Dec 31, 2009

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.

Dec 30, 2009


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.

Dec 29, 2009


"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.

Dec 28, 2009


"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.

Dec 27, 2009


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.

Dec 26, 2009

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.

Dec 25, 2009

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.

Dec 24, 2009


"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.

Dec 23, 2009


"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.

Dec 22, 2009


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.

Dec 21, 2009


"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.

Dec 20, 2009


"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.

Dec 18, 2009


"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.

Dec 17, 2009


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.

Dec 16, 2009

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.

Dec 15, 2009

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.

Dec 14, 2009


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.

Dec 13, 2009


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.

Dec 12, 2009


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.

Dec 8, 2009


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.

Dec 4, 2009

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.

Dec 3, 2009


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.

Dec 2, 2009

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.

Dec 1, 2009

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).