Instagram to Reach Alzheimer's

I'm loving Instagram where I now post a daily prompt response and use it to mull about my Alzheimer's issues. I don't seem to be reaching anyone who actually has Alzheimer's or dementia (that was my goal), but there seem to be a lot of people who are learning more about what the disease is and isn't from my posts. So, that's a good thing. If you aren't following me on Instagram, take a peek and be sure to read the posts.

jeanchaneyaz

Instagram, Tarot, and Alzheimer's Unite

My Journal Nook

Determined to be of help in dispelling incorrect beliefs about dementia and Alzheimer's, I've decided to toss the card maker image of my past life and promote the tarot loving, hobby rancher, weaver me that has evolved over the past three years since my diagnosis. 

Since no one has been able to find this blog, I added it to my profile on Instagram where I am hoping to make new friends with others who share my passions. If you found me through Instagram, welcome. If not, a link back is: jeanchaneyaz https://www.instagram.com/jeanchaneyaz/

Why Did I Come Into This Room - Alzheimer's

Some days you've just got to laugh. I know everyone of a certain age, or even younger, has this happen all the time. But just because it's happened to you does not take away my diagnosis. Stop trying to tell me that because you can't remember why you walked into a room now and then makes you the same as I am with my slowly tangling brain. It's just not helpful.

Thank you.

 

 

 

 The Slow Roasted I

 

 

(Why do my posts always have Alzheimer's or Dementia in the titles? For those search engines. But, so far I can't even find my blog if I look it up on Google, so I don't suppose it's helping much. I started this blog hoping to be a bit of an encouragement to others in my situation. But, maybe it will just have to be for me. I'll keep trying though to get it out there.)

DementiaTurns Grateful

 Grateful for: HANDS

I don't suppose we think of this often, but for some reason, that's where my thoughts went today. I think I noticed that my left hand fingernails were ragged and just a mess as I use my hands as tools for gardening. I often will watch my dog play, using her mouth to catch a ball, and wonder what she would do if she suddenly had hands to catch instead. I think of other animals without hands, like fish and birds and remember how I've felt sorry for them, even as a child, as they lacked hands to things that seemed to me important. There are some animals that do have hands. Little rodents holding a treat and nibbling away captivate me. Gorillas, monkeys, and apes have hands, but don't captivate me at all. I wonder why? 

I have used my hands to comfort a child, wipe away tears, play music, bake, turn pages of a book, use a keyboard, and now, when my hands can't seem to tie a knot or hold a cup in place I know not to blame my hands. Arthritic and dealing with pains they still will do most things that I command them to do....except when I can't command. Losing some simple, everyday, uses of my hands makes me angry. I can scream out loud (as long as no one is around), curse the universe, (actually I usually direct the anger at myself), but it doesn't help. Walking away, calming down, and waiting for tomorrow still works most of the time. 

 

 

        Sometimes I have to just learn the skill all over. 

        Time consuming, but I still have time. 

        Grateful for hands. 

Rawpixel Image

How Did I Know I had Alzheimer's?

Interesting question. I, like most people my age, had lapses in memory. Where are my keys? Where did I put my purse? What day is it? Common and nothing to fret about, right? When I couldn't remember which was the hot and the cold tap in the shower though, I started to worry a bit. But, friends and family assured me that those things happened to them all of the time. Hubby was referred by our PA to a neuropsychologists for testing and I questioned why our doctor was sending him. "Because I asked", he replied. When his test results came back as being having cognitive memory decline, I asked my doctor to set up a referral as well as I thought my symptoms were worse. 

A few days before my appointment I had a bizarre thing happen though that made me think I was right in having fears. I got up in the middle of the night to use the bathroom and couldn't find my way out. We had a small bathroom and I couldn't find the door handle. I kept turning around until I wasn't even sure where the door was. I finally found it and crawled into bed. That's when I realized that I had forgotten to open my eyes. 

The time came. After one day of filling out tons of paperwork and answering lots of questions from the doctor, and another day doing about 4 hours of testing. I was ready for a return trip to get the verdict. I knew I had not done well. Everything was difficult for me to do. I have a Master's Degree.... I am not a stupid person.... I was a teacher for many years..... I ran a school office for many more years.... yet, I knew I was in trouble.

The doctor himself opened the door to his office. I took one look at his face and said, "I have Alzheimer's, don't I?" He looked shocked for just a brief second and then said, "Yes." I think hes was grateful to have someone who didn't argue, cry, deny, plead for a different diagnoses. 

He went over my results and pointed out my "failures". For example, I had drawn the time on a clock wrong. Hey, we learned that when we were about 7 years old, didn't we? How could anyone do that wrong. But, there it was, in my own drawing. WRONG! And, on and on it went. 

He proceeded to tell me that I needed to play games and that was even more important than friends or family. If anything was easy, move on and find something harder to work on. Find new things to do, see, learn. Do not give in to this. He was very motivating and made me know I could do this. Another thing he said that I have to repeat to others all the time. "Your verbal skills have not been touched yet, so you're biggest battle will be people refusing to accept your diagnoses." How right he was. 

