Posted 12-2-19
Howdy all! I hope you had a wonderful Thanksgiving weekend and that you had some time to rest and reflect on the multitude of God’s blessings about which we can all be thankful. I was super busy all weekend long, as is the norm for my life, driving here and there and everywhere as the days passed by.
Speaking of driving, I was thinking a little about dementia as I drove my muscular little 1991 Tempo SS Sports Coupe to work this morning (I refer to her as Tempo One). As you may recall from an article a couple weeks ago called Yahtzee, she had 66,666 miles on her odometer that fine day. Well, today this little white blessing crossed a couple of mileage thresholds on the way to work that screamed article topic, so off we go! 🙂
Note: This is a rare glimpse inside of such a fancy car. Think Champagne Wishes and Caviar dreams here… Consider this an early Christmas present. 😉
10 Things You Can Learn About Dementia from the Dashboard of Tempo One:
- Sometimes it seems like it is all uphill. My Tempo turned 67,891.0 miles today. (Yup, over 1,000 miles have passed in the last couple weeks. 🙁 Welcome to my life) I had to slow down in the morning rush hour to get you this numerically-sweet picture. You are welcome. 🙂 I found it pleasing that the numbers were sequential from 6-10 and it reminded me that things seem endlessly uphill in caring for a loved one with this umbrella of conditions. Even though I am not a 36/7/366 caregiver this year, I still have many…seemingly countless hours in person or in my mind/heart thinking on and serving mom. It seems like it will never end, I say selfishly but realistically. Then I am reminded that there is, indeed, an end to every Alzheimer’s story. I am praying and working through every possibility I can come up with to change that end for mom and the Sweet 17. Until then, up the hill we go. The view will be nice there, I am sure.

- Ups and downs abound. Also on the drive today, I encountered this numerical Jumping Jack: It reminded me that, even with the seemingly uphill climb trying to help mom, there are always ups and downs. The nature of the disease, especially in mixed dementia and a couple of other varieties, is a roller coaster. One day/week you may experience a great day/week…more lucid than normal, less anxiety, fewer sundowning experiences, etc…and the next can be chaos. Routine seems to be a key in some stages of the disease. If he or she has the same schedule, with as close to the same environment as possible, things work better than when everything is out of whack. Events such as physical problems (a fall, a UTI, respiratory infections, constipation and the like) or calendar problems (Thanksgiving parties, too many visitors, a new bath person or time) can trigger all sorts of ups and downs that may last for days.

- That stinking clock! Let me preface this with some credentials: I have an MBA with a technology management emphasis. I worked in Circuit City for several years. I have owned 2 Radio Shack franchises among the retail stores I have owned and operated. I have been an IT director, in total, for nearly 15 years. I am NOT a tech dummy. However, I cannot set the time in my car radio in Tempo One! Similarly, in a roundabout way, the mind of a person with dementia has two problems in this realm: He or she loses track of time/date concepts and struggles with simple tasks (note: my radio is NOT simple). These are to be considered warning signs or dementia/actual aspects of early stage of the disease. I don’t mean things like when you forget whether it is Thursday or Friday or the date of your 15th grandson’s birthday. I mean when you forget what year it is or whom the president is. I mean when you forget your Social Security number after being in the military for 30 years or forgetting what tool removes a nut in a car when you are a mechanic. Big red flags and signs to talk to your doctor. (Quick note: Bill Gates couldn’t figure out my stinking radio!)

- The meter on the left. It is broken! The Tempo SS Sports Coupe, until about 2 weeks ago, had a broken thermostat. That made the fluid that should be allowing for heating to function to be kept from its chore. Therefore my car wouldn’t heat or defrost the windows. Patients with dementia, often if not always at some time or another, have trouble with temperature. What seems hot is cold or likewise. Mom used to wear winter gloves while we would go for walks when it was 90 degrees outside because she couldn’t remember/process the stimuli she was feeling. Perspiration, or lack thereof, can be a big problem, especially to someone who cannot explain what hurts. Keep an eye on their fluid consumption and avoid extremes!

