Harsh Reality

Saturday, July 15, 2017

7:46 PM

There will come a time when I won’t mind anything that happens or that is said, or so they say. But everyone who cares for me, they have to care about things.

 

Caregivers have to sit by and watch as those they care for slowly die. They have to watch as they have good days and bad, as they laugh and when they cry.

 

They have to do this without losing their temper with the person they are caring for. Without losing their temper with themselves.

 

They have to do so much more than simply empty bedpans and wipe bottoms, they dry tears and clean up messes that happen and listen when the person they are caring for goes off on a tangent, or rant, and have to do this without getting upset or laughing at the person, though they will laugh with them.

 

Alzheimer’s/Dementia of all kinds affect everyone differently. They go down the road at different speeds and none in the same manner. Just because someone may go quickly doesn’t mean everyone or even most will follow the same.

 

I was diagnosed almost 10 years ago. Before the doctor started me on the medication I was indeed at a bad time. I couldn’t string words together or come up with words. Or I could think of words but not write them. For a writer this is very terrifying and upsetting.

 

After the medication I could write again and I went on with my life more or less not really realizing there was something wrong with me. Then something would happen and I would find myself slapped in the face with, yup, Alzheimer’s.

 

Despite going down hill every time they had taken me off my medication when I got sick or was admitted and they didn’t really understand the need for it or what the dosage was supposed to be I managed okay. Never got back to where I had been before, but not too far.

 

But the last few months have been harder for me to pull this off. It’s like I have been acting a part in a play and now the lines are becoming more difficult to recall. I am slipping and I know sometimes people might think it an act when suddenly I can’t do the things they had seen me do so easily.

 

When one moment I am fine and talking about, the word eludes me sorry but you probably know what I mean. I am beginning to struggle so need to make this quick. When one moment you seem fine and the next you can not get any word out or suddenly it feels like someone is smashing your brain into nothing, taking everything you spent a lifetime putting in there away. It makes me so angry!

 

I never asked for this and I most certainly would never pretend. Having your life slowly sucked out of you by some horrible thief who doesn’t care who you are or what you have done during your life. And having to know that family, friends and caregivers have to watch this play out to the end while you one day won’t give a shit.

 

I hear some of you, watch your mouth. No! I have just as much right to scream and yell and cry as anyone. I need to do this before I can’t do it anymore. While I still can, as Rick says.

 

We thought it might be due to menopause, after all I am only 53. but I am beginning to wonder. I was having signs way early, possibly as early as 30 my mom said. When she thought back.

 

I started with an idea, but somehow I lost it all. I know it was about caregivers and having to watch as we slip away. Am I still there?

 

Lost. I have been more lost than found lately. Words there and when I go to write them they always look wrong. When I type I trust the spellcheck like I never did before. I try to correct the wrongs but sometimes I can’t because I have no idea which one might be right.

 

All I can say is though even I think sometimes there is nothing wrong with me, when it raises it’s head and lashes out I am not faking it. It feels like an attack like none other. Sometimes there is a fog that takes things away and sometimes the world simply goes dark. Either way I remember little or nothing when it clears and when it clears now it doesn’t clear as well. I am still in a haze. My head feels stuffed too full like it is being smothered. Not too full of memories those are being stolen from me.

 

How much longer? No one can say. Only God knows.

 

HUGS

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Hit another bad patch

I am beginning to wonder how much longer I will be able to come here and write things. It has been very difficult lately. so often it frustrates me because I will have a word and when I go to write it I find it either does not look spelled right, or something else will bother me. Sometimes another word similar to the one I want rears it head and offers itself up, laughing at me I can imagine.

 

Today I was reading something and came across a word that no matter how I tried a different word whispered in my head. That word? Uncovered. Even now, typing it and saying the word along with coming out “undercover” . I had another trial while writing earlier this evening. I knew very well what several of the words were, but purhaps my attempt at writing as much in cursive caused part of the problem.

 

Things seem to change quickly and very much without warning. Then, also without warning, I find myself okay again. Sleepy days may be 24 hours or longer. I have, despite my doctor … I’m sorry. I have no idea what I was going to write. I will leave it for now. Who knows maybe the thought will complete itself later. I can and still do dream. And am falling asleep here. So good night all.HUGS

 

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Great quotes

“If you are neutral in situations of injustice, you have chosen the side of the oppressor. If an elephant has its foot on the tail of a mouse and you say that you are neutral, the mouse will not appreciate your neutrality.”

Archbishop Desmond Tutu

 

 

Witnessing so much shamefulness

 

We can sling mud at each other all day every day and never get anywhere, just plain dirty, and look very foolish by the end of it. It never solves problems and never fixes anything. Just makes one another dirty and angry. oh and sometimes that mud you sling, may have a rock in it and hurt someone and that someone may not be the one you thought it would be.