Fortunately, we found it very early. Some medications (nothing can stop the progress, there is no cure) will help to slow the symptoms. He assured me that it will be many years before I am, what most people think of as fact, the image of what I thought someone with Alzheimer's was like. 

On a lighter note:

With a diabetic husband, and being pre-diabetic myself, I have learned to use Keto style deserts. This is a peanut butter pie made with a chocolate almond flour crust. The filling is cream cheese, peanut butter, fake sugar, and a bit of almond milk, poured into the cooled crust. 

I could skip dinner most nights and just go for dessert.

Dementia Determination

When you weave a pattern, you must be able to count correctly. Obviously that is a skill that is being challenged. I suppose many would just through up their arms in despair and give up. Not me. I am learning not to be so hard on myself. Say a few cuss words, walk away, and take things apart. Sometimes it takes several days to do a step that would take a "normal" person a few hours, but that's just the way it is now. I'm retired, I have the time.

I'm making some (insert to say that I am having trouble remembering what they are called, but I will pause until I can tell you).......placemats for the kitchen island. When I finish, and I will, I will post them for you.

Alzheimer's - Don't Fall for Everything You Read

I had to laugh when I tried to look up my blog in Google. Google says it doesn't exist. Guess I'd better bookmark it so I can find it even if nobody else can. That's okay though. I'm hoping my family and friends don't stumble across this anyway as I'm sure they would not be pleased. But, I was hoping that others with Alzheimer's/dementia would be able to find it and that it would encourage them to plow forward instead of focusing on the negatives that they read on the Internet or what their ill informed doctors tell them. 

This rant reminded me of all the places I went to when I was first diagnosed to find something, someone, anything to make help make sense of this. Actually, the Alzheimer's official groups are quite dismal for us. Good for those poor caregivers that are stuck with us though. So, I joined a couple of Facebook groups. I left one almost immediately as all the posts were from caregivers complaining about how horrible their lives were because they had to deal with terrible behaviors on the part of their charges or loved ones. Their lives were ruined and they were so miserable. They each came with stories of some incident to frighten me even more of my future. So, I found a group that was just for those with Als or Dementia. Perfect, I thought, until one member was so upset at her diagnoses that all she could post about was was to end her life. Really? Well, not one to mind my own business, I proceeded to advise her to focus on the things that she could do instead of the things she couldn't. I guess I really hit a nerve though and got blasted for thinking that someone should actually find something positive in life. I left that group as well. Now, the only one I follow is Gail at the Too Young For Dementia blog (https://dementiaalzheimers.home.blog/) because of her positive and upbeat approach. Between the two of us (and there may be more, I hope) we will change the face of dementia. 

On a lighter note; One of the things I went back to recently is weaving. I realized that it requires a lot of math and so, after a 10 year pause, I pulled out my looms. Amazing that I had forgotten absolutely everything about how to weave😏 But, after many tears, many unprintable words, loads of frustration and walking away, I am back on the path (thanks to all the YouTube videos and helpful Online groups). This is the start of some dishcloths. Loving this addition to my daily list of "must do's".

A Beginning of Tangled Dementia

This will be a journal, for myself, to preserve memories and thoughts for future reference for me as my mind slides into the inevitable future with Alzheimer's and dementia. I was inspired by a blog that I read regularly, Too Young for Dementia (https://dementiaalzheimers.home.blog/). Gail has early onset, I have the plain old regular, take its time kind. That means that my symptoms don't show and people simply don't believe that I have Alzheimer's as my speech pathways have not yet been affected. Outsiders don't see the issues I have to deal with and family and close friends want to pretend that they are not losing me to this horrible disease. (This makes it doubly difficult as there is no one to share my fears with.)  

My goal in doing this blog is to show others with a similar diagnosis that we don't have to just give up and die. I intend to relearn everything that I can't remember or do any longer into the still working part of my brain.

Many years ago, way before I ever thought about Alzheimer's, I read a report of three aged brothers. Two of the brothers died quiet early of Alzheimer's, the third lived into his 90's. When he passed, an autopsy showed that his Alzheimer's was very advanced and he should have died years ago. Why? He was also a mathematician and continued to study and even write books up until the end. He did NOT give up.

I truly believe that my determination and willingness to work hard daily on learning new things will allow me the third brother's kind of life.

There is a lot of information out there but I have found that most of it caters to the caregivers. We, with the disease, are thought to be brain dead.....not yet, so don't put me in a box where you think we all sit in a chair staring into  space and drooling. We still can think, have feelings, have opinions. We have good days and bad days. Many of us try to keep a sense of humor when we do absolutely stupid things. I'm here to prove it all to you.

Everyone has to deal with something they didn't ask for. We all die eventually. Our purpose in life is to learn from everything that is thrown at us and gracefully (sometimes after a bit of a stumble) get up. I am getting up. I truly believe this challenge was given to me so that I might help to change the current perception of an Als. (Term used in the airport to let staff know that they're dealing with a potential wanderer, LOL!) Help cheer me on.

If anyone is reading this, I welcome you on my journey. I added Tarot as one of my "new to me" things to learn. So, like The Fool, I set myself along this tangled street with my tangled mind to find a new adventure.