Monday, March 21, 2016

Dementia And Progression

I haven't posted for a while. Truth is things are a bit foggy. Not in a sense of seeing things, but in a sense of understanding what is going on.

Leeanne and I had a long talk about this a couple weeks ago, or it could have been yesterday. All I do know is we have talked.

I set Mp up so when this day came, where I wouldn't know exactly what was going on, others would. Leeanne does, and she has been a God send to me. I will never be able to tell her how we feel about Louis and her both. They are family.

I read a post, a short post this morning from a member who said she had been here some three years but this was her first time posting.

That's the thing about Mp. Sure we want people to engage and post. That's how we learn from one another. But it certainly is not a requirement.

Many of our members don't post for one reason or another. I am getting to fit into that mold. Simply because of the disease.

Over the years I have heard over and over, "How does he do what he does, having dementia? My loved one can't do hardly anything."

Well, I am getting to that "can't do hardly anything" mode myself. I kept telling everyone around me that this was coming. And now it's here.

I am not going anywhere. I just won't be posting as I once did daily. I can recall when I used to do daily video's and post them on here.

That came to a halt probably a year or so ago. Why? The disease. It's always the disease.

Even though I am slipping, struggling, I still have so much more to do. We have a book to finish, I have about a million other personal things I want to do.

But this disease dictates what I will do and how long I will do anything. I could go on and on about what has been happening, but that would just lead to some sort of pity party.

I have undoubtably had the worst three weeks that I have ever had since being diagnosed. And I know this is just the beginning.

We will still be camping this year. I can only pray this is not my last at that also.

Focus. I have none. Common sense. Seems that has gone out the window also. And my memory, well I have no short term, and the long term is slipping away also.

This is what is supposed to happen. One just hopes I can stay where I am today and not progress anymore for a year or more.

It's like someone turned the lights out. I have done some incredible things since being diagnosed. And I have also done some things that are anything but incredible.

Even saying I have dementia isn't helping anymore. Used to be I would have to remind myself of my condition. Now, it's with me 24/7.  It always has been, but sometimes in the shadows.

Now, not so much. So again, I am not going anywhere, physically at least. I am mentally. And no one can go with me.

This is the beginning of the journey I will take alone. There are many things I have not shared with anyone about dementia.

There are things that happen that are just to horrible to talk about or to relive. It's a dark downward spiral. The depression I struggle with is worse than usual. The anxiety of just having the disease gets the best of you, which adds to the depression, which adds to more medication, which adds to more confusion....

Know this. Do what you can now. Don't wait. Don't put off things you have wanted to do. There will come a day when those things are simply not attainable.

Even if it's something small. Take those walks, even if they are just around the block. Watch your favorite movie or shows, even if you can't figure out what is going on. Listen to the songs that you did when you were young.

Take in this beautiful world we have and give thanks to God everyday you are allowed to be here.

There is not much I haven't done. Most things I still wanted to do were border line illegal anyways. I have had a great life. A wonderful family around me. And Memory People. The love you have given could never be replaced. And it will never be taken for granted.

A loving wife, friend, and companion through the good and the bad. I look back and think, yea I did that. Wasn't the best, but I sure gave it my all....and I will continue to do this, "While I Still Can..."

© Rick Phelps 2016

Wednesday, March 2, 2016

Remember, Have A Plan And Another

Cliche's. There are a million of them. One of the best to me is "Behind every good man, is a good woman."

I have been blessed to be married to my sole mate for some 32 years now. There is no words in the english language that explains what Phyllis June means to me.

There's just not. But I am a lucky man. Behind me are not only Phyllis June, our wonderful daughter Tia Nicole Bookless, whom we are so very proud I also have an impeccable woman, Leeanne Chames.

It is often questioned how I do the things I do. Having Early On-Set Alzheimers and do what I do. Those who question this mean well, but they don't know me.

Rarely in my soon to be sixty three years on this great planet have I been known to give up on anything.

