good at thinking of alternatives. Today I will take a walk, a mindful walk. Tonight a movie and some fun. It is good to have things to look forward to.

Emotions

A thought among some newer spiritual paths is that we humans were created to be a means for a perfect intelligence to express thoughts and feelings. Interesting. Another idea which strikes me is that we can remain in joy if we truly believe all is well. Between the controversy over how an inheritance was/is being handled and the reality of Dwane's diagnosis, I have found myself not sleeping well, feeling anxious. Because of a current spiritual thinking that we need to keep ourselves feeling happier thoughts, I feel concern when I feel any of the feelings that are more "down". The idea that we were created partly for the purpose of expanding thinking and feeling is soothing. Then, it would seem, all feelings are important. I know in my therapy training I was taught that the quickest way through a feeling is to really feel it. So, the dichotomy. A pastor from a conservative mainstream pulpit recently derided the idea that feelings and thoughts were important for creating the quality of life one wants. I have learned in my life a spiritual truth, and that is: it is important to not deride those things we do not understand -- they often contain important truths if we are open to them.

So, today, my practice is going to be on truly believing that all is well. I would not be upset by the posturing and bullying of family members over what is right, if I truly believed that goodness prevails. So, I choose to believe goodness prevails, and I hope my emotions follow my choice.

His Perspective

A friend has suggested I write more about the perspective of the person with dementia. That is very hard to do, as I can pretty much just go by my observations. But last night someone called to talk with Dwane who has just heard about his dementia, and she had questions. I heard Dwane telling her two things I did not know. He has almost constant double vision which is problematic when he reads (I had noticed that he reads with one eye squinted shut) and when he steps down off a curb. He also said to her that his brain sometimes "feels funny in there". Interesting glimpses into what he is experiencing.

Karma

It is amazing how long we as a species have felt that we, in some way, determine what happens to us. The Puritan poet, Anne Bradstreet wrote in 1666 a verse speculating that she must have caused the fire to her home by too much emphasis on having material things. Most religions have some aspect of the Golden Rule: Do unto others what you want them to do unto you.

But when one is facing a very significant life challenge, there is not much comfort in trying to discern if one has "caused" the challenge. The Abraham teachings are so positive: Keep one's emotions in the higher vibrational range toward joy, and life unfolds deliciously.

So, how does one come to peace with a significant life challenge without self blame? I remember reading, perhaps in the book, "Why Bad Things Happen to Good People", that we can think of bad things occurring by imagining God standing on one mountainside and, with sadness, seeing an avalanche go down the opposite mountain. God did not cause the avalanche. Neither, I think, do we cause the catastrophes in our lives, at least not always.

It is important to me to live my life with the highest possible integrity, with my actions and intentions being focused on what is best for all people. It is also my experience, that despite these intentions, bad things do happen.

Presence

Another aspect brought forth in the workshop on spiritual writing was the need for the writer of spiritual material to be present and to call forth others to be present. I think that is a necessary ingredient of spiritual writing. It is also a byproduct of my intention with living with dementia. Since I have pretty much shelved my professional life and am focused on making the best of all things right now, I am much more present. Interesting. I have strived for years and used many practices to be present. I read Eckart Tolle's book, The Power of Now, and agree that it is only in the now that anything really happens. I read and loved the idea that the reason for being aware of our breath is that we can't breathe a minute past, nor a minute in the future. Only now. Still, I would find my mind going over the lists of things to do or even, I regret to say, the rehashing of some insult or injury (What a waste of time!!!). I got better at being present, but I did not develop the practice as much as I wanted. I really preferred not to have the very significant soul-opening experience that Tolle seems to have where he sat on a park bench for 2-3 years after. So, perhaps I am getting my wish. Perhaps this experience can for me be, in part, a practice of being present. For that aspect I am grateful.

Bleak day

Today is overcast and snowing. Quite a bit accumulated. I don't seem to be emotionally ready for it this season, and I miss my early morning runs. Whenever the season/condition changes, I have a bit of adjustment difficulties to create a new exercise regimen. Otherwise, all is well. Dwane is doing very well and has been for a couple weeks. I am still somewhat surprised at peoples' misunderstanding of what we are dealing with. Such misconceptions and generalizations about dementia. Yesterday someone said to me that Dwane probably did not drive much because he would not be able to find his way home. Of course he can find his way home. What he cannot do is process multiple streams of input, like heavy traffic and changing lanes on an interstate. As more and more of our world ages, perhaps there will be better understanding of the many facets and faces of dementia. I am so grateful that Dwane is still very capable of making decisions, understanding information, and remembering details. Of course, some of that can probably be attributed to our quick response and multi-faceted approach to dealing with this diagnosis.

