Posted 10-28-19
Howdy fellow Digital Cornbread nibblers! I trust you had a good week and, if not, I am sorry. I know many of you are caregivers, many of the 36/7/365-6 variety, and I thank you for taking the time to come by today after a long weekend. I had a busy one, as they all seem to be in increasing measures as I age. Mom had a good weekend again. She has plateaued and, all things considered, she is doing just dandy for an end-stage Alzheimer’s/Mixed dementia hospice patient. I look forward to seeing her smile tonight again. 🙂 Care meeting is Halloween and I will go with bells on and with sugary treats on hand for the staff.
I was thinking a tad about the word courage this weekend and its varying definitions. I supposed I didn’t have a lot to be afraid of in comparison to our subject matter, but we all have things that require courage. What got this topic bouncing in my head was going to Celine Dion’s amazing concert in St. Louis Saturday evening. She is touring just ahead of her new album called Courage which is available in mid-November. So, you might ask “How does Celine and her album remind you of dementia, blog boy??” Let me count the ways…
- The first verse and chorus of her new title song “Courage” reminds me of the tens of millions of husbands and wives out there who daily need courage to make it through the day with a dying loved one. Celine knows tragic loss, and she covers the topic in words amazingly well. Similar to the cancer that took Celine’s husband a couple of years ago, this stinkin’ disease is no respecter of people. People of all races, genders, ages, sexual orientations, socio-economic levels and any other subcategory you want to add get and die of this hot mess. It doesn’t care a bit. Here is the lyrics to “Courage”:
I would be lying if I said: "I'm fine"
I think of you at least a hundred times
'Cause in the echo of my voice I hear your words
Just like you're there
I still come home from a long day
So much to talk about, so much to say
I love to think that we're still making plans
In conversations that'll never end
In conversations that'll never end
Courage, don't you dare fail me now
I need you to keep away the doubts
I'm staring in the face of something new
You're all I got to hold on to
So, courage, don't you dare fail me now
- We sat in the only seats we could afford. We were in Section 303 at the Enterprise Center in St. Louis. It is a hockey arena at about center ice but up at the top section. They were super seats although we were in a steep section which made me have intrusive thoughts about what a rapid descent it would be to try a mosh pit that high, supposing that the 300 women in front of me could keep me above their collective heads under the crushing weight. My filming/shapshotting was a huge challenge, though, until my son showed me how to focus my phone in the dark. (Note: I am a tech director.) Once I had some help, I could see what was going on in pictures. This is what I try to do with this website and what Stacey and I try to do with the support group: Help you see closer and get in focus what is going on and how to live with this umbrella of diseases.
- There is danger of irritating people when having courage. There were four girls two rows in front of us who, by the time the show had began, had drank at least a gallon of “liquid courage”. Sometimes this liquid courage makes you have courage in the face of common decency…and that was the case with these girls. They stood during the opening song and number. They were the only ones in the building not on the floor level standing, and, due to the viewing angle and the slope of the stands, they blocked at least 30 people from seeing. Finally the usher flashlighted(?)…flashlit… them down. (Note: you could see perfectly and every bit as good sitting as standing. Similarly, we who care for loved ones can be pretentious, boastful, and downright jerks with other family members when we serve our loved one with the disease. Yes, they may not help much. They may throw in suggestions that they have no clue about. They may oversimplify. However, more often than not, if we give them the benefit of the doubt we can see that they are trying in their own special way. Give them some tasks. Help them help you. I realize that it is just extra work, but they need help getting involved….and you need them too. Fight sinful pride. Fight negativity. Fight depression. Let them help and get them involved. I am an IT expert, but needed and accepted my son’s help…and was far better for it!
- The higher the event/mountaintop, the deeper the river valley that awaits when you think of survivor/caregiver guilt. It was a great weekend and a great concert. We rented a 2019 Mustang 5.0 and drove it instead on taking Tempo One. The car had 160 MPH at the right edge of its speedometer and the Tempo sports sedan is doing good to hit 60 MPH downhill. We ate well. We shopped well. We saw an amazing ferris wheel next door that was purple in honor of the St. Louis Alzheimer’s walk. Then, on the way home as my son slept, I thought for 100 miles or more about mom, wondering if she was OK and wishing I could have called and told her about it and feeling guilty for going for some reason. While she exudes courage living with a bunch of strangers with a degenerative brain disease, I feel artificially courageous by driving in rush hour traffic in St. Louis…then was sad.
- When we arrived at the concert…did I mention this:… in our rented 2019 Mustang 5.0 convertible (sorry…I like to say that/play rich sometimes), we finally found a parking garage and drove round and round and round until we found a spot on the roof! We tried one spot down lower, mind you, but the police quickly ushered us away saying that wasn’t for us. We were confused, frustrated, and finally parked in the rain on the roof. I, having no experience driving cars worth more than $1,000, couldn’t figure out how to set the car alarm on the remote in the dark. I did what I thought it was and started heading toward the elevator when my son said “Dad…I think you just started the car”. Sure enough…no alarm and I started the car. Surely after the proximity changed enough, my fob would have turned it back off?!?! There were also 50 gauges and buttons and levers that I was unfamiliar with, but I was game. At one point I thought I was changing the cruise speed or perhaps the radio volume, but I actually manually downshifted with the steering wheel paddles from 10th speed to 8th with a grunt. (2 notes here: The Tempo One is much closer to a one speed automatic than a 10 speed. Secondly, never buy rental cars that I drive…) I experimented in the car, trying to find the basics of how to drive again. I couldn’t figure out how to pop the gas cap cover. I couldn’t figure out the trunk. The seats blew me away… All cool features and all frustrating. NOW… imagine when EVERYTHING that used to be easy to you was replaced with something hard/foreign. Oh, and your ability to process and troubleshoot the situation is deeply impaired. Figuring out how to physically and mentally operate the shower and how to get yourself a pot of coffee…all gone. Driving? No way! As memories and cognitive/spatial perception/time/date challenges mount, every single thing becomes infinitely harder than me driving a convertible sports car. Such is the life of a person with mid-stage and later-stage dementia. Now do you understand why they are so panicked and/or mad? It takes courage just to get out of the bed…likely at 3pm since you stayed up all night with sundowners.
- In the end, we were fighting our way through tens of thousands of satisfied (and many tipsy) concertgoers when a mass of people surrounded a lady nearby. As we got closer we realized that it was a man dressed up to look like Celine and there was a line to get pictures next to the “celebrity”. That fellow was courageous wearing 6″ heels in that crowd. Not sure the tie-in exactly here beyond briefly saying to be careful of falling in the dementia world. Falling is a precursor to a decline to many if not nearly all patients with this disease. Clear paths. Use a walker. Get help. The state is content with a “Right to Fall” law to protect your loved one’s freedom to fall on his/her face by withholding any help through restraints and bed rails. It is up to us to keep them safe from life-stealing falls. They may not have 6″ heels, but they often walk even less safely than I would had I been wearing them.
These folks have more courage in their pinkies than I have in my whole body. We need to fight for them, advocate where we can, love them, hug them, pray for them, and do what we can until a cure is found for this mess! Courage indeed!
Concert critic Mark’s opinion: She is amazing! Great singing, great set, outstanding song list, stunning dresses/outfits… It was truly a great time. She seems like a wonderful lady.
Bonus fun videos with her on Carpool Karaoke: Link 1 Link 2
#EndALZ