As we wrap up this odd little topic, I need to reiterate what a billow is from the first piece:
A billow, according to the beloved Merriam-Webster online version, is one of two things:
- a wave especially : a great wave or surge of water the rolling (billows of the sea)
- a rolling mass (as of flame or smoke) that resembles a high wave. Billows of smoke poured out of the building. (billows of fog)
As I surveyed the digital crumbs of this week, it occurred to me that I could clear up some misconceptions about Dementia/Alzheimer’s with this term “Billows” as well. My friend Stacey shared a great article reminding us that this umbrella of conditions is so much more than merely memory loss, which, by itself, would be bad enough! It is a multi-headed beast that harms and ultimately kills. Allow me to summarize some important ways it hurts and ultimately kills as follows:
- B is for Bedsores. Bedsores can fall into four stages based on level of severity. Stage 1 appear mostly as discolored or darker skin. Stage 2 starts appearing like blisters and begin to change colors. Stage 3 gets much more serious and involves deep wounds. They are still treatable, but you will need to hurry because Stage 4 causes infection and gets into the bones, muscles and potentially organs. A patient with dementia needs to be kept free of these sores whenever possible. Here are some tips that may help.
- I is for Infection. Urinary Tract Infections kill many with this disease, when left untreated or misdiagnosed. Not only are infections of this sort a killer, it also leads to a host of other problems ranging from dizziness, fever and anger/lashing out.
- L is for Lack of Exercise. Lack of exercise in a dementia patient often causes weight gain, especially when confined to a wheelchair. Type 2 Diabetes takes it toll on some 21 million Americans at any given time. Dementia and diabetes seem to have a lot in common, so much so that some call Dementia Type 3 Diabetes. Diabetes, in a dementia patient as in anyone, can shorten life expectancy and exacerbate other problems. It is very easy to see how mom can/has gained weight as she gets essentially no even minor exercise, but so far we are keeping type 2 at bay.
- L is also for Lack of Proper Chewing/Swallowing. One of the most common killers of people with dementia is pneumonia, caused by aspirating/breathing in their food/drinks. This is caused by loss of control of the 40 muscles required to properly eat or drink as well as forgetting how to correctly feed and hydrate yourself. What was formerly natural and required no thought suddenly becomes a matter of will and understanding. These three articles gives some tips on preventing this killer. Link Link Link
- O is for “Oh No! Mom fell again!”. My mom fell at least 6-8 times when she was transitioning from being a flight risk to the late stage she is at now. Falls, as I have written many times, are killers. They lead to concussions, bleeding, broken bones, infection and a host of other problems and ultimately shorten life quickly. Unfortunately there is a “Right to Fall“, which I have addressed a few times as well, so few if any restraints are utilized to prevent these falls. While I do not want to go back to the nursing homes of the 70s and 80s (and before) that found seniors strapped to beds unnecessarily, there needs to be more common sense laws in this area. I don’t have the “Right to Bash My Face Through My Steering Wheel” in my car…I am required to wear a seat belt…and they save lives. How about a happy medium??
- W is for “Wow, that too?!” Strokes and heart attacks are also common in dementia patients, and no only because the majority are older, although that is a factor. The brain’s diminished flow of blood and data is thought to be a major contributor to these two killers and the numbers for Alzheimer’s deaths are probably under-reported with the cause of death being attributed to these two terrible conditions. Good heart health is good for the brain and good brain health is good for the heart. Read through a source like this one and you quickly see how the conditions can be interrelated.
- S is for Suicide. Dementia patients, especially in early- to mid-stages are at a higher risk of suicide than the general population. In co-morbidity (multiple things wrong) cases the numbers get worse. Depression and other behavioral health issues can be intertwined into the problem as well, causing suicide rate increases. One of my all time favorite actors, Robin Williams ,was taken from us far too soon by suicide because of the mix of Lewy Body Dementia and severe depression. Sadly, but not surprisingly, according to the NIH article, “In terms of methods of committing suicide, the vast majority of patients with dementia took their lives using a firearm (73%).” I am NOT telling you that you should sell off your guns because the state has your back. However, lock them up and keep them away from a patient with dementia, if no reason else than they may make a mistake and shoot someone they do not recognize.
