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Friday, April 2, 2010

Alzheimer's Dementia Caregiving -- Learning to Deal with Difficult Behavior


I had to learn to deal with that brain. To accept that mom's brain works different. This different brain requires me to adjust my communication. It required me to learn new and different ways to deal with the behaviors that come with Alzheimer's disease......
By Bob DeMarco
Alzheimer's Reading Room


On Monday, Dotty and I had our only "long" day in the Dimebon clinical trial.

As the patient, Dotty would be receiving two blood tests about 2 and one half hours apart. In addition, she would be receiving memory and behavior testing, and a complete physical. All for free as part of the clinical trial.

While I am here I'll mention, it might seem that the commitment to a clinical trial in terms of time is enormous. This is not the case.

In the case of this one long appointment, we are exchanging our time for some serious benefits. Mom receives the mental tests. These mental test are important and enlightening -- they give me a clear understand of where we are with Alzheimer's. This both helps me deal with the situation and makes me feel more confident.

The series of medical tests (complete physical) give me comfort. If nothing is happening it comes as a relief, and if there is a problem we are going to catch it right now.

As the caregiver in this equation, I received two thorough interviews. These interviews cover my own impressions and observations, and a long series of questions. The pattern of the questions and the kinds of questions they ask really "sharpen" me up. They put memory and behavior into a new context. This helps me to know the kinds of things I should be looking for at home to best determine and understand what is going on with mom. Big benefit.
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I knew going into Monday that it was likely that Dotty would get "uptight", upset, possibly angry, and would likely start to withdraw.

The night before the appointment I emailed Max and mentioned to him that I was anticipating some behavior problems; and that, my goal was to deal with the problem effectively and minimize the after effects to the degree possible.

After I emailed Max it dawned on me that I had come a long way as an Alzheimer's caregiver. Instead of sitting back and waiting for the "hurricane", I was actually preparing for the "hurricane" in advance.

As part of the preparation I started to envision all the kinds of things that could happen. I had to get myself mentally prepared. I knew there would be problems. So I had to gear up mentally for any eventuality. My biggest fear going into the appointment was that mom would end up going into a shell for a day or more.

Mom has not gone into her shell in years. But back in the old days, mom would go into her shell at least twice a week. When mom went into her shell she would go into her room and refuse to come out for as long as 24 hours. This would hurt me -- bad. My stomach would hurt and no matter what I would try she would not come out until she was ready. Interestingly, after a time I started to notice there were clear patterns associated with this behavior.

One pattern that really had my attention was when mom would go into her shell -- into her room -- on Saturday night and not come out until Sunday night. This might sound hard to believe but mom would come walking out around 7:09 PM, plus or minus a few minutes, every time. Most of the time when mom would come out she would act as if nothing had happened. Sometimes she did look a little bit out of it.

As it turned out, observing this pattern was one reason I started to make a breakthrough with mom. I didn't think I could change the pattern. Why I did think I could do was change the behavior leading up to the episodes and hope that I could break her of her habit of going into her shell and refusing to come out for a long period of time. I did it.
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When we arrived at Brain Matters Research they took mom for her first blood test, and then for her memory and behavior testing. I went into my first caregiver interview. My interview went longer then expected and I was already starting to get worried. When the first interview ended I said immediately, I need to check on mom. They took me to where she was.

I was at least 20 feet away and I could see I had my work cut out for me. Mom had what could best be described as her "I've been dipped in shit" look on her face. As soon as I got close she said --" I know what you are up to". Not, I don't know what your are up to, instead I know. This means mom thinks all these tests are in preparation for me to put her "away", into a "home".

Somehow, I didn't get worried, I didn't get uptight, in fact I was feeling very calm. I took mom's hand and explained to her she was getting a physical. I explained I wanted her to get a physical so we can be sure there is nothing to worry about. I held her hand and spoke to her in a very calm voice. Surprisingly, I felt confident. I was worried because mom wouldn't look me in the eye. When I tired to look in here eyes she turned her hea away. This is always a bad sign. A sign that the situation will worsen if I don't take immediate action.

The difference now, as compared to years gone by, is that I know what I need to do. I know what works and what doesn't. I learned this via trial and error and a lot of failure. I now feel confident in this situation. Nevertheless, it is worrisome.

Its time for mom's ECG and they want to whisk me away for my next interview. I tell the clinical trial coordinator not yet. She immediately understands. She tells me to come down to her office when I am ready.

