Posted 11/9/20
“Jesus answered, “Are there not twelve hours in the day? If anyone walks in the day, he does not stumble, because he sees the light of this world.” –John 11:9
Hi all! Another Monday in paradise, I suppose. 🙂 I hope you all had a great weekend! Mine was still spent recovering for the most part. I had a substantial item removed from my side on anniversary day during my recent trip and still have it packed and repacked every few days until it heals from the inside out. I am hoping to be good as new in the next week or so. Such is life in 2020. 😉
Since we last met, I was also interviewed regarding the FDA consideration (and subsequent failure to endorse…but it may yet be approved this spring) of a new drug that is supposed to help cognition for folks with most kinds of dementia.
Here is the interview’s link:
They are gracious and super nice at KY3. We are fortunate to have a couple of solid news groups in Springfield!
Here is some further reading on the topic we discussed:
This is info on the first trial that failed:https://www.nia.nih.gov/alzheimers/clinical-trials/emerge-aducanumab-biib037-early-alzheimers-disease
https://clinicaltrials.gov/ct2/show/NCT03639987
More data on the changed doses:
https://alz-journals.onlinelibrary.wiley.com/doi/full/10.1002/alz.12213
https://www.neurologylive.com/view/biogen-launches-aducanumab-redosing-clinical-trial-in-alzheimer-disease (This has helpful links too).
While I was on my anniversary outing, we tried to be “outdoorsy” at least a little, and did some hiking. (Note: we are rugged indoorsman by nature. We are super tempted to put on bug spray and sunscreen when we catch an outdoorsy show on TV). But we decided to break from the traditional and hike. During said hike, as I mentioned in my last piece, we stopped and smelled the moss. We walked slowly and carries a tangled stick. Here is that stick:
Sorry for the boring commentary. I really wanted the vide to be the star of the show. 🙂 How does it relate to dementia you might ask?
10 Things You Can Learn About Dementia From my Vine
- The first little stick part– The first little stick I referenced in the video was looped but not held tight. You could slide the stick back and forth freely and enjoy it that way, but if you move it just right, the stick will fall out. In dementia, the temptation is to hold on “loosely”….to not let yourself get too involved or invested because you know that it will hurt to lose them. I completely get that. I was so afraid of seeing my Grandma Applegate in her condition that she was in, that I missed out on years of time with her. I am not judging you, even a little…but I do ask with love: Hold on loosely if you must, but hold on. Don’t give up. Keep loving them and serving them. It is truly worth it.
- The tightly-wrapped stick– The one little stick at the bottom was super tightly wrapped. It could represent those memories that stick, even in late stage dementia. Some of these memories seem to “matter” more to them than others. I am not convinced that that is how it works. Just because a loved one remembers disjointed things that don’t seem to matter and forgets something like a name doesn’t imply importance of the memory at all. Mom didn’t have to worry about remembering my name…and hadn’t for decades. However, she did have concern for me, for the look on my face, and for my family. Don’t read too much into comparing what is there compared to what is forgotten.
- Connections as reference points– I found it very interesting how these two vines were held together by a couple of vines that served little purpose other than that. The brain is full of reference points (anchor points?) that help us make sense of things and help us learn. While everyone learns at different speeds and using different means (hands-on, through stories, etc…), we all learn, in some way, sequentially using these reference points. You cannot learn advanced physics without the elementary aspects of math. We cannot learn heartbreak without heartbreak. There are a thousand examples… When an anchor point is lost, it can also be a house of cards. If memory/concept A is how you understand memory/concept B, if you lose A, you are likely to lose B and others too. It is a terrible house of cards.
- Two, yet one– These are two separate vines. I can’t remember where each came from, but they were near each other until being connected into one. Such is marriage. Married folks in which one has dementia makes for a tragic situation. It is often the case that several common things happen: the spouse enables the one with dementia; the spouse believes, rightly, that he/she is the one who best knows their spouse…but uses this to refuse help/managed care/memory unit care; the fear of being left alone blinds the eyes to the worsening of dementia; One or the other spouse if so caught off guard that they have no reference points on how to do activities of daily living (cooking, cleaning…even yard care). There are others as well. We are together, but separate. He/She is there, but gone. Dementia is devastating to a marriage, but it is also the picture of true love as one gives with little or zero opportunity for reciprocation.