As I conclude this study of billows, we can easily see that this hot mess is far worse than “just a memory disorder”…which, again, would be bad enough by itself! As the brain has new and different parts damaged by this disease, new problems like these arise slowly but surely. Smooth muscle/automatic processes become no longer automatic. Everything gets harder and the sheer number of new problems you will discover is astounding and innumerable in a blog post. Until you see it in person, it is hard to get your mind around.
So what do we do? Throw up our hands and admit defeat? Never! We never give up!! Billows Schmillows!!! How about, until there is a cure, we focus our attention on:
- S: Service: Serve those with the disease and their precious care givers, whether in the home or in a facility. Find your own Sweet 17 and love them, visit them, bring them fidget blankets, and be their friends.
- C: Casting: Castall your anxiety on him because He cares for you. 1 Peter 5:7 Pray early and often for those harmed by this hot mess. There is nothing you can do that will make a bigger impact! Without the Lord, all will be in vain. But with the Lord, all is possible!
- H: Hunting: Hunt for information and share it when you are done. I find that the best info for dementia-related topics is on the Association website, but there are other good places too. If you do social media, find good, solid articles and share them. Here are a few sources I use a lot as I study: Link Link Link Link Link Link Link Link Link Link Link Link Link Link Link There are many, many more and I will add them as you comment below and after I check them out. 😉 Please go through the many Facebook and other groups and share information to confused people. Point them to Digital Cornbread too. 🙂 We cannot “fix” the internet’s information problems, but we can try to tidy up our little nook. 🙂
- M: Money. Donate to the Association. Donate to SeniorAge or your local area agency on aging non-profit. They are on the front lines of helping patients and care givers day in and day out and are worthy of consideration of your hard-earned donation dollars.
- I: Inspiration…and perspiration. There are lots of folks struggling helping a loved one with dementia at home, meeting all of the rest of their obligations and trying to sleep occasionally. (It is rightly nicknamed living The 36 Hour Day). Find them and help them. Mow their yard. Provide some respite time so they can pay bills or take a shower or sleep. It is sometimes messy work, but we are called to help those who cannot help themselves, and this group fits the bill perfectly.
- L: Longest Day. The Longest Day is June 20, 2020 and is the longest day of the year in terms of sunlight. It is also the second biggest fundraiser for the Alzheimer’s Association. There are lots of opportunities to help then.
- L: Legislative advocacy. The Association offers opportunities to get involved and help share stories with legislators. We are fortunate in Missouri to have many senior-friendly and Dementia-friendly legislators, but we can never do too much in keeping the cause front and center. SeniorAge also advocates for people struggling with this and a host of other conditions and are sometimes needed similar help. Often merely telling your story and putting a face on the numbers makes all of the difference.
- O: Offer to help science. There are opportunities out there to assist with clinical trials, with surveys, and with other experiments. Offer to help in any way you feel comfortable. I have helped in simple things like being part of researching the effectiveness of having an online support group compared to an in-person one. I have helped evaluate and tweak a soon-to-be-released website dedicated to helping families address driving and gun-ownership in houses with advanced dementia. I am in the process of getting approved for some baseline studies and perhaps some clinical trials in medicines. They need people willing to do long-term ( called Longitudinal) studies that show long-term benefits and problems with medicines. Find what of this list is in your comfort zone or visit this site to see what you can do. There are oodles of options out there that can help.
- W: Walk to End Alzheimer’s Set up/join a team or donate towards the vision of a world without Alzheimer’s and its billows through this event in your area. Our’s is just 2 weeks away (the 21st). It is the biggest Alzheimer’s of the year! It is beautiful, inspiring and will fill your heart. You simply must come. 🙂
- S: Show off your Purple. Wear purple gear from the association and be ready to share your story and help others understand the disease. There is a lot of bad information out there that keeps people from having the conversation with their doctor. There are stigmas and untruths that harm efforts to make life better for those with the condition.
Billows Schmillows!!! We can defeat this stinkin’ disease and help a lot of folks in the process. Let’s all do what we can, starting today. 🙂
Mom was pretty good yesterday, but this morning she was very quiet. She smiled for my sister, but wasn’t her smiley self. She only said one little phrase in the whole visit. It is hard for her and it takes its toll day-in and day-out. I am hoping for a better weekend for her. A full moon is next week which usually brings excitement to her unit (especially the Sweet 17’s memory unit).
Next week we are going to discuss uniquely wonderful things about mom over the last 7+ decades of her life. No more billows. They don’t deserve our time anyway…