I am not a highly educated man. But I knew very early on in life that if I wanted a life different from what I grew up in, it was up to me. Not someone else to give it to me.

So like many others I worked. I went on to further my education. I took some classes in EMS and Law Enforcement and the doors that open from there has lead to where I am right now.

Not immediately, and not without obstacles. I worked 11pm to 7am for many years, having Wednesday and Thursdays off. I worked every weekend and every holiday for decades.

I knew what I wanted, and so did my the love of my life. We worked hard, each of us having two jobs for well over twenty years. Waiting and dreaming of our golden years we would have somewhere where they only talk about snow.

Then things happen. What you ask? Well life happens, thats what. Dementia came into our lives. It isn't a disease that only effects the patient. Dementia effects everyone who is around the patient.

That brings me to the point of all of this. I am indeed slipping. I can no longer tie my shoes. Well, I can but it takes a couple of minutes and I get so frustrated.

Set you shoes in front of you, and tie them. It takes about fifteen seconds or less for both. Now, untie them, and set a timer for two minutes, all the while staring at your shoes. It's an eternity.

People see some of my posts, like the deck we are building onto our camper and think, how does he do that? Well, he doesn't. I have help. Just yesterday for example I was at our camper and couldn't figure out how to make a simple form for our deck.

It just was gone. Like that. I had unloaded all my tools, the generator, the saws, the drills, ect. and I just sat there and looked at them. I didn't know what to do.

This happens with dementia. You don't know when, you don't know how long it will last, but you simply forget how to do some things you have done your entire life.

This sadly has been taking a huge toll on me when it comes to the daily operations of Mp. For a very long time I have not been able to read many posts, because I cannot figure out what is being said.

I sometimes don't comment because I know what I want to say, but I can't put it down in a comment. This has been very hard on me.

I have been telling Leeanne for some time now, that the time that she will be running things around here full time is drawing ever so near. Knowing all along that time has long came and went.

When we Skype, and we do two or three times a week for a couple of hours each time, we go over things that I know I should already know...but I simply don't.

I am not immune to what this disease does to the human brain. But even at that I am thankful. I thank God everyday for what I have, what I can still do, and what he has given me and allowed me to use in his name.

I don't dwell on what I can't do. I try to just move on, and do what I can, "while I still can". That title was much more than a title to a song or book, it is indeed what I have based my life on since my diagnosis.

I will always be a part of Mp. We all will, who choose to be. What we have here is not a group of people struggling with the same thing. It's much more than that.

From the first day you join us, you will see that. And I have laid out this whole thing for someone to carry on, when no longer can. And that person is of course Leeanne.

I am not going anywhere, anytime soon. I just want to make sure that everyone here knows and understands that nothing will change. And if anything does, it will be for the best of the entire group.

Leeanne knows this and you can be sure she will continue as I would or will for whatever time I have left here.

This is not one of these "oh poor Rick" posts and I don't want or need a lot of "I'm sorry's"  There are a whole lot of people on here doing much, much worse than I am.

This is about me losing some of the ability to know what is going on, and you understanding that it will not make one bit of difference.

Like I said, I am not going anywhere. I just want you to know that we have had plans for this for a very long time now. Remember, have a plan, than have another.

We have things all lined up for all kinds of things. The changing of the COO to CEO, in our non-profit, and the daily operations here have indeed already gone to Leeanne.

How long do I have? Well, how long do any of us have? A doctor once told me I was terminal. I could see in Phyllis Junes eyes this was like ripping out her heart.

I looked him straight in the eye and told him..."We all terminal. I am lucky in a way. I can make the best of things. Things others including myself have long taken for granted."

We live one day at a time. All of us. Everything I have, everything I have every done is because of Jesus Christ our savior. HE will not forsaken me. HE will not forsaken anyone who believes.

That is all HE asks. All HE ever asked. I am truly at peace with all of this. Am I scared? Of course. But I am also at peace. A peace that I hope each and every one of you can find.

We will carry on. "While We Still Can..."

©  Rick Phelps  2016