Posted 9-16-19
I hope you all had a great weekend! I had several events of note, at least to me. We had our 61st Annual Applegate Family Reunion, always a good time of fun, food and fellowship. Later Saturday I went fishing again to clear my mind a little. Some use prayer (very wise), others use alcohol (not wise) and others have some other thing. I get it. I really do. For me it is fishing (and prayer down by the river). Sunday was nice too…church, Chipotle/Braum’s to meet the needs of the Applegate churchgoers, then home for a little chill time and prep for a new week. Ups and downs, like always, but overall not bad.
As I sat on the bank of my newest fishing locale, I got to thinkin’ about how unsatisfied I was with only listing 10 12 Things You Can Learn About Dementia From Fishing in my article last week, so I think I will shoehorn some more in here today, as I am wont to do. While I realize that the two not similar in any way, I do think we can explain dementia to others using odd, but familiar topics so they have anchor points of reference to try to get a hold of the concepts. That is kind of my point here at the Digital Cornbread table…plus it validates my fishing time a little so caregiver guilt doesn’t rear its ugly head (Here are several links on that topic from past Cornbread: Link Link Link Link .
So off we go! (Casting a Nightcrawler sound in the background) 🙂
- Keep your line tight.
When you fish (and when you attempt to video yourself fishing), reeling the slack out of your line helps you keep more attentive to what’s going on. In the places I have been lately, little worm-snatchers (perch) will: (1) relieve you of your worm, toot sweet; or (2) will swallow your worm and hook all the way to their lily liver… if you don’t “set the hook” when they bite. In a nursing home setting, visiting often, especially at varying times, is how you “keep your line tight”, if you will. The more they see you and your smiling face, the more they: (1) Know who you are (2) Know you care about your loved one (3) Know you are your loved one’s advocate. (4) Know that you will notice if something isn’t done correctly. (We have found med problems before…see earlier posts). If you let your line out and the slack spins out of your reel, you won’t notice little bites from fish and the worm-snatchers of semi-apathy will strike. I am not saying nurses and staff don’t care about all patients, but human nature/experience teaches us when we are rewarded (or otherwise) it changes things.
- Just when you think you are alone, you discover there are more.
When I first got my carcass plopped into my folding fishing chair, a cute little shell caught my eyes. I took a picture of said shell (on the left above), and put it back where I found it. Then I realized there were dozens of them within reach of my chair. Such is the same with dementia caregiving. Prepare to feel alone and that you are the only caregiver struggling with helping and feel that your loved one is the only one who has the disease. THEN you find the oasis–a support group or a friend who has “been there” or the Walk to End Alzheimer’s–and you realize, with relief, that you are not alone and others can/will help. This aloneness feeling will return, but you can look around and see shells people everywhere in the same boat. There is strength in numbers…let’s stick together and help each other 🙂
- Not every rock or limb is a fish, and likewise.
Fishing, in the place I fished this weekend, is challenging because there were quite a few limbs and huge large rocks in the water. Fish dig this stuff, but so do hooks. It was only about five-foot deep, but the water was a little murky, so I couldn’t see what I was fishing around. There was also a little current, so my worm wormed his way around aimlessly until getting snagged or bitten. (Note: I use the “HIS” pronoun here because had the worm been a female, she would have asked for directions!). If I jerked my rod every time I felt a tug and/or reeled in and recast, I would wear myself out and either get hung up or would leave empty-handed because of scaring away the fish. Similarly, as I mentioned in Mom Hacks Version 1, when some symptom that appears bad comes up, don’t immediately assume the worst or the best. Instead, study the data and start simple. Ask yourself: (1) is it environmental? Are they too hot or too cold? (2) Could it be the ever-common UTI? How is their sleep? How are their digestion/toileting processes coming along? If you rush to the emergency room or call the director of nursing with every concern, you will eventually cry wolf too many times and will grow weary. Start with the simple things. (Note: If there is a sign of a stroke, disregard this and call 911 immediately)
Sometimes the things that should help are just a pain in the butt.
I am a positive person. I really am. Sure I have negative moments, but more often than not I focus on the full over the empty cup. I was thrilled with the nice, shady place I found to fish Saturday. I was under a tree (on the left on the left picture and the right on the right). However, there was a very small gravel bar behind said tree and there was a slope down to the water. Therefore, the only way you could cast your line was to stand up, maneuver around Mr. Oak, cast sideways hoping you didn’t cast into the shade-generating limbs hanging down, then hope you could reel back in without snagging the roots below…and all of this without falling off into the water. The fish were everywhere(!!!)…but the tree was a pain. Same can be said with some “helpers” in our little care team. They try to help, but are not always ideal. Do this: find ways they can help, and assign them those tasks, and reward them like crazy when they succeed in them. Don’t push them away. Everything needs to be done, just find things they can do and have them do them the best they can. You will find that everyone who cares for you and your loved one, in some small or large way, wants to help but often can’t figure out how. My tree wanted to give me shade and a place to prop my feet, but it ended up helping by just being pretty and cooling me off for while…and that was enough for me at the time.
