Expect the unexpected

So, with all precautions in place, with great behavior plans to prevent & eliminate problems, are all problems eliminated? No. I estimate that I prevent about 97% of the problems by the systems I have in place (lists, supports, etc.), but problems do still arise. Just one day over the weekend, Dwane lost his checkbook (thankfully I found it), started the dishwasher by pushing the dial past where it fills with water so it was running dry (I had started it correctly and he changed it.), and he left the phone out of its charging cradle with the line open so we had a dead phone and were unable to get any phone calls. Still, on the contrast: he also filled my bike tires with air, helped me organize a bookcase and painted his trailer he is repairing.

What I try to remember is the familiar saying, "Don't sweat the small stuff. . . . And, it's all small stuff." If there is no injury, no fire, no accident, then all is well. I figure Dwane and I are both doing the best we can, given the circumstances.

Behavior Modification

In my training and experience as a special education teacher I was immersed in behavior modification. During my training I was doing some volunteer work at an agency which served individuals with significant cognitive and physical disabilities. They relied solely on behavior modification. Upon leave I suggested to the director it might be nice to blend more a humanitarian approach with the behavior modification (which seemed quite harsh to me). He responded that they used behavior modification because "it works". As I applied my skills at managing behavior of children with disabilities, I realized he and I were both right. One can use behavior modification with the focus on the dignity, well being and respect for the person (s) one is trying to help change behavior. So, here is a simplified behavior modification approach that can be used with someone with dementia.
A. Antecedent: What occurs before the behavior?
B. Behavior
C. Consequence: what occurs as a result of the behavior?
Example from my life:
A. Antecedent: Phone rings when I am outside.
B. Behavior: Dwane answers the phone and forgets to tell me there was a phone call.
C. Consequence: I miss returning an important phone call.

While there are many complicated things one can do to change behavior, my favorite strategy and the one which prevents the most problems, is to change the environment to prevent the behavior and/or consequence. Since I cannot control Dwane and his memory, I chose to change the environment and pay an extra $5 to our phone company for caller id. Then, all I have to do is check the caller id to see who called, rather than rely on Dwane to remember to tell me.

This is the same strategy I implemented when I was parent of young children. I knew parents who wanted to teach their child "no" and would speak harshly to them and slap their hand if they reached to touch something breakable. I noticed this approach and decided to make my home "child friendly" by removing unnecessary breakable items. I am doing the same with my home now. I am making it "friendly" for someone with dementia by removing, changing, adding whatever I notice will better support his freedom and our serenity.

36 Hour Day - a good resource

I recommended the book, The 36-Hour Day by Nancy Mace, MA, and Peter Rabins, MD, in an earlier posting, and I would like to say why I recommend it. Any published book has the disadvantage of being out-of-date with research by the time it is published, since we are in such a rapidly-expanding world of new discoveries; but this book is a treasure for its help with the behavioral aspects of dementia. It also gives a brief description of the most common forms of dementia, so one can learn about the differences. The book devotes considerable print space in chapter 3 to how to avoid "catastrophic reactions", and it includes invaluable tips. It is from this chapter that I got my idea of creating lists of how to work the remote for the tv and how to use the telephone. It also has a chapter on behaviors common to dementia; such as apathy, anxiety, suspiciousness. The book helps us remember that things such as apathy may not be choice, but may be a symptom of the changes in the brain.

I think it is important to remember that much can be done to improve and make smoother the life of the person with dementia and any caregivers. What works for me is noticing any areas that cause distress or stress, and setting up the environment to prevent the difficulty. I am fortunate to have a large bag of tricks from which to select by dusting off my special education teaching strategies, but any one can do it. Is the person with dementia getting his/her medication mixed up? Look for and buy a medication dispenser that will eliminate any chance of the person getting confused. Write detailed lists: step 1, step 2, etc. for important things like making a phone call. Post that information by the phone, along with important phone numbers. In my opinion, it is easier to prevent problems than it is to deal with the emotional fallout that can occur in dealing with the problem. Keep in mind ways to make life more predictable and stress-free for the person with dementia, and your life will be smoother too.

