PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Sunday, April 19, 2015

What to Do, What to Do?

Susan, in her blog, describes: On Christmas Eve 2011, shortly after I began caring for Mom full time in her own home, we had a scary fight. We were in her big red brick house on the hill, eight miles from the nearest town. She thought she was in a hotel, and she wanted to go home. It was 3 a.m., the dead of Canadian winter and -16 C outside. We argued for several hours.In the end, she hit me with a large flashlight and then tried to break a window when I blocked her from getting out the door.

Susan then poses 20 questions asking you how YOU would react if someone was trying to do to you what we often do to people with dementia, even if in the name of protecting them.

Click here if you want to see Susan's post. Opens in a new window.

This is my reply to Susan:

The answer to most of those questions, if it was me in mom'e shoes, would be to REVOLT, probably fight back, try to escape, and maybe become violent (like mom did.)

My guess is that the situation was NOT your fault. You probably had no control over the situation and I am not sure what I would have done in your place. Discussion doesn't always work. Rationalizing doesn't always work. Lying doesn't always work (while sometimes that is a good thing to try.) Distraction doesn't always work.

Her reply to me:

You are right it was not my fault in the sense that I was doing the best I could with the knowledge I had under extraordinarily difficult circumstances. But my behavior added fuel to the fire. Not intentionally of course. So it is with many caregivers natural and professional who are not trained in skills, tools, techniques that help rather than hurt the situation. That's what I mean by my fault. I mean it not to blame, but in the sense of one thing caused another...Thanks for helping clarify :-)

My reply back to Susan:

To be honest, I am not sure most caregivers (professional or other) are trained in skills, tools, techniques, etc. Since each situation is different one must "go inside oneself" to tap what they know about the person they love and try to discover what might work.

I might add the FORGIVENESS of self is always a good step. I learned by doing, I learned along the way, I learned what NOT to do. I am not proud of some of the things I did but I have forgiven myself now. I know Gregory has forgiven me and even in the heat of a bad situation, after I apologized, he would tell me it was OK. Once he said, "Michael, I do not expect you to change, just be here for me!" How is that for forgiveness?

Now there are several techniques I use when Gregory gets upset, although he gets upset in a vague, nondescript way. I cannot tell what he is upset about. One thing I do is try to comfort, hug, pet, kiss. Offering him a cookie or pretzel and popping it into his mouth help distract. Another thing I do is agree and nod or utter things like "Ah. Hummmm. Huh." 

If he is still upset, I tell him "I have taken care of it. You do not have to worry." He will look at me strangely and I will repeat, "I have taken care of it. Everything is arranged. You have nothing to worry about. Everything is good. Everything is wonderful. (Accentuating the positive.) He will finally look me square in the eye and say, "Really?" I will assure him to the affirmative. He will sigh, release a breath, and say something like, "Oh good." And the crisis passes. 

Sometimes just waiting quietly and letting him rant helps. Sometimes a shout, like "Gregory now stop that" snaps him out of his anger. And finally: lie, lying is a blessing in disguise.

With your mom, if I was in that situation and discussion, rationalization didn't work I would try: passage of time, food, distraction, postpone "going home" until after dinner, help her pack and then talk about leaving tomorrow.

Perhaps I would stand outside with her in the cold (making sure she did not run) and we would "realize together" that it is too cold to act right now. If she was verbal I would ask questions like why do you want to go home, what is the matter with this lovely hotel?

Gregory has been non-verbal for a long time so I am aware that words do not work with him. As I do with Gregory, I would always be aware of possible violence and try to avert it. Stay out of hitting range. Secure blunt objects at all times? Not let him grab my hands, arms, or body. 

What I would not do with Gregory or mom is argue, get angry, threaten, tell her the consequences of the cold, continue to convince if I was not winning, try to rationalize because that is not what the person with dementia needs.

Enough rambling?

1 comment:

  1. Thanks for the links and the sharing and yes, you are so right - each journey is unique, each person is different :)


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