Tangles stink!
Back to this picture again. Note that my guides are all out of whack in my rod? (I looked it up on fishnoob.com, the eyelet things the line passes through are actually called guides. There is also one called a butt guide, which may also be another name for my parents who were always telling me “Get your butt over here!!!!”, but I digress). The next cast after this one I actually cast the top half of my rod out into the water where it and my line got tangled up such that I ended up hacking the line all out like a serial killer in order to be able to fish again. I lost a wad of line and some valuable time, but all was well. Tangles, in dementia, are worse. Here is one of my favorite explanations of Dementia. At the 11:35 mark of the video it explains Tau Tangles graphically and is pretty cool…and by cool I mean it really isn’t cool. It reminds me of the “compromised delivery network” that caused my line to get messed up. Much could be said about tangles and plaques, both of which are tied to dementia, but that will have to wait until a future piece. (Here is another)
Sometimes the little stuff is what costs the most, when you add them all up!
The above picture is one of the 15-20 I caught Saturday, all of which were undersized to keep according to the Missouri Department of Conservation. The fine for keeping one hits 3 figures with each additional one adding to the bill. I tallied up a quick $200-300 in fines should I have kept my entire fish bounty. Are the little things expensive? Yes in fish and yes in dementia. Medicines in the dementia symptom arena are pretty expensive (Retail on one popular pill is nearly $160/month although generics are much cheaper). Multiply that times millions of patients and it turns into a pretty expensive disease just in that portion of care. Mom takes about 8 different pills these days (ground up and slipped in her yogurt). Who knows the total cost of these little things?!? Stack on the cost of meds the costs of specialized nursing, durable medical equipment, frequent ER/behavioral healthcare visits, special beds, lock down costs and more…then tag on the tremendous cost of liability insurance and it is pretty easy to see a bunch of things adding up to a huge bill. According to Alz.org, the average cost of a”Semi-private room in a nursing home: $245 per day or $89,297 per year”. My recommendations: (1) Contact your local Area Agency on Aging (2) Contact a reputable lawyer who specializes in elder law. They have to know elder law to help. They are expensive, but they saved us many, many thousand by helping us understand the law behind Medicaid. (Research the terms “Medicaid-approved annuity” and “Medicaid-approved promissory note”.) I am, in no way, a lawyer, nor do I have the mental horsepower to be such, but I can tell you from experience that working with this group of folks is money well spent. The little stuff adds up. You need their help.
Where there is water, there is beauty.
Lots of beauty near the river! The water helps in this hot summer! Likewise, keep hydrating your loved one. Dehydration is a huge problem in patients with dementia. Patients with dementia get dehydrated because of many reasons: (1) Taking meds that naturally dehydrate (2) They cannot always tell you they are thirsty (3) They may forget to drink and forget how to drink. (4) Excessive alcohol and/or caffeinated beverages can dehydrate (5) Inability to regulate body temperature or recognize when they are hot/cold. Give them a lot of water, with a thickening agent in it if they have trouble swallowing. Popsicles, fruits and the like can also help with keeping them hydrated. They bloom when they are hydrated. They wither when they are not.
Always leave the river cleaner than how you left it!
I always try to keep the fishing areas clean or leave it better than when I got there. Leaving junk around makes everyone sad. Do you know what works cleanup duty in the human brain? Sleep! I am not comfortable stating definitively that bad sleep habits cause dementia, but they are certainly a piece of the puzzle. Here are 3 links on the topic: Link Link Link . Bad sleep habits cause trouble remembering, they cause increased proteins that are found in brains of those with the disease and they make the brain and the whole health picture of the patient more vulnerable, so take it however you want. It is good to sleep and let your brain reset regardless whether it is an actual cause.
I think you can summarize the 20 total things we can learn from these two articles thusly: (1) Mark thinks about this topic a little too much (2) Mark is worn down from thinking about this topic; and (3) Mark misses fishing with mom and not having to think about this topic. Thank you for indulging me on our two-part guided fish trip.
Update: Mixed weekend. Mom, for the most part was ok. She is still very zonked out quite often and zoned when she is awake. They have made it a point to keep her in bed a little more than before because of her sores from the chair. However, the bed seems to leave her less aware. I will talk it over with her doctor tonight if I can catch him.
Have a great week, all!
#EndALZ