Looking for the blessings

Ah, what a good day yesterday. I walked/jogged 10 miles in preparation for my part marathon, and I made a new friend in the process. Lovely morning, and though I am a bit stiff in the hips, all is well in my body's response to the endeavor. Then an oil painting lesson in the afternoon. I am so delighted that Dwane is in a period where he is doing well enough that I can be gone for a couple hours. That is one of the blessings in his mostly horrific diagnosis: his memory is pretty much unaffected. So, I don't have to worry about him wandering off or not remembering where I am or when I am coming home.

It helps me to notice and remember the blessings in the midst of this disease. I am so grateful for the hypnosis, which seems to be what has helped with increasing motivation and decreasing anxiety. It is just amazing to me that Dwane is repairing his little trailer. This is the first project he has undertaken in functional activity since last fall. So, noticing that helps me know that we have good things in place to make the best of what his diagnosis is. The combination of medications: Namenda and Aricept, along with the hypnosis, seems to really be supportive of his well being. I am so glad.

Avoiding upsets and angst

The book, "The 36 Hour Day" has some great ideas that I have implemented for avoiding upset for someone with dementia. The detailed lists of how to use the remote for the tv and the phone are examples. Another way to avoid upset is to get the support of outside experts; such as the occupational therapist for the driving evaluation, the neuropsychologist for the neuropsychological evaluation. As caregiver of the person with dementia, you have your hands full enough without taking on the "fight" of getting the person to see his/her own limits. I purposely set up the environment to avoid upset. The lists of instructions, the rules of no ladders, the 7-day pill containers which I fill and he can then take. Whenever I notice an area that causes either him or me upset, I modify the situation to prevent the upset.

How do you know when to take the car keys?

For how long can the person with dementia safely drive? That is one of our toughest questions (the other toughest one might be when does one go to assisted living). Dwane was, as I understand most - if not all - persons with dementia, very resistant to considering he might not be able to drive. For a long time I have been doing virtually all the driving when we are go somewhere together. I was concerned about Dwane's driving, but I did not want to subjectively and arbitrarily say he could not drive. Also, I had to be careful because it is easier for me if he can run to the end of our lane for the mail, and I did not want to be influenced by what is more convenient for me. So, I made arrangements for him to have a driving evaluation by an OT (occupational therapist) who specializes in driving evaluations. It is an out-of-pocket expense of about $150.00, but it was extremely worth it. The results made Dwane very angry, but far better the anger be toward an outsider than me. I have also noticed that Dwane's first response is almost always to be angry, but then he integrates the information and deals with it. The driving evaluation results were that Dwane was still fine to drive in our rural area which is very familiar to him. (YEA!) But, that he could no longer process multiple factors, so interstate and city driving were to be avoided. The OT also gave us strategies to implement for more safety; such as, being sure to make a head check instead of just relying on mirrors. (ok, I have to say here I had been saying that for months!) The OT also suggested that Dwane do the driving and I the riding on a periodic basis to continue to monitor how he is doing.

It was a tremendous relief to have a skilled, objective opinion for such a difficult issue. I realize that the time when he cannot drive will come, but I am relieved it is not yet. The evaluation also seems to have made Dwane more aware to be very alert and to "give up" his conviction that he is still just as good a driver as he always was.

Is there a purpose?

I like a quote of Emmet Fox, "If people are troublesome, you have only to change your thought about them, and then they will change too, because your own concept is what you see." I don't think this is true only of people, but also of situations. That is why I have set my intention for the highest and best for Dwane and me and all involved. Do I think this means a cure for Dwane? There are greater mysteries involved with that than I can know. I do not know what is his journey and the purpose this disease might be for him. I heard a story once of a person who had an after-life experience. She was given the choice of remaining in the experience after this life, of returning here whole and well, or of returning here disabled. She was given a review of her life and only after she could see that coming back disabled would not serve the highest and best good of someone else, did she make the choice to come back whole and well.

I don't know what is the highest and best good for Dwane. I only know that I can hold in my intentions the highest and best good for him regardless of what happens in this disease process.