Writers' Workshop

Yesterday I attended a Writers' Conference and one of the sessions I attended was Spiritual Writing, as that is what I believe I am doing in writing this blog. One of the speakers said that one cannot be a spiritual writer unless one has fully embraced the spiritual journey oneself; one has to have something of value to say and that can happen only if one is intent on their own spiritual development. I agree. I also think that is part of my conscious response to this diagnosis of dementia (and it could be any diagnosis or life challenge). I know that how I respond to this life challenge is integral to my continuing spiritual journey. I know that I am being called upon to stand in truth, love and open to possibililties.

Fear

An interesting reading of Ernest Holmes suggests that fear is the only evil there is; and if fear dominates our thoughts, that is what hell is. There must be truth to that because we have made it into truisms in our language: "The only thing to fear is fear itself." It seems to me that another hellish aspect of the human condition is negativity, but maybe that is fear also. Fear of hoping for the best, fear of success, fear of betrayal, fear of disapproval.

I watched a movie this week that I enjoyed so much, I watched it twice: "The Scarlet and The Black". Based on a true story of an Irish priest in the Vatican who was instrumental in saving thousands of lives during the time of the Nazi occupation of Rome. Fascinating to watch his courage. And amazing the difference that can be made by one human who demonstrates integrity and courage. I want to remember that. It only takes one person behaving with integrity and courage, focused on what is best for us all, to prevent bad things from happening.

Even in this chapter of life with Dwane having been diagnosed with dementia, the process is made different when I face this with integrity and courage, and make choices based on what is best for us all. Perhaps it is as important to behave this way in the small things of life, as in the big, more obvious challenges. One individual with dementia may pale in importance to saving thousands from death and torture, but perhaps it is the process that is what is important. Consciously choosing and acting with integrity and courage and making one's decisions based on what is best for all concerned.

Lyme Disease

I just learned from a dear friend yesterday that Lyme Disease can be misdiagnosed as dementia. Wow!! I had never heard that. Dwane did have a tick that was attached last spring, and I think that it is a small chance that what he has is Lyme Disease, but it is certainly worth checking out. The first neurologist we went to did check for thyroid disease, at my request, and he also checked for syphilis which would not have occurred to me. Dwane did demonstrate hypothyroidism, and I think the thyroid supplement has been part of his overall improvement. But I did not know about the need to rule out Lyme Disease. I will talk with his doctor. It would be a lovely scenario if Lyme Disease was what we are dealing with, compared with the alternative --- a progressive, incurable destruction of the brain.

I am so grateful for the open, caring, sharing of information among friends. My blog is serving what I had hoped. My friend has been reading this blog, and emailed me with the information about Lyme Disease. Isn't this a lovely world in which we support each other, want the best for each other, share information that helps each other?!?! Yes, a fine world indeed.

Winter has arrived

Overnight the splendor of the changing leaves has given way to wind and snow. It appears that winter has arrived with at least her first taste of the season. One of my readings today was about winter and thinking how it symbolizes life, to notice what is dying in nature and to consider what is dying in one's own life. I feel like a lot is dying for me. I have not done anything in my most major profession since June. It feels dismantled and in death throes. Every day I notice another way that Dwane seems to be dying to me, as companion and friend. His personality is often so very changed. I know I have said before, but it seems so poignant, he just seems at times to collapse into himself and be gone from this dimension. We are also dealing with what appears to be the betrayal of family around an inheritance. Death of an illusion of trust. Plus the opportunity to stand up for one's rights.

Usually I love to see winter come, and I'm not sure if it is because of the horrific winter we had last year or the evidence of so much death and decline in my own life, but I am finding I am dreading the work, the house-bound aspects, the inconvenience of winter.

Fall colors

Today on this last day of September I am struck by the beauty of the fall. Brilliant colors sprinkle among the evergreen trees. Last night a neighbor called to alert us to the hauntingly beautiful song of an owl echoing down our valley. Such splendor and abundance. Today I hope for a bike ride, because they are forecasting inclement weather tomorrow.

