By Rick Phelps
I haven't posted in a while. The truth is things are a bit foggy—not in the sense of being able to see things, but in regards to 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 that we have discussed this.
I set up Memory People so when this day came when I couldn't understand exactly what was going on, others would. Leeanne does, and she has been a godsend to me. She is family.
I read a short post this morning from a member who said she had been here for three years, but this was her first time posting.
That's the thing about Memory People. Sure, we want people to engage and post. That is how we learn from one another, but it certainly is not a requirement.
Many of our members do not post for one reason or another. I am starting 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 when he has dementia? My loved one can hardly function."
Well, I am approaching that "can't do hardly anything" mode myself. I kept telling everyone around me that this was coming, and now it's here.
But I am not going anywhere. I just won't be posting as often as I once did. I can recall when I used to do daily videos and post them on the site. 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 be able to do it. I could go on and on about what has been happening, but that would just lead to some sort of pity party.
I have undoubtedly had the worst three weeks that I have ever had since my diagnosis, and I know this is just the beginning. We will still be going camping this year, and I can only pray this is not my last shot at that also.
Focus? I have none. Common sense? It seems that has gone out the window also. And my memory? Well, I have no short-term abilities, and the long-term is slipping away also.
This is what is supposed to happen; what we expected. I just hope I can stay where I am today and not progress anymore for a year or more.
It is like someone turned the lights out. I have done some incredible things since being diagnosed. And I have also done some less than incredible things.
Even saying I have dementia is not helping anymore. It used to be I would have to remind myself of my condition, but now it is with me 24/7. It always has been, but it used to spend more time lurking in the shadows.
So again, I am not going anywhere (physically at least). I am mentally, though, and no one can go with me. This is the beginning of a 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 too horrible to talk about or to relive. It is 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 calls for more medication, which adds to more confusion… It is an endless cycle.
Know this, though: do what you can now. Do not wait. Do not put off things you have always wanted to do, even if it is something small. There will come a day when those things are simply not attainable.
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 loved when you were young.
Take in this beautiful world we have and give thanks everyday that you are allowed to be here.
There is not much I have not done. I have had a great life. I am blessed to have a wonderful family around me. The love Memory People and other support groups have given could never be replaced, and it will never be taken for granted.
I look back and think, “Yeah, I did that. It wasn't the best, but I sure gave it my all.” And I will continue to do exactly that, "While I Still Can..."