The envelope, please...

I love science.  For Christmas this year, I asked for a telescope and I received a very cool one that I don’t have to squint my eye to use plus it tracks the planets as the earth rotates. I haven’t used it much because of how darn cold it’s been but as soon as the weather straightens up, just try to get me to come inside on a clear night.

The science of DNA and genetics has always interested me as well. A couple of years ago Bill gave me a 23andMe Genetic Testing and Analysis kit for my birthday. I love this kind of stuff - being able to take college biology in my forties made me a very happy girl. It took me a stupid amount of time to find my slide sample in the microscope but when I finally did, heaven. I was even able to make e.coli glow and not botch it up - pretty simple experiment but if anyone can make it come out a little odd, it’s me. My professor seemed to be amused by my backward way of doing things (I’m left handed so I have a permanent pass); I can still hear him announce, “Mrs. Geiser! How can I assist you today?” almost every time I set up lab space. I would take that class again if I could.

Anyhow, back to 23andMe. The ancestry part was interesting, no real surprises. I’m mostly Northwestern European; British, Irish, French, German, and Scandinavian. The part that really tickled me though, was that out of the over 1,100 people on the site that I’m related to, I’m in fourth place for having the most Neanderthal variants (there has to be a competitive gene in there somewhere). With 293 variants, I have more than 74% of all 23andMe customers and I have my Neanderthal relatives to thank for my height. Fascinating.

Stick with me, I’m getting to the point of all this.

The site also tests your DNA for carrier status and genetic health risks if you want them to. As more tests are done on my sample, I will occasionally get a notice that I have a new health report. For almost all the tests they have run on my DNA, I’m not a carrier nor do I have a gene associated with a genetic disease, like Parkinson’s. I say “almost” because I do have a genetic variant for age-related macular degeneration which is good to know. I told my ophthalmologist, he noted it in my records, and suggested some supplements to take. No big deal.

A few months ago, I received an email from 23andMe that there was a new health report in my records. I opened it and it, and after a few “disclaimers” and “are you sure you want to know?” windows I got to the report stating that I have the e4 version, or allele, of the APOE gene which is associated with late-onset Alzheimer’s Disease. I only have one, not two, so my genetic risk isn’t as high as it could be but I’d really rather not have any at all. The quickie stats* for females with one copy of the APOE e4 variant are as follows:

                                   Age 65                                         less than 1% chance 

                                  Age 75                                          5% to 7%

                                  Age 85                                         27% to 30%

                                  No APOE e4 variant                    6% to 10%

                                 General population of women     less than 1% to 14%

*this information was compiled by 23andMe

So now I need to sort out how I feel about this. I could take a glass half full approach and be happy that there is about a 70% chance that this little gene stays asleep and I skate through my 80s with my memory intact. If I had never been exposed to someone with dementia or Alzheimer’s (at this point, maybe mom has Alzheimer’s - either way that ship has sailed) I think I would have read the report and thought, well shoot, that kind of sucks and moved on. From where I’m looking at it, the glass is most definitely half empty and it more than sucks; it terrifies me. Not in a paralyzing, I can’t move on with my life, it’s all I think about way. It’s more like a little tic tac time bomb has been implanted in my brain and I can hear that bad boy ticking away. The ticking is very quiet and may not ever mean a thing, but it’s still there.

I did some reading about the gene and looked into what I could do to help myself: eat well, exercise regularly, and never stop learning and challenging my body and brain. Check, check, and check. Through my reading, I ran across some sobering facts at the Alzheimer's Association website. Did you know that deaths from heart disease have decreased by 14% since 2000? That’s great news. Did you know that since 2000, deaths from Alzheimer’s have increased by 89%? Well, hell. And there’s the movie Still Alice with Julianne Moore. That gave me something to think about. A lot of something. There’s so much information out there and so much to learn about Alzheimer’s; however, the more I read the further down the rabbit hole I found myself going so I had to put it aside.

There’s always a chance that being with mom is the closest I’ll come to dementia or Alzheimer’s. Plus, there are so many positive, wonderful things I have to look forward to - I’m not going to let something I have minimal control over muddy things up. And really, who’s to say I won’t get taken out by some wayward pelican on one of my walks by the lake? Or have my number come up on the Northwest Expressway? I’ve been in a wreck there, believe me, I know all too well it could happen in the blink of an eye. None of us are guaranteed tomorrow or even the rest of today so I’ll be grateful for what I have right now and keep doing what I’m doing the best way I know how.

In hindsight, would I still want to know? I can say with 100% certainty I would. Mostly because I would take my own advice. For example: Whenever my son took a test or a final while he was at OU, I’d ask him how he did - he’d tell me how he felt he did, but he refused to check his grade online until I threatened to check it myself. It was as if the act of checking it somehow made it gather up molecules and become real. For a kid who usually uses logic as a weapon, this behavior made zero sense to me. Whether you know the outcome or not, it’s still there. It exists. And you may have time to do something about it.