When we learned about his diagnosis and were driving back from Mayo, we made the commitment to each other that our focus would be on the highest possible quality of life now, and that remains our intention. This intention is helpful for us in the day-to-day ups and downs with this disease.

So, how about the bad days?!

Friends have said they feel they get mixed messages about how Dwane is doing. I think that is for two reasons: first, a primary characteristic of this diagnosis (dementia with Lewy bodies) is the extreme variation in lucidity and alertness - day to day and even moment to moment. And, second, I discipline myself to choose to see the goodness of life, in all respects. And I do that with this diagnosis because if I dwell in the negative, it is simply too bleak for me. But in the interest of giving a full picture:

What are the worst aspects for Dwane? The physical. The drooling, the lurching walk. He also expresses frustration about expressing himself. Remember: a person with this diagnosis is unaware of their own cognitive decline.

What are the worst aspects for me? The almost complete loss of a companion and partner, in every meaning of those words. Medical experts seems to call it a loss of alertness or lucidity, and I'm sure that is accurate. But, for me, it is best described as a collapsing in upon himself. He seems unaware of external cues and unaware of me largely. Last week he said, "those pants look good on you." I literally cannot remember the time prior to that where he was enough aware of me to notice something about me. As well as causing loss of companionship, this is also a danger. I had a biking accident on a mountain trail near our house, and it took me some time to get my bike back up out of the deep ravine. He was unaware I had been gone overly long. It occurred to me that he would be unable to get me help if I needed it, and then it occurred to me that he would be unable to get himself help if he needed. So, another layer of responsibility for me. When he was lost for 40 minutes (despite what I thought was my hypervigilance for his safety) on a cruise ship this past winter, I noticed that he has lost the ability to figure out what to do to get himself help. He seemed to have simply walked for the 40 minutes, although he was unable to tell me where he had been. He did not ask one of the many ship staff for help, he did not go to a familiar place and stay there, he did not go to where we had been headed.

So, here is a glimpse into the darker moments of what we are living.

Facilitating communication

There are many joys in my life, and one of them is easy, quick, witty conversation and connecting with another person. I treasure the moments my spouse and I still engage in fun communication, and I am aware that one of the characteristics of his diagnosis is to struggle to find the words he wants to say, to track the topic-line in communication and to respond in an appropriate way to the topic. I find he does better when he is not feeling anxious or stressed, so we put plans in place to help prevent that. Such things as: predictability, schedules, taking his medications on time. This does not mean we are rigid, but if we have social plans, I am very sure he knows what to expect, where we are going, what time, what type of activity. It is a technique I used as a young mother, telling my children what was coming up (an event, activity) and what they could expect from that event. I found that greatly lessened any behavioral problems with young children. It also helps with someone with dementia. (This may not be as effective in the types of dementia where short-term memory is greatly affected -- although I think it would still be helpful. A person may just need to inform the person repeatedly.)

We took some great classes from Jim Gardiner, Ph.D., neuropsychologist called "Sharpen Your Brain". One of the techniques we implemented after the class on attention, was to make sure we have each other's attention prior to speaking. That has helped eliminate misunderstanding and frustration.

Exciting medical news

Mayo Clinic has just announced they have a new scan which can differentiate among Alzheimer's, Dementia with Lewy bodies, and frontal lobe dementia. This is incredibly exciting, as a definitive diagnosis used to be able to be done only after death with a brain autopsy (although neurologists are very good currently of determining probable diagnosis by symptoms and neuropsychological testing).

Why is this exciting? Caregivers are so much better able to support positive living situations when they know what part of the brain is involved, what are the characteristics of the specific type of dementia, and what are some things they can expect. This is yet another reason for getting a very good medical diagnosis which includes neuropsychological testing. Who knows what breakthroughs might be next in the medical research involving dementia?!