- Knowing your limitations. The Tempo One MAY not actually be a sports car to many of you. Note in the picture below, her speedometer only goes to 84 MPH. However, I feel like she is a sports car inside. She loves to pass Corvettes and an occasional muscle car who underestimates her speed prowess off of the line at a stoplight (when the other driver is still ordering his Olive Garden pickup on their phone and doesn’t see the light change). For someone with dementia, two things come to mind. First: lapses in judgement, a warning sign of dementia. I hear waaaaaay too often about a patient with dementia getting a home stolen from him after a long career as a CPA or CEO…simply because he or she gets overconfident in his/her remaining abilities to process the validity potentially bad transactions. (Yes, there are demons from the pit of hell who pray on these folks. 🙁 We have to fight back! ) Second, once firmly grasped by the disease, patients overestimate their ability to get around and end up falling either when walking or out of a wheelchair. Chair alarms won’t even stop them…and it is very sad because well-meaning folks believe they have the right to fall on their faces to avoid common sense restraints.

- Cruising along. How easy it is to cruise along in life and not notice dementia’s warning signs. This is a repeat x 100,000,000 , but, if you are seeing some changes in any of the list of warning signs, get checked. There are lots of things that look like dementia but are not. There are some treatments that help extend (only) the early stages of dementia that you can take if you catch it early enough. Don’t put yourself on cruise and let time pass like I did with mom.

- Sometimes older is better. Note my Tempo’s sporty cassette player? (Sorry the picture isn’t ideal….I was driving
7965 when I took it. Trust me…it has a cassette deck. It does work, though.) Cassettes are making a comeback, but they are not very helpful in 2019 when you want new music to play. In dementia, oftentimes older memories stick better than the fresh new ones. Perhaps because of the entrenched nature of the pathways or some other interesting but not understood phenomenon, most of the Sweet 17 can remember the 1950s much better that they can remember what they had yesterday for lunch. When connecting with a patient, remember this. Play period music. Mom and the rest love the old hymns. Bring up the good ole days…not in a quiz but in a “matter of fact” language. Your chances are better of connecting, more often than not.

- Environment matters. My first attempt to take a picture of my dashboard was a mess. If you look closely enough, you can see that my radio was on 105.9?!?! But, in my poor camera’s defense, I was driving, listening to music, it was dark and my phone is junky. The environment makes a huge difference in photography and it does the same in caring for a loved one. A safe, consistent, not loud/over-stimulating environment makes all parties happier when dementia is involved. For the sake of safety, keep it well-lit until bedtime, then darken it somewhat, when possible, to (try to) fight sundowners.

- Read between the lines. Back to the speedometer. Notice the smaller numbers below the MPH? Those are metric, the standard we would be using if we were conforming like 90% of the rest of the world does. But, one number signifies the other number if you just follow the little gauge’s arm. Was I driving 26 or was I driving 40? Yes. Similarly, listen closely to your late-stage loved one talk. I can hear cadence in my mom’s speech now, signifying at least whether she is making a statement or asking a question. When she is asking a question, I try even harder to understand and respond. I try to actively listen. Teepa Snow, in this excellent video (and others), mentions this too. The patient is talking using speech technique, but the words get so messed up that communication doesn’t happen. It is sad, but a way to empathize is to try hard to respond. I parrot back what she is saying or say something neutral like “Sounds like it may be true” and watch her response. If she smiles, she is cool with my response. If she grimaces, I probe deeper. It is hard. We are using different numbers (languages) that mean the same thing. Find common ground and do your best. That is all you can do.

- Time is a blur! Do your best to enjoy your time with your loved one. I know it is a hard situation. I do. I really do. 🙁 But find joy in serving him or her. Hug your loved one. Sing a song. Break out the pictures, not in a quiz mindset but a reminiscing one. “We used to love to fish!” is so much better to say than “Remember when we used to fish?” when holding up a picture of you fishing. If you or your loved one are/is newly-diagnosed, take the opportunity to rejoice in the early stages. Write down stories. Work through the hard questions. Get a plan. Tell loved ones what you need to tell. Even with early-stage meds like Aricept (if you can tolerate it), these early stages, while hard, are better than the later ones. Time is a blur…use it wisely.

Thank you for riding in with me to work today. I hope you liked the drive. 😉
Update: Mom had a good weekend. She had no shopping stress, no long lines at Wal-Mart, no searching for parking and no complaining for a rain check when her items was out of stock. She did have a lot of Andy Griffith and M.A.S.H. and the weekend was fine, thank you. Praying for a cure before she starts declining again.
#EndALZ #EndAlzheimers #Walk2EndAlz #AlzAssociation #GoPurple #Dementia #BlackFriday











11. Splurge on the occasional upgrade?
I have so much tied up in clothing, I cannot afford to upgrade the ride. 🙂
Thank you.