In one of my readings this morning, a favorite psychiatrist of mine, Carl Jung, is quoted: "If you are now in the dumps and up to your ears in mire, you must tell yourself that you were flying too high and that a dose of undiluted hellish blackness was indicated. The pickle you are in is certainly something you couldn't have brought on yourself. This shows that someone 'out there' is surrounding you with provident thoughts and doing you the necessary wrong." Joan Borysenko goes on to say, "I enter this season with gratitude for the things I will learn from the cosmic agents of awareness, those 'someones out there' who sweep the unconscious and create the dramas that bring me to wholeness."

People do not understand that this is my position with Dwane's dementia. I cannot know how this diagnosis of dementia serves Dwane, but I do know that how I respond to his diagnosis of dementia is critical for my own spiritual development.

Postitive Thinking

Today we go for hypnosis. We have not been in awhile because of schedules and the hypnotist being on vacation. I hope we can "cement" in some of this really positive attitude Dwane has been displaying. I also want the hypnotist to address the potential for violence. We are still having a good week, although Dwane was more like his old self yesterday complaining of many things. It seems it would help him if he could but look at the positive in life. Wouldn't it help any one of us? I know I strive to look for the positive and not the negative. Both are there, and I think whatever one pays attention to, gets bigger. Like the Native American fable. Everyone of us has as parts of us a helpful wolf and a destructive wolf. The wolf that dominates is the one we feed.

Sundowners

Sundowners is not something Dwane experiences, and I am only vaguely familiar with it. It is a condition common to some types of dementia where the person has much more difficulty being lucid and calm when the sun is setting. A friend told me of taking a family member with dementia to a family celebration in the late afternoon and evening. The person with dementia became very confused, upset, violent. It is surprising how different the different types of dementia are. While Dwane does not have sundowners, he does have radical changes in his behavior and lucidity. It is just not at all predictable, as sundowners apparently is. Dwane also probably will not lose his ability to recognize people, as is common with some types of dementia. That is one reason I feel so strongly that the person with dementia should get a good neurolopsychological evaluation (after ruling out physical reasons for the cognitive changes, such as thyroid disorders). So that caregivers can know what they are dealing with and how to help support the behaviors and they want and the safety and happiness of the individual.

Dwane has been much more congenial, helpful and pleasant this week. When I complimented him on that last night at dinner, he said, "Well, I have some things to make up for." (meaning, I'm sure, his violence the evening last week.) So, there is an element of choice in his behavior. It will be interesting to see how much choice can continue to factor in. I hope he can always choose how he responds.

Illusions

One of my readings today was about the importance of being willing to let go of past opinions. This has been a life practice for me, as my family of origin clung to their opinions like breastplates. Stating an opinion with great authority, as if it were true. Trying to force one's opinion on someone else, and judging those whose opinions differed. Because this was such a big part of my formative years, I have been given the opportunity in life for lots of practice in releasing opinions and living gently. I think this applies to living with dementia or any other debilitating illness. People assume Dwane cannot do things because that is what is generally thought of with Alzheimer's, like being able to adjust to a new home when we house sit or being able to remember who people are. Those type of memory problems are not a part of Dwane's experience. I also want to be aware of not having opinions of what Dwane can and cannot do. For one thing it varies so significantly from day to day, moment to moment. I am grateful for the period we are going through right now, which is one of more lucidity.

It is such a good period that yesterday I went to see the play, Mama Mia, and out to dinner with 3 women friends to an especially good restaurant. I got to meet two new women, and I really resonated with one. A kind woman with a lovely spirit. I hope to develop a friendship with her.

Life is good, and I want to remember that. Even this progressive, incurable process Dwane has been diagnosed with. Since death is a part of life, what an opportunity to face it openly, with dignity. We have been given the choice of how we want to approach his death. Amazing.

Anxiety

My daughter has reflected to me that she thinks I am more anxious about Dwane and safety, etc. than I know. I think she is right. Last night Dwane and I were at a fundraising social event. Another woman I know whose spouse also has dementia stopped to say hello. As she was speaking to me, she was also scanning the room. She said, "Oh, he's found the food line. I don't need to worry." This exchange was like a mirror for me. I am always scanning the room, or the yard. I am always hyperalert to where he is and if he might be in danger. When I am away from home (and I am so glad I can still be gone and he can remain home safely), there is always a layer of anxiety for me wondering if he is okay, if he could handle a problem should one occur, if I need to head home. There is more than worry about his safety. This past week we were out together for lunch and to see the fall colors, and Dwane reached for his wallet to pay. His wallet was not in his pocket. So, anxiety again. Did he leave it at home or leave/lose it somewhere?!?!? Recently, he put his wallet through the washing machine. He still has 2 credit cards with large credit amounts on them. I believe it is time to get him a different credit card with a small balance. I am pretty sure he would not spend money foolishly at this point, but he does lose things. I need to do whatever I can to reduce my own anxiety, because it causes me a lot of weariness -- and anxiety, like any form of stress, is bad for my body.

