Thursday, April 23, 2015
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.