“There will be sunshine…”

Today has been a weird day. It has been dark most of the day, with rain since before I was up at 6:30am. At about 2:00pm, the clouds cleared out and we had blazing sun. And then there is mom. LOL She has had bronchitis for a week. She has not gotten dressed since last Friday. So for most of today, she sat and watched the Game Show Network, or whatever it is called. Perfectly content to have her breakfast and lunch brought to her lap on the couch. Then, she all of a sudden says, “Well, I guess I had better get ready for the day.” Now mind you, this was at 2:00pm. It is now almost 5:00 and that task has still not been completed.

I have been doing laundry most of the day, slowly completing our loads. I had mom’s laundry ready to hang up and put away. I walked into her room and she was looking out onto the front yard through her window, drapes all the way open. I asked her what she was doing, since she was still in PJs. She turned, and started to yell at me. I saw she had her magnifying mirror in her hand, and her eyeliner in the other hand. (About 10 minutes prior to this, she had walked out of the bathroom, completely made up like she was heading to the theater for the evening performance of the Bolshoi Ballet). She then proceeds to yell at me and tell me it was quite obvious she was putting on her makeup (another layer). I noticed she had brought all of it from the bathroom into her room, including deodorant and razor. Sigh. I quit talking. I put her clothes into the closet and laid her other folded clothing on her bed, and I walked out.

Mom has been sick for 8 days with bronchitis. She has been on antibiotics and cough medication. I administered her cough medicine using the same dosage as children, and she slept through entire days, when she was really sick. Gradually she has not been as affected by the medication. Today, it seems like she woke up. Really woke up. And for whatever reason, she is pissed off at the world. And lucky me, I am her world. Alzheimer’s affects people in so many weird ways. Common concerns are bathing and toileting issues. Mom has spent the better part of two hours today perfecting her makeup, but hasn’t brushed her teeth in over 3 days. When I remind her, she yells at me. Sigh. She cannot get her clothing on and off without holding onto something, or even sitting down. She used to be so limber and agile. She is slowly having trouble making enough of a fist to hold a fork or to not spill at every meal. All her shirts and sweaters are stained and the dog loves where she sits, constantly licking up her spills. She would be so embarrassed if she knew. She is also getting to the point where soft foods are easier. She has trouble chewing and she cannot cut her food herself. So I cut all her food into bitesize pieces and keep our diet to pretty soft stuff. She cannot be bothered with crackers or chips, cookies or hard shelled tacos. Tacos, hard or soft, are pretty much out of the question anymore. They are too hard to hold all the ingredients inside of, in order to get them to her mouth. She cannot hold shampoo or conditioner in her hands when I squeeze it out for her (she cannot squeeze the shampoo bottle) and most of it ends up on the shower floor and not in her hair. If she gets her hair wet, she thinks she has showered. I have to hand her shampoo, conditioner, and then in turn, soap on a wash cloth. Otherwise, she will just get wet and be done. And I have to verbally tell her where to wash next. I have to remind her to rinse her hair, or wash off the soap. The other day she thought the water was too hot and turned it all the way to cold. In Alaska, cold water is like ice water in the lower 48. It caused quite a reaction!! LOL!

I am describing this because people think Alzheimer’s means they can’t remember. It is more than that, so much more. Their brains are not getting the signals they need to function. It is like pouring grease down a sink…it slowly clogs the drain, until just a trickle of water gets through, and until finally nothing gets through. Alzheimer’s causes the entire neurological system to slowly shut down. That affects their entire body. Everything that is neurologically controlled is affected. Their ability to speak, swallow, chew, sit, stand up, walk, get into and out of vehicles, feed themselves, watch TV, read, cook, hold a conversation, write their name, know the day/date/time. My mom does not know where she is. She commented on a fishing show which showed Alaska and her comment was, “They have good fishing way up there.” She does not know the time of year. She does not know who lives with us, aside from the two of us. My husband travels a lot for his job and when he gets home, I have to address him a few times as who he is and then she settles in. Once he is here a day or two, she knows who he is. Alzheimer’s is slowly taking away my mom from herself, and for those around her. She does not know who my kids or grandkids are. When they took her for a few hours last week, she was so confused, because I was not there. She cannot keep up with our conversations and thinks everyone is too loud. She is happy when Steve Harvey is on TV. She does not understand the games, but they make her happy. Eventually, her neurological system will slow down and get so clogged up, she will not be able to breathe or swallow and she will fall asleep and never wake up. And it is coming faster and faster.

And today was not a good day. We have sun again, after a brief but heavy random snowfall that lasted about 10 minutes. Ha-Ha. And I am trying so hard to let my attitude reflect the weather. There might be rain, clouds, even snow, but the sun always comes out. Sigh. Alzheimer’s sucks. It really does.

“Don’t worry, be happy…”

I’m on a roll today. Been discussing the use of our DNA by the government. In case you are unaware, the government accessed a DNA testing company’s site and was able to connect a killer to a series of crimes by using his relative’s DNA profiles…with no permission needed by anyone. No court order. When you submit your DNA for testing to a company, you have choices. You can agree to allow public access, wherein your information is out there. They encourage this option, saying you will find more relatives around the world this way. According to them, it gives you more information to complete your background and your search for your family roots. There is another option, to remain anonymous and to keep your account private. If you do that, court orders are required to access your account if you do not give prior approval. In this case, no one whose DNA was accessed had to be asked, because they had chosen the public option (per the news stories posted) and the government could swoop in and get all the information they wanted. They were able to connect a man, who seemed like a normal sort of guy in many ways, to a series of horrific murders, rapes, and torture. All from his relative’s DNA.

