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.