Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you. –Phil. 4:9
It has been a long week. I am kind of pooped and ready for some mental, if not physical relaxation. To kick this weekend off, I am taking my kids to see one of our favorite slightly irreverent movies O’ Brother Where Art Thou? at our amazing downtown theater, the Gilloiz. Quotes from this movie are the basis for this piece today.
- I am sorry in advance. 😉
- (Shoehorn must be stuck in my shaving kit next to the Dapper Dan?)
- I am sorry if you haven’t watched this movie…you may not get the references. Skip to the end updates or a previous piece if you prefer…or, better, watch this movie, then read. 🙂
- This movie is irreverent, involves racism/the KKK (and mocks it for the most part), and is not a Christian movie. Viewer discretion is advised…
- This movie is 1 part Homer’s Odyssey, 1 part Dukes of Hazzard, and 1 part Forrest Gump…with many other themes spread throughout. It is odd, but quite funny and has some good lessons at times. You have been warned.
10. Pete: Who elected you leader of this outfit? Ulysses Everett McGill: Well, Pete, I thought the leader should be the one with the capacity for abstract thought, but if that doesn’t seem to be the case, h@$*, we’ll put it to a vote.
-In dementia caregiving, as I have said many times in our little table, it takes a team. There are too many variables and specialties. You need:
- someone good at finances
- an elder law lawyer to help with the many tricky things that will come up
- a medically-minded person
- an organized person
- a prayer warrior or 20
- respite helpers for breaks
- general helpers
There are more people it would be very helpful if you had on your team, however, the most important person is a leader. You or someone you trust needs to orchestrate the many actions required. You need to be a delegator and a planner to be sure things go smoothly. This leader may or may not be someone super close to the situation.
9. Tommy Johnson: I had to be up at there crossroads last midnight, to sell my soul to the devil.
Ulysses Everett McGill: Well ain’t it a small world, spirituality speaking. Pete and Delmar just been baptized and saved. I guess I’m the only one that remains unaffiliated.
-Can I just say here that your spiritual walk will be tested. There are so many ups and downs in the process of taking care of a loved one with dementia that I cannot recommend enough to examine yourself, spiritually, as you enter this realm. Know this…peace in the storm isn’t the reason we repent and believe, (we do that for the forgiveness of sins and to inherit eternal life), but it sure is a wonderful benefit of faith.
8. Ulysses Everett McGill: Why are you tellin’ our gals that I was hit by a train?
Penny: Lots of respectable people have been hit by trains. Judge Hoover over in Cookville was hit by a train. What was I gonna tell them, that you got sent to the penal farm and I divorced you from shame?
Ulysses Everett McGill: Uh, I take your point. But it does put me in a d$#@ awkward position, vis-à-vis my progeny.
I feel like I need to say a thing or two here about lying. I feel like there is lying and there is LYING. Lying with the intent to deceive or benefit at someone’s detriment is bad/a sin/verboten/against the rules. However, lying with the intent to do good/not do bad is different. In the Bible, it is a “heart issue”. It is a hard topic because it is a benefit to not have to face the sadness of telling truth sometimes and the temptation would be lying when something else (redirecting) might work just fine. Don’t lie for gain, but if your loved one with dementia asks, for example, how his/her parents are doing…and they have been gone for 20 years…tell them “Never better!”. That isn’t necessarily a lie, just a massaging of the truth with some really eternal truth mixed in. This is so hard to do sometimes. Sometimes you will be called out on it too, either by them or someone else. Just do what is right and what will do as little harm to someone already struggling as possible and things will be ok.
7. Penny: Vermon, he’s got a job. Vermon’s got prospects. He’s bona fide. What are you?
Kind of an odd tie-in, but one of the things that deepened my empathy for non-loved ones with the disease is to get to know them. In the Sweet 17, for example, I learned that there are: multiple teachers, a police officer, a business owner, several farmers, some housewives, and a few other occupations represented. The more you learn about folks with this disease, the more stark a contrast you see with where they are in the disease and where they were…and it will break your heart for them and drive you to want, even more, to help.
6. Ulysses Everett McGill: I detect, like me, you’re endowed with the gift of gab.
I have discussed the challenges dementia is to speech (Aphasia) many times. Here is a solid link on speech difficulties in dementia. Primary progressive aphasia is a form of dementia that is usually a facet of Frontotemporal Dementia but can be present in other types of dementia as well. Speech challenges range from not having the right word (often early dementia) to making up/fumbling words (often mid-stage) to being essentially non-verbal (often end-stage) and, as with nearly every symptom of this disease, it varies by the person. My mom, even now at the end, sometimes has the gift of gab, although only she knows what she gabs.
5. Everett Ulysses McGill: Say, any of you boys smithies? Or, if not smithies per se, were you otherwise trained in the metallurgic arts before straitened circumstances forced you into a life of aimless wanderin’?
Oh, wanderin’! Sigh… Here is a great article on the topic: LINK. I don’t have specific statistics for the number of deaths caused by wandering with dementia, but I am sure they are underreported and misreported as wrecks/other accidents. This is a critical consideration of aging “in place”, or in your home. Can you be kept safe and/or away from wandering and getting lost? My mom lived a block from a major highway. She wandered…a lot. This was a factor in our decision to place her because moving her and my step-dad was a bad option and she was a moment away from a pedestrian fatality. It is possible to wander-proof the house with cameras and door/cabinet locks, but it is not only a significant challenge, it makes life a stressful mess for the caregiver as well.
