Posted: Mon, March 03, 2014 | By:
I believe I need to clarify for a lot of people what dementia is, once and for all. (Not that I often get misunderstood, not at all, and I always explain happily for anyone who is interested in my experience with Alzheimer’s…)
This explanation is for everyone I know, but especially younger people with parents who are suffering from dementia, who are misunderstood or mistreated. Because that’s wrong. I will always work for people who need help in this area - both the sick ones and the family around them who fights for their rights in the society of Sweden.
This explanation is for those of you who think you know, but think wrong. It is also for those of you, who do not know, but want to know. And lastly, for those who know, but no one understands you.
Dementia is a brain disease. I call a person who suffers from this disease ”demented” - you may think this is wrong, but it’s also right.
The brain cells are dying, the brain atrophies and the body too, because the brain as everyone knows controls the whole machine. If you close down one machine in a factory that is important in the process, the whole chain stops working, right? The same thing happens if you suffer from some form of dementia (most common are Alzheimer’s, Front temporal dementia, Lewy bodies, etc.).
So, what happens then? You might lose track of where you put things, say strange things in wrong sentences, say wrong words, do things you do not “usually do, eat things you usually don’t like, talk about memories that you know to be false. You get maybe a little introverted if before you were very social. You will probably lose your remote control some days, but maybe not more often than now, but the different aspect is… you might not remember what the remote is for.
You might be afraid to do things alone, so you need your friends or/and family to help, you are not crazy or mentally disturbed, you have an illness. Your brain is sick. When a healthy apple shrivels into a snufkin… it’s the same illustration, the brain rots… Knowing that, it’s not surprising that one finally dies, in a rather slow process. The brain is not controlled by you anymore, it does as it pleases, the brain does not know how it used to do things, and you lose control over yourself. The power we think we have is lost incrementally and eventually you are powerless, trapped in your body with a brain that is not working as it should. The factory closed down a little at a time. But the heart, it does not stop beating. The feelings will still be there, believe it or not, you can talk to a demented person, you can feel happy together, laugh and do things, maybe other things, new things, you just have to face the other way and be creative.
How do we need to act, if you are a child or married to someone whose brain is sick? First we try to get everyone else to understand what it’s about, so they can help someone who is sick, for dementia cannot be seen on the outside at first, you can hide it pretty well. I know many people who have parents where it’s embarrassing; but if anything is crazy that’s it. Come on; are we that afraid of reality?
It’s a brain disease, you die, you cannot get better, it cannot be cured, it’s like HIV was before, you get worse and then you die, but maybe soon we can cure dementia, or at least be able to live with the disease as you can today with HIV.
Here is some advice: do not “talk over” the demented person’s head, the person is still there and can both see and hear you, be around the person, be close the person, if the person wants to, act like normal people do with friends, warmth and touch are important for everyone, enjoy life, be in nature, listen to music, dance, do things the person always wanted to do but never did, do simple things, do not take for granted that the person does not understand anything anymore, you may be the stupid one, if you believe that a demented person no longer remembers anything or feels anything anymore.
The most beautiful moments of my life have been when I communicated with a dad who can no longer stand, talk, walk, laugh, eat by himself , cannot do anything himself, but when I meet his eyes - then I see his soul. That’s a new way of seeing him and our relationship hurts but still its love. We do not need to talk to communicate, there are many ways to do it, be creative, imagine someone who has become paralyzed or in a coma, seize the healthy things.
Try thinking this: the body dies, but the brain is still conscious and the person understand it all, but cannot say anything, because the person can no longer speak, the brain has closed down that machine. Think about everything we do around this sick person, imagine that inside the diseased body, is a person trapped, that cannot communicate anymore. Yes, I choose to believe that. Otherwise, my dad is just a former human. And he’s not.
Many of us might suffer from dementia one day, and unless we know how we want to be treated by everyone then, who will transform the way it is today, who will help you?
Founder DON’T FORGET ME