Finances

In this time of economic turmoil and downturn for many, I want to revisit finances. We choose to hire the services of a fee-only Certified Financial Planner. (www.kahlerfinancial.com) He not only invests our money in ways we approve, he also looks at our overall financial picture. It was partly because of his influence that I got longterm care insurance several years ago. While my hope is that we will not need to use it, it is a relief to me that we have it in case it is necessary. We also have umbrella liability coverage, which is also a relief to me because I am on the board of directors of a nonprofit which has financial difficulties. It helps me be at peace that my umbrella liability policy is a protective factor for the potential mishaps and actions of others. He and his staff have copies of our wills and living wills, which they review to ensure that we are well covered with having happen what we want to occur upon our deaths and dying.

Some people have said to me that they cannot afford good financial advise. I believe that a person cannot afford not to have good financial advise. I am very good at managing my own money and went for years without a hired advisor. My life is simpler and I have more peace knowing that I have hired expertise to supplement my own expertise.

A good day/week

ah, Friday. What a good week. Yesterday I ran/jogged for 5 miles and realized I need to pick the pace up a bit for my upcoming partial marathon. Dwane is having a period where he is functioning so well that he is repairing an old pull trailer. It is wonderful to see him in purposeful activity. Thank God for what resources there are to support his wellbeing: hypnosis, Holy Tea, and the current medications. I don't think I have written about Holy Tea. An alternative health practioner we go to has recommended drinking 2 ounces of Holy Tea every day for 30 days, with 10 days off, and then repeating that cycle ongoingly. He says that Holy Tea is the best thing he knows for removing toxins from the brain. This tea can be found online: It is Dr. Miller's Holy Tea and is a combination of herbs, to include holy thistle - hence the name. So, while acknowledging we are dealing with a noncurable and progressive disease, we are still implementing every reasonable thing we can. (we only do that which we can find some evidence is effective).

Hope

Two people have said to me recently that they did not know Dwane's decline was as much as it is. That has caused me to wonder if I am in denial or not forthcoming, and I don't think so. A spiritual reading this morning said, "Whenever things go monstrously wrong, the first casualty is always hope." I think that is true. I see clearly what we are dealing with; I know it is progressive and noncurable (at this point medically); and I consciously choose not to think about or talk about it very much. Because I need hope, and because I believe that what I focus on is what will increase and/or be consuming. I want to focus on what is good in our lives, and that is plentifold. I think it is a fine line for both Dwane and me to acknowledge his diagnosis with candidness, while focusing on what is right and good and positive.

Fun

Fun. It seems to me that fun could be reimplemented into my life only as I created enough understanding for myself in what could support Dwan's cognitive decline, and implement the support needed to prevent problems in the areas of decline. Once I did that (and I must say it is ongoing. I continue to monitor what Dwane has trouble in and make changes in the physical environment to prevent those problems.), then I could look at fun in our lives again. We have created a neighborhood get-together every other week. We are part of a group of interesting people who meet monthly to have fun together. We are Netflex members (thanks to a gift from our son-in-law) and enjoy movies together.

And for me. Now that I have dismantled most of my professional life to address this transition in Dwane's health, I am rediscovering some fun that I have not done because of time constraints and/or the stress of this past year. I am taking oil painting lessons again, which I just love. I am writing again, which I just love. I am training (at age 65) for my first marathon with my son, daughter, grandson and daughter-in-law. I am exercising every day, and I allocate time every day for my spiritual life. I am having fun cooking great meals. My garden is doing very well, even in this high altitude. I relish in going out to pick fresh lettuce or other produce for our meals. I have a monthly massage. My life is balanced and serene, and I am so grateful.

respite care

It just occurred to me yesterday how I can implement respite in my life. I have hesitated in checking in with hospice of similar care, as we just are not to that point yet. But then I find I cannot be gone more than a couple hours and I am anxious about his safety. So, I had the idea to hire a person to come in and clean our house and do errands one day a week, so there is someone here to monitor safety while I am free to do things away from the home. It will be less expensive than skilled care, and I think it will work great. Someone to do tasks for me, fix his lunch and be aware of his safety. What a relief.

My daughter and son-in-law provide respite for me with my son-in-law taking Dwane on outings, but this hired arrangement can be every week during the day. I also do not want to over rely on the kindness of my daughter and her husband. They have full professional lives and lots of commitments. So, this is a perfect answer for me.

