why this blog?

In my opinion, there are two things I could have done with this blog. 

  1. Created with pictures and words, an image of me and what I’m doing that is not real.
  2. Put down what happened, as it happened, and how I felt about it, no matter how it made things look.

Yep, I’m human, so there may have been a time or two I did not live up to number 2, but I never meant to do that, and do not remember doing it.

It’s really been a great tool. It probably has mostly helped me learn to express myself a little bit. I enjoy it now. This blog has had a little over 262,000 page views. If memory serves me correct, I think I remember seeing that it has been viewed in over 125 countries.

When I attended a meeting in Lake Havasu Arizona, I met a practicing psychologist. He told me that as he read each post, on this blog, he could tell where I was emotionally, and sometimes physically. He told me I should be proud of the amount of honesty he thinks he saw in my posts.

It’s not that I don’t care what others think of me, because I do. They are my friends. I think the most value I can give them is to be honest and let them see my struggles. No, not because I want them to feel sorry for me, but I want them to know that when they struggle, they are not alone.

Creative and awesome planning has not been my forte, Moving forward, falling and getting back up and moving forward again, has been. I’m persistent. 

I look forward to rest every night, and I look forward to each new day.

“When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, I used everything you gave me”     Erma Bombeck 

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things are good – caregiving and raising awareness

People work through or around emotions by identifying them and using them as signals. 

 I’ve accepted my role as a caregiver and for now, feel comfortable with it. It’s been a tough trail, lots of roots and rocks, but for now, all is okay. I know it could get bumpy again, but I will persist.  

Stepping forward is necessary for raising awareness. No practical experience with promoting myself or my cause, so I have made mistakes, but we have had tremendous success too. 

It’s been a positive experience. I look forward to every day. 

I’ve learned a lot from 24/7 caregivers. 

raising awareness – persistent 

Almost 5 years and 5 months so far. Countless times, I have quit, only to start back up 5 minutes later. I am persistent. I fail often. We succeed often. I keep going!

It’s tough to try and find out how come there’s not much money for Alzheimer’s research

It’s not very productive to walk into a lawmaker’s office and ask them straight away, how come there is not enough money for Alzheimer’s research?

It’s not very productive to walk into a research facility and ask a neuroscientist how come you can’t find a cure?

It’s not very productive to walk into the office of a nonprofit that is advocating for more money for Alzheimer’s research and ask them, why can’t you get more money?

I think, as humans, we are all sensitive when questioned. I think that’s very normal. I also think is very normal to wonder why we will spend approximately 250 billion dollars because of Alzheimer’s disease this year and only spend 1 billion dollars on Research.

Trying to find answers, sometimes gets downright uncomfortable. The mission is not to stay comfortable though, so it is okay to continue the search for an answer. 

that moment a regular Joe or Jane realize they have become a caregiver 

When we do things we really enjoy, it can be a bum feeling when those things have to end. The enjoyable times may begin to rapidly fade away. We may try to stretch it out and hold that door open a little longer, but it will eventually close. When you become a caregiver, and it hits you, really hits you, that can be a tough moment.

You were okay with your life before the person you care about got sick. The diagnosis of alzheimer’s may come crashing down pretty hard. You know the old life is over for now and you have a new role. It’s a role you will accept, but not one you were looking for. It’s normal to have whatever feelings you have. 

We have to get up each morning, and get dressed up and do what is necessary to keep someone safe and help maintain dignity in their life. We have to keep going, on and on and on, and maybe for years . Our lives change when we become a caregiver. We have to keep ourselves emotionally and physically fit. We have to look for support. We have to stay alive.

These are some thoughts I had this evening. As my mood changes sometimes, what I think about follows.

Kenopsia? – Route 66

It’s eerie to stand in a place that was once bustling with folks but now looks abandoned and sounds quiet – a school hallway at night, vacant parking lots or Glen Rio (ghost town created by progress). Not just empty, but super empty. The word “forlorn” describes the feeling. 

age brings the passing of old friends 

I have found myself bothered by the passing of old friends more than I would ever have expected. It’s like I assumed they would always be part of the view. It may even be like a noise you hear for years, without noticing , until one day it gets to quiet. Then you find yourself rearranging  things in order to continue, and sadness creeps in. 

We all have Epic stories to tell . . . . . 

The realization that each person I know may be living life as complex and vivid as I am takes time to accept. We all have an Epic story to tell. When we look at icebergs we only notice the tip, and we must pause to see the feelings of others. Pausing slows our life down. 

What’s a person to think about our alzheimer’s situation? 

When this journey started in the early part of 2012, my knowledge of alzheimer’s disease was limited to knowing my dad died with it. Shortly after, it became clear to me there were no scientifically proven preventive measures, and no cure.

Then came the revelation that doctor Aloysius Alzheimer had devoted a lot of his time to a lady by the name of Augusta Deter in the early 1900’s. She became the first well known and named case of alzheimer’s disease. It pops in your mind at some point that we have known about the disease for over 100 years. 

Also at this point, two words became worthy of noting. Prevention and Cure. Later two more words presented themselves to me in a big way. Those two words were Patient and Caregiver

At some point I began reading more about clinical trials and research concerning prevention and a possible cure. Nothing seemed to be working, except on mice.

Then came the startling fact that experts say that if we can’t stop this disease with either prevention or a cure, it could bankrupt the American Healthcare System. About the same time I found out how much money is spent on research, not much. 

Here is where I must admit something about my social media posts. I have focused on and blamed our lawmakers for simply not giving us enough money for research.

Then came more thoughts. We seem to have two camps of thinking. One says if you bring up anything that questions where we are, that you’re being negative. The other camp says we have to hold ourselves accountable and figure out the truth of the matter and work towards change. 

So here we are, a little over 5 years later, and still no scientifically proven preventative measures and no cure. The money spent on research has increased, but not by much.

Here may be the real kicker of a question concerning this. If experts are correct about the American taxpayer spending between 225 and 250 billion dollars on Alzheimer’s in 2017, why are we only spending 1 billion dollars for research?

So here is where the title of this post comes in to play.     “What’s a person to think about our Alzheimer’s situation?”

Here is where I am confused. Why is so little being spent on research concerning a disease that is costing so much financially and emotionally? Is it because lawmakers feel they sense of a lack of good ideas? The lawmakers have access to the same reading material I do. They see the flow of clinical trials that, although I imagine produce valuable information, do not show proof of prevention or cure. 

There is no hype hidden in among my personal feelings. “Sometimes I feel hopeful and other times I feel hopeless.”

This post and my time involved in the Alzheimer’s situation is my attempt at trying to help.

Coping and solving – caregiving 

As a caregiver we not only have to learn how to cope with things that may not be able to be changed, but we also can learn ways to solve problems, you know make them go away. I’ve attended a bunch of support group meetings and I saw people there that needed to learn coping skills and I saw people there that needed answers to questions that could be solved. Coping with a problem and solving a problem are two different things. I saw some good stuff and heard some good stuff at the support group meetings I attended in different places around the country. A lot of the old attendees were tremendous help to the new attendees. No, and I’m not talking about age, I’m talking about time as a caregiver. Those folks learn a lot of stuff

My thanks to the Alzheimer’s Association for letting me attend.