When someone is insistent on behaving like an infant instead of an adult they are setting no good example. And those who support those sadly immature adults or shrug off what they do are just as bad. They harm everyone and everything around them and it doesn’t matter if they don’t think they are or realize they are. They are guilty just the same.

We all wish when we are children to be an adult, but once we are we find how truly difficult life really is and how many we are responsible for. It isn’t as fun as we think it is and it last so much longer.

I am very sad to be a witness to the shameful things being said and done, it really makes me wish I could close my eyes and go to sleep and never wake up.

Speaking my mind would too often upset many and solve nothing as no one seems to care what one another thinks anymore. No views are shared in friendly debate, there is just hatefulness.

It is a shame there is no one to set a better example for the people and most important those people who will hold the future in their hands.

The sea is filled with all the bitter tears so many innocent have shed and there seems no end in sight. Just trampled hearts and dreams that have been shattered.

 

 

Never give up!

What do I do? Never give up!

Monday, June 19, 2017

12:53 AM

Ron wants to take a trip like we did several years ago. When I could walk a little, and more when using a walker. Yes, I used the wheelchair some, but I could get around if I had to especially in tight, or confined places.

 

This time, there will be no use of a walker, I can’t use one, though Adrian keeps insisting that with just a little exercise I would be able to use first the walker, then not need it. But that would mean that too many things simply were not wrong with me. That either I was imagining it all, making it up for attention, or that the doctors and all those tests they ran on me were wrong. Considering I have been on the Alzheimer’s meds for almost 10 years, I think that is highly unlikely, but some people still believe the moon walk never happened and the holocaust was a made up story to start a war.

 

What people don’t understand is, just because you don’t believe something happened, something big, doesn’t mean it never happened. Like when you say, “I don’t believe in God.” Funny thing about that, he believes in you.

 

It seriously is amazing some of the things people will and will not believe. For the most part it doesn’t make sense. People will often believe the most outlandish things and then turn right around and deny that something far simpler is true.

 

Live is a one way street with many paths branching off but none of them going back. The harder you try to turn around and go back the more narrow the road will became until you are stuck. You have to give in and keep moving forward, regardless how frightened you are, or how tired you are or how much pain, physically and emotionally, you might be in. Regardless what you suffer. You have to keep moving forward. 

 

I began this somewhere. Some thought or idea desired to be written, noticed. Words are like that. Spirit is like that.

 

I may never be able to do many of the things I could once do, like walk, make dinner, clean up the house, dress nicely in so many of the beautiful outfits and dresses I have, but by accepting the idea that I must move forward while still losing so much of myself, I am actually gaining. Gathering more to me. You see how this works? As long as you never give up, you gain more and more with every day that passes. Not lose. You only lose when you give up.

 

Wealth does not come from where you think it does, that is if you believe that money is everything and that having it is all important. That way never leads you to true happiness. Oh, I know there are people out there who claim that it does. But you see, nothing, absolutely nothing, lasts forever.

 

People hang on so tightly to life, they actually squeeze the life right out of it. They destroy any enjoyment they could have had.

 

They work, they fill every moment of their days with as much as they can because they are terrified of the calm, quite the days have to offer. Problems wrap themselves around them like a swaddling cloth. They are so frightened of death, they are not living their lives. They are afraid of not having so they hoard, work until they are run nearly into the ground. Then they ask, “is this all there is to life?”

 

Add to this picture all those people who scrimp and save, struggle every day of their lives simply to survive just one more day. The interesting thing is, these people tend to see, hear, and feel more than those who have more and a seemingly better life. They are, in a strange way happier, freer, and so much closer to what so many are looking for, but don’t realize is right there for everyone to have.

 

If you think I am making very little sense, I am sorry only that you may be misunderstanding something. Some of this is difficult to write so late at night and really I should have gone to bed. For some reason, I am tired, but cannot sleep at the moment. I imagine something needs to be written, completed or at least begun to be finished later in due time.

 

God Bless

 

HUGS

 

Things just don’t want to get better

Saturday, June 10, 2017

12:53 AM

I can’t shake the feeling that something truly awful is going to happen. Most people will think I am being silly or over dramatic, letting things get to me.

Maybe I am, and maybe I am not frightened enough. I just feel something awful is coming. Something that makes much of what we have gone through in the past as easy.

There will be some who say that Alzheimer’s makes you feel that way. And to some extent I suppose we do. After all our world is growing darker, and smaller and far scarier. There comes a time when I am anxious for the unresponsiveness to come sooner.

Of course, it may be all about the changes Alzheimer’s is making with me, especially my mind. Why wouldn’t I start seeing things as going darker and running head long into the apocalypse?