When they get done with mom I take her in a little room and start talking to her. Unlike in our earlier encounter where she wouldn't look at me, wouldn't look me in the eye, she is now starting to look at me as we talk. I keep patting her hand and reassuring her that its all good. I guess mom trusts me. She comes around nicely. When she finds out there are more tests and that I am leaving for a while, she is not a happy camper. They assure me mom won't be left alone even for a minute. Didn't quite work that way.
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I go for my second interview. They ask a long list of very specific questions. Some of these questions require come serious thought. I mean they want to know some tiny little details. I have to think. While answering these questions I start thinking, I am really going to start paying attention to all of this stuff at home. Maybe I can learn something that will help me do my job as an Alzheimer's dementia caregiver better.

Interview over, time to go find mom. On my way I am hoping that mom didn't fall into the big black hole. If she does, this means 24 hours of gut wrenching stomach ache and the feelings of helplessness.

When moms sees me she says as loud as she can without shouting, "I am never coming here again". She proceeds to inform me that she is never ever ever coming there again. I hold her hand and start to talk her down. Calmly. I tell her once again about all the benefits we are receiving. How great this day is for both of us.

I want to point out something here. In these encounters when mom is upset, angry or bent out of shape, it won't do any good to address what is really bothering her. In other words, I know mom is feeling insecure and is worried that I am putting her "away". Addressing that issue would only make matters worse. I tried this in the past. The only thing that happens is that mom just gets more convinced that she is being lied too. The goal is reassure mom that all is well, not to discuss an issue that is going to make her more insecure.

So as I talk mom down, I start telling her about how we are going out as soon as we are done. I talk about all the great things we are going to be doing. I continue to tell her how great this day is. It really doesn't matter if mom fully agrees right now, what is important is I have to first get her down off the edge of the cliff. I am trying to reassure mom that nothing is changing. I paint a very positive picture of our life. Life for both of us.

We are almost done. One more blood test and the urine sample. Meanwhile they already let mom go to the bathroom, so I tell them they won't be getting a urine sample today. I get to see the new, to me, urine collector. I like this gizmo. Mom gives em some more blood. We are done.

We go out to the front. I work on mom with some more positive reinforcement. She can't wait to get out the door.

By the time we get to the car, I am starting to think this just might work. I ask mom where she wants to go to eat. As usual she has no idea. I pick.

By the time we sit down in the restaurant not only is mom off the cliff she is not even mad. She is looking at me. I smile at her, she smiles back. This is a miracle. I tell myself I have to think about this tonight.
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I did think about it. On one hand, I am somewhat amazed. On the other hand, I am not amazed.

I do think I just graduated to a new level of Alzheimer's caregiving. It would not have happened this way a year ago.

I ask myself. Is it the overall pattern of behavior I am establishing with my mother? Is it the sound of my new found voice? Is it the look on my face? Is it the fact that I am now cool, calm, and collected when I find myself in these kinds of communication situations with my mother? Is it my learned ability to focus on the positive and not take my mother deeper into her fears?

Most likely all of the above. Can there be another reason? Yes, there can. I'll get back to you on that one.
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I am coming to believe that you can find ways to communicate effectively with someone suffering from Alzheimer's disease. There were times when I almost gave up on my attempts to accomplish this mission.

My own background with communication helped me for certain. Learning about what Judy Berry was accomplishing at the Lakeview Ranch led me to my belief that there is "more possible" than most people understand. Learning by trial and error that there is "more there" was the fuel that kept me going.

I am a little surprised about how well things turned out the other day in trying circumstances. I knew my mother would get upset and try to go "turtle" on me. I gently asked her not to do it, in my own new found way. She did not go away.

I have to say, I am feeling very good right now.

Dealing with the difficult behavior that comes with Alzheimer's disease is not easy to do. The first thing to do is to accept Alzheimer's. It is there day after day after day. I don't see Alzheimer's as the enemy. If I did that would be the same as seeing mom as the enemy.

Mom's brain is sick. As a result, I had to learn to deal with that brain. To accept that mom's brain works different. This different brain requires me to adjust my communication. It required me to learn new and different ways to deal with the behaviors that come with Alzheimer's disease. It did take me years to understand that much of the problem comes from the way mom's brain makes her feel. It makes her feel confused and scared. Insecure.

So I guess you could say I had to become mom's security blanket. Therein lies the lesson of the day.

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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,300 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room