My husband is what is known as a Volga River Russian, or “Germans from Russia.” And he is Volga German on both sides. There is a national organization and they keep meticulous records. So he has no doubt who his family is, nor is there doubt who he descends from. In my family, we are British, on both sides. We have, on my dad’s side, a genealogist, who created complete records back before the year 1099. On my mom’s side, I know my family tree back through my mom’s great-grandparents. All of this being said, neither my husband nor I have any real need to know who our families are, nor who we descend from. So for us, we are not even tempted by those cute commercials with the leaf every time you make a “connection,” or the ones where the guy changes from lederhosen to kilts (or is it the other way?). But our country is one of diversity and movement. People move away from family and lose contact. In a generation or two, people have no idea where they came from. I get the idea you might like to know. And for those who have immigrated to the USA from other countries and have no clue where their families came from, I can understand the urge or even the need, to know your roots.

This rant or roll I am on is not about that, not at all. People who choose to use those services are free to do so, and millions have. The issue I have is that the government just decided to grab some DNA, with no permissions or consents required, to do some research. Now there are those who argue it has brought a criminal to justice. I am all for that. I have worked in the “industry” and law enforcement needs all the help they can get. I do get it. However, it is my concern for the shreds of privacy we have left in this country. We cannot expect, once we have ventured into anything electronic, to have any sort of locked-down information. When you buy a house, you sign all sorts of paperwork. They file your deed. Your deed has so much information on you…and they post it; every deed is posted online. Property records are public information. There is so much information online about people, you would not believe it. So to assume things about us are private if we lock down our internet or our social media accounts, well, it is naive. Do a search under your name. I did. It had my maiden name and most of the places I have lived over my entire LIFE. There was information about my schools, jobs, all my kids’ names, etc. It was sobering. So add to that my DNA and my government knows everything about me.

There are movements in legislation that people are unaware of and pretty much ignore. One of the things that annoys me is with our children. Legislation was approved that allows our government far more information than I think is required for educational/governmental purposes. They can now track our children’s SSN, along with medical information (like inoculations, any doctor’s notes and comments – think IEPs you may have for your kids based on psychological testing and diagnoses they may have), grades, teacher’s notes, income of parents, and all sorts of family information, which can be gained through simple things like the census (think about what you share in the census, including if you go to church and where, etc). Here in Alaska, we receive an annual payment called the “Permanent Fund Dividend,” or PFD. In Alaska, PFD information (which includes information on the family receiving it, because the children are minors) is attached to the child’s educational records. It is all a part of PK-12 here, and Common Core tracking the legislature thought was a good idea. They track all that information about you and your children starting in Pre-School through aged 20. Gotta love it.

So when you add it all together, there is a lot of information out there on us all. Some of it we are okay with and approve, other pieces of information most people are unaware even exist. And if we truly understood what was known, I am pretty sure we would be very, very upset. Add to that our DNA and our government knows literally all about us. Even now, medical records are being linked to our SSN’s, so there isn’t too much of a stretch to add our DNA. And so, I ask you, how much are you willing to share with the world?

When that much information is contained in one area about any of us, what can it be used for? Well, in the case that started this rant, a criminal was brought to justice. Yay! But I ask you, what if it is used to deny you medical coverage because you have the gene for some sort of cancer? What if your genetics show a propensity for weak lungs, or asthma, or heart disease, or obesity, and the government does not want to approve any sort of maternity coverage, because they do not want you to have children, passing on that weakness? Or they insist that you be sterilized? What if they deny you medical care, because your genetic make up shows a history of a blood disease? Doesn’t government health care in light of all these questions, and in light of the little baby in England this week, scare you just a little bit? (Rest in peace, little Alfie Evans +, victim of socialized medicine). Imagine all the information found in medical, financial, and educational records, all combined in one place, and what it possibly could be used for. Thinking of the Scarlett Letter placed on a woman for the crime of Adultery (and it still makes me mad the man didn’t get one on his shirts) and in light of all I have said above, it does not take too much of a stretch to see how the “Yellow Star” was imposed on the Jewish population in Nazi Germany.

I do not consider myself a wigged-out, right-wing, conspiracy theorist. I don’t. But I can see all sorts of things that do not sit right with me about this DNA thing, and many others. I feel like 1984 and other prognostications are happening, and we are too glued to the most recent reality show or social media posting, we don’t even notice. Our rights are being stolen and pretty much the majority of this country hasn’t a clue. So long as their lifestyle is not interrupted, their cable is not turned off, or their cell phones don’t die, they are happy enough. But I sure wish people would pay attention to some of this stuff. Because it is like we are all the frogs in a pot, and they are slowly turning up the flames, and we are not even noticing.

Here’s a little song I wrote
You might want to sing it note for note
Don’t worry, be happy
In every life we have some trouble
But when you worry you make it double
Don’t worry, be happy
Don’t worry, be happy now

(Lyrics by Bobby McFerrin)