This dementia is progressing faster than I thought. I am still in disbelief that I even have dementia. It is quite the journey.
The silence of the house warms my soul, I need that. Chaos, disorganization, noise, can put me over the edge, I have a heightened sensitivity level from what I understand, so everything could be exaggerated. Also, I don’t tolerate sunlight very well- but who knows, could all be in my head!
I am waiting on test results and getting a Neuropsychological test done in order to see the progression. It is a proud moment that I was able to do the PET Scan without any sedatives or support. Usually, I’m given a megadose of ‘Happy’ since I’m claustrophobic, but since I got a pacemaker in April, I no longer can have an MRI. Praise Jesus and the Pet Scan machine is wider and shorter. It’s like the ones you see on Grey’s Anatomy and I did it!
Life’s been tough, but it seems like it always is. And not only for me but for a bunch of you reading this. I am blessed at the end of the day, I have everything I could possibly need. I am loved.
But indulge me just for a bit- and walk with me thru an ordinary day with dementia… I wake up early every day, sometimes out of necessity, since my wife is still working or because my body just decides to start the day. Today, it was at 4:30 am, I was as awake as a barista at Starbucks! You know they gotta be on their toes in order to serve you your necessary morning cup of Joe!
I remove the CPAP mask from my face- the Darth Vader one and hang it on its hook. We have a love-hate relationship – many a night, the mask ends up on the floor. But I’ve come a long way, I’m so competitive with my daily “score” that the App provides, that I try to “top” it the following night. Gosh, I gotta get out more! I have to go to bed exhausted with that crap on my face cause otherwise, I’ll be fidgeting with it so much, pulling it up, pulling it down, taking it off and forgetting how to put it back on, tightening it only to loosen it 2 minutes later. My brain is a very busy place! I especially love the gurgling sounds that the tube makes -I drive myself crazy. So I wonder how many “effective” hours of sleep have I had each night since starting the treatment since I’m constantly waking up with gusts of wind of up to 50 mph in my face!
Anyway..it’s time for breakfast-I put water in a pot for an egg but leave it in the sink. “Forgot to take some of my meds, I gotta take them before breakfast.” So I go into the bedroom, open the bottle and can’t remember if I’m opening it or closing it. Did I already take it? Oh- who knows- what the heck, I’ll take it again.
I start to make the bed and then notice the trash can in the restroom, needs emptying. So what do I do? I empty it out and then realize the dogs don’t have clean water. I’ll get that in a minute. So I go to the kitchen, can’t remember why I’m there, and then walk to the bedroom like it will jog my memory. That doesn’t happen often with dementia. So I continue making the bed- totally forgot I was doing that, and get interrupted by a phone call. Well, that blew everything out of the water.
I go to the kitchen because by this time I’m starving-throw some bread in the toaster, smear some butter on it and call it a day! Oh damn, I forgot about the egg-oh, well. Ok, ready for my shower- ah crap, didn’t finish making the bed, in fact, I need to change the sheets.
I strip the bed of its bedding- haha- and I’m ready to put on the sheets when I forget how to make a bed. I kept putting the sheet on wrong, it didn’t fit and it took several tries for me to get it right. How long do you think that I’ve been making beds?? You guessed it, a lifetime. I know how to do this. I really do. Once I figured out the sheets, I had to get out the comforter bag so I could see how it looked with the two stripes. There were only two. It’s not like it was rocket science. I couldn’t figure it out, even though the tags were where they usually are. Wow- glad nobody was here to see me.
So I take my shower, get dressed- thank God, I basically wear the same thing all the time so there isn’t much planning to do- workout clothes, a T-shirt and sneakers. Oh, and the baseball cap, can’t forget that! I used to get so anxious with school, laying out my clothes the night before, making sure I woke up with double the amount of time just in case I needed it. That’s the way I always was- from childhood until my last year of teaching. It’s hard to program the mind to relax after all those years, but it is such a blissful feeling, being so blessed, knowing that God is taking care of me and I am able to be at home.
So I’m ready to go to the gym, it’s my only form of socializing. The class I take is for “mature” women- I am probably one of the youngest. It’s PE all over again, mixed with some dance, multiplied by a bunch of hormonal, overheated women. Needless, to say, I’m so busy trying to follow along and repeat the steps in my brain, that I don’t talk much in between. It’s all about not looking like a fool. Actually, I could care less, but I do try to keep up. I have my good and bad days-I couldn’t handle the “Zumba Gold” teacher- way too busy for me-can’t coordinate the arms and the legs at the same time- I have to pick one; it doesn’t necessarily make for a fun class. If I am “off”, then my dance moves will show it. Today I couldn’t figure out how to tie something to the back of my chair.
So simple, so easy, so terribly frustrating. So I’m really tired after that class, my brain is mush, so I go out to the parking lot and of course, can’t remember where I parked the car. Thank God, for that little red button- but I’m not the only one lost in the parking lot today! Now it’s time to go home- I get to the corner, the same corner I turn left on every day, and I don’t know what to do. “Is this where I turn left? Do I go in that lane?” It was just for a split second that I didn’t know what to do. Ok- I’m good, I’ve got this. I gotta get home, I’m exhausted…
Jean shares more of her journey Jerome Is Driving Me Crazy (Crazier)