Support for the caregiver

It seems as I experience this myself and look around at others who are giving care to someone with dementia that it is critical to have enough support for oneself. Some people find a therapist or support group helpful. What I have implemented is a spiritual director/life coach. This relationship helps me from becoming discouraged and helps me to find hope for us in this situation. One I can unequivocably recommend is Richard Kiefer at http://www.sojournersguide.com/. Another is Shirley Edwards at 415-215-5018. Whatever support one needs, it is imperative to find it.

Optimal Physical Health

Physical health, continued from yesterday. Physical health consists of several things, and I personally think our physical health is also dependent upon our spiritual and mental health. Diet, exercise, sleep, fun, balance among activities, & attitude all contribute to our physical health.

Diet: New research from the Archives of Neurology reveals that the Mediterranean diet reduces a person's risk of experiencing dementia, as well as slowing the progression of dementia. Eating lots of vegetables, fruits, nuts and legumes (beans & peas), with limited meat and alcohol reduces developing cognitive impairment by 28%. It also lowers the risk for fully developed Alzheimer's disease by 48%. It is certainly worth trying this diet to sustain health and to even possibly restore health.

Exercise: I try to exercise for 1 hour every day. This includes riding my bike, walking/jogging, snow shoeing, cross country skiing, hiking, kayaking. I also include weight lifting 3 times per week. Adding weight lifting has dramatically helped eliminate shoulder pain by increasing strength. Stretching every day has dramatically helped with low back and hip flexibility and comfort.

Sleep: According to James Maas, professor of psychology at Cornell University and author of Power Sleep, 3 out of 4 Americans are sleep deprived. Most people need about 8 hours of sleep and are getting just 6.5 hours. Maas says that someone who gets 6 hours of sleep a night has worse mental clarity than someone who has had 8 hours of sleep and has blood alcohol levels that would equal or exceed those for driving while drunk (0.10 bal). Because someone with dementia with Lewy bodies usually has sleep disorders with the disease, Mayo Clinic recommended Dwane take melatonin every night, starting with 1 pill and going up to 4 pills as needed to alleviate the dangerous acting out of dreams.

Hypnosis and dementia?!?

Within the Physical/Health aspect of the Wheel of Life, we went to one of the best-of-the-best for our neurological evaluation: Mayo Clinic. They concurred with what our wonderful family doctor had already implemented, the medications: Aricept and Namenda. In recent medical research these two medications together are considered to be the best defense against dementia that we currently have. They are not a cure. They delay the progression of dementia; and the current thinking is that the earlier they are started, the more effective they are. That is one reason it is so important to get good medical attention as soon as one is rightfully concerned.

Hypnosis: It was my daughter-in-law who called my attention to an article in the Prevention magazine citing research in England that has found hypnosis to be more effective for the behavioral aspects of dementia than the current medications. And we have found that to be so. We go about every 2 weeks (in the research from Liverpool the hypnosis was every week), and it has dramatically improved motivation and lessened anxiety. Cognitive lucidity is also improved, although this, of course, fluctuates.

Tomorrow: physical health for the caretaker/spouse.

Finances

Finances were an area that needed to be addressed in this dealing with dementia. Both Dwane and I have always been very good managers of money (our financial advisor says we are in the top 5% of the population in how well we manage money), but with the checkbook lost once, I was concerned that we needed to protect our assets. We discussed it and we made the bank account with most of our money the stay-at-home checkbook, and we created a new bank account with limited money in it for the checkbook Dwane carries with him.

We have also created Living Wills, regular Wills, and we will do Power of Attorney very soon. There is not the need for it yet, but our attorney feels it is better to do it when both people are cognizant and agreeable to doing it.

Creating a balanced and serene life

I have found the Wheel of Life we use in Life Coaching to be a good guide for me in how balanced I am in my life. The Wheel of Life contains these spokes: Physical Environment, Career, Money, Health, Friends & Family, Significant Other/Intimacy, Personal/Spiritual Growth, and Fun. I will write on one of these areas a day to describe how I am meeting our needs in that area.