Still, the world seems headed towards a bad place. I wanted a brighter, happier world full of adventure and job opportunities and happiness and no worries about health care. I was hoping this country would stop all the fighting amongst themselves and start getting along better. You can’t deal with the world as a whole if you can’t even talk with your neighbor without yelling or throw nasty words around because someone or something has made you feel uncomfortable.

Some of what I am feeling is coming from all the meanness I see and hear about. We have definitely fallen into a very dark time and we should be afraid. What comes will not be stopped easily, certainly not if people continue to wear blinders or pretend everything they hear, see or read is fake news because it makes them uncomfortable or because they just don’t like what they hear.

Right now I could almost swear I’m in the twilight zone and fell down the rabbit hole to boot. And we all know the nightmare the second story was. I’m beginning to think we are living some of those nightmares written so long ago and it terrifies me. What if some of those books and movies written not so long ago start coming true? What do we do then?

 

A gift for Trisha on her graduation

There are so many things I miss doing, not all of the time, just at certain times you know.

 

Like walking Scotty. I used to do it several times a day when I could, even when I didn’t feel like it I walked him at least a couple, especially in the evening or just as night fell so we could just wander peacefully and I would look at the stars and he would follow the scents of the day. I never had to worry too much about over doing it because he could sense when I needed to come home.

 

Then I broke my right ankle real bad and it took almost a year to heal and even then the doctor said the bone didn’t look strong enough for me to walk safely without a walker. And even then I wondered if I should be at all, but I did. In fact I did so, stupidly, without my walker. Broke both legs badly.

 

You are probably wondering why on earth I would do such a thing, just get up and walk without the walker. Well Alzheimer’s tends to make you forget things and walking was something I had told myself I would do for as long as I could because I knew the day would come when I couldn’t.

 

I have another condition I was born with and has been quite a problem, though I almost never talk about it, mostly because I tried to pretend as long as you can’t see anything wrong, then there wasn’t. I hated being treated differently and they made sure I was all through school. Unfortunately there are many people who thought this brittle bone disease was something they could catch from me. So when parents found out you had the pitying ones, whom I can’t stand either for very obvious reasons, then you had the stay away from her so you don’t catch anything. Then you had the ones who said, “Don’t play with her or touch her because if you hurt her, her parents might sue us and the school.”

 

No, they never said this to me, though I got some of it from their kids. Whether they said it to my parents I have no idea.

 

Why am I suddenly saying all of this now? Well I have had to live my whole life with Osteogenesis Imperfecta my whole life. Lots of broken bones, hurt feelings that I had to keep hidden, and a lot of other things that right now I really don’t want to talk about.

 

I am talking about it because walking has finally been taken from me. I had expected it for many years. Some doctors would be surprised I was walking for as long as I did. Fragile bones wasn’t the whole problem, my back is in pretty bad shape.

 

I’m talking about this now because I want all of you who can walk to enjoy it. Look around you really look at the things around you. I always did. I tried to appreciate every step I took. Like I do every breath I breathe.

 

People tend to live life and forget that there is more to life than simply going through the motions. I try to ask Ron and Trisha every time they come home, and Adrian when I see him after he gets off work, whether they had a good day. I honestly want to hear what their day was like- for them. Sometimes it helps them recall things they might have never thought about. Sometimes it helps in other ways too. People very seldom asked me how my day was when I was younger and now, being stuck in a bed all day, sleeping sometimes half the day I have little if anything to talk about.

 

I still try to appreciate things. Alzheimer’s has taken a lot from me. Almost more than the bone disease I was born with.

 

Anyone reading this, if you actually read this far, thank you. I have many things I am very grateful for. My family, friends, getting to watch the seasons change. Watch the animals play. Scotty really likes Trisha Rachel Sieck’s cat, Bojangles. I will put some photos up and I will try to get some of Bo and Scotty.

 

You see, Alzheimer’s hit me in my early 30’s it just didn’t get properly diagnosed until Ron moved me to WA State. We found a wonderful doctor who was bluntly honest. He kept up on things but admitted it didn’t look good. But he told me to try and keep writing and reading, listening to music, draw when I could not write. He threw me a lifeline and I have an app that shows me what to do each day.

 

My days mostly go like this: I wake usually around 8 to take my meds. Sometimes I fall back asleep, sometimes I stay up and try to do things. Read, write, crochet, whatever, and sometimes I just can’t make myself do much of anything.

 

Getting old stinks. There are so many things one wants to do. So many things one wishes they had done maybe even now, The most important thing is whether we learn anything living this too often rushed through life. What gems did we get out of the struggles we had what scars, seen or otherwise, did one receive while throwing themselves against a wall probably dozens of time before finally giving in. What would your story say to others if you let them read it.

 

What gifts has life given you up to this point?

 

HUGS