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.

Tips for anxiety

Again, hypnosis has been more helpful than the medications for lessening anxiety. The other things that help are predictability and being prepared. Dwane does much better if we keep a routine. It does not have to be rigid, but some framework of a routine. Also, I make sure he knows well ahead what time and where we are going. In unfamiliar situations he will ask over and over what time the same event is, or where it is. I find it best to just answer repeatedly. If that is too annoying to do, then writing the time and place on a piece of paper for the person with dementia seems to help. Perhaps the worst incident is if we have to get up earlier than usual. He has trouble setting an alarm clock correctly, and even if it is set correctly, he is so anxious that he often gets up hours before we need to. I haven't found an effective solution for this yet. Has anyone else?

What can be done about apathy?

Of all the behaviors that accompany dementia, apathy and anxiety are especially problematic in our situation. The medications, Aricept and Namenda, have helped with cognitive problem solving somewhat, but apathy and anxiety were untouched. So, here is where hypnosis has been such a help. I am so grateful to my daughter-in-law for calling to my attention the research being done in England, which seems to be sound research, citing hypnosis helps more with the behavioral aspects of dementia than medication does.

Dwane had such an extreme and dramatic change in behavior. I used to refer to him as the EverReady bunny, like in the commercials. Just going, going, going in some type of functional and productive way. But, except for personal grooming, Dwane did nothing but sit in a chair from last fall to this summer. Hypnosis has changed that. He is engaged every day for part of the day in purposeful productivity. I am so grateful.