Posted 7/27/23
Commit your work to the Lord, and your plans will be established. -Prov. 16:3
I think I speak for many caregivers when I say that, even in my case of being a part-time caregiver, the topic is ubiquitous in my day. It permeates my time and lives rent-free in my somewhat slumlord flat of a brain. My drive to work is a great example. (Am I a bit ill? 😉 )
(One note: technically it is dubious, legally, to use your phone while driving. Consider these “stock photos” from my phone if you prefer. They do make some good points, though….)
Off to the right as you drive Highway 13 from my hometown to work, you will see large sections of tree lines. It is extremely common to see a deer. While these are precious the first time you see one, not unlike my friends from Australia’s opinion of kangaroos, these white-tailed menaces can jump out at any time and destroy your car. You never know when something like this will happen. It is the Powerbuck lottery that nobody wants to win. Dementia is that way too. Especially in mid-stage, you never know when something will jump out and prove to be a danger. Falls, eating something you shouldn’t, did I mention falls?, med problems, wandering, etc…every day is a new deer.
Lots of warning signs as I drive in. Sometimes the warning signs are disguised as an ultra-hip PSA like “Buckle up…all the cool kids are doing it!” Dementia has lots of warning signs too: LINK or, if you prefer my shoehorn, this one: LINK Just as sometimes the warning is something else like the before mentioned PSA, symptoms of dementia may just be mimicking dementia and actually be a rash, a UTI, or one of dozens of other things. TALK TO THE DOC TOOT SWEET TO FIND OUT! It is critical to catch dementia as early as humanly possible to have the best list of medical options!
Sometimes the signs are blurry. Driving 70 and taking pictures lends itself to that. Married couples, many of whom have been married for 50+ years, blur the signs of dementia as best they can sometimes because of pride, sometimes fear of losing freedom, sometimes lack of knowing the topic, and sometimes because they have overcome bad things before…they will beat this too… Here are some good tips: LINK and LINK (NOTE: I don’t know the sources well for these two links, but the info is solid)
Directions and side roads everywhere! Some folks these days seem to be ok with pulling out in front of cars from these side roads and forcing you to switch lanes or hit them. Options options options everywhere for ways to go…and some lead the wrong way. In dementia care, to me you stay on the main road. The Alzheimer’s Association and your local Area Agency on Aging. While nobody is perfect, your odds of getting the right info and finding your way is better with these two. These side roads, promising cures and treatments if you just buy their book or their pills are a wreck waiting for a place to happen.
We have a lot of J-Turns on my drive. This is a J-Turn:
J-turns were sold to us as a way to prevent the cars from the random farm roads to the right from trying to cross perpendicular to the flow of traffic (and often getting T-Boned by oncoming cars). They work although there are now lots of glancing blows and small wrecks by the car driving 70 hitting the car driving 30 trying to get to the left lane to hook back into the other direction. Better, but not perfect. The technology isn’t available at any cost to fix this other than millions of overpasses and downramps…which still get wrecks. It is imperfect, but better. Leqembi and the rest of the Monoclonal Antibody drugs fall into this category of imperfect but better than the alternative. There is some danger. Brain swelling and bleeds (ARIA-H), both of which are monitored for closely and guarded against are in the range of outcomes for a small number. Tragically a few have even died in the clinical research. Even more tragically, every single person with dementia will die of it. If risking some side effects, which are no more common than any side effect, will cause glancing blows instead of T-Bones, it is a great thing.
I pass BB and CC highway. It reminds me of BeBe and CeCe Winans (and others singing the old Gospel songs like this one: LINK and this one LINK. Music is special. For some reason schools choose music and art to be cut sometimes when money gets “tight”. This is ridiculous. Music does something I consider miraculous with my mom and many of her friends at the memory unit: it unlocks the old them, even for a bit. I and many of them prefer the old hymns, but some prefer Elvis, the Glenn Miller Orchestra, and others. Period music works wonders. My mom relaxes more with music than without. That is invaluable to me. 🙂
This bad picture is the landfill. Yup…I drive by it every day. When you are evaluating a nursing home and, especially a memory unit, engage your senses. A good one typically doesn’t smell bad. Other senses shouldn’t be shocked either. Are call lights on and blinking everywhere? That means they do not have enough help. I will never forget the sights, smells, and sounds of some nursing homes I visit/have visited, especially my Grandma Applegate’s back in the 1980s. 🙁 This should not be…
I pass WW highway. I have had a lot of success on WW (Weight Watchers). I need to apply what I learn currently and resume this journey of weight loss. It is important in fighting off dementia to lower weight, blood pressure, and the like. The Mediterranean Diet can work within the parameters of WW. While it is mixed just how helpful the Mediterranean/MIND diets are, they are good for your heart and what is good for it is good for your brain.
