A response to a recent blog said. “My mom lives with my husband and I, and we are having difficulty because she has just enough dementia that she needs help with some of her decisions. She is very stubborn and independent. Now I am having to be the parent. Do you have any books that deal with this situation? If so where and how much. I’m desperate.”
Since this woman is not the only reader facing this kind of a situation I decided to answer the letter here instead of at the end of a blog where fewer people would see it. Hope it helps both the writer and those who read along.
Jackye, There are several books that deal with this situation. Some more completely than others and, at the end of this article, I will list a couple that I think do the best job, but may I add a few thoughts that I hope will be of some help.
Early stage dementia can be very frustrating to say the least. One lady put it best when telling me about her husband. She said, “The on and off dementia is maddening. My kids came over today and he knew all of their names and probably could have remembered their birthdates. But when I handed him the milk to put in the refrigerator, he put it in the stove. You just know he does some of that just to bug me.”
This is also the time when they are just lucid enough to almost know what they need and want but still not have the ability to make decisions that make sense. I wish there were medications that would either restore their mental capacity or make the caregiver tranquil in the storm.
As the roles change, and the change is inevitable, we loose the ability to communicate and must learn how to do so all over again. It is a new world. The aging loved one feels their independence and control slipping away and fight over every scrap as they pass. This makes them more stubborn and hard headed than before and anger seems to be right under the surface ready to pounce at any provocation. It is hard to not take this personal and react.
The new role leaves the caregiver feeling strange and uncomfortable as well. Suddenly all communication feels awkward and strained. We find it hard to be in the room alone with the person. Where once we could talk for hours, we now have a hard time with five minutes. If we do not understand that these feelings are normal, we tend to think we have stopped loving the person and are some kind of a horrid individual.
I cannot make these feelings go away, nor can I offer some magic cure that will make communication suddenly ideal. When it happened with my father and me, I chose to confront it head on and told my father I was having a hard time being around him. To my amazement I found out he was feeling the same way about me. We did not cure the situation in that conversation, but we exposed the problem and both of us worked at making the other one feel more comfortable.
The second thing I did was find a place where I could express my frustration with safety and confidentiality. I don’t know why having a place to explode and complain helps clear our minds and somehow strengthen us to go back and care again, but it really does help.
Reading can also help and the two books I would recommend are
Share My Lonesome Valley: The Slow Grief of Long-term Care which I wrote and Please Take Me Home Before Dark written by Billie Pate. These can be found and ordered by clicking on the resources page in this blog or at www.InSightBooks.com. In addition, you can email OrdersAndInformation@InSightBooks.com , or you can call 1.800.658.9262. Good luck.
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Doug invites you to log in and post comments at the end of each blog entry. He looks forward to hearing from you. Any of Doug's books, CDs or DVDs are available at www.InSightBooks.com.