Tuesday, November 10, 2015
I talk about acceptance of dementia a lot. For one reason. I have accepted what has happened to me, and I see how others who have been diagnosed who have not accepted what is happening are doing and there is no comparison. It is indeed like night and day.
Acceptance. Meaning you accept how things are. Doesn't mean you like them, or you agree, or you have given up in any way.
Having issues with my memory for at least five years prior to my official diagnosis,and its been another five since my diagnosis I have had at least ten years to deal with what is happing. And after that diagnosis, nothing changed. For me anyways.
I mean nothing change as far as how I was doing, I wasn't any worse after the official diagnosis. All I had was an official diagnosis of dementia.
I was just now officially diagnosed with Early On-Set Alzheimers. Beings I had issues for years prior to this diagnosis, that enabled me to accept this disease easier. When I was diagnosed it was like someone had lifted a weight off of my shoulders. I finally had a reason as to why thing were like they are. People would finally listen. They would understand why I had been complaining for years about my memory.
I wish I could explain acceptance better. If I could there would be no one living in denial about this disease. Not the patient, not the family members, and not the caregiver.
Everyday you live in denial, that is a day you will never, ever, get back. And this disease will progress whether you accept it or not.
You see when you accept something, anything, it makes whatever that something is much easier to deal with. It doesn't make what ever it is go away, and it doesn't necessarily change anything, it's just how you look at your situation, how you cope, and how you move forward.
I tell people all the time when they ask how I am, that I am thankful. Again, I guess you would have to walk a mile in my shoes to understand being thankful as well.
But the truth is I completely understand what is happening, what is gong to happen. I know what my fate is. Something very few have is knowing what lies ahead.
For that alone I am thankful. It has nothing to do with having this disease, what is has to do with is by the grace of God, I have been given this time I have to share my experience and struggles with dementia in hopes it helps just one family, one person.
There are days I am not thankful, of course. There are days when just putting one foot in front of the other is a challenge. Yet, those who read my posts, or are around me think, "He talks and explains himself so well, there is no way he can have dementia."
I have been told how lucky I am. There are a lot of adjectives I could use to explain how I am, but lucky would not be one of them.
When you look at your loved one, in perhaps the later stages of this disease, you have to wonder how could anyone consider what they as a patient, or even I as their caregiver be taken as thankful.
It isn't of course. I too will come to a place with this disease where I am not thankful. Those around won't feel thankful, and the whole thing in general will not be something that can be looked back on and be thankful in anyway.
But they should. You see, right now I have had with my prior memory issues before the diagnosis, and since, being close to ten years, I have had ten good years.
In them then years there have been plenty of days, hours, and minutes where I didn't have the ability to feel thankful.
When you hear of a patient who is either in the beginning, or mid stages of this disease, you will hear them talk of "bad days", or "foggy days".
The reason we refer to these days as "foggy" has nothing to do with how we see things, it has to do with how are brain perceives things. You can't think clearly, you can't make decisions on even the best of days.
In the last ten years I couldn't begin to tell you how many of these days I have had. On an average and the thing you have to realize is there is no average with this disease, but if you could begin to average out how many bad days a week I have, I would have to say four.
And them three "good days" I have, those days are always filled with hours of confusion. There is no time when I am free of dementia and neither is your loved one.
This is why, especially in the beginning you realize how thankful you should be. And if you accept what is happening, I will tell you that this road is a lot easier to go down.
I see everyday people who are in denial, people who won't accept what is happening to them or their loved one. The sad part is you cannot help these people.
Acceptance can only be done by the individual. Be it the patient, or the family. And as I have said over and over again, when you are in acceptance it doesn't mean you have given up as a patient or a caregiver.
It simply means you understand what is happening, and what is coming. Then you can have a plan, then have another, because you will need a plan.
And that plan will change nearly everyday. When you are in your darkest moments, as I have been with this disease. When I can't figure out for the life of me what is going on, I am bombarded by the symptoms of depression, anxiety, fear, loneliness, confusion and despair, it is times like these that one is not able to accept what is happening.
When you have these dark days, these foggy days, these bad days, you are not able to accept what is happening, simply because you are not able to do anything rationally.
But today, I am thankful. Right now I am thankful. I accept what is happening and I accept what is coming. I may not in an hour. And that is how dementia works.
There is no rhyme nor reason to this disease. Those who tell you they have it figured out, what to do for your loved one in almost every scenario you can think of, are just telling you what you want to hear.
Take a step back when things become chaotic with this disease. You will not and cannot change what is happening. The only thing you can do is take one day at a time, cope with what is happening right now.
Because in an hour, all hell may break loose once again. Once you learn to accept what is going on, instead of trying to change it, you will feel a sense of peace come over you.
Will it change what is happening? Of course not. But it just may save your sanity. I am not an expert in the field of dementia, but I am a patient. Trust me when I tell you, acceptance is the way to go.
© Rick Phelps 2015