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.

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.