Assisted Living

There are people in my life who are pressuring me to put Dwane into assisted living. Besides the obvious ethical issue: which is that I live my life by determing what is true for me, and putting Dwane into assisted living for my own convenience is not congruent with my life purpose, since I do not see him at that point of need yet. I also need to consider the financial aspect. I met with our long term care insurance people yesterday. I am so grateful that I was inspired to get long term care insurance, but it will only cover slightly over half of a month's expenses in an assisted living center. The cost of an assisted living center is about $6000 per month. Our long term insurance would pay about $3500 a month for a maximum of 5 years. Of course there is an inflation index that would figure in, but by the same token, the cost of an assisted living facility would also go up. So, I will continue to make the wisest choices I can on behalf of Dwane and myself. Long term care insurance is a good thing to have, but it is not a panacea.

Guardianship

After the night of belligerent, abusive behavior and glimpses of violence, Dwane and I have talked about guardianship. He and I both want to have something formal while he is still very able to make the decision. It was sad for him to discuss it though. He still uses terms like, "beating this". Yet, I can see daily evidence of the progression of this brain-destroying disease, especially in his physical body: countenance and gait and balance. We still have the intention of quality of life and indepent living in our home for as long as we possibly can.

Tough, tough decisions.

"Dressing" the part

Schools have long known that if they have dress codes or require wearing of uniforms, behavior is different. Children know that it is easier to pretend you are queen or king, if you are playing "dress up" and dressed like one. I realize that is what I am doing with this blog. I am "dressing the part" I want to play with this disease, and it wouldn't matter if I were witnessing dementia, cancer, or any other terminal and progressive illness. I am different; I show up different in my interactions with Dwane if I help myself "dress" the part by focusing on the quality of our lives and how I want to interact with him through this blog. It helps me "play the part" and show up the way I want to. Of course we have our ups and downs, which I try to candidly share in this blog without wallowing in the negative; but this blog helps me. With it I have consciously chosen how I want to "dress" for this role in what life has served up for me. I think choosing consciously and then practicing in some format is the secret to showing up the way we want to in life.

World Alzheimer's Report

Anyone who reads a major newspaper saw yesterday the article on the results of the World Alzheimer's Report. Staggering. More than 35 million people around the world are living with Alzheimer's disease or another type of dementia. This count is higher than predicted because previous counts have underestimated the amount of dementia in developing countries. Unless there is a major medical breakthrough, this report estimates that the number of people with dementia will double every 20 years, to 115.4 million by 2050. Part of the problem is that in some countries (and I believe that includes some populations in the U.S.) dementia is seen as a normal part of aging. It is not.

The bright side. With this much impact on our human and financial resources, I hope much more emphasis will be put into medical research for prevention and treatment of dementia. Right now this disease affects 1 in 8 over 65 years of age, and 1 in 2 of those over 85. The report urges the World Health Organization to declare dementia a health priority, with new investments in research. Perhaps this is an opportunity for political activism on our part.

The ups and the downs

This is such an unpredictable disease. We had a very bad night the night before I left for the marathon. I got my first glimpse of the real possibility of violence. So angry. Even posturing and threatening to hit me. My usual strategies of reasoning and explaining were to no avail. Very upsetting for both of us. I was tired and feeling anxious because of his upset just before we left. It started with my saying I did not want him driving on the interstate while I was gone, and his announcing that he had planned to drive to a city several hours away -- a city he has not driven to for over a year. I was horrified that he was thinking of doing this while I was gone, and he thought I was being too rigid in not wanting him to.

The good news is he seems to have done just fine while I was gone, with the help of our son-in-law who came to stay one night (something else that made Dwane mad the night I was leaving). And the other good news is that we talked when I got home and he has made the commitment to be in control of his tendency to get mad. I'm not sure with this disease that he can do that. But I will try communicating more and earlier, and I am meeting with longterm care insurance people this week and having some strategies in place should this occur again.

