Responsive Behaviors

On my friend Susan's blog, she received these comments which put violence and aggressive behavior by persons with dementia into a better perspective:

I am the CEO of the Alzheimer Society of Chatham-Kent in Ontario. Having worked with people with dementia for over 20 years, I have learned so much but also acknowledge that there is so much more to learn. Every day our clients and the staff from our Day Program, Respite Program or Counselling Program reveal something new that needs to be considered when giving care.

If you would be so kind as to indulge me, I wanted to share with you the terminology we use for “aggression” and “violence”. Since those two words immediately bring images and thoughts which put those with dementia in a negative light, we have come up with a term: “Responsive Behaviours” which translated means “all behaviour has meaning.” This fits perfectly with the questions you recently posted on your website. So instead of using aggressive or violent, we say the person is exhibiting Responsive Behaviours which may be caused by environmental or medical needs.

Good Advice, Late in Coming & Easier Said ...

I subscribe to a number of memory care facilities e-mail blasts and on line support. (I am in the process of un-subscribing to many of them as they have become irrelevant.)

The following came in today and it did make me feel a little guilty. If I had read this prior to Gregory's psychotic episode would I have acted differently? Was I too demanding of Gregory with expectations for self-help set too high for his abilities? 

But guilt aside, I don't think so if only because most often he would figure out what to do without my help allowing him to maintain a sense of independence. Also, the incidence of his getting overwhelmed and upset and out of touch had increased exponentially over his last few weeks at home. He needed constant care and attention and often refused that care and attention.

However, it does make one think... It also makes it seem easier than it sounds.

Does your loved one ever seem to "lose it" over nothing? Overreactions to otherwise ordinary requests or events -- crying, cursing, pacing, or lashing out physically or verbally -- are called "catastrophic reactions." They can befall anyone with dementia and can be upsetting, even frightening, to a caregiver. One common cause: too many competing stimuli. If a room is noisy and the person is feeling rushed or is dealing with other strong emotions (embarrassment, frustration), and then tension spills into an argument, the result can be assorted behaviors that overwhelm the person and his or her ability to react more typically. Hard as it may be for you to stay calm, it really helps. If you can guess the trigger, remove it: Change the subject, change the activity, turn off the radio. If the person is particularly worked up and it's safe to leave him or her alone for a bit, do so. When things seem slightly calmer, forget it happened and then distract your loved one with a favorite activity or snack.

And then to end of a frightening note, I was talking to the husband of the daughter of my step Aunt Elaine. He is a rabbi and shared that in his congregation, a woman with Alzheimer's stabbed her husband to death with a kitchen knife, thinking he was an intruder in their home. Not to lighten the horror of it, how do you follow that one with a favorite activity or snack.

A Turn of Events

As you have been following Gregory's continuing journey with Alzheimer's, you will be aware that within the last few months the journey has been getting increasingly more difficult. This last two weeks has been very difficult with his having crying bouts, major confusion, restless nights of sleep, more difficulties eating, etc.

Up until now the Alzheimer's seems to have provided a buffer allowing him to be shielded from the day to day skills and memory losses and to live a calm, happy, contented life. That has changed during the last two weeks with increased bouts of depression, upset, crying, confusion, aimless wandering, defiance, and some minor aggressiveness.

The last week has seen periods of my not being able to comfort him, calm his upset, direct his activities, etc. It is as if the Alzheimer's has been running out of control. Up until now I have been able to support Gregory is a way that helped him keep calm.

This morning, after three very difficult days; he would not be calmed, was very angry, would not let me help him. For lack of better description he turned his discontent, frustration, and hatred on me, wouldn't let me come near him, didn't think he could trust me, and became fairly violent. (Obviously I did not take this personally knowing what Alzheimer's can do!)

The measure of taking action was "I was afraid for him and myself" so I called 911. Not long after police officers, paramedics, and an ambulance crew were at our door to help. Interestingly enough Gregory was relieved that someone else had come to help protect him from me. He cooperated with them getting him on a gurney, into the ambulance, and off to the emergency room. I followed in my car.

When I got there he was calm, but my arrival excited him again. They gave him a sedative to help calm him down, I left the room (knowing he was in good, caring hands,) and routine blood and other tests were done to rule out extraneous infections and other causes for the spike in "craziness." All of the test results are not yet back.

I am currently back at the condo for a few hours quiet time, Gregory is with his Companion Alaksh and was happy to see him, Gregory isn't as upset with me right now, and he will be in a regular room over night at the hospital with a "sitter" from 11:00-7:00. Further observation and planning will take place tomorrow.

I'll keep you in touch.

An Apology

I apologize for being impatient.
I apologize for loosing my temper.
I apologize for raging at you.
I apologize for being violent with you.
(Read less than kind. Read abrupt.)
I apologize for saying unkind things.
I apologize for being mean.

I love you, never doubt that.
And I know that you love me.
I just don't love myself right now.

I took a vow of silence yesterday and for a day or two. This may seem like being melodramatic but if I am going to cope with Gregory's continued decline, especially his current digestive illness, I need to get a grip on myself and be the kind, loving, gentle caregiver partner that I know I am.

I used the above apology and explained that I would be here for him, to help him, to love him, but that I was going to take a vow of silence because that would prevent me from getting upset and therefore upsetting him.

If I can't show or demonstrate it, I will do what he needs done. This will help me avoid having to use words. I will not need to apologize for the above listed reactions that I have been working at controlling.

Just now he brought me his glass of water, ready to take his pills. "Is this enough?" he asked referring to how much water was in the glass. Bringing him with me, I took the glass into the kitchen, filled it with more water, said not a word. He headed back to the bedroom. I tapped him, gestured at the now full glass of water and he got the picture. Success. This time.

With my vow of silence, I have been more aware of talking to myself in my head. Perhaps this will lessen the time between the triggering of an emotion and my reaction.