Saturday, June 24, 2017

Part of your world

I've been taking some well-deserved time off from my studies to rest, reflect, and recharge. As I ponder the various facets of my life, I find myself thinking about the people in my life and what they mean to me. I try to put myself in their shoes to empathize better with them, and when I got to my mother, I found something quite distressful.

My mom's life sucks.

She has dementia. All of her life, she always looked at folks with dementia and told us, "If I ever get like that, take me out in the field and shoot me." And now she has dementia. And she is watched, twenty-four hours a day, seven days a week. And she is medicated if she gets unruly. And she feels like she is alone: even though people come to see her on a regular basis, she doesn't remember that. She only remembers the last fifteen seconds.

Image "Crying Old Lady" by
imagerymajestic at
If ever anyone lived in the moment, it is a person with dementia. However, feelings - even if someone doesn't remember the reasons behind them - remain. The feelings affect mood, and can make a person with dementia profoundly depressed. Or anxious. Or angry.

And what makes the feelings? Thoughts lead to feelings, even though the thoughts are no longer remembered. And words - whether spoken by the person or by those around them - create the thoughts. Combined with core beliefs about oneself - things one tells the self through decades of habit - a person who has dementia cannot reason themselves out of those feelings. Reasoning is useless. For someone (like my mom) who has prefronto-temporal dementia, the ability to reason and to make decisions and carry them out is absolutely GONE.  All that is left is the lizard-brain ... the limbic system ... the one that lives totally in the present, that is influenced by words and thoughts but that doesn't remember them; it just feels what it feels. 

So for those who think that it doesn't matter what they say when they visit a dementia patient because "they won't remember what i say anyway", think again. Their MIND may not remember, but their FEELINGS remember. So trying to convince them of the rightness of something about which they have believed all their life is wrong will serve only to frustrate and upset them without knowing why. And after the visitor leaves, it is the staff who have to deal with the fallout: the patient becomes agitated, distressed, depressed, anxious, or whatever, and needs to be medicated more just to make them "manageable." 

So - dear readers - leave your arguments and your opinions home when you visit a person who has dementia. Learn to enter their world - the world of the continual present - and even when they bring up your pet topic, refrain from discussing it. Distract the person toward the positive (not YOUR idea of positive, but THEIRS). If that means lying to them and telling them that it won't be long before they will be going home, then do that rather than tell them that they're going to a nursing home.  To many, including my mom, a nursing home is a horrible, torturous place where people go to be forgotten and to die alone. You can't convince her otherwise; it's too deeply ingrained. Don't even try. 

Phone them. Talk to them, let THEM talk. If you can't physically be there, phone them, send them cards and letters (happy ones!) and little gifts.  Do it often. The hospital / nursing home can be a lonely place. Don't forget them.

If you can be there, then BE there for THEM.  Play cards or board games with them. Watch TV with them. Encourage them, compliment them in every way possible. They are no longer part of your world; accept that. Be part of their world. Enter THEIR reality, the reality of seconds. Not days, not hours, not even minutes, but seconds. Leave your preconceptions and your grief at what they have already lost, and what you have lost with it, at the door. You are there for that person, not for yourself. You are not there to talk anyone else down or to win any arguments.  You are there to brighten their outlook. You are there to make it easier for that person (and for the staff who look after that person) to live a little more pleasantly. 

That is the way you visit those who are infirm, who live inside the prison of their own mind. Don't judge them. Don't judge those they love. Talk only of pleasant things, things that are pleasant for THEM.

Just be there for them, whether in person or not. Just BE.

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