I am delighted that he could be home alone overnight, and I came in 2nd in my age category in the 10K at the marathon. About 10,000 participants overall. Very organized and quite an experience! It was easier than I thought it would be.

Postings interruption

Much to my delight I find I do have people who read this blog daily, so I want to tell them that I will be gone and not blogging for the next 3 days. I am on my way to go visit my son and his family and to participate in the marathon with them and my daughter. I will resume my blog on Sunday, Sept. 20. I am so excited to be doing this with my children and families, and I see this as a ritual to say "good-bye" to the Air Force and what it has been for my son and our families.



One of my readings this morning was on conscious action. It gave the example of how once one of us has broken through a barrier, then that barrier is broken for all human kind. I believe this. The example the writer gave was once one person ran a four-minute mile, then any good runner could do it. Can't we think of many examples in life which supports that truth? The writer, Rev. Gregory Toole, goes on to say that we can apply this to our own lives. We can be like the drop of water in the Persian proverb. My belief is that when any one of us breaks through old limiting thoughts and/or discovers new ideas, that break through is then available for all of human kind. How hopeful for us all.

Fascinating article

I just read the most fascinating article in the Sept/Oct AARP, "More Good Years". It cites the statistics from the Greek iland, Ikaria, where researchers from National Geographic and AARP were looking for Blue Zones: places where an extraordinarily high proportion of natives live past 90. One in three Ikarians live past 90. Of that 30% of the population past 90, none has any sign of dementia. Amazing.

The article cites the reasons as: 150 native wild greens grow on Ikaria/some have more than ten times the antioxidants of red wine, drinking wild mint/chamomile and other herbals teas, an indifference toward being rushed/time-restricted, lots of walking, social connectedness, drinking goat's milk, eating a Mediterranean diet, eating Greek honey which is unusually high in anti-inflammatory and other properties, eating good raw olive oil, growing one's own food, having a meaningful religion, baking one's own bread.

I am going to learn more about the greens they eat. Might it be possible to reverse some dementia (the Mediterranean diet has been proven in some research to do so) with diet and lifestyle?!?!

Nonattachment

One of my readings this morning quoted J. Krishnamurti, "This is my secret. I don't mind what happens." What an amazing approach to the world. I'm sure we have all heard this in one form or another; nonattachment, serendipity, equanimity, etc. But to actually live it! I think to actually live it, I really need to immerse myself in the truth that things are working out for the greatest good for myself and others. I need to trust that while this diagnosis of dementia does not seem to be the highest and best for Dwane or me, that it is serving a purpose that I cannot see or know.

I do know that I am most stressed when I am trying to control things, rather than relaxing and trusting that all events are purposefully part of the greater good. Perhaps if I just decide to believe that, the belief will come.

To thine own self be true

One of the things which I realize causes me to feel discouraged is when I get a lot of advice (pressure) from other people to do things the way they think I should. I was discussing this with a dear, dear friend recently. It is a balance. I really like getting other people's thoughts on things, as I may not have thought of some viable options. But, opening oneself up to other's thoughts also seems to open oneself up to people trying to convince me of one way or another. I have noticed this all my life, and as the youngest of four children, my older siblings would use tactics to get me to yield to their way. Whenever I have difficult decisions to make, it has seemed that family members and sometimes friends disapprove of the way I am choosing. That is true now too. Some people seem horrified if I leave Dwane home alone (I think he can be safely left some at this point), but on the other extreme I have people who are around Dwane briefly and tell me they think he is "fine". So, once again I am finding my own path amongst the many options, listening to other's thoughts, and choosing for myself.

Preparing for a good experience

I was talking over the weekend with a friend who has a relative with dementia. We were discussing how to help the person with dementia be at his/her best for a family occasion. What I use with Dwane is something I used with my children when they were young. I tell him what to expect from the event, and what I expect from him. For instance, when we fly to Italy to see his daughter, one of my fears is losing him in the airports. So, I will talk to him ahead of time and we will agree on a plan for how to handle when he goes to the bathroom. My thinking is I will just wait outside the men's toilet. And, when I need to go, I will sit him in a nearby chair to wait for me. I also want to just relax and have fun while we are gone, so I am going to have a plan with him about alarm clocks and getting up. (He sometimes gets up about 3:00 a.m. to shave and get ready, especially when he is anxious and things are not familiar.) We won't need to get up early except on the days we fly, so we will have a "rule" of no alarm clocks except on those days. The days we fly will be problematic, as he will probably be getting up off and on all night; but perhaps not if we talk about it and have a plan.

