Rick Phelps, founder of Memory People on Facebook published the following article this week. Remember, when reading it, that he has had Early Onset Alzheimer’s since 2011. His point of view is very valuable for caregivers to hear and learn from.
You’re loved one is changing. The question is, are you? I have often said that you as a caregiver have to come into my world as a patient. I cannot come into yours. That world no longer exists for me.
In other words we sometimes get all worked up on what works, what doesn’t, what to do, what not to do. The thing is what works today for whatever situation may not work tomorrow. And may not work ever again.
So what do you do? This is where coming into our world comes into effect. It’s obvious that you cannot actually know what is happening and understand what we as patients go through. I’m a dementia patient and I don’t know what’s happening most of the time.
But you as a caregiver have to learn to adapt. Change with the changes. I hate to compare dementia patients to children but here is a very good analogy.
If you have a child say a year old and are giving them scrambled eggs for breakfast. They love their scrambled eggs. Then one morning, all of a sudden they don’t. They spit them out. Won’t eat them. Just won’t.
Instead of trying to figure out why a year old suddenly won’t eat eggs if futile. What you do is don’t feed them scrambled eggs anymore.
Same goes with a dementia patient in so many ways. If one morning your loved one for whatever reason refuses to get dressed, it is not in anyone best interest to make them or to try to figure out why one day all of sudden they refuse to get dressed.
If they for whatever reason decide one day they don’t like the television on, you better not have it on. If they decide their not going to the doctor, all the coaxing in the world isn’t going to change their minds.
In other words in all these scenarios there is one constant thing. Don’t try to make a dementia patient do anything. Now, if it of course has to do with their safety or the safety of others of course you must intervene.
Trying to explain to a dementia patient why they can’t or can do something is also futile. They don’t understand. We sometimes forget this.
It’s normal for us to get a shower or bath every day. But for a dementia patient the water coming out of a shower can be devastating. Could be the fact that the shower doors are shut and they feel confined. Could be that the water hitting them scares them. It could be dozens of things.
The main thing is you have to change your thinking that your loved one must bathe everyday when or if this happens. Now that doesn’t mean that you never see that their hygene isn’t taken care of.
You can easily wipe them off with a wash rag, hit the main spots and baby powder works wonders on body odor. How dirty are they getting anyways?
The point I am trying to make is I cannot help some of the crazy things that happen. No dementia patient can. You will read on here how some caregivers feel that their loved ones can do somethings, they are just not doing them because they want to upset the caregiver.
This is just making excuses for the caregiver not being able to accomplish what they want their loved ones to do. From the smallest things, to huge things.
I tell people all the time that this thing about patients hoarding things is crazy for example. First off, to hoard something you have to have a plan. Plan to take whatever it is you are hoarding, plan to put whatever it is somewhere, and plan to get it later. And remembering all the while where the thing is.
This simply doesn’t happen in the world of dementia. People call it hoarding because that is how it is easily explained away. When in fact what the patient is doing is simply putting things where they think they belong.
Once again, we make things much more difficult then they need to be. I can’t tell you the number of things I have put where they don’t belong. Does that mean I’m hoarding things? Hardly. It means if you find the bread in the oven, for whatever reason that is where I thought it went.
If my wife finds things where she knows they don’t belong, she simply puts them where they go. Many times not even mentioning to me why they were where they were.
I can’t begin to tell you the number of things I have thrown away. From silverware, to glasses, to toothpaste, to full jars of peanut butter. Why? Who knows. I don’t realize I am doing this. It’s not normal to throw away beaters after mashing the potatoes but I have done it many times and will again.
What I’m getting at as a caregiver no matter what any of the “experts“ tell you, you can’t figure out why patients do what they do. Try to figure out why your loved one has a hard time especially during the winter months when it gets dark so early. You can’t.
There will be people who will tell you turn all the lights on in the house. As if this is going to “fix” the thing we call sundowners. It isn’t and it doesn‘t.
I can tell you from someone who suffers from sundowners that if we turn all the lights on in our home about sundown, I will still be confused, nervous, anxious, and even scared, I will just be all these things in a well lit home.
Someone came up with the idea of turning on all your lights, thinking that is the lack of sunlight that causes sundowners. I can have issues of sundowners in the middle of the day. I can have it first thing in the morning. It has nothing to do with sunlight or the lack there of.
That’s me. Your loved one could be just the opposite. Again, what I am saying is we are all different. And what works for one may not someone else. Or what works today, maybe won’t tomorrow.
Think about this, today as bad as it is for your loved one, this could be the very best day they ever have again. We simply don’t know. There are good days and there are bad.
Most of my days anymore are bad. With a little bit of good throughout each day. But all in all, I know what is in store for me today, tomorrow, and the next. I just don’t know if I will ever have a really good day ever again.
And nothing can change this. You as a caregiver can help by coming into our world as I said. We simply cannot function in the world you live in. The one we use too.
It’s not there anymore. And it never will be….
© Rick Phelps 2018
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Wacky Wonderful Wednesdays published randomly
Some Things I Learned About Dementia published randomly