After getting the diagnosis of dementia with Lewy Bodies, I first addressed the Physical Environment. Taking out and brushing off the skills on managing behavior that I have taught in workshops locally, regionally, nationally and internationally, I began to set up the physical environment to prevent problems. While there are many aspects to shaping the behavior of others (behavior modification), the one I most value is preventing unwanted behaviors by setting up the environment to eliminate and/or prevent them.

I wanted to eliminate the frustration encountered when he was not able to use the tv remote, so I wrote detailed, numbered directions for its use and we keep it by the tv. I did the same with how to use the phone and access voice mail. I listed in large print phone numbers he may use. We have a rule now of no ladder use unless we are both home. We paid for him to have a driver's evaluation by an Occupational Therapist, so that we would know from an objective source if he was still able to drive. We have decided to stay for now in our current home because it is rural, and he is able to drive here without the distractions and processing of multiple other factors and vehicles. I read, "36 Hour Day" by Nancy L. Mace, M.A. and Peter V. Rabins, M.D., which is the best book I have found to help one cope with living with dementia. I implemented some of their suggestions to prevent upset. I have noticed that Dwane does much better if he is not anxious or stressed, so I planned our environment to prevent things that would cause either of those menal states. Our lives are much more serene with preventative strategies in place.

A doctor's column in the newspaper yesterday described dementia as a decline in cognitive functioning, with memory loss as a prominent symptom. Memory loss is not the primary symptom of dementia with Lewy Bodies. Dwane can still retrieve any date of most any event. He is a more accurate reporter of dates and facts from the daily newspaper than I am. What he does have difficulty with is multiple-step tasks and processing and expressing verbally. He has trouble navigating the remote control to the tv, dvr and satellite dish. He has difficulty reliably accessing our phone voice mail. He used to be very good at fixing things, but was unable to fix our snow blower all winter --- and then, behold, one day this summer, he fixed it. Visual hallucinations and the sleep disorder where one acts out one's dreams are unique symptoms of this dementia, along with the cognitive decline and Parkinsonian symptoms of muscle rigidity, balance difficulties, slowness in walking. I will describe in future entries the systems I have put in place to help prevent these difficulties. These skills are ones I learned in teaching special education: behavior modification plans. I am a firm believer of prevention being the best approach to any behavioral difficulty, with setting the environment up for success as the most optimal approach.

The most difficult aspect for me in living this this dementia is the extreme variability in his alertness, his lucidity and his comprehension. The other most difficult aspect for me is his unawareness of his own decline, which is apparently an aspect of frontal lobe dementia.

What I have discovered in living with a spouse with dementia is 3 priorities:
1. Get good neuropsychological testing so that you both know what you are dealing with.
2. Arrange for enough emotional support and fun for yourself.
3. Arrange the house/setting in ways that prevent problems.
4. Find out what resources are available to support both of you.

I will discuss these more in subsequent entries.

My intention in creating this blog

My intention in creating this blog is to find meaning and purpose in this chapter of my life and to assist others living with someone with dementia by sharing what I learn. The goal and intention my husband and I have set is to have the highest possible quality of life we can create. I will share my experiences of living with and adapting for a person with dementia.

Is it Alzheimer's?

The question I am most asked regarding dementia is: am I getting Alzheimer's? I feel some qualification in answering this because of my professional training, but more so because I have been living with Dementia with Lewy Bodies for many months. Most people have not heard of this dementia, but according to Mayo Clinic information, it is second occurring only after Alzheimer's. Recognized in 1996 as a distinct dementia, Dementia with Lewy Bodies is a combination of the dementia associated with Alzheimer's and symptoms of Parkinson's.

As we age we all have periodic trouble with remembering the name of something or in retrieving the word we want to use. Dementia is more than that. Dementia is forgetting how to put gas in one's car even though one earned his way through college working in a gas station. If you or someone you love is forgetting familiar tasks, have your family doctor refer you to a neuropsychologist. The current thinking is that the sooner appropriate medications are started, the more effect they have in slowing the disease.

In this blog I will share what I have found that works best in living graciously with someone who has dementia. Join me in our inquiry for the best treatments while we await a cure.