The point is: a person with dementia is very much like a child (except one dares not treat them as such!) in that they seem to behave better and have less anxiety if they know what to expect of an occasion and what is expected of them.

Something to look forward to

As I write this, Dwane is on his way with our son-in-law to a large university football game. He sounded more upbeat than I have heard him in a long time. It reminds me of the importance for us each to have something to look forward to enjoying. I am enjoying the "space" in my own home for the 2nd time in almost a year. That kind of space is important to me. To have to adjust to no one else's pace, energy, etc. I was going kayaking with my daughter, but it is rainy and cold -- so lunch instead, and just some good connecting time. I have also found some land that is promising to build upon. What fun it would be to design & build a house just the way I wanted to it be. Things to look forward to.

Memories can be purposeful

It occurred to me overnight that my last posting served more than reminiscing. In the diversion curriculum I wrote, to divert youth from using alcohol and other drugs, I incorporated Dr. William Miller's Stages of Change. One of the most useful strategies in creating and maintaining change in one's life is to remember when one implemented a similar change. Very powerful tool.

Helpful memories

Today I had two memories which are helping me deal with this new life of living with someone with dementia. I had been feeling "lost" and without purpose after dismantling most of my professional life (feeling the need for him to not be alone for as long as I had been previously when doing my professional work). I also felt discouraged about what to look forward to. It seems every milestone is the reverse of what I am oriented to notice. As a young mother, I looked forward (as any parent) to the first words, first steps, etc. With this condition, it is noticing yet another thing that he cannot do. It also felt endless to me. Perpetual downhill prognosis with no end in sight, and rather horrifying if one thought of the ending days.

So, I remembered today two memories. One was when at age 24, weighing 133 pounds at full term pregnancy, I was giving natural birth to a large (7 lb. 15 1/2 oz) baby in a breech delivery. I remember consciously thinking in the 5 hours of hard labor that I was either going to die or the baby was going to be born, and it didn't really matter, because in either case, it would be over. It wasn't really that I was being fatalistic, I just needed to put some time parameters on the misery. I knew it would not last forever. I know this stage of life with dementia will not last forever either.

The second memory was of myself as a young mother who made the conscious choice to quit work and be a stay-at-home mother (one of the choices in my life about which I am most grateful). When my children were very young, there were times when I felt chained to the house - literally. It was a shocking change in lifestyle for me. And I adapted. I would wait until their father came home, and then I would go running. I can adapt to this life with dementia too. And I will. I realize I am good at "postponing" my more-normal life when I see a higher calling. I am capable of putting my life on hold and choosing to deal with some life situation when I know it is not forever, when it is - in my opinion - the integrious way of dealing with the situation, and when I see greater meaning in responding to the situation than in continuing life as usual.

Milestones

Today I picked up our disabled parking decals. Dwane was resistant to getting them, and I encourage him to walk; but between his motor slowness and his balance difficulties, I can see where disabled parking permits can be so helpful to us. (and I wanted them for when our son-in-law takes him to a big university football game this weekend)

Perhaps it would be helpful to me to look upon this journey as one of milestones: getting him to a doctor who would listen to me; getting him to neuropsychological testing so that he could see the problems I was seeing in his cognitive processing; getting the medications that slow the progress of this noncurable and progressive disease; getting a driver's evaluation; and now, getting disabled parking permit.

This is a journey I have never done before. I have always been looking at journeys in which enhancements and improvements were being made. How can I turn this into a journey of delight, instead of a journey of disappointments?

Looking for the good

Again this morning my readings were about looking for the good in any situation. That seems to be the theme for the week, and I think the theme is trying to tell me something.

I find it fairly easy to look for the good if I stay in the present. If I am just thinking about today; things are going along okay. If I look toward the future, all I see are horrifying aspects. I was with my brother-in-law when he died of Pick's disease, another form of dementia. I watched Dwane's aunt and mother both die very long deaths with dementia. In all cases it seemed like a horrifying way to die. But, neither Dwane or I are dying today. Yesterday he finished the repair he was doing on his trailer and mowed the lawn. All is well.

In other big, and seemingly negative, events in my life, I have later been able to see the good that came from that event (sometimes even within the event I could see it). I intend to look for the good in this life event.