- How did it get where it was?- I am amazed by vines. Plants don’t have muscles. They don’t flex. They don’t have fingers to grab…yet, within a pretty short amount of time they can perfectly loop over and over until they grip hard…hard enough to support my body weight in some cases on our hike. Amazing. Dementia’s weaving its way through the brain/personness of the patient is truly amazing (and tragic). Some change personalities completely…go from a church mouse sweetheart to an angry sailor. Some forget everything for a certain time but still retain old memories. Don’t get me started on music and how it works within this mess. Soooo many things change…it just depends on what part of the brain gets “infected” with this disease.
- What a tangled web!…but it works– It is so interesting how these vines spin, wrap, and weave everywhere…some lightly, some tightly, and some seemingly randomly/to no avail…but everything tends to end up working and with a purpose. This is the picture of a good care group. You need help caring for your loved one. We all need a team. Some vines wrap hard and do a critical portion of stability. Other vines hold on loosely and nurture and love. Some on your care team may only do one “little” thing…maybe mow the yard. Some do a tremendous amount. BUT, all are important. We have to allow them to help and/or find ways they can succeed in helping. It is good for them and good for you and good for your loved one.
- Fragility– The vine is, in many areas, quite frail. Each individual tentacle can be snapped off with a flip. But it is stronger than you think. Similarly, a person with dementia may have lost a lot and is extremely fragile…but there is soooo much still there to love. Just be physically careful.
- Flexibility– One of the things that makes the fragility of a young vine “work” is its flexibility. It sways and bends in the wind…and is supported by others. This flexibility and swaying also gives it more opportunities to “grab” ahold with other vines. The wind is why vines quite a ways apart end up holding hands. Be flexible with your loved one. Don’t correct them. Just don’t. If they ask how their long since deceased parents are (like mom used to), say “never better”. Making them relive a loss or get confused or sad isn’t worth accuracy. Change the topic of discussion where it helps. Break out some pictures. Turn on Andy Griffith. Be flexible….and wrap them up with love from a distance as needed.
- Transportation can be a bear!– Getting that vine home in my completely full vehicle without breaking it was a challenge. It was uncomfortable worrying about breaking it. I really like it and didn’t want it to be lost. Transporting your loved one from the beginning of the journey to the end is also extremely hard for them and for you. You will mourn their loss 100 times. 1,000 times. And that is just before they are actually gone. The guilt factors in as well. Part of me really wants mom to get some miracle treatment that fixes everything…that will likely never exist. Part of me doesn’t want things to get worse. BUT, part of me yearns for her to go to heaven now so she can be rid of dementia, loss, sadness, sin, and the rest. Then the guilt returns.
- Lonely twigs– For every one vine I have seen in my hikes, there are a million…a billion…that are never seen. Only enjoyed by God and an occasional ant or perhaps wren. Such is the millions…perhaps a billion(?) seniors and others worldwide living in isolation. I very well know that mom’s nursing home is locked until COVID improves. But I can do my part in other ways and so can you. Call on someone that is alone. Bring them a casserole. Shoot them a postcard. Zoom with them if you are a computer person…but this plague of isolation needs to end. We are NOT designed for aloneness and it is very hard on us. Let’s all, as a little community, be part of the solution.
I love vines. The Bible and the Savior seem to agree and use the discussion quite a bit, especially here. Am I going to be a rugged outdoorsman now? Nope. But I am thankful for this little vine through which He taught me a lot. 🙂
#EndALZ
Update: Nothing much to report. I will video call with mom Wednesday, Lord willing. The home is getting closer to allowing outdoor visits again as COVID cases there have fallen (heck…they all had it. 🙁 ) Praying? Yup…me too.
Weight Watchers update: A huge win the last 2 weeks. I gained .6 pounds. (“OK diet boy, you are supposed to LOSE weight”). Considering we ate like crazed hyaenas on our 6 day outing, I will take this as a win. Today I am completely back on the wagon and will get to my 150 pound lost goal by summer. For now, right at 95.
I love object lessons, Mark, and you are the prince of those!
Thank you. 🙂 I learn a lot from objects…much more than from statistics or other means of getting a point across. 🙂