01.09.20 Dementia is an awful little disease

Dementia is an awful little disease.

There’s really nothing little about it.

You get a diagnosis and only share it with your closest friends and family. You do see a few deficiencies you haven’t had before but you work around it and go on.

Then you can’t read words well, sometimes. You don’t remember things that you just did or that just happened, more often. Other signs come more often and you share with others around you so they understand when you are “weird.” It starts to become frustrating but again you work around it and go on.

The people in your little world get used to you not knowing some or most of the words you want to use. You scale back your life to a simpler way and life goes on. Being mostly “with it” enough to see what is happening becomes much more frustrating and scary.

Then one day, years into this dementia journey the “sometimes” fog visits more often. There starts to be more reminders or signs that your brain functioning has declined. Little things like being mentally worn out after talking to others for a while. Frustrations become common when trying to make organizational plans for things like traveling, writing blogs, or keeping a house running well.

You lull yourself into enjoying that time of doing well even if it wasn’t perfect. Those days become the good old days when out of the blue a big strong downward dip starts.

I’m having a difficult time knowing how to describe what this downward dip in dementia looks like but I’ll try.

Since last week I’ve been in a deep fog. I had a big brain block while I was trying to remember that we went to the pharmacy last week to pick up some medicine. Soliqua. That morning I wondered about what happened to the soliqua (diabetes injection med.)  I called Roy who had gone into town for his physical therapy to see what he knew about it. He told me we did go to the pharmacy the day before and I was with him. He said we went after our dentist appointment.  He told me he was able to get the pain/antibiotic medicine filled the day before but they didn’t have the soliqua ready.  I didn’t even remember going to the pharmacy and didn’t remember anything about the soliqua. Once he told me this I was able to remember him handing me the pain/antibiotic medicine but nothing else.

Several times recently Roy has had to tell me something like the “going to the pharmacy event” that happened that I don’t remember. I question him and question him and still no memory of the event happening.

Earlier this week, I woke up when Roy came into the bedroom at 12:15 (right after noon) and picked up my arm. He thought I looked dead and said it scared the mess out of him:(  I went to bed at around 8 the night before and while I do tend to sleep until 9 or 10 am a lot of the time not awake at 12:15 is not normal. When I wake up every morning my routine is to check everything on my phone, weather, Facebook, emails, text messages.The day I woke up after noon while doing that, my nerves caused my hand to jerk several times so bad I dropped my phone over and over

This has happened before just a little bit this morning was the worse. I could have easily gone back to sleep then I was so tired but I stopped myself. When the jerking stopped I got up. I was way off balance for a long time after getting up. Later I was dizzy like I use to be a couple of years ago.

Right now my thinking of what I am going to say has just stopped. This is taking me hours to put together but my typing is good, my ability to put a sentence together is okay. I just can’t think through it.

Yesterday was been difficult but different than the day before.  We went to the urgent care here to get help for my cough. Since it was my first visit there, there I had to fill out forms. I’ve done this dozens of times, know all the answers but I could not remember a lot of the answers. I had to get Roy to help me. I never need help with those. He had to help me answer questions when I was in the room being checked out.

After that, we went to North Oaks Diagnostic Center for a medical test. I hid some rocks at the building next door before heading inside.  I got lost and scared trying to figure out how to inside. We agreed Roy won’t let me go off by myself in the future.

Wednesday was different but equally frustrating. When I got up to walk my legs and arms felt like they each had a heavy weight attached to them. The weight pulled my legs down into a crouch and I had to walk like that. It was so exhausting I couldn’t walk more than a few feet. While moving laundry from the washer to the dryer I was wiped out and had to hang on to the washing machine by putting my arms inside and hanging on.  I called Roy to help me and of course, he did. That weird weighted down feeling lasted all day. Cooking dinner was only accomplished by me sitting in a chair and Roy helping me. This was just a crazy day.

I only had a little bit of the weighted down feeling when waking up on Thursday. This and several other things left me and Roy frustrated and exhausted today.

This latest strong downward dip is a big unwanted step in my dementia journey. It hasn’t happened in a long time and pretty much overwhelmed me and Roy.

I really appreciate your prayers. Thank you all. I am looking forward to the next few days where we can stay home and get some things addressed while I am hopefully less confused.

It is 7:00  pm on Thursday night. The deep bad fog and confusion are mostly gone. Praise God! It will take a while to know what level my thinking and abilities are at now. Life is always interesting and God is always on His throne! And He is my God and I am His child. It doesn’t get any better than that!

 

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