Balanced Life

I think we do a good job of having a physical environment that supports Dwane's independence and both of our happiness. I may even have solved the snow removal equipment issue. My career has been dismantled to a large degree as we deal with this, and that is a loss for me. It is hard for me to find a sense of purpose without the outlet of work. Family and friends is something that can be improved in quantity and quality locally, as can social/fun. We were going to have an evening gathering at our home this evening, but it had to be cancelled because of another commitment, one which is not fun but maybe important.

It helps me to look at the wheel of life, or some similar rendering, to see if all important aspects of my/our life are being met.

Gratitude

Brother David Steindl-Rast advocates a practice of gratitude that is different from others I have read. Before going to sleep each night he thinks of something about which to be grateful that he has never expressed gratitude about before. It is a good practice. It can take us from the more familiar or mundane (health, happiness, wealth) to noticing the smaller aspects of our lives about which to be grateful. Sometimes when riding my bike on the mountain trail, I am grateful for a butterfly that floats by and around me. Yesterday I was grateful for the healthy, young runners I met, who were so obviously enjoying themselves and their running. This gratitude helped offset the incident of the dog lunging at me. Really, isn't it true that one can choose upon what to put one's noticing?

Focus on the positive

In one of my readings this morning, the wonderful, early positive-thinking teacher, Catherine Ponder, says, "When you bless a problem, injury, lack, or an enemy, you are calling forth the good within them, and you will be pleasantly surprised at the good that comes through them." Without getting too much into the mysterious, I do think there is great value at having the intention of noticing the things in life about which to be grateful. With a life-crisis like dementia, I find it is easy to fall into just noticing the things going wrong, worrying about what the future holds (like, can I safely leave him and go participate in the marathon with my grandson), noticing the things that are no longer there. It is just as easy, and it is very good practice for my mental health, to notice all the goodness still in our lives. The beauty of the fall colors which are beginning to change in the high country in which we live. The fact that I get to ride my bike on my favorite mountain trail this morning. The fact that I washed all my windows yesterday, and I love being able to see clearly the outside and the light that comes in through the clean panes. The fact that Dwane and I can still laugh together, enjoy a great meal, be active. Today, I intend to see only the good, only the things for which I am grateful.

Discouragement

In my situation, the one to feel discouragement is the one providing the care. I thought if I got all his prescriptions which needed refilling ready to be refilled, he could drive to our local pharmacy and pick them up. But, now I am wrong about that. Yesterday I had to reschedule my entire day because he went to get his prescriptions and came home with none. I still do not understand what went wrong, and, of course, he cannot explain it to me. But this looks like yet another thing I will have to be completely responsible for. I have slipped into discouragement. It seems when I have expectations (he can still do this simple thing if I arrange it for him), and then he is unable to, discouragement for me is likely. I need to change this pattern for myself.

Coping with Crisis

Another benefit from dealing with a crisis, according to Rudolf Moos at Stanford University, is that we become more resilient. New circumstances force us to develop new skills. This can lead to developing more self confidence, and it certainly can assist us in developing stronger capacities for dealing with life's ups and downs. Dealing with a crisis can cause us to seek new information and resources and to turn to a confidant for support. Seeking help is, according to Rudolf Moos, the turning point in positive coping.

Dealing with crisis can also help us regulate our emotions. I'm sure we all know adults who have temper tantrums common to 2-year olds. Dealing with a crisis, like caring for someone with dementia, can help prepare us for the intense emotions that result. To cope, we learn to bring our emotions under control so that our cognitive processes can deal with the crisis.

Dealing with a life crisis, such as caring for someone with dementia, can result in us being more resilient, humble, having closer relationships, developing better coping skills, setting new priorities and having greater self understanding. It depends on how one deals with the crisis, and seeking help is the turning point in positive coping (Rudolf Moos).

How do deal with this as a crisis

Psychologist Rudolf Moos at Stanford University Medical Center has done research on ways to handle a crisis that can also change your life. One of the strategies is to realign our basic values and priorities. We have many options when life hands us something unexpected and unwanted. It is important, in my opinion, that we choose how we are going to handle it. I know my way has always been to look directly at what is, and then make choices aligned with what seems to be the best options, with the new altered reality.

I have dismantled my professional life, because this disease now takes precedence. Facing something that is incurable and progressive, I realize that life is short and I am making new decisions about what to do with my time. More tomorrow on how to let crisis change your life.