Thursday, April 30, 2015

Still Alice , A Pateint's Perspective


WARNING SPOILER ALERT:
We watched the movie Still Alice the other night. I am still trying to figure out whether I liked it or not.
Having talked to Lisa Genova on many occasions, I wanted so much to like it. Being the author of the book, and having done a few radio shows with her, it is easy to see she is very passionate about dementia. 
I couldn't help but notice that during the credits there were twenty consultants used in making of Still Alice. And not just any consultants, but twenty Alzheimer consultants. Many from the Alzheimers Association. 
One would think with that many irons in the fire, this surly would have hit the mark. And it did, in some regards.
As always, you will hear me say, "If you want to know about dementia, ask a patient."
It is beyond me how someone thinks a consultant on the subject, or caregiver for that matter can tell you how this disease effects a patient. 
This was obvious in some scenes in the movie. Granted, there were things that were dramatized, it is a movie. But some were, well for all intents and purposes, were just wrong.
One being the run Alice took. Granted, patients do get lost, or are not familiar with their surroundings at times. But in her jogging scene, when she ended up in front of what looked to be some sort of court building or whatever, they made the scene look as though Alice was seeing through a "fog", things weren't clear.
This clearly was to represent when many patients talk about "foggy days". The thing is I have many "foggy days" as I'm sure your loved one does.
All patients do. But as a patient I can tell you that is a metaphor, the term "foggy days". In other words, when I speak of "foggy days", my vision is not impaired what so ever.
It is my mind that is impaired. The movie suggests that when these times occurs, we patients have trouble focusing or seeing people, things, objects, etc.
This is not the case. They missed this one completely. Which if they would have a had a patient as a consultant they would have realized this.
Another scene was she was marking her words with a yellow marker, while reading a speech. This of course doesn't happen either.

I have done many a speaking engagement, and I can tell you from experience that no patient is going to use notes when speaking. They will not and cannot follow them.
The first thing when doing a speaking engagement is it is very stressful. To anyone, no matter how many you have done. Couple that with the fact that you have dementia, and you should get the point.
I speak from my heart at these things. I never use notes, or tele-prompters, or cheat sheets, that simply wouldn't work. First of all, I can read, but after the first two paragraphs I have no idea what I have said, nor what I had read.

Then there was the fact that Alice carried a gene that was 100% going to be passed down to one of her three children. That too is more drama.
Does this happen? It does. But not very often, matter of fact is very, very rare. Less then 1%. But it is dramatic.

The worst thing I watched was when they had Alice do a video to herself explaining step by step how to commit suicide. This was most disturbing.

Again, does this happen? I suppose. But what they did was, they showed how Alice had to watch the video over and over to understand what was on it, what it was about. Then she was interrupted while in the process of taking pills, and they never went back to it again.
In other words, they took a very serious situation, and just left it. There was no explanation as to who found the pills she had dropped, what was said when they were found, and what the family did to prevent this.
All in all, it was a movie. Made for entertainment. It was indeed fiction. Meaning its not real. And that was a shame. Of course had they done a movie about the real effects of Early On-Set Alzheimers no one would have seen it.
The true effects of this disease are not dramatic, they are dull, but they are there. They could have also showed how the the real struggles of this disease effects families.
How many have lost their homes, their entire savings, and their sanity. Instead they portray a couple, one is a Physicist, the other a Linguists Professor.
What do you suppose this would have looked like had the husband been a factory worker, and the wife, the patient worked for Wal-Mart?
I contend again, this would have never made it to the big screen, yet this is indeed the real world of dementia.
I am glad Lisa Genova wrote, "Still Alice". But I wish one would remember, it's not real, it's fiction. I think if you want to know about dementia, again, ask a patient.
If I want to know about car engines, I don't ask a pilot. If I want to know about planting flowers, I don't ask a construction worker.
One day, a real version of dementia will hit the Hollywood scene. I am just afraid it will be like it was in the 80' when AIDS killed so many people.
That is what we will witness one day on tv. The tragic death of tens of millions from a disease that no one ever took the time to learn about, let alone demand funding for.
We live in a really messed up world. Our priorities are so out of whack. This disease has taken millions of lives, every 68 seconds someone is diagnosed with some form of dementia, yet we are decades from anything that would come close to a cure. Decades.
Make a movie about that. The real truth about dementia. None of have beach houses, none of us can go on a year sabbatical, and none of us can just pick up and move at a moments notice.
We have people right here on Memory People™ who would give anything to have just a couple of hours of respite. We have patients on here who can't tell five minutes from five hours.
The real horrors of dementia were not shown in this movie. But it's Hollywood. Why would it be???
In closing, I would not recommend any dementia patient see this movie. And if caregivers want to see it, I would recommend that they talk to a patient before and after seeing the movie.
Then, and only then will you get a real sense of what "Living with Dementia" is all about. This book sold millions, made Lisa a very rich woman. I just wish she would have asked just one patient what it is like to live with dementia.
Hollywood had twenty consultants on this movie, and still missed the point, why am I not surprised???