"Fear keeps us focused on the past or worried about the future. If we can acknowledge our fear, we can realize that right now we are okay. Right now, today, we are still alive, and our bodies are working marvelously. Our eyes can still see the beautiful sky. Our ears can still hear the voices of our loved ones." - Thich Nhat Hanh

So it begins

2017 is DONE!!! The holidays were busy like they always are but they were good, too. And very happy - our daughter is engaged! The next year is going to be a full one with lots of wonderful things to look forward to.

I’ve written several pages trying to get back into the swing of normalcy. When I went back to read what I’ve written and to choose my next blog post, I noticed one main theme - negativity. That’s not who I am or, at the least, whom I want to be. And it’s certainly not why I’m writing this. I've tried to reframe my thoughts but I'm not sure of my level of success.

I have so much to be thankful for; my family, my friends, and some very wonderful people who make my life so much brighter than it would be without them. I smile more than I think I ever have and I’m so grateful for what we’ve accomplished. It hasn’t been easy, but from where we are now it’s been worth it.

But along with all the good things, there will always be a few struggles. I’ve found there’s a lot of guilt that comes along with taking care of a parent, no matter what the reason is. There are days when I’m just tired, or over-scheduled, or have a big case of the “I-don’t-want-tos”. I feel better knowing she’s ok and she’s still mostly pleasant, but lately there’s been more odd behavior and a lot more confusion. For example: she’s forgotten how to turn her heat on so then she complains that she’s cold and I find her wearing two jackets. She’s also forgotten how to turn it off so her room gets too warm and she turns on her floor fan to cool it down. It’s a simple switch - turn it clockwise for low, medium, or high and turn it the other way to turn it off - but she just can’t remember how to work it. I marked “low” and “off” with a dot of hot pink nail polish. Time will tell if it works or it’s just a pretty little decoration.

Update: it doesn’t work.

I was talking with a friend of mine about how frustrating (that may be too strong of a word) it can be when you do so much for your parent and they forget or don’t acknowledge what you’ve done; not because they’re ungrateful, they’re just not capable of seeing beyond their own scope. The time spent visiting with them; the time spent away from work, family and friends, and the time spent being concerned over stuff you have no control of - it can be overwhelming. Exhausting. And money. There’s always the money thing to worry about. Every year, mom’s rates go up. Not by a whole lot, but we’re getting close to a monthly amount I’m not very comfortable with. It’s just tough. Not horrible by any means but it’s all relative, isn’t it?

You’d think that eventually I’d adapt but who I am tends to fight against that. I have a few personality traits I’m not particularly proud of but they were born out of necessity and I’ve had years to perfect them. I’m hyper-vigilant and prone to over-analyzing. I also try to think of all the things that could go wrong so that I’m prepared when they do - which is a load of BS because that’s not how the world works but, tell my emotional side that. My hypervigilance and my “list all the things that could go wrong” superpowers have been on full throttle for the last four years, ever since mom moved here. I’ve learned to quiet them down but they’re always humming along in the background.

I understand what is happening to mom is out of my control. But it doesn’t stop me from wondering what’s next or when the next weird thing is going to happen. The behavior changes - the latest one,  I just can't wrap my head around. How do you forget to do something you’ve been doing without thinking for at least 76 years?? There isn’t an answer to any of it which is so frustrating. How cool would it be if I could just roll with the changes? (Hey there, REO Speedwagon) I know new things are going to pop up and my mom isn’t going to get better but I don’t know how to just shrug my shoulders, live in the moment, and move along. I don’t think it’s possible.

Nothing stays the same

No matter what fate chooses to play, there's nothing you can do about it anyway -                          Jackson Browne, For a Dancer

Mom has always written reminder notes to herself, they were all over her apartment when we moved her out. Because this is what she’s used to, she asks me to write down when I’ll be there next on the notebook by her phone. The notes are simple: “Melissa will be here on Thursday at 12:00 to pick you up for Thanksgiving” followed by my phone number. Or, “Melissa will be here on Wednesday at 1:00 to pick you up for your manicure/pedicure appointment. Bring flip flops”.

But for the past few months, she doesn’t remember to read the notes I leave and every time I show up it’s a “surprise”. This Thanksgiving she called me in the morning and said she needed to know “what’s going on” with a concerned tone to her voice. I told her I was going to be picking her up for Thanksgiving and asked if she still had the note I had left by the phone. She did, and she read it back to me. The thing is, before she called me, she had to look at the note to find my number; I just can’t understand the disconnect between her wondering what she’s going to be doing, looking at some words, and making her way to the bottom of the note for my number. I know there’s no “understanding” what’s happening to her, but that doesn’t stop me from trying to figure it out.

I know why she doesn’t “see” things like notes the way you or I would, I know she can’t help it, but it irritates the hell out of me sometimes. Every time she is “surprised” to see me I have to remind myself to not tell her that no, it isn’t a surprise, I wrote it down. Why continue to write down anything if she’s not going to read it?? I know the answer: it’s because, in some small way, that note by the phone is comforting to her even if the thought process to use the information on the note is broken. It still irks me even though I know the hows and the whys. Mother Theresa would be appalled.