One other note for the unaware: memory units are typically lockdown units. They, pre- and post-Covid, will allow access with either a key or a keypad code. It is sobering and ominous to enter these wings, but it is the only workable way to keep these poor souls safe aside from assigning someone to shadow each of them (and violate their privacy and negatively impact their quality of life). Behavioral health hospitals for seniors (see many of my early articles) are even more locked down, with limited visitations and higher security. Be prepared…this was a challenge to deal with.
4. Ulysses Everett McGill: Me and the old lady are gonna pick up the pieces and retie the knot, mixaphorically speakin’.
One of the saddest aspects of dementia is the tragedy it does to a marriage. Mom was only 64-5 when diagnosed. That is supposed to be the time when you can finally start to see the world and live a little. Money is often in place, the kids are moved away (and you can enjoy the grandkids). However, dementia comes in and devastates. Do you need a further reason to fight the disease and to try to prevent it? Here are some good tips for prevention: LINK. A strong marriage through dementia is, frankly, the best advertising for marriage and for Christianity that I have ever seen.
3. Homer Stokes: These boys are not white! These boys are not white! H$&*, they ain’t even old timey!
Lots of (rightful) mocking of racism and the KKK in this movie. However, the quote above directly reminds me to tell you that dementia “hates” everyone equally, but it hates some more than others. According to the 2021 Facts and Figures Report offered by the Alzheimer’s Association:
- Older Black Americans are about twice as likely to have Alzheimer’s or other dementias as older Whites.
- Older Hispanics are about one and one-half times as likely to have Alzheimer’s or other dementias as older Whites.
- Black Americans and Hispanic Americans are more likely to have Alzheimer’s and other dementias, but are less likely to be diagnosed than White Americans.
- Here is a very helpful publication on race in dementia: LINK
Also note about being old timey:
According to the Alzheimer’s Association, cases of younger onset dementia in the US number in the hundreds of thousands and are increasing. Up to 5% of all cases are in people under 65 (younger-onset/not old timey). When you hear someone call the disease Old Timer’s disease or when they say only old people get it, please help me correct them. I know, we are Don Quixote fighting windmills, but hundreds of thousands of younger folks, including someone I know who is in her 20s, are struggling and need our help too! (Soap box moment: How dare someone say: “that only happens to old people”, whether it be dementia, COVID, or anything?!?! Since when have we LOST value with age??? Such is what you get when you devalue certain types of people… These are nincompoops who need to be lovingly corrected. People who devalue seniors are no better than racists, in my book. )
2. Blind Seer: You seek a great fortune, you three who are now in chains. You will find a fortune, though it will not be the one you seek. But first… first you must travel a long and difficult road, a road fraught with peril. Mm-hmm. You shall see thangs, wonderful to tell. You shall see a… a cow… on the roof of a cotton house, ha. And, oh, so many startlements. I cannot tell you how long this road shall be, but fear not the obstacles in your path, for fate has vouchsafed your reward. Though the road may wind, yea, your hearts grow weary, still shall ye follow them, even unto your salvation. (Quote link)
Can I promise you a whole lot of positive experiences in caring for your loved one with dementia? No. I can promise you that there are opportunities for a few good times ahead if we are always watching. There may be more (many more) bad ones than good, but the good times…those lucid moments at the piano or while looking at pictures…can carry you through. Focus on the good. Focus on what is left, not what is missing. When your loved one thinks they saw a cow on the roof of a cotton house, have fun with it. 🙂 Will there be startlements? You bet your soggy bottom….but you will slowly get more used to them. As I mentioned before, get help. Build a team. The road will wind, but with help, you can make it.
Pappy O’Daniel: Sounded to me like he was harboring a hateful grudge against the Soggy Bottom Boys on account of their rough and rowdy past. Looks like Homer Stokes is the kind of fellow who wants to cast the first stone.
Pappy O’Daniel: Well, I’m with you folks. I’m a forgive-and-forgettin’ Christian, and I say, if their rambunctiousness, and misdemeanoring, is behind them…
[turns away from the mike, towards Everett]
Pappy O’Daniel: [no-nonsense] It is, ain’t it, boys?
Last thought: Be forgiving. Who deserves forgiving? Here is a partial list:
- Your loved one when they say/do something mean/uncool/inappropriate/harsh.
- Your loved one when they get the story wrong.
- Your loved one when they tell the same story again.
- Your extended family who do NOT help enough.
- Your extended family who help too much.
- Your extended family who know more than you but are NOT there in the trenches.
- You. Forgive yourself and do your best to help your loved one in this challenge. Will you fail here and there? Yup. Have you failed before? YUP. For believers, remember, too, from what all you have been forgiven…and be quick to forgive. Keep your head up, take care of yourself, and try harder tomorrow.
- and, if you are mad at God, forgive Him. Know of His goodness. Know of His love and His everlasting care. Know that He has a plan. Read your Bible. Pray. Meditate on the Psalms. Don’t give up…cling to Him.
Is this movie a great piece of American literary skill that will be as popular 100 years from now as it is now? Not likely. It can, though, show us a good evening and just might teach a thing or two at the table. Maybe. (Putting shoehorn back next to the Dapper Dan)
Mom update: In had a nice visit with mom yesterday. She was smiley and generally awake, a pleasant surprise indeed. She responded with “Yah!” a couple of times when we said things. I don’t think mom has ever seen the movie I mentioned here, but had she, I suspect that she would have been amused and would have noticed the piece for the comedy masterpiece train wreck that it is. Her rash has cleared up and she didn’t have a fever. All seems pretty darn good, all things considered.
Fundraising update: We are over 1/3 of the way to our goal of $5280 in my Runnin’ Til I’m Purple event in June. Here is a link should you feel led to donate:
Last note: Mom LOVES “You Are My Sunshine”. We sing it often and it is featured a time or two in the movie.
Here is another song you may appreciate (sorry for the swear word):