Thursday, April 23, 2015

Bad Days

Bad days. Many times I have spoke of bad days, as many other patients have.
You will hear family members and caregivers talk of bad days. Sometimes for me I can have a string of bad days. Two, three, or sometimes four or more in row.
Bad days are as unpredictable as the weather. The thing about bad days is as a patient you can feel them coming on, but you have no idea how long they will last.
I want to explain to you about something that you rarely hear about if ever. "Bad Hours".
Bad hours is really how it begins. As a patient I can tell when this is about to start. Things in my life are always confusing now, however some days and yes, some hours far far more difficult.
There isn't a time with this disease the patient isn't confused about something. It could be not remembering someone's name, could be not knowing what time it is, it could be not understanding what is being said to them, or it could be not recognizing things or people around them.
As a patient the most terrifying part about this is not knowing how long it will last and if you will get back to your "normal". For me I can have a string of bad hours that is consumed with confusion, fear, anxiety, and a whole host of other things.
My personal opinion is that this disease mentally drains you constantly. I am mentally exhausted every waking minute. There isn't one minute in one hour that the patient isn't constantly trying to remember something, recall an event, someone's name, the time, the date, their surroundings, and on and on and on.
Knowing all this, and keep in mind this disease progresses is horrifying for us patients to deal with. that in itself is mentally exhausting.
The only thing that I can do as a patient to help myself has nothing to do with medications for dementia. Every drug I take, and I take several in the morning and several in the evening, have nothing to do with the disease itself.
All the medications that I am on, are to try to lessen the symptoms of this disease. If you have been here on Memory People™ for any length of time you should know by now there is no "fix" for this.
The best advice I can offer to caregivers is to make sure their loved one is on some type of medication to help them deal with the symptoms of this disease.
There is no drug available at this time that slows the progression or cures dementia, period. There are dozens and dozens medications that can and do lessen the symptoms of dementia.
There is no way that I could function without to medications that I take daily. And yet, none of them are directly for the disease. Every one of them are for the symptoms of dementia.
No one wants to see their loved one in a zombie like state. However, being prescribed the proper medication and the proper dosage can help with the symptoms from dementia.
If your loved one is prescribed one of these medications and they don't seem to be helping, do not take it upon yourself to double up on the dosage.
All these medications take time to work. You may see some effects within days, other medications case weeks to work.
Remember, there is no medication that is going to "fix" this. The best you can hope for is that you will find a medication that works for your love ones situation and may lessen the symptoms of this horrible disease.
Do not believe everything you're reading on the Internet when it comes to the types of medications that will help your loved one. The place to start is with their family physician, not with something you read about on the Internet.
Your love one will experience bad hours, bad days, bad weeks, and bad months. Toward the end all you can do is to keep them pain-free and comfortable.
There will come a time when the patient will slip into an almost comatose state, to which there will be no recovery. Dementia is a disease of the brain most most complex organ in the body.
In time, patients we'll lose the ability to walk, to talk, to eat, to swallow, yes even to breathe.
Do what you can for your loved one. There will be a day when it is in God's hands. Deal with today, not what is coming in the weeks, months, or years to come. 
Worrying about it won't change anything. Have a plan, then have another. Pick your battles, and remember, it's not them you are having to deal with, it is the disease, it's always the disease.

Saturday, April 4, 2015

Holidays and Dementia

Another holiday is upon us. Just a reminder, what once was, is no more. If you are having a family gathering remember the dementia patient may have no idea what is going on.
There routine will most likely be changed, which is never good for a patient. Try to keep the noise to a minimum. Even the family just being together as we all love, can be very stressful on a patient in any stage of this disease. 
Make sure they are sitting at the table where they always set. If you are using different plates and things, let them eat off of what they normally do. 
Even though "Grandma" used to love all the kids around her...that was then, this is now. It can be overbearing for a patient. 
We take holidays for granted. But as a patient, I can tell you every holiday is now stressful. Days adding up to the holiday is stressful as well for some.
Our Easter this year is uneventful. Paige McMullen, my wife and I will have a quiet dinner of sorts here at the house. We may go to the camper for the afternoon. 
Or we may just do some things around the house outside. Just remember, anything out of the ordinary can be stressful on your loved one. 
Sometimes just taking them to another part of the house for a bit helps. If they just sit in their chair and act bored, they could be just trying to cope with what is going on.
Patients need not be entertained all the time. Just sitting quietly may be the very best thing for them, that and keeping everything as normal as possible during the festivities. 
May you are yours have a Blessed Easter Day. Remember the reason for the eggs. Perfect time to tell the little ones about our Savior, and why we celebrate this holiday. 
Happy Easter, everyone....He arose.

Thursday, April 2, 2015

What?

What? I find myself asking "What" all the time now. When someone says what, you figure 9 out of 10 times they didn't hear what you were saying.
Well, with dementia, not so much.There is nothing wrong with my hearing. The problem for us patients lie between our ears.
I ask what, because then when whatever is said again, it gives me an extra minute or two to figure out just "what" was said. How do I respond, having no idea at times what someone may be talking about.
Especially if a couple of things are going on at the time. More than one person talking, music playing, kids around, dogs barking, etc.
Having dementia makes it so you have to try to pay attention to everything around you. You will find patients are more inquisitive than ever. 
It's not that they want to question every little thing, it's that they no longer understand for example where they are, why the are there, who they are with, and on and on.
Many times dementia is thought of a disease that effects ones memory, and it does, of course. 
But there is so much more that goes on, then loss of memory. A good example is who doesn't love having a cup of coffee with their spouse, or a couple of beers with friends?
This to many patients is no longer possible. Just a casual conversation can bring on anxiety. It shouldn't, and this is one of those things that everyone tries to "fix", but can't.
I hear all the time, "Is there anything I can do"....well, no there isn't. In fact sometimes just trying to "fix" things that happen, brings on more anxiety. 
If any of this could be "fixed" it would have already. Again, if any of this could be "fixed" someone would have figured it out, and somehow put a huge price tag on it.
Memory loss is a huge business. There are people making millions. And that is fine, it's the American way. Just try to keep in mind, that there is no "fix" for any of this. 
There are medications one can take that may lesson the symptoms, or even some remedies that may also lesson the symptoms, but there is nothing that will slow the progression or cure what we deal with.
There isn't, and if you get involved in a conversation with anyone who tells you any different, they are simply saying what they think you want to hear. 
And if they start spouting off about things they don't know what they are talking about...just look at them and say, "What"?