Signs, Signs, everywhere signs… There are a lot of signs on my drive. Some are jumbled up messes, like this one. There are parts of all sorts of signs there, like a quilt. It is interesting and unique. If you study it you can pick out some things of note. Aphasia is kind of like these signs for some. Parts of the speech may be right. There are 3 main types of how this affects you, according to the Cleveland Clinic:
- Lopogenic progressive aphasia may cause difficulty finding the right words or understanding others.
- Progressive non-fluent aphasia may cause poor grammar or difficulty talking fluently.
- Semantic dementia may cause difficulty naming objects or understanding the meaning of stand-alone words.
Here is a great video from Teepa Snow talking about language problems in dementia (she can be a bit potty mouth, but I love her content!) : LINK
Thankfully there are a lot of cellphone towers on my drive. 🙂 Other than at the landfill area I have good signal. Comparing dementia to cellphones is easy peasy. First, to communicate with mom in her end-stage world, I have to connect. If I am using a US Cellular phone it will not connect even if it works some other places. To connect to her tower, I MUST make eye contact. As we talk about a lot, patients’ field of understanding seems to sharing smaller and smaller and more in front of their face. I have to get my face in a line of sight to her eyes to have any hope of connecting. Second, cellular takes energy. In disaster preparedness circles of my job, it makes me happy when some still have landlines. They don’t require electricity to work. A cellphone is a plastic toy without power. A person with dementia needs enough fuel to fight off meds and the disease to stay charged. If they sleep through everything, it COULD be over-medication, but it could also be just part of the disease. We wash mom’s face before we feed her many days to pep her up. Last, there are fads. New phones and services abound. Even in towers, change is everywhere. 5G towers are blamed for lots of things, for example. Lord help us when 6G comes out… Fads for causes and for cures are everywhere. As I mentioned before, be VERY hesitant of fads. Some are driven by agendas, by funding, and by other things… Be careful.
Several gun shops are on my drive. Probably a good idea because crime is quite bad for about 3 miles of my drive. I am a fan of the 2nd Amendment as I am of the entire Constitution. However, PLEASE be careful with your guns if you have a loved one with dementia at home. Paranoia is very common and it doesn’t take long for a mistake to turn tragic. Here is a website I consulted for that I find very helpful:
Whelp…this picture wasn’t great. It is a picture of the sign for Fantastic Caverns. It is an amazing cave I drive past daily. It is a VERY rare drive-thru cave. It is stunning. I have a loved one who was tempted to apply to work there, but you also have to be able to drive a train of cars that meanders through some tight spaces underground all over this amazing spelunker’s paradise. Driving it would probably be hard. See the previous link of the website I consulted for for a discussion of the challenge of taking the keys away from a person with our disease. 🙁 It is hard…very hard. You will probably need help.
The Wonders of Wildlife Museum sign is also in route. It is a visual masterpiece inside and out. There is soooooo much to process that it takes days and there is nothing that would hurt you there. Now imagine you are not sure what hurts you and what doesn’t. That is likely what happens to someone struggling in cognition. Unsure of steps, things everywhere so much so that they are hard to process… Similar yet with an opposite emotion…
Lots of blasting to flatten the roads on the ole highway. 🙁 Lots of blasting by this stupid disease too. 🙁
Objects are closer than they appear…or not. This pie in the sky sign said I was roughly 7 minutes from work. LOL. As Bugs Bunny might say, “He don’t know me vewwy well.” I could make it in 7 minutes if I hit every light and there wasn’t stoned homeless people darting across the street in front of me, like there was this morning. Probably 15 minutes on a good day… In dementia, “Confusion with time or place” is a warning sign as is “Trouble understanding visual images and spatial relationships”. These can lead to problems ranging from missing appointments in the former and falling or crashing your car in the latter.
Springfield was the home of the second Diverging Diamond in the world when it got one in 2009. Here is the overview of the intersection I cross daily. A diverging diamond is an intersection design that is designed to alleviate various traffic jams and it seems to help somehow most days. However, when you enter a Diverging Diamond the first time, you immediately forget what on God’s Green Earth you are doing. You come to the first stop light and you verve into what feels like oncoming traffic, crossing the other lane of traffic who is feeling the same. You do this at a stop light, so you are not criss-crossing cars and ramming into anyone as long as everyone is obeying the signs and signals, a reality that usually works. Confusion abounds at first until you get your bearings about you. You are so used to driving on the right that driving on the left seems extremely wrong. When you are caring for someone with dementia, there are some rules that have always been that need to change at a certain point:
- No correcting– Your loved one has told a story the same for 30 years and now it changes… If they don’t seem agitated, go along with it.
- Lying is ok– OK, I am never a fan of lying to deceive. The Bible refers to it as an abomination and says All Liars will find themselves in a lake of fire. Serious stuff and still valid to this day. However, I believe Christ cares deeply about our motivation, not the action. In the Sermon on the Mount He has states clearly a few times phrases that begin with “You have heard it written that…” and follows up with “But I tell you…”. While it may seem like you are about to be given license to be more sinful, He is actually telling you that it isn’t enough to not murder, for example, but just hating someone is murdering them in your heart. Same with sexual sin. It is about the HEART. So, if your loved one asks, for example, how his parents are doing (who have been dead for 30 years), please give yourself grace NOT to say they are dead. Therapeutic fibbing is ok if you aren’t doing it to hurt them, to gain something, or the like. You are being loving by not telling all the truth. I am not telling you to lie Willy nilly, but telling the previous example that their parents have never been better and are busy isn’t really lying if they are in heaven… Make sense? 🙂 Grace. Heart. Love.
- Roles reversed– It is hard dealing with a child being the parent. Very hard. Especially if the parent was a harsh, head of the family who had that role quite clearly. You will get better at it…
- Advocating when you are not naturally that type– I am a fairly conciliatory, passive type. I love to be loved and I hate to be hated. I have had to advocate much more the last 5 years and it gets easier… I, with my siblings and my step-dad are her only biased advocates.
- Becoming an expert to help a master– You may have to help your loved one do something they used to be great at. It seems unnatural, but you will figure it out.
I cross old Route 66 on the way to work. Nostalgia rules! Your loved one agrees… Chances are they will remember things a long time ago longer than what they ate. Enjoy memory lane!
I pass a dog park. Those suffering love a pooch. Pet therapy may be something either the nursing home and/or hospice can arrange. There are also some neat fake pets that become quite popular as stages progress…
I pass a for-profit scientific research facility. I am sure they do great work and provide needed data, but, for my part, I will stick to Washington University, KU Med, Vanderbilt, and the rest of the endorsed research facilities. Trial Match is a great resources in helping find studies if you are similarly-inclined…
I pass a tombstone maker. It is a daily reminder that there is no cure for dementia.
I pass the Elfindale Mansion as I get close to work. It is now part Bed & Breakfast and part church. It has parts that are wearing out, but it is fighting to stay as itself. My mom is a better fighter…
I pass this Bass Pro Shop sign. We are home of Bass Pro and they are a great neighbor. 🙂 The sign says “50 Years of Late Shifts”. I think my friends with a parent or spouse who are wanderers because of sundowners can relate to a life of late shifts…
When I finally make it to my parking lot and the gate closes behind me, I exhale and hop out and get to work. 🙂 It is one happy place for me at SeniorAge even when times are not super happy. We all need a happy place. Mom’s happy place was at the piano. Mine is generally service in making this mess into somrething I hope is a little better. There is hope, friends, on our life’s journey. Search out the joy among the tears and the fun among the not fun. Help, one way or another, is on its way…
#EndALZ
Update: Mom is still aspirating. Last night as I fed her and my sister took the baton and hung out with her she had some painful shuttering here and there. I am not sure if another seizure is coming soon or if it was a fluke, but we got her some pain meds and a breathing btreatment and it seemed to help. Praying for peace and comfort in her continued drive home…
P.S…don’t text and drive. Don’t take pictures either. Do as I say, not as I (always) do.