Back to Thanksgiving. An hour after the first phone call, she called back which is normal for her; once she recognizes her schedule is going to be different she gets a little anxious. I explained again that I would be picking her up at noon, etc., and she said she was looking forward to it.

When I got to her place, I headed for the common area where she hangs out. I knew they were going to be serving lunch around that time so I expected her to be at her table with her friends. I was right, she was there - eating. And, when the aides saw me they all started saying things like, “look, Pat, there’s your daughter. We told you she’d be here”. She had obviously been concerned or feeling sad, although I’ve never not been there when I said I would be. I hugged her shoulders and she looked right through me - she had no idea who I was, even when I asked her if she’d like to come to my house for Thanksgiving. I think she sort of recognized me after I spoke, and the aides and her friends identifying me as her daughter probably helped her put it together.

We got to the house and I finished getting dinner ready. I poured her a glass of wine, we took a few pictures and then ate. She pushed the food around her plate, ate a couple of dinner rolls and waited for dessert. While we were eating, the kids decided to have a bit of fun with grandma and tell her that they weren’t the only children I had, there were more. Five more. I don’t know what got them started but Bill joined in and told her that he had other children as well, all over the world - most of them he hasn’t had a chance to meet yet. None of it is true, at least as far as I’m concerned, but she seemed tickled by the idea that she had a bunch of grandchildren. Then Leah or Logan told her that I had just had a baby but it wasn’t here, I laughed and said I gave it away because it was too loud. Mom’s answer to that was “Well, sweetie, you look really great for just having had a baby!”. I reminded her that I’m 52, a little past my baby hatching days, and she replied that I was holding up well. Mercy.

Some people may think it’s a little mean to tell stories like that to my mom but it seemed to entertain her and keep her engaged. My kids can ramp it up in no time and have everyone going in a good way - I think it was just what she needed. She was laughing and joining in and that’s way better than watching her push a spoon around waiting for ice cream. Besides, she’s not going to remember any of it anyway.

When she was done with dessert she said she was ready to go back to her room. I grabbed my purse and started heading for the garage and she asked where I was going. Um...to the car so that I can take you home? She got a confused look on her face and said, “I live here, don’t I?”. Ah, so this was new. I told her no, she had her own place not far from here and I pick her up and take her back. She still wasn’t getting it, I hadn’t seen her look that confused for a long time. I explained that once we got in the car and started driving she’d recognize what she was looking at. I don’t think she believed me but she got in the car anyhow.

We started driving and she started her usual chatter, remarking about the weather, asking how I was doing, how the kids were doing, did we have any trips planned, and how are the dogs. It’s a fairly tight script that she follows every time we’re together. I answered her like I always do but I did show her the pictures we had just taken of her and the kids and me. She asked when the pictures were taken. She had already forgotten and we were not even 10 minutes into the drive. She started running down the script again and I started answering her questions again but this time, I left out the pictures.

She seems to be doing well, she’s happy and doesn’t complain and she has friends who are always around her. The way her dementia affects me, however, seems to be changing. I know that there’s no recovery from this and I know that it’s only going to get worse; I’ve resigned myself to those facts. And I’m ok with her not recognizing me right away; I knew it was going to happen and it’s not going to get better. But lately when I’m going to see her, after I leave, and now pretty much all the time, there’s a new heaviness in how I feel. I’m trying to figure out just where it’s coming from in regards to mom because that’s what I do - I look for patterns in everything and try and put the pieces together in some way that makes sense to me. Once I do that, and the “thing” is figured out, I can put it on my mental shelf and move on.

But this is a whole different animal. There are no connections to be made, and even if something seems to fit one day, the next day or week it doesn’t. And it’s mildly unsettling - I think that’s the best way to describe it. I see the other “kids” of the residents and I recognize the look, I think we all have it. The half smile, the concerned and tired eyes, the yep, you’re going through this too and I get how you feel and it really sucks sometimes expression. So here we are, in our own special group. The membership dues to this exclusive group, though... man, they are a killer.

Today is her birthday

The past few nights mom has called at least twice between 2am and 4am, no emergency, so Thursday night I put my phone on mute. I woke up to 8 missed calls and 8 voice messages this morning. All the calls were from my mom between 4:55am and 5:30am. She started by reading back the note I had left for her on Tuesday when I dropped off her laundry. “It says here that you will be picking me up on March 18th at 4:00pm for my birthday dinner. I was just wondering where you are. I’m in my room.” The last one was, “I see it’s going to be your birthday and I’m supposed to be picking you up. I understand that you may not be able to be here, honey. I’m a little confused about the note.” She never gets upset, she doesn’t cry. It’s the spin that she gets herself into when she gets focused on something. It gets smaller and more concentrated until it’s no longer what it started out to be.

I'll be leaving to pick her up soon. I stopped by her place yesterday to remind her I'll be there today. I've made lasagna which she likes, and a salad which she doesn't. She'll pick at the dinner but she'll have more than one serving of dessert and then it'll be time to go. I'd like her to stay longer but one hour is her limit. All I